@Article{info:doi/10.2196/64228, author="Shepperd, A. James and McBride, M. Colleen and An, Weihua and Zhao, Jingsong and Pentz, D. Rebecca and Escoffery, Cam and Ward, Kevin and Guan, Yue", title="Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study", journal="J Med Internet Res", year="2025", month="May", day="6", volume="27", pages="e64228", keywords="internet trust", keywords="internet privacy", keywords="hereditary cancers", keywords="patients and relatives outreach", keywords="social marketing", abstract="Background: Digital health tools, such as websites, now proliferate to assist individuals in managing their health. With user input, we developed the Your Family Connects (YFC) website to promote access to genetic services for survivors of ovarian cancer and their relatives. Although we estimated that half or more would access the website, only 18\% of invited survivors did so. We assessed the extent to which perceived relevance of the information provided, trust, and privacy concerns influenced decisions not to access the website. Objective: We designed a theory-based cross-sectional survey to explore the following questions: (1) To what extent did nonresponders endorse privacy concerns? (2) Were privacy concerns associated with recall of receiving the website invitation, time since diagnosis, age, and race? (3) Could we identify profiles of nonresponders that would guide the development of future interventions to encourage engagement in health websites for families affected by inherited cancers? Methods: A sample of survivors who were eligible to access the website yet did not respond to the study invitation was identified by linking study IDs to the Georgia Cancer Registry information. The survey was brief and contained 27 items, including recall of the invitation, interest in ovarian cancer information, benefits of using health websites, trust in health websites, and trust in university-based health research. We conducted factor analyses, regression analyses, ANOVA, correlation analyses, and logistic regression to address research questions. Results: Of the 650 nonresponders to whom we sent the short survey, 368 (56.3\%) responded and provided sufficient data for analysis. The mean response of 2.57 on the trust scale was significantly below the scale midpoint of 3 (t360=11.78, P<.001), suggesting that survivors who did not log on were on average distrustful of health websites. Belonging to a racial or ethnic minority group was associated with being more trusting and less skeptical about health websites. Just 196 (30.1\%) nonresponders recalled the invitation to visit the website. Logistic regression analysis indicated that age was the only significant predictor of recall. Testing a model with age, racial or ethnic minority status, and the 6 privacy concerns correctly classified 58.8\% of nonresponders, a rate of successful classification that was not appreciably better than a logistic regression analysis that included only age as a predictor. Conclusions: The nonresponders in the present study---particularly the White nonresponders---were skeptical of website platforms regardless of whether they recalled receiving a website invitation or not. Social marketing approaches geared toward building trust in web platforms by building a relationship with an information consumer and in collaboration with trusted organizations warrant further investigation. Trial Registration: ClinicalTrials.gov NCT04927013; https://clinicaltrials.gov/study/NCT04927013 ", doi="10.2196/64228", url="https://www.jmir.org/2025/1/e64228" } @Article{info:doi/10.2196/50781, author="Arbelaez Ossa, Laura and Rost, Michael and Bont, Nathalie and Lorenzini, Giorgia and Shaw, David and Elger, Simone Bernice", title="Exploring Patient Participation in AI-Supported Health Care: Qualitative Study", journal="JMIR AI", year="2025", month="May", day="5", volume="4", pages="e50781", keywords="artificial intelligence", keywords="AI", keywords="patients", keywords="qualitative research", keywords="patient empowerment", keywords="shared decision-making", keywords="AI-driven care", keywords="AI-support, AI ethics", keywords="responsible AI", keywords="patient participation", abstract="Background: The introduction of artificial intelligence (AI) into health care has sparked discussions about its potential impact. Patients, as key stakeholders, will be at the forefront of interacting with and being impacted by AI. Given the ethical importance of patient-centered health care, patients must navigate how they engage with AI. However, integrating AI into clinical practice brings potential challenges, particularly in shared decision-making and ensuring patients remain active participants in their care. Whether AI-supported interventions empower or undermine patient participation depends largely on how these technologies are envisioned and integrated into practice. Objective: This study explores how patients and medical AI professionals perceive the patient's role and the factors shaping participation in AI-supported care. Methods: We conducted qualitative semistructured interviews with 21 patients and 21 medical AI professionals from different disciplinary backgrounds. Data were analyzed using reflexive thematic analysis. We identified 3 themes to describe how patients and professionals describe factors that shape participation in AI-supported care. Results: The first theme explored the vision of AI as an unavoidable and potentially harmful force of change in health care. The second theme highlights how patients perceive limitations in their capabilities that may prevent them from meaningfully participating in AI-supported care. The third theme describes patients' adaptive responses, such as relying on experts or making value judgments leading to acceptance or rejection of AI-supported care. Conclusions: Both external and internal preconceptions influence how patients and medical AI professionals perceive patient participation. Patients often internalize AI's complexity and inevitability as an obstacle to their active participation, leading them to feel they have little influence over its development. While some patients rely on doctors or see AI as something to accept or reject, these strategies risk placing them in a disempowering role as passive recipients of care. Without adequate education on their rights and possibilities, these responses may not be enough to position patients at the center of their care. ", doi="10.2196/50781", url="https://ai.jmir.org/2025/1/e50781" } @Article{info:doi/10.2196/58167, author="Wood, E. Helen and Karampatakis, Dimitrios Georgios and Coulson, S. Neil and Sastry, Nishanth and Li, Xiancheng and Taylor, C. Stephanie J. and Griffiths, J. Chris and De Simoni, Anna", title="Moderators' Experiences of the Safety and Effectiveness of Patient Engagement in an Asthma Online Health Community: Exploratory Qualitative Interview Study", journal="J Med Internet Res", year="2025", month="Apr", day="25", volume="27", pages="e58167", keywords="asthma", keywords="online health communities", keywords="moderators", keywords="peer support", keywords="digital health", keywords="qualitative research", keywords="patient safety", abstract="Background: Among 5.4 million people receiving treatment for asthma in the United Kingdom, more than 2 million experience suboptimal control, leading to the use of health care services and resulting costs as well as poorer quality of life. Online health communities (OHCs) are increasingly used as a source of lay health advice, providing opportunities for learning and mutual support and complementing information from ``official'' health sources. While engagement with OHCs has the potential to improve self-management, concerns remain about the reliability and usefulness of the information posted. Professional moderation of such communities is essential for supporting sensitive patients, ensuring adherence to forum guidelines, and maintaining clinical safety. Objective: This study aims to examine the experiences of moderators in an asthma OHC, identifying challenges and possible areas to optimize the safety and effectiveness of patient engagement. Methods: All 6 current moderators of a nationwide charity-hosted OHC participated in in-depth, semistructured, audio-recorded, remote interviews. Audio recordings were transcribed verbatim and qualitatively analyzed using reflexive inductive thematic analysis. Results: The 6 moderators interviewed comprised 4 (67\%) specialist respiratory nurses, 1 (17\%) volunteer patient ambassador, and 1 (17\%) customer support manager (all female, with average age 45, SD 10.5 y). In total, 5 (83\%) moderators had at least a year's experience of OHC moderation. Three main themes were generated from data analysis: moderation processes, challenges to effective moderation, and OHC effectiveness. The first theme focused on the different moderator roles and tasks undertaken, including the application of OHC guidelines in dealing with inappropriate content. The second theme covered difficult issues, such as mental health, and practical challenges, including lack of time and concerns about missing problematic posts. The third theme focused on the factors that made the OHC effective and increased its effectiveness, including keeping users safe, generating more OHC activity, encouraging discussion, and raising awareness of the OHC. We found a contradiction in how the moderators perceived the OHC's effectiveness and their role in moderating it. While they expressed concerns about having insufficient time to moderate the OHC, they also felt that it was underused and would be more effective if it were busier or more active. Conclusions: Building on the challenges experienced by the moderators, several recommendations were put forward to optimize the safety and effectiveness of the asthma OHC. Moderators often work in isolation without external training or interaction with others. More research into OHC moderation is needed. A continuous professional development framework could improve moderation quality and user support, aligning with the evolving needs of these communities. These results can be relevant to national and international policy, attempting to enhance the safety of patients' engagement with OHCs. ", doi="10.2196/58167", url="https://www.jmir.org/2025/1/e58167" } @Article{info:doi/10.2196/57212, author="Elphinston, A. Rachel and Pager, Sue and Fatehi, Farhad and Sterling, Michele and Brown, Kelly and Gray, Paul and Hipper, Linda and Cahill, Lauren and Ziadni, Maisa and Worthy, Peter and Connor, P. Jason", title="Applying Patient and Health Professional Preferences in Co-Designing a Digital Brief Intervention to Reduce the Risk of Prescription Opioid--Related Harm Among Patients With Chronic Noncancer Pain: Qualitative Analysis", journal="JMIR Form Res", year="2025", month="Apr", day="25", volume="9", pages="e57212", keywords="chronic noncancer pain", keywords="CNCP", keywords="prescription opioid use", keywords="brief intervention", keywords="brief psychological intervention", keywords="co-design", keywords="patient partners", keywords="qualitative research", keywords="digital health", abstract="Background: Few personalized behavioral treatments are available to reduce the risk of prescription opioid--related harm among patients with chronic noncancer pain. Objective: We aimed to report on the second phase of the co-design of a digital brief intervention (BI) based on patient and health professional preferences. Methods: Eligible patients with chronic noncancer pain (n=18; 10 women; mean age 49.5, SD 6.91 y) from public hospital waitlists and health professionals (n=5; 2 women; mean age 40.2, SD 5.97 y) from pain and addiction clinics completed semistructured telephone interviews or participated in focus groups exploring BI preferences, needs, and considerations for implementation. Grounded theory was used to thematically analyze the data. Results: We identified 5 themes related to intervention content from patient reports: relevance of the biopsychosocial model and need for improved awareness and pain psychology education; nonpharmacological strategies and flexibility when applying coping skills training; opioid use reflection and education, with personalized medication and tapering plans; holistic and patient-inclusive assessment measures and feedback; and inclusion of holistic goals targeting comfort and happiness. Five themes related to the process and guiding principles were identified: therapist guided; engaging features; compassionate, responsive, person-centered care; a digital solution is exciting, maximizing reach; and educate and normalize system and policy challenges. Finally, 5 themes were reflected in the health professionals' reports: digital health use is rare but desired; digital health is useful for patient monitoring and accessing support; patient motivation is important; a digital BI app is likely beneficial and at multiple care points; and safe medication use and managing pain goals. The reported barriers from health professionals were intervention intensity, potential costs, and patient responsiveness; factors facilitating the implementation were the alignment of digital BIs with clinical models, a stepped-care approach, and feedback. Conclusions: This co-design study identified key content areas, guiding principles, enabling factors, and barriers from both patients and health professionals to guide the development of digital BIs. The knowledge gathered should inform future iterations of co-designing digital BIs for the population most at risk of the harmful effects of opioid medications. ", doi="10.2196/57212", url="https://formative.jmir.org/2025/1/e57212" } @Article{info:doi/10.2196/66846, author="King, Akilah and Omoniyi, Tayo and Zasadzinski, Lindsay and Gaspard, Cynthia and Gorman, Denesha and Saunders, Milda", title="Interactive Computer-Adaptive Chronic Kidney Disease (I-C-CKD) Education for Hospitalized African American Patients: Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2025", month="Apr", day="17", volume="14", pages="e66846", keywords="chronic kidney disease", keywords="computerized adaptive education", keywords="end-stage kidney disease", keywords="end-stage renal disease", keywords="glomerular filtration rate", keywords="kidney failure", keywords="usual hospital care", keywords="inpatient", abstract="Background: End-stage kidney disease (ESKD) or kidney failure is a condition where the kidneys lose the ability to function. African American individuals are 4 times as likely to develop ESKD compared to White American individuals. In addition, African American patients are less likely to have an optimal dialysis start and to choose renal replacement therapy modalities that align with their goals and values. Our prior work shows that culturally tailored, in-person education improves patient outcomes. This is the foundation for our innovative intervention using an African American virtual patient educator as an option for hospitalized patients with chronic kidney disease (CKD). Objective: The Interactive Computer-Adaptive Chronic Kidney Disease (I-C-CKD) study will determine whether the computerized adaptive education and usual hospital care impact the health literacy of African American patients with kidney disease. It will also assess how patients' lifestyle and commitment to health goals are impacted by the method of health literacy education. Methods: We will screen, recruit, and enroll hospitalized patients who self-identify as African American and have advanced CKD based on their estimated glomerular filtration rate. Eligible patients who verbally consented will be randomly assigned into either the computerized adaptive education intervention group or the control group (usual hospital care). Patients in the intervention group will receive a culturally tailored, adaptive education module. To analyze pretest, posttest, and follow-up survey results on patient CKD knowledge, ESKD treatment options, and health goals, we will use a paired, 2-tailed t test with a Bonferroni adjustment for multiple comparisons. Results: Recruitment for the I-C-CKD study began on May 2, 2023. We are currently recruiting and have enrolled 96 patients who completed both pretest and posttest surveys as of December 2024. This includes 50 patients in the control group and 46 patients in the intervention group. Data analysis has not occurred. Conclusions: African American individuals often receive less patient education about self-care and treatment options for CKD. We hope this study provides a solution to increase hospitalized African American patients' knowledge of CKD and motivation for CKD self-care through computerized adaptive education, reduce disparities, and improve patient outcomes. Trial Registration: ClinicalTrials.gov NCT06364358; https://clinicaltrials.gov/study/NCT06364358 International Registered Report Identifier (IRRID): DERR1-10.2196/66846 ", doi="10.2196/66846", url="https://www.researchprotocols.org/2025/1/e66846" } @Article{info:doi/10.2196/66215, author="Kratka, Allison and Rotering, L. Thomas and Munson, Scott and Raitt, H. Merritt and Whooley, A. Mary and S Dhruva, Sanket", title="Patient and Clinician Perspectives on Alert-Based Remote Monitoring--First Care for Cardiovascular Implantable Electronic Devices: Semistructured Interview Study Within the Veterans Health Administration", journal="JMIR Cardio", year="2025", month="Apr", day="4", volume="9", pages="e66215", keywords="cardiovascular implantable electronic device", keywords="CIED", keywords="remote monitoring", keywords="RM", keywords="alert-based monitoring", keywords="remote monitoring--first care", keywords="patient perspectives", keywords="clinician perspectives", keywords="veteran", keywords="pacemaker", keywords="implantable cardioverter-defibrillator", keywords="mobile phone", abstract="Background: Patients with cardiovascular implantable electronic devices (CIEDs) typically attend in-person CIED clinic visits at least annually, paired with remote monitoring (RM). As the CIED data available through in-person CIED clinic visits and RM are nearly identical, the 2023 Heart Rhythm Society expert consensus statement introduced ``alert-based RM,'' an RM-first approach where patients with CIEDs that are consistently and continuously connected to RM, in the absence of recent alerts and other cardiac comorbidities, could attend in-person CIED clinic visits every 24 months or ultimately only as clinically prompted by actionable events identified on RM. However, there is no published information about patient and clinician perspectives on barriers and facilitators to such an RM-first care model. Objective: We aimed to understand patient and clinician perspectives about an RM-first care model for CIED care. Methods: We interviewed 40 rural veteran patients who were experienced with RM with CIEDs and 22 CIED clinicians who were experienced in using RM regarding barriers and facilitators to an RM-first care model. We conducted a reflexive thematic analysis of interviews. Two authors familiarized themselves with the dataset and generated separate codebooks based on the interview guides and inductively coded notes. These 2 authors met and reviewed each other's codes, sought additional author input, and resolved differences before 1 author coded the remaining interviews and developed candidate themes. These themes were refined, named, and supported with quotations. Results: Patients expressed interest in an RM-first approach, to reduce the burden of long travel times, sometimes in inclement weather, and to enable clinicians to provide care for other patients. However, many preferred routine in-person visits; reasons included a skepticism of the capabilities of RM, a sense that in-person visits provided superior care, and enjoyment of in-person patient-clinician relationships. Clinicians were interested in RM-first care, especially for stable, RM-adherent patients who were not device-dependent. Clinicians most frequently cited the benefit of reducing patient travel burden as well as optimizing clinic space and time to focus on other care such as reviewing routine RM transmissions, but also noted barriers including lack of in-person assessment, patient-perceived diminution of the patient-clinician relationship, possible loss to follow-up, and technological difficulties. Clinicians felt that an RM-first care model should be evaluated for success based on patient satisfaction and assessment of timely addressing of rhythm issues to prevent adverse outcomes. Most clinicians believed that RM-first care represented the future of CIED care. Conclusions: Both patients and CIED clinicians interviewed who were experienced in using RM were open to an RM-first care model that reduces in-person visits but reported some barriers to solely relying on RM and possible diminution of the patient-clinician relationship. Implementation of new RM recommendations will require attention to these perceptions and prioritization of patient-centered approaches. ", doi="10.2196/66215", url="https://cardio.jmir.org/2025/1/e66215" } @Article{info:doi/10.2196/58264, author="Elg, Mattias and Kabel, Daan and Gremyr, Ida and Olsson, Jesper and Martin, Jason and Smith, Frida", title="Identification and Categorization of the Distinct Purposes Underpinning the Use of Digital Health Care Self-Monitoring: Qualitative Study of Stakeholders in the Health Care Ecosystem", journal="J Med Internet Res", year="2025", month="Apr", day="3", volume="27", pages="e58264", keywords="self-monitoring", keywords="healthcare provider", keywords="medtech provider", keywords="digital health", keywords="healthcare ecosystem", keywords="qualitative study", keywords="technology", keywords="semi structured interview", keywords="macro perspective", keywords="telehealth", keywords="telemonitoring", abstract="Background: Digital health care self-monitoring has gained prominence as a tool to address various challenges in health care, including patient autonomy, data-informed decision-making, and organizational improvements. However, integrating self-monitoring solutions across a diverse ecosystem of stakeholders---patients, health care providers, policy makers, and industry---can be complicated by differing priorities and needs. Objective: This study aimed to identify and categorize the distinct purposes underpinning the use of digital health care self-monitoring. By mapping these purposes, the research seeks to clarify how technology design and implementation can be better aligned with stakeholder expectations, thereby enhancing adoption and impact. Methods: A qualitative design was used, drawing on 31 in-depth, semistructured interviews conducted with stakeholders in the Swedish health care ecosystem. Participants included patients, advocacy groups, health care professionals, policy makers, pharmaceutical representatives, and technology developers. Data were analyzed thematically using an inductive coding approach supported by NVivo 12 (Lumivero). Emerging themes were refined through iterative discussion among the research team and validated by presentation to health care practitioners. Results: A total of 8 distinct purposes of digital health care self-monitoring emerged: (1) emancipate (enhance patient autonomy), (2) learn (understand health behaviors), (3) improve (enhance patient health), (4) engage (bolster patient involvement), (5) control (manage adherence and symptoms), (6) evaluate (assess health parameters), (7) innovate (advance interventions and processes), and (8) generate (drive new initiatives). These purposes form three categories of value creation: (1) improving the patient-provider link, (2) leveraging big data analytics for knowledge creation, and (3) using digital infrastructure to develop new care processes. Conclusions: Our findings demonstrate that digital health care self-monitoring serves multifaceted aims, ranging from individual patient empowerment to ecosystem-wide innovation. Designing and implementing these tools with an explicit understanding of all stakeholders' ``why'' can help address potential conflicts (eg, balancing patient autonomy with clinical control) and facilitate more holistic adoption. Ultimately, this study underscores the importance of clear, purpose-driven approaches to promote better health outcomes, knowledge generation, and care process improvements. ", doi="10.2196/58264", url="https://www.jmir.org/2025/1/e58264" } @Article{info:doi/10.2196/58410, author="Hernandez-Spalding, Kaitlyn and Farinu, Oluyemi and Clarke, Lasha and Lewis, Tamiah and Suarez, Angie and Bugg, Kimarie and Strickland, Kieauna and Molleti, Ashley and Maxy, Sherry and Hernandez-Green, Natalie", title="Centering Birthing Experiences of Women of Color: Protocol for a Qualitative Maternal Near Miss Study", journal="JMIR Res Protoc", year="2025", month="Mar", day="27", volume="14", pages="e58410", keywords="maternal health disparities", keywords="maternal near miss", keywords="minority health", keywords="mental health", keywords="narrative-based medicine", keywords="experiences", keywords="birthing experience", keywords="women", keywords="Black women", keywords="United States", keywords="maternal morbidity", keywords="patient-centered", keywords="racial", keywords="ethnic", keywords="disparities", keywords="socioeconomically", keywords="pregnancy", keywords="childbirth", keywords="postpartum", keywords="antenatal", abstract="Background: In the United States, Black women are 3-4 times more likely to experience maternal near miss (MNM) or severe maternal morbidity (SMM) than non-Hispanic White women. However, there is a limited narrative-based investigation into Black and other marginalized women's MNM experiences. Additionally, limited extant research on the impact of MNM and SMM on birthing women's families or support persons and health care providers precludes the development of multilevel, patient-centered methods to eliminate these racial or ethnic disparities. Objective: This paper presents the protocol for a study that aims to draw insights from the experiences of racially and socioeconomically diverse mothers with MNM and SMM, their family or support persons (eg, partners), and health care providers to inform legislation, clinical practice, and infrastructure for optimal social support using PRISMA-P (Preferred Reporting Items for Systematic review and Meta-Analysis Protocols) guidelines. Using a storytelling approach to assess participants' risk factors, document underlying causes, and research clinical causes of MNM, researchers hypothesize these data will inform policies to improve maternal conditions and provide safe and effective prevention and treatment options for birthing persons. Methods: Morehouse School of Medicine (MSM) will partner with health services and community-based organizations to promote inclusive participant recruitment for this multiphase study. In phase 1, qualitative interviews were conducted with birthing women (n?87) who have experienced MNM and SMM. In phase 2, we will conduct qualitative interviews with the following groups: birthing women's partners or support persons (n?50), health care providers serving birthing women (n?50), and adults who lost their mothers to pregnancy-related complications (n?50). In each phase, the total number of participants interviewed will be based on theoretical saturation, that is, the point in iterative data collection and analysis when all important insights have been exhausted from the data already available. Results: Recruitment for phase 1 started in July 2021. As of March 2024, we have recruited 87 racially and socioeconomically diverse birthing women. Of those, 74\% (64/87) self-identified as Black or African American, 20\% (17/87) as Hispanic or Latina, and 9\% (8/87) as Native American or Alaska Native. Severe preeclampsia accounted for 46\% (40/87) of participants' pregnancy-related adverse experiences. Qualitative interviews grounded in narrative-based medicine are ongoing. Recruitment for phase 2 will occur between July 2023 and December 2024. Study results will be published in peer-reviewed scientific journals. Conclusions: The findings from this research will deepen the understanding of how severe obstetric complications (1) are experienced by birthing women; (2) are perceived by their partners, support persons, and health providers; and (3) impact the lives of bereaved family and community members. ", doi="10.2196/58410", url="https://www.researchprotocols.org/2025/1/e58410" } @Article{info:doi/10.2196/60582, author="Rivas, Vincent Eric and Lesley, Ulf and Davoody, Nadia", title="Health Care Professionals' Perspectives on Using eHealth Tools in Advanced Home Care: Qualitative Interview Study", journal="JMIR Hum Factors", year="2025", month="Mar", day="24", volume="12", pages="e60582", keywords="eHealth", keywords="mobile health", keywords="mHealth", keywords="advanced home care", keywords="content analysis", keywords="nurse", keywords="staff-patient relationship", keywords="aging population", keywords="patient engagement", keywords="personalized care", keywords="patient experience", abstract="Background: The rising demand for advanced home care services, driven by an aging population and the preference for aging in place, presents both challenges and opportunities. While advanced home care can improve cost-effectiveness and patient outcomes, gaps remain in understanding how eHealth technologies can optimize these services. eHealth tools have the potential to offer personalized, coordinated care that increases patient engagement. However, research exploring health care professionals' (HCPs) perspectives on the use of eHealth tools in advanced home care and their impact on the HCP-patient relationship is limited. Objective: This study aims to explore HCPs' perspectives on using eHealth tools in advanced home care and these tools' impact on HCP-patient relationships. Methods: In total, 20 HCPs from 9 clinics specializing in advanced home care were interviewed using semistructured interviews. The discussions focused on their experiences with 2 eHealth tools: a mobile documentation tool and a mobile preconsultation form. The data were analyzed using content analysis to identify recurring themes. Results: The data analysis identified one main theme: optimizing health care with eHealth; that is, enhancing care delivery and overcoming challenges for future health care. Two subthemes emerged: (1) enhancing care delivery, collaboration, and overcoming adoption barriers and (2) streamlining implementation and advancing eHealth tools for future health care delivery. Five categories were also identified: (1) positive experiences and benefits, (2) interactions between HCPs and patients, (3) challenges and difficulties with eHealth tools, (4) integration into the daily workflow, and (5) future directions. Most HCPs expressed positive experiences with the mobile documentation tool, highlighting improved efficiency, documentation quality, and patient safety. While all found the mobile preconsultation form beneficial, patient-related factors limited its utility. Regarding HCP-patient relationships, interactions with patients remained unchanged with the implementation of both tools. HCPs successfully maintained their interpersonal skills and patient-centered approach while integrating eHealth tools into their practice. The tools allowed more focused, in-depth discussions, enhancing patient engagement without affecting relationships. Difficulties with the tools originated from tool-related issues, organizational challenges, or patient-related complexities, occasionally affecting the time available for direct patient interaction. Conclusions: The study underscores the importance of eHealth tools in enhancing advanced home care while maintaining the HCP-patient relationship. While eHealth tools modify care delivery techniques, they do not impact the core dynamics of the relationships between HCPs and patients. While most of the HCPs in the study had a positive attitude toward using the eHealth tools, understanding the challenges they encounter is crucial for improving user acceptance and success in implementation. Future development should focus on features that not only improve efficiency but also actively enhance HCP-patient relationships, such as facilitating more meaningful interactions and supporting personalized care in the advanced home care setting. ", doi="10.2196/60582", url="https://humanfactors.jmir.org/2025/1/e60582" } @Article{info:doi/10.2196/54516, author="Kong, Menglei and Wang, Yu and Li, Meixuan and Yao, Zhong", title="Mechanism Assessment of Physician Discourse Strategies and Patient Consultation Behaviors on Online Health Platforms: Mixed Methods Study", journal="J Med Internet Res", year="2025", month="Mar", day="19", volume="27", pages="e54516", keywords="online health consultation", keywords="physician discourse strategies", keywords="online physician-patient trust", keywords="shared decision-making", keywords="patient consultation behavior", abstract="Background: Online health platforms are currently experiencing significant growth. Patients can conveniently seek medical consulting services on such platforms. Against the backdrop of the thriving development of digital health care, the patterns of physician-patient communication are undergoing profound changes. It is imperative to focus on physician discourse strategies during online physician-patient interactions, which will improve the efficiency of physician-patient communication and achieve better management of the physician-patient relationship. Objective: This study aims to explore the influencing mechanism between physician discourse strategies and patient consultation behavior on online health platforms. Additionally, we explore the crucial mediating role of online physician-patient trust and the moderating role of shared decision-making in the online physician-patient communication process. Methods: We used a mixed research approach to explore the influencing mechanism. Data on physician basic attributes and physician-patient communication text records were collected from the Chunyu Doctor website using a web spider. The study obtained a total of 8628 interaction texts from January 2022 to July 2023. Physician discourse strategies (capacity-oriented strategy, quality-oriented strategy, and goodwill-oriented strategy), online physician-patient trust, and shared decision-making were captured through text mining and a random forest model. First, we employed text mining to extract the speech acts, modal resources, and special linguistic resources of each record. Then, using a well-trained random forest model, we captured the specific discourse strategy of each interaction text based on the learned features and patterns. The study generated 863 groups of physician samples with 17 data fields. The hypotheses were tested using an ``ordinary least squares'' model, and a stability test was conducted by replacing the dependent variable. Results: The capacity-oriented strategy, goodwill-oriented strategy, and quality-oriented strategy had significant effects on patient consultation behavior ($\beta$=.151, P=.007; $\beta$=.154, P<.001; and $\beta$=.17, P<.001, respectively). It should be noted that the anticipated strong effect of the capacity-oriented strategy on patient consultation behavior was not observed. Instead, the effects of the quality-oriented strategy and goodwill-oriented strategy were more prominent. Physician notification adequacy from shared decision-making moderated the effect between the goodwill-oriented strategy and patient consultation behavior ($\beta$=.172; P<.001). Additionally, patient expression adequacy from shared decision-making moderated the effect between the capacity-oriented strategy and patient consultation behavior ($\beta$=.124; P<.001), and between the goodwill-oriented strategy and patient consultation behavior ($\beta$=.104; P=.003). Online physician-patient trust played a significant mediating role between physician discourse strategies and patient consultation behavior. Conclusions: The study findings suggest significant implications for stimulating patient consultation behavior on online health platforms by providing guidance on effective discourse strategies for physicians, thus constructing a trustworthy physician image, improving the physician-patient relationship, and increasing platform traffic. ", doi="10.2196/54516", url="https://www.jmir.org/2025/1/e54516" } @Article{info:doi/10.2196/57697, author="Haegens, L. Lex and Huiskes, B. Victor J. and van den Bemt, F. Bart J. and Bekker, L. Charlotte", title="Factors Influencing the Intentions of Patients With Inflammatory Rheumatic Diseases to Use a Digital Human for Medication Information: Qualitative Study", journal="J Med Internet Res", year="2025", month="Mar", day="13", volume="27", pages="e57697", keywords="digital human", keywords="information provision", keywords="intention to use", keywords="qualitative study", keywords="focus groups", keywords="drug-related problems", keywords="medication safety", keywords="safety information", keywords="information seeking", keywords="Netherlands", keywords="Pharmacotherapy", keywords="medication", keywords="telehealth", keywords="communication technologies", keywords="medication information", keywords="rheumatic diseases", keywords="rheumatology", abstract="Background: Introduction: Patients with inflammatory rheumatic diseases (IRDs) frequently experience drug-related problems (DRPs). DRPs can have negative health consequences and should be addressed promptly to prevent complications. A digital human, which is an embodied conversational agent, could provide medication-related information in a time- and place-independent manner to support patients in preventing and decreasing DRPs. Objective: This study aims to identify factors that influence the intention of patients with IRDs to use a digital human to retrieve medication-related information. Methods: A qualitative study with 3 in-person focus groups was conducted among adult patients diagnosed with an IRD in the Netherlands. The prototype of a digital human is an innovative tool that provides spoken answers to medication-related questions and provides information linked to the topic, such as (instructional) videos, drug leaflets, and other relevant sources. Before the focus group, participants completed a preparatory exercise at home to become familiar with the digital human. A semistructured interview guide based on the Proctor framework for implementation determinants was used to interview participants about the acceptability, adoption, appropriateness, costs, feasibility, fidelity, penetration, and sustainability of the digital human. Focus groups were recorded, transcribed, and analyzed thematically. Results: The participants included 22 patients, with a median age of 68 (IQR 52-75) years, of whom 64\% (n=22) were female. In total, 6 themes describing factors influencing patients' intention to use a digital human were identified: (1) the degree to which individual needs for medication-related information are met; (2) confidence in one's ability to use the digital human; (3) the degree to which using the digital human resembles interacting with a human; (4) technical functioning of the digital human; (5) privacy and security; and (6) expected benefit of using the digital human. Conclusions: The intention of patients with IRDs to use a novel digital human to retrieve medication-related information was influenced by factors related to each patient's information needs and confidence in their ability to use the digital human, features of the digital human, and the expected benefits of using the digital human. These identified themes should be considered during the further development of the digital human and during implementation to increase intention to use and future adoption. Thereafter, the effect of applying a digital human as an instrument to improve patients' self-management regarding DRPs could be researched. ", doi="10.2196/57697", url="https://www.jmir.org/2025/1/e57697" } @Article{info:doi/10.2196/58882, author="Kramer, L. Melissa and Polo, Medina Jose and Kumar, Nishant and Mulgirigama, Aruni and Benkiran, Amina", title="Living With and Managing Uncomplicated Urinary Tract Infection: Mixed Methods Analysis of Patient Insights From Social Media", journal="J Med Internet Res", year="2025", month="Mar", day="11", volume="27", pages="e58882", keywords="acute cystitis", keywords="bladder infection", keywords="HCP interactions", keywords="urology", keywords="patient experience", keywords="patient insights", keywords="social media", keywords="uncomplicated urinary tract infection", keywords="urinary tract infection", keywords="urinary", keywords="women", keywords="quality of life", keywords="disease management", keywords="cystitis", keywords="healthcare professional", keywords="self-management", keywords="patient behavior", keywords="UTI", abstract="Background: Uncomplicated urinary tract infections (uUTIs) affect more than half of women in their lifetime and can impact on quality of life. We analyzed social media posts discussing uUTIs to gather insights into the patient experience, including aspects of their disease management journey and associated opinions and concerns. Objective: This study aims to gather patient experience insights by analyzing social media posts that discussed uUTI. Methods: A search string (``urinary tract infection'' [UTI] or ``bladder infection'' or ``cystitis'' or ``UTI'' not ``interstitial cystitis'') was used to identify posts from public blogs and patient forums (June 2021 to June 2023). Posts were excluded if they were not written in English or discussed complicated UTI (posts that mentioned ``pregnancy'' or ``pregnant'' or ``trimester'' or ``catheter'' or ``interstitial''). Posts were limited to publicly available sources and anonymized. The primary objective was to gather patient perspectives on key elements of the uUTI experience, including health care professional (HCP) interactions, diagnosis, treatment, and recurrence. Results: In total, more than 42,000 unique posts were identified (mostly from reddit.com; 29,506/42,265, 70\%) and >3600 posts were analyzed. Posts were most commonly from users in the United States (6707/11,180, 60\%), the United Kingdom (2261/11,180, 20\%), Canada (509/11,180, 5\%), Germany (356/11,180, 3\%), or India (320/11,180, 3\%). Six main themes were identified: symptom awareness and information seeking, HCP interactions, diagnosis and management challenges, management with antibiotics, self-management, and challenges with recurrent UTI. Most posts highlighted the importance of seeking professional medical advice, while some patients raised concerns regarding their HCP interactions and lack of shared decision-making. Patients searched for advice and guidance on the web prior to consulting an HCP, described their symptoms, and discussed lifestyle adjustments. Most patients tried self-management and shared their experiences with nonprescribed treatment options. There was general agreement among posts that antibiotics are necessary to cure UTIs and prevent associated complications. Conclusions: Social media posts provide valuable insight into the experiences and opinions of patients with uUTIs in Canada, Germany, India, the United Kingdom, and the United States. The insights from this study provide a more complete picture of patient behaviors and highlight the potential for HCP and patient education, as well as better communication through shared decision-making to improve care. ", doi="10.2196/58882", url="https://www.jmir.org/2025/1/e58882" } @Article{info:doi/10.2196/59686, author="Moody, Louise and Clarke, Samantha and Compton, Matt and Hughson-Gill, Rachael and Boardman, Felicity and Clark, Corinna and Holder, Pru and Bonham, R. James and Chudleigh, Jane", title="Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study", journal="J Particip Med", year="2025", month="Mar", day="6", volume="17", pages="e59686", keywords="extended genetic testing", keywords="next-generation sequencing", keywords="cystic fibrosis", keywords="decision-making", keywords="engagement", abstract="Background: Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and drawbacks. To inform these decisions, it is important to consider the family experience of screening and the views of the public. Engaging in public dialogue can be difficult. The conditions, screening processes, and associated moral and ethical considerations are complex. Objective: This study aims to develop a stand-alone online resource to enable a range of stakeholders to understand whether and how next-generation sequencing should be incorporated into the CF screening algorithm. Methods: Around 4 development workshops with policymakers, parents, and other stakeholders informed the design of an interactive activity, including the structure, content, and questions posed. Stakeholders were recruited to take part in the development workshops via purposeful and snowball sampling methods to achieve a diversity of views across roles and organizations, with email invitations sent to representative individuals with lived, clinical, and academic experience related to CF and screening. Ten stakeholders informed the development process including those with lived experience of CF (2/10, 20\%), clinicians (2/10, 20\%), and representatives from relevant government, charity, and research organizations (6/10, 60\%). Vignettes constructed using interview data and translated into scripts were recorded to provide short films to represent and provoke consideration of families' experiences. Participants were recruited (n=6, adults older than 18 years) to test the resulting resource. Study advertisements were circulated via physical posters and digital newsletters to recruit participants who self-identified as having a reading difficulty or having English as a second language. Results: An open access online resource, ``Cystic Fibrosis Newborn Screening: You Decide,'' was developed and usability and acceptability tested to provide the ``user'' (eg, a parent, the general public, or a health care professional) with an interactive scenario-based presentation of the potential outcomes of extended genetic testing, allowing them to visualize the impact on families. This included a learning workbook that explains key concepts and processes. The resulting tool facilitates public engagement with and understanding of complex genetic and screening concepts. Conclusions: Online resources such as the one developed during this work have the potential to help people form considered views and facilitate access to the perspectives of parents and the wider public on genetic testing. These may be otherwise difficult to obtain but are of importance to health care professionals and policymakers. Trial Registration: ClinicalTrials.gov NCT06299566; https://clinicaltrials.gov/study/NCT06299566 ", doi="10.2196/59686", url="https://jopm.jmir.org/2025/1/e59686", url="http://www.ncbi.nlm.nih.gov/pubmed/40053726" } @Article{info:doi/10.2196/68083, author="Parciak, Marcel and Pierlet, No{\"e}lla and Peeters, M. Liesbet", title="Empowering Health Care Actors to Contribute to the Implementation of Health Data Integration Platforms: Retrospective of the medEmotion Project", journal="J Med Internet Res", year="2025", month="Mar", day="4", volume="27", pages="e68083", keywords="data science", keywords="health data integration", keywords="health data platform", keywords="real-world evidence", keywords="health care", keywords="health data", keywords="data", keywords="integration platforms", keywords="collaborative", keywords="platform", keywords="Belgium", keywords="Europe", keywords="personas", keywords="communication", keywords="health care providers", keywords="hospital-specific requirements", keywords="digital health", doi="10.2196/68083", url="https://www.jmir.org/2025/1/e68083", url="http://www.ncbi.nlm.nih.gov/pubmed/40053761" } @Article{info:doi/10.2196/67794, author="Wellman, L. Mariah and Owens, M. Camilla and Holton, E. Avery and Kaphingst, A. Kimberly", title="Examining BRCA Previvors' Social Media Content Creation as a Form of Self and Community Care: Qualitative Interview Study", journal="J Med Internet Res", year="2025", month="Mar", day="3", volume="27", pages="e67794", keywords="BRCA", keywords="breast cancer", keywords="genetic testing", keywords="social media", keywords="breast cancer gene", keywords="content creation", keywords="self care", keywords="community care", keywords="qualitative interview", keywords="qualitative", keywords="interview", keywords="previvors", keywords="cancer previvors", keywords="genetic mutations", keywords="online", keywords="content", keywords="interviews", keywords="thematic analysis", abstract="Background: Genetic testing has become a common way of identifying a woman's risk of developing hereditary breast and ovarian cancer; however, not all medical providers have the necessary information to support patients interested in genetic testing, nor do they always have the proper information for patients once they have been diagnosed. Therefore, many ``previvors''---the name given to those who have tested positive for the BRCA genetic mutation---have taken to social media to inform others about the importance of genetic testing and explain to them how to understand their test results. Historically, those desiring to speak about their medical issues online have sought out structured support groups or chat rooms; however, many previvors today are instead posting on their own personal social media accounts and creating more niche communities. Objective: This study aimed to examine why BRCA previvors are sharing content on their personal social media accounts and how posting online in this way serves a purpose for their larger community. Methods: A total of 16 semistructured interviews were conducted with individuals who posted about their experience being diagnosed with the BRCA genetic mutation and their subsequent treatment on their personal social media accounts, specifically for followers interested in their medical journey. The interviews were recorded, transcribed, and coded by an experienced qualitative researcher and a graduate student using inductive techniques, and a reflexive thematic analysis was applied to the transcripts. Results: The results suggest BRCA previvors want to control the narrative around their personalized medical experiences rather than participating in existing groups or chat rooms. Controlling their own story, rather than adding to existing narratives, gives previvors a sense of control. It also allows them to set boundaries around the types of experiences they have online when sharing their medical journey. Finally, previvors said they feel they are serving the larger BRCA community by each sharing their individual journeys, to hopefully avoid stereotyping and homogenizing the experience of patients with BRCA genetic mutations. Conclusions: Research with the objective of understanding the experiences of BRCA previvors should include exploring how and why they talk about their journeys, especially due to the lack of knowledge BRCA previvors say many of their medical providers have. We suggest further research should examine how other patients with the BRCA genetic mutation, especially racial and ethnic minority patients, are navigating their own content creation, especially considering content moderation policies that social media platforms are continuing to implement that directly impact users' ability to share about their medical experiences. ", doi="10.2196/67794", url="https://www.jmir.org/2025/1/e67794", url="http://www.ncbi.nlm.nih.gov/pubmed/40053732" } @Article{info:doi/10.2196/60096, author="de Thurah, Lena and Kiekens, Glenn and Weermeijer, Jeroen and Uyttebroek, Lotte and Wampers, Martien and Bonnier, Rafa{\"e}l and Myin-Germeys, Inez", title="Understanding Appropriation of Digital Self-Monitoring Tools in Mental Health Care: Qualitative Analysis", journal="JMIR Hum Factors", year="2025", month="Mar", day="3", volume="12", pages="e60096", keywords="digital self-monitoring", keywords="technology appropriation", keywords="experience sampling method", keywords="mental health care", keywords="mental health", keywords="self-monitoring", keywords="digital health", keywords="adoption", keywords="implementation", keywords="thematic", keywords="usability", keywords="interview", keywords="experience", keywords="attitude", keywords="opinion", keywords="perception", keywords="perspective", keywords="acceptance", abstract="Background: Digital self-monitoring tools, such as the experience sampling method (ESM), enable individuals to collect detailed information about their mental health and daily life context and may help guide and support person-centered mental health care. However, similar to many digital interventions, the ESM struggles to move from research to clinical integration. To guide the implementation of self-monitoring tools in mental health care, it is important to understand why and how clinicians and clients adopted, adapted, and incorporated these tools in practice. Objective: Therefore, this study examined how clinicians and clients within a psychiatric center appropriated an ESM-based self-monitoring tool within their therapy. Methods: Twelve clinicians and 24 clients participated in the piloting of the ESM tool, IMPROVE. After utilizing the tool, 7 clinicians and 11 clients took part in semistructured interviews. A thematic framework analysis was performed focusing on participants' prior knowledge and expectations, actual use in practice, and potential future use of ESM tools. Results: Many participants experienced that the ESM tool provided useful information about clients' mental health, especially when clinicians and clients engaged in collaborative data interpretation. However, clinicians experienced several mismatches between system usability and their technical competencies, and many clients found it difficult to comply with the self-assessments. Importantly, most participants wanted to use digital self-monitoring tools in the future. Conclusions: Clinicians' and clients' choice to adopt and integrate self-monitoring tools in their practice seems to depend upon the perceived balance between the added benefits and the effort required to achieve them. Enhancing user support or redesigning ESM tools to reduce workload and data burden could help overcome implementation barriers. Future research should involve end users in the development of ESM self-monitoring tools for mental health care and further investigate the perspectives of nonadopters. ", doi="10.2196/60096", url="https://humanfactors.jmir.org/2025/1/e60096" } @Article{info:doi/10.2196/63466, author="Steele, Brian and Fairie, Paul and Kemp, Kyle and D'Souza, G. Adam and Wilms, Matthias and Santana, Jose Maria", title="Identifying Patient-Reported Care Experiences in Free-Text Survey Comments: Topic Modeling Study", journal="JMIR Med Inform", year="2025", month="Feb", day="24", volume="13", pages="e63466", keywords="natural language processing", keywords="patient-reported experience", keywords="topic models", keywords="inpatient", keywords="artificial intelligence", keywords="AI", keywords="patient reported", keywords="feedback", keywords="survey", keywords="patient experiences", keywords="bidirectional encoder representations from transformers", keywords="BERT", keywords="sentiment analysis", keywords="pediatric caregivers", keywords="patient safety", keywords="safety", abstract="Background: Patient-reported experience surveys allow administrators, clinicians, and researchers to quantify and improve health care by receiving feedback directly from patients. Existing research has focused primarily on quantitative analysis of survey items, but these measures may collect optional free-text comments. These comments can provide insights for health systems but may not be analyzed due to limited resources and the complexity of traditional textual analysis. However, advances in machine learning--based natural language processing provide opportunities to learn from this traditionally underused data source. Objective: This study aimed to apply natural language processing to model topics found in free-text comments of patient-reported experience surveys. Methods: Consumer Assessment of Healthcare Providers and Systems--derived patient experience surveys were collected and linked to administrative inpatient records by the provincial health services organization responsible for inpatient care. Unsupervised topic modeling with automated labeling was performed with BERTopic. Sentiment analysis was performed to further assist in topic description. Results: Between April 2016 and February 2020, 43.4\% (43,522/100,272) adult patients and 46.9\% (3501/7464) pediatric caregivers included free-text responses on completed patient experience surveys. Topic models identified 86 topics among adult survey responses and 35 topics among pediatric responses that included elements of care not currently surveyed by existing questionnaires. Frequent topics were generally positive. Conclusions: We found that with limited tuning, BERTopic identified care experience topics with interpretable automated labeling. Results are discussed in the context of person-centered care, patient safety, and health care quality improvement. Furthermore, we note the opportunity for the identification of temporal and site-specific trends as a method to identify patient care and safety concerns. As the use of patient experience measurement increases in health care, we discuss how machine learning can be leveraged to provide additional insight on patient experiences. ", doi="10.2196/63466", url="https://medinform.jmir.org/2025/1/e63466" } @Article{info:doi/10.2196/72007, author="Vordenberg, E. Sarah and Nichols, Julianna and Marshall, D. Vincent and Weir, Rebecca Kristie and Dorsch, P. Michael", title="Authors' Reply: Enhancing the Clinical Relevance of Al Research for Medication Decision-Making", journal="J Med Internet Res", year="2025", month="Feb", day="18", volume="27", pages="e72007", keywords="older adults", keywords="artificial intelligence", keywords="vignette", keywords="pharmacology", keywords="medication", keywords="decision-making", keywords="aging", keywords="attitude", keywords="perception", keywords="perspective", keywords="electronic heath record", doi="10.2196/72007", url="https://www.jmir.org/2025/1/e72007", url="http://www.ncbi.nlm.nih.gov/pubmed/39964740" } @Article{info:doi/10.2196/70657, author="Wang, Qi and Chen, Mingxian", title="Enhancing the Clinical Relevance of Al Research for Medication Decision-Making", journal="J Med Internet Res", year="2025", month="Feb", day="18", volume="27", pages="e70657", keywords="older adults", keywords="artificial intelligence", keywords="medication", keywords="decision-making", keywords="data security", keywords="patient trust", doi="10.2196/70657", url="https://www.jmir.org/2025/1/e70657", url="http://www.ncbi.nlm.nih.gov/pubmed/39964744" } @Article{info:doi/10.2196/56038, author="Li, Xiancheng and Vaghi, Emanuela and Pasi, Gabriella and Coulson, S. Neil and De Simoni, Anna and Viviani, Marco and ", title="Understanding the Engagement and Interaction of Superusers and Regular Users in UK Respiratory Online Health Communities: Deep Learning--Based Sentiment Analysis", journal="J Med Internet Res", year="2025", month="Feb", day="13", volume="27", pages="e56038", keywords="social media", keywords="online health communities", keywords="social network analysis", keywords="sentiment analysis", keywords="bio-bidirectional encoder representations from transformers", keywords="asthma", keywords="chronic obstructive pulmonary disease", abstract="Background: Online health communities (OHCs) enable people with long-term conditions (LTCs) to exchange peer self-management experiential information, advice, and support. Engagement of ``superusers,'' that is, highly active users, plays a key role in holding together the community and ensuring an effective exchange of support and information. Further studies are needed to explore regular users' interactions with superusers, their sentiments during interactions, and their ultimate impact on the self-management of LTCs. Objective: This study aims to gain a better understanding of sentiment distribution and the dynamic of sentiment of posts from 2 respiratory OHCs, focusing on regular users' interaction with superusers. Methods: We conducted sentiment analysis on anonymized data from 2 UK respiratory OHCs hosted by Asthma UK (AUK), and the British Lung Foundation (BLF) charities between 2006-2016 and 2012-2016, respectively, using the Bio-Bidirectional Encoder Representation from Transformers (BioBERT), a pretrained language representation model. Given the scarcity of health-related labeled datasets, BioBERT was fine-tuned on the COVID-19 Twitter Dataset. Positive, neutral, and negative sentiments were categorized as 1, 0, and --1, respectively. The average sentiment of aggregated posts by regular users and superusers was then calculated. Superusers were identified based on a definition already used in our previous work (ie, ``the 1\% users with the largest number of posts over the observation period'') and VoteRank, (ie, users with the best spreading ability). Sentiment analyses of posts by superusers defined with both approaches were conducted for correlation. Results: The fine-tuned BioBERT model achieved an accuracy of 0.96. The sentiment of posts was predominantly positive (60\% and 65\% of overall posts in AUK and BLF, respectively), remaining stable over the years. Furthermore, there was a tendency for sentiment to become more positive over time. Overall, superusers tended to write shorter posts characterized by positive sentiment (63\% and 67\% of all posts in AUK and BLF, respectively). Superusers defined by posting activity or VoteRank largely overlapped (61\% in AUK and 79\% in BLF), showing that users who posted the most were also spreaders. Threads initiated by superusers typically encouraged regular users to reply with positive sentiments. Superusers tended to write positive replies in threads started by regular users whatever the type of sentiment of the starting post (ie, positive, neutral, or negative), compared to the replies by other regular users (62\%, 51\%, 61\% versus 55\%, 45\%, 50\% in AUK; 71\%, 62\%, 64\% versus 65\%, 56\%, 57\% in BLF, respectively; P<.001, except for neutral sentiment in AUK, where P=.36). Conclusions: Network and sentiment analyses provide insight into the key sustaining role of superusers in respiratory OHCs, showing they tend to write and trigger regular users' posts characterized by positive sentiment. ", doi="10.2196/56038", url="https://www.jmir.org/2025/1/e56038" } @Article{info:doi/10.2196/64290, author="Mendel, Tamir and Singh, Nina and Mann, M. Devin and Wiesenfeld, Batia and Nov, Oded", title="Laypeople's Use of and Attitudes Toward Large Language Models and Search Engines for Health Queries: Survey Study", journal="J Med Internet Res", year="2025", month="Feb", day="13", volume="27", pages="e64290", keywords="large language model", keywords="artificial intelligence", keywords="LLMs", keywords="search engine", keywords="Google", keywords="internet", keywords="online health information", keywords="United States", keywords="survey", keywords="mobile phone", abstract="Background: Laypeople have easy access to health information through large language models (LLMs), such as ChatGPT, and search engines, such as Google. Search engines transformed health information access, and LLMs offer a new avenue for answering laypeople's questions. Objective: We aimed to compare the frequency of use and attitudes toward LLMs and search engines as well as their comparative relevance, usefulness, ease of use, and trustworthiness in responding to health queries. Methods: We conducted a screening survey to compare the demographics of LLM users and nonusers seeking health information, analyzing results with logistic regression. LLM users from the screening survey were invited to a follow-up survey to report the types of health information they sought. We compared the frequency of use of LLMs and search engines using ANOVA and Tukey post hoc tests. Lastly, paired-sample Wilcoxon tests compared LLMs and search engines on perceived usefulness, ease of use, trustworthiness, feelings, bias, and anthropomorphism. Results: In total, 2002 US participants recruited on Prolific participated in the screening survey about the use of LLMs and search engines. Of them, 52\% (n=1045) of the participants were female, with a mean age of 39 (SD 13) years. Participants were 9.7\% (n=194) Asian, 12.1\% (n=242) Black, 73.3\% (n=1467) White, 1.1\% (n=22) Hispanic, and 3.8\% (n=77) were of other races and ethnicities. Further, 1913 (95.6\%) used search engines to look up health queries versus 642 (32.6\%) for LLMs. Men had higher odds (odds ratio [OR] 1.63, 95\% CI 1.34-1.99; P<.001) of using LLMs for health questions than women. Black (OR 1.90, 95\% CI 1.42-2.54; P<.001) and Asian (OR 1.66, 95\% CI 1.19-2.30; P<.01) individuals had higher odds than White individuals. Those with excellent perceived health (OR 1.46, 95\% CI 1.1-1.93; P=.01) were more likely to use LLMs than those with good health. Higher technical proficiency increased the likelihood of LLM use (OR 1.26, 95\% CI 1.14-1.39; P<.001). In a follow-up survey of 281 LLM users for health, most participants used search engines first (n=174, 62\%) to answer health questions, but the second most common first source consulted was LLMs (n=39, 14\%). LLMs were perceived as less useful (P<.01) and less relevant (P=.07), but elicited fewer negative feelings (P<.001), appeared more human (LLM: n=160, vs search: n=32), and were seen as less biased (P<.001). Trust (P=.56) and ease of use (P=.27) showed no differences. Conclusions: Search engines are the primary source of health information; yet, positive perceptions of LLMs suggest growing use. Future work could explore whether LLM trust and usefulness are enhanced by supplementing answers with external references and limiting persuasive language to curb overreliance. Collaboration with health organizations can help improve the quality of LLMs' health output. ", doi="10.2196/64290", url="https://www.jmir.org/2025/1/e64290", url="http://www.ncbi.nlm.nih.gov/pubmed/39946180" } @Article{info:doi/10.2196/62750, author="Wallraf, Simon and K{\"o}themann, Sara and Wiesemann, Claudia and W{\"o}hlke, Sabine and Dierks, Marie-Luise and Schmidt, Andrea Marion and van Gils-Schmidt, Jasper Henk and Lander, Jonas", title="Digital Transformation in Patient Organizations: Interview and Focus Group Study", journal="J Med Internet Res", year="2025", month="Feb", day="13", volume="27", pages="e62750", keywords="patient organization", keywords="patient support", keywords="digitalization", keywords="digital transformation", keywords="health research", abstract="Background: Patient organizations (POs) are an integral part of the health care landscape, serving as advocates and support systems for patients and their families. As the digitalization of health care accelerates, POs are challenged to adapt their diverse roles to digital formats. However, the extent and form of POs' digital adaptation and the challenges POs encounter in their digital transformation remain unexplored. Objective: This study aims to investigate the digital transformation processes within POs. We examined the types of digital activities and processes implemented, people involved in respective tasks, challenges encountered, and attitudes toward the digitalization of POs. Methods: The study was carried out by the multicenter interdisciplinary research network Pandora. We adopted a qualitative exploratory approach by conducting 37 semistructured interviews and 2 focus groups with representatives and members of POs in Germany. Results were obtained using a deductive-inductive approach based on a qualitative content analysis. Methods and results were reported in accordance with the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist. Results: POs primarily apply basic digital tools to engage in communication, health education, and information dissemination. Some also develop specific mobile apps and collect health data through patient registries. Volunteers cover a considerable part of the workload. Sometimes, POs collaborate with external partners, such as health professionals or other nonprofit organizations. Furthermore, many (13/46, 28\%) interviewees referred to the importance of involving members in digitalization efforts to better meet their needs. However, they described the actual practices used to involve members in, for example, developing digital services as limited, passive, or implicit. When evaluating digital transformation processes, representatives and members of POs expressed generally positive attitudes and acknowledged their potential to improve the accessibility of support services, management efficiency, and outreach. Still, resource constraints; the complexity of digital initiatives; and accessibility issues for certain demographic groups, especially older persons, were frequently mentioned as challenges. Several (15/46, 33\%) interviewees highlighted POs' increasing responsibility to support their members' digital competencies and digital health literacy. Conclusions: POs are actively involved in the digital transformation of health services. To navigate challenges and further shape and sustain digital activities and processes, POs may benefit from governance frameworks, that is, a clear plan outlining with whom, how, and with what objectives digital projects are being realized. Support from public, scientific, and policy institutions to enhance the process through training, mentorship, and fostering collaborative networks seems warranted. ", doi="10.2196/62750", url="https://www.jmir.org/2025/1/e62750", url="http://www.ncbi.nlm.nih.gov/pubmed/39946181" } @Article{info:doi/10.2196/63610, author="Seo, Woosuk and Jain, Shruti and Le, Vivian and Li, Jiaqi and Zhang, Zhan and Singh, Hardeep and Pasupathy, Kalyan and Mahajan, Prashant and Park, Young Sun", title="Designing Patient-Centered Interventions for Emergency Care: Participatory Design Study", journal="JMIR Form Res", year="2025", month="Feb", day="12", volume="9", pages="e63610", keywords="emergency department", keywords="participatory design", keywords="patient", keywords="technology", keywords="intervention", abstract="Background: Emergency departments (EDs) are high-pressure environments where clinicians diagnose patients under significant constraints, including limited medical histories, severe time pressures, and frequent interruptions. Current ED care practices often inadequately support meaningful patient participation. Most interventions prioritize clinical workflow and health care provider communication, inadvertently overlooking patients' needs. Additionally, patient-facing technologies in EDs are typically developed without meaningful patient input, leading to solutions that may not effectively address patients' specific challenges. To enhance both patient-centered care practices and the diagnosis process in EDs, patient involvement in technology design is essential to ensure their needs during emergency care are understood and addressed. Objective: This study aimed to invite ED patients to participatory design sessions, identify their needs during ED visits, and present potential design guidelines for technological interventions to address these needs. Methods: We conducted 8 design sessions with 36 ED patients and caregivers to validate their needs and identify considerations for designing patient-centered interventions to improve diagnostic safety. We used 10 technological intervention ideas as probes for a needs evaluation of the study participants. Participants discussed the use cases of each intervention idea to assess their needs during the ED care process. We facilitated co-design activities with the participants to improve the technological intervention designs. We audio- and video-recorded the design sessions. We then analyzed session transcripts, field notes, and design sketches. Results: On the basis of ED patients' feedback and evaluation of our intervention designs, we found the 3 most preferred intervention ideas that addressed the common challenges ED patients experience. We also identified 4 themes of ED patients' needs: a feeling of inclusion in the ED care process, access to sources of medical information to enhance patient comprehension, addressing patient anxiety related to information overload and privacy concerns, and ensuring continuity in care and information. We interpreted these as insights for designing technological interventions for ED patients. Therefore, on the basis of the findings, we present five considerations for designing better patient-centered interventions in the ED care process: technology-based interventions should (1) address patients' dynamic needs to promote continuity in care; (2) consider the amount and timing of information that patients receive; (3) empower patients to be more active for better patient safety and care quality; (4) optimize human resources, depending on patients' needs; and (5) be designed with the consideration of patients' perspectives on implementation. Conclusions: This study provides unique insights for designing technological interventions to support ED diagnostic processes. By inviting ED patients into the design process, we present unique insights into the diagnostic process and design considerations for designing novel technological interventions to enhance patient safety. International Registered Report Identifier (IRRID): RR2-10.2196/55357 ", doi="10.2196/63610", url="https://formative.jmir.org/2025/1/e63610" } @Article{info:doi/10.2196/67289, author="Elkourdi, Farah and Asan, Onur", title="Community Caregivers' Perspectives on Health IT Use for Children With Medical Complexity: Qualitative Interview Study", journal="JMIR Pediatr Parent", year="2025", month="Feb", day="10", volume="8", pages="e67289", keywords="pediatric care", keywords="children with medical complexity", keywords="family-centered care", keywords="health information technology", keywords="health care software solutions", keywords="mobile phone", keywords="artificial intelligence", abstract="Background: Children with medical complexity represent a unique pediatric population requiring extensive health care needs and care coordination. Children with medical complexities have multiple significant chronic health problems that affect multiple organ systems and result in functional limitations and high health care needs or use. Often, there is a need for medical technology and total care for activities of daily living, much of which is provided at home by family and caregivers. Health IT (HIT) is a broad term that includes various technologies, such as patient portals, telemedicine, and mobile health apps. These tools can improve the care of children with medical complexity by enhancing communication, information exchange, medical safety, care coordination, and shared decision-making. In this study, we identified children with medical complexity as children aged <21 years who have >3 chronic health conditions. Community caregivers contribute to the care management of children with medical complexity, serving as advocates and coordinators, primary sources of information about children's needs, and facilitators of access to care. They are often the first point of contact for the families of children with medical complexity, particularly in vulnerable communities, including families in rural areas, low-income households, and non--English-speaking immigrant populations. Objective: This study aims to introduce the HIT needs and preferences for children with medical complexity from the perspective of community caregivers. By including their perspective on HIT development, we can better appreciate the challenges they face, the insights they offer, and the ways in which they bridge gaps in care, support, and resources. Methods: We conducted semistructured interviews (n=12) with formal community caregivers of children with medical complexity populations from a parent advocacy network on the US East Coast. Interviews were audio recorded via Zoom and then transcribed. An inductive thematic analysis was conducted to reveal HIT challenges and preferences for improving the care of children with medical complexity. Results: We categorized the interview results into themes and subthemes. There are four main themes: (1) telehealth transforming care for children with medical complexity during the COVID-19 pandemic, (2) suggested tools and technologies for care for children with medical complexity, (3) HIT feature preferences, and (4) transition to adult care. Each theme had multiple subthemes capturing all details related to design features of needed technologies. Conclusions: The study emphasizes the need to develop and enhance HIT for the care of children with medical complexity. The identified themes can serve as design guidelines for designers by establishing a foundation for user-centered HIT tools to effectively support children with medical complexity and their families. Telehealth and mobile health apps could improve care management and quality of life for children with medical complexity. ", doi="10.2196/67289", url="https://pediatrics.jmir.org/2025/1/e67289" } @Article{info:doi/10.2196/54973, author="Kariotis, Timothy and Prictor, Megan and Gray, Kathleen and Chang, Shanton", title="Patient-Accessible Electronic Health Records and Information Practices in Mental Health Care Contexts: Scoping Review", journal="J Med Internet Res", year="2025", month="Feb", day="7", volume="27", pages="e54973", keywords="patient-accessible electronic health records", keywords="patient portals", keywords="psychiatry", keywords="mental health", keywords="health informatics", keywords="mental illness", keywords="scoping review", abstract="Background: Patients are increasingly being provided with access to their electronic health records. However, in mental health care contexts, concerns have been raised due to a perception that such access would pose risks to patients, third parties, and the therapeutic relationship. These perceived risks may affect the information practices of health care professionals (HCPs) and patients, such as how they document, share, and use information in mental health care services with a patient-accessible electronic health record (PAEHR). Although there is growing research interest in PAEHRs, no study has specifically examined how they impact information practices. Understanding the impacts on information practices may help explain other outcomes of implementing PAEHRs and inform their design. Objective: This scoping review aimed to explore the research on PAEHRs in mental health care contexts and how PAEHRs affect information practices of HCPs and patients in this context. Methods: A scoping review was considered the most appropriate method due to the relatively recent adoption of PAEHRs in mental health care contexts and the heterogeneous nature of the evidence base. A comprehensive search of electronic databases was conducted for original empirical studies that described the use of PAEHRs or associated systems in mental health care contexts. One author reviewed all full texts, with 3 other authors reviewing a subset of studies. The study characteristics and findings were documented, and a thematic synthesis and textual narrative analysis were used to develop descriptive and analytical themes that addressed the research questions. Results: A total of 66 studies were considered eligible and included in the analysis. The impact of PAEHRs on information practices in mental health care contexts included the following: (1) they may change how HCPs document patient information, including a reduction in detail and a focus on information perceived by HCPs as objective rather than subjective; (2) they may negatively impact workflows due to changes in documentation practices and limited guidance for HCPs on how to use PAEHRs; and (3) they may contribute to improved communication between HCPs and patients, including constructive disagreements regarding what is documented in the health record. The changes to HCP information practices were influenced by a concern for the therapeutic relationship and patient safety. Furthermore, PAEHRs supported new information practices for patients, such as using their PAEHR to prepare for clinical encounters. Conclusions: We have identified several ways in which PAEHRs shape the information practices of HCPs and patients in the mental health context. These findings can inform the design of PAEHRs to promote information practices that contribute to improving the quality of mental health care. Further research is necessary to understand how changes in information practices due to the implementation of PAEHRs impact clinical outcomes and patient experiences of care. ", doi="10.2196/54973", url="https://www.jmir.org/2025/1/e54973", url="http://www.ncbi.nlm.nih.gov/pubmed/39918859" } @Article{info:doi/10.2196/60777, author="de Ligt, M. Kelly and Hommes, Saar and Vromans, D. Ruben and Boomstra, Eva and van de Poll, V. Lonneke and Krahmer, J. Emiel", title="Improving the Implementation of Patient-Reported Outcome Measure in Clinical Practice: Tackling Current Challenges With Innovative Digital Communication Technologies", journal="J Med Internet Res", year="2025", month="Feb", day="5", volume="27", pages="e60777", keywords="patient reported outcome measures", keywords="quality of life", keywords="health communication", keywords="delivery of health care", keywords="digital sciences", keywords="clinical practice: patient reported outcomes", keywords="patient reported outcome", keywords="digital communication", keywords="communication", keywords="health management", keywords="digital technologies", doi="10.2196/60777", url="https://www.jmir.org/2025/1/e60777" } @Article{info:doi/10.2196/66666, author="Rudin, S. Robert and Herman, M. Patricia and Vining, Robert", title="Addressing the ``Black Hole'' of Low Back Pain Care With Clinical Decision Support: User-Centered Design and Initial Usability Study", journal="JMIR Form Res", year="2025", month="Feb", day="4", volume="9", pages="e66666", keywords="low back pain", keywords="clinical decision support", keywords="user-centered design", keywords="usability", keywords="back pain", keywords="low back pain care", keywords="pain", keywords="clinical decision", keywords="societal burden", keywords="substantial", keywords="burden", keywords="evidence-based", keywords="treatment", keywords="diagnosis", keywords="support tool", keywords="clinicians", keywords="chiropractic", keywords="chiropractor", keywords="reviews", keywords="scenario-based interviews", keywords="interviews", abstract="Background: Low back pain (LBP) is a highly prevalent problem causing substantial personal and societal burden. Although there are specific types of LBP, each with evidence-based treatment recommendations, most patients receive a nonspecific diagnosis that does not facilitate evidence-based and individualized care. Objectives: We designed, developed, and initially tested the usability of a LBP diagnosis and treatment decision support tool based on the available evidence for use by clinicians who treat LBP, with an initial focus on chiropractic care. Methods: Our 3-step user-centered design approach consisted of identifying clinical requirements through the analysis of evidence reviews, iteratively identifying task-based user requirements and developing a working web-based prototype, and evaluating usability through scenario-based interviews and the System Usability Scale. Results: The 5 participating users had an average of 18.5 years of practicing chiropractic medicine. Clinical requirements included 44 patient interview and examination items. Of these, 13 interview items were enabled for all patients and 13 were enabled conditional on other input items. One examination item was enabled for all patients and 16 were enabled conditional on other items. One item was a synthesis of interview and examination items. These items provided evidence of 12 possible working diagnoses of which 3 were macrodiagnoses and 9 were microdiagnoses. Each diagnosis had relevant treatment recommendations and corresponding patient educational materials. User requirements focused on tasks related to inputting data, and reviewing and selecting working diagnoses, treatments, and patient education. User input led to key refinements in the design, such as organizing the input questions by microdiagnosis, adding a patient summary screen that persists during data input and when reviewing output, adding more information buttons and graphics to input questions, and providing traceability by highlighting the input items used by the clinical logic to suggest a working diagnosis. Users believed that it would be important to have the tool accessible from within an electronic health record for adoption within their workflows. The System Usability Scale score for the prototype was 84.75 (range: 67.5?95), considered as the top 10th percentile. Users believed that the tool was easy to use although it would require training and practice on the clinical content to use it effectively. With such training and practice, users believed that it would improve care and shed light on the ``black hole'' of LBP diagnosis and treatment. Conclusions: Our systematic process of defining clinical requirements and eliciting user requirements to inform a clinician-facing decision support tool produced a prototype application that was viewed positively and with enthusiasm by clinical users. With further planned development, this tool has the potential to guide clinical evaluation, inform more specific diagnosis, and encourage patient education and individualized treatment planning for patients with LBP through the application of evidence at the point of care. ", doi="10.2196/66666", url="https://formative.jmir.org/2025/1/e66666" } @Article{info:doi/10.2196/68743, author="Shikino, Kiyoshi and Yamauchi, Kazuyo and Araki, Nobuyuki and Shimizu, Ikuo and Kasai, Hajime and Tsukamoto, Tomoko and Tajima, Hiroshi and Li, Yu and Onodera, Misaki and Ito, Shoichi", title="Understanding Community Health Care Through Problem-Based Learning With Real-Patient Videos: Single-Arm Pre-Post Mixed Methods Study", journal="JMIR Med Educ", year="2025", month="Jan", day="31", volume="11", pages="e68743", keywords="community health care", keywords="community-oriented medical education", keywords="mixed method", keywords="problem-based learning", keywords="real-patient video", abstract="Background: Japan faces a health care delivery challenge due to physician maldistribution, with insufficient physicians practicing in rural areas. This issue impacts health care access in remote areas and affects patient outcomes. Educational interventions targeting students' career decision-making can potentially address this problem by promoting interest in rural medicine. We hypothesized that community-based problem-based learning (PBL) using real-patient videos could foster students' understanding of community health care and encourage positive attitudes toward rural health care. Objective: This study investigated the impact of community-based PBL on medical students' understanding and engagement with rural health care, focusing on their knowledge, skills, and career orientation. Methods: Participants were 113 fourth-year medical students from Chiba University, engaged in a transition course between preclinical and clinical clerkships from October 24 to November 2, 2023. The students were randomly divided into 16 groups (7-8 participants per group). Each group participated in two 3-hour PBL sessions per week over 2 consecutive weeks. Quantitative data were collected using pre- and postintervention questionnaires, comprehension tests, and tutor-assessed rubrics. Self-assessment questionnaires evaluated the students' interest in community health care and their ability to envision community health care settings before and after the intervention. Qualitative data from the students' semistructured interviews after the PBL sessions assessed the influence of PBL experience on clinical clerkship in community hospitals. Statistical analysis included median (IQR), effect sizes, and P values for quantitative outcomes. Thematic analysis was used for qualitative data. Results: Of the 113 participants, 71 (62.8\%) were male and 42 (37.2\%) female. The total comprehension test scores improved significantly (pretest: median 4.0, IQR 2.5-5.0; posttest: median 5, IQR 4-5; P<.001; effect size r=0.528). Rubric-based assessments showed increased knowledge application (pretest: median 8, IQR 7-9; posttest: median 8, IQR 8-8; P<.001; r=0.494) and self-directed learning (pretest: median 8, IQR 7-9; posttest: median 8, IQR 8-8; P<.001; r=0.553). Self-assessment questionnaires revealed significant improvements in the students' interest in community health care (median 3, IQR 3-4 to median 4, IQR 3-4; P<.001) and their ability to envision community health care settings (median 3, IQR 3-4 to median 4, IQR 3-4; P<.001). Thematic analysis revealed key themes, such as ``empathy in patient care,'' ``challenges in home health care,'' and ``professional identity formation.'' Conclusions: Community-based PBL with real-patient videos effectively enhances medical students' understanding of rural health care settings, clinician roles, and the social needs of rural patients. This approach holds potential as an educational strategy to address physician maldistribution. Although this study suggests potential for fostering positive attitudes toward rural health care, further research is needed to assess its long-term impact on students' career trajectories. ", doi="10.2196/68743", url="https://mededu.jmir.org/2025/1/e68743" } @Article{info:doi/10.2196/65967, author="Taneja, Shipra and Kalia, Kamini and Tang, Terence and Wodchis, P. Walter and Vanderhout, Shelley", title="Examining Health Care Provider Experiences With Patient Portal Implementation: Mixed Methods Study", journal="J Med Internet Res", year="2025", month="Jan", day="31", volume="27", pages="e65967", keywords="patient portal", keywords="mixed methods", keywords="implementation", keywords="healthcare provider", keywords="health system", keywords="patient care", keywords="online questionnaire", keywords="Canada", keywords="descriptive statistics", keywords="thematic analysis", abstract="Background: Health systems are increasingly offering patient portals as tools for patients to access their health information with the goal of improving engagement in care. However, understanding health care providers' perspectives on patient portal implementation is crucial. Objective: This study aimed to understand health care providers' experiences of implementing the MyChart patient portal, perspectives about its impact on patient care, clinical practice, and workload, and opportunities for improvement. Methods: Using an explanatory sequential mixed methods approach, we conducted a web-based questionnaire and semistructured individual interviews with health care providers at a large Canadian community hospital, 6 months after MyChart was first offered to patients. We explored perspectives about the impact of MyChart on clinical practice, workload, and patient care. Data were analyzed using descriptive statistics and thematic analysis. Results: In total, 261 health care providers completed the web-based questionnaire, and 15 also participated in interviews. Participants agreed that patients should have access to their health information through MyChart and identified its benefits such as patients gaining a greater understanding of their own health, which could improve patient safety (160/255, 62\%). While many health care providers agreed that MyChart supported better patient care (108/258, 42\%), there was limited understanding of features available to patients and expectations for integrating MyChart into clinical routines. Concerns were raised about the potential negative impacts of MyChart on patient-provider relationships because sensitive notes or results could be inappropriately interpreted (109/251, 43\%), and a potential increase in workload if additional portal features were introduced. Suggested opportunities for improvement included support for both patients and health care providers to learn about MyChart and establishing guidelines for health care providers on how to communicate information available in MyChart to patients. Conclusions: While health care providers acknowledged that MyChart improved patients' access to health information, its implementation introduced some friction and concerns. To reduce the risk of these challenges, health systems can benefit from engaging health care providers early to identify effective patient portal implementation strategies. ", doi="10.2196/65967", url="https://www.jmir.org/2025/1/e65967", url="http://www.ncbi.nlm.nih.gov/pubmed/39888658" } @Article{info:doi/10.2196/62670, author="Heaney-Huls, Krysta and Shams, Rida and Nwefo, Ruth and Kane, Rachel and Gordon, Janna and Laffan, M. Alison and Stare, Scott and Dullabh, Prashila", title="Electronic Health Record Data Collection Practices to Advance Standardization and Interoperability of Patient Preferences for Interpretation Services: Qualitative Study", journal="J Med Internet Res", year="2025", month="Jan", day="31", volume="27", pages="e62670", keywords="health information exchange", keywords="interoperability", keywords="electronic health records", keywords="interpreter", keywords="limited English proficiency", keywords="communication barriers", abstract="Background: Poor health outcomes are well documented among patients with a non-English language preference (NELP). The use of interpreters can improve the quality of care for patients with NELP. Despite a growing and unmet need for interpretation services in the US health care system, rates of interpreter use in the care setting are consistently low. Standardized collection and exchange of patient interpretation needs can improve access to appropriate language assistance services. Objective: This study aims to examine current practices for collecting, documenting, and exchanging information on a patient's self-reported preference for an interpreter in the electronic health record (EHR) and the implementation maturity and adoption level of available data standards. The paper identifies standards implementation; data collection workflows; use cases for collecting, documenting, and exchanging information on a patient's self-reported preference for an interpreter; challenges to data collection and use; and opportunities to advance standardization of the interpreter needed data element to facilitate patient-centered care. Methods: We conducted a narrative review to describe the availability of terminology standards to facilitate health care organization documentation of a patient's self-reported preference for an interpreter in the EHR. Key informant discussions with EHR developers, health systems, clinicians, a practice-based research organization, a national standards collaborative, a professional health care association, and Federal agency representatives filled in gaps from the narrative review. Results: The findings indicate that health care organizations value standardized collection and exchange of patient language assistance service needs and preferences. Informants identified three use cases for collecting, documenting, and exchanging information on a patient's self-reported preference for an interpreter, which are (1) person-centered care, (2) transitions of care, and (3) health care administration. The discussions revealed that EHR developers provide a data field for documenting interpreter needed data, which are routinely collected across health care organizations through commonly used data collection workflows. However, this data element is not mapped to standard terminologies, such as Logical Observation Identifiers Names and Codes (LOINC) or Systematized Medical Nomenclature for Medicine--Clinical Terminology (SNOMED-CT), consequently limiting the opportunities to electronically share these data between health systems and community-based organizations. The narrative review and key informant discussions identified three potential challenges to using information on a patient's self-reported preference for an interpreter for person-centered care and quality improvement, which are (1) lack of adoption of available data standards, (2) limited electronic exchange, and (3) patient mistrust. Conclusions: Collecting and documenting patient's self-reported interpreter preferences can improve the quality of services provided, patient care experiences, and equitable health care delivery without invoking a significant burden on the health care system. Although there is routine collection and documentation of patient interpretation needs, the lack of standardization limits the exchange of this information among health care and community-based organizations. ", doi="10.2196/62670", url="https://www.jmir.org/2025/1/e62670", url="http://www.ncbi.nlm.nih.gov/pubmed/39888652" } @Article{info:doi/10.2196/60138, author="Figueroa, A. Caroline and Torkamaan, Helma and Bhattacharjee, Ananya and Hauptmann, Hanna and Guan, W. Kathleen and Sedrakyan, Gayane", title="Designing Health Recommender Systems to Promote Health Equity: A Socioecological Perspective", journal="J Med Internet Res", year="2025", month="Jan", day="30", volume="27", pages="e60138", keywords="digital health", keywords="health promotion", keywords="health recommender systems", keywords="artificial intelligence", keywords="health equity", keywords="AI", keywords="digital devices", keywords="socioecological", keywords="health inequities", keywords="health behavior", keywords="health behaviors", keywords="patient centric", keywords="digital health intervention", doi="10.2196/60138", url="https://www.jmir.org/2025/1/e60138" } @Article{info:doi/10.2196/60825, author="Amhaz, Haneen and Chen, Xuanping Sally and Elchehimi, Amanee and Han, Jialin Kylin and Gil, Morales Jade and Yao, Lu and Vidler, Marianne and Berry-Einarson, Kathryn and Dewar, Kathryn and Tuason, May and Prestley, Nicole and Doan, Quynh and van Rooij, Tibor and Costa, Tina and Ogilvie, Gina and Payne, A. Beth", title="The Research Agenda for Perinatal Innovation and Digital Health Project: Human-Centered Approach to Multipartner Research Agenda Codevelopment", journal="JMIR Hum Factors", year="2025", month="Jan", day="30", volume="12", pages="e60825", keywords="digital health", keywords="co-design", keywords="digital strategy", keywords="human-centered design", keywords="eHealth", keywords="cocreation", keywords="codevelopment", keywords="perinatal intervention", keywords="quality of care", keywords="digital tools", keywords="pregnancy", keywords="patient autonomy", keywords="patient support", keywords="mobile phone", abstract="Background: Digital health innovations provide an opportunity to improve access to care, information, and quality of care during the perinatal period, a critical period of health for mothers and infants. However, research to develop perinatal digital health solutions needs to be informed by actual patient and health system needs in order to optimize implementation, adoption, and sustainability. Objective: Our aim was to co-design a research agenda with defined research priorities that reflected health system realities and patient needs. Methods: Co-design of the research agenda involved a series of activities: (1) review of the provincial Digital Health Strategy and Maternity Services Strategy to identify relevant health system priorities, (2) anonymous survey targeting perinatal care providers to ascertain their current use and perceived need for digital tools, (3) engagement meetings using human-centered design methods with multilingual patients who are currently or recently pregnant to understand their health experiences and needs, and (4) a workshop that brought together patients and other project partners to prioritize identified challenges and opportunities for perinatal digital health in a set of research questions. These questions were grouped into themes using a deductive analysis approach starting with current BC Digital Health Strategy guiding principles. Results: Between September 15, 2022, and August 31, 2023, we engaged with more than 150 perinatal health care providers, researchers, and health system stakeholders and a patient advisory group of women who were recently pregnant to understand the perceived needs and priorities for digital innovation in perinatal care in British Columbia, Canada. As a combined group, partners were able to define 12 priority research questions in 3 themes. The themes prioritized are digital innovation for (1) patient autonomy and support, (2) standardized educational resources for patients and providers, and (3) improved access to health information. Conclusions: Our research agenda highlights the needs for perinatal digital health research to support improvements in the quality of care in British Columbia. By using a human-centered design approach, we were able to co-design research priorities that are meaningful to patients and health system stakeholders. The identified priority research questions are merely a stepping stone in the research process and now need to be actioned by research teams and health systems partners. ", doi="10.2196/60825", url="https://humanfactors.jmir.org/2025/1/e60825" } @Article{info:doi/10.2196/63597, author="Thiessen, Maclean and Jewitt, Kellie and Stromberg, Raina and Lamontagne, Marie Janelle and Richardson Tanguay, Genevieve and Albo, Annette and Thurston, Chantale and McMillan, E. Diana", title="Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study", journal="JMIR Res Protoc", year="2025", month="Jan", day="29", volume="14", pages="e63597", keywords="patient engagement", keywords="patient empowerment", keywords="translational research", keywords="patient recruitment", keywords="development and research", keywords="protocol", keywords="Manitoba", keywords="Canada", keywords="cancer", keywords="patient advisor", keywords="website", keywords="research platform", keywords="thematic analysis", keywords="semi-structured interview", keywords="online infrastructure", abstract="Background: TheKeep.Ca was built to facilitate engagement with those experiencing cancer in Manitoba, Canada. Constructed between 2020 and 2024 with a group of patient advisors, the website includes information on engagement activities including research participation, the patient advisor role, and how those experiencing cancer can access these Manitoba activities. A link allows visitors to register to be contacted about activities that match their demographics, cancer history, and activity preferences. After TheKeep.Ca was constructed, this protocol was developed to establish TheKeep.Ca as a platform for scientific research focused on optimally engaging those experiencing cancer. Objective: We asked the following questions: (1) What was the patient advisors' experience who participated in developing TheKeep.Ca? (2) What are the baseline characteristics of website traffic and registrants at TheKeep.Ca? (3) How does registering with TheKeep.Ca impact the cancer experience? Methods: The planned launch date for the website and initiation of research activities is January 2025. For objective 1, the active patient advisors (N=6) participating in the website project will be invited to participate in project activities including with responses to a question prompt sheet, semistructured audio-recorded interviews, or both. Responses and interviews will be analyzed using reflexive thematic analysis to understand and inform practices for patient engagement on projects. At the website launch, TheKeep.Ca will become publicly accessible and indexable on internet search engines, but no additional promotional interventions will take place in the initial 6 months resulting in visitors primarily from web search traffic. For objective 2, Google Analytics and website registrant data collected during the first six months will be analyzed to obtain baseline characteristics of website visitors. For objective 3, an online survey will be emailed to registrants six months after the website launch characterizing their website experience, the activities they participated in, and collecting feedback on the website. For objectives 2 and 3, quantitative data will be analyzed using both descriptive and inferential statistics, and qualitative data from open-ended questions will be analyzed using thematic analysis guided by an inductive descriptive semantic approach. Results: This study was approved by the University of Manitoba Health Research Ethics Board on December 12, 2024 (HS26614-H2024L263). Institutional approval from CancerCare Manitoba is pending as of December 23, 2024. Findings from objective 1 are expected to be finalized within the first six months after the website launch. Those from objectives 2 and 3 are expected by the 12-month mark. Reporting will include peer-reviewed journals, conferences, and a lay-language summary on TheKeep.Ca. Conclusions: The research outlined in this protocol will facilitate understanding patient advisors' experience in developing TheKeep.Ca. It will also characterize the website' effectiveness and its impact on the cancer experience, providing a baseline and direction for future research and development. International Registered Report Identifier (IRRID): PRR1-10.2196/63597 ", doi="10.2196/63597", url="https://www.researchprotocols.org/2025/1/e63597" } @Article{info:doi/10.2196/58628, author="Koh, Jodie and Caron, Stacey and Watters, N. Amber and Vaidyanathan, Mahesh and Melnick, David and Santi, Alyssa and Hudson, Kenneth and Arguelles, Catherine and Mathur, Priyanka and Etemadi, Mozziyar", title="Technological Adjuncts to Streamline Patient Recruitment, Informed Consent, and Data Management Processes in Clinical Research: Observational Study", journal="JMIR Form Res", year="2025", month="Jan", day="29", volume="9", pages="e58628", keywords="digital health", keywords="patient recruitment", keywords="consent", keywords="technological adjuncts", keywords="data management", keywords="clinical research processes", keywords="automation", keywords="digital platforms", keywords="data warehouse", keywords="patient data", keywords="imaging data", keywords="pregnancy", keywords="clinical research methods", abstract="Background: Patient recruitment and data management are laborious, resource-intensive aspects of clinical research that often dictate whether the successful completion of studies is possible. Technological advances present opportunities for streamlining these processes, thus improving completion rates for clinical research studies. Objective: This paper aims to demonstrate how technological adjuncts can enhance clinical research processes via automation and digital integration. Methods: Using one clinical research study as an example, we highlighted the use of technological adjuncts to automate and streamline research processes across various digital platforms, including a centralized database of electronic medical records (enterprise data warehouse [EDW]); a clinical research data management tool (REDCap [Research Electronic Data Capture]); and a locally managed, Health Insurance Portability and Accountability Act--compliant server. Eligible participants were identified through automated queries in the EDW, after which they received personalized email invitations with digital consent forms. After digital consent, patient data were transferred to a single Health Insurance Portability and Accountability Act--compliant server where each participant was assigned a unique QR code to facilitate data collection and integration. After the research study visit, data obtained were associated with existing electronic medical record data for each participant via a QR code system that collated participant consent, imaging data, and associated clinical data according to a unique examination ID. Results: Over a 19-month period, automated EDW queries identified 20,988 eligible patients, and 10,582 patients received personalized email invitations. In total, 1000 (9.45\%) patients signed consents to participate in the study. Of the consented patients, 549 unique patients completed 779 study visits; some patients consented to the study at more than 1 time period during their pregnancy. Conclusions: Technological adjuncts in clinical research decrease human labor while increasing participant reach and minimizing disruptions to clinic operations. Automating portions of the clinical research process benefits clinical research efforts by expanding and optimizing participant reach while reducing the limitations of labor and time in completing research studies. ", doi="10.2196/58628", url="https://formative.jmir.org/2025/1/e58628", url="http://www.ncbi.nlm.nih.gov/pubmed/39879093" } @Article{info:doi/10.2196/63373, author="Soltani, Nazli and Dietz, Thilo and Ochterbeck, Doris and Dierkes, Jens and Restel, Katja and Christianson, Lara and De Santis, Karolina Karina and Zeeb, Hajo", title="Digital Information Exchange Between the Public and Researchers in Health Studies: Scoping Review", journal="J Med Internet Res", year="2025", month="Jan", day="28", volume="27", pages="e63373", keywords="health information", keywords="information exchange", keywords="communication", keywords="knowledge translation", keywords="dissemination", keywords="digital technology", keywords="research participant", keywords="scoping review", abstract="Background: Information exchange regarding the scope and content of health studies is becoming increasingly important. Digital methods, including study websites, can facilitate such an exchange. Objective: This scoping review aimed to describe how digital information exchange occurs between the public and researchers in health studies. Methods: This scoping review was prospectively registered and adheres to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines. Eligibility was defined using the population (public and researchers), concept (digital information exchange), and context (health studies) framework. Bibliographic databases (MEDLINE, PsycINFO, CINAHL, and Web of Science), bibliographies of the included studies, and Google Scholar were searched up to February 2024. Studies published in peer-reviewed journals were screened for inclusion based on the title, abstract, and full text. Data items charted from studies included bibliographic and PCC (Population, Concept, and Context) characteristics. Data were processed into categories that inductively emerged from the data and were synthesized into main themes using descriptive statistics. Results: Overall, 4072 records were screened, and 18 studies published between 2010 and 2021 were included. All studies evaluated or assessed the preferences for digital information exchange. The target populations included the public (mainly adults with any or specific diseases), researchers, or both. The digital information exchange methods included websites, emails, forums, platforms, social media, and portals. Interactivity (ie, if digital information exchange is or should be active or passive) was addressed in half of the studies. Exchange content included health information or data with the aim to inform, recruit, link, or gather innovative research ideas from participants in health studies. We identified 7 facilitators and 9 barriers to digital information exchange. The main facilitators were the consideration of any stakeholder perspectives and needs to clarify expectations and responsibilities, the use of modern or low-cost communication technologies and public-oriented language, and continuous communication of the health study process. The main barriers were that information exchange was not planned or not feasible due to inadequate resources, highly complex technical language was used, and ethical concerns (eg, breach of anonymity if study participants are brought together) were raised. Evidence gaps indicate that new studies should assess the methods and the receiver (ie, public) preferences and needs that are required to deliver and facilitate interactive digital information exchange. Conclusions: Few studies addressing digital information exchange in health studies could be identified in this review. There was little focus on interactivity in such an exchange. Digital information exchange was associated with more barriers than facilitators, suggesting that more effort is required to improve such an exchange between the public and researchers. Future studies should investigate interactive digital methods and the receiver preferences and needs required for such an exchange. ", doi="10.2196/63373", url="https://www.jmir.org/2025/1/e63373" } @Article{info:doi/10.2196/63818, author="Barbazi, Neda and Shin, Youn Ji and Hiremath, Gurumurthy and Lauff, Anne Carlye", title="Developing Assessments for Key Stakeholders in Pediatric Congenital Heart Disease: Qualitative Pilot Study to Inform Designing of a Medical Education Toy", journal="JMIR Form Res", year="2025", month="Jan", day="27", volume="9", pages="e63818", keywords="assessment", keywords="congenital heart disease", keywords="children health literacy", keywords="health education", keywords="caregiving", keywords="patient-centered care", keywords="design", keywords="qualitative pilot", keywords="children health", keywords="educational interventions", abstract="Background: Congenital heart disease (CHD) is a birth defect of the heart that requires long-term care and often leads to additional health complications. Effective educational strategies are essential for improving health literacy and care outcomes. Despite affecting around 40,000 children annually in the United States, there is a gap in understanding children's health literacy, parental educational burdens, and the efficiency of health care providers in delivering education. Objective: This qualitative pilot study aims to develop tailored assessment tools to evaluate educational needs and burdens among children with CHD, their parents, and health care providers. These assessments will inform the design of medical education toys to enhance health management and outcomes for pediatric patients with CHD and key stakeholders. Methods: Through stakeholder feedback from pediatric patients with CHD, parents, and health care providers, we developed three tailored assessments in two phases: (1) iterative development of the assessment tools and (2) pilot testing. In the first phase, we defined key concepts, conducted a literature review, and created initial drafts of the assessments. During the pilot-testing phase, 12 participants were recruited at the M Health Fairview Pediatric Specialty Clinic for Cardiology---Explorer in Minneapolis, Minnesota, United States. We gathered feedback using qualitative methods, including cognitive interviews such as think-aloud techniques, verbal probing, and observations of nonverbal cues. The data were analyzed to identify the strengths and weaknesses of each assessment item and areas for improvement. Results: The 12 participants included children with CHD (n=5), parents (n=4), and health care providers (n=3). The results showed the feasibility and effectiveness of the tailored assessments. Participants showed high levels of engagement and found the assessment items relevant to their education needs. Iterative revisions based on participant feedback improved the assessments' clarity, relevance, and engagement for all stakeholders, including children with CHD. Conclusions: This pilot study emphasizes the importance of iterative assessment development, focusing on multistakeholder engagement. The insights gained from the development process will guide the creation of tailored assessments and inform the development of child-led educational interventions for pediatric populations with CHD. ", doi="10.2196/63818", url="https://formative.jmir.org/2025/1/e63818" } @Article{info:doi/10.2196/63270, author="Hagstr{\"o}m, Josefin and Blease, Charlotte and Harila, Arja and L{\"a}hteenm{\"a}ki, P{\"a}ivi and Scandurra, Isabella and H{\"a}gglund, Maria", title="Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study", journal="JMIR Pediatr Parent", year="2025", month="Jan", day="27", volume="8", pages="e63270", keywords="health care professionals", keywords="adolescent health", keywords="patient-accessible electronic health record", keywords="electronic health record", keywords="patient portal", keywords="survey", keywords="eHealth", keywords="interviews", abstract="Background: With the increasing implementation of patient online record access (ORA), various approaches to access to minors' electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child's care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied. Objective: This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden. Methods: We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis. Results: The survey population included 88 individuals (adolescents: n=31, 35\%; parents: n=57, 65\%). Interviews were completed by 8 (26\%) of the 31 adolescents and 17 (30\%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51\%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91\%) were critical of the access gap, and most of the adolescents (20/31, 65\%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents' and parents' views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change). Conclusions: In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations. ", doi="10.2196/63270", url="https://pediatrics.jmir.org/2025/1/e63270" } @Article{info:doi/10.2196/60512, author="Song, Mingming and Elson, Joel and Bastola, Dhundy", title="Digital Age Transformation in Patient-Physician Communication: 25-Year Narrative Review (1999-2023)", journal="J Med Internet Res", year="2025", month="Jan", day="16", volume="27", pages="e60512", keywords="health communication", keywords="health IT", keywords="patient empowerment", keywords="shared decision-making", keywords="patient-physician relationship", keywords="trust", abstract="Background: The evolution of patient-physician communication has changed since the emergence of the World Wide Web. Health information technology (health IT) has become an influential tool, providing patients with access to a breadth of health information electronically. While such information has greatly facilitated communication between patients and physicians, it has also led to information overload and the potential for spreading misinformation. This could potentially result in suboptimal health care outcomes for patients. In the digital age, effectively integrating health IT with patient empowerment, strong patient-physician relationships, and shared decision-making could be increasingly important for health communication and reduce these risks. Objective: This review aims to identify key factors in health communication and demonstrate how essential elements in the communication model, such as health IT, patient empowerment, and shared decision-making, can be utilized to optimize patient-physician communication and, ultimately, improve patient outcomes in the digital age. Methods: Databases including PubMed, Web of Science, Scopus, PsycINFO, and IEEE Xplore were searched using keywords related to patient empowerment, health IT, shared decision-making, patient-physician relationship, and health communication for studies published between 1999 and 2023. The data were constrained by a modified query using a multidatabase search strategy. The screening process was supported by the web-based software tool Rayyan. The review methodology involved carefully designed steps to provide a comprehensive summary of existing research. Topic modeling, trend analysis, and synthesis were applied to analyze and evaluate topics, trends, and gaps in health communication. Results: From a total of 389 selected studies, topic modeling analysis identified 3 primary topics: (1) Patient-Physician Relationship and Shared Decision-Making, (2) Patient Empowerment and Education Strategies, and (3) Health Care Systems and Health IT Implementations. Trend analysis further indicated their frequency and prominence in health communication from 1999 to 2023. Detailed examinations were conducted using secondary terms, including trust, health IT, patient-physician relationship, and patient empowerment, derived from the main topics. These terms clarified the collective impact on improving health communication dynamics. The synthesis of the role of health IT in health communication models underscores its critical role in shaping patient-centered health care frameworks. Conclusions: This review highlights the significant contributions of key topics that should be thoroughly investigated and integrated into health communication models in the digital age. While health IT plays an essential role in promoting shared decision-making and patient empowerment, challenges such as usability, privacy concerns, and digital literacy remain significant barriers. Future research should prioritize evaluating these key themes and addressing the challenges associated with health IT in health communication models. Additionally, exploring how emerging technologies, such as artificial intelligence, can support these goals may provide valuable insights for enhancing health communication. ", doi="10.2196/60512", url="https://www.jmir.org/2025/1/e60512" } @Article{info:doi/10.2196/59625, author="Huijgens, Fiorella and Kwakman, Pascale and Hillen, Marij and van Weert, Julia and Jaspers, Monique and Smets, Ellen and Linn, Annemiek", title="How Patients With Cancer Use the Internet to Search for Health Information: Scenario-Based Think-Aloud Study", journal="JMIR Infodemiology", year="2025", month="Jan", day="16", volume="5", pages="e59625", keywords="web-based health information seeking", keywords="think aloud", keywords="scenario based", keywords="cancer", keywords="patient evaluation", keywords="information seeking", keywords="web-based information", keywords="health information", keywords="internet", keywords="pattern", keywords="motivation", keywords="cognitive", keywords="emotional", keywords="response", keywords="patient", keywords="survivor", keywords="caregiver", keywords="interview", keywords="scenario", keywords="women", keywords="men", abstract="Background: Patients with cancer increasingly use the internet to seek health information. However, thus far, research treats web-based health information seeking (WHIS) behavior in a rather dichotomous manner (ie, approaching or avoiding) and fails to capture the dynamic nature and evolving motivations that patients experience when engaging in WHIS throughout their disease trajectory. Insights can be used to support effective patient-provider communication about WHIS and can lead to better designed web-based health platforms. Objective: This study explored patterns of motivations and emotions behind the web-based information seeking of patients with cancer at various stages of their disease trajectory, as well as the cognitive and emotional responses evoked by WHIS via a scenario-based, think-aloud approach. Methods: In total, 15 analog patients were recruited, representing patients with cancer, survivors, and informal caregivers. Imagining themselves in 3 scenarios---prediagnosis phase (5/15, 33\%), treatment phase (5/15, 33\%), and survivor phase (5/15, 33\%)---patients were asked to search for web-based health information while being prompted to verbalize their thoughts. In total, 2 researchers independently coded the sessions, categorizing the codes into broader themes to comprehend analog patients' experiences during WHIS. Results: Overarching motives for WHIS included reducing uncertainty, seeking reassurance, and gaining empowerment. At the beginning of the disease trajectory, patients mainly showed cognitive needs, whereas this shifted more toward affective needs in the subsequent disease stages. Analog patients' WHIS approaches varied from exploratory to focused or a combination of both. They adapted their search strategy when faced with challenging cognitive or emotional content. WHIS triggered diverse emotions, fluctuating throughout the search. Complex, confrontational, and unexpected information mainly induced negative emotions. Conclusions: This study provides valuable insights into the motivations of patients with cancer underlying WHIS and the emotions experienced at various stages of the disease trajectory. Understanding patients' search patterns is pivotal in optimizing web-based health platforms to cater to specific needs. In addition, these findings can guide clinicians in accommodating patients' specific needs and directing patients toward reliable sources of web-based health information. ", doi="10.2196/59625", url="https://infodemiology.jmir.org/2025/1/e59625" } @Article{info:doi/10.2196/55043, author="Hemler, R. Jennifer and Wagner, B. Rachel and Sullivan, Brittany and Macenat, Myneka and Tagai, K. Erin and Vega, L. Jazmarie and Hernandez, Enrique and Miller, M. Suzanne and Wen, Kuang-Yi and Ayers, A. Charletta and Einstein, H. Mark and Hudson, V. Shawna and Kohler, E. Racquel", title="A Proposed mHealth Intervention to Address Patient Barriers to Colposcopy Attendance: Qualitative Interview Study of Clinic Staff and Patient Perspectives", journal="JMIR Form Res", year="2025", month="Jan", day="14", volume="9", pages="e55043", keywords="cervical cancer screening", keywords="colposcopy", keywords="HPV", keywords="human papillomavirus", keywords="mHealth", keywords="health communication", keywords="qualitative research", keywords="cancer screening", keywords="cancer", keywords="cervical cancer", keywords="screening", keywords="women", keywords="clinic staff", keywords="barrier", keywords="messaging", keywords="privacy", keywords="text message", keywords="qualitative", keywords="colposcopic", keywords="mhealth intervention", keywords="mobile phone", abstract="Background: Cervical cancer disparities persist among minoritized women due to infrequent screening and poor follow-up. Structural and psychosocial barriers to following up with colposcopy are problematic for minoritized women. Evidence-based interventions using patient navigation and tailored telephone counseling, including the Tailored Communication for Cervical Cancer Risk (TC3), have modestly improved colposcopy attendance. However, the efficacious TC3 intervention is human resource-intense and could have greater reach if adapted for mobile health, which increases convenience and access to health information. Objective: This study aimed to describe feedback from clinic staff members involved in colposcopy processes and patients referred for colposcopy regarding adaptions to the TC3 phone-based intervention to text messaging, which addresses barriers among those referred for colposcopy after abnormal screening results. Methods: Semistructured depth qualitative interviews were conducted over Zoom [Zoom Communications, Inc] or telephone with a purposive sample of 22 clinic staff members (including clinicians and support staff members) and 34 patients referred for colposcopy from 3 academic obstetrics and gynecology (OB-GYN) clinics that serve predominantly low-income, minoritized patients in different urban locations in New Jersey and Pennsylvania. Participants were asked about colposcopy attendance barriers and perspectives on a proposed text message intervention to provide tailored education and support in the time between abnormal cervical screening and colposcopy. The analytic team discussed interviews, wrote summaries, and consensus-coded transcripts, analyzing output for emergent findings and crystallizing themes. Results: Clinic staff members and patients had mixed feelings about a text-only intervention. They overwhelmingly perceived a need to provide patients with appointment reminders and information about abnormal cervical screening results and colposcopy purpose and procedure. Both groups also thought messages emphasizing that human papillomavirus is common and cervical cancer can be prevented with follow-up could enhance attendance. However, some had concerns about the privacy of text messages and text fatigue. Both groups thought that talking to clinic staff members was needed in certain instances; they proposed connecting patients experiencing complex psychosocial or structural barriers to staff members for additional information, psychological support, and help with scheduling around work and finding childcare and transportation solutions. They also identified inadequate scheduling and reminder systems as barriers. From this feedback, we revised our text message content and intervention design, adding a health coaching component to support patients with complex barriers and concerns. Conclusions: Clinic staff members and patient perspectives are critical for designing appropriate and relevant interventions. These groups conveyed that text message-only interventions may be useful for patients with lesser barriers who may benefit from reminders, basic educational information, and scheduling support. However, multimodal interventions may be necessary for patients with complex barriers to colposcopy attendance, which we intend to evaluate in a subsequent trial. ", doi="10.2196/55043", url="https://formative.jmir.org/2025/1/e55043", url="http://www.ncbi.nlm.nih.gov/pubmed/39808485" } @Article{info:doi/10.2196/65099, author="Terceiro, Luciana and Mustafa, Imran Mudassir and H{\"a}gglund, Maria and Kharko, Anna", title="Research Participants' Engagement and Retention in Digital Health Interventions Research: Protocol for Mixed Methods Systematic Review", journal="JMIR Res Protoc", year="2025", month="Jan", day="3", volume="14", pages="e65099", keywords="clinical research informatics", keywords="participant engagement", keywords="participant retention", keywords="clinical research", keywords="mobile application", keywords="digital platforms", keywords="mobile phone", abstract="Background: Digital health interventions have become increasingly popular in recent years, expanding the possibilities for treatment for various patient groups. In clinical research, while the design of the intervention receives close attention, challenges with research participant engagement and retention persist. This may be partially due to the use of digital health platforms, which may lack adequacy for participants. Objective: This systematic literature review aims to investigate the relationship between digital health platforms and participant engagement and retention in clinical research. It will map and analyze key definitions of engagement and retention, as well as identify design characteristics that influence them. Methods: We will carry out a mixed methods systematic literature review, analyzing qualitative and quantitative studies. The search strategy includes the electronic databases PubMed, IEEE Xplore, CINAHL, Scopus, Web of Science, APA PsycINFO, and the ACM Digital Library. The review will encompass studies published between January 2018 and June 2024. Criteria for inclusion will be the presence of digital health care interventions conducted through digital health platforms like websites, web and mobile apps used by patients, and informal caregivers as research participants. The main outcome will be a narrative analysis with key findings on the definitions of participant engagement and retention and critical factors that affect them. Quality assessment and appraisal will be done through the Mixed-Methods Assessment Tool. Data analysis and synthesis will follow the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 flow diagram. Quantitative data will be qualified and integrated into qualitative data, which will be analyzed using thematic analysis and synthesis. Results: The study expects to map and summarize critical definitions of participant engagement and retention, and the characteristics of digital health platforms that influence them. The systematic review is expected to be completed in June 2025. Conclusions: This systematic review will contribute to the growing discussion on how the design of digital health intervention platforms can promote participant engagement and retention in clinical research. Trial Registration: PROSPERO CRD42024561650; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=561650 International Registered Report Identifier (IRRID): PRR1-10.2196/65099 ", doi="10.2196/65099", url="https://www.researchprotocols.org/2025/1/e65099" } @Article{info:doi/10.2196/55746, author="Kamminga, Willemina Nadia Christina and Lugtenberg, Marjolein and Van den Broek, Annabel Julia and Nijsten, Tamar and Wakkee, Marlies and Tabeau, Kasia", title="Exploring Motives Behind Ideal Melanoma Survivorship Care Plans With Multiple Stakeholders: A Cocreation Study", journal="JMIR Cancer", year="2025", month="Jan", day="2", volume="11", pages="e55746", keywords="cocreation", keywords="survivorship care", keywords="psycho-oncology", keywords="supportive care", keywords="motives", keywords="melanoma", keywords="cancer survivor", keywords="melanoma care", abstract="Background: Survivorship care plans (SCPs), ie, personalized health care plans for cancer survivors, can be used to support the growing group of melanoma survivors throughout their disease trajectory. However, implementation and effectiveness of SCPs are suboptimal and could benefit from the involvement of stakeholders in developing a user-centered design. Objective: The aim of this study was to identify the ideal SCP for patients with melanoma in terms of functions and features to be included according to different stakeholders and to explore their underlying motives. Methods: In total, 3 cocreation sessions were organized with mixed samples of stakeholders, ie, patients with (a history of) melanoma (n=4), health care providers (HCPs) active in melanoma care (n=3), and IT specialists active in hospital IT departments (n=6). They were invited to compose their ideal melanoma SCP based on potential functions and features identified from prior qualitative research. These functions and features belonged to one of the four main categories of survivorship care (SSC): (1) information and education, (2) identification and treatment, (3) oncological follow-up, and (4) coordination. Participants were invited to explain their motives for including functions and features. Ideas were shared between stakeholders, and interaction was promoted. Descriptive statistics were used to determine the ideal SCP per stakeholder group. To analyze underlying motives, all cocreation sessions were audio-taped, transcribed verbatim, and analyzed in a thematic content analysis. Results: With regard to their ideal SCPs, all stakeholders added functions from all 4 SSC categories. Patients assembled a rather compact SCP with category 2 on identification and treatment being most important. Both HCPs and IT professionals constructed a somewhat larger SCP, with category 3 on oncological follow-up being the most important aspect and HCPs also focusing on category 4 on coordination. As for the motives behind their ideal SCP compositions, patients predominantly added functions based on their personal experiences or experiences from fellow patients, whereas both HCPS and IT professionals based their compositions primarily on their respective areas of expertise: HCPs related their additions to their roles as medical practitioners; for example, in providing a complete treatment plan and obtaining informed consent, while IT professionals' contributions were mainly influenced by feasibility and privacy concerns. Conclusions: This cocreation study provides insights into stakeholders' ideal melanoma SCP and the motivations behind them. Considering the diversity in both the preferences and underlying motives regarding SCP composition between patients, HCPs, and IT specialists, it is crucial to develop a broad SCP that extends beyond traditional SCP content, emphasizing personalization. In addition to continued stakeholder involvement, efforts should be focused on addressing potential feasibility and privacy issues to ensure the SCP meets both patients' and HCPs' needs. ", doi="10.2196/55746", url="https://cancer.jmir.org/2025/1/e55746" } @Article{info:doi/10.2196/55450, author="Auyeung, Larry and Mak, S. Winnie W. and Tsang, Zoe Ella", title="Service Attributes and Acceptability of Digital and Nondigital Depression Management Methods Among Individuals With Depressive Symptoms: Survey Study", journal="JMIR Form Res", year="2024", month="Dec", day="19", volume="8", pages="e55450", keywords="eHealth", keywords="acceptability", keywords="user preference", keywords="diffusion of innovation", keywords="mental health services", abstract="Background: Academic research on digital mental health tends to focus on its efficacy and effectiveness, with much less attention paid to user preferences and experiences in real-world settings. Objective: This study aims to analyze service characteristics that service users value and compare the extent to which various digital and nondigital mental health treatments and management methods fulfill users' expectations. Methods: A total of 114 people with at least moderate levels of depressive symptoms (as measured by Patient Health Questionnaire--9 score ?10) completed a web-based questionnaire measuring their awareness and adoption of digital mental health services and their valuation of 15 psychological service attributes, including effectiveness, credibility, waiting time, and more. They were also assessed on their expectations toward seven common mental health treatments and management methods, including (1) face-to-face psychological intervention, (2) medication, (3) guided internet-based psychological intervention, (4) face-to-face counseling service, (5) self-guided mental health apps for depression, (6) self-help bibliotherapy, and (7) psychological intervention via videoconferencing. Results: A Friedman test with a Dunn posttest showed the average importance rank of ``effectiveness'' was significantly higher than all other measured attributes. ``Privacy,'' ``credibility,'' and ``cost'' were ranked as equally important. Participants rated face-to-face psychological intervention the most effective management method, while other digital management methods were perceived as less effective. Medication was perceived as the least appealing method, while other methods were deemed equally appealing. Face-to-face psychological intervention, medication, and counseling were considered less satisfactory due to their higher costs and longer waiting times when compared to digital services. Repeated measures ANOVA showed some forms of management method were more likely to be adopted, including guided internet-based psychological intervention, psychological intervention via videoconferencing, face-to-face psychological intervention, and face-to-face counseling services provided by a counselor as compared to self-guided mobile apps, self-help bibliotherapy, and medication. Conclusions: The study highlights the importance of considering multiple service attributes beyond effectiveness in depression management methods, despite effectiveness being regarded as the most crucial factor using the rank method. Compared to nondigital services, digital services were identified as having specific strengths as perceived by users. Future dissemination and promotion efforts may focus on debunking myths of guided internet-based psychological intervention as a less effective option and promoting the particular service strengths of digital services. ", doi="10.2196/55450", url="https://formative.jmir.org/2024/1/e55450", url="http://www.ncbi.nlm.nih.gov/pubmed/39699956" } @Article{info:doi/10.2196/60117, author="Malhotra, Chetna and Yee, Alethea and Ramakrishnan, Chandrika and Kaurani, Naraindas Sanam and Chua, Ivy and Lakin, R. Joshua and Sim, David and Balakrishnan, Iswaree and Ling, Jin Vera Goh and Weiliang, Huang and Ling, Fong Lee and Pollak, I. Kathryn", title="Development and Usability of an Advance Care Planning Website (My Voice) to Empower Patients With Heart Failure and Their Caregivers: Mixed Methods Study", journal="JMIR Aging", year="2024", month="Dec", day="18", volume="7", pages="e60117", keywords="advance care planning", keywords="decision aid", keywords="heart", keywords="website", keywords="heart failure", keywords="care plan", keywords="caregiver", keywords="usability", keywords="acceptability", abstract="Background: Web-based advance care planning (ACP) interventions offer a promising solution to improve ACP engagement, but none are specifically designed to meet the needs of patients with heart failure and their caregivers. Objective: We aimed to develop and assess the usability and acceptability of a web-based ACP decision aid called ``My Voice,'' which is tailored for patients with heart failure and their caregivers. Methods: This study's team and advisory board codeveloped the content for both patient and caregiver modules in ``My Voice.'' Using a mixed methods approach, we iteratively tested usability and acceptability, incorporating feedback from patients, caregivers, and health care professionals (HCPs). Results: We interviewed 30 participants (11 patients, 9 caregivers, and 10 HCPs). Participants found the website easy to navigate, with simple and clear content facilitating communication of patients' values and goals. They also appreciated that it allowed them to revisit their care goals periodically. The average System Usability Scale score was 74 (SD 14.8; range: 42.5-95), indicating good usability. Over 80\% (8/11) of patients and 87\% (7/8) of caregivers rated the website's acceptability as good or excellent. Additionally, 70\% (7/10) of HCPs strongly agreed or agreed with 11 of the 15 items testing the website's acceptability. Conclusions: ``My Voice'' shows promise as a tool for patients with heart failure to initiate and revisit ACP conversations with HCPs and caregivers. We will evaluate its efficacy in improving patient and caregiver outcomes in a randomized controlled trial. Trial Registration: ClinicalTrials.gov NCT06090734; https://clinicaltrials.gov/study/NCT06090734 ", doi="10.2196/60117", url="https://aging.jmir.org/2024/1/e60117" } @Article{info:doi/10.2196/63155, author="Hermansen, Anna and Pollard, Samantha and McGrail, Kimberlyn and Bansback, Nick and Regier, A. Dean", title="Heuristics Identified in Health Data--Sharing Preferences of Patients With Cancer: Qualitative Focus Group Study", journal="J Med Internet Res", year="2024", month="Dec", day="17", volume="26", pages="e63155", keywords="heuristics", keywords="health data sharing", keywords="cancer patients", keywords="decision-making", keywords="real-world data", keywords="altruism", keywords="trust", keywords="control", keywords="data sharing", keywords="focus group", keywords="precision medicine", keywords="clinical data", keywords="exploratory study", keywords="qualitative", keywords="Canada", keywords="thematic analysis", keywords="informed consent", keywords="patient education", keywords="information technology", keywords="healthcare", keywords="medical informatics", abstract="Background: Evaluating precision oncology outcomes requires access to real-world and clinical trial data. Access is based on consent, and consent is based on patients' informed preferences when deciding to share their data. Decision-making is often modeled using utility theory, but a complex decision context calls for a consideration of how heuristic, intuitive thought processes interact with rational utility maximization. Data-sharing decision-making has been studied using heuristic theory, but almost no heuristic research exists in the health data context. This study explores this evidence gap, applying a qualitative approach to probe for evidence of heuristic mechanisms behind the health data-sharing preferences of those who have experienced cancer. Exploring qualitative decision-making reveals the types of heuristics used and how they are related to the process of decision-making to better understand whether consent mechanisms should consider nonrational processes to better serve patient decision-making. Objective: This study aimed to explore how patients with cancer use heuristics when deciding whether to share their data for research. Methods: The researchers conducted a focus group study of Canadians who have experienced cancer. We recruited participants through an online advertisement, screening individuals based on their ability to increase demographic diversity in the sample. We reviewed the literature on data-sharing platforms to develop a semistructured topic guide on concerns about data sharing, incentives to share, and consent and control. Focus group facilitators led the open-ended discussions about data-sharing preferences that revealed underlying heuristics. Two qualitative analysts coded transcripts using a heuristic framework developed from a review of the literature. Transcripts were analyzed for heuristic instances which were grouped according to sociocultural categories. Using thematic analysis, the analysts generated reflexive themes through norming sessions and consultations. Results: A total of 3 focus groups were held with 19 participants in total. The analysis identified 12 heuristics underlying intentions to share data. From the thematic analysis, we identified how the heuristics of social norms and community building were expressed through altruism; the recognition, reputation, and authority heuristics led to (dis)trust in certain institutions; the need for security prompted the illusion of control and transparency heuristics; and the availability and affect heuristics influenced attitudes around risk and benefit. These thematic relationships all had impacts on the participants' intentions to share their health data. Conclusions: The findings provide a novel qualitative understanding of how health data--sharing decisions and preferences may be based on heuristic processing. As patients consider the extent of risks and benefits, heuristic processes influence their assessment of anticipated outcomes, which may not result in rational, truly informed consent. This study shows how considering heuristic processing when designing current consent mechanisms opens up the opportunity for more meaningful and realistic interactions with the complex decision-making context. ", doi="10.2196/63155", url="https://www.jmir.org/2024/1/e63155" } @Article{info:doi/10.2196/56917, author="van Leersum, Margaretha Catharina and Bults, Marloes and Siebrand, Egbert and Olthuis, Josef Theodorus Johannes and Bekhuis, Marije Robin Enya and Konijnendijk, Johanneke Annemieke Ari{\"e}nne and den Ouden, Maria Marjolein Elisabeth", title="Exploring Opportunities and Challenges for the Spread, Scale-Up, and Sustainability of mHealth Apps for Self-Management of Patients With Type 2 Diabetes Mellitus in the Netherlands: Citizen Science Approach", journal="JMIR Diabetes", year="2024", month="Dec", day="17", volume="9", pages="e56917", keywords="mHealth", keywords="type 2 diabetes mellitus", keywords="implementation", keywords="self-management", keywords="health care system", keywords="citizen science", keywords="mobile health", keywords="mobile app", keywords="digital health", keywords="digital technology", keywords="digital intervention", keywords="smartphone", keywords="diabetes", keywords="DM", keywords="type 2 diabetes", keywords="type 1 diabetes", abstract="Background: Technologies evolve at a breakneck pace, and the success of mobile health (mHealth) for people with type 2 diabetes mellitus (T2DM) depends on whether health care professionals, care management, government regulators, and consumers will adopt the technology as a viable solution to enhance patient self-management. Objective: In this study, we explored the challenges of the implementation of mHealth apps in care for patients with T2DM and determined to what extent these challenges complicate the dissemination, limit scale-up, and influence the sustainability of technological interventions for patients with T2DM. Methods: The nonadoption, abandonment, and challenges to scale-up, spread, and sustainability (NASSS) framework served as the basis for our study. The 7 domains of the NASSS framework were explored with a citizen science approach using questionnaires, semistructured in-depth interviews, and focus groups together with patients with T2DM, care professionals, technology developers, policy officers, and a patient organization. Results: Regarding the domain ``condition,'' being aware of their condition and changing lifestyle were crucial for patients with T2DM to get to grips with their life. The rapid development of health apps for T2DM was highlighted in the domain ``technology.'' Users should be aware of these apps and know how to use them. The domain ``value proposition'' included the patient perspective and elaborated on personal values, as well as care professionals who focus on personalized care and pressure on health care. Regarding the ``adopters,'' it is crucial to know who needs to use and introduce the apps. Responsibility, a shared vision, and resistance among care professionals were mentioned as important determinants for ``organization.'' Finally, the domain ``wider system'' showed the importance of involving multiple institutes, care guidelines, and reimbursements. Conclusions: This study investigated the implementation of mHealth apps in an early stage of the implementation process. Key stakeholders were involved, who attributed to the possibilities and limitations of the implementation. It is crucial to have a clear vision from an organizational perspective and specific prerequisites for implementation strategies at micro, meso, and macro levels. Essential strategies at the national level include guidelines for regulations, privacy, and security; the integration of mHealth into T2DM care guidelines; and sufficient reimbursement by health insurers. ", doi="10.2196/56917", url="https://diabetes.jmir.org/2024/1/e56917" } @Article{info:doi/10.2196/55982, author="Badwal, Singh Randeep and Cavo, Paul and Panesar, Mandip", title="Insights and Trends in Open Note Access: Retrospective Observational Study", journal="J Med Internet Res", year="2024", month="Dec", day="17", volume="26", pages="e55982", keywords="open note trends", keywords="open notes", keywords="open note access", keywords="open note use, open note sex", keywords="open note specialty", keywords="clinical note views", keywords="patient portal", keywords="patients", keywords="trends", keywords="hospitals", keywords="engagement", keywords="retrospective observational study", keywords="outpatient", keywords="assessment", keywords="older patients", keywords="adults", keywords="pandemic", keywords="COVID-19", abstract="Background: As of 2021, at least 4 out of every 5 hospitals offered patients access to clinical notes via a web-based patient portal, a number that is expected to grow because of the 21st Century Cures Act. There is limited data on how open note use may have evolved over time or which types of clinical interactions were viewed most in the outpatient setting. Objective: This study aims to analyze trends in outpatient open note access over time; characterize usage in terms of age, sex, and clinical interaction type; and assess the method of access to help uncover areas of improvement in patient engagement and identify further areas of research. Methods: A retrospective observational study was conducted at Erie County Medical Center from November 1, 2021, to December 31, 2022, to coincide with the time that open notes went live. Outpatient note access and account logs were downloaded from the portal and combined into a single dataset consisting of 18,384 note accesses by 4615 users, with column headings of the patient index, sex, age, note title that was accessed, clinical interaction type, time stamp of note creation, time stamp of access, and method of access (web vs mobile). A separate table was created with sex data for all 35,273 portal accounts. Microsoft Excel and Microsoft Power Query were used to combine and analyze the data. Results: During the study period, 4615 portal users viewed 12,150 documents for a total of 18,384 times, averaging 2.6 notes per patient viewed 4 times. Only 13.1\% (4615/35,273) of all portal inpatient and outpatient registrants viewed their outpatient notes. There was a female predominance in those who viewed notes (2926/4615, 63.4\%; P<.001), while 56.8\% (20,047/35,273) of all portal registrants were female. Users in their 30s and 50s accessed more notes than other age groups. The ratio of mobile-to-web access of notes tended to decrease as a function of increasing age, which was not observed in those aged ?90 years. Notes regarding COVID-19 assessments were the most accessed among all clinical interactions (4725/12,150, 38.9\%). Overall, the number of users accessing notes reached a maximum of 1968 before declining to 1027 by the end of the study period. Conclusions: Open note access was largely dominated by COVID-19 assessments, and the number of users viewing their notes has declined over time as the pandemic subsided. Furthermore, female patients and those aged in their 30s as well as 50s viewed more notes than other groups. Finally, the percentage of notes viewed via a mobile device tended to decrease as a function of increasing age, showing that web-based access of open notes is an important modality for older patients. ", doi="10.2196/55982", url="https://www.jmir.org/2024/1/e55982" } @Article{info:doi/10.2196/60794, author="Vordenberg, E. Sarah and Nichols, Julianna and Marshall, D. Vincent and Weir, Rebecca Kristie and Dorsch, P. Michael", title="Investigating Older Adults' Perceptions of AI Tools for Medication Decisions: Vignette-Based Experimental Survey", journal="J Med Internet Res", year="2024", month="Dec", day="16", volume="26", pages="e60794", keywords="older adults", keywords="survey", keywords="decisions", keywords="artificial intelligence", keywords="vignette", keywords="drug", keywords="pharmacology", keywords="pharmaceutic", keywords="medication", keywords="decision-making", keywords="geriatric", keywords="aging", keywords="surveys", keywords="attitude", keywords="perception", keywords="perspective", keywords="recommendation", keywords="electronic heath record", abstract="Background: Given the public release of large language models, research is needed to explore whether older adults would be receptive to personalized medication advice given by artificial intelligence (AI) tools. Objective: This study aims to identify predictors of the likelihood of older adults stopping a medication and the influence of the source of the information. Methods: We conducted a web-based experimental survey in which US participants aged ?65 years were asked to report their likelihood of stopping a medication based on the source of information using a 6-point Likert scale (scale anchors: 1=not at all likely; 6=extremely likely). In total, 3 medications were presented in a randomized order: aspirin (risk of bleeding), ranitidine (cancer-causing chemical), or simvastatin (lack of benefit with age). In total, 5 sources of information were presented: primary care provider (PCP), pharmacist, AI that connects with the electronic health record (EHR) and provides advice to the PCP (``EHR-PCP''), AI with EHR access that directly provides advice (``EHR-Direct''), and AI that asks questions to provide advice (``Questions-Direct'') directly. We calculated descriptive statistics to identify participants who were extremely likely (score 6) to stop the medication and used logistic regression to identify demographic predictors of being likely (scores 4-6) as opposed to unlikely (scores 1-3) to stop a medication. Results: Older adults (n=1245) reported being extremely likely to stop a medication based on a PCP's recommendation (n=748, 60.1\% [aspirin] to n=858, 68.9\% [ranitidine]) compared to a pharmacist (n=227, 18.2\% [simvastatin] to n=361, 29\% [ranitidine]). They were infrequently extremely likely to stop a medication when recommended by AI (EHR-PCP: n=182, 14.6\% [aspirin] to n=289, 23.2\% [ranitidine]; EHR-Direct: n=118, 9.5\% [simvastatin] to n=212, 17\% [ranitidine]; Questions-Direct: n=121, 9.7\% [aspirin] to n=204, 16.4\% [ranitidine]). In adjusted analyses, characteristics that increased the likelihood of following an AI recommendation included being Black or African American as compared to White (Questions-Direct: odds ratio [OR] 1.28, 95\% CI 1.06-1.54 to EHR-PCP: OR 1.42, 95\% CI 1.17-1.73), having higher self-reported health (EHR-PCP: OR 1.09, 95\% CI 1.01-1.18 to EHR-Direct: OR 1.13 95\%, CI 1.05-1.23), having higher confidence in using an EHR (Questions-Direct: OR 1.36, 95\% CI 1.16-1.58 to EHR-PCP: OR 1.55, 95\% CI 1.33-1.80), and having higher confidence using apps (EHR-Direct: OR 1.38, 95\% CI 1.18-1.62 to EHR-PCP: OR 1.49, 95\% CI 1.27-1.74). Older adults with higher health literacy were less likely to stop a medication when recommended by AI (EHR-PCP: OR 0.81, 95\% CI 0.75-0.88 to EHR-Direct: OR 0.85, 95\% CI 0.78-0.92). Conclusions: Older adults have reservations about following an AI recommendation to stop a medication. However, individuals who are Black or African American, have higher self-reported health, or have higher confidence in using an EHR or apps may be receptive to AI-based medication recommendations. ", doi="10.2196/60794", url="https://www.jmir.org/2024/1/e60794" } @Article{info:doi/10.2196/50491, author="Naccarella, Lucio and Rawstorn, Charles Jonathan and Kelly, Jaimon and Quested, Eleanor and Jenkinson, Stuart and Kwasnicka, Dominika", title="Unlocking the Potential for Implementation of Equitable, Digitally Enabled Citizen Science: Multidisciplinary Digital Health Perspective", journal="J Med Internet Res", year="2024", month="Dec", day="10", volume="26", pages="e50491", keywords="citizen science", keywords="digital health", keywords="equity", keywords="implementation science", keywords="community", keywords="research", keywords="health inequality", keywords="health equity", keywords="health integration", keywords="mental well-being", keywords="well-being", doi="10.2196/50491", url="https://www.jmir.org/2024/1/e50491" } @Article{info:doi/10.2196/55161, author="Wetzel, Anna-Jasmin and Preiser, Christine and M{\"u}ller, Regina and Joos, Stefanie and Koch, Roland and Henking, Tanja and Haumann, Hannah", title="Unveiling Usage Patterns and Explaining Usage of Symptom Checker Apps: Explorative Longitudinal Mixed Methods Study", journal="J Med Internet Res", year="2024", month="Dec", day="9", volume="26", pages="e55161", keywords="self-triage", keywords="eHealth", keywords="self-diagnosis", keywords="mHealth", keywords="mobile health", keywords="usage", keywords="patterns", keywords="predicts", keywords="prediction", keywords="symptoms checker", keywords="apps", keywords="applications", keywords="explorative longitudinal study", keywords="self care", keywords="self management", keywords="self-rated", keywords="mixed method", keywords="circumstances", keywords="General Linear Mixed Models", keywords="GLMM", keywords="qualitative data", keywords="content analysis", keywords="Kuckartz", keywords="survey", keywords="participants", keywords="users", abstract="Background: Symptom checker apps (SCA) aim to enable individuals without medical training to classify perceived symptoms and receive guidance on appropriate actions, such as self-care or seeking professional medical attention. However, there is a lack of detailed understanding regarding the contexts in which individuals use SCA and their opinions on these tools. Objective: This mixed methods study aims to explore the circumstances under which medical laypeople use SCA and to identify which aspects users find noteworthy after using SCA. Methods: A total of 48 SCA users documented their medical symptoms, provided open-ended responses, and recorded their SCA use along with other variables over 6 weeks in a longitudinal study. Generalized linear mixed models with and those without regularization were applied to consider the hierarchical structure of the data, and the models' outcomes were evaluated for comparison. Qualitative data were analyzed through Kuckartz qualitative content analysis. Results: Significant predictors of SCA use included the initial occurrence of symptoms, day of measurement (odds ratio [OR] 0.97), self-rated health (OR 0.80, P<.001), and the following International Classification in Primary Care-2--classified symptoms, that are general and unspecified (OR 3.33, P<.001), eye (OR 5.56, P=.001), cardiovascular (OR 8.33, P<.001), musculoskeletal (OR 5.26, P<.001), and skin (OR 4.76, P<.001). The day of measurement and self-rated health showed minor importance due to their small effect sizes. Qualitative analysis highlighted four main themes: (1) reasons for using SCA, (2) diverse affective responses, (3) a broad spectrum of behavioral reactions, and (4) unmet needs including a lack of personalization. Conclusions: The emergence of new and unfamiliar symptoms was a strong determinant for SCA use. Specific International Classification in Primary Care--rated symptom clusters, particularly those related to cardiovascular, eye, skin, general, and unspecified symptoms, were also highly predictive of SCA use. The varied applications of SCA fit into the concept of health literacy as bricolage, where SCA is leveraged as flexible tools by patients based on individual and situational requirements, functioning alongside other health care resources. ", doi="10.2196/55161", url="https://www.jmir.org/2024/1/e55161" } @Article{info:doi/10.2196/53229, author="Ewing, P. Aldenise and Tounkara, Fode and Marshall, Daniel and Henry, V. Abhishek and Abdel-Rasoul, Mahmoud and McElwain, Skylar and Clark, Justice and Hefner, L. Jennifer and Zaire, J. Portia and Nolan, S. Timiya and Tarver, L. Willi and Doubeni, A. Chyke", title="Examining Racial Disparities in Colorectal Cancer Screening and the Role of Online Medical Record Use: Findings From a Cross-Sectional Study of a National Survey", journal="JMIR Cancer", year="2024", month="Dec", day="4", volume="10", pages="e53229", keywords="colorectal cancer", keywords="cancer screening", keywords="early detection", keywords="Health Information National Trends Survey", keywords="cancer disparities", keywords="online medical records", keywords="secondary data analysis", abstract="Background: Colorectal cancer (CRC) is the second leading cause of cancer-related deaths in the United States. Early detection via routine CRC screening can significantly lower risks for CRC-specific morbidity and mortality. Public health initiatives between 2000 and 2015 nearly doubled CRC screening rates for some US adults. However, screening rates remain lowest for adults aged 45?49 years (20\%), patients of safety net health care facilities (42\%), adults without insurance (44\%), and other subgroups compared with national averages (72\%). Given the evolving landscape of digital health care and trends in web-based health information--seeking behaviors, leveraging online medical record (OMR) systems may be an underutilized resource to promote CRC screening utilization. Recognizing trends in OMR usage and patient demographics may enhance digital inclusion---a key social determinant of health---and support equitable web-based interventions aimed at boosting CRC screening across diverse populations. Objective: This study examined the association of accessing an OMR with CRC screening utilization and corresponding sociodemographic characteristics of US adults. Methods: In 2023, we conducted a secondary data analysis using a pooled, weighted sample from Health Information National Trends Survey (HINTS) 5 cycles, 2, 3, and 4 (2018?2020), a nationally representative survey assessing how US adults access and use health-related information. We analyzed the association between sociodemographic characteristics, medical conditions, OMR access, and CRC screening behaviors via logistic regression. Results: The sample included adults aged 45?75 years (N=5143). The mean age was 59 (SD 8) years for those who reported CRC screening and 52 (SD 6) years for those never screened. Nearly 70\% (4029/5143) of participants reported CRC screening and 52\% (2707/5143) reported OMR access in the past year. Adjusted odds of CRC screening were higher among non-Hispanic African American or Black adults than among non-Hispanic White adults (odds ratio [OR] 1.76, 95\% CI 1.22?2.53), adults who accessed an OMR (OR 1.89, 95\% CI 1.45?2.46), older individuals (OR 1.18, 95\% CI 1.16?1.21), the insured (OR 3.69, 95\% CI 2.34?5.82), and those with a professional or graduate degree versus those with a high school diploma or less (OR 2.65, 95\% CI 1.28?5.47). Individuals aged 65?75 years were significantly more likely (P<.001) to be screened (1687/1831, 91\%) than those aged 45?49 years (190/610, 29\%). Conclusions: Promoting OMR access, especially among the most disadvantaged Americans, may assist in reaching national screening goals. Emphasis should be placed on the mutability of OMR use compared with most other statistically significant associations with CRC screening behaviors. OMR access provides an intervenable means of promoting CRC education and screening, especially among those facing structural barriers to cancer diagnoses and care. Future research should focus on tailored and accessible interventions that expand OMR access, particularly for younger populations. ", doi="10.2196/53229", url="https://cancer.jmir.org/2024/1/e53229" } @Article{info:doi/10.2196/59717, author="Linstad, Helen Line and Bj{\o}rn{\aa}, Hilde and Moen, Anne and Tunby Kristiansen, Truls and Hansen, Helen Anne", title="Investigating the Norwegian eHealth Governance Model: Document Study", journal="J Med Internet Res", year="2024", month="Dec", day="4", volume="26", pages="e59717", keywords="eHealth policy", keywords="fragmented decision authority", keywords="top-down governance", keywords="bottom-up network", keywords="participation", keywords="electronic health record", abstract="Background: Governments and policy makers struggle to achieve a balance between hierarchical steering and horizontal governance in systems characterized by fragmented decision authority and multiple interests. To realize its One Citizen--One Journal eHealth policy vision, the Norwegian government established a special eHealth board of stakeholders to create an inclusive governance model that aligned stakeholders' interests with the?government's ambitions through coordination and consensus. Little empirical knowledge exists on how countries realize inclusive governance models. Objective: This study aims to investigate how the Norwegian inclusive eHealth governance model was developed as a tool to align the government's policy ambitions with stakeholders' concerns from January 2012 to December 2022. Methods: This document study used a thematic analysis based on a constructivist research approach. We included 16 policy documents and 175 consultation response documents issued between January 2012 and December 2022 related to the Norwegian One Citizen--One Journal policy implementation process. The themes were constructed deductively from a review of governance models and public governance theory and were applied as our analytical lens to each document. The findings were interpreted, analyzed, and synthesized. Results: The national policy implementation process progressed through 3 phases, with changes in stakeholder inclusion and perceived influence on the decision-making process characterizing transitions from phase to phase. Tension developed between 2 contrasting views regarding top-down government authority and stakeholders' autonomy. The view of the regional health trusts, municipalities, health care professional organizations, and industry actors contrasted with that of the patient organizations. Governmental insensitivity to participation, lack of transparency, and decreasing trust by stakeholder groups challenged the legitimacy of the inclusive governance model. Conclusions: We illustrated that Norway's One Citizen--One Journal policy trajectory was characterized by a process that unfolded across 3 distinct phases. The process was characterized by 2 contrasting stakeholder perspectives. Finally, it was shaped by diminishing trust in the inclusive governance model. The National eHealth Governance Board faced challenges in establishing legitimacy as a top-down inclusive governance model, primarily attributed to its addressing of participation, transparency, and trust dilemmas. Such dilemmas represent significant obstacles to inclusive governance models and require ongoing governmental vigilance and responsiveness from governmental entities. ", doi="10.2196/59717", url="https://www.jmir.org/2024/1/e59717" } @Article{info:doi/10.2196/60353, author="Jolliff, Anna and Holden, J. Richard and Valdez, Rupa and Coller, J. Ryan and Patel, Himalaya and Zuraw, Matthew and Linden, Anna and Ganci, Aaron and Elliott, Christian and Werner, E. Nicole", title="Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers", journal="J Med Internet Res", year="2024", month="Dec", day="3", volume="26", pages="e60353", keywords="user-centered design", keywords="family caregivers", keywords="mobile health", keywords="digital health", keywords="web-based intervention", keywords="stakeholder engagement", keywords="patient engagement", keywords="community-based participatory action research", keywords="community participation", keywords="qualitative evaluation", abstract="Background: Digital health interventions are a promising method for delivering timely support to underresourced family caregivers. The uptake of digital health interventions among caregivers may be improved by engaging caregivers in participatory design (PD). In recent years, there has been a shift toward conducting PD remotely, which may enable participation by previously hard-to-reach groups. However, little is known regarding how best to facilitate engagement in remote PD among family caregivers. Objective: This study aims to (1) understand the context, quality, and outcomes of family caregivers' engagement experiences in remote PD and (2) learn which aspects of the observed PD approach facilitated engagement or need to be improved. Methods: We analyzed qualitative and quantitative data from evaluation and reflection surveys and interviews completed by research and community partners (family caregivers) across 4 remote PD studies. Studies focused on building digital health interventions for family caregivers. For each study, community partners met with research partners for 4 to 5 design sessions across 6 months. After each session, partners completed an evaluation survey. In 1 of the 4 studies, research and community partners completed a reflection survey and interview. Descriptive statistics were used to summarize quantitative evaluation and reflection survey data, while reflexive thematic analysis was used to understand qualitative data. Results: In 62.9\% (83/132) of evaluations across projects 1-3, participants described the session as ``very effective.'' In 74\% (28/38) of evaluations for project 4, participants described feeling ``extremely satisfied'' with the session. Qualitative data relating to the engagement context identified that the identities of partners, the technological context of remote PD, and partners' understanding of the project and their role all influenced engagement. Within the domain of engagement quality, relationship-building and co-learning; satisfaction with prework, design activities, time allotted, and the final prototype; and inclusivity and the distribution of influence contributed to partners' experience of engagement. Outcomes of engagement included partners feeling an ongoing interest in the project after its conclusion, gratitude for participation, and a sense of meaning and self-esteem. Conclusions: These results indicate high satisfaction with remote PD processes and few losses specific to remote PD. The results also demonstrate specific ways in which processes can be changed to improve partner engagement and outcomes. Community partners should be involved from study inception in defining the problem to be solved, the approach used, and their roles within the project. Throughout the design process, online tools may be used to check partners' satisfaction with design processes and perceptions of inclusivity and power-sharing. Emphasis should be placed on increasing the psychosocial benefits of engagement (eg, sense of community and purpose) and increasing opportunities to participate in disseminating findings and in future studies. ", doi="10.2196/60353", url="https://www.jmir.org/2024/1/e60353" } @Article{info:doi/10.2196/60258, author="Chen, You and Lehmann, U. Christoph and Malin, Bradley", title="Digital Information Ecosystems in Modern Care Coordination and Patient Care Pathways and the Challenges and Opportunities for AI Solutions", journal="J Med Internet Res", year="2024", month="Dec", day="2", volume="26", pages="e60258", keywords="patient care pathway", keywords="care journey", keywords="care coordination", keywords="digital information ecosystem", keywords="digital technologies", keywords="artificial intelligence", keywords="information interoperability", keywords="information silos", keywords="workload", keywords="information retrieval", keywords="care transitions", keywords="patient-reported outcome measures", keywords="clinical workflow", keywords="usability", keywords="user experience workflow", keywords="health care information systems", keywords="networks of health care professionals", keywords="patient information flow", doi="10.2196/60258", url="https://www.jmir.org/2024/1/e60258" } @Article{info:doi/10.2196/52715, author="H{\"a}rk{\"o}nen, Henna and Myllykangas, Kirsi and K{\"a}rpp{\"a}, Mikko and Rasmus, Maaria Kirsi and Gomes, Francis Julius and Immonen, Milla and Hyv{\"a}m{\"a}ki, Piia and Jansson, Miia", title="Perspectives of Clients and Health Care Professionals on the Opportunities for Digital Health Interventions in Cerebrovascular Disease Care: Qualitative Descriptive Study", journal="J Med Internet Res", year="2024", month="Dec", day="2", volume="26", pages="e52715", keywords="cerebrovascular disease", keywords="stroke", keywords="digitalization", keywords="interventions", keywords="health care professional", keywords="client", keywords="patient", keywords="mHealth", keywords="mobile health", keywords="application", keywords="digital health", keywords="smartphones", keywords="health system", keywords="qualitative", keywords="descriptive study", keywords="brain", keywords="blood vessel disease", keywords="cerebrovascular disorder", keywords="Finland", keywords="interviews", keywords="efficiency", keywords="information", keywords="quality", keywords="accountability", keywords="neurology", keywords="neuroscience", keywords="brain injury", keywords="mobile phone", abstract="Background: Cerebrovascular diseases (CVDs) are a major and potentially increasing burden to public health. Digital health interventions (DHIs) could support access to and provision of high-quality health care (eg, outcomes, safety, and satisfaction), but the design and development of digital solutions and technologies lack the assessment of user needs. Research is needed to identify opportunities to address health system challenges and improve CVD care with primary users of services as the key informants of everyday requirements. Objective: This study aims to identify opportunities for DHIs from clients' and health care professionals' perspectives to address health system challenges and improve CVD care. Methods: This study used a qualitative, descriptive approach. Semistructured, in-person interviews were conducted with 22 clients and 26 health care professionals in a single tertiary-level hospital in Finland between August 2021 and March 2022. The data were analyzed using a deductive and inductive content analysis. Results: Identified opportunities for DHIs in CVD care were organized according to clients, health care professionals, and data services and classified into 14 main categories and 27 generic categories, with 126 subcategories of requirements. DHIs for clients could support the long-term management of health and life changes brought on by CVD. They could provide access to personal health data and offer health information, support, and communication possibilities for clients and their caregivers. Health care professionals would benefit from access to relevant patient data, along with systems and tools that support competence and decision-making. Intersectoral and professional collaboration could be promoted with digital platforms and care pathways. DHIs for data services could enhance care planning and coordination with novel predictive data and interoperable systems for data exchange. Conclusions: The combined study of client and health care professional perspectives identified several opportunities and requirements for DHIs that related to the information, availability, quality, acceptability, utilization, efficiency, and accountability challenges of health systems. These findings provide valuable social insights into digital transformation and the emerging design, development, and use of user-centered technologies and applications to address challenges and improve CVD care and health care. ", doi="10.2196/52715", url="https://www.jmir.org/2024/1/e52715", url="http://www.ncbi.nlm.nih.gov/pubmed/39622027" } @Article{info:doi/10.2196/63434, author="Mitchell, E. Suzanne and Kallen, A. Michael and Troost, P. Jonathan and De La Cruz, A. Barbara and Bragg, Alexa and Martin-Howard, Jessica and Moldovan, Ioana and Miner, A. Jennifer and Jack, W. Brian and Carlozzi, E. Noelle", title="Four New Patient-Reported Outcome Measures Examining Health-Seeking Behavior in Persons With Type 2 Diabetes Mellitus (REDD-CAT): Instrument Development Study", journal="JMIR Diabetes", year="2024", month="Nov", day="22", volume="9", pages="e63434", keywords="diabetes mellitus", keywords="social determinants of health", keywords="patient-reported outcome measures", keywords="outcomes assessment", keywords="health care", keywords="patient reported", keywords="health-seeking behavior", keywords="type 2 diabetes", keywords="hospitalization", keywords="diabetes computer adaptive test", keywords="primary care", keywords="socioeconomic", keywords="assessments", abstract="Background: The management of type 2 diabetes mellitus (T2DM) includes mastery of complex care activities, self-management skills, and routine health care encounters to optimize glucose control and achieve good health. Given the lifelong course of T2DM, patients are faced with navigating complex medical and disease-specific information. This health-seeking behavior is a driver of health disparities and is associated with hospitalization and readmission. Given that health-seeking behavior is a potentially intervenable social determinant of health, a better understanding of how people navigate these complex systems is warranted. Objective: To address this need, we aimed to develop new patient-reported outcome (PRO) measures that evaluate health-seeking behavior in persons with T2DM. These new PROs were designed to be included in the Re-Engineered Discharge for Diabetes-Computer Adaptive Test (REDD-CAT) measurement system, which includes several other PROs that capture the importance of social determinants of health. Methods: Overall, 225 participants with T2DM completed 56 self-report items that examined health-seeking behaviors. Classical Test Theory and Item Response Theory were used for measurement development. Exploratory factor analysis (EFA; criterion ratio of eigenvalue 1 to eigenvalue 2 being >4; variance for eigenvalue 1 ?40\%) and confirmatory factor analysis (CFA; criterion 1-factor CFA loading <.50; 1-factor CFA residual correlation >.20; comparative fit index ?0.90; Tucker-Lewis index ?0.90; root mean square error of approximation <0.15) were used to determine unidimensional sets of items. Items with sparse responses, low-adjusted total score correlations, nonmonotonicity, low factor loading, and high residual correlations of high error modification indices were candidates for exclusion. A constrained graded response model was used to examine item misfit, and differential item functioning was examined to identify item bias. Cronbach $\alpha$ was used to examine internal consistency reliability for the new PROs (criterion ?0.70), and floor and ceiling effects were examined (criterion ?20\%). Results: Four unidimensional sets of items were supported by EFA (all EFA eigenvalue ratios >4; variance for eigenvalue 1=41.4\%-67.3\%) and CFA (fit statistics all exceeded criterion values). This included (1) ``Health-Seeking Behavior: PCP-Specific'' (6 items); (2) ``Health-Seeking Behavior: General Beliefs'' (13 items); (3) ``Health-Seeking Behavior: Family or Friends-Specific'' (5 items); and (4) ``Health-Seeking Behavior: Internet-Specific'' (4 items). All items were devoid of differential item functioning for age, sex, education, or socioeconomic status factors. ``Health-Seeking Behavior: General Beliefs'' was developed to include both a computer adaptive test and a 6-item short form version; all other PROs were developed as static short forms. The psychometric reliability of these new PROs was supported; internal consistency ranged from acceptable to excellent (Cronbach $\alpha$=.78-.91), and measures were free of significant floor or ceiling effects (floor effects range: 0\%-8.9\%; ceiling effects range: 0\%-8.4\%). Conclusions: The new REDD-CAT Health-Seeking Behavior PROs provide reliable assessments of health-seeking behaviors among those with T2DM. ", doi="10.2196/63434", url="https://diabetes.jmir.org/2024/1/e63434", url="http://www.ncbi.nlm.nih.gov/pubmed/39576685" } @Article{info:doi/10.2196/52703, author="Schmidt, Simone and Boulton, Adam and Butler, Benita and Fazio, Timothy", title="Exploring Patient, Proxy, and Clinician Perspectives on the Value and Impact of an Inpatient Portal: A Reflexive Thematic Analysis", journal="JMIR Hum Factors", year="2024", month="Nov", day="20", volume="11", pages="e52703", keywords="inpatient portal", keywords="patient perspective", keywords="clinician perspective", keywords="information sharing", keywords="clinician-patient relationship", keywords="person-centered care", keywords="reflexive thematic analysis", keywords="qualitative research", keywords="mobile phone", abstract="Background: Research exploring perspectives on inpatient portals reports that patients desire the information affordances of inpatient portals, and clinicians recognize their value for improving patient experience but also express caution regarding sharing aspects of the medical record. This study contributed to the?existing literature on inpatient portals by considering the psychosocial dimension of clinician resistance to information sharing with inpatients and the power dynamic associated with clinician-patient information asymmetry. Along with the information affordances commonly discussed in this area, this study explored perspectives on the novel option to audio record consultations via an inpatient portal. Objective: This study aims to understand patient, proxy, and clinician perspectives on the value and impact of an inpatient portal within the Australian context. It explores clinician resistance and receptivity to sharing aspects of the medical record with patients and the power dynamic that characterizes the relationship between clinician and patient. It considers how an inpatient portal might assist in the transformation of this relationship such that this relationship could be characterized by greater information symmetry. Methods: Interviews were conducted with patients (n=20), proxies (n=4), and clinicians (n=21) recruited from 3 areas within the Royal Melbourne Hospital, where the portal would later be implemented. A largely inductive reflexive thematic analysis was conducted. Results: Patient and proxy participants reported that they wanted to understand what is happening in their care for peace of mind and that an inpatient portal could support this understanding. Clinician participants reflected on how they might transform their information-sharing practice to provide greater transparency in their relationship with patients. Participants considered the types of information that could be shared and how this information could be shared via an inpatient portal. Four key themes were generated: (1) affording the patient and proxy awareness, control, and reassurance through sharing accessible and meaningful information; (2) protecting the clinician and safeguarding quality health care in information sharing; (3) flexibly deploying the functions depending upon clinician, patient, proxy, and context; and (4) moving toward person-centered care: empowerment and equity via an inpatient portal. Conclusions: An inpatient portal provides an opportunity to reconceptualize the medical record and how this information might be shared with patients while they are admitted to the?hospital, such that they have more understanding as to what is happening in their care, which ultimately supports their well-being. The transition to a more transparent information-sharing culture in the Australian hospital context will take time. An inpatient portal is a critical step in facilitating this transition and creating more informational symmetry in the clinician-patient relationship. ", doi="10.2196/52703", url="https://humanfactors.jmir.org/2024/1/e52703" } @Article{info:doi/10.2196/56473, author="Alomar, Dalia and Almashmoum, Maryam and Eleftheriou, Iliada and Whelan, Pauline and Ainsworth, John", title="The Impact of Patient Access to Electronic Health Records on Health Care Engagement: Systematic Review", journal="J Med Internet Res", year="2024", month="Nov", day="20", volume="26", pages="e56473", keywords="electronic health records", keywords="personal health record", keywords="health care engagement", keywords="empowerment", keywords="patient experience", keywords="patient satisfaction", keywords="health care services", keywords="systematic review", abstract="Background: Health information technologies, including electronic health records (EHRs), have revolutionized health care delivery. These technologies promise to enhance the efficiency and quality of care through improved patient health information management. Despite the transformative potential of EHRs, the extent to which patient access contributes to increased engagement with health care services within different clinical setting remains a distinct and underexplored facet. Objective: This systematic review aims to investigate the impact of patient access to EHRs on health care engagement. Specifically, we seek to determine whether providing patients with access to their EHRs contributes to improved engagement with health care services. Methods: A comprehensive systematic review search was conducted across various international databases, including Ovid MEDLINE, Embase, PsycINFO, and CINAHL, to identify relevant studies published from January 1, 2010, to November 15, 2023. The search on these databases was conducted using a combination of keywords and Medical Subject Heading terms related to patient access to electronic health records, patient engagement, and health care services. Studies were included if they assessed the impact of patient access to EHRs on health care engagement and provided evidence (quantitative or qualitative) for that. The guidelines of the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 statement were followed for study selection, data extraction, and quality assessment. The included studies were assessed for quality using the Mixed Methods Appraisal Tool, and the results were reported using a narrative synthesis. Results: The initial search from the databases yielded 1737 studies, to which, after scanning their reference lists, we added 10 studies. Of these 1747 studies, 18 (1.03\%) met the inclusion criteria for the final review. The synthesized evidence from these studies revealed a positive relationship between patient access to EHRs and health care engagement, addressing 6 categories of health care engagement dimensions and outcomes, including treatment adherence and self-management, patient involvement and empowerment, health care communication and relationship, patient satisfaction and health outcomes, use of health care resources, and usability concerns and barriers. Conclusions: The findings suggested a positive association between patient access to EHRs and health care engagement. The implications of these findings for health care providers, policy makers, and patients should be considered, highlighting the potential benefits and challenges associated with implementing and promoting patient access to EHRs. Further research directions have been proposed to deepen our understanding of this dynamic relationship. ", doi="10.2196/56473", url="https://www.jmir.org/2024/1/e56473" } @Article{info:doi/10.2196/60692, author="Gerchow, Lauren and Lanier, Yzette and Fayard, Anne-Laure and Squires, Allison", title="Cocreating First Steps, a Toolkit to Improve Adolescent Sexual and Reproductive Health Services: Qualitative Human-Centered Design Study With Hispanic and Black Adolescent Mothers in New York City", journal="JMIR Pediatr Parent", year="2024", month="Nov", day="19", volume="7", pages="e60692", keywords="adolescent", keywords="reproductive health", keywords="sexual health", keywords="cocreation", keywords="co-design", keywords="human-centered design", abstract="Background: Adolescent voices are frequently excluded from sexual and reproductive health (SRH) research. Despite progressive policies and access to SRH care, adolescents in New York City who live in neighborhoods with high poverty and those who identify as Black or Hispanic experience poor SRH outcomes, including high rates of unplanned pregnancies and sexually transmitted infections. Objective: This qualitative study aims to guide Black and Hispanic adolescent mothers in identifying problem areas in SRH care and cocreate health service recommendations with input from health care stakeholders to address those problems and improve SRH experiences. Methods: Through ethnographic interview methods, adolescent mothers in New York City shared their experiences from before pregnancy through parenting and identified problem areas in adolescent SRH services and education. Data were analyzed inductively and using situational analysis. Adolescent participants attended 2 cocreation workshops. In the first workshop, they confirmed interview findings, set priorities, and created rough prototypes. Following the first workshop, health care providers were interviewed to inform refinement of the rough prototypes. Adolescents further developed prototypes in the second cocreation workshop and named the resulting toolkit. Results: A total of 16 adolescent mothers participated in 47 interviews, and 10 (63\%) participants attended at least 1 cocreation workshop. They highlighted deficiencies in sexual health education and emphasized the roles of health care providers and parents, rather than schools, in improving it. Adolescent participants designed recommendations for adolescents and health care providers to support quality conversations between adolescents, parents, and health care providers and created a preappointment checklist to help young patients initiate conversations with health care providers. Young participants stressed that sex education should address topics beyond sexually transmitted infections and pregnancy, such as emotional health and relationships. They created guidelines for health care providers outlining communication strategies to provide respectful, unbiased care and contraceptive counseling that encourages adolescent autonomy. Participants shared specific suggestions for how to support young parents respectfully. Health care stakeholders recommended adding information on confidential care; supporting lesbian, gay, bisexual, transgender, and queer youth; and focusing on improving communication between health care providers and patients rather than creating educational materials. In the second workshop, adolescent participants revised the prototypes based on feedback from health care stakeholders and named the toolkit of recommendations First Steps. Conclusions: This study highlighted the important roles that parents and health care workers play in adolescent sexual health education. Cocreated toolkits offer a practical approach for health care providers to engage adolescents and their parents in meaningful, adolescent-centered conversations that can promote health, safety, and well-being. ", doi="10.2196/60692", url="https://pediatrics.jmir.org/2024/1/e60692" } @Article{info:doi/10.2196/50497, author="ten Klooster, Iris and Kip, Hanneke and Beyer, L. Sina and van Gemert-Pijnen, C. Lisette J. E. W. and Kelders, M. Saskia", title="Clarifying the Concepts of Personalization and Tailoring of eHealth Technologies: Multimethod Qualitative Study", journal="J Med Internet Res", year="2024", month="Nov", day="13", volume="26", pages="e50497", keywords="eHealth", keywords="personalization", keywords="tailoring", keywords="segmentation", keywords="adaptation", keywords="interviews", keywords="definition", abstract="Background: Although personalization and tailoring have been identified as alternatives to a ``one-size-fits-all'' approach for eHealth technologies, there is no common understanding of these two concepts and how they should be applied. Objective: This study aims to describe (1) how tailoring and personalization are defined in the literature and by eHealth experts, and what the differences and similarities are; (2) what type of variables can be used to segment eHealth users into more homogeneous groups or at the individual level; (3) what elements of eHealth technologies are adapted to these segments; and (4) how the segments are matched with eHealth adaptations. Methods: We used a multimethod qualitative study design. To gain insights into the definitions of personalization and tailoring, definitions were collected from the literature and through interviews with eHealth experts. In addition, the interviews included questions about how users can be segmented and how eHealth can be adapted accordingly, and responses to 3 vignettes of examples of eHealth technologies, varying in personalization and tailoring strategies to elicit responses about views from stakeholders on how the two components were applied and matched in different contexts. Results: A total of 28 unique definitions of tailoring and 16 unique definitions of personalization were collected from the literature and interviews. The definitions of tailoring and personalization varied in their components, namely adaptation, individuals, user groups, preferences, symptoms, characteristics, context, behavior, content, identification, feedback, channel, design, computerization, and outcomes. During the interviews, participants mentioned 9 types of variables that can be used to segment eHealth users, namely demographics, preferences, health variables, psychological variables, behavioral variables, individual determinants, environmental information, intervention interaction, and technology variables. In total, 5 elements were mentioned that can be adapted to those segments, namely channeling, content, graphical, functionalities, and behavior change strategy. Participants mentioned substantiation methods and variable levels as two components for matching the segmentations with adaptations. Conclusions: Tailoring and personalization are multidimensional concepts, and variability and technology affordances seem to determine whether and how personalization and tailoring should be applied to eHealth technologies. On the basis of our findings, tailoring and personalization can be differentiated by the way that segmentations and adaptations are matched. Tailoring matches segmentations and adaptations based on general group characteristics using if-then algorithms, whereas personalization involves the direct insertion of user information (such as name) or adaptations based on individual-level inferences. We argue that future research should focus on how inferences can be made at the individual level to further develop the field of personalized eHealth. ", doi="10.2196/50497", url="https://www.jmir.org/2024/1/e50497" } @Article{info:doi/10.2196/51900, author="Deinboll, Anne and Moe, Fredriksen Cathrine and Ludvigsen, Spliid Mette", title="Participation in eHealth Communication Interventions Among Patients Undergoing Hemodialysis: Scoping Review", journal="J Med Internet Res", year="2024", month="Nov", day="11", volume="26", pages="e51900", keywords="eHealth", keywords="electronic health records", keywords="hemodialysis", keywords="patient participation", keywords="renal dialysis", keywords="renal insufficiency", keywords="chronic", keywords="mobile phone", abstract="Background: eHealth communication interventions have been shown to offer individuals with chronic kidney disease the opportunity to embrace dialysis therapies with greater confidence, the potential to obtain better clinical outcomes, and an increased quality of life. eHealth is an emerging field that offers diverse, flexible designs and delivery options. However, existing evidence on eHealth communication among patients undergoing hemodialysis is sparse and scattered and lacks systematization. Objective: This scoping review aims to identify and map the current evidence on patient participation in eHealth communication interventions. We aimed to map the associations between interventions and electronic health records, the participative role of individuals living with chronic kidney disease and undergoing hemodialysis, and the barriers to and facilitators of patient involvement in eHealth communication with health care professionals. Methods: This study used the Joanna Briggs Institute methodology for conducting a scoping review. Studies eligible for inclusion were those that included adult patients (aged >18 y) undergoing all types of hemodialysis, including prescheduled in-center hemodialysis and conventional home-based hemodialysis. Systematic searches were completed in Ovid MEDLINE, Ovid Embase, EBSCOhost CINAHL with Full Text, Scopus, and ProQuest Dissertations and Theses. Extracted data from the included studies were presented in figures and tables along with descriptions that responded to the research questions. This review was reported according to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Results: In total, 9 peer-reviewed studies were included. The main result was a low participative patient role and a vaguely described link to electronic health records. The key participative facilitators were availability of and access to the intervention; security, trust, and confidence; patient knowledge of their health situation and use of self-care; and patient preparedness for an uncertain future health situation and the ability to relate to family and friends about it. The key participative barriers were lack of availability of and access to information, mistrust and lack of safety, lack of knowledge of health situation and self-care, and relational issues. All barriers and facilitators were related to health literacy. Conclusions: This scoping review summarizes 4 specific and 3 nonspecific eHealth communication interventions developed and evaluated in various studies involving patients receiving hemodialysis. A knowledge gap exists between low levels of patient participation in eHealth communication and patients' limited access to electronic health records. eHealth communication interventions should implement patient participation and focus on the fact that different modalities of eHealth communication can complement face-to-face communication. International Registered Report Identifier (IRRID): RR2-10.2196/38615 ", doi="10.2196/51900", url="https://www.jmir.org/2024/1/e51900" } @Article{info:doi/10.2196/58771, author="Qureshi, Nabeel and Hays, D. Ron and Herman, M. Patricia", title="Dropout in a Longitudinal Survey of Amazon Mechanical Turk Workers With Low Back Pain: Observational Study", journal="Interact J Med Res", year="2024", month="Nov", day="11", volume="13", pages="e58771", keywords="chronic low back pain", keywords="Mechanical Turk", keywords="MTurk", keywords="survey attrition", keywords="survey weights", keywords="Amazon", keywords="occupational health", keywords="manual labor", abstract="Background: Surveys of internet panels such as Amazon's Mechanical Turk (MTurk) are common in health research. Nonresponse in longitudinal studies can limit inferences about change over time. Objective: This study aimed to (1) describe the patterns of survey responses and nonresponse among MTurk members with back pain, (2) identify factors associated with survey response over time, (3) assess the impact of nonresponse on sample characteristics, and (4) assess how well inverse probability weighting can account for differences in sample composition. Methods: We surveyed adult MTurk workers who identified as having back pain. We report participation trends over 3 survey waves and use stepwise logistic regression to identify factors related to survey participation in successive waves. Results: A total of 1678 adults participated in wave 1. Of those, 983 (59\%) participated in wave 2 and 703 (42\%) in wave 3. Participants who did not drop out took less time to complete previous surveys (30 min vs 35 min in wave 1, P<.001; 24 min vs 26 min in wave 2, P=.02) and reported having fewer health conditions (5.88 vs 6.6, P<.001). In multivariate models predicting responding at wave 2, lower odds of participation were associated with more time to complete the baseline survey (odds ratio [OR] 0.98, 95\% CI 0.97-0.99), being Hispanic (compared with non-Hispanic, OR 0.69, 95\% CI 0.49-0.96), having a bachelor's degree as their terminal degree (compared with all other levels of education, OR 0.58, 95\% CI 0.46-0.73), having more pain interference and intensity (OR 0.75, 95\% CI 0.64-0.89), and having more health conditions. In contrast, older respondents (older than 45 years age compared with 18-24 years age) were more likely to respond to the wave 2 survey (OR 2.63 and 3.79, respectively) and those whose marital status was divorced (OR 1.81) and separated (OR 1.77) were also more likely to respond to the wave 2 survey. Weighted analysis showed slight differences in sample demographics and conditions and larger differences in pain assessments, particularly for those who responded to wave 2. Conclusions: Longitudinal studies on MTurk have large, differential dropouts between waves. This study provided information about the individuals more likely to drop out over time, which can help researchers prepare for future surveys. ", doi="10.2196/58771", url="https://www.i-jmr.org/2024/1/e58771" } @Article{info:doi/10.2196/54018, author="Zhang, Guang-Wei and Li, Bin and Gu, Zheng-Min and Yang, Wei-Feng and Wang, Yi-Ran and Li, Hui-Jun and Zheng, Han-Bing and Yue, Ying-Xu and Wang, Kui-Zhong and Gong, Mengchun and Gong, Da-Xin", title="In-Depth Examination of the Functionality and Performance of the Internet Hospital Information Platform: Development and Usability Study", journal="J Med Internet Res", year="2024", month="Nov", day="8", volume="26", pages="e54018", keywords="internet hospital", keywords="smart hospital", keywords="mobile applications", keywords="operational data", keywords="information system", keywords="online service", keywords="patient service", keywords="management tool", keywords="electronic prescriptions", keywords="medical education", keywords="integration", abstract="Background: Internet hospitals (IHs) have rapidly developed as a promising strategy to address supply-demand imbalances in China's medical industry, with their capabilities directly dependent on information platform functionality. Furthermore, a novel theory of ``Trinity'' smart hospital has provided advanced guidelines on IH constructions. Objective: This study aimed to explore the construction experience, construction models, and development prospects based on operational data from IHs. Methods: Based on existing information systems and internet service functionalities, our hospital has built a ``Smart Hospital Internet Information Platform (SHIIP)'' for IH operations, actively to expand online services, digitalize traditional health care, and explore health care services modes throughout the entire process and lifecycle. This article encompasses the platform architecture design, technological applications, patient service content and processes, health care professional support features, administrative management tools, and associated operational data. Results: Our platform has presented a set of data, including 82,279,669 visits, 420,120 online medical consultations, 124,422 electronic prescriptions, 92,285 medication deliveries, 6,965,566 prediagnosis triages, 4,995,824 offline outpatient appointments, 2025 medical education articles with a total of 15,148,310 views, and so on. These data demonstrate the significant role of IH as an indispensable component of our physical hospital services, with deep integration between online and offline health care systems. Conclusions: The upward trends in various data metrics indicate that our IH has gained significant recognition and usage among both the public and healthcare workers, and may have promising development prospects. Additionally, the platform construction approach, which prioritizes comprehensive service digitization and the 'Trinity' of the public, healthcare workers, and managers, serves as an effective means of promoting the development of Internet Hospitals. Such insights may prove invaluable in guiding the development of IH and facilitating the continued evolution of the Internet healthcare sector. ", doi="10.2196/54018", url="https://www.jmir.org/2024/1/e54018", url="http://www.ncbi.nlm.nih.gov/pubmed/39168813" } @Article{info:doi/10.2196/58683, author="Jackson, Michael Tim and Ward, Kanesha and Saad, Shannon and White, J. Sarah and Poudel, Shila and Raffan, Freya and Amanatidis, Sue and Bartyn, Jenna and Hutchings, Owen and Coiera, Enrico and Chan, Kevin and Lau, S. Annie Y.", title="Virtual Hospitals and Patient Experience: Protocol for a Mixed Methods Observational Study", journal="JMIR Res Protoc", year="2024", month="Oct", day="29", volume="13", pages="e58683", keywords="virtual care", keywords="patient experience", keywords="virtual hospital", keywords="mixed method", keywords="co-design", keywords="barriers", keywords="facilitators", keywords="virtual services", abstract="Background: Virtual care is increasingly incorporated within routine health care settings to improve patient experience and access to care. A patient's experience encompasses all the interactions an individual has with the health care system. This includes a greater emphasis on actively involving carers in the decisions and activities surrounding a patient's health care. Objective: This study aimed to investigate the variety of health care delivery challenges encountered in a virtual hospital and explore potential ways to improve the patient experience. Methods: Focusing on acute respiratory, this protocol outlines a mixed methods study exploring the patient experience of a virtual hospital in Australia, Royal Prince Alfred Virtual Hospital (rpavirtual). We will use an exploratory mixed methods approach comprising of secondary data analysis, observations, interviews, and co-design focus groups. Participants will include patients, their carers, and health care workers who are involved in the acute respiratory virtual hospital model of care. Together, the data will be triangulated to explore views and experiences of using this model of care, as well as co-designing recommendations for further improvement. Results: Findings from this study will identify current barriers and facilitators to implementing virtual care, such as work-as-done versus work-as-imagined, equity of care, the role of carers, and patient safety during virtual care. As of August 2024, a total of 25 participants have been interviewed. Conclusions: This protocol outlines a mixed methods case study on the acute respiratory model of care from Australia's first virtual hospital, rpavirtual. This study will collect the experiences of patients, carers, and health care workers to co-design a series of recommendations to improve the patient experience. International Registered Report Identifier (IRRID): DERR1-10.2196/58683 ", doi="10.2196/58683", url="https://www.researchprotocols.org/2024/1/e58683" } @Article{info:doi/10.2196/58136, author="Ackermann, Deonna and Hersch, Jolyn and Jordan, Dana and Clinton-Gray, Emily and Bracken, Karen and Janda, Monika and Turner, Robin and Bell, Katy", title="Participant Motivators and Expectations in the MEL-SELF Randomized Clinical Trial of Patient-Led Surveillance for Recurrent Melanoma: Content Analysis of Survey Responses", journal="JMIR Dermatol", year="2024", month="Oct", day="17", volume="7", pages="e58136", keywords="teledermatology", keywords="melanoma", keywords="randomized controlled trial", keywords="trial recruitment and retention", keywords="studies within a trial", keywords="SWATs", keywords="dermatology", keywords="cancer", keywords="early detection", keywords="dermatology clinical trials", keywords="clinical trials", keywords="mobile phone", abstract="Background: Limited data exist on the motivations and expectations of participants when enrolling in dermatology clinical trials, including melanoma early detection trials. Understanding participant motivators for research engagement has been identified as a prioritized area for trial methodology research. Objective: The study aimed to determine motivators of participation and expectations from trial involvement among patients enrolled in the MEL-SELF randomized clinical trial of patient-led surveillance for new or recurrent melanoma. Methods: The MEL-SELF trial is recruiting patients previously treated for localized melanoma, who own a smartphone, have a partner to assist with skin self-examination (SSE), and attend routinely scheduled follow-up at specialist and primary care skin clinics in Australia. We evaluated responses from the first 100 randomized participants to 2 open-ended questions about their motivations and expectations for participating in the trial, administered through the internet-based baseline questionnaire. A total of 3 coders independently coded the free-text responses and resolved discrepancies through consensus. Qualitative content analysis by an iterative process was used to group responses into themes. Responses from potential participants who were not randomized and the 404 participants randomized subsequently into the trial, were also checked for new themes. Coding and analysis were conducted in Microsoft Excel. Results: Out of the 100 survey participants, 98 (98\%) answered at least 1 of the 2 questions. Overall, responses across the motivation and expectation items indicated 3 broad themes: community benefit, perceived personal benefit, and trusting relationship with their health care provider. The most common motivators for participation were related to community benefit. These included progressing medical research, benefitting future melanoma patients who may have similar experiences, and broader altruistic sentiments such as ``helping others'' or ``giving back.'' The most common expectations from the trial related to personal benefit. These included perceived improved outcomes such as earlier diagnosis and treatment, access to additional care, and increased self-empowerment to take actions themselves that benefit their health. Patients expressed a desire to gain health-related knowledge and skills and were interested in the potential advantages of teledermatology. There were no new themes in responses from those who were not randomized or were randomized subsequent to the first 100. Conclusions: We report a tailorable, patient-focused approach to identify drivers of research engagement in clinical research. Clinical trials offer an opportunity to collate a substantial evidence base on determinants of research participation and to identify context-specific factors. Results from the MEL-SELF trial emphasized notable altruism, self-empowerment, and perceived advantages of teledermatology as specific motivators. These findings informed consent processes, recruitment, retention, response to trial tasks, and intervention adherence for the MEL-SELF host trial. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000176864.https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379527\& ", doi="10.2196/58136", url="https://derma.jmir.org/2024/1/e58136" } @Article{info:doi/10.2196/54754, author="Molander, Olof and Berman, H. Anne and Jakobson, Miriam and Gajecki, Mikael and H{\"a}llstr{\"o}m, Hanna and Ramner{\"o}, Jonas and Bjureberg, Johan and Carlbring, Per and Lindner, Philip", title="Introducing and Evaluating the Effectiveness of Online Cognitive Behavior Therapy for Gambling Disorder in Routine Addiction Care: Comparative Cohort Study", journal="J Med Internet Res", year="2024", month="Sep", day="18", volume="26", pages="e54754", keywords="gambling disorder", keywords="internet-delivered cognitive behavioral therapy", keywords="routine addiction care", keywords="registry study", keywords="gambling", keywords="addiction", keywords="health care setting", keywords="iCBT", keywords="Sweden", keywords="feasibility", keywords="clinic", keywords="hospital", keywords="psychological treatment", keywords="digital intervention", keywords="addictive disorder", keywords="eHealth", keywords="digital care", keywords="survival analysis", keywords="comorbidity", abstract="Background: Several treatment-related challenges exist for gambling disorder, in particular at-scale dissemination in health care settings. Objective: This study describes the introduction of a newly developed internet-delivered cognitive behavioral therapy (iCBT) program for gambling disorder (GD), provided with therapist support in routine addiction care, in a nationally recruited sample in Sweden. The study details the introduction of the iCBT program, evaluates its effectiveness and acceptability, and compares registry outcomes among iCBT patients with other patients with GD at the clinic who received face-to-face psychological treatment as usual. Methods: The study site was the Stockholm Addiction eClinic, which offers digital interventions for addictive disorders in routine care. The iCBT program was introduced nationally for treatment-seeking patients through the Swedish eHealth platform. After approximately 2 years of routine treatment provision, we conducted a registry study, including ordinary patients in routine digital care (n=218), and a reference sample receiving face-to-face psychological treatment for GD (n=216). Results: A statistically significant reduction in the Gambling Symptom Assessment Scale scores during the treatment was observed (B=--1.33, SE=0.17, P<.001), corresponding to a large within-group Cohen d effect size of d=1.39. The iCBT program was rated high for satisfaction. A registry-based survival analysis, controlling for psychiatric comorbidity, showed that patients receiving iCBT exhibited posttreatment outcomes (re-engagement in outpatient addiction care, receiving new psychiatric prescriptions, enrollment in psychiatric inpatient care, and care events indicative of contact with social services) similar to comparable patients who underwent face-to-face treatment-as-usual. Conclusions: A lack of randomized allocation notwithstanding, the iCBT program for GD evaluated in this study was well-received by patients in routine addiction care, was associated with the expected symptom decrease during treatment, and appears to result in posttreatment registry outcomes similar to face-to-face treatment. Future studies on treatment mechanisms and moderators are warranted. International Registered Report Identifier (IRRID): RR2-10.1186/s40814-020-00647-5 ", doi="10.2196/54754", url="https://www.jmir.org/2024/1/e54754" } @Article{info:doi/10.2196/47882, author="Copland, R. Rachel and Hanke, Sten and Rogers, Amy and Mpaltadoros, Lampros and Lazarou, Ioulietta and Zeltsi, Alexandra and Nikolopoulos, Spiros and MacDonald, M. Thomas and Mackenzie, S. Isla", title="The Digital Platform and Its Emerging Role in Decentralized Clinical Trials", journal="J Med Internet Res", year="2024", month="Sep", day="3", volume="26", pages="e47882", keywords="decentralized clinical trials", keywords="digital platform", keywords="digitalization", keywords="clinical trials", keywords="mobile phone", doi="10.2196/47882", url="https://www.jmir.org/2024/1/e47882" } @Article{info:doi/10.2196/57827, author="Goodday, M. Sarah and Karlin, Emma and Brooks, Alexa and Chapman, Carol and Harry, Christiana and Lugo, Nelly and Peabody, Shannon and Rangwala, Shazia and Swanson, Ella and Tempero, Jonell and Yang, Robin and Karlin, R. Daniel and Rabinowicz, Ron and Malkin, David and Travis, Simon and Walsh, Alissa and Hirten, P. Robert and Sands, E. Bruce and Bettegowda, Chetan and Holdhoff, Matthias and Wollett, Jessica and Szajna, Kelly and Dirmeyer, Kallan and Dodd, Anna and Hutchinson, Shawn and Ramotar, Stephanie and Grant, C. Robert and Boch, Adrien and Wildman, Mackenzie and Friend, H. Stephen", title="Value of Engagement in Digital Health Technology Research: Evidence Across 6 Unique Cohort Studies", journal="J Med Internet Res", year="2024", month="Sep", day="3", volume="26", pages="e57827", keywords="wearables", keywords="wearable", keywords="mHealth", keywords="mobile health", keywords="app", keywords="apps", keywords="application", keywords="applications", keywords="engagement", keywords="adherence", keywords="retention", keywords="participatory medicine", keywords="participatory", keywords="DHT", keywords="digital health technology", keywords="DHTs", keywords="digital health technologies", keywords="digital health", keywords="mobile phone", abstract="Background: Wearable digital health technologies and mobile apps (personal digital health technologies [DHTs]) hold great promise for transforming health research and care. However, engagement in personal DHT research is poor. Objective: The objective of this paper is to describe how participant engagement techniques and different study designs affect participant adherence, retention, and overall engagement in research involving personal DHTs. Methods: Quantitative and qualitative analysis of engagement factors are reported across 6 unique personal DHT research studies that adopted aspects of a participant-centric design. Study populations included (1) frontline health care workers; (2) a conception, pregnant, and postpartum population; (3) individuals with Crohn disease; (4) individuals with pancreatic cancer; (5) individuals with central nervous system tumors; and (6) families with a Li-Fraumeni syndrome affected member. All included studies involved the use of a study smartphone app that collected both daily and intermittent passive and active tasks, as well as using multiple wearable devices including smartwatches, smart rings, and smart scales. All studies included a variety of participant-centric engagement strategies centered on working with participants as co-designers and regular check-in phone calls to provide support over study participation. Overall retention, probability of staying in the study, and median adherence to study activities are reported. Results: The median proportion of participants retained in the study across the 6 studies was 77.2\% (IQR 72.6\%-88\%). The probability of staying in the study stayed above 80\% for all studies during the first month of study participation and stayed above 50\% for the entire active study period across all studies. Median adherence to study activities varied by study population. Severely ill cancer populations and postpartum mothers showed the lowest adherence to personal DHT research tasks, largely the result of physical, mental, and situational barriers. Except for the cancer and postpartum populations, median adherences for the Oura smart ring, Garmin, and Apple smartwatches were over 80\% and 90\%, respectively. Median adherence to the scheduled check-in calls was high across all but one cohort (50\%, IQR 20\%-75\%: low-engagement cohort). Median adherence to study-related activities in this low-engagement cohort was lower than in all other included studies. Conclusions: Participant-centric engagement strategies aid in participant retention and maintain good adherence in some populations. Primary barriers to engagement were participant burden (task fatigue and inconvenience), physical, mental, and situational barriers (unable to complete tasks), and low perceived benefit (lack of understanding of the value of personal DHTs). More population-specific tailoring of personal DHT designs is needed so that these new tools can be perceived as personally valuable to the end user. ", doi="10.2196/57827", url="https://www.jmir.org/2024/1/e57827" } @Article{info:doi/10.2196/56332, author="Naimark, Jody and Tinetti, E. Mary and Delbanco, Tom and Dong, Zhiyong and Harcourt, Kendall and Esterson, Jessica and Charpentier, Peter and Walker, Jan", title="Leveraging an Electronic Health Record Patient Portal to Help Patients Formulate Their Health Care Goals: Mixed Methods Evaluation of Pilot Interventions", journal="JMIR Form Res", year="2024", month="Aug", day="29", volume="8", pages="e56332", keywords="electronic pre-visit questionnaire", keywords="patient portal", keywords="multimorbidity", keywords="care priorities", keywords="goal", keywords="goals", keywords="priority", keywords="priorities", keywords="care plan", keywords="care plans", keywords="questionnaire", keywords="questionnaires", keywords="previsit", keywords="pre-visit", keywords="portal", keywords="portals", keywords="electronic health record", keywords="EHR", keywords="records", keywords="record", keywords="engagement", keywords="experience", keywords="experiences", keywords="attitude", keywords="attitudes", keywords="opinion", keywords="perception", keywords="perceptions", keywords="perspective", keywords="perspectives", abstract="Background: Persons with multiple chronic conditions face complex medical regimens and clinicians may not focus on what matters most to these patients who vary widely in their health priorities. Patient Priorities Care is a facilitator-led process designed to identify patients' priorities and align decision-making and care, but the need for a facilitator has limited its widespread adoption. Objective: The aims of this study are to design and test mechanisms for patients to complete a self-directed process for identifying priorities and providing their priorities to clinicians. Methods: The study involved patients of at least 65 years of age at 2 family medicine practices with 5 physicians each. We first tested 2 versions of an interactive website and asked patients to bring their results to their visit. We then tested an Epic previsit questionnaire derived from the website's questions and included standard previsit materials. We completed postintervention phone interviews and an online survey with participating patients and collected informal feedback and conducted a focus group with participating physicians. Results: In the test of the first website version, 17.3\% (35/202) of invited patients went to the website, 11.4\% (23/202) completed all of the questions, 2.5\% (5/202) brought results to their visits, and the median session time was 43.0 (IQR 28.0) minutes. Patients expressed confusion about bringing results to the visit. After clarifying that issue in the second version, 15.1\% (32/212) of patients went to the website, 14.6\% (31/212) completed the questions, 1.9\% (4/212) brought results to the visit, and the median session time was 35.0 (IQR 35.0) minutes. In the test of the Epic questionnaire, 26.4\% (198/750) of patients completed the questionnaire before at least 1 visit, and the median completion time was 14.0 (IQR 23.0) minutes. The 8 main questions were answered 62.9\% (129/205) to 95.6\% (196/205) of the time. Patients who completed questionnaires were younger than those who did not (72.3 vs 76.1 years) and were more likely to complete at least 1 of their other assigned questionnaires (99.5\%, 197/198) than those who did not (10.3\%, 57/552). A total of 140 of 198 (70.7\%) patients responded to a survey, and 86 remembered completing the questionnaire; 78 (90.7\%) did not remember having difficulty answering the questions and 57 (68.7\%) agreed or somewhat agreed that it helped them and their clinicians to understand their priorities. Doctors noted that the sickest patients did not complete the questionnaire and that the discussion provided a good segue into end-of-life care. Conclusions: Embedding questionnaires assaying patient priorities into patient portals holds promise for expanding access to priorities-concordant care. ", doi="10.2196/56332", url="https://formative.jmir.org/2024/1/e56332" } @Article{info:doi/10.2196/56673, author="Teodorowski, Piotr and Jones, Elisa and Tahir, Naheed and Ahmed, Saiqa and Rodgers, E. Sarah and Frith, Lucy", title="Public Involvement and Engagement in Big Data Research: Scoping Review", journal="J Particip Med", year="2024", month="Aug", day="16", volume="16", pages="e56673", keywords="patient and public involvement", keywords="PPI", keywords="involvement", keywords="engagement", keywords="big data", keywords="data science", keywords="patient engagement", keywords="co-design", keywords="coproduction", abstract="Background: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research. Objective: This review aims to synthesize the evidence on public involvement and engagement in big data research. Methods: This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review. Results: A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research. Conclusions: This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research. International Registered Report Identifier (IRRID): RR2-https://doi.org/10.1136/bmjopen-2021-050167 ", doi="10.2196/56673", url="https://jopm.jmir.org/2024/1/e56673" } @Article{info:doi/10.2196/56487, author="Nikkhah, Janis and Steinbeck, Viktoria and Grobe, G. Thomas and Breitkreuz, Thorben and Pross, Christoph and Busse, Reinhard", title="Evaluating the Population-Based Usage and Benefit of Digitally Collected Patient-Reported Outcomes and Experiences in Patients With Chronic Diseases: The PROMchronic Study Protocol", journal="JMIR Res Protoc", year="2024", month="Aug", day="5", volume="13", pages="e56487", keywords="health care policy", keywords="PROM", keywords="PREM", keywords="PRO feedback", keywords="health behavior", keywords="chronic disease", keywords="asthma", keywords="COPD", keywords="diabetes", keywords="coronary artery disease", keywords="value-based health care", keywords="quality of care", keywords="artery disease", keywords="chronic", keywords="self-management", keywords="effectiveness", keywords="Germany", keywords="cohort study", keywords="pulmonary disease", keywords="utilization", abstract="Background: Chronic diseases are associated with a high disease burden. Under- and overprovision of care as well as quality variation between health care providers persists, while current quality indicators rarely capture the patients' perspective. Capturing patient-reported outcome measures (PROMs) as well as patient-reported experience measures (PREMs) is becoming more and more important to identify gaps in care provision, prioritize services most valuable to patients, and aid patients' self-management. Objective: This study aims to measure the potential benefits and effectiveness of using electronic patient-reported outcome measures (ePROMs) and electronic patient-reported experience measures in a structured and population-based manner to enhance health care for chronic disease patients in Germany. Methods: This prospective cohort study aims to evaluate the potential benefits of PROM usage in patients with chronic diseases. We evaluate whether (1) digitally collected PROMs and PREMs can be used for health system performance assessment by generating a representative response of chronically diseased individuals with asthma, chronic obstructive pulmonary disease, diabetes, and coronary artery disease across Germany, and (2) based on the PROMs and PREMs, low-value care can be identified. As patient-reported outcomes (PROs) are rarely presented back to patients, (3) this study also examines patients' reactions to their PROM scores in the form of digital PRO feedback. For these purposes, randomly selected patients from a nationwide German insurer are digitally surveyed with generic and disease-specific PROMs and PREMs, as well as additional questions on their health-related behavior, 4 times over 1 year. Individual PRO feedback is presented back to patients longitudinally and compared to a peer group after each survey period. Patient-reported data is linked with health insurance data. Response rates, changes in health and experience outcomes over time, self-reported changes in health behavior, and health care system usage will be analyzed. Results: The PROMchronic study explores the usage of PROMs in patients with chronic diseases. Data collection began in October 2023, after the initial invitation letter. All the 200,000 potential patients have been invited to participate in the study. Data have not yet been analyzed. Publication of the interim results is planned for the autumn of 2024, and the results are planned to be published in 2025. Conclusions: We aim to fill the research gap on the population-based usage of PROMs and PREMs in patients with chronic diseases and add to the current understanding of PROM data-sharing with patients. The study's results can thereby inform whether a health care system-wide approach to collecting PROMs and PREMs can be used to identify low-value care, assess quality variation within and across chronic conditions, and determine whether PRO feedback is helpful and associated with any changes in patients' health behaviors. Trial Registration: German Clinical Trials Register DRKS00031656; https://drks.de/search/en/trial/DRKS00031656 International Registered Report Identifier (IRRID): DERR1-10.2196/56487 ", doi="10.2196/56487", url="https://www.researchprotocols.org/2024/1/e56487", url="http://www.ncbi.nlm.nih.gov/pubmed/39102279" } @Article{info:doi/10.2196/49394, author="Salmi, Liz and Peereboom, Danielle and Dorr, A. David and Graham, R. Leilani and Wolff, L. Jennifer and DesRoches, M. Catherine", title="Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care", journal="J Med Internet Res", year="2024", month="Jun", day="27", volume="26", pages="e49394", keywords="patient portals", keywords="shared access", keywords="proxy access", keywords="portal delegates", keywords="caregivers", keywords="care partners", keywords="health IT", keywords="electronic health records", doi="10.2196/49394", url="https://www.jmir.org/2024/1/e49394" } @Article{info:doi/10.2196/49084, author="H{\"a}gglund, Maria and Kharko, Anna and B{\"a}rk{\aa}s, Annika and Blease, Charlotte and Cajander, {\AA}sa and DesRoches, Catherine and Fagerlund, Johansen Asbj{\o}rn and Hagstr{\"o}m, Josefin and Huvila, Isto and H{\"o}rhammer, Iiris and Kane, Bridget and Klein, O. Gunnar and Kristiansen, Eli and Moll, Jonas and Muli, Irene and Rexhepi, Hanife and Riggare, Sara and Ross, Peeter and Scandurra, Isabella and Simola, Saija and Soone, Hedvig and Wang, Bo and Ghorbanian Zolbin, Maedeh and {\AA}hlfeldt, Rose-Mharie and Kujala, Sari and Johansen, Alise Monika", title="A Nordic Perspective on Patient Online Record Access and the European Health Data Space", journal="J Med Internet Res", year="2024", month="Jun", day="27", volume="26", pages="e49084", keywords="patients' online record access", keywords="open notes", keywords="electronic health records", keywords="EHR", keywords="patient portals", keywords="European Health Data Space", keywords="digital health", keywords="health care", keywords="patient access", doi="10.2196/49084", url="https://www.jmir.org/2024/1/e49084", url="http://www.ncbi.nlm.nih.gov/pubmed/38935430" } @Article{info:doi/10.2196/50453, author="Szeto, D. Mindy and Hook Sobotka, Michelle and Woolhiser, Emily and Parmar, Pritika and Wu, Jieying and Alhanshali, Lina and Dellavalle, P. Robert", title="PatientsLikeMe and Online Patient Support Communities in Dermatology", journal="JMIR Dermatol", year="2024", month="Jun", day="26", volume="7", pages="e50453", keywords="PatientsLikeMe", keywords="PLM", keywords="online support communities", keywords="social media", keywords="forums", keywords="discussion boards", keywords="internet", keywords="misinformation", keywords="community engagement", keywords="representation", keywords="demographics", keywords="lived experience", keywords="atopic dermatitis", keywords="prevalence", doi="10.2196/50453", url="https://derma.jmir.org/2024/1/e50453" } @Article{info:doi/10.2196/56687, author="Wang, Ye and Shi, Changjing and Wang, Xinyun and Meng, Hua and Chen, Junqiang", title="The Relationship Between Static Characteristics of Physicians and Patient Consultation Volume in Internet Hospitals: Quantitative Analysis", journal="JMIR Form Res", year="2024", month="Jun", day="17", volume="8", pages="e56687", keywords="static characteristics of physicians", keywords="internet hospitals", keywords="telemedicine", keywords="statistical analysis", keywords="online consultation", keywords="web-based consultation", keywords="teleconsultation", keywords="physician", keywords="patient", abstract="Background: Internet medical treatment, also known as telemedicine, represents a paradigm shift in health care delivery. This contactless model allows patients to seek medical advice remotely, often before they physically visit a doctor's clinic. Herein, physicians are in a relatively passive position, as patients browse and choose their health care providers. Although a wealth of experience is undoubtedly a draw for many patients, it remains unclear which specific facets of a doctor's credentials and accomplishments patients prioritize during their selection process. Objective: Our primary aim is to delve deeper into the correlation between physicians' static characteristics---such as their qualifications, experiences, and profiles on the internet---and the number of patient visits they receive. We seek to achieve this by analyzing comprehensive internet hospital data from public hospitals. Furthermore, we aim to offer insights into how doctors can present themselves more effectively on web-based platforms, thereby attracting more patients and improving overall patient satisfaction. Methods: We retrospectively gathered web-based diagnosis and treatment data from the First Affiliated Hospital of Guangxi Medical University in 2023. These data underwent rigorous analysis, encompassing basic descriptive statistics, correlation analyses between key factors in doctors' internet-based introductions, and the number of patient consultation visits. Additionally, we conducted subgroup analyses to ascertain the independence of these vital factors. To further distill the essence from these data, we used nonnegative matrix factorization to identify crucial demographic characteristics that significantly impact patient choice. Results: The statistical results suggested that there were significant differences in the distribution of consultation volume (P<.001), and the correlation analysis results suggested that there was a strong correlation between the two groups of data ($\rho$=0.93; P<.001). There was a correlation between the richness of a profile and popularity (P<.001). Patients were more interested in physicians with advanced titles, doctoral degrees, social activities, and scientific achievements (P<.001) as well as other institutional visit experiences (P=.003). More prosperous social activities, scientific achievements, experiences of other institutional visits, and awards were more common among people with advanced professional titles. Doctoral degrees remained attractive to patients when data were limited to senior physicians (P<.001). Patients trusted the medical staff with advanced titles, social activities, scientific achievements, and doctoral degrees (P<.001). Conclusions: Patient preferences for choosing a health care provider differed significantly between free and paid consultations. Notably, patients tended to trust doctors with advanced professional titles more and were more likely to seek out those with doctoral qualifications over other professional ranks. Additionally, physicians who actively participated in social events and scientific endeavors often had an advantage in attracting new patients. Given these insights, doctors who invest in enhancing their personal and professional experiences within these domains are likely to see increased popularity and patient satisfaction. ", doi="10.2196/56687", url="https://formative.jmir.org/2024/1/e56687", url="http://www.ncbi.nlm.nih.gov/pubmed/38885498" } @Article{info:doi/10.2196/57146, author="Baillie Abidi, Catherine and Patten, San and Houle, A. Stephanie and Hoffer, Ken and Reeves, Kathryn and B{\'e}langer, St{\'e}phanie and Nazarov, Anthony and Wells, Samantha", title="Canadian Armed Forces Veterans' Perspectives on the Effects of Exposure to Children in Armed Conflict During Military Service: Protocol for a Qualitative Study", journal="JMIR Res Protoc", year="2024", month="Jun", day="14", volume="13", pages="e57146", keywords="moral injury", keywords="mental health", keywords="Canadian Armed Forces Veterans", keywords="children", keywords="deployments", keywords="conflicts", keywords="military culture", keywords="trauma-informed research", keywords="people-centered research", keywords="participatory action research", abstract="Background: The mental health of military personnel has garnered increased attention over the last few decades; however, the impacts of perpetuating, observing, or failing to prevent acts that transgress deeply held moral standards, referred to as moral injuries, are less understood, particularly in relation to encounters with children during deployment. This paper describes a multiphased research protocol that centers around the lived experiences of Canadian Armed Forces (CAF) Veterans to understand how encounters with children during military deployments impact the well-being and mental health of military personnel. Objective: This study has four objectives: (1) highlight the lived experiences of CAF Veterans who encountered children during military deployments; (2) improve understanding of the nature of experiences that military personnel faced that related to observing or engaging with children during military service; (3) improve understanding of the mental health impacts of encountering children during military service; and (4) use participatory action research (PAR) to develop recommendations for improving preparation, training, and support for military personnel deployed to contexts where encounters with children are likely. Methods: The research project has 2 main phases where phase 1 includes qualitative interviews with CAF Veterans who encountered children during military deployments and phase 2 uses PAR to actively engage Canadian Veterans with lived experiences of encountering children during military deployments, as well as health professionals and researchers to identify recommendations to better address the mental health effects of these encounters. Results: As of January 26, 2024, a total of 55 participants and research partners have participated in the 2 phases of the research project. A total of 16 CAF Veterans participated in phase 1 (qualitative interviews), and 39 CAF Veterans, health professionals, and researchers participated in phase 2 (PAR). The results for phase 1 have been finalized and are accepted for publication. Data collection and analysis are ongoing for phase 2. Conclusions: Prioritizing and valuing the experiences of CAF Veterans has deepened our understanding of the intricate nature and impacts of potentially morally injurious events involving children during military deployments. Together with health professionals and researchers, the PAR approach empowers CAF Veterans to articulate important recommendations for developing and improving training and mental health support. This support is crucial not only during the deployment cycle but also throughout the military career, helping lessen the effects of moral injury among military personnel. International Registered Report Identifier (IRRID): DERR1-10.2196/57146 ", doi="10.2196/57146", url="https://www.researchprotocols.org/2024/1/e57146", url="http://www.ncbi.nlm.nih.gov/pubmed/38874998" } @Article{info:doi/10.2196/56493, author="Philpot, M. Lindsey and Ramar, Priya and Roellinger, L. Daniel and Njeru, W. Jane and Ebbert, O. Jon", title="Individual-Level Digital Determinants of Health and Technology Acceptance of Patient Portals: Cross-Sectional Assessment", journal="JMIR Form Res", year="2024", month="Jun", day="10", volume="8", pages="e56493", keywords="electronic health records", keywords="digital determinants of health", keywords="patient portals", keywords="eHealth", keywords="digital health", keywords="technology acceptance model", keywords="digital health literacy", keywords="digital inclusion", keywords="mobile phone", abstract="Background: Digital determinants of health (DDoH), including access to technological tools and digital health literacy, function independently as barriers to health. Assessment for DDoH is not routine within most health care systems, although addressing DDoH could help mitigate differential health outcomes and the digital divide. Objective: This study aims to assess the role of individual-level DDoH factors on patient enrollment in and use of the patient portal. Methods: We developed a multimodal, cross-sectional survey and deployed it to 11,424 individuals based on their preferred mode and language documented within the electronic medical record. Based on the Technology Acceptance Model, enrollment in and intent to use the patient portal were the outcomes of interest. Perceived usefulness and ease of use were assessed to determine construct validity, and exploratory investigations included individual-level DDoH, including internet and device access, availability of technological support, medical complexity, individual relationship with the health care system, and digital health literacy. Counts (n) and proportions (\%) were used to describe response categories, and adjusted and unadjusted odds ratios are reported. Results: This study included 1850 respondents (11,424 invited, 16.2\% response rate), who were mostly female (1048/1850, 56.6\%) and White (1240/1850, 67\%), with an average age of 63 years. In the validation of the Technology Acceptance Model, measures of perceived ease of use (ie, using the patient portal will require a lot of mental effort; the patient portal will be very easy to use) and perceived usefulness (ie, the usefulness of the patient portal to send and receive messages with providers, schedule appointments, and refill medications) were positively associated with both enrollment in and intent to use the patient portal. Within adjusted models, perceived ease of use and perceived usefulness constructs, in addition to constructs of digital health literacy, knowing what health resources are available on the internet (adjusted odds ratio [aOR] 3.5, 95\% CI 1.8-6.6), portal ease of use (aOR 2.8, 95\% CI 1.6-5), and portal usefulness (aOR 2.4, 95\% CI 1.4-4.2) were significantly associated with patient portal enrollment. Other factors associated with patient portal enrollment and intent to use included being comfortable reading and speaking English, reported use of the internet to surf the web or to send or receive emails, home internet access, and access to technology devices (computer, tablet, smartphone, etc). Conclusions: Assessing for and addressing individual-level DDoH, including digital health literacy, access to digital tools and technologies, and support of the relational aspects between patients, social support systems, and health care providers, could help mitigate disparities in health. By focusing efforts to assess for and address individual-level DDoH, an opportunity exists to improve digitally driven health care delivery outcomes like access and structural outcomes like bias built within algorithms created with incomplete representation across communities. ", doi="10.2196/56493", url="https://formative.jmir.org/2024/1/e56493", url="http://www.ncbi.nlm.nih.gov/pubmed/38695754" } @Article{info:doi/10.2196/57965, author="Nielsen, Stecher Martine and Steinsbekk, Aslak and N{\o}st, Hatlen Torunn", title="Development of Recommendations for the Digital Sharing of Notes With Adolescents in Mental Health Care: Delphi Study", journal="JMIR Ment Health", year="2024", month="Jun", day="6", volume="11", pages="e57965", keywords="electronic health record", keywords="EHR", keywords="electronic health records", keywords="EHRs", keywords="electronic medical record", keywords="EMR", keywords="electronic medical records", keywords="EMRs", keywords="patient record", keywords="health record", keywords="health records", keywords="personal health record", keywords="PHR", keywords="online access to electronic health records", keywords="open notes", keywords="clinical notes", keywords="adolescent mental health care", keywords="adolescent mental health", keywords="child mental health", keywords="mental health", keywords="mental illness", keywords="mental illnesses", keywords="mental disorder", keywords="mental disorders", keywords="recommendations", keywords="Delphi study", keywords="digital mental health", keywords="e-health", keywords="eHealth", keywords="e--mental health", keywords="health care professionals", keywords="digital health care", abstract="Background: In many countries, health care professionals are legally obliged to share information from electronic health records with patients. However, concerns have been raised regarding the sharing of notes with adolescents in mental health care, and health care professionals have called for recommendations to guide this practice. Objective: The aim was to reach a consensus among authors of scientific papers on recommendations for health care professionals' digital sharing of notes with adolescents in mental health care and to investigate whether staff at child and adolescent specialist mental health care clinics agreed with the recommendations. Methods: A Delphi study was conducted with authors of scientific papers to reach a consensus on recommendations. The process of making the recommendations involved three steps. First, scientific papers meeting the eligibility criteria were identified through a PubMed search where the references were screened. Second, the results from the included papers were coded and transformed into recommendations in an iterative process. Third, the authors of the included papers were asked to provide feedback and consider their agreement with each of the suggested recommendations in two rounds. After the Delphi process, a cross-sectional study was conducted among staff at specialist child and adolescent mental health care clinics to assess whether they agreed with the recommendations that reached a consensus. Results: Of the 84 invited authors, 27 responded. A consensus was reached on 17 recommendations on areas related to digital sharing of notes with adolescents in mental health care. The recommendations considered how to introduce digital access to notes, write notes, and support health care professionals, and when to withhold notes. Of the 41 staff members at child and adolescent specialist mental health care clinics, 60\% or more agreed with the 17 recommendations. No consensus was reached regarding the age at which adolescents should receive digital access to their notes and the timing of digitally sharing notes with parents. Conclusions: A total of 17 recommendations related to key aspects of health care professionals' digital sharing of notes with adolescents in mental health care achieved consensus. Health care professionals can use these recommendations to guide their practice of sharing notes with adolescents in mental health care. However, the effects and experiences of following these recommendations should be tested in clinical practice. ", doi="10.2196/57965", url="https://mental.jmir.org/2024/1/e57965" } @Article{info:doi/10.2196/47620, author="Lu, Qianfeng and Schulz, Johannes Peter", title="Physician Perspectives on Internet-Informed Patients: Systematic Review", journal="J Med Internet Res", year="2024", month="Jun", day="6", volume="26", pages="e47620", keywords="internet-informed patients", keywords="physician-patient communication", keywords="health information--seeking", keywords="misinformation", keywords="digital health", abstract="Background: The internet has become a prevalent source of health information for patients. However, its accuracy and relevance are often questionable. While patients seek physicians' expertise in interpreting internet health information, physicians' perspectives on patients' information-seeking behavior are less explored. Objective: This review aims to understand physicians' perceptions of patients' internet health information-seeking behavior as well as their communication strategies and the challenges and needs they face with internet-informed patients. Methods: An initial search in PubMed, Scopus, CINAHL, Communication and Mass Media Complete, and PsycINFO was conducted to collect studies published from January 1990 to August 1, 2022. A subsequent search on December 24, 2023, targeted recent studies published after the initial search cutoff date. Two reviewers independently performed title, abstract, and full-text screening, adhering to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement guidelines. Thematic analysis was then used to identify key themes and systematically categorize evidence from both qualitative and quantitative studies under these themes. Results: A total of 22 qualifying articles were identified after the search and screening process. Physicians were found to hold diverse views on patients' internet searches, which can be viewed as a continuous spectrum of opinions ranging from positive to negative. While some physicians leaned distinctly toward either positive or negative perspectives, a significant number expressed more balanced views. These physicians recognized both the benefits, such as increased patient health knowledge and informed decision-making, and the potential harms, including misinformation and the triggering of negative emotions, such as patient anxiety or confusion, associated with patients' internet health information seeking. Two communicative strategies were identified: the participative and defensive approaches. While the former seeks to guide internet-informed patients to use internet information with physicians' expertise, the latter aims to discourage patients from using the internet to seek health information. Physicians' perceptions were linked to their strategies: those holding positive views tended to adopt a participative approach, while those with negative views favored a defensive strategy. Some physicians claimed to shift between the 2 approaches depending on their interaction with a certain patient. We also identified several challenges and needs of physicians in dealing with internet-informed patients, including the time pressure to address internet-informed patient demands, a lack of structured training, and being uninformed about trustworthy internet sites that can be recommended to internet-informed patients. Conclusions: This review highlights the diverse perceptions that physicians hold toward internet-informed patients, as well as the interplay between their perceptions, communication strategies, and their interactions with individual patients. Incorporating elements into the medical teaching curriculum that introduce physicians to reliable internet health resources for patient guidance, coupled with providing updates on technological advancements, could be instrumental in equipping physicians to more effectively manage internet-informed patients. Trial Registration: PROSPERO CRD42022356317; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=356317 ", doi="10.2196/47620", url="https://www.jmir.org/2024/1/e47620", url="http://www.ncbi.nlm.nih.gov/pubmed/38842920" } @Article{info:doi/10.2196/53098, author="Greeley, Brian and Chung, Seohyeon Sally and Graves, Lorraine and Song, Xiaowei", title="Combating Barriers to the Development of a Patient-Oriented Frailty Website", journal="JMIR Aging", year="2024", month="May", day="28", volume="7", pages="e53098", keywords="frailty", keywords="frailty website", keywords="patient-oriented assessment", keywords="community-dwelling older adults", keywords="internet security", keywords="privacy", keywords="barrier", keywords="barriers", keywords="development", keywords="implementation", keywords="patient-oriented", keywords="internet", keywords="virtual health resource", keywords="community dwelling", keywords="older adult", keywords="older adults", keywords="health care professional", keywords="caregiver", keywords="caregivers", keywords="technology", keywords="real-time", keywords="monitoring", keywords="aging", keywords="ageing", doi="10.2196/53098", url="https://aging.jmir.org/2024/1/e53098" } @Article{info:doi/10.2196/53071, author="Uwera, Thaoussi and Venkateswaran, Mahima and Bhutada, Kiran and Papadopoulou, Eleni and Rukundo, Enock and K Tumusiime, David and Fr{\o}en, Frederik J.", title="Electronic Immunization Registry in Rwanda: Qualitative Study of Health Worker Experiences", journal="JMIR Hum Factors", year="2024", month="May", day="28", volume="11", pages="e53071", keywords="childhood immunization", keywords="electronic immunization registry", keywords="digital health interventions", abstract="Background: Monitoring childhood immunization programs is essential for health systems. Despite the introduction of an electronic immunization registry called e-Tracker in Rwanda, challenges such as lacking population denominators persist, leading to implausible reports of coverage rates of more than 100\%. Objective: This study aimed to assess the extent to which the immunization e-Tracker responds to stakeholders' needs and identify key areas for improvement. Methods: In-depth interviews were conducted with all levels of e-Tracker users including immunization nurses, data managers, and supervisors from health facilities in 5 districts of Rwanda. We used an interview guide based on the constructs of the Human, Organization, and Technology--Fit (HOT-Fit) framework, and we analyzed and summarized our findings using the framework. Results: Immunization nurses reported using the e-Tracker as a secondary data entry tool in addition to paper-based forms, which resulted in considerable dissatisfaction among nurses. While users acknowledged the potential of a digital tool compared to paper-based systems, they also reported the need for improvement of functionalities to support their work, such as digital client appointment lists, lists of defaulters, search and register functions, automated monthly reports, and linkages to birth notifications and the national identity system. Conclusions: Reducing dual documentation for users can improve e-Tracker use and user satisfaction. Our findings can help identify additional digital health interventions to support and strengthen the health information system for the immunization program. ", doi="10.2196/53071", url="https://humanfactors.jmir.org/2024/1/e53071", url="http://www.ncbi.nlm.nih.gov/pubmed/38805254" } @Article{info:doi/10.2196/51977, author="Li, Xiancheng and Gill, Aneet and Panzarasa, Pietro and Bestwick, Jonathan and Schrag, Anette and Noyce, Alastair and De Simoni, Anna", title="Web Application to Enable Online Social Interactions in a Parkinson Disease Risk Cohort: Feasibility Study and Social Network Analysis", journal="JMIR Form Res", year="2024", month="May", day="24", volume="8", pages="e51977", keywords="pilot studies", keywords="network analysis", keywords="Parkinson disease", keywords="risk factors", keywords="risk", keywords="risk cohort", keywords="social interaction", keywords="development", keywords="neurodegenerative disease", keywords="neurodegenerative", keywords="United Kingdom", keywords="feasibility", keywords="design", keywords="pilot", keywords="engagement", keywords="users", keywords="online forum", keywords="online network", keywords="online", keywords="regression analysis", abstract="Background: There is evidence that social interaction has an inverse association with the development of neurodegenerative diseases. PREDICT-Parkinson Disease (PREDICT-PD) is an online UK cohort study that stratifies participants for risk of future Parkinson disease (PD). Objective: This study aims to explore the methodological approach and feasibility of assessing the digital social characteristics of people at risk of developing PD and their social capital within the PREDICT-PD platform, making hypotheses about the relationship between web-based social engagement and potential predictive risk indicators of PD. Methods: A web-based application was built to enable social interaction through the PREDICT-PD portal. Feedback from existing members of the cohort was sought and informed the design of the pilot. Dedicated staff used weekly engagement activities, consisting of PD-related research, facts, and queries, to stimulate discussion. Data were collected by the hosting platform. We examined the pattern of connections generated over time through the cumulative number of posts and replies and ego networks using social network analysis. We used network metrics to describe the bonding, bridging, and linking of social capital among participants on the platform. Relevant demographic data and Parkinson risk scores (expressed as an odd 1:x) were analyzed using descriptive statistics. Regression analysis was conducted to estimate the relationship between risk scores (after log transformation) and network measures. Results: Overall, 219 participants took part in a 4-month pilot forum embedded in the study website. In it, 200 people (n=80, 40\% male and n=113, 57\% female) connected in a large group, where most pairs of users could reach one another either directly or indirectly through other users. A total of 59\% (20/34) of discussions were spontaneously started by participants. Participation was asynchronous, with some individuals acting as ``brokers'' between groups of discussions. As more participants joined the forum and connected to one another through online posts, distinct groups of connected users started to emerge. This pilot showed that a forum application within the cohort web platform was feasible and acceptable and fostered digital social interaction. Matching participants' web-based social engagement with previously collected data at individual level in the PREDICT-PD study was feasible, showing potential for future analyses correlating online network characteristics with the risk of PD over time, as well as testing digital social engagement as an intervention to modify the risk of developing neurodegenerative diseases. Conclusions: The results from the pilot suggest that an online forum can serve as an intervention to enhance social connectedness and investigate whether patterns of online engagement can impact the risk of developing PD through long-term follow-up. This highlights the potential of leveraging online platforms to study the role of social capital in moderating PD risk and underscores the feasibility of such approaches in future research or interventions. ", doi="10.2196/51977", url="https://formative.jmir.org/2024/1/e51977", url="http://www.ncbi.nlm.nih.gov/pubmed/38788211" } @Article{info:doi/10.2196/45115, author="Schnoor, Kyma and Talboom-Kamp, A. Esther P. W. and Hajti{\'c}, Muamer and Chavannes, H. Niels and Versluis, Anke", title="Facilitators of and Barriers to the Use of a Digital Self-Management Service for Diagnostic Testing: Focus Group Study With Potential Users", journal="JMIR Hum Factors", year="2024", month="May", day="10", volume="11", pages="e45115", keywords="eHealth", keywords="usability", keywords="self-management", keywords="diagnostic test service", keywords="diagnostic", keywords="testing", keywords="test service", keywords="perspective", keywords="focus group", keywords="user need", keywords="user testing", keywords="implementation", keywords="qualitative", keywords="test result", keywords="laboratory test", keywords="laboratory result", abstract="Background: Health care lags in digital transformation, despite the potential of technology to improve the well-being of individuals. The COVID-19 pandemic has accelerated the uptake of technology in health care and increased individuals' willingness to perform self-management using technology. A web-based service, Directlab Online, provides consumers with direct digital access to diagnostic test packages, which can digitally support the self-management of health. Objective: This study aims to identify the facilitators, barriers, and needs of Directlab Online, a self-management service for web-based access to diagnostic testing. Methods: A qualitative method was used from a potential user's perspective. The needs and future needs for, facilitators of, and barriers to the use of Directlab Online were evaluated. Semistructured focus group meetings were conducted in 2022. Two focus groups were focused on sexually transmitted infection test packages and 2 were focused on prevention test packages. Data analysis was performed according to the principles of the Framework Method. The Consolidated Framework for Implementation Research was used to categorize the facilitators and barriers. Results: In total, 19 participants, with a mean age of 34.32 (SD 14.70) years, participated in the focus groups. Important barriers were a lack of privacy information, too much and difficult information, and a commercial appearance. Important facilitators were the right amount of information, the right kind of tests, and the involvement of a health care professional. The need for a service such as Directlab Online was to ensure its availability for users' health and to maintain their health. Conclusions: According to the participants, facilitators and barriers were comprehension of the information, the goal of the website, and the overall appearance of the service. Although the service was developed in cocreation with health care professionals and users, the needs did not align. The users preferred understandable and adequate, but not excessive, information. In addition, they preferred other types of tests to be available on the service. For future research, it would be beneficial to focus on cocreation between the involved medical professionals and users to develop, improve, and implement a service such as Directlab Online. ", doi="10.2196/45115", url="https://humanfactors.jmir.org/2024/1/e45115", url="http://www.ncbi.nlm.nih.gov/pubmed/38728071" } @Article{info:doi/10.2196/57155, author="Smith, A. Katharine and Hardy, Amy and Vinnikova, Anastasia and Blease, Charlotte and Milligan, Lea and Hidalgo-Mazzei, Diego and Lambe, Sin{\'e}ad and Marzano, Lisa and Uhlhaas, J. Peter and Ostinelli, G. Edoardo and Anmella, Gerard and Zangani, Caroline and Aronica, Rosario and Dwyer, Bridget and Torous, John and Cipriani, Andrea", title="Digital Mental Health for Schizophrenia and Other Severe Mental Illnesses: An International Consensus on Current Challenges and Potential Solutions", journal="JMIR Ment Health", year="2024", month="May", day="8", volume="11", pages="e57155", keywords="digital", keywords="mental health", keywords="severe mental illness", keywords="consensus", keywords="lived experience", keywords="ethics", keywords="user-centered design", keywords="patient and public involvement", keywords="mobile phone", abstract="Background: Digital approaches may be helpful in augmenting care to address unmet mental health needs, particularly for schizophrenia and severe mental illness (SMI). Objective: An international multidisciplinary group was convened to reach a consensus on the challenges and potential solutions regarding collecting data, delivering treatment, and the ethical challenges in digital mental health approaches for schizophrenia and SMI. Methods: The consensus development panel method was used, with an in-person meeting of 2 groups: the expert group and the panel. Membership was multidisciplinary including those with lived experience, with equal participation at all stages and coproduction of the consensus outputs and summary. Relevant literature was shared in advance of the meeting, and a systematic search of the recent literature on digital mental health interventions for schizophrenia and psychosis was completed to ensure that the panel was informed before the meeting with the expert group. Results: Four broad areas of challenge and proposed solutions were identified: (1) user involvement for real coproduction; (2) new approaches to methodology in digital mental health, including agreed standards, data sharing, measuring harms, prevention strategies, and mechanistic research; (3) regulation and funding issues; and (4) implementation in real-world settings (including multidisciplinary collaboration, training, augmenting existing service provision, and social and population-focused approaches). Examples are provided with more detail on human-centered research design, lived experience perspectives, and biomedical ethics in digital mental health approaches for SMI. Conclusions: The group agreed by consensus on a number of recommendations: (1) a new and improved approach to digital mental health research (with agreed reporting standards, data sharing, and shared protocols), (2) equal emphasis on social and population research as well as biological and psychological approaches, (3) meaningful collaborations across varied disciplines that have previously not worked closely together, (4) increased focus on the business model and product with planning and new funding structures across the whole development pathway, (5) increased focus and reporting on ethical issues and potential harms, and (6) organizational changes to allow for true communication and coproduction with those with lived experience of SMI. This study approach, combining an international expert meeting with patient and public involvement and engagement throughout the process, consensus methodology, discussion, and publication, is a helpful way to identify directions for future research and clinical implementation in rapidly evolving areas and can be combined with measurements of real-world clinical impact over time. Similar initiatives will be helpful in other areas of digital mental health and similarly fast-evolving fields to focus research and organizational change and effect improved real-world clinical implementation. ", doi="10.2196/57155", url="https://mental.jmir.org/2024/1/e57155", url="http://www.ncbi.nlm.nih.gov/pubmed/38717799" } @Article{info:doi/10.2196/54128, author="Roberts, Lynae R. and Cherry, D. Katelin and Mohan, P. Desh and Statler, Tiffany and Kirkendall, Eric and Moses, Adam and McCraw, Jennifer and Brown III, E. Andrew and Fofanova, Y. Tatiana and Gabbard, Jennifer", title="A Personalized and Interactive Web-Based Advance Care Planning Intervention for Older Adults (Koda Health): Pilot Feasibility Study", journal="JMIR Aging", year="2024", month="May", day="6", volume="7", pages="e54128", keywords="advance care planning", keywords="ACP", keywords="digital health tools", keywords="system usability", keywords="gerontology", keywords="geriatric", keywords="geriatrics", keywords="older adult", keywords="older adults", keywords="elder", keywords="elderly", keywords="older person", keywords="older people", keywords="ageing", keywords="aging", keywords="adoption", keywords="acceptance", keywords="usability", keywords="digital health", keywords="platform", keywords="website", keywords="websites", abstract="Background: Advance care planning (ACP) is a process that involves patients expressing their personal goals, values, and future medical care preferences. Digital applications may help facilitate this process, though their use in older adults has not been adequately studied. Objective: This pilot study aimed to evaluate the reach, adoption, and usability of Koda Health, a web-based patient-facing ACP platform, among older adults. Methods: Older adults (aged 50 years and older) who had an active Epic MyChart account at an academic health care system in North Carolina were recruited to participate. A total of 2850 electronic invitations were sent through MyChart accounts with an embedded hyperlink to the Koda platform. Participants who agreed to participate were asked to complete pre- and posttest surveys before and after navigating through the Koda Health platform. Primary outcomes were reach, adoption, and System Usability Scale (SUS) scores. Exploratory outcomes included ACP knowledge and readiness. Results: A total of 161 participants enrolled in the study and created an account on the platform (age: mean 63, SD 9.3 years), with 80\% (129/161) of these participants going on to complete all steps of the intervention, thereby generating an advance directive. Participants reported minimal difficulty in using the Koda platform, with an overall SUS score of 76.2. Additionally, knowledge of ACP (eg, mean increase from 3.2 to 4.2 on 5-point scale; P<.001) and readiness (eg, mean increase from 2.6 to 3.2 on readiness to discuss ACP with health care provider; P<.001) significantly increased from before to after the intervention. Conclusions: This study demonstrated that the Koda Health platform is feasible, had above-average usability, and improved ACP documentation of preferences in older adults. Our findings indicate that web-based health tools like Koda may help older individuals learn about and feel more comfortable with ACP while potentially facilitating greater engagement in care planning. ", doi="10.2196/54128", url="https://aging.jmir.org/2024/1/e54128" } @Article{info:doi/10.2196/49262, author="Larsen, Maria and Holde, Eirin Gro and Johnsen, Kolset Jan-Are", title="Investigating Patient Satisfaction Through Web-Based Reviews of Norwegian Dentists: Quantitative Study Using the Meaning Extraction Method", journal="J Particip Med", year="2024", month="May", day="3", volume="16", pages="e49262", keywords="internet use", keywords="Linguistic Inquiry and Word Count", keywords="LIWC", keywords="patient satisfaction", keywords="patient preference", keywords="challenging encounters", keywords="preventive dentistry", keywords="population surveillance", abstract="Background: Challenging encounters in health care professions, including in dentistry, are relatively common. Challenging encounters can be defined as stressful or emotional situations involving patients that could impact both treatment outcomes and patients' experiences. Through written web-based reviews, patients can share their experiences with health care providers, and these posts can be a useful source for investigating patient satisfaction and their experiences of challenging encounters. Objective: This study aims to identify dominant themes from patient-written, web-based reviews of dentists and investigate how these themes are related to patient satisfaction with dental treatment. Methods: The study data consisted of 11,764 reviews written by dental patients, which included 1- to 5-star ratings on overall satisfaction and free-text comments. The free-text comments were analyzed using Linguistic Inquiry and Word Count software, and the meaning extraction method was used to group words into thematic categories. These themes were used as variables in a multilevel logistic regression analysis to predict patient satisfaction. Results: Eight themes emerged from the analyses, of which 6 (75\%)---explanation (odds ratio [OR] 2.56, 95\% CI 2.16-3.04; P<.001), assurance (OR 3.61, 95\% CI 2.57-5.06; P<.001), performance assessment (OR 2.17, 95\% CI 1.84-2.55; P<.001), professional advice (OR 1.81, 95\% CI 1.55-2.13; P<.001), facilities (OR 1.78, 95\% CI 1.08-2.91; P=.02), and recommendation (OR 1.31, 95\% CI 1.12-1.53; P<.001)---increased the odds of high patient satisfaction. The remaining themes (2/8, 25\%)---consequences of treatment need (OR 0.24, 95\% CI 0.20-0.29; P<.001) and patient-centered care (OR 0.62, 95\% CI 0.52-0.74; P<.001)---reduced the odds of high patient satisfaction. Conclusions: The meaning extraction method is an interesting approach to explore patients' written accounts of encounters with dental health professionals. The experiences described by patients provide insight into key elements related to patient satisfaction that can be used in the education of dental health professionals and to improve the provision of dental health services. ", doi="10.2196/49262", url="https://jopm.jmir.org/2024/1/e49262", url="http://www.ncbi.nlm.nih.gov/pubmed/38700933" } @Article{info:doi/10.2196/47484, author="Benda, Natalie and Woode, Sydney and Ni{\~n}o de Rivera, Stephanie and Kalish, B. Robin and Riley, E. Laura and Hermann, Alison and Masterson Creber, Ruth and Costa Pimentel, Eric and Ancker, S. Jessica", title="Understanding Symptom Self-Monitoring Needs Among Postpartum Black Patients: Qualitative Interview Study", journal="J Med Internet Res", year="2024", month="Apr", day="26", volume="26", pages="e47484", keywords="maternal mortality", keywords="patient-reported outcomes", keywords="patient-reported outcome", keywords="health equity", keywords="qualitative research", keywords="mobile health", keywords="mHealth", keywords="qualitative", keywords="postpartum", keywords="postnatal", keywords="maternity", keywords="maternal", keywords="Black", keywords="women's health", keywords="ethnic", keywords="design need", keywords="mortality", keywords="death", keywords="decision support", keywords="information need", keywords="informational need", keywords="obstetric", keywords="obstetrics", keywords="mental health", keywords="mobile phone", abstract="Background: Pregnancy-related death is on the rise in the United States, and there are significant disparities in outcomes for Black patients. Most solutions that address pregnancy-related death are hospital based, which rely on patients recognizing symptoms and seeking care from a health system, an area where many Black patients have reported experiencing bias. There is a need for patient-centered solutions that support and encourage postpartum people to seek care for severe symptoms. Objective: We aimed to determine the design needs for a mobile health (mHealth) patient-reported outcomes and decision-support system to assist Black patients in assessing when to seek medical care for severe postpartum symptoms. These findings may also support different perinatal populations and minoritized groups in other clinical settings. Methods: We conducted semistructured interviews with 36 participants---15 (42\%) obstetric health professionals, 10 (28\%) mental health professionals, and 11 (31\%) postpartum Black patients. The interview questions included the following: current practices for symptom monitoring, barriers to and facilitators of effective monitoring, and design requirements for an mHealth system that supports monitoring for severe symptoms. Interviews were audio recorded and transcribed. We analyzed transcripts using directed content analysis and the constant comparative process. We adopted a thematic analysis approach, eliciting themes deductively using conceptual frameworks from health behavior and human information processing, while also allowing new themes to inductively arise from the data. Our team involved multiple coders to promote reliability through a consensus process. Results: Our findings revealed considerations related to relevant symptom inputs for postpartum support, the drivers that may affect symptom processing, and the design needs for symptom self-monitoring and patient decision-support interventions. First, participants viewed both somatic and psychological symptom inputs as important to capture. Second, self-perception; previous experience; sociocultural, financial, environmental, and health systems--level factors were all perceived to impact how patients processed, made decisions about, and acted upon their symptoms. Third, participants provided recommendations for system design that involved allowing for user control and freedom. They also stressed the importance of careful wording of decision-support messages, such that messages that recommend them to seek care convey urgency but do not provoke anxiety. Alternatively, messages that recommend they may not need care should make the patient feel heard and reassured. Conclusions: Future solutions for postpartum symptom monitoring should include both somatic and psychological symptoms, which may require combining existing measures to elicit symptoms in a nuanced manner. Solutions should allow for varied, safe interactions to suit individual needs. While mHealth or other apps may not be able to address all the social or financial needs of a person, they may at least provide information, so that patients can easily access other supportive resources. ", doi="10.2196/47484", url="https://www.jmir.org/2024/1/e47484", url="http://www.ncbi.nlm.nih.gov/pubmed/38669066" } @Article{info:doi/10.2196/53053, author="Elkefi, Safa and Asan, Onur", title="Validating the Effectiveness of the Patient-Centered Cancer Care Framework by Assessing the Impact of Work System Factors on Patient-Centered Care and Quality of Care: Interview Study With Newly Diagnosed Cancer Patients", journal="JMIR Hum Factors", year="2024", month="Apr", day="24", volume="11", pages="e53053", keywords="cancer", keywords="communication", keywords="trust", keywords="satisfaction", keywords="technology", keywords="workload", keywords="work system factors", abstract="Background: Patients with cancer who have recently been diagnosed have distinct requirements compared to cancer survivors. It is crucial to take into account their unique needs to ensure that they make informed decisions and are receptive to the care provided. Objective: This study suggested a framework titled Effectiveness of Patient-Centered Cancer Care that considers the needs of newly diagnosed patients with cancer and related work system factors. This study investigated how work system factors influence the perceptions of patient-centered care, quality of care, and associated outcomes among newly diagnosed patients with cancer. Patient-centered care is defined in terms of workload and communication considerations, whereas the quality of care is assessed through indicators such as trust in physicians, satisfaction with care, and perceptions of technology. Methods: This study used qualitative data collected through interviews with newly diagnosed patients with cancer (N=20) right after their first visits with their physicians. Thematic analysis was conducted to validate the 5 hypotheses of the framework, mapping the interactions among quality of care, patient-centered care, and work system factors. Results: We found that workload and patient-centered communication impact the quality of care and that the work system elements impact the patient-centeredness (workload and communication) and the quality of care (trust in physicians, satisfaction with care, and perception of technology use). Conclusions: Qualitatively validating the proposed Effectiveness of Patient-Centered Cancer Care framework, this study demonstrated its efficacy in elucidating the interplay of various factors. The framework holds promise for informing interventions geared toward enhancing patients' experiences during their initial visits after diagnosis. There is a pressing need for heightened attention to the organizational design, patient processes, and collaborative efforts among diverse stakeholders and providers to optimize the overall patient experience. ", doi="10.2196/53053", url="https://humanfactors.jmir.org/2024/1/e53053", url="http://www.ncbi.nlm.nih.gov/pubmed/38656776" } @Article{info:doi/10.2196/50092, author="Benjamins, Janine and de Vet, Emely and de Mortier, A. Chloe and Haveman-Nies, Annemien", title="The Effect of Using a Client-Accessible Health Record on Perceived Quality of Care: Interview Study Among Parents and Adolescents", journal="J Particip Med", year="2024", month="Apr", day="23", volume="16", pages="e50092", keywords="electronic health record", keywords="EHR", keywords="personal health record", keywords="child health services", keywords="child health", keywords="child welfare", keywords="adolescent health services", keywords="pediatrics", keywords="parent", keywords="care quality", keywords="perceived quality of care", keywords="patient experience", keywords="client perception", keywords="quality of care", keywords="adolescent", keywords="patient portal", keywords="client portal", keywords="qualitative study", abstract="Background: Patient-accessible electronic health records (PAEHRs) are assumed to enhance the quality of care, expressed in terms of safety, effectiveness, timeliness, person centeredness, efficiency, and equity. However, research on the impact of PAEHRs on the perceived quality of care among parents, children, and adolescents is largely lacking. In the Netherlands, a PAEHR (Iuvenelis) was developed for preventive child health care and youth care. Parents and adolescents had access to its full content, could manage appointments, ask questions, and comment on written reports. Objective: This study aims to assess whether and how using this PAEHR contributes to perceived quality of care from a client's perspective. Methods: We chose a qualitative design with a phenomenological approach to explore how parents and adolescents perceived the impact of using a PAEHR on quality of care. In-depth interviews that simultaneously included 1 to 3 people were conducted in 2021. In total, 20 participants were included in the study, representing parents and adolescents, both sexes, different educational levels, different native countries, and all participating municipalities. Within this group, 7 of 13 (54\%) parents had not previously been informed about the existence of a client portal. Their expectations of using the client portal, in relation to quality of care, were discussed after a demonstration of the portal. Results: Parents and adolescents perceived that using Iuvenelis contributed to the quality of care because they felt better informed and more involved in the care process than before the introduction of Iuvenelis. Moreover, they experienced more control over their health data, faster and simpler access to their health information, and found it easier to manage appointments or ask questions at their convenience. Parents from a migratory background, among whom 6 of 7 (86\%) had not previously been informed about the portal, expected that portal access would enhance their understanding of and control over their care processes. The parents expressed concerns about equity because parents from a migratory background might have less access to the service. Nevertheless, portal usability was regarded as high. Furthermore, both parents and adolescents saw room for improvement in the broader interdisciplinary use of Iuvenelis and the quality of reporting. Conclusions: Using Iuvenelis can contribute to the client-experienced quality of care, more specifically to perceived person centeredness, timeliness, safety, efficiency, and integration of care. However, some quality aspects, such as equity, still need addressing. In general, client information about the portal needs to be improved, specifically focusing on people in vulnerable circumstances, such as those from migratory backgrounds. In addition, to maximize the potential benefit of using Iuvenelis, stimulating a person-centered attitude among professionals is important. Considering the small number of adolescent participants (n=7), adding quantitative data from a structured survey could strengthen the available evidence. ", doi="10.2196/50092", url="https://jopm.jmir.org/2024/1/e50092", url="http://www.ncbi.nlm.nih.gov/pubmed/38652532" } @Article{info:doi/10.2196/50118, author="Laidsaar-Powell, Rebekah and Giunta, Sarah and Butow, Phyllis and Keast, Rachael and Koczwara, Bogda and Kay, Judy and Jefford, Michael and Turner, Sandra and Saunders, Christobel and Schofield, Penelope and Boyle, Frances and Yates, Patsy and White, Kate and Miller, Annie and Butt, Zoe and Bonnaudet, Melanie and Juraskova, Ilona", title="Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers", journal="JMIR Med Educ", year="2024", month="Apr", day="17", volume="10", pages="e50118", keywords="family carers", keywords="patient education", keywords="health professional education", keywords="web-based intervention", keywords="mobile phone", abstract="Background: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill?equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. Objective: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO?pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. Methods: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including ``think-aloud'' interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). Results: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small ``snackable'' sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. Conclusions: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care. ", doi="10.2196/50118", url="https://mededu.jmir.org/2024/1/e50118", url="http://www.ncbi.nlm.nih.gov/pubmed/38630531" } @Article{info:doi/10.2196/48793, author="Wahl, J. Kate and Brooks, Melissa and Trenaman, Logan and Desjardins-Lorimer, Kirsten and Bell, M. Carolyn and Chokmorova, Nazgul and Segall, Romy and Syring, Janelle and Williams, Aleyah and Li, C. Linda and Norman, V. Wendy and Munro, Sarah", title="User-Centered Development of a Patient Decision Aid for Choice of Early Abortion Method: Multi-Cycle Mixed Methods Study", journal="J Med Internet Res", year="2024", month="Apr", day="16", volume="26", pages="e48793", keywords="family planning", keywords="abortion", keywords="shared decision-making", keywords="patient decision aid", keywords="qualitative", keywords="evaluation", keywords="Canada", keywords="health equity", abstract="Background: People seeking abortion in early pregnancy have the choice between medication and procedural options for care. The choice is preference-sensitive---there is no clinically superior option and the choice depends on what matters most to the individual patient. Patient decision aids (PtDAs) are shared decision-making tools that support people in making informed, values-aligned health care choices. Objective: We aimed to develop and evaluate the usability of a web-based PtDA for the Canadian context, where abortion care is publicly funded and available without legal restriction. Methods: We used a systematic, user-centered design approach guided by principles of integrated knowledge translation. We first developed a prototype using available evidence for abortion seekers' decisional needs and the risks, benefits, and consequences of each option. We then refined the prototype through think-aloud interviews with participants at risk of unintended pregnancy (``patient'' participants). Interviews were audio-recorded and documented through field notes. Finally, we conducted a web-based survey of patients and health care professionals involved with abortion care, which included the System Usability Scale. We used content analysis to identify usability issues described in the field notes and open-ended survey questions, and descriptive statistics to summarize participant characteristics and close-ended survey responses. Results: A total of 61 individuals participated in this study. Further, 11 patients participated in think-aloud interviews. Overall, the response to the PtDA was positive; however, the content analysis identified issues related to the design, language, and information about the process and experience of obtaining abortion care. In response, we adapted the PtDA into an interactive website and revised it to include consistent and plain language, additional information (eg, pain experience narratives), and links to additional resources on how to find an abortion health care professional. In total, 25 patients and 25 health care professionals completed the survey. The mean System Usability Scale score met the threshold for good usability among both patient and health care professional participants. Most participants felt that the PtDA was user-friendly (patients: n=25, 100\%; health care professionals: n=22, 88\%), was not missing information (patients: n=21, 84\%; health care professionals: n=18, 72\%), and that it was appropriate for patients to complete the PtDA before a consultation (patients: n=23, 92\%; health care professionals: n=23, 92\%). Open-ended responses focused on improving usability by reducing the length of the PtDA and making the website more mobile-friendly. Conclusions: We systematically designed the PtDA to address an unmet need to support informed, values-aligned decision-making about the method of abortion. The design process responded to a need identified by potential users and addressed unique sensitivities related to reproductive health decision-making. ", doi="10.2196/48793", url="https://www.jmir.org/2024/1/e48793", url="http://www.ncbi.nlm.nih.gov/pubmed/38625731" } @Article{info:doi/10.2196/55080, author="Walkner, Tammy and Karr, W. Daniel and Murray, Sarah and Heeren, Amanda and Berry-Stoelzle, Maresi", title="Participation in Advance Care Planning Among Medically At-Risk Rural Veterans: Protocol for a Personalized Engagement Model", journal="JMIR Res Protoc", year="2024", month="Apr", day="12", volume="13", pages="e55080", keywords="advance care planning", keywords="chronic disease", keywords="end-of-life care", keywords="health care decision", keywords="medical decision-making", keywords="recruiting", keywords="shared medical decision-making", abstract="Background: Many of the challenges in advanced care planning (ACP) conversations are linked to the waxing and waning progress of serious illnesses. Conversations with patients about future medical care decisions by a surrogate decision maker have historically been left until late in the patient's disease trajectory. These conversations often happen at a time when the patient is already very ill. The challenge in effective early ACP and serious illness conversations is to create a situation where patients appreciate the link between current and future medical care. Setting the stage to make these conversations more accessible includes using telehealth to have conversations at the patient's place of choice. The personalization used includes addressing the current medical and social needs of the patient and ensuring that expressed needs are addressed as much as possible. Engaging patients in these conversations allows the documentation of patient preferences in the electronic health record (EHR), providing guidelines for future medical care. Objective: The objective of our telehealth serious illness care conversations program was to successfully recruit patients who lacked up-to-date documentation of ACP in their EHR. Once these patients were identified, we engaged in meaningful, structured conversations to address the veterans' current needs and concerns. We developed a recruitment protocol that increased the uptake of rural veterans' participation in serious illness care conversations and subsequent EHR documentation. Methods: The recruitment protocol outlined herein used administrative data to determine those patients who have not completed or updated formal ACP documentation in the EHR and who are at above-average risk for death in the next 3-5 years. The key features of the telehealth serious illness care conversations recruitment protocol involve tailoring the recruitment approach to address current patient concerns while emphasizing future medical decision-making. Results: As of September 2022, 196 veterans had completed this intervention. The recruitment method ensures that the timing of the intervention is patient driven, allowing for veterans to engage in ACP at a time and place convenient for them and their identified support persons. Conclusions: The recruitment protocol has been successful in actively involving patients in ACP conversations, leading to an uptick in completed formal documentation of ACP preferences within the EHR for this specific population. This documentation is then available to the medical team to guide future medical care. International Registered Report Identifier (IRRID): RR1-10.2196/55080 ", doi="10.2196/55080", url="https://www.researchprotocols.org/2024/1/e55080", url="http://www.ncbi.nlm.nih.gov/pubmed/38608267" } @Article{info:doi/10.2196/52625, author="von Kalckreuth, Niklas and Feufel, A. Markus", title="Influence of Disease-Related Stigma on Patients' Decisions to Upload Medical Reports to the German Electronic Health Record: Randomized Controlled Trial", journal="JMIR Hum Factors", year="2024", month="Apr", day="10", volume="11", pages="e52625", keywords="electronic health record", keywords="EHR", keywords="technology acceptance", keywords="upload behavior", keywords="health-related stigma", keywords="intention to use", keywords="intention-behavior gap", keywords="medical reports", keywords="stigma", keywords="Germany", keywords="patient decision", keywords="digital transformation", keywords="implementation", keywords="risk", keywords="decision", keywords="risk perception", keywords="social stigma", keywords="safety", abstract="Background: The rollout of the electronic health record (EHR) represents a central component of the digital transformation of the German health care system. Although the EHR promises more effective, safer, and faster treatment of patients from a systems perspective, the successful implementation of the EHR largely depends on the patient. In a recent survey, 3 out of 4 Germans stated that they intend to use the EHR, whereas other studies show that the intention to use a technology is not a reliable and sufficient predictor of actual use. Objective: Controlling for patients' intention to use the EHR, we investigated whether disease-specific risk perceptions related to the time course of the disease and disease-related stigma explain the additional variance in patients' decisions to upload medical reports to the EHR. Methods: In an online user study, 241 German participants were asked to interact with a randomly assigned medical report that varied systematically in terms of disease-related stigma (high vs low) and disease time course (acute vs chronic) and to decide whether to upload it to the EHR. Results: Disease-related stigma (odds ratio 0.154, P<.001) offset the generally positive relationship between intention to use and the upload decision (odds ratio 2.628, P<.001), whereas the disease time course showed no effect. Conclusions: Even if patients generally intend to use the EHR, risk perceptions such as those related to diseases associated with social stigma may deter people from uploading related medical reports to the EHR. To ensure the reliable use of this key technology in a digitalized health care system, transparent and easy-to-comprehend information about the safety standards of the EHR are warranted across the board, even for populations that are generally in favor of using the EHR. ", doi="10.2196/52625", url="https://humanfactors.jmir.org/2024/1/e52625", url="http://www.ncbi.nlm.nih.gov/pubmed/38598271" } @Article{info:doi/10.2196/51848, author="Yoon, Sungwon and Tan, Min Chao and Phang, Kie Jie and Liu, Xi Venice and Tan, Boon Wee and Kwan, Heng Yu and Low, Leng Lian", title="Exploring the Implementation of Shared Decision-Making Involving Health Coaches for Diabetes and Hypertension Self-Management: Qualitative Study", journal="JMIR Form Res", year="2024", month="Apr", day="4", volume="8", pages="e51848", keywords="decision-making", keywords="diabetes", keywords="health coach", keywords="health coaching", keywords="healthcare professional", keywords="hypertension", keywords="patient", keywords="patient-centered care", keywords="person-centered care", keywords="qualitative research", keywords="self-management", keywords="shared decision-making", abstract="Background: An emerging focus on person-centered care has prompted the need to understand how shared decision-making (SDM) and health coaching could support self-management of diabetes and hypertension. Objective: This study aims to explore preferences for the scope of involvement of health coaches and health care professionals (HCPs) in SDM and the factors that may influence optimal implementation of SDM from the perspectives of patients and HCPs. Methods: We conducted focus group discussions with 39 patients with diabetes and hypertension and 45 HCPs involved in their care. The main topics discussed included the roles of health coaches and HCPs in self-management, views toward health coaching and SDM, and factors that should be considered for optimal implementation of SDM that involves health coaches. All focus group discussions were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Participants agreed that the main responsibility of HCPs should be identifying the patient's stage of change and medication education, while health coaches should focus on lifestyle education, monitoring, and motivational conversation. The health coach was seen to be more effective in engaging patients in lifestyle education and designing goal management plans as health coaches have more time available to spend with patients. The importance of a health coach's personal attributes (eg, sufficient knowledge of both medical and psychosocial management of disease conditions) and credentials (eg, openness, patience, and empathy) was commonly emphasized. Participants viewed that addressing the following five elements would be necessary for the optimal implementation of SDM: (1) target population (newly diagnosed and less stable patients), (2) commitment of all stakeholders (discrepancy on targeted times and modality), (3) continuity of care (familiar faces), (4) philosophy of care (person-centered communication), and (5) faces of legitimacy (physician as the ultimate authority). Conclusions: The findings shed light on the appropriate roles of health coaches vis-{\`a}-vis HCPs in SDM as perceived by patients and HCPs. Findings from this study also contribute to the understanding of SDM on self-management strategies for patients with diabetes and hypertension and highlight potential opportunities for integrating health coaches into the routine care process. ", doi="10.2196/51848", url="https://formative.jmir.org/2024/1/e51848", url="http://www.ncbi.nlm.nih.gov/pubmed/38573763" } @Article{info:doi/10.2196/47017, author="Sun, Wan-Na and Kao, Chi-Yin", title="The Challenges in Using eHealth Decision Resources for Surrogate Decision-Making in the Intensive Care Unit", journal="J Med Internet Res", year="2024", month="Apr", day="1", volume="26", pages="e47017", keywords="decision-making", keywords="eHealth", keywords="intensive care unit", keywords="literacy", keywords="surrogate", keywords="mobile phone", doi="10.2196/47017", url="https://www.jmir.org/2024/1/e47017", url="http://www.ncbi.nlm.nih.gov/pubmed/38557504" } @Article{info:doi/10.2196/45754, author="Slade, Emily and Rennick-Egglestone, Stefan and Ng, Fiona and Kotera, Yasuhiro and Llewellyn-Beardsley, Joy and Newby, Chris and Glover, Tony and Keppens, Jeroen and Slade, Mike", title="The Implementation of Recommender Systems for Mental Health Recovery Narratives: Evaluation of Use and Performance", journal="JMIR Ment Health", year="2024", month="Mar", day="29", volume="11", pages="e45754", keywords="recommender system", keywords="mean absolute error", keywords="precision", keywords="intralist diversity", keywords="item space coverage", keywords="fairness across users", keywords="psychosis", keywords="Narrative Experiences Online trial", keywords="NEON trial", keywords="lived experience narrative", keywords="recovery story", abstract="Background: Recommender systems help narrow down a large range of items to a smaller, personalized set. NarraGive is a first-in-field hybrid recommender system for mental health recovery narratives, recommending narratives based on their content and narrator characteristics (using content-based filtering) and on narratives beneficially impacting other similar users (using collaborative filtering). NarraGive is integrated into the Narrative Experiences Online (NEON) intervention, a web application providing access to the NEON Collection of recovery narratives. Objective: This study aims to analyze the 3 recommender system algorithms used in NarraGive to inform future interventions using recommender systems for lived experience narratives. Methods: Using a recently published framework for evaluating recommender systems to structure the analysis, we compared the content-based filtering algorithm and collaborative filtering algorithms by evaluating the accuracy (how close the predicted ratings are to the true ratings), precision (the proportion of the recommended narratives that are relevant), diversity (how diverse the recommended narratives are), coverage (the proportion of all available narratives that can be recommended), and unfairness (whether the algorithms produce less accurate predictions for disadvantaged participants) across gender and ethnicity. We used data from all participants in 2 parallel-group, waitlist control clinical trials of the NEON intervention (NEON trial: N=739; NEON for other [eg, nonpsychosis] mental health problems [NEON-O] trial: N=1023). Both trials included people with self-reported mental health problems who had and had not used statutory mental health services. In addition, NEON trial participants had experienced self-reported psychosis in the previous 5 years. Our evaluation used a database of Likert-scale narrative ratings provided by trial participants in response to validated narrative feedback questions. Results: Participants from the NEON and NEON-O trials provided 2288 and 1896 narrative ratings, respectively. Each rated narrative had a median of 3 ratings and 2 ratings, respectively. For the NEON trial, the content-based filtering algorithm performed better for coverage; the collaborative filtering algorithms performed better for accuracy, diversity, and unfairness across both gender and ethnicity; and neither algorithm performed better for precision. For the NEON-O trial, the content-based filtering algorithm did not perform better on any metric; the collaborative filtering algorithms performed better on accuracy and unfairness across both gender and ethnicity; and neither algorithm performed better for precision, diversity, or coverage. Conclusions: Clinical population may be associated with recommender system performance. Recommender systems are susceptible to a wide range of undesirable biases. Approaches to mitigating these include providing enough initial data for the recommender system (to prevent overfitting), ensuring that items can be accessed outside the recommender system (to prevent a feedback loop between accessed items and recommended items), and encouraging participants to provide feedback on every narrative they interact with (to prevent participants from only providing feedback when they have strong opinions). ", doi="10.2196/45754", url="https://mental.jmir.org/2024/1/e45754", url="http://www.ncbi.nlm.nih.gov/pubmed/38551630" } @Article{info:doi/10.2196/49696, author="Jensen, H{\o}pfner Lili Worre and Rahbek, Ole and Lauritsen, Kildahl Rikke Emilie and Kold, S{\o}ren and Dinesen, Birthe", title="Patient Perspectives on Communication Pathways After Orthopedic Surgery and Discharge and Evaluation of Team-Based Digital Communication: Qualitative Exploratory Study", journal="JMIR Hum Factors", year="2024", month="Mar", day="29", volume="11", pages="e49696", keywords="digital communication", keywords="patient-provider communication", keywords="continuity of care", keywords="interdisciplinary communication", keywords="hospital discharge", keywords="orthopedic surgery", keywords="postoperative care", keywords="text messaging", keywords="mobile phone", abstract="Background: The transition from hospital to home after orthopedic surgery requires smooth communication and coordination between patients and their team of care to avoid fragmented care pathways. Digital communication is increasingly being used to facilitate easy and accessible asynchronous communication between patients and health care professionals across settings. A team-based approach to digital communication may provide optimized quality of care in the postoperative period following orthopedic surgery and hospital discharge. Objective: This study was divided into two phases that aimed to (1) explore the perspectives of patients undergoing orthopedic surgery on current communication pathways at a tertiary hospital in Denmark and (2) test and explore patients' experiences and use of team-based digital communication following hospital discharge (eDialogue). Methods: A triangulation of qualitative data collection techniques was applied: document analysis, participant observations (n=16 hours), semistructured interviews with patients before (n=31) and after (n=24) their access to eDialogue, and exploration of use data. Results: Findings show that patients experience difficult communication pathways after hospital discharge and a lack of information due to inadequate coordination of care. eDialogue was used by 84\% (26/31) of the patients, and they suggested that it provided a sense of security, coherence, and proximity in the aftercare rearranging communication pathways for the better. Specific drivers and barriers to use were identified, and these call for further exploration of eDialogue. Conclusions: In conclusion, patients evaluated eDialogue positively and suggested that it could support them after returning home following orthopedic surgery. ", doi="10.2196/49696", url="https://humanfactors.jmir.org/2024/1/e49696", url="http://www.ncbi.nlm.nih.gov/pubmed/38551641" } @Article{info:doi/10.2196/36441, author="Freeman, Eric and Patel, Darshilmukesh and Odeniyi, Folasade and Pasquinelli, Mary and Jain, Shikha", title="Where Do Oncology Patients Seek and Share Health Information? Survey Study", journal="J Med Internet Res", year="2024", month="Mar", day="25", volume="26", pages="e36441", keywords="oncology", keywords="social media", keywords="patient-physician relationship", keywords="patient-physician", keywords="patient-provider", keywords="cancer", keywords="information sharing", keywords="information seeking", keywords="information behavior", keywords="technology access", keywords="digital divide", doi="10.2196/36441", url="https://www.jmir.org/2024/1/e36441", url="http://www.ncbi.nlm.nih.gov/pubmed/38526546" } @Article{info:doi/10.2196/51236, author="Liu, W. Andrew and Brown, III, William and Madu, E. Ndubuisi and Maiorano, R. Ali and Bigazzi, Olivia and Medina, Eli and Sorric, Christopher and Hays, R. Steven and Odisho, Y. Anobel", title="Patient Engagement With and Perspectives on a Mobile Health Home Spirometry Intervention: Mixed Methods Study", journal="JMIR Mhealth Uhealth", year="2024", month="Mar", day="20", volume="12", pages="e51236", keywords="mobile health", keywords="mHealth", keywords="remote patient monitoring", keywords="interview", keywords="interviews", keywords="dropout", keywords="attrition", keywords="eHealth", keywords="methods", keywords="telemedicine", keywords="statistics", keywords="numerical data", keywords="patient-centered care", keywords="spirometry", keywords="lung transplant", keywords="lung", keywords="transplant", keywords="transplants", keywords="transplantation", keywords="organ", keywords="organs", keywords="engagement", keywords="monitor", keywords="monitoring", keywords="pulmonary", keywords="respiratory", keywords="lungs", keywords="experience", keywords="experiences", keywords="device", keywords="devices", keywords="complication", keywords="complications", abstract="Background: Patient engagement attrition in mobile health (mHealth) remote patient monitoring (RPM) programs decreases program benefits. Systemic disparities lead to inequities in RPM adoption and use. There is an urgent need to understand patients' experiences with RPM in the real world, especially for patients who have stopped using the programs, as addressing issues faced by patients can increase the value of mHealth for patients and subsequently decrease attrition. Objective: This study sought to understand patient engagement and experiences in an RPM mHealth intervention in lung transplant recipients. Methods: Between May 4, 2020, and November 1, 2022, a total of 601 lung transplant recipients were enrolled in an mHealth RPM intervention to monitor lung function. The predictors of patient engagement were evaluated using multivariable logistic and linear regression. Semistructured interviews were conducted with 6 of 39 patients who had engaged in the first month but stopped using the program, and common themes were identified. Results: Patients who underwent transplant more than 1 year before enrollment in the program had 84\% lower odds of engaging (odds ratio [OR] 0.16, 95\% CI 0.07-0.35), 82\% lower odds of submitting pulmonary function measurements (OR 0.18, 95\% CI 0.09-0.33), and 78\% lower odds of completing symptom checklists (OR 0.22, 95\% CI 0.10-0.43). Patients whose primary language was not English had 78\% lower odds of engaging compared to English speakers (OR 0.22, 95\% CI 0.07-0.67). Interviews revealed 4 prominent themes: challenges with devices, communication breakdowns, a desire for more personal interactions and specific feedback with the care team about their results, understanding the purpose of the chat, and understanding how their data are used. Conclusions: Care delivery and patient experiences with RPM in lung transplant mHealth can be improved and made more equitable by tailoring outreach and enhancements toward non-English speakers and patients with a longer time between transplant and enrollment. Attention to designing programs to provide personalization through supplementary provider contact, education, and information transparency may decrease attrition rates. ", doi="10.2196/51236", url="https://mhealth.jmir.org/2024/1/e51236", url="http://www.ncbi.nlm.nih.gov/pubmed/38506896" } @Article{info:doi/10.2196/49647, author="F{\"a}rber, Andri and Schwabe, Christiane and Stalder, H. Philipp and Dolata, Mateusz and Schwabe, Gerhard", title="Physicians' and Patients' Expectations From Digital Agents for Consultations: Interview Study Among Physicians and Patients", journal="JMIR Hum Factors", year="2024", month="Mar", day="18", volume="11", pages="e49647", keywords="adherence to treatment", keywords="digital agents", keywords="eHealth", keywords="electronic medical records", keywords="health literacy", keywords="mobile health", keywords="mHealth", keywords="mobile phone", abstract="Background: Physicians are currently overwhelmed by administrative tasks and spend very little time in consultations with patients, which hampers health literacy, shared decision-making, and treatment adherence. Objective: This study aims to examine whether digital agents constructed using fast-evolving generative artificial intelligence, such as ChatGPT, have the potential to improve consultations, adherence to treatment, and health literacy. We interviewed patients and physicians to obtain their opinions about 3 digital agents---a silent digital expert, a communicative digital expert, and a digital companion (DC). Methods: We conducted in-depth interviews with 25 patients and 22 physicians from a purposeful sample, with the patients having a wide age range and coming from different educational backgrounds and the physicians having different medical specialties. Transcripts of the interviews were deductively coded using MAXQDA (VERBI Software GmbH) and then summarized according to code and interview before being clustered for interpretation. Results: Statements from patients and physicians were categorized according to three consultation phases: (1) silent and communicative digital experts that are part of the consultation, (2) digital experts that hand over to a DC, and (3) DCs that support patients in the period between consultations. Overall, patients and physicians were open to these forms of digital support but had reservations about all 3 agents. Conclusions: Ultimately, we derived 9 requirements for designing digital agents to support consultations, treatment adherence, and health literacy based on the literature and our qualitative findings. ", doi="10.2196/49647", url="https://humanfactors.jmir.org/2024/1/e49647", url="http://www.ncbi.nlm.nih.gov/pubmed/38498022" } @Article{info:doi/10.2196/50242, author="Stults, D. Cheryl and Mazor, M. Kathleen and Cheung, Michael and Ruo, Bernice and Li, Martina and Walker, Amanda and Saphirak, Cassandra and Vaida, Florin and Singh, Sonal and Fisher, A. Kimberly and Rosen, Rebecca and Yood, Robert and Garber, Lawrence and Longhurst, Christopher and Kallenberg, Gene and Yu, Edward and Chan, Albert and Millen, Marlene and Tai-Seale, Ming", title="Patients' Perspectives on Plans Generated During Primary Care Visits and Self-Reported Adherence at 3 Months: Data From a Randomized Trial", journal="J Particip Med", year="2024", month="Mar", day="14", volume="16", pages="e50242", keywords="primary care", keywords="survey", keywords="patient adherence", keywords="adherence", keywords="self-reported", keywords="surveys", keywords="content analysis", keywords="RCT", keywords="randomized", keywords="controlled trial", keywords="controlled trials", keywords="plan", keywords="plans", keywords="willingness", keywords="experience", keywords="experiences", keywords="attitude", keywords="attitudes", keywords="opinion", keywords="perception", keywords="perceptions", keywords="perspective", keywords="perspectives", abstract="Background: Effective primary care necessitates follow-up actions by the patient beyond the visit. Prior research suggests room for improvement in patient adherence. Objective: This study sought to understand patients' views on their primary care visits, the plans generated therein, and their self-reported adherence after 3 months. Methods: As part of a large multisite cluster randomized pragmatic trial in 3 health care organizations, patients completed 2 surveys---the first within 7 days after the index primary care visit and another 3 months later. For this analysis of secondary outcomes, we combined the results across all study participants to understand patient adherence to care plans. We recorded patient characteristics and survey responses. Cross-tabulation and chi-square statistics were used to examine bivariate associations, adjusting for multiple comparisons when appropriate. We used multivariable logistic regression to assess how patients' intention to follow, agreement, and understanding of their plans impacted their plan adherence, allowing for differences in individual characteristics. Qualitative content analysis was conducted to characterize the patient's self-reported plans and reasons for adhering (or not) to the plan 3 months later. Results: Of 2555 patients, most selected the top box option (9=definitely agree) that they felt they had a clear plan (n=2011, 78\%), agreed with the plan (n=2049, 80\%), and intended to follow the plan (n=2108, 83\%) discussed with their provider at the primary care visit. The most common elements of the plans reported included reference to exercise (n=359, 14.1\%), testing (laboratory, imaging, etc; n=328, 12.8\%), diet (n=296, 11.6\%), and initiation or adjustment of medications; (n=284, 11.1\%). Patients who strongly agreed that they had a clear plan, agreed with the plan, and intended to follow the plan were all more likely to report plan completion 3 months later (P<.001) than those providing less positive ratings. Patients who reported plans related to following up with the primary care provider (P=.008) to initiate or adjust medications (P?.001) and to have a specialist visit were more likely to report that they had completely followed the plan (P=.003). Adjusting for demographic variables, patients who indicated intent to follow their plan were more likely to follow-through 3 months later (P<.001). Patients' reasons for completely following the plan were mainly that the plan was clear (n=1114, 69.5\%), consistent with what mattered (n=1060, 66.1\%), and they were determined to carry through with the plan (n=887, 53.3\%). The most common reasons for not following the plan were lack of time (n=217, 22.8\%), having decided to try a different approach (n=105, 11\%), and the COVID-19 pandemic impacted the plan (n=105, 11\%). Conclusions: Patients' initial assessment of their plan as clear, their agreement with the plan, and their initial willingness to follow the plan were all strongly related to their self-reported completion of the plan 3 months later. Patients whose plans involved lifestyle changes were less likely to report that they had ``completely'' followed their plan. Trial Registration: ClinicalTrials.gov NCT03385512; https://clinicaltrials.gov/study/NCT03385512 International Registered Report Identifier (IRRID): RR2-10.2196/30431 ", doi="10.2196/50242", url="https://jopm.jmir.org/2024/1/e50242", url="http://www.ncbi.nlm.nih.gov/pubmed/38483458" } @Article{info:doi/10.2196/46713, author="Han, Xi and Lin, Yongxi and Han, Wenting and Liao, Ke and Mei, Kefu", title="Effect of Negative Online Reviews and Physician Responses on Health Consumers' Choice: Experimental Study", journal="J Med Internet Res", year="2024", month="Mar", day="12", volume="26", pages="e46713", keywords="negative review", keywords="proportion", keywords="claim type", keywords="attribution theory", keywords="physician-rating websites", keywords="consumer", keywords="physician response", abstract="Background: The COVID-19 pandemic has highlighted the importance of online medical services. Although some researchers have investigated how numerical ratings affect consumer choice, limited studies have focused on the effect of negative reviews that most concern physicians. Objective: This study aimed to investigate how negative review features, including proportion (low/high), claim type (evaluative/factual), and physician response (absence/presence), influence consumers' physician evaluation process under conditions in which a physician's overall rating is high. Methods: Using a 2{\texttimes}2{\texttimes}2 between-subject decision-controlled experiment, this study examined participants' judgment on physicians with different textual reviews. Collected data were analyzed using the t test and partial least squares--structural equation modeling. Results: Negative reviews decreased consumers' physician selection intention. The negative review proportion ($\beta$=--0.371, P<.001) and claim type ($\beta$=--0.343, P<.001) had a greater effect on consumers' physician selection intention compared to the physician response ($\beta$=0.194, P<.001). A high negative review proportion, factual negative reviews, and the absence of a physician response significantly reduced consumers' physician selection intention compared to their counterparts. Consumers' locus attributions on the negative reviews affected their evaluation process. Physician attribution mediated the effects of review proportion ($\beta$=--0.150, P<.001), review claim type ($\beta$=--0.068, P=.01), and physician response ($\beta$=0.167, P<.001) on consumer choice. Reviewer attribution also mediated the effects of review proportion ($\beta$=--0.071, P<.001), review claim type ($\beta$=--0.025, P=.01), and physician response ($\beta$=0.096, P<.001) on consumer choice. The moderating effects of the physician response on the relationship between review proportion and physician attribution ($\beta$=--0.185, P<.001), review proportion and reviewer attribution ($\beta$=--0.110, P<.001), claim type and physician attribution ($\beta$=--0.123, P=.003), and claim type and reviewer attribution ($\beta$=--0.074, P=.04) were all significant. Conclusions: Negative review features and the physician response significantly influence consumer choice through the causal attribution to physicians and reviewers. Physician attribution has a greater effect on consumers' physician selection intention than reviewer attribution does. The presence of a physician response decreases the influence of negative reviews through direct and moderating effects. We propose some practical implications for physicians, health care providers, and online medical service platforms. ", doi="10.2196/46713", url="https://www.jmir.org/2024/1/e46713", url="http://www.ncbi.nlm.nih.gov/pubmed/38470465" } @Article{info:doi/10.2196/47685, author="Jiang, Yun and Hwang, Misun and Cho, Youmin and Friese, R. Christopher and Hawley, T. Sarah and Manojlovich, Milisa and Krauss, C. John and Gong, Yang", title="The Acceptance and Use of Digital Technologies for Self-Reporting Medication Safety Events After Care Transitions to Home in Patients With Cancer: Survey Study", journal="J Med Internet Res", year="2024", month="Mar", day="8", volume="26", pages="e47685", keywords="digital technology", keywords="patient safety", keywords="patient participation", keywords="patient-reported outcomes", keywords="drug-related side effects and adverse reactions", abstract="Background: Actively engaging patients with cancer and their families in monitoring and reporting medication safety events during care transitions is indispensable for achieving optimal patient safety outcomes. However, existing patient self-reporting systems often cannot address patients' various experiences and concerns regarding medication safety over time. In addition, these systems are usually not designed for patients' just-in-time reporting. There is a significant knowledge gap in understanding the nature, scope, and causes of medication safety events after patients' transition back home because of a lack of patient engagement in self-monitoring and reporting of safety events. The challenges for patients with cancer in adopting digital technologies and engaging in self-reporting medication safety events during transitions of care have not been fully understood. Objective: We aim to assess oncology patients' perceptions of medication and communication safety during care transitions and their willingness to use digital technologies for self-reporting medication safety events and to identify factors associated with their technology acceptance. Methods: A cross-sectional survey study was conducted with adult patients with breast, prostate, lung, or colorectal cancer (N=204) who had experienced care transitions from hospitals or clinics to home in the past 1 year. Surveys were conducted via phone, the internet, or email between December 2021 and August 2022. Participants' perceptions of medication and communication safety and perceived usefulness, ease of use, attitude toward use, and intention to use a technology system to report their medication safety events from home were assessed as outcomes. Potential personal, clinical, and psychosocial factors were analyzed for their associations with participants' technology acceptance through bivariate correlation analyses and multiple logistic regressions. Results: Participants reported strong perceptions of medication and communication safety, positively correlated with medication self-management ability and patient activation. Although most participants perceived a medication safety self-reporting system as useful (158/204, 77.5\%) and easy to use (157/204, 77\%), had a positive attitude toward use (162/204, 79.4\%), and were willing to use such a system (129/204, 63.2\%), their technology acceptance was associated with their activation levels (odds ratio [OR] 1.83, 95\% CI 1.12-2.98), their perceptions of communication safety (OR 1.64, 95\% CI 1.08-2.47), and whether they could receive feedback after self-reporting (OR 3.27, 95\% CI 1.37-7.78). Conclusions: In general, oncology patients were willing to use digital technologies to report their medication events after care transitions back home because of their high concerns regarding medication safety. As informed and activated patients are more likely to have the knowledge and capability to initiate and engage in self-reporting, developing a patient-centered reporting system to empower patients and their families and facilitate safety health communications will help oncology patients in addressing their medication safety concerns, meeting their care needs, and holding promise to improve the quality of cancer care. ", doi="10.2196/47685", url="https://www.jmir.org/2024/1/e47685", url="http://www.ncbi.nlm.nih.gov/pubmed/38457204" } @Article{info:doi/10.2196/48573, author="Bergers, HK Juno and Wessels-Wynia, Hester and Seute, Tatjana and Janssens, Astrid and van Delden, JM Johannes", title="Getting to Know Your Patient: Content Analysis of Patients' Answers to a Questionnaire for Promoting Person-Centered Care", journal="J Particip Med", year="2024", month="Mar", day="4", volume="16", pages="e48573", keywords="person-centered care", keywords="shared decision-making", keywords="patient engagement", keywords="positive health", abstract="Background: Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire (``We would like to know you'') consisting of 5 questions has previously been developed to help HCPs to get to know the patient with the help of patient and staff involvement. Objective: The purpose of this study was to provide insight into the content and aims of the questionnaire to understand its potential and usability. Methods: We conducted a qualitative, retrospective content analysis of patients' answers using NVivo Pro (QSR International). The questionnaire was used in the outpatient neuro-oncology department of a Dutch academic hospital. Results: Of 374 invited patients, 78 (20.9\%) completed the questionnaire. We selected a sample of 42 (54\%) of the 78 patients. Patients used a median of 16 (IQR 7-27) words per question, and most answers were easily interpretable. When asked about important activities, social activities, sports, or maintaining a normal life were most frequently mentioned. Patients wrote about fear of the disease, its possible influence on life, or fear of the future in general. Patients wanted HCPs to know about their care and communication preferences or shared personal information. They formulated expectations about effective treatment, communication, and the care process. Conclusions: The questionnaire seems usable because patients provide interpretable answers that take little time to read, which HCPs can use to personalize care. Our study shows the potential of the questionnaire to help deliver PCC. ", doi="10.2196/48573", url="https://jopm.jmir.org/2024/1/e48573", url="http://www.ncbi.nlm.nih.gov/pubmed/38437017" } @Article{info:doi/10.2196/49110, author="Milton, Alyssa and Ozols A?M, Ingrid and Cassidy, Tayla and Jordan, Dana and Brown, Ellie and Arnautovska, Urska and Cook, Jim and Phung, Darren and Lloyd-Evans, Brynmor and Johnson, Sonia and Hickie, Ian and Glozier, Nick", title="Co-Production of a Flexibly Delivered Relapse Prevention Tool to Support the Self-Management of Long-Term Mental Health Conditions: Co-Design and User Testing Study", journal="JMIR Form Res", year="2024", month="Feb", day="23", volume="8", pages="e49110", keywords="self-management", keywords="serious mental illness", keywords="self-care", keywords="digital health tools", keywords="blended interventions", keywords="peer support", keywords="mobile phone", abstract="Background: Supported self-management interventions, which assist individuals in actively understanding and managing their own health conditions, have a robust evidence base for chronic physical illnesses, such as diabetes, but have been underused for long-term mental health conditions. Objective: This study aims to co-design and user test a mental health supported self-management intervention, My Personal Recovery Plan (MyPREP), that could be flexibly delivered via digital and traditional paper-based mediums. Methods: This study adopted a participatory design, user testing, and rapid prototyping methodologies, guided by 2 frameworks: the 2021 Medical Research Council framework for complex interventions and an Australian co-production framework. Participants were aged ?18 years, self-identified as having a lived experience of using mental health services or working in a peer support role, and possessed English proficiency. The co-design and user testing processes involved a first round with 6 participants, focusing on adapting a self-management resource used in a large-scale randomized controlled trial in the United Kingdom, followed by a second round with 4 new participants for user testing the co-designed digital version. A final round for gathering qualitative feedback from 6 peer support workers was conducted. Data analysis involved transcription, coding, and thematic interpretation as well as the calculation of usability scores using the System Usability Scale. Results: The key themes identified during the co-design and user testing sessions were related to (1) the need for self-management tools to be flexible and well-integrated into mental health services, (2) the importance of language and how language preferences vary among individuals, (3) the need for self-management interventions to have the option of being supported when delivered in services, and (4) the potential of digitization to allow for a greater customization of self-management tools and the development of features based on individuals' unique preferences and needs. The MyPREP paper version received a total usability score of 71, indicating C+ or good usability, whereas the digital version received a total usability score of 85.63, indicating A or excellent usability. Conclusions: There are international calls for mental health services to promote a culture of self-management, with supported self-management interventions being routinely offered. The resulting co-designed prototype of the Australian version of the self-management intervention MyPREP provides an avenue for supporting self-management in practice in a flexible manner. Involving end users, such as consumers and peer workers, from the beginning is vital to address their need for personalized and customized interventions and their choice in how interventions are delivered. Further implementation-effectiveness piloting of MyPREP in real-world mental health service settings is a critical next step. ", doi="10.2196/49110", url="https://formative.jmir.org/2024/1/e49110", url="http://www.ncbi.nlm.nih.gov/pubmed/38393768" } @Article{info:doi/10.2196/48881, author="Funnell, L. Erin and Spadaro, Benedetta and Martin-Key, A. Nayra and Benacek, Jiri and Bahn, Sabine", title="Perception of Apps for Mental Health Assessment With Recommendations for Future Design: United Kingdom Semistructured Interview Study", journal="JMIR Form Res", year="2024", month="Feb", day="23", volume="8", pages="e48881", keywords="app design", keywords="digital health", keywords="eHealth", keywords="interviews", keywords="mental health", keywords="mHealth", keywords="mobile phone", abstract="Background: Mental health care provision in the United Kingdom is overwhelmed by a high demand for services. There are high rates of under-, over-, and misdiagnosis of common mental health disorders in primary care and delays in accessing secondary care. This negatively affects patient functioning and outcomes. Digital tools may offer a time-efficient avenue for the remote assessment and triage of mental health disorders that can be integrated directly into existing care pathways to support clinicians. However, despite the potential of digital tools in the field of mental health, there remain gaps in our understanding of how the intended user base, people with lived experiences of mental health concerns, perceive these technologies. Objective: This study explores the perspectives and attitudes of individuals with lived experiences of mental health concerns on mental health apps that are designed to support self-assessment and triage. Methods: A semistructured interview approach was used to explore the perspectives of the interviewees using 5 open-ended questions. Interviews were transcribed verbatim from audio data recordings. The average interview lasted 46 minutes (rounded to the nearest min; SD 12.93 min). A thematic analysis was conducted. Results: Overall, 16 individuals were interviewed in this study. The average age was 42.25 (SD 15.18) years, half of the interviewees identified as women (8/16, 50\%), and all were White (16/16, 100\%). The thematic analysis revealed six major themes: (1) availability and accessibility, (2) quality, (3) attitudes, (4) safety, (5) impact, and (6) functionality. Conclusions: Engaging in clear communication regarding data security and privacy policies, adopting a consent-driven approach to data sharing, and identifying gaps in the app marketplace to foster the inclusion of a range of mental health conditions and avoid oversaturation of apps for common mental health disorders (eg, depression and anxiety) were identified as priorities from interviewees' comments. Furthermore, reputation was identified as a driver of uptake and engagement, with endorsement from a respected source (ie, health care provider, academic institution) or direct recommendation from a trusted health care professional associated with increased interest and trust. Furthermore, there was an interest in the role that co-designed digital self-assessments could play in existing care pathways, particularly in terms of facilitating informed discussions with health care professionals during appointments and by signposting individuals to the most appropriate services. In addition, interviewees discussed the potential of mental health apps to provide waiting list support to individuals awaiting treatment by providing personalized psychoeducation, self-help tips, and sources of help. However, concerns regarding the quality of care being affected because of digital delivery have been reported; therefore, frequent monitoring of patient acceptability and care outcomes is warranted. In addition, communicating the rationale and benefits of digitizing services will likely be important for securing interest and uptake from health care service users. ", doi="10.2196/48881", url="https://formative.jmir.org/2024/1/e48881", url="http://www.ncbi.nlm.nih.gov/pubmed/38393760" } @Article{info:doi/10.2196/48182, author="Fran{\c{c}}ois, Julien and Audrain-Pontevia, Anne-Fran{\c{c}}oise and Boudhra{\^a}, Sana and Vial, St{\'e}phane", title="Assessing the Influence of Patient Empowerment Gained Through Mental Health Apps on Patient Trust in the Health Care Provider and Patient Compliance With the Recommended Treatment: Cross-sectional Study", journal="J Med Internet Res", year="2024", month="Feb", day="12", volume="26", pages="e48182", keywords="patient empowerment", keywords="patient compliance", keywords="patient trust", keywords="mental health app", keywords="mental health", abstract="Background: In chronic mental illness, noncompliance with treatment significantly worsens the illness course and outcomes for patients. Considering that nearly 1 billion people worldwide experience mental health issues, including 1 of 5 Canadians in any given year, finding tools to lower noncompliance in these populations is critical for health care systems. A promising avenue is apps that make mental health services more accessible to patients. However, little is known regarding the impact of the empowerment gained from mental health apps on patient compliance with recommended treatment. Objective: This study aimed to investigate the impact of patient empowerment gained through mental health apps on patient trust in the health care provider and patient compliance with the recommended treatment. Methods: A cross-sectional web-based survey was conducted in Canada. Eligible participants were Canadian adults diagnosed with chronic mental health disorders who were using at least one of the following apps: Dialogue, MindBeacon, Deprexis, Ginger, Talkspace, BetterHelp, MindStrong, Mindshift, Bloom, Headspace, and Calm. A total of 347 valid questionnaires were collected and analyzed using partial least-squares structural equation modeling. Trust in the health care provider and patient compliance were measured with multiple-item scales adapted from existing scales. Patient empowerment was conceived and measured as a higher-order construct encompassing the following 2 dimensions: patient process and patient outcome. All the items contributing to the constructs in the model were measured with 7-point Likert scales. The reliability and validity of the measurement model were assessed, and the path coefficients of the structural model were estimated. Results: The results clearly show that patient empowerment gained through mental health apps positively influenced patient trust in the health care provider ($\beta$=.306; P<.001). Patient trust in the health care provider had a positive effect on patient compliance ($\beta$=.725; P<.001). The direct relationship between patient empowerment and patient compliance was not significant ($\beta$=.061, P=.23). Interestingly, the data highlight that the effect of patient empowerment on patient compliance was fully mediated by trust in the health care provider ($\beta$=.222; P<.001). The results show that patient empowerment gained through the mental health app involves 2 dimensions: a process and an outcome. Conclusions: This study shows that for individuals living with mental health disorders, empowerment gained through mental health apps enhances trust in the health care provider. It reveals that patient empowerment impacts patient compliance but only through the full mediating effect of patient trust in the health care provider, indicating that patient trust is a critical variable to enhance patient compliance. Hence, our results confirm that health care systems could encourage the use of mental health apps to favor a climate that facilitates patients' trust in health care provider recommendations, possibly leading to better compliance with the recommended treatment. ", doi="10.2196/48182", url="https://www.jmir.org/2024/1/e48182", url="http://www.ncbi.nlm.nih.gov/pubmed/38345851" } @Article{info:doi/10.2196/53372, author="Bevens, William and Davenport, Rebekah and Neate, Sandra and Yu, Maggie and Jelinek, Pia and Jelinek, Alexander George and Reece, Jeanette", title="Web-Based Health Information Seeking by People Living With Multiple Sclerosis: Qualitative Investigation of the Multiple Sclerosis Online Course", journal="J Med Internet Res", year="2024", month="Feb", day="9", volume="26", pages="e53372", keywords="information-seeking behavior", keywords="self-management", keywords="lifestyle", keywords="digital health", abstract="Background: Digital technologies have afforded people living with multiple sclerosis (MS) access to telehealth consultations, diagnostic tools, and monitoring. Although health care professionals remain the most trusted source of information, the internet has emerged as a valuable resource for providing MS-related information, particularly during the COVID-19 pandemic. Notably, people living with MS are increasingly seeking educational content for a range of topics related to the self-management of MS; however, web-based information seeking remains largely underevaluated. To address this gap and ensure that web-based health-related information is accessible and engaging, this study used qualitative methods to analyze the reflections from participants of web-based educational programs for people living with MS. Objective: This study aimed to explore the motivations, behaviors, and expectations of web-based health information seeking for people living with MS. Methods: We conducted semistructured interviews for 38 people living with MS 1 month after they completed the novel MS Online Course, which provided information on modifiable lifestyle-related risk factors for people living with MS. Of the 38 participants, 22 (58\%) completed the intervention course and 16 (42\%) completed the standard care course. Inductive thematic analysis was used within a qualitative paradigm, and 2 authors coded each interview separately and arrived at themes with consensus. Results: We identified 2 themes: motivation to learn and MS information on the web. The diagnosis of MS was described as a pivotal moment for precipitating web-based information seeking. People living with MS sought lifestyle-related information to facilitate self-management and increase control of their MS. Although social media sites and MS websites were considered useful for providing both support and information, discretion was needed to critically appraise information. Recognizable institutions were frequently accessed because of their trustworthiness. Conclusions: This study provided novel insights into the motivations of people living with MS for seeking web-based health information. Furthermore, their preferences for the content and format of the web-based information accessed and their experiences and reactions to this information were explored. These findings may guide educators, researchers, and clinicians involved in MS care to optimize the engagement and processing of web-based health information seeking by people living with MS. ", doi="10.2196/53372", url="https://www.jmir.org/2024/1/e53372", url="http://www.ncbi.nlm.nih.gov/pubmed/38335016" } @Article{info:doi/10.2196/47092, author="Hollestelle, J. Marieke and van der Graaf, Rieke and Sturkenboom, M. Miriam C. J. and Cunnington, Marianne and van Delden, M. Johannes J.", title="Building a Sustainable Learning Health Care System for Pregnant and Lactating People: Interview Study Among Data Access Providers", journal="JMIR Pediatr Parent", year="2024", month="Feb", day="8", volume="7", pages="e47092", keywords="ethics", keywords="learning health care systems", keywords="pregnancy", keywords="lactation", keywords="real-world data", keywords="governance", keywords="qualitative research", abstract="Background: In many areas of health care, learning health care systems (LHSs) are seen as promising ways to accelerate research and outcomes for patients by reusing health and research data. For example, considering pregnant and lactating people, for whom there is still a poor evidence base for medication safety and efficacy, an LHS presents an interesting way forward. Combining unique data sources across Europe in an LHS could help clarify how medications affect pregnancy outcomes and lactation exposures. In general, a remaining challenge of data-intensive health research, which is at the core of an LHS, has been obtaining meaningful access to data. These unique data sources, also called data access providers (DAPs), are both public and private organizations and are important stakeholders in the development of a sustainable and ethically responsible LHS. Sustainability is often discussed as a challenge in LHS development. Moreover, DAPs are increasingly expected to move beyond regulatory compliance and are seen as moral agents tasked with upholding ethical principles, such as transparency, trustworthiness, responsibility, and community engagement. Objective: This study aims to explore the views of people working for DAPs who participate in a public-private partnership to build a sustainable and ethically responsible LHS. Methods: Using a qualitative interview design, we interviewed 14 people involved in the Innovative Medicines Initiative (IMI) ConcePTION (Continuum of Evidence from Pregnancy Exposures, Reproductive Toxicology and Breastfeeding to Improve Outcomes Now) project, a public-private collaboration with the goal of building an LHS for pregnant and lactating people. The pseudonymized transcripts were analyzed thematically. Results: A total of 3 themes were identified: opportunities and responsibilities, conditions for participation and commitment, and challenges for a knowledge-generating ecosystem. The respondents generally regarded the collaboration as an opportunity for various reasons beyond the primary goal of generating knowledge about medication safety during pregnancy and lactation. Respondents had different interpretations of responsibility in the context of data-intensive research in a public-private network. Respondents explained that resources (financial and other), scientific output, motivation, agreements collaboration with the pharmaceutical industry, trust, and transparency are important conditions for participating in and committing to the ConcePTION LHS. Respondents also discussed the challenges of an LHS, including the limitations to (real-world) data analyses and governance procedures. Conclusions: Our respondents were motivated by diverse opportunities to contribute to an LHS for pregnant and lactating people, primarily centered on advancing knowledge on medication safety. Although a shared responsibility for enabling real-world data analyses is acknowledged, their focus remains on their work and contribution to the project rather than on safeguarding ethical data handling. The results of our interviews underline the importance of a transparent governance structure, emphasizing the trust between DAPs and the public for the success and sustainability of an LHS. ", doi="10.2196/47092", url="https://pediatrics.jmir.org/2024/1/e47092", url="http://www.ncbi.nlm.nih.gov/pubmed/38329780" } @Article{info:doi/10.2196/51126, author="Schwarz, Julian and Meier-Diedrich, Eva and Neumann, Katharina and Heinze, Martin and Eisenmann, Yvonne and Thoma, Samuel", title="Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study", journal="JMIR Ment Health", year="2024", month="Feb", day="5", volume="11", pages="e51126", keywords="open notes", keywords="patient-clinician relations", keywords="electronic health record", keywords="clinical notes", keywords="visit notes", keywords="patient participation", keywords="online record access", keywords="mental illness", keywords="patient portal", keywords="mental health", keywords="qualitative interview", keywords="patient education", abstract="Background: Over the past few years, online record access (ORA) has been established through secure patient portals in various countries, allowing patients to access their health data, including clinical notes (``open notes''). Previous research indicates that ORA in mental health, particularly among patients with severe mental illness (SMI), has been rarely offered. Little is known about the expectations and motivations of patients with SMI when reading what their clinicians share via ORA. Objective: The aim of this study is to explore the reasons why patients with SMI consider or reject ORA and whether sociodemographic characteristics may influence patient decisions. Methods: ORA was offered to randomly selected patients at 3 university outpatient clinics in Brandenburg, Germany, which exclusively treat patients with SMI. Within the framework of a mixed methods evaluation, qualitative interviews were conducted with patients who chose to participate in ORA and those who declined, aiming to explore the underlying reasons for their decisions. The interviews were transcribed and analyzed using thematic analysis. Sociodemographic characteristics of patients were examined using descriptive statistics to identify predictors of acceptance or rejection of ORA. Results: Out of 103 included patients, 58\% (n=60) wished to read their clinical notes. The reasons varied, ranging from a desire to engage more actively in their treatment to critically monitoring it and using the accessible data for third-party purposes. Conversely, 42\% (n=43) chose not to use ORA, voicing concerns about possibly harming the trustful relationship with their clinicians as well as potential personal distress or uncertainty arising from reading the notes. Practical barriers such as a lack of digital literacy or suspected difficult-to-understand medical language were also named as contributing factors. Correlation analysis revealed that the majority of patients with depressive disorder desired to read the clinical notes (P<.001), while individuals with psychotic disorders showed a higher tendency to decline ORA (P<.05). No significant group differences were observed for other patient groups or characteristics. Conclusions: The adoption of ORA is influenced by a wide range of motivational factors, while patients also present a similar variety of reasons for declining its use. The results emphasize the urgent need for knowledge and patient education regarding factors that may hinder the decision to use ORA, including its practical usage, its application possibilities, and concerns related to data privacy. Further research is needed to explore approaches for adequately preparing individuals with SMI to transition from their inherent interest to active engagement with ORA. Trial Registration: German Clinical Trial Register DRKS00030188; https://drks.de/search/en/trial/DRKS00030188 ", doi="10.2196/51126", url="https://mental.jmir.org/2024/1/e51126", url="http://www.ncbi.nlm.nih.gov/pubmed/38315523" } @Article{info:doi/10.2196/48008, author="Moll, Jonas and Myreteg, Gunilla and Rexhepi, Hanife", title="Experiences of Patients With Mental Health Issues Having Web-Based Access to Their Records: National Patient Survey", journal="JMIR Ment Health", year="2024", month="Feb", day="2", volume="11", pages="e48008", keywords="patient accessible electronic health record", keywords="patient portal", keywords="patient experiences", keywords="mental health", keywords="eHealth", keywords="national survey", keywords="digital mental health", keywords="digital health", abstract="Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5\%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean\_mental health 2.83, SD\_mental health 1.39; mean\_others 2.62, SD\_others 1.37; P=.002) or suspected inaccuracies (mean\_mental health 2.55, SD\_mental health 1.34; mean\_others 2.31, SD\_others 1.30; P=.001), blocking access for professionals in other specialties (mean\_mental health 3.43, SD\_mental health 1.46; mean\_others 3.04, SD\_others 1.42; P<.001), and checking which care professionals have accessed their record (mean\_mental health 4.28, SD\_mental health 1.14; mean\_others 4.05, SD\_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health issues (mean\_mental health 3.38, SD\_mental health 1.21; mean\_others 3.52, SD\_others 1.18; P=.02) believe that PAEHRs help them in shared decision-making compared to other patient groups. Conclusions: Patients with mental health issues who took part in the survey, as a group, express some minor differences in both the use of the PAEHR and their experiences regarding its usefulness, as compared to other patients, as a group. This patient group shows a slightly higher interest in 2 types of use: checking for accuracy of care in the record and blocking access to mental health notes for professionals from other parts of the health care system. Compared to other patient groups, these patients are less likely to experience that the PAEHR is a support in shared decision-making. The study indicates that the benefits of PAEHR on a general level are the same for this patient group as for other patients. The study does not support clinicians' worry about possible harm to this patient group. Further research is however needed. ", doi="10.2196/48008", url="https://mental.jmir.org/2024/1/e48008", url="http://www.ncbi.nlm.nih.gov/pubmed/38306158" } @Article{info:doi/10.2196/38064, author="Morsa, Maxime and Perrin, Am{\'e}lie and David, Val{\'e}rie and Rault, Gilles and Le Roux, Enora and Alberti, Corinne and Gagnayre, R{\'e}mi and Pougheon Bertrand, Dominique", title="Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research", journal="JMIR Form Res", year="2024", month="Jan", day="23", volume="8", pages="e38064", keywords="cystic fibrosis", keywords="mobile health", keywords="mHealth", keywords="patient education", keywords="chronic disease", keywords="empowerment", keywords="devices", keywords="patients", keywords="detection", keywords="treatment", keywords="respiratory", keywords="education", keywords="monitoring", keywords="care", abstract="Background: Early detection of pulmonary exacerbations (PEx) in patients with cystic fibrosis is important to quickly trigger treatment and reduce respiratory damage. An intervention was designed in the frame of the MucoExocet research study providing patients with cystic fibrosis with connected devices and educating them to detect and react to their early signs of PEx. Objective: This study aims to identify the contributions and conditions of home monitoring in relation to their care teams from the users' point of view to detect PEx early and treat it. This study focused on the patients' experiences as the first and main users of home monitoring. Methods: A qualitative study was conducted to explore patients' and professionals' experiences with the intervention. We interviewed patients who completed the 2-year study using semistructured guides and conducted focus groups with the care teams. All the interviews were recorded and transcribed verbatim. Their educational material was collected. A grounded analysis was conducted by 2 researchers. Results: A total of 20 patients completed the study. Three main categories emerged from the patients' verbatim transcripts and were also found in those of the professionals: (1) task technology fit, reflecting reliability, ease of use, accuracy of data, and support of the technology; (2) patient empowerment through technology, grouping patients' learnings, validation of their perception of exacerbation, assessment of treatment efficacy, awareness of healthy behaviors, and ability to react to PEx signs in relation to their care team; (3) use, reflecting a continuous or intermittent use, the perceived usefulness balanced with cumbersome measurements, routinization and personalization of the measurement process, and the way data are shared with the care team. Furthermore, 3 relationships were highlighted between the categories that reflect the necessary conditions for patient empowerment through the use of technology. Conclusions: We discuss a theorization of the process of patient empowerment through the use of connected devices and call for further research to verify or amend it in the context of other technologies, illnesses, and care organizations. Trial Registration: ClinicalTrials.gov NCT03304028; https://clinicaltrials.gov/ct2/show/results/NCT03304028 ", doi="10.2196/38064", url="https://formative.jmir.org/2024/1/e38064", url="http://www.ncbi.nlm.nih.gov/pubmed/38261372" } @Article{info:doi/10.2196/42850, author="Geng, Shuang and He, Yuqin and Duan, Liezhen and Yang, Chen and Wu, Xusheng and Liang, Gemin and Niu, Ben", title="The Association Between Linguistic Characteristics of Physicians' Communication and Their Economic Returns: Mixed Method Study", journal="J Med Internet Res", year="2024", month="Jan", day="11", volume="26", pages="e42850", keywords="web-based health care", keywords="instrumental communication", keywords="affective communication", keywords="linguistic features", keywords="economic returns", keywords="linguistic inquiry and word count", abstract="Background: Web-based health care has the potential to improve health care access and convenience for patients with limited mobility, but its success depends on active physician participation. The economic returns of internet-based health care initiatives are an important factor that can motivate physicians to continue their participation. Although several studies have examined the communication patterns and influences of web-based health consultations, the correlation between physicians' communication characteristics and their economic returns remains unexplored. Objective: This study aims to investigate how the linguistic features of 2 modes of physician-patient communication, instrumental and affective, determine the physician's economic returns, measured by the honorarium their patients agree to pay per consultation. We also examined the moderating effects of communication media (web-based text messages and voice messages) and the compounding effects of different communication features on economic returns. Methods: We collected 40,563 web-based consultations from 528 physicians across 4 disease specialties on a large, web-based health care platform in China. Communication features were extracted using linguistic inquiry and word count, and we used multivariable linear regression and K-means clustering to analyze the data. Results: We found that the use of cognitive processing language (ie, words related to insight, causation, tentativeness, and certainty) in instrumental communication and positive emotion--related words in affective communication were positively associated with the economic returns of physicians. However, the extensive use of discrepancy-related words could generate adverse effects. We also found that the use of voice messages for service delivery magnified the effects of cognitive processing language but did not moderate the effects of affective processing language. The highest economic returns were associated with consultations in which the physicians used few expressions related to negative emotion; used more terms associated with positive emotions; and later, used instrumental communication language. Conclusions: Our study provides empirical evidence about the relationship between physicians' communication characteristics and their economic returns. It contributes to a better understanding of patient-physician interactions from a professional-client perspective and has practical implications for physicians and web-based health care platform executives. ", doi="10.2196/42850", url="https://www.jmir.org/2024/1/e42850", url="http://www.ncbi.nlm.nih.gov/pubmed/38206657" } @Article{info:doi/10.2196/51200, author="Li, Shuning and Felix Gomez, Gomez Grace and Xu, Huiping and Rajapuri, Singh Anushri and Dixon, E. Brian and Thyvalikakath, Thankam", title="Dentists' Information Needs and Opinions on Accessing Patient Information via Health Information Exchange: Survey Study", journal="JMIR Form Res", year="2024", month="Jan", day="11", volume="8", pages="e51200", keywords="dentistry", keywords="medical history", keywords="integrated medical and dental records", keywords="health information exchange", keywords="medical record", keywords="dental record", keywords="dental", keywords="medical information", keywords="dental care", keywords="adverse drug effect", keywords="medication", keywords="allergies", keywords="cost", keywords="data safety", keywords="data accuracy", abstract="Background: The integration of medical and dental records is gaining significance over the past 2 decades. However, few studies have evaluated the opinions of practicing dentists on patient medical histories. Questions remain on dentists' information needs; their perception of the reliability of patient-reported medical history; satisfaction with the available information and the methods to gather this information; and their attitudes to other options, such as a health information exchange (HIE) network, to collect patient medical history. Objective: This study aims to determine Indiana dentists' information needs regarding patients' medical information and their opinions about accessing it via an HIE. Methods: We administered a web-based survey to Indiana Dental Association members to assess their current medical information-retrieval approaches, the information critical for dental care, and their willingness to access or share information via an HIE. We used descriptive statistics to summarize survey results and multivariable regression to examine the associations between survey respondents' characteristics and responses. Results: Of the 161 respondents (161/2148, 7.5\% response rate), 99.5\% (n=160) respondents considered patients' medical histories essential to confirm no contraindications, including allergies or the need for antibiotic prophylaxis during dental care and other adverse drug events. The critical information required were medical conditions or diagnosis, current medications, and allergies, which were gathered from patient reports. Furthermore, 88.2\% (n=142) of respondents considered patient-reported histories reliable; however, they experienced challenges obtaining information from patients and physicians. Additionally, 70.2\% (n=113) of respondents, especially those who currently access an HIE or electronic health record, were willing to use an HIE to access or share their patient's information, and 91.3\% (n=147) shared varying interests in such a service. However, usability, data accuracy, data safety, and cost are the driving factors in adopting an HIE. Conclusions: Patients' medical histories are essential for dentists to optimize dental care, especially for those with chronic conditions. In addition, most dentists are interested in using an HIE to access patient medical histories. The findings from this study can provide an alternative option for improving communications between dental and medical professionals and help the health information technology system or tool developers identify critical requirements for more user-friendly designs. ", doi="10.2196/51200", url="https://formative.jmir.org/2024/1/e51200", url="http://www.ncbi.nlm.nih.gov/pubmed/38206667" } @Article{info:doi/10.2196/43583, author="Bazzano, N. Alessandra and Patel, Tejal and Nauman, Elizabeth and Cernigliaro, Dana and Shi, Lizheng", title="Optimizing Telehealth for Diabetes Management in the Deep South of the United States: Qualitative Study of Barriers and Facilitators on the Patient and Clinician Journey", journal="J Med Internet Res", year="2024", month="Jan", day="1", volume="26", pages="e43583", keywords="telemedicine", keywords="diabetes mellitus", keywords="chronic disease", keywords="patient participation", keywords="delivery of health care", keywords="COVID-19", keywords="mobile phone", abstract="Background: The Deep South of the United States, and Louisiana in particular, bears a greater burden of obesity, diabetes, and heart disease compared with other regions in the United States. Throughout the COVID-19 pandemic, there has been a substantial increase in telehealth visits for diabetes management to protect the safety of patients. Although there have been significant advancements in telehealth and chronic disease management, little is known about patient and provider perspectives on the challenges and benefits of telehealth visits among people living with diabetes and providers who care for patients with diabetes in Louisiana. Objective: This study aimed to explore barriers, facilitators, challenges, and benefits to telehealth for patients with diabetes and health care providers as they transitioned from in-person to remote care during the early COVID-19 pandemic to understand potential optimization. Methods: A total of 24 semistructured qualitative interviews were conducted with 18 patients living with diabetes and 6 clinicians who served patients with diabetes to explore their experiences and perceptions of telehealth services for diabetes care. Approximately half of the participants identified as Black or African American, half as White, and 75\% as female. Interviews were recorded, transcribed, and coded by experienced qualitative researchers using inductive and deductive techniques. A narrative, descriptive approach to the patient and clinician journey framed the study, including the development of internal journey maps, and reflexive thematic analysis was applied to the transcripts, with special attention to barriers and facilitators. Results: In total, 5 themes illustrated barriers and facilitators for participants: convenience, safety, and comfort are the benefits of telehealth for patients and clinicians; yet telehealth and in-person visits are valued differently; the convenience of telehealth may have a downside; technology acts as a double-edged sword; and managing expectations and efficiency of the visit experience was an important factor. Individual experiences varied in relation to several factors, including comfort level and access to technology, health system protocols for providing telemedicine, and level of diabetes control among patients. Conclusions: Recommendations for optimization include providing support to help guide and inform patients about what to expect and how to prepare for telehealth visits as well as allowing clinicians to schedule telehealth and in-person visits during discrete blocks of time to improve efficiency. Further research should address how hybrid models of telehealth and in-person care may differentially impact health outcomes for patients with diabetes, particularly for people with multiple chronic conditions in settings where access to technology and connectivity is not optimal. ", doi="10.2196/43583", url="https://www.jmir.org/2024/1/e43583", url="http://www.ncbi.nlm.nih.gov/pubmed/37976468" } @Article{info:doi/10.2196/47840, author="Wang, Bo and Kristiansen, Eli and Fagerlund, Johansen Asbj{\o}rn and Zanaboni, Paolo and H{\"a}gglund, Maria and B{\"a}rk{\aa}s, Annika and Kujala, Sari and Cajander, {\AA}sa and Blease, Charlotte and Kharko, Anna and Huvila, Isto and Kane, Bridget and Johansen, Alise Monika", title="Users' Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care: Cross-Sectional Study", journal="J Med Internet Res", year="2023", month="Dec", day="25", volume="25", pages="e47840", keywords="patient empowerment", keywords="online access to electronic health records", keywords="patient-accessible electronic health record", keywords="patient access", keywords="user perspective", keywords="psychiatry", keywords="electronic health record", keywords="health data", keywords="patient portal", keywords="online records access", abstract="Background: Patient-accessible electronic health records (PAEHRs) hold promise for empowering patients, but their impact may vary between mental and somatic health care. Medical professionals and ethicists have expressed concerns about the potential challenges of PAEHRs for patients, especially those receiving mental health care. Objective: This study aims to investigate variations in the experiences of online access to electronic health records (EHRs) among persons receiving mental and somatic health care, as well as to understand how these experiences and perceptions vary among those receiving mental health care at different levels of point of care. Methods: Using Norwegian data from the NORDeHEALTH 2022 Patient Survey, we conducted a cross-sectional descriptive analysis of service use and perceptions of perceived mistakes, omissions, and offensive comments by mental and somatic health care respondents. Content analysis was used to analyze free-text responses to understand how respondents experienced the most serious errors in their EHR. Results: Among 9505 survey participants, we identified 2008 mental health care respondents and 7086 somatic health care respondents. A higher percentage of mental health care respondents (1385/2008, 68.97\%) reported that using PAEHR increased their trust in health care professionals compared with somatic health care respondents (4251/7086, 59.99\%). However, a significantly larger proportion (P<.001) of mental health care respondents (976/2008, 48.61\%) reported perceiving errors in their EHR compared with somatic health care respondents (1893/7086, 26.71\%). Mental health care respondents also reported significantly higher odds (P<.001) of identifying omissions (758/2008, 37.75\%) and offensive comments (729/2008, 36.3\%) in their EHR compared with the somatic health care group (1867/7086, 26.35\% and 826/7086, 11.66\%, respectively). Mental health care respondents in hospital inpatient settings were more likely to identify errors (398/588, 67.7\%; P<.001) and omissions (251/588, 42.7\%; P<.001) than those in outpatient care (errors: 422/837, 50.4\% and omissions: 336/837, 40.1\%; P<.001) and primary care (errors: 32/100, 32\% and omissions: 29/100, 29\%; P<.001). Hospital inpatients also reported feeling more offended (344/588, 58.5\%; P<.001) by certain content in their EHR compared with respondents in primary (21/100, 21\%) and outpatient care (287/837, 34.3\%) settings. Our qualitative findings showed that both mental and somatic health care respondents identified the most serious errors in their EHR in terms of medical history, communication, diagnosis, and medication. Conclusions: Most mental and somatic health care respondents showed a positive attitude toward PAEHRs. However, mental health care respondents, especially those with severe and chronic concerns, expressed a more critical attitude toward certain content in their EHR compared with somatic health care respondents. A PAEHR can provide valuable information and foster trust, but it requires careful attention to the use of clinical terminology to ensure accurate, nonjudgmental documentation, especially for persons belonging to health care groups with unique sensitivities. ", doi="10.2196/47840", url="https://www.jmir.org/2023/1/e47840", url="http://www.ncbi.nlm.nih.gov/pubmed/38145466" } @Article{info:doi/10.2196/50550, author="Fridriksdottir, Nanna and Ingadottir, Brynja and Skuladottir, Kristin and Zo{\"e}ga, Sigridur and Gunnarsdottir, Sigridur", title="Supportive Digital Health Service During Cancer Chemotherapy: Single-Arm Before-and-After Feasibility Study", journal="JMIR Form Res", year="2023", month="Dec", day="22", volume="7", pages="e50550", keywords="web portal for patients with cancer", keywords="supportive digital health service", keywords="symptom monitoring", keywords="self-management support", keywords="feasibility", keywords="usability", keywords="acceptability", keywords="patient education", keywords="health engagement", keywords="patient-reported outcomes", keywords="digital health service", keywords="patient portal", keywords="electronic health records", keywords="mobile phone", abstract="Background: Digital supportive cancer care is recommended to improve patient outcomes. A portal was designed and embedded within the electronic medical record and public health portal of Iceland, consisting of symptom and needs monitoring, educational material, and messaging. Objective: This study aims to assess (1) portal feasibility (adoption, engagement, usability, and acceptability), (2) potential predictors of usability and acceptability, and (3) the potential impact of the portal on patient-reported outcomes. Methods: This was a single-arm, before-and-after feasibility study at a university hospital among patients with cancer who were undergoing chemotherapy. Participation included filling out the Edmonton Symptom Assessment System--Revised (ESASr) weekly and the Distress Thermometer and Problem List (DT\&PL) 3 times; reading educational material and messaging; and completing study questionnaires. Clinical and portal engagement data were collected from medical records. Data from patients were collected electronically at baseline and 7 to 10 days after the third chemotherapy round. Usability was assessed using the System Usability Scale (score 0-100), and acceptability was assessed using a 35-item survey (score 1-5). Patient-reported outcome measures included ESASr and DT\&PL; a single-item scale for quality of life, family support, and quality of care; and multi-item scales for health literacy (Brief Health Literacy Screener), health engagement (Patient Health Engagement Scale), self-care self-efficacy (Self-Care Self-Efficacy scale), symptom interference (MD Anderson Symptom Inventory), knowledge expectations (Hospital Patients' Knowledge Expectations), and received knowledge (Hospital Patients' Received Knowledge). Health care professionals were interviewed regarding portal feasibility. Results: The portal adoption rate was 72\% (103/143), and the portal use rate was 76.7\% (79/103) over a mean 8.6 (SD 2.7) weeks. The study completion rate was 67\% (69/103). The combined completion rate of the ESASr and DT\&PL was 78.4\% (685/874). Patients received a mean 41 (SD 13) information leaflets; 33\% (26/79) initiated messaging, 73\% (58/79) received messages, and 85\% (67/79) received follow-up phone calls. The mean System Usability Scale score was 72.3 (SD 14.7), indicating good usability. Usability was predicted by age ($\beta$=?.45), ESASr engagement ($\beta$=.5), symptom interference ($\beta$=.4), and received knowledge ($\beta$=.41). The mean acceptability score, 3.97 (SD 0.5), was above average and predicted by age ($\beta$=?.31), ESASr engagement ($\beta$=.37), symptom interference ($\beta$=.60), self-care self-efficacy ($\beta$=.37), and received knowledge ($\beta$=.41). ESASr scores improved for total symptom distress (P=.003; Cohen d=0.36), physical symptoms (P=.01; Cohen d=0.31), and emotional symptoms (P=.01; Cohen d=0.31). Daily symptom interference increased (P=.03; Cohen d=0.28), quality of life improved (P=.03; Cohen d=0.27) and health engagement (P=.006; Cohen d=0.35) improved, while knowledge expectations decreased (P?.001; Cohen d=2.57). Health care professionals were positive toward the portal but called for clearer role delineation and follow-up. Conclusions: This study supports the feasibility of a support portal and the results indicate the possibility of improving patient outcomes, but further developments are warranted. ", doi="10.2196/50550", url="https://formative.jmir.org/2023/1/e50550", url="http://www.ncbi.nlm.nih.gov/pubmed/38015268" } @Article{info:doi/10.2196/47080, author="Louissaint, Jeremy and Gibbs, Jeffrey and Shenoy, Abhishek and Cohen-Mekelburg, Shirley and Lok, Anna and Tapper, Elliot", title="Patient Portal Use and Risk of Readmissions in Decompensated Cirrhosis: Retrospective Study", journal="JMIR Form Res", year="2023", month="Dec", day="19", volume="7", pages="e47080", keywords="cirrhosis", keywords="patient portal", keywords="readmissions", keywords="telehealth", keywords="telemedicine", abstract="Background: Patient portals are a common electronic medical record tool that allow for the asynchronous exchange of health information between patients and their health care teams. Patients can leverage patient portals to perform tasks such as viewing test results, reviewing clinical notes, and messaging their health care team. The impact of patient portal use on clinical outcomes in cirrhosis is unknown. Objective: In this study, we evaluated the relationship between patient portal use patterns and readmissions in cirrhosis. Methods: We identified 131 patients with decompensated cirrhosis with an index cirrhosis-related admission between May 1, 2018, and May 1, 2019. We then examined patient portal enrollment and use data during the 6-month period preceding the study period. Portal functions evaluated included sending a message, reading a message, and reading a test result. Use was categorized as active (sending a message) and passive (reading a message or test result) and was further stratified as no, moderate, or frequent use based on the frequency of portal function use compared to the mean. The primary outcomes were 90-day and overall readmissions, adjusted for age, model for end-stage liver disease--sodium, alcohol-related cirrhosis etiology, ascites, and hepatic encephalopathy. Portal functions assessed included sending a message, reading a message, and reading a result; the total number of times a portal function was performed was divided by the number of months the patient was enrolled in the patient portal during the 6-month period. Results: The study population was 50.4\% (66/131) female, with a mean age of 58 years. Enrollment in the patient portal was 63.4\% (83/131), and there was no significant difference in enrollment based on clinical or demographic characteristics. For the entire cohort, 14.5\% (19/131) and 22.1\% (29/131) of patients were moderate and frequent active users, respectively. Of those enrolled in the patient portal, 97.6\% (81/83) of patients were moderate or frequent passive users for both reading a message and reading a test result. Moderate active users had less 90-day readmissions (odds ratio 0.77, 95\% CI 0.60-1.00) and overall readmissions (subdistribution hazard ratio 0.42, 95\% CI 0.21-0.84), compared to nonactive users. There was no relationship between readmissions and passive use. Conclusions: Passive use of the patient portal is very high but is not associated with the risk of readmissions in people with decompensated cirrhosis. However, moderately active use of the patient portal is associated with a reduced risk of readmissions. Further work is needed to identify possible confounders and refine key use behaviors that may be protective with regard to the risk of readmission in this population. ", doi="10.2196/47080", url="https://formative.jmir.org/2023/1/e47080", url="http://www.ncbi.nlm.nih.gov/pubmed/38113099" } @Article{info:doi/10.2196/44762, author="Yamashiki, Noriyo and Kawabata, Kyoko and Murata, Miki and Ikeda, Shunichiro and Fujimaki, Takako and Suwa, Kanehiko and Seki, Toshihito and Aramaki, Eiji and Naganuma, Makoto", title="Narrowing the Patient--Physician Gap Based on Self-Reporting and Monthly Hepatologist Feedback for Patients With Alcohol-Related Liver Disease: Interventional Pilot Study Using a Journaling Smartphone App", journal="JMIR Form Res", year="2023", month="Dec", day="19", volume="7", pages="e44762", keywords="alcohol-related liver disease", keywords="alcohol use disorder", keywords="alcoholism", keywords="smartphone", keywords="mobile health", abstract="Background: Screening and intervention for alcohol use disorders (AUDs) are recommended to improve the prognosis of patients with alcohol-related liver disease (ALD). Most patients' smartphone app diaries record drinking behavior for self-monitoring. A smartphone app can be expected to also be helpful for physicians because it can provide rich patient information to hepatologists, leading to suitable feedback. We conducted this prospective pilot study to assess the use of a smartphone app as a journaling tool and as a self-report--based feedback source for patients with ALD. Objective: The aims of this study were assessment of whether journaling (self-report) and self-report--based feedback can help patients maintain abstinence and improve liver function data. Methods: This pilot study used a newly developed smartphone journaling app for patients, with input data that physicians can review. After patients with ALD were screened for harmful alcohol use, some were invited to use the smartphone journaling app for 8 weeks. Their self-reported alcohol intake, symptoms, and laboratory data were recorded at entry, week 4, and week 8. Biomarkers for alcohol use included gamma glutamyl transferase (GGT), percentage of carbohydrate-deficient transferrin to transferrin (\%CDT), and GGT-CDT (GGT-CDT= 0.8 {\texttimes} ln[GGT] + 1.3 {\texttimes} ln[\%CDT]). At each visit, their recorded data were reviewed by a hepatologist to evaluate changes in alcohol consumption and laboratory data. The relation between those outcomes and app usage was also investigated. Results: Of 14 patients agreeing to participate, 10 completed an 8-week follow-up, with diary input rates between 44\% and 100\% of the expected days. Of the 14 patients, 2 withdrew from clinical follow-up, and 2 additional patients never used the smartphone journaling app. Using the physician's view, a treating hepatologist gave feedback via comments to patients at each visit. Mean self-reported alcohol consumption dropped from baseline (100, SD 70 g) to week 4 (13, SD 25 g; P=.002) and remained lower at week 8 (13, SD 23 g; P=.007). During the study, 5 patients reported complete abstinence. No significant changes were found in mean GGT and mean \%CDT alone, but the mean GGT-CDT combination dropped significantly from entry (5.2, SD 1.2) to the week 4 visit (4.8, SD 1.1; P=.02) and at week 8 (4.8, SD 1.0; P=.01). During the study period, decreases in mean total bilirubin (3.0, SD 2.4 mg/dL to 2.4, SD 1.9 mg/dL; P=.01) and increases in mean serum albumin (3.0, SD 0.9 g/dL to 3.3, SD 0.8 g/dL; P=.009) were recorded. Conclusions: These pilot study findings revealed that a short-term intervention with a smartphone journaling app used by both patients and treatment-administering hepatologists was associated with reduced drinking and improved liver function. Trial Registration: UMIN CTR UMIN000045285; http://tinyurl.com/yvvk38tj ", doi="10.2196/44762", url="https://formative.jmir.org/2023/1/e44762/" } @Article{info:doi/10.2196/43309, author="Evans, Eric and Zengul, Ayse and Knight, Amy and Willig, Amanda and Cherrington, Andrea and Mehta, Tapan and Thirumalai, Mohanraj", title="Stakeholders' Perspectives, Needs, and Barriers to Self-Management for People With Physical Disabilities Experiencing Chronic Conditions: Focus Group Study", journal="JMIR Rehabil Assist Technol", year="2023", month="Dec", day="18", volume="10", pages="e43309", keywords="self-management", keywords="physical disabilities", keywords="physical disability", keywords="chronic condition", keywords="chronic illness", keywords="mental health", keywords="physical activity", keywords="barrier", keywords="disability", keywords="chronic", keywords="technology", keywords="interview", keywords="data", keywords="symptom", keywords="support", keywords="digital", keywords="development", keywords="need", keywords="perspective", keywords="qualitative", keywords="focus group", keywords="assistive technology", keywords="assistive technologies", abstract="Background: While self-management programs have had significant improvements for individuals with chronic conditions, less is known about the impact of self-management programs for individuals with physical disabilities who experience chronic conditions, as no holistic self-management programs exist for this population. Similarly, there is limited knowledge of how other stakeholders, such as caregivers, health experts, and researchers, view self-management programs in the context of disability, chronic health conditions, and assistive technologies. Objective: This study aimed to obtain insight into how stakeholders perceive self-management relating to physical disability, chronic conditions, and assistive technologies. Methods: Nine focus groups were conducted by 2 trained facilitators using semistructured interview guides. Each guide contained questions relating to stakeholders' experiences, challenges with self-management programs, and perceptions of assistive technologies. Focus groups were audio recorded and transcribed. Thematic analysis was conducted on the focus group data. Results: A total of 47 individuals participated in the focus groups. By using a constructivist grounded approach and inductive data collection, three main themes emerged from the focus groups: (1) perspectives, (2) needs, and (3) barriers of stakeholders. Stakeholders emphasized the importance of physical activity, mental health, symptom management, medication management, participant centeredness, and chronic disease and disability education. Participants viewed technology as a beneficial aide to their daily self-management and expressed their desire to have peer-to-peer support in web-based self-management programs. Additional views of technology included the ability to access individualized, educational content and connect with other individuals who experience similar health conditions or struggle with caregiving duties. Conclusions: The findings suggest that the development of any web-based self-management program should include mental health education and resources in addition to physical activity content and symptom management and be cost-effective. Beyond the inclusion of educational resources, stakeholders desired customization or patient centeredness in the program to meet the overall needs of individuals with physical disabilities and caregivers. The development of web-based self-management programs should be holistic in meeting the needs of all stakeholders. Trial Registration: ClinicalTrials.gov NCT05481593; https://clinicaltrials.gov/study/NCT05481593 ", doi="10.2196/43309", url="https://rehab.jmir.org/2023/1/e43309", url="http://www.ncbi.nlm.nih.gov/pubmed/38109170" } @Article{info:doi/10.2196/49380, author="Li, Xiaoyu Jenny and Yacyshyn, Elaine", title="Thoughts and Experiences of Beh{\c{c}}et Disease From Participants on a Reddit Subforum: Qualitative Online Community Analysis", journal="JMIR Form Res", year="2023", month="Dec", day="12", volume="7", pages="e49380", keywords="Bechet disease", keywords="Beh{\c{c}}et", keywords="online community", keywords="Reddit", keywords="vasculitis", keywords="quality of life", keywords="QoL", keywords="qualitative", keywords="community", keywords="morbidity", keywords="support", keywords="diagnosis", keywords="symptoms", keywords="vascular", keywords="vascular system", keywords="vascular disease", abstract="Background: Beh{\c{c}}et disease (BD) is a type of vasculitis with relapsing episodes and multisystemic clinical features, associated with significant morbidity and impact on patients' lives. People affected by BD often participate in discussions of their illness experiences. In-person support groups have limited physical accessibility and a relative lack of anonymity; however, online communities have become increasingly popular. Objective: This study investigates the perspectives and experiences of people affected by BD by examining the content shared and discussed on a subforum of the website Reddit---a popular online space for anonymous discussions. Methods: All discussion threads posted between March 9, 2021, and March 12, 2022, including posts and comments, were examined from the subforum ``r/Behcets,'' an anonymous online community of 1100 members as of March 2022. A Grounded Theory analysis was completed to identify themes and subthemes, and notable quotes were extracted from the threads. Parameters extracted from each post included the number of comments, net upvotes, category, and subcategories. Two research team members read the posts separately to identify initial codes and themes to ensure data saturation was achieved. Results: Six recurring themes were identified: (1) finding connectedness and perspectives through shared experiences, (2) struggles of the diagnostic odyssey, (3) sharing or inquiring about symptoms, (4) expressing strong emotions relating to the experience of BD, (5) the impact of BD on quality of life and personal relationships, as well as (6) COVID-19 and the COVID-19 vaccination in relation to BD. Subthemes within each theme were also identified and explored. Conclusions: This novel study provides a qualitative exploration of the perspectives and experiences of people affected by BD, shared in the anonymous and accessible online community of Reddit. The study found that people impacted by an illness seek to connect and receive validation through shared conditions and experiences. By examining the content shared in r/Behcets, this study highlights the needs of people affected by BD, identifying gaps and areas for improvement in the in-person support they receive. ", doi="10.2196/49380", url="https://formative.jmir.org/2023/1/e49380", url="http://www.ncbi.nlm.nih.gov/pubmed/38085563" } @Article{info:doi/10.2196/48609, author="Lindsay, Sally and Kosareva, Polina and Thomson, Nicole and Stinson, Jennifer", title="A Codeveloped Web-Based Disability Disclosure Toolkit for Youth With Disabilities: Mixed Methods Pilot Evaluation", journal="JMIR Form Res", year="2023", month="Dec", day="8", volume="7", pages="e48609", keywords="disability", keywords="disclosure", keywords="employment", keywords="vocational rehabilitation", keywords="youth and young adults", keywords="usability testing", keywords="qualitative", keywords="pilot study", keywords="co-design", abstract="Background: Youth and young adults with disabilities experience many barriers in securing employment such as discrimination, inaccessible environments, and lack of support. Youth often need to decide whether and how they should disclose their need for accommodations to employers, which can help them to do their best at work. However, few evidence-based toolkits focusing on disability disclosure exist for youth with various types of disabilities. Supporting youth to develop self-advocacy skills is salient because they are an underrepresented and marginalized group in the labor market. Objective: The objective of this study was to conduct a pilot evaluation of a web-based toolkit to enhance disability disclosure for youth and young adults helping to advocate for their needs and request workplace accommodations. Methods: We conducted 2 in-person focus groups to codevelop a web-based disability disclosure toolkit, which was followed by a pilot evaluation with a pre-post survey. Primary outcomes focused on the relevance of the toolkit content, preliminary perceived impact on knowledge and confidence, and open-ended feedback on the usefulness of the toolkit. Secondary outcomes focused on effectiveness (ie, measures of self-determination). Results: A total of 14 youths with various types of disabilities took part in the study (aged 20-25 years; n=11, 78\% female) including 3 who participated in the codevelopment focus group sessions and 11 youths who participated in the surveys. Our findings involved three main themes in the codevelopment sessions that included (1) disability disclosure and workplace accommodation experiences (ie, knowing when, whether, and how to disclose their disability and request workplace accommodations), (2) usefulness of the tool (ie, relatable content, format and design, and suggestions for further development), and (3) perceived impact of the toolkit (ie, navigating disclosure decisions and how to approach employers and develop other relevant employment skills). The survey findings showed that the majority of participants (10/11, 91\%) reported that the toolkit increased or changed their knowledge or understanding of disability disclosure. Most participants (8/11, 73\%) reported that the toolkit helped to increase their perceived confidence in their daily activities. The majority of participants (8/11, 73\%) agreed or strongly agreed that the toolkit was easy to understand and comprehensive. Regarding the preliminary impact of the toolkit, participants did not demonstrate any significant improvements in self-determination (all P>.05). Conclusions: Our findings emphasize the importance of codeveloping a disability disclosure toolkit with youth to enhance its relevance for their needs. Our toolkit indicates preliminary potential as an educational resource for youth and young adults with disabilities as they search for and secure employment. Further research is needed to assess the impact of the tool with larger samples to understand the impact of workplace disability disclosure decisions for youth with disabilities. ", doi="10.2196/48609", url="https://formative.jmir.org/2023/1/e48609", url="http://www.ncbi.nlm.nih.gov/pubmed/38064264" } @Article{info:doi/10.2196/48550, author="Davila, Carine and Chan, H. Stephanie and Gosline, Anna and Arenas, Zamawa and Kavanagh, Jane and Feltz, Brian and McCarthy, Elizabeth and Pitts, Tyrone and Ritchie, Christine", title="Online Forums as a Tool for Broader Inclusion of Voices on Health Care Communication Experiences and Serious Illness Care: Mixed Methods Study", journal="J Med Internet Res", year="2023", month="Dec", day="6", volume="25", pages="e48550", keywords="serious illness care", keywords="serious illness communication", keywords="mixed methods research", keywords="community-engaged design", keywords="equity in research", keywords="online forum", keywords="health care experiences", keywords="internet", keywords="illness", keywords="marginalized community", keywords="efficacy", keywords="communication", keywords="engagement", keywords="quantitative survey", keywords="health care", abstract="Background: Existing health care research, including serious illness research, often underrepresents individuals from historically marginalized communities. Capturing the nuanced perspectives of individuals around their health care communication experiences is difficult. New research strategies are needed that increase engagement of individuals from diverse backgrounds. Objective: The aim of this study was to develop a mixed methods approach with qualitative online forums to better understand health communication experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals; older adults; and people with low income, disability, or serious illness. Methods: We used a multiphase mixed methods, community-informed research approach to design study instruments and engage participants. We engaged a diverse group of collaborators with lived experience of navigating the health care system who provided feedback on instruments, added concepts for testing, and offered guidance on creating a safe experience for participants (phase 1). We conducted a national quantitative survey between April and May 2021 across intrapersonal, interpersonal, and systems-level domains, with particular focus on interpersonal communication between patients and clinicians (phase 2). We conducted two asynchronous, qualitative online forums, a technique used in market research, between June and August 2021, which allowed us to contextualize the learnings and test concepts and messages (phase 3). Using online forums allowed us to probe more deeply into results and hypotheses from the survey to better understand the ``whys'' and ``whats'' that surfaced and to test public messages to encourage action around health. Results: We engaged 46 community partners, including patients and clinicians from a Federally Qualified Health Center, to inform study instrument design. In the quantitative survey, 1854 adults responded, including 50.5\% women, 25.2\% individuals over 65 years old, and 51.9\% individuals with low income. Nearly two-thirds identified as non-Hispanic white (65.7\%), 10.4\% identified as non-Hispanic Black, and 15.5\% identified as Hispanic/Latino. An additional 580 individuals participated in online forums, including 60.7\% women, 17.4\% individuals over 65 years old, and 49.0\% individuals with low income. Among the participants, 70.3\% identified as non-Hispanic white, 16.0\% as non-Hispanic Black, and 9.5\% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the forums. Conclusions: We achieved modest overrepresentation of people who were over 65 years old, identified as non-Hispanic Black, and had low income in our online forums. The size of the online forums (N=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Individuals who identify as Hispanic/Latino remained underrepresented, likely because the online forums were offered only in English. Overall, our findings demonstrate the feasibility of using the online forum qualitative approach in a mixed methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions. ", doi="10.2196/48550", url="https://www.jmir.org/2023/1/e48550", url="http://www.ncbi.nlm.nih.gov/pubmed/38055311" } @Article{info:doi/10.2196/47145, author="Benito-Garcia, Elizabeth and Vega, Julio and Daza, J. Eric and Lee, Wei-Nchih and Kennedy, Adee and Chantelot, Jean-Marc", title="Patient and Physician Perspectives on the Use of a Connected Ecosystem for Diabetes Management: International Cross-Sectional Observational Study", journal="JMIR Form Res", year="2023", month="Nov", day="30", volume="7", pages="e47145", keywords="type 2 diabetes mellitus", keywords="insulin treatment", keywords="connected ecosystems", keywords="surveys", keywords="diabetes", keywords="diabetic", keywords="ecosystem", keywords="ecosystems", keywords="telehealth", keywords="telemedicine", keywords="eHealth", keywords="digital health", keywords="health technology", keywords="adoption", keywords="perception", keywords="attitude", keywords="intention", keywords="acceptance", abstract="Background: Collaboration between people with type 2 diabetes (T2DM) and their health care teams is important for optimal control of the disease and outcomes. Digital technologies could potentially tie together several health care-related devices and platforms into connected ecosystems (CES), but attitudes about CES are unknown. Objective: We surveyed convenience samples of patients and physicians to better understand which patient characteristics are associated with higher likelihoods of (1) participating in a potential CES program, as self-reported by patients with T2DM and (2) clinical benefit from participation in a potential CES program, as reported by physicians. Methods: Adults self-reporting a diagnosis of T2DM and current insulin use (n=197), and 33 physicians whose practices included ?20\% of such patients, were enrolled in the United States, France, and Germany. We surveyed both groups about the likelihood of patient participation in a CES. We then examined the associations between patients' clinical and sociodemographic characteristics and this likelihood. We also described characteristics of patients likely to clinically benefit from CES use, according to physicians. Results: Compared with patients in Germany and France, US patients were younger (mean age 45.3 [SD 11.9] years vs 61.9 [SD 9.2] and 65.8 [SD 9.4] years, respectively), more often female, more highly educated, and more often working full-time. In all, 51 (44.7\%) US patients, 16 (36.4\%) German patients, and 18 (46.3\%) French patients indicated strong interest in a CES program, and 115 (78.7\%) reported currently using ?1 connected device or app. However, physicians believed that only 11.3\%-19.2\% of their patients were using connected devices or apps to manage their disease. Physicians also reported infrequently recommending or prescribing connected devices to their patients, although ?80\% (n=28) of them thought that a CES could help support their patients in managing their disease. The factors most predictive of patient likelihood of participating in a CES program were cost, inclusion of medication reminders, and linking blood glucose levels to behaviors such as eating and exercise. In all countries, the most common patient expectations for a CES program were that it could help them eat more healthfully, increase their physical activity, increase their understanding of how blood glucose relates to behavior such as exercise and eating, and reduce stress. Physicians thought that newly diagnosed patients, sicker patients---those who had been hospitalized for diabetes, were currently using insulin, or who had any comorbid condition---and patients who were nonadherent to treatment were most likely to benefit from CES use. Conclusions: In this study, there was a high degree of interest in the future use of CES, although additional education is needed among both patients with T2DM and their physicians to achieve the full potential of such systems to improve self-management and clinical care for the disease. ", doi="10.2196/47145", url="https://formative.jmir.org/2023/1/e47145", url="http://www.ncbi.nlm.nih.gov/pubmed/38032701" } @Article{info:doi/10.2196/49358, author="Srivastava, Ujwal and Dasari, Shobha and Shah, Neha", title="Learnings in Digital Health Design: Insights From a Pilot Web App for Structured Note-Taking for Patients With Rheumatoid Arthritis", journal="JMIR Form Res", year="2023", month="Nov", day="28", volume="7", pages="e49358", keywords="digital health", keywords="biodesign", keywords="technology", keywords="software", keywords="web app", keywords="codesign", keywords="patient empowerment", keywords="note-taking", keywords="medical information", keywords="web application", keywords="web-based", keywords="technology engagement", abstract="Background: Patients fail to accurately remember 40\% to 80\% of medical information relayed during doctor appointments, and most standard after-visit summaries fail to effectively help patients comply with behaviors to manage their health conditions. The value of technology to empower and engage patients in their health management has been shown, and here we apply technology to help patients remember and act upon information communicated during their medical appointments. Objective: We describe the development of WellNote, a digital notebook designed for patients to create a customized plan to manage their condition, plan for their appointments, track important actions (eg, medications and labs), and receive reminders for appointments and labs. Methods: For this pilot, we chose to focus on rheumatoid arthritis, a chronic condition that relies on many of these features. The development of WellNote followed a structured method based on design thinking and co-design principles, with the app built in close collaboration with patients and a physician partner to ensure clinical relevance. Our design process consisted of 3 rounds: patient and physician interviews, visual prototypes, and a functional pilot app. Results: Over the course of the design process, WellNote's features were refined, with the final version being a digital notebook designed for patients with rheumatoid arthritis to manage their health by helping them track medications and labs and plan for appointments. It features several pages, like a dashboard, patient profile, appointment notes, preplanning, medication management, lab tracking, appointment archives, reminders, and a pillbox for medication visualization. Conclusions: WellNote's active and structured note-taking features allow patients to clearly document the information from their physician without detracting from the conversation, helping the patient to become more empowered and engaged in their health management. The co-design process empowered these stakeholders to share their needs and participate in the development of a solution that truly solves pain points for these groups. This viewpoint highlights the role of digital health tools and the co-design of new health care innovations to empower patients and support clinicians. ", doi="10.2196/49358", url="https://formative.jmir.org/2023/1/e49358", url="http://www.ncbi.nlm.nih.gov/pubmed/38015609" } @Article{info:doi/10.2196/45968, author="Taramasco, Carla and Rimassa, Carla and No{\"e}l, Ren{\'e} and Bravo Storm, Loreto Mar{\'i}a and S{\'a}nchez, C{\'e}sar", title="Co-design of a Mobile App for Engaging Breast Cancer Patients in Reporting Health Experiences: Qualitative Case Study", journal="J Med Internet Res", year="2023", month="Nov", day="27", volume="25", pages="e45968", keywords="cancer", keywords="registration systems", keywords="patient-reported outcome measures", keywords="patient-reported experience measures", keywords="software analysis and design", keywords="cancer patient report", keywords="adverse event reporting", keywords="quality of life", keywords="eHealth", keywords="mHealth", keywords="mobile health", abstract="Background: The World Health Organization recommends incorporating patient-reported experience measures and patient-reported outcome measures to ensure care processes. New technologies, such as mobile apps, could help report and monitor patients' adverse effects and doubts during treatment. However, engaging patients in the daily use of mobile apps is a challenge that must be addressed in accordance with the needs of people. Objective: We present a qualitative case study documenting the process of identifying the information needs of breast cancer patients and health care professionals during the treatment process in a Chilean cancer institution. The study aims to identify patients' information requirements for integration into a mobile app that accompanies patients throughout their treatment while also providing features for reporting adverse symptoms. Methods: We conducted focus groups with breast cancer patients who were undergoing chemotherapy (n=3) or who completed chemotherapy between 3 months and 1 year (n=1). We also surveyed health care professionals (n=9) who were involved in patient care and who belonged to the oncology committee of the cancer center where the study took place. Content analysis was applied to the responses to categorize the information needs and the means to satisfy them. A user interface was designed according to the findings of the focus groups and was assessed by 3 trained information system and user interaction design experts from 2 countries, using heuristic evaluation guidelines for mobile apps. Results: Patients' information needs were classified into 4 areas: an overview of the disease, information on treatment and day-to-day affairs, assistance on the normality and abnormality of symptoms during treatment, and symptoms relevant to report. Health care professionals required patients to be provided with information on the administrative and financial process. We noted that the active involvement of the following 4 main actors is required to satisfy the information needs: patients, caregivers, social network moderators, and health professionals. Seven usability guidelines were extracted from the heuristic evaluation recommendations. Conclusions: A mobile app that seeks to accompany breast cancer patients to report symptoms requires the involvement of multiple participants to handle the reports and day-to-day information needs. User interfaces must be designed with consideration of the patient's social conventions and the emotional load of the disease information. ", doi="10.2196/45968", url="https://www.jmir.org/2023/1/e45968", url="http://www.ncbi.nlm.nih.gov/pubmed/38010791" } @Article{info:doi/10.2196/45215, author="Braund, Heather and Dalgarno, Nancy and Chan-Nguyen, Sophy and Digby, Genevi{\`e}ve and Haji, Faizal and O'Riordan, Anne and Appireddy, Ramana", title="Exploring Patient Advisors' Perceptions of Virtual Care Across Canada: Qualitative Phenomenological Study", journal="J Med Internet Res", year="2023", month="Nov", day="23", volume="25", pages="e45215", keywords="virtual care", keywords="patient-oriented research", keywords="patient advisor", keywords="remote care", keywords="telehealth", keywords="telemedicine", keywords="phenomenology", keywords="phenomenological", keywords="perception", keywords="qualitative", abstract="Background: While virtual care services existed prior to the emergence of COVID-19, the pandemic catalyzed a rapid transition from in-person to virtual care service delivery across the Canadian health care system. Virtual care includes synchronous or asynchronous delivery of health care services through video visits, telephone visits, or secure messaging. Patient advisors are people with patient and caregiving experiences who collaborate within the health care system to share insights and experiences in order to improve health care. Objective: This study aimed to understand patient advisors' perceptions related to virtual care and potential impacts on health care quality. Methods: We adopted a phenomenological approach, whereby we interviewed 20 participants who were patient advisors across Canada using a semistructured interview protocol. The protocol was developed by content experts and medical education researchers. The interviews were audio-recorded, transcribed verbatim, and analyzed thematically. Data collection stopped once thematic saturation was reached. The study was conducted at Queen's University, Kingston, Ontario. We recruited 20 participants from 5 Canadian provinces (17 female participants and 3 male participants). Results: Six themes were identified: (1) characteristics of effective health care, (2) experiences with virtual care, (3) modality preferences, (4) involvement of others, (5) risks associated with virtual care encounters, and (6) vulnerable populations. Participants reported that high-quality health care included building relationships and treating patients holistically. In general, participants described positive experiences with virtual care during the pandemic, including greater efficiency, increased accessibility, and that virtual care was less stressful and more patient centered. Participants comparing virtual care with in-person care reported that time, scheduling, and content of interactions were similar across modalities. However, participants also shared the perception that certain modalities were more appropriate for specific clinical encounters (eg, prescription renewals and follow-up appointments). Perspectives related to the involvement of family members and medical trainees were positive. Potential risks included miscommunication, privacy concerns, and inaccurate patient assessments. All participants agreed that stakeholders should be proactive in applying strategies to support vulnerable patients. Participants also recommended education for patients and providers to improve virtual care delivery. Conclusions: Participant-reported experiences of virtual care encounters were relatively positive. Future work could focus on delivering training and resources for providers and patients. While initial experiences are positive, there is a need for ongoing stakeholder engagement and evaluation to improve patient and caregiver experiences with virtual care. ", doi="10.2196/45215", url="https://www.jmir.org/2023/1/e45215", url="http://www.ncbi.nlm.nih.gov/pubmed/37995127" } @Article{info:doi/10.2196/46607, author="Quintal, Ariane and Carreau, Isabelle and Grenier, Annie-Danielle and H{\'e}bert, Caroline and Yergeau, Christine and Berthiaume, Yves and Racine, Eric", title="An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach", journal="J Particip Med", year="2023", month="Nov", day="23", volume="15", pages="e46607", keywords="community-based participatory research", keywords="rare diseases", keywords="bioethics", keywords="delivery of health care", keywords="ethics", keywords="clinical", keywords="patient participation", keywords="empowerment", keywords="education", keywords="medical", keywords="attitude of health personnel", keywords="patient education as topic", keywords="patient partnership", abstract="Background: Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral challenges by patients, jeopardizing their life trajectories, dreams, and aspirations. Objective: This paper presents an ethical action plan for rare disease care and the process underlying its development. Methods: This action plan was designed through an ethical inquiry conducted by the Ethics and Rare Diseases Working Group, which included 3 patient partners, 2 clinician researchers, and 1 representative from Qu{\'e}bec's rare disease association. Results: The plan is structured into 4 components. Component A presents the key moral challenges encountered by patients, which are the lack of knowledge on rare diseases among health care workers, the problematic attitudes that it sometimes elicits, and the distress and powerlessness experienced by patients. Component B emphasizes a vision for patient partnership in rare disease care characterized by open-mindedness, empathy, respect, and support of patient autonomy from health care workers. Component C outlines 2 courses of action prompted by this vision: raising awareness among health care workers and empowering patients to better navigate their care. Component D compares several interventions that could help integrate these 2 courses of action in rare disease care. Conclusions: Overall, this action plan represents a toolbox that provides a review of multiple possible interventions for policy makers, hospital managers, practitioners, researchers, and patient associations to critically reflect on key moral challenges experienced by patients with rare diseases and ways to mitigate them. This paper also prompts reflection on the values underlying rare disease care, patient experiences, and health care workers' beliefs and behaviors. Health care workers and patients were the primary beneficiaries of this action plan. ", doi="10.2196/46607", url="https://jopm.jmir.org/2023/1/e46607", url="http://www.ncbi.nlm.nih.gov/pubmed/37995128" } @Article{info:doi/10.2196/46146, author="Dukhanin, Vadim and Wolff, L. Jennifer and Salmi, Liz and Harcourt, Kendall and Wachenheim, Deborah and Byock, Ira and Gonzales, J. Matthew and Niehus, Doug and Parshley, Marianne and Reay, Caroline and Epstein, Sara and Mohile, Supriya and Farrell, W. Timothy and Supiano, A. Mark and Jajodia, Anushka and DesRoches, M. Catherine and ", title="Co-Designing an Initiative to Increase Shared Access to Older Adults' Patient Portals: Stakeholder Engagement", journal="J Med Internet Res", year="2023", month="Nov", day="22", volume="25", pages="e46146", keywords="patient portal", keywords="electronic health record", keywords="care partners", keywords="stakeholder engagement", keywords="patient engagement", keywords="human-centered design", keywords="mobile phone", keywords="design", keywords="older adults", keywords="digital platform", keywords="awareness", keywords="development", keywords="engagement", keywords="stakeholder", keywords="education", abstract="Background: The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends---``care partners''---to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited. Objective: We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals. Methods: In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs. Results: Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan ``People remember less than half of what their doctors say,'' which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits. Conclusions: Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners. ", doi="10.2196/46146", url="https://www.jmir.org/2023/1/e46146", url="http://www.ncbi.nlm.nih.gov/pubmed/37991827" } @Article{info:doi/10.2196/47740, author="Hall, Andr{\'e} and Devlin, Samantha and Won, Joshua and Schmitt, Jessica and P Ridgway, Jessica", title="Electronic Patient Portal Use Among People Living With HIV", journal="J Med Internet Res", year="2023", month="Nov", day="21", volume="25", pages="e47740", keywords="HIV", keywords="patient portal", keywords="EMR", keywords="electronic medical record", keywords="health record", keywords="health records", keywords="medical record", keywords="medical records", keywords="patient portals", keywords="infectious", keywords="EHR", keywords="electronic health record", keywords="use", keywords="adoption", keywords="quality improvement", keywords="engagement", keywords="satisfaction", doi="10.2196/47740", url="https://www.jmir.org/2023/1/e47740", url="http://www.ncbi.nlm.nih.gov/pubmed/37988161" } @Article{info:doi/10.2196/44194, author="Tully, M. Laura and Nye, E. Kathleen and Ereshefsky, Sabrina and Tryon, L. Valerie and Hakusui, Komei Christopher and Savill, Mark and Niendam, A. Tara", title="Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early Psychosis Intervention Network: Qualitative Focus Group Study With a User-Centered Design Approach", journal="JMIR Hum Factors", year="2023", month="Nov", day="14", volume="10", pages="e44194", keywords="attitude", keywords="content analysis", keywords="data sharing", keywords="eHealth", keywords="ethic", keywords="focus group", keywords="health information exchange", keywords="mental health", keywords="perspective", keywords="preference", keywords="psychosis", keywords="psychotic", keywords="qualitative data", abstract="Background: Increased use of eHealth technology and user data to drive early identification and intervention algorithms in early psychosis (EP) necessitates the implementation of ethical data use practices to increase user acceptability and trust. Objective: First, the study explored EP community partner perspectives on data sharing best practices, including beliefs, attitudes, and preferences for ethical data sharing and how best to present end-user license agreements (EULAs). Second, we present a test case of adopting a user-centered design approach to develop a EULA protocol consistent with community partner perspectives and priorities. Methods: We conducted an exploratory, qualitative, and focus group--based study exploring mental health data sharing and privacy preferences among individuals involved in delivering or receiving EP care within the California Early Psychosis Intervention Network. Key themes were identified through a content analysis of focus group transcripts. Additionally, we conducted workshops using a user-centered design approach to develop a EULA that addresses participant priorities. Results: In total, 24 participants took part in the study (14 EP providers, 6 clients, and 4 family members). Participants reported being receptive to data sharing despite being acutely aware of widespread third-party sharing across digital domains, the risk of breaches, and motives hidden in the legal language of EULAs. Consequently, they reported feeling a loss of control and a lack of protection over their data. Participants indicated these concerns could be mitigated through user-level control for data sharing with third parties and an understandable, transparent EULA, including multiple presentation modalities, text at no more than an eighth-grade reading level, and a clear definition of key terms. These findings were successfully integrated into the development of a EULA and data opt-in process that resulted in 88.1\% (421/478) of clients who reviewed the video agreeing to share data. Conclusions: Many of the factors considered pertinent to informing data sharing practices in a mental health setting are consistent among clients, family members, and providers delivering or receiving EP care. These community partners' priorities can be successfully incorporated into developing EULA practices that can lead to high voluntary data sharing rates. ", doi="10.2196/44194", url="https://humanfactors.jmir.org/2023/1/e44194", url="http://www.ncbi.nlm.nih.gov/pubmed/37962921" } @Article{info:doi/10.2196/47573, author="H{\"a}gglund, Maria and Kharko, Anna and Hagstr{\"o}m, Josefin and B{\"a}rk{\aa}s, Annika and Blease, Charlotte and Cajander, {\AA}sa and DesRoches, Catherine and Fagerlund, Johansen Asbj{\o}rn and Haage, Barbara and Huvila, Isto and H{\"o}rhammer, Iiris and Kane, Bridget and Klein, O. Gunnar and Kristiansen, Eli and Luks, Kerli and Moll, Jonas and Muli, Irene and Raphaug, Hovstad Eline and Rexhepi, Hanife and Riggare, Sara and Ross, Peeter and Scandurra, Isabella and Simola, Saija and Soone, Hedvig and Wang, Bo and Ghorbanian Zolbin, Maedeh and {\AA}hlfeldt, Rose-Mharie and Kujala, Sari and Johansen, Alise Monika", title="The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia", journal="J Med Internet Res", year="2023", month="Nov", day="13", volume="25", pages="e47573", keywords="electronic health record", keywords="patient-accessible electronic health record", keywords="online records access", keywords="health data", keywords="online medical record", keywords="patient access", keywords="patient portal", keywords="national survey", abstract="Background: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. Objective: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. Methods: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ?15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. Results: In total, 29,334 users completed the survey, of which 9503 (32.40\%) were from Norway, 13,008 (44.35\%) from Sweden, 4713 (16.07\%) from Finland, and 2104 (7.17\%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93\%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as ``fair'' (11,279/29,302, 38.48\%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55\%). Mental health care was more common (6214/29,254, 21.24\%) than oncological care (3664/29,254, 12.52\%). Overall, most patients had accessed their health record ``2 to 9 times'' (11,546/29,306, 39.4\%), with the most frequent users residing in Sweden, where about one-third of patients accessed it ``more than 20 times'' (4571/13,008, 35.14\%). Conclusions: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey. ", doi="10.2196/47573", url="https://www.jmir.org/2023/1/e47573", url="http://www.ncbi.nlm.nih.gov/pubmed/37955963" } @Article{info:doi/10.2196/47718, author="Shuldiner, Jennifer and Kiran, Tara and Agarwal, Payal and Daneshvarfard, Maryam and Eldridge, Kirsten and Kim, Susie and Greiver, Michelle and Jokhio, Iffat and Ivers, Noah", title="Developing an Audit and Feedback Dashboard for Family Physicians: User-Centered Design Process", journal="JMIR Hum Factors", year="2023", month="Nov", day="9", volume="10", pages="e47718", keywords="audit and feedback", keywords="primary care", keywords="design", keywords="user-centered", keywords="audit", keywords="feedback", keywords="development", keywords="dashboard", keywords="family physician", keywords="clinical performance", keywords="implementation", keywords="users", keywords="care", abstract="Background: Audit and feedback (A\&F), the summary and provision of clinical performance data, is a common quality improvement strategy. Successful design and implementation of A\&F---or any quality improvement strategy---should incorporate evidence-informed best practices as well as context-specific end user input. Objective: We used A\&F theory and user-centered design to inform the development of a web-based primary care A\&F dashboard. We describe the design process and how it influenced the design of the dashboard. Methods: Our design process included 3 phases: prototype development based on A\&F theory and input from clinical improvement leaders; workshop with family physician quality improvement leaders to develop personas (ie, fictional users that represent an archetype character representative of our key users) and application of those personas to design decisions; and user-centered interviews with family physicians to learn about the physician's reactions to the revised dashboard. Results: The team applied A\&F best practices to the dashboard prototype. Personas were used to identify target groups with challenges and behaviors as a tool for informed design decision-making. Our workshop produced 3 user personas, Dr Skeptic, Frazzled Physician, and Eager Implementer, representing common users based on the team's experience of A\&F. Interviews were conducted to further validate findings from the persona workshop and found that (1) physicians were interested in how they compare with peers; however, if performance was above average, they were not motivated to improve even if gaps compared to other standards in their care remained; (2) burnout levels were high as physicians are trying to catch up on missed care during the pandemic and are therefore less motivated to act on the data; and (3) additional desired features included integration within the electronic medical record, and more up-to-date and accurate data. Conclusions: We found that carefully incorporating data from user interviews helped operationalize generic best practices for A\&F to achieve an acceptable dashboard that could meet the needs and goals of physicians. We demonstrate such a design process in this paper. A\&F dashboards should address physicians' data skepticism, present data in a way that spurs action, and support physicians to have the time and capacity to engage in quality improvement work; the steps we followed may help those responsible for quality improvement strategy implementation achieve these aims. ", doi="10.2196/47718", url="https://humanfactors.jmir.org/2023/1/e47718", url="http://www.ncbi.nlm.nih.gov/pubmed/37943586" } @Article{info:doi/10.2196/50208, author="Archibald, Mandy and Makinde, Sharifat and Tongol, Nicole and Levasseur-Puhach, Sydney and Roos, Leslie", title="Experiences and Priorities in Youth and Family Mental Health: Protocol for an Arts-Based Priority-Setting Focus Group Study", journal="JMIR Res Protoc", year="2023", month="Nov", day="7", volume="12", pages="e50208", keywords="arts-based methods", keywords="priority setting", keywords="mental health", keywords="eHealth", keywords="arts-based", keywords="art-based", keywords="preference", keywords="preferences", keywords="perspective", keywords="perspectives", keywords="opinion", keywords="opinions", keywords="youth", keywords="adolescent", keywords="adolescents", keywords="immigrant", keywords="immigrants", keywords="native", keywords="natives", keywords="aboriginal", keywords="aboriginals", keywords="Indigenous", keywords="digital health", keywords="telehealth", keywords="telemedicine", abstract="Background: During the COVID-19 pandemic, eHealth services enabled providers to reach families despite widespread social distancing restrictions. However, their rapid adoption often occurred without community partners' involvement and without an understanding of how they prioritize aspects of their mental health and associated service provision, both of which promote family and community-centered health care delivery. Establishing priorities in health care is essential for developing meaningful and reliable health services. As such, there is an urgent need to understand how eHealth service users, especially families who may have historically faced oppression and systemic barriers to service access, can best benefit from them. Arts-based approaches can elicit an understanding of priorities by providing an engaging and expressive means of moving beyond readily expressible discursive language and stimulating meaningful dialogue reflective of participants' lived experiences. Objective: The purpose of this research is to determine the priorities and preferences of youth; parents or caregivers; newcomers and immigrants; and Indigenous community members regarding the use of eHealth in supporting their mental health using an innovative arts-based priority-setting method. Methods: This study uses a mixed-methods approach combining qualitative, quantitative, and arts-based research. It follows a survey used to identify key knowledge partners who are interested in improving eHealth services for mental health support in Manitoba, Canada. Knowledge partners interested in group-based priority setting will be contacted to participate. We will facilitate approximately two focus groups across each subgroup of youth, parents or caregivers, newcomers or immigrants, and Indigenous community members using an integrative, quantitatively anchored arts-based method termed the ``Circle of Importance'' to understand participants' mental health priorities and how eHealth or technology may support their mental well-being. The Circle of Importance involves placing small objects, whose meaning is determined by participants, on a visual board with concentric circles that correspond to a 5-point Likert scale of importance. Following each focus group, we will evaluate participants' and focus group facilitators' experiences of the Circle of Importance using a survey and follow-up structured in-person interviews to garner how we can improve the arts-based approach used in the focus groups. Results: The PRIME (Partnering for Research Innovation in Mental Health through eHealth Excellence) theme received institutional ethics approval on August 23, 2023. Data collection is projected for August 2023, with follow-up focus groups occurring in early 2024 as required. Data analysis will occur immediately following data collection. Conclusions: Findings will directly inform a multiyear applied research agenda for PRIME aimed at improving mental health services through engaging key knowledge partners. The results may inform how arts-based methods in a priority setting can reflect aspects of experience beyond the capacities of qualitative or quantitative methods alone, and whether this approach aligns well with a positive experience of research participation. International Registered Report Identifier (IRRID): PRR1-10.2196/50208 ", doi="10.2196/50208", url="https://www.researchprotocols.org/2023/1/e50208", url="http://www.ncbi.nlm.nih.gov/pubmed/37934557" } @Article{info:doi/10.2196/47841, author="B{\"a}rk{\aa}s, Annika and Kharko, Anna and Blease, Charlotte and Cajander, {\AA}sa and Johansen Fagerlund, Asbj{\o}rn and Huvila, Isto and Johansen, Alise Monika and Kane, Bridget and Kujala, Sari and Moll, Jonas and Rexhepi, Hanife and Scandurra, Isabella and Wang, Bo and H{\"a}gglund, Maria", title="Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden", journal="J Med Internet Res", year="2023", month="Nov", day="3", volume="25", pages="e47841", keywords="electronic health records", keywords="EHR", keywords="mental health", keywords="mental health care", keywords="national survey", keywords="online records access", keywords="open notes", keywords="ORA", keywords="patient-accessible electronic health record", keywords="PAEHR", keywords="patients", keywords="user experiences", abstract="Background: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC. Objective: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups. Methods: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square. Results: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65\%, and non-MHC 3311/9203, 35.98\%), omissions (1089/3131, 34.78\%, and non-MHC 2427/9203, 26.37\%) and offenses (1183/3131, 37.78\%, and non-MHC 1616/9203, 17.56\%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13\%, and non-MHC 1366/9203, 41.26\%) and omission (MHC 622/3131, 57.12\%, and non-MHC 1329/9203, 54.76\%) were ``very important,'' but most did nothing to correct them (MHC 792/3131, 41.29\%, and non-MHC 1838/9203, 42.17\%). Most of the respondents identified as women in both groups. Conclusions: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records. ", doi="10.2196/47841", url="https://www.jmir.org/2023/1/e47841", url="http://www.ncbi.nlm.nih.gov/pubmed/37921861" } @Article{info:doi/10.2196/46897, author="Seth, Rajeev and Dhaliwal, K. Baldeep and Miller, Emily and Best, Tyler and Sullivan, Alexis and Thankachen, Betty and Qaiyum, Yawar and Shet, Anita", title="Leveling the Research Playing Field: Decolonizing Global Health Research Through Web-Based Platforms", journal="J Med Internet Res", year="2023", month="Oct", day="31", volume="25", pages="e46897", keywords="decolonization", keywords="vaccination", keywords="community", keywords="community engagement", keywords="health equity", keywords="health research", keywords="online", keywords="online platform", keywords="web-based platform", keywords="systemic barrier", keywords="diversity", keywords="marginalized", keywords="promote", keywords="equity", keywords="research", doi="10.2196/46897", url="https://www.jmir.org/2023/1/e46897", url="http://www.ncbi.nlm.nih.gov/pubmed/37906225" } @Article{info:doi/10.2196/44206, author="Keogh, Alison and Mc Ardle, R{\'i}ona and Diaconu, Gabriela Mara and Ammour, Nadir and Arnera, Valdo and Balzani, Federica and Brittain, Gavin and Buckley, Ellen and Buttery, Sara and Cantu, Alma and Corriol-Rohou, Solange and Delgado-Ortiz, Laura and Duysens, Jacques and Forman-Hardy, Tom and Gur-Arieh, Tova and Hamerlijnck, Dominique and Linnell, John and Leocani, Letizia and McQuillan, Tom and Neatrour, Isabel and Polhemus, Ashley and Remmele, Werner and Saraiva, Isabel and Scott, Kirsty and Sutton, Norman and van den Brande, Koen and Vereijken, Beatrix and Wohlrab, Martin and Rochester, Lynn and ", title="Mobilizing Patient and Public Involvement in the Development of Real-World Digital Technology Solutions: Tutorial", journal="J Med Internet Res", year="2023", month="Oct", day="27", volume="25", pages="e44206", keywords="patient involvement", keywords="patient engagement", keywords="public-private partnership", keywords="research consortium", keywords="digital mobility outcomes", keywords="real-world mobility", keywords="digital mobility measures", doi="10.2196/44206", url="https://www.jmir.org/2023/1/e44206", url="http://www.ncbi.nlm.nih.gov/pubmed/37889531" } @Article{info:doi/10.2196/49025, author="Ranusch, Allison and Lin, Ying-Jen and Dorsch, P. Michael and Allen, L. Arthur and Spoutz, Patrick and Seagull, Jacob F. and Sussman, B. Jeremy and Barnes, D. Geoffrey", title="Role of Individual Clinician Authority in the Implementation of Informatics Tools for Population-Based Medication Management: Qualitative Semistructured Interview Study", journal="JMIR Hum Factors", year="2023", month="Oct", day="24", volume="10", pages="e49025", keywords="direct oral anticoagulant", keywords="population management", keywords="implementation science", keywords="medical informatics", keywords="individual clinician authority", keywords="electronic health record", keywords="health records", keywords="EHR", keywords="EHRs", keywords="implementation", keywords="clotting", keywords="clot", keywords="clots", keywords="anticoagulant", keywords="anticoagulants", keywords="dashboard", keywords="DOAC", keywords="satisfaction", keywords="interview", keywords="interviews", keywords="pharmacist", keywords="pharmacy", keywords="pharmacology", keywords="medication", keywords="prescribe", keywords="prescribing", abstract="Background: Direct oral anticoagulant (DOAC) medications are frequently associated with inappropriate prescribing and adverse events. To improve the safe use of DOACs, health systems are implementing population health tools within their electronic health record (EHR). While EHR informatics tools can help increase awareness of inappropriate prescribing of medications, a lack of empowerment (or insufficient empowerment) of nonphysicians to implement change is a key barrier. Objective: This study examined how the individual authority of clinical pharmacists and anticoagulation nurses is impacted by and changes the implementation success of an EHR DOAC Dashboard for safe DOAC medication prescribing. Methods: We conducted semistructured interviews with pharmacists and nurses following the implementation of the EHR DOAC Dashboard at 3 clinical sites. Interview transcripts were coded according to the key determinants of implementation success. The intersections between individual clinician authority and other determinants were examined to identify themes. Results: A high level of individual clinician authority was associated with high levels of key facilitators for effective use of the DOAC Dashboard (communication, staffing and work schedule, job satisfaction, and EHR integration). Conversely, a lack of individual authority was often associated with key barriers to effective DOAC Dashboard use. Positive individual authority was sometimes present with a negative example of another determinant, but no evidence was found of individual authority co-occurring with a positive instance of another determinant. Conclusions: Increased individual clinician authority is a necessary antecedent to the effective implementation of an EHR DOAC Population Management Dashboard and positively affects other aspects of implementation. International Registered Report Identifier (IRRID): RR2-10.1186/s13012-020-01044-5 ", doi="10.2196/49025", url="https://humanfactors.jmir.org/2023/1/e49025", url="http://www.ncbi.nlm.nih.gov/pubmed/37874636" } @Article{info:doi/10.2196/46909, author="Medich, Melissa and Cannedy, L. Shay and Hoffmann, C. Lauren and Chinchilla, Y. Melissa and Pila, M. Jose and Chassman, A. Stephanie and Calderon, A. Ronald and Young, S. Alexander", title="Clinician and Patient Perspectives on the Use of Passive Mobile Monitoring and Self-Tracking for Patients With Serious Mental Illness: User-Centered Approach", journal="JMIR Hum Factors", year="2023", month="Oct", day="24", volume="10", pages="e46909", keywords="serious mental illness", keywords="mobile health", keywords="mental health", keywords="passive sensing", keywords="health informatics", keywords="behavior", keywords="self-tracking", keywords="monitoring", keywords="mental illness", keywords="prevention", keywords="acceptability", keywords="usability", keywords="usefulness", keywords="application", keywords="tool", keywords="management", keywords="mobile phone", abstract="Background: Early intervention in mental health crises can prevent negative outcomes. A promising new direction is remote mental health monitoring using smartphone technology to passively collect data from individuals to rapidly detect the worsening of serious mental illness (SMI). This technology may benefit patients with SMI, but little is known about health IT acceptability among this population or their mental health clinicians. Objective: We used the Health Information Technology Acceptability Model to analyze the acceptability and usability of passive mobile monitoring and self-tracking among patients with serious mental illness and their mental health clinicians. Methods: Data collection took place between December 2020 and June 2021 in 1 Veterans Administration health care system. Interviews with mental health clinicians (n=16) assessed the acceptability of mobile sensing, its usefulness as a tool to improve clinical assessment and care, and recommendations for program refinements. Focus groups with patients with SMI (n=3 groups) and individual usability tests (n=8) elucidated patient attitudes about engaging in health IT and perceptions of its usefulness as a tool for self-tracking and improving mental health assessments. Results: Clinicians discussed the utility of web-based data dashboards to monitor patients with SMI health behaviors and receiving alerts about their worsening health. Potential benefits included improving clinical care, capturing behaviors patients do not self-report, watching trends, and receiving alerts. Clinicians' concerns included increased workloads tied to dashboard data review, lack of experience using health IT in clinical care, and how SMI patients' associated paranoia and financial instability would impact patient uptake. Despite concerns, all mental health clinicians stated that they would recommend it. Almost all patients with SMI were receptive to using smartphone dashboards for self-monitoring and having behavioral change alerts sent to their mental health clinicians. They found the mobile app easy to navigate and dashboards easy to find and understand. Patient concerns centered on privacy and ``government tracking,'' and their phone's battery life and data plans. Despite concerns, most reported that they would use it. Conclusions: Many people with SMI would like to have mobile informatics tools that can support their illness and recovery. Similar to other populations (eg, older adults, people experiencing homelessness) this population presents challenges to adoption and implementation. Health care organizations will need to provide resources to address these and support successful illness management. Clinicians are supportive of technological approaches, with adapting informatics data into their workflow as the primary challenge. Despite clear challenges, technological developments are increasingly designed to be acceptable to patients. The research development--clinical deployment gap must be addressed by health care systems, similar to computerized cognitive training. It will ensure clinicians operate at the top of their skill set and are not overwhelmed by administrative tasks, data summarization, or reviewing data that do not indicate a need for intervention. International Registered Report Identifier (IRRID): RR2-10.2196/39010 ", doi="10.2196/46909", url="https://humanfactors.jmir.org/2023/1/e46909", url="http://www.ncbi.nlm.nih.gov/pubmed/37874639" } @Article{info:doi/10.2196/46552, author="Diefenbach, A. Michael and Marziliano, Allison and Tagai, K. Erin and Pfister, Halie and Lapitan, Emmanuel and Hall, J. Simon and Vira, Manish and Ibrahim, Said and Aibel, Kelli and Kutikov, Alexander and Horwitz, M. Eric and Miyamoto, Curtis and Reese, C. Adam and Miller, M. Suzanne", title="Preference Elicitation and Treatment Decision-Making Among Men Diagnosed With Prostate Cancer: Randomized Controlled Trial Results of Healium", journal="J Med Internet Res", year="2023", month="Oct", day="20", volume="25", pages="e46552", keywords="prostate cancer", keywords="decision-making", keywords="decision support", keywords="decision tool", keywords="web-based intervention", keywords="patient preferences", keywords="preference elicitation software", keywords="preference", keywords="RCT", keywords="randomized controlled trial", keywords="oncology", keywords="prostate", keywords="men's health", keywords="emotional", abstract="Background: Elicitation of patients' preferences is an integral part of shared decision-making, the recommended approach for prostate cancer decision-making. Existing decision aids for this population often do not specifically focus on patients' preferences. Healium is a brief interactive web-based decision aid that aims to elicit patients' treatment preferences and is designed for a low health literate population. Objective: This study used a randomized controlled trial to evaluate whether Healium, designed to target preference elicitation, is as efficacious as Healing Choices, a comprehensive education and decision tool, in improving outcomes for decision-making and emotional quality of life. Methods: Patients diagnosed with localized prostate cancer who had not yet made a treatment decision were randomly assigned to the brief Healium intervention or Healing Choices, a decision aid previously developed by our group that serves as a virtual information center on prostate cancer diagnosis and treatment. Assessments were completed at baseline, 6 weeks, and 3 months post baseline, and included decisional outcomes (decisional conflict, satisfaction with decision, and preparation for decision-making), and emotional quality of life (anxiety/tension and depression), along with demographics, comorbidities, and health literacy. Results: A total of 327 individuals consented to participate in the study (171 were randomized to the Healium intervention arm and 156 were randomized to Healing Choices). The majority of the sample was non-Hispanic (272/282, 96\%), White (239/314, 76\%), married (251/320, 78.4\%), and was on average 62.4 (SD 6.9) years old. Within both arms, there was a significant decrease in decisional conflict from baseline to 6 weeks postbaseline (Healium, P?.001; Healing Choices, P?.001), and a significant increase in satisfaction with one's decision from 6 weeks to 3 months (Healium, P=.04; Healing Choices, P=.01). Within both arms, anxiety/tension (Healium, P=.23; Healing Choices, P=.27) and depression (Healium, P=.001; Healing Choices, P?.001) decreased from baseline to 6 weeks, but only in the case of depression was the decrease statistically significant. Conclusions: Healium, our brief decision aid focusing on treatment preference elicitation, is as successful in reducing decisional conflict as our previously tested comprehensive decision aid, Healing Choices, and has the added benefit of brevity, making it the ideal tool for integration into the physician consultation and electronic medical record. Trial Registration: ClinicalTrials.gov NCT05800483; https://clinicaltrials.gov/study/NCT05800483 ", doi="10.2196/46552", url="https://www.jmir.org/2023/1/e46552", url="http://www.ncbi.nlm.nih.gov/pubmed/37862103" } @Article{info:doi/10.2196/43765, author="Petrovskaya, Olga and Karpman, Albina and Schilling, Joanna and Singh, Simran and Wegren, Larissa and Caine, Vera and Kusi-Appiah, Elizabeth and Geen, Willow", title="Patient and Health Care Provider Perspectives on Patient Access to Test Results via Web Portals: Scoping Review", journal="J Med Internet Res", year="2023", month="Oct", day="19", volume="25", pages="e43765", keywords="patient portal", keywords="web portal", keywords="MyChart", keywords="electronic health records", keywords="personal health records", keywords="patient access to records", keywords="laboratory tests", keywords="radiology reports", keywords="diagnostic imaging", keywords="laboratory test results", keywords="result release", keywords="embargo", keywords="the Cures Act", abstract="Background: A frequently used feature of electronic patient portals is the viewing of test results. Research on patient portals is abundant and offers evidence to help portal implementers make policy and practice decisions. In contrast, no comparable comprehensive summary of research addresses the direct release of and patient access to test results. Objective: This scoping review aims to analyze and synthesize published research focused on patient and health care provider perspectives on the direct release of laboratory, imaging, and radiology results to patients via web portals. Methods: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were followed. Searches were conducted in CINAHL, MEDLINE, and other databases. Citations were screened in Covidence using the inclusion and exclusion criteria. Primary studies that focused on patient and health care provider perspectives on patient access to laboratory and imaging results via web portals were included. An updated search was conducted up to August 2023. Our review included 27 articles---20 examining patient views, 3 examining provider views, and 4 examining both patient and provider views. Data extraction and inductive data analysis were informed by sensitizing concepts from sociomaterial perspectives, and 15 themes were generated. Results: Patient perspectives (24 papers) were synthesized using nine themes: (1) patterns of use and patient characteristics; (2) emotional response when viewing the results and uncertainty about their implications; (3) understanding test results; (4) preferences for mode and timing of result release; (5). information seeking and patients' actions motivated by viewing results via a portal; (6) contemplating changes in behavior and managing own health; (7) benefits of accessing test results via a portal; (8) limitations of accessing test results via a portal; and (9) suggestions for portal improvement. Health care provider perspectives (7 papers) were synthetized into six themes: (1) providers' view of benefits of patient access to results via the portal; (2) effects on health care provider workload; (3) concerns about patient anxiety; (4) timing of result release into the patient portal; (5) the method of result release into the patient portal: manual versus automatic release; and (6) the effects of hospital health information technology system on patient quality outcomes. Conclusions: The timing of the release of test results emerged as a particularly important topic. In some countries, the policy context may motivate immediate release of most tests directly into patient portals. However, our findings aim to make policy makers, health administrators, and other stakeholders aware of factors to consider when making decisions about the timing of result release. This review is sensitive to the characteristics of patient populations and portal technology and can inform result release framework policies. The findings are timely, as patient portals have become more common internationally. ", doi="10.2196/43765", url="https://www.jmir.org/2023/1/e43765", url="http://www.ncbi.nlm.nih.gov/pubmed/37856174" } @Article{info:doi/10.2196/46809, author="Sangeorzan, Irina and Antonacci, Grazia and Martin, Anne and Grodzinski, Ben and Zipser, M. Carl and Murphy, J. Rory K. and Andriopoulou, Panoraia and Cook, E. Chad and Anderson, B. David and Guest, James and Furlan, C. Julio and Kotter, N. Mark R. and Boerger, F. Timothy and Sadler, Iwan and Roberts, A. Elizabeth and Wood, Helen and Fraser, Christine and Fehlings, G. Michael and Kumar, Vishal and Jung, Josephine and Milligan, James and Nouri, Aria and Martin, R. Allan and Blizzard, Tammy and Vialle, Roberto Luiz and Tetreault, Lindsay and Kalsi-Ryan, Sukhvinder and MacDowall, Anna and Martin-Moore, Esther and Burwood, Martin and Wood, Lianne and Lalkhen, Abdul and Ito, Manabu and Wilson, Nicky and Treanor, Caroline and Dugan, Sheila and Davies, M. Benjamin", title="Toward Shared Decision-Making in Degenerative Cervical Myelopathy: Protocol for a Mixed Methods Study", journal="JMIR Res Protoc", year="2023", month="Oct", day="9", volume="12", pages="e46809", keywords="degenerative cervical myelopathy", keywords="spine", keywords="spinal cord", keywords="chronic", keywords="aging", keywords="geriatric", keywords="patient engagement", keywords="shared decision-making", keywords="process mapping", keywords="core information set", keywords="decision-making", keywords="patient education", keywords="common data element", keywords="Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy", keywords="RECODE-DCM", abstract="Background: Health care decisions are a critical determinant in the evolution of chronic illness. In shared decision-making (SDM), patients and clinicians work collaboratively to reach evidence-based health decisions that align with individual circumstances, values, and preferences. This personalized approach to clinical care likely has substantial benefits in the oversight of degenerative cervical myelopathy (DCM), a type of nontraumatic spinal cord injury. Its chronicity, heterogeneous clinical presentation, complex management, and variable disease course engenders an imperative for a patient-centric approach that accounts for each patient's unique needs and priorities. Inadequate patient knowledge about the condition and an incomplete understanding of the critical decision points that arise during the course of care currently hinder the fruitful participation of health care providers and patients in SDM. This study protocol presents the rationale for deploying SDM for DCM and delineates the groundwork required to achieve this. Objective: The study's primary outcome is the development of a comprehensive checklist to be implemented upon diagnosis that provides patients with essential information necessary to support their informed decision-making. This is known as a core information set (CIS). The secondary outcome is the creation of a detailed process map that provides a diagrammatic representation of the global care workflows and cognitive processes involved in DCM care. Characterizing the critical decision points along a patient's journey will allow for an effective exploration of SDM tools for routine clinical practice to enhance patient-centered care and improve clinical outcomes. Methods: Both CISs and process maps are coproduced iteratively through a collaborative process involving the input and consensus of key stakeholders. This will be facilitated by Myelopathy.org, a global DCM charity, through its Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy community. To develop the CIS, a 3-round, web-based Delphi process will be used, starting with a baseline list of information items derived from a recent scoping review of educational materials in DCM, patient interviews, and a qualitative survey of professionals. A priori criteria for achieving consensus are specified. The process map will be developed iteratively using semistructured interviews with patients and professionals and validated by key stakeholders. Results: Recruitment for the Delphi consensus study began in April 2023. The pilot-testing of process map interview participants started simultaneously, with the formulation of an initial baseline map underway. Conclusions: This protocol marks the first attempt to provide a starting point for investigating SDM in DCM. The primary work centers on developing an educational tool for use in diagnosis to enable enhanced onward decision-making. The wider objective is to aid stakeholders in developing SDM tools by identifying critical decision junctures in DCM care. Through these approaches, we aim to provide an exhaustive launchpad for formulating SDM tools in the wider DCM community. International Registered Report Identifier (IRRID): DERR1-10.2196/46809 ", doi="10.2196/46809", url="https://www.researchprotocols.org/2023/1/e46809", url="http://www.ncbi.nlm.nih.gov/pubmed/37812472" } @Article{info:doi/10.2196/49154, author="Holmqvist, Malin and Johansson, Linda and Lindenfalk, Bertil and Thor, Johan and Ros, Axel", title="Older Persons' and Health Care Professionals' Design Choices When Co-Designing a Medication Plan Aiming to Promote Patient Safety: Case Study", journal="JMIR Aging", year="2023", month="Oct", day="5", volume="6", pages="e49154", keywords="co-design", keywords="engagement", keywords="medications", keywords="medication plan", keywords="older people", keywords="older adults", keywords="participatory", keywords="patient experience", keywords="patient safety", keywords="remote", abstract="Background: Harm from medications is a major patient safety challenge among older persons. Adverse drug events tend to arise when prescribing or evaluating medications; therefore, interventions targeting these may promote patient safety. Guidelines highlight the value of a joint plan for continued treatment. If such a plan includes medications, a medication plan promoting patient safety is advised. There is growing evidence for the benefits of including patients and health care professionals in initiatives for improving health care products and services through co-design. Objective: This study aimed to identify participants' needs and requirements for a medication plan and explore their reasoning for different design choices. Methods: Using a case study design, we collected and analyzed qualitative and quantitative data and compared them side by side. We explored the needs and requirements for a medication plan expressed by 14 participants (older persons, nurses, and physicians) during a co-design initiative in a regional health system in Sweden. We performed a directed content analysis of qualitative data gathered from co-design sessions and interviews. Descriptive statistics were used to analyze the quantitative data from survey answers. Results: A medication plan must provide an added everyday value related to safety, effort, and engagement. The physicians addressed challenges in setting aside time to apply a medication plan, whereas the older persons raised the potential for increased patient involvement. According to the participants, a medication plan needs to support communication, continuity, and interaction. The nurses specifically addressed the need for a plan that was easy to gain an overview of. Important function requirements included providing instant access, automation, and attention. Content requirements included providing detailed information about the medication treatment. Having the plan linked to the medication list and instantly obtainable information was also requested. Conclusions: After discussing the needs and requirements for a medication plan, the participants agreed on an iteratively developed medication plan prototype linked to the medication list within the existing electronic health record. According to the participants, the medication plan prototype may promote patient safety and enable patient engagement, but concerns were raised about its use in daily clinical practice. The last step in the co-design framework is testing the intervention to explore how it works and connects with users. Therefore, testing the medication plan prototype in clinical practice would be a future step. ", doi="10.2196/49154", url="https://aging.jmir.org/2023/1/e49154", url="http://www.ncbi.nlm.nih.gov/pubmed/37796569" } @Article{info:doi/10.2196/44885, author="van der Ven, Jeffrey and van den Bemt, F. Bart J. and van Dijk, Liset and Opdam, Merel and Haegens, L. Lex and Vriezekolk, E. Johanna and Verhoef, M. Lise", title="Preferences of Patients With Musculoskeletal Disorders Regarding the Timing and Channel of eHealth and Factors Influencing Its Use: Mixed Methods Study", journal="JMIR Hum Factors", year="2023", month="Sep", day="27", volume="10", pages="e44885", keywords="eHealth", keywords="telehealth", keywords="telemedicine", keywords="chronic diseases", keywords="chronic illness", keywords="musculoskeletal disorders", keywords="multiple methods", keywords="perspectives", keywords="preferences", keywords="citizen science", keywords="digital hospital services", keywords="musculoskeletal", keywords="orthopedic", keywords="citizen", keywords="civic", keywords="society", keywords="health tech", keywords="Capability, Opportunity, Motivation and Behavior Model", keywords="COM-B", keywords="focus group", keywords="rheumatoid arthritis", keywords="arthritis", keywords="rehabilitation", keywords="kinesio", keywords="physio", keywords="rheuma", keywords="thematic analysis", keywords="semistructured interview", abstract="Background: Implementation of eHealth is progressing slowly. In-depth insight into patients' preferences and needs regarding eHealth might improve its use. Objective: This study aimed to describe when patients want to use eHealth, how patients want to communicate and receive information digitally, and what factors influence the use of eHealth in clinical practice. Methods: A multimethod study was conducted. Two meetings of {\textasciitilde}5.5 hours with plenary information sessions and focus groups were held with 22 patients from the rheumatology, orthopedics, and rehabilitation departments of a Dutch hospital specialized in musculoskeletal disorders. Assignments were performed during the focus groups in which qualitative (eg, semistructured interview questions) and quantitative (ie, voting and ranking factors) data were collected. Results: The way patients want to use eHealth varies between patients and moments of a patient's care pathway. Patients' digital channel preferences depended on the need for interaction with a health care provider (HCP). The interaction need is in turn influenced by the degree to which information or communication is specific to an individual patient and leads to consequences for the patient. The 5 most important factors influencing the use of eHealth were access to medical information (eg, electronic health records), perceived control over disease management, correctness and completeness of information, data security, and access to information or an HCP at any time. The 5 least important factors influencing eHealth use were help with using digital devices, having internet or equipment, digital skills, attitude or emotions toward eHealth, and societal benefits. Conclusions: Patients identified opportunities for using eHealth during all moments of their care pathway. However, preferences for eHealth varied between patients and phases in the care pathway. As a consequence, eHealth should be tailored to fit individual patients' preferences but also the need for interaction regarding different topics by offering a variety of digital channels with a gradient of interaction possibilities. Furthermore, digital skills and access to the internet might become less important to focus on in the future. Improving eHealth use by patients may be achieved by providing patients access to correct and safe (medical) information and more control over their care. ", doi="10.2196/44885", url="https://humanfactors.jmir.org/2023/1/e44885", url="http://www.ncbi.nlm.nih.gov/pubmed/37756049" } @Article{info:doi/10.2196/49303, author="Lammons, William and Silkens, Milou and Hunter, Jamie and Shah, Sudhir and Stavropoulou, Charitini", title="Centering Public Perceptions on Translating AI Into Clinical Practice: Patient and Public Involvement and Engagement Consultation Focus Group Study", journal="J Med Internet Res", year="2023", month="Sep", day="26", volume="25", pages="e49303", keywords="acceptance", keywords="AI in health care", keywords="AI", keywords="artificial intelligence", keywords="health care research", keywords="health care", keywords="patient and public engagement and involvement", keywords="patient engagement", keywords="public engagement", keywords="transition", abstract="Background: Artificial intelligence (AI) is widely considered to be the new technical advancement capable of a large-scale modernization of health care. Considering AI's potential impact on the clinician-patient relationship, health care provision, and health care systems more widely, patients and the wider public should be a part of the development, implementation, and embedding of AI applications in health care. Failing to establish patient and public engagement and involvement (PPIE) can limit AI's impact. Objective: This study aims to (1) understand patients' and the public's perceived benefits and challenges for AI and (2) clarify how to best conduct PPIE in projects on translating AI into clinical practice, given public perceptions of AI. Methods: We conducted this qualitative PPIE focus-group consultation in the United Kingdom. A total of 17 public collaborators representing 7 National Institute of Health and Care Research Applied Research Collaborations across England participated in 1 of 3 web-based semistructured focus group discussions. We explored public collaborators' understandings, experiences, and perceptions of AI applications in health care. Transcripts were coanalyzed iteratively with 2 public coauthors using thematic analysis. Results: We identified 3 primary deductive themes with 7 corresponding inductive subthemes. Primary theme 1, advantages of implementing AI in health care, had 2 subthemes: system improvements and improve quality of patient care and shared decision-making. Primary theme 2, challenges of implementing AI in health care, had 3 subthemes: challenges with security, bias, and access; public misunderstanding of AI; and lack of human touch in care and decision-making. Primary theme 3, recommendations on PPIE for AI in health care, had 2 subthemes: experience, empowerment, and raising awareness; and acknowledging and supporting diversity in PPIE. Conclusions: Patients and the public can bring unique perspectives on the development, implementation, and embedding of AI in health care. Early PPIE is therefore crucial not only to safeguard patients but also to increase the chances of acceptance of AI by the public and the impact AI can make in terms of outcomes. ", doi="10.2196/49303", url="https://www.jmir.org/2023/1/e49303", url="http://www.ncbi.nlm.nih.gov/pubmed/37751234" } @Article{info:doi/10.2196/45695, author="Cardwell, Trey Ethan and Ludwick, Teralynn and Fairley, Christopher and Bourne, Christopher and Chang, Shanton and Hocking, S. Jane and Kong, S. Fabian Y.", title="Web-Based STI/HIV Testing Services Available for Access in Australia: Systematic Search and Analysis", journal="J Med Internet Res", year="2023", month="Sep", day="22", volume="25", pages="e45695", keywords="STI/HIV testing", keywords="STI/HIV", keywords="self-testing", keywords="sexual health", keywords="web-based STI testing", keywords="web-based STI/HIV testing", abstract="Background: Sexually transmitted infection (STI) rates continue to rise in Australia, and timely access to testing and treatment is crucial to reduce transmission. Web-based services have been viewed as a way to improve timely access to STI/HIV testing and have proliferated in recent years. However, the regulation of these services in Australia is minimal, leading to concerns about their quality. The purpose of this review was to systematically identify web-based STI/HIV testing services available in Australia and assess them on aspects of quality, reliability, and accessibility. Objective: We aim to systematically identify and assess web-based STI/HIV testing services available in Australia. Methods: A Google search of Australian web-based services was conducted in March 2022 and repeated in September 2022 using Boolean operators and search terms related to test services (eg, on the internet or home), STIs (eg, chlamydia or gonorrhea), and test type (eg, self-test). The first 10 pages were assessed, and services were categorized as self-testing (ST; test at home), self-sampling (SS; sample at home and return to laboratory), or self-navigated pathology (SNP; specimens collected at pathology center). Website reliability was assessed against the Health on the Net Foundation code of conduct, and service quality was assessed using a scorecard that was developed based on similar reviews, Australian guidelines for in-person services, and UK standards. Additionally, we looked at measures of accessibility including cost, rural access, and time to test results. Results: Seventeen services were identified (8 ST, 2 SS, and 7 SNP). Only 4 services offered recommended testing for all 4 infections (chlamydia, gonorrhea, syphilis, and HIV) including genital, anorectal, and oropharyngeal sites, and 5 offered tests other than those recommended by Australian testing guidelines (eg, Ureaplasma). Nine services (1 SNP, 8 self-test) had no minimum age requirements for access. Reliability scores (scale 0-8) were similar between all services (range 4.75-8.0). Quality weighted scores (scale 0-58) were similar between SNP and SS services (average 44.89, SD 5.56 and 44.75, SD 1.77, respectively) but lower for ST services (22.66, SD 8.93; P=.002). Government-funded services were of higher quality than private services (43.54, SD 6.71 vs 29.43, SD 13.55; P=.03). The cost for services varied between SNP (Aus \$0-\$595; ie, US \$0-\$381.96), self-sample (Aus \$0; ie, US \$0), and ST (Aus \$0-\$135; ie, US \$0-\$86.66). The time to test results was much shorter for SNP services ({\textasciitilde}4 days) than for SS ({\textasciitilde}12 days) and ST ({\textasciitilde}14 days). Conclusions: This review identified considerable variability in the quality and reliability of the web-based STI/HIV testing services in Australia. Given the proliferation and use of these services will likely increase, it is imperative that Australia develops national standards to ensure the standard-of-care offered by web-based STI/HIV testing services is appropriate to protect Australian users from the impact of poorly performing and inappropriate tests. ", doi="10.2196/45695", url="https://www.jmir.org/2023/1/e45695", url="http://www.ncbi.nlm.nih.gov/pubmed/37738083" } @Article{info:doi/10.2196/47811, author="Marini, Christina and Cruz, Jocelyn and Payano, Leydi and Flores, Patino Ronaldo and Arena, Gina-Maria and Mandal, Soumik and Leven, Eric and Mann, Devin and Schoenthaler, Antoinette", title="Opening the Black Box of an mHealth Patient-Reported Outcome Tool for Diabetes Self-Management: Interview Study Among Patients With Type 2 Diabetes", journal="JMIR Form Res", year="2023", month="Sep", day="19", volume="7", pages="e47811", keywords="mobile health", keywords="mHealth", keywords="patient-reported outcomes", keywords="diabetes", keywords="qualitative", keywords="patient engagement", abstract="Background: Mobile health (mHealth) tools are used to collect data on patient-reported outcomes (PROs) and facilitate the assessment of patients' self-management behaviors outside the clinic environment. Despite the high availability of mHealth diabetes tools, there is a lack of understanding regarding the underlying reasons why these mHealth PRO tools succeed or fail in terms of changing patients' self-management behaviors. Objective: This study aims to identify the factors that drive engagement with an mHealth PRO tool and facilitate patients' adoption of self-management behaviors, as well as elicit suggestions for improvement. Methods: This qualitative study was conducted within the context of a randomized controlled trial designed to evaluate the efficacy of an mHealth PRO tool (known as i-Matter) versus usual care regarding reduction in glycated hemoglobin (HbA1c) levels and adherence to self-management behaviors at 12 months among patients with uncontrolled type 2 diabetes. Patients randomized to i-Matter participated in semistructured interviews about their experiences at the 3-, 6-, 9-, and 12-month study visits. A qualitative analysis of the interviews was conducted by 2 experienced qualitative researchers using conventional qualitative content analysis. Results: The sample comprised 71 patients, of whom 67 (94\%) completed at least one interview (n=48, 72\% female patients; n=25, 37\% identified as African American or Black; mean age 56.65 [SD 9.79] years). We identified 4 overarching themes and 6 subthemes. Theme 1 showed that the patients' reasons for engagement with i-Matter were multifactorial. Patients were driven by internal motivating factors that bolstered their engagement and helped them feel accountable for their diabetes (subtheme 1) and external motivating factors that helped to serve as reminders to be consistent with their self-management behaviors (subtheme 2). Theme 2 revealed that the use of i-Matter changed patients' attitudes toward their disease and their health behaviors in 2 ways: patients developed more positive attitudes about their condition and their ability to effectively self-manage it (subtheme 3), and they also developed a better awareness of their current behaviors, which motivated them to adopt healthier lifestyle behaviors (subtheme 4). Theme 3 showed that patients felt more committed to their health as a result of using i-Matter. Theme 4 highlighted the limitations of i-Matter, which included its technical design (subtheme 5) and the need for more resources to support the PRO data collected and shared through the tool (subtheme 6). Conclusions: This study isolated internal and external factors that prompted patients to change their views about their diabetes, become more engaged with the intervention and their health, and adopt healthy behaviors. These behavioral mechanisms provide important insights to drive future development of mHealth interventions that could lead to sustained behavior change. ", doi="10.2196/47811", url="https://formative.jmir.org/2023/1/e47811", url="http://www.ncbi.nlm.nih.gov/pubmed/37725427" } @Article{info:doi/10.2196/43632, author="Gould, J. Daniel and Dowsey, M. Michelle and Glanville-Hearst, Marion and Spelman, Tim and Bailey, A. James and Choong, M. Peter F. and Bunzli, Samantha", title="Patients' Views on AI for Risk Prediction in Shared Decision-Making for Knee Replacement Surgery: Qualitative Interview Study", journal="J Med Internet Res", year="2023", month="Sep", day="18", volume="25", pages="e43632", keywords="artificial intelligence", keywords="qualitative research", keywords="semistructured interviews", keywords="knee replacement", keywords="risk prediction", keywords="patient perception", keywords="patient understanding", keywords="patient preference", keywords="patient perspective", abstract="Background: The use of artificial intelligence (AI) in decision-making around knee replacement surgery is increasing, and this technology holds promise to improve the prediction of patient outcomes. Ambiguity surrounds the definition of AI, and there are mixed views on its application in clinical settings. Objective: In this study, we aimed to explore the understanding and attitudes of patients who underwent knee replacement surgery regarding AI in the context of risk prediction for shared clinical decision-making. Methods: This qualitative study involved patients who underwent knee replacement surgery at a tertiary referral center for joint replacement surgery. The participants were selected based on their age and sex. Semistructured interviews explored the participants' understanding of AI and their opinions on its use in shared clinical decision-making. Data collection and reflexive thematic analyses were conducted concurrently. Recruitment continued until thematic saturation was achieved. Results: Thematic saturation was achieved with 19 interviews and confirmed with 1 additional interview, resulting in 20 participants being interviewed (female participants: n=11, 55\%; male participants: n=9, 45\%; median age: 66 years). A total of 11 (55\%) participants had a substantial postoperative complication. Three themes captured the participants' understanding of AI and their perceptions of its use in shared clinical decision-making. The theme Expectations captured the participants' views of themselves as individuals with the right to self-determination as they sought therapeutic solutions tailored to their circumstances, needs, and desires, including whether to use AI at all. The theme Empowerment highlighted the potential of AI to enable patients to develop realistic expectations and equip them with personalized risk information to discuss in shared decision-making conversations with the surgeon. The theme Partnership captured the importance of symbiosis between AI and clinicians because AI has varied levels of interpretability and understanding of human emotions and empathy. Conclusions: Patients who underwent knee replacement surgery in this study had varied levels of familiarity with AI and diverse conceptualizations of its definitions and capabilities. Educating patients about AI through nontechnical explanations and illustrative scenarios could help inform their decision to use it for risk prediction in the shared decision-making process with their surgeon. These findings could be used in the process of developing a questionnaire to ascertain the views of patients undergoing knee replacement surgery on the acceptability of AI in shared clinical decision-making. Future work could investigate the accuracy of this patient group's understanding of AI, beyond their familiarity with it, and how this influences their acceptance of its use. Surgeons may play a key role in finding a place for AI in the clinical setting as the uptake of this technology in health care continues to grow. ", doi="10.2196/43632", url="https://www.jmir.org/2023/1/e43632", url="http://www.ncbi.nlm.nih.gov/pubmed/37721797" } @Article{info:doi/10.2196/45259, author="Verweij, Lynn and Metsemakers, M. Sanne J. J. P. and Ector, G. Genevi{\`e}ve I. C. and Rademaker, Peter and Bekker, L. Charlotte and van Vlijmen, Bas and van der Reijden, A. Bert and Blijlevens, A. Nicole M. and Hermens, G. Rosella P. M.", title="Improvement, Implementation, and Evaluation of the CMyLife Digital Care Platform: Participatory Action Research Approach", journal="J Med Internet Res", year="2023", month="Sep", day="15", volume="25", pages="e45259", keywords="eHealth", keywords="digital care platform", keywords="feasibility", keywords="patient experiences", keywords="usability", keywords="chronic myeloid leukemia", keywords="participatory action research", keywords="CMyLife", abstract="Background: The evaluation of a continuously evolving eHealth tool in terms of improvement and implementation in daily practice is unclear. The CMyLife digital care platform provides patient-centered care by empowering patients with chronic myeloid leukemia, with a focus on making medication compliance insightful, discussable, and optimal, and achieving optimal control of the biomarker BCR-ABL1. Objective: The aim of this study was to investigate to what extent the participatory action research approach is suitable for the improvement and scientific evaluation of eHealth innovations in daily clinical practice (measured by user experiences) combined with the promotion of patient empowerment. Methods: The study used iterative cycles of planning, action, and reflection, whereby participants' experiences (patients, health care providers, the CMyLife team, and app suppliers) with the platform determined next actions. Co-design workshops were the foundation of this cyclic process. Moreover, patients filled in 2 sets of questionnaires for assessing experiences with CMyLife, the actual use of the platform, and the influence of the platform after 3 and at least 6 months. Data collected during the workshops were analyzed using content analysis, which is often used for making a practical guide to action. Descriptive statistics were used to characterize the study population in terms of information related to chronic myeloid leukemia and sociodemographics, and to describe experiences with the CMyLife digital care platform and the actual use of this platform. Results: The co-design workshops provided insights that contributed to the improvement, implementation, and evaluation of CMyLife and empowered patients with chronic myeloid leukemia (for example, simplification of language, and improvement of the user friendliness of functionalities). The results of the questionnaires indicated that (1) the platform improved information provision on chronic myeloid leukemia in 67\% (33/49) of patients, (2) the use of the medication app improved medication compliance in 42\% (16/38) of patients, (3) the use of the guideline app improved guideline adherence in 44\% (11/25) of patients, and (4) the use of the platform caused patients to feel more empowered. Conclusions: A participatory action research approach is suited to scientifically evaluate digital care platforms in daily clinical practice in terms of improvement, implementation, and patient empowerment. Systematic iterative evaluation of users' needs and wishes is needed to keep care centered on patients and keep the innovation up-to-date and valuable for users. ", doi="10.2196/45259", url="https://www.jmir.org/2023/1/e45259", url="http://www.ncbi.nlm.nih.gov/pubmed/37713242" } @Article{info:doi/10.2196/41610, author="Ashtari, Sadaf and Taylor, Adam", title="Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community", journal="JMIR Form Res", year="2023", month="Sep", day="14", volume="7", pages="e41610", keywords="application development", keywords="chronic pain", keywords="database", keywords="EDS", keywords="Ehlers-Danlos syndrome", keywords="genetic disorders", keywords="health care provider", keywords="information technology", keywords="online peer support group", keywords="privacy and security", abstract="Background: Previous studies have shown positive tangible health benefits from using online support communities for informational support, daily living support, and emotional support. The specifics of how these communities can be improved have not been studied in detail. Objective: This study will investigate various sources of information that patients with genetic disorders use to learn more about their condition. We will be using patients with Ehlers-Danlos Syndrome (EDS) as a typical representation of the wider group of patients with genetic disorders. This study will also investigate the benefits and disadvantages of web-based platforms and how they can be improved. Methods: We used quantitative and qualitative analyses in this study. We undertook a web-based questionnaire survey and semistructured qualitative interviews through Zoom. Questionnaire results were analyzed using descriptive analysis. Thematic coding with constant comparison was used for interview transcript analysis. Results: A total of 436 respondents completed some or all of the survey. The majority of participants are female (386/413, 93.46\%), and 24\% (99/413) of them are in the age range of 25-34 years. Around 81\% (336/413) of the participants have some type of college degree, and 55\% (227/413) of them have graduate degrees. About 49.31\% (204/413) of them are not currently employed. Most patients stated that their health care providers did not give accurate and complete information to them regarding their health situation (mean 2.87, SD 1.34). Also, patients perceived their providers as not knowledgeable regarding web-based communities that discuss patients' conditions (mean 1.93, SD 1.15). Patients are confident in using health care resources available in web-based health communities (mean 3.78, SD 1.13). We interviewed 30 participants. The demographics of the interviewees were aligned with those of the survey participants. A total of 9 different themes were identified based on the Qualtrics survey and qualitative interviews. Participants shared the pros and cons of different online support groups that they were using and gave suggestions for improvement. They requested a centralized database with different categories of resources classified based on different diseases. They also emphasized the importance of search features and the ability to find relevant information with a hashtag. Furthermore, they elaborated on the privacy and security concerns they have regarding web-based support group platforms. Conclusions: Patients with rare diseases are finding information not available from their health care providers in community support groups. The medical community and web developers have a great opportunity to help these people by engaging with their web-based communities. ", doi="10.2196/41610", url="https://formative.jmir.org/2023/1/e41610", url="http://www.ncbi.nlm.nih.gov/pubmed/37707878" } @Article{info:doi/10.2196/38481, author="Inomata, Takenori and Sung, Jaemyoung and Nakamura, Masahiro and Iwagami, Masao and Akasaki, Yasutsugu and Fujio, Kenta and Ebihara, Nobuyuki and Ide, Takuma and Nagao, Masashi and Okumura, Yuichi and Nagino, Ken and Fujimoto, Keiichi and Eguchi, Atsuko and Hirosawa, Kunihiko and Midorikawa-Inomata, Akie and Muto, Kaori and Fujisawa, Kumiko and Kikuchi, Yota and Nojiri, Shuko and Murakami, Akira", title="Using the AllerSearch Smartphone App to Assess the Association Between Dry Eye and Hay Fever: mHealth-Based Cross-Sectional Study", journal="J Med Internet Res", year="2023", month="Sep", day="12", volume="25", pages="e38481", keywords="dry eye", keywords="hay fever", keywords="mobile health", keywords="personalized medicine", keywords="smartphone", keywords="pollinosis", keywords="rhinitis", keywords="allergic conjunctivitis", keywords="nasal symptom score", keywords="nonnasal symptom score", keywords="Ocular Surface Disease Index", keywords="Japanese Allergic Conjunctival Disease Standard Quality of Life Questionnaire", keywords="mobile phone", abstract="Background: Dry eye (DE) and hay fever (HF) show synergistic exacerbation of each other's pathology through inflammatory pathways. Objective: This study aimed to investigate the association between DE and HF comorbidity and the related risk factors. Methods: A cross-sectional observational study was conducted using crowdsourced multidimensional data from individuals who downloaded the AllerSearch smartphone app in Japan between February 2018 and May 2020. AllerSearch collected the demographics, medical history, lifestyle and residential information, HF status, DE symptoms, and HF-related quality of life. HF symptoms were evaluated using the nasal symptom score (0-15 points) and nonnasal symptom score (0-12 points). HF was defined by the participants' responses to the questionnaire as HF, non-HF, or unknown. Symptomatic DE was defined as an Ocular Surface Disease Index total score (0-100 points), with a threshold score of 13 points. HF-related quality of life was assessed using the Japanese Allergic Conjunctival Disease Standard Quality of Life Questionnaire (0-68 points). We conducted a multivariable linear regression analysis to examine the association between the severity of DE and HF symptoms. We subsequently conducted a multivariable logistic regression analysis to identify the factors associated with symptomatic DE (vs nonsymptomatic DE) among individuals with HF. Dimension reduction via Uniform Manifold Approximation and Projection stratified the comorbid DE and HF symptoms. The symptom profiles in each cluster were identified using hierarchical heat maps. Results: This study included 11,284 participants, classified into experiencing HF (9041 participants), non-HF (720 participants), and unknown (1523 participants) groups. The prevalence of symptomatic DE among individuals with HF was 49.99\% (4429/9041). Severe DE symptoms were significantly associated with severe HF symptoms: coefficient 1.33 (95\% CI 1.10-1.57; P<.001) for mild DE, coefficient 2.16 (95\% CI 1.84-2.48; P<.001) for moderate DE, and coefficient 3.80 (95\% CI 3.50-4.11; P<.001) for severe DE. The risk factors for comorbid symptomatic DE among individuals with HF were identified as female sex; lower BMI; medicated hypertension; history of hematologic, collagen, heart, liver, respiratory, or atopic disease; tomato allergy; current and previous mental illness; pet ownership; living room and bedrooms furnished with materials other than hardwood, carpet, tatami, and vinyl; discontinuation of contact lens use during the HF season; current contact lens use; smoking habits; and sleep duration of <6 hours per day. Uniform Manifold Approximation and Projection stratified the heterogeneous comorbid DE and HF symptoms into 14 clusters. In the hierarchical heat map, cluster 9 was comorbid with the most severe HF and DE symptoms, and cluster 1 showed severe HF symptoms with minimal DE-related symptoms. Conclusions: This crowdsourced study suggested a significant association between severe DE and HF symptoms. Detecting DE among individuals with HF could allow effective prevention and interventions through concurrent treatment for ocular surface management along with HF treatment. ", doi="10.2196/38481", url="https://www.jmir.org/2023/1/e38481", url="http://www.ncbi.nlm.nih.gov/pubmed/37698897" } @Article{info:doi/10.2196/46120, author="Almansour, Amal and Montague, Enid and Furst, Jacob and Raicu, Daniela", title="Evaluation of Eye Gaze Dynamics During Physician-Patient-Computer Interaction in Federally Qualified Health Centers: Systematic Analysis", journal="JMIR Hum Factors", year="2023", month="Sep", day="8", volume="10", pages="e46120", keywords="patient-physician-computer interaction", keywords="nonverbal communication", keywords="Federally Qualified Health Centers", keywords="primary care encounter", abstract="Background: Understanding the communication between physicians and patients can identify areas where they can improve and build stronger relationships. This led to better patient outcomes including increased engagement, enhanced adherence to treatment plan, and a boost in trust. Objective: This study investigates eye gaze directions of physicians, patients, and computers in naturalistic medical encounters at Federally Qualified Health Centers to understand communication patterns given different patients' diverse backgrounds. The aim is to support the building and designing of health information technologies, which will facilitate the improvement of patient outcomes. Methods: Data were obtained from 77 videotaped medical encounters in 2014 from 3 Federally Qualified Health Centers in Chicago, Illinois, that included 11 physicians and 77 patients. Self-reported surveys were collected from physicians and patients. A systematic analysis approach was used to thoroughly examine and analyze the data. The dynamics of eye gazes during interactions between physicians, patients, and computers were evaluated using the lag sequential analysis method. The objective of the study was to identify significant behavior patterns from the 6 predefined patterns initiated by both physicians and patients. The association between eye gaze patterns was examined using the Pearson chi-square test and the Yule Q test. Results: The results of the lag sequential method showed that 3 out of 6 doctor-initiated gaze patterns were followed by patient-response gaze patterns. Moreover, 4 out of 6 patient-initiated patterns were significantly followed by doctor-response gaze patterns. Unlike the findings in previous studies, doctor-initiated eye gaze behavior patterns were not leading patients' eye gaze. Moreover, patient-initiated eye gaze behavior patterns were significant in certain circumstances, particularly when interacting with physicians. Conclusions: This study examined several physician-patient-computer interaction patterns in naturalistic settings using lag sequential analysis. The data indicated a significant influence of the patients' gazes on physicians. The findings revealed that physicians demonstrated a higher tendency to engage with patients by reciprocating the patient's eye gaze when the patient looked at them. However, the reverse pattern was not observed, suggesting a lack of reciprocal gaze from patients toward physicians and a tendency to not direct their gaze toward a specific object. Furthermore, patients exhibited a preference for the computer when physicians directed their eye gaze toward it. ", doi="10.2196/46120", url="https://humanfactors.jmir.org/2023/1/e46120", url="http://www.ncbi.nlm.nih.gov/pubmed/37682590" } @Article{info:doi/10.2196/46865, author="Plys, Ekaterina and Bulliard, Jean-Luc and Chaouch, Aziz and Durand, Marie-Anne and van Duuren, A. Luuk and Br{\"a}ndle, Karen and Auer, Reto and Froehlich, Florian and Lansdorp-Vogelaar, Iris and Corley, A. Douglas and Selby, Kevin", title="Colorectal Cancer Screening Decision Based on Predicted Risk: Protocol for a Pilot Randomized Controlled Trial", journal="JMIR Res Protoc", year="2023", month="Sep", day="7", volume="12", pages="e46865", keywords="colorectal cancer screening", keywords="personalized screening", keywords="risk communication", keywords="shared decision-making", keywords="screening behavior", keywords="Switzerland", abstract="Background: Incidence of and mortality from colorectal cancer (CRC) can be effectively reduced by screening with the fecal immunochemical test (FIT) or colonoscopy. Individual risk to develop CRC within 15 years varies from <1\% to >15\% among people aged 50 to 75 years. Communicating personalized CRC risk and appropriate screening recommendations could improve the risk-benefit balance of screening test allocations and optimize the use of limited colonoscopy resources. However, significant uncertainty exists regarding the feasibility and efficacy of risk-based screening. Objective: We aim to study the effect of communicating individual CRC risk and a risk-based recommendation of the FIT or colonoscopy on participants' choice of screening test. We will also assess the feasibility of a larger clinical trial designed to evaluate the impact of personalized screening on clinical outcomes. Methods: We will perform a pilot randomized controlled trial among 880 residents aged 50 to 69 years eligible to participate in the organized screening program of the Vaud canton, Switzerland. Participants will be recruited by mail by the Vaud CRC screening program. Primary and secondary outcomes will be self-assessed through questionnaires. The risk score will be calculated using the open-source QCancer calculator that was validated in the United Kingdom. Participants will be stratified into 3 groups---low (<3\%), moderate (3\% to <6\%), and high (?6\%) risk---according to their 15-year CRC risk and randomized within each risk stratum. The intervention group participants will receive a newly designed brochure with their personalized risk and screening recommendations. The control group will receive the usual brochure of the Vaud CRC screening program. Our primary outcome, measured using a self-administered questionnaire, is appropriate screening uptake 6 months after the intervention. Screening will be defined as appropriate if participants at high risk undertake colonoscopy and participants at low risk undertake the FIT. We will also measure the acceptability of the risk score and screening recommendations and the psychological factors influencing screening behavior. We will also assess the feasibility of a full-scale randomized controlled trial. Results: We expect that a total sample of 880 individuals will allow us to detect a difference of 10\% ($\alpha$=5\%) between groups. The main outcome will be analyzed using a 2-tailed chi-squared test. We expect that appropriate screening uptake will be higher in the intervention group. No difference in overall screening uptake is expected. Conclusions: We will test the impact of personalized risk information and screening recommendations on participants' choice of screening test in an organized screening program. This study should advance our understanding of the feasibility of large-scale risk-based CRC screening. Our results may provide insights into the optimization of CRC screening by offering screening options with a better risk-benefit balance and optimizing the use of resources. Trial Registration: ClinicalTrials.gov NCT05357508; https://www.clinicaltrials.gov/study/NCT05357508 International Registered Report Identifier (IRRID): DERR1-10.2196/46865 ", doi="10.2196/46865", url="https://www.researchprotocols.org/2023/1/e46865", url="http://www.ncbi.nlm.nih.gov/pubmed/37676720" } @Article{info:doi/10.2196/47260, author="Asan, Onur and Choi, Euiji and Wang, Xiaomei", title="Artificial Intelligence--Based Consumer Health Informatics Application: Scoping Review", journal="J Med Internet Res", year="2023", month="Aug", day="30", volume="25", pages="e47260", keywords="consumer informatics", keywords="artificial intelligence", keywords="mobile health", keywords="mHealth", keywords="patient outcomes", keywords="personalized health care", keywords="machine learning", keywords="digital health", keywords="mobile phone", abstract="Background: There is no doubt that the recent surge in artificial intelligence (AI) research will change the trajectory of next-generation health care, making it more approachable and accessible to patients. Therefore, it is critical to research patient perceptions and outcomes because this trend will allow patients to be the primary consumers of health technology and decision makers for their own health. Objective: This study aimed to review and analyze papers on AI-based consumer health informatics (CHI) for successful future patient-centered care. Methods: We searched for all peer-reviewed papers in PubMed published in English before July 2022. Research on an AI-based CHI tool or system that reports patient outcomes or perceptions was identified for the scoping review. Results: We identified 20 papers that met our inclusion criteria. The eligible studies were summarized and discussed with respect to the role of the AI-based CHI system, patient outcomes, and patient perceptions. The AI-based CHI systems identified included systems in mobile health (13/20, 65\%), robotics (5/20, 25\%), and telemedicine (2/20, 10\%). All the systems aimed to provide patients with personalized health care. Patient outcomes and perceptions across various clinical disciplines were discussed, demonstrating the potential of an AI-based CHI system to benefit patients. Conclusions: This scoping review showed the trend in AI-based CHI systems and their impact on patient outcomes as well as patients' perceptions of these systems. Future studies should also explore how clinicians and health care professionals perceive these consumer-based systems and integrate them into the overall workflow. ", doi="10.2196/47260", url="https://www.jmir.org/2023/1/e47260", url="http://www.ncbi.nlm.nih.gov/pubmed/37647122" } @Article{info:doi/10.2196/41635, author="Busch-Casler, Julia and Radic, Marija", title="Trust and Health Information Exchanges: Qualitative Analysis of the Intent to Share Personal Health Information", journal="J Med Internet Res", year="2023", month="Aug", day="30", volume="25", pages="e41635", keywords="trust", keywords="eHealth", keywords="data sharing", keywords="sharing personal health information", keywords="privacy", keywords="security", keywords="health information exchange", keywords="consent", keywords="data exchange", keywords="belief-attitude-intention", keywords="behavior formation", abstract="Background: Digital health has the potential to improve the quality of care, reduce health care costs, and increase patient satisfaction. Patient acceptance and consent are a prerequisite for effective sharing of personal health information (PHI) through health information exchanges (HIEs). Patients need to form and retain trust in the system(s) they use to leverage the full potential of digital health. Germany is at the forefront of approving digital treatment options with cost coverage through statutory health insurance. However, the German population has a high level of technology skepticism and a low level of trust, providing a good basis to illuminate various facets of eHealth trust formation. Objective: In a German setting, we aimed to answer the question, How does an individual form a behavioral intent to share PHI with an HIE platform? We discussed trust and informed consent through (1) synthesizing the main influence factor models into a complex model of trust in HIE, (2) providing initial validation of influence factors based on a qualitative study with patient interviews, and (3) developing a model of trust formation for digital health apps. Methods: We developed a complex model of the formation of trust and the intent to share PHI. We provided initial validation of the influence factors through 20 qualitative, semistructured interviews in the German health care setting and used a deductive coding approach to analyze the data. Results: We found that German patients show a positive intent to share their PHI with HIEs under certain conditions. These include (perceived) information security and a noncommercial organization as the recipient of the PHI. Technology experience, age, policy and regulation, and a disposition to trust play an important role in an individual's privacy concern, which, combined with social influence, affects trust formation on a cognitive and emotional level. We found a high level of cognitive trust in health care and noncommercial research institutions but distrust in commercial entities. We further found that in-person interactions with physicians increase trust in digital health apps and PHI sharing. Patients' emotional trust depends on disposition and social influences. To form their intent to share, patients undergo a privacy calculus. Hereby, the individual's benefit (eg, convenience), benefits for the individual's own health, and the benefits for public welfare often outweigh the perceived risks of sharing PHI. Conclusions: With the higher demand for timely PHI, HIE providers will need to clearly communicate the benefits of their solutions and their information security measures to health care providers (physicians, nursing and administrative staff) and patients and include them as key partners to increase trust. Offering easy access and educational measures as well as the option for specific consent may increase patients' trust and their intention to share PHI. ", doi="10.2196/41635", url="https://www.jmir.org/2023/1/e41635", url="http://www.ncbi.nlm.nih.gov/pubmed/37647102" } @Article{info:doi/10.2196/45370, author="Han, Noah and Paul, A. Rachel and Bardakjian, Tanya and Kargilis, Daniel and Bradbury, R. Angela and Chen-Plotkin, Alice and Tropea, F. Thomas", title="User and Usability Testing of a Web-Based Genetics Education Tool for Parkinson Disease: Mixed Methods Study", journal="JMIR Bioinform Biotech", year="2023", month="Aug", day="30", volume="4", pages="e45370", keywords="Parkinson disease", keywords="genetic testing", keywords="teleneurology", keywords="patient education", keywords="neurology", keywords="genetic", keywords="usability", keywords="user testing", keywords="web-based", keywords="internet-based", keywords="web-based resource", keywords="mobile phone", abstract="Background: Genetic testing is essential to identify research participants for clinical trials enrolling people with Parkinson disease (PD) carrying a variant in the glucocerebrosidase (GBA) or leucine-rich repeat kinase 2 (LRRK2) genes. The limited availability of professionals trained in neurogenetics or genetic counseling is a major barrier to increased testing. Telehealth solutions to increase access to genetics education can help address issues around counselor availability and offer options to patients and family members. Objective: As an alternative to pretest genetic counseling, we developed a web-based genetics education tool focused on GBA and LRRK2 testing for PD called the Interactive Multimedia Approach to Genetic Counseling to Inform and Educate in Parkinson's Disease (IMAGINE-PD) and conducted user testing and usability testing. The objective was to conduct user and usability testing to obtain stakeholder feedback to improve IMAGINE-PD. Methods: Genetic counselors and PD and neurogenetics subject matter experts developed content for IMAGINE-PD specifically focused on GBA and LRRK2 genetic testing. Structured interviews were conducted with 11 movement disorder specialists and 13 patients with PD to evaluate the content of IMAGINE-PD in user testing and with 12 patients with PD to evaluate the usability of a high-fidelity prototype according to the US Department of Health and Human Services Research-Based Web Design \& Usability Guidelines. Qualitative data analysis informed changes to create a final version of IMAGINE-PD. Results: Qualitative data were reviewed by 3 evaluators. Themes were identified from feedback data of movement disorder specialists and patients with PD in user testing in 3 areas: content such as the topics covered, function such as website navigation, and appearance such as pictures and colors. Similarly, qualitative analysis of usability testing feedback identified additional themes in these 3 areas. Key points of feedback were determined by consensus among reviewers considering the importance of the comment and the frequency of similar comments. Refinements were made to IMAGINE-PD based on consensus recommendations by evaluators within each theme at both user testing and usability testing phases to create a final version of IMAGINE-PD. Conclusions: User testing for content review and usability testing have informed refinements to IMAGINE-PD to develop this focused, genetics education tool for GBA and LRRK2 testing. Comparison of this stakeholder-informed intervention to standard telegenetic counseling approaches is ongoing. ", doi="10.2196/45370", url="https://bioinform.jmir.org/2023/1/e45370" } @Article{info:doi/10.2196/38447, author="Scheckel, Benjamin and Schmidt, Katharina and Stock, Stephanie and Reda{\`e}lli, Marcus", title="Patient Portals as Facilitators of Engagement in Patients With Diabetes and Chronic Heart Disease: Scoping Review of Usage and Usability", journal="J Med Internet Res", year="2023", month="Aug", day="25", volume="25", pages="e38447", keywords="patient portal", keywords="eHealth", keywords="online platform", keywords="usability", keywords="feasibility", keywords="diabetes", keywords="heart disease", abstract="Background: Patient portals have the potential to improve care for chronically ill patients by engaging them in their treatment. These platforms can work, for example, as a standalone self-management intervention or a tethered link to treatment providers in routine care. Many different types of portals are available for different patient groups, providing various features. Objective: This scoping review aims to summarize the current literature on patient portals for patients with diabetes mellitus and chronic heart disease regarding usage behavior and usability. Methods: We conducted this review according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement for scoping reviews. We performed database searches using PubMed, PsycInfo, and CINAHL, as well as additional searches in reviews and reference lists. We restricted our search to 2010. Qualitative and quantitative studies, and studies using both approaches that analyzed usage behavior or usability of patient portals were eligible. We mapped portal features according to broad thematic categories and summarized the results of the included studies separately according to outcome and research design. Results: After screening, we finally included 85 studies. Most studies were about patients with diabetes, included patients younger than 65 years, and were conducted in the United States. Portal features were categorized into educational/general information, reminder, monitoring, interactivity, personal health information, electronic/personal health record, and communication. Portals mostly provided educational, monitoring, and communication-related features. Studies reported on usage behavior including associated variables, usability dimensions, and suggestions for improvement. Various ways of reporting usage frequency were identified. A noticeable decline in portal usage over time was reported frequently. Age was most frequently studied in association with portal use, followed by gender, education, and eHealth literacy. Younger age and higher education were often associated with higher portal use. In two-thirds of studies reporting on portal usability, the portals were rated as user friendly and comprehensible, although measurement and reporting were heterogeneous. Portals were considered helpful for self-management through positive influences on motivation, health awareness, and behavioral changes. Helpful features for self-management were educational/general information and monitoring. Barriers to portal use were general (eg, aspects of design or general usability), related to specific situations during portal use (eg, login procedure), or not portal specific (eg, user skills and preferences). Frequent themes were aspects of design, usability, and technology. Suggestions for improvement were mainly related to technical issues and need for support. Conclusions: The current state of research emphasizes the importance of involving patients in the development and evaluation of patient portals. The consideration of various research designs in a scoping review is helpful for a deeper understanding of usage behavior and usability. Future research should focus on the role of disease burden, and usage behavior and usability among older patients. ", doi="10.2196/38447", url="https://www.jmir.org/2023/1/e38447", url="http://www.ncbi.nlm.nih.gov/pubmed/37624629" } @Article{info:doi/10.2196/39089, author="Wu, Chenguang Doris and Zhao, Xianduo and Wu, Ji", title="Online Physician-Patient Interaction and Patient Satisfaction: Empirical Study of the Internet Hospital Service", journal="J Med Internet Res", year="2023", month="Aug", day="24", volume="25", pages="e39089", keywords="internet hospital", keywords="online health service", keywords="online physician-patient interaction", keywords="patient satisfaction", keywords="COVID-19", abstract="Background: In China, a form of online health service called the internet hospital became a prominent means of patient care when face-to-face visits were not possible during the COVID-19 pandemic to minimize transmission of the SARS-CoV-2 virus. Patients' internet hospital experiences largely depend on online physician-patient interaction. Yet, little is known about how physicians can improve patient satisfaction by using specific communication strategies online. Objective: This study aimed to identify specific communication strategies to help physicians deliver better quality internet hospital services. We also outline recommendations for hospitals to operate internet hospital platforms more effectively. Methods: A longitudinal data set was collected from an internet hospital platform operated by a top hospital in China. By extracting communication patterns from approximately 20,000 records of online health care services and by controlling the features of service requests, we tested the impacts of response load, more detailed style, and emotional comfort on patient satisfaction. We further explored the effects of these communication patterns in different service contexts. Results: Physicians with a low response load, a more detailed style, and expressions of emotional comfort received more positive patient feedback. Response load did not affect patient satisfaction with free online health service, whereas a more detailed style and emotional comfort enhanced satisfaction with free service. Response load significantly reduced patient satisfaction with paid online health service, while a more detailed style had no effect. Compared with free service, emotional comfort more strongly promoted patient satisfaction with paid service. Conclusions: The communication strategies identified can help physicians provide patients with a better internet hospital experience. These strategies require hospitals to schedule each physician's online service period more appropriately. In addition, tailoring the strategies to service situations can facilitate more targeted and effective internet hospital service for patients. ", doi="10.2196/39089", url="https://www.jmir.org/2023/1/e39089", url="http://www.ncbi.nlm.nih.gov/pubmed/37616031" } @Article{info:doi/10.2196/44707, author="Luetke Lanfer, Hanna and Reifegerste, Doreen and Berg, Annika and Memenga, Paula and Baumann, Eva and Weber, Winja and Geulen, Julia and M{\"u}ller, Anne and Hahne, Andrea and Weg-Remers, Susanne", title="Understanding Trust Determinants in a Live Chat Service on Familial Cancer: Qualitative Triangulation Study With Focus Groups and Interviews in Germany", journal="J Med Internet Res", year="2023", month="Aug", day="23", volume="25", pages="e44707", keywords="trust", keywords="live chat", keywords="web-based health seeking", keywords="qualitative research", keywords="cancer", abstract="Background: In dealing with familial cancer risk, seeking web-based health information can be a coping strategy for different stakeholder groups (ie, patients, relatives, and those suspecting an elevated familial cancer risk). In the vast digital landscape marked by a varied quality of web-based information and evolving technologies, trust emerges as a pivotal factor, guiding the process of health information seeking and interacting with digital health services. This trust formation in health information can be conceptualized as context dependent and multidimensional, involving 3 key dimensions: information seeker (trustor), information provider (trustee), and medium or platform (application). Owing to the rapid changes in the digital context, it is critical to understand how seekers form trust in new services, given the interplay among these different dimensions. An example of such a new service is a live chat operated by physicians for the general public with personalized cancer-related information and a focus on familial cancer risk. Objective: To gain a comprehensive picture of trust formation in a cancer-related live chat service, this study investigates the 3 dimensions of trust---trustor, trustee, and application---and their respective relevant characteristics based on a model of trust in web-based health information. In addition, the study aims to compare these characteristics across the 3 different stakeholder groups, with the goal to enhance the service's trustworthiness for each group. Methods: This qualitative study triangulated the different perspectives of medical cancer advisers, advisers from cancer support groups, and members of the public in interviews and focus group discussions to explore the 3 dimensions of trust---trustor, trustee, and application---and their determinants for a new live chat service for familial cancer risk to be implemented at the German Cancer Information Service. Results: The results indicate that experience with familial cancer risk is the key trustor characteristic to using, and trusting information provided by, the live chat service. The live chat might also be particularly valuable for people from minority groups who have unmet needs from physician-patient interactions. Participants highlighted trustee characteristics such as ability, benevolence, integrity, and humanness (ie, not a chatbot) as pivotal in a trustworthy cancer live chat service. Application-related characteristics, including the reputation of the institution, user-centric design, modern technology, and visual appeal, were also deemed essential. Despite the different backgrounds and sociodemographics of the 3 stakeholder groups, many overlaps were found among the 3 trust dimensions and their respective characteristics. Conclusions: Trust in a live chat for cancer information is formed by different dimensions and characteristics of trust. This study underscores the importance of understanding trust formation in digital health services and suggests potential enhancements for effective, trustworthy interactions in live chat services (eg, by providing biographies of the human medical experts to differentiate them from artificial intelligence chatbots). ", doi="10.2196/44707", url="https://www.jmir.org/2023/1/e44707", url="http://www.ncbi.nlm.nih.gov/pubmed/37610815" } @Article{info:doi/10.2196/44267, author="LaMonica, M. Haley and Crouse, J. Jacob and Song, C. Yun J. and Alam, Mafruha and Wilson, E. Chloe and Hindmarsh, Gabrielle and Yoon, Adam and Boulton, A. Kelsie and Ekambareshwar, Mahalakshmi and Loblay, Victoria and Troy, Jakelin and Torwali, Mujahid and Guastella, J. Adam and Banati, B. Richard and Hickie, B. Ian", title="Developing Culturally Appropriate Content for a Child-Rearing App to Support Young Children's Socioemotional and Cognitive Development in Afghanistan: Co-Design Study", journal="JMIR Form Res", year="2023", month="Aug", day="23", volume="7", pages="e44267", keywords="child development", keywords="digital technology", keywords="global health", keywords="co-design", keywords="participatory research", keywords="stakeholder participation", keywords="mobile app", keywords="smartphone", keywords="mobile phone", keywords="Afghanistan", abstract="Background: Optimal child-rearing practices can help mitigate the consequences of detrimental social determinants of health in early childhood. Given the ubiquity of personal digital technologies worldwide, the direct delivery of evidence-based information about early childhood development holds great promise. However, to make the content of these novel systems effective, it is crucial to incorporate place-based cultural beliefs, traditions, circumstances, and value systems of end users. Objective: This paper describes the iterative approach used to develop the Thrive by Five child-rearing app in collaboration with Afghan parents, caregivers (eg, grandparents, aunts, and nannies), and subject matter experts (SMEs). We outline how co-design methodologies informed the development and cultural contextualization of content to meet the specific needs of Afghan parents and the content was tested and refined in collaboration with key Afghan stakeholders. Methods: The preliminary content was developed based on a comprehensive literature review of the historical and sociocultural contexts in Afghanistan, including factors that influence child-rearing practices and early childhood development. After an initial review and refinement based on feedback from SMEs, this content was populated into a beta app for testing. Overall, 8 co-design workshops were conducted in July and August 2021 and February 2022 with 39 Afghan parents and caregivers and 6 SMEs to collect their feedback on the app and its content. The workshops were audio recorded and transcribed; detailed field notes were taken by 2 scribes. A theoretical thematic analysis using semantic codes was conducted to inform the refinement of existing content and development of new content to fulfill the needs identified by participants. Results: The following 4 primary themes were identified: child-rearing in the Afghan sociocultural context, safety concerns, emotion and behavior management, and physical health and nutrition. Overall, participants agreed that the app had the potential to deliver valuable information to Afghan parents; however, owing to the volatility in the country, participants recommended including more activities that could be safely done indoors, as mothers and children are required to spend most of their time at home. Additionally, restrictions on public engagement in music required the removal of activities referencing singing that might be performed outside the home. Further, activities to help parents reduce their children's screen time, promote empathy, manage emotions, regulate behavior, and improve physical health and nutrition were requested. Conclusions: Direct engagement with Afghan parents, caregivers, and SMEs through co-design workshops enabled the development and refinement of evidence-based, localized, and contextually relevant child-rearing activities promoting healthy social, emotional, and cognitive development during the first 5 years of children's lives. Importantly, the content was adapted for the ongoing conflict in Afghanistan with the aim of empowering Afghan parents and caregivers to support their children's developmental potential despite the security concerns and situational stressors. ", doi="10.2196/44267", url="https://formative.jmir.org/2023/1/e44267", url="http://www.ncbi.nlm.nih.gov/pubmed/37610805" } @Article{info:doi/10.2196/46017, author="Lehmann, Jens and de Ligt, M. Kelly and Tipelius, Stefanie and Giesinger, M. Johannes and Sztankay, Monika and Voigt, Sandra and van de Poll-Franse, V. Lonneke and Rumpold, Gerhard and Weger, Roman and Willenbacher, Ella and Willenbacher, Wolfgang and Holzner, Bernhard", title="Adherence to Patient-Reported Symptom Monitoring and Subsequent Clinical Interventions for Patients With Multiple Myeloma in Outpatient Care: Longitudinal Observational Study", journal="J Med Internet Res", year="2023", month="Aug", day="22", volume="25", pages="e46017", keywords="neoplasms", keywords="patient-reported outcome measures", keywords="quality of life", keywords="ambulatory care", keywords="multiple myeloma", keywords="symptom monitoring", keywords="symptoms", keywords="monitoring", keywords="myeloma", keywords="cancer patient", keywords="therapy", keywords="application", keywords="treatment", keywords="web-based assessment", keywords="clinical care", abstract="Background: The use of software to monitor patient-reported outcome measures (PROMs) can improve outcomes for patients with cancer receiving anticancer therapy; however, evidence from applications used in routine clinical practice is lacking. Objective: We aimed to investigate adherence to and patient perceptions of a weekly, web-based PROM symptom monitoring program in routine clinical practice for patients with Multiple Myeloma. Moreover, we aimed to capture how clinical alerts prompted by the system influenced clinical care. Methods: We conducted a single-center longitudinal observational study to evaluate patient adherence to and perceptions of the PROM monitoring software in routine practice. Patients with Multiple Myeloma remotely completed weekly treatment-specific PROMs to monitor key symptoms via a dedicated web-based platform. Alarming symptoms triggered clinical alerts in the application for the treatment team, which could initiate clinical interventions. The primary outcomes were the web-based assessment completion rate and patients' perceptions of the monitoring program, as assessed by an evaluation questionnaire. Moreover, clinical alerts prompted by the system and consequential clinical interventions were analyzed. Results: Between July 2021 and June 2022, a total of 55 patients were approached for participation; 39 patients participated (24, 61\% male, mean age 63.2, SD 9.2 years). The median assessment completion rate out of all weekly scheduled assessments was 70.3\% (IQR 41.2\%-89.6\%). Most patients (77\%) felt that the health care team was better informed about their health status due to the web-based assessments. Clinical alerts were triggered for 1758 of 14,639 (12\%) reported symptoms. For 548 of 1758 (31.2\%) alerts, the symptom had been registered before and no further action was required; for 348 of 1758 (19.9\%) alerts, telephone consultation and self-management advice sufficed. Higher-level interventions were seldom needed in response to alerts: referral to a doctor or specialist (88/1758, 5\% alerts), medication changes (22/1758, 1.3\%), scheduling additional diagnostics (9/1758, 0.5\%), or unplanned emergency visits (7/1758, 0.4\%). Most patients (55\%) reported the calls in response to alerts gave them ``quite a bit'' or ``very much'' of an added feeling of security during therapy. Conclusions: Our study shows that high adherence to regular and tailored PROM monitoring can be achieved in routine clinical care. The findings provide valuable insight into how the PROM monitoring program and the clinical alerts and resulting interventions shaped clinical practice. Trial Registration: ClinicalTrials.gov NCT05036863; https://clinicaltrials.gov/study/NCT05036863 ", doi="10.2196/46017", url="https://www.jmir.org/2023/1/e46017", url="http://www.ncbi.nlm.nih.gov/pubmed/37606979" } @Article{info:doi/10.2196/41552, author="Nakikj, Drashko and Kreda, David and Gehlenborg, Nils", title="Alerts and Collections for Automating Patients' Sensemaking and Organizing of Their Electronic Health Record Data for Reflection, Planning, and Clinical Visits: Qualitative Research-Through-Design Study", journal="JMIR Hum Factors", year="2023", month="Aug", day="21", volume="10", pages="e41552", keywords="patients", keywords="electronic health records", keywords="sensemaking", keywords="pattern detection", keywords="data organization", keywords="alerts", keywords="reports", keywords="collections", abstract="Background: Electronic health record (EHR) data from multiple providers often exhibit important but convoluted and complex patterns that patients find hard and time-consuming to identify and interpret. However, existing patient-facing applications lack the capability to incorporate automatic pattern detection robustly and toward supporting making sense of the patient's EHR data. In addition, there is no means to organize EHR data in an efficient way that suits the patient's needs and makes them more actionable in real-life settings. These shortcomings often result in a skewed and incomplete picture of the patient's health status, which may lead to suboptimal decision-making and actions that put the patient at risk. Objective: Our main goal was to investigate patients' attitudes, needs, and use scenarios with respect to automatic support for surfacing important patterns in their EHR data and providing means for organizing them that best suit patients' needs. Methods: We conducted an inquisitive research-through-design study with 14 participants. Presented in the context of a cutting-edge application with strong emphasis on independent EHR data sensemaking, called Discovery, we used high-level mock-ups for the new features that were supposed to support automatic identification of important data patterns and offer recommendations---Alerts---and means for organizing the medical records based on patients' needs, much like photos in albums---Collections. The combined audio recording transcripts and in-study notes were analyzed using the reflexive thematic analysis approach. Results: The Alerts and Collections can be used for raising awareness, reflection, planning, and especially evidence-based patient-provider communication. Moreover, patients desired carefully designed automatic pattern detection with safe and actionable recommendations, which produced a well-tailored and scoped landscape of alerts for both potential threats and positive progress. Furthermore, patients wanted to contribute their own data (eg, progress notes) and log feelings, daily observations, and measurements to enrich the meaning and enable easier sensemaking of the alerts and collections. On the basis of the findings, we renamed Alerts to Reports for a more neutral tone and offered design implications for contextualizing the reports more deeply for increased actionability; automatically generating the collections for more expedited and exhaustive organization of the EHR data; enabling patient-generated data input in various formats to support coarser organization, richer pattern detection, and learning from experience; and using the reports and collections for efficient, reliable, and common-ground patient-provider communication. Conclusions: Patients need to have a flexible and rich way to organize and annotate their EHR data; be introduced to insights from these data---both positive and negative; and share these artifacts with their physicians in clinical visits or via messaging for establishing shared mental models for clear goals, agreed-upon priorities, and feasible actions. ", doi="10.2196/41552", url="https://humanfactors.jmir.org/2023/1/e41552", url="http://www.ncbi.nlm.nih.gov/pubmed/37603400" } @Article{info:doi/10.2196/47298, author="Goueth, Rose and Holt, Kelsey and Eden, B. Karen and Hoffman, Aubri", title="Clinicians' Perspectives and Proposed Solutions to Improve Contraceptive Counseling in the United States: Qualitative Semistructured Interview Study With Clinicians From the Society of Family Planning", journal="JMIR Form Res", year="2023", month="Aug", day="21", volume="7", pages="e47298", keywords="contraceptive counseling", keywords="qualitative study", keywords="decision making", keywords="decision aids", keywords="clinician engagement", keywords="user-centered design", keywords="contraceptive", keywords="birth control", keywords="clinicians' perspectives", keywords="patient-centered counseling", keywords="sexual health", keywords="family planning", abstract="Background: Contraceptive care is a key element of reproductive health, yet only 12\%-30\% of women report being able to access and receive the information they need to make these complex, personal health care decisions. Current guidelines recommend implementing shared decision-making approaches; and tools such as patient decision aid (PtDA) applications have been proposed to improve patients' access to information, contraceptive knowledge, decisional conflict, and engagement in decision-making and contraception use. To inform the design of meaningful, effective, elegant, and feasible PtDA applications, studies are needed of all users' current experiences, needs, and barriers. While multiple studies have explored patients' experiences, needs, and barriers, little is known about clinicians' experiences, perspectives, and barriers to delivering contraceptive counseling. Objective: This study focused on assessing clinicians' experiences, including their perspectives of patients' needs and barriers. It also explored clinicians' suggestions for improving contraceptive counseling and the feasibility of a contraceptive PtDA. Methods: Following the decisional needs assessment approach, we conducted semistructured interviews with clinicians recruited from the Society of Family Planning. The Ottawa Decision Support Framework informed the interview guide and initial codebook, with a specific focus on decision support and decisional needs as key elements that should be assessed from the clinicians' perspective. An inductive content approach was used to analyze data and identify primary themes and suggestions for improvement. Results: Fifteen clinicians (12 medical doctors and 3 nurse practitioners) participated, with an average of 19 years of experience in multiple regions of the United States. Analyses identified 3 primary barriers to the provision of quality contraceptive counseling: gaps in patients' underlying sexual health knowledge, biases that impede decision-making, and time constraints. All clinicians supported the development of contraceptive PtDAs as a feasible solution to these main barriers. Multiple suggestions for improvement were provided, including clinician- and system-level training, tools, and changes that could support successful implementation. Conclusions: Clinicians and developers interested in improving contraceptive counseling and decision-making may wish to incorporate approaches that assess and address upstream factors, such as sexual health knowledge and existing heuristics and biases. Clinical leaders and administrators may also wish to prioritize solutions that improve equity and accessibility, including PtDAs designed to provide education and support in advance of the time-constrained consultations, and strategic training opportunities that support cultural awareness and shared decision-making skills. Future studies can then explore whether well-designed, user-centered shared decision-making programs lead to successful and sustainable uptake and improve patients' reproductive health contraceptive decision-making. ", doi="10.2196/47298", url="https://formative.jmir.org/2023/1/e47298", url="http://www.ncbi.nlm.nih.gov/pubmed/37603407" } @Article{info:doi/10.2196/46953, author="Wang, Jiamin and Zhen, Xuemei and Coyte, C. Peter and Shao, Di and Zhao, Ni and Chang, Lele and Feng, Yujia and Sun, Xiaojie", title="Association Between Online Health Information--Seeking Behaviors by Caregivers and Delays in Pediatric Cancer: Mixed Methods Study in China", journal="J Med Internet Res", year="2023", month="Aug", day="16", volume="25", pages="e46953", keywords="online health information--seeking behaviors", keywords="patient delay", keywords="diagnostic delay", keywords="treatment delay", keywords="mixed methods study", abstract="Background: Pediatric cancer patients in China often present at an advanced stage of disease resulting in lower survival and poorer health outcomes. One factor hypothesized to contribute to delays in pediatric cancer has been the online health information--seeking (OHIS) behaviors by caregivers. Objective: This study aims to examine the association between OHIS behaviors by caregivers and delays for Chinese pediatric cancer patients using a mixed methods approach. Methods: This study used a mixed methods approach, specifically a sequential explanatory design. OHIS behavior by the caregiver was defined as the way caregivers access information relevant to their children's health via the Internet. Delays in pediatric cancer were defined as any one of the following 3 types of delay: patient delay, diagnosis delay, or treatment delay. The quantitative analysis methods included descriptive analyses, Student t tests, Pearson chi-square test, and binary logistic regression analysis, all performed using Stata. The qualitative analysis methods included conceptual content analysis and the Colaizzi method. Results: A total of 303 pediatric cancer patient-caregiver dyads was included in the quantitative survey, and 29 caregivers completed the qualitative interview. Quantitative analysis results revealed that nearly one-half (151/303, 49.8\%) of patients experienced delays in pediatric cancer, and the primary type of delay was diagnosis delay (113/303, 37.3\%), followed by patient delay (50/303, 16.5\%) and treatment delay (24/303, 7.9\%). In this study, 232 of the 303 (76.6\%) caregiver participants demonstrated OHIS behaviors. When those engaged in OHIS behaviors were compared with their counterparts, the likelihood of patient delay more than doubled (odds ratio=2.21; 95\% CI 1.03-4.75). Qualitative analysis results showed that caregivers' OHIS behaviors impacted the cancer care pathway by influencing caregivers' symptom appraisal before the first medical contact and caregivers' acceptance of health care providers' diagnostic and treatment decisions. Conclusions: Our ?ndings suggest that OHIS among Chinese pediatric caregivers may be a risk factor for increasing the likelihood of patient delay. Our government and society should make a concerted effort to regulate online health information and improve its quality. Specialized freemium consultations provided by health care providers via online health informatic platforms are needed to shorten the time for caregivers' cancer symptom appraisal before the first medical contact. ", doi="10.2196/46953", url="https://www.jmir.org/2023/1/e46953", url="http://www.ncbi.nlm.nih.gov/pubmed/37585244" } @Article{info:doi/10.2196/45952, author="Boskey, R. Elizabeth and Quint, Meg and Xu, Rena and Kremen, Jessica and Estrada, Carlos and Tham, Regina and Kane, Kaiden and Reisner, L. Sari", title="Gender Affirmation--Related Information-Seeking Behaviors in a Diverse Sample of Transgender and Gender-Diverse Young Adults: Survey Study", journal="JMIR Form Res", year="2023", month="Aug", day="15", volume="7", pages="e45952", keywords="web-based health", keywords="information seeking", keywords="transgender youth", keywords="health communication", keywords="survey", keywords="gender diverse", keywords="youth", keywords="United States", keywords="support", keywords="gender identity", keywords="accessibility", keywords="transgender community", keywords="web-based information", abstract="Background: Of the 1.6 million transgender and gender-diverse (TGD) people in the United States, approximately 700,000 are youth aged 13-24 years. Many factors make it difficult for TGD young people to identify resources for support and information related to gender identity and medical transition. These range from lack of knowledge to concerns about personal safety in the setting of increased antitransgender violence and legislative limitations on transgender rights. Web-based resources may be able to address some of the barriers to finding information and support, but youth may have difficulty finding relevant content or have concerns about the quality and content of information they find on the internet. Objective: We aim to understand ways TGD young adults look for web-based information about gender and health. Methods: In August 2022, 102 young adults completed a 1-time survey including closed- and open-ended responses. Individuals were recruited through the Prolific platform. Eligibility was restricted to people between the ages of 18-25 years who identified as transgender and were residents of the United States. The initial goal was to recruit 50 White individuals and 50 individuals who identified as Black, indigenous, or people of color. In total, 102 people were eventually enrolled. Results: Young adults reported looking on the internet for information about a broad range of topics related to both medical- and social-gender affirmation. Most participants preferred to obtain information via personal stories. Participants expressed a strong preference for obtaining information from other trans people. Conclusions: There is a need for accessible, expert-informed information for TGD youth, particularly more information generated for the transgender community by members of the community. ", doi="10.2196/45952", url="https://formative.jmir.org/2023/1/e45952", url="http://www.ncbi.nlm.nih.gov/pubmed/37581925" } @Article{info:doi/10.2196/44453, author="Byrne, Catrin and Pfeffer, E. Paul and De Simoni, Anna", title="Experiences of Diagnosis, Symptoms, and Use of Reliever Inhalers in Patients With Asthma and Concurrent Inducible Laryngeal Obstruction or Breathing Pattern Disorder: Qualitative Analysis of a UK Asthma Online Community", journal="J Med Internet Res", year="2023", month="Aug", day="14", volume="25", pages="e44453", keywords="asthma", keywords="breathing pattern disorder", keywords="inducible laryngeal obstruction", keywords="BPD", keywords="ILO", keywords="short-acting beta-agonist", keywords="salbutamol", keywords="breathing disorder", keywords="breathing", keywords="chest tightness", keywords="community", keywords="symptoms", keywords="diagnosis", abstract="Background: Breathing pattern disorders (BPDs) and inducible laryngeal obstruction (ILO) cause similar symptoms to asthma, including dyspnea and chest tightness, with an estimated prevalence of up to one-fifth of patients with asthma. Both conditions can be comorbid with asthma, and there is evidence that they are misdiagnosed and mistreated as asthma. Objective: This study aims to explore whether the symptoms of ILO and BPD were topics of discussion in a UK asthma online health community and patient experiences of diagnosis and treatment, in particular their use of reliever inhalers. Methods: A qualitative thematic analysis was performed with posts from an asthma community between 2018 and 2022. A list of key ILO or BPD symptoms was created from the literature. Posts were identified using the search terms ``blue inhaler'' and ``breath'' and included if describing key symptoms. Discussion threads of included posts were also analyzed. Results: The search retrieved a total of 1127 relevant posts: 1069 written by 302 users and 58 posted anonymously. All participants were adults, except 2 who were parents writing about their children. Sex and age were only available for 1.66\% (5/302; 3 females and 2 males) and 9.93\% (30/302) of participants (27 to 73 years old), respectively. The average number of posts written by each participant was 3.54 (range 1-63). Seven participants wrote >20 posts each. Participants experiencing undiagnosed ILO or BPD symptoms, whether or not comorbid with asthma, expressed frustration with the ``one-size-fits-all'' approach to diagnosis, as many felt that their asthma diagnosis did not fully explain symptoms. Some suspected or were formally diagnosed with BPD or ILO, the latter reporting relief on receiving a diagnosis and appropriate management. Participants showed awareness of their inappropriate salbutamol use or overuse due to lack of effect on symptoms. BPD and ILO symptoms were frequently comorbid with asthma. The asthma online community was a valuable resource: engagement with peers not only brought comfort but also prompted action with some going back to their clinicians and reaching a diagnosis and appropriate management. Conclusions: Undiagnosed ILO and BPD symptoms and lack of effects of asthma treatment were topics of discussion in an asthma online community, caused distress and frustration in participants, and affected their relationship with health care professionals, showing that patients experiencing BPD and ILO have unmet needs. Clinicians' education on BPD and ILO diagnosis and management, as well as increased access to appropriate management options, such as respiratory physiotherapy and speech and language therapy, are warranted particularly in primary care. Qualitative evidence that engagement with the online community resulted in patients taking action going back to their clinicians and reaching a diagnosis of ILO and BPD prompts future research on online peer support from an established online health community as a self-management resource for patients. ", doi="10.2196/44453", url="https://www.jmir.org/2023/1/e44453", url="http://www.ncbi.nlm.nih.gov/pubmed/37578820" } @Article{info:doi/10.2196/47380, author="Nghiem, Jodie and Adler, A. Daniel and Estrin, Deborah and Livesey, Cecilia and Choudhury, Tanzeem", title="Understanding Mental Health Clinicians' Perceptions and Concerns Regarding Using Passive Patient-Generated Health Data for Clinical Decision-Making: Qualitative Semistructured Interview Study", journal="JMIR Form Res", year="2023", month="Aug", day="10", volume="7", pages="e47380", keywords="digital technology", keywords="clinical decision support", keywords="mobile health", keywords="mHealth", keywords="qualitative research", keywords="mental health", keywords="clinician", keywords="perception", keywords="patient-generated health data", keywords="mobile app", keywords="digital app", keywords="wearables", keywords="mobile phone", abstract="Background: Digital health-tracking tools are changing mental health care by giving patients the ability to collect passively measured patient-generated health data (PGHD; ie, data collected from connected devices with little to no patient effort). Although there are existing clinical guidelines for how mental health clinicians should use more traditional, active forms of PGHD for clinical decision-making, there is less clarity on how passive PGHD can be used. Objective: We conducted a qualitative study to understand mental health clinicians' perceptions and concerns regarding the use of technology-enabled, passively collected PGHD for clinical decision-making. Our interviews sought to understand participants' current experiences with and visions for using passive PGHD. Methods: Mental health clinicians providing outpatient services were recruited to participate in semistructured interviews. Interview recordings were deidentified, transcribed, and qualitatively coded to identify overarching themes. Results: Overall, 12 mental health clinicians (n=11, 92\% psychiatrists and n=1, 8\% clinical psychologist) were interviewed. We identified 4 overarching themes. First, passive PGHD are patient driven---we found that current passive PGHD use was patient driven, not clinician driven; participating clinicians only considered passive PGHD for clinical decision-making when patients brought passive data to clinical encounters. The second theme was active versus passive data as subjective versus objective data---participants viewed the contrast between active and passive PGHD as a contrast between interpretive data on patients' mental health and objective information on behavior. Participants believed that prioritizing passive over self-reported, active PGHD would reduce opportunities for patients to reflect upon their mental health, reducing treatment engagement and raising questions about how passive data can best complement active data for clinical decision-making. Third, passive PGHD must be delivered at appropriate times for action---participants were concerned with the real-time nature of passive PGHD; they believed that it would be infeasible to use passive PGHD for real-time patient monitoring outside clinical encounters and more feasible to use passive PGHD during clinical encounters when clinicians can make treatment decisions. The fourth theme was protecting patient privacy---participating clinicians wanted to protect patient privacy within passive PGHD-sharing programs and discussed opportunities to refine data sharing consent to improve transparency surrounding passive PGHD collection and use. Conclusions: Although passive PGHD has the potential to enable more contextualized measurement, this study highlights the need for building and disseminating an evidence base describing how and when passive measures should be used for clinical decision-making. This evidence base should clarify how to use passive data alongside more traditional forms of active PGHD, when clinicians should view passive PGHD to make treatment decisions, and how to protect patient privacy within passive data--sharing programs. Clear evidence would more effectively support the uptake and effective use of these novel tools for both patients and their clinicians. ", doi="10.2196/47380", url="https://formative.jmir.org/2023/1/e47380", url="http://www.ncbi.nlm.nih.gov/pubmed/37561561" } @Article{info:doi/10.2196/46050, author="Figg, Lauren and Addala, Ananta and Jain, Ishaan and Anez, Claudia and Midney, Paul and DeChirico, Corin and Symanski, Colleen and Fitzgerald, C. Brian and Colbert, Kristi and Raymer, Terry and Stockton-Joreteg, Candy and Murphy, Elizabeth and Collins, Leah and Bernstein, Cyd and Hechavarria, Melanie and Sheehan, P. Eleni and Bernier, Angelina and Westen, C. Sarah and Hood, K. Korey and Zaharieva, P. Dessi and Basina, Marina and Cuttriss, Nicolas and Filipp, L. Stephanie and Gurka, J. Matthew and Walker, F. Ashby and Maahs, M. David and Haller, J. Michael and Lal, A. Rayhan", title="The Promising Success of Project Extension for Community Healthcare Outcomes (ECHO) Diabetes: Case Series", journal="JMIR Diabetes", year="2023", month="Aug", day="3", volume="8", pages="e46050", keywords="type 1 diabetes", keywords="care delivery", keywords="primary care", keywords="community health care", abstract="Background: In the United States, there are over 37 million people with diabetes but only 8000 endocrinologists. Therefore, many people with diabetes receive care exclusively from primary care providers (PCPs). To democratize knowledge regarding insulin-requiring diabetes through tele-education, Stanford University and the University of Florida developed Project Extension for Community Healthcare Outcomes (ECHO) Diabetes. Objective: ECHO Diabetes uses a Hub and Spoke model connecting specialists (the ``Hub'') with PCPs (the ``Spokes''). One-hour, weekly sessions include Hub diabetes didactic presentations and Spoke deidentified case presentations. Lessons learned during these sessions target provider knowledge and confidence surrounding diabetes management and patient care. Methods: Spokes were asked to provide short descriptions of people with diabetes whose diabetes management improved directly or indirectly from their providers' participation or their involvement with a Diabetes Support Coach (DSC). We provide a case series to describe individuals and outcomes. Because this study was not a randomized controlled trial and was a prospective observation of patients with the intervention delivered to providers, the trial is not registered in a public trials registry. Results: A case series of 11 people with diabetes was compiled from 10 PCPs and 1 DSC from California and Florida between 2021 and 2022. The principal impact of ECHO Diabetes is the education amplified from PCPs and DSCs to people with diabetes. In all cases, people with diabetes reported increased engagement and improved diabetes management. Several cases reflected increased access to diabetes technology, improvement in glycemic outcomes, and positive trends in mental health measures. Conclusions: This case series elucidates the potential value of the ECHO Diabetes program to people with diabetes who receive their diabetes care from PCPs. Those matched with a DSC saw clinically significant improvements in hemoglobin A1c and mental health outcomes. ", doi="10.2196/46050", url="https://diabetes.jmir.org/2023/1/e46050", url="http://www.ncbi.nlm.nih.gov/pubmed/37535407" } @Article{info:doi/10.2196/43210, author="Delnoij, J. Diana M. and Derks, Meggie and Koolen, Laura and Shekary, Shuka and Suitela, Jozua", title="Using Patient Blogs on Social Media to Assess the Content Validity of Patient-Reported Outcome Measures: Qualitative Analysis of Patient-Written Blogs", journal="JMIR Form Res", year="2023", month="Jul", day="28", volume="7", pages="e43210", keywords="patient stories", keywords="patient-reported outcome measure", keywords="PROM", keywords="social media", keywords="narrative", keywords="patient story", keywords="storytelling", keywords="blogger", keywords="experiential", keywords="experience", keywords="content validity", keywords="content analysis", keywords="qualitative", keywords="cross sectional", keywords="cross-sectional", keywords="chronic disease", keywords="noncommunicable diseases", keywords="NCD", keywords="rheumatoid arthritis", keywords="Parkinson disease, diabetes mellitus", keywords="diabetes", keywords="type II diabetes", keywords="cancer", keywords="breast cancer", keywords="oncology", keywords="International Consortium for Health Outcome Measurement", keywords="ICHOM", keywords="data dictionary", keywords="Health Assessment Questionnaire", keywords="HAQ", keywords="Parkinson Disease Quality of Life Questionnaire", keywords="PDQ", keywords="inductive", keywords="inductive code", abstract="Background: Patient-reported outcome measures (PROMs) are questionnaires that measure patient outcomes related to quality of life, health, and functioning, and are increasingly used to assess important outcomes from the patient's perspective. For PROMs to contribute to better health and better care, it is vital that their content validity be adequate. This requires patient involvement in various steps of PROM development. PROM developers not only recognize the benefits of patient involvement but also report difficulties in recruiting patients and experience patient involvement as time-consuming, logistically challenging, and expensive. Objective: This study seeks to explore different strategies for disclosing the experiential knowledge of patients, namely through analyzing patient stories on the web and social media. The research questions are as follows: (1) how do bloggers living with a disease experience their health-related quality of life? (2) How are these experiences reflected in the domains and items of PROMs related to their disease? Methods: First, a qualitative analysis of blogs written by patients was performed. Second, subthemes and underlying codes resulting from this qualitative analysis were systematically compared with the domains and items in PROMs for the respective diseases that the bloggers write about. Blogs were identified via the Google search engine between December 2019 and May 2021. Results: Bloggers describe a wide range of experiences regarding their physical functioning and health; mental well-being; social network and support; daily life, education, work, and leisure; coping; and self-management. Bloggers also write about their positive and negative experiences with health care delivery, the organization of health care, and health care professionals. In general, patients' experiences as described in blogs were reflected in the domains and items of the PROMs related to their disease. However, except for diabetes mellitus, in all the sets of PROMs, potentially missing topics could be identified. Similarly, with the exception of Parkinson disease, all PROMs address issues that patients did not write about in their blogs and that might therefore be redundant. Conclusions: Web-based patient stories in the form of blogs reveal how people living with a certain disease experience their health-related quality of life. These stories enable analyses of patients' experiences that can be used to assess the content validity of PROMs. This can be a useful step for researchers who are looking for sets of measuring instruments that match their purposes. ", doi="10.2196/43210", url="https://formative.jmir.org/2023/1/e43210", url="http://www.ncbi.nlm.nih.gov/pubmed/37505797" } @Article{info:doi/10.2196/42768, author="McCue, Maggie and Khatib, Rasha and Kabir, Christopher and Blair, Chris and Fehnert, Ben and King, James and Spalding, Alexander and Zaki, Lara and Chrones, Lambros and Roy, Anit and Kemp, E. David", title="User-Centered Design of a Digitally Enabled Care Pathway in a Large Health System: Qualitative Interview Study", journal="JMIR Hum Factors", year="2023", month="Jul", day="26", volume="10", pages="e42768", keywords="depression", keywords="major depressive disorder", keywords="depression management", keywords="patient engagement", keywords="user-centered design", keywords="mobile app", keywords="digital platform", keywords="qualitative research", keywords="shared decision-making", keywords="measurement-based care", keywords="mobile phone", abstract="Background: Major depressive disorder (MDD) is a leading cause of disability worldwide. Management of chronic conditions such as MDD can be improved by enhanced patient engagement, measurement-based care (MBC), and shared decision-making (SDM). A user-centered design approach can improve the understanding of the patient journey and care team workflows and thus aid the development of digital health care innovations optimized for the needs of patients living with MDD and their primary care teams. Objective: This study aims to use qualitative research methods for the user-centered design of a digitally enabled MDD care platform, PathwayPlatform, intended to enhance patient engagement, MBC, and SDM. Methods: Insights were gathered through 2 stages of qualitative interviews by a study team with expertise in qualitative research and user-centered design methods. Thematic analysis was used to generate an overarching understanding of a set of shared experiences, thoughts, or behaviors across a broad qualitative data set, including transcripts of interviews, to allow both inductive and deductive insights to emerge. Thematic analysis of interviews was supported by Dedoose (SocioCultural Research Consultants, LLC), a qualitative data analysis software tool that enables systematized coding. Findings and insights were presented based on code frequency, salience, and relevance to the research project. Results: In stage 1, interviews were conducted with 20 patients living with MDD and 15 health care providers from September 2018 to January 2019 to understand the experiences with and perceptions about the initial functionality of the Pathway app while also exploring the perceptions about potential additional features and functionality. Feedback about care team workflows and treatment approaches was collected in stage-2 interviews with 36 health care providers at 8 primary care sites. Inductive and deductive thematic analyses revealed several themes related to app functionality, patient-provider engagement, workflow integration, and patient education. Both patients and their care teams perceived the remote tracking of patient-reported outcomes via digital tools to be clinically useful and reliable and to promote MBC and SDM. However, there was emphasis on the need to enhance the flow of real-time data shared with the care team, improve trend visualizations, and integrate the data within the existing clinical workflow and educational programs for patients and their care teams. User feedback was incorporated into the iterative development of the Pathway app. Conclusions: Ongoing communication with patients living with MDD and their care teams provided an opportunity for user-centric developmental iterations of the Pathway Platform. Key insights led to further development of the patient-facing and care team--facing visit preparation features, collaborative goal-setting and goal-tracking features, patient-reported outcome summaries, and trend visualizations. The result is an enhanced digital platform with the potential to improve treatment outcomes and provide patients living with MDD additional support throughout their treatment journey. ", doi="10.2196/42768", url="https://humanfactors.jmir.org/2023/1/e42768", url="http://www.ncbi.nlm.nih.gov/pubmed/37494099" } @Article{info:doi/10.2196/46627, author="Bristol, A. Alycia and Litchman, Michelle and Berg, Cynthia and Grigorian, Ernest and Small, Denise and Glazener, Ashley and Jones, Christopher and Allen, A. Nancy", title="Using Continuous Glucose Monitoring and Data Sharing to Encourage Collaboration Among Older Adults With Type 1 Diabetes and Their Care Partners: Qualitative Descriptive Study", journal="JMIR Nursing", year="2023", month="Jul", day="26", volume="6", pages="e46627", keywords="type 1 diabetes", keywords="continuous glucose monitoring", keywords="care partner", keywords="communication", keywords="data sharing", keywords="caregiver", keywords="caregiving", keywords="diabetes", keywords="diabetic", keywords="type 1", keywords="glucose", keywords="dyad", keywords="older adult", keywords="elder", keywords="telehealth", keywords="collaboration", keywords="insulin", keywords="endocrinology", keywords="endocrine", keywords="self-efficacy", keywords="health education", keywords="insulin pump", keywords="tele", keywords="hypoglycemia", keywords="hyperglycemia", abstract="Background: Persons with diabetes use continuous glucose monitoring (CGM) to self-manage their diabetes. Care partners (CPs) frequently become involved in supporting persons with diabetes in the management of their diabetes. However, persons with diabetes and CP dyads may require more communication and problem-solving skills regarding how to share and respond to CGM data. Objective: The purpose of this study was to describe the experiences of persons with diabetes and CPs who participated in the Share ``plus'' intervention, which addresses dyadic communication strategies, problem-solving, and action planning to promote sharing of CGM data among the dyad. Methods: Ten dyads participated in the Share ``plus'' telehealth intervention. Participants were interviewed during and after the Share ``plus'' intervention. Thematic analysis was used to analyze interview data. Results: During postsession interviews, dyads described feeling a sense of shared responsibility yet viewed the persons with diabetes as ultimately responsible for the disease. Additionally, dyads shared that communication patterns improved and were able to recognize the negative aspects of previously established communication patterns. Dyads reported communication focused on hypoglycemia episodes while also differing in the frequency they reviewed CGM data and set alerts. Overall, dyads expressed positive reactions to the Share ``plus'' intervention. Conclusions: Share ``plus'' was helpful in promoting positive CGM-related communication among dyads and encouraged more CP support. CPs play an important role in supporting older adults with type 1 diabetes. Communication strategies help support dyad involvement in CGM data sharing and self-management among persons with diabetes. ", doi="10.2196/46627", url="https://nursing.jmir.org/2023/1/e46627", url="http://www.ncbi.nlm.nih.gov/pubmed/37494110" } @Article{info:doi/10.2196/46590, author="Veldmeijer, Lars and Terlouw, Gijs and Van Os, Jim and Van Dijk, Olga and Van 't Veer, Job and Boonstra, Nynke", title="The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review", journal="JMIR Ment Health", year="2023", month="Jul", day="25", volume="10", pages="e46590", keywords="design approaches", keywords="innovation", keywords="psychiatry", keywords="mental health care", keywords="involvement", keywords="service users", keywords="people with lived experience", keywords="cocreation", keywords="mobile phone", abstract="Background: Mental health care faces challenges that not only necessitate innovation but also require the involvement of service users and people with lived experience in developing and evaluating mental health care services. As the development of digital interventions is becoming more prevalent, design approaches are increasingly finding their way into mental health. There is evidence that these approaches can successfully integrate user experience into mental health services. However, there is no clear overview of the studies conducted and the lessons learned concerning the involvement of service users and people with lived experience. Objective: In this systematic review, we aimed to provide an overview of the involvement of service users and people with lived experience in mental health care services through design approaches and to synthesize the advantages of design approaches in mental health care. Methods: The following 5 databases were searched for relevant abstracts: PsycINFO, PubMed, Web of Science, Scopus, and Embase. In addition, 2 health design journal archives, Design for Health and The Journal of Health Design, were searched. To categorize the results, we collected the reported added value from the included articles and conducted a thematic synthesis in which the themes were developed from the retrieved data. The themes were discussed, revised, and checked until saturation was achieved. Results: We included and categorized 33 papers. Most studies involved service users, primarily adults, and used various design approaches. Most of these studies aimed to design or evaluate digital interventions. Service users and people with lived experience were involved in different roles but never as decision makers. Studies that used co-design approaches exhibited the highest levels of involvement. Various added values were reported, including tailoring and testing interventions and digital interventions, improving engagement and collaboration, gathering the needs of stakeholders, and empowering participants as resourceful actors. The challenges reported were maintaining participants' continued participation throughout the study, managing the iterative nature of design, providing a safe space, balancing insights from design and medical science, and navigating design processes in medical environments. Conclusions: This systematic review provides an overview of the studies that used design approaches to involve service users and people with lived experience in mental health care innovation. Design approaches have advantages in mental health care innovation, offering added value and having manageable challenges. Future studies using design approaches in mental health care should involve participants as partners and decision makers and report on collaboration in a systematic and clear manner. ", doi="10.2196/46590", url="https://mental.jmir.org/2023/1/e46590", url="http://www.ncbi.nlm.nih.gov/pubmed/37490326" } @Article{info:doi/10.2196/46044, author="Son, H. Elisa and Nahm, Eun-Shim", title="Adult Patients' Experiences of Using a Patient Portal With a Focus on Perceived Benefits and Difficulties, and Perceptions on Privacy and Security: Qualitative Descriptive Study", journal="JMIR Hum Factors", year="2023", month="Jul", day="25", volume="10", pages="e46044", keywords="patient portal", keywords="patient engagement", keywords="user review", keywords="content analysis", keywords="qualitative", keywords="perception", keywords="privacy", keywords="security", abstract="Background: Patient portals can facilitate patient engagement in care management. Driven by national efforts over the past decade, patient portals are being implemented by hospitals and clinics nationwide. Continuous evaluation of patient portals and reflection of feedback from end users across care settings are needed to make patient portals more user-centered after the implementation. Objective: The aim of this study was to investigate the lived experience of using a patient portal in adult patients recruited from a variety of care settings, focusing on their perceived benefits and difficulties of using the patient portal, and trust and concerns about privacy and security. Methods: This qualitative descriptive study was part of a cross-sectional digital survey research to examine the comprehensive experience of using a patient portal in adult patients recruited from 20 care settings from hospitals and clinics of a large integrated health care system in the mid-Atlantic area of the United States. Those who had used a patient portal offered by the health care system in the past 12 months were eligible to participate in the survey. Data collected from 734 patients were subjected to descriptive statistics and content analysis. Results: The majority of the participants were female and non-Hispanic White with a mean age of 53.1 (SD 15.34) years. Content analysis of 1589 qualitative comments identified 22 themes across 4 topics: beneficial aspects (6 themes) and difficulties (7 themes) in using the patient portal; trust (5 themes) and concerns (4 themes) about privacy and security of the patient portal. Most of the participants perceived the patient portal functions as beneficial for communicating with health care teams and monitoring health status and care activities. At the same time, about a quarter of them shared difficulties they experienced while using those functions, including not getting eMessage responses timely and difficulty finding information in the portal. Protected log-in process and trust in health care providers were the most mentioned reasons for trusting privacy and security of the patient portal. The most mentioned reason for concerns about privacy and security was the risk of data breaches such as hacking attacks and identity theft. Conclusions: This study provides an empirical understanding of the lived experience of using a patient portal in adult patient users across care settings with a focus on the beneficial aspects and difficulties in using the patient portal, and trust and concerns about privacy and security. Our study findings can serve as a valuable reference for health care institutions and software companies to implement more user-centered, secure, and private patient portals. Future studies may consider targeting other patient portal programs and patients with infrequent or nonuse of patient portals. ", doi="10.2196/46044", url="https://humanfactors.jmir.org/2023/1/e46044", url="http://www.ncbi.nlm.nih.gov/pubmed/37490316" } @Article{info:doi/10.2196/44914, author="Howell, Doris and Bryant Lukosius, Denise and Avery, Jonathan and Santaguida, Athina and Powis, Melanie and Papadakos, Tina and Addario, Vincenzo and Lovas, Mike and Kukreti, Vishal and Haase, Kristen and Mayo, J. Samantha and Papadakos, Janet and Moradian, Saeed and Krzyzanowska, K. Monika", title="A Web-Based Cancer Self-Management Program (I-Can Manage) Targeting Treatment Toxicities and Health Behaviors: Human-Centered Co-design Approach and Cognitive Think-Aloud Usability Testing", journal="JMIR Cancer", year="2023", month="Jul", day="21", volume="9", pages="e44914", keywords="web-based program", keywords="self-management", keywords="cancer treatment", keywords="digital technology", keywords="co-design", keywords="usability", abstract="Background: Patients with cancer require adequate preparation in self-management of treatment toxicities to reduce morbidity that can be achieved through well-designed digital technologies that are developed in co-design with patients and end users. Objective: We undertook a user-centered co-design process in partnership with patients and other knowledge end users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management program (I-Can Manage). The specific study aims addressed in 2 phases were to (1) identify from the perspective of patients with cancer and clinicians the desired content, features, and functionalities for an online self-management education and support (SMES) program to enable patient self-management of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered, health literate design principles and co-design processes; and (3) evaluate usability of the I-Can Manage prototype through user-centered testing (phase 2). Methods: We developed the I-Can Manage program using multiperspective data sources and based on humanistic and co-design principles with end users engaged through 5 phases of development. We recruited adult patients with lung, colorectal, and lymphoma cancer receiving systemic treatments from ambulatory clinics in 2 regional cancer programs for the qualitative inquiry phase. The design of the program was informed by data from qualitative interviews and focus groups, persona and journey mapping, theoretical underpinnings of social cognitive learning theory, and formalized usability testing using a cognitive think-aloud process and user satisfaction survey. A co-design team comprising key stakeholders (human design experts, patients/caregiver, clinicians, knowledge end users, and e-learning and digital design experts) was involved in the developmental process. We used a cognitive think-aloud process to test usability and participants completed the Post-Study System Usability Questionnaire (PSSUQ). Results: In the initial qualitative inquiry phase, 16 patients participated in interviews and 19 clinicians participated in interviews or focus groups and 12 key stakeholders participated in a persona journey mapping workshop to inform development of the program prototype. The I-Can Manage program integrates evidence-based information and strategies for the self-management of treatment toxicities and health-promoting behaviors in 6 e-learning modules (lay termed ``chapters''), starting with an orientation to self-management. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of goals and action plans were integrated across chapters. Patient participants (n=5) with different cancers, gender, and age worked through the program in the human factors laboratory using a cognitive think-aloud process and all key stakeholders reviewed each chapter of the program and approved revisions. Results of the PSSUQ (mean total score: 3.75) completed following the cognitive think-aloud process (n=5) suggest patient satisfaction with the usability of I-Can Manage. Conclusions: The I-Can Manage program has the potential for activating patients in self-management of cancer and treatment toxicities but requires testing in a larger randomized controlled trial. ", doi="10.2196/44914", url="https://cancer.jmir.org/2023/1/e44914", url="http://www.ncbi.nlm.nih.gov/pubmed/37477968" } @Article{info:doi/10.2196/44733, author="Pang, Cheong-Iao Patrick and Munsie, Megan and Chang, Shanton and Tanner, Claire and Walker, Christine", title="Participatory Design and Evaluation of the ``Stem Cells Australia'' Website for Delivering Complex Health Knowledge: Mixed Methods Study", journal="J Med Internet Res", year="2023", month="Jul", day="20", volume="25", pages="e44733", keywords="stem cells", keywords="health websites", keywords="health information--seeking behavior", keywords="complex health information", keywords="participatory design", keywords="public health", abstract="Background: The internet has become a commonly used information source for people seeking to understand their health care options. However, inconsistent representation about what stem cell treatments are available and from whom, coupled with the lack of transparency about what has been shown to work or is even safe, can distract and mislead users. Given these challenges, there is a need to develop effective evidence-based tools for delivering information about health care options involving stem cells. Objective: A need to redesign an existing website in Australia was identified to provide trustworthy information about stem cell research and to counter misinformation. Using a participatory design approach to generate an understanding of what information users need for stem cell treatments, the Stem Cells Australia website serves as a case study for the development and evaluation of websites delivering complex messages about science and health. Methods: This study comprised 3 steps. First, a focus group and several one-on-one interviews with a purposive sample of users (n=12) were conducted to identify their needs and requirements. Second, we designed a new version of the website based on findings from the focus group and interviews. Finally, for evaluating the participatory design process, we collected 180 days of Google Analytics data for both the original and redesigned versions (90 days for each) and compared their differences using 2-sample z tests. Results: The feedback from participants was grouped into 3 themes---needed and unwanted information, how and where to obtain information, and their information preferences. These were translated into requirements for rebuilding the website. The redesigned version reached users in other continents, despite the daily numbers of users (?61.2\%; P<.001) and sessions (?61.7\%; P<.001) decreasing. The redesigned version also showed substantial decrease in daily bounce rate (?97.2\%; P<.001), significant increase in the daily average of page reads per session (+110.8\%; P<.001), and long daily average for session duration (+22.9\%; P=.045). Navigation flow analysis showed more traffic toward web pages related to health conditions in the redesigned version. Conclusions: Websites about stem cell research need to provide content for vulnerable global audiences. Participatory design that addresses knowledge gaps and information needs can produce better performance and engagement, which can be evaluated using Google Analytics, a common web analytics tool used by many websites. Learnings for improving the metrics regarding website identity, research updates, and clinical trials are concluded, which can inform the future design of websites seeking to engage users and provide reliable and accessible science and health information including but not limited to stem cell research and therapies. ", doi="10.2196/44733", url="https://www.jmir.org/2023/1/e44733", url="http://www.ncbi.nlm.nih.gov/pubmed/37471121" } @Article{info:doi/10.2196/45974, author="Simola, Saija and H{\"o}rhammer, Iiris and Xu, Yuhui and B{\"a}rk{\aa}s, Annika and Fagerlund, Johansen Asbj{\o}rn and Hagstr{\"o}m, Josefin and Holmroos, Mari and H{\"a}gglund, Maria and Johansen, Alise Monika and Kane, Bridget and Kharko, Anna and Scandurra, Isabella and Kujala, Sari", title="Patients' Experiences of a National Patient Portal and Its Usability: Cross-Sectional Survey Study", journal="J Med Internet Res", year="2023", month="Jun", day="30", volume="25", pages="e45974", keywords="patient portal", keywords="perceived usability", keywords="System Usability Scale", keywords="electronic health record", keywords="patient experiences", keywords="patient-accessible electronic health records", keywords="national survey", abstract="Background: Patient portals not only provide patients with access to electronic health records (EHRs) and other digital health services, such as prescription renewals, but they can also improve patients' self-management, engagement with health care professionals (HCPs), and care processes. However, these benefits depend on patients' willingness to use patient portals and, ultimately, their experiences with the usefulness and ease of use of the portals. Objective: This study aimed to investigate the perceived usability of a national patient portal and the relationship of patients' very positive and very negative experiences with perceived usability. The study was aimed to be the first step in developing an approach for benchmarking the usability of patient portals in different countries. Methods: Data were collected through a web-based survey of the My Kanta patient portal's logged-in patient users in Finland from January 24, 2022, to February 14, 2022. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale (SUS) score. Open-ended questions asked the patients about their positive and negative experiences with the patient portal. The statistical analysis included multivariate regression, and the experience narratives were analyzed using inductive content analysis. Results: Of the 1,262,708 logged-in patient users, 4719 responded to the survey, giving a response rate of 0.37\%. The patient portal's usability was rated as good, with a mean SUS score of 74.3 (SD 14.0). Reporting a very positive experience with the portal was positively associated with perceived usability ($\beta$=.51; P<.001), whereas reporting a very negative experience was negatively associated with perceived usability ($\beta$=?1.28; P<.001). These variables explained 23\% of the variation in perceived usability. The information provided and a lack of information were the most common positive and negative experiences. Furthermore, specific functionalities, such as prescription renewal and the ease of using the patient portal, were often mentioned as very positive experiences. The patients also mentioned negative emotions, such as anger and frustration, as part of their very negative experiences. Conclusions: The study offers empirical evidence about the significant role of individual experiences when patients are evaluating the usability of patient portals. The results suggest that positive and negative experiences provide relevant information that can be used for improving the patient portal's usability. Usability should be improved so that patients receive information efficiently, easily, and quickly. Respondents would also appreciate interactive features in the patient portal. ", doi="10.2196/45974", url="https://www.jmir.org/2023/1/e45974", url="http://www.ncbi.nlm.nih.gov/pubmed/37389909" } @Article{info:doi/10.2196/44024, author="Grimm, Michael and Link, Elena and Albrecht, Martina and Czerwinski, Fabian and Baumann, Eva and Suhr, Ralf", title="Exploring Functions and Predictors of Digital Health Engagement Among German Internet Users: Survey Study", journal="J Med Internet Res", year="2023", month="Jun", day="28", volume="25", pages="e44024", keywords="eHealth", keywords="mobile health", keywords="digital health engagement", keywords="health information seeking", keywords="self-monitoring", keywords="digital health care", keywords="mobile phone", abstract="Background: Digital health engagement may serve many support functions, such as providing access to information; checking or evaluating one's state of health; and tracking, monitoring, or sharing health data. Many digital health engagement behaviors are associated with the potential to reduce inequalities in information and communication. However, initial studies suggest that health inequalities may persist in the digital realm. Objective: This study aimed to explore the functions of digital health engagement by describing how frequently respective services are used for a range of purposes and how these purposes can be categorized from the users' perspective. This study also aimed to identify the prerequisites for successfully implementing and using digital health services; therefore, we shed light on the predisposing, enabling, and need factors that may predict digital health engagement for different functions. Methods: Data were gathered via computer-assisted telephone interviews during the second wave of the German adaption of the Health Information National Trends Survey in 2020 (N=2602). The weighted data set allowed for nationally representative estimates. Our analysis focused on internet users (n=2001). Engagement with digital health services was measured by their reported use for 19 different purposes. Descriptive statistics showed the frequency with which digital health services were used for these purposes. Using a principal component analysis, we identified the underlying functions of these purposes. Using binary logistic regression models, we analyzed which predisposing factors (age and sex), enabling factors (socioeconomic status, health- and information-related self-efficacy, and perceived target efficacy), and need factors (general health status and chronic health condition) can predict the use of the distinguished functions. Results: Digital health engagement was most commonly linked to acquiring information and less frequently to more active or interactive purposes such as sharing health information with other patients or health professionals. Across all purposes, the principal component analysis identified 2 functions. Information-related empowerment comprised items on acquiring health information in various forms, critically assessing one's state of health, and preventing health problems. In total, 66.62\% (1333/2001) of internet users engaged in this behavior. Health care--related organization and communication included items on patient-provider communication and organizing health care. It was applied by 52.67\% (1054/2001) of internet users. Binary logistic regression models showed that the use of both functions was determined by predisposing factors (female and younger age) and certain enabling factors (higher socioeconomic status) and need factors (having a chronic condition). Conclusions: Although a large share of German internet users engage with digital health services, predictors show that existing health-related disparities prevail in the digital realm. To make use of the potential of digital health services, fostering digital health literacy at different levels, especially in vulnerable groups, is key. ", doi="10.2196/44024", url="https://www.jmir.org/2023/1/e44024", url="http://www.ncbi.nlm.nih.gov/pubmed/37379058" } @Article{info:doi/10.2196/46575, author="Brehon, Katelyn and MacIsaac, Rob and Bhatia, Zahra and Buck, Taryn and Charbonneau, Rebecca and Crochetiere, Steven and Donia, Scott and Daoust, Jason and Ho, Chester and Kainth, Hardeep and Loewen, Janee and Lorch, Brandice and Mastrodimos, Kiesha and Neunzig, Brittney and Papathanassoglou, Elizabeth and Parmar, Rajvir and Pohar Manhas, Kiran and Tenove, Terry and Velji, Elysha and Loyola-Sanchez, Adalberto", title="Outcomes of Implementing a Webinar-Based Strategy to Improve Spinal Cord Injury Knowledge and Community Building: Convergent Mixed Methods Study", journal="JMIR Rehabil Assist Technol", year="2023", month="Jun", day="23", volume="10", pages="e46575", keywords="spinal cord injury", keywords="telehealth", keywords="webinars", keywords="mixed methods", keywords="implementation", abstract="Background: COVID-19 disrupted services received by persons with spinal cord injury (SCI) worldwide. The International Disability Alliance declared the need for a disability-inclusive response to the COVID-19 crisis, as decreased access to health care services for individuals living with varying levels of function was unacceptable. As a result, an SCI community in Canada created a novel webinar-based strategy aimed at improving access to self-management information for people living with SCI and other stakeholders. However, although telehealth practices have previously been used effectively in SCI management and rehabilitation, little to no scholarship has investigated the outcomes of implementing a webinar-based telehealth strategy in this population. Objective: This study aims to understand the outcomes of implementing the webinar series. Specifically, the authors aimed to determine the reach of the series; understand its impact on social connectedness, perceptions of disability, and overall quality of interactions among persons with SCI, their families, service providers, and the public at large; and explore the long-term sustainability of the initiative. Methods: The authors implemented a community-based participatory strategy to define a convergent mixed methods design to triangulate qualitative and quantitative data collected simultaneously. Quantitative methods included pop-up questions administered during the live webinars, surveys administered following webinars, and an analysis of YouTube analytics. Qualitative methods included semistructured interviews with persons with SCI and health care providers who attended at least one webinar. The results were integrated, following methods adapted from Creswell and Clark. Results: A total of 234 individuals attended at least 1 of the 6 webinars that took place during the 6-month study period. In total, 13.2\% (31/234) of the participants completed the postwebinar survey, and 23\% (7/31) participated in the semistructured interviews. The reach of the webinar series was mainly to persons with SCI, followed by health professionals, with most of them living in urban areas. The topics sexuality and research were the most viewed on YouTube. The knowledge disseminated during the webinars was mainly perceived as valid and useful, related to the fact that the presentation format involved people with lived experience and clinical experts. The webinars did not necessarily help build a new extended community of people involved in SCI but helped strengthen the existing community of people with SCI in Alberta. The webinar positively influenced the perceptions of normality and disability regarding people with SCI. The webinar format was perceived as highly usable and accessible. Conclusions: The webinar series was associated with improved participant knowledge of what is possible to achieve after an SCI and their perceptions of disability. The long-term implementation of this initiative is feasible, but further considerations to increase its reach to rural areas and ensure the integration of diverse individuals should be taken. ", doi="10.2196/46575", url="https://rehab.jmir.org/2023/1/e46575", url="http://www.ncbi.nlm.nih.gov/pubmed/37351945" } @Article{info:doi/10.2196/42843, author="Monkman, Helen and Griffith, Janessa and MacDonald, Leah and Lesselroth, Blake", title="Consumers' Needs for Laboratory Results Portals: Questionnaire Study", journal="JMIR Hum Factors", year="2023", month="Jun", day="12", volume="10", pages="e42843", keywords="consumer health information", keywords="user-centered design", keywords="clinical laboratory information systems", keywords="laboratory test result", keywords="patient portal", keywords="laboratory result", keywords="facilitator", keywords="barrier", keywords="information system", keywords="questionnaire", keywords="usability", abstract="Background: Over the last decade, there has been an increase in the number of health care consumers (ie, patients, citizens, and laypeople) with access to their laboratory results through portals. However, many portals are not designed with the consumer in mind, which can limit communication effectiveness and consumer empowerment. Objective: We aimed to study design facilitators and barriers affecting consumer use of a laboratory results portal. We sought to identify modifiable design attributes to inform future interface specifications and improve patient safety. Methods: A web-based questionnaire with open- and closed-ended items was distributed to consumers in British Columbia, Canada. Open-ended items with affinity diagramming and closed-ended questions with descriptive statistics were analyzed. Results: Participants (N=30) preferred reviewing their laboratory results through portals rather than waiting to see their provider. However, respondents were critical of the interface design (ie, interface usability, information completeness, and display clarity). Scores suggest there are display issues impacting communication that require urgent attention. Conclusions: There are modifiable usability, content, and display issues associated with laboratory results portals that, if addressed, could arguably improve communication effectiveness, patient empowerment, and health care safety. ", doi="10.2196/42843", url="https://humanfactors.jmir.org/2023/1/e42843", url="http://www.ncbi.nlm.nih.gov/pubmed/37307049" } @Article{info:doi/10.2196/44630, author="Auton, Alice and Zaman, Sameer and Padayachee, Yorissa and Samways, W. Jack and Quaife, M. Nicholas and Sweeney, Mark and Tenorio, Indira and Linton, F. Nick W. and Cole, D. Graham and Peters, S. Nicholas and Mayet, Jamil and Barton, Carys and Plymen, Carla", title="Smartphone-Based Remote Monitoring for Chronic Heart Failure: Mixed Methods Analysis of User Experience From Patient and Nurse Perspectives", journal="JMIR Nursing", year="2023", month="Jun", day="6", volume="6", pages="e44630", keywords="heart failure", keywords="health-related quality of life", keywords="mHealth", keywords="nurse specialist", keywords="patient engagement", keywords="self-management", keywords="self-care", abstract="Background: Community-based management by heart failure specialist nurses (HFSNs) is key to improving self-care in heart failure with reduced ejection fraction. Remote monitoring (RM) can aid nurse-led management, but in the literature, user feedback evaluation is skewed in favor of the patient rather than nursing user experience. Furthermore, the ways in which different groups use the same RM platform at the same time are rarely directly compared in the literature. We present a balanced semantic analysis of user feedback from patient and nurse perspectives of Luscii, a smartphone-based RM strategy combining self-measurement of vital signs, instant messaging, and e-learning. Objective: This study aims to (1) evaluate how patients and nurses use this type of RM (usage type), (2) evaluate patients' and nurses' user feedback on this type of RM (user experience), and (3) directly compare the usage type and user experience of patients and nurses using the same type of RM platform at the same time. Methods: We performed a retrospective usage type and user experience evaluation of the RM platform from the perspective of both patients with heart failure with reduced ejection fraction and the HFSNs using the platform to manage them. We conducted semantic analysis of written patient feedback provided via the platform and a focus group of 6 HFSNs. Additionally, as an indirect measure of tablet adherence, self-measured vital signs (blood pressure, heart rate, and body mass) were extracted from the RM platform at onboarding and 3 months later. Paired 2-tailed t tests were used to evaluate differences between mean scores across the 2 timepoints. Results: A total of 79 patients (mean age 62 years; 35\%, 28/79 female) were included. Semantic analysis of usage type revealed extensive, bidirectional information exchange between patients and HFSNs using the platform. Semantic analysis of user experience demonstrates a range of positive and negative perspectives. Positive impacts included increased patient engagement, convenience for both user groups, and continuity of care. Negative impacts included information overload for patients and increased workload for nurses. After the patients used the platform for 3 months, they showed significant reductions in heart rate (P=.004) and blood pressure (P=.008) but not body mass (P=.97) compared with onboarding. Conclusions: Smartphone-based RM with messaging and e-learning facilitates bilateral information sharing between patients and nurses on a range of topics. Patient and nurse user experience is largely positive and symmetrical, but there are possible negative impacts on patient attention and nurse workload. We recommend RM providers involve patient and nurse users in platform development, including recognition of RM usage in nursing job plans. ", doi="10.2196/44630", url="https://nursing.jmir.org/2023/1/e44630", url="http://www.ncbi.nlm.nih.gov/pubmed/37279054" } @Article{info:doi/10.2196/43551, author="Stringer, Eleah and Lum, J. Julian and Livergant, Jonathan and Kushniruk, W. Andre", title="Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users", journal="JMIR Hum Factors", year="2023", month="Jun", day="5", volume="10", pages="e43551", keywords="decision support", keywords="decision aid", keywords="app design", keywords="oncology", keywords="head and neck cancer", keywords="patient information needs", keywords="qualitative", abstract="Background: Patients with head and neck cancer (HNC) carry a clinically significant symptom burden, have alterations in function (eg, impaired ability to chew, swallow, and talk), and decrease in quality of life. Furthermore, treatment impacts social activities and interactions as patients report reduced sexuality and shoulder the highest rates of depression across cancer types. Patients suffer undue anxiety because they find the treatment incomprehensible, which is partially a function of limited, understandable information. Patients' perceptions of having obtained adequate information prior to and during treatment are predictive of positive outcomes. Providing patient-centered decision support and utilizing visual images may increase understanding of treatment options and associated risks to improve satisfaction with their decision and consultation, while reducing decisional conflict. Objective: This study aims to gather requirements from survivors of HNC on the utility of key visual components to be used in the design of an electronic decision aid (eDA) to assist with decision-making on treatment options. Methods: Informed by a scoping review on eDAs for patients with HNC, screens and visualizations for an eDA were created and then presented to 12 survivors of HNC for feedback on their utility, features, and further requirements. The semistructured interviews were video-recorded and thematically analyzed to inform co-design recommendations. Results: A total of 9 themes were organized into 2 categories. The first category, eDAs and decision support, included 3 themes: familiarity with DAs, support of concept, and versatility of the prototype. The second category, evaluation of mock-up, contained 6 themes: reaction to the screens and visualizations, favorite features, complexity, preference for customizability, presentation device, and suggestions for improvement. Conclusions: All participants felt an eDA, used in the presence of their oncologist, would support a more thorough and transparent explanation of treatment or augment the quality of education received. Participants liked the simple design of the mock-ups they were shown but, ultimately, desired customizability to adapt the eDA to their individual information needs. This research highlights the value of user-centered design, rooted in acceptability and utility, in medical health informatics, recognizing cancer survivors as the ultimate knowledge holders. This research highlights the value of incorporating visuals into technology-based innovations to engage all patients in treatment decisions. ", doi="10.2196/43551", url="https://humanfactors.jmir.org/2023/1/e43551", url="http://www.ncbi.nlm.nih.gov/pubmed/37276012" } @Article{info:doi/10.2196/47659, author="Thielmann, C. Rosa R. L. and Hoving, Ciska and Cals, L. Jochen W. and Crutzen, Rik", title="The Effects of Online Access to General Practice Medical Records Perceived by Patients: Longitudinal Survey Study", journal="J Med Internet Res", year="2023", month="Jun", day="2", volume="25", pages="e47659", keywords="electronic health records", keywords="personal health records", keywords="medical records", keywords="patient access to records", keywords="patient portals", keywords="patient participation", keywords="informed decision-making", keywords="patient empowerment", abstract="Background: Patient online access to medical records is assumed to facilitate patient empowerment and advance patient-centered health care. However, to date, the actual effects of online access to medical records perceived by patients and other outcomes are insufficiently empirically tested. Objective: This study aimed to investigate the effects of online access to medical records on patient empowerment, informed decision-making, and the patient-provider relationship perceived by patients. Methods: A nationwide, 2-wave, longitudinal survey study was conducted among Dutch adults (N=2402). Linear regression analyses were performed. In model 1, the perceived effects of online access to medical records (measured at T1 [first measurement; July 2021]) on 16 outcomes (measured at T2 [second measurement; January 2022]), which were associated with the use of online access to general practice medical records in previous research, were investigated. Model 2 included sociodemographic factors and patient characteristics as confounders. Results: Users indicated more strongly than nonusers that online access to medical records would increase their participation in health care, improve the relationship with their general practitioner, and support informed decision-making. These results were robust when adjusted for the influence of confounders. Effect sizes were very small, with unstandardized regression coefficients (B) ranging between ?0.39 and 0.28. Higher digital and health literacy were associated with higher ratings of almost all effects. Conclusions: Online access to medical records has the potential to empower patients and foster informed decision-making among patients. The effects in this study were small but might grow over time. Other factors, such as the attitude of general practitioners toward online access to medical records, might moderate these effects. The results indicate that the potential benefits of online access to medical records might be unevenly distributed. We suggest future exploration of the conditions under which online access to medical records can improve health care system functioning and efficiency without increasing health inequality. ", doi="10.2196/47659", url="https://www.jmir.org/2023/1/e47659", url="http://www.ncbi.nlm.nih.gov/pubmed/37266981" } @Article{info:doi/10.2196/43125, author="Ek, Charlott and Liljegren, Per-Daniel and Edin-Liljegren, Anette", title="Patients With Cardiovascular Disease Revisiting Specialist Physicians via Remote Treatment: Interview Study of Experiences", journal="JMIR Hum Factors", year="2023", month="Jun", day="1", volume="10", pages="e43125", keywords="remote treatment", keywords="sparsely populated region", keywords="telemedicine", keywords="content analysis", keywords="experiences", keywords="person-centered care", keywords="rural", keywords="eHealth", keywords="mobile phone", abstract="Background: Access to health care for an aging population with growing needs presents major challenges in northern Sweden's sparsely populated regions. Few people, the lack of professionals, and long distances make it difficult to provide health care on equitable terms according to the Swedish legislation. Remote treatment (RT) using information and communication technology has been suggested to overcome these difficulties, and person-centered care (PCC) is a desired philosophy to improve the quality of health care. However, there is scarce knowledge about how patients experience RT meetings. Objective: This study aimed to describe the experiences of patients with cardiovascular disease revisiting specialist physicians via RT guided by a PCC perspective in northern Sweden's sparsely populated regions. Methods: A qualitative study was conducted based on interviews with 8 patients with cardiovascular disease revisiting their physician through RT, from a digital health room to a health care center or from a health care center to a hospital. The interviews were recorded, transcribed verbatim, and analyzed using inductive content analysis. The results are discussed from a PCC perspective. Results: The analysis resulted in 6 categories: good accessibility, safety with good relationships, proximity and distance with technology, habit and quality of the technology facilitating the meeting, cherishing personal integrity, and participation in own care. These categories were interpreted as the theme, participation and relationships are important for good and close care via RT. Conclusions: The study shows that participation and relationships are important for good and close care via RT. To improve the quality of an RT meeting, PCC can be applied but needs to be extended to the digital domain---electronic PCC, especially the communication component, as it is the most salient difference from a face-to-face meeting. Important factors that should be considered before, during, and after the RT meeting have been identified. ", doi="10.2196/43125", url="https://humanfactors.jmir.org/2023/1/e43125", url="http://www.ncbi.nlm.nih.gov/pubmed/37261892" } @Article{info:doi/10.2196/43981, author="Desveaux, Laura and Wu, Kelly and Rouleau, Genevi{\`e}ve and Srinivasan, Diya and Azavedo, Rhea and Dang Nguyen, Marlena and Martin, Danielle and Steele Gray, Carolyn", title="Building Compassionate Experience Through Compassionate Action: Qualitative Behavioral Analysis", journal="JMIR Form Res", year="2023", month="May", day="31", volume="7", pages="e43981", keywords="technology-based care", keywords="compassion", keywords="primary care", keywords="behavior change", keywords="communication competency", keywords="continuing professional development", keywords="qualitative", abstract="Background: The acceleration of technology-based primary care during the COVID-19 pandemic outpaced the ability to understand whether and how it impacts care delivery and outcomes. As technology-based care continues to evolve, focusing on the core construct of compassion in a primary care context will help ensure high-quality patient care and increased patient autonomy and satisfaction. The ability to successfully operationalize the use of technology in patient-clinician interactions hinges on understanding not only how compassionate care is experienced in this context but also how clinicians can create it. Objective: The objectives of this study were to understand whether and how compassionate behaviors are experienced in technology-based primary care interactions and identify the individual and contextual drivers that influence whether and how these behaviors occur. Methods: We conducted a series of qualitative one-on-one interviews with primary care physicians, nurses, and patients. Qualitative data were initially analyzed using an inductive thematic analysis approach to identify preliminary themes for each participant group independently. We then looked across participant groups to identify areas of alignment and distinction. Descriptions of key behaviors that participants identified as elements of a compassionate interaction and descriptions of key drivers of these behaviors were inductively coded and defined at this stage. Results: A total of 74 interviews were conducted with 40 patients, 20 nurses, and 14 primary care physicians. Key behaviors that amplified the experience of compassion included asking the patient's modality preference, using video to establish technology-based presence, sharing the screen, and practicing effective communication. Participants' knowledge or skills as well as their beliefs and emotions influenced whether or not these behaviors occurred. Contextual elements beyond participants' control influenced technology-based interactions, including resource access, funding structures, culture, regulatory standards, work structure, societal influence, and patient characteristics and needs. A high-yield, evidence-based approach to address the identified drivers of compassion-focused clinician behavior includes a combination of education, training, and enablement. Conclusions: Much of the patient experience is influenced by clinician behavior; however, clinicians need a supportive system and adequate supports to evolve new ways of working to create the experience of compassionate care. The current state of technology-based care operationalization has led to widespread burnout, societal pressure, and shifting expectations of both clinicians and the health system more broadly, threatening the ability to deliver compassionate care. For clinicians to exhibit compassionate behaviors, they need more than just adequate supports; they also need to receive compassion from and experience the humanity of their patients. ", doi="10.2196/43981", url="https://formative.jmir.org/2023/1/e43981", url="http://www.ncbi.nlm.nih.gov/pubmed/37256678" } @Article{info:doi/10.2196/45641, author="Judson, J. Timothy and Subash, Meera and Harrison, D. James and Yeager, Jan and Williams, M. Aim{\'e}e and Grouse, K. Carrie and Byron, Maria", title="Patient Perceptions of e-Visits: Qualitative Study of Older Adults to Inform Health System Implementation", journal="JMIR Aging", year="2023", month="May", day="26", volume="6", pages="e45641", keywords="e-visit", keywords="patient portal message", keywords="digital health tool", keywords="patient portal", keywords="perception", keywords="attitude", keywords="qualitative", keywords="e-consult", keywords="remote care", keywords="remote visit", keywords="remote consult", keywords="vulnerable", keywords="messaging", keywords="telehealth", keywords="telemedicine", keywords="eHealth", abstract="Background: Electronic visits (e-visits) are billable, asynchronous patient-initiated messages that require at least five minutes of medical decision-making by a provider. Unequal use of patient portal tools like e-visits by certain patient populations may worsen health disparities. To date, no study has attempted to qualitatively assess perceptions of e-visits in older adults. Objective: In this qualitative study, we aimed to understand patient perceptions of e-visits, including their perceived utility, barriers to use, and care implications, with a focus on vulnerable patient groups. Methods: We conducted a qualitative study using in-depth structured individual interviews with patients from diverse backgrounds to assess their knowledge and perceptions surrounding e-visits as compared with unbilled portal messages and other visit types. We used content analysis to analyze interview data. Results: We conducted 20 interviews, all in adults older than 65 years. We identified 4 overarching coding categories or themes. First, participants were generally accepting of the concept of e-visits and willing to try them. Second, nearly two-thirds of the participants voiced a preference for synchronous communication. Third, participants had specific concerns about the name ``e-visit'' and when to choose this type of visit in the patient portal. Fourth, some participants indicated discomfort using or accessing technology for e-visits. Financial barriers to the use of e-visits was not a common theme. Conclusions: Our findings suggest that older adults are generally accepting of the concept of e-visits, but uptake may be limited due to their preference for synchronous communication. We identified several opportunities to improve e-visit implementation. ", doi="10.2196/45641", url="https://aging.jmir.org/2023/1/e45641", url="http://www.ncbi.nlm.nih.gov/pubmed/37234031" } @Article{info:doi/10.2196/44587, author="Goldman, Nina and Willem, Theresa and Buyx, Alena and Zimmermann, M. Bettina", title="Practical Benefits, Challenges, and Recommendations on Social Media Recruitment: Multi-Stakeholder Interview Study", journal="J Med Internet Res", year="2023", month="May", day="22", volume="25", pages="e44587", keywords="social media", keywords="recruitment", keywords="benefits", keywords="challenges", keywords="recommendations", keywords="medical study", keywords="interview", keywords="research study", keywords="strategy", abstract="Background: The increasing use of social media opens new opportunities for recruiting patients for research studies. However, systematic evaluations indicate that the success of social media recruitment in terms of cost-effectiveness and representativeness depends on the type of study and its purpose. Objective: This study aims to explore the practical benefits and challenges of recruiting study participants with social media in the context of clinical and nonclinical studies and provide a summary of expert advice on how to conduct social media--based recruitment. Methods: We conducted semistructured interviews with 6 patients with hepatitis B who use social media and 30 experts from the following disciplines: (1) social media researchers or social scientists, (2) practical experts for social media recruitment, (3) legal experts, (4) ethics committee members, and (5) clinical researchers. The interview transcripts were analyzed using thematic analysis. Results: We found diverging expert opinions regarding the challenges and benefits of social media recruitment for research studies in four domains: (1) resources needed, (2) representativeness, (3) web-based community building, and (4) privacy considerations. Moreover, the interviewed experts provided practical advice on how to promote a research study via social media. Conclusions: Even though recruitment strategies should always be sensitive to individual study contexts, a multiplatform approach (recruiting via several different social media platforms) with mixed-methods recruitment (web-based and offline recruitment channels) is the most beneficial recruitment strategy for many research studies. The different recruitment methods complement each other and may contribute to improving the reach of the study, the recruitment accrual, and the representativeness of the sample. However, it is important to assess the context- and project-specific appropriateness and usefulness of social media recruitment before designing the recruitment strategy. ", doi="10.2196/44587", url="https://www.jmir.org/2023/1/e44587", url="http://www.ncbi.nlm.nih.gov/pubmed/37213177" } @Article{info:doi/10.2196/46673, author="Olesen, Linnet Mette and Rossen, Sine and J{\o}rgensen, Rikke and Langballe Udbj{\o}rg, Line and Hansson, Helena", title="Usefulness of a Digitally Assisted Person-Centered Care Intervention: Qualitative Study of Patients' and Nurses' Experiences in a Long-term Perspective", journal="JMIR Nursing", year="2023", month="May", day="18", volume="6", pages="e46673", keywords="digital technology", keywords="digital nursing", keywords="digitally assisted guided self-determination", keywords="empowerment", keywords="self-management", keywords="person-centered care", keywords="qualitative", keywords="service design", keywords="patient care", keywords="nurse", keywords="quality of life", keywords="interview", keywords="web-based questionnaire", keywords="functionality", keywords="support", keywords="training", keywords="implementation", keywords="self-determination", keywords="autonomy", keywords="agency", keywords="person centered", keywords="patient centered", keywords="client focus", keywords="gynecology", keywords="oncology", keywords="health knowledge", keywords="health care professional", keywords="health care provider", keywords="HCP", keywords="mobile phone", abstract="Background: Person-centered care responsive to individual preferences, needs, and values is recognized as an important aspect of high-quality health care, and patient empowerment is increasingly viewed as a central core value of person-centered care. Web-based interventions aimed at empowerment report a beneficial effect on patient empowerment and physical activity; however, there is limited information available on barriers, facilitators, and user experiences. A recent review of the effect of digital self-management support tools suggests a beneficial effect on the quality of life in patients with cancer. On the basis of an overall philosophy of empowerment, guided self-determination is a person-centered intervention that uses preparatory reflection sheets to help achieve focused communication between patients and nurses. The intervention was adapted into a digital version called digitally assisted guided self-determination (DA-GSD) hosted by the Sundhed DK website that can be delivered face-to-face, via video, or by the combination of the 2 methods. Objective: We aimed to investigate the experiences of nurses, nurse managers, and patients of using DA-GSD in 2 oncology departments and 1 gynecology department over a 5-year implementation period from 2018 to 2022. Methods: This qualitative study was inspired by action research comprising the responses of 17 patients to an open-ended question on their experience of specific aspects of DA-GSD in a web questionnaire, 14 qualitative semistructured interviews with nurses and patients who initially completed the web questionnaire, and transcripts of meetings held between the researchers and nurses during the implementation of the intervention. The thematic analysis of all data was done using NVivo (QSR International). Results: The analysis generated 2 main themes and 7 subthemes that reflect conflicting perspectives and greater acceptability of the intervention among the nurses over time owing to better familiarity with the increasingly mature technology. The first theme was the different experiences and perspectives of nurses and patients concerning barriers to using DA-GSD and comprised 4 subthemes: conflicting perspectives on the ability of patients to engage with DA-GSD and how to provide it, conflicting perspectives on DA-GSD as a threat to the nurse-patient relationship, functionality of DA-GSD and available technical equipment, and data security. The other theme was what influenced the increased acceptability of DA-GSD among the nurses over time and comprised 3 subthemes: a re-evaluation of the nurse-patient relationship; improved functionality of DA-GSD; and supervision, experience, patient feedback, and a global pandemic. Conclusions: The nurses experienced more barriers to DA-GSD than the patients did. Acceptance of the intervention increased over time among the nurses in keeping with the intervention's improved functionality, additional guidance, and positive experiences, combined with patients finding it useful. Our findings emphasize the importance of supporting and training nurses if new technologies are to be implemented successfully. ", doi="10.2196/46673", url="https://nursing.jmir.org/2023/1/e46673", url="http://www.ncbi.nlm.nih.gov/pubmed/37200076" } @Article{info:doi/10.2196/41740, author="Thiessen, Maclean and Raffin Bouchal, Shelly and Tang, A. Patricia and Sinclair, Shane", title="Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design", journal="JMIR Cancer", year="2023", month="May", day="17", volume="9", pages="e41740", keywords="health information behavior", keywords="neoplasm", keywords="theory", keywords="internet", keywords="information needs", keywords="adults", abstract="Background: The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development. Objective: The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design. Methods: Adults (?18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures. Results: A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19\% each). In total, 67\% (14/21) of patients, 29\% (6/21) of informal caregivers, and 5\% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google). Conclusions: Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research. ", doi="10.2196/41740", url="https://cancer.jmir.org/2023/1/e41740", url="http://www.ncbi.nlm.nih.gov/pubmed/37195760" } @Article{info:doi/10.2196/43180, author="Jahnke, R. Hannah and Rubin-Miller, Lily and Henrich, Natalie and Moss, Christa and Shah, Neel and Peahl, Alex", title="Association Between the Use of a Digital Health Platform During Pregnancy and Helping Users Avoid Emergency and In-Person Care: Retrospective Observational Study", journal="J Med Internet Res", year="2023", month="May", day="15", volume="25", pages="e43180", keywords="pregnancy", keywords="telehealth", keywords="web-based care", keywords="emergency room", keywords="value-based care", keywords="digital care", keywords="prenatal care", abstract="Background: Almost one-third of pregnant people visit the emergency room during pregnancy. Although some emergency care is necessary, gaps in patient education and inaccessibility of preventive services have been identified as key reasons for high-cost, low-value care in pregnancy. Digital platforms present a promising solution for providing resources to supplement routine prenatal care, thereby reducing the use of low-value in-person services. Objective: This study aimed to describe the relationship between the use of Maven and in-person care avoidance (emergency room or office visits) during pregnancy. Maven is a digital prenatal health platform that supplements routine prenatal care. Maven offers educational content (articles, videos, and classes), care coordination (through a care advocate), and provider services (web-based appointments and communication with providers) designed to complement prenatal care. Specifically, the aims of this study were to examine whether the use of Maven is associated with in-person care avoidance overall and whether improvements in pregnancy-related knowledge facilitate in-person care avoidance. To assess aim 2, we tested if the use of Maven is associated with improvements in self-reported understanding of warning signs and medically accurate information and if self-reported understanding of medically accurate information and warning signs is associated with in-person care avoidance in a population of Maven users. Methods: In this retrospective study, we used adjusted logistic regression to examine the relationship between digital platform use, avoidance of in-person care, and the platform's influence on pregnancy-related knowledge (learning medically accurate information and recognizing warning signs). Demographics, medical history, and in-person care avoidance were self-reported. Results: Of the 5263 users, 280 (5.32\%) reported that Maven helped them avoid in-person care during pregnancy. More users who reported avoiding in-person care also reported that the digital platform helped them understand warning signs (231/280, 82.5\%) and learned medically accurate information (185/280, 66.1\%). In the adjusted models, all modes of digital service use (assessed as quartiles) were associated with avoiding in-person care in a dose-response manner (eg, web-based provider appointments: Q2 adjusted odds ratio [aOR] 1.57, 95\% CI 1.00-2.41; Q3 aOR 2.53, 95\% CI 1.72-3.72; Q4 aOR 5.26, 95\% CI 3.76-7.42). Users were more likely to avoid in-person care if they reported that Maven helped them recognize warning signs (aOR 3.55, 95\% CI 2.60-4.94) or learn medically accurate information (aOR 2.05, 95\% CI 1.59-2.67). Conclusions: These results suggest that digital platforms can be effective in helping patients to avoid in-person care. The educational pathway suggests that digital platforms can be particularly effective in helping patients recognize warning signs and learn medically accurate information, which may help them avoid in-person care by recognizing when in-person care is medically appropriate. Future work is needed to assess other pathways through which digital resources can support pregnant people and improve perinatal care use. ", doi="10.2196/43180", url="https://www.jmir.org/2023/1/e43180", url="http://www.ncbi.nlm.nih.gov/pubmed/37184930" } @Article{info:doi/10.2196/44385, author="Auxier, Jennifer and Savolainen, T. Kaisu and Bender, Miriam and Rahmani, M. Amir and Sarhaddi, Fatemeh and Azimi, Iman and Axelin, M. Anna", title="Exploring Access as a Process of Adaptation in a Self-Monitoring Perinatal eHealth System: Mixed Methods Study From a Sociomaterial Perspective", journal="JMIR Form Res", year="2023", month="May", day="15", volume="7", pages="e44385", keywords="patient engagement", keywords="eHealth", keywords="pregnancy", keywords="motivation", keywords="pregnant", keywords="maternal", keywords="cocreation", keywords="participatory", keywords="codesign", keywords="use pattern", keywords="usage", keywords="self-monitor", keywords="sociomaterial", abstract="Background: The development and quality assurance of perinatal eHealth self-monitoring systems is an upcoming area of inquiry in health science. Building patient engagement into eHealth development as a core component has potential to guide process evaluation. Access, 1 attribute of patient engagement, is the focus of study here. Access to eHealth self-monitoring programs has the potential to influence pregnancy health and wellness outcomes. Little is known about how pregnant users' ability to obtain resources is influenced by their own adaptive activities and the mediating activities of eHealth systems during the process of real-world testing of these systems. Objective: Here, we examine the patient engagement process of access occurring during the adaptation of eHealth self-monitoring use from a sociomaterial perspective. Methods: In this mixed methods convergent evaluation design, we interviewed women about perceptions of the adaptation process of using an eHealth self-monitoring system. Deductive analysis was conducted guided by the definition of access as an attribute of patient engagement. After initial qualitative and quantitative data collection and analysis, participants were spilt based on their level of use of the eHealth system (physical wear time of self-monitoring device). Content analysis was then conducted according to user group, using a conceptual matrix developed from ontological perspectives of sociomateriality. Results: Pregnant users' adaptive activities and the mediation activities of the eHealth system represent a cocreation process that resulted in user group--specific characteristics of accessing and using the system. The high- and low-use groups experienced different personal adaptation and eHealth mediation during this process of cocreation. Differences were noted between high- and low-use groups, with the high-use group giving attention to developing skills in recording and interpreting data and the low-use group discussing the manual adding of activities to the system and how the system worked best for them when they used it in their mother tongue. Conclusions: A cocreation process between pregnant users and the eHealth system was identified, illustrating access as a useful core component of perinatal eHealth self-monitoring systems. Researchers and clinicians can observe reasons for why pregnant users access eHealth systems in unique ways based on their personal preferences, habits, and values. Mediation activities of the eHealth system and the different user adaptive activities represent a cocreation process between the users and the eHealth system that is necessary for the personalization of perinatal eHealth systems. ", doi="10.2196/44385", url="https://formative.jmir.org/2023/1/e44385", url="http://www.ncbi.nlm.nih.gov/pubmed/37184929" } @Article{info:doi/10.2196/47773, author="Dorsey, Chelsea and Arora, M. Vineet and Carter, Keme", title="Fixing Flexner: Disrupting and Rebuilding Academic Medicine for Women of Color to Lead", journal="J Med Internet Res", year="2023", month="May", day="10", volume="25", pages="e47773", keywords="Flexner Report", keywords="diversity", keywords="leadership", keywords="minority tax", keywords="Flexner", keywords="color", keywords="diverse", keywords="medical education", keywords="academia", keywords="women", keywords="minority", keywords="academic", doi="10.2196/47773", url="https://www.jmir.org/2023/1/e47773", url="http://www.ncbi.nlm.nih.gov/pubmed/37163317" } @Article{info:doi/10.2196/43917, author="Lee, W. Jarrett G. and Lee, Kyungyeon and Lee, Bongshin and Choi, Soyoung and Seo, JooYoung and Choe, Kyoung Eun", title="Personal Health Data Tracking by Blind and Low-Vision People: Survey Study", journal="J Med Internet Res", year="2023", month="May", day="4", volume="25", pages="e43917", keywords="personal health data", keywords="self-tracking", keywords="blind and low vision", keywords="survey", keywords="consumer health information", keywords="mobile phone", abstract="Background: Personal health technologies, including wearable tracking devices and mobile apps, have great potential to equip the general population with the ability to monitor and manage their health. However, being designed for sighted people, much of their functionality is largely inaccessible to the blind and low-vision (BLV) population, threatening the equitable access to personal health data (PHD) and health care services. Objective: This study aims to understand why and how BLV people collect and use their PHD and the obstacles they face in doing so. Such knowledge can inform accessibility researchers and technology companies of the unique self-tracking needs and accessibility challenges that BLV people experience. Methods: We conducted a web-based and phone survey with 156 BLV people. We reported on quantitative and qualitative findings regarding their PHD tracking practices, needs, accessibility barriers, and work-arounds. Results: BLV respondents had strong desires and needs to track PHD, and many of them were already tracking their data despite many hurdles. Popular tracking items (ie, exercise, weight, sleep, and food) and the reasons for tracking were similar to those of sighted people. BLV people, however, face many accessibility challenges throughout all phases of self-tracking, from identifying tracking tools to reviewing data. The main barriers our respondents experienced included suboptimal tracking experiences and insufficient benefits against the extended burden for BLV people. Conclusions: We reported the findings that contribute to an in-depth understanding of BLV people's motivations for PHD tracking, tracking practices, challenges, and work-arounds. Our findings suggest that various accessibility challenges hinder BLV individuals from effectively gaining the benefits of self-tracking technologies. On the basis of the findings, we discussed design opportunities and research areas to focus on making PHD tracking technologies accessible for all, including BLV people. ", doi="10.2196/43917", url="https://www.jmir.org/2023/1/e43917", url="http://www.ncbi.nlm.nih.gov/pubmed/37140967" } @Article{info:doi/10.2196/39857, author="Morena, Nina and Zelt, Nicholas and Nguyen, Diana and Dionne, Emilie and Rentschler, A. Carrie and Greyson, Devon and Meguerditchian, N. Ari", title="The Use of Web-Based Patient Reviews to Assess Medical Oncologists' Competency: Mixed Methods Sequential Explanatory Study", journal="JMIR Form Res", year="2023", month="May", day="4", volume="7", pages="e39857", keywords="web-based patient reviews", keywords="medical oncology", keywords="cancer care", keywords="CanMEDS", keywords="RateMDs", keywords="web-based physician rating", keywords="physician rating websites", abstract="Background: Patients increasingly use web-based evaluation tools to assess their physicians, health care teams, and overall medical experience. Objective: This study aimed to evaluate the extent to which the standardized physician competencies of the CanMEDS Framework are present in web-based patient reviews (WPRs) and to identify patients' perception of important physician qualities in the context of quality cancer care. Methods: The WPRs of all university-affiliated medical oncologists in midsized cities with medical schools in the province of Ontario (Canada) were collected. Two reviewers (1 communication studies researcher and 1 health care professional) independently assessed the WPRs according to the CanMEDS Framework and identified common themes. Comment scores were then evaluated to identify $\kappa$ agreement rates between the reviewers, and a descriptive quantitative analysis of the cohort was completed. Following the quantitative analysis, an inductive thematic analysis was performed. Results: This study identified 49 actively practicing university-affiliated medical oncologists in midsized urban areas in Ontario. A total of 473 WPRs reviewing these 49 physicians were identified. Among the CanMEDS competencies, those defining the roles of medical experts, communicators, and professionals were the most prevalent (303/473, 64\%; 182/473, 38\%; and 129/473, 27\%, respectively). Common themes in WPRs include medical skill and knowledge, interpersonal skills, and answering questions (from the patient to the physician). Detailed WPRs tend to include the following elements: experience and connection; discussion and evaluation of the physician's knowledge, professionalism, interpersonal skills, and punctuality; in positive reviews, the expression of feelings of gratitude and a recommendation; and in negative reviews, discouragement from seeking the physician's care. Patients' perception of medical skills is less specific than their perception of interpersonal qualities, although medical skills are the most commented-on element of care in WPRs. Patients' perception of interpersonal skills (listening, compassion, and overall caring demeanor) and other experiential phenomena, such as feeling rushed during appointments, is often specific and detailed. Details about a physician's interpersonal skills or ``bedside manner'' are highly perceived, valued, and shareable in an WPR context. A small number of WPRs reflected a distinction between the value of medical skills and that of interpersonal skills. The authors of these WPRs claimed that for them, a physician's medical skills and competence are more important than their interpersonal skills. Conclusions: CanMEDS roles and competencies that are explicitly patient facing (ie, those directly experienced by patients in their interactions with physicians and through the care that physicians provide) are the most likely to be present and reported on in WPRs. The findings demonstrate the opportunity to learn from WPRs, not simply to discern physicians' popularity but to grasp what patients may expect from their physicians. In this context, WPRs can represent a method for the measurement and assessment of patient-facing physician competency. ", doi="10.2196/39857", url="https://formative.jmir.org/2023/1/e39857", url="http://www.ncbi.nlm.nih.gov/pubmed/37140959" } @Article{info:doi/10.2196/46259, author="Garc{\'i}a Abejas, Abel and Serra Trull{\'a}s, Adri{\`a} and Sobral, Ana Maria and Canelas, Daniel and Leite Costa, F{\'a}bio and Salvador Verges, {\`A}ngels", title="Improving the Understanding and Managing of the Quality of Life of Patients With Lung Cancer With Electronic Patient-Reported Outcome Measures: Scoping Review", journal="J Med Internet Res", year="2023", month="May", day="3", volume="25", pages="e46259", keywords="lung cancer", keywords="electronic patient-reported outcome measures", keywords="ePROMs", keywords="health-related quality of life", keywords="sickness impact profile", keywords="quality improvement", keywords="review", abstract="Background: Electronic patient-reported outcome measures (ePROMs) are essential to clinical practice and research. The growth of eHealth technologies has provided unprecedented opportunities to collect information systematically through ePROMs. Although they are widely used in scientific research, more evidence is needed to determine their use and implementation in daily clinical practice. For example, when diagnosed, patients with lung cancer are at an advanced stage of the disease. This entails tremendous burden because of high mortality and losses in the different dimensions of the human being. In this case, monitoring symptoms and other outcomes help improve the patient's quality of life. Objective: ePROMs offered unprecedented opportunities to collect information systematically. Our goal was to demonstrate that ePROMs are more useful in controlling patient symptoms, lung cancer, and overall survival than their alternatives, such as nonelectronic PROMs. Methods: This exploratory review considered articles published between 2017 and 2022 identified through searches of PubMed, Scopus, Cochrane, CINAHL, and PsycINFO. We found 5097 articles; after removing the duplicates, we reduced them to 3315. After reading the summary, we were left with 56. Finally, after applying the exclusion criteria, we reviewed 12. The 5-step framework by Arksey and O'Malley was used to refine the initial search results with the following research questions: Do ePROMs help physician-patient communication? To what extent do they improve decision-making? Are institutions and their digitization policies barriers to or facilitators of this process? and What else is needed for routine implementation? Results: This review included 12 articles. We found that ePROMs are an integrative and facilitative communication tool, highlighting their importance in the relationship between palliative care and medical oncology. ePROMs help assess patient symptoms and functionality more accurately and facilitate clinical decision-making. In addition, it allows for more precise predictions of overall patient survival and the adverse effects of their treatments. The main institutional obstacles are the initial investment, which can be costly, and the data protection policy. However, enablers included better funding through the development of telemedicine, support from institutional leaders to overcome resistance to change, and transparent policies to ensure the safe and secure use of ePROMs. Conclusions: Routine collection of remote ePROMs is an effective and valuable strategy for providing real-time clinical feedback. In addition, it provides satisfaction to patients and professionals. Optimizing ePROMs in patients with lung cancer leads to a more accurate view of health outcomes and ensures quality patient follow-up. It also allows us to stratify patients based on their morbidity, creating specific follow-ups for their needs. However, data privacy and security are concerns when using ePROMs to ensure compliance with local entities. At least four barriers were identified: cost, complex programming within health systems, safety, and social and health literacy. ", doi="10.2196/46259", url="https://www.jmir.org/2023/1/e46259", url="http://www.ncbi.nlm.nih.gov/pubmed/37021695" } @Article{info:doi/10.2196/39852, author="Crawford, Rebecca and Sikirica, Slaven and Morrison, Ross and Cappelleri, C. Joseph and Russell-Smith, Alexander and Shah, Richa and Chadwick, Helen and Doward, Lynda", title="The Patient Experience of Acute Lymphoblastic Leukemia and Its Treatment: Social Media Review", journal="JMIR Cancer", year="2023", month="May", day="1", volume="9", pages="e39852", keywords="acute lymphoblastic leukemia", keywords="health-related quality of life", keywords="qualitative research", keywords="social media", keywords="leukemia", keywords="lymphoblastic", keywords="adult", keywords="disease", keywords="treatment", keywords="therapy", keywords="symptoms", keywords="independence", keywords="functioning", keywords="social", keywords="well-being", keywords="emotional", abstract="Background: Adult patients with acute lymphoblastic leukemia (ALL) report substantial disease- and treatment-related impacts on their health-related quality of life (HRQOL). Patient-reported information (PRI) shared on social media may provide a distinct opportunity to understand the patient experience outside of formal research contexts and help inform the development of novel therapies. Objective: This qualitative social media review aimed to assess PRI shared on social media websites to gain a better understanding of the symptom, HRQOL, and treatment impacts on individuals with ALL. Methods: We identified English-language posts on 3 patient advocacy websites (Patient Power, The Patient Story, and Leukaemia Care) and YouTube that included PRI about experiences with ALL or ALL treatments shared by adults (aged ?18 years) with a self-reported ALL diagnosis. Patients' demographic and disease characteristics were extracted from posts (where available), and the posts were analyzed thematically. A network analysis was conducted to delineate possible associations among ALL symptoms, HRQOL impacts, and treatment-related symptoms and impacts. Results: Of the 935 social media posts identified, 63 (7\%) met the review criteria, including 40 (63\%) videos, 5 (8\%) comments posted in response to videos, and 18 (29\%) blog posts. The 63 posts were contributed by 41 patients comprised of 21 (51\%) males, 18 females (44\%), and 2 (5\%) whose gender was not reported. Among the patients, 13 (32\%) contributed >1 source of data. Fatigue (n=20, 49\%), shortness of breath (n=13, 32\%), and bruising (n=12, 29\%) were the symptoms prior to treatment most frequently discussed by patients. Patients also reported impacts on personal relationships (n=26, 63\%), psychological and emotional well-being (n=25, 61\%), and work (n=16, 39\%). Although inpatient treatment reportedly restricted patients' independence and social functioning, it also provided a few patients with a sense of safety. Patients frequently relied on their doctors to drive their treatment decisions but were also influenced by family members. The network analysis indicated that disease-related symptoms were primarily associated with patients' physical functioning, activities of daily living, and ability to work, while treatment-related symptoms were primarily associated with emotional well-being. Conclusions: This social media review explored PRI through a thematic analysis of patient-contributed content on patient advocacy websites and YouTube to identify and contextualize emergent themes in patient experiences with ALL and its treatments. To our knowledge, this is the first study to leverage this novel tool to generate new insights into patients' experiences with ALL. Patients' social media posts suggest that inpatient care for ALL is associated with restricted independence and social functioning. However, inpatient care also provided a sense of safety for some patients. Studies such as this one that capture patients' experiences in their own words are valuable tools to further our knowledge of patient outcomes with ALL. ", doi="10.2196/39852", url="https://cancer.jmir.org/2023/1/e39852", url="http://www.ncbi.nlm.nih.gov/pubmed/37126376" } @Article{info:doi/10.2196/44462, author="Johansen, Kristoffer Simon and Kanstrup, Marie Anne and Haseli, Kian and Stenmo, Hildebrandt Visti and Thomsen, Laust Janus and Rathleff, Skovdal Michael", title="Exploring User Visions for Modeling mHealth Apps Toward Supporting Patient-Parent-Clinician Collaboration and Shared Decision-making When Treating Adolescent Knee Pain in General Practice: Workshop Study", journal="JMIR Hum Factors", year="2023", month="Apr", day="28", volume="10", pages="e44462", keywords="mobile health", keywords="mHealth", keywords="design", keywords="patient physician relationship", keywords="collaborative care", keywords="shared decision-making", keywords="adolescents", keywords="parents", keywords="knee pain", keywords="patellofemoral pain", keywords="Osgood Schlatter", keywords="musculoskeletal", keywords="general practice", keywords="primary care", keywords="mobile phone", abstract="Background: Long-standing knee pain is one of the most common reasons for adolescents (aged 10-19 years) to consult general practice. Generally, 1 in 2 adolescents will continue to experience pain after 2 years, but exercises and self-management education can improve the prognosis. However, adherence to exercises and self-management education interventions remains poor. Mobile health (mHealth) apps have the potential for supporting adolescents' self-management, enhancing treatment adherence, and fostering patient-centered approaches. However, it remains unclear how mHealth apps should be designed to act as tools for supporting individual and collaborative management of adolescents' knee pain in a general practice setting. Objective: The aim of the study was to extract design principles for designing mHealth core features, which were both sufficiently robust to support adolescents' everyday management of their knee pain and sufficiently flexible to act as enablers for enhancing patient-parent collaboration and shared decision-making. Methods: Overall, 3 future workshops were conducted with young adults with chronic knee pain since adolescence, parents, and general practitioners (GPs). Each workshop followed similar procedures, using case vignettes and design cards to stimulate discussions, shared construction of knowledge and elicit visions for mHealth designs. Young adults and parents were recruited via social media posts targeting individuals in Northern Jutland. GPs were recruited via email and cold calling. Data were transcribed and analyzed thematically using NVivo (QSR International) coding software. Extracted themes were synthesized in a matrix to map tensions in the collaborative space and inform a conceptual model for designing mHealth core-features to support individual and collaborative management of knee pain. Results: Overall, 38\% (9/24) young adults with chronic knee pain since adolescence, 25\% (6/24) parents, and 38\% (9/24) GPs participated in the workshops. Data analysis revealed how adolescents, parents, and clinicians took on different roles within the collaborative space, with different tasks, challenges, and information needs. In total, 5 themes were identified: adolescents as explorers of pain and social rules; parents as supporters, advocates and enforcers of boundaries; and GPs as guides, gatekeepers, and navigators or systemic constraints described participants' roles; collaborative barriers and tensions referred to the contextual elements; and visions for an mHealth app identified beneficial core features. The synthesis informed a conceptual model, outlining 3 principles for consolidating mHealth core features as enablers for supporting role negotiation, limiting collaborative tensions, and facilitating shared decision-making. Conclusions: An mHealth app for treating adolescents with knee pain should be designed to accommodate multiple users, enable them to shift between individual management decision-making, take charge, and engage in role negotiation to inform shared decision-making. We identified 3 silver-bullet principles for consolidating mHealth core features as enablers for negotiation by supporting patient-GP collaboration, supporting transitions, and cultivating the parent-GP alliance. ", doi="10.2196/44462", url="https://humanfactors.jmir.org/2023/1/e44462", url="http://www.ncbi.nlm.nih.gov/pubmed/37115609" } @Article{info:doi/10.2196/40043, author="El Sherif, Reem and Pluye, Pierre and Paquet, Virginie and Ibekwe, Fidelia and Grad, Roland", title="How People Use Web-Based Parenting Information to Support Others in Their Social Circle: Qualitative Descriptive Study", journal="JMIR Pediatr Parent", year="2023", month="Apr", day="28", volume="6", pages="e40043", keywords="consumer health information", keywords="information seeking behavior", keywords="child development", keywords="child health", keywords="information outcomes", keywords="health information", keywords="digital health", keywords="parenting", keywords="web-based information", abstract="Background: Almost two-thirds of the North American population have searched for health information on the web, and the majority report searching on behalf of someone else in their social circle, a phenomenon referred to as proxy seeking. Little is known about how proxy seekers use web-based health information and the outcomes they experience. Objective: The main aim of this study was to explore why proxy seekers used a parenting website on behalf of parents in their social circle and the outcomes they reported. Methods: A qualitative descriptive study was conducted in the context of a partnership with a web-based parenting resource to explore the contexts and motivations for proxy web-based health information seeking, use of information, and subsequent outcomes. A total of 14 participants who self-identified as family members, friends of parents of young children, or professionals who worked with young children were interviewed, and a thematic analysis was conducted. Results: The following 4 reasons for proxy seeking were uncovered: for reassurance, out of personal curiosity, as part of a professional role, or following an explicit request from the parents. Information was used to provide informational support for parents or material support for a child. Positive outcomes of using the information and some of the resulting interpersonal tensions were described. Conclusions: This study provides an in-depth look at proxy seeking behavior and outcomes among users of a web-based parenting resource. ", doi="10.2196/40043", url="https://pediatrics.jmir.org/2023/1/e40043", url="http://www.ncbi.nlm.nih.gov/pubmed/37115603" } @Article{info:doi/10.2196/35682, author="Mousavi, Seyedmostafa and Tannenbaum Greenberg, Dana and Ndjabou{\'e}, Ruth and Greiver, Michelle and Drescher, Olivia and Chipenda Dansokho, Selma and Boutin, Denis and Chouinard, Jean-Marc and Dostie, Sylvie and Fenton, Robert and Greenberg, Marley and McGavock, Jonathan and Najam, Adhiyat and Rekik, Monia and Weisz, Tom and Willison, J. Donald and Durand, Audrey and Witteman, O. Holly and ", title="The Influence of Age, Sex, and Socioeconomic Status on Glycemic Control Among People With Type 1 and Type 2 Diabetes in Canada: Patient-Led Longitudinal Retrospective Cross-sectional Study With Multiple Time Points of Measurement", journal="JMIR Diabetes", year="2023", month="Apr", day="27", volume="8", pages="e35682", keywords="adolescent", keywords="adult", keywords="cohort studies", keywords="co-design", keywords="diabetes mellitus", keywords="diabetes mellitus type 1", keywords="diabetes mellitus type 2", keywords="glycated hemoglobin", keywords="menopause", keywords="participatory medicine", keywords="patient engagement", keywords="postmenopause", keywords="premenopause", keywords="public and patient involvement", keywords="sex factors", keywords="socioeconomic disparities in health", keywords="user design", abstract="Background: Clinical guidelines for most adults with diabetes recommend maintaining hemoglobin A1c (HbA1c) levels ?7\% (?53 mmol/mol) to avoid microvascular and macrovascular complications. People with diabetes of different ages, sexes, and socioeconomic statuses may differ in their ease of attaining this goal. Objective: As a team of people with diabetes, researchers, and health professionals, we aimed to explore patterns in HbA1c results among people with type 1 or type 2 diabetes in Canada. Our research question was identified by people living with diabetes. Methods: In this patient-led retrospective cross-sectional study with multiple time points of measurement, we used generalized estimating equations to analyze the associations of age, sex, and socioeconomic status with 947,543 HbA1c results collected from 2010 to 2019 among 90,770 people living with type 1 or type 2 diabetes in Canada and housed in the Canadian National Diabetes Repository. People living with diabetes reviewed and interpreted the results. Results: HbA1c results ?7.0\% represented 30.5\% (male people living with type 1 diabetes), 21\% (female people living with type 1 diabetes), 55\% (male people living with type 2 diabetes) and 59\% (female people living with type 2 diabetes) of results in each subcategory. We observed higher HbA1c values during adolescence, and for people living with type 2 diabetes, among people living in lower income areas. Among those with type 1 diabetes, female people tended to have lower HbA1c levels than male people during childbearing years but higher HbA1c levels than male people during menopausal years. Team members living with diabetes confirmed that the patterns we observed reflected their own life courses and suggested that these results be communicated to health professionals and other stakeholders to improve the treatment for people living with diabetes. Conclusions: A substantial proportion of people with diabetes in Canada may need additional support to reach or maintain the guideline-recommended glycemic control goals. Blood sugar management goals may be particularly challenging for people going through adolescence or menopause or those living with fewer financial resources. Health professionals should be aware of the challenging nature of glycemic management, and policy makers in Canada should provide more support for people with diabetes to live healthy lives. ", doi="10.2196/35682", url="https://diabetes.jmir.org/2023/1/e35682", url="http://www.ncbi.nlm.nih.gov/pubmed/37104030" } @Article{info:doi/10.2196/45408, author="Lam, Sing Chun and Zhou, Keary and Loong, Ho-Fung Herbert and Chung, Chi-Ho Vincent and Ngan, Chun-Kit and Cheung, Ting Yin", title="The Use of Traditional, Complementary, and Integrative Medicine in Cancer: Data-Mining Study of 1 Million Web-Based Posts From Health Forums and Social Media Platforms", journal="J Med Internet Res", year="2023", month="Apr", day="21", volume="25", pages="e45408", keywords="traditional", keywords="complementary", keywords="integrative", keywords="social media", keywords="cancer", keywords="forums, digital health", keywords="traditional, complementary, and integrative medicine", keywords="TCIM", keywords="perceptions", keywords="machine learning", keywords="cancer care", abstract="Background: Patients with cancer are increasingly using forums and social media platforms to access health information and share their experiences, particularly in the use of traditional, complementary, and integrative medicine (TCIM). Despite the popularity of TCIM among patients with cancer, few related studies have used data from these web-based sources to explore the use of TCIM among patients with cancer. Objective: This study leveraged multiple forums and social media platforms to explore patients' use, interest, and perception of TCIM for cancer care. Methods: Posts (in English) related to TCIM were collected from Facebook, Twitter, Reddit, and 16 health forums from inception until February 2022. Both manual assessments and natural language processing were performed. Descriptive analyses were performed to explore the most commonly discussed TCIM modalities for each symptom and cancer type. Sentiment analyses were performed to measure the polarity of each post or comment, and themes were identified from posts with positive and negative sentiments. TCIM modalities that are emerging or recommended in the guidelines were identified a priori. Exploratory topic-modeling analyses with latent Dirichlet allocation were conducted to investigate the patients' perceptions of these modalities. Results: Among the 1,620,755 posts available, cancer-related symptoms, such as pain (10/10, 100\% cancer types), anxiety and depression (9/10, 90\%), and poor sleep (9/10, 90\%), were commonly discussed. Cannabis was among the most frequently discussed TCIM modalities for pain in 7 (70\%) out of 10 cancer types, as well as nausea and vomiting, loss of appetite, anxiety and depression, and poor sleep. A total of 7 positive and 7 negative themes were also identified. The positive themes included TCIM, making symptoms manageable, and reducing the need for medication and their side effects. The belief that TCIM and conventional treatments were not mutually exclusive and intolerance to conventional treatment may facilitate TCIM use. Conversely, TCIM was viewed as leading to patients' refusal of conventional treatment or delays in diagnosis and treatment. Doctors' ignorance regarding TCIM and the lack of information provided about TCIM may be barriers to its use. Exploratory analyses showed that TCIM recommendations were well discussed among patients; however, these modalities were also used for many other indications. Other notable topics included concerns about the legalization of cannabis, acupressure techniques, and positive experiences of meditation. Conclusions: Using machine learning techniques, social media and health forums provide a valuable resource for patient-generated data regarding the pattern of use and patients' perceptions of TCIM. Such information will help clarify patients' needs and concerns and provide directions for research on integrating TCIM into cancer care. Our results also suggest that effective communication about TCIM should be achieved and that doctors should be more open-minded to actively discuss TCIM use with their patients. ", doi="10.2196/45408", url="https://www.jmir.org/2023/1/e45408", url="http://www.ncbi.nlm.nih.gov/pubmed/37083752" } @Article{info:doi/10.2196/46187, author="Veinot, Christine Tiffany and Gillespie, Brenda and Argentina, Marissa and Bragg-Gresham, Jennifer and Chatoth, Dinesh and Collins Damron, Kelli and Heung, Michael and Krein, Sarah and Wingard, Rebecca and Zheng, Kai and Saran, Rajiv", title="Enhancing the Cardiovascular Safety of Hemodialysis Care Using Multimodal Provider Education and Patient Activation Interventions: Protocol for a Cluster Randomized Controlled Trial", journal="JMIR Res Protoc", year="2023", month="Apr", day="20", volume="12", pages="e46187", keywords="hemodialysis care", keywords="patient peer mentoring", keywords="telehealth", keywords="digital checklist", keywords="team training", keywords="cluster randomized controlled trial", keywords="pragmatic trial", abstract="Background: End-stage kidney disease (ESKD) is treated with dialysis or kidney transplantation, with most patients with ESKD receiving in-center hemodialysis treatment. This life-saving treatment can result in cardiovascular and hemodynamic instability, with the most common form being low blood pressure during the dialysis treatment (intradialytic hypotension [IDH]). IDH is a complication of hemodialysis that can involve symptoms such as fatigue, nausea, cramping, and loss of consciousness. IDH increases risks of cardiovascular disease and ultimately hospitalizations and mortality. Provider-level and patient-level decisions influence the occurrence of IDH; thus, IDH may be preventable in routine hemodialysis care. Objective: This study aims to evaluate the independent and comparative effectiveness of 2 interventions---one directed at hemodialysis providers and another for patients---in reducing the rate of IDH at hemodialysis facilities. In addition, the study will assess the effects of interventions on secondary patient-centered clinical outcomes and examine factors associated with a successful implementation of the interventions. Methods: This study is a pragmatic, cluster randomized trial to be conducted in 20 hemodialysis facilities in the United States. Hemodialysis facilities will be randomized using a 2 {\texttimes} 2 factorial design, such that 5 sites will receive a multimodal provider education intervention, 5 sites will receive a patient activation intervention, 5 sites will receive both interventions, and 5 sites will receive none of the 2 interventions. The multimodal provider education intervention involved theory-informed team training and the use of a digital, tablet-based checklist to heighten attention to patient clinical factors associated with increased IDH risk. The patient activation intervention involves tablet-based, theory-informed patient education and peer mentoring. Patient outcomes will be monitored during a 12-week baseline period, followed by a 24-week intervention period and a 12-week postintervention follow-up period. The primary outcome of the study is the proportion of treatments with IDH, which will be aggregated at the facility level. Secondary outcomes include patient symptoms, fluid adherence, hemodialysis adherence, quality of life, hospitalizations, and mortality. Results: This study is funded by the Patient-Centered Outcomes Research Institute and approved by the University of Michigan Medical School's institutional review board. The study began enrolling patients in January 2023. Initial feasibility data will be available in May 2023. Data collection will conclude in November 2024. Conclusions: The effects of provider and patient education on reducing the proportion of sessions with IDH and improving other patient-centered clinical outcomes will be evaluated, and the findings will be used to inform further improvements in patient care. Improving the stability of hemodialysis sessions is a critical concern for clinicians and patients with ESKD; the interventions targeted to providers and patients are predicted to lead to improvements in patient health and quality of life. Trial Registration: ClinicalTrials.gov NCT03171545; https://clinicaltrials.gov/ct2/show/NCT03171545 International Registered Report Identifier (IRRID): PRR1-10.2196/46187 ", doi="10.2196/46187", url="https://www.researchprotocols.org/2023/1/e46187", url="http://www.ncbi.nlm.nih.gov/pubmed/37079365" } @Article{info:doi/10.2196/43861, author="Davoody, Nadia and Eghdam, Aboozar and Koch, Sabine and H{\"a}gglund, Maria", title="Evaluation of an Electronic Care and Rehabilitation Planning Tool With Stroke Survivors With Aphasia: Usability Study", journal="JMIR Hum Factors", year="2023", month="Apr", day="17", volume="10", pages="e43861", keywords="usability testing", keywords="stroke", keywords="aphasia", keywords="eHealth", keywords="rehabilitation", keywords="co-design", keywords="evaluation", keywords="user-centered design", keywords="effectiveness", keywords="user satisfaction", keywords="mobile phone", abstract="Background: Patients with chronic illnesses with physical and cognitive disabilities, particularly stroke survivors with aphasia, are often not involved in design and evaluation processes. As a consequence, existing eHealth services often do not meet the needs of this group of patients, which has resulted in a digital divide. Objective: The aim of this study was to examine the effectiveness and user satisfaction of an electronic care and rehabilitation planning tool from the perspective of stroke survivors with aphasia. This would help us gain knowledge on how such a tool would need to be adapted for these patients for further development. Methods: Usability tests were conducted with 9 postdischarge stroke survivors with aphasia. Effectiveness was measured using task-based tests, and user satisfaction was studied through qualitative interviews at the end of each test. All tests were audio recorded, and each test lasted approximately 1 hour. The data were analyzed using qualitative content analysis. As the tool can be used by stroke survivors either independently or with some support from their next of kin or care professionals, the research group decided to divide the participants into 2 groups. Group 1 did not receive any support during the tests, and group 2 received some minor support from the moderator. Results: The results showed that the care and rehabilitation planning tool was not effective for stroke survivors with aphasia, as many participants in group 1 did not accomplish the tasks successfully. Despite several usability problems and challenges in using the tool because of patients' disabilities, the participants were positive toward using the tool and found it useful for their care and rehabilitation journey. Conclusions: There is a need to involve patients with chronic illnesses more in the design and evaluation processes of health information systems and eHealth services. eHealth services and health information systems designed for this group of patients should be more adaptable and flexible to provide them with appropriate functionalities and features, meet their needs, and be useful and easy to use. In addition, the design and evaluation processes should be adapted, considering the challenges of this patient group. ", doi="10.2196/43861", url="https://humanfactors.jmir.org/2023/1/e43861", url="http://www.ncbi.nlm.nih.gov/pubmed/37067848" } @Article{info:doi/10.2196/45002, author="Cumyn, Annabelle and M{\'e}nard, Jean-Fr{\'e}d{\'e}ric and Barton, Adrien and Dault, Roxanne and L{\'e}vesque, Fr{\'e}d{\'e}rique and Ethier, Jean-Fran{\c{c}}ois", title="Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review", journal="J Med Internet Res", year="2023", month="Apr", day="13", volume="25", pages="e45002", keywords="transparency", keywords="information", keywords="means of communication", keywords="public", keywords="patients", keywords="secondary use", keywords="health data", keywords="learning health systems", abstract="Background: Secondary use of health data has reached unequaled potential to improve health systems governance, knowledge, and clinical care. Transparency regarding this secondary use is frequently cited as necessary to address deficits in trust and conditional support and to increase patient awareness. Objective: We aimed to review the current published literature to identify different stakeholders' perspectives and recommendations on what information patients and members of the public want to learn about the secondary use of health data for research purposes and how and in which situations. Methods: Using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, we conducted a scoping review using Medline, CINAHL, PsycINFO, Scopus, Cochrane Library, and PubMed databases to locate a broad range of studies published in English or French until November 2022. We included articles reporting a stakeholder's perspective or recommendations of what information patients and members of the public want to learn about the secondary use of health data for research purposes and how or in which situations. Data were collected and analyzed with an iterative thematic approach using NVivo. Results: Overall, 178 articles were included in this scoping review. The type of information can be divided into generic and specific content. Generic content includes information on governance and regulatory frameworks, technical aspects, and scientific aims. Specific content includes updates on the use of one's data, return of results from individual tests, information on global results, information on data sharing, and how to access one's data. Recommendations on how to communicate the information focused on frequency, use of various supports, formats, and wording. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content, and mixed approaches for specific content including websites, patient portals, and face-to-face encounters. Content should be tailored to the individual as much as possible with regard to length, avoidance of technical terms, cultural competence, and level of detail. Finally, the review outlined 4 major situations where communication was deemed necessary: before a new use of data, when new test results became available, when global research results were released, and in the advent of a breach in confidentiality. Conclusions: This review highlights how different types of information and approaches to communication efforts may serve as the basis for achieving greater transparency. Governing bodies could use the results: to elaborate or evaluate strategies to educate on the potential benefits; to provide some knowledge and control over data use as a form of reciprocity; and as a condition to engage citizens and build and maintain trust. Future work is needed to assess which strategies achieve the greatest outreach while striking a balance between meeting information needs and use of resources. ", doi="10.2196/45002", url="https://www.jmir.org/2023/1/e45002", url="http://www.ncbi.nlm.nih.gov/pubmed/37052967" } @Article{info:doi/10.2196/41832, author="Keuper, Jelle and Batenburg, Ronald and van Tuyl, Lilian and Verheij, Robert", title="General Practices' Experiences With Patients' Web-Based Access to Medical Records: Survey Study", journal="J Med Internet Res", year="2023", month="Apr", day="7", volume="25", pages="e41832", keywords="patient access to records", keywords="electronic health record", keywords="patient portals", keywords="general practice", keywords="administrative burden", keywords="health information", keywords="shared decision-making", keywords="health care professionals", abstract="Background: Patients' web-based access to their medical records is expected to promote their role and responsibility in managing their own health and treatments and supporting shared decision-making. As of July 2020, general practices in the Netherlands are legally obliged to provide their patients access to their electronic medical records. Web-based access provision is facilitated and stimulated through a national support program named OPEN. Objective: We aimed to investigate general practice staff experiences with providing web-based access; investigate its impact on patient consultations, administrative actions, and patient inquiries; and investigate how it affects routine general practice workflow processes. Methods: In October 2021, a total of 3813 general practices in the Netherlands were invited to complete a web-based survey that included questions regarding their experiences with the provision of web-based access to medical records and how it affects routine general practice workflow. Responses of general practices that started providing web-based access before 2020, in 2020, or in 2021 were analyzed to identify trends. Results: Of 3813 invited general practices, 523 (13.72\%) completed the survey. Approximately all responding general practices (487/523, 93.1\%) indicated that they provide web-based access. Experiences with patients' web-based access were diverse, with 36.9\% (178/482) primarily positive, 8.1\% (39/482) primarily negative, 42.3\% (204/482) neutral, and 12.7\% (61/482) could not (yet) indicate how they experienced web-based access. Of the total, two-thirds (311/473, 65.8\%) reported an increase in e-consultations and a similar percentage (302/474, 63.7\%) indicated an increase in administrative actions associated with web-based access provision. A small proportion of the practices (?10\%) experienced a decrease in patient contacts. Earlier adoption of web-based access was associated with a more positive attitude toward web-based access and more positive experienced effects related to patient contacts and general practice workflow. Conclusions: The surveyed general practices mainly experienced providing web-based access as either neutral or mostly positive, despite an increased number of patient contacts and administrative burden that were associated with its adoption. Periodic monitoring of experiences is needed to understand the temporal or structural nature of both the intended and unintended effects of patients' web-based access to medical records for general practices and their staff. ", doi="10.2196/41832", url="https://www.jmir.org/2023/1/e41832", url="http://www.ncbi.nlm.nih.gov/pubmed/37027195" } @Article{info:doi/10.2196/42704, author="Jenkinson, P. George and Houghton, Natasha and van Zalk, Nejra and Waller, Jo and Bello, Fernando and Tzemanaki, Antonia", title="Acceptability of Automated Robotic Clinical Breast Examination: Survey Study", journal="J Particip Med", year="2023", month="Apr", day="3", volume="15", pages="e42704", keywords="breast cancer detection", keywords="automated diagnosis", keywords="breast examination", keywords="health care robotics", keywords="patient and public involvement", keywords="participatory design", keywords="user acceptability", keywords="mammography", keywords="breast cancer", abstract="Background: In the United Kingdom, women aged 50 to 70 years are invited to undergo mammography. However, 10\% of invasive breast cancers occur in women aged ?45 years, representing an unmet need for young women. Identifying a suitable screening modality for this population is challenging; mammography is insufficiently sensitive, whereas alternative diagnostic methods are invasive or costly. Robotic clinical breast examination (R-CBE)---using soft robotic technology and machine learning for fully automated clinical breast examination---is a theoretically promising screening modality with early prototypes under development. Understanding the perspectives of potential users and partnering with patients in the design process from the outset is essential for ensuring the patient-centered design and implementation of this technology. Objective: This study investigated the attitudes and perspectives of women regarding the use of soft robotics and intelligent systems in breast cancer screening. It aimed to determine whether such technology is theoretically acceptable to potential users and identify aspects of the technology and implementation system that are priorities for patients, allowing these to be integrated into technology design. Methods: This study used a mixed methods design. We conducted a 30-minute web-based survey with 155 women in the United Kingdom. The survey comprised an overview of the proposed concept followed by 5 open-ended questions and 17 closed questions. Respondents were recruited through a web-based survey linked to the Cancer Research United Kingdom patient involvement opportunities web page and distributed through research networks' mailing lists. Qualitative data generated via the open-ended questions were analyzed using thematic analysis. Quantitative data were analyzed using 2-sample Kolmogorov-Smirnov tests, 1-tailed t tests, and Pearson coefficients. Results: Most respondents (143/155, 92.3\%) indicated that they would definitely or probably use R-CBE, with 82.6\% (128/155) willing to be examined for up to 15 minutes. The most popular location for R-CBE was at a primary care setting, whereas the most accepted method for receiving the results was an on-screen display (with an option to print information) immediately after the examination. Thematic analysis of free-text responses identified the following 7 themes: women perceive that R-CBE has the potential to address limitations in current screening services; R-CBE may facilitate increased user choice and autonomy; ethical motivations for supporting R-CBE development; accuracy (and users' perceptions of accuracy) is essential; results management with clear communication is a priority for users; device usability is important; and integration with health services is key. Conclusions: There is a high potential for the acceptance of R-CBE in its target user group and a high concordance between user expectations and technological feasibility. Early patient participation in the design process allowed the authors to identify key development priorities for ensuring that this new technology meets the needs of users. Ongoing patient and public involvement at each development stage is essential. ", doi="10.2196/42704", url="https://jopm.jmir.org/2023/1/e42704", url="http://www.ncbi.nlm.nih.gov/pubmed/37010907" } @Article{info:doi/10.2196/42804, author="De Rosis, Sabina and Bonciani, Manila and Spataro, Veronica and Corazza, Ilaria and Conti, Elisa and Sibbles, Barbara and Hazelzet, A. Jan and Lahdenne, Pekka and Gehrmann, Katariina and Menegazzo, Francesca and Sica, Michela and {\vS}teina, Vita and Esenberga, Guna and Chapin, M. Elise and Solare, Stefania and Vainieri, Milena", title="Value of Including the Children's Experience for Improving Their Rights During Hospitalization: Protocol for the VoiCEs Project", journal="JMIR Res Protoc", year="2023", month="Apr", day="3", volume="12", pages="e42804", keywords="patient experience", keywords="patient-reported experience", keywords="PREM", keywords="pediatric patients", keywords="children", keywords="adolescents", keywords="coproduction", keywords="coassessment", keywords="health care services", keywords="hospitalization", abstract="Background: Users' feedback is a key asset for organizations that want to improve their services. Studying how organizations are enabling their users to participate in evaluation activities is particularly important, especially when there are vulnerable or disadvantaged people, and the services to be evaluated can be life-changing. This is the case in the coassessment by pediatric patients experiencing hospital stay. The international literature reports a few attempts and several challenges in systematically collecting and using the pediatric patient experience with respect to hospitalization, to undertake quality improvement actions. Objective: This paper describes the research protocol of a European project intended to develop and implement a systematic pediatric patient-reported experience measures (PREMs) observatory that will be shared by 4 European children's hospitals in Finland, Italy, Latvia, and the Netherlands. Methods: The VoiCEs (Value of including the Children's Experience for improving their rightS during hospitalization) project uses a participatory action research approach, based on a mixture of qualitative and quantitative methods. It consists of 6 different phases, including a literature review, an analysis of the previous experiences of pediatric PREMs reported by project partners, a Delphi process, a cycle of focus groups or in-depth interviews with children and their caregivers, a series of workshops with interactive working groups, and a cross-sectional observational survey. The project guarantees the direct participation of children and adolescents in the development and implementation phases of the project. Results: The expected results are (1) a deeper knowledge of published methodologies and tools on collecting and reporting pediatric patients' voice; (2) lessons learnt from the analysis of previous experiences of pediatric PREMs; a consensus reached through a participatory process (3) among experts, (4) pediatric patients and caregivers about a standard set of measures for the evaluation of hospitalization by patients; (5) the implementation of a European observatory on pediatric PREMs; and (6) the collection and comparative reporting of the pediatric patients' voice. In addition, the project is aimed at studying and proposing innovative methodologies and tools for capturing the pediatric patients' feedback directly, avoiding the intermediation of parents/guardians. Conclusions: Over the last decade, the collection and use of PREMs have gained importance as a research field. Children and adolescents' perspectives have also been increasingly taken into consideration. However, to date, there are limited experiences regarding the continuous and systematic collection and use of pediatric PREMs data for implementing timely improvement actions. In this perspective, the VoiCEs project provides room for innovation, by contributing to the creation of an international, continuous, and systematic pediatric PREMs observatory that can be joined by other children's hospitals or hospitals with pediatric patients, and foresees the return of usable and actionable data in benchmarking. International Registered Report Identifier (IRRID): DERR1-10.2196/42804 ", doi="10.2196/42804", url="https://www.researchprotocols.org/2023/1/e42804", url="http://www.ncbi.nlm.nih.gov/pubmed/37010905" } @Article{info:doi/10.2196/37141, author="Dolan, H. Elizabeth and Goulding, James and Tata, J. Laila and Lang, R. Alexandra", title="Using Shopping Data to Improve the Diagnosis of Ovarian Cancer: Computational Analysis of a Web-Based Survey", journal="JMIR Cancer", year="2023", month="Mar", day="31", volume="9", pages="e37141", keywords="carcinoma", keywords="ovarian epithelial", keywords="ovarian neoplasms", keywords="self-medication", keywords="diagnostic errors", keywords="symptom assessment", keywords="machine learning", keywords="nonprescription drugs", keywords="over-the-counter", keywords="pharmaceutical", keywords="symptom", keywords="ovary", keywords="ovarian cancer", keywords="oncology", keywords="cancer", abstract="Background: Shopping data can be analyzed using machine learning techniques to study population health. It is unknown if the use of such methods can successfully investigate prediagnosis purchases linked to self-medication of symptoms of ovarian cancer. Objective: The aims of this study were to gain new domain knowledge from women's experiences, understand how women's shopping behavior relates to their pathway to the diagnosis of ovarian cancer, and inform research on computational analysis of shopping data for population health. Methods: A web-based survey on individuals' shopping patterns prior to an ovarian cancer diagnosis was analyzed to identify key knowledge about health care purchases. Logistic regression and random forest models were employed to statistically examine how products linked to potential symptoms related to presentation to health care and timing of diagnosis. Results: Of the 101 women surveyed with ovarian cancer, 58.4\% (59/101) bought nonprescription health care products for up to more than a year prior to diagnosis, including pain relief and abdominal products. General practitioner advice was the primary reason for the purchases (23/59, 39\%), with 51\% (30/59) occurring due to a participant's doctor believing their health problems were due to a condition other than ovarian cancer. Associations were shown between purchases made because a participant's doctor believing their health problems were due to a condition other than ovarian cancer and the following variables: health problems for longer than a year prior to diagnosis (odds ratio [OR] 7.33, 95\% CI 1.58-33.97), buying health care products for more than 6 months to a year (OR 3.82, 95\% CI 1.04-13.98) or for more than a year (OR 7.64, 95\% CI 1.38-42.33), and the number of health care product types purchased (OR 1.54, 95\% CI 1.13-2.11). Purchasing patterns are shown to be potentially predictive of a participant's doctor thinking their health problems were due to some condition other than ovarian cancer, with nested cross-validation of random forest classification models achieving an overall in-sample accuracy score of 89.1\% and an out-of-sample score of 70.1\%. Conclusions: Women in the survey were 7 times more likely to have had a duration of more than a year of health problems prior to a diagnosis of ovarian cancer if they were self-medicating based on advice from a doctor rather than having made the decision to self-medicate independently. Predictive modelling indicates that women in such situations, who are self-medicating because their doctor believes their health problems may be due to a condition other than ovarian cancer, exhibit distinct shopping behaviors that may be identifiable within purchasing data. Through exploratory research combining women sharing their behaviors prior to diagnosis and computational analysis of these data, this study demonstrates that women's shopping data could potentially be useful for early ovarian cancer detection. ", doi="10.2196/37141", url="https://cancer.jmir.org/2023/1/e37141", url="http://www.ncbi.nlm.nih.gov/pubmed/37000495" } @Article{info:doi/10.2196/44660, author="Blackie, A. Caroline and Gualtieri, Lisa and Kasturi, Shanthini", title="Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?", journal="J Med Internet Res", year="2023", month="Mar", day="29", volume="25", pages="e44660", keywords="lupus", keywords="patient symptom", keywords="patient journey", keywords="chronic disease", keywords="lived experience", keywords="patient experience", keywords="patient need", keywords="digital health intervention", keywords="autoimmune disease", keywords="clinical care", keywords="digital voice", keywords="social media", keywords="patient care", keywords="online community", keywords="social listening", keywords="autoimmune", keywords="experience", keywords="perspective", doi="10.2196/44660", url="https://www.jmir.org/2023/1/e44660", url="http://www.ncbi.nlm.nih.gov/pubmed/36989021" } @Article{info:doi/10.2196/41867, author="Willis, Erin and Friedel, Kate and Heisten, Mark and Pickett, Melissa and Bhowmick, Amrita", title="Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With ``Patient Influencers''", journal="J Med Internet Res", year="2023", month="Mar", day="13", volume="25", pages="e41867", keywords="social media", keywords="social media influencer", keywords="pharmaceutical advertising", keywords="health literacy", abstract="Background: Historically, pharmaceutical companies have struggled with trust and brand reputation among key stakeholders and have adopted innovative marketing strategies to reach patients directly and rebuild those relationships. Social media influencers are a popular strategy to influence younger demographics, including Generation Z and millennials. It is common for social media influencers to work in paid partnerships with brands; this is a multibillion-dollar industry. Long have patients been active in online health communities and social media platforms such as Twitter and Instagram, but in recent years, pharmaceutical marketers have noticed the power of patient persuasion and begun to leverage ``patient influencers'' in brand campaigns. Objective: This study aimed to explore how patient influencers communicate health literacy on pharmaceutical medications on social media to their communities of followers. Methods: A total of 26 in-depth interviews were conducted with patient influencers using a snowball sampling technique. This study is part of a larger project using an interview guide that included a range of topics such as social media practices, logistics of being an influencer, considerations for brand partnerships, and views on the ethical nature of patient influencers. The constructs of the Health Belief Model were used in this study's data analysis: perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action, and self-efficacy. This study was approved by the institutional review board of the University of Colorado and adhered to ethical standards in interview practice. Results: As patient influencers are a new phenomenon, it was our goal to identify how health literacy on prescription medications and pharmaceuticals is being communicated on social media. Using the constructs of the Health Belief Model to guide the analysis, 3 themes were identified: understanding disease through experience, staying informed on the science or field, and suggesting that physicians know best. Conclusions: Patients are actively exchanging health information on social media channels and connecting with other patients who share similar diagnoses. Patient influencers share their knowledge and experience in efforts to help other patients learn about disease self-management and improve their quality of life. Similar to traditional direct-to-consumer advertising, the phenomenon of patient influencers raises ethical questions that need more investigation. In a way, patient influencers are health education agents who may also share prescription medication or pharmaceutical information. They can break down complex health information based on expertise and experience and mitigate the loneliness and isolation that other patients may feel without the support of a community. ", doi="10.2196/41867", url="https://www.jmir.org/2023/1/e41867", url="http://www.ncbi.nlm.nih.gov/pubmed/36912881" } @Article{info:doi/10.2196/42021, author="Leonard, M. Sophia and Zackula, Rosalee and Wilcher, Jonathan", title="Attitudes and Experiences of Clinicians After Mandated Implementation of Open Notes by the 21st Century Cures Act: Survey Study", journal="J Med Internet Res", year="2023", month="Feb", day="28", volume="25", pages="e42021", keywords="21st Century Cures Act", keywords="Final Rule", keywords="shared notes", keywords="open notes", keywords="OpenNotes", keywords="health policy", keywords="clinician opinion", keywords="mobile phone", abstract="Background: On December 13, 2016, the US Congress enacted the 21st Century Cures Act (hereafter the Cures Act), which contained the Final Rule mandate that took effect on April 5, 2021. Since then, health systems have been required to provide patients digital access to their eHealth information ``without delay'' and without charge. Objective: This study aimed to assess clinicians' initial experiences with, and attitudes toward, sharing visit notes with patients after being mandated to do so by the Cures Act and to determine clinician preferences regarding instant record release. Methods: This cross-sectional survey study was conducted between June 10, 2021, and August 15, 2021, at the University of Kansas Health System, a large academic medical center in Kansas City, Kansas, United States. Participants included clinicians currently employed by the health system, including resident and attending physicians, physician assistants, nurse practitioners, and critical care and emergency medicine registered nurses. Results: A total of 1574 attending physicians, physician assistants, and nurse practitioners, as well as 506 critical care and emergency medicine nurses, were sent invitations; 538 (34.18\%) and 72 (14.2\%), respectively, responded. Of 609 resident physicians, 4 (response rate not applicable because it was unknown how many residents viewed the website while the link was available) responded. The majority of respondents were attending physicians (402/614, 65.5\%) and within the department of internal medicine (160/614, 26.1\%). Most agreed that sharing visit notes was a good idea (355/613, 57.9\%) and that it is important to speak with the patients before they accessed their records (431/613, 70.3\%). Those who agreed that sharing visit notes is a good idea tended to view the practice as a useful tool for engaging patients (``Agree'': 139/355, 39.2\%; ``Somewhat agree'': 161/355, 45.4\%; P<.001) and experience no change in the clinical value of their notes for other clinicians (326/355, 91.8\%; P<.001). Those who disagreed (or were neutral) tended not to encourage patients to read their notes (235/258, 91.1\%; P<.001) and were more likely to experience a change in their charting practice (168/257, 65.4\%; P<.001) and increased time charting (99/258, 38.4\%; P<.001). Conclusions: The findings of this study may be generalizable to institutions similar to the University of Kansas Health System, and the clinician testimonies gathered in this study may provide valuable insight into the initial opinions and experiences of clinicians at these institutions. In addition, these clinician experiences collected early in the transition period may be used to guide future health policy implementation and to understand how best to prepare clinicians for these changes in practice. ", doi="10.2196/42021", url="https://www.jmir.org/2023/1/e42021", url="http://www.ncbi.nlm.nih.gov/pubmed/36853747" } @Article{info:doi/10.2196/40961, author="Ross, Jamie and Cotterill, Sarah and Bower, Peter and Murray, Elizabeth", title="Influences on Patient Uptake of and Engagement With the National Health Service Digital Diabetes Prevention Programme: Qualitative Interview Study", journal="J Med Internet Res", year="2023", month="Feb", day="28", volume="25", pages="e40961", keywords="diabetes prevention", keywords="digital health interventions", keywords="engagement", keywords="qualitative research", keywords="mobile phone", abstract="Background: Digital diabetes prevention programs (digital-DPPs) are being implemented as population-based approaches to type 2 diabetes mellitus prevention in several countries to address problems with the uptake of traditional face-to-face diabetes prevention programs. However, assessments of digital-DPPs have largely focused on clinical outcomes and usability among those who have taken them up, whereas crucial information on decision-making about uptake (eg, whether a user downloads and registers on an app) and engagement (eg, the extent of use of an app or its components over time) is limited. Greater understanding of factors that influence uptake and engagement decisions may support large-scale deployments of digital-DPPs in real-world settings. Objective: This study aimed to explore the key influences on uptake and engagement decisions of individuals who were offered the National Health Service Healthier You: Digital Diabetes Prevention Programme (NHS-digital-DPP). Methods: A qualitative interview study was conducted using semistructured interviews. Participants were adults, aged ?18 years, diagnosed with nondiabetic hyperglycemia, and those who had been offered the NHS-digital-DPP. Recruitment was conducted via 4 providers of the NHS-digital-DPP and 3 primary care practices in England. Interviews were conducted remotely and were guided by a theoretically informed topic guide. Analysis of interviews was conducted using an inductive thematic analysis approach. Results: Interviews were conducted with 32 participants who had either accepted or declined the NHS-digital-DPP. In total, 7 overarching themes were identified as important factors in both decisions to take up and to engage with the NHS-digital-DPP. These were knowledge and understanding, referral process, self-efficacy, self-identity, motivation and support, advantages of digital service, and reflexive monitoring. Perceptions of accessibility and convenience of the NHS-digital-DPP were particularly important for uptake, and barriers in terms of the referral process and health care professionals' engagement were reported. Specific digital features including health coaches and monitoring tools were important for engagement. Conclusions: This study adds to the literature on factors that influence the uptake of and engagement with digital-DPPs and suggests that digital-DPPs can overcome many barriers to the uptake of face-to-face diabetes prevention programs in supporting lifestyle changes aimed at diabetes prevention. ", doi="10.2196/40961", url="https://www.jmir.org/2023/1/e40961", url="http://www.ncbi.nlm.nih.gov/pubmed/36853751" } @Article{info:doi/10.2196/40634, author="Haun, N. Jolie and Melillo, Christine and Schneider, Tali and Merzier, M. Marie and Klanchar, Angelina S. and Fowler, A. Christopher and Benzinger, C. Rachel", title="User Testing of the Veteran Delegation Tool: Qualitative Inquiry", journal="J Med Internet Res", year="2023", month="Feb", day="23", volume="25", pages="e40634", keywords="electronic health portal", keywords="human-centered design", keywords="delegate", keywords="electronic resources", keywords="delegation", keywords="care partner", keywords="veteran", keywords="Veteran Delegation Tool", keywords="Veterans Health Administration", abstract="Background: Informal caregivers, or care partners, provide critical support to care recipients when managing health care. Veterans Health Administration (VHA) priorities identify care partners as vital in supporting veterans' care management. The Veteran Delegation Tool (VDT) is VHA's Health Insurance Portability and Accountability Act--compliant solution for care partners to comanage veterans' care through VHA's electronic health portal. Human-centered design approaches in VDT development are needed to inform enhancements aimed at promoting uptake and sustained use. Objective: The objective of this prospective descriptive quality improvement project was to use a human-centered design approach to examine VDT use perceptions and practical experiences. Methods: This project was conducted using a 4-phase approach: frame, discover, design, and deliver. The frame phase designed the protocol and prepared the VDT system for testing. This paper reports on the discover phase, which used semistructured and follow-up interviews and user testing to examine VDT's benefits, facilitators, and barriers. The discover phase data informed the design and deliver phases, which are underway. Results: Veterans (24/54, 44\%), care partners (21/54, 39\%), and individuals who represented dual roles (9/54, 17\%)---namely veteran care partner (4/54, 7\%), veteran clinical provider (2/54, 4\%), and care partner provider (3/54, 6\%)---participated in semistructured interviews in the discover phase. A subsample of these participants (3/54, 6\%) participated in the follow-up interviews and user testing. Analysis of the semistructured interviews indicated convergence on the respondents' perceptions of VDT's benefits, facilitators, and barriers and recommendations for improving VDT. The perceived benefits were authorized access, comanagement of care needs on the web, communication with the clinical team, access to resources, and ease of burden. Perceived barriers were nonrecognition of the benefits of VDT, technical literacy access issues, increased stress in or burden on care partners, and personal health information security. Participant experiences across 4 VDT activity domains were upgrade to My HealtheVet Premium account, registration, sign-in, and use. User testing demonstrated users' challenges to register, navigate, and use VDT. Findings informed VDT development enhancements and recommendations. Conclusions: Care partners need Health Insurance Portability and Accountability Act--compliant access to electronic health portals to assist with care management. VDT is VHA's solution, allowing communication among delegates, veterans, and clinical care teams. Users value VDT's potential use and benefits, while access and navigation improvements to ensure uptake and sustained use are needed. Future efforts need to iteratively evaluate the human-centered phases, design and deliver, of VDT to target audiences. Continued efforts to understand and respond to care partners' needs are warranted. ", doi="10.2196/40634", url="https://www.jmir.org/2023/1/e40634", url="http://www.ncbi.nlm.nih.gov/pubmed/36821364" } @Article{info:doi/10.2196/43496, author="Blease, Charlotte and Torous, John and Dong, Zhiyong and Davidge, Gail and DesRoches, Catherine and Kharko, Anna and Turner, Andrew and Jones, Ray and H{\"a}gglund, Maria and McMillan, Brian", title="Patient Online Record Access in English Primary Care: Qualitative Survey Study of General Practitioners' Views", journal="J Med Internet Res", year="2023", month="Feb", day="22", volume="25", pages="e43496", keywords="electronic health records", keywords="attitudes", keywords="general practice", keywords="patients", keywords="online record access", keywords="open notes", keywords="opinions", keywords="primary care", keywords="qualitative research", abstract="Background: In 2022, NHS England announced plans to ensure that all adult primary care patients in England would have full online access to new data added to their general practitioner (GP) record. However, this plan has not yet been fully implemented. Since April 2020, the GP contract in England has already committed to offering patients full online record access on a prospective basis and on request. However, there has been limited research into UK GPs' experiences and opinions about this practice innovation. Objective: This study aimed to explore the experiences and opinions of GPs in England about patients' access to their full web-based health record, including clinicians' free-text summaries of the consultation (so-called ``open notes''). Methods: In March 2022, using a convenience sample, we administered a web-based mixed methods survey of 400 GPs in the United Kingdom to explore their experiences and opinions about the impact on patients and GPs' practices to offer patients full online access to their health records. Participants were recruited using the clinician marketing service Doctors.net.uk from registered GPs currently working in England. We conducted a qualitative descriptive analysis of written responses (``comments'') to 4 open-ended questions embedded in a web-based questionnaire. Results: Of 400 GPs, 224 (56\%) left comments that were classified into 4 major themes: increased strain on GP practices, the potential to harm patients, changes to documentation, and legal concerns. GPs believed that patient access would lead to extra work for them, reduced efficiency, and increased burnout. The participants also believed that access would increase patient anxiety and incur risks to patient safety. Experienced and perceived documentation changes included reduced candor and changes to record functionality. Anticipated legal concerns encompassed fears about increased litigation risks and lack of legal guidance to GPs about how to manage documentation that would be read by patients and potential third parties. Conclusions: This study provides timely information on the views of GPs in England regarding patient access to their web-based health records. Overwhelmingly, GPs were skeptical about the benefits of access both for patients and to their practices. These views are similar to those expressed by clinicians in other countries, including Nordic countries and the United States before patient access. The survey was limited by the convenience sample, and it is not possible to infer that our sample was representative of the opinions of GPs in England. More extensive, qualitative research is required to understand the perspectives of patients in England after experiencing access to their web-based records. Finally, further research is needed to explore objective measures of the impact of patient access to their records on health outcomes, clinician workload, and changes to documentation. ", doi="10.2196/43496", url="https://www.jmir.org/2023/1/e43496", url="http://www.ncbi.nlm.nih.gov/pubmed/36811939" } @Article{info:doi/10.2196/42887, author="Almomani, Hamzeh and Patel, Nilesh and Donyai, Parastou", title="Reasons That Lead People to End Up Buying Fake Medicines on the Internet: Qualitative Interview Study", journal="JMIR Form Res", year="2023", month="Feb", day="16", volume="7", pages="e42887", keywords="fake medicines", keywords="prescription-only medicines", keywords="internet", keywords="theory of planned behavior", keywords="interviews", keywords="thematic analysis", keywords="the United Kingdom", abstract="Background: Many people in the United Kingdom are turning to the internet to obtain prescription-only medicines (POMs). This introduces substantial concerns for patient safety, particularly owing to the risk of buying fake medicines. To help reduce the risks to patient safety, it is important to understand why people buy POMs on the web in the first place. Objective: This study aimed to identify why people in the United Kingdom purchase medicines, specifically POMs, from the internet, and their perceptions of risks posed by the availability of fake medicines on the web. Methods: Semistructured interviews were conducted with adults from the United Kingdom who had previously purchased medicines on the web. Purposive sampling was adopted using various methods to achieve diversity in participants' experiences and demographics. The recruitment was continued until data saturation was reached. Thematic analysis was employed, with the theory of planned behavior acting as a framework to develop the coding of themes. Results: A total of 20 participants were interviewed. Participants had bought various types of POMs or medicines with the potential to be misused or that required a higher level of medical oversight (eg, antibiotics and controlled medicines). Participants demonstrated awareness of the presence and the risks of fake medicines available on the internet. The factors that influence participants' decision to buy medicines on the web were grouped into themes, including the advantages (avoiding long waiting times, bypassing gatekeepers, availability of medicines, lower costs, convenient process, and privacy), disadvantages (medicine safety concerns, medicine quality concerns, higher costs, web-based payment risks, lack of accountability, and engaging in an illegal behavior) of purchasing medicines on the web, social influencing factors (interactions with health care providers, other consumers' reviews and experiences, word of mouth by friends, and influencers' endorsement), barriers (general barriers and website-specific barriers) and facilitators (facilitators offered by the illegal sellers of medicines, facilitators offered by internet platforms, COVID-19 outbreak as a facilitating condition, and participants' personality) of the purchase, and factors that lead people to trust the web-based sellers of medicines (website features, product appearance, and past experience). Conclusions: In-depth insights into what drives people in the United Kingdom to buy medicines on the web could enable the development of effective and evidence-based public awareness campaigns that warn consumers about the risks of buying fake medicines from the internet. The findings enable researchers to design interventions to minimize the purchasing of POMs on the web. A limitation of this study is that although the interviews were in-depth and data saturation was reached, the findings may not be generalizable, as this was a qualitative study. However, the theory of planned behavior, which informed the analysis, has well-established guidelines for developing a questionnaire for a future quantitative study. ", doi="10.2196/42887", url="https://formative.jmir.org/2023/1/e42887", url="http://www.ncbi.nlm.nih.gov/pubmed/36795460" } @Article{info:doi/10.2196/42507, author="Kassam, Iman and Ilkina, Daria and Kemp, Jessica and Roble, Heba and Carter-Langford, Abigail and Shen, Nelson", title="Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review", journal="J Med Internet Res", year="2023", month="Feb", day="10", volume="25", pages="e42507", keywords="consent", keywords="electronic consent", keywords="eConsent", keywords="personal health information", keywords="patient engagement", keywords="digital health", keywords="health IT", keywords="privacy", keywords="eHealth", keywords="data sharing", keywords="artificial intelligence", abstract="Background: The increasing integration of digital health tools into care may result in a greater flow of personal health information (PHI) between patients and providers. Although privacy legislation governs how entities may collect, use, or share PHI, such legislation has not kept pace with digital health innovations, resulting in a lack of guidance on implementing meaningful consent. Understanding patient perspectives when implementing meaningful consent is critical to ensure that it meets their needs. Consent for research in the context of digital health is limited. Objective: This state-of-the-art review aimed to understand the current state of research as it relates to patient perspectives on digital health consent. Its objectives were to explore what is known about the patient perspective and experience with digital health consent and provide recommendations on designing and implementing digital health consent based on the findings. Methods: A structured literature search was developed and deployed in 4 electronic databases---MEDLINE, IEEE Xplore, Scopus, and Web of Science---for articles published after January 2010. The initial literature search was conducted in March 2021 and updated in March 2022. Articles were eligible for inclusion if they discussed electronic consent or consent, focused on the patient perspective or preference, and were related to digital health or digital PHI. Data were extracted using an extraction template and analyzed using qualitative content analysis. Results: In total, 75 articles were included for analysis. Most studies were published within the last 5 years (58/75, 77\%) and conducted in a clinical care context (33/75, 44\%) and in the United States (48/75, 64\%). Most studies aimed to understand participants' willingness to share PHI (25/75, 33\%) and participants' perceived usability and comprehension of an electronic consent notice (25/75, 33\%). More than half (40/75, 53\%) of the studies did not describe the type of consent model used. The broad open consent model was the most explored (11/75, 15\%). Of the 75 studies, 68 (91\%) found that participants were willing to provide consent; however, their consent behaviors and preferences were context-dependent. Common patient consent requirements included clear and digestible information detailing who can access PHI, for what purpose their PHI will be used, and how privacy will be ensured. Conclusions: There is growing interest in understanding the patient perspective on digital health consent in the context of providing clinical care. There is evidence suggesting that many patients are willing to consent for various purposes, especially when there is greater transparency on how the PHI is used and oversight mechanisms are in place. Providing this transparency is critical for fostering trust in digital health tools and the innovative uses of data to optimize health and system outcomes. ", doi="10.2196/42507", url="https://www.jmir.org/2023/1/e42507", url="http://www.ncbi.nlm.nih.gov/pubmed/36763409" } @Article{info:doi/10.2196/39391, author="Wathne, Hege and Morken, Margreta Ingvild and Storm, Marianne and Huseb{\o}, Lunde Anne Marie", title="Designing a Future eHealth Service for Posthospitalization Self-management Support in Long-term Illness: Qualitative Interview Study", journal="JMIR Hum Factors", year="2023", month="Feb", day="6", volume="10", pages="e39391", keywords="colorectal cancer", keywords="eHealth service", keywords="heart failure", keywords="noncommunicable diseases", keywords="self-management", keywords="qualitative research", keywords="mobile phone", abstract="Background: For patients with noncommunicable diseases (NCDs; eg, heart failure [HF] and colorectal cancer [CRC]), eHealth interventions could meet their posthospital discharge needs and strengthen their ability to self-manage. However, inconclusive evidence exists regarding how to design eHealth services to meet the complex needs of patients. To foster patient acceptability and ensure the successful development and implementation of eHealth solutions, it is beneficial to include different stakeholders (ie, patients and health care professionals) in the design and development phase of such services. The involvement of different stakeholders could contribute to ensuring feasible, acceptable, and usable solutions and that eHealth services are developed in response to users' supportive care needs when transitioning to home after hospitalization. This study is the first step of a larger complex intervention study aimed at meeting the postdischarge needs of 2 NCD populations. Objective: This study aimed to explore the perspectives of patients with HF and CRC and health care professionals on patient self-management needs following hospital discharge and investigate how a future nurse-assisted eHealth service could be best designed to foster patient acceptability, support self-management, and smooth the transition from hospital to home. Methods: A qualitative, explorative, and descriptive approach was used. We conducted 38 semistructured interviews with 10 patients with HF, 9 patients surgically treated for CRC with curative intent, 6 registered nurses recruited as nurse navigators of a planned eHealth service, and 13 general practitioners experienced in HF and CRC treatment and follow-up care. Patients were recruited conveniently from HF and CRC outpatient clinics, and the nurses were recruited from the cardiology and gastro-surgical departments at a university hospital in the southwest of Norway. The general practitioners were recruited from primary care in surrounding municipalities. Semistructured interview guides were used for data collection, and the data were analyzed using thematic analysis. Results: In total, 3 main themes were derived from the data analysis: expecting information, reassurance, and guidance when using eHealth for HF and CRC self-management; expecting eHealth to be comprehensible, supportive, and knowledge promoting; and recognizing both the advantages and disadvantages of eHealth for HF and CRC self-management. The data generated from this interview study depicted the diverse needs for self-management support of patients with CRC and HF after hospital discharge. In addition, valuable suggestions were identified regarding the design and content of the eHealth service. However, participants described both possible advantages and disadvantages of a remote eHealth service. Conclusions: This study is the first step in the development of an eHealth service for posthospitalization self-management support for long-term illnesses. It concerns patients' supportive care needs and user requirements of an eHealth service. The findings of this study may add value to the planning and development of eHealth interventions for patients with NCDs. ", doi="10.2196/39391", url="https://humanfactors.jmir.org/2023/1/e39391", url="http://www.ncbi.nlm.nih.gov/pubmed/36745492" } @Article{info:doi/10.2196/39325, author="Hu, Lei and Jin, Xiaoyuan and Li, Yundong and Wang, Hongmei and Yang, Dan and Zhang, Ziqing and He, Xiaoyu and Liao, Jing and Chen, Weiju and Gong, Ni", title="Perspective of People With Type 2 Diabetes Toward Self-management: Qualitative Study Based on Web Crawler Data", journal="J Med Internet Res", year="2023", month="Feb", day="2", volume="25", pages="e39325", keywords="diabetes", keywords="health management", keywords="self-management", keywords="health education", keywords="patient needs", abstract="Background: The diabetes disease burden in China is heavy, and medical standards such as diabetes guidelines are the core reference guidelines for diabetes management for health care providers and patients. However, patients' guideline compliance is too low, which correlates with the gap between guidelines and patients' self-management needs. Incorporating patient needs into the guideline development would reduce this gap. Objective: We sought to capture the needs of patients with diabetes for self-management in everyday situations and to clarify the contradictions and misalignments between medical standards, such as guidelines, and patient needs. Methods: This study collected crawler-based data from 4 online health communities. We selected 1605 text records collected from Chinese patients with diabetes between March 2020 and July 2020 for analysis. The text analysis applied grounded theory to separate issues that concerned patients into 3 themes, 7 subthemes, and 25 entries. Results: Altogether, 69.03\% (1108/1605) of texts were related to issues concerning disease treatment (theme B) and mainly inquired about medication use (B2 and B3; 686/1108, 61.91\%), including medication choice, change in medication administration, side effects, and postmedication effects. In addition, 222 (N=1605, 13.8\%) texts (theme A) concerned the explanation of disease etiology and knowledge of diabetes, and 275 (N=1605, 17.1\%) texts (theme C) discussed lifestyle changes and various restrictions on life brought about by the disease. Conclusions: Our findings suggest an urgent need to improve diabetes health education and guideline development strategies and to develop health management strategies from a patient perspective to bridge the misalignment between patient needs and current medical standards. ", doi="10.2196/39325", url="https://www.jmir.org/2023/1/e39325", url="http://www.ncbi.nlm.nih.gov/pubmed/36729569" } @Article{info:doi/10.2196/40105, author="Deshpande, Nikita and Arora, M. Vineet and Vollbrecht, Hanna and Meltzer, O. David and Press, Valerie", title="eHealth Literacy and Patient Portal Use and Attitudes: Cross-sectional Observational Study", journal="JMIR Hum Factors", year="2023", month="Jan", day="27", volume="10", pages="e40105", keywords="health literacy", keywords="patient portal", keywords="COVID-19", keywords="health technology", keywords="inpatients", keywords="digital health literacy", keywords="awareness", keywords="use", keywords="engagement", keywords="attitudes", keywords="hospitalized patients", keywords="access", keywords="accessibility", keywords="perception", keywords="health care delivery", abstract="Background: Throughout the COVID-19 pandemic, patient portals have become more widely used tools of patient care delivery. However, not all individuals have equivalent access or ability to use patient portals. Objective: The aim of this study is to evaluate the relationships between eHealth literacy (eHL) and patient portal awareness, use, and attitudes among hospitalized patients. Methods: Inpatients completed patient portal surveys; eHL was assessed (eHealth Literacy Scale). Multivariable logistic regression analyses adjusted for age, self-reported race, gender, and educational attainment were completed with significance at P<.006 (Bonferroni correction). Results: Among 274 participants, most identified as Black (n=166, 61\%) and female (n=140, 51\%), mean age was 56.5 (SD 16.7) years, and 178 (65\%) reported some college or higher educational attainment. One-quarter (n=79, 28\%) had low eHL (mean 27, SD 9.5), which was associated with lower odds of portal access awareness (odds ratio 0.11, 95\% CI 0.05-0.23; P<.001), having ever used portals (odds ratio 0.19, 95\% CI 0.10-0.36; P<.001), less perceived usefulness of portals (odds ratio 0.20, 95\% CI 0.10-0.38; P=.001), and lower likelihood of planning to use portals in the coming years (odds ratio 0.12, 95\% CI 0.06-0.25; P<.001). As time through the COVID-19 pandemic passed, there was a trend toward increased perceived usefulness of patient portals (53\% vs 62\%, P=.08), but average eHL did not increase through time (P=.81). Conclusions: Low eHL was associated with less awareness, use, and perceived usefulness of portals. Perceived usefulness of portals likely increased through the COVID-19 pandemic, but patients' eHL did not. Interventions tailored for patients with low eHL could ensure greater equity in health care delivery through the COVID-19 pandemic. ", doi="10.2196/40105", url="https://humanfactors.jmir.org/2023/1/e40105", url="http://www.ncbi.nlm.nih.gov/pubmed/36705947" } @Article{info:doi/10.2196/38096, author="Davat, Ambre and Martin-Juchat, Fabienne", title="Patients' Information Needs Related to a Monitoring Implant for Heart Failure: Co-designed Study Based on Affect Stories", journal="JMIR Hum Factors", year="2023", month="Jan", day="23", volume="10", pages="e38096", keywords="co-design", keywords="affect stories", keywords="mixed methods study", keywords="heart failure", keywords="medical implantable device", keywords="mobile health", keywords="mHealth", keywords="remote monitoring", keywords="quantified self", keywords="telehealth", abstract="Background: RealWorld4Clinic is a European consortium that is currently developing an implantable monitoring device for acute heart failure prevention. Objective: This study aimed to identify the main issues and information needs related to this new cardiac implant from the patients' perspective. Methods: A total of 3 patient collaborators were recruited to help us design the study. During 4 remotely held meetings (each lasting for 2 hours), we defined the main questions and hypotheses together. Next, 26 additional interviews were conducted remotely to test these hypotheses. During both phases, we used affect stories, which are life narratives focusing on affect and the relationship between patients and the care ecosystem, to highlight the main social issues that should be addressed by the research according to the patients. Results: Context of diagnosis, age, and severity of illness strongly influence patient experience. However, these variables do not seem to influence the choice regarding being implanted, which relies mostly on the individual patient's trust in their physicians. It seems that the major cause of anxiety for the patient is not the implant but the disease itself, although some people may initially be concerned over the idea of becoming a cyborg. Remote monitoring of cardiac implants should draw on existing remote disease management programs focusing on a long-term relationship between the patient and their medical team. Conclusions: Co-design with affect stories is a useful method for quickly identifying the main social issues related to information about a new health technology. ", doi="10.2196/38096", url="https://humanfactors.jmir.org/2023/1/e38096", url="http://www.ncbi.nlm.nih.gov/pubmed/36689266" } @Article{info:doi/10.2196/39034, author="Bin, Jia Kaio and Santana Alves, Gabriela Patr{\'i}cia and Costa, Raquel and Eiras, Cruz Paula and Nader de Araujo, Luciano and Pereira, Rodrigues Antonio Jos{\'e} and Carvalho, Carlos and Malik, Maria Ana", title="User Experience Regarding Digital Primary Health Care in Santar{\'e}m, Amazon: Evaluation of Patient Satisfaction and Doctor's Feedback", journal="JMIR Form Res", year="2023", month="Jan", day="11", volume="7", pages="e39034", keywords="telemedicine", keywords="primary health care", keywords="user's experience", keywords="Amazon", keywords="digital health", keywords="pilot", keywords="patient", keywords="pilot model", keywords="pandemic", keywords="medical care", keywords="assist", keywords="urban", keywords="community", keywords="Brazil", keywords="technology", keywords="consultation", keywords="physician", keywords="survey", abstract="Background: With the arrival of the pandemic, telemedicine has been widely used to provide medical care and can be used to assist patients in regions far from urban centers that are difficult to access, such as riverside communities in the Brazilian Amazon region. A telemedicine project connecting S{\~a}o Paulo, a mega-metropolis, to Paysand{\'u}, a riverside district in the Amazon, was built to serve the local population where access to the nearest medical care is 6 hours away by speedboat. Objective: This study aims to assess the feedback from patients and doctors regarding the use of telemedicine in outpatient care at Paysand{\'u}, a riverside district in the Amazon. Methods: This is a single-center study following the guidelines ``Evaluating digital health products'' from Public Health England, with local adaptations for the project and the Brazilian reality, that was conducted between S{\~a}o Paulo and Santar{\'e}m in Brazil. A survey was carried out with patients who were treated by a doctor in the city of S{\~a}o Paulo, about 2500 km from the local basic health unit, between September 27 to December 15, 2021. At the end of each teleconsultation, the attending physician answered an administrative survey form, and the patient answered a satisfaction survey. Results: A total of 111 patients completed the satisfaction survey from a total of 220 consultations carried out during the period (95\% CI margin error 0.22\%). According to the survey, more than 95\% of patients were satisfied with the service, 87.4\% (n=97) had previous experience with videoconferencing, and 76.6\% (n=85) reported that their demand was fully solved. Additionally, according to the hired doctor's feedback, the average duration of the consultations was between 15 and 20 minutes. Of the 220 teleconsultations performed, 90.9\% (n=200) of the demands were solved with support from the local health team, and 99.1\% (n=218) of the appointments had a problem with audio or video. Conclusions: This teleconsultation project between S{\~a}o Paulo and Paysand{\'u} showed that it is possible to offer medical care from more developed locations to communities far from urban centers, as is the case with Paysand{\'u} District. Beyond the feasibility of the infrastructure, acceptance and satisfaction among patients were high. This health care supply model has proven to be functional and should be expanded nationally or perhaps internationally to regions lacking medical assistance. Escalation of the project does not seem too difficult once infrastructure issues are solved. ", doi="10.2196/39034", url="https://formative.jmir.org/2023/1/e39034", url="http://www.ncbi.nlm.nih.gov/pubmed/36630164" } @Article{info:doi/10.2196/43533, author="Guo, Shanshan and Dang, Yuanyuan and Vogel, Doug and She, Bofei", title="The Effect of Offline Medical Resource Distribution on Online Physician-Patient Interaction: Empirical Study With Online and Offline Data", journal="JMIR Form Res", year="2023", month="Jan", day="10", volume="7", pages="e43533", keywords="medical resources", keywords="online health community", keywords="physician-patient interaction", keywords="online and offline", keywords="social network analysis", abstract="Background: The relationship between online health communities (OHCs) and offline medical care is unclear because both provide physician-patient interaction services and channels. Taking advantage of information and communication technology, patients have been using OHCs widely. However, some physical medical resources (such as hospital beds and medical devices) cannot be replicated by information and communication technologies. Therefore, it is worth studying how offline medical resources affect physician-patient interactions in OHCs and how OHCs help to solve resource scarcity and the uneven distribution of traditional medical treatment. Objective: This study aimed to support the notion that physician-patient consultations in OHCs are influenced by the objective distribution of offline health care capital (accessibility and availability) and to provide suggestions for the allocation of medical resources in practice through the judicious use of offline and online channels. Methods: The empirical data in this study were collected from both online and offline channels. The offline data include 9 years (2006-2014) of medical resource statistics of 31 provincial administrative regions in mainland China. Moreover, data regarding the geolocation-based physician-patient interaction network in the OHC were also collected. The online data come from one of China's largest OHCs. We obtained 92,492 telephone consultation records of 6006 physicians using an automatic web crawler program. Social network analysis was used to visualize the descriptive statistics of the offline geolocation-based physician-patient interaction network in the OHC. A regression model with a squared variable was applied to analyze online and offline empirical data to further test our hypothesis. Two types of robustness tests were used to increase the reliability of the test results of the initial model. Results: The results of our social network analysis show that there is a uniform geographic distribution of patients who use OHCs, whereas the physician relies more on geographic advantage (eg, a higher medical resource capability). Moreover, the empirical results of the regression model support the notion that physician-patient telephone consultations are positively influenced by physicians' online contributions ($\beta$contribution=.210; P<.001) and capital availability ($\beta$bed=.935; P=.07), and, interestingly, spatial accessibility has an inverted U--shaped effect ($\beta$distance=.199; P<.001 and $\beta$distance2=--.00449; P=.008). The results indicate that the use of OHCs, although constrained by offline medical resources, provides a channel for offline resources to flow from areas with high availability to those with low availability. Conclusions: This study explores the relationship between online and offline channels by investigating online physician-patient interactions and offline medical resources. In particular, this study analyzes the impact of offline channels on online channels and verifies the possibility of OHC capital use shifting from a high-availability area to a low-availability area. In addition, it provides a theoretical and practical basis for understanding the interaction of online and offline channels of medical care. ", doi="10.2196/43533", url="https://formative.jmir.org/2023/1/e43533", url="http://www.ncbi.nlm.nih.gov/pubmed/36626204" } @Article{info:doi/10.2196/38848, author="Lu, Xinyi", title="The Effects of Patient Health Information Seeking in Online Health Communities on Patient Compliance in China: Social Perspective", journal="J Med Internet Res", year="2023", month="Jan", day="9", volume="25", pages="e38848", keywords="online health communities", keywords="OHCs", keywords="health information seeking", keywords="social presence", keywords="social support", keywords="perceived responsiveness", abstract="Background: Online health communities (OHCs) can alleviate the uneven distribution and use of medical resources and severe hospital congestion. Patients may seek health information through OHCs before or after visiting physicians, which may affect their cognition, health literacy, decision-making preferences, and health-related behaviors such as compliance. Social factors (social support, social presence, and responsiveness) are closely related to patients' health information--seeking behavior and are significantly considered in OHCs. Objective: This study aimed to explore the effects of patients' health information--seeking behavior (way and effectiveness) on compliance with physicians from the perspectives of patients' perceived social support, social presence, and responsiveness. Methods: This study established a research model from the perspective of social information processing by using the social exchange theory. An anonymous questionnaire survey was conducted with several Chinese OHCs to collect data. Partial least squares and structural equation modeling were adopted to test the hypotheses and develop the model. Results: This study received 403 responses, of which 332 were valid, giving a validity rate of 82.4\% (332/403). Among the sample, 78.6\% (261/332) of the individuals were aged between 20 and 40 years, 59.3\% (197/332) were woman, 69.9\% (232/332) lived in urban areas, and 50\% (166/332) had at least a bachelor's degree. The reliability, convergent validity, and discriminant validity were acceptable. Both the way and effectiveness of patients seeking health information through OHCs have a positive impact on their compliance through the mediation of their perceived social support, social presence, and responsiveness from OHCs and other users, and patient compliance can be improved by guiding patient health information--seeking behavior in OHCs from a social perspective. Conclusions: This study proposes a research model to corroborate that patient health information--seeking behavior (way and effectiveness) in OHCs exerts positive effects on patient compliance with the treatment and physician's advice and provides suggestions for patients, physicians, and OHC service providers in China to help guide patients' health-related behaviors through OHCs to improve patient compliance, patient satisfaction, treatment efficiency, and health outcomes. ", doi="10.2196/38848", url="https://www.jmir.org/2023/1/e38848", url="http://www.ncbi.nlm.nih.gov/pubmed/36622741" } @Article{info:doi/10.2196/40976, author="Baltaxe, Erik and Hsieh, Wen Hsin and Roca, Josep and Cano, Isaac", title="The Assessment of Medical Device Software Supporting Health Care Services for Chronic Patients in a Tertiary Hospital: Overarching Study", journal="J Med Internet Res", year="2023", month="Jan", day="4", volume="25", pages="e40976", keywords="chronic patients", keywords="digital health", keywords="health technology assessment", keywords="implementation research", keywords="integrated care", abstract="Background: Innovative digital health tools are increasingly being evaluated and, in some instances, integrated at scale into health systems. However, the applicability of assessment methodologies in real-life scenarios to demonstrate value generation and consequently foster sustainable adoption of digitally enabled health interventions has some bottlenecks. Objective: We aimed to build on the process of premarket assessment of 4 digital health interventions piloted at the Hospital Clinic de Barcelona (HCB), as well as on the analysis of current medical device software regulations and postmarket surveillance in the European Union and United States in order to generate recommendations and lessons learnt for the sustainable adoption of digitally enabled health interventions. Methods: Four digital health interventions involving prototypes were piloted at the HCB (studies 1-4). Cocreation and quality improvement methodologies were used to consolidate a pragmatic evaluation method to assess the perceived usability and satisfaction of end users (both patients and health care professionals) by means of the System Usability Scale and the Net Promoter Score, including general questions about satisfaction. Analyses of both medical software device regulations and postmarket surveillance in the European Union and United States (2017-2021) were performed. Finally, an overarching analysis on lessons learnt was conducted considering 4 domains (technical, clinical, usability, and cost), as well as differentiating among 3 different eHealth strategies (telehealth, integrated care, and digital therapeutics). Results: Among the participant stakeholders, the System Usability Scale score was consistently higher in patients (studies 1, 2, 3, and 4: 78, 67, 56, and 76, respectively) than in health professionals (studies 2, 3, and 4: 52, 43, and 54, respectively). In general, use of the supporting digital health tools was recommended more by patients (studies 1, 2, 3, and 4: Net Promoter Scores of ?3\%, 31\%, ?21\%, and 31\%, respectively) than by professionals (studies 2, 3, and 4: Net Promoter Scores of ?67\%, 1\%, and ?80\%, respectively). The overarching analysis resulted in pragmatic recommendations for the digital health evaluation domains and the eHealth strategies considered. Conclusions: Lessons learnt on the digitalization of health resulted in practical recommendations that could contribute to future deployment experiences. ", doi="10.2196/40976", url="https://www.jmir.org/2023/1/e40976", url="http://www.ncbi.nlm.nih.gov/pubmed/36598817" } @Article{info:doi/10.2196/40357, author="Scott, F. Andrew and Ayers, Stephanie and Pluye, Pierre and Grad, Roland and Sztramko, Richard and Marr, Sharon and Papaioannou, Alexandra and Clark, Sandra and Gerantonis, Patricia and Levinson, J. Anthony", title="Impact and Perceived Value of iGeriCare e-Learning Among Dementia Care Partners and Others: Pilot Evaluation Using the IAM4all Questionnaire", journal="JMIR Aging", year="2022", month="Dec", day="22", volume="5", number="4", pages="e40357", keywords="dementia", keywords="caregiver", keywords="web-based education", keywords="internet", keywords="consumer health information", keywords="feedback", keywords="perception", keywords="survey", keywords="questionnaire", keywords="patient education", keywords="health education", keywords="care partner", keywords="caregiving", keywords="spousal care", keywords="informal care", keywords="Alzheimer", keywords="cognitive impairment", keywords="cognitively impaired", keywords="Lewy body", keywords="gerontology", keywords="geriatric", abstract="Background: Care partners of people living with dementia may benefit from web-based education. We developed iGeriCare, an award-winning internet-based platform with 12 multimedia e-learning lessons about dementia. Objective: Our objective was to evaluate users' perceptions of impact. Methods: From March 17, 2021 to May 16, 2022, data were collected upon lesson completion. We used the content-validated Information Assessment Method for all (IAM4all) for patients and the public adapted for dementia care partners. The IAM4all questionnaire assesses outcomes of web-based consumer health information. Responses were collected using SurveyMonkey, and data were analyzed using IBM SPSS Statistics (version 28). Results: A total of 409 responses were collected, with 389 (95.1\%) survey respondents completing the survey. Of 409 respondents, 179 (43.8\%) identified as a family or friend care partner, 84 (20.5\%) identified as an individual concerned they may have mild cognitive impairment or dementia, 380 (92.9\%) identified the lesson as relevant or very relevant, and 403 (98.5\%) understood the lesson well or very well. Over half of respondents felt they were motivated to learn more, they were taught something new, or they felt validated in what they do, while some felt reassured or felt that the lesson refreshed their memory. Of 409 respondents, 401 (98\%) said they would use the information, in particular, to better understand something, discuss the information with someone else, do things differently, or do something. Conclusions: Users identified iGeriCare as relevant and beneficial and said that they would use the information. To our knowledge, this is the first time the IAM4all questionnaire has been used to assess patient and caregiver feedback on internet-based dementia education resources. A randomized controlled trial to study feasibility and impact on caregiver knowledge, self-efficacy, and burden is in progress. ", doi="10.2196/40357", url="https://aging.jmir.org/2022/4/e40357", url="http://www.ncbi.nlm.nih.gov/pubmed/36150051" } @Article{info:doi/10.2196/42941, author="Wu, Dezhi and Lowry, Benjamin Paul and Zhang, Dongsong and Tao, Youyou", title="Patient Trust in Physicians Matters---Understanding the Role of a Mobile Patient Education System and Patient-Physician Communication in Improving Patient Adherence Behavior: Field Study", journal="J Med Internet Res", year="2022", month="Dec", day="20", volume="24", number="12", pages="e42941", keywords="mobile health", keywords="mHealth", keywords="trust", keywords="patient adherence", keywords="mobile patient education system", keywords="MPES", keywords="patient-physician communication", keywords="theory of planned behavior", keywords="TPB", keywords="patient-centered care", keywords="mobile phone", abstract="Background: The ultimate goal of any prescribed medical therapy is to achieve desired outcomes of patient care. However, patient nonadherence has long been a major problem detrimental to patient health, and thus is a concern for all health care providers. Moreover, nonadherence is extremely costly for global medical systems because of unnecessary complications and expenses. Traditional patient education programs often serve as an intervention tool to increase patients' self-care awareness, disease knowledge, and motivation to change patient behaviors for better adherence. Patient trust in physicians, patient-physician relationships, and quality of communication have also been identified as critical factors influencing patient adherence. However, little is known about how mobile patient education technologies help foster patient adherence. Objective: This study aimed to empirically investigate whether and how a mobile patient education system (MPES) juxtaposed with patient trust can increase patient adherence to prescribed medical therapies. Methods: This study was conducted based on a field survey of 125 patients in multiple states in the United States who have used an innovative mobile health care system for their health care education and information seeking. Partial least squares techniques were used to analyze the collected data. Results: The results revealed that patient-physician communication and the use of an MPES significantly increase patients' trust in their physicians. Furthermore, patient trust has a prominent effect on patient attitude toward treatment adherence, which in turn influences patients' behavioral intention and actual adherence behavior. Based on the theory of planned behavior, the results also indicated that behavioral intention, response efficacy, and self-efficacy positively influenced patients' actual treatment adherence behavior, whereas descriptive norms and subjective norms do not play a role in this process. Conclusions: Our study is one of the first that examines the relationship between patients who actively use an MPES and their trust in their physicians. This study contributes to this context by enriching the trust literature, addressing the call to identify key patient-centered technology determinants of trust, advancing the understanding of patient adherence mechanisms, adding a new explanation of the influence of education mechanisms delivered via mobile devices on patient adherence, and confirming that the theory of planned behavior holds in this patient adherence context. ", doi="10.2196/42941", url="https://www.jmir.org/2022/12/e42941", url="http://www.ncbi.nlm.nih.gov/pubmed/36538351" } @Article{info:doi/10.2196/37272, author="Acoba, D. Jared and Yin, Chelsea and Meno, Michael and Abe, Justin and Pagano, Ian and Tamashiro, Sharon and Fujinaga, Kristy and Braun-Inglis, Christa and Fukui, Jami", title="Racial Disparities in Patient-Provider Communication During Telehealth Visits Versus Face-to-face Visits Among Asian and Native Hawaiian and Other Pacific Islander Patients With Cancer: Cross-sectional Analysis", journal="JMIR Cancer", year="2022", month="Dec", day="9", volume="8", number="4", pages="e37272", keywords="cancer", keywords="telemedicine", keywords="telehealth", keywords="eHealth", keywords="racial disparities", keywords="race", keywords="racial", keywords="Asia", keywords="Asian", keywords="Hawaii", keywords="Hawaiian", keywords="Native Hawaiian", keywords="Pacific Islander", keywords="cross-sectional", keywords="satisfaction", keywords="oncology", keywords="racially diverse", keywords="patient-physician communication", abstract="Background: Telehealth visits increase patients' access to care and are often rated as ``just as good'' as face-to-face visits by oncology patients. Telehealth visits have become increasingly more common in the care of patients with cancer since the advent of the COVID-19 pandemic. Asians and Pacific Islanders are two of the fastest growing racial groups in the United States, but there are few studies assessing patient satisfaction with telemedicine among these two racial groups. Objective: Our objective was to compare satisfaction with communication during telehealth visits versus face-to-face visits among oncology patients, with a specific focus on Asian patients and Native Hawaiian and other Pacific Islander (NHOPI) patients. Methods: We surveyed a racially diverse group of patients who were treated at community cancer centers in Hawaii and had recently experienced a face-to-face visit or telehealth visit. Questions for assessing satisfaction with patient-physician communication were adapted from a previously published study of cancer survivors. Variables that impact communication, including age, sex, household income, education level, and cancer type and stage, were captured. Multivariable logistic models for patient satisfaction were created, with adjustments for sociodemographic factors. Results: Participants who attended a face-to-face visit reported higher levels of satisfaction in all communication measures than those reported by participants who underwent a telehealth encounter. The univariate analysis revealed lower levels of satisfaction during telehealth visits among Asian participants and NHOPI participants compared to those among White participants for all measures of communication (eg, when asked to what degree ``[y]our physician listened carefully to you''). Asian patients and NHOPI patients were significantly less likely than White patients to strongly agree with the statement (P<.004 and P<.007, respectively). Racial differences in satisfaction with communication persisted in the multivariate analysis even after adjusting for sociodemographic factors. There were no significant racial differences in communication during face-to-face visits. Conclusions: Asian patients and NHOPI patients were significantly less content with patient-physician communication during telehealth visits when compared to White patients. This difference among racial groups was not seen in face-to-face visits. The observation that telehealth increases racial disparities in health care satisfaction should prompt further exploration. ", doi="10.2196/37272", url="https://cancer.jmir.org/2022/4/e37272", url="http://www.ncbi.nlm.nih.gov/pubmed/36485021" } @Article{info:doi/10.2196/37972, author="Gruebner, Oliver and van Haasteren, Afua and Hug, Anna and Elayan, Suzanne and Sykora, Martin and Albanese, Emiliano and Naslund, John and Wolf, Markus and Fadda, Marta and von Rhein, Michael", title="Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review", journal="J Med Internet Res", year="2022", month="Dec", day="6", volume="24", number="12", pages="e37972", keywords="digital place", keywords="pediatric diagnoses", keywords="conditions", keywords="disability", keywords="neuromuscular", keywords="information and support seeking", keywords="online", keywords="social media", keywords="peer support", keywords="lived experience", keywords="parents", keywords="children", keywords="youth", keywords="review", keywords="scoping review", keywords="trauma", keywords="caregivers", abstract="Background: Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions. As a result, information (eg, on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digital platforms such as websites or social media to derive social support, usually from other patients and caregivers who share their lived experiences, challenges, and successes on these platforms. However, gaps remain in our understanding of platforms that are most frequently used or preferred among parents and caregivers of children with disabilities. In particular, it is not clear what factors primarily drive or discourage engagement with these digital tools and what the main ethical considerations are in relation to these tools. Objective: We aimed to (1) identify prominent digital platforms used by parents or caregivers of children with disabilities; (2) explore the theoretical contexts and reasons for digital platform use, as well as the experiences made with using these platforms reported in the included studies; and (3) identify any privacy and ethical concerns emerging in the available literature in relation to the use of these platforms. Methods: We conducted a scoping review of 5 academic databases of English-language articles published within the last 10 years for diseases with childhood onset disability and self-help or parent/caregiver-led digital platforms. Results: We identified 17 papers in which digital platforms used by parents of affected children predominantly included social media elements but also search engines, health-related apps, and medical websites. Information retrieval and social support were the main reasons for their utilization. Nearly all studies were exploratory and applied either quantitative, qualitative, or mixed methods. The main ethical concerns for digital platform users included hampered access due to language barriers, privacy issues, and perceived suboptimal advice (eg, due to missing empathy of medical professionals). Older and non--college-educated individuals and ethnic minorities appeared less likely to access information online. Conclusions: This review showed that limited scientifically sound knowledge exists on digital platform use and needs in the context of disabling conditions in children, as the evidence consists mostly of exploratory studies. We could highlight that affected families seek information and support from digital platforms, as health care systems seem to be insufficient for satisfying knowledge and support needs through traditional channels. ", doi="10.2196/37972", url="https://www.jmir.org/2022/12/e37972", url="http://www.ncbi.nlm.nih.gov/pubmed/36472896" } @Article{info:doi/10.2196/38561, author="van der Smissen, Doris and Rietjens, C. Judith A. and van Dulmen, Sandra and Drenthen, Ton and Vrijaldenhoven-Haitsma, D. F. Ragnhild M. and Wulp, Marijke and van der Heide, Agnes and Korfage, J. Ida", title="The Web-Based Advance Care Planning Program ``Explore Your Preferences for Treatment and Care'': Development, Pilot Study, and Before-and-After Evaluation", journal="J Med Internet Res", year="2022", month="Dec", day="2", volume="24", number="12", pages="e38561", keywords="advance care planning", keywords="internet-based intervention", keywords="decision aids", keywords="patient education", keywords="eHealth", keywords="health communication", keywords="patient-centered care", keywords="chronic disease", abstract="Background: Web-based advance care planning (ACP) programs may support patients in thinking about and discussing their preferences for future treatment and care. However, they are not widely available, and only a limited number of programs are evidence based. Objective: We aimed to develop and evaluate an evidence-based, interactive web-based ACP program that guides users through the process of thinking about, discussing, and recording of preferences for treatment and care. Methods: The program ``Explore your preferences for treatment and care'' was developed, pilot-tested on feasibility, and subsequently evaluated; engagement in ACP was assessed before program completion and 2 months after program completion using the ACP Engagement Survey (score 1-5) among 147 persons with chronic disease. Usability (score 0-100) and user satisfaction (score 1-5) were also assessed. Results: ACP engagement increased from 2.8 before program completion to 3.0 two months after program completion (P<.001); contemplation about ACP increased from 2.6 to 2.8 (P=.003), and readiness for ACP increased from 2.2 to 2.5 (P<.001). No changes were found for knowledge about ACP (3.0-3.2; P=.07) and self-efficacy for ACP (3.8-3.8; P=.25). The program was perceived as usable (mean 70, SD 13), attractive (mean 3.8, SD 0.7), and comprehensible (mean 4.2, SD 0.6). Conclusions: We developed an evidence-based, interactive web-based ACP program in cocreation with patients, relatives, and health care professionals. Before-and-after evaluation showed that the program can support people in taking first steps in ACP and in reflecting on preferences for treatment and care, by guiding them through the process of ACP using a stepwise approach. Participants perceived the program as usable and understandable, and they were satisfied with the program and with the amount of information. Health care professionals may use the program as a tool to start ACP discussions with their patients. The program may increase awareness of ACP. ", doi="10.2196/38561", url="https://www.jmir.org/2022/12/e38561", url="http://www.ncbi.nlm.nih.gov/pubmed/36459410" } @Article{info:doi/10.2196/38003, author="Halkides, Heather and James, G. Tyler and McKee, M. Michael and Meade, A. Michelle and Moran, Christa and Park, Sophia", title="Spotlighting Disability in a Major Electronic Health Record: Michigan Medicine's Disability and Accommodations Tab", journal="JMIR Form Res", year="2022", month="Dec", day="2", volume="6", number="12", pages="e38003", keywords="patients with disabilities", keywords="disability accommodations", keywords="electronic health records", keywords="patient-centered care", keywords="Affordable Care Act", keywords="Americans with Disabilities Act", keywords="disability", keywords="disabilities", keywords="affordable care", keywords="EHR", keywords="accommodation", keywords="minority", keywords="equity", keywords="accessibility", keywords="accessible", keywords="inclusive", keywords="inclusivity", keywords="health care", keywords="health service", keywords="environment", keywords="accommodate", keywords="reporting", keywords="data collection", keywords="barrier", doi="10.2196/38003", url="https://formative.jmir.org/2022/12/e38003", url="http://www.ncbi.nlm.nih.gov/pubmed/36459406" } @Article{info:doi/10.2196/39174, author="Scott Duncan, Therese and Engstr{\"o}m, Jon and Riggare, Sara and H{\"a}gglund, Maria and Koch, Sabine", title="Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers", journal="J Particip Med", year="2022", month="Nov", day="16", volume="14", number="1", pages="e39174", keywords="behaviors", keywords="chronic conditions", keywords="model of illness-related work", keywords="empowerment", keywords="self-management", abstract="Background: Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. Objective: We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. Methods: We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews. Results: A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals. Conclusions: To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective. ", doi="10.2196/39174", url="https://jopm.jmir.org/2022/1/e39174", url="http://www.ncbi.nlm.nih.gov/pubmed/36383418" } @Article{info:doi/10.2196/38088, author="Ankersmid, Wies Jet and Siesling, Sabine and Strobbe, A. Luc J. and Meulepas, M. Johanna and van Riet, A. Yvonne E. and Engels, Noel and Prick, M. Janine C. and The, Regina and Takahashi, Asako and Velting, Mirjam and van Uden-Kraan, F. Cornelia and Drossaert, C. Constance H.", title="Supporting Shared Decision-making About Surveillance After Breast Cancer With Personalized Recurrence Risk Calculations: Development of a Patient Decision Aid Using the International Patient Decision AIDS Standards Development Process in Combination With a Mixed Methods Design", journal="JMIR Cancer", year="2022", month="Nov", day="14", volume="8", number="4", pages="e38088", keywords="patient decision aid", keywords="PtDA", keywords="breast cancer", keywords="surveillance", keywords="risk information", keywords="shared decision-making", keywords="SDM", abstract="Background: Although the treatment for breast cancer is highly personalized, posttreatment surveillance remains one-size-fits-all: annual imaging and physical examination for at least five years after treatment. The INFLUENCE nomogram is a prognostic model for estimating the 5-year risk for locoregional recurrences and second primary tumors after breast cancer. The use of personalized outcome data (such as risks for recurrences) can enrich the process of shared decision-making (SDM) for personalized surveillance after breast cancer. Objective: This study aimed to develop a patient decision aid (PtDA), integrating personalized risk calculations on risks for recurrences, to support SDM for personalized surveillance after curative treatment for invasive breast cancer. Methods: For the development of the PtDA, the International Patient Decision Aids Standards development process was combined with a mixed methods design inspired by the development process of previously developed PtDAs. In the development, 8 steps were distinguished: establishing a multidisciplinary steering group; definition of the end users, scope, and purpose of the PtDA; assessment of the decisional needs of end users; defining requirements for the PtDA; determining the format and implementation strategy for the PtDA; prototyping; alpha testing; and beta testing. The composed steering group convened during regular working-group sessions throughout the development process. Results: The ``Breast Cancer Surveillance Decision Aid'' consists of 3 components that support the SDM process: a handout sheet on which personalized risks for recurrences, calculated using the INFLUENCE-nomogram, can be visualized and which contains an explanation about the decision for surveillance and a login code for a web-based deliberation tool; a web-based deliberation tool, including a patient-reported outcome measure on fear of cancer recurrence; and a summary sheet summarizing patient preferences and considerations. The PtDA was assessed as usable and acceptable during alpha testing. Beta testing is currently ongoing. Conclusions: We developed an acceptable and usable PtDA that integrates personalized risk calculations for the risk for recurrences to support SDM for surveillance after breast cancer. The implementation and effects of the use of the ``Breast Cancer Surveillance Decision Aid'' are being investigated in a clinical trial. ", doi="10.2196/38088", url="https://cancer.jmir.org/2022/4/e38088", url="http://www.ncbi.nlm.nih.gov/pubmed/36374536" } @Article{info:doi/10.2196/39339, author="Lewis, Dana and Salmi, Liz and Staley, Alicia and Harlow, John", title="From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care", journal="J Particip Med", year="2022", month="Nov", day="3", volume="14", number="1", pages="e39339", keywords="patient-centered care", keywords="patient role", keywords="patient involvement", keywords="access to care", keywords="patient-centered outcomes", keywords="co-design", keywords="participatory design", keywords="patient and public involvement", abstract="Background: People with lived health care experiences (often referred to as ``patients'') are increasingly contributing to health care and are most effective when they are involved as partners who can contribute complementary knowledge alongside other stakeholders in health care. Objective: Convening The Center aimed to bring together ``people known as patients''---the center of health care---to address priorities as they defined them. Methods: According to the original project design, an in-person gathering was to be conducted; however, as a result of the COVID-19 pandemic, the in-person gathering was transformed into a series of digital gatherings, including an in-depth interview phase, small-group gatherings, and a collective convening of 25 participants (22 women and 3 men from the United States, India, Costa Rica, Sweden, and Pakistan). Each participant was interviewed on Zoom (Zoom Video Communications Inc), and the interview data were thematically analyzed to design a subsequent small group and then full cohort Zoom sessions. Visual note-taking was used to reinforce a shared understanding of each individual- and group-level conversation. Results: The interviews and gatherings for Convening The Center offered unique perspectives on patient activities in research, health innovation, and problem-solving. This project further developed a novel, two-spectrum framework for assessing different experiences that patients may have or seek to gain, based on what patients actually do, and different levels of patients' involvement, ranging from individual to community to systemic involvement. Conclusions: The descriptors of patients in academic literature typically focus on what health care providers think patients ``are'' rather than on what patients ``do.'' The primary result of this project is a framework for mapping what patients ``do'' and ``where'' they do their work along two spectra: from creating their own projects to contributing to work initiated by others and from working at levels ranging from individual to community to systems. A better understanding of these spectra may enable researchers to more effectively engage and leverage patient expertise in health care research and innovation. ", doi="10.2196/39339", url="https://jopm.jmir.org/2022/1/e39339", url="http://www.ncbi.nlm.nih.gov/pubmed/36326807" } @Article{info:doi/10.2196/36671, author="Pasta, Alessandro and Szatmari, Tiberiu-Ioan and Christensen, H{\o}y Jeppe and Jensen, Juul Kasper and Pontoppidan, Henrik Niels and Sun, Kang and Larsen, Eg Jakob", title="Investigating the Provision and Context of Use of Hearing Aid Listening Programs From Real-world Data: Observational Study", journal="J Med Internet Res", year="2022", month="Oct", day="17", volume="24", number="10", pages="e36671", keywords="personalized medicine", keywords="hearing aids", keywords="data logging", keywords="listening programs", keywords="sound environment", keywords="mobile phone", abstract="Background: Listening programs enable hearing aid (HA) users to change device settings for specific listening situations and thereby personalize their listening experience. However, investigations into real-world use of such listening programs to support clinical decisions and evaluate the success of HA treatment are lacking. Objective: We aimed to investigate the provision of listening programs among a large group of in-market HA users and the context in which the programs are typically used. Methods: First, we analyzed how many and which programs were provided to 32,336 in-market HA users. Second, we explored 332,271 program selections from 1312 selected users to investigate the sound environments in which specific programs were used and whether such environments reflect the listening intent conveyed by the name of the used program. Our analysis was based on real-world longitudinal data logged by smartphone-connected HAs. Results: In our sample, 57.71\% (18,663/32,336) of the HA users had programs for specific listening situations, which is a higher proportion than previously reported, most likely because of the inclusion criteria. On the basis of association rule mining, we identified a primary additional listening program, Speech in Noise, which is frequent among users and often provided when other additional programs are also provided. We also identified 2 secondary additional programs (Comfort and Music), which are frequent among users who get ?3 programs and usually provided in combination with Speech in Noise. In addition, 2 programs (TV and Remote Mic) were related to the use of external accessories and not found to be associated with other programs. On average, users selected Speech in Noise, Comfort, and Music in louder, noisier, and less-modulated (all P<.01) environments compared with the environment in which they selected the default program, General. The difference from the sound environment in which they selected General was significantly larger in the minutes following program selection than in the minutes preceding it. Conclusions: This study provides a deeper insight into the provision of listening programs on a large scale and demonstrates that additional listening programs are used as intended and according to the sound environment conveyed by the program name. ", doi="10.2196/36671", url="https://www.jmir.org/2022/10/e36671", url="http://www.ncbi.nlm.nih.gov/pubmed/36251349" } @Article{info:doi/10.2196/39167, author="Gilding, Justin Anthony and Ho, Nhung and Pope, Elena and Sibbald, Cathryn", title="The Burden of Disease in Alopecia Areata: Canadian Online Survey of Patients and Caregivers", journal="JMIR Dermatol", year="2022", month="Oct", day="6", volume="5", number="4", pages="e39167", keywords="alopecia areata", keywords="quality of life", keywords="burden of disease", keywords="alopecia", keywords="QoL", keywords="burden", keywords="dermatology", abstract="Background: Alopecia areata (AA) is associated with negative impacts on the quality of life (QoL). Data on this impact are lacking for Canadian patients and their caregivers. Objective: This study aims to investigate the burden of AA on Canadian patients and their caregivers. Methods: We created 4 online surveys for patients 5-11 years old, 12-17 years old, and ?18 years old and for caregivers of children (<18 years old) with AA. These were disseminated through the Canadian Alopecia Areata Foundation (CANAAF) website and to dermatologists across Canada. Results: In total, 115 adult patients (n=100, 87\%, female), 14 pediatric patients (n=13, 92.9\%, female), and 15 caregivers completed the surveys online. The majority (n=123, 95\%) of patients felt uncomfortable or self-conscious about their appearance. Camouflaging hair loss with hats, scarves, and hairpieces was a common practice for 11 (78.6\%) pediatric and 84 (73\%) adult patients. Avoidance of social situations was reported by 8 (57.1\%) pediatric and 75 (65.2\%) adult patients. Constant worry about losing the achieved hair growth was a concern for 8 (57.1\%) pediatric and 75 (65.2\%) adult patients. On a scale of 1-5, the mean score of caregivers' own feelings of sadness or depression about their child's AA was 4.0 (SD 0.9) and of their feelings of guilt or helplessness was 4.2 (SD 1.2). The impact on the QoL was moderate for both children and adults. Based on the Adjustment Disorder New Module-20 (ADNM-20), 71 (61.7\%) of 115 patients were at high risk of an adjustment disorder. Abnormal anxiety scores were recorded in 40 (34.8\%) patients compared to abnormal depression scores in 20 (17.4\%) patients. Conclusions: This study confirmed a significant burden of AA on Canadian patients' and caregivers' QoL. ", doi="10.2196/39167", url="https://derma.jmir.org/2022/4/e39167", url="http://www.ncbi.nlm.nih.gov/pubmed/37632886" } @Article{info:doi/10.2196/41481, author="Jacob, Christine and Bourke, Steven and Heuss, Sabina", title="From Testers to Cocreators---the Value of and Approaches to Successful Patient Engagement in the Development of eHealth Solutions: Qualitative Expert Interview Study", journal="JMIR Hum Factors", year="2022", month="Oct", day="6", volume="9", number="4", pages="e41481", keywords="telemedicine", keywords="smartphone", keywords="mobile phone", keywords="electronic health record", keywords="public health practice", keywords="technology", keywords="perception", keywords="health education", keywords="mobile health", keywords="mHealth", keywords="telehealth", keywords="eHealth", keywords="patients", keywords="patient engagement", keywords="patient voice", keywords="patient empowerment", abstract="Background: Research has shown that patient engagement is most commonly done at the beginning of research or to test readily available prototypes and less commonly done in other phases such as the execution phases. Previous studies have reported that patients are usually assigned a consultative rather than a decision-making role in health service planning and evaluation. Objective: This study had 2 objectives: to better understand the challenges and opportunities in the inclusion of patients in the development of eHealth technologies and ideas on how to overcome the identified gaps and to create a research-based end-to-end practical blueprint that can guide the relevant stakeholders to successfully engage patients as cocreators in all human-centered design phases rather than mere testers of preplanned prototypes. Methods: Key informant interviews were conducted using in-depth semistructured interviews with 20 participants from 6 countries across Europe. This was followed by a focus group to validate the initial findings. Participants encompassed all the relevant stakeholder groups including patient experts, eHealth experts, health technology providers, clinicians, pharma executives, and health insurance experts. Results: This study shows that engaging patients in eHealth development can help provide different types of value; namely, identifying unmet needs, better usability and desirability, better fit into the patient journey, better adoption and stickiness, better health outcomes, advocacy and trust, a sense of purpose, and better health equity and access. However, the participants agreed that patients are usually engaged too late in the development process, mostly assuming a sounding role in testing a ready-made prototype. The justification for these gaps in engagement is driven by some prominent barriers, notably compliance risks, patient-related factors, power dynamics, patient engagement as lip service, poor value perception, lack of resources, mistrust, and inflexibility. On the positive side, the participants also reflected on facilitators for better patient engagement; for instance, engaging through engagement partners, novel approaches such as the rise of professional patient experts, embedding patients in development teams, expectation management, and professional moderation services. Conclusions: Overcoming the current gaps in patient engagement in eHealth development requires consolidated efforts from all stakeholders in a complex health care ecosystem. The shift toward more patient-driven eHealth development requires education and awareness; frameworks to monitor and evaluate the value of patient engagement; regulatory clarity and simplification; platforms to facilitate patient access and identification; patient incentivization, transparency, and trust; and a mindset shift toward value-based health care. ", doi="10.2196/41481", url="https://humanfactors.jmir.org/2022/4/e41481", url="http://www.ncbi.nlm.nih.gov/pubmed/36102548" } @Article{info:doi/10.2196/38461, author="Perry, M. Laura and Morken, Victoria and Peipert, D. John and Yanez, Betina and Garcia, F. Sofia and Barnard, Cynthia and Hirschhorn, R. Lisa and Linder, A. Jeffrey and Jordan, Neil and Ackermann, T. Ronald and Harris, Alexandra and Kircher, Sheetal and Mohindra, Nisha and Aggarwal, Vikram and Frazier, Rebecca and Coughlin, Ava and Bedjeti, Katy and Weitzel, Melissa and Nelson, C. Eugene and Elwyn, Glyn and Van Citters, D. Aricca and O'Connor, Mary and Cella, David", title="Patient-Reported Outcome Dashboards Within the Electronic Health Record to Support Shared Decision-making: Protocol for Co-design and Clinical Evaluation With Patients With Advanced Cancer and Chronic Kidney Disease", journal="JMIR Res Protoc", year="2022", month="Sep", day="21", volume="11", number="9", pages="e38461", keywords="patient-reported outcome measures", keywords="shared decision-making", keywords="medical informatics", keywords="coproduction", keywords="learning health system", keywords="cancer", keywords="chronic kidney disease", abstract="Background: Patient-reported outcomes---symptoms, treatment side effects, and health-related quality of life---are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients' symptom monitoring, shared decision-making, and effective use of the health care system. Objective: The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes. Methods: Co-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized. Results: The dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective. Conclusions: This protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems. International Registered Report Identifier (IRRID): DERR1-10.2196/38461 ", doi="10.2196/38461", url="https://www.researchprotocols.org/2022/9/e38461", url="http://www.ncbi.nlm.nih.gov/pubmed/36129747" } @Article{info:doi/10.2196/38926, author="Mesk{\'o}, Bertalan", title="COVID-19's Impact on Digital Health Adoption: The Growing Gap Between a Technological and a Cultural Transformation", journal="JMIR Hum Factors", year="2022", month="Sep", day="19", volume="9", number="3", pages="e38926", keywords="COVID-19", keywords="digital health", keywords="future", keywords="cultural transformation", keywords="medical information", keywords="technology adoption", keywords="health care", keywords="physician burnout", keywords="burnout", doi="10.2196/38926", url="https://humanfactors.jmir.org/2022/3/e38926", url="http://www.ncbi.nlm.nih.gov/pubmed/36121692" } @Article{info:doi/10.2196/35772, author="Cheng, Christina and Gearon, Emma and Hawkins, Melanie and McPhee, Crystal and Hanna, Lisa and Batterham, Roy and Osborne, H. Richard", title="Digital Health Literacy as a Predictor of Awareness, Engagement, and Use of a National Web-Based Personal Health Record: Population-Based Survey Study", journal="J Med Internet Res", year="2022", month="Sep", day="16", volume="24", number="9", pages="e35772", keywords="eHealth", keywords="mobile health", keywords="mHealth", keywords="health literacy", keywords="health equity", keywords="electronic health records", keywords="vulnerable populations", keywords="disadvantaged populations", abstract="Background: Web-based personal health records (PHRs) have the potential to improve the quality, accuracy, and timeliness of health care. However, the international uptake of web-based PHRs has been slow. Populations experiencing disadvantages are less likely to use web-based PHRs, potentially widening health inequities within and among countries. Objective: With limited understanding of the predictors of community uptake and use of web-based PHR, the aim of this study was to identify the predictors of awareness, engagement, and use of the Australian national web-based PHR, My Health Record (MyHR). Methods: A population-based survey of adult participants residing in regional Victoria, Australia, was conducted in 2018 using telephone interviews. Logistic regression, adjusted for age, was used to assess the relationship among digital health literacy, health literacy, and demographic characteristics, and the 3 dependent variables of MyHR: awareness, engagement, and use. Digital health literacy and health literacy were measured using multidimensional tools, using all 7 scales of the eHealth Literacy Questionnaire and 4 out of the 9 scales of the Health Literacy Questionnaire. Results: A total of 998 responses were analyzed. Many elements of digital health literacy were strongly associated with MyHR awareness, engagement, and use. A 1-unit increase in each of the 7 eHealth Literacy Questionnaire scales was associated with a 2- to 4-fold increase in the odds of using MyHR: using technology to process health information (odds ratio [OR] 4.14, 95\% CI 2.34-7.31), understanding of health concepts and language (OR 2.25, 95\% CI 1.08-4.69), ability to actively engage with digital services (OR 4.44, 95\% CI 2.55-7.75), feel safe and in control (OR 2.36, 95\% CI 1.43-3.88), motivated to engage with digital services (OR 4.24, 95\% CI 2.36-7.61), access to digital services that work (OR 2.49, 95\% CI 1.32-4.69), and digital services that suit individual needs (OR 3.48, 95\% CI 1.97-6.15). The Health Literacy Questionnaire scales of health care support, actively managing health, and social support were also associated with a 1- to 2-fold increase in the odds of using MyHR. Using the internet to search for health information was another strong predictor; however, older people and those with less education were less likely to use MyHR. Conclusions: This study revealed strong and consistent patterns of association between digital health literacy and the use of a web-based PHR. The results indicate potential actions for promoting PHR uptake, including improving digital technology and skill experiences that may improve digital health literacy and willingness to engage in web-based PHR. Uptake may also be improved through more responsive digital services, strengthened health care, and better social support. A holistic approach, including targeted solutions, is needed to ensure that web-based PHR can realize its full potential to help reduce health inequities. ", doi="10.2196/35772", url="https://www.jmir.org/2022/9/e35772", url="http://www.ncbi.nlm.nih.gov/pubmed/36112404" } @Article{info:doi/10.2196/37793, author="Raj, Minakshi and Ryan, Kerry and Nong, Paige and Calhoun, Karen and Trinidad, Grace M. and De Vries, Raymond and Creary, Melissa and Spector-Bagdady, Kayte and Kardia, R. Sharon L. and Platt, Jodyn", title="Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study", journal="JMIR Cancer", year="2022", month="Sep", day="16", volume="8", number="3", pages="e37793", keywords="public deliberation", keywords="data sharing", keywords="health information exchange", keywords="patient engagement", keywords="health information", keywords="sharing", keywords="cancer", keywords="oncology", keywords="precision oncology", keywords="information", keywords="policy", keywords="personalized medicine", keywords="public preference", abstract="Background: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. Objective: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. Methods: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. Results: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group's decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. Conclusions: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations. ", doi="10.2196/37793", url="https://cancer.jmir.org/2022/3/e37793", url="http://www.ncbi.nlm.nih.gov/pubmed/36112409" } @Article{info:doi/10.2196/39178, author="Mesk{\'o}, Bertalan and deBronkart, Dave", title="Patient Design: The Importance of Including Patients in Designing Health Care", journal="J Med Internet Res", year="2022", month="Aug", day="31", volume="24", number="8", pages="e39178", keywords="patient", keywords="patient design", keywords="user design", keywords="patient centric", keywords="patient focus", keywords="digital health", keywords="future", keywords="empowerment", keywords="involvement", keywords="participatory", keywords="engagement", keywords="participation", keywords="patient centred", keywords="patient centered", doi="10.2196/39178", url="https://www.jmir.org/2022/8/e39178", url="http://www.ncbi.nlm.nih.gov/pubmed/36044250" } @Article{info:doi/10.2196/38209, author="Kennedy, Blair Ann and Riyad, Youssef Cindy Nessim and Ellis, Ryan and Fleming, R. Perry and Gainey, Mallorie and Templeton, Kara and Nourse, Anna and Hardaway, Virginia and Brown, April and Evans, Pam and Natafgi, Nabil", title="Evaluating a Global Assessment Measure Created by Standardized Patients for the Multiple Mini Interview in Medical School Admissions: Mixed Methods Study", journal="J Particip Med", year="2022", month="Aug", day="30", volume="14", number="1", pages="e38209", keywords="co-design", keywords="participatory design", keywords="medical schools", keywords="exploratory sequential mixed methods design", keywords="school admission criteria", keywords="medical students", keywords="communication", keywords="multiple mini interviews", keywords="interview", keywords="patient", keywords="student", keywords="medical school", keywords="acceptance", keywords="study design", abstract="Background: Standardized patients (SPs) are essential stakeholders in the multiple mini interviews (MMIs) that are increasingly used to assess medical school applicants' interpersonal skills. However, there is little evidence for their inclusion in the development of instruments. Objective: This study aimed to describe the process and evaluate the impact of having SPs co-design and cocreate a global measurement question that assesses medical school applicants' readiness for medical school and acceptance status. Methods: This study used an exploratory, sequential, and mixed methods study design. First, we evaluated the initial MMI program and determined the next quality improvement steps. Second, we held a collaborative workshop with SPs to codevelop the assessment question and response options. Third, we evaluated the created question and the additional MMI rubric items through statistical tests based on 1084 applicants' data from 3 cohorts of applicants starting in the 2018-2019 academic year. The internal reliability of the MMI was measured using a Cronbach $\alpha$ test, and its prediction of admission status was tested using a forward stepwise binary logistic regression. Results: Program evaluation indicated the need for an additional quantitative question to assess applicant readiness for medical school. In total, 3 simulation specialists, 2 researchers, and 21 SPs participated in a workshop leading to a final global assessment question and responses. The Cronbach $\alpha$'s were >0.8 overall and in each cohort year. The final stepwise logistic model for all cohorts combined was statistically significant (P<.001), explained 9.2\% (R2) of the variance in acceptance status, and correctly classified 65.5\% (637/972) of cases. The final model consisted of 3 variables: empathy, rank of readiness, and opening the encounter. Conclusions: The collaborative nature of this project between stakeholders, including nonacademics and researchers, was vital for the success of this project. The SP-created question had a significant impact on the final model predicting acceptance to medical school. This finding indicates that SPs bring a critical perspective that can improve the process of evaluating medical school applicants. ", doi="10.2196/38209", url="https://jopm.jmir.org/2022/1/e38209", url="http://www.ncbi.nlm.nih.gov/pubmed/36040776" } @Article{info:doi/10.2196/37952, author="Wang, Tingting and Giunti, Guido and Melles, Marijke and Goossens, Richard", title="Digital Patient Experience: Umbrella Systematic Review", journal="J Med Internet Res", year="2022", month="Aug", day="4", volume="24", number="8", pages="e37952", keywords="digital health", keywords="eHealth", keywords="telemedicine", keywords="telehealth", keywords="mobile health", keywords="mHealth", keywords="patient experience", keywords="user experience", keywords="influencing factors", keywords="user-centered design", keywords="human-computer interaction", abstract="Background: The adoption and use of technology have significantly changed health care delivery. Patient experience has become a significant factor in the entire spectrum of patient-centered health care delivery. Digital health facilitates further improvement and empowerment of patient experiences. Therefore, the design of digital health is served by insights into the barriers to and facilitators of digital patient experience (PEx). Objective: This study aimed to systematically review the influencing factors and design considerations of PEx in digital health from the literature and generate design guidelines for further improvement of PEx in digital health. Methods: We performed an umbrella systematic review following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. We searched Scopus, PubMed, and Web of Science databases. Two rounds of small random sampling (20\%) were independently reviewed by 2 reviewers who evaluated the eligibility of the articles against the selection criteria. Two-round interrater reliability was assessed using the Fleiss-Cohen coefficient (k1=0.88 and k2=0.80). Thematic analysis was applied to analyze the extracted data based on a small set of a priori categories. Results: The search yielded 173 records, of which 45 (26\%) were selected for data analysis. Findings and conclusions showed a great diversity; most studies presented a set of themes (19/45, 42\%) or descriptive information only (16/45, 36\%). The digital PEx--related influencing factors were classified into 9 categories: patient capability, patient opportunity, patient motivation, intervention technology, intervention functionality, intervention interaction design, organizational environment, physical environment, and social environment. These can have three types of impacts: positive, negative, or double edged. We captured 4 design constructs (personalization, information, navigation, and visualization) and 3 design methods (human-centered or user-centered design, co-design or participatory design, and inclusive design) as design considerations. Conclusions: We propose the following definition for digital PEx: ``Digital patient experience is the sum of all interactions affected by a patient's behavioral determinants, framed by digital technologies, and shaped by organizational culture, that influence patient perceptions across the continuum of care channeling digital health.'' In this study, we constructed a design and evaluation framework that contains 4 phases---define design, define evaluation, design ideation, and design evaluation---and 9 design guidelines to help digital health designers and developers address digital PEx throughout the entire design process. Finally, our review suggests 6 directions for future digital PEx--related research. ", doi="10.2196/37952", url="https://www.jmir.org/2022/8/e37952", url="http://www.ncbi.nlm.nih.gov/pubmed/35925651" } @Article{info:doi/10.2196/35798, author="Powell, Adam and Dolan, Paul", title="Moving to Personalized Medicine Requires Personalized Health Plans", journal="J Particip Med", year="2022", month="Aug", day="4", volume="14", number="1", pages="e35798", keywords="quality-adjusted life years", keywords="health insurance", keywords="personalized outcomes", keywords="patient preferences", keywords="cost-effectiveness", keywords="managed care", doi="10.2196/35798", url="https://jopm.jmir.org/2022/1/e35798", url="http://www.ncbi.nlm.nih.gov/pubmed/35925669" } @Article{info:doi/10.2196/38424, author="van de Vijver, Steven and Hummel, Deirdre and van Dijk, Hester Annericht and Cox, Jan and van Dijk, Oscar and Van den Broek, Nicoline and Metting, Esther", title="Evaluation of a Digital Self-management Platform for Patients With Chronic Illness in Primary Care: Qualitative Study of Stakeholders' Perspectives", journal="JMIR Form Res", year="2022", month="Aug", day="3", volume="6", number="8", pages="e38424", keywords="primary care", keywords="chronic disease", keywords="telemonitoring", keywords="digital health", keywords="self-management", keywords="patient-centered care", keywords="chronic care", keywords="chronic care management", keywords="illness", keywords="healthcare", keywords="healthcare professional", keywords="user", keywords="patient", keywords="platform", keywords="tool", keywords="communication", keywords="empowerment", keywords="online", abstract="Background: Population aging and multimorbidity has led to increasing chronic care needs associated with new challenges in managing growing costs, rising health care professional workloads, and the adoption of rigorous guidelines. These issues could all benefit from greater digitalization and a more patient-centered approach to chronic care, a situation brought to the fore by the COVID-19 pandemic. Little is known about real-life use in primary care. Objective: This study aimed to explore the views, thoughts, usability, and experiences concerning a recently introduced digital self-care platform for chronic conditions in 3 Dutch primary care practices. Methods: We conducted an explorative study combining questionnaires and interviews among patients and general practitioners from 3 general practices that used the digital platform. Questionnaires were sent to patients in each practice to seek the views and experiences of both patient nonusers (n=20) and patient users (n=58) of the platform, together with standardized questionnaires about illness perception and quality of life. In addition, patients (n=15) and general practitioners (n=4) who used the platform took part in semistructured interviews. We transcribed interviews verbatim and performed qualitative content analysis using a deductive approach. The results of the questionnaires were analyzed with descriptive analysis. Results: Among patients who had not actively used the platform but had received an explanation, only 35\% (7/20) would recommend its use due to concerns over communication and handling. However, this percentage increased to 76.3\% (45/59) among the people who actively used the platform. Interviews with patients and general practitioners who used the platform uncovered several key benefits, including reduced time requirements, reduced workload, improved care quality, and improved accessibility due to the greater patient-centeredness and use of different communication tools. In addition, the self-management tool led to greater patient autonomy and empowerment. Although users considered the platform feasible, usable, and easy to use, some technical issues remained and some patients expressed concerns about the reduction in human contact and feedback. Conclusions: The overall experience and usability of the platform was good. Support for the online self-management platform for chronic care increased when patients actively used the tool and could experience or identify important advantages. However, patients still noted several areas for improvement that need to be tackled in future iterations. To ensure benefit in the wider population, we must also evaluate this platform in cohorts with lower digital and health literacy. ", doi="10.2196/38424", url="https://formative.jmir.org/2022/8/e38424", url="http://www.ncbi.nlm.nih.gov/pubmed/35921145" } @Article{info:doi/10.2196/35702, author="Liu, Yongtai and Yin, Zhijun and Wan, Zhiyu and Yan, Chao and Xia, Weiyi and Ni, Congning and Clayton, Wright Ellen and Vorobeychik, Yevgeniy and Kantarcioglu, Murat and Malin, A. Bradley", title="Implicit Incentives Among Reddit Users to Prioritize Attention Over Privacy and Reveal Their Faces When Discussing Direct-to-Consumer Genetic Test Results: Topic and Attention Analysis", journal="JMIR Infodemiology", year="2022", month="Aug", day="3", volume="2", number="2", pages="e35702", keywords="direct-to-consumer genetic testing", keywords="topic modeling", keywords="social media", abstract="Background: As direct-to-consumer genetic testing services have grown in popularity, the public has increasingly relied upon online forums to discuss and share their test results. Initially, users did so anonymously, but more recently, they have included face images when discussing their results. Various studies have shown that sharing images on social media tends to elicit more replies. However, users who do this forgo their privacy. When these images truthfully represent a user, they have the potential to disclose that user's identity. Objective: This study investigates the face image sharing behavior of direct-to-consumer genetic testing users in an online environment to determine if there exists an association between face image sharing and the attention received from other users. Methods: This study focused on r/23andme, a subreddit dedicated to discussing direct-to-consumer genetic testing results and their implications. We applied natural language processing to infer the themes associated with posts that included a face image. We applied a regression analysis to characterize the association between the attention that a post received, in terms of the number of comments, the karma score (defined as the number of upvotes minus the number of downvotes), and whether the post contained a face image. Results: We collected over 15,000 posts from the r/23andme subreddit, published between 2012 and 2020. Face image posting began in late 2019 and grew rapidly, with over 800 individuals revealing their faces by early 2020. The topics in posts including a face were primarily about sharing, discussing ancestry composition, or sharing family reunion photos with relatives discovered via direct-to-consumer genetic testing. On average, posts including a face image received 60\% (5/8) more comments and had karma scores 2.4 times higher than other posts. Conclusions: Direct-to-consumer genetic testing consumers in the r/23andme subreddit are increasingly posting face images and testing reports on social platforms. The association between face image posting and a greater level of attention suggests that people are forgoing their privacy in exchange for attention from others. To mitigate this risk, platform organizers and moderators could inform users about the risk of posting face images in a direct, explicit manner to make it clear that their privacy may be compromised if personal images are shared. ", doi="10.2196/35702", url="https://infodemiology.jmir.org/2022/2/e35702", url="http://www.ncbi.nlm.nih.gov/pubmed/37113452" } @Article{info:doi/10.2196/36323, author="Viola, S. Adrienne and Levonyan-Radloff, Kristine and Masterson, Margaret and Manne, L. Sharon and Hudson, V. Shawna and Devine, A. Katie", title="Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study", journal="JMIR Form Res", year="2022", month="Aug", day="3", volume="6", number="8", pages="e36323", keywords="self-management", keywords="peer mentoring", keywords="cancer survivorship", keywords="long-term follow-up care", abstract="Background: Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. Objective: This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. Methods: Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. Results: A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. Conclusions: Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer. ", doi="10.2196/36323", url="https://formative.jmir.org/2022/8/e36323", url="http://www.ncbi.nlm.nih.gov/pubmed/35921137" } @Article{info:doi/10.2196/38615, author="Deinboll, Anne and Moe, Fredriksen Cathrine and Ludvigsen, Spliid Mette", title="Interventions, Participative Role, Barriers, and Facilitators for Involvement in eHealth Communication for People Undergoing Hemodialysis: Protocol for a Scoping Review", journal="JMIR Res Protoc", year="2022", month="Jul", day="29", volume="11", number="7", pages="e38615", keywords="chronic disease", keywords="decision-making", keywords="shared", keywords="electronic health records", keywords="nephrology", keywords="patient advocacy", keywords="patient portals", keywords="referral and consultation", keywords="renal dialysis", keywords="renal insufficiency", keywords="chronic", keywords="patient participation", abstract="Background: eHealth interventions have been shown to offer people living with chronic kidney disease the opportunity of embracing dialysis therapies with greater confidence, the potential to obtain better clinical outcomes and increased quality of life, and diverse and flexible designs and delivery options. eHealth interventions or solutions can offer one-way information without the possibility for dialogue, as with most mobile apps. eHealth interventions intending to enable two-way communication between patients undergoing hemodialysis and health professionals are the focus of this review. eHealth communication interventions that enable two-way communication between patients undergoing hemodialysis and health professionals is an emerging field, but issues relating to participation in eHealth communication for patients undergoing hemodialysis are scarcely described. The current conceptualization of this issue is too scattered to inform the development of future interventions. In this scoping review, we want to assemble and examine this scattered knowledge on participation in two-way eHealth communication for patients undergoing hemodialysis. Objective: We want to understand the participative role of people living with chronic kidney disease undergoing hemodialysis in available communicative eHealth interventions and to understand which barriers and facilitators exist for patient involvement in eHealth communication with health professionals. Methods: A scoping review methodology is guiding this study. Peer-reviewed primary studies, including quantitative, qualitative, and mixed methods study designs will be included. A systematic search for published studies, dissertations, and theses at the doctoral level in the English language will be conducted in five databases (MEDLINE, Embase, CINAHL, Scopus, and ProQuest Dissertations and Theses). The included literature will focus on adult (18 years or older) patients undergoing hemodialysis who are involved in eHealth communication with health professionals. Data on the type of eHealth communication interventions, the participative role, and barriers and facilitators for the involvement in eHealth communication for people undergoing hemodialysis will be extracted independently by two reviewers. The extracted data will be collected in a draft charting table prepared for the study. Any discrepancies between the reviewers will be solved through discussion or with a third reviewer. Results: Results are anticipated by the spring of 2023 and will be presented in tabular format along with a narrative summary. The anticipated results will be presented in alignment with the objectives of the study, presenting findings on the participative role of patients undergoing hemodialysis in eHealth communication interventions. Conclusions: We anticipate that this study will inform on eHealth communication interventions and the level of patient participation in eHealth communication for patients undergoing hemodialysis. The systematized overview will possibly identify research gaps and motivate further development of eHealth communication to ensure patient participation. The findings will be of interest to key stakeholders in clinical care, research, development, policy, and patient advocacy. International Registered Report Identifier (IRRID): PRR1-10.2196/38615 ", doi="10.2196/38615", url="https://www.researchprotocols.org/2022/7/e38615", url="http://www.ncbi.nlm.nih.gov/pubmed/35904862" } @Article{info:doi/10.2196/35830, author="Xuan, Yan and Guo, Chaojin and Lu, Wei", title="The Effects of Information Continuity and Interpersonal Continuity on Physician Services Online: Cross-sectional Study", journal="JMIR Med Inform", year="2022", month="Jul", day="21", volume="10", number="7", pages="e35830", keywords="continuity of care", keywords="web-based medical service", keywords="service quality", keywords="information continuity", keywords="interpersonal continuity", abstract="Background: Web-based medical services have become an effective supplement to traditional services in hospitals and an essential part of medical services. Studies have shown that web-based medical services are useful for shortening the delayed admission time and for enhancing the treatment effect from the service continuity perspective. However, the specific measures that patients and physicians should take to improve service continuity remain unknown. Objective: Based on the information richness theory and continuity of care, this study investigates the dynamic effects of information continuity and interpersonal continuity on physician services online. Methods: Data of 7200 patients with 360 physicians covering complete interaction records were collected from a professional web-based platform in China. Content analysis was performed to recognize matching patients and physicians, and least square regression analysis was performed to obtain all empirical results. Results: Empirical results showed that in the short term, information continuity (including offline experience, medical records, and detailed information) influences physicians' web-based services, and their influences show heterogeneity. Moreover, if a patient's online physician is the same physician who he/she has visited offline, we find that interpersonal continuity is important for service. In the long term, information continuity and interpersonal continuity positively improve service continuity by facilitating repeat purchases. Conclusions: Overall, our findings not only shed new light on patient behavior online and cross-channel behavior but also provide practical insights into improving the continuity of care in online health communities. ", doi="10.2196/35830", url="https://medinform.jmir.org/2022/7/e35830", url="http://www.ncbi.nlm.nih.gov/pubmed/35862183" } @Article{info:doi/10.2196/39145, author="Pawelek, Jeff and Baca-Motes, Katie and Pandit, A. Jay and Berk, B. Benjamin and Ramos, Edward", title="The Power of Patient Engagement With Electronic Health Records as Research Participants", journal="JMIR Med Inform", year="2022", month="Jul", day="8", volume="10", number="7", pages="e39145", keywords="electronic health record", keywords="EHR", keywords="digital health technology", keywords="digital clinical trial", keywords="underrepresentation", keywords="underrepresented in biomedical research", keywords="biomedical research", doi="10.2196/39145", url="https://medinform.jmir.org/2022/7/e39145", url="http://www.ncbi.nlm.nih.gov/pubmed/35802410" } @Article{info:doi/10.2196/37725, author="Depla, Louise Anne and Lamain-de Ruiter, Marije and Laureij, T. Lyzette and Ernst-Smelt, E. Hiske and Hazelzet, A. Jan and Franx, Arie and Bekker, N. Mireille and ", title="Patient-Reported Outcome and Experience Measures in Perinatal Care to Guide Clinical Practice: Prospective Observational Study", journal="J Med Internet Res", year="2022", month="Jul", day="5", volume="24", number="7", pages="e37725", keywords="perinatal care", keywords="patient-reported outcomes", keywords="patient-reported experiences", keywords="patient-centered outcome measures", keywords="value-based health care", keywords="shared decision-making", keywords="personalized care", keywords="integrated care", abstract="Background: The International Consortium for Health Outcomes Measurement has published a set of patient-centered outcome measures for pregnancy and childbirth (PCB set), including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). To establish value-based pregnancy and childbirth care, the PCB set was implemented in the Netherlands, using the outcomes on the patient level for shared decision-making and on an aggregated level for quality improvement. Objective: This study aims to report first outcomes, experiences, and practice insights of implementing the PCB set in clinical practice. Methods: In total, 7 obstetric care networks across the Netherlands, each consisting of 1 or 2 hospitals and multiple community midwifery practices (ranging in number from 2 to 18), implemented the PROM and PREM domains of the PCB set as part of clinical routine. This observational study included all women participating in the clinical project. PROMs and PREMs were assessed with questionnaires at 5 time points: 2 during pregnancy and 3 post partum. Clinical threshold values (alerts) supported care professionals interpreting the answers, indicating possibly alarming outcomes per domain. Data collection took place from February 2020 to September 2021. Data analysis included missing (pattern) analysis, sum scores, alert rates, and sensitivity analysis. Results: In total, 1923 questionnaires were collected across the 5 time points: 816 (42.43\%) at T1 (first trimester), 793 (41.23\%) at T2 (early third trimester), 125 (6.5\%) at T3 (maternity week), 170 (8.84\%) at T4 (6 weeks post partum), and 19 (1\%) at T5 (6 months post partum). Of these, 84\% (1615/1923) were filled out completely. Missing items per domain ranged from 0\% to 13\%, with the highest missing rates for depression, pain with intercourse, and experience with pain relief at birth. No notable missing patterns were found. For the PROM domains, relatively high alert rates were found both in pregnancy and post partum for incontinence (469/1798, 26.08\%), pain with intercourse (229/1005, 22.79\%), breastfeeding self-efficacy (175/765, 22.88\%), and mother-child bonding (122/288, 42.36\%). Regarding the PREM domains, the highest alert rates were found for birth experience (37/170, 21.76\%), shared decision-making (101/982, 10.29\%), and discussing pain relief ante partum (310/793, 39.09\%). Some domains showed very little clinical variation; for example, role of the mother and satisfaction with care. Conclusions: The PCB set is a useful tool to assess patient-reported outcomes and experiences that need to be addressed over the whole course of pregnancy and childbirth. Our results provide opportunities to improve and personalize perinatal care. Furthermore, we could propose several recommendations regarding methods and timeline of measurements based on our findings. This study supports the implementation of the PCB set in clinical practice, thereby advancing the transformation toward patient-centered, value-based health care for pregnancy and childbirth. ", doi="10.2196/37725", url="https://www.jmir.org/2022/7/e37725", url="http://www.ncbi.nlm.nih.gov/pubmed/35787519" } @Article{info:doi/10.2196/36878, author="Wozney, Lori and Curran, Janet and Archambault, Patrick and Cassidy, Christine and Jabbour, Mona and Mackay, Rebecca and Newton, Amanda and Plint, C. Amy and Somerville, Mari", title="Electronic Discharge Communication Tools Used in Pediatric Emergency Departments: Systematic Review", journal="JMIR Pediatr Parent", year="2022", month="Jun", day="24", volume="5", number="2", pages="e36878", keywords="emergency department", keywords="medical informatics", keywords="pediatric", keywords="systematic review", keywords="patient discharge summaries", keywords="patient-centered care", keywords="technology", keywords="hospital", abstract="Background: Electronic discharge communication tools (EDCTs) are increasingly common in pediatric emergency departments (EDs). These tools have been shown to improve patient-centered communication, support postdischarge care at home, and reduce unnecessary return visits to the ED. Objective: This study aimed to map and assess the evidence base for EDCTs used in pediatric EDs according to their functionalities, intended purpose, implementation context features, and outcomes. Methods: A systematic review was conducted following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) procedures for identification, screening, and eligibility. A total of 7 databases (EBSCO, MEDLINE, CINAHL, PsycINFO, EMBASE Scopus, and Web of Science) were searched for studies published between 1989 and 2021. Studies evaluating discharge communication--related outcomes using electronic tools (eg, text messages, videos, and kiosks) in pediatric EDs were included. In all, 2 researchers independently assessed the eligibility. Extracted data related to study identification, methodology, settings and demographics, intervention features, outcome implementation features, and practice, policy, and research implications. The Mixed Method Appraisal Tool was used to assess methodological quality. The synthesis of results involved structured tabulation, vote counting, recoding into common metrics, inductive thematic analysis, descriptive statistics, and heat mapping. Results: In total, 231 full-text articles and abstracts were screened for review inclusion with 49 reports (representing 55 unique tools) included. In all, 70\% (26/37) of the studies met at least three of five Mixed Method Appraisal Tool criteria. The most common EDCTs were videos, text messages, kiosks, and phone calls. The time required to use the tools ranged from 120 seconds to 80 minutes. The EDCTs were evaluated for numerous presenting conditions (eg, asthma, fracture, head injury, fever, and otitis media) that required a range of at-home care needs after the ED visit. The most frequently measured outcomes were knowledge acquisition, caregiver and patient beliefs and attitudes, and health service use. Unvalidated self-report measures were typically used for measurement. Health care provider satisfaction or system-level impacts were infrequently measured in studies. The directionality of primary outcomes pointed to positive effects for the primary measure (44/55, 80\%) or no significant difference (10/55, 18\%). Only one study reported negative findings, with an increase in return visits to the ED after receiving the intervention compared with the control group. Conclusions: This review is the first to map the broad literature of EDCTs used in pediatric EDs. The findings suggest a promising evidence base, demonstrating that EDCTs have been successfully integrated across clinical contexts and deployed via diverse technological modalities. Although caregiver and patient satisfaction with EDCTs is high, future research should use robust trials using consistent measures of communication quality, clinician experience, cost-effectiveness, and health service use to accumulate evidence regarding these outcomes. Trial Registration: PROSPERO CRD42020157500; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=157500 ", doi="10.2196/36878", url="https://pediatrics.jmir.org/2022/2/e36878", url="http://www.ncbi.nlm.nih.gov/pubmed/35608929" } @Article{info:doi/10.2196/31148, author="Drtilova, Hana and Machackova, Hana and Smahelova, Martina", title="Evaluation of Web-Based Health Information From the Perspective of Women With Eating Disorders: Thematic Analysis", journal="J Med Internet Res", year="2022", month="Jun", day="13", volume="24", number="6", pages="e31148", keywords="eating disorders", keywords="web-based health information", keywords="Czech women", abstract="Background: Users with experience of eating disorders use the internet as a source of information, whether for prorecovery activities (such as web-based treatment, looking for information, support, and sharing) or activities that promote eating disorder behavior as a desirable lifestyle choice (such as pro--eating disorder communities and reading and creating pro--eating disorder posts). Their assessment of web-based eating disorder--related information is crucial for understanding the context of the illness and for health professionals and their web-based interventions. Objective: This study aimed to understand the criteria young women with the experience of eating disorders use in evaluating eating disorder--related web-based information and what eating disorder--related characteristics of these women are involved in their evaluation. Methods: We analyzed 30 semistructured individual interviews with Czech women aged 16 to 28 years with past or present eating disorder experience using a qualitative approach. Thematic analysis was adopted as an analytical tool. Results: The specifics of eating disorder phases (the disorder stage and the treatment process) emerged as important aspects in the process of information assessment. Other specific characteristics of respondents (eg, motivation, abilities, and resources) addressed how the respondents arrived at certain web-based information and how they evaluated it. In addition, the respondents described some content cues as features of information (eg, novelty and social information pooling). Another finding is that other users' attitudes, experiences, activities, and personal features are involved in the information evaluation of these users and the information presented by them. Finally, the respondents evaluated the websites' visual look and graphic components. Conclusions: This study shows that web-based information evaluation reported by women with experience of eating disorders is a complex process. The assessment is influenced by current personal characteristics related to the illness (mainly the motivation for maintaining or curing the eating disorder) using cues associated with information content, other users, and website look. The study findings have important implications for health professionals, who should ask their clients questions about web-based communities and their needs to understand what information and sources they choose. ", doi="10.2196/31148", url="https://www.jmir.org/2022/6/e31148", url="http://www.ncbi.nlm.nih.gov/pubmed/35699984" } @Article{info:doi/10.2196/37438, author="Kujala, Sari and H{\"o}rhammer, Iiris and V{\"a}yrynen, Akseli and Holmroos, Mari and N{\"a}ttiaho-R{\"o}nnholm, Mirva and H{\"a}gglund, Maria and Johansen, Alise Monika", title="Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey", journal="J Med Internet Res", year="2022", month="Jun", day="6", volume="24", number="6", pages="e37438", keywords="patient portals", keywords="EHR", keywords="electronic health record", keywords="open notes", keywords="patient access", keywords="self-management", keywords="national survey", abstract="Background: Patient portals that provide access to electronic health records offer a means for patients to better understand and self-manage their health. Yet, patient access to electronic health records raises many concerns among physicians, and little is known about the use practices and experiences of patients who access their electronic health records via a mature patient portal that has been available for citizens for over five years. Objective: We aimed to identify patients' experiences using a national patient portal to access their electronic health records. In particular, we focused on understanding usability-related perceptions and the benefits and challenges of reading clinical notes written by health care professionals. Methods: Data were collected from 3135 patient users of the Finnish My Kanta patient portal through a web-based survey in June 2021 (response rate: 0.7\%). Patients received an invitation to complete the questionnaire when they logged out of the patient portal. Respondents were asked to rate the usability of the patient portal, and the ratings were used to calculate approximations of the System Usability Scale score. Patients were also asked about the usefulness of features, and whether they had discussed the notes with health professionals. Open-ended questions were used to ask patients about their experiences of the benefits and challenges related to reading health professionals' notes. Results: Overall, patient evaluations of My Kanta were positive, and its usability was rated as good (System Usability Scale score approximation: mean 72.7, SD 15.9). Patients found the portal to be the most useful for managing prescriptions and viewing the results of examinations and medical notes. Viewing notes was the most frequent reason (978/3135, 31.2\%) for visiting the portal. Benefits of reading the notes mentioned by patients included remembering and understanding what was said by health professionals and the instructions given during an appointment, the convenience of receiving information about health and care, the capability to check the accuracy of notes, and using the information to support self-management. However, there were challenges related to difficulty in understanding medical terminology, incorrect or inadequate notes, missing notes, and usability. Conclusions: Patients actively used medical notes to receive information to follow professionals' instructions to take care of their health, and patient access to electronic health records can support self-management. However, for the benefits to be realized, improvements in the quality and availability of medical professionals' notes are necessary. Providing a standard information structure could help patients find the information they need. Furthermore, linking notes to vocabularies and other information sources could also improve the understandability of medical terminology; patient agency could be supported by allowing them to add comments to their notes, and patient trust of the system could be improved by allowing them to control the visibility of the professionals' notes. ", doi="10.2196/37438", url="https://www.jmir.org/2022/6/e37438", url="http://www.ncbi.nlm.nih.gov/pubmed/35666563" } @Article{info:doi/10.2196/35478, author="Kj{\"o}rk, K. Emma and Sunnerhagen, S. Katharina and Lundgren-Nilsson, {\AA}sa and Andersson, K. Anders and Carlsson, Gunnel", title="Development of a Digital Tool for People With a Long-Term Condition Using Stroke as a Case Example: Participatory Design Approach", journal="JMIR Hum Factors", year="2022", month="Jun", day="3", volume="9", number="2", pages="e35478", keywords="eHealth", keywords="digital tool", keywords="Strokeh{\"a}lsa", keywords="follow-up", keywords="chronic care", keywords="stroke", keywords="Post-Stroke Checklist", keywords="health literacy", keywords="co-design", keywords="shared decision making", abstract="Background: In patient care, demand is growing for digital health tools to enable remote services and enhance patient involvement. People with chronic conditions often have multiple health problems, and long-term follow-up is recommended to meet their needs and enable access to appropriate support. A digital tool for previsit preparation could enhance time efficiency and guide the conversation during the visit toward the patient's priorities. Objective: This study aims to develop a digital previsit tool and explore potential end user's perceptions, using a participatory approach with stroke as a case example. Methods: The digital tool was developed and prototyped according to service design principles, informed by qualitative participant data and feedback from an expert panel. All features were processed in workshops with a team that included a patient partner. The resulting tool presented questions about health problems and health information. Study participants were people with stroke recruited from an outpatient clinic and patient organizations in Sweden. Development and data collection were conducted in parallel. For conceptualization, the initial prototype was based on the Post-Stroke Checklist and research. Needs and relevance were explored in focus groups, and we used a web survey and individual interviews to explore perceived utility, ease of use, and acceptance. Data were thematically analyzed following the Framework Method. Results: The development process included 22 participants (9 women) with a median age of 59 (range 42-83) years and a median of 51 (range 4-228) months since stroke. Participants were satisfied or very satisfied with using the tool and recommended its use in clinical practice. Three main themes were constructed based on focus group data (n=12) and interviews (n=10). First, valuable accessible information illuminated the need for information to confirm experiences, facilitate responses, and invite engagement in their care. Amendments to the information in turn reconfigured their expectations. Second, utility and complexity in answering confirmed that the questions were relevant and comprehensible. Some participants perceived the answer options as limiting and suggested additional space for free text. Third, capturing needs and value of the tool highlighted the tool's potential to identify health problems and the importance of encouraging further dialog. The resulting digital tool, Strokeh{\"a}lsa [Strokehealth] version 1.0, is now incorporated into a national health platform. Conclusions: The participatory approach to tool development yielded a previsit digital tool that the study group perceived as useful. The holistic development process used here, which integrated health information, validated questions, and digital functionality, offers an example that could be applicable in the context of other long-term conditions. Beyond its potential to identify care needs, the tool offers information that confirms experiences and supports answering the questions in the tool. The tool is freely shared for adaptation in different contexts. Trial Registration: researchweb 236341; https://www.researchweb.org/is/vgr/project/236341 ", doi="10.2196/35478", url="https://humanfactors.jmir.org/2022/2/e35478", url="http://www.ncbi.nlm.nih.gov/pubmed/35657650" } @Article{info:doi/10.2196/34476, author="Cederved, Catarina and Back, Jon and {\AA}ngstr{\"o}m-Br{\"a}nnstr{\"o}m, Charlotte and Ljungman, Gustaf and Engvall, Gunn", title="Co-creation of a Serious Game About Radiotherapy: Participatory Action Research Study With Children Treated for Cancer", journal="JMIR Hum Factors", year="2022", month="May", day="31", volume="9", number="2", pages="e34476", keywords="children", keywords="participatory action research", keywords="game design", keywords="radiotherapy", keywords="education", keywords="supportive care", keywords="oncology", abstract="Background: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user. Objective: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy. Methods: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children's participation changed the game. Results: Two main themes were identified. The first theme was ``The children's participation was affected by their health and treatment'' and included the following subthemes: ``an opportunity to share emotions and perceptions of radiotherapy'' and ``the possibility to participate was affected by the severity of the disease.'' The second theme was ``participation allowed becoming an active part of game development'' and included the following subthemes: ``the opportunity to express sentiments about the game,'' ``the emergence of a playable game through the children's contributions,'' and ``the necessity of understanding the text.'' Conclusions: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children's illness affected their possibility to take part; thus, it is crucial to accommodate the children's needs when conducting similar studies. The parents' participation facilitated the meetings for their children, even though their involvement in the game design was negligible. ", doi="10.2196/34476", url="https://humanfactors.jmir.org/2022/2/e34476/", url="http://www.ncbi.nlm.nih.gov/pubmed/35639467" } @Article{info:doi/10.2196/29706, author="Korngiebel, M. Diane and West, McGlone Kathleen", title="Patient Recommendations for the Content and Design of Electronic Returns of Genetic Test Results: Interview Study Among Patients Who Accessed Their Genetic Test Results via the Internet", journal="JMIRx Med", year="2022", month="May", day="31", volume="3", number="2", pages="e29706", keywords="user-centered design", keywords="genomic medicine", keywords="patient portals", keywords="electronic health records", keywords="return of results", keywords="bioethics", keywords="genetics", keywords="genetic testing", keywords="patient preferences", keywords="design", keywords="human factors", keywords="mobile phone", abstract="Background: Genetic test results will be increasingly made available electronically as more patient-facing tools are developed; however, little research has been done that collects data on patient preferences for content and design before creating results templates. Objective: This study identifies patient preferences for the electronic return of genetic test results, including what considerations should be prioritized for content and design. Methods: Following user-centered design methods, 59 interviews were conducted by using semistructured protocols. The interviews explored the content and design issues of patient portals that facilitated the return of test results to patients. We interviewed patients who received electronic results for specific types of genetics tests (pharmacogenetic tests, hereditary blood disorder tests, and tests for the risk of heritable cancers) or electronically received any type of genetic or nongenetic test results. Results: In general, many of participants felt that there always needed to be some clinician involvement in electronic result returns and that electronic coversheets with simple summaries would be helpful for facilitating this. Coversheet summaries could accompany, but not replace, the more detailed report. Participants had specific suggestions for such results summaries, such as only reporting the information that was the most important for patients to understand, including next steps, and doing so by using clear language that is free of medical jargon. Electronic result returns should also include explicit encouragement for patients to contact health care providers about questions. Finally, many participants preferred to manage their care by using their smartphones, particularly in instances when they needed to access health information on the go. Conclusions: Participants recommended that a patient-friendly front section should accompany the more detailed report and made suggestions for organization, content, and wording. Many used their smartphones regularly to access test results; therefore, health systems and patient portal software vendors should accommodate smartphone app design and web portal design concomitantly when developing platforms for returning results. ", doi="10.2196/29706", url="https://med.jmirx.org/2022/2/e29706/", url="http://www.ncbi.nlm.nih.gov/pubmed/37725563" } @Article{info:doi/10.2196/37759, author="Smith, Arnott Catherine and Kelly, M. Michelle", title="In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders", journal="J Particip Med", year="2022", month="May", day="30", volume="14", number="1", pages="e37759", keywords="medical informatics", keywords="information sharing", keywords="electronic health records", keywords="patient portals", keywords="hospitals", keywords="pediatrics", keywords="focus group", keywords="inpatient care", keywords="caregivers", abstract="Background: Patient portals are a health information technology that allows patients and their proxies, such as caregivers and family members, to access designated portions of their electronic health record using mobile devices and web browsers. The Open Notes initiative in the United States, which became federal law in April 2021, has redrawn and expanded the boundaries of medical records. Only a few studies have focused on sharing notes with parents or caregivers of pediatric patients. Objective: This study aimed to investigate the anticipated impact of increasing the flow of electronic health record information, specifically physicians' daily inpatient progress notes, via a patient portal to parents during their child's acute hospital stay---an understudied population and an understudied setting. Methods: A total of 5 in-person focus groups were conducted with 34 stakeholders most likely impacted by sharing of physicians' inpatient notes with parents of hospitalized children: hospital administrators, hospitalist physicians, interns and resident physicians, nurses, and the parents themselves. Results: Distinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all the 5 focus groups. These themes were communication, recapitulation and reinforcement, education, stress reduction, quality control, and improving family-provider relationships. Challenges identified included burden on provider, medical jargon, communication, sensitive content, and decreasing trust. Conclusions: Providing patients and, in the case of pediatrics, caregivers with access to medical records via patient portals increases the flow of information and, in turn, their ability to participate in the discourse of their care. Parents in this study demonstrated not only that they act as monitors and guardians of their children's health but also that they are observers of the clinical processes taking place in the hospital and at their child's bedside. This includes the clinical documentation process, from the creation of notes to the reading and sharing of the notes. Parents acknowledge not only the importance of notes in the clinicians' workflow but also their collaboration with providers as part of the health care team. ", doi="10.2196/37759", url="https://jopm.jmir.org/2022/1/e37759", url="http://www.ncbi.nlm.nih.gov/pubmed/35635743" } @Article{info:doi/10.2196/35557, author="Cao, Bolin and Huang, Wensen and Chao, Naipeng and Yang, Guang and Luo, Ningzheng", title="Patient Activeness During Online Medical Consultation in China: Multilevel Analysis", journal="J Med Internet Res", year="2022", month="May", day="27", volume="24", number="5", pages="e35557", keywords="patient", keywords="physician", keywords="online medical consultation", keywords="patient activeness", abstract="Background: Online medical consultation is an important complementary approach to offline health care services. It not only increases patients' accessibility to medical care, but also encourages patients to actively participate in consultation, which can result in higher shared decision making, patient satisfaction, and treatment adherence. Objective: This study aims to explore multilevel factors that influence patient activeness in online medical consultations. Methods: A data set comprising 40,505 patients from 300 physicians in 10 specialties was included for multilevel analysis. Patient activeness score (PAS) was calculated based on the frequency and the proportion of patient discourses to the total frequency of doctor-patient interactions. Intraclass correlation coefficients were calculated to identify between-group variations, and the final multilevel regression model included patient- and physician-level factors. Results: Patients were not equally active in online medical consultations, with PASs varying from 0 to 125.73. Patient characteristics, consultation behavioral attributes, and physician professional characteristics constitute 3 dimensions that are associated with patient activeness. Specifically, young and female patients participated more actively. Patients' waiting times online ($\beta$=--.17; P<.001) for physician responses were negatively correlated with activeness, whereas patients' initiation of conversation ($\beta$=.83; P<.001) and patient consultation cost ($\beta$=.52; P<.001) in online medical consultation were positively correlated. Physicians' online consultation volumes ($\beta$=--.10; P=.01) were negatively associated with patient activeness, whereas physician online consultation fee ($\beta$=.03; P=.01) was positively associated. The interaction effects between patient- and physician-level factors were also identified. Conclusions: Patient activeness in online medical consultation requires more scholarly attention. Patient activeness is likely to be enhanced by reducing patients' waiting times and encouraging patients' initiation of conversation in online medical consultation. The findings have practical implications for patient-centered care and the improvement of online medical consultation services. ", doi="10.2196/35557", url="https://www.jmir.org/2022/5/e35557", url="http://www.ncbi.nlm.nih.gov/pubmed/35622403" } @Article{info:doi/10.2196/35696, author="Husted, Skov Karina Louise and Brink-Kj{\ae}r, Andreas and Fogelstr{\o}m, Mathilde and Hulst, Pernille and Bleibach, Akita and Henneberg, Kaj-{\AA}ge and S{\o}rensen, Dissing Helge Bjarup and Dela, Flemming and Jacobsen, Brings Jens Christian and Helge, Wulff J{\o}rn", title="A Model for Estimating Biological Age From Physiological Biomarkers of Healthy Aging: Cross-sectional Study", journal="JMIR Aging", year="2022", month="May", day="10", volume="5", number="2", pages="e35696", keywords="biological age", keywords="model development", keywords="principal component analysis", keywords="healthy aging", keywords="biomarkers", keywords="aging", abstract="Background: Individual differences in the rate of aging and susceptibility to disease are not accounted for by chronological age alone. These individual differences are better explained by biological age, which may be estimated by biomarker prediction models. In the light of the aging demographics of the global population and the increase in lifestyle-related morbidities, it is interesting to invent a new biological age model to be used for health promotion. Objective: This study aims to develop a model that estimates biological age based on physiological biomarkers of healthy aging. Methods: Carefully selected physiological variables from a healthy study population of 100 women and men were used as biomarkers to establish an estimate of biological age. Principal component analysis was applied to the biomarkers and the first principal component was used to define the algorithm estimating biological age. Results: The first principal component accounted for 31\% in women and 25\% in men of the total variance in the biological age model combining mean arterial pressure, glycated hemoglobin, waist circumference, forced expiratory volume in 1 second, maximal oxygen consumption, adiponectin, high-density lipoprotein, total cholesterol, and soluble urokinase-type plasminogen activator receptor. The correlation between the corrected biological age and chronological age was r=0.86 (P<.001) and r=0.81 (P<.001) for women and men, respectively, and the agreement was high and unbiased. No difference was found between mean chronological age and mean biological age, and the slope of the regression line was near 1 for both sexes. Conclusions: Estimating biological age from these 9 biomarkers of aging can be used to assess general health compared with the healthy aging trajectory. This may be useful to evaluate health interventions and as an aid to enhance awareness of individual health risks and behavior when deviating from this trajectory. Trial Registration: ClinicalTrials.gov NCT03680768; https://clinicaltrials.gov/ct2/show/NCT03680768 International Registered Report Identifier (IRRID): RR2-10.2196/19209 ", doi="10.2196/35696", url="https://aging.jmir.org/2022/2/e35696", url="http://www.ncbi.nlm.nih.gov/pubmed/35536617" } @Article{info:doi/10.2196/35187, author="Huang, Ming and Khurana, Aditya and Mastorakos, George and Wen, Andrew and He, Huan and Wang, Liwei and Liu, Sijia and Wang, Yanshan and Zong, Nansu and Prigge, Julie and Costello, Brian and Shah, Nilay and Ting, Henry and Fan, Jungwei and Patten, Christi and Liu, Hongfang", title="Patient Portal Messaging for Asynchronous Virtual Care During the COVID-19 Pandemic: Retrospective Analysis", journal="JMIR Hum Factors", year="2022", month="May", day="5", volume="9", number="2", pages="e35187", keywords="patient portal", keywords="patient portal message", keywords="asynchronous communication", keywords="COVID-19", keywords="utilization", keywords="digital health", keywords="healthcare", keywords="health care", keywords="remote healthcare", keywords="virtual care", keywords="pandemic", abstract="Background: During the COVID-19 pandemic, patient portals and their message platforms allowed remote access to health care. Utilization patterns in patient messaging during the COVID-19 crisis have not been studied thoroughly. In this work, we propose characterizing patients and their use of asynchronous virtual care for COVID-19 via a retrospective analysis of patient portal messages. Objective: This study aimed to perform a retrospective analysis of portal messages to probe asynchronous patient responses to the COVID-19 crisis. Methods: We collected over 2 million patient-generated messages (PGMs) at Mayo Clinic during February 1 to August 31, 2020. We analyzed descriptive statistics on PGMs related to COVID-19 and incorporated patients' sociodemographic factors into the analysis. We analyzed the PGMs on COVID-19 in terms of COVID-19--related care (eg, COVID-19 symptom self-assessment and COVID-19 tests and results) and other health issues (eg, appointment cancellation, anxiety, and depression). Results: The majority of PGMs on COVID-19 pertained to COVID-19 symptom self-assessment (42.50\%) and COVID-19 tests and results (30.84\%). The PGMs related to COVID-19 symptom self-assessment and COVID-19 test results had dynamic patterns and peaks similar to the newly confirmed cases in the United States and in Minnesota. The trend of PGMs related to COVID-19 care plans paralleled trends in newly hospitalized cases and deaths. After an initial peak in March, the PGMs on issues such as appointment cancellations and anxiety regarding COVID-19 displayed a declining trend. The majority of message senders were 30-64 years old, married, female, White, or urban residents. This majority was an even higher proportion among patients who sent portal messages on COVID-19. Conclusions: During the COVID-19 pandemic, patients increased portal messaging utilization to address health care issues about COVID-19 (in particular, symptom self-assessment and tests and results). Trends in message usage closely followed national trends in new cases and hospitalizations. There is a wide disparity for minority and rural populations in the use of PGMs for addressing the COVID-19 crisis. ", doi="10.2196/35187", url="https://humanfactors.jmir.org/2022/2/e35187", url="http://www.ncbi.nlm.nih.gov/pubmed/35171108" } @Article{info:doi/10.2196/34628, author="Wolff, L. Jennifer and Dukhanin, Vadim and Burgdorf, G. Julia and DesRoches, M. Catherine", title="Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity", journal="JMIR Aging", year="2022", month="May", day="4", volume="5", number="2", pages="e34628", keywords="patient portal", keywords="electronic health record", keywords="care partners", keywords="proxy", keywords="health equity", keywords="health informatics", keywords="health services", keywords="elderly", keywords="older adults", keywords="aging", keywords="cognition", keywords="health system", keywords="care delivery", keywords="elderly care", doi="10.2196/34628", url="https://aging.jmir.org/2022/2/e34628", url="http://www.ncbi.nlm.nih.gov/pubmed/35507405" } @Article{info:doi/10.2196/29118, author="Gisladottir, Undina and Nakikj, Drashko and Jhunjhunwala, Rashi and Panton, Jasmine and Brat, Gabriel and Gehlenborg, Nils", title="Effective Communication of Personalized Risks and Patient Preferences During Surgical Informed Consent Using Data Visualization: Qualitative Semistructured Interview Study With Patients After Surgery", journal="JMIR Hum Factors", year="2022", month="Apr", day="29", volume="9", number="2", pages="e29118", keywords="data visualization", keywords="surgical informed consent", keywords="shared decision-making", keywords="biomedical informatics", abstract="Background: There is no consensus on which risks to communicate to a prospective surgical patient during informed consent or how. Complicating the process, patient preferences may diverge from clinical assumptions and are often not considered for discussion. Such discrepancies can lead to confusion and resentment, raising the potential for legal action. To overcome these issues, we propose a visual consent tool that incorporates patient preferences and communicates personalized risks to patients using data visualization. We used this platform to identify key effective visual elements to communicate personalized surgical risks. Objective: Our main focus is to understand how to best communicate personalized risks using data visualization. To contextualize patient responses to the main question, we examine how patients perceive risks before surgery (research question 1), how suitably the visual consent tool is able to present personalized surgical risks (research question 2), how well our visualizations convey those personalized surgical risks (research question 3), and how the visual consent tool could improve the informed consent process and how it can be used (research question 4). Methods: We designed a visual consent tool to meet the objectives of our study. To calculate and list personalized surgical risks, we used the American College of Surgeons risk calculator. We created multiple visualization mock-ups using visual elements previously determined to be well-received for risk communication. Semistructured interviews were conducted with patients after surgery, and each of the mock-ups was presented and evaluated independently and in the context of our visual consent tool design. The interviews were transcribed, and thematic analysis was performed to identify major themes. We also applied a quantitative approach to the analysis to assess the prevalence of different perceptions of the visualizations presented in our tool. Results: In total, 20 patients were interviewed, with a median age of 59 (range 29-87) years. Thematic analysis revealed factors that influenced the perception of risk (the surgical procedure, the cognitive capacity of the patient, and the timing of consent; research question 1); factors that influenced the perceived value of risk visualizations (preference for rare event communication, preference for risk visualization, and usefulness of comparison with the average; research question 3); and perceived usefulness and use cases of the visual consent tool (research questions 2 and 4). Most importantly, we found that patients preferred the visual consent tool to current text-based documents and had no unified preferences for risk visualization. Furthermore, our findings suggest that patient concerns were not often represented in existing risk calculators. Conclusions: We identified key elements that influence effective visual risk communication in the perioperative setting and pointed out the limitations of the existing calculators in addressing patient concerns. Patient preference is highly variable and should influence choices regarding risk presentation and visualization. ", doi="10.2196/29118", url="https://humanfactors.jmir.org/2022/2/e29118", url="http://www.ncbi.nlm.nih.gov/pubmed/35486432" } @Article{info:doi/10.2196/36338, author="Krishnamurti, Tamar and Birru Talabi, Mehret and Callegari, S. Lisa and Kazmerski, M. Traci and Borrero, Sonya", title="A Framework for Femtech: Guiding Principles for Developing Digital Reproductive Health Tools in the United States", journal="J Med Internet Res", year="2022", month="Apr", day="28", volume="24", number="4", pages="e36338", keywords="United States", keywords="North America", keywords="femtech", keywords="mHealth", keywords="health equity", keywords="pregnancy", keywords="women's health", keywords="preterm birth", keywords="contraception", keywords="family planning", keywords="reproductive care", keywords="sterilization", keywords="cystic fibrosis", keywords="rheumatic disease", keywords="eHealth", keywords="mobile health", keywords="reproductive health", keywords="digital health", keywords="health technology", keywords="health outcomes", doi="10.2196/36338", url="https://www.jmir.org/2022/4/e36338", url="http://www.ncbi.nlm.nih.gov/pubmed/35482371" } @Article{info:doi/10.2196/33656, author="Crespi, Elizabeth and Hardesty, J. Jeffrey and Nian, Qinghua and Sinamo, Joshua and Welding, Kevin and Kennedy, David Ryan and Cohen, E. Joanna", title="Agreement Between Self-reports and Photos to Assess e-Cigarette Device and Liquid Characteristics in Wave 1 of the Vaping and Patterns of e-Cigarette Use Research Study: Web-Based Longitudinal Cohort Study", journal="J Med Internet Res", year="2022", month="Apr", day="27", volume="24", number="4", pages="e33656", keywords="tobacco", keywords="e-cigarette", keywords="methodology", keywords="internet", keywords="photo", keywords="survey", keywords="self-report", abstract="Background: e-Cigarette device and liquid characteristics are highly customizable; these characteristics impact nicotine delivery and exposure to toxic constituents. It is critical to understand optimal methods for measuring these characteristics to accurately assess their impacts on user behavior and health. Objective: To inform future survey development, we assessed the agreement between responses from survey participants (self-reports) and photos uploaded by participants and the quantity of usable data derived from each approach. Methods: Adult regular e-cigarette users (?5 days per week) aged ?21 years (N=1209) were asked questions about and submitted photos of their most used e-cigarette device (1209/1209, 100\%) and liquid (1132/1209, 93.63\%). Device variables assessed included brand, model, reusability, refillability, display, and adjustable power. Liquid variables included brand, flavor, nicotine concentration, nicotine formulation, and bottle size. For each variable, percentage agreement was calculated where self-report and photo data were available. Krippendorff $\alpha$ and intraclass correlation coefficient (ICC) were calculated for categorical and continuous variables, respectively. Results were stratified by device (disposable, reusable with disposable pods or cartridges, and reusable with refillable pods, cartridges, or tanks) and liquid (customized and noncustomized) type. The sample size for each calculation ranged from 3.89\% (47/1209; model of disposable devices) to 95.12\% (1150/1209; device reusability). Results: Percentage agreement between photos and self-reports was substantial to very high across device and liquid types for all variables except nicotine concentration. These results are consistent with Krippendorff $\alpha$ calculations, except where prevalence bias was suspected. ICC results for nicotine concentration and bottle size were lower than percentage agreement, likely because ICC accounts for the level of disagreement between values. Agreement varied by device and liquid type. For example, percentage agreement for device brand was higher among users of reusable devices (94\%) than among users of disposable devices (75\%). Low percentage agreement may result from poor participant knowledge of characteristics, user modifications of devices inconsistent with manufacturer-intended use, inaccurate or incomplete information on websites, or photo submissions that are not a participant's most used device or liquid. The number of excluded values (eg, self-report was ``don't know'' or no photo submitted) differed between self-reports and photos; for questions asked to participants, self-reports had more usable data than photos for all variables except device model and nicotine formulation. Conclusions: Photos and self-reports yield data of similar accuracy for most variables assessed in this study: device brand, device model, reusability, adjustable power, display, refillability, liquid brand, flavor, and bottle size. Self-reports provided more data for all variables except device model and nicotine formulation. Using these approaches simultaneously may optimize data quantity and quality. Future research should examine how to assess nicotine concentration and variables not included in this study (eg, wattage and resistance) and the resource requirements of these approaches. ", doi="10.2196/33656", url="https://www.jmir.org/2022/4/e33656", url="http://www.ncbi.nlm.nih.gov/pubmed/35475727" } @Article{info:doi/10.2196/35120, author="Amagai, Saki and Pila, Sarah and Kaat, J. Aaron and Nowinski, J. Cindy and Gershon, C. Richard", title="Challenges in Participant Engagement and Retention Using Mobile Health Apps: Literature Review", journal="J Med Internet Res", year="2022", month="Apr", day="26", volume="24", number="4", pages="e35120", keywords="mobile phone", keywords="mHealth", keywords="retention", keywords="engagement", abstract="Background: Mobile health (mHealth) apps are revolutionizing the way clinicians and researchers monitor and manage the health of their participants. However, many studies using mHealth apps are hampered by substantial participant dropout or attrition, which may impact the representativeness of the sample and the effectiveness of the study. Therefore, it is imperative for researchers to understand what makes participants stay with mHealth apps or studies using mHealth apps. Objective: This study aimed to review the current peer-reviewed research literature to identify the notable factors and strategies used in adult participant engagement and retention. Methods: We conducted a systematic search of PubMed, MEDLINE, and PsycINFO databases for mHealth studies that evaluated and assessed issues or strategies to improve the engagement and retention of adults from 2015 to 2020. We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Notable themes were identified and narratively compared among different studies. A binomial regression model was generated to examine the factors affecting retention. Results: Of the 389 identified studies, 62 (15.9\%) were included in this review. Overall, most studies were partially successful in maintaining participant engagement. Factors related to particular elements of the app (eg, feedback, appropriate reminders, and in-app support from peers or coaches) and research strategies (eg, compensation and niche samples) that promote retention were identified. Factors that obstructed retention were also identified (eg, lack of support features, technical difficulties, and usefulness of the app). The regression model results showed that a participant is more likely to drop out than to be retained. Conclusions: Retaining participants is an omnipresent challenge in mHealth studies. The insights from this review can help inform future studies about the factors and strategies to improve participant retention. ", doi="10.2196/35120", url="https://www.jmir.org/2022/4/e35120", url="http://www.ncbi.nlm.nih.gov/pubmed/35471414" } @Article{info:doi/10.2196/21208, author="Ivanova, Julia and Tang, Tianyu and Idouraine, Nassim and Murcko, Anita and Whitfield, Jo Mary and Dye, Christy and Chern, Darwyn and Grando, Adela", title="Behavioral Health Professionals' Perceptions on Patient-Controlled Granular Information Sharing (Part 1): Focus Group Study", journal="JMIR Ment Health", year="2022", month="Apr", day="20", volume="9", number="4", pages="e21208", keywords="behavioral health professional", keywords="granular information", keywords="granular information sharing", keywords="electronic health record", keywords="integrated health care", keywords="electronic consent tool", abstract="Background: Patient-controlled granular information sharing (PC-GIS) allows a patient to select specific health information ``granules,'' such as diagnoses and medications; choose with whom the information is shared; and decide how the information can be used. Previous studies suggest that health professionals have mixed or concerned opinions about the process and impact of PC-GIS for care and research. Further understanding of behavioral health professionals' views on PC-GIS are needed for successful implementation and use of this technology. Objective: The aim of this study was to evaluate changes in health professionals' opinions on PC-GIS before and after a demonstrative case study. Methods: Four focus groups were conducted at two integrated health care facilities: one serious mental illness facility and one general behavioral health facility. A total of 28 participants were given access to outcomes of a previous study where patients had control over medical record sharing. Participants were surveyed before and after focus groups on their views about PC-GIS. Thematic analysis of focus group output was paired with descriptive statistics and exploratory factor analysis of surveys. Results: Behavioral health professionals showed a significant opinion shift toward concern after the focus group intervention, specifically on the topics of patient understanding (P=.001), authorized electronic health record access (P=.03), patient-professional relationship (P=.006), patient control acceptance (P<.001), and patient rights (P=.02). Qualitative methodology supported these results. The themes of professional considerations (2234/4025, 55.5\% of codes) and necessity of health information (260/766, 33.9\%) identified key aspects of PC-GIS concerns. Conclusions: Behavioral health professionals agreed that a trusting patient-professional relationship is integral to the optimal implementation of PC-GIS, but were concerned about the potential negative impacts of PC-GIS on patient safety and quality of care. ", doi="10.2196/21208", url="https://mental.jmir.org/2022/4/e21208", url="http://www.ncbi.nlm.nih.gov/pubmed/35442199" } @Article{info:doi/10.2196/18792, author="Ivanova, Julia and Tang, Tianyu and Idouraine, Nassim and Murcko, Anita and Whitfield, Jo Mary and Dye, Christy and Chern, Darwyn and Grando, Adela", title="Behavioral Health Professionals' Perceptions on Patient-Controlled Granular Information Sharing (Part 2): Focus Group Study", journal="JMIR Ment Health", year="2022", month="Apr", day="20", volume="9", number="4", pages="e18792", keywords="behavioral health", keywords="patient information", keywords="granular information", keywords="electronic health record", keywords="integrated health care", keywords="electronic consent tool", abstract="Background: Patient-directed selection and sharing of health information ``granules'' is known as granular information sharing. In a previous study, patients with behavioral health conditions categorized their own health information into sensitive categories (eg, mental health) and chose the health professionals (eg, pharmacists) who should have access to those records. Little is known about behavioral health professionals' perspectives of patient-controlled granular information sharing (PC-GIS). Objective: This study aimed to assess behavioral health professionals' (1) understanding of and opinions about PC-GIS; (2) accuracy in assessing redacted medical information; (3) reactions to patient rationale for health data categorization, assignment of sensitivity, and sharing choices; and (4) recommendations to improve PC-GIS. Methods: Four 2-hour focus groups and pre- and postsurveys were conducted at 2 facilities. During the focus groups, outcomes from a previous study on patients' choices for medical record sharing were discussed. Thematic analysis was applied to focus group transcripts to address study objectives. Results: A total of 28 health professionals were recruited. Over half (14/25, 56\%) were unaware or provided incorrect definitions of granular information sharing. After PC-GIS was explained, all professionals demonstrated understanding of the terminology and process. Most (26/32 codes, 81\%) recognized that key medical data had been redacted from the study case. A majority (41/62 codes, 66\%) found the patient rationale for categorization and data sharing choices to be unclear. Finally, education and other approaches to inform and engage patients in granular information sharing were recommended. Conclusions: This study provides detailed insights from behavioral health professionals on granular information sharing. Outcomes will inform the development, deployment, and evaluation of an electronic consent tool for granular health data sharing. ", doi="10.2196/18792", url="https://mental.jmir.org/2022/4/e18792", url="http://www.ncbi.nlm.nih.gov/pubmed/35442213" } @Article{info:doi/10.2196/28867, author="Ploderer, Bernd and Rezaei Aghdam, Atae and Burns, Kara", title="Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review", journal="J Med Internet Res", year="2022", month="Apr", day="12", volume="24", number="4", pages="e28867", keywords="patient engagement", keywords="patient-generated health data", keywords="consumer-generated health data", keywords="personal health information", keywords="patient empowerment", keywords="mobile phone", abstract="Background: Patient-generated health data are increasingly used to record health and well-being concerns and engage patients in clinical care. Patient-generated photographs and videos are accessible and meaningful to patients, making them especially relevant during the current COVID-19 pandemic. However, a systematic review of photos and videos used by patients across different areas of health and well-being is lacking. Objective: This review aims to synthesize the existing literature on the health and well-being contexts in which patient-generated photos and videos are used, the value gained by patients and health professionals, and the challenges experienced. Methods: Guided by a framework for scoping reviews, we searched eight health databases (CINAHL, Cochrane Library, Embase, PsycINFO, PubMed, MEDLINE, Scopus, and Web of Science) and one computing database (ACM), returning a total of 28,567 studies. After removing duplicates and screening based on the predefined inclusion criteria, we identified 110 relevant articles. Data were charted and articles were analyzed following an iterative thematic approach with the assistance of NVivo software (version 12; QSR International). Results: Patient-generated photos and videos are used across a wide range of health care services (39/110, 35.5\% articles), for example, to diagnose skin lesions, assess dietary intake, and reflect on personal experiences during therapy. In addition, patients use them to self-manage health and well-being concerns (33/110, 30\%) and to share personal health experiences via social media (36/110, 32.7\%). Photos and videos create significant value for health care (59/110, 53.6\%), where images support diagnosis, explanation, and treatment (functional value). They also provide value directly to patients through enhanced self-determination (39/110, 35.4\%), social (33/110, 30\%), and emotional support (21/110, 19.1\%). However, several challenges emerge when patients create, share, and examine photos and videos, such as limited accessibility (16/110, 14.5\%), incomplete image sets (23/110, 20.9\%), and misinformation through photos and videos shared on social media (17/110, 15.5\%). Conclusions: This review shows that photos and videos engage patients in meaningful ways across different health care activities (eg, diagnosis, treatment, and self-care) for various health conditions. Although photos and videos require effort to capture and involve challenges when patients want to use them in health care, they also engage and empower patients, generating unique value. This review highlights areas for future research and strategies for addressing these challenges. ", doi="10.2196/28867", url="https://www.jmir.org/2022/4/e28867", url="http://www.ncbi.nlm.nih.gov/pubmed/35412458" } @Article{info:doi/10.2196/31659, author="Saifee, Hasnain Danish and Hudnall, Matthew and Raja, Uzma", title="Physician Gender, Patient Risk, and Web-Based Reviews: Longitudinal Study of the Relationship Between Physicians' Gender and Their Web-Based Reviews", journal="J Med Internet Res", year="2022", month="Apr", day="8", volume="24", number="4", pages="e31659", keywords="web-based physician reviews", keywords="gender", keywords="gender bias", keywords="patient perception", keywords="Alabama", keywords="patient risk", abstract="Background: Web-based reviews of physicians have become exceedingly popular among health care consumers since the early 2010s. A factor that can potentially influence these reviews is the gender of the physician, because the physician's gender has been found to influence patient-physician communication. Our study is among the first to conduct a rigorous longitudinal analysis to study the effects of the gender of physicians on their reviews, after accounting for several important clinical factors, including patient risk, physician specialty, and temporal factors, using time fixed effects. In addition, this study is among the first to study the possible gender bias in web-based reviews using statewide data from Alabama, a predominantly rural state with high Medicaid and Medicare use. Objective: This study conducts a longitudinal empirical investigation of the relationship between physician gender and their web-based reviews using data across the state of Alabama, after accounting for patient risk and temporal effects. Methods: We created a unique data set by combining data from web-based physician reviews from the popular physician review website, RateMDs, and clinical data from the Center for Medicare and Medicaid Services for the state of Alabama. We used longitudinal econometric specifications to conduct an econometric analysis, while controlling for several important clinical and review characteristics across four rating dimensions (helpfulness, knowledge, staff, and punctuality). The overall rating and these four rating dimensions from RateMDs were used as the dependent variables, and physician gender was the key explanatory variable in our panel regression models. Results: The panel used to conduct the main econometric analysis included 1093 physicians. After controlling for several clinical and review factors, the physician random effects specifications showed that male physicians receive better web-based ratings than female physicians. Coefficients and corresponding SEs and P values of the binary variable GenderFemale (1 for female physicians and 0 otherwise) with different rating variables as outcomes were as follows: OverallRating (coefficient --0.194, SE 0.060; P=.001), HelpfulnessRating (coefficient --0.221, SE 0.069; P=.001), KnowledgeRating (coefficient --0.230, SE 0.065; P<.001), StaffRating (coefficient --0.123, SE 0.062; P=.049), and PunctualityRating (coefficient --0.200, SE 0.067; P=.003). The negative coefficients indicate a bias toward male physicians versus female physicians for aforementioned rating variables. Conclusions: This study found that female physicians receive lower web-based ratings than male physicians even after accounting for several clinical characteristics associated with the physicians and temporal effects. Although the magnitude of the coefficients of GenderFemale was relatively small, they were statistically significant. This study provides support to the findings on gender bias in the existing health care literature. We contribute to the existing literature by conducting a study using data across the state of Alabama and using a longitudinal econometric analysis, along with incorporating important clinical and review controls associated with the physicians. ", doi="10.2196/31659", url="https://www.jmir.org/2022/4/e31659", url="http://www.ncbi.nlm.nih.gov/pubmed/35394435" } @Article{info:doi/10.2196/29039, author="Schapira, M. Marilyn and Chhatre, Sumedha and Prigge, M. Jason and Meline, Jessica and Kaminstein, Dana and Rodriguez, L. Keri and Fraenkel, Liana and Kravetz, D. Jeffrey and Whittle, Jeff and Bastian, A. Lori and Vachani, Anil and Akers, Scott and Schrand, Susan and Ibarra, V. Jennifer and Asan, Onur", title="A Veteran-Centric Web-Based Decision Aid for Lung Cancer Screening: Usability Analysis", journal="JMIR Form Res", year="2022", month="Apr", day="8", volume="6", number="4", pages="e29039", keywords="lung cancer screening", keywords="decision aid", keywords="usability", keywords="implementation", keywords="cancer screening", keywords="shared decision-making", keywords="veterans", keywords="patient engagement", keywords="mobile phone", abstract="Background: Web-based tools developed to facilitate a shared decision-making (SDM) process may facilitate the implementation of lung cancer screening (LCS), an evidence-based intervention to improve cancer outcomes. Veterans have specific risk factors and shared experiences that affect the benefits and potential harms of LCS and thus may value a veteran-centric LCS decision tool (LCSDecTool). Objective: This study aims to conduct usability testing of an LCSDecTool designed for veterans receiving care at a Veteran Affairs medical center. Methods: Usability testing of the LCSDecTool was conducted in a prototype version (phase 1) and a high-fidelity version (phase 2). A total of 18 veterans and 8 clinicians participated in phase 1, and 43 veterans participated in phase 2. Quantitative outcomes from the users included the System Usability Scale (SUS) and the End User Computing Satisfaction (EUCS) in phase 1 and the SUS, EUCS, and Patient Engagement scale in phase 2. Qualitative data were obtained from observations of user sessions and brief interviews. The results of phase 1 informed the modifications of the prototype for the high-fidelity version. Phase 2 usability testing took place in the context of a pilot hybrid type 1 effectiveness-implementation trial. Results: In the phase 1 prototype usability testing, the mean SUS score (potential range: 0-100) was 81.90 (SD 9.80), corresponding to an excellent level of usability. The mean EUCS score (potential range: 1-5) was 4.30 (SD 0.71). In the phase 2 high-fidelity usability testing, the mean SUS score was 65.76 (SD 15.23), corresponding to a good level of usability. The mean EUCS score was 3.91 (SD 0.95); and the mean Patient Engagement scale score (potential range 1 [low] to 5 [high]) was 4.62 (SD 0.67). The median time to completion in minutes was 13 (IQR 10-16). A thematic analysis of user statements documented during phase 2 high-fidelity usability testing identified the following themes: a low baseline level of awareness and knowledge about LCS increased after use of the LCSDecTool; users sought more detailed descriptions about the LCS process; the LCSDecTool was generally easy to use, but specific navigation challenges remained; some users noted difficulty understanding medical terms used in the LCSDecTool; and use of the tool evoked veterans' struggles with prior attempts at smoking cessation. Conclusions: Our findings support the development and use of this eHealth technology in the primary care clinical setting as a way to engage veterans, inform them about a new cancer control screening test, and prepare them to participate in an SDM discussion with their provider. ", doi="10.2196/29039", url="https://formative.jmir.org/2022/4/e29039", url="http://www.ncbi.nlm.nih.gov/pubmed/35394433" } @Article{info:doi/10.2196/33213, author="Cooper, Drew and Ubben, Tebbe and Knoll, Christine and Ballhausen, Hanne and O'Donnell, Shane and Braune, Katarina and Lewis, Dana", title="Open-source Web Portal for Managing Self-reported Data and Real-world Data Donation in Diabetes Research: Platform Feasibility Study", journal="JMIR Diabetes", year="2022", month="Mar", day="31", volume="7", number="1", pages="e33213", keywords="diabetes", keywords="type 1 diabetes", keywords="automated insulin delivery", keywords="diabetes technology", keywords="open-source", keywords="patient-reported outcomes", keywords="real-world data", keywords="research methods", keywords="mixed methods", keywords="insulin", keywords="digital health", keywords="web portal", abstract="Background: People with diabetes and their support networks have developed open-source automated insulin delivery systems to help manage their diabetes therapy, as well as to improve their quality of life and glycemic outcomes. Under the hashtag \#WeAreNotWaiting, a wealth of knowledge and real-world data have been generated by users of these systems but have been left largely untapped by research; opportunities for such multimodal studies remain open. Objective: We aimed to evaluate the feasibility of several aspects of open-source automated insulin delivery systems including challenges related to data management and security across multiple disparate web-based platforms and challenges related to implementing follow-up studies. Methods: We developed a mixed methods study to collect questionnaire responses and anonymized diabetes data donated by participants---which included adults and children with diabetes and their partners or caregivers recruited through multiple diabetes online communities. We managed both front-end participant interactions and back-end data management with our web portal (called the Gateway). Participant questionnaire data from electronic data capture (REDCap) and personal device data aggregation (Open Humans) platforms were pseudonymously and securely linked and stored within a custom-built database that used both open-source and commercial software. Participants were later given the option to include their health care providers in the study to validate their questionnaire responses; the database architecture was designed specifically with this kind of extensibility in mind. Results: Of 1052 visitors to the study landing page, 930 participated and completed at least one questionnaire. After the implementation of health care professional validation of self-reported clinical outcomes to the study, an additional 164 individuals visited the landing page, with 142 completing at least one questionnaire. Of the optional study elements, 7 participant--health care professional dyads participated in the survey, and 97 participants who completed the survey donated their anonymized medical device data. Conclusions: The platform was accessible to participants while maintaining compliance with data regulations. The Gateway formalized a system of automated data matching between multiple data sets, which was a major benefit to researchers. Scalability of the platform was demonstrated with the later addition of self-reported data validation. This study demonstrated the feasibility of custom software solutions in addressing complex study designs. The Gateway portal code has been made available open-source and can be leveraged by other research groups. ", doi="10.2196/33213", url="https://diabetes.jmir.org/2022/1/e33213", url="http://www.ncbi.nlm.nih.gov/pubmed/35357312" } @Article{info:doi/10.2196/26511, author="Maramba, Daniel Inocencio and Jones, Ray and Austin, Daniela and Edwards, Katie and Meinert, Edward and Chatterjee, Arunangsu", title="The Role of Health Kiosks: Scoping Review", journal="JMIR Med Inform", year="2022", month="Mar", day="29", volume="10", number="3", pages="e26511", keywords="kiosk", keywords="health systems", keywords="internet", keywords="review", keywords="online health information", keywords="telemonitoring", keywords="teleconsultation", keywords="consultation", keywords="telemedicine", keywords="behavior", keywords="promotion", keywords="health service", keywords="user experience", keywords="barrier", keywords="facilitator", keywords="remote consultation", keywords="mobile phone", abstract="Background: Health kiosks are publicly accessible computing devices that provide access to services, including health information provision, clinical measurement collection, patient self--check-in, telemonitoring, and teleconsultation. Although the increase in internet access and ownership of smart personal devices could make kiosks redundant, recent reports have predicted that the market will continue to grow. Objective: We seek to clarify the current and future roles of health kiosks by investigating the settings, roles, and clinical domains in which kiosks are used; whether usability evaluations of health kiosks are being reported, and if so, what methods are being used; and what the barriers and facilitators are for the deployment of kiosks. Methods: We conducted a scoping review using a bibliographic search of Google Scholar, PubMed, and Web of Science databases for studies and other publications between January 2009 and June 2020. Eligible papers described the implementation as primary studies, systematic reviews, or news and feature articles. Additional reports were obtained by manual searching and querying the key informants. For each article, we abstracted settings, purposes, health domains, whether the kiosk was opportunistic or integrated with a clinical pathway, and whether the kiosk included usability testing. We then summarized the data in frequency tables. Results: A total of 141 articles were included, of which 134 (95\%) were primary studies, and 7 (5\%) were reviews. Approximately 47\% (63/134) of the primary studies described kiosks in secondary care settings. Other settings included community (32/134, 23.9\%), primary care (24/134, 17.9\%), and pharmacies (8/134, 6\%). The most common roles of the health kiosks were providing health information (47/134, 35.1\%), taking clinical measurements (28/134, 20.9\%), screening (17/134, 12.7\%), telehealth (11/134, 8.2\%), and patient registration (8/134, 6.0\%). The 5 most frequent health domains were multiple conditions (33/134, 24.6\%), HIV (10/134, 7.5\%), hypertension (10/134, 7.5\%), pediatric injuries (7/134, 5.2\%), health and well-being (6/134, 4.5\%), and drug monitoring (6/134, 4.5\%). Kiosks were integrated into the clinical pathway in 70.1\% (94/134) of studies, opportunistic kiosks accounted for 23.9\% (32/134) of studies, and in 6\% (8/134) of studies, kiosks were used in both. Usability evaluations of kiosks were reported in 20.1\% (27/134) of papers. Barriers (e.g., use of expensive proprietary software) and enablers (e.g., handling of on-demand consultations) of deploying health kiosks were identified. Conclusions: Health kiosks still play a vital role in the health care system, including collecting clinical measurements and providing access to web-based health services and information to those with little or no digital literacy skills and others without personal internet access. We identified research gaps, such as training needs for teleconsultations and scant reporting on usability evaluation methods. ", doi="10.2196/26511", url="https://medinform.jmir.org/2022/3/e26511", url="http://www.ncbi.nlm.nih.gov/pubmed/35348457" } @Article{info:doi/10.2196/26461, author="Stambler, Mollie Danielle and Feddema, Erin and Riggins, Olivia and Campeau, Kari and Breuch, Kastman Lee-Ann and Kessler, M. Molly and Misono, Stephanie", title="REDCap Delivery of a Web-Based Intervention for Patients With Voice Disorders: Usability Study", journal="JMIR Hum Factors", year="2022", month="Mar", day="25", volume="9", number="1", pages="e26461", keywords="web-based intervention", keywords="REDCap", keywords="voice disorders", keywords="usability study", keywords="heuristics", keywords="eHealth", keywords="online", keywords="health", keywords="web-based participation", keywords="patients", keywords="web-based platform", abstract="Background: Web-based health interventions are increasingly common and are promising for patients with voice disorders because web-based participation does not require voice use. To address needs such as Health Insurance Portability and Accountability Act compliance, unique user access, the ability to send automated reminders, and a limited development budget, we used the Research Electronic Data Capture (REDCap) data management platform to deliver a patient-facing psychological intervention designed for patients with voice disorders. This was a novel use of REDCap. Objective: We aimed to evaluate the usability of the intervention, with this intervention serving as a use case for REDCap-based patient-facing interventions. Methods: We used REDCap survey instruments to develop the web-based voice intervention modules, then conducted usability evaluations using (1) heuristic evaluations by 2 evaluators, and (2) formal usability testing with 7 participants, consisting of predetermined tasks, a think-aloud protocol, ease-of-use measurements, a product reaction card, and a debriefing interview. Results: Heuristic evaluations found strengths in visibility of system status and real-world match, and weaknesses in user control and help documentation. Based on this feedback, changes to the intervention were made before usability testing. Overall, usability testing participants found the intervention useful and easy to use, although testing revealed some concerns with design, content, and terminology. Some concerns were readily addressed, and others required adaptations within REDCap. Conclusions: The REDCap version of a complex web-based patient-facing intervention performed well in heuristic evaluation and formal usability testing. REDCap can effectively be used for patient-facing intervention delivery, particularly if the limitations of the platform are anticipated and mitigated. ", doi="10.2196/26461", url="https://humanfactors.jmir.org/2022/1/e26461", url="http://www.ncbi.nlm.nih.gov/pubmed/35333191" } @Article{info:doi/10.2196/23535, author="Idris, Y. Muhammed and Alema-Mensah, Ernest and Olorundare, Elizabeth and Mohammad, Mohammad and Brown, Michelle and Ofili, Elizabeth and Pemu, Priscilla", title="Exploring the Discursive Emphasis on Patients and Coaches Who Participated in Technology-Assisted Diabetes Self-management Education: Clinical Implementation Study of Health360x", journal="J Med Internet Res", year="2022", month="Mar", day="18", volume="24", number="3", pages="e23535", keywords="self-management", keywords="structural topic modeling", keywords="coaching", keywords="diabetes", keywords="minority populations", keywords="mobile phone", abstract="Background: A critical unmet need for underserved patients with diabetes is regular access to sufficient support for diabetes self-management. Although advances in digital technologies have made way for eHealth applications that provide a scalable path for tailored interventions for self-management of chronic conditions, health and digital literacy has remained an obstacle to leveraging these technologies for effective diabetes self-management education. Studies have shown that the availability of coaches helps to maintain engagement in internet-based studies and improves self-efficacy for behavior change. However, little is known about the substances involved in these interactions. Objective: This study aims to compare the content of conversations between patient--coach pairs that achieved their self-management goals and those that did not. The context is a clinical implementation study of diabetes self-management behavior change using Health360x within the practices of the Morehouse Choice Accountable Care Organization in the Atlanta metro area. Health360x is a coach-assisted consumer health information technology designed to support self-management skills acquisition and behavior among underserved, high-risk patients with diabetes. Methods: We provide a novel analysis of the discursive emphasis on patients and coaches. We examined transcripts of visits using a structural topic model to estimate topic content and prevalence as a function of patient and coach characteristics. We compared topics between patient--coach pairs that achieved diabetes-related self-management goals and those who did not. We also estimated a regression in which utterances are the units, the dependent variable is the proportion of an utterance that is about a given topic, and the independent variables are speaker types and explored other themes. Results: Transcripts from 50 patients who were recruited and consented, starting in February 2015, were analyzed. A total of 44 topics were estimated for patient--coach pairs that achieved their intended health goals and 50 topics for those who did not. Analysis of the structural topic model results indicated that coaches in patient--coach pairs that were able to achieve self-management goals provided more contextual feedback and probed into patients' experience with technology and trust in consumer information technologies. We also found that discussions around problem areas and stress, support ($\beta$Coach=.015; P<.001), initial visits ($\beta$Coach=.02; P<.001), problems with technology ($\beta$Coach=.01; P<.001), health eating goals ($\beta$Coach=.01; P=.04), diabetes knowledge ($\beta$Coach=.02; P<.001), managing blood sugar ($\beta$Coach=.03; P<.001), and using Health360x ($\beta$Coach=.003; P=.03) were dominated by coaches. Conclusions: Coach-facilitated, technology-based diabetes self-management education can help underserved patients with diabetes. Our use of topic modeling in this application sheds light on the actual dynamics in conversations between patients and coaches. Knowledge of the key elements for successful coach--patient interactions based on the analysis of transcripts could be applied to understanding everyday patient--provider encounters, given the recent paradigm shift around the use of telehealth. ", doi="10.2196/23535", url="https://www.jmir.org/2022/3/e23535", url="http://www.ncbi.nlm.nih.gov/pubmed/35302506" } @Article{info:doi/10.2196/33584, author="Davis, Selena and Antonio, Marcy and Smith, Mindy and Burgener, Paul and Lavallee, C. Danielle and Price, Morgan and Fletcher, C. Sarah and Lau, Francis", title="Paving the Way for Electronic Patient-Centered Measurement in Team-Based Primary Care: Integrated Knowledge Translation Approach", journal="JMIR Form Res", year="2022", month="Mar", day="18", volume="6", number="3", pages="e33584", keywords="patient-centered measurement", keywords="patient-centered care", keywords="primary health care", keywords="team-based care", keywords="knowledge translation", keywords="patient-oriented research", keywords="patient portals", keywords="patient-generated health data", keywords="patient-reported experience measures", keywords="patient-reported outcome measures", keywords="rural health services", keywords="patient data", keywords="digital health", keywords="electronic data", keywords="patient portal", keywords="mental health", abstract="Background: Patient-centered measurement (PCM) aims to improve the overall quality of care through the collection and sharing of patient values, outcomes, and perspectives. However, the use of PCM in care team decisions remains limited. Integrated knowledge translation (IKT) offers a collaborative, adaptive approach to explore best practices for incorporating PCM into primary care practices by involving knowledge users, including patients and providers, in the exploratory process. Objective: This study aims to test the feasibility of using patient-generated data in team-based care; describe the use of these data for team-based mental health care; and summarize patient and provider care experiences with PCM. Methods: We conducted a multi-method exploratory study in a rural team-based primary care clinic using IKT to co-design, implement, and evaluate the use of PCM in team-based mental health care. Care pathways, workflows, and quality improvement activities were adjusted iteratively to improve integration efforts. Patient and provider experiences were evaluated using individual interviews relating to the use of PCM and patient portals in practice. All meeting notes, interview summaries, and emails were analyzed to create a narrative evaluation. Results: During co-design, a care workflow was developed to incorporate electronically collected patient-generated data from the patient portal into the electronic medical record, and customized educational tools and resources were added. During implementation, care pathways and patient workflows for PCM were developed. Patients found portal use easy, educational, and validating, but data entries were not used during care visits. Providers saw the portal as extra work, and the lack of portal and electronic medical record integration was a major barrier. The IKT approach was invaluable for addressing workflow changes and understanding the ongoing barriers to PCM use and quality improvement. Conclusions: Although the culture toward using PCM is changing, the use of PCM during care has not been successful. Patients felt validated and supported through portal use and could be empowered to bring these data to their visits. Training, modeling, and adaptable PCM methods are required before PCM can be integrated into routine care. ", doi="10.2196/33584", url="https://formative.jmir.org/2022/3/e33584", url="http://www.ncbi.nlm.nih.gov/pubmed/35302508" } @Article{info:doi/10.2196/32678, author="Medero, Kristina and Merrill Jr, Kelly and Ross, Quinn Morgan", title="Modeling Access Across the Digital Divide for Intersectional Groups Seeking Web-Based Health Information: National Survey", journal="J Med Internet Res", year="2022", month="Mar", day="15", volume="24", number="3", pages="e32678", keywords="Black", keywords="African American", keywords="first-level digital divide", keywords="health disparities", keywords="home computer", keywords="internet access", keywords="intersectionality", keywords="Latino", keywords="Latine", keywords="Hispanic", keywords="mobile", keywords="online health information seeking", keywords="public computer", keywords="structural equation modeling", keywords="work computer", keywords="mobile phone", abstract="Background: The digital divide refers to technological disparities based on demographic characteristics (eg, race and ethnicity). Lack of physical access to the internet inhibits online health information seeking (OHIS) and exacerbates health disparities. Research on the digital divide examines where and how people access the internet, whereas research on OHIS investigates how intersectional identities influence OHIS. We combine these perspectives to explicate how unique context--device access pairings operate differently across intersectional identities---particularly racial and ethnic groups---in the domain of OHIS. Objective: This study aims to examine how different types of internet access relate to OHIS for different racial and ethnic groups. We investigate relationships among predisposing characteristics (ie, age, sex, education, and income), internet access (home computer, public computer, work computer, and mobile), health needs, and OHIS. Methods: Analysis was conducted using data from the 2019 Health Information National Trends Survey. Our theoretical model of OHIS explicates the roles of internet access and health needs for racial and ethnic minority groups' OHIS. Participant responses were analyzed using structural equation modeling. Three separate group structural equation modeling models were specified based on Black, Latine, and White self-categorizations. Results: Overall, predisposing characteristics (ie, age, sex, education, and income) were associated with internet access, health needs, and OHIS; internet access was associated with OHIS; and health needs were associated with OHIS. Home computer and mobile access were most consistently associated with OHIS. Several notable linkages between predisposing characteristics and internet access differed for Black and Latine individuals. Older racial and ethnic minorities tended to access the internet on home and public computers less frequently; home computer access was a stronger predictor of OHIS for White individuals, and mobile access was a stronger predictor of OHIS for non-White individuals. Conclusions: Our findings necessitate a deeper unpacking of how physical internet access, the foundational and multifaceted level of the digital divide, affects specific racial and ethnic groups and their OHIS. We not only find support for prior work on the digital divide but also surface new insights, including distinct impacts of context--device access pairings for OHIS and several relationships that differ between racial and ethnic groups. As such, we propose interventions with an intersectional approach to access to ameliorate the impact of the digital divide. ", doi="10.2196/32678", url="https://www.jmir.org/2022/3/e32678", url="http://www.ncbi.nlm.nih.gov/pubmed/35289761" } @Article{info:doi/10.2196/33060, author="LaMonica, M. Haley and Iorfino, Frank and Lee, Yeeun Grace and Piper, Sarah and Occhipinti, Jo-An and Davenport, A. Tracey and Cross, Shane and Milton, Alyssa and Ospina-Pinillos, Laura and Whittle, Lisa and Rowe, C. Shelley and Dowling, Mitchell and Stewart, Elizabeth and Ottavio, Antonia and Hockey, Samuel and Cheng, Sze Vanessa Wan and Burns, Jane and Scott, M. Elizabeth and Hickie, B. Ian", title="Informing the Future of Integrated Digital and Clinical Mental Health Care: Synthesis of the Outcomes From Project Synergy", journal="JMIR Ment Health", year="2022", month="Mar", day="9", volume="9", number="3", pages="e33060", keywords="mental health", keywords="technology", keywords="co-design", keywords="participatory research", keywords="health care reform", keywords="stakeholder participation", keywords="mobile phone", abstract="Background: Globally, there are fundamental shortcomings in mental health care systems, including restricted access, siloed services, interventions that are poorly matched to service users' needs, underuse of personal outcome monitoring to track progress, exclusion of family and carers, and suboptimal experiences of care. Health information technologies (HITs) hold great potential to improve these aspects that underpin the enhanced quality of mental health care. Objective: Project Synergy aimed to co-design, implement, and evaluate novel HITs, as exemplified by the InnoWell Platform, to work with standard health care organizations. The goals were to deliver improved outcomes for specific populations under focus and support organizations to enact significant system-level reforms. Methods: Participating health care organizations included the following: Open Arms--Veterans \& Families Counselling (in Sydney and Lismore, New South Wales [NSW]); NSW North Coast headspace centers for youth (Port Macquarie, Coffs Harbour, Grafton, Lismore, and Tweed Heads); the Butterfly Foundation's National Helpline for eating disorders; Kildare Road Medical Centre for enhanced primary care; and Connect to Wellbeing North Coast NSW (administered by Neami National), for population-based intake and assessment. Service users, families and carers, health professionals, and administrators of services across Australia were actively engaged in the configuration of the InnoWell Platform to meet service needs, identify barriers to and facilitators of quality mental health care, and highlight potentially the best points in the service pathway to integrate the InnoWell Platform. The locally configured InnoWell Platform was then implemented within the respective services. A mixed methods approach, including surveys, semistructured interviews, and workshops, was used to evaluate the impact of the InnoWell Platform. A participatory systems modeling approach involving co-design with local stakeholders was also undertaken to simulate the likely impact of the platform in combination with other services being considered for implementation within the North Coast Primary Health Network to explore resulting impacts on mental health outcomes, including suicide prevention. Results: Despite overwhelming support for integrating digital health solutions into mental health service settings and promising impacts of the platform simulated under idealized implementation conditions, our results emphasized that successful implementation is dependent on health professional and service readiness for change, leadership at the local service level, the appropriateness and responsiveness of the technology for the target end users, and, critically, funding models being available to support implementation. The key places of interoperability of digital solutions and a willingness to use technology to coordinate health care system use were also highlighted. Conclusions: Although the COVID-19 pandemic has resulted in the widespread acceptance of very basic digital health solutions, Project Synergy highlights the critical need to support equity of access to HITs, provide funding for digital infrastructure and digital mental health care, and actively promote the use of technology-enabled, coordinated systems of care. ", doi="10.2196/33060", url="https://mental.jmir.org/2022/3/e33060", url="http://www.ncbi.nlm.nih.gov/pubmed/34974414" } @Article{info:doi/10.2196/26764, author="Jackson, N. Devlon and Sehgal, Neil and Baur, Cynthia", title="Benefits of mHealth Co-design for African American and Hispanic Adults: Multi-Method Participatory Research for a Health Information App", journal="JMIR Form Res", year="2022", month="Mar", day="9", volume="6", number="3", pages="e26764", keywords="mHealth app design", keywords="health literacy", keywords="health disparities", keywords="health equity", keywords="African Americans", keywords="Hispanics", keywords="mobile phone", abstract="Background: Participatory research methodologies can provide insight into the use of mobile health (mHealth) apps, cultural preferences and needs, and health literacy issues for racial and ethnic groups, such as African Americans and Hispanics who experience health disparities. Objective: This methodological paper aims to describe a 1-year multi-method participatory research process that directly engaged English-speaking African American and bilingual or Spanish-speaking Hispanic adults in designing a prevention-focused, personalized mHealth, information-seeking smartphone app. We report design team participants' experiences with the methods to show why our approach is valuable in producing apps that are more aligned with their needs. Methods: Three design sessions were conducted to inform the iteration of a prevention-focused, personalized mHealth, information-seeking app. The research team led sessions with 2 community member design teams. Design team participants described their goals, motives, and interests regarding prevention information using different approaches, such as collage and card sorting (design session 1), interaction with the app prototype (design session 2), and rating of cultural appropriateness strategies (design session 3). Results: Each design team had 5 to 6 participants: 2 to 3 male participants and 3 female participants aged between 30 and 76 years. Design team participants shared their likes and dislikes about the sessions and the overall experience of the design sessions. Both African American and Hispanic teams reported positive participation experience. The primary reasons included the opportunity for their views to be heard, collectively working together in the design process, having their apprehension about mHealth reduced, and an opportunity to increase their knowledge of how they could manage their health through mHealth. The feedback from each session informed the following design sessions and a community-engaged process. In addition, the specific findings for each design session informed the design of the app for both communities. Conclusions: This multi-method participatory research process revealed 4 key lessons learned and recommendations for future research in mHealth app design for African Americans and Hispanics. Lesson 1---community partnerships are key because they provide the chain of trust that helps African American and Hispanic participants feel comfortable participating in app research. Lesson 2---community-based participatory research principles continue to yield promising results to engage these populations in mHealth research. Lesson 3---interactive design sessions uncover participants' needs and development opportunities for mHealth tools. Lesson 4---multiple design sessions with different methods provide an in-depth understanding of participants' mHealth preferences and needs. Future developers should consider these methods and lessons to ensure health apps in the marketplace contribute to eliminating health disparities and achieving health equity. ", doi="10.2196/26764", url="https://formative.jmir.org/2022/3/e26764", url="http://www.ncbi.nlm.nih.gov/pubmed/35262496" } @Article{info:doi/10.2196/29422, author="Willis, Erin and Delbaere, Marjorie", title="Patient Influencers: The Next Frontier in Direct-to-Consumer Pharmaceutical Marketing", journal="J Med Internet Res", year="2022", month="Mar", day="1", volume="24", number="3", pages="e29422", keywords="social media", keywords="influencers", keywords="health", keywords="pharmaceutical marketing", keywords="direct-to-consumer advertising", keywords="relationship marketing", keywords="marketing", keywords="advertising", keywords="pharmaceuticals", keywords="ethics", doi="10.2196/29422", url="https://www.jmir.org/2022/3/e29422", url="http://www.ncbi.nlm.nih.gov/pubmed/35230241" } @Article{info:doi/10.2196/29821, author="Sivaratnam, Surabhi and Hwang, Kyobin and Chee-A-Tow, Alyssandra and Ren, Lily and Fang, Geoffrey and Jibb, Lindsay", title="Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review", journal="J Med Internet Res", year="2022", month="Feb", day="21", volume="24", number="2", pages="e29821", keywords="social media", keywords="research priority-setting", keywords="knowledge user", keywords="scoping review", abstract="Background: The need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media--based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. Objective: This review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media--based research approaches, as well as recommendations for prospective campaigns. Methods: We searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. Results: A total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform--based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members' and external organizations' social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. Conclusions: Social media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas. ", doi="10.2196/29821", url="https://www.jmir.org/2022/2/e29821", url="http://www.ncbi.nlm.nih.gov/pubmed/35188476" } @Article{info:doi/10.2196/30973, author="Cha, Jinhee and West, W. Ian and Brockman, A. Tabetha and Soto, Valdez Miguel and Balls-Berry, E. Joyce and Eder, Milton and Patten, A. Christi and Cohen, L. Elisia", title="Use of Live Community Events on Facebook to Share Health and Clinical Research Information With a Minnesota Statewide Community: Exploratory Study", journal="JMIR Form Res", year="2022", month="Feb", day="18", volume="6", number="2", pages="e30973", keywords="social media", keywords="virtual", keywords="digital", keywords="community engagement", keywords="engagement", keywords="retention", keywords="Facebook", keywords="health information", keywords="information sharing", keywords="communication", keywords="participation", keywords="eHealth", abstract="Background: Community engagement can make a substantial difference in health outcomes and strengthen the capacity to deal with disruptive public health events such as the COVID-19 pandemic. Social media platforms such as Facebook are a promising avenue to reach the broader public and enhance access to clinical and translational science, and require further evaluation from the scientific community. Objective: This study aims to describe the use of live community events to enhance communication about clinical and health research through a Facebook platform case study (Minnesota [MN] Research Link) with a Minnesota statewide community. We examined variables associated with video engagement including video length and type of posting. Methods: From June 2019 to February 2021, MN Research Link streamed 38 live community events on its public Facebook page, MN Research Link. Live community events highlighted different investigators' clinical and health research in the areas of mental health, health and wellness, chronic diseases, and immunology/infectious diseases. Facebook analytics were used to determine the number of views, total minutes viewed, engagement metrics, and audience retention. An engagement rate was calculated by the total number of interactions (likes, shares, and comments) divided by the total length of the live event by the type of live community event. Results: The 38 live community events averaged 23 minutes and 1 second in duration. The total time viewed for all 38 videos was 10 hours, 44 minutes, and 40 seconds. Viewers' watch time averaged 23 seconds of content per video. After adjusting for video length, promotional videos and research presentations had the highest engagement and retention rates. Events that included audience participation did not have higher retention rates compared to events without audience participation. Conclusions: The use of live community events showed adequate levels of engagement from participants. A view time of 23 seconds on average per video suggests that short informational videos engage viewers of clinical and translational science content. Live community events on Facebook can be an effective method of advancing health promotion and clinical and translational science content; however, certain types of events have more impact on engagement than others. ", doi="10.2196/30973", url="https://formative.jmir.org/2022/2/e30973", url="http://www.ncbi.nlm.nih.gov/pubmed/35179514" } @Article{info:doi/10.2196/30108, author="Ghweeba, Mayada and Lindenmeyer, Antje and Shishi, Sobhi and Waheed, Amani and Kofi, Mostafa and Amer, Shaymaa", title="The Attitudes of Egyptian Web-Based Health Information Seekers Toward Health Information Provided Through the Internet: Qualitative Study", journal="JMIR Form Res", year="2022", month="Feb", day="18", volume="6", number="2", pages="e30108", keywords="Egyptian internet users", keywords="online health information", keywords="doctor--patient relationship", abstract="Background: The internet has become an established source of health information for many Egyptian internet users. Understanding users' attitudes toward the benefits and limitations of web-based health information will explain the influence of this information on users' health-related behavior and decisions. Objective: This qualitative study aims to understand the attitude of Egyptian internet users toward internet health information and to explore the impact of obtained health information on users' behavior and on their physician-patient relationship. Methods: For this qualitative study, semistructured interviews were conducted with a total of 49 participants (41/49, 84\% Egyptian internet users and 8/49, 16\% physicians) who participated in focus groups or individual interviews. We used a thematic analysis approach to explain and demonstrate participants' views, thoughts, and experiences in using web-based health information. Results: The internet has become an important source of health information in comparison with other health information sources and is the central theme that has emerged across the thematic analysis. The attitude toward the use of internet health was classified into three main themes: feeling toward web-based health information (with subthemes: favoring, disliking, neutral, or having ambivalence feelings), motivators to seek internet health information, and behavioral changes using internet health information (subthemes: confidence, satisfaction, and improved knowledge). Themes that emerged from physicians' interviews included the accessibility of the internet health information, good communication, and coordination of care between patients and their physicians, and the active engagement of patients with their management plan. Conclusions: The internet has become an essential source of health information for Egyptian adults. Internet health information can improve the patient-physician relationship, especially when users discuss the obtained health information with their physician. Internet health information provided seekers with social support and self-confidence when making health decisions. ", doi="10.2196/30108", url="https://formative.jmir.org/2022/2/e30108", url="http://www.ncbi.nlm.nih.gov/pubmed/35179505" } @Article{info:doi/10.2196/23354, author="Luo, Aijing and Qin, Lu and Yuan, Yifeng and Yang, Zhengzijin and Liu, Fei and Huang, Panhao and Xie, Wenzhao", title="The Effect of Online Health Information Seeking on Physician-Patient Relationships: Systematic Review", journal="J Med Internet Res", year="2022", month="Feb", day="10", volume="24", number="2", pages="e23354", keywords="online health information", keywords="search behavior", keywords="physician-patient relationship", keywords="physician-patient consultation.", abstract="Background: The internet has now become part of human life and is constantly changing people's way of life. With the increasing popularity of online health information (OHI), it has been found that OHI can affect the physician-patient relationship by influencing patient behaviors. Objective: This study aims to systematically investigate the impact of OHI-seeking behavior on the physician-patient relationship. Methods: Literature retrieval was conducted on 4 databases (Web of Science, PubMed, China National Knowledge Infrastructure, SinoMed), and the time limit for literature publication was before August 1, 2021. Results: We selected 53 target papers (42 [79\%] English papers and 11 [21\%] Chinese papers) that met the inclusion criteria. Of these, 31 (58\%) papers believe that patients' OHI behavior can enable them to participate in their own medical care, improve patient compliance, and improve the physician-patient relationship. In addition, 14 (26\%) papers maintain a neutral attitude, some believing that OHI behavior has no significant effect on doctors and patients and others believing that due to changes in the factors affecting OHI behavior, they will have a negative or a positive impact. Furthermore, 8 (15\%) papers believe that OHI search behavior has a negative impact on doctors and patients, while 6 (11\%) papers show that OHI reduces Chinese patients' trust in doctors. Conclusions: Our main findings showed that (1) OHI-seeking behavior has an impact on patients' psychology, behavior, and evaluation of doctors; (2) whether patients choose to discuss OHI with doctors has different effects on the physician-patient relationship; and (3) the negative impact of OHI on China's internet users is worthy of attention. Due to the low quality of OHI, poor health information literacy, short physician-patient communication time, and various types of negative news, patients' trust in doctors has declined, thus affecting the physician-patient relationship. Improvement of people's health information literacy and the quality of OHI are important factors that promote the positive impact of OHI on the physician-patient relationship. ", doi="10.2196/23354", url="https://www.jmir.org/2022/2/e23354", url="http://www.ncbi.nlm.nih.gov/pubmed/35142620" } @Article{info:doi/10.2196/27597, author="Barak Ventura, Roni and Stewart Hughes, Kora and Nov, Oded and Raghavan, Preeti and Ruiz Mar{\'i}n, Manuel and Porfiri, Maurizio", title="Data-Driven Classification of Human Movements in Virtual Reality--Based Serious Games: Preclinical Rehabilitation Study in Citizen Science", journal="JMIR Serious Games", year="2022", month="Feb", day="10", volume="10", number="1", pages="e27597", keywords="motion analysis", keywords="principal component analysis", keywords="telerehabilitation", keywords="virtual reality", abstract="Background: Sustained engagement is essential for the success of telerehabilitation programs. However, patients' lack of motivation and adherence could undermine these goals. To overcome this challenge, physical exercises have often been gamified. Building on the advantages of serious games, we propose a citizen science--based approach in which patients perform scientific tasks by using interactive interfaces and help advance scientific causes of their choice. This approach capitalizes on human intellect and benevolence while promoting learning. To further enhance engagement, we propose performing citizen science activities in immersive media, such as virtual reality (VR). Objective: This study aims to present a novel methodology to facilitate the remote identification and classification of human movements for the automatic assessment of motor performance in telerehabilitation. The data-driven approach is presented in the context of a citizen science software dedicated to bimanual training in VR. Specifically, users interact with the interface and make contributions to an environmental citizen science project while moving both arms in concert. Methods: In all, 9 healthy individuals interacted with the citizen science software by using a commercial VR gaming device. The software included a calibration phase to evaluate the users' range of motion along the 3 anatomical planes of motion and to adapt the sensitivity of the software's response to their movements. During calibration, the time series of the users' movements were recorded by the sensors embedded in the device. We performed principal component analysis to identify salient features of movements and then applied a bagged trees ensemble classifier to classify the movements. Results: The classification achieved high performance, reaching 99.9\% accuracy. Among the movements, elbow flexion was the most accurately classified movement (99.2\%), and horizontal shoulder abduction to the right side of the body was the most misclassified movement (98.8\%). Conclusions: Coordinated bimanual movements in VR can be classified with high accuracy. Our findings lay the foundation for the development of motion analysis algorithms in VR-mediated telerehabilitation. ", doi="10.2196/27597", url="https://games.jmir.org/2022/1/e27597", url="http://www.ncbi.nlm.nih.gov/pubmed/35142629" } @Article{info:doi/10.2196/20702, author="Naeem, Iffat and Quan, Hude and Singh, Shaminder and Chowdhury, Nashit and Chowdhury, Mohammad and Saini, Vineet and TC, Turin", title="Factors Associated With Willingness to Share Health Information: Rapid Review", journal="JMIR Hum Factors", year="2022", month="Feb", day="9", volume="9", number="1", pages="e20702", keywords="health information", keywords="information sharing", keywords="health data", keywords="EMR", keywords="PHR", keywords="mobile phone", abstract="Background: To expand research and strategies to prevent disease, comprehensive and real-time data are essential. Health data are increasingly available from platforms such as pharmaceuticals, genomics, health care imaging, medical procedures, wearable devices, and internet activity. Further, health data are integrated with an individual's sociodemographic information, medical conditions, genetics, treatments, and health care. Ultimately, health information generation and flow are controlled by the patient or participant; however, there is a lack of understanding about the factors that influence willingness to share health information. A synthesis of the current literature on the multifactorial nature of health information sharing preferences is required to understand health information exchange. Objective: The objectives of this review are to identify peer-reviewed literature that reported factors associated with health information sharing and to organize factors into cohesive themes and present a narrative synthesis of factors related to willingness to share health information. Methods: This review uses a rapid review methodology to gather literature regarding willingness to share health information within the context of eHealth, which includes electronic health records, personal health records, mobile health information, general health information, or information on social determinants of health. MEDLINE and Google Scholar were searched using keywords such as electronic health records AND data sharing OR sharing preference OR willingness to share. The search was limited to any population that excluded health care workers or practitioners, and the participants aged ?18 years within the US or Canadian context. The data abstraction process using thematic analysis where any factors associated with sharing health information were highlighted and coded inductively within each article. On the basis of shared meaning, the coded factors were collated into major themes. Results: A total of 26 research articles met our inclusion criteria and were included in the qualitative analysis. The inductive thematic coding process revealed multiple major themes related to sharing health information. Conclusions: This review emphasized the importance of data generators' viewpoints and the complex systems of factors that shape their decision to share health information. The themes explored in this study emphasize the importance of trust at multiple levels to develop effective information exchange partnerships. In the case of improving precision health care, addressing the factors presented here that influence willingness to share information can improve sharing capacity for individuals and allow researchers to reorient their methods to address hesitation in sharing health information. ", doi="10.2196/20702", url="https://humanfactors.jmir.org/2022/1/e20702", url="http://www.ncbi.nlm.nih.gov/pubmed/35138263" } @Article{info:doi/10.2196/29691, author="Nguyen, Thu Van and Ravaud, Philippe and Tran, Thi Viet and Young, Bridget and Boutron, Isabelle", title="Patients' Perspectives on Transforming Clinical Trial Participation: Large Online Vignette-based Survey", journal="J Med Internet Res", year="2022", month="Feb", day="1", volume="24", number="2", pages="e29691", keywords="randomized controlled trial", keywords="remote trial", keywords="telemedicine", keywords="patient experience", keywords="trial participation", keywords="RCTs", keywords="participation", keywords="recruitment", keywords="patient preferences", keywords="remote medicine", keywords="pharmacological treatments", abstract="Background: Patients' participation is crucial to the success of randomized controlled trials (RCTs). However, recruiting and retaining patients in trials remain a challenge. Objective: This study aims to describe patients' preferences for the organization of RCTs (visits on- site or remotely) and evaluate the potential impact of fulfilling preferences on their willingness to participate in a clinical trial. Methods: This was a vignette-based survey. Vignettes were case scenarios of real clinical trials assessing pharmacological treatments. These RCTs evaluated 6 prevalent chronic diseases (ie, osteoporosis, osteoarthritis, asthma, cardiovascular diseases, diabetes, and endometriosis). Each vignette described (1) the RCT and characteristics of the treatment tested (ie, doses, administration routes) and (2) the trial procedures and different options (on-site or remotely) for how the trial was organized for informed consent, follow-up visits, and communication of results when the trial was completed. We recruited 628 participants from ComPaRe (www.compare.aphp.fr), a French e-cohort of patients with chronic diseases. The outcomes were the participants' preferences for the way the trial was organized (on-site or remotely) and their willingness to participate in the trial. Results: Of the 628 participants who answered the vignettes, 491 (78.2\%) were female (median age 55 years), with different chronic diseases ranging from endometriosis in 59 of 491 (12\%) patients to asthma in 133 of 628 (21.2\%) patients. In addition, 38 (6.1\%) participants wanted to provide informed consent and all trial visits on-site, 176 (28\%) wished to participate in the trial entirely remotely, and 414 (65.9\%) wanted to combine remote-based and hospital-based visits. Considering the trial as a whole, when the trial was organized in a way that the patients preferred, the median (Q1-Q3) likelihood of participation in the trial was 90\% (80-100) versus 60\% (30-80) if the trial followed the patients' nonpreferred model. Furthermore, 256 (40.8\%) patients responded to open-ended questions expressing their experience with trial participation and visits to the hospital and providing suggestions for improvement. The patients emphasized the need to personalize the way a trial is organized according to each patient's needs and conditions. Conclusions: There was a significant diversity in the participants' preferences. Most participants preferred hybrid organization involving both on-site and remote visits. Participants were more likely to participate in a trial organized according to their preferences. ", doi="10.2196/29691", url="https://www.jmir.org/2022/2/e29691", url="http://www.ncbi.nlm.nih.gov/pubmed/35103603" } @Article{info:doi/10.2196/31795, author="Oberschmidt, Kira and Gr{\"u}nloh, Christiane and Nijboer, Femke and van Velsen, Lex", title="Best Practices and Lessons Learned for Action Research in eHealth Design and Implementation: Literature Review", journal="J Med Internet Res", year="2022", month="Jan", day="28", volume="24", number="1", pages="e31795", keywords="action research", keywords="eHealth", keywords="best practices", keywords="lessons learned", abstract="Background: Action research (AR) is an established research framework to introduce change in a community following a cyclical approach and involving stakeholders as coresearchers in the process. In recent years, it has also been used for eHealth development. However, little is known about the best practices and lessons learned from using AR for eHealth development. Objective: This literature review aims to provide more knowledge on the best practices and lessons learned from eHealth AR studies. Additionally, an overview of the context in which AR eHealth studies take place is given. Methods: A semisystematic review of 44 papers reporting on 40 different AR projects was conducted to identify the best practices and lessons learned in the research studies while accounting for the particular contextual setting and used AR approach. Results: Recommendations include paying attention to the training of stakeholders' academic skills, as well as the various roles and tasks of action researchers. The studies also highlight the need for constant reflection and accessible dissemination suiting the target group. Conclusions: This literature review identified room for improvements regarding communicating and specifying the particular AR definition and applied approach. ", doi="10.2196/31795", url="https://www.jmir.org/2022/1/e31795", url="http://www.ncbi.nlm.nih.gov/pubmed/35089158" } @Article{info:doi/10.2196/23762, author="Yen, Tso-Jung and Chan, Ta-Chien and Fu, Yang-Chih and Hwang, Jing-Shiang", title="Quality of Life and Multilevel Contact Network Structures Among Healthy Adults in Taiwan: Online Participatory Cohort Study", journal="J Med Internet Res", year="2022", month="Jan", day="28", volume="24", number="1", pages="e23762", keywords="contact diary", keywords="egocentric networks", keywords="social support", keywords="weak ties", keywords="World Health Organization Quality of Life Survey", keywords="quality of life", keywords="networks", keywords="demography", keywords="society", abstract="Background: People's quality of life diverges on their demographics, socioeconomic status, and social connections. Objective: By taking both demographic and socioeconomic features into account, we investigated how quality of life varied on social networks using data from both longitudinal surveys and contact diaries in a year-long (2015-2016) study. Methods: Our 4-wave, repeated measures of quality of life followed the brief version of the World Health Organization Quality of Life scale (WHOQOL-BREF). In our regression analysis, we integrated these survey measures with key time-varying and multilevel network indices based on contact diaries. Results: People's quality of life may decrease if their daily contacts contain high proportions of weak ties. In addition, people tend to perceive a better quality of life when their daily contacts are face-to-face or initiated by others or when they contact someone who is in a good mood or someone with whom they can discuss important life issues. Conclusions: Our findings imply that both functional and structural aspects of the social network play important but different roles in shaping people's quality of life. ", doi="10.2196/23762", url="https://www.jmir.org/2022/1/e23762", url="http://www.ncbi.nlm.nih.gov/pubmed/35089142" } @Article{info:doi/10.2196/27349, author="Passardi, Alessandro and Foca, Flavia and Caffo, Orazio and Tondini, Alberto Carlo and Zambelli, Alberto and Vespignani, Roberto and Bartolini, Giulia and Sullo, Giulio Francesco and Andreis, Daniele and Dianti, Marco and Eccher, Claudio and Piras, Maria Enrico and Forti, Stefano", title="A Remote Monitoring System to Optimize the Home Management of Oral Anticancer Therapies (ONCO-TreC): Prospective Training--Validation Trial", journal="J Med Internet Res", year="2022", month="Jan", day="26", volume="24", number="1", pages="e27349", keywords="adherence", keywords="oral anticancer drug", keywords="mHealth", keywords="ONCO-TreC", keywords="electronic diary", abstract="Background: A platform designed to support the home management of oral anticancer treatments and provide a secure web-based patient--health care professional communication modality, ONCO-TreC, was tested in 3 cancer centers in Italy. Objective: The overall aims of the trial are to customize the platform; assess the system's ability to facilitate the shared management of oral anticancer therapies by patients and health professionals; and evaluate system usability and acceptability by patients, caregivers, and health care professionals. Methods: Patients aged ?18 years who were candidates for oral anticancer treatment as monotherapy with an Eastern Cooperative Oncology Group performance status score of 0 to 1 and a sufficient level of familiarity with mobile devices were eligible. ONCO-TreC consisted of a mobile app for patients and a web-based dashboard for health care professionals. Adherence to treatment (pill count) and toxicities reported by patients through the app were compared with those reported by physicians in medical records. Usability and acceptability were evaluated using questionnaires. Results: A total of 40 patients were enrolled, 38 (95\%) of whom were evaluable for adherence to treatment. The ability of the system to measure adherence to treatment was high, with a concordance of 97.3\% (95\% CI 86.1\%-99.9\%) between the investigator and system pill count. Only 60\% (3/5) of grade 3, 54\% (13/24) of grade 2, and 19\% (7/36) of grade 1 adverse events reported by physicians in the case report forms were also reported in the app directly by patients. In total, 94\% (33/35) of patients had ?1 app launch each week, and the median number of daily accesses per patient was 2. Approximately 71\% (27/38) and 68\% (26/38) of patients used the app for messages and vital sign entering, respectively, at least once during the study period. Conclusions: ONCO-TreC is an important tool for measuring and monitoring adherence to oral anticancer drugs. System usability and acceptability were very high, whereas its reliability in registering toxicity could be improved. Trial Registration: ClinicalTrials.gov NCT02921724; https://www.clinicaltrials.gov/ct2/show/NCT02921724 ", doi="10.2196/27349", url="https://www.jmir.org/2022/1/e27349", url="http://www.ncbi.nlm.nih.gov/pubmed/35080505" } @Article{info:doi/10.2196/29367, author="Rolnick, Joshua and Ward, Robin and Tait, Gordon and Patel, Neha", title="Early Adopters of Apple Health Records at a Large Academic Medical Center: Cross-sectional Survey of Users", journal="J Med Internet Res", year="2022", month="Jan", day="25", volume="24", number="1", pages="e29367", keywords="Apple Health Records", keywords="personal health record", keywords="electronic health record", keywords="patient satisfaction", keywords="early adopters", keywords="cross-sectional survey", abstract="Background: Mobile applications offer a new approach to personal health records, which are internet-based tools for patients to consolidate and manage their health information. The University of Pennsylvania Health System (UPHS) was one of the first health systems to participate in Apple Health Records (AHR), a prominent example of this new generation of personal health records. Objective: This study aimed to characterize early adoption of AHR among UPHS patients and understand user perspectives. Methods: An email-based survey with fixed answer, Likert scale, and open-ended questions was administered to all UPHS patients using AHR in the first 10 months of enrollment. Survey data linked to the UPHS electronic health record system were used to analyze responses. Multivariable logistic regression modeled the association of patient characteristics with user ratings. Content analysis was used to analyze open-ended questions. Results: At the time of the survey, a total of 1458 patients had used AHR at least once. Mean age of AHR users was 47.5 years, 66.3\% (967/1458) were male, 70.9\% (1033/1458) were white, and 80.8\% (1178/1458) had private insurance. Response rate was 26.8\% (391/1458); 46.3\% (180/389) were very satisfied with AHR, and 67.7\% (264/390) described it as very easy to use. The most commonly utilized features were lab results (324/391, 82.9\%), clinical vitals (264/391, 67.5\%), and medications (253/391, 64.7\%). No patient characteristics were associated with reporting high satisfaction or ease of use. The most common reason for using AHR was convenience/ease of use, and 58.2\% (160/275) of users reported allowing no other apps to access their health information, citing privacy as one consideration. Conclusions: Early adopters of AHR were demographically white, male, and privately insured. Convenience was an important facilitator, and users were selective in which apps they allowed to access their health information. ", doi="10.2196/29367", url="https://www.jmir.org/2022/1/e29367", url="http://www.ncbi.nlm.nih.gov/pubmed/35076397" } @Article{info:doi/10.2196/16447, author="Haggstrom, A. David and Carr, Thomas", title="Uses of Personal Health Records for Communication Among Colorectal Cancer Survivors, Caregivers, and Providers: Interview and Observational Study in a Human-Computer Interaction Laboratory", journal="JMIR Hum Factors", year="2022", month="Jan", day="25", volume="9", number="1", pages="e16447", keywords="personal health record", keywords="communication", keywords="cancer survivorship", keywords="colorectal cancer", abstract="Background: Personal health records (PHRs) may be useful for patient self-management and participation in communication with their caregivers and health care providers. As each potential participant's role is different, their perception of the best uses of a PHR may vary. Objective: The perspectives of patients, caregivers, and providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer (CRC) survivors. Methods: We explored group perceptions of a CRC PHR prototype. Scenario-based testing across eight use cases, with semistructured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and health care providers. Providers included oncologists, gastroenterologists, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes. Results: Observations fell into three major themes: the network (who should be granted access to the PHR by the patient), functions (helpful activities the PHR enabled), and implementation (how to adopt the PHR into workflow). Patients wanted physician access to their PHR, as well as family member access, especially when they lived at a distance. All groups noted the added value of linking the PHR to an electronic health record, self-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors. Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information. Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of emotional support. Providers felt the PHR would facilitate patient-physician communication but worried that sharing journal access would make the doctor-patient relationship less professional and had reservations about the time burden of reviewing. Strategies suggested for efficient adoption into workflow included team delegation. Establishment of parameters for patient uses and provider responses was perceived as good standard practice. Conclusions: PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Personal health records should be linked to electronic health records for ease of use. Tailoring access, content, and implementation of the PHR is essential. Technology changes have the potential to change the nature of the patient-physician relationship. Patients and providers should establish shared expectations about the optimal use of the PHR and explore how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care. ", doi="10.2196/16447", url="https://humanfactors.jmir.org/2022/1/e16447", url="http://www.ncbi.nlm.nih.gov/pubmed/35076406" } @Article{info:doi/10.2196/32125, author="Masselot, Camille and Greshake Tzovaras, Bastian and Graham, B. Chris L. and Finnegan, Gary and Jeyaram, Rathin and Vitali, Isabelle and Landrain, Thomas and Santolini, Marc", title="Implementing the Co-Immune Open Innovation Program to Address Vaccination Hesitancy and Access to Vaccines: Retrospective Study", journal="J Particip Med", year="2022", month="Jan", day="21", volume="14", number="1", pages="e32125", keywords="open science", keywords="open innovation", keywords="programmatic research", keywords="collective intelligence", keywords="web based", keywords="immunization", keywords="vaccination access", keywords="vaccine hesitancy", keywords="innovation", keywords="vaccine", keywords="public health", keywords="access", keywords="framework", keywords="participatory", keywords="design", keywords="implementation", abstract="Background: The rise of major complex public health problems, such as vaccination hesitancy and access to vaccination, requires innovative, open, and transdisciplinary approaches. Yet, institutional silos and lack of participation on the part of nonacademic citizens in the design of solutions hamper efforts to meet these challenges. Against this background, new solutions have been explored, with participatory research, citizen science, hackathons, and challenge-based approaches being applied in the context of public health. Objective: Our aim was to develop a program for creating citizen science and open innovation projects that address the contemporary challenges of vaccination in France and around the globe. Methods: We designed and implemented Co-Immune, a program created to tackle the question of vaccination hesitancy and access to vaccination through an online and offline challenge-based open innovation approach. The program was run on the open science platform Just One Giant Lab. Results: Over a 6-month period, the Co-Immune program gathered 234 participants of diverse backgrounds and 13 partners from the public and private sectors. The program comprised 10 events to facilitate the creation of 20 new projects, as well as the continuation of two existing projects, to address the issues of vaccination hesitancy and access, ranging from app development and data mining to analysis and game design. In an open framework, the projects made their data, code, and solutions publicly available. Conclusions: Co-Immune highlights how open innovation approaches and online platforms can help to gather and coordinate noninstitutional communities in a rapid, distributed, and global way toward solving public health issues. Such initiatives can lead to the production and transfer of knowledge, creating novel solutions in the public health sector. The example of Co-Immune contributes to paving the way for organizations and individuals to collaboratively tackle future global challenges. ", doi="10.2196/32125", url="https://jopm.jmir.org/2022/1/e32125", url="http://www.ncbi.nlm.nih.gov/pubmed/35060917" } @Article{info:doi/10.2196/22586, author="Hoang, Victor and Parekh, Amit and Sagers, Kevin and Call, Trevor and Howard, Shain and Hoffman, Jason and Lee, Daniel", title="Patient Utilization of Online Information and its Influence on Orthopedic Surgeon Selection: Cross-sectional Survey of Patient Beliefs and Behaviors", journal="JMIR Form Res", year="2022", month="Jan", day="19", volume="6", number="1", pages="e22586", keywords="orthopedics", keywords="practice management", keywords="physician selection", keywords="internet reviews", keywords="patient decision", keywords="practice", keywords="patient online review", keywords="social media", keywords="physician perception", keywords="patient choice", keywords="health literacy", abstract="Background: Patient attitudes and behavior are critical to understand owing to the increasing role of patient choice. There is a paucity of investigation into the perceived credibility of online information and whether such information impacts how patients choose their surgeons. Objective: The purpose of this study was to explore the attitudes and behavior of patients regarding online information and orthopedic surgeon selection. Secondary purposes included gaining insight into the relative importance of provider selection factors, and their association with patient age and education level. Methods: This was a cross-sectional study involving five multispecialty orthopedic surgery groups. A total of 329 patients who sought treatment by six different orthopedic surgeons were asked to anonymously answer a questionnaire consisting of 25 questions. Four questions regarded demographic information, 10 questions asked patients to rate the importance of specific criteria regarding the selection of their orthopedic surgeon (on a 4-point Likert scale), and 6 questions were designed to determine patient attitude and behaviors related to online information. Results: Patient-reported referral sources included the emergency room (29/329, 8.8\%), friend (42/329, 12.8\%), insurance company (47/329, 14.3\%), internet search/website (28/329, 8.5\%), primary care physician (148/329, 45.0\%), and other (34/329, 10.3\%). Among the 329 patients, 130 (39.5\%) reported that they searched the internet for information before their first visit. There was a trend of increased belief in online information to be accurate and complete in younger age groups (P=.02). There was an increased relative frequency in younger groups to perceive physician rating websites to be unbiased (P=.003), provide sufficient patient satisfaction information (P=.01), and information about physician education and training (P=.03). There was a significant trend for patients that found a surgeon's website to be useful (P<.001), with the relative frequency increased in younger age groups. Conclusions: This study shows that insurance network, physician referrals, appointment availability, and office location are important to patients, whereas advertising and internet reviews by other patients were considered to be not as helpful in choosing an orthopedic surgeon. Future studies may seek to identify obstacles to patients in integrating online resources for decision-making and strategies to improve health-seeking behaviors. ", doi="10.2196/22586", url="https://formative.jmir.org/2022/1/e22586", url="http://www.ncbi.nlm.nih.gov/pubmed/35044319" } @Article{info:doi/10.2196/33118, author="Wu, Xi Vivien and Dong, Yanhong and Tan, Choo Poh and Gan, Peiying and Zhang, Di and Chi, Yuchen and Chao, Ting Felicia Fang and Lu, Jinhua and Teo, Dennis Boon Heng and Tan, Qian Yue", title="Development of a Community-Based e-Health Program for Older Adults With Chronic Diseases: Pilot Pre-Post Study", journal="JMIR Aging", year="2022", month="Jan", day="17", volume="5", number="1", pages="e33118", keywords="eHealth", keywords="self-management", keywords="older adults", keywords="chronic disease", keywords="community care", keywords="elderly", keywords="community", keywords="innovation", keywords="development", keywords="pilot", keywords="evaluation", keywords="health literacy", keywords="empowerment", keywords="feasibility", keywords="engagement", abstract="Background: Chronic diseases may impact older adults' health outcomes, health care costs, and quality of life. Self-management is expected to encourage individuals to make autonomous decisions, adhere to treatment plans, deal with emotional and social consequences, and provide choices for healthy lifestyle. New eHealth solutions significantly increase the health literacy and empower patients in self-management of chronic conditions. Objective: This study aims to develop a Community-Based e-Health Program (CeHP) for older adults with chronic diseases and conduct a pilot evaluation. Methods: A pilot study with a 2-group pre- and posttest repeated measures design was adopted. Community-dwelling older adults with chronic diseases were recruited from senior activity centers in Singapore. A systematic 3-step process of developing CeHP was coupled with a smart-device application. The development of the CeHP intervention consists of theoretical framework, client-centric participatory action research process, content validity assessment, and pilot testing. Self-reported survey questionnaires and health outcomes were measured before and after the CeHP. The instruments used were the Self-care of Chronic Illness Inventory (SCCII), Healthy Aging Instrument (HAI), Short-Form Health Literacy Scale, 12 Items (HLS-SF 12), Patient Empowerment Scale (PES), and Social Support Questionnaire, 6 items. The following health outcomes were measured: Montreal Cognitive Assessment, Symbol Digit Modalities Test, total cholesterol (TC), high-density lipoproteins, low-density lipoproteins/very-low-density lipoproteins (LDL/VLDL), fasting glucose, glycated hemoglobin (HbA1c), and BMI. Results: The CeHP consists of health education, monitoring, and an advisory system for older adults to manage their chronic conditions. It is an 8-week intensive program, including face-to-face and eHealth (Care4Senior App) sessions. Care4Senior App covers health education topics focusing on the management of hypertension, hyperlipidemia, and diabetes, brain health, healthy diet, lifestyle modification, medication adherence, exercise, and mindfulness practice. Content validity assessment indicated that the content of the CeHP is valid, with a content validity index (CVI) ranging 0.86-1 and a scale-CVI of 1. Eight participants in the CeHP group and 4 in the control group completed both baseline and post intervention assessments. Participants in the CeHP group showed improvements in fasting glucose, HbA1c, TC, LDL/VLDL, BMI, SCCII indices (Maintenance, Monitoring, and Management), HAI, and PES scores post intervention, although these changes were not significant. For the participants in the control group, the scores for SCCII (management and confidence) and HLS-SF 12 decreased post intervention. Conclusions: The CeHP is feasible, and it engages and empowers community-dwelling older adults to manage their chronic conditions. The rigorous process of program development and pilot evaluation provided valid evidence to expand the CeHP to a larger-scale implementation to encourage self-management, reduce debilitating complications of poorly controlled chronic diseases, promote healthy longevity and social support, and reduce health care costs. ", doi="10.2196/33118", url="https://aging.jmir.org/2022/1/e33118", url="http://www.ncbi.nlm.nih.gov/pubmed/35037882" } @Article{info:doi/10.2196/31699, author="Buchanan, Francine and Lai, Claudia and Cohen, Eyal and Milo-Manson, Golda and Shachak, Aviv", title="Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis", journal="J Particip Med", year="2022", month="Jan", day="17", volume="14", number="1", pages="e31699", keywords="shared decision-making", keywords="activity theory", keywords="parental decision-making", keywords="parenting", keywords="participatory medicine", keywords="pediatric", keywords="caregiving", abstract="Background: Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs. Objective: The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity. Methods: We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context. Results: Parents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions. Conclusions: Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values. ", doi="10.2196/31699", url="https://jopm.jmir.org/2022/1/e31699", url="http://www.ncbi.nlm.nih.gov/pubmed/35037890" } @Article{info:doi/10.2196/29303, author="Versluis, Anke and Schnoor, Kyma and Chavannes, H. Niels and Talboom-Kamp, PWA Esther", title="Direct Access for Patients to Diagnostic Testing and Results Using eHealth: Systematic Review on eHealth and Diagnostics", journal="J Med Internet Res", year="2022", month="Jan", day="12", volume="24", number="1", pages="e29303", keywords="eHealth", keywords="systematic review", keywords="diagnostic testing", keywords="home-based test", keywords="self-test", abstract="Background: The number of people with chronic diseases and the subsequent pressure on health care is increasing. eHealth technology for diagnostic testing can contribute to more efficient health care and lower workload. Objective: This systematic review examines the available methods for direct web-based access for patients to diagnostic testing and results in the absence of a health care professional in primary care. Methods: We searched the PubMed, Embase, Web of Sciences, Cochrane Library, Emcare, and Academic Search Premier databases in August 2019 and updated in July 2021. The included studies focused on direct patient access to web-based triage leading to diagnostic testing, self-sampling or testing, or web-based communication of test results. A total of 45 studies were included. The quality was assessed using the Mixed Methods Appraisal Tool. Results: Most studies had a quantitative descriptive design and discussed a combination of services. Diagnostic test services mainly focused on sexually transmitted infections. Overall, the use was high for web-based triage (3046/5000, >50\%, who used a triage booked a test), for self-sampling or self-testing kits (83\%), and the result service (85\%). The acceptability of the test services was high, with 81\% preferring home-based testing over clinic-based testing. There was a high rate of follow-up testing or treatment after a positive test (93\%). Conclusions: The results show that direct access to testing and result services had high use rates, was positively evaluated, and led to high rates of follow-up treatment. More research on cost-effectiveness is needed to determine the potential for other diseases. Direct access to diagnostic testing can lower the threshold for testing in users, potentially increase efficiency, and lower the workload in primary care. ", doi="10.2196/29303", url="https://www.jmir.org/2022/1/e29303", url="http://www.ncbi.nlm.nih.gov/pubmed/35019848" } @Article{info:doi/10.2196/27178, author="Jiang, Fei and Liu, Yongmei and Hu, Junhua and Chen, Xiaohong", title="Understanding Health Empowerment From the Perspective of Information Processing: Questionnaire Study", journal="J Med Internet Res", year="2022", month="Jan", day="11", volume="24", number="1", pages="e27178", keywords="online health information", keywords="perceived argument quality", keywords="perceived source credibility", keywords="health literacy", keywords="health empowerment", keywords="information seeking", abstract="Background: Massive, easily accessible online health information empowers users to cope with health problems better. Most patients search for relevant online health information before seeing a doctor to alleviate information asymmetry. However, the mechanism of how online health information affects health empowerment is still unclear. Objective: To study how online health information processing affects health empowerment. Methods: We conducted a cross-sectional questionnaire study that included 343 samples from participants who had searched online health information before the consultation. Respondents' perceptions of online information cues, benefits, health literacy, and health empowerment were assessed. Results: Perceived argument quality and perceived source credibility have significant and positive effects on perceived information benefits, but only perceived argument quality has a significant effect on perceived decision-making benefits. Two types of perceived benefits, in turn, affect health empowerment. The effects of perceived argument quality on perceived informational benefits and perceived decision-making benefits on health empowerment are significantly stronger for the high health literacy group than the low health literacy group (t269=7.156, P<.001; t269=23.240, P<.001). While, the effects of perceived source credibility on perceived informational benefits and perceived informational benefits on health empowerment are significantly weaker for the high health literacy group than the low health literacy group (t269=--10.497, P<.001; t269=--6.344, P<.001). The effect of perceived argument quality on perceived informational benefits shows no significant difference between high and low health literacy groups. Conclusions: ?In the context of online health information, perceived information benefits and perceived decision-making benefits are the antecedents of health empowerment, which in turn will be affected by perceived argument quality and perceived source credibility. Health literacy plays a moderating role in the relationship of some variables. To maximize health empowerment, online health information providers should strengthen information quality and provide differentiated information services based on users' health literacy. ", doi="10.2196/27178", url="https://www.jmir.org/2022/1/e27178", url="http://www.ncbi.nlm.nih.gov/pubmed/35014957" } @Article{info:doi/10.2196/25792, author="Wilczynski, Oph{\'e}lie and Boisbouvier, Anthony and Radoszycki, Lise and Cott{\'e}, Fran{\c{c}}ois-Emery and Gaudin, Anne-Fran{\c{c}}oise and Lemasson, Herv{\'e}", title="Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations", journal="J Med Internet Res", year="2022", month="Jan", day="11", volume="24", number="1", pages="e25792", keywords="cancer", keywords="quality of life", keywords="immunotherapy", keywords="patient community", keywords="patient satisfaction", abstract="Background: New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective: This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods: This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results: Of 82 patients included (mean age: 56.9 years, 95\% CI 54.2-59.6; 46 [56\%] male; 34 [41\%] with lung cancer), 62 (76\%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66\%), oncologists (53/82, 65\%), and hospital nurses (50/82, 61\%). Around half (45/82, 55\%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient's initiative (34/53, 64\%). Discussions occurred primarily during follow-up visits (40/62, 65\%), when adverse events occurred (30/62, 48\%), and at treatment initiation (27/62, 32\%). The most discussed dimensions were symptoms (48/62, 77\%) and physical well-being (43/62, 69\%). With respect to expectations, 54/82 (66\%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77\%) and when treatment was initiated (75/82, 92\%) or changed (68/82, 83\%). All HRQoL dimensions were considered important to discuss. Conclusions: With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed. ", doi="10.2196/25792", url="https://www.jmir.org/2022/1/e25792", url="http://www.ncbi.nlm.nih.gov/pubmed/35014969" } @Article{info:doi/10.2196/35080, author="Miao, Melissa and Power, Emma and Rietdijk, Rachael and Debono, Deborah and Brunner, Melissa and Salomon, Alexander and Mcculloch, Ben and Wright, Rebecca Meg and Welsh, Monica and Tremblay, Bastian and Rixon, Caleb and Williams, Liz and Morrow, Rosemary and Evain, Jean-Christophe and Togher, Leanne", title="Coproducing Knowledge of the Implementation of Complex Digital Health Interventions for Adults with Acquired Brain Injury and their Communication Partners: Protocol for a Mixed Methods Study", journal="JMIR Res Protoc", year="2022", month="Jan", day="10", volume="11", number="1", pages="e35080", keywords="priority setting", keywords="public involvement", keywords="implementation science", keywords="internet interventions", keywords="acquired brain injury", keywords="delivery of health care", keywords="caregivers", keywords="speech-language pathology", keywords="brain injury", keywords="mobile phone", abstract="Background: The Social Brain Toolkit, conceived and developed in partnership with stakeholders, is a novel suite of web-based communication interventions for people with brain injury and their communication partners. To support effective implementation, the developers of the Social Brain Toolkit have collaborated with people with brain injury, communication partners, clinicians, and individuals with digital health implementation experience to coproduce new implementation knowledge. In recognition of the equal value of experiential and academic knowledge, both types of knowledge are included in this study protocol, with input from stakeholder coauthors. Objective: This study aims to collaborate with stakeholders to prioritize theoretically based implementation targets for the Social Brain Toolkit, understand the nature of these priorities, and develop targeted implementation strategies to address these priorities, in order to support the Social Brain Toolkit's implementation. Methods: Theoretically underpinned by the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework of digital health implementation, a maximum variation sample (N=35) of stakeholders coproduced knowledge of the implementation of the Social Brain Toolkit. People with brain injury (n=10), communication partners (n=11), and clinicians (n=5) participated in an initial web-based prioritization survey based on the NASSS framework. Survey completion was facilitated by plain English explanations and accessible captioned videos developed through 3 rounds of piloting. A speech-language pathologist also assisted stakeholders with brain injury to participate in the survey via video teleconference. Participants subsequently elaborated on their identified priorities via 7 web-based focus groups, in which researchers and stakeholders exchanged stakeholder perspectives and research evidence from a concurrent systematic review. Stakeholders were supported to engage in focus groups through the use of visual supports and plain English explanations. Additionally, individuals with experience in digital health implementation (n=9) responded to the prioritization survey questions via individual interview. The results will be deductively analyzed in relation to the NASSS framework in a coauthorship process with people with brain injury, communication partners, and clinicians. Results: Ethical approval was received from the University of Technology Sydney Health and Medical Research Ethics Committee (ETH20-5466) on December 15, 2020. Data were collected from April 13 to November 18, 2021. Data analysis is currently underway, with results expected for publication in mid-2022. Conclusions: In this study, researchers supported individuals with living experience of acquired brain injury, of communicating with or clinically supporting someone post injury, and of digital health implementation, to directly access and leverage the latest implementation research evidence and theory. With this support, stakeholders were able to prioritize implementation research targets, develop targeted implementation solutions, and coauthor and publish new implementation findings. The results will be used to optimize the implementation of 3 real-world, evidence-based interventions and thus improve the outcomes of people with brain injury and their communication partners. International Registered Report Identifier (IRRID): DERR1-10.2196/35080 ", doi="10.2196/35080", url="https://www.researchprotocols.org/2022/1/e35080", url="http://www.ncbi.nlm.nih.gov/pubmed/35006082" } @Article{info:doi/10.2196/27392, author="Zhong, Yang and Tao, Wenjuan and Yang, Yanlin and Wu, Hao and Li, Weimin and Wen, Jin", title="Comparison of User-Oriented Information Services on the Websites of Large Hospitals in China and the United States: Cross-sectional Study", journal="J Med Internet Res", year="2021", month="Dec", day="29", volume="23", number="12", pages="e27392", keywords="hospital websites", keywords="internet", keywords="information services", keywords="marketing mix", keywords="7Ps", keywords="health care information services", keywords="hospital management", keywords="hospitals", keywords="patient services", keywords="eHealth", abstract="Background: Many people use the internet to access health care information to support health care decisions, and hospital websites can be the first point of contact to provide health care information services for consumers. However, little is known about the current information services provided by the websites of large Chinese hospitals. Objective: The aim of this study is to evaluate and compare the information services of the websites of large hospitals in China and the United States. We hope that our findings will benefit hospital managers worldwide in providing service information on the web. Methods: This study adopted a cross-sectional analytical approach to evaluate the websites of large hospitals in China and the United States in 2020. A total of 300 large hospitals were randomly selected, of which half were in China and half were in the United States. Based on the 7Ps marketing mix, we identified 39 items that represent typical hospital website information services, covering the following seven dimensions: product, price, place, propagation, people, process, and physical evidence. Results: Most of the items (34/39, 87\%) related to information services offered by hospital websites were less covered in China than in the United States; however, 5 items (appointments by a third-party platform, mobile payment, hospital value, hospital environment display, and physicians' profiles) had higher coverage in China. The average scores for hospital websites in China and the United States were 13.25 (SD 2.99) points and 23.16 (SD 2.76) points, respectively. Generally, high scores were given to the south areas of China and north areas of the United States. Conclusions: Hospital websites in China lagged behind those in the United States with regard to information services offered. We recommend that hospital managers in China place more emphasis on the people, product, and propagation dimensions of the 7Ps marketing mix in the construction of information services on hospital websites. Through the comparison of the websites of large hospitals in China and the United States, our study findings can provide suggestions for forming standard hospital website construction guidelines worldwide. ", doi="10.2196/27392", url="https://www.jmir.org/2021/12/e27392", url="http://www.ncbi.nlm.nih.gov/pubmed/34964717" } @Article{info:doi/10.2196/25230, author="Forgie, E. Ella M. and Lai, Hollis and Cao, Bo and Stroulia, Eleni and Greenshaw, J. Andrew and Goez, Helly", title="Social Media and the Transformation of the Physician-Patient Relationship: Viewpoint", journal="J Med Internet Res", year="2021", month="Dec", day="24", volume="23", number="12", pages="e25230", keywords="social media", keywords="social determinants of health", keywords="precision medicine", keywords="patient care", doi="10.2196/25230", url="https://www.jmir.org/2021/12/e25230", url="http://www.ncbi.nlm.nih.gov/pubmed/34951596" } @Article{info:doi/10.2196/25743, author="Aguayo, A. Gloria and Goetzinger, Catherine and Scibilia, Renza and Fischer, Aur{\'e}lie and Seuring, Till and Tran, Viet-Thi and Ravaud, Philippe and Bereczky, Tam{\'a}s and Huiart, Laetitia and Fagherazzi, Guy", title="Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study", journal="J Med Internet Res", year="2021", month="Dec", day="23", volume="23", number="12", pages="e25743", keywords="patient and public involvement", keywords="workshops", keywords="surveys", keywords="focus groups", keywords="co-design", keywords="digital cohort study", keywords="digital epidemiology", keywords="social media", keywords="mobile phone", abstract="Background: Patient and public involvement (PPI) in research aims to increase the quality and relevance of research by incorporating the perspective of those ultimately affected by the research. Despite these potential benefits, PPI is rarely included in epidemiology protocols. Objective: The aim of this study is to provide an overview of methods used for PPI and offer practical recommendations for its efficient implementation in epidemiological research. Methods: We conducted a review on PPI methods. We mirrored it with a patient advocate's viewpoint about PPI. We then identified key steps to optimize PPI in epidemiological research based on our review and the viewpoint of the patient advocate, taking into account the identification of barriers to, and facilitators of, PPI. From these, we provided practical recommendations to launch a patient-centered cohort study. We used the implementation of a new digital cohort study as an exemplary use case. Results: We analyzed data from 97 studies, of which 58 (60\%) were performed in the United Kingdom. The most common methods were workshops (47/97, 48\%); surveys (33/97, 34\%); meetings, events, or conferences (28/97, 29\%); focus groups (25/97, 26\%); interviews (23/97, 24\%); consensus techniques (8/97, 8\%); James Lind Alliance consensus technique (7/97, 7\%); social media analysis (6/97, 6\%); and experience-based co-design (3/97, 3\%). The viewpoint of a patient advocate showed a strong interest in participating in research. The most usual PPI modalities were research ideas (60/97, 62\%), co-design (42/97, 43\%), defining priorities (31/97, 32\%), and participation in data analysis (25/97, 26\%). We identified 9 general recommendations and 32 key PPI-related steps that can serve as guidelines to increase the relevance of epidemiological studies. Conclusions: PPI is a project within a project that contributes to improving knowledge and increasing the relevance of research. PPI methods are mainly used for idea generation. On the basis of our review and case study, we recommend that PPI be included at an early stage and throughout the research cycle and that methods be combined for generation of new ideas. For e-cohorts, the use of digital tools is essential to scale up PPI. We encourage investigators to rely on our practical recommendations to extend PPI in future epidemiological studies. ", doi="10.2196/25743", url="https://www.jmir.org/2021/12/e25743", url="http://www.ncbi.nlm.nih.gov/pubmed/34941554" } @Article{info:doi/10.2196/25414, author="Bartlett Ellis, Rebecca and Wright, Julie and Miller, Soederberg Lisa and Jake-Schoffman, Danielle and Hekler, B. Eric and Goldstein, M. Carly and Arigo, Danielle and Nebeker, Camille", title="Lessons Learned: Beta-Testing the Digital Health Checklist for Researchers Prompts a Call to Action by Behavioral Scientists", journal="J Med Internet Res", year="2021", month="Dec", day="22", volume="23", number="12", pages="e25414", keywords="digital health", keywords="mHealth", keywords="research ethics", keywords="institutional review board", keywords="IRB", keywords="behavioral medicine", keywords="wearable sensors", keywords="social media", keywords="bioethics", keywords="data management", keywords="usability", keywords="privacy", keywords="access", keywords="risks and benefits", keywords="mobile phone", doi="10.2196/25414", url="https://www.jmir.org/2021/12/e25414", url="http://www.ncbi.nlm.nih.gov/pubmed/34941548" } @Article{info:doi/10.2196/29027, author="Nagpal, S. Meghan and Barbaric, Antonia and Sherifali, Diana and Morita, P. Plinio and Cafazzo, A. Joseph", title="Patient-Generated Data Analytics of Health Behaviors of People Living With Type 2 Diabetes: Scoping Review", journal="JMIR Diabetes", year="2021", month="Dec", day="20", volume="6", number="4", pages="e29027", keywords="type 2 diabetes", keywords="obesity management", keywords="health behavior", keywords="machine learning", keywords="artificial intelligence", keywords="big data", keywords="data science", keywords="patient-generated health data", keywords="mobile phone", abstract="Background: Complications due to type 2 diabetes (T2D) can be mitigated through proper self-management that can positively change health behaviors. Technological tools are available to help people living with, or at risk of developing, T2D to manage their condition, and such tools provide a large repository of patient-generated health data (PGHD). Analytics can provide insights into the health behaviors of people living with T2D. Objective: The aim of this review is to investigate what can be learned about the health behaviors of those living with, or at risk of developing, T2D through analytics from PGHD. Methods: A scoping review using the Arksey and O'Malley framework was conducted in which a comprehensive search of the literature was conducted by 2 reviewers. In all, 3 electronic databases (PubMed, IEEE Xplore, and ACM Digital Library) were searched using keywords associated with diabetes, behaviors, and analytics. Several rounds of screening using predetermined inclusion and exclusion criteria were conducted, after which studies were selected. Critical examination took place through a descriptive-analytical narrative method, and data extracted from the studies were classified into thematic categories. These categories reflect the findings of this study as per our objective. Results: We identified 43 studies that met the inclusion criteria for this review. Although 70\% (30/43) of the studies examined PGHD independently, 30\% (13/43) combined PGHD with other data sources. Most of these studies used machine learning algorithms to perform their analysis. The themes identified through this review include predicting diabetes or obesity, deriving factors that contribute to diabetes or obesity, obtaining insights from social media or web-based forums, predicting glycemia, improving adherence and outcomes, analyzing sedentary behaviors, deriving behavior patterns, discovering clinical correlations from behaviors, and developing design principles. Conclusions: The increased volume and availability of PGHD have the potential to derive analytical insights into the health behaviors of people living with T2D. From the literature, we determined that analytics can predict outcomes and identify granular behavior patterns from PGHD. This review determined the broad range of insights that can be examined through PGHD, which constitutes a unique source of data for these applications that would not be possible through the use of other data sources. ", doi="10.2196/29027", url="https://diabetes.jmir.org/2021/4/e29027", url="http://www.ncbi.nlm.nih.gov/pubmed/34783668" } @Article{info:doi/10.2196/25498, author="Tossaint-Schoenmakers, Rosian and Kasteleyn, Marise and Goedhart, Annelijn and Versluis, Anke and Talboom-Kamp, Esther", title="The Impact of Patient Characteristics on Their Attitudes Toward an Online Patient Portal for Communicating Laboratory Test Results: Real-World Study", journal="JMIR Form Res", year="2021", month="Dec", day="17", volume="5", number="12", pages="e25498", keywords="patient portal", keywords="eHealth impact questionnaire", keywords="laboratory test results", keywords="self-efficacy", keywords="usability", keywords="age", keywords="gender", keywords="chronic disease", keywords="education", keywords="patient characteristics", abstract="Background: Patient portals are promising tools to increase patient involvement and allow them to manage their health. To optimally facilitate patients, laboratory test results should be explained in easy language. Patient characteristics affect the usage of portals and the user satisfaction. However, limited research is available, specified for online communicating laboratory test results, on whether portal use and acceptance differ between groups. Objective: The aim of this study was to assess the effect of patient characteristics (gender, age, education, and chronic disease) on the self-efficacy and perceived usability of an online patient portal that communicates diagnostic test results. Methods: We used the online-administered eHealth impact questionnaire (eHIQ) to explore patients' attitudes toward the portal. Patients visiting the portal were asked to complete the questionnaire and to answer questions regarding gender, age, education, and chronic disease. The subscale ``information and presentation'' of the eHIQ assessed the usability of the patient portal and the subscale ``motivation and confidence to act'' assessed self-efficacy to determine whether patients were motivated to act on the presented information. Age, gender, education, and chronic disease were the determinants to analyze the effect on usability and self-efficacy. Descriptive analyses were performed to explore patient characteristics, usability, and self-efficacy. Univariable and multivariable regression analyses were performed with age, gender, education, and chronic disease as determinants, and usability and self-efficacy as outcomes. Results: The questionnaire was completed by 748 respondents, of which 428 (57.2\%) were female, 423 (56.6\%) were highly educated, and 509 (68\%) had no chronic disease. The mean age was 58.5 years (SD 16.4). Higher age, high education, and asthma or chronic obstructive pulmonary disease were significant determinants for decreased usability; respectively, b=-.094, 95\% CI -1147 to 0.042 (P<.001); b=-2.512, 95\% CI -4.791 to -0.232 (P=.03); and b=-3.630, 95\% CI -6.545 to -0.715 (P=.02). High education was also a significant determinant for a lower self-efficacy (b=-3.521, 95\% CI -6.469 to -0.572; P=.02). Other determinants were not significant. Conclusions: This study showed that the higher-educated users of a patient portal scored lower on usability and self-efficacy. Usability was also lower for older people and for patients with asthma or chronic obstructive pulmonary disease. The results portal is not tailored for different groups. Further research should investigate which factors from a patient's perspective are essential to tailor the portal for different groups and how a result portal can be optimally integrated within the daily practice of a doctor. ", doi="10.2196/25498", url="https://formative.jmir.org/2021/12/e25498", url="http://www.ncbi.nlm.nih.gov/pubmed/34927593" } @Article{info:doi/10.2196/30291, author="Ankersen, Vedel Dorit and Weimers, Petra and Bennedsen, Mette and Haaber, Birgitte Anne and Fjordside, Lund Eva and Beber, Emanuel Moritz and Lieven, Christian and Saboori, Sanaz and Vad, Nicolai and Rannem, Terje and Marker, Dorte and Paridaens, Kristine and Frahm, Suzanne and Jensen, Lisbeth and Rosager Hansen, Malte and Burisch, Johan and Munkholm, Pia", title="Long-Term Effects of a Web-Based Low-FODMAP Diet Versus Probiotic Treatment for Irritable Bowel Syndrome, Including Shotgun Analyses of Microbiota: Randomized, Double-Crossover Clinical Trial", journal="J Med Internet Res", year="2021", month="Dec", day="14", volume="23", number="12", pages="e30291", keywords="irritable bowel syndrome", keywords="web-based low-FODMAP diet", keywords="probiotics", keywords="randomized trial", keywords="web-based", keywords="IBS", keywords="symptom management", keywords="treatment outcomes", keywords="outcomes", keywords="treatment", keywords="microbiota", keywords="microbiome", keywords="gastroenterology", keywords="mobile app", keywords="mHealth", keywords="eHealth", abstract="Background: The long-term management of irritable bowel syndrome (IBS) poses many challenges. In short-term studies, eHealth interventions have been demonstrated to be safe and practical for at-home monitoring of the effects of probiotic treatments and a diet low in fermentable oligosaccharides, disaccharides, monosaccharides, and polyols (FODMAPs). IBS has been linked to alterations in the microbiota. Objective: The aim of this study was to determine whether a web-based low-FODMAP diet (LFD) intervention and probiotic treatment were equally good at reducing IBS symptoms, and whether the response to treatments could be explained by patients' microbiota. Methods: Adult IBS patients were enrolled in an open-label, randomized crossover trial (for nonresponders) with 1 year of follow-up using the web application IBS Constant Care (IBS CC). Patients were recruited from the outpatient clinic at the Department of Gastroenterology, North Zealand University Hospital, Denmark. Patients received either VSL\#3 for 4 weeks (2 {\texttimes} 450 billion colony-forming units per day) or were placed on an LFD for 4 weeks. Patients responding to the LFD were reintroduced to foods high in FODMAPs, and probiotic responders received treatments whenever they experienced a flare-up of symptoms. Treatment response and symptom flare-ups were defined as a reduction or increase, respectively, of at least 50 points on the IBS Severity Scoring System (IBS-SSS). Web-based ward rounds were performed daily by the study investigator. Fecal microbiota were analyzed by shotgun metagenomic sequencing (at least 10 million 2 {\texttimes} 100 bp paired-end sequencing reads per sample). Results: A total of 34 IBS patients without comorbidities and 6 healthy controls were enrolled in the study. Taken from participating subjects, 180 fecal samples were analyzed for their microbiota composition. Out of 21 IBS patients, 12 (57\%) responded to the LFD and 8 (38\%) completed the reintroduction of FODMAPs. Out of 21 patients, 13 (62\%) responded to their first treatment of VSL\#3 and 7 (33\%) responded to multiple VSL\#3 treatments. A median of 3 (IQR 2.25-3.75) probiotic treatments were needed for sustained symptom control. LFD responders were reintroduced to a median of 14.50 (IQR 7.25-21.75) high-FODMAP items. No significant difference in the median reduction of IBS-SSS for LFD versus probiotic responders was observed, where for LFD it was --126.50 (IQR --196.75 to --76.75) and for VSL\#3 it was --130.00 (IQR --211.00 to --70.50; P>.99). Responses to either of the two treatments were not able to be predicted using patients' microbiota. Conclusions: The web-based LFD intervention and probiotic treatment were equally efficacious in managing IBS symptoms. The response to treatments could not be explained by the composition of the microbiota. The IBS CC web application was shown to be practical, safe, and useful for clinical decision making in the long-term management of IBS. Although this study was underpowered, findings from this study warrant further research in a larger sample of patients with IBS to confirm these long-term outcomes. Trial Registration: ClinicalTrials.gov NCT03586622; https://clinicaltrials.gov/ct2/show/NCT03586622 ", doi="10.2196/30291", url="https://www.jmir.org/2021/12/e30291", url="http://www.ncbi.nlm.nih.gov/pubmed/34904950" } @Article{info:doi/10.2196/34170, author="Schwarz, Julian and B{\"a}rk{\aa}s, Annika and Blease, Charlotte and Collins, Lorna and H{\"a}gglund, Maria and Markham, Sarah and Hochwarter, Stefan", title="Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review", journal="JMIR Ment Health", year="2021", month="Dec", day="14", volume="8", number="12", pages="e34170", keywords="electronic health record", keywords="open notes", keywords="user involvement", keywords="patient advocacy", keywords="patient portal", keywords="patient rights", keywords="collaborative health care", keywords="participation", keywords="coproduction", keywords="system transformation", keywords="health care reform", abstract="Background: Electronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)---often referred to as open notes---have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration. Objective: This scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps. Methods: A systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings. Results: Of the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members' mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes. Conclusions: PAEHRs in MHC may strengthen user involvement, patients' autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention. ", doi="10.2196/34170", url="https://mental.jmir.org/2021/12/e34170", url="http://www.ncbi.nlm.nih.gov/pubmed/34904956" } @Article{info:doi/10.2196/29190, author="Rising, J. Camella and Gaysynsky, Anna and Blake, D. Kelly and Jensen, E. Roxanne and Oh, April", title="Willingness to Share Data From Wearable Health and Activity Trackers: Analysis of the 2019 Health Information National Trends Survey Data", journal="JMIR Mhealth Uhealth", year="2021", month="Dec", day="13", volume="9", number="12", pages="e29190", keywords="mobile health", keywords="population health", keywords="health communication", keywords="survey methodology", keywords="mobile apps", keywords="devices", keywords="online social networking", keywords="mobile phone", abstract="Background: Sharing data from wearable health and activity trackers (wearables) with others may improve the health and behavioral outcomes of wearable users by generating social support and improving their ability to manage their health. Investigating individual factors that influence US adults' willingness to share wearable data with different types of individuals may provide insights about the population subgroups that are most or least likely to benefit from wearable interventions. Specifically, it is necessary to identify digital health behaviors potentially associated with willingness to share wearable data given that the use of and engagement with various technologies may broadly influence web-based health information--sharing behaviors. Objective: This study aims to identify sociodemographic, health, and digital health behavior correlates of US adults' willingness to share wearable data with health care providers and family or friends. Methods: Data for the analytic sample (N=1300) were obtained from the 2019 Health Information National Trends Survey of the National Cancer Institute. Digital health behavior measures included frequency of wearable device use, use of smartphones or tablets to help communicate with providers, use of social networking sites to share health information, and participation in a web-based health community. Multivariable logistic regression analysis of weighted data examined the associations between digital health behaviors and willingness to share wearable device data, controlling for sociodemographics and health-related characteristics. Results: Most US adults reported willingness to share wearable data with providers (81.86\%) and with family or friends (69.51\%). Those who reported higher health self-efficacy (odds ratio [OR] 1.97, 95\% CI 1.11-3.51), higher level of trust in providers as a source of health information (OR 1.98, 95\% CI 1.12-3.49), and higher level of physical activity (OR 2.00, 95\% CI 1.21-3.31) had greater odds of willingness to share data with providers. In addition, those with a higher frequency of wearable use (OR 2.15, 95\% CI 1.35-3.43) and those who reported use of smartphones or tablets to help communicate with providers (OR 1.99, 95\% CI 1.09-3.63) had greater odds of willingness to share data with providers. Only higher level of physical activity was associated with greater odds of willingness to share wearable data with family or friends (OR 1.70, 95\% CI 1.02-2.84). Sociodemographic factors were not significantly associated with willingness to share wearable data. Conclusions: The findings of this study suggest that, among US adult wearable users, behavior-related factors, rather than sociodemographic characteristics, are key drivers of willingness to share health information obtained from wearables with others. Moreover, behavioral correlates of willingness to share wearable data are unique to the type of recipient (ie, providers vs family or friends). Future studies could use these findings to inform the development of interventions that aim to improve the use of patient-generated data from wearable devices in health care settings. ", doi="10.2196/29190", url="https://mhealth.jmir.org/2021/12/e29190", url="http://www.ncbi.nlm.nih.gov/pubmed/34898448" } @Article{info:doi/10.2196/25963, author="Link, Elena and Baumann, Eva and Klimmt, Christoph", title="Explaining Online Information Seeking Behaviors in People With Different Health Statuses: German Representative Cross-sectional Survey", journal="J Med Internet Res", year="2021", month="Dec", day="10", volume="23", number="12", pages="e25963", keywords="online health information seeking behavior", keywords="Planned Risk Information Seeking Model", keywords="health status", keywords="theory building", keywords="personal survey", abstract="Background: Worldwide, the internet is an increasingly important channel for health information. Many theories have been applied in research on online health information seeking behaviors (HISBs), with each model integrating a different set of predictors; thus, a common understanding of the predictors of (online) HISB is still missing. Another shortcoming of the theories explaining (online) HISB is that most existing models, so far, focus on very specific health contexts such as cancer. Therefore, the assumptions of the Planned Risk Information Seeking Model (PRISM) as the latest integrative model are applied to study online HISB, because this model identifies the general cognitive and sociopsychological factors that explain health information seeking intention. We shift away from single diseases and explore cross-thematic patterns of online HISB intention and compare predictors concerning different health statuses as it can be assumed that groups of people perceiving themselves as ill or healthy will differ concerning their drivers of online HISB. Considering the specifics of online HISB and variation in individual context factors is key for the development of generalizable theories. Objective: The objective of our study was to contribute to the development of the concept of online HISB in 2 areas. First, this study aimed to explore individual-level predictors of individuals' online HISB intention by applying the postulates of PRISM. Second, we compared relevant predictors of online HISB in groups of people with different health statuses to identify cross-thematic central patterns of online HISB. Methods: Data from a representative sample of German internet users (n=822) served to explain online HISB intentions and influencing patterns in different groups of people. The applicability of the PRISM to online HISB intention was tested by structural equation modeling and multigroup comparison. Results: Our results revealed PRISM to be an effective framework for explaining online HISB intention. For online HISB, attitudes toward seeking health information online provided the most important explanatory power followed by risk perceptions and affective risk responses. The multigroup comparison revealed differences both regarding the explanatory power of the model and the relevance of predictors of online HISB. The online HISB intention could be better explained for people facing a health threat, suggesting that the predictors adopted from PRISM were more suitable to explain a problem-driven type of information-seeking behavior. Conclusions: Our findings indicate that attitudes toward seeking health information online and risk perceptions are of central importance for online HISB across different health-conditional contexts. Predictors such as self-efficacy and perceived knowledge insufficiency play a context-dependent role---they are more influential when individuals are facing health threats and the search for health information is of higher personal relevance and urgency. These findings can be understood as the first step to develop a generalized theory of online HISB. ", doi="10.2196/25963", url="https://www.jmir.org/2021/12/e25963", url="http://www.ncbi.nlm.nih.gov/pubmed/34890348" } @Article{info:doi/10.2196/26017, author="Zhang, Zhan and Kmoth, Lukas and Luo, Xiao and He, Zhe", title="User-Centered System Design for Communicating Clinical Laboratory Test Results: Design and Evaluation Study", journal="JMIR Hum Factors", year="2021", month="Nov", day="25", volume="8", number="4", pages="e26017", keywords="clinical laboratory results", keywords="patient-centered care", keywords="patient portal", keywords="health communication", abstract="Background: Personal clinical data, such as laboratory test results, are increasingly being made available to patients via patient portals. However, laboratory test results are presented in a way that is difficult for patients to interpret and use. Furthermore, the indications of laboratory test results may vary among patients with different characteristics and from different medical contexts. To date, little is known about how to design patient-centered technology to facilitate the interpretation of laboratory test results. Objective: The aim of this study is to explore design considerations for supporting patient-centered communication and comprehension of laboratory test results, as well as discussions between patients and health care providers. Methods: We conducted a user-centered, multicomponent design research consisting of user studies, an iterative prototype design, and pilot user evaluations, to explore design concepts and considerations that are useful for supporting patients in not only viewing but also interpreting and acting upon laboratory test results. Results: The user study results informed the iterative design of a system prototype, which had several interactive features: using graphical representations and clear takeaway messages to convey the concerning nature of the results; enabling users to annotate laboratory test reports; clarifying medical jargon using nontechnical verbiage and allowing users to interact with the medical terms (eg, saving, favoriting, or sorting); and providing pertinent and reliable information to help patients comprehend test results within their medical context. The results of a pilot user evaluation with 8 patients showed that the new patient-facing system was perceived as useful in not only presenting laboratory test results to patients in a meaningful way but also facilitating in situ patient-provider interactions. Conclusions: We draw on our findings to discuss design implications for supporting patient-centered communication of laboratory test results and how to make technology support informative, trustworthy, and empathetic. ", doi="10.2196/26017", url="https://humanfactors.jmir.org/2021/4/e26017", url="http://www.ncbi.nlm.nih.gov/pubmed/34842529" } @Article{info:doi/10.2196/32609, author="Santos, D. Amanda and Caine, Vera and Robson, J. Paula and Watson, Linda and Easaw, C. Jacob and Petrovskaya, Olga", title="Oncology Patients' Experiences With Novel Electronic Patient Portals to Support Care and Treatment: Qualitative Study With Early Users and Nonusers of Portals in Alberta, Canada", journal="JMIR Cancer", year="2021", month="Nov", day="24", volume="7", number="4", pages="e32609", keywords="patient portal", keywords="MyChart", keywords="health information and communication technology", keywords="eHealth", keywords="personal health information", keywords="oncology", keywords="cancer care", keywords="Canada", keywords="qualitative", keywords="context of technology implementation", abstract="Background: With the current proliferation of clinical information technologies internationally, patient portals are increasingly being adopted in health care. Research, conducted mostly in the United States, shows that oncology patients have a keen interest in portals to gain access to and track comprehensive personal health information. In Canada, patient portals are relatively new and research into their use and effects is currently emerging. There is a need to understand oncology patients' experiences of using eHealth tools and to ground these experiences in local sociopolitical contexts of technology implementation, while seeking to devise strategies to enhance portal benefits. Objective: The purpose of this study was to explore the experiences of oncology patients and their family caregivers when using electronic patient portals to support their health care needs. We focused on how Alberta's unique, 2-portal context shapes experiences of early portal adopters and nonadopters, in anticipation of a province-wide rollout of a clinical information system in oncology facilities. Methods: This qualitative descriptive study employed individual semistructured interviews and demographic surveys with 11 participants. Interviews were audio-recorded and transcribed verbatim. Data were analyzed thematically. The study was approved by the University of Alberta Human Research Ethics Board. Results: Participants currently living with nonactive cancer discussed an online patient portal as one among many tools (including the internet, phone, videoconferencing, print-out reports) available to make sense of their diagnosis and treatment, maintain connections with health care providers, and engage with information. In the Fall of 2020, most participants had access to 1 of 2 of Alberta's patient portals and identified ways in which this portal was supportive (or not) of their ongoing health care needs. Four major themes, reflecting the participants' broader concerns within which the portal use was occurring, were generated from the data: (1) experiencing doubt and the desire for transparency; (2) seeking to become an informed and active member of the health care team; (3) encountering complexity; and (4) emphasizing the importance of the patient--provider relationship. Conclusions: Although people diagnosed with cancer and their family caregivers considered an online patient portal as beneficial, they identified several areas that limit how portals support their oncology care. Providers of health care portals are invited to recognize these limitations and work toward addressing them. ", doi="10.2196/32609", url="https://cancer.jmir.org/2021/4/e32609", url="http://www.ncbi.nlm.nih.gov/pubmed/34822338" } @Article{info:doi/10.2196/24319, author="Lamontagne, Marie-Eve and Gagnon, Marie-Pierre and Perreault, Kadija and Gauthier, V{\'e}ronique", title="Evaluating the Acceptability, Feasibility, and Outcomes of Two Methods Involving Patients With Disability in Developing Clinical Guidelines: Crossover Pilot Study", journal="J Particip Med", year="2021", month="Nov", day="23", volume="13", number="3", pages="e24319", keywords="clinical practice guidelines", keywords="patient participation", keywords="traumatic brain injuries", keywords="clinical practice", keywords="patient", keywords="participation", keywords="brain injury", keywords="traumatic", abstract="Background: Engaging patients and the public in clinical practice guideline (CPG) development is believed to contribute significantly to guideline quality, but the advantages of the various co-design strategies have not been empirically compared, making it difficult to choose one strategy over another. Objective: This pilot study aims to document the acceptability, feasibility, and outcomes of 2 methods of involving patients in outlining CPG. Methods: A single-blind crossover pragmatic study was performed with patients with traumatic brain injury. The patients experimented with 2 alternative methods of producing clinical practice recommendations (ie, a discussion group and a wiki). The participants rated the acceptability of the 2 methods, and feasibility was assessed using indicators, such as the number of participants who completed the 2 methods and the number of support interventions required. Experts, blinded to the method, independently rated the participants' outcome recommendations for clarity, accuracy, appropriateness, and usefulness. Results: We recruited 20 participants, and 16 completed the study. The acceptability of the 2 methods showed little variation, with qualitative comments expressing a slight preference for the social nature of focus groups. Thus, both methods of involving patients in CPG development appeared feasible, and the experts' opinions of the adapted recommendations were both positive, although the recommendations produced through focus groups were deemed more relevant to support clinical practice. Conclusions: Our results confirm the acceptability and feasibility of focus groups and wikis to allow patients with traumatic brain injury to participate in clinical practice guideline production. This study contributes to the scientific literature by suggesting that the 2 methods were acceptable, feasible, and produced positive outcomes. Trial Registration: ClinicalTrials.gov NCT02023138; https://clinicaltrials.gov/ct2/show/NCT02023138 ", doi="10.2196/24319", url="https://jopm.jmir.org/2021/3/e24319/", url="http://www.ncbi.nlm.nih.gov/pubmed/34812733" } @Article{info:doi/10.2196/30062, author="Rajamani, Geetanjali and Rodriguez Espinosa, Patricia and Rosas, G. Lisa", title="Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: Scoping Review", journal="J Particip Med", year="2021", month="Nov", day="19", volume="13", number="3", pages="e30062", keywords="community engagement", keywords="stakeholder involvement", keywords="underserved communities", keywords="health informatics", keywords="health information technology", keywords="health inequities", keywords="health-related research", abstract="Background: The exponential growth of health information technology has the potential to facilitate community engagement in research. However, little is known about the use of health information technology in community-engaged research, such as which types of health information technology are used, which populations are engaged, and what are the research outcomes. Objective: The objectives of this scoping review were to examine studies that used health information technology for community engagement and to assess (1) the types of populations, (2) community engagement strategies, (3) types of health information technology tools, and (4) outcomes of interest. Methods: We searched PubMed and PCORI Literature Explorer using terms related to health information technology, health informatics, community engagement, and stakeholder involvement. This search process yielded 967 papers for screening. After inclusion and exclusion criteria were applied, a total of 37 papers were analyzed for key themes and for approaches relevant to health information technology and community engagement research. Results: This analysis revealed that the communities engaged were generally underrepresented populations in health-related research, including racial or ethnic minority communities such as Black/African American, American Indian/Alaska Native, Latino ethnicity, and communities from low socioeconomic backgrounds. The studies focused on various age groups, ranging from preschoolers to older adults. The studies were also geographically spread across the United States and the world. Community engagement strategies included collaborative development of health information technology tools and partnerships to promote use (encompassing collaborative development, use of community advisory boards, and focus groups for eliciting information needs) and use of health information technology to engage communities in research (eg, through citizen science). The types of technology varied across studies, with mobile or tablet-based apps being the most common platform. Outcomes measured included eliciting user needs and requirements, assessing health information technology tools and prototypes with participants, measuring knowledge, and advocating for community change. Conclusions: This study illustrates the current landscape at the intersection of health information technology tools and community-engaged research approaches. It highlights studies in which various community-engaged research approaches were used to design culturally centered health information technology tools, to promote health information technology uptake, or for engagement in health research and advocacy. Our findings can serve as a platform for generating future research upon which to expand the scope of health information technology tools and their use for meaningful stakeholder engagement. Studies that incorporate community context and needs have a greater chance of cocreating culturally centered health information technology tools and better knowledge to promote action and improve health outcomes. ", doi="10.2196/30062", url="https://jopm.jmir.org/2021/3/e30062", url="http://www.ncbi.nlm.nih.gov/pubmed/34797214" } @Article{info:doi/10.2196/27835, author="Schenkel, K. Sandra and Jungmann, M. Stefanie and Gropalis, Maria and Witth{\"o}ft, Michael", title="Conceptualizations of Cyberchondria and Relations to the Anxiety Spectrum: Systematic Review and Meta-analysis", journal="J Med Internet Res", year="2021", month="Nov", day="18", volume="23", number="11", pages="e27835", keywords="cyberchondria", keywords="health anxiety", keywords="online health information seeking", keywords="anxiety", keywords="systematic review", keywords="meta-analysis", abstract="Background: Cyberchondria describes the detrimental effects of health-related internet use. Current conceptualizations agree that cyberchondria is associated with anxiety-related pathologies and may best be conceptualized as a safety behavior; however, little is known about its exact underlying mechanisms. Objective: This systematic review and meta-analysis aims to give an overview of the conceptualizations of cyberchondria and its relation to anxiety-related pathologies, quantify the strength of association to health anxiety by using meta-analyses, highlight gaps in the literature, and outline a hypothetical integrative cognitive-behavioral model of cyberchondria based on the available empirical evidence. Methods: A systematic literature search was conducted using PubMed, Web of Science, and PsycINFO electronic databases. A total of 25 studies were included for qualitative synthesis and 7 studies, comprising 3069 individuals, were included for quantitative synthesis. The meta-analysis revealed a strong association of cyberchondria (r=0.63) and its subfacets (r=0.24-0.66) with health anxiety. Results: The results indicate that cyberchondria is a distinct construct related to health anxiety, obsessive-compulsive symptoms, intolerance of uncertainty, and anxiety sensitivity. Further studies should distinguish between state and trait markers of anxiety-related pathologies and use experimental and naturalistic longitudinal designs to differentiate among risk factors, triggers, and consequences related to cyberchondria. Conclusions: Health-related internet use in the context of health anxiety is best conceptualized as health-related safety behavior maintained through intermittent reinforcement. Here, we present a corresponding integrative cognitive-behavioral model. ", doi="10.2196/27835", url="https://www.jmir.org/2021/11/e27835", url="http://www.ncbi.nlm.nih.gov/pubmed/34792473" } @Article{info:doi/10.2196/28780, author="Biau, Sandrine and Bonnet, Emmanuel and Dagenais, Christian and De Allegri, Manuela and Traor{\'e}, Zoumana and Ouedraogo, Wahabo Abdoul and Sow, Abdramane and Dubois-Nguyen, Karina and Ridde, Val{\'e}ry", title="Using Information and Communication Technologies to Engage Citizens in Health System Governance in Burkina Faso: Protocol for Action Research", journal="JMIR Res Protoc", year="2021", month="Nov", day="16", volume="10", number="11", pages="e28780", keywords="health governance", keywords="ICTs", keywords="citizen participation", keywords="responsiveness", keywords="social responsibility", keywords="Burkina Faso", keywords="technology platforms", keywords="democracy", keywords="health systems", keywords="equity", keywords="West Africa", keywords="public health", keywords="participation", keywords="health policy", abstract="Background: Health systems are complex systems involving a vast range of actors. In West Africa, they are often not accessible or responsive. Burkina Faso has widely expressed, in its public health policy, the need to improve both access to quality care and health system responsiveness. There is also a strong wish to give more voice to citizens. To support Burkinab{\`e} institutions in achieving these goals, we have developed an action research (AR) protocol. Objective: This paper presents the protocol that will address citizens' participation in health policies and their empowerment through the expression of opinions, for accountability, as well as the strengthening of the health system using information and communication technologies (ICTs). Methods: Our approach will consist of (1) enabling people to express their opinions on the health system by means of a toll-free (TF) service coupled with an interactive voice server (IVS); (2) building an information base with anonymous and reliable data; and (3) conducting information awareness-raising activities, including knowledge transfer (KT) and advocacy, social integration activities, development of OpenData platforms, and the capitalization and media coverage of governance issues. For this purpose, the AR project will be implemented in Burkina Faso. The design uses a concurrent mixed-methods approach. This AR project will evaluate the acceptability, process, effectiveness, and economic costs of the device's implementation. We will also analyze the potential for the data collected by the device to be used to improve practices. Results: Data collection is in progress; the TF number was officially launched on July 1, 2020, and data collection is planned to continue throughout 2021. By using mixed methods, our AR will be approached from a variety of perspectives. Mixed methods will support us in combining the partial insights into sophisticated realities from qualitative inquiries with the data analyses produced by quantitative research. Conclusions: This AR is expected to add knowledge on how to increase the empowerment of the population, especially the most vulnerable, to participate in democratic processes and enjoy and exercise their human rights. This protocol recommends implementing a low-cost, contextually adapted technology, associated with an evidence-based approach and carried out on a significant scale. The originality of this approach lies in the fact that it introduces a real AR dimension with local communities and nongovernmental organizations (NGOs), combined with an integrated strategy of KT and application throughout the project for all stakeholders. International Registered Report Identifier (IRRID): DERR1-10.2196/28780 ", doi="10.2196/28780", url="https://www.researchprotocols.org/2021/11/e28780", url="http://www.ncbi.nlm.nih.gov/pubmed/34783671" } @Article{info:doi/10.2196/23481, author="Neves, Luisa Ana and Smalley, R. Katelyn and Freise, Lisa and Harrison, Paul and Darzi, Ara and Mayer, K. Erik", title="Determinants of Use of the Care Information Exchange Portal: Cross-sectional Study", journal="J Med Internet Res", year="2021", month="Nov", day="11", volume="23", number="11", pages="e23481", keywords="patient portals", keywords="electronic health records", keywords="patient participation", abstract="Background: Sharing electronic health records with patients has been shown to improve patient safety and quality of care. Patient portals represent a convenient tool to enhance patient access to their own health care data. However, the success of portals will only be possible through sustained adoption by its end users: the patients. A better understanding of the characteristics of users and nonusers is critical for understanding which groups remain excluded from using such tools. Objective: This study aims to identify the determinants of the use of the Care Information Exchange, a shared patient portal program in the United Kingdom. Methods: A cross-sectional study was conducted using a web-based questionnaire. Information collected included age, gender, ethnicity, educational level, health status, postcode, and digital literacy. Registered individuals were defined as having had an account created in the portal, independent of their actual use of the platform; users were defined as having ever used the portal. Multivariate logistic regression was used to model the probability of being a user. Statistical analysis was performed in R and Tableau was used to create maps of the proportion of Care Information Exchange users by postcode area. Results: A total of 1083 participants replied to the survey (186\% of the estimated minimum target sample). The proportion of users was 61.58\% (667/1083). Among these, most (385/667, 57.7\%) used the portal at least once a month. To characterize the system's users and nonusers, we performed a subanalysis of the sample, including only participants who had provided at least information regarding gender and age. The subanalysis included 650 individuals (389/650, 59.8\% women; 551/650, 84.8\% >40 years). Most participants were White (498/650, 76.6\%) and resided in London (420/650, 64.6\%). Individuals with a higher educational degree (undergraduate and professional, or postgraduate and higher) had higher odds of being a portal user (adjusted odds ratio [OR] 1.58, 95\% CI 1.04-2.39 and OR 2.38, 95\% CI 1.42-4.02, respectively) compared with those with a secondary degree or below. Higher digital literacy scores (?30) were associated with higher odds of being a user (adjusted OR 2.96, 95\% CI 2.02-4.35). Those with a good overall health status had lower odds of being a user (adjusted OR 0.58, 95\% CI 0.37-0.91). Conclusions: This work adds to the growing body of evidence highlighting the importance of educational aspects (educational level and digital literacy) in the adoption of patient portals. Further research should not only describe but also systematically address these inequalities through patient-centered interventions aimed at reducing the digital divide. Health care providers and policy makers must partner in investing and delivering strategic programs that improve access to technology and digital literacy in an effort to improve digital inclusion and reduce inequities in the delivery of care. ", doi="10.2196/23481", url="https://www.jmir.org/2021/11/e23481", url="http://www.ncbi.nlm.nih.gov/pubmed/34762063" } @Article{info:doi/10.2196/28915, author="Yu, Hongfan and Yu, Qingsong and Nie, Yuxian and Xu, Wei and Pu, Yang and Dai, Wei and Wei, Xing and Shi, Qiuling", title="Data Quality of Longitudinally Collected Patient-Reported Outcomes After Thoracic Surgery: Comparison of Paper- and Web-Based Assessments", journal="J Med Internet Res", year="2021", month="Nov", day="9", volume="23", number="11", pages="e28915", keywords="patient-reported outcome (PRO)", keywords="data quality", keywords="MDASI-LC", keywords="postoperative care", keywords="symptoms", abstract="Background: High-frequency patient-reported outcome (PRO) assessments are used to measure patients' symptoms after surgery for surgical research; however, the quality of those longitudinal PRO data has seldom been discussed. Objective: The aim of this study was to determine data quality-influencing factors and to profile error trajectories of data longitudinally collected via paper-and-pencil (P\&P) or web-based assessment (electronic PRO [ePRO]) after thoracic surgery. Methods: We extracted longitudinal PRO data with 678 patients scheduled for lung surgery from an observational study (n=512) and a randomized clinical trial (n=166) on the evaluation of different perioperative care strategies. PROs were assessed by the MD Anderson Symptom Inventory Lung Cancer Module and single-item Quality of Life Scale before surgery and then daily after surgery until discharge or up to 14 days of hospitalization. Patient compliance and data error were identified and compared between P\&P and ePRO. Generalized estimating equations model and 2-piecewise model were used to describe trajectories of error incidence over time and to identify the risk factors. Results: Among 678 patients, 629 with at least 2 PRO assessments, 440 completed 3347 P\&P assessments and 189 completed 1291 ePRO assessments. In total, 49.4\% of patients had at least one error, including (1) missing items (64.69\%, 1070/1654), (2) modifications without signatures (27.99\%, 463/1654), (3) selection of multiple options (3.02\%, 50/1654), (4) missing patient signatures (2.54\%, 42/1654), (5) missing researcher signatures (1.45\%, 24/1654), and (6) missing completion dates (0.30\%, 5/1654). Patients who completed ePRO had fewer errors than those who completed P\&P assessments (ePRO: 30.2\% [57/189] vs. P\&P: 57.7\% [254/440]; P<.001). Compared with ePRO patients, those using P\&P were older, less educated, and sicker. Common risk factors of having errors were a lower education level (P\&P: odds ratio [OR] 1.39, 95\% CI 1.20-1.62; P<.001; ePRO: OR 1.82, 95\% CI 1.22-2.72; P=.003), treated in a provincial hospital (P\&P: OR 3.34, 95\% CI 2.10-5.33; P<.001; ePRO: OR 4.73, 95\% CI 2.18-10.25; P<.001), and with severe disease (P\&P: OR 1.63, 95\% CI 1.33-1.99; P<.001; ePRO: OR 2.70, 95\% CI 1.53-4.75; P<.001). Errors peaked on postoperative day (POD) 1 for P\&P, and on POD 2 for ePRO. Conclusions: It is possible to improve data quality of longitudinally collected PRO through ePRO, compared with P\&P. However, ePRO-related sampling bias needs to be considered when designing clinical research using longitudinal PROs as major outcomes. ", doi="10.2196/28915", url="https://www.jmir.org/2021/11/e28915", url="http://www.ncbi.nlm.nih.gov/pubmed/34751657" } @Article{info:doi/10.2196/29951, author="Walker, Jan and Leveille, Suzanne and Kriegel, Gila and Lin, Chen-Tan and Liu, K. Stephen and Payne, H. Thomas and Harcourt, Kendall and Dong, Zhiyong and Fitzgerald, Patricia and Germak, Matthew and Markson, Lawrence and Jackson, L. Sara and Shucard, Hannah and Elmore, G. Joann and Delbanco, Tom", title="Patients Contributing to Visit Notes: Mixed Methods Evaluation of OurNotes", journal="J Med Internet Res", year="2021", month="Nov", day="8", volume="23", number="11", pages="e29951", keywords="electronic health record", keywords="previsit information", keywords="physician-patient relations", keywords="patient portal", keywords="mobile phone", abstract="Background: Secure patient portals are widely available, and patients use them to view their electronic health records, including their clinical notes. We conducted experiments asking them to cogenerate notes with their clinicians, an intervention called OurNotes. Objective: This study aims to assess patient and provider experiences and attitudes after 12 months of a pilot intervention. Methods: Before scheduled primary care visits, patients were asked to submit a word-constrained, unstructured interval history and an agenda for what they would like to discuss at the visit. Using site-specific methods, their providers were invited to incorporate the submissions into notes documenting the visits. Sites served urban, suburban, and rural patients in primary care practices in 4 academic health centers in Boston (Massachusetts), Lebanon (New Hampshire), Denver (Colorado), and Seattle (Washington). Each practice offered electronic access to visit notes (open notes) to its patients for several years. A mixed methods evaluation used tracking data and electronic survey responses from patients and clinicians. Participants were 174 providers and 1962 patients who submitted at least 1 previsit form. We asked providers about the usefulness of the submissions, effects on workflow, and ideas for the future. We asked patients about difficulties and benefits of providing the requested information and ideas for future improvements. Results: Forms were submitted before 9.15\% (5365/58,652) eligible visits, and 43.7\% (76/174) providers and 26.76\% (525/1962) patients responded to the postintervention evaluation surveys; 74 providers and 321 patients remembered receiving and completing the forms and answered the survey questions. Most clinicians thought interim patient histories (69/74, 93\%) and patient agendas (72/74, 97\%) as good ideas, 70\% (52/74) usually or always incorporated them into visit notes, 54\% (40/74) reported no change in visit length, and 35\% (26/74) thought they saved time. Their most common suggestions related to improving notifications when patient forms were received, making it easier to find the form and insert it into the note, and educating patients about how best to prepare their submissions. Patient respondents were generally well educated, most found the history (259/321, 80.7\%) and agenda (286/321, 89.1\%) questions not difficult to answer; more than 92.2\% (296/321) thought sending answers before the visit a good idea; 68.8\% (221/321) thought the questions helped them prepare for the visit. Common suggestions by patients included learning to write better answers and wanting to know that their submissions were read by their clinicians. At the end of the pilot, all participating providers chose to continue the OurNotes previsit form, and sites considered expanding the intervention to more clinicians and adapting it for telemedicine visits. Conclusions: OurNotes interests patients, and providers experience it as a positive intervention. Participation by patients, care partners, clinicians, and electronic health record experts will facilitate further development. ", doi="10.2196/29951", url="https://www.jmir.org/2021/11/e29951", url="http://www.ncbi.nlm.nih.gov/pubmed/34747710" } @Article{info:doi/10.2196/31483, author="S{\"a}{\"a}skilahti, Maria and Ojanen, Anna and Ahonen, Riitta and Timonen, Johanna", title="Benefits, Problems, and Potential Improvements in a Nationwide Patient Portal: Cross-sectional Survey of Pharmacy Customers' Experiences", journal="J Med Internet Res", year="2021", month="Nov", day="3", volume="23", number="11", pages="e31483", keywords="benefit", keywords="problem", keywords="improvement need", keywords="patient portal", keywords="patient engagement", keywords="experience", keywords="survey", abstract="Background: Patient engagement is a worldwide trend in health care. Patient portals have the potential to increase patients' knowledge about their health and care and therefore enhance patient engagement. Portal users' experiences are needed to determine if these portals work appropriately and if there are barriers to achieving the aims that were set before their implementation. Objective: The aim of this study is to analyze pharmacy customers' experiences of the Finnish nationwide patient portal My Kanta in terms of benefits, problems, and potential improvements. Methods: A questionnaire survey was conducted among pharmacy customers in the spring of 2019. The questionnaires (N=2866) were distributed from 18 community pharmacies across mainland Finland to customers aged ?18 years who were purchasing prescription medicines for themselves or their children aged <18 years. Using open-ended questions, customers were asked about their experiences of the benefits and problems of My Kanta and what improvements could be made. Their responses were encoded and categorized using inductive content analysis, stored in SPSS Statistics for Windows, and analyzed using frequencies. Results: Of the 2866 questionnaires, a total of 994 (34.68\%) questionnaires were included in the analysis. Most respondents were My Kanta users (820/994, 82.5\%); of these 820 users, 667 (81.3\%) reported at least one benefit, 311 (37.9\%) reported at least one problem, and 327 (39.9\%) reported at least one potential improvement when using My Kanta. The most commonly mentioned benefits were opportunities to view health data (290/667, 43.5\%) and prescriptions (247/667, 37\%) and to renew prescriptions (220/667, 33\%). The most extensively reported problems with My Kanta were that the portal lacks health data (71/311, 22.8\%), navigating the service and searching for information is difficult (68/311, 21.9\%), and the delay before health data are incorporated into the service (41/311, 13.2\%). The most frequently suggested potential improvements were that My Kanta needs more comprehensive health data (89/327, 27.2\%); the service should be easier to navigate and information easier to access (71/327, 21.7\%); the service should have more functions (51/327, 15.6\%); and health data should be entered into the portal more promptly (47/327, 14.4\%). Conclusions: Pharmacy customers reported more benefits than problems or potential improvements regarding the use of My Kanta. The service is useful for viewing health data and prescriptions and for renewing prescriptions. However, portal users would like to see more data and functions available in the portal and data searches to be made easier. These improvements could make the data and functions provided by the portal easier to view and use and hence promote patient engagement. ", doi="10.2196/31483", url="https://www.jmir.org/2021/11/e31483", url="http://www.ncbi.nlm.nih.gov/pubmed/34730542" } @Article{info:doi/10.2196/31846, author="Price, Amy and Damaraju, Aishini and Kushalnagar, Poorna and Brunoe, Summer and Srivastava, Ujwal and Debidda, Marcella and Chu, Larry", title="Coproduction, Coeducation, and Patient Involvement: Everyone Included Framework for Medical Education Across Age Groups and Cultures", journal="JMIR Med Educ", year="2021", month="Nov", day="3", volume="7", number="4", pages="e31846", keywords="medical education", keywords="coproduction", keywords="public and patient involvement", keywords="education", keywords="patient", keywords="involvement", keywords="age", keywords="demographic", keywords="model", keywords="framework", keywords="culture", keywords="exploratory", keywords="engagement", doi="10.2196/31846", url="https://mededu.jmir.org/2021/4/e31846", url="http://www.ncbi.nlm.nih.gov/pubmed/34730539" } @Article{info:doi/10.2196/28329, author="Skovlund, E. Soren and Troelsen, Havb{\ae}k Lise and Noergaard, Mellergaard Lise and Pietraszek, Anna and Jakobsen, Erik Poul and Ejskjaer, Niels", title="Feasibility and Acceptability of a Digital Patient-Reported Outcome Tool in Routine Outpatient Diabetes Care: Mixed Methods Formative Pilot Study", journal="JMIR Form Res", year="2021", month="Nov", day="3", volume="5", number="11", pages="e28329", keywords="patient-reported outcomes", keywords="diabetes", keywords="person-centered care", keywords="person-centered communication", keywords="dialog", keywords="mental health", keywords="self-management", keywords="collaborative care", keywords="value-based health care", keywords="mixed-methods", keywords="mobile phone", keywords="mHealth", abstract="Background: Improvements in the digital capabilities of health systems provide new opportunities for the integration of patient-reported outcome (PRO) solutions in routine care, which can facilitate the delivery of person-centered diabetes care. We undertook this study as part of our development of a new digital PRO diabetes questionnaire and clinical dialog support tool for use by people with diabetes and their health care professionals (HCPs) to improve person-centered diabetes care quality and outcomes. Objective: This study evaluates the feasibility, acceptability, and perceived benefits and impacts of using a digital PRO diabetes tool, DiaProfil, in routine outpatient diabetes care. Methods: Overall, 12 people with diabetes scheduled for routine medical diabetes visits at the outpatient clinic were recruited. Purposive sampling was used to optimize heterogeneity regarding age, gender, duration, type of diabetes, treatment modality, and disease severity. Participants filled out a PRO diabetes questionnaire 2 to 5 days before their visit. During the visit, HCPs used a digital PRO tool to review PRO data with the person with diabetes for collaborative care planning. Participants completed evaluation forms before and after the visit and were interviewed for 30 to 45 minutes after the visit. HCPs completed the evaluation questionnaires after each visit. All visits were audio-recorded and transcribed for analysis. Data were analyzed using quantitative, qualitative, and mixed methods analyses. Results: People with diabetes found the PRO diabetes questionnaire to be relevant, acceptable, and feasible to complete from home. People with diabetes and HCPs found the digital PRO tool to be feasible and acceptable for use during the diabetes visit and would like to continue using it. HCPs were able to use the tool in a person-centered manner, as intended. For several people with diabetes, completion of the questionnaire facilitated positive reflection and better preparation for the visit. The use of the PRO tool primarily improved the quality of the dialog by improving the identification and focus on the issues most important to the person with diabetes. People with diabetes did not report any negative aspects of the PRO tool, whereas HCPs highlighted that it was demanding when the person with diabetes had many PRO issues that required attention within the predefined time allocated for a visit. Conclusions: The Danish PRO diabetes questionnaire and the digital tool, DiaProfil, are feasible and acceptable solutions for routine diabetes visits, and this tool may generate important benefits related to advancement of person-centered care. Further research is now required to corroborate and expand these formative insights on a larger scale and in diverse health care settings. The results of this study are therefore being used to define research hypotheses and finalize real-world PRO evaluation tools for a forthcoming large-scale multisector implementation study in Denmark. ", doi="10.2196/28329", url="https://formative.jmir.org/2021/11/e28329", url="http://www.ncbi.nlm.nih.gov/pubmed/34730545" } @Article{info:doi/10.2196/31294, author="Nunes Vilaza, Giovanna and Coyle, David and Bardram, Eyvind Jakob", title="Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey", journal="J Med Internet Res", year="2021", month="Oct", day="29", volume="23", number="10", pages="e31294", keywords="digital medicine", keywords="health informatics", keywords="health data repositories", keywords="personal sensing", keywords="technology acceptance", keywords="willingness to share data", keywords="human-centered computing", keywords="ethics", abstract="Background: Digital health research repositories propose sharing longitudinal streams of health records and personal sensing data between multiple projects and researchers. Motivated by the prospect of personalizing patient care (precision medicine), these initiatives demand broad public acceptance and large numbers of data contributors, both of which are challenging. Objective: This study investigates public attitudes toward possibly contributing to digital health research repositories to identify factors for their acceptance and to inform future developments. Methods: A cross-sectional online survey was conducted from March 2020 to December 2020. Because of the funded project scope and a multicenter collaboration, study recruitment targeted young adults in Denmark and Brazil, allowing an analysis of the differences between 2 very contrasting national contexts. Through closed-ended questions, the survey examined participants' willingness to share different data types, data access preferences, reasons for concern, and motivations to contribute. The survey also collected information about participants' demographics, level of interest in health topics, previous participation in health research, awareness of examples of existing research data repositories, and current attitudes about digital health research repositories. Data analysis consisted of descriptive frequency measures and statistical inferences (bivariate associations and logistic regressions). Results: The sample comprises 1017 respondents living in Brazil (1017/1600, 63.56\%) and 583 in Denmark (583/1600, 36.44\%). The demographics do not differ substantially between participants of these countries. The majority is aged between 18 and 27 years (933/1600, 58.31\%), is highly educated (992/1600, 62.00\%), uses smartphones (1562/1600, 97.63\%), and is in good health (1407/1600, 87.94\%). The analysis shows a vast majority were very motivated by helping future patients (1366/1600, 85.38\%) and researchers (1253/1600, 78.31\%), yet very concerned about unethical projects (1219/1600, 76.19\%), profit making without consent (1096/1600, 68.50\%), and cyberattacks (1055/1600, 65.94\%). Participants' willingness to share data is lower when sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.38\%), in contrast to more traditional health research information. Only 13.44\% (215/1600) find it desirable to grant data access to private companies, and most would like to stay informed about which projects use their data (1334/1600, 83.38\%) and control future data access (1181/1600, 73.81\%). Findings indicate that favorable attitudes toward digital health research repositories are related to a personal interest in health topics (odds ratio [OR] 1.49, 95\% CI 1.10-2.02; P=.01), previous participation in health research studies (OR 1.70, 95\% CI 1.24-2.35; P=.001), and awareness of examples of research repositories (OR 2.78, 95\% CI 1.83-4.38; P<.001). Conclusions: This study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate. ", doi="10.2196/31294", url="https://www.jmir.org/2021/10/e31294", url="http://www.ncbi.nlm.nih.gov/pubmed/34714253" } @Article{info:doi/10.2196/30637, author="Agrawal, Lavlin and Ndabu, Theophile and Mulgund, Pavankumar and Sharman, Raj", title="Factors Affecting the Extent of Patients' Electronic Medical Record Use: An Empirical Study Focusing on System and Patient Characteristics", journal="J Med Internet Res", year="2021", month="Oct", day="28", volume="23", number="10", pages="e30637", keywords="electronic medical record", keywords="patient safety", keywords="caregiver", keywords="chronic conditions", keywords="HINTS dataset", keywords="patient technology acceptance model", abstract="Background: Patients' access to and use of electronic medical records (EMRs) places greater information in their hands, which helps them better comanage their health, leading to better clinical outcomes. Despite numerous benefits that promote health and well-being, patients' acceptance and use of EMRs remains low. We study the impact of predictors that affect the use of EMR by patients to understand better the underlying causal factors for the lower use of EMR. Objective: This study aims to examine the critical system (eg, performance expectancy and effort expectancy) and patient characteristics (eg, health condition, issue involvement, preventive health behaviors, and caregiving status) that influence the extent of patients' EMR use. Methods: We used secondary data collected by Health Information National Trends Survey 5 cycle 3 and performed survey data analysis using structural equation modeling technique to test our hypotheses. Structural equation modeling is a technique commonly used to measure and analyze the relationships of observed and latent variables. We also addressed common method bias to understand if there was any systematic effect on the observed correlation between the measures for the predictor and predicted variables. Results: The statistically significant drivers of the extent of EMR use were performance expectancy ($\beta$=.253;?P<.001), perceived behavior control ($\beta$=.236;?P<.001), health knowledge ($\beta$=--.071;?P=.007), caregiving status ($\beta$=.059;?P=.013), issue involvement ($\beta$=.356;?P<.001), chronic conditions ($\beta$=.071;?P=.016), and preventive health behavior ($\beta$=.076;?P=.005). The model accounted for 32.9\% of the variance in the extent of EMR use. Conclusions: The study found that health characteristics, such as chronic conditions and patient disposition (eg, preventive health behavior and issue involvement), directly affect the extent of EMR use. The study also revealed that issue involvement mediates the impact of preventive health behaviors and the presence of chronic conditions on the extent of patients' EMR use. ", doi="10.2196/30637", url="https://www.jmir.org/2021/10/e30637", url="http://www.ncbi.nlm.nih.gov/pubmed/34709181" } @Article{info:doi/10.2196/26890, author="Borysowski, Jan and G{\'o}rski, Andrzej", title="ClinicalTrials.gov as a Source of Information About Expanded Access Programs: Cohort Study", journal="J Med Internet Res", year="2021", month="Oct", day="28", volume="23", number="10", pages="e26890", keywords="ClinicalTrials.gov", keywords="expanded access", keywords="expanded access program", keywords="compassionate use", keywords="unapproved drug", keywords="investigational drug", abstract="Background: ClinicalTrials.gov (CT.gov) is the most comprehensive internet-based register of different types of clinical studies. Expanded access is the use of unapproved drugs, biologics, or medical devices outside of clinical trials. One of the key problems in expanded access is the availability to both health care providers and patients of information about unapproved treatments. Objective: We aimed to evaluate CT.gov as a potential source of information about expanded access programs. Methods: We assessed the completeness of information in the records of 228 expanded access programs registered with CT.gov from February 2017 through May 2020. Moreover, we examined what percentage of published expanded access studies has been registered with CT.gov. Logistic regression (univariate and multivariate) and mediation analyses were used to identify the predictors of the absence of some information and a study's nonregistration. Results: We found that some important data were missing from the records of many programs. Information that was missing most often included a detailed study description, facility information, central contact person, and eligibility criteria (55.3\%, 54.0\%, 41.7\%, and 17.5\% of the programs, respectively). Multivariate analysis showed that information about central contact person was more likely to be missing from records of studies registered in 2017 (adjusted OR 21.93; 95\% CI 4.42-172.29; P<.001). This finding was confirmed by mediation analysis (P=.02). Furthermore, 14\% of the programs were registered retrospectively. We also showed that only 33 of 77 (42.9\%) expanded access studies performed in the United States and published from 2014 through 2019 were registered with CT.gov. However, multivariate logistic regression analysis showed no significant association between any of the variables related to the studies and the odds of study nonregistration (P>.01). Conclusions: Currently, CT.gov is a quite fragmentary source of data on expanded access programs. This problem is important because CT.gov is the only publicly available primary source of information about specific programs. We suggest the actions that should be taken by different stakeholders to fully exploit this register as a source of information about expanded access. ", doi="10.2196/26890", url="https://www.jmir.org/2021/10/e26890", url="http://www.ncbi.nlm.nih.gov/pubmed/34709189" } @Article{info:doi/10.2196/33090, author="Srivastava, Ujwal and Price, Amy and Chu, F. Larry", title="Effects of a 2-Week Remote Learning Program on Empathy and Clinical and Communication Skills in Premedical Students: Mixed Methods Evaluation Study", journal="JMIR Med Educ", year="2021", month="Oct", day="27", volume="7", number="4", pages="e33090", keywords="empathy", keywords="clinical skills", keywords="communication skills", keywords="high school", keywords="undergraduate", keywords="summer program", keywords="premedical program", keywords="remote learning", abstract="Background: Expressing empathy builds trust with patients, increases patient satisfaction, and is associated with better health outcomes. Research shows that expressing empathy to patients improves patient adherence to medications and decreases patient anxiety and the number of malpractice lawsuits. However, there is a dearth of research on teaching empathy to premedical students. The Clinical Science, Technology, and Medicine Summer Internship of Stanford Medicine (also called the Stanford Anesthesia Summer Institute) is a 2-week collaborative medical internship for high school and undergraduate students to inspire learners to be compassionate health care providers. The summer 2020 program was adapted to accomplish these objectives in a fully remote environment because of the COVID-19 global pandemic. Objective: This study aims to measure the change in empathy and competencies of participants in clinical and communication skills before and after program participation. Methods: A total of 41 participants completed only the core track of this program, and 39 participants completed the core + research track of this program. Participants in both tracks received instructions in selected clinical skills and interacted directly with patients to improve their interviewing skills. Research track participants received additional instructions in research methodology. All participants completed web-based pre- and postsurveys containing Knowledge and Skills Assessment (KSA) questions. Participant empathy was assessed using the validated Consultation and Relational Empathy measure. A subset of participants completed optional focus groups to discuss empathy. The pre- and post-KSA and Consultation and Relational Empathy measure scores were compared using paired 2-tailed t tests and a linear regression model. Open-ended focus group answers were then analyzed thematically. Results: Participants in both tracks demonstrated significant improvement in empathy after the 2-week remote learning course (P=.007 in core track; P<.001 in research track). These results remained significant when controlling for gender and age. A lower pretest score was associated with a greater change in empathy. Participants in both tracks demonstrated significant improvement in KSA questions related to surgical skills (P<.001 in core track; P<.001 in research track), epinephrine pen use (P<.001 in core track; P<.001 in research track), x-ray image interpretation (P<.001 in core track; P<.001 in research track), and synthesizing information to solve problems (P<.001 in core track; P=.05 in research track). The core track participants also showed significant improvements in health communication skills (P=.001). Qualitative analysis yielded 3 themes: empathy as action, empathy as a mindset, and empathy in designing health care systems. Conclusions: Summer internships that introduce high school and undergraduate students to the field of health care through hands-on interaction and patient involvement may be an effective way to develop measurable empathy skills when combined with clinical skills training and mentorship. Notably, increases in empathy were observed in a program administered via a remote learning environment. ", doi="10.2196/33090", url="https://mededu.jmir.org/2021/4/e33090", url="http://www.ncbi.nlm.nih.gov/pubmed/34704956" } @Article{info:doi/10.2196/27628, author="Giang, W. Wayne C. and Bland, Emma and Chen, Jeffrey and Col{\'o}n-Morales, M. Coralys and Alvarado, M. Michelle", title="User Interactions With Health Insurance Decision Aids: User Study With Retrospective Think-Aloud Interviews", journal="JMIR Hum Factors", year="2021", month="Oct", day="26", volume="8", number="4", pages="e27628", keywords="insurance, health", keywords="health benefits plans", keywords="employee", keywords="decision aids", keywords="cognitive ergonomics", keywords="human factors engineering", abstract="Background: Two barriers to effective enrollment decisions are low health insurance literacy and lack of knowledge about how to choose a plan. To remedy these issues, digital decision aids have been used to increase the knowledge of plan options and to guide the decision process. Previous research has shown that the way information is presented in a decision aid can impact consumer choice, and existing health insurance decision aids vary in their design, content, and layout. Commercial virtual benefits counselors (VBCs) are digital decision aids that provide decision support by mimicking the guidance provided by an in-person human resources (HR) counselor, whereas more traditional HR websites provide information that requires self-directed navigation through the system. However, few studies have compared how decision processes are impacted by these different methods of providing information. Objective: This study aims to examine how individuals interact with two different types of health insurance decision aids (guided VBCs that mimic conversations with a real HR counselor and self-directed HR websites that provide a broad range of detailed information) to make employer-provided health insurance decisions. Methods: In total, 16 employees from a local state university completed a user study in which they made mock employer-provided health insurance decisions using 1 of 2 systems (VBC vs HR website). Participants took part in a retrospective think-aloud interview, cued using eye-tracking data to understand decision aid interactions. In addition, pre- and postexperiment measures of literacy and knowledge and decision conflict and usability of the system were also examined. Results: Both the VBC and HR website had positive benefits for health insurance knowledge and literacy. Previous health insurance knowledge also impacted how individuals used decision aids. Individuals who scored lower on the pre-experiment knowledge test focused on different decision factors and were more conflicted about their final enrollment decisions than those with higher knowledge test scores. Although both decision aids resulted in similar changes in the Health Insurance Literacy Measure and knowledge test scores, perceived usability differed. Website navigation was not intuitive, and it took longer to locate information, although users appreciated that it had more details; the VBC website was easier to use but had limited information. Lower knowledge participants, in particular, found the website to be less useful and harder to use than those with higher health insurance knowledge. Finally, out-of-pocket cost estimation tools can lead to confusion when they do not highlight the factors that contribute to the cost estimate. Conclusions: This study showed that health insurance decision aids help individuals improve their confidence in selecting and using health insurance plans. However, previous health insurance knowledge plays a significant role in how users interact with and benefit from decision aids, even when information is presented in different formats. ", doi="10.2196/27628", url="https://humanfactors.jmir.org/2021/4/e27628", url="http://www.ncbi.nlm.nih.gov/pubmed/34698647" } @Article{info:doi/10.2196/31616, author="Yung, Alan and Kay, Judy and Beale, Philip and Gibson, A. Kathryn and Shaw, Tim", title="Computer-Based Decision Tools for Shared Therapeutic Decision-making in Oncology: Systematic Review", journal="JMIR Cancer", year="2021", month="Oct", day="26", volume="7", number="4", pages="e31616", keywords="oncology", keywords="cancer", keywords="computer-based", keywords="decision support", keywords="decision-making", keywords="system", keywords="tool", keywords="machine learning", keywords="artificial intelligence", keywords="uncertainty", keywords="shared decision-making", abstract="Background: Therapeutic decision-making in oncology is a complex process because physicians must consider many forms of medical data and protocols. Another challenge for physicians is to clearly communicate their decision-making process to patients to ensure informed consent. Computer-based decision tools have the potential to play a valuable role in supporting this process. Objective: This systematic review aims to investigate the extent to which computer-based decision tools have been successfully adopted in oncology consultations to improve patient-physician joint therapeutic decision-making. Methods: This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 checklist and guidelines. A literature search was conducted on February 4, 2021, across the Cochrane Database of Systematic Reviews (from 2005 to January 28, 2021), the Cochrane Central Register of Controlled Trials (December 2020), MEDLINE (from 1946 to February 4, 2021), Embase (from 1947 to February 4, 2021), Web of Science (from 1900 to 2021), Scopus (from 1969 to 2021), and PubMed (from 1991 to 2021). We used a snowball approach to identify additional studies by searching the reference lists of the studies included for full-text review. Additional supplementary searches of relevant journals and gray literature websites were conducted. The reviewers screened the articles eligible for review for quality and inclusion before data extraction. Results: There are relatively few studies looking at the use of computer-based decision tools in oncology consultations. Of the 4431 unique articles obtained from the searches, only 10 (0.22\%) satisfied the selection criteria. From the 10 selected studies, 8 computer-based decision tools were identified. Of the 10 studies, 6 (60\%) were conducted in the United States. Communication and information-sharing were improved between physicians and patients. However, physicians did not change their habits to take advantage of computer-assisted decision-making tools or the information they provide. On average, the use of these computer-based decision tools added approximately 5 minutes to the total length of consultations. In addition, some physicians felt that the technology increased patients' anxiety. Conclusions: Of the 10 selected studies, 6 (60\%) demonstrated positive outcomes, 1 (10\%) showed negative results, and 3 (30\%) were neutral. Adoption of computer-based decision tools during oncology consultations continues to be low. This review shows that information-sharing and communication between physicians and patients can be improved with the assistance of technology. However, the lack of integration with electronic health records is a barrier. This review provides key requirements for enhancing the chance of success of future computer-based decision tools. However, it does not show the effects of health care policies, regulations, or business administration on physicians' propensity to adopt the technology. Nevertheless, it is important that future research address the influence of these higher-level factors as well. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42021226087; https://www.crd.york.ac.uk/prospero/display\_record.php?ID=CRD42021226087 ", doi="10.2196/31616", url="https://cancer.jmir.org/2021/4/e31616", url="http://www.ncbi.nlm.nih.gov/pubmed/34544680" } @Article{info:doi/10.2196/25497, author="Guni, Ahmad and Normahani, Pasha and Davies, Alun and Jaffer, Usman", title="Harnessing Machine Learning to Personalize Web-Based Health Care Content", journal="J Med Internet Res", year="2021", month="Oct", day="19", volume="23", number="10", pages="e25497", keywords="internet", keywords="online health information", keywords="personalized content", keywords="patient education", keywords="machine learning", doi="10.2196/25497", url="https://www.jmir.org/2021/10/e25497", url="http://www.ncbi.nlm.nih.gov/pubmed/34665146" } @Article{info:doi/10.2196/29868, author="Nilsson, Evalill and Sverker, Annette and Bendtsen, Preben and Eldh, Catrine Ann", title="A Human, Organization, and Technology Perspective on Patients' Experiences of a Chat-Based and Automated Medical History--Taking Service in Primary Health Care: Interview Study Among Primary Care Patients", journal="J Med Internet Res", year="2021", month="Oct", day="18", volume="23", number="10", pages="e29868", keywords="digital encounter", keywords="digital healthcare", keywords="e-consultation", keywords="e-health", keywords="interview", keywords="patient perspective", keywords="primary healthcare", keywords="qualitative study", keywords="telemedicine", keywords="telehealth", abstract="Background: The use of e-visits in health care is progressing rapidly worldwide. To date, studies on the advantages and disadvantages of e-consultations in the form of chat services for all inquiries in primary care have focused on the perspective of health care professionals (HCPs) rather than those of end users (patients). Objective: This study aims to explore patients' experiences using a chat-based and automated medical history--taking service in regular, tax-based, not-for-profit primary care in Sweden. Methods: Overall, 25 individual interviews were conducted with patients in the catchment areas of 5 primary care centers (PCCs) in Sweden that tested a chat-based and automated medical history--taking service for all types of patient inquiries. The semistructured interviews were transcribed verbatim before content analysis using inductive and deductive strategies, the latter including an unconstrained matrix of human, organization, and technology perspectives. Results: The service provided an easily managed way for patients to make written contact with HCPs, which was considered beneficial for some patients and issues but less suitable for others (acute or more complex cases). The automated medical history--taking service was perceived as having potential but still derived from what HCPs need to know and how they address and communicate health and health care issues. Technical skills were not considered as necessary for a mobile phone chat as for handling a computer; however, patients still expressed concern for people with less digital literacy. The opportunity to take one's time and reflect on one's situation before answering questions from the HCPs was found to reduce stress and prevent errors, and patients speculated that it might be the same for the HCPs on the other end of the system. Patients appreciated the ability to have a conversation from almost anywhere, even from places not suitable for telephone calls. The asynchronicity of the chat service allowed the patients to take more control of the conversation and initiate a chat at any time at their own convenience; however, it could also lead to lengthy conversations where a single issue in the worst cases could take days to close. The opportunity to upload photographs made some visits to the PCC redundant, which would otherwise have been necessary if the ordinary telephone service had been used, saving patients both time and money. Conclusions: Patients generally had a positive attitude toward e-visits in primary care and were generally pleased with the prospects of the digital tool tested, somewhat more with the actual chat than with the automated history-taking system preceding the chat. Although patients expect their PCC to offer a range of different means of communication, the human, organization, and technology analysis revealed a need for more extensive (end) user experience design in the further development of the chat service. ", doi="10.2196/29868", url="https://www.jmir.org/2021/10/e29868", url="http://www.ncbi.nlm.nih.gov/pubmed/34661544" } @Article{info:doi/10.2196/32911, author="Diaz, Pilar Monica and Steen, Mary and Brown, Angela and Fleet, Julie-Anne and Williams, Jan", title="Female Genital Mutilation/Cutting Education for Midwives and Nurses as Informed by Women's Experiences: Protocol for an Exploratory Sequential Mixed Methods Study", journal="JMIR Res Protoc", year="2021", month="Oct", day="15", volume="10", number="10", pages="e32911", keywords="education", keywords="midwives", keywords="nurses", keywords="female genital mutilation/cutting", keywords="maternity care", keywords="women's health care, knowledge", keywords="attitude", keywords="practice", abstract="Background: Female genital mutilation/cutting (FGM/C) is a complex and deeply rooted sociocultural custom that is innately entrenched in the lives of those who continue its practice despite the physical and psychological dangers it perpetrates. FGM/C is considered a significant independent risk factor for adverse maternal and fetal outcomes in pregnancy and childbirth. Several studies in high-income countries have explored the experiences and needs of women with FGM/C as well as the knowledge of the health professionals, particularly midwives and nurses, who care for them. However, to date, no studies have evaluated the implementation of education for health professionals in high-income countries to meet the specific needs of women with FGM/C. Objective: This study aims to explore the impact of an FGM/C education program for midwives and nurses as informed by the experiences of women with FGM/C accessing maternity, gynecological, and sexual health services in South Australia. Methods: This study will adopt a three-phase, exploratory sequential mixed methods design. Phase 1 will involve the exploration of women with FGM/C views and experiences accessing maternity and gynecological (including sexual health) services in South Australia. The findings from phase 1 will inform phase 2: the development of an educational program for midwives and nurses on the health and cultural needs of women with FGM/C. Phase 3 will involve the evaluation of the program by measuring midwives' and nurses' changes in knowledge, attitude, and practice immediately before and after the education as well as 4 months after completing the program. Phase 1 of this study has been approved by the Women's and Children's Health Network human research ethics committee (ID number 2021/HRE00156) and the University of South Australia human research ethics committee (ID number 204096). Results: Phase 1 will commence in August 2021, with the interpretation of findings being undertaken by November 2021. Phase 2 will be developed and facilitated by February 2022, and the final phase of this study will begin in March 2022. This study is expected to be completed by February 2023. Conclusions: The findings of this research will provide insight into the development and evaluation of education programs for midwives and nurses that includes collaboration with women from culturally and linguistically diverse backgrounds to address the specific cultural and health needs of communities. International Registered Report Identifier (IRRID): PRR1-10.2196/32911 ", doi="10.2196/32911", url="https://www.researchprotocols.org/2021/10/e32911", url="http://www.ncbi.nlm.nih.gov/pubmed/34652281" } @Article{info:doi/10.2196/29406, author="Hu, Dian and Liu, Meng-Hsin Cindy and Hamdy, Rana and Cziner, Michael and Fung, Melody and Dobbs, Samuel and Rogers, Laura and Turner, Mitchell Monique and Broniatowski, Andr{\'e} David", title="Questioning the Yelp Effect: Mixed Methods Analysis of Web-Based Reviews of Urgent Cares", journal="J Med Internet Res", year="2021", month="Oct", day="8", volume="23", number="10", pages="e29406", keywords="urgent care", keywords="doctor-patient communication", keywords="doctor web-based review", keywords="review websites", abstract="Background: Providers of on-demand care, such as those in urgent care centers, may prescribe antibiotics unnecessarily because they fear receiving negative reviews on web-based platforms from unsatisfied patients---the so-called Yelp effect. This effect is hypothesized to be a significant driver of inappropriate antibiotic prescribing, which exacerbates antibiotic resistance. Objective: In this study, we aimed to determine the frequency with which patients left negative reviews on web-based platforms after they expected to receive antibiotics in an urgent care setting but did not. Methods: We obtained a list of 8662 urgent care facilities from the Yelp application programming interface. By using this list, we automatically collected 481,825 web-based reviews from Google Maps between January 21 and February 10, 2019. We used machine learning algorithms to summarize the contents of these reviews. Additionally, 200 randomly sampled reviews were analyzed by 4 annotators to verify the types of messages present and whether they were consistent with the Yelp effect. Results: We collected 481,825 reviews, of which 1696 (95\% CI 1240-2152) exhibited the Yelp effect. Negative reviews primarily identified operations issues regarding wait times, rude staff, billing, and communication. Conclusions: Urgent care patients rarely express expectations for antibiotics in negative web-based reviews. Thus, our findings do not support an association between a lack of antibiotic prescriptions and negative web-based reviews. Rather, patients' dissatisfaction with urgent care was most strongly linked to operations issues that were not related to the clinical management plan. ", doi="10.2196/29406", url="https://www.jmir.org/2021/10/e29406", url="http://www.ncbi.nlm.nih.gov/pubmed/34623316" } @Article{info:doi/10.2196/29074, author="Raj, Minakshi and Iott, Bradley", title="Evaluation of Family Caregivers' Use of Their Adult Care Recipient's Patient Portal From the 2019 Health Information National Trends Survey: Secondary Analysis", journal="JMIR Aging", year="2021", month="Oct", day="4", volume="4", number="4", pages="e29074", keywords="informal caregivers", keywords="family caregivers", keywords="patient portal", keywords="electronic health record", keywords="telehealth", keywords="aging in place", keywords="web-based medical record", abstract="Background: Patient engagement is critical for realizing the value of telehealth modalities such as the patient portal. Family caregiver engagement may also be critical for facilitating the use of the patient portal among adult patients, including older adults. Objective: This study aims to analyze the 2019 Health Information National Trends Survey to characterize family caregivers' use of their care recipient's patient portal in terms of sociodemographic, health, and caregiving characteristics and caregivers' use of their own portal. Methods: We conducted a secondary analysis of cross-sectional data from the National Cancer Institute's Health Information National Trends Survey 5 Cycle 3. This survey was administered to 5438 US adults between January and May 2019. We analyzed data from 320 respondents who were identified as family caregivers. We created measures to reflect family caregivers' use of their care recipient's and their own portal, caregiver demographic and caregiving characteristics, and care recipient health characteristics. Results: Over half of the caregivers (179/320, 55.9\%) reported using their own portal at least once, whereas only one-third (105/320, 32.8\%) reported using their care recipient's record in the previous 12 months. Caregivers using their own portal were significantly more likely to use their care recipient's portal (odds ratio 11.18; P<.001). Conclusions: Policies should enable patients to designate family caregivers who can access their patient portal. Providers could screen caregivers for challenges in their caregiving responsibilities that may be addressed through the portal so they can better support their adult relatives. Interventions to support family caregivers, especially older caregivers, in using their own portal may facilitate their use of their care recipient's portal. ", doi="10.2196/29074", url="https://aging.jmir.org/2021/4/e29074", url="http://www.ncbi.nlm.nih.gov/pubmed/34605766" } @Article{info:doi/10.2196/29885, author="Li, Jinhui and Zheng, Han and Duan, Xu", title="Factors Influencing the Popularity of a Health-Related Answer on a Chinese Question-and-Answer Website: Case Study", journal="J Med Internet Res", year="2021", month="Sep", day="28", volume="23", number="9", pages="e29885", keywords="answer-response behaviors", keywords="Zhihu", keywords="HPV vaccine information", keywords="content features", keywords="context features", keywords="contributor features", abstract="Background: Social question-and-answer (Q\&A) sites have become an important venue for individuals to obtain and share human papillomavirus (HPV) vaccine knowledge. Objective: This study aims to examine how different features of an HPV vaccine--related answer are associated with users' response behaviors on social Q\&A websites. Methods: A total of 2953 answers and 270 corresponding questions regarding the HPV vaccine were collected from a leading Chinese social Q\&A platform, Zhihu. Three types of key features, including content, context, and contributor, were extracted and coded. Negative binomial regression models were used to examine their impact on the vote and comment count of an HPV vaccine--related answer. Results: The findings showed that both content length and vividness were positively related to the response behaviors of HPV vaccine--related answers. In addition, compared with answers under the question theme benefits and risks, answers under the question theme vaccination experience received fewer votes and answers under the theme news opinions received more votes but fewer comments. The effects of characteristics of contributors were also supported, suggesting that answers from a male contributor with more followers and no professional identity would attract more votes and comments from community members. The significant interaction effect between content and context features further showed that long and vivid answers about HPV vaccination experience were more likely to receive votes and comments of users than those about benefits and risks. Conclusions: The study provides a complete picture of the underlying mechanism behind response behaviors of users toward HPV vaccine--related answers on social Q\&A websites. The results help health community organizers develop better strategies for building and maintaining a vibrant web-based community for communicating HPV vaccine knowledge. ", doi="10.2196/29885", url="https://www.jmir.org/2021/9/e29885", url="http://www.ncbi.nlm.nih.gov/pubmed/34581675" } @Article{info:doi/10.2196/25630, author="Wu, Dan and An, Jiye and Yu, Ping and Lin, Hui and Ma, Li and Duan, Huilong and Deng, Ning", title="Patterns for Patient Engagement with the Hypertension Management and Effects of Electronic Health Care Provider Follow-up on These Patterns: Cluster Analysis", journal="J Med Internet Res", year="2021", month="Sep", day="28", volume="23", number="9", pages="e25630", keywords="hypertension", keywords="health care services", keywords="mHealth", keywords="patient engagement", keywords="electronic follow-up", keywords="cluster analysis", abstract="Background: Hypertension is a long-term medical condition. Electronic and mobile health care services can help patients to self-manage this condition. However, not all management is effective, possibly due to different levels of patient engagement (PE) with health care services. Health care provider follow-up is an intervention to promote PE and blood pressure (BP) control. Objective: This study aimed to discover and characterize patterns of PE with a hypertension self-management app, investigate the effects of health care provider follow-up on PE, and identify the follow-up effects on BP in each PE pattern. Methods: PE was represented as the number of days that a patient recorded self-measured BP per week. The study period was the first 4 weeks for a patient to engage in the hypertension management service. K-means algorithm was used to group patients by PE. There was compliance follow-up, regular follow-up, and abnormal follow-up in management. The follow-up effect was calculated by the change in PE (CPE) and the change in systolic blood pressure (CSBP, SBP) before and after each follow-up. Chi-square tests and z scores were used to ascertain the distribution of gender, age, education level, SBP, and the number of follow-ups in each cluster. The follow-up effect was identified by analysis of variances. Once a significant effect was detected, Bonferroni multiple comparisons were further conducted to identify the difference between 2 clusters. Results: Patients were grouped into 4 clusters according to PE: (1) PE started low and dropped even lower (PELL), (2) PE started high and remained high (PEHH), (3) PE started high and dropped to low (PEHL), and (4) PE started low and rose to high (PELH). Significantly more patients over 60 years old were found in the PEHH cluster (P?.05). Abnormal follow-up was significantly less frequent (P?.05) in the PELL cluster. Compliance follow-up and regular follow-up can improve PE. In the clusters of PEHH and PELH, the improvement in PE in the first 3 weeks and the decrease in SBP in all 4 weeks were significant after follow-up. The SBP of the clusters of PELL and PELH decreased more (--6.1 mmHg and --8.4 mmHg) after follow-up in the first week. Conclusions: Four distinct PE patterns were identified for patients engaging in the hypertension self-management app. Patients aged over 60 years had higher PE in terms of recording self-measured BP using the app. Once SBP reduced, patients with low PE tended to stop using the app, and a continued decline in PE occurred simultaneously with the increase in SBP. The duration and depth of the effect of health care provider follow-up were more significant in patients with high or increased engagement after follow-up. ", doi="10.2196/25630", url="https://www.jmir.org/2021/9/e25630", url="http://www.ncbi.nlm.nih.gov/pubmed/34581680" } @Article{info:doi/10.2196/19794, author="Toonders, Johanna Suze Adriana and van Westrienen, Elisabeth Paula and Konings, Sophie and Nieboer, E. Marianne and Veenhof, Cindy and Pisters, F. Martijn", title="Patients' Perspectives on the Usability of a Blended Approach to an Integrated Intervention for Patients With Medically Unexplained Physical Symptoms: Mixed Methods Study", journal="J Med Internet Res", year="2021", month="Sep", day="28", volume="23", number="9", pages="e19794", keywords="usability", keywords="medically unexplained physical symptoms", keywords="blended care", abstract="Background: Medically unexplained physical symptoms are physical symptoms, such as pain, fatigue, and dizziness, that persist for more than a few weeks and cannot be explained after adequate medical examination. Treatment for preventing the chronicity of symptoms is recommended. A promising approach is identifying patients who are at risk and subsequently offering a blended care intervention that focuses on promoting self-management while using eHealth as a supportive tool. When these interventions match with a patient's expectations, their effectiveness grows. Objective: This study aimed to obtain more insights into usability from the patient perspective to improve future interventions. Methods: A mixed methods design (ie, the use of qualitative and quantitative data) was used. Through semistructured interviews, in-depth insights were gained into patients' perspectives on usability. The analysis process was continuous and iterative. Data were synthesized and categorized into different themes. The System Usability Scale, which measures the usability of a system, was used to compare participants that found usability to be low, medium, or high. This study was approved by the Medical Ethical Committee Utrecht (approval number: 17-391/C). Results: Saturation was reached after interviewing 13 participants. The following four themes emerged from the interviews: motivations and expectations prior to participating in the program, the applicability of e-coaching, the role of health care professionals, and the integrated design of the blended approach. Conclusions: The successful implementation of integrated blended care interventions based on patients' perspectives requires matching treatments to patients' individual situations and motivations. Furthermore, personalizing the relative frequency of face-to-face appointments and e-coaching can improve usability. ", doi="10.2196/19794", url="https://www.jmir.org/2021/9/e19794", url="http://www.ncbi.nlm.nih.gov/pubmed/34581674" } @Article{info:doi/10.2196/26721, author="Xu, Huan Richard and Zhou, Ling-Ming and Wong, Lai-Yi Eliza and Wang, Dong", title="The Association Between Patients' eHealth Literacy and Satisfaction With Shared Decision-making and Well-being: Multicenter Cross-sectional Study", journal="J Med Internet Res", year="2021", month="Sep", day="24", volume="23", number="9", pages="e26721", keywords="eHealth literacy", keywords="shared decision-making", keywords="well-being", keywords="eHEALS", keywords="ICECAP-A", abstract="Background: Although previous studies have shown that a high level of health literacy can improve patients' ability to engage in health-related shared decision-making (SDM) and improve their quality of life, few studies have investigated the role of eHealth literacy in improving patient satisfaction with SDM (SSDM) and well-being. Objective: This study aims to assess the relationship between patients' eHealth literacy and their socioeconomic determinants and to investigate the association between patients' eHealth literacy and their SSDM and well-being. Methods: The data used in this study were obtained from a multicenter cross-sectional survey in China. The eHealth Literacy Scale (eHEALS) and Investigating Choice Experiments Capability Measure for Adults were used to measure patients' eHealth literacy and capability well-being, respectively. The SSDM was assessed by using a self-administered questionnaire. The Kruskal-Wallis one-way analysis of variance and Wilcoxon signed-rank test were used to compare the differences in the eHEALS, SSDM, and Investigating Choice Experiments Capability Measure for Adults scores of patients with varying background characteristics. Ordinary least square regression models were used to assess the relationship among eHealth literacy, SSDM, and well-being adjusted by patients' background characteristics. Results: A total of 569 patients completed the questionnaire. Patients who were male, were highly educated, were childless, were fully employed, were without chronic conditions, and indicated no depressive disorder reported a higher mean score on the eHEALS. Younger patients (SSDM?61 years=88.6 vs SSDM16-30 years=84.2) tended to show higher SSDM. Patients who were rural residents and were well paid were more likely to report good capability well-being. Patients who had a higher SSDM and better capability well-being reported a significantly higher level of eHealth literacy than those who had lower SSDM and poorer capability well-being. The regression models showed a positive relationship between eHealth literacy and both SSDM ($\beta$=.22; P<.001) and well-being ($\beta$=.26; P<.001) after adjusting for patients' demographic, socioeconomic status, lifestyle, and health status variables. Conclusions: This study showed that patients with a high level of eHealth literacy are more likely to experience optimal SDM and improved capability well-being. However, patients' depressive status may alter the relationship between eHealth literacy and SSDM. ", doi="10.2196/26721", url="https://www.jmir.org/2021/9/e26721", url="http://www.ncbi.nlm.nih.gov/pubmed/34559062" } @Article{info:doi/10.2196/30322, author="Ruhi, Umar and Majedi, Armin and Chugh, Ritesh", title="Sociotechnical Drivers and Barriers in the Consumer Adoption of Personal Health Records: Empirical Investigation", journal="JMIR Med Inform", year="2021", month="Sep", day="24", volume="9", number="9", pages="e30322", keywords="electronic personal health records", keywords="PHR", keywords="patient facing information systems", keywords="technology adoption", keywords="technology acceptance", keywords="consumer health informatics", abstract="Background: Increasingly popular in the health care domain, electronic personal health records (PHRs) have the potential to foster engagement toward improving health outcomes, achieving efficiencies in care, and reducing costs. Despite the touted benefits of PHRs, their uptake is lackluster, with low adoption rates. Objective: This paper reports findings from an empirical investigation of the sociotechnical factors affecting the adoption of PHRs. Methods: A research model comprising personal and technological determinants of PHR adoption was developed and validated in this study. Demographic, technographic, and psychographic data pertaining to the use of PHRs were collected through a web-based questionnaire for past, current, and potential users. Partial least squares-based structural equation modeling was used to estimate a structural model of cognitive and affective factors impacting intentions to use PHRs. Results: The analysis revealed that in addition to the expected positive impact of a PHR system's usefulness and usability, system integration also positively affects consumers' intention to adopt. The results also suggest that higher levels of perceived usability and integration do not translate into higher levels of perceived usefulness. The study also highlights the importance of subjective norms, technology awareness, and technology anxiety as direct antecedents of the intention to adopt PHRs. The differential effects of the adoption factors are also discussed. Conclusions: We hope that our study will contribute to the understanding of consumer adoption of PHRs and help improve the design and delivery of consumer-centric health care technologies. After discussing the implications for research, we provide suggestions and guidelines for PHR technology developers and constituents in the health care delivery chain. ", doi="10.2196/30322", url="https://medinform.jmir.org/2021/9/e30322", url="http://www.ncbi.nlm.nih.gov/pubmed/34343106" } @Article{info:doi/10.2196/24671, author="Perez-Ramos, G. Jose and McIntosh, Scott and Barrett, S. Emily and Velez Vega, M. Carmen and Dye, D. Timothy", title="Attitudes Toward the Environment and Use of Information and Communication Technologies to Address Environmental Health Risks in Marginalized Communities: Prospective Cohort Study", journal="J Med Internet Res", year="2021", month="Sep", day="23", volume="23", number="9", pages="e24671", keywords="community engagement", keywords="environmental health risk", keywords="epidemiology", keywords="ICT", keywords="mHealth", keywords="mobile phone", keywords="Puerto Rico", abstract="Background: Information and communication technologies, including mobile health (mHealth), can help isolated communities address environmental health challenges. The Puerto Rican island of Culebra has faced multiple sociopolitical and economic factors that have distressed the island's environment and health. Culebrenses are technologically engaged and have demonstrated a use of technology that transcends socioeconomic barriers. As a result, technological interventions could potentially help manage environmental risks on the island. Objective: This study aims to test and evaluate the potential benefits of an mHealth tool, termed {\textexclamdown}mZAP! (Zonas, Acci{\'o}n y Protecci{\'o}n), for engaging communities with environmental risks through technology. Methods: Participants using {\textexclamdown}mZAP! (N=111) were surveyed. Bivariate analyses were used to examine associations of mHealth use with sociodemographics, technology use, an adapted environmental attitudes inventory, and the multidimensional health locus of control. Logistic regression was used to examine associations between attitudes toward environmental health risks and mHealth use. Results: Higher positive attitudes toward the environment were significantly associated with the use of {\textexclamdown}mZAP! (odds ratio 5.3, 95\% CI 1.6-17.0). Environmental attitudes were also associated with the multidimensional health locus of control powerful others subscale (P=.02), indicating that attitudes toward the environment become more negative as feelings controlled by others increase. Participants felt that the authorities would resolve the challenges (63/111, 56.7\%). Conclusions: Perceived lack of control could present barriers to collective actions to address salient environmental health challenges in communities. The ongoing dependency on government-based solutions to community problems is worrisome, especially after the hurricane experiences of 2017 (which may potentially continue to be an issue subsequent to the more recent 2020 earthquakes). ", doi="10.2196/24671", url="https://www.jmir.org/2021/9/e24671", url="http://www.ncbi.nlm.nih.gov/pubmed/34554103" } @Article{info:doi/10.2196/19896, author="Oktay, Alperen Liam and Abuelgasim, Eyad and Abdelwahed, Aida and Houbby, Nour and Lampridou, Smaragda and Normahani, Pasha and Peters, Nicholas and Jaffer, Usman", title="Factors Affecting Engagement in Web-Based Health Care Patient Information: Narrative Review of the Literature", journal="J Med Internet Res", year="2021", month="Sep", day="23", volume="23", number="9", pages="e19896", keywords="patient education", keywords="web-based health information", keywords="internet", keywords="patient engagement", keywords="mobile phone", abstract="Background: Web-based content is rapidly becoming the primary source of health care information. There is a pressing need for web-based health care content to not only be accurate but also be engaging. Improved engagement of people with web-based health care content has the potential to inform as well as influence behavioral change to enable people to make better health care choices. The factors associated with better engagement with web-based health care content have previously not been considered. Objective: The aims of this study are to identify the factors that affect engagement with web-based health care content and develop a framework to be considered when creating such content. Methods: A comprehensive search of the PubMed and MEDLINE database was performed from January 1, 1946, to January 5, 2020. The reference lists of all included studies were also searched. The Medical Subject Headings database was used to derive the following keywords: ``patient information,'' ``online,'' ``internet,'' ``web,'' and ``content.'' All studies in English pertaining to the factors affecting engagement in web-based health care patient information were included. No restrictions were set on the study type. Analysis of the themes arising from the results was performed using inductive content analysis. Results: The search yielded 814 articles, of which 56 (6.9\%) met our inclusion criteria. The studies ranged from observational and noncontrolled studies to quasi-experimental studies. Overall, there was significant heterogeneity in the types of interventions and outcome assessments, which made quantitative assessment difficult. Consensus among all authors of this study resulted in six categories that formed the basis of a framework to assess the factors affecting engagement in web-based health care content: easy to understand, support, adaptability, accessibility, visuals and content, and credibility and completeness. Conclusions: There is a paucity of high-quality data relating to the factors that improve the quality of engagement with web-based health care content. Our framework summarizes the reported studies, which may be useful to health care content creators. An evaluation of the utility of web-based content to engage users is of significant importance and may be accessible through tools such as the Net Promoter score. Web 3.0 technology and development of the field of psychographics for health care offer further potential for development. Future work may also involve improvement of the framework through a co-design process. ", doi="10.2196/19896", url="https://www.jmir.org/2021/9/e19896", url="http://www.ncbi.nlm.nih.gov/pubmed/34554104" } @Article{info:doi/10.2196/28976, author="H{\"o}rhammer, Iiris and Kujala, Sari and Hilama, Pirjo and Heponiemi, Tarja", title="Building Primary Health Care Personnel's Support for a Patient Portal While Alleviating eHealth-Related Stress: Survey Study", journal="J Med Internet Res", year="2021", month="Sep", day="22", volume="23", number="9", pages="e28976", keywords="patient portal", keywords="implementation", keywords="adoption", keywords="health care personnel", keywords="eHealth-related stress", abstract="Background: Health care personnel's (HCP) engagement in patient portal implementation is necessary in embedding the use of the portal in everyday practices of a health care organization. While portal implementation may raise personnel's positive expectations of the benefits in patient care, it is often also stressful for them due to increased workloads and disruptions in clinical workflows. An understanding of social and technical factors that build personnel's support for patient portal implementation and alleviate their eHealth-related stress is therefore needed to realize the full potential of portals. Objective: The aim of this study was to explore the influence of managerial implementation practices, information technology (IT) usability, and personnel's eHealth competences on support for patient portal implementation and eHealth-related stress among primary HCP. Methods: The data were collected through a survey of 919 members at 2 health organizations in Finland. Linear and logistic regression models were fitted to study the associations between the variables. Results: Professionals' eHealth competence ($\beta$=.15, P<.001), usability ($\beta$=.11, P<.001), and implementation practices ($\beta$=.07, P<.001) were positively associated with professionals' support and negatively associated with professionals eHealth-related stress ($\beta$=?.07, P=.010; $\beta$=?.27, P<.001; and $\beta$=?.14, P<.001, respectively). Professionals' support was associated with their promotion of the portal to the patients (odds ratio 1.22, 95\% CI 1.07-1.40). Conclusions: The adoption of appropriate implementation practices and the usability of the technology can build personnel's support for a patient portal and alleviate their stress related to eHealth. Personnel's support is manifested in their promotion of the portal to patients. Health care managers are encouraged to consider the usability of the technology and the good implementation practices, such as proper informing, engagement of the personnel in planning the services, and allocation of resources to improve eHealth competence, as prerequisites for meaningful and sustainable use of patient portals. ", doi="10.2196/28976", url="https://www.jmir.org/2021/9/e28976", url="http://www.ncbi.nlm.nih.gov/pubmed/34550087" } @Article{info:doi/10.2196/28501, author="Yin, Rong and Law, Katherine and Neyens, David", title="Examining How Internet Users Trust and Access Electronic Health Record Patient Portals: Survey Study", journal="JMIR Hum Factors", year="2021", month="Sep", day="21", volume="8", number="3", pages="e28501", keywords="internet", keywords="consumer health informatics", keywords="patient portal", keywords="participatory medicine", keywords="electronic health records", keywords="logistic model", keywords="surveys", keywords="questionnaires", abstract="Background: Electronic health record (EHR) patient portals are designed to provide medical health records to patients. Using an EHR portal is expected to contribute to positive health outcomes and facilitate patient-provider communication. Objective: Our objective was to examine how portal users report using their portals and the factors associated with obtaining health information from the internet. We also examined the desired portal features, factors impacting users' trust in portals, and barriers to using portals. Methods: An internet-based survey study was conducted using Amazon Mechanical Turk. All the participants were adults in the United States who used patient portals. The survey included questions about how the participants used their portals, what factors acted as barriers to using their portals, and how they used and how much they trusted other web-based health information sources as well as their portals. A logistic regression model was used to examine the factors influencing the participants' trust in their portals. Additionally, the desired features and design characteristics were identified to support the design of future portals. Results: A total of 394 participants completed the survey. Most of the participants were less than 35 years old (212/394, 53.8\%), with 36.3\% (143/394) aged between 35 and 55 years, and 9.9\% (39/394) aged above 55 years. Women accounted for 48.5\% (191/394) of the survey participants. More than 78\% (307/394) of the participants reported using portals at least monthly. The most common portal features used were viewing lab results, making appointments, and paying bills. Participants reported some barriers to portal use including data security and limited access to the internet. The results of a logistic regression model used to predict the trust in their portals suggest that those comfortable using their portals (odds ratio [OR] 7.97, 95\% CI 1.11-57.32) thought that their portals were easy to use (OR 7.4, 95\% CI 1.12-48.84), and frequent internet users (OR 43.72, 95\% CI 1.83-1046.43) were more likely to trust their portals. Participants reporting that the portals were important in managing their health (OR 28.13, 95\% CI 5.31-148.85) and that their portals were a valuable part of their health care (OR 6.75, 95\% CI 1.51-30.11) were also more likely to trust their portals. Conclusions: There are several factors that impact the trust of EHR patient portal users in their portals. Designing easily usable portals and considering these factors may be the most effective approach to improving trust in patient portals. The desired features and usability of portals are critical factors that contribute to users' trust in EHR portals. ", doi="10.2196/28501", url="https://humanfactors.jmir.org/2021/3/e28501", url="http://www.ncbi.nlm.nih.gov/pubmed/34546182" } @Article{info:doi/10.2196/28123, author="Shpigelman, Noa Carmit and Tal, Amir and Zisman-Ilani, Yaara", title="Digital Community Inclusion of Individuals With Serious Mental Illness: A National Survey to Map Digital Technology Use and Community Participation Patterns in the Digital Era", journal="JMIR Ment Health", year="2021", month="Sep", day="21", volume="8", number="9", pages="e28123", keywords="mobile health", keywords="technology", keywords="digital community participation", keywords="digital community inclusion", keywords="serious mental illness", keywords="recovery", abstract="Background: Despite the growing interest in developing and using mobile health (mHealth) and digital technologies in mental health, little is known about the scope and nature of virtual community inclusion. Objective: The overarching goal of this study was to understand and conceptualize virtual community inclusion of individuals with serious mental illness (SMI). Specific objectives of this study were as follows: (1) mapping the prevalence, trends, and experiences related to mHealth and digital technology use among individuals with SMI; (2) comparing patterns of technology use by individuals with and those without SMI; and (3) examining whether use of mHealth and digital technologies predicts recovery among individuals with SMI. Methods: A web-based survey of technology use and virtual participation was developed and distributed among adults with and those without SMI via social media, national email discussion lists, nonprofit organizations, and advocacy groups. Results: A total of 381 adults aged 18 years or older participated in the survey, of whom 199 (52\%) identified as having a SMI. Participants with SMI reported significantly greater access to technology and significantly fewer days of face-to-face participation in community activities than those without SMI. Among participants with SMI, greater technology use was positively associated with positive emotions and significantly predicted recovery. Conclusions: This study is the first to explore, map, and conceptualize virtual community inclusion among adults with SMI. Our findings indicate a gap in the literature and research on community inclusion and participation, and emphasize the need for virtual community inclusion, particularly during the COVID-19 pandemic and its future implications. ", doi="10.2196/28123", url="https://mental.jmir.org/2021/9/e28123", url="http://www.ncbi.nlm.nih.gov/pubmed/34546177" } @Article{info:doi/10.2196/28797, author="Ingle, Pilar M. and Valdovinos, Cristina and Ford, L. Kelsey and Zhou, Shou and Bull, Sheana and Gornail, Starlynne and Zhang, Xuhong and Moore, Susan and Portz, Jennifer", title="Patient Portals to Support Palliative and End-of-Life Care: Scoping Review", journal="J Med Internet Res", year="2021", month="Sep", day="16", volume="23", number="9", pages="e28797", keywords="patient portal", keywords="electronic health record", keywords="digital health", keywords="palliative care", keywords="end-of-life care", abstract="Background: Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. Objective: This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. Methods: We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6\%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19). Results: In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults. Conclusions: PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes. ", doi="10.2196/28797", url="https://www.jmir.org/2021/9/e28797", url="http://www.ncbi.nlm.nih.gov/pubmed/34528888" } @Article{info:doi/10.2196/26317, author="LaMonica, M. Haley and Roberts, E. Anna and Lee, Yeeun Grace and Davenport, A. Tracey and Hickie, B. Ian", title="Privacy Practices of Health Information Technologies: Privacy Policy Risk Assessment Study and Proposed Guidelines", journal="J Med Internet Res", year="2021", month="Sep", day="16", volume="23", number="9", pages="e26317", keywords="privacy", keywords="mental health", keywords="technology", keywords="digital tools", keywords="smartphone", keywords="apps", abstract="Background: Along with the proliferation of health information technologies (HITs), there is a growing need to understand the potential privacy risks associated with using such tools. Although privacy policies are designed to inform consumers, such policies have consistently been found to be confusing and lack transparency. Objective: This study aims to present consumer preferences for accessing privacy information; develop and apply a privacy policy risk assessment tool to assess whether existing HITs meet the recommended privacy policy standards; and propose guidelines to assist health professionals and service providers with understanding the privacy risks associated with HITs, so that they can confidently promote their safe use as a part of care. Methods: In phase 1, participatory design workshops were conducted with young people who were attending a participating headspace center, their supportive others, and health professionals and service providers from the centers. The findings were knowledge translated to determine participant preferences for the presentation and availability of privacy information and the functionality required to support its delivery. Phase 2 included the development of the 23-item privacy policy risk assessment tool, which incorporated material from international privacy literature and standards. This tool was then used to assess the privacy policies of 34 apps and e-tools. In phase 3, privacy guidelines, which were derived from learnings from a collaborative consultation process with key stakeholders, were developed to assist health professionals and service providers with understanding the privacy risks associated with incorporating HITs as a part of clinical care. Results: When considering the use of HITs, the participatory design workshop participants indicated that they wanted privacy information to be easily accessible, transparent, and user-friendly to enable them to clearly understand what personal and health information will be collected and how these data will be shared and stored. The privacy policy review revealed consistently poor readability and transparency, which limited the utility of these documents as a source of information. Therefore, to enable informed consent, the privacy guidelines provided ensure that health professionals and consumers are fully aware of the potential for privacy risks in using HITs to support health and well-being. Conclusions: A lack of transparency in privacy policies has the potential to undermine consumers' ability to trust that the necessary measures are in place to secure and protect the privacy of their personal and health information, thus precluding their willingness to engage with HITs. The application of the privacy guidelines will improve the confidence of health professionals and service providers in the privacy of consumer data, thus enabling them to recommend HITs to provide or support care. ", doi="10.2196/26317", url="https://www.jmir.org/2021/9/e26317", url="http://www.ncbi.nlm.nih.gov/pubmed/34528895" } @Article{info:doi/10.2196/14908, author="Lu, Xinyi and Zhang, Runtong", title="Association Between eHealth Literacy in Online Health Communities and Patient Adherence: Cross-sectional Questionnaire Study", journal="J Med Internet Res", year="2021", month="Sep", day="13", volume="23", number="9", pages="e14908", keywords="online health communities", keywords="OHCs", keywords="eHealth literacy", keywords="patient adherence", keywords="health information", keywords="physician-patient communication", abstract="Background: eHealth literacy is significantly associated with patients' online information behavior, physician-patient relationship, patient adherence, and health outcomes. As an important product of the internet, online health communities (OHCs) can help redistribute idle medical resources, increase medical resource utilization, and improve patient adherence. However, studies on eHealth literacy in OHCs are limited. Therefore, this study examined patients' eHealth literacy regarding health information--seeking behavior and physician-patient communication in OHCs. Objective: This study aimed to investigate the association between eHealth literacy in OHCs and patient adherence by employing social cognitive theory. Methods: This was an empirical study, in which a research model consisting of 1 independent variable (patients' eHealth literacy), 3 mediators (physician-patient communication in OHCs, patient health information--seeking behavior in OHCs, and patients' perceived quality of health information in OHCs), 1 dependent variable (patient adherence), and 4 control variables (age, gender, living area, and education level) was established to examine the associations. Multi-item scales were used to measure variables. An anonymous online survey involving 560 participants was conducted through Chinese OHCs in July 2018 to collect data. Partial least squares and structural equation modeling were adopted to analyze data and test hypotheses. Results: The survey response rate was 79.6\% (446/560). The reliability, convergent validity, and discriminant validity were acceptable. Age, gender, living area, and education level were positively associated with patient adherence, and gender was positively associated with physician-patient communication and patients' perceived quality of internet health information in OHCs. Patients' eHealth literacy was positively associated with patient adherence through the mediations of physician-patient communication, internet health information--seeking behavior, and perceived quality of internet health information in OHCs. Conclusions: Results indicate that physician-patient communication, internet health information--seeking behavior, and the perceived quality of internet health information are significantly associated with improving patient adherence via a guiding of eHealth literacy in OHCs. These findings suggest that physicians can understand and guide their patients' eHealth literacy to improve treatment efficiency; OHCs' operators should this strengthen the management of information quality, develop user-friendly features, and minimize the gap between the actual and perceived information quality. ", doi="10.2196/14908", url="https://www.jmir.org/2021/9/e14908", url="http://www.ncbi.nlm.nih.gov/pubmed/34515638" } @Article{info:doi/10.2196/28116, author="Greshake Tzovaras, Bastian and Senabre Hidalgo, Enric and Alexiou, Karolina and Baldy, Lukaz and Morane, Basile and Bussod, Ilona and Fribourg, Melvin and Wac, Katarzyna and Wolf, Gary and Ball, Mad", title="Using an Individual-Centered Approach to Gain Insights From Wearable Data in the Quantified Flu Platform: Netnography Study", journal="J Med Internet Res", year="2021", month="Sep", day="10", volume="23", number="9", pages="e28116", keywords="symptom tracking", keywords="COVID-19", keywords="wearable devices", keywords="self-tracking", keywords="citizen science", keywords="netnographic analysis", keywords="cocreation", abstract="Background: Wearables have been used widely for monitoring health in general, and recent research results show that they can be used to predict infections based on physiological symptoms. To date, evidence has been generated in large, population-based settings. In contrast, the Quantified Self and Personal Science communities are composed of people who are interested in learning about themselves individually by using their own data, which are often gathered via wearable devices. Objective: This study aims to explore how a cocreation process involving a heterogeneous community of personal science practitioners can develop a collective self-tracking system for monitoring symptoms of infection alongside wearable sensor data. Methods: We engaged in a cocreation and design process with an existing community of personal science practitioners to jointly develop a working prototype of a web-based tool for symptom tracking. In addition to the iterative creation of the prototype (started on March 16, 2020), we performed a netnographic analysis to investigate the process of how this prototype was created in a decentralized and iterative fashion. Results: The Quantified Flu prototype allowed users to perform daily symptom reporting and was capable of presenting symptom reports on a timeline together with resting heart rates, body temperature data, and respiratory rates measured by wearable devices. We observed a high level of engagement; over half of the users (52/92, 56\%) who engaged in symptom tracking became regular users and reported over 3 months of data each. Furthermore, our netnographic analysis highlighted how the current Quantified Flu prototype was a result of an iterative and continuous cocreation process in which new prototype releases sparked further discussions of features and vice versa. Conclusions: As shown by the high level of user engagement and iterative development process, an open cocreation process can be successfully used to develop a tool that is tailored to individual needs, thereby decreasing dropout rates. ", doi="10.2196/28116", url="https://www.jmir.org/2021/9/e28116", url="http://www.ncbi.nlm.nih.gov/pubmed/34505836" } @Article{info:doi/10.2196/21974, author="Ouyang, Wei and Xie, Wenzhao and Xin, Zirui and He, Haiyan and Wen, Tingxiao and Peng, Xiaoqing and Dai, Pingping and Yuan, Yifeng and Liu, Fei and Chen, Yang and Luo, Aijing", title="Evolutionary Overview of Consumer Health Informatics: Bibliometric Study on the Web of Science from 1999 to 2019", journal="J Med Internet Res", year="2021", month="Sep", day="9", volume="23", number="9", pages="e21974", keywords="consumer health informatics", keywords="consumer health information", keywords="thematic evaluation", keywords="co-word analysis", keywords="informatics", keywords="SciMAT", abstract="Background: Consumer health informatics (CHI) originated in the 1990s. With the rapid development of computer and information technology for health decision making, an increasing number of consumers have obtained health-related information through the internet, and CHI has also attracted the attention of an increasing number of scholars. Objective: The aim of this study was to analyze the research themes and evolution characteristics of different study periods and to discuss the dynamic evolution path and research theme rules in a time-series framework from the perspective of a strategy map and a data flow in CHI. Methods: The Web of Science core collection database of the Institute for Scientific Information was used as the data source to retrieve relevant articles in the field of CHI. SciMAT was used to preprocess the literature data and construct the overlapping map, evolution map, strategic diagram, and cluster network characterized by keywords. Besides, a bibliometric analysis of the general characteristics, the evolutionary characteristics of the theme, and the evolutionary path of the theme was conducted. Results: A total of 986 articles were obtained after the retrieval, and 931 articles met the document-type requirement. In the past 21 years, the number of articles increased every year, with a remarkable growth after 2015. The research content in 4 different study periods formed the following 38 themes: patient education, medicine, needs, and bibliographic database in the 1999-2003 study period; world wide web, patient education, eHealth, patients, medication, terminology, behavior, technology, and disease in the 2004-2008 study period; websites, information seeking, physicians, attitudes, technology, risk, food labeling, patient, strategies, patient education, and eHealth in the 2009-2014 study period; and electronic medical records, health information seeking, attitudes, health communication, breast cancer, health literacy, technology, natural language processing, user-centered design, pharmacy, academic libraries, costs, internet utilization, and online health information in the 2015-2019 study period. Besides, these themes formed 10 evolution paths in 3 research directions: patient education and intervention, consumer demand attitude and behavior, and internet information technology application. Conclusions: Averaging 93 publications every year since 2015, CHI research is in a rapid growth period. The research themes mainly focus on patient education, health information needs, health information search behavior, health behavior intervention, health literacy, health information technology, eHealth, and other aspects. Patient education and intervention research, consumer demand, attitude, and behavior research comprise the main theme evolution path, whose evolution process has been relatively stable. This evolution path will continue to become the research hotspot in this field. Research on the internet and information technology application is a secondary theme evolution path with development potential. ", doi="10.2196/21974", url="https://www.jmir.org/2021/9/e21974", url="http://www.ncbi.nlm.nih.gov/pubmed/34499042" } @Article{info:doi/10.2196/26189, author="Carini, Elettra and Villani, Leonardo and Pezzullo, Maria Angelo and Gentili, Andrea and Barbara, Andrea and Ricciardi, Walter and Boccia, Stefania", title="The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review", journal="J Med Internet Res", year="2021", month="Sep", day="8", volume="23", number="9", pages="e26189", keywords="digital health", keywords="patient portal", keywords="health outcomes", keywords="patient satisfaction", keywords="patient attitudes", keywords="health service research", keywords="health care efficiency", abstract="Background: Patient portals are becoming increasingly popular worldwide even though their impact on individual health and health system efficiency is still unclear. Objective: The aim of this systematic review was to summarize evidence on the impact of patient portals on health outcomes and health care efficiency, and to examine user characteristics, attitudes, and satisfaction. Methods: We searched the PubMed and Web of Science databases for articles published from January 1, 2013, to October 31, 2019. Eligible studies were primary studies reporting on the impact of patient portal adoption in relation to health outcomes, health care efficiency, and patient attitudes and satisfaction. We excluded studies where portals were not accessible for patients and pilot studies, with the exception of articles evaluating patient attitudes. Results: Overall, 3456 records were screened, and 47 articles were included. Among them, 11 studies addressed health outcomes reporting positive results, such as better monitoring of health status, improved patient-doctor interaction, and improved quality of care. Fifteen studies evaluated the impact of digital patient portals on the utilization of health services with mixed results. Patient characteristics were described in 32 studies, and it was reported that the utilization rate usually increases with age and female gender. Finally, 30 studies described attitudes and defined the main barriers (concerns about privacy and data security, and lack of time) and facilitators (access to clinical data and laboratory results) to the use of a portal. Conclusions: Evidence regarding health outcomes is generally favorable, and patient portals have the potential to enhance the doctor-patient relationship, improve health status awareness, and increase adherence to therapy. It is still unclear whether the use of patient portals improves health service utilization and efficiency. ", doi="10.2196/26189", url="https://www.jmir.org/2021/9/e26189", url="http://www.ncbi.nlm.nih.gov/pubmed/34494966" } @Article{info:doi/10.2196/29018, author="Park, Sulki and Kum, Hye-Chung and Morrisey, A. Michael and Zheng, Qi and Lawley, A. Mark", title="Adherence to Telemonitoring Therapy for Medicaid Patients With Hypertension: Case Study", journal="J Med Internet Res", year="2021", month="Sep", day="6", volume="23", number="9", pages="e29018", keywords="telemedicine", keywords="hypertension", keywords="Medicaid", keywords="blood pressure", keywords="pulse", keywords="telemonitoring", keywords="mobile phone", abstract="Background: Almost 50\% of the adults in the United States have hypertension. Although clinical trials indicate that home blood pressure monitoring can be effective in managing hypertension, the reported results might not materialize in practice because of patient adherence problems. Objective: The aims of this study are to characterize the adherence of Medicaid patients with hypertension to daily telemonitoring, identify the impacts of adherence reminder calls, and investigate associations with blood pressure control. Methods: This study targeted Medicaid patients with hypertension from the state of Texas. A total of 180 days of blood pressure and pulse data in 2016-2018 from a telemonitoring company were analyzed for mean transmission rate and mean blood pressure change. The first 30 days of data were excluded because of startup effects. The protocols required the patients to transmit readings by a specified time daily. Patients not transmitting their readings received an adherence reminder call to troubleshoot problems and encourage transmission. The patients were classified into adherent and nonadherent cohorts; adherent patients were those who transmitted data on at least 80\% of the days. Results: The mean patient age was 73.2 (SD 11.7) years. Of the 823 patients, 536 (65.1\%) were women, and 660 (80.2\%) were urban residents. The adherent cohort (475/823, 57.7\%) had mean transmission rates of 74.9\% before the adherence reminder call and 91.3\% after the call, whereas the nonadherent cohort (348/823, 42.3\%) had mean transmission rates of 39\% and 58\% before and after the call, respectively. From month 1 to month 5, the transmission rates dropped by 1.9\% and 10.2\% for the adherent and nonadherent cohorts, respectively. The systolic and diastolic blood pressure values improved by an average of 2.2 and 0.7 mm Hg (P<.001 and P=.004), respectively, for the adherent cohort during the study period, whereas only the systolic blood pressure value improved by an average of 1.6 mm Hg (P=.02) for the nonadherent cohort. Conclusions: Although we found that patients can achieve high levels of adherence, many experience adherence problems. Although adherence reminder calls help, they may not be sufficient. Telemonitoring lowered blood pressure, as has been observed in clinical trials. Furthermore, blood pressure control was positively associated with adherence. ", doi="10.2196/29018", url="https://www.jmir.org/2021/9/e29018", url="http://www.ncbi.nlm.nih.gov/pubmed/34486977" } @Article{info:doi/10.2196/21817, author="Worrall, P. Amy and Kelly, Claire and O'Neill, Aine and O'Doherty, Murray and Kelleher, Eoin and Cushen, Marie Anne and McNally, Cora and McConkey, Samuel and Glavey, Siobhan and Lavin, Michelle and de Barra, Eoghan", title="Online Search Trends Influencing Anticoagulation in Patients With COVID-19: Observational Study", journal="JMIR Form Res", year="2021", month="Aug", day="31", volume="5", number="8", pages="e21817", keywords="COVID-19", keywords="coronavirus", keywords="online search engines", keywords="anticoagulation", keywords="thrombosis", keywords="online influence", keywords="health information dissemination", abstract="Background: Early evidence of COVID-19--associated coagulopathy disseminated rapidly online during the first months of 2020, followed by clinical debate about how best to manage thrombotic risks in these patients. The rapid online spread of case reports was followed by online interim guidelines, discussions, and worldwide online searches for further information. The impact of global online search trends and online discussion on local approaches to coagulopathy in patients with COVID-19 has not been studied. Objective: The goal of this study was to investigate the relationship between online search trends using Google Trends and the rate of appropriate venous thromboembolism (VTE) prophylaxis and anticoagulation therapy in a cohort of patients with COVID-19 admitted to a tertiary hospital in Ireland. Methods: A retrospective audit of anticoagulation therapy and VTE prophylaxis among patients with COVID-19 who were admitted to a tertiary hospital was conducted between February 29 and May 31, 2020. Worldwide Google search trends of the term ``COVID-19'' and anticoagulation synonyms during this time period were determined and correlated against one another using a Spearman correlation. A P value of <.05 was considered significant, and analysis was completed using Prism, version 8 (GraphPad). Results: A statistically significant Spearman correlation (P<.001, r=0.71) was found between the two data sets, showing an increase in VTE prophylaxis in patients with COVID-19 with increasing online searches worldwide. This represents a proxy for online searches and discussion, dissemination of information, and Google search trends relating to COVID-19 and clotting risk, in particular, which correlated with an increasing trend of providing thromboprophylaxis and anticoagulation therapy to patients with COVID-19 in our tertiary center. Conclusions: We described a correlation of local change in clinical practice with worldwide online dialogue and digital search trends that influenced individual clinicians, prior to the publication of formal guidelines or a local quality-improvement intervention. ", doi="10.2196/21817", url="https://formative.jmir.org/2021/8/e21817", url="http://www.ncbi.nlm.nih.gov/pubmed/34292865" } @Article{info:doi/10.2196/28169, author="Beatty, L. Alexis and Peyser, D. Noah and Butcher, E. Xochitl and Carton, W. Thomas and Olgin, E. Jeffrey and Pletcher, J. Mark and Marcus, M. Gregory", title="The COVID-19 Citizen Science Study: Protocol for a Longitudinal Digital Health Cohort Study", journal="JMIR Res Protoc", year="2021", month="Aug", day="30", volume="10", number="8", pages="e28169", keywords="COVID-19", keywords="digital technology", keywords="participant engagement", keywords="electronic health records", keywords="mobile app", keywords="mHealth", keywords="digital health", abstract="Background: The COVID-19 pandemic has catalyzed a global public response and innovation in clinical study methods. Objective: The COVID-19 Citizen Science study was designed to generate knowledge about participant-reported COVID-19 symptoms, behaviors, and disease occurrence. Methods: COVID-19 Citizen Science is a longitudinal cohort study launched on March 26, 2020, on the Eureka Research Platform. This study illustrates important advances in digital clinical studies, including entirely digital study participation, targeted recruitment strategies, electronic consent, recurrent and time-updated assessments, integration with smartphone-based measurements, analytics for recruitment and engagement, connection with partner studies, novel engagement strategies such as participant-proposed questions, and feedback in the form of real-time results to participants. Results: As of February 2021, the study has enrolled over 50,000 participants. Study enrollment and participation are ongoing. Over the lifetime of the study, an average of 59\% of participants have completed at least one survey in the past 4 weeks. Conclusions: Insights about COVID-19 symptoms, behaviors, and disease occurrence can be drawn through digital clinical studies. Continued innovation in digital clinical study methods represents the future of clinical research. International Registered Report Identifier (IRRID): DERR1-10.2196/28169 ", doi="10.2196/28169", url="https://www.researchprotocols.org/2021/8/e28169", url="http://www.ncbi.nlm.nih.gov/pubmed/34310336" } @Article{info:doi/10.2196/28045, author="van Rijt, Mattheus Antonius and Hulter, Pauline and Weggelaar-Jansen, Marie Anne and Ahaus, Kees and Pluut, Bettine", title="Mental Health Care Professionals' Appraisal of Patients' Use of Web-Based Access to Their Electronic Health Record: Qualitative Study", journal="J Med Internet Res", year="2021", month="Aug", day="27", volume="23", number="8", pages="e28045", keywords="patient portals", keywords="eHealth", keywords="mental health care professionals", keywords="mental health", keywords="eMental health", keywords="mental health care", keywords="patient-accessible", keywords="electronic health records", keywords="Open Notes", keywords="normalization process theory", keywords="NPT", abstract="Background: Patients in a range of health care sectors can access their medical health records using a patient portal. In mental health care, the use of patient portals among mental health care professionals remains low. Mental health care professionals are concerned that patient access to electronic health records (EHRs) will negatively affect the patient's well-being and privacy as well as the professional's own workload. Objective: This study aims to provide insights into the appraisal work of mental health care professionals to assess and understand patient access to their EHRs through a patient portal. Methods: We conducted a qualitative study that included 10 semistructured interviews (n=11) and a focus group (n=10). Participants in both the interviews and the focus group were mental health care professionals from different professional backgrounds and staff employees (eg, team leaders and communication advisors). We collected data on their opinions and experiences with the recently implemented patient portal and their attempts to modify work practices. Results: Our study provides insights into mental health care professionals' appraisal work to assess and understand patient access to the EHR through a patient portal. A total of four topics emerged from our data analysis: appraising the effect on the patient-professional relationship, appraising the challenge of sharing and registering delicate information, appraising patient vulnerability, and redefining consultation routines and registration practices. Conclusions: Mental health care professionals struggle with the effects of web-based patient access and are searching for the best ways to modify their registration and consultation practices. Our participants seem to appraise the effects of web-based patient access individually. Our study signals the lack of systematization and communal appraisal. It also suggests various solutions to the challenges faced by mental health care professionals. To optimize the effects of web-based patient access to EHRs, mental health care professionals need to be involved in the process of developing, implementing, and embedding patient portals. ", doi="10.2196/28045", url="https://www.jmir.org/2021/8/e28045", url="http://www.ncbi.nlm.nih.gov/pubmed/34448705" } @Article{info:doi/10.2196/26395, author="Qin, Lei and Zhang, Xiaomei and Wu, Anlin and Miser, S. James and Liu, Yen-Lin and Hsu, C. Jason and Shia, Ben-Chang and Ye, Linglong", title="Association Between Social Media Use and Cancer Screening Awareness and Behavior for People Without a Cancer Diagnosis: Matched Cohort Study", journal="J Med Internet Res", year="2021", month="Aug", day="27", volume="23", number="8", pages="e26395", keywords="social media", keywords="cancer screening awareness", keywords="cancer screening behavior", keywords="gender-specific effects", keywords="propensity-score matching", keywords="general population", abstract="Background: The use of social media in communications regarding cancer prevention is rapidly growing. However, less is known about the general population's social media use related to cancer screening awareness and behavior for different cancers. Objective: We aimed to examine the relationship between social media use and cancer screening awareness and behavior among people without a cancer diagnosis. Methods: Data were collected from the Health Information National Trends Survey 5 Cycle 1 to 3 in the United States (n=12,227). Our study included 10,124 participants without a cancer diagnosis and 3 measures of screening awareness (those who had heard of hepatitis C virus [HCV], human papillomavirus [HPV], and the HPV vaccine) and 4 measures of behavior (those who had prostate-specific antigen tests, Papanicolaou tests for cervical cancer, as well as breast cancer and colon cancer tests). Propensity-score matching was conducted to adjust for the sociodemographic variables between the social media user and nonuser participants. Multivariable logistic regression was used to assess the association of social media use by gender. Jackknife replicate weights were incorporated into the analyses. Results: Of the 3794 matched participants, 1861 (57.6\% weighted) were male, and the mean age was 55.5 (SD 0.42) years. Compared to social media nonusers, users were more likely to have heard of HCV (adjusted odds ratio [aOR]=2.27, 95\% CI, 1.29-3.98 and aOR=2.86, 95\% CI, 1.51-5.40, for male and female users, respectively) and HPV (aOR=1.82, 95\% CI, 1.29-2.58 and aOR=2.35, 95\% CI, 1.65-3.33, for male and female users, respectively). In addition, female users were more likely to have heard of the HPV vaccine (aOR=2.06, 95\% CI, 1.41-3.00). No significant associations were found between social media use and prostate-specific antigen tests in males, Papanicolaou tests and breast cancer tests in females, or colon cancer tests in both male and female users. Conclusions: While social media services can potentially promote cancer screening awareness in the general population, but they did not improve screening behavior after adjusting for socioeconomic status. These findings strengthened our understanding of social media use in targeting health communications for different cancers. ", doi="10.2196/26395", url="https://www.jmir.org/2021/8/e26395", url="http://www.ncbi.nlm.nih.gov/pubmed/34448708" } @Article{info:doi/10.2196/19820, author="Kinney, P. Aaron and Sankaranarayanan, Balaji", title="Effects of Patient Portal Use on Patient Satisfaction: Survey and Partial Least Squares Analysis", journal="J Med Internet Res", year="2021", month="Aug", day="27", volume="23", number="8", pages="e19820", keywords="patient portal", keywords="patient satisfaction", keywords="gratification", keywords="health self-awareness", keywords="post-adoptive use", keywords="health perceptions", abstract="Background: With digital delivery of health care services gaining prominence, patient portals have become a mainstay of many health care organizations. Despite the importance of patient portals, inconclusive data exist regarding the effect of patient portal use on patient satisfaction. Objective: The aim of this study is to understand the relationship between the postadoptive use of patient portals and patient satisfaction outcomes. Methods: Postadoptive use of patient portals has a positive relationship with the 3 dimensions of patient satisfaction, mediated by gratification, health self-awareness, and health perceptions. A total of 504 valid patient portal user responses were collected, and partial least squares analysis was performed to analyze the data. Results: Patient satisfaction was captured using three dimensions: care team interaction, atmosphere, and instruction effectiveness. The results show that postadoptive use of patient portals has a positive influence on all 3 dimensions of patient satisfaction through the mediating variables of gratification, health self-awareness, and health perceptions. Specifically, postadoptive use had significant positive influence on gratification, health self-awareness, and health perceptions. Each of the 3 patient perceptions had significant positive influence on all 3 dimensions of patient satisfaction: care team interaction, atmosphere, and instruction effectiveness. Specifically, our model explained 31.8\% of the care team interaction, 40.6\% of the atmosphere, and 39.1\% of the instruction effectiveness. Conclusions: Our model shows that patient portal use can influence patient satisfaction through the mediating effects of gratification, health self-awareness, and health perception. Patient satisfaction is an important outcome for health care organizations. Therefore, by promoting effective patient portal use and fostering patient perceptions, health care organizations can improve patient satisfaction. ", doi="10.2196/19820", url="https://www.jmir.org/2021/8/e19820", url="http://www.ncbi.nlm.nih.gov/pubmed/34448712" } @Article{info:doi/10.2196/26162, author="Aggarwal, Ravi and Farag, Soma and Martin, Guy and Ashrafian, Hutan and Darzi, Ara", title="Patient Perceptions on Data Sharing and Applying Artificial Intelligence to Health Care Data: Cross-sectional Survey", journal="J Med Internet Res", year="2021", month="Aug", day="26", volume="23", number="8", pages="e26162", keywords="artificial intelligence", keywords="patient perception", keywords="data sharing", keywords="health data", keywords="privacy", abstract="Background: Considerable research is being conducted as to how artificial intelligence (AI) can be effectively applied to health care. However, for the successful implementation of AI, large amounts of health data are required for training and testing algorithms. As such, there is a need to understand the perspectives and viewpoints of patients regarding the use of their health data in AI research. Objective: We surveyed a large sample of patients for identifying current awareness regarding health data research, and for obtaining their opinions and views on data sharing for AI research purposes, and on the use of AI technology on health care data. Methods: A cross-sectional survey with patients was conducted at a large multisite teaching hospital in the United Kingdom. Data were collected on patient and public views about sharing health data for research and the use of AI on health data. Results: A total of 408 participants completed the survey. The respondents had generally low levels of prior knowledge about AI. Most were comfortable with sharing health data with the National Health Service (NHS) (318/408, 77.9\%) or universities (268/408, 65.7\%), but far fewer with commercial organizations such as technology companies (108/408, 26.4\%). The majority endorsed AI research on health care data (357/408, 87.4\%) and health care imaging (353/408, 86.4\%) in a university setting, provided that concerns about privacy, reidentification of anonymized health care data, and consent processes were addressed. Conclusions: There were significant variations in the patient perceptions, levels of support, and understanding of health data research and AI. Greater public engagement levels and debates are necessary to ensure the acceptability of AI research and its successful integration into clinical practice in future. ", doi="10.2196/26162", url="https://www.jmir.org/2021/8/e26162", url="http://www.ncbi.nlm.nih.gov/pubmed/34236994" } @Article{info:doi/10.2196/23367, author="Lange-Drenth, Lukas and Schulz, Holger and Endsin, Gero and Bleich, Christiane", title="Patients With Cancer Searching for Cancer- or Health-Specific Web-Based Information: Performance Test Analysis", journal="J Med Internet Res", year="2021", month="Aug", day="16", volume="23", number="8", pages="e23367", keywords="telemedicine", keywords="eHealth", keywords="eHealth literacy", keywords="digital literacy", keywords="internet", keywords="web-based", keywords="health information", keywords="health education", keywords="cancer", keywords="mobile phone", abstract="Background: Searching the internet for cancer-related information helps patients with cancer satisfy their unmet information needs and empowers them to play a more active role in the management of their disease. However, to benefit from the search, patients need a sufficient level of skill to search, select, appraise, and apply web-based health information. Objective: We aim to study the operational, navigational, information, and evaluation skills and problems of patients with cancer performing cancer-related search tasks using the internet. Methods: A total of 21 patients with cancer were recruited during their stay at the rehabilitation clinic for oncological rehabilitation. Participants performed eight cancer-related search tasks using the internet. The participants were asked to think aloud while performing the tasks, and the screen activities were recorded. The types and frequencies of performance problems were identified and coded into categories following an inductive coding process. In addition, the performance and strategic characteristics of task execution were summarized descriptively. Results: All participants experienced problems or difficulties in executing the tasks, and a substantial percentage of tasks (57/142, 40.1\%) could not be completed successfully. The participants' performance problems were coded into four categories, namely operating the computer and web browser, navigating and orientating, using search strategies, and evaluating the relevance and reliability of web-based information. The most frequent problems occurred in the third and fourth categories. A total of 90\% (19/21) of participants used nontask-related search terms or nonspecific search terms. A total of 95\% (20/21) of participants did not control for the source or topicality of the information found. In addition, none of the participants verified the information on 1 website with that on another website for each task. Conclusions: A substantial group of patients with cancer did not have the necessary skills to benefit from cancer-related internet searches. Future interventions are needed to support patients in the development of sufficient internet-searching skills, focusing particularly on information and evaluation skills. ", doi="10.2196/23367", url="https://www.jmir.org/2021/8/e23367", url="http://www.ncbi.nlm.nih.gov/pubmed/34398801" } @Article{info:doi/10.2196/22391, author="Jonnerg{\aa}rd, Karin and Petersson, Lena and Erlingsd{\'o}ttir, Gudbj{\"o}rg", title="Communicating the Implementation of Open Notes to Health Care Professionals: Mixed Methods Study", journal="JMIR Med Inform", year="2021", month="Aug", day="16", volume="9", number="8", pages="e22391", keywords="implementation", keywords="health care", keywords="electronic health records", keywords="communication strategy", keywords="eHealth", keywords="telemedicine", keywords="PAEHRs", keywords="Open Notes", keywords="professions", keywords="EHR", abstract="Background: The literature on how to communicate reform in organizations has mainly focused on levels of hierarchy and has largely ignored the variety of professions that may be found within an organization. In this study, we focus on the relationship between media type and professional responses. Objective: The objective of this study was to investigate whether and how belonging to a profession influences the choice of communication media and the perception of information when a technical innovation is implemented in a health care setting. Methods: This study followed a mixed methods design based on observations and participant studies, as well as a survey of professionals in psychiatric health care in Sweden. The $\chi$2 test was used to detect differences in perceptions between professional groups. Results: The use of available communication media differed among professions. These differences seem to be related to the status attached to each profession. The sense-making of the information appears to be similar among the professions, but is based on their traditional professional norms rather than on reflection on the reform at hand. Conclusions: When communicating about the implementation of a new technology, the choice of media and the message need to be attuned to the employees in both hierarchical and professional terms. This also applies to situations where professional employees are only indirectly affected by the implementation. A differentiated communication strategy is preferred over a downward cascade of information. ", doi="10.2196/22391", url="https://medinform.jmir.org/2021/8/e22391", url="http://www.ncbi.nlm.nih.gov/pubmed/34398794" } @Article{info:doi/10.2196/23765, author="Nwokeji, Uchenna and Spaulding, M. Erin and Shan, Rongzi and Turkson-Ocran, Ruth-Alma and Baptiste, Diana and Koirala, Binu and Plante, B. Timothy and Martin, S. Seth and Commodore-Mensah, Yvonne", title="Health Information Technology Use Among Persons With Self-reported Atherosclerotic Cardiovascular Disease: Analysis of the 2011-2018 National Health Interview Survey", journal="J Med Internet Res", year="2021", month="Aug", day="13", volume="23", number="8", pages="e23765", keywords="health information technology", keywords="cardiovascular disease", keywords="digital health", keywords="eHealth", keywords="mobile phone", abstract="Background: Atherosclerotic cardiovascular disease (ASCVD) is the leading cause of morbidity and mortality in the United States. Health information technologies (HITs) have recently emerged as a viable intervention to mitigate the burden of ASCVD. Approximately 60\% of US adults report searching the internet for health information; however, previous research has not examined the prevalence of general technology or HIT use among adults with and without ASCVD. In addition, social determinants in HIT use among adults with ASCVD are not well understood. Objective: The aim of this study was to evaluate the prevalence and social determinants of HIT use among US adults with versus without self-reported ASCVD. Methods: We pooled cross-sectional data from the 2011-2018 National Health Interview Survey (NHIS) to examine the general technology and HIT use among adults aged ?18 years with and without self-reported ASCVD (coronary heart disease, stroke, or both). General technology use was defined as mobile phone ownership, internet use, and computer use. HIT use was defined as looking up health information on the internet, filling a web-based prescription, scheduling a medical appointment on the internet, communicating with a health care provider by email, or using web-based group chats to learn about health topics. We evaluated sociodemographic differences in HIT use among respondents by using Poisson regression. Analyses were weighted according to NHIS standards. Results: A total sample of 256,117 individuals were included, of which 2194 (0.9\%) reported prior ASCVD. Among adults with prior ASCVD, the mean age was 70.6 (SD 11.5) years, and 47.4\% (1048/2194) of the adults were females. General technology use differed between participants with and without prior ASCVD, with 36.0\% (614/1826) and 76.2\% (157,642/213,816) indicating internet usage and 24.6\% (374/1575) and 60.7\% (107,742/184,557) indicating using a computer every day, respectively. Similarly, adults with ASCVD were less likely to use HIT than those without ASCVD (515/2194, 25.1\% vs 123,966/253,923, 51.0\%; P<.001). Among adults with prior ASCVD, social determinants that were associated with HIT use included younger age, higher education, higher income, being employed, and being married. Conclusions: HIT use was low among adults with a history of ASCVD, which may represent a barrier to delivering care via emerging HIT. Given the associations with social determinants such as income, education, and employment, targeted strategies and policies are needed to eliminate barriers to impact HIT usage. ", doi="10.2196/23765", url="https://www.jmir.org/2021/8/e23765", url="http://www.ncbi.nlm.nih.gov/pubmed/34397391" } @Article{info:doi/10.2196/28748, author="Noser, Anne Elizabeth and Zhang, Jing and Rahbar, Hossein Mohammad and Sharrief, Zarinah Anjail and Barreto, David Andrew and Shaw, Sandi and Grotta, Charles James and Savitz, Isaac Sean and Ifejika, Lotea Nneka", title="Leveraging Multimedia Patient Engagement to Address Minority Cerebrovascular Health Needs: Prospective Observational Study", journal="J Med Internet Res", year="2021", month="Aug", day="13", volume="23", number="8", pages="e28748", keywords="environmental justice", keywords="urban flooding", keywords="stroke", keywords="community engagement", keywords="education", keywords="health disparities", abstract="Background: Social inequities affecting minority populations after Hurricane Katrina led to an expansion of environmental justice literature. In August 2017, Hurricane Harvey rainfall was estimated as a 3000- to 20,000-year flood event, further affecting minority populations with disproportionate stroke prevalence. The Stomp Out Stroke initiative leveraged multimedia engagement, creating a patient-centered cerebrovascular health intervention. Objective: This study aims to address social inequities in cerebrovascular health through the identification of race- or ethnicity-specific health needs and the provision of in-person stroke prevention screening during two community events (May 2018 and May 2019). Methods: Stomp Out Stroke recruitment took place through internet-based channels (websites and social networking). Exclusively through web registration, Stomp Out Stroke participants (aged >18 years) detailed sociodemographic characteristics, family history of stroke, and stroke survivorship. Participant health interests were compared by race or ethnicity using Kruskal-Wallis or chi-square test at an $\alpha$=.05. A Bonferroni-corrected P value of .0083 was used for multiple comparisons. Results: Stomp Out Stroke registrants (N=1401) were 70\% (973/1390) female (median age 45 years) and largely self-identified as members of minority groups: 32.05\% (449/1401) Hispanic, 25.62\% (359/1401) African American, 13.63\% (191/1401) Asian compared with 23.63\% (331/1401) non-Hispanic White. Stroke survivors comprised 11.55\% (155/1401) of our population. A total of 124 stroke caregivers participated. Approximately 36.81\% (493/1339) of participants had a family history of stroke. African American participants were most likely to have Medicare or Medicaid insurance (84/341, 24.6\%), whereas Hispanic participants were most likely to be uninsured (127/435, 29.2\%). Hispanic participants were more likely than non-Hispanic White participants to obtain health screenings (282/449, 62.8\% vs 175/331, 52.9\%; P=.03). Asian (105/191, 54.9\%) and African American (201/359, 55.9\%) participants were more likely to request stroke education than non-Hispanic White (138/331, 41.6\%) or Hispanic participants (193/449, 42.9\%). African American participants were more likely to seek overall health education than non-Hispanic White participants (166/359, 46.2\% vs 108/331, 32.6\%; P=.002). Non-Hispanic White participants (48/331, 14.5\%) were less likely to speak to health care providers than African American (91/359, 25.3\%) or Asian participants (54/191, 28.3\%). During the 2018 and 2019 events, 2774 health screenings were completed across 12 hours, averaging four health screenings per minute. These included blood pressure (1031/2774, 37.16\%), stroke risk assessment (496/2774, 17.88\%), bone density (426/2774, 15.35\%), carotid ultrasound (380/2774, 13.69\%), BMI (182/2774, 6.56\%), serum lipids (157/2774, 5.65\%), and hemoglobin A1c (102/2774, 3.67\%). Twenty multimedia placements using the Stomp Out Stroke webpage, social media, \#stompoutstroke, television, iQ radio, and web-based news reached approximately 849,731 people in the Houston area. Conclusions: Using a combination of internet-based recruitment, registration, and in-person assessments, Stomp Out Stroke identified race- or ethnicity-specific health care needs and provided appropriate screenings to minority populations at increased risk of urban flooding and stroke. This protocol can be replicated in Southern US Stroke Belt cities with similar flood risks. ", doi="10.2196/28748", url="https://www.jmir.org/2021/8/e28748", url="http://www.ncbi.nlm.nih.gov/pubmed/34397385" } @Article{info:doi/10.2196/27764, author="Janssen, L. Sharon and Venema-Taat, Nynke and Medlock, Stephanie", title="Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study", journal="J Med Internet Res", year="2021", month="Aug", day="11", volume="23", number="8", pages="e27764", keywords="patient portal", keywords="access to information", keywords="barriers and facilitators", keywords="survey", keywords="qualitative", keywords="open notes", keywords="mixed methods", keywords="electronic health record", abstract="Background: The past few years have seen an increase in interest in sharing visit notes with patients. Sharing visit notes with patients is also known as ``open notes.'' Shared notes are seen as beneficial for patient empowerment and communication, but concerns have also been raised about potential negative effects. Understanding barriers is essential to successful organizational change, but most published studies on the topic come from countries where shared notes are incentivized or legally required. Objective: We aim to gather opinions about sharing outpatient clinic visit notes from patients and hospital physicians in the Netherlands, where there is currently no policy or incentive plan for shared visit notes. Methods: This multimethodological study was conducted in an academic and a nonacademic hospital in the Netherlands. We conducted a survey of patients and doctors in March-April 2019. In addition to the survey, we conducted think-aloud interviews to gather more insight into the reasons behind participants' answers. We surveyed 350 physicians and 99 patients, and think-aloud interviews were conducted with an additional 13 physicians and 6 patients. Results: Most patients (81/98, 77\%) were interested in viewing their visit notes, whereas most physicians (262/345, 75.9\%) were opposed to allowing patients to view their visit notes. Most patients (54/90, 60\%) expected the notes to be written in layman's terms, but most physicians (193/321, 60.1\%) did not want to change their writing style to make it more understandable for patients. Doctors raised concerns that reading the note would make patients feel confused and anxious, that the patient would not understand the note, and that shared notes would result in more documentation time or losing a way to communicate with colleagues. Interviews also revealed concerns about documenting sensitive topics such as suspected abuse and unlikely but worrisome differential diagnoses. Physicians also raised concerns that documenting worrisome thoughts elsewhere in the record would result in fragmentation of the patient record. Patients were uncertain if they would understand the notes (46/90, 51\%) and, in interviews, raised questions about security and privacy. Physicians did anticipate some benefits, such as the patients remembering the visit better, shared decision-making, and keeping patients informed, but 24\% (84/350) indicated that they saw no benefit. Patients anticipated that they would remember the visit better, feel more in control, and better understand their health. Conclusions: Dutch patients are interested in shared visit notes, but physicians have many concerns that should be addressed if shared notes are pursued. Physicians' concerns should be addressed before shared notes are implemented. In hospitals where shared notes are implemented, the effects should be monitored (objectively, if possible) to determine whether the concerns raised by our participants have actualized into problems and whether the anticipated benefits are being realized. ", doi="10.2196/27764", url="https://www.jmir.org/2021/8/e27764", url="http://www.ncbi.nlm.nih.gov/pubmed/34383660" } @Article{info:doi/10.2196/29271, author="Trojan, Andreas and Leuthold, Nicolas and Thomssen, Christoph and Rody, Achim and Winder, Thomas and Jakob, Andreas and Egger, Claudine and Held, Ulrike and Jackisch, Christian", title="The Effect of Collaborative Reviews of Electronic Patient-Reported Outcomes on the Congruence of Patient- and Clinician-Reported Toxicity in Cancer Patients Receiving Systemic Therapy: Prospective, Multicenter, Observational Clinical Trial", journal="J Med Internet Res", year="2021", month="Aug", day="5", volume="23", number="8", pages="e29271", keywords="cancer", keywords="consilium", keywords="app", keywords="eHealth", keywords="ePRO", keywords="CTCAE", keywords="congruency", keywords="patient-reported", keywords="symptoms", abstract="Background: Electronic patient-reported outcomes (ePRO) are a relatively novel form of data and have the potential to improve clinical practice for cancer patients. In this prospective, multicenter, observational clinical trial, efforts were made to demonstrate the reliability of patient-reported symptoms. Objective: The primary objective of this study was to assess the level of agreement $\kappa$ between symptom ratings by physicians and patients via a shared review process in order to determine the future reliability and utility of self-reported electronic symptom monitoring. Methods: Patients receiving systemic therapy in a (neo-)adjuvant or noncurative intention setting captured ePRO for 52 symptoms over an observational period of 90 days. At 3-week intervals, randomly selected symptoms were reviewed between the patient and physician for congruency on severity of the grading of adverse events according to the Common Terminology Criteria of Adverse Events (CTCAE). The patient-physician agreement for the symptom review was assessed via Cohen kappa ($\kappa$), through which the interrater reliability was calculated. Chi-square tests were used to determine whether the patient-reported outcome was different among symptoms, types of cancer, demographics, and physicians' experience. Results: Among the 181 patients (158 women and 23 men; median age 54.4 years), there was a fair scoring agreement ($\kappa$=0.24; 95\% CI 0.16-0.33) for symptoms that were entered 2 to 4 weeks before the intended review (first rating) and a moderate agreement ($\kappa$=0.41; 95\% CI 0.34-0.48) for symptoms that were entered within 1 week of the intended review (second rating). However, the level of agreement increased from moderate (first rating, $\kappa$=0.43) to substantial (second rating, $\kappa$=0.68) for common symptoms of pain, fever, diarrhea, obstipation, nausea, vomiting, and stomatitis. Similar congruency levels of ratings were found for the most frequently entered symptoms (first rating: $\kappa$=0.42; second rating: $\kappa$=0.65). The symptom with the lowest agreement was hair loss ($\kappa$=--0.05). With regard to the latency of symptom entry into the review, hardly any difference was demonstrated between symptoms that were entered from days 1 to 3 and from days 4 to 7 before the intended review ($\kappa$=0.40 vs $\kappa$=0.39, respectively). In contrast, for symptoms that were entered 15 to 21 days before the intended review, no congruency was demonstrated ($\kappa$=--0.15). Congruency levels seemed to be unrelated to the type of cancer, demographics, and physicians' review experience. Conclusions: The shared monitoring and review of symptoms between patients and clinicians has the potential to improve the understanding of patient self-reporting. Our data indicate that the integration of ePRO into oncological clinical research and continuous clinical practice provides reliable information for self-empowerment and the timely intervention of symptoms. Trial Registration: ClinicalTrials.gov NCT03578731; https://clinicaltrials.gov/ct2/show/NCT03578731 ", doi="10.2196/29271", url="https://www.jmir.org/2021/8/e29271", url="http://www.ncbi.nlm.nih.gov/pubmed/34383675" } @Article{info:doi/10.2196/24927, author="H{\"a}gglund, Maria and Scandurra, Isabella", title="User Evaluation of the Swedish Patient Accessible Electronic Health Record: System Usability Scale", journal="JMIR Hum Factors", year="2021", month="Jul", day="27", volume="8", number="3", pages="e24927", keywords="usability", keywords="system usability scale", keywords="evaluation", keywords="patient accessible electronic health records", keywords="open notes", keywords="patient portals", abstract="Background: Transparency is increasingly called for in health care, especially, when it comes to patients' access to their electronic health records. In Sweden, the e-service Journalen is a national patient accessible electronic health record (PAEHR), accessible online via the national patient portal. User characteristics and perceived benefits of using a PAEHR influence behavioral intention for use and adoption, but poor usability that increases the effort expectancy can have a negative impact. It is, therefore, of interest to explore how users of the PAEHR Journalen perceive its usability and usefulness. Objective: The aim of this study was to explore how the users of the Swedish PAEHR experience the usability of the system and to identify differences in these experiences based on the level of transparency of the region. Methods: A survey study was conducted to elicit opinions and experiences of patients using Journalen. The data were collected from June to October 2016. The questionnaire included questions regarding the usability of the system from the System Usability Scale (SUS). The SUS analysis was the focus of this paper. Analysis was performed on different levels: nationally looking at the whole data set and breaking it down by focusing on 2 different regions to explore differences in experienced usability based on the level of transparency. Results: During the survey period, 423,141 users logged into Journalen, of which 2587 unique users completed the survey (response rate 0.61\%). The total mean score for all respondents to the SUS items was 79.81 (SD 14.25), which corresponds to a system with good usability. To further explore whether the level of transparency in a region would affect the user's experience of the usability of the system, we analyzed the 2 regions with the most respondents: Region Uppsala (the first to launch, with a high level of transparency), and Region Sk{\aa}ne (an early implementer, with a low level of transparency at the time of the survey). Of the participants who responded to at least 1 SUS statement, 520 stated that they had received care in Region Sk{\aa}ne, whereas 331 participants had received care in Region Uppsala. Uppsala's mean SUS score was 80.71 (SD 13.41), compared with Sk{\aa}ne's mean of 79.37 (SD 13.78). Conclusions: The Swedish national PAEHR Journalen has a reasonably good usability (mean SUS score 79.81, SD 14.25); however, further research into more specific usability areas are needed to ensure usefulness and ease of use in the future. A somewhat higher SUS score for the region with high transparency compared with the region with low transparency could indicate a relationship between the perceived usability of a PAEHR and the level of transparency offered, but further research on the relationship between transparency and usability is required. ", doi="10.2196/24927", url="https://humanfactors.jmir.org/2021/3/e24927", url="http://www.ncbi.nlm.nih.gov/pubmed/34313596" } @Article{info:doi/10.2196/27484, author="Shojaie, Danielle and Hoffman, S. Aubri and Amaku, Ruth and Cabanillas, E. Maria and Sosa, Ann Julie and Waguespack, G. Steven and Zafereo, E. Mark and Hu, I. Mimi and Grubbs, E. Elizabeth", title="Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid", journal="JMIR Form Res", year="2021", month="Jul", day="16", volume="5", number="7", pages="e27484", keywords="patient decision aids", keywords="decision support techniques", keywords="oncology", keywords="medullary thyroid cancer", keywords="targeted therapy", keywords="clinical trial", keywords="mobile phone", abstract="Background: In cancers with a chronic phase, patients and family caregivers face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate the consideration of patients' informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers have expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families to discuss these decisions. To ensure that these tools are effective, usable, and understandable, studies are needed to identify patients', families', and providers' decision-making needs and optimal design strategies for a web-based patient decision aid. Objective: Following the international guidelines for the development of a web-based patient decision aid, the objectives of this study are to engage potential users to guide development; review the existing literature and available tools; assess users' decision-making experiences, needs, and design recommendations; and identify shared decision-making approaches to address each need. Methods: This study used the decisional needs assessment approach, which included creating a stakeholder advisory panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified current decision-making pathways, unmet decision-making needs, and decision support strategies for meeting each need. Results: The stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included 2 systematic reviews, 9 additional papers, and multiple educational websites, but none of these met the criteria for a patient decision aid. Patients and family members (n=54) emphasized the need for plain language (46/54, 85\%), shared decision making (45/54, 83\%), and help with family discussions (39/54, 72\%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n=10) reported needing interventions that address misinformation (9/10, 90\%), foster realistic expectations (9/10, 90\%), and address mistrust in clinical trials (5/10, 50\%). Additional needs included provider tools that support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored to (64/64, 100\%) and delivered on a hospital website (53/64, 83\%), focuses on quality of life (45/64, 70\%), and provides step-by-step guidance (43/64, 67\%). The study team identified best practices to meet each need, which are presented in the proposed decision support design guide. Conclusions: Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids that provide tailored support over time and explicitly address uncertainty, quality of life, realistic expectations, and effects on families are needed. ", doi="10.2196/27484", url="https://formative.jmir.org/2021/7/e27484", url="http://www.ncbi.nlm.nih.gov/pubmed/34269691" } @Article{info:doi/10.2196/25992, author="Yin, Kathleen and Jung, Joshua and Coiera, Enrico and Ho, K. Kenneth W. and Vagholkar, Sanjyot and Blandford, Ann and Rapport, Frances and Lau, S. Annie Y.", title="How Patient Work Changes Over Time for People With Multimorbid Type 2 Diabetes: Qualitative Study", journal="J Med Internet Res", year="2021", month="Jul", day="15", volume="23", number="7", pages="e25992", keywords="patient work", keywords="self-management", keywords="diabetes", keywords="chronic conditions", keywords="chronic illness trajectory", keywords="consumer informatics", abstract="Background: The experiences of patients change throughout their illness trajectory and differ according to their medical history, but digital support tools are often designed for one specific moment in time and do not change with the patient as their health state changes. This presents a fragmented support pattern where patients have to move from one app to another as they move between health states, and some subpopulations of patients do not have their needs addressed at all. Objective: This study aims to investigate how patient work evolves over time for those living with type 2 diabetes mellitus and chronic multimorbidity, and explore the implications for digital support system design. Methods: In total, 26 patients with type 2 diabetes mellitus and chronic multimorbidity were recruited. Each interview was conducted twice, and interviews were transcribed and analyzed according to the Chronic Illness Trajectory Model. Results: Four unique illness trajectories were identified with different patient work goals and needs: living with stable chronic conditions involves patients seeking to make patient work as routinized and invisible as possible; dealing with cycles of acute or crisis episodes included heavily multimorbid patients who sought support with therapy adherence; responding to unstable changes described patients currently experiencing rapid health changes and increasing patient work intensity; and coming back from crisis focused on patients coping with a loss of normalcy. Conclusions: Patient work changes over time based on the experiences of the individual, and its timing and trajectory need to be considered when designing digital support interventions. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2018-022163 ", doi="10.2196/25992", url="https://www.jmir.org/2021/7/e25992", url="http://www.ncbi.nlm.nih.gov/pubmed/34264193" } @Article{info:doi/10.2196/29614, author="Viberg Johansson, Jennifer and Bentzen, Beate Heidi and Shah, Nisha and Haraldsd{\'o}ttir, Eik and J{\'o}nsd{\'o}ttir, Andrea Gu?bj{\"o}rg and Kaye, Jane and Mascalzoni, Deborah and Veldwijk, Jorien", title="Preferences of the Public for Sharing Health Data: Discrete Choice Experiment", journal="JMIR Med Inform", year="2021", month="Jul", day="5", volume="9", number="7", pages="e29614", keywords="preferences", keywords="discrete choice experiment", keywords="health data", keywords="secondary use", keywords="willingness to share", abstract="Background: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people's preferences for sharing digital health data. Objective: The aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts. Methods: Respondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates. Results: In the final analysis, we used 37.83\% (1967/5199) questionnaires. All attributes influenced the respondents' willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27\% for class 1, 32\% for class 2, 23\% for class 3, and 18\% for class 4. The uptake probability varied between 14\% and 85\%, depending on the least to most preferred combination of levels. Conclusions: Respondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism. ", doi="10.2196/29614", url="https://medinform.jmir.org/2021/7/e29614", url="http://www.ncbi.nlm.nih.gov/pubmed/36260402" } @Article{info:doi/10.2196/25266, author="Schmit, Cason and Giannouchos, Theodoros and Ramezani, Mahin and Zheng, Qi and Morrisey, A. Michael and Kum, Hye-Chung", title="US Privacy Laws Go Against Public Preferences and Impede Public Health and Research: Survey Study", journal="J Med Internet Res", year="2021", month="Jul", day="5", volume="23", number="7", pages="e25266", keywords="privacy", keywords="law", keywords="medical informatics", keywords="conjoint analysis", keywords="surveys and questionnaires", keywords="public health", keywords="information dissemination", keywords="health policy", keywords="public policy", keywords="big data", abstract="Background: Reaping the benefits from massive volumes of data collected in all sectors to improve population health, inform personalized medicine, and transform biomedical research requires the delicate balance between the benefits and risks of using individual-level data. There is a patchwork of US data protection laws that vary depending on the type of data, who is using it, and their intended purpose. Differences in these laws challenge big data projects using data from different sources. The decisions to permit or restrict data uses are determined by elected officials; therefore, constituent input is critical to finding the right balance between individual privacy and public benefits. Objective: This study explores the US public's preferences for using identifiable data for different purposes without their consent. Methods: We measured data use preferences of a nationally representative sample of 504 US adults by conducting a web-based survey in February 2020. The survey used a choice-based conjoint analysis. We selected choice-based conjoint attributes and levels based on 5 US data protection laws (Health Insurance Portability and Accountability Act, Family Educational Rights and Privacy Act, Privacy Act of 1974, Federal Trade Commission Act, and the Common Rule). There were 72 different combinations of attribute levels, representing different data use scenarios. Participants were given 12 pairs of data use scenarios and were asked to choose the scenario they were the most comfortable with. We then simulated the population preferences by using the hierarchical Bayes regression model using the ChoiceModelR package in R. Results: Participants strongly preferred data reuse for public health and research than for profit-driven, marketing, or crime-detection activities. Participants also strongly preferred data use by universities or nonprofit organizations over data use by businesses and governments. Participants were fairly indifferent about the different types of data used (health, education, government, or economic data). Conclusions: Our results show a notable incongruence between public preferences and current US data protection laws. Our findings appear to show that the US public favors data uses promoting social benefits over those promoting individual or organizational interests. This study provides strong support for continued efforts to provide safe access to useful data sets for research and public health. Policy makers should consider more robust public health and research data use exceptions to align laws with public preferences. In addition, policy makers who revise laws to enable data use for research and public health should consider more comprehensive protection mechanisms, including transparent use of data and accountability. ", doi="10.2196/25266", url="https://www.jmir.org/2021/7/e25266", url="http://www.ncbi.nlm.nih.gov/pubmed/36260399" } @Article{info:doi/10.2196/23670, author="de Looper, Melanie and van Weert, M. Julia C. and Schouten, C. Barbara and Bolle, Sifra and Belgers, J. Eric H. and Eddes, H. Eric and Smets, A. Ellen M.", title="The Influence of Online Health Information Seeking Before a Consultation on Anxiety, Satisfaction, and Information Recall, Mediated by Patient Participation: Field Study", journal="J Med Internet Res", year="2021", month="Jul", day="5", volume="23", number="7", pages="e23670", keywords="online health seeking", keywords="patients", keywords="aging", keywords="patient participation", keywords="memory", keywords="anxiety", keywords="patient reported outcomes", keywords="consultation", keywords="health communication", keywords="cancer", abstract="Background: Today, many cancer patients engage in online health information seeking (OHIS). However, little is known about how patients differ in their OHIS levels. In addition, OHIS might influence patient participation during a consultation with a physician, which might mediate the effects on patient outcomes. Objective: The aim of this study is twofold: first, to provide insight into which personal characteristics and psychosocial factors affect patients' OHIS levels and, second, to test the hypothesis that the effects of OHIS on patient outcomes are mediated by patient participation during the consultation. Methods: Patient participation was operationalized in terms of patients' absolute word count; the relative contribution of the patient, compared with the health care provider; and the number of questions and assertions expressed during the consultation. The patient outcomes measured were anxiety after the consultation, satisfaction with the consultation, and information recall. Participants in this study were patients recently diagnosed with colorectal cancer recruited from 6 hospitals in the Netherlands (n=90). Data were collected using questionnaires and audio-recorded consultations of patients with health care providers before their surgery. Results: The results showed that younger patients, higher educated patients, patients with a monitoring coping style, and patients who experienced more cancer-related stress engaged more in OHIS. In turn, OHIS was related to patient participation in terms of the patient's absolute word count but not to the relative contribution to the consultation or expressing questions and assertions. We did not find a relation between OHIS and anxiety and OHIS and recall mediated by patient participation. However, we found that patients' absolute word count significantly mediated the positive association between OHIS and patients' satisfaction with the consultation. Conclusions: Results indicate positive implications of OHIS for patients' care experience and, therefore, the importance of helping patients engage in OHIS. However, the results also suggest that OHIS is only successful in increasing a single aspect of patient participation, which might explain the absence of relations with anxiety and recall. The results suggest that more beneficial effects on patient outcomes may be achieved when health care providers support patients in OHIS. ", doi="10.2196/23670", url="https://www.jmir.org/2021/7/e23670", url="http://www.ncbi.nlm.nih.gov/pubmed/34255657" } @Article{info:doi/10.2196/22650, author="Hughes, D. Shana and Koester, A. Kimberly and Engesaeth, Edvard and Hawkins, V. Merissa and Grant, M. Robert", title="Human Enough: A Qualitative Study of Client Experience With Internet-Based Access to Pre-exposure Prophylaxis", journal="J Med Internet Res", year="2021", month="Jul", day="5", volume="23", number="7", pages="e22650", keywords="telehealth", keywords="internet", keywords="HIV", keywords="pre-exposure prophylaxis (PrEP)", keywords="client/user experience", keywords="qualitative", abstract="Background: HIV pre-exposure prophylaxis (PrEP) is a way to prevent HIV infection using antiretroviral medications. However, common barriers to PrEP engagement include lack of access to prescribers; discomfort seeking sexual health services; and racism, homophobia, and transphobia in medical contexts. Key populations (eg, communities of color, young men who have sex with men, and transgender women) are underrepresented in terms of PrEP uptake in the United States. Nurx is an innovative company that has offered internet-based access to PrEP since 2016. Objective: In this study, in partnership with Nurx, we aim to explore clients' experiences of digital PrEP access---including the difference made by the telehealth format---and to understand whether Nurx helped reduce barriers to PrEP. Methods: Electronic chart review and semistructured interviews were conducted with 31 PrEP requesters from California, Florida, Illinois, and New York. Interviews were recorded, transcribed, and subjected to inductive and deductive thematic analysis. Results: Some interviewees reported initial skepticism about whether a web-based PrEP service could be legitimate or feasible. Despite this, most clients were effusive about their eventual Nurx experience, and many reported that Nurx eased barriers to PrEP access through the availability of knowledgeable, willing prescribers and minimizing embarrassment and discrimination. Our analysis suggests Nurx produced satisfaction by achieving an acceptable balance between 2 client desires: efficiency and humanity. Efficiency encompasses the simplicity, speed, and convenience of obtaining PrEP, both regarding the Nurx process itself and in comparison with in-person encounters. Humanity covers clients' wish for personalized, responsive interaction and a feeling of connection or care. Nurx's messaging platform was crucial to manifesting these qualities and was largely interpreted through the familiar frame of texting. Clients conceived efficiency and humanity as inversely related in a commercial enterprise and varied in the particular balance they felt was optimal. Those who wished for slightly more humanity than the service afforded used the concept of a trade-off to explain why Nurx remained appealing. Conclusions: Our findings augment evidence that internet-based PrEP provision can broaden access to this HIV prevention strategy. This important finding, notwithstanding a few provisos, merits mention. Telehealth, as practiced by Nurx, was still dependent on culturally competent medical providers as system inputs, and the very technology used to overcome access barriers (ie, the internet) generated new hurdles for some clients. Furthermore, clients did not interpret Nurx in a vacuum: their past experiences and the social and structural context mattered. Finally, only granular inquiry revealed precisely how Nurx satisfied clients whose experiences and preferences fell within a particular range. Extrapolating from this, we urge scholars not to fetishize technological solutions but rather to interrogate the ways in which any intervention's design works for certain kinds of patients. ", doi="10.2196/22650", url="https://www.jmir.org/2021/7/e22650/", url="http://www.ncbi.nlm.nih.gov/pubmed/36256828" } @Article{info:doi/10.2196/26030, author="Haun, N. Jolie and Paykel, Jacquelyn and Melillo, Christine", title="Transforming Health and Resiliency Through Integration of Values-based Experiences: Implementation of an Electronic Evidence-based Whole Health Clinical Program", journal="JMIR Form Res", year="2021", month="Jun", day="29", volume="5", number="6", pages="e26030", keywords="virtual care", keywords="group medical appointment", keywords="complementary and integrative health", keywords="veteran", keywords="implementation", abstract="Background: Complementary and integrative health (CIH) is the foundation of the Department of Veterans Affairs (VA) Whole Health System program (WH), including Transforming Health and Resiliency through Integration of Values-based Experiences (THRIVE). The global COVID-19 pandemic prompted an urgent need to provide services such as THRIVE while following guidelines for social distancing. Objective: The objective of this paper was to describe the systematic implementation of THRIVE using an electronic delivery model. Methods: The study involved an observational clinical program implementation project using the RE-AIM framework to contextualize the implementation strategies and results, and then the implementation of an electronically delivered CIH group medical appointment program (eTHRIVE). Results: Clinical staff transitioned to 100\% electronic delivery of the THRIVE curriculum using the new eTHRIVE delivery model. The current electronic delivery model, eTHRIVE, has effectively enrolled 10-12 veterans per cohort, with 8 cohorts, totaling 87 veterans to date. eTHRIVE attrition has been 6\% (5/87) since initiation. Conclusions: The current climate of the VA WH programmatic initiative combined with the public health needs during a global pandemic prompted the move of THRIVE program into an electronic format to broaden scalability and reach. ", doi="10.2196/26030", url="https://formative.jmir.org/2021/6/e26030", url="http://www.ncbi.nlm.nih.gov/pubmed/34184996" } @Article{info:doi/10.2196/27542, author="Yuwen, Weichao and Duran, Miriana and Tan, Minghui and Ward, M. Teresa and Cheng, Chieh Sunny and Ramirez, Magaly", title="Self-Care Needs and Technology Preferences Among Parents in Marginalized Communities: Participatory Design Study", journal="JMIR Pediatr Parent", year="2021", month="Jun", day="22", volume="4", number="2", pages="e27542", keywords="asthma", keywords="caregiving", keywords="self-care", keywords="parents", keywords="qualitative research", keywords="culturally appropriate technology", keywords="minority groups", keywords="marginalization", abstract="Background: Ten million parents provide unpaid care to children living with chronic conditions, such as asthma, and a high percentage of these parents are in marginalized communities, including racial and ethnic minority and low-income families. There is an urgent need to develop technology-enabled tailored solutions to support the self-care needs of these parents. Objective: This study aimed to use a participatory design approach to describe and compare Latino and non-Latino parents' current self-care practices, needs, and technology preferences when caring for children with asthma in marginalized communities. Methods: The participatory design approach was used to actively engage intended users in the design process and empower them to identify needs and generate design ideas to meet those needs. Results: Thirteen stakeholders participated in three design sessions. We described Latino and non-Latino parents' similarities in self-care practices and cultural-specific preferences. When coming up with ideas of technologies for self-care, non-Latino parents focused on improving caregiving stress through journaling, daily affirmations, and tracking feelings, while Latino parents focused more on relaxation and entertainment. Conclusions: Considerations need to be taken beyond language differences when developing technology-enabled interventions for diverse populations. The community partnership approach strengthened the study's inclusive design. ", doi="10.2196/27542", url="https://pediatrics.jmir.org/2021/2/e27542", url="http://www.ncbi.nlm.nih.gov/pubmed/34156343" } @Article{info:doi/10.2196/29314, author="Blease, Charlotte and Salmi, Liz and H{\"a}gglund, Maria and Wachenheim, Deborah and DesRoches, Catherine", title="COVID-19 and Open Notes: A New Method to Enhance Patient Safety and Trust", journal="JMIR Ment Health", year="2021", month="Jun", day="21", volume="8", number="6", pages="e29314", keywords="COVID-19", keywords="patient portals", keywords="electronic health records", keywords="patient safety", keywords="patient-centered care", doi="10.2196/29314", url="https://mental.jmir.org/2021/6/e29314", url="http://www.ncbi.nlm.nih.gov/pubmed/34081603" } @Article{info:doi/10.2196/26991, author="Stampe, Kathrine and Kishik, Sharon and M{\"u}ller, Dueholm Sune", title="Mobile Health in Chronic Disease Management and Patient Empowerment: Exploratory Qualitative Investigation Into Patient-Physician Consultations", journal="J Med Internet Res", year="2021", month="Jun", day="15", volume="23", number="6", pages="e26991", keywords="compliance", keywords="empowerment", keywords="mHealth", keywords="patient-physician consultation", keywords="power", abstract="Background: Chronic diseases often present severe consequences for those affected. The management and treatment of chronic diseases largely depend on patients' lifestyle choices and how they cope with the disease in their everyday lives. Accordingly, the ability of patients to self-manage diseases is a highly relevant topic. In relation to self-management, studies refer to patient empowerment as strengthening patients' voices and enabling them to assert control over their health and treatment. Mobile health (mHealth) provides cost-efficient means to support self-management and foster empowerment. Objective: There is a scarcity of research investigating how mHealth affects patient empowerment during patient-physician consultations. The objective of this study is to address this knowledge gap by investigating how mHealth affects consultations and patient empowerment. Methods: We relied on data from an ethnographic field study of 6 children and adolescents diagnosed with juvenile idiopathic arthritis. We analyzed 6 patient-physician consultations and drew on Michel Foucault's concepts of power and power technology. Results: Our results suggest that the use of mHealth constitutes practices that structure the consultations around deviations and noncompliant patient behavior. Our analysis shows how mHealth is used to discipline patients and correct their behavior. We argue that the use of mHealth during consultations may unintentionally lead to relevant aspects of patients' lives related to the disease being ignored; thus, inadvertently, patients' voices may be silenced. Conclusions: Our results show that concrete uses of mHealth may conflict with extant literature on empowerment, which emphasizes the importance of strengthening the patients' voices and enabling patients to take more control of their health and treatment. We contribute to the state-of-the-art knowledge by showing that the use of mHealth may have unintended consequences that do not lead to empowerment. Our analysis underscores the need for further research to investigate how mHealth impacts patient empowerment during consultations. ", doi="10.2196/26991", url="https://www.jmir.org/2021/6/e26991", url="http://www.ncbi.nlm.nih.gov/pubmed/34128817" } @Article{info:doi/10.2196/25958, author="Lauffenburger, C. Julie and Barlev, A. Renee and Sears, S. Ellen and Keller, A. Punam and McDonnell, E. Marie and Yom-Tov, Elad and Fontanet, P. Constance and Hanken, Kaitlin and Haff, Nancy and Choudhry, K. Niteesh", title="Preferences for mHealth Technology and Text Messaging Communication in Patients With Type 2 Diabetes: Qualitative Interview Study", journal="J Med Internet Res", year="2021", month="Jun", day="11", volume="23", number="6", pages="e25958", keywords="diabetes", keywords="technology", keywords="mobile health", keywords="medication adherence", keywords="mobile phone", abstract="Background: Individuals with diabetes need regular support to help them manage their diabetes on their own, ideally delivered via mechanisms that they already use, such as their mobile phones. One reason for the modest effectiveness of prior technology-based interventions may be that the patient perspective has been insufficiently incorporated. Objective: This study aims to understand patients' preferences for mobile health (mHealth) technology and how that technology can be integrated into patients' routines, especially with regard to medication use. Methods: We conducted semistructured qualitative individual interviews with patients with type 2 diabetes from an urban health care system to elicit and explore their perspectives on diabetes medication--taking behaviors, daily patterns of using mobile technology, use of mHealth technology for diabetes care, acceptability of text messages to support medication adherence, and preferred framing of information within text messages to support diabetes care. The interviews were digitally recorded and transcribed. The data were analyzed using codes developed by the study team to generate themes, with representative quotations selected as illustrations. Results: We conducted interviews with 20 participants, of whom 12 (60\%) were female and 9 (45\%) were White; in addition, the participants' mean glycated hemoglobin A1c control was 7.8 (SD 1.1). Overall, 5 key themes were identified: patients try to incorporate cues into their routines to help them with consistent medication taking; many patients leverage some form of technology as a cue to support adherence to medication taking and diabetes self-management behaviors; patients value simplicity and integration of technology solutions used for diabetes care, managing medications, and communicating with health care providers; some patients express reluctance to rely on mobile technology for these diabetes care behaviors; and patients believe they prefer positively framed communication, but communication preferences are highly individualized. Conclusions: The participants expressed some hesitation about using mobile technology in supporting diabetes self-management but have largely incorporated it or are open to incorporating it as a cue to make medication taking more automatic and less burdensome. When using technology to support diabetes self-management, participants exhibited individualized preferences, but overall, they preferred simple and positively framed communication. mHealth interventions may be improved by focusing on integrating them easily into daily routines and increasing the customization of content. ", doi="10.2196/25958", url="https://www.jmir.org/2021/6/e25958", url="http://www.ncbi.nlm.nih.gov/pubmed/34114964" } @Article{info:doi/10.2196/29122, author="Williams, Hants and Steinberg, Sarah and Berzin, Robin", title="The Development of a Digital Patient-Reported Outcome Measurement for Adults With Chronic Disease (The Parsley Symptom Index): Prospective Cohort Study", journal="JMIR Form Res", year="2021", month="Jun", day="11", volume="5", number="6", pages="e29122", keywords="patient-reported outcomes", keywords="PROMs", keywords="chronic diseases", keywords="symptom management", keywords="Parsley Symptom Index", keywords="Review of Symptoms", abstract="Background: The monitoring and management of chronic illness has always been a challenge. Patient-reported outcome measures (PROMs) can be powerful tools for monitoring symptoms and guiding treatment of chronic diseases, but the available PROM tools are either too broad or too disease specific for the needs of a primary care practice focused on longitudinal care. Objective: In this study we describe the development and preliminary validation of the Parsley Symptom Index (PSI). Methods: This prospective cohort study took place from January 5, 2018, to June 05, 2020, among a sample of 4621 adult patients at Parsley Health. After a review of literature, followed by binning and winnowing of potential items, a 45-item PROM that also served as a review of systems (ROS) was developed. The PSI was deployed and completed by patients via an online portal. Construct and face validity was performed by clinicians, tested on patients, and feasibility was measured by response rate, completion rate, and percentage of missing data. Results: The response rate for 12,175 collected PSIs was 93.72\% (4331/4621) with a 100\% item completion rate. A confirmatory factor analysis confirmed the model structure was satisfactory by a Comparative Fit Index of 0.943, Tucker--Lewis index of 0.938, and root mean square error of approximation of 0.028. Conclusions: A 45-item ROS-style PROM designed to capture chronic disease symptoms was developed, and preliminary validation suggests that the PSI can be deployed, completed, and helpful to both patients and clinicians. ", doi="10.2196/29122", url="https://formative.jmir.org/2021/6/e29122", url="http://www.ncbi.nlm.nih.gov/pubmed/33999007" } @Article{info:doi/10.2196/27820, author="Ordaz, H. Omar and Croff, L. Raina and Robinson, D. LaTroy and Shea, A. Steven and Bowles, P. Nicole", title="Optimization of Primary Care Among Black Americans Using Patient Portals: Qualitative Study", journal="J Med Internet Res", year="2021", month="Jun", day="3", volume="23", number="6", pages="e27820", keywords="health promotion", keywords="patient engagement", keywords="telehealth", keywords="telemedicine", keywords="health disparities", keywords="technology acceptance model", keywords="health belief model", abstract="Background: Reduced patient portal use has previously been reported among Black Americans when compared with that of the general population. This statistic is concerning because portals have been shown to improve the control of chronic conditions that are more prevalent and severe in Black Americans. At their very simplest, portals allow patients to access their electronic health records and often provide tools for patients to interact with their own health information, treatment team members, and insurance companies. However, research suggests that Black American patients have greater concerns over a lack of support, loss of privacy, and reduced personalization of care compared with other Americans, which results in a disparity of portal use. Objective: This qualitative investigation of primary care experiences of Black Americans from across the United States who participated in remote focus groups in April and May 2020 aims to explore the use and perceived value of patient portals to better understand any barriers to optimized treatment in the primary care setting. Methods: We performed an inductive thematic analysis of 8 remote focus group interviews with 29 Black American patients aged 30-60 years to qualitatively assess the experiences of Black American patients with regular access to portals. Results: Thematic analysis uncovered the following interrelated themes regarding patient portals in primary care: the optimization of care, patient empowerment, patient-provider communication, and patient burden. Conclusions: In contrast to what has been described regarding the reluctance of Black Americans to engage with patient portals, our focus groups revealed the general acceptance of patient portals, which were described overwhelmingly as tools with the potential for providing exceptional, personalized care that may even work to mitigate the unfair burden of disease for Black Americans in primary care settings. Thus, opportunities for better health care will clearly arise with increased communication, experience, and adoption of remote health care practices among Black Americans. ", doi="10.2196/27820", url="https://www.jmir.org/2021/6/e27820", url="http://www.ncbi.nlm.nih.gov/pubmed/34081016" } @Article{info:doi/10.2196/26143, author="Andersson, Ulrika and Bengtsson, Ulrika and Ranerup, Agneta and Midl{\"o}v, Patrik and Kjellgren, Karin", title="Patients and Professionals as Partners in Hypertension Care: Qualitative Substudy of a Randomized Controlled Trial Using an Interactive Web-Based System Via Mobile Phone", journal="J Med Internet Res", year="2021", month="Jun", day="3", volume="23", number="6", pages="e26143", keywords="eHealth", keywords="digital health", keywords="hypertension", keywords="mobile phones", keywords="patient-professional partnership", keywords="person-centered care", keywords="self-management", abstract="Background: The use of technology has the potential to support the patient{\textasciiacute}s active participation regarding treatment of hypertension. This might lead to changes in the roles of the patient and health care professional and affect the partnership between them. Objective: The aim of this qualitative study was to explore the partnership between patients and health care professionals and the roles of patients and professionals in hypertension management when using an interactive web-based system for self-management of hypertension via the patient's own mobile phone. Methods: Focus group interviews were conducted with 22 patients and 15 professionals participating in a randomized controlled trial in Sweden aimed at lowering blood pressure (BP) using an interactive web-based system via mobile phones. The interviews were audiorecorded and transcribed and analyzed using thematic analysis. Results: Three themes were identified: the technology, the patient, and the professional. The technology enabled documentation of BP treatment, mainly for sharing knowledge between the patient and the professional. The patients gained increased knowledge of BP values and their relation to daily activities and treatment. They were able to narrate about their BP treatment and take a greater responsibility, inspired by new insights and motivation for lifestyle changes. Based on the patient's understanding of hypertension, professionals could use the system as an educational tool and some found new ways of communicating BP treatment with patients. Some reservations were raised about using the system, that it might be too time-consuming to function in clinical practice and that too much measuring could result in stress for the patient and an increased workload for the professionals. In addition, not all professionals and patients had adopted the instructions regarding the use of the system, resulting in less realization of its potential. Conclusions: The use of the system led to the patients taking on a more active role in their BP treatment, becoming more of an expert of their BP. When using the system as intended, the professionals experienced it as a useful resource for communication regarding BP and lifestyle. Patients and professionals described a consultation on more equal grounds. The use of technology in hypertension management can promote a constructive and person-centered partnership between patient and professional. However, implementation of a new way of working should bring benefits and not be considered a burden for the professionals. To establish a successful partnership, both the patient and the professional need to be motivated toward a new way of working. Trial Registration: ClinicalTrials.gov NCT03554382; https://clinicaltrials.gov/ct2/show/NCT03554382 ", doi="10.2196/26143", url="https://www.jmir.org/2021/6/e26143", url="http://www.ncbi.nlm.nih.gov/pubmed/34081021" } @Article{info:doi/10.2196/25367, author="Chen, Qin and Jin, Jiahua and Zhang, Tingting and Yan, Xiangbin", title="The Effects of Log-in Behaviors and Web Reviews on Patient Consultation in Online Health Communities: Longitudinal Study", journal="J Med Internet Res", year="2021", month="Jun", day="3", volume="23", number="6", pages="e25367", keywords="online health communities", keywords="digital health", keywords="patient consultation", keywords="log-in behavior", keywords="web reviews", keywords="offline status", abstract="Background: With the rapid development of information technology and web-based communities, a growing number of patients choose to consult physicians in online health communities (OHCs) for information and treatment. Although extant research has primarily discussed factors that influence the consulting choices of OHC patients, there is still a lack of research on the effects of log-in behaviors and web reviews on patient consultation. Objective: This study aims to explore the impact of physicians' log-in behavior and web reviews on patient consultation. Methods: We conducted a longitudinal study to examine the effects of physicians' log-in behaviors and web reviews on patient consultation by analyzing short-panel data from 911 physicians over five periods in a Chinese OHC. Results: The results showed that the physician's log-in behavior had a positive effect on patient consultation. The maximum number of days with no log-ins for a physician should be 20. The two web signals (log-in behavior and web reviews) had no complementary relationship. Moreover, the offline signal (ie, offline status) has different moderating effects on the two web signals, positively moderating the relationship between web reviews and patient consultation. Conclusions: Our study contributes to the eHealth literature and advances the understanding of physicians' web-based behaviors. This study also provides practical implications, showing that physicians' log-in behavior alone can affect patient consultation rather than complementing web reviews. ", doi="10.2196/25367", url="https://www.jmir.org/2021/6/e25367", url="http://www.ncbi.nlm.nih.gov/pubmed/34081008" } @Article{info:doi/10.2196/24090, author="Valeur, St{\o}re Hanne and Lie, Kveim Anne and Moen, K{\aa}re", title="Patient Rationales Against the Use of Patient-Accessible Electronic Health Records: Qualitative Study", journal="J Med Internet Res", year="2021", month="May", day="28", volume="23", number="5", pages="e24090", keywords="patient-accessible electronic health records", keywords="open notes", keywords="active patients", keywords="patients' perspective", keywords="patient portal", keywords="electronic health records", keywords="participation", abstract="Background: Patient-accessible electronic health records (PAEHRs) enable patients to access their health records through a secure connection over the internet. Although previous studies of patient experiences with this kind of service have shown that a majority of users are positive toward PAEHRs, little is known about why some patients occasionally or regularly choose not to use them. A better understanding of why patients may choose not to make use of digital health services such as PAEHRs is important for further development and implementation of services aimed at having patients participate in digital health services. Objective: The objective of the study was to explore patients' rationales for not embracing online access to health records. Methods: Qualitative interviews were conducted with 40 patients in a department of internal medicine in a Norwegian hospital in 2018-2019. Interview transcripts were subjected to thematic content analysis. In this paper, we focus on the subject of nonuse of PAEHRs. Results: We identified 8 different rationales that study participants had for not embracing PAEHRs. When patients reflected on why they might not use PAEHRs, they variously explained that they found PAEHRs unnecessary (they did not feel they were useful), impersonal (they preferred oral dialogue with their doctor or nurse over written information), incomprehensible (the records contained medical terminology and explanations that were hard to understand), misery oriented (the records solely focused on disease), fear provoking (reading the records could cause unwanted emotional reactions), energy demanding (making sense of the records added to the work of being a patient), cumbersome (especially among patients who felt they did not have the necessary digital competence), and impoverishing (they were skeptical about the digital transformation of individual and social life). Conclusions: It is often assumed that the barriers to PAEHR use are mostly practical (such as lack of hardware and access to the internet). In this study, we showed that patients may have many other valid reasons for not wanting to adopt this kind of service. The results can help guide how PAEHRs and other digital health services are promoted and presented to patients, and they may suggest that the goal of a given new digital health service should not necessarily be full uptake by all patients. Rather, one should recognize that different patients might prefer and benefit from different kinds of ``analog'' and digital health services. ", doi="10.2196/24090", url="https://www.jmir.org/2021/5/e24090", url="http://www.ncbi.nlm.nih.gov/pubmed/34047711" } @Article{info:doi/10.2196/27712, author="Sivesind, Elise Torunn and Szeto, D. Mindy and Kim, William and Dellavalle, Paul Robert", title="Google Trends in Dermatology: Scoping Review of the Literature", journal="JMIR Dermatol", year="2021", month="May", day="25", volume="4", number="1", pages="e27712", keywords="Google Trends", keywords="search trends", keywords="internet", keywords="infodemiology", keywords="infoveillance", keywords="search terms", keywords="dermatology", keywords="skin cancer", keywords="databases", abstract="Background: Google Trends is a powerful online database and analytics tool of popular Google search queries over time and has the potential to inform medical practice and priorities. Objective: This review aimed to survey Google Trends literature in dermatology and elucidate its current roles and relationships with the field. Methods: A literature search was performed using PubMed to access and review relevant dermatology-related Google Trends studies published within the last 5 years. Results: Current research utilizing Google Trends data provides insight related to skin cancer, pruritus, cosmetic procedures, and COVID-19. We also found that dermatology is presently the highest-searched medical specialty---among 15 medical and surgical specialties as well as general practitioners. Google searches related to dermatology demonstrate a seasonal nature for various skin conditions and sun-related topics, depending on a region's inherent climate and hemi-sphere. In addition, celebrity social media and other viral posts have been found to potentiate Google searches about dermatology and drive public interest. Conclusions: A limited number of relevant studies may have been omitted by the simplified search strategy of this study, as well as by restriction to English language articles and articles indexed in the PubMed database. This could be expanded upon in a secondary systematic review. Future re-search is warranted to better understand how Google Trends can be utilized to improve the quality of clinic visits, drive public health campaigns, and detect disease clusters in real time. ", doi="10.2196/27712", url="https://derma.jmir.org/2021/1/e27712", url="http://www.ncbi.nlm.nih.gov/pubmed/37632813" } @Article{info:doi/10.2196/22269, author="Chiruvella, Varsha and Guddati, Kumar Achuta", title="Ethical Issues in Patient Data Ownership", journal="Interact J Med Res", year="2021", month="May", day="21", volume="10", number="2", pages="e22269", keywords="data", keywords="privacy", keywords="ownership", doi="10.2196/22269", url="https://www.i-jmr.org/2021/2/e22269", url="http://www.ncbi.nlm.nih.gov/pubmed/34018968" } @Article{info:doi/10.2196/26354, author="Lalor, P. John and Hu, Wen and Tran, Matthew and Wu, Hao and Mazor, M. Kathleen and Yu, Hong", title="Evaluating the Effectiveness of NoteAid in a Community Hospital Setting: Randomized Trial of Electronic Health Record Note Comprehension Interventions With Patients", journal="J Med Internet Res", year="2021", month="May", day="13", volume="23", number="5", pages="e26354", keywords="health literacy", keywords="crowdsourcing", keywords="natural language processing", keywords="information storage and retrieval", keywords="psychometrics", keywords="intervention", keywords="literacy", keywords="electronic health record", keywords="efficacy", keywords="comprehension", abstract="Background: Interventions to define medical jargon have been shown to improve electronic health record (EHR) note comprehension among crowdsourced participants on Amazon Mechanical Turk (AMT). However, AMT participants may not be representative of the general population or patients who are most at-risk for low health literacy. Objective: In this work, we assessed the efficacy of an intervention (NoteAid) for EHR note comprehension among participants in a community hospital setting. Methods: Participants were recruited from Lowell General Hospital (LGH), a community hospital in Massachusetts, to take the ComprehENotes test, a web-based test of EHR note comprehension. Participants were randomly assigned to control (n=85) or intervention (n=89) groups to take the test without or with NoteAid, respectively. For comparison, we used a sample of 200 participants recruited from AMT to take the ComprehENotes test (100 in the control group and 100 in the intervention group). Results: A total of 174 participants were recruited from LGH, and 200 participants were recruited from AMT. Participants in both intervention groups (community hospital and AMT) scored significantly higher than participants in the control groups (P<.001). The average score for the community hospital participants was significantly lower than the average score for the AMT participants (P<.001), consistent with the lower education levels in the community hospital sample. Education level had a significant effect on scores for the community hospital participants (P<.001). Conclusions: Use of NoteAid was associated with significantly improved EHR note comprehension in both community hospital and AMT samples. Our results demonstrate the generalizability of ComprehENotes as a test of EHR note comprehension and the effectiveness of NoteAid for improving EHR note comprehension. ", doi="10.2196/26354", url="https://www.jmir.org/2021/5/e26354", url="http://www.ncbi.nlm.nih.gov/pubmed/33983124" } @Article{info:doi/10.2196/27125, author="Suutari, Anne-Marie and Thor, Johan and Nordin, M. Annika M. and Kjellstr{\"o}m, Sofia and Areskoug Josefsson, Kristina", title="Improving Health for People Living With Heart Failure: Focus Group Study of Preconditions for Co-Production of Health and Care", journal="J Particip Med", year="2021", month="May", day="11", volume="13", number="2", pages="e27125", keywords="co-production of health and care", keywords="capability", keywords="motivation", keywords="opportunity", keywords="Capability, Opportunity, and Motivation Behavior model", keywords="focus groups", keywords="heart failure", keywords="Sweden", keywords="primary care", keywords="cardiology", keywords="co-production", abstract="Background: Co-production of health and care involving patients, families of patients, and professionals in care processes can create joint learning about how to meet patients' needs. Although barriers and facilitators to co-production have been examined previously in various health care contexts, the preconditions in Swedish chronic cardiac care contexts are yet to be explored. This study is set in the health system of the Swedish region of J{\"o}nk{\"o}ping County and is part of system-wide efforts to promote better health for persons with heart failure (HF). Objective: The objective of this study was to test the usefulness of the Capability, Opportunity, and Motivation Behavior (COM-B) model when assessing the barriers to and facilitators of co-production of health and care perceived by patients with HF, family members of patients with HF, and professionals in a Swedish chronic cardiac care context as a guide for subsequent initiatives. Methods: Data collection involved 1 focus group interview (FGI) with patients with HF (n=5), 1 FGI with family members of patients with HF (n=5), 1 FGI with professionals in primary care (n=7), and 1 FGI with professionals in cardiac care (n=4). In addition, patients with HF kept diaries of their thoughts regarding co-production. Using a deductive approach to content analysis, underpinned by the COM-B model, barriers and facilitators were categorized into capabilities, opportunities, and motivations to co-produce health and care. Results: The participants showed limited understanding of co-production as a practice. They appeared to view it as a privilege to be offered to patients on top of traditional care and rarely as an approach for improving health care processes. The interviews revealed the limited health literacy among patients and the struggle of professionals to convey health information to these patients. Co-production was considered to be more resource-intensive than traditional care. Different expectations of stakeholders' roles were revealed: professionals expected older patients not to want to co-produce health and care, and all participants expected professionals to be in charge of health care services. The family members' position involved trying to balance their desire to support their relatives with understanding when, how, and with whom to co-produce. Presumed benefits motivated stakeholders: co-production was recognized to motivate patients to improve self-care. However, the participants recognized that motivation to get involved in health and care decisions varies over time among stakeholders. Conclusions: Co-production can be facilitated by the stakeholders' motivation. However, varying levels of understanding of co-production, patients' limited health literacy, unease with power sharing between patients and professionals, and resource constraints are barriers that need to be managed to promote co-produced care and better health for persons living with HF. Further research is warranted to explore how to co-produce health care services with patients with HF and how leaders can facilitate the inevitable cultural change it requires and represents. ", doi="10.2196/27125", url="https://jopm.jmir.org/2021/2/e27125", url="http://www.ncbi.nlm.nih.gov/pubmed/33973859" } @Article{info:doi/10.2196/16156, author="Peltola, Kristiina Maria and Poikonen-Saksela, Paula and Mattson, Johanna and Parkkari, Timo", title="A Novel Digital Patient-Reported Outcome Platform (Noona) for Clinical Use in Patients With Cancer: Pilot Study Assessing Suitability", journal="JMIR Form Res", year="2021", month="May", day="6", volume="5", number="5", pages="e16156", keywords="electronic patient-reported outcome", keywords="adverse events", keywords="patients with cancer", abstract="Background: As the incidence of cancer is on the rise, there is a need to develop modern communication tools between patients and the medical personnel. Electronic patient-reported outcome (ePRO) measures increase the safety of cancer treatments and may have an impact on treatment outcome as well. ePRO may also provide a cost-efficient way to organize follow-up for patients with cancer. Noona is an internet-based system for patients to self-report symptoms and adverse events of cancer treatments from home via a computer or a smart device (eg, smartphone, tablet). Objective: In this pilot study, we assessed the suitability of a novel ePRO application (Noona) for patients with cancer, nurses, and doctors at the Helsinki University Hospital, Finland. Methods: The study included 44 patients with cancer (different solid tumor types) and 17 health care professionals (nurses or medical doctors). Patients were either operated or received systemic treatment or radiotherapy. Patients reported their symptoms to the medical staff via Noona. In addition, patients and clinicians answered a questionnaire, based on which Noona's suitability for clinical use was evaluated in terms of usability (ease of use, operability, and learnability), reliability (subjective opinion of the participant), and incidence of harmful events reported by the participants. Results: A total of 41/44 (93\%) patients and 15/17 (88\%) professionals reported that the program was easy or quite easy to use; 38/44 (86\%) patients and 11/17 (65\%) professionals found Noona reliable, and 38/44 (86\%) patients and 10/17 (59\%) professionals would recommend Noona to other patients or their colleagues. No harmful incidences caused by the use of Noona were reported by the patients; however, 1 harmful incidence was reported by one of the professionals. Conclusions: The majority of the participants felt that Noona appeared reliable and it was easy to use. Noona seems to be a useful tool for monitoring patient's symptoms during cancer therapy. Future studies will determine the impact of this ePRO platform in routine clinical practice. ", doi="10.2196/16156", url="https://formative.jmir.org/2021/5/e16156", url="http://www.ncbi.nlm.nih.gov/pubmed/33955841" } @Article{info:doi/10.2196/23599, author="Hall, J. Natalie and Berry, K. Sameer and Aguilar, Jack and Brier, Elizabeth and Shah, Parth and Cheng, Derek and Herman, Jeremy and Stein, Theodore and Spiegel, R. Brennan M. and Almario, V. Christopher", title="Impact of an Online Gastrointestinal Symptom History Taker on Physician Documentation and Charting Time: Pragmatic Controlled Trial", journal="JMIR Form Res", year="2021", month="May", day="4", volume="5", number="5", pages="e23599", keywords="patient-provider portal", keywords="computer-generated patient history", keywords="patient-reported outcome", keywords="gastrointestinal", keywords="EHR", abstract="Background: A potential benefit of electronic health records (EHRs) is that they could potentially save clinician time and improve documentation by auto-generating the history of present illness (HPI) in partnership with patients prior to the clinic visit. We developed an online patient portal called AEGIS (Automated Evaluation of Gastrointestinal [GI] Symptoms) that systematically collects patient GI symptom information and then transforms the data into a narrative HPI that is available for physicians to review in the EHR prior to seeing the patient. Objective: This study aimed to compare whether use of an online GI symptom history taker called AEGIS improves physician-centric outcomes vs usual care. Methods: We conducted a pragmatic controlled trial among adults aged ?18 years scheduled for a new patient visit at 4 GI clinics at an academic medical center. Patients who completed AEGIS were matched with controls in the intervention period who did not complete AEGIS as well as controls who underwent usual care in the pre-intervention period. Of note, the pre-intervention control group was formed as it was not subject to contamination bias, unlike for post-intervention controls. We then compared the following outcomes among groups: (1) documentation of alarm symptoms, (2) documentation of family history of GI malignancy, (3) number of follow-up visits in a 6-month period, (4) number of tests ordered in a 6-month period, and (5) charting time (difference between appointment time and time the encounter was closed). Multivariable regression models were used to adjust for potential confounding. Results: Of the 774 patients who were invited to complete AEGIS, 116 (15.0\%) finished it prior to their visit. The 116 AEGIS patients were then matched with 343 and 102 controls in the pre- and post-intervention periods, respectively. There were no statistically significant differences among the groups for documentation of alarm symptoms and GI cancer family history, number of follow-up visits and ordered tests, or charting time (all P>.05). Conclusions: Use of a validated online HPI-generation portal did not improve physician documentation or reduce workload. Given universal adoption of EHRs, further research examining how to optimally leverage patient portals for improving outcomes are needed. ", doi="10.2196/23599", url="https://formative.jmir.org/2021/5/e23599", url="http://www.ncbi.nlm.nih.gov/pubmed/33944789" } @Article{info:doi/10.2196/22766, author="Scalia, Peter and Ahmad, Farhan and Schubbe, Danielle and Forcino, Rachel and Durand, Marie-Anne and Barr, James Paul and Elwyn, Glyn", title="Integrating Option Grid Patient Decision Aids in the Epic Electronic Health Record: Case Study at 5 Health Systems", journal="J Med Internet Res", year="2021", month="May", day="3", volume="23", number="5", pages="e22766", keywords="shared decision making", keywords="patient decision aids", keywords="electronic health record", keywords="implementation", keywords="HL7 SMART on FHIR", abstract="Background: Some researchers argue that the successful implementation of patient decision aids (PDAs) into clinical workflows depends on their integration into electronic health records (EHRs). Anecdotally, we know that EHR integration is a complex and time-consuming task; yet, the process has not been examined in detail. As part of an implementation project, we examined the work involved in integrating an encounter PDA for symptomatic uterine fibroids into Epic EHR systems. Objective: This study aims to identify the steps and time required to integrate a PDA into the Epic EHR system and examine facilitators and barriers to the integration effort. Methods: We conducted a case study at 5 academic medical centers in the United States. A clinical champion at each institution liaised with their Epic EHR team to initiate the integration of the uterine fibroid Option Grid PDAs into clinician-facing menus. We scheduled regular meetings with the Epic software analysts and an expert Epic technologist to discuss how best to integrate the tools into Epic for use by clinicians with patients. The meetings were then recorded and transcribed. Two researchers independently coded the transcripts and field notes before categorizing the codes and conducting a thematic analysis to identify the facilitators and barriers to EHR integration. The steps were reviewed and edited by an Epic technologist to ensure their accuracy. Results: Integrating the uterine fibroid Option Grid PDA into clinician-facing menus required an 18-month timeline and a 6-step process, as follows: task priority negotiation with Epic software teams, security risk assessment, technical review, Epic configuration; troubleshooting, and launch. The key facilitators of the process were the clinical champions who advocated for integration at the institutional level and the presence of an experienced technologist who guided Epic software analysts during the build. Another facilitator was the use of an emerging industry standard app platform (Health Level 7 Substitutable Medical Applications and Reusable Technologies on Fast Healthcare Interoperability Resources) as a means of integrating the Option Grid into existing systems. This standard platform enabled clinicians to access the tools by using single sign-on credentials and prevented protected health information from leaving the EHR. Key barriers were the lack of control over the Option Grid product developed by EBSCO (Elton B Stephens Company) Health; the periodic Epic upgrades that can result in a pause on new software configurations; and the unforeseen software problems with Option Grid (ie, inability to print the PDA), which delayed the launch of the PDA. Conclusions: The integration of PDAs into the Epic EHR system requires a 6-step process and an 18-month timeline. The process required support and prioritization from a clinical champion, guidance from an experienced technologist, and a willing EHR software developer team. ", doi="10.2196/22766", url="https://www.jmir.org/2021/5/e22766", url="http://www.ncbi.nlm.nih.gov/pubmed/33938806" } @Article{info:doi/10.2196/26877, author="Ruhi, Umar and Chugh, Ritesh", title="Utility, Value, and Benefits of Contemporary Personal Health Records: Integrative Review and Conceptual Synthesis", journal="J Med Internet Res", year="2021", month="Apr", day="29", volume="23", number="4", pages="e26877", keywords="electronic personal health records", keywords="PHR", keywords="functionality synopsis", keywords="value analysis", keywords="consumer health informatics", abstract="Background: Contemporary personal health record (PHR) technologies offer a useful platform for individuals to maintain a lifelong record of personally reported and clinically sourced data from various points of medical care. Objective: This paper presents an integrative review and synthesis of the extant literature on PHRs. This review draws upon multiple lenses of analysis and deliberates value perspectives of PHRs at the product, consumer, and industry levels. Methods: Academic databases were searched using multiple keywords related to PHRs for the years 2001-2020. Three research questions were formulated and used as selection criteria in our review of the extant literature relevant to our study. Results: We offer a high-level functional utility model of PHR features and functions. We also conceptualize a consumer value framework of PHRs, highlighting the applications of these technologies across various health care delivery activities. Finally, we provide a summary of the benefits of PHRs for various health care constituents, including consumers, providers, payors, and public health agencies. Conclusions: PHR products offer a myriad of content-, connectivity-, and collaboration-based features and functions for their users. Although consumers benefit from the tools provided by PHR technologies, their overall value extends across the constituents of the health care delivery chain. Despite advances in technology, our literature review identifies a shortfall in the research addressing consumer value enabled by PHR tools. In addition to scholars and researchers, our literature review and proposed framework may be especially helpful for value analysis committees in the health care sector that are commissioned for the appraisal of innovative health information technologies such as PHRs. ", doi="10.2196/26877", url="https://www.jmir.org/2021/4/e26877", url="http://www.ncbi.nlm.nih.gov/pubmed/33866308" } @Article{info:doi/10.2196/25054, author="Alkureishi, A. Maria and Johnson, Tyrone and Nichols, Jacqueline and Dhodapkar, Meera and Czerwiec, K. M. and Wroblewski, Kristen and Arora, M. Vineet and Lee, Wei Wei", title="Impact of an Educational Comic to Enhance Patient-Physician--Electronic Health Record Engagement: Prospective Observational Study", journal="JMIR Hum Factors", year="2021", month="Apr", day="28", volume="8", number="2", pages="e25054", keywords="electronic health records", keywords="patient", keywords="comic", keywords="education", keywords="engagement", abstract="Background: Electronic health record (EHR) use can impede or augment patient-physician communication. However, little research explores the use of an educational comic to improve patient-physician-EHR interactions. Objective: To evaluate the impact of an educational comic on patient EHR self-advocacy behaviors to promote patient engagement with the EHR during clinic visits. Methods: We conducted a prospective observational study with adult patients and parents of pediatric patients at the University of Chicago General Internal Medicine (GIM) and Pediatric Primary Care (PPC) clinics. We developed an educational comic highlighting EHR self-advocacy behaviors and distributed it to study participants during check-in for their primary care visits between May 2017 and May 2018. Participants completed a survey immediately after their visit, which included a question on whether they would be interested in a follow-up telephone interview. Of those who expressed interest, 50 participants each from the adult and pediatric parent cohorts were selected at random for follow-up telephone interviews 8 months (range 3-12 months) post visit. Results: Overall, 71.0\% (115/162) of adult patients and 71.6\% (224/313) of pediatric parents agreed the comic encouraged EHR involvement. African American and Hispanic participants were more likely to ask to see the screen and become involved in EHR use due to the comic (adult P=.01, P=.01; parent P=.02, P=.006, respectively). Lower educational attainment was associated with an increase in parents asking to see the screen and to be involved ($\rho$=?0.18, P=.003; $\rho$=?0.19, P<.001, respectively) and in adults calling for physician attention ($\rho$=?0.17, P=.04), which was confirmed in multivariate analyses. Female GIM patients were more likely than males to ask to be involved (median 4 vs 3, P=.003). During follow-up phone interviews, 90\% (45/50) of adult patients and all pediatric parents (50/50) remembered the comic. Almost half of all participants (GIM 23/50, 46\%; PPC 21/50, 42\%) recalled at least one best-practice behavior. At subsequent visits, adult patients reported increases in asking to see the screen (median 3 vs 4, P=.006), and pediatric parents reported increases in asking to see the screen and calling for physician attention (median 3 vs 4, Ps<.001 for both). Pediatric parents also felt that the comic had encouraged them to speak up and get more involved with physician computer use since the index visit (median 4 vs 4, P=.02) and that it made them feel more empowered to get involved with computer use at future visits (median 3 vs 4, P<.001). Conclusions: Our study found that an educational comic may improve patient advocacy for enhanced patient-physician-EHR engagement, with higher impacts on African American and Hispanic patients and patients with low educational attainment. ", doi="10.2196/25054", url="https://humanfactors.jmir.org/2021/2/e25054", url="http://www.ncbi.nlm.nih.gov/pubmed/33908891" } @Article{info:doi/10.2196/27397, author="Blease, Charlotte and Torous, John and Kharko, Anna and DesRoches, M. Catherine and Harcourt, Kendall and O'Neill, Stephen and Salmi, Liz and Wachenheim, Deborah and H{\"a}gglund, Maria", title="Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts", journal="JMIR Ment Health", year="2021", month="Apr", day="16", volume="8", number="4", pages="e27397", keywords="open notes", keywords="electronic health records", keywords="attitudes", keywords="survey", keywords="mental health", keywords="psychiatry", keywords="psychotherapy", keywords="qualitative research", keywords="mobile phone", abstract="Background: In a growing number of countries worldwide, clinicians are sharing mental health notes, including psychiatry and psychotherapy notes, with patients. Objective: The aim of this study is to solicit the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care. Methods: In August 2020, we conducted a web-based survey of international experts on the practice of sharing mental health notes. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates who have extensive research knowledge about or experience of providing access to or having access to mental health notes. This study undertook a qualitative descriptive analysis of experts' written responses and opinions (comments) to open-ended questions on training clinicians, patient guidance, and suggested policy regulations. Results: A total of 70 of 92 (76\%) experts from 6 countries responded. We identified four major themes related to opening mental health notes to patients: the need for clarity about provider policies on exemptions, providing patients with basic information about open notes, clinician training in writing mental health notes, and managing patient-clinician disagreement about mental health notes. Conclusions: This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design. ", doi="10.2196/27397", url="https://mental.jmir.org/2021/4/e27397", url="http://www.ncbi.nlm.nih.gov/pubmed/33861202" } @Article{info:doi/10.2196/26265, author="Li, PengFei and Xu, Lin and Tang, TingTing and Wu, Xiaoqian and Huang, Cheng", title="Users' Willingness to Share Health Information in a Social Question-and-Answer Community: Cross-sectional Survey in China", journal="JMIR Med Inform", year="2021", month="Mar", day="30", volume="9", number="3", pages="e26265", keywords="health information", keywords="willingness to share information", keywords="", keywords="structural equation model", keywords="Zhihu", abstract="Background: Social question-and-answer communities play an increasingly important role in the dissemination of health information. It is important to identify influencing factors of user willingness to share health information to improve public health literacy. Objective: This study explored influencing factors of social question-and-answer community users who share health information to provide reference for the construction of a high-quality health information sharing community. Methods: A cross-sectional study was conducted through snowball sampling of 185 participants who are Zhihu users in China. A structural equation analysis was used to verify the interaction and influence of the strength between variables in the model. Hierarchical regression was also used to test the mediating effect in the model. Results: Altruism ($\beta$=.264, P<.001), intrinsic reward ($\beta$=.260, P=.03), self-efficacy ($\beta$=.468, P<.001), and community influence ($\beta$=.277, P=.003) had a positive effect on users' willingness to share health information (WSHI). By contrast, extrinsic reward ($\beta$=?0.351, P<.001) had a negative effect. Self-efficacy also had a mediating effect ($\beta$=.147, 29.15\%, 0.147/0.505) between community influence and WSHI. Conclusions: The findings suggest that users' WSHI is influenced by many factors including altruism, self-efficacy, community influence, and intrinsic reward. Improving the social atmosphere of the platform is an effective method of encouraging users to share health information. ", doi="10.2196/26265", url="https://medinform.jmir.org/2021/3/e26265", url="http://www.ncbi.nlm.nih.gov/pubmed/33783364" } @Article{info:doi/10.2196/22695, author="Radu, Roxana and Hern{\'a}ndez-Ortega, Sara and Borrega, Oriol and Palmeri, Avril and Athanasiou, Dimitrios and Brooke, Nicholas and Chap{\'i}, Inma and Le Corvec, Ana{\"i}s and Guglieri, Michela and Perera-Lluna, Alexandre and Garrido-Aguirre, Jon and Ryll, Bettina and Nafria Escalera, Begonya", title="Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study", journal="JMIR Form Res", year="2021", month="Mar", day="29", volume="5", number="3", pages="e22695", keywords="Share4Rare", keywords="rare disease", keywords="citizen science", keywords="participatory medicine", keywords="natural history", keywords="genotype", keywords="phenotype", abstract="Background: Rare disease communities are spread around the globe and segmented by their condition. Little research has been performed on the majority of rare diseases. Most patients who are affected by a rare disease have no research on their condition because of a lack of knowledge due to absence of common groups in the research community. Objective: We aimed to develop a safe and secure community of rare disease patients, without geographic or language barriers, to promote research. Methods: Cocreation design methodology was applied to build Share4Rare, with consultation and input through workshops from a variety of stakeholders (patients, caregivers, clinicians, and researchers). Results: The workshops allowed us to develop a layered version of the platform based on educating patients and caregivers with publicly accessible information, a secure community for the patients and caregivers, and a research section with the purpose of collecting patient information for analysis, which was the core and final value of the platform. Conclusions: Rare disease research requires global collaboration in which patients and caregivers have key roles. Collective intelligence methods implemented in digital platforms reduce geographic and language boundaries and involve patients in a unique and universal project. Their contributions are essential to increase the amount of scientific knowledge that experts have on rare diseases. Share4Rare has been designed as a global platform to facilitate the donation of clinical information to foster research that matters to patients with rare conditions. The codesign methods with patients have been essential to create a patient-centric design. ", doi="10.2196/22695", url="https://formative.jmir.org/2021/3/e22695", url="http://www.ncbi.nlm.nih.gov/pubmed/33779572" } @Article{info:doi/10.2196/13999, author="Martini, Mariano and Bragazzi, Luigi Nicola", title="Googling for Neurological Disorders: From Seeking Health-Related Information to Patient Empowerment, Advocacy, and Open, Public Self-Disclosure in the Neurology 2.0 Era", journal="J Med Internet Res", year="2021", month="Mar", day="26", volume="23", number="3", pages="e13999", keywords="advocacy", keywords="health information seeking", keywords="neurological disorders", keywords="open self-disclosure", doi="10.2196/13999", url="https://www.jmir.org/2021/3/e13999", url="http://www.ncbi.nlm.nih.gov/pubmed/30946019" } @Article{info:doi/10.2196/21642, author="Alasmari, Ashwag and Zhou, Lina", title="Share to Seek: The Effects of Disease Complexity on Health Information--Seeking Behavior", journal="J Med Internet Res", year="2021", month="Mar", day="24", volume="23", number="3", pages="e21642", keywords="health information consumers", keywords="multimorbidity", keywords="information searching", keywords="information seeking", keywords="disease development", abstract="Background: Web-based question and answer (Q\&A) sites have emerged as an alternative source for serving individuals' health information needs. Although a number of studies have analyzed user-generated content in web-based Q\&A sites, there is insufficient understanding of the effect of disease complexity on information-seeking needs and the types of information shared, and little research has been devoted to the questions concerning multimorbidity. Objective: This study aims to investigate seeking of health information in Q\&A sites at different levels of disease complexity. Specifically, this study investigates the effects of disease complexity on information-seeking needs, types of information shared, and stages of disease development. Methods: First, we selected a random sample of 400 questions separately from each of the Q\&A sites: Yahoo Answers and WebMD Answers. The data cleaning resulted in a final set of 624 questions from the two sites. We used a mixed methods approach, including qualitative content analysis and quantitative statistical analysis. Results: The one-way results of ANOVA showed significant effects of disease complexity (single vs multimorbid disease questions) on two information-seeking needs: diagnosis (F1,622=5.08; P=.02) and treatment (F1,622=4.82; P=.02). There were also significant differences between the two levels of disease complexity in two stages of disease development: the general health stage (F1,622=48.02; P<.001) and the chronic stage (F1,622=54.01; P<.001). In addition, our results showed significant effects of disease complexity across all types of shared information: demographic information (F1,622=32.24; P<.001), medical diagnosis (F1,622=11.04; P<.001), and treatment and prevention (F1,622=14.55; P<.001). Conclusions: Our findings present implications for the design of web-based Q\&A sites to better support health information seeking. Future studies should be conducted to validate the generality of these findings and apply them to improve the effectiveness of health information in Q\&A sites. ", doi="10.2196/21642", url="https://www.jmir.org/2021/3/e21642", url="http://www.ncbi.nlm.nih.gov/pubmed/33759803" } @Article{info:doi/10.2196/18763, author="Zhang, Xianzuo and Chen, Xiaoxuan and Kourkoumelis, Nikolaos and Gao, Ran and Li, Guoyuan and Zhu, Chen", title="A Social Media--Promoted Educational Community of Joint Replacement Patients Using the WeChat App: Survey Study", journal="JMIR Mhealth Uhealth", year="2021", month="Mar", day="18", volume="9", number="3", pages="e18763", keywords="WeChat", keywords="social media", keywords="arthroplasty", keywords="perioperative education", keywords="patient satisfaction", abstract="Background: Much effort has been made to optimize the results of total hip arthroplasty and total knee arthroplasty. With the rapid growth of social media use, mobile apps, such as WeChat, have been considered for improving outcomes and patient satisfaction after total hip arthroplasty and total knee arthroplasty. Objective: We aimed to evaluate the effectiveness of a WeChat-based community as an intervention for overall patient satisfaction. Methods: The study was conducted among discharged in-hospital patients who received hip or knee procedures in the First Affiliated Hospital of the University of Science and Technology of China from April 2019 to January 2020. An educational online social community was constructed with the WeChat app. Participants willing to join the community were enrolled in a WeChat group and received 3 months of intervention and follow-up. Those who were not willing to use the account were included in a control group and received routine publicity via telephone, mail, and brochures. The Danish Health and Medicine Authority patient satisfaction questionnaire was used to score perioperative patient education and overall satisfaction. The contents in the group chat were analyzed using natural language processing tools. Results: A total of 3428 patients were enrolled in the study, including 2292 in the WeChat group and 1236 in the control group. Participants in the WeChat group had higher overall satisfaction scores than those in the control group (mean 8.48, SD 1.12 vs mean 6.66, SD 1.80, P<.001). The difference between the two groups was significant for primary surgery based on subgroup stratification. To control confounding factors and explore the effects of WeChat participation as a mediating variable between perioperative patient education and overall satisfaction, hierarchical regression was utilized. An interpatient interaction model was found in the community group chat, and it contributed to overall satisfaction. Patients in the group with more interpatient interactions were more likely to have better overall satisfaction. Conclusions: The social media--promoted educational community using WeChat was effective among joint replacement patients. Provision of more perioperative education is associated with more active patient participation in the community and therefore more patient satisfaction in terms of the overall joint procedure. Community group chat could facilitate interactions among patients and contribute to overall satisfaction. ", doi="10.2196/18763", url="https://mhealth.jmir.org/2021/3/e18763", url="http://www.ncbi.nlm.nih.gov/pubmed/33734094" } @Article{info:doi/10.2196/21942, author="Weijers, Miriam and Feron, Frans and van der Zwet, Jonne and Bastiaenen, Caroline", title="Evaluation of a New Personalized Health Dashboard in Preventive Child Health Care: Protocol for a Mixed Methods Feasibility Randomized Controlled Trial", journal="JMIR Res Protoc", year="2021", month="Mar", day="16", volume="10", number="3", pages="e21942", keywords="child health services", keywords="prevention", keywords="control", keywords="personalized health care", keywords="international classification of functioning", keywords="disability", keywords="health", keywords="patient", keywords="access to records", keywords="personalized", keywords="child", keywords="feasibility", abstract="Background: A new dashboard, the 360{\textordmasculine}CHILD-profile, was developed to adopt personalized health care within preventive child health care. On this profile, holistic health data are visualized in a single image to provide parents, adolescents, and caregivers direct access to a manageable r{\'e}sum{\'e} of a child's medical record. Theoretical ordering, conforming to ``International Classification of Functioning, Disability and Health for Children and Youth'', guides clinical reasoning toward the biopsychosocial concept of health. It is yet unknown if and how this promising tool functions in practice, and a variety of feasibility questions must be addressed. Objective: This paper describes the design and methods of a feasibility randomized controlled trial (RCT), with the aim of evaluating the RCT's feasibility (recruitment, response, measure completion, and intervention allocation) and 360{\textordmasculine}CHILD-profile's feasibility (usability and potential effectiveness). Methods: A pragmatic mixed methods study design was chosen, starting with an RCT to measure feasibility and health literacy in 2 parallel groups (1:1). Qualitative research will then be used to understand and explain quantitative findings and to explore the stakeholders' perspectives on the potential of the 360{\textordmasculine}CHILD-profile. Participants will include child health care professionals (n?30), parents (n?30), and caregivers (n?10) of children who experience developmental problems (age 0-16 years). Children will only be able to participate if they are older than 11 years (adolescents, n?10). The 2 groups included in the study will receive standard care. The experimental group will additionally receive personalized 360{\textordmasculine}CHILD-profiles. Results: After an intervention period of 6 months, quantitative outcomes will be measured, analyzed (descriptive feasibility statistics and preliminary between-group differences) and used to purposively sample for semistructured interviews. Conclusions: Study results will provide knowledge for building theory on the 360{\textordmasculine}CHILD-profile and designing future (effect) studies. Trial Registration: Netherlands Trial Register NTR6909; https://www.trialregister.nl/trial/6731 International Registered Report Identifier (IRRID): DERR1-10.2196/21942 ", doi="10.2196/21942", url="https://www.researchprotocols.org/2021/3/e21942", url="http://www.ncbi.nlm.nih.gov/pubmed/33724191" } @Article{info:doi/10.2196/25473, author="Entezarjou, Artin and Calling, Susanna and Bhattacharyya, Tapomita and Milos Nymberg, Veronica and Vigren, Lina and Labaf, Ashkan and Jakobsson, Ulf and Midl{\"o}v, Patrik", title="Antibiotic Prescription Rates After eVisits Versus Office Visits in Primary Care: Observational Study", journal="JMIR Med Inform", year="2021", month="Mar", day="15", volume="9", number="3", pages="e25473", keywords="telemedicine", keywords="antibiotics", keywords="streptococcal tonsillitis", keywords="cystitis", keywords="respiratory tract infection", keywords="virtual visit", keywords="virtual", keywords="eVisit", abstract="Background: Direct-to-consumer telemedicine is an increasingly used modality to access primary care. Previous research on assessment using synchronous virtual visits showed mixed results regarding antibiotic prescription rates, and research on assessment using asynchronous chat-based eVisits is lacking. Objective: The goal of the research was to investigate if eVisit management of sore throat, other respiratory symptoms, or dysuria leads to higher rates of antibiotic prescription compared with usual management using physical office visits. Methods: Data from 3847 eVisits and 759 office visits for sore throat, dysuria, or respiratory symptoms were acquired from a large private health care provider in Sweden. Data were analyzed to compare antibiotic prescription rates within 3 days, antibiotic type, and diagnoses made. For a subset of sore throat visits (n=160 eVisits, n=125 office visits), Centor criteria data were manually extracted and validated. Results: Antibiotic prescription rates were lower following eVisits compared with office visits for sore throat (169/798, 21.2\%, vs 124/312, 39.7\%; P<.001) and respiratory symptoms (27/1724, 1.6\%, vs 50/251, 19.9\%; P<.001), while no significant differences were noted comparing eVisits to office visits for dysuria (1016/1325, 76.7\%, vs 143/196, 73.0\%; P=.25). Guideline-recommended antibiotics were prescribed similarly following sore throat eVisits and office visits (163/169, 96.4\%, vs 117/124, 94.4\%; P=.39). eVisits for respiratory symptoms and dysuria were more often prescribed guideline-recommended antibiotics (26/27, 96.3\%, vs 37/50, 74.0\%; P=.02 and 1009/1016, 99.3\%, vs 135/143, 94.4\%; P<.001, respectively). Odds ratios of antibiotic prescription following office visits compared with eVisits after adjusting for age and differences in set diagnoses were 2.94 (95\% CI 1.99-4.33), 11.57 (95\% CI 5.50-24.32), 1.01 (95\% CI 0.66-1.53), for sore throat, respiratory symptoms, and dysuria, respectively. Conclusions: The use of asynchronous eVisits for the management of sore throat, dysuria, and respiratory symptoms is not associated with an inherent overprescription of antibiotics compared with office visits. Trial Registration: ClinicalTrials.gov NCT03474887; https://clinicaltrials.gov/ct2/show/NCT03474887 ", doi="10.2196/25473", url="https://medinform.jmir.org/2021/3/e25473", url="http://www.ncbi.nlm.nih.gov/pubmed/33720032" } @Article{info:doi/10.2196/24302, author="Godfrey, M. Emily and Kazmerski, M. Traci and Brown, Georgia and Thayer, K. Erin and Mentch, Laura and Pam, Molly and Al Achkar, Morhaf", title="Educational Needs and Preferences for Patient-Centered Outcomes Research in the Cystic Fibrosis Community: Mixed Methods Study", journal="JMIR Form Res", year="2021", month="Mar", day="4", volume="5", number="3", pages="e24302", keywords="cystic fibrosis", keywords="needs assessment", keywords="patient-centered outcomes research", keywords="training", keywords="education", keywords="team building", keywords="patient engagement", abstract="Background: Cystic fibrosis (CF) is a rare, life-shortening, multiorgan disease, the treatment of which has seen significant increases in the life expectancy of those with CF. Many advances in CF care are thanks to the dedicated and active participation of people with CF as research participants. Unfortunately, most CF research teams still do not fully partner with people with CF or their caregivers. Objective: The aim of this study was to determine the interest, knowledge gaps, and desired format for patient-centered outcomes research (PCOR) training in the CF community. Methods: We surveyed patients, caregivers, researchers, research staff, and diverse health care providers via list servers and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with 3 small-group discussion sessions with 22 participants who completed the survey to establish consensus and prioritize key learning components of a PCOR training program. We summarized results using descriptive statistics. Results: A total of 170 participants completed the survey (patients/caregivers: 96/170, 56.5\%; researchers/health care providers: 74/170, 43.5\%). Among providers, 26\% (19/74) were physicians/advanced practice providers, 20\% (15/74) were nurses, and 54\% (40/74) were from other disciplines. Among all participants, 86.5\% (147/170) expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/health care provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (82/96, 85\%). Meanwhile, researchers/health care providers desired information on how to include outcomes important to patients/caregivers (55/74, 74\%) and the quality and impact of PCOR research (52/74, 70\% and 51/74, 69\%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (75/96, 78\%). Researchers/health care providers wanted to receive training about how to establish trust (47/74, 64\%) and maintain confidentiality (47/74, 64\%) when including patient or caregiver partners on the PCOR team. During follow-up discussions, participants emphasized the importance of addressing the traditional patient/caregiver and researchers/health care provider hierarchy by teaching about transparency, appreciation, creating a common language between the groups, and providing specific training on ``how'' to do PCOR. Conclusions: Our findings suggest CF community members are interested in PCOR. A high-quality training program would fill a current deficit in methodological research. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF. ", doi="10.2196/24302", url="https://formative.jmir.org/2021/3/e24302", url="http://www.ncbi.nlm.nih.gov/pubmed/33661127" } @Article{info:doi/10.2196/19074, author="Freise, Lisa and Neves, Luisa Ana and Flott, Kelsey and Harrison, Paul and Kelly, John and Darzi, Ara and Mayer, K. Erik", title="Assessment of Patients' Ability to Review Electronic Health Record Information to Identify Potential Errors: Cross-sectional Web-Based Survey", journal="JMIR Form Res", year="2021", month="Feb", day="26", volume="5", number="2", pages="e19074", keywords="patient portals", keywords="electronic health records", keywords="patient participation", keywords="medical errors", keywords="patient safety", abstract="Background: Sharing personal health information positively impacts quality of care across several domains, and particularly, safety and patient-centeredness. Patients may identify and flag up inconsistencies in their electronic health records (EHRs), leading to improved information quality and patient safety. However, in order to identify potential errors, patients need to be able to understand the information contained in their EHRs. Objective: The aim of this study was to assess patients' perceptions of their ability to understand the information contained in their EHRs and to analyze the main barriers to their understanding. Additionally, the main types of patient-reported errors were characterized. Methods: A cross-sectional web-based survey was undertaken between March 2017 and September 2017. A total of 682 registered users of the Care Information Exchange, a patient portal, with at least one access during the time of the study were invited to complete the survey containing both structured (multiple choice) and unstructured (free text) questions. The survey contained questions on patients' perceived ability to understand their EHR information and therefore, to identify errors. Free-text questions allowed respondents to expand on the reasoning for their structured responses and provide more detail about their perceptions of EHRs and identifying errors within them. Qualitative data were systematically reviewed by 2 independent researchers using the framework analysis method in order to identify emerging themes. Results: A total of 210 responses were obtained. The majority of the responses (123/210, 58.6\%) reported understanding of the information. The main barriers identified were information-related (medical terminology and knowledge and interpretation of test results) and technology-related (user-friendliness of the portal, information display). Inconsistencies relating to incomplete and incorrect information were reported in 12.4\% (26/210) of the responses. Conclusions: While the majority of the responses affirmed the understanding of the information contained within the EHRs, both technology and information-based barriers persist. There is a potential to improve the system design to better support opportunities for patients to identify errors. This is with the aim of improving the accuracy, quality, and timeliness of the information held in the EHRs and a mechanism to further engage patients in their health care. ", doi="10.2196/19074", url="https://formative.jmir.org/2021/2/e19074", url="http://www.ncbi.nlm.nih.gov/pubmed/33635277" } @Article{info:doi/10.2196/23493, author="Beal, L. Lauren and Kolman, M. Jacob and Jones, L. Stephen and Khleif, Aroub and Menser, Terri", title="Quantifying Patient Portal Use: Systematic Review of Utilization Metrics", journal="J Med Internet Res", year="2021", month="Feb", day="25", volume="23", number="2", pages="e23493", keywords="patient portals", keywords="meaningful use", keywords="American Recovery and Reinvestment Act", keywords="Health Information Technology for Economic and Clinical Health Act", keywords="portal utilization", keywords="patient-generated health data", keywords="portal", keywords="systematic review", abstract="Background: Use of patient portals has been associated with positive outcomes in patient engagement and satisfaction. Portal studies have also connected portal use, as well as the nature of users' interactions with portals, and the contents of their generated data to meaningful cost and quality outcomes. Incentive programs in the United States have encouraged uptake of health information technology, including patient portals, by setting standards for meaningful use of such technology. However, despite widespread interest in patient portal use and adoption, studies on patient portals differ in actual metrics used to operationalize and track utilization, leading to unsystematic and incommensurable characterizations of use. No known review has systematically assessed the measurements used to investigate patient portal utilization. Objective: The objective of this study was to apply systematic review criteria to identify and compare methods for quantifying and reporting patient portal use. Methods: Original studies with quantifiable metrics of portal use published in English between 2014 and the search date of October 17, 2018, were obtained from PubMed using the Medical Subject Heading term ``Patient Portals'' and related keyword searches. The first search round included full text review of all results to confirm a priori data charting elements of interest and suggest additional categories inductively; this round was supplemented by the retrieval of works cited in systematic reviews (based on title screening of all citations). An additional search round included broader keywords identified during the full-text review of the first round. Second round results were screened at abstract level for inclusion and confirmed by at least two raters. Included studies were analyzed for metrics related to basic use/adoption, frequency of use, duration metrics, intensity of use, and stratification of users into ``super user'' or high utilizers. Additional categories related to provider (including care team/administrative) use of the portal were identified inductively. Additional analyses included metrics aligned with meaningful use stage 2 (MU-2) categories employed by the US Centers for Medicare and Medicaid Services and the association between the number of portal metrics examined and the number of citations and the journal impact factor. Results: Of 315 distinct search results, 87 met the inclusion criteria. Of the a priori metrics, plus provider use, most studies included either three (26 studies, 30\%) or four (23 studies, 26\%) metrics. Nine studies (10\%) only reported the patient use/adoption metric and only one study (1\%) reported all six metrics. Of the US-based studies (n=76), 18 (24\%) were explicitly motivated by MU-2 compliance; 40 studies (53\%) at least mentioned these incentives, but only 6 studies (8\%) presented metrics from which compliance rates could be inferred. Finally, the number of metrics examined was not associated with either the number of citations or the publishing journal's impact factor. Conclusions: Portal utilization measures in the research literature can fall below established standards for ``meaningful'' or they can substantively exceed those standards in the type and number of utilization properties measured. Understanding how patient portal use has been defined and operationalized may encourage more consistent, well-defined, and perhaps more meaningful standards for utilization, informing future portal development. ", doi="10.2196/23493", url="https://www.jmir.org/2021/2/e23493", url="http://www.ncbi.nlm.nih.gov/pubmed/33629962" } @Article{info:doi/10.2196/13992, author="Looten, Vincent and Neuraz, Antoine and Garcelon, Nicolas and Burgun, Anita and Chatellier, Gilles and Rance, Bastien", title="The Epidemiology of Patients' Email Addresses in a French University Hospital: Case-Control Study", journal="J Med Internet Res", year="2021", month="Feb", day="24", volume="23", number="2", pages="e13992", keywords="email", keywords="data privacy", keywords="health communication", abstract="Background: Health care professionals are caught between the wish of patients to speed up health-related communication via emails and the need for protecting health information. Objective: We aimed to analyze the demographic characteristics of patients providing an email, and study the distribution of emails' domain names. Methods: We used the information system of the European Hospital Georges Pompidou (HEGP) to identify patients who provided an email address. We used a 1:1 matching strategy to study the demographic characteristics of the patients associated with the presence of an email, and described the characteristics of the emails used (in terms of types of emails---free, business, and personal). Results: Overall, 4.22\% (41,004/971,822) of the total population of patients provided an email address. The year of last contact with the patient is the strongest driver of the presence of an email address (odds ratio [OR] 20.8, 95\% CI 18.9-22.9). Patients more likely to provide an email address were treated for chronic conditions and were more likely born between 1950 and 1969 (taking patients born before 1950 as reference [OR 1.60, 95\% CI 1.54-1.67], and compared to those born after 1990 [OR 0.56, 95\% CI 0.53-0.59]). Of the 41,004 email addresses collected, 37,779 were associated with known email providers, 31,005 email addresses were associated with Google, Microsoft, Orange, and Yahoo!, 2878 with business emails addresses, and 347 email addresses with personalized domain names. Conclusions: Emails have been collected only recently in our institution. The importance of the year of last contact probably reflects this recent change in contact information collection policy. The demographic characteristics and especially the age distribution are likely the result of a population bias in the hospital: patients providing email are more likely to be treated for chronic diseases. A risk analysis of the use of email revealed several situations that could constitute a breach of privacy that is both likely and with major consequences. Patients treated for chronic diseases are more likely to provide an email address, and are also more at risk in case of privacy breach. Several common situations could expose their private information. We recommend a very restrictive use of the emails for health communication. ", doi="10.2196/13992", url="https://www.jmir.org/2021/2/e13992", url="http://www.ncbi.nlm.nih.gov/pubmed/33625375" } @Article{info:doi/10.2196/24767, author="Elkefi, Safa and Yu, Zhongyuan and Asan, Onur", title="Online Medical Record Nonuse Among Patients: Data Analysis Study of the 2019 Health Information National Trends Survey", journal="J Med Internet Res", year="2021", month="Feb", day="22", volume="23", number="2", pages="e24767", keywords="online medical records", keywords="cancer", keywords="patient portals", keywords="communication", keywords="medical records", keywords="health information", keywords="eHealth", abstract="Background: Online medical records are being used to organize processes in clinical and outpatient settings and to forge doctor-patient communication techniques that build mutual understanding and trust. Objective: We aimed to understand the reasons why patients tend to avoid using online medical records and to compare the perceptions that patients have of online medical records based on demographics and cancer diagnosis. Methods: We used data from the Health Information National Trends Survey Cycle 3, a nationally representative survey, and assessed outcomes using descriptive statistics and chi-square tests. The patients (N=4328) included in the analysis had experienced an outpatient visit within the previous 12 months and had answered the online behavior question regarding their use of online medical records. Results: Patients who were nonusers of online medical records consisted of 58.36\% of the sample (2526/4328). The highest nonuser rates were for patients who were Hispanic (460/683, 67.35\%), patients who were non-Hispanic Black (434/653, 66.46\%), and patients who were older than 65 years (968/1520, 63.6\%). Patients older than 65 years were less likely to use online medical records (odds ratio [OR] 1.51, 95\% CI 1.24-1.84, P<.001). Patients who were White were more likely to use online medical records than patients who were Black (OR 1.71, 95\% CI 1.43-2.05, P<.001) or Hispanic (OR 1.65, 95\% CI 1.37-1.98, P<.001). Patients who were diagnosed with cancer were more likely to use online medical records compared to patients with no cancer (OR 1.31, 95\% CI 1.11-1.55, 95\% CI 1.11-1.55, P=.001). Among nonusers, older patients (?65 years old) preferred speaking directly to their health care providers (OR 1.76, 95\% CI 1.35-2.31, P<.001), were more concerned about privacy issues caused by online medical records (OR 1.79, 95\% CI 1.22-2.66, P<.001), and felt uncomfortable using the online medical record systems (OR 10.55, 95\% CI 6.06-19.89, P<.001) compared to those aged 18-34 years. Patients who were Black or Hispanic were more concerned about privacy issues (OR 1.42, 1.09-1.84, P=.007). Conclusions: Studies should consider social factors such as gender, race/ethnicity, and age when monitoring trends in eHealth use to ensure that eHealth use does not induce greater health status and health care disparities between people with different backgrounds and demographic characteristics. ", doi="10.2196/24767", url="https://www.jmir.org/2021/2/e24767", url="http://www.ncbi.nlm.nih.gov/pubmed/33616539" } @Article{info:doi/10.2196/22744, author="Lounsbury, Olivia and Roberts, Lily and Goodman, R. Jonathan and Batey, Philippa and Naar, Lenny and Flott, M. Kelsey and Lawrence-Jones, Anna and Ghafur, Saira and Darzi, Ara and Neves, Luisa Ana", title="Opening a ``Can of Worms'' to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study", journal="J Med Internet Res", year="2021", month="Feb", day="22", volume="23", number="2", pages="e22744", keywords="electronic health records", keywords="patient participation", keywords="data sharing", keywords="patient safety", keywords="data security", abstract="Background: Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals' perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed. Objective: This study aims to explore the views of the public, particularly their hopes and concerns, around health care data sharing. Methods: An original, immersive public engagement interactive experience was developed---The Can of Worms installation---in which participants were prompted to reflect about data sharing through listening to individual stories around health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. Results: Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement, and human-centered design to tell stories, collect perspectives, and spark conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants' hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement of personal access and ownership, increased interoperability and collaboration, generation of evidence for better and safer care, improved timeliness and efficiency, delivery of more personalized care, and equality. The five main fears identified included inadequate security and exploitation, data inaccuracy, distrust, discrimination and inequality, and less patient-centered care. Conclusions: This study sheds new light on the main hopes and fears of the public regarding health care data sharing. Importantly, our results highlight novel concerns from the public, particularly in terms of the impact on health disparities, both at international and local levels, and on delivering patient-centered care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use. ", doi="10.2196/22744", url="https://www.jmir.org/2021/2/e22744", url="http://www.ncbi.nlm.nih.gov/pubmed/33616532" } @Article{info:doi/10.2196/21615, author="Desai, Varma Anjali and Michael, L. Chelsea and Kuperman, J. Gilad and Jordan, Gregory and Mittelstaedt, Haley and Epstein, S. Andrew and Connor, MaryAnn and B Villar, Paula Rika and Bernal, Camila and Kramer, Dana and Davis, Elizabeth Mary and Chen, Yuxiao and Malisse, Catherine and Markose, Gigi and Nelson, E. Judith", title="A Novel Patient Values Tab for the Electronic Health Record: A User-Centered Design Approach", journal="J Med Internet Res", year="2021", month="Feb", day="17", volume="23", number="2", pages="e21615", keywords="electronic health record", keywords="health informatics", keywords="supportive care", keywords="palliative care", keywords="oncology", abstract="Background: The COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients' values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient's wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care. Objective: To provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center's EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation. Methods: We first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab's main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted. Results: We have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content. Conclusions: It is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction. ", doi="10.2196/21615", url="http://www.jmir.org/2021/2/e21615/", url="http://www.ncbi.nlm.nih.gov/pubmed/33595448" } @Article{info:doi/10.2196/21934, author="Schnitzer, Kristina and Cather, Corrine and Zvonar, Vanya and Dechert, Alyson and Plummer, Rachel and Lowman, Kelsey and Pachas, Gladys and Potter, Kevin and Evins, Eden Anne", title="Patient Experience and Predictors of Improvement in a Group Behavioral and Educational Intervention for Individuals With Diabetes and Serious Mental Illness: Mixed Methods Case Study", journal="J Participat Med", year="2021", month="Feb", day="12", volume="13", number="1", pages="e21934", keywords="mental disorders, severe", keywords="diabetes mellitus", keywords="delivery of health care, integrated", keywords="behavior and behavior mechanisms", keywords="patient education as topic", abstract="Background: In a previous study, participation in a 16-week reverse integrated care and group behavioral and educational intervention for individuals with diabetes and serious mental illness was associated with improved glycemic control (hemoglobin A1c) and BMI. To inform future implementation efforts, more information about the effective components of the intervention is needed. Objective: The goal of this study is to identify the aspects of the intervention participants reported to be helpful and to evaluate the predictors of outcomes. Methods: This study involved qualitative evaluation and post hoc quantitative analysis of a previous intervention. Qualitative data were collected using semistructured interviews with 69\% (24/35) of the individuals who attended 1 or more group sessions and 35\% (9/26) of the individuals who consented but attended no sessions. Quantitative mixed effects modeling was performed to test whether improved diabetes knowledge, diet, and exercise or higher group attendance predicted improved hemoglobin A1c and BMI. These interview and modeling outcomes were combined using a mixed methods case study framework and integrated thematically. Results: In qualitative interviews, participants identified the application of health-related knowledge gained to real-world situations, accountability for goals, positive reinforcement and group support, and increased confidence in prioritizing health goals as factors contributing to the success of the behavioral intervention. Improved knowledge of diabetes was associated with reduced BMI ($\beta$=--1.27, SD 0.40; P=.003). No quantitative variables examined were significantly associated with improved hemoglobin A1c levels. Conclusions: In this mixed methods analysis of predictors of success in a behavioral diabetes management program, group participants highlighted the value of positive reinforcement and group support, accountability for goals set, and real-world application of health-related knowledge gained. Improved diabetes knowledge was associated with weight loss. ", doi="10.2196/21934", url="http://jopm.jmir.org/2021/1/e21934/", url="http://www.ncbi.nlm.nih.gov/pubmed/33576747" } @Article{info:doi/10.2196/18750, author="Jackman, P. Kevon-Mark and Kane, Jeremy and Kharrazi, Hadi and Johnson, M. Renee and Latkin, Carl", title="Using the Patient Portal Sexual Health Instrument in Surveys and Patient Questionnaires Among Sexual Minority Men in the United States: Cross-sectional Psychometric Validation Study", journal="J Med Internet Res", year="2021", month="Feb", day="10", volume="23", number="2", pages="e18750", keywords="health information technology", keywords="sexual behavior", keywords="HIV", keywords="STI", keywords="patient portals", abstract="Background: Patient portal modules, including electronic personal health records, health education, and prescription refill ordering, may be leveraged to address the sexually transmitted infection (STI) burden, including HIV, among gay, bisexual, and other sexual minority men (SMM). Theoretical frameworks in the implementation sciences highlight examining constructs of innovation attributes and performance expectations as key determinants of behavioral intentions and the use of new web-based health technologies. However, behavioral intentions to use patient portals for HIV and other STI prevention and care among SMM is understudied. Objective: The aim of this study is to develop a brief instrument for measuring attitudes focused on using patient portals for STI prevention and care among a nationwide sample of SMM. Methods: A total of 12 items of the American Men's Internet Survey-Patient Portal Sexual Health Instrument (AMIS-PPSHI) were adapted from a previous study. Psychometric analyses of the AMIS-PPSHI items were conducted among a randomized subset of 2018 AMIS participants reporting web-based access to their health records (N=1375). Parallel analysis and inspection of eigenvalues in a principal component analysis (PCA) informed factor retention in exploratory factor analysis (EFA). After EFA, Cronbach $\alpha$ was used to examine the internal consistency of the scale and its subscales. Confirmatory factor analysis (CFA) was used to assess the goodness of fit of the final factor structure. We calculated the total AMIS-PPSHI scale scores for comparisons within group categories, including age, STI diagnosis history, recency of testing, serious mental illness, and anticipated health care stigma. Results: The AMIS-PPSHI scale resulting from EFA consisted of 12 items and had good internal consistency ($\alpha$=.84). The EFA suggested 3 subscales: sexual health engagement and awareness ($\alpha$=.87), enhancing dyadic communication ($\alpha$=.87), and managing sexual health care ($\alpha$=.79). CFA demonstrated good fit in the 3-factor PPSHI structure: root mean square error of approximation=0.061, comparative fit index=0.964, Tucker-Lewis index=0.953, and standardized root mean square residual=0.041. The most notable differences were lower scores on the enhanced dyadic communication subscale among people living with HIV. Conclusions: PPSHI is a brief instrument with strong psychometric properties that may be adapted for use in large surveys and patient questionnaires in other settings. Scores demonstrate that patient portals are favorable web-based solutions to deliver health services focused on STI prevention and care among SMM in the United States. More attention is needed to address the privacy implications of interpersonal use of patient portals outside of traditional health settings among persons with HIV. ", doi="10.2196/18750", url="http://www.jmir.org/2021/2/e18750/", url="http://www.ncbi.nlm.nih.gov/pubmed/33565987" } @Article{info:doi/10.2196/19910, author="Johansson, Victoria and Islind, Sigridur Anna and Lindroth, Tomas and Angenete, Eva and Gellerstedt, Martin", title="Online Communities as a Driver for Patient Empowerment: Systematic Review", journal="J Med Internet Res", year="2021", month="Feb", day="9", volume="23", number="2", pages="e19910", keywords="patient empowerment", keywords="online community", keywords="person-centered care", keywords="eHealth", keywords="systematic review", abstract="Background: The use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment. Objective: We synthesized research regarding how online communities contribute to patient empowerment to address the research question ``In what ways can participation in online communities support patient empowerment?'' by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development. Methods: A systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included. Results: Findings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients' usage. There was a mix between deductive (19/33, 58\%), inductive (11/33, 33\%), and a mixed approach (3/33, 9\%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64\%) were well-established and represented patients' initiatives. Conclusions: There is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels. ", doi="10.2196/19910", url="http://www.jmir.org/2021/2/e19910/", url="http://www.ncbi.nlm.nih.gov/pubmed/33560233" } @Article{info:doi/10.2196/23654, author="Lai, Claudia and Deber, Raisa and Jadad, R. Alejandro and Shachak, Aviv", title="Income-Generating Processes of Free Web-Based Digital Health Tools to Engage Patients: Qualitative Analysis", journal="J Med Internet Res", year="2021", month="Feb", day="3", volume="23", number="2", pages="e23654", keywords="digital health", keywords="patient engagement", keywords="eHealth", keywords="health information", abstract="Background: In recent years, digital tools have become a viable means for patients to address their health and information needs. Governments and health care organizations are offering digital tools such as self-assessment tools, symptom tracking tools, or chatbots. Other sources of digital tools, such as those offered through patient platforms, are available on the internet free of charge. We define patient platforms as health-specific websites that offer tools to anyone with internet access to engage them in their health care process with peer networks to support their learning. Although numerous social media platforms engage users without up-front charges, patient platforms are specific to health. As little is known about their business model, there is a need to understand what else these platforms are trying to achieve beyond supporting patients so that patients can make informed decisions about the benefits and risks of using the digital tools they offer. Objective: The aim of this study is to explore what patient platforms are trying to achieve beyond supporting patients and how their digital tools can be used to generate income. Methods: Textual and visual data collected from a purposeful selection of 11 patient platforms from September 2013 to August 2014 were analyzed using framework analysis. Data were systematically and rigorously coded and categorized according to key issues and themes by following 5 steps: familiarizing, identifying a thematic framework, indexing, charting, and mapping and interpretation. We used open coding to identify additional concepts not captured in the initial thematic framework. This paper reports on emergent findings on the business models of the platforms and their income-generating processes. Results: Our analysis revealed that in addition to patients, the platforms support other parties with interests in health and information exchanges. Patient platforms did not charge up-front fees but generated income from other sources, such as advertising, sponsorship, marketing (eg, sending information to users on behalf of sponsors or providing means for sponsors to reach patients directly), supporting other portals, and providing research services. Conclusions: This study reports on the mechanisms by which some patient platforms generate income to support their operations, gain profit, or both. Although income-generating processes exist elsewhere on social media platforms in general, they pose unique challenges in the health context because digital tools engage patients in health and information exchanges. This study highlights the need to minimize the potential for unintended consequences that can pose health risks to patients or can lead to increased health expenses. By understanding other interests that patient platforms support, our findings point to important policy implications, such as whether (and how) authorities might protect users from processes that may not always be in their best interests and can potentially incur costs to the health system. ", doi="10.2196/23654", url="http://www.jmir.org/2021/2/e23654/", url="http://www.ncbi.nlm.nih.gov/pubmed/33533722" } @Article{info:doi/10.2196/21452, author="Small, S. Serena and Hohl, M. Corinne and Balka, Ellen", title="Patient Perspectives on Health Data Privacy and Implications for Adverse Drug Event Documentation and Communication: Qualitative Study", journal="J Med Internet Res", year="2021", month="Jan", day="20", volume="23", number="1", pages="e21452", keywords="health information technology", keywords="adverse drug events", keywords="privacy of patient data", abstract="Background: Adverse drug events are unintended and harmful effects of medication use. Using existing information and communication technologies (ICTs) to increase information sharing about adverse drug events may improve patient care but can introduce concerns about data privacy. Objective: This study aims to examine the views of patients and their caregivers about data protection when using ICTs to communicate adverse drug event information to improve patient safety. Methods: We conducted an exploratory qualitative study. A total of 4 focus groups were held among patients who had experienced or were at risk of experiencing an adverse drug event, their family members, and their caregivers. We recruited participants through multiple avenues and iteratively analyzed the data using situational analysis. Results: Of the 47 participants recruited, 28 attended our focus groups. We identified 3 primary themes. First, participants felt that improved information sharing about adverse drug events within their circle of care would likely improve care. Second, participants were concerned about data handling and inappropriate access but believed that the benefits of information sharing outweighed the risks of privacy breaches. Finally, participants were more concerned about data privacy in the context of stigmatized health conditions. Conclusions: Current conditions for maintaining health data privacy are consistent with participants' preferences, despite the fact that health data are susceptible to breaches and mismanagement. Information sharing that increases patient safety may justify potential privacy risks. Greater attention to patient concerns and the effect of social and contextual concerns in the design and implementation of health information technologies may increase patient confidence in the privacy of their information. ", doi="10.2196/21452", url="http://www.jmir.org/2021/1/e21452/", url="http://www.ncbi.nlm.nih.gov/pubmed/33470936" } @Article{info:doi/10.2196/17500, author="Abd-Alrazaq, Alaa and Safi, Zeineb and Bewick, M. Bridgette and Househ, Mowafa and Gardner, H. Peter", title="Patients' Perspectives About Factors Affecting Their Use of Electronic Personal Health Records in England: Qualitative Analysis", journal="J Med Internet Res", year="2021", month="Jan", day="13", volume="23", number="1", pages="e17500", keywords="electronic personal health records", keywords="tethered personal health records", keywords="patient portal", keywords="patient online", keywords="technology acceptance", keywords="technology adoption", keywords="qualitative research", keywords="mobile phone", abstract="Background: General practices (GPs) in England have recently introduced a nationwide electronic personal health record (ePHR) system called Patient Online or GP online services, which allows patients to view parts of their medical records, book appointments, and request prescription refills. Although this system is free of charge, its adoption rates are low. To improve patients' adoption and implementation success of the system, it is important to understand the factors affecting their use of the system. Objective: The aim of this study is to explore patients' perspectives of factors affecting their use of ePHRs in England. Methods: A cross-sectional survey was carried out between August 21 and September 26, 2017. A questionnaire was used in this survey to collect mainly quantitative data through closed-ended questions in addition to qualitative data through an open-ended question. A convenience sample was recruited in 4 GPs in West Yorkshire, England. Given that the quantitative data were analyzed in a previous study, we analyzed the qualitative data using thematic analysis. Results: Of the 800 eligible patients invited to participate in the survey, 624 (78.0\%) returned a fully completed questionnaire. Of those returned questionnaires, the open-ended question was answered by 136/624 (21.8\%) participants. A total of 2 meta-themes emerged from participants' responses. The first meta-theme comprises 5 themes about why patients do not use Patient Online: concerns about using Patient Online, lack of awareness of Patient Online, challenges regarding internet and computers, perceived characteristics of nonusers, and preference for personal contact. The second meta-theme contains 1 theme about why patients use Patient Online: encouraging features of Patient Online. Conclusions: The challenges and concerns that impede the use of Patient Online seem to be of greater importance than the facilitators that encourage its use. There are practical considerations that, if incorporated into the system, are likely to improve its adoption rate: Patient Online should be useful, easy to use, secure, and easy to access. Different channels should be used to increase the awareness of the system, and GPs should ease registration with the system and provide manuals, training sessions, and technical support. More research is needed to assess the effect of the new factors found in this study (eg, lack of trust, difficulty registering with Patient Online) and factors affecting the continuing use of the system. ", doi="10.2196/17500", url="http://www.jmir.org/2021/1/e17500/", url="http://www.ncbi.nlm.nih.gov/pubmed/33439126" } @Article{info:doi/10.2196/24733, author="Zhang, Di and Hu, Hongchao and Shi, Zhen and Li, Biao", title="Perceived Needs Versus Predisposing/Enabling Characteristics in Relation to Internet Cancer Information Seeking Among the US and Chinese Public: Comparative Survey Research", journal="J Med Internet Res", year="2021", month="Jan", day="11", volume="23", number="1", pages="e24733", keywords="HINTS", keywords="health information seeking behavior (HISB)", keywords="China", keywords="United States", keywords="comparative research", keywords="cultural sensitivity", abstract="Background: Since the rise of the internet, online health information seeking has become a worldwide phenomenon. However, health and health communication are inherently culture bound. A data-driven cross-country comparison enables us to better understand how cultural factors moderate the association between individual-level determinants and online health information seeking. Objective: The objective of the study was to examine similarities and differences in determinants of internet cancer information seeking between the US and Chinese general public (excluding cancer patients and survivors) under the framework of a behavioral model of health services use. Methods: This study used Health Information National Trends Survey (HINTS) 2017 (US data) and HINTS-China 2017 data to answer the research question. It focused on people with no cancer history and with internet access. For the HINTS 2017, the sample size was 2153; for the HINTS-China 2017, the sample size was 2358. To compare China and the United States, the researchers selected the same set of study variables for each dataset. Under the framework of the behavioral model of health services use, these predictors were predisposing factors, enabling factors, and need factors. Results: In terms of the predisposing factors, a higher age, college degree or above, being currently unemployed, and having a family history of cancer were associated with internet cancer information seeking for the Chinese respondents; none of these factors were related to information seeking for the US respondents, although a lower age was associated with information seeking. Regarding the enabling conditions, lower trust in family members and friends as reliable information sources was the only factor associated with information seeking for the Chinese respondents, while no enabling factor was related to information seeking for the US respondents. Regarding the need factors, perceived health status was not related to information seeking for the Chinese respondents, while perception of poorer health condition was related to information seeking for the US respondents. Higher cancer fear was related to information seeking for both groups, but the magnitude of association was smaller for the Chinese respondents than for the US respondents. Conclusions: Overall, under the framework of the behavioral model of health services use, the results based on multivariate logistic regression reveal clear patterns of cross-country/cultural differences in the factors associated with internet cancer information seeking behaviors: predisposing characteristics and enabling conditions are more important in China, while perceived needs are more significant in the US. Such differences might reflect possible US-China differences in job environment (eg, job pressure) and culture (individualism vs collectivism and family structure). ", doi="10.2196/24733", url="http://www.jmir.org/2021/1/e24733/", url="http://www.ncbi.nlm.nih.gov/pubmed/33427668" } @Article{info:doi/10.2196/17655, author="Benjamins, Janine and Haveman-Nies, Annemien and Gunnink, Marian and Goudkuil, Annemieke and de Vet, Emely", title="How the Use of a Patient-Accessible Health Record Contributes to Patient-Centered Care: Scoping Review", journal="J Med Internet Res", year="2021", month="Jan", day="11", volume="23", number="1", pages="e17655", keywords="personal health records", keywords="patient portals", keywords="patient-centered care", keywords="patient-accessible records", abstract="Background: Worldwide, patient-centered care is becoming a widely used concept in medical practice, getting more and more attention because of its proven ability to improve quality of care and reduce costs. Although several studies show that patient-accessible electronic health records (PAEHRs) influence certain aspects of patient-centered care, the possible contribution of PAEHR implementation to patient-centered care as a comprehensive concept has not, to our knowledge, been structurally evaluated to date. Objective: The objective of this study is to review whether and how the use of PAEHRs contributes to patient-centered care both in general and among specific population groups. Methods: We followed PRISMA Extension for Scoping Reviews reporting guidelines. We identified literature in 5 databases, using the terms ``patient-accessible medical records,'' ``patient experiences,'' and ``professional experiences'' as key concepts. A total of 49 articles were included and analyzed with a charting code list containing 10 elements of patient-centered care. Results: Studies were diverse in design, country of origin, functionalities of the investigated PAEHR, and target population. Participants in all studies were adults. Most studies reported positive influence of PAEHR use on patient-centered care; patient accessible health records were appreciated for their opportunity to empower patients, inform patients about their health, and involve patients in their own care. There were mixed results for the extent to which PAEHRs affected the relation between patients and clinicians. Professionals and patients in mental health care held opposing views concerning the impact of transparency, where professionals appeared more worried about potential negative impact of PAEHRs on the patient-clinician relationship. Their worries seemed to be influenced by a reluctant attitude toward patient-centered care.Disadvantaged groups appeared to have less access to and make less use of patient-accessible records than the average population but experienced more benefits than the average population when they actually used PAEHRs. Conclusions: The review indicates that PAEHRs bear the potential to positively contribute to patient-centered care. However, concerns from professionals about the impact of transparency on the patient-clinician relationship as well as the importance of a patient-centered attitude need to be addressed. Potentially significant benefits for disadvantaged groups will be achieved only through easily accessible and user-friendly PAEHRs. ", doi="10.2196/17655", url="http://www.jmir.org/2021/1/e17655/", url="http://www.ncbi.nlm.nih.gov/pubmed/33427683" } @Article{info:doi/10.2196/18937, author="Luo, Yuhan and Oh, Young Chi and Jean, St Beth and Choe, Kyoung Eun", title="Interrelationships Between Patients' Data Tracking Practices, Data Sharing Practices, and Health Literacy: Onsite Survey Study", journal="J Med Internet Res", year="2020", month="Dec", day="22", volume="22", number="12", pages="e18937", keywords="consumer health informatics", keywords="patient-generated health data", keywords="self-tracking", keywords="doctor-patient data sharing", keywords="health literacy", keywords="surveys and questionnaires", abstract="Background: Although the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy---an important construct that captures an individual's ability to manage their health and to engage with their health care providers---has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients' data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices. Objective: This study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients. Methods: We surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients' retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants' health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients' immediate experiences situated within their clinic visit. Results: We found no evidence that tracking PGD was related to self-reports of having sufficient information to manage one's health; however, the number of data types participants tracked positively related to their self-assessed ability to actively engage with health care providers. Participants' data tracking practices and their health literacy did not relate to their data sharing practices; however, their ability to engage with health care providers positively related to their willingness to share their data with clinicians in the future. Participants reported several benefits of, and barriers to, sharing their PGD with clinicians. Conclusions: Although tracking PGD could help patients better engage with health care providers, it may not provide patients with sufficient information to manage their health. The gaps between tracking and sharing PGD with health care providers call for efforts to inform patients of how their data relate to their health and to facilitate efficient clinician-patient communication. To realize the full potential of PGD and to promote individuals' health literacy, empowering patients to effectively track and share their PGD is important---both technologies and health care providers can play important roles. ", doi="10.2196/18937", url="http://www.jmir.org/2020/12/e18937/", url="http://www.ncbi.nlm.nih.gov/pubmed/33350960" } @Article{info:doi/10.2196/18655, author="Schmalz, Oliver and Jacob, Christine and Ammann, Johannes and Liss, Blasius and Iivanainen, Sanna and Kammermann, Manuel and Koivunen, Jussi and Klein, Alexander and Popescu, Andrei Razvan", title="Digital Monitoring and Management of Patients With Advanced or Metastatic Non-Small Cell Lung Cancer Treated With Cancer Immunotherapy and Its Impact on Quality of Clinical Care: Interview and Survey Study Among Health Care Professionals and Patients", journal="J Med Internet Res", year="2020", month="Dec", day="21", volume="22", number="12", pages="e18655", keywords="advanced or metastatic non-small cell lung cancer", keywords="cancer immunotherapy", keywords="digital patient monitoring", keywords="drug- and indication-specific cancer immunotherapy module", keywords="eHealth", keywords="mHealth", keywords="quality of patient care", keywords="patient-reported outcomes", keywords="real-time symptom reporting", keywords="user experience", abstract="Background: Cancer immunotherapy (CIT), as a monotherapy or in combination with chemotherapy, has been shown to extend overall survival in patients with locally advanced or metastatic non-small cell lung cancer (NSCLC). However, patients experience treatment-related symptoms that they are required to recall between hospital visits. Digital patient monitoring and management (DPMM) tools may improve clinical practice by allowing real-time symptom reporting. Objective: This proof-of-concept pilot study assessed patient and health care professional (HCP) adoption of our DPMM tool, which was designed specifically for patients with advanced or metastatic NSCLC treated with CIT, and the tool's impact on clinical care. Methods: Four advisory boards were assembled in order to co-develop a drug- and indication-specific CIT (CIT+) module, based on a generic CIT DPMM tool from Kaiku Health, Helsinki, Finland. A total of 45 patients treated with second-line single-agent CIT (ie, atezolizumab or otherwise) for advanced or metastatic NSCLC, as well as HCPs, whose exact number was decided by the clinics, were recruited from 10 clinics in Germany, Finland, and Switzerland between February and May 2019. All clinics were provided with the Kaiku Health generic CIT DPMM tool, including our CIT+ module. Data on user experience, overall satisfaction, and impact of the tool on clinical practice were collected using anonymized surveys---answers ranged from 1 (low agreement) to 5 (high agreement)---and HCP interviews; surveys and interviews consisted of closed-ended Likert scales and open-ended questions, respectively. The first survey was conducted after 2 months of DPMM use, and a second survey and HCP interviews were conducted at study end (ie, after ?3 months of DPMM use); only a subgroup of HCPs from each clinic responded to the surveys and interviews. Survey data were analyzed quantitatively; interviews were recorded, transcribed verbatim, and translated into English, where applicable, for coding and qualitative thematic analysis. Results: Among interim survey respondents (N=51: 13 [25\%] nurses, 11 [22\%] physicians, and 27 [53\%] patients), mean rankings of the tool's seven usability attributes ranged from 3.2 to 4.4 (nurses), 3.7 to 4.5 (physicians), and 3.7 to 4.2 (patients). At the end-of-study survey (N=48: 19 [40\%] nurses, 8 [17\%] physicians, and 21 [44\%] patients), most respondents agreed that the tool facilitated more efficient and focused discussions between patients and HCPs (nurses and patients: mean rating 4.2, SD 0.8; physicians: mean rating 4.4, SD 0.8) and allowed HCPs to tailor discussions with patients (mean rating 4.35, SD 0.65). The standalone tool was well integrated into HCP daily clinical workflow (mean rating 3.80, SD 0.75), enabled workflow optimization between physicians and nurses (mean rating 3.75, SD 0.80), and saved time by decreasing phone consultations (mean rating 3.75, SD 1.00) and patient visits (mean rating 3.45, SD 1.20). Workload was the most common challenge of tool use among respondents (12/19, 63\%). Conclusions: Our results demonstrate high user satisfaction and acceptance of DPMM tools by HCPs and patients, and highlight the improvements to clinical care in patients with advanced or metastatic NSCLC treated with CIT monotherapy. However, further integration of the tool into the clinical information technology data flow is required. Future studies or registries using our DPMM tool may provide insights into significant effects on patient quality of life or health-economic benefits. ", doi="10.2196/18655", url="http://www.jmir.org/2020/12/e18655/", url="http://www.ncbi.nlm.nih.gov/pubmed/33346738" } @Article{info:doi/10.2196/24326, author="Kim, Min Su and Kim, Taerim and Cha, Chul Won and Lee, Jae-Ho and Kwon, Ho In and Choi, Yuri and Kim, June-Sung", title="User Experience of Mobile Personal Health Records for the Emergency Department: Mixed Methods Study", journal="JMIR Mhealth Uhealth", year="2020", month="Dec", day="15", volume="8", number="12", pages="e24326", keywords="personal health records", keywords="mobile health", keywords="patient engagement", abstract="Background: Personal health records (PHRs) can be useful in the emergency department, as they provide patient information in an accurate and timely manner and enable it to be used actively. This has an effect on patients' health outcomes and patient experience. Despite the importance of PHRs in emergencies, there are only a few studies related to PHRs in emergencies that evaluate patient experience. Objective: This study aims to introduce the novel mobile PHR (mPHR) platform to emergency environments and assess user experience. Methods: The study was conducted from October 2019 to November 2019. In total, 1000 patients or carers in the emergency departments of 3 hospitals were provided an application-based service called FirstER, which was developed to collect and utilize medical information for patients in the emergency department. This study was performed as a mixed methods study. After using FirstER, we investigated its usability and conducted a survey on the experience of obtaining medical information with a legacy system and with FirstER. Additionally, we interviewed 24 patients to gain insight into their experiences regarding medical information using FirstER. For the quantitative analysis, the survey results were analyzed using descriptive statistics (mean and standard deviation). For the qualitative analysis, we determined the keywords and their frequencies from each survey question and interview question. Results: In total, 1000 participants, consisting of both patients and carers, were recruited in this study. Their mean age was 41.4 (SD 13.3) years. We ascertained participants' satisfaction with FirstER and their mPHR needs through a survey and an in-depth interview. With the current system, participants were not well aware of their health conditions and medical information, and they were passive in the use of their medical information and treatment. However, they wanted their medical information for several reasons, such as information sharing and managing their health conditions. FirstER provided participants with their needed information and an easy way to access it. The mean System Usability Scale (SUS) value was 67.1 (SD 13.8), which was considered very near to acceptable. Conclusions: This study is the first to implement mPHRs in the emergency department of large tertiary hospitals in the Republic of Korea. FirstER was found to enhance user experience in emergencies, as it provided necessary medical information and proper user experience. Moreover, the average SUS was 67.1, which means that participants found FirstER to be very near to acceptable. This is very encouraging in that FirstER was developed within a very short time, and it was a pilot study. Trial Registration: Clinicaltrials.gov NCT04180618; https://clinicaltrials.gov/ct2/show/NCT04180618 ", doi="10.2196/24326", url="http://mhealth.jmir.org/2020/12/e24326/", url="http://www.ncbi.nlm.nih.gov/pubmed/33320102" } @Article{info:doi/10.2196/23860, author="Millenson, Louis Michael", title="Does a Pandemic Preempt Participatory Medicine?", journal="J Participat Med", year="2020", month="Dec", day="14", volume="12", number="4", pages="e23860", keywords="participatory medicine", keywords="COVID-19", keywords="pandemic", keywords="Fitbit", keywords="DETECT study, Body Politic", keywords="wearables", keywords="sensors", keywords="patient-generated health data", keywords="shared decision making", doi="10.2196/23860", url="http://jopm.jmir.org/2020/4/e23860/", url="http://www.ncbi.nlm.nih.gov/pubmed/33157521" } @Article{info:doi/10.2196/18046, author="Martin, Carmel and Hinkley, Narelle and Stockman, Keith and Campbell, Donald", title="Capitated Telehealth Coaching Hospital Readmission Service in Australia: Pragmatic Controlled Evaluation", journal="J Med Internet Res", year="2020", month="Dec", day="1", volume="22", number="12", pages="e18046", keywords="telehealth", keywords="funding model", keywords="evaluation", keywords="health services research", keywords="potentially preventable hospitalizations, medical informatics", abstract="Background: MonashWatch is a telehealth public hospital outreach pilot service as a component of the Government of Victoria's statewide redesign initiative called HealthLinks: Chronic Care. Rather than only paying for hospitalizations, projected funding is released earlier to hospitals to allow them to reduce hospitalization costs. MonashWatch introduced a web-based app, Patient Journey Record System, to assess the risk of the journeys of a cohort of patients identified as frequent admitters. Telecare guides call patients using the Patient Journey Record System to flag potential deterioration. Health coaches (nursing and allied health staff) triage risk and adapt care for individuals. Objective: The aim was a pragmatic controlled evaluation of the impact of MonashWatch on the primary outcome of bed days for acute nonsurgical admissions in the intention-to-treat group versus the usual care group. The secondary outcome was hospital admission rates. The net promoter score was used to gauge satisfaction. Methods: Patients were recruited into an intention-to-treat group, which included active telehealth and declined/lost/died groups, versus a systematically sampled (4:1) usual care group. A rolling sample of 250-300 active telehealth patients was maintained from December 23, 2016 to June 23, 2019. The outcome---mean bed days in intervention versus control---was adjusted using analysis of covariance for age, gender, admission type, and effective days active in MonashWatch. Time-series analysis tested for trends in change patterns. Results: MonashWatch recruited 1373 suitable patients who were allocated into the groups: usual care (n=293) and intention-to-treat (n=1080; active telehealth: 471/1080, 43.6\%; declined: 485, 44.9\%; lost to follow-up: 178 /1080, 10.7\%; died: 8/1080, 0.7\%). Admission frequency of intention-to-treat compared to that of the usual care group did not significantly improve (P=.05), with a small number of very frequent admitters in the intention-to-treat group. Age, MonashWatch effective days active, and treatment group independently predicted bed days. The analysis of covariance demonstrated a reduction in bed days of 1.14 (P<.001) in the intention-to-treat group compared with that in the usual care group, with 1236 bed days estimated savings. Both groups demonstrated regression-to-the-mean. The downward trend in improved bed days was significantly greater (P<.001) in the intention-to-treat group (Sen slope --406) than in the usual care group (Sen slope --104). The net promoter score was 95\% in the active telehealth group compared with typical hospital scores of 77\%. Conclusions: Clinically and statistically meaningful reductions in acute hospital bed days in the intention-to-treat group when compared to that of the usual care group were demonstrated (P<.001), although admission frequency was unchanged with more short stay admissions in the intention-to-treat group. Nonrandomized control selection was a limitation. Nonetheless, MonashWatch was successful in the context of the HealthLinks: Chronic Care capitation initiative and is expanding. ", doi="10.2196/18046", url="https://www.jmir.org/2020/12/e18046", url="http://www.ncbi.nlm.nih.gov/pubmed/33258781" } @Article{info:doi/10.2196/22307, author="Shimada, L. Stephanie and Zocchi, S. Mark and Hogan, P. Timothy and Kertesz, G. Stefan and Rotondi, J. Armando and Butler, M. Jorie and Knight, J. Sara and DeLaughter, Kathryn and Kleinberg, Felicia and Nicklas, Jeff and Nazi, M. Kim and Houston, K. Thomas", title="Impact of Patient-Clinical Team Secure Messaging on Communication Patterns and Patient Experience: Randomized Encouragement Design Trial", journal="J Med Internet Res", year="2020", month="Nov", day="18", volume="22", number="11", pages="e22307", keywords="patient portal adoption", keywords="secure messaging", keywords="communication", keywords="provider autonomy support", keywords="patient experience", keywords="patient portal", keywords="continuous care", keywords="patient", keywords="design", keywords="effectiveness", keywords="engagement", abstract="Background: Although secure messaging (SM) between patients and clinical team members is a recommended component of continuous care, uptake by patients remains relatively low. We designed a multicomponent Supported Adoption Program (SAP) to increase SM adoption among patients using the Veterans Health Administration (VHA) for primary care. Objective: Our goals were to (1) conduct a multisite, randomized, encouragement design trial to test the effectiveness of an SAP designed to increase patient engagement with SM through VHA's online patient portal (My HealtheVet [MHV]) and (2) evaluate the impact of the SAP and patient-level SM adoption on perceived provider autonomy support and communication. Patient-reported barriers to SM adoption were also assessed. Methods: We randomized 1195 patients at 3 VHA facilities who had MHV portal accounts but had never used SM. Half were randomized to receive the SAP, and half served as controls receiving usual care. The SAP consisted of encouragement to adopt SM via mailed educational materials, proactive SM sent to patients, and telephone-based motivational interviews. We examined differences in SM adoption rates between SAP recipients and controls at 9 months and 21 months. Follow-up telephone surveys were conducted to assess perceived provider autonomy support and self-report of telephone communication with clinical teams. Results: Patients randomized to the SAP had significantly higher rates of SM adoption than the control group (101/595, 17.0\% vs 40/600, 6.7\%; P<.001). Most adopters in the SAP sent their first message without a motivational interview (71/101, 70.3\%). The 10-percentage point difference in adoption persisted a full year after the encouragement ended (23.7\%, 142/600 in the SAP group vs 13.5\%, 80/595 in the control group, P<.001). We obtained follow-up survey data from 49.54\% (592/1195) of the participants. SAP participants reported higher perceived provider autonomy support (5.7 vs 5.4, P=.007) and less telephone use to communicate with their provider (68.8\% vs 76.0\%, P=.05), compared to patients in the control group. Patient-reported barriers to SM adoption included self-efficacy (eg, not comfortable using a computer, 24\%), no perceived need for SM (22\%), and difficulties with portal password or login (17\%). Conclusions: The multicomponent SAP was successful in increasing use of SM 10 percentage points above standard care; new SM adopters reported improved perceptions of provider autonomy support and less use of the telephone to communicate with their providers. Still, despite the encouragement and technical assistance provided through the SAP, adoption rates were lower than anticipated, reaching only 24\% at 21 months (10\% above controls). Common barriers to adoption such as limited perceived need for SM may be more challenging to address and require different interventions than barriers related to patient self-efficacy or technical difficulties. Trial Registration: ClinicalTrials.gov NCT02665468; https://clinicaltrials.gov/ct2/show/NCT02665468 ", doi="10.2196/22307", url="https://www.jmir.org/2020/11/e22307", url="http://www.ncbi.nlm.nih.gov/pubmed/33206052" } @Article{info:doi/10.2196/18399, author="Latulippe, Karine and Hamel, Christine and Giroux, Dominique", title="Co-Design to Support the Development of Inclusive eHealth Tools for Caregivers of Functionally Dependent Older Persons: Social Justice Design", journal="J Med Internet Res", year="2020", month="Nov", day="9", volume="22", number="11", pages="e18399", keywords="caregivers", keywords="aged", keywords="help-seeking behavior", keywords="community-based participatory research", keywords="eHealth", keywords="telemedicine", keywords="health care disparities", abstract="Background: eHealth can help reduce social health inequalities (SHIs) as much as it can exacerbate them. Taking a co-design approach to the development of eHealth tools has the potential to ensure that these tools are inclusive. Although the importance of involving future users in the development of eHealth tools to reduce SHIs is highlighted in the scientific literature, the challenges associated with their participation question the benefits of this involvement as co-designers in a real-world context. Objective: On the basis of Amartya Sen's theoretical framework of social justice, the aim of this study is to explore how co-design can support the development of an inclusive eHealth tool for caregivers of functionally dependent older persons. Methods: This study is based on a social justice design and participant observation as part of a large-scale research project funded by the Ministry of Families as part of the Age-Friendly Quebec Program (Qu{\'e}bec Ami des A{\^i}n{\'e}s). The analysis was based on the method developed by Miles and Huberman and on Paill{\'e}'s analytical questioning method. Results: A total of 78 people participated in 11 co-design sessions in 11 Quebec regions. A total of 24 preparatory meetings and 11 debriefing sessions were required to complete this process. Co-designers participated in the creation of a prototype to support the search for formal services for caregivers. The majority of participants (except for 2) significantly contributed to the tool's designing. They also incorporated conversion factors to ensure the inclusiveness of the eHealth tool, such as an adequate level of digital literacy and respect for the caregiver's help-seeking process. In the course of the experiment, the research team's position regarding its role in co-design evolved from a neutral posture and promoting co-designer participation to one that was more pragmatic. Conclusions: The use of co-design involving participants at risk of SHIs does not guarantee innovation, but it does guarantee that the tool developed will comply with their process of help-seeking and their literacy level. Time issues interfere with efforts to carry out a democratic process in its ideal form. It would be useful to single out some key issues to guide researchers on what should be addressed in co-design discussions and what can be left out to make optimal use of this approach in a real-world context. ", doi="10.2196/18399", url="http://www.jmir.org/2020/11/e18399/", url="http://www.ncbi.nlm.nih.gov/pubmed/33164905" } @Article{info:doi/10.2196/20510, author="Thiessen, Maclean and Sinclair, Shane and Tang, A. Patricia and Raffin Bouchal, Shelley", title="Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory", journal="J Med Internet Res", year="2020", month="Oct", day="29", volume="22", number="10", pages="e20510", keywords="persons", keywords="personal autonomy", keywords="patient-centered care", keywords="health education", keywords="health information--seeking behavior", keywords="grounded theory", keywords="empowerment", keywords="cancer", keywords="qualitative research", keywords="adaptation, psychological", keywords="mobile phone", abstract="Background: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors. Objective: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs. Methods: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information. Results: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory. Conclusions: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice. ", doi="10.2196/20510", url="http://www.jmir.org/2020/10/e20510/", url="http://www.ncbi.nlm.nih.gov/pubmed/33118940" } @Article{info:doi/10.2196/21238, author="Sungur, Hande and Y?lmaz, Gizem Nida and Chan, Chu Brittany Ming and van den Muijsenbergh, C. Maria E. T. and van Weert, M. Julia C. and Schouten, C. Barbara", title="Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach", journal="J Med Internet Res", year="2020", month="Oct", day="26", volume="22", number="10", pages="e21238", keywords="cancer", keywords="patient participation", keywords="health services needs and demand", keywords="eHealth", keywords="migrants", keywords="physician-patient relations", keywords="culture", keywords="mobile phone", abstract="Background: Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising. Objective: This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer. Methods: The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice. Results: The patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool's ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients' rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future. Conclusions: Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group. ", doi="10.2196/21238", url="http://www.jmir.org/2020/10/e21238/", url="http://www.ncbi.nlm.nih.gov/pubmed/33104008" } @Article{info:doi/10.2196/19542, author="Azodo, Ijeoma and Williams, Robin and Sheikh, Aziz and Cresswell, Kathrin", title="Opportunities and Challenges Surrounding the Use of Data From Wearable Sensor Devices in Health Care: Qualitative Interview Study", journal="J Med Internet Res", year="2020", month="Oct", day="22", volume="22", number="10", pages="e19542", keywords="wearable sensor devices", keywords="health care", keywords="data", keywords="qualitative", abstract="Background: Wearable sensors connected via networked devices have the potential to generate data that may help to automate processes of care, engage patients, and increase health care efficiency. The evidence of effectiveness of such technologies is, however, nascent and little is known about unintended consequences. Objective: Our objective was to explore the opportunities and challenges surrounding the use of data from wearable sensor devices in health care. Methods: We conducted a qualitative, theoretically informed, interview-based study to purposefully sample international experts in health care, technology, business, innovation, and social sciences, drawing on sociotechnical systems theory. We used in-depth interviews to capture perspectives on development, design, and use of data from wearable sensor devices in health care, and employed thematic analysis of interview transcripts with NVivo to facilitate coding. Results: We interviewed 16 experts. Although the use of data from wearable sensor devices in health and care has significant potential in improving patient engagement, there are a number of issues that stakeholders need to negotiate to realize these benefits. These issues include the current gap between data created and meaningful interpretation in health and care contexts, integration of data into health care professional decision making, negotiation of blurring lines between consumer and medical care, and pervasive monitoring of health across previously disconnected contexts. Conclusions: Stakeholders need to actively negotiate existing challenges to realize the integration of data from wearable sensor devices into electronic health records. Viewing wearables as active parts of a connected digital health and care infrastructure, in which various business, personal, professional, and health system interests align, may help to achieve this. ", doi="10.2196/19542", url="http://www.jmir.org/2020/10/e19542/", url="http://www.ncbi.nlm.nih.gov/pubmed/33090107" } @Article{info:doi/10.2196/18303, author="Sanders, Remco and Araujo, B. Theo and Vliegenthart, Rens and van Eenbergen, C. Mies and van Weert, M. Julia C. and Linn, J. Annemiek", title="Patients' Convergence of Mass and Interpersonal Communication on an Online Forum: Hybrid Methods Analysis", journal="J Med Internet Res", year="2020", month="Oct", day="19", volume="22", number="10", pages="e18303", keywords="convergence", keywords="online health seeking", keywords="supervised machine learning", keywords="patient needs", keywords="machine learning", keywords="online forums", keywords="patients", keywords="media", abstract="Background: Patients are increasingly taking an active role in their health. In doing so, they combine both mass and interpersonal media to gratify their cognitive and affective needs (ie, convergence). Owing to methodological challenges when studying convergence, a detailed view of how patients are using different types of media for needs fulfillment is lacking. Objective: The aim of this study was to obtain insight into the frequency of reported convergence, how convergence affects what posters write online, motives for posting, and the needs posters are trying to fulfill. Methods: Using a hybrid method of content analysis and supervised machine learning, this study used naturally available data to fill this research gap. We analyzed opening posts (N=1708) of an online forum targeting cancer patients and their relatives (Kanker.nl). Results: Nearly one-third of the forum opening posts contained signs of convergence in mass or interpersonal media. Posts containing mass media references disclosed less personal information and were more geared toward community enhancement and sharing experiences compared to posts without convergence. Furthermore, compared to posts without signs of convergence, posts that included interpersonal media references disclosed more personal information, and posters were more likely to ask for the experiences of fellow users to fulfill their needs. Within posts containing signs of convergence, posts including interpersonal media references reported fewer shortages of information, disclosed more information about the disease, and were more active in seeking other posters' experiences compared to posts containing mass media references. Conclusions: The current study highlights the intertwining of media platforms for patients. The insights of this study can be used to adapt the health care system toward a new type of health information--seeking behavior in which one medium is not trusted to fulfill all needs. Instead, providers should incorporate the intertwinement of sources by providing patients with reliable websites and forums through which they can fulfill their needs. ", doi="10.2196/18303", url="https://www.jmir.org/2020/10/e18303", url="http://www.ncbi.nlm.nih.gov/pubmed/33074160" } @Article{info:doi/10.2196/17499, author="Abd-Alrazaq, Alaa and Alalwan, Abdallah Ali and McMillan, Brian and Bewick, M. Bridgette and Househ, Mowafa and AL-Zyadat, T. Alaa", title="Patients' Adoption of Electronic Personal Health Records in England: Secondary Data Analysis", journal="J Med Internet Res", year="2020", month="Oct", day="7", volume="22", number="10", pages="e17499", keywords="health records, personal", keywords="patient portal", keywords="medical informatics", abstract="Background: In England, almost all general practices (GPs) have implemented GP online services such as electronic personal health records (ePHRs) that allow people to schedule appointments, request repeat prescriptions, and access parts of their medical records. The overall adoption rate of GP online services has been low, reaching just 28\% in October 2019. In a previous study, Abd-Alrazaq et al adopted a model to assess the factors that influence patients' use of GP online services in England. According to the previous literature, the predictive power of the Abd-Alrazaq model could be improved by proposing new associations between the existing variables in the model. Objective: This study aims to improve the predictive power of the Abd-Alrazaq model by proposing new relationships between the existing variables in the model. Methods: The Abd-Alrazaq model was amended by proposing new direct, mediating, moderating, and moderated mediating effects. The amended model was examined using data from a previous study, which were collected by a cross-sectional survey of a convenience sample of 4 GPs in West Yorkshire, England. Structural equation modeling was used to examine the theoretical model and hypotheses. Results: The new model accounted for 53\% of the variance in performance expectancy (PE), 76\% of the variance in behavioral intention (BI), and 49\% of the variance in use behavior (UB). In addition to the significant associations found in the previous study, this study found that social influence (SI) and facilitating conditions (FCs) are associated with PE directly and BI indirectly through PE. The association between BI and UB was stronger for younger women with higher levels of education, income, and internet access. The indirect effects of effort expectancy (EE), perceived privacy and security (PPS), and SI on BI were statistically stronger for women without internet access, patients with internet access, and patients without internet access, respectively. The indirect effect of PPS on BI was stronger for patients with college education or diploma than for those with secondary school education and lower, whereas the indirect effect of EE on BI was stronger for patients with secondary school education or lower than for those with college education or a diploma. Conclusions: The predictive power of the Abd-Alrazaq model improved by virtue of new significant associations that were not examined before in the context of ePHRs. Further studies are required to validate the new model in different contexts and to improve its predictive power by proposing new variables. The influential factors found in this study should be considered to improve patients' use of ePHRs. ", doi="10.2196/17499", url="https://www.jmir.org/2020/10/e17499", url="http://www.ncbi.nlm.nih.gov/pubmed/33026353" } @Article{info:doi/10.2196/21214, author="Etingen, Bella and Amante, J. Daniel and Martinez, N. Rachael and Smith, M. Bridget and Shimada, L. Stephanie and Richardson, Lorilei and Patterson, Angela and Houston, K. Thomas and Frisbee, L. Kathleen and Hogan, P. Timothy", title="Supporting the Implementation of Connected Care Technologies in the Veterans Health Administration: Cross-Sectional Survey Findings from the Veterans Engagement with Technology Collaborative (VET-C) Cohort", journal="J Participat Med", year="2020", month="Sep", day="30", volume="12", number="3", pages="e21214", keywords="eHealth", keywords="mobile health", keywords="patient engagement", keywords="telehealth", keywords="veterans", abstract="Background: Widespread adoption, use, and integration of patient-facing technologies into the workflow of health care systems has been slow, thus limiting the realization of their potential. A growing body of work has focused on how best to promote adoption and use of these technologies and measure their impacts on processes of care and outcomes. This body of work currently suffers from limitations (eg, cross-sectional analyses, limited patient-generated data linked with clinical records) and would benefit from institutional infrastructure to enhance available data and integrate the voice of the patient into implementation and evaluation efforts. Objective: The Veterans Health Administration (VHA) has launched an initiative called the Veterans Engagement with Technology Collaborative cohort to directly address these challenges. This paper reports the process by which the cohort was developed and describes the baseline data being collected from cohort members. The overarching goal of the Veterans Engagement with Technology Collaborative cohort is to directly engage veterans in the evaluation of new VHA patient-facing technologies and in so doing, to create new infrastructure to support related quality improvement and evaluation activities. Methods: Inclusion criteria for veterans to be eligible for membership in the cohort included being an active user of VHA health care services, having a mobile phone, and being an established user of existing VHA patient-facing technologies as represented by use of the secure messaging feature of VHA's patient portal. Between 2017 and 2018, we recruited veterans who met these criteria and administered a survey to them over the telephone. Results: The majority of participants (N=2727) were male (2268/2727, 83.2\%), White (2226/2727, 81.6\%), living in their own apartment or house (2519/2696, 93.4\%), and had completed some college (1176/2701, 43.5\%) or an advanced degree (1178/2701, 43.6\%). Cohort members were 59.9 years old, on average. The majority self-reported their health status as being good (1055/2725, 38.7\%) or very good (524/2725, 19.2\%). Most cohort members owned a personal computer (2609/2725, 95.7\%), tablet computer (1616/2716, 59.5\%), and/or smartphone (2438/2722, 89.6\%). Conclusions: The Veterans Engagement with Technology Collaborative cohort is an example of a VHA learning health care system initiative designed to support the data-driven implementation of patient-facing technologies into practice and measurement of their impacts. With this initiative, VHA is building capacity for future, rapid, rigorous evaluation and quality improvement efforts to enhance understanding of the adoption, use, and impact of patient-facing technologies. ", doi="10.2196/21214", url="http://jopm.jmir.org/2020/3/e21214/", url="http://www.ncbi.nlm.nih.gov/pubmed/33044944" } @Article{info:doi/10.2196/19196, author="Pohlmann-Eden, Bernd and Eden, C. Silke", title="Document-Engineering Methodology in Health Care: An Innovative Behavioral Science--Based Approach to Improve Patient Empowerment", journal="JMIR Hum Factors", year="2020", month="Sep", day="28", volume="7", number="3", pages="e19196", keywords="document design", keywords="1-pager", keywords="empowerment", keywords="patient engagement", keywords="cognitive science", keywords="health care", keywords="cross-industry thinking", keywords="malpractice in health care", keywords="written information", doi="10.2196/19196", url="http://humanfactors.jmir.org/2020/3/e19196/", url="http://www.ncbi.nlm.nih.gov/pubmed/32986001" } @Article{info:doi/10.2196/19225, author="Jones, V. Helen and Smith, Harry and Cooksley, Tim and Jones, Philippa and Woolley, Toby and Gwyn Murdoch, Derick and Thomas, Dafydd and Foster, Betty and Wakefield, Valerie and Innominato, Pasquale and Mullard, Anna and Ghosal, Niladri and Subbe, Christian", title="Checklists for Complications During Systemic Cancer Treatment Shared by Patients, Friends, and Health Care Professionals: Prospective Interventional Cohort Study", journal="JMIR Mhealth Uhealth", year="2020", month="Sep", day="25", volume="8", number="9", pages="e19225", keywords="cancer", keywords="patient safety", keywords="checklist", keywords="quality of life", keywords="anxiety", keywords="depression", keywords="health economics", keywords="mHealth", keywords="smartphone", keywords="redundancy", abstract="Background: Advances in cancer management have been associated with an increased incidence of emergency presentations with disease- or treatment-related complications. Objective: This study aimed to measure the ability of patients and members of their social network to complete checklists for complications of systemic treatment for cancer and examine the impact on patient-centered and health-economic outcomes. Methods: A prospective interventional cohort study was performed to assess the impact of a smartphone app used by patients undergoing systemic cancer therapy and members of their network to monitor for common complications. The app was used by patients, a nominated ``safety buddy,'' and acute oncology services. The control group was made up of patients from the same institution. Measures were based on process (completion of checklists over 60 days), patient experience outcomes (Hospital Anxiety and Depression Scale and the General version of the Functional Assessment of Cancer Therapy at baseline, 1 month, and 2 months) and health-economic outcomes (usage of appointments in primary care and elective and unscheduled hospital admissions). Results: At the conclusion of the study, 50 patients had completed 2882 checklists, and their 50 ``safety buddies'' had completed 318 checklists. Near daily usage was maintained over the 60-day study period. When compared to a cohort of 50 patients with matching disease profiles from the same institution, patients in the intervention group had comparable changes in Hospital Anxiety and Depression Scale and General version of the Functional Assessment of Cancer Therapy. Patients in the Intervention Group required a third (32 vs 97 nights) of the hospital days with overnight stay compared to patients in the Control Group, though the difference was not significant. The question, ``I feel safer with the checklist,'' received a mean score of 4.27 (SD 0.87) on a Likert scale (1-5) for patients and 4.55 (SD 0.65) for family and friends. Conclusions: Patients undergoing treatment for cancer and their close contacts can complete checklists for common complications of systemic treatments and take an active role in systems supporting their own safety. A larger sample size will be needed to assess the impact on clinical outcomes and health economics. ", doi="10.2196/19225", url="http://mhealth.jmir.org/2020/9/e19225/", url="http://www.ncbi.nlm.nih.gov/pubmed/32975526" } @Article{info:doi/10.2196/16373, author="Wijesundara, G. Jessica and Ito Fukunaga, Mayuko and Ogarek, Jessica and Barton, Bruce and Fisher, Lloyd and Preusse, Peggy and Sundaresan, Devi and Garber, Lawrence and Mazor, M. Kathleen and Cutrona, L. Sarah", title="Electronic Health Record Portal Messages and Interactive Voice Response Calls to Improve Rates of Early Season Influenza Vaccination: Randomized Controlled Trial", journal="J Med Internet Res", year="2020", month="Sep", day="25", volume="22", number="9", pages="e16373", keywords="electronic health records", keywords="influenza vaccination", keywords="patient care", keywords="patient engagement", abstract="Background: Patient reminders for influenza vaccination, delivered via an electronic health record patient portal and interactive voice response calls, offer an innovative approach to engaging patients and improving patient care. Objective: The goal of this study was to test the effectiveness of portal and interactive voice response outreach in improving rates of influenza vaccination by targeting patients in early September, shortly after vaccinations became available. Methods: Using electronic health record portal messages and interactive voice response calls promoting influenza vaccination, outreach was conducted in September 2015. Participants included adult patients within a large multispecialty group practice in central Massachusetts. Our main outcome was electronic health record--documented early influenza vaccination during the 2015-2016 influenza season, measured in November 2015. We randomly assigned all active portal users to 1 of 2 groups: (1) receiving a portal message promoting influenza vaccinations, listing upcoming clinics, and offering online scheduling of vaccination appointments (n=19,506) or (2) receiving usual care (n=19,505). We randomly assigned all portal nonusers to 1 of 2 groups: (1) receiving interactive voice response call (n=15,000) or (2) receiving usual care (n=43,596). The intervention also solicited patient self-reports on influenza vaccinations completed outside the clinic. Self-reported influenza vaccination data were uploaded into the electronic health records to increase the accuracy of existing provider-directed electronic health record clinical decision support (vaccination alerts) but were excluded from main analyses. Results: Among portal users, 28.4\% (5549/19,506) of those randomized to receive messages and 27.1\% (5294/19,505) of the usual care group had influenza vaccinations documented by November 2015 (P=.004). In multivariate analysis of portal users, message recipients were slightly more likely to have documented vaccinations when compared to the usual care group (OR 1.07, 95\% CI 1.02-1.12). Among portal nonusers, 8.4\% (1262/15,000) of those randomized to receive calls and 8.2\% (3586/43,596) of usual care had documented vaccinations (P=.47), and multivariate analysis showed nonsignificant differences. Over half of portal messages sent were opened (10,112/19,479; 51.9\%), and over half of interactive voice response calls placed (7599/14,984; 50.7\%) reached their intended target, thus we attained similar levels of exposure to the messaging for both interventions. Among portal message recipients, 25.4\% of message openers (2570/10,112) responded to a subsequent question on receipt of influenza vaccination; among interactive voice response recipients, 72.5\% of those reached (5513/7599) responded to a similar question. Conclusions: Portal message outreach to a general primary care population achieved a small but statistically significant improvement in rates of influenza vaccination (OR 1.07, 95\% CI 1.02-1.12). Interactive voice response calls did not significantly improve vaccination rates among portal nonusers (OR 1.03, 95\% CI 0.96-1.10). Rates of patient engagement with both modalities were favorable. Trial Registration: ClinicalTrials.gov NCT02266277; https://clinicaltrials.gov/ct2/show/NCT02266277 ", doi="10.2196/16373", url="http://www.jmir.org/2020/9/e16373/", url="http://www.ncbi.nlm.nih.gov/pubmed/32975529" } @Article{info:doi/10.2196/15352, author="Yin, Rong and Neyens, M. David", title="Online Health Resource Use by Individuals With Inflammatory Bowel Disease: Analysis Using the National Health Interview Survey", journal="J Med Internet Res", year="2020", month="Sep", day="24", volume="22", number="9", pages="e15352", keywords="internet", keywords="searching behavior", keywords="access to information", keywords="inflammatory bowel disease", keywords="logistic regression model", keywords="National Health Interview Survey", abstract="Background: The internet has enabled convenient and efficient health information searching which is valuable for individuals with chronic conditions requiring some level of self-management. However, there is little research evaluating what factors may impact the use of the internet for health-related tasks for specific clinical populations, such as individuals with inflammatory bowel diseases. Objective: Our goal was to investigate the factors that influence internet use in acquiring health information by individuals with inflammatory bowel diseases. Specifically, we identified factors associated with internet searching behavior and using the internet for completing health-related tasks. Methods: We used 2016 National Health Interview Survey weighted data to develop logistic regression models to predict the likelihood that individuals with inflammatory bowel diseases would use the internet for 2 types of tasks: seeking health information through online searches and using the internet to perform health-related tasks including scheduling appointments and emailing care providers. Results: 2016 National Health Interview Survey weighted data include more than 3 million weighted adult respondents with inflammatory bowel diseases (approximately 1.29\% of adults in the weighted data set). Our results suggest that approximately 66.3\% of those with inflammatory bowel diseases reported using the internet at least once a day, and approximately 14.7\% reported being dissatisfied with their current health care. About 62.3\% of those with inflammatory bowel diseases reported that they had looked up health information online, 16.3\% of those with inflammatory bowel diseases reported that they had scheduled an appointment with a health care provider online, and 21.6\% reported having used a computer to communicate with a health provider by email. We found that women who were self-regulating their care were more likely to look up health information online than others. Both middle-aged and older adults with inflammatory bowel diseases who were unsatisfied with their current health care were less likely to look up health information online. Frequent internet users who were worried about medical costs were more likely to look up health information online. Similarly, the results from our statistical models suggest that individuals with inflammatory bowel diseases who were frequent internet users were more likely to use the internet for specific health-related tasks. Additionally, women with inflammatory bowel diseases who reported being married were less likely to use the internet for specific health-related tasks. Conclusions: For those with inflammatory bowel diseases, there are additional socioeconomic and behavioral factors that impact the use of the internet for health information and health-related tasks. Future research should evaluate how these factors moderate the use of the internet and identify how online resources can support clinical populations in ways that improve access to information, support health self-management, and subsequently improve health outcomes. ", doi="10.2196/15352", url="http://www.jmir.org/2020/9/e15352/", url="http://www.ncbi.nlm.nih.gov/pubmed/32969831" } @Article{info:doi/10.2196/20309, author="Holt, M. Jeana and Cusatis, Rachel and Winn, Aaron and Asan, Onur and Spanbauer, Charles and Williams, S. Joni and Flynn, E. Kathryn and Somai, Melek and Laud, Purushottam and Crotty, H. Bradley", title="The Impact of Previsit Contextual Data Collection on Patient-Provider Communication and Patient Activation: Study Protocol for a Randomized Controlled Trial", journal="JMIR Res Protoc", year="2020", month="Sep", day="23", volume="9", number="9", pages="e20309", keywords="physician-patient relations", keywords="consumer health informatics", keywords="patient participation", keywords="vulnerable populations", keywords="randomized controlled trial", keywords="patient-centered care", keywords="mobile phone", abstract="Background: Patient-centered care is respectful of and responsive to individual patient preferences, needs, and values. To provide patient-centered care, clinicians need to know and incorporate patients' context into their communication and care with patients. Patient contextual data (PCD) encompass social determinants of health and patients' needs, values, goals, and preferences relevant to their care. PCD can be challenging to collect as a routine component of the time-limited primary care visit. Objective: This study aims to determine if patient-provider communication and patient activation are different for patient users and patient nonusers of an electronic health record (EHR)--integrated PCD tool and assess if the impact of using PCD on patient-provider communication and patient activation differs for Black and White patients. Methods: We describe a randomized controlled trial of a prospective cohort of non-Hispanic White and Black patients who receive primary care services at a midwestern academic health care system in the United States. We will evaluate whether providing PCD through a consumer informatics tool enhances patient-provider communication, as measured by the Communication Assessment Tool, and we will evaluate patient activation, as measured by the Patient Activation Measure for PCD tool users and nonusers. Furthermore, owing to racial disparities in care and communication, we seek to determine if the adoption and use of the tool might narrow the differences between patient groups. Results: The trial was funded in November 2017 and received local ethics review approval in February 2019. The study began recruitment in April 2019 and enrollment concluded in October 2019 with 301 participants. The analysis was completed in May 2020, and trial results are expected to be published in winter 2020. Conclusions: Recently, there has been increased attention to the role of health information technology tools to enable patients to collaborate with providers through the sharing of PCD. The adoption of such tools may overcome the barriers of current EHRs by directly engaging patients to submit their contextual data. Effectively, these tools would support the EHR in providing a more holistic understanding of the patient. Research further supports that individuals who have robust digital engagement using consumer informatics tools have higher participation in treatment follow-up and self-care across populations. Therefore, it is critical to investigate interventions that elicit and share patients' social risks and care preferences with the health care team as a mechanism to improve individualized care and reduce the gap in health outcomes. Trial Registration: ClinicalTrials.gov NCT03766841; https://clinicaltrials.gov/ct2/show/NCT03766841 International Registered Report Identifier (IRRID): RR1-10.2196/20309 ", doi="10.2196/20309", url="http://www.researchprotocols.org/2020/9/e20309/", url="http://www.ncbi.nlm.nih.gov/pubmed/32965223" } @Article{info:doi/10.2196/18976, author="Alturkistani, Abrar and Qavi, Ambar and Anyanwu, Emeka Philip and Greenfield, Geva and Greaves, Felix and Costelloe, Ceire", title="Patient Portal Functionalities and Patient Outcomes Among Patients With Diabetes: Systematic Review", journal="J Med Internet Res", year="2020", month="Sep", day="22", volume="22", number="9", pages="e18976", keywords="personal health record", keywords="patient portal", keywords="electronic health records", keywords="online access", keywords="patient records", keywords="systematic review", abstract="Background: Patient portal use could help improve the care and health outcomes of patients with diabetes owing to functionalities, such as appointment booking, electronic messaging (e-messaging), and repeat prescription ordering, which enable patient-centered care and improve patient self-management of the disease. Objective: This review aimed to summarize the evidence regarding patient portal use (portals that are connected to electronic health care records) or patient portal functionality use (eg, appointment booking and e-messaging) and their reported associations with health and health care quality outcomes among adult patients with diabetes. Methods: We searched the MEDLINE, Embase, and Scopus databases and reported the review methodology using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Three independent reviewers screened titles and abstracts, and two reviewers assessed the full texts of relevant studies and performed data extraction and quality assessments of the included studies. We used the Cochrane Collaboration Risk of Bias Tool and the National Heart, Lung and Blood Institute (NHLBI) Study Quality Assessment Tool to assess the risk of bias of the included studies. Data were summarized through narrative synthesis. Results: Twelve studies were included in this review. Five studies reported overall patient portal use and its association with diabetes health and health care quality outcomes. Six studies reported e-messaging or email use--associated outcomes, and two studies reported prescription refill--associated outcomes. The reported health outcomes included the associations of patient portal use with blood pressure, low-density lipoprotein cholesterol, and BMI. Few studies reported health care utilization outcomes such as office visits, emergency department visits, and hospitalizations. A limited number of studies reported overall quality of care for patients with diabetes who used patient portals. Conclusions: The included studies mostly reported improved glycemic control outcomes for patients with diabetes who used patient portals. However, limitations of studying the effects of patient portals exist, which do not guarantee whether the outcomes reported are completely the result of patient portal use or if confounding factors exist. Randomized controlled trials and mixed-methods studies could help understand the mechanisms involved in health outcome improvements and patient portal use among patients with diabetes. Trial Registration: International Prospective Register of Systematic Reviews (PROSPERO) CRD42019141131; https://www.crd.york.ac.uk/prospero/display\_record.php?ID=CRD42019141131. International Registered Report Identifier (IRRID): RR2-10.2196/14975 ", doi="10.2196/18976", url="http://www.jmir.org/2020/9/e18976/", url="http://www.ncbi.nlm.nih.gov/pubmed/32960182" } @Article{info:doi/10.2196/19195, author="Wannheden, Carolina and Reven{\"a}s, {\AA}sa", title="How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study", journal="J Med Internet Res", year="2020", month="Sep", day="21", volume="22", number="9", pages="e19195", keywords="chronic care", keywords="Parkinson's disease", keywords="co-creation", keywords="co-design", keywords="participatory design", keywords="eHealth", keywords="mHealth", keywords="clinical decision support", abstract="Background: Worldwide, the number of people with Parkinson's disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. Objective: This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. Methods: Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. Results: The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84\%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86\% to 97\% per functionality). Conclusions: This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. International Registered Report Identifier (IRRID): RR2-10.2196/11278 ", doi="10.2196/19195", url="http://www.jmir.org/2020/9/e19195/", url="http://www.ncbi.nlm.nih.gov/pubmed/32955448" } @Article{info:doi/10.2196/19475, author="Lapadat, Laura and Balram, Anusha and Cheek, Joanna and Canas, Eugenia and Paquette, Andrea and and Michalak, E. Erin", title="Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research", journal="J Participat Med", year="2020", month="Sep", day="10", volume="12", number="3", pages="e19475", keywords="community-based participatory research", keywords="bipolar disorder", keywords="adolescent", keywords="young adult", keywords="youth", keywords="participatory research", abstract="Background: We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership---carried out by a team composed of academic, community, and youth partners---was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. Objective: The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. Methods: The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. Results: Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies. Conclusions: This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study. ", doi="10.2196/19475", url="http://jopm.jmir.org/2020/3/e19475/", url="http://www.ncbi.nlm.nih.gov/pubmed/33044943" } @Article{info:doi/10.2196/18481, author="Ma, Qianqian and Sun, Dongxu and Cui, Fangfang and Zhai, Yunkai and Zhao, Jie and He, Xianying and Shi, Jinming and Gao, Jinghong and Li, Mingyuan and Zhang, Wenjie", title="Impact of the Internet on Medical Decisions of Chinese Adults: Longitudinal Data Analysis", journal="J Med Internet Res", year="2020", month="Sep", day="3", volume="22", number="9", pages="e18481", keywords="internet", keywords="medical decision", keywords="health care provider choice", keywords="adult", keywords="longitudinal data analysis", keywords="hierarchical medical policy", abstract="Background: The internet has caused the explosive growth of medical information and has greatly improved the availability of medical knowledge. This makes the internet one of the main ways for residents to obtain medical information and knowledge before seeking medical treatment. However, little has been researched on how the internet affects medical decisions. Objective: The purpose of this study was to explore the associations between internet behaviors and medical decisions among Chinese adults aged 18 or over, including whether to go to the hospital and which level of medical institution to choose. Methods: With the adult residents (?18 years old) in 12 regions including urban and rural areas taken as the research objects, the differences in medical choices of adults with various characteristics were analyzed, and generalized linear mixed models were adopted to analyze the longitudinal data of the China Health Nutrition Survey from 2006 to 2015. Results: Adult groups with different ages, genders, education levels, regions, places of residence, severities of illness and injury, years of suffering from hypertension, and history of chronic diseases showed diverse medical decisions, and the differences were statistically significant (P<.05). After controlling for these potential confounding factors and taking self-care as the reference, the probability of Chinese adults who participated in online browsing activities selecting hospital care was 0.82 (95\% CI 0.69-0.98; P=.03) times that of residents who did not participate in online browsing activities. In terms of medical institution choices, adults who participated in online browsing activities were 1.86 (95\% CI 1.35-2.58; P<.001) times more likely to opt for municipal medical treatment than primary care. However, the effect of online browsing on the selection probability of county-level hospitals was not significant compared with primary hospitals (P=.59). Robust analysis verified that accessing the internet had a similar effect on Chinese adults' medical decisions. Conclusions: Chinese adults who use the internet are a little less likely to go to the hospital than self-care. The internet has broken down the barriers to obtain knowledge of common diseases and thus has a slight substitution effect of self-care on hospital care. Internet use may increase the probability of adults going to municipal hospitals. The rising tendency of visiting high-level medical institutions may be consequently exacerbated due to knowledge monopoly of severe and complicated diseases that is difficult to eliminate, and the increase in inconsistent and incomplete medical information online will blur the residents' cognitive boundary of common diseases and severe diseases. Exploring the substantive impact of the internet on medical decision making is of great significance for further rational planning and utilization of the internet, in order to guide patients to appropriate medical institution. ", doi="10.2196/18481", url="https://www.jmir.org/2020/9/e18481", url="http://www.ncbi.nlm.nih.gov/pubmed/32880581" } @Article{info:doi/10.2196/19517, author="Birkeland, F. S{\o}ren and Haakonsson, K. Anders and Pedersen, S. Susanne and Rottmann, Nina and Barry, J. Michael and M{\"o}ller, S{\"o}ren", title="Sociodemographic Representativeness in a Nationwide Web-Based Survey of the View of Men on Involvement in Health Care Decision-Making: Cross-Sectional Questionnaire Study", journal="J Med Internet Res", year="2020", month="Sep", day="2", volume="22", number="9", pages="e19517", keywords="research methodology", keywords="electronic data capture", keywords="internet-based survey", keywords="representativeness", keywords="generalizability", keywords="user involvement", keywords="patient satisfaction", keywords="bioethics", keywords="medical law", keywords="cancer", abstract="Background: Being able to generalize research findings to a broader population outside of the study sample is an important goal in surveys on the internet. We conducted a nationwide, cross-sectional, web-based survey with vignettes illustrating different levels of patient involvement to investigate men's preferences regarding participation in health care decision-making. Following randomization into vignette variants, we distributed the survey among men aged 45 to 70 years through the state-authorized digital mailbox provided by the Danish authorities for secure communication with citizens. Objective: This study aimed to investigate the sociodemographic representativeness of our sample of men obtained in a nationwide web-based survey using the digital mailbox. Methods: Response rate estimates were established, and comparisons were made between responders and nonresponders in terms of age profiles (eg, average age) and municipality-level information on sociodemographic characteristics. Results: Among 22,288 men invited during two waves, a total of 6756 (30.31\%) participants responded to the survey. In adjusted analyses, responders' characteristics mostly resembled those of nonresponders. Response rates, however, were significantly higher in older men (odds ratio [OR] 2.83 for responses among those aged 65-70 years compared with those aged 45-49 years, 95\% CI 2.58-3.11; P<.001) and in rural areas (OR 1.10 compared with urban areas, 95\% CI 1.03-1.18; P=.005). Furthermore, response rates appeared lower in areas with a higher tax base (OR 0.89 in the highest tertile, 95\% CI 0.81-0.98; P=.02). Conclusions: Overall, the general population of men aged 45 to 70 years was represented very well by the responders to our web-based survey. However, the imbalances identified highlight the importance of supplementing survey findings with studies of the representativeness of other characteristics of the sample like trait and preference features, so that proper statistical corrections can be made in upcoming analyses of survey responses whenever needed. ", doi="10.2196/19517", url="https://www.jmir.org/2020/9/e19517", url="http://www.ncbi.nlm.nih.gov/pubmed/32663149" } @Article{info:doi/10.2196/19056, author="Yang, Ching Shu and Hsu, Wan-Chen and Chiang, Chia-Hsun", title="The Associations Among Individual Factors, Media Literacy, and Dietary Supplement Use Among College Students: Cross-Sectional Study", journal="J Med Internet Res", year="2020", month="Aug", day="31", volume="22", number="8", pages="e19056", keywords="college student", keywords="dietary supplement", keywords="media literacy", keywords="ehealth literacy", abstract="Background: The mass media have been condemned for encouraging young people to take dietary supplements (DS). Media literacy, which includes authors and audiences (AA), messages and meanings (MM), and representation and reality (RR) domains, is a new approach to teaching young adults to make better informed health decisions. However, it is not clear which domains are the most important for media literacy education. Objective: The purpose of this study is to investigate the associations among individual factors, media literacy, and DS use. Methods: The survey instrument included demographic items, the DS Media Literacy Scale (DSMLS), and DS use items (users or nonusers, types of DS, current use of DS, and intention to use DS in the future). The DSMLS is an 11-item instrument designed to assess college students' AA, MM, and RR media literacy in relation to DS. A total of 467 Taiwanese college students participated in the study. Descriptive statistical analysis, logistic regression analysis, and multiple regression analysis were conducted. Results: A total of 338/467 (72.4\%) participants reported using DS, and 176/467 (37.7\%) consumed 3 or more supplements. Moreover, the MM media literacy domain was associated with having been a DS user (odds ratio 0.63, P=.002), current DS use ($\beta$=--.10, P=.02), and intention to use DS in the future ($\beta$=--.12, P=.011). Finally, perceived importance of health was positively related to current DS use ($\beta$=.18, P=.001) and intention to use DS in the future ($\beta$=.18, P=.001). Conclusions: This study showed that the majority of Taiwanese college students were DS users and used multiple types of supplements. Moreover, students with lower MM media literacy were more likely to be DS users, to take DS more frequently, and to have higher intentions for future frequent DS use. Finally, those who placed extreme importance on health were more likely to take DS frequently and have higher intentions for future frequent DS use. ", doi="10.2196/19056", url="http://www.jmir.org/2020/8/e19056/", url="http://www.ncbi.nlm.nih.gov/pubmed/32865500" } @Article{info:doi/10.2196/20623, author="Chen, Qin and Yan, Xiangbin and Zhang, Tingting", title="Converting Visitors of Physicians' Personal Websites to Customers in Online Health Communities: Longitudinal Study", journal="J Med Internet Res", year="2020", month="Aug", day="26", volume="22", number="8", pages="e20623", keywords="online health communities", keywords="conversion rate", keywords="multisource information", keywords="physician-generated information", keywords="patient-generated information", keywords="system-generated information", keywords="usage time", abstract="Background: With the dramatic development of Web 2.0, increasing numbers of patients and physicians are actively involved in online health communities. Despite extensive research on online health communities, the conversion rate from visitor to customer and its driving factors have not been discussed. Objective: The aim of this study was to analyze the conversion rate of online health communities and to explore the effects of multisource online health community information, including physician-generated information, patient-generated information, and system-generated information. Methods: An empirical study was conducted to examine the effects of physician-generated, patient-generated, and system-generated information on the conversion rate of physicians' personal websites by analyzing short panel data from 2112 physicians over five time periods in a Chinese online health community. Results: Multisource online health community information (ie, physician-generated, patient-generated, and system-generated information) positively affected the conversion rate. Physician-generated and patient-generated information showed a substitute relationship rather than a complementary relationship. In addition, the usage time of a personal website positively moderated patient-generated information, but negatively moderated physician-generated information. Conclusions: This study contributes to the electronic health literature by investigating the conversion rate of online health communities and the effect of multisource online health community information. This study also contributes to understanding the drivers of conversion rate on service websites, which can help to successfully improve the efficiency of online health communities. ", doi="10.2196/20623", url="http://www.jmir.org/2020/8/e20623/", url="http://www.ncbi.nlm.nih.gov/pubmed/32845248" } @Article{info:doi/10.2196/17459, author="Karni, Liran and Dalal, Koustuv and Memedi, Mevludin and Kalra, Dipak and Klein, Oskar Gunnar", title="Information and Communications Technology--Based Interventions Targeting Patient Empowerment: Framework Development", journal="J Med Internet Res", year="2020", month="Aug", day="26", volume="22", number="8", pages="e17459", keywords="empowerment", keywords="ICT intervention", keywords="digital health", keywords="eHealth", keywords="framework model", keywords="ICT patient empowerment model (ICT4PEM)", abstract="Background: Empowerment of patients is often an explicit goal of various information and communications technology (ICT) (electronic, digital) interventions where the patients themselves use ICT tools via the internet. Although several models of empowerment exist, a comprehensive and pragmatic framework is lacking for the development of such interventions. Objective: This study proposes a framework for digital interventions aiming to empower patients that includes a methodology that links objectives, strategies, and evaluation. Methods: This study is based on a literature review and iterated expert discussions including a focus group to formulate the proposed model. Our model is based on a review of various models of empowerment and models of technology intervention. Results: Our framework includes the core characteristics of the empowerment concept (control, psychological coping, self-efficacy, understanding, legitimacy, and support) as well as a set of empowerment consequences: expressed patient perceptions, behavior, clinical outcomes, and health systems effects. The framework for designing interventions includes strategies to achieve empowerment goals using different ICT services. Finally, the intervention model can be used to define project evaluations where the aim is to demonstrate empowerment. The study also included example indicators and associated measurement instruments. Conclusions: This framework, which includes definitions, can be useful for the design and evaluation of digital interventions targeting patient empowerment and assist in the development of methods to measure results in this dimension. Further evaluation in the form of interventional studies will be needed to assess the generalizability of the model. ", doi="10.2196/17459", url="http://www.jmir.org/2020/8/e17459/", url="http://www.ncbi.nlm.nih.gov/pubmed/32845245" } @Article{info:doi/10.2196/16138, author="Xie, Juan and Xie, Shi and Cheng, Ying and He, Zhe", title="Beliefs and Information Seeking in Patients With Cancer in Southwest China: Survey Study", journal="JMIR Cancer", year="2020", month="Aug", day="21", volume="6", number="2", pages="e16138", keywords="cancer information seeking", keywords="cancer belief", keywords="fatalism", keywords="southwest China", abstract="Background: Although previous studies have reported the cancer information-seeking behaviors among patients in high-income countries, the cancer information-seeking practices of patients living in low- and middle-income areas are less known. Objective: This study investigated the beliefs and information-seeking patterns of cancer patients in southwest China. Methods: A questionnaire was designed, and data were collected in two hospitals (N=285) in southwest China. Statistical analyses included bivariate analyses and regressions. Results: Patients' attitudes towards cancer fatalism were significantly influenced by marital status (P<.001), education (P<.001), and household income (P<.001). Moreover, endorsing fatalistic belief was positively associated with age (r=0.35, P<.001). The regression model showed that younger patients (odds ratio [OR] 0.96, 95\% CI 0.93-0.99) and those with higher education (OR 1.75, 95\% CI 1.09-2.81) were more likely to seek information. Additionally, patients who were less confident in getting information were more likely to find information (OR 1.70, 95\% CI 1.15-2.52), while fatalism belief was not significant in the regression (OR 0.65, 95\% CI 0.22-1.95). Conclusions: This study explored the information-seeking patterns of cancer patients in southwest China. It was found that many Chinese people endorsed cancer fatalism. These pessimistic beliefs about the potential to prevent and to cure cancer correlate with rather than cause cancer-related information seeking. However, self-efficacy about the confidence in finding needed cancer information was a significant predictor of information-seeking. ", doi="10.2196/16138", url="http://cancer.jmir.org/2020/2/e16138/", url="http://www.ncbi.nlm.nih.gov/pubmed/32821061" } @Article{info:doi/10.2196/17696, author="Kujala, Sari and Ammenwerth, Elske and Kolanen, Heta and Ervast, Minna", title="Applying and Extending the FITT Framework to Identify the Challenges and Opportunities of Successful eHealth Services for Patient Self-Management: Qualitative Interview Study", journal="J Med Internet Res", year="2020", month="Aug", day="12", volume="22", number="8", pages="e17696", keywords="interview", keywords="implementation", keywords="adoption", keywords="patient self-management", keywords="organization", abstract="Background: The number of public eHealth services that support patient self-management is rapidly increasing. However, the implementation of these eHealth services for self-management has encountered challenges. Objective: The purpose of this paper was to analyze the challenges and opportunities of implementing eHealth services for self-management by focusing on the fit between the technical solution and clinical use. Methods: We performed in-depth interviews with 10 clinical project coordinators and managers who were responsible for developing and implementing various eHealth services for self-management interventions in five university hospitals in Finland. The results were analyzed using content analysis and open coding. The Fit between Individuals, Task, and Technology (FITT) framework was used to interpret the findings. Results: The implementation of self-management services involved many challenges related to technical problems, health professional acceptance, patient motivation, and health organization and management. The implementers identified practices to manage the identified challenges, including improving the design of the technology, supporting health professionals in the adoption of the eHealth services, changing the work processes and tasks, involving patients, and collectively planning the implementation inside an organization. The findings could be mostly attributed to the dimensions of the FITT framework. Conclusions: The FITT framework helped to analyze the challenges related to the implementation, and most of them were related to poor fit. The importance of patients as stakeholders in eHealth services for patient self-management needs to be highlighted. Thus, we propose that patients should be added as a different type of individual dimension to the FITT framework. In addition, the framework could be extended to include organization and management in a new context dimension. ", doi="10.2196/17696", url="https://www.jmir.org/2020/8/e17696", url="http://www.ncbi.nlm.nih.gov/pubmed/32784175" } @Article{info:doi/10.2196/19013, author="Zrubka, Zsombor and Brito Fernandes, {\'O}scar and Baji, Petra and Hajdu, Ott{\'o} and Kovacs, Levente and Kringos, Dionne and Klazinga, Niek and Gul{\'a}csi, L{\'a}szl{\'o} and Brodszky, Valentin and Rencz, Fanni and P{\'e}ntek, M{\'a}rta", title="Exploring eHealth Literacy and Patient-Reported Experiences With Outpatient Care in the Hungarian General Adult Population: Cross-Sectional Study", journal="J Med Internet Res", year="2020", month="Aug", day="11", volume="22", number="8", pages="e19013", keywords="health literacy", keywords="eHealth literacy, patient-reported experience measures", keywords="patient-reported outcome measures", keywords="ambulatory care", keywords="shared decision making", keywords="Hungary", keywords="survey", abstract="Background: Digital health, which encompasses the use of information and communications technology in support of health, is a key driving force behind the cultural transformation of medicine toward people-centeredness. Thus, eHealth literacy, assisted by innovative digital health solutions, may support better experiences of care. Objective: The purpose of this study is to explore the relationship between eHealth literacy and patient-reported experience measures (PREMs) among users of outpatient care in Hungary. Methods: In early 2019, we conducted a cross-sectional survey on a large representative online sample recruited from the Hungarian general population. eHealth literacy was measured with the eHealth Literacy Scale (eHEALS). PREMs with outpatient care were measured with a set of questions recommended by the Organisation for Economic Co-operation and Development (OECD) for respondents who attended outpatient visit within 12 months preceding the survey. Bivariate relationships were explored via polychoric correlation, the Kruskal--Wallis test, and chi-square test. To capture nonlinear associations, after controlling covariates, we analyzed the relationship between eHEALS quartiles and PREMs using multivariate probit, ordinary least squares, ordered logit, and logistic regression models. Results: From 1000 survey respondents, 666 individuals (364 females, 54.7\%) were included in the study with mean age of 48.9 (SD 17.6) years and mean eHEALS score of 29.3 (SD 4.9). Respondents with higher eHEALS scores were more likely to understand the health care professionals' (HCPs') explanations ($\chi$29=24.2, P=.002) and to be involved in decision making about care and treatment ($\chi$29=18.2, P=.03). In multivariate regression, respondents with lowest (first quartile) and moderately high (third quartile) eHEALS scores differed significantly, where the latter were more likely to have an overall positive experience (P=.02) and experience fewer problems (P=.02). In addition, those respondents had better experiences in terms of how easy it was to understand the HCPs' explanations (P<.001) and being able to ask questions during their last consultation (P=.04). Patient-reported experiences of individuals with highest (fourth quartile) and lowest (first quartile) eHEALS levels did not differ significantly in any items of the PREM instrument, and neither did composite PREM scores generated from the PREM items (P>.05 in all models). Conclusions: We demonstrated the association between eHealth literacy and PREMs. The potential patient-, physician-, and system-related factors explaining the negative experiences among people with highest levels of eHealth literacy warrant further investigation, which may contribute to the development of efficient eHealth literacy interventions. Further research is needed to establish causal relationship between eHealth literacy and patient-reported experiences. ", doi="10.2196/19013", url="https://www.jmir.org/2020/8/e19013", url="http://www.ncbi.nlm.nih.gov/pubmed/32667891" } @Article{info:doi/10.2196/17058, author="Crafoord, Marie-Ther{\'e}se and Fjell, Maria and Sundberg, Kay and Nilsson, Marie and Langius-Ekl{\"o}f, Ann", title="Engagement in an Interactive App for Symptom Self-Management during Treatment in Patients With Breast or Prostate Cancer: Mixed Methods Study", journal="J Med Internet Res", year="2020", month="Aug", day="10", volume="22", number="8", pages="e17058", keywords="engagement", keywords="adherence", keywords="mHealth", keywords="mobile app", keywords="cancer supportive care", keywords="symptom management", keywords="usage metrics", keywords="breast cancer", keywords="prostate cancer", abstract="Background: Using mobile technology for symptom management and self-care can improve patient-clinician communication and clinical outcomes in patients with cancer. The interactive app Interaktor has been shown to reduce symptom burden during cancer treatment. It includes symptom assessment, an alert system for contact with health care professionals, access to self-care advice, and visualization of symptom history. It is essential to understand how digital interventions operate; one approach is to examine engagement by assessing usage and exploring user experiences. Actual usage in relation to the intended use---adherence---is an essential factor of engagement. Objective: This study aimed to describe engagement with the Interaktor app among patients with breast or prostate cancer during treatment. Methods: Patients from the intervention groups of two separate randomized controlled trials were included: patients with breast cancer receiving neoadjuvant chemotherapy (n=74) and patients with locally advanced prostate cancer receiving treatment with radiotherapy (n=75). The patients reported their symptoms daily. Sociodemographic and clinical data were obtained from baseline questionnaires and medical records. Logged data usage was retrieved from the server and analyzed descriptively and with multiple regression analysis. Telephone interviews were conducted with patients about their perceptions of using the app and analyzed using content analysis. Results: The median adherence percentage to daily symptom reporting was 83\%. Most patients used the self-care advice and free text message component. Among the patients treated for breast cancer, higher age predicted a lower total number of free text messages sent (P=.04). Among the patients treated for prostate cancer, higher age (P=.01) and higher education level (P=.04), predicted an increase in total views on self-care advice, while higher comorbidity (P=.004) predicted a decrease in total views on self-care advice. Being married or living with a partner predicted a higher adherence to daily symptom reporting (P=.02). Daily symptom reporting created feelings of having continuous contact with health care professionals, being acknowledged, and safe. Being contacted by a nurse after a symptom alert was considered convenient and highly valued. Treatment and time-related aspects influenced engagement. Daily symptom reporting was perceived as particularly meaningful at the beginning of treatment. Requests were made for advice on diet and psychological symptoms, as well as for more comprehensive and detailed information as the patient progressed through treatment. Conclusions: Patient engagement in the interactive app Interaktor was high. The app promoted patient participation in their care through continuous and convenient contact with health care professionals. The predictive ability of demographic variables differed between patient groups, but higher age and a higher educational level predicted usage of specific app functions for both patient groups. Patients' experience of relevance and interactivity influenced their engagement positively. ", doi="10.2196/17058", url="https://www.jmir.org/2020/8/e17058", url="http://www.ncbi.nlm.nih.gov/pubmed/32663140" } @Article{info:doi/10.2196/15899, author="B{\"u}chter, B. Roland and Betsch, Cornelia and Ehrlich, Martina and Fechtelpeter, Dennis and Grouven, Ulrich and Keller, Sabine and Meuer, Regina and Rossmann, Constanze and Waltering, Andreas", title="Communicating Uncertainty in Written Consumer Health Information to the Public: Parallel-Group, Web-Based Randomized Controlled Trial", journal="J Med Internet Res", year="2020", month="Aug", day="10", volume="22", number="8", pages="e15899", keywords="uncertainty", keywords="consumer health information", keywords="decision making", abstract="Background: Uncertainty is integral to evidence-informed decision making and is of particular importance for preference-sensitive decisions. Communicating uncertainty to patients and the public has long been identified as a goal in the informed and shared decision-making movement. Despite this, there is little quantitative research on how uncertainty in health information is perceived by readers. Objective: The aim of this study was to examine the impact of different uncertainty descriptions regarding the evidence for a treatment effect in a written research summary for the public. Methods: We developed 8 versions of a research summary on a fictitious drug for tinnitus with varying degrees (Q1), sources (Q2), and magnitudes of uncertainty (Q3). We recruited 2099 members of the German public from a web-based research panel. Of these, 1727 fulfilled the inclusion criteria and were randomly presented with one of these research summaries. Randomization was conducted by using a centralized computer with a random number generator. Web-based recruitment and data collection were fully automated. Participants were not aware of the purpose of the study and alternative presentations. We measured the following outcomes: perception of the treatment effectiveness (primary), certainty in the judgement of treatment effectiveness, perception of the body of evidence, text quality, and intended decision. The outcomes were self-assessed. Results: For the primary outcome, we did not find a global effect for Q1 and Q2 (P=.25 and P=.73), but we found a global effect for Q3 (P=.048). Pairwise comparisons showed a weaker perception of treatment effectiveness for the research summary with 3 sources of uncertainty compared to the version with 2 sources of uncertainty (P=.04). Specifically, the proportion of the participants in the group with 3 sources of uncertainty that perceived the drug as possibly beneficial was 9\% lower than that of the participants in the group with 2 sources of uncertainty (92/195, 47.2\% vs 111/197, 56.3\%, respectively). The proportion of the participants in the group with 3 sources of uncertainty that considered the drug to be of unclear benefit was 8\% higher than that of the participants in the group with 2 sources of uncertainty (72/195, 36.9\% vs 57/197, 28.9\%, respectively). However, there was no significant difference compared to the version with 1 source of uncertainty (P=.31). We did not find any meaningful differences between the research summaries for the secondary outcomes. Conclusions: Communicating even a large magnitude of uncertainty for a treatment effect had little impact on the perceived effectiveness. Efforts to improve public understanding of research are needed to improve the understanding of evidence-based health information. Trial Registration: German Clinical Trials Register DRKS00015911, https://www.drks.de/drks\_web/navigate.do?navigationId=trial.HTML\&TRIAL\_ID=DRKS00015911 International Registered Report Identifier (IRRID): RR2-10.2196/13425 ", doi="10.2196/15899", url="http://www.jmir.org/2020/8/e15899/", url="http://www.ncbi.nlm.nih.gov/pubmed/32773375" } @Article{info:doi/10.2196/16441, author="Hamakawa, Nao and Nakano, Rumiko and Kogetsu, Atsushi and Coathup, Victoria and Kaye, Jane and Yamamoto, Anne Beverley and Kato, Kazuto", title="Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review", journal="J Med Internet Res", year="2020", month="Aug", day="4", volume="22", number="8", pages="e16441", keywords="participant-centric initiatives", keywords="patient involvement", keywords="patient engagement", keywords="participatory research", keywords="participatory medicine", keywords="information and communication technology", keywords="patient participation", abstract="Background: Information and communication technology (ICT) has made remarkable progress in recent years and is being increasingly applied to medical research. This technology has the potential to facilitate the active involvement of research participants. Digital platforms that enable participants to be involved in the research process are called participant-centric initiatives (PCIs). Several PCIs have been reported in the literature, but no scoping reviews have been carried out. Moreover, detailed methods and features to aid in developing a clear definition of PCIs have not been sufficiently elucidated to date. Objective: The objective of this scoping review is to describe the recent trends in, and features of, PCIs across the United States, the United Kingdom, and Japan. Methods: We applied a methodology suggested by Levac et al to conduct this scoping review. We searched electronic databases---MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase (Excerpta Medica Database), CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Ichushi-Web---and sources of grey literature, as well as internet search engines---Google and Bing. We hand-searched through key journals and reference lists of the relevant articles. Medical research using ICT was eligible for inclusion if there was a description of the active involvement of the participants. Results: Ultimately, 21 PCIs were identified that have implemented practical methods and modes of various communication activities, such as patient forums and use of social media, in the field of medical research. Various methods of decision making that enable participants to become involved in setting the agenda were also evident. Conclusions: This scoping review is the first study to analyze the detailed features of PCIs and how they are being implemented. By clarifying the modes and methods of various forms of communication and decision making with patients, this review contributes to a better understanding of patient-centric involvement, which can be facilitated by PCIs. International Registered Report Identifier (IRRID): RR2-10.2196/resprot.7407 ", doi="10.2196/16441", url="https://www.jmir.org/2020/8/e16441", url="http://www.ncbi.nlm.nih.gov/pubmed/32749228" } @Article{info:doi/10.2196/19108, author="Thompson, P. Alison and MacDonald, E. Shannon and Wine, Eytan and Scott, D. Shannon", title="An Evaluation of Parents' Experiences of Patient Engagement in Research to Develop a Digital Knowledge Translation Tool: Protocol for a Multi-Method Study", journal="JMIR Res Protoc", year="2020", month="Aug", day="4", volume="9", number="8", pages="e19108", keywords="patient engagement in research", keywords="knowledge translation", keywords="functional constipation", keywords="digital health resources", keywords="patient-oriented research", keywords="formative evaluation", abstract="Background: The last decade has seen increasing calls for patient and public involvement in health-related research due to an ideological shift toward more equitable methods of knowledge development and an effort to increase the usability and relevance of knowledge by improving outcomes in clinical practice. Patient engagement includes simply informing patients to offering complete decision-making autonomy to individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite the use of patient engagement methods in research, evaluation has lagged, resulting in a knowledge gap that makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved. This study centers on pediatric functional constipation, a common condition that affects children and families. Since parents play a pivotal role in treatment, they are an optimal group to engage in improving the resources and support available to them. Objective: This study aims to use patient-engagement methods to establish a research collaboration with parents to cocreate a digital knowledge translation tool for parents caring for a child with functional constipation and formally evaluate the patient engagement processes within this project to build the science of patient engagement in research. Methods: Members of the parent collaborator group will be recruited from previous participants who expressed interest in the development of a digital knowledge translation tool. The group will collaborate with the research team to create a tool to address patients' support and information needs when caring for a child with functional constipation. The parent collaborator group will then be evaluated in a multimethod study design. Data will be digitally and anonymously collected from all members of the parent collaborator group, using the validated Public and Patient Engagement Evaluation Tool (PPEET) patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used to assess themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings will be integrated into the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting of each element as described by the Good Reporting of a Mixed Methods Study criteria. Results: Recruitment is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital knowledge translation tool. The results of this study are expected to be published by the end of 2020. Conclusions: This study will provide valuable information about parents' experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research. International Registered Report Identifier (IRRID): PRR1-10.2196/19108 ", doi="10.2196/19108", url="https://www.researchprotocols.org/2020/8/e19108", url="http://www.ncbi.nlm.nih.gov/pubmed/32663147" } @Article{info:doi/10.2196/19778, author="Vaidyam, Aditya and Roux, Spencer and Torous, John", title="Patient Innovation in Investigating the Effects of Environmental Pollution in Schizophrenia: Case Report of Digital Phenotyping Beyond Apps", journal="JMIR Ment Health", year="2020", month="Aug", day="3", volume="7", number="8", pages="e19778", keywords="digital mental health", keywords="mHealth", keywords="apps", keywords="serious mental illness", keywords="schizophrenia", keywords="psychiatry", keywords="digital phenotyping", doi="10.2196/19778", url="https://mental.jmir.org/2020/8/e19778", url="http://www.ncbi.nlm.nih.gov/pubmed/32559173" } @Article{info:doi/10.2196/18374, author="McLennan, Stuart", title="Rejected Online Feedback From a Swiss Physician Rating Website Between 2008 and 2017: Analysis of 2352 Ratings", journal="J Med Internet Res", year="2020", month="Aug", day="3", volume="22", number="8", pages="e18374", keywords="physician rating websites", keywords="patient satisfaction", keywords="participatory medicine", keywords="patient feedback", abstract="Background: Previous research internationally has only analyzed publicly available feedback on physician rating websites (PRWs). However, it appears that many PRWs are not publishing all the feedback they receive. Analysis of this rejected feedback could provide a better understanding of the types of feedback that are currently not published and whether this is appropriate. Objective: The aim of this study was to examine (1) the number of patient feedback rejected from the Swiss PRW Medicosearch, (2) the evaluation tendencies of the rejected patient feedback, and (3) the types of issues raised in the rejected narrative comments. Methods: The Swiss PRW Medicosearch provided all the feedback that had been rejected between September 16, 2008, and September 22, 2017. The feedback were analyzed and classified according to a theoretical categorization framework of physician-, staff-, and practice-related issues. Results: Between September 16, 2008, and September 22, 2017, Medicosearch rejected a total of 2352 patient feedback. The majority of feedback rejected (1754/2352, 74.6\%) had narrative comments in the German language. However, 11.9\% (279/2352) of the rejected feedback only provided a quantitative rating with no narrative comment. Overall, 25\% (588/2352) of the rejected feedback were positive, 18.7\% (440/2352) were neutral, and 56\% (1316/2352) were negative. The average rating of the rejected feedback was 2.8 (SD 1.4). In total, 44 subcategories addressing the physician (n=20), staff (n=9), and practice (n=15) were identified. In total, 3804 distinct issues were identified within the 44 subcategories of the categorization framework; 75\% (2854/3804) of the issues were related to the physician, 6.4\% (242/3804) were related to the staff, and 18.6\% (708/3804) were related to the practice. Frequently mentioned issues identified from the rejected feedback included (1) satisfaction with treatment (533/1903, 28\%); (2) the overall assessment of the physician (392/1903, 20.6\%); (3) recommending the physician (345/1903, 18.1\%); (4) the physician's communication (261/1903, 13.7\%); (5) the physician's caring attitude (220/1903, 11.6\%); and (6) the physician's friendliness (203/1903, 10.6\%). Conclusions: It is unclear why the majority of the feedback were rejected. This is problematic and raises concerns that online patient feedback are being inappropriately manipulated. If online patient feedback is going to be collected, there needs to be clear policies and practices about how this is handled. It cannot be left to the whims of PRWs, who may have financial incentives to suppress negative feedback, to decide which feedback is or is not published online. Further research is needed to examine how many PRWs are using criteria for determining which feedback is published or not, what those criteria are, and what measures PRWs are using to address the manipulation of online patient feedback. ", doi="10.2196/18374", url="https://www.jmir.org/2020/8/e18374", url="http://www.ncbi.nlm.nih.gov/pubmed/32687479" } @Article{info:doi/10.2196/17087, author="Hswen, Yulin and Zhang, Amanda and Sewalk, C. Kara and Tuli, Gaurav and Brownstein, S. John and Hawkins, B. Jared", title="Investigation of Geographic and Macrolevel Variations in LGBTQ Patient Experiences: Longitudinal Social Media Analysis", journal="J Med Internet Res", year="2020", month="Jul", day="31", volume="22", number="7", pages="e17087", keywords="LGBTQ", keywords="sexual and gender minorities", keywords="health care quality", keywords="health care disparities", keywords="social media", keywords="digital health", keywords="sentiment analysis", keywords="infodemiology", abstract="Background: Discrimination in the health care system contributes to worse health outcomes among lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients. Objective: The aim of this study is to examine disparities in patient experience among LGBTQ persons using social media data. Methods: We collected patient experience data from Twitter from February 2013 to February 2017 in the United States. We compared the sentiment of patient experience tweets between Twitter users who self-identified as LGBTQ and non-LGBTQ. The effect of state-level partisan identity on patient experience sentiment and differences between LGBTQ users and non-LGBTQ users were analyzed. Results: We observed lower (more negative) patient experience sentiment among 13,689 LGBTQ users compared to 1,362,395 non-LGBTQ users. Increasing state-level liberal political identification was associated with higher patient experience sentiment among all users but had stronger effects for LGBTQ users. Conclusions: Our findings highlight that social media data can yield insights about patient experience for LGBTQ persons and suggest that a state-level sociopolitical environment influences patient experience for this group. Efforts are needed to reduce disparities in patient care for LGBTQ persons while taking into context the effect of the political climate on these inequities. ", doi="10.2196/17087", url="http://www.jmir.org/2020/7/e17087/", url="http://www.ncbi.nlm.nih.gov/pubmed/33137713" } @Article{info:doi/10.2196/15378, author="Martin, Philippe and Cousin, Lorraine and Gottot, Serge and Bourmaud, Aurelie and de La Rochebrochard, Elise and Alberti, Corinne", title="Participatory Interventions for Sexual Health Promotion for Adolescents and Young Adults on the Internet: Systematic Review", journal="J Med Internet Res", year="2020", month="Jul", day="31", volume="22", number="7", pages="e15378", keywords="sexual health", keywords="health promotion", keywords="internet", keywords="participatory interventions", keywords="adolescents and young adults", keywords="methods", abstract="Background: The World Health Organization recommends the development of participatory sexuality education. In health promotion, web-based participatory interventions have great potential in view of the internet's popularity among young people. Objective: The aim of this review is to describe existing published studies on online participatory intervention methods used to promote the sexual health of adolescents and young adults. Methods: We conducted a systematic review based on international scientific and grey literature. We used the PubMed search engine and Aurore database for the search. Articles were included if they reported studies on participatory intervention, included the theme of sexual health, were conducted on the internet (website, social media, online gaming system), targeted populations aged between 10 and 24 years, and had design, implementation, and evaluation methods available. We analyzed the intervention content, study implementation, and evaluation methods for all selected articles. Results: A total of 60 articles were included, which described 37 interventions; several articles were published about the same intervention. Process results were published in many articles (n=40), in contrast to effectiveness results (n=23). Many of the 37 interventions were developed on websites (n=20). The second most used medium is online social networks (n=13), with Facebook dominating this group (n=8). Online peer interaction is the most common participatory component promoted by interventions (n=23), followed by interaction with a professional (n=16). Another participatory component is game-type activity (n=10). Videos were broadcast for more than half of the interventions (n=20). In total, 43\% (n=16) of the interventions were based on a theoretical model, with many using the Information-Motivation-Behavioral Skills model (n=7). Less than half of the interventions have been evaluated for effectiveness (n=17), while one-third (n=12) reported plans to do so and one-fifth (n=8) did not indicate any plan for effectiveness evaluation. The randomized controlled trial is the most widely used study design (n=16). Among the outcomes (evaluated or planned for evaluation), sexual behaviors are the most evaluated (n=14), followed by condom use (n=11), and sexual health knowledge (n=8). Conclusions: Participatory online interventions for young people's sexual health have shown their feasibility, practical interest, and attractiveness, but their effectiveness has not yet been sufficiently evaluated. Online peer interaction, the major participatory component, is not sufficiently conceptualized and defined as a determinant of change or theoretical model component. One potential development would be to build a conceptual model integrating online peer interaction and support as a component. ", doi="10.2196/15378", url="http://www.jmir.org/2020/7/e15378/", url="http://www.ncbi.nlm.nih.gov/pubmed/32735217" } @Article{info:doi/10.2196/14455, author="Dunivin, Zackary and Zadunayski, Lindsay and Baskota, Ujjwal and Siek, Katie and Mankoff, Jennifer", title="Gender, Soft Skills, and Patient Experience in Online Physician Reviews: A Large-Scale Text Analysis", journal="J Med Internet Res", year="2020", month="Jul", day="30", volume="22", number="7", pages="e14455", keywords="reviews", keywords="physician-patient relationship", keywords="gender", keywords="soft-skills", abstract="Background: Online physician reviews are an important source of information for prospective patients. In addition, they represent an untapped resource for studying the effects of gender on the doctor-patient relationship. Understanding gender differences in online reviews is important because it may impact the value of those reviews to patients. Documenting gender differences in patient experience may also help to improve the doctor-patient relationship. This is the first large-scale study of physician reviews to extensively investigate gender bias in online reviews or offer recommendations for improvements to online review systems to correct for gender bias and aid patients in selecting a physician. Objective: This study examines 154,305 reviews from across the United States for all medical specialties. Our analysis includes a qualitative and quantitative examination of review content and physician rating with regard to doctor and reviewer gender. Methods: A total of 154,305 reviews were sampled from Google Place reviews. Reviewer and doctor gender were inferred from names. Reviews were coded for overall patient experience (negative or positive) by collapsing a 5-star scale and coded for general categories (process, positive/negative soft skills), which were further subdivided into themes. Computational text processing methods were employed to apply this codebook to the entire data set, rendering it tractable to quantitative methods. Specifically, we estimated binary regression models to examine relationships between physician rating, patient experience themes, physician gender, and reviewer gender). Results: Female reviewers wrote 60\% more reviews than men. Male reviewers were more likely to give negative reviews (odds ratio [OR] 1.15, 95\% CI 1.10-1.19; P<.001). Reviews of female physicians were considerably more negative than those of male physicians (OR 1.99, 95\% CI 1.94-2.14; P<.001). Soft skills were more likely to be mentioned in the reviews written by female reviewers and about female physicians. Negative reviews of female doctors were more likely to mention candor (OR 1.61, 95\% CI 1.42-1.82; P<.001) and amicability (OR 1.63, 95\% CI 1.47-1.90; P<.001). Disrespect was associated with both female physicians (OR 1.42, 95\% CI 1.35-1.51; P<.001) and female reviewers (OR 1.27, 95\% CI 1.19-1.35; P<.001). Female patients were less likely to report disrespect from female doctors than expected from the base ORs (OR 1.19, 95\% CI 1.04-1.32; P=.008), but this effect overrode only the effect for female reviewers. Conclusions: This work reinforces findings in the extensive literature on gender differences and gender bias in patient-physician interaction. Its novel contribution lies in highlighting gender differences in online reviews. These reviews inform patients' choice of doctor and thus affect both patients and physicians. The evidence of gender bias documented here suggests review sites may be improved by providing information about gender differences, controlling for gender when presenting composite ratings for physicians, and helping users write less biased reviews. ", doi="10.2196/14455", url="https://www.jmir.org/2020/7/e14455", url="http://www.ncbi.nlm.nih.gov/pubmed/32729844" } @Article{info:doi/10.2196/17673, author="Gilljam, Britt-Mari and Nygren, M. Jens and Svedberg, Petra and Arvidsson, Susann", title="Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study", journal="J Med Internet Res", year="2020", month="Jul", day="28", volume="22", number="7", pages="e17673", keywords="cancer", keywords="child care", keywords="communication", keywords="eHealth", keywords="patient participation", abstract="Background: For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. Objective: The aim of this study was to investigate children's participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. Methods: A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children's levels of participation guided by a framework based on Shier's model of participation. Results: Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier's participation model: children were listened to, children were supported to express their views, and children's views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. Conclusions: This study shows that the eHealth service Sisom can increase children's participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children's health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care. ", doi="10.2196/17673", url="http://www.jmir.org/2020/7/e17673/", url="http://www.ncbi.nlm.nih.gov/pubmed/32720907" } @Article{info:doi/10.2196/18973, author="Avdagovska, Melita and Ballermann, Mark and Olson, Karin and Graham, Timothy and Menon, Devidas and Stafinski, Tania", title="Patient Portal Implementation and Uptake: Qualitative Comparative Case Study", journal="J Med Internet Res", year="2020", month="Jul", day="27", volume="22", number="7", pages="e18973", keywords="patient portals", keywords="information technology", keywords="adoption", abstract="Background: Giving patients access to their health information is a provincial and national goal, and it is critical to the delivery of patient-centered care. With this shift, patient portals have become more prevalent. In Alberta, the Alberta Health Services piloted a portal (MyChart). There was a need to identify factors that promoted the use of this portal. Furthermore, it was imperative to understand why there was variability in uptake within the various clinics that participated in the pilot. Objective: This study aims to identify potential factors that could improve the uptake of MyChart from the perspectives of both users and nonusers at pilot sites. We focused on factors that promoted the use of MyChart along with related benefits and barriers to its use, with the intention that this information could be incorporated into the plan for its province-wide implementation. Methods: A qualitative comparative case study was conducted to determine the feasibility, acceptability, and initial perceptions of users and to identify ways to increase uptake. Semistructured interviews were conducted with 56 participants (27 patients, 21 providers, 4 nonmedical staff, and 4 clinic managers) from 5 clinics. Patients were asked about the impact of MyChart on their health and health care. Providers were asked about the impact on the patient-provider relationship and workflow. Managers were asked about barriers to implementation. The interviews were recorded, transcribed verbatim, and entered into NVivo. A thematic analysis was used to analyze the data. Results: Results from a comparison of factors related to uptake of MyChart in 5 clinics (2 clinics with high uptake, 1 with moderate uptake, 1 with low uptake, and 1 with no uptake) are reported. Some theoretical constructs in our study, such as intention to use, perceived value, similarity (novelty) of the technology, and patient health needs, were similar to findings published by other research teams. We also identified some new factors associated with uptake, including satisfaction or dissatisfaction with the current status quo, performance expectancy, facilitating conditions, behavioral intentions, and use behavior. All these factors had an impact on the level of uptake in each setting and created different opportunities for end users. Conclusions: There is limited research on factors that influence the uptake of patient portals. We identified some factors that were consistent with those reported by others but also several new factors that were associated with the update of MyChart, a new patient portal, in the clinics we studied. On the basis of our results, we posit that a shared understanding of the technology among patients, clinicians, and managers, along with dissatisfaction with nonportal-based communications, is foundational and must be addressed for patient portals to support improvements in care. ", doi="10.2196/18973", url="http://www.jmir.org/2020/7/e18973/", url="http://www.ncbi.nlm.nih.gov/pubmed/32716308" } @Article{info:doi/10.2196/17441, author="Waterman, D. Amy and Wood, H. Emily and Ranasinghe, N. Omesh and Faye Lipsey, Amanda and Anderson, Crystal and Balliet, Wendy and Holland-Carter, Lauren and Maurer, Stacey and Aurora Posadas Salas, Maria", title="A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study", journal="JMIR Form Res", year="2020", month="Jul", day="21", volume="4", number="7", pages="e17441", keywords="living donor kidney transplant", keywords="living donation", keywords="health education", keywords="informed decision-making", keywords="awareness", keywords="health literacy", keywords="video library", keywords="health technology", keywords="kidney diseases", keywords="diffusion of innovation", keywords="digital library", keywords="mobile phone", abstract="Background: It is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. Objective: This paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged. Methods: This study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited. Results: This study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6\%) were white and 99/137 (72.2\%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8\% (130/137) of storytellers were motivated by a desire to educate the public; 78.1\% (107/137) were motivated to help more people become living donors; and 75.9\% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9\% (85/135) of stories and was edited out. Conclusions: With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors. ", doi="10.2196/17441", url="https://formative.jmir.org/2020/7/e17441", url="http://www.ncbi.nlm.nih.gov/pubmed/32480362" } @Article{info:doi/10.2196/15798, author="Struikman, Bas and Bol, Nadine and Goedhart, Annelijn and van Weert, M. Julia C. and Talboom-Kamp, Esther and van Delft, Sanne and Brabers, M. Anne E. and van Dijk, Liset", title="Features of a Patient Portal for Blood Test Results and Patient Health Engagement: Web-Based Pre-Post Experiment", journal="J Med Internet Res", year="2020", month="Jul", day="20", volume="22", number="7", pages="e15798", keywords="online patient portals", keywords="patient health engagement", keywords="blood testing", keywords="blood test results", keywords="consumer panel, visualization", keywords="patient information", abstract="Background: The use of patient portals for presenting health-related patient data, such as blood test results, is becoming increasingly important in health practices. Patient portals have the potential to enhance patient health engagement, but content might be misinterpreted. Objective: This study aimed to discover whether the way of presenting blood test outcomes in an electronic patient portal is associated with patient health engagement and whether this varies across different blood test outcomes. Methods: A 2x3 between-subjects experiment was conducted among members of the Nivel Dutch Health Care Consumer Panel. All participants read a scenario in which they were asked to imagine themselves receiving blood test results. These results differed in terms of the presented blood values (ie, normal vs partially abnormal vs all abnormal) as well as in terms of whether the results were accompanied with explanatory text and visualization. Patient health engagement was measured both before (T0) and after (T1) participants were exposed to their fictive blood test results. Results: A total 487 of 900 invited members responded (response rate 54\%), of whom 50.3\% (245/487) were female. The average age of the participants was 52.82 years (SD 15.41 years). Patient health engagement saw either a significant decrease or a nonsignificant difference in the experimental groups after viewing the blood test results. The mean difference was smaller in the groups that received blood test results with additional text and visualization (meanT0 5.33, SE 0.08; meanT1 5.14, SE 0.09; mean difference 0.19, SE 0.08, P=.02) compared with groups that received blood test results without explanatory text and visualization (meanT0 5.19, SE 0.08; meanT1 4.55, SE 0.09; mean difference 0.64, SE 0.08, P<.001). Adding text and visualization, in particular, reduced the decline in patient health engagement in participants who received normal results or mixed results (ie, combination of normal and abnormal results). Conclusions: Adding text and visualization features can attenuate the decrease in patient health engagement in participants who receive outcomes of a blood test via a patient portal, particularly when blood test results are (partly) normal. This suggests that explanatory text and visualization can be reassuring. Future research is warranted to determine whether these results can be generalized to a patient population who receive their actual blood test results. ", doi="10.2196/15798", url="https://www.jmir.org/2020/7/e15798", url="http://www.ncbi.nlm.nih.gov/pubmed/32706704" } @Article{info:doi/10.2196/17744, author="Stewart, T. Maureen and Hogan, P. Timothy and Nicklas, Jeff and Robinson, A. Stephanie and Purington, M. Carolyn and Miller, J. Christopher and Vimalananda, G. Varsha and Connolly, L. Samantha and Wolfe, L. Hill and Nazi, M. Kim and Netherton, Dane and Shimada, L. Stephanie", title="The Promise of Patient Portals for Individuals Living With Chronic Illness: Qualitative Study Identifying Pathways of Patient Engagement", journal="J Med Internet Res", year="2020", month="Jul", day="17", volume="22", number="7", pages="e17744", keywords="patient engagement", keywords="patient portal", keywords="chronic disease", keywords="diabetes", keywords="secure messaging", keywords="veterans", abstract="Background: Patients play a critical role in managing their health, especially in the context of chronic conditions like diabetes. Electronic patient portals have been identified as a potential means to improve patient engagement; that is, patients' involvement in their care. However, little is known about the pathways through which portals may help patients engage in their care. Objective: Our objective is to understand how an electronic patient portal facilitates patient engagement among individuals with diabetes. Methods: This qualitative study employed semistructured telephone interviews of 40 patients living with diabetes since at least 2011, who had experienced uncontrolled diabetes, and had used secure messaging through a portal at least 4 times over 18 months. The interviews were recorded, transcribed, coded, and analyzed using primarily an inductive approach to identify how patients living with diabetes use an online health portal to support diabetes self-management. Results: Overall, patients who used the portal reported feeling engaged in their health care. We identified four pathways by which the portal facilitates patient engagement and some challenges. The portal provides a platform that patients use to (1) better understand their health by asking questions about new symptoms, notes, or labs, (2) prepare for medical appointments by reviewing labs and notes, (3) coordinate care between VA (Veterans Affairs) and non-VA health care teams, and (4) reach out to providers to request help between visits. Several patients reported that the portal helped improve the patient-provider relationship; however, aspects of the portal design may hinder engagement for others. Patients reported challenges with both secure messaging and access to medical records that had negative impacts on their engagement. Benefits for patient engagement were described by many types of portal users with varying degrees of diabetes control. Conclusions: Patient portals support engagement by facilitating patient access to their health information and by facilitating patient-provider communication. Portals can help a wide range of users engage with their care. ", doi="10.2196/17744", url="https://www.jmir.org/2020/7/e17744", url="http://www.ncbi.nlm.nih.gov/pubmed/32706679" } @Article{info:doi/10.2196/17875, author="Hempstead, E. Sarah and Fredkin, Kelsey and Hovater, Cade and Naureckas, T. Edward", title="Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience", journal="J Participat Med", year="2020", month="Jul", day="13", volume="12", number="3", pages="e17875", keywords="cystic fibrosis", keywords="guidelines", keywords="patient participation", keywords="patient engagement", doi="10.2196/17875", url="https://jopm.jmir.org/2020/3/e17875" } @Article{info:doi/10.2196/17338, author="Green, M. Brian and Van Horn, Tente Katelyn and Gupte, Ketki and Evans, Megan and Hayes, Sara and Bhowmick, Amrita", title="Assessment of Adaptive Engagement and Support Model for People With Chronic Health Conditions in Online Health Communities: Combined Content Analysis", journal="J Med Internet Res", year="2020", month="Jul", day="7", volume="22", number="7", pages="e17338", keywords="social media", keywords="social support", keywords="health education", keywords="qualitative research", keywords="patient empowerment", abstract="Background: With the pervasiveness of social media, online health communities (OHCs) are an important tool for facilitating information sharing and support among people with chronic health conditions. Importantly, OHCs offer insight into conversations about the lived experiences of people with particular health conditions. Little is known about the aspects of OHCs that are important to maintain safe and productive conversations that support health. Objective: This study aimed to assess the provision of social support and the role of active moderation in OHCs developed in accordance with and managed by an adaptive engagement model. This study also aimed to identify key elements of the model that are central to the development, maintenance, and adaptation of OHCs for people with chronic health conditions. Methods: This study used combined content analysis, a mixed methods approach, to analyze sampled Facebook post comments from 6 OHCs to understand how key aspects of the adaptive engagement model facilitate different types of social support. OHCs included in this study are for people living with multiple sclerosis, migraine, irritable bowel syndrome, rheumatoid arthritis, lung cancer, and prostate cancer. An exploratory approach was used in the analysis, and initial codes were grouped into thematic categories and then confirmed through thematic network analysis using the Dedoose qualitative analysis software tool. Thematic categories were compared for similarities and differences for each of the 6 OHCs and by topic discussed. Results: Data on the reach and engagement of the Facebook posts and the analysis of the sample of 5881 comments demonstrate that people with chronic health conditions want to engage on the web and find value in supporting and sharing their experiences with others. Most comments made in these Facebook posts were expressions of social support for others living with the same health condition (3405/5881, 57.89\%). Among the comments with an element of support, those where community members validated the knowledge or experiences of others were most frequent (1587/3405, 46.61\%), followed by the expression of empathy and understanding (1089/3405, 31.98\%). Even among posts with more factual content, such as insurance coverage issues, user comments still had frequent expressions of support for others (80/213, 37.5\%). Conclusions: The analysis of this OHC adaptive engagement model in action shows that the foundational elements---social support, engagement, and moderation---can effectively be used to provide a rich and dynamic community experience for individuals with chronic health conditions. Social support is demonstrated in a variety of ways, including sharing information or validating information shared by others, expressions of empathy, and sharing encouraging statements with others. ", doi="10.2196/17338", url="https://www.jmir.org/2020/7/e17338", url="http://www.ncbi.nlm.nih.gov/pubmed/32492651" } @Article{info:doi/10.2196/15605, author="Schleimer, Erica and Pearce, Jennifer and Barnecut, Andrew and Rowles, William and Lizee, Antoine and Klein, Arno and Block, J. Valerie and Santaniello, Adam and Renschen, Adam and Gomez, Refujia and Keshavan, Anisha and Gelfand, M. Jeffrey and Henry, G. Roland and Hauser, L. Stephen and Bove, Riley", title="A Precision Medicine Tool for Patients With Multiple Sclerosis (the Open MS BioScreen): Human-Centered Design and Development", journal="J Med Internet Res", year="2020", month="Jul", day="6", volume="22", number="7", pages="e15605", keywords="human-centered design", keywords="mobile phone", keywords="personal health record", keywords="participatory medicine", keywords="visualization in eHealth", keywords="human factors", abstract="Background: Patients with multiple sclerosis (MS) face several challenges in accessing clinical tools to help them monitor, understand, and make meaningful decisions about their disease course. The University of California San Francisco MS BioScreen is a web-based precision medicine tool initially designed to be clinician facing. We aimed to design a second, openly available tool, Open MS BioScreen, that would be accessible, understandable, and actionable by people with MS. Objective: This study aimed to describe the human-centered design and development approach (inspiration, ideation, and implementation) for creating the Open MS BioScreen platform. Methods: We planned an iterative and cyclical development process that included stakeholder engagement and iterative feedback from users. Stakeholders included patients with MS along with their caregivers and family members, MS experts, generalist clinicians, industry representatives, and advocacy experts. Users consisted of anyone who wants to track MS measurements over time and access openly available tools for people with MS. Phase I (inspiration) consisted of empathizing with users and defining the problem. We sought to understand the main challenges faced by patients and clinicians and what they would want to see in a web-based app. In phase II (ideation), our multidisciplinary team discussed approaches to capture, display, and make sense of user data. Then, we prototyped a series of mock-ups to solicit feedback from clinicians and people with MS. In phase III (implementation), we incorporated all concepts to test and iterate a minimally viable product. We then gathered feedback through an agile development process. The design and development were cyclical---many times throughout the process, we went back to the drawing board. Results: This human-centered approach generated an openly available, web-based app through which patients with MS, their clinicians, and their caregivers can access the site and create an account. Users can enter information about their MS (basic level as well as more advanced concepts), visualize their data longitudinally, access a series of algorithms designed to empower them to make decisions about their treatments, and enter data from wearable devices to encourage realistic goal setting about their ambulatory activity. Agile development will allow us to continue to incorporate precision medicine tools, as these are validated in the clinical research arena. Conclusions: After engaging intended users into the iterative human-centered design of the Open MS BioScreen, we will now monitor the adaptation and dissemination of the tool as we expand its functionality and reach. The insights generated from this approach can be applied to the development of a number of self-tracking, self-management, and user engagement tools for patients with chronic conditions. ", doi="10.2196/15605", url="https://www.jmir.org/2020/7/e15605", url="http://www.ncbi.nlm.nih.gov/pubmed/32628124" } @Article{info:doi/10.2196/19333, author="Bruce, R. Courtenay and Harrison, Patricia and Nisar, Tariq and Giammattei, Charlie and Tan, M. Neema and Bliven, Caitlin and Shallcross, Jamie and Khleif, Aroub and Tran, Nhan and Kelkar, Sayali and Tobias, Noreen and Chavez, E. Ana and Rivera, Dana and Leong, Angela and Romano, Angela and Desai, Nicholas S. and Sol, R. Josh and Gutierrez, Kayla and Rappel, Christopher and Haas, Eric and Zheng, Feibi and Park, J. Kwan and Jones, Stephen and Barach, Paul and Schwartz, Roberta", title="Assessing the Impact of Patient-Facing Mobile Health Technology on Patient Outcomes: Retrospective Observational Cohort Study", journal="JMIR Mhealth Uhealth", year="2020", month="Jun", day="26", volume="8", number="6", pages="e19333", keywords="mHealth", keywords="patient-centered care", keywords="patient satisfaction", keywords="length of stay", keywords="patient activation", keywords="patient empowerment", keywords="patient engagement", keywords="patient involvement", keywords="hospital stay", keywords="communication programs", abstract="Background: Despite the growth of and media hype about mobile health (mHealth), there is a paucity of literature supporting the effectiveness of widespread implementation of mHealth technologies. Objective: This study aimed to assess whether an innovative mHealth technology system with several overlapping purposes can impact (1) clinical outcomes (ie, readmission rates, revisit rates, and length of stay) and (2) patient-centered care outcomes (ie, patient engagement, patient experience, and patient satisfaction). Methods: We compared all patients (2059 patients) of participating orthopedic surgeons using mHealth technology with all patients of nonparticipating orthopedic surgeons (2554 patients). The analyses included Wilcoxon rank-sum tests, Kruskal-Wallis tests for continuous variables, and chi-square tests for categorical variables. Logistic regression models were performed on categorical outcomes and a gamma-distributed model for continuous variables. All models were adjusted for patient demographics and comorbidities. Results: The inpatient readmission rates for the nonparticipating group when compared with the participating group were higher and demonstrated higher odds ratios (ORs) for 30-day inpatient readmissions (nonparticipating group 106/2636, 4.02\% and participating group 54/2048, 2.64\%; OR 1.48, 95\% CI 1.03 to 2.13; P=.04), 60-day inpatient readmissions (nonparticipating group 194/2636, 7.36\% and participating group 85/2048, 4.15\%; OR 1.79, 95\% CI 1.32 to 2.39; P<.001), and 90-day inpatient readmissions (nonparticipating group 261/2636, 9.90\% and participating group 115/2048, 5.62\%; OR 1.81, 95\% CI 1.40 to 2.34; P<.001). The length of stay for the nonparticipating cohort was longer at 1.90 days, whereas the length of stay for the participating cohort was 1.50 days (mean 1.87, SD 2 vs mean 1.50, SD 1.37; P<.001). Patients treated by participating surgeons received and read text messages using mHealth 83\% of the time and read emails 84\% of the time. Patients responded to 60\% of the text messages and 53\% of the email surveys. Patients were least responsive to digital monitoring questions when the hospital asked them to do something, and they were most engaged with emails that did not require action, including informational content. A total of 96\% (558/580) of patients indicated high satisfaction with using mHealth technology to support their care. Only 0.40\% (75/2059) patients opted-out of the mHealth technology program after enrollment. Conclusions: A novel, multicomponent, pathway-driven, patient-facing mHealth technology can positively impact patient outcomes and patient-reported experiences. These technologies can empower patients to play a more active and meaningful role in improving their outcomes. There is a deep need, however, for a better understanding of the interactions between patients, technology, and health care providers. Future research is needed to (1) help identify, address, and improve technology usability and effectiveness; (2) understand patient and provider attributes that support adoption, uptake, and sustainability; and (3) understand the factors that contribute to barriers of technology adoption and how best to overcome them. ", doi="10.2196/19333", url="http://mhealth.jmir.org/2020/6/e19333/", url="http://www.ncbi.nlm.nih.gov/pubmed/32589161" } @Article{info:doi/10.2196/18185, author="De Simoni, Anna and Shah, T. Anjali and Fulton, Olivia and Parkinson, Jasmine and Sheikh, Aziz and Panzarasa, Pietro and Pagliari, Claudia and Coulson, S. Neil and Griffiths, J. Chris", title="Superusers' Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study", journal="J Med Internet Res", year="2020", month="Jun", day="23", volume="22", number="6", pages="e18185", keywords="social networks", keywords="eHealth", keywords="social media", keywords="peer-to-peer support", keywords="social support", keywords="online health communities", keywords="online forums", keywords="superusers", keywords="leadership", keywords="misinformation", keywords="asthma", keywords="self-management", abstract="Background: Superusers, defined as the 1\% of users who write a large number of posts, play critical roles in online health communities (OHCs), catalyzing engagement and influencing other users' self-care. Their unique online behavior is key to sustaining activity in OHCs and making them flourish. Our previous work showed the presence of 20 to 30 superusers active on a weekly basis among 3345 users in the nationwide Asthma UK OHC and that the community would disintegrate if superusers were removed. Recruiting these highly skilled individuals for research purposes can be challenging, and little is known about superusers. Objective: This study aimed to explore superusers' motivation to actively engage in OHCs, the difficulties they may face, and their interactions with health care professionals (HCPs). Methods: An asynchronous web-based structured interview study was conducted. Superusers of the Asthma UK OHC and Facebook groups were recruited through Asthma UK staff to pilot and subsequently complete the questionnaire. Open-ended questions were analyzed using content analysis. Results: There were 17 superusers recruited for the study (14 patients with asthma and 3 carers); the majority were female (15/17). The age range of participants was 18 to 75 years. They were active in OHCs for 1 to 6 years and spent between 1 and 20 hours per week reading and 1 and 3 hours per week writing posts. Superusers' participation in OHCs was prompted by curiosity about asthma and its medical treatment and by the availability of spare time when they were off work due to asthma exacerbations or retired. Their engagement increased over time as participants furthered their familiarity with the OHCs and their knowledge of asthma and its self-management. Financial or social recognition of the superuser role was not important; their reward came from helping and interacting with others. According to the replies provided, they showed careful judgment to distinguish what can be dealt with through peer advice and what needs input from HCPs. Difficulties were encountered when dealing with misunderstandings about asthma and its treatment, patients not seeking advice from HCPs when needed, and miracle cures or dangerous ideas. Out of 17 participants, only 3 stated that their HCPs were aware of their engagement with OHCs. All superusers thought that HCPs should direct patients to OHCs, provided they are trusted and moderated. In addition, 9 users felt that HCPs themselves should take part in OHCs. Conclusions: Superusers from a UK-wide online community are highly motivated, altruistic, and mostly female individuals who exhibit judgment about the complexity of coping with asthma and the limits of their advice. Engagement with OHCs satisfies their psychosocial needs. Future research should explore how to address their unmet needs, their interactions with HCPs, and the potential integration of OHCs in traditional healthcare. ", doi="10.2196/18185", url="http://www.jmir.org/2020/6/e18185/", url="http://www.ncbi.nlm.nih.gov/pubmed/32573463" } @Article{info:doi/10.2196/13924, author="Gordon, Deborah and Ford, Anna and Triedman, Natalie and Hart, Kamber and Perlis, Roy", title="Health Care Consumer Shopping Behaviors and Sentiment: Qualitative Study", journal="J Participat Med", year="2020", month="Jun", day="16", volume="12", number="2", pages="e13924", keywords="decision making", keywords="choice behavior", keywords="mental processes", keywords="behavioral economics", keywords="health costs", keywords="health care costs", keywords="treatment costs", keywords="cost sharing", keywords="health expenditures", keywords="out-of-pocket costs", abstract="Background: Although some health care market reforms seek to better engage consumers in purchasing health care services, health consumer behavior remains poorly understood. Objective: This study aimed to characterize the behaviors and sentiment of consumers who attempt to shop for health care services. Methods: We used a semistructured interview guide based on grounded theory and standard qualitative research methods to examine components of a typical shopping process in a sample size of 54 insured adults. All interviews were systematically coded to capture consumer behaviors, barriers to shopping behavior, and sentiments associated with these experiences. Results: Participants most commonly described determining and evaluating options, seeking value, and assessing or evaluating value. In total, 83\% (45/54) of participants described engaging in negotiations regarding health care purchasing. The degree of positive sentiment expressed in the interview was positively correlated with identifying and determining the health plan, provider, or treatment options; making the decision to purchase; and evaluating the decision to purchase. Conversely, negative sentiment was correlated with seeking value and making the decision to buy. Conclusions: Consumer shopping behaviors are prevalent in health care purchasing and can be mapped to established consumer behavior models. ", doi="10.2196/13924", url="http://jopm.jmir.org/2020/2/e13924/" } @Article{info:doi/10.2196/16195, author="Al-Orainan, Nourah and EL-Shabasy, Mohamed Adel and Al-Shanqiti, Alamin Khawlah and Al-Harbi, Awad Rawan and Alnashri, Rajeh Hadeel and Rezqallah, Ahmed Raghad and Mirghani, Abdallah Alanoud", title="Public Awareness of Sepsis Compared to Acute Myocardial Infarction and Stroke in Jeddah, Saudi Arabia: Questionnaire Study", journal="Interact J Med Res", year="2020", month="Jun", day="15", volume="9", number="2", pages="e16195", keywords="sepsis", keywords="public awareness", keywords="survey", abstract="Background: Sepsis is a state of organ dysfunction caused by an impaired host response to infection. It is one of the leading causes of death globally. Sepsis, acute myocardial infarction (AMI), and stroke share the primary management requirement of rapid intervention. This could be achieved through early presentation to the hospital, which demands previous knowledge of the disease to ensure better outcomes. Objective: Our study aimed to assess the level of public awareness of sepsis compared with AMI and stroke. Methods: This was a cross-sectional survey study performed in June and July 2018, with 1354 participants from Jeddah, Saudi Arabia, aged ?18 years. Data entry was performed using Microsoft Excel and statistical analysis including chi-square tests and multilogistic regression was performed using SPSS software. Results: A total of 1354 participants were included. Only 56.72\% (768/1354) had heard of the term ``sepsis'' and 48.44\% (372/768) of these participants were able to correctly identify it. In addition, 88.33\% (1196/1354) had heard the term ``myocardial infarction'' and 64.63\% (773/1196) knew the correct definition of that condition. Stroke was recognized by 81.46\% (1103/1354) of participants and 59.20\% (653/1103) of these participants correctly identified the condition. The difference between those who had heard of these diseases and those who knew the correct definition significantly differed from the values for awareness of sepsis and its definition. Conclusions: We found that public awareness and knowledge of sepsis are poor amongst the population of Jeddah compared with the awareness and knowledge of AMI and stroke. This lack of knowledge may pose a serious obstruction to the prompt management needed to limit fatal outcomes. ", doi="10.2196/16195", url="http://www.i-jmr.org/2020/2/e16195/", url="http://www.ncbi.nlm.nih.gov/pubmed/32538794" } @Article{info:doi/10.2196/15086, author="Simblett, Sara and Matcham, Faith and Curtis, Hannah and Greer, Ben and Polhemus, Ashley and Nov{\'a}k, Jan and Ferrao, Jose and Gamble, Peter and Hotopf, Matthew and Narayan, Vaibhav and Wykes, Til and ", title="Patients' Measurement Priorities for Remote Measurement Technologies to Aid Chronic Health Conditions: Qualitative Analysis", journal="JMIR Mhealth Uhealth", year="2020", month="Jun", day="10", volume="8", number="6", pages="e15086", keywords="qualitative analysis", keywords="patient involvement", keywords="remote measurement technology", keywords="mHealth", abstract="Background: Remote measurement technology (RMT), including the use of mobile phone apps and wearable devices, may provide the opportunity for real-world assessment and intervention that will streamline clinical input for years to come. In order to establish the benefits of this approach, we need to operationalize what is expected in terms of a successful measurement. We focused on three clinical long-term conditions where a novel case has been made for the benefits of RMT: major depressive disorder (MDD), multiple sclerosis (MS), and epilepsy. Objective: The aim of this study was to conduct a consultation exercise on the clinical end point or outcome measurement priorities for RMT studies, drawing on the experiences of people with chronic health conditions. Methods: A total of 24 participants (16/24 women, 67\%), ranging from 28 to 65 years of age, with a diagnosis of one of three chronic health conditions?MDD, MS, or epilepsy?took part in six focus groups. A systematic thematic analysis was used to extract themes and subthemes of clinical end point or measurement priorities. Results: The views of people with MDD, epilepsy, and MS differed. Each group highlighted unique measurements of importance, relevant to their specific needs. Although there was agreement that remote measurement could be useful for tracking symptoms of illness, some symptoms were specific to the individual groups. Measuring signs of wellness was discussed more by people with MDD than by people with MS and epilepsy. However, overlap did emerge when considering contextual factors, such as life events and availability of support (MDD and epilepsy) as well as ways of coping (epilepsy and MS). Conclusions: This is a unique study that puts patients' views at the forefront of the design of a clinical study employing novel digital resources. In all cases, measuring symptom severity is key; people want to know when their health is getting worse. Second, symptom severity needs to be placed into context. A holistic approach that, in some cases, considers signs of wellness as well as illness, should be the aim of studies employing RMT to understand the health of people with chronic conditions. ", doi="10.2196/15086", url="https://mhealth.jmir.org/2020/6/e15086", url="http://www.ncbi.nlm.nih.gov/pubmed/32519975" } @Article{info:doi/10.2196/15171, author="Witchel, J. Harry and Thompson, A. Georgina and Jones, I. Christopher and Westling, I. Carina E. and Romero, Juan and Nicotra, Alessia and Maag, Bruno and Critchley, D. Hugo", title="Spelling Errors and Shouting Capitalization Lead to Additive Penalties to Trustworthiness of Online Health Information: Randomized Experiment With Laypersons", journal="J Med Internet Res", year="2020", month="Jun", day="10", volume="22", number="6", pages="e15171", keywords="communication", keywords="health communication", keywords="persuasive communication", keywords="online social networking", keywords="trust", keywords="trustworthiness", keywords="credibility", keywords="typographical errors", abstract="Background: The written format and literacy competence of screen-based texts can interfere with the perceived trustworthiness of health information in online forums, independent of the semantic content. Unlike in professional content, the format in unmoderated forums can regularly hint at incivility, perceived as deliberate rudeness or casual disregard toward the reader, for example, through spelling errors and unnecessary emphatic capitalization of whole words (online shouting). Objective: This study aimed to quantify the comparative effects of spelling errors and inappropriate capitalization on ratings of trustworthiness independently of lay insight and to determine whether these changes act synergistically or additively on the ratings. Methods: In web-based experiments, 301 UK-recruited participants rated 36 randomized short stimulus excerpts (in the format of information from an unmoderated health forum about multiple sclerosis) for trustworthiness using a semantic differential slider. A total of 9 control excerpts were compared with matching error-containing excerpts. Each matching error-containing excerpt included 5 instances of misspelling, or 5 instances of inappropriate capitalization (shouting), or a combination of 5 misspelling plus 5 inappropriate capitalization errors. Data were analyzed in a linear mixed effects model. Results: The mean trustworthiness ratings of the control excerpts ranged from 32.59 to 62.31 (rating scale 0-100). Compared with the control excerpts, excerpts containing only misspellings were rated as being 8.86 points less trustworthy, those containing inappropriate capitalization were rated as 6.41 points less trustworthy, and those containing the combination of misspelling and capitalization were rated as 14.33 points less trustworthy (P<.001 for all). Misspelling and inappropriate capitalization show an additive effect. Conclusions: Distinct indicators of incivility independently and additively penalize the perceived trustworthiness of online text independently of lay insight, eliciting a medium effect size. ", doi="10.2196/15171", url="https://www.jmir.org/2020/6/e15171", url="http://www.ncbi.nlm.nih.gov/pubmed/32519676" } @Article{info:doi/10.2196/18585, author="Yu, Cheng-Sheng and Lin, Yu-Jiun and Lin, Chang-Hsien and Lin, Shiyng-Yu and Wu, L. Jenny and Chang, Shy-Shin", title="Development of an Online Health Care Assessment for Preventive Medicine: A Machine Learning Approach", journal="J Med Internet Res", year="2020", month="Jun", day="5", volume="22", number="6", pages="e18585", keywords="machine learning", keywords="online healthcare assessment", keywords="medical informatics", keywords="preventive medicine", abstract="Background: In the era of information explosion, the use of the internet to assist with clinical practice and diagnosis has become a cutting-edge area of research. The application of medical informatics allows patients to be aware of their clinical conditions, which may contribute toward the prevention of several chronic diseases and disorders. Objective: In this study, we applied machine learning techniques to construct a medical database system from electronic medical records (EMRs) of subjects who have undergone health examination. This system aims to provide online self-health evaluation to clinicians and patients worldwide, enabling personalized health and preventive health. Methods: We built a medical database system based on the literature, and data preprocessing and cleaning were performed for the database. We utilized both supervised and unsupervised machine learning technology to analyze the EMR data to establish prediction models. The models with EMR databases were then applied to the internet platform. Results: The validation data were used to validate the online diagnosis prediction system. The accuracy of the prediction model for metabolic syndrome reached 91\%, and the area under the receiver operating characteristic (ROC) curve was 0.904 in this system. For chronic kidney disease, the prediction accuracy of the model reached 94.7\%, and the area under the ROC curve (AUC) was 0.982. In addition, the system also provided disease diagnosis visualization via clustering, allowing users to check their outcome compared with those in the medical database, enabling increased awareness for a healthier lifestyle. Conclusions: Our web-based health care machine learning system allowed users to access online diagnosis predictions and provided a health examination report. Users could understand and review their health status accordingly. In the future, we aim to connect hospitals worldwide with our platform, so that health care practitioners can make diagnoses or provide patient education to remote patients. This platform can increase the value of preventive medicine and telemedicine. ", doi="10.2196/18585", url="https://www.jmir.org/2020/6/e18585", url="http://www.ncbi.nlm.nih.gov/pubmed/32501272" } @Article{info:doi/10.2196/16670, author="Bala, Sandeep and Keniston, Angela and Burden, Marisha", title="Patient Perception of Plain-Language Medical Notes Generated Using Artificial Intelligence Software: Pilot Mixed-Methods Study", journal="JMIR Form Res", year="2020", month="Jun", day="5", volume="4", number="6", pages="e16670", keywords="artificial intelligence", keywords="patient education", keywords="natural language processing", keywords="OpenNotes", keywords="Open Notes", keywords="patient-physician relationship", keywords="simplified notes", keywords="plain-language notes", abstract="Background: Clinicians' time with patients has become increasingly limited due to regulatory burden, documentation and billing, administrative responsibilities, and market forces. These factors limit clinicians' time to deliver thorough explanations to patients. OpenNotes began as a research initiative exploring the ability of sharing medical notes with patients to help patients understand their health care. Providing patients access to their medical notes has been shown to have many benefits, including improved patient satisfaction and clinical outcomes. OpenNotes has since evolved into a national movement that helps clinicians share notes with patients. However, a significant barrier to the widespread adoption of OpenNotes has been clinicians' concerns that OpenNotes may cost additional time to correct patient confusion over medical language. Recent advances in artificial intelligence (AI) technology may help resolve this concern by converting medical notes to plain language with minimal time required of clinicians. Objective: This pilot study assesses patient comprehension and perceived benefits, concerns, and insights regarding an AI-simplified note through comprehension questions and guided interview. Methods: Synthea, a synthetic patient generator, was used to generate a standardized medical-language patient note which was then simplified using AI software. A multiple-choice comprehension assessment questionnaire was drafted with physician input. Study participants were recruited from inpatients at the University of Colorado Hospital. Participants were randomly assigned to be tested for their comprehension of the standardized medical-language version or AI-generated plain-language version of the patient note. Following this, participants reviewed the opposite version of the note and participated in a guided interview. A Student t test was performed to assess for differences in comprehension assessment scores between plain-language and medical-language note groups. Multivariate modeling was performed to assess the impact of demographic variables on comprehension. Interview responses were thematically analyzed. Results: Twenty patients agreed to participate. The mean number of comprehension assessment questions answered correctly was found to be higher in the plain-language group compared with the medical-language group; however, the Student t test was found to be underpowered to determine if this was significant. Age, ethnicity, and health literacy were found to have a significant impact on comprehension scores by multivariate modeling. Thematic analysis of guided interviews highlighted patients' perceived benefits, concerns, and suggestions regarding such notes. Major themes of benefits were that simplified plain-language notes may (1) be more useable than unsimplified medical-language notes, (2) improve the patient-clinician relationship, and (3) empower patients through an enhanced understanding of their health care. Conclusions: AI software may translate medical notes into plain-language notes that are perceived as beneficial by patients. Limitations included sample size, inpatient-only setting, and possible confounding factors. Larger studies are needed to assess comprehension. Insight from patient responses to guided interviews can guide the future study and development of this technology. ", doi="10.2196/16670", url="https://formative.jmir.org/2020/6/e16670", url="http://www.ncbi.nlm.nih.gov/pubmed/32442148" } @Article{info:doi/10.2196/16656, author="Yin, Kathleen and Jung, Joshua and Coiera, Enrico and Laranjo, Liliana and Blandford, Ann and Khoja, Adeel and Tai, Wan-Tien and Phillips, Psillakis Daniel and Lau, S. Annie Y.", title="Patient Work and Their Contexts: Scoping Review", journal="J Med Internet Res", year="2020", month="Jun", day="2", volume="22", number="6", pages="e16656", keywords="self-care", keywords="burden of illness", keywords="self-management", abstract="Background: Having patients self-manage their health conditions is a widely promoted concept, but many patients struggle to practice it effectively. Moreover, few studies have analyzed the nature of work required from patients and how such work fits into the context of their daily life. Objective: This study aimed to review the characteristics of patient work in adult patients. Patient work refers to tasks that health conditions impose on patients (eg, taking medications) within a system of contextual factors. Methods: A systematic scoping review was conducted using narrative synthesis. Data were extracted from PubMed, Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO, including studies from August 2013 to August 2018. The included studies focused on adult patients and assessed one or more of the following: (1) physical health--related tasks, (2) cognitive health--related tasks, or (3) contextual factors affecting these tasks. Tasks were categorized according to the themes that emerged: (1) if the task is always visible to others or can be cognitive, (2) if the task must be conducted collaboratively or can be conducted alone, and (3) if the task was done with the purpose of creating resources. Contextual factors were grouped according to the level at which they exert influence (micro, meso, or macro) and where they fit in the patient work system (the macroergonomic layer of physical, social, and organizational factors; the mesoergonomic layer of household and community; and the microergonomic triad of person-task-tools). Results: In total, 67 publications were included, with 58 original research articles and 9 review articles. A variety of patient work tasks were observed, ranging from physical and tangible tasks (such as taking medications and visiting health care professionals) to psychological and social tasks (such as creating coping strategies). Patient work was affected by a range of contextual factors on the micro, meso, or macro levels. Our results indicate that most patient work was done alone, in private, and often imposing cognitive burden with low amounts of support. Conclusions: This review sought to provide insight into the work burden of health management from a patient perspective and how patient context influences such work. For many patients, health-related work is ever present, invisible, and overwhelming. When researchers and clinicians design and implement patient-facing interventions, it is important to understand how the extra work impacts one's internal state and coping strategy, how such work fits into daily routines, and if these changes could be maintained in the long term. ", doi="10.2196/16656", url="https://www.jmir.org/2020/6/e16656", url="http://www.ncbi.nlm.nih.gov/pubmed/32484449" } @Article{info:doi/10.2196/13470, author="Clarke, A. Martina and Fruhling, L. Ann and Sitorius, Marilyn and Windle, A. Thomas and Bernard, L. Tamara and Windle, R. John", title="Impact of Age on Patients' Communication and Technology Preferences in the Era of Meaningful Use: Mixed Methods Study", journal="J Med Internet Res", year="2020", month="Jun", day="1", volume="22", number="6", pages="e13470", keywords="patients", keywords="personal health record", keywords="needs assessment", keywords="data display", keywords="communication", keywords="age groups", abstract="Background: Identifying effective means of communication between patients and their health care providers has a positive impact on patients' satisfaction, adherence, and health-related outcomes. Objective: This study aimed to identify the impact of patients' age on their communication and technology preferences when managing their health. We hypothesize that a patient's age affects their communication and technology preferences when interacting with clinicians and managing their health. Methods: A mixed methods study was conducted to identify the preferences of patients with cardiovascular diseases. Results were analyzed based on the patients' age. Grounded theory was used to analyze the qualitative data. Patients were recruited based on age, gender, ethnicity, and zip code. Results: A total of 104 patients were recruited: 34 young adults (19-39 years), 33 middle aged (40-64), and 37 senior citizens (>65). Young adults (mean 8.29, SD 1.66) reported higher computer self-efficacy than middle-aged participants (mean 5.56, SD 3.43; P<.05) and senior citizens (mean 47.55, SD 31.23; P<.05). Qualitative analysis identified the following three themes: (1) patient engagement (young adults favored mobile technologies and text messaging, middle-aged patients preferred phone calls, and senior citizens preferred direct interactions with the health care provider); (2) patient safety (young adults preferred electronic after-visit summaries [AVS] and medication reconciliation over the internet; middle-aged patients preferred paper-based or emailed AVS and medication reconciliation in person; senior citizens preferred paper-based summaries and in-person medication reconciliation); (3) technology (young adults preferred smartphones and middle-aged patients and senior citizens preferred tablets or PCs). Middle-aged patients were more concerned about computer security than any other group. A unique finding among senior citizens was the desire for caregivers to have access to their personal health record (PHR). Conclusions: Patients of different ages have different communication and technology preferences and different preferences with respect to how they would like information presented to them and how they wish to interact with their provider. The PHR is one approach to improving patient engagement, but nontechnological options need to be sustained to support all patients. ", doi="10.2196/13470", url="https://www.jmir.org/2020/6/e13470", url="http://www.ncbi.nlm.nih.gov/pubmed/32478658" } @Article{info:doi/10.2196/17372, author="Tian, Xu and Xu, Ling-Li and Liu, Xiao-Ling and Chen, Wei-Qing", title="Enhanced Patient Education for Colonic Polyp and Adenoma Detection: Meta-Analysis of Randomized Controlled Trials", journal="JMIR Mhealth Uhealth", year="2020", month="Jun", day="1", volume="8", number="6", pages="e17372", keywords="colonoscopy", keywords="bowel preparation", keywords="patient education", keywords="polyp detection rate", keywords="adenoma detection rate", keywords="meta-analysis", abstract="Background: To improve patients' comprehension of bowel preparation instructions before colonoscopy, enhanced patient education (EPE) such as cartoon pictures or other visual aids, phone calls, mobile apps, multimedia education and social media apps have been proposed. However, it is uncertain whether EPE can increase the detection rate of colonic polyps and adenomas. Objective: This meta-analysis aimed to evaluate the efficacy of EPE in detecting colonic polyps and adenomas. Methods: We searched PubMed, EMBASE, and Cochrane Central Register of Controlled Trials from their inception to June 2019 for the identification of trials comparing the EPE with standard patient education for outpatients undergoing colonoscopy. We used a random effects model to calculate summary estimates of the polyp detection rate (defined as the number of patients with at least one polyp divided by the total number of patients undergoing selective colonoscopy), adenoma detection rate (defined as the number of patients with at least one adenoma divided by the total number of patients undergoing selective colonoscopy), advanced adenoma detection rate (defined as the number of patients with at least one advanced adenoma divided by the total number of patients undergoing selective colonoscopy), sessile serrated adenoma detection rate (defined as the number of patients with at least one sessile serrated adenoma divided by the total number of patients undergoing selective colonoscopy), cancer detection rate (defined as the number of patients with at least one cancer divided by the total number of patients undergoing selective colonoscopy), or adenoma detection rate - plus (defined as the number of additional adenomas found after the first adenoma per colonoscopy). Moreover, we conducted trial sequential analysis (TSA) to determine the robustness of summary estimates of all primary outcomes. Results: We included 10 randomized controlled trials enrolling 4560 participants for analysis. The meta-analysis suggested that EPE was associated with an increased polyp detection rate (9 trials; 3781 participants; risk ratio [RR] 1.19, 95\% CI 1.05-1.35; P<.05; I2=42\%) and adenoma detection rate (5 trials; 2133 participants; RR 1.37, 95\% CI 1.15-1.64; P<.001; I2=0\%), which were established by TSA. Pooled result from the inverse-variance model illustrated an increase in the sessile serrated adenoma detection rate (3 trials; 1248 participants; odds ratio 1.76, 95\% CI 1.22-2.53; P<.05; I2=0\%). One trial suggested an increase in the adenoma detection rate - plus (RR 4.39, 95\% CI 2.91-6.61; P<.001). Pooled estimates from 3 (1649 participants) and 2 trials (1375 participants) generated no evidence of statistical difference for the advanced adenoma detection rate and cancer detection rate, respectively. Conclusions: The current evidence indicates that EPE should be recommended to instruct bowel preparation in patients undergoing colonoscopy because it can increase the polyp detection rate, adenoma detection rate, and sessile serrated adenoma detection rate. However, further trials are warranted to determine the efficacy of EPE for advanced adenoma detection rate, adenoma detection rate - plus, and cancer detection rate because of limited data. ", doi="10.2196/17372", url="https://mhealth.jmir.org/2020/6/e17372", url="http://www.ncbi.nlm.nih.gov/pubmed/32347798" } @Article{info:doi/10.2196/13808, author="Lim, Jun-Hao and Lim, Cordelia-Kheng-May and Ibrahim, Imliya and Syahrul, Jazlina and Mohamed Zabil, Hazli Mohd and Zakaria, Fadhlina Nor and Daud, Mat Zulfitri Azuan", title="Limitations of Existing Dialysis Diet Apps in Promoting User Engagement and Patient Self-Management: Quantitative Content Analysis Study", journal="JMIR Mhealth Uhealth", year="2020", month="Jun", day="1", volume="8", number="6", pages="e13808", keywords="renal apps", keywords="nutrition", keywords="dialysis", keywords="self-management", keywords="mHealth", abstract="Background: With the unprecedented growth of mobile technology, a plethora of dialysis diet apps have been developed to promote patient dietary self-management. Nevertheless, the utility of such apps remains questionable. Objective: This study aimed to evaluate the content, features, and quality of commercial dialysis diet apps for adult dialysis patients. Methods: This study consisted of a quantitative content analysis of commercial dialysis diet apps downloaded from Google Play and the Apple App Store available in the Asian marketplace, searched for using the following keywords in English: dialysis diet and diet for kidney disease. Free and paid apps available in English that provide nutrition information for adult dialysis patients were included. Apps that were not relevant to the dialysis diet, not meant for patient self-management, or redundant were excluded. Apps were evaluated for language medium (subscore=1), credibility (subscore=1), food database (subscore=1), valuable features (subscore=12), health-behavior theory constructs (subscore=60), and technical quality (subscore=25). The relationships among the variables of interest were determined by Pearson correlation. Stepwise multiple linear regression analysis was performed to identify the features that contribute to greater technical quality of dialysis diet apps. Statistical significance was defined as P<.05. Results: A total of 22 out of 253 apps (8.7\%) were eligible for evaluation. Based on a 100-point scale, the mean overall score of the apps was 31.30 (SD 14.28). Only 5\% (1/22) of the apps offered relevant language options, and 46\% (10/22) contained food databases. In addition, 54\% (12/22) of the apps were not credible. The mean score for valuable features was 3.45 (SD 1.63) out of 12, in which general education (16/22, 73\%), free download (15/22, 68\%), and usability (13/22, 59\%) were the three most popular features. However, the apps scored a mean of 13.41 (SD 11.56) out of 60 for health-behavior theory constructs. The overall app technical quality was considered poor, with a mean score of 2.70 (SD 0.41) out of 5. The scores of valuable features (r=.65, P=.001) and health-behavior theory constructs (r=.55, P=.009) were positively correlated with the overall technical quality of the commercial dialysis diet apps. Features such as free download ($\beta$=.43, P=.03) and usability ($\beta$=.41, P=.03) could significantly determine the functional quality of the apps. Health-behavior theory constructs such as self-monitoring could significantly predict both the subjective quality ($\beta$=.55, P=.008) and the engagement quality ($\beta$=.66, P=.001) of the apps, whereas the information quality domain could be determined by plan or orders ($\beta$=.48, P=.007) and knowledge ($\beta$=.45, P=.01). Conclusions: Although most of the available commercial dialysis diet apps are free and easy to use, they are subject to theory deficiency, limited language options, and a lack of food databases, credibility, tailored education, and overall technical quality. ", doi="10.2196/13808", url="https://mhealth.jmir.org/2020/6/e13808", url="http://www.ncbi.nlm.nih.gov/pubmed/32478665" } @Article{info:doi/10.2196/15976, author="Chen, Chien-I Sonia and Liu, Chenglian and Wang, Zhenyuan and McAdam, Rodney and Brennan, Michael and Davey, Shirley and Cheng, Yuan Teng", title="How Geographical Isolation and Aging in Place Can Be Accommodated Through Connected Health Stakeholder Management: Qualitative Study With Focus Groups", journal="J Med Internet Res", year="2020", month="May", day="27", volume="22", number="5", pages="e15976", keywords="connected health care", keywords="remote areas", keywords="business strategy", keywords="Taiwan", keywords="population aging", keywords="knowledge sharing", abstract="Background: In remote areas, connected health (CH) is needed, but as local resources are often scarce and the purchasing power of residents is usually poor, it is a challenge to apply CH in these settings. In this study, CH is defended as a technological solution for reshaping the direction of health care to be more proactive, preventive, and precisely targeted---and thus, more effective. Objective: The objective of this study was to explore the identity of CH stakeholders in remote areas of Taiwan and their interests and power in order to determine ideal strategies for applying CH. We aimed to explore the respective unknowns and discover insights for those facing similar issues. Methods: Qualitative research was conducted to investigate and interpret the phenomena of the aging population in a remote setting. An exploratory approach was employed involving semistructured interviews with 22 participants from 8 remote allied case studies. The interviews explored perspectives on stakeholder arrangements, including the power and interests of stakeholders and the needs of all the parties in the ecosystem. Results: Results were obtained from in-depth interviews and focus groups that included identifying the stakeholders of remote health and determining how they influence its practice, as well as how associated agreements bring competitive advantages. Stakeholders included people in government sectors, industrial players, academic researchers, end users, and their associates who described their perspectives on their power and interests in remote health service delivery. Specific facilitators of and barriers to effective delivery were identified. A number of themes, such as government interests and power of decision making, were corroborated across rural and remote services. These themes were broadly grouped into the disclosure of conflicts of interest, asymmetry in decision making, and data development for risk assessment. Conclusions: This study contributes to current knowledge by exploring the features of CH in remote areas and investigating its implementation from the perspectives of stakeholder management. It offers insights into managing remote health through a CH platform, which can be used for preliminary quantitative research. Consequently, these findings could help to more effectively facilitate diverse stakeholder engagement for health information sharing and social interaction. ", doi="10.2196/15976", url="http://www.jmir.org/2020/5/e15976/", url="http://www.ncbi.nlm.nih.gov/pubmed/32459181" } @Article{info:doi/10.2196/17505, author="Avdagovska, Melita and Stafinski, Tania and Ballermann, Mark and Menon, Devidas and Olson, Karin and Paul, Pauline", title="Tracing the Decisions That Shaped the Development of MyChart, an Electronic Patient Portal in Alberta, Canada: Historical Research Study", journal="J Med Internet Res", year="2020", month="May", day="26", volume="22", number="5", pages="e17505", keywords="patient portals", keywords="information technology", keywords="decision making", keywords="investments", abstract="Background: Understanding how health organizations decide on information technology (IT) investments is imperative to ensure successful implementation and adoption. There is a high rate of failure and a tendency to downplay the complexity of implementation progression. Alberta Health Services introduced a patient portal called MyChart. Although MyChart allows patients to view appointments and selected laboratory results and to communicate with their providers, its uptake varies. Objective: The study aimed to examine the institutional decision-making processes that shaped the development and implementation of MyChart. Methods: A historical study was conducted based on the 7-step framework, where one engages in a rigorous archival critical analysis (including internal and external criticism) of documents and analysis of interviews. We reviewed and analyzed 423 primary and secondary sources and interviewed 10 key decision makers. Results: Supportive leadership, project management, focused scope, appropriate technology and vendor selection, and quick decision making were some of the facilitators that allowed for the growth of proof of concept. The planning and implementation stages did not depend much on the technology itself but on the various actors who influenced the implementation by exerting power. The main barriers were lack of awareness about the technology, proper training, buy-in from diverse system leaders, and centralized government decision making. Conclusions: Organizational priorities and decision-making tactics influence IT investments, implementation, adoption, and outcomes. Future research could focus on improving the applicability of needs assessments and funding decisions to health care scenarios. ", doi="10.2196/17505", url="http://www.jmir.org/2020/5/e17505/", url="http://www.ncbi.nlm.nih.gov/pubmed/32452811" } @Article{info:doi/10.2196/16795, author="Yu, Biyang and He, Zhe and Xing, Aiwen and Lustria, A. Mia Liza", title="An Informatics Framework to Assess Consumer Health Language Complexity Differences: Proof-of-Concept Study", journal="J Med Internet Res", year="2020", month="May", day="21", volume="22", number="5", pages="e16795", keywords="consumer health informatics", keywords="readability", keywords="digital divide", keywords="health literacy", abstract="Background: The language gap between health consumers and health professionals has been long recognized as the main hindrance to effective health information comprehension. Although providing health information access in consumer health language (CHL) is widely accepted as the solution to the problem, health consumers are found to have varying health language preferences and proficiencies. To simplify health documents for heterogeneous consumer groups, it is important to quantify how CHLs are different in terms of complexity among various consumer groups. Objective: This study aimed to propose an informatics framework (consumer health language complexity [CHELC]) to assess the complexity differences of CHL using syntax-level, text-level, term-level, and semantic-level complexity metrics. Specifically, we identified 8 language complexity metrics validated in previous literature and combined them into a 4-faceted framework. Through a rank-based algorithm, we developed unifying scores (CHELC scores [CHELCS]) to quantify syntax-level, text-level, term-level, semantic-level, and overall CHL complexity. We applied CHELCS to compare posts of each individual on online health forums designed for (1) the general public, (2) deaf and hearing-impaired people, and (3) people with autism spectrum disorder (ASD). Methods: We examined posts with more than 4 sentences of each user from 3 health forums to understand CHL complexity differences among these groups: 12,560 posts from 3756 users in Yahoo! Answers, 25,545 posts from 1623 users in AllDeaf, and 26,484 posts from 2751 users in Wrong Planet. We calculated CHELCS for each user and compared the scores of 3 user groups (ie, deaf and hearing-impaired people, people with ASD, and the public) through 2-sample Kolmogorov-Smirnov tests and analysis of covariance tests. Results: The results suggest that users in the public forum used more complex CHL, particularly more diverse semantics and more complex health terms compared with users in the ASD and deaf and hearing-impaired user forums. However, between the latter 2 groups, people with ASD used more complex words, and deaf and hearing-impaired users used more complex syntax. Conclusions: Our results show that the users in 3 online forums had significantly different CHL complexities in different facets. The proposed framework and detailed measurements help to quantify these CHL complexity differences comprehensively. The results emphasize the importance of tailoring health-related content for different consumer groups with varying CHL complexities. ", doi="10.2196/16795", url="https://www.jmir.org/2020/5/e16795", url="http://www.ncbi.nlm.nih.gov/pubmed/32436849" } @Article{info:doi/10.2196/17955, author="Graham, D. Timothy A. and Ali, Samina and Avdagovska, Melita and Ballermann, Mark", title="Effects of a Web-Based Patient Portal on Patient Satisfaction and Missed Appointment Rates: Survey Study", journal="J Med Internet Res", year="2020", month="May", day="19", volume="22", number="5", pages="e17955", keywords="patient portal", keywords="patient satisfaction", abstract="Background: Although electronic medical record (EMR)-tethered patient portals are common in other countries, they are still emerging in Canada. Objective: We aimed to report user satisfaction and the effects of a patient portal on medical appointment attendance in a Canadian cohort of patients within our publicly funded health care system. Methods: Two surveys were deployed, via email, at 2 weeks and 6 months following the first recorded patient portal access. Database audits of visit attendance were used to supplement and cross reference survey data. Results: Between January 2016 and July 2018, 4296 patients accessed the patient portal. During the study, 28\% (957/3421) consented patient portal users responded to one or more semistructured electronic surveys. Of respondents, 93\% (891/957) reported that the patient portal was easy to use, 51\% (492/975) reported it saved time when scheduling an appointment, and 40\% (382/957) reported that they had to repeat themselves less during appointments. Respondents reported patient portal--related changes in health system use, with 48\% (462/957) reporting avoiding a clinic visit and 2.7\% (26/957) avoiding an emergency department visit. Across 19,968 visits in clinics where the patient portal was introduced, missed appointments were recorded in 9.5\% (858/9021) of non--patient portal user visits, compared with 4.5\% (493/9021) for patient portal users, representing a 53\% relative reduction in no-show rates. Conclusions: Early experience with an EMR-tethered patient portal showed strong reports of positive patient experience, a self-reported decrease in health system use, and a measured decrease in missed appointment rates. Implications on the expanded use of patient portals requires more quantitative and qualitative study in Canada. ", doi="10.2196/17955", url="http://www.jmir.org/2020/5/e17955/", url="http://www.ncbi.nlm.nih.gov/pubmed/32427109" } @Article{info:doi/10.2196/16921, author="Hulter, Pauline and Pluut, Bettine and Leenen-Brinkhuis, Christine and de Mul, Marleen and Ahaus, Kees and Weggelaar-Jansen, Marie Anne", title="Adopting Patient Portals in Hospitals: Qualitative Study", journal="J Med Internet Res", year="2020", month="May", day="19", volume="22", number="5", pages="e16921", keywords="patient portal", keywords="adoption", keywords="adoption processes", keywords="eHealth", abstract="Background: Theoretical models help to explain or predict the adoption of electronic health (eHealth) technology and illustrate the complexity of the adoption process. These models provide insights into general factors that influence the use of eHealth technology. However, they do not give hospitals much actionable knowledge on how to facilitate the adoption process. Objective: Our study aims to provide insights into patient portal adoption processes among patients and hospital staff, including health care professionals (HCPs), managers, and administrative clerks. Studying the experiences and views of stakeholders answers the following question: How can hospitals encourage patients and HCPs to adopt a patient portal? Methods: We conducted 22 semistructured individual and group interviews (n=69) in 12 hospitals and four focus groups with members of national and seminational organizations and patient portal suppliers (n=53). Results: The effort hospitals put into adopting patient portals can be split into three themes. First, inform patients and HCPs about the portal. This communication strategy has four objectives: users should (1) know about the portal, (2) know how the portal works, (3) know that action on the portal is required, and (4) know where to find help with the portal. Second, embed the patient portal in the daily routine of HCPs and management. This involves three forms of support: (1) hospital policy, (2) management by monitoring the numbers, and (3) a structured implementation strategy that includes all staff of one department. Third, try to adjust the portal to meet patients' needs to optimize user-friendliness in two ways: (1) use patients' feedback and (2) focus on optimizing for patients with special needs (eg, low literacy and low digital skills). Conclusions: Asking stakeholders what they have learned from their efforts to stimulate patient portal use in hospitals elicited rich insights into the adoption process. These insights are missing in the theoretical models. Therefore, our findings help to translate the relatively abstract factors one finds in theoretical models to the everyday pragmatics of eHealth projects in hospitals. ", doi="10.2196/16921", url="http://www.jmir.org/2020/5/e16921/", url="http://www.ncbi.nlm.nih.gov/pubmed/32427110" } @Article{info:doi/10.2196/16161, author="McGloin, Helen and O'Connell, Dympna and Glacken, Michele and Mc Sharry, Patsy and Healy, Denise and Winters-O'Donnell, Lisa and Crerand, Kathleen and Gavaghan, Anne and Doherty, Louise", title="Patient Empowerment Using Electronic Telemonitoring With Telephone Support in the Transition to Insulin Therapy in Adults With Type 2 Diabetes: Observational, Pre-Post, Mixed Methods Study", journal="J Med Internet Res", year="2020", month="May", day="14", volume="22", number="5", pages="e16161", keywords="diabetes mellitus", keywords="type 2", keywords="telehealth", keywords="insulin", keywords="empowerment", keywords="self-management", abstract="Background: Initiation of insulin therapy for the management of type 2 diabetes can be an unwelcome and distressful development for patients. Current evidence suggests that telemonitoring can help improve glycemic control in type 2 diabetes and can support empowerment to self-manage diabetes. This telemonitoring intervention was underpinned by an empowerment approach. Objective: This study aimed to evaluate the clinical effectiveness and feasibility and the patients' and health care providers' experiences of a 12-week telemonitoring intervention with telephone support for patients commencing insulin therapy. This paper focuses on the impact on patient empowerment. Methods: An observational, pre-post, multimethod, and triangulation design was employed to study a 12-week automated electronic telemonitoring intervention with telephone support from a diabetes clinical nurse specialist (CNS). Forty patients were recruited from the clinic as they were about to commence insulin therapy. In the quantitative arm, biometric data (hemoglobin A1c [HbA1c] and weight) and psychosocial data (diabetes empowerment scale [DES] scores and diabetes distress scale [DDS] scores) were gathered by the research team at baseline (T1), the end of the intervention (T2), and 3 months postintervention (T3). Data on hospital admission and general practitioner (GP) visits were collected for the duration of the study. In the qualitative arm, separate focus group interviews were conducted with the CNS team supporting the intervention (n=2) and patients (n=16). Results: Of 39 patients who completed the intervention, 23 (59\%) were male. The mean age of the sample was 62.4 years (range 37-80 years). The mean HbA1c (mmol/mol) decreased significantly between T1 and T2 (mean difference [MD] ?17.13; P<.001) and T1 and T3 (MD ?18.16; P<.001), with no significant impact on weight. In the focus groups, patients reported an increased awareness to self-manage diabetes and feelings of safety and comfort. There were 13\% (5/39) of patients who had hypoglycemia on two or more occasions. A significant increase in the mean DES score occurred between T1 and T2 (MD 0.62; P=.001) and T1 and T3 (MD 0.72; P<.001). The mean DDS score decreased between T1 and T2 (MD ?0.64; P=.002) and T1 and T3 (MD ?0.6; P=.002). The mean patient satisfaction with the intervention was above 4 out of possible 5 on all items on the Telemedicine Satisfaction and Usefulness Questionnaire. We observed a reduction in diabetes clinic attendances and GP visits. A significant increase in workload was reported by the CNS team. Conclusions: This intervention had an empowering effect for patients in the self-management of type 2 diabetes and has the potential to meet the need for safer and more effective care in insulin initiation in the community setting. We observed a significant increase in workload for health care staff. Telemonitoring needs to be streamlined with health care delivery and accompanied by adequate support services. ", doi="10.2196/16161", url="https://www.jmir.org/2020/5/e16161", url="http://www.ncbi.nlm.nih.gov/pubmed/32406854" } @Article{info:doi/10.2196/15502, author="Allen, Dacey Jennifer and Reich, Amanda and Cuevas, G. Adolfo and Ladin, Keren", title="Preparing African American Men to Make Informed Prostate Cancer Screening Decisions: Development and Pilot Testing of an Interactive Online Decision Aid", journal="JMIR Mhealth Uhealth", year="2020", month="May", day="5", volume="8", number="5", pages="e15502", keywords="decision support techniques", keywords="prostate neoplasms", keywords="early detection of cancer", keywords="decision making (shared)", keywords="men's health", keywords="minority health", abstract="Background: African American men are at a higher risk of developing and dying from prostate cancer compared to white men. The serum prostate-specific antigen (PSA) screening test has a high risk of false-positive results and overdiagnosis; therefore, it is not routinely recommended. Rather, men are encouraged to make individualized decisions with their medical providers, after being fully informed about its potential benefits, limitations, and risks. Objective: This study aimed to describe the development and pilot testing of an interactive Web-based decision aid (DA; Prostate Cancer Screening Preparation [PCSPrep]) for African American men, designed to promote informed decision making for prostate cancer screening. Methods: Four focus groups (n=33) were conducted to assess men's reactions to DAs developed in prior studies and gather information to modify the content and format. The pilot test employed a pre-posttest evaluation design. A convenience sample of 41 men aged 45-70 years with no history of prostate cancer was recruited from community settings. Participants completed online surveys before and after using PCSPrep that assessed prostate cancer screening knowledge, decision self-efficacy, decisional conflict, and preparation for decision making. Results: Use of PCSPrep was associated with a significant increase in prostate cancer knowledge (49\% vs 62\% correct responses; P<.001), and men also experienced less decisional conflict (24 vs 15 on a scale of 0-100; P=.008). No changes in self-efficacy about decision making or screening preferences were observed. Most men (81\%) reported that using PCSPrep prepared them to make informed decisions in partnership with their provider. Conclusions: PCSPrep was an acceptable DA that improved men's knowledge, reduced decisional conflict, and promoted the perception of being prepared for shared decision making. Further research is needed to test the DA in a larger randomized trial. ", doi="10.2196/15502", url="https://mhealth.jmir.org/2020/5/e15502", url="http://www.ncbi.nlm.nih.gov/pubmed/32369032" } @Article{info:doi/10.2196/15573, author="Fuller, E. Theresa and Pong, D. Denise and Piniella, Nicholas and Pardo, Michael and Bessa, Nathaniel and Yoon, Catherine and Boxer, B. Robert and Schnipper, Lawrence Jeffrey and Dalal, K. Anuj", title="Interactive Digital Health Tools to Engage Patients and Caregivers in Discharge Preparation: Implementation Study", journal="J Med Internet Res", year="2020", month="Apr", day="28", volume="22", number="4", pages="e15573", keywords="patient engagement", keywords="care transitions", keywords="health information technology", keywords="implementation science", abstract="Background: Poor discharge preparation during hospitalization may lead to adverse events after discharge. Checklists and videos that systematically engage patients in preparing for discharge have the potential to improve safety, especially when integrated into clinician workflow via the electronic health record (EHR). Objective: This study aims to evaluate the implementation of a suite of digital health tools integrated with the EHR to engage hospitalized patients, caregivers, and their care team in preparing for discharge. Methods: We used the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework to identify pertinent research questions related to implementation. We iteratively refined patient and clinician-facing intervention components using a participatory process involving end users and institutional stakeholders. The intervention was implemented at a large academic medical center from December 2017 to July 2018. Patients who agreed to participate were coached to watch a discharge video, complete a checklist assessing discharge readiness, and request postdischarge text messaging with a physician 24 to 48 hours before their expected discharge date, which was displayed via a patient portal and bedside display. Clinicians could view concerns reported by patients based on their checklist responses in real time via a safety dashboard integrated with the EHR and choose to open a secure messaging thread with the patient for up to 7 days after discharge. We used mixed methods to evaluate our implementation experience. Results: Of 752 patient admissions, 510 (67.8\%) patients or caregivers participated: 416 (55.3\%) watched the video and completed the checklist, and 94 (12.5\%) completed the checklist alone. On average, 4.24 concerns were reported per each of the 510 checklist submissions, most commonly about medications (664/2164, 30.7\%) and follow-up (656/2164, 30.3\%). Of the 510 completed checklists, a member of the care team accessed the safety dashboard to view 210 (41.2\%) patient-reported concerns. For 422 patient admissions where postdischarge messaging was available, 141 (33.4\%) patients requested this service; of these, a physician initiated secure messaging for 3 (2.1\%) discharges. Most patient survey participants perceived that the intervention promoted self-management and communication with their care team. Patient interview participants endorsed gaps in communication with their care team and thought that the video and checklist would be useful closer toward discharge. Clinicians participating in focus groups perceived the value for patients but suggested that low awareness and variable workflow regarding the intervention, lack of technical optimization, and inconsistent clinician leadership limited the use of clinician-facing components. Conclusions: A suite of EHR-integrated digital health tools to engage patients, caregivers, and clinicians in discharge preparation during hospitalization was feasible, acceptable, and valuable; however, important challenges were identified during implementation. We offer strategies to address implementation barriers and promote adoption of these tools. Trial Registration: ClinicalTrials.gov NCT03116074; https://clinicaltrials.gov/ct2/show/NCT03116074. ", doi="10.2196/15573", url="http://www.jmir.org/2020/4/e15573/", url="http://www.ncbi.nlm.nih.gov/pubmed/32343248" } @Article{info:doi/10.2196/13780, author="Vandekerckhove, Pieter and de Mul, Marleen and Bramer, M. Wichor and de Bont, A. Antoinette", title="Generative Participatory Design Methodology to Develop Electronic Health Interventions: Systematic Literature Review", journal="J Med Internet Res", year="2020", month="Apr", day="27", volume="22", number="4", pages="e13780", keywords="cocreation", keywords="co-design", keywords="participatory design", keywords="telemedicine", keywords="eHealth", keywords="medical informatics", keywords="method", keywords="methodology", keywords="review", abstract="Background: Generative participatory design (PD) may help in developing electronic health (eHealth) interventions. PD is characterized by the involvement of all stakeholders in creative activities. This is different from the traditional user-centered design, where users are less involved. When looking at PD from a research through design perspective, it is important to summarize the reasons for choosing a certain form of generative PD to further develop its methodology. However, the scientific literature is currently unclear about which forms of PD are used to develop eHealth and which arguments are used to substantiate the decision to use a certain form of generative PD. Objective: This study aimed to explore the reporting and substantiation of generative PD methodologies in empirical eHealth studies published in scientific journals to further develop PD methodology in the field of eHealth. Methods: A systematic literature review following the Cochrane guidelines was conducted in several databases (EMBASE, MEDLINE Ovid, Web of Science, and CINAHL EBSCOhost). Data were extracted on the recruitment and management of stakeholders, the use of tools, and the use of outcome measures. Results: Of the 3131 studies initially identified, 69 were selected for qualitative synthesis. The reporting was very variable, depending to a large extent on whether the study stated that reporting on the PD process was a major aim. The different levels of reporting and substantiation of the choices of a recruitment strategy, stakeholder management, and tools and outcome measures are presented. Only a few authors explicitly used arguments directly related to PD guiding principles such as democratic, mutual learning, tacit and latent knowledge, and collective creativity. Even though PD principles were not always explicitly discussed in the method descriptions of the studies, they were implicitly present, mostly in the descriptions of the use of PD tools. The arguments used to substantiate the choices made in stakeholder management, PD tools, and the type of outcome measures adopted point to the involvement of PD principles. Conclusions: Studies that have used a PD research methodology to develop eHealth primarily substantiate the choice of tools made and much less the use of stakeholders and outcome measures. ", doi="10.2196/13780", url="http://www.jmir.org/2020/4/e13780/", url="http://www.ncbi.nlm.nih.gov/pubmed/32338617" } @Article{info:doi/10.2196/16324, author="Rezaei Aghdam, Atae and Watson, Jason and Cliff, Cynthia and Miah, Jahan Shah", title="Improving the Theoretical Understanding Toward Patient-Driven Health Care Innovation Through Online Value Cocreation: Systematic Review", journal="J Med Internet Res", year="2020", month="Apr", day="24", volume="22", number="4", pages="e16324", keywords="value cocreation", keywords="health care organizations", keywords="digital health platforms", keywords="online health communities", keywords="patient empowerment", abstract="Background: Patient participation in the health care domain has surged dramatically through the availability of digital health platforms and online health communities (OHCs). Such patient-driven service innovation has both potential and challenges for health care organizations. Over the last 5 years, articles have surfaced that focus on value cocreation in health care services and the importance of engaging patients and other actors in service delivery. However, a theoretical understanding of how to use OHCs for this purpose is still underdeveloped within the health care service ecosystem. Objective: This paper aimed to introduce a theoretical discussion for better understanding of the potential of OHCs for health care organizations, in particular, for patient empowerment. Methods: This literature review study involved a comprehensive search using 12 electronic databases (EMBASE, PsycINFO, Web of Science, Scopus, ScienceDirect, Medical Literature Analysis and Retrieval System Online, PubMed, Elton B Stephens Co [academic], Cumulative Index of Nursing and Allied Health Literature, Accelerated Information Sharing for Law Enforcement, Association for Computing Machinery, and Google Scholar) from 2013 to 2019. A total of 1388 studies were identified from the database search. After removing duplicates and applying inclusion criteria, we thematically analyzed 56 articles using the Braun and Clarke thematic analysis approach. Results: We identified a list of 5 salient themes: communication extension, improved health literacy for patients and health care organizations, communication transparency with patients, informational and social support for patients, and patient empowerment in self-management. The most frequent theme was communication extension, which covers 39\% (22/56) of the literature. This theme reported that an extension of communication between patients, caregivers, and physicians and organizations led to new opportunities to create value with minimal time and cost restrictions. Improved health literacy and communication transparency with patients were the second and third most frequent themes, respectively, covering 26\% (15/56) and 25\% (14/56) of the literature, respectively. The frequency of these themes indicated that the use of OHCs to generate new knowledge from patients' interactions helped health care organizations to customize treatment plans and establish transparent and effective communication between health care organizations and patients. Furthermore, of the 56 studies, 13 (23\%) and 10 (17\%) studies contended the opportunity of using OHCs in terms of informational and emotional support and empowering patients in their self-management of diseases. Conclusions: This review enables better understanding of the current state of the art of the online value cocreation and its potential for health care organizations. This study found that the opportunities for health care organizations through enhancement of patient participation and their cocreation of value in digital health platforms have been rapidly increasing. The identified gaps and opportunities in this study would identify avenues for future directions in modernized and more effective value-oriented health care informatics research. ", doi="10.2196/16324", url="http://www.jmir.org/2020/4/e16324/", url="http://www.ncbi.nlm.nih.gov/pubmed/32329736" } @Article{info:doi/10.2196/15822, author="Maclachlan, R. Liam and Mills, Kathryn and Lawford, J. Belinda and Egerton, Thorlene and Setchell, Jenny and Hall, M. Leanne and Plinsinga, L. Melanie and Besomi, Manuela and Teo, Ling Pek and Eyles, P. Jillian and Mellor, Rebecca and Melo, Luciano and Robbins, Sarah and Hodges, W. Paul and Hunter, J. David and Vicenzino, Bill and Bennell, L. Kim", title="Design, Delivery, Maintenance, and Outcomes of Peer-to-Peer Online Support Groups for People With Chronic Musculoskeletal Disorders: Systematic Review", journal="J Med Internet Res", year="2020", month="Apr", day="24", volume="22", number="4", pages="e15822", keywords="social support", keywords="musculoskeletal diseases", keywords="online social networking", keywords="empowerment", abstract="Background: Online support groups (OSGs) are one way for people with chronic diseases, their family or friends, and health professionals to communicate, gain information, and provide social support. As the number of peer-to-peer OSGs for chronic musculoskeletal conditions grows, it is important to gain insight into the different designs of groups available, who is accessing them, if and how they may be effective, and what strategies are being used to implement or increase consumer engagement. Objective: The objectives of this systematic review of people with musculoskeletal conditions were to (1) describe the design features (functions, usage options, moderation, and expert input) of peer-to-peer OSGs, (2) describe the characteristics of the individuals using peer-to-peer OSGs, (3) synthesize the evidence on outcomes of participation, and (4) identify strategies used in the delivery and maintenance of OSGs. Methods: A search comprising terms related to the population (people with musculoskeletal disorders) and the intervention (peer-to-peer OSGs) was conducted in 6 databases. Results were filtered from 1990 (internet inception) to February 2019. Studies identified in the search were screened according to predefined eligibility criteria using a 2-step process. Quantitative studies were appraised by 2 reviewers using the Risk Of Bias In Non-Randomized Studies of Interventions tool. Qualitative studies were appraised by 2 different reviewers using the Critical Appraisal Skills Programme checklist. Extracted data were synthesized narratively. Results: We examined 21 studies with low to moderate risk of bias. Of these studies, 13 studies included OSGs hosted on public platforms, 11 studies examined OSGs that were conducted in English, and 6 studies used moderators or peer leaders to facilitate engagement. Studies either reported the number of OSG members (n=1985 across all studies) or the number of posts (range: 223-200,000). The majority of OSG members were females who were not full-time employees and with varied levels of education. There were no randomized controlled trials measuring the efficacy of OSGs. Qualitative and quantitative studies identified empowerment, social support, self-management behavior, and health literacy as primary constructs to measure OSG efficacy. Neutral or marginal improvement was reported in these constructs. Sharing experiences and a greater level of engagement appeared to have an important influence on OSGs efficacy. The extent to which members posted on the website influenced engagement. Conclusions: Across a diverse range of designs, languages, included features, and delivery platforms, peer-to-peer OSGs for chronic musculoskeletal conditions attract predominantly female participants of all ages and education levels. The level of participation of a member appears to be related to their perceived benefit, health literacy, and empowerment. Future studies are needed to identify which design and maintenance strategies have superior efficacy and whether there are concomitant improvements in health outcomes for people with chronic musculoskeletal conditions resulting from participation in OSGs. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display\_record.php?ID=CRD42018090326 ", doi="10.2196/15822", url="http://www.jmir.org/2020/4/e15822/", url="http://www.ncbi.nlm.nih.gov/pubmed/32329746" } @Article{info:doi/10.2196/16768, author="Li, Yan and Ye, Shan and Zhou, Yidong and Mao, Feng and Guo, Hailing and Lin, Yan and Zhang, Xiaohui and Shen, Songjie and Shi, Na and Wang, Xiaojie and Sun, Qiang", title="Web-Based Medical Information Searching by Chinese Patients With Breast Cancer and its Influence on Survival: Observational Study", journal="J Med Internet Res", year="2020", month="Apr", day="17", volume="22", number="4", pages="e16768", keywords="breast cancer", keywords="internet", keywords="disease-free survival", keywords="breast conserving therapy", keywords="online information", keywords="satisfaction level", abstract="Background: The internet allows patients to easily look for health information. However, how Chinese patients with breast cancer use the internet has rarely been investigated, and there is a scarcity of information about the influence of internet use on survival. Objective: This observational study aimed to investigate the details of online medical information searching by Chinese patients with breast cancer and to determine whether internet use has any survival benefits. Methods: Patients who were diagnosed with invasive breast cancer at Peking Union Medical College Hospital between January 2014 and December 2015 were enrolled. We obtained information on their internet-searching behavior and gathered data from the patients' medical and follow-up records. The associations between internet use and other clinic-pathological factors were analyzed. A Cox proportional-hazards model and the Kaplan-Meier method were used for disease-free survival (DFS) analyses. Results: A total of 973 patients with invasive breast cancer who underwent definitive surgery took part in the study. Among them, 477 cases (49.0\%) performed web-based breast cancer information searching before the initial treatment. A multivariate logistic regression analysis suggested that web-based breast cancer information searching was significantly associated with younger age (odds ratio [OR] 0.95, 95\% CI 0.94-0.97, P<.001), higher education level (OR 1.37, 95\% CI 1.01--1.86, P=.04), and breast conserving surgery (OR 1.35, 95\% CI 1.04-1.77, P=.03). Baidu (73.4\%, 350/477) and WeChat (66.7\%, 318/477) were the two most popular online information sources for breast cancer; however, only 44.9\% (214/477) felt satisfied with the online information. In contrast to the nonweb searching group, the web-using patients who were satisfied with online information showed significantly improved DFS (hazard ratio 0.26; 95\% CI 0.08-0.88, P=.03). Conclusions: The patients who were most likely to search the internet for breast cancer information were younger and well-educated, and they were more likely to have breast conserving therapy. Web-using patients who were satisfied with the internet information showed significantly improved DFS. Patients should browse credible websites offering accurate and updated information, and website developers should provide high-quality and easy-to-understand information to better meet the needs of patients with breast cancer. ", doi="10.2196/16768", url="http://www.jmir.org/2020/4/e16768/", url="http://www.ncbi.nlm.nih.gov/pubmed/32301740" } @Article{info:doi/10.2196/15098, author="Hyun, Chul and McMenamin, Joseph and Ko, Okhyun and Kim, Soonsik", title="Efficacy of a Mobile Texting App (HepTalk) in Encouraging Patient Participation in Viral Hepatitis B Care: Development and Cohort Study", journal="JMIR Mhealth Uhealth", year="2020", month="Apr", day="1", volume="8", number="4", pages="e15098", keywords="chronic hepatitis B", keywords="hepatitis B virus infection", keywords="linkage to care", keywords="mobile texting app", keywords="remote consultation", abstract="Background: Chronic hepatitis B virus (HBV) infection is a major cause of liver-related morbidity and mortality among Asian Americans in the United States. Despite the available resources, a majority of HBV-infected individuals are not able to access adequate health care owing to numerous barriers. Objective: This study aimed to assess the efficacy of a newly developed mobile texting app (HepTalk) in overcoming these barriers and improving patient engagement and health care access among HBV-infected and nonimmune individuals. Methods: HepTalk was employed for two-way communication between participants and patient navigators. A total of 82 Korean American participants who were either HBV infected or nonimmune to HBV, identified from a community hepatitis B campaign in New York, were enrolled in the study. After informed consent was obtained, both the frequency and themes of the text messages were evaluated. The effects of this communication on linkage to care at the end of the 6-month intervention period were analyzed and discussed. Results: On average, patient navigators sent and received 14 and 8 messages per participant, respectively, during the 6-month period. The themes of the messages were similar to the following 4 categories: finding providers, scheduling appointments with providers, health education, and financial issues. Of the 82 participants, 78 were linked to care within 6 months (a 95\% linkage rate). Conclusions: HepTalk may be employed as an effective and strategic tool to facilitate communicative interaction between patients and patient navigators or health care providers, thereby improving patient engagement and health care access. ", doi="10.2196/15098", url="https://mhealth.jmir.org/2020/4/e15098", url="http://www.ncbi.nlm.nih.gov/pubmed/32234704" } @Article{info:doi/10.2196/16546, author="Zhu, Panpan and Shen, Jiang and Xu, Man", title="Patients' Willingness to Share Information in Online Patient Communities: Questionnaire Study", journal="J Med Internet Res", year="2020", month="Apr", day="1", volume="22", number="4", pages="e16546", keywords="online patient community", keywords="information sharing", keywords="willingness to share", keywords="questionnaire", keywords="structural equation", abstract="Background: Online patient communities provide new channels for users to access and share medical information. In-depth study of users' willingness to share information in online patient communities is of great significance for improving the level of information sharing among the patient community and the long-term development of communities. Objective: The aim of this study was to build a model of factors affecting patients' willingness to share medical information from the perspective of both positive and negative utilities. Specifically, we aimed to determine the influence of online information support and privacy concerns, as well as the moderating effect of disease severity and information sensitivity of different patients on their willingness to share. Methods: Data from 490 users with experience in online patient communities were collected through a questionnaire survey, and structural equations were applied to empirically verify the model hypotheses. Results: Privacy concerns negatively affected the patients' willingness to share information (P<.001), whereas online information support positively affected patients' willingness to share information (P<.001), and information sensitivity negatively moderated the impact of online information support on sharing willingness (P=.01). Disease severity positively moderated the impact of privacy concerns on sharing willingness (P=.05). However, the hypotheses that information sensitivity is a negative moderator and disease severity is a positive moderator of the impact of privacy concerns on sharing willingness could not be supported. Conclusions: To improve the level of user information sharing, the online patient community should design a safe user registration process, ensure the confidentiality of information, reduce the privacy concerns of users, and accurately identify the information needs of patients to provide personalized support services. ", doi="10.2196/16546", url="https://www.jmir.org/2020/4/e16546", url="http://www.ncbi.nlm.nih.gov/pubmed/32234698" } @Article{info:doi/10.2196/15772, author="Drewniak, Daniel and Gl{\"a}ssel, Andrea and Hodel, Martina and Biller-Andorno, Nikola", title="Risks and Benefits of Web-Based Patient Narratives: Systematic Review", journal="J Med Internet Res", year="2020", month="Mar", day="26", volume="22", number="3", pages="e15772", keywords="patient experiences", keywords="personal narratives as topic", keywords="systematic review", abstract="Background: Patient narratives are illustrative, individual accounts of patients' experiences with certain health conditions. Web-based patient narratives have become widely available on the internet and in social media, as part of electronically available patient decision aids or Web-based databases. In recent years, the role of patient narratives as a source of information, insight, and support for both health care users and providers has increasingly been emphasized. Although the potential impact of patient stories has high immediate plausibility, it is of interest to know if this impact can be captured in quantitative studies. Objective: This review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for (potential) patients, relatives, or health care professionals. Methods: We searched the following databases from August 2017 to March 2019: Medical Literature Analysis and Retrieval System Online, PsycInfo, Sociological Abstracts, Web of Science, and EMBASE. Titles and abstracts of the retrieved studies were reviewed and assessed for the inclusion and exclusion criteria. Papers were included if they studied the following: (1) (potential) patients, relatives, or health care professionals; (2) the effects of Web-based patient narratives that were generated scientifically (eg, through qualitative research methods); and (3) were quantitative studies. Furthermore, 2 authors independently performed an assessment of the quality of the included studies using a validated checklist. Results: Of 4226 documents, 17 studies met the inclusion criteria. The studies investigated 10 different sources of Web-based patient narratives. Sample sizes ranged from 23 to 2458. The mean score of the quality assessment was 82.6 (range 61-100). Effects regarding five different purposes were identified as follows: provide information, engage, model behavior, persuade, and comfort. We found positive effects in every category and negative effects in one category (persuade). Several of the reported effects are rather small or were identified under specific experimental conditions. Conclusions: Patient narratives seem to be a promising means to support users in improving their understanding of certain health conditions and possibly to provide emotional support and have an impact on behavioral changes. There is limited evidence for beneficial effects on some outcomes. However, narratives are characterized by considerable heterogeneity and the investigated outcomes are hardly comparable with each other, which makes the overall judgment difficult. As there are numerous possible measures and purposes of narratives, quantifying the impact of Web-based patient narratives remains a challenge. Future research is needed to define the optimal standards for quantitative approaches to narrative-based interventions. ", doi="10.2196/15772", url="http://www.jmir.org/2020/3/e15772/", url="http://www.ncbi.nlm.nih.gov/pubmed/32213468" } @Article{info:doi/10.2196/16102, author="Grundstrom, Casandra and Korhonen, Olli and V{\"a}yrynen, Karin and Isomursu, Minna", title="Insurance Customers' Expectations for Sharing Health Data: Qualitative Survey Study", journal="JMIR Med Inform", year="2020", month="Mar", day="26", volume="8", number="3", pages="e16102", keywords="data sharing", keywords="qualitative research", keywords="survey", keywords="health insurance", keywords="insurance", keywords="medical informatics", keywords="health services", abstract="Background: Insurance organizations are essential stakeholders in health care ecosystems. For addressing future health care needs, insurance companies require access to health data to deliver preventative and proactive digital health services to customers. However, extant research is limited in examining the conditions that incentivize health data sharing. Objective: This study aimed to (1) identify the expectations of insurance customers when sharing health data, (2) determine the perceived intrinsic value of health data, and (3) explore the conditions that aid in incentivizing health data sharing in the relationship between an insurance organization and its customer. Methods: A Web-based survey was distributed to randomly selected customers from a Finnish insurance organization through email. A single open-text answer was used for a qualitative data analysis through inductive coding, followed by a thematic analysis. Furthermore, the 4 constructs of commitment, power, reciprocity, and trust from the social exchange theory (SET) were applied as a framework. Results: From the 5000 customers invited to participate, we received 452 surveys (response rate: 9.0\%). Customer characteristics were found to reflect customer demographics. Of the 452 surveys, 48 (10.6\%) open-text responses were skipped by the customer, 57 (12.6\%) customers had no expectations from sharing health data, and 44 (9.7\%) customers preferred to abstain from a data sharing relationship. Using the SET framework, we found that customers expected different conditions to be fulfilled by their insurance provider based on the commitment, power, reciprocity, and trust constructs. Of the 452 customers who completed the surveys, 64 (14.2\%) customers required that the insurance organization meets their data treatment expectations (commitment). Overall, 4.9\% (22/452) of customers were concerned about their health data being used against them to profile their health, to increase insurance prices, or to deny health insurance claims (power). A total of 28.5\% (129/452) of customers expected some form of benefit, such as personalized digital health services, and 29.9\% (135/452) of customers expected finance-related compensation (reciprocity). Furthermore, 7.5\% (34/452) of customers expected some form of empathy from the insurance organization through enhanced transparency or an emotional connection (trust). Conclusions: To aid in the design and development of digital health services, insurance organizations need to address the customers' expectations when sharing their health data. We established the expectations of customers in the social exchange of health data and explored the perceived values of data as intangible goods. Actions by the insurance organization should aim to increase trust through a culture of transparency, commitment to treat health data in a prescribed manner, provide reciprocal benefits through digital health services that customers deem valuable, and assuage fears of health data being used to prevent providing insurance coverage or increase costs. ", doi="10.2196/16102", url="http://medinform.jmir.org/2020/3/e16102/", url="http://www.ncbi.nlm.nih.gov/pubmed/32213467" } @Article{info:doi/10.2196/13763, author="Wieringa, H. Thomas and Sanchez-Herrera, F. Manuel and Espinoza, R. Nataly and Tran, Viet-Thi and Boehmer, Kasey", title="Crafting Care That Fits: Workload and Capacity Assessments Complementing Decision Aids in Implementing Shared Decision Making", journal="J Participat Med", year="2020", month="Mar", day="25", volume="12", number="1", pages="e13763", keywords="decision making", keywords="decision support techniques", keywords="patient-centered care", doi="10.2196/13763", url="http://jopm.jmir.org/2020/1/e13763/" } @Article{info:doi/10.2196/17004, author="Poncette, Akira-Sebastian and Rojas, Pablo-David and Hofferbert, Joscha and Valera Sosa, Alvaro and Balzer, Felix and Braune, Katarina", title="Hackathons as Stepping Stones in Health Care Innovation: Case Study With Systematic Recommendations", journal="J Med Internet Res", year="2020", month="Mar", day="24", volume="22", number="3", pages="e17004", keywords="digital health", keywords="transdisciplinary research", keywords="hackathon", keywords="technological innovation", keywords="patient-centered care", keywords="social media", abstract="Background: Until recently, developing health technologies was time-consuming and expensive, and often involved patients, doctors, and other health care professionals only as passive recipients of the end product. So far, users have been minimally involved in the ideation and creation stages of digital health technologies. In order to best address users' unmet needs, a transdisciplinary and user-led approach, involving cocreation and direct user feedback, is required. In this context, hackathon events have become increasingly popular in generating enthusiasm for user-centered innovation. Objective: This case study describes preparatory steps and the performance of a health hackathon directly involving patients and health care professionals at all stages. Feasibility and outcomes were assessed, leading to the development of systematic recommendations for future hackathons as a vehicle for bottom-up innovation in health care. Methods: A 2-day hackathon was conducted in February 2017 in Berlin, Germany. Data were collected through a field study. Collected field notes were subsequently discussed in 15 informal meetings among the research team. Experiences of conducting two further hackathons in December 2017 and November 2018 were included. Results: In total, 30 participants took part, with 63\% (19/30) of participants between 25 and 34 years of age, 30\% (9/30) between 35 and 44 years of age, and 7\% (2/30) younger than 25 years of age. A total of 43\% (13/30) of the participants were female. The participation rate of medical experts, including patients and health care professionals, was 30\% (9/30). Five multidisciplinary teams were formed and each tackled a specific health care problem. All presented projects were apps: a chatbot for skin cancer recognition, an augmented reality exposure-based therapy (eg, for arachnophobia), an app for medical neighborhood connectivity, a doctor appointment platform, and a self-care app for people suffering from depression. Patients and health care professionals initiated all of the projects. Conducting the hackathon resulted in significant growth of the digital health community of Berlin and was followed up by larger hackathons. Systematic recommendations for conducting cost-efficient hackathons (n?30) were developed, including aspects of community building, stakeholder engagement, mentoring, themes, announcements, follow-up, and timing for each step. Conclusions: This study shows that hackathons are effective in bringing innovation to health care and are more cost- and time-efficient and potentially more sustainable than traditional medical device and digital product development. Our systematic recommendations can be useful to other individuals and organizations that want to establish user-led innovation in academic hospitals by conducting transdisciplinary hackathons. ", doi="10.2196/17004", url="http://www.jmir.org/2020/3/e17004/", url="http://www.ncbi.nlm.nih.gov/pubmed/32207691" } @Article{info:doi/10.2196/14874, author="Marier-Desch{\^e}nes, Pascale and Gagnon, Marie-Pierre and D{\'e}ry, Julien and Lamontagne, Marie-Eve", title="Traumatic Brain Injury and Sexuality: User Experience Study of an Information Toolkit", journal="J Participat Med", year="2020", month="Mar", day="18", volume="12", number="1", pages="e14874", keywords="user-centered design", keywords="user experience", keywords="traumatic brain injury", keywords="sexuality", keywords="health information", abstract="Background: After having sustained a traumatic brain injury (TBI), individuals are at risk of functional impairments in information processing, abstract reasoning, executive functioning, attention, and memory. This affects different aspects of communicative functioning. Specific strategies can be adopted to improve the provision of health information to individuals with TBI, including the development of written materials and nonwritten media. Objective: A user-centered design was adopted to codevelop four audiovisual presentations, a double-sided information sheet, and a checklist aimed at informing individuals about post-TBI sexuality. The last phase of the project was the assessment of the user experience of the information toolkit, based on the User Experience Honeycomb model. Methods: Overall, two small group discussions and one individual semistructured interview were conducted with individuals with moderate to severe TBI. Results: The participants mentioned that the toolkit was easily usable and would have fulfilled a need for information on post-TBI sexuality during or after rehabilitation. They mostly agreed that the minimalist visual content was well-organized, attractive, and relevant. The information was easily located, the tools were accessible in terms of reading and visibility, and the content was also considered credible. Conclusions: Aspects such as usability, usefulness, desirability, accessibility, credibility, and findability of information were viewed positively by the participants. Further piloting of the toolkit is recommended to explore its effects on the awareness of the potential sexual repercussions of TBI in individuals and partners. ", doi="10.2196/14874", url="https://jopm.jmir.org/2020/1/e14874" } @Article{info:doi/10.2196/14646, author="Masters, Ken and Loda, Teresa and Johannink, Jonas and Al-Abri, Rashid and Herrmann-Werner, Anne", title="Surgeons' Interactions With and Attitudes Toward E-Patients: Questionnaire Study in Germany and Oman", journal="J Med Internet Res", year="2020", month="Mar", day="9", volume="22", number="3", pages="e14646", keywords="internet", keywords="e-patient", keywords="internet-informed patient", keywords="doctor-patient relationship", keywords="attitude", keywords="digital health", keywords="technology", keywords="e-physician", keywords="empowerment", keywords="physician", keywords="communication", abstract="Background: Doctors' interactions with and attitudes toward e-patients have an overall impact on health care delivery. Objective: This study aimed to gauge surgeons' interactions with e-patients, their attitudes toward those e-patient activities, the possible impact on the delivery of health care, and the reasons behind those activities and attitudes. Methods: We created a paper-based and electronic survey form based on pertinent variables identified in the literature, and from March 2018 to July 2018 we surveyed 49 surgeons in Germany and 59 surgeons in Oman, asking them about their interactions with and attitudes toward e-patients. Data were stored in Microsoft Excel and SPSS, and descriptive statistics, Pearson correlations, and chi-square tests were performed on the data. Results: Of our sample, 71\% (35/49) of the German surgeons and 56\% (33/59) of the Omani surgeons communicated electronically with their patients. Although the German surgeons spent a greater percentage of Internet usage time on work-related activities ($\chi$218=32.5; P=.02) than the Omani surgeons, there were many similarities in their activities. An outstanding difference was that the German surgeons used email with their patients more than the Omani surgeons ($\chi$21=9.0; P=.003), and the Omani surgeons used social media, specifically WhatsApp, more than the German surgeons ($\chi$21=18.6; P<.001). Overall, the surgeons were equally positive about the most common e-patient activities such as bringing material from the internet to the consultation (mean 4.11, SD 1.6), although the German surgeons (mean 3.43, SD 1.9) were more concerned (P=.001) than the Omani surgeons (mean 2.32, SD 1.3) about the potential loss of control and time consumption (German: mean 5.10, SD 1.4 and Omani: mean 3.92, SD 1.6; P<.001). Conclusions: The interactions show a high degree of engagement with e-patients. The differences between the German and the Omani surgeons in the preferred methods of communication are possibly closely linked to cultural differences and recent historical events. These differences may, moreover, indicate e-patients' desired method of electronic communication to include social media. The low impact of surgeons' attitudes on the activities may also result from a normalization of many e-patient activities, irrespective of the doctors' attitudes and influences. ", doi="10.2196/14646", url="http://www.jmir.org/2020/3/e14646/", url="http://www.ncbi.nlm.nih.gov/pubmed/32149714" } @Article{info:doi/10.2196/15065, author="Hochberg, Irit and Allon, Raviv and Yom-Tov, Elad", title="Assessment of the Frequency of Online Searches for Symptoms Before Diagnosis: Analysis of Archival Data", journal="J Med Internet Res", year="2020", month="Mar", day="6", volume="22", number="3", pages="e15065", keywords="search engines", keywords="diagnosis", keywords="screening", abstract="Background: Surveys suggest that a large proportion of people use the internet to search for information on medical symptoms they experience and that around one-third of the people in the United States self-diagnose using online information. However, surveys are known to be biased, and the true rates at which people search for information on their medical symptoms before receiving a formal medical diagnosis are unknown. Objective: This study aimed to estimate the rate at which people search for information on their medical symptoms before receiving a formal medical diagnosis by a health professional. Methods: We collected queries made on a general-purpose internet search engine by people in the United States who self-identified their diagnosis from 1 of 20 medical conditions. We focused on conditions that have evident symptoms and are neither screened systematically nor a part of usual medical care. Thus, they are generally diagnosed after the investigation of specific symptoms. We evaluated how many of these people queried for symptoms associated with their medical condition before their formal diagnosis. In addition, we used a survey questionnaire to assess the familiarity of laypeople with the symptoms associated with these conditions. Results: On average, 15.49\% (1792/12,367, SD 8.4\%) of people queried about symptoms associated with their medical condition before receiving a medical diagnosis. A longer duration between the first query for a symptom and the corresponding diagnosis was correlated with an increased likelihood of people querying about those symptoms (rho=0.6; P=.005); similarly, unfamiliarity with the association between a condition and its symptom was correlated with an increased likelihood of people querying about those symptoms (rho=?0.47; P=.08). In addition, worrying symptoms were 14\% more likely to be queried about. Conclusions: Our results indicate that there is large variability in the percentage of people who query the internet for their symptoms before a formal medical diagnosis is made. This finding has important implications for systems that attempt to screen for medical conditions. ", doi="10.2196/15065", url="https://www.jmir.org/2020/3/e15065", url="http://www.ncbi.nlm.nih.gov/pubmed/32141835" } @Article{info:doi/10.2196/13120, author="Yigzaw, Yitbarek Kassaye and Wynn, Rolf and Marco-Ruiz, Luis and Budrionis, Andrius and Oyeyemi, Oluwafemi Sunday and Fagerlund, Johansen Asbj{\o}rn and Bellika, Gustav Johan", title="The Association Between Health Information Seeking on the Internet and Physician Visits (The Seventh Troms{\o} Study - Part 4): Population-Based Questionnaire Study", journal="J Med Internet Res", year="2020", month="Mar", day="5", volume="22", number="3", pages="e13120", keywords="eHealth", keywords="internet", keywords="health care service", keywords="physician visit", keywords="Troms{\o} study", keywords="health information seeking", keywords="Web search engine", keywords="health app", keywords="social media", keywords="video search engine", abstract="Background: The internet is being widely used for seeking health information. However, there is no consensus on the association between health information seeking on the internet and the use of health care services. Objective: We examined the association between health information seeking via the internet and physician visits. In addition, we investigated the association between online health information seeking and the decisions to visit and not to visit a physician. Methods: We used the cross-sectional electronic health (eHealth) data of 18,197 participants from the seventh survey of the Troms{\o} Study (Troms{\o} 7). The participants were aged ?40 years and living in Troms{\o}, Norway. We used logistic regression models to examine the association between online health information seeking and physician visits, the decision to visit a physician, and the decision not to visit a physician, with adjustment for the demographic status, socioeconomic status, and health status of the participants. Results: The use of Web search engines was associated with a physician visit. However, the association was moderated by age, and the OR decreased as age increased. The ORs for the use of Web search engines were 1.99 (95\% CI 1.94-2.02) and 1.07 (95\% CI 1.03-1.12) at ages 40 and 80 years, respectively. The decision to visit a physician was associated with the use of Web search engines (OR 2.95, 95\% CI 2.03-4.46), video search engines (OR 1.43, 95\% CI 1.21-1.70), and health apps (OR 1.26, 95\% CI 1.13-1.42). The association between social media use and the decision to visit a physician was moderated by gender. Women who used social media had 1.42 (95\% CI 1.31-1.55) times higher odds of deciding to visit a physician, whereas the decision to visit a physician was not different between men who used social media and those who did not use social media. Conversely, the decision not to visit a physician was associated with the use of Web search engines (OR 2.78, 95\% CI 1.92-4.18), video search engines (OR 1.27, 95\% CI 1.07-1.51), social media (OR 1.28, 95\% CI 1.10-1.49), and health apps (OR 1.20, 95\% CI 1.07-1.35). Conclusions: Health information found on the internet was positively associated with both the decision to visit a physician and the decision not to visit a physician. However, the association of health information seeking with the decision to visit a physician was slightly stronger than the association with the decision not to visit a physician. This could imply that the use of eHealth services is associated with a resultant increase in physician visits. In summary, our findings suggest that the internet serves as a supplement to health care services rather than as a replacement. ", doi="10.2196/13120", url="https://www.jmir.org/2020/3/e13120", url="http://www.ncbi.nlm.nih.gov/pubmed/32134387" } @Article{info:doi/10.2196/14095, author="Chung, Kyungmi and Cho, Young Hee and Kim, Ran Young and Jhung, Kyungun and Koo, Seon Hwa and Park, Young Jin", title="Medical Help-Seeking Strategies for Perinatal Women With Obstetric and Mental Health Problems and Changes in Medical Decision Making Based on Online Health Information: Path Analysis", journal="J Med Internet Res", year="2020", month="Mar", day="4", volume="22", number="3", pages="e14095", keywords="perinatal care", keywords="obstetrics", keywords="mental health", keywords="information seeking behavior", keywords="help-seeking behavior", keywords="self efficacy", keywords="health literacy", keywords="consultation", keywords="decision making", keywords="internet", abstract="Background: Previous studies have revealed that most pregnant women rarely discuss informal information found on the internet with health professionals and have frequently expressed concerns for medical experts' reactions to the online information they shared, as well as the lack of time to consult the medical experts in general. To date, little information is available on the effect of individual differences in utilizing medical help-seeking strategies on their medical decisions during the perinatal period. Objective: The objectives of this study were (1) to determine associations among perinatal women's medical help-seeking strategies, changes in medical decision making, and online health information utilization with a focus on the mediating effect of self-efficacy in perinatal health literacy on the intent to consult health professionals, and (2) to clarify these associations in perinatal women with two different medical problems: obstetric and mental health. Methods: A total of 164 perinatal women aged 24 to 47 years (mean 34.64, SD 3.80) repeatedly completed the Problem Solving in Medicine and Online Health Information Utilization questionnaires to examine the moderating effect of two types of medical problems on their decision-making processes. To validate the hypothesized relationships in the proposed conceptual model encompassing obstetric and mental health problem-solving models, path analyses were performed. Results: This study found that some perinatal women, who use an online informal medical help-seeking (OIMH) strategy, would be more likely to change their medical decisions based only on internet-based information without consulting health professionals (P<.001), compared to other women using different medical help-seeking strategies. Particularly, this concern is significantly prevalent when encountering obstetric problems during the perinatal period (obstetric problem-solving: P<.001; mental health problem-solving: P=.02). Furthermore, perinatal women with mental health issues using the OIMH strategy showed a significant difference in intent to consult health professionals based on online health information when the medical problem they had to solve was different (obstetric problem-solving: P=.94; mental health problem-solving: P=.003). Conclusions: Despite the positive mediating effects of perinatal women's enhanced health literacy on the intent to discuss personal medical issues with health professionals based on online health information, the strategy used is of fundamental importance for understanding their help-seeking and decision-making processes during the perinatal period. Beyond a short consultation to steer patients quickly and authoritatively towards an obstetric doctor's choice of action, it is recommended in this study that obstetricians attempt to provide their patients with needed context for the information found online. To fully explain this information with an open mind, they should actively develop or support information and communications technology (ICT)-based health information services. ", doi="10.2196/14095", url="https://www.jmir.org/2020/3/e14095", url="http://www.ncbi.nlm.nih.gov/pubmed/32130139" } @Article{info:doi/10.2196/17060, author="Talboom-Kamp, Esther and Tossaint-Schoenmakers, Rosian and Goedhart, Annelijn and Versluis, Anke and Kasteleyn, Marise", title="Patients' Attitudes Toward an Online Patient Portal for Communicating Laboratory Test Results: Real-World Study Using the eHealth Impact Questionnaire", journal="JMIR Form Res", year="2020", month="Mar", day="4", volume="4", number="3", pages="e17060", keywords="patient portals", keywords="eHealth Impact Questionnaire", keywords="eHIQ", keywords="laboratory test results", keywords="attitude to health", keywords="self efficacy", keywords="telemedicine", keywords="usability", abstract="Background: Communicating laboratory test results online has several advantages for patients, such as improving clinical efficiency and accessibility, thereby helping patients to take an active role in managing their health. Objective: This study aimed to investigate the experiences and self-efficacy of patients using an online patient portal that communicates laboratory test results. Methods: We used the online-administered eHealth Impact Questionnaire to explore patients' attitudes toward the portal. Patients visiting the portal were asked to complete the questionnaire. The subscale Information and Presentation assessed the usability of the patient portal and the subscale Motivation and Confidence to Act assessed self-efficacy to determine whether patients were motivated to act on the presented information. We used a cutoff score of 65 or greater to determine whether the portal was rated positively. Results: The questionnaire was completed by 354 of 13,907 patients who viewed their laboratory results in the patient portal, with a response rate of 2.55\%. The mean Information and Presentation score was 67.70 (SD 13.12) and the mean Motivation and Confidence to Act score was 63.59 (SD 16.22). We found a positive, significant correlation between the 2 subscales (r345=.77, P<.001). Conclusions: Patients participating in the study rated the usability of the portal positively. However, the portal only slightly helped patients to take an active role in managing their own health. The low response rate precludes generalization of the results. Future research should examine avenues to further increase patients' self-efficacy and study whether portal acceptability differs in subgroups. Patient portals conveying laboratory test results in understandable language seem usable and potentially provide a viable way to help patients take a more active role in managing their own health. ", doi="10.2196/17060", url="https://formative.jmir.org/2020/3/e17060", url="http://www.ncbi.nlm.nih.gov/pubmed/32024632" } @Article{info:doi/10.2196/16831, author="Kristjansdottir, Birna Ol{\"o}f and B{\o}r{\o}sund, Elin and Westeng, Marianne and Ruland, Cornelia and Stenberg, Una and Zangi, A. Heidi and Stange, Kurt and Mirkovic, Jelena", title="Mobile App to Help People With Chronic Illness Reflect on Their Strengths: Formative Evaluation and Usability Testing", journal="JMIR Form Res", year="2020", month="Mar", day="4", volume="4", number="3", pages="e16831", keywords="mobile app", keywords="self-management", keywords="strengths", keywords="chronic illness", keywords="rheumatology", keywords="usability", keywords="formative evaluation", abstract="Background: Supporting patient engagement and empowerment is increasingly seen as essential in providing person-centered health care to people with chronic illness. Mobile apps helping patients reflect on their concerns as preparation for consultations with their health care providers can have beneficial effects on the consultation quality. However, apps focusing on empowerment and personal strengths are still scarce. Objective: This study aimed to (1) develop a mobile app to support patients with rheumatic diseases in reflecting on their strengths in preparation for consultations with health care providers and (2) explore patients' perceived usability of the app in a nonclinical test setting. Methods: A prototype app was developed based on input from patients and health care providers, as reported in previous studies. The app was designed for use in self-management support settings aiming to promote awareness of strengths and to focus attention on strengths in the patient-health care provider dialogue. The features included in the prototype were as follows: (1) introduction to the topic of strengths, (2) list of examples of strengths to promote reflection and registration of own strengths, (3) summary of registered strengths, (4) value-based goal setting, (5) linking of strengths to goals, (6) summary of all registrations, and (7) options to share summary digitally or as a print version. In this study, the app was refined through a formative evaluation with patients and health care providers recruited from a specialized rheumatology hospital unit. Patients' perceptions of the app's usability were explored in a test setting with self-report measurements and semistructured interviews. The interviews were audiotaped, transcribed, and analyzed with directed content analysis. Data from questionnaires were analyzed with descriptive statistics. Results: Developmental and formative evaluation included 18 patients and 7 health care providers. The evaluation resulted in minor adjustments to the prototype but no major changes in features. The usability testing included 12 patients. All participants found the usability acceptable; the median score on the System Usability Scale was 86.3 (range 70-100). All reported that it was meaningful and relevant to use the app. Out of 12 participants, 9 (75\%) reported becoming more aware of their own strengths by using the app; 1 (8\%) disagreed and 2 (17\%) provided a neutral response. The results on the goal-related feature were mixed, with half of the patients finding it useful to link strengths to concrete goals. A statistically significant positive change from pre- to postintervention was identified on measures of self-efficacy and negative emotions. Conclusions: In this formative evaluation of a mobile app to promote patients' reflections on their strengths, patients perceived the app as meaningful and supporting awareness. The results suggest the usefulness of building in functionality to support use of strengths and goal attainment. Further studies on efficacy and usability in a clinical setting, including health care providers, are needed. ", doi="10.2196/16831", url="https://formative.jmir.org/2020/3/e16831", url="http://www.ncbi.nlm.nih.gov/pubmed/32130126" } @Article{info:doi/10.2196/14410, author="Zhong, Xiang and Park, Jaeyoung and Liang, Muxuan and Shi, Fangyun and Budd, R. Pamela and Sprague, L. Julie and Dewar, A. Marvin", title="Characteristics of Patients Using Different Patient Portal Functions and the Impact on Primary Care Service Utilization and Appointment Adherence: Retrospective Observational Study", journal="J Med Internet Res", year="2020", month="Feb", day="25", volume="22", number="2", pages="e14410", keywords="patient portal function", keywords="user subgroup identification", keywords="heterogeneous causal effect", keywords="primary care service utilization", keywords="appointment adherence", abstract="Background: Patient portals are now widely available and increasingly adopted by patients and providers. Despite the growing research interest in patient portal adoption, there is a lack of follow-up studies describing the following: whether patients use portals actively; how frequently they use distinct portal functions; and, consequently, what the effects of using them are, the understanding of which is paramount to maximizing the potential of patient portals to enhance care delivery. Objective: To investigate the characteristics of primary care patients using different patient portal functions and the impact of various portal usage behaviors on patients' primary care service utilization and appointment adherence. Methods: A retrospective, observational study using a large dataset of 46,544 primary care patients from University of Florida Health was conducted. Patient portal users were defined as patients who adopted a portal, and adoption was defined as the status that a portal account was opened and kept activated during the study period. Then, users were further classified into different user subgroups based on their portal usage of messaging, laboratory, appointment, and medication functions. The intervention outcomes were the rates of primary care office visits categorized as arrived, telephone encounters, cancellations, and no-shows per quarter as the measures of primary care service utilization and appointment adherence. Generalized linear models with a panel difference-in-differences study design were then developed to estimate the rate ratios between the users and the matched nonusers of the four measurements with an observational window of up to 10 quarters after portal adoption. Results: Interestingly, a high propensity to adopt patient portals does not necessarily imply more frequent use of portals. In particular, the number of active health problems one had was significantly negatively associated with portal adoption (odds ratios [ORs] 0.57-0.86, 95\% CIs 0.51-0.94, all P<.001) but was positively associated with portal usage (ORs 1.37-1.76, 95\% CIs 1.11-2.22, all P?.01). The same was true for being enrolled in Medicare for portal adoption (OR 0.47, 95\% CI 0.41-0.54, P<.001) and message usage (OR 1.44, 95\% CI 1.03-2.03, P=.04). On the impact of portal usage, the effects were time-dependent and specific to the user subgroup. The most salient change was the improvement in appointment adherence, and patients who used messaging and laboratory functions more often exhibited a larger reduction in no-shows compared to other user subgroups. Conclusions: Patients differ in their portal adoption and usage behaviors, and the portal usage effects are heterogeneous and dynamic. However, there exists a lack of match in the patient portal market where patients who benefit the most from patient portals are not active portal adopters. Our findings suggest that health care delivery planners and administrators should remove the barriers of adoption for the portal beneficiaries; in addition, they should incorporate the impact of portal usage into care coordination and workflow design, ultimately aligning patients' and providers' needs and functionalities to effectively deliver patient-centric care. ", doi="10.2196/14410", url="https://www.jmir.org/2020/2/e14410", url="http://www.ncbi.nlm.nih.gov/pubmed/32130124" } @Article{info:doi/10.2196/13622, author="van Kuppenveld, IR Savannah and van Os-Medendorp, Harmieke and Tiemessen, AM Nicole and van Delden, JM Johannes", title="Real-Time Access to Electronic Health Record via a Patient Portal in a Tertiary Hospital: Is it Harmful? A Retrospective Mixed Methods Observational Study", journal="J Med Internet Res", year="2020", month="Feb", day="11", volume="22", number="2", pages="e13622", keywords="patient portals", keywords="communication", keywords="health services research", keywords="information technology", abstract="Background: The rapid implementation of patient portals, through which patients can view their electronic health record, creates possibilities for information exchange and communication between patients and health care professionals. However, real-time disclosure of test results and clinical reports poses a source of concern. Objective: This study aimed to examine negative experiences resulting from real-time disclosure of medical information through a patient portal. Methods: Data were collected over a 2-year period in 4 datasets consisting of incidents reported by health care professionals, complaints of patients, patient issues at a portal helpdesk, and a survey among health care professionals. Incidents, complaints, issues, and answers on the survey were counted and analyzed through an iterative process of coding. Results: Within the chosen time frame of 2 years, on average, 7978 patients per month logged into the portal at least once. The amount of negative incidents and complaints was limited. A total of 6 incidents, 4 complaints, and 2506 issues at the helpdesk concerning the patient portal were reported, of which only 2, 1, and 3 cases of these respective databases concerned real-time disclosure of medical information through the patient portal. Moreover, 32 out of 216 health care professionals reported patients that had negative experiences with real-time disclosure. Most negative consequences concerned confused and anxious patients when confronted with unexpected or incomprehensible results. Conclusions: Real-time access through a patient portal did not substantially result in negative consequences. The negative consequences that did occur can be mitigated by adequate preparation and instruction of patients concerning the various functionalities of the patient portal, real-time disclosure of test results in particular, and can also be managed through educating health care professionals about the patient portal and making adjustments in the daily practice of health care professionals. ", doi="10.2196/13622", url="http://www.jmir.org/2020/2/e13622/" } @Article{info:doi/10.2196/15723, author="Baun, Christina and Vogsen, Marianne and Nielsen, Konge Marie and H{\o}ilund-Carlsen, Flemming Poul and Hildebrandt, Grubbe Malene", title="Perspective of Patients With Metastatic Breast Cancer on Electronic Access to Scan Results: Mixed Methods Study", journal="J Med Internet Res", year="2020", month="Feb", day="10", volume="22", number="2", pages="e15723", keywords="patient accessible electronic health record", keywords="electronic health records", keywords="patient access to records", keywords="scan result", keywords="breast cancer", keywords="patient perspective", keywords="breast neoplasms", abstract="Background: Patient-accessible electronic health records give patients quick and easy access to their health care data, enabling them to view their test results online prior to a clinic visit. Hospital reports can be difficult for patients to understand, however, and can lead to unnecessary anxiety. Objective: We aimed to investigate the attitudes and experiences of Danish patients with metastatic breast cancer in using electronic health records to view their own scan results. Methods: We conducted a prospective mixed methods study in a sequential design at our institution during 2018. Participants were women with metastatic breast cancer who were having scans every 3 months (combined positron emission tomography and computed tomography or computed tomography alone) to monitor treatment effects. Participants first received an online questionnaire about their knowledge and use of online access to scan results. We then conducted semistructured interviews with 4 women who used the online access to view their scan results. Results: A total of 46 patients received the questionnaire (median age 66, SD 11.8, range 34-84 years). Of these women, 38 (83\%) completed the survey (median age 69, SD 10.7, range 42-84 years). Most patients (34/38) were aware of the opportunity to access their reports online, but only 40\% (15/38) used this access to read their scan results. Barriers to online access were (1) anxiety over reading the scan results in the absence of clinician support, and (2) a preference to receive all disease information at their next hospital appointment. The patients who read their scan result found that facilitators were greater transparency and empowerment, and barriers were the consequences of reading bad news, the feeling of dilemma about the access, and the medical terminology. Conclusions: Patients with metastatic breast cancer generally had a positive attitude toward electronic access to their scan results, and those who used this opportunity played a greater participatory role in their disease and its management. Others described the potential distress this opportunity caused. The study findings suggest that immediate online access to scan results should be available to patients, but it needs a support function alongside that ensures optimal patient care. ", doi="10.2196/15723", url="https://www.jmir.org/2020/2/e15723" } @Article{info:doi/10.2196/16144, author="Zanaboni, Paolo and Kummervold, Egil Per and S{\o}rensen, Tove and Johansen, Alise Monika", title="Patient Use and Experience With Online Access to Electronic Health Records in Norway: Results From an Online Survey", journal="J Med Internet Res", year="2020", month="Feb", day="7", volume="22", number="2", pages="e16144", keywords="electronic health records", keywords="patient online access", keywords="patient portals", keywords="service utilization", keywords="satisfaction", keywords="patient empowerment", abstract="Background: The electronic health record (EHR) has been fully established in all Norwegian hospitals. Patient-accessible electronic health records (PAEHRs) are available to citizens aged 16 years and older through the national health portal Helsenorge. Objective: This study aimed at understanding how patients use PAEHRs. Three research questions were addressed in order to explore (1) characteristics of users, (2) patients' use of the service, and (3) patient experience with the service. Methods: We conducted an online survey of users who had accessed their EHR online at least once through the national health portal. Patients from two of the four health regions in Norway were invited to participate. Quantitative data were supplemented by qualitative information. Results: A total of 1037 respondents participated in the survey, most of whom used the PAEHR regularly (305/1037, 29.4\%) or when necessary (303/1037, 29.2\%). Service utilization was associated with self-reported health, age, gender, education, and health care professional background. Patients found the service useful to look up health information (687/778, 88.3\%), keep track of their treatment (684/778, 87.9\%), prepare for a hospital appointment (498/778, 64.0\%), and share documents with their general practitioner (292/778, 37.5\%) or family (194/778, 24.9\%). Most users found it easy to access their EHR online (965/1037, 93.1\%) and did not encounter technical challenges. The vast majority of respondents (643/755, 85.2\%) understood the content, despite over half of them acknowledging some difficulties with medical terms or phrases. The overall satisfaction with the service was very high (700/755, 92.7\%). Clinical advantages to the patients included enhanced knowledge of their health condition (565/691, 81.8\%), easier control over their health status (685/740, 92.6\%), better self-care (571/653, 87.4\%), greater empowerment (493/674, 73.1\%), easier communication with health care providers (493/618, 79.8\%), and increased security (655/730, 89.7\%). Patients with complex, long-term or chronic conditions seemed to benefit the most. PAEHRs were described as useful, informative, effective, helpful, easy, practical, and safe. Conclusions: PAEHRs in Norway are becoming a mature service and are perceived as useful by patients. Future studies should include experimental designs focused on specific populations or chronic conditions that are more likely to achieve clinically meaningful benefits. Continuous evaluation programs should be conducted to assess implementation and changes of wide-scale routine services over time. ", doi="10.2196/16144", url="https://www.jmir.org/2020/2/e16144", url="http://www.ncbi.nlm.nih.gov/pubmed/32031538" } @Article{info:doi/10.2196/12336, author="Prior, Sarah and Miller, Andrea and Campbell, Steven and Linegar, Karen and Peterson, Gregory", title="The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study", journal="J Participat Med", year="2020", month="Feb", day="7", volume="12", number="1", pages="e12336", keywords="stroke", keywords="communication", keywords="research", keywords="qualitative", keywords="aphasia", keywords="participatory research", abstract="Background: Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia. Objective: The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia. Methods: A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these reflections. Results: The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia. The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement. Conclusions: Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants. ", doi="10.2196/12336", url="https://jopm.jmir.org/2020/1/e12336" } @Article{info:doi/10.2196/14436, author="Mullens, Lendon Cody and Hernandez, Andres J. and Anderson, D. Evan and Allen, Lindsay", title="Just Because (Most) Hospitals Are Publishing Charges Does Not Mean Prices Are More Transparent", journal="JMIR Med Inform", year="2020", month="Feb", day="6", volume="8", number="2", pages="e14436", keywords="health care costs", keywords="delivery of health care", keywords="health policy", abstract="Background: The Centers for Medicare and Medicaid Services (CMS) recently mandated that all hospitals publish their charge description masters (CDMs) online, in a machine-readable format, by January 1, 2019. In addition, CMS recommended that CDM data be made available in a manner that was consumer friendly and accessible to patients. Objective: This study aimed to (1) examine all hospitals across the state of Pennsylvania to understand policy compliance and (2) use established metrics to measure accessibility and consumer friendliness of posted CDM data. Methods: A cross-sectional analysis was conducted to quantify hospital website compliance with the recent CMS policies requiring hospitals to publish their CDM. Data were collected from all Pennsylvania hospital websites. Consumer friendliness was assessed based on searchability, number of website clicks to data, and supplemental educational materials accompanying CDMs such as videos or text. Results: Most hospitals (189/234, 80.1\%) were compliant, but significant variation in data presentation was observed. The mean number of website clicks to the CDM was 3.7 (SD 1.3; range: 1-8). A total of 23.1\% of compliant hospitals provided no supplemental educational material with their CDM. Conclusions: Although disclosure of charges has improved, the data may not be sufficient to meaningfully influence patient decision making. ", doi="10.2196/14436", url="http://medinform.jmir.org/2020/2/e14436/" } @Article{info:doi/10.2196/13830, author="Bidmon, Sonja and Elshiewy, Ossama and Terlutter, Ralf and Boztug, Yasemin", title="What Patients Value in Physicians: Analyzing Drivers of Patient Satisfaction Using Physician-Rating Website Data", journal="J Med Internet Res", year="2020", month="Feb", day="3", volume="22", number="2", pages="e13830", keywords="online physician ratings", keywords="patient satisfaction", keywords="multiattribute models", keywords="health care management", abstract="Background: Customer-oriented health care management and patient satisfaction have become important for physicians to attract patients in an increasingly competitive environment. Satisfaction influences patients' choice of physician and leads to higher patient retention and higher willingness to engage in positive word of mouth. In addition, higher satisfaction has positive effects on patients' willingness to follow the advice given by the physician. In recent years, physician-rating websites (PRWs) have emerged in the health care sector and are increasingly used by patients. Patients' usage includes either posting an evaluation to provide feedback to others about their own experience with a physician or reading evaluations of other patients before choosing a physician. The emergence of PRWs offers new avenues to analyze patient satisfaction and its key drivers. PRW data enable both satisfaction analyses and implications on the level of the individual physician as well as satisfaction analyses and implications on an overall level. Objective: This study aimed to identify linear and nonlinear effects of patients' perceived quality of physician appointment service attributes on the overall evaluation measures that are published on PRWs. Methods: We analyzed large-scale survey data from a German PRW containing 84,680 surveys of patients rating a total of 7038 physicians on 24 service attributes and 4 overall evaluation measures. Elasticities are estimated from regression models with perceived attribute quality as explanatory variables and overall evaluation measures as dependent variables. Depending on the magnitude of the elasticity, service attributes are classified into 3 categories: attributes with diminishing, constant, or increasing returns to overall evaluation. Results: The proposed approach revealed new insights into what patients value when visiting physicians and what they take for granted. Improvements in the physicians' pleasantness and friendliness have increasing returns to the publicly available overall evaluation (b=1.26). The practices' cleanliness (b=1.05) and the communication behavior of a physician during a visit (b level between .97 and 1.03) have constant returns. Indiscretion in the waiting rooms, extended waiting times, and a lack of modernity of the medical equipment (b level between .46 and .59) have the strongest diminishing returns to overall evaluation. Conclusions: The categorization of the service attributes supports physicians in identifying potential for improvements and prioritizing resource allocation to improve the publicly available overall evaluation ratings on PRWs. Thus, the study contributes to patient-centered health care management and, furthermore, promotes the utility of PRWs through large-scale data analysis. ", doi="10.2196/13830", url="https://www.jmir.org/2020/2/e13830", url="http://www.ncbi.nlm.nih.gov/pubmed/32012063" } @Article{info:doi/10.2196/14679, author="Meyer, D. Ashley N. and Giardina, D. Traber and Spitzmueller, Christiane and Shahid, Umber and Scott, T. Taylor M. and Singh, Hardeep", title="Patient Perspectives on the Usefulness of an Artificial Intelligence--Assisted Symptom Checker: Cross-Sectional Survey Study", journal="J Med Internet Res", year="2020", month="Jan", day="30", volume="22", number="1", pages="e14679", keywords="clinical decision support systems", keywords="technology", keywords="diagnosis", keywords="patient safety", keywords="symptom checker", keywords="computer-assisted diagnosis", abstract="Background: Patients are increasingly seeking Web-based symptom checkers to obtain diagnoses. However, little is known about the characteristics of the patients who use these resources, their rationale for use, and whether they find them accurate and useful. Objective: The study aimed to examine patients' experiences using an artificial intelligence (AI)--assisted online symptom checker. Methods: An online survey was administered between March 2, 2018, through March 15, 2018, to US users of the Isabel Symptom Checker within 6 months of their use. User characteristics, experiences of symptom checker use, experiences discussing results with physicians, and prior personal history of experiencing a diagnostic error were collected. Results: A total of 329 usable responses was obtained. The mean respondent age was 48.0 (SD 16.7) years; most were women (230/304, 75.7\%) and white (271/304, 89.1\%). Patients most commonly used the symptom checker to better understand the causes of their symptoms (232/304, 76.3\%), followed by for deciding whether to seek care (101/304, 33.2\%) or where (eg, primary or urgent care: 63/304, 20.7\%), obtaining medical advice without going to a doctor (48/304, 15.8\%), and understanding their diagnoses better (39/304, 12.8\%). Most patients reported receiving useful information for their health problems (274/304, 90.1\%), with half reporting positive health effects (154/302, 51.0\%). Most patients perceived it to be useful as a diagnostic tool (253/301, 84.1\%), as a tool providing insights leading them closer to correct diagnoses (231/303, 76.2\%), and reported they would use it again (278/304, 91.4\%). Patients who discussed findings with their physicians (103/213, 48.4\%) more often felt physicians were interested (42/103, 40.8\%) than not interested in learning about the tool's results (24/103, 23.3\%) and more often felt physicians were open (62/103, 60.2\%) than not open (21/103, 20.4\%) to discussing the results. Compared with patients who had not previously experienced diagnostic errors (missed or delayed diagnoses: 123/304, 40.5\%), patients who had previously experienced diagnostic errors (181/304, 59.5\%) were more likely to use the symptom checker to determine where they should seek care (15/123, 12.2\% vs 48/181, 26.5\%; P=.002), but they less often felt that physicians were interested in discussing the tool's results (20/34, 59\% vs 22/69, 32\%; P=.04). Conclusions: Despite ongoing concerns about symptom checker accuracy, a large patient-user group perceived an AI-assisted symptom checker as useful for diagnosis. Formal validation studies evaluating symptom checker accuracy and effectiveness in real-world practice could provide additional useful information about their benefit. ", doi="10.2196/14679", url="http://www.jmir.org/2020/1/e14679/", url="http://www.ncbi.nlm.nih.gov/pubmed/32012052" } @Article{info:doi/10.2196/16713, author="Yang, Xin and Parton, Jason and Lewis, Dwight and Yang, Ning and Hudnall, Matthew", title="Effect of Patient-Physician Relationship on Withholding Information Behavior: Analysis of Health Information National Trends Survey (2011-2018) Data", journal="J Med Internet Res", year="2020", month="Jan", day="29", volume="22", number="1", pages="e16713", keywords="withholding information behavior", keywords="patient-physician relationship", keywords="electronic medical records", keywords="privacy", abstract="Background: Patients' withholding information from doctors can undermine medical treatment, create barriers for appropriate diagnoses, and increase systemic cost in health care systems. To date, there is limited literature detailing the association between trends of patients withholding information behavior (WIB) and the patient-physician relationship (PPR). Objective: The aim of this study was to explore the prevalence trend of WIB after 2011 and examine the effects of PPR on WIB and its time trend. Methods: A total of 5 iterations of data from the Health Information National Trends Survey (years: 2011-2018; n=11,954) were used to explore curvilinear trends of WIB among the US population. Multiple logistic regression models were used to examine curvilinear time trends of WIB, effects of PPR on WIB, and moderation effects of PPR on the WIB time trend. Results: The WIB prevalence has an increasing trend before 2014, which has the highest rate of 13.57\%, and then it decreases after 2014 to 8.65\%. The trend of WIB is curvilinear as the quadratic term in logistic regression model was statistically significant (P=.04; beta=?.022; SE=0.011; odds ratio [OR] 0.978, 95\% CI 0.957-0.999). PPR is reversely associated with WIB (P<.001; beta=?.462; SE=0.097; OR 0.630, 95\% CI 0.518-0.766) and has a significant moderation effect on time trends (P=.02; beta=?.06; SE=0.025; OR 0.941, 95\% CI 0.896-0.989). In general, poor quality of PPR not only significantly increased the WIB probability but also postponed the change of point for WIB curvilinear trend. Conclusions: Findings suggest that the time trend of WIB between 2011 and 2018 is curvilinear and moderated by the quality of the PPR. Given these results, providers may reduce WIB by improving PPR. More research is needed to confirm these findings. ", doi="10.2196/16713", url="http://www.jmir.org/2020/1/e16713/", url="http://www.ncbi.nlm.nih.gov/pubmed/32012083" } @Article{info:doi/10.2196/15593, author="Hyatt, Amelia and Lipson-Smith, Ruby and Morkunas, Bryce and Krishnasamy, Meinir and Jefford, Michael and Baxter, Kathryn and Gough, Karla and Murphy, Declan and Drosdowsky, Allison and Phipps-Nelson, Jo and White, Fiona and White, Alan and Serong, Lesley and McDonald, Geraldine and Milne, Donna", title="Testing Consultation Recordings in a Clinical Setting With the SecondEars Smartphone App: Mixed Methods Implementation Study", journal="JMIR Mhealth Uhealth", year="2020", month="Jan", day="21", volume="8", number="1", pages="e15593", keywords="mHealth", keywords="cancer", keywords="mobile apps", keywords="implementation", keywords="pilot", keywords="consultation audio recording", abstract="Background: Health care systems are increasingly looking to mobile device technologies (mobile health) to improve patient experience and health outcomes. SecondEars is a smartphone app designed to allow patients to audio-record medical consultations to improve recall, understanding, and health care self-management. Novel health interventions such as SecondEars often fail to be implemented post pilot-testing owing to inadequate user experience (UX) assessment, a key component of a comprehensive implementation strategy. Objective: This study aimed to pilot the SecondEars app within an active clinical setting to identify factors necessary for optimal implementation. Objectives were to (1) investigate patient UX and acceptability, utility, and satisfaction with the SecondEars app, and (2) understand health professional perspectives on issues, solutions, and strategies for effective implementation of SecondEars. Methods: A mixed methods implementation study was employed. Patients were invited to test the app to record consultations with participating oncology health professionals. Follow-up interviews were conducted with all participating patients (or carers) and health professionals, regarding uptake and extent of app use. Responses to the Mobile App Rating Scale (MARS) were also collected. Interviews were analyzed using interpretive descriptive methodology; all quantitative data were analyzed descriptively. Results: A total of 24 patients used SecondEars to record consultations with 10 multidisciplinary health professionals. In all, 22 of these patients used SecondEars to listen to all or part of the recording, either alone or with family. All 100\% of patient participants reported in the MARS that they would use SecondEars again and recommend it to others. A total of 3 themes were identified from the patient interviews relating to the UX of SecondEars: empowerment, facilitating support in cancer care, and usability. Further, 5 themes were identified from the health professional interviews relating to implementation of SecondEars: changing hospital culture, mitigating medico-legal concerns, improving patient care, communication, and practical implementation solutions. Conclusions: Data collected during pilot testing regarding recording use, UX, and health professional and patient perspectives will be important for designing an effective implementation strategy for SecondEars. Those testing the app found it useful and felt that it could facilitate the benefits of consultation recordings, along with providing patient empowerment and support. Potential issues regarding implementation were discussed, and solutions were generated. Trial Registration: Australia and New Zealand Clinical Trials Registry ACTRN12618000730202;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373915\&isClinicalTrial=False ", doi="10.2196/15593", url="https://mhealth.jmir.org/2020/1/e15593", url="http://www.ncbi.nlm.nih.gov/pubmed/31961333" } @Article{info:doi/10.2196/12859, author="Russ, Stephanie and Latif, Zahira and Hazell, Leah Ahmarah and Ogunmuyiwa, Helen and Tapper, Josephine and Wachuku-King, Sylvia and Sevdalis, Nick and Ocloo, Josephine", title="A Smartphone App Designed to Empower Patients to Contribute Toward Safer Surgical Care: Community-Based Evaluation Using a Participatory Approach", journal="JMIR Mhealth Uhealth", year="2020", month="Jan", day="20", volume="8", number="1", pages="e12859", keywords="patient safety", keywords="surgery", keywords="smartphone", keywords="mobile phone", keywords="patient empowerment", abstract="Background: MySurgery is a smartphone app designed to increase patient and carer involvement in behaviors that contribute toward safety in surgical care. Objective: This study presents a pilot evaluation of MySurgery in which we evaluated surgical patients' perceptions of the app in terms of its content, usability, and potential impacts on communication and safety. Methods: A participatory action research (PAR) approach was used to formulate a research steering group consisting of 5 public representatives and 4 researchers with equal decision-making input. Surgical patients were recruited from the community using multiple approaches, including Web based (eg, social media, recruitment websites, and charitable or voluntary organizations) and face to face (via community centers). Participants referred to MySurgery before, during, and after their surgery and provided feedback via an embedded questionnaire and using reflective notes. Results: A diverse mix of 42 patients took part with good representation from 2 ``seldom heard'' groups: those with a disability and those from a black, Asian, or minority ethnic group. Most were very supportive of MySurgery, particularly those with previous experience of surgery and those who felt comfortable to be involved in conversations and decisions around their care. The app showed particular potential to empower patients to become involved in their care conversations and safety-related behaviors. Perceptions did not differ according to age, ethnicity, or length of hospital stay. Suggestions for improving the app included how to make it more accessible to certain groups, for example, those with a disability. Conclusions: MySurgery is a novel technology-driven approach for empowering patients to play a role in improving surgical safety that seems feasible for use within the United Kingdom's National Health Service. Adopting a PAR approach and the use of a diversity strategy considerably enhanced the research process in terms of gaining diverse participant recruitment and patient and public involvement. Further testing with stakeholder groups will follow. ", doi="10.2196/12859", url="https://mhealth.jmir.org/2020/1/e12859", url="http://www.ncbi.nlm.nih.gov/pubmed/31958067" } @Article{info:doi/10.2196/13337, author="Greysen, Ryan S. and Magan, Yimdriuska and Rosenthal, Jamie and Jacolbia, Ronald and Auerbach, D. Andrew and Harrison, D. James", title="Patient Recommendations to Improve the Implementation of and Engagement With Portals in Acute Care: Hospital-Based Qualitative Study", journal="J Med Internet Res", year="2020", month="Jan", day="14", volume="22", number="1", pages="e13337", keywords="patient portals", keywords="hospitalization", keywords="patient engagement", keywords="qualitative research", abstract="Background: The inclusion of patient portals into electronic health records in the inpatient setting lags behind progress in the outpatient setting. Objective: The aim of this study was to understand patient perceptions of using a portal during an episode of acute care and explore patient-perceived barriers and facilitators to portal use during hospitalization. Methods: We utilized a mixed methods approach to explore patient experiences in using the portal during hospitalization. All patients received a tablet with a brief tutorial, pre- and postuse surveys, and completed in-person semistructured interviews. Qualitative data were coded using thematic analysis to iteratively develop 18 codes that were integrated into 3 themes framed as patient recommendations to hospitals to improve engagement with the portal during acute care. Themes from these qualitative data guided our approach to the analysis of quantitative data. Results: We enrolled 97 participants: 53 (53/97, 55\%) women, 44 (44/97, 45\%) nonwhite with an average age of 48 years (19-81 years), and the average length of hospitalization was 6.4 days. A total of 47 participants (47/97, 48\%) had an active portal account, 59 participants (59/97, 61\%) owned a smartphone, and 79 participants (79/97, 81\%) accessed the internet daily. In total, 3 overarching themes emerged from the qualitative analysis of interviews with these patients during their hospital stay: (1) hospitals should provide both access to a device and bring-your-own-device platform to access the portal; (2) hospitals should provide an orientation both on how to use the device and how to use the portal; and (3) hospitals should ensure portal content is up to date and easy to understand. Conclusions: Patients independently and consistently identified basic needs for device and portal access, education, and usability. Hospitals should prioritize these areas to enable successful implementation of inpatient portals to promote greater patient engagement during acute care. Trial Registration: ClinicalTrials.gov NCT00102401; https://clinicaltrials.gov/ct2/show/NCT01970852 ", doi="10.2196/13337", url="https://www.jmir.org/2020/1/e13337", url="http://www.ncbi.nlm.nih.gov/pubmed/31934868" } @Article{info:doi/10.2196/15148, author="Aoun, Lydia and Lakkis, Najla and Antoun, Jumana", title="Prevalence and Outcomes of Web-Based Health Information Seeking for Acute Symptoms: Cross-Sectional Study", journal="J Med Internet Res", year="2020", month="Jan", day="10", volume="22", number="1", pages="e15148", keywords="internet", keywords="health information", keywords="acute symptoms", keywords="acute disease", abstract="Background: The literature indicates that Web-based health information seeking is mostly used for seeking information on well-established diseases. However, only a few studies report health information seeking in the absence of a doctor's visit and in the context of acute symptoms. Objective: This survey aimed to estimate the prevalence of Web-based health information seeking for acute symptoms and the impact of such information on symptom management and health service utilization. Methods: This was a cross-sectional study of a convenience sample of 287 Lebanese adults (with a response rate of 18.5\% [54/291]) conducted between December 2016 and June 2017. The survey was answered by participants online or through phone-based interviews. Results: A total of 64.3\% of the participants (178/277) reported checking the internet for health information when they had an acute symptom. The rate of those who sought to use Web-based health information first when experiencing acute symptom(s) in the past 12 months was 19.2\% (25/130). In addition, 50\% (9/18) visited the doctor because of the obtained information, and the rest self-medicated or sought a pharmacist's advice; the majority (18/24, 75\%) improved within 3-4 days. Conclusions: Higher education level and trust in Web-based medical information were two major predictors of Web-based health information seeking for acute symptoms. Seeking Web-based health information first for acute symptoms is common and may lead to self-management by avoiding a visit to the physician. Physicians should encourage their patients to discuss Web-based health information and guide them toward trusted online websites. ", doi="10.2196/15148", url="https://www.jmir.org/2020/1/e15148", url="http://www.ncbi.nlm.nih.gov/pubmed/31922490" } @Article{info:doi/10.2196/15585, author="Hah, Hyeyoung", title="Health Consumers' Daily Habit of Internet Banking Use as a Proxy for Understanding Health Information Sharing Behavior: Quasi-Experimental Approach", journal="J Med Internet Res", year="2020", month="Jan", day="8", volume="22", number="1", pages="e15585", keywords="habits", keywords="personal health information", keywords="information sharing", keywords="propensity score", keywords="average treatment effect", keywords="internet banking", keywords="observational data", keywords="quasi-experimental design", abstract="Background: As the US health care system is embracing data-driven care, personal health information (PHI) has become a valuable resource for various health care stakeholders. In particularly, health consumers are expected to autonomously manage and share PHI with their health care partners. To date, there have been mixed views on the factors influencing individuals' health data--sharing behaviors. Objective: This study aimed to identify a key factor to better understand health information sharing behavior from a health consumer's perspective. We focused on daily settings, wherein health data--sharing behavior becomes a part of individuals' daily information management activities. Considering the similarity between health and finance information management, we explicitly examined whether health consumers' daily habit of similar data sharing from the financial domain affects their PHI-sharing behaviors in various scenarios. Methods: A Web-based survey was administered to US health consumers who have access to and experience in using the internet. We collected individual health consumers' intention to share PHI under varying contexts, habit of financial information management (operationalized as internet banking [IB] use in this paper), and the demographic information from the cross-sectional Web-based survey. To isolate the effect of daily IB on PHI-sharing behaviors in everyday contexts, propensity score matching was used to estimate the average treatment effect (ATE) and average treatment effect on the treated (ATET) regarding IB use. We balanced the treatment and control groups using caliper matching based on the observed confounding variables (ie, gender, income, health status, and access to primary care provider), all of which resulted in a minimal level of bias between unmatched and matched samples (bias <5\%). Results: A total of 339 responses were obtained from a cross-sectional Web-based survey. The ATET results showed that in terms of sharing contents, those who used IB daily were more likely to share general information (P=.01), current information (P=.003), and entire data (P=.04). Regarding occasions for sharing occasions, IB users were prone to share their information in all cases (P=.02). With regard to sharing recipients, daily IB users were more willing to share their personal health data with stakeholders who were not directly involved in their care, such as health administrators (P=.05). These results were qualitatively similar to the ATE results. Conclusions: This study examined whether daily management of similar information (ie, personal financial information) changes health consumers' PHI-sharing behavior under varying sharing conditions. We demonstrated that daily financial information management can encourage health information sharing to a much broader extent, in several instances, and with many stakeholders. We call for more attention to this unobserved daily habit driven by the use of various nonhealth technologies, all of which can implicitly affect patterns and the extent of individuals' PHI-sharing behaviors. ", doi="10.2196/15585", url="https://www.jmir.org/2020/1/e15585", url="http://www.ncbi.nlm.nih.gov/pubmed/31913129" } @Article{info:doi/10.2196/15132, author="Brochu, Felicia and Robins, Stephanie and Miner, A. Skye and Grunberg, H. Paul and Chan, Peter and Lo, Kirk and Holzer, G. Hananel E. and Mahutte, Neal and Ouhilal, Sophia and Tulandi, Togas and Zelkowitz, Phyllis", title="Searching the Internet for Infertility Information: A Survey of Patient Needs and Preferences", journal="J Med Internet Res", year="2019", month="Dec", day="12", volume="21", number="12", pages="e15132", keywords="infertility", keywords="internet", keywords="consumer health information", keywords="patient satisfaction", keywords="stress, psychological", abstract="Background: Given the complexity of infertility diagnoses and treatments and the convenience of the internet for finding health-related information, people undergoing infertility treatments often use Web-based resources to obtain infertility information and support. However, little is known about the types of information and support resources infertility patients search for on the internet and whether these resources meet their needs. Objective: The aims of this study were to (1) examine what individual factors, namely, demographic characteristics and distress, are associated with searching the internet for different types of infertility-related information and support resources and (2) determine whether Web-based resources meet the needs of patients. Methods: Men and women seeking infertility care responded to a survey assessing use of Web-based resources for accessing infertility-related information and support. The survey further assessed satisfaction with Web-based resources as well as perceived stress and depressive symptomatology. Results: A total of 567 participants, including 254 men and 313 women, completed the survey. Most participants (490/558, 87.8\%) had searched the internet for infertility information and support. Searchers were more likely to be women (P<.001), highly educated (P=.04), long-term patients (P=.03), and more distressed (P=.04). Causes of infertility, treatment options, and scientific literature about infertility were the three most frequently searched topics, whereas ways to discuss treatment with family and friends as well as surrogacy and ways to find peer support were the three least searched topics. Of those who searched the internet, 70.9\% (346/488) indicated that their needs were met by Web-based information, whereas 29.1\% (142/488) said that their needs were not met. Having unmet needs was related to greater levels of perceived stress (P=.005) and depressive symptomatology (P=.03). Conclusions: This study provides evidence for the important role of the internet in accessing infertility information and support and for the ability of Web-based resources to meet patients' needs. However, although distressed patients reported particularly high rates of searching, their needs were not always met, suggesting that they may benefit from alternative sources of information and support or guidance from health care providers when searching the internet. ", doi="10.2196/15132", url="https://www.jmir.org/2019/12/e15132", url="http://www.ncbi.nlm.nih.gov/pubmed/31829963" } @Article{info:doi/10.2196/16368, author="deBronkart, Dave", title="Open Access as a Revolution: Knowledge Alters Power", journal="J Med Internet Res", year="2019", month="Dec", day="11", volume="21", number="12", pages="e16368", keywords="patient engagement", keywords="empowerment", keywords="patient empowerment", keywords="participatory medicine", keywords="open access", keywords="patient portals", keywords="EMRs", keywords="EHRs", keywords="Patient-clinician relationship", doi="10.2196/16368", url="http://www.jmir.org/2019/12/e16368/", url="http://www.ncbi.nlm.nih.gov/pubmed/31825321" } @Article{info:doi/10.2196/15381, author="Martin-Hammond, Aqueasha and Vemireddy, Sravani and Rao, Kartik", title="Exploring Older Adults' Beliefs About the Use of Intelligent Assistants for Consumer Health Information Management: A Participatory Design Study", journal="JMIR Aging", year="2019", month="Dec", day="11", volume="2", number="2", pages="e15381", keywords="intelligent assistants", keywords="artificial intelligence", keywords="chatbots", keywords="conversational agents", keywords="digital health", keywords="elderly", keywords="aging in place", keywords="participatory design", keywords="co-design", keywords="health information seeking", abstract="Background: Intelligent assistants (IAs), also known as intelligent agents, use artificial intelligence to help users achieve a goal or complete a task. IAs represent a potential solution for providing older adults with individualized assistance at home, for example, to reduce social isolation, serve as memory aids, or help with disease management. However, to design IAs for health that are beneficial and accepted by older adults, it is important to understand their beliefs about IAs, how they would like to interact with IAs for consumer health, and how they desire to integrate IAs into their homes. Objective: We explore older adults' mental models and beliefs about IAs, the tasks they want IAs to support, and how they would like to interact with IAs for consumer health. For the purpose of this study, we focus on IAs in the context of consumer health information management and search. Methods: We present findings from an exploratory, qualitative study that investigated older adults' perspectives of IAs that aid with consumer health information search and management tasks. Eighteen older adults participated in a multiphase, participatory design workshop in which we engaged them in discussion, brainstorming, and design activities that helped us identify their current challenges managing and finding health information at home. We also explored their beliefs and ideas for an IA to assist them with consumer health tasks. We used participatory design activities to identify areas in which they felt IAs might be useful, but also to uncover the reasoning behind the ideas they presented. Discussions were audio-recorded and later transcribed. We compiled design artifacts collected during the study to supplement researcher transcripts and notes. Thematic analysis was used to analyze data. Results: We found that participants saw IAs as potentially useful for providing recommendations, facilitating collaboration between themselves and other caregivers, and for alerts of serious illness. However, they also desired familiar and natural interactions with IAs (eg, using voice) that could, if need be, provide fluid and unconstrained interactions, reason about their symptoms, and provide information or advice. Other participants discussed the need for flexible IAs that could be used by those with low technical resources or skills. Conclusions: From our findings, we present a discussion of three key components of participants' mental models, including the people, behaviors, and interactions they described that were important for IAs for consumer health information management and seeking. We then discuss the role of access, transparency, caregivers, and autonomy in design for addressing participants' concerns about privacy and trust as well as its role in assisting others that may interact with an IA on the older adults' behalf. International Registered Report Identifier (IRRID): RR2-10.1145/3240925.3240972 ", doi="10.2196/15381", url="http://aging.jmir.org/2019/2/e15381/", url="http://www.ncbi.nlm.nih.gov/pubmed/31825322" } @Article{info:doi/10.2196/13472, author="Safi, Sabur and Danzer, Gerhard and Schmailzl, JG Kurt", title="Empirical Research on Acceptance of Digital Technologies in Medicine Among Patients and Healthy Users: Questionnaire Study", journal="JMIR Hum Factors", year="2019", month="Nov", day="29", volume="6", number="4", pages="e13472", keywords="innovative health care applications", keywords="e-Health", keywords="Technology Acceptance Model", keywords="health care innovation", keywords="electronic medical records", keywords="ePatient Survey", keywords="sex differences", keywords="medical technology", abstract="Background: In recent years, interest in digital technologies such as electronic health, mobile health, telemedicine, big data, and health apps has been increasing in the health care sector. Acceptance and sustainability of these technologies play a considerable role for innovative health care apps. Objective: This study aimed to identify the spread of and experience with new digital technologies in the medical sector in Germany. Methods: We analyzed the acceptance of new health care technologies by applying the Technology Acceptance Model to data obtained in the German ePatient Survey 2018. This survey used standardized questionnaires to gain insight into the prevalence, impact, and development of digital health applications in a study sample of 9621 patients with acute and chronic conditions and healthy users. We extracted sociodemographic data and details on the different health app types used in Germany and conducted an evaluation based on the Technology Acceptance Model. Results: The average age of the respondents was 59.7 years, with a standard deviation of 16 years. Digital health care apps were generally accepted, but differences were observed among age groups and genders of the respondents. Men were more likely to accept digital technologies, while women preferred coaching and consultation apps. Analysis of the user typology revealed that most users were patients (n=4041, 42\%), followed by patients with acute conditions (n=3175, 33\%), and healthy users (n=2405, 25\%). The majority (n=6542, 68\%) discovered coaching or medication apps themselves on the internet, while more than half of the users faced initial difficulties operating such apps. The time of use of the same app or program ranged from a few days (n=1607, 37\%) and several months (n=1694, 39\%) to ?1 year (n=1042, 24\%). Most respondents (n=6927, 72\%) stated that they would like to receive customized health care apps from their physician. Conclusions: The acceptance of digital technologies in the German health care sector varies depending on age and gender. The broad acceptance of medical digital apps could potentially improve individualized health care solutions and warrants governance. ", doi="10.2196/13472", url="http://humanfactors.jmir.org/2019/4/e13472/", url="http://www.ncbi.nlm.nih.gov/pubmed/31782741" } @Article{info:doi/10.2196/14537, author="Karampela, Maria and Ouhbi, Sofia and Isomursu, Minna", title="Connected Health User Willingness to Share Personal Health Data: Questionnaire Study", journal="J Med Internet Res", year="2019", month="Nov", day="27", volume="21", number="11", pages="e14537", keywords="connected health", keywords="personal health data", keywords="data sharing", keywords="questionnaire", abstract="Background: Connected health has created opportunities for leveraging health data to deliver preventive and personalized health care services. The increasing number of personal devices and advances in measurement technologies contribute to an exponential growth in digital health data. The practices for sharing data across the health ecosystem are evolving as there are more opportunities for using such data to deliver responsive health services. Objective: The objective of this study was to explore user attitudes toward sharing personal health data (PHD). The study was executed within the first year after the implementation of the new General Data Protection Regulation (GDPR) legal framework. Methods: The authors analyzed the results of an online questionnaire survey to explore the willingness of 8004 people using connected health services across four European countries to share their PHD and the conditions under which they would be willing to do so. Results: Our findings indicate that the majority of users are willing to share their personal PHD for scientific research (1811/8004, 22.63\%). Age, education level, and occupation of the participants, in addition to the level of digitalization in their country were found to be associated with data sharing attitudes. Conclusions: Positive attitudes toward data sharing for scientific research can be perceived as an indication of trust established between users and academia. Nevertheless, the interpretation of data sharing attitudes is a complex process, related to and influenced by various factors. ", doi="10.2196/14537", url="https://www.jmir.org/2019/11/e14537", url="http://www.ncbi.nlm.nih.gov/pubmed/31774410" } @Article{info:doi/10.2196/17045, author="deBronkart, Dave and Eysenbach, Gunther", title="Gimme My Damn Data (and Let Patients Help!): The \#GimmeMyDamnData Manifesto", journal="J Med Internet Res", year="2019", month="Nov", day="22", volume="21", number="11", pages="e17045", keywords="data", keywords="participatory medicine", keywords="ehealth", doi="10.2196/17045", url="http://www.jmir.org/2019/11/e17045/", url="http://www.ncbi.nlm.nih.gov/pubmed/31755873" } @Article{info:doi/10.2196/16359, author="Kukafka, Rita", title="Digital Health Consumers on the Road to the Future", journal="J Med Internet Res", year="2019", month="Nov", day="21", volume="21", number="11", pages="e16359", keywords="digital health", keywords="health consumers", keywords="artificial intelligence", keywords="internet of things", doi="10.2196/16359", url="https://www.jmir.org/2019/11/e16359", url="http://www.ncbi.nlm.nih.gov/pubmed/31750835" } @Article{info:doi/10.2196/15332, author="FitzPatrick, Anne Mary and Hess, Claudia Alexandra and Sudbury-Riley, Lynn and Schulz, Johannes Peter", title="A Typology of Patients Based on Decision-Making Styles: Cross-Sectional Survey Study", journal="J Med Internet Res", year="2019", month="Nov", day="20", volume="21", number="11", pages="e15332", keywords="internet", keywords="online health information", keywords="patient decision making", keywords="patient-practitioner interaction", keywords="patient segments", keywords="patient typology", keywords="baby boomers", keywords="patient education", abstract="Background: Although previous research shows broad differences in the impact of online health information on patient-practitioner decision making, specific research is required to identify and conceptualize patient decision-making styles related to the use of online health information and to differentiate segments according to the influence of online information on patient decision making and interactions with health professionals. Objective: This study aimed to investigate patients' decision making in relation to online health information and interactions with health care practitioners. We also aimed to present a typology of patients based on significant differences in their decision making. Methods: We applied a large-scale cross-sectional research design using a survey. Data, generated using a questionnaire that was administered by companies specializing in providing online panels, were collected from random samples of baby boomers in the United Kingdom, the United States, and New Zealand. The total sample comprised 996 baby boomers born between 1946 and 1964, who had used the internet in the previous 6 months to search for and share health-related information. Data were analyzed using hierarchical cluster analysis and confirmatory factor analysis, as well as one-way analysis of variance, chi-square tests, and paired sample t tests. Results: Analyses identified 3 key decision-making styles that served as the base for 4 unique and stable segments of patients with distinctive decision-making styles: the Collaborators (229/996, 23.0\%), the Autonomous-Collaborators (385/996, 38.7\%), the Assertive-Collaborators (111/996, 11.1\%), and the Passives (271/996, 27.2\%). Profiles were further developed for these segments according to key differences in the online health information behavior, demographics, and interactional behaviors of patients. The typology demonstrates that collaborative decision making is dominant among patients either in its pure form or in combination with autonomous or assertive decision making. In other words, most patients (725/996, 72.8\%) show significant collaboration in their decision making with health care professionals. However, at times, patients in the combination Autonomous-Collaborative segment prefer to exercise individual autonomy in their decision making, and those in the combination Assertive-Collaborative segment prefer to be assertive with health professionals. Finally, this study shows that a substantial number of patients adopt a distinctly passive decision-making style (271/996, 27.2\%). Conclusions: The patient typology provides a framework for distinguishing practice-relevant and addressable segments with important implications for health care practitioners, including better-targeted communication programs for patients and more successful outcomes for health care services in the long term. ", doi="10.2196/15332", url="http://www.jmir.org/2019/11/e15332/", url="http://www.ncbi.nlm.nih.gov/pubmed/31746770" } @Article{info:doi/10.2196/14271, author="Svedberg, Petra and Arvidsson, Susann and Larsson, Ingrid and Carlsson, Ing-Marie and Nygren, M. Jens", title="Barriers and Enablers Affecting Successful Implementation of the Electronic Health Service Sisom: Multicenter Study of Child Participation in Pediatric Care", journal="J Med Internet Res", year="2019", month="Nov", day="15", volume="21", number="11", pages="e14271", keywords="children", keywords="pediatrics", keywords="eHealth", keywords="health care", keywords="quality improvement", keywords="diffusion of innovation", keywords="implementation science", keywords="participatory medicine", abstract="Background: Children's participation in health care is one of the most important components in the management of their disease. Electronic health (eHealth) services that are adapted to the needs of children have the potential for restructuring how children and professionals work together. Therefore, a digital interactive assessment and communication tool, Sisom, was developed to give children aged between 6 and 12 years a voice in their own health care. However, the implementation of eHealth services such as Sisom in daily practice in pediatric health care is rarely investigated. Objective: The aim of this study was to explore the process of implementing Sisom for children in pediatric care in Sweden. More specifically, the study aimed to (1) evaluate whether the implementation strategy was conducted as planned, (2) understand the barriers and facilitators of the implementation strategy in pediatric care settings, (3) gain insight into how professionals work with the specific intervention, and (4) gain insight into the usefulness and effects of the intervention from the professionals' perspectives. Methods: A process evaluation design was used to study the implementation of Sisom at 4 pediatric care centers in Sweden. An extensive amount of qualitative and quantitative data was collected before, during, and after the intervention through self-report checklists, memos, and interviews with professionals. In total, 46 children, aged between 6 and 13 years, participated. The children used Sisom on two occasions during 6 months. When they used Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children, and their parents. Results: To our knowledge, this is the first implementation study of an eHealth communication tool aimed at strengthening children's participation in pediatric health care. Key factors for successful implementation were alignment of the solution with the values and goals of the organization, health care professionals' beliefs in the usefulness and usability of the solution, and health care professionals' willingness to change their professional roles guided by the solution. Conclusions: The results from the study show that it is possible to restructure health care delivery toward a child-centered approach, if there is a willingness and preparedness in the organization to implement an eHealth solution with the aim of restructuring the way of working with children's participation. ", doi="10.2196/14271", url="https://www.jmir.org/2019/11/e14271", url="http://www.ncbi.nlm.nih.gov/pubmed/31730040" } @Article{info:doi/10.2196/14554, author="Vehof, Hans and Heerdink, Eibert and Sanders, Jos{\'e} and Das, Enny", title="Associations Between Characteristics of Web-Based Diabetes News and Readers' Sentiments: Observational Study in the Netherlands", journal="J Med Internet Res", year="2019", month="Nov", day="13", volume="21", number="11", pages="e14554", keywords="medical journalism", keywords="diabetes mellitus", keywords="information seeking behaviors", keywords="news", keywords="diffusion of innovation", abstract="Background: Although experts agree that Web-based health information often contains exaggeration and misrepresentation of science, it is not yet known how this information affects the readers' sentiments. Objective: This study aimed to investigate whether specific aspects of Web-based diabetes research news are associated with positive or negative sentiments in readers. Methods: A retrospective observational study of the comments on diabetes research news posted on Facebook pages was conducted as a function of the innovations' developmental phase, the intended treatment effect, and the use of strong language to intensify the news messages (superlatives). Data for the investigation were drawn from the diabetes research news posted between January 2014 and January 2018 on the two largest Dutch Facebook pages on diabetes and the corresponding reader comments. By manually coding these Facebook user comments, three binary outcome variables were created, reflecting the presence of a positive sentiment, the presence of a negative sentiment, and the presence of a statement expressing hopefulness. Results: Facebook users made a total of 3710 comments on 173 diabetes research news posts that were eligible for further analysis. Facebook user comments on posts about diabetes prevention (odds ratio [OR] 0.55, 95\% CI 0.37-0.84), improved blood glucose regulation (OR 0.68, 95\% CI 0.56-0.84), and symptom relief (OR 0.31, 95\% CI 0.21-0.44) were associated with less positive sentiments as compared with potential diabetes cures. Furthermore, comments on innovations supported by preclinical evidence in animals were associated with more positive sentiments (OR 1.46, 95\% CI 1.07-1.99) and statements expressing hope (OR 1.47, 95\% CI 1.01-2.14), when compared with innovations that have evidence from large human trials. This study found no evidence for the associations between language intensification of the news posts and the readers' sentiments. Conclusions: Our finding that the attitudes toward diabetes research news on Facebook are most positive when clinical efficacy is not (or not yet) proven in large patient trials suggests that news authors and editors, as well as medical professionals, must exercise caution when acting as a conduit for diabetes research news. ", doi="10.2196/14554", url="https://www.jmir.org/2019/11/e14554", url="http://www.ncbi.nlm.nih.gov/pubmed/31719025" } @Article{info:doi/10.2196/13306, author="Shen, Nelson and Sequeira, Lydia and Silver, Pannor Michelle and Carter-Langford, Abigail and Strauss, John and Wiljer, David", title="Patient Privacy Perspectives on Health Information Exchange in a Mental Health Context: Qualitative Study", journal="JMIR Ment Health", year="2019", month="Nov", day="13", volume="6", number="11", pages="e13306", keywords="privacy", keywords="health information exchange", keywords="health information technology", keywords="attitude to health", keywords="trust", abstract="Background: The privacy of patients with mental health conditions is prominent in health information exchange (HIE) discussions, given that their potentially sensitive personal health information (PHI) may be electronically shared for various health care purposes. Currently, the patient privacy perspective in the mental health context is not well understood because of the paucity of in-depth patient privacy research; however, the evidence suggests that patient privacy perspectives are more nuanced than what has been assumed in the academic and health care community. Objective: This study aimed to generate an understanding on how patients with mental health conditions feel about privacy in the context of HIE in Canada. This study also sought to identify the factors underpinning their privacy perspectives and explored how their perspectives influenced their attitudes toward HIE. Methods: Semistructured interviews were conducted with patients at a Canadian academic hospital for addictions and mental health. Guided by the Antecedent-Privacy Concern-Outcome macro-model, interview transcripts underwent deductive and inductive thematic analyses. Results: We interviewed 14 participants. Their privacy concerns varied, depending on the participant's privacy experiences and health care perceptions. Media reports of privacy breaches and hackers had little impact on participants' privacy concerns because of a fatalistic belief that privacy breaches are a reality in the digital age. Rather, direct observations and experiences with the mistreatment of PHI in health care settings caused concern. Decisions to trust others with PHI depended on past experiences with the individual (or institution) and health care needs. Participants had little knowledge of patient privacy rights and legislation but were willing to participate in HIE because of perceived individual and societal benefits. Conclusions: This study introduces evidence that patients with mental health conditions would support HIE. Participants were pragmatic, supporting HIE because they wanted the best care possible. They also understood that their PHI was critical in supporting the single-payer Canadian health care system. Participant health care experiences informed their privacy perspectives, trust, and PHI sharing attitudes---all accentuating the importance of the patient experience in building trust in HIE. Their lack of knowledge about patient rights and PHI uses highlights the degree of trust they have in the health care system to protect their privacy. These findings suggest that the patient privacy discourse should extend beyond the oft-cited barrier of patient privacy concerns to include discussions about building trust, communicating the benefits of HIE, and improving patient experiences. Although our findings are in the Canadian context, this study highlights the importance of engaging patients in privacy policy discussions, regardless of jurisdiction, to ensure their nuanced perspectives are reflected in policy decisions on their PHI. ", doi="10.2196/13306", url="https://mental.jmir.org/2019/11/e13306", url="http://www.ncbi.nlm.nih.gov/pubmed/31719029" } @Article{info:doi/10.2196/14006, author="Audrain-Pontevia, Anne-Fran{\c{c}}oise and Menvielle, Loick and Ertz, Myriam", title="Effects of Three Antecedents of Patient Compliance for Users of Peer-to-Peer Online Health Communities: Cross-Sectional Study", journal="J Med Internet Res", year="2019", month="Nov", day="11", volume="21", number="11", pages="e14006", keywords="online social networking", keywords="patient empowerment", keywords="patient compliance", keywords="patient satisfaction", keywords="structural equation modeling", abstract="Background: Over the past 50 years, patient noncompliance has appeared as a major public health concern and focus of a great deal of research because it endangers patient recovery and imposes a considerable financial burden on health care systems. Meanwhile, online health communities (OHCs) are becoming more common and are commonly used by individuals with health problems, and they may have a role in facilitating compliance. Despite this growing popularity, little is known about patient compliance predictors for OHCs' users. Objective: This study aimed to investigate the extent to which participating in OHCs may trigger higher levels of compliance. It identified 3 interrelated predictors that may affect patient compliance: patient empowerment gained through peer-to-peer OHCs, satisfaction with the physician, and commitment to the physician. Methods: A Web-based survey tested the conceptual model and assessed the effects of patient empowerment gained through OHCs on patient satisfaction and commitment to the physician, as well as the effects of these 3 predictors on patient compliance with the proposed treatment. Members of peer-to-peer OHCs were asked to answer an online questionnaire. A convenience sample of 420 patients experiencing chronic illness and using peer-to-peer OHCs was surveyed in August 2018 in Qu{\'e}bec, Canada. A path analysis using structural equation modeling tested the proposed relationships between the predictors and their respective paths on patient compliance. The mediation effects of these predictor variables on patient compliance were estimated with the PROCESS macro in SPSS. Results: The findings indicated that patient empowerment gained through OHCs was positively related to patient commitment to the physician (beta=.69; P<.001) and patient compliance with the proposed treatment (beta=.35; P<.001). Patient commitment also positively influenced patient compliance (beta=.74; P<.001). Patient empowerment did not exert a significant influence on patient satisfaction with the physician (beta=.02; P=.76), and satisfaction did not affect compliance (beta=?.07; P=.05); however, patient satisfaction was positively related to patient commitment to the physician (beta=.14; P<.01). The impact of empowerment on compliance was partially mediated by commitment to the physician (beta=.32; 95\% CI 0.22-0.44) but not by satisfaction. Conclusions: This study highlights the importance of peer-to-peer OHCs for two main reasons. The primary reason is that patient empowerment gained through peer-to-peer OHCs both directly and indirectly enhances patient compliance with the proposed treatment. The underlying mechanisms of these effects were shown. Second, commitment to the physician was found to play a more critical role than satisfaction with the physician in determining patient-physician relationship quality. Overall, our findings support the assumption that health care stakeholders should encourage the use of peer-to-peer OHCs to favor patient empowerment and patient commitment to the physician to increase patient compliance with the proposed treatment. ", doi="10.2196/14006", url="https://www.jmir.org/2019/11/e14006", url="http://www.ncbi.nlm.nih.gov/pubmed/31710295" } @Article{info:doi/10.2196/16690, author="Kushniruk, Andre", title="The Importance of Health Information on the Internet: How It Saved My Life and How it Can Save Yours", journal="J Med Internet Res", year="2019", month="Oct", day="27", volume="21", number="10", pages="e16690", keywords="patient journey", keywords="human factors", keywords="consumer health informatics", keywords="eHealth", keywords="digital health", keywords="participatory medicine", keywords="shared decision-making", keywords="cancer information", keywords="tongue cancer", doi="10.2196/16690", url="http://www.jmir.org/2019/10/e16690/", url="http://www.ncbi.nlm.nih.gov/pubmed/31661084" } @Article{info:doi/10.2196/14407, author="Nguyen, Hao Minh and Smets, A. Ellen M. and Bol, Nadine and Loos, F. Eug{\`e}ne and van Laarhoven, M. Hanneke W. and Geijsen, Debby and van Berge Henegouwen, I. Mark and Tytgat, J. Kristien M. A. and van Weert, M. Julia C.", title="Tailored Web-Based Information for Younger and Older Patients with Cancer: Randomized Controlled Trial of a Preparatory Educational Intervention on Patient Outcomes", journal="J Med Internet Res", year="2019", month="Oct", day="1", volume="21", number="10", pages="e14407", keywords="Web-based tailoring", keywords="internet", keywords="audiovisual media", keywords="patient education", keywords="cancer", keywords="aging", keywords="memory", keywords="anxiety", keywords="patient reported outcomes", keywords="patient participation", keywords="consultation", keywords="health communication", keywords="randomized controlled trial", abstract="Background: Many patients with cancer, including older patients (aged ?65 years), consult the Web to prepare for their doctor's visit. In particular, older patients have varying needs regarding the mode in which information is presented (eg, via textual, visual, or audiovisual modes) owing to age-related sensory (eg, impaired vision and hearing) and cognitive decline (eg, reduced processing speed). Therefore, Web-based information targeted at older patient populations is likely to be used and processed more effectively, and evaluated more positively, when tailored to age-related capabilities and preferences. This, in turn, may benefit patient outcomes. Objective: This randomized controlled trial tested the effects of a Web-based tailored educational intervention among newly diagnosed younger (<65 years) and older (?65 years) patients with cancer. We compared the intervention group who viewed a mode-tailored website (ie, enabling patients to tailor information using textual, visual, and audiovisual modes) with 3 control groups view a nontailored website (ie, text only, text with images, and text with videos). We examined website experience outcomes (ie, website satisfaction, website involvement, knowledge, anxiety, and communication self-efficacy) and consultation experience outcomes (ie, question asking during consultation, anxiety, and information recall). Methods: Patients from a multidisciplinary outpatient clinic (N=232) viewed a mode-tailored or nontailored website as preparation before their hospital consultations to discuss diagnosis and treatment. Data were collected before (T1), during (T2), and after (T3) visitation. Website experience outcomes were assessed with questionnaires (T1). Patients' question asking was coded from videotaped consultations, and anxiety was assessed through a questionnaire (T2). Telephone interviews were conducted to assess knowledge acquired from the website before (T1) and after consultation (T3), and information recall from the consultation (T3). Results: The preparatory website was well used across all conditions (mean 34 min). Younger patients viewing the mode-tailored website were more satisfied before consultation (P=.02) and reported lower anxiety after consultation (P=.046; vs text only). This pattern was not found in older patients. Mode tailoring yielded no other significant differences in patient outcomes. Regression analyses showed that website involvement (beta=.15; P=.03) and, to a lesser extent, website satisfaction (beta=.15; P=.05) positively associated with knowledge before consultation (T1). In turn, higher knowledge before consultation (beta=.39; P<.001), together with time on the website (beta=.21; P=.002; T1), predicted information recall from consultations (T3). Patients with higher knowledge before consultation (T1) also reported higher knowledge from the website afterward (T3; beta=.22; P=.003). Conclusions: Offering preparatory online information before consultations benefits information processing and patient outcomes of both younger and older newly diagnosed patients with cancer. Younger patients benefit even more when information is offered in a mode-tailored manner. We discuss the theoretical, methodological, and practical implications for patient-provider communication research in an electronic health era. Clinical Trial: Netherlands Trial Register NTR5904; https://www.trialregister.nl/trial/5750 ", doi="10.2196/14407", url="https://www.jmir.org/2019/10/e14407", url="http://www.ncbi.nlm.nih.gov/pubmed/31573911" } @Article{info:doi/10.2196/14056, author="Katapally, Reddy Tarun", title="The SMART Framework: Integration of Citizen Science, Community-Based Participatory Research, and Systems Science for Population Health Science in the Digital Age", journal="JMIR Mhealth Uhealth", year="2019", month="Aug", day="30", volume="7", number="8", pages="e14056", keywords="community-based participatory research", keywords="smartphones", keywords="mobile phones", keywords="population health", keywords="mHealth", keywords="eHealth", keywords="digital health", keywords="big data", keywords="evidence-based framework", keywords="citizen science", keywords="participatory research", keywords="participatory surveillance", keywords="systems science", keywords="ubiquitous tools", doi="10.2196/14056", url="http://mhealth.jmir.org/2019/8/e14056/", url="http://www.ncbi.nlm.nih.gov/pubmed/31471963" } @Article{info:doi/10.2196/13477, author="Costello, E. Ruth and Anand, Amrutha and Jameson Evans, Matt and Dixon, G. William", title="Associations Between Engagement With an Online Health Community and Changes in Patient Activation and Health Care Utilization: Longitudinal Web-Based Survey", journal="J Med Internet Res", year="2019", month="Aug", day="29", volume="21", number="8", pages="e13477", keywords="self-management", keywords="chronic disease", keywords="health information exchanges", keywords="digital health", keywords="peer support", keywords="peer-to-peer support", keywords="online support groups", keywords="internet", abstract="Background: Participation in online health communities (OHCs) is a popular trend in the United Kingdom. However, so far, no evidence exists to indicate an association between participation in OHCs and improved health outcomes. Objective: This study aimed to (1) determine changes in patient activation over 3 months in new users of an OHC, (2) describe patterns of engagement with an OHC, (3) examine whether patients' characteristics at baseline were associated with subsequent patterns of engagement, and (4) determine if patterns of engagement during the 3 months were associated with changes in patient activation, health care utilization, and health status. Methods: Active new OHC users on HealthUnlocked (HU) were surveyed to measure demographics, levels of patient activation (describing a person's confidence in managing their own health; scale 0-100 with 4 categories), health care utilization, and health status using a Web-based survey at baseline and 3 months. Patient activation at baseline and 3 months was compared (aim 1). Alongside, for a sample of HU users and survey responders, daily OHC website usage data were automatically captured. This was used to identify clusters of engagement with HU (aim 2). For survey responders, baseline characteristics, patient activation, health care utilization, and health status were compared at baseline and 3 months, overall, and between engagement clusters using t tests and chi-square tests (aims 3 and 4). Results: In 329 people who completed both surveys, baseline activation was most frequently level 3, described as taking action but still lacking confidence. At follow-up, a change of 2.6 points was seen, with the greatest change seen in those at lowest baseline activation levels. In addition, 4 clusters of engagement were identified: low, medium, high, and very high, who were active on HU for a mean of 4, 12, 29, and 59 days, respectively. Survey responders were more commonly high or very high engagers. Baseline activation was highest in low and very high engagers. Overall activation increased over time in all engagement groups. Very high engagers had the greatest improvement in activation (5 points), although the average change was not above what is considered clinically meaningful for any group. Fewer accident and emergency visits were seen at follow-up in those with higher engagement, although this trend was not seen for other health care utilization measures. There was no change in health status at 3 months. Conclusions: This observational study provides some insight into how patterns of engagement with OHCs are associated with changes in patient activation, health care utilization, and health status. Over 3 months, overall, the change in activation was not clinically significant, and there were some indications that OHCs may be of benefit to particular groups. However, the study limitations prevent firm conclusions about causal relationships. ", doi="10.2196/13477", url="http://www.jmir.org/2019/8/e13477/", url="http://www.ncbi.nlm.nih.gov/pubmed/31469082" } @Article{info:doi/10.2196/14871, author="Gordon, J. William and Bates, W. David and Fuchs, Daniel and Pappas, John and Silacci, Sara and Landman, Adam", title="Comparing Characteristics of Patients Who Connect Their iPhones to an Electronic Health Records System Versus Patients Who Connect Without Personal Devices: Cohort Study", journal="J Med Internet Res", year="2019", month="Aug", day="22", volume="21", number="8", pages="e14871", keywords="health information interoperability", keywords="patient participation", keywords="information technology", keywords="mobile health", abstract="Background: While individual access to health records has traditionally been through paper and other physical media, there has been a recent push toward digitizing this process. Direct patient access to health data through application programming interfaces (APIs) is an important part of current United States policy initiatives, and Apple has created the product ``Health Records on iPhone'' to leverage APIs for this purpose. Objective: The objective of this study was to examine the characteristics of patients at our institution who connected their personal iPhone devices to our electronic health records (EHRs) system through ``Health Records on iPhone'', as compared to patients at our institution who used our patient portal but did not connect a personal device to our system. Methods: We examined adult patients at our institution who had authorized an iPhone device to download their health data from the Partners HealthCare EHR via APIs through ``Health Records on iPhone'' from February 18, 2018 (the date this feature was enabled at our health system) until February 17, 2019. We compared these patients to adult patients who used our portal at least once during this period but did not authorize an iPhone device to download their data via APIs. Results: Variables associated with an increased likelihood of using ``Health Records on iPhone'' included male gender (adjusted OR 3.36; 95\% CI 3.11-3.62; P<.001) and younger age, particularly below 50 years of age. With each decade of age over 50, people were less likely to be ``Health Records on iPhone'' product users. Asian patients were more likely to use the product than Caucasian patients (adjusted OR 1.32; 95\% CI 1.16-1.51; P<.001), though there was no significant difference between African Americans and Caucasians (adjusted OR 1.15; 95\% CI 0.94-1.41; P=.17). Patients who resided in higher ZIP code income quartiles were more likely to be users than those in the lowest quartile. Conclusions: Early results from the implementation of patient-facing APIs at a single institution suggest that there are opportunities for expanding these technologies to ensure all patients are aware of, and have access to, their health data on their personal devices. More work is needed on expanding these technologies to different patient populations. ", doi="10.2196/14871", url="http://www.jmir.org/2019/8/e14871/", url="http://www.ncbi.nlm.nih.gov/pubmed/31441430" } @Article{info:doi/10.2196/11998, author="Tatara, Naoe and Hammer, Lewi Hugo and Mirkovic, Jelena and Kj{\o}llesdal, R{\aa}berg Marte Karoline and Andreassen, Kristin Hege", title="Associations Between Immigration-Related User Factors and eHealth Activities for Self-Care: Case of First-Generation Immigrants From Pakistan in the Oslo Area, Norway", journal="JMIR Public Health Surveill", year="2019", month="Aug", day="16", volume="5", number="3", pages="e11998", keywords="immigrants", keywords="type 2 diabetes", keywords="self-care", keywords="information-seeking behavior", keywords="literacy", keywords="language", abstract="Background: Immigrant populations are often disproportionally affected by chronic diseases, such as type 2 diabetes mellitus (T2DM). Use of information and communication technology (ICT) is one promising approach for better self-care of T2DM to mitigate the social health inequalities, if designed for a wider population. However, knowledge is scarce about immigrant populations' diverse electronic health (eHealth) activities for self-care, especially in European countries. Objective: With a target group of first-generation immigrants from Pakistan in the Oslo area, Norway, we aimed to understand their diverse eHealth activities for T2DM self-care in relation to immigration-related user factors specific to this target group: proficiency in relevant languages (Urdu, Norwegian, English), length of residence in Norway, and diagnosis of T2DM compared with general user factors (age, gender, education and digital skills, and self-rated health status). Methods: Data were from a survey among the target population (N=176) conducted in 2015-2016. Using logistic regression, we analyzed associations between user factors and experiences of each of the following eHealth activities for T2DM self-care in the last 12 months: first, information seeking by (1) search engines and (2) Web portals or email subscriptions; second, communication and consultation (1) by closed conversation with a few acquaintances using ICT and (2) on social network services; and third, active decision making by using apps for (1) tracking health information and (2) self-assessment of health status. Using Poisson regression, we also assessed the relationship between user factors and variety of eHealth activities experienced. The Bonferroni correction was used to address the multiple testing problem. Results: Regression analyses yielded the following significantly positive associations: between Urdu literacy and (1) information seeking by Web portals or email subscriptions (odds ratio [OR] 2.155, 95\% CI 1.388-3.344), (2) communication and consultation on social network services (OR 5.697, 95\% CI 2.487-13.053), and (3) variety (estimate=0.350, 95\% CI 0.148-0.552); between length of residence in Norway and (1) communication and consultation by closed conversation with a few acquaintances using ICT (OR 1.728, 95\% CI 1.193-2.503), (2) communication and consultation on social network services (OR 2.098, 95\% CI 1.265-3.480), and (3) variety (estimate=0.270, 95\% CI 0.117-0.424); between Norwegian language proficiency and active decision making by using apps for self-assessment of health status (OR 2.285, 95\% CI 1.294-4.036); between education and digital skills and active decision making by using apps for tracking health information (OR 3.930, 95\% CI 1.627-9.492); and between being a female and communication and consultation by closed conversation with a few acquaintances using ICT (OR 2.883, 95\% CI 1.335-6.227). Conclusions: This study implies immigration-related factors may confound associations between general user factors and eHealth activities. Further studies are needed to explore the influence of immigration-related user factors for eHealth activities in other immigrant groups and countries. International Registered Report: RR2-DOI 10.2196/resprot.5468 ", doi="10.2196/11998", url="http://publichealth.jmir.org/2019/3/e11998/", url="http://www.ncbi.nlm.nih.gov/pubmed/31420957" } @Article{info:doi/10.2196/13022, author="Scott Duncan, Therese and Riggare, Sara and Koch, Sabine and Sharp, Lena and H{\"a}gglund, Maria", title="From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients", journal="J Med Internet Res", year="2019", month="Aug", day="15", volume="21", number="8", pages="e13022", keywords="consumer health informatics", keywords="eHealth", keywords="qualitative research", keywords="self-care", keywords="motivation", abstract="Background: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. Objective: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. Methods: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory---autonomy, relatedness, and competence---at the outset. Results: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. Conclusions: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances. ", doi="10.2196/13022", url="http://www.jmir.org/2019/8/e13022/", url="http://www.ncbi.nlm.nih.gov/pubmed/31418421" } @Article{info:doi/10.2196/14634, author="Liu, Jing and Hou, Shengchao and Evans, Richard and Xia, Chenxi and Xia, Weidong and Ma, Jingdong", title="What Do Patients Complain About Online: A Systematic Review and Taxonomy Framework Based on Patient Centeredness", journal="J Med Internet Res", year="2019", month="Aug", day="07", volume="21", number="8", pages="e14634", keywords="patient-centered care", keywords="delivery of health care", keywords="systematic review", keywords="taxonomy", abstract="Background: Complaints made online by patients about their health care experiences are becoming prevalent because of widespread worldwide internet connectivity. An a priori framework, based on patient centeredness, may be useful in identifying the types of issues patients complain about online across multiple settings. It may also assist in examining whether the determinants of patient-centered care (PCC) mirror the determinants of patient experiences. Objective: The objective of our study was to develop a taxonomy framework for patient complaints online based on patient centeredness and to examine whether the determinants of PCC mirror the determinants of patient experiences. Methods: First, the best fit framework synthesis technique was applied to develop the proposed a priori framework. Second, electronic databases, including Web of Science, Scopus, and PubMed, were searched for articles published between 2000 and June 2018. Studies were only included if they collected primary quantitative data on patients' online complaints. Third, a deductive and inductive thematic analysis approach was adopted to code the themes of recognized complaints into the framework. Results: In total, 17 studies from 5 countries were included in this study. Patient complaint online taxonomies and theme terms varied. According to our framework, patients expressed most dissatisfaction with patient-centered processes (101,586/204,363, 49.71\%), followed by prerequisites (appropriate skills and knowledge of physicians; 50,563, 24.74\%) and the care environment (48,563/204,363, 23.76\%). The least dissatisfied theme was expected outcomes (3651/204,363, 1.79\%). People expressed little dissatisfaction with expanded PCC dimensions, such as involvement of family and friends (591/204,363, 0.29\%). Variation in the concerns across different countries' patients were also observed. Conclusions: Online complaints made by patients are of major value to health care providers, regulatory bodies, and patients themselves. Our PCC framework can be applied to analyze them under a wide range of conditions, treatments, and countries. This review has shown significant heterogeneity of patients' online complaints across different countries. ", doi="10.2196/14634", url="https://www.jmir.org/2019/8/e14634/", url="http://www.ncbi.nlm.nih.gov/pubmed/31392961" } @Article{info:doi/10.2196/12483, author="Meeker, Daniella and Goldberg, Jordan and Kim, K. Katherine and Peneva, Desi and Campos, Oliveira Hugo De and Maclean, Ross and Selby, Van and Doctor, N. Jason", title="Patient Commitment to Health (PACT-Health) in the Heart Failure Population: A Focus Group Study of an Active Communication Framework for Patient-Centered Health Behavior Change", journal="J Med Internet Res", year="2019", month="Aug", day="06", volume="21", number="8", pages="e12483", keywords="heart failure", keywords="behavioral economics", keywords="motivational interviewing", abstract="Background: Over 6 million Americans have heart failure, and 1 in 8 deaths included heart failure as a contributing cause in 2016. Lifestyle changes and adherence to diet and exercise regimens are important in limiting disease progression. Health coaching and public commitment are two interactive communication strategies that may improve self-management of heart failure. Objective: This study aimed to conduct patient focus groups to gain insight into how best to implement health coaching and public commitment strategies within the heart failure population. Methods: Focus groups were conducted in two locations. We studied 2 patients in Oakland, California, and 5 patients in Los Angeles, California. Patients were referred by local cardiologists and had to have a diagnosis of chronic heart failure. We used a semistructured interview tool to explore several patient-centered themes including medication adherence, exercise habits, dietary habits, goals, accountability, and rewards. We coded focus group data using the a priori coding criteria for these domains. Results: Medication adherence barriers included regimen complexity, forgetfulness, and difficulty coping with side effects. Participants reported that they receive little instruction from care providers on appropriate exercise and dietary habits. They also reported personal and social obstacles to achieving these objectives. Participants were in favor of structured goal setting, use of online social networks, and financial rewards as a means of promoting health lifestyles. Peers were viewed as better motivating agents than family members. Conclusions: An active communication framework involving dissemination of diet- and exercise-related health information, structured goal setting, peer accountability, and financial rewards appears promising in the management of heart failure. ", doi="10.2196/12483", url="http://www.jmir.org/2019/8/e12483/", url="http://www.ncbi.nlm.nih.gov/pubmed/31389339" } @Article{info:doi/10.2196/12373, author="Abd-Alrazaq, Alaa and Bewick, M. Bridgette and Farragher, Tracey and Gardner, Peter", title="Factors Affecting Patients' Use of Electronic Personal Health Records in England: Cross-Sectional Study", journal="J Med Internet Res", year="2019", month="Jul", day="31", volume="21", number="7", pages="e12373", keywords="health records, personal", keywords="patient portal", keywords="electronic personal health records", keywords="technology acceptance", keywords="technology adoption", keywords="intention", keywords="unified theory of acceptance and use of technology", keywords="structural equation modelling", abstract="Background: Electronic personal health records (ePHRs) are secure Web-based tools that enable individuals to access, manage, and share their medical records. England recently introduced a nationwide ePHR called Patient Online. As with ePHRs in other countries, adoption rates of Patient Online remain low. Understanding factors affecting patients' ePHR use is important to increase adoption rates and improve the implementation success of ePHRs. Objective: This study aimed to examine factors associated with patients' use of ePHRs in England. Methods: The unified theory of acceptance and use of technology was adapted to the use of ePHRs. To empirically examine the adapted model, a cross-sectional survey of a convenience sample was carried out in 4 general practices in West Yorkshire, England. Factors associated with the use of ePHRs were explored using structural equation modeling. Results: Of 800 eligible patients invited to take part in the survey, 624 (78.0\%) returned a valid questionnaire. Behavioral intention (BI) was significantly influenced by performance expectancy (PE; beta=.57, P<.001), effort expectancy (EE; beta=.16, P<.001), and perceived privacy and security (PPS; beta=.24, P<.001). The path from social influence to BI was not significant (beta=.03, P=.18). Facilitating conditions (FC) and BI significantly influenced use behavior (UB; beta=.25, P<.001 and beta=.53, P<.001, respectively). PE significantly mediated the effect of EE and PPS on BI (beta=.19, P<.001 and beta=.28, P=.001, respectively). Age significantly moderated 3 paths: PE{\textrightarrow}BI, EE{\textrightarrow}BI, and FC{\textrightarrow}UB. Sex significantly moderated only the relationship between PE and BI. A total of 2 paths were significantly moderated by education and internet access: EE{\textrightarrow}BI and FC{\textrightarrow}UB. Income moderated the relationship between FC and UB. The adapted model accounted for 51\% of the variance in PE, 76\% of the variance in BI, and 48\% of the variance in UB. Conclusions: This study identified the main factors that affect patients' use of ePHRs in England, which should be taken into account for the successful implementation of these systems. For example, developers of ePHRs should involve patients in the process of designing the system to consider functions and features that fit patients' preferences and skills to ensure systems are useful and easy to use. The proposed model accounted for 48\% of the variance in UB, indicating the existence of other, as yet unidentified, factors that influence the adoption of ePHRs. Future studies should confirm the effect of the factors included in this model and identify additional factors. ", doi="10.2196/12373", url="http://www.jmir.org/2019/7/e12373/", url="http://www.ncbi.nlm.nih.gov/pubmed/31368442" } @Article{info:doi/10.2196/13521, author="Allemann, Hanna and Thyl{\'e}n, Ingela and {\AA}gren, Susanna and Liljeroos, Maria and Str{\"o}mberg, Anna", title="Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure: Qualitative Study", journal="J Med Internet Res", year="2019", month="Jul", day="16", volume="21", number="7", pages="e13521", keywords="family", keywords="caregivers", keywords="telemedicine", keywords="perception", keywords="heart failure", keywords="social support", keywords="focus groups", keywords="qualitative research", abstract="Background: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them. Objective: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF. Methods: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis. Results: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future. Conclusions: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice. ", doi="10.2196/13521", url="http://www.jmir.org/2019/7/e13521/", url="http://www.ncbi.nlm.nih.gov/pubmed/31313662" } @Article{info:doi/10.2196/13800, author="Seidman, Joshua and Masi, Domitilla and Gomez-Rexrode, Elvira Amalia", title="Personalizing Value in Cancer Care: The Case for Incorporating Patient Preferences Into Routine Clinical Decision Making", journal="J Participat Med", year="2019", month="Jul", day="10", volume="11", number="3", pages="e13800", keywords="shared decision making", keywords="patient preference", keywords="health care", keywords="neoplasms", doi="10.2196/13800", url="http://jopm.jmir.org/2019/3/e13800/" } @Article{info:doi/10.2196/14289, author="Moon, Y. Rachel and Mathews, Anita and Oden, Rosalind and Carlin, Rebecca", title="Mothers' Perceptions of the Internet and Social Media as Sources of Parenting and Health Information: Qualitative Study", journal="J Med Internet Res", year="2019", month="Jul", day="09", volume="21", number="7", pages="e14289", keywords="internet", keywords="parenting", keywords="social media", keywords="focus groups", abstract="Background: Traditionally, guidance and support to new parents have come from family, friends, and health care providers. However, the internet and social media are growing sources of guidance and support for parents. Little is known about how the internet and social media are used by parents of young infants and specifically about parental perceptions of the internet and social media as sources of parenting and infant health information. Objective: The aim of this study was to explore, using qualitative methods, parental perceptions of the advantages and disadvantages of the internet and social media as sources of parenting and health information regarding their infant. Methods: A total of 28 mothers participated in focus groups or individual interviews. Probing questions concerning parenting and health information sources were asked. Themes were developed in an iterative manner from coded data. Results: The central themes were (1) reasons that mothers turn to the internet for parenting and health information, (2) cautionary advice about the internet, and (3) reasons that mothers turn to social media for parenting and health information. Mothers appreciated the ability to gather unlimited information and multiple opinions quickly and anonymously, but recognized the need to use reputable sources of information. Mothers also appreciated the immediacy of affirmation, support, and tailored information available through social media. Conclusions: The internet and social media are rapidly becoming important and trusted sources of parenting and health information that mothers turn to when making infant care decisions. ", doi="10.2196/14289", url="https://www.jmir.org/2019/7/e14289/", url="http://www.ncbi.nlm.nih.gov/pubmed/31290403" } @Article{info:doi/10.2196/11340, author="Wiegers, Agnes Therese and Hendriks, Michelle and Malanda, Uri{\"e}ll and de Boer, Dolf", title="Users' Experiences With Web-Based Health Care Information: Qualitative Study About Diabetes and Dementia Information Presented on a Governmental Website", journal="J Med Internet Res", year="2019", month="Jul", day="08", volume="21", number="7", pages="e11340", keywords="patients", keywords="qualitative research", keywords="choice behavior", abstract="Background: Information on health and health care is abundant on the internet. To make informed choices, patients need reliable and easy-to-understand information about quality and availability of care providers and treatment options. However, the reliability of such Web-based information is difficult to assess. Objective: This study aimed to test Web-based information about diabetes and dementia and specifically a new presentation format of care routes to see if people are able to understand and use the information. Methods: Overall, 38 cognitive interviews were held; 20 people viewed the information about diabetes and 18 viewed the dementia information. Participants were asked what they would want to know about either diabetes or dementia, what choices they would want to make concerning their preferred care provider and treatment, and what information they would like to find to make these choices. They were then asked to view the relevant pages and comment on them. The interview was focused on general information about the condition, the care route, and the quality information for choosing a hospital. The interviews were transcribed verbatim and then systematically coded and ordered into themes. Results: The themes that were developed for both Web pages during the analysis were information needs, findability, usability, comprehension and readability, recognizability, care route, quality information, and usefulness. Information needs were found to be very diverse and dependent on the personal situation and condition of the participant. Several participants were unable to find specific items because they were not where they expected them to be. Most participants were positive about the layout, font, and color scheme of the test pages. However, options of clicking through to another website and indications where information can be expanded and collapsed could be made clearer. Participants generally found the information easy to understand but felt a need for a more detailed explanation of the medical terms. Recognition of the information played an important role: participants assessed whether the information they found matched their experiences. The term care route meant little to most of the participants, but the layout of the care route itself was found to be clear. Not many respondents spontaneously went to the quality information, and a number of participants had difficulty understanding it. Overall, the participants thought the information on the website was useful and helpful. Conclusions: The cognitive interviews gave numerous insights into how Web-based information is processed and understood. The care route offers a clear overview of the various stages as the condition progresses, but the name care route is not clear to everyone. We gained insight into differences between subgroups of people in terms of information needs, comprehension, and use of the information because the diversity within the group of participants was lower than expected. ", doi="10.2196/11340", url="https://www.jmir.org/2019/7/e11340/", url="http://www.ncbi.nlm.nih.gov/pubmed/31287066" } @Article{info:doi/10.2196/13512, author="Langford, Aisha and Loeb, Stacy", title="Perceived Patient-Provider Communication Quality and Sociodemographic Factors Associated With Watching Health-Related Videos on YouTube: A Cross-Sectional Analysis", journal="J Med Internet Res", year="2019", month="May", day="17", volume="21", number="5", pages="e13512", keywords="social media", keywords="communication", keywords="health communication", keywords="ethnic groups", keywords="physician-patient relations", keywords="emotions", keywords="attention", keywords="cross-sectional studies", keywords="logistic models", keywords="HINTS", abstract="Background: Approximately 73\% of US adults use YouTube, making it the most popular social media platform. Misinformation on social media is a growing concern; recent studies show a high proportion of misinformative health-related videos. Several studies on patient-provider communication and general health information seeking have been conducted. However, few studies to date have examined the potential association between patient-provider communication and health information seeking on specific social media platforms such as YouTube. A better understanding of this relationship may inform future health communication interventions. Objective: The aim was to use nationally representative cross-sectional data to describe the association between perceived patient-provider communication quality and sociodemographic factors on watching YouTube health-related videos. Methods: Data from the 2018 Health Information National Trends Survey were analyzed (N=3504). The primary outcome was whether participants watched a health-related video on YouTube over the past 12 months. A patient-provider communication composite score was created by summing responses about how often providers did the following: (1) gave you the chance to ask all the health-related questions you had, (2) gave attention to your feelings, (3) involved you in health care decisions as much as you wanted, (4) made sure that you understood the things you needed to do to take care of your health, (5) explained things in a way that you could understand, (6) spent enough time with you, and (7) helped you deal with feelings of uncertainty. Sociodemographic factors included age, gender, race/ethnicity, and education. Descriptive statistics and multivariable logistic regression were conducted. Results: Approximately 1067 (35\% weighted prevalence) participants reported watching a health-related video on YouTube. Higher perceived quality of patient-provider communication on the composite score was significantly associated with lower odds of watching health-related videos on YouTube. Regarding sociodemographic factors, increasing age and being a high school graduate (compared with college graduate) were associated with lower odds of watching health-related videos on YouTube; whereas, Hispanic and non-Hispanic Asians were more likely to have watched a health-related video on YouTube. For individual aspects of patient-physician communication, two of seven patient-provider communication variables were significant. Those who reported that providers ``sometimes'' spent enough time with them had higher odds of watching a health-related video on YouTube, compared with those who said providers ``always'' spent enough time with them. Participants reporting that they ``never'' have a chance to ask all their health-related questions also had higher odds of watching health-related videos on YouTube compared with those who reported ``always.'' Conclusions: Higher perceived quality of patient-provider communication is associated with lower odds of watching health-related videos on YouTube. When providers do not spend enough time or give an opportunity to ask questions, patients are more likely to pursue health information on social media. ", doi="10.2196/13512", url="http://www.jmir.org/2019/5/e13512/", url="http://www.ncbi.nlm.nih.gov/pubmed/31102372" } @Article{info:doi/10.2196/12891, author="Lu, Xinyi and Zhang, Runtong", title="Impact of Physician-Patient Communication in Online Health Communities on Patient Compliance: Cross-Sectional Questionnaire Study", journal="J Med Internet Res", year="2019", month="May", day="13", volume="21", number="5", pages="e12891", keywords="patient portals", keywords="communication", keywords="patient compliance", keywords="consumer health information", keywords="decision making", keywords="physician-patient relations", keywords="personal autonomy", abstract="Background: In China, the utilization of medical resources is tense, and most hospitals are highly congested because of the large population and uneven distribution of medical resources. Online health communities (OHCs) play an important role in alleviating hospital congestions, thereby improving the utilization of medical resources and relieving medical resource shortages. OHCs have positive effects on physician-patient relationships and health outcomes. Moreover, as one of the main ways for patients to seek health-related information in OHCs, physician-patient communication may affect patient compliance in various ways. In consideration of the inevitable development of OHCs, although they have several shortcomings, identifying how physician-patient communication can impact patient compliance is important to improve patients' health outcomes through OHCs. Objective: This study aimed to investigate the impact of physician-patient communication on patient compliance in OHCs through the mediation of the perceived quality of internet health information, decision-making preference, and physician-patient concordance, using an empirical study based on the self-determination theory. Methods: A research model was established, including 1 independent variable (physician-patient communication), 3 mediators (perceived quality of internet health information, decision-making preference, and physician-patient concordance), 1 dependent variable (patient compliance), and 4 control variables (age, gender, living area, and education level). Furthermore, a Web-based survey involving 423 valid responses was conducted in China to collect data, and structural equation modeling and partial least squares were adopted to analyze data and test the hypotheses. Results: The questionnaire response rate was 79.2\% (487/615) and the validity rate was 86.9\% (423/487); reliability and validity are acceptable. The communication between physicians and patients in OHCs positively affects patient compliance through the mediation of the perceived quality of internet health information, decision-making preference, and physician-patient concordance. Moreover, physician-patient communication exhibits similar impacts on the perceived quality of internet health information, decision-making preference, and physician-patient concordance. Patients' decision-making preference shows the weakest impact on patient compliance compared with the other 2 mediators. Ultimately, all 3 mediators play a partially mediating role between physician-patient communication and patient compliance. Conclusions: We conclude that physician-patient communication in OHCs exhibits a positive impact on patient compliance; thus, patient compliance can be improved by guiding physician-patient communication in OHCs. Furthermore, our findings suggest that physicians can share high-quality health information with patients, discuss benefits, risks, and costs of treatment options with patients, encourage patients to express their attitudes and participate in health-related decision making, and strengthen the emotional connection with patients in OHCs, thereby decreasing patients' misunderstanding of information and increasing concordance between physicians and patients. OHCs are required to not only strengthen the management of their published health information quality but also understand users' actual attitudes toward information quality and then try to reduce the gap between the perceived and actual quality of information. ", doi="10.2196/12891", url="http://www.jmir.org/2019/5/e12891/", url="http://www.ncbi.nlm.nih.gov/pubmed/31094342" } @Article{info:doi/10.2196/13312, author="Han, Peijin and Nicholson, Wanda and Norton, Anna and Graffeo, Karen and Singerman, Richard and King, Steven and Sundaresan, Aditi and Bennett, Wendy", title="DiabetesSistersVoices: Virtual Patient Community to Identify Research Priorities for Women Living With Diabetes", journal="J Med Internet Res", year="2019", month="May", day="10", volume="21", number="5", pages="e13312", keywords="social media", keywords="online social networking", keywords="women's health", keywords="diabetes mellitus", abstract="Background: Women with or at high risk of diabetes have unique health concerns across their life course. Effective methods are needed to engage women living with diabetes to develop and carry out a patient-centered research agenda. Objective: This study aimed to (1) describe the creation of DiabetesSistersVoices, a virtual patient community for women living with and at risk for diabetes and (2) assess the feasibility and acceptability of DiabetesSistersVoices for engaging women in talking about their experiences, health care, and research priorities. Methods: We partnered with a national advocacy organization to create DiabetesSistersVoices and to develop recruitment strategies, which included use of social media, Web-based newsletters, and weblinks through partnering organizations. Study inclusion criteria were as follows: Being a woman aged ?18 years, residing in the United States, and self-reporting a diagnosis of diabetes or risk of diabetes. Eligible participants were given access to DiabetesSistersVoices and completed online surveys at enrollment and 6 months. We assessed trends in participants' activities, including posting questions, sharing experiences about living with diabetes, and searching for posted resources. Results: We enrolled 332 women (white: 86.5\%; type 1 diabetes: 76.2\%; median age: 51 years [interquartile range: 31 to 59 years]) over 8 months. Most (41.6\%, 138/332) were classified as being active users (ie, posting) of the virtual community, 36.1\% (120/332) as observers (ie, logged in but no posts), and 22.3\% (74/332) as never users (ie, completed baseline surveys but then never logged in). Online activities were constant during the study, although participants had the highest website usage during the first 10 weeks after their enrollment. Conclusions: We demonstrated the feasibility and acceptability of an online patient community for women living with diabetes by showing durability of recruitment and online usage over 6 months of testing. Next steps are to address barriers to joining a virtual patient community for women of color and women with type 2 diabetes to enhance inclusiveness and gain diverse perspectives to inform diabetes research. ", doi="10.2196/13312", url="https://www.jmir.org/2019/5/e13312/", url="http://www.ncbi.nlm.nih.gov/pubmed/31094360" } @Article{info:doi/10.2196/13876, author="Walker, Jan and Leveille, Suzanne and Bell, Sigall and Chimowitz, Hannah and Dong, Zhiyong and Elmore, G. Joann and Fernandez, Leonor and Fossa, Alan and Gerard, Macda and Fitzgerald, Patricia and Harcourt, Kendall and Jackson, Sara and Payne, H. Thomas and Perez, Jocelyn and Shucard, Hannah and Stametz, Rebecca and DesRoches, Catherine and Delbanco, Tom", title="OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes", journal="J Med Internet Res", year="2019", month="May", day="06", volume="21", number="5", pages="e13876", keywords="patient portal", keywords="physician-patient relations", keywords="electronic health record", keywords="health care survey", keywords="patient participation", abstract="Background: Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. Objective: The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. Methods: A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. Results: Among 136,815 patients who received invitations, 21.68\% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82\% (18,081/28,782) were female, 72.90\% (20,982/28,782) were aged 45 years or older, 76.94\% (22,146/28,782) were white, and 14.30\% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74\% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62\%), feeling in control of their care (15,726/22,515, 69.85\%), and remembering the plan of care (14,821/22,516, 65.82\%). Few were very confused (737/22,304, 3.3\%) or more worried (1078/22,303, 4.83\%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46\%) thought Web-based access to visit notes a good idea, and 62.38\% (13,427/21,525) rated this practice as very important for choosing a future provider. Conclusions: In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks. ", doi="10.2196/13876", url="https://www.jmir.org/2019/5/e13876/", url="http://www.ncbi.nlm.nih.gov/pubmed/31066717" } @Article{info:doi/10.2196/11855, author="Pham, My Tra and Abel, A. Gary and Gomez-Cano, Mayam and Lyratzopoulos, Georgios", title="Predictors of Postal or Online Response Mode and Associations With Patient Experience and Satisfaction in the English Cancer Patient Experience Survey", journal="J Med Internet Res", year="2019", month="May", day="02", volume="21", number="5", pages="e11855", keywords="cancer", keywords="patient survey", keywords="satisfaction", keywords="experience", keywords="online response", keywords="Web", keywords="internet", abstract="Background: Patient experience surveys are important tools for improving the quality of cancer services, but the representativeness of responders is a concern. Increasingly, patient surveys that traditionally used postal questionnaires are incorporating an online response option. However, the characteristics and experience ratings of online responders are poorly understood. Objective: We sought to examine predictors of postal or online response mode, and associations with patient experience in the (English) Cancer Patient Experience Survey. Methods: We analyzed data from 71,186 patients with cancer recently treated in National Health Service hospitals who responded to the Cancer Patient Experience Survey 2015. Using logistic regression, we explored patient characteristics associated with greater probability of online response and whether, after adjustment for patient characteristics, the online response was associated with a more or less critical evaluation of cancer care compared to the postal response. Results: Of the 63,134 patients included in the analysis, 4635 (7.34\%) responded online. In an adjusted analysis, male (women vs men: odds ratio [OR] 0.50, 95\% confidence interval [CI] 0.46-0.54), younger (<55 vs 65-74 years: OR 3.49, 95\% CI 3.21-3.80), least deprived (most vs least deprived quintile: OR 0.57, 95\% CI 0.51-0.64), and nonwhite (nonwhite vs white ethnic group: OR 1.37, 95\% CI 1.24-1.51) patients were more likely to respond online. Compared to postal responders, after adjustment for patient characteristics, online responders had a higher likelihood of reporting an overall satisfied experience of care (OR 1.24, 95\% CI 1.16-1.32). For 34 of 49 other items, online responders more frequently reported a less than positive experience of care (8 reached statistical significance), and the associations were positive for the remaining 15 of 49 items (2 reached statistical significance). Conclusions: In the context of a national survey of patients with cancer, online and postal responders tend to differ in their characteristics and rating of satisfaction. Associations between online response and reported experience were generally small and mostly nonsignificant, but with a tendency toward less than positive ratings, although not consistently. Whether the observed associations between response mode and reported experience were causal needs to be examined using experimental survey designs. ", doi="10.2196/11855", url="https://www.jmir.org/2019/5/e11855/", url="http://www.ncbi.nlm.nih.gov/pubmed/31045503" } @Article{info:doi/10.2196/13445, author="Aboueid, Stephanie and Liu, H. Rebecca and Desta, Negussie Binyam and Chaurasia, Ashok and Ebrahim, Shanil", title="The Use of Artificially Intelligent Self-Diagnosing Digital Platforms by the General Public: Scoping Review", journal="JMIR Med Inform", year="2019", month="May", day="01", volume="7", number="2", pages="e13445", keywords="diagnosis", keywords="artificial intelligence", keywords="symptom checkers", keywords="diagnostic self evaluation", keywords="self-care", abstract="Background: Self-diagnosis is the process of diagnosing or identifying a medical condition in oneself. Artificially intelligent digital platforms for self-diagnosis are becoming widely available and are used by the general public; however, little is known about the body of knowledge surrounding this technology. Objective: The objectives of this scoping review were to (1) systematically map the extent and nature of the literature and topic areas pertaining to digital platforms that use computerized algorithms to provide users with a list of potential diagnoses and (2) identify key knowledge gaps. Methods: The following databases were searched: PubMed (Medline), Scopus, Association for Computing Machinery Digital Library, Institute of Electrical and Electronics Engineers, Google Scholar, Open Grey, and ProQuest Dissertations and Theses. The search strategy was developed and refined with the assistance of a librarian and consisted of 3 main concepts: (1) self-diagnosis; (2) digital platforms; and (3) public or patients. The search generated 2536 articles from which 217 were duplicates. Following the Tricco et al 2018 checklist, 2 researchers screened the titles and abstracts (n=2316) and full texts (n=104), independently. A total of 19 articles were included for review, and data were retrieved following a data-charting form that was pretested by the research team. Results: The included articles were mainly conducted in the United States (n=10) or the United Kingdom (n=4). Among the articles, topic areas included accuracy or correspondence with a doctor's diagnosis (n=6), commentaries (n=2), regulation (n=3), sociological (n=2), user experience (n=2), theoretical (n=1), privacy and security (n=1), ethical (n=1), and design (n=1). Individuals who do not have access to health care and perceive to have a stigmatizing condition are more likely to use this technology. The accuracy of this technology varied substantially based on the disease examined and platform used. Women and those with higher education were more likely to choose the right diagnosis out of the potential list of diagnoses. Regulation of this technology is lacking in most parts of the world; however, they are currently under development. Conclusions: There are prominent research gaps in the literature surrounding the use of artificially intelligent self-diagnosing digital platforms. Given the variety of digital platforms and the wide array of diseases they cover, measuring accuracy is cumbersome. More research is needed to understand the user experience and inform regulations. ", doi="10.2196/13445", url="http://medinform.jmir.org/2019/2/e13445/", url="http://www.ncbi.nlm.nih.gov/pubmed/31042151" } @Article{info:doi/10.2196/10830, author="Vizer, M. Lisa and Eschler, Jordan and Koo, Mi Bon and Ralston, James and Pratt, Wanda and Munson, Sean", title="``It's Not Just Technology, It's People'': Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management", journal="J Med Internet Res", year="2019", month="Apr", day="29", volume="21", number="4", pages="e10830", keywords="consumer health informatics", keywords="chronic illness", keywords="patient generated health data", keywords="patient reported outcomes", keywords="workflow", keywords="information seeking behavior", keywords="shared decision making", abstract="Background: For many people, tracking health indicators is central to managing a chronic illness. However, previous informatics research has largely viewed tracking as a solitary process that lacks the characteristics essential to tracking in support of chronic illness management. Objective: To inform development of effective technologies that aid tracking of health indicators to support chronic illness management, this study aimed to construct a health informatics model that accurately describes the work and social context of that tracking work. Methods: As part of a larger project, we conducted semistructured interviews with 40 adults concerning their chronic illness management practices, including tracking and communication. We also assembled transcripts of 30 publicly available videos of 24 adults discussing tracking processes for managing their own chronic illness. We used qualitative methods to analyze interviews and video transcripts through the lens of ongoing personal and health informatics research. Results: We have described the people and work involved in tracking in support of chronic illness management and contributed a Conceptual Model of Shared Health Informatics (CoMSHI). Specifically, we identified the need for a health informatics model that (1) incorporates the ongoing nature of tracking work and (2) represents the social dimension of tracking for illness management. Our model depicts communication, information, collection, integration, reflection, and action work in the social context of the person with chronic illness, informal carers, health care providers, and community members. Conclusions: The resulting CoMSHI yields a more detailed and nuanced viewpoint of tracking in support of chronic illness management and can inform technology design to improve tracking tools to support people in more confident and capable chronic illness management. ", doi="10.2196/10830", url="http://www.jmir.org/2019/4/e10830/", url="http://www.ncbi.nlm.nih.gov/pubmed/31033452" } @Article{info:doi/10.2196/11829, author="Templeton, Michelle and Kelly, Carmel and Lohan, Maria", title="Developing a Sexual Health Promotion Intervention With Young Men in Prisons: A Rights-Based Participatory Approach", journal="JMIR Res Protoc", year="2019", month="Apr", day="29", volume="8", number="4", pages="e11829", keywords="sexual health", keywords="male", keywords="prison", keywords="health promotion", keywords="rights-based participation", abstract="Background: The sexual health of young men in prisons is often among the poorest in any given country. They may have developed sexual behaviors that, from a public health perspective, are considered problematic and burdensome. These include poorer use of condoms and engaging in more frequent casual sex, resulting in higher rates of sexually transmitted infections, including HIV and viral hepatitis. Thus, young incarcerated men are a highly marginalized and socially excluded high-risk group, in greater need of sexual health education and services. Objective: The aim of this study was to create an innovative sexual health promotion intervention, made for and with young men in prisons, to encourage them to avail of regular sexual health checkups. This included developing a Web-based animated-style sexual health promotion intervention (1.42 min) coupled with upskilling the prison nurses to offer a partnership approach to prison health care. This paper focuses on the development of the intervention and the importance of the underpinning rights-based (RB) participatory intervention design. Methods: We employed an RB participatory approach and recruited 14 participants who attended 3 coproduction workshops held within a prison site in Northern Ireland, United Kingdom. A bespoke 3-day training for nurses beforehand, ensured they gained a deeper understanding of the determinants of poor sexual health. The coproduction team comprised young men, prison nurses, nurse sexual health consultant, media company representatives, and facilitator. Workshops focused on content, design, tone and medium of communication for a Web-based intervention that would be appealing and engaging for young incarcerated men. Results: A 1.42-min animation Dick loves Doot was created to promote a positive attitude toward sexual health checkups. The RB approach enabled the young men to participate, have their voices heard and see their stories reflected through the animation. The nurses' capacities to protect, fulfill, and respect the young men's rights to appropriate sexual health services and education was also enhanced. Evaluations confirmed that we successfully provided accurate sexual health information in a way that was engaging and accessible and that encouraged the young men to avail of the new prison sexual health services that were set up in the prison and now provided by nurses. Conclusions: The RB participatory approach to health advanced in this study provided a means to (1) gain invaluable insider knowledge to understand the impact of structural determinants on health and health inequalities and strategies by which to target young incarcerated men (2) create inclusive opportunities for developing bespoke targeted interventions, and (3) galvanize collaborative partnerships to disrupt the structures and processes that lead to and encourage health inequities. To reduce future risk, effective treatment, coupled with coproduced interventions that transmit relevant health messages in a relevant and meaningful way, is key to success. ", doi="10.2196/11829", url="https://www.researchprotocols.org/2019/4/e11829/", url="http://www.ncbi.nlm.nih.gov/pubmed/31033447" } @Article{info:doi/10.2196/13678, author="Hansen, Helen Anne and Claudi, Tor and {\AA}rsand, Eirik", title="Use of Electronic Health and Its Impact on Doctor-Visiting Decisions Among People With Diabetes: Cross-Sectional Study", journal="J Med Internet Res", year="2019", month="Apr", day="26", volume="21", number="4", pages="e13678", keywords="eHealth", keywords="internet", keywords="internet information", keywords="doctor-seeking behavior", keywords="cross-sectional study", keywords="diabetes", keywords="Norway", abstract="Background: Despite the increasing prevalence of diabetes and increasing use of electronic health (eHealth) among people with diabetes, little is known about the association between the use of eHealth and the use of provider-based health services. Objective: The objective of this study was to investigate whether the use of eHealth might change patients' decisions regarding doctor-seeking behavior and whether information acquired from the internet was discussed with a doctor. Methods: We used email survey data collected in 2018 from members of the Norwegian Diabetes Association (aged 18 to 89 years) diagnosed with diabetes. Using logistic regressions, we studied patients' internet-triggered changes in decisions regarding doctor visits; whether they discussed information from the internet with a doctor; and whether these topics were associated with gender, age, education, self-rated health, and self-reported anxiety/depression. Results: Among the 895 informants, 75.4\% (645/856) had never made an internet-triggered change of decision in any direction regarding visiting a doctor, whereas 16.4\% (41/859) had decided to visit and 17.3\% (148/856) had decided not to visit. The probability of changing decisions decreased with higher age and increased with the severity of self-reported anxiety/depression. Around half of the study participants (448/858, 52.2\%) had never discussed information from the internet with a doctor. The probability of discussing internet information with a doctor was higher for those in bad/very bad self-rated health (odds ratio 2.12, CI 1.15-3.90) and for those with moderate self-reported anxiety/depression (odds ratio 2.30, CI 1.30-4.10). Conclusions: Our findings suggest that using eHealth has a significant impact on doctor-visiting decisions among people with diabetes, especially among people aged 18 to 39 years and among those reporting anxiety/depression. It is of great importance that the information posted is of high quality and that the large differences between internet-users regarding age as well as mental and somatic health status are taken into account. More research is needed to confirm and further explore the findings of this study. ", doi="10.2196/13678", url="http://www.jmir.org/2019/4/e13678/", url="http://www.ncbi.nlm.nih.gov/pubmed/31025957" } @Article{info:doi/10.2196/12007, author="Lagu, Tara and Norton, M. Caroline and Russo, M. Lindsey and Priya, Aruna and Goff, L. Sarah and Lindenauer, K. Peter", title="Reporting of Patient Experience Data on Health Systems' Websites and Commercial Physician-Rating Websites: Mixed-Methods Analysis", journal="J Med Internet Res", year="2019", month="Mar", day="27", volume="21", number="3", pages="e12007", keywords="physician reviews", keywords="social networking", keywords="public reporting", abstract="Background: Some hospitals' and health systems' websites report physician-level ratings and comments drawn from the Consumer Assessment of Healthcare Providers and Systems surveys. Objective: The aim was to examine the prevalence and content of health system websites reporting these data and compare narratives from these sites to narratives from commercial physician-rating sites. Methods: We identified health system websites active between June 1 and 30, 2016, that posted clinician reviews. For 140 randomly selected clinicians, we extracted the number of star ratings and narrative comments. We conducted a qualitative analysis of a random sample of these physicians' narrative reviews and compared these to a random sample of reviews from commercial physician-rating websites. We described composite quantitative scores for sampled physicians and compared the frequency of themes between reviews drawn from health systems' and commercial physician-rating websites. Results: We identified 42 health systems that published composite star ratings (42/42, 100\%) or narratives (33/42, 79\%). Most (27/42, 64\%) stated that they excluded narratives deemed offensive. Of 140 clinicians, the majority had composite scores listed (star ratings: 122/140, 87.1\%; narrative reviews: 114/140, 81.4\%), with medians of 110 star ratings (IQR 42-175) and 25.5 (IQR 13-48) narratives. The rating median was 4.8 (IQR 4.7-4.9) out of five stars, and no clinician had a score less than 4.2. Compared to commercial physician-rating websites, we found significantly fewer negative comments on health system websites (35.5\%, 76/214 vs 12.8\%, 72/561, respectively; P<.001). Conclusions: The lack of variation in star ratings on health system sites may make it difficult to differentiate between clinicians. Most health systems report that they remove offensive comments, and we notably found fewer negative comments on health system websites compared to commercial physician-rating sites. ", doi="10.2196/12007", url="http://www.jmir.org/2019/3/e12007/", url="http://www.ncbi.nlm.nih.gov/pubmed/30916654" } @Article{info:doi/10.2196/11366, author="Shaffer, Anne Victoria and Wegier, Pete and Valentine, KD and Belden, L. Jeffery and Canfield, M. Shannon and Patil, J. Sonal and Popescu, Mihail and Steege, M. Linsey and Jain, Akshay and Koopman, J. Richelle", title="Patient Judgments About Hypertension Control: The Role of Variability, Trends, and Outliers in Visualized Blood Pressure Data", journal="J Med Internet Res", year="2019", month="Mar", day="26", volume="21", number="3", pages="e11366", keywords="data visualization", keywords="hypertension", keywords="hypertension control", keywords="patients' judgment", keywords="primary care", abstract="Background: Uncontrolled hypertension is a significant health problem in the United States, even though multiple drugs exist to effectively treat this chronic disease. Objective: As part of a larger project developing data visualizations to support shared decision making about hypertension treatment, we conducted a series of studies to understand how perceptions of hypertension control were impacted by data variations inherent in the visualization of blood pressure (BP) data. Methods: In 3 Web studies, participants (internet sample of patients with hypertension) reviewed a series of vignettes depicting patients with hypertension; each vignette included a graph of a patient's BP. We examined how data visualizations that varied by BP mean and SD (Study 1), the pattern of change over time (Study 2), and the presence of extreme values (Study 3) affected patients' judgments about hypertension control and the need for a medication change. Results: Participants' judgments about hypertension control were significantly influenced by BP mean and SD (Study 1), data trends (whether BP was increasing or decreasing over time---Study 2), and extreme values (ie, outliers---Study 3). Conclusions: Patients' judgment about hypertension control is influenced both by factors that are important predictors of hypertension related-health outcomes (eg, BP mean) and factors that are not (eg, variability and outliers). This study highlights the importance of developing data visualizations that direct attention toward clinically meaningful information. ", doi="10.2196/11366", url="https://www.jmir.org/2019/3/e11366/", url="http://www.ncbi.nlm.nih.gov/pubmed/30912759" } @Article{info:doi/10.2196/12584, author="{\O}stervang, Christina and Vestergaard, Vedel Lene and Dieperink, Brochstedt Karin and Danbj{\o}rg, Boe Dorthe", title="Patient Rounds With Video-Consulted Relatives: Qualitative Study on Possibilities and Barriers From the Perspective of Healthcare Providers", journal="J Med Internet Res", year="2019", month="Mar", day="25", volume="21", number="3", pages="e12584", keywords="telehealth", keywords="family", keywords="relatives", keywords="cancer", keywords="technology", keywords="qualitative research", abstract="Background: In cancer settings, relatives are often seen as a resource as they are able to support the patient and remember information during hospitalization. However, geographic distance to hospitals, work, and family obligations are reasons that may cause difficulties for relatives' physical participation during hospitalization. This provided inspiration to uncover the possibility of telehealth care in connection with enabling participation by relatives during patient rounds. Telehealth is used advantageously in health care systems but is also at risk of failing during the implementation process because of, for instance, health care professionals' resistance to change. Research on the implications for health care professionals in involving relatives' participation through virtual presence during patient rounds is limited. Objective: This study aimed to investigate health care professionals' experiences in using and implementing technology to involve relatives during video-consulted patient rounds. Methods: The design was a qualitative approach. Methods used were focus group interviews, short open interviews, and field observations of health care professionals working at a cancer department. The text material was analyzed using interpretative phenomenological analysis. Results: Field observational studies were conducted for 15 days, yielding 75 hours of observation. A total of 14 sessions of video-consulted patient rounds were observed and 15 pages of field notes written, along with 8 short open interviews with physicians, nurses, and staff from management. Moreover, 2 focus group interviews with 9 health care professionals were conducted. Health care professionals experienced the use of technology as a way to facilitate involvement of the patient's relatives, without them being physically present. Moreover, it raised questions about whether this way of conducting patient rounds could address the needs of both the patients and the relatives. Time, culture, and change of work routines were found to be the major barriers when implementing new technology involving relatives. Conclusions: This study identified a double change by introducing both new technology and virtual participation by relatives at the same time. The change had consequences on health care professionals' work routines with regard to work load, culture, and organization because of the complexity in health care systems. ", doi="10.2196/12584", url="http://www.jmir.org/2019/3/e12584/", url="http://www.ncbi.nlm.nih.gov/pubmed/30907746" } @Article{info:doi/10.2196/12105, author="Schlaudecker, D. Jeffrey and Goodnow, Keesha and Goroncy, Anna and Hartmann, Reid and Regan, Saundra and Rich, Megan and Butler, Adam and White, Christopher", title="Meaningful Partnerships: Stages of Development of a Patient and Family Advisory Council at a Family Medicine Residency Clinic", journal="J Participat Med", year="2019", month="Mar", day="20", volume="11", number="1", pages="e12105", keywords="advisory committee", keywords="patient-centered care", keywords="patient engagement", keywords="graduate medical education", abstract="Background: Partnering with patients and families is a crucial step in optimizing health. A patient and family advisory council (PFAC) is a group of patients and family members working together collaboratively with providers and staff to improve health care. Objective: This study aimed to describe the creation of a PFAC within a family medicine residency clinic. To understand the successful development of a PFAC, challenges, potential barriers, and positive outcomes of a meaningful partnership will be reported. Methods: The stages of PFAC development include leadership team formation and initial training, PFAC member recruitment, and meeting launch. Following a description of each stage, outcomes are outlined and lessons learned are discussed. PFAC members completed an open-ended survey and participated in a focus group interview at the completion of the first year. Interviewees provided feedback regarding (1) favorite aspects or experiences, (2) PFAC impact on a family medicine clinic, and (3) future projects to improve care. Common themes will be presented. Results: The composition of the PFAC consisted of 18 advisors, including 8 patient and family advisors, 4 staff advisors, 4 resident physician advisors, and 2 faculty physician advisors. The average meeting attendance was 12 members over 11 meetings in the span of the first year. A total of 13 out of 13 (100\%) surveyed participants were satisfied with their experience serving on the PFAC. Conclusions: PFACs provide a platform for patient engagement and an opportunity to drive home key concepts around collaboration within a residency training program. A framework for the creation of a PFAC, along with lessons learned, can be utilized to advise other residency programs in developing and evaluating meaningful PFACs. ", doi="10.2196/12105", url="http://jopm.jmir.org/2019/1/e12105/" } @Article{info:doi/10.2196/11371, author="Kildea, John and Battista, John and Cabral, Briana and Hendren, Laurie and Herrera, David and Hijal, Tarek and Joseph, Ackeem", title="Design and Development of a Person-Centered Patient Portal Using Participatory Stakeholder Co-Design", journal="J Med Internet Res", year="2019", month="Feb", day="11", volume="21", number="2", pages="e11371", keywords="patient portals", keywords="patient participation", keywords="telemedicine", keywords="software design", abstract="Background: Patient portals are increasingly accepted as part of standard medical care. However, to date, most patient portals provide just passive access to medical data. The use of modern technology such as smartphones and data personalization algorithms offers the potential to make patient portals more person-centered and enabling. Objective: The aim of this study is to share our experience in designing and developing a person-centered patient portal following a participatory stakeholder co-design approach. Methods: Our stakeholder co-design approach comprised 6 core elements: (1) equal coleadership, including a cancer patient on treatment; (2) patient preference determination; (3) security, governance, and legal input; (4) continuous user evaluation and feedback; (5) continuous staff input; and (6) end-user testing. We incorporated person-centeredness by recognizing that patients should decide for themselves their level of medical data access, all medical data should be contextualized with explanatory content, and patient educational material should be personalized and timely. Results: Using stakeholder co-design, we built, and are currently pilot-testing, a person-centered patient portal smartphone app called Opal. Conclusions: Inclusion of all stakeholders in the design and development of patient-facing software can help ensure that the necessary elements of person-centeredness, clinician acceptability, and informatics feasibility are achieved. ", doi="10.2196/11371", url="http://www.jmir.org/2019/2/e11371/", url="http://www.ncbi.nlm.nih.gov/pubmed/30741643" } @Article{info:doi/10.2196/10404, author="Hung, Yu-Ting and Wu, Ching-Fang and Liang, Te-Hsin and Chou, Shin-Shang and Chen, Guan-Liang and Wu, Pei-Ni and Su, Guan-Rong and Jang, Tsuey-Huah and Liu, Chang-Yi and Wang, Ching-Yen and Tseng, Ling-Ming and Sheu, Shuh-Jen", title="Developing a Decision-Aid Website for Breast Cancer Surgery: An Action Research Approach", journal="J Med Internet Res", year="2019", month="Feb", day="04", volume="21", number="2", pages="e10404", keywords="breast cancer", keywords="surgery-related decision making", keywords="website", keywords="action research", abstract="Background: Patients with early-stage breast cancer have numerous options when choosing the type of breast surgery method to be applied. Each of these options lead to a similar long-term survival rate, but result in significant differences in appearance, function, cost, recurrence rate, and various other relevant considerations. However, the time available for detailed communication with each patient is often limited in clinics, which puts these women under great psychological stress and can hinder their surgery-related decision making. Objective: The objective of this study was to develop a multipurpose surgery decision-making website providing medical information, psychological support, and decision-related simulation for women during breast cancer surgery-related decision making. Methods: Using the 4 steps of action research, which involve multigroup teamwork via regular team meetings, the following were performed: (1) Planning: searching, analyzing, and evaluating health websites to consensually decide the major infrastructure; (2) Action: work was performed simultaneously in 4 groups, which consisted of medical information collection and editing, patient interviews and data extraction, webpage content design, and programming to create or host the website; (3) Evaluation: the website was tested by clinical experts and focus groups of former breast cancer patients to assess its effectiveness and pinpoint appropriate improvements; and (4) Reflection: constant dialogue was conducted between the various participants at each step, which was used as the foundation and motivation of next plan-action-evaluation-reflection circle. Results: Using the action research approach, we completed the development of our website, which includes the following: (1) ``Woman's Voice''---an animated comic depicting the story of a female breast cancer patient with interspersed questions for the users that will help them better empathize with the experience; (2) ``Cancer Information Treasure House''---providing breast cancer surgery-related information through text, tables, pictures and a presentation video; (3) ``Decision-making Simulator''---helping patients think through and check the pros and cons of the different surgical options via visual-based interactions including ``Stairs Climbing'' and ``Fruit of Hope''; and (4) ``Recommended Links''---providing reliable websites for further reference. Additionally, we have further improved the website based on the feedback received from postsurgery breast cancer patients and clinicians. We hope to continue improving to better meet both the patients' and health providers' needs and become a practical decision-making aid for patients undergoing breast cancer surgery. Conclusions: We have created the first breast cancer surgery decision-making assistance tool in Taiwan using a ``Web-based'' and multifunctional website design. This site aims to provide health care knowledge, psychological healing, and emotional support functions, as well as decision-making capability enhancement simulations. We look forward to assisting breast cancer patients in their decision-making process and expect our website to increase patient's autonomy and improve their communication with clinicians. ", doi="10.2196/10404", url="https://www.jmir.org/2019/2/e10404/", url="http://www.ncbi.nlm.nih.gov/pubmed/30714941" } @Article{info:doi/10.2196/10008, author="Duckworth, Megan and Adelman, Jason and Belategui, Katherine and Feliciano, Zinnia and Jackson, Emily and Khasnabish, Srijesa and Lehman, Sun I-Fong and Lindros, Ellen Mary and Mortimer, Heather and Ryan, Kasey and Scanlan, Maureen and Berger Spivack, Linda and Yu, Ping Shao and Bates, Westfall David and Dykes, C. Patricia", title="Assessing the Effectiveness of Engaging Patients and Their Families in the Three-Step Fall Prevention Process Across Modalities of an Evidence-Based Fall Prevention Toolkit: An Implementation Science Study", journal="J Med Internet Res", year="2019", month="Jan", day="21", volume="21", number="1", pages="e10008", keywords="clinical decision support", keywords="fall prevention", keywords="fall prevention toolkit", keywords="health information technology", keywords="implementation science", keywords="patient safety", abstract="Background: Patient falls are a major problem in hospitals. The development of a Patient-Centered Fall Prevention Toolkit, Fall TIPS (Tailoring Interventions for Patient Safety), reduced falls by 25\% in acute care hospitals by leveraging health information technology to complete the 3-step fall prevention process---(1) conduct fall risk assessments; (2) develop tailored fall prevention plans with the evidence-based interventions; and (3) consistently implement the plan. We learned that Fall TIPS was most effective when patients and family were engaged in all 3 steps of the fall prevention process. Over the past decade, our team developed 3 Fall TIPS modalities---the original electronic health record (EHR) version, a laminated paper version that uses color to provide clinical decision support linking patient-specific risk factors to the interventions, and a bedside display version that automatically populates the bedside monitor with the patients' fall prevention plan based on the clinical documentation in the EHR. However, the relative effectiveness of each Fall TIPS modality for engaging patients and family in the 3-step fall prevention process remains unknown. Objective: This study aims to examine if the Fall TIPS modality impacts patient engagement in the 3-step fall prevention process and thus Fall TIPS efficacy. Methods: To assess patient engagement in the 3-step fall prevention process, we conducted random audits with the question, ``Does the patient/family member know their fall prevention plan?'' In addition, audits were conducted to measure adherence, defined by the presence of the Fall TIPS poster at the bedside. Champions from 3 hospitals reported data from April to June 2017 on 6 neurology and 7 medical units. Peer-to-peer feedback to reiterate the best practice for patient engagement was central to data collection. Results: Overall, 1209 audits were submitted for the patient engagement measure and 1401 for the presence of the Fall TIPS poster at the bedside. All units reached 80\% adherence for both measures. While some units maintained high levels of patient engagement and adherence with the poster protocol, others showed improvement over time, reaching clinically significant adherence (>80\%) by the final month of data collection. Conclusions: Each Fall TIPS modality effectively facilitates patient engagement in the 3-step fall prevention process, suggesting all 3 can be used to integrate evidence-based fall prevention practices into the clinical workflow. The 3 Fall TIPS modalities may prove an effective strategy for the spread, allowing diverse institutions to choose the modality that fits with the organizational culture and health information technology infrastructure. ", doi="10.2196/10008", url="http://www.jmir.org/2019/1/e10008/", url="http://www.ncbi.nlm.nih.gov/pubmed/30664454" } @Article{info:doi/10.2196/10793, author="Lalor, P. John and Woolf, Beverly and Yu, Hong", title="Improving Electronic Health Record Note Comprehension With NoteAid: Randomized Trial of Electronic Health Record Note Comprehension Interventions With Crowdsourced Workers", journal="J Med Internet Res", year="2019", month="Jan", day="16", volume="21", number="1", pages="e10793", keywords="health literacy", keywords="crowdsourcing", keywords="natural language processing", keywords="information storage and retrieval", keywords="psychometrics", keywords="MedlinePlus", abstract="Background: Patient portals are becoming more common, and with them, the ability of patients to access their personal electronic health records (EHRs). EHRs, in particular the free-text EHR notes, often contain medical jargon and terms that are difficult for laypersons to understand. There are many Web-based resources for learning more about particular diseases or conditions, including systems that directly link to lay definitions or educational materials for medical concepts. Objective: Our goal is to determine whether use of one such tool, NoteAid, leads to higher EHR note comprehension ability. We use a new EHR note comprehension assessment tool instead of patient self-reported scores. Methods: In this work, we compare a passive, self-service educational resource (MedlinePlus) with an active resource (NoteAid) where definitions are provided to the user for medical concepts that the system identifies. We use Amazon Mechanical Turk (AMT) to recruit individuals to complete ComprehENotes, a new test of EHR note comprehension. Results: Mean scores for individuals with access to NoteAid are significantly higher than the mean baseline scores, both for raw scores (P=.008) and estimated ability (P=.02). Conclusions: In our experiments, we show that the active intervention leads to significantly higher scores on the comprehension test as compared with a baseline group with no resources provided. In contrast, there is no significant difference between the group that was provided with the passive intervention and the baseline group. Finally, we analyze the demographics of the individuals who participated in our AMT task and show differences between groups that align with the current understanding of health literacy between populations. This is the first work to show improvements in comprehension using tools such as NoteAid as measured by an EHR note comprehension assessment tool as opposed to patient self-reported scores. ", doi="10.2196/10793", url="http://www.jmir.org/2019/1/e10793/", url="http://www.ncbi.nlm.nih.gov/pubmed/30664453" } @Article{info:doi/10.2196/jmir.9076, author="Khanbhai, Mustafa and Flott, Kelsey and Darzi, Ara and Mayer, Erik", title="Evaluating Digital Maturity and Patient Acceptability of Real-Time Patient Experience Feedback Systems: Systematic Review", journal="J Med Internet Res", year="2019", month="Jan", day="14", volume="21", number="1", pages="e9076", keywords="digital maturity", keywords="digital technology", keywords="feedback", keywords="patient experience", keywords="real time", abstract="Background: One of the essential elements of a strategic approach to improving patients' experience is to measure and report on patients' experiences in real time. Real-time feedback (RTF) is increasingly being collected using digital technology; however, there are several factors that may influence the success of the digital system. Objective: The aim of this review was to evaluate the digital maturity and patient acceptability of real-time patient experience feedback systems. Methods: We systematically searched the following databases to identify papers that used digital systems to collect RTF: The Cochrane Library, Global Health, Health Management Information Consortium, Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, Web of Science, and CINAHL. In addition, Google Scholar and gray literature were utilized. Studies were assessed on their digital maturity using a Digital Maturity Framework on the basis of the following 4 domains: capacity/resource, usage, interoperability, and impact. A total score of 4 indicated the highest level of digital maturity. Results: RTF was collected primarily using touchscreens, tablets, and Web-based platforms. Implementation of digital systems showed acceptable response rates and generally positive views from patients and staff. Patient demographics according to RTF responses varied. An overrepresentation existed in females with a white predominance and in patients aged ?65 years. Of 13 eligible studies, none had digital systems that were deemed to be of the highest level of maturity. Three studies received a score of 3, 2, and 1, respectively. Four studies scored 0 points. While 7 studies demonstrated capacity/resource, 8 demonstrated impact. None of the studies demonstrated interoperability in their digital systems. Conclusions: Patients and staff alike are willing to engage in RTF delivered using digital technology, thereby disrupting previous paper-based feedback. However, a lack of emphasis on digital maturity may lead to ineffective RTF, thwarting improvement efforts. Therefore, given the potential benefits of RTF, health care services should ensure that their digital systems deliver across the digital maturity continuum. ", doi="10.2196/jmir.9076", url="https://www.jmir.org/2019/1/e9076/", url="http://www.ncbi.nlm.nih.gov/pubmed/31344680" } @Article{info:doi/10.2196/11089, author="Primholdt Christensen, Nina and Danbj{\o}rg, Boe Dorthe", title="Use of Video Consultations for Patients With Hematological Diseases From a Patient Perspective: Qualitative Study", journal="J Participat Med", year="2018", month="Dec", day="19", volume="10", number="4", pages="e11089", keywords="consultations", keywords="telehealth", keywords="technology", keywords="patient", keywords="hematology", abstract="Background: The need for the use of telemedicine is expected to increase in the coming years. There is, furthermore, a lack of evidence about the use of video consultations for hematological patients, and how the use of video consultations is experienced from the patients' perspective. Objective: This study aimed to identify patients' experiences with the use of video consultations in place of face-to-face consultations, what it means to the patient to save the travel time, and how the roles between patients and health care professionals are experienced when using video consultation. This study concerns stable, not acutely ill, patients with hematological disease. Methods: The study was designed as an exploratory and qualitative study. Data were collected through participant observations and semistructured interviews and analyzed in a postphenomenological framework. Results: The data analysis revealed three categories: ``Intimacy is not about physical presence,'' ``Handling technology,'' and ``Technology increases the freedom that the patients desire.'' Conclusions: This study demonstrates what is important for patients with regards to telemedicine and how they felt about seeing health care professionals through a screen. It was found that intimacy can be mediated through a screen and physical presence is not as important to the patient as other things. The study further pointed out how patients valued being involved in the planning of their treatment. The patients also valued the freedom associated with telemedicine and actively took responsibility for their own course of treatment. Patients felt that video consultations allowed them to be free and active, despite their illness. ", doi="10.2196/11089", url="https://jopm.jmir.org/2018/4/e11089/" } @Article{info:doi/10.2196/10676, author="Br{\"u}tting, Julia and Steeb, Theresa and Reinhardt, Lydia and Berking, Carola and Meier, Friedegund", title="Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis", journal="JMIR Cancer", year="2018", month="Dec", day="13", volume="4", number="2", pages="e10676", keywords="melanoma", keywords="immunotherapy", keywords="internet", keywords="patient education", keywords="quality", keywords="readability", keywords="websites", keywords="reliability", keywords="information", abstract="Background: Patients diagnosed with melanoma frequently search the internet for treatment information, including novel and complex immunotherapy. However, health literacy is limited among half of the German population, and no assessment of websites on melanoma treatment has been performed so far. Objective: The aim of this study was to identify and assess the most visible websites in German language on melanoma immunotherapy. Methods: In accordance with the common Web-based information-seeking behavior of patients with cancer, the first 20 hits on Google, Yahoo, and Bing were searched for combinations of German synonyms for ``melanoma'' and ``immunotherapy'' in July 2017. Websites that met our predefined eligibility criteria were considered for assessment. Three reviewers independently assessed their quality by using the established DISCERN tool and by checking the presence of quality certification. Usability and reliability were evaluated by the LIDA tool and understandability by the Patient Education Materials Assessment Tool (PEMAT). The Flesch Reading Ease Score (FRES) was calculated to estimate the readability. The ALEXA and SISTRIX tools were used to investigate the websites' popularity and visibility. The interrater agreement was determined by calculating Cronbach alpha. Subgroup differences were identified by t test, U test, or one-way analysis of variance. Results: Of 480 hits, 45 single websites from 30 domains were assessed. Only 2 website domains displayed a German quality certification. The average assessment scores, mean (SD), were as follows: DISCERN, 48 (7.6); LIDA (usability), 40 (2.0); LIDA (reliability), 10 (1.6); PEMAT, 69\% (16\%); and FRES, 17 (14), indicating mediocre quality, good usability, and understandability but low reliability and an even very low readability of the included individual websites. SISTRIX scores ranged from 0 to 6872 and ALEXA scores ranged from 17 to 192,675, indicating heterogeneity of the visibility and popularity of German website domains providing information on melanoma immunotherapy. Conclusions: Optimization of the most accessible German websites on melanoma immunotherapy is desirable. Especially, simplification of the readability of information and further adaption to reliability criteria are required to support the education of patients with melanoma and laypersons, and to enhance transparency. ", doi="10.2196/10676", url="https://cancer.jmir.org/2018/2/e10676/", url="http://www.ncbi.nlm.nih.gov/pubmed/30545808" } @Article{info:doi/10.2196/10782, author="Benham-Hutchins, Marge and Brown, A. Sharon and Donovan, E. Erin and Guevara, Henry and Johnson, H. Alisha", title="Spanish-Speaking Hispanic Patients' Information-Sharing Preferences During Hospitalization: An Exploratory Pilot Study", journal="J Participat Med", year="2018", month="Dec", day="06", volume="10", number="4", pages="e10782", keywords="cancer", keywords="chronic disease", keywords="diabetes", keywords="Hispanic", keywords="self-management", abstract="Background: Self-management of chronic conditions, such as cancer or diabetes, requires the coordination of care across multiple care settings. Current patient-centered, hospital-based care initiatives, including bedside nursing handoff and multidisciplinary rounds, often focus on provider information exchange and roles but fall short of the goals of participatory medicine, which recognize the right of patients to partner in their own care and play an active role in self-management. Objective: This study aimed to elicit Spanish-speaking Hispanic patients' perspectives on the exchange and sharing of information during hospitalization. Methods: This exploratory pilot study incorporated a qualitative descriptive approach by using Spanish language focus groups, posthospitalization, to determine patient-identified information needs during hospitalization. Results: Participants preferred paper-based Spanish language medical information. Doctors and nurses were key information providers and communicated with participants verbally, usually with the assistance of a translator. Participants expressed a desire to be informed about medication and treatments, including side effects and why there were changes in medication during hospitalization. In addition, they expressed interest in knowing about the progress of their condition and when they could expect to go home. Emotional readiness to receive information about their condition and prognosis was identified as an individual barrier to asking questions and seeking additional information about their condition(s). Conclusions: Overall, participants shared positive experiences with providers during hospitalization and the usefulness of self-care instructions. Language was not recognized as a barrier by any of the participants. Nevertheless, future research on the influence of emotional readiness on the timing of medical information is needed. ", doi="10.2196/10782", url="http://jopm.jmir.org/2018/4/e10782/" } @Article{info:doi/10.2196/11034, author="Senft, Nicole and Everson, Jordan", title="eHealth Engagement as a Response to Negative Healthcare Experiences: Cross-Sectional Survey Analysis", journal="J Med Internet Res", year="2018", month="Dec", day="05", volume="20", number="12", pages="e11034", keywords="care coordination", keywords="eHealth", keywords="health disparities", keywords="patient-centered care", abstract="Background: eHealth provides individuals with new means of accessing health information and communicating with providers through online channels. Prior evidence suggests that patients use eHealth to find information online when they receive care that is low in patient centeredness. However, it is unclear how other problems with the healthcare-delivery system motivate the use of eHealth, how these problems relate to different kinds of eHealth activities, and which populations are most likely to use eHealth when they receive low-quality care. Objective: We aimed to determine how two types of negative care experiences---low patient centeredness and care coordination problems---motivate the use of different eHealth activities, and whether more highly educated individuals, who may find these tools easier to use, are more likely to use eHealth following negative experiences than less highly educated individuals. Methods: Using nationally representative data from the 2017 Health Information National Trends Survey, we used factor analysis to group 25 different eHealth activities into categories based on the correlation between respondents' reports of their usage. Subsequently, we used multivariate negative binomial generalized linear model regressions to determine whether negative healthcare experiences predicted greater use of these resulting categories. Finally, we stratified our sample based on education level to determine whether the associations between healthcare experiences and eHealth use differed across groups. Results: The study included 2612 individuals. Factor analysis classified the eHealth activities into two categories: provider-facing (eg, facilitating communication with providers) and independent (eg, patient-driven information seeking and communication with non-providers). Negative care experiences were not associated with provider-facing eHealth activity in the overall population (care coordination: P=.16; patient centeredness: P=.57) or among more highly educated respondents (care coordination: P=.73; patient centeredness: P=.32), but respondents with lower education levels who experienced problems with care coordination used provider-facing eHealth more often (IRR=1.40, P=.07). Individuals engaged in more independent eHealth activities if they experienced problems with either care coordination (IRR=1.15 P=.01) or patient-centered communication (IRR=1.16, P=.01). Although care coordination problems predicted independent eHealth activity across education levels (higher education: IRR=1.13 P=.01; lower education: IRR=1.19, P=.07), the relationship between low perceived patient centeredness and independent activity was limited to individuals with lower education levels (IRR=1.25, P=.02). Conclusions: Individuals use a greater number of eHealth activities, especially activities that are independent of healthcare providers, when they experience problems with their healthcare. People with lower levels of education seem particularly inclined to use eHealth when they have negative healthcare experiences. To maximize the potential for eHealth to meet the needs of all patients, especially those who are traditionally underserved by the healthcare system, additional work should be performed to ensure that eHealth resources are accessible and usable to all members of the population. ", doi="10.2196/11034", url="https://www.jmir.org/2018/12/e11034/", url="http://www.ncbi.nlm.nih.gov/pubmed/30518513" } @Article{info:doi/10.2196/10665, author="Alami, Hassane and Gagnon, Marie-Pierre and Fortin, Jean-Paul", title="Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts' and Citizen-Patients' Perspectives", journal="J Participat Med", year="2018", month="Nov", day="12", volume="10", number="4", pages="e10665", keywords="patient participation", keywords="public participation", keywords="health services", keywords="telehealth", keywords="health technology assessment", keywords="decision making", abstract="Background: Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of telehealth services is virtually nonexistent. In view of the societal challenges that telehealth raises, citizen-patient involvement could ensure more balance between evidence from traditional research methodologies and technical experts and the needs and expectations of populations in decisions about telehealth services. Objective: This study aimed to explore the perception of various stakeholders (decision makers, telehealth program and policy managers, clinicians, researchers, evaluators, and citizen-patients) regarding the involvement of citizen-patients in the development of telehealth services in Quebec. In particular, we explored its potential advantages, added value, obstacles, and challenges it raises for decision making. Methods: We used a qualitative research approach based on semistructured individual interviews, with a total of 29 key actors. Respondents were identified by the contact network method. Interviews were recorded and transcribed verbatim. A pragmatic content thematic analysis was performed. To increase the capacity for interpretation and analysis, we were guided by the principle of data triangulation. Results: Citizen-patient involvement in decision making is perceived more as a theoretical idea than as a practical reality in health care organizations or in the health system. There is very little connection between citizen involvement structures or patient and user groups and telehealth leaders. For the respondents, citizen-patient involvement in telehealth could increase the accountability and transparency of decision making and make it more pragmatic within an innovation-driven health system. This involvement could also make citizen-patients ambassadors and promoters of telehealth and improve the quality and organization of health services while ensuring they are more socially relevant. Challenges and constraints that were reported include the ambiguity of the citizen-patient, who should be involved and how, claimant citizen-patient, the risk of professionalization of citizen-patient involvement, and the gap between decision time versus time to involve the citizen-patient. Conclusions: This study provides a basis for future research on the potential of involving citizen-patients in telehealth. There is a great need for research on the issue of citizen-patient involvement as an organizational innovation (in terms of decision-making model). Research on the organizational predisposition and preparation for such a change becomes central. More efforts to synthesize and translate knowledge on public participation in decision making in the health sector, particularly in the field of technology development, are needed. ", doi="10.2196/10665", url="http://jopm.jmir.org/2018/4/e10665/" } @Article{info:doi/10.2196/jmir.9492, author="Moll, Jonas and Rexhepi, Hanife and Cajander, {\AA}sa and Gr{\"u}nloh, Christiane and Huvila, Isto and H{\"a}gglund, Maria and Myreteg, Gunilla and Scandurra, Isabella and {\AA}hlfeldt, Rose-Mharie", title="Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden", journal="J Med Internet Res", year="2018", month="Nov", day="01", volume="20", number="11", pages="e278", keywords="eHealth", keywords="medical records", keywords="national survey", keywords="patients", keywords="patient-accessible electronic health records", keywords="patient portal", keywords="personal health records", abstract="Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally. Objective: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system. Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents. Results: Overall, 2587 users completed the survey with a response rate of 0.61\% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97\% (1629/2587) of respondents were women and 39.81\% (1030/2587) were working or had been working in health care. In addition, 72.08\% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41\% (1737/2539) of respondents wanted access to new information within a day, and 96.58\% (2454/2541) of users reported that they are positive toward Journalen. Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way---several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients. ", doi="10.2196/jmir.9492", url="https://www.jmir.org/2018/11/e278/", url="http://www.ncbi.nlm.nih.gov/pubmed/30389647" } @Article{info:doi/10.2196/10872, author="Shafer, R. Paul and Fowler, Franklin Erika and Baum, Laura and Gollust, E. Sarah", title="Television Advertising and Health Insurance Marketplace Consumer Engagement in Kentucky: A Natural Experiment", journal="J Med Internet Res", year="2018", month="Oct", day="25", volume="20", number="10", pages="e10872", keywords="advertising", keywords="Affordable Care Act", keywords="enrollment", abstract="Background: Reductions in health insurance enrollment outreach could have negative effects on the individual health insurance market. Specifically, consumers may not be informed about the availability of coverage, and if some healthier consumers fail to enroll, there could be a worse risk pool for insurers. Kentucky created its own Marketplace, known as kynect, and adopted Medicaid expansion under the Affordable Care Act, which yielded the largest decline in adult uninsured rate in the United States from 2013 to 2016. The state sponsored an award-winning media campaign, yet after the election of a new governor in 2015, it declined to renew the television advertising contract for kynect and canceled all pending television ads with over a month remaining in the 2016 open enrollment period. Objective: The objective of this study is to examine the stark variation in television advertising across multiple open enrollment periods in Kentucky and use this variation to estimate the dose-response effect of state-sponsored television advertising on consumer engagement with the Marketplace. In addition, we assess to what extent private insurers can potentially help fill the void when governments reduce or eliminate television advertising. Methods: We obtained television advertising (Kantar Media/Campaign Media Analysis Group) and Marketplace data (Kentucky Health Benefit Exchange) for the period of October 1, 2013, through January 31, 2016, for Kentucky. Advertising data at the spot level were collapsed to state-week counts by sponsor type. Similarly, a state-week series of Marketplace engagement and enrollment measures were derived from state reports to Centers for Medicare and Medicaid Services. We used linear regression models to estimate associations between health insurance television advertising volume and measures of information-seeking (calls to call center; page views, visits, and unique visitors to the website) and enrollment (Web-based and total applications, Marketplace enrollment). Results: We found significant dose-response effects of weekly state-sponsored television advertising volume during open enrollment on information-seeking behavior (marginal effects of an additional ad airing per week for website page views: 7973, visits: 390, and unique visitors: 388) and enrollment activity (applications, Web-based: 61 and total: 56). Conclusions: State-sponsored television advertising was associated with nearly 40\% of unique visitors and Web-based applications. Insurance company television advertising was not a significant driver of engagement, an important consideration if cuts to government-sponsored advertising persist. ", doi="10.2196/10872", url="http://www.jmir.org/2018/10/e10872/", url="http://www.ncbi.nlm.nih.gov/pubmed/30361198" } @Article{info:doi/10.2196/11027, author="Scherer, M. Aaron and Witteman, O. Holly and Solomon, Jacob and Exe, L. Nicole and Fagerlin, Angela and Zikmund-Fisher, J. Brian", title="Improving the Understanding of Test Results by Substituting (Not Adding) Goal Ranges: Web-Based Between-Subjects Experiment", journal="J Med Internet Res", year="2018", month="Oct", day="19", volume="20", number="10", pages="e11027", keywords="decision making, education of patients, electronic health record, computer graphics, clinical laboratory information systems", abstract="Background: Most displays of laboratory test results include a standard reference range. For some patients (eg, those with chronic conditions), however, getting a result within the standard range may be unachievable, inappropriate, or even harmful. Objective: The objective of our study was to test the impact of including clinically appropriate goal ranges outside the standard range in the visual displays of laboratory test results. Methods: Participants (N=6776) from a demographically diverse Web-based panel viewed hypothetical glycated hemoglobin (HbA1c) test results (HbA1c either 6.2\% or 8.2\%) as part of a type 2 diabetes management scenario. Test result visual displays included either a standard range (4.5\%-5.7\%) only, a goal range (6.5\%-7.5\%) added to the standard range, or the goal range only. The results were displayed in 1 of the following 3 display formats: (1) a table; (2) a simple, two-colored number line (simple line); or (3) a number line with diagnostic categories indicated via colored blocks (block line). Primary outcome measures were comprehension of and negative reactions to test results. Results: While goal range information did not influence the understanding of HbA1c=8.2\% results, the goal range only display produced higher levels of comprehension and decreased negative reactions to HbA1c=6.2\% test results compared with the no goal range and goal range added conditions. Goal range information was less helpful in the block line condition versus the other formats. Conclusions: Replacing the standard range with a clinically appropriate goal range could help patients better understand how their test results relate to their personal targets. ", doi="10.2196/11027", url="http://www.jmir.org/2018/10/e11027/", url="http://www.ncbi.nlm.nih.gov/pubmed/30341053" } @Article{info:doi/10.2196/10054, author="Stokke, Randi", title="Older People Negotiating Independence and Safety in Everyday Life Using Technology: Qualitative Study", journal="J Med Internet Res", year="2018", month="Oct", day="19", volume="20", number="10", pages="e10054", keywords="welfare technology", keywords="patient care", keywords="the social alarm", keywords="caring practices", keywords="home care services", keywords="science and technology studies", keywords="public service innovation", keywords="co-production", abstract="Background: Due to demographic changes with an aging population, there is a demand for technology innovations in care services. However, technology innovations have proven difficult to implement in regular use. To understand the complexity of technology innovations in care practices, we need a knowledge base of the complex and diverse experiences of people interacting with established technologies. Objective: This paper addresses the research gap in relation to understanding the microcontext of co-production of care involving established technologies integrated into care practices. The paper also aims to provide a framework for exploring what really happens when different actors use technology in care practices. Methods: Participant observations and 22 interviews with actors using social alarms were conducted employing the critical incident technique. A stepwise deductive-inductive analysis was then performed. Results: The results reveal how co-production of care assumes different meanings according to how actors use the technology. The results also show how technology innovation changes the dynamics between the actors and rearranges care practices. Independent and safe living is co-produced through performing bricolages and optimizing practice. Additionally, this opens up for unexpected results and bricolages as an integrated part of technology innovations. Conclusions: This study illustrates how care services are always co-produced between the actors involved. By using aspects from science and technology studies, this paper provides a framework for exploring technology in use in care practices. The framework provides tools to unpack and articulate the process of co-producing services. ", doi="10.2196/10054", url="http://www.jmir.org/2018/10/e10054/", url="http://www.ncbi.nlm.nih.gov/pubmed/30341049" } @Article{info:doi/10.2196/10135, author="de Jong, Marije Jelske and Ogink, AM Paula and van Bunningen, GM Carin and Driessen, JB Rieke and Engelen, JLPG Lucien and Heeren, Barend and Bredie, JH Sebastian and van de Belt, H. Tom", title="A Cloud-Based Virtual Outpatient Clinic for Patient-Centered Care: Proof-of-Concept Study", journal="J Med Internet Res", year="2018", month="Sep", day="24", volume="20", number="9", pages="e10135", keywords="cloud service", keywords="digital health", keywords="eHealth", keywords="mHealth", keywords="mobile phone", keywords="outpatient clinic", keywords="patient-centeredness", abstract="Background: Most electronic health (eHealth) interventions offered to patients serve a single purpose and lack integration with other tools or systems. This is problematic because the majority of patients experience comorbidity and chronic disease, see multiple specialists, and therefore have different needs regarding access to patient data, communication with peers or providers, and self-monitoring of vital signs. A multicomponent digital health cloud service that integrates data sharing, collection, and communication could facilitate patient-centered care in combination with a hospital patient portal and care professionals. Objective: This study aimed to assess the feasibility and functionality of a new cloud-based and multicomponent outpatient clinic, the ``Virtual Outpatient Clinic'' (VOC). Methods: The VOC consists of 6 digital tools that facilitate self-monitoring (blood pressure, weight, and pain) and communication with peers and providers (chat and videoconferencing) connected to a cloud-based platform and the hospital patient portal to facilitate access to (self-collected) medical data. In this proof-of-concept study, 10 patients from both Departments of Internal Medicine and Dermatology (N=20) used all options of the VOC for 6 weeks. An eNurse offered support to participants during the study. We assessed the feasibility, usage statistics, content, adherence, and identified technical issues. Moreover, we conducted qualitative interviews with all participants by following a standard interview guide to identify user experiences, including barriers, facilitators, and potential effects. Results: Most participants successfully used all options of the VOC and were positive about different tools and apps and the integral availability of their information. The adherence was 37\% (7/19) for weight scale, 58\% (11/19) for blood pressure monitor, and 70\% (14/20) and 85\% (17/20) for pain score and daily questions, respectively. The adherence for personal health record was 65\% (13/20) and 60\% (12/20) for the patient portal system. Qualitative data showed that performance and effort expectancy scored high among participants, indicating that using the VOC is convenient, easy, and time-saving. Conclusions: The VOC is a promising integrated Web-based technology that combines self-management, data sharing, and communication between patients and professionals. The system can be personalized by connecting various numbers of components, which could make it a relevant tool for other patient groups. Before a system, such as the VOC, can be implemented in daily practice, prospective studies focused on evaluating outcomes, costs, and patient-centeredness are needed. ", doi="10.2196/10135", url="http://www.jmir.org/2018/9/e10135/", url="http://www.ncbi.nlm.nih.gov/pubmed/30249584" } @Article{info:doi/10.2196/10897, author="Victoria Diniz, Marisa and Sun, Y. Sue and Barsottini, Claudia and Viggiano, Mauricio and Signorini Filho, C. Roney and Sanches Ozane Pimenta, Bruna and Elias, M. Kevin and Horowitz, S. Neil and Braga, Antonio and Berkowitz, S. Ross", title="Experience With the Use of an Online Community on Facebook for Brazilian Patients With Gestational Trophoblastic Disease: Netnography Study", journal="J Med Internet Res", year="2018", month="Sep", day="24", volume="20", number="9", pages="e10897", keywords="gestational trophoblastic disease", keywords="social media", keywords="Facebook", keywords="mobile phone", abstract="Background: The term gestational trophoblastic disease (GTD) includes both complete and partial moles, which are uncommon nonviable pregnancies with the potential to evolve into a malignancy known as gestational trophoblastic neoplasia. While highly curable, the potential for malignancy associated with molar pregnancies worries the patients, leading them to seek information on the internet. A Facebook page headed by Brazilian specialized physicians in GTD was created in 2013 to provide online support for GTD patients. Objective: The objective of our study was to describe the netnography of Brazilian patients with GTD on Facebook (FBGTD) and to evaluate whether their experiences differed depending on whether they received care in a Brazilian gestational trophoblastic disease reference center (BRC) or elsewhere. Methods: This was a cross-sectional study using G Suite Google Platform. The members of FBGTD were invited to participate in a survey from March 6 to October 5, 2017, and a netnographic analysis of interactions among the members was performed. Results: The survey was answered by 356 Brazilian GTD patients: 176 reference center patients (RCP) treated at a BRC and 180 nonreference center patients (NRCP) treated elsewhere. On comparing the groups, we found that RCP felt safer and more confident at the time of diagnosis of GTD (P=.001). RCP were more likely to utilize FBGTD subsequent to a referral by health assistants (P<.001), whereas NRCP more commonly discovered FBGTD through Web searches (P<.001). NRCP had higher educational levels (P=.009) and were more commonly on FBGTD for ? 6 months (P=.03). NRCP were more likely to report that doctors did not adequately explain GTD at diagnosis (P=.007), had more doubts about GTD treatment (P=.01), and were less likely to use hormonal contraception (P<.001). Overall, 89\% (317/356) patients accessed the internet preferentially from home and using mobile phones, and 98\% (349/354) patients declared that they felt safe reading the recommendations posted by FBGTD physicians. Conclusions: This netnographic analysis of GTD patients on FBGTD shows that an Web-based doctor-patient relationship can supplement the care for women with GTD. This resource is particularly valuable for women being cared for outside of established reference centers. ", doi="10.2196/10897", url="http://www.jmir.org/2018/9/e10897/", url="http://www.ncbi.nlm.nih.gov/pubmed/30249575" } @Article{info:doi/10.2196/10297, author="Westendorf, Lauren and Shaer, Orit and Pollalis, Christina and Verish, Clarissa and Nov, Oded and Ball, Price Mad", title="Exploring Genetic Data Across Individuals: Design and Evaluation of a Novel Comparative Report Tool", journal="J Med Internet Res", year="2018", month="Sep", day="24", volume="20", number="9", pages="e10297", keywords="genomics", keywords="consumer health informatics", abstract="Background: The growth in the availability of personal genomic data to nonexperts poses multiple challenges to human-computer interaction research; data are highly sensitive, complex, and have health implications for individuals and families. However, there has been little research on how nonexpert users explore their genomic data. Objective: We focus on how to support nonexperts in exploring and comparing their own personal genomic report with those of other people. We designed and evaluated CrossGenomics, a novel tool for comparing personal genetic reports, which enables exploration of shared and unshared genetic variants. Focusing on communicating comparative impact, rarity, and certainty, we evaluated alternative novel interactive prototypes. Methods: We conducted 3 user studies. The first focuses on assessing the usability and understandability of a prototype that facilitates the comparison of reports from 2 family members. Following a design iteration, we studied how various prototypes support the comparison of genetic reports of a 4-person family. Finally, we evaluated the needs of early adopters---people who share their genetic reports publicly for comparing their genetic reports with that of others. Results: In the first study, sunburst- and Venn-based comparisons of two genomes led to significantly higher domain comprehension, compared with the linear comparison and with the commonly used tabular format. However, results show gaps between objective and subjective comprehension, as sunburst users reported significantly lower perceived understanding and higher levels of confusion than the users of the tabular report. In the second study, users who were allowed to switch between the different comparison views presented higher comprehension levels, as well as more complex reasoning than users who were limited to a single comparison view. In the third study, 35\% (17/49) reported learning something new from comparing their own data with another person's data. Users indicated that filtering and toggling between comparison views were the most useful features. Conclusions: Our findings (1) highlight features and visualizations that show strengths in facilitating user comprehension of genomic data, (2) demonstrate the value of affording users the flexibility to examine the same report using multiple views, and (3) emphasize users' needs in comparison of genomic data. We conclude with design implications for engaging nonexperts with complex multidimensional genomic data. ", doi="10.2196/10297", url="http://www.jmir.org/2018/9/e10297/", url="http://www.ncbi.nlm.nih.gov/pubmed/30249582" } @Article{info:doi/10.2196/jmir.9418, author="Hoogenbosch, Bas and Postma, Jeroen and de Man-van Ginkel, M. Janneke and Tiemessen, AM Nicole and van Delden, JM Johannes and van Os-Medendorp, Harmieke", title="Use and the Users of a Patient Portal: Cross-Sectional Study", journal="J Med Internet Res", year="2018", month="Sep", day="17", volume="20", number="9", pages="e262", keywords="patient portals", keywords="eHealth literacy", keywords="Unified Theory of Acceptance and Use of Technology", abstract="Background: Patient portals offer patients access to their medical information and tools to communicate with health care providers. It has been shown that patient portals have the potential to positively impact health outcomes and efficiency of health care. It is therefore important that health care organizations identify the patients who use or do not use the patient portal and explore the reasons in either case. The Unified Theory of Acceptance and Use of Technology (UTAUT) is a frequently used theory for explaining the use of information technology. It consists of the following constructs: performance expectancy, effort expectancy, social influence, facilitating conditions, and behavioral intention to use. Objective: This study aimed to explore the prevalence of patient portal use and the characteristics of patients who use or do not use a patient portal. The main constructs of UTAUT, together with demographics and disease- and care-related characteristics, have been measured to explore the predictive factors of portal use. Methods: A cross-sectional study was conducted in the outpatient departments for adult patients of a university hospital in the Netherlands. Following outcomes were included: self-reported portal use, characteristics of users such as demographics, disease- and care-related data, eHealth literacy (modified score), and scores of UTAUT constructs. Descriptive analyses and univariate and multivariate logistic regression were also conducted. Results: In the analysis, 439 adult patients were included. Furthermore, 32.1\% (141/439) identified as being a user of the patient portal; 31.2\% (137/439) indicated as nonusers, but being aware of the existence of the portal; and 36.6\% (161/439) as being nonusers not aware of the existence of the portal. In the entire study population, the factors of being chronically ill (odds ratio, OR 1.62, 95\% CI 1.04-2.52) and eHealth literacy (modified score; OR 1.12, 95\% CI 1.07-1.18) best predicted portal use. In users and nonusers who were aware of the portal, UTAUT constructs were added to the multivariate logistic regression, with chronically ill and modified eHealth literacy sum score. Effort expectancy (OR 13.02, 95\% CI 5.68-29.87) and performance expectancy (OR 2.84, 95\% CI 1.65-4.90) are shown to significantly influence portal use in this group. Conclusions: Approximately one-third of the patients of a university hospital self-reported using the patient portal; most expressed satisfaction. At first sight, being chronically ill and higher scores on the modified eHealth literacy scale explained portal use. Adding UTAUT constructs to the model revealed that effort expectancy (ease of use and knowledge and skills related to portal use) and performance expectancy (perceived usefulness) influenced portal use. Interventions to improve awareness of the portal and eHealth literacy skills of patients and further integration of the patient portal in usual face-to-face care are needed to increase use and potential subsequent patient benefits. ", doi="10.2196/jmir.9418", url="http://www.jmir.org/2018/9/e262/", url="http://www.ncbi.nlm.nih.gov/pubmed/30224334" } @Article{info:doi/10.2196/11308, author="Barr, J. Paul and Bonasia, Kyra and Verma, Kanak and Dannenberg, D. Michelle and Yi, Cameron and Andrews, Ethan and Palm, Marisha and Cavanaugh, L. Kerri and Masel, Meredith and Durand, Marie-Anne", title="Audio-/Videorecording Clinic Visits for Patient's Personal Use in the United States: Cross-Sectional Survey", journal="J Med Internet Res", year="2018", month="Sep", day="12", volume="20", number="9", pages="e11308", keywords="audiorecording", keywords="health care", keywords="health system", keywords="policy", keywords="United States", keywords="videorecording", abstract="Background: Few clinics in the United States routinely offer patients audio or video recordings of their clinic visits. While interest in this practice has increased, to date, there are no data on the prevalence of recording clinic visits in the United States. Objective: Our objectives were to (1) determine the prevalence of audiorecording clinic visits for patients' personal use in the United States, (2) assess the attitudes of clinicians and public toward recording, and (3) identify whether policies exist to guide recording practices in 49 of the largest health systems in the United States. Methods: We administered 2 parallel cross-sectional surveys in July 2017 to the internet panels of US-based clinicians (SERMO Panel) and the US public (Qualtrics Panel). To ensure a diverse range of perspectives, we set quotas to capture clinicians from 8 specialties. Quotas were also applied to the public survey based on US census data (gender, race, ethnicity, and language other than English spoken at home) to approximate the US adult population. We contacted 49 of the largest health systems (by clinician number) in the United States by email and telephone to determine the existence, or absence, of policies to guide audiorecordings of clinic visits for patients' personal use. Multiple logistic regression models were used to determine factors associated with recording. Results: In total, 456 clinicians and 524 public respondents completed the surveys. More than one-quarter of clinicians (129/456, 28.3\%) reported that they had recorded a clinic visit for patients' personal use, while 18.7\% (98/524) of the public reported doing so, including 2.7\% (14/524) who recorded visits without the clinician's permission. Amongst clinicians who had not recorded a clinic visit, 49.5\% (162/327) would be willing to do so in the future, while 66.0\% (346/524) of the public would be willing to record in the future. Clinician specialty was associated with prior recording: specifically oncology (odds ratio [OR] 5.1, 95\% CI 1.9-14.9; P=.002) and physical rehabilitation (OR 3.9, 95\% CI 1.4-11.6; P=.01). Public respondents who were male (OR 2.11, 95\% CI 1.26-3.61; P=.005), younger (OR 0.73 for a 10-year increase in age, 95\% CI 0.60-0.89; P=.002), or spoke a language other than English at home (OR 1.99; 95\% CI 1.09-3.59; P=.02) were more likely to have recorded a clinic visit. None of the large health systems we contacted reported a dedicated policy; however, 2 of the 49 health systems did report an existing policy that would cover the recording of clinic visits for patient use. The perceived benefits of recording included improved patient understanding and recall. Privacy and medicolegal concerns were raised. Conclusions: Policy guidance from health systems and further examination of the impact of recordings---positive or negative---on care delivery, clinician-related outcomes, and patients' behavioral and health-related outcomes is urgently required. ", doi="10.2196/11308", url="http://www.jmir.org/2018/9/e11308/", url="http://www.ncbi.nlm.nih.gov/pubmed/30209029" } @Article{info:doi/10.2196/medinform.8828, author="Risling, Tracie and Martinez, Juan and Young, Jeremy and Thorp-Froslie, Nancy", title="Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study", journal="JMIR Med Inform", year="2018", month="Sep", day="10", volume="6", number="3", pages="e43", keywords="digital health", keywords="electronic health record", keywords="patient engagement", keywords="patient empowerment", keywords="patient portal", abstract="Background: The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive. Objective: The primary objective of this research was to explore the views of participants enrolled in an electronic health record portal access trial regarding the resultant influence of this technology on their feelings of patient empowerment. Methods: The exploration of patient empowerment within a digital health context was done with participants in a tethered patient portal trial using interpretive description. Interpretive description is a qualitative methodology developed to pragmatically address clinical health questions. Patient demographics, self-reported health status, and self-identified technology adaptation contributed to the assessment of empowerment in this qualitative approach. Results: This research produced a view of patient empowerment within the digital health context summarized in two overarching categories: (1) Being Heard and (2) Moving Forward. In each of these, two subcategories further delineate the aspects of empowerment, as viewed by these participants: Knowing More and Seeing What They See under Being Heard, and Owning Future Steps and Promoting Future Care under Moving Forward. This work also highlighted an ongoing interconnectedness between the concepts of patient empowerment, engagement, and activation and the need to further articulate the unique aspects of each of these. Conclusions: The results of this study contribute needed patient voice to the ongoing evolution of the concept of patient empowerment. In order to move toward more concrete and accurate measure of patient empowerment and engagement in digital health, there must be further consideration of what patients themselves identify as essential aspects of these complex concepts. This research has revealed relational and informational elements as two key areas of focus in the ongoing evolution of patient empowerment operationalization and measure. ", doi="10.2196/medinform.8828", url="http://medinform.jmir.org/2018/3/e43/", url="http://www.ncbi.nlm.nih.gov/pubmed/30201603" } @Article{info:doi/10.2196/10655, author="Hullmann, E. Stephanie and Keller, A. Stacy and Lynch, O. Dustin and Jenkins, Kelli and Moore, Courtney and Cockrum, Brandon and Wiehe, E. Sarah and Carroll, E. Aaron and Bennett Jr, E. William", title="Phase I of the Detecting and Evaluating Childhood Anxiety and Depression Effectively in Subspecialties (DECADES) Study: Development of an Integrated Mental Health Care Model for Pediatric Gastroenterology", journal="J Participat Med", year="2018", month="Sep", day="10", volume="10", number="3", pages="e10655", keywords="qualitative research", keywords="patient-reported outcomes", keywords="depression", keywords="anxiety", abstract="Background: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential for effective treatment of a wide variety of functional gastrointestinal disorders. Objective: The objective of our study was to determine patient and parent attitudes toward depression, anxiety, and mental health screening during gastroenterology (GI) visits and to determine patient and parent preferences for communication of results and referral to mental health providers after a positive screen. Methods: We augmented standard qualitative group session methods with patient-centered design methods to assess patient and parent preferences. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. Results: Overall, 11 families (11 patients and 14 parents) participated in 2 group sessions. Overall, patients and their parents found integrated mental health care to be acceptable in the subspecialty setting. Patients' primary concerns were for the privacy and confidentiality of their screening results. Patients and their parents emphasized the importance of mental health services not interfering with the GI visit and collaboration between the GI physician, psychologist, and primary care provider. Conclusions: Patients and their families are open to integrated mental health care in the pediatric subspecialty clinic. The next phase of the DECADES study will translate patient and parent preferences into an integrated mental health care system and test its efficacy in the pediatric GI office. ", doi="10.2196/10655", url="http://jopm.jmir.org/2018/3/e10655/" } @Article{info:doi/10.2196/10285, author="Sezgin, Emre and Weiler, Monica and Weiler, Anthony and Lin, Simon", title="Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study", journal="J Med Internet Res", year="2018", month="Sep", day="06", volume="20", number="9", pages="e10285", keywords="chronic disease", keywords="chronic disease management", keywords="digital health", keywords="ecosystem", keywords="qualitative research", keywords="self-management", keywords="transition to independence", keywords="technology-based solutions", abstract="Background: Chronic disease management is critical to quality of life for both teen patients with chronic conditions and their caregivers. However, current literature is largely limited to a specific digital health tool, method, or approach to manage a specific disease. Guiding principles on how to use digital tools to support the transition to independence are rare. Considering the physiological, psychological, and environmental changes that teens experience, the issues surrounding the transition to independence are worth investigating to develop a deeper understanding to inform future strategies for digital interventions. Objective: The purpose of this study was to inform the design of digital health solutions by systematically identifying common challenges among teens and caregivers living with chronic diseases. Methods: Chronically ill teens (n=13) and their caregivers (n=13) were interviewed individually and together as a team. Verbal and projective techniques were used to examine teens' and caregivers' concerns in-depth. The recorded and transcribed responses were thematically analyzed to identify and organize the identified patterns. Results: Teens and their caregivers identified 10 challenges and suggested technological solutions. Recognized needs for social support, access to medical education, symptom monitoring, access to health care providers, and medical supply management were the predominant issues. The envisioned ideal transition included a 5-component solution ecosystem in the transition to independence for teens. Conclusions: This novel study systematically summarizes the challenges, barriers, and technological solutions for teens with chronic conditions and their caregivers as teens transition to independence. A new solution ecosystem based on the 10 identified challenges would guide the design of future implementations to test and validate the effectiveness of the proposed 5-component ecosystem. ", doi="10.2196/10285", url="http://www.jmir.org/2018/9/e10285/", url="http://www.ncbi.nlm.nih.gov/pubmed/30190253" } @Article{info:doi/10.2196/11510, author="Bickmore, W. Timothy and Trinh, Ha and Olafsson, Stefan and O'Leary, K. Teresa and Asadi, Reza and Rickles, M. Nathaniel and Cruz, Ricardo", title="Patient and Consumer Safety Risks When Using Conversational Assistants for Medical Information: An Observational Study of Siri, Alexa, and Google Assistant", journal="J Med Internet Res", year="2018", month="Sep", day="04", volume="20", number="9", pages="e11510", keywords="conversational assistant", keywords="conversational interface", keywords="dialogue system", keywords="medical error", keywords="patient safety", abstract="Background: Conversational assistants, such as Siri, Alexa, and Google Assistant, are ubiquitous and are beginning to be used as portals for medical services. However, the potential safety issues of using conversational assistants for medical information by patients and consumers are not understood. Objective: To determine the prevalence and nature of the harm that could result from patients or consumers using conversational assistants for medical information. Methods: Participants were given medical problems to pose to Siri, Alexa, or Google Assistant, and asked to determine an action to take based on information from the system. Assignment of tasks and systems were randomized across participants, and participants queried the conversational assistants in their own words, making as many attempts as needed until they either reported an action to take or gave up. Participant-reported actions for each medical task were rated for patient harm using an Agency for Healthcare Research and Quality harm scale. Results: Fifty-four subjects completed the study with a mean age of 42 years (SD 18). Twenty-nine (54\%) were female, 31 (57\%) Caucasian, and 26 (50\%) were college educated. Only 8 (15\%) reported using a conversational assistant regularly, while 22 (41\%) had never used one, and 24 (44\%) had tried one ``a few times.`` Forty-four (82\%) used computers regularly. Subjects were only able to complete 168 (43\%) of their 394 tasks. Of these, 49 (29\%) reported actions that could have resulted in some degree of patient harm, including 27 (16\%) that could have resulted in death. Conclusions: Reliance on conversational assistants for actionable medical information represents a safety risk for patients and consumers. Patients should be cautioned to not use these technologies for answers to medical questions they intend to act on without further consultation from a health care provider. ", doi="10.2196/11510", url="http://www.jmir.org/2018/9/e11510/", url="http://www.ncbi.nlm.nih.gov/pubmed/30181110" } @Article{info:doi/10.2196/jmir.9364, author="Lu, Xinyi and Zhang, Runtong and Wu, Wen and Shang, Xiaopu and Liu, Manlu", title="Relationship Between Internet Health Information and Patient Compliance Based on Trust: Empirical Study", journal="J Med Internet Res", year="2018", month="Aug", day="17", volume="20", number="8", pages="e253", keywords="affect-based trust", keywords="cognition-based trust", keywords="internet health information", keywords="patient compliance", keywords="patient-physician relationship", keywords="social information processing theory", keywords="social exchange theory", keywords="structural equation modeling", abstract="Background: The internet has become a major mean for acquiring health information; however, Web-based health information is of mixed quality and may markedly affect patients' health-related behavior and decisions. According to the social information processing theory, patients' trust in their physicians may potentially change due to patients' health-information-seeking behavior. Therefore, it is important to identify the relationship between internet health information and patient compliance from the perspective of trust. Objective: The objective of our study was to investigate the effects of the quality and source of internet health information on patient compliance using an empirical study based on the social information processing theory and social exchange theory. Methods: A Web-based survey involving 336 valid participants was conducted in China. The study included independent variables (internet health information quality and source of information), 2 mediators (cognition-based trust [CBT] and affect-based trust [ABT]), 1 dependent variable (patient compliance), and 3 control variables (gender, age, and job). All variables were measured using multiple-item scales from previously validated instruments, and confirmative factor analysis as well as structural equation modeling was used to test hypotheses. Results: The questionnaire response rate was 77.16\% (375/486), validity rate was 89.6\% (336/375), and reliability and validity were acceptable. We found that the quality and source of internet health information affect patient compliance through the mediation of CBT and ABT. In addition, internet health information quality has a stronger influence on patient compliance than the source of information. However, CBT does not have any direct effect on patient compliance, but it directly affects ABT and then indirectly impacts patient compliance. Therefore, the effect of ABT seems stronger than that of CBT. We found an unexpected, nonsignificant relationship between the source of internet health information and ABT. Conclusions: From patients' perspective, internet health information quality plays a stronger role than its source in impacting their trust in physicians and the consequent compliance with physicians. Therefore, patient compliance can be improved by strengthening the management of internet health information quality. The study findings also suggest that physicians should focus on obtaining health information from health websites, thereby expanding their understanding of patients' Web-based health-information-seeking preferences, and enriching their knowledge structure to show their specialization and reliability in the communication with patients. In addition, the mutual demonstration of care and respect in the communication between physicians and patients is important in promoting patients' ABT in their physicians. ", doi="10.2196/jmir.9364", url="http://www.jmir.org/2018/8/e253/", url="http://www.ncbi.nlm.nih.gov/pubmed/30120087" } @Article{info:doi/10.2196/10779, author="Kloehn, Nicholas and Leroy, Gondy and Kauchak, David and Gu, Yang and Colina, Sonia and Yuan, P. Nicole and Revere, Debra", title="Improving Consumer Understanding of Medical Text: Development and Validation of a New SubSimplify Algorithm to Automatically Generate Term Explanations in English and Spanish", journal="J Med Internet Res", year="2018", month="Aug", day="02", volume="20", number="8", pages="e10779", keywords="text simplification", keywords="health literacy", keywords="natural language processing", keywords="terminology", abstract="Background: While health literacy is important for people to maintain good health and manage diseases, medical educational texts are often written beyond the reading level of the average individual. To mitigate this disconnect, text simplification research provides methods to increase readability and, therefore, comprehension. One method of text simplification is to isolate particularly difficult terms within a document and replace them with easier synonyms (lexical simplification) or an explanation in plain language (semantic simplification). Unfortunately, existing dictionaries are seldom complete, and consequently, resources for many difficult terms are unavailable. This is the case for English and Spanish resources. Objective: Our objective was to automatically generate explanations for difficult terms in both English and Spanish when they are not covered by existing resources. The system we present combines existing resources for explanation generation using a novel algorithm (SubSimplify) to create additional explanations. Methods: SubSimplify uses word-level parsing techniques and specialized medical affix dictionaries to identify the morphological units of a term and then source their definitions. While the underlying resources are different, SubSimplify applies the same principles in both languages. To evaluate our approach, we used term familiarity to identify difficult terms in English and Spanish and then generated explanations for them. For each language, we extracted 400 difficult terms from two different article types (General and Medical topics) balanced for frequency. For English terms, we compared SubSimplify's explanation with the explanations from the Consumer Health Vocabulary, WordNet Synonyms and Summaries, as well as Word Embedding Vector (WEV) synonyms. For Spanish terms, we compared the explanation to WordNet Summaries and WEV Embedding synonyms. We evaluated quality, coverage, and usefulness for the simplification provided for each term. Quality is the average score from two subject experts on a 1-4 Likert scale (two per language) for the synonyms or explanations provided by the source. Coverage is the number of terms for which a source could provide an explanation. Usefulness is the same expert score, however, with a 0 assigned when no explanations or synonyms were available for a term. Results: SubSimplify resulted in quality scores of 1.64 for English (P<.001) and 1.49 for Spanish (P<.001), which were lower than those of existing resources (Consumer Health Vocabulary [CHV]=2.81). However, in coverage, SubSimplify outperforms all existing written resources, increasing the coverage from 53.0\% to 80.5\% in English and from 20.8\% to 90.8\% in Spanish (P<.001). This result means that the usefulness score of SubSimplify (1.32; P<.001) is greater than that of most existing resources (eg, CHV=0.169). Conclusions: Our approach is intended as an additional resource to existing, manually created resources. It greatly increases the number of difficult terms for which an easier alternative can be made available, resulting in greater actual usefulness. ", doi="10.2196/10779", url="http://www.jmir.org/2018/8/e10779/", url="http://www.ncbi.nlm.nih.gov/pubmed/30072361" } @Article{info:doi/10.2196/periop.9463, author="Stolk-Vos, C. Aline and van der Steen, JE Jolet and Drossaert, HC Constance and Braakman-Jansen, Annemarie and Zijlmans, LM Bart and Kranenburg, W. Leonieke and de Korne, F. Dirk", title="A Digital Patient-Led Hospital Checklist for Enhancing Safety in Cataract Surgery: Qualitative Study", journal="JMIR Perioper Med", year="2018", month="Jul", day="16", volume="1", number="2", pages="e3", keywords="patient participation", keywords="checklist", keywords="cataract", keywords="surgery", keywords="patient safety", keywords="handheld computers", keywords="health information management", keywords="health communication", keywords="information technology", abstract="Background: Surgery holds high risk for iatrogenic patient harm. Correct and sufficient communication and information during the surgical process is a root solution for preventing patient harm. Information technology may substantially contribute to engaging patients in this process. Objective: To explore the feasibility of a digital patient-led checklist for cataract surgery, we evaluated the experiences of patients and nurses who have used this novel tool with a focus on use, appreciation, and impact. Methods: A multidisciplinary team, including cataract surgeons, nurses, pharmacists and administrative representatives developed a 19-item digital patient-led checklist for cataract patients who underwent surgery in an ambulatory setting. This ``EYEpad'' checklist was distributed to patients and their companions during their hospital visit via an application on a tablet. It contained necessary information the patient should have received before or during the surgical preparation (8 items), before anesthesia (2 items), and before discharge (9 items). Patients and their companions were invited to actively indicate the information they received, or information discussed with them, by ticking on the EYEpad. Our qualitative research design included semi-structured individual interviews with 17 patients and a focus group involving 6 nurses. The transcripts were analyzed by 2 independent coders using both deductive and inductive coding. Results: All but one of the 17 patients used the EYEpad, occasionally assisted by his or her companion (usually the partner). In several cases, the checklist was completed by the companion. Most patients felt positively about the usability of the EYEpad. Yet, for most of the patients, it was not clear why they received the checklist. Only 4 of them indicated that they understood that the EYEpad was used to determine if there were sufficient and correct information discussed or checked by the nurses. Although most nurses agreed the EYEpad was easy to use and could be a useful tool for improving patient engagement for improving safety, they felt that not all elderly patients were willing or capable of using it and it interfered with the existing surgical process. They also anticipated the need to spend more time explaining the purpose and use of the EYEpad. Conclusions: Our results showed that a digital patient-led checklist is a potentially valid way to increase patient participation in safety improvement efforts, even among elderly patients. It also illustrates the crucial role nurses play in the implementation and diffusion of technological innovations. Increased patient participation will only improve safety when both healthcare workers and patients feel empowered to share responsibility and balance their power. ", doi="10.2196/periop.9463", url="http://periop.jmir.org/2018/2/e3/", url="http://www.ncbi.nlm.nih.gov/pubmed/33401370" } @Article{info:doi/10.2196/10060, author="Hillyer, Clarke Grace and MacLean, A. Sarah and Beauchemin, Melissa and Basch, H. Corey and Schmitt, M. Karen and Segall, Leslie and Kelsen, Moshe and Brogan, L. Frances and Schwartz, K. Gary", title="YouTube Videos as a Source of Information About Clinical Trials: Observational Study", journal="JMIR Cancer", year="2018", month="Jun", day="26", volume="4", number="1", pages="e10060", keywords="clinical trial", keywords="cancer clinical trial", keywords="social media", keywords="internet", keywords="YouTube videos", keywords="health information", abstract="Background: Clinical trials are essential to the advancement of cancer treatment but fewer than 5\% of adult cancer patients enroll in a trial. A commonly cited barrier to participation is the lack of understanding about clinical trials. Objective: Since the internet is a popular source of health-related information and YouTube is the second most visited website in the world, we examined the content of the top 115 YouTube videos about clinical trials to evaluate clinical trial information available through this medium. Methods: YouTube videos posted prior to March 2017 were searched using selected keywords. A snowballing technique was used to identify videos wherein sequential screening of the autofill search results for each set of keywords was conducted. Video characteristics (eg, number of views and video length) were recorded. The content was broadly grouped as related to purpose, phases, design, safety and ethics, and participant considerations. Stepwise multivariable logistic regression analysis was conducted to assess associations between video type (cancer vs noncancer) and video characteristics and content. Results: In total, 115 videos were reviewed. Of these, 46/115 (40.0\%) were cancer clinical trials videos and 69/115 (60.0\%) were noncancer/general clinical trial videos. Most videos were created by health care organizations/cancer centers (34/115, 29.6\%), were oriented toward patients (67/115, 58.3\%) and the general public (68/115, 59.1\%), and were informational (79/115, 68.7\%); altruism was a common theme (31/115, 27.0\%). Compared with noncancer videos, cancer clinical trials videos more frequently used an affective communication style and mentioned the benefits of participation. Cancer clinical trial videos were also much more likely to raise the issue of costs associated with participation (odds ratio [OR] 5.93, 95\% CI 1.15-29.46) and advise patients to communicate with their physician about cancer clinical trials (OR 4.94, 95\% CI 1.39-17.56). Conclusions: Collectively, YouTube clinical trial videos provided information on many aspects of trials; however, individual videos tended to focus on selected topics with varying levels of detail. Cancer clinical trial videos were more emotional in style and positive in tone and provided information on the important topics of cost and communication. Patients are encouraged to verify and supplement YouTube video information in consultations with their health care professionals to obtain a full and accurate picture of cancer clinical trials to make an adequately informed decision about participation. ", doi="10.2196/10060", url="http://cancer.jmir.org/2018/1/e10060/", url="http://www.ncbi.nlm.nih.gov/pubmed/29945855" } @Article{info:doi/10.2196/jmir.9709, author="Hargreaves, Sarah and Bath, A. Peter and Duffin, Suzanne and Ellis, Julie", title="Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis)", journal="J Med Internet Res", year="2018", month="Jun", day="14", volume="20", number="6", pages="e222", keywords="online health forum", keywords="sharing", keywords="breast cancer", keywords="motor neuron disease", keywords="amyotrophic lateral sclerosis", keywords="empathy", abstract="Background: The availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums. Objective: The aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis. Methods: This qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke's six-phase approach and combined to triangulate the analysis. Results: We found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished. Conclusions: Empathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support. ", doi="10.2196/jmir.9709", url="http://www.jmir.org/2018/6/e222/", url="http://www.ncbi.nlm.nih.gov/pubmed/29903695" } @Article{info:doi/10.2196/10774, author="Mirkovic, Jelena and Jessen, Stian and Kristjansdottir, Birna Ol{\"o}f and Krogseth, Tonje and Koricho, Teshome Absera and Ruland, M. Cornelia", title="Developing Technology to Mobilize Personal Strengths in People with Chronic Illness: Positive Codesign Approach", journal="JMIR Formativ Res", year="2018", month="Jun", day="05", volume="2", number="1", pages="e10774", keywords="patient personal strengths", keywords="participatory design", keywords="codesign", keywords="appreciative inquiry", keywords="service design", keywords="positive computing", keywords="positive technology", keywords="chronic disease", keywords="eHealth", keywords="mHealth", keywords="patient requirements", keywords="patient participation", abstract="Background: Emerging research from psychology and the bio-behavioral sciences recognizes the importance of supporting patients to mobilize their personal strengths to live well with chronic illness. Positive technology and positive computing could be used as underlying design approaches to guide design and development of new technology-based interventions for this user group that support mobilizing their personal strengths. Objective: A codesigning workshop was organized with the aim to explore user requirements and ideas for how technology can be used to help people with chronic illness activate their personal strengths in managing their everyday challenges. Methods: Thirty-five participants from diverse backgrounds (patients, health care providers, designers, software developers, and researchers) participated. The workshop combined principles of (1) participatory and service design to enable meaningful participation and collaboration of different stakeholders and (2) an appreciative inquiry methodology to shift participants' attention to positive traits, values, and aspects that are meaningful and life-giving and stimulate participants' creativity, engagement, and collaboration. Utilizing these principles, participants were engaged in group activities to develop ideas for strengths-supportive tools. Each group consisted of 3-8 participants with different backgrounds. All group work was analysed using thematic analyses. Results: Participants were highly engaged in all activities and reported a wide variety of requirements and ideas, including more than 150 personal strength examples, more than 100 everyday challenges that could be addressed by using personal strengths, and a wide range of functionality requirements (eg, social support, strength awareness and reflection, and coping strategies). 6 concepts for strength-supportive tools were created. These included the following: a mobile app to support a person to store, reflect on, and mobilize one's strengths (Strengths treasure chest app); ``empathy glasses'' enabling a person to see a situation from another person's perspective (Empathy Simulator); and a mobile app allowing a person to receive supportive messages from close people in a safe user-controlled environment (Cheering squad app). Suggested design elements for making the tools engaging included: metaphors (eg, trees, treasure island), visualization techniques (eg, dashboards, color coding), and multimedia (eg, graphics). Maintaining a positive focus throughout the tool was an important requirement, especially for feedback and framing of content. Conclusions: Combining participatory, service design, and appreciative inquiry methods were highly useful to engage participants in creating innovative ideas. Building on peoples' core values and positive experiences empowered the participants to expand their horizons from addressing problems and symptoms, which is a very common approach in health care today, to focusing on their capacities and that which is possible, despite their chronic illness. The ideas and user requirements, combined with insights from relevant theories (eg, positive technology, self-management) and evidence from the related literature, are critical to guide the development of future more personalized and strengths-focused self-management tools. ", doi="10.2196/10774", url="http://formative.jmir.org/2018/1/e10774/", url="http://www.ncbi.nlm.nih.gov/pubmed/30684404" } @Article{info:doi/10.2196/jmir.9716, author="Ospina-Pinillos, Laura and Davenport, A. Tracey and Ricci, S. Cristina and Milton, C. Alyssa and Scott, M. Elizabeth and Hickie, B. Ian", title="Developing a Mental Health eClinic to Improve Access to and Quality of Mental Health Care for Young People: Using Participatory Design as Research Methodologies", journal="J Med Internet Res", year="2018", month="May", day="28", volume="20", number="5", pages="e188", keywords="mental health", keywords="community-based participatory research", keywords="eHealth", abstract="Background: Each year, many young Australians aged between 16 and 25 years experience a mental health disorder, yet only a small proportion access services and even fewer receive timely and evidence-based treatments. Today, with ever-increasing access to the Internet and use of technology, the potential to provide all young people with access (24 hours a day, 7 days a week) to the support they require to improve their mental health and well-being is promising. Objective: The aim of this study was to use participatory design (PD) as research methodologies with end users (young people aged between 16 and 25 years and youth health professionals) and our research team to develop the Mental Health eClinic (a Web-based mental health clinic) to improve timely access to, and better quality, mental health care for young people across Australia. Methods: A research and development (R\&D) cycle for the codesign and build of the Mental Health eClinic included several iterative PD phases: PD workshops; translation of knowledge and ideas generated during workshops to produce mockups of webpages either as hand-drawn sketches or as wireframes (simple layout of a webpage before visual design and content is added); rapid prototyping; and one-on-one consultations with end users to assess the usability of the alpha build of the Mental Health eClinic. Results: Four PD workshops were held with 28 end users (young people n=18, youth health professionals n=10) and our research team (n=8). Each PD workshop was followed by a knowledge translation session. At the conclusion of this cycle, the alpha prototype was built, and one round of one-on-one end user consultation sessions was conducted (n=6; all new participants, young people n=4, youth health professionals n=2). The R\&D cycle revealed the importance of five key components for the Mental Health eClinic: a home page with a visible triage system for those requiring urgent help; a comprehensive online physical and mental health assessment; a detailed dashboard of results; a booking and videoconferencing system to enable video visits; and the generation of a personalized well-being plan that includes links to evidence-based, and health professional--recommended, apps and etools. Conclusions: The Mental Health eClinic provides health promotion, triage protocols, screening, assessment, a video visit system, the development of personalized well-being plans, and self-directed mental health support for young people. It presents a technologically advanced and clinically efficient system that can be adapted to suit a variety of settings in which there is an opportunity to connect with young people. This will enable all young people, and especially those currently not able or willing to connect with face-to-face services, to receive best practice clinical services by breaking down traditional barriers to care and making health care more personalized, accessible, affordable, and available. ", doi="10.2196/jmir.9716", url="http://www.jmir.org/2018/5/e188/" } @Article{info:doi/10.2196/jmir.9196, author="Gerard, Macda and Chimowitz, Hannah and Fossa, Alan and Bourgeois, Fabienne and Fernandez, Leonor and Bell, K. Sigall", title="The Importance of Visit Notes on Patient Portals for Engaging Less Educated or Nonwhite Patients: Survey Study", journal="J Med Internet Res", year="2018", month="May", day="24", volume="20", number="5", pages="e191", keywords="patient engagement", keywords="vulnerable populations", keywords="patient portals", keywords="electronic health record", abstract="Background: OpenNotes, a national initiative to share clinicians' visit notes with patients, can improve patient engagement, but effects on vulnerable populations are not known very well. Objective: Our aim is to examine the importance of visit notes to nonwhite and less educated patients. Methods: Patients at an urban academic medical center with an active patient portal account and ?1 available ambulatory visit note over the prior year were surveyed during June 2016 until September 2016. The survey was designed with patients and families and assessed importance of reading notes (scale 0-10) for (1) understanding health conditions, (2) feeling informed about care, (3) understanding the provider's thought process, (4) remembering the plan of care, and (5) making decisions about care. We compared the proportion of patients reporting 9-10 (extremely important) for each item stratified by education level, race/ethnicity, and self-reported health. Principal component analysis and correlation measures supported a summary score for the 5 items (Cronbach alpha=.93). We examined factors associated with rating notes as extremely important to engage in care using logistic regression. Results: Of 24,722 patients, 6913 (27.96\%) completed the survey. The majority (6736/6913, 97.44\%) read at least one note. Among note readers, 74.0\% (727/982) of patients with ?high school education, 70.7\% (130/184) of black patients, and 69.9\% (153/219) of Hispanic/Latino patients reported that notes are extremely important to feel informed about their care. The majority of less educated and nonwhite patients reported notes as extremely important to remember the care plan (62.4\%, 613/982 ?high school education; 62.0\%, 114/184 black patients; and 61.6\%, 135/219 Hispanic/Latino patients) and to make care decisions (62.3\%, 612/982; 59.8\%, 110/184; and 58.5\%, 128/219, respectively, and P<.003 for all comparisons to more educated and white patients, respectively). Among patients with the poorest self-reported health, 65.9\% (499/757) found notes extremely important to be informed and to understand the provider. On multivariable modeling, less educated patients were nearly three times as likely to report notes were extremely important to engage in care compared with the most educated patients (odds ratio [OR] 2.9, 95\% CI 2.4-3.3). Nonwhite patients were twice as likely to report the same compared with white patients (OR 2.0, 95\% CI 1.5-2.7 [black] and OR 2.2, 95\% CI 1.6-2.9 [Hispanic/Latino and Asian], P<.001 for each comparison). Healthier patients, women, older patients, and those who read more notes were more likely to find notes extremely important to engage in care. Conclusions: Less educated and nonwhite patients using the portal each assigned higher importance to reading notes for several health behaviors than highly educated and white patients, and may find transparent notes especially valuable for understanding their health and engaging in their care. Facilitating access to notes may improve engagement in health care for some vulnerable populations who have historically been more challenging to reach. ", doi="10.2196/jmir.9196", url="http://www.jmir.org/2018/5/e191/", url="http://www.ncbi.nlm.nih.gov/pubmed/29793900" } @Article{info:doi/10.2196/jopm.9877, author="Basile, Melissa and Andrews, Johanna and Jacome, Sonia and Zhang, Meng and Kozikowski, Andrzej and Hajizadeh, Negin", title="A Decision Aid to Support Shared Decision Making About Mechanical Ventilation in Severe Chronic Obstructive Pulmonary Disease Patients (InformedTogether): Feasibility Study", journal="J Participat Med", year="2018", month="May", day="14", volume="10", number="2", pages="e7", keywords="Chronic Obstructive Pulmonary Disease", keywords="COPD", keywords="shared decision making", keywords="life support", abstract="Background: Severe Chronic Obstructive Pulmonary Disease patients are often unprepared to make decisions about accepting intubation for respiratory failure. We developed a Web-based decision aid, InformedTogether, to facilitate severe Chronic Obstructive Pulmonary Disease patients' preparation for decision making about whether to accept invasive mechanical ventilation for respiratory failure. Objective: We describe feasibility testing of the InformedTogether decision aid. Methods: Mixed methods, pre- and postintervention feasibility study in outpatient pulmonary and geriatric clinics. Clinicians used InformedTogether with severe Chronic Obstructive Pulmonary Disease patients. Patient-participants completed pre- and postassessments about InformedTogether use. The outcomes measured were the following: feasibility/acceptability, communication (Combined Outcome Measure for Risk Communication [COMRADE], Medical Communication Competency Scale [MCCS], Observing Patient Involvement [OPTION] scales), and effectiveness of InformedTogether on changing patients' knowledge, Decisional Conflict Scale, and motivation. Results: We enrolled 11 clinicians and 38 Chronic Obstructive Pulmonary Disease patients at six sites. Feasibility/acceptability: Clinicians and patients gave positive responses to acceptability questions (mean 74.1/89 max [SD 7.24] and mean 59.63/61 [SD 4.49], respectively). Communication: 96\% of clinicians stated InformedTogether improved communication (modified MCCS mean 44.54/49 [SD 2.97]; mean OPTION score 32.03/48 [SD 9.27]; mean COMRADE Satisfaction 4.31/5.0 [SD 0.58]; and COMRADE Confidence 4.18/5.0 [SD 0.56]). Preference: Eighty percent of patients discussed preferences with their surrogates by 1-month. Effectiveness: Knowledge scores increased significantly after using InformedTogether (mean difference 3.61 [SD 3. 44], P=.001) and Decisional Conflict decreased (mean difference Decisional Conflict Scale pre/post -13.76 [SD 20.39], P=.006). Motivation increased after viewing the decision aid. Conclusions: InformedTogether supports high-quality communication and shared decision making among Chronic Obstructive Pulmonary Disease patients, clinicians, and surrogates. The increased knowledge and opportunity to deliberate and discuss treatment choices after using InformedTogether should lead to improved decision making at the time of critical illness. ", doi="10.2196/jopm.9877", url="http://jopm.jmir.org/2018/2/e7/", url="http://www.ncbi.nlm.nih.gov/pubmed/32461812" } @Article{info:doi/10.2196/jopm.9652, author="Hannon, S. Tamara and Moore, M. Courtney and Cheng, R. Erika and Lynch, O. Dustin and Yazel-Smith, G. Lisa and Claxton, EM Gina and Carroll, E. Aaron and Wiehe, E. Sarah", title="Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test", journal="J Participat Med", year="2018", month="May", day="10", volume="10", number="2", pages="e8", keywords="adolescent health services", keywords="patient-centered care", keywords="research design", keywords="diabetes mellitus, type 1", keywords="self-management", abstract="Background: Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents' thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process. Objective: The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board. Methods: The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution's Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2. Results: Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting. Conclusions: Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus. ", doi="10.2196/jopm.9652", url="http://jopm.jmir.org/2018/2/e8/" } @Article{info:doi/10.2196/jmir.9160, author="Daskivich, Timothy and Luu, Michael and Noah, Benjamin and Fuller, Garth and Anger, Jennifer and Spiegel, Brennan", title="Differences in Online Consumer Ratings of Health Care Providers Across Medical, Surgical, and Allied Health Specialties: Observational Study of 212,933 Providers", journal="J Med Internet Res", year="2018", month="May", day="09", volume="20", number="5", pages="e176", keywords="online ratings", keywords="consumer ratings", keywords="patient satisfaction", keywords="digital health", keywords="telemedicine", abstract="Background: Health care consumers are increasingly using online ratings to select providers, but differences in the distribution of scores across specialties and skew of the data have the potential to mislead consumers about the interpretation of ratings. Objective: The objective of our study was to determine whether distributions of consumer ratings differ across specialties and to provide specialty-specific data to assist consumers and clinicians in interpreting ratings. Methods: We sampled 212,933 health care providers rated on the Healthgrades consumer ratings website, representing 29 medical specialties (n=128,678), 15 surgical specialties (n=72,531), and 6 allied health (nonmedical, nonnursing) professions (n=11,724) in the United States. We created boxplots depicting distributions and tested the normality of overall patient satisfaction scores. We then determined the specialty-specific percentile rank for scores across groupings of specialties and individual specialties. Results: Allied health providers had higher median overall satisfaction scores (4.5, interquartile range [IQR] 4.0-5.0) than physicians in medical specialties (4.0, IQR 3.3-4.5) and surgical specialties (4.2, IQR 3.6-4.6, P<.001). Overall satisfaction scores were highly left skewed (normal between --0.5 and 0.5) for all specialties, but skewness was greatest among allied health providers (--1.23, 95\% CI --1.280 to --1.181), followed by surgical (--0.77, 95\% CI --0.787 to --0.755) and medical specialties (--0.64, 95\% CI --0.648 to --0.628). As a result of the skewness, the percentages of overall satisfaction scores less than 4 were only 23\% for allied health, 37\% for surgical specialties, and 50\% for medical specialties. Percentile ranks for overall satisfaction scores varied across specialties; percentile ranks for scores of 2 (0.7\%, 2.9\%, 0.8\%), 3 (5.8\%, 16.6\%, 8.1\%), 4 (23.0\%, 50.3\%, 37.3\%), and 5 (63.9\%, 89.5\%, 86.8\%) differed for allied health, medical specialties, and surgical specialties, respectively. Conclusions: Online consumer ratings of health care providers are highly left skewed, fall within narrow ranges, and differ by specialty, which precludes meaningful interpretation by health care consumers. Specialty-specific percentile ranks may help consumers to more meaningfully assess online physician ratings. ", doi="10.2196/jmir.9160", url="http://www.jmir.org/2018/5/e176/", url="http://www.ncbi.nlm.nih.gov/pubmed/29743150" } @Article{info:doi/10.2196/medinform.8687, author="Li, Jing and Yazdany, Jinoos and Trupin, Laura and Izadi, Zara and Gianfrancesco, Milena and Goglin, Sarah and Schmajuk, Gabriela", title="Capturing a Patient-Reported Measure of Physical Function Through an Online Electronic Health Record Patient Portal in an Ambulatory Clinic: Implementation Study", journal="JMIR Med Inform", year="2018", month="May", day="09", volume="6", number="2", pages="e31", keywords="electronic health record", keywords="patient-reported outcomes", keywords="rheumatoid arthritis", abstract="Background: Despite significant interest in the collection of patient-reported outcomes to make care more patient-centered, few studies have evaluated implementation efforts to collect patient-reported outcomes from diverse patient populations Objective: We assessed the collection of patient-reported outcomes from rheumatoid arthritis patients in an academic rheumatology clinic, using a paper and an online form through the electronic health record patient portal. Methods: We identified patients seen between 2012-2016 with ?2 face-to-face encounters with a rheumatology provider and International Classification of Diseases codes for RA, ?30 days apart. In 2013, our clinic implemented a paper version of the Patient Reported Outcome Measurement Information System (PROMIS) physical function form that was administered to patients upon their check-in at the clinic. In 2015, an online version of the form became available by way of the electronic health record patient portal to patients with active portal accounts. We compared the proportion of visits with documented PROMIS scores across age, race and ethnicity, and language and examined trends over time using a control chart. Results: We included 1078 patients with rheumatoid arthritis with 7049 in-person encounters at the rheumatology clinic over 4 years, with an average of 168 visits per month. Of the included patients, 80.4\% of patients (867/1078) were female and the mean age was 58 (SD 16) years. The overall PROMIS physical function score documentation increased from 60.4\% (1081/1791) of visits in 2013 to 74.4\% (905/1217) of visits in 2016. Online score documentation increased from 10.0\% (148/1473) in 2015 to 19.3\% (235/1217) in 2016. African American patients were least likely to have a PROMIS physical function score recorded (55/88, 62.5\% compared to 792/990, 80.0\% for other racial or ethnic groups; P<.001). Compared with white patients, both African American and Hispanic patients were less likely to have active online electronic health record portal accounts (44/88, 50\% and 90/157, 57.3\% respectively, compared to 437/521, 83.9\% of white patients; P<.001) and, once activated, less likely to use the online survey (6/44, 13.6\% and 16/90, 17.8\% respectively, compared to 135/437, 30.9\% of white patients; P=.02). There was no significant difference in the proportion of any PROMIS physical function forms recorded between non-English vs English preferred patients. No significant differences were found across age or gender. Conclusions: PROMIS physical function form completion improved overall from 2012-2016 but lagged among racial and ethnic minorities and non-English preferred patients. Future studies should address issues of portal access, enrollment, satisfaction, and persistence and focus on developing PRO implementation strategies that accommodate the needs and preferences of diverse populations. ", doi="10.2196/medinform.8687", url="http://medinform.jmir.org/2018/2/e31/", url="http://www.ncbi.nlm.nih.gov/pubmed/29743158" } @Article{info:doi/10.2196/jmir.9326, author="El Sherif, Reem and Pluye, Pierre and Tho{\"e}r, Christine and Rodriguez, Charo", title="Reducing Negative Outcomes of Online Consumer Health Information: Qualitative Interpretive Study with Clinicians, Librarians, and Consumers", journal="J Med Internet Res", year="2018", month="May", day="04", volume="20", number="5", pages="e169", keywords="consumer health information", keywords="internet", keywords="professional-patient relations", keywords="qualitative research", abstract="Background: There has been an exponential increase in the general population's usage of the internet and of information accessibility; the current demand for online consumer health information (OCHI) is unprecedented. There are multiple studies on internet access and usage, quality of information, and information needs. However, few studies explored negative outcomes of OCHI in detail or from different perspectives, and none examined how these negative outcomes could be reduced. Objective: The aim of this study was to describe negative outcomes associated with OCHI use in primary care and identify potential preventive strategies from consumers', health practitioners', and health librarians' perspectives. Methods: This included a two-stage interpretive qualitative study. In the first stage, we recruited through a social media survey, a purposeful sample of 19 OCHI users who had experienced negative outcomes associated with OCHI. We conducted semistructured interviews and performed a deductive-inductive thematic analysis. The results also informed the creation of vignettes that were used in the next stage. In the second stage, we interviewed a convenient sample of 10 key informants: 7 health practitioners (3 family physicians, 2 nurses, and 2 pharmacists) and 3 health librarians. With the support of the vignettes, we asked participants to elaborate on (1) their experience with patients who have used OCHI and experienced negative outcomes and (2) what strategies they suggest to reduce these outcomes. We performed a deductive-inductive thematic analysis. Results: We found that negative outcomes of OCHI may occur at three levels: internal (such as increased worrying), interpersonal (such as a tension in the patient-clinician relationship), and service-related (such as postponing a clinical encounter). Participants also proposed three types of strategies to reduce the occurrence of these negative outcomes, namely, providing consumers with reliable OCHI, educating consumers on how to assess OCHI websites, and helping consumers present and discuss the OCHI they find with a health professional in their social network or a librarian for instance. Conclusions: We examined negative outcomes associated with using OCHI from five complementary perspectives (consumers, family physicians, pharmacists, nurses, and health librarians). We identified a construct of OCHI use--related tension that included and framed all negative outcomes. This construct has three dimensions (three interdependent levels): internal, interpersonal, and service-related tensions. Future research can focus on the implementation and effectiveness of the proposed strategies, which might contribute to reducing these tensions. ", doi="10.2196/jmir.9326", url="http://www.jmir.org/2018/5/e169/", url="http://www.ncbi.nlm.nih.gov/pubmed/29728350" } @Article{info:doi/10.2196/jmir.9380, author="Lalor, P. John and Wu, Hao and Chen, Li and Mazor, M. Kathleen and Yu, Hong", title="ComprehENotes, an Instrument to Assess Patient Reading Comprehension of Electronic Health Record Notes: Development and Validation", journal="J Med Internet Res", year="2018", month="Apr", day="25", volume="20", number="4", pages="e139", keywords="electronic health records", keywords="health literacy", keywords="psychometrics", keywords="crowdsourcing", abstract="Background: Patient portals are widely adopted in the United States and allow millions of patients access to their electronic health records (EHRs), including their EHR clinical notes. A patient's ability to understand the information in the EHR is dependent on their overall health literacy. Although many tests of health literacy exist, none specifically focuses on EHR note comprehension. Objective: The aim of this paper was to develop an instrument to assess patients' EHR note comprehension. Methods: We identified 6 common diseases or conditions (heart failure, diabetes, cancer, hypertension, chronic obstructive pulmonary disease, and liver failure) and selected 5 representative EHR notes for each disease or condition. One note that did not contain natural language text was removed. Questions were generated from these notes using Sentence Verification Technique and were analyzed using item response theory (IRT) to identify a set of questions that represent a good test of ability for EHR note comprehension. Results: Using Sentence Verification Technique, 154 questions were generated from the 29 EHR notes initially obtained. Of these, 83 were manually selected for inclusion in the Amazon Mechanical Turk crowdsourcing tasks and 55 were ultimately retained following IRT analysis. A follow-up validation with a second Amazon Mechanical Turk task and IRT analysis confirmed that the 55 questions test a latent ability dimension for EHR note comprehension. A short test of 14 items was created along with the 55-item test. Conclusions: We developed ComprehENotes, an instrument for assessing EHR note comprehension from existing EHR notes, gathered responses using crowdsourcing, and used IRT to analyze those responses, thus resulting in a set of questions to measure EHR note comprehension. Crowdsourced responses from Amazon Mechanical Turk can be used to estimate item parameters and select a subset of items for inclusion in the test set using IRT. The final set of questions is the first test of EHR note comprehension. ", doi="10.2196/jmir.9380", url="http://www.jmir.org/2018/4/e139/", url="http://www.ncbi.nlm.nih.gov/pubmed/29695372" } @Article{info:doi/10.2196/jmir.9391, author="Kim, Sujin and Sinn, Donghee and Syn, Yeon Sue", title="Analysis of College Students' Personal Health Information Activities: Online Survey", journal="J Med Internet Res", year="2018", month="Apr", day="20", volume="20", number="4", pages="e132", keywords="health records, personal", keywords="health information management", keywords="student health services", abstract="Background: With abundant personal health information at hand, individuals are faced with a critical challenge in evaluating the informational value of health care records to keep useful information and discard that which is determined useless. Young, healthy college students who were previously dependents of adult parents or caregivers are less likely to be concerned with disease management. Personal health information management (PHIM) is a special case of personal information management (PIM) that is associated with multiple interactions among varying stakeholders and systems. However, there has been limited evidence to understand informational or behavioral underpinning of the college students' PHIM activities, which can influence their health in general throughout their lifetime. Objective: This study aimed to investigate demographic and academic profiles of college students with relevance to PHIM activities. Next, we sought to construct major PHIM-related activity components and perceptions among college students. Finally, we sought to discover major factors predicting core PHIM activities among college students we sampled. Methods: A Web survey was administered to collect responses about PHIM behaviors and perceptions among college students from the University of Kentucky from January through March 2017. A total of 1408 college students were included in the analysis. PHIM perceptions, demographics, and academic variations were used as independent variables to predict diverse PHIM activities using a principal component analysis (PCA) and hierarchical regression analyses (SPSS v.24, IBM Corp, Armonk, NY, USA). Results: Majority of the participants were female (956/1408, 67.90\%), and the age distribution of this population included an adequate representation of college students of all ages. The most preferred health information resources were family (612/1408, 43.47\%), health care professionals (366/1408, 26.00\%), friends (27/1408, 1.91\%), and the internet (157/1408, 11.15\%). Organizational or curatorial activities such as Arranging, Labeling, Categorizing, and Discarding were rated low (average=3.21, average=3.02, average=2.52, and average=2.42, respectively). The PCA results suggested 3 components from perception factors labeled as follows: Assistance (alpha=.85), Awareness (alpha=.716), and Difficulty (alpha=.558). Overall, the Demographics and Academics variables were not significant in predicting dependent variables such as Labeling, Categorizing, Health Education Materials, and Discarding, whereas they were significant for other outcome variables such as Sharing, Collecting, Knowing, Insurance Information, Using, and Owning. Conclusions: College years are a significant time for students to learn decision-making skills for maintaining information, a key aspect of health records, as well as for educators to provide appropriate educational and decision aids in the environment of learning as independent adults. Our study will contribute to better understand knowledge about specific skills and perceptions for college students' practice of effective PHIM throughout their lives. ", doi="10.2196/jmir.9391", url="http://www.jmir.org/2018/4/e132/", url="http://www.ncbi.nlm.nih.gov/pubmed/29678798" } @Article{info:doi/10.2196/jmir.7766, author="Featherall, Joseph and Lapin, Brittany and Chaitoff, Alexander and Havele, A. Sonia and Thompson, Nicolas and Katzan, Irene", title="Characterization of Patient Interest in Provider-Based Consumer Health Information Technology: Survey Study", journal="J Med Internet Res", year="2018", month="Apr", day="19", volume="20", number="4", pages="e128", keywords="consumer health informatics", keywords="medical informatics", keywords="self efficacy", keywords="self-management", keywords="telemedicine", keywords="patient-centered care", abstract="Background: Consumer health information technology can improve patient engagement in their health care and assist in navigating the complexities of health care delivery. However, the consumer health information technology offerings of health systems are often driven by provider rather than patient perspectives and inadequately address patient needs, thus limiting their adoption by patients. Consideration given to patients as stakeholders in the development of such technologies may improve adoption, efficacy, and consumer health information technology resource allocation. Objective: The aims of this paper were to measure patient interest in different health system consumer health information technology apps and determine the influence of patient characteristics on consumer health information technology interest. Methods: Patients seen at the Cleveland Clinic Neurological Institute were electronically surveyed on their interest in using different consumer health information technology apps. A self-efficacy scale, Patient Health Questionnaire-9 depression screen, and EuroQol 5 dimensions health-related quality of life scale were also completed by patients. Logistic regression was used to determine the influence of patient characteristics on interest in consumer health information technology in the categories of self-management, education, and communication. Results: The majority of 3852 patient respondents had an interest in all technology categories assessed in the survey. The highest interest was in apps that allow patients to ask questions of providers (3476/3852, 90.24\%) and to schedule appointments (3211/3839, 83.64\%). Patient interest in consumer health information technology was significantly associated with greater depression symptoms, worse quality of life, greater health self-efficacy, and smartphone ownership (P<.001 for all listed). Conclusions: Patients should be viewed as active stakeholders in consumer health information technology development and their perspectives should consistently guide development efforts. Health systems should consider focusing on consumer health information technologies that assist patients in scheduling appointments and asking questions of providers. Patients with depression should also be considered for targeted consumer health information technology implementation. Health self-efficacy is a valid predictor of consumer health information technology interest and may play a role in the utilization of consumer health information technologies. Health systems, broadly, should put forth greater effort to understand the needs and interests of patients in the consumer health information technology development process. Consumer health information technology design and implementation may be improved by understanding which technologies patients want. ", doi="10.2196/jmir.7766", url="http://www.jmir.org/2018/4/e128/", url="http://www.ncbi.nlm.nih.gov/pubmed/29674312" } @Article{info:doi/10.2196/jmir.9457, author="Wikman, Anna and Kukkola, Laura and B{\"o}rjesson, Helene and Cernvall, Martin and Woodford, Joanne and Gr{\"o}nqvist, Helena and von Essen, Louise", title="Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach", journal="J Med Internet Res", year="2018", month="Apr", day="18", volume="20", number="4", pages="e133", keywords="cognitive therapy", keywords="psychology, clinical", keywords="e-therapy", keywords="community participation", keywords="Sweden", abstract="Background: Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child's cancer disease after end of treatment. Objective: One aim of this study was to develop an internet-administered, cognitive behavior therapy--based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention. Methods: Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection. Results: A 10-week, internet-administered, cognitive behavior therapy--based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects. Conclusions: To the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population. ", doi="10.2196/jmir.9457", url="http://www.jmir.org/2018/4/e133/", url="http://www.ncbi.nlm.nih.gov/pubmed/29669710" } @Article{info:doi/10.2196/mhealth.7708, author="AlJaberi, Hana", title="Social Interaction Needs and Entertainment Approaches to Pregnancy Well-Being in mHealth Technology Design for Low-Income Transmigrant Women: Qualitative Codesign Study", journal="JMIR Mhealth Uhealth", year="2018", month="Apr", day="13", volume="6", number="4", pages="e61", keywords="mHealth", keywords="mobile health", keywords="participatory design", keywords="pregnancy", keywords="Caribbean", keywords="immigrant women", abstract="Background: Low-income Caribbean transmigrant women face unique health challenges during pregnancy that set forth multidimensional implications for the design of mobile health (mHealth). Acknowledgment of the unique health needs of low-income Caribbean immigrant women in the United States and what that entails regarding technology design remains rarely examined in the literature of mHealth technologies. Objective: The goal of this study was to reveal the needs and gaps in mHealth interventions for pregnant immigrant women not yet realized in this field. These understandings reveal design opportunities for mHealth. Methods: The use of the qualitative participatory action research approach of codesign workshops in this study resulted in design solutions by the participants after reflecting on their earlier focus group discussions. The highlights are not the resulting designs per se but rather the inferences derived from the researcher reflecting on these designs. Results: The designs exposed two themes relevant to this paper. First, the participants desired the inclusion and rebuilding of social and organizational relationships in mHealth. The resulting designs formulate an understanding of the women's health-related social support needs and how technology can facilitate them. Second, the participants wanted entertainment with an element of social participation incorporated in mHealth pregnancy management interventions. This brings attention to the role entertainment can add to the impact mHealth can deliver for pregnancy well-being. Conclusions: The study concluded with an examination of social and entertainment design implications that reveal pregnant immigrant women's virtual health-related sharing habits, choice of sharing interaction scenarios during pregnancy (eg, local, long distance, one-way, two-way, and many-many), and choice of sharing media (eg, text, voice, and video). Additionally, the study revealed exclusions to social sharing capabilities in health technologies for these women. ", doi="10.2196/mhealth.7708", url="http://mhealth.jmir.org/2018/4/e61/", url="http://www.ncbi.nlm.nih.gov/pubmed/29653919" } @Article{info:doi/10.2196/mhealth.9620, author="Park, Rang Yu and Lee, Yura and Kim, Young Ji and Kim, Jeonghoon and Kim, Reong Hae and Kim, Young-Hak and Kim, Sung Woo and Lee, Jae-Ho", title="Managing Patient-Generated Health Data Through Mobile Personal Health Records: Analysis of Usage Data", journal="JMIR Mhealth Uhealth", year="2018", month="Apr", day="09", volume="6", number="4", pages="e89", keywords="personal health record", keywords="mobile health", keywords="patient engagement", keywords="patient-generated health data", keywords="health records, personal", keywords="telemedicine", keywords="patient participation", abstract="Background: Personal health records (PHRs) and mHealth apps are considered essential tools for patient engagement. Mobile PHRs (mPHRs) can be a platform to integrate patient-generated health data (PGHD) and patients' medical information. However, in previous studies, actual usage data and PGHD from mPHRs have not been able to adequately represent patient engagement. Objective: By analyzing 5 years' PGHD from an mPHR system developed by a tertiary hospital in South Korea, we aimed to evaluate how PGHD were managed and identify issues in PGHD management based on actual usage data. Additionally, we analyzed how to improve patient engagement with mPHRs by analyzing the actively used services and long-term usage patterns. Methods: We gathered 5 years (December 2010 to December 2015) of log data from both hospital patients and general users of the app. We gathered data from users who entered PGHD on body weight, blood pressure (BP), blood glucose levels, 10-year cardiovascular disease (CVD) risk, metabolic syndrome risk, medication schedule, insulin, and allergy. We classified users according to whether they were patients or general users based on factors related to continuous use (?28 days for weight, BP, and blood glucose, and ?180 days for CVD and metabolic syndrome), and analyzed the patients' characteristics. We compared PGHD entry counts and the proportion of continuous users for each PGHD by user type. Results: The total number of mPHR users was 18,265 (patients: n=16,729, 91.59\%) with 3620 users having entered weight, followed by BP (n=1625), blood glucose (n=1374), CVD (n=764), metabolic syndrome (n=685), medication (n=252), insulin (n=72), and allergy (n=61). Of those 18,256 users, 3812 users had at least one PGHD measurement, of whom 175 used the PGHD functions continuously (patients: n=142, 81.14\%); less than 1\% of the users had used it for more than 4 years. Except for weight, BP, blood glucose, CVD, and metabolic syndrome, the number of PGHD records declined. General users' continuous use of PGHD was significantly higher than that of patients in the blood glucose (P<.001) and BP (P=.03) functions. Continuous use of PGHD in health management (BP, blood glucose, and weight) was significantly greater among older users (P<.001) and men (P<.001). In health management (BP, weight, and blood glucose), overall chronic disease and continuous use of PGHD were not statistically related (P=.08), but diabetes (P<.001) and cerebrovascular diseases (P=.03) were significant. Conclusions: Although a small portion of users managed PGHD continuously, PGHD has the potential to be useful in monitoring patient health. To realize the potential, specific groups of continuous users must be identified, and the PGHD service must target them. Further evaluations for the clinical application of PGHD, feedback regarding user interfaces, and connections with wearable devices are needed. ", doi="10.2196/mhealth.9620", url="http://mhealth.jmir.org/2018/4/e89/", url="http://www.ncbi.nlm.nih.gov/pubmed/29631989" } @Article{info:doi/10.2196/ijmr.9350, author="McGrath, J. Robert and Priestley, Lewis Jennifer and Zhou, Yiyun and Culligan, J. Patrick", title="The Validity of Online Patient Ratings of Physicians: Analysis of Physician Peer Reviews and Patient Ratings", journal="Interact J Med Res", year="2018", month="Apr", day="09", volume="7", number="1", pages="e8", keywords="physician review websites", keywords="online patient ratings", keywords="physician peer review", abstract="Background: Information from ratings sites are increasingly informing patient decisions related to health care and the selection of physicians. Objective: The current study sought to determine the validity of online patient ratings of physicians through comparison with physician peer review. Methods: We extracted 223,715 reviews of 41,104 physicians from 10 of the largest cities in the United States, including 1142 physicians listed as ``America's Top Doctors'' through physician peer review. Differences in mean online patient ratings were tested for physicians who were listed and those who were not. Results: Overall, no differences were found between the online patient ratings based upon physician peer review status. However, statistical differences were found for four specialties (family medicine, allergists, internal medicine, and pediatrics), with online patient ratings significantly higher for those physicians listed as a peer-reviewed ``Top Doctor'' versus those who were not. Conclusions: The results of this large-scale study indicate that while online patient ratings are consistent with physician peer review for four nonsurgical, primarily in-office specializations, patient ratings were not consistent with physician peer review for specializations like anesthesiology. This result indicates that the validity of patient ratings varies by medical specialization. ", doi="10.2196/ijmr.9350", url="http://www.i-jmr.org/2018/1/e8/", url="http://www.ncbi.nlm.nih.gov/pubmed/29631992" } @Article{info:doi/10.2196/jmir.9110, author="Swinkels, Sophia Ilse Catharina and Huygens, Johanna Martine Wilhelmina and Schoenmakers, M. Tim and Oude Nijeweme-D'Hollosy, Wendy and van Velsen, Lex and Vermeulen, Joan and Schoone-Harmsen, Marian and Jansen, JFM Yvonne and van Schayck, CP Onno and Friele, Roland and de Witte, Luc", title="Lessons Learned From a Living Lab on the Broad Adoption of eHealth in Primary Health Care", journal="J Med Internet Res", year="2018", month="Mar", day="29", volume="20", number="3", pages="e83", keywords="telemedicine", keywords="primary health care", keywords="implementation", keywords="patient involvement", keywords="entrepreneurship", keywords="health personnel", keywords="policy makers", abstract="Background: Electronic health (eHealth) solutions are considered to relieve current and future pressure on the sustainability of primary health care systems. However, evidence of the effectiveness of eHealth in daily practice is missing. Furthermore, eHealth solutions are often not implemented structurally after a pilot phase, even if successful during this phase. Although many studies on barriers and facilitators were published in recent years, eHealth implementation still progresses only slowly. To further unravel the slow implementation process in primary health care and accelerate the implementation of eHealth, a 3-year Living Lab project was set up. In the Living Lab, called eLabEL, patients, health care professionals, small- and medium-sized enterprises (SMEs), and research institutes collaborated to select and integrate fully mature eHealth technologies for implementation in primary health care. Seven primary health care centers, 10 SMEs, and 4 research institutes participated. Objective: This viewpoint paper aims to show the process of adoption of eHealth in primary care from the perspective of different stakeholders in a qualitative way. We provide a real-world view on how such a process occurs, including successes and failures related to the different perspectives. Methods: Reflective and process-based notes from all meetings of the project partners, interview data, and data of focus groups were analyzed systematically using four theoretical models to study the adoption of eHealth in primary care. Results: The results showed that large-scale implementation of eHealth depends on the efforts of and interaction and collaboration among 4 groups of stakeholders: patients, health care professionals, SMEs, and those responsible for health care policy (health care insurers and policy makers). These stakeholders are all acting within their own contexts and with their own values and expectations. We experienced that patients reported expected benefits regarding the use of eHealth for self-management purposes, and health care professionals stressed the potential benefits of eHealth and were interested in using eHealth to distinguish themselves from other care organizations. In addition, eHealth entrepreneurs valued the collaboration among SMEs as they were not big enough to enter the health care market on their own and valued the collaboration with research institutes. Furthermore, health care insurers and policy makers shared the ambition and need for the development and implementation of an integrated eHealth infrastructure. Conclusions: For optimal and sustainable use of eHealth, patients should be actively involved, primary health care professionals need to be reinforced in their management, entrepreneurs should work closely with health care professionals and patients, and the government needs to focus on new health care models stimulating innovations. Only when all these parties act together, starting in local communities with a small range of eHealth tools, the potential of eHealth will be enforced. ", doi="10.2196/jmir.9110", url="http://www.jmir.org/2018/3/e83/", url="http://www.ncbi.nlm.nih.gov/pubmed/29599108" } @Article{info:doi/10.2196/jmir.8889, author="Zikmund-Fisher, J. Brian and Scherer, M. Aaron and Witteman, O. Holly and Solomon, B. Jacob and Exe, L. Nicole and Fagerlin, Angela", title="Effect of Harm Anchors in Visual Displays of Test Results on Patient Perceptions of Urgency About Near-Normal Values: Experimental Study", journal="J Med Internet Res", year="2018", month="Mar", day="26", volume="20", number="3", pages="e98", keywords="decision making", keywords="education of patients", keywords="electronic health record", keywords="computer graphics", keywords="clinical laboratory information systems", abstract="Background: Patient-facing displays of laboratory test results typically provide patients with one reference point (the ``standard range''). Objective: To test the effect of including an additional harm anchor reference point in visual displays of laboratory test results, which indicates how far outside of the standard range values would need to be in order to suggest substantial patient risk. Methods: Using a demographically diverse, online sample, we compared the reactions of 1618 adults in the United States who viewed visual line displays that included both standard range and harm anchor reference points (``Many doctors are not concerned until here'') to displays that included either (1) only a standard range, (2) standard range plus evaluative categories (eg, ``borderline high''), or (3) a color gradient showing degree of deviation from the standard range. Results: Providing the harm anchor reference point significantly reduced perceived urgency of close-to-normal alanine aminotransferase and creatinine results (P values <.001) but not generally for platelet count results. Notably, display type did not significantly alter perceptions of more extreme results in potentially harmful ranges. Harm anchors also substantially reduced the number of participants who wanted to contact their doctor urgently or go to the hospital about these test results. Conclusions: Presenting patients with evaluative cues regarding when test results become clinically concerning can reduce the perceived urgency of out-of-range results that do not require immediate clinical action. ", doi="10.2196/jmir.8889", url="http://www.jmir.org/2018/3/e98/", url="http://www.ncbi.nlm.nih.gov/pubmed/29581088" } @Article{info:doi/10.2196/cancer.8993, author="Alpert, M. Jordan and Morris, B. Bonny and Thomson, D. Maria and Matin, Khalid and Brown, F. Richard", title="Implications of Patient Portal Transparency in Oncology: Qualitative Interview Study on the Experiences of Patients, Oncologists, and Medical Informaticists", journal="JMIR Cancer", year="2018", month="Mar", day="26", volume="4", number="1", pages="e5", keywords="qualitative research", keywords="electronic health record", keywords="patient portals", keywords="physician patient relationship", keywords="health communication", abstract="Background: Providing patients with unrestricted access to their electronic medical records through patient portals has impacted patient-provider communication and patients' personal health knowledge. However, little is known about how patient portals are used in oncology. Objective: The aim of this study was to understand attitudes of the portal's adoption for oncology and to identify the advantages and disadvantages of using the portal to communicate and view medical information. Methods: In-depth semistructured interviews were conducted with 60 participants: 35 patients, 13 oncologists, and 12 medical informaticists. Interviews were recorded, transcribed, and thematically analyzed to identify critical incidents and general attitudes encountered by participants. Results: Two primary themes were discovered: (1) implementation practices influence attitudes, in which the decision-making and execution process of introducing portals throughout the hospital did not include the input of oncologists. Lack of oncologists' involvement led to a lack of knowledge about portal functionality, such as not knowing the time period when test results would be disclosed to patients; (2) perceptions of portals as communication tools varies by user type, meaning that each participant group (patients, oncologists, and medical informaticists) had varied opinions about how the portal should be used to transmit and receive information. Oncologists and medical informaticists had difficulty understanding one another's culture and communication processes in their fields, while patients had preferences for how they would like to receive communication, but it largely depended upon the type of test being disclosed. Conclusions: The majority of patients (54\%, 19/35) who participated in this study viewed lab results or scan reports via the portal before being contacted by a clinician. Most were relatively comfortable with this manner of disclosure but still preferred face-to-face or telephone communication. Findings from this study indicate that portal education is needed for both patients and oncologists, especially when portals are implemented across entire health systems since highly specialized areas of medicine may have unique needs and uses. Patient portals in oncology can potentially alter the way diagnoses are delivered and how patients and oncologists communicate. Therefore, communication about the portal should be established during initial consultations so patients can decide whether they want to be informed in such a manner. ", doi="10.2196/cancer.8993", url="http://cancer.jmir.org/2018/1/e5/", url="http://www.ncbi.nlm.nih.gov/pubmed/29581090" } @Article{info:doi/10.2196/mhealth.8849, author="McWilliams, Andrew and Reeves, Kelly and Shade, Lindsay and Burton, Elizabeth and Tapp, Hazel and Courtlandt, Cheryl and Gunter, Andrew and Dulin, F. Michael", title="Patient and Family Engagement in the Design of a Mobile Health Solution for Pediatric Asthma: Development and Feasibility Study", journal="JMIR Mhealth Uhealth", year="2018", month="Mar", day="22", volume="6", number="3", pages="e68", keywords="engagement", keywords="pediatric asthma", keywords="shared decision-making", keywords="health information technology", abstract="Background: Asthma is a highly prevalent, chronic disease with significant morbidity, cost, and disparities in health outcomes. While adherence to asthma treatment guidelines can improve symptoms and decrease exacerbations, most patients receive care that is not guideline-based. New approaches that incorporate shared decision-making (SDM) and health information technology (IT) are needed to positively impact asthma management. Despite the promise of health IT to improve efficiency and outcomes in health care, new IT solutions frequently suffer from a lack of widespread adoption and do not achieve desired results, as a consequence of not involving end-users in design. Objective: To describe a case study of a pediatric asthma SDM health IT solution's development and demonstrate a methodology for engaging actual patients and families in IT development. Perspectives are shared from the vantage point of the research team and a parent of a child with asthma, who participated on the development team. Methods: We adapted user-centric design principles to engage actual users across three main development phases: project initiation, ideation, and usability testing. To facilitate the necessary level of user engagement, our approach included: (1) a Development Workgroup consisting of patients, caregivers, and providers who met regularly with the research team; and (2) ``real-world users'' consisting of patients, caregivers, and providers recruited from a variety of care locations, including safety-net clinics. Results: Using this methodology, we successful partnered with asthma patients and families to create an interactive, digital solution called Carolinas Asthma Coach. Carolinas Asthma Coach incorporates SDM principles to elicit patient information, including goals and preferences, and provides health-literate, tailored education with specific guideline-based recommendations for patients and their providers. Of the patients, caregivers, and providers surveyed, 100\% (n=60) said they would recommend Carolinas Asthma Coach to a friend or colleague. Qualitative feedback from users provided support for the usability and engaging nature of the app. Conclusions: This project demonstrates the feasibility and benefits of deploying user-centric design methods that engage real patients and caregivers throughout the health IT design process. ", doi="10.2196/mhealth.8849", url="http://mhealth.jmir.org/2018/3/e68/", url="http://www.ncbi.nlm.nih.gov/pubmed/29567637" } @Article{info:doi/10.2196/jmir.7541, author="van Kasteren, Yasmin and Freyne, Jill and Hussain, Sazzad M.", title="Total Knee Replacement and the Effect of Technology on Cocreation for Improved Outcomes and Delivery: Qualitative Multi-Stakeholder Study", journal="J Med Internet Res", year="2018", month="Mar", day="20", volume="20", number="3", pages="e95", keywords="arthroplasty", keywords="replacement", keywords="osteoarthritis", keywords="patient participation", keywords="consumer health informatics", keywords="technology", keywords="telemedicine", keywords="rehabilitation", keywords="self-care", keywords="exercise therapy", keywords="human computer interaction", keywords="wearables", abstract="Background: The growth in patient-centered care delivery combined with the rising costs of health care have perhaps not unsurprisingly been matched by a proliferation of patient-centered technology. This paper takes a multistakeholder approach to explore how digital technology can support the cocreation of value between patients and their care teams in the delivery of total knee replacement (TKR) surgery, an increasingly common procedure to return mobility and relieve pain for people suffering from osteoarthritis. Objective: The aim of this study was to investigate communications and interactions between patients and care teams in the delivery of TKR to identify opportunities for digital technology to add value to TKR health care service by enhancing the cocreation of value. Methods: A multistakeholder qualitative study of user needs was conducted with Australian stakeholders (N=34): surgeons (n=12), physiotherapists (n=3), patients (n=11), and general practitioners (n=8). Data from focus groups and interviews were recorded, transcribed, and analyzed using thematic analysis. Results: Encounters between patients and their care teams are information-rich but time-poor. Results showed seven different stages of the TKR journey that starts with referral to a surgeon and ends with a postoperative review at 12 months. Each stage of the journey has different information and communication challenges that can be enhanced by digital technology. Opportunities for digital technology include improved waiting list management, supporting and reinforcing patient retention and recall of information, motivating and supporting rehabilitation, improving patient preparation for hospital stay, and reducing risks and anxiety associated with postoperative wound care. Conclusions: Digital technology can add value to patients' care team communications by enhancing information flow, assisting patient recall and retention of information, improving accessibility and portability of information, tailoring information to individual needs, and by providing patients with tools to engage in their own health care management. For care teams, digital technology can add value through early detection of postoperative complications, proactive surveillance of health data for postoperative patients and patients on waiting lists, higher compliance with rehabilitation programs, and reduced length of stay. Digital technology has the potential to improve patient satisfaction and outcomes, as well as potentially reduce hospital length of stay and the burden of disease associated with postoperative morbidity. ", doi="10.2196/jmir.7541", url="http://www.jmir.org/2018/3/e95/", url="http://www.ncbi.nlm.nih.gov/pubmed/29559424" } @Article{info:doi/10.2196/jmir.9222, author="Abdellaoui, Redhouane and Foulqui{\'e}, Pierre and Texier, Nathalie and Faviez, Carole and Burgun, Anita and Sch{\"u}ck, St{\'e}phane", title="Detection of Cases of Noncompliance to Drug Treatment in Patient Forum Posts: Topic Model Approach", journal="J Med Internet Res", year="2018", month="Mar", day="14", volume="20", number="3", pages="e85", keywords="medication adherence", keywords="compliance", keywords="infodemiology", keywords="social media", keywords="text mining", keywords="depression", keywords="psychosis", keywords="peer-to-peer support", keywords="virtual community", abstract="Background: Medication nonadherence is a major impediment to the management of many health conditions. A better understanding of the factors underlying noncompliance to treatment may help health professionals to address it. Patients use peer-to-peer virtual communities and social media to share their experiences regarding their treatments and diseases. Using topic models makes it possible to model themes present in a collection of posts, thus to identify cases of noncompliance. Objective: The aim of this study was to detect messages describing patients' noncompliant behaviors associated with a drug of interest. Thus, the objective was the clustering of posts featuring a homogeneous vocabulary related to nonadherent attitudes. Methods: We focused on escitalopram and aripiprazole used to treat depression and psychotic conditions, respectively. We implemented a probabilistic topic model to identify the topics that occurred in a corpus of messages mentioning these drugs, posted from 2004 to 2013 on three of the most popular French forums. Data were collected using a Web crawler designed by Kappa Sant{\'e} as part of the Detec't project to analyze social media for drug safety. Several topics were related to noncompliance to treatment. Results: Starting from a corpus of 3650 posts related to an antidepressant drug (escitalopram) and 2164 posts related to an antipsychotic drug (aripiprazole), the use of latent Dirichlet allocation allowed us to model several themes, including interruptions of treatment and changes in dosage. The topic model approach detected cases of noncompliance behaviors with a recall of 98.5\% (272/276) and a precision of 32.6\% (272/844). Conclusions: Topic models enabled us to explore patients' discussions on community websites and to identify posts related with noncompliant behaviors. After a manual review of the messages in the noncompliance topics, we found that noncompliance to treatment was present in 6.17\% (276/4469) of the posts. ", doi="10.2196/jmir.9222", url="http://www.jmir.org/2018/3/e85/", url="http://www.ncbi.nlm.nih.gov/pubmed/29540337" } @Article{info:doi/10.2196/jmir.8801, author="Hogan, P. Timothy and Luger, M. Tana and Volkman, E. Julie and Rocheleau, Mary and Mueller, Nora and Barker, M. Anna and Nazi, M. Kim and Houston, K. Thomas and Bokhour, G. Barbara", title="Patient Centeredness in Electronic Communication: Evaluation of Patient-to-Health Care Team Secure Messaging", journal="J Med Internet Res", year="2018", month="Mar", day="08", volume="20", number="3", pages="e82", keywords="health communication", keywords="electronic mail", keywords="patient portals", keywords="patient-centered care", keywords="veterans", abstract="Background: As information and communication technology is becoming more widely implemented across health care organizations, patient-provider email or asynchronous electronic secure messaging has the potential to support patient-centered communication. Within the medical home model of the Veterans Health Administration (VA), secure messaging is envisioned as a means to enhance access and strengthen the relationships between veterans and their health care team members. However, despite previous studies that have examined the content of electronic messages exchanged between patients and health care providers, less research has focused on the socioemotional aspects of the communication enacted through those messages. Objective: Recognizing the potential of secure messaging to facilitate the goals of patient-centered care, the objectives of this analysis were to not only understand why patients and health care team members exchange secure messages but also to examine the socioemotional tone engendered in these messages. Methods: We conducted a cross-sectional coding evaluation of a corpus of secure messages exchanged between patients and health care team members over 6 months at 8 VA facilities. We identified patients whose medical records showed secure messaging threads containing at least 2 messages and compiled a random sample of these threads. Drawing on previous literature regarding the analysis of asynchronous, patient-provider electronic communication, we developed a coding scheme comprising a series of a priori patient and health care team member codes. Three team members tested the scheme on a subset of the messages and then independently coded the sample of messaging threads. Results: Of the 711 messages coded from the 384 messaging threads, 52.5\% (373/711) were sent by patients and 47.5\% (338/711) by health care team members. Patient and health care team member messages included logistical content (82.6\%, 308/373 vs 89.1\%, 301/338), were neutral in tone (70.2\%, 262/373 vs 82.0\%, 277/338), and respectful in nature (25.7\%, 96/373 vs 33.4\%, 113/338). Secure messages from health care team members sometimes appeared hurried (25.4\%, 86/338) but also displayed friendliness or warmth (18.9\%, 64/338) and reassurance or encouragement (18.6\%, 63/338). Most patient messages involved either providing or seeking information; however, the majority of health care team member messages involved information provision in response to patient questions. Conclusions: This evaluation is an important step toward understanding the content and socioemotional tone that is part of the secure messaging exchanges between patients and health care team members. Our findings were encouraging; however, there are opportunities for improvement. As health care organizations seek to supplement traditional encounters with virtual care, they must reexamine their use of secure messaging, including the patient centeredness of the communication, and the potential for more proactive use by health care team members. ", doi="10.2196/jmir.8801", url="http://www.jmir.org/2018/3/e82/", url="http://www.ncbi.nlm.nih.gov/pubmed/29519774" } @Article{info:doi/10.2196/jmir.9003, author="Wu, Tailai and Deng, Zhaohua and Feng, Zhanchun and Gaskin, J. Darrell and Zhang, Donglan and Wang, Ruoxi", title="The Effect of Doctor-Consumer Interaction on Social Media on Consumers' Health Behaviors: Cross-Sectional Study", journal="J Med Internet Res", year="2018", month="Feb", day="28", volume="20", number="2", pages="e73", keywords="physician patient relationships", keywords="health behavior", keywords="social media", keywords="social theory", keywords="psychological theory", keywords="medical informatics", abstract="Background: Both doctors and consumers have engaged in using social media for health purposes. Social media has changed traditional one-to-one communication between doctors and patients to many-to-many communication between doctors and consumers. However, little is known about the effect of doctor-consumer interaction on consumers' health behaviors. Objective: The aim of this study was to investigate how doctor-consumer interaction in social media affects consumers' health behaviors. Methods: On the basis of professional-client interaction theory and social cognitive theory, we propose that doctor-consumer interaction can be divided into instrumental interaction and affective interaction. These two types of interactions influence consumers' health behaviors through declarative knowledge (DK), self-efficacy (SE), and outcome expectancy (OE). To validate our proposed research model, we employed the survey method and developed corresponding measurement instruments for constructs in our research model. A total of 352 valid answers were collected, and partial least square was performed to analyze the data. Results: Instrumental doctor-consumer interaction was found to influence consumers' DK (t294=5.763, P<.001), SE (t294=4.891, P<.001), and OE (t294=7.554, P<.001) significantly, whereas affective doctor-consumer interaction also impacted consumers' DK (t294=4.025, P<.001), SE (t294=4.775, P<.001), and OE (t294=4.855, P<.001). Meanwhile, consumers' DK (t294=3.838, P<.001), SE (t294=3.824, P<.001), and OE (t294=2.985, P<.01) all significantly affected consumers' health behaviors. Our mediation analysis showed that consumers' DK, SE, and OE partially mediated the effect of instrumental interaction on health behaviors, whereas the three mediators fully mediated the effect of affective interaction on health behaviors. Conclusions: Compared with many intentional intervention programs, doctor-consumer interaction can be treated as a natural cost-effective intervention to promote consumers' health behaviors. Meanwhile, both instrumental and affective interaction should be highlighted for the best interaction results. DK, SE, and OE are working mechanisms of doctor-consumer interaction. ", doi="10.2196/jmir.9003", url="http://www.jmir.org/2018/2/e73/", url="http://www.ncbi.nlm.nih.gov/pubmed/29490892" } @Article{info:doi/10.2196/jmir.9370, author="Chen, Yen-Yuan and Li, Chia-Ming and Liang, Jyh-Chong and Tsai, Chin-Chung", title="Health Information Obtained From the Internet and Changes in Medical Decision Making: Questionnaire Development and Cross-Sectional Survey", journal="J Med Internet Res", year="2018", month="Feb", day="12", volume="20", number="2", pages="e47", keywords="internet", keywords="help-seeking behavior", keywords="literacy", keywords="decision making", abstract="Background: The increasing utilization of the internet has provided a better opportunity for people to search online for health information, which was not easily available to them in the past. Studies reported that searching on the internet for health information may potentially influence an individual's decision making to change her health-seeking behaviors. Objective: The objectives of this study were to (1) develop and validate 2 questionnaires to estimate the strategies of problem-solving in medicine and utilization of online health information, (2) determine the association between searching online for health information and utilization of online health information, and (3) determine the association between online medical help-seeking and utilization of online health information. Methods: The Problem Solving in Medicine and Online Health Information Utilization questionnaires were developed and implemented in this study. We conducted confirmatory factor analysis to examine the structure of the factor loadings and intercorrelations for all the items and dimensions. We employed Pearson correlation coefficients for examining the correlations between each dimension of the Problem Solving in Medicine questionnaire and each dimension of the Online Health Information Utilization questionnaire. Furthermore, we conducted structure equation modeling for examining the possible linkage between each of the 6 dimensions of the Problem Solving in Medicine questionnaire and each of the 3 dimensions of the Online Health Information Utilization questionnaire. Results: A total of 457 patients participated in this study. Pearson correlation coefficients ranged from .12 to .41, all with statistical significance, implying that each dimension of the Problem Solving in Medicine questionnaire was significantly associated with each dimension of the Online Health Information Utilization questionnaire. Patients with the strategy of online health information search for solving medical problems positively predicted changes in medical decision making (P=.01), consulting with others (P<.001), and promoting self-efficacy on deliberating the online health information (P<.001) based on the online health information they obtained. Conclusions: Present health care professionals have a responsibility to acknowledge that patients' medical decision making may be changed based on additional online health information. Health care professionals should assist patients' medical decision making by initiating as much dialogue with patients as possible, providing credible and convincing health information to patients, and guiding patients where to look for accurate, comprehensive, and understandable online health information. By doing so, patients will avoid becoming overwhelmed with extraneous and often conflicting health information. Educational interventions to promote health information seekers' ability to identify, locate, obtain, read, understand, evaluate, and effectively use online health information are highly encouraged. ", doi="10.2196/jmir.9370", url="http://www.jmir.org/2018/2/e47/", url="http://www.ncbi.nlm.nih.gov/pubmed/29434017" } @Article{info:doi/10.2196/mhealth.9265, author="Quinn, Connolly Charlene and Butler, C. Erin and Swasey, K. Krystal and Shardell, D. Michelle and Terrin, D. Michael and Barr, A. Erik and Gruber-Baldini, L. Ann", title="Mobile Diabetes Intervention Study of Patient Engagement and Impact on Blood Glucose: Mixed Methods Analysis", journal="JMIR Mhealth Uhealth", year="2018", month="Feb", day="02", volume="6", number="2", pages="e31", keywords="mobile health", keywords="diabetes", keywords="engagement", keywords="randomized clinical trial", keywords="qualitative", keywords="digital health", abstract="Background: Successful treatment of diabetes includes patient self-management behaviors to prevent or delay complications and comorbid diseases. On the basis of findings from large clinical trials and professional guidelines, diabetes education programs and health providers prescribe daily regimens of glucose monitoring, healthy eating, stress management, medication adherence, and physical activity. Consistent, long-term commitment to regimens is challenging. Mobile health is increasingly being used to assist patients with lifestyle changes and self-management behaviors between provider visits. The effectiveness of mobile health to improve diabetes outcomes depends on patient engagement with a technology, content, or interactions with providers. Objectives: In the current analysis, we aimed to identify patient engagement themes in diabetes messaging with diabetes providers and determine if differences in engagement in the Mobile Diabetes Intervention Study (MDIS) influenced changes in glycated hemoglobin A1c (HbA1c) over a 1-year treatment period (1.9\% absolute decrease in the parent study). Methods: In the primary MDIS study, 163 patients were enrolled into 1 of 3 mobile intervention groups or a usual care control group based on their physician cluster randomization assignment. The control group received care from their physicians as usual. Participants in each intervention group had access to a patient portal where they could record monitoring values for blood glucose, blood pressure, medication changes, or other self-management information while also assigned to varying levels of physician access to patient data. Intervention participants could choose to send and receive messages to assigned certified diabetes educators with questions or updates through the secure Web portal. For this secondary analysis, patient engagement was measured using qualitative methods to identify self-care themes in 4109 patient messages. Mixed methods were used to determine the impact of patient engagement on change in HbA1c over 1 year. Results: Self-care behavior themes that received the highest engagement for participants were glucose monitoring (75/107, 70.1\%), medication management (71/107, 66.4\%), and reducing risks (71/107, 66.4\%). The average number of messages sent per patient were highest for glucose monitoring (9.2, SD 14.0) and healthy eating (6.9, SD 13.2). Compared to sending no messages, sending any messages about glucose monitoring (P=.03) or medication (P=.01) led to a decrease in HbA1c of 0.62 and 0.72 percentage points, respectively. Sending any messages about healthy eating, glucose monitoring, or medication combined led to a decrease in HbA1c of 0.54 percentage points compared to not sending messages in these themes (P=.045). Conclusions: The findings from this study help validate the efficacy of the mobile diabetes intervention. The next step is to determine differences between patients who engage in mobile interventions and those who do not engage and identify methods to enhance patient engagement. Trial Registration: ClinicalTrials.gov: NCT01107015; https://clinicaltrials.gov/ct2/show/NCT01107015 (Archived by WebCite at http://www.webcitation.org/6wh4ekP4R) ", doi="10.2196/mhealth.9265", url="https://mhealth.jmir.org/2018/2/e31/", url="http://www.ncbi.nlm.nih.gov/pubmed/29396389" } @Article{info:doi/10.2196/mental.9140, author="Petersson, Lena and Erlingsd{\'o}ttir, Gudbj{\"o}rg", title="Open Notes in Swedish Psychiatric Care (Part 1): Survey Among Psychiatric Care Professionals", journal="JMIR Ment Health", year="2018", month="Feb", day="02", volume="5", number="1", pages="e11", keywords="electronic health record", keywords="eHealth", keywords="baseline survey", keywords="mental health", keywords="open notes", keywords="psychiatry", keywords="health professionals", abstract="Background: When the Swedish version of Open Notes, an electronic health record (EHR) service that allows patients online access, was introduced in hospitals, primary care, and specialized care in 2012, psychiatric care was exempt. This was because psychiatric notes were considered too sensitive for patient access. However, as the first region in Sweden, Region Sk{\aa}ne added adult psychiatry to its Open Notes service in 2015. This made it possible to carry out a unique baseline study to investigate how different health care professionals (HCPs) in adult psychiatric care in the region expect Open Notes to impact their patients and their practice. This is the first of two papers about the implementation of Open Notes in adult psychiatric care in Region Sk{\aa}ne. Objective: The objective of this study was to describe, compare, and discuss how different HCPs in adult psychiatric care in Region Sk{\aa}ne expect Open Notes to impact their patients and their own practice. Methods: A full population Web-based questionnaire was distributed to psychiatric care professionals in Region Sk{\aa}ne in late 2015. The response rate was 28.86\% (871/3017). Analyses show that the respondents were representative of the staff as a whole. A statistical analysis examined the relationships between different professionals and attitudes to the Open Notes service. Results: The results show that the psychiatric HCPs are generally of the opinion that the service would affect their own practice and their patients negatively. The most striking result was that more than 60\% of both doctors (80/132, 60.6\%) and psychologists (55/90, 61\%) were concerned that they would be less candid in their documentation in the future. Conclusions: Open Notes can increase the transparency between patients and psychiatric HCPs because patients are able to access their EHRs online without delay and thus, can read notes that have not yet been approved by the responsible HCP. This may be one explanation as to why HCPs are concerned that the service will affect both their own work and their patients. ", doi="10.2196/mental.9140", url="http://mental.jmir.org/2018/1/e11/", url="http://www.ncbi.nlm.nih.gov/pubmed/29396386" } @Article{info:doi/10.2196/jopm.8957, author="Prior, Jane Sarah and Campbell, Steven", title="Patient and Family Involvement: A Discussion of Co-Led Redesign of Healthcare Services", journal="J Participat Med", year="2018", month="Feb", day="01", volume="10", number="1", pages="e5", keywords="co-led redesign", keywords="health care", keywords="patient and family engagement", keywords="patient involvement", keywords="rural health", doi="10.2196/jopm.8957", url="http://jopm.jmir.org/2018/1/e5/" } @Article{info:doi/10.2196/jmir.8983, author="Macdonald, G. Graham and Townsend, F. Anne and Adam, Paul and Li, C. Linda and Kerr, Sheila and McDonald, Michael and Backman, L. Catherine", title="eHealth Technologies, Multimorbidity, and the Office Visit: Qualitative Interview Study on the Perspectives of Physicians and Nurses", journal="J Med Internet Res", year="2018", month="Jan", day="26", volume="20", number="1", pages="e31", keywords="eHealth", keywords="patient-physician relationship", keywords="relational ethics", keywords="multimorbidity", keywords="online information seeking", keywords="email", keywords="office visit", keywords="health professional perspective", abstract="Background: eHealth is a broad term referring to the application of information and communication technologies in the health sector, ranging from health records to telemedicine and multiple forms of health education and digital tools. By providing increased and anytime access to information, opportunities to exchange experiences with others, and self-management support, eHealth has been heralded as transformational. It has created a group of informed, engaged, and empowered patients as partners, equipped to take part in shared decision making and effectively self-manage chronic illness. Less attention has been given to health care professionals' (HCPs) experiences of the role of eHealth in patient encounters. Objective: The objective of this study was to examine HCPs' perspectives on how eHealth affects their relationships with patients living with multiple chronic conditions, as well as its ethical and practical ramifications. Methods: We interviewed HCPs about their experiences with eHealth and its impact on the office visit. Eligible participants needed to report a caseload of ?25\% of patients with multimorbidity to address issues of managing complex chronic conditions and coordination of care. We used a semistructured discussion guide for in-depth interviews, and follow-up interviews served to clarify and expand upon initial discussions. Constant comparisons and a narrative approach guided the analyses, and a relational ethics conceptual lens was applied to the data to identify emergent themes. Results: A total of 12 physicians and nurses (6 male, 6 female; median years of practice=13) participated. eHealth tools most frequently described were Web-based educational resources for patients and Web-based resources for HCPs such as curated scientific summaries on diagnostic criteria, clinical therapies, and dosage calculators. Analysis centered on a grand theme of the two-way conversation between HCPs and patients, which addresses a general recentering of the ethical relationship between HCPs and patients around engagement. Subthemes explain the evolution of the two-way conversation, and having, using, and supporting the two-way conversation with patients, primarily as this relates to achieving adherence and health outcomes. Conclusions: Emerging ethical concerns were related to the ambiguity of the ideal of empowered patients and the ways in which health professionals described enacting those ideals in practice, showing how the cultural shift toward truly mutually respectful and collaborative practice is in transition. HCPs aim to act in the best interests of their patients; the challenge is to benefit from emergent technologies that may enhance patient-HCP interactions and effective care, while abiding by regulations, dealing with the strictures of the technology itself, and managing changing demands on their time. ", doi="10.2196/jmir.8983", url="http://www.jmir.org/2018/1/e31/", url="http://www.ncbi.nlm.nih.gov/pubmed/29374004" } @Article{info:doi/10.2196/jmir.8669, author="Chen, Jinying and Druhl, Emily and Polepalli Ramesh, Balaji and Houston, K. Thomas and Brandt, A. Cynthia and Zulman, M. Donna and Vimalananda, G. Varsha and Malkani, Samir and Yu, Hong", title="A Natural Language Processing System That Links Medical Terms in Electronic Health Record Notes to Lay Definitions: System Development Using Physician Reviews", journal="J Med Internet Res", year="2018", month="Jan", day="22", volume="20", number="1", pages="e26", keywords="electronic health records", keywords="natural language processing", keywords="consumer health informatics", keywords="usability testing", keywords="computer software", abstract="Background: Many health care systems now allow patients to access their electronic health record (EHR) notes online through patient portals. Medical jargon in EHR notes can confuse patients, which may interfere with potential benefits of patient access to EHR notes. Objective: The aim of this study was to develop and evaluate the usability and content quality of NoteAid, a Web-based natural language processing system that links medical terms in EHR notes to lay definitions, that is, definitions easily understood by lay people. Methods: NoteAid incorporates two core components: CoDeMed, a lexical resource of lay definitions for medical terms, and MedLink, a computational unit that links medical terms to lay definitions. We developed innovative computational methods, including an adapted distant supervision algorithm to prioritize medical terms important for EHR comprehension to facilitate the effort of building CoDeMed. Ten physician domain experts evaluated the user interface and content quality of NoteAid. The evaluation protocol included a cognitive walkthrough session and a postsession questionnaire. Physician feedback sessions were audio-recorded. We used standard content analysis methods to analyze qualitative data from these sessions. Results: Physician feedback was mixed. Positive feedback on NoteAid included (1) Easy to use, (2) Good visual display, (3) Satisfactory system speed, and (4) Adequate lay definitions. Opportunities for improvement arising from evaluation sessions and feedback included (1) improving the display of definitions for partially matched terms, (2) including more medical terms in CoDeMed, (3) improving the handling of terms whose definitions vary depending on different contexts, and (4) standardizing the scope of definitions for medicines. On the basis of these results, we have improved NoteAid's user interface and a number of definitions, and added 4502 more definitions in CoDeMed. Conclusions: Physician evaluation yielded useful feedback for content validation and refinement of this innovative tool that has the potential to improve patient EHR comprehension and experience using patient portals. Future ongoing work will develop algorithms to handle ambiguous medical terms and test and evaluate NoteAid with patients. ", doi="10.2196/jmir.8669", url="http://www.jmir.org/2018/1/e26/", url="http://www.ncbi.nlm.nih.gov/pubmed/29358159" } @Article{info:doi/10.2196/jmir.8444, author="Gr{\"u}nloh, Christiane and Myreteg, Gunilla and Cajander, {\AA}sa and Rexhepi, Hanife", title="``Why Do They Need to Check Me?'' Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study", journal="J Med Internet Res", year="2018", month="Jan", day="15", volume="20", number="1", pages="e11", keywords="patient accessible electronic health records", keywords="medical records", keywords="personal health records", keywords="eHealth services for patients", keywords="patient portal", keywords="physicians", keywords="patient empowerment", keywords="patient participation", keywords="doctor-patient relationship", abstract="Background: Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients. Objective: This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians' constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement. Methods: A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed. Results: Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient's role, lack of skills (technical or regarding medical jargon), motives to read, and patients' characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care. Conclusions: Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of ``power'' in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of ``monitoring the doctor'' but to make sense of the situation. ", doi="10.2196/jmir.8444", url="http://www.jmir.org/2018/1/e11/", url="http://www.ncbi.nlm.nih.gov/pubmed/29335237" } @Article{info:doi/10.2196/jmir.8040, author="Gabriels, Katleen and Moerenhout, Tania", title="Exploring Entertainment Medicine and Professionalization of Self-Care: Interview Study Among Doctors on the Potential Effects of Digital Self-Tracking", journal="J Med Internet Res", year="2018", month="Jan", day="12", volume="20", number="1", pages="e10", keywords="mobile applications", keywords="wearable electronic devices", keywords="self-recorded health data", keywords="self care", keywords="quantified self", keywords="qualitative research", abstract="Background: Nowadays, digital self-tracking devices offer a plethora of possibilities to both healthy and chronically ill users who want to closely examine their body. This study suggests that self-tracking in a private setting will lead to shifting understandings in professional care. To provide more insight into these shifts, this paper seeks to lay bare the promises and challenges of self-tracking while staying close to the everyday professional experience of the physician. Objective: The aim of this study was to (1) offer an analysis of how medical doctors evaluate self-tracking methods in their practice and (2) explore the anticipated shifts that digital self-care will bring about in relation to our findings and those of other studies. Methods: A total of 12 in-depth semistructured interviews with general practitioners (GPs) and cardiologists were conducted in Flanders, Belgium, from November 2015 to November 2016. Thematic analysis was applied to examine the transcripts in an iterative process. Results: Four major themes arose in our body of data: (1) the patient as health manager, (2) health obsession and medicalization, (3) information management, and (4) shifting roles of the doctors and impact on the health care organization. Our research findings show a nuanced understanding of the potentials and pitfalls of different forms of self-tracking. The necessity of contextualization of self-tracking data and a professionalization of self-care through digital devices come to the fore as important overarching concepts. Conclusions: This interview study with Belgian doctors examines the potentials and challenges of self-monitoring while focusing on the everyday professional experience of the physician. The dialogue between our dataset and the existing literature affords a fine-grained image of digital self-care and its current meaning in a medical-professional landscape. ", doi="10.2196/jmir.8040", url="http://www.jmir.org/2018/1/e10/", url="http://www.ncbi.nlm.nih.gov/pubmed/29330140" } @Article{info:doi/10.2196/humanfactors.7882, author="Kurahashi, M. Allison and Stinson, N. Jennifer and van Wyk, Margaret and Luca, Stephanie and Jamieson, Trevor and Weinstein, Peter and Cafazzo, A. Joseph and Lokuge, Bhadra and Cohen, Eyal and Rapoport, Adam and Husain, Amna", title="The Perceived Ease of Use and Usefulness of Loop: Evaluation and Content Analysis of a Web-Based Clinical Collaboration System", journal="JMIR Hum Factors", year="2018", month="Jan", day="09", volume="5", number="1", pages="e2", keywords="patient-centered care", keywords="patient participation", keywords="chronic disease", keywords="communication", keywords="internet communication tools", keywords="usability testing", keywords="interdisciplinary communication", keywords="health communication", keywords="continuity of patient care", keywords="patient care team", keywords="inventions", abstract="Background: Patients with complex health care needs require the expertise of many health care providers. Communication, collaboration, and patient-centered care positively impact care quality and patient outcomes. Few technologies exist that facilitate collaboration between providers across settings of care and also engage the patient. We developed a Web-based clinical collaboration system, Loop, to address this gap. The likelihood of a technological system's uptake is associated with its perceived ease of use and perceived usefulness. We engaged stakeholders in the conceptualization and development of Loop in an effort to maximize its intuitiveness and utility. Objective: This study aimed to report end users' perceptions about the ease of use and usefulness of Loop captured during usability tests of Loop. Methods: Participants represented three user types (patients, caregivers, and health care providers) recruited from three populations (adults with cancer, adolescents and young adults with cancer, and children with medical complexity). We conducted usability testing over three iterative cycles of testing and development in both laboratory-based and off-site environments. We performed a content analysis of usability testing transcripts to summarize and describe participant perceptions about the ease of use and usefulness of Loop. Results: Participants enjoyed testing Loop and were able to use the core functions---composing, posting, and reading messages---with little difficulty. They had difficulty interpreting certain visual cues and design elements or the purpose of some features. This difficulty negatively impacted perceived ease of use but was primarily limited to auxiliary features. Participants predicted that Loop could improve the efficiency and effectiveness of communication between care team members; however, this perceived usefulness could be compromised by disruptions to personal workflow such as additional time or task requirements. Conclusions: Loop was perceived to have value as a collaboration system; however, usability testing findings indicate that some design and functional elements need to be addressed to improve ease of use. Additionally, participant concerns highlight the need to consider how a system can be implemented so as to minimize impact on workflow and optimize usefulness. ", doi="10.2196/humanfactors.7882", url="http://humanfactors.jmir.org/2018/1/e2/", url="http://www.ncbi.nlm.nih.gov/pubmed/29317386" } @Article{info:doi/10.2196/jmir.7412, author="Berrouiguet, Sofian and Perez-Rodriguez, M. Mercedes and Larsen, Mark and Baca-Garc{\'i}a, Enrique and Courtet, Philippe and Oquendo, Maria", title="From eHealth to iHealth: Transition to Participatory and Personalized Medicine in Mental Health", journal="J Med Internet Res", year="2018", month="Jan", day="03", volume="20", number="1", pages="e2", keywords="data mining", keywords="decision making", keywords="mobile phone", keywords="Web app", keywords="mental health", doi="10.2196/jmir.7412", url="http://www.jmir.org/2018/1/e2/", url="http://www.ncbi.nlm.nih.gov/pubmed/29298748" } @Article{info:doi/10.2196/jmir.8877, author="Reid, Kathy and Hartling, Lisa and Ali, Samina and Le, Anne and Norris, Allison and Scott, D. Shannon", title="Development and Usability Evaluation of an Art and Narrative-Based Knowledge Translation Tool for Parents With a Child With Pediatric Chronic Pain: Multi-Method Study", journal="J Med Internet Res", year="2017", month="Dec", day="14", volume="19", number="12", pages="e412", keywords="pain", keywords="child health", keywords="parents", keywords="art", abstract="Background: Chronic pain in childhood is increasingly being recognized as a significant clinical problem for children and their families. Previous research has identified that families want information about the causes of their child's chronic pain, treatment options, and effective strategies to help their child cope with the pain. Unfortunately, parents have reported that finding this information can be challenging. Objective: The aim of this study was to actively work together with children attending a pediatric chronic pain clinic and their parents to develop, refine, and evaluate the usability of an art and narrative-based electronic book (e-book) for pediatric chronic pain. Methods: A multiphase, multi-method research design employing patient engagement techniques was used to develop, refine, and evaluate the usability of an art and narrative based e-book for pediatric chronic pain management to facilitate knowledge translation for parents with a child with chronic pain. The multiple phases included the following: (1) qualitative interviews to compile parents' narratives using qualitative interviews; (2) qualitative data analysis; (3) development of an e-book prototype; (4) expert clinician feedback; (5) parent usability evaluation, knowledge change, and confidence in knowledge responses using an electronic survey; (6) e-book refinement; and (7) dissemination of the e-book. Results: A 48-page e-book was developed to characterize the experiences of a family living with a child with chronic pain. The e-book was a composite narrative of the parent interviews and encompassed descriptions of the effects the condition has on each member of the family. This was merged with the best available research evidence on the day-to-day management of pediatric chronic pain. The e-book was vetted for clinical accuracy by expert pediatric pain clinicians. All parents that participated in the usability evaluation (N=14) agreed or strongly agreed the content of the e-book was easy to understand and stated that they would recommend the e-book to other families who have children with chronic pain. Our research identified up to a 21.4\% increase in knowledge after using the e-book, and paired t tests demonstrated a statistically significant difference in confidence in answering two of the five knowledge questions (chronic pain is a disease involving changes in the nervous system; the use of ibuprofen is usually effective at controlling chronic pain); t13=0.165, P=.001 and t13=0.336, P=.002, respectively, after being exposed to the e-book. Conclusions: Our results demonstrate that parents positively rated an e-book developed for parents with a child with chronic pain. Our results also identify that overall, parents' knowledge increased after using the e-book, and confidence in their knowledge about chronic pain and its management increased in two aspects after e-book exposure. These results suggest that art and narrative-based knowledge translation interventions may be useful in transferring complex health information to parents. ", doi="10.2196/jmir.8877", url="http://www.jmir.org/2017/12/e412/", url="http://www.ncbi.nlm.nih.gov/pubmed/29242180" } @Article{info:doi/10.2196/jmir.8867, author="Ryu, Borim and Kim, Nari and Heo, Eunyoung and Yoo, Sooyoung and Lee, Keehyuck and Hwang, Hee and Kim, Jeong-Whun and Kim, Yoojung and Lee, Joongseek and Jung, Young Se", title="Impact of an Electronic Health Record-Integrated Personal Health Record on Patient Participation in Health Care: Development and Randomized Controlled Trial of MyHealthKeeper", journal="J Med Internet Res", year="2017", month="Dec", day="07", volume="19", number="12", pages="e401", keywords="health records, personal", keywords="lifelog data", keywords="lifestyle management", keywords="clinical intervention", keywords="health care service", keywords="electronic health records", keywords="mobile health", keywords="telemedicine", keywords="clinical trial", abstract="Background: Personal health record (PHR)--based health care management systems can improve patient engagement and data-driven medical diagnosis in a clinical setting. Objective: The purpose of this study was (1) to demonstrate the development of an electronic health record (EHR)--tethered PHR app named MyHealthKeeper, which can retrieve data from a wearable device and deliver these data to a hospital EHR system, and (2) to study the effectiveness of a PHR data-driven clinical intervention with clinical trial results. Methods: To improve the conventional EHR-tethered PHR, we ascertained clinicians' unmet needs regarding PHR functionality and the data frequently used in the field through a cocreation workshop. We incorporated the requirements into the system design and architecture of the MyHealthKeeper PHR module. We constructed the app and validated the effectiveness of the PHR module by conducting a 4-week clinical trial. We used a commercially available activity tracker (Misfit) to collect individual physical activity data, and developed the MyHealthKeeper mobile phone app to record participants' patterns of daily food intake and activity logs. We randomly assigned 80 participants to either the PHR-based intervention group (n=51) or the control group (n=29). All of the study participants completed a paper-based survey, a laboratory test, a physical examination, and an opinion interview. During the 4-week study period, we collected health-related mobile data, and study participants visited the outpatient clinic twice and received PHR-based clinical diagnosis and recommendations. Results: A total of 68 participants (44 in the intervention group and 24 in the control group) completed the study. The PHR intervention group showed significantly higher weight loss than the control group (mean 1.4 kg, 95\% CI 0.9-1.9; P<.001) at the final week (week 4). In addition, triglyceride levels were significantly lower by the end of the study period (mean 2.59 mmol/L, 95\% CI 17.6-75.8; P=.002). Conclusions: We developed an innovative EHR-tethered PHR system that allowed clinicians and patients to share lifelog data. This study shows the effectiveness of a patient-managed and clinician-guided health tracker system and its potential to improve patient clinical profiles. Trial Registration: ClinicalTrials.gov NCT03200119; https://clinicaltrials.gov/ct2/show/NCT03200119 (Archived by WebCite at http://www.webcitation.org/6v01HaCdd) ", doi="10.2196/jmir.8867", url="http://www.jmir.org/2017/12/e401/", url="http://www.ncbi.nlm.nih.gov/pubmed/29217503" } @Article{info:doi/10.2196/jmir.8073, author="Bouayad, Lina and Ialynytchev, Anna and Padmanabhan, Balaji", title="Patient Health Record Systems Scope and Functionalities: Literature Review and Future Directions", journal="J Med Internet Res", year="2017", month="Nov", day="15", volume="19", number="11", pages="e388", keywords="personal health record systems", keywords="health records, personal", keywords="electronic health records", keywords="data analytics", keywords="medical informatics", keywords="patient-centered care", keywords="review", keywords="health platforms", keywords="multiorganizational systems", keywords="ultralarge systems", abstract="Background: A new generation of user-centric information systems is emerging in health care as patient health record (PHR) systems. These systems create a platform supporting the new vision of health services that empowers patients and enables patient-provider communication, with the goal of improving health outcomes and reducing costs. This evolution has generated new sets of data and capabilities, providing opportunities and challenges at the user, system, and industry levels. Objective: The objective of our study was to assess PHR data types and functionalities through a review of the literature to inform the health care informatics community, and to provide recommendations for PHR design, research, and practice. Methods: We conducted a review of the literature to assess PHR data types and functionalities. We searched PubMed, Embase, and MEDLINE databases from 1966 to 2015 for studies of PHRs, resulting in 1822 articles, from which we selected a total of 106 articles for a detailed review of PHR data content. Results: We present several key findings related to the scope and functionalities in PHR systems. We also present a functional taxonomy and chronological analysis of PHR data types and functionalities, to improve understanding and provide insights for future directions. Functional taxonomy analysis of the extracted data revealed the presence of new PHR data sources such as tracking devices and data types such as time-series data. Chronological data analysis showed an evolution of PHR system functionalities over time, from simple data access to data modification and, more recently, automated assessment, prediction, and recommendation. Conclusions: Efforts are needed to improve (1) PHR data quality through patient-centered user interface design and standardized patient-generated data guidelines, (2) data integrity through consolidation of various types and sources, (3) PHR functionality through application of new data analytics methods, and (4) metrics to evaluate clinical outcomes associated with automated PHR system use, and costs associated with PHR data storage and analytics. ", doi="10.2196/jmir.8073", url="http://www.jmir.org/2017/11/e388/", url="http://www.ncbi.nlm.nih.gov/pubmed/29141839" } @Article{info:doi/10.2196/ijmr.7107, author="Miron-Shatz, Talya and Becker, Stefan and Zaromb, Franklin and Mertens, Alexander and Tsafrir, Avi", title="``A Phenomenal Person and Doctor'': Thank You Letters to Medical Care Providers", journal="Interact J Med Res", year="2017", month="Nov", day="02", volume="6", number="2", pages="e22", keywords="quality of health care", keywords="doctor-patient relationship", keywords="content analysis", keywords="decision making", keywords="doctor-patient communication", keywords="clinical encounter", keywords="patient satisfaction", keywords="online reviews", keywords="patient-centered care", abstract="Background: Thank you letters to physicians and medical facilities are an untapped resource, providing an invaluable glimpse into what patients notice and appreciate in their care. Objective: The aim of this study was to analyze such thank you letters as posted on the Web by medical institutions to find what patients and families consider to be good care. In an age of patient-centered care, it is pivotal to see what metrics patients and families apply when assessing their care and whether they grasp specific versus general qualities in their care. Methods: Our exploratory inquiry covered 100 thank you letters posted on the Web by 26 medical facilities in the United States and the United Kingdom. We systematically coded and descriptively presented the aspects of care that patients and their families thanked doctors and medical facilities for. We relied on previous work outlining patient priorities and satisfaction (Anderson et al, 2007), to which we added a distinction between global and specific evaluations for each of the already existing categories with two additional categories: general praise and other, and several subcategories, such as treatment outcome, to the category of medical care. Results: In 73\% of the letters (73/100), physicians were primarily thanked for their medical treatment. In 71\% (71/100) of the letters, they were thanked for their personality and demeanor. In 52\% cases (52/100), these two aspects were mentioned together, suggesting that from the perspective of patient as well as the family member, both are deemed necessary in positive evaluation of medical care. Only 8\% (8/100) of the letters lacked reference to medical care, personality or demeanor, or communication. No statistically significant differences were observed in the number of letters that expressed gratitude for the personality or demeanor of medical care providers versus the quality of medical care ($\chi$21, N=200=0.1, not statistically significant). Letters tended to express more specific praise for personality or demeanor, such as being supportive, understanding, humane and caring (48/71, 68\%) but more general praise for medical care ($\chi$21, N=424=63.9, P<.01). The most often mentioned specific quality of medical care were treatment outcomes (30/73, 41\%), followed by technical competence (15/73, 21\%) and treatment approach (14/73, 19\%). A limitation of this inquiry is that we analyzed the letters that medical centers chose to post on the Web. These are not necessarily a representative sample of all thank you letters as are sent to health care institutions but are still indicative of what centers choose to showcase on the Web. Conclusions: Physician demeanor and quality of interaction with patients are pivotal in how laymen perceive good care, no less so than medical care per se. This inquiry can inform care providers and medical curricula, leading to an improvement in the perceived quality of care. ", doi="10.2196/ijmr.7107", url="http://www.i-jmr.org/2017/2/e22/", url="http://www.ncbi.nlm.nih.gov/pubmed/29097353" } @Article{info:doi/10.2196/publichealth.7344, author="Brownstein, S. John and Chu, Shuyu and Marathe, Achla and Marathe, V. Madhav and Nguyen, T. Andre and Paolotti, Daniela and Perra, Nicola and Perrotta, Daniela and Santillana, Mauricio and Swarup, Samarth and Tizzoni, Michele and Vespignani, Alessandro and Vullikanti, S. Anil Kumar and Wilson, L. Mandy and Zhang, Qian", title="Combining Participatory Influenza Surveillance with Modeling and Forecasting: Three Alternative Approaches", journal="JMIR Public Health Surveill", year="2017", month="Nov", day="01", volume="3", number="4", pages="e83", keywords="forecasting", keywords="disease surveillance", keywords="crowdsourcing", keywords="nonresponse bias", abstract="Background: Influenza outbreaks affect millions of people every year and its surveillance is usually carried out in developed countries through a network of sentinel doctors who report the weekly number of Influenza-like Illness cases observed among the visited patients. Monitoring and forecasting the evolution of these outbreaks supports decision makers in designing effective interventions and allocating resources to mitigate their impact. Objective: Describe the existing participatory surveillance approaches that have been used for modeling and forecasting of the seasonal influenza epidemic, and how they can help strengthen real-time epidemic science and provide a more rigorous understanding of epidemic conditions. Methods: We describe three different participatory surveillance systems, WISDM (Widely Internet Sourced Distributed Monitoring), Influenzanet and Flu Near You (FNY), and show how modeling and simulation can be or has been combined with participatory disease surveillance to: i) measure the non-response bias in a participatory surveillance sample using WISDM; and ii) nowcast and forecast influenza activity in different parts of the world (using Influenzanet and Flu Near You). Results: WISDM-based results measure the participatory and sample bias for three epidemic metrics i.e. attack rate, peak infection rate, and time-to-peak, and find the participatory bias to be the largest component of the total bias. The Influenzanet platform shows that digital participatory surveillance data combined with a realistic data-driven epidemiological model can provide both short-term and long-term forecasts of epidemic intensities, and the ground truth data lie within the 95 percent confidence intervals for most weeks. The statistical accuracy of the ensemble forecasts increase as the season progresses. The Flu Near You platform shows that participatory surveillance data provide accurate short-term flu activity forecasts and influenza activity predictions. The correlation of the HealthMap Flu Trends estimates with the observed CDC ILI rates is 0.99 for 2013-2015. Additional data sources lead to an error reduction of about 40\% when compared to the estimates of the model that only incorporates CDC historical information. Conclusions: While the advantages of participatory surveillance, compared to traditional surveillance, include its timeliness, lower costs, and broader reach, it is limited by a lack of control over the characteristics of the population sample. Modeling and simulation can help overcome this limitation as well as provide real-time and long-term forecasting of influenza activity in data-poor parts of the world. ", doi="10.2196/publichealth.7344", url="http://publichealth.jmir.org/2017/4/e83/", url="http://www.ncbi.nlm.nih.gov/pubmed/29092812" } @Article{info:doi/10.2196/jmir.7639, author="Giesler, M. J{\"u}rgen and Keller, Bettina and Repke, Tim and Leonhart, Rainer and Weis, Joachim and Muckelbauer, Rebecca and Rieckmann, Nina and M{\"u}ller-Nordhorn, Jacqueline and Lucius-Hoene, Gabriele and Holmberg, Christine", title="Effect of a Website That Presents Patients' Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial", journal="J Med Internet Res", year="2017", month="Oct", day="13", volume="19", number="10", pages="e334", keywords="self-efficacy", keywords="colorectal cancer", keywords="patient competence", keywords="narrative information", keywords="Web-based experiential information", abstract="Background: Patients often seek other patients' experiences with the disease. The Internet provides a wide range of opportunities to share and learn about other people's health and illness experiences via blogs or patient-initiated online discussion groups. There also exists a range of medical information devices that include experiential patient information. However, there are serious concerns about the use of such experiential information because narratives of others may be powerful and pervasive tools that may hinder informed decision making. The international research network DIPEx (Database of Individual Patients' Experiences) aims to provide scientifically based online information on people's experiences with health and illness to fulfill patients' needs for experiential information, while ensuring that the presented information includes a wide variety of possible experiences. Objective: The aim is to evaluate the colorectal cancer module of the German DIPEx website krankheitserfahrungen.de with regard to self-efficacy for coping with cancer and patient competence. Methods: In 2015, a Web-based randomized controlled trial was conducted using a two-group between-subjects design and repeated measures. The study sample consisted of individuals who had been diagnosed with colorectal cancer within the past 3 years or who had metastasis or recurrent disease. Outcome measures included self-efficacy for coping with cancer and patient competence. Participants were randomly assigned to either an intervention group that had immediate access to the colorectal cancer module for 2 weeks or to a waiting list control group. Outcome criteria were measured at baseline before randomization and at 2 weeks and 6 weeks Results: The study randomized 212 persons. On average, participants were 54 (SD 11.1) years old, 58.8\% (124/211) were female, and 73.6\% (156/212) had read or heard stories of other patients online before entering the study, thus excluding any influence of the colorectal cancer module on krankheitserfahrungen.de. No intervention effects were found at 2 and 6 weeks after baseline. Conclusions: The results of this study do not support the hypothesis that the website studied may increase self-efficacy for coping with cancer or patient competencies such as self-regulation or managing emotional distress. Possible explanations may involve characteristics of the website itself, its use by participants, or methodological reasons. Future studies aimed at evaluating potential effects of websites providing patient experiences on the basis of methodological principles such as those of DIPEx might profit from extending the range of outcome measures, from including additional measures of website usage behavior and users' motivation, and from expanding concepts, such as patient competency to include items that more directly reflect patients' perceived effects of using such a website. Trial Registration: Clinicaltrials.gov NCT02157454; https://clinicaltrials.gov/ct2/show/NCT02157454 (Archived by WebCite at http://www.webcitation.org/6syrvwXxi) ", doi="10.2196/jmir.7639", url="http://www.jmir.org/2017/10/e334/", url="http://www.ncbi.nlm.nih.gov/pubmed/29030329" } @Article{info:doi/10.2196/jmir.7406, author="Amann, Julia and Rubinelli, Sara", title="Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study", journal="J Med Internet Res", year="2017", month="Oct", day="10", volume="19", number="10", pages="e320", keywords="community networks", keywords="internet", keywords="patient-centered care", keywords="telemedicine", keywords="community participation", keywords="co-creation", abstract="Background: The use of online communities to promote end user involvement and co-creation in the product and service innovation process is well documented in the marketing and management literature. Whereas online communities are widely used for health care service provision and peer-to-peer support, only little is known about how they could be integrated into the health care innovation process. Objective: The overall objective of this qualitative study was to explore community managers' views on and experiences with knowledge co-creation in online communities for people with disabilities. Methods: A descriptive qualitative research design was used. Data were collected through semi-structured interviews with nine community managers. To complement the interview data, additional information was retrieved from the communities in the form of structural information (number of registered users, number and names of topic areas covered by the forum) and administrative information (terms and conditions and privacy statements, forum rules). Data were analyzed using thematic analysis. Results: Our results highlight two main aspects: peer-to-peer knowledge co-creation and types of collaboration with external actors. Although community managers strongly encouraged peer-to-peer knowledge co-creation, our findings indicated that these activities were not common practice in the communities under investigation. In fact, much of what related to co-creation, prototyping, and product development was still perceived to be directed by professionals and experts. Community managers described the role of their respective communities as informing this process rather than a driving force. The role of community members as advisors to researchers, health care professionals, and businesses was discussed in the context of types of collaboration with external actors. According to the community managers, most of the external inquiries related to research projects of students or health care professionals in training, who often joined a community for the sole purpose of recruiting participants for their research. Despite this unilateral form of knowledge co-creation, community managers acknowledged the mere interest of these user groups as beneficial, as long as their interest was not purely financially motivated. Being able to contribute to advancing research, improving products, and informing the planning and design of health care services were described as some of the key motivations to engage with external stakeholders. Conclusions: This paper draws attention to the currently under-investigated role of online communities as platforms for collaboration and co-creation between patients, health care professionals, researchers, and businesses. It describes community managers' views on and experiences with knowledge co-creation and provides recommendations on how these activities can be leveraged to foster knowledge co-creation in health care. Engaging in knowledge co-creation with online health communities may ultimately help to inform the planning and design of products, services, and research activities that better meet the actual needs of those living with a disability. ", doi="10.2196/jmir.7406", url="https://www.jmir.org/2017/10/e320/", url="http://www.ncbi.nlm.nih.gov/pubmed/29017993" } @Article{info:doi/10.2196/jmir.7809, author="Risling, Tracie and Martinez, Juan and Young, Jeremy and Thorp-Froslie, Nancy", title="Evaluating Patient Empowerment in Association With eHealth Technology: Scoping Review", journal="J Med Internet Res", year="2017", month="Sep", day="29", volume="19", number="9", pages="e329", keywords="review", keywords="eHealth", keywords="patient engagement", keywords="patient empowerment", keywords="patient activation", keywords="measure", abstract="Background: The prioritization of sustainable patient-centered care in contemporary health care has resulted in an increased focus on patient empowerment, which in turn is considered to facilitate patient independence, self-management, and self-efficacy. However, a definitional consensus of empowerment remains elusive, impeding efforts to translate the conceptual ideals of empowerment into a measurable entity associated with changes in health care behavior or outcomes. The rapid integration of technology in health care serves to add another layer of complexity in the measurability and operationalization of empowerment and helps to create a specific context in which this conceptual entity should be further examined. Objective: The primary objective of this scoping review was to explore the concept of patient empowerment within the electronic health (eHealth) context. A further focus on the association or measurement of this concept in conjunction with tethered patient portal use was also employed. Methods: In this scoping review, a six-step framework was used to guide the search and paper selection process. The review was initiated with two broad research questions, which are as follows: (1) What is the relationship between empowerment and the use of eHealth technologies from a patient perspective? (2) How is patient empowerment (and/or engagement or activation) influenced by accessing personal health information through a tethered patient portal? Multiple databases were employed in a comprehensive search strategy, and papers were primarily evaluated and selected for inclusion by 2 review authors, and a third author was consulted to resolve any issues in reaching consensus. Results: From an initial count of 1387 publications, this review returned nine systematic or literature review papers and 19 empirical studies that pertained to patient empowerment (and/or engagement and activation) in relation to the use of tethered patient portals providing access to electronic health records (EHRs). Of the 19 empirical publications, only four were found to have used specific patient empowerment measures with significant variety in their identified conceptual elements. Conclusions: There is a persistent lack of conceptual clarity in patient empowerment research, and this has extended to study within the eHealth context. The interchangeable use or conflation of terms such as patient empowerment, engagement, and activation, has further complicated the advancement of distinct conceptual measures. To more strongly align changes in patient empowerment with supportive eHealth solutions, the challenges of achieving a consensus on how best to operationalize and measure patient empowerment must be met. ", doi="10.2196/jmir.7809", url="http://www.jmir.org/2017/9/e329/", url="http://www.ncbi.nlm.nih.gov/pubmed/28963090" } @Article{info:doi/10.2196/medinform.7707, author="Hefner, L. Jennifer and Sieck, J. Cynthia and Walker, M. Daniel and Huerta, R. Timothy and McAlearney, Scheck Ann", title="System-Wide Inpatient Portal? Implementation: Survey of Health Care Team Perceptions", journal="JMIR Med Inform", year="2017", month="Sep", day="14", volume="5", number="3", pages="e31", keywords="patient portals", keywords="hospitalization", keywords="medical informatics", keywords="patient participation", abstract="Background: Inpatient portals, a new type of patient portal tailored specifically to the hospital setting, can allow patients to access up-to-date health information and exchange secure communications with their care team. As such, inpatient portals present an opportunity for patients to increase engagement in their care during a time of acute crisis that emphasizes focus on a patient's health. While there is a large body of research on patient portals in the outpatient setting, questions are being raised specifically about inpatient portals, such as how they will be incorporated into the flow of patient care in hectic, stressed, team-based hospital settings. Objective: Our aim is to improve understanding about hospital care team members' perceptions of the value of an interactive patient portal for admitted patients, as well as to ascertain staff orientation toward this new technology. Methods: Throughout the course of 2016, an inpatient portal, MyChart Bedside (MCB) was implemented across a five-hospital health system. The portal is a tablet-based app that includes a daily schedule, lab/test results, secure messaging with the care team, a place to take notes, and access to educational materials. Within a month of initial rollout, hospital care team members completed a 5-minute, anonymous online survey to assess attitudes and perceptions about MCB use and staff training for the new technology. Results: Throughout the health system, 686 staff members completed the survey: 193 physicians (23.6\%), 439 nurses (53.7\%), and 186 support staff (22.7\%). Questions about the importance of MCB, self-efficacy in using MCB with patients, and feelings about sufficient training and resources showed that an average of 40-60\% of respondents in each group reported a positive orientation toward the MCB technology and training received. This positive orientation was highest among support staff, lower among nurses, and lowest for physicians (all differences by staff role were statistically significant at P<.001). Additionally, 62.0\% of respondents reported ``not enough'' training. Conclusions: Despite the robust training effort, similar to that used in previous health information technology implementations at this health system, hospital care team members reported only a moderately positive orientation toward MCB and its potential, and the majority wanted more training. We propose that due to the unique elements of the inpatient portal---interactive features used by patients and providers requiring explanation and collaboration---traditional training approaches may be insufficient. Introduction of the inpatient portal as a new collaborative tool may thus require new methods of training to support enhanced engagement between patients and their care team. ", doi="10.2196/medinform.7707", url="http://medinform.jmir.org/2017/3/e31/", url="http://www.ncbi.nlm.nih.gov/pubmed/28912115" } @Article{info:doi/10.2196/jmir.7673, author="Chen, T. Annie and Carriere, M. Rachel and Kaplan, Jan Samantha", title="The User Knows What to Call It: Incorporating Patient Voice Through User-Contributed Tags on a Participatory Platform About Health Management", journal="J Med Internet Res", year="2017", month="Sep", day="07", volume="19", number="9", pages="e292", keywords="collaborative tagging", keywords="folksonomy", keywords="knowledge organization", keywords="self-management", keywords="body listening", keywords="body awareness", abstract="Background: Body listening, described as the act of paying attention to the body's signals and cues, can be an important component of long-term health management. Objective: The aim of this study was to introduce and evaluate the Body Listening Project, an innovative effort to engage the public in the creation of a public resource---to leverage collective wisdom in the health domain. This project involved a website where people could contribute their experiences of and dialogue with others concerning body listening and self-management. This article presents an analysis of the tags contributed, with a focus on the value of these tags for knowledge organization and incorporation into consumer-friendly health information retrieval systems. Methods: First, we performed content analysis of the tags contributed, identifying a set of categories and refining the relational structure of the categories to develop a preliminary classification scheme, the Body Listening and Self-Management Taxonomy. Second, we compared the concepts in the Body Listening and Self-Management Taxonomy with concepts that were automatically identified from an extant health knowledge resource, the Unified Medical Language System (UMLS), to better characterize the information that participants contributed. Third, we employed visualization techniques to explore the concept space of the tags. A correlation matrix, based on the extent to which categories tended to be assigned to the same tags, was used to study the interrelatedness of the taxonomy categories. Then a network visualization was used to investigate structural relationships among the categories in the taxonomy. Results: First, we proposed a taxonomy called the Body Listening and Self-Management Taxonomy, with four meta-level categories: (1) health management strategies, (2) concepts and states, (3) influencers, and (4) health-related information behavior. This taxonomy could inform future efforts to organize knowledge and content of this subject matter. Second, we compared the categories from this taxonomy with the UMLS concepts that were identified. Though the UMLS offers benefits such as speed and breadth of coverage, the Body Listening and Self-Management Taxonomy is more consumer-centric. Third, the correlation matrix and network visualization demonstrated that there are natural areas of ambiguity and semantic relatedness in the meanings of the concepts in the Body Listening and Self-Management Taxonomy. Use of these visualizations can be helpful in practice settings, to help library and information science practitioners understand and resolve potential challenges in classification; in research, to characterize the structure of the conceptual space of health management; and in the development of consumer-centric health information retrieval systems. Conclusions: A participatory platform can be employed to collect data concerning patient experiences of health management, which can in turn be used to develop new health knowledge resources or augment existing ones, as well as be incorporated into consumer-centric health information systems. ", doi="10.2196/jmir.7673", url="http://www.jmir.org/2017/9/e292/", url="http://www.ncbi.nlm.nih.gov/pubmed/28882809" } @Article{info:doi/10.2196/jopm.8949, author="Belkora, K. Jeffrey and Naguit, Marijoyce and Stupar, Lauren and Wiley, James and Volz, Shelley and O'Donnell, Sara", title="The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting", journal="J Participat Med", year="2017", month="Aug", day="22", volume="9", number="1", pages="e15", keywords="Visit preparation", keywords="self-efficacy", keywords="anxiety", keywords="question list", keywords="patient support", keywords="community-based participatory research", keywords="psycho-oncology.", abstract="Background: A community-based organization implemented an evidence-based intervention to help rural cancer patients list questions before oncology visits. Objective: Was the question-listing intervention effective in reducing anxiety and increasing decision self-efficacy? Methods: The organization surveyed patients on decision self-efficacy (273 respondents, 99\% response rate) and anxiety (190, 68\%) before and after question-listing interventions delivered from 2006 -- 2011. We analyzed responses using two-sided paired t-tests at 5\% significance and conducted linear regression to identify significant predictors of change. We examined predictors related to the patient (location, demographics, disease status and baseline decision self-efficacy and anxiety); the intervention (including interventionist case volume); and the visit (including type of doctor seen). Results: Question-listing was associated with higher mean decision self-efficacy (2.70/3.43 pre/post, 1-4 min-max, P<.001) and lower mean anxiety (7.26/5.87, 1-10 min-max, P<.001). Significant predictors of change in decision self-efficacy included: patient location; interventionist case volume; baseline decision self-efficacy and anxiety. Higher baseline anxiety was also associated with reductions in anxiety. Conclusions: In a sustained community-based implementation, the intervention helped patients prepare for oncology visits. Patients reported higher self-efficacy and lower anxiety. ", doi="10.2196/jopm.8949", url="http://jopm.jmir.org/2017/1/e15/", url="http://www.ncbi.nlm.nih.gov/pubmed/36262006" } @Article{info:doi/10.2196/jmir.8049, author="Utengen, Audun and Rouholiman, Dara and Gamble, G. Jamison and Grajales III, Jose Francisco and Pradhan, Nisha and Staley, C. Alicia and Bernstein, Liza and Young, D. Sean and Clauson, A. Kevin and Chu, F. Larry", title="Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Researchers", journal="J Med Internet Res", year="2017", month="Aug", day="17", volume="19", number="8", pages="e280", keywords="social media", keywords="patients", keywords="physicians", keywords="patient participation", keywords="congresses as topic", keywords="social networking, network analysis", abstract="Background: Health care conferences present a unique opportunity to network, spark innovation, and disseminate novel information to a large audience, but the dissemination of information typically stays within very specific networks. Social network analysis can be adopted to understand the flow of information between virtual social communities and the role of patients within the network. Objective: The purpose of this study is to examine the impact engaged patients bring to health care conference social media information flow and how they expand dissemination and distribution of tweets compared to other health care conference stakeholders such as physicians and researchers. Methods: From January 2014 through December 2016, 7,644,549 tweets were analyzed from 1672 health care conferences with at least 1000 tweets who had registered in Symplur's Health Care Hashtag Project from 2014 to 2016. The tweet content was analyzed to create a list of the top 100 influencers by mention from each conference, who were then subsequently categorized by stakeholder group. Multivariate linear regression models were created using stepwise function building to identify factors explaining variability as predictor variables for the model in which conference tweets were taken as the dependent variable. Results: Inclusion of engaged patients in health care conference social media was low compared to that of physicians and has not significantly changed over the last 3 years. When engaged patient voices are included in health care conferences, they greatly increase information flow as measured by total tweet volume (beta=301.6) compared to physicians (beta=137.3, P<.001), expand propagation of information tweeted during a conference as measured by social media impressions created (beta=1,700,000) compared to physicians (beta=270,000, P<.001), and deepen engagement in the tweet conversation as measured by replies to their tweets (beta=24.4) compared to physicians (beta=5.5, P<.001). Social network analysis of hubs and authorities revealed that patients had statistically significant higher hub scores (mean 8.26{\texttimes}10-4, SD 2.96{\texttimes}10-4) compared to other stakeholder groups' Twitter accounts (mean 7.19{\texttimes}10-4, SD 3.81{\texttimes}10-4; t273.84=4.302, P<.001). Conclusions: Although engaged patients are powerful accelerators of information flow, expanders of tweet propagation, and greatly deepen engagement in conversation of tweets on social media of health care conferences compared to physicians, they represent only 1.4\% of the stakeholder mix of the top 100 influencers in the conversation. Health care conferences that fail to engage patients in their proceedings may risk limiting their engagement with the public, disseminating scientific information to a narrow community and slowing flow of information across social media channels. ", doi="10.2196/jmir.8049", url="http://www.jmir.org/2017/8/e280/", url="http://www.ncbi.nlm.nih.gov/pubmed/28818821" } @Article{info:doi/10.2196/jmir.7079, author="Oerlemans, Simone and Arts, P. Lindy and Horevoorts, J. Nicole and van de Poll-Franse, V. Lonneke", title="``Am I normal?'' The Wishes of Patients With Lymphoma to Compare Their Patient-Reported Outcomes With Those of Their Peers", journal="J Med Internet Res", year="2017", month="Aug", day="15", volume="19", number="8", pages="e288", keywords="lymphoma", keywords="health-related quality of life", keywords="personalized feedback", keywords="self-care", keywords="access to information", keywords="population-based research", abstract="Background: Providing feedback to patients on their patient-reported outcomes (PROs) can help patients in monitoring their functioning and symptoms and may help empower them. Objective: The objective of this study was to investigate whether patients with lymphoma wished to receive PRO feedback, including the option to compare their scores with those of their peers, and how this feedback was evaluated. Methods: We invited 64 patients participating in a lymphoma cohort who were eligible for a follow-up questionnaire and gave them the option to receive PRO feedback. Patients completed questions about health-related quality of life (HRQoL) and symptoms. PRO feedback was provided via bar charts. Results: Of the 64 invited patients, 45 participated (response rate 70\%) and 36 of those (80\%) wished to receive PRO feedback. The vast majority (34/36, 94\%) compared their scores with those of a lymphoma reference cohort, and 64\% (23/36) compared their score with those of a normative population without cancer. All patients wished to receive feedback on their HRQoL, and 29 (81\%) to 33 (92\%) wanted feedback on their functioning, fatigue, neuropathy, anxiety, and depressive symptoms. Of the 36 participants wishing to receive PRO feedback, 35 (97\%) viewed it as being useful, with reassurance and knowledge about their own functioning in relation to what is ``normal'' being the most frequently mentioned reasons. Conclusions: A high number of patients with lymphoma wished to receive PRO feedback. Patients reported the comparison of their scores versus a lymphoma reference cohort as most valuable. Further research should investigate whether PRO feedback could increase empowerment and possibly improve HRQoL. ", doi="10.2196/jmir.7079", url="http://www.jmir.org/2017/8/e288/", url="http://www.ncbi.nlm.nih.gov/pubmed/28811271" } @Article{info:doi/10.2196/jopm.8756, author="Leese, Jenny and Kerr, Sheila and McKinnon, Annette and Carruthers, Erin and Backman, Catherine and Li, Linda and Townsend, Anne", title="Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event", journal="J Participat Med", year="2017", month="Aug", day="04", volume="9", number="1", pages="e13", keywords="Patient engagement", keywords="research collaboration", keywords="knowledge translation", keywords="patient-led", doi="10.2196/jopm.8756", url="http://jopm.jmir.org/2017/1/e13/", url="http://www.ncbi.nlm.nih.gov/pubmed/36262007" } @Article{info:doi/10.2196/jmir.8111, author="Hjollund, Ingvar Niels Henrik", title="Individual Prognosis of Symptom Burden and Functioning in Chronic Diseases: A Generic Method Based on Patient-Reported Outcome (PRO) Measures", journal="J Med Internet Res", year="2017", month="Aug", day="01", volume="19", number="8", pages="e278", keywords="chronic disease", keywords="cohort studies", keywords="depression", keywords="longitudinal studies", keywords="patient-reported outcome measures", keywords="prognosis", keywords="recovery of function", keywords="repeated measurements", keywords="stroke", keywords="surveys and questionnaires", keywords="symptom assessment", abstract="Background: Information to the patient about the long-term prognosis of symptom burden and functioning is an integrated part of clinical practice, but relies mostly on the clinician's personal experience. Relevant prognostic models based on patient-reported outcome (PRO) data with repeated measurements are rarely available. Objective: The aim was to describe a generic method for individual long-term prognosis of symptom burden and functioning that implied few statistical presumptions, to evaluate an implementation for prognosis of depressive symptoms in stroke patients and to provide open access to a Web-based prototype of this implementation for individual use. Methods: The method used to describe individual prognosis of a PRO outcome was based on the selection of a specific subcohort of patients who have the same score as the patient in question at the same time (eg, after diagnosis or treatment start), plus or minus one unit of minimal clinically important difference. This subcohort's experienced courses were then used to provide quantitative measures of prognosis over time. A cohort of 1404 stroke patients provided data for a simulation study and a prototype for individual use. Members of the cohort answered questionnaires every 6 months for 3.5 years. Depressive symptoms were assessed by the Hospital Anxiety and Depression Scale (HADS) and a single item from the SF-12 (MH4) health survey. Four approaches were compared in a simulation study in which the prognosis for each member of the cohort was individually assessed. Results: The mean standard deviations were 40\% to 70\% higher in simulated scores. Mean errors were close to zero, and mean absolute errors were between 0.46 and 0.66 SD in the four approaches. An approach in which missing HADS scores were estimated from the single-item SF-12 MH4 performed marginally better than methods restricted to questionnaires with a genuine HADS score, which indicates that data collected with shorter questionnaires (eg, in clinical practice) may be used together with longer versions with the full scale, given that the design includes at least two simultaneous measurements of the full scale and the surrogate measure. Conclusions: This is the first description and implementation of a nonparametric method for individual PRO-based prognosis. Given that relevant PRO data have been collected longitudinally, the method may be applied to other patient groups and to any outcome related to symptom burden and functioning. This initial implementation has been deliberately made simple, and further elaborations as well as the usability and clinical validity of the method will be scrutinized in clinical practice. An implementation of the prototype is available online at www.prognosis.dk. ", doi="10.2196/jmir.8111", url="http://www.jmir.org/2017/8/e278/", url="http://www.ncbi.nlm.nih.gov/pubmed/28765099" } @Article{info:doi/10.2196/jmir.7721, author="Assadi, Vahid and Hassanein, Khaled", title="Consumer Adoption of Personal Health Record Systems: A Self-Determination Theory Perspective", journal="J Med Internet Res", year="2017", month="Jul", day="27", volume="19", number="7", pages="e270", keywords="health records, personal", keywords="health care information systems", keywords="online systems", keywords="technology", keywords="intention", keywords="physician patient relationships", keywords="personal autonomy", keywords="psychological theory", keywords="social theory", keywords="behavior", abstract="Background: Personal Health Records (PHR) systems provide individuals with access and control over their health information and consequently can support individuals in becoming active participants, rather than passive recipients, in their own care process. In spite of numerous benefits suggested for consumers' utilizing PHR systems, research has shown that such systems are not yet widely adopted or well known to consumers. Bearing in mind the potential benefits of PHRs to consumers and their potential interest in these systems---and that similar to any other type of information system, adoption is a prerequisite for realizing the potential benefits of PHR systems---research is needed to understand how to enhance the adoption rates for PHR systems. Objective: This research seeks to understand how individuals' intentions to adopt PHR systems are affected by their self-determination in managing their own health---the extent of their ability to take an active role in managing their own health. As such, this research aims to develop and empirically validate a theoretical model that explains PHR systems adoption by the general public through the integration of theories from the information systems and psychology literatures. Methods: This research employs a cross-sectional survey method targeted at the Canadian general public without any prior experience in using PHR systems. A partial least squares approach to structural equation modeling was used to validate the proposed research model of this study (N=159). Results: Individuals with higher levels of ability to manage their own health (self-determination) are more likely to adopt PHR systems since they have more positive perceptions regarding the use of such systems. Further, such self-determination is fueled by autonomy support from consumers' physicians as well as the consumers' personality trait of autonomy orientation. Conclusions: This study advances our theoretical understanding of PHR systems adoption. It also contributes to practice by providing insightful implications for designing, promoting, and facilitating the use of PHR systems among consumers. ", doi="10.2196/jmir.7721", url="http://www.jmir.org/2017/7/e270/", url="http://www.ncbi.nlm.nih.gov/pubmed/28751301" } @Article{info:doi/10.2196/jmir.7538, author="Emmert, Martin and Sauter, Lisa and Jablonski, Lisa and Sander, Uwe and Taheri-Zadeh, Fatemeh", title="Do Physicians Respond to Web-Based Patient Ratings? An Analysis of Physicians' Responses to More Than One Million Web-Based Ratings Over a Six-Year Period", journal="J Med Internet Res", year="2017", month="Jul", day="26", volume="19", number="7", pages="e275", keywords="Internet", keywords="online ratings", keywords="doctor-patient communication", keywords="public reporting", keywords="transparency", abstract="Background: Physician-rating websites (PRWs) may lead to quality improvements in case they enable and establish a peer-to-peer communication between patients and physicians. Yet, we know little about whether and how physicians respond on the Web to patient ratings. Objective: The objective of this study was to describe trends in physicians' Web-based responses to patient ratings over time, to identify what physician characteristics influence Web-based responses, and to examine the topics physicians are likely to respond to. Methods: We analyzed physician responses to more than 1 million patient ratings displayed on the German PRW, jameda, from 2010 to 2015. Quantitative analysis contained chi-square analyses and the Mann-Whitney U test. Quantitative content techniques were applied to determine the topics physicians respond to based on a randomly selected sample of 600 Web-based ratings and corresponding physician responses. Results: Overall, physicians responded to 1.58\% (16,640/1,052,347) of all Web-based ratings, with an increasing trend over time from 0.70\% (157/22,355) in 2010 to 1.88\% (6377/339,919) in 2015. Web-based ratings that were responded to had significantly worse rating results than ratings that were not responded to (2.15 vs 1.74, P<.001). Physicians who respond on the Web to patient ratings differ significantly from nonresponders regarding several characteristics such as gender and patient recommendation results (P<.001 each). Regarding scaled-survey rating elements, physicians were most likely to respond to the waiting time within the practice (19.4\%, 99/509) and the time spent with the patient (18.3\%, 110/600). Almost one-third of topics in narrative comments were answered by the physicians (30.66\%, 382/1246). Conclusions: So far, only a minority of physicians have taken the chance to respond on the Web to patient ratings. This is likely because of (1) the low awareness of PRWs among physicians, (2) the fact that only a few PRWs enable physicians to respond on the Web to patient ratings, and (3) the lack of an active moderator to establish peer-to-peer communication. PRW providers should foster more frequent communication between the patient and the physician and encourage physicians to respond on the Web to patient ratings. Further research is needed to learn more about the motivation of physicians to respond or not respond to Web-based patient ratings. ", doi="10.2196/jmir.7538", url="http://www.jmir.org/2017/7/e275/", url="http://www.ncbi.nlm.nih.gov/pubmed/28747292" } @Article{info:doi/10.2196/mhealth.6829, author="H{\"a}lleberg Nyman, Maria and Frank, Catharina and Langius-Ekl{\"o}f, Ann and Blomberg, Karin and Sundberg, Kay and Wengstr{\"o}m, Yvonne", title="Patients' Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study", journal="JMIR Mhealth Uhealth", year="2017", month="Jul", day="26", volume="5", number="7", pages="e107", keywords="patient participation", keywords="prostate cancer", keywords="radiotherapy", keywords="smartphone", abstract="Background: Patients with prostate cancer are often cared for as outpatients during radiotherapy, which can be an aggravating circumstance for patient participation. There is a need to evaluate whether an interactive smartphone app could enable participation in care, specifically during treatment for prostate cancer. The interactive app (Interaktor) used in this study is developed in codesign with patients and health care professionals; it includes daily reports of symptoms, a risk assessment model, evidence-based self-care advice, along with the provision of immediate access to clinicians. Objective: The aim of this study was to explore how patients with prostate cancer perceived their participation with or without the support of the smartphone app during radiotherapy. Methods: A total of 28 prostate cancer patients receiving adjuvant radiotherapy were interviewed about their perceived participation in their own care. All the patients interviewed in this study participated in an intervention study where the control group received standard care that comprised having access to a contact nurse to turn to with any concerns during their treatment. In addition to standard care, the patients in the intervention group received the app downloaded in a smartphone. The patients' age ranged between 57 and 77 years; 17 patients used the smartphone app. The interviews were analyzed with directed qualitative content analysis. Results: The four dimensions of patient participation, which include mutual participation, fight for participation, requirement for participation, and participation in getting basic needs satisfied, were confirmed as valid perspectives in the interviews with the patients with prostate cancer, irrespective of whether they used the smartphone app. However, the patients who had used the smartphone app described it as a facilitating factor, especially for mutual participation. Conclusions: Using innovative ways to communicate with patients, such as an interactive app for symptom management with contact with health care in real time, can successfully help achieve increased patient participation in care. ", doi="10.2196/mhealth.6829", url="http://mhealth.jmir.org/2017/7/e107/", url="http://www.ncbi.nlm.nih.gov/pubmed/28747294" } @Article{info:doi/10.2196/jmir.7212, author="Gerard, Macda and Fossa, Alan and Folcarelli, H. Patricia and Walker, Jan and Bell, K. Sigall", title="What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information", journal="J Med Internet Res", year="2017", month="Jul", day="14", volume="19", number="7", pages="e237", keywords="patient participation", keywords="quality improvement", keywords="electronic health records", keywords="patient portals", abstract="Background: Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking. Objective: We aimed to learn more about patient experiences with reading and providing feedback on their visit notes. Methods: We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses ($\kappa$=.74). Results: Patients and care partners submitted 260 reports. Among these, 98.5\% (256/260) of reports indicated that the reporting tool was valuable, and 68.8\% (179/260) highlighted what patients liked about reading notes and the OpenNotes patient reporting tool process. We identified 4 themes describing what patients value about note content: confirm and remember next steps, quicker access and results, positive emotions, and sharing information with care partners; and 4 themes about both patients' use of notes and the feedback tool: accuracy and correcting mistakes, partnership and engagement, bidirectional communication and enhanced education, and importance of feedback. Conclusions: Patients and care partners who read notes and submitted feedback reported greater engagement and the desire to help clinicians improve note accuracy. Aspects of what patients like about using both notes as well as a feedback tool highlight personal, relational, and safety benefits. Future efforts to engage patients through the EHR may be guided by what patients value, offering opportunities to strengthen care partnerships between patients and clinicians. ", doi="10.2196/jmir.7212", url="http://www.jmir.org/2017/7/e237/", url="http://www.ncbi.nlm.nih.gov/pubmed/28710055" } @Article{info:doi/10.2196/jopm.8846, author="Wildevuur, Sabine and Thomese, Fleur and Ferguson, Julie and Klink, Ab", title="Information and Communication Technologies to Support Chronic Disease Self-Management: Preconditions for Enhancing the Partnership in Person-Centered Care", journal="J Participat Med", year="2017", month="Jul", day="07", volume="9", number="1", pages="e14", keywords="person-centered care", keywords="chronic disease management", keywords="cancer", keywords="self-management", keywords="partnership", keywords="information", keywords="communication", keywords="technologies", abstract="Objective: In order to alleviate the pressure on health care systems exerted by the growing prevalence of chronic diseases, information and communication technologies (ICT) are being introduced to enable self-management of chronic diseases by supporting partnerships between patients and health care professionals. This move towards chronic disease self-management is accompanied by a shift in focus on integrating the patient with his or her perceptions on the chronic disease as a full-fledged partner into the health care system. This new perspective has been described as ``person-centered care'' (PCC). To date, information and communication technologies only partially build on the principles of PCC. This paper examines the preconditions of ICT to enable a person-centered approach to chronic disease management. Methods: Using cancer treatment as a case study for ICT-enabled PCC, we conducted a comparative analysis of thirteen scientific studies on interventions presented as ICT-enabled PCC for cancer treatment, to answer the research question: What are the preconditions of ICT-enabled PCC in chronic disease management? Based on the intended and actual outcomes, we distilled in several analytic steps the preconditions of ICT-enabled PCC for chronic disease self-management. Results: We distinguished four user-related preconditions of ICT-enabled PCC: (shared) decision making, personalized ICT, health-related quality of life, and efficiency. Conclusions: We argue that these four preconditions together can improve people's self-management of chronic diseases by strengthening the partnership between the patient and the healthcare professional. Moreover, the study revealed a discrepancy between intended and reported actual outcomes in terms of realizing person-centered care. ", doi="10.2196/jopm.8846", url="http://jopm.jmir.org/2017/1/e14/", url="http://www.ncbi.nlm.nih.gov/pubmed/36262005" } @Article{info:doi/10.2196/jmir.7736, author="Guendelman, Sylvia and Broderick, Andrew and Mlo, Hmellisa and Gemmill, Alison and Lindeman, David", title="Listening to Communities: Mixed-Method Study of the Engagement of Disadvantaged Mothers and Pregnant Women With Digital Health Technologies", journal="J Med Internet Res", year="2017", month="Jul", day="05", volume="19", number="7", pages="e240", keywords="digital divide", keywords="health information management", keywords="consumer health information", keywords="pregnant women", keywords="mothers", abstract="Background: US health care providers are increasingly demanding patient engagement with digital health technologies to enroll in care, access personal health information, communicate with providers, and monitor their own health. Such engagement may be difficult for disadvantaged populations who may have limited health literacy, time constraints, or competing priorities. Objective: We aimed to understand the extent of adoption and use of digital health tools and to identify key perceived psychological motivators of technology use among disadvantaged first-time pregnant women and mothers of young children. Methods: We recruited women from health organizations serving low-income communities in the Midwest and on the East and West coasts. A total of 92 women participated in 14 focus groups. During each session, we administered worksheets that measured 3 utilization outcomes: the number of recent Web-based health-seeking activities, current use of digital health-management practices (eg, accessing personal health information, communicating with providers, and scheduling appointments), and potential adoption of digital health-management tools among low users or nonusers. Responses to the worksheets and to a pre-focus group survey on demographics, technology access, and motivators of use were examined to create user profiles. Separate regression models identified the motivators (eHealth literacy, internal health orientation, and trust in digital information) associated with these outcomes. Qualitative data were incorporated to illustrate the worksheet responses. Results: Whereas 97\% of the participants reported that they had searched for health information on the Internet in the past year, 42\% did not engage in digital health-management practices. Among the low users and nonusers, 49\% expressed interest in future adoption of digital health tools. Web-based health information-seeking activities were associated with digital health-management practices (P<.001). When controlling for covariates, eHealth literacy was positively correlated with the number of Web-based health-seeking activities (beta=.03, 95\% CI 0.00-0.07). However, an internal health orientation was a much stronger correlate of digital health-management practices (beta=.13, 95\% CI 0.02-0.24), whereas trust in digital information increased the odds of potential adoption (vs no adoption) in adjusted models (OR 5.21, 95\% CI 0.84-32.53). Demographic characteristics were not important drivers of digital health use and few differences distinguished use among mothers and pregnant women. Conclusions: Seeking health information on the Internet may be an important gateway toward engaging in digital health-management practices. Notably, different consumer motivators influence digital health tool use. The relative contributions of each must be explored to design tools and interventions that enhance competencies for the management of self and child health among disadvantaged mothers and pregnant women. Unless we address disparities in digital health tool use, benefits from their use will accrue predominantly to individuals with the resources and skills to use technology effectively. ", doi="10.2196/jmir.7736", url="http://www.jmir.org/2017/7/e240/", url="http://www.ncbi.nlm.nih.gov/pubmed/28679489" } @Article{info:doi/10.2196/jmir.7156, author="Guo, Haihong and Na, Xu and Hou, Li and Li, Jiao", title="Classifying Chinese Questions Related to Health Care Posted by Consumers Via the Internet", journal="J Med Internet Res", year="2017", month="Jun", day="20", volume="19", number="6", pages="e220", keywords="classification", keywords="natural language processing", keywords="hypertension", keywords="consumer health information", abstract="Background: In question answering (QA) system development, question classification is crucial for identifying information needs and improving the accuracy of returned answers. Although the questions are domain-specific, they are asked by non-professionals, making the question classification task more challenging. Objective: This study aimed to classify health care--related questions posted by the general public (Chinese speakers) on the Internet. Methods: A topic-based classification schema for health-related questions was built by manually annotating randomly selected questions. The Kappa statistic was used to measure the interrater reliability of multiple annotation results. Using the above corpus, we developed a machine-learning method to automatically classify these questions into one of the following six classes: Condition Management, Healthy Lifestyle, Diagnosis, Health Provider Choice, Treatment, and Epidemiology. Results: The consumer health question schema was developed with a four-hierarchical-level of specificity, comprising 48 quaternary categories and 35 annotation rules. The 2000 sample questions were coded with 2000 major codes and 607 minor codes. Using natural language processing techniques, we expressed the Chinese questions as a set of lexical, grammatical, and semantic features. Furthermore, the effective features were selected to improve the question classification performance. From the 6-category classification results, we achieved an average precision of 91.41\%, recall of 89.62\%, and F1 score of 90.24\%. Conclusions: In this study, we developed an automatic method to classify questions related to Chinese health care posted by the general public. It enables Artificial Intelligence (AI) agents to understand Internet users' information needs on health care. ", doi="10.2196/jmir.7156", url="http://www.jmir.org/2017/6/e220/", url="http://www.ncbi.nlm.nih.gov/pubmed/28634156" } @Article{info:doi/10.2196/jmir.6676, author="Allot, Alexis and Chennen, Kirsley and Nevers, Yannis and Poidevin, Laetitia and Kress, Arnaud and Ripp, Raymond and Thompson, Dawn Julie and Poch, Olivier and Lecompte, Odile", title="MyGeneFriends: A Social Network Linking Genes, Genetic Diseases, and Researchers", journal="J Med Internet Res", year="2017", month="Jun", day="16", volume="19", number="6", pages="e212", keywords="health care", keywords="social media", keywords="genetic variation", keywords="hereditary disease", abstract="Background: The constant and massive increase of biological data offers unprecedented opportunities to decipher the function and evolution of genes and their roles in human diseases. However, the multiplicity of sources and flow of data mean that efficient access to useful information and knowledge production has become a major challenge. This challenge can be addressed by taking inspiration from Web 2.0 and particularly social networks, which are at the forefront of big data exploration and human-data interaction. Objective: MyGeneFriends is a Web platform inspired by social networks, devoted to genetic disease analysis, and organized around three types of proactive agents: genes, humans, and genetic diseases. The aim of this study was to improve exploration and exploitation of biological, postgenomic era big data. Methods: MyGeneFriends leverages conventions popularized by top social networks (Facebook, LinkedIn, etc), such as networks of friends, profile pages, friendship recommendations, affinity scores, news feeds, content recommendation, and data visualization. Results: MyGeneFriends provides simple and intuitive interactions with data through evaluation and visualization of connections (friendships) between genes, humans, and diseases. The platform suggests new friends and publications and allows agents to follow the activity of their friends. It dynamically personalizes information depending on the user's specific interests and provides an efficient way to share information with collaborators. Furthermore, the user's behavior itself generates new information that constitutes an added value integrated in the network, which can be used to discover new connections between biological agents. Conclusions: We have developed MyGeneFriends, a Web platform leveraging conventions from popular social networks to redefine the relationship between humans and biological big data and improve human processing of biomedical data. MyGeneFriends is available at lbgi.fr/mygenefriends. ", doi="10.2196/jmir.6676", url="http://www.jmir.org/2017/6/e212/", url="http://www.ncbi.nlm.nih.gov/pubmed/28623182" } @Article{info:doi/10.2196/jmir.7489, author="Lee, Kenneth and Hoti, Kreshnik and Hughes, David Jeffery and Emmerton, Lynne", title="Dr Google Is Here to Stay but Health Care Professionals Are Still Valued: An Analysis of Health Care Consumers' Internet Navigation Support Preferences", journal="J Med Internet Res", year="2017", month="Jun", day="14", volume="19", number="6", pages="e210", keywords="health care", keywords="information seeking behavior", keywords="Internet", keywords="chronic disease", keywords="patients", keywords="surveys", abstract="Background: The Internet offers great opportunities for consumers to be informed about their health. However, concerns have been raised regarding its impact on the traditional health consumer-health professional relationship. Our recent survey of 400 Australian adults identified that over half of consumers required some form of navigational support in locating appropriate Web-based health information. We propose that support provided by health professionals would be preferred by consumers; this preference is regardless of whether consumers have a need for navigational support. Secondary analysis of the survey dataset is presented here to quantify consumer-reported support preferences and barriers when navigating Web-based health information. Objective: We aimed to quantitatively identify consumers' support preferences for locating Web-based health information and their barriers when navigating Web-based health information. We also aimed to compare such preferences and barriers between consumers identified as needing and not needing support when locating Web-based health information. Methods: Chi-square ($\chi$2) tests identified whether each listed support preference differed between subgroups of consumers classified as needing (n=205, 51.3\%) or not needing (n=195, 48.8\%) navigational support; degree of association, via phi coefficient ($\phi$) tests, were also considered to ascertain the likely practical significance of any differences. This was repeated for each listed barrier. Free-text responses regarding additional support preferences were descriptively analyzed and compared with the quantitative findings to provide a richer understanding of desired support for health information searches. Results: Of the 400 respondents, the most preferred mode of navigational support was involvement of health professionals; this was reported by participants identified as needing and not needing navigational support. While there was a significant difference between groups, the degree of association was small ($\chi$21 [N=400]=13.2; P<.001; $\phi$=.18). Qualitative data from the free-text responses supported consumers' desire for health professional involvement. The two most commonly reported barriers when navigating desired Web-based health information were (1) volume of available information and (2) inconsistency of information between sources; these were reported by participants with and without a need for navigational support. While participants identified with a need for navigational support were more likely to report volume ($\chi$21 [N=387]= 4.40; P=.04; $\phi$=.11) and inconsistency of information ($\chi$21 [N=387]= 16.10, P<.001, $\phi$=.20) as barriers, the degrees of association were small to moderate. Conclusions: Despite concerns in the literature that the popularity of the Internet could compromise the health consumer-health professional relationship, our findings suggest the contrary. Our findings showed that health professionals were found to be the most commonly preferred mode of navigational support, even among consumers classified as not needing navigational support. Further research into how health professionals could assist consumers with Web-based health information seeking could strengthen the health consumer-health professional relationship amidst the growing use of ``Dr Google.'' ", doi="10.2196/jmir.7489", url="http://www.jmir.org/2017/6/e210/", url="http://www.ncbi.nlm.nih.gov/pubmed/28615156" } @Article{info:doi/10.2196/jmir.6915, author="Denneson, M. Lauren and Cromer, Risa and Williams, B. Holly and Pisciotta, Maura and Dobscha, K. Steven", title="A Qualitative Analysis of How Online Access to Mental Health Notes Is Changing Clinician Perceptions of Power and the Therapeutic Relationship", journal="J Med Internet Res", year="2017", month="Jun", day="14", volume="19", number="6", pages="e208", keywords="eHealth", keywords="physician-patient relations", keywords="mental health", keywords="patient-centered care", abstract="Background: As part of the national OpenNotes initiative, the Veterans Health Administration (VHA) provides veterans online access to their clinical progress notes, raising concern in mental health settings. Objective: The aim of this study was to examine the perspectives and experiences of mental health clinicians with OpenNotes to better understand how OpenNotes may be affecting mental health care. Methods: We conducted individual semi-structured interviews with 28 VHA mental health clinicians and nurses. Transcripts were analyzed using a thematic analysis approach, which allows for both inductive and deductive themes to be explored using an iterative, constant comparative coding process. Results: OpenNotes is changing VHA mental health care in ways that mental health clinicians perceive as both challenging and beneficial. At the heart of these changes is a shifting power distribution within the patient-clinician relationship. Some clinicians view OpenNotes as an opportunity to better partner with patients, whereas others feel that it has the potential to undo the therapeutic relationship. Many clinicians are uncomfortable with OpenNotes, but acknowledge that this discomfort could both improve and diminish care and documentation practices. Specifically, we found that (1) OpenNotes is empowering patients, (2) OpenNotes is affecting how clinicians build and maintain the therapeutic relationship, and (3) mental health clinicians are adjusting their practices to protect patients and themselves from adverse consequences of OpenNotes. Conclusions: Our findings suggest that future research should monitor whether OpenNotes notes facilitates stronger patient-clinician relationships, enhancing patient-centered mental health care, or diminishes the quality of mental health care through disruptions in the therapeutic relationship and reduced documentation. ", doi="10.2196/jmir.6915", url="http://www.jmir.org/2017/6/e208/", url="http://www.ncbi.nlm.nih.gov/pubmed/28615152" } @Article{info:doi/10.2196/jmir.6336, author="Mueller, Julia and Jay, Caroline and Harper, Simon and Todd, Chris", title="The Role of Web-Based Health Information in Help-Seeking Behavior Prior to a Diagnosis of Lung Cancer: A Mixed-Methods Study", journal="J Med Internet Res", year="2017", month="Jun", day="08", volume="19", number="6", pages="e189", keywords="help seeking", keywords="online health information", keywords="health information seeking", keywords="lung cancer", keywords="symptom appraisal", abstract="Background: Delays to diagnosis in lung cancer can lead to reduced chance of survival, and patients often wait for several months before presenting symptoms. The time between first symptom recognition until diagnosis has been theorized into three intervals: symptom appraisal, help-seeking, and diagnostic interval (here: ``pathway to diagnosis''). Interventions are needed to reduce delays to diagnosis in lung cancer. The Web has become an important lay health information source and could potentially play a role in this pathway to diagnosis. Objective: Our overall aim was to gain a preliminary insight into whether Web-based information plays a role in the pathway to diagnosis in lung cancer in order to assess whether it may be possible to leverage this information source to reduce delays to diagnosis. Methods: Patients diagnosed with lung cancer in the 6 months before study entry completed a survey about whether (and how, if yes) they had used the Web to appraise their condition prior to diagnosis. Based on survey responses, we purposively sampled patients and their next-of-kin for semistructured interviews (24 interviews; 33 participants). Interview data were analyzed qualitatively using Framework Analysis in the context of the pathway to diagnosis model. Results: A total of 113 patients completed the survey (age: mean 67.0, SD 8.8 years). In all, 20.4\% (23/113) reported they or next-of-kin had researched their condition online before the diagnosis. The majority of searches (20/23, 87.0\%) were conducted by or with the help of next-of-kin. Interview results suggest that patients and next-of-kin perceived an impact of the information found online on all three intervals in the time to diagnosis. In the appraisal interval, participants used online information to evaluate symptoms and possible causes. In the help-seeking interval, the Web was used to inform the decision of whether to present to health services. In the diagnostic interval, it was used to evaluate health care professionals' advice, to support requests for further investigation of symptoms, and to understand medical jargon. Within this interval, we identified two distinct subintervals (before/after relevant diagnostic tests were initiated), in which the Web reportedly played different roles. Conclusions: Because only 20.4\% of the sample reported prediagnosis Web searches, it seems the role of the Web before diagnosis of lung cancer is at present still limited, but this proportion is likely to increase in the future, when barriers such as unfamiliarity with technology and unwillingness to be informed about one's own health are likely to decrease. Participants' perceptions suggest that the Web can have an impact on all three intervals in the pathway to diagnosis. Thus, the Web may hold the potential to reduce delays in the diagnostic process, and this should be explored in future research and interventions. Our results also suggest a division of the diagnostic interval into two subintervals may be useful. ", doi="10.2196/jmir.6336", url="http://www.jmir.org/2017/6/e189/", url="http://www.ncbi.nlm.nih.gov/pubmed/28596146" } @Article{info:doi/10.2196/mhealth.7040, author="Goetz, Maren and M{\"u}ller, Mitho and Matthies, Maria Lina and Hansen, Jenny and Doster, Anne and Szabo, Akos and Pauluschke-Fr{\"o}hlich, Jan and Abele, Harald and Sohn, Christof and Wallwiener, Markus and Wallwiener, Stephanie", title="Perceptions of Patient Engagement Applications During Pregnancy: A Qualitative Assessment of the Patient's Perspective", journal="JMIR Mhealth Uhealth", year="2017", month="May", day="26", volume="5", number="5", pages="e73", keywords="pregnancy", keywords="telemedicine", keywords="mobile applications", keywords="information procurement", keywords="patient participation", keywords="qualitative research", abstract="Background: With growing demand for medical information and health applications in pregnancy, the potential of electronic health (eHealth) and mobile health (mHealth) solutions in clinical care is increasingly unfolding. However, we still do not know how pregnant women engage with mobile apps, how such apps impact routine medical care, and whether benefit expectations are met. Whereas recent research has raised the subject of user distribution and analyzed the content of pregnancy applications, there is still a significant knowledge gap regarding what pregnant women like and dislike about pregnancy tools, along with how such interventions could be improved. Objective: The aim of the study was to examine the perceptions and expectations of mobile and Web-based patient-engagement pregnancy applications. We assessed usability requirements, general acceptance of eHealth, and the impact of eHealth and mHealth pregnancy applications on the doctor-patient interaction and daily clinical routine. Methods: A qualitative study was conducted at the maternity department of a major German university hospital. The sample included 30 women with low- to medium-risk pregnancies. Half of the patients were seen during outpatient care and half were hospitalized for several days. The extent and frequency of Web- and mobile phone app usage were assessed. Semistructured interviews were conducted and analyzed using systematic thematic analysis. Results: Patients had a high demand for Web-based pregnancy applications. Study findings suggested a strong request for personalization, monitoring, and accessibility for frequent use as main themes derived from the interviews. Fostering patient empowerment in the doctor-patient relationship was also highly valued for a pregnancy app. Participants favored further integration of medical apps in their daily routine and pregnancy care. However, concerns were raised about content quality, trustworthiness of Web sources, and individual data security. Conclusions: eHealth and mHealth applications are a highly frequented source of information. Expectations and usability requirements for those applications are also high, thus posing a challenge to interdisciplinary service providers. Patients' attitude toward integrating apps in routine care settings was positive with a favorable influence on patient empowerment. Health care professionals should guide pregnant women toward a successful integration of these educational tools in pregnancy care. ", doi="10.2196/mhealth.7040", url="http://mhealth.jmir.org/2017/5/e73/", url="http://www.ncbi.nlm.nih.gov/pubmed/28550005" } @Article{info:doi/10.2196/jmir.4778, author="Garvin, A. Lynn and Simon, R. Steven", title="Prioritizing Measures of Digital Patient Engagement: A Delphi Expert Panel Study", journal="J Med Internet Res", year="2017", month="May", day="26", volume="19", number="5", pages="e182", keywords="patient reported outcome measures", keywords="patient engagement", keywords="patient-centered care", keywords="personal health record", keywords="health information technology", keywords="veterans health", abstract="Background: Establishing a validated scale of patient engagement through use of information technology (ie, digital patient engagement) is the first step to understanding its role in health and health care quality, outcomes, and efficient implementation by health care providers and systems. Objective: The aim of this study was to develop and prioritize measures of digital patient engagement based on patients' use of the US Department of Veterans Affairs (VA)'s MyHealtheVet (MHV) portal, focusing on the MHV/Blue Button and Secure Messaging functions. Methods: We aligned two models from the information systems and organizational behavior literatures to create a theory-based model of digital patient engagement. On the basis of this model, we conducted ten key informant interviews to identify potential measures from existing VA studies and consolidated the measures. We then conducted three rounds of modified Delphi rating by 12 national eHealth experts via Web-based surveys to prioritize the measures. Results: All 12 experts completed the study's three rounds of modified Delphi ratings, resulting in two sets of final candidate measures representing digital patient engagement for Secure Messaging (58 measures) and MHV/Blue Button (71 measures). These measure sets map to Donabedian's three types of quality measures: (1) antecedents (eg, patient demographics); (2) processes (eg, a novel measure of Web-based care quality); and (3) outcomes (eg, patient engagement). Conclusions: This national expert panel study using a modified Delphi technique prioritized candidate measures to assess digital patient engagement through patients' use of VA's My HealtheVet portal. The process yielded two robust measures sets prepared for future piloting and validation in surveys among Veterans. ", doi="10.2196/jmir.4778", url="http://www.jmir.org/2017/5/e182/", url="http://www.ncbi.nlm.nih.gov/pubmed/28550008" } @Article{info:doi/10.2196/jmir.7471, author="Lovatt, Melanie and Bath, A. Peter and Ellis, Julie", title="Development of Trust in an Online Breast Cancer Forum: A Qualitative Study", journal="J Med Internet Res", year="2017", month="May", day="23", volume="19", number="5", pages="e175", keywords="trust", keywords="online information sharing", keywords="breast cancer", keywords="online health communities", keywords="qualitative research", abstract="Background: Online health forums provide peer support for a range of medical conditions including life-threatening and terminal illnesses. Trust is an important component of peer-to-peer support, although relatively little is known about how trust forms within online health forums. Objective: The aim of this paper is to examine how trust develops and influences sharing among users of an online breast cancer forum. Methods: An interpretive qualitative approach was adopted. Data were collected from forum posts from 135 threads on 9 boards on the UK charity, Breast Cancer Care (BCC). Semistructured interviews were conducted with 14 BCC forum users. Both datasets were analyzed thematically using Braun and Clarke's approach and combined to triangulate analysis. Results: Trust operates in 3 dimensions, structural, relational, and temporal, and these intersect with each other and do not operate in isolation. The structural dimension relates to how the affordances and formal rules of the site affected trust. The relational dimension refers to how trust was necessarily experienced in interactions with other forum users: it emerged within relationships and was a social phenomenon. The temporal dimension relates to how trust changed over time and was influenced by the length of time users spent on the forum. Conclusions: Trust is a process that changes over time and which is influenced by structural features of the forum, as well as informal but collectively understood relational interactions among forum users. The study provides a better understanding of how the intersecting structural, relational, and temporal aspects that support the development of trust facilitate sharing in online environments. These findings will help organizations developing online health forums. ", doi="10.2196/jmir.7471", url="http://www.jmir.org/2017/5/e175/", url="http://www.ncbi.nlm.nih.gov/pubmed/28536093" } @Article{info:doi/10.2196/jopm.8844, author="Grossman, V. Lisa and Restaino, Susan and Vawdrey, David", title="Should Hospital Patients Have Bedside Access to Their Complete Medical Records?", journal="J Participat Med", year="2017", month="May", day="17", volume="9", number="1", pages="e11", keywords="Acute patient portals", keywords="patient portals", keywords="PHR, medical records", keywords="transparency", keywords="note-sharing", doi="10.2196/jopm.8844", url="http://jopm.jmir.org/2017/1/e11/", url="http://www.ncbi.nlm.nih.gov/pubmed/36262010" } @Article{info:doi/10.2196/jmir.7027, author="Coffey, T. Nathan and Cassese, James and Cai, Xinsheng and Garfinkel, Steven and Patel, Drasti and Jones, Rebecca and Shaewitz, Dahlia and Weinstein, A. Ali", title="Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation", journal="J Med Internet Res", year="2017", month="May", day="10", volume="19", number="5", pages="e159", keywords="traumatic brain injury", keywords="burns", keywords="spinal cord injuries", keywords="caregivers", keywords="health information, consumer", keywords="qualitative research", abstract="Background: In order to meet the challenges of caring for an injured person, caregivers need access to health information. However, caregivers often feel that they lack adequate information. Previous studies of caregivers have primarily focused on either their time and emotional burdens or their health outcomes, but the information needs of caregivers have not been thoroughly investigated. Objective: The purpose of this investigation was to identify the preferred sources of health information for caregivers supporting individuals with injuries and to explore how access to this information could be improved. Methods: A total of 32 caregivers participated in semistructured interviews, which were used in order to develop a more in-depth understanding of these caregivers' information needs. Digital audio recordings of the interviews were used for analysis purposes. These audio recordings were analyzed using a thematic analysis or qualitative content analysis. All of participant's interviews were then coded using the qualitative analysis program, Nvivo 10 for Mac (QSR International). Results: The caregivers endorsed similar behaviors and preferences when seeking and accessing health information. Medical professionals were the preferred source of information, while ease of access made the Internet the most common avenue to obtain information. The challenges faced by participants were frequently a result of limited support. In describing an ideal health system, participants expressed interest in a comprehensive care website offering support network resources, instructive services about the injury and caregiving, and injury-specific materials. Conclusions: According to the participants, an ideal health information system would include a comprehensive care website that offered supportive network resources, instructive services about the injury and caregiving, and materials specific to the type of patient injury. ", doi="10.2196/jmir.7027", url="http://www.jmir.org/2017/5/e159/", url="http://www.ncbi.nlm.nih.gov/pubmed/28490418" } @Article{info:doi/10.2196/resprot.6831, author="Slomian, Justine and Emonts, Patrick and Vigneron, Lara and Acconcia, Alessandro and Reginster, Jean-Yves and Oumourgh, Mina and Bruy{\`e}re, Olivier", title="Meeting the Needs of Mothers During the Postpartum Period: Using Co-Creation Workshops to Find Technological Solutions", journal="JMIR Res Protoc", year="2017", month="May", day="03", volume="6", number="5", pages="e76", keywords="mothers' needs", keywords="technological solutions", keywords="co-creating workshop", keywords="co-creation", keywords="postpartum needs", abstract="Background: The postnatal period is associated with many new needs for mothers. Objective: The aim of this study was to find technological solutions that meet the needs of mothers during the year following childbirth. Methods: Two co-creation workshops were undertaken with parents and professionals. The aim of the first workshop was to create a list of all the criteria the proposed solution would have to address to meet the needs of mothers after childbirth. The aim of the second workshop was to create solutions in response to the criteria selected during the first workshop. Results: Parents and health professionals want solutions that include empathy (ie, to help fight against the feelings of abnormality and loneliness), that help mothers in daily life, that are personalized and adapted to different situations, that are educational, and that assures some continuity in their contact with health professionals. In practice, we found that parents and professionals think the solution should be accessible to everyone and available at all times. To address these criteria, technology experts proposed different solutions, such as a forum dedicated to the postpartum period that is supervised by professionals, a centralized website, a system of videoconferencing, an online exchange group, a ``gift voucher'' system, a virtual reality app, or a companion robot. Conclusions: The human component seems to be very important during the postnatal period. Nevertheless, technology could be a great ally in helping mothers during the postpartum period. Technology can help reliably inform parents and may also give them the right tools to find supportive people. However, these technologies should be tested in clinical trials. ", doi="10.2196/resprot.6831", url="http://www.researchprotocols.org/2017/5/e76/", url="http://www.ncbi.nlm.nih.gov/pubmed/28468746" } @Article{ref1, url="" } @Article{info:doi/10.2196/jmir.6834, author="Wang, Xi and Zhao, Kang and Street, Nick", title="Analyzing and Predicting User Participations in Online Health Communities: A Social Support Perspective", journal="J Med Internet Res", year="2017", month="Apr", day="24", volume="19", number="4", pages="e130", keywords="social support", keywords="machine learning", keywords="community networks", keywords="patient engagement", keywords="prediction", abstract="Background: Online health communities (OHCs) have become a major source of social support for people with health problems. Members of OHCs interact online with similar peers to seek, receive, and provide different types of social support, such as informational support, emotional support, and companionship. As active participations in an OHC are beneficial to both the OHC and its users, it is important to understand factors related to users' participations and predict user churn for user retention efforts. Objective: This study aimed to analyze OHC users' Web-based interactions, reveal which types of social support activities are related to users' participation, and predict whether and when a user will churn from the OHC. Methods: We collected a large-scale dataset from a popular OHC for cancer survivors. We used text mining techniques to decide what kinds of social support each post contained. We illustrated how we built text classifiers for 5 different social support categories: seeking informational support (SIS), providing informational support (PIS), seeking emotional support (SES), providing emotional support (PES), and companionship (COM). We conducted survival analysis to identify types of social support related to users' continued participation. Using supervised machine learning methods, we developed a predictive model for user churn. Results: Users' behaviors to PIS, SES, and COM had hazard ratios significantly lower than 1 (0.948, 0.972, and 0.919, respectively) and were indicative of continued participations in the OHC. The churn prediction model based on social support activities offers accurate predictions on whether and when a user will leave the OHC. Conclusions: Detecting different types of social support activities via text mining contributes to better understanding and prediction of users' participations in an OHC. The outcome of this study can help the management and design of a sustainable OHC via more proactive and effective user retention strategies. ", doi="10.2196/jmir.6834", url="http://www.jmir.org/2017/4/e130/", url="http://www.ncbi.nlm.nih.gov/pubmed/28438725" } @Article{info:doi/10.2196/jmir.6673, author="Lauritsen, Lise and Andersen, Louise and Olsson, Emilia and S{\o}ndergaard, Rauff Stine and N{\o}rregaard, Benn Lasse and L{\o}ventoft, Kaare Philip and Svendsen, Dunker Signe and Fr{\o}kj{\ae}r, Erik and Jensen, M{\o}rch Hans and Hageman, Ida and Kessing, Vedel Lars and Martiny, Klaus", title="Usability, Acceptability, and Adherence to an Electronic Self-Monitoring System in Patients With Major Depression Discharged From Inpatient Wards", journal="J Med Internet Res", year="2017", month="Apr", day="21", volume="19", number="4", pages="e123", keywords="depressive disorder, major", keywords="electronic monitoring", keywords="graph drawing", keywords="sleep", keywords="self-assessment", keywords="observational study", keywords="inpatients", keywords="patient participation", keywords="chronotherapeutics", abstract="Background: Patients suffering from depression have a high risk of relapse and readmission in the weeks following discharge from inpatient wards. Electronic self-monitoring systems that offer patient-communication features are now available to offer daily support to patients, but the usability, acceptability, and adherence to these systems has only been sparsely investigated. Objective: We aim to test the usability, acceptability, adherence, and clinical outcome of a newly developed computer-based electronic self-assessment system (the Daybuilder system) in patients suffering from depression, in the period from discharge until commencing outpatient treatment in the Intensive Outpatient Unit for Affective Disorders. Methods: Patients suffering from unipolar major depression that were referred from inpatient wards to an intensive outpatient unit were included in this study before their discharge, and were followed for four weeks. User satisfaction was assessed using semiqualitative questionnaires and the System Usability Scale (SUS). Patients were interviewed at baseline and at endpoint with the Hamilton depression rating scale (HAM-D17), the Major Depression Inventory (MDI), and the 5-item World Health Organization Well-Being Index (WHO-5). In this four-week period patients used the Daybuilder system to self-monitor mood, sleep, activity, and medication adherence on a daily basis. The system displayed a graphical representation of the data that was simultaneously displayed to patients and clinicians. Patients were phoned weekly to discuss their data entries. The primary outcomes were usability, acceptability, and adherence to the system. The secondary outcomes were changes in: the electronically self-assessed mood, sleep, and activity scores; and scores from the HAM-D17, MDI, and WHO-5 scales. Results: In total, 76\% of enrolled patients (34/45) completed the four-week study. Five patients were readmitted due to relapse. The 34 patients that completed the study entered data for mood on 93.8\% of the days (872/930), sleep on 89.8\% of the days (835/930), activity on 85.6\% of the days (796/930), and medication on 88.0 \% of the days (818/930). SUS scores were 86.2 (standard deviation [SD] 9.7) and 79\% of the patients (27/34) found that the system lived up to their expectations. A significant improvement in depression severity was found on the HAM-D17 from 18.0 (SD 6.5) to 13.3 (SD 7.3; P<.01), on the MDI from 27.1 (SD 13.1) to 22.1 (SD 12.7; P=.006), and in quality of life on the WHO-5 from 31.3 (SD 22.9) to 43.4 (SD 22.1; P<.001) scales, but not on self-assessed mood (P=.08). Mood and sleep parameters were highly variable from day-to-day. Sleep-offset was significantly delayed from baseline, averaging 48 minutes (standard error 12 minutes; P<.001). Furthermore, when estimating delay of sleep-onset (with sleep quality included in the model) during the study period, this showed a significant negative effect on mood (P=.03) Conclusions: The Daybuilder systems performed well technically, and patients were satisfied with the system and had high adherence to self-assessments. The dropout rate and the gradual delay in sleep emphasize the need for continued clinical support for these patients, especially when considering sleep guidance. ", doi="10.2196/jmir.6673", url="http://www.jmir.org/2017/4/e123/", url="http://www.ncbi.nlm.nih.gov/pubmed/28432040" } @Article{info:doi/10.2196/jmir.7002, author="Petri{\v c}, Gregor and Atanasova, Sara and Kamin, Tanja", title="Impact of Social Processes in Online Health Communities on Patient Empowerment in Relationship With the Physician: Emergence of Functional and Dysfunctional Empowerment", journal="J Med Internet Res", year="2017", month="Mar", day="13", volume="19", number="3", pages="e74", keywords="physician-patient relations", keywords="patient empowerment", keywords="patient compliance", keywords="conflict", keywords="online health community", keywords="eHealth literacy", keywords="cross-sectional survey", abstract="Background: Substantial research demonstrates the importance of online health communities (OHCs) for patient empowerment, although the impact on the patient-physician relationship is understudied. Patient empowerment also occurs in relationship with the physician, but studies of OHCs mostly disregard this. The question also remains about the nature and consequences of this empowerment, as it might be based on the limited validity of some information in OHCs. Objective: The main purpose of this study was to examine the impact of social processes in OHCs (information exchange with users and health professional moderators, social support, finding meaning, and self-expressing) on functional and dysfunctional patient empowerment in relationship with the physician (PERP). This impact was investigated by taking into account moderating role of eHealth literacy and physician's paternalism. Method: An email list--based Web survey on a simple random sample of 25,000 registered users of the most popular general OHC in Slovenia was conducted. A total of 1572 respondents completed the survey. The analyses were conducted on a subsample of 591 regular users, who had visited a physician at least once in the past 2 years. To estimate the impact of social processes in OHC on functional and dysfunctional PERP, we performed a series of hierarchical regression analyses. To determine the moderating role of eHealth literacy and the perceived physician characteristics, interactions were included in the regression analyses. Results: The mean age of the respondents in the sample was 37.6 years (SD 10.3) and 83.3\% were females. Factor analyses of the PERP revealed a five-factor structure with acceptable fit (root-mean-square error of approximation =.06). Most important results are that functional self-efficacy is positively predicted by information exchange with health professional moderators (beta=.12, P=.02), information exchange with users (beta=.12, P=.05), and giving social support (beta=.13, P=.02), but negatively predicted with receiving social support (beta=?.21, P<.001). Functional control is also predicted by information exchange with health professional moderators (beta=.16, P=.005). Dysfunctional control and competence are inhibited by information exchanges with health professionals (beta=?.12, P=.03), whereas dysfunctional self-efficacy is inhibited by self-expressing (beta=?.12, P=.05). The process of finding meaning likely leads to the development of dysfunctional competences and control if the physician is perceived to be paternalistic (beta=.14, P=.03). Under the condition of high eHealth literacy, the process of finding meaning will inhibit the development of dysfunctional competences and control (beta=?.17, P=.01). Conclusions: Social processes in OHCs do not have a uniform impact on PERP. This impact is moderated by eHealth literacy and physician paternalism. Exchanging information with health professional moderators in OHCs is the most important factor for stimulating functional PERP as well as diminishing dysfunctional PERP. Social support in OHCs plays an ambiguous role, often making patients behave in a strategic, uncooperative way toward physicians. ", doi="10.2196/jmir.7002", url="http://www.jmir.org/2017/3/e74/", url="http://www.ncbi.nlm.nih.gov/pubmed/28288953" } @Article{info:doi/10.2196/jmir.5729, author="Tan, Swee-Lin Sharon and Goonawardene, Nadee", title="Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review", journal="J Med Internet Res", year="2017", month="Jan", day="19", volume="19", number="1", pages="e9", keywords="Internet", keywords="information seeking", keywords="physician-patient relations", keywords="health information", abstract="Background: With online health information becoming increasingly popular among patients, concerns have been raised about the impact of patients' Internet health information-seeking behavior on their relationship with physicians. Therefore, it is pertinent to understand the influence of online health information on the patient-physician relationship. Objective: Our objective was to systematically review existing research on patients' Internet health information seeking and its influence on the patient-physician relationship. Methods: We systematically searched PubMed and key medical informatics, information systems, and communication science journals covering the period of 2000 to 2015. Empirical articles that were in English were included. We analyzed the content covering themes in 2 broad categories: factors affecting patients' discussion of online findings during consultations and implications for the patient-physician relationship. Results: We identified 18 articles that met the inclusion criteria and the quality requirement for the review. The articles revealed barriers, facilitators, and demographic factors that influence patients' disclosure of online health information during consultations and the different mechanisms patients use to reveal these findings. Our review also showed the mechanisms in which online information could influence patients' relationship with their physicians. Conclusions: Results of this review contribute to the understanding of the patient-physician relationship of Internet-informed patients. Our main findings show that Internet health information seeking can improve the patient-physician relationship depending on whether the patient discusses the information with the physician and on their prior relationship. As patients have better access to health information through the Internet and expect to be more engaged in health decision making, traditional models of the patient-provider relationship and communication strategies must be revisited to adapt to this changing demographic. ", doi="10.2196/jmir.5729", url="http://www.jmir.org/2017/1/e9/", url="http://www.ncbi.nlm.nih.gov/pubmed/28104579" } @Article{info:doi/10.2196/jmir.5970, author="Nordin, Catharina and Michaelson, Peter and Eriksson, K. Margareta and Gard, Gunvor", title="It's About Me: Patients' Experiences of Patient Participation in the Web Behavior Change Program for Activity in Combination With Multimodal Pain Rehabilitation", journal="J Med Internet Res", year="2017", month="Jan", day="18", volume="19", number="1", pages="e22", keywords="interview", keywords="pain", keywords="patient participation", keywords="qualitative research", keywords="Web-based intervention", abstract="Background: Patients' participation in their health care is recognized as a key component in high-quality health care. Persons with persistent pain are recommended treatments with a cognitive approach from a biopsychosocial explanation of pain, in which a patient's active participation in their rehabilitation is in focus. Web-based interventions for pain management have the potential to increase patient participation by enabling persons to play a more active role in rehabilitation. However, little is known about patients' experiences of patient participation in Web-based interventions in clinical practice. Objective: The objective of our study was to explore patients' experiences of patient participation in a Web Behavior Change Program for Activity (Web-BCPA) in combination with multimodal rehabilitation (MMR) among patients with persistent pain in primary health care. Methods: Qualitative interviews were conducted with 15 women and 4 men, with a mean age of 45 years. Data were analyzed with qualitative content analysis. Results: One theme, ``It's about me,'' and 4 categories, ``Take part in a flexible framework of own priority,'' ``Acquire knowledge and insights,'' ``Ways toward change,'' and ``Personal and environmental conditions influencing participation,'' were developed. Patient participation was depicted as being confirmed in an individualized and structured rehabilitation framework of one's own choice. Being confirmed was fundamental to patient participation in the interaction with the Web-BCPA and with the health care professionals in MMR. To acquire knowledge and insights about pain and their life situation, through self-reflection in the solitary work in the Web-BCPA and through feedback from the health care professionals in MMR, was experienced as patient participation by the participants. Patient participation was described as structured ways to reach their goals of behavior change, which included analyzing resources and restrictions, problem solving, and evaluation. The individual's emotional and cognitive resources and restrictions, as well as health care professionals and significant others' attitudes and behavior influenced patient participation in the rehabilitation. To some extent there were experiences of restrained patient participation through the great content of the Web-BCPA. Conclusions: Patient participation was satisfactory in the Web-BCPA in combination with MMR. The combined treatment was experienced to increase patient participation in the rehabilitation. Being confirmed through self-identification and finding the content of the Web-BCPA trustworthy was emphasized. Patient participation was experienced as a learning process leading to new knowledge and insights. Higher user control regarding the timing of the Web-BCPA and therapist guidance of the content may further increase patient participation in the combined treatment. ", doi="10.2196/jmir.5970", url="http://www.jmir.org/2017/1/e22/", url="http://www.ncbi.nlm.nih.gov/pubmed/28100440" } @Article{info:doi/10.2196/jmir.6555, author="Smith, A. Maureen and Bednarz, Lauren and Nordby, A. Peter and Fink, Jennifer and Greenlee, T. Robert and Bolt, Daniel and Magnan, M. Elizabeth", title="Increasing Consumer Engagement by Tailoring a Public Reporting Website on the Quality of Diabetes Care: A Qualitative Study", journal="J Med Internet Res", year="2016", month="Dec", day="21", volume="18", number="12", pages="e332", keywords="diabetes", keywords="chronic conditions", keywords="public reports", keywords="patient engagement", abstract="Background: The majority of health care utilization decisions in the United States are made by persons with multiple chronic conditions. Existing public reports of health system quality do not distinguish care for these persons and are often not used by the consumers they aim to reach. Objective: Our goal was to determine if tailoring quality reports to persons with diabetes mellitus and co-occurring chronic conditions would increase user engagement with a website that publicly reports the quality of diabetes care. Methods: We adapted an existing consumer-focused public reporting website using adult learning theory to display diabetes quality reports tailored to the user's chronic condition profile. We conducted in-depth cognitive interviews with 20 individuals who either had diabetes and/or cared for someone with diabetes to assess the website. Interviews were audiotaped and transcribed, then analyzed using thematic content analysis. Results: Three themes emerged that suggested increased engagement from tailoring the site to a user's chronic conditions: ability to interact, relevance, and feeling empowered to act. Conclusions: We conclude that tailoring can be used to improve public reporting sites for individuals with chronic conditions, ultimately allowing consumers to make more informed health care decisions. ", doi="10.2196/jmir.6555", url="http://www.jmir.org/2016/12/e332/", url="http://www.ncbi.nlm.nih.gov/pubmed/28003173" } @Article{info:doi/10.2196/jmir.6484, author="Lorig, Kate and Ritter, L. Philip and Turner, M. Ralph and English, Kathleen and Laurent, D. Diana and Greenberg, Jay", title="A Diabetes Self-Management Program: 12-Month Outcome Sustainability From a Nonreinforced Pragmatic Trial", journal="J Med Internet Res", year="2016", month="Dec", day="15", volume="18", number="12", pages="e322", keywords="patient education", keywords="self-management", keywords="type 2 diabetes", abstract="Background: Diabetes self-management education has been shown to be effective in controlled trials. The 6-week Better Choices, Better Health-Diabetes (BCBH-D) self-management program was also associated with an improvement in health outcomes in a 6-month translation study. Objective: The objective of this study was to determine whether a national translation of the BCBH-D self-management program, offered both Web-based and face-to-face, was associated with improvements in health outcomes (including HbA1c) and health behaviors (including recommended medical tests) 1 year after intervention Methods: Web-based programs were administered nationally, whereas face-to-face workshops took place in Atlanta, Indianapolis, and St Louis. Self-report questionnaires were either Web-based or administered by mail, at baseline and 1 year, and collected health and health-behavior measures. HbA1c blood samples were collected via mailed kits. A previous 6-month study found statistically significant improvements in 13 of 14 outcome measures, including HbA1c. For this study, paired t test compared baseline with 1-year outcomes. Subgroup analyses determined whether participants with specific conditions improved (high HbA1c, depression, hypoglycemia, nonadherence to medication, no aerobic exercise). The percentage of participants with improvements in effect size of at least 0.4 in at least 1 of the 5 measures was calculated. Results: A total of 857 participants with 1-year data (69.7\% of baseline participants) demonstrated statistically significant 1-year improvements in 13 of 15 outcome measures; 79.9\% (685/857) of participants showed improvements in effect size of 0.4 or greater in at least 1 of the 5 criterial measures. Conclusions: Participants had small but significant benefits in multiple measures. Improvements previously noted at 6 months were maintained or amplified at 1 year. ", doi="10.2196/jmir.6484", url="http://www.jmir.org/2016/12/e322/", url="http://www.ncbi.nlm.nih.gov/pubmed/27979790" } @Article{info:doi/10.2196/jmir.5498, author="Hsieh, Wenhan Ronan and Chen, Likwang and Chen, Tsung-Fu and Liang, Jyh-Chong and Lin, Tzu-Bin and Chen, Yen-Yuan and Tsai, Chin-Chung", title="The Association Between Internet Use and Ambulatory Care-Seeking Behaviors in Taiwan: A Cross-Sectional Study", journal="J Med Internet Res", year="2016", month="Dec", day="07", volume="18", number="12", pages="e319", keywords="mass media", keywords="Internet", keywords="literacy", keywords="outpatient clinic", keywords="ambulatory care", abstract="Background: Compared with the traditional ways of gaining health-related information from newspapers, magazines, radio, and television, the Internet is inexpensive, accessible, and conveys diverse opinions. Several studies on how increasing Internet use affected outpatient clinic visits were inconclusive. Objective: The objective of this study was to examine the role of Internet use on ambulatory care-seeking behaviors as indicated by the number of outpatient clinic visits after adjusting for confounding variables. Methods: We conducted this study using a sample randomly selected from the general population in Taiwan. To handle the missing data, we built a multivariate logistic regression model for propensity score matching using age and sex as the independent variables. The questionnaires with no missing data were then included in a multivariate linear regression model for examining the association between Internet use and outpatient clinic visits. Results: We included a sample of 293 participants who answered the questionnaire with no missing data in the multivariate linear regression model. We found that Internet use was significantly associated with more outpatient clinic visits (P=.04). The participants with chronic diseases tended to make more outpatient clinic visits (P<.01). Conclusions: The inconsistent quality of health-related information obtained from the Internet may be associated with patients' increasing need for interpreting and discussing the information with health care professionals, thus resulting in an increasing number of outpatient clinic visits. In addition, the media literacy of Web-based health-related information seekers may also affect their ambulatory care-seeking behaviors, such as outpatient clinic visits. ", doi="10.2196/jmir.5498", url="http://www.jmir.org/2016/12/e319/", url="http://www.ncbi.nlm.nih.gov/pubmed/27927606" } @Article{info:doi/10.2196/jmir.4436, author="Zwijnenberg, C. Nicolien and Hendriks, Michelle and Bloemendal, Evelien and Damman, C. Olga and de Jong, D. Judith and Delnoij, MJ Diana and Rademakers, JD Jany", title="Patients' Need for Tailored Comparative Health Care Information: A Qualitative Study on Choosing a Hospital", journal="J Med Internet Res", year="2016", month="Nov", day="28", volume="18", number="11", pages="e297", keywords="patients", keywords="decision making", keywords="choice behavior", keywords="qualitative research", keywords="quality of health care", keywords="hospitals", abstract="Background: The Internet is increasingly being used to provide patients with information about the quality of care of different health care providers. Although online comparative health care information is widely available internationally, and patients have been shown to be interested in this information, its effect on patients' decision making is still limited. Objective: This study aimed to explore patients' preferences regarding information presentation and their values concerning tailored comparative health care information. Meeting patients' information presentation needs might increase the perceived relevance and use of the information. Methods: A total of 38 people participated in 4 focus groups. Comparative health care information about hip and knee replacement surgery was used as a case example. One part of the interview focused on patients' information presentation preferences, whereas the other part focused on patients' values of tailored information (ie, showing reviews of patients with comparable demographics). The qualitative data were transcribed verbatim and analyzed using the constant comparative method. Results: The following themes were deduced from the transcripts: number of health care providers to be presented, order in which providers are presented, relevancy of tailoring patient reviews, and concerns about tailoring. Participants' preferences differed concerning how many and in which order health care providers must be presented. Most participants had no interest in patient reviews that were shown for specific subgroups based on age, gender, or ethnicity. Concerns of tailoring were related to the representativeness of results and the complexity of information. A need for information about the medical specialist when choosing a hospital was stressed by several participants. Conclusions: The preferences for how comparative health care information should be presented differ between people. ``Information on demand'' and information about the medical specialist might be promising ways to increase the relevancy and use of online comparative health care information. Future research should focus on how different groups of people use comparative health care information for different health care choices in real life. ", doi="10.2196/jmir.4436", url="http://www.jmir.org/2016/11/e297/", url="http://www.ncbi.nlm.nih.gov/pubmed/27895006" } @Article{info:doi/10.2196/jmir.6371, author="Kim, Young Ju and Wineinger, E. Nathan and Taitel, Michael and Radin, M. Jennifer and Akinbosoye, Osayi and Jiang, Jenny and Nikzad, Nima and Orr, Gregory and Topol, Eric and Steinhubl, Steve", title="Self-Monitoring Utilization Patterns Among Individuals in an Incentivized Program for Healthy Behaviors", journal="J Med Internet Res", year="2016", month="Nov", day="17", volume="18", number="11", pages="e292", keywords="health behavior", keywords="mobile health", keywords="mobile apps", keywords="reward", keywords="self blood pressure monitoring", keywords="blood glucose self-monitoring", abstract="Background: The advent of digital technology has enabled individuals to track meaningful biometric data about themselves. This novel capability has spurred nontraditional health care organizations to develop systems that aid users in managing their health. One of the most prolific systems is Walgreens Balance Rewards for healthy choices (BRhc) program, an incentivized, Web-based self-monitoring program. Objective: This study was performed to evaluate health data self-tracking characteristics of individuals enrolled in the Walgreens' BRhc program, including the impact of manual versus automatic data entries through a supported device or apps. Methods: We obtained activity tracking data from a total of 455,341 BRhc users during 2014. Upon identifying users with sufficient follow-up data, we explored temporal trends in user participation. Results: Thirty-four percent of users quit participating after a single entry of an activity. Among users who tracked at least two activities on different dates, the median length of participating was 8 weeks, with an average of 5.8 activities entered per week. Furthermore, users who participated for at least twenty weeks (28.3\% of users; 33,078/116,621) consistently entered 8 to 9 activities per week. The majority of users (77\%; 243,774/315,744) recorded activities through manual data entry alone. However, individuals who entered activities automatically through supported devices or apps participated roughly four times longer than their manual activity-entering counterparts (average 20 and 5 weeks, respectively; P<.001). Conclusions: This study provides insights into the utilization patterns of individuals participating in an incentivized, Web-based self-monitoring program. Our results suggest automated health tracking could significantly improve long-term health engagement. ", doi="10.2196/jmir.6371", url="http://www.jmir.org/2016/11/e292/", url="http://www.ncbi.nlm.nih.gov/pubmed/27856407" } @Article{info:doi/10.2196/jmir.5994, author="Russell, J. Dianne and Sprung, Jennifer and McCauley, Dayle and Kraus de Camargo, Olaf and Buchanan, Francine and Gulko, Roman and Martens, Rachel and Gorter, Willem Jan", title="Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability", journal="J Med Internet Res", year="2016", month="Nov", day="11", volume="18", number="11", pages="e293", keywords="knowledge exchange", keywords="research engagement", keywords="collaborative research", keywords="scientific collaboration", keywords="Web-based community", keywords="social media", keywords="Facebook", keywords="childhood disability", keywords="patient and public involvement(PPI)", abstract="Background: Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. Objective: Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. Methods: The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. Results: The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9\%) by moderators, 197 (45.6\%) by parents, and 80 (18.5\%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64\% (277/432) of posts. The survey had a 51\% response rate (49/96 members), with 40 (82\%) being parent members and 9 (18\%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76\% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58\% (23/40) of parents and 56\% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. Conclusions: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most. ", doi="10.2196/jmir.5994", url="http://www.jmir.org/2016/11/e293/", url="http://www.ncbi.nlm.nih.gov/pubmed/27836818" } @Article{info:doi/10.2196/jmir.5667, author="Patmon, L. Frances and Gee, M. Perry and Rylee, L. Tina and Readdy, L. Noriann", title="Using Interactive Patient Engagement Technology in Clinical Practice: A Qualitative Assessment of Nurses' Perceptions", journal="J Med Internet Res", year="2016", month="Nov", day="11", volume="18", number="11", pages="e298", keywords="patient engagement", keywords="health information technology", keywords="educational technology", keywords="patient education", keywords="patient experience", keywords="primary care nursing", keywords="qualitative research", abstract="Background: Research has shown patients who are more engaged in their care are likely to have better health outcomes and reduced health care costs. Health care organizations are now focusing their efforts in finding ways to improve patient engagement. At the forefront of this movement are patient engagement technology systems. In this paper, these emerging systems are described as interactive patient engagement technologies (iPET). Objective: The objective of this descriptive study was to gain an understanding of the perceptions of nurses who are integrating these iPET systems into their daily clinical practice. Methods: The research team interviewed 38 nurses from 2 California-based hospitals using a focused rapid ethnographic evaluation methodology to gather data. Results: The study participants reported that using iPET systems may enhance clinical nursing practice. The 4 key findings of iPET were that it (1) is effective for distraction therapy, (2) has functionality that affects both patients and nurses, (3) has implications for clinical practice, and (4) may require additional training to improve usage. Conclusions: With sufficient training on the iPET system, nurses believed they could use these technologies as an enhancement to their clinical practice. Additionally, nurses perceived these systems served as distraction therapy for patients. Initial findings suggest that iPET is beneficial, but more research is required to examine the usefulness of iPET systems in the inpatient settings. ", doi="10.2196/jmir.5667", url="http://www.jmir.org/2016/11/e298/", url="http://www.ncbi.nlm.nih.gov/pubmed/27836817" } @Article{info:doi/10.2196/jmir.6297, author="Park, Albert and Hartzler, L. Andrea and Huh, Jina and Hsieh, Gary and McDonald, W. David and Pratt, Wanda", title="``How Did We Get Here?'': Topic Drift in Online Health Discussions", journal="J Med Internet Res", year="2016", month="Nov", day="02", volume="18", number="11", pages="e284", keywords="consumer health", keywords="health informatics", keywords="health care information systems", keywords="similarity measures", keywords="Internet communications tools", keywords="Web-based interaction", keywords="collaborative and social computing systems and tools", abstract="Background: Patients increasingly use online health communities to exchange health information and peer support. During the progression of health discussions, a change of topic---topic drift---can occur. Topic drift is a frequent phenomenon linked to incoherence and frustration in online communities and other forms of computer-mediated communication. For sensitive topics, such as health, such drift could have life-altering repercussions, yet topic drift has not been studied in these contexts. Objective: Our goals were to understand topic drift in online health communities and then to develop and evaluate an automated approach to detect both topic drift and efforts of community members to counteract such drift. Methods: We manually analyzed 721 posts from 184 threads from 7 online health communities within WebMD to understand topic drift, members' reaction towards topic drift, and their efforts to counteract topic drift. Then, we developed an automated approach to detect topic drift and counteraction efforts. We detected topic drift by calculating cosine similarity between 229,156 posts from 37,805 threads and measuring change of cosine similarity scores from the threads' first posts to their sequential posts. Using a similar approach, we detected counteractions to topic drift in threads by focusing on the irregular increase of similarity scores compared to the previous post in threads. Finally, we evaluated the performance of our automated approaches to detect topic drift and counteracting efforts by using a manually developed gold standard. Results: Our qualitative analyses revealed that in threads of online health communities, topics change gradually, but usually stay within the global frame of topics for the specific community. Members showed frustration when topic drift occurred in the middle of threads but reacted positively to off-topic stories shared as separate threads. Although all types of members helped to counteract topic drift, original posters provided the most effort to keep threads on topic. Cosine similarity scores show promise for automatically detecting topical changes in online health discussions. In our manual evaluation, we achieved an F1 score of .71 and .73 for detecting topic drift and counteracting efforts to stay on topic, respectively. Conclusions: Our analyses expand our understanding of topic drift in a health context and highlight practical implications, such as promoting off-topic discussions as a function of building rapport in online health communities. Furthermore, the quantitative findings suggest that an automated tool could help detect topic drift, support counteraction efforts to bring the conversation back on topic, and improve communication in these important communities. Findings from this study have the potential to reduce topic drift and improve online health community members' experience of computer-mediated communication. Improved communication could enhance the personal health management of members who seek essential information and support during times of difficulty. ", doi="10.2196/jmir.6297", url="http://www.jmir.org/2016/11/e284/", url="http://www.ncbi.nlm.nih.gov/pubmed/27806924" } @Article{info:doi/10.2196/jmir.5309, author="Chen, T. Annie", title="The Relationship Between Health Management and Information Behavior Over Time: A Study of the Illness Journeys of People Living With Fibromyalgia", journal="J Med Internet Res", year="2016", month="Oct", day="25", volume="18", number="10", pages="e269", keywords="health knowledge, attitudes, practice", keywords="information seeking behavior", keywords="information use", keywords="consumer health information", keywords="chronic disease", keywords="fibromyalgia", abstract="Background: Over the course of a chronic illness, patients face many challenges, including understanding what is happening to them and developing an effective strategy for managing illness. While there is existing literature concerning how people seek health-related information and cope with chronic illnesses, there is a need for additional research on how information affects patients' understandings of their illness, and how changes in this understanding affect their health management strategies over time. Objective: This study examined how health management, information seeking, and information consumption and use processes are related throughout an illness. Methods: A diversified recruitment strategy involving multiple media channels was used to recruit participants for an interview study. During the interviews, participants were asked to draw an ``illness journey'' timeline. The data were analyzed using a qualitative approach drawn from Interpretative Phenomenological Analysis and Grounded Theory. Results: The study identified four main health management features of illness journeys: onset, progression toward diagnosis, acceptance, and development of an effective management strategy. The study then focused on how information seeking changes over illness journeys, particularly in terms of a transition from active information seeking to monitoring with intermittent focused searching. Last, the paper describes the information consumption and use processes that patients engaged in throughout their journey. Conclusions: This study makes three important contributions to the field. First, it presents an integrated conceptualization of how health management and information behaviors are related on illness journeys. Second, it adds to our existing knowledge on health literacy and self-management of chronic illness. Third, the study has implications for health interface design. ", doi="10.2196/jmir.5309", url="http://www.jmir.org/2016/10/e269/", url="http://www.ncbi.nlm.nih.gov/pubmed/27780794" } @Article{info:doi/10.2196/jmir.6499, author="Haun, N. Jolie and Chavez, Margeaux and Nazi, M. Kim and Antinori, Nicole", title="Developing a Health Information Technology Systems Matrix: A Qualitative Participatory Approach", journal="J Med Internet Res", year="2016", month="Oct", day="06", volume="18", number="10", pages="e266", keywords="veterans", keywords="patient-centered care", keywords="information resources", keywords="patient preferences", keywords="integrated delivery system", keywords="health information technology", abstract="Background: The US Department of Veterans Affairs (VA) has developed various health information technology (HIT) resources to provide accessible veteran-centered health care. Currently, the VA is undergoing a major reorganization of VA HIT to develop a fully integrated system to meet consumer needs. Although extensive system documentation exists for various VA HIT systems, a more centralized and integrated perspective with clear documentation is needed in order to support effective analysis, strategy, planning, and use. Such a tool would enable a novel view of what is currently available and support identifying and effectively capturing the consumer's vision for the future. Objective: The objective of this study was to develop the VA HIT Systems Matrix, a novel tool designed to describe the existing VA HIT system and identify consumers' vision for the future of an integrated VA HIT system. Methods: This study utilized an expert panel and veteran informant focus groups with self-administered surveys. The study employed participatory research methods to define the current system and understand how stakeholders and veterans envision the future of VA HIT and interface design (eg, look, feel, and function). Directed content analysis was used to analyze focus group data. Results: The HIT Systems Matrix was developed with input from 47 veterans, an informal caregiver, and an expert panel to provide a descriptive inventory of existing and emerging VA HIT in four worksheets: (1) access and function, (2) benefits and barriers, (3) system preferences, and (4) tasks. Within each worksheet is a two-axis inventory. The VA's existing and emerging HIT platforms (eg, My HealtheVet, Mobile Health, VetLink Kiosks, Telehealth), My HealtheVet features (eg, Blue Button, secure messaging, appointment reminders, prescription refill, vet library, spotlight, vitals tracker), and non-VA platforms (eg, phone/mobile phone, texting, non-VA mobile apps, non-VA mobile electronic devices, non-VA websites) are organized by row. Columns are titled with thematic and functional domains (eg, access, function, benefits, barriers, authentication, delegation, user tasks). Cells for each sheet include descriptions and details that reflect factors relevant to domains and the topic of each worksheet. Conclusions: This study provides documentation of the current VA HIT system and efforts for consumers' vision of an integrated system redesign. The HIT Systems Matrix provides a consumer preference blueprint to inform the current VA HIT system and the vision for future development to integrate electronic resources within VA and beyond with non-VA resources. The data presented in the HIT Systems Matrix are relevant for VA administrators and developers as well as other large health care organizations seeking to document and organize their consumer-facing HIT resources. ", doi="10.2196/jmir.6499", url="http://www.jmir.org/2016/10/e266/", url="http://www.ncbi.nlm.nih.gov/pubmed/27713112" } @Article{info:doi/10.2196/cancer.5711, author="Drewes, Caroline and Kirkovits, Thomas and Schiltz, Daniel and Schinkoethe, Timo and Haidinger, Renate and Goldmann-Posch, Ursula and Harbeck, Nadia and Wuerstlein, Rachel", title="EHealth Acceptance and New Media Preferences for Therapy Assistance Among Breast Cancer Patients", journal="JMIR Cancer", year="2016", month="Sep", day="14", volume="2", number="2", pages="e13", keywords="eHealth", keywords="mHealth", keywords="breast cancer", keywords="adherence", keywords="compliance", keywords="new media", keywords="therapy improvement", abstract="Background: Electronic health (eHealth) and mobile communication-based health care (mHealth) applications have been increasingly utilized in medicine over the last decade, and have facilitated improved adherence to therapy regimens in patients with chronic conditions. Due to the long duration of breast cancer therapy, and the long course of disease in metastatic breast cancer, a need for more intensified physician-patient communication has emerged. Various support mechanisms, including new media such as mHealth and eHealth, have been proposed for this purpose. Objective: The aim of this study was to analyze the correlation between sociodemographic factors, as well as health status of breast cancer patients, and their current utilization of new media, or their willingness to use Internet and mobile phone apps for improvement of therapy management. Methods: The survey for this study was conducted anonymously during the 2012 Mamazone Projekt Diplompatient meeting (Augsburg, Germany), which hosted approximately 375 participants per day. A total of 168 questionnaires were completed. The questionnaire aimed to assess sociodemographic status, disease patterns, and current use of new media (ie, Internet, mobile phone, and mobile phone apps) in breast cancer patients. Habits and frequency of use for these new technologies, as well as patients' affinity towards eHealth and mHealth tools for therapy management improvement, were investigated. Results: Almost all participants used the Internet (95.8\%, 161/168), with 91.5\% (151/165) also utilizing this technology for health-related issues. Approximately 23\% (38/168) of respondents owned a mobile phone. When asked about their preferences for therapy assistance, 67.3\% (113/168) of respondents were interested in assistance via the Internet, 25.0\% (42/168) via mobile phone, and 73.2\% (123/168) via call center. Patients diagnosed with breast cancer <5 years before the survey were significantly more interested in a call center than patients diagnosed >5 years before survey participation. Conclusions: The vast majority of breast cancer patients accept the Internet for therapy assistance, which indicates that eHealth is a promising medium to improve patient-physician communication. Such technologies may improve individual disease management and ultimately lead to an enhanced adherence to therapy regimens. ", doi="10.2196/cancer.5711", url="http://cancer.jmir.org/2016/2/e13/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410189" } @Article{info:doi/10.2196/cancer.5367, author="Ruckenstuhl, Paul and Schippinger, Michael and Liebmann, Paul and Leithner, Andreas and Bernhardt, Gerwin", title="Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment", journal="JMIR Cancer", year="2016", month="Aug", day="25", volume="2", number="2", pages="e11", keywords="social media", keywords="Facebook", keywords="Ewing sarcoma", keywords="social media networking", abstract="Background: An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment. Objective: The aim of this study was to analyze and compare Ewing sarcoma patients' and relatives' behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment. Methods: We examined a Facebook group named ``Ewing Sarcoma Awareness'' that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients' and relatives' answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study. Results: More than 70\% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89\% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20\% (13/65) of all participants reported that the group affected their choice of treatment and 15\% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (P=.003) were found comparing patients' and relatives' results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis. Conclusions: The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients' care requires further evaluation. ", doi="10.2196/cancer.5367", url="http://cancer.jmir.org/2016/2/e11/", url="http://www.ncbi.nlm.nih.gov/pubmed/28410188" } @Article{info:doi/10.2196/jmir.5799, author="Huerta, R. Timothy and Walker, M. Daniel and Ford, W. Eric", title="An Evaluation and Ranking of Children's Hospital Websites in the United States", journal="J Med Internet Res", year="2016", month="Aug", day="22", volume="18", number="8", pages="e228", keywords="pediatric hospital", keywords="Internet", keywords="social media", keywords="patient participation", keywords="patient education", abstract="Background: Children's hospitals are faced with the rising need for technological innovation. Their prospective health care consumers, who increasingly depend on the Web and social media for communication and consumer engagement, drive this need. As patients and family members navigate the Web presence of hospitals, it is important for these specialized organizations to present themselves and their services efficiently. Objective: The purpose of this study was to evaluate the website content of children's hospitals in order to identify opportunities to improve website design and create benchmarks to judge improvement. Methods: All websites associated with a children's hospital were identified using a census list of all children's hospitals in the United States. In March of 2014, each website and its social media were evaluated using a Web crawler that provided a 5-dimensional assessment that included website accessibility, marketing, content, technology, and usability. The 5-dimensional assessment was scored on a scale ranging from 0 to 10 with positive findings rated higher on the scale. Websites were ranked by individual dimensions as well as according to their average ranking across all dimensions. Results: Mean scores of 153 websites ranged from 5.05 to 8.23 across all 5 dimensions. Results revealed that no website scored a perfect 10 on any dimension and that room exists for meaningful improvement. Conclusions: Study findings allow for the establishment of baseline benchmarks for tracking future website and social media improvements and display the need for enhanced Web-based consumer engagement for children's hospitals. ", doi="10.2196/jmir.5799", url="http://www.jmir.org/2016/8/e228/", url="http://www.ncbi.nlm.nih.gov/pubmed/27549074" } @Article{info:doi/10.2196/jmir.5877, author="van Bruinessen, Renske Inge and van Weel-Baumgarten, M. Evelyn and Gouw, Hans and Zijlstra, M. Jos{\'e}e and van Dulmen, Sandra", title="An Integrated Process and Outcome Evaluation of a Web-Based Communication Tool for Patients With Malignant Lymphoma: Randomized Controlled Trial", journal="J Med Internet Res", year="2016", month="Jul", day="29", volume="18", number="7", pages="e206", keywords="RCT", keywords="communication aid", keywords="Web-based intervention", keywords="self-help application", keywords="hematologic malignancies", keywords="lymphoma cancer", keywords="patient participation", abstract="Background: The complex nature of the medical dialogue and the often emotional context in cancer care present challenges to health care professionals (HCPs) and patients. Patients are increasingly expected to be informed participants and to be able to make conscious decisions, which they often find very difficult. In an attempt to support patients with malignant lymphoma in clinical communication, we developed a stand-alone, Web-based intervention called ``PatientTIME.'' The development of PatientTIME was based on a participatory intervention mapping framework. Its primary aim is to boost patients' self-efficacy in patient-professional communication (ie, their confidence when interacting with their HCP). Patients can use this intervention before their hospital visit to prepare for their clinical consultation. PatientTIME is fully automated and use is patient-initiated. Objective: The aim of this study was to evaluate if and in what way patients benefit from PatientTIME and if it enhances their confidence in clinical communication. Methods: The intervention was evaluated in a closed randomized controlled trial with continuous recruitment (using online and offline methods to reach potential participants) and data collection. In accordance with the Medical Research Council guidance, we started with a process evaluation. Subsequently, an outcome evaluation was performed focusing on the patients' perceived confidence in communication with their HCP, measured with the validated PEPPI questionnaire at baseline and at 3 months after participation. Process and outcome data were obtained through Web-based questionnaires, log files (automatically generated files mapping the interactions between program and users), and a logbook (comprising a record of actions and interactions kept by the researchers). Participants were not blinded. A total of 146 patients registered online, of whom 97 gave their informed consent and were assigned at random to the control group (N=34) or 1 of the 2 intervention groups (N=63). Ultimately 87/97 (90\%) of these patients actually participated in the study, producing 87 datasets for analysis. Results: More than half of the intervention group patients reported that the intervention helped them prepare for a clinical consultation; it created awareness about the importance of communication and reinforced their existing communication skills. In the postvisit test, the control group showed a small, nonsignificant improvement in perceived communication efficacy. The intervention group showed a significant improvement in perceived efficacy. However, the interaction effect was not significant, indicating that the improvement solely as a result of the intervention may not be significant. Conclusions: A considerable number of patients reported that PatientTIME did provide support. We found a trend indicating that in the long run, patients with access to PatientTIME scored better on the perceived efficacy scale than patients without access. However, at this stage we cannot conclude that PatientTIME improves patients' confidence when interacting with HCPs. ClinicalTrial: Netherlands National Trial Register (NTR): 3779; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3779 (archived by WebCite at http://www.webcitation.org/6iztxJ5Nt) ", doi="10.2196/jmir.5877", url="http://www.jmir.org/2016/7/e206/", url="http://www.ncbi.nlm.nih.gov/pubmed/27473173" } @Article{info:doi/10.2196/jmir.5813, author="Hong, Hee Song and Lee, Woojung and AlRuthia, Yazed", title="Health Care Applicability of a Patient-Centric Web Portal for Patients' Medication Experience", journal="J Med Internet Res", year="2016", month="Jul", day="22", volume="18", number="7", pages="e202", keywords="patient-physician communication", keywords="medication experience outcomes", keywords="patient reports", keywords="Internet", keywords="patient-centered practice", keywords="Web portal", abstract="Background: With the advent of the patient-centered care paradigm, it is important to examine what patients' reports of medication experience (PROME) mean to patient care. PROME available through a Web portal provide information on medication treatment options and outcomes from the patient's perspective. Patients who find certain PROME compelling are likely to mention them at their physician visit, triggering a discussion between the patient and the physician. However, no studies have examined PROME's potential applicability to patient care. Objective: This study aimed to examine older (?50 years) adults' perceptions of the health care applicability of a hypothetical PROME Web portal. Specifically, this study investigated whether PROME would facilitate patient-physician communication, and identified the preferred reporting items and the trusted sponsors of such a PROME Web portal. Methods: We used a cross-sectional, self-administered, 5-point Likert scale survey to examine participants' perceptions of a hypothetical PROME Web portal that compared PROME for 5 common antihypertensive medications. Between August and December 2013, we recruited 300 members of 7 seniors' centers in a metropolitan area of a southeastern state of the United States to participate in the survey. Results: An overwhelming majority of study participants (243/300, 81.0\%) had a favorable perception of PROME's health care applicability. They were mostly positive that PROME would facilitate patient-physician communication, except for the perception that physicians would be upset by the mention of PROME (n=133, 44.3\%). Further, 85.7\% (n=257) of participants considered the PROME information trustworthy, and 72.0\% (n=216) were willing to participate by reporting their own medication experiences. Study participants wanted the PROME Web portal to report the number of reviews, star ratings, and individual comments concerning different medication attributes such as side effects (224/809, 27.7\%), cost (168/809, 20.8\%), and effectiveness (153/809, 18.9\%). Finally, the PROME Web portal sponsorship was important to participants, with the most trusted sponsor being academic institutions (120/400, 30.0\%). Conclusions: PROME, if well compiled through Web portals, have the potential to facilitate patient-physician communication. ", doi="10.2196/jmir.5813", url="http://www.jmir.org/2016/7/e202/", url="http://www.ncbi.nlm.nih.gov/pubmed/27450362" } @Article{info:doi/10.2196/jmir.5972, author="DeAndrea, Christopher David and Vendemia, Ashley Megan", title="How Affiliation Disclosure and Control Over User-Generated Comments Affects Consumer Health Knowledge and Behavior: A Randomized Controlled Experiment of Pharmaceutical Direct-to-Consumer Advertising on Social Media", journal="J Med Internet Res", year="2016", month="Jul", day="19", volume="18", number="7", pages="e189", keywords="direct-to-consumer advertising", keywords="DTCA", keywords="social media", keywords="Facebook", keywords="pharmaceutical marketing", keywords="online promotion of prescription drugs", keywords="health communication", abstract="Background: More people are seeking health information online than ever before and pharmaceutical companies are increasingly marketing their drugs through social media. Objective: The aim was to examine two major concerns related to online direct-to-consumer pharmaceutical advertising: (1) how disclosing an affiliation with a pharmaceutical company affects how people respond to drug information produced by both health organizations and online commenters, and (2) how knowledge that health organizations control the display of user-generated comments affects consumer health knowledge and behavior. Methods: We conducted a 2{\texttimes}2{\texttimes}2 between-subjects experiment (N=674). All participants viewed an infographic posted to Facebook by a health organization about a prescription allergy drug. Across conditions, the infographic varied in the degree to which the health organization and commenters appeared to be affiliated with a drug manufacturer, and the display of user-generated comments appeared to be controlled. Results: Affiliation disclosure statements on a health organization's Facebook post increased perceptions of an organization-drug manufacturer connection, which reduced trust in the organization (point estimate --0.45, 95\% CI --0.69 to --0.24) and other users who posted comments about the drug (point estimate --0.44, 95\% CI --0.68 to --0.22). Furthermore, increased perceptions of an organization-manufacturer connection reduced the likelihood that people would recommend the drug to important others (point estimate --0.35, 95\% CI --0.59 to --0.15), and share the drug post with others on Facebook (point estimate --0.37, 95\% CI --0.64 to --0.16). An affiliation cue next to the commenters' names increased perceptions that the commenters were affiliated with the drug manufacturer, which reduced trust in the comments (point estimate --0.81, 95\% CI --1.04 to --0.59), the organization that made the post (point estimate --0.68, 95\% CI --0.90 to --0.49), the likelihood of participants recommending the drug (point estimate --0.61, 95\% CI --0.82 to --0.43), and sharing the post with others on Facebook (point estimate --0.63, 95\% CI --0.87 to --0.43). Cues indicating that a health organization removed user-generated comments from a post increased perceptions that the drug manufacturer influenced the display of the comments, which negatively affected trust in the comments (point estimate --0.35, 95\% CI --0.53 to --0.20), the organization (point estimate --0.31, 95\% CI --0.47 to --0.17), the likelihood of recommending the drug (point estimate --0.26, 95\% CI --0.41 to --0.14), and the likelihood of sharing the post with others on Facebook (point estimate --0.28, 95\% CI --0.45 to --0.15). (All estimates are unstandardized indirect effects and 95\% bias-corrected bootstrap confidence intervals.) Conclusions: Concern over pharmaceutical companies hiding their affiliations and strategically controlling user-generated comments is well founded; these practices can greatly affect not only how viewers evaluate drug information online, but also how likely they are to propagate the information throughout their online and offline social networks. ", doi="10.2196/jmir.5972", url="http://www.jmir.org/2016/7/e189/", url="http://www.ncbi.nlm.nih.gov/pubmed/27435883" } @Article{info:doi/10.2196/publichealth.5390, author="Assi, Sulaf and Thomas, Jordan and Haffar, Mohamed and Osselton, David", title="Exploring Consumer and Patient Knowledge, Behavior, and Attitude Toward Medicinal and Lifestyle Products Purchased From the Internet: A Web-Based Survey", journal="JMIR Public Health Surveill", year="2016", month="Jul", day="18", volume="2", number="2", pages="e34", keywords="consumer knowledge", keywords="attitude", keywords="behaviour authenticity", keywords="effectiveness", keywords="toxicity", keywords="counterfeit", keywords="medicinal and lifestyle products", keywords="Internet", abstract="Background: In recent years, lifestyle products have emerged to help improve people's physical and mental performance. The Internet plays a major role in the spread of these products. However, the literature has reported issues regarding the authenticity of medicines purchased from the Internet and the impact of counterfeit medicines on public health. Little or no data are available on the authenticity of lifestyle products and actual toxicity associated with their use and misuse. Objective: Our aim was to investigate consumer and patient attitudes toward the purchase of lifestyle products from the Internet, their knowledge of product authenticity and toxicity, and their experiences with counterfeit lifestyle products. Methods: A Web-based study was performed between May 2014 and May 2015. Uniform collection of data was performed through an anonymous online questionnaire. Participants were invited worldwide via email, social media, or personal communication to complete the online questionnaire. A total of 320 participants completed the questionnaire. Results: The results of the questionnaire showed that 208 (65.0\%) participants purchased lifestyle products from the Internet mainly due to convenience and reduced cost. More than half (55.6\%, 178/320) of participants purchased cosmetic products, whereas only a minority purchased medicinal products. Yet, 62.8\% (201/320) of participants were aware of the presence of counterfeit lifestyle products from the Internet, and 11.9\% (38/320) experienced counterfeit products. In only 0.9\% (3/320) of those cases were counterfeit lifestyle products reported to authorities. Moreover, 7.2\% (23/320) of the participants experienced adverse effects due to counterfeit lifestyle products. Conclusions: In summary, patients experienced counterfeit lifestyle products that resulted in adverse effects on their health. Although certain adverse effects were reported in this study, counterfeit products were underreported to authorities. Further public awareness campaigns and patient education are needed. ", doi="10.2196/publichealth.5390", url="http://publichealth.jmir.org/2016/2/e34/", url="http://www.ncbi.nlm.nih.gov/pubmed/27430264" } @Article{info:doi/10.2196/jmir.5413, author="Mitsutake, Seigo and Shibata, Ai and Ishii, Kaori and Oka, Koichiro", title="Associations of eHealth Literacy With Health Behavior Among Adult Internet Users", journal="J Med Internet Res", year="2016", month="Jul", day="18", volume="18", number="7", pages="e192", keywords="health literacy", keywords="ehealth literacy", keywords="epatients", keywords="Internet", keywords="health behavior", keywords="cross-sectional studies", abstract="Background: In the rapidly developing use of the Internet in society, eHealth literacy---having the skills to utilize health information on the Internet---has become an important prerequisite for promoting healthy behavior. However, little is known about whether eHealth literacy is associated with health behavior in a representative sample of adult Internet users. Objective: The aim of this study was to examine the association between eHealth literacy and general health behavior (cigarette smoking, physical exercise, alcohol consumption, sleeping hours, eating breakfast, eating between meals, and balanced nutrition) among adult Internet users in Japan. Methods: The participants were recruited among registrants of a Japanese Internet research service company and asked to answer a cross-sectional Internet-based survey in 2012. The potential respondents (N=10,178) were randomly and blindly invited via email from the registrants in accordance with the set sample size and other attributes. eHealth literacy was assessed using the Japanese version of the eHealth Literacy Scale. The self-reported health behaviors investigated included never smoking cigarettes, physical exercise, alcohol consumption, sleeping hours, eating breakfast, not eating between meals, and balanced nutrition. We obtained details of sociodemographic attributes (sex, age, marital status, educational attainment, and household income level) and frequency of conducting Internet searches. To determine the association of each health behavior with eHealth literacy, we performed a logistic regression analysis; we adjusted for sociodemographic attributes and frequency of Internet searching as well as for other health behaviors that were statistically significant with respect to eHealth literacy in univariate analyses. Results: We analyzed the data of 2115 adults (response rate: 24.04\%, 2142/10,178; male: 49.74\%, 1052/2115; age: mean 39.7, SD 10.9 years) who responded to the survey. Logistic regression analysis showed that individuals with high eHealth literacy were significantly more likely to exhibit the good health behaviors of physical exercise (adjusted odds ratio [AOR] 1.377, 95\% CI 1.131-1.678) and eating a balanced diet (AOR 1.572, 95\% CI 1.274-1.940) than individuals with low eHealth literacy. Conclusions: We found that some health behaviors, including exercise and balanced nutrition, were independently associated with eHealth literacy among Japanese adult Internet users. ", doi="10.2196/jmir.5413", url="http://www.jmir.org/2016/7/e192/", url="http://www.ncbi.nlm.nih.gov/pubmed/27432783" } @Article{info:doi/10.2196/jmir.5065, author="Gonzalez, Mariaelena and Sanders-Jackson, Ashley and Emory, Jason", title="Online Health Information-Seeking Behavior and Confidence in Filling Out Online Forms Among Latinos: A Cross-Sectional Analysis of the California Health Interview Survey, 2011-2012", journal="J Med Internet Res", year="2016", month="Jul", day="04", volume="18", number="7", pages="e184", keywords="communications media", keywords="social media", keywords="health information-seeking behavior", keywords="online forms", keywords="Hispanic Americans", abstract="Background: Health information is increasingly being disseminated online, but there is a knowledge gap between Latinos and non-Hispanic whites, particularly those whose English language proficiency is poor, in terms both of online health information-seeking behavior and computer literacy skills. This knowledge gap may also exist between US- and foreign-born Latinos. Objective: The specific aim of this study was to examine Internet use, online health information-seeking behavior, and confidence in filling out online forms among Latinos, particularly as it relates to health-risk behaviors. We then stratified our sample by nativity. Methods: We used the adult population file of the 2011-2012 California Health Interview Survey, analyzing Internet use, online health information-seeking behavior, and confidence in filling out online forms using binary logistic regression among Latinos and whites (N=27,289), Latinos (n=9506), and Latinos who use the Internet (n=6037). Results: Foreign-born Latinos (OR 0.71, 95\% CI 0.58-0.88, P=.002) have lower odds of engaging in online health information-seeking behavior, and higher odds (OR 2.90, 95\% CI 2.07-4.06, P<.001) of reporting a lack of confidence in filling out online forms compared to US-born Latinos. Correlates of online health information-seeking behavior and form confidence varied by nativity. Conclusions: Latinos, particularly foreign-born individuals, are at an increased risk of being left behind as the move to increase online content delivery and care expands. As online health information dissemination and online health portals become more popular, the impact of these sites on Latino gaps in coverage and care should be considered. ", doi="10.2196/jmir.5065", url="http://www.jmir.org/2016/7/e184/", url="http://www.ncbi.nlm.nih.gov/pubmed/27377466" } @Article{info:doi/10.2196/jmir.5610, author="Fiks, G. Alexander and DuRivage, Nathalie and Mayne, L. Stephanie and Finch, Stacia and Ross, E. Michelle and Giacomini, Kelli and Suh, Andrew and McCarn, Banita and Brandt, Elias and Karavite, Dean and Staton, W. Elizabeth and Shone, P. Laura and McGoldrick, Valerie and Noonan, Kathleen and Miller, Dorothy and Lehmann, U. Christoph and Pace, D. Wilson and Grundmeier, W. Robert", title="Adoption of a Portal for the Primary Care Management of Pediatric Asthma: A Mixed-Methods Implementation Study", journal="J Med Internet Res", year="2016", month="Jun", day="29", volume="18", number="6", pages="e172", keywords="asthma", keywords="electronic health records", keywords="health information technology", abstract="Background: Patient portals may improve communication between families of children with asthma and their primary care providers and improve outcomes. However, the feasibility of using portals to collect patient-reported outcomes from families and the barriers and facilitators of portal implementation across diverse pediatric primary care settings have not been established. Objective: We evaluated the feasibility of using a patient portal for pediatric asthma in primary care, its impact on management, and barriers and facilitators of implementation success. Methods: We conducted a mixed-methods implementation study in 20 practices (11 states). Using the portal, parents of children with asthma aged 6-12 years completed monthly surveys to communicate treatment concerns, treatment goals, symptom control, medication use, and side effects. We used logistic regression to evaluate the association of portal use with child characteristics and changes to asthma management. Ten clinician focus groups and 22 semistructured parent interviews explored barriers and facilitators of use in the context of an evidence-based implementation framework. Results: We invited 9133 families to enroll and 237 (2.59\%) used the portal (range by practice, 0.6\%-13.6\%). Children of parents or guardians who used the portal were significantly more likely than nonusers to be aged 6-9 years (vs 10-12, P=.02), have mild or moderate/severe persistent asthma (P=.009 and P=.04), have a prescription of a controller medication (P<.001), and have private insurance (P=.002). Portal users with uncontrolled asthma had significantly more medication changes and primary care asthma visits after using the portal relative to the year earlier (increases of 14\% and 16\%, respectively). Qualitative results revealed the importance of practice organization (coordinated workflows) as well as family (asthma severity) and innovation (facilitated communication and ease of use) characteristics for implementation success. Conclusions: Although use was associated with higher treatment engagement, our results suggest that achieving widespread portal adoption is unlikely in the short term. Implementation efforts should include workflow redesign and prioritize enrollment of symptomatic children. ClinicalTrial: Clinicaltrials.gov NCT01966068; https://clinicaltrials.gov/ct2/show/NCT01966068 (Archived by WebCite at http://www.webcitation.org/6i9iSQkm3) ", doi="10.2196/jmir.5610", url="http://www.jmir.org/2016/6/e172/", url="http://www.ncbi.nlm.nih.gov/pubmed/27357835" } @Article{info:doi/10.2196/jmir.5568, author="Lorig, Kate and Ritter, L. Philip and Turner, M. Ralph and English, Kathleen and Laurent, D. Diana and Greenberg, Jay", title="Benefits of Diabetes Self-Management for Health Plan Members: A 6-Month Translation Study", journal="J Med Internet Res", year="2016", month="Jun", day="24", volume="18", number="6", pages="e164", keywords="patient education", keywords="self-management", keywords="type 2 diabetes", keywords="translation and dissemination", abstract="Background: Diabetes self-management education has been shown to be effective in controlled trials. However, few programs that meet American Association of Diabetes Educators standards have been translated into widespread practice. Objective: This study examined the translation of the evidence-based Better Choices, Better Health-Diabetes program in both Internet and face-to-face versions. Methods: We administered the Internet program nationally in the United States (n=1010). We conducted face-to-face workshops in Atlanta, Georgia; Indianapolis, Indiana; and St. Louis, Missouri (n=232). Self-report questionnaires collected health indicator, health behavior, and health care utilization measures. Questionnaires were administered on the Web or by mail. We determined hemoglobin A1c (HbA1c) from blood samples collected via mailed kits. Paired t tests determined whether changes between baseline and 6 months differed significantly from no change. Subgroup analyses determined whether participants with specific conditions benefited (high HbA1c, depression, hypoglycemia, nonadherence to medication taking, and no aerobic exercise). We calculated the percentage of participants with improvements of at least 0.4 effect size in at least one of the 5 above measures. Results: Of the 1242 participants, 884 provided 6-month follow-up questionnaires. There were statistically significant improvements in 6 of 7 health indicators (including HbA1c) and in 7 of 7 behaviors. For each of the 5 conditions, there were significant improvements among those with the condition (effect sizes 0.59--1.1). A total of 662 (75.0\%) of study participants improved at least 0.4 effect size in at least one criterion, and 327 (37.1\%) improved in 2 or more. Conclusions: The Diabetes Self-Management Program, offered in two modes, was successfully disseminated to a heterogeneous national population of members of either insured or administered health plans. Participants had small but significant benefits in multiple measures. The program appears effective in improving diabetes management. ", doi="10.2196/jmir.5568", url="http://www.jmir.org/2016/6/e164/", url="http://www.ncbi.nlm.nih.gov/pubmed/27342265" } @Article{info:doi/10.2196/jmir.5521, author="Mazzocut, Mauro and Truccolo, Ivana and Antonini, Marialuisa and Rinaldi, Fabio and Omero, Paolo and Ferrarin, Emanuela and De Paoli, Paolo and Tasso, Carlo", title="Web Conversations About Complementary and Alternative Medicines and Cancer: Content and Sentiment Analysis", journal="J Med Internet Res", year="2016", month="Jun", day="16", volume="18", number="6", pages="e120", keywords="complementary and alternative medicine", keywords="Internet", keywords="neoplasms", keywords="health information online", keywords="website content analysis", keywords="barriers to patient-doctor communication", keywords="misinformation", keywords="sentiment analysis", keywords="data mining", abstract="Background: The use of complementary and alternative medicine (CAM) among cancer patients is widespread and mostly self-administrated. Today, one of the most relevant topics is the nondisclosure of CAM use to doctors. This general lack of communication exposes patients to dangerous behaviors and to less reliable information channels, such as the Web. The Italian context scarcely differs from this trend. Today, we are able to mine and analyze systematically the unstructured information available in the Web, to get an insight of people's opinions, beliefs, and rumors concerning health topics. Objective: Our aim was to analyze Italian Web conversations about CAM, identifying the most relevant Web sources, therapies, and diseases and measure the related sentiment. Methods: Data have been collected using the Web Intelligence tool ifMONITOR. The workflow consisted of 6 phases: (1) eligibility criteria definition for the ifMONITOR search profile; (2) creation of a CAM terminology database; (3) generic Web search and automatic filtering, the results have been manually revised to refine the search profile, and stored in the ifMONITOR database; (4) automatic classification using the CAM database terms; (5) selection of the final sample and manual sentiment analysis using a 1-5 score range; (6) manual indexing of the Web sources and CAM therapies type retrieved. Descriptive univariate statistics were computed for each item: absolute frequency, percentage, central tendency (mean sentiment score [MSS]), and variability (standard variation $\sigma$). Results: Overall, 212 Web sources, 423 Web documents, and 868 opinions have been retrieved. The overall sentiment measured tends to a good score (3.6 of 5). Quite a high polarization in the opinions of the conversation partaking emerged from standard variation analysis ($\sigma$?1). In total, 126 of 212 (59.4\%) Web sources retrieved were nonhealth-related. Facebook (89; 21\%) and Yahoo Answers (41; 9.7\%) were the most relevant. In total, 94 CAM therapies have been retrieved. Most belong to the ``biologically based therapies or nutrition'' category: 339 of 868 opinions (39.1\%), showing an MSS of 3.9 ($\sigma$=0.83). Within nutrition, ``diets'' collected 154 opinions (18.4\%) with an MSS of 3.8 ($\sigma$=0.87); ``food as CAM'' overall collected 112 opinions (12.8\%) with a MSS of 4 ($\sigma$=0.68). Excluding diets and food, the most discussed CAM therapy is the controversial Italian ``Di Bella multitherapy'' with 102 opinions (11.8\%) with an MSS of 3.4 ($\sigma$=1.21). Breast cancer was the most mentioned disease: 81 opinions of 868. Conclusions: Conversations about CAM and cancer are ubiquitous. There is a great concern about the biologically based therapies, perceived as harmless and useful, under-rating all risks related to dangerous interactions or malnutrition. Our results can be useful to doctors to be aware of the implications of these beliefs for the clinical practice. Web conversation exploitation could be a strategy to gain insights of people's perspective for other controversial topics. ", doi="10.2196/jmir.5521", url="http://www.jmir.org/2016/6/e120/", url="http://www.ncbi.nlm.nih.gov/pubmed/27311444" } @Article{info:doi/10.2196/jmir.5442, author="Bernard, Renaldo and Sabariego, Carla and Cieza, Alarcos", title="Barriers and Facilitation Measures Related to People With Mental Disorders When Using the Web: A Systematic Review", journal="J Med Internet Res", year="2016", month="Jun", day="09", volume="18", number="6", pages="e157", keywords="World Wide Web", keywords="mental disorders", keywords="systematic review", keywords="accessibility", keywords="interaction design", keywords="Web-based interaction", abstract="Background: Mental disorders (MDs) affect almost 1 in 4 adults at some point during their lifetime, and coupled with substance use disorders are the fifth leading cause of disability adjusted life years worldwide. People with these disorders often use the Web as an informational resource, platform for convenient self-directed treatment, and a means for many other kinds of support. However, some features of the Web can potentially erect barriers for this group that limit their access to these benefits, and there is a lack of research looking into this eventuality. Therefore, it is important to identify gaps in knowledge about ``what'' barriers exist and ``how'' they could be addressed so that this knowledge can inform Web professionals who aim to ensure the Web is inclusive to this population. Objective: The objective of this study was to provide an overview of existing evidence regarding the barriers people with mental disorders experience when using the Web and the facilitation measures used to address such barriers. Methods: This study involved a systematic review of studies that have considered the difficulties people with mental disorders experience when using digital technologies. Digital technologies were included because knowledge about any barriers here would likely be also applicable to the Web. A synthesis was performed by categorizing data according to the 4 foundational principles of Web accessibility as proposed by the World Wide Web Consortium, which forms the necessary basis for anyone to gain adequate access to the Web. Facilitation measures recommended by studies were later summarized into a set of minimal recommendations. Results: A total of 16 publications were included in this review, comprising 13 studies and 3 international guidelines. Findings suggest that people with mental disorders experience barriers that limit how they perceive, understand, and operate websites. Identified facilitation measures target these barriers in addition to ensuring that Web content can be reliably interpreted by a wide range of user applications. Conclusions: People with mental disorders encounter barriers on the Web, and attempts have been made to remove or reduce these barriers. As forewarned by experts in the area, only a few studies investigating this issue were found. More rigorous research is needed to be exhaustive and to have a larger impact on improving the Web for people with mental disorders. ", doi="10.2196/jmir.5442", url="http://www.jmir.org/2016/6/e157/", url="http://www.ncbi.nlm.nih.gov/pubmed/27282115" } @Article{info:doi/10.2196/jmir.5661, author="Pang, Cheong-Iao Patrick and Chang, Shanton and Verspoor, Karin and Pearce, Jon", title="Designing Health Websites Based on Users' Web-Based Information-Seeking Behaviors: A Mixed-Method Observational Study", journal="J Med Internet Res", year="2016", month="Jun", day="06", volume="18", number="6", pages="e145", keywords="consumer health information", keywords="public health informatics", keywords="exploratory behavior", keywords="hypermedia", abstract="Background: Laypeople increasingly use the Internet as a source of health information, but finding and discovering the right information remains problematic. These issues are partially due to the mismatch between the design of consumer health websites and the needs of health information seekers, particularly the lack of support for ``exploring'' health information. Objective: The aim of this research was to create a design for consumer health websites by supporting different health information--seeking behaviors. We created a website called Better Health Explorer with the new design. Through the evaluation of this new design, we derive design implications for future implementations. Methods: Better Health Explorer was designed using a user-centered approach. The design was implemented and assessed through a laboratory-based observational study. Participants tried to use Better Health Explorer and another live health website. Both websites contained the same content. A mixed-method approach was adopted to analyze multiple types of data collected in the experiment, including screen recordings, activity logs, Web browsing histories, and audiotaped interviews. Results: Overall, 31 participants took part in the observational study. Our new design showed a positive result for improving the experience of health information seeking, by providing a wide range of information and an engaging environment. The results showed better knowledge acquisition, a higher number of page reads, and more query reformulations in both focused and exploratory search tasks. In addition, participants spent more time to discover health information with our design in exploratory search tasks, indicating higher engagement with the website. Finally, we identify 4 design considerations for designing consumer health websites and health information--seeking apps: (1) providing a dynamic information scope; (2) supporting serendipity; (3) considering trust implications; and (4) enhancing interactivity. Conclusions: Better Health Explorer provides strong support for the heterogeneous and shifting behaviors of health information seekers and eases the health information--seeking process. Our findings show the importance of understanding different health information--seeking behaviors and highlight the implications for designers of consumer health websites and health information--seeking apps. ", doi="10.2196/jmir.5661", url="http://www.jmir.org/2016/6/e145/", url="http://www.ncbi.nlm.nih.gov/pubmed/27267955" } @Article{info:doi/10.2196/jmir.5447, author="Cutrona, L. Sarah and Mazor, M. Kathleen and Agunwamba, A. Amenah and Valluri, Sruthi and Wilson, M. Patrick and Sadasivam, S. Rajani and Finney Rutten, J. Lila", title="Health Information Brokers in the General Population: An Analysis of the Health Information National Trends Survey 2013-2014", journal="J Med Internet Res", year="2016", month="Jun", day="03", volume="18", number="6", pages="e123", keywords="health information seeking", keywords="peer communication", keywords="social network", keywords="patient self-management", keywords="health care decision-making", abstract="Background: Health information exchanged between friends or family members can influence decision making, both for routine health questions and for serious health issues. A health information broker is a person to whom friends and family turn for advice or information on health-related topics. Characteristics and online behaviors of health information brokers have not previously been studied in a national population. Objective: The objective of this study was to examine sociodemographic characteristics, health information seeking behaviors, and other online behaviors among health information brokers. Methods: Data from the Health Information National Trends Survey (2013-2014; n=3142) were used to compare brokers with nonbrokers. Modified Poisson regression was used to examine the relationship between broker status and sociodemographics and online information seeking. Results: Over half (54.8\%) of the respondents were consulted by family or friends for advice or information on health topics (ie, they acted as health information brokers). Brokers represented 54.1\% of respondents earning <\$20,000 yearly and 56.5\% of respondents born outside the United States. Women were more likely to be brokers (PR 1.34, 95\% CI 1.23-1.47) as were those with education past high school (PR 1.42, CI 1.22-1.65). People aged ?75 were less likely to be brokers as compared to respondents aged 35-49 (PR 0.81, CI 0.67-0.99). Brokers used the Internet more frequently for a variety of online behaviors such as seeking health information, creating and sharing online content, and downloading health information onto a mobile device; and also reported greater confidence in obtaining health information online. Conclusions: More than 50\% of adults who responded to this national survey, including those with low income and those born abroad, were providing health information or advice to friends and family. These individuals may prove to be effective targets for initiatives supporting patient engagement and disease management, and may also be well-positioned within their respective social networks to propagate health messages. ", doi="10.2196/jmir.5447", url="http://www.jmir.org/2016/6/e123/", url="http://www.ncbi.nlm.nih.gov/pubmed/27260952" } @Article{info:doi/10.2196/jmir.5417, author="Sanchez, Ninive and Jones, Hillary", title="``Less Than A Wife'': A Study of Polycystic Ovary Syndrome Content in Teen and Women's Digital Magazines", journal="J Med Internet Res", year="2016", month="Jun", day="02", volume="18", number="6", pages="e89", keywords="polycystic ovary syndrome", keywords="digital magazines", keywords="women's health", keywords="edutainment", abstract="Background: Polycystic ovary syndrome (PCOS) is a major public health problem that affects women's physical and mental health. According to the US National Institutes of Health Office of Disease Prevention, there is a need to improve public awareness of the syndrome among health care providers and the public. Women's magazines are a type of ``edutainment'' that publish health content in addition to beauty, fashion, and entertainment content. These media have the potential to expose primarily female readers to content on PCOS and influence readers' beliefs and attitudes about women with PCOS. Objective: The objective of this study was to explore how digital (online) teen and women's magazines portray women with PCOS. Methods: We used data from the Alliance for Audited Media to identify popular digital teen and women's magazines with circulation rates ?1,000,001. We also included magazines with circulation rates 100,001--1,000,000 directed toward racial and ethnic minority readers. A search of magazine websites over a 1-month period in 2015 yielded 21 magazines (eg, Glamour, Cosmopolitan en Espa{\~n}ol, Essence, and O, The Oprah Magazine) and 170 articles containing ``PCOS'' and ``polycystic ovary syndrome.'' Textual analysis using a grounded theory approach was used to identify themes. Results: Articles depicted PCOS symptoms as a hindrance to women's social roles as wives and mothers and largely placed personal responsibility on women to improve their health. To a lesser extent, women were depicted as using their personal experience with PCOS to advocate for women's health. Experiences of Latina and African American women and adolescents with PCOS were absent from women's magazine articles. Conclusions: The findings can inform health education programs that teach women to be critical consumers of PCOS-related content in digital women's magazines. Future research on PCOS content in digital teen and women's magazines can help researchers, patients, and consumer groups engage with the media to increase public awareness of PCOS. ", doi="10.2196/jmir.5417", url="http://www.jmir.org/2016/6/e89/", url="http://www.ncbi.nlm.nih.gov/pubmed/27255809" } @Article{info:doi/10.2196/jmir.5000, author="Almalki, Manal and Gray, Kathleen and Martin-Sanchez, Fernando", title="Activity Theory as a Theoretical Framework for Health Self-Quantification: A Systematic Review of Empirical Studies", journal="J Med Internet Res", year="2016", month="May", day="27", volume="18", number="5", pages="e131", keywords="activities of daily living", keywords="diagnostic self-evaluation", keywords="patient activation", keywords="patient participation", keywords="self-care", keywords="self-experimentation", keywords="self-management", keywords="user-computer interface", keywords="activity theory", keywords="human-computer interaction", keywords="self-quantification", keywords="self-tracking", keywords="personal informatics", keywords="quantified self", keywords="self-monitoring", abstract="Background: Self-quantification (SQ) is a way of working in which, by using tracking tools, people aim to collect, manage, and reflect on personal health data to gain a better understanding of their own body, health behavior, and interaction with the world around them. However, health SQ lacks a formal framework for describing the self-quantifiers' activities and their contextual components or constructs to pursue these health related goals. Establishing such framework is important because it is the first step to operationalize health SQ fully. This may in turn help to achieve the aims of health professionals and researchers who seek to make or study changes in the self-quantifiers' health systematically. Objective: The aim of this study was to review studies on health SQ in order to answer the following questions: What are the general features of the work and the particular activities that self-quantifiers perform to achieve their health objectives? What constructs of health SQ have been identified in the scientific literature? How have these studies described such constructs? How would it be possible to model these constructs theoretically to characterize the work of health SQ? Methods: A systematic review of peer-reviewed literature was conducted. A total of 26 empirical studies were included. The content of these studies was thematically analyzed using Activity Theory as an organizing framework. Results: The literature provided varying descriptions of health SQ as data-driven and objective-oriented work mediated by SQ tools. From the literature, we identified two types of SQ work: work on data (ie, data management activities) and work with data (ie, health management activities). Using Activity Theory, these activities could be characterized into 6 constructs: users, tracking tools, health objectives, division of work, community or group setting, and SQ plan and rules. We could not find a reference to any single study that accounted for all these activities and constructs of health SQ activity. Conclusions: A Health Self-Quantification Activity Framework is presented, which shows SQ tool use in context, in relation to the goals, plans, and competence of the user. This makes it easier to analyze issues affecting SQ activity, and thereby makes it more feasible to address them. This review makes two significant contributions to research in this field: it explores health SQ work and its constructs thoroughly and it adapts Activity Theory to describe health SQ activity systematically. ", doi="10.2196/jmir.5000", url="http://www.jmir.org/2016/5/e131/", url="http://www.ncbi.nlm.nih.gov/pubmed/27234343" } @Article{info:doi/10.2196/jmir.5270, author="Fredriksen, Haukeland Eva and Harris, Janet and Moland, Marie Karen", title="Web-based Discussion Forums on Pregnancy Complaints and Maternal Health Literacy in Norway: A Qualitative Study", journal="J Med Internet Res", year="2016", month="May", day="26", volume="18", number="5", pages="e113", keywords="qualitative research", keywords="Internet", keywords="pregnancy", keywords="health literacy", keywords="web-based discussion forums", keywords="pelvic girdle pain", abstract="Background: The Internet is one of the fastest growing information sources for pregnant women and seems to be used across social and economic strata. However, we still lack knowledge on how interaction in Web-based discussion forums influence maternal health literacy, in terms of how pregnant women access, appraise, and apply information to promote and maintain good health. Objective: The aim of this study was to understand how Web-based discussion forums influence maternal health literacy; hence, we explored the role of interactions in Web-based discussion forums among women who experienced health problems during pregnancy. More specifically, we explored why media-literate women experiencing the medically unexplained condition, pelvic girdle pain (PGP), during pregnancy participated in Web-based discussion forums and how they appraised and applied the information and advice that they gained from the Web-based interaction with other women. Methods: Women were invited to participate in the study via postings on 3 different open websites for pregnant women and mothers. The sample included 11 Norwegian women who participated in open Web-based discussion forums when experiencing PGP in pregnancy. The data were collected using synchronous qualitative email interviews and were analyzed using thematic analysis. Results: In our study sample, interaction in Web-based discussion forums influenced maternal health literacy in terms of increased health-related knowledge and competencies, increased awareness of health promotion and health protection, and increased system navigation. The women appraised and selectively applied information and advice that resonated with their own experiences. For many, the information provided online by other women in the same situation was valued more highly than advice from health professionals. Women reported that they used their knowledge and competency in encounters with health professionals but hesitated to disclose the origin of their knowledge. Those with a high level of education in medicine-related fields raised a concern about the Internet as a source of horror stories and erroneous information and were actively engaged in trying to minimize potential negative effects, by providing biomedical information. Conclusions: The popularity of Web-based discussion forums among pregnant women suggests that this group needs additional sources of information and support to complement traditional consultations with the health professionals. The professionals need to recognize that pregnant women access Web-based discussion forums for support and information to increase their ability to take better health decisions for themselves. This is a potential resource that health professionals may find useful in consultations with pregnant women. ", doi="10.2196/jmir.5270", url="http://www.jmir.org/2016/5/e113/", url="http://www.ncbi.nlm.nih.gov/pubmed/27230094" } @Article{info:doi/10.2196/jmir.5130, author="Eichler, S. Gabriel and Cochin, Elisenda and Han, Jian and Hu, Sylvia and Vaughan, E. Timothy and Wicks, Paul and Barr, Charles and Devenport, Jenny", title="Exploring Concordance of Patient-Reported Information on PatientsLikeMe and Medical Claims Data at the Patient Level", journal="J Med Internet Res", year="2016", month="May", day="12", volume="18", number="5", pages="e110", keywords="feasibility of data linking", keywords="patient-powered research network", abstract="Background: With the emergence of data generated by patient-powered research networks, it is informative to characterize their correspondence with health care system-generated data. Objectives: This study explored the linking of 2 disparate sources of real-world data: patient-reported data from a patient-powered research network (PatientsLikeMe) and insurance claims. Methods: Active patients within the PatientsLikeMe community, residing in the United States, aged 18 years or older, with a self-reported diagnosis of multiple sclerosis or Parkinson's disease (PD) were invited to participate during a 2-week period in December 2014. Patient-reported data were anonymously matched and compared to IMS Health medical and pharmacy claims data with dates of service between December 2009 and December 2014. Patient-level match (identity), diagnosis, and usage of disease-modifying therapies (DMTs) were compared between data sources. Results: Among 603 consenting patients, 94\% had at least 1 record in the IMS Health dataset; of these, there was 93\% agreement rate for multiple sclerosis diagnosis. Concordance on the use of any treatment was 59\%, and agreement on reports of specific treatment usage (within an imputed 5-year period) ranged from 73.5\% to 100\%. Conclusions: It is possible to match patient identities between the 2 data sources, and the high concordance at multiple levels suggests that the matching process was accurate. Likewise, the high degree of concordance suggests that these patients were able to accurately self-report their diagnosis and, to a lesser degree, their treatment usage. Further studies of linked data types are warranted to evaluate the use of enriched datasets to generate novel insights. ", doi="10.2196/jmir.5130", url="http://www.jmir.org/2016/5/e110/", url="http://www.ncbi.nlm.nih.gov/pubmed/27174602" } @Article{info:doi/10.2196/jmir.5369, author="Kanthawala, Shaheen and Vermeesch, Amber and Given, Barbara and Huh, Jina", title="Answers to Health Questions: Internet Search Results Versus Online Health Community Responses", journal="J Med Internet Res", year="2016", month="Apr", day="28", volume="18", number="4", pages="e95", keywords="health communication", keywords="online health communities", keywords="question types classification", keywords="self-management", keywords="health-related Internet behavior use", keywords="risk of misinformation", keywords="Internet", keywords="diabetes", abstract="Background: About 6 million people search for health information on the Internet each day in the United States. Both patients and caregivers search for information about prescribed courses of treatments, unanswered questions after a visit to their providers, or diet and exercise regimens. Past literature has indicated potential challenges around quality in health information available on the Internet. However, diverse information exists on the Internet---ranging from government-initiated webpages to personal blog pages. Yet we do not fully understand the strengths and weaknesses of different types of information available on the Internet. Objective: The objective of this research was to investigate the strengths and challenges of various types of health information available online and to suggest what information sources best fit various question types. Methods: We collected questions posted to and the responses they received from an online diabetes community and classified them according to Rothwell's classification of question types (fact, policy, or value questions). We selected 60 questions (20 each of fact, policy, and value) and the replies the questions received from the community. We then searched for responses to the same questions using a search engine and recorded the Results: Community responses answered more questions than did search results overall. Search results were most effective in answering value questions and least effective in answering policy questions. Community responses answered questions across question types at an equivalent rate, but most answered policy questions and the least answered fact questions. Value questions were most answered by community responses, but some of these answers provided by the community were incorrect. Fact question search results were the most clinically valid. Conclusions: The Internet is a prevalent source of health information for people. The information quality people encounter online can have a large impact on them. We present what kinds of questions people ask online and the advantages and disadvantages of various information sources in getting answers to those questions. This study contributes to addressing people's online health information needs. ", doi="10.2196/jmir.5369", url="http://www.jmir.org/2016/4/e95/", url="http://www.ncbi.nlm.nih.gov/pubmed/27125622" } @Article{info:doi/10.2196/ijmr.4295, author="O'Connor, I. Mary and Brennan, Katharyn and Kazmerchak, Shari and Pratt, Jason", title="YouTube Videos to Create a ``Virtual Hospital Experience'' for Hip and Knee Replacement Patients to Decrease Preoperative Anxiety: A Randomized Trial", journal="Interact J Med Res", year="2016", month="Apr", day="18", volume="5", number="2", pages="e10", keywords="hip arthroplasty", keywords="hip replacement", keywords="knee arthroplasty", keywords="knee replacement", keywords="preoperative anxiety", keywords="virtual hospital experience", keywords="YouTube videos", abstract="Background: With declining reimbursement to health care systems, face-to-face time between patients and providers to optimize preoperative education and counseling may be challenging. Objective: Because high patient anxiety prior to surgery has been linked to more severe and persistent pain after joint replacement surgery, the Orthopedic Surgery Department at Mayo Clinic in Florida created a playlist of 16 YouTube videos aimed at creating a virtual hospital experience for primary total hip and knee joint replacement patients. A randomized trial was then performed to evaluate the potential impact of viewing this playlist on preoperative anxiety. Methods: Each patient completed a Generalized Anxiety Disorder (GAD) score assessment at the time of the routine preoperative clinic visit and then randomized based on his/her gender, type of surgery, and initial GAD score to either the control group of standard education (education at face-to-face clinical visits as well as printed educational materials) or the treatment group (standard education plus access to the YouTube playlist). On the morning of the patient's surgery, the same survey was repeated. Of the 65 patients who consented to participate in the study, 53 completed the study (82\%) with 28 of 29 (97\% completed) in the control group and 25 of 36 (69\% completed) in the treatment group. Results: Overall, the results showed a trend toward less anxiety in patients who viewed the YouTube videos; this was exhibited by a reduction in the median GAD score by 1 point. This trend is more clearly present in patients with high preoperative anxiety (predominantly women), as seen in the reduction of the median GAD score by 6 points in the treatment group. Conclusions: Although our experience is limited, our results indicate that a series of tailored videos may decrease patient anxiety preoperatively. We recommend further exploration of both this concept and the use of social media tools in preoperative patient education. Trial Registration: Clinicaltrials.gov NCT02546180; http://clinicaltrials.gov/ct2/show/NCT02546180 (Archived by WebCite at http://www.webcitation.org/6f6y0Dw7d). ", doi="10.2196/ijmr.4295", url="http://www.i-jmr.org/2016/2/e10/", url="http://www.ncbi.nlm.nih.gov/pubmed/27091674" } @Article{info:doi/10.2196/jmir.5374, author="Bright, Philip and Hambly, Karen and Tamakloe, Sandra", title="What is the Profile of Individuals Joining the KNEEguru Online Health Community? A Cross-Sectional Mixed-Methods Study", journal="J Med Internet Res", year="2016", month="Apr", day="18", volume="18", number="4", pages="e84", keywords="Information seeking behaviour", keywords="Internet", keywords="Nonverbal communication", keywords="Knee-pain", abstract="Background: The use of the Internet for seekers of health-related information provides convenience and accessibility to diverse sources (of variable quality) for many medical conditions. There is a suggestion that patients may find empowerment by engaging with Internet health care strategies and communities. The profile of consumers of online health information on knee pain has not been explored. Objective: Our objective was to identify the characteristics and motivations of online health information-seekers accessing the online health community, KNEEguru (KG). The study was designed to obtain the respondents' sociodemographic profile, together with their main reasons and motivations for joining such a community, their health information-seeking behavior, the extent of their knee problems, and their general Internet usage. Methods: We undertook an online questionnaire survey, offered to users of the KG website from June to July 2012. A mix of open and closed questions was used to facilitate inductive enquiry. Quantitative responses were analyzed using univariate analysis; qualitative thematic analysis of the open responses was completed and a conceptual model was developed. Results: One-hundred and fifty-two respondents took part (11.56\% response rate, 152/1315), with a mean age of 40.1 years. Of this cohort, 61.2\% were female, 68.4\% were in domestic partnerships, 57.2\% were employed, 75.0\% had higher education qualifications, and 80.3\% were of white/Caucasian ethnicity. Females were associated with joining KG in order to get emotional support from other users (OR 2.11, 95\% CI 1.04 - 4.27, P=.04). Respondents' self-perception of health was associated with reported quality of life (OR 10.86, 95\% CI 3.85 - 30.43, P<.001). Facebook users were associated with joining KG to share experiences (OR 2.34, 95\% CI 1.04 - 5.56, P=.03). Post-surgery respondents were associated with joining KG to compare symptoms with other users (OR 7.31, 95\% CI 2.06 - 39.82, P<.001). Three key themes were induced: condition, emotion and support. Respondents expressed distress and frustration at uncertainty of prognosis around various knee conditions, with some users preferring to initially observe rather than engage. Conversely, a strong desire to inform and support other community members was stated with reciprocation of ideas and experiences. KG was conceptualized as a filter that takes an individual's condition and emotional response to that condition as basis for support; this filter facilitated validation as the outcome of engagement. Conclusions: This study, in line with wider literature, suggests that users of an online knee-specific community are typically female, middle-aged, white/Caucasian, married, employed, and have attained a level of higher education. These users demonstrate a pragmatic approach to health care information with altruistic motivations and a desire to share experiences as a means of validation. This finding emphasizes a means of promoting efficient and appropriate online health care, and demonstrates the benefits of the Internet as a viable complement to clinical engagement. ", doi="10.2196/jmir.5374", url="http://www.jmir.org/2016/4/e84/", url="http://www.ncbi.nlm.nih.gov/pubmed/27089531" } @Article{info:doi/10.2196/jmir.5409, author="Risson, Val{\'e}ry and Saini, Deepanshu and Bonzani, Ian and Huisman, Alice and Olson, Melvin", title="Patterns of Treatment Switching in Multiple Sclerosis Therapies in US Patients Active on Social Media: Application of Social Media Content Analysis to Health Outcomes Research", journal="J Med Internet Res", year="2016", month="Mar", day="17", volume="18", number="3", pages="e62", keywords="Internet", keywords="multiple sclerosis", keywords="outcomes assessment", keywords="drug switching", abstract="Background: Social media analysis has rarely been applied to the study of specific questions in outcomes research. Objective: The aim was to test the applicability of social media analysis to outcomes research using automated listening combined with filtering and analysis of data by specialists. After validation, the process was applied to the study of patterns of treatment switching in multiple sclerosis (MS). Methods: A comprehensive listening and analysis process was developed that blended automated listening with filtering and analysis of data by life sciences-qualified analysts and physicians. The population was patients with MS from the United States. Data sources were Facebook, Twitter, blogs, and online forums. Sources were searched for mention of specific oral, injectable, and intravenous (IV) infusion treatments. The representativeness of the social media population was validated by comparison with community survey data and with data from three large US administrative claims databases: MarketScan, PharMetrics Plus, and Department of Defense. Results: A total of 10,260 data points were sampled for manual review: 3025 from Twitter, 3771 from Facebook, 2773 from Internet forums, and 691 from blogs. The demographics of the social media population were similar to those reported from community surveys and claims databases. Mean age was 39 (SD 11) years and 14.56\% (326/2239) of the population was older than 50 years. Women, patients aged 30 to 49 years, and those diagnosed for more than 10 years were represented by more data points than other patients were. Women also accounted for a large majority (82.6\%, 819/991) of reported switches. Two-fifths of switching patients had lived with their disease for more than 10 years since diagnosis. Most reported switches (55.05\%, 927/1684) were from injectable to oral drugs with switches from IV therapies to orals the second largest switch (15.38\%, 259/1684). Switches to oral drugs accounted for more than 80\% (927/1114) of the switches away from injectable therapies. Four reasons accounted for more than 90\% of all switches: severe side effects, lack of efficacy, physicians' advice, and greater ease of use. Side effects were the main reason for switches to oral or to injectable therapies and search for greater efficacy was the most important factor in switches to IV therapies. Cost of medication was the reason for switching in less than 0.5\% of patients. Conclusions: Social intelligence can be applied to outcomes research with power to analyze MS patients' personal experiences of treatments and to chart the most common reasons for switching between therapies. ", doi="10.2196/jmir.5409", url="http://www.jmir.org/2016/3/e62/", url="http://www.ncbi.nlm.nih.gov/pubmed/26987964" } @Article{info:doi/10.2196/jmir.5140, author="Sassenberg, Kai and Greving, Hannah", title="Internet Searching About Disease Elicits a Positive Perception of Own Health When Severity of Illness Is High: A Longitudinal Questionnaire Study", journal="J Med Internet Res", year="2016", month="Mar", day="04", volume="18", number="3", pages="e56", keywords="health information", keywords="Internet search", keywords="threat", keywords="perception of own health", keywords="chronic inflammatory bowel disease", abstract="Background: The Internet is one of the primary sources for health information. However, in research, the effects of Internet use on the perception of one's own health have not received much attention so far. Objective: This study tested how Internet use for acquiring health information and severity of illness influence patients with a chronic disease with regard to the perception of their own health. Negative psychological states are known to lead to preferential processing of positive information. In particular, the self-directed nature of Internet use provides room for such biases. Therefore, we predicted that patients experiencing negative health states more frequently, due to more frequent episodes of a chronic illness, will gain a more positive perception of their health if they use the Internet frequently to gain health information, but not if they use the Internet rarely. This effect was not expected for other sources of information. Methods: A longitudinal questionnaire study with two measurement points---with a 7-month time lag---tested the hypothesis in a sample of patients with chronic inflammatory bowel disease (n=208). This study assessed patients' frequency of Internet use, their participation in online social support groups, their use of other sources of health information, and several indicators of the participants' perceptions of their own health. A structure equation model (SEM) was used to test the predictions separately for Internet searches and other sources of information. Results: Data analysis supported the prediction; the interaction between frequency of health-related information searches and frequency of episodes at the first measurement point (T1) was related to participants' positive perceptions of their own health at the second measurement point (T2) (B=.10, SE=.04, P=.02) above and beyond the perceptions of their own health at T1. When participants used the Internet relatively rarely (-1 SD), there was no relationship between frequency of episodes and positive perceptions of their own health (B=-.11, SE=.14, t203=-0.82, P=.41). In contrast, when participants used the Internet relatively often (+1 SD), the more frequently they had those episodes the more positive were the perceptions of their own health (B=.36, SE=.15, t203=2.43, P=.02). Additional SEM analyses revealed that this effect occurs exclusively when information is searched for on the Internet, but not when other sources of information are consulted, nor when online social support groups are joined. Conclusions: The results of this study suggest that patients might process information from the Internet selectively, in an unbalanced, biased fashion, with the formation of a self-serving (ie, positive) perception of own health. At the same time, this bias contributes to the ability of patients to cope psychologically with their disease. ", doi="10.2196/jmir.5140", url="http://www.jmir.org/2016/3/e56/", url="http://www.ncbi.nlm.nih.gov/pubmed/26944335" } @Article{info:doi/10.2196/ijmr.4217, author="Talboom-Kamp, PWA Esther and Verdijk, A. Noortje and Harmans, M. Lara and Numans, E. Mattijs and Chavannes, H. Niels", title="An eHealth Platform to Manage Chronic Disease in Primary Care: An Innovative Approach", journal="Interact J Med Res", year="2016", month="Feb", day="09", volume="5", number="1", pages="e5", keywords="eHealth", keywords="self-management", keywords="anticoagulation clinic", keywords="chronic obstructive pulmonary disease", keywords="venous thromboembolism", keywords="integrated disease management", keywords="chronically ill", keywords="telemonitoring", keywords="primary care", doi="10.2196/ijmr.4217", url="http://www.i-jmr.org/2016/1/e5/", url="http://www.ncbi.nlm.nih.gov/pubmed/26860333" } @Article{info:doi/10.2196/medinform.4514, author="Sawesi, Suhila and Rashrash, Mohamed and Phalakornkule, Kanitha and Carpenter, S. Janet and Jones, F. Josette", title="The Impact of Information Technology on Patient Engagement and Health Behavior Change: A Systematic Review of the Literature", journal="JMIR Med Inform", year="2016", month="Jan", day="21", volume="4", number="1", pages="e1", keywords="patient engagement", keywords="patient behavior", keywords="technology", keywords="Internet", keywords="web-based", keywords="cell phone", keywords="social media", abstract="Background: Advancements in information technology (IT) and its increasingly ubiquitous nature expand the ability to engage patients in the health care process and motivate health behavior change. Objective: Our aim was to systematically review the (1) impact of IT platforms used to promote patients' engagement and to effect change in health behaviors and health outcomes, (2) behavior theories or models applied as bases for developing these interventions and their impact on health outcomes, (3) different ways of measuring health outcomes, (4) usability, feasibility, and acceptability of these technologies among patients, and (5) challenges and research directions for implementing IT platforms to meaningfully impact patient engagement and health outcomes. Methods: PubMed, Web of Science, PsycINFO, and Google Scholar were searched for studies published from 2000 to December 2014. Two reviewers assessed the quality of the included papers, and potentially relevant studies were retrieved and assessed for eligibility based on predetermined inclusion criteria. Results: A total of 170 articles met the inclusion criteria and were reviewed in detail. Overall, 88.8\% (151/170) of studies showed positive impact on patient behavior and 82.9\% (141/170) reported high levels of improvement in patient engagement. Only 47.1\% (80/170) referenced specific behavior theories and only 33.5\% (57/170) assessed the usability of IT platforms. The majority of studies used indirect ways to measure health outcomes (65.9\%, 112/170). Conclusions: In general, the review has shown that IT platforms can enhance patient engagement and improve health outcomes. Few studies addressed usability of these interventions, and the reason for not using specific behavior theories remains unclear. Further research is needed to clarify these important questions. In addition, an assessment of these types of interventions should be conducted based on a common framework using a large variety of measurements; these measurements should include those related to motivation for health behavior change, long-standing adherence, expenditure, satisfaction, and health outcomes. ", doi="10.2196/medinform.4514", url="http://medinform.jmir.org/2016/1/e1/", url="http://www.ncbi.nlm.nih.gov/pubmed/26795082" } @Article{info:doi/10.2196/jmir.4818, author="Groen, G. Wim and Kuijpers, Wilma and Oldenburg, SA Hester and Wouters, WJM Michel and Aaronson, K. Neil and van Harten, H. Wim", title="Empowerment of Cancer Survivors Through Information Technology: An Integrative Review", journal="J Med Internet Res", year="2015", month="Nov", day="27", volume="17", number="11", pages="e270", keywords="review", keywords="neoplasms", keywords="Internet", keywords="technology", keywords="health education", keywords="chronic disease", keywords="power (psychology)", abstract="Background: Patient empowerment may be an effective approach to strengthen the role of cancer survivors and to reduce the burden on health care. However, it is not well conceptualized, notably in oncology. Furthermore, it is unclear to what extent information technology (IT) services can contribute to empowerment of cancer survivors. Objective: We aim to define the conceptual components of patient empowerment of chronic disease patients, especially cancer survivors, and to explore the contribution of existing and new IT services to promote empowerment. Methods: Electronic databases were searched to identify theoretical and empirical articles regarding empowerment. We extracted and synthesized conceptual components of patient empowerment (ie, attributes, antecedents, and consequences) according to the integrated review methodology. We identified recent IT services for cancer survivors by examining systematic reviews and a proposed inventory of new services, and we related their features and effects to the identified components of empowerment. Results: Based on 26 articles, we identified five main attributes of patient empowerment: (1) being autonomous and respected, (2) having knowledge, (3) having psychosocial and behavioral skills, (4) perceiving support from community, family, and friends, and (5) perceiving oneself to be useful. The latter two were specific for the cancer setting. Systematic reviews of IT services and our additional inventory helped us identify five main categories: (1) educational services, including electronic survivorship care plan services, (2) patient-to-patient services, (3) electronic patient-reported outcome (ePRO) services, (4) multicomponent services, and (5) portal services. Potential impact on empowerment included knowledge enhancement and, to a lesser extent, enhancing autonomy and skills. Newly developed services offer promising and exciting opportunities to empower cancer survivors, for instance, by providing tailored advice for supportive or follow-up care based on patients' input. Conclusions: We identified five main components of empowerment and showed that IT services may especially contribute to empowerment by providing knowledge. The components of empowerment could be used to develop IT services for cancer survivors. It is important to take into account patients' needs, follow up on these needs, and create a service that is attractive and easy to use. ", doi="10.2196/jmir.4818", url="http://www.jmir.org/2015/11/e270/", url="http://www.ncbi.nlm.nih.gov/pubmed/26614438" } @Article{info:doi/10.2196/jmir.4872, author="Wright, Eric and Darer, Jonathan and Tang, Xiaoqin and Thompson, Jason and Tusing, Lorraine and Fossa, Alan and Delbanco, Tom and Ngo, Long and Walker, Jan", title="Sharing Physician Notes Through an Electronic Portal is Associated With Improved Medication Adherence: Quasi-Experimental Study", journal="J Med Internet Res", year="2015", month="Oct", day="08", volume="17", number="10", pages="e226", keywords="patient portal", keywords="adherence", keywords="progress notes", keywords="hypertension", keywords="hyperlipidemia", abstract="Background: In surveys, interviews, and focus groups, patients taking medications and offered Web portal access to their primary care physicians' (PCPs) notes report improved adherence to their regimens. However, objective confirmation has yet to be reported. Objective: To evaluate the association between patient Internet portal access to primary care physician visit notes and medication adherence. Methods: This study is a retrospective comparative analysis at one site of the OpenNotes quasi-experimental trial. The setting includes primary care practices at the Geisinger Health System (GHS) in Danville, Pennsylvania. Participants include patients 18 years of age or older with electronic portal access, GHS primary care physicians, and Geisinger health plan insurance, and taking at least one antihypertensive or antihyperlipidemic agent from March 2009 to June 2011. Starting in March 2010, intervention patients were invited and reminded to read their PCPs' notes. Control patients also had Web portal access throughout, but their PCPs' notes were not available. From prescription claims, adherence was assessed by using the proportion of days covered (PDC). Patients with a PDC ?.80 were considered adherent and were compared across groups using generalized linear models. Results: A total of 2147 patients (756 intervention participants, 35.21\%; 1391 controls, 64.79\%) were included in the analysis. Compared to those without access, patients invited to review notes were more adherent to antihypertensive medications---adherence rate 79.7\% for intervention versus 75.3\% for control group; adjusted risk ratio, 1.06 (95\% CI 1.00-1.12). Adherence was similar among patient groups taking antihyperlipidemic agents---adherence rate 77.6\% for intervention versus 77.3\% for control group; adjusted risk ratio, 1.01 (95\% CI 0.95-1.07). Conclusions: Availability of notes following PCP visits was associated with improved adherence by patients prescribed antihypertensive, but not antihyperlipidemic, medications. As the use of fully transparent records spreads, patients invited to read their clinicians' notes may modify their behaviors in clinically valuable ways. ", doi="10.2196/jmir.4872", url="http://www.jmir.org/2015/10/e226/", url="http://www.ncbi.nlm.nih.gov/pubmed/26449757" } @Article{info:doi/10.2196/resprot.4291, author="Skj{\o}th, Maria Mette and Hansen, Ploug Helle and Draborg, Eva and Pedersen, Duedal Claus and Lamont, F. Ronald and J{\o}rgensen, Stener Jan", title="Informed Choice for Participation in Down Syndrome Screening: Development and Content of a Web-Based Decision Aid", journal="JMIR Res Protoc", year="2015", month="Sep", day="21", volume="4", number="3", pages="e113", keywords="decision support intervention", keywords="decision making", keywords="informed choice", keywords="prenatal diagnosis", keywords="pregnancy", keywords="development", keywords="Web-based intervention", keywords="eHealth tool", keywords="telemedicine", abstract="Background: In Denmark, all pregnant women are offered screening in early pregnancy to estimate the risk of having a fetus with Down syndrome. Pregnant women participating in the screening program should be provided with information and support to allow them to make an informed choice. There is increasing interest in the use of Web-based technology to provide information and digital solutions for the delivery of health care. Objective: The aim of this study was to develop an eHealth tool that contained accurate and relevant information to allow pregnant women to make an informed choice about whether to accept or reject participation in screening for Down syndrome. Methods: The development of the eHealth tool involved the cooperation of researchers, technology experts, clinicians, and users. The underlying theoretical framework was based on participatory design, the International Patient Decision Aid Standards (IPDAS) Collaboration guide to develop a patient decision aid, and the roadmap for developing eHealth technologies from the Center for eHealth Research and Disease Management (CeHRes). The methods employed were a systematic literature search, focus group interviews with 3 care providers and 14 pregnant women, and 2 weeks of field observations. A qualitative descriptive approach was used in this study. Results: Relevant themes from pregnant women and care providers with respect to information about Down syndrome screening were identified. Based on formalized processes for developing patient decision aids and eHealth technologies, an interactive website containing information about Down syndrome, methods of screening, and consequences of the test was developed. The intervention was based on user requests and needs, and reflected the current hospital practice and national guidelines. Conclusions: This paper describes the development and content of an interactive website to support pregnant women in making informed choices about Down syndrome screening. To develop the website, we used a well-structured process based on scientific evidence and involved pregnant women, care providers, and technology experts as stakeholders. To our knowledge, there has been no research on the combination of IPDAS standards and the CeHRes roadmap to develop an eHealth tool to target information about screening for Down syndrome. ", doi="10.2196/resprot.4291", url="http://www.researchprotocols.org/2015/3/e113/", url="http://www.ncbi.nlm.nih.gov/pubmed/26392319" } @Article{info:doi/10.2196/jmir.4456, author="Boeldt, L. Debra and Wineinger, E. Nathan and Waalen, Jill and Gollamudi, Shreya and Grossberg, Adam and Steinhubl, R. Steven and McCollister-Slipp, Anna and Rogers, A. Marc and Silvers, Carey and Topol, J. Eric", title="How Consumers and Physicians View New Medical Technology: Comparative Survey", journal="J Med Internet Res", year="2015", month="Sep", day="14", volume="17", number="9", pages="e215", keywords="digital revolution", keywords="healthcare", keywords="medical technology", keywords="physician and consumer attitudes", keywords="electronic health record", keywords="mobile health", abstract="Background: As a result of the digital revolution coming to medicine, a number of new tools are becoming available and are starting to be introduced in clinical practice. Objective: We aim to assess health care professional and consumer attitudes toward new medical technology including smartphones, genetic testing, privacy, and patient-accessible electronic health records. Methods: We performed a survey with 1406 health care providers and 1102 consumer responders. Results: Consumers who completed the survey were more likely to prefer new technologies for a medical diagnosis (437/1102, 39.66\%) compared with providers (194/1406, 13.80\%; P<.001), with more providers (393/1406, 27.95\%) than consumers (175/1102, 15.88\%) reporting feeling uneasy about using technology for a diagnosis. Both providers and consumers supported genetic testing for various purposes, with providers (1234/1406, 87.77\%) being significantly more likely than consumers (806/1102, 73.14\%) to support genetic testing when planning to have a baby (P<.001). Similarly, 91.68\% (1289/1406) of providers and 81.22\% (895/1102) of consumers supported diagnosing problems in a fetus (P<.001). Among providers, 90.33\% (1270/1406) were concerned that patients would experience anxiety after accessing health records, and 81.95\% (1149/1406) felt it would lead to requests for unnecessary medical evaluations, but only 34.30\% (378/1102; P<.001) and 24.59\% (271/1102; P<.001) of consumers expressed the same concerns, respectively. Physicians (137/827, 16.6\%) reported less concern about the use of technology for diagnosis compared to medical students (21/235, 8.9\%; P=.03) and also more frequently felt that patients owned their medical record (323/827, 39.1\%; and 30/235, 12.8\%, respectively; P<.001). Conclusions: Consumers and health professionals differ significantly and broadly in their views of emerging medical technology, with more enthusiasm and support expressed by consumers. ", doi="10.2196/jmir.4456", url="http://www.jmir.org/2015/9/e215/", url="http://www.ncbi.nlm.nih.gov/pubmed/26369254" } @Article{info:doi/10.2196/jmir.4364, author="Chung, Chia-Fang and Cook, Jonathan and Bales, Elizabeth and Zia, Jasmine and Munson, A. Sean", title="More Than Telemonitoring: Health Provider Use and Nonuse of Life-Log Data in Irritable Bowel Syndrome and Weight Management", journal="J Med Internet Res", year="2015", month="Aug", day="21", volume="17", number="8", pages="e203", keywords="life logs", keywords="behavioral self-monitoring", keywords="clinical care", keywords="chronic disease", keywords="health", keywords="wellness", keywords="personal informatics", keywords="quantified self", abstract="Background: The quantified self, self-monitoring or life-logging movement is a trend to incorporate technology into data acquisition on aspects of a person's daily life in terms of inputs (eg food consumed), states (eg mood), and performance (mental and physical). Consumer self-monitoring mobile phone apps have been widely studied and used to promote healthy behavior changes. Data collected through life-logging apps also have the potential to support clinical care. Objective: We sought to develop an in-depth understanding of providers' facilitators and barriers to successfully integrating life-log data into their practices and creating better experiences. We specifically investigated three research questions: How do providers currently use patient-collected life-log data in clinical practice? What are provider concerns and needs with respect to this data? What are the constraints for providers to integrate this type of data into their workflows? Methods: We interviewed 21 health care providers---physicians, dietitians, a nurse practitioner, and a behavioral psychologist---who work with obese and irritable bowel syndrome patients. We transcribed and analyzed interviews according to thematic analysis and an affinity diagramming process. Results: Providers reported using self-monitoring data to enhance provider-patient communication, develop personalized treatment plans, and to motivate and educate patients, in addition to using them as diagnostic and adherence tools. However, limitations associated with current systems and workflows create barriers to regular and effective review of this data. These barriers include a lack of time to review detailed records, questions about providers' expertise to review it, and skepticism about additional benefits offered by reviewing data. Current self-monitoring tools also often lack flexibility, standardized formats, and mechanisms to share data with providers. Conclusions: Variations in provider needs affect tracking and reviewing needs. Systems to support diagnosis might require better reliability and resolution, while systems to support interaction should support collaborative reflection and communication. Automatic synthesis of data logs could help providers focus on educational goals while communication of contextual information might help providers better understand patient values. We also discuss how current mobile apps and provider systems do, and do not, support these goals, and future design opportunities to realize the potential benefits of using life-logging tools in clinical care. ", doi="10.2196/jmir.4364", url="http://www.jmir.org/2015/8/e203/", url="http://www.ncbi.nlm.nih.gov/pubmed/26297627" } @Article{info:doi/10.2196/jmir.4209, author="Ancker, S. Jessica and Witteman, O. Holly and Hafeez, Baria and Provencher, Thierry and Van de Graaf, Mary and Wei, Esther", title="``You Get Reminded You're a Sick Person'': Personal Data Tracking and Patients With Multiple Chronic Conditions", journal="J Med Internet Res", year="2015", month="Aug", day="19", volume="17", number="8", pages="e202", keywords="medical informatics", keywords="consumer health information", keywords="health knowledge, attitudes, practices", keywords="self-care", keywords="chronic disease", abstract="Background: Consumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as ``quantified self'' advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population. Objective: Our aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data? Methods: We used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached. Results: Interviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients' self-tracked data. Conclusions: Developers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered ``illness work'' connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their ``illness work'' more efficiently and effectively. ", doi="10.2196/jmir.4209", url="http://www.jmir.org/2015/8/e202/", url="http://www.ncbi.nlm.nih.gov/pubmed/26290186" } @Article{info:doi/10.2196/jmir.4312, author="Jamal, Amr and Khan, A. Samina and AlHumud, Ahmed and Al-Duhyyim, Abdulaziz and Alrashed, Mohammed and Bin Shabr, Faisal and Alteraif, Alwalid and Almuziri, Abdullah and Househ, Mowafa and Qureshi, Riaz", title="Association of Online Health Information--Seeking Behavior and Self-Care Activities Among Type 2 Diabetic Patients in Saudi Arabia", journal="J Med Internet Res", year="2015", month="Aug", day="12", volume="17", number="8", pages="e196", keywords="Internet", keywords="diabetes mellitus, type 2", keywords="self-care", keywords="consumer health information", keywords="telemedicine", keywords="medical informatics", keywords="health education", keywords="Google", keywords="eHealth", keywords="e-patients", keywords="health behavior", keywords="Middle East", keywords="Saudi Arabia", abstract="Background: Health information obtained from the Internet has an impact on patient health care outcomes. There is a growing concern over the quality of online health information sources used by diabetic patients because little is known about their health information--seeking behavior and the impact this behavior has on their diabetes-related self-care, in particular in the Middle East setting. Objective: The aim of this study was to determine the online health-related information--seeking behavior among adult type 2 diabetic patients in the Middle East and the impact of their online health-related information--seeking behavior on their self-care activities. Methods: A cross-sectional survey was conducted on 344 patients with type 2 diabetes attending inpatient and outpatient primary health care clinics at 2 teaching hospitals in Riyadh, Saudi Arabia. The main outcome measures included the ability of patients to access the Internet, their ability to use the Internet to search for health-related information, and their responses to Internet searches in relation to their self-care activities. Further analysis of differences based on age, gender, sociodemographic, and diabetes-related self-care activities among online health-related information seekers and nononline health-related information seekers was conducted. Results: Among the 344 patients, 74.1\% (255/344) were male with a mean age of 53.5 (SD 13.8) years. Only 39.0\% (134/344) were Internet users; 71.6\% (96/134) of them used the Internet for seeking health-related information. Most participants reported that their primary source of health-related information was their physician (216/344, 62.8\%) followed by television (155/344, 45.1\%), family (113/344, 32.8\%), newspapers (100/344, 29.1\%), and the Internet (96/344, 27.9\%). Primary topics participants searched for were therapeutic diet for diabetes (55/96, 57\%) and symptoms of diabetes (52/96, 54\%) followed by diabetes treatment (50/96, 52\%). Long history of diabetes, familial history of the disease, unemployment, and not seeking diabetes education were the most common barriers for online health-related information--seeking behavior. Younger age, female, marital status, higher education, higher income, and longer duration of Internet usage were associated with more online health-related information--seeking behaviors. Most (89/96, 93\%) online health-related information seekers reported positive change in their behaviors after seeking online health information. Overall odds ratio (OR 1.56, 95\% CI 0.63-3.28) for all self-care responses demonstrated that there was no statistically significant difference between those seeking health-related information online and non--health-related information seekers. However, health-related information seekers were better in testing their blood glucose regularly, taking proper action for hyperglycemia, and adopting nonpharmacological management. Conclusions: Physicians and television are still the primary sources of health-related information for adult diabetic patients in Saudi Arabia whether they seek health-related information online or not. This study demonstrates that participants seeking online health-related information are more conscious about their diabetes self-care compared to non--health-related information seekers in some aspects more than the others. ", doi="10.2196/jmir.4312", url="http://www.jmir.org/2015/8/e196/", url="http://www.ncbi.nlm.nih.gov/pubmed/26268425" } @Article{info:doi/10.2196/jmir.3945, author="Perez, L. Susan and Paterniti, A. Debora and Wilson, Machelle and Bell, A. Robert and Chan, Shan Man and Villareal, C. Chloe and Nguyen, Huy Hien and Kravitz, L. Richard", title="Characterizing the Processes for Navigating Internet Health Information Using Real-Time Observations: A Mixed-Methods Approach", journal="J Med Internet Res", year="2015", month="Jul", day="20", volume="17", number="7", pages="e173", keywords="dual processing", keywords="information seeking", keywords="Internet search", keywords="health information", abstract="Background: Little is known about the processes people use to find health-related information on the Internet or the individual characteristics that shape selection of information-seeking approaches. Objective: Our aim was to describe the processes by which users navigate the Internet for information about a hypothetical acute illness and to identify individual characteristics predictive of their information-seeking strategies. Methods: Study participants were recruited from public settings and agencies. Interested individuals were screened for eligibility using an online questionnaire. Participants listened to one of two clinical scenarios---consistent with influenza or bacterial meningitis---and then conducted an Internet search. Screen-capture video software captured Internet search mouse clicks and keystrokes. Each step of the search was coded as hypothesis testing (etiology), evidence gathering (symptoms), or action/treatment seeking (behavior). The coded steps were used to form a step-by-step pattern of each participant's information-seeking process. A total of 78 Internet health information seekers ranging from 21-35 years of age and who experienced barriers to accessing health care services participated. Results: We identified 27 unique patterns of information seeking, which were grouped into four overarching classifications based on the number of steps taken during the search, whether a pattern consisted of developing a hypothesis and exploring symptoms before ending the search or searching an action/treatment, and whether a pattern ended with action/treatment seeking. Applying dual-processing theory, we categorized the four overarching pattern classifications as either System 1 (41\%, 32/78), unconscious, rapid, automatic, and high capacity processing; or System 2 (59\%, 46/78), conscious, slow, and deliberative processing. Using multivariate regression, we found that System 2 processing was associated with higher education and younger age. Conclusions: We identified and classified two approaches to processing Internet health information. System 2 processing, a methodical approach, most resembles the strategies for information processing that have been found in other studies to be associated with higher-quality decisions. We conclude that the quality of Internet health-information seeking could be improved through consumer education on methodical Internet navigation strategies and the incorporation of decision aids into health information websites. ", doi="10.2196/jmir.3945", url="http://www.jmir.org/2015/7/e173/", url="http://www.ncbi.nlm.nih.gov/pubmed/26194787" } @Article{info:doi/10.2196/jmir.4103, author="Koschack, Janka and Weibezahl, Lara and Friede, Tim and Himmel, Wolfgang and Makedonski, Philip and Grabowski, Jens", title="Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum", journal="J Med Internet Res", year="2015", month="Jul", day="01", volume="17", number="7", pages="e159", keywords="multiple sclerosis", keywords="venous insufficiency", keywords="Internet", keywords="social media", keywords="cognitive dissonance", keywords="qualitative research", abstract="Background: The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was immediately rejected by experts but enthusiastically gripped by patients who shared their experiences with other patients worldwide by use of social media, such as patient online forums. Contradictions between scientific information and lay experiences may be a source of distress for MS patients, but we do not know how patients perceive and deal with these contradictions. Objective: We aimed to understand whether scientific and experiential knowledge were experienced as contradictory in MS patient online forums and, if so, how these contradictions were resolved and how patients tried to reconcile the CCSVI debate with their own illness history and experience. Methods: By using critical discourse analysis, we studied CCSVI-related posts in the patient online forum of the German MS Society in a chronological order from the first post mentioning CCSVI to the time point when saturation was reached. For that time period, a total of 117 CCSVI-related threads containing 1907 posts were identified. We analyzed the interaction and communication practices of and between individuals, looked for the relation between concrete subtopics to identify more abstract discourse strands, and tried to reveal discourse positions explaining how users took part in the CCSVI discussion. Results: There was an emotionally charged debate about CCSVI which could be generalized to 2 discourse strands: (1) the ``downfall of the professional knowledge providers'' and (2) the ``rise of the nonprofessional treasure trove of experience.'' The discourse strands indicated that the discussion moved away from the question whether scientific or experiential knowledge had more evidentiary value. Rather, the question whom to trust (ie, scientists, fellow sufferers, or no one at all) was of fundamental significance. Four discourse positions could be identified by arranging them into the dimensions ``trust in evidence-based knowledge,'' ``trust in experience-based knowledge,'' and ``subjectivity'' (ie, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement). Conclusions: By critical discourse analysis of the CCSVI discussion in a patient online forum, we reconstruct a lay discourse about the evidentiary value of knowledge. We detected evidence criteria in this lay discourse that are different from those in the expert discourse. But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a na{\"i}ve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information. ", doi="10.2196/jmir.4103", url="http://www.jmir.org/2015/7/e159/", url="http://www.ncbi.nlm.nih.gov/pubmed/26133525" } @Article{info:doi/10.2196/jmir.4446, author="Jilka, Ramesh Sagar and Callahan, Ryan and Sevdalis, Nick and Mayer, K. Erik and Darzi, Ara", title="``Nothing About Me Without Me'': An Interpretative Review of Patient Accessible Electronic Health Records", journal="J Med Internet Res", year="2015", month="Jun", day="29", volume="17", number="6", pages="e161", keywords="patient accessible electronic health records", keywords="online record access", abstract="Background: Patient accessible electronic health records (PAEHRs) enable patients to access and manage personal clinical information that is made available to them by their health care providers (HCPs). It is thought that the shared management nature of medical record access improves patient outcomes and improves patient satisfaction. However, recent reviews have found that this is not the case. Furthermore, little research has focused on PAEHRs from the HCP viewpoint. HCPs include physicians, nurses, and service providers. Objective: We provide a systematic review of reviews of the impact of giving patients record access from both a patient and HCP point of view. The review covers a broad range of outcome measures, including patient safety, patient satisfaction, privacy and security, self-efficacy, and health outcome. Methods: A systematic search was conducted using Web of Science to identify review articles on the impact of PAEHRs. Our search was limited to English-language reviews published between January 2002 and November 2014. A total of 73 citations were retrieved from a series of Boolean search terms including ``review*'' with ``patient access to records''. These reviews went through a novel scoring system analysis whereby we calculated how many positive outcomes were reported per every outcome measure investigated. This provided a way to quantify the impact of PAEHRs. Results: Ten reviews covering chronic patients (eg, diabetes and hypertension) and primary care patients, as well as HCPs were found but eight were included for the analysis of outcome measures. We found mixed outcomes across both patient and HCP groups, with approximately half of the reviews showing positive changes with record access. Patients believe that record access increases their perception of control; however, outcome measures thought to create psychological concerns (such as patient anxiety as a result of seeing their medical record) are still unanswered. Nurses are more likely than physicians to gain time efficiencies by using a PAEHR system with the main concern from physicians being the security of the PAEHRs. Conclusions: This review implements a novel scoring system, which shows there is a lack of rigorous empirical testing that separates the effect of record access from other existing disease management programs. Current research is too targeted within certain clinical groups' needs, and although there are positive signs for the adoption of PAEHRs, there is currently insufficient evidence about the effect of PAEHRs on health outcomes for patients or HCPs. ", doi="10.2196/jmir.4446", url="http://www.jmir.org/2015/6/e161/", url="http://www.ncbi.nlm.nih.gov/pubmed/26123476" } @Article{info:doi/10.2196/jmir.4255, author="Irizarry, Taya and DeVito Dabbs, Annette and Curran, R. Christine", title="Patient Portals and Patient Engagement: A State of the Science Review", journal="J Med Internet Res", year="2015", month="Jun", day="23", volume="17", number="6", pages="e148", keywords="electronic personal health record", keywords="patient portal", keywords="patient engagement", keywords="meaningful use", abstract="Background: Patient portals (ie, electronic personal health records tethered to institutional electronic health records) are recognized as a promising mechanism to support greater patient engagement, yet questions remain about how health care leaders, policy makers, and designers can encourage adoption of patient portals and what factors might contribute to sustained utilization. Objective: The purposes of this state of the science review are to (1) present the definition, background, and how current literature addresses the encouragement and support of patient engagement through the patient portal, and (2) provide a summary of future directions for patient portal research and development to meaningfully impact patient engagement. Methods: We reviewed literature from 2006 through 2014 in PubMed, Ovid Medline, and PsycInfo using the search terms ``patient portal'' OR ``personal health record'' OR ``electronic personal health record''. Final inclusion criterion dictated that studies report on the patient experience and/or ways that patients may be supported to make competent health care decisions and act on those decisions using patient portal functionality. Results: We found 120 studies that met the inclusion criteria. Based on the research questions, explicit and implicit aims of the studies, and related measures addressed, the studies were grouped into five major topics (patient adoption, provider endorsement, health literacy, usability, and utility). We discuss the findings and conclusions of studies that address the five topical areas. Conclusions: Current research has demonstrated that patients' interest and ability to use patient portals is strongly influenced by personal factors such age, ethnicity, education level, health literacy, health status, and role as a caregiver. Health care delivery factors, mainly provider endorsement and patient portal usability also contribute to patient's ability to engage through and with the patient portal. Future directions of research should focus on identifying specific populations and contextual considerations that would benefit most from a greater degree of patient engagement through a patient portal. Ultimately, adoption by patients and endorsement by providers will come when existing patient portal features align with patients' and providers' information needs and functionality. ", doi="10.2196/jmir.4255", url="http://www.jmir.org/2015/6/e148/", url="http://www.ncbi.nlm.nih.gov/pubmed/26104044" } @Article{info:doi/10.2196/jmir.3801, author="Gidwani, Risha and Zulman, Donna", title="Association Between Acute Medical Exacerbations and Consuming or Producing Web-Based Health Information: Analysis From Pew Survey Data", journal="J Med Internet Res", year="2015", month="Jun", day="23", volume="17", number="6", pages="e145", keywords="Internet", keywords="health knowledge, attitudes, practice", keywords="emergencies", keywords="hospitalization", abstract="Background: The Internet is an increasingly important resource for individuals who seek information from both health professionals and peers. While the demographic and health characteristics of persons who use health information technology has been well described, less is known about the relationship between these health characteristics and level of engagement with health information technology. Even less is known about whether persons who produce Web-based health information differ in health status from persons who consume such content. Objective: We explored the health characteristics of persons who engage with the Internet for the purposes of consuming or producing Web-based health information, and specifically, whether healthier versus sicker persons engage with health information technology in different ways. Methods: We analyzed data from the 2012 Pew Health survey, a landline and cell phone survey of 3104 adults in the United States. Using multiple logistic regression with sampling weights, we examined the association between sociodemographic and health characteristics and the consumption or production of Web-based health information. Sociodemographic variables included age, sex, race, and education. Health characteristics included self-reported health status, presence of chronic condition(s), and having an acute medical exacerbation. Acute medical exacerbations were defined as an emergency department visit, hospitalization, or other serious medical emergency in the last 12 months. Results: The majority of the sample reported good or excellent health (79.7\%), although 50.3\% reported having at least one chronic condition. About a fifth (20.2\%) of the sample experienced an acute medical exacerbation in the past year. Education was the sociodemographic characteristic most strongly associated with consuming Web-based health information. The strongest health-related predictors of consuming Web-based health information were an acute medical exacerbation (OR 2.39, P<.001) and having a chronic condition (OR 1.54, P=.007). Having an acute medical exacerbation was the only predictor of producing Web-based health information (OR 1.97, P=.003). All participants, regardless of health status, were most interested in Web-based health information regarding diseases or medical problems. However, persons with acute medical exacerbations were more likely to seek Web-based health information regarding medical tests, procedures, and drugs compared to persons without acute medical exacerbations. Conclusions: Producers of Web-based health information differ from consumers of this information in important health characteristics that could skew the content of peer-generated Web-based health information and overrepresent the experiences of persons with acute medical exacerbations. Providers may have a role to play in directing patients towards high-quality, easy-to-understand online information, especially information regarding treatments and procedures. ", doi="10.2196/jmir.3801", url="http://www.jmir.org/2015/6/e145/" } @Article{info:doi/10.2196/jmir.4127, author="Bidmon, Sonja and Terlutter, Ralf", title="Gender Differences in Searching for Health Information on the Internet and the Virtual Patient-Physician Relationship in Germany: Exploratory Results on How Men and Women Differ and Why", journal="J Med Internet Res", year="2015", month="Jun", day="22", volume="17", number="6", pages="e156", keywords="gender differences", keywords="physician-patient relations", keywords="information seeking behavior", keywords="general practitioners", keywords="statistical factor analysis", abstract="Background: Many studies have shown that women use the Internet more often for health-related information searches than men, but we have limited knowledge about the underlying reasons. We also do not know whether and how women and men differ in their current use of the Internet for communicating with their general practitioner (GP) and in their future intention to do so (virtual patient-physician relationship). Objective: This study investigates (1) gender differences in health-related information search behavior by exploring underlying emotional, motivational, attitudinal as well as cognitive variables, situational involvement, and normative influences, and different personal involvement regarding health-related information searching and (2) gender differences in the virtual patient-physician relationship. Methods: Gender differences were analyzed based on an empirical online survey of 1006 randomly selected German patients. The sample was drawn from an e-panel maintained by GfK HealthCare. A total of 958 usable questionnaires were analyzed. Principal component analyses were carried out for some variables. Differences between men (517/958) and women (441/958) were analyzed using t tests and Kendall's tau-b tests. The survey instrument was guided by several research questions and was based on existing literature. Results: Women were more engaged in using the Internet for health-related information searching. Gender differences were found for the frequency of usage of various Internet channels for health-related information searches. Women used the Internet for health-related information searches to a higher degree for social motives and enjoyment and they judged the usability of the Internet medium and of the information gained by health information searches higher than men did. Women had a more positive attitude toward Web 2.0 than men did, but perceived themselves as less digitally competent. Women had a higher health and nutrition awareness and a greater reluctance to make use of medical support, as well as a higher personal disposition of being well-informed as a patient. Men may be more open toward the virtual patient-physician relationship. Conclusions: Women have a stronger social motive for and experience greater enjoyment in health-related information searches, explained by social role interpretations, suggesting these needs should be met when offering health-related information on the Internet. This may be interesting for governmental bodies as well as for the insurance and the pharmaceutical industries. Furthermore, women may be more easily convinced by health awareness campaigns and are, therefore, the primary target group for them. Men are more open to engaging in a virtual relationship with the GP; therefore, they could be the primary target group for additional online services offered by GPs. There were several areas for GPs to reinforce the virtual patient-physician relationship: the fixing of personal appointments, referral to other doctors, writing prescriptions, and discussions of normal test results and doctor's notes/certificates of health. ", doi="10.2196/jmir.4127", url="http://www.jmir.org/2015/6/e156/", url="http://www.ncbi.nlm.nih.gov/pubmed/26099325" } @Article{info:doi/10.2196/ijmr.3790, author="Pehora, Carolyne and Gajaria, Nisha and Stoute, Melyssa and Fracassa, Sonia and Serebale-O'Sullivan, Refilwe and Matava, T. Clyde", title="Are Parents Getting it Right? A Survey of Parents' Internet Use for Children's Health Care Information", journal="Interact J Med Res", year="2015", month="Jun", day="22", volume="4", number="2", pages="e12", keywords="Internet", keywords="pediatrics", keywords="health information technology", abstract="Background: The use of the Internet to search for medical and health-related information is increasing and associated with concerns around quality and safety. Objective: We investigated the current use and perceptions on reliable websites for children's health information by parents. Methods: Following institutional ethics approval, we conducted a survey of parents/guardians of children presenting for day surgery. A 20-item survey instrument developed and tested by the investigators was administered. Results: Ninety-eight percent of respondents reported that they used the Internet to search for information about their child's health. Many respondents reported beginning their search at public search engines (80\%); less than 20\% reported starting their search at university/hospital-based websites. Common conditions such as colds/flu, skin conditions and fever were the most frequently searched, and unique conditions directly affecting the child were second. Despite low usage levels of university/hospital-based websites for health information, the majority of respondents (74\%) regarded these as providing safe, accurate, and reliable information. In contrast, only 24\% of respondents regarded public search engines as providing safe and reliable information. Fifty percent of respondents reported that they cross-checked information found on the internet with a family physician. Conclusions: An unprecedented majority of parents and guardians are using the Internet for their child's health information. Of concern is that parents and guardians are currently not using reliable and safe sources of information. Health care providers should begin to focus on improving access to safe, accurate, and reliable information through various modalities including education, designing for multiplatform, and better search engine optimization. ", doi="10.2196/ijmr.3790", url="http://www.i-jmr.org/2015/2/e12/", url="http://www.ncbi.nlm.nih.gov/pubmed/26099207" } @Article{info:doi/10.2196/jmir.3792, author="Townsend, Anne and Leese, Jenny and Adam, Paul and McDonald, Michael and Li, C. Linda and Kerr, Sheila and Backman, L. Catherine", title="eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients' and Health Care Providers' Use of Health-Related Internet Information", journal="J Med Internet Res", year="2015", month="Jun", day="22", volume="17", number="6", pages="e155", keywords="relational ethics", keywords="health-related Internet information", keywords="arthritis", keywords="patient-HCP relationship", keywords="e-health", keywords="chronic illness", keywords="qualitative", abstract="Background: The rapid explosion in online digital health resources is seen as transformational, accelerating the shift from traditionally passive patients to patients as partners and altering the patient--health care professional (HCP) relationship. Patients with chronic conditions are increasingly engaged, enabled, and empowered to be partners in their care and encouraged to take responsibility for managing their conditions with HCP support. Objective: In this paper, we focus on patients' and HCPs' use of health-related Internet information and how it influences the patient-HCP relationship. In particular, we examine the challenges emerging in medical encounters as roles and relationships shift and apply a conceptual framework of relational ethics to examine explicit and nuanced ethical dimensions emerging in patient-HCP interactions as both parties make increased use of health-related Internet information. Methods: We purposively sampled patients and HCPs in British Columbia, Canada, to participate in focus groups. To be eligible, patients self-reported a diagnosis of arthritis and at least one other chronic health condition; HCPs reported a caseload with >25\% of patients with arthritis and multimorbidity. We used a semistructured, but flexible, discussion guide. All discussions were audiotaped and transcribed verbatim. Elements of grounded theory guided our constant comparison thematic analytic approach. Analysis was iterative. A relational ethics conceptual lens was applied to the data. Results: We recruited 32 participants (18 patients, 14 HCPs). They attended seven focus groups: four with patients and three with rehabilitation professionals and physicians. Predominant themes to emerge were how use of health-related Internet information fostered (1) changing roles, (2) patient-HCP partnerships, and (3) tensions and burdens for patients and HCPs. Conclusions: Relational aspects such as mutual trust, uncertainty, and vulnerability are illuminated in patient-HCP interactions around health-related Internet information and the negotiated space of clinical encounters. New roles and associated responsibilities have key ethical dimensions that make clear the changes are fundamental and important to understand in ethical care. When faced with tensions and burdens around incorporating health-related Internet information as a resource in clinical encounters, participants described a particular ambivalence illustrating the fundamental changes being negotiated by both patients and HCPs. ", doi="10.2196/jmir.3792", url="http://www.jmir.org/2015/6/e155/", url="http://www.ncbi.nlm.nih.gov/pubmed/26099267" } @Article{info:doi/10.2196/jmir.4333, author="Laugesen, John and Hassanein, Khaled and Yuan, Yufei", title="The Impact of Internet Health Information on Patient Compliance: A Research Model and an Empirical Study", journal="J Med Internet Res", year="2015", month="Jun", day="11", volume="17", number="6", pages="e143", keywords="Internet health information", keywords="information asymmetry", keywords="patient compliance", keywords="patient-physician concordance", keywords="physician quality", keywords="consumer health", abstract="Background: Patients have been increasingly seeking and using Internet health information to become more active in managing their own health in a partnership with their physicians. This trend has both positive and negative effects on the interactions between patients and their physicians. Therefore, it is important to understand the impact that the increasing use of Internet health information has on the patient-physician relationship and patients' compliance with their treatment regimens. Objective: This study examines the impact of patients' use of Internet health information on various elements that characterize the interactions between a patient and her/his physician through a theoretical model based on principal-agent theory and the information asymmetry perspective. Methods: A survey-based study consisting of 225 participants was used to validate a model through various statistical techniques. A full assessment of the measurement model and structural model was completed in addition to relevant post hoc analyses. Results: This research revealed that both patient-physician concordance and perceived information asymmetry have significant effects on patient compliance, with patient-physician concordance exhibiting a considerably stronger relationship. Additionally, both physician quality and Internet health information quality have significant effects on patient-physician concordance, with physician quality exhibiting a much stronger relationship. Finally, only physician quality was found to have a significant impact on perceived information asymmetry, whereas Internet health information quality had no impact on perceived information asymmetry. Conclusions: Overall, this study found that physicians can relax regarding their fears concerning patient use of Internet health information because physician quality has the greatest impact on patients and their physician coming to an agreement on their medical situation and recommended treatment regimen as well as patient's compliance with their physician's advice when compared to the impact that Internet health information quality has on these same variables. The findings also indicate that agreement between the patient and physician on the medical situation and treatment is much more important to compliance than the perceived information gap between the patient and physician (ie, the physician having a higher level of information in comparison to the patient). In addition, the level of agreement between a patient and their physician regarding the medical situation is more reliant on the perceived quality of their physician than on the perceived quality of Internet health information used. This research found that only the perceived quality of the physician has a significant relationship with the perceived information gap between the patient and their physician and the quality of the Internet health information has no relationship with this perceived information gap. ", doi="10.2196/jmir.4333", url="http://www.jmir.org/2015/6/e143/", url="http://www.ncbi.nlm.nih.gov/pubmed/26068214" } @Article{info:doi/10.2196/jmir.4381, author="Ancker, S. Jessica and Witteman, O. Holly and Hafeez, Baria and Provencher, Thierry and Van de Graaf, Mary and Wei, Esther", title="The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers", journal="J Med Internet Res", year="2015", month="Jun", day="04", volume="17", number="6", pages="e137", keywords="consumer health information technology", keywords="electronic medical records", keywords="electronic patient portals", keywords="personal health records (PHRs)", keywords="chronic disease", keywords="qualitative research", keywords="diabetes", keywords="information management", abstract="Background: A critical problem for patients with chronic conditions who see multiple health care providers is incomplete or inaccurate information, which can contribute to lack of care coordination, low quality of care, and medical errors. Objective: As part of a larger project on applications of consumer health information technology (HIT) and barriers to its use, we conducted a semistructured interview study with patients with multiple chronic conditions (MCC) with the objective of exploring their role in managing their personal health information. Methods: Semistructured interviews were conducted with patients and providers. Patients were eligible if they had multiple chronic conditions and were in regular care with one of two medical organizations in New York City; health care providers were eligible if they had experience caring for patients with multiple chronic conditions. Analysis was conducted from a grounded theory perspective, and recruitment was concluded when saturation was achieved. Results: A total of 22 patients and 7 providers were interviewed; patients had an average of 3.5 (SD 1.5) chronic conditions and reported having regular relationships with an average of 5 providers. Four major themes arose: (1) Responsibility for managing medical information: some patients perceived information management and sharing as the responsibility of health care providers; others---particularly those who had had bad experiences in the past---took primary responsibility for information sharing; (2) What information should be shared: although privacy concerns did influence some patients' perceptions of sharing of medical data, decisions about what to share were also heavily influenced by their understanding of health and disease and by the degree to which they understood the health care system; (3) Methods and tools varied: those patients who did take an active role in managing their records used a variety of electronic tools, paper tools, and memory; and (4) Information management as invisible work: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment. Conclusions: We conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC. ", doi="10.2196/jmir.4381", url="http://www.jmir.org/2015/6/e137/", url="http://www.ncbi.nlm.nih.gov/pubmed/26043709" } @Article{info:doi/10.2196/jmir.3652, author="Hall, Kelly Leslie and Kunz, F. Breanne and Davis, V. Elizabeth and Dawson, I. Rose and Powers, S. Ryan", title="The Cancer Experience Map: An Approach to Including the Patient Voice in Supportive Care Solutions", journal="J Med Internet Res", year="2015", month="May", day="28", volume="17", number="5", pages="e132", keywords="mHealth", keywords="patient participation", keywords="neoplasm", keywords="public policy", keywords="Internet intervention", keywords="cancer survivors", keywords="online interventions", doi="10.2196/jmir.3652", url="http://www.jmir.org/2015/5/e132/", url="http://www.ncbi.nlm.nih.gov/pubmed/26022846" } @Article{info:doi/10.2196/jmir.4332, author="Moin, Tannaz and Ertl, Kristyn and Schneider, Jessica and Vasti, Elena and Makki, Fatima and Richardson, Caroline and Havens, Kathryn and Damschroder, Laura", title="Women Veterans' Experience With a Web-Based Diabetes Prevention Program: A Qualitative Study to Inform Future Practice", journal="J Med Internet Res", year="2015", month="May", day="25", volume="17", number="5", pages="e127", keywords="prediabetic state", keywords="disease management", keywords="risk reduction behavior", keywords="program evaluation", keywords="patient satisfaction", keywords="attitude to computers", keywords="computers", keywords="Internet", abstract="Background: Diabetes prevention is a national goal and particularly important in the Veterans Health Administration (VHA) where 1 in 4 veterans has diabetes. There is growing evidence to support the use of Web-based diabetes prevention program (DPP) interventions, shown to be as effective and often more feasible than in-person interventions. Objective: Our primary objective was to qualitatively explore women veterans' early experiences with a Web-based DPP intervention. Our secondary objective was to estimate weight loss, participation, and engagement to provide context for our qualitative findings. Methods: We conducted and analyzed semistructured interviews and collected data on weight change, participation, and engagement. A total of 17 women veterans with prediabetes from a Midwest VA Women's Health Clinic were eligible to participate; 15 completed interviews. Results: Participants perceived the DPP program as an appealing way of initiating lifestyle changes and made them feel accountable in achieving their daily goals. The online program was convenient because it could be accessed at any time, and many found that it integrated well into daily life. However, some did not like the logging aspect and some found it to be too impersonal. Participants logged in a mean 76 times, posted a mean 46 group messages, and sent a mean 20.5 private messages to the health coach over 16 weeks. Participants lost 5.24\% of baseline weight, and 82\% (14/17) of participants completed at least 9 of 16 core modules. Conclusions: Women veterans' early experiences with a Web-based DPP intervention were generally positive. Accountability and convenience were key enabling factors for participation and engagement. A Web-based DPP intervention appears to be a promising means of translating the DPP for women veterans with prediabetes. ", doi="10.2196/jmir.4332", url="http://www.jmir.org/2015/5/e127/", url="http://www.ncbi.nlm.nih.gov/pubmed/26006697" } @Article{info:doi/10.2196/jmir.4048, author="Rowlands, Jean Ingrid and Loxton, Deborah and Dobson, Annette and Mishra, Devi Gita", title="Seeking Health Information Online: Association With Young Australian Women's Physical, Mental, and Reproductive Health", journal="J Med Internet Res", year="2015", month="May", day="18", volume="17", number="5", pages="e120", keywords="Internet", keywords="women's health", keywords="young adults", keywords="health status", keywords="mental health", keywords="information seeking behavior", abstract="Background: Relatively little is known about the extent to which young adults use the Internet as a health information resource and whether there are factors that distinguish between those who do and do not go online for health information. Objective: The aim was to identify the sociodemographic, physical, mental, and reproductive health factors associated with young women's use of the Internet for health information. Methods: We used data from 17,069 young women aged 18-23 years who participated in the Australian Longitudinal Study on Women's Health. Multivariable logistic regression was used to estimate the association between sociodemographic, physical, mental, and reproductive health factors associated with searching the Internet for health information. Results: Overall, 43.54\% (7433/17,069) of women used the Internet for health information. Women who used the Internet had higher odds of regular urinary or bowel symptoms (OR 1.44, 95\% CI 1.36-1.54), psychological distress (very high distress: OR 1.24, 95\% CI 1.13-1.37), self-reported mental health diagnoses (OR 1.16, 95\% CI 1.09-1.23), and menstrual symptoms (OR 1.25, 95\% CI 1.15-1.36) than women who did not use the Internet for health information. Internet users were less likely to have had blood pressure checks (OR 0.85, 95\% CI 0.78-0.93) and skin cancer checks (OR 0.90, 95\% CI 0.84-0.97) and to have had a live birth (OR 0.74, 95\% CI 0.64-0.86) or pregnancy loss (OR 0.88, 95\% CI 0.79-0.98) than non-Internet users. Conclusions: Women experiencing ``stigmatized'' conditions or symptoms were more likely to search the Internet for health information. The Internet may be an acceptable resource that offers ``anonymized'' information or support to young women and this has important implications for health service providers and public health policy. ", doi="10.2196/jmir.4048", url="http://www.jmir.org/2015/5/e120/", url="http://www.ncbi.nlm.nih.gov/pubmed/25986630" } @Article{info:doi/10.2196/jmir.3943, author="Jones, B. Ray and Ashurst, J. Emily and Atkey, Jo and Duffy, Barbara", title="Older People Going Online: Its Value and Before-After Evaluation of Volunteer Support", journal="J Med Internet Res", year="2015", month="May", day="18", volume="17", number="5", pages="e122", keywords="digital inclusion", keywords="health informatics", keywords="social return on investment", keywords="older people", abstract="Background: Although Internet usage can benefit older people by reducing social isolation, increasing access to services, and improving health and well-being, only a minority are online. Barriers to Internet uptake include attitude and a lack of knowledge and help. We have evaluated volunteer support in helping older people go online. Knowing what value the Internet has been to older people who have just gone online should guide how it is ``sold'' to those remaining offline. Objective: Objectives of this study are (1) to assess the feasibility of recruiting volunteers aged 50 years and older and supporting them in helping people (ie, beneficiaries) aged 65 years and older go online, (2) to assess the impact of beneficiaries using the Internet on contacts with others, loneliness, and mental health, and (3) to assess the perceived value to beneficiaries of going online. Methods: Beneficiaries received help in using the Internet from 32 volunteers in one of two ways: (1) one-on-one in their own homes, receiving an average of 12 hours of help over eight visits, or (2) in small group sessions, receiving 12 hours of help over six visits. We assessed, at registration and follow-up, the number of contacts with others, using Lubben's 6-item Lubben Social Network Scale (LBNS-6), loneliness, using De Jong Gierveld's 6-item De Jong Gierveld loneliness scale (DJG-6), and mental well-being, using Tennant's Short Warwick-Edinburgh Mental Well-Being Scale (SWEMWBS). We also assessed how beneficiaries valued going online using a Social Return on Investment (SROI) approach by postal survey. Results: A total of 144 beneficiaries were recruited with the aim of helping them go online via one-on-one (n=58) or small group (n=86) sessions. Data through to follow-up were available on 76.4\% (110/144) of participants. From baseline to follow-up, the number of contacts with others was significantly increased---LBNS-6, mean 13.7 to mean 17.6---loneliness scores were reduced---DJG-6, mean 2.38 to mean 1.80---and mental well-being improved---SWEMWBS, mean 24.06 to mean 24.96. Out of six options, beneficiaries valued better communication with family and friends most and better health care least as a benefit of using the Internet. Out of nine options, having the Internet was valued less than having TV, but more than, for example, having a weekly visit from a cleaner. There were no associations between values placed on Internet use or volunteer help and psychological improvements. Conclusions: Volunteer help to go online seemed to result in increased social contacts, reduced loneliness, and improved mental well-being and was valued quite highly by beneficiaries. Although the use of the Internet for health care was the least valued, improved social contact can improve health. Contacting family is likely to be the best ``selling point'' of the Internet for older people. ", doi="10.2196/jmir.3943", url="http://www.jmir.org/2015/5/e122/", url="http://www.ncbi.nlm.nih.gov/pubmed/25986724" } @Article{info:doi/10.2196/jmir.3637, author="Bardach, S. Naomi and Hibbard, H. Judith and Greaves, Felix and Dudley, Adams R.", title="Sources of Traffic and Visitors' Preferences Regarding Online Public Reports of Quality: Web Analytics and Online Survey Results", journal="J Med Internet Res", year="2015", month="May", day="01", volume="17", number="5", pages="e102", keywords="consumer health information", keywords="Internet/statistics and numerical data", keywords="search engine", keywords="quality of health care", keywords="consumer behavior", abstract="Background: In the context of the Affordable Care Act, there is extensive emphasis on making provider quality transparent and publicly available. Online public reports of quality exist, but little is known about how visitors find reports or about their purpose in visiting. Objective: To address this gap, we gathered website analytics data from a national group of online public reports of hospital or physician quality and surveyed real-time visitors to those websites. Methods: Websites were recruited from a national group of online public reports of hospital or physician quality. Analytics data were gathered from each website: number of unique visitors, method of arrival for each unique visitor, and search terms resulting in visits. Depending on the website, a survey invitation was launched for unique visitors on landing pages or on pages with quality information. Survey topics included type of respondent (eg, consumer, health care professional), purpose of visit, areas of interest, website experience, and demographics. Results: There were 116,657 unique visitors to the 18 participating websites (1440 unique visitors/month per website), with most unique visitors arriving through search (63.95\%, 74,606/116,657). Websites with a higher percent of traffic from search engines garnered more unique visitors (P=.001). The most common search terms were for individual hospitals (23.25\%, 27,122/74,606) and website names (19.43\%, 22,672/74,606); medical condition terms were uncommon (0.81\%, 605/74,606). Survey view rate was 42.48\% (49,560/116,657 invited) resulting in 1755 respondents (participation rate=3.6\%). There were substantial proportions of consumer (48.43\%, 850/1755) and health care professional respondents (31.39\%, 551/1755). Across websites, proportions of consumer (21\%-71\%) and health care professional respondents (16\%-48\%) varied. Consumers were frequently interested in using the information to choose providers or assess the quality of their provider (52.7\%, 225/427); the majority of those choosing a provider reported that they had used the information to do so (78\%, 40/51). Health care professional (26.6\%, 115/443) and consumer (20.8\%, 92/442) respondents wanted cost information and consumers wanted patient narrative comments (31.5\%, 139/442) on the public reports. Health care professional respondents rated the experience on the reports higher than consumers did (mean 7.2, SD 2.2 vs mean 6.2, SD 2.7; scale 0-10; P<.001). Conclusions: Report sponsors interested in increasing the influence of their reports could consider using techniques to improve search engine traffic, providing cost information and patient comments, and improving the website experience for both consumers and health care professionals. ", doi="10.2196/jmir.3637", url="http://www.jmir.org/2015/5/e102/", url="http://www.ncbi.nlm.nih.gov/pubmed/25934100" } @Article{info:doi/10.2196/jmir.4126, author="Amante, J. Daniel and Hogan, P. Timothy and Pagoto, L. Sherry and English, M. Thomas and Lapane, L. Kate", title="Access to Care and Use of the Internet to Search for Health Information: Results From the US National Health Interview Survey", journal="J Med Internet Res", year="2015", month="Apr", day="29", volume="17", number="4", pages="e106", keywords="health services accessibility", keywords="health information technology", keywords="information-seeking behavior", keywords="Patient Protection and Affordable Care Act", abstract="Background: The insurance mandate of the Affordable Care Act has increased the number of people with health coverage in the United States. There is speculation that this increase in the number of insured could make accessing health care services more difficult. Those who are unable to access care in a timely manner may use the Internet to search for information needed to answer their health questions. Objective: The aim was to determine whether difficulty accessing health care services for reasons unrelated to insurance coverage is associated with increased use of the Internet to obtain health information. Methods: Survey data from 32,139 adults in the 2011 National Health Interview Study (NHIS) were used in this study. The exposure for this analysis was reporting difficulty accessing health care services or delaying getting care for a reason unrelated to insurance status. To define this exposure, we examined 8 questions that asked whether different access problems occurred during the previous 12 months. The outcome for this analysis, health information technology (HIT) use, was captured by examining 2 questions that asked survey respondents if they used an online health chat room or searched the Internet to obtain health information in the previous 12 months. Several multinomial logistic regressions estimating the odds of using HIT for each reported access difficulty were conducted to accomplish the study objective. Results: Of a survey population of 32,139 adults, more than 15.90\% (n=5109) reported experiencing at least one access to care barrier, whereas 3.63\% (1168/32,139) reported using online health chat rooms and 43.55\% (13,997/32,139) reported searching the Internet for health information. Adults who reported difficulty accessing health care services for reasons unrelated to their health insurance coverage had greater odds of using the Internet to obtain health information. Those who reported delaying getting care because they could not get an appointment soon enough (OR 2.2, 95\% CI 1.9-2.5), were told the doctor would not accept them as a new patient or accept their insurance (OR 2.1, 95\% CI 1.7-2.5 and OR 2.1, 95\% CI 1.7-2.5, respectively), or because the doctor's office was not open when they could go (OR 2.2, 95\% CI 1.9-2.7) had more than twice the odds of using the Internet to obtain health information compared to those who did not report such access difficulties. Conclusions: People experiencing trouble accessing health care services for reasons unrelated to their insurance status are more likely to report using the Internet to obtain health information. Improving the accuracy and reliability of health information resources that are publicly available online could help those who are searching for information due to trouble accessing health care services. ", doi="10.2196/jmir.4126", url="http://www.jmir.org/2015/4/e106/", url="http://www.ncbi.nlm.nih.gov/pubmed/25925943" } @Article{info:doi/10.2196/jmir.4164, author="Bol, Nadine and van Weert, CM Julia and de Haes, CJM Hanneke and Loos, F. Eugene and Smets, MA Ellen", title="The Effect of Modality and Narration Style on Recall of Online Health Information: Results From a Web-Based Experiment", journal="J Med Internet Res", year="2015", month="Apr", day="24", volume="17", number="4", pages="e104", keywords="instructional films and videos", keywords="narration", keywords="personal narratives", keywords="age groups", keywords="consumer health information", keywords="memory", keywords="mental recall", keywords="patient education", abstract="Background: Older adults are increasingly using the Internet for health information; however, they are often not able to correctly recall Web-based information (eHealth information). Recall of information is crucial for optimal health outcomes, such as adequate disease management and adherence to medical regimes. Combining effective message strategies may help to improve recall of eHealth information among older adults. Presenting information in an audiovisual format using conversational narration style is expected to optimize recall of information compared to other combinations of modality and narration style. Objective: The aim of this paper is to investigate the effect of modality and narration style on recall of health information, and whether there are differences between younger and older adults. Methods: We conducted a Web-based experiment using a 2 (modality: written vs audiovisual information) by 2 (narration style: formal vs conversational style) between-subjects design (N=440). Age was assessed in the questionnaire and included as a factor: younger (<65 years) versus older (?65 years) age. Participants were randomly assigned to one of four experimental webpages where information about lung cancer treatment was presented. A Web-based questionnaire assessed recall of eHealth information. Results: Audiovisual modality (vs written modality) was found to increase recall of information in both younger and older adults (P=.04). Although conversational narration style (vs formal narration style) did not increase recall of information (P=.17), a synergistic effect between modality and narration style was revealed: combining audiovisual information with conversational style outperformed combining written information with formal style (P=.01), as well as written information with conversational style (P=.045). This finding suggests that conversational style especially increases recall of information when presented audiovisually. This combination of modality and narration style improved recall of information among both younger and older adults. Conclusions: We conclude that combining audiovisual information with conversational style is the best way to present eHealth information to younger and older adults. Even though older adults did not proportionally recall more when audiovisual information was combined with conversational style than younger adults, this study reveals interesting implications for improving eHealth information that is effective for both younger and older adults. ", doi="10.2196/jmir.4164", url="http://www.jmir.org/2015/4/e104/", url="http://www.ncbi.nlm.nih.gov/pubmed/25910416" } @Article{info:doi/10.2196/jmir.3991, author="Grabner-Kr{\"a}uter, Sonja and Waiguny, KJ Martin", title="Insights Into the Impact of Online Physician Reviews on Patients' Decision Making: Randomized Experiment", journal="J Med Internet Res", year="2015", month="Apr", day="09", volume="17", number="4", pages="e93", keywords="physician reviews", keywords="physician-rating website", keywords="physician choice making", keywords="patient experiences", keywords="word of mouth", abstract="Background: Physician-rating websites combine public reporting with social networking and offer an attractive means by which users can provide feedback on their physician and obtain information about other patients' satisfaction and experiences. However, research on how users evaluate information on these portals is still scarce and only little knowledge is available about the potential influence of physician reviews on a patient's choice. Objective: Starting from the perspective of prospective patients, this paper sets out to explore how certain characteristics of physician reviews affect the evaluation of the review and users' attitudes toward the rated physician. We propose a model that relates review style and review number to constructs of review acceptance and check it with a Web-based experiment. Methods: We employed a randomized 2x2 between-subject, factorial experiment manipulating the style of a physician review (factual vs emotional) and the number of reviews for a certain physician (low vs high) to test our hypotheses. A total of 168 participants were presented with a Web-based questionnaire containing a short description of a dentist search scenario and the manipulated reviews for a fictitious dental physician. To investigate the proposed hypotheses, we carried out moderated regression analyses and a moderated mediation analysis using the PROCESS macro 2.11 for SPSS version 22. Results: Our analyses indicated that a higher number of reviews resulted in a more positive attitude toward the rated physician. The results of the regression model for attitude toward the physician suggest a positive main effect of the number of reviews (mean [low] 3.73, standard error [SE] 0.13, mean [high] 4.15, SE 0.13). We also observed an interaction effect with the style of the review---if the physician received only a few reviews, fact-oriented reviews (mean 4.09, SE 0.19) induced a more favorable attitude toward the physician compared to emotional reviews (mean 3.44, SE 0.19), but there was no such effect when the physician received many reviews. Furthermore, we found that review style also affected the perceived expertise of the reviewer. Fact-oriented reviews (mean 3.90, SE 0.13) lead to a higher perception of reviewer expertise compared to emotional reviews (mean 3.19, SE 0.13). However, this did not transfer to the attitude toward the physician. A similar effect of review style and number on the perceived credibility of the review was observed. While no differences between emotional and factual style were found if the physician received many reviews, a low number of reviews received lead to a significant difference in the perceived credibility, indicating that emotional reviews were rated less positively (mean 3.52, SE 0.18) compared to fact-oriented reviews (mean 4.15, SE 0.17). Our analyses also showed that perceived credibility of the review fully mediated the observed interaction effect on attitude toward the physician. Conclusions: Physician-rating websites are an interesting new source of information about the quality of health care from the patient's perspective. This paper makes a unique contribution to an understudied area of research by providing some insights into how people evaluate online reviews of individual doctors. Information attributes, such as review style and review number, have an impact on the evaluation of the review and on the patient's attitude toward the rated doctor. Further research is necessary to improve our understanding of the influence of such rating sites on the patient's choice of a physician. ", doi="10.2196/jmir.3991", url="http://www.jmir.org/2015/4/e93/", url="http://www.ncbi.nlm.nih.gov/pubmed/25862516" } @Article{info:doi/10.2196/jmir.3504, author="Bissonnette-Maheux, V{\'e}ronique and Provencher, Veronique and Lapointe, Annie and Dugrenier, Marilyn and Dumas, Audr{\'e}e-Anne and Pluye, Pierre and Straus, Sharon and Gagnon, Marie-Pierre and Desroches, Sophie", title="Exploring Women's Beliefs and Perceptions About Healthy Eating Blogs: A Qualitative Study", journal="J Med Internet Res", year="2015", month="Apr", day="08", volume="17", number="4", pages="e87", keywords="blog", keywords="health behavior", keywords="nutrition", keywords="qualitative research", keywords="social media", keywords="knowledge translation", abstract="Background: Chronic diseases are the leading cause of death (63\%) worldwide. A key behavioral risk factor is unhealthy eating. New strategies must be identified and evaluated to improve dietary habits. Social media, such as blogs, represent a unique opportunity for improving knowledge translation in health care through interactive communication between health consumers and health professionals. Despite the proliferation of food and lifestyle blogs, no research has been devoted to understanding potential blog readers' perceptions of healthy eating blogs written by dietitians. Objective: To identify women's salient beliefs and perceptions regarding the use of healthy eating blogs written by dietitians promoting the improvement of their dietary habits. Methods: We conducted a qualitative study with female Internet users living in the Quebec City, QC, area with suboptimal dietary habits. First, the women explored 4 existing healthy eating blogs written in French by qualified dietitians. At a focus group 2-4 weeks later, they were asked to discuss their experience and perceptions. Focus group participants were grouped by age (18-34, 35-54, and 55-75 years) and by their use of social media (users/nonusers). Using a questionnaire based on the Theory of Planned Behavior, participants were asked to identify salient beliefs underlying their attitudes (advantages/disadvantages), subjective norms (what people important to them would think), and perceptions of control (facilitators/barriers) regarding the use of a healthy eating blog written by a dietitian to improve dietary habits. Discussion groups were audiotaped, transcribed verbatim, coded, and a deductive content analysis was performed independently by 2 individuals using the NVivo software (version 10). Results: All participants (N=33) were Caucasian women aged between 22 to 73 year. Main advantages perceived of using healthy eating blogs written by a dietitian were that they provided useful recipe ideas, improved lifestyle, were a credible source of information, and allowed interaction with a dietitian. Disadvantages included increased time spent on the Internet and guilt if recommendations were not followed. Important people who would approve were family, colleagues, and friends. Important people who could disapprove were family and doctors. Main facilitators were visually attractive blogs, receiving an email notification about new posts, and finding new information on the blog. Main barriers were too much text, advertising on the blog, and lack of time. Conclusions: The women in this study valued the credibility of healthy eating blogs written by dietitians and the contact with dietitians they provided. Identifying salient beliefs underlying women's perceptions of using such blogs provides an empirically supported basis for the design of knowledge translation interventions to help prevent chronic diseases. ", doi="10.2196/jmir.3504", url="http://www.jmir.org/2015/4/e87/", url="http://www.ncbi.nlm.nih.gov/pubmed/25858777" } @Article{info:doi/10.2196/jmir.3646, author="Jung, Yuchul and Hur, Cinyoung and Jung, Dain and Kim, Minki", title="Identifying Key Hospital Service Quality Factors in Online Health Communities", journal="J Med Internet Res", year="2015", month="Apr", day="07", volume="17", number="4", pages="e90", keywords="hospital service factors", keywords="online health communities", keywords="social media-based key quality factors for hospitals", keywords="recommendation type classification", keywords="quality factor analysis", keywords="healthcare policy", abstract="Background: The volume of health-related user-created content, especially hospital-related questions and answers in online health communities, has rapidly increased. Patients and caregivers participate in online community activities to share their experiences, exchange information, and ask about recommended or discredited hospitals. However, there is little research on how to identify hospital service quality automatically from the online communities. In the past, in-depth analysis of hospitals has used random sampling surveys. However, such surveys are becoming impractical owing to the rapidly increasing volume of online data and the diverse analysis requirements of related stakeholders. Objective: As a solution for utilizing large-scale health-related information, we propose a novel approach to identify hospital service quality factors and overtime trends automatically from online health communities, especially hospital-related questions and answers. Methods: We defined social media--based key quality factors for hospitals. In addition, we developed text mining techniques to detect such factors that frequently occur in online health communities. After detecting these factors that represent qualitative aspects of hospitals, we applied a sentiment analysis to recognize the types of recommendations in messages posted within online health communities. Korea's two biggest online portals were used to test the effectiveness of detection of social media--based key quality factors for hospitals. Results: To evaluate the proposed text mining techniques, we performed manual evaluations on the extraction and classification results, such as hospital name, service quality factors, and recommendation types using a random sample of messages (ie, 5.44\% (9450/173,748) of the total messages). Service quality factor detection and hospital name extraction achieved average F1 scores of 91\% and 78\%, respectively. In terms of recommendation classification, performance (ie, precision) is 78\% on average. Extraction and classification performance still has room for improvement, but the extraction results are applicable to more detailed analysis. Further analysis of the extracted information reveals that there are differences in the details of social media--based key quality factors for hospitals according to the regions in Korea, and the patterns of change seem to accurately reflect social events (eg, influenza epidemics). Conclusions: These findings could be used to provide timely information to caregivers, hospital officials, and medical officials for health care policies. ", doi="10.2196/jmir.3646", url="http://www.jmir.org/2015/4/e90/", url="http://www.ncbi.nlm.nih.gov/pubmed/25855612" } @Article{info:doi/10.2196/jmir.3414, author="Sander, Uwe and Emmert, Martin and Dickel, Jochen and Meszmer, Nina and Kolb, Benjamin", title="Information Presentation Features and Comprehensibility of Hospital Report Cards: Design Analysis and Online Survey Among Users", journal="J Med Internet Res", year="2015", month="Mar", day="16", volume="17", number="3", pages="e68", keywords="public reporting", keywords="report cards", keywords="information presentation", abstract="Background: Improving the transparency of information about the quality of health care providers is one way to improve health care quality. It is assumed that Internet information steers patients toward better-performing health care providers and will motivate providers to improve quality. However, the effect of public reporting on hospital quality is still small. One of the reasons is that users find it difficult to understand the formats in which information is presented. Objective: We analyzed the presentation of risk-adjusted mortality rate (RAMR) for coronary angiography in the 10 most commonly used German public report cards to analyze the impact of information presentation features on their comprehensibility. We wanted to determine which information presentation features were utilized, were preferred by users, led to better comprehension, and had similar effects to those reported in evidence-based recommendations described in the literature. Methods: The study consisted of 5 steps: (1) identification of best-practice evidence about the presentation of information on hospital report cards; (2) selection of a single risk-adjusted quality indicator; (3) selection of a sample of designs adopted by German public report cards; (4) identification of the information presentation elements used in public reporting initiatives in Germany; and (5) an online panel completed an online questionnaire that was conducted to determine if respondents were able to identify the hospital with the lowest RAMR and if respondents' hospital choices were associated with particular information design elements. Results: Evidence-based recommendations were made relating to the following information presentation features relevant to report cards: evaluative table with symbols, tables without symbols, bar charts, bar charts without symbols, bar charts with symbols, symbols, evaluative word labels, highlighting, order of providers, high values to indicate good performance, explicit statements of whether high or low values indicate good performance, and incomplete data (``N/A'' as a value). When investigating the RAMR in a sample of 10 hospitals' report cards, 7 of these information presentation features were identified. Of these, 5 information presentation features improved comprehensibility in a manner reported previously in literature. Conclusions: To our knowledge, this is the first study to systematically analyze the most commonly used public reporting card designs used in Germany. Best-practice evidence identified in international literature was in agreement with 5 findings about German report card designs: (1) avoid tables without symbols, (2) include bar charts with symbols, (3) state explicitly whether high or low values indicate good performance or provide a ``good quality'' range, (4) avoid incomplete data (N/A given as a value), and (5) rank hospitals by performance. However, these findings are preliminary and should be subject of further evaluation. The implementation of 4 of these recommendations should not present insurmountable obstacles. However, ranking hospitals by performance may present substantial difficulties. ", doi="10.2196/jmir.3414", url="http://www.jmir.org/2015/3/e68/", url="http://www.ncbi.nlm.nih.gov/pubmed/25782186" } @Article{info:doi/10.2196/jmir.3721, author="Callen, Joanne and Giardina, Davis Traber and Singh, Hardeep and Li, Ling and Paoloni, Richard and Georgiou, Andrew and Runciman, B. William and Westbrook, I. Johanna", title="Emergency Physicians' Views of Direct Notification of Laboratory and Radiology Results to Patients Using the Internet: A Multisite Survey", journal="J Med Internet Res", year="2015", month="Mar", day="04", volume="17", number="3", pages="e60", keywords="Internet", keywords="patient safety", keywords="electronic health records", keywords="patient empowerment", keywords="diagnostic tests", keywords="emergency care", keywords="radiology", abstract="Background: Patients are increasingly using the Internet to communicate with health care providers and access general and personal health information. Missed test results have been identified as a critical safety issue with studies showing up to 75\% of tests for emergency department (ED) patients not being followed-up. One strategy that could reduce the likelihood of important results being missed is for ED patients to have direct access to their test results. This could be achieved electronically using a patient portal tied to the hospital's electronic medical record or accessed from the relevant laboratory information system. Patients have expressed interest in accessing test results directly, but there have been no reported studies on emergency physicians' opinions. Objective: The aim was to explore emergency physicians' current practices of test result notification and attitudes to direct patient notification of clinically significant abnormal and normal test results. Methods: A cross-sectional survey was self-administered by senior emergency physicians (site A: n=50; site B: n=39) at 2 large public metropolitan teaching hospitals in Australia. Outcome measures included current practices for notification of results (timing, methods, and responsibilities) and concerns with direct notification. Results: The response rate was 69\% (61/89). More than half of the emergency physicians (54\%, 33/61) were uncomfortable with patients receiving direct notification of abnormal test results. A similar proportion (57\%, 35/61) was comfortable with direct notification of normal test results. Physicians were more likely to agree with direct notification of normal test results if they believed it would reduce their workload (OR 5.72, 95\% CI 1.14-39.76). Main concerns were that patients could be anxious (85\%, 52/61), confused (92\%, 56/61), and lacking in the necessary expertise to interpret their results (90\%, 55/61). Conclusions: Although patients' direct access to test results could serve as a safety net reducing the likelihood of abnormal results being missed, emergency physicians' concerns need further exploration: which results are suitable and the timing and method of direct release to patients. Methods of access, including secure Web-based patient portals with drill-down facilities providing test descriptions and result interpretations, or laboratories sending results directly to patients, need evaluation to ensure patient safety is not compromised and the processes fit with ED clinician and laboratory work practices and patient needs. ", doi="10.2196/jmir.3721", url="http://www.jmir.org/2015/3/e60/", url="http://www.ncbi.nlm.nih.gov/pubmed/25739322" } @Article{info:doi/10.2196/resprot.3815, author="Haun, N. Jolie and Nazi, M. Kim and Chavez, Margeaux and Lind, D. Jason and Antinori, Nicole and Gosline, M. Robert and Martin, L. Tracey", title="A Participatory Approach to Designing and Enhancing Integrated Health Information Technology Systems for Veterans: Protocol", journal="JMIR Res Protoc", year="2015", month="Feb", day="27", volume="4", number="1", pages="e28", keywords="veterans", keywords="patient-provider communication", keywords="Department of Veterans Affairs", keywords="mixed methods", keywords="patient-centered care", abstract="Background: The Department of Veterans Affairs (VA) has developed health information technologies (HIT) and resources to improve veteran access to health care programs and services, and to support a patient-centered approach to health care delivery. To improve VA HIT access and meaningful use by veterans, it is necessary to understand their preferences for interacting with various HIT resources to accomplish health management related tasks and to exchange information. Objective: The objective of this paper was to describe a novel protocol for: (1) developing a HIT Digital Health Matrix Model; (2) conducting an Analytic Hierarchy Process called pairwise comparison to understand how and why veterans want to use electronic health resources to complete tasks related to health management; and (3) developing visual modeling simulations that depict veterans' preferences for using VA HIT to manage their health conditions and exchange health information. Methods: The study uses participatory research methods to understand how veterans prefer to use VA HIT to accomplish health management tasks within a given context, and how they would like to interact with HIT interfaces (eg, look, feel, and function) in the future. This study includes two rounds of veteran focus groups with self-administered surveys and visual modeling simulation techniques. This study will also convene an expert panel to assist in the development of a VA HIT Digital Health Matrix Model, so that both expert panel members and veteran participants can complete an Analytic Hierarchy Process, pairwise comparisons to evaluate and rank the applicability of electronic health resources for a series of health management tasks. Results: This protocol describes the iterative, participatory, and patient-centered process for: (1) developing a VA HIT Digital Health Matrix Model that outlines current VA patient-facing platforms available to veterans, describing their features and relevant contexts for use; and (2) developing visual model simulations based on direct veteran feedback that depict patient preferences for enhancing the synchronization, integration, and standardization of VA patient-facing platforms. Focus group topics include current uses, preferences, facilitators, and barriers to using electronic health resources; recommendations for synchronizing, integrating, and standardizing VA HIT; and preferences on data sharing and delegation within the VA system. Conclusions: This work highlights the practical, technological, and personal factors that facilitate and inhibit use of current VA HIT, and informs an integrated system redesign. The Digital Health Matrix Model and visual modeling simulations use knowledge of veteran preferences and experiences to directly inform enhancements to VA HIT and provide a more holistic and integrated user experience. These efforts are designed to support the adoption and sustained use of VA HIT to support patient self-management and clinical care coordination in ways that are directly aligned with veteran preferences. ", doi="10.2196/resprot.3815", url="http://www.researchprotocols.org/2015/1/e28/", url="http://www.ncbi.nlm.nih.gov/pubmed/25803324" } @Article{info:doi/10.2196/jmir.3869, author="Kauw, Dirkjan and Repping-Wuts, Han and Noordzij, Alida and Stikkelbroeck, Nike and Hermus, Ad and Faber, Marjan", title="The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care", journal="J Med Internet Res", year="2015", month="Feb", day="25", volume="17", number="3", pages="e54", keywords="online forum", keywords="self care", keywords="Cushing's syndrome", keywords="Addison's disease", abstract="Background: Addison's disease and Cushing's syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care. Objective: Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care. Methods: For this study a consecutive sample of 300 questions (``threads'') from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti. Results: From the 390 questions analyzed, 80.8\% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7\%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences. Conclusions: On an online patient forum for Cushing's syndrome and Addison's disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals. ", doi="10.2196/jmir.3869", url="http://www.jmir.org/2015/3/e54/", url="http://www.ncbi.nlm.nih.gov/pubmed/25720377" } @Article{info:doi/10.2196/jmir.3703, author="Kruse, Scott Clemens and Argueta, A. Darcy and Lopez, Lynsey and Nair, Anju", title="Patient and Provider Attitudes Toward the Use of Patient Portals for the Management of Chronic Disease: A Systematic Review", journal="J Med Internet Res", year="2015", month="Feb", day="20", volume="17", number="2", pages="e40", keywords="electronic health record (EHR)", keywords="health information technology (HIT)", keywords="internet", keywords="patient portal", keywords="chronic disease", keywords="disease management", keywords="self-management", abstract="Background: Patient portals provide patients with the tools to better manage and understand their health status. However, widespread adoption of patient portals faces resistance from patients and providers for a number of reasons, and there is limited evidence evaluating the characteristics of patient portals that received positive remarks from patients and providers. Objective: The objectives of this systematic review are to identify the shared characteristics of portals that receive favorable responses from patients and providers and to identify the elements that patients and providers believe need improvement. Methods: The authors conducted a systematic search of the CINAHL and PubMed databases to gather data about the use of patient portals in the management of chronic disease. Two reviewers analyzed the articles collected in the search process in order remove irrelevant articles. The authors selected 27 articles to use in the literature review. Results: Results of this systematic review conclude that patient portals show significant improvements in patient self-management of chronic disease and improve the quality of care provided by providers. The most prevalent positive attribute was patient-provider communication, which appeared in 10 of 27 articles (37\%). This was noted by both patients and providers. The most prevalent negative perceptions are security (concerns) and user-friendliness, both of which occurred in 11 of 27 articles (41\%). The user-friendliness quality was a concern for patients and providers who are not familiar with advanced technology and therefore find it difficult to navigate the patient portal. The high cost of installation and maintenance of a portal system, not surprisingly, deters some providers from implementing such technology into their practice, but this was only mentioned in 3 of the 27 articles (11\%). It is possible that the incentives for meaningful use assuage the barrier of cost. Conclusions: This systematic review revealed mixed attitudes from patients and their providers regarding the use of patient portals to manage their chronic disease. The authors suggest that a standard patient portal design providing patients with the resources to understand and manage their chronic conditions will promote the adoption of patient portals in health care organizations. ", doi="10.2196/jmir.3703", url="http://www.jmir.org/2015/2/e40/", url="http://www.ncbi.nlm.nih.gov/pubmed/25707035" } @Article{info:doi/10.2196/jmir.3564, author="Ahadzadeh, Sadat Ashraf and Pahlevan Sharif, Saeed and Ong, Sim Fon and Khong, Wei Kok", title="Integrating Health Belief Model and Technology Acceptance Model: An Investigation of Health-Related Internet Use", journal="J Med Internet Res", year="2015", month="Feb", day="19", volume="17", number="2", pages="e45", keywords="health beliefs", keywords="Technology Acceptance Model", keywords="health-related Internet use behavior", keywords="mediation effect", abstract="Background: Today, people use the Internet to satisfy health-related information and communication needs. In Malaysia, Internet use for health management has become increasingly significant due to the increase in the incidence of chronic diseases, in particular among urban women and their desire to stay healthy. Past studies adopted the Technology Acceptance Model (TAM) and Health Belief Model (HBM) independently to explain Internet use for health-related purposes. Although both the TAM and HBM have their own merits, independently they lack the ability to explain the cognition and the related mechanism in which individuals use the Internet for health purposes. Objective: This study aimed to examine the influence of perceived health risk and health consciousness on health-related Internet use based on the HBM. Drawing on the TAM, it also tested the mediating effects of perceived usefulness of the Internet for health information and attitude toward Internet use for health purposes for the relationship between health-related factors, namely perceived health risk and health consciousness on health-related Internet use. Methods: Data obtained for the current study were collected using purposive sampling; the sample consisted of women in Malaysia who had Internet access. The partial least squares structural equation modeling method was used to test the research hypotheses developed. Results: Perceived health risk ($\beta$=.135, t1999=2.676) and health consciousness ($\beta$=.447, t1999=9.168) had a positive influence on health-related Internet use. Moreover, perceived usefulness of the Internet and attitude toward Internet use for health-related purposes partially mediated the influence of health consciousness on health-related Internet use ($\beta$=.025, t1999=3.234), whereas the effect of perceived health risk on health-related Internet use was fully mediated by perceived usefulness of the Internet and attitude ($\beta$=.029, t1999=3.609). These results suggest the central role of perceived usefulness of the Internet and attitude toward Internet use for health purposes for women who were health conscious and who perceived their health to be at risk. Conclusions: The integrated model proposed and tested in this study shows that the HBM, when combined with the TAM, is able to predict Internet use for health purposes. For women who subjectively evaluate their health as vulnerable to diseases and are concerned about their health, cognition beliefs in and positive affective feelings about the Internet come into play in determining the use of health-related Internet use. Furthermore, this study shows that engaging in health-related Internet use is a proactive behavior rather than a reactive behavior, suggesting that TAM dimensions have a significant mediating role in Internet health management. ", doi="10.2196/jmir.3564", url="http://www.jmir.org/2015/2/e45/", url="http://www.ncbi.nlm.nih.gov/pubmed/25700481" } @Article{info:doi/10.2196/resprot.3795, author="Reven{\"a}s, {\AA}sa and Opava, H. Christina and Martin, Cathrin and Demmelmaier, Ingrid and Keller, Christina and {\AA}senl{\"o}f, Pernilla", title="Development of a Web-Based and Mobile App to Support Physical Activity in Individuals With Rheumatoid Arthritis: Results From the Second Step of a Co-Design Process", journal="JMIR Res Protoc", year="2015", month="Feb", day="09", volume="4", number="1", pages="e22", keywords="eHealth", keywords="Internet intervention", keywords="physical activity", keywords="rheumatoid arthritis", keywords="behavior change techniques", keywords="participatory design", abstract="Background: Long-term adherence to physical activity recommendations remains challenging for most individuals with rheumatoid arthritis (RA) despite evidence for its health benefits. Objective: The aim of this study was to provide basic data on system requirement specifications for a Web-based and mobile app to self-manage physical activity. More specifically, we explored the target user group, features of the future app, and correlations between the system requirements and the established behavior change techniques (BCTs). Methods: We used a participatory action research design. Qualitative data were collected using multiple methods in four workshops. Participants were 5 individuals with RA, a clinical physiotherapist, an officer from the Swedish Rheumatism Association, a Web designer, and 2 physiotherapy researchers. A taxonomy was used to determine the degree of correlation between the system requirements and established BCTs. Results: Participants agreed that the future Web-based and mobile app should be based on two major components important for maintaining physical activity: (1) a calendar feature for goal setting, planning, and recording of physical activity performance and progress, and (2) a small community feature for positive feedback and support from peers. All system requirements correlated with established BCTs, which were coded as 24 different BCTs. Conclusions: To our knowledge, this study is the first to involve individuals with RA as co-designers, in collaboration with clinicians, researchers, and Web designers, to produce basic data to generate system requirement specifications for an eHealth service. The system requirements correlated to the BCTs, making specifications of content and future evaluation of effectiveness possible. ", doi="10.2196/resprot.3795", url="http://www.researchprotocols.org/2015/1/e22/", url="http://www.ncbi.nlm.nih.gov/pubmed/25665589" } @Article{info:doi/10.2196/jmir.3915, author="Merolli, Mark and Gray, Kathleen and Martin-Sanchez, Fernando and Lopez-Campos, Guillermo", title="Patient-Reported Outcomes and Therapeutic Affordances of Social Media: Findings From a Global Online Survey of People With Chronic Pain", journal="J Med Internet Res", year="2015", month="Jan", day="22", volume="17", number="1", pages="e20", keywords="social media", keywords="chronic disease", keywords="chronic pain", keywords="therapeutic affordances", keywords="patient-reported outcomes", abstract="Background: Patient-reported outcomes (PROs) from social media use in chronic disease management continue to emerge. While many published articles suggest the potential for social media is positive, there is a lack of robust examination into mediating mechanisms that might help explain social media's therapeutic value. This study presents findings from a global online survey of people with chronic pain (PWCP) to better understand how they use social media as part of self-management. Objective: Our aim is to improve understanding of the various health outcomes reported by PWCP by paying close attention to therapeutic affordances of social media. We wish to examine if demographics of participants underpin health outcomes and whether the concept of therapeutic affordances explains links between social media use and PROs. The goal is for this to help tailor future recommendations for use of social media to meet individuals' health needs and improve clinical practice of social media use. Methods: A total of 231 PWCP took part in a global online survey investigating PROs from social media use. Recruited through various chronic disease entities and social networks, participants provided information on demographics, health/pain status, social media use, therapeutic affordances, and PROs from use. Quantitative analysis was performed on the data using descriptive statistics, cross-tabulation, and cluster analysis. Results: The total dataset represented 218 completed surveys. The majority of participants were university educated (67.0\%, 146/218) and female (83.9\%, 183/218). More than half (58.7\%, 128/218) were married/partnered and not working for pay (75.9\%, 88/116 of these due to ill health). Fibromyalgia (46.6\%, 55/118) and arthritis (27.1\%, 32/118) were the most commonly reported conditions causing pain. Participants showed a clear affinity for social network site use (90.0\%, 189/210), followed by discussion forums and blogs. PROs were consistent, suggesting that social media positively impact psychological, social, and cognitive health. Analysis also highlighted two strong correlations linking platform used and health outcomes (particularly psychological, social, and cognitive) to (1) the narrative affordance of social media and (2) frequency of use of the platforms. Conclusions: Results did not uncover definitive demographics or characteristics of PWCP for which health outcomes are impacted. However, findings corroborate literature within this domain suggesting that there is a typical profile of people who use social media for health and that social media are more suited to particular health outcomes. Exploration of the relationship between social media's therapeutic affordances and health outcomes, in particular the narration affordance, warrants further attention by patients and clinicians. ", doi="10.2196/jmir.3915", url="http://www.jmir.org/2015/1/e20/", url="http://www.ncbi.nlm.nih.gov/pubmed/25616273" } @Article{info:doi/10.2196/resprot.3796, author="Kuijpers, Wilma and Groen, G. Wim and Oldenburg, SA Hester and Wouters, WJM Michel and Aaronson, K. Neil and van Harten, H. Wim", title="Development of MijnAVL, an Interactive Portal to Empower Breast and Lung Cancer Survivors: An Iterative, Multi-Stakeholder Approach", journal="JMIR Res Protoc", year="2015", month="Jan", day="22", volume="4", number="1", pages="e14", keywords="cancer survivors", keywords="interactive portal", keywords="development", keywords="usability testing", keywords="empowerment", abstract="Background: MijnAVL (MyAVL) is an interactive portal being developed to empower cancer survivors. Literature review and focus groups yielded the selection of features such as access to the electronic medical record (EMR), patient reported outcomes (PROs) and related feedback, and a physical activity support program. Objective: Our aim was to present a final design of MijnAVL based on (1) health professionals' evaluation of proposed features, (2) cancer survivors' evaluation of a first draft, and (3) cancer survivors' evaluation of a functional online prototype. Methods: Professionals from various disciplines gave input to the content of and procedures related to MijnAVL. Subsequently, 16 cancer survivors participated in an interview to evaluate content and graphic design of a first draft (shown with screenshots). Finally, 7 survivors participated in a usability test with a fully functional prototype. They performed predefined tasks (eg, logging in, finding a test result, completing a questionnaire) while thinking aloud. Descriptive statistics and simple content analysis were used to analyze the data of both the interviews and the usability tests. Results: Professionals supported access to the EMR (eg, histology reports, lab results, and their letters to general practitioners). They also informed the development of PROs and the physical activity support program. Based on the first draft, survivors selected the preferred graphic design, approved the features and provided suggestions for the content (eg, explanation of medical jargon, more concise texts, notification by emails). Usability tests revealed that it was relatively easy to navigate the website and use the different features. Recommendations included, among others, a frequently asked questions section and the use of hyperlinks between different parts of the website. Conclusions: The development of MijnAVL, an interactive portal to empower breast and lung cancer survivors, was performed iteratively and involved multiple groups of end-users. This approach resulted in a usable and understandable final version. Its effectiveness should be determined in further research. ", doi="10.2196/resprot.3796", url="http://www.researchprotocols.org/2015/1/e14/", url="http://www.ncbi.nlm.nih.gov/pubmed/25614924" } @Article{info:doi/10.2196/ijmr.3835, author="Knight, Emily and Intzandt, Brittany and MacDougall, Alicia and Saunders, J. Travis", title="Information Seeking in Social Media: A Review of YouTube for Sedentary Behavior Content", journal="Interact J Med Res", year="2015", month="Jan", day="20", volume="4", number="1", pages="e3", keywords="sedentary lifestyle", keywords="translational medical research", keywords="social media", abstract="Background: The global prevalence of sedentary lifestyles is of grave concern for public health around the world. Moreover, the health risk of sedentary behaviors is of growing interest for researchers, clinicians, and the general public as evidence demonstrates that prolonged amounts of sedentary time increases risk for lifestyle-related diseases. There is a growing trend in the literature that reports how social media can facilitate knowledge sharing and collaboration. Social sites like YouTube facilitate the sharing of media content between users. Objective: The purpose of this project was to identify sedentary behavior content on YouTube and describe features of this content that may impact the effectiveness of YouTube for knowledge translation. Methods: YouTube was searched on a single day by 3 independent reviewers for evidence-based sedentary behavior content. Subjective data (eg, video purpose, source, and activity type portrayed) and objective data (eg, number of views, comments, shares, and length of the video) were collected from video. Results: In total, 106 videos met inclusion criteria. Videos were uploaded from 13 countries around the globe (ie, Australia, Barbados, Belgium, Canada, Colombia, Kenya, New Zealand, Russia, South Africa, Spain, Ukraine, United Kingdom, United States). The median video length was 3:00 minutes: interquartile range (IQR) 1:44-5:40. On average, videos had been on YouTube for 15.0 months (IQR 6.0-27.5) and had been viewed 239.0 times (IQR 44.5-917.5). Videos had remarkably low numbers of shares (median 0) and comments (median 1). Only 37.7\% (40/106) of videos portrayed content on sedentary behaviors, while the remaining 66 videos portrayed physical activity or a mix of behaviors. Academic/health organizations (39.6\%, 42/106) and individuals (38.7\%, 41/106) were the most prevalent source of videos, and most videos (67.0\%, 71/106) aimed to educate viewers about the topic. Conclusions: This study explored sedentary behavior content available on YouTube. Findings demonstrate that there is confusion between physical activity and sedentary behaviors, that content is being uploaded to the site from around the globe, that content is primarily from health organizations and individuals with the purpose of educating fellow users, but that low views, comments, and shares suggest that sedentary behavior content is relatively underutilized on YouTube. Future research may wish to leverage social platforms, such as YouTube, to facilitate implementation and sharing of evidence-based sedentary behavior content. ", doi="10.2196/ijmr.3835", url="http://www.i-jmr.org/2015/1/e3/", url="http://www.ncbi.nlm.nih.gov/pubmed/25604433" } @Article{info:doi/10.2196/jmir.3588, author="Silver, Pannor Michelle", title="Patient Perspectives on Online Health Information and Communication With Doctors: A Qualitative Study of Patients 50 Years Old and Over", journal="J Med Internet Res", year="2015", month="Jan", day="13", volume="17", number="1", pages="e19", keywords="health communication", keywords="Internet", keywords="online health information seeking", keywords="barriers to patient-doctor communication", keywords="adults 50 years old and over", keywords="qualitative research", abstract="Background: As health care systems around the world shift toward models that emphasize self-care management, there is increasing pressure for patients to obtain health information online. It is critical that patients are able to identify potential problems with using the Internet to diagnose and treat a health issue and that they feel comfortable communicating with their doctor about the health information they acquire from the Internet. Objective: Our aim was to examine patient-identified (1) problems with using the Internet to identify and treat a health issue, (2) barriers to communication with a doctor about online health information seeking, and (3) facilitators of communication with a doctor about patient searches for health information on the Internet. Methods: For this qualitative exploratory study, semistructured interviews were conducted with a sample of 56 adults age 50 years old and over. General concerns regarding use of the Internet to diagnose and treat a health issue were examined separately for participants based on whether they had ever discussed health information obtained through the Internet with a doctor. Discussions about barriers to and facilitators of communication about patient searches for health information on the Internet with a doctor were analyzed using thematic analysis. Results: Six higher-level general concerns emerged: (1) limitations in own ability, (2) credibility/limitations of online information, (3) anxiety, (4) time consumption, (5) conflict, and (6) non-physical harm. The most prevalent concern raised by participants who communicated with a doctor about their online health information seeking related to the credibility or limitations in online information. Participants who had never communicated with a doctor about their online health information seeking most commonly reported concerns about non-physical harm. Four barriers to communication emerged: (1) concerns about embarrassment, (2) concerns that the doctor doesn't want to hear about it, (3) belief that there is no need to bring it up, and (4) forgetting to bring it up. Facilitators of communication included: (1) having a family member present at doctor visits, (2) doctor-initiated inquiries, and (3) encountering an advertisement that suggested talking with a doctor. Conclusions: Overall, participants displayed awareness of potential problems related to online health information seeking. Findings from this study point to a set of barriers as well as facilitators of communication about online health information seeking between patients and doctors. This study highlights the need for enhanced patient communication skills, eHealth literacy assessments that are accompanied by targeted resources pointing individuals to high-quality credible online health information, and the need to remind patients of the importance of consulting a medical professional when they use online health resources to diagnose and treat a health issue. ", doi="10.2196/jmir.3588", url="http://www.jmir.org/2015/1/e19/", url="http://www.ncbi.nlm.nih.gov/pubmed/25586865" } @Article{info:doi/10.2196/jmir.3749, author="Medlock, Stephanie and Eslami, Saeid and Askari, Marjan and Arts, L. Derk and Sent, Danielle and de Rooij, E. Sophia and Abu-Hanna, Ameen", title="Health Information--Seeking Behavior of Seniors Who Use the Internet: A Survey", journal="J Med Internet Res", year="2015", month="Jan", day="08", volume="17", number="1", pages="e10", keywords="aged", keywords="aged, 80 and over", keywords="information-seeking behavior", keywords="Internet", keywords="patient education", keywords="empowerment", abstract="Background: The Internet is viewed as an important source for health information and a medium for patient empowerment. However, little is known about how seniors use the Internet in relation to other sources for health information. Objective: The aim was to determine which information resources seniors who use the Internet use and trust for health information, which sources are preferred, and which sources are used by seniors for different information needs. Methods: Questions from published surveys were selected based on their relevance to the study objectives. The Autonomy Preference Index was used to assess information needs and preferences for involvement in health decisions. Invitation to participate in this online survey was sent to the email list of a local senior organization (298 addresses) in the Netherlands. Results: There were 118 respondents with a median age of 72 years (IQR 67-78 years). Health professionals, pharmacists, and the Internet were the most commonly used and trusted sources of health information. Leaflets, television, newspapers, and health magazines were also important sources. Respondents who reported higher use of the Internet also reported higher use of other sources (P<.001). Use of health professionals, pharmacists, leaflets, telephone, television, and radio were not significantly different; use of all other resources was significantly higher in frequent Internet users. When in need of health information, preferred sources were the Internet (46/105, 43.8\%), other sources (eg, magazines 38/105, 36.2\%), health professionals (18/105, 17.1\%), and no information seeking (3/105, 2.8\%). Of the 51/107 respondents who indicated that they had sought health information in the last 12 months, 43 sought it after an appointment, 23 were preparing for an appointment, and 20 were deciding if an appointment was needed. The source used varied by the type of information sought. The Internet was used most often for symptoms (27/42, 64\%), prognosis (21/31, 68\%), and treatment options (23/41, 62\%), whereas health professionals were asked for additional information on medications (20/36, 56\%), side effects (17/36, 47\%), coping (17/31, 55\%), practical care (12/14, 86\%), and nutrition/exercise (18/30, 60\%). Conclusions: For these seniors who use the Internet, the Internet was a preferred source of health information. Seniors who report higher use of the Internet also report higher use of other information resources and were also the primary consumers of paper-based resources. Respondents most frequently searched for health information after an appointment rather than to prepare for an appointment. Resources used varied by health topic. Future research should seek to confirm these findings in a general elderly population, investigate how seniors seek and understand information on the Internet, and investigate how to reach seniors who prefer not to use the Internet for health information. ", doi="10.2196/jmir.3749", url="http://www.jmir.org/2015/1/e10/", url="http://www.ncbi.nlm.nih.gov/pubmed/25574815" } @Article{info:doi/10.2196/jmir.3545, author="Fradgley, A. Elizabeth and Paul, L. Christine and Bryant, Jamie and Roos, A. Ian and Henskens, A. Frans and Paul, J. David", title="Consumer Participation in Quality Improvements for Chronic Disease Care: Development and Evaluation of an Interactive Patient-Centered Survey to Identify Preferred Service Initiatives", journal="J Med Internet Res", year="2014", month="Dec", day="19", volume="16", number="12", pages="e292", keywords="ambulatory care", keywords="health care surveys", keywords="patient-centered care", keywords="consumer participation", keywords="medical oncology", keywords="chronic disease", keywords="cardiology", keywords="neurology", abstract="Background: With increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives. Objective: The aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score. Methods: In Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time. Results: A total of 741 of 1042 individuals consented to participate (71.11\% consent), 529 of 741 completed all survey content (78.9\% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen's kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement ranging from 82.1\%-100.0\%. The majority of participants indicated the Web-based survey was easy to complete (97.9\%, 531/543) and comprehensive (93.1\%, 505/543). Participants also reported the interactive relative prioritization exercise was easy to complete (97.0\%, 189/195) and helped them to decide which initiatives were of most importance (84.6\%, 165/195). Average completion time was 8.54 minutes (SD 3.91) and the Flesch-Kincaid reading level was 6.8. Overall, 84.6\% (447/529) of participants indicated a willingness to complete a similar survey again. Conclusions: The Web-based Consumer Preferences Survey is sufficiently reliable and highly acceptable to patients. Based on completion times and reading level, this tool could be integrated in routine clinical practice and allows consumers to easily participate in quality evaluation. Results provide a comprehensive list of patient-prioritized initiatives for patients with major chronic conditions and delivers practice-ready evidence to guide improvements in patient-centered care. ", doi="10.2196/jmir.3545", url="http://www.jmir.org/2014/12/e292/", url="http://www.ncbi.nlm.nih.gov/pubmed/25532217" } @Article{info:doi/10.2196/jmir.3706, author="Lee, Kenneth and Hoti, Kreshnik and Hughes, David Jeffery and Emmerton, Lynne", title="Dr Google and the Consumer: A Qualitative Study Exploring the Navigational Needs and Online Health Information-Seeking Behaviors of Consumers With Chronic Health Conditions", journal="J Med Internet Res", year="2014", month="Dec", day="02", volume="16", number="12", pages="e262", keywords="online health information seeking", keywords="health information search", keywords="health seeking behavior", keywords="consumer health information", keywords="information needs", keywords="Internet", keywords="chronic disease", keywords="patients", keywords="qualitative research", keywords="interview", abstract="Background: The abundance of health information available online provides consumers with greater access to information pertinent to the management of health conditions. This is particularly important given an increasing drive for consumer-focused health care models globally, especially in the management of chronic health conditions, and in recognition of challenges faced by lay consumers with finding, understanding, and acting on health information sourced online. There is a paucity of literature exploring the navigational needs of consumers with regards to accessing online health information. Further, existing interventions appear to be didactic in nature, and it is unclear whether such interventions appeal to consumers' needs. Objective: Our goal was to explore the navigational needs of consumers with chronic health conditions in finding online health information within the broader context of consumers' online health information-seeking behaviors. Potential barriers to online navigation were also identified. Methods: Semistructured interviews were conducted with adult consumers who reported using the Internet for health information and had at least one chronic health condition. Participants were recruited from nine metropolitan community pharmacies within Western Australia, as well as through various media channels. Interviews were audio-recorded, transcribed verbatim, and then imported into QSR NVivo 10. Two established approaches to thematic analysis were adopted. First, a data-driven approach was used to minimize potential bias in analysis and improve construct and criterion validity. A theory-driven approach was subsequently used to confirm themes identified by the former approach and to ensure identified themes were relevant to the objectives. Two levels of analysis were conducted for both data-driven and theory-driven approaches: manifest-level analysis, whereby face-value themes were identified, and latent-level analysis, whereby underlying concepts were identified. Results: We conducted 17 interviews, with data saturation achieved by the 14th interview. While we identified a broad range of online health information-seeking behaviors, most related to information discussed during consumer-health professional consultations such as looking for information about medication side effects. The barriers we identified included intrinsic barriers, such as limited eHealth literacy, and extrinsic barriers, such as the inconsistency of information between different online sources. The navigational needs of our participants were extrinsic in nature and included health professionals directing consumers to appropriate online resources and better filtering of online health information. Our participants' online health information-seeking behaviors, reported barriers, and navigational needs were underpinned by the themes of trust, patient activation, and relevance. Conclusions: This study suggests that existing interventions aimed to assist consumers with navigating online health information may not be what consumers want or perceive they need. eHealth literacy and patient activation appear to be prevalent concepts in the context of consumers' online health information-seeking behaviors. Furthermore, the role for health professionals in guiding consumers to quality online health information is highlighted. ", doi="10.2196/jmir.3706", url="http://www.jmir.org/2014/12/e262/", url="http://www.ncbi.nlm.nih.gov/pubmed/25470306" } @Article{info:doi/10.2196/jmir.3517, author="Batenburg, Anika and Das, Enny", title="Emotional Approach Coping and the Effects of Online Peer-Led Support Group Participation Among Patients With Breast Cancer: A Longitudinal Study", journal="J Med Internet Res", year="2014", month="Nov", day="28", volume="16", number="11", pages="e256", keywords="Internet", keywords="breast neoplasms", keywords="self-help groups", keywords="social support", keywords="online systems", keywords="emotions", abstract="Background: Previous research on the effects of online peer support on psychological well-being of patients with cancer showed mixed findings. There is a need for longitudinal studies explaining if and when online peer-led support groups are beneficial. How patients cope with emotions that come along with the cancer diagnosis might influence effectiveness of online participation. Emotional approach coping is a construct encompassing the intentional use of emotional processing and emotional expression in efforts to manage adverse circumstances. Objective: In this longitudinal study, we hypothesize that mixed findings in previous research are partly caused by individual differences in coping with emotions, which may moderate the effects of online support group participation on patients' well-being. Methods: A total of 133 Dutch patients with breast cancer filled out a baseline (T0) and a follow-up (T1, 6 months later) questionnaire assessing intensity of online participation within the online support community, emotional approach coping (ie, actively processing and expressing emotions), and psychological well-being (depression, emotional well-being, and breast cancer--related concerns). There were 109 patients who visited an online support community at both points in time. Repeated measures ANOVAs assessed change in well-being over time. Results: Results showed 3-way interactions of time, online intensity of participation, and emotional approach coping on emotional well-being (F1,89=4.232, P=.04, $\eta$2$\rho$=.045) and depression (F1,88=8.167, P=.005, $\eta$2$\rho$=.085). Online support group participation increased emotional well-being over time for patients who scored low on emotional approach coping at T0, provided that they were highly active online. Patients who were highly active online with a high score on emotional approach coping reported no change in sense of well-being, but showed the highest score on well-being overall. Participating less frequently online was only beneficial for patients who scored high on emotional approach coping, showing an increase in well-being over time. Patients participating less frequently and with a low score on emotional approach coping reported no significant change in well-being over time. Conclusions: This study extends previous findings on the effects of online peer support in two ways: by testing changes in well-being as a function of intensity of online support group participation and by examining the role of individual differences in emotional coping styles. Findings showed no negative effects of intense support group participation. Participating frequently online was especially helpful for patients who approach their emotions less actively; their emotional well-being increased over time. In contrast, frequent online users who actively approach their emotions experienced no change in well-being, reporting highest levels of well-being overall. For patients who participate less intensively within the support community, coping style seems to outweigh effects of online participation; over time, patients who actively approached emotions experienced an increase in psychological well-being, whereas patients with a low score on emotional approach coping reported no change in depression and emotional well-being. ", doi="10.2196/jmir.3517", url="http://www.jmir.org/2014/11/e256/", url="http://www.ncbi.nlm.nih.gov/pubmed/25474819" } @Article{info:doi/10.2196/jmir.3363, author="Jackson, L. Sara and Mejilla, Roanne and Darer, D. Jonathan and Oster, V. Natalia and Ralston, D. James and Leveille, G. Suzanne and Walker, Jan and Delbanco, Tom and Elmore, G. Joann", title="Patients Who Share Transparent Visit Notes With Others: Characteristics, Risks, and Benefits", journal="J Med Internet Res", year="2014", month="Nov", day="12", volume="16", number="11", pages="e247", keywords="open access to information", keywords="caregivers", keywords="health behavior", keywords="information sharing", abstract="Background: Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might be. Objective: Our goal was to evaluate the characteristics of patients who reported sharing their visit notes during the course of the study, including their views on associated benefits and risks. Methods: The OpenNotes study invited patients to access their primary care providers' visit notes in Massachusetts, Pennsylvania, and Washington. Pre- and post-intervention surveys assessed patient demographics, standardized measures of patient-doctor communication, sharing of visit notes with others during the study, and specific health behaviors reflecting the potential benefits and risks of offering patients easy access to their visit notes. Results: More than half (55.43\%, 2503/4516) of the participants who reported viewing at least one visit note would like the option of letting family members or friends have their own Web access to their visit notes, and 21.70\% (980/4516) reported sharing their visit notes with someone during the study year. Men, and those retired or unable to work, were significantly more likely to share visit notes, and those sharing were neither more nor less concerned about their privacy than were non-sharers. Compared to participants who did not share clinic notes, those who shared were more likely to report taking better care of themselves and taking their medications as prescribed, after adjustment for age, gender, employment status, and study site. Conclusions: One in five OpenNotes patients shared a visit note with someone, and those sharing Web access to their visit notes reported better adherence to self-care and medications. As health information technology systems increase patients' ability to access their medical records, facilitating access to caregivers may improve perceived health behaviors and outcomes. ", doi="10.2196/jmir.3363", url="http://www.jmir.org/2014/11/e247/", url="http://www.ncbi.nlm.nih.gov/pubmed/25405911" } @Article{info:doi/10.2196/resprot.3695, author="van Bruinessen, Renske Inge and van Weel-Baumgarten, M. Evelyn and Snippe, Wouter Harm and Gouw, Hans and Zijlstra, M. Jos{\'e}e and van Dulmen, Sandra", title="Active Patient Participation in the Development of an Online Intervention", journal="JMIR Res Protoc", year="2014", month="Nov", day="06", volume="3", number="4", pages="e59", keywords="communication", keywords="malignant lymphoma", keywords="online intervention", keywords="self-help application", keywords="patient participation", keywords="intervention development", abstract="Background: An important and challenging part of living with cancer relates to the repeated visits to the hospital. Since how patients cope between these post-diagnostic visits depends partly on the information and support received from their physician during the visits, it is important to make the most of them. Recent findings reinforce the importance of training not only the health care professionals in communication skills, but providing patients with support in communication as well. Delivering such supportive interventions online can have potential benefits in terms of accessibility, cost-effectiveness, and ability to tailor information to personal needs. However, problems with attrition (dropout, non-usage) during the test phase and poor uptake after implementation are frequently reported. The marginal level of engagement of the patient as end user seems to play a role in this. Therefore, recent research suggests integrating theory-based development methods with methods that promote involvement of the patient at an early stage. This paper describes a participatory protocol, used to let patients guide a theory-informed development process. Objective: The objective of this project was to apply a bottom-up inspired procedure to develop a patient-centered intervention with corresponding evaluation and implementation plan. Methods: The applied development protocol was based on the intervention mapping framework, combined with patient participatory methods that were inspired by the participation ladder and user-centred design methods. Results: The applied protocol led to a self-directed online communication intervention aimed at helping patients gain control during their communications with health care professionals. It also led to an evaluation plan and an implementation plan. The protocol enabled the continuous involvement of patient research partners and the partial involvement of patient service users, which led to valuable insights and improvements. Conclusions: The applied protocol realized patient participation on different levels throughout the entire project. Early involvement, involvement on different levels, and flexibility in terms of planning and setup seem to be preconditions to creating a bottom-up inspired development procedure with (seriously ill) patients. Further research is necessary to find out if a more patient-centered approach improves the implementation and uptake of eHealth interventions. Trial Registration: Netherlands National Trial Register ID number: NTR3779; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3779 (Archived by WebCite at http://www.webcitation.org/6TdfALKxV). ", doi="10.2196/resprot.3695", url="http://www.researchprotocols.org/2014/4/e59/", url="http://www.ncbi.nlm.nih.gov/pubmed/25379679" } @Article{info:doi/10.2196/jmir.3368, author="Shahab, Lion and Brown, Jamie and Gardner, Benjamin and Smith, George Samuel", title="Seeking Health Information and Support Online: Does It Differ as a Function of Engagement in Risky Health Behaviors? Evidence From the Health Information National Trends Survey", journal="J Med Internet Res", year="2014", month="Nov", day="06", volume="16", number="11", pages="e253", keywords="health-risk behavior", keywords="online support", keywords="Internet-based intervention", keywords="information seeking", keywords="health information and national trends survey (HINTS)", abstract="Background: The Internet is an important tool to deliver health behavior interventions, yet little is known about Internet access and use of health-related information, or support, by the intended intervention recipients. Objective: Our aim was to evaluate whether health-related Internet use differed as a function of common health-risk behaviors (excessive alcohol consumption, smoking, low fruit/vegetable intake, inactive/sedentary lifestyle, unprotected sun exposure, or obesity). Methods: Sociodemographic, health behavior characteristics, and information on Internet access and use were assessed in the nationally representative US Health Information National Trends Survey (HINTS) 4. Data from 3911 participants collated in 2011/12 were included. Results: Of the 78.2\% (95\% CI 76.1-80.1) of participants who had ever accessed the Internet, approximately three-quarters (78.2\%, 95\% CI 75.4-80.7) had obtained health-related information online last year. About half had used the Internet as the first source of health-related information (47.8\%, 95\% CI 44.8-50.7) or to access behavioral support (56.9\%, 95\% CI 53.7-60.0) in the last year. Adjusting for sociodemographic determinants of going online (being younger, white, female, with at least college education) revealed few differences in Internet access and use between health-risk behaviors. Participants with inadequate sun protection were less likely to access the Internet (OR 0.59, 95\% CI 0.04-0.88) and those with low fruit/vegetable intake were less likely to have gone online to obtain health-related information last year (OR 0.60, 95\% CI 0.45-0.80). Smokers in particular were likely to use the Internet to obtain behavioral support (OR 1.90, 95\% CI 1.35-2.68). Conclusions: Internet access and use to obtain health-related information and support is widespread and mostly independent of engagement in various health-risk behaviors. However, those with low fruit/vegetable intake or inadequate sun-protective behaviors may be more difficult to reach with Internet-based interventions. In addition, when developing online health promotions, relevant sociodemographic determinants of Internet use need to be targeted to maximize their impact. ", doi="10.2196/jmir.3368", url="http://www.jmir.org/2014/11/e253/", url="http://www.ncbi.nlm.nih.gov/pubmed/25380308" } @Article{info:doi/10.2196/jmir.3371, author="Phelps, G. Richard and Taylor, Joanne and Simpson, Keith and Samuel, Jasmine and Turner, Neil A.", title="Patients' Continuing Use of an Online Health Record: A Quantitative Evaluation of 14,000 Patient Years of Access Data", journal="J Med Internet Res", year="2014", month="Oct", day="24", volume="16", number="10", pages="e241", keywords="electronic health records", keywords="patient access to personal records", keywords="chronic renal insufficiency", keywords="utilization", abstract="Background: Online access to all or part of their health records is widely demanded by patients and, where provided in form of patient portals, has been substantially used by at least subgroups of patients, particularly those with chronic disease. However, little is reported regarding the longer-term patient use of patient-accessible electronic health record services, which is important in allocating resources. Renal PatientView (RPV) is an established system that gives patients with chronic kidney disease access to live test results and information about their condition and treatment. It is available in most UK renal units with up to 75\% of particular patient groups registered in some centers. We have analyzed patient use out to 4 years and investigated factors associated with more persistent use. Objective: Our aim was to investigate RPV use by patients over time from initial registration in order to understand which patients choose to access RPV and the endurance of its appeal for different patient groups. Methods: We analyzed an anonymized extract of the database underlying RPV containing information on patient registration and events including patient access and the arrival of new blood test results or letters that patients might wish to view. Results: At the time of the extract, there were 11,352 patients registered on RPV for 0-42 months (median 17). More than half of registrants became persistent users, logging in a median of 2.0 times each month over post-registration intervals of up to 42 months (median 18.9). Provision of assistance with first logon was strongly associated with becoming a persistent user, even at 3 years. Logons by persistent users occurred around the time of consultations/tests, strongly suggestive of patient engagement. While indices indicative of greater deprivation were the strongest determinants of non-participation, they had negligible influence on drop-out rates among established users. Conclusions: In this mature patient portal system, a large proportion of patients made regular use of their online health records over protracted periods. The patterns and timing of use indicate strong patient interest in detailed information such as recent test results and clinic letters. Supporting patients through the first steps of establishing access to their online records is associated with much higher rates of long-term use of RPV and likely would increase use of other electronic health records provided for patients with chronic disease. ", doi="10.2196/jmir.3371", url="http://www.jmir.org/2014/10/e241/", url="http://www.ncbi.nlm.nih.gov/pubmed/25344621" } @Article{info:doi/10.2196/jmir.3198, author="Simon, CR Airin and Gude, T. Wouter and Holleman, Frits and Hoekstra, BL Joost and Peek, Niels", title="Diabetes Patients' Experiences With the Implementation of Insulin Therapy and Their Perceptions of Computer-Assisted Self-Management Systems for Insulin Therapy", journal="J Med Internet Res", year="2014", month="Oct", day="23", volume="16", number="10", pages="e235", keywords="Type 2 diabetes mellitus", keywords="clinical decision support systems", keywords="patient acceptance of health care", abstract="Background: Computer-assisted decision support is an emerging modality to assist patients with type 2 diabetes mellitus (T2DM) in insulin self-titration (ie, self-adjusting insulin dose according to daily blood glucose levels). Computer-assisted insulin self-titration systems mainly focus on helping patients overcome barriers related to the cognitive components of insulin titration. Yet other (eg, psychological or physical) barriers could still impede effective use of such systems. Objective: Our primary aim was to identify experiences with and barriers to self-monitoring of blood glucose, insulin injection, and insulin titration among patients with T2DM. Our research team developed a computer-assisted insulin self-titration system, called PANDIT. The secondary aim of this study was to evaluate patients' perceptions of computer-assisted insulin self-titration. We included patients who used PANDIT in a 4-week pilot study as well as patients who had never used such a system. Methods: In-depth, semi-structured interviews were conducted individually with patients on insulin therapy who were randomly recruited from a university hospital and surrounding general practices in the Netherlands. The interviews were transcribed verbatim and analyzed qualitatively. To classify the textual remarks, we created a codebook during the analysis, in a bottom-up and iterative fashion. To support examination of the final coded data, we used three theories from the field of health psychology and the integrated model of user satisfaction and technology acceptance by Wixom and Todd. Results: When starting insulin therapy, some patients feared a lifelong commitment to insulin therapy and disease progression. Also, many barriers arose when implementing insulin therapy (eg, some patients were embarrassed to inject insulin in public). Furthermore, patients had difficulties increasing the insulin dose because they fear hypoglycemia, they associate higher insulin doses with disease progression, and some were ignorant of treatment targets. Patients who never used a computer-assisted insulin self-titration system felt they had enough knowledge to know when their insulin should be adjusted, but still believed that the system advice would be useful to confirm their reasoning. Furthermore, the time and effort saved with automated insulin advice was considered an advantage. Patients who had used PANDIT found the system useful if their glycemic regulation improved. Nevertheless, for some patients, the absence of personal contact with their caregiver was a drawback. While guidelines state that adjustment of basal insulin dose based on fasting plasma glucose values is sufficient, both patients who had and those who had not used PANDIT felt that such a system should take more patient data into consideration, such as lifestyle and diet factors. Conclusions: Patients encounter multiple obstacles when implementing insulin therapy. Computer-assisted insulin self-titration can increase patient awareness of treatment targets and increase their confidence in self-adjusting the insulin dose. Nevertheless, some barriers may still exist when using computer-assisted titration systems and these systems could also introduce new barriers. ", doi="10.2196/jmir.3198", url="http://www.jmir.org/2014/10/e235/", url="http://www.ncbi.nlm.nih.gov/pubmed/25340869" } @Article{info:doi/10.2196/jmir.3341, author="Fiksdal, S. Alexander and Kumbamu, Ashok and Jadhav, S. Ashutosh and Cocos, Cristian and Nelsen, A. Laurie and Pathak, Jyotishman and McCormick, B. Jennifer", title="Evaluating the Process of Online Health Information Searching: A Qualitative Approach to Exploring Consumer Perspectives", journal="J Med Internet Res", year="2014", month="Oct", day="07", volume="16", number="10", pages="e224", keywords="Internet", keywords="information seeking behavior", keywords="consumer health information", keywords="qualitative research", abstract="Background: The Internet is a common resource that patients and consumers use to access health-related information. Multiple practical, cultural, and socioeconomic factors influence why, when, and how people utilize this tool. Improving the delivery of health-related information necessitates a thorough understanding of users' searching-related needs, preferences, and experiences. Although a wide body of quantitative research examining search behavior exists, qualitative approaches have been under-utilized and provide unique perspectives that may prove useful in improving the delivery of health information over the Internet. Objective: We conducted this study to gain a deeper understanding of online health-searching behavior in order to inform future developments of personalizing information searching and content delivery. Methods: We completed three focus groups with adult residents of Olmsted County, Minnesota, which explored perceptions of online health information searching. Participants were recruited through flyers and classifieds advertisements posted throughout the community. We audio-recorded and transcribed all focus groups, and analyzed data using standard qualitative methods. Results: Almost all participants reported using the Internet to gather health information. They described a common experience of searching, filtering, and comparing results in order to obtain information relevant to their intended search target. Information saturation and fatigue were cited as main reasons for terminating searching. This information was often used as a resource to enhance their interactions with health care providers. Conclusions: Many participants viewed the Internet as a valuable tool for finding health information in order to support their existing health care resources. Although the Internet is a preferred source of health information, challenges persist in streamlining the search process. Content providers should continue to develop new strategies and technologies aimed at accommodating diverse populations, vocabularies, and health information needs. ", doi="10.2196/jmir.3341", url="http://www.jmir.org/2014/10/e224/", url="http://www.ncbi.nlm.nih.gov/pubmed/25348028" } @Article{info:doi/10.2196/jmir.3146, author="Neufingerl, Nicole and Cobain, R. Mark and Newson, S. Rachel", title="Web-Based Self-Assessment Health Tools: Who Are the Users and What Is the Impact of Missing Input Information?", journal="J Med Internet Res", year="2014", month="Sep", day="26", volume="16", number="9", pages="e215", keywords="cardiovascular disease", keywords="risk assessment", keywords="Web applications", keywords="consumer health information", keywords="preventive health services", keywords="cholesterol", keywords="blood pressure", abstract="Background: Web-based health applications, such as self-assessment tools, can aid in the early detection and prevention of diseases. However, there are concerns as to whether such tools actually reach users with elevated disease risk (where prevention efforts are still viable), and whether inaccurate or missing information on risk factors may lead to incorrect evaluations. Objective: This study aimed to evaluate (1) evaluate whether a Web-based cardiovascular disease (CVD) risk communication tool (Heart Age tool) was reaching users at risk of developing CVD, (2) the impact of awareness of total cholesterol (TC), HDL-cholesterol (HDL-C), and systolic blood pressure (SBP) values on the risk estimates, and (3) the key predictors of awareness and reporting of physiological risk factors. Methods: Heart Age is a tool available via a free open access website. Data from 2,744,091 first-time users aged 21-80 years with no prior heart disease were collected from 13 countries in 2009-2011. Users self-reported demographic and CVD risk factor information. Based on these data, an individual's 10-year CVD risk was calculated according to Framingham CVD risk models and translated into a Heart Age. This is the age for which the individual's reported CVD risk would be considered ``normal''. Depending on the availability of known TC, HDL-C, and SBP values, different algorithms were applied. The impact of awareness of TC, HDL-C, and SBP values on Heart Age was determined using a subsample that had complete risk factor information. Results: Heart Age users (N=2,744,091) were mostly in their 20s (22.76\%) and 40s (23.99\%), female (56.03\%), had multiple (mean 2.9, SD 1.4) risk factors, and a Heart Age exceeding their chronological age (mean 4.00, SD 6.43 years). The proportion of users unaware of their TC, HDL-C, or SBP values was high (77.47\%, 93.03\%, and 46.55\% respectively). Lacking awareness of physiological risk factor values led to overestimation of Heart Age by an average 2.1-4.5 years depending on the (combination of) unknown risk factors (P<.001). Overestimation was greater in women than in men, increased with age, and decreased with increasing CVD risk. Awareness of physiological risk factor values was higher among diabetics (OR 1.47, 95\% CI 1.46-1.50 and OR 1.74, 95\% CI 1.71-1.77), those with family history of CVD (OR 1.22, 95\% CI 1.22-1.23 and OR 1.43, 95\% CI 1.42-1.44), and increased with age (OR 1.05, 95\% CI 1.05-1.05 and OR 1.07, 95\% CI 1.07-1.07). It was lower in smokers (OR 0.52, 95\% CI 0.52-0.53 and OR 0.71, 95\% CI 0.71-0.72) and decreased with increasing Heart Age (OR 0.92, 95\% CI 0.92-0.92 and OR 0.97, 95\% CI 0.96-0.97) (all P<.001). Conclusions: The Heart Age tool reached users with low-moderate CVD risk, but with multiple elevated CVD risk factors, and a heart age higher than their real age. This highlights that Web-based self-assessment health tools can be a useful means to interact with people who are at risk of developing disease, but where interventions are still viable. Missing information in the self-assessment health tools was shown to result in inaccurate self-health assessments. Subgroups at risk of not knowing their risk factors are identifiable and should be specifically targeted in health awareness programs. ", doi="10.2196/jmir.3146", url="http://www.jmir.org/2014/9/e215/", url="http://www.ncbi.nlm.nih.gov/pubmed/25261155" } @Article{info:doi/10.2196/jmir.3194, author="Helve, Otto", title="A Medical Consultation Service on Facebook: Descriptive Analysis of Questions Answered", journal="J Med Internet Res", year="2014", month="Sep", day="04", volume="16", number="9", pages="e202", keywords="social media", keywords="Internet", keywords="health information", keywords="health promotion", abstract="Background: Social media is used increasingly by the general public to access health information. However, a lack of models for health information distribution limits the presence of publicly funded services on social media sites. Objective: The goal of the study was to present a model for delivering child health information to parents through a social media site. Methods: A Facebook site was launched for 11 months based on a question-and-answer service produced by a pediatrician and open to Facebook users over 18 years old. If the answer did not include a further referral to a health care service provider, the question was considered comprehensively answered. The site was funded by a pharmaceutical company, and it included an advertisement of a pharmaceutical product for children's fever and pain. Results: During the study, 768 questions were submitted: an average of 69.8 (SD 31.7) per month. There were 245,533 independent Facebook users on the site, with an average of 727.0 (SD 2280.6) per day. Infections were the most common theme in questions (355/768, 46.2\%). Questions were more likely to be comprehensively answered if they were related to infections (279/355, 78.6\%) than questions related to non-infectious symptoms (265/423, 64.2\%, P=.003). Conclusions: On this site aimed at parents of small children, personalized answers were an effective way of delivering information. The service is likely to have reduced the need for further contacts with a health care service provider in more than half of the cases. The site could serve as a model for publicly funded health information distribution. ", doi="10.2196/jmir.3194", url="http://www.jmir.org/2014/9/e202/", url="http://www.ncbi.nlm.nih.gov/pubmed/25189182" } @Article{info:doi/10.2196/jmir.3289, author="Kowalski, Christoph and Kahana, Eva and Kuhr, Kathrin and Ansmann, Lena and Pfaff, Holger", title="Changes Over Time in the Utilization of Disease-Related Internet Information in Newly Diagnosed Breast Cancer Patients 2007 to 2013", journal="J Med Internet Res", year="2014", month="Aug", day="26", volume="16", number="8", pages="e195", keywords="disease-related Internet information", keywords="digital divide", keywords="multilevel analysis", keywords="breast neoplasms", keywords="hospital differences", abstract="Background: As the number of people with Internet access rises, so does the use of the Internet as a potentially valuable source for health information. Insight into patient use of this information and its correlates over time may reveal changes in the digital divide based on patient age and education. Existing research has focused on patient characteristics that predict Internet information use and research on treatment context is rare. Objective: This study aims to (1) present data on the proportion of newly diagnosed breast cancer patients treated in German breast centers from 2007 to 2013 who used the Internet for information on their disease, (2) look into correlations between Internet utilization and sociodemographic characteristics and if these change over time, and (3) determine if use of Internet information varies with the hospitals in which the patients were initially treated. Methods: Data about utilization of the Internet for breast cancer--specific health information was obtained in a postal survey of breast cancer patients that is conducted annually in Germany with a steady response rate of 87\% of consenting patients. Data from the survey were combined with data obtained by hospital personnel (eg, cancer stage and type of surgery). Data from 27,491 patients from 7 consecutive annual surveys were analyzed for this paper using multilevel regression modeling to account for clustering of patients in specific hospitals. Results: Breast cancer patients seeking disease-specific information on the Internet increased significantly from 26.96\% (853/3164) in 2007 to 37.21\% (1485/3991) in 2013. Similar patterns of demographic correlates were found for all 7 cohorts. Older patients (?70 years) and patients with <10 years of formal education were less likely to use the Internet for information on topics related to their disease. Internet use was significantly higher among privately insured patients and patients living with a partner. Higher cancer stage and a foreign native language were associated with decreased use in the overall model. Type of surgery was not found to be associated with Internet use in the multivariable models. Intraclass correlation coefficients were small (0.00-0.03) suggesting only a small contribution of the hospital to the patients' decision to use Internet information. There was no clear indication of a decreased digital divide based on age and education. Conclusions: Use of the Internet for health information is on the rise among breast cancer patients. The strong age- and education-related differences raise the question of how relevant information can be adequately provided to all patients, especially to those with limited education, older age, and living without a partner. ", doi="10.2196/jmir.3289", url="http://www.jmir.org/2014/8/e195/", url="http://www.ncbi.nlm.nih.gov/pubmed/25158744" } @Article{info:doi/10.2196/med20.3213, author="Se{\c{c}}kin, G{\"u}l", title="Health Information on the Web and Consumers' Perspectives on Health Professionals' Responses to Information Exchange", journal="Med 2.0", year="2014", month="Jul", day="08", volume="3", number="2", pages="e4", keywords="health communication", keywords="Internet", keywords="information", keywords="patient-physician relationship", abstract="Background: Health information technology, which is sometimes referred to as informaticization of medicine, is changing the extent to which patients become competent producers of their own health by enabling them access to health information anytime and anywhere. Objective: This research provides preliminary information on users' perceptions of the extent to which use of the Internet for health information impacts medical encounters. We specifically explored the following questions: (1) To what extent perceptions of positive or negative changes in medical encounters are associated with sociodemographic background of online health information seekers, and how often the Internet information is discussed with providers? (2) To what extent is there an association between perceived changes in medical encounters and frequency of referring to the Internet during medical encounters? (3) To what extent is there an association between sociodemographic background of online health information users and frequency of discussing of the Internet information with providers? Methods: The data for this study was derived from a national sampling of online health and medical information users who participated in the Study of Health and Medical Information in Cyberspace---Survey of User Perceptions (N=710). This study used a nationally representative online research panel of the US adults maintained by the Knowledge Networks. Analysis of variance (ANOVA), chi-square, and t tests were performed to examine the data. Results: Although Internet sources allow people the opportunity to gather health or medical information, discussion of this information was not a very common activity. It is noteworthy that half of the sample never or rarely discussed health/medical information obtained from Internet sources with health professionals. Chi-square analyses revealed that discussion of online health information with providers were associated with education, income, and marital status. We also found that discussion of the Internet information mostly promotes better physician-patient interactions. Analyses with post-hoc tests identified that perceived changes in medical encounters were associated with age, education, and income. However, 9.1\% (64/703) of our respondents strongly agreed that the interactions with their providers have been strained. T test analyses showed that marital status, race, and gender were not significant. Conclusions: Embracing new technologies, and adapting to changing roles and relationships in delivery of medical care are critical to effective delivery of patient-centered care. Health professionals could also guide patients on how to evaluate information and where to access to reliable and accurate information. ", doi="10.2196/med20.3213", url="http://www.medicine20.com/2014/2/e4/", url="http://www.ncbi.nlm.nih.gov/pubmed/25075248" } @Article{info:doi/10.2196/jmir.3186, author="Jadhav, Ashutosh and Andrews, Donna and Fiksdal, Alexander and Kumbamu, Ashok and McCormick, B. Jennifer and Misitano, Andrew and Nelsen, Laurie and Ryu, Euijung and Sheth, Amit and Wu, Stephen and Pathak, Jyotishman", title="Comparative Analysis of Online Health Queries Originating From Personal Computers and Smart Devices on a Consumer Health Information Portal", journal="J Med Internet Res", year="2014", month="Jul", day="04", volume="16", number="7", pages="e160", keywords="online health information seeking", keywords="health information search", keywords="eHealth", keywords="mHealth", keywords="search query analysis", keywords="health search log", keywords="mobile health", keywords="health seeking behavior", abstract="Background: The number of people using the Internet and mobile/smart devices for health information seeking is increasing rapidly. Although the user experience for online health information seeking varies with the device used, for example, smart devices (SDs) like smartphones/tablets versus personal computers (PCs) like desktops/laptops, very few studies have investigated how online health information seeking behavior (OHISB) may differ by device. Objective: The objective of this study is to examine differences in OHISB between PCs and SDs through a comparative analysis of large-scale health search queries submitted through Web search engines from both types of devices. Methods: Using the Web analytics tool, IBM NetInsight OnDemand, and based on the type of devices used (PCs or SDs), we obtained the most frequent health search queries between June 2011 and May 2013 that were submitted on Web search engines and directed users to the Mayo Clinic's consumer health information website. We performed analyses on ``Queries with considering repetition counts (QwR)'' and ``Queries without considering repetition counts (QwoR)''. The dataset contains (1) 2.74 million and 3.94 million QwoR, respectively for PCs and SDs, and (2) more than 100 million QwR for both PCs and SDs. We analyzed structural properties of the queries (length of the search queries, usage of query operators and special characters in health queries), types of search queries (keyword-based, wh-questions, yes/no questions), categorization of the queries based on health categories and information mentioned in the queries (gender, age-groups, temporal references), misspellings in the health queries, and the linguistic structure of the health queries. Results: Query strings used for health information searching via PCs and SDs differ by almost 50\%. The most searched health categories are ``Symptoms'' (1 in 3 search queries), ``Causes'', and ``Treatments \& Drugs''. The distribution of search queries for different health categories differs with the device used for the search. Health queries tend to be longer and more specific than general search queries. Health queries from SDs are longer and have slightly fewer spelling mistakes than those from PCs. Users specify words related to women and children more often than that of men and any other age group. Most of the health queries are formulated using keywords; the second-most common are wh- and yes/no questions. Users ask more health questions using SDs than PCs. Almost all health queries have at least one noun and health queries from SDs are more descriptive than those from PCs. Conclusions: This study is a large-scale comparative analysis of health search queries to understand the effects of device type (PCs vs SDs) used on OHISB. The study indicates that the device used for online health information search plays an important role in shaping how health information searches by consumers and patients are executed. ", doi="10.2196/jmir.3186", url="http://www.jmir.org/2014/7/e160/", url="http://www.ncbi.nlm.nih.gov/pubmed/25000537" } @Article{info:doi/10.2196/jmir.3122, author="Bidmon, Sonja and Terlutter, Ralf and R{\"o}ttl, Johanna", title="What Explains Usage of Mobile Physician-Rating Apps? Results From a Web-Based Questionnaire", journal="J Med Internet Res", year="2014", month="Jun", day="11", volume="16", number="6", pages="e148", keywords="physician-rating apps", keywords="physician-rating websites", keywords="sociodemographic variables", keywords="psychographic variables", keywords="digital literacy", keywords="TAM", abstract="Background: Consumers are increasingly accessing health-related information via mobile devices. Recently, several apps to rate and locate physicians have been released in the United States and Germany. However, knowledge about what kinds of variables explain usage of mobile physician-rating apps is still lacking. Objective: This study analyzes factors influencing the adoption of and willingness to pay for mobile physician-rating apps. A structural equation model was developed based on the Technology Acceptance Model and the literature on health-related information searches and usage of mobile apps. Relationships in the model were analyzed for moderating effects of physician-rating website (PRW) usage. Methods: A total of 1006 randomly selected German patients who had visited a general practitioner at least once in the 3 months before the beginning of the survey were randomly selected and surveyed. A total of 958 usable questionnaires were analyzed by partial least squares path modeling and moderator analyses. Results: The suggested model yielded a high model fit. We found that perceived ease of use (PEOU) of the Internet to gain health-related information, the sociodemographic variables age and gender, and the psychographic variables digital literacy, feelings about the Internet and other Web-based applications in general, patients' value of health-related knowledgeability, as well as the information-seeking behavior variables regarding the amount of daily private Internet use for health-related information, frequency of using apps for health-related information in the past, and attitude toward PRWs significantly affected the adoption of mobile physician-rating apps. The sociodemographic variable age, but not gender, and the psychographic variables feelings about the Internet and other Web-based applications in general and patients' value of health-related knowledgeability, but not digital literacy, were significant predictors of willingness to pay. Frequency of using apps for health-related information in the past and attitude toward PRWs, but not the amount of daily Internet use for health-related information, were significant predictors of willingness to pay. The perceived usefulness of the Internet to gain health-related information and the amount of daily Internet use in general did not have any significant effect on both of the endogenous variables. The moderation analysis with the group comparisons for users and nonusers of PRWs revealed that the attitude toward PRWs had significantly more impact on the adoption and willingness to pay for mobile physician-rating apps in the nonuser group. Conclusions: Important variables that contribute to the adoption of a mobile physician-rating app and the willingness to pay for it were identified. The results of this study are important for researchers because they can provide important insights about the variables that influence the acceptance of apps that allow for ratings of physicians. They are also useful for creators of mobile physician-rating apps because they can help tailor mobile physician-rating apps to the consumers' characteristics and needs. ", doi="10.2196/jmir.3122", url="http://www.jmir.org/2014/6/e148/", url="http://www.ncbi.nlm.nih.gov/pubmed/24918859" } @Article{info:doi/10.2196/jmir.3385, author="Kraschnewski, L. Jennifer and Chuang, H. Cynthia and Poole, S. Erika and Peyton, Tamara and Blubaugh, Ian and Pauli, Jaimey and Feher, Alyssa and Reddy, Madhu", title="Paging ``Dr. Google'': Does Technology Fill the Gap Created by the Prenatal Care Visit Structure? Qualitative Focus Group Study With Pregnant Women ", journal="J Med Internet Res", year="2014", month="Jun", day="03", volume="16", number="6", pages="e147", keywords="qualitative research", keywords="prenatal care", keywords="pregnancy resources", keywords="Women, Infants, and Children Program", keywords="mhealth", keywords="mobile phones", keywords="smartphones", keywords="Internet", keywords="patient education", keywords="consumer health informatics", abstract="Background: The prenatal care visit structure has changed little over the past century despite the rapid evolution of technology including Internet and mobile phones. Little is known about how pregnant women engage with technologies and the interface between these tools and medical care, especially for women of lower socioeconomic status. Objective: We sought to understand how women use technology during pregnancy through a qualitative study with women enrolled in the Women, Infants, and Children (WIC) program. Methods: We recruited pregnant women ages 18 and older who owned a smartphone, at a WIC clinic in central Pennsylvania. The focus group guide included questions about women's current pregnancy, their sources of information, and whether they used technology for pregnancy-related information. Sessions were audiotaped and transcribed. Three members of the research team independently analyzed each transcript, using a thematic analysis approach. Themes related to the topics discussed were identified, for which there was full agreement. Results: Four focus groups were conducted with a total of 17 women. Three major themes emerged as follows. First, the prenatal visit structure is not patient-centered, with the first visit perceived as occurring too late and with too few visits early in pregnancy when women have the most questions for their prenatal care providers. Unfortunately, the educational materials women received during prenatal care were viewed as unhelpful. Second, women turn to technology (eg, Google, smartphone applications) to fill their knowledge gaps. Turning to technology was viewed to be a generational approach. Finally, women reported that technology, although frequently used, has limitations. Conclusions: The results of this qualitative research suggest that the current prenatal care visit structure is not patient-centered in that it does not allow women to seek advice when they want it most. A generational shift seems to have occurred, resulting in pregnant women in our study turning to the Internet and smartphones to fill this gap, which requires significant skills to navigate for useful information. Future steps may include developing interventions to help health care providers assist patients early in pregnancy to seek the information they want and to become better consumers of Internet-based pregnancy resources. ", doi="10.2196/jmir.3385", url="http://www.jmir.org/2014/6/e147/", url="http://www.ncbi.nlm.nih.gov/pubmed/24892583" } @Article{info:doi/10.2196/jmir.3257, author="Edwards, Louisa and Thomas, Clare and Gregory, Alison and Yardley, Lucy and O'Cathain, Alicia and Montgomery, A. Alan and Salisbury, Chris", title="Are People With Chronic Diseases Interested in Using Telehealth? A Cross-Sectional Postal Survey", journal="J Med Internet Res", year="2014", month="May", day="08", volume="16", number="5", pages="e123", keywords="telehealth", keywords="Internet", keywords="technology", keywords="cardiovascular diseases", keywords="depression", keywords="mental health", keywords="chronic disease", keywords="survey methodology", keywords="patient acceptance of health care", abstract="Background: There is growing interest in telehealth---the use of technology to support the remote delivery of health care and promote self-management---as a potential alternative to face-to-face care for patients with chronic diseases. However, little is known about what precipitates interest in the use of telehealth among these patients. Objective: This survey forms part of a research program to develop and evaluate a telehealth intervention for patients with two exemplar chronic diseases: depression and raised cardiovascular disease (CVD) risk. The survey was designed to explore the key factors that influence interest in using telehealth in these patient groups. Methods: Thirty-four general practices were recruited from two different regions within England. Practice records were searched for patients with (1) depression (aged 18+ years) or (2) 10-year risk of CVD ?20\% and at least one modifiable risk factor (aged 40-74 years). Within each general practice, 54 patients in each chronic disease group were randomly selected to receive a postal questionnaire. Questions assessed five key constructs: sociodemographics, health needs, difficulties accessing health care, technology-related factors (availability, confidence using technology, perceived benefits and drawbacks of telehealth), and satisfaction with prior use of telehealth. Respondents also rated their interest in using different technologies for telehealth (phone, email and Internet, or social media). Relationships between the key constructs and interest in using the three mediums of telehealth were examined using multivariable regression models. Results: Of the 3329 patients who were sent a study questionnaire, 44.40\% completed it (872/1740, 50.11\% CVD risk; 606/1589, 38.14\% depression). Overall, there was moderate interest in using phone-based (854/1423, 60.01\%) and email/Internet-based (816/1425, 57.26\%) telehealth, but very little interest in social media (243/1430, 16.99\%). After adjusting for health needs, access difficulties, technology-related factors, and prior use of telehealth, interest in telehealth had largely no association with sociodemographic variables. For both patient groups and for each of the three technology mediums, the most important constructs related to interest in telehealth were having the confidence to use the associated technology, as well as perceiving greater advantages and fewer disadvantages from using telehealth. To illustrate, greater confidence using phone technologies (b=.16, 95\% CI 0.002-0.33), while also perceiving more benefits (b=.31, 95\% CI 0.21-0.40) and fewer drawbacks (b=-.23, 95\% CI -0.28 to -0.17) to using telehealth were associated with more interest in using phone-based telehealth technologies for patients with depression. Conclusions: There is widespread interest in using phone-based and email/Internet-based telehealth among patients with chronic diseases, regardless of their health status, access difficulties, age, or many other sociodemographic factors. This interest could be increased by helping patients gain confidence using technologies and through highlighting benefits and addressing concerns about telehealth. While the same pattern exists for social media telehealth, interest in using these technologies is minimal. ", doi="10.2196/jmir.3257", url="http://www.jmir.org/2014/5/e123/", url="http://www.ncbi.nlm.nih.gov/pubmed/24811914" } @Article{info:doi/10.2196/jmir.3190, author="Bonner, Carissa and Jansen, Jesse and Newell, R. Ben and Irwig, Les and Glasziou, Paul and Doust, Jenny and Dhillon, Haryana and McCaffery, Kirsten", title="I Don't Believe It, But I'd Better Do Something About It: Patient Experiences of Online Heart Age Risk Calculators", journal="J Med Internet Res", year="2014", month="May", day="05", volume="16", number="5", pages="e120", keywords="cardiovascular disease", keywords="prevention", keywords="risk calculator", keywords="risk assessment", keywords="risk perception", keywords="lifestyle", keywords="behavior change", abstract="Background: Health risk calculators are widely available on the Internet, including cardiovascular disease (CVD) risk calculators that estimate the probability of a heart attack, stroke, or death over a 5- or 10-year period. Some calculators convert this probability to ``heart age'', where a heart age older than current age indicates modifiable risk factors. These calculators may impact patient decision making about CVD risk management with or without clinician involvement, but little is known about how patients use them. Previous studies have not investigated patient understanding of heart age compared to 5-year percentage risk, or the best way to present heart age. Objective: This study aimed to investigate patient experiences and understanding of online heart age calculators that use different verbal, numerical, and graphical formats, based on 5- and 10-year Framingham risk equations used in clinical practice guidelines around the world. Methods: General practitioners in New South Wales, Australia, recruited 26 patients with CVD/lifestyle risk factors who were not taking cholesterol or blood pressure-lowering medication in 2012. Participants were asked to ``think aloud'' while using two heart age calculators in random order, with semi-structured interviews before and after. Transcribed audio recordings were coded and a framework analysis method was used. Results: Risk factor questions were often misinterpreted, reducing the accuracy of the calculators. Participants perceived older heart age as confronting and younger heart age as positive but unrealistic. Unexpected or contradictory results (eg, low percentage risk but older heart age) led participants to question the credibility of the calculators. Reasons to discredit the results included the absence of relevant lifestyle questions and impact of corporate sponsorship. However, the calculators prompted participants to consider lifestyle changes irrespective of whether they received younger, same, or older heart age results. Conclusions: Online heart age calculators can be misunderstood and disregarded if they produce unexpected or contradictory results, but they may still motivate lifestyle changes. Future research should investigate both the benefits and harms of communicating risk in this way, and how to increase the reliability and credibility of online health risk calculators. ", doi="10.2196/jmir.3190", url="http://www.jmir.org/2014/5/e120/", url="http://www.ncbi.nlm.nih.gov/pubmed/24797339" } @Article{info:doi/10.2196/jmir.3145, author="Terlutter, Ralf and Bidmon, Sonja and R{\"o}ttl, Johanna", title="Who Uses Physician-Rating Websites? Differences in Sociodemographic Variables, Psychographic Variables, and Health Status of Users and Nonusers of Physician-Rating Websites", journal="J Med Internet Res", year="2014", month="Mar", day="31", volume="16", number="3", pages="e97", keywords="physician-rating websites", keywords="sociodemographic variables", keywords="psychographic variables", keywords="digital literacy", abstract="Background: The number of physician-rating websites (PRWs) is rising rapidly, but usage is still poor. So far, there has been little discussion about what kind of variables influence usage of PRWs. Objective: We focused on sociodemographic variables, psychographic variables, and health status of PRW users and nonusers. Methods: An online survey of 1006 randomly selected German patients was conducted in September 2012. We analyzed the patients' knowledge and use of online PRWs. We also analyzed the impact of sociodemographic variables (gender, age, and education), psychographic variables (eg, feelings toward the Internet, digital literacy), and health status on use or nonuse as well as the judgment of and behavior intentions toward PRWs. The survey instrument was based on existing literature and was guided by several research questions. Results: A total of 29.3\% (289/986) of the sample knew of a PRW and 26.1\% (257/986) had already used a PRW. Younger people were more prone than older ones to use PRWs (t967=2.27, P=.02). Women used them more than men ($\chi$21=9.4, P=.002), the more highly educated more than less educated people ($\chi$24=19.7, P=.001), and people with chronic diseases more than people without ($\chi$21=5.6, P=.02). No differences were found between users and nonusers in their daily private Internet use and in their use of the Internet for health-related information. Users had more positive feelings about the Internet and other Web-based applications in general (t489=3.07, P=.002) than nonusers, and they had higher digital literacy (t520=4.20, P<.001). Users ascribed higher usefulness to PRWs than nonusers (t612=11.61, P<.001) and users trusted information on PRWs to a greater degree than nonusers (t559=11.48, P<.001). Users were also more likely to rate a physician on a PRW in the future (t367=7.63, P<.001) and to use a PRW in the future (t619=15.01, P<.001). The results of 2 binary logistic regression analyses demonstrated that sociodemographic variables (gender, age, education) and health status alone did not predict whether persons were prone to use PRWs or not. Adding psychographic variables and information-seeking behavior variables to the binary logistic regression analyses led to a satisfying fit of the model and revealed that higher education, poorer health status, higher digital literacy (at the 10\% level of significance), lower importance of family and pharmacist for health-related information, higher trust in information on PRWs, and higher appraisal of usefulness of PRWs served as significant predictors for usage of PRWs. Conclusions: Sociodemographic variables alone do not sufficiently predict use or nonuse of PRWs; specific psychographic variables and health status need to be taken into account. The results can help designers of PRWs to better tailor their product to specific target groups, which may increase use of PRWs in the future. ", doi="10.2196/jmir.3145", url="http://www.jmir.org/2014/3/e97/", url="http://www.ncbi.nlm.nih.gov/pubmed/24686918" } @Article{info:doi/10.2196/jmir.2838, author="Koh, Sukjin and Gordon, S. Andrew and Wienberg, Christopher and Sood, O. Sara and Morley, Stephanie and Burke, M. Deborah", title="Stroke Experiences in Weblogs: A Feasibility Study of Sex Differences", journal="J Med Internet Res", year="2014", month="Mar", day="19", volume="16", number="3", pages="e84", keywords="cerebral stroke", keywords="signs and symptoms", keywords="sex differences", keywords="Internet", keywords="blogging", abstract="Background: Research on cerebral stroke symptoms using hospital records has reported that women experience more nontraditional symptoms of stroke (eg, mental status change, pain) than men do. This is an important issue because nontraditional symptoms may delay the decision to get medical assistance and increase the difficulty of correct diagnosis. In the present study, we investigate sex differences in the stroke experience as described in stories on weblogs. Objective: The goal of this study was to investigate the feasibility of using the Internet as a source of data for basic research on stroke experiences. Methods: Stroke experiences described in blogs were identified by using StoryUpgrade, a program that searches blog posts using a fictional prototype story. In this study, the prototype story was a description of a stroke experience. Retrieved stories coded by the researchers as relevant were used to update the search query and retrieve more stories using relevance feedback. Stories were coded for first- or third-person narrator, traditional and nontraditional patient symptoms, type of stroke, patient sex and age, delay before seeking medical assistance, and delay at hospital and in treatment. Results: There were 191 relevant stroke stories of which 174 stories reported symptoms (52.3\% female and 47.7\% male patients). There were no sex differences for each traditional or nontraditional stroke symptom by chi-square analysis (all Ps>.05). Type of narrator, however, affected report of traditional and nontraditional symptoms. Female first-person narrators (ie, the patient) were more likely to report mental status change (56.3\%, 27/48) than male first-person narrators (36.4\%, 16/44), a marginally significant effect by logistic regression (P=.056), whereas reports of third-person narrators did not differ for women (27.9\%, 12/43) and men (28.2\%, 11/39) patients. There were more reports of at least 1 nontraditional symptom in the 92 first-person reports (44.6\%, 41/92) than in the 82 third-person reports (25.6\%, 21/82, P=.006). Ischemic or hemorrhagic stroke was reported in 67 and 29 stories, respectively. Nontraditional symptoms varied with stroke type with 1 or more nontraditional symptoms reported for 79.3\% (23/29) of hemorrhagic stroke patients and 53.7\% (36/67) of ischemic stroke patients (P=.001). Conclusions: The results replicate previous findings based on hospital interview data supporting the reliability of findings from weblogs. New findings include the effect of first- versus third-person narrator on sex differences in the report of nontraditional symptoms. This result suggests that narrator is an important variable to be examined in future studies. A fragmentary data problem limits some conclusions because important information, such as age, was not consistently reported. Age trends strengthen the feasibility of using the Internet for stroke research because older adults have significantly increased their Internet use in recent years. ", doi="10.2196/jmir.2838", url="http://www.jmir.org/2014/3/e84/", url="http://www.ncbi.nlm.nih.gov/pubmed/24647327" } @Article{info:doi/10.2196/jmir.2895, author="Witteman, O. Holly and Fuhrel-Forbis, Andrea and Wijeysundera, C. Harindra and Exe, Nicole and Dickson, Mark and Holtzman, Lisa and Kahn, C. Valerie and Zikmund-Fisher, J. Brian", title="Animated Randomness, Avatars, Movement, and Personalization in Risk Graphics", journal="J Med Internet Res", year="2014", month="Mar", day="18", volume="16", number="3", pages="e80", keywords="risk graphics", keywords="health communication", keywords="cardiovascular disease", keywords="animation", keywords="avatar", keywords="pictograph", keywords="icon array", abstract="Background: Risk communication involves conveying two inherently difficult concepts about the nature of risk: the underlying random distribution of outcomes and how a population-based proportion applies to an individual. Objective: The objective of this study was to test whether 4 design factors in icon arrays---animated random dispersal of risk events, avatars to represent an individual, personalization (operationalized as choosing the avatar's color), and a moving avatar---might help convey randomness and how a given risk applies to an individual, thereby better aligning risk perceptions with risk estimates. Methods: A diverse sample of 3630 adults with no previous heart disease or stroke completed an online nested factorial experiment in which they entered personal health data into a risk calculator that estimated 10-year risk of cardiovascular disease based on a robust and validated model. We randomly assigned them to view their results in 1 of 10 risk graphics that used different combinations of the 4 design factors. We measured participants' risk perceptions as our primary outcome, as well as behavioral intentions and recall of the risk estimate. We also assessed subjective numeracy, whether or not participants knew anyone who had died of cardiovascular causes, and whether or not they knew their blood pressure and cholesterol as potential moderators. Results: Animated randomness was associated with better alignment between risk estimates and risk perceptions (F1,3576=6.12, P=.01); however, it also led to lower scores on healthy lifestyle intentions (F1,3572=11.1, P<.001). Using an avatar increased risk perceptions overall (F1,3576=4.61, P=.03) and most significantly increased risk perceptions among those who did not know a particular person who had experienced the grave outcomes of cardiovascular disease (F1,3576=5.88, P=.02). Using an avatar also better aligned actual risk estimates with intentions to see a doctor (F1,3556=6.38, P=.01). No design factors had main effects on recall, but animated randomness was associated with better recall for those at lower risk and worse recall for those at higher risk (F1,3544=7.06, P=.01). Conclusions: Animated randomness may help people better understand the random nature of risk. However, in the context of cardiovascular risk, such understanding may result in lower healthy lifestyle intentions. Therefore, whether or not to display randomness may depend on whether one's goal is to persuade or to inform. Avatars show promise for helping people grasp how population-based statistics map to an individual case. ", doi="10.2196/jmir.2895", url="http://www.jmir.org/2014/3/e80/", url="http://www.ncbi.nlm.nih.gov/pubmed/24642037" } @Article{info:doi/10.2196/jmir.2812, author="Capurro, Daniel and Ganzinger, Matthias and Perez-Lu, Jose and Knaup, Petra", title="Effectiveness of eHealth Interventions and Information Needs in Palliative Care: A Systematic Literature Review", journal="J Med Internet Res", year="2014", month="Mar", day="07", volume="16", number="3", pages="e72", keywords="palliative Care", keywords="eHealth", keywords="systematic review", abstract="Background: One of the key components in palliative care is communication. eHealth technologies can be an effective way to support communications among participants in the process of palliative care. However, it is unclear to what extent information technology has been established in this field. Objective: Our goal was to systematically identify studies and analyze the effectiveness of eHealth interventions in palliative care and the information needs of people involved in the palliative care process. Methods: We conducted a systematic literature search using PubMed, Embase, and LILACS according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We collected and analyzed quantitative and qualitative data regarding effectiveness of eHealth interventions and users' information needs in palliative care. Results: Our search returned a total of 240 articles, 17 of which met our inclusion criteria. We found no randomized controlled trial studying the effects of eHealth interventions in palliative care. Studies tended to be observational, noncontrolled studies, and a few quasi-experimental studies. Overall there was great heterogeneity in the types of interventions and outcome assessments; some studies reported some improvement on quality of care, documentation effort, cost, and communications. The most frequently reported information need concerned pain management. Conclusions: There is limited evidence around the effectiveness of eHealth interventions for palliative care patients, caregivers, and health care professionals. Focused research on information needs and high-quality clinical trials to assess their effectiveness are needed. ", doi="10.2196/jmir.2812", url="http://www.jmir.org/2014/3/e72/", url="http://www.ncbi.nlm.nih.gov/pubmed/24610324" } @Article{info:doi/10.2196/resprot.2584, author="Liu, Shuo-Fang and Lee, Yann-Long", title="A Simple and Reliable Health Monitoring System For Shoulder Health: Proposal", journal="JMIR Res Protoc", year="2014", month="Feb", day="26", volume="3", number="1", pages="e11", keywords="health care service", keywords="network platform", keywords="shoulder health", keywords="scale design", keywords="PHP", abstract="Background: The current health care system is complex and inefficient. A simple and reliable health monitoring system that can help patients perform medical self-diagnosis is seldom readily available. Because the medical system is vast and complex, it has hampered or delayed patients in seeking medical advice or treatment in a timely manner, which may potentially affect the patient's chances of recovery, especially those with severe sicknesses such as cancer, and heart disease. Objective: The purpose of this paper is to propose a methodology in designing a simple, low cost, Internet-based health-screening platform. Methods: This health-screening platform will enable patients to perform medical self-diagnosis over the Internet. Historical data has shown the importance of early detection to ensure patients receive proper treatment and speedy recovery. Results: The platform is designed with special emphasis on the user interface. Standard Web-based user-interface design is adopted so the user feels ease to operate in a familiar Web environment. In addition, graphics such as charts and graphs are used generously to help users visualize and understand the result of the diagnostic. The system is developed using hypertext preprocessor (PHP) programming language. One important feature of this system platform is that it is built to be a stand-alone platform, which tends to have better user privacy security. The prototype system platform was developed by the National Cheng Kung University Ergonomic and Design Laboratory. Conclusions: The completed prototype of this system platform was submitted to the Taiwan Medical Institute for evaluation. The evaluation of 120 participants showed that this platform system is a highly effective tool in health-screening applications, and has great potential for improving the medical care quality for the general public. ", doi="10.2196/resprot.2584", url="http://www.researchprotocols.org/2014/1/e11/", url="http://www.ncbi.nlm.nih.gov/pubmed/24571980" } @Article{info:doi/10.2196/jmir.3054, author="Huerta, R. Timothy and Hefner, L. Jennifer and Ford, W. Eric and McAlearney, Scheck Ann and Menachemi, Nir", title="Hospital Website Rankings in the United States: Expanding Benchmarks and Standards for Effective Consumer Engagement", journal="J Med Internet Res", year="2014", month="Feb", day="25", volume="16", number="2", pages="e64", keywords="social media", keywords="hospitals", keywords="information services", keywords="communication", keywords="access", keywords="consumer health information", abstract="Background: Passage of the Patient Protection and Affordable Care Act (ACA) increased the roles hospitals and health systems play in care delivery and led to a wave of consolidation of medical groups and hospitals. As such, the traditional patient interaction with an independent medical provider is becoming far less common, replaced by frequent interactions with integrated medical groups and health systems. It is thus increasingly important for these organizations to have an effective social media presence. Moreover, in the age of the informed consumer, patients desire a readily accessible, electronic interface to initiate contact, making a well-designed website and social media strategy critical features of the modern health care organization. Objective: The purpose of this study was to assess the Web presence of hospitals and their health systems on five dimensions: accessibility, content, marketing, technology, and usability. In addition, an overall ranking was calculated to identify the top 100 hospital and health system websites. Methods: A total of 2407 unique Web domains covering 2785 hospital facilities or their parent organizations were identified and matched against the 2009 American Hospital Association (AHA) Annual Survey. This is a four-fold improvement in prior research and represents what the authors believe to be a census assessment of the online presence of US hospitals and their health systems. Each of the five dimensions was investigated with an automated content analysis using a suite of tools. Scores on the dimensions are reported on a range from 0 to 10, with a higher score on any given dimension representing better comparative performance. Rankings on each dimension and an average ranking are provided for the top 100 hospitals. Results: The mean score on the usability dimension, meant to rate overall website quality, was 5.16 (SD 1.43), with the highest score of 8 shared by only 5 hospitals. Mean scores on other dimensions were between 4.43 (SD 2.19) and 6.49 (SD 0.96). Based on these scores, rank order calculations for the top 100 websites are presented. Additionally, a link to raw data, including AHA ID, is provided to enable researchers and practitioners the ability to further explore relationships to other dynamics in health care. Conclusions: This census assessment of US hospitals and their health systems provides a clear indication of the state of the sector. While stakeholder engagement is core to most discussions of the role that hospitals must play in relation to communities, management of an online presence has not been recognized as a core competency fundamental to care delivery. Yet, social media management and network engagement are skills that exist at the confluence of marketing and technical prowess. This paper presents performance guidelines evaluated against best-demonstrated practice or independent standards to facilitate improvement of the sector's use of websites and social media. ", doi="10.2196/jmir.3054", url="http://www.jmir.org/2014/2/e64/", url="http://www.ncbi.nlm.nih.gov/pubmed/24568892" } @Article{info:doi/10.2196/jmir.2939, author="H{\"a}meen-Anttila, Katri and Nordeng, Hedvig and Kokki, Esa and Jyrkk{\"a}, Johanna and Lupattelli, Angela and Vainio, Kirsti and Enlund, Hannes", title="Multiple Information Sources and Consequences of Conflicting Information About Medicine Use During Pregnancy: A Multinational Internet-Based Survey", journal="J Med Internet Res", year="2014", month="Feb", day="20", volume="16", number="2", pages="e60", keywords="pharmaceutical preparations", keywords="pregnancy", keywords="access to information", keywords="information seeking behavior", keywords="information dissemination", keywords="questionnaires", keywords="Internet", keywords="international", abstract="Background: A wide variety of information sources on medicines is available for pregnant women. When using multiple information sources, there is the risk that information will vary or even conflict. Objective: The objective of this multinational study was to analyze the extent to which pregnant women use multiple information sources and the consequences of conflicting information, and to investigate which maternal sociodemographic, lifestyle, and medical factors were associated with these objectives. Methods: An anonymous Internet-based questionnaire was made accessible during a period of 2 months, on 1 to 4 Internet websites used by pregnant women in 5 regions (Eastern Europe, Western Europe, Northern Europe, Americas, Australia). A total of 7092 responses were obtained (n=5090 pregnant women; n=2002 women with a child younger than 25 weeks). Descriptive statistics and logistic regression analysis were used. Results: Of the respondents who stated that they needed information, 16.16\% (655/4054) used one information source and 83.69\% (3393/4054) used multiple information sources. Of respondents who used more than one information source, 22.62\% (759/3355) stated that the information was conflicted. According to multivariate logistic regression analysis, factors significantly associated with experiencing conflict in medicine information included being a mother (OR 1.32, 95\% CI 1.11-1.58), having university (OR 1.33, 95\% CI 1.09-1.63) or other education (OR 1.49, 95\% CI 1.09-2.03), residing in Eastern Europe (OR 1.52, 95\% CI 1.22-1.89) or Australia (OR 2.28, 95\% CI 1.42-3.67), use of 3 (OR 1.29, 95\% CI 1.04-1.60) or >4 information sources (OR 1.82, 95\% CI 1.49-2.23), and having ?2 chronic diseases (OR 1.49, 95\% CI 1.18-1.89). Because of conflicting information, 43.61\% (331/759) decided not to use medication during pregnancy, 30.30\% (230/759) sought a new information source, 32.67\% (248/759) chose to rely on one source and ignore the conflicting one, 25.03\% (190/759) became anxious, and 2.64\% (20/759) did nothing. Factors significantly associated with not using medication as a consequence of conflicting information were being pregnant (OR 1.75, 95\% CI 1.28-2.41) or experiencing 3-4 health disorders (OR 1.99, 95\% CI 1.10-3.58). Women with no chronic diseases were more likely not to take medicines than women with ?2 chronic diseases (OR 2.22, 95\% CI 1.47-3.45). Factors significantly associated with becoming anxious were >4 information sources (OR 2.67, 95\% CI 1.70-4.18) and residing in Eastern Europe (OR 0.57, 95\% CI 0.36-0.90). Conclusions: Almost all the pregnant women used multiple information sources when seeking information on taking medicines during pregnancy and one-fifth obtained conflicting information, leading to anxiety and the decision not to use the medication. Regional, educational, and chronic disease characteristics were associated with experiencing conflicting information and influenced the decision not to use medication or increased anxiety. Accurate and uniform teratology information should be made more available to the public. ", doi="10.2196/jmir.2939", url="http://www.jmir.org/2014/2/e60/", url="http://www.ncbi.nlm.nih.gov/pubmed/24565696" } @Article{info:doi/10.2196/jmir.2831, author="Batenburg, Anika and Das, Enny", title="Emotional Coping Differences Among Breast Cancer Patients From an Online Support Group: A Cross-Sectional Study", journal="J Med Internet Res", year="2014", month="Feb", day="05", volume="16", number="2", pages="e28", keywords="Internet", keywords="support groups", keywords="self-help groups", keywords="social support", keywords="online systems", keywords="emotions", keywords="coping style", abstract="Background: Due to mixed findings in research on the effect of online peer-to-peer support on psychological well-being, there is a need for studies explaining why and when online support communities are beneficial for cancer patients. Objective: Previous studies have typically not taken into account individual coping differences, despite the fact that patients have different strategies to cope with cancer-related emotions. In the current study, it was predicted that the effects of online support group participation would partly depend on patients' ability to cope with thoughts and emotions regarding the illness. Methods: For this study, 184 Dutch breast cancer patients filled out a questionnaire assessing activity within a peer-led online support community, coping with emotions and thoughts regarding the illness (cognitive avoidance, emotional processing, and expression) and psychological well-being (depression, breast cancer-related concerns, and emotional well-being). Of these, 163 patients were visiting an online peer-led support community. Results: Results showed interactions of the intensity of support group participation and coping style on psychological well-being. Specifically, we found an interaction of online activity and emotional expression on depression (beta=--.17, P=.030), a marginally significant interaction of online activity and emotional expression on emotional well-being (beta=.14, P=.089), and an interaction of online activity and cognitive avoidance on breast cancer--related concerns (beta=.15, P=.027). For patients who actively dealt with their emotions and thoughts, active online support group participation was positively related to psychological well-being. For patients high on avoidance of illness-related thoughts or low on emotional expression, active participation was negatively related to measures of well-being. Conclusions: The current study revealed the role of individual differences in coping in online support group participation. Results suggest that breast cancer patients' ability to cope with emotions and thoughts regarding the illness influence the relationship between online support group participation and psychological well-being. ", doi="10.2196/jmir.2831", url="http://www.jmir.org/2014/2/e28/", url="http://www.ncbi.nlm.nih.gov/pubmed/24499687" } @Article{info:doi/10.2196/jmir.2842, author="Schook, Milia Romane and Linssen, Cilia and Schramel, MNH Franz and Festen, Jan and Lammers, Ernst and Smit, F. Egbert and Postmus, E. Pieter and Westerman, J. Marjan", title="Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study", journal="J Med Internet Res", year="2014", month="Feb", day="04", volume="16", number="2", pages="e37", keywords="lung cancer", keywords="patients", keywords="caregivers", keywords="website", keywords="online lung specialists", keywords="reasons", keywords="Internet", keywords="information needs", keywords="coping", keywords="qualitative", abstract="Background: Since its launch in 2003, the Dutch Lung Cancer Information Center's (DLIC) website has become increasingly popular. The most popular page of the website is the section ``Ask the Physician'', where visitors can ask an online lung specialist questions anonymously and receive an answer quickly. Most questions were not only asked by lung cancer patients but also by their informal caregivers. Most questions concerned specific information about lung cancer. Objective: Our goal was to explore the reasons why lung cancer patients and caregivers search the Internet for information and ask online lung specialists questions on the DLIC's interactive page, ``Ask the Physician'', rather than consulting with their own specialist. Methods: This research consisted of a qualitative study with semistructured telephone interviews about medical information-seeking behavior (eg, information needs, reasons for querying online specialists). The sample comprised 5 lung cancer patients and 20 caregivers who posed a question on the interactive page of the DLIC website. Results: Respondents used the Internet and the DLIC website to look for lung cancer--related information (general/specific to their personal situation) and to cope with cancer. They tried to achieve a better understanding of the information given by their own specialist and wanted to be prepared for the treatment trajectory and disease course. This mode of information supply helped them cope and gave them emotional support. The interactive webpage was also used as a second opinion. The absence of face-to-face contact made respondents feel freer to ask for any kind of information. By being able to pose a question instantly and receiving a relatively quick reply from the online specialist to urgent questions, respondents felt an easing of their anxiety as they did not have to wait until the next consultation with their own specialist. Conclusions: The DLIC website with its interactive page is a valuable complementary mode of information supply and supportive care for lung cancer patients and caregivers. ", doi="10.2196/jmir.2842", url="http://www.jmir.org/2014/2/e37/", url="http://www.ncbi.nlm.nih.gov/pubmed/24496139" } @Article{info:doi/10.2196/jmir.3078, author="Kim, Minki and Jung, Yuchul and Jung, Dain and Hur, Cinyoung", title="Investigating the Congruence of Crowdsourced Information With Official Government Data: The Case of Pediatric Clinics", journal="J Med Internet Res", year="2014", month="Feb", day="03", volume="16", number="2", pages="e29", keywords="online health community", keywords="crowdsourcing", keywords="risk of misinformation", keywords="public health", abstract="Background: Health 2.0 is a benefit to society by helping patients acquire knowledge about health care by harnessing collective intelligence. However, any misleading information can directly affect patients' choices of hospitals and drugs, and potentially exacerbate their health condition. Objective: This study investigates the congruence between crowdsourced information and official government data in the health care domain and identifies the determinants of low congruence where it exists. In-line with infodemiology, we suggest measures to help the patients in the regions vulnerable to inaccurate health information. Methods: We text-mined multiple online health communities in South Korea to construct the data for crowdsourced information on public health services (173,748 messages). Kendall tau and Spearman rank order correlation coefficients were used to compute the differences in 2 ranking systems of health care quality: actual government evaluations of 779 hospitals and mining results of geospecific online health communities. Then we estimated the effect of sociodemographic characteristics on the level of congruence by using an ordinary least squares regression. Results: The regression results indicated that the standard deviation of married women's education (P=.046), population density (P=.01), number of doctors per pediatric clinic (P=.048), and birthrate (P=.002) have a significant effect on the congruence of crowdsourced data (adjusted R2=.33). Specifically, (1) the higher the birthrate in a given region, (2) the larger the variance in educational attainment, (3) the higher the population density, and (4) the greater the number of doctors per clinic, the more likely that crowdsourced information from online communities is congruent with official government data. Conclusions: To investigate the cause of the spread of misleading health information in the online world, we adopted a unique approach by associating mining results on hospitals from geospecific online health communities with the sociodemographic characteristics of corresponding regions. We found that the congruence of crowdsourced information on health care services varied across regions and that these variations could be explained by geospecific demographic factors. This finding can be helpful to governments in reducing the potential risk of misleading online information and the accompanying safety issues. ", doi="10.2196/jmir.3078", url="http://www.jmir.org/2014/2/e29/", url="http://www.ncbi.nlm.nih.gov/pubmed/24496094" } @Article{info:doi/10.2196/jmir.2907, author="ten Hoor, Gill and Hoebe, JPA Christian and van Bergen, EAM Jan and Brouwers, EHG Elfi and Ruiter, AC Robert and Kok, Gerjo", title="The Influence of Two Different Invitation Letters on Chlamydia Testing Participation: Randomized Controlled Trial", journal="J Med Internet Res", year="2014", month="Jan", day="30", volume="16", number="1", pages="e24", keywords="invitation letter", keywords="chlamydia", keywords="screening", keywords="testing", keywords="behavior change theories", abstract="Background: In the Netherlands, screening for chlamydia (the most prevalent sexually transmitted infection worldwide) is a relatively simple and free procedure. Via an invitation letter sent by the public health services (PHS), people are asked to visit a website to request a test kit. They can then do a chlamydia test at home, send it anonymously to a laboratory, and, within two weeks, they can review their test results online and be treated by their general practitioner or the PHS. Unfortunately, the participation rates are low and the process is believed to be not (cost-) effective. Objective: The objective of this study was to assess whether the low participation rate of screening for chlamydia at home, via an invitation letter asking to visit a website and request a test kit, could be improved by optimizing the invitation letter through systematically applied behavior change theories and evidence. Methods: The original letter and a revised letter were randomly sent out to 13,551 citizens, 16 to 29 years old, in a Dutch municipality. Using behavior change theories, the revised letter sought to increase motivation to conduct chlamydia screening tests. The revised letter was tailored to beliefs that were found in earlier studies: risk perception, advantages and disadvantages (attitude), moral norm, social influence, and response- and self-efficacy. Revisions to the new letter also sought to avoid possible unwanted resistance caused when people feel pressured, and included prompts to trigger the desired behavior. Results: No significant differences in test package requests were found between the two letters. There were also no differences between the original and revised letters in the rates of returned tests (11.80\%, 581/4922 vs 11.07\%, 549/4961) or positive test results (4.8\%, 23/484 vs 4.1\%, 19/460). It is evident that the new letter did not improve participation compared to the original letter. Conclusions: It is clear that the approach of inviting the target population through a letter does not lead to higher participation rates for chlamydia screening. Other approaches have to be developed and pilot tested. ", doi="10.2196/jmir.2907", url="http://www.jmir.org/2014/1/e24/", url="http://www.ncbi.nlm.nih.gov/pubmed/24480721" } @Article{info:doi/10.2196/jmir.2924, author="Luger, M. Tana and Houston, K. Thomas and Suls, Jerry", title="Older Adult Experience of Online Diagnosis: Results From a Scenario-Based Think-Aloud Protocol", journal="J Med Internet Res", year="2014", month="Jan", day="16", volume="16", number="1", pages="e16", keywords="information seeking behavior", keywords="Internet", keywords="age factors", abstract="Background: Searching for online information to interpret symptoms is an increasingly prevalent activity among patients, even among older adults. As older adults typically have complex health care needs, their risk of misinterpreting symptoms via online self-diagnosis may be greater. However, limited research has been conducted with older adults in the areas of symptom interpretation and human-computer interaction. Objective: The intent of the study was to describe the processes that a sample of older adults may use to diagnose symptoms online as well as the processes that predict accurate diagnosis. Methods: We conducted a series of ``think-aloud'' protocols with 79 adults aged 50 years or older. Participants received one of two vignettes that depicted symptoms of illness. Participants talked out loud about their thoughts and actions while attempting to diagnose the symptoms with and without the help of common Internet tools (Google and WebMD's Symptom Checker). Think-aloud content was categorized using an adapted Q-sort and general inductive approach. We then compared the think-aloud content of participants who were accurate in their diagnosis with those who were not. Results: Nineteen descriptive codes were identified from the think-aloud content. The codes touched upon Web navigation, attempts to organize and evaluate online health information, and strategies to diagnose symptoms. Participants most frequently relied on a strategy where they reviewed and then rejected the online diagnoses if they contained additional symptoms than those that were depicted in the vignette. Finally, participants who were inaccurate in their diagnosis reported being confused by the diagnosis task, lacking confidence in their diagnosis, and using their past experiences with illness to guide diagnosis more frequently than those participants who accurately diagnosed the symptoms. Conclusions: Older adult participants tended to rely on matching strategies to interpret symptoms, but many still utilized existing medical knowledge and previous illness experiences as a guide for diagnosis. Many participants also had difficulty navigating the Internet tools, which suggests an increased need for navigation aids in Web design. Furthermore, participants who were inaccurate in their diagnosis had more difficulty with the Internet tools and confusion with the task than those who were accurate. Future work in this area may want to utilize additional study design such as eye-tracking to further understand the coordination between Web navigation, online symptom information processing, and diagnostic strategies. ", doi="10.2196/jmir.2924", url="http://www.jmir.org/2014/1/e16/", url="http://www.ncbi.nlm.nih.gov/pubmed/24434479" } @Article{info:doi/10.2196/jmir.2875, author="Sudau, Fabian and Friede, Tim and Grabowski, Jens and Koschack, Janka and Makedonski, Philip and Himmel, Wolfgang", title="Sources of Information and Behavioral Patterns in Online Health Forums: Observational Study", journal="J Med Internet Res", year="2014", month="Jan", day="14", volume="16", number="1", pages="e10", keywords="Internet utilization", keywords="information dissemination", keywords="data mining", keywords="social media", keywords="social networks", keywords="multiple sclerosis", keywords="CCSVI", abstract="Background: Increasing numbers of patients are raising their voice in online forums. This shift is welcome as an act of patient autonomy, reflected in the term ``expert patient''. At the same time, there is considerable concern that patients can be easily misguided by pseudoscientific research and debate. Little is known about the sources of information used in health-related online forums, how users apply this information, and how they behave in such forums. Objective: The intent of the study was to identify (1) the sources of information used in online health-related forums, and (2) the roles and behavior of active forum visitors in introducing and disseminating this information. Methods: This observational study used the largest German multiple sclerosis (MS) online forum as a database, analyzing the user debate about the recently proposed and controversial Chronic Cerebrospinal Venous Insufficiency (CCSVI) hypothesis. After extracting all posts and then filtering relevant CCSVI posts between 01 January 2008 and 17 August 2012, we first identified hyperlinks to scientific publications and other information sources used or referenced in the posts. Employing k-means clustering, we then analyzed the users' preference for sources of information and their general posting habits. Results: Of 139,912 posts from 11,997 threads, 8628 posts discussed or at least mentioned CCSVI. We detected hyperlinks pointing to CCSVI-related scientific publications in 31 posts. In contrast, 2829 different URLs were posted to the forum, most frequently referring to social media, such as YouTube or Facebook. We identified a total of 6 different roles of hyperlink posters including Social Media Fans, Organization Followers, and Balanced Source Users. Apart from the large and nonspecific residual category of the ``average user'', several specific behavior patterns were identified, such as the small but relevant groups of CCSVI-Focused Responders or CCSVI Activators. Conclusions: The bulk of the observed contributions were not based on scientific results, but on various social media sources. These sources seem to contain mostly opinions and personal experience. A small group of people with distinct behavioral patterns played a core role in fuelling the discussion about CCSVI. ", doi="10.2196/jmir.2875", url="http://www.jmir.org/2014/1/e10/", url="http://www.ncbi.nlm.nih.gov/pubmed/24425598" } @Article{info:doi/10.2196/jmir.2914, author="Jimbo, Masahito and Shultz, Garth Cameron and Nease, Eugene Donald and Fetters, Derwin Michael and Power, Debra and Ruffin IV, Thomas Mack", title="Perceived Barriers and Facilitators of Using a Web-Based Interactive Decision Aid for Colorectal Cancer Screening in Community Practice Settings: Findings From Focus Groups With Primary Care Clinicians and Medical Office Staff", journal="J Med Internet Res", year="2013", month="Dec", day="18", volume="15", number="12", pages="e286", keywords="colon cancer", keywords="colonoscopy", keywords="cancer screening", keywords="early detection of cancer", keywords="reminder systems", keywords="decision support techniques", keywords="focus groups", keywords="health information technology", abstract="Background: Information is lacking about the capacity of those working in community practice settings to utilize health information technology for colorectal cancer screening. Objective: To address this gap we asked those working in community practice settings to share their perspectives about how the implementation of a Web-based patient-led decision aid might affect patient-clinician conversations about colorectal cancer screening and the day-to-day clinical workflow. Methods: Five focus groups in five community practice settings were conducted with 8 physicians, 1 physician assistant, and 18 clinic staff. Focus groups were organized using a semistructured discussion guide designed to identify factors that mediate and impede the use of a Web-based decision aid intended to clarify patient preferences for colorectal cancer screening and to trigger shared decision making during the clinical encounter. Results: All physicians, the physician assistant, and 8 of the 18 clinic staff were active participants in the focus groups. Clinician and staff participants from each setting reported a belief that the Web-based patient-led decision aid could be an informative and educational tool; in all but one setting participants reported a readiness to recommend the tool to patients. The exception related to clinicians from one clinic who described a preference for patients having fewer screening choices, noting that a colonoscopy was the preferred screening modality for patients in their clinic. Perceived barriers to utilizing the Web-based decision aid included patients' lack of Internet access or low computer literacy, and potential impediments to the clinics' daily workflow. Expanding patients' use of an online decision aid that is both easy to access and understand and that is utilized by patients outside of the office visit was described as a potentially efficient means for soliciting patients' screening preferences. Participants described that a system to link the online decision aid to a computerized reminder system could promote a better understanding of patients' screening preferences, though some expressed concern that such a system could be difficult to keep up and running. Conclusions: Community practice clinicians and staff perceived the Web-based decision aid technology as promising but raised questions as to how the technology and resultant information would be integrated into their daily practice workflow. Additional research investigating how to best implement online decision aids should be conducted prior to the widespread adoption of such technology so as to maximize the benefits of the technology while minimizing workflow disruptions. ", doi="10.2196/jmir.2914", url="http://www.jmir.org/2013/12/e286/", url="http://www.ncbi.nlm.nih.gov/pubmed/24351420" } @Article{info:doi/10.2196/jmir.2783, author="Zhang, Yan", title="The Effects of Preference for Information on Consumers' Online Health Information Search Behavior", journal="J Med Internet Res", year="2013", month="Nov", day="26", volume="15", number="11", pages="e234", keywords="preference for information", keywords="health information", keywords="consumer search behavior", keywords="search engines", abstract="Background: Preference for information is a personality trait that affects people's tendency to seek information in health-related situations. Prior studies have focused primarily on investigating its impact on patient-provider communication and on the implications for designing information interventions that prepare patients for medical procedures. Few studies have examined its impact on general consumers' interactions with Web-based search engines for health information or the implications for designing more effective health information search systems. Objective: This study intends to fill this gap by investigating the impact of preference for information on the search behavior of general consumers seeking health information, their perceptions of search tasks (representing information needs), and user experience with search systems. Methods: Forty general consumers who had previously searched for health information online participated in the study in our usability lab. Preference for information was measured using Miller's Monitor-Blunter Style Scale (MBSS) and the Krantz Health Opinion Survey-Information Scale (KHOS-I). Each participant completed four simulated health information search tasks: two look-up (fact-finding) and two exploratory. Their behaviors while interacting with the search systems were automatically logged and ratings of their perceptions of tasks and user experience with the systems were collected using Likert-scale questionnaires. Results: The MBSS showed low reliability with the participants (Monitoring subscale: Cronbach alpha=.53; Blunting subscale: Cronbach alpha=.35). Thus, no further analyses were performed based on the scale. KHOS-I had sufficient reliability (Cronbach alpha=.77). Participants were classified into low- and high-preference groups based on their KHOS-I scores. The high-preference group submitted significantly shorter queries when completing the look-up tasks (P=.02). The high-preference group made a significantly higher percentage of parallel movements in query reformulation than did the low-preference group (P=.04), whereas the low-preference group made a significantly higher percentage of new concept movements than the high-preference group when completing the exploratory tasks (P=.01). The high-preference group found the exploratory tasks to be significantly more difficult (P=.05) and the systems to be less useful (P=.04) than did the low-preference group. Conclusions: Preference for information has an impact on the search behavior of general consumers seeking health information. Those with a high preference were more likely to use more general queries when searching for specific factual information and to develop more complex mental representations of health concerns of an exploratory nature and try different combinations of concepts to explore these concerns. High-preference users were also more demanding on the system. Health information search systems should be tailored to fit individuals' information preferences. ", doi="10.2196/jmir.2783", url="http://www.jmir.org/2013/11/e234/", url="http://www.ncbi.nlm.nih.gov/pubmed/24284061" } @Article{info:doi/10.2196/jmir.2888, author="Gilbert, Mark and Hottes, Salway Travis and Kerr, Thomas and Taylor, Darlene and Fairley, K. Christopher and Lester, Richard and Wong, Tom and Trussler, Terry and Marchand, Rick and Shoveller, Jean and Ogilvie, Gina", title="Factors Associated With Intention to Use Internet-Based Testing for Sexually Transmitted Infections Among Men Who Have Sex With Men", journal="J Med Internet Res", year="2013", month="Nov", day="14", volume="15", number="11", pages="e254", keywords="homosexuality", keywords="male", keywords="Internet", keywords="testing", keywords="human immunodeficiency virus", keywords="sexually transmitted infection", keywords="health equity", keywords="patient acceptance of health care", abstract="Background: Internet-based testing programs are being increasingly used to reduce testing barriers for individuals at higher risk of infection, yet the population impact and potential for exacerbation of existing health inequities of these programs are not well understood. Objective: We used a large online sample of men who have sex with men (MSM) in Canada to measure acceptability of Internet-based testing and perceived advantages and disadvantages of this testing approach. Methods: We asked participants of the 2011/2012 Sex Now Survey (a serial online survey of gay and bisexual men in Canada) whether they intended to use Internet-based testing and their perceived benefits and disadvantages of use. We examined whether intention to use was associated with explanatory variables spanning (A) sociodemographics, (B) Internet and technology usage, (C) sexually transmitted infections (STI)/ human immunodeficiency virus (HIV) and risk, and (D) health care access and testing, using multivariable logistic regression (variable selection using Bayesian information criterion). Results: Overall, intention to use was high (5678/7938, 71.53\%) among participants with little variation by participant characteristics. In our final model, we retained the variables related to (B) Internet and technology usage: use of Internet to cruise for sex partners (adjusted odds ratio [AOR] 1.46, 95\% CI 1.25-1.70), use of Internet to search for sexual health information (AOR 1.36, 95\% CI 1.23-1.51), and mobile phone usage (AOR 1.19, 95\% 1.13-1.24). We also retained the variables for (D) health care access and testing: not ``out'' to primary care provider (AOR 1.24, 95\% CI 1.10-1.41), delayed/avoided testing due to privacy concerns (AOR 1.77, 95\% CI 1.49-2.11), and delayed/avoided testing due to access issues (AOR 1.65, 95\% CI 1.40-1.95). Finally, we retained the variable being HIV positive (AOR 0.56, 95\% CI 0.46-0.68) or HIV status unknown (AOR 0.89, 95\% CI 0.77-1.01), age <30 years (AOR 1.41, 95\% CI 1.22-1.62), and identifying as bisexual (AOR 1.18, 95\% CI 1.04-1.34) or straight/other (AOR 0.67, 95\% CI 0.50-0.90). The greatest perceived benefits of Internet-based testing were privacy (2249/8388, 26.81\%), general convenience (1701/8388, 20.28\%), and being able to test at any time (1048/8388, 12.49\%). The greatest perceived drawbacks were the inability to see a doctor or nurse (1507/8388, 17.97\%), wanting to talk to someone about results (1430/8388, 17.97\%), not wanting online results (1084/8388, 12.92\%), and low trust (973/8388, 11.60\%). Conclusions: The high and wide-ranging intention to use that we observed suggests Internet-based testing has the potential to reach into all subgroups of MSM and may be particularly appealing to those facing current barriers to accessing STI/HIV testing and who are more comfortable with technology. These findings will be used to inform the promotion and further evaluation of an Internet-based testing program currently under development in British Columbia, Canada. ", doi="10.2196/jmir.2888", url="http://www.jmir.org/2013/11/e254/", url="http://www.ncbi.nlm.nih.gov/pubmed/24240644" } @Article{info:doi/10.2196/jmir.2764, author="Ashley, Laura and Jones, Helen and Thomas, James and Newsham, Alex and Downing, Amy and Morris, Eva and Brown, Julia and Velikova, Galina and Forman, David and Wright, Penny", title="Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System", journal="J Med Internet Res", year="2013", month="Oct", day="25", volume="15", number="10", pages="e230", keywords="cancer", keywords="oncology", keywords="patient reported outcomes", keywords="patient reported outcome measures", keywords="health-related quality of life", keywords="survivorship", keywords="cancer registry", keywords="electronic data capture", keywords="health information technology", keywords="Internet", abstract="Background: Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. Objective: This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Methods: Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. Results: ePOCS ran efficiently with few technical problems. Patient participation was 55.21\% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4\%, 490/798) than by telephone (48.8\%, 21/43) or letter (41.0\%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1\%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1\% (541/636) of invited participants at T1 (80 questions total), 70.0\% (442/631) at T2 (102-108 questions), and 66.3\% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6\% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100\% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2\%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month. Conclusions: The informatics underlying the ePOCS system demonstrated successful proof-of-concept -- the system successfully linked PROs with registry data for 100\% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision. ", doi="10.2196/jmir.2764", url="http://www.jmir.org/2013/10/e230/", url="http://www.ncbi.nlm.nih.gov/pubmed/24161667" } @Article{info:doi/10.2196/med20.2729, author="Scandurra, Isabella and Sj{\"o}linder, Marie", title="Participatory Design With Seniors: Design of Future Services and Iterative Refinements of Interactive eHealth Services for Old Citizens", journal="Med 2.0", year="2013", month="Oct", day="08", volume="2", number="2", pages="e12", keywords="Internet", keywords="community-based participatory research", keywords="systems analysis", keywords="interdisciplinary communication", keywords="community networks", keywords="professional-patient relations", keywords="seniors", keywords="elderly users", keywords="television", keywords="social inclusion", abstract="Background: There is an increasing social isolation among the elderly today. This will be an even larger issue in the future with growing numbers of elderly and less resources, for example, in terms of economy and staff. Loneliness and social isolation can, however, be addressed in several ways using different interactive eHealth services. Objective: This case study investigated novel eHealth services for the elderly, and their usage of a social interactive device designed especially for them. Methods: In this work, we used an innovative mobile communication device connected to the television (TV), which worked as a remotely controlled large interactive screen. The device was tested by 8 volunteers who visited a senior center. They were between 65 and 80 years of age and lived in their own homes. Throughout the 1.5 year-long project, 7 design workshops were held with the seniors and the staff at the center. During these workshops, demands and preferences regarding existing and new services were gathered. At the end of the project the participants' experience of the device and of the services was elaborated in 3 workshops to get ideas for improved or new meaningful services. During the data analyses and development process, what seniors thought would be useful in relation to what was feasible was prioritized by the development company. Results: Regarding daily usage, the seniors reported that they mainly used the service for receiving information from the senior center and for communication with other participants in the group or with younger relatives. They also read information about events at the senior center and they liked to perform a weekly sent out workout exercise. Further, they played games such as Memory and Sudoku using the device. The service development focused on three categories of services: cognitive activities, social activities, and physical activities. A cognitive activity service that would be meaningful to develop was a game for practicing working memory. In the social activities category, the seniors wanted different quizzes and multi-player games. For physical activities, the seniors desired more workout exercises and suggestions for guided walking routes. A new category, ``information and news'', was suggested since they lacked services like senior-customized global and local news. Conclusions: This study showed the importance of input from a group of seniors when designing new services for elderly citizens. Besides input to interactive eHealth service development for seniors, this study showed the importance of a social context around such work. The seniors were very engaged throughout the project and workshops were frequently visited and the seniors became friends. The high amount of input from the seniors could be explained in terms of social inclusion; they belonged to a group and each member was considered important for the work. The friendly workshop atmosphere facilitated new ideas and redesign of the services. ", doi="10.2196/med20.2729", url="http://www.medicine20.com/2013/2/e12/", url="http://www.ncbi.nlm.nih.gov/pubmed/25075235" } @Article{info:doi/10.2196/jmir.2682, author="Lau, YS Annie and Dunn, G. Adam and Mortimer, Nathan and Gallagher, Aideen and Proudfoot, Judith and Andrews, Annie and Liaw, Siaw-Teng and Crimmins, Jacinta and Arguel, Ama{\"e}l and Coiera, Enrico", title="Social and Self-Reflective Use of a Web-Based Personally Controlled Health Management System", journal="J Med Internet Res", year="2013", month="Sep", day="23", volume="15", number="9", pages="e211", keywords="personal health record", keywords="social networks", keywords="Internet intervention", keywords="health service", keywords="help-seeking", keywords="emotional well-being", keywords="physical well-being", keywords="preventative health", keywords="eHealth", keywords="consumer", keywords="university", abstract="Background: Personally controlled health management systems (PCHMSs) contain a bundle of features to help patients and consumers manage their health. However, it is unclear how consumers actually use a PCHMS in their everyday settings. Objective: To conduct an empirical analysis of how consumers used the social (forum and poll) and self-reflective (diary and personal health record [PHR]) features of a Web-based PCHMS designed to support their physical and emotional well-being. Methods: A single-group pre/post-test online prospective study was conducted to measure use of a Web-based PCHMS for physical and emotional well-being needs during a university academic semester. The PCHMS integrated an untethered PHR with social forums, polls, a diary, and online messaging links with a health service provider. Well-being journeys additionally provided information to encourage engagement with clinicians and health services. A total of 1985 students and staff aged 18 and above with access to the Internet were recruited online, of which 709 were eligible for analysis. Participants' self-reported well-being, health status, health service utilization, and help-seeking behaviors were compared using chi-square, McNemar's test, and Student's t test. Social networks were constructed to examine the online forum communication patterns among consumers and clinicians. Results: The two PCHMS features that were used most frequently and considered most useful and engaging were the social features (ie, the poll and forum). More than 30\% (213/709) of participants who sought well-being assistance during the study indicated that other people had influenced their decision to seek help (54.4\%, 386/709 sought assistance for physical well-being; 31.7\%, 225/709 for emotional well-being). Although the prevalence of using a self-reflective feature (diary or PHR) was not as high (diary: 8.6\%, 61/709; PHR: 15.0\%, 106/709), the proportion of participants who visited a health care professional during the study was more than 20\% greater in the group that did use a self-reflective feature (diary: P=.03; PHR: P<.001). Conclusions: There was variation in the degree to which consumers used social and self-reflective PCHMS features but both were significantly associated with increased help-seeking behaviors and health service utilization. A PCHMS should combine both self-reflective as well as socially driven components to most effectively influence consumers' help-seeking behaviors. ", doi="10.2196/jmir.2682", url="http://www.jmir.org/2013/9/e211/", url="http://www.ncbi.nlm.nih.gov/pubmed/24064188" } @Article{info:doi/10.2196/med20.2559, author="Jones, Ray", title="Development of a Questionnaire and Cross-Sectional Survey of Patient eHealth Readiness and eHealth Inequalities", journal="Med 2.0", year="2013", month="Sep", day="02", volume="2", number="2", pages="e9", keywords="eHealth readiness", keywords="eHealth inequalities", keywords="digital divide", keywords="questionnaire development", abstract="Background: Many speak of the digital divide, but variation in the opportunity of patients to use the Internet for health (patient eHealth readiness) is not a binary difference, rather a distribution influenced by personal capability, provision of services, support, and cost. Digital divisions in health have been addressed by various initiatives, but there was no comprehensive validated measure to know if they are effective that could be used in randomized controlled trials (RCTs) covering both non-Internet-users and the range of Internet-users. Objective: The aim of this study was to develop and validate a self-completed questionnaire and scoring system to assess patient eHealth readiness by examining the spread of scores and eHealth inequalities. The intended use of this questionnaire and scores is in RCTs of interventions aiming to improve patient eHealth readiness and reduce eHealth inequalities. Methods: Based on four factors identified from the literature, a self-completed questionnaire, using a pragmatic combination of factual and attitude questions, was drafted and piloted in three stages. This was followed by a final population-based, cross-sectional household survey of 344 people used to refine the scoring system. Results: The Patient eHealth Readiness Questionnaire (PERQ) includes questions used to calculate four subscores: patients' perception of (1) provision, (2) their personal ability and confidence, (3) their interpersonal support, and (4) relative costs in using the Internet for health. These were combined into an overall PERQ score (0-9) which could be used in intervention studies. Reduction in standard deviation of the scores represents reduction in eHealth inequalities. Conclusions: PERQ appears acceptable for participants in British studies. The scores produced appear valid and will enable assessment of the effectiveness of interventions to improve patient eHealth readiness and reduce eHealth inequalities. Such methods need continued evolution and redevelopment for other environments. Full documentation and data have been published to allow others to develop the tool further. ", doi="10.2196/med20.2559", url="http://www.medicine20.com/2013/2/e9/", url="http://www.ncbi.nlm.nih.gov/pubmed/25075244" } @Article{info:doi/10.2196/jmir.2660, author="Muhlestein, B. David and Wilks, A. Chrisanne E. and Richter, P. Jason", title="Limited Use of Price and Quality Advertising Among American Hospitals", journal="J Med Internet Res", year="2013", month="Aug", day="29", volume="15", number="8", pages="e185", keywords="hospitals", keywords="patients", keywords="quality indicators", keywords="commerce", abstract="Background: Consumer-directed policies, including health savings accounts, have been proposed and implemented to involve individuals more directly with the cost of their health care. The hope is this will ultimately encourage providers to compete for patients based on price or quality, resulting in lower health care costs and better health outcomes. Objective: To evaluate American hospital websites to learn whether hospitals advertise directly to consumers using price or quality data. Methods: Structured review of websites of 10\% of American hospitals (N=474) to evaluate whether price or quality information is available to consumers and identify what hospitals advertise about to attract consumers. Results: On their websites, 1.3\% (6/474) of hospitals advertised about price and 19.0\% (90/474) had some price information available; 5.7\% (27/474) of hospitals advertised about quality outcomes information and 40.9\% (194/474) had some quality outcome data available. Price and quality information that was available was limited and of minimal use to compare hospitals. Hospitals were more likely to advertise about service lines (56.5\%, 268/474), access (49.6\%, 235/474), awards (34.0\%, 161/474), and amenities (30.8\%, 146/474). Conclusions: Insufficient information currently exists for consumers to choose hospitals on the basis of price or quality, making current consumer-directed policies unlikely to realize improved quality or lower costs. Consumers may be more interested in information not related to cost or clinical factors when choosing a hospital, so consumer-directed strategies may be better served before choosing a provider, such as when choosing a health plan. ", doi="10.2196/jmir.2660", url="http://www.jmir.org/2013/8/e185/", url="http://www.ncbi.nlm.nih.gov/pubmed/23988296" } @Article{info:doi/10.2196/jmir.2702, author="Emmert, Martin and Meier, Florian and Pisch, Frank and Sander, Uwe", title="Physician Choice Making and Characteristics Associated With Using Physician-Rating Websites: Cross-Sectional Study", journal="J Med Internet Res", year="2013", month="Aug", day="28", volume="15", number="8", pages="e187", keywords="physician-rating website", keywords="public reporting", keywords="patient satisfaction", keywords="physician choice making", abstract="Background: Over the past decade, physician-rating websites have been gaining attention in scientific literature and in the media. However, little knowledge is available about the awareness and the impact of using such sites on health care professionals. It also remains unclear what key predictors are associated with the knowledge and the use of physician-rating websites. Objective: To estimate the current level of awareness and use of physician-rating websites in Germany and to determine their impact on physician choice making and the key predictors which are associated with the knowledge and the use of physician-rating websites. Methods: This study was designed as a cross-sectional survey. An online panel was consulted in January 2013. A questionnaire was developed containing 28 questions; a pretest was carried out to assess the comprehension of the questionnaire. Several sociodemographic (eg, age, gender, health insurance status, Internet use) and 2 health-related independent variables (ie, health status and health care utilization) were included. Data were analyzed using descriptive statistics, chi-square tests, and t tests. Binary multivariate logistic regression models were performed for elaborating the characteristics of physician-rating website users. Results from the logistic regression are presented for both the observed and weighted sample. Results: In total, 1505 respondents (mean age 43.73 years, SD 14.39; 857/1505, 57.25\% female) completed our survey. Of all respondents, 32.09\% (483/1505) heard of physician-rating websites and 25.32\% (381/1505) already had used a website when searching for a physician. Furthermore, 11.03\% (166/1505) had already posted a rating on a physician-rating website. Approximately 65.35\% (249/381) consulted a particular physician based on the ratings shown on the websites; in contrast, 52.23\% (199/381) had not consulted a particular physician because of the publicly reported ratings. Significantly higher likelihoods for being aware of the websites could be demonstrated for female participants (P<.001), those who were widowed (P=.01), covered by statutory health insurance (P=.02), and with higher health care utilization (P<.001). Health care utilization was significantly associated with all dependent variables in our multivariate logistic regression models (P<.001). Furthermore, significantly higher scores could be shown for health insurance status in the unweighted and Internet use in the weighted models. Conclusions: Neither health policy makers nor physicians should underestimate the influence of physician-rating websites. They already play an important role in providing information to help patients decide on an appropriate physician. Assuming there will be a rising level of public awareness, the influence of their use will increase well into the future. Future studies should assess the impact of physician-rating websites under experimental conditions and investigate whether physician-rating websites have the potential to reflect the quality of care offered by health care providers. ", doi="10.2196/jmir.2702", url="http://www.jmir.org/2013/8/e187/", url="http://www.ncbi.nlm.nih.gov/pubmed/23985220" } @Article{info:doi/10.2196/jmir.2507, author="Zarcadoolas, Christina and Vaughon, L. Wendy and Czaja, J. Sara and Levy, Joslyn and Rockoff, L. Maxine", title="Consumers' Perceptions of Patient-Accessible Electronic Medical Records", journal="J Med Internet Res", year="2013", month="Aug", day="26", volume="15", number="8", pages="e168", keywords="electronic medical record", keywords="EMR", keywords="patient portal", keywords="usability", keywords="health literacy", abstract="Background: Electronic health information (eHealth) tools for patients, including patient-accessible electronic medical records (patient portals), are proliferating in health care delivery systems nationally. However, there has been very limited study of the perceived utility and functionality of portals, as well as limited assessment of these systems by vulnerable (low education level, racial/ethnic minority) consumers. Objective: The objective of the study was to identify vulnerable consumers' response to patient portals, their perceived utility and value, as well as their reactions to specific portal functions. Methods: This qualitative study used 4 focus groups with 28 low education level, English-speaking consumers in June and July 2010, in New York City. Results: Participants included 10 males and 18 females, ranging in age from 21-63 years; 19 non-Hispanic black, 7 Hispanic, 1 non-Hispanic White and 1 Other. None of the participants had higher than a high school level education, and 13 had less than a high school education. All participants had experience with computers and 26 used the Internet. Major themes were enhanced consumer engagement/patient empowerment, extending the doctor's visit/enhancing communication with health care providers, literacy and health literacy factors, improved prevention and health maintenance, and privacy and security concerns. Consumers were also asked to comment on a number of key portal features. Consumers were most positive about features that increased convenience, such as making appointments and refilling prescriptions. Consumers raised concerns about a number of potential barriers to usage, such as complex language, complex visual layouts, and poor usability features. Conclusions: Most consumers were enthusiastic about patient portals and perceived that they had great utility and value. Study findings suggest that for patient portals to be effective for all consumers, portals must be designed to be easy to read, visually engaging, and have user-friendly navigation. ", doi="10.2196/jmir.2507", url="http://www.jmir.org/2013/8/e168/", url="http://www.ncbi.nlm.nih.gov/pubmed/23978618" } @Article{info:doi/10.2196/jmir.2701, author="Luchenski, A. Serena and Reed, E. Julie and Marston, Cicely and Papoutsi, Chrysanthi and Majeed, Azeem and Bell, Derek", title="Patient and Public Views on Electronic Health Records and Their Uses in the United Kingdom: Cross-Sectional Survey", journal="J Med Internet Res", year="2013", month="Aug", day="23", volume="15", number="8", pages="e160", keywords="electronic health records", keywords="patient attitudes", keywords="health care delivery", keywords="research", keywords="policy", abstract="Background: The development and implementation of electronic health records (EHRs) remains an international challenge. Better understanding of patient and public attitudes and the factors that influence overall levels of support toward EHRs is needed to inform policy. Objective: To explore patient and public attitudes toward integrated EHRs used simultaneously for health care provision, planning and policy, and health research. Methods: Cross-sectional questionnaire survey administered to patients and members of the public who were recruited from a stratified cluster random sample of 8 outpatient clinics of a major teaching hospital and 8 general practices in London (United Kingdom). Results: 5331 patients and members of the public responded to the survey, with 2857 providing complete data for the analysis presented here. There were moderately high levels of support for integrated EHRs used simultaneously for health care provision, planning and policy, and health research (1785/2857, 62.47\%), while 27.93\% (798/2857) of participants reported being undecided about whether or not they would support EHR use. There were higher levels of support for specific uses of EHRs. Most participants were in favor of EHRs for personal health care provision (2563/2857, 89.71\%), with 66.75\% (1907/2857) stating that they would prefer their complete, rather than limited, medical history to be included. Of those ``undecided'' about integrated EHRs, 87.2\% (696/798) were nevertheless in favor of sharing their full (373/798, 46.7\%) or limited (323/798, 40.5\%) records for health provision purposes. There were similar high levels of support for use of EHRs in health services policy and planning (2274/2857, 79.59\%) and research (2325/2857, 81.38\%), although 59.75\% (1707/2857) and 67.10\% (1917/2857) of respondents respectively would prefer their personal identifiers to be removed. Multivariable analysis showed levels of overall support for EHRs decreasing with age. Respondents self-identifying as Black British were more likely to report being undecided or unsupportive of national EHRs. Frequent health services users were more likely to report being supportive than undecided. Conclusions: Despite previous difficulties with National Health Service (NHS) technology projects, patients and the public generally support the development of integrated EHRs for health care provision, planning and policy, and health research. This support, however, varies between social groups and is not unqualified; relevant safeguards must be in place and patients should be guided in their decision-making process, including increased awareness about the benefits of EHRs for secondary uses. ", doi="10.2196/jmir.2701", url="http://www.jmir.org/2013/8/e160/", url="http://www.ncbi.nlm.nih.gov/pubmed/23975239" } @Article{info:doi/10.2196/jmir.2655, author="Emmert, Martin and Meier, Florian", title="An Analysis of Online Evaluations on a Physician Rating Website: Evidence From a German Public Reporting Instrument", journal="J Med Internet Res", year="2013", month="Aug", day="06", volume="15", number="8", pages="e157", keywords="physician rating website", keywords="public reporting", keywords="quality of care", keywords="Internet", keywords="patient satisfaction", abstract="Background: Physician rating websites (PRW) have been gaining in popularity among patients who are seeking a physician. However, little evidence is available on the number, distribution, or trend of evaluations on PRWs. Furthermore, there is no published evidence available that analyzes the characteristics of the patients who provide ratings on PRWs. Objective: The objective of the study was to analyze all physician evaluations that were posted on the German PRW, jameda, in 2012. Methods: Data from the German PRW, jameda, from 2012 were analyzed and contained 127,192 ratings of 53,585 physicians from 107,148 patients. Information included medical specialty and gender of the physician, age, gender, and health insurance status of the patient, as well as the results of the physician ratings. Statistical analysis was carried out using the median test and Kendall Tau-b test. Results: Thirty-seven percent of all German physicians were rated on jameda in 2012. Nearly half of those physicians were rated once, and less than 2\% were rated more than ten times (mean number of ratings 2.37, SD 3.17). About one third of all rated physicians were female. Rating patients were mostly female (60\%), between 30-50 years (51\%) and covered by Statutory Health Insurance (83\%). A mean of 1.19 evaluations per patient could be calculated (SD 0.778). Most of the rated medical specialties were orthopedists, dermatologists, and gynecologists. Two thirds of all ratings could be assigned to the best category, ``very good''. Female physicians had significantly better ratings than did their male colleagues (P<.001). Additionally, significant rating differences existed between medical specialties (P<.001). It could further be shown that older patients gave better ratings than did their younger counterparts (P<.001). The same was true for patients covered by private health insurance; they gave more favorable evaluations than did patients covered by statutory health insurance (P<.001). No significant rating differences could be detected between female and male patients (P=.505). The likelihood of a good rating was shown to increase with a rising number of both physician and patient ratings. Conclusions: Our findings are mostly in line with those published for PRWs from the United States. It could be shown that most of the ratings were positive, and differences existed regarding sociodemographic characteristics of both physicians and patients. An increase in the usage of PRWs might contribute to reducing the lack of publicly available information on physician quality. However, it remains unclear whether PRWs have the potential to reflect the quality of care offered by individual health care providers. Further research should assess in more detail the motivation of patients who rate their physicians online. ", doi="10.2196/jmir.2655", url="http://www.jmir.org/2013/8/e157/", url="http://www.ncbi.nlm.nih.gov/pubmed/23919987" } @Article{info:doi/10.2196/jmir.2472, author="Zulman, M. Donna and Piette, D. John and Jenchura, C. Emily and Asch, M. Steven and Rosland, Ann-Marie", title="Facilitating Out-of-Home Caregiving Through Health Information Technology: Survey of Informal Caregivers' Current Practices, Interests, and Perceived Barriers", journal="J Med Internet Res", year="2013", month="Jul", day="10", volume="15", number="7", pages="e123", keywords="caregivers", keywords="chronic disease", keywords="medical informatics", abstract="Background: Many patients with chronic conditions are supported by out-of-home informal caregivers---family members, friends, and other individuals who provide care and support without pay---who, if armed with effective consumer health information technology, could inexpensively facilitate their care. Objective: We sought to understand caregivers' use of, interest in, and perceived barriers to health information technology for out-of-home caregiving. Methods: We conducted 2 sequential Web-based surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers' technology use for caregiving. Results: Among 316 out-of-home caregiver respondents, 34.5\% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-of-home caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95\% CI 1.01-3.50) for low intensity caregivers, 2.39 (95\% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95\% CI 1.62-8.45) for high intensity caregivers. Over 70\% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients' health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving. Conclusions: Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers' interest in and use of technology by modifying privacy policies that impede information exchange. ", doi="10.2196/jmir.2472", url="http://www.jmir.org/2013/7/e123/", url="http://www.ncbi.nlm.nih.gov/pubmed/23841987" } @Article{info:doi/10.2196/jmir.2552, author="Detz, Alissa and L{\'o}pez, Andrea and Sarkar, Urmimala", title="Long-Term Doctor-Patient Relationships: Patient Perspective From Online Reviews", journal="J Med Internet Res", year="2013", month="Jul", day="02", volume="15", number="7", pages="e131", keywords="social media", keywords="qualitative", keywords="primary care", abstract="Background: Continuity of patient care is one of the cornerstones of primary care. Objective: To examine publicly available, Internet-based reviews of adult primary care physicians, specifically written by patients who report long-term relationships with their physicians. Methods: This substudy was nested within a larger qualitative content analysis of online physician ratings. We focused on reviews reflecting an established patient-physician relationship, that is, those seeing their physicians for at least 1 year. Results: Of the 712 Internet reviews of primary care physicians, 93 reviews (13.1\%) were from patients that self-identified as having a long-term relationship with their physician, 11 reviews (1.5\%) commented on a first-time visit to a physician, and the remainder of reviews (85.4\%) did not specify the amount of time with their physician. Analysis revealed six overarching domains: (1) personality traits or descriptors of the physician, (2) technical competence, (3) communication, (4) access to physician, (5) office staff/environment, and (6) coordination of care. Conclusions: Our analysis shows that patients who have been with their physician for at least 1 year write positive reviews on public websites and focus on physician attributes. ", doi="10.2196/jmir.2552", url="http://www.jmir.org/2013/7/e131/", url="http://www.ncbi.nlm.nih.gov/pubmed/23819959" } @Article{info:doi/10.2196/jmir.2615, author="Xie, Bo and Wang, Mo and Feldman, Robert and Zhou, Le", title="Internet Use Frequency and Patient-Centered Care: Measuring Patient Preferences for Participation Using the Health Information Wants Questionnaire", journal="J Med Internet Res", year="2013", month="Jul", day="01", volume="15", number="7", pages="e132", keywords="patient-centered care", keywords="patient preference", keywords="shared decision-making", keywords="patient participation", keywords="Internet", abstract="Background: The Internet is bringing fundamental changes to medical practice through improved access to health information and participation in decision making. However, patient preferences for participation in health care vary greatly. Promoting patient-centered health care requires an understanding of the relationship between Internet use and a broader range of preferences for participation than previously measured. Objective: To explore (1) whether there is a significant relationship between Internet use frequency and patients' overall preferences for obtaining health information and decision-making autonomy, and (2) whether the relationships between Internet use frequency and information and decision-making preferences differ with respect to different aspects of health conditions. Methods: The Health Information Wants Questionnaire (HIWQ) was administered to gather data about patients' preferences for the (1) amount of information desired about different aspects of a health condition, and (2) level of decision-making autonomy desired across those same aspects. Results: The study sample included 438 individuals: 226 undergraduates (mean age 20; SD 2.15) and 212 community-dwelling older adults (mean age 72; SD 9.00). A significant difference was found between the younger and older age groups' Internet use frequencies, with the younger age group having significantly more frequent Internet use than the older age group (younger age group mean 5.98, SD 0.33; older age group mean 3.50, SD 2.00; t436=17.42, P<.01). Internet use frequency was positively related to the overall preference rating ($\gamma$=.15, P<.05), suggesting that frequent Internet users preferred significantly more information and decision making than infrequent Internet users. The relationships between Internet use frequency and different types of preferences varied: compared with infrequent Internet users, frequent Internet users preferred more information but less decision making for diagnosis ($\gamma$=.57, P<.01); more information and more decision-making autonomy for laboratory test ($\gamma$=.15, P<.05), complementary and alternative medicine ($\gamma$=.32, P<.01), and self-care ($\gamma$=.15, P<.05); and less information but more decision-making autonomy for the psychosocial ($\gamma$=-.51, P<.01) and health care provider ($\gamma$=-.27, P<.05) aspects. No significant difference was found between frequent and infrequent Internet users in their preferences for treatment information and decision making. Conclusions: Internet use frequency has a positive relationship with the overall preferences for obtaining health information and decision-making autonomy, but its relationship with different types of preferences varies. These findings have important implications for medical practice. ", doi="10.2196/jmir.2615", url="http://www.jmir.org/2013/7/e132/", url="http://www.ncbi.nlm.nih.gov/pubmed/23816979" } @Article{info:doi/10.2196/jmir.2476, author="van der Eijk, Martijn and Faber, J. Marjan and Aarts, WM Johanna and Kremer, AM Jan and Munneke, Marten and Bloem, R. Bastiaan", title="Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions", journal="J Med Internet Res", year="2013", month="Jun", day="25", volume="15", number="6", pages="e115", keywords="community networks", keywords="Internet", keywords="patient-centered care", keywords="long-term care", keywords="chronic disease", keywords="Parkinson disease", abstract="Background: Our health care system faces major threats as the number of people with multiple chronic conditions rises dramatically. Objective: To study the use of Online Health Communities (OHCs) as a tool to facilitate high-quality and affordable health care for future generations. Methods: OHCs are Internet-based platforms that unite either a group of patients, a group of professionals, or a mixture of both. Members interact using modern communication technologies such as blogs, chats, forums, and wikis. We illustrate the use of OHCs for ParkinsonNet, a professional network for Parkinson disease whose participants---both patients and professionals---use various types of OHCs to deliver patient-centered care. Results: We discuss several potential applications in clinical practice. First, due to rapid advances in medical knowledge, many health professionals lack sufficient expertise to address the complex health care needs of chronic patients. OHCs can be used to share experiences, exchange knowledge, and increase disease-specific expertise. Second, current health care delivery is fragmented, as many patients acquire relationships with multiple professionals and institutions. OHCs can bridge geographical distances and enable interdisciplinary collaboration across institutions and traditional echelons. Third, chronic patients lack adequate tools to self-manage their disease. OHCs can be used to actively engage and empower patients in their health care process and to tailor care to their individual needs. Personal health communities of individual patients offer unique opportunities to store all medical information in one central place, while allowing transparent communication across all members of each patient's health care team. Conclusions: OHCs are a powerful tool to address some of the challenges chronic care faces today. OHCs help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice. ", doi="10.2196/jmir.2476", url="http://www.jmir.org/2013/6/e115/", url="http://www.ncbi.nlm.nih.gov/pubmed/23803284" } @Article{info:doi/10.2196/jmir.2323, author="Wojtowicz, Magdalena and Day, Victor and McGrath, J. Patrick", title="Predictors of Participant Retention in a Guided Online Self-Help Program for University Students: Prospective Cohort Study", journal="J Med Internet Res", year="2013", month="May", day="22", volume="15", number="5", pages="e96", keywords="self-help", keywords="online treatment", keywords="Web-based", keywords="retention", keywords="dropouts", keywords="theory of planned behavior", abstract="Background: Attrition is a persistent issue in online self-help programs, but limited research is available on reasons for attrition or successful methods for improving participant retention. One potential approach to understanding attrition and retention in such programs is to examine person-related variables (eg, beliefs and attitudes) that influence behavior. Theoretical models, such as the Theory of Planned Behavior, that describe conditions influencing human behavior may provide a useful framework for predicting participant retention in online-based program. Objective: We examined predictors of participant retention in a guided online anxiety, depression, and stress self-help program for university students using the theory of planned behavior. We also explored whether age, symptom severity, and type of coaching (ie, email vs phone) affected participant retention. Methods: 65 university students with mild to moderate depression, anxiety, and stress were enrolled in this prospective cohort study. Participants completed a questionnaire based on the theory of planned behavior prior to commencing the online-based program and the Depression Anxiety and Stress Scale (DASS) during the assessment module of the program. Participant retention was operationalized as the number of program modules completed. Results: Perceived control over completing the online program significantly predicted intention to complete the program (F3,62=6.7; P=.001; adjusted R2=.2; standardized beta=.436, P=.001). Age (standardized beta=.319, P=.03) and perceived behavioral control (standardized beta=.295, P=.05) predicted the number of program modules completed (F3,61=3.20, P=.03, adjusted R2 =.11). Initial level of distress (ie, symptom severity) did not predict participant retention (P=.55). Participants who chose phone-based coaching completed more program modules than participants who chose email-based coaching (Mann-Whitney's U=137; P=.004). Conclusions: Participants' age, level of perceived behavioral control, and choice of interaction (ie, phone-based or email-based coaching) were found to influence retention in this online-based program. ", doi="10.2196/jmir.2323", url="http://www.jmir.org/2013/5/e96/", url="http://www.ncbi.nlm.nih.gov/pubmed/23697614" } @Article{info:doi/10.2196/jmir.2375, author="Zheng, Hua and Rosal, C. Milagros and Oatis, A. Carol and Li, Wenjun and Franklin, D. Patricia", title="Tailored System to Deliver Behavioral Intervention and Manage Data in Randomized Trials", journal="J Med Internet Res", year="2013", month="Apr", day="11", volume="15", number="4", pages="e58", keywords="structured behavioral intervention", keywords="intervention fidelity", keywords="clinical translational research", keywords="intervention delivery support system", abstract="Background: The integrity of behavioral intervention trials depends on consistent intervention delivery, and uniform, comprehensive process data collection. It can be challenging in practice due to complex human interactions involved. Objective: We sought to design a system to support the fidelity of intervention delivery and efficient capture of qualitative and quantitative process data for a telephone-delivered behavioral counseling intervention to increase physical activity and function after total knee replacement surgery. Methods: A tailored system was designed to prompt the intervention coach in the delivery of a 5 step counseling protocol to support intervention fidelity across patients. System features included structured data components, automated data exchange functions, user-friendly data capture screens, and real-time surveillance reporting. The system structured the capture of patient goals and open-ended conversation. Results: The system recorded intervention process data from each of 12 sessions held with the 92 intervention patients. During the trial, 992 telephone sessions were conducted, and more than 97\% (4816/4960) of intervention process data fields were completed in the system. The coach spent 5-10 minutes preparing for each counseling call using system-generated summaries of historical data and 10-15 minutes entering intervention process data following each telephone session. Conclusions: This intervention delivery system successfully supported the delivery of a structured behavioral counseling intervention and collection of intervention process data. It addressed the unique needs of clinical behavioral intervention trials, and had promising potential to facilitate high-fidelity translation of the intervention to broad clinical practice and Web-based multicenter clinical trials in the future. ", doi="10.2196/jmir.2375", url="http://www.jmir.org/2013/4/e58/", url="http://www.ncbi.nlm.nih.gov/pubmed/23579207" } @Article{info:doi/10.2196/jmir.2286, author="Close, Sharron and Smaldone, Arlene and Fennoy, Ilene and Reame, Nancy and Grey, Margaret", title="Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome", journal="J Med Internet Res", year="2013", month="Mar", day="19", volume="15", number="3", pages="e48", keywords="patient recruitment", keywords="research subject recruitment", keywords="health information technology", keywords="social networking", keywords="Klinefelter syndrome", abstract="Background: Recruiting pediatric samples for research may be challenging due to parental mistrust of the research process, privacy concerns, and family time constraints. Recruitment of children with chronic and genetic conditions may further complicate the enrollment process. Objective: In this paper, we describe the methodological challenges of recruiting children for research and provide an exemplar of how the use of information technology (IT) strategies with social networking may improve access to difficult-to-reach pediatric research participants. Methods: We conducted a cross-sectional descriptive study of boys between the ages of 8 and 18 years with Klinefelter syndrome. This study presented unique challenges for recruitment of pediatric participants. These challenges are illustrated by the report of recruitment activities developed for the study. We reviewed the literature to explore the issues of recruiting children for research using conventional and IT approaches. Success rates of conventional recruitment approaches, such as brochures, flyers in medical offices, and physician referrals, are compared with IT-based outreach. The IT approaches included teleconferencing via a Klinefelter syndrome support group, services of a Web-based commercial recruitment-matching company, and the development of a university-affiliated research recruitment website with the use of paid advertising on a social networking website (Facebook). Results: Over a 3-month period, dissemination of over 150 recruitment brochures and flyers placed in a large urban hospital and hospital-affiliated clinical offices, with 850 letters to physicians and patients were not successful. Within the same period, face-to-face recruitment in the clinical setting yielded 4 (9\%) participants. Using Web-based and social networking approaches, 39 (91\%) agreed to participate in the study. With these approaches, 5 (12\%) were recruited from the national Klinefelter syndrome advocacy group, 8 (19\%) from local and teleconference support groups, 10 (23\%) from a Web-based research recruitment program, and 16 (37\%) from the university-affiliated recruitment website. For the initial 6 months, the university website was viewed approximately 2 to 3 times per day on average. An advertisement placed on a social networking site for 1 week increased website viewing to approximately 63 visits per day. Out of 112 families approached using all of these methods, 43 (38\%) agreed to participate. Families who declined cited either travel distance to the study site (15, 22\%) or unwillingness to disclose the Klinefelter syndrome diagnosis to their sons (54, 78\%) as the reasons for nonparticipation. Conclusions: Use of Web-based technologies enhances the recruitment of difficult-to-reach populations. Of the many approaches employed in this study, the university-affiliated recruitment website supported by a Facebook advertisement appeared to be the most successful. Research grant budgets should include expenses for website registration and maintenance fees as well as online advertisements on social networking websites. Tracking of recruitment referral sources may be helpful in planning future recruitment campaigns. ", doi="10.2196/jmir.2286", url="http://www.jmir.org/2013/3/e48/", url="http://www.ncbi.nlm.nih.gov/pubmed/23512442" } @Article{info:doi/10.2196/jmir.2439, author="Stellefson, Michael and Chaney, Beth and Barry, E. Adam and Chavarria, Enmanuel and Tennant, Bethany and Walsh-Childers, Kim and Sriram, P.S and Zagora, Justin", title="Web 2.0 Chronic Disease Self-Management for Older Adults: A Systematic Review", journal="J Med Internet Res", year="2013", month="Feb", day="14", volume="15", number="2", pages="e35", keywords="chronic disease", keywords="self-care", keywords="internet", keywords="social media", abstract="Background: Participatory Web 2.0 interventions promote collaboration to support chronic disease self-management. Growth in Web 2.0 interventions has led to the emergence of e-patient communication tools that enable older adults to (1) locate and share disease management information and (2) receive interactive healthcare advice. The evolution of older e-patients contributing to Web 2.0 health and medical forums has led to greater opportunities for achieving better chronic disease outcomes. To date, there are no review articles investigating the planning, implementation, and evaluation of Web 2.0 chronic disease self-management interventions for older adults. Objective: To review the planning, implementation, and overall effectiveness of Web 2.0 self-management interventions for older adults (mean age ? 50) with one or more chronic disease(s). Methods: A systematic literature search was conducted using six popular health science databases. The RE-AIM (Reach, Efficacy, Adoption, Implementation and Maintenance) model was used to organize findings and compute a study quality score (SQS) for 15 reviewed articles. Results: Most interventions were adopted for delivery by multidisciplinary healthcare teams and tested among small samples of white females with diabetes. Studies indicated that Web 2.0 participants felt greater self-efficacy for managing their disease(s) and benefitted from communicating with health care providers and/or website moderators to receive feedback and social support. Participants noted asynchronous communication tools (eg, email, discussion boards) and progress tracking features (eg, graphical displays of uploaded personal data) as being particularly useful for self-management support. Despite high attrition being noted as problematic, this review suggests that greater Web 2.0 engagement may be associated with improvements in health behaviors (eg, physical activity) and health status (eg, HRQoL). However, few studies indicated statistically significant improvements in medication adherence, biological outcomes, or health care utilization. Mean SQS scores were notably low (mean=63\%, SD 18\%). Studies were judged to be weakest on the Maintenance dimension of RE-AIM; 13 reviewed studies (87\%) did not describe any measures taken to sustain Web 2.0 effects past designated study time periods. Detailed process and impact evaluation frameworks were also missing in almost half (n=7) of the reviewed interventions. Conclusions: There is need for a greater understanding of the costs and benefits associated with using patient-centered Web 2.0 technologies for chronic disease self-management. More research is needed to determine whether the long-term effectiveness of these programs is sustainable among larger, more diverse samples of chronically ill patients. The effective translation of new knowledge, social technologies, and engagement techniques will likely result in novel approaches for empowering, engaging, and educating older adults with chronic disease. ", doi="10.2196/jmir.2439", url="http://www.jmir.org/2013/2/e35/", url="http://www.ncbi.nlm.nih.gov/pubmed/23410671" } @Article{info:doi/10.2196/jmir.2360, author="Emmert, Martin and Sander, Uwe and Pisch, Frank", title="Eight Questions About Physician-Rating Websites: A Systematic Review", journal="J Med Internet Res", year="2013", month="Feb", day="01", volume="15", number="2", pages="e24", keywords="Physician rating websites", keywords="patient narratives", keywords="public reporting", keywords="transparency", keywords="systematic review", abstract="Background: Physician-rating websites are currently gaining in popularity because they increase transparency in the health care system. However, research on the characteristics and content of these portals remains limited. Objective: To identify and synthesize published evidence in peer-reviewed journals regarding frequently discussed issues about physician-rating websites. Methods: Peer-reviewed English and German language literature was searched in seven databases (Medline (via PubMed), the Cochrane Library, Business Source Complete, ABI/Inform Complete, PsycInfo, Scopus, and ISI web of knowledge) without any time constraints. Additionally, reference lists of included studies were screened to assure completeness. The following eight previously defined questions were addressed: 1) What percentage of physicians has been rated? 2) What is the average number of ratings on physician-rating websites? 3) Are there any differences among rated physicians related to socioeconomic status? 4) Are ratings more likely to be positive or negative? 5) What significance do patient narratives have? 6) How should physicians deal with physician-rating websites? 7) What major shortcomings do physician-rating websites have? 8) What recommendations can be made for further improvement of physician-rating websites? Results: Twenty-four articles published in peer-reviewed journals met our inclusion criteria. Most studies were published by US (n=13) and German (n=8) researchers; however, the focus differed considerably. The current usage of physician-rating websites is still low but is increasing. International data show that 1 out of 6 physicians has been rated, and approximately 90\% of all ratings on physician-rating websites were positive. Although often a concern, we could not find any evidence of ``doctor-bashing''. Physicians should not ignore these websites, but rather, monitor the information available and use it for internal and ex-ternal purpose. Several shortcomings limit the significance of the results published on physician-rating websites; some recommendations to address these limitations are presented. Conclusions: Although the number of publications is still low, physician-rating websites are gaining more attention in research. But the current condition of physician-rating websites is lacking. This is the case both in the United States and in Germany. Further research is necessary to increase the quality of the websites, especially from the patients' perspective. ", doi="10.2196/jmir.2360", url="http://www.jmir.org/2013/2/e24/", url="http://www.ncbi.nlm.nih.gov/pubmed/23372115" } @Article{info:doi/10.2196/jmir.2068, author="Hewitt-Taylor, Jaqui and Bond, S. Carol", title="What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards", journal="J Med Internet Res", year="2012", month="Nov", day="08", volume="14", number="6", pages="e155", keywords="Physician-patient relations", keywords="consumer health informatics", keywords="eHealth", keywords="participatory medicine", abstract="Background: People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards. Objective: The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor's role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff. Methods: The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories. Results: The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors. Conclusions: People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor's function in terms of gatekeeping resources could create difficulties for them in this respect. ", doi="10.2196/jmir.2068", url="http://www.jmir.org/2012/6/e155/", url="http://www.ncbi.nlm.nih.gov/pubmed/23137788" } @Article{info:doi/10.2196/jmir.2080, author="den Breejen, ME Elvira and Nelen, LDM Willianne and Knijnenburg, M.L Jose and Burgers, S. Jako and Hermens, PMG Rosella and Kremer, AM Jan", title="Feasibility of a Wiki as a Participatory Tool for Patients in Clinical Guideline Development", journal="J Med Internet Res", year="2012", month="Oct", day="26", volume="14", number="5", pages="e138", keywords="Wiki", keywords="patient participation", keywords="infertility", keywords="Web 2.0", keywords="guideline development", abstract="Background: Patient participation is essential in developing high-quality guidelines but faces practical challenges. Evidence on timing, methods, evaluations, and outcomes of methodologies for patient participation in guideline development is lacking. Objective: To assess the feasibility of a wiki as a participatory tool for patients in the development of a guideline on infertility determined by (1) use of the wiki (number of page views and visitors), (2) benefits of the wiki (ie, number, content, and eligibility of the recommendations to be integrated into the guideline), and (3) patients' facilitators of and barriers to adoption, and the potential challenges to be overcome in improving this wiki. Methods: To obtain initial content for the wiki, we conducted in-depth interviews (n = 12) with infertile patients. Transcripts from the interviews were translated into 90 draft recommendations. These were presented on a wiki. Over 7 months, infertile patients were invited through advertisements or mailings to formulate new or modify existing recommendations. After modifying the recommendations, we asked patients to select their top 5 or top 3 recommendations for each of 5 sections on fertility care. Finally, the guideline development group assessed the eligibility of the final set of recommendations within the scope of the guideline. We used a multimethod evaluation strategy to assess the feasibility of the wiki as a participatory tool for patients in guideline development. Results: The wiki attracted 298 unique visitors, yielding 289 recommendations. We assessed the 21 recommendations ranked as the top 5 or top 3 for their eligibility for being integrated into the clinical practice guideline. The evaluation identified some challenges needed to be met to improve the wiki tool, concerning its ease of use, website content and layout, and characteristics of the wiki tool. Conclusions: The wiki is a promising and feasible participatory tool for patients in guideline development. A modified version of this tool including new modalities (eg, automatically limiting the number and length of recommendations, using a fixed format for recommendations, including a motivation page, and adding a continuous prioritization system) should be developed and evaluated in a patient-centered design. ", doi="10.2196/jmir.2080", url="http://www.jmir.org/2012/5/e138/", url="http://www.ncbi.nlm.nih.gov/pubmed/23103790" } @Article{info:doi/10.2196/jmir.2280, author="Greaves, Felix and Pape, J. Utz and Lee, Henry and Smith, M. Dianna and Darzi, Ara and Majeed, Azeem and Millett, Christopher", title="Patients' Ratings of Family Physician Practices on the Internet: Usage and Associations With Conventional Measures of Quality in the English National Health Service", journal="J Med Internet Res", year="2012", month="Oct", day="17", volume="14", number="5", pages="e146", keywords="Patient Experience", keywords="Primary Care", keywords="Internet", keywords="Quality", abstract="Background: Patients are increasingly rating their family physicians on the Internet in the same way as they might rate a hotel on TripAdvisor or a seller on eBay, despite physicians' concerns about this process. Objective: This study aims to examine the usage of NHS Choices, a government website that encourages patients to rate the quality of family practices in England, and associations between web-based patient ratings and conventional measures of patient experience and clinical quality in primary care. Methods: We obtained all (16,952) ratings of family practices posted on NHS Choices between October 2009 and December 2010. We examined associations between patient ratings and family practice and population characteristics. Associations between ratings and survey measures of patient experience and clinical outcomes were examined. Results: 61\% of the 8089 family practices in England were rated, and 69\% of ratings would recommend their family practice. Practices serving younger, less deprived, and more densely populated areas were more likely to be rated. There were moderate associations with survey measures of patient experience (Spearman $\rho$ 0.37?0.48, P<.001 for all 5 variables), but only weak associations with measures of clinical process and outcome (Spearman $\rho$ less than {\textpm}0.18, P<.001 for 6 of 7 variables). Conclusion: The frequency of patients rating their family physicians on the Internet is variable in England, but the ratings are generally positive and are moderately associated with other measures of patient experience and weakly associated with clinical quality. Although potentially flawed, patient ratings on the Internet may provide an opportunity for organizational learning and, as it becomes more common, another lens to look at the quality of primary care. ", doi="10.2196/jmir.2280", url="http://www.jmir.org/2012/5/e146/", url="http://www.ncbi.nlm.nih.gov/pubmed/23076301" } @Article{info:doi/10.2196/jmir.2143, author="Kim, Jeongeun and Park, Hyeoun-Ae", title="Development of a Health Information Technology Acceptance Model Using Consumers' Health Behavior Intention", journal="J Med Internet Res", year="2012", month="Oct", day="01", volume="14", number="5", pages="e133", keywords="Technology Acceptance Model", keywords="health behavior", keywords="intention", keywords="consumer", abstract="Background: For effective health promotion using health information technology (HIT), it is mandatory that health consumers have the behavioral intention to measure, store, and manage their own health data. Understanding health consumers' intention and behavior is needed to develop and implement effective and efficient strategies. Objective: To develop and verify the extended Technology Acceptance Model (TAM) in health care by describing health consumers' behavioral intention of using HIT. Methods: This study used a cross-sectional descriptive correlational design. We extended TAM by adding more antecedents and mediating variables to enhance the model's explanatory power and to make it more applicable to health consumers' behavioral intention. Additional antecedents and mediating variables were added to the hypothetical model, based on their theoretical relevance, from the Health Belief Model and theory of planned behavior, along with the TAM. We undertook structural equation analysis to examine the specific nature of the relationship involved in understanding consumers' use of HIT. Study participants were 728 members recruited from three Internet health portals in Korea. Data were collected by a Web-based survey using a structured self-administered questionnaire. Results: The overall fitness indices for the model developed in this study indicated an acceptable fit of the model. All path coefficients were statistically significant. This study showed that perceived threat, perceived usefulness, and perceived ease of use significantly affected health consumers' attitude and behavioral intention. Health consumers' health status, health belief and concerns, subjective norm, HIT characteristics, and HIT self-efficacy had a strong indirect impact on attitude and behavioral intention through the mediators of perceived threat, perceived usefulness, and perceived ease of use. Conclusions: An extended TAM in the HIT arena was found to be valid to describe health consumers' behavioral intention. We categorized the concepts in the extended TAM into 3 domains: health zone, information zone, and technology zone. ", doi="10.2196/jmir.2143", url="http://www.jmir.org/2012/5/e133/", url="http://www.ncbi.nlm.nih.gov/pubmed/23026508" } @Article{info:doi/10.2196/jmir.2157, author="Greaves, Felix and Millett, Christopher", title="Consistently Increasing Numbers of Online Ratings of Healthcare in England", journal="J Med Internet Res", year="2012", month="Jun", day="29", volume="14", number="3", pages="e94", keywords="online reviews", keywords="quality transparency", keywords="public reporting", doi="10.2196/jmir.2157", url="http://www.jmir.org/2012/3/e94/", url="http://www.ncbi.nlm.nih.gov/pubmed/22742977" } @Article{info:doi/10.2196/jmir.1948, author="Hottes, Salway Travis and Farrell, Janine and Bondyra, Mark and Haag, Devon and Shoveller, Jean and Gilbert, Mark", title="Internet-Based HIV and Sexually Transmitted Infection Testing in British Columbia, Canada: Opinions and Expectations of Prospective Clients", journal="J Med Internet Res", year="2012", month="Mar", day="06", volume="14", number="2", pages="e41", keywords="HIV", keywords="human immunodeficiency virus", keywords="sexually transmitted diseases", abstract="Background: The feasibility and acceptability of Internet-based sexually transmitted infection (STI) testing have been demonstrated; however, few programs have included testing for human immunodeficiency virus (HIV). In British Columbia, Canada, a new initiative will offer online access to chlamydia, gonorrhea, syphilis, and HIV testing, integrated with existing clinic-based services. We presented the model to gay men and other men who have sex with men (MSM) and existing clinic clients through a series of focus groups. Objective: To identify perceived benefits, concerns, and expectations of a new model for Internet-based STI and HIV testing among potential end users. Methods: Participants were recruited through email invitations, online classifieds, and flyers in STI clinics. A structured interview guide was used. Focus groups were audio recorded, and an observer took detailed field notes. Analysts then listened to audio recordings to validate field notes. Data were coded and analyzed using a scissor-and-sort technique. Results: In total, 39 people participated in six focus groups. Most were MSM, and all were active Internet users and experienced with STI/HIV testing. Perceived benefits of Internet-based STI testing included anonymity, convenience, and client-centered control. Salient concerns were reluctance to provide personal information online, distrust of security of data provided online, and the need for comprehensive pretest information and support for those receiving positive results, particularly for HIV. Suggestions emerged for mitigation of these concerns: provide up-front and detailed information about the model, ask only the minimal information required for testing, give positive results only by phone or in person, and ensure that those testing positive are referred for counseling and support. End users expected Internet testing to offer continuous online service delivery, from booking appointments, to transmitting information to the laboratory, to getting prescriptions. Most participants said they would use the service or recommend it to others. Those who indicated they would be unlikely to use it generally either lived near an STI clinic or routinely saw a family doctor with whom they were comfortable testing. Participants expected that the service would provide the greatest benefit to individuals who do not already have access to sensitive sexual health services, are reluctant to test due to stigma, or want to take immediate action (eg, because of a recent potential STI/HIV exposure). Conclusions: Internet-based STI/HIV testing has the potential to reduce barriers to testing, as a complement to existing clinic-based services. Trust in the new online service, however, is a prerequisite to client uptake and may be engendered by transparency of information about the model, and by accounting for concerns related to confidentiality, data usage, and provision of positive (especially HIV) results. Ongoing evaluation of this new model will be essential to its success and to the confidence of its users. ", doi="10.2196/jmir.1948", url="http://www.jmir.org/2012/2/e41/", url="http://www.ncbi.nlm.nih.gov/pubmed/22394997" } @Article{info:doi/10.2196/jmir.2003, author="Gao, Gordon Guodong and McCullough, S. Jeffrey and Agarwal, Ritu and Jha, K. Ashish", title="A Changing Landscape of Physician Quality Reporting: Analysis of Patients' Online Ratings of Their Physicians Over a 5-Year Period", journal="J Med Internet Res", year="2012", month="Feb", day="24", volume="14", number="1", pages="e38", keywords="Physician quality", keywords="online reviews", keywords="patient empowerment", keywords="quality transparency", keywords="public reporting", abstract="Background: Americans increasingly post and consult online physician rankings, yet we know little about this new phenomenon of public physician quality reporting. Physicians worry these rankings will become an outlet for disgruntled patients. Objective: To describe trends in patients' online ratings over time, across specialties, to identify what physician characteristics influence online ratings, and to examine how the value of ratings reflects physician quality. Methods: We used data from RateMDs.com, which included over 386,000 national ratings from 2005 to 2010 and provided insight into the evolution of patients' online ratings. We obtained physician demographic data from the US Department of Health and Human Services' Area Resource File. Finally, we matched patients' ratings with physician-level data from the Virginia Medical Board and examined the probability of being rated and resultant rating levels. Results: We estimate that 1 in 6 practicing US physicians received an online review by January 2010. Obstetrician/gynecologists were twice as likely to be rated (P < .001) as other physicians. Online reviews were generally quite positive (mean 3.93 on a scale of 1 to 5). Based on the Virginia physician population, long-time graduates were more likely to be rated, while physicians who graduated in recent years received higher average ratings (P < .001). Patients gave slightly higher ratings to board-certified physicians (P = .04), those who graduated from highly rated medical schools (P = .002), and those without malpractice claims (P = .1). Conclusion: Online physician rating is rapidly growing in popularity and becoming commonplace with no evidence that they are dominated by disgruntled patients. There exist statistically significant correlations between the value of ratings and physician experience, board certification, education, and malpractice claims, suggesting a positive correlation between online ratings and physician quality. However, the magnitude is small. The average number of ratings per physician is still low, and most rating variation reflects evaluations of punctuality and staff. Understanding whether they truly reflect better care and how they are used will be critically important. ", doi="10.2196/jmir.2003", url="http://www.jmir.org/2012/1/e38/", url="http://www.ncbi.nlm.nih.gov/pubmed/22366336" } @Article{info:doi/10.2196/jmir.1600, author="Powell, John and Inglis, Nadia and Ronnie, Jennifer and Large, Shirley", title="The Characteristics and Motivations of Online Health Information Seekers: Cross-Sectional Survey and Qualitative Interview Study", journal="J Med Internet Res", year="2011", month="Feb", day="23", volume="13", number="1", pages="e20", keywords="information seeking behaviour", keywords="internet", keywords="patient-provider communication", keywords="health services research", abstract="Background: Most households in the United Kingdom have Internet access, and health-related Internet use is increasing. The National Health Service (NHS) Direct website is the major UK provider of online health information. Objective: Our objective was to identify the characteristics and motivations of online health information seekers accessing the NHS Direct website, and to examine the benefits and challenges of the health Internet. Methods: We undertook an online questionnaire survey, offered to users of the NHS Direct website. A subsample of survey respondents participated in in-depth, semistructured, qualitative interviews by telephone or instant messaging/email. Questionnaire results were analyzed using chi-square statistics. Thematic coding with constant comparison was used for interview transcript analysis. Results: In total 792 respondents completed some or all of the survey: 71.2\% (534/750 with data available) were aged under 45 years, 67.4\% (511/758) were female, and 37.7\% (286/759) had university-level qualifications. They sought information for themselves (545/781, 69.8\%), someone else (172/781, 22.0\%), or both (64/781, 8.2\%). Women were more likely than men to seek help for someone else or both themselves and someone else (168/509 vs 61/242, $\chi$22 = 6.35, P = .04). Prior consultation with a health professional was reported by 44.9\% (346/770), although this was less common in younger age groups (<36 years) ($\chi$21 = 24.22, P < .001). Participants aged 16 to 75 years (n = 26, 20 female, 6 male) were recruited for interview by telephone (n = 23) and instant messaging/email (n = 3). Four major interview themes were identified: motivations for seeking help online; benefits of seeking help in this way and some of the challenges faced; strategies employed in navigating online health information provision and determining what information to use and to trust; and specific comments regarding the NHS Direct website service. Within the motivation category, four concepts emerged: the desire for reassurance; the desire for a second opinion to challenge other information; the desire for greater understanding to supplement other information; and perceived external barriers to accessing information through traditional sources. The benefits clustered around three theme areas: convenience, coverage, and anonymity. Various challenges were discussed but no prominent theme emerged. Navigating online health information and determining what to trust was regarded as a ``common sense'' activity, and brand recognition was important. Specific comments about NHS Direct included the perception that the online service was integrated with traditional service provision. Conclusions: This study supports a model of evolutionary rather than revolutionary change in online health information use. Given increasing resource constraints, the health care community needs to seek ways of promoting efficient and appropriate health service use, and should aim to harness the potential benefits of the Internet, informed by an understanding of how and why people go online for health. ", doi="10.2196/jmir.1600", url="http://www.jmir.org/2011/1/e20/" } @Article{info:doi/10.2196/jmir.1591, author="Jones, Ray and Sharkey, Siobhan and Smithson, Janet and Ford, Tamsin and Emmens, Tobit and Hewis, Elaine and Sheaves, Bryony and Owens, Christabel", title="Using Metrics to Describe the Participative Stances of Members Within Discussion Forums", journal="J Med Internet Res", year="2011", month="Jan", day="10", volume="13", number="1", pages="e3", keywords="Online communities", keywords="metrics", keywords="discussion forums", keywords="self-harm", keywords="moderation", keywords="participative stance", abstract="Background: Researchers using forums and online focus groups need to ensure they are safe and need tools to make best use of the data. We explored the use of metrics that would allow better forum management and more effective analysis of participant contributions. Objective: To report retrospectively calculated metrics from self-harm discussion forums and to assess whether metrics add to other methods such as discourse analysis. We asked (1) which metrics are most useful to compare and manage forums, and (2) how metrics can be used to identify the participative stances of members to help manage discussion forums. Methods: We studied the use of metrics in discussion forums on self-harm. SharpTalk comprised five discussion forums, all using the same software but with different forum compositions. SharpTalk forums were similar to most moderated forums but combined support and general social chat with online focus groups discussing issues on self-harm. Routinely recorded time-stamp data were used to derive metrics of episodes, time online, pages read, and postings. We compared metrics from the forums with views from discussion threads and from moderators. We identified patterns of participants' online behavior by plotting scattergrams and identifying outliers and clusters within different metrics. Results: In comparing forums, important metrics seem to be number of participants, number of active participants, total time of all participants logged on in each 24 hours, and total number of postings by all participants in 24 hours. In examining participative stances, the important metrics were individuals' time logged per 24 hours, number of episodes, mean length of episodes, number of postings per 24 hours, and location within the forum of those postings. Metric scattergrams identified several participative stances: (1) the ``caretaker,'' who was ``always around,'' logged on for a much greater time than most other participants, posting but mainly in response to others and rarely initiating threads, (2) the ``butterfly,'' who ``flitted in and out,'' had a large number of short episodes, (3) two ``discussants,'' who initiated many more discussion threads than anybody else and posted proportionately less in the support room, (4) ``here for you,'' who posted frequently in the support room in response to other participants' threads, and (5) seven ``people in distress,'' who posted many comments in the support room in comparison with their total postings and tended to post on their own threads. Conclusions: Real-time metrics may be useful: (1) by offering additional ways of comparing different discussion forums helping with their management, and (2) by identifying participative stances of individuals so allowing better moderation and support of forums, and more effective use of the data collected. For this to happen, researchers need to publish metrics for their discussion forums and software developers need to offer more real-time metrics facilities. ", doi="10.2196/jmir.1591", url="http://www.jmir.org/2011/1/e3/", url="http://www.ncbi.nlm.nih.gov/pubmed/21239373" }