%0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60766 %T Health Care 2025: How Consumer-Facing Devices Change Health Management and Delivery %A Trinh,Simon %A Skoll,Devin %A Saxon,Leslie Ann %+ , Center for Body Computing, University of Southern California, 12015 East Waterfront Drive, Playa Vista, CA, 90094, United States, 1 310 448 5373, saxon@usc.edu %K decentralized %K digital health %K consumer %K health care %K COVID-19 %K wearables %K medical devices %K health management %K mHealth %K wearable %K well-being %K care delivery %D 2025 %7 23.4.2025 %9 Viewpoint %J J Med Internet Res %G English %X Embarking on a journey into the future of health care shaped by technological advances and the impact of the COVID-19 pandemic, we delve into the transformative landscape shaped by the integration of wearable technology, medically regulated devices, and advanced software. The ability to offer consumers unprecedented access to vital signs, advanced biomarkers, and environmental data enables a host of new capabilities to fill gaps in existing knowledge and permit individualized insights and education. Continuous monitoring enables individualized insights, emphasizing the need for a redefinition of health and human performance that is decentralized, dynamic, and personalized. The challenge lies in managing the massive amounts of continuous wearable data, necessitating new definitions of health data and secure practices. The COVID-19 pandemic has accelerated the adoption of digitalized consumer-facing diagnostics and software, transforming the traditional patient role. Consumers now have the tools to identify and understand an impending or existing disease state before they encounter traditional health care delivery health systems, making self-diagnosis commonplace. This shift empowers consumers to actively participate in their health, contributing to a new era where patients are in control of their well-being, from wellness to disease. Physicians in 2025 will engage with more informed and educated consumers, leveraging advanced analytic tools for diagnostics and streamlined patient management. Wearable devices play a pivotal role in enhancing patient engagement, while virtual reality and tailored software can be used by physicians to offer immersive learning experiences about conditions or upcoming procedures. Clinician decision support models and virtual care solutions will contribute to recruiting and maintaining health care providers amid a growing workforce shortage. Health care delivery organizations are transforming to improve outcomes at a lower cost, with partnerships with digital technology companies enabling innovative care models. This marks a historic moment where digital health and human performance solutions empower consumers to actively participate in their care. Physicians embrace digital tools, fostering richer patient partnerships, while health care organizations seize unprecedented opportunities for multilocation care delivery, addressing cost, workforce, and outcome challenges. %M 40267475 %R 10.2196/60766 %U https://www.jmir.org/2025/1/e60766 %U https://doi.org/10.2196/60766 %U http://www.ncbi.nlm.nih.gov/pubmed/40267475 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60681 %T A WeChat-Based Decision Aid Intervention to Promote Informed Decision-Making for Family Members Regarding the Genetic Testing of Patients With Colorectal Cancer: Randomized Controlled Trial %A Li,Huanhuan %A Zhao,Yanjie %A Li,Wei %A Wang,Wenxia %A Zhi,Shengze %A Wu,Yifan %A Zhong,Qiqing %A Wang,Rui %A Sun,Jiao %+ , School of Nursing, Jilin University, Number 965, Xinjiang Street, Changchun, Jilin, 130021, China, 86 13844879177, sunjiao@jlu.edu.cn %K decision aid %K genetic testing %K hereditary colorectal cancer %K informed decision-making %K RCT %K WeChat based %D 2025 %7 21.4.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Identifying patients with inherited colorectal cancer (CRC) syndromes offers many potential benefits. However, individuals often experience decisional conflict regarding genetic testing for CRC, and the uptake rate remains low. Given the growing popularity of genetic testing and the increasing demands on genetic service providers, strategies are needed to promote informed decision-making, increase genetic testing uptake among at-risk individuals, and ensure the rational use of genetic service resources. Objective: This study aims to determine whether a decision aid (DA) tool could promote informed decision-making among family members regarding the genetic testing of a patient with CRC. Methods: A single-center, parallel-group, randomized controlled trial was conducted. We randomized 82 family members of patients with CRC, who were involved in major medical decision-making for the patient, to either a DA intervention or usual care. The primary outcome was informed decision-making, assessed through measures of knowledge, decisional conflict, decision self-efficacy, and preparation for decision-making. Secondary outcomes included patients’ uptake of genetic counseling and testing, participants’ CRC screening behavior, healthy lifestyle scores, anxiety and depression levels, quality of life, and satisfaction with the intervention. Data were collected at baseline (T0), after the intervention (T1), and 3 months after the baseline survey (T2). The DA intervention and outcome assessments at T1 and T2 were delivered via WeChat. The effects of the intervention were analyzed using generalized estimating equation models. Results: Statistically significant improvements were observed in knowledge (T1: β=2.049, P<.001; T2: β=3.317, P<.001), decisional conflict (T1: β=–11.660, P<.001; T2: β=–17.587, P<.001), and decision self-efficacy (T1: β=15.353, P<.001; T2: β=22.337, P<.001) in the DA group compared with the usual care group at both T1 and T2. Additionally, the DA group showed significantly greater improvement in processed and red meat intake (β=–1.494, P<.001) at T1 and in healthy lifestyle scores (β=1.073, P=.03) at T2. No differences were found between the groups for other outcomes. Conclusions: A DA tool may be a safe, effective, and resource-efficient approach to facilitate informed decision-making about genetic testing. However, the current DA tool requires optimization and further evaluation—for example, by leveraging more advanced technology than WeChat to develop a simpler and more intelligent DA system. Trial Registration: Chinese Clinical Trial Registry ChiCTR2100048051; https://www.chictr.org.cn/showproj.html?proj=129054 %M 40258273 %R 10.2196/60681 %U https://www.jmir.org/2025/1/e60681 %U https://doi.org/10.2196/60681 %U http://www.ncbi.nlm.nih.gov/pubmed/40258273 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 11 %N %P e65674 %T The Effect of a Brief Video-Based Intervention to Improve AIDS Prevention in Older Men: Randomized Controlled Trial %A Huaju,Tian %A Rendie,Xie %A Lu,Xiao %A Mei,Li %A Yue,Luo %A Daiying,Zhang %A Yanhua,Chen %A Jianlan,Ren %K older men %K AIDS prevention %K video %K video-based intervention %K HIV %K AIDS %D 2025 %7 18.4.2025 %9 %J JMIR Public Health Surveill %G English %X Background: The AIDS epidemic among older people is becoming more serious. Evidence-based, acceptable, and effective preventive interventions are urgently needed. Video-based interventions have become an innovative way to change behaviors, and we have developed a brief video-based intervention named Sunset Without AIDS. Objective: In this study, we tested the effectiveness of a brief video-based intervention targeting older men’s understanding of AIDS prevention. Methods: A randomized controlled trial was conducted from June 20 to July 3, 2023. In total, 100 older men were randomly divided into the intervention group (n=50) and the control group (n=50) using the envelope extraction method. The intervention group was shown the Sunset Without AIDS video; the control group viewed a standard AIDS education video. A questionnaire was used to measure the effect of Sunset Without AIDS after 2 interventions. AIDS-related high-risk behaviors were followed up 1 and 3 months after the intervention. The difference was statistically significant at P≤.05. Results: After 2 interventions, the total awareness rates (%) of AIDS-related knowledge in the intervention and control groups were 84% (42/50) and 66% (33/50), respectively (P=.04). The mean stigma attitude scores of the 2 groups were 2.53 (SD 0.45) and 2.58 (SD 0.49), respectively (P=.55), but there was a statistically significant difference in the first dimension (fear of infection) between the 2 groups (P<.001). The mean positive scores of attitudes of AIDS-related high-risk behaviors of the 2 groups were 83.33 (SD 21.56) and 75.67 (SD 26.77), respectively (P=.58). In addition, 82% reported that they were satisfied with the educational content within the Sunset Without AIDS video. At 1- and 3-month follow-ups conducted after the intervention, participants in the 2 groups did not report AIDS-related high-risk behaviors. After watching the 2 videos, more people accepted and were satisfied with Sunset Without AIDS. Conclusions: Sunset Without AIDS could improve the ability of older men in China to follow best practices for AIDS prevention and provide a certain basis for the innovation of AIDS education in the older adult population. Trial Registration: Chinese Clinical Trial Registry, ChiCTR2100045708; https://www.chictr.org.cn/showproj.html?proj=125478 %R 10.2196/65674 %U https://publichealth.jmir.org/2025/1/e65674 %U https://doi.org/10.2196/65674 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e66846 %T Interactive Computer-Adaptive Chronic Kidney Disease (I-C-CKD) Education for Hospitalized African American Patients: Protocol for a Randomized Controlled Trial %A King,Akilah %A Omoniyi,Tayo %A Zasadzinski,Lindsay %A Gaspard,Cynthia %A Gorman,Denesha %A Saunders,Milda %+ Section of General Internal Medicine, Department of Medicine, University of Chicago, 5841 S. Maryland Ave. MC 2007, Chicago, IL, 60637, United States, 1 7737023962, asking@uchicago.edu %K chronic kidney disease %K computerized adaptive education %K end-stage kidney disease %K end-stage renal disease %K glomerular filtration rate %K kidney failure %K usual hospital care %K inpatient %D 2025 %7 17.4.2025 %9 Protocol %J JMIR Res Protoc %G English %X 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 %M 40245387 %R 10.2196/66846 %U https://www.researchprotocols.org/2025/1/e66846 %U https://doi.org/10.2196/66846 %U http://www.ncbi.nlm.nih.gov/pubmed/40245387 %0 Journal Article %@ 2561-1011 %I JMIR Publications %V 9 %N %P e67956 %T A Web-Based Tool to Perform a Values Clarification for Stroke Prevention in Patients With Atrial Fibrillation: Design and Preliminary Testing Study %A Dorsch,Michael P %A Flynn,Allen J %A Greer,Kaitlyn M %A Ganai,Sabah %A Barnes,Geoffrey D %A Zikmund-Fisher,Brian %K digital health %K atrial fibrillation %K stroke prevention %K shared decision-making %K values clarification %D 2025 %7 11.4.2025 %9 %J JMIR Cardio %G English %X Background: Atrial fibrillation (AF) is associated with an increased risk of stroke. Oral anticoagulation (OAC) is used for stroke prevention in AF, but it also increases bleeding risk. Clinical guidelines do not definitively recommend for or against OAC for patients with borderline stroke risk. Decision-making may benefit from values clarification exercises to communicate risk trade-offs. Objective: This study aimed to evaluate if a visual with a values clarification alters the understanding of the trade-offs of anticoagulation in AF. Methods: Participants aged 45‐64 years were recruited across the United States via an online survey. While answering the survey, they were asked to imagine they were newly diagnosed with AF with a CHA2DS2-VASc (congestive heart failure; hypertension; age ≥75 years [doubled]; type 2 diabetes; previous stroke, transient ischemic attack, or thromboembolism [doubled]; vascular disease; age 65 to 75 years; and sex category) score of 1 for men and 2 for women. Eligibility criteria included no diagnosis of AF and no prior OAC use. Participants were randomized to one of three conditions: (1) standard text-based information only (n=255), (2) visual aids showing stroke-risk probabilities (n=218), or (3) visual aids plus a values clarification exercise (visual+VC; n=200). Participants were subrandomized within the 2 visual-based groups to view either a gauge display or an icon array representing stroke risk. All participants read a hypothetical scenario of being newly diagnosed with AF and hypertension. The primary outcome was decision confidence as measured by the SURE (Sure of Myself; Understand Information; Risk-Benefit Ratio; Encouragement) test. Secondary measures included participants’ perceived stroke risk reduction, worry about stroke or bleeding, and likelihood to choose OAC. Results: A total of 673 participants completed the survey. The overall SURE test was 61.2% (156/255) for the standard, 66.5% (145/218) for the visual, and 67% (134/200) for the visual+VC group (visual vs standard P=.23; visual+VC vs standard P=.20). Participants were less likely to choose OAC in the visual groups (standard: mean 58.3, SD 30; visual: mean 51.4, SD 32; visual+VC: 51.9, SD 28; P=.03). Participants felt the reduction in stroke risk from an OAC was less in the visual groups (standard: mean 63.8, SD 22; visual: mean 54.2, SD 28; visual+VC: mean 58.6, SD 25; P<.001). Visualization methods (gauge vs icon array) showed no significant differences in overall SURE test results. Participants were less likely to choose OAC and perceived a smaller stroke risk reduction with gauge than icon array (OAC choice: gauge 48.8, icon array 55.4; P=.03; stroke risk reduction: gauge 52.1, icon array 60.4; P=.001). Conclusions: Visual aids can modestly affect decision confidence and perceptions regarding the benefits of OAC but do not significantly alter decision certainty in a scenario where the guidelines do not recommend for or against OAC. Future work should determine the role of a gauge versus icon array visual for decision-making in stroke prevention in AF. %R 10.2196/67956 %U https://cardio.jmir.org/2025/1/e67956 %U https://doi.org/10.2196/67956 %0 Journal Article %@ 2564-1891 %I JMIR Publications %V 5 %N %P e55248 %T Appropriateness of Web-Based Resources for Home Blood Pressure Measurement and Their Alignment With Guideline Recommendations, Readability, and End User Involvement: Environmental Scan of Web-Based Resources %A Clapham,Eleanor %A Picone,Dean %A Carmichael,Samuel %A Bonner,Carissa %A Chapman,Niamh %+ School of Health Sciences, Faculty of Medicine and Health, University of Sydney, Susan Wakil Health Building, University of Sydney, Western Avenue, Camperdown, Sydney, 2050, Australia, 61 473464291, niamh.chapman@sydney.edu.au %K readability %K online resources %K blood pressure guidelines %K end user %K home blood pressure measurement %K patient education %K educational resource %K self-education %K hypertension %D 2025 %7 3.4.2025 %9 Original Paper %J JMIR Infodemiology %G English %X Background: High blood pressure (≥140/90 mm Hg) is the most prominent mortality risk factor worldwide. Home blood pressure measurement (HBPM) is recommended for blood pressure (BP) management. HBPM is most effective to improve BP management when delivered with patient education. It is unknown whether web-based resources are appropriate for patient education for HBPM. Patient education should provide accurate, evidence-based information, communicate at an eighth grade reading level, and involve end users in development to meet the needs of adults of all health literacy levels. Using these criteria, this study aimed to determine the appropriateness of web-based HBPM resources. Objective: This study aimed to determine whether web-based resources are appropriate for HBPM education based on three research questions: (1) Do web-based resources provide evidence-based information that aligns with guideline recommendations? (2) Do they communicate at an appropriate reading level? (3) Do they involve end users in their development? Methods: An environmental scan of web-based resources for HBPM was conducted on Google (October 2022) using search terms developed with consumers (n=6). Resources were included if they were identified on the first page of the search findings, not paywalled, and in English. Resource appropriateness was appraised based on three criteria: (1) alignment of resource content to 23 recommendations for HBPM from 6 international guidelines, (2) being at an appropriate grade reading level as determined by a health literacy assessment software, and (3) having evidence of end user involvement in resource development. Results: None of the identified resources (n=24) aligned with all 23 of the guideline recommendations. All resources aligned with the recommendation to measure BP when seated, while few aligned with the recommendation to use a validated BP device (n=9, 38%). All resources exceeded the recommended eighth grade reading level (mean 11.8, range 8.8-17.0) and none reported evidence of patient end user involvement in development. Conclusions: None of the web-based resources met the criteria for appropriate education to support adults to measure BP at home. Resources should be developed with end users using health literacy tools and multimodal communication methods to ensure they are appropriate to meet the needs of patients. %M 40179388 %R 10.2196/55248 %U https://infodemiology.jmir.org/2025/1/e55248 %U https://doi.org/10.2196/55248 %U http://www.ncbi.nlm.nih.gov/pubmed/40179388 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e64028 %T Impact of a Symptom Checker App on Patient-Physician Interaction Among Self-Referred Walk-In Patients in the Emergency Department: Multicenter, Parallel-Group, Randomized, Controlled Trial %A Schmieding,Malte L %A Kopka,Marvin %A Bolanaki,Myrto %A Napierala,Hendrik %A Altendorf,Maria B %A Kuschick,Doreen %A Piper,Sophie K %A Scatturin,Lennart %A Schmidt,Konrad %A Schorr,Claudia %A Thissen,Alica %A Wäscher,Cornelia %A Heintze,Christoph %A Möckel,Martin %A Balzer,Felix %A Slagman,Anna %+ Institute of Medical Informatics, Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitéplatz 1, Berlin, 10117, Germany, 49 450 570425, malte.schmieding@charite.de %K digital health %K triage %K symptom checker %K patient-centered care %K eHealth apps %K mobile phone %K decision support systems %K consumer health information %K health literacy %K randomized controlled trials %K null results %K emergency care %K patient-physician-interaction %K patient satisfaction %D 2025 %7 2.4.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Symptom checker apps (SCAs) are layperson-facing tools that advise on whether and where to seek care, or possible diagnoses. Previous research has primarily focused on evaluating the accuracy, safety, and usability of their recommendations. However, studies examining SCAs’ impact on clinical care, including the patient-physician interaction and satisfaction with care, remain scarce. Objective: This study aims to evaluate the effects of an SCA on satisfaction with the patient-physician interaction in acute care settings. Additionally, we examined its influence on patients’ anxiety and trust in the treating physician. Methods: This parallel-group, randomized controlled trial was conducted at 2 emergency departments of an academic medical center and an emergency practice in Berlin, Germany. Low-acuity patients seeking care at these sites were randomly assigned to either self-assess their health complaints using a widely available commercial SCA (Ada Health) before their first encounter with the treating physician or receive usual care. The primary endpoint was patients’ satisfaction with the patient-physician interaction, measured by the Patient Satisfaction Questionnaire (PSQ). The secondary outcomes were patients’ satisfaction with care, their anxiety levels, and physicians’ satisfaction with the patient-physician interaction. We used linear mixed models to assess the statistical significance of primary and secondary outcomes. Exploratory descriptive analyses examined patients’ and physicians’ perceptions of the SCA’s utility and the frequency of patients questioning their physician’s authority. Results: Between April 11, 2022, and January 25, 2023, we approached 665 patients. A total of 363 patients were included in the intention-to-treat analysis of the primary outcome (intervention: n=173, control: n=190). PSQ scores in the intervention group were similar to those in the control group (mean 78.5, SD 20.0 vs mean 80.8, SD 19.6; estimated difference –2.4, 95% CI –6.3 to 1.1, P=.24). Secondary outcomes, including patients’ and physicians’ satisfaction with care and patient anxiety, showed no significant group differences (all P>.05). Patients in the intervention group were more likely to report that the SCA had a beneficial (66/164, 40.2%) rather than a detrimental (3/164, 1.8%) impact on the patient-physician interaction, with most reporting no effect (95/164, 57.9%). Similar patterns were observed regarding the SCA’s perceived effect on care. In both groups, physicians rarely reported that their authority had been questioned by a patient (intervention: 2/188, 1.1%; control: 4/184, 2.2%). While physicians more often found the SCA helpful rather than unhelpful, the majority indicated it was neither helpful nor unhelpful for the encounter. Conclusions: We found no evidence that the SCA improved satisfaction with the patient-physician interaction or care in an acute care setting. By contrast, both patients and their treating physicians predominantly described the SCA’s impact as beneficial. Our study did not identify negative effects of SCA use commonly reported in the literature, such as increased anxiety or diminished trust in health care professionals. Trial Registration: German Clinical Trial Register DRKS00028598; https://drks.de/search/en/trial/DRKS00028598/entails International Registered Report Identifier (IRRID): RR2-10.1186/s13063-022-06688-w %M 40173434 %R 10.2196/64028 %U https://www.jmir.org/2025/1/e64028 %U https://doi.org/10.2196/64028 %U http://www.ncbi.nlm.nih.gov/pubmed/40173434 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e68560 %T Online Health Information–Seeking in the Era of Large Language Models: Cross-Sectional Web-Based Survey Study %A Yun,Hye Sun %A Bickmore,Timothy %+ Khoury College of Computer Sciences, Northeastern University, 360 Huntington Avenue, Boston, MA, 02115, United States, 1 6173732000, yun.hy@northeastern.edu %K online health information–seeking %K large language models %K eHealth %K internet %K consumer health information %D 2025 %7 31.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: As large language model (LLM)–based chatbots such as ChatGPT (OpenAI) grow in popularity, it is essential to understand their role in delivering online health information compared to other resources. These chatbots often generate inaccurate content, posing potential safety risks. This motivates the need to examine how users perceive and act on health information provided by LLM-based chatbots. Objective: This study investigates the patterns, perceptions, and actions of users seeking health information online, including LLM-based chatbots. The relationships between online health information–seeking behaviors and important sociodemographic characteristics are examined as well. Methods: A web-based survey of crowd workers was conducted via Prolific. The questionnaire covered sociodemographic information, trust in health care providers, eHealth literacy, artificial intelligence (AI) attitudes, chronic health condition status, online health information source types, perceptions, and actions, such as cross-checking or adherence. Quantitative and qualitative analyses were applied. Results: Most participants consulted search engines (291/297, 98%) and health-related websites (203/297, 68.4%) for their health information, while 21.2% (63/297) used LLM-based chatbots, with ChatGPT and Microsoft Copilot being the most popular. Most participants (268/297, 90.2%) sought information on health conditions, with fewer seeking advice on medication (179/297, 60.3%), treatments (137/297, 46.1%), and self-diagnosis (62/297, 23.2%). Perceived information quality and trust varied little across source types. The preferred source for validating information from the internet was consulting health care professionals (40/132, 30.3%), while only a very small percentage of participants (5/214, 2.3%) consulted AI tools to cross-check information from search engines and health-related websites. For information obtained from LLM-based chatbots, 19.4% (12/63) of participants cross-checked the information, while 48.4% (30/63) of participants followed the advice. Both of these rates were lower than information from search engines, health-related websites, forums, or social media. Furthermore, use of LLM-based chatbots for health information was negatively correlated with age (ρ=–0.16, P=.006). In contrast, attitudes surrounding AI for medicine had significant positive correlations with the number of source types consulted for health advice (ρ=0.14, P=.01), use of LLM-based chatbots for health information (ρ=0.31, P<.001), and number of health topics searched (ρ=0.19, P<.001). Conclusions: Although traditional online sources remain dominant, LLM-based chatbots are emerging as a resource for health information for some users, specifically those who are younger and have a higher trust in AI. The perceived quality and trustworthiness of health information varied little across source types. However, the adherence to health information from LLM-based chatbots seemed more cautious compared to search engines or health-related websites. As LLMs continue to evolve, enhancing their accuracy and transparency will be essential in mitigating any potential risks by supporting responsible information-seeking while maximizing the potential of AI in health contexts. %M 40163112 %R 10.2196/68560 %U https://www.jmir.org/2025/1/e68560 %U https://doi.org/10.2196/68560 %U http://www.ncbi.nlm.nih.gov/pubmed/40163112 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e58529 %T Lung Cancer Screening in Family Members and Peers of Patients With Lung Cancer: Protocol for a Prospective Cohort Study %A Pitrou,Isabelle %A Petrangelo,Adriano %A Besson,Charlotte %A Pepe,Carmela %A Waschke,Annika Helen %A Agulnik,Jason %A Gonzalez,Anne V %A Ezer,Nicole %+ Centre for Outcomes Research and Evaluation (CORE), Research Institute McGill University Health Centre, 5252 De Maisonneuve, Montréal, QC, H4A 3S9, Canada, 1 5149341934 ext 76192, nicole.ezer@mcgill.ca %K lung cancer %K low-dose CT %K chest tomography %K lung cancer screening %K patient advocacy %K early detection of cancer %K referral and consultation %K cohort study %K patient empowerment %K patient experience %D 2025 %7 28.3.2025 %9 Protocol %J JMIR Res Protoc %G English %X Background: Low-dose computed tomography (LDCT) screening is promising for the early detection of lung cancer (LC) and the reduction of LC-related mortality. Despite the implementation of LC screening programs worldwide, recruitment is challenging. While recruitment for LC screening is based on physician referrals and mass advertising, novel recruitment strategies are needed to improve the enrollment of high-risk individuals into LC screening. Objective: We aim to identify whether patients with LC can act as advocates to enroll their family members and close contacts into LC screening and whether this strategy increases screening uptake at the population level. Methods: We designed a prospective cohort study comprising 2 cohorts constituted between June 2023 and January 2024 with a prospective follow-up of 18 months. Patients with LC (cohort 1) are approached at clinics of the McGill University Health Centre, educated on tools for communicating with family members and close contacts about the benefits of LC screening, and invited to refer their close ones. Referred individuals (cohort 2) are directed to this study’s web-based questionnaire to assess their LC risk score with the PLCOm2012 (Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial) prediction model. Individuals meeting the eligibility criteria for LC screening (PLCOm2012 score ≥2% and aged 55-74 years) are directed toward the Quebec LC screening program. Data collected include sociodemographic characteristics, health literacy and smoking status (all participants), patient activation (cohort 1), perceived risk of LC, and generalized anxiety at baseline and at 28 days (cohort 2). LDCT completion within 18 months from referral is assessed from health records. Focus groups will identify the barriers and facilitators in the uptake of LC screening and preventative behaviors based on perceived genetic and clinical LC risks. The primary outcomes are the number of referred participants per survivor of LC and the mean risk of LC of the referred population based on PLCOm2012 scores. The secondary outcomes are the proportion of (1) participants eligible for LC screening; (2) participants eligible for screening who complete LDCT screening within 18 months of referral from a survivor of LC; (3) participants showing interest in genetic testing to inform LC risk; and (4) participants showing interest in a smoking cessation program. Multivariable logistic regression will identify the predictive factors of being referred for LC screening. PLCOm2012 scores will be compared for referred participants and controls from the provincial LC screening program. Results: Overall, 25 survivors of LC and 84 close contacts were enrolled from June 2023 to January 2024, with followed up through July 2025. The results are expected by the end of 2025. Conclusions: We describe an approach to LC screening referral, leveraging patients with LC as advocates to increase screening awareness and uptake among their family and peers. Trial Registration: ClinicalTrials.gov NCT05645731; https://clinicaltrials.gov/ct2/show/NCT05645731 International Registered Report Identifier (IRRID): DERR1-10.2196/58529 %R 10.2196/58529 %U https://www.researchprotocols.org/2025/1/e58529 %U https://doi.org/10.2196/58529 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e65114 %T Changes in Health Education Literacy After Structured Web-Based Education Versus Self-Directed Online Information Seeking in Patients Undergoing Carpal Tunnel Release Surgery: Nonrandomized, Controlled Study %A Seel,Mariella %A Mihalic,Julian Alexander %A Froschauer,Stefan Mathias %A Holzner,Bernhard %A Meier,Jens %A Gotterbarm,Tobias %A Holzbauer,Matthias %K carpal tunnel release surgery %K patient education %K structured web-based education %K online information %K health education literacy %K web-based %K health education %K information seeking %K carpal tunnel release %K carpal tunnel surgery %K non-randomized %K controlled study %K self-management %K perioperative %K online health information %K health literacy %K day surgery %K online search %K carpal tunnel %K carpal %D 2025 %7 25.3.2025 %9 %J JMIR Form Res %G English %X Background: With advancements in anesthesiologic and surgical techniques, many surgeries are now performed as day-surgery procedures, requiring greater responsibilities for self-management from patients during the perioperative process. Online health information often lacks reliability and comprehensibility, posing risks for patients with low health literacy. Carpal tunnel release (CTR) surgery, a common day-surgery procedure, necessitates effective patient education for optimal recovery and self-management. Objective: This study introduces the CTS Academy, a web-based education program designed for patients undergoing CTR day surgery. The study aimed to evaluate the CTS Academy’s impact on patients’ health education literacy (HEL) compared with self-directed online information seeking. Methods: A scoping review on education programs focusing on the perioperative process of CTR was conducted before this study. In a nonrandomized controlled study, 60 patients scheduled for CTR were assigned to 2 groups based on the patients’ preferences; the test group used the CTS Academy, while the control group performed self-directed online searches. HEL was assessed using the Health Education Literacy of Patients with chronic musculoskeletal diseases (HELP) questionnaire, focusing on patients’s comprehension of medical information (COMPR), patients’s ability to apply health-related information in an everyday life (APPLY), and patient’s ability to communicate with health care professional (COMM). Secondary outcomes included content comprehensibility, patient preferences, platform usability, and clinical carpal tunnel syndrome (CTS)–related parameters. Results: In the scoping review, 17 studies could be identified and included for full-text analysis. Eighteen patients each were included in the test group (13 women and 5 men) and in the control group (11 women and 7 men). The average time spent in the study was 167 and 176 days for the test and control groups, respectively. The test group showed significant improvements in APPLY (mean 28, SD 7.99 vs mean 24, SD 5.14; P<.05) and COMM (mean 30, SD 10.52 vs mean 25, SD 6.01; P=.02) after using the CTS Academy in a longitudinal analysis. No significant changes were observed in the control group. In a comparison between groups, the test group had significantly higher APPLY scores at follow-up (mean 24, SD 5.14 vs mean 33, SD 14.78; P=.044) and fewer comprehension issues at baseline (mean 38, SD 16.60 vs mean 50, SD 19.00; P=.03). The CTS-related knowledge assessment yielded 92% (66/72) versus 90% (65/72) correct answers in the test and control groups, respectively. The test group rated the CTS Academy highly in usability (6.22 of 7.00 points) and utility (6.13 of 7.00 points). Preferences leaned toward using CTS Academy alongside doctor consultations (16/18, 89%) and over self-directed searches (15/18, 84%). No significant differences were found in CTS-related symptoms between groups. Conclusions: The CTS Academy effectively enhanced patients’ HEL, especially in applying and communicating medical information. The platform’s usability and utility were rated favorably, and patients preferred it over independent online information seeking. This suggests that structured, web-based education enhances patient self-management during the day surgery process. %R 10.2196/65114 %U https://formative.jmir.org/2025/1/e65114 %U https://doi.org/10.2196/65114 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e67361 %T Consumer Engagement With Risk Information on Prescription Drug Social Media Pages: Findings From In-Depth Interviews %A Amoozegar,Jacqueline B %A Williams,Peyton %A Giombi,Kristen C %A Richardson,Courtney %A Shenkar,Ella %A Watkins,Rebecca L %A O'Donoghue,Amie C %A Sullivan,Helen W %+ RTI International, 3040 East Cornwallis Road, Research Triangle Park, NC, 27709-2194, United States, 1 919 541 6000, jamoozegar@rti.org %K social media %K prescription drugs %K risk information %K safety information %K Facebook %K Instagram %K prescription %K risk %K information %K safety %K interview %K consumer engagement %K digital %K drug promotion %K user experience %K promotion %D 2025 %7 25.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: The volume of digital drug promotion has grown over time, and social media has become a source of information about prescription drugs for many consumers. Pharmaceutical companies currently present risk information about prescription drugs they promote in a variety of ways within and across social media platforms. There is scarce research on consumers’ interactions with prescription drug promotion on social media, particularly on which features may facilitate or inhibit consumers’ ability to find, review, and comprehend drug information. This is concerning because it is critical for consumers to know and weigh drug benefits and risks to be able to make informed decisions regarding medical treatment. Objective: We aimed to develop an understanding of the user interface (UI) and user experience (UX) of social media pages and posts created by pharmaceutical companies to promote drugs and how UI or UX design features impact consumers’ interactions with drug information. Methods: We conducted in-person interviews with 54 consumers segmented into groups by device type (laptop or mobile phone), social media platform (Facebook or Instagram), and age. Interviewers asked participants to navigate to and review a series of 4 pages and 3 posts on their assigned device and platform. Interviewers encouraged participants to “think aloud,” as they interacted with the stimuli during a brief observation period. Following each observation period, participants were asked probing questions. An analyst reviewed video recordings of the observation periods to abstract quantitative interaction data on whether a participant clicked on or viewed risk information at each location it appeared on each page. Participants’ responses were organized in a metamatrix, which we used to conduct thematic analysis. Results: Observational data revealed that 59% of participants using Facebook and 70% of participants using Instagram viewed risk information in at least 1 possible location on average across all pages tested during the observation period. There was not a single location across the Facebook pages that participants commonly clicked on to view risk information. However, a video with scrolling risk information attracted more views than other features. On Instagram, at least half of the participants consistently clicked on the highlighted story with risk information across the pages. Although thematic analysis showed that most participants were able to identify the official pages and risk information for each drug, auto-scrolling text and text size posed barriers to identification and comprehensive review for some participants. Participants generally found it more difficult to identify the drugs’ indications than risks. Participants using Instagram more frequently reported challenges identifying risks and indications compared to those using Facebook. Conclusions: UI or UX design features can facilitate or pose barriers to users’ identification, review, and comprehension of the risk information provided on prescription drugs’ social media pages and posts. %M 40132186 %R 10.2196/67361 %U https://www.jmir.org/2025/1/e67361 %U https://doi.org/10.2196/67361 %U http://www.ncbi.nlm.nih.gov/pubmed/40132186 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e60647 %T Exploring Laypersons’ Experiences With a Mobile Symptom Checker App as an Interface Between eHealth Literacy, Health Literacy, and Health-Related Behavior: Qualitative Interview Study %A Koch,Roland %A Steffen,Marie-Theres %A Wetzel,Anna-Jasmin %A Preiser,Christine %A Klemmt,Malte %A Ehni,Hans-Jörg %A Mueller,Regina %A Joos,Stefanie %+ Institute for General Practice and Interprofessional Care, Tübingen University Hospital, Tübingen, Germany, 49 1758065961, roland.koch@med.uni-tuebingen.de %K symptom checker apps %K health literacy %K eHealth literacy %K qualitative research %K interview study %K artificial intelligence %K AI %D 2025 %7 21.3.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Symptom checkers aim to help users recognize medical symptoms and recommend actions. However, they are not yet reliable for self-triage or diagnostics. Health literacy plays a role in their use, but the process from symptom recognition to health care consultation remains unclear. Objective: This qualitative observatory study explored how laypersons use symptom checkers, focusing on the process of use, entry points and outcomes, and the role of health literacy. Laypersons are defined as individuals who are neither medical professionals nor developers of such apps. Three research questions were addressed: (1) How do such users describe the process of using symptom checkers? (2) What are entry points and possible outcomes of symptom checker app use? (3) How are health literacy and eHealth literacy expressed during the use of symptom checker apps? Methods: As part of the Ethical, Legal, and Social Implications of Symptom Checker Apps in Primary Health Care project, 15 laypersons (n=9, 60% female and n=6, 40% male; mean age 30.7, SD 13.6 years) were interviewed about their experiences with the symptom checker Ada. The interviews were analyzed using an integrative approach combining social positioning, agency, and the Rubicon model as a heuristic framework. Results: App use follows a cyclic process comprising 4 steps: motivation (influenced by biography and context), intention formation (assigning a purpose), intention implementation (recruiting resources), and evaluation (transforming interactions into health-related insights). Biographical, social, and contextual factors shape process initiation. Users use symptom checkers for 3 main purposes: understanding their condition, receiving recommendations for action, and documenting or communicating health-related information. Each purpose requires specific planning and integration into health-related behaviors drawing on personal, social, and technological resources. Evaluation depends on contextual factors, app outputs, and the outcomes of users’ health-related actions. Users assess whether the app aligns with their expectations, condition severity, and previous experiences, with health literacy playing a critical role in validation processes. Conclusions: Symptom checker use is a complex, cyclic process shaped by context, biography, and health literacy. Users are motivated by health concerns influenced by personal, social, and contextual factors, with trust and attitudes impacting initial engagement. Intention formation reflects a balance between user skills and context, where app outputs inform decisions but may not always lead to action, especially in ambiguous situations. Users rely on personal resources and social networks to integrate app use into health-related behaviors, highlighting the limitations of symptom checkers in providing social or empathetic support. Symptom checkers have the potential to serve as an interface between users and health care, but future development must address the complexity of their use to unlock this potential. International Registered Report Identifier (IRRID): RR2-10.2196/34026 %M 40117573 %R 10.2196/60647 %U https://formative.jmir.org/2025/1/e60647 %U https://doi.org/10.2196/60647 %U http://www.ncbi.nlm.nih.gov/pubmed/40117573 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e64186 %T Developing and Implementing Provider-Training and Evidence-Based Tools to Support Pre-exposure Prophylaxis (PrEP) Decision-Making and Increase PrEP Adherence Among Young Men Who Have Sex With Men: Protocol for the PrEP Choice Longitudinal Cohort Study %A Rainer,Crissi %A Schnall,Rebecca %A Tanner,Mary R %A Galindo,Carla A %A Hoover,Karen W %A Naar,Sylvie %A Brin,Maeve %A Martinez,Andres %A Jia,Haomiao %A Mendoza,Maria %A Hightow-Weidman,Lisa %+ Institute on Digital Health and Innovation, College of Nursing, Florida State University, 98 Varsity Way, Tallahassee, FL, 32306, United States, 1 8506445260, crainer@fsu.edu %K pre-exposure prophylaxis %K PrEP %K PrEP cohort %K young men who have sex with men %K YMSM %K digital health %K evidence-based tools %K motivational interviewing %D 2025 %7 20.3.2025 %9 Protocol %J JMIR Res Protoc %G English %X Background: Despite the availability of highly effective HIV pre-exposure prophylaxis (PrEP), uptake and adherence to PrEP among young men who have sex with men (YMSM) remains low, limiting its impact on the prevention of HIV infection. Strategies that incorporate an array of prevention options and provide YMSM and their providers with tailored education and support tools, including tools to support shared decision-making, are needed. Objective: The goals of the Centers for Disease Control and Prevention (CDC)–funded PrEP Choice study include the development and deployment of CDC guideline–consistent PrEP provider training and the implementation of evidence-based provider- and client-facing PrEP education and support tools. Under this initiative, the CDC funded 2 research projects, Florida State University (the Expanding PrEP in Communities of Color [EPICC] project), and Columbia University (the mChoice project). Methods: Providers from both projects will complete the PrEP Choice online training, which was developed to educate providers on PrEP options and how to engage clients in open discussions around sexual health and PrEP options. EPICC project providers will also attend online tailored motivational interviewing (TMI) training sessions, and mChoice project providers will view a training video on cultural competency and humility in PrEP care. Following training, each project will enroll a cohort of 400 participants receiving care from study providers and follow them for 12-18 months. Participants will complete online surveys every 3 months and provide biomarkers to assess PrEP adherence. Electronic health record (EHR) data will be collected every 6 months to provide additional information on clinic attendance, PrEP prescriptions, and HIV/sexually transmitted infection (STI) testing. Each project will provide cohort participants with a unique digital health tool to support the PrEP choice and ongoing adherence. The study will assess the effectiveness of training and educational and support tools in practice and the critical factors associated with the successful uptake of and adherence to PrEP by participants. The study will also monitor patterns of PrEP use among YMSM, including types of PrEP and switching between types. Results: Formative work to develop and prepare the tools for implementation was completed in 2023. The EPICC project began provider training in early 2024, and the mChoice project began in spring 2024. Cohort enrollment for both projects began after provider training began. Conclusions: Given the changing PrEP landscape, implementation of provider education and tools to maximize uptake and adherence is needed. By delivering culturally competent and interactive provider training on PrEP options, the study will help providers counsel and guide participants on the effective and safe use of PrEP. The digital health tools created will support participant adherence to help them optimize PrEP benefits. Through the cohort design, the PrEP Choice study will provide real-world data about PrEP use that will be critical for informing future guidelines and tools. International Registered Report Identifier (IRRID): DERR1-10.2196/64186 %M 40112293 %R 10.2196/64186 %U https://www.researchprotocols.org/2025/1/e64186 %U https://doi.org/10.2196/64186 %U http://www.ncbi.nlm.nih.gov/pubmed/40112293 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e60588 %T Patient and Provider Perspectives of a Web-Based Intervention to Support Symptom Management After Radioactive Iodine Treatment for Differentiated Thyroid Cancer: Qualitative Study %A Carr,Alaina L %A Jenkins,Angela M %A Jonklaas,Jacqueline %A Gabriel,Kate %A Miller,Kristen E %A Graves,Kristi D %K iodine radioisotopes %K person-based approach %K self-management %K Social Cognitive Theory %K survivorship %K symptom burden %K thyroid neoplasms %K web-based intervention %K radioactive iodine treatment %K radiotherapy %K thyroid cancer %K qualitative %K quality of life %K survivorship care %K supportive care %K patient with cancer %K QoL %K cancer %K carcinoma %K malignancy %K tumor %K malignant %K oncology %K neoplasm %K benign %K neoplasia %K thyroid %D 2025 %7 19.3.2025 %9 %J JMIR Form Res %G English %X Background: Patients diagnosed with differentiated thyroid cancer (DTC) who receive radioactive iodine (RAI) treatment experience acute, medium, and late treatment effects. The timing and severity of these effects vary by individual; common posttreatment effects include dry mouth, salivary gland swelling, dry eyes, and nose bleeds. The nature of symptoms that patients experience after RAI treatment can significantly and negatively impact health-related quality of life. Adequate information during the postprimary treatment phase remains an unmet need among the population of patients diagnosed with DTC. Objective: This qualitative study aimed to identify and understand self-management strategies for RAI-specific symptom burden from the perspectives of patients and stakeholders (cancer care providers and patient advocates). An additional aim included assessing features and functionalities desirable in the development of a web-based intervention to engage patients in their self-management and thyroid cancer survivorship care. Methods: Following the Social Cognitive Theory framework and person-based principles, we conducted six focus groups with 22 patients diagnosed with DTC who completed RAI treatment and individual interviews with 12 stakeholders in DTC care. The interviews focused on participants’ perspectives on current self-management strategies and mockups of a symptom management web-based intervention. Before focus groups and interviews, participants completed a demographics survey. Focus group discussions and interviews were transcribed and coded using content analysis. Interrater reliability was satisfactory (ɑ=.88). Results: A total of 34 individuals (patients and stakeholders) participated in the study; the mean age was 45 (SD 13.4) and 45.3 (SD 13) years, respectively. Three domains emerged from qualitative interviews: (1) difficult-to-manage RAI symptoms: short, medium, and late treatment effects; (2) key intervention structure and content feedback on mockups; and (3) intervention content to promote RAI symptom management and survivorship care. Focus group participants identified the most prevalent RAI symptoms that were difficult to manage as: dry mouth (11/22, 50%), salivary gland swelling (8/22, 36%), and changes in taste (12/22, 55%). Feedback elicited from both groups found education and symptom management mockup videos to be helpful in patient self-management of RAI symptoms, whereas patients and stakeholders provided mixed feedback on the benefits of a draft frequently asked questions page. Across focus groups and stakeholder interviews, nutrition-based symptom management strategies, communication with family members, and practical survivorship follow-up information emerged as helpful content to include in a future web-based supportive care intervention. Conclusions: Results suggest education and symptom management videos can empower patients with DTC to self-manage mild to moderate RAI symptoms on a web-based platform. Findings emphasized the need for additional information for patients related to ongoing care following RAI treatment including social support and thyroid cancer surveillance. The findings provide insights for theoretically informed interventions and recommendations for refinements in thyroid cancer survivorship from patient and provider perspectives. %R 10.2196/60588 %U https://formative.jmir.org/2025/1/e60588 %U https://doi.org/10.2196/60588 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e63347 %T Using ChatGPT to Improve the Presentation of Plain Language Summaries of Cochrane Systematic Reviews About Oncology Interventions: Cross-Sectional Study %A Šuto Pavičić,Jelena %A Marušić,Ana %A Buljan,Ivan %K health literacy %K patient education %K health communication %K ChatGPT %K neoplasms %K Cochrane %K oncology %K plain language %K medical information %K decision-making %K large language model %K artificial intelligence %K AI %D 2025 %7 19.3.2025 %9 %J JMIR Cancer %G English %X Background: Plain language summaries (PLSs) of Cochrane systematic reviews are a simple format for presenting medical information to the lay public. This is particularly important in oncology, where patients have a more active role in decision-making. However, current PLS formats often exceed the readability requirements for the general population. There is still a lack of cost-effective and more automated solutions to this problem. Objective: This study assessed whether a large language model (eg, ChatGPT) can improve the readability and linguistic characteristics of Cochrane PLSs about oncology interventions, without changing evidence synthesis conclusions. Methods: The dataset included 275 scientific abstracts and corresponding PLSs of Cochrane systematic reviews about oncology interventions. ChatGPT-4 was tasked to make each scientific abstract into a PLS using 3 prompts as follows: (1) rewrite this scientific abstract into a PLS to achieve a Simple Measure of Gobbledygook (SMOG) index of 6, (2) rewrite the PLS from prompt 1 so it is more emotional, and (3) rewrite this scientific abstract so it is easier to read and more appropriate for the lay audience. ChatGPT-generated PLSs were analyzed for word count, level of readability (SMOG index), and linguistic characteristics using Linguistic Inquiry and Word Count (LIWC) software and compared with the original PLSs. Two independent assessors reviewed the conclusiveness categories of ChatGPT-generated PLSs and compared them with original abstracts to evaluate consistency. The conclusion of each abstract about the efficacy and safety of the intervention was categorized as conclusive (positive/negative/equal), inconclusive, or unclear. Group comparisons were conducted using the Friedman nonparametric test. Results: ChatGPT-generated PLSs using the first prompt (SMOG index 6) were the shortest and easiest to read, with a median SMOG score of 8.2 (95% CI 8‐8.4), compared with the original PLSs (median SMOG score 13.1, 95% CI 12.9‐13.4). These PLSs had a median word count of 240 (95% CI 232‐248) compared with the original PLSs’ median word count of 364 (95% CI 339‐388). The second prompt (emotional tone) generated PLSs with a median SMOG score of 11.4 (95% CI 11.1‐12), again lower than the original PLSs. PLSs produced with the third prompt (write simpler and easier) had a median SMOG score of 8.7 (95% CI 8.4‐8.8). ChatGPT-generated PLSs across all prompts demonstrated reduced analytical tone and increased authenticity, clout, and emotional tone compared with the original PLSs. Importantly, the conclusiveness categorization of the original abstracts was unchanged in the ChatGPT-generated PLSs. Conclusions: ChatGPT can be a valuable tool in simplifying PLSs as medically related formats for lay audiences. More research is needed, including oversight mechanisms to ensure that the information is accurate, reliable, and culturally relevant for different audiences. %R 10.2196/63347 %U https://cancer.jmir.org/2025/1/e63347 %U https://doi.org/10.2196/63347 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e58855 %T The Reliability and Quality of Videos as Guidance for Gastrointestinal Endoscopy: Cross-Sectional Study %A Liu,Jinpei %A Qiu,Yifan %A Liu,Yilong %A Xu,Wenping %A Ning,Weichen %A Shi,Peimei %A Yuan,Zongli %A Wang,Fang %A Shi,Yihai %+ Department of Gastroenterology, Gongli Hospital of Shanghai Pudong New Area, Pudong New Area 219 Miaopu Road, Shanghai, 200135, China, 86 5885873, syh01206@163.com %K gastrointestinal endoscopy %K YouTube %K patient education %K social media gastrointestinal %K large language model %K LLM %K reliability %K quality %K video %K cross-sectional study %K endoscopy-related videos %K health information %K endoscopy %K gastroscopy %K colonoscopy %D 2025 %7 11.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Gastrointestinal endoscopy represents a useful tool for the diagnosis and treatment of gastrointestinal diseases. Video platforms for spreading endoscopy-related knowledge may help patients understand the pros and cons of endoscopy on the premise of ensuring accuracy. However, videos with misinformation may lead to adverse consequences. Objective: This study aims to evaluate the quality of gastrointestinal endoscopy-related videos on YouTube and to assess whether large language models (LLMs) can help patients obtain information from videos more efficiently. Methods: We collected information from YouTube videos about 3 commonly used gastrointestinal endoscopes (gastroscopy, colonoscopy, and capsule endoscopy) and assessed their quality (rated by the modified DISCERN Tool, mDISCERN), reliability (rated by the Journal of the American Medical Association), and recommendation (rated by the Global Quality Score). We tasked LLM with summarizing the video content and assessed it from 3 perspectives: accuracy, completeness, and readability. Results: A total of 167 videos were included. According to the indicated scoring, the quality, reliability, and recommendation of the 3 gastrointestinal endoscopy-related videos on YouTube were overall unsatisfactory, and the quality of the videos released by patients was particularly poor. Capsule endoscopy yielded a significantly lower Global Quality Score than did gastroscopy and colonoscopy. LLM-based summaries yielded accuracy scores of 4 (IQR 4-5), completeness scores of 4 (IQR 4-5), and readability scores of 2 (IQR 1-2). Conclusions: The quality of gastrointestinal endoscope-related videos currently on YouTube is poor. Moreover, additional regulatory and improvement strategies are needed in the future. LLM may be helpful in generalizing video-related information, but there is still room for improvement in its ability. %M 40068165 %R 10.2196/58855 %U https://www.jmir.org/2025/1/e58855 %U https://doi.org/10.2196/58855 %U http://www.ncbi.nlm.nih.gov/pubmed/40068165 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e58882 %T Living With and Managing Uncomplicated Urinary Tract Infection: Mixed Methods Analysis of Patient Insights From Social Media %A Kramer,Melissa L %A Polo,Jose Medina %A Kumar,Nishant %A Mulgirigama,Aruni %A Benkiran,Amina %+ Live UTI Free Ltd, Suite 7, The Courtyard, Carmanhall Road, Sandyford, Dublin, D18 NW62, Ireland, 386 64 157 997, melissa@liveutifree.com %K acute cystitis %K bladder infection %K HCP interactions %K urology %K patient experience %K patient insights %K social media %K uncomplicated urinary tract infection %K urinary tract infection %K urinary %K women %K quality of life %K disease management %K cystitis %K healthcare professional %K self-management %K patient behavior %K UTI %D 2025 %7 11.3.2025 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 40067345 %R 10.2196/58882 %U https://www.jmir.org/2025/1/e58882 %U https://doi.org/10.2196/58882 %U http://www.ncbi.nlm.nih.gov/pubmed/40067345 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e57881 %T “Your Life, Your Health: Tips and Information for Health and Well-Being”: Development of a World Health Organization Digital Resource to Support Universal Access to Trustworthy Health Information %A Muscat,Danielle M %A Hinton,Rachael %A Kuruvilla,Shyama %A Nutbeam,Don %K health communication %K health literacy %K consumer health information %K digital health %K universal health care %D 2025 %7 6.3.2025 %9 %J JMIR Form Res %G English %X Background: Access to trustworthy, understandable, and actionable health information is a key determinant of health and is an essential component of universal health coverage and primary health care. The World Health Organization has developed a new digital resource for the general public to improve health and well-being across different life phases and to support people in caring for themselves, their families, and their communities. The goal was to make trustworthy health information accessible, understandable, and actionable for the general public in a digital format and at the global scale. Objective: The aim of this paper was to describe the multistage approach and methodology used to develop the resource Your life, your health: Tips and information for health and well-being (hereafter, Your life, your health). Methods: A 5-step process was used to develop Your life, your health, including (1) reviewing and synthesizing existing World Health Organization technical guidance, member state health and health literacy plans, and international human rights frameworks to identify priority messages; (2) developing messages and graphics that are accessible, understandable, and actionable for the public using health literacy principles; (3) engaging with experts and stakeholders to refine messages and message delivery; (4) presenting priority content in an accessible digital format; and (5) adapting the resource based on feedback and new evidences. Results: The Your life, your health online resource adopts a life-course approach to organize health information based on priority actions and rights that support peoples’ health and well-being across different life stages and specific health topics. The resource promotes health literacy by offering advice on asking questions to health workers, making informed decisions about personal and family health, and effectively using digital media to obtain reliable health information. Additionally, it reflects the ambitions of the Sustainable Development Goals by providing essential information on the social determinants of health and clarifies the distinct roles of individuals, frontline workers, governments, and the media in promoting and protecting health. Conclusions: Making health information available—including to the public—is an essential step in strengthening the global health information system. The development process for the Your life, your health online resource outlined in this article offers a structured approach to translate technical health guidelines into accessible, understandable, and actionable health information for the general public. %R 10.2196/57881 %U https://formative.jmir.org/2025/1/e57881 %U https://doi.org/10.2196/57881 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 12 %N %P e66634 %T Identifying Strategies for Home Management of Ostomy Care: Content Analysis of YouTube %A Haughey,Marketa %A Neyens,David M %A Hopkins,Casey S %A Gonzaga,Christofer %A Harman,Melinda %+ Department of Bioengineering, Clemson University, 301 Rhodes Engineering Research Center, Clemson, SC, 29634, United States, 1 8646564140, harman2@clemson.edu %K medical device usability %K digital health %K online support groups %K living with chronic medical conditions %K ostomy self-care %K YouTube %K patient education %K user needs assessment %K users experience %K social media %K ostomates %K colostomy %K ileostomy %K usability %K usefulness %K utility %K wearable device %K medical device %K support group %K socials %K social network %K ostomy %K digital %K digital technology %K digital intervention %D 2025 %7 6.3.2025 %9 Original Paper %J JMIR Hum Factors %G English %X Background: The social media platform YouTube is a recognized educational resource for health information, but few studies have explored its value for conveying the lived experience of individuals managing chronic health conditions and end users’ interactions with medical device technology. Our study explores self-care strategies and end user needs of people living with a stoma because patient education and engagement in ostomy self-care are essential for avoiding ostomy-related complications. Ostomy surgery creates a stoma (an opening) in the abdomen to alter the route of excreta from digestive and urinary organs into a detachable external pouching system. After hospital discharge, people who have undergone ostomies perform critical self-care tasks including frequent ostomy appliance changes and stomal and peristomal skin maintenance. Objective: The purpose of this study was to systematically assess YouTube videos narrated by people who have undergone ostomies about their ostomy self-care in home (nonhospital) settings with a focus on identifying end user needs and different strategies used by people who have undergone ostomies during critical self-care tasks. Methods: Using predefined search terms and clear inclusion and exclusion criteria, we identified YouTube videos depicting narrators who have undergone ostomies and their ostomy self-care in home settings. Using a consensus coding approach among 3 independent reviewers, all videos were analyzed to collect metadata, data of narrators who have undergone ostomies, and specific content data. Results: There were 65 user-generated YouTube videos that met the inclusion and exclusion criteria. These videos were posted by 28 unique content creators representing a broad range of ages who used a variety of supplies. The common challenges discussed were peristomal skin complications, inadequate appliance adhesion and subsequent leakage, and supplies-related challenges. Narrators who have undergone ostomies discussed various expert tricks and tips to successfully combat these challenges. Conclusions: This study used a novel approach to gain insights about end user interactions with medical devices while performing ostomy self-care, which are difficult to gain using traditional behavioral techniques. The analysis revealed that people who have undergone ostomies are willing to share their personal experience with ostomy self-care on the web and that these videos are viewed by the public. User-generated videos demonstrated a variety of supplies used, end user needs, and different strategies for performing ostomy self-care. Future research should examine how these findings connect to YouTube ostomy self-care content generated by health care professionals and organizations and to guidelines for ostomy self-care. %M 40053741 %R 10.2196/66634 %U https://humanfactors.jmir.org/2025/1/e66634 %U https://doi.org/10.2196/66634 %U http://www.ncbi.nlm.nih.gov/pubmed/40053741 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e64724 %T Social Media as a Platform for Cancer Care Decision-Making Among Women: Internet Survey-Based Study on Trust, Engagement, and Preferences %A Johnson,Anna Rose %A Longfellow,Grace Anne %A Lee,Clara N %A Ormseth,Benjamin %A Skolnick,Gary B %A Politi,Mary C %A Rivera,Yonaira M %A Myckatyn,Terence %+ Division of Plastic and Reconstructive Surgery, Department of Surgery, Washington University School of Medicine, 1020 N. Mason Rd, Ste 110, Saint Louis, MO, 63141, United States, 1 3149968800, myckatyn@wustl.edu %K shared decision-making %K SDM %K decision aids %K cancer treatment %K breast cancer %K digital health %K social media %K health communication %K online decision aids %K health information-seeking behavior %K trust in health information %K healthcare accessibility %K mhealth %D 2025 %7 5.3.2025 %9 Original Paper %J JMIR Cancer %G English %X Background: Decision aids improve patient and clinician decision-making but are underused and often restricted to clinical settings. Objective: Given limited studies analyzing the feasibility of disseminating decision aids through social media, this study aimed to evaluate the acceptability, trust, and engagement of women with social media as a tool to deliver online decision aids for cancer treatment. Methods: To prepare for potential dissemination of a breast cancer decision aid via social media, a cross-sectional survey in February 2023 was conducted via Prime Panels, an online market research platform, of women aged 35-75 years in the United States. Demographics, health, cancer information-seeking behaviors, social media use, trust in social media for health information, as well as the likelihood of viewing cancer-related health information and clicking on decision aids through social media, were assessed. Statistical analyses included descriptive statistics, correlations, and multivariable ordinal regression. Results: Of 607 respondents, 397 (65.4%) had searched for cancer information, with 185 (46.6%) using the internet as their primary source. Facebook (Meta) was the most popular platform (511/607, 84.2%). Trust in social media for health information was higher among Black (14/72, 19.4%) and Asian respondents (7/27, 25.9%) than among White respondents (49/480, 10.2%; P=.003). Younger respondents aged 35-39 years (17/82, 20.7%) showed higher trust than those aged 70-79 years (12/70, 17.1%; P<.001). Trust in social media for health information was linked to a higher likelihood of viewing cancer information and accessing a decision aid online (P<.001). Participants who rated social media as “Trustworthy” (n=73) were more likely to view cancer information (61/73, 83.6%) and click on decision aids (61/73, 83.6%) than those who found it “Untrustworthy” (n=277; view: 133/277, 48.0%; click: 125/277, 45.1%). Engagement with social media positively correlated with viewing online cancer information (Spearman ρ=0.20, P<.001) and willingness to use decision aids (ρ=0.21, P<.001). Multivariable ordinal regression analyses confirmed that perception of social media’s trustworthiness is a significant predictor of engagement with decision aids (untrustworthy vs trustworthy β=–1.826, P<.001; neutral vs trustworthy β=–0.926, P=.007) and of viewing cancer information (untrustworthy vs trustworthy β=–1.680, P<.001, neutral vs trustworthy β=–0.581, P=.098), while age and employment status were not significant predictors. Conclusions: This exploratory study suggests that social media platforms may increase access to health information and decision aids. No significant differences were observed between demographic variables and the use or trust in social media for health information. However, trust in social media emerged as a mediating factor between demographics and engagement with cancer information online. Before disseminating decision aids on social media, groups should identify existing trust and engagement patterns with different platforms within their target demographic. %M 40053770 %R 10.2196/64724 %U https://cancer.jmir.org/2025/1/e64724 %U https://doi.org/10.2196/64724 %U http://www.ncbi.nlm.nih.gov/pubmed/40053770 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e55341 %T Enhancing Doctor-Patient Shared Decision-Making: Design of a Novel Collaborative Decision Description Language %A Guo,XiaoRui %A Xiao,Liang %A Liu,Xinyu %A Chen,Jianxia %A Tong,Zefang %A Liu,Ziji %+ School of Computer Science, Hubei University of Technology, 28 Nanli Road, Hongshan District, Hubei Province, Wuhan, 430068, China, 86 18062500600, lx@mail.hbut.edu.cn %K shared decision-making %K speech acts %K agent %K argumentation %K interaction protocol %D 2025 %7 4.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Effective shared decision-making between patients and physicians is crucial for enhancing health care quality and reducing medical errors. The literature shows that the absence of effective methods to facilitate shared decision-making can result in poor patient engagement and unfavorable decision outcomes. Objective: In this paper, we propose a Collaborative Decision Description Language (CoDeL) to model shared decision-making between patients and physicians, offering a theoretical foundation for studying various shared decision scenarios. Methods: CoDeL is based on an extension of the interaction protocol language of Lightweight Social Calculus. The language utilizes speech acts to represent the attitudes of shared decision-makers toward decision propositions, as well as their semantic relationships within dialogues. It supports interactive argumentation among decision makers by embedding clinical evidence into each segment of decision protocols. Furthermore, CoDeL enables personalized decision-making, allowing for the demonstration of characteristics such as persistence, critical thinking, and openness. Results: The feasibility of the approach is demonstrated through a case study of shared decision-making in the disease domain of atrial fibrillation. Our experimental results show that integrating the proposed language with GPT can further enhance its capabilities in interactive decision-making, improving interpretability. Conclusions: The proposed novel CoDeL can enhance doctor-patient shared decision-making in a rational, personalized, and interpretable manner. %M 40053763 %R 10.2196/55341 %U https://www.jmir.org/2025/1/e55341 %U https://doi.org/10.2196/55341 %U http://www.ncbi.nlm.nih.gov/pubmed/40053763 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 8 %N %P e49507 %T Implementation of a Web-Based Program for Advance Care Planning and Evaluation of its Complexity With the Nonadoption, Abandonment, Scale-Up, Spread, And Sustainability (NASSS) Framework: Qualitative Evaluation Study %A van der Smissen,Doris %A Schreijer,Maud A %A van Gemert-Pijnen,Lisette J E W C %A Verdaasdonk,Rudolf M %A van der Heide,Agnes %A Korfage,Ida J %A Rietjens,Judith A C %+ Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands, 31 107038460, i.korfage@erasmusmc.nl %K eHealth %K web-based intervention %K implementation %K sustainability %K advance care planning %K NASSS framework %K nonadoption, abandonment, scale-up, spread, and sustainability framework %K health communication %K patient education %K patient-centered care %D 2025 %7 4.3.2025 %9 Original Paper %J JMIR Aging %G English %X Background: The implementation of eHealth applications often fails. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework aims to identify complexities in eHealth applications; the more complex, the more risk of implementation failure. Objective: This study aimed to analyze the implementation of the web-based advance care planning (ACP) program “Explore Your Preferences for Treatment and Care” using the NASSS framework. Methods: The NASSS framework enables a systematic approach to improve the implementation of eHealth tools. It is aimed at generating a rich and situated analysis of complexities in multiple domains, based on thematic analysis of existing and newly collected data. It also aims at supporting individuals and organizations to handle these complexities. We used 6 of 7 domains of the NASSS framework (ie, condition, technology, value proposition, adopters, external context, and embedding and adaptation over time) leaving out “organization,” and analyzed the multimodal dataset of a web-based ACP program, its development and evaluation, including peer-reviewed publications, notes of stakeholder group meetings, and interviews with stakeholders. Results: This study showed that the web-based ACP program uses straightforward technology, is embedded in a well-established web-based health platform, and in general appears to generate a positive value for stakeholders. A complexity is the rather broad target population of the program. A potential complexity considers the limited insight into the extent to which health care professionals adopt the program. Awareness of the relevance of the web-based ACP program may still be improved among target populations of ACP and among health care professionals. Furthermore, the program may especially appeal to those who value individual autonomy, self-management, and an explicit and direct communicative approach. Conclusions: Relatively few complexities were identified considering the implementation of the web-based ACP program “Explore Your Preferences for Treatment and Care.” The program is evidence-based, freestanding, and well-maintained, with straightforward, well-understood technology. The program is expected to generate a positive value for different stakeholders. Complexities include the broad target population of the program and sociocultural factors. People with limited digital literacy may need support to use the program. Its uptake might be improved by increasing awareness of ACP and the program among a wider population of potential users and among health care professionals. Addressing these issues may guide future use and sustainability of the program. %M 40053753 %R 10.2196/49507 %U https://aging.jmir.org/2025/1/e49507 %U https://doi.org/10.2196/49507 %U http://www.ncbi.nlm.nih.gov/pubmed/40053753 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e63763 %T Evaluating the Knowledge and Information-Seeking Behaviors of People Living With Multiple Sclerosis: Cross-Sectional Questionnaire Study %A Duguay,Véronique %A Comeau,Dominique %A Turgeon,Tiffany %A Bouhamdani,Nadia %A Belanger,Mathieu %A Weston,Lyle %A Johnson,Tammy %A Manzer,Nicole %A Giberson,Melissa %A Chamard-Witkowski,Ludivine %+ , Centre de Formation Médicale du Nouveau-Brunswick, Université de Sherbrooke, 50 De la Francophonie Street, Moncton, NB, E1A 7R1, Canada, 1 5062261627, veronique.duguay2@usherbrooke.ca %K multiple sclerosis %K chronic illness %K misinformation %K web-based searches %K education %K health information %K social media %K health literacy %K patient-doctor relationship %K health-related information %K information-seeking behavior %D 2025 %7 25.2.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: The internet has emerged as a primary source of health-related information for people living with multiple sclerosis (MS). However, given the abundance of misinformation found on the web, this behavior may pose a significant threat to internet users. Objective: This study aims to explore the knowledge and information-seeking behavior of people living with MS followed at a specialized MS clinic where education is a cornerstone of care. Methods: This cross-sectional survey–based study comprised 20 true or false statements, covering both scientific facts and popular misinformation about MS treatments. A “scientific fact score” and a “misinformation score” were calculated by attributing a scoring system to each point in the survey: +1 point was attributed to correct answers, –1 point was attributed to incorrect answers, and 0 point was attributed to “I don’t know.” Furthermore, the survey inquired about participants’ health-seeking behaviors. Results: The mean age of the 69 participants was 48.4 (SD 10.9) years, 78% (54/69) were female, 81% (56/69) were highly educated, 90% (62/69) were receiving a disease-modifying therapy, and 52% (30/58) had experimented with alternative therapies. The mean score for answering the scientific and misinformation questions correctly was 69% (SD 2.4%) and 22% (SD 4.5%), respectively (P<.001). Notably, when questioned about misinformation, answering correctly dropped significantly (P<.001), while indecision (P<.001) and answering incorrectly (P=.02) increased. Sociodemographic factors and medical questions were not significantly associated with scientific and misinformation scores (all P>.05); however, misinformation scores did significantly correlate with levels of education (P=.04). The main sources of health-related information were from expert-led MS websites (48/58, 82%) and health care professionals (34/58, 59%). Low-reliability sources were less used; however, word of mouth seemed to be prevalent (14/58, 24%), followed by Facebook (10/58, 17%). On average, people with MS reported having consulted 3 high- to moderate-quality sources and only 1 low-quality source. Conclusions: Education at the clinic and consulting primarily moderate- to high-quality sources did not safeguard against misinformation, indicating a need for more misinformation-geared education at the clinic. Notably, there is a need to proactively educate patients about misinformation commonly found on the web, and more importantly, create space for them to discuss the information without prejudice. As novel educational methods may be relatively more time-consuming, implementing change may be challenging. Furthermore, age, sex, education level, and health literacy might not safeguard against misinformation. Herein, we were unable to identify correlations associated with scores obtained on the questionnaire other than educational level. Although the educational level did seem to impact the misinformation score, this did not stop participants from experimenting with alternative therapies. Although studies are exploring novel ways to effectively deal with health misinformation on the web, more research is needed to fully understand this highly complex social phenomenon. %M 39998866 %R 10.2196/63763 %U https://www.jmir.org/2025/1/e63763 %U https://doi.org/10.2196/63763 %U http://www.ncbi.nlm.nih.gov/pubmed/39998866 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e59956 %T Shared Decision-Making Tools Implemented in the Electronic Health Record: Scoping Review %A Pierce,Joni H %A Weir,Charlene %A Taft,Teresa %A Richards II,William %A McFarland,Mary M %A Kawamoto,Kensaku %A Del Fiol,Guilherme %A Butler,Jorie M %+ Department of Biomedical Informatics, Spencer Fox Eccles School of Medicine, University of Utah, 421 Wakara Way, Suite 140, Salt Lake City, UT, 84108, United States, 1 801 588 9395, jonipierce@comcast.net %K shared decision-making %K patient engagement %K decision support %K electronic health records %D 2025 %7 21.2.2025 %9 Review %J J Med Internet Res %G English %X Background: Patient-centered care promotes the involvement of patients in decision-making related to their health care. The adoption and implementation of shared decision-making (SDM) into routine care are constrained by several obstacles, including technical and time constraints, clinician and patient attitudes and perceptions, and processes that exist outside the standardized clinical workflow. Objective: We aimed to understand the integration and implementation characteristics of reported SDM interventions integrated into an electronic health record (EHR) system. Methods: We conducted a scoping review using the methodological framework by Arksey and O’Malley with guidance from the Joanna Briggs Institute. Eligibility criteria included original research and reviews focusing on SDM situations in a real-world clinical setting and EHR integration of SDM tools and processes. We excluded retrospective studies, conference abstracts, simulation studies, user design studies, opinion pieces, and editorials. To identify eligible studies, we searched the following databases on January 11, 2021: MEDLINE, Embase, CINAHL Complete, Cochrane Library including CENTRAL, PsycINFO, Scopus, and Web of Science Core Collection. We systematically categorized descriptive data and key findings in a tabular format using predetermined data charting forms. Results were summarized using tables and associated narratives related to the review questions. Results: Of the 2153 studies, 18 (0.84%) were included in the final review. There was a high degree of variation across studies, including SDM definitions, standardized measures, technical integration, and implementation strategies. SDM tools that targeted established health care processes promoted their use. Integrating SDM templates and tools into an EHR appeared to improve the targeted outcomes of most (17/18, 94%) studies. Most SDM interventions were designed for clinicians. Patient-specific goals and values were included in 56% (10/18) of studies. The 2 most common study outcome measures were SDM-related measures and SDM tool use. Conclusions: Understanding how to integrate SDM tools directly into a clinician’s workflow within the EHR is a logical approach to promoting SDM into routine clinical practice. This review contributes to the literature by illuminating features of SDM tools that have been integrated into an EHR system. Standardization of SDM tools and processes, including the use of patient decision aids, is needed for consistency across SDM studies. The implementation approaches for SDM applications showed varying levels of planning and effort to promote SDM intervention awareness. Targeting accepted and established clinical processes may enhance the adoption and use of SDM tools. Future studies designed as randomized controlled trials are needed to expand the quality of the evidence base. This includes the study of integration methods into EHR systems as well as implementation methods and strategies deployed to operationalize the uptake of the SDM-integrated tools. Emphasizing patients’ goals and values is another key area for future studies. %M 39983125 %R 10.2196/59956 %U https://www.jmir.org/2025/1/e59956 %U https://doi.org/10.2196/59956 %U http://www.ncbi.nlm.nih.gov/pubmed/39983125 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e53087 %T Evaluation of the Quality of Delirium Website Content for Patient and Family Education: Cross-Sectional Study %A Krewulak,Karla %A Strayer,Kathryn %A Jaworska,Natalia %A Spence,Krista %A Foster,Nadine %A Kupsch,Scotty %A Sauro,Khara %A Fiest,Kirsten M %+ , Department of Critical Care Medicine, University of Calgary, MT 04111, 3260 Hospital Drive NW, Calgary, AB, , Canada, 1 9448768, kmfiest@ucalgary.ca %K education %K health information %K internet %K delirium %K patient %K caregiver %K brain lesions %K confusion %K inattentiveness %K disorientation %K family education %K information seeking %K readability %K high-quality websites %K accessibility %D 2025 %7 20.2.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Patients and families who have experienced delirium may seek information about delirium online, but the quality and reliability of online delirium-related websites are unknown. Objective: This study aimed to identify and evaluate online delirium-related websites that could be used for patient and family education. Methods: We searched Microsoft Bing, Google, and Yahoo using the keywords “delirium” and the misspelled “delerium” to identify delirium-related websites created to inform patients, families, and members of the public about delirium. The quality of identified delirium-related website content was evaluated by 2 authors using the validated DISCERN tool and the JAMA (Journal of the American Medical Association) benchmark criteria. Readability was assessed with the Simple Measure of Gobbledygook, the Flesch Reading Ease score, and the Flesch Kincaid grade level. Each piece of website content was assessed for its delirium-related information using a checklist of items co-designed by a working group, which included patients, families, researchers, and clinicians. Results: We identified 106 websites targeted toward patients and families, with most hospital-affiliated (21/106, 20%) from commercial websites (20/106, 19%), government-affiliated organizations (19/106, 18%), or from a foundation or advocacy group (16/106, 15%). The median time since the last content update was 3 (IQR 2-5) years. Most websites’ content (101/106, 95%) was written at a reading level higher than the recommended grade 6 level. The median DISCERN total score was 42 (IQR 33-50), with scores ranging from 20 (very poor quality) to 78 (excellent quality). The median delirium-related content score was 8 (IQR 6-9), with scores ranging from 1 to 12. Many websites lacked information on the short- and long-term outcomes of delirium as well as how common it is. The median JAMA benchmark score was 1 (IQR 1-3), indicating the quality of the websites’ content had poor transparency. Conclusions: We identified high-quality websites that could be used to educate patients, families, or the public about delirium. While most delirium-related website content generally meets quality standards based on DISCERN and JAMA benchmark criteria, high scores do not always ensure patient and family-friendliness. Many of the top-rated delirium content were text-heavy and complex in layout, which could be overwhelming for users seeking clear, concise information. Future efforts should prioritize the development of websites with patients and families, considering usability, accessibility, and cultural relevance to ensure they are truly effective for delirium education. %M 39977019 %R 10.2196/53087 %U https://www.jmir.org/2025/1/e53087 %U https://doi.org/10.2196/53087 %U http://www.ncbi.nlm.nih.gov/pubmed/39977019 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 12 %N %P e63364 %T A Health Professional Mentorship Platform to Improve Equitable Access to Abortion: Development, Usability, and Content Evaluation %A Abdulai,Abdul-Fatawu %A Duong,Cam %A Stroulia,Eleni %A Czerniak,Efrat %A Chiu,Rachel %A Mehta,Aashay %A Koike,Ken %A Norman,Wendy V %K medication abortion %K mifepristone %K web-based platform %K user-centered design %K underserved populations %K abortion %K equitable %K accessibility %K open-access website %K gender-affirming %K user-centered %K Canada %K unwanted pregnancy %K framework %D 2025 %7 19.2.2025 %9 %J JMIR Hum Factors %G English %X Background: Access to safe abortion care is a reproductive right for all individuals across Canada. Underserved populations are overrepresented among those with unintended pregnancies and particularly those seeking abortion. Yet, few resources exist to help health care and allied helping professionals provide culturally competent and gender-affirming abortion care to such a population group. Objective: This project aimed to redesign and adapt an existing subscription-based medication abortion mentorship platform into a culturally appropriate and gender-affirming open-access website of curated health professional resources to promote equitable, accessible, high-quality abortion care, particularly for underserved populations. Methods: We drew on a user-centered design framework to redesign the web platform in 5 iterative phases. Health care and allied helping professionals were engaged in each stage of the development process including the initial design of the platform, curation of the resources, review of the content, and evaluation of the wireframes and the end product. Results: This project resulted in an open-access bilingual (English and French) web-based platform containing comprehensive information and resources on abortion care for health care providers (physicians, nurse practitioners, and pharmacists) and allied helping professionals (midwives, medical officers, community workers, and social workers). The website incorporated information on clinical, logistical, and administrative guidance, including culturally competent and gender-affirming toolkits that could equip health care professionals with the requisite knowledge to provide abortion care for underserved populations. Conclusions: This platform contains resources that can increase the competencies of health care professionals to initiate and sustain culturally and contextually appropriate abortion care for underserved groups while clarifying myths and misconceptions that often militate against initiating abortion. Our resource also has the potential to support equitable access to high-quality abortion care, particularly for those among underserved populations who may have the greatest unmet need for abortion services yet face the greatest barriers to accessing care. %R 10.2196/63364 %U https://humanfactors.jmir.org/2025/1/e63364 %U https://doi.org/10.2196/63364 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e56038 %T Understanding the Engagement and Interaction of Superusers and Regular Users in UK Respiratory Online Health Communities: Deep Learning–Based Sentiment Analysis %A Li,Xiancheng %A Vaghi,Emanuela %A Pasi,Gabriella %A Coulson,Neil S %A De Simoni,Anna %A Viviani,Marco %A , %+ School of Business and Management, Queen Mary University of London, Mile End Road, Bethnal Green, London, E14NS, United Kingdom, 44 2078825555, x.l.li@qmul.ac.uk %K social media %K online health communities %K social network analysis %K sentiment analysis %K bio-bidirectional encoder representations from transformers %K asthma %K chronic obstructive pulmonary disease %D 2025 %7 13.2.2025 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 39946690 %R 10.2196/56038 %U https://www.jmir.org/2025/1/e56038 %U https://doi.org/10.2196/56038 %U http://www.ncbi.nlm.nih.gov/pubmed/39946690 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e62750 %T Digital Transformation in Patient Organizations: Interview and Focus Group Study %A Wallraf,Simon %A Köthemann,Sara %A Wiesemann,Claudia %A Wöhlke,Sabine %A Dierks,Marie-Luise %A Schmidt,Marion Andrea %A van Gils-Schmidt,Henk Jasper %A Lander,Jonas %+ Institute for Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Carl-Neuberg-Street 1, Hanover, 30625, Germany, 49 0511 532 4450, lander.jonas@mh-hannover.de %K patient organization %K patient support %K digitalization %K digital transformation %K health research %D 2025 %7 13.2.2025 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 39946181 %R 10.2196/62750 %U https://www.jmir.org/2025/1/e62750 %U https://doi.org/10.2196/62750 %U http://www.ncbi.nlm.nih.gov/pubmed/39946181 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 13 %N %P e56533 %T Assessment of Environmental, Sociocultural, and Physiological Influences on Women’s Toileting Decisions and Behaviors Using “Where I Go”: Pilot Study of a Mobile App %A Smith,Abigail R %A Mueller,Elizabeth R %A Lewis,Cora E %A Markland,Alayne %A Smerdon,Caroline %A Smith,Ariana L %A Sutcliffe,Siobhan %A Wyman,Jean F %A Low,Lisa Kane %A Miller,Janis M %A , %K ecological momentary assessment %K time location factors %K voiding diary %K voiding behaviors %K population studies %K mobile application %K app %K bladder health %K data collection tool %K decision support %D 2025 %7 12.2.2025 %9 %J JMIR Mhealth Uhealth %G English %X Background: Little is known about women’s decisions around toileting for urination and how those decisions influence moment-to-moment behaviors to manage bladder needs. The new smartphone app “Where I Go” captures such nuanced and granular data in real-world environments. Objective: This study aims to describe participant engagement with “Where I Go”, variation in novel parameters collected, and readiness for the data collection tool’s use in population-based studies. Methods: “Where I Go” has three components: (1) real-time data, (2) short look-back periods (3‐4 h), and (3) event location (GPS recorded at each interaction). The sample size was 44 women. Recording of real-time toileting events and responding to look-back questions was measured over 2 days of data collection. The participant’s self-entered location descriptions and the automatic GPS recordings were compared. Results: A total of 44 women with an average age of 44 (range 21-85) years interacted with the app. Real-time reporting of at least 1 toileting event per day was high (38/44, 86%, on day 1 and 40/44, 91%, on day 2) with a median of 5 (IQR 3-7 on day 1 and IQR 3-8 on day 2) toileting events recorded each day. Toileting most commonly occurred at home (85/140, 61%, on day 1 and 129/171, 75%, on day 2) due to a need to go (114/140, 66%, on day 1 and 153/171, 74%, on day 2). The most common reasons for delaying toileting were “work duties” (33/140, 21%, on day 1 and 21/171, 11%, on day 2) and “errands or traveling” (19/140, 12%, on day 1 and 19/171, 10%, on day 2). Response to at least 1 look-back notification was similarly high (41/44, 93%, on day 1 and 42/44, 95%, on day 2), with number of responses higher on average on day 2 compared with day 1 (mean on day 1=3.2, 95% CI 3.0-3.5; mean on day 2=4.3, 95% CI 3.9-4.7; P<.001). Median additional toileting events reported on the look-back survey were 1 (IQR 1-2) and 2 (IQR 1-2) on days 1 and 2, respectively. Overall concordance between self-reported location recording and GPS was 76% (188/247). Participants reported lower urge ratings when at home versus away when reporting real-time toileting (median rating 61, IQR 41-84 vs 72, IQR 56-98), and daily fluid intake showed a small to medium positive correlation with toileting frequency (day 1 r=0.3, day 2 r=0.24). Toileting frequency reported in “Where I Go” showed a small positive correlation with the frequency item from the International Consultation on Incontinence Questionnaire (r=0.31 with day 1 toileting frequency and r=0.21 with day 2 toileting frequency). Conclusions: “Where I Go” has potential to increase the understanding of factors that affect women’s toileting decisions and long-term bladder health. We anticipate its use as a data collection tool in population-based studies. International Registered Report Identifier (IRRID): RR2-10.2196/54046 %R 10.2196/56533 %U https://mhealth.jmir.org/2025/1/e56533 %U https://doi.org/10.2196/56533 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e48775 %T Subtyping Social Determinants of Health in the "All of Us" Program: Network Analysis and Visualization Study %A Bhavnani,Suresh K %A Zhang,Weibin %A Bao,Daniel %A Raji,Mukaila %A Ajewole,Veronica %A Hunter,Rodney %A Kuo,Yong-Fang %A Schmidt,Susanne %A Pappadis,Monique R %A Smith,Elise %A Bokov,Alex %A Reistetter,Timothy %A Visweswaran,Shyam %A Downer,Brian %+ School of Public and Population Health, Department of Biostatistics & Data Science, University of Texas Medical Branch, 301 University Boulevard, Galveston, TX, 77555, United States, 1 (734) 772 1929, subhavna@utmb.edu %K social determinants of health %K All of Us %K bipartite networks %K financial resources %K health care %K health outcomes %K precision medicine %K decision support %K health industry %K clinical implications %K machine learning methods %D 2025 %7 11.2.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Social determinants of health (SDoH), such as financial resources and housing stability, account for between 30% and 55% of people’s health outcomes. While many studies have identified strong associations between specific SDoH and health outcomes, little is known about how SDoH co-occur to form subtypes critical for designing targeted interventions. Such analysis has only now become possible through the All of Us program. Objective: This study aims to analyze the All of Us dataset for addressing two research questions: (1) What are the range of and responses to survey questions related to SDoH? and (2) How do SDoH co-occur to form subtypes, and what are their risks for adverse health outcomes? Methods: For question 1, an expert panel analyzed the range of and responses to SDoH questions across 6 surveys in the full All of Us dataset (N=372,397; version 6). For question 2, due to systematic missingness and uneven granularity of questions across the surveys, we selected all participants with valid and complete SDoH data and used inverse probability weighting to adjust their imbalance in demographics. Next, an expert panel grouped the SDoH questions into SDoH factors to enable more consistent granularity. To identify the subtypes, we used bipartite modularity maximization for identifying SDoH biclusters and measured their significance and replicability. Next, we measured their association with 3 outcomes (depression, delayed medical care, and emergency room visits in the last year). Finally, the expert panel inferred the subtype labels, potential mechanisms, and targeted interventions. Results: The question 1 analysis identified 110 SDoH questions across 4 surveys covering all 5 domains in Healthy People 2030. As the SDoH questions varied in granularity, they were categorized by an expert panel into 18 SDoH factors. The question 2 analysis (n=12,913; d=18) identified 4 biclusters with significant biclusteredness (Q=0.13; random-Q=0.11; z=7.5; P<.001) and significant replication (real Rand index=0.88; random Rand index=0.62; P<.001). Each subtype had significant associations with specific outcomes and had meaningful interpretations and potential targeted interventions. For example, the Socioeconomic barriers subtype included 6 SDoH factors (eg, not employed and food insecurity) and had a significantly higher odds ratio (4.2, 95% CI 3.5-5.1; P<.001) for depression when compared to other subtypes. The expert panel inferred implications of the results for designing interventions and health care policies based on SDoH subtypes. Conclusions: This study identified SDoH subtypes that had statistically significant biclusteredness and replicability, each of which had significant associations with specific adverse health outcomes and with translational implications for targeted SDoH interventions and health care policies. However, the high degree of systematic missingness requires repeating the analysis as the data become more complete by using our generalizable and scalable machine learning code available on the All of Us workbench. %M 39932771 %R 10.2196/48775 %U https://www.jmir.org/2025/1/e48775 %U https://doi.org/10.2196/48775 %U http://www.ncbi.nlm.nih.gov/pubmed/39932771 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 8 %N %P e67289 %T Community Caregivers’ Perspectives on Health IT Use for Children With Medical Complexity: Qualitative Interview Study %A Elkourdi,Farah %A Asan,Onur %+ Department of Systems and Enterprises, Stevens Institute of Technology, 1 Castle Point Terrace, Hoboken, NJ, 07030, United States, 1 2012165514, oasan@stevens.edu %K pediatric care %K children with medical complexity %K family-centered care %K health information technology %K health care software solutions %K mobile phone %K artificial intelligence %D 2025 %7 10.2.2025 %9 Original Paper %J JMIR Pediatr Parent %G English %X 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. %M 39928943 %R 10.2196/67289 %U https://pediatrics.jmir.org/2025/1/e67289 %U https://doi.org/10.2196/67289 %U http://www.ncbi.nlm.nih.gov/pubmed/39928943 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e60862 %T Privacy Concerns Versus Personalized Health Content—Pregnant Individuals’ Willingness to Share Personal Health Information on Social Media: Survey Study %A Hao,Haijing %A Lee,Yang W %A Sharko,Marianne %A Li,Qilu %A Zhang,Yiye %K privacy concerns %K trust %K pregnancy %K health information seeking %K pregnant women %K maternal %K maternity %K childbearing %K web-based information %K health information %K mental health %K internet %K social support %K technology %K mobile health %K mHealth %K digital health %K health informatics %K social media %D 2025 %7 10.2.2025 %9 %J JMIR Form Res %G English %X Background: Often lacking immediate access to care providers, pregnant individuals frequently turn to web-based sources for information to address their evolving physical and mental health needs. Social media has gained increasing prominence as a source of news and information despite privacy concerns and unique risks posed to the pregnant population. Objectives: This study investigated the extent to which patients may be willing to disclose personal health information to social media companies in exchange for more personalized health content. Methods: We designed and deployed an electronic survey to pregnant individuals worldwide electronically in 2023. We used the classical Internet Users’ Information Privacy Concerns (IUIPC) model to examine how privacy concerns modulate pregnant individuals’ behaviors and beliefs regarding risk and trust when using social media for health purposes. Results were analyzed using partial least squares structural equation modeling. Results: Among 317 respondents who initiated the survey, 84% (265/317) of the respondents remained in the study, providing complete responses. Among them, 54.7% (145/265) indicated willingness to provide their personalized health information for receiving personalized health content via social media, while 26% (69/265) were uncertain and 19.3% (51/265) were opposed. Our estimated IUIPC model results are statistically significant and qualitatively align with the classic IUIPC model for the general population, which was previously found in an e-commerce context. The structural model revealed that privacy concerns (IUIPC) negatively affected trusting beliefs (β=−0.408; P<.001) and positively influenced risk beliefs (β=0.442; P<.001). Trusting beliefs negatively impacted risk beliefs (β=−o.362; P<.001) and positively affected the intention to disclose personal health information (β=o.266; P<.001). Risk beliefs negatively influenced the intention to disclose (β=−0.281; P<.001). The model explained 41.5% of the variance in the intention to disclose personal health information (R²=0.415). In parallel with pregnant individuals’ willingness to share, we find that they have heightened privacy concerns and their use of social media for information seeking is largely impacted by their trust in the platforms. This heightened concern significantly affects both their trusting beliefs, making them less inclined to trust social media companies, and their risk beliefs, leading them to perceive greater risks in sharing personal health information. However, within this population, an increase in trust toward social media companies leads to a more substantial decrease in perceived risks than what has been previously observed in the general population. Conclusions: We find that more than half of the pregnant individuals are open to sharing their personal health information to receive personalized content about health via social media, although they have more privacy concerns than the general population. This study emphasizes the need for policy regarding the protection of health data on social media for the pregnant population and beyond. %R 10.2196/60862 %U https://formative.jmir.org/2025/1/e60862 %U https://doi.org/10.2196/60862 %0 Journal Article %@ 2561-9128 %I JMIR Publications %V 8 %N %P e66440 %T Agreement Between Provider-Completed and Patient-Completed Preoperative Frailty Screening Using the Clinical Risk Analysis Index: Cross-Sectional Questionnaire Study %A Khalighi,Mehraneh %A Thomas,Amy C %A Brown,Karl J %A Ritchey,Katherine C %+ Hospital and Specialty Medicine, VA Puget Sound Health Care System, 1660 South Columbian Way, S-112-SDU, Seattle, WA, 98108, United States, 1 206 764 2183, mehraneh.khalighi@va.gov %K Risk Analysis Index %K preoperative screening %K questionnaire %K frailty %K self-reported %K veteran %K hip %K knee %K arthroplasty %K elective surgery %K cross-sectional %K quality improvement %D 2025 %7 10.2.2025 %9 Original Paper %J JMIR Perioper Med %G English %X Background: Frailty is associated with postoperative morbidity and mortality. Preoperative screening and management of persons with frailty improves postoperative outcomes. The Clinical Risk Analysis Index (RAI-C) is a validated provider-based screening tool for assessing frailty in presurgical populations. Patient self-screening for frailty may provide an alternative to provider-based screening if resources are limited; however, the agreement between these 2 methods has not been previously explored. Objective: The objective of our study was to examine provider-completed versus patient-completed RAI-C assessments to identify areas of disagreement between the 2 methods and inform best practices for RAI-C screening implementation. Methods: Orthopedic physicians and physician assistants completed the RAI-C assessment on veterans aged 65 years and older undergoing elective total joint arthroplasty (eg, total hip or knee arthroplasty) and documented scores into the electronic health record during their preoperative clinic evaluation. Participants were then mailed the same RAI-C form after preoperative evaluation and returned responses to study coordinators. Agreement between provider-completed and patient-completed RAI-C assessments and differences within individual domains were compared. Results: A total of 49 participants aged 65 years and older presenting for total joint arthroplasty underwent RAI-C assessment between November 2022 and August 2023. In total, 41% (20/49) of participants completed and returned an independent postvisit RAI-C assessment before surgery and within 180 days of their initial evaluation. There was a moderate but statistically significant correlation between provider-completed and patient-completed RAI-C assessments (r=0.62; 95% CI 0.25-0.83; P=.003). Provider-completed and patient-completed RAI-C assessments resulted in the same frailty classification in 60% (12/20) of participants, but 40% (8/20) of participants were reclassified to a more frail category based on patient-completed assessment. Agreement was the lowest between provider-completed and patient-completed screening questions regarding memory and activities of daily living. Conclusions: RAI-C had moderate agreement when completed by providers versus the participants themselves, with more than a third of patient-completed screens resulting in a higher frailty classification. Future studies will need to explore the differences between and accuracy of RAI-C screening approaches to inform best practices for preoperative RAI-C assessment implementation. %M 39928399 %R 10.2196/66440 %U https://periop.jmir.org/2025/1/e66440 %U https://doi.org/10.2196/66440 %U http://www.ncbi.nlm.nih.gov/pubmed/39928399 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 8 %N %P e59665 %T Enhancing Older Adults’ Lives Through Positive Aging Perception, Quality-of-Life Enhancement, and Social Support to Drive Acceptance and Readiness Toward Indoor Assistive Technology: Cross-Sectional Study %A Wong,Ka Po %A Teh,Pei-Lee %A Lim,Weng Marc %A Lee,Shaun Wen Huey %+ , Gerontechnology Laboratory and School of Business, Monash University Malaysia, Jalan Lagoon Selatan, Sunway City, 47500, Malaysia, 60 355144971, teh.pei.lee@monash.edu %K indoor assistive technology %K positive aging perceptions %K quality of life %K social support %K technology acceptance %K technology readiness %D 2025 %7 5.2.2025 %9 Original Paper %J JMIR Aging %G English %X Background: The growing aging population faces increasing mobility limitations, highlighting the need for assistive technologies as potential solutions. These technologies support the independence and well-being of older adults and individuals with mobility challenges. Indoor mobility is essential for daily activities and significantly impacts their lives. Limited indoor mobility can reduce quality of life and heighten the risk of falls. Objective: This study explores how positive aging perceptions, quality-of-life enhancements, and social support influence the acceptance and readiness of indoor assistive technologies among older adults. Methods: A cross-sectional study was conducted at a gerontechnology laboratory, requiring participants to visit the facility in person. Each 60-minute session included demonstrations of various indoor assistive technologies and the completion of a questionnaire. The assistive technologies showcased encompassed a wide range of devices. Participants’ positive aging perceptions, quality-of-life enhancements, social support, technology acceptance, and readiness were measured using validated scales. Data were analyzed with AMOS (version 28; IBM Corp) and SPSS (version 28; IBM Corp), using structural equation modeling and multivariate analysis of covariance to assess the effects of predictors while controlling for demographic factors. Results: A total of 104 older adults aged 60 years and older participated, with a mean age of 67.92 (SD 5.68) years. Structural equation modeling indicated that positive aging perception has a significant influence on older adults’ control beliefs (P=.095), comfort (P=.047), and confidence (P<.001) in gerontechnology. Multivariate analysis revealed significant combined effects of quality-of-life enhancement (P=.01) and social support (P=.03) on technology acceptance and readiness, wherein quality-of-life enhancement (P=.001) and social support (P=.008) negatively impacted security perception. Among demographic variables, educational level significantly impacted gerontechnology confidence (P=.004) while ethnicity influenced optimism (P=.003). Conclusions: This study sheds light on key factors affecting older adults’ acceptance and readiness to adopt indoor assistive technologies. Findings highlight the importance of fostering positive aging perceptions through these technologies. Addressing issues related to control beliefs, comfort, and confidence in gerontechnology is essential to enhance technology acceptance and readiness among older adults. Future research should investigate the underlying mechanisms and create targeted interventions to support successful technology adoption in this population. %M 39908542 %R 10.2196/59665 %U https://aging.jmir.org/2025/1/e59665 %U https://doi.org/10.2196/59665 %U http://www.ncbi.nlm.nih.gov/pubmed/39908542 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e66666 %T Addressing the “Black Hole” of Low Back Pain Care With Clinical Decision Support: User-Centered Design and Initial Usability Study %A Rudin,Robert S %A Herman,Patricia M %A Vining,Robert %K low back pain %K clinical decision support %K user-centered design %K usability %K back pain %K low back pain care %K pain %K clinical decision %K societal burden %K substantial %K burden %K evidence-based %K treatment %K diagnosis %K support tool %K clinicians %K chiropractic %K chiropractor %K reviews %K scenario-based interviews %K interviews %D 2025 %7 4.2.2025 %9 %J JMIR Form Res %G English %X 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. %R 10.2196/66666 %U https://formative.jmir.org/2025/1/e66666 %U https://doi.org/10.2196/66666 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e62670 %T Electronic Health Record Data Collection Practices to Advance Standardization and Interoperability of Patient Preferences for Interpretation Services: Qualitative Study %A Heaney-Huls,Krysta %A Shams,Rida %A Nwefo,Ruth %A Kane,Rachel %A Gordon,Janna %A Laffan,Alison M %A Stare,Scott %A Dullabh,Prashila %+ , NORC at the University of Chicago, 55 E Monroe St 30th Floor, Chicago, IL, 60603, United States, 1 7734017110, heaney-huls-krysta@norc.org %K health information exchange %K interoperability %K electronic health records %K interpreter %K limited English proficiency %K communication barriers %D 2025 %7 31.1.2025 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 39888652 %R 10.2196/62670 %U https://www.jmir.org/2025/1/e62670 %U https://doi.org/10.2196/62670 %U http://www.ncbi.nlm.nih.gov/pubmed/39888652 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e65974 %T Impact of Online Interactive Decision Tools on Women’s Decision-Making Regarding Breast Cancer Screening: Systematic Review and Meta-Analysis %A Villain,Patricia %A Downham,Laura %A Le Bonniec,Alice %A Bauquier,Charlotte %A Mandrik,Olena %A Nadarzynski,Tom %A Donelle,Lorie %A Murillo,Raúl %A Tolma,Eleni L %A Johnson,Sonali %A Soler-Michel,Patricia %A Smith,Robert %+ International Agency for Research on Cancer, World Health Organization, 25 Avenue Tony Garnier CS 90627, Lyon, 69366, France, 33 4 72 73 84 40, patriciavillain1@gmail.com %K breast cancer screening %K decision-making %K online interactive %K decision aid %K average risk %K shared decision-making %K screening participation %K cognitive determinants %K women %D 2025 %7 29.1.2025 %9 Review %J J Med Internet Res %G English %X Background: The online nature of decision aids (DAs) and related e-tools supporting women’s decision-making regarding breast cancer screening (BCS) through mammography may facilitate broader access, making them a valuable addition to BCS programs. Objective: This systematic review and meta-analysis aims to evaluate the scientific evidence on the impacts of these e-tools and to provide a comprehensive assessment of the factors associated with their increased utility and efficacy. Methods: We followed the 2020 PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and conducted a search of MEDLINE, PsycINFO, Embase, CINAHL, and Web of Science databases from August 2010 to April 2023. We included studies reporting on populations at average risk of breast cancer, which utilized DAs or related e-tools, and assessed women’s participation in BCS by mammography or other key cognitive determinants of decision-making as primary or secondary outcomes. We conducted meta-analyses on the identified randomized controlled trials, which were assessed using the revised Cochrane Risk of Bias 2 (RoB 2) tool. We further explored intermediate and high heterogeneity between studies to enhance the validity of our results. Results: In total, 22 different e-tools were identified across 31 papers. The degree of tailoring in the e-tools, specifically whether the tool was fully tailored or featured with tailoring, was the most influential factor in women’s decision-making regarding BCS. Compared with control groups, tailored e-tools significantly increased women’s long-term participation in BCS (risk ratio 1.14, 95% CI 1.07-1.23, P<.001, I2=0%). Tailored-to-breast-cancer-risk e-tools increased women’s level of worry (mean difference 0.31, 95% CI 0.13-0.48, P<.001, I2=0%). E-tools also improved women’s adequate knowledge of BCS, with features-with-tailoring e-tools designed and tested with the general population being more effective than tailored e-tools designed for or tested with non-BCS participants (χ21=5.1, P=.02). Features-with-tailoring e-tools increased both the rate of women who intended not to undergo BCS (risk ratio 1.88, 95% CI 1.43-2.48, P<.001, I2=0%) and the rate of women who had made an informed choice regarding their intention to undergo BCS (risk ratio 1.60, 95% CI 1.09-2.33, P=.02, I2=91%). Additionally, these tools decreased the proportion of women with decision conflict (risk ratio 0.77, 95% CI 0.65-0.91, P=.002, I2=0%). Shared decision-making was not formally evaluated. This review is limited by small sample sizes, including only a few studies in the meta-analysis, some with a high risk of bias, and high heterogeneity between the studies and e-tools. Conclusions: Features-with-tailoring e-tools could potentially negatively impact BCS programs by fostering negative intentions and attitudes toward BCS participation. Conversely, tailored e-tools may increase women’s participation in BCS but, when tailored to risk, they may elevate their levels of worry. To maximize the effectiveness of e-tools while minimizing potential negative impacts, we advocate for an “on-demand” layered approach to their design. %M 39879616 %R 10.2196/65974 %U https://www.jmir.org/2025/1/e65974 %U https://doi.org/10.2196/65974 %U http://www.ncbi.nlm.nih.gov/pubmed/39879616 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e62931 %T Mixed Comparative Evaluation of a Training Program Dedicated to Cystic Fibrosis Reference Centers: Protocol for the Pilot Implementation of Shared Decision-Making in the Treatment of Diabetes in Adult Patients With Cystic Fibrosis %A Moumjid,Nora %A Gotte,Constance %A Hommey,Sophie %A Poupon Bourdy,Stéphanie %A Haesebaert,Julie %A Durieu,Isabelle %A Reynaud,Quitterie %+ Département Prévention Cancer Environnement Centre Léon Bérard, P2S UR 4129, Université Claude Bernard Lyon 1, 7-11 rue Guillaume Paradin, Villeurbanne, 69008, France, 33 4 78 77 72 33, nora.moumjid@univ-lyon1.fr %K shared decision-making %K implementation %K training %K decision aid %K cystic fibrosis %D 2025 %7 28.1.2025 %9 Protocol %J JMIR Res Protoc %G English %X Background: Diabetes affects half of the patients with cystic fibrosis who are aged 30 years and older. Diabetes progresses asymptomatically over a long period of time. Two treatment options are possible: start insulin as soon as cystic fibrosis diagnosis is made with the additional constraints of cystic fibrosis or wait while monitoring the patient’s clinical condition and start insulin when diabetes symptoms develop and therefore later. This situation is particularly well suited to shared decision-making (SDM) between the physician (health care team) and patient/relatives. Objective: The aim of this study was to perform qualitative and quantitative analyses for evaluating the outcomes and experience of SDM implementation between the physician/health care team trained for SDM and patients/their relatives for cystic fibrosis–related diabetes. Methods: A quasi-experimental with a comparison study will be developed. Three cystic fibrosis reference centers (CFRCs) will be trained in SDM by using a web-based training, including a validated decision aid and coaching for physicians and the medical team. Two control CFRCs will maintain their usual practices. A qualitative analysis through observation of consultations, individual semistructured interviews with patients, and focus groups in CFRCs will be conducted based on a thematic content analysis. Questionnaires related to decision-making and experience of decision-making with and without SDM implementation will be administered to patients and physicians. Results: Forty patients will be included (8 patients in each center), that is, 60 consultation observations (2 consultations per patient in the intervention groups given the modalities of the SDM process) will be conducted in 2025. Eight focus groups will be conducted in the 5 centers (2 groups in each intervention CFRC and 1 group in each control CFRC). This qualitative corpus plus responses to the patient and physician questionnaires will make it possible to know whether the practice of SDM in CFRCs is increased by an implementation strategy and to analyze the experience of patients and their relatives regarding decision-making modalities. Analysis of the outcomes and experience of the implementation of SDM are of importance to identify the facilitators and barriers to SDM from patients’ and CFRCs’ point of views. Conclusions: Our study will give us keys to adapt, improve, and disseminate SDM more widely in the context of cystic fibrosis therapy. SDM could thus be used in routine clinical practice in CFRCs at the national level. Trial Registration: ClinicalTrials.gov NCT04891159; https://clinicaltrials.gov/study/NCT04891159?id=NCT04891159 International Registered Report Identifier (IRRID): PRR1-10.2196/62931 %M 39874570 %R 10.2196/62931 %U https://www.researchprotocols.org/2025/1/e62931 %U https://doi.org/10.2196/62931 %U http://www.ncbi.nlm.nih.gov/pubmed/39874570 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e60829 %T Designing the First Pregnancy Guaranteed Income Program in the United States: Qualitative Needs Assessment and Human-Centered Design to Develop the Abundant Birth Project %A Karasek,Deborah %A Williams,Jazzmin C %A Taylor,Michaela A %A De La Cruz,Monica M %A Arteaga,Stephanie %A Bell,Sabra %A Castillo,Esperanza %A Chand,Maile A %A Coats,Anjeanette %A Hubbard,Erin M %A Love-Goodlett,Latriece %A Powell,Breezy %A Spellen,Solaire %A Malawa,Zea %A Gomez,Anu Manchikanti %+ Sexual Health and Reproductive Equity Program, School of Social Welfare, University of California, Berkeley, 110 Haviland Hall, MC 7400, Berkeley, CA, 94720-7400, United States, 1 510 6420722, anugomez@berkeley.edu %K maternal and child health %K economics %K public health %K qualitative research methods %K programs (evaluation and funding) %K community-centered %K pregnancy %K first pregnancy %K behavioral interventions %K racial health %K financial stress %K Abundant Birth Project %K infant health %K infant %K Black %D 2025 %7 27.1.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Racial inequities in pregnancy outcomes persist despite investments in clinical, educational, and behavioral interventions, indicating that a new approach is needed to address the root causes of health disparities. Guaranteed income during pregnancy has the potential to narrow racial health inequities for birthing people and infants by alleviating financial stress. Objective: We describe community-driven formative research to design the first pregnancy-guaranteed income program in the United States—the Abundant Birth Project (ABP). Informed by birth equity and social determinants of health perspectives, ABP targets upstream structural factors to improve racial disparities in maternal and infant health. Methods: The research team included community researchers, community members with lived experience as Black or Pacific Islander pregnant, and parenting people in the San Francisco Bay Area. The team conducted needs assessment interviews and facilitated focus groups with participants using human-centered design methods. Needs assessment participants later served as co-designers of the ABP program and research, sharing their experiences with financial hardships and government benefits programs and providing recommendations on key program elements, including fund disbursement, eligibility, and amount. Results: Housing affordability and the high cost of living in San Francisco emerged as significant sources of stress in pregnancy. Participants reported prohibitively low income eligibility thresholds and burdensome enrollment processes as challenges or barriers to existing social services. These insights guided the design of prototypes of ABP’s program components, which were used in a design sprint to determine the final components. Based on this design process, the ABP program offered US $1000/month for 12 months to pregnant Black and Pacific Islander people, selected through a lottery called an abundance drawing. Conclusions: The formative design process maximized community input and shared decision-making to co-design a guaranteed income program for Black and Pacific Islander women and people. Our upstream approach and community research model can inform the development of public health and social service programs. %M 39869889 %R 10.2196/60829 %U https://formative.jmir.org/2025/1/e60829 %U https://doi.org/10.2196/60829 %U http://www.ncbi.nlm.nih.gov/pubmed/39869889 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e63818 %T Developing Assessments for Key Stakeholders in Pediatric Congenital Heart Disease: Qualitative Pilot Study to Inform Designing of a Medical Education Toy %A Barbazi,Neda %A Shin,Ji Youn %A Hiremath,Gurumurthy %A Lauff,Carlye Anne %+ Department of Design Innovation, College of Design, University of Minnesota, Twin Cities, 13 Rapson Hall, 89 Church Street SE, Minneapolis, MN, 55455-0213, United States, 1 724 889 5511, carlye@umn.edu %K assessment %K congenital heart disease %K children health literacy %K health education %K caregiving %K patient-centered care %K design %K qualitative pilot %K children health %K educational interventions %D 2025 %7 27.1.2025 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 39869901 %R 10.2196/63818 %U https://formative.jmir.org/2025/1/e63818 %U https://doi.org/10.2196/63818 %U http://www.ncbi.nlm.nih.gov/pubmed/39869901 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e67143 %T What’s Going On With Me and How Can I Better Manage My Health? The Potential of GPT-4 to Transform Discharge Letters Into Patient-Centered Letters to Enhance Patient Safety: Prospective, Exploratory Study %A Eisinger,Felix %A Holderried,Friederike %A Mahling,Moritz %A Stegemann–Philipps,Christian %A Herrmann–Werner,Anne %A Nazarenus,Eric %A Sonanini,Alessandra %A Guthoff,Martina %A Eickhoff,Carsten %A Holderried,Martin %+ Tübingen Institute for Medical Education, University of Tübingen, Elfriede-Aulhorn-Str. 10, Tübingen, 72076, Germany, 49 1704848650, Friederike.Holderried@med.uni-tuebingen.de %K GPT-4 %K patient letters %K health care communication %K artificial intelligence %K patient safety %K patient education %D 2025 %7 21.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: For hospitalized patients, the discharge letter serves as a crucial source of medical information, outlining important discharge instructions and health management tasks. However, these letters are often written in professional jargon, making them difficult for patients with limited medical knowledge to understand. Large language models, such as GPT, have the potential to transform these discharge summaries into patient-friendly letters, improving accessibility and understanding. Objective: This study aims to use GPT-4 to convert discharge letters into more readable patient-centered letters. We evaluated how effectively and comprehensively GPT-4 identified and transferred patient safety–relevant information from the discharge letters to the transformed patient letters. Methods: Three discharge letters were created based on common medical conditions, containing 72 patient safety–relevant pieces of information, referred to as “learning objectives.” GPT-4 was prompted to transform these discharge letters into patient-centered letters. The resulting patient letters were analyzed for medical accuracy, patient centricity, and the ability to identify and translate the learning objectives. Bloom’s taxonomy was applied to analyze and categorize the learning objectives. Results: GPT-4 addressed the majority (56/72, 78%) of the learning objectives from the discharge letters. However, 11 of the 72 (15%) learning objectives were not included in the majority of the patient-centered letters. A qualitative analysis based on Bloom’s taxonomy revealed that learning objectives in the “Understand” category (9/11) were more frequently omitted than those in the “Remember” category (2/11). Most of the missing learning objectives were related to the content field of “prevention of complications.” By contrast, learning objectives regarding “lifestyle” and “organizational” aspects were addressed more frequently. Medical errors were found in a small proportion of sentences (31/787, 3.9%). In terms of patient centricity, the patient-centered letters demonstrated better readability than the discharge letters. Compared with discharge letters, they included fewer medical terms (132/860, 15.3%, vs 165/273, 60/4%), fewer abbreviations (43/860, 5%, vs 49/273, 17.9%), and more explanations of medical terms (121/131, 92.4%, vs 0/165, 0%). Conclusions: Our study demonstrates that GPT-4 has the potential to transform discharge letters into more patient-centered communication. While the readability and patient centricity of the transformed letters are well-established, they do not fully address all patient safety–relevant information, resulting in the omission of key aspects. Further optimization of prompt engineering may help address this issue and improve the completeness of the transformation. %M 39836954 %R 10.2196/67143 %U https://www.jmir.org/2025/1/e67143 %U https://doi.org/10.2196/67143 %U http://www.ncbi.nlm.nih.gov/pubmed/39836954 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e64265 %T Insights From Diverse Perspectives on Social Media Messages to Inform Young Adults With Cancer About Clinical Trials: Focus Group Study %A Beauchemin,Melissa P %A Walker,Desiree %A Rosen,Allison %A Frazer,Maria %A Eisenberger,Meital %A Khurana,Rhea K %A Bentlyewski,Edward %A Fedorko,Victoria %A Basch,Corey H %A Hillyer,Grace C %K young adults %K adolescent and young adult cancer %K cancer %K cancer treatment %K clinical trials %K clinical trial awareness %K clinical trial enrollment %K clinical trial knowledge %K clinical trial attitudes %K clinical trial enrollment barriers %K social media %K social media messages %K psychosocial %K United States %D 2025 %7 20.1.2025 %9 %J JMIR Form Res %G English %X Background: Low rates of adolescent and young adult (YA; aged 15-39 y) clinical trial enrollment (CTE), particularly among underserved groups, have resulted in a lack of standardized cancer treatments and follow-up guidelines for this group that may limit improvement in cancer treatments and survival outcomes for YAs. Objective: To understand and address unique barriers to CTE, we conducted focus groups to learn about informational, financial, and psychosocial needs of YAs surrounding CTE and identify strategies to address these barriers. Methods: We conducted 5 focus groups in 2023 among a diverse sample of YA patients from across the United States. An interview guide was developed collaboratively with YA advocates. Specifically, informational needs, financial concerns, and psychosocial issues were explored, and participants were probed to suggest strategies, especially those that leverage technology, to address these barriers. Sessions were audio recorded, transcribed, and coded using direct content analysis. Findings were synthesized through consensus discussions. Results: We confirmed the previously proposed thematic barriers regarding YA CTE and identified 9 subthemes: awareness, lack of clear and accessible CTE information, fear of the unknown, assumptions about costs, insurance coverage, navigating financial responsibilities, clinical trial discussions, clinical trial misconceptions, and desire for a support network. Throughout, YAs mentioned needs that might be addressed through informational outreach leveraging digital technology, the internet, and social media. Conclusions: This study expands knowledge of YA perceived barriers to CTE. These findings suggest that leveraging digital technology to disseminate reliable information to address needs may be an effective strategy to improve clinical trial participation in the YA population. %R 10.2196/64265 %U https://formative.jmir.org/2025/1/e64265 %U https://doi.org/10.2196/64265 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e56523 %T Public Understanding and Expectations of Digital Health Evidence Generation: Focus Group Study %A Bondaronek,Paulina %A Li,Jingfeng %A Potts,Henry W W %K mobile apps %K digital health %K public expectations %K evidence of effectiveness %K health risk perception %K effectiveness %K health risk %K health app %K public health %K well-being %K public trust %K diagnostic tools %K safety %K mobile phone %D 2025 %7 20.1.2025 %9 %J JMIR Form Res %G English %X Background: The rapid proliferation of health apps has not been matched by a comparable growth in scientific evaluations of their effectiveness, particularly for apps available to the public. This gap has prompted ongoing debate about the types of evidence necessary to validate health apps, especially as the perceived risk level varies from wellness tools to diagnostic aids. The perspectives of the general public, who are direct stakeholders, are notably underrepresented in discussions on digital health evidence generation. Objective: This study aimed to explore public understanding and expectations regarding the evidence required to demonstrate health apps’ effectiveness, including at varying levels of health risk. Methods: A total of 4 focus group discussions were held with UK residents aged 18 years and older, recruited through targeted advertisements to ensure demographic diversity. Participants discussed their views on evidence requirements for 5 hypothetical health apps, ranging from low-risk wellness apps to high-risk diagnostic tools. Focus groups were moderated using a structured guide, and data were analyzed using reflexive thematic analysis to extract common themes. Results: A total of 5 key themes were established: personal needs, app functionality, social approval, expectations of testing, and authority. Participants relied on personal experiences and social endorsements when judging the effectiveness of low-risk digital health interventions, while making minimal reference to traditional scientific evidence. However, as the perceived risk of an app increased, there was a noticeable shift toward preferring evidence from authoritative sources, such as government or National Health Service endorsements. Conclusions: The public have a preference for evidence that resonates on a personal level, but also show a heightened demand for authoritative guidance as the potential risk of digital health interventions increases. These perspectives should guide developers, regulators, and policy makers as they balance how to achieve innovation, safety, and public trust in the digital health landscape. Engaging the public in evidence-generation processes and ensuring transparency in app functionality and testing can bridge the gap between public expectations and regulatory standards, fostering trust in digital health technologies. %R 10.2196/56523 %U https://formative.jmir.org/2025/1/e56523 %U https://doi.org/10.2196/56523 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 11 %N %P e59301 %T Guidelines for Patient-Centered Documentation in the Era of Open Notes: Qualitative Study %A Vanka,Anita %A Johnston,Katherine T %A Delbanco,Tom %A DesRoches,Catherine M %A Garcia,Annalays %A Salmi,Liz %A Blease,Charlotte %+ Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, 330 Brookline Avenue, Deaconess 301, Boston, MA, 02215-5400, United States, 1 617 632 8350, avanka@bidmc.harvard.edu %K open notes %K patient-centered documentation skills %K medical student education %K 21st Century Cures Act %D 2025 %7 20.1.2025 %9 Original Paper %J JMIR Med Educ %G English %X Background: Patients in the United States have recently gained federally mandated, free, and ready electronic access to clinicians’ computerized notes in their medical records (“open notes”). This change from longstanding practice can benefit patients in clinically important ways, but studies show some patients feel judged or stigmatized by words or phrases embedded in their records. Therefore, it is imperative that clinicians adopt documentation techniques that help both to empower patients and minimize potential harms. Objective: At a time when open and transparent communication among patients, families, and clinicians can spread more easily throughout medical practice, this inquiry aims to develop informed guidelines for documentation in medical records. Methods: Through a series of focus groups, preliminary guidelines for documentation language in medical records were developed by health professionals and patients. Using a structured focus group decision guide, we conducted 4 group meetings with different sets of 27 participants: physicians experienced with writing open notes (n=5), patients accustomed to reviewing their notes (n=8), medical student educators (n=7), and resident physicians (n=7). To generate themes, we used an iterative coding process. First-order codes were grouped into second-order themes based on the commonality of meanings. Results: The participants identified 10 important guidelines as a preliminary framework for developing notes sensitive to patients’ needs. Conclusions: The process identified 10 discrete themes that can help clinicians use and spread patient-centered documentation. %M 39832175 %R 10.2196/59301 %U https://mededu.jmir.org/2025/1/e59301 %U https://doi.org/10.2196/59301 %U http://www.ncbi.nlm.nih.gov/pubmed/39832175 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 11 %N %P e68046 %T Transforming Medical Education to Make Patient Safety Part of the Genome of a Modern Health Care Worker %A Lachman,Peter %A Fitzsimons,John %K patient safety %K psychological safety %K medical curriculum %K professional competence %K clinical competence %D 2025 %7 17.1.2025 %9 %J JMIR Med Educ %G English %X Medical education has not traditionally recognized patient safety as a core subject. To foster a culture of patient safety and enhance psychological safety, it is essential to address the barriers and facilitators that currently impact the development and delivery of medical education curricula. The aim of including patient safety and psychological safety competencies in education curricula is to insert these into the genome of the modern health care worker. %R 10.2196/68046 %U https://mededu.jmir.org/2025/1/e68046 %U https://doi.org/10.2196/68046 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e59464 %T Developing and Assessing a Scalable Digital Health Tool for Pretest Genetic Education in Patients With Early-Onset Colorectal Cancer: Mixed Methods Design %A Rivera Rivera,Jessica N %A Snir,Moran %A Simmons,Emilie %A Schmidlen,Tara %A Sholeh,Misha %A Maconi,Melinda Leigh %A Geiss,Carley %A Fulton,Hayden %A Barton,Laura %A Gonzalez,Brian D %A Permuth,Jennifer %A Vadaparampil,Susan %+ Healthcare Delivery Research Network, MedStar Health Research Institute, 100 Irving Street NW, Washington, DC, 20010, United States, 1 443 692 1138, jessica.n.riverarivera@medstar.net %K genetic education %K genetic testing %K genetic counseling %K digital health %K early-onset colorectal cancer %D 2025 %7 17.1.2025 %9 Original Paper %J JMIR Cancer %G English %X Background: National guidelines recommend germline genetic testing (GT) for all patients with early-onset colorectal cancer. With recent advances in targeted therapies and GT, these guidelines are expected to expand to include broader groups of patients with colorectal cancer. However, there is a shortage of genetic professionals to provide the necessary education and support for informed consent. As such, there is a pressing need to identify alternative approaches to facilitate and expedite access to GT. Objective: This study describes the development of a pretest education intervention, Nest-CRC, to facilitate the uptake of germline GT among patients with early-onset colorectal cancer. Patients with early-onset colorectal cancer and health care providers reviewed Nest-CRC, and their reactions and recommendations were captured using a nested mixed methods approach. Methods: Using the learner verification approach, we conducted 2 sequential phases of surveys and interviews with English- and Spanish-speaking patients with early-onset colorectal cancer and health care providers. The surveys assessed participants’ experiences with genetic services and provided immediate feedback on the Nest-CRC genetic education modules. Semistructured interviews evaluated participants’ perceptions of self-efficacy, attraction, comprehension, cultural acceptability, and usability of Nest-CRC. Survey data were analyzed using descriptive statistics (mean, median, and proportions), while interview data were analyzed through line-by-line coding of the transcribed interviews. After each phase, Nest-CRC was refined based on participants’ recommendations. Results: A total of 52 participants, including 39 patients with early-onset colorectal cancer and 13 providers, participated in the study. Of these, 19 patients and 6 providers participated in phase 1 (N=25), and 20 patients and 7 providers participated in phase 2 (N=27). Most participants (phase 1: 23/25, 92%, to 25/25, 100%; phase 2: 24/27, 89%, to 27/27, 100%) agreed that each of the 5 education modules was easy to understand and helpful; 13 patients reported no history of GT, with 11 (85%) expressing interest in GT and 2 (15%) remaining unsure after completing Nest-CRC. Participants reported that Nest-CRC provided sufficient information to help them decide about GT. The tool was deemed acceptable by individuals from diverse backgrounds, and participants found it visually attractive, easy to comprehend, and user-friendly. Conclusions: The findings revealed that Nest-CRC is a promising strategy for facilitating pretest education and promoting GT. Nest-CRC has been refined based on participant recommendations and will be re-evaluated. %M 39819811 %R 10.2196/59464 %U https://cancer.jmir.org/2025/1/e59464 %U https://doi.org/10.2196/59464 %U http://www.ncbi.nlm.nih.gov/pubmed/39819811 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 11 %N %P e50060 %T A Brief Web-Based Person-Centered Care Group Training Program for the Management of Generalized Anxiety Disorder: Feasibility Randomized Controlled Trial in Spain %A Ramos-García,Vanesa %A Rivero-Santana,Amado %A Peñate-Castro,Wenceslao %A Álvarez-Pérez,Yolanda %A Duarte-Díaz,Andrea %A Torres-Castaño,Alezandra %A Trujillo-Martín,María del Mar %A González-González,Ana Isabel %A Serrano-Aguilar,Pedro %A Perestelo-Pérez,Lilisbeth %K person-centered care %K primary care %K shared decision-making %K anxiety disorder %K training program %K SDM %D 2025 %7 16.1.2025 %9 %J JMIR Med Educ %G English %X Background: Shared decision-making (SDM) is a crucial aspect of patient-centered care. While several SDM training programs for health care professionals have been developed, evaluation of their effectiveness is scarce, especially in mental health disorders such as generalized anxiety disorder. Objective: This study aims to assess the feasibility and impact of a brief training program on the attitudes toward SDM among primary care professionals who attend to patients with generalized anxiety disorder. Methods: A feasibility randomized controlled trial was conducted. Health care professionals recruited in primary care centers were randomized to an intervention group (training program) or a control group (waiting list). The intervention consisted of 2 web-based sessions applied by 2 psychologists (VR and YA), based on the integrated elements of the patient-centered care model and including group dynamics and video viewing. The outcome variable was the Leeds Attitudes Towards Concordance scale, second version (LATCon II), assessed at baseline and after the second session (3 months). After the randomized controlled trial phase, the control group also received the intervention and was assessed again. Results: Among 28 randomized participants, 5 withdrew before the baseline assessment. The intervention significantly increased their scores compared with the control group in the total scale (b=0.57; P=.018) and 2 subscales: communication or empathy (b=0.74; P=.036) and shared control (ie, patient participation in decisions: b=0.68; P=.040). The control group also showed significant pre-post changes after receiving the intervention. Conclusions: For a future effectiveness trial, it is necessary to improve the recruitment and retention strategies. The program produced a significant improvement in participants’ attitude toward the SDM model, but due to this study’s limitations, mainly the small sample size, more research is warranted. %R 10.2196/50060 %U https://mededu.jmir.org/2025/1/e50060 %U https://doi.org/10.2196/50060 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60512 %T Digital Age Transformation in Patient-Physician Communication: 25-Year Narrative Review (1999-2023) %A Song,Mingming %A Elson,Joel %A Bastola,Dhundy %+ University of Nebraska at Omaha, 1110 S 67th Street, Omaha, NE, 68182, United States, 1 4025544899, dkbastola@unomaha.edu %K health communication %K health IT %K patient empowerment %K shared decision-making %K patient-physician relationship %K trust %D 2025 %7 16.1.2025 %9 Review %J J Med Internet Res %G English %X 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. %M 39819592 %R 10.2196/60512 %U https://www.jmir.org/2025/1/e60512 %U https://doi.org/10.2196/60512 %U http://www.ncbi.nlm.nih.gov/pubmed/39819592 %0 Journal Article %@ 2564-1891 %I JMIR Publications %V 5 %N %P e59625 %T How Patients With Cancer Use the Internet to Search for Health Information: Scenario-Based Think-Aloud Study %A Huijgens,Fiorella %A Kwakman,Pascale %A Hillen,Marij %A van Weert,Julia %A Jaspers,Monique %A Smets,Ellen %A Linn,Annemiek %+ Department of Medical Psychology, Amsterdam University Medical Centers, location Academic Medical Center, University of Amsterdam, Meibergdreef 9, Amsterdam, 1105 AZ, Netherlands, 31 623715595, f.l.huijgens@amsterdamumc.nl %K web-based health information seeking %K think aloud %K scenario based %K cancer %K patient evaluation %K information seeking %K web-based information %K health information %K internet %K pattern %K motivation %K cognitive %K emotional %K response %K patient %K survivor %K caregiver %K interview %K scenario %K women %K men %D 2025 %7 16.1.2025 %9 Original Paper %J JMIR Infodemiology %G English %X 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. %M 39819829 %R 10.2196/59625 %U https://infodemiology.jmir.org/2025/1/e59625 %U https://doi.org/10.2196/59625 %U http://www.ncbi.nlm.nih.gov/pubmed/39819829 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e60447 %T Healthy Kai (Food) Checker Web-Based Tool to Support Healthy Food Policy Implementation: Development and Usability Study %A Rosin,Magda %A Ni Mhurchu,Cliona %A Umali,Elaine %A Mackay,Sally %+ Department of Epidemiology and Biostatistics, School of Population Health, Faculty of Medical and Health Sciences, University of Auckland, Building 507, 22-30 Park Ave, Grafton, Auckland, 1023, New Zealand, 64 093737599 ext 88733, m.rosin@auckland.ac.nz %K healthy food policy %K policy implementation %K nutrition %K food environment %K hospital %K workplace %K web-based tool %K digital tool %K database %K user testing %K food %K drink %K nutrition professionals %K acceptability %K usability %D 2025 %7 13.1.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Public health programs and policies can positively influence food environments. In 2016, a voluntary National Healthy Food and Drink Policy was released in New Zealand to improve the healthiness of food and drinks for hospital staff and visitors. However, no resources were developed to support policy implementation. Objective: This study aimed to design, develop, and test a new web-based tool to support food providers implementing the National Healthy Food and Drink Policy in New Zealand. Methods: The Double Diamond model, a structured framework with 4 design phases, was used to design and develop a web-based tool. Findings from our previous research, such as (1) systematic review of barriers and facilitators to workplace healthy food policy implementation; (2) scoping review of current tools and resources available in New Zealand, Australia, and Canada; (3) interviews with food providers and public health nutrition professionals; and (4) food and drink availability audit results in New Zealand hospitals were used in the “Discover” (understanding of current gaps) and “Define” (prioritizing functions and features) phases. Subsequent phases focused on generating ideas, creating prototypes, and testing a new web-based tool using Figma, a prototyping tool. During the “Develop” phase, project stakeholders (11 public health nutrition professionals) provided feedback on the basic content outline of the initial low-fidelity prototype. In the final “Deliver” phase, a high-fidelity prototype resembling the appearance and functionality of the final tool was tested with 3 end users (public health nutrition professionals) through interactive interviews, and user suggestions were incorporated to improve the tool. Results: A new digital tool, Healthy Kai (Food) Checker—a searchable database of packaged food and drink products that classifies items according to the Policy’s nutritional criteria—was identified as a key tool to support Policy implementation. Of 18 potential functions and features, 11 were prioritized by the study team, including basic and advanced searches for products, sorting list options, the ability to compile a list of selected products, a means to report products missing from the database, and ability to use on different devices. Feedback from interview participants was that the tool was easy to use, was logical to navigate, and had an appealing color scheme. Suggested visual and usability improvements included ensuring that images represented the diverse New Zealand population, reducing unnecessary clickable elements, adding information about the free registration option, and including more frequently asked questions. Conclusions: Comprehensive research informed the development of a new digital tool to support implementation of the National Healthy Food and Drink Policy. Testing with end users identified features that would further enhance the tool’s acceptability and usability. Incorporation of more functions and extending the database to include products classified according to the healthy school lunches program policy in the same database would increase the tool’s utility. %M 39805585 %R 10.2196/60447 %U https://formative.jmir.org/2025/1/e60447 %U https://doi.org/10.2196/60447 %U http://www.ncbi.nlm.nih.gov/pubmed/39805585 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60443 %T The Paradigm Shift From Patient to Health Consumer: 20 Years of Value Assessment in Health %A van den Broek-Altenburg,Eline M %A Atherly,Adam J %+ University of Vermont, 111 Colchester Avenue, Burlington, VT, 05401, United States, 1 8026562722, eline.altenburg@med.uvm.edu %K value assessment %K cost-effectiveness %K quality-adjusted life-years %K QALY %K health consumer %K health technology %K value based %K digital health %K patient centered %K preferences %K health economics %D 2025 %7 10.1.2025 %9 Viewpoint %J J Med Internet Res %G English %X Health care is undergoing a “revolution,” where patients are becoming consumers and armed with apps, consumer review scores, and, in some countries, high out-of-pocket costs. Although economic analyses and health technology assessment (HTA) have come a long way in their evaluation of the clinical, economic, ethical, legal, and societal perspectives that may be impacted by new technologies and procedures, these approaches do not reflect underlying patient preferences that may be important in the assessment of “value” in the current value-based health care transition. The major challenges that come with the transformation to a value-based health care system lead to questions such as “How are economic analyses, often the basis for policy and reimbursement decisions, going to switch from a societal to an individual perspective?” and “How do we then assess (economic) value, considering individual preference heterogeneity, as well as varying heuristics and decision rules?” These challenges, related to including the individual perspective in cost-effectiveness analysis (CEA), have been widely debated. Cost-effectiveness measures treatments in terms of costs and quality-adjusted life-years (QALYs), where QALYs assume that a health state that is more desirable is more valuable, and therefore, value is equated with preference or desirability. QALYs have long been criticized for empirical and conceptual shortcomings. However, policy makers in many countries have used QALY measures to make health coverage decisions, although now, patients, and patient advocates, are questioning the valuation methodologies. This has led to the development of new approaches to valuing health, which are already starting to be used in the United States. This paper reviews 20-25 years of value assessment approaches in health and concludes with challenges and opportunities for value assessment methods in health in the years to come. %M 39793021 %R 10.2196/60443 %U https://www.jmir.org/2025/1/e60443 %U https://doi.org/10.2196/60443 %U http://www.ncbi.nlm.nih.gov/pubmed/39793021 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e55746 %T Exploring Motives Behind Ideal Melanoma Survivorship Care Plans With Multiple Stakeholders: A Cocreation Study %A Kamminga,Nadia Christina Willemina %A Lugtenberg,Marjolein %A Van den Broek,Julia Annabel %A Nijsten,Tamar %A Wakkee,Marlies %A Tabeau,Kasia %+ Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Burgemeester Oudlaan 50, Rotterdam, 3062 PA, Netherlands, 31 10 408 8555, tabeau@eshpm.eur.nl %K cocreation %K survivorship care %K psycho-oncology %K supportive care %K motives %K melanoma %K cancer survivor %K melanoma care %D 2025 %7 2.1.2025 %9 Original Paper %J JMIR Cancer %G English %X 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. %M 39746197 %R 10.2196/55746 %U https://cancer.jmir.org/2025/1/e55746 %U https://doi.org/10.2196/55746 %U http://www.ncbi.nlm.nih.gov/pubmed/39746197 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e53205 %T Association Between Digital Front Doors and Social Care Use for Community-Dwelling Adults in England: Cross-Sectional Study %A Zhang,Jinbao %A Prunty,Jonathan E %A Charles,Alison C %A Forder,Julien %+ Personal Social Services Research Unit, University of Kent, Cornwallis Central, Giles Ln, Canterbury, CT2 7NF, United Kingdom, 44 01227 823862, j.zhang@kent.ac.uk %K social care support %K long term care %K access %K front door %K easy-read %K self-assessment %K system navigation %K digital system %K digital technology %K internet %D 2025 %7 2.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Requests for public social care support can be made through an online portal. These digital “front doors” can help people navigate complex social care systems and access services. These systems can be set up in different ways, but there is little evidence about the impact of alternative arrangements. Digital front-door systems should help people better access services, particularly low-intensity services (high-intensity care is likely to require a full in-person assessment). Objective: This study aimed to investigate the association between 2 primary digital front door arrangements, easy-read information, and self-assessment tools provided on official websites, and the type of social care support that is offered: ongoing low-level support (OLLS), short-term care (STC) and long-term care (LTC). Methods: Information on front door arrangements was collected from the official websites of 152 English local authorities in 2021. We conducted a cross-sectional analysis using aggregated service use data from official government returns at the local authority level. The independent variables were derived from the policy information collected, specifically focusing on the availability of online digital easy-read information and self-assessment tools for adults and caregivers through official websites. The dependent variables were the rates of using social care support, including OLLS, STC, and LTC, across different age groups: the adult population (aged 18 and older), younger population (aged between 18 and 64 years), and older population (aged 65 and older). Multivariate regression analysis was used to examine the association between digital front door arrangements and access to social care support, controlling for population size, dependency level, and financial need factors. Results: Less than 20% (27/147) of local authorities provided an integrated digital easy-read format as part of their digital front door system with about 25% (37/147) adopting digital self-assessment within their system. We found that local authorities that offered an integrated digital easy-read information format showed higher rates of using OLLS (β coefficient=0.54; P=.03; but no statistically significant association with LTC and STC). The provision of an online self-assessment system was not associated with service use in the 1-year (2021) cross-sectional estimate, but when 2 years (2020 and 2021) of service-use data were analyzed, a significant positive association was found on OLLS rates (β coefficient=0.41; P=.21). Notably, these findings were consistent across different age groups. Conclusions: These findings are consistent with our hypothesis that digital systems with built-in easy-read and self-assessment may make access to (low-intensity) services easier for people. Adoption of these arrangements could potentially help increase the uptake of support among those who are eligible, with expected benefits for their care-related well-being. Given the limited adoption of the digital front door by local authorities in England, expanding their use could improve care-related outcomes and save social care costs. %M 39746193 %R 10.2196/53205 %U https://www.jmir.org/2025/1/e53205 %U https://doi.org/10.2196/53205 %U http://www.ncbi.nlm.nih.gov/pubmed/39746193 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e58306 %T The Effectiveness of Video Animations as a Tool to Improve Health Information Recall for Patients: Systematic Review %A Hansen,Steffen %A Jensen,Tue Secher %A Schmidt,Anne Mette %A Strøm,Janni %A Vistisen,Peter %A Høybye,Mette Terp %+ University Clinic for Interdisciplinary Orthopedic Pathways (UCOP), Elective Surgery Center, Silkeborg Regional Hospital, Falkevej 1-3, Silkeborg, 8600, Denmark, 45 61106066, hoybye@clin.au.dk %K public health %K health information %K patient information %K animation video %K digital health %K visualization %K memory %K recall %K education %K synthesis %K review methods %K review methodology %K systematic %K PRISMA %D 2024 %7 30.12.2024 %9 Review %J J Med Internet Res %G English %X Background: Access to clear and comprehensible health information is crucial for patient empowerment, leading to improved self-care, adherence to treatment plans, and overall health outcomes. Traditional methods of information delivery, such as written documents and oral communication, often result in poor memorization and comprehension. Recent innovations, such as animation videos, have shown promise in enhancing patient understanding, but comprehensive investigations into their effectiveness across various health care settings are lacking. Objective: This systematic review aims to investigate the effectiveness of animation videos on health information recall in adult patients across diverse health care sectors, comparing their impact to usual information delivery methods on short-term and long-term recall of health information. Methods: We conducted systematic searches in PubMed, CINAHL, and Embase databases, supplemented by manual searches of reference lists. Included studies were randomized controlled trials involving adult participants (≥18 years) that focused on the use of animation videos to provide health information measured against usual information delivery practice. There were no language restrictions. Out of 2 independent reviewers screened studies, extracted data, and assessed the risk of bias using the Revised Cochrane risk-of-bias tool for randomized trials (RoB2), Covidence was used to handle screening and risk of bias process. A narrative synthesis approach was applied to present results. Results: A total of 15 randomized controlled trials—3 in the United States, 2 in France, 2 in Australia, 2 in Canada, and 1 in the United Kingdom, Japan, Singapore, Brazil, Austria, and Türkiye, respectively—met the inclusion criteria, encompassing 2,454 patients across various health care settings. The majority of studies (11/15, 73%) reported statistically significant improvements in health information recall when animation videos were used, compared with usual care. Animation videos ranged from 1 to 15 minutes in duration with the most common length ranging from 1 to 8 minutes (10/15) and used various styles including 2D cartoons, 3D computers, and whiteboard animations. Most studies (12/15) assessed information recall immediately after intervention, with only 3 studies including longer follow-up periods. Most studies exhibited some concerns related to the risk of bias, particularly in domains related to deviations from intended interventions and selection of reported results. Conclusions: Animation videos appear to significantly improve short-term recall of health information among adult patients across various health care settings compared with usual care. This suggests that animation videos could be a valuable tool for informing patients in different health care settings. However, further research is needed to explore the long-term efficacy of these interventions, their impact on diverse populations, and how different animation styles might affect information recall. Future studies should also address methodological limitations identified in current research, including the use of validated outcome measures and longer follow-up periods. Trial Registration: PROSPERO CRD42022380016; http://crd.york.ac.uk/prospero/display_record.php?RecordID=380016 %M 39753224 %R 10.2196/58306 %U https://www.jmir.org/2024/1/e58306 %U https://doi.org/10.2196/58306 %U http://www.ncbi.nlm.nih.gov/pubmed/39753224 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55753 %T Platform-Based Patient-Clinician Digital Health Interventions for Care Transitions: Scoping Review %A Backman,Chantal %A Papp,Rosie %A Tonjock Kolle,Aurelie %A Papp,Steve %A Visintini,Sarah %A Schaefer Ferreira de Mello,Ana Lúcia %A de Melo Lanzoni,Gabriela Marcellino %A Harley,Anne %+ University of Ottawa, 200 Lees Ave, Ottawa, ON, K1N 6N5, Canada, 1 6133240838, chantal.backman@uottawa.ca %K platform based %K patient-clinician %K digital health intervention %K care transition %K mobile phone %D 2024 %7 30.12.2024 %9 Review %J J Med Internet Res %G English %X Background: Care transitions are complex and can make patients vulnerable to adverse events. Poor communication among clinicians, patients, and their caregivers is a critical gap during these periods of transition. Technology solutions such as platform-based patient-clinician digital health interventions (DHIs) can provide support and education to patients. Objective: The aims of this scoping review were to explore the literature on platform-based patient-clinician DHIs specific to hospital-to-home care transitions and identify the barriers to and enablers of the uptake and implementation of these DHIs. Methods: A scoping review was conducted. A total of 4 databases (MEDLINE, CINAHL, Embase, and the Cochrane Central Register of Controlled Trials) were searched on July 13, 2022. Studies involving patients aged >18 years who used platform-based DHIs during their hospital-to-home transition were included. In total, 2 reviewers independently screened the articles for eligibility using a 2-stage process of title and abstract and full-text screening. Eligible studies underwent data extraction, and the results were analyzed using descriptive and narrative methods. Results: We screened 8322 articles, of which 97 (1.17%) met our inclusion criteria. DHIs were implemented using a mobile app (59/97, 61%), a web-based platform (28/97, 29%), or a combination of both (10/97, 10%). The 2 most common health conditions related to the DHIs were cardiac disease (22/97, 23%) and stroke (11/97, 11%). Outcomes varied greatly but were grouped by health care use, complications, and wellness outcomes. The top 2 barriers were lack of interest (13/97, 13%) and time constraints to use the DHIs (10/97, 10%), and the top 2 enablers were the ability to use the DHIs (17/97, 18%) and their ease of use (11/97, 11%). The main conflicting theme was access (enabler; 28/97, 29%) or limited access (barrier; 15/97, 15%) to technology or the internet. Conclusions: Platform-based DHIs could help improve communication, coordination, and information sharing between clinicians and patients during transition periods. Further research is needed to assess the effectiveness of these platform-based DHIs on patient outcomes. %M 39753212 %R 10.2196/55753 %U https://www.jmir.org/2024/1/e55753 %U https://doi.org/10.2196/55753 %U http://www.ncbi.nlm.nih.gov/pubmed/39753212 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e57833 %T Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases %A Doyle,Tom A %A Vershaw,Samantha L %A Conboy,Erin %A Halverson,Colin M E %+ Center for Bioethics, Indiana University School of Medicine, 410 W. 10th Street, Suite 3100, Indianapolis, IN, 46202, United States, 1 (317) 278 4052, doylet@iu.edu %K social media %K rare disease %K support groups %K pediatric rare disease %K Ehlers-Danlos syndrome %K collagen disease %K fibrillar collagen %K cutis elastica %K connective tissue disorders %K hyperelasticity %K hypermobility of joints, inherited %K genetic disorder %K genetics %K pediatric %D 2024 %7 30.12.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs. Objective: This study aimed to identify what specific features of disease-related support groups (DRSGs) the RD community finds particularly useful or supportive and provide a set of recommendations to improve social media–based RD support groups based on this information. Methods: Semistructured qualitative interviews were performed with patients and parents of patients with RDs. Interview participants had to be at least 18 years of age at the time of the interview, be seen by a genetics specialist at a partner health care institution and be proficient in the English language. Social media use was not a prerequisite for participation, so interview participants ranged from extensive users of social media to those who chose to remain off all social media. All interviews were conducted by phone, recorded, and then transcribed. Interview transcripts were then coded using the 6 steps outlined by Braun and Clarke. Three researchers (TAD, SLV, and CMEH) performed initial coding. After this, the study team conducted a review of themes and all members of the team agreed upon a final analysis and presentation of data. Results: We conducted 31 interviews (mean age 40, SD 10.04 years; n=27, 87% were women; n=30, 97% were non-Hispanic White). Thematic analysis revealed that social media DRSG users identified the informational usefulness of these groups as being related to the gathering and sharing of specific information about an RD, clarification about the importance and meaning of certain symptoms, and obtaining insight into an RD’s progression and prognosis. Participants also identified that DRSGs were useful sources of practical information, such as tips and tricks about managing RD-related issues and concerns. In addition, participants found DRSGs to be a useful space for sharing their disease-related stories but also highlighted a feeling of exhaustion from overexposure and overuse of DRSGs. Conclusions: This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD-related information unhelpfully dispersed amongst a multitude of support groups. %M 39752188 %R 10.2196/57833 %U https://humanfactors.jmir.org/2024/1/e57833 %U https://doi.org/10.2196/57833 %U http://www.ncbi.nlm.nih.gov/pubmed/39752188 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e55300 %T Evaluating Online Cannabis Health Information for Thai Breast Cancer Survivors Using the Quality Evaluation Scoring Tool (QUEST): Mixed Method Study %A Peerawong,Thanarpan %A Phenwan,Tharin %A Makita,Meiko %A Supanichwatana,Sojirat %A Puttarak,Panupong %A Siammai,Naowanit %A Sunthorn,Prakaidao %K cannabis %K medical cannabis %K Thailand %K critical discourse analysis %K mixed method study %K breast cancer %K digital literacy %K legislation %K health literacy %D 2024 %7 24.12.2024 %9 %J JMIR Cancer %G English %X Background: Following medical cannabis legalization in Thailand in 2019, more people are seeking medical cannabis–related information, including women living with breast cancer. The extent to which they access cannabis-related information from internet sources and social media platforms and the quality of such content are relatively unknown and need further evaluation. Objective: This study aims to analyze the factors determining cannabis-related content quality for breast cancer care from internet sources and on social media platforms and examine the characteristics of such content accessed and consumed by Thai breast cancer survivors. Methods: A mixed methods study was conducted between January 2021 and May 2022, involving a breast cancer survivor support group. The group identified medical cannabis–related content from frequently accessed internet sources and social media platforms. The contents were categorized based on content creators, platforms, content category, and upload dates. Four researchers used the Quality Evaluation Scoring Tool (QUEST) to assess content quality, with scores ranging from 0 to 28. Contents were expert-rated as either high or poor. The QUEST interobserver reliability was analyzed. Receiver-operating characteristic curve analysis with the Youden index was used to determine the QUEST score cut-off point. Statistical significance was set at P<.05. Fairclough Critical Discourse Analysis was undertaken to examine the underlying discourses around poor-quality content. Results: Sixty-two Thai-language cannabis-related items were evaluated. The content sources were categorized as follows: news channels (21/62, 34%), government sources (16/62, 26%), health care providers (12/62, 19%), and alternative medicine providers (12/62, 19%). Most of the contents (30/62, 48%) were uploaded to YouTube, whereas 31% (19/62) appeared on websites and Facebook. Forty of 62 content items (64%) were news-related and generic cannabis advertisements while 8 of 62 (13%) content items had no identifiable date. The interobserver QUEST score correlation was 0.86 (P<.001). The mean QUEST score was 12.1 (SD 7.6). Contents were considered “high” when the expert rating was >3. With a QUEST score of 15 as the threshold, the sensitivity and specificity for differentiating between high and poor content quality were 81% and 98%, respectively. Content creation was the only significant factor between high- and poor-quality content. Poor-quality contents were primarily created by alternative medicine providers and news channels. Two discourses were identified: advocacy for cannabis use normalization and cannabis romanticization as a panacea. These discourses overly normalize and romanticize the use of cannabis, focusing on indications and instructions for cannabis use, and medical cannabis promotion, while neglecting discussions on cannabis contraindications and potential side effects. Conclusions: The varying quality of medical cannabis–related information on internet sources and social media platforms accessed and shared by Thai breast cancer survivors is an issue of concern. Given that content creators are the sole predictive factors of high content quality, future studies should examine a wider range of cannabis-related sources accessible to both the public and patients to gain a more comprehensive understanding of the issue. %R 10.2196/55300 %U https://cancer.jmir.org/2024/1/e55300 %U https://doi.org/10.2196/55300 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e63334 %T Optimization of a Web-Based Self-Assessment Tool for Preconception Health in People of Reproductive Age in Australia: User Feedback and User-Experience Testing Study %A Dorney,Edwina %A Hammarberg,Karin %A Rodgers,Raymond %A Black,Kirsten I %K technology %K internet %K eHealth %K user experience %K patient engagement %K self-assessment tool %K preconception %K health communication %D 2024 %7 24.12.2024 %9 %J JMIR Hum Factors %G English %X Background: Good preconception health reduces the incidence of preventable morbidity and mortality for women, their babies, and future generations. In Australia, there is a need to increase health literacy and awareness about the importance of good preconception health. Digital health tools are a possible enabler to increase this awareness at a population level. The Healthy Conception Tool (HCT) is an existing web-based, preconception health self-assessment tool, that has been developed by academics and clinicians. Objective: This study aims to optimize the HCT and to seek user feedback to increase the engagement and impact of the tool. Methods: In-depth interviews were held with women and men aged 18‐41 years, who spoke and read English and were residing in Australia. Interview transcripts were analyzed, and findings were used to inform an enhanced HCT prototype. This prototype underwent user-experience testing and feedback from users to inform a final round of design changes to the tool. Results: A total of 20 women and 5 men were interviewed; all wanted a tool that was quick and easy to use with personalized results. Almost all participants were unfamiliar with the term “preconception care” and stated they would not have found this tool on the internet with its current title. User-experience testing with 6 women and 5 men identified 11 usability issues. These informed further changes to the tool’s title, the information on how to use the tool, and the presentation of results. Conclusions: Web-based self-assessment tools need to be easy to find and should communicate health messages effectively. End users’ feedback informed changes to improve the tool’s acceptability, engagement, and impact. We expect that the revised tool will have greater reach and prompt more people to prepare well for pregnancy. %R 10.2196/63334 %U https://humanfactors.jmir.org/2024/1/e63334 %U https://doi.org/10.2196/63334 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 7 %N %P e57308 %T An Evidence-Based IT Program With Chatbot to Support Caregiving and Clinical Care for People With Dementia: The CareHeroes Development and Usability Pilot %A Ruggiano,Nicole %A Brown,Ellen Leslie %A Clarke,Peter J %A Hristidis,Vagelis %A Roberts,Lisa %A Framil Suarez,Carmen Victoria %A Allala,Sai Chaithra %A Hurley,Shannon %A Kopcsik,Chrystine %A Daquin,Jane %A Chevez,Hamilton %A Chang-Lau,Raymond %A Agronin,Marc %A Geldmacher,David S %K Alzheimer disease %K artificial intelligence %K caregivers %K chatbot %K dementia %K mobile applications %K conversational agent %K design %K apps %D 2024 %7 23.12.2024 %9 %J JMIR Aging %G English %X Background: There are numerous communication barriers between family caregivers and providers of people living with dementia, which can pose challenges to caregiving and clinical decision-making. To address these barriers, a new web and mobile-enabled app, called CareHeroes, was developed, which promotes the collection and secured sharing of clinical information between caregivers and providers. It also provides caregiver support and education. Objective: The primary study objective was to examine whether dementia caregivers would use CareHeroes as an adjunct to care and gather psychosocial data from those who used the app. Methods: This paper presents the implementation process used to integrate CareHeroes into clinical care at 2 memory clinics and preliminary outcome evaluation. Family caregivers receiving services at clinics were asked to use the app for a 12-month period to collect, track, and share clinical information with the care recipient’s provider. They also used it to assess their own mental health symptoms. Psychosocial outcomes were assessed through telephone interviews and user data were collected by the app. Results: A total of 21 caregivers enrolled in the pilot study across the 2 memory clinics. Usage data indicated that caregivers used many of the features in the CareHeroes app, though the chatbot was the most frequently used feature. Outcome data indicated that caregivers’ depression was lower at 3-month follow-up (t11=2.03, P=.03). Conclusions: Recruitment and retention of the pilot study were impacted by COVID-19 restrictions, and therefore more testing is needed with a larger sample to determine the potential impact of CareHeroes on caregivers’ mental health. Despite this limitation, the pilot study demonstrated that integrating a new supportive app for caregivers as an adjunct to clinical dementia care is feasible. Implications for future technology intervention development, implementation planning, and testing for caregivers of people living with dementia are discussed. %R 10.2196/57308 %U https://aging.jmir.org/2024/1/e57308 %U https://doi.org/10.2196/57308 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e52651 %T Promoting Comprehensive Sexuality Education in Pakistan Using a Cocreated Social Media Intervention: Development and Pilot Testing Study %A Ahmed,Furqan %A Ahmad,Ghufran %A Eisinger,Katharina %A Khan,Muhammad Asad %A Brand,Tilman %+ Department of Prevention and Evaluation, Leibniz Institute of Prevention Research and Epidemiology-BIPS, Achterstraße 30, Bremen, 28359, Germany, 49 (0)421 21856913, ahmedf@leibniz-bips.de %K digital health interventions %K sexuality education %K social media %K influencer marketing %K community readiness %D 2024 %7 20.12.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Comprehensive sexuality education (CSE) is a curriculum-based approach to learning and teaching about sexuality that focuses on the cognitive, emotional, physical, and social domains. The United Nations Educational, Scientific, and Cultural Organization (UNESCO) CSE guideline emphasizes gender issues and is firmly rooted in a human rights–based approach to sexuality. A recent cross-sectional community readiness assessment in Islamabad, Pakistan, found that the community is at the denial or resistant stage when it comes to implementing school-based sexuality education. The reluctance was attributed to a lack of understanding and widespread misconceptions about CSE. Objective: This study aims to use the cocreation process to develop, pilot, and evaluate an intervention based on community readiness level to respond to community resistance by introducing CSE content, its anticipated benefits, and addressing prevalent misconceptions through awareness and promotion content for digital social media platforms. Methods: For the development of the intervention (audio-video content), focus group discussion sessions with key stakeholders were held. Two videos were created in partnership with social media influencers and subsequently shared on Facebook, YouTube, and Instagram. A comprehensive process and performance evaluation of the videos and intervention development phase was conducted to evaluate audience exposure, reach, engagement, demographics, retention, and in-depth insights. The videos were uploaded to social media platforms in June and July 2021, and the data used to assess their performance was obtained in February 2022. Results: With a total reach (number of people who have contact with the videos) of 432,457 and 735,563 for the first and second videos, respectively, on all social media platforms, we concluded that social media platforms provide an opportunity to communicate, promote, and engage with important stakeholders to raise awareness and obtain support for CSE. According to the findings, the public is responsive to CSE promotion content developed for social media platforms, with a total engagement (the number of people who participate in creating, sharing, and using the content) of 11,578. The findings revealed that male viewers predominated across all social media platforms. Punjab province had the largest audience share on Instagram (51.9% for the first video, 52.7% for the second) and Facebook (44.3% for the first video and 48.4% for the second). YouTube had the highest audience retention, with viewers watching an average of 151 seconds (45%) of the first video and 163 seconds (38%) of the second. With a net sentiment score of 0.83 (minimum=−3, maximum=5), end-user participation was also positive, and audience feedback highlighted the reasons for positive and negative criticism. Conclusions: To promote sexuality education in Pakistan, it is vital to overcome opposition through sensitizing the society, and digital social media platforms offer a unique, though underused, chance to do so through reliable influencer marketing. %M 39705696 %R 10.2196/52651 %U https://formative.jmir.org/2024/1/e52651 %U https://doi.org/10.2196/52651 %U http://www.ncbi.nlm.nih.gov/pubmed/39705696 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 16 %N %P e57528 %T From English to “Englishes”: A Process Perspective on Enhancing the Linguistic Responsiveness of Culturally Tailored Cancer Prevention Interventions %A Davis,Alexis %A Martin,Joshua %A Cooks,Eric %A Vilaro,Melissa %A Wilson-Howard,Danyell %A Tang,Kevin %A Raup Krieger,Janice %+ Mayo Clinic, 4500 San Pablo Road, Jacksonville, FL, 32224, United States, 1 614404681, krieger.janice@mayo.edu %K behavior change %K community-engaged research %K cancer screening %K colorectal cancers %K communication %K communication accommodation %K linguistics %D 2024 %7 19.12.2024 %9 Viewpoint %J J Particip Med %G English %X Linguistic accommodation refers to the process of adjusting one’s language, speech, or communication style to match or adapt to that of others in a social interaction. It is known to be vital to effective health communication. Despite this evidence, there is little scientific guidance on how to design linguistically adapted health behavior interventions for diverse English-speaking populations. This study aims to document the strategies used to develop a culturally grounded cancer prevention intervention with the capabilities to linguistically accommodate to speakers of African American English (AAE). We describe the iterative process of developing a cancer prevention intervention with contributions of racially and linguistically diverse colleagues representing various community and institutional perspectives, including communication scientists, linguists, a community advisory board, professional voice talents, and institutional representatives for scientific integrity. We offer a detailed description of the successes and, in some cases, failures of strategies. Social stereotypes associated with AAE were prevalent at both institutional and community levels, resulting in unanticipated challenges and delays during intervention development. The diversity of linguistic, racial, and role identities within the message development team was integral to successfully addressing and identifying opportunities for process improvement. Language is a vital but often overlooked aspect of intervention development. Message designers should consider implicit social stereotypes that unintentionally shape linguistic choices. This study provides a novel overview of how various types of expertise and iterative message development processes contribute to successfully navigating cultural grounding when sensitive or stigmatized issues are salient. %M 39700494 %R 10.2196/57528 %U https://jopm.jmir.org/2024/1/e57528 %U https://doi.org/10.2196/57528 %U http://www.ncbi.nlm.nih.gov/pubmed/39700494 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 7 %N %P e60117 %T Development and Usability of an Advance Care Planning Website (My Voice) to Empower Patients With Heart Failure and Their Caregivers: Mixed Methods Study %A Malhotra,Chetna %A Yee,Alethea %A Ramakrishnan,Chandrika %A Kaurani,Sanam Naraindas %A Chua,Ivy %A Lakin,Joshua R %A Sim,David %A Balakrishnan,Iswaree %A Ling,Vera Goh Jin %A Weiliang,Huang %A Ling,Lee Fong %A Pollak,Kathryn I %K advance care planning %K decision aid %K heart %K website %K heart failure %K care plan %K caregiver %K usability %K acceptability %D 2024 %7 18.12.2024 %9 %J JMIR Aging %G English %X 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 %R 10.2196/60117 %U https://aging.jmir.org/2024/1/e60117 %U https://doi.org/10.2196/60117 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e63155 %T Heuristics Identified in Health Data–Sharing Preferences of Patients With Cancer: Qualitative Focus Group Study %A Hermansen,Anna %A Pollard,Samantha %A McGrail,Kimberlyn %A Bansback,Nick %A Regier,Dean A %+ BC Cancer Research Institute, 675 W 10th Ave, Vancouver, BC, V5Z 1L3, Canada, 1 (604) 822 2772, ajhermansen@gmail.com %K heuristics %K health data sharing %K cancer patients %K decision-making %K real-world data %K altruism %K trust %K control %K data sharing %K focus group %K precision medicine %K clinical data %K exploratory study %K qualitative %K Canada %K thematic analysis %K informed consent %K patient education %K information technology %K healthcare %K medical informatics %D 2024 %7 17.12.2024 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 39689309 %R 10.2196/63155 %U https://www.jmir.org/2024/1/e63155 %U https://doi.org/10.2196/63155 %U http://www.ncbi.nlm.nih.gov/pubmed/39689309 %0 Journal Article %@ 2564-1891 %I JMIR Publications %V 4 %N %P e64577 %T Changes in Reproductive Health Information-Seeking Behaviors After the Dobbs Decision: Systematic Search of the Wikimedia Database %A Lemieux,Mackenzie %A Zhou,Cyrus %A Cary,Caroline %A Kelly,Jeannie %+ Department of Obstetrics and Gynecology, Washington University School of Medicine in St. Louis, 660 S. Euclid Ave St. Louis, MO 63110, St Louis, MO, 63110-1010, United States, 1 (314) 362 7080, l.mackenzie@wustl.edu %K abortion %K Dobbs %K internet %K viewer trends %K Wikipedia %K women’s health %K contraception %K contraceptive %K trend %K information seeking %K page view %K reproductive %K reproduction %D 2024 %7 16.12.2024 %9 Original Paper %J JMIR Infodemiology %G English %X Background: After the US Supreme Court overturned Roe v. Wade, confusion followed regarding the legality of abortion in different states across the country. Recent studies found increased Google searches for abortion-related terms in restricted states after the Dobbsv. Jackson Women’s Health Organization decision was leaked. As patients and providers use Wikipedia (Wikimedia Foundation) as a predominant medical information source, we hypothesized that changes in reproductive health information-seeking behavior could be better understood by examining Wikipedia article traffic. Objective: This study aimed to examine trends in Wikipedia usage for abortion and contraception information before and after the Dobbs decision. Methods: Page views of abortion- and contraception-related Wikipedia pages were scraped. Temporal changes in page views before and after the Dobbs decision were then analyzed to explore changes in baseline views, differences in views for abortion-related information in states with restrictive abortion laws versus nonrestrictive states, and viewer trends on contraception-related pages. Results: Wikipedia articles related to abortion topics had significantly increased page views following the leaked and final Dobbs decision. There was a 103-fold increase in the page views for the Wikipedia article Roe v. Wade following the Dobbs decision leak (mean 372,654, SD 135,478 vs mean 3614, SD 248; P<.001) and a 67-fold increase in page views following the release of the final Dobbs decision (mean 8942, SD 402 vs mean 595,871, SD 178,649; P<.001). Articles about abortion in the most restrictive states had a greater increase in page views (mean 40.6, SD 12.7; 18/51, 35% states) than articles about abortion in states with some restrictions or protections (mean 26.8, SD 7.3; 24/51, 47% states; P<.001) and in the most protective states (mean 20.6, SD 5.7; 8/51, 16% states; P<.001). Finally, views to pages about common contraceptive methods significantly increased after the Dobbs decision. “Vasectomy” page views increased by 183% (P<.001), “IUD” (intrauterine device) page views increased by 80% (P<.001), “Combined oral contraceptive pill” page views increased by 24% (P<.001), “Emergency Contraception” page views increased by 224% (P<.001), and “Tubal ligation” page views increased by 92% (P<.001). Conclusions: People sought information on Wikipedia about abortion and contraception at increased rates after the Dobbs decision. Increased traffic to abortion-related Wikipedia articles correlated to the restrictiveness of state abortion policies. Increased interest in contraception-related pages reflects the increased demand for contraceptives observed after the Dobbs decision. Our work positions Wikipedia as an important source of reproductive health information and demands increased attention to maintain and improve Wikipedia as a reliable source of health information after the Dobbs decision. %M 39680890 %R 10.2196/64577 %U https://infodemiology.jmir.org/2024/1/e64577 %U https://doi.org/10.2196/64577 %U http://www.ncbi.nlm.nih.gov/pubmed/39680890 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 11 %N %P e59785 %T Integrating Patient-Generated Digital Data Into Mental Health Therapy: Mixed Methods Analysis of User Experience %A Southwick,Lauren %A Sharma,Meghana %A Rai,Sunny %A Beidas,Rinad S %A Mandell,David S %A Asch,David A %A Curtis,Brenda %A Guntuku,Sharath Chandra %A Merchant,Raina M %K digital data %K social media %K psychotherapy %K latent Dirichlet allocation %K LDA %K mobile phone %D 2024 %7 16.12.2024 %9 %J JMIR Ment Health %G English %X Background: Therapists and their patients increasingly discuss digital data from social media, smartphone sensors, and other online engagements within the context of psychotherapy. Objective: We examined patients’ and mental health therapists’ experiences and perceptions following a randomized controlled trial in which they both received regular summaries of patients’ digital data (eg, dashboard) to review and discuss in session. The dashboard included data that patients consented to share from their social media posts, phone usage, and online searches. Methods: Following the randomized controlled trial, patient (n=56) and therapist (n=44) participants completed a debriefing survey after their study completion (from December 2021 to January 2022). Participants were asked about their experience receiving a digital data dashboard in psychotherapy via closed- and open-ended questions. We calculated descriptive statistics for closed-ended questions and conducted qualitative coding via NVivo (version 10; Lumivero) and natural language processing using the machine learning tool latent Dirichlet allocation to analyze open-ended questions. Results: Of 100 participants, nearly half (n=48, 49%) described their experience with the dashboard as “positive,” while the other half noted a “neutral” experience. Responses to the open-ended questions resulted in three thematic areas (nine subcategories): (1) dashboard experience (positive, neutral or negative, and comfortable); (2) perception of the dashboard’s impact on enhancing therapy (accountability, increased awareness over time, and objectivity); and (3) dashboard refinements (additional sources, tailored content, and privacy). Conclusions: Patients reported that receiving their digital data helped them stay “accountable,” while therapists indicated that the dashboard helped “tailor treatment plans.” Patient and therapist surveys provided important feedback on their experience regularly discussing dashboards in psychotherapy. Trial Registration: ClinicalTrials.gov NCT04011540; https://clinicaltrials.gov/study/NCT04011540 %R 10.2196/59785 %U https://mental.jmir.org/2024/1/e59785 %U https://doi.org/10.2196/59785 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 16 %N %P e64508 %T A Practical Guide to Participatory Design Sessions for the Development of Information Visualizations: Tutorial %A Arcia,Adriana %A Stonbraker,Samantha %A Mangal,Sabrina %A Lor,Maichou %K audiovisual aids %K cultural competency %K health communication %K patient participation %K participatory design %K information visualization %K health literacy %K user-centered design %K human-computer interaction %D 2024 %7 13.12.2024 %9 %J J Particip Med %G English %X Participatory design is an increasingly common informatics method to engage intended audiences in the development of health-related resources. Participatory design is particularly helpful for developing information visualizations that aim to improve health outcomes by means of improved comprehension, communication or engagement, and subsequent behavior changes. Existing literature on participatory design lacks the practical details that influence the success of the method and does not address emergent issues, such as strategies to enhance internet-based data collection. In this tutorial, our objective is to provide practical guidance on how to prepare for, conduct, and analyze participatory design sessions for information visualization. The primary audience for this tutorial is research teams, but this guide is relevant for organizations and other health professionals looking to design visualizations for their patient populations, as they can use this guide as a procedural manual. This start-to-finish guide provides information on how to prepare for design sessions by setting objectives and applying theoretical foundations, planning design sessions to match project goals, conducting design sessions in different formats with varying populations, and carrying out effective analysis. We also address how the methods in this guide can be implemented in the context of resource constraints. This tutorial contains a glossary of relevant terms, pros and cons of variations in the type of design session, an informed consent template, a preparation checklist, a sample design session guide and selection of useful design session prompts, and examples of how surveys can supplement the design process. %R 10.2196/64508 %U https://jopm.jmir.org/2024/1/e64508 %U https://doi.org/10.2196/64508 %0 Journal Article %@ 2564-1891 %I JMIR Publications %V 4 %N %P e51701 %T Uncovering the Top Nonadvertising Weight Loss Websites on Google: A Data-Mining Approach %A Almenara,Carlos A %A Gulec,Hayriye %+ School of Health Sciences, Universidad Peruana de Ciencias Aplicadas, Av. Alameda San Marcos 11, Lima, 15067, Peru, 51 3133333 ext 2803, carlos.almenara@upc.pe %K consumer health informatics %K cyberattack risk %K data mining %K Google %K information seeking %K weight loss %K online health information %K website analysis %K digital health %K internet search %D 2024 %7 11.12.2024 %9 Original Paper %J JMIR Infodemiology %G English %X Background: Online weight loss information is commonly sought by internet users, and it may impact their health decisions and behaviors. Previous studies examined a limited number of Google search queries and relied on manual approaches to retrieve online weight loss websites. Objective: This study aimed to identify and describe the characteristics of the top weight loss websites on Google. Methods: This study gathered 432 Google search queries collected from Google autocomplete suggestions, “People Also Ask” featured questions, and Google Trends data. A data-mining software tool was developed to retrieve the search results automatically, setting English and the United States as the default criteria for language and location, respectively. Domain classification and evaluation technologies were used to categorize the websites according to their content and determine their risk of cyberattack. In addition, the top 5 most frequent websites in nonadvertising (ie, nonsponsored) search results were inspected for quality. Results: The results revealed that the top 5 nonadvertising websites were healthline.com, webmd.com, verywellfit.com, mayoclinic.org, and womenshealthmag.com. All provided accuracy statements and author credentials. The domain categorization taxonomy yielded a total of 101 unique categories. After grouping the websites that appeared less than 5 times, the most frequent categories involved “Health” (104/623, 16.69%), “Personal Pages and Blogs” (91/623, 14.61%), “Nutrition and Diet” (48/623, 7.7%), and “Exercise” (34/623, 5.46%). The risk of being a victim of a cyberattack was low. Conclusions: The findings suggested that while quality information is accessible, users may still encounter less reliable content among various online resources. Therefore, better tools and methods are needed to guide users toward trustworthy weight loss information. %M 39661980 %R 10.2196/51701 %U https://infodemiology.jmir.org/2024/1/e51701 %U https://doi.org/10.2196/51701 %U http://www.ncbi.nlm.nih.gov/pubmed/39661980 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e58581 %T Implementation of a Social Media Strategy for Public Health Promotion in Black, American Indian or Alaska Native, and Hispanic or Latino Communities During the COVID-19 Pandemic: Cross-Sectional Study %A Mora Pinzon,Maria %A Hills,Ornella %A Levy,George %A James,Taryn T %A Benitez,Ashley %A Lawrence,Sacheen %A Ellis,Tiffany %A Washington,Venus %A Solorzano,Lizbeth %A Tellez-Giron,Patricia %A Cano Ospina,Fernando %A Metoxen,Melissa F %A Gleason,Carey E %+ Division of Geriatrics and Gerontology, Department of Medicine, School of Medicine and Public Health, University of Wisconsin - Madison, 610 Walnut st, Madison, WI, 53726, United States, 1 6088902524, mmora2@wisc.edu %K health communications %K social media %K Hispanic %K Latino %K Black %K American Indian %K Alaska Native %K minority health %K health disparities %K COVID-19 %D 2024 %7 10.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Individuals identifying as Black, American Indian or Alaska Native, or Hispanic or Latino lack access to culturally appropriate accurate information and are the target of disinformation campaigns, which create doubt in science and health care providers and might play a role in sustaining health disparities related to the COVID-19 pandemic. Objective: This study aims to create and disseminate culturally and medically appropriate social media messages for Black, Latino, and American Indian or Alaska Native communities in Wisconsin and evaluate their reach and effectiveness in addressing the information needs of these communities. Methods: Our team identified relevant COVID-19 topics based on feedback from their respective community, developed lay format materials, and translated materials into culturally appropriate social media messages that community advocates delivered across their respective communities. Social media metrics (reach, engagement, and impressions) were collected using Sprout Social and Facebook Analytics. We hosted 9 focus groups with community members to learn about their social media use. These data were analyzed using an inductive approach, using NVivo software (release 1.7) to code content. Results: Between August 2021 and January 2023, we created 980 unique social media posts that reached 88,790 individuals and gathered >6700 engagements. Average reach per post was similar across the 3 communities, despite differences in the number of posts and followers on each page: 119.46 (Latino individuals), 111.74 (Black individuals), and 113.11 (Oneida Nation members). The type of posts that had higher engagement rate per reached person (ERR) varied across communities and platforms, with the highest being live videos for the Latino community on Facebook (ERR 9.4%), videos for the Black community on Facebook (ERR 19.53%), and social media messages for the Oneida Nation community (ERR 59.01%). Conclusions: Our project presents a unique and effective model for health messages and highlights the need for tailoring social media messages and approaches for minoritized audiences (eg, age, gender, race, and ethnicity). Further research studies are needed to explore how specific types of information affect the dissemination of information and the implications for health communications. %R 10.2196/58581 %U https://www.jmir.org/2024/1/e58581 %U https://doi.org/10.2196/58581 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 7 %N %P e59234 %T Factors Influencing Drug Prescribing for Patients With Hospitalization History in Circulatory Disease–Patient Severity, Composite Adherence, and Physician-Patient Relationship: Retrospective Cohort Study %A Takura,Tomoyuki %A Yokoi,Hiroyoshi %A Honda,Asao %+ Department of Health Care Services Management, Nihon University School of Medicine, 30-1 Oyaguchi Kamicho, Itabashi-ku, Tokyo, 113-8655, Japan, 81 03 3972 8111 ext 2282, takura.tomoyuki@nihon-u.ac.jp %K medication adherence %K drug prescription switch %K generic drug %K logistic model %K long-term longitudinal study %K patient severity %K systolic blood pressure %K serum creatinine %K aging %K big data %D 2024 %7 6.12.2024 %9 Original Paper %J JMIR Aging %G English %X Background: With countries promoting generic drug prescribing, their growth may plateau, warranting further investigation into the factors influencing this trend, including physician and patient perspectives. Additional strategies may be needed to maximize the switch to generic drugs while ensuring health care system sustainability, focusing on factors beyond mere low cost. Emphasizing affordability and clarifying other prescription considerations are essential. Objective: This study aimed to provide initial insights into how patient severity, composite adherence, and physician-patient relationships impact generic switching. Methods: This study used a long-term retrospective cohort design by analyzing data from a national health care database. The population included patients of all ages, primarily older adults, who required primary-to-tertiary preventive actions with a history of hospitalization for cardiovascular diseases (ICD-10 [International Statistical Classification of Diseases, Tenth Revision]) from April 2014 to March 2018 (4 years). We focused on switching to generic drugs, with temporal variations in clinical parameters as independent variables. Lifestyle factors (smoking and drinking) were also considered. Adherence was measured as a composite score comprising 11 elements. The physician-patient relationship was established based on the interval between physician change and prescription. Logistic regression analysis and propensity score matching were used, along with complementary analysis of physician-patient relationships, proportion of days covered, and adherence for a subset of the population. Results: The study included 48,456 patients with an average follow-up of 36.1 (SD 8.8) months. The mean age was 68.3 (SD 9.9) years; BMI, 23.4 (SD 3.4) kg/m2; systolic blood pressure, 131.2 (SD 15) mm Hg; low-density lipoprotein cholesterol level, 116.6 (SD 29.3) mg/dL; hemoglobin A1c (HbA1c), 5.9% (SD 0.8%); and serum creatinine level, 0.9 (SD 0.8) mg/dL. Logistic regression analysis revealed significant associations between generic switching and systolic blood pressure (odds ratio [OR] 0.996, 95% CI 0.993-0.999), serum creatinine levels (OR 0.837, 95% CI 0.729-0.962), glutamic oxaloacetic transaminase levels (OR 0.994, 95% CI 0.990-0.997), proportion of days covered score (OR 0.959, 95% CI 0.948-0.97), and adherence score (OR 0.910, 95% CI 0.875-0.947). In addition, generic drug rates increased with improvements in the HbA1c level band and smoking level (P<.01 and P<.001). The group with a superior physician-patient relationship after propensity score matching had a significantly higher rate of generic drug prescribing (51.6%, SD 15.2%) than the inferior relationship group (47.7%, SD17.7%; P<.001). Conclusions: Although physicians’ understanding influences the choice of generic drugs, patient condition (severity) and adherence also impact this decision. For example, improved creatinine levels are associated with generic drug choice, while stronger physician-patient relationships correlate with higher rates of generic drug use. These findings may contribute to the appropriate prescription of pharmaceuticals if the policy diffusion of generic drugs begins to slow down. Thus, preventing serious illness while building trust may result in clinical benefits and positive socioeconomic outcomes. %M 39421979 %R 10.2196/59234 %U https://aging.jmir.org/2024/1/e59234 %U https://doi.org/10.2196/59234 %U http://www.ncbi.nlm.nih.gov/pubmed/39421979 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e52871 %T The Resilience of Attitude Toward Vaccination: Web-Based Randomized Controlled Trial on the Processing of Misinformation %A Béchard,Benoît %A Gramaccia,Julie A %A Gagnon,Dominique %A Laouan-Sidi,Elhadji Anassour %A Dubé,Ève %A Ouimet,Mathieu %A de Hemptinne,Delphine %A Tremblay,Sébastien %+ School of Psychology, Université Laval, 2325 Allée des Bibliothèques, Pavillon Félix-Antoine-Savard, Québec, QC, G1V 0A6, Canada, 1 4186565383, benoit.bechard.1@ulaval.ca %K attitude toward vaccination %K misinformation %K reinformation %K confidence %K perceived tentativeness %K vaccine hesitancy %K COVID-19 %D 2024 %7 4.12.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Before the COVID-19 pandemic, it was already recognized that internet-based misinformation and disinformation could influence individuals to refuse or delay vaccination for themselves, their families, or their children. Reinformation, which refers to hyperpartisan and ideologically biased content, can propagate polarizing messages on vaccines, thereby contributing to vaccine hesitancy even if it is not outright disinformation. Objective: This study aimed to evaluate the impact of reinformation on vaccine hesitancy. Specifically, the goal was to investigate how misinformation presented in the style and layout of a news article could influence the perceived tentativeness (credibility) of COVID-19 vaccine information and confidence in COVID-19 vaccination. Methods: We conducted a web-based randomized controlled trial by recruiting English-speaking Canadians aged 18 years and older from across Canada through the Qualtrics (Silver Lake) paid opt-in panel system. Participants were randomly assigned to 1 of 4 distinct versions of a news article on COVID-19 vaccines, each featuring variations in writing style and presentation layout. After reading the news article, participants self-assessed the tentativeness of the information provided, their confidence in COVID-19 vaccines, and their attitude toward vaccination in general. Results: The survey included 537 participants, with 12 excluded for not meeting the task completion time. The final sample comprised 525 participants distributed about equally across the 4 news article versions. Chi-square analyses revealed a statistically significant association between general attitude toward vaccination and the perceived tentativeness of the information about COVID-19 vaccines included in the news article (χ21=37.8, P<.001). The effect size was small to moderate, with Cramer V=0.27. An interaction was found between vaccine attitude and writing style (χ21=6.2, P=.01), with a small effect size, Cramer V=0.11. In addition, a Pearson correlation revealed a significant moderate to strong correlation between perceived tentativeness and confidence in COVID-19 vaccination, r(523)=0.48, P<.001. The coefficient of determination (r2) was 0.23, indicating that 23% of the variance in perceived tentativeness was explained by confidence in COVID-19 vaccines. In comparing participants exposed to a journalistic-style news article with those exposed to an ideologically biased article, Cohen d was calculated to be 0.38, indicating a small to medium effect size for the difference in the perceived tentativeness between these groups. Conclusions: Exposure to a news article conveying misinformation may not be sufficient to change an individual’s level of vaccine hesitancy. The study reveals that the predominant factor in shaping individuals’ perceptions of COVID-19 vaccines is their attitude toward vaccination in general. This attitude also moderates the influence of writing style on perceived tentativeness; the stronger one’s opposition to vaccines, the less pronounced the impact of writing style on perceived tentativeness. International Registered Report Identifier (IRRID): RR2-10.2196/41012 %M 39413215 %R 10.2196/52871 %U https://formative.jmir.org/2024/1/e52871 %U https://doi.org/10.2196/52871 %U http://www.ncbi.nlm.nih.gov/pubmed/39413215 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e48882 %T Individual Characteristics in the Comprehension of Pandemic Video Communication: Randomized Controlled Between-Subjects Design %A Lungu,Daniel Adrian %A Røislien,Jo %A Smeets,Ionica %A Wiig,Siri %A Brønnick,Kolbjørn Kallesten %+ SHARE – Centre for Resilience in Healthcare, Department of Quality and Health Technology, Faculty of Health Sciences, University of Stavanger, PO Box 8600, Stavanger, 4021, Norway, 47 91532327, daniel.a.lungu@uis.no %K video communication %K COVID-19 pandemic %K comprehension %K health literacy %K video %K videos %K health communication %K psychology %K perception %K comprehend %K understanding %K coronavirus disease 2019 %D 2024 %7 4.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Video played an important role in health communication throughout the COVID-19 pandemic. It was used to communicate pandemic information to the public, with a variety of formats, presenters, and topics. Evidence regarding the effectiveness of video features is available, while how individual characteristics of recipients influence communication comprehension is still limited. Objective: This study aimed to test 6 individual characteristics and assess their effect on the comprehension of pandemic video communication. Methods: Short health communication videos were presented to a large sample of subjects, receiving questionnaire responses from 1194 participants. Individual characteristics consisted of age, sex, living area, education level, income level, and belief in science. Communication comprehension consisted of both perceived and objective comprehension. The data were analyzed by multiple linear regression. Results: Age had a negative effect on both perceived and objective comprehension—age was negatively associated with comprehension. There were sex differences, with higher perceived comprehension and lower objective comprehension among female than male individuals. Living in an urban or a rural area had no significant effect (all P>.05). The level of education and income had a positive effect on both subjective and objective comprehension. Finally, the belief in science had a positive effect on perceived comprehension (P<.001) but did not have a statistically significant effect on objective comprehension (P=.87). Conclusions: The main differences between those who think they understand pandemic communication and those who comprehend it better are sex (female individuals have a higher perception of having comprehended, while male individuals have higher levels of objective comprehension) and belief in science (higher belief in science leads to higher perceived comprehension, while it does not have any impact on objectively understanding the message conveyed). %M 39631064 %R 10.2196/48882 %U https://www.jmir.org/2024/1/e48882 %U https://doi.org/10.2196/48882 %U http://www.ncbi.nlm.nih.gov/pubmed/39631064 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 9 %N %P e62831 %T Association of Blood Glucose Data With Physiological and Nutritional Data From Dietary Surveys and Wearable Devices: Database Analysis %A Miyakoshi,Takashi %A Ito,Yoichi M %+ Department of Health Data Science, Hokkaido University Graduate School of Medicine, Kita 15, Nishi 7, Kita-ku, Sapporo, 060-8638, Japan, 81 11 706 7923, mi_taka_1112@huhp.hokudai.ac.jp %K PhysioNet %K Empatica %K Dexcom %K acceleration %K heart rate %K temperature %K electrodermal activity %D 2024 %7 3.12.2024 %9 Original Paper %J JMIR Diabetes %G English %X Background: Wearable devices can simultaneously collect data on multiple items in real time and are used for disease detection, prediction, diagnosis, and treatment decision-making. Several factors, such as diet and exercise, influence blood glucose levels; however, the relationship between blood glucose and these factors has yet to be evaluated in real practice. Objective: This study aims to investigate the association of blood glucose data with various physiological index and nutritional values using wearable devices and dietary survey data from PhysioNet, a public database. Methods: Three analytical methods were used. First, the correlation of each physiological index was calculated and examined to determine whether their mean values or SDs affected the mean value or SD of blood glucose. To investigate the impact of each physiological indicator on blood glucose before and after the time of collection of blood glucose data, lag data were collected, and the correlation coefficient between blood glucose and each physiological indicator was calculated for each physiological index. Second, to examine the relationship between postprandial blood glucose rise and fall and physiological and dietary nutritional assessment indices, multiple regression analysis was performed on the relationship between the slope before and after the peak in postprandial glucose over time and physiological and dietary nutritional indices. Finally, as a supplementary analysis to the multiple regression analysis, a 1-way ANOVA was performed to compare the relationship between the upward and downward slopes of blood glucose and the groups above and below the median for each indicator. Results: The analysis revealed several indicators of interest: First, the correlation analysis of blood glucose and physiological indices indicated meaningful relationships: acceleration SD (r=–0.190 for lag data at –15-minute values), heart rate SD (r=–0.121 for lag data at –15-minute values), skin temperature SD (r=–0.121), and electrodermal activity SD (r=–0.237) for lag data at –15-minute values. Second, in multiple regression analysis, physiological indices (temperature mean: t=2.52, P=.01; acceleration SD: t=–2.06, P=.04; heart rate_30 SD: t=–2.12, P=.04; electrodermal activity_90 SD: t=1.97, P=.049) and nutritional indices (mean carbohydrate: t=6.53, P<.001; mean dietary fiber: t=–2.51, P=.01; mean sugar: t=–3.72, P<.001) were significant predictors. Finally, the results of the 1-way ANOVA corroborated the findings from the multiple regression analysis. Conclusions: Similar results were obtained from the 3 analyses, consistent with previous findings, and the relationship between blood glucose, diet, and physiological indices in the real world was examined. Data sharing facilitates the accessibility of wearable data and enables statistical analyses from various angles. This type of research is expected to be more common in the future. %M 39626230 %R 10.2196/62831 %U https://diabetes.jmir.org/2024/1/e62831 %U https://doi.org/10.2196/62831 %U http://www.ncbi.nlm.nih.gov/pubmed/39626230 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e59904 %T Impact of Reverse Empowerment and Proactive Motivations on Physicians’ Online Knowledge Sharing in Digital Platforms: Survey Study %A Su,Jingyuan %A Shen,Kathy Ning %A Guo,Xitong %+ College of Business and Economics, Human Capital Research Center, United Arab Emirates University, PO Box 15551, Al Ain, United Arab Emirates, 971 556543825, ningshen@uaeu.ac.ae %K physician behavior %K online knowledge sharing %K proactivity %K patient empowerment %K digital platforms %K health communication %D 2024 %7 29.11.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Digital platforms offer a venue for patients and physicians to exchange health information and provide health care services outside traditional organizational contexts. Previous studies have seldom focused on the factors that drive the proactivity of physicians’ online behavior. Additionally, there is limited research exploring the influence of patients on physicians’ online behavior, particularly from the perspective of patients possessing power. Objective: This study aims to investigate the effect of patient-empowering behaviors on physicians’ online knowledge sharing and uncover the potential mechanisms of proactivity. Based on the proactive motivational model and empowerment theory, we propose the existence of a reverse empowerment process, where empowerment flows from patients to physicians. We suggest that patient-empowering behaviors may drive physicians’ online knowledge sharing as a form of proactivity. Specifically, 3 proactive motivational states—knowledge-sharing self-efficacy, sharing meaning, and positive professional affect—mediate this relationship. Additionally, platform extrinsic rewards, as a contextual factor, have a moderating effect. Methods: To validate our proposed research model, we conducted a survey in China using the WJX platform, targeting physicians engaged in online knowledge sharing. The measurement instrument utilizes validated items adapted from prior research, using a 5-point Likert scale. We collected 257 valid responses, ensuring that participation was both anonymous and voluntary. Data analysis was performed in 2 stages. The first stage assessed the measurement model for reliability and validity, using the Harman 1-factor test and confirmatory factor analysis. The second stage used partial least squares-structural equation modeling to examine the direct, moderation, and mediation effects among the constructs, with bootstrapping used for significance testing. This comprehensive approach ensures a robust analysis of the proposed hypotheses and contributes to the overall validity of our research model. Results: Perceived patient-empowering behaviors significantly and positively influence physicians’ online knowledge sharing (β=0.27, P<.001). Knowledge-sharing self-efficacy (effect=0.06, P=.04), sharing meaning (effect=0.12, P<.001), and positive professional affect (effect=0.10, P=.003) each partially mediate the effect of patient-empowering behaviors on physicians’ online knowledge sharing. The overall proactive motivational states play a complete mediation role, meaning the entire indirect effect of the model is significant (effect=0.29, P<.001), while the direct effect in the model is nonsignificant (effect=0.07, P=.26). Additionally, platform extrinsic rewards significantly and negatively moderate the effect of sharing meaning on physicians’ online knowledge sharing (β=–0.13, P=.001). Conclusions: This study is the first to recognize and examine proactivity as an alternative mediating mechanism for physicians’ online knowledge sharing, highlighting the active role of patients in empowering physicians. It makes a significant contribution to the existing literature on empowerment, eHealth, and proactive behavior. Additionally, the findings offer valuable guidance for designing and managing digital platforms to ensure service sustainability. %R 10.2196/59904 %U https://www.jmir.org/2024/1/e59904 %U https://doi.org/10.2196/59904 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e50476 %T Patients’ Use of Electronic Health Records Facilitates Patient-Centered Communication: Findings From the 2017 Health Information National Trends Survey %A Ahn,Suhwoo %A Lee,Chul-joo %A Bae,Inhwan %+ Department of Communication, Seoul National University, 504 IBK Communication Center, 1 Gwanak-ro, Gwanak-gu, Seoul, 08826, Republic of Korea, 82 2 880 4105, chales96@snu.ac.kr %K electronic health record %K health information efficacy %K patient-centered communication %K social support %K patient-centered care %D 2024 %7 25.11.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Patient-centered communication refers to interaction between patients and health professionals that considers patients’ preferences and empowers patients to contribute to their own care. Research suggests that patient-centered communication promotes patients’ satisfaction with care, trust in physicians, and competence in their abilities to manage their health. Objective: The study aims to explore the role of patients’ use of electronic health records (EHRs) in promoting patient-centered communication. Specifically, we investigated how health information efficacy mediates the association of EHR use with patient-centered communication and whether and how the relationship between EHR use and health information efficacy varies according to patients’ perceived social support levels. Methods: We conducted mediation and multigroup analyses using nationally representative data from the Health Information National Trends Survey 5 cycle 1 conducted in the United States (N=3285). Among respondents, we analyzed those who received care from health professionals over the previous year (2823/3285, 85.94%). Results: EHR use by patients was associated with high levels of health information efficacy (unstandardized coefficient=0.050, SE 0.024; P=.04). In turn, health information efficacy was positively related to patient-centered communication (unstandardized coefficient=0.154, SE 0.024; P<.001). The indirect pathway from EHR use to patient-centered communication, mediated by health information efficacy, was statistically significant (unstandardized coefficient=0.008, SE 0.004; P=.04). Among patients with high social support (2349/2823, 83.21%), EHR use was not significantly associated with health information efficacy (unstandardized coefficient=0.038, SE 0.026; P=.15), although health information efficacy was linked to high levels of patient-centered communication (unstandardized coefficient=0.151, SE 0.030; P<.001). The indirect relationship in this group was not significant (unstandardized coefficient=0.006, SE 0.004; P=.11). However, among those with low social support (474/2823, 16.79%), EHR use was positively associated with health information efficacy (unstandardized coefficient=0.155, SE 0.048; P=.001), which in turn relates to high levels of patient-centered communication (unstandardized coefficient=0.137, SE 0.050; P=.01). The indirect pathway was also significant (unstandardized coefficient=0.021, SE 0.010; P=.03). Conclusions: Patients who use EHRs may build health information efficacy, which seems to promote communication between patients and health care providers. This indirect pathway was not detected among patients with high social support. However, among those with low social support, EHR use seems to enhance health information efficacy, which may in turn facilitate patient-centered communication. Given the nature of the dataset used, the findings of this study are more relevant to the United States than other contexts. %M 39586071 %R 10.2196/50476 %U https://www.jmir.org/2024/1/e50476 %U https://doi.org/10.2196/50476 %U http://www.ncbi.nlm.nih.gov/pubmed/39586071 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 7 %N %P e64994 %T Indigenous Parents’ Perspectives of Factors That Facilitate or Impede Engagement in Internet-Based Parenting Support Programs: Interpretive Description Study %A Butt,Michelle L %A Willett,Ysabella Jayne %A Miller,Vicky %A Jacobs,Brenda %A Ferron,Era Mae %A Wright,Amy L %+ Lawrence Bloomberg Faculty of Nursing, University of Toronto, 155 College St, Toronto, ON, M5T 1P8, Canada, 1 416 978 0695, amyl.wright@utoronto.ca %K child %K parenting %K qualitative %K Indigenous health %K support programs %D 2024 %7 22.11.2024 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Parenting support programs enhance parents’ health and their child’s development. The COVID-19 pandemic necessitated the delivery of these programs over the internet. After the pandemic, internet-based programs are still preferred by some. Objective: We aimed to understand Indigenous parents’ experiences engaging in internet-based parenting support programs; thus, an interpretive description study was conducted. Methods: A total of 20 Indigenous (female, male, and Two-Spirit) parents of children aged <5 years participated in semistructured interviews; data underwent collaborative thematic analysis with Indigenous community partners informed by the Two-Eyed Seeing framework and ethical space. Results: Parents’ experiences were classified into five themes: (1) Purpose: Program Delivery and Content, (2) Belonging: Building Relationships and Connections, (3) Hope: Cultural Connection, (4) Meaning: New or Improved Parenting Skills and Mental Wellness, and (5) Recommendations for Organizations. Conclusions: The study findings can inform internet-based parenting program delivery to enhance engagement for Indigenous families. %M 39576680 %R 10.2196/64994 %U https://pediatrics.jmir.org/2024/1/e64994 %U https://doi.org/10.2196/64994 %U http://www.ncbi.nlm.nih.gov/pubmed/39576680 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e56473 %T The Impact of Patient Access to Electronic Health Records on Health Care Engagement: Systematic Review %A Alomar,Dalia %A Almashmoum,Maryam %A Eleftheriou,Iliada %A Whelan,Pauline %A Ainsworth,John %+ Division of Informatics, Imaging and Data Sciences, School of Health Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science System, The University of Manchester, Vaughan House, Portsmouth St, Manchester, M13 9GB, United Kingdom, 44 7917941877, dalia.alomar@postgrad.manchester.ac.uk %K electronic health records %K personal health record %K health care engagement %K empowerment %K patient experience %K patient satisfaction %K health care services %K systematic review %D 2024 %7 20.11.2024 %9 Review %J J Med Internet Res %G English %X 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. %M 39566058 %R 10.2196/56473 %U https://www.jmir.org/2024/1/e56473 %U https://doi.org/10.2196/56473 %U http://www.ncbi.nlm.nih.gov/pubmed/39566058 %0 Journal Article %@ 1947-2579 %I JMIR Publications %V 16 %N %P e58277 %T Rank Ordered Design Attributes for Health Care Dashboards Including Artificial Intelligence: Usability Study %A Malkani,Melina %A Madan,Eesha %A Malkani,Dillon %A Madan,Arav %A Singh,Neel %A Bamji,Tara %A Sabharwal,Harman %+ Bullis School, 10601 Falls Road, Potomac, MD, 20854, United States, 1 301 828 8315, melinamalkani@gmail.com %K data visualization %K dashboards %K public health %K population health %K informed decisions %K consumer decision-making %K health data %K usability %D 2024 %7 20.11.2024 %9 Original Paper %J Online J Public Health Inform %G English %X Background: On average, people in the United States visit a doctor 4 times a year, and many of them have chronic illnesses. Because of the increased use of technology, people frequently rely on the internet to access health information and statistics. People use health care information to make better-educated decisions for themselves and others. Health care dashboards should provide pertinent and easily understood data, such as information on timely cancer screenings, so the public can make better-informed decisions. In order to enhance health outcomes, effective dashboards should provide precise data in an accessible and easily digestible manner. Objective: This study identifies the top 15 attributes of a health care dashboard. The objective of this research is to enhance health care dashboards to benefit the public by making better health care information available for more informed decisions by the public and to improve population-level health care outcomes. Methods: The authors conducted a survey of health care dashboards with 218 individuals identifying the best practices to consider when creating a public health care dashboard. The data collection was conducted from June 2023 to August 2023. The analyses performed were descriptive statistics, frequencies, and a comparison to a prior study. Results: From May 2023 to June 2023, we collected 3259 responses in multiple different states around the United States from 218 people aged 18 years or older. The features ranking in descending order of importance are as follows: (1) easy navigation, (2) historical data, (3) simplicity of design, (4) high usability, (5) use of clear descriptions, (6) consistency of data, (7) use of diverse chart types, (8) compliance with the Americans with Disabilities Act, (9) incorporated user feedback, (10) mobile compatibility, (11) comparison data with other entities, (12) storytelling, (13) predictive analytics with artificial intelligence, (14) adjustable thresholds, and (15) charts with tabulated data. Conclusions: Future studies can extend the research to other types of dashboards such as bioinformatics, financial, and managerial dashboards as well as confirm these top 15 best practices for medical dashboards with further evidentiary support. The medical informatics community may benefit from standardization to improve efficiency and effectiveness as dashboards can communicate vital information to patients worldwide on critically prominent issues. Furthermore, health care professionals should use these best practices to help increase population health care outcomes by informing health care consumers to make better decisions with better data. %M 39566038 %R 10.2196/58277 %U https://ojphi.jmir.org/2024/1/e58277 %U https://doi.org/10.2196/58277 %U http://www.ncbi.nlm.nih.gov/pubmed/39566038 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e56166 %T Online Depression Communities as a Complementary Approach to Improving the Attitudes of Patients With Depression Toward Medication Adherence: Cross-Sectional Survey Study %A Chen,Runnan %A Fu,Xiaorong %A Liu,Mochi %A Liao,Ke %A Bai,Lifei %+ Department of Marketing, School of Business Administration, Southwestern University of Finance and Economics, 555 Liutai Road, Chengdu, 611130, China, 86 13981916682, fuxr@swufe.edu.cn %K online depression communities %K attitudes %K institution-generated content %K user-generated content %K perceived social support %K antidepressants %K hopelessness %K cross-sectional study %K China %K health care system %K online health community %K depression %K medication adherence %K social support %K health care practitioner %K peer support %D 2024 %7 19.11.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Lack of adherence to prescribed medication is common among patients with depression in China, posing serious challenges to the health care system. Online health communities have been found to be effective in enhancing patient compliance. However, empirical evidence supporting this effect in the context of depression treatment is absent, and the influence of online health community content on patients’ attitudes toward medication adherence is also underexplored. Objective: This study aims to explore whether online depression communities (ODCs) can help ameliorate the problem of poor medication taking among patients with depression. Drawing on the stimulus-organism-response and feelings-as-information theories, we established a research model to examine the influence of useful institution-generated content (IGC) and positive user-generated content (UGC) on attitudes toward medication adherence when combined with the mediating role of perceived social support, perceived value of antidepressants, and the moderating role of hopelessness. Methods: A cross-sectional questionnaire survey method was used in this research. Participants were recruited from various Chinese ODCs, generating data for a main study and 2 robustness checks. Hierarchical multiple regression analyses and bootstrapping analyses were adopted as the primary methods to test the hypotheses. Results: We received 1515 valid responses in total, contributing to 5 different datasets: model IGC (n=353, 23.3%), model UGC (n=358, 23.63%), model IGC+UGC (n=270, 17.82%), model IGC-B (n=266, 17.56%), and model UGC-B (n=268, 17.69%). Models IGC and UGC were used for the main study. Model IGC+UGC was used for robustness check A. Models IGC-B and UGC-B were used for robustness check B. Useful IGC and positive UGC were proven to have positive impact on the attitudes of patients with depression toward medication adherence through the mediations of perceived social support and perceived value of antidepressants. The findings corroborated the role of hopelessness in weakening or even negating the positive effects of ODC content on the attitudes of patients with depression toward medication adherence. Conclusions: This study provides the first empirical evidence demonstrating the relationship between ODC content and attitudes toward medication adherence, through which we offer a novel solution to the problem of poor medication adherence among patients with depression in China. Our findings also provide suggestions about how to optimize this new approach—health care practitioners should generate online content that precisely matches the informational needs of patients with depression, and ODC service providers should endeavor to regulate the community atmosphere. Nonetheless, we warn that ODC interventions cannot be used as the only approach to addressing the problem of poor medication taking among patients with severe depressive symptoms. %M 39561355 %R 10.2196/56166 %U https://www.jmir.org/2024/1/e56166 %U https://doi.org/10.2196/56166 %U http://www.ncbi.nlm.nih.gov/pubmed/39561355 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e57360 %T The Doctors, Their Patients, and the Symptom Checker App: Qualitative Interview Study With General Practitioners in Germany %A Preiser,Christine %A Radionova,Natalia %A Ög,Eylem %A Koch,Roland %A Klemmt,Malte %A Müller,Regina %A Ranisch,Robert %A Joos,Stefanie %A Rieger,Monika A %+ Institute of Occupational and Social Medicine and Health Services Research, University Hospital Tübingen, Wilhelmstr. 27, Tübingen, 72074, Germany, 49 70712984361, christine.preiser@med.uni-tuebingen.de %K symptom checker app %K qualitative interviews %K general practice %K perceived work-related psychosocial stress %K job satisfaction %K professional identity %K medical diagnosis %D 2024 %7 18.11.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Symptom checkers are designed for laypeople and promise to provide a preliminary diagnosis, a sense of urgency, and a suggested course of action. Objective: We used the international symptom checker app (SCA) Ada App as an example to answer the following question: How do general practitioners (GPs) experience the SCA in relation to the macro, meso, and micro level of their daily work, and how does this interact with work-related psychosocial resources and demands? Methods: We conducted 8 semistructured interviews with GPs in Germany between December 2020 and February 2022. We analyzed the data using the integrative basic method, an interpretative-reconstructive method, to identify core themes and modes of thematization. Results: Although most GPs in this study were open to digitization in health care and their practice, only one was familiar with the SCA. GPs considered the SCA as part of the “unorganized stage” of patients’ searching about their conditions. Some preferred it to popular search engines. They considered it relevant to their work as soon as the SCA would influence patients’ decisions to see a doctor. Some wanted to see the results of the SCA in advance in order to decide on the patient’s next steps. GPs described the diagnostic process as guided by shared decision-making, with the GP taking the lead and the patient deciding. They saw diagnosis as an act of making sense of data, which the SCA would not be able to do, despite the huge amounts of data. Conclusions: GPs took a techno-pragmatic view of SCA. They operate in a health care system of increasing scarcity. They saw the SCA as a potential work-related resource if it helped them to reduce administrative tasks and unnecessary patient contacts. The SCA was seen as a potential work-related demand if it increased workload, for example, if it increased patients’ anxiety, was too risk-averse, or made patients more insistent on their own opinions. %M 39556813 %R 10.2196/57360 %U https://humanfactors.jmir.org/2024/1/e57360 %U https://doi.org/10.2196/57360 %U http://www.ncbi.nlm.nih.gov/pubmed/39556813 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e55088 %T An Online Multimodal Food Data Exploration Platform for Specific Population Health: Development Study %A Yang,Lin %A Guo,Zhen %A Xu,Xiaowei %A Kang,Hongyu %A Lai,Jianqiang %A Li,Jiao %+ Institute of Medical Information and Library, Chinese Academy of Medical Sciences/Peking Union Medical College, No. 3, Yabao Rd, Chaoyang District, Beijing, 100020, China, 86 18618461596, li.jiao@imicams.ac.cn %K Chinese food data %K multimodal knowledge graph %K online platform %K population health promotion %K health promotion %K nutrients %K diet %K pregnant women %D 2024 %7 15.11.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Nutrient needs vary over the lifespan. Improving knowledge of both population groups and care providers can help with healthier food choices, thereby promoting population health and preventing diseases. Providing evidence-based food knowledge online is credible, low cost, and easily accessible. Objective: This study aimed to develop an online multimodal food data exploration platform for easy access to evidence-based diet- and nutrition-related data. Methods: We developed an online platform named Food Atlas in collaboration with a multidisciplinary expert group from the National Institute for Nutrition and Health and Peking Union Medical College Hospital in China. To demonstrate its feasibility for Chinese food for pregnant women, a user-friendly and high-quality multimodal food knowledge graph was constructed, and various interactions with graph-structured data were developed for easy access, including graph-based interactive visualizations, natural language retrieval, and image-text retrieval. Subsequently, we evaluated Food Atlas from both the system perspective and the user perspective. Results: The constructed multimodal food knowledge graph contained a total of 2011 entities, 10,410 triplets, and 23,497 images. Its schema consisted of 11 entity types and 26 types of semantic relations. Compared with 5 other online dietary platforms (Foodwake, Boohee, Xiachufang, Allrecipes, and Yummly), Food Atlas offers a distinct and comprehensive set of data content and system functions desired by target populations. Meanwhile, a total of 28 participants representing 4 different user groups were recruited to evaluate its usability: preparing for pregnancy (n=8), pregnant (n=12), clinicians (n=5), and dietitians (n=3). The mean System Usability Scale index of our platform was 82.5 (SD 9.94; range 40.0-82.5). This above-average usability score and the use cases indicated that Food Atlas is tailored to the needs of the target users. Furthermore, 96% (27/28) of the participants stated that the platform had high consistency, illustrating the necessity and effectiveness of health professionals participating in online, evidence-based resource development. Conclusions: This study demonstrates the development of an online multimodal food data exploration platform and its ability to meet the rising demand for accessible, credible, and appropriate evidence-based online dietary resources. Further research and broader implementation of such platforms have the potential to popularize knowledge, thereby helping populations at different life stages make healthier food choices. %M 39547662 %R 10.2196/55088 %U https://formative.jmir.org/2024/1/e55088 %U https://doi.org/10.2196/55088 %U http://www.ncbi.nlm.nih.gov/pubmed/39547662 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e60575 %T A Video-Based Communication Intervention for Fecal Ostomy Surgery (CI-oSurg): Protocol for Open Pilot Testing to Improve Intervention Acceptability and Feasibility %A Cauley,Christy Elaine %A Rubio,Atziri %A Brindle,Mary %A Cooper,Zara %A Vranceanu,Ana-Maria %A Ritchie,Christine S %+ Department of Surgery, Massachusetts General Hospital, Harvard Medical School, 55 Fruit St., Boston, MA, 02114, United States, 1 6177268129, ccauley@mgh.harvard.edu %K fecal ostomy %K distress %K open pilot %K fecal ostomy surgeryl CI-oSurg %K intervention acceptability %K biopsychosocial outcomes %K psychosocial support %K ostomy care %D 2024 %7 15.11.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Approximately 100,000 patients undergo fecal ostomy operations annually across the United States. This patient population experiences high surgical complication rates and poor biopsychosocial outcomes. Surgical teams are not trained to address the psychosocial needs that often arise during recovery after fecal ostomy surgery. Objective: This study aims to refine and establish the acceptability and usability of the Communication Intervention for fecal ostomy Surgery (CI-oSurg), a web-based communication intervention aimed at reducing distress among patients recovering from ostomy surgery. Methods: We describe the proposed study design, methodology, and training protocol. We will conduct an open pilot (n=24 patients and n=8 clinicians) of video-based training to first identify the level and types of distress patients are experiencing. Next, patients will view web videos that address frequent challenges faced by ostomy patients, considering practical management and emotional and adaptation concerns. Qualitative one-to-one semistructured interviews will be conducted with participants to explore the acceptability and feasibility of the program and refine the intervention and study procedures. Results: This study has been approved by the Mass General Brigham Institutional Review Board. Study funding has been obtained, and recruitment is planned for the fall of 2024. Conclusions: Through this study, we will refine CI-oSurg, a web-based communication intervention focused on reducing distress after ostomy surgery, to improve intervention acceptability and usability. These improvements will allow us to establish the usability and acceptability of the intervention before efficacy testing to determine the ability of this intervention to reduce distress after fecal ostomy surgery. Trial Registration: ClinicalTrials.gov NCT06320002; https://clinicaltrials.gov/study/NCT06320002 International Registered Report Identifier (IRRID): PRR1-10.2196/60575 %M 39546348 %R 10.2196/60575 %U https://www.researchprotocols.org/2024/1/e60575 %U https://doi.org/10.2196/60575 %U http://www.ncbi.nlm.nih.gov/pubmed/39546348 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e53299 %T Development and Usability of the OHiFamily Mobile App to Enhance Accessibility to Maternal and Infant Information for Expectant Families in Ohio: Qualitative Study %A Perme,Natalie %A Reid,Endia %A Eluagu,Macdonald Chinwenwa %A Thompson,John %A Hebert,Courtney %A Gabbe,Steven %A Swoboda,Christine Marie %+ The Center for the Advancement of Team Science, Analytics, and Systems Thinking in Health Services and Implementation Science Research (CATALYST), The Ohio State University Wexner Medical Center, Suite 4101, 700 Ackerman Rd., Columbus, OH, 43210, United States, 1 13157612701, swoboda.2@osu.edu %K health resources %K pregnancy %K patient engagement %K mHealth %K maternal %K mobile health %K app %K focus group %K landscape analysis %K birth %K preterm %K premature %K mortality %K death %K pediatric %K infant %K neonatal %K design %K development %K obstetric %K mobile phone %D 2024 %7 8.11.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: The Infant Mortality Research Partnership in Ohio is working to help pregnant individuals and families on Medicaid who are at risk for infant mortality and preterm birth. As part of this initiative, researchers at The Ohio State University worked to develop a patient-facing mobile app, OHiFamily, targeted toward, and created for, this population. To address the social determinants of health that can affect maternal and infant health, the app provides curated information on community resources, health care services, and educational materials in a format that is easily accessible and intended to facilitate contact between families and resources. The OHiFamily app includes 3 distinct features, that is, infant care logging (eg, feeding and diaper changes), curated educational resources, and a link to the curated Ohio resource database (CORD). This paper describes the development and assessment of the OHiFamily app as well as CORD. Objective: This study aimed to describe the development of the OHiFamily mobile app and CORD and the qualitative feedback received by the app’s intended audience. Methods: The researchers performed a landscape analysis and held focus groups to determine the resources and app features of interest to Ohio families on Medicaid. Results: Participants from several focus groups were interested in an app that could offer community resources with contact information, information about medical providers and information and ways to contact them, health tips, and information about pregnancy and infant development. Feedback was provided by 9 participants through 3 focus group sessions. Using this feedback, the team created a curated resource database and mobile app to help users locate and access resources, as well as access education materials and infant tracking features. Conclusions: OHiFamily offers a unique combination of features and access to local resources for families on Medicaid in Ohio not seen in other smartphone apps. %M 39514852 %R 10.2196/53299 %U https://formative.jmir.org/2024/1/e53299 %U https://doi.org/10.2196/53299 %U http://www.ncbi.nlm.nih.gov/pubmed/39514852 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55086 %T Racial and Demographic Disparities in Susceptibility to Health Misinformation on Social Media: National Survey-Based Analysis %A Chandrasekaran,Ranganathan %A Sadiq T,Muhammed %A Moustakas,Evangelos %+ University of Illinois at Chicago, 601 S Morgan Street, Chicago, IL, 60607, United States, 1 3129962847, ranga@uic.edu %K health misinformation %K digital divide %K racial disparities %K social media %K national survey-based analysis %K health information %K interventions %D 2024 %7 6.11.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Social media platforms have transformed the dissemination of health information, allowing for rapid and widespread sharing of content. However, alongside valuable medical knowledge, these platforms have also become channels for the spread of health misinformation, including false claims and misleading advice, which can lead to significant public health risks. Susceptibility to health misinformation varies and is influenced by individuals’ cultural, social, and personal backgrounds, further complicating efforts to combat its spread. Objective: This study aimed to examine the extent to which individuals report encountering health-related misinformation on social media and to assess how racial, ethnic, and sociodemographic factors influence susceptibility to such misinformation. Methods: Data from the Health Information National Trends Survey (HINTS; Cycle 6), conducted by the National Cancer Institute with 5041 US adults between March and November 2022, was used to explore associations between racial and sociodemographic factors (age, gender, race/ethnicity, annual household income, marital status, and location) and susceptibility variables, including encounters with misleading health information on social media, difficulty in assessing information truthfulness, discussions with health providers, and making health decisions based on such information. Results: Over 35.61% (1740/4959) of respondents reported encountering “a lot” of misleading health information on social media, with an additional 45% (2256/4959) reporting seeing “some” amount of health misinformation. Racial disparities were evident in comparison with Whites, with non-Hispanic Black (odds ratio [OR] 0.45, 95% CI 0.33-0.6, P<.01) and Hispanic (OR 0.54, 95% CI 0.41-0.71, P<.01) individuals reporting lower odds of finding deceptive information, while Hispanic (OR 1.68, 95% CI 1.48-1.98, P<.05) and non-Hispanic Asian (OR 1.96, 95% CI 1.21-3.18, P<.01) individuals exhibited higher odds in having difficulties in assessing the veracity of health information found on social media. Hispanic and Asian individuals were more likely to discuss with providers and make health decisions based on social media information. Older adults aged ≥75 years exhibited challenges in assessing health information on social media (OR 0.63, 95% CI 0.43-0.93, P<.01), while younger adults (18-34) showed increased vulnerability to health misinformation. In addition, income levels were linked to higher exposure to health misinformation on social media: individuals with annual household incomes between US $50,000 and US $75,000 (OR 1.74, 95% CI 1.14-2.68, P<.01), and greater than US $75,000 (OR 1.78, 95% CI 1.20-2.66, P<.01) exhibited greater odds, revealing complexities in decision-making and information access. Conclusions: This study highlights the pervasive presence of health misinformation on social media, revealing vulnerabilities across racial, age, and income groups, underscoring the need for tailored interventions. %M 39504121 %R 10.2196/55086 %U https://www.jmir.org/2024/1/e55086 %U https://doi.org/10.2196/55086 %U http://www.ncbi.nlm.nih.gov/pubmed/39504121 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e57611 %T Fostering Shared Decision-Making Between Patients and Health Care Professionals in Clinical Practice Guidelines: Protocol for a Project to Develop and Test a Tool for Guideline Developers %A Fischer,Lena %A Scheibler,Fülöp %A Schaefer,Corinna %A Karge,Torsten %A Langer,Thomas %A Schewe,Leon Vincent %A Florez,Ivan D %A Hutchinson,Andrew %A Li,Sheyu %A Maes-Carballo,Marta %A Munn,Zachary %A Perestelo-Perez,Lilisbeth %A Puljak,Livia %A Stiggelbout,Anne %A Pieper,Dawid %+ Institute for Health Services and Health System Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School (Theodor Fontane), Seebad 83, Rüdersdorf, 15562, Germany, 49 33638 83987, Lena.Fischer@mhb-fontane.de %K shared decision-making %K practice guidelines as topic %K decision support techniques %K support %K decision-making %K decisions %K tool %K testing tool %K protocol %K medical decision-making %K patient decision aid %K decision aid %K tool development %D 2024 %7 4.11.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Clinical practice guidelines (CPGs) are designed to assist health care professionals in medical decision-making, but they often lack effective integration of shared decision-making (SDM) principles to reflect patient values and preferences, particularly in the context of preference-sensitive CPG recommendations. To address this shortcoming and foster SDM through CPGs, the integration of patient decision aids (PDAs) into CPGs has been proposed as an important strategy. However, methods for systematically identifying and prioritizing CPG recommendations relevant to SDM and related decision support tools are currently lacking. Objective: The aim of the project is to develop (1) a tool for systematically identifying and prioritizing CPG recommendations for which SDM is considered particularly relevant and (2) a platform for PDAs to support practical SDM implementation. Methods: The project consists of 6 work packages (WPs). It is embedded in the German health care context but has an international focus. In WP 1, we will conduct a scoping review in bibliographic databases and gray literature sources to identify methods used to foster SDM via PDAs in the context of CPGs. In WP 2, we will conduct semistructured interviews with CPG experts to better understand the concepts of preference sensitivity and identify strategies for fostering SDM through CPGs. WP 3, a modified Delphi study including surveys and focus groups with SDM experts, aims to define and operationalize preference sensitivity. Based on the results of the Delphi study, we will develop a methodology for prioritizing key questions in CPGs. In WP 4, the tool will be developed. A list of relevant items to identify CPG recommendations for which SDM is most relevant will be created, tested, and iteratively refined, accompanied by the development of a user manual. In WP 5, a platform for creating and digitizing German-language PDAs will be developed to support the practical application of SDM during clinical encounters. WP 6 will conclude the project by testing the tool with newly developed and revised CPGs. Results: The Brandenburg Medical School Ethics Committee approved the project (165122023-ANF). An international multidisciplinary advisory board is involved to guide the tool development on CPGs and SDM. Patient partners are involved throughout the project, considering the essential role of the patient perspective in SDM. As of February 20, 2024, we are currently assessing literature references to determine eligibility for inclusion in the scoping review (WP 1). We expect the project to be completed by December 31, 2026. Conclusions: The tool will enable CPG developers to systematically incorporate aspects of SDM into CPG development, thereby providing guideline-based support for the patient-practitioner interaction. Together, the tool for CPGs and the platform for PDAs will create a systematic link between CPGs, SDM, and PDAs, which may facilitate SDM in clinical practice. International Registered Report Identifier (IRRID): DERR1-10.2196/57611 %M 39495553 %R 10.2196/57611 %U https://www.researchprotocols.org/2024/1/e57611 %U https://doi.org/10.2196/57611 %U http://www.ncbi.nlm.nih.gov/pubmed/39495553 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e51095 %T Assessing the Role of the Generative Pretrained Transformer (GPT) in Alzheimer’s Disease Management: Comparative Study of Neurologist- and Artificial Intelligence–Generated Responses %A Zeng,Jiaqi %A Zou,Xiaoyi %A Li,Shirong %A Tang,Yao %A Teng,Sisi %A Li,Huanhuan %A Wang,Changyu %A Wu,Yuxuan %A Zhang,Luyao %A Zhong,Yunheng %A Liu,Jialin %A Liu,Siru %+ Department of Medical Informatics, West China Medical School, No 37 Guoxue Road, Chengdu, 610041, China, 86 28 85422306, Dljl8@163.com %K Alzheimer's disease %K artificial intelligence %K AI %K large language model %K LLM %K Generative Pretrained Transformer %K GPT %K ChatGPT %K patient information %D 2024 %7 31.10.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Alzheimer’s disease (AD) is a progressive neurodegenerative disorder posing challenges to patients, caregivers, and society. Accessible and accurate information is crucial for effective AD management. Objective: This study aimed to evaluate the accuracy, comprehensibility, clarity, and usefulness of the Generative Pretrained Transformer’s (GPT) answers concerning the management and caregiving of patients with AD. Methods: In total, 14 questions related to the prevention, treatment, and care of AD were identified and posed to GPT-3.5 and GPT-4 in Chinese and English, respectively, and 4 respondent neurologists were asked to answer them. We generated 8 sets of responses (total 112) and randomly coded them in answer sheets. Next, 5 evaluator neurologists and 5 family members of patients were asked to rate the 112 responses using separate 5-point Likert scales. We evaluated the quality of the responses using a set of 8 questions rated on a 5-point Likert scale. To gauge comprehensibility and participant satisfaction, we included 3 questions dedicated to each aspect within the same set of 8 questions. Results: As of April 10, 2023, the 5 evaluator neurologists and 5 family members of patients with AD rated the 112 responses: GPT-3.5: n=28, 25%, responses; GPT-4: n=28, 25%, responses; respondent neurologists: 56 (50%) responses. The top 5 (4.5%) responses rated by evaluator neurologists had 4 (80%) GPT (GPT-3.5+GPT-4) responses and 1 (20%) respondent neurologist’s response. For the top 5 (4.5%) responses rated by patients’ family members, all but the third response were GPT responses. Based on the evaluation by neurologists, the neurologist-generated responses achieved a mean score of 3.9 (SD 0.7), while the GPT-generated responses scored significantly higher (mean 4.4, SD 0.6; P<.001). Language and model analyses revealed no significant differences in response quality between the GPT-3.5 and GPT-4 models (GPT-3.5: mean 4.3, SD 0.7; GPT-4: mean 4.4, SD 0.5; P=.51). However, English responses outperformed Chinese responses in terms of comprehensibility (Chinese responses: mean 4.1, SD 0.7; English responses: mean 4.6, SD 0.5; P=.005) and participant satisfaction (Chinese responses: mean 4.2, SD 0.8; English responses: mean 4.5, SD 0.5; P=.04). According to the evaluator neurologists’ review, Chinese responses had a mean score of 4.4 (SD 0.6), whereas English responses had a mean score of 4.5 (SD 0.5; P=.002). As for the family members of patients with AD, no significant differences were observed between GPT and neurologists, GPT-3.5 and GPT-4, or Chinese and English responses. Conclusions: GPT can provide patient education materials on AD for patients, their families and caregivers, nurses, and neurologists. This capability can contribute to the effective health care management of patients with AD, leading to enhanced patient outcomes. %M 39481104 %R 10.2196/51095 %U https://www.jmir.org/2024/1/e51095 %U https://doi.org/10.2196/51095 %U http://www.ncbi.nlm.nih.gov/pubmed/39481104 %0 Journal Article %@ 2817-1705 %I JMIR Publications %V 3 %N %P e64593 %T Understanding AI’s Role in Endometriosis Patient Education and Evaluating Its Information and Accuracy: Systematic Review %A Oliveira,Juliana Almeida %A Eskandar,Karine %A Kar,Emre %A de Oliveira,Flávia Ribeiro %A Filho,Agnaldo Lopes da Silva %+ Department of Women's Health, Federal University of Minas Gerais, Av Prof Alfredo Balena 190, Belo Horizonte, 30130-100, Brazil, 55 31975806261, julianaoliveira_md@outlook.com %K endometriosis %K gynecology %K machine learning %K artificial intelligence %K large language models %K natural language processing %K patient-generated health data %K health knowledge %K information seeking %K patient education %D 2024 %7 30.10.2024 %9 Review %J JMIR AI %G English %X Background: Endometriosis is a chronic gynecological condition that affects a significant portion of women of reproductive age, leading to debilitating symptoms such as chronic pelvic pain and infertility. Despite advancements in diagnosis and management, patient education remains a critical challenge. With the rapid growth of digital platforms, artificial intelligence (AI) has emerged as a potential tool to enhance patient education and access to information. Objective: This systematic review aims to explore the role of AI in facilitating education and improving information accessibility for individuals with endometriosis. Methods: This review followed the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines to ensure rigorous and transparent reporting. We conducted a comprehensive search of PubMed; Embase; the Regional Online Information System for Scientific Journals of Latin America, the Caribbean, Spain and Portugal (LATINDEX); Latin American and Caribbean Literature in Health Sciences (LILACS); Institute of Electrical and Electronics Engineers (IEEE) Xplore, and the Cochrane Central Register of Controlled Trials using the terms “endometriosis” and “artificial intelligence.” Studies were selected based on their focus on AI applications in patient education or information dissemination regarding endometriosis. We included studies that evaluated AI-driven tools for assessing patient knowledge and addressed frequently asked questions related to endometriosis. Data extraction and quality assessment were conducted independently by 2 authors, with discrepancies resolved through consensus. Results: Out of 400 initial search results, 11 studies met the inclusion criteria and were fully reviewed. We ultimately included 3 studies, 1 of which was an abstract. The studies examined the use of AI models, such as ChatGPT (OpenAI), machine learning, and natural language processing, in providing educational resources and answering common questions about endometriosis. The findings indicated that AI tools, particularly large language models, offer accurate responses to frequently asked questions with varying degrees of sufficiency across different categories. AI’s integration with social media platforms also highlights its potential to identify patients’ needs and enhance information dissemination. Conclusions: AI holds promise in advancing patient education and information access for endometriosis, providing accurate and comprehensive answers to common queries, and facilitating a better understanding of the condition. However, challenges remain in ensuring ethical use, equitable access, and maintaining accuracy across diverse patient populations. Future research should focus on developing standardized approaches for evaluating AI’s impact on patient education and exploring its integration into clinical practice to enhance support for individuals with endometriosis. %M 39476855 %R 10.2196/64593 %U https://ai.jmir.org/2024/1/e64593 %U https://doi.org/10.2196/64593 %U http://www.ncbi.nlm.nih.gov/pubmed/39476855 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e56390 %T An Online Tailored COVID-19 Vaccination Decision Aid for Dutch Citizens: Development, Dissemination, and Use %A Preuhs,Katharina %A Bussink-Voorend,Daphne %A van Keulen,Hilde M %A Wildeman,Ilona %A Hautvast,Jeannine %A Hulscher,Marlies %A van Empelen,Pepijn %+ Netherlands Organization for Applied Scientific Research (TNO), Expertise Group Child Health, PO Box 2215, Leiden, 2301 CE, Netherlands, 31 615597505, katharina.preuhs@tno.nl %K COVID-19 %K COVID-19 vaccination %K informed decision-making %K user-centered design %K low literacy %K eHealth %K tailored decision aid %D 2024 %7 30.10.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Since December 2019, COVID-19 led to a pandemic causing many hospitalizations and deaths. Vaccinations were developed and introduced to control viral transmission. In the Dutch context, the decision to accept vaccination is not mandatory. An informed decision is based on sufficient and reliable information, in line with one’s attitudes and values, and with consideration of pros and cons. To support people in informed decision-making, we developed an online COVID-19 vaccination decision aid (DA). Objective: This article aims to describe the development, dissemination, and use of the DA. Methods: Building on a previously developed DA, the COVID-19 vaccination DA was developed in 3 phases following a user-centered design approach: (1) definition phase, (2) concept testing, and (3) prototype testing. End users, individuals with low literacy, and experts (with relevant expertise on medical, behavioral, and low literacy aspects) were involved in the iterative development, design, and testing, with their feedback forming the basis for adaptations to the DA. Results: The DA was developed within 14 weeks. The DA consists of 3 modules, namely, Provide Information, Support Decision-Making, and Facilitate Actions Following a Decision. These modules are translated into various information tiles and diverse functionalities such as a knowledge test, a value clarification tool using a decisional balance, and a communication tool. The DA was disseminated for use in May 2021. Users varied greatly regarding age, gender, and location in the Netherlands. Conclusions: This paper elaborates on the development of the COVID-19 vaccination DA in a brief period and its dissemination for use among Dutch adults in the Netherlands. The evaluation of use showed that we were able to reach a large proportion and variety of people throughout the Netherlands. %M 39475719 %R 10.2196/56390 %U https://formative.jmir.org/2024/1/e56390 %U https://doi.org/10.2196/56390 %U http://www.ncbi.nlm.nih.gov/pubmed/39475719 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e62691 %T Transitioning Perspectives in Digital Health Through Phenomenology Integration %A Fiordelli,Maddalena %+ Institute of Public Health, Faculty of Biomedical Sciences, Università della Svizzera italiana, Via Buffi 13, Lugano, 6900, Switzerland, 41 586664139, maddalena.fiordelli@usi.ch %K eHealth %K digital health %K phenomenology %K phenomenological %K participatory %K health communication %K health information %K active listening %K lived experience %D 2024 %7 23.10.2024 %9 Viewpoint %J J Med Internet Res %G English %X The evolution of digital health, from its early days as eHealth to its current expansive scope, reflects a significant transformation in health care delivery and management. This transition underscores the integration of digital technologies across the health continuum from prevention and diagnosis to treatment and rehabilitation. The emergence of digital health has introduced innovative solutions but also posed challenges, particularly in aligning technological advancements with health needs, human experiences, and ethical considerations. This position paper aims to explore the integration of phenomenology in digital health, advocating for a paradigm that emphasizes the centrality of human experience in the design and implementation of digital health solutions. It specifically seeks to address challenges related to relevance for individuals who “speak” different languages, ensuring long-term use, addressing digital and health literacy, coordinating various sources, and navigating ethical issues in the rapidly evolving digital health landscape. Drawing upon years of research and practical experience in communication technologies and health, this paper uses a reflective approach to examine the intersection of digital health and phenomenology. It reviews the historical development of digital health, identifies the challenges faced during its evolution, and discusses the potential of phenomenological methods to enhance user-centered design and ethical practices in digital health. The integration of phenomenology into digital health facilitates a deeper understanding of user experiences, enabling the development of more responsive and ethical digital health solutions. Participatory design models, informed by phenomenological perspectives, offer a pathway to bridge the gap between technological innovation and human-centric health care. The paper highlights successful practices in digital health development, including mobile apps for vaccination decision-making and platforms for managing chronic conditions, illustrating the benefits of a phenomenological approach. Transitioning perspectives in digital health through phenomenology integration represents a critical step toward realizing the full potential of digital technologies in health care. %M 39442170 %R 10.2196/62691 %U https://www.jmir.org/2024/1/e62691 %U https://doi.org/10.2196/62691 %U http://www.ncbi.nlm.nih.gov/pubmed/39442170 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e63707 %T Development of a Digital Health Intervention for the Secondary Prevention of Cardiovascular Disease (INTERCEPT): Co-Design and Usability Testing Study %A Gibson,Irene %A Neubeck,Lis %A Corcoran,Marissa %A Morland,Chris %A Donovan,Steve %A Jones,Jennifer %A Costello,Caroline %A Hynes,Lisa %A Harris,Aisling %A Harrahill,Mary %A Lillis,Mary %A Atrey,Alison %A Ski,Chantal F %A Savickas,Vilius %A Byrne,Molly %A Murphy,Andrew W %A McEvoy,John William %A Wood,David %A Jennings,Catriona %+ School of Medicine, University of Galway, University Road, Galway, H91 TK33, Ireland, 353 91 544310, irene.gibson@universityofgalway.ie %K cardiovascular disease %K secondary prevention %K digital health %K intervention development %K co-design %K usability testing %K mobile health %K usability %K design %K conline workshop %K social support %K behavioral change %K self-monitoring %D 2024 %7 23.10.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Secondary prevention is an important strategy to reduce the burden of cardiovascular disease (CVD), a leading cause of death worldwide. Despite the growing evidence for the effectiveness of digital health interventions (DHIs) for the secondary prevention of CVD, the majority are designed with minimal input from target end users, resulting in poor uptake and usage. Objective: This study aimed to optimize the acceptance and effectiveness of a DHI for the secondary prevention of CVD through co-design, integrating end users’ perspectives throughout. Methods: A theory-driven, person-based approach using co-design was adopted for the development of the DHI, known as INTERCEPT. This involved a 4-phase iterative process using online workshops. In phase 1, a stakeholder team of health care professionals, software developers, and public and patient involvement members was established. Phase 2 involved identification of the guiding principles, content, and design features of the DHI. In phase 3, DHI prototypes were reviewed for clarity of language, ease of navigation, and functionality. To anticipate and interpret DHI usage, phase 4 involved usability testing with participants who had a recent cardiac event (<2 years). To assess the potential impact of usability testing, the System Usability Scale was administered before and after testing. The GUIDED (Guidance for Reporting Intervention Development Studies in Health Research) checklist was used to report the development process. Results: Five key design principles were identified: simplicity and ease of use, behavioral change through goal setting and self-monitoring, personalization, system credibility, and social support. Usability testing resulted in 64 recommendations for the app, of which 51 were implemented. Improvements in System Usability Scale scores were observed when comparing the results before and after implementing the recommendations (61 vs 83; P=.02). Conclusions: Combining behavior change theory with a person-based, co-design approach facilitated the development of a DHI for the secondary prevention of CVD that optimized responsiveness to end users’ needs and preferences, thereby potentially improving future engagement. %M 39441626 %R 10.2196/63707 %U https://humanfactors.jmir.org/2024/1/e63707 %U https://doi.org/10.2196/63707 %U http://www.ncbi.nlm.nih.gov/pubmed/39441626 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e58419 %T Adapting a Telehealth Physical Activity and Diet Intervention to a Co-Designed Website for Self-Management After Stroke: Tutorial %A Pogrebnoy,Dina %A Ashton,Lee %A Beh,Brian A %A Burke,Meredith %A Cullen,Richard %A Czerenkowski,Jude %A Davey,Julie %A Dennett,Amy M %A English,Kevin %A Godecke,Erin %A Harper,Nicole %A Lynch,Elizabeth %A MacDonald-Wicks,Lesley %A Patterson,Amanda %A Ramage,Emily %A Schelfhaut,Ben %A Simpson,Dawn B %A Zacharia,Karly %A English,Coralie %+ Department of Physiotherapy, Western Health, 176 Furlong Rd, St Albans, 3021, Australia, 61 0403432415, dina.pogrebnoy@uon.edu.au %K stroke %K secondary prevention %K co-design %K how-to guide, website development %K accessibility %K navigation %K self-management %D 2024 %7 22.10.2024 %9 Tutorial %J J Med Internet Res %G English %X People who experience a stroke are at a higher risk of recurrent stroke when compared with people who have not had a stroke. Addressing modifiable risk factors like physical inactivity and poor diet has been shown to improve blood pressure, a leading contributor to stroke. However, survivors of stroke often experience challenges with accessing risk reduction services including long wait lists, difficulty with transportation, fatigue, impaired function, and diminished exercise capacity. Providing health interventions via a website can extend the reach when compared with programs that are only offered face to face or via real-time telehealth. Given global challenges of accessing secondary prevention programs, it is important to consider alternative ways that this information can be made available to survivors of stroke worldwide. Using the “design thinking” framework and drawing on principles of the integrated knowledge translation approach, we adapted 2 co-designed telehealth programs called i-REBOUND – Let’s get moving (physical activity intervention) and i-REBOUND – Eat for health (diet Intervention) to create the i-REBOUND after stroke website. The aim of this paper is to describe the systematic process undertaken to adapt resources from the telehealth delivered i-REBOUND – Let’s get moving and i-REBOUND – Eat for health programs to a website prototype with a focus on navigation requirements and accessibility for survivors of stroke. We engaged a variety of key stakeholders with diverse skills and expertise in areas of stroke recovery, research, and digital health. We established a governance structure, formed a consumer advisory group, appointed a diverse project team, and agreed on scope of the project. Our process of adaptation had the following 3 phases: (1) understand, (2) explore, (3) materialize. Our approach considered the survivor of stroke at the center of all decisions, which helped establish guiding principles related to our prototype design. Careful and iterative engagement with survivors of stroke together with the application of design thinking principles allowed us to establish the functional requirements for our website prototype. Through user testing, we were able to confirm the technical requirements needed to build an accessible and easy-to-navigate website catering to the unique needs of survivors of stroke. We describe the process of adapting existing content and co-creating new digital content in partnership with, and featuring, people who have lived experience of stroke. In this paper, we provide a road map for the steps taken to adapt resources from 2 telehealth-delivered programs to a website format that meets specific navigation and accessibility needs of survivors of stroke. %M 39437389 %R 10.2196/58419 %U https://www.jmir.org/2024/1/e58419 %U https://doi.org/10.2196/58419 %U http://www.ncbi.nlm.nih.gov/pubmed/39437389 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e57698 %T The Quality and Cultural Safety of Online Osteoarthritis Information for Affected Persons and Health Care Professionals: Content Analysis %A Dhakal,Smita %A Merani,Shermeen %A Ahluwalia,Vandana %A Battistella,Marisa %A Borkhoff,Cornelia M %A Hazlewood,Glen Stewart %A Lofters,Aisha %A Marshall,Deborah A %A MacKay,Crystal %A Gagliardi,Anna R %+ University Health Network, 200 Elizabeth Street, Toronto, ON, M5G2C4, Canada, 1 416 340 4800, anna.gagliardi@uhnresearch.ca %K osteoarthritis %K women’s health %K equity %K educational materials %K internet %K content analysis %K Canada %K persons living with osteoarthritis %K healthcare professionals %K OA care %K ethno-culturally women %K immigrant women %K diverse women %K online materials %K health information %K prevention %K management %K misinformation %K cultural safety %K educational materials %D 2024 %7 18.10.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Osteoarthritis is more prevalent and severe among women than among men, but women are less likely to access early diagnosis and first-line management, particularly racialized immigrant women. Previous research advocated for greater access to culturally safe osteoarthritis information for both diverse women and health care professionals. The internet can reduce disparities by facilitating access to health information, but online materials can vary in quality. Objective: This study aimed to assess the quality and cultural safety of online osteoarthritis materials for persons affected by osteoarthritis and health care professionals. Methods: Content analysis was used to describe publicly available materials on osteoarthritis first-line management developed by Canadian organizations for affected persons or health care professionals. Searching, screening, and data extraction were performed in triplicate. We identified materials by searching Google, MEDLINE, and references of osteoarthritis-relevant guidelines and policies, and consulting our research team and collaborators. We assessed quality using DISCERN (University of Oxford) and a compiled framework for affected persons and health care professionals. We compiled frameworks to assess cultural safety. We derived an overall score, categorized as low (<50%), moderate (50%-69%), or high (≥70%+) for criteria met. Results: After screening 176 items and eliminating 129, we included 47 osteoarthritis materials published between 2013 and 2023. Of those, 43 were for persons with osteoarthritis, most were developed by charities (n=31, 72.1%), based on expert advice (n=16, 55.2%), and in the format of booklets (n=15, 34.9%) or text on web pages (n=10, 23.3%). Of those, 23.3% (10/43) low, 46.5% (20/43) moderate, and 30.2% (13/43) high scored quality; and 25.6% (11/43), 48.8% (21/43), and 25.6% (11/43) were rated low, moderate, and high cultural safety, respectively. Of the 47 included osteoarthritis materials, 4 were for health care professionals. They were developed by a consortium (2/4, 50%), a charity (1/4, 25%), and a professional society (1/4, 25%), and largely based on expert advice (3/4, 75%). The format included infographics (3/4, 75%) and text on web pages (1/4, 25%). Of those, 25% (1/4), 25% (1/4), and 50% (2/4) were rated low, moderate, and high quality, respectively; and all were rated low for cultural safety. Quality and cultural safety did not appear to be associated with the characteristics of osteoarthritis materials (eg, type of developer, development method, and format). Conclusions: Overall, included osteoarthritis materials for persons with osteoarthritis and health care professionals were of low to moderate quality and cultural safety. These findings reveal the need for further efforts to improve existing or develop new osteoarthritis materials for both affected persons, including ethnoculturally diverse immigrant women, and health care professionals. Further research is needed to assess the quality and cultural safety of osteoarthritis materials developed by organizations outside of Canada and to establish a framework or instrument to assess cultural safety in the osteoarthritis context. %M 39422989 %R 10.2196/57698 %U https://www.jmir.org/2024/1/e57698 %U https://doi.org/10.2196/57698 %U http://www.ncbi.nlm.nih.gov/pubmed/39422989 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e57062 %T Coproduction in Social Prescribing Initiatives: Protocol for a Scoping Review %A Dougherty,Madeline %A Tompkins,Tamara %A Zibrowski,Elaine %A Cram,Jesse %A Ashe,Maureen C %A Bhaskar,Le-Tien %A Card,Kiffer George %A Godfrey,Christina %A Hebert,Paul %A Lacombe,Ron %A Muhl,Caitlin %A Mulligan,Kate %A Mulvale,Gillian %A Nelson,Michelle L A %A Norman,Myrna %A Symes,Bobbi %A Teare,Gary %A Welch,Vivian %A Kothari,Anita %+ Faculty of Health and Rehabilitation Sciences, Western University, 1151 Richmond Street, London, ON, N6A 3K7, Canada, 1 519 617 8595, akothari@uwo.ca %K social prescribing %K coproduction %K codevelopment %K policy %K social prescription %K nonmedical need %K social need %K clinical setting %K community programs %K policy %K health care system %K pilot-tested %K user involvement %K health education %D 2024 %7 17.10.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Social prescribing (SP) takes a holistic approach to health by linking clients from clinical settings to community programs to address their nonmedical needs. The emerging evidence base for SP demonstrates variability in the design and implementation of different SP initiatives. To effectively address these needs, coproduction among clients, communities, stakeholders, and policy makers is important for tailoring SP initiatives for optimal uptake. Objective: This study aims to explore the role of coproduction in SP initiatives. The research question is as follows: How and for what purpose has coproduction been incorporated across a range of SP initiatives for different clients? Methods: A review of international literature will be conducted following the JBI guidelines for scoping reviews. We will search multiple databases including Scopus, MEDLINE, and the PAIS Index, as well as gray literature, from 2000 to 2023. The primary studies included will describe a nonmedical need for clients, a nonmedical SP program or initiative, coproduction of the SP program, and any follow-up. Review articles and commentaries will be excluded. Titles, abstracts, and full-text articles will be screened, and data will be extracted by at least 2 research team members using Covidence and a pilot-tested extraction template. Clients with lived experience will also participate in the research process. Findings will be descriptively summarized and thematically synthesized to answer the research question. Results: The project was funded in 2023, and the results are expected to be submitted for publication in early 2025. Conclusions: Descriptions of what coproduction is meant to accomplish may differ from theoretical aspirations. Continued understanding of how coproduction has been designed and executed across varied international SP models is important for framing engagement in practice for future SP arrangements and their evaluation. We anticipate this review will guide clients, communities, stakeholders, and policy makers in further developing SP practice within health care systems. Trial Registration: Open Science Framework Registries B8U4Z; https://osf.io/b8u4z International Registered Report Identifier (IRRID): DERR1-10.2196/57062 %M 39419498 %R 10.2196/57062 %U https://www.researchprotocols.org/2024/1/e57062 %U https://doi.org/10.2196/57062 %U http://www.ncbi.nlm.nih.gov/pubmed/39419498 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e60395 %T Intervention Development for Tailored Education for Aging and Cognitive Health (TEACH) for Dementia Prevention in Midlife Adults: Protocol for a Randomized Controlled Trial %A Korthauer,Laura E %A Rosen,Rochelle K %A Tremont,Geoffrey %A Davis,Jennifer D %+ Department of Psychiatry, Rhode Island Hospital, 1 Hoppin St., Providence, RI, 02903, United States, 1 4014444500, laura_korthauer@brown.edu %K health behavior change %K dementia prevention %K Alzheimer disease %K multidomain health intervention %K intervention development %K dementia %D 2024 %7 16.10.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: A total of 12 modifiable risk factors account for 40% of dementia cases globally, yet population adherence to health behaviors associated with these factors is low. Midlife is a critical window for dementia prevention, as brain pathology often begins to accumulate years or decades before the onset of symptoms. Although multidomain behavioral interventions have been efficacious in reducing the risk of cognitive decline, adherence is low. Intrapersonal factors, such as health beliefs, are known mediators of the relationship between knowledge and health behavior. Objective: In keeping with stage I of the National Institutes of Health (NIH) Stage Model for Behavioral Intervention Development, this study will use mixed methods to (1) develop an enhanced health education intervention, including an explanatory method for communicating information about dementia risk and personal health beliefs, and (2) conduct a pilot randomized controlled trial (n=20 per intervention arm) over 8 weeks to assess the feasibility of delivering the enhanced intervention versus basic health education alone. Methods: Phase 1 will involve focus groups and individual qualitative interviews. Focus groups will be analyzed using (1) a descriptive framework matrix analysis and (2) interpretive data review by the research team. Individual qualitative interviews will be coded using applied thematic analysis using a phenomenographic approach. Phase 2 will involve a pilot randomized controlled trial. Proximal outcomes (measured at baseline, 4 weeks, and 8 weeks) include the perceived threat of Alzheimer disease, dementia awareness, and self-efficacy. Results: This project was funded in August 2022. Data collection began in 2023 and is projected to be completed in 2025. Conclusions: Study findings will reveal the feasibility of delivering an 8-week multidomain health education intervention for primary prevention of dementia in midlife and will provide preliminary evidence of mechanisms of change. Trial Registration: ClinicalTrials.gov NCT05599425; https://clinicaltrials.gov/study/NCT05599425 International Registered Report Identifier (IRRID): DERR1-10.2196/60395 %M 39412840 %R 10.2196/60395 %U https://www.researchprotocols.org/2024/1/e60395 %U https://doi.org/10.2196/60395 %U http://www.ncbi.nlm.nih.gov/pubmed/39412840 %0 Journal Article %@ 2369-2529 %I JMIR Publications %V 11 %N %P e48154 %T An Evaluation of the Design of Multimedia Patient Education Materials in Musculoskeletal Health Care: Systematic Review %A Van Oirschot,Garett %A Pomphrey,Amanda %A Dunne,Caoimhe %A Murphy,Kate %A Blood,Karina %A Doherty,Cailbhe %+ School of Public Health, Physiotherapy & Sport Science, University College Dublin, 4 Stillorgan Road, Belfield, Dublin, D04 C7X2, Ireland, 353 17166511, garett.vanoirschot@ucdconnect.ie %K health education %K patient education %K patient education materials %K multimedia %K musculoskeletal diseases %K musculoskeletal pain %K eHealth %K self-management %D 2024 %7 15.10.2024 %9 Review %J JMIR Rehabil Assist Technol %G English %X Background: Educational multimedia is a cost-effective and straightforward way to administer large-scale information interventions to patient populations in musculoskeletal health care. While an abundance of health research informs the content of these interventions, less guidance exists about optimizing their design. Objective: This study aims to identify randomized controlled trials of patient populations with musculoskeletal conditions that used multimedia-based patient educational materials (PEMs) and examine how design was reported and impacted patients’ knowledge and rehabilitation outcomes. Design was evaluated using principles from the cognitive theory of multimedia learning (CTML). Methods: PubMed, CINAHL, PsycINFO, and Embase were searched from inception to September 2023 for studies examining adult patients with musculoskeletal conditions receiving multimedia PEMs compared to any other interventions. The primary outcome was knowledge retention measured via test scores. Secondary outcomes were any patient-reported measures. Retrievability was noted, and PEMs were sourced through search, purchase, and author communication. Results: A total of 160 randomized controlled trials were eligible for inclusion: 13 (8.1%) included their educational materials and 31 (19.4%) required a web search, purchase, or direct requests for educational materials. Of these 44 (27.5%) studies, none fully optimized the design of their educational materials, particularly lacking in the CTML principles of coherence, redundancy, modality, and generative activities for the learner. Of the 160 studies, the remaining 116 (72.5%) contained interventions that could not be retrieved or appraised. Learning was evaluated in 5 (3.1%) studies. Conclusions: Musculoskeletal studies should use open science principles and provide their PEMs wherever possible. The link between providing multimedia PEMs and patient learning is largely unexamined, but engagement potential may be maximized when considering design principles such as the CTML. %M 39162239 %R 10.2196/48154 %U https://rehab.jmir.org/2024/1/e48154 %U https://doi.org/10.2196/48154 %U http://www.ncbi.nlm.nih.gov/pubmed/39162239 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e58428 %T Exploring Client Preferences for Psychological Counselors in a Chinese Online Health Community: Longitudinal Study %A Feng,Xiandong %A Hu,Yinhuan %A Pfaff,Holger %A Liu,Sha %A Xie,Jinzhu %A Zhang,Zemiao %+ School of Medicine and Health Management, Tongji Medical College, Huazhong University of Science and Technology, 13 Hangkong Road, Qiaokou District, Wuhan, 430030, China, 86 83692730, hyh288@hotmail.com %K signaling theory %K psychological counselor %K online health communities %K clients’ choice %D 2024 %7 10.10.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Although online health communities are acknowledged for their role in bridging the supply-demand gap in mental health services, the client decision-making process in these environments remains underexplored. Objective: This study aimed to explore the impact of different signals presented on psychological counselors’ home pages on clients’ choices. Methods: Adopting signaling theory as the framework, this study classified information into online and offline signals and developed a theoretical model to examine client choice behaviors. We collected data from 487 psychological counselors in a leading Chinese online mental health community during March, June, September, and December 2023. Based on these data, we constructed a 4-period balanced panel dataset. A fixed effects model was used to analyze which signals influence clients’ choices of psychological counselors. Results: Regarding online signals, the service price (β=0.186, P<.001) and online reputation (β=0.489, P=.002) of psychological counselors positively influence clients’ choices. Concerning offline signals, psychological counselors’ practical experience (β=0.007, P<.001) is positively related to clients’ choices. Moreover, the results indicate that the relationship between a counselor’s prosocial behavior and clients’ choices is not linear but rather exhibits an inverted U-shape. Conclusions: This study reveals that the varied information provided by psychological counselors has distinct impacts on clients’ choices in online health communities. It broadens the application of signaling theory to online behaviors and emphasizes the importance of both online and offline signals. These insights offer strategic guidance for counselors and online platforms to better meet potential clients’ needs by optimizing the information presented on psychological counselors’ home pages. %M 39388694 %R 10.2196/58428 %U https://www.jmir.org/2024/1/e58428 %U https://doi.org/10.2196/58428 %U http://www.ncbi.nlm.nih.gov/pubmed/39388694 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e56354 %T Selling Misleading “Cancer Cure” Books on Amazon: Systematic Search on Amazon.com and Thematic Analysis %A Zenone,Marco %A van Schalkwyk,May %A Hartwell,Greg %A Caulfield,Timothy %A Maani,Nason %+ Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, Keppel St, London, WC1E 7HT, United Kingdom, marco.zenone@lshtm.ac.uk %K cancer %K Amazon %K misinformation %K e-commerce %K cancer cure %K cancer misinformation %K misleading %K cancer information %K treatment %K cancer treatment %K thematic analysis %K misleading %K online information %D 2024 %7 8.10.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: While the evidence base on web-based cancer misinformation continues to develop, relatively little is known about the extent of such information on the world’s largest e-commerce website, Amazon. Multiple media reports indicate that Amazon may host on its platform questionable cancer-related products for sale, such as books on purported cancer cures. This context suggests an urgent need to evaluate Amazon.com for cancer misinformation. Objective: This study sought to (1) examine to what extent are misleading cancer cure books for sale on Amazon.com and (2) determine how cancer cure books on Amazon.com provide misleading cancer information. Methods: We searched “cancer cure” on Amazon.com and retrieved the top 1000 English-language book search results. We reviewed the books’ descriptions and titles to determine whether the books provided misleading cancer cure or treatment information. We considered a book to be misleading if it suggested scientifically unsupported cancer treatment approaches to cure or meaningfully treat cancer. Among books coded as misleading, we conducted an inductive latent thematic analysis to determine the informational value the books sought to offer. Results: Nearly half (494/1000, 49.4%) of the sampled “cancer cure” books for sale on Amazon.com appeared to contain misleading cancer treatment and cure information. Overall, 17 (51.5%) out of 33 Amazon.com results pages had 50% or more of the books coded as misleading. The first search result page had the highest percentage of misleading books (23/33, 69.7%). Misleading books (n=494) contained eight themes: (1) claims of efficacious cancer cure strategies (n=451, 91.3%), (2) oversimplifying cancer and cancer treatment (n=194, 39.3%), (3) falsely justifying ineffective treatments as science based (n=189, 38.3%), (4) discrediting conventional cancer treatments (n=169, 34.2%), (5) finding the true cause of cancer (n=133, 26.9%), (6) homogenizing cancer (n=132, 26.7%), (7) discovery of new cancer treatments (n=119, 24.1%), and (8) cancer cure suppression (n=82, 16.6%). Conclusions: The results demonstrate that misleading cancer cure books are for sale, visible, and prevalent on Amazon.com, with prominence in initial search hits. These misleading books for sale on Amazon can be conceived of as forming part of a wider, cross-platform, web-based information environment in which misleading cancer cures are often given prominence. Our results suggest that greater enforcement is needed from Amazon and that cancer-focused organizations should engage in preemptive misinformation debunking. %M 39378429 %R 10.2196/56354 %U https://www.jmir.org/2024/1/e56354 %U https://doi.org/10.2196/56354 %U http://www.ncbi.nlm.nih.gov/pubmed/39378429 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55883 %T Efficacy of WeChat-Based Digital Intervention Versus Metformin in Women With Polycystic Ovary Syndrome: Randomized Controlled Trial %A Dilimulati,Diliqingna %A Shao,Xiaowen %A Wang,Lihua %A Cai,Meili %A Zhang,Yuqin %A Lu,Jiayi %A Wang,Yao %A Liu,Hongying %A Kuang,Ming %A Chen,Haibing %A Zhang,Manna %A Qu,Shen %+ Department of Endocrinology and Metabolism, Shanghai Tenth People’s Hospital, Tongji University School of Medicine, No. 301 Middle Yanchang Road, Shanghai, 200072, China, 86 13774448495, mannazhang@126.com %K polycystic ovary syndrome %K insulin resistance %K digital intervention %K metformin %K women’s health %D 2024 %7 2.10.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: The first-line treatment for polycystic ovary syndrome (PCOS) is lifestyle modification. However, it is currently unknown whether digital medicine can assist patients with PCOS in maintaining a healthy lifestyle while alleviating PCOS symptoms. Objective: This study aims to evaluate the efficacy of WeChat-based digital intervention versus metformin treatment in women with PCOS and insulin resistance. Methods: A total of 80 women with PCOS and insulin resistance were recruited from an endocrinology clinic and randomly assigned to receive either a WeChat-based digital intervention (n=40, 50%) or metformin (n=40, 50%) for 12 weeks. The WeChat-based digital intervention consisted of 3 modules; a coach assisted the patients in using the intervention. The primary outcome was the change in a homeostatic model assessment for insulin resistance. At baseline and after the 12-week intervention, anthropometric parameters, menstruation frequency, sex hormone levels, metabolic factors, and body fat distribution were measured in the clinic. Furthermore, self-assessed web-based questionnaires on diet, exercise, sleep, anxiety, and depression were obtained. Results: A total of 72 participants completed the follow-up (for a 90% follow-up rate), including 35 of 40 (88%) participants from the digital intervention group and 37 of 40 (93%) participants from the metformin group. The homeostatic model assessment for insulin resistance in the digital intervention group was significantly improved after 12 weeks of treatment with a mean change of –0.93 (95% CI –1.64 to –0.23), but no statistical difference was observed between the groups (least squares mean difference –0.20; 95% CI –0.98 to 0.58; P=.62). Both digital intervention and metformin treatment significantly improved menstruation frequency (digital intervention: P<.001; metformin: P<.001) and reduced body weight (digital intervention: P<.001; metformin: P<.001) and total fat mass (digital intervention: P<.001; metformin: P<.001). Furthermore, the digital intervention had a significant advantage over metformin in improving waist circumference (least squares mean difference –1.84; 95% CI –3.44 to –0.24; P=.03), waist-to-hip ratio (least squares mean difference –0.02; 95% CI –0.03 to 0.00; P=.03), total fat mass (least squares mean difference –1.59; 95% CI –2.88 to –0.30; P=.02), and dehydroepiandrosterone sulfate (least squares mean difference –69.73; 95% CI –129.70 to –9.75; P=.02). In terms of safety, the main adverse events were sensations of hunger in the digital intervention group (2/40, 5%) and gastrointestinal adverse events in the metformin group (12/40, 30%). Conclusions: Our data suggest that digital intervention is an effective treatment option for patients with PCOS, with an efficacy comparable to that of metformin, and that it can also alleviate the negative effects of medications and make it easier and more efficient to adhere to lifestyle treatments. WeChat-based digital interventions have the potential to provide a new path for the improvement and health of women with PCOS in China. Trial Registration: ClinicalTrials.gov NCT05386706; https://clinicaltrials.gov/study/NCT05386706 %M 39357046 %R 10.2196/55883 %U https://www.jmir.org/2024/1/e55883 %U https://doi.org/10.2196/55883 %U http://www.ncbi.nlm.nih.gov/pubmed/39357046 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e58831 %T “Doctor ChatGPT, Can You Help Me?” The Patient’s Perspective: Cross-Sectional Study %A Armbruster,Jonas %A Bussmann,Florian %A Rothhaas,Catharina %A Titze,Nadine %A Grützner,Paul Alfred %A Freischmidt,Holger %+ Department of Trauma and Orthopedic Surgery, BG Klinik Ludwigshafen, Ludwig-Guttmann-Strasse 13, Ludwigshafen am Rhein, 67071, Germany, 49 6216810, Holger.Freischmidt@bgu-ludwigshafen.de %K artificial intelligence %K AI %K large language models %K LLM %K ChatGPT %K patient education %K patient information %K patient perceptions %K chatbot %K chatbots %K empathy %D 2024 %7 1.10.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Artificial intelligence and the language models derived from it, such as ChatGPT, offer immense possibilities, particularly in the field of medicine. It is already evident that ChatGPT can provide adequate and, in some cases, expert-level responses to health-related queries and advice for patients. However, it is currently unknown how patients perceive these capabilities, whether they can derive benefit from them, and whether potential risks, such as harmful suggestions, are detected by patients. Objective: This study aims to clarify whether patients can get useful and safe health care advice from an artificial intelligence chatbot assistant. Methods: This cross-sectional study was conducted using 100 publicly available health-related questions from 5 medical specialties (trauma, general surgery, otolaryngology, pediatrics, and internal medicine) from a web-based platform for patients. Responses generated by ChatGPT-4.0 and by an expert panel (EP) of experienced physicians from the aforementioned web-based platform were packed into 10 sets consisting of 10 questions each. The blinded evaluation was carried out by patients regarding empathy and usefulness (assessed through the question: “Would this answer have helped you?”) on a scale from 1 to 5. As a control, evaluation was also performed by 3 physicians in each respective medical specialty, who were additionally asked about the potential harm of the response and its correctness. Results: In total, 200 sets of questions were submitted by 64 patients (mean 45.7, SD 15.9 years; 29/64, 45.3% male), resulting in 2000 evaluated answers of ChatGPT and the EP each. ChatGPT scored higher in terms of empathy (4.18 vs 2.7; P<.001) and usefulness (4.04 vs 2.98; P<.001). Subanalysis revealed a small bias in terms of levels of empathy given by women in comparison with men (4.46 vs 4.14; P=.049). Ratings of ChatGPT were high regardless of the participant’s age. The same highly significant results were observed in the evaluation of the respective specialist physicians. ChatGPT outperformed significantly in correctness (4.51 vs 3.55; P<.001). Specialists rated the usefulness (3.93 vs 4.59) and correctness (4.62 vs 3.84) significantly lower in potentially harmful responses from ChatGPT (P<.001). This was not the case among patients. Conclusions: The results indicate that ChatGPT is capable of supporting patients in health-related queries better than physicians, at least in terms of written advice through a web-based platform. In this study, ChatGPT’s responses had a lower percentage of potentially harmful advice than the web-based EP. However, it is crucial to note that this finding is based on a specific study design and may not generalize to all health care settings. Alarmingly, patients are not able to independently recognize these potential dangers. %M 39352738 %R 10.2196/58831 %U https://www.jmir.org/2024/1/e58831 %U https://doi.org/10.2196/58831 %U http://www.ncbi.nlm.nih.gov/pubmed/39352738 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e49720 %T Assessing the Utility of a Patient-Facing Diagnostic Tool Among Individuals With Hypermobile Ehlers-Danlos Syndrome: Focus Group Study %A Goehringer,Jessica %A Kosmin,Abigail %A Laible,Natalie %A Romagnoli,Katrina %+ Department of Genomic Health, Geisinger, 100 North Academy Avenue, Dept of Genomic Health, Danville, PA, 17822, United States, 1 5702141005, jgoehringer@geisinger.edu %K diagnostic tool %K hypermobile Ehlers-Danlos syndrome %K patient experiences %K diagnostic odyssey %K affinity mapping %K mobile health app %K mobile phone %D 2024 %7 26.9.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Hypermobile Ehlers-Danlos syndrome (hEDS), characterized by joint hypermobility, skin laxity, and tissue fragility, is thought to be the most common inherited connective tissue disorder, with millions affected worldwide. Diagnosing this condition remains a challenge that can impact quality of life for individuals with hEDS. Many with hEDS describe extended diagnostic odysseys involving exorbitant time and monetary investment. This delay is due to the complexity of diagnosis, symptom overlap with other conditions, and limited access to providers. Many primary care providers are unfamiliar with hEDS, compounded by genetics clinics that do not accept referrals for hEDS evaluation and long waits for genetics clinics that do evaluate for hEDS, leaving patients without sufficient options. Objective: This study explored the user experience, quality, and utility of a prototype of a patient-facing diagnostic tool intended to support clinician diagnosis for individuals with symptoms of hEDS. The questions included within the prototype are aligned with the 2017 international classification of Ehlers-Danlos syndromes. This study explored how this tool may help patients communicate information about hEDS to their physicians, influencing the diagnosis of hEDS and affecting patient experience. Methods: Participants clinically diagnosed with hEDS were recruited from either a medical center or private groups on a social media platform. Interested participants provided verbal consent, completed questionnaires about their diagnosis, and were invited to join an internet-based focus group to share their thoughts and opinions on a diagnostic tool prototype. Participants were invited to complete the Mobile App Rating Scale (MARS) to evaluate their experience viewing the diagnostic tool. The MARS is a framework for evaluating mobile health apps across 4 dimensions: engagement, functionality, esthetics, and information quality. Qualitative data were analyzed using affinity mapping to organize information and inductively create themes that were categorized within the MARS framework dimensions to help identify strengths and weaknesses of the diagnostic tool prototype. Results: In total, 15 individuals participated in the internet-based focus groups; 3 (20%) completed the MARS. Through affinity diagramming, 2 main categories of responses were identified, including responses related to the user interface and responses related to the application of the tool. Each category included several themes and subthemes that mapped well to the 4 MARS dimensions. The analysis showed that the tool held value and utility among the participants diagnosed with hEDS. The shareable ending summary sheet provided by the tool stood out as a strength for facilitating communication between patient and provider during the diagnostic evaluation. Conclusions: The results provide insights on the perceived utility and value of the tool, including preferred phrasing, layout and design preferences, and tool accessibility. The participants expressed that the tool may improve the hEDS diagnostic odyssey and help educate providers about the diagnostic process. %M 39325533 %R 10.2196/49720 %U https://formative.jmir.org/2024/1/e49720 %U https://doi.org/10.2196/49720 %U http://www.ncbi.nlm.nih.gov/pubmed/39325533 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55546 %T Evaluating the National Rollout of a Type 2 Diabetes Self-Management Intervention: Qualitative Interview Study With Local National Health Service Leads Responsible for Implementation %A Brunton,Lisa %A Cotterill,Sarah %A Wilson,Paul %+ Division of Population Health, Health Services Research & Primary Care, School of Health Sciences, University of Manchester, Suite 3, 6th Floor Williamson Building, Oxford Road, Manchester, M13 9PL, United Kingdom, 44 161 275 7603, lisa.brunton@manchester.ac.uk %K type 2 diabetes %K structured education %K self-management %K digital interventions %K implementation %K qualitative methods %K evaluation %D 2024 %7 25.9.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Approximately 4.5 million people live with type 2 diabetes mellitus (T2DM) in the United Kingdom. Evidence shows that structured education programs can improve glycemic control and reduce the risk of complications from T2DM, but they have low attendance rates. To widen access to T2DM structured education, National Health Service England commissioned a national rollout of Healthy Living, a digital self-management program. Objective: The objectives were to understand the barriers and enablers to adopting, implementing, and integrating Healthy Living into existing T2DM care pathways across England. Methods: We undertook a cross-sectional, qualitative telephone semistructured interview study to address the objectives. In total, 17 local National Health Service leads responsible for implementing Healthy Living across their locality were recruited. We conducted 16 one-time interviews across 16 case sites (1 of the interviews was conducted with 2 local leads from the same case site). Interview data were analyzed using thematic analysis. Results: Three overarching themes were generated: (1) implementation activities, (2) where Healthy Living fits within existing pathways, and (3) contextual factors affecting implementation. Of the 16 sites, 14 (88%) were implementing Healthy Living; the barrier to not implementing it in 2 case sites was not wanting Healthy Living to compete with their current education provision for T2DM. We identified 6 categories of implementation activities across sites: communication strategies to raise awareness of Healthy Living, developing bespoke local resources to support general practices with referrals, providing financial reimbursement or incentives to general practices, promoting Healthy Living via public events, monitoring implementation across their footprint, and widening access across high-need groups. However, outside early engagement sites, most implementation activities were “light touch,” consisting mainly of one-way communications to raise awareness. Local leads were generally positive about Healthy Living as an additional part of their T2DM structured education programs, but some felt it was more suited to specific patient groups. Barriers to undertaking more prolonged, targeted implementation campaigns included implementation not being mandated, sites not receiving data on uptake across their footprint, and confusion in understanding where Healthy Living fit within existing care pathways. Conclusions: A passive process of disseminating information about Healthy Living to general practices rather than an active process of implementation occurred across most sites sampled. This study identified that there is a need for clearer communications regarding the type of patients that may benefit from the Healthy Living program, including when it should be offered and whether it should be offered instead of or in addition to other education programs. No sites other than early engagement sites received data to monitor uptake across their footprint. Understanding variability in uptake across practices may have enabled sites to plan targeted referral campaigns in practices that were not using the service. %M 39321457 %R 10.2196/55546 %U https://www.jmir.org/2024/1/e55546 %U https://doi.org/10.2196/55546 %U http://www.ncbi.nlm.nih.gov/pubmed/39321457 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e54046 %T Design of a Tool Capable of Assessing Environmental Sociocultural Physical Factors Influencing Women’s Decisions on When and Where to Toilet Within Real-World Settings: Protocol for the Build and Usability Testing of a Mobile App for Use by Community-Dwelling Women %A Miller,Janis M %A Wyman,Jean F %A An,Lawrence %A Chu,Haitao %A Fok,Cynthia S %A Lavender,Missy %A Lewis,Cora Elizabeth %A Markland,Alayne D %A Rickey,Leslie M %A Sheng,Ying %A Sutcliffe,Siobhan %A Low,Lisa Kane %A Mueller,Elizabeth R %A , %+ Department of Health Behavior and Biological Sciences, School of Nursing, University of Michigan, 400 N. Ingalls, Ann Arbor, MI, 48109, United States, 1 7347644545, janismm@umich.edu %K mobile app %K urinary bladder %K woman’s health %K toileting %K ecological momentary assessment %K time factors %K population studies %K real-world environment %K mobile phone %D 2024 %7 18.9.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Although surveys and apps are available for women to report urination and bladder symptoms, they do not include their decisions regarding toileting. Real-world factors can interfere with toileting decisions, which may then influence bladder health. This premise lacks data per want of a robust data collection tool. Objective: The Prevention of Lower Urinary Tract Symptoms (PLUS) research consortium engaged a transdisciplinary team to build and test WhereIGo, a mobile data collection app for Android and iOS. The design goal was a comprehensive reporting system for capturing environmental, sociocultural, and physical factors that influence women’s decisions for toileting. Aims include having (1) an innovative feature for reporting physiologic urge sensation when “thinking about my bladder” and shortly before “I just peed,” (2) real-time reporting along with short look-back opportunities, and (3) ease of use anywhere. Methods: The development team included a plain language specialist, a usability specialist, creative designers, programming experts, and PLUS scientific content experts. Both real-time and ecological momentary assessments were used to comprehensively capture influences on toileting decisions including perceived access to toileting, degree of busyness or stress or focus, beverage intake amount, urge degree, or a leakage event. The restriction on the maximal number of taps for any screen was six. PLUS consortium investigators did pilot-testing. Formal usability testing relied on the recruitment of community-dwelling women at four PLUS research sites. Women used the app for 2 consecutive days. Outcome measures were the system usability scale (SUS; 0-100 range) and the functional Mobile Application Rating Scale (1-5 range). These scales were embedded at the end of the app. The estimated a priori sample size needed, considering the SUS cut point score set at ≥74, was 40 women completing the study. Results: Funding was provided by the National Institute of Diabetes and Digestive and Kidney Diseases since July 2015. The integrity of the build process was documented through multiple 5-minute videos presented to PLUS Consortium and through WhereIGo screenshots of the final product. Participants included 44 women, with 41 (93%) completing data collection. Participants ranged in age from 21 to 85 years, were predominantly non-Hispanic White (n=25, 57%), college-educated (n=25, 57%), and with incomes below US $75,000 (n=27, 62%). The SUS score was 78.0 (SE 1.7), which was higher than 75% of the 500 products tested by the SUS developers. The mean functional Mobile Application Rating Scale score was 4.4 (SE 0.08). The build and informal acceptability testing were completed in 2019, enrollment for formal usability testing completed by June 2020, and analysis was completed in 2022. Conclusions: WhereIGo is a novel app with good usability for women to report toileting decisions, urination, and fluid intake. Future research using the app could test the influence of real-time factors on bladder health. International Registered Report Identifier (IRRID): RR1-10.2196/54046 %M 39293052 %R 10.2196/54046 %U https://www.researchprotocols.org/2024/1/e54046 %U https://doi.org/10.2196/54046 %U http://www.ncbi.nlm.nih.gov/pubmed/39293052 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e56935 %T Lessons Learned From Shared Decision-Making With Oral Anticoagulants: Viewpoint on Suggestions for the Development of Oral Chemotherapy Decision Aids %A McLoughlin,Daniel E %A Moreno Echevarria,Fabiola M %A Badawy,Sherif M %+ Northwestern University Feinberg School of Medicine, 420 E Superior St, Chicago, IL, 60611, United States, 1 312 503 8194, daniel.mcloughlin@northwestern.edu %K shared decision-making %K SDM %K decision aids %K decision aids design %K oral chemotherapy %K oral anticoagulants %K drug delivery %K chemotherapy %K chemo %K anticoagulants %K drug deliveries %K cancer %K oncology %K oncologist %K metastases %K literature review %K literature reviews %D 2024 %7 11.9.2024 %9 Viewpoint %J JMIR Cancer %G English %X Oral chemotherapy is commonly prescribed, and by using decision aids (DAs), clinicians can facilitate shared decision-making (SDM) to align treatment choices with patient goals and values. Although products exist commercially, little evidence informs the development of DAs targeting the unique challenges of oral chemotherapy. To address this gap in the literature, our objective was to review DAs developed for oral anticoagulation, DA use in oncology, and patient preference surveys to guide the development of DAs for oral chemotherapy. We focused on reviewing SDM, patient preferences, and specifically the development, efficacy, and patient experience of DAs in oral anticoagulation and oncologic conditions, ultimately including conclusions and data from 30 peer-reviewed publications in our viewpoint paper. We found that effective DAs in oral anticoagulation improved knowledge, lowered decisional conflict, increased adherence, and covered a broad range of SDM elements; however, limited information on patient experience was a common shortcoming. In oncology, DAs increased knowledge and aligned decisions with the values of the patients. Ineffective oncology DAs provided general, unclear, or overly optimistic information, while providing “too much” information was not shown to do harm. Patients preferred DAs that included pros and cons, side effects, questions to ask, and expected quality of life changes. In developing DAs for oral chemotherapy, patients should be included in the development process, and DA content should be specifically tailored to patient preferences. Providing DAs ahead of appointments proved more effective than during, and additional considerations included addressing barriers to efficacy. There is a need for evidence-based DAs to facilitate SDM for patients considering oral chemotherapy. Developers should use data from studies in oral anticoagulation, oncology, and preference surveys to optimize SDM. %M 39187430 %R 10.2196/56935 %U https://cancer.jmir.org/2024/1/e56935 %U https://doi.org/10.2196/56935 %U http://www.ncbi.nlm.nih.gov/pubmed/39187430 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e56022 %T An Advanced Machine Learning Model for a Web-Based Artificial Intelligence–Based Clinical Decision Support System Application: Model Development and Validation Study %A Lin,Tai-Han %A Chung,Hsing-Yi %A Jian,Ming-Jr %A Chang,Chih-Kai %A Perng,Cherng-Lih %A Liao,Guo-Shiou %A Yu,Jyh-Cherng %A Dai,Ming-Shen %A Yu,Cheng-Ping %A Shang,Hung-Sheng %+ Division of Clinical Pathology, Department of Pathology, Tri-Service General Hospital, National Defense Medical Center, No. 161, Sec. 6, Minquan E. Road, Neihu District, Taipei, 11490, Taiwan, 886 920713130, iamkeith001@gmail.com %K breast cancer recurrence %K artificial intelligence–based clinical decision support system %K machine learning %K personalized treatment planning %K ChatGPT %K predictive model accuracy %D 2024 %7 4.9.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Breast cancer is a leading global health concern, necessitating advancements in recurrence prediction and management. The development of an artificial intelligence (AI)–based clinical decision support system (AI-CDSS) using ChatGPT addresses this need with the aim of enhancing both prediction accuracy and user accessibility. Objective: This study aims to develop and validate an advanced machine learning model for a web-based AI-CDSS application, leveraging the question-and-answer guidance capabilities of ChatGPT to enhance data preprocessing and model development, thereby improving the prediction of breast cancer recurrence. Methods: This study focused on developing an advanced machine learning model by leveraging data from the Tri-Service General Hospital breast cancer registry of 3577 patients (2004-2016). As a tertiary medical center, it accepts referrals from four branches—3 branches in the northern region and 1 branch on an offshore island in our country—that manage chronic diseases but refer complex surgical cases, including breast cancer, to the main center, enriching our study population’s diversity. Model training used patient data from 2004 to 2012, with subsequent validation using data from 2013 to 2016, ensuring comprehensive assessment and robustness of our predictive models. ChatGPT is integral to preprocessing and model development, aiding in hormone receptor categorization, age binning, and one-hot encoding. Techniques such as the synthetic minority oversampling technique address the imbalance of data sets. Various algorithms, including light gradient-boosting machine, gradient boosting, and extreme gradient boosting, were used, and their performance was evaluated using metrics such as the area under the curve, accuracy, sensitivity, and F1-score. Results: The light gradient-boosting machine model demonstrated superior performance, with an area under the curve of 0.80, followed closely by the gradient boosting and extreme gradient boosting models. The web interface of the AI-CDSS tool was effectively tested in clinical decision-making scenarios, proving its use in personalized treatment planning and patient involvement. Conclusions: The AI-CDSS tool, enhanced by ChatGPT, marks a significant advancement in breast cancer recurrence prediction, offering a more individualized and accessible approach for clinicians and patients. Although promising, further validation in diverse clinical settings is recommended to confirm its efficacy and expand its use. %M 39231422 %R 10.2196/56022 %U https://www.jmir.org/2024/1/e56022 %U https://doi.org/10.2196/56022 %U http://www.ncbi.nlm.nih.gov/pubmed/39231422 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e48359 %T Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study %A Brands,Martijn R %A Haverman,Lotte %A Muis,Jelmer J %A Driessens,Mariëtte H E %A Meijer,Stephan %A van der Meer,Felix J M %A de Jong,Marianne %A van der Bom,Johanna G %A Cnossen,Marjon H %A Fijnvandraat,Karin %A Gouw,Samantha C %+ Department of Pediatric Hematology, Emma Children’s Hospital, Amsterdam UMC location University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, Netherlands, 31 020 566 2727, s.c.gouw@amsterdamumc.nl %K hemophilia %K telemedicine %K health records %K personal %K decision-making %K shared %K patient participation %D 2024 %7 3.9.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial. Objective: This study aims to assess patients’ and health care providers’ perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns. Methods: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities. Results: Participants expected a PHR would increase the transparency of health information, improve patients’ understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload. Conclusions: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition. %M 39226550 %R 10.2196/48359 %U https://humanfactors.jmir.org/2024/1/e48359 %U https://doi.org/10.2196/48359 %U http://www.ncbi.nlm.nih.gov/pubmed/39226550 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e59952 %T Decision Aid for Colectomy in Recurrent Diverticulitis: Development and Usability Study %A Hawkins,Alexander T %A Fa,Andrea %A Younan,Samuel A %A Ivatury,Srinivas Joga %A Bonnet,Kemberlee %A Schlundt,David %A Gordon,Elisa J %A Cavanaugh,Kerri L %+ Division of General Surgery, Section of Colon & Rectal Surgery, Vanderbilt University Medical Center, 1161 21st Ave South, Room D5248 MCN, Nashville, TN, 37232, United States, 1 615 343 4612, alex.hawkins@vumc.org %K design sprint %K diverticulitis %K decision aid %K shared decision-making %K colectomy %K diverticulitis %K decision-making %K diverticular diseases %K gastrointestinal diagnosis %K American %K America %K tools %K tool %K effectiveness %K surgeon %K patients %K patient %K communication %K synopsis %D 2024 %7 3.9.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Diverticular disease is a common gastrointestinal diagnosis with over 2.7 million clinic visits yearly. National guidelines from the American Society of Colon and Rectal Surgeons state that “the decision to recommend elective sigmoid colectomy after recovery from uncomplicated acute diverticulitis should be individualized.” However, tools to individualize this decision are lacking. Objective: This study aimed to develop an online educational decision aid (DA) to facilitate effective surgeon and patient communication about treatment options for recurrent left-sided diverticulitis. Methods: We used a modified design sprint methodology to create a prototype DA. We engaged a multidisciplinary team and adapted elements from the Ottawa Personal Decision Guide. We then iteratively refined the prototype by conducting a mixed methods assessment of content and usability testing, involving cognitive interviews with patients and surgeons. The findings informed the refinement of the DA. Further testing included an in-clinic feasibility review. Results: Over a 4-day in-person rapid design sprint, including patients, surgeons, and health communication experts, we developed a prototype of a diverticulitis DA, comprising an interactive website and handout with 3 discrete sections. The first section contains education about diverticulitis and treatment options. The second section clarifies the potential risks and benefits of both clinical treatment options (medical management vs colectomy). The third section invites patients to participate in a value clarification exercise. After navigating the DA, the patient prints a synopsis that they bring to their clinic appointment, which serves as a guide for shared decision-making. Conclusions: Design sprint methodology, emphasizing stakeholder co-design and complemented by extensive user testing, is an effective and efficient strategy to create a DA for patients living with recurrent diverticulitis facing critical treatment decisions. %M 39226090 %R 10.2196/59952 %U https://formative.jmir.org/2024/1/e59952 %U https://doi.org/10.2196/59952 %U http://www.ncbi.nlm.nih.gov/pubmed/39226090 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55717 %T Impacts of Clinical Decision Support Systems on the Relationship, Communication, and Shared Decision-Making Between Health Care Professionals and Patients: Multistakeholder Interview Study %A Funer,Florian %A Schneider,Diana %A Heyen,Nils B %A Aichinger,Heike %A Klausen,Andrea Diana %A Tinnemeyer,Sara %A Liedtke,Wenke %A Salloch,Sabine %A Bratan,Tanja %+ Competence Center Emerging Technologies, Fraunhofer Institute for Systems and Innovation Research ISI, Breslauer Straße 48, Karlsruhe, 76139, Germany, 49 0721 6809 58, diana.schneider@isi.fraunhofer.de %K clinical decision support system %K CDSS %K health care professionals %K patients %K relationships %K communication %K shared decision-making %K Germany %D 2024 %7 23.8.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Clinical decision support systems (CDSSs) are increasingly being introduced into various domains of health care. Little is known so far about the impact of such systems on the health care professional–patient relationship, and there is a lack of agreement about whether and how patients should be informed about the use of CDSSs. Objective: This study aims to explore, in an empirically informed manner, the potential implications for the health care professional–patient relationship and to underline the importance of this relationship when using CDSSs for both patients and future professionals. Methods: Using a methodological triangulation, 15 medical students and 12 trainee nurses were interviewed in semistructured interviews and 18 patients were involved in focus groups between April 2021 and April 2022. All participants came from Germany. Three examples of CDSSs covering different areas of health care (ie, surgery, nephrology, and intensive home care) were used as stimuli in the study to identify similarities and differences regarding the use of CDSSs in different fields of application. The interview and focus group transcripts were analyzed using a structured qualitative content analysis. Results: From the interviews and focus groups analyzed, three topics were identified that interdependently address the interactions between patients and health care professionals: (1) CDSSs and their impact on the roles of and requirements for health care professionals, (2) CDSSs and their impact on the relationship between health care professionals and patients (including communication requirements for shared decision-making), and (3) stakeholders’ expectations for patient education and information about CDSSs and their use. Conclusions: The results indicate that using CDSSs could restructure established power and decision-making relationships between (future) health care professionals and patients. In addition, respondents expected that the use of CDSSs would involve more communication, so they anticipated an increased time commitment. The results shed new light on the existing discourse by demonstrating that the anticipated impact of CDSSs on the health care professional–patient relationship appears to stem less from the function of a CDSS and more from its integration in the relationship. Therefore, the anticipated effects on the relationship between health care professionals and patients could be specifically addressed in patient information about the use of CDSSs. %M 39178023 %R 10.2196/55717 %U https://www.jmir.org/2024/1/e55717 %U https://doi.org/10.2196/55717 %U http://www.ncbi.nlm.nih.gov/pubmed/39178023 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 12 %N %P e50307 %T Characteristics of Existing Online Patient Navigation Interventions: Scoping Review %A Marsh,Meghan %A Shah,Syeda Rafia %A Munce,Sarah E P %A Perrier,Laure %A Lee,Tin-Suet Joan %A Colella,Tracey J F %A Kokorelias,Kristina Marie %+ Section of Geriatrics, Sinai Health and University Health Network, 600 University Avenue, Geriatrics Department, Toronto, ON, M5G1X5, Canada, 1 4165864800 ext 4573, kristina.kokorelias@sinaihealth.ca %K online %K patient navigation %K peer navigation %K patient navigation interventions %K online patient navigation interventions %K scoping review %K patient portals %K social care services %K online medical tools %K eHealth %K telehealth %K personal support %K social care %K patient navigation intervention %D 2024 %7 19.8.2024 %9 Review %J JMIR Med Inform %G English %X Background: Patient navigation interventions (PNIs) can provide personalized support and promote appropriate coordination or continuation of health and social care services. Online PNIs have demonstrated excellent potential for improving patient knowledge, transition readiness, self-efficacy, and use of services. However, the characteristics (ie, intervention type, mode of delivery, duration, frequency, outcomes and outcome measures, underlying theories or mechanisms of change of the intervention, and impact) of existing online PNIs to support the health and social needs of individuals with illness remain unclear. Objective: This scoping review of the existing literature aims to identify the characteristics of existing online PNIs reported in the literature. Methods: A scoping review based on the guidelines outlined in the Joanna Briggs Institute framework was conducted. A search for peer-reviewed literature published between 1989 and 2022 on online PNIs was conducted using MEDLINE, CINAHL, Embase, PsycInfo, and Cochrane Library databases. Two independent reviewers conducted 2 levels of screening. Data abstraction was conducted to outline key study characteristics (eg, study design, population, and intervention characteristics). The data were analyzed using descriptive statistics and qualitative content analysis. Results: A total of 100 studies met the inclusion criteria. Our findings indicate that a variety of study designs are used to describe and evaluate online PNIs, with literature being published between 2003 and 2022 in Western countries. Of these studies, 39 (39%) studies were randomized controlled trials. In addition, we noticed an increase in reported online PNIs since 2019. The majority of studies involved White females with a diagnosis of cancer and a lack of participants aged 70 years or older was observed. Most online PNIs provide support through navigation, self-management and lifestyle changes, counseling, coaching, education, or a combination of support. Variation was noted in terms of mode of delivery, duration, and frequency. Only a small number of studies described theoretical frameworks or change mechanisms to guide intervention. Conclusions: To our knowledge, this is the first review to comprehensively synthesize the existing literature on online PNIs, by focusing on the characteristics of interventions and studies in this area. Inconsistency in reporting the country of publication, population characteristics, duration and frequency of interventions, and a lack of the use of underlying theories and working mechanisms to inform intervention development, provide guidance for the reporting of future online PNIs. %M 39159443 %R 10.2196/50307 %U https://medinform.jmir.org/2024/1/e50307 %U https://doi.org/10.2196/50307 %U http://www.ncbi.nlm.nih.gov/pubmed/39159443 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e53509 %T Short-Term Effects of an eHealth Care Experiential Learning Program Among Patients With Type 2 Diabetes: Randomized Controlled Trial %A Cheng,Yu-Shan %A Lin,Cheng-Pei %A Chen,Lu-Yen Anny %A Hwang,Wei-Ren %A Lin,Yi-Chun %A Chen,Yu-Chi %+ Institute of Clinical Nursing, College of Nursing, National Yang Ming Chiao Tung University, No155, Section 2, Li-Nong Street, Beitou District, Taipei, 112, Taiwan, 886 228267093, ycchen2@nycu.edu.tw %K diabetes %K eHealth literacy %K eHealth %K patient engagement %K experiential learning theory %K experimental learning theory %K type 2 diabetes %K randomized controlled trial %D 2024 %7 16.8.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Type 2 diabetes is a chronic disease with a significant medical burden. eHealth care integrates medicine and technology to enhance the outcomes of such patients; however, adequate eHealth literacy (eHL) is necessary for that to happen. Fostering eHL is crucial for patients with diabetes to engage with eHealth care and receive quality care and timely support. Experiential learning theory can enhance patients’ eHL and skills to use eHealth care technology in their daily care. Objective: This study explored the effectiveness of an eHealth care experiential learning program in improving eHL, patient health engagement, and eHealth care use status among patients with type 2 diabetes in 3 months. Methods: In this randomized controlled trial, patients under case management services from various clinics in Taiwan were randomly assigned to either the intervention group receiving the 6-session eHealth care experiential learning program or the control group receiving the usual care. Data were collected using structured questionnaires at 3 time points: pretest, postintervention, and 3 months after the intervention. Descriptive data were presented using frequency distribution, percentage, mean, and SD. The outcomes were analyzed using a generalized estimating equation method by intention-to-treat analysis. Results: A total of 92 participants (46 in each group) were recruited in this study. Of these, 86 completed the course and follow-up evaluations with a mean age of 62.38 (SD 12.91) years. After completing the intervention, the intervention group had significantly higher posttest scores in eHL (β=19.94, SE 3.52; P<.001), patient health engagement (β=.28, SE 0.13; P=.04), and eHealth use (β=3.96, SE 0.42; P<.001) than the control group. Furthermore, the intervention group maintained these significant improvements in eHL (β=18.19, SE 3.82; P<.001) and eHealth use (β=3.87, SE 0.49; P<.001) after 3 months. Conclusions: Participating in the eHealth care experiential learning program resulted in significant improvements in eHL, patient health engagement, and eHealth use among patients with type 2 diabetes. Our interventional program can inform future clinical practice and policies to strengthen self-management skills and facilitate the use of health technology in caring for patients with chronic diseases. Trial Registration: ClinicalTrials.gov NCT05180604; https://clinicaltrials.gov/ct2/show/NCT05180604 %M 39150761 %R 10.2196/53509 %U https://www.jmir.org/2024/1/e53509 %U https://doi.org/10.2196/53509 %U http://www.ncbi.nlm.nih.gov/pubmed/39150761 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 7 %N %P e50978 %T Acceptance of a French e–Mental Health Information Website (CléPsy) for Families: A Web-Based Survey %A Landman,Benjamin %A Khoury,Elie %A Cohen,Alicia %A Trebossen,Vincent %A Michel,Alexandre %A Lefebvre,Aline %A Delorme,Richard %K mental health education %K children %K family %K child %K pediatrics %K pediatric %K mental health %K parent %K parents %K parenting %K psychiatry %K website %K acceptance %K patient education %K online information %K health information %K ease of use %K usefulness %K survey %K surveys %K user %K experience %K questionnaire %K questionnaires %K families %D 2024 %7 15.8.2024 %9 %J JMIR Pediatr Parent %G English %X Background: Childhood mental health issues concern a large amount of children worldwide and represent a major public health challenge. The lack of knowledge among parents and caregivers in this area hinders effective management. Empowering families enhances their ability to address their children’s difficulties, boosts health literacy, and promotes positive changes. However, seeking reliable mental health information remains challenging due to fear, stigma, and mistrust of the sources of information. Objective: This study evaluates the acceptance of a website, CléPsy, designed to provide reliable information and practical tools for families concerned about child mental health and parenting. Methods: This study examines user characteristics and assesses ease of use, usefulness, trustworthiness, and attitude toward using the website. Platform users were given access to a self-administered questionnaire by means of mailing lists, social networks, and posters between May and July 2022. Results: Findings indicate that the wide majority of the 317 responders agreed or somewhat agreed that the website made discussions about mental health easier with professionals (n=264, 83.3%) or with their relatives (n=260, 82.1%). According to the ANOVA, there was a significant effect between educational level and perceived trust (F6=3.03; P=.007) and between frequency of use and perceived usefulness (F2=4.85; P=.008). Conclusions: The study underlines the importance of user experience and design in web-based health information dissemination and emphasizes the need for accessible and evidence-based information. Although the study has limitations, it provides preliminary support for the acceptability and usefulness of the website. Future efforts should focus on inclusive co-construction with users and addressing the information needs of families from diverse cultural and educational backgrounds. %R 10.2196/50978 %U https://pediatrics.jmir.org/2024/1/e50978 %U https://doi.org/10.2196/50978 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55939 %T Evaluating the Efficacy of ChatGPT as a Patient Education Tool in Prostate Cancer: Multimetric Assessment %A Gibson,Damien %A Jackson,Stuart %A Shanmugasundaram,Ramesh %A Seth,Ishith %A Siu,Adrian %A Ahmadi,Nariman %A Kam,Jonathan %A Mehan,Nicholas %A Thanigasalam,Ruban %A Jeffery,Nicola %A Patel,Manish I %A Leslie,Scott %+ Department of Urology, Saint George Hospital, Gray St, Kogarah, 2217, Australia, 61 (02) 9113 1111, Damien.p.gibson@gmail.com %K prostate cancer %K patient education %K large language model %K ChatGPT %K AI language model %K multimetric assessment %K artificial intelligence %K AI %K AI chatbots %K health care professional %K health care professionals %K men %K man %K prostate %K cancer %K decision-making %K prostate specific %K antigen screening %K medical information %K natural language processing %K NLP %D 2024 %7 14.8.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Artificial intelligence (AI) chatbots, such as ChatGPT, have made significant progress. These chatbots, particularly popular among health care professionals and patients, are transforming patient education and disease experience with personalized information. Accurate, timely patient education is crucial for informed decision-making, especially regarding prostate-specific antigen screening and treatment options. However, the accuracy and reliability of AI chatbots’ medical information must be rigorously evaluated. Studies testing ChatGPT’s knowledge of prostate cancer are emerging, but there is a need for ongoing evaluation to ensure the quality and safety of information provided to patients. Objective: This study aims to evaluate the quality, accuracy, and readability of ChatGPT-4’s responses to common prostate cancer questions posed by patients. Methods: Overall, 8 questions were formulated with an inductive approach based on information topics in peer-reviewed literature and Google Trends data. Adapted versions of the Patient Education Materials Assessment Tool for AI (PEMAT-AI), Global Quality Score, and DISCERN-AI tools were used by 4 independent reviewers to assess the quality of the AI responses. The 8 AI outputs were judged by 7 expert urologists, using an assessment framework developed to assess accuracy, safety, appropriateness, actionability, and effectiveness. The AI responses’ readability was assessed using established algorithms (Flesch Reading Ease score, Gunning Fog Index, Flesch-Kincaid Grade Level, The Coleman-Liau Index, and Simple Measure of Gobbledygook [SMOG] Index). A brief tool (Reference Assessment AI [REF-AI]) was developed to analyze the references provided by AI outputs, assessing for reference hallucination, relevance, and quality of references. Results: The PEMAT-AI understandability score was very good (mean 79.44%, SD 10.44%), the DISCERN-AI rating was scored as “good” quality (mean 13.88, SD 0.93), and the Global Quality Score was high (mean 4.46/5, SD 0.50). Natural Language Assessment Tool for AI had pooled mean accuracy of 3.96 (SD 0.91), safety of 4.32 (SD 0.86), appropriateness of 4.45 (SD 0.81), actionability of 4.05 (SD 1.15), and effectiveness of 4.09 (SD 0.98). The readability algorithm consensus was “difficult to read” (Flesch Reading Ease score mean 45.97, SD 8.69; Gunning Fog Index mean 14.55, SD 4.79), averaging an 11th-grade reading level, equivalent to 15- to 17-year-olds (Flesch-Kincaid Grade Level mean 12.12, SD 4.34; The Coleman-Liau Index mean 12.75, SD 1.98; SMOG Index mean 11.06, SD 3.20). REF-AI identified 2 reference hallucinations, while the majority (28/30, 93%) of references appropriately supplemented the text. Most references (26/30, 86%) were from reputable government organizations, while a handful were direct citations from scientific literature. Conclusions: Our analysis found that ChatGPT-4 provides generally good responses to common prostate cancer queries, making it a potentially valuable tool for patient education in prostate cancer care. Objective quality assessment tools indicated that the natural language processing outputs were generally reliable and appropriate, but there is room for improvement. %M 39141904 %R 10.2196/55939 %U https://www.jmir.org/2024/1/e55939 %U https://doi.org/10.2196/55939 %U http://www.ncbi.nlm.nih.gov/pubmed/39141904 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e53993 %T Enhancing Patient Understanding of Laboratory Test Results: Systematic Review of Presentation Formats and Their Impact on Perception, Decision, Action, and Memory %A van der Mee,Frederieke A M %A Schaper,Fleur %A Jansen,Jesse %A Bons,Judith A P %A Meex,Steven J R %A Cals,Jochen W L %+ Department of Family Medicine, Care and Public Health Research Institute, Maastricht University, P. Debyeplein 1, Maastricht, 6229 HA, Netherlands, 31 883887059, frederieke.vandermee@maastrichtuniversity.nl %K electronic health record %K patient access to records %K patient portal %K laboratory test results %K clinical laboratory information systems %K health communication %K health informatics %K patient engagement %K patient involvement %D 2024 %7 12.8.2024 %9 Review %J J Med Internet Res %G English %X Background: Direct access of patients to their web-based patient portal, including laboratory test results, has become increasingly common. Numeric laboratory results can be challenging to interpret for patients, which may lead to anxiety, confusion, and unnecessary doctor consultations. Laboratory results can be presented in different formats, but there is limited evidence regarding how these presentation formats impact patients’ processing of the information. Objective: This study aims to synthesize the evidence on effective formats for presenting numeric laboratory test results with a focus on outcomes related to patients’ information processing, including affective perception, perceived magnitude, cognitive perception, perception of communication, decision, action, and memory. Methods: The search was conducted in 3 databases (PubMed, Web of Science, and Embase) from inception until May 31, 2023. We included quantitative, qualitative, and mixed methods articles describing or comparing formats for presenting diagnostic laboratory test results to patients. Two reviewers independently extracted and synthesized the characteristics of the articles and presentation formats used. The quality of the included articles was assessed by 2 independent reviewers using the Mixed Methods Appraisal Tool. Results: A total of 18 studies were included, which were heterogeneous in terms of study design and primary outcomes used. The quality of the articles ranged from poor to excellent. Most studies (n=16, 89%) used mock test results. The most frequently used presentation formats were numerical values with reference ranges (n=12), horizontal line bars with colored blocks (n=12), or a combination of horizontal line bars with numerical values (n=8). All studies examined perception as an outcome, while action and memory were studied in 1 and 3 articles, respectively. In general, participants’ satisfaction and usability were the highest when test results were presented using horizontal line bars with colored blocks. Adding reference ranges or personalized information (eg, goal ranges) further increased participants’ perception. Additionally, horizontal line bars significantly decreased participants’ tendency to search for information or to contact their physician, compared with numerical values with reference ranges. Conclusions: In this review, we synthesized available evidence on effective presentation formats for laboratory test results. The use of horizontal line bars with reference ranges or personalized goal ranges increased participants’ cognitive perception and perception of communication while decreasing participants’ tendency to contact their physicians. Action and memory were less frequently studied, so no conclusion could be drawn about a single preferred format regarding these outcomes. Therefore, the use of horizontal line bars with reference ranges or personalized goal ranges is recommended to enhance patients’ information processing of laboratory test results. Further research should focus on real-life settings and diverse presentation formats in combination with outcomes related to patients’ information processing. %M 39133906 %R 10.2196/53993 %U https://www.jmir.org/2024/1/e53993 %U https://doi.org/10.2196/53993 %U http://www.ncbi.nlm.nih.gov/pubmed/39133906 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e48584 %T Assessing Patient Trust in Automation in Health Care Systems: Within-Subjects Experimental Study %A Nare,Matthew %A Jurewicz,Katherina %+ School of Industrial Engineering and Management, Oklahoma State University, 329 Engineering North, Stillwater, OK, 74078, United States, 1 405 744 4167, katie.jurewicz@okstate.edu %K automation %K emergency department %K trust %K health care %K artificial intelligence %K emergency %K perceptions %K attitude %K opinions %K belief %K automated %K trust ratings %D 2024 %7 6.8.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Health care technology has the ability to change patient outcomes for the betterment when designed appropriately. Automation is becoming smarter and is increasingly being integrated into health care work systems. Objective: This study focuses on investigating trust between patients and an automated cardiac risk assessment tool (CRAT) in a simulated emergency department setting. Methods: A within-subjects experimental study was performed to investigate differences in automation modes for the CRAT: (1) no automation, (2) automation only, and (3) semiautomation. Participants were asked to enter their simulated symptoms for each scenario into the CRAT as instructed by the experimenter, and they would automatically be classified as high, medium, or low risk depending on the symptoms entered. Participants were asked to provide their trust ratings for each combination of risk classification and automation mode on a scale of 1 to 10 (1=absolutely no trust and 10=complete trust). Results: Results from this study indicate that the participants significantly trusted the semiautomation condition more compared to the automation-only condition (P=.002), and they trusted the no automation condition significantly more than the automation-only condition (P=.03). Additionally, participants significantly trusted the CRAT more in the high-severity scenario compared to the medium-severity scenario (P=.004). Conclusions: The findings from this study emphasize the importance of the human component of automation when designing automated technology in health care systems. Automation and artificially intelligent systems are becoming more prevalent in health care systems, and this work emphasizes the need to consider the human element when designing automation into care delivery. %M 39106096 %R 10.2196/48584 %U https://humanfactors.jmir.org/2024/1/e48584 %U https://doi.org/10.2196/48584 %U http://www.ncbi.nlm.nih.gov/pubmed/39106096 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e50749 %T Virtual Clinic Telehealth Abortion Services in the United States One Year After Dobbs: Landscape Review %A Koenig,Leah R %A Ko,Jennifer %A Upadhyay,Ushma D %+ Advancing New Standards in Reproductive Health, Department of Obstetrics, Gynecology & Reproductive Sciences, University of California, San Francisco, 1330 Broadway, Suite 1100, Oakland, CA, 94612, United States, 1 415 353 4626, ushma.upadhyay@ucsf.edu %K medication abortion %K telehealth %K virtual clinics %K abortion %K access %K policy %K health equity %D 2024 %7 5.8.2024 %9 Short Paper %J J Med Internet Res %G English %X Background: Telehealth abortion has taken on a vital role in maintaining abortion access since the Dobbs v. Jackson Women’s Health Organization Supreme Court decision. However, little remains known about the landscape of new telehealth-only virtual clinic abortion providers that have expanded since telehealth abortion first became widely available in the United States in 2021. Objective: This study aimed to (1) document the landscape of telehealth-only virtual clinic abortion care in the United States, (2) describe changes in the presence of virtual clinic abortion services between September 2022, following the Dobbs decision, and June 2023, and (3) identify structural factors that may perpetuate inequities in access to virtual clinic abortion care. Methods: We conducted a repeated cross-sectional study by reviewing web search results and abortion directories to identify virtual abortion clinics in September 2022 and June 2023 and described changes in the presence of virtual clinics between these 2 periods. In June 2023, we also described each virtual clinic’s policies, including states served, costs, patient age limits, insurance acceptance, financial assistance available, and gestational limits. Results: We documented 11 virtual clinics providing telehealth abortion care in 26 states and Washington DC in September 2022. By June 2023, 20 virtual clinics were providing services in 27 states and Washington DC. Most (n=16) offered care to minors, 8 provided care until 10 weeks of pregnancy, and median costs were US $259. In addition, 2 accepted private insurance and 1 accepted Medicaid, within a limited number of states. Most (n=16) had some form of financial assistance available. Conclusions: Virtual clinic abortion providers have proliferated since the Dobbs decision. We documented inequities in the availability of telehealth abortion care from virtual clinics, including age restrictions that exclude minors, gestational limits for care, and limited insurance and Medicaid acceptance. Notably, virtual clinic abortion care was not permitted in 11 states where in-person abortion is available. %M 39102679 %R 10.2196/50749 %U https://www.jmir.org/2024/1/e50749 %U https://doi.org/10.2196/50749 %U http://www.ncbi.nlm.nih.gov/pubmed/39102679 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55927 %T Benchmarking State-of-the-Art Large Language Models for Migraine Patient Education: Performance Comparison of Responses to Common Queries %A Li,Linger %A Li,Pengfei %A Wang,Kun %A Zhang,Liang %A Ji,Hongwei %A Zhao,Hongqin %+ Department of Neurology, The Affiliated Hospital of Qingdao University, No. 59 Haier Road, Qingdao, 266035, China, 86 13864873935, zhaohongq@qdu.edu.cn %K migraine %K large language models %K patient education %K ChatGPT %K Google Bard %K language model %K patient education %K education %K headache %K accuracy %K OpenAI %K AI %K artificial intelligence %K AI-assisted %K holistic %K migraine management %K management %D 2024 %7 23.7.2024 %9 Research Letter %J J Med Internet Res %G English %X This study assessed the potential of large language models (OpenAI’s ChatGPT 3.5 and 4.0, Google Bard, Meta Llama2, and Anthropic Claude2) in addressing 30 common migraine-related queries, providing a foundation to advance artificial intelligence–assisted patient education and insights for a holistic approach to migraine management. %M 38828692 %R 10.2196/55927 %U https://www.jmir.org/2024/1/e55927 %U https://doi.org/10.2196/55927 %U http://www.ncbi.nlm.nih.gov/pubmed/38828692 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e56996 %T Rehabilitation at Home With the Development of a Sustainable Model Placing the Person’s Needs and Environment at Heart: Protocol for a Multimethod Project %A Elf,Marie %A Norin,Lizette %A Meijering,Louise %A Pessah-Rasmussen,Hélène %A Suhonen,Riitta %A Zingmark,Magnus %A Kylén,Maya %+ School of Health and Welfare, Dalarna University, Högskolegatan 2, Falun, 79188, Sweden, 46 (0) 701917856, mel@du.se %K co-design %K early supported discharge %K home %K integrated care %K life space mobility %K multi-methods %K physical environment %K person-centered care %K social environment %K stroke rehabilitation %D 2024 %7 23.7.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Each year, more than 1.5 million people in Europe have a stroke, and many experience disabilities leading to activity and participation restrictions. Home-based rehabilitation is the recommended approach for stroke rehabilitation, in line with the international shift to integrated care. Despite this, rehabilitation often focuses on the person’s physical functions, not the whole life situation and opportunities to live an active life. Given that rehabilitation today is often provided in the person’s home, there is a need to develop new models that consider the rehabilitation process as situated in the everyday living environment of persons with stroke. This project is grounded in experiences from our ongoing research, where we study the importance of the home environment for health and participation among persons with stroke, rehabilitated at home. This research has shown unmet needs, which lead to suboptimal rehabilitation outcomes. There is a need for studies on how to use environmental resources to optimize stroke rehabilitation in the home setting. Objective: The overarching objective of the project is to develop a new practice model for rehabilitation where the needs of the person are the starting point and where the environment is considered. Methods: The project will be conducted in partnership with persons with stroke, significant others, health care professionals, and care managers. Results from a literature review will form the base for interviews with the stakeholders, followed by co-designing workshops aiming to create a new practice model. Focus groups will be held to refine the outcome of the workshops to a practice model. Results: This 4-year project commenced in January 2023 and will continue until December 2026. The results of the literature review are, as of April 2024, currently being analyzed. The ethics application for the interviews and co-design phase was approved in October 2023 and data collection is ongoing during spring 2024. We aim to develop a practice model with stakeholders and refine it together with care managers and decision makers. The outcome is a new practice model and implementation plan, which will be achieved in autumn 2026. Conclusions: The project contributes with a prominent missing puzzle to optimize the rehabilitation process by adding a strong focus on user engagement combined with integrating different aspects of the environment. The goal is to improve quality of life and increase reintegration in society for the large group of people living with the aftermath of a stroke. By co-designing with multiple stakeholders, we expect the model to be feasible and sustainable. The knowledge from the project will also contribute to an increased awareness of the importance of the physical environment for sustainable health care. The findings will lay the foundation for future upscaling initiatives. International Registered Report Identifier (IRRID): DERR1-10.2196/56996 %M 39042448 %R 10.2196/56996 %U https://www.researchprotocols.org/2024/1/e56996 %U https://doi.org/10.2196/56996 %U http://www.ncbi.nlm.nih.gov/pubmed/39042448 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e54129 %T Evaluating the Preliminary Effectiveness of the Person-Centered Care Assessment Tool (PCC-AT) in Zambian Health Facilities: Protocol for a Mixed Methods Cross-Sectional Study %A Posner,Jessica %A Ndhlovu,Adamson Paxon %A Musangulule,Jemmy Mushinka %A Duffy,Malia %A Casella,Amy %A Madevu-Matson,Caitlin %A Davis,Nicole %A Sharer,Melissa %+ International Division, JSI, 2733 Crystal Dr, Arlington, VA, 22202, United States, 1 2029573477, jessica_posner@jsi.com %K person-centered care %K HIV %K action plans %K preliminary %K person-centered care assessment tool %K PCC-AT %K assessment tool %K Zambia %K health facility %K exploratory study %K HIV treatment %K inequities %K framework %K practitioners %K health services %D 2024 %7 23.7.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Person-centered care (PCC) within HIV treatment services has demonstrated potential to overcome inequities in HIV service access while improving treatment outcomes. Despite PCC being widely considered a best practice, no consensus exists on its assessment and measurement. This study in Zambia builds upon previous research that informed development of a framework for PCC and a PCC assessment tool (PCC-AT). Objective: This mixed methods study aims to examine the preliminary effectiveness of the PCC-AT through assessing the association between client HIV service delivery indicators and facility PCC-AT scores. We hypothesize that facilities with higher PCC-AT scores will demonstrate more favorable HIV treatment continuity, viral load (VL) coverage, and viral suppression in comparison to those of facilities with lower PCC-AT scores. Methods: We will implement the PCC-AT at 30 randomly selected health facilities in the Copperbelt and Central provinces of Zambia. For each study facility, data will be gathered from 3 sources: (1) PCC-AT scores, (2) PCC-AT action plans, and (3) facility characteristics, along with service delivery data. Quantitative analysis, using STATA, will include descriptive statistics on the PCC-AT results stratified by facility characteristics. Cross-tabulations and/or regression analysis will be used to determine associations between scores and treatment continuity, VL coverage, and/or viral suppression. Qualitative data will be collected via action planning, with detailed notes collected and recorded into an action plan template. Descriptive coding and emerging themes will be analyzed with NVivo software. Results: As of May 2024, we enrolled 29 facilities in the study and data analysis from the key informant interviews is currently underway. Results are expected to be published by September 2024. Conclusions: Assessment and measurement of PCC within HIV treatment settings is a novel approach that offers HIV treatment practitioners the opportunity to examine their services and identify actions to improve PCC performance. Study results and the PCC-AT will be broadly disseminated for use among all project sites in Zambia as well as other HIV treatment programs, in addition to making the PCC-AT publicly available to global HIV practitioners. International Registered Report Identifier (IRRID): DERR1-10.2196/54129 %M 39042423 %R 10.2196/54129 %U https://www.researchprotocols.org/2024/1/e54129 %U https://doi.org/10.2196/54129 %U http://www.ncbi.nlm.nih.gov/pubmed/39042423 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 7 %N %P e51520 %T Social Media Programs for Outreach and Recruitment Supporting Aging and Alzheimer Disease and Related Dementias Research: Longitudinal Descriptive Study %A Teano,Anthony L %A Scott,Ashley %A Gipson,Cassandra %A Albert,Marilyn %A Pettigrew,Corinne %+ Department of Neurology, Johns Hopkins University School of Medicine, 550 N. Broadway St., Suite 415, Baltimore, MD, 21205, United States, 1 410 614 0363, cpettigrew@jhmi.edu %K education %K social media %K outreach %K recruitment %K Alzheimer’s disease %K Alzheimer disease %D 2024 %7 9.7.2024 %9 Original Paper %J JMIR Aging %G English %X Background: Social media may be a useful method for research centers to deliver health messages, increase their visibility in the local community, and recruit study participants. Sharing examples of social media–based community outreach and educational programs, and evaluating their outcomes in this setting, is important for understanding whether these efforts have a measurable impact. Objective: The aim of this study is to describe one center’s social media activities for community education on topics related to aging, memory loss, and Alzheimer disease and related dementias, and provide metrics related to recruitment into clinical research studies. Methods: Several social media platforms were used, including Facebook, X (formerly Twitter), and YouTube. Objective assessments quantified monthly, based on each platform’s native dashboard, included the number of followers, number of posts, post reach and engagement, post impressions, and video views. The number of participants volunteering for research during this period was additionally tracked using a secure database. Educational material posted to social media most frequently included content developed by center staff, content from partner organizations, and news articles or resources featuring center researchers. Multiple educational programs were developed, including social media series, web-based talks, Twitter chats, and webinars. In more recent years, Facebook content was occasionally boosted to increase visibility in the local geographical region. Results: Up to 4 years of page metrics demonstrated continuing growth in reaching social media audiences, as indicated by increases over time in the numbers of likes or followers on Facebook and X/Twitter and views of YouTube videos (growth trajectories). While Facebook reach and X/Twitter impression rates were reasonable, Facebook engagement rates were more modest. Months that included boosted Facebook posts resulted in a greater change in page followers and page likes, and higher reach and engagement rates (all P≤.002). Recruitment of participants into center-affiliated research studies increased during this time frame, particularly in response to boosted Facebook posts. Conclusions: These data demonstrate that social media activities can provide meaningful community educational opportunities focused on Alzheimer disease and related dementias and have a measurable impact on the recruitment of participants into research studies. Additionally, this study highlights the importance of tracking outreach program outcomes for evaluating return on investment. %M 38981112 %R 10.2196/51520 %U https://aging.jmir.org/2024/1/e51520 %U https://doi.org/10.2196/51520 %U http://www.ncbi.nlm.nih.gov/pubmed/38981112 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e47785 %T Interactive Health Technology Tool for Kidney Living Donor Assessment to Standardize the Informed Consent Process: Usability and Qualitative Content Analysis %A Ortiz,Fernanda %A Grasberger,Juulia %A Ekstrand,Agneta %A Helanterä,Ilkka %A Giunti,Guido %+ Abdominal Center–Nephrology, Helsinki University Hospital, Haartmaninkatu 4, Helsinki, 00130, Finland, 358 504270795, fernanda.ortiz@hus.fi %K eHealth %K kidney living donor %K informed consent %K telemedicine %K process standardization %K kidney %K donor %K tool %K usability %K psychological impact %K utility %K smartphone %K coping %K surgery %D 2024 %7 9.7.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Kidney living donation carries risks, yet standardized information provision regarding nephrectomy risks and psychological impacts for candidates remains lacking. Objective: This study assesses the benefit of interactive health technology in improving the informed consent process for kidney living donation. Methods: The Kidney Hub institutional open portal offers comprehensive information on kidney disease and donation. Individuals willing to start the kidney living donation process at Helsinki University Hospital (January 2019-January 2022) were invited to use the patient-tailored digital care path (Living Donor Digital Care Path) included in the Kidney Hub. This platform provides detailed donation process information and facilitates communication between health care professionals and patients. eHealth literacy was evaluated via the eHealth Literacy Scale (eHEALS), usability with the System Usability Scale (SUS), and system utility through Likert-scale surveys with scores of 1-5. Qualitative content analysis addressed an open-ended question. Results: The Kidney Hub portal received over 8000 monthly visits, including to its sections on donation benefits (n=1629 views) and impact on donors’ lives (n=4850 views). Of 127 living kidney donation candidates, 7 did not use Living Donor Digital Care Path. Users’ ages ranged from 20 to 79 years, and they exchanged over 3500 messages. A total of 74 living donor candidates participated in the survey. Female candidates more commonly searched the internet about kidney donation (n=79 female candidates vs n=48 male candidates; P=.04). The mean eHEALS score correlated with internet use for health decisions (r=0.45; P<.001) and its importance (r=0.40; P=.01). Participants found that the Living Donor Digital Care Path was technically satisfactory (mean SUS score 4.4, SD 0.54) and useful but not pivotal in donation decision-making. Concerns focused on postsurgery coping for donors and recipients. Conclusions: Telemedicine effectively educates living kidney donor candidates on the donation process. The Living Donor Digital Care Path serves as a valuable eHealth tool, aiding clinicians in standardizing steps toward informed consent. Trial Registration: ClinicalTrials.gov NCT04791670; https://clinicaltrials.gov/study/NCT04791670 International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-051166 %M 38981119 %R 10.2196/47785 %U https://formative.jmir.org/2024/1/e47785 %U https://doi.org/10.2196/47785 %U http://www.ncbi.nlm.nih.gov/pubmed/38981119 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e50086 %T Gamification Approach to Provide Support About the Deferral Experience in Blood Donation: Design and Feasibility Study %A Espinoza Chamorro,Roberto %A Santos,Luciano H O %A Mori,Yukiko %A Liu,Chang %A Yamamoto,Goshiro %A Kuroda,Tomohiro %+ Graduate School of Informatics, Kyoto University, 36-1 Yoshida-Honmachi, Sakyo-ku, Kyoto, 606-8501, Japan, 81 075 753 7531, rech91@outlook.com %K blood donation %K deferral experience %K Theory of Planned Behavior %K Self-Determination Theory %K gamification %K ICT design %K motivation %K patient education %K prototype %K feasibility %D 2024 %7 14.6.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Multiple studies have examined the impact of deferral on the motivation of prospective blood donors, proposing various policies and strategies to support individuals who undergo this experience. However, existing information and communications technology systems focused on blood donation have not yet integrated these ideas or provided options to assist with the deferral experience. Objective: This study aims to propose an initial gamified design aimed at mitigating the impact of the deferral experience by addressing the drivers of awareness and knowledge, interaction and validation, and motivation. Additionally, the study explores the feasibility of implementing such a system for potential users. Methods: We conducted a literature review focusing on the dynamics of motivation and intention related to blood donation, as well as the deferral situation and its impact on citizens. Through this review, we identified weak donor identity, lack of knowledge, and reduced motivation as key factors requiring support from appropriate interventions. These factors were then defined as our key drivers. Taking these into account, we proposed a gamification approach that incorporates concepts from the MDA framework. The aim is to stimulate the aforementioned drivers and expand the concept of contribution and identity in blood donation. For a preliminary evaluation, we designed a prototype to collect feedback on usability, usefulness, and interest regarding a potential implementation of our proposed gamification approach. Results: Among the participants, a total of 11 citizens interacted with the app and provided feedback through our survey. They indicated that interacting with the app was relatively easy, with an average score of 4.13 out of 5 when considering the 11 tasks of interaction. The SUS results yielded a final average score of 70.91 from the participants’ answers. Positive responses were received when participants were asked about liking the concept of the app (3.82), being likely to download it (3.55), and being likely to recommend it to others (3.64). Participants expressed positivity about the implementation of the design but also highlighted current shortcomings and suggested possible improvements in both functionality and usability. Conclusions: Although deferral is a common issue in blood donation, there is a missed opportunity in existing ICT services regarding how to effectively handle such experiences. Our proposed design and implementation seem to have captured the interest of prospective users due to its perceived positive usefulness and potential. However, further confirmation is needed. Improving the design of activities that currently rely heavily on extrinsic motivation elements and integrating more social components to create an enhanced activity loop for intrinsic motivation could further increase the value of the proposed project. Future research could involve conducting a more specialized and longitudinal design evaluation with a larger sample size. %M 38875005 %R 10.2196/50086 %U https://humanfactors.jmir.org/2024/1/e50086 %U https://doi.org/10.2196/50086 %U http://www.ncbi.nlm.nih.gov/pubmed/38875005 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e50087 %T YouTube as a Source of Patient Information on External Cephalic Version: Cross-Sectional Study %A van Dijk,Merle R %A van der Marel,Anne-Fleur %A van Rheenen-Flach,Leonie E %A Ganzevoort,Wessel %A Moll,Etelka %A Scheele,Fedde %A Velzel,Joost %+ Department of Obstetrics and Gynecology, Onze Lieve Vrouwen Gasthuis, Oosterpark 9, Amsterdam, 1061AC, Netherlands, 31 0205999111, m.r.vandijk@olvg.nl %K YouTube %K ECV %K external cephalic version %K breech %K education %K video %K cesarean %K health education %K childbirth %K patient information %K cross-sectional study %K cesarean delivery %K implementation %K usefulness %K medical information %K pregnancy %K pregnant women %K engagement %D 2024 %7 6.6.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: With the global increase of cesarean deliveries, breech presentation is the third indication for elective cesarean delivery. Implementation of external cephalic version (ECV), in which the position of the baby is manipulated externally to prevent breech presentation at term, remains suboptimal. Increasing knowledge for caretakers and patients is beneficial in the uptake of ECV implementation. In recent decades, the internet has become the most important source of information for both patients and health care professionals. However, the use and availability of the internet also bring about concerns since the information is often not regulated or reviewed. Information needs to be understandable, correct, and easily obtainable for the patient. Owing to its global reach, YouTube has great potential to both hinder and support spreading medical information and can therefore be used as a tool for shared decision-making. Objective: The objective of this study was to investigate the available information on YouTube about ECV and assess the quality and usefulness of the information in the videos. Methods: A YouTube search was performed with five search terms and the first 35 results were selected for analysis. A quality assessment scale was developed to quantify the accuracy of medical information of each video. The main outcome measure was the usefulness score, dividing the videos into useful, slightly useful, and not useful categories. The source of upload was divided into five subcategories and two broad categories of medical or nonmedical. Secondary outcomes included audience engagement, misinformation, and encouraging or discouraging ECV. Results: Among the 70 videos, only 14% (n=10) were defined as useful. Every useful video was uploaded by educational channels or health care professionals and 80% (8/10) were derived from a medical source. Over half of the not useful videos were uploaded by birth attendants and vloggers. Videos uploaded by birth attendants scored the highest on audience engagement. The presence of misinformation was low across all groups. Two-thirds of the vloggers encouraged ECV to their viewers. Conclusions: A minor percentage of videos about ECV on YouTube are considered useful. Vloggers often encourage their audience to opt for ECV. Videos with higher audience engagement had a lower usefulness score compared to videos with lower audience engagement. Sources from medically accurate videos should cooperate with sources with high audience engagement to contribute to the uptake of ECV by creating more awareness and a positive attitude of the procedure, thereby lowering the chance for a cesarean delivery due to breech presentation at term. %M 38843520 %R 10.2196/50087 %U https://formative.jmir.org/2024/1/e50087 %U https://doi.org/10.2196/50087 %U http://www.ncbi.nlm.nih.gov/pubmed/38843520 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e52251 %T Development of a Digital Patient Assistant for the Management of Cyclic Vomiting Syndrome: Patient-Centric Design Study %A Narang,Gaurav %A Chen,Yaozhu J %A Wedel,Nicole %A Wu,Melody %A Luo,Michelle %A Atreja,Ashish %+ Rx.Health, 21 Penn Plaza, 368 9th Avenue, New York, NY, 10001, United States, 1 6469699939, gnarang@commure.com %K cyclic vomiting syndrome %K vomiting %K vomit %K emetic %K emesis %K gut %K GI %K gastrointestinal %K internal medicine %K prototype %K prototypes %K iterative %K self-management %K disease management %K gut-brain interaction %K gut-brain %K artificial intelligence %K digital patient assistant %K assistant %K assistants %K design thinking %K design %K patient-centric %K patient centred %K patient centered %K patient-centric approach %K System Usability Scale %K symptom tracking %K digital health solution %K user experience %K usability %K symptom %K symptoms %K tracking %K monitoring %K participatory %K co-design digital health technology %K patient assistance %K patient experience %K mobile phone %D 2024 %7 6.6.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Cyclic vomiting syndrome (CVS) is an enigmatic and debilitating disorder of gut-brain interaction that is characterized by recurrent episodes of severe vomiting and nausea. It significantly impairs patients’ quality of life and can lead to frequent medical visits and substantial health care costs. The diagnosis for CVS is often protracted and complex, primarily due to its exclusionary diagnosis nature and the lack of specific biomarkers. This typically leads to a considerable delay in accurate diagnosis, contributing to increased patient morbidity. Additionally, the absence of approved therapies for CVS worsens patient hardship and reflects the urgent need for innovative, patient-centric solutions to improve CVS management. Objective: We aim to develop a digital patient assistant (DPA) for patients with CVS to address their unique needs, and iteratively enhance the technical features and user experience on the initial DPA versions. Methods: The development of the DPA for CVS used a design thinking approach, prioritizing user needs. A literature review and Patient Advisory Board shaped the initial prototype, focusing on diagnostic support and symptom tracking. Iterative development, informed by the design thinking approach and feedback from patients with CVS and caregivers through interviews and smartphone testing, led to significant enhancements in user interaction and artificial intelligence integration. The final DPA’s effectiveness was validated using the System Usability Scale and feedback questions, ensuring it met the specific needs of the CVS community. Results: The DPA developed for CVS integrates an introductory bot, daily and weekly check-in bots, and a knowledge hub, all accessible via a patient dashboard. This multicomponent solution effectively addresses key unmet needs in CVS management: efficient symptom and impacts tracking, access to comprehensive disease information, and a digital health platform for disease management. Significant improvements, based on user feedback, include the implementation of artificial intelligence features like intent recognition and data syncing, enhancing the bot interaction and reducing the burden on patients. The inclusion of the knowledge hub provides educational resources, contributing to better disease understanding and management. The DPA achieved a System Usability Scale score of 80 out of 100, indicating high ease of use and relevance. Patient feedback highlighted the DPA’s potential in disease management and suggested further applications, such as integration into health care provider recommendations for patients with suspected or confirmed CVS. This positive response underscores the DPA’s role in enhancing patient engagement and disease management through a patient-centered digital solution. Conclusions: The development of this DPA for patients with CVS, via an iterative design thinking approach, offers a patient-centric solution for disease management. The DPA development framework may also serve to guide future patient digital support and research scenarios. %M 38842924 %R 10.2196/52251 %U https://formative.jmir.org/2024/1/e52251 %U https://doi.org/10.2196/52251 %U http://www.ncbi.nlm.nih.gov/pubmed/38842924 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 7 %N %P e57849 %T Designing Child Nutrition Interventions to Engage Fathers: Qualitative Analysis of Interviews and Co-Design Workshops %A So,Jeffrey Tsz Hei %A Nambiar,Smita %A Byrne,Rebecca %A Gallegos,Danielle %A Baxter,Kimberley A %+ Centre for Childhood Nutrition Research, Faculty of Health, Queensland University of Technology, 62 Graham Street, South Brisbane, Brisbane, 4101, Australia, 61 73069 7308, jeffrey.so@hdr.qut.edu.au %K co-design %K fathers %K child nutrition %K child feeding %K intervention design %K digital delivery %K parenting %K participatory %K videoconference %K communication technology %D 2024 %7 30.5.2024 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Fathers play a pivotal role in parenting and child feeding, but they remain underrepresented in intervention studies, especially those focused on disadvantaged populations. A better understanding of fathers’ experiences and needs regarding support access and child nutrition information in the context of disadvantage can inform future interventions engaging fathers. Objective: This study aims to explore fathers’ experiences; perceived enablers; and barriers to accessing support and information related to parenting, child feeding, and nutrition and to co-design principles for tailoring child nutrition interventions to engage fathers. Methods: Australian fathers of children aged 6 months to 5 years with lived experience of disadvantage participated in semistructured interviews and co-design workshops, primarily conducted via videoconference. Creative analogies were used to guide the ideation process in the workshops. Results: A total of 25 interviews and 3 workshops (n=10 participants) were conducted, with data analyzed using reflexive thematic analysis and the Capability, Opportunity, and Motivation–Behavior model. The interview data illuminated factors influencing fathers’ initiation in seeking support for parenting, child feeding, and nutrition, including their experiences. It highlighted fathers’ diverse information needs and the importance of an inclusive environment and encouragement. Enablers and barriers in accessing support related to parenting and child nutrition were identified at the individual (eg, personal goals and resource constraints), interpersonal (family support and false beliefs about men’s caregiving role), organizational (inadequate fathering support), and systemic levels (father-inclusive practice and policy). Digital data collection methods enabled Australia-wide participation, overcoming work and capacity barriers. Videoconferencing technology was effectively used to engage fathers creatively. Key principles for engaging fathers were co-designed from the workshop data. Interventions and resources need to be father specific, child centered, and culturally appropriate; promote empowerment and collaboration; and provide actionable and accessible strategies on the what and how of child feeding. Fathers preferred multiformat implementation, which harnesses technology-based design (eg, websites and mobile apps) and gamification. It should be tailored to the child’s age and targeted at fathers using comprehensive promotion strategies. Conclusions: Fathers faced barriers to accessing support and information related to parenting and feeding that may not adequately address their needs. Future interventions could integrate the co-designed principles to engage fathers effectively. These findings have implications for health service delivery and policy development, promoting father-inclusive practice. %M 38815260 %R 10.2196/57849 %U https://pediatrics.jmir.org/2024/1/e57849 %U https://doi.org/10.2196/57849 %U http://www.ncbi.nlm.nih.gov/pubmed/38815260 %0 Journal Article %@ 2561-7605 %I %V 7 %N %P e53098 %T Combating Barriers to the Development of a Patient-Oriented Frailty Website %A Greeley,Brian %A Chung,Sally Seohyeon %A Graves,Lorraine %A Song,Xiaowei %K frailty %K frailty website %K patient-oriented assessment %K community-dwelling older adults %K internet security %K privacy %K barrier %K barriers %K development %K implementation %K patient-oriented %K internet %K virtual health resource %K community dwelling %K older adult %K older adults %K health care professional %K caregiver %K caregivers %K technology %K real-time %K monitoring %K aging %K ageing %D 2024 %7 28.5.2024 %9 %J JMIR Aging %G English %X This viewpoint article, which represents the opinions of the authors, discusses the barriers to developing a patient-oriented frailty website and potential solutions. A patient-oriented frailty website is a health resource where community-dwelling older adults can navigate to and answer a series of health-related questions to receive a frailty score and health summary. This information could then be shared with health care professionals to help with the understanding of health status prior to acute illness, as well as to screen and identify older adult individuals for frailty. Our viewpoints were drawn from 2 discussion sessions that included caregivers and care providers, as well as community-dwelling older adults. We found that barriers to a patient-oriented frailty website include, but are not limited to, its inherent restrictiveness to frail persons, concerns over data privacy, time commitment worries, and the need for health and lifestyle resources in addition to an assessment summary. For each barrier, we discuss potential solutions and caveats to those solutions, including assistance from caregivers, hosting the website on a trusted source, reducing the number of health questions that need to be answered, and providing resources tailored to each users’ responses, respectively. In addition to screening and identifying frail older adults, a patient-oriented frailty website will help promote healthy aging in nonfrail adults, encourage aging in place, support real-time monitoring, and enable personalized and preventative care. %R 10.2196/53098 %U https://aging.jmir.org/2024/1/e53098 %U https://doi.org/10.2196/53098 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e53872 %T Assessing the Content and Effect of Web-Based Decision Aids for Postmastectomy Breast Reconstruction: Systematic Review and Meta-Analysis of Randomized Controlled Trials %A Yu,Lin %A Gong,Jianmei %A Sun,Xiaoting %A Zang,Min %A Liu,Lei %A Yu,Shengmiao %+ School of Nursing, Liaoning University of Chinese Traditional Medicine, No.79 Chongshan Dong Road, Shenyang, 110000, China, 86 17824909908, liulei0428@sina.com %K decision aids %K internet %K postmastectomy breast reconstruction %K decision conflicts %K mobile phone %D 2024 %7 27.5.2024 %9 Review %J J Med Internet Res %G English %X Background: Web-based decision aids have been shown to have a positive effect when used to improve the quality of decision-making for women facing postmastectomy breast reconstruction (PMBR). However, the existing findings regarding these interventions are still incongruent, and the overall effect is unclear. Objective: We aimed to assess the content of web-based decision aids and its impact on decision-related outcomes (ie, decision conflict, decision regret, informed choice, and knowledge), psychological-related outcomes (ie, satisfaction and anxiety), and surgical decision-making in women facing PMBR. Methods: This systematic review and meta-analysis followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. A total of 6 databases, PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Web of Science Core Collection, were searched starting at the time of establishment of the databases to May 2023, and an updated search was conducted on April 1, 2024. MeSH (Medical Subject Headings) terms and text words were used. The Cochrane Risk of Bias Tool for randomized controlled trials was used to assess the risk of bias. The certainty of evidence was assessed using the Grading of Recommendations, Assessment, Development, and Evaluation approach. Results: In total, 7 studies included 579 women and were published between 2008 and 2023, and the sample size in each study ranged from 26 to 222. The results showed that web-based decision aids used audio and video to present the pros and cons of PMBR versus no PMBR, implants versus flaps, and immediate versus delayed PMBR and the appearance and feel of the PMBR results and the expected recovery time with photographs of actual patients. Web-based decision aids help improve PMBR knowledge, decisional conflict (mean difference [MD]=–5.43, 95% CI –8.87 to –1.99; P=.002), and satisfaction (standardized MD=0.48, 95% CI 0.00 to 0.95; P=.05) but have no effect on informed choice (MD=–2.80, 95% CI –8.54 to 2.94; P=.34), decision regret (MD=–1.55, 95% CI –6.00 to 2.90 P=.49), or anxiety (standardized MD=0.04, 95% CI –0.50 to 0.58; P=.88). The overall Grading of Recommendations, Assessment, Development, and Evaluation quality of the evidence was low. Conclusions: The findings suggest that the web-based decision aids provide a modern, low-cost, and high dissemination rate effective method to promote the improved quality of decision-making in women undergoing PMBR. Trial Registration: PROSPERO CRD42023450496; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=450496 %M 38801766 %R 10.2196/53872 %U https://www.jmir.org/2024/1/e53872 %U https://doi.org/10.2196/53872 %U http://www.ncbi.nlm.nih.gov/pubmed/38801766 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e47484 %T Understanding Symptom Self-Monitoring Needs Among Postpartum Black Patients: Qualitative Interview Study %A Benda,Natalie %A Woode,Sydney %A Niño de Rivera,Stephanie %A Kalish,Robin B %A Riley,Laura E %A Hermann,Alison %A Masterson Creber,Ruth %A Costa Pimentel,Eric %A Ancker,Jessica S %+ School of Nursing, Columbia University, 560 West 168th Street, New York, NY, 10032, United States, 1 212 305 9547, nb3115@cumc.columbia.edu %K maternal mortality %K patient-reported outcomes %K patient-reported outcome %K health equity %K qualitative research %K mobile health %K mHealth %K qualitative %K postpartum %K postnatal %K maternity %K maternal %K Black %K women’s health %K ethnic %K design need %K mortality %K death %K decision support %K information need %K informational need %K obstetric %K obstetrics %K mental health %K mobile phone %D 2024 %7 26.4.2024 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 38669066 %R 10.2196/47484 %U https://www.jmir.org/2024/1/e47484 %U https://doi.org/10.2196/47484 %U http://www.ncbi.nlm.nih.gov/pubmed/38669066 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e55847 %T Leveraging Large Language Models for Improved Patient Access and Self-Management: Assessor-Blinded Comparison Between Expert- and AI-Generated Content %A Lv,Xiaolei %A Zhang,Xiaomeng %A Li,Yuan %A Ding,Xinxin %A Lai,Hongchang %A Shi,Junyu %+ Department of Oral and Maxillofacial Implantology, Shanghai PerioImplant Innovation Center, Shanghai Ninth People's Hospital, Shanghai Jiao Tong University School of Medicine, Quxi Road No 500, Shanghai, 200011, China, 86 21 23271699 ext 5298, sakyamuni_jin@163.com %K large language model %K artificial intelligence %K public oral health %K health care access %K patient education %D 2024 %7 25.4.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: While large language models (LLMs) such as ChatGPT and Google Bard have shown significant promise in various fields, their broader impact on enhancing patient health care access and quality, particularly in specialized domains such as oral health, requires comprehensive evaluation. Objective: This study aims to assess the effectiveness of Google Bard, ChatGPT-3.5, and ChatGPT-4 in offering recommendations for common oral health issues, benchmarked against responses from human dental experts. Methods: This comparative analysis used 40 questions derived from patient surveys on prevalent oral diseases, which were executed in a simulated clinical environment. Responses, obtained from both human experts and LLMs, were subject to a blinded evaluation process by experienced dentists and lay users, focusing on readability, appropriateness, harmlessness, comprehensiveness, intent capture, and helpfulness. Additionally, the stability of artificial intelligence responses was also assessed by submitting each question 3 times under consistent conditions. Results: Google Bard excelled in readability but lagged in appropriateness when compared to human experts (mean 8.51, SD 0.37 vs mean 9.60, SD 0.33; P=.03). ChatGPT-3.5 and ChatGPT-4, however, performed comparably with human experts in terms of appropriateness (mean 8.96, SD 0.35 and mean 9.34, SD 0.47, respectively), with ChatGPT-4 demonstrating the highest stability and reliability. Furthermore, all 3 LLMs received superior harmlessness scores comparable to human experts, with lay users finding minimal differences in helpfulness and intent capture between the artificial intelligence models and human responses. Conclusions: LLMs, particularly ChatGPT-4, show potential in oral health care, providing patient-centric information for enhancing patient education and clinical care. The observed performance variations underscore the need for ongoing refinement and ethical considerations in health care settings. Future research focuses on developing strategies for the safe integration of LLMs in health care settings. %M 38663010 %R 10.2196/55847 %U https://www.jmir.org/2024/1/e55847 %U https://doi.org/10.2196/55847 %U http://www.ncbi.nlm.nih.gov/pubmed/38663010 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e48793 %T User-Centered Development of a Patient Decision Aid for Choice of Early Abortion Method: Multi-Cycle Mixed Methods Study %A Wahl,Kate J %A Brooks,Melissa %A Trenaman,Logan %A Desjardins-Lorimer,Kirsten %A Bell,Carolyn M %A Chokmorova,Nazgul %A Segall,Romy %A Syring,Janelle %A Williams,Aleyah %A Li,Linda C %A Norman,Wendy V %A Munro,Sarah %+ Department of Obstetrics and Gynecology, University of British Columbia, 4500 Oak Street, Vancouver, BC, V6H 3N1, Canada, 1 4165231923, kate.wahl@cw.bc.ca %K family planning %K abortion %K shared decision-making %K patient decision aid %K qualitative %K evaluation %K Canada %K health equity %D 2024 %7 16.4.2024 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 38625731 %R 10.2196/48793 %U https://www.jmir.org/2024/1/e48793 %U https://doi.org/10.2196/48793 %U http://www.ncbi.nlm.nih.gov/pubmed/38625731 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e55080 %T Participation in Advance Care Planning Among Medically At-Risk Rural Veterans: Protocol for a Personalized Engagement Model %A Walkner,Tammy %A Karr,Daniel W %A Murray,Sarah %A Heeren,Amanda %A Berry-Stoelzle,Maresi %+ Veterans Rural Health Resource Center, Iowa City VA Health Care System, 601 Highway 6 West, Iowa City, IA, 52246, United States, 1 319 338 0581, maresi.berry-stoelzle@va.gov %K advance care planning %K chronic disease %K end-of-life care %K health care decision %K medical decision-making %K recruiting %K shared medical decision-making %D 2024 %7 12.4.2024 %9 Protocol %J JMIR Res Protoc %G English %X 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 %M 38608267 %R 10.2196/55080 %U https://www.researchprotocols.org/2024/1/e55080 %U https://doi.org/10.2196/55080 %U http://www.ncbi.nlm.nih.gov/pubmed/38608267 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e47017 %T The Challenges in Using eHealth Decision Resources for Surrogate Decision-Making in the Intensive Care Unit %A Sun,Wan-Na %A Kao,Chi-Yin %+ Department of Nursing, College of Medicine, National Cheng Kung University, 1 University Road, Tainan, 701, Taiwan, 886 6 2353535 ext 5843, chiyinkao@mail.ncku.edu.tw %K decision-making %K eHealth %K intensive care unit %K literacy %K surrogate %K mobile phone %D 2024 %7 1.4.2024 %9 Viewpoint %J J Med Internet Res %G English %X The mortality rate in intensive care units (ICUs) is notably high, with patients often relying on surrogates for critical medical decisions due to their compromised state. This paper provides a comprehensive overview of eHealth. The challenges of applying eHealth tools, including economic disparities and information inaccuracies are addressed. This study then introduces eHealth literacy and the assessment tools to evaluate users’ capability and literacy levels in using eHealth resources. A clinical scenario involving surrogate decision-making is presented. This simulated case involves a patient with a hemorrhagic stroke who has lost consciousness and requires medical procedures such as tracheostomy. However, due to the medical surrogate’s lack of familiarity with eHealth devices and limited literacy in using eHealth resources, difficulties arise in assisting the patient in making medical decisions. This scenario highlights challenges related to eHealth literacy and solution strategies are proposed. In conclusion, effective ICU decision-making with eHealth tools requires a careful balance between efficiency with inclusivity. Tailoring communication strategies and providing diverse materials are essential for effective eHealth decision resources in the ICU setting. Health professionals should adopt a patient-centered approach to enhance the decision-making experience, particularly for individuals with limited eHealth literacy. %M 38557504 %R 10.2196/47017 %U https://www.jmir.org/2024/1/e47017 %U https://doi.org/10.2196/47017 %U http://www.ncbi.nlm.nih.gov/pubmed/38557504 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 11 %N %P e45754 %T The Implementation of Recommender Systems for Mental Health Recovery Narratives: Evaluation of Use and Performance %A Slade,Emily %A Rennick-Egglestone,Stefan %A Ng,Fiona %A Kotera,Yasuhiro %A Llewellyn-Beardsley,Joy %A Newby,Chris %A Glover,Tony %A Keppens,Jeroen %A Slade,Mike %+ School of Health Sciences, Institute of Mental Health, University of Nottingham, University of Nottingham Innovation Park, Triumph Road, Nottingham, NG7 2TU, United Kingdom, 44 0115 823 0812, emily_slade@outlook.com %K recommender system %K mean absolute error %K precision %K intralist diversity %K item space coverage %K fairness across users %K psychosis %K Narrative Experiences Online trial %K NEON trial %K lived experience narrative %K recovery story %D 2024 %7 29.3.2024 %9 Original Paper %J JMIR Ment Health %G English %X 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). %M 38551630 %R 10.2196/45754 %U https://mental.jmir.org/2024/1/e45754 %U https://doi.org/10.2196/45754 %U http://www.ncbi.nlm.nih.gov/pubmed/38551630 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e56892 %T Patient Education and Decision Support for Long-Acting Injectable HIV Antiretroviral Therapy: Protocol for Tool Development and Pilot Testing with Ryan White HIV/AIDS Program Medical Case Management Programs in New York %A Irvine,Mary Kathryn %A Zimba,Rebecca %A Avoundjian,Tigran %A Peterson,Meghan %A Emmert,Connor %A Kulkarni,Sarah G %A Philbin,Morgan M %A Kelvin,Elizabeth A %A Nash,Denis %+ Bureau of Hepatitis, HIV and Sexually Transmitted Infections (BHHS), New York City Department of Health and Mental Hygiene, 42-09 28th St., New York, NY, 11101, United States, 1 347 396 7712, maryk.irvine@gmail.com %K HIV %K implementation science %K long-acting injectables %K LAI %K patient decision aid %K medical case management %K MCM %K antiretroviral therapy %K ART %D 2024 %7 27.3.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Long-acting injectable (LAI) HIV antiretroviral therapy (ART) presents a major opportunity to facilitate and sustain HIV viral suppression, thus improving health and survival among people living with HIV and reducing the risk of onward transmission. However, realizing the public health potential of LAI ART requires reaching patients who face barriers to daily oral ART adherence and thus can clinically benefit from alternative treatment modalities. Ryan White HIV/AIDS Program Part A medical case management (MCM) programs provide an array of services to address barriers to HIV care and treatment among economically and socially marginalized people living with HIV. These programs have demonstrated effectiveness in improving engagement along the continuum of care, but findings of limited program impact on durable viral suppression highlight the need to further innovate and hone strategies to support long-term ART adherence. Objective: This study aims to adapt and expand Ryan White MCM service strategies to integrate LAI ART regimen options, with the larger goal of improving health outcomes in the populations that could most benefit from alternatives to daily oral ART regimens. Methods: In 3 phases of work involving patient and provider participants, this study uses role-specific focus groups to elicit perceptions of LAI versus daily oral ART; discrete choice experiment (DCE) surveys to quantify preferences for different ART delivery options and related supports; and a nonrandomized trial to assess the implementation and utility of newly developed tools at 6 partnering Ryan White HIV/AIDS Program Part A MCM programs based in urban, suburban, and semirural areas of New York. Findings from the focus groups and DCEs, as well as feedback from advisory board meetings, informed the design and selection of the tools: a patient-facing, 2-page fact sheet, including frequently asked questions and a side-by-side comparison of LAI with daily oral ART; a patient-facing informational video available on YouTube (Google Inc); and a patient-provider decision aid. Implementation outcomes, measured through provider interviews, surveys, and service reporting, will guide further specification of strategies to integrate LAI ART options into MCM program workflows. Results: The study was funded in late April 2021 and received approval from the institutional review board in May 2021 under protocol 20-096. Focus groups were conducted in late 2021 (n=21), DCEs ran from June 2022 to January 2023 (n=378), and tools for piloting were developed by May 2023. The trial (May 2023 through January 2024) has enrolled >200 patients. Conclusions: This study is designed to provide evidence regarding the acceptability, feasibility, appropriateness, and utility of a package of patient-oriented tools for comparing and deciding between LAI ART and daily oral ART options. Study strengths include formative work to guide tool development, a mixed methods approach, and the testing of tools in real-world safety-net service settings. Trial Registration: Clinicaltrials.gov NCT05833542; https://clinicaltrials.gov/study/NCT05833542 International Registered Report Identifier (IRRID): DERR1-10.2196/56892 %M 38536227 %R 10.2196/56892 %U https://www.researchprotocols.org/2024/1/e56892 %U https://doi.org/10.2196/56892 %U http://www.ncbi.nlm.nih.gov/pubmed/38536227 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e47944 %T Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study %A Schilstra,Clarissa E %A Ellis,Sarah J %A Cohen,Jennifer %A Gall,Alana %A Diaz,Abbey %A Clarke,Kristina %A Dumlao,Gadiel %A Chard,Jennifer %A Cumming,Therese M %A Davis,Esther %A Dhillon,Haryana %A Burns,Mary Anne %A Docking,Kimberley %A Koh,Eng-Siew %A O'Reilly,Josephine %A Sansom-Daly,Ursula M %A Shaw,Joanne %A Speers,Nicole %A Taylor,Natalie %A Warne,Anthea %A Fardell,Joanna E %+ Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Faculty of Medicine and Health, Randwick Clinical Campus, University of New South Wales Sydney, Behavioural Sciences Unit, Kids Cancer Centre, Level 1 South, Sydney Children's Hospital, High St, Randwick, 2031, Australia, 61 405679809, c.schilstra@unsw.edu.au %K adolescent %K cancer %K education %K employment %K information needs %K oncology %K online information %K quality of life %K resource %K return to work %K school %K study %K supportive resources %K treatment %K young adult %D 2024 %7 25.3.2024 %9 Original Paper %J JMIR Cancer %G English %X Background: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs’ financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. Objective: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. Methods: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. Results: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. Conclusions: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive. %M 38526527 %R 10.2196/47944 %U https://cancer.jmir.org/2024/1/e47944 %U https://doi.org/10.2196/47944 %U http://www.ncbi.nlm.nih.gov/pubmed/38526527 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e50421 %T Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review %A Baines,Rebecca %A Stevens,Sebastian %A Austin,Daniela %A Anil,Krithika %A Bradwell,Hannah %A Cooper,Leonie %A Maramba,Inocencio Daniel %A Chatterjee,Arunangsu %A Leigh,Simon %+ Centre for Health Technology, University of Plymouth, Portland Square, Drakes Circus, Plymouth, PL4 8AA, United Kingdom, 44 07508916450, rebecca.baines@plymouth.ac.uk %K data sharing %K personal health data %K patient %K public attitudes %K systematic review %K secondary use %K third party %K willingness to share %K data privacy and security %D 2024 %7 5.3.2024 %9 Review %J J Med Internet Res %G English %X Background: International advances in information communication, eHealth, and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and the emergence of COVID-19, critical exploration of public willingness to share personal health data remains limited, particularly for third-party or secondary uses. Objective: This systematic review aims to explore factors that affect public willingness to share personal health data for third-party or secondary uses. Methods: A systematic search of 6 databases (MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and SocINDEX) was conducted with review findings analyzed using inductive-thematic analysis and synthesized using a narrative approach. Results: Of the 13,949 papers identified, 135 were included. Factors most commonly identified as a barrier to data sharing from a public perspective included data privacy, security, and management concerns. Other factors found to influence willingness to share personal health data included the type of data being collected (ie, perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritization, and ability to directly impact patient care; trust in the data user, as well as in associated processes, often established through individual choice and control over what data are shared with whom, when, and for how long, supported by appropriate models of dynamic consent; the presence of a feedback loop; and clearly articulated benefits or issue relevance including valued incentivization and compensation at both an individual and collective or societal level. Conclusions: There is general, yet conditional public support for sharing personal health data for third-party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and for how long are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritize individual or collective benefits over and above commercial gain. Failure to understand, design, and refine data sharing approaches in response to changeable patient preferences will only jeopardize the tangible benefits of data sharing practices being fully realized. %M 38441944 %R 10.2196/50421 %U https://www.jmir.org/2024/1/e50421 %U https://doi.org/10.2196/50421 %U http://www.ncbi.nlm.nih.gov/pubmed/38441944 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e46625 %T Improving Concordance Between Clinicians With Australian Guidelines for Bowel Cancer Prevention Using a Digital Application: Randomized Controlled Crossover Study %A Ow,Tsai-Wing %A Sukocheva,Olga %A Bampton,Peter %A Iyngkaran,Guruparan %A Rayner,Christopher K %A Tse,Edmund %+ Department of Gastroenterology and Hepatology, Royal Adelaide Hospital, Port Road, Adelaide, 5000, Australia, 61 70740000, tsai-wing.ow@sa.gov.au %+ Faculty of Health and Medical Sciences, University of Adelaide, North Terrace, Adelaide, 5005, Australia, 61 83135208, tsai-wing.ow@sa.gov.au %K colorectal cancer %K guidelines %K colorectal cancer screening %K digital application %K questionnaire %K application %K cancer prevention %K prevention %K cancer %K bowel cancer %K surveillance %K clinical vignette quiz %K usability %K Australia %D 2024 %7 22.2.2024 %9 Original Paper %J JMIR Cancer %G English %X Background: Australia’s bowel cancer prevention guidelines, following a recent revision, are among the most complex in the world. Detailed decision tables outline screening or surveillance recommendations for 230 case scenarios alongside cessation recommendations for older patients. While these guidelines can help better allocate limited colonoscopy resources, their increasing complexity may limit their adoption and potential benefits. Therefore, tools to support clinicians in navigating these guidelines could be essential for national bowel cancer prevention efforts. Digital applications (DAs) represent a potentially inexpensive and scalable solution but are yet to be tested for this purpose. Objective: This study aims to assess whether a DA could increase clinician adherence to Australia’s new colorectal cancer screening and surveillance guidelines and determine whether improved usability correlates with greater conformance to guidelines. Methods: As part of a randomized controlled crossover study, we created a clinical vignette quiz to evaluate the efficacy of a DA in comparison with the standard resource (SR) for making screening and surveillance decisions. Briefings were provided to study participants, which were tailored to their level of familiarity with the guidelines. We measured the adherence of clinicians according to their number of guideline-concordant responses to the scenarios in the quiz using either the DA or the SR. The maximum score was 18, with higher scores indicating improved adherence. We also tested the DA’s usability using the System Usability Scale. Results: Of 117 participants, 80 were included in the final analysis. Using the SR, the adherence of participants was rated a median (IQR) score of 10 (7.75-13) out of 18. The participants’ adherence improved by 40% (relative risk 1.4, P<.001) when using the DA, reaching a median (IQR) score of 14 (12-17) out of 18. The DA was rated highly for usability with a median (IQR) score of 90 (72.5-95) and ranked in the 96th percentile of systems. There was a moderate correlation between the usability of the DA and better adherence (rs=0.4; P<.001). No differences between the adherence of specialists and nonspecialists were found, either with the SR (10 vs 9; P=.47) or with the DA (13 vs 15; P=.24). There was no significant association between participants who were less adherent with the DA (n=17) and their age (P=.06), experience with decision support tools (P=.51), or academic involvement with a university (P=.39). Conclusions: DAs can significantly improve the adoption of complex Australian bowel cancer prevention guidelines. As screening and surveillance guidelines become increasingly complex and personalized, these tools will be crucial to help clinicians accurately determine the most appropriate recommendations for their patients. Additional research to understand why some practitioners perform worse with DAs is required. Further improvements in application usability may optimize guideline concordance further. %M 38238256 %R 10.2196/46625 %U https://cancer.jmir.org/2024/1/e46625 %U https://doi.org/10.2196/46625 %U http://www.ncbi.nlm.nih.gov/pubmed/38238256 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 7 %N %P e47545 %T A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study %A Kokorelias,Kristina Marie %A Lee,Tin-Suet Joan %A Bayley,Mark %A Seto,Emily %A Toulany,Alene %A Nelson,Michelle L A %A Dimitropoulos,Gina %A Penner,Melanie %A Simpson,Robert %A Munce,Sarah E P %+ KITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Room 106, 345 Rumsey Road, Toronto, ON, M4G 1R7, Canada, 1 416 597 3422, sarah.munce@uhn.ca %K youth %K patient navigation %K web-based intervention %K peer support %K transition %K childhood disability %K caregiver %K transitional care intervention %K social support %K usability %K program %K children %K pediatric %K disability %K digital health %K eHealth %K web-based support %K web-based health %D 2024 %7 7.2.2024 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. Objective: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). Methods: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). Results: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants’ feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. Conclusions: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities. %M 38324351 %R 10.2196/47545 %U https://pediatrics.jmir.org/2024/1/e47545 %U https://doi.org/10.2196/47545 %U http://www.ncbi.nlm.nih.gov/pubmed/38324351 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e52096 %T The Development and Use of a New Visual Tool (REVISIT) to Support Participant Recall: Web-Based Interview Study Among Older Adults %A Dryden,Eileen M %A Anwar,Chitra %A Conti,Jennifer %A Boudreau,Jacqueline H %A Kennedy,Meaghan A %A Hung,William W %A Nearing,Kathryn A %A Pimentel,Camilla B %A Moo,Lauren %+ Center for Healthcare Organization and Implementation Research, VA Bedford Healthcare System, Veterans Health Administration, 200 Springs Road, Bedford, MA, 01730, United States, 1 781 506 2369, eileen.dryden@va.gov %K qualitative interviews %K visual recall aid %K older adults %K health services research %K web-based methods %K visual tool %K recall %K qualitative interview %K experience %K perspective %K motivation %K patient %K recall capacity %K medical information %K visual appointment %K geriatric %K older people %K telemedicine %K videoconference %K e-consultation %K e-medicine %K internet medicine %K REVISIT %K Remembering Healthcare Encounters Visually and Interactively %K mobile phone %D 2024 %7 1.2.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Qualitative health services research often relies on semistructured or in-depth interviews to develop a deeper understanding of patient experiences, motivations, and perspectives. The quality of data gathered is contingent upon a patient’s recall capacity; yet, studies have shown that recall of medical information is low. Threats to generating rich and detailed interview data may be more prevalent when interviewing older adults. Objective: We developed and studied the feasibility of using a tool, Remembering Healthcare Encounters Visually and Interactively (REVISIT), which has been created to aid the recall of a specific telemedicine encounter to provide health services research teams with a visual tool, to improve qualitative interviews with older adults. Methods: The REVISIT visual appointment summary was developed to facilitate web-based interviews with our participants as part of an evaluation of a geriatric telemedicine program. Our primary aims were to aid participant recall, maintain focus on the index visit, and establish a shared understanding of the visit between participants and interviewers. The authors’ experiences and observations developing REVISIT and using it during videoconference interviews (N=16) were systematically documented and synthesized. We discuss these experiences with REVISIT and suggest considerations for broader implementation and future research to expand upon this preliminary work. Results: REVISIT enhanced the interview process by providing a focus and catalyst for discussion and supporting rapport-building with participants. REVISIT appeared to support older patients’ and caregivers’ recollection of a clinical visit, helping them to share additional details about their experience. REVISIT was difficult to read for some participants, however, and could not be used for phone interviews. Conclusions: REVISIT is a promising tool to enhance the quality of data collected during interviews with older, rural adults and caregivers about a health care encounter. This novel tool may aid recall of health care experiences for those groups for whom it may be more challenging to collect accurate, rich qualitative data (eg, those with cognitive impairment or complex medical care), allowing health services research to include more diverse patient experiences. %M 38300691 %R 10.2196/52096 %U https://formative.jmir.org/2024/1/e52096 %U https://doi.org/10.2196/52096 %U http://www.ncbi.nlm.nih.gov/pubmed/38300691 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e43943 %T The Effect of a Video-Assisted Health Education Program Followed by Peer Education on the Health Literacy of COVID-19 and Other Infectious Diseases Among School Children: Quasi-Randomized Controlled Trial %A Zhang,Xiaojuan %A Wen,Yingkun Justin %A Han,Ning %A Jiang,Yawen %+ School of Public Health (Shenzhen), Sun Yat-sen University, Room 533, West Wing of Medical Complex #1, Sun Yat-sen University, 66 Gongchang Road, Guangming District Shenzhen, Shenzhen, Guangdong, China, 86 13632974660, jiangyw26@mail.sysu.edu.cn %K infectious diseases %K primary school students %K quasi-randomized controlled trial %K video-assisted health education %K peer education %K item response theory %K IRT %D 2024 %7 29.1.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: To improve the engagement and effectiveness of traditional health programs, it is necessary to explore alternative models of health education including video-assisted lectures and peer education. Objective: This study aimed to evaluate the effects of a combination of video-assisted lectures and peer education on health literacy related to infectious diseases among students. Methods: Third-grade classes from 11 pilot schools in Longgang District of Shenzhen, China, were randomized to the intervention and control groups. In the intervention group, a video-assisted interactive health education program was conducted twice over a time span of 5 months. Each of the 2 sessions included a 40-minute lecture on COVID-19 and other common infectious diseases in schools and a 5-minute science video. In addition, 5 “little health supervisors” at the end of the first session were elected in each class, who were responsible for helping class members to learn health knowledge and develop good hygiene habits. Students answered the same quiz before the first and after the second session. Models based on item response theory (IRT) were constructed to score the students’ knowledge of infectious diseases based on the quiz. Results: In total, 52 classes and 2526 students (intervention group: n=1311; control group: n=1215) were enrolled. Responses of the baseline survey were available for 2177 (86.2%; intervention group: n=1306; control group: n=871) students and those of the postintervention survey were available for 1862 (73.7%; intervention group: n=1187; control group: n=675). There were significant cross-group differences in the rates of correctly answering questions about influenza symptoms, transmission, and preventive measures; chicken pox symptoms; norovirus diarrhea symptoms; mumps symptoms; and COVID-19 symptoms. Average IRT scores of questions related to infectious diseases in the intervention and control groups were, respectively, –0.0375 (SD 0.7784) and 0.0477 (SD 0.7481) before the intervention (P=.01), suggesting better baseline knowledge in the control group. After the intervention, the average scores of the intervention and control groups were 0.0543 (SD 0.7569) and –0.1115 (SD 0.7307), respectively (P<.001), suggesting not only significantly better scores but also greater improvement in the intervention group. Conclusions: After the health education project, the correct answer rate of infectious disease questions in the intervention group was higher than that of the control group, which indicates significant effects of the combination of video-assisted lectures and peer education for the promotion of health literacy. In addition, the intervention effect of the first session persisted for at least 4 months up to the second session. As such, the proposed program was effective in improving the health literacy of school children in relation to infectious diseases and should be considered for massive health promotion campaigns during pandemics. Trial Registration: ISRCTN ISRCTN49297995; https://www.isrctn.com/ISRCTN49297995 %M 38285496 %R 10.2196/43943 %U https://humanfactors.jmir.org/2024/1/e43943 %U https://doi.org/10.2196/43943 %U http://www.ncbi.nlm.nih.gov/pubmed/38285496 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e51200 %T Dentists’ Information Needs and Opinions on Accessing Patient Information via Health Information Exchange: Survey Study %A Li,Shuning %A Felix Gomez,Grace Gomez %A Xu,Huiping %A Rajapuri,Anushri Singh %A Dixon,Brian E %A Thyvalikakath,Thankam %+ Department of Dental Public Health and Dental Informatics, Indiana University School of Dentistry, 415 Lansing St, Indianapolis, IN, 46201, United States, 1 3172745460, tpt@iu.edu %K dentistry %K medical history %K integrated medical and dental records %K health information exchange %K medical record %K dental record %K dental %K medical information %K dental care %K adverse drug effect %K medication %K allergies %K cost %K data safety %K data accuracy %D 2024 %7 11.1.2024 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 38206667 %R 10.2196/51200 %U https://formative.jmir.org/2024/1/e51200 %U https://doi.org/10.2196/51200 %U http://www.ncbi.nlm.nih.gov/pubmed/38206667 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e50550 %T Supportive Digital Health Service During Cancer Chemotherapy: Single-Arm Before-and-After Feasibility Study %A Fridriksdottir,Nanna %A Ingadottir,Brynja %A Skuladottir,Kristin %A Zoëga,Sigridur %A Gunnarsdottir,Sigridur %+ Landspitali- The National University Hospital of Iceland, Hringbraut, Reykjavik, 101, Iceland, 354 543 1000 ext 6065, nannafri@landspitali.is %K web portal for patients with cancer %K supportive digital health service %K symptom monitoring %K self-management support %K feasibility %K usability %K acceptability %K patient education %K health engagement %K patient-reported outcomes %K digital health service %K patient portal %K electronic health records %K mobile phone %D 2023 %7 22.12.2023 %9 Original Paper %J JMIR Form Res %G English %X 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 (β=−.45), ESASr engagement (β=.5), symptom interference (β=.4), and received knowledge (β=.41). The mean acceptability score, 3.97 (SD 0.5), was above average and predicted by age (β=−.31), ESASr engagement (β=.37), symptom interference (β=.60), self-care self-efficacy (β=.37), and received knowledge (β=.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. %M 38015268 %R 10.2196/50550 %U https://formative.jmir.org/2023/1/e50550 %U https://doi.org/10.2196/50550 %U http://www.ncbi.nlm.nih.gov/pubmed/38015268 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e44382 %T Web-Based Public Reporting as a Decision-Making Tool for Consumers of Long-Term Care in the United States and the United Kingdom: Systematic Analysis of Report Cards %A Kast,Kristina %A Otten,Sara-Marie %A Konopik,Jens %A Maier,Claudia B %+ Chair of Health Care Management, Institute of Management, Friedrich-Alexander-Universität Erlangen-Nürnberg, Lange Gasse 20, Nürnberg, 90403, Germany, 49 911530296393, kristina.kast@fau.de %K long-term care %K medical decision-making %K nursing homes %K public reporting %K quality improvement %K report cards %D 2023 %7 14.12.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Report cards can help consumers make an informed decision when searching for a long-term care facility. Objective: This study aims to examine the current state of web-based public reporting on long-term care facilities in the United States and the United Kingdom. Methods: We conducted an internet search for report cards, which allowed for a nationwide search for long-term care facilities and provided freely accessible quality information. On the included report cards, we drew a sample of 1320 facility profiles by searching for long-term care facilities in 4 US and 2 UK cities. Based on those profiles, we analyzed the information provided by the included report cards descriptively. Results: We found 40 report cards (26 in the United States and 14 in the United Kingdom). In total, 11 of them did not state the source of information. Additionally, 7 report cards had an advanced search field, 24 provided simplification tools, and only 3 had a comparison function. Structural quality information was always provided, followed by consumer feedback on 27 websites, process quality on 15 websites, prices on 12 websites, and outcome quality on 8 websites. Inspection results were always displayed as composite measures. Conclusions: Apparently, the identified report cards have deficits. To make them more helpful for users and to bring public reporting a bit closer to its goal of improving the quality of health care services, both countries are advised to concentrate on optimizing the existing report cards. Those should become more transparent and improve the reporting of prices and consumer feedback. Advanced search, simplification tools, and comparison functions should be integrated more widely. %M 38096004 %R 10.2196/44382 %U https://formative.jmir.org/2023/1/e44382 %U https://doi.org/10.2196/44382 %U http://www.ncbi.nlm.nih.gov/pubmed/38096004 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e46611 %T An Active Model of Research Translation for the General Public: Content Analysis of a YouTube-Based Health Podcast %A Tsulukidze,Maka %A Grande,Stuart W %A Naslund,John A %+ Department of Health Sciences, Marieb College of Health & Human Services, Florida Gulf Coast University, 10501 FGCU Blvd S, Fort Myers, FL, 33965, United States, 1 239 590 7496, mtsulukidze@fgcu.edu %K evidence translation %K user engagement %K consumer education %K online health information %K disseminating science %K health education %D 2023 %7 5.12.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Online health information seeking is changing the way people engage with health care and the health system. Recent changes in practices related to seeking, accessing, and disseminating scientific research, and in particular health information, have enabled a high level of user engagement. Objective: This study aims to examine an innovative model of research translation, The Huberman Lab Podcast (HLP), developed by Andrew Huberman, Professor of Neurobiology and Ophthalmology at the Stanford School of Medicine. The HLP leverages social media to deliver health information translated into specific, actionable practices and health strategies directly to the general public. This research characterizes the HLP as an Active Model of Research Translation and assesses its potential as a framework for replicability and wider adoption. Methods: We applied conventional content analysis of the YouTube transcript data and directed content analysis of viewers’ YouTube comments to 23 HLP episodes released from January to October 2021, reflecting the time of data analysis. We selected 7 episodes and a welcome video, to describe and identify key characteristics of the HLP model. We analyzed viewer comments for 18 episodes to determine whether viewers found the HLP content valuable, accessible, and easy to implement. Results: The key HLP features are direct-to-the-consumer, zero-cost, bilingual, and actionable content. We identified 3 main organizing categories and 10 subcategories as the key elements of the HLP: (1) Why: Educate and Empower and Bring Zero Cost to Consumer Information to the General Public; (2) What: Tools and Protocols; Underlying Mechanisms; and Grounded in Science; (3) How: Linear and Iterative Knowledge Building Process; Lecture-Style Sessions; Interactive and Consumer Informed; Easily Accessible; and Building the Community. Analysis of viewers’ comments found strong consumer support for the key HLP model elements. Conclusions: This Active Model of Research Translation offers a way to synthesize scientific evidence and deliver it directly to end users in the form of actionable tools and education. Timely evidence translation using effective consumer engagement and education techniques appears to improve access and confidence related to health information use and reduces challenges to understanding and applying health information received from health providers. Framing complex content in an approachable manner, engaging the target audience, encouraging participation, and ensuring open access to the content meet current recommendations on innovative practices for leveraging social media or other digital platforms for disseminating science and research findings to the general public, and are likely key contributors to HLP impact and potential for success. The model offers a replicable framework for translating and disseminating scientific evidence. Similar active models of research translation can have implications for accessing health information and implementing health strategies for improved outcomes. Areas for further investigation are specific and measurable impacts on health, usability, and relevance of the model for reaching marginalized and high-risk populations. %M 38051560 %R 10.2196/46611 %U https://formative.jmir.org/2023/1/e46611 %U https://doi.org/10.2196/46611 %U http://www.ncbi.nlm.nih.gov/pubmed/38051560 %0 Journal Article %@ 2561-9128 %I JMIR Publications %V 6 %N %P e49186 %T Survey of the Impact of Decision Support in Preoperative Management of Anemia (i-Anemia): Survey Study %A Mignanelli,Gaëtan %A Boyer,Richard %A Bonifas,Nicolas %A Rineau,Emmanuel %A Moussali,Yassine %A Le Guen,Morgan %+ Department of Anesthesia and Pain Medicine, Hôpital Foch, Université Versailles Saint Quentin, 51 Rue Edouard Nortier, Neuilly sur Seine, 92200, France, 33 0646288339, gaetanms@gmail.com %K anemia %K transfusion %K patient blood management %K preoperative optimization %K preoperative %K blood %K decision support %K randomized %K case %K survey %K anesthesiologists %K anesthesiologist %K anesthesia %K anesthesiology %K professional development %K digital health %K surgery %K perioperative %D 2023 %7 1.12.2023 %9 Original Paper %J JMIR Perioper Med %G English %X Background: Major surgery on patients with anemia has demonstrated an increased risk of perioperative blood transfusions and postoperative morbidity and mortality. Recent studies have shown that integrating preoperative anemia treatment as a component of perioperative blood management may reduce blood product utilization and improve outcomes in both cardiac and noncardiac surgery. However, outpatient management of anemia falls outside of daily practice for most anesthesiologists and is probably weakly understood. Objective: We conducted a simulated case survey with anesthesiologists to accomplish the following aims: (1) evaluate the baseline knowledge of the preoperative optimization of anemia and (2) determine the impact of real-time clinical decision support on anemia management. Methods: We sent a digital survey (i-Anemia) to members of the French Society of Anaesthesia and Critical Care. The i-Anemia survey contained 7 simulated case vignettes, each describing a patient’s brief clinical history and containing up to 3 multiple-choice questions related to preoperative anemia management (12 questions in total). The cases concerned potential situations of preoperative anemia and were created and validated with a committee of patient blood management experts. Correct answers were determined by the current guidelines or by expert consensus. Eligible participants were randomly assigned to control or decision support groups. In the decision support group, the primary outcome measured was the correct response rate. Results: Overall, 1123 participants were enrolled and randomly divided into control (n=568) and decision support (n=555) groups. Among them, 763 participants fully responded to the survey. We obtained a complete response rate of 65.6% (n=364) in the group receiving cognitive aid and 70.2% (n=399) in the group without assistance. The mean duration of response was 10.2 (SD 6.8) minutes versus 7.8 (SD 5) minutes for the decision support and control groups, respectively (P<.001). The score significantly improved with cognitive aid (mean 10.3 out of 12, SD 2.1) in comparison to standard care (mean 6.2 out of 12, SD 2.1; P<.001). Conclusions: Management strategies to optimize preoperative anemia are not fully known and applied by anesthesiologists in daily practice despite their clinical importance. However, adding a decision support tool can significantly improve patient care by reminding practitioners of current recommendations. %M 38039068 %R 10.2196/49186 %U https://periop.jmir.org/2023/1/e49186 %U https://doi.org/10.2196/49186 %U http://www.ncbi.nlm.nih.gov/pubmed/38039068 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e47762 %T The Readability and Quality of Web-Based Patient Information on Nasopharyngeal Carcinoma: Quantitative Content Analysis %A Tan,Denise Jia Yun %A Ko,Tsz Ki %A Fan,Ka Siu %+ Department of Surgery, Royal Stoke University Hospital, Newcastle Rd, Stoke on Trent, ST4 6QG, United Kingdom, 44 7378977812, tszkiko95@gmail.com %K nasopharyngeal cancer %K internet information %K readability %K Journal of the American Medical Association %K JAMA %K DISCERN %K artificial intelligence %K AI %D 2023 %7 27.11.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Nasopharyngeal carcinoma (NPC) is a rare disease that is strongly associated with exposure to the Epstein-Barr virus and is characterized by the formation of malignant cells in nasopharynx tissues. Early diagnosis of NPC is often difficult owing to the location of initial tumor sites and the nonspecificity of initial symptoms, resulting in a higher frequency of advanced-stage diagnoses and a poorer prognosis. Access to high-quality, readable information could improve the early detection of the disease and provide support to patients during disease management. Objective: This study aims to assess the quality and readability of publicly available web-based information in the English language about NPC, using the most popular search engines. Methods: Key terms relevant to NPC were searched across 3 of the most popular internet search engines: Google, Yahoo, and Bing. The top 25 results from each search engine were included in the analysis. Websites that contained text written in languages other than English, required paywall access, targeted medical professionals, or included nontext content were excluded. Readability for each website was assessed using the Flesch Reading Ease score and the Flesch-Kincaid grade level. Website quality was assessed using the Journal of the American Medical Association (JAMA) and DISCERN tools as well as the presence of a Health on the Net Foundation seal. Results: Overall, 57 suitable websites were included in this study; 26% (15/57) of the websites were academic. The mean JAMA and DISCERN scores of all websites were 2.80 (IQR 3) and 57.60 (IQR 19), respectively, with a median of 3 (IQR 2-4) and 61 (IQR 49-68), respectively. Health care industry websites (n=3) had the highest mean JAMA score of 4 (SD 0). Academic websites (15/57, 26%) had the highest mean DISCERN score of 77.5. The Health on the Net Foundation seal was present on only 1 website, which also achieved a JAMA score of 3 and a DISCERN score of 50. Significant differences were observed between the JAMA score of hospital websites and the scores of industry websites (P=.04), news service websites (P<.048), charity and nongovernmental organization websites (P=.03). Despite being a vital source for patients, general practitioner websites were found to have significantly lower JAMA scores compared with charity websites (P=.05). The overall mean readability scores reflected an average reading age of 14.3 (SD 1.1) years. Conclusions: The results of this study suggest an inconsistent and suboptimal quality of information related to NPC on the internet. On average, websites presented readability challenges, as written information about NPC was above the recommended reading level of sixth grade. As such, web-based information requires improvement in both quality and accessibility, and healthcare providers should be selective about information recommended to patients, ensuring they are reliable and readable. %M 38010802 %R 10.2196/47762 %U https://formative.jmir.org/2023/1/e47762 %U https://doi.org/10.2196/47762 %U http://www.ncbi.nlm.nih.gov/pubmed/38010802 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e46146 %T Co-Designing an Initiative to Increase Shared Access to Older Adults’ Patient Portals: Stakeholder Engagement %A Dukhanin,Vadim %A Wolff,Jennifer L %A Salmi,Liz %A Harcourt,Kendall %A Wachenheim,Deborah %A Byock,Ira %A Gonzales,Matthew J %A Niehus,Doug %A Parshley,Marianne %A Reay,Caroline %A Epstein,Sara %A Mohile,Supriya %A Farrell,Timothy W %A Supiano,Mark A %A Jajodia,Anushka %A DesRoches,Catherine M %A , %+ Department of Medicine, Harvard Medical School, 133 Brookline Avenue, 2nd Floor Annex, Boston, MA, 02115, United States, 1 617 975 7613, cdesroch@bidmc.harvard.edu %K patient portal %K electronic health record %K care partners %K stakeholder engagement %K patient engagement %K human-centered design %K mobile phone %K design %K older adults %K digital platform %K awareness %K development %K engagement %K stakeholder %K education %D 2023 %7 22.11.2023 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 37991827 %R 10.2196/46146 %U https://www.jmir.org/2023/1/e46146 %U https://doi.org/10.2196/46146 %U http://www.ncbi.nlm.nih.gov/pubmed/37991827 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 10 %N %P e47913 %T Usability and Overall Perception of a Health Bot for Nutrition-Related Questions for Patients Receiving Bariatric Care: Mixed Methods Study %A Beyeler,Marina %A Légeret,Corinne %A Kiwitz,Fabian %A van der Horst,Klazine %+ Nutrition and Dietetics, School of Health Professions, Bern University of Applied Sciences, Murtenstrasse 10, Bern, 3008, Switzerland, 41 799576535, klazine.vanderhorst@bfh.ch %K bariatric surgery %K nutrition information %K usability %K satisfaction %K artificial intelligence %K health bot %K mobile phone %D 2023 %7 8.11.2023 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Currently, over 4000 bariatric procedures are performed annually in Switzerland. To improve outcomes, patients need to have good knowledge regarding postoperative nutrition. To potentially provide them with knowledge between dietetic consultations, a health bot (HB) was created. The HB can answer bariatric nutrition questions in writing based on artificial intelligence. Objective: This study aims to evaluate the usability and perception of the HB among patients receiving bariatric care. Methods: Patients before or after bariatric surgery tested the HB. A mixed methods approach was used, which consisted of a questionnaire and qualitative interviews before and after testing the HB. The dimensions usability of, usefulness of, satisfaction with, and ease of use of the HB, among others, were measured. Data were analyzed using R Studio (R Studio Inc) and Excel (Microsoft Corp). The interviews were transcribed and a summary inductive content analysis was performed. Results: A total of 12 patients (female: n=8, 67%; male: n=4, 33%) were included. The results showed excellent usability with a mean usability score of 87 (SD 12.5; range 57.5-100) out of 100. Other dimensions of acceptability included usefulness (mean 5.28, SD 2.02 out of 7), satisfaction (mean 5.75, SD 1.68 out of 7), and learnability (mean 6.26, SD 1.5 out of 7). The concept of the HB and availability of reliable nutrition information were perceived as desirable (mean 5.5, SD 1.64 out of 7). Weaknesses were identified in the response accuracy, limited knowledge, and design of the HB. Conclusions: The HB’s ease of use and usability were evaluated to be positive; response accuracy, topic selection, and design should be optimized in a next step. The perceptions of nutrition professionals and the impact on patient care and the nutrition knowledge of participants need to be examined in further studies. %M 37938894 %R 10.2196/47913 %U https://humanfactors.jmir.org/2023/1/e47913 %U https://doi.org/10.2196/47913 %U http://www.ncbi.nlm.nih.gov/pubmed/37938894 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e46961 %T Development of an Information Guideline for Kidney Transplant Recipients in a Clinical Trial: Protocol for a Modified Delphi Method %A Faraldo-Cabana,Araceli %A Sánchez-Fructuoso,Ana %A Pérez-Flores,Isabel %A Beneit-Montesinos,Juan Vicente %A Muñoz-Jiménez,Daniel %A Peix Jiménez,Belén %A Asensio Arredondo,Sara %A Nuño Santana,Enriqueta Isabel %A Santana Valeros,María José %A Hidalgo González,Virginia %A González García,Fernando %A Ortuño-Soriano,Ismael %+ Facultad de Enfermería, Fisioterapia y Podología, Universidad Complutense de Madrid, Instituto de Investigación Sanitaria San Carlos, Avda. Complutense, s/n, Madrid, 28040, Spain, 34 913941346, iortunos@ucm.es %K compliance %K Delphi method %K guideline %K kidney transplantation %K patient adherence %K patients %D 2023 %7 6.11.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: Renal transplantation is the treatment of choice for most cases of end-stage renal disease. Recipients need to lead a healthy lifestyle to minimize the potential side effects of immunosuppressive drugs and improve transplant outcomes. There is not much evidence about the best way to increase adherence to healthy lifestyles in kidney transplant recipients, so one of the objectives set by the nursing team is to train people to acquire the necessary skills and tools to be able to take care of themselves. In this sense, the consensual development of appropriate materials may be useful and of interest. Objective: The aim of this study was to develop an information guide for adults with kidney transplants to be assessed in a subsequent clinical trial as an intervention to increase adherence to healthy habits. Methods: We used a 3-step, methodological, sequential approach: (1) training from a group of experts and item consensus; (2) review of the medical literature available; and (3) use of the Delphi technique with on-site meetings. A total of 5 nurses from the Community of Madrid Kidney Transplantation Unit in Spain were asked to participate. The patients’ lifestyle factors that, according to the medical literature available and experts’ opinions, have the greatest impact on the survival of the transplanted organ and the recipients themselves were all described. Results: After using the modified Delphi method to reach a consensus on the items to be included and the information needed in each, an information guide for adult kidney transplant patients was developed. This guide facilitates the structuring of health care, information, and recommendations necessary for effective self-care for each person. The result is considered to be an easy-to-understand tool, useful for transplant doctors and nurses, in simple language, with information based on the latest scientific-medical evidence published to date, aspects of which will be evaluated in a clinical trial designed for this purpose. Conclusions: Currently, this guide is the main intervention variable of a clinical trial (registered on ClinicalTrials.gov; NCT05715580) aimed at improving compliance with healthy habits in kidney transplant recipients in the Community of Madrid, Spain. The method used in its development has been useful and agile, and the result is a guide that can be easily updated periodically following the same procedure. International Registered Report Identifier (IRRID): DERR1-10.2196/46961 %M 37930773 %R 10.2196/46961 %U https://www.researchprotocols.org/2023/1/e46961 %U https://doi.org/10.2196/46961 %U http://www.ncbi.nlm.nih.gov/pubmed/37930773 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e46552 %T Preference Elicitation and Treatment Decision-Making Among Men Diagnosed With Prostate Cancer: Randomized Controlled Trial Results of Healium %A Diefenbach,Michael A %A Marziliano,Allison %A Tagai,Erin K %A Pfister,Halie %A Lapitan,Emmanuel %A Hall,Simon J %A Vira,Manish %A Ibrahim,Said %A Aibel,Kelli %A Kutikov,Alexander %A Horwitz,Eric M %A Miyamoto,Curtis %A Reese,Adam C %A Miller,Suzanne M %+ Institute of Health System Science, The Feinstein Institutes for Medical Research, Northwell Health, 600 Community Drive, Suite 403, Manhasset, NY, 11030, United States, 1 516 600 1400, mdiefenbach@northwell.edu %K prostate cancer %K decision-making %K decision support %K decision tool %K web-based intervention %K patient preferences %K preference elicitation software %K preference %K RCT %K randomized controlled trial %K oncology %K prostate %K men’s health %K emotional %D 2023 %7 20.10.2023 %9 Original Paper %J J Med Internet Res %G English %X 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 %M 37862103 %R 10.2196/46552 %U https://www.jmir.org/2023/1/e46552 %U https://doi.org/10.2196/46552 %U http://www.ncbi.nlm.nih.gov/pubmed/37862103 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e46809 %T Toward Shared Decision-Making in Degenerative Cervical Myelopathy: Protocol for a Mixed Methods Study %A Sangeorzan,Irina %A Antonacci,Grazia %A Martin,Anne %A Grodzinski,Ben %A Zipser,Carl M %A Murphy,Rory K J %A Andriopoulou,Panoraia %A Cook,Chad E %A Anderson,David B %A Guest,James %A Furlan,Julio C %A Kotter,Mark R N %A Boerger,Timothy F %A Sadler,Iwan %A Roberts,Elizabeth A %A Wood,Helen %A Fraser,Christine %A Fehlings,Michael G %A Kumar,Vishal %A Jung,Josephine %A Milligan,James %A Nouri,Aria %A Martin,Allan R %A Blizzard,Tammy %A Vialle,Luiz Roberto %A Tetreault,Lindsay %A Kalsi-Ryan,Sukhvinder %A MacDowall,Anna %A Martin-Moore,Esther %A Burwood,Martin %A Wood,Lianne %A Lalkhen,Abdul %A Ito,Manabu %A Wilson,Nicky %A Treanor,Caroline %A Dugan,Sheila %A Davies,Benjamin M %+ Department of Clinical Neurosurgery, University of Cambridge, Box 167, Cambridge Biomedical Campus, Addenbrooke’s Hospital, Cambridge, CB2 0QQ, United Kingdom, 44 7766 692608, bd375@cam.ac.uk %K degenerative cervical myelopathy %K spine %K spinal cord %K chronic %K aging %K geriatric %K patient engagement %K shared decision-making %K process mapping %K core information set %K decision-making %K patient education %K common data element %K Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy %K RECODE-DCM %D 2023 %7 9.10.2023 %9 Protocol %J JMIR Res Protoc %G English %X 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 %M 37812472 %R 10.2196/46809 %U https://www.researchprotocols.org/2023/1/e46809 %U https://doi.org/10.2196/46809 %U http://www.ncbi.nlm.nih.gov/pubmed/37812472 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 6 %N %P e49154 %T Older Persons’ and Health Care Professionals’ Design Choices When Co-Designing a Medication Plan Aiming to Promote Patient Safety: Case Study %A Holmqvist,Malin %A Johansson,Linda %A Lindenfalk,Bertil %A Thor,Johan %A Ros,Axel %+ Department of Public Health and Healthcare, Region Jönköping County, Box 1024, Jönköping, 551 11, Sweden, 46 706702569, malin.m.holmqvist@rjl.se %K co-design %K engagement %K medications %K medication plan %K older people %K older adults %K participatory %K patient experience %K patient safety %K remote %D 2023 %7 5.10.2023 %9 Original Paper %J JMIR Aging %G English %X 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. %M 37796569 %R 10.2196/49154 %U https://aging.jmir.org/2023/1/e49154 %U https://doi.org/10.2196/49154 %U http://www.ncbi.nlm.nih.gov/pubmed/37796569 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e50638 %T Prompt Engineering as an Important Emerging Skill for Medical Professionals: Tutorial %A Meskó,Bertalan %+ The Medical Futurist Institute, Povl Bang-Jensen u. 2/B1. 4/1., Budapest, 1118, Hungary, 36 703807260, berci@medicalfuturist.com %K artificial intelligence %K AI %K digital health %K future %K technology %K ChatGPT %K GPT-4 %K large language models %K language model %K LLM %K prompt %K prompts %K prompt engineering %K AI tool %K engineering %K healthcare professional %K decision-making %K LLMs %K chatbot %K chatbots %K conversational agent %K conversational agents %K NLP %K natural language processing %D 2023 %7 4.10.2023 %9 Tutorial %J J Med Internet Res %G English %X Prompt engineering is a relatively new field of research that refers to the practice of designing, refining, and implementing prompts or instructions that guide the output of large language models (LLMs) to help in various tasks. With the emergence of LLMs, the most popular one being ChatGPT that has attracted the attention of over a 100 million users in only 2 months, artificial intelligence (AI), especially generative AI, has become accessible for the masses. This is an unprecedented paradigm shift not only because of the use of AI becoming more widespread but also due to the possible implications of LLMs in health care. As more patients and medical professionals use AI-based tools, LLMs being the most popular representatives of that group, it seems inevitable to address the challenge to improve this skill. This paper summarizes the current state of research about prompt engineering and, at the same time, aims at providing practical recommendations for the wide range of health care professionals to improve their interactions with LLMs. %M 37792434 %R 10.2196/50638 %U https://www.jmir.org/2023/1/e50638 %U https://doi.org/10.2196/50638 %U http://www.ncbi.nlm.nih.gov/pubmed/37792434 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e47109 %T Transient Elastography and Video Recovery Narrative Access to Support Recovery From Alcohol Misuse: Development of a Novel Intervention for Use in Community Alcohol Treatment Services %A Rennick-Egglestone,Stefan %A Subhani,Mohsan %A Knight,Holly %A Jones,Katy A %A Hutton,Clare %A Jackson,Tracey %A Hutton,Matthew %A Wragg,Andrew %A Morling,Joanne R %A Sprange,Kirsty %A Ryder,Stephen D %+ School of Health Sciences, Institute of Mental Health, University of Nottingham, Triumph Road, Nottingham, NG7 2TU, United Kingdom, 44 115 82 ext 30926, stefan.egglestone@nottingham.ac.uk %K recovery narrative %K recovery story %K alcohol misuse %K alcohol use disorder %K feasibility trial %K complex intervention %K KLIFAD intervention %D 2023 %7 4.10.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Mortality from alcohol-related liver disease has risen significantly for 3 decades. Transient elastography (TE) is a noninvasive test providing a numerical marker of liver disease. Preliminary evidence suggests that TE can reduce alcohol consumption. The KLIFAD (does knowledge of liver fibrosis affect high-risk drinking behavior?) study has developed a complex intervention wherein people receiving alcohol treatment are provided with access to TE, accompanied by scripted feedback tailored to their disease state, and access to video narratives describing alcohol misuse recovery after receiving TE. Recovery narratives are included due to preliminary evidence from mental health studies which suggest that access to digital narratives describing recovery from mental health problems can help people affected by mental health problems, including through mechanisms with the potential to be transferable to an alcohol treatment setting, for example, by increasing hope for the future, enabling learning from the experience of others, or promoting help-seeking behaviors. Objective: We aimed to develop the KLIFAD intervention to the point that it could be delivered in a feasibility trial and to produce knowledge relevant to clinicians and researchers developing interventions making use of biomarkers of disease. Methods: In research activity 1, standardized scripted feedback was developed by this study, and then iterated through focus groups with people who had experienced alcohol misuse and TE, and key alcohol workers with experience in delivering TE. We report critical design considerations identified through focus groups, in the form of sensitizing concepts. In research activity 2, a video production guide was coproduced to help produce impactful video-based recovery narratives, and a patient and public involvement (PPI) panel was consulted for recommendations on how best to integrate recovery narratives into an alcohol treatment setting. We report PPI recommendations and an overview of video form and content. Results: Through research activity 1, we learnt that patient feedback has not been standardized in prior use of TE, that receiving a numeric marker can provide an objective target that motivates and rewards recovery, and that key alcohol workers regularly tailor information to their clients. Through research activity 2, we developed a video production guide asking narrators what recovery means to them, what helped their recovery, and what they have learned about recovery. We produced 10 recovery narratives and collected PPI recommendations on maximizing impact and safety. These led to the production of unplanned videos presenting caregiver and clinician perspectives, and a choice to limit narrative availability to alcohol treatment settings, where support is available around distressing content. These choices have been evaluated through a feasibility randomized controlled trial [ISRCTN16922410]. Conclusions: Providing an objective target that motivates and rewards recovery is a candidate change mechanism for complex interventions integrating biomarkers of disease. Recovery narratives can contain distressing content; intervention developers should attend to safe usage. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-054954 %M 37792440 %R 10.2196/47109 %U https://formative.jmir.org/2023/1/e47109 %U https://doi.org/10.2196/47109 %U http://www.ncbi.nlm.nih.gov/pubmed/37792440 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e44170 %T Evaluating the Acceptability and Feasibility of a Sexual Health–Focused Contraceptive Decision Aid for Diverse Young Adults: User-Centered Usability Study %A Goueth,Rose %A Darney,Blair %A Hoffman,Aubri %A Eden,Karen B %+ Department of Medical Informatics and Clinical Epidemiology, Oregon Health & Science University, 3181 SW Sam Jackson Park Road, Portland, OR, 97239, United States, 1 5034944502, gouethr@ochin.org %K decision aid %K contraception %K decision-making %K user-centered design %K young adults %K pilot study %K feasibility %K acceptability %K development %K support %K tool %K survey %K sexual health %D 2023 %7 3.10.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Young adults with low sexual health literacy levels may find it difficult to make informed decisions about contraceptive methods. We developed and pilot-tested a web-based decision aid—Healthy Sex Choices—designed to support diverse young adults with their contraceptive decision-making. Objective: This pilot study aimed to evaluate whether the Healthy Sex Choices decision aid is acceptable and feasible to patients and clinicians. Methods: We used the Ottawa Decision Support Framework and the International Patient Decision Aid Standards to develop and pilot the decision tool. We first conducted a needs assessment with our advisory panel (5 clinicians and 2 patients) that informed decision aid development. All panelists participated in semistructured interviews about their experience with contraceptive counseling. Clinicians also completed a focus group session centered around the development of sex education content for the tool. Before commencing the pilot study, 5 participants from ResearchMatch (Vanderbilt University Medical Center) assessed the tool and suggested improvements. Results: Participants were satisfied with the tool, rating the acceptability as “good.” Interviewees revealed that the tool made contraceptive decision-making easier and would recommend the tool to a family member or friend. Participants had a nonsignificant change in knowledge scores (53% before vs 45% after; P=.99). Overall, decisional conflict scores significantly decreased (16.1 before vs 2.8 after; P<.001) with the informed subscale (patients feeling more informed) having the greatest decline (23.1 vs 4.7; mean difference 19.0, SD 27.1). Subanalyses of contraceptive knowledge and decisional conflict illustrated that participants of color had lower knowledge scores (48% vs 55%) and higher decisional conflict (20.0 vs 14.5) at baseline than their white counterparts. Conclusions: Participants found Healthy Sex Choices to be acceptable and reported reduced decisional conflict after using the tool. The development and pilot phases of this study provided a foundation for creating reproductive health decision aids that acknowledge and provide guidance for diverse patient populations. %M 37788070 %R 10.2196/44170 %U https://formative.jmir.org/2023/1/e44170 %U https://doi.org/10.2196/44170 %U http://www.ncbi.nlm.nih.gov/pubmed/37788070 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e45695 %T Web-Based STI/HIV Testing Services Available for Access in Australia: Systematic Search and Analysis %A Cardwell,Ethan Trey %A Ludwick,Teralynn %A Fairley,Christopher %A Bourne,Christopher %A Chang,Shanton %A Hocking,Jane S %A Kong,Fabian Y S %+ Melbourne School of Population and Global Health, University of Melbourne, 207 Bouverie Street, Melbourne, 3053, Australia, 61 3 9035 3039, t.cardwell@unimelb.edu.au %K STI/HIV testing %K STI/HIV %K self-testing %K sexual health %K web-based STI testing %K web-based STI/HIV testing %D 2023 %7 22.9.2023 %9 Original Paper %J J Med Internet Res %G English %X 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 (~4 days) than for SS (~12 days) and ST (~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. %M 37738083 %R 10.2196/45695 %U https://www.jmir.org/2023/1/e45695 %U https://doi.org/10.2196/45695 %U http://www.ncbi.nlm.nih.gov/pubmed/37738083 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e44129 %T Impact of Digital Media on the Patient Journey and Patient-Physician Relationship Among Dermatologists and Adult Patients With Skin Diseases: Qualitative Interview Study %A Schick,Teresa Sofie %A Höllerl,Lea %A Biedermann,Tilo %A Zink,Alexander %A Ziehfreund,Stefanie %+ Department of Dermatology and Allergy, School of Medicine, Technical University of Munich, Biedersteiner Str 29, Munich, 80802, Germany, 49 8941403198, stefanie.ziehfreund@tum.de %K digital media %K dermatology %K patient journey %K patient-physician relationship %K semistructured interview %K qualitative content analysis %D 2023 %7 22.9.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Digital media are easily accessible without time restrictions and are widely used for health- or disease-related purposes. However, their influence on the patient journey and the patient-physician relationship has not yet been sufficiently investigated. Objective: This qualitative interview study was designed to explore dermatologists’ and patients’ experiences with digital media for medical purposes in the context of patient journeys and patient-physician relationships. Methods: Twenty-eight semistructured video conference–based interviews were conducted and audiorecorded by experienced interviewers between November 2021 and June 2022 in Germany. Eligible patients were those who were aged ≥18 years, were affected by at least one physician-confirmed skin disease, and were fluent in the German language. The eligibility criterion for dermatologists was that they were currently practicing dermatology in an outpatient setting or in a hospital. Randomly selected dermatologists from the listing of the German National Association of Statutory Health Insurance Physicians and dermatologists from personal academic and professional networks were invited for participation via postal mail and asked to identify potential patient volunteers from their patient bases. All recorded data were pseudonymized, fully transcribed verbatim, and subsequently analyzed according to Mayring’s qualitative content analysis by 2 researchers, allowing for both a qualitative interview text analysis and a quantitative assessment of category assignments. Results: In total, 28 participants were interviewed: 16 adult patients and 12 dermatologists. Eight main categories emerged as key areas of interest: (1) the search for diagnosis and symptom triggers, (2) preconsultation digital media use, (3) in-depth information and exchange with other patients, (4) self-treatment, (5) patient-physician interaction, (6) roles of dermatologists and patients, (7) patient eHealth literacy, and (8) opportunities and risks. Categories 1 and 2 were only coded for patients; the other categories were coded for both patients and dermatologists. Patients reported searches for diagnosis or treatment options were most frequently (8/16) caused by a mismatch of symptoms and diagnosis or dissatisfaction with current therapies. Concerns regarding a potentially severe diagnosis prompted searches for initial or in-depth information before or after dermatological consultations. However, the large volume of information of varying quality often confused patients, leading dermatologists to assume the role of evaluating information from preinformed patients. Dermatologists generally encouraged the use of digital media, considered teledermatology advantageous, and viewed big data and artificial intelligence as being potentially beneficial, particularly when searching for rare diagnoses. A single, easily accessible, and free-of-charge platform with high quality information in lay language was recommended by the dermatologists and desired by patients. Conclusions: Digital media are widely accepted by both patients and dermatologists and can positively influence both the dermatological patient journey and patient-physician relationship. Digital media may therefore have great potential to improve specialized health care if patients and dermatologists embrace their new roles. %M 37738078 %R 10.2196/44129 %U https://www.jmir.org/2023/1/e44129 %U https://doi.org/10.2196/44129 %U http://www.ncbi.nlm.nih.gov/pubmed/37738078 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e43632 %T Patients’ Views on AI for Risk Prediction in Shared Decision-Making for Knee Replacement Surgery: Qualitative Interview Study %A Gould,Daniel J %A Dowsey,Michelle M %A Glanville-Hearst,Marion %A Spelman,Tim %A Bailey,James A %A Choong,Peter F M %A Bunzli,Samantha %+ St Vincent's Hospital, Department of Surgery, University of Melbourne, 29 Regent Street, Melbourne, 3065, Australia, 61 9231 3955, daniel.gould@unimelb.edu.au %K artificial intelligence %K qualitative research %K semistructured interviews %K knee replacement %K risk prediction %K patient perception %K patient understanding %K patient preference %K patient perspective %D 2023 %7 18.9.2023 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 37721797 %R 10.2196/43632 %U https://www.jmir.org/2023/1/e43632 %U https://doi.org/10.2196/43632 %U http://www.ncbi.nlm.nih.gov/pubmed/37721797 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e47409 %T Identifying the Information Needs and Format Preferences for Web-Based Content Among Adults With or Parents of Children With Attention-Deficit/Hyperactivity Disorder: Three-Stage Qualitative Analysis %A Scholze,Danielle A %A Gosdin,Melissa M %A Perez,Susan L %A Schweitzer,Julie B %+ Department of Psychiatry and Behavioral Sciences, University of California, Davis, 2825 50th St, Sacramento, CA, 95817, United States, 1 916 703 0450, jschweitzer@ucdavis.edu %K ADHD %K pediatric %K adult %K mobile phone %K developmental disorder %K neurodevelopmental %K mental disorder %K information-seeking %K information need %K attention deficit disorder %K hyperactive %K hyperactivity %K interview %K focus group %K think-aloud %K web-based %K online content %K user experience %K information behavior %K web design %D 2023 %7 11.9.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Attention-deficit/hyperactivity disorder (ADHD) is a highly prevalent childhood and adult behavioral disorder. Internet searches for ADHD information are rising, particularly for diagnosis and treatment. Despite effective ADHD treatments, research suggests that there are delays in seeking help for ADHD. Identifying ways to shorten delays is important for minimizing morbidity associated with ADHD. One way to shorten these delays is to improve internet health information resources. Research shows that parents of children with ADHD feel that much of the information available is technical and not tailored for their child’s needs and verbal instructions given by health care providers were too pharmacologically focused with limited information about how to manage and support ADHD symptoms in daily living. A majority of parents search the internet for general and pharmacological information for ADHD and prefer web-based resources for learning about ADHD, but web-based resources may be inaccurate and of low quality. Ensuring accurate information through the internet is an important step in assisting parents and adults in making informed decisions about the diagnosis and treatment of ADHD. Objective: Although a great deal of information regarding ADHD is available on the internet, some information is not based on scientific evidence or is difficult for stakeholders to understand. Determining gaps in access to accurate ADHD information and stakeholder interest in the type of information desired is important in improving patient engagement with the health care system, but minimal research addresses these needs. This study aims to determine the information needs and formatting needs of web-based content for adults with ADHD and parents of children with ADHD in order to improve user experience and engagement. Methods: This was a 3-phase study consisting of in-depth phone interviews about experiences with ADHD and barriers searching for ADHD-related information, focus groups where participants were instructed to consider the pathways by which they made decisions using web-based resources, and observing participants interacting with a newly developed website tailored for adults with potential ADHD and caregivers of children who had or might have ADHD. Phase 1 individual interviews and phase 2 focus groups identified the needs of the ADHD stakeholders related to website content and format. Interview and focus group findings were used to develop a website. Phase 3 used think-aloud interviews to evaluate website usability to inform the tailoring of the website based on user feedback. Results: Interviews and focus group findings revealed preferences for ADHD website information and content, website layout, and information sources. Themes included a preference for destigmatizing information about ADHD, information specific to patient demographics, and evidence-based information tailored to lay audiences. Conclusions: ADHD stakeholders are specifically seeking positive information about ADHD presented in a user-friendly format. %M 37695648 %R 10.2196/47409 %U https://formative.jmir.org/2023/1/e47409 %U https://doi.org/10.2196/47409 %U http://www.ncbi.nlm.nih.gov/pubmed/37695648 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e46865 %T Colorectal Cancer Screening Decision Based on Predicted Risk: Protocol for a Pilot Randomized Controlled Trial %A Plys,Ekaterina %A Bulliard,Jean-Luc %A Chaouch,Aziz %A Durand,Marie-Anne %A van Duuren,Luuk A %A Brändle,Karen %A Auer,Reto %A Froehlich,Florian %A Lansdorp-Vogelaar,Iris %A Corley,Douglas A %A Selby,Kevin %+ Center for Primary Care and Public Health (Unisanté), University of Lausanne, Route de Berne 113, Lausanne, 1010, Switzerland, ekaterina.plys@unisante.ch %K colorectal cancer screening %K personalized screening %K risk communication %K shared decision-making %K screening behavior %K Switzerland %D 2023 %7 7.9.2023 %9 Protocol %J JMIR Res Protoc %G English %X 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% (α=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 %M 37676720 %R 10.2196/46865 %U https://www.researchprotocols.org/2023/1/e46865 %U https://doi.org/10.2196/46865 %U http://www.ncbi.nlm.nih.gov/pubmed/37676720 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 9 %N %P e48630 %T Health Information on Pre-Exposure Prophylaxis From Search Engines and Twitter: Readability Analysis %A Park,Albert %A Sayed,Fatima %A Robinson,Patrick %A Elopre,Latesha %A Ge,Yaorong %A Li,Shaoyu %A Grov,Christian %A Sullivan,Patrick Sean %+ Department of Software and Information Systems, University of North Carolina Charlotte, 9201 University City Blvd, Woodward 310H, Charlotte, NC, 28223-0001, United States, 1 704 687 8668, al.park@charlotte.edu %K pre-exposure prophylaxis %K PrEP %K health literacy %K health education materials %K readability %K prophylaxis %K health information %K electronic health education %K HIV %K infection %K Twitter %D 2023 %7 4.9.2023 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Pre-exposure prophylaxis (PrEP) is proven to prevent HIV infection. However, PrEP uptake to date has been limited and inequitable. Analyzing the readability of existing PrEP-related information is important to understand the potential impact of available PrEP information on PrEP uptake and identify opportunities to improve PrEP-related education and communication. Objective: We examined the readability of web-based PrEP information identified using search engines and on Twitter. We investigated the readability of web-based PrEP documents, stratified by how the PrEP document was obtained on the web, information source, document format and communication method, PrEP modality, and intended audience. Methods: Web-based PrEP information in English was systematically identified using search engines and the Twitter API. We manually verified and categorized results and described the method used to obtain information, information source, document format and communication method, PrEP modality, and intended audience. Documents were converted to plain text for the analysis and readability of the collected documents was assessed using 4 readability indices. We conducted pairwise comparisons of readability based on how the PrEP document was obtained on the web, information source, document format, communication method, PrEP modality, and intended audience, then adjusted for multiple comparisons. Results: A total of 463 documents were identified. Overall, the readability of web-based PrEP information was at a higher level (10.2-grade reading level) than what is recommended for health information provided to the general public (ninth-grade reading level, as suggested by the Department of Health and Human Services). Brochures (n=33, 7% of all identified resources) were the only type of PrEP materials that achieved the target of ninth-grade reading level. Conclusions: Web-based PrEP information is often written at a complex level for potential and current PrEP users to understand. This may hinder PrEP uptake for some people who would benefit from it. The readability of PrEP-related information found on the web should be improved to align more closely with health communication guidelines for reading level to improve access to this important health information, facilitate informed decisions by those with a need for PrEP, and realize national prevention goals for PrEP uptake and reducing new HIV infections in the United States. %M 37665621 %R 10.2196/48630 %U https://publichealth.jmir.org/2023/1/e48630 %U https://doi.org/10.2196/48630 %U http://www.ncbi.nlm.nih.gov/pubmed/37665621 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e46571 %T Evaluation of the Rosa Chatbot Providing Genetic Information to Patients at Risk of Hereditary Breast and Ovarian Cancer: Qualitative Interview Study %A Siglen,Elen %A Vetti,Hildegunn Høberg %A Augestad,Mirjam %A Steen,Vidar M %A Lunde,Åshild %A Bjorvatn,Cathrine %+ Western Norway Familial Cancer Center, Department of Medical Genetics, Haukeland University Hospital, Jonas Lies veg 61, Bergen, 5021, Norway, 47 99569845, elen.siglen@helse-bergen.no %K chatbot %K chatbots %K genetic %K trust %K acceptability %K perception %K perceived %K genetic counseling %K hybrid health care %K digital health tool %K digital information tool %K digital health technology %K virtual assistant %K hereditary breast and ovarian cancer %K hereditary %K genetic testing %K technology %K genetic clinic %K digital tool %K ovarian cancer %K breast cancer %K information retrieval %K women’s health %K breast %K ovarian %K cancer %K oncology %K mobile phone %D 2023 %7 1.9.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Genetic testing has become an integrated part of health care for patients with breast or ovarian cancer, and the increasing demand for genetic testing is accompanied by an increasing need for easy access to reliable genetic information for patients. Therefore, we developed a chatbot app (Rosa) that is able to perform humanlike digital conversations about genetic BRCA testing. Objective: Before implementing this new information service in daily clinical practice, we wanted to explore 2 aspects of chatbot use: the perceived utility and trust in chatbot technology among healthy patients at risk of hereditary cancer and how interaction with a chatbot regarding sensitive information about hereditary cancer influences patients. Methods: Overall, 175 healthy individuals at risk of hereditary breast and ovarian cancer were invited to test the chatbot, Rosa, before and after genetic counseling. To secure a varied sample, participants were recruited from all cancer genetic clinics in Norway, and the selection was based on age, gender, and risk of having a BRCA pathogenic variant. Among the 34.9% (61/175) of participants who consented for individual interview, a selected subgroup (16/61, 26%) shared their experience through in-depth interviews via video. The semistructured interviews covered the following topics: usability, perceived usefulness, trust in the information received via the chatbot, how Rosa influenced the user, and thoughts about future use of digital tools in health care. The transcripts were analyzed using the stepwise-deductive inductive approach. Results: The overall finding was that the chatbot was very welcomed by the participants. They appreciated the 24/7 availability wherever they were and the possibility to use it to prepare for genetic counseling and to repeat and ask questions about what had been said afterward. As Rosa was created by health care professionals, they also valued the information they received as being medically correct. Rosa was referred to as being better than Google because it provided specific and reliable answers to their questions. The findings were summed up in 3 concepts: “Anytime, anywhere”; “In addition, not instead”; and “Trustworthy and true.” All participants (16/16) denied increased worry after reading about genetic testing and hereditary breast and ovarian cancer in Rosa. Conclusions: Our results indicate that a genetic information chatbot has the potential to contribute to easy access to uniform information for patients at risk of hereditary breast and ovarian cancer, regardless of geographical location. The 24/7 availability of quality-assured information, tailored to the specific situation, had a reassuring effect on our participants. It was consistent across concepts that Rosa was a tool for preparation and repetition; however, none of the participants (0/16) supported that Rosa could replace genetic counseling if hereditary cancer was confirmed. This indicates that a chatbot can be a well-suited digital companion to genetic counseling. %M 37656502 %R 10.2196/46571 %U https://www.jmir.org/2023/1/e46571 %U https://doi.org/10.2196/46571 %U http://www.ncbi.nlm.nih.gov/pubmed/37656502 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e45287 %T Evaluation Strategies for Understanding Experiences With Virtual Care in Canada: Mixed Methods Study %A Vanderhout,Shelley %A Goldbloom,Ellen B %A Li,Amy %A Newhook,Dennis %A Garcia,Meghan %A Dulude,Catherine %+ Children’s Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, ON, K1H8L1, Canada, 1 613 282 2038 ext 1545, cdulude@cheo.on.ca %K environmental scan %K experience %K interviews %K pediatrics %K telemedicine %K virtual care %D 2023 %7 30.8.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Virtual care was rapidly integrated into pediatric health services during the COVID-19 pandemic. While virtual care offers many benefits, it is necessary to better understand the experiences of those who receive, deliver, and coordinate virtual care in order to support sustainable, high-quality, and patient-centered health care. To date, methods implemented to evaluate users’ experiences of virtual care have been highly variable, making comparison and data synthesis difficult. Objective: This study aims to describe evaluation strategies currently used to understand personal experiences with pediatric virtual care in Canada. Methods: In this mixed methods environmental scan, we first distributed a web-based questionnaire to clinical, research, and operational leaders delivering and evaluating pediatric virtual care in Canada. The questionnaire collected information about how experiences with virtual care have been or are currently being evaluated and whether these evaluations included the perspectives of children or youth, families, providers, or support staff. Second, respondents were asked to share the questions they used in their evaluations, and a content analysis was performed to identify common question categories. Third, we conducted semistructured interviews to further explore our respondents’ evaluation experiences across 4 domains—evaluation approaches, distribution methods, response rates, and lessons learned—and interest in a core set of questions for future evaluations. Results: There were 72 respondents to the web-based questionnaire; among those who had conducted an evaluation, we identified 15 unique evaluations, and 14 of those provided a copy of the tools used to evaluate virtual care. These evaluations measured the virtual care experiences of parents or caregivers (n=15, 100%), children or youth (n=11, 73%), health care providers (n=11, 73%), and support staff (n=4, 27%). The most common data collection method used was electronic questionnaires distributed by email. Two respondents used validated tools; the remainder modified existing tools or developed new tools. Content analysis of the 14 submitted questionnaires revealed that the most common questions were about overall participant satisfaction, the comparison of virtual care to in-person care, and whether participants would choose virtual care options in the future. Interview findings indicate respondents frequently relied on methods used by peers and that a standardized, core set of questions to evaluate experiences with virtual care would be helpful to improve evaluation practices and support pediatric health care delivery. Conclusions: At our institution and elsewhere in Canada, experiences with pediatric virtual care have been evaluated using a variety of methods. A more consistent evaluation approach using standardized tools may enable more regular comparisons of experiences with virtual care and the synthesis of findings across health care settings. In turn, this may better inform our approach to virtual care, improve its integration into health systems, and facilitate sustainable, high-quality, patient-centered care. %M 37647120 %R 10.2196/45287 %U https://www.jmir.org/2023/1/e45287 %U https://doi.org/10.2196/45287 %U http://www.ncbi.nlm.nih.gov/pubmed/37647120 %0 Journal Article %@ 2563-3570 %I JMIR Publications %V 4 %N %P e45370 %T User and Usability Testing of a Web-Based Genetics Education Tool for Parkinson Disease: Mixed Methods Study %A Han,Noah %A Paul,Rachel A %A Bardakjian,Tanya %A Kargilis,Daniel %A Bradbury,Angela R %A Chen-Plotkin,Alice %A Tropea,Thomas F %+ Department of Neurology, Perelman School of Medicine, University of Pennsylvania, 330 South 9th Street, Philadelphia, PA, 19107, United States, 1 215 829 7731, Thomas.Tropea@pennmedicine.upenn.edu %K Parkinson disease %K genetic testing %K teleneurology %K patient education %K neurology %K genetic %K usability %K user testing %K web-based %K internet-based %K web-based resource %K mobile phone %D 2023 %7 30.8.2023 %9 Original Paper %J JMIR Bioinform Biotech %G English %X 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. %R 10.2196/45370 %U https://bioinform.jmir.org/2023/1/e45370 %U https://doi.org/10.2196/45370 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e42921 %T Web-Based Video Education to Improve Uptake of Influenza Vaccination and Other Preventive Health Recommendations in Adults With Inflammatory Bowel Disease: Randomized Controlled Trial of Project PREVENT %A Long,Millie D %A van Deen,Welmoed K %A Weisbein,Laura %A Khalil,Carine %A Appel,Keren L %A Zhang,Xian %A Chen,Wenli %A Zubrod,Lori %A Maris,Robbie %A Ghafari,Afsoon %A Dupuy,Taylor %A Ha,Christina Y %A Spiegel,Brennan M R %A Almario,Christopher V %A Melmed,Gil Y %+ Division of Gastroenterology and Hepatology, University of North Carolina School of Medicine, University of Chapel Hill, 130 Mason Farm Rd, University of North Carolina at Chapel Hill, Chapel Hill, NC, 27599-7080, United States, 1 919 962 2211, millie_long@med.unc.edu %K preventative %K education %K inflammatory bowel disease (IBD) %K education %K adults %K inflammation %K disease %K risk %K infections %K bone %K cancer %K development %K patient %K interview %K intervention %K prevention %K vaccination %K influenza %D 2023 %7 23.8.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Patients with inflammatory bowel disease (IBD) are at increased risk of infections, bone fractures, and skin cancers. Objective: We developed preventive health videos using a patient-centered approach and tested their impact on preventive health uptake. Methods: Five animated videos explaining preventive health recommendations in IBD were iteratively developed with patient-centered focus groups and interviews. A randomized controlled trial was then conducted in a web-based IBD cohort to test the impact of video- versus text-based educational interventions. The primary outcome was receipt of the influenza vaccine. Secondary outcomes included intention to receive other preventive health services. Results: Five animated videos were developed with patient input. A total of 1056 patients with IBD were then randomized to receive the video (n=511) or text-only (n=545) interventions; 55% (281/511) of the video group and 57% (311/545) of the text-only group had received their influenza vaccine in the prior year. Immediately after the intervention, 73% (502/683) of patients reported their intention to receive the vaccine, with no difference by the type of intervention (75%, 231/307, for the video group and 72%, 271/376, for the text-only group). The proportion of patients who actually received the influenza vaccine after the intervention also did not differ by messaging type (P=.07). The strongest predictor of both intention to receive and actual receipt of the influenza vaccine was prior influenza vaccination. Older age was also associated with a higher likelihood of the intention to receive (age 36-75 years relative to 18-35 years; P=.006) and actual receipt (age >75 years relative to 18-35 years; P=.05) of the influenza vaccine. Conclusions: The proportion of patients receiving the influenza vaccine was high in both groups, but there was no difference in receipt of or in the intention to receive preventive health recommendations by type of messaging. Notably, a portion of patients in both groups had intended to be vaccinated but did not ultimately receive the vaccine. Further evaluation of patient-education strategies is warranted to improve preventive health uptake among patients with IBD. Trial Registration: ClinicalTrials.gov NCT05997537; https://clinicaltrials.gov/ct2/show/NCT05997537 %M 37610821 %R 10.2196/42921 %U https://www.jmir.org/2023/1/e42921 %U https://doi.org/10.2196/42921 %U http://www.ncbi.nlm.nih.gov/pubmed/37610821 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e47574 %T User-Centered Design and Evaluation of Clinical Decision Support to Improve Early Peanut Introduction: Formative Study %A Nguyen,Thinh Hoang %A Cunha,Priscila Pereira %A Rowland,Annabelle Friedman %A Orenstein,Evan %A Lee,Tricia %A Kandaswamy,Swaminathan %+ Department of Pediatrics, Emory University School of Medicine, 2015 Uppergate Dr, Atlanta, GA, 30322, United States, 1 443 720 9337, swaminathan.kandaswamy@emory.edu %K clinical decision support %K peanut %K peanut introduction %K early peanut introduction %K allergy %K electronic health records %K simulation %K user-centered design %D 2023 %7 22.8.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Peanut allergy has recently become more prevalent. Peanut introduction recommendations have evolved from suggesting peanut avoidance until the age of 3 years to more recent guidelines encouraging early peanut introduction after the Learning Early about Peanut Allergy (LEAP) study in 2015. Guideline adherence is poor, leading to missed care opportunities. Objective: In this study, we aimed to develop a user-centered clinical decision support (CDS) tool to improve implementation of the most recent early peanut introduction guidelines in the primary care clinic setting. Methods: We edited the note template of the well-child check (WCC) visits at ages 4 and 6 months with CDS prompts and point-of-care education. Formative and summative usability testing were completed with pediatric residents in a simulated electronic health record (EHR). We estimated task completion rates and perceived usefulness of the CDS in summative testing, comparing a test EHR with and without the CDS. Results: Formative usability testing with the residents provided qualitative data that led to improvements in the build for both the 4-month and 6-month WCC note templates. During summative usability testing, the CDS tool significantly improved discussion of early peanut introduction at the 4-month WCC visit compared to scenarios without the CDS tool (9/15, 60% with CDS and 0/15, 0% without CDS). All providers except one at the 4-month WCC scenario gave at least an adequate score for the ease of use of the CDS tool for the history of present illness and assessment and plan sections. During the summative usability testing with the 6-month WCC new build note template, providers more commonly provided comprehensive care once obtaining a patient history concerning for an immunoglobulin E–mediated peanut reaction by placing a referral to allergy/immunology (P=.48), prescribing an epinephrine auto-injector (P=.07), instructing on how to avoid peanut products (P<.001), and providing an emergency treatment plan (P=.003) with CDS guidance. All providers gave at least an adequate score for ease of use of the CDS tool in the after-visit summary. Conclusions: User-centered CDS improved application of early peanut introduction recommendations and comprehensive care for patients who have symptoms concerning for peanut allergy in a simulation. %M 37606983 %R 10.2196/47574 %U https://formative.jmir.org/2023/1/e47574 %U https://doi.org/10.2196/47574 %U http://www.ncbi.nlm.nih.gov/pubmed/37606983 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e47298 %T 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 %A Goueth,Rose %A Holt,Kelsey %A Eden,Karen B %A Hoffman,Aubri %+ Department of Medical Informatics and Clinical Epidemiology, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR, 97329, United States, 1 5034944502, gouethr@ochin.org %K contraceptive counseling %K qualitative study %K decision making %K decision aids %K clinician engagement %K user-centered design %K contraceptive %K birth control %K clinicians’ perspectives %K patient-centered counseling %K sexual health %K family planning %D 2023 %7 21.8.2023 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 37603407 %R 10.2196/47298 %U https://formative.jmir.org/2023/1/e47298 %U https://doi.org/10.2196/47298 %U http://www.ncbi.nlm.nih.gov/pubmed/37603407 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e38965 %T Impact of Beliefs About Local Physician Supply and Self-Rated Health on Willingness to See a Nurse Practitioner During the COVID-19 Pandemic: Web-Based Survey and Experiment %A Campos-Castillo,Celeste %+ Department of Media and Information, Michigan State University, 404 Wilson Rd, East Lansing, MI, 48824, United States, 1 517 432 5192, camposca@msu.edu %K primary care shortage %K workforce %K health care seeking %K public opinion %K consumers %K online studies %K COVID-19 %K pandemic %K primary care %K nurse practitioners %K nurse %K healthcare %K resources %K advocacy %D 2023 %7 16.8.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: The COVID-19 pandemic overburdened primary care clinicians. For nurse practitioners (NPs) to alleviate the burden, the public must be willing to see an NP over a physician. Those with poor health tended to continue seeking care during the pandemic, suggesting that they may be willing to see an NP. Objective: The aim of this study is to evaluate the public’s willingness to see an NP for primary care and how this may be associated with their beliefs about the local supply of physicians and self-rated health. Two studies were conducted: (1) a survey to identify correlations and (2) an experiment to assess how willingness is dependent on information about the local supply of physicians. Methods: The survey and experiment were conducted digitally in April and December 2020, respectively. Participants were US adults recruited from Amazon’s Mechanical Turk platform. The key independent variables were self-rated health, which was a dichotomized 5-point scale (excellent, very good, good vs fair, and poor), and beliefs about local physician supply. The survey measured beliefs about local physician supply, while the experiment manipulated beliefs by altering information the participants read about the local supply of physicians. Willingness to see an NP was assessed in 2 ways. First as an overall preference over a physician and the second as a preference given 2 clinically significant scenarios in which participants imagined they were experiencing either coughing or a headache (presentation order randomized). Multiple regressions and ANOVAs were used to assess how beliefs about the local physician supply and self-rated health were associated with overall willingness to see an NP. Bivariate probits simultaneously estimated willingness to see an NP in the 2 clinically significant scenarios. Results: The survey showed that concerns about physician supply were associated with lower willingness to see an NP among respondents with comparatively better health but a greater willingness among respondents with comparatively worse health. The experiment suggests that only the latter is causal. For the 2 clinically significant scenarios, these patterns appeared for the coughing scenario in the survey and the headache scenario in the experiment. Conclusions: US adults with comparatively worse self-rated health become more willing to see an NP for primary care when they hear information that raises their concerns about the local physician supply. The differences between the survey and experiment results may be useful for interpreting findings from future studies. Findings may aid in managing finite health care resources during public health crises and crafting successful messaging by NP advocacy groups. Efforts to address nursing shortages will also be needed. %M 37347928 %R 10.2196/38965 %U https://formative.jmir.org/2023/1/e38965 %U https://doi.org/10.2196/38965 %U http://www.ncbi.nlm.nih.gov/pubmed/37347928 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e40157 %T Effectiveness of a Web-Based Intervention for Preventing Substance Use in Young Adults in Taiwan: Quasi-Experimental Study %A Chang,Yen-Jung %A Chen,Jhong-Lin %+ Department of Health Promotion and Health Education, National Taiwan Normal University, 162, Section 1, Heping E. Rd., Taipei, 106, Taiwan, 886 2 7749 1733, yjchang@ntnu.edu.tw %K controlled substances %K health education %K illicit drugs %K prevention %K substance use %K web-based intervention %K young adults %D 2023 %7 14.8.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Substance use has been one of the most alarming public health problems worldwide, particularly among younger generations. Objective: This study evaluated the effectiveness of a web-based substance use prevention intervention targeted at adults aged 20-29 years. Methods: The intervention materials comprised 5 sets of infographics and 1 animation, all of which focused on mixed themes: (1) the concept of substance use and its harmful effects on health; (2) misinformation regarding new psychoactive substances; (3) regulation of illicit drugs, particularly marijuana; (4) the brain disease model of addiction; (5) critical thinking skills that improve health literacy; and (6) decision-making and communication skills that help people refuse illegal drugs. The study assigned eligible participants into experimental and control groups on the basis of the parity of their participant numbers. These participants completed web-based baseline and follow-up questionnaires that assessed their knowledge, behavioral intention, self-efficacy, and life skills related to substance use prevention. Knowledge was assessed using 8 questions concerning understanding of substance use harms and the regulation of illicit drugs. Behavioral intention and self-efficacy were assessed using 5-point Likert-type scales. Participants’ ability to apply life skills to avoid substance use was assessed using 3 testing scenarios regarding substance use. The study used generalized estimating equations to examine the intervention’s effectiveness. Results: A total of 1065 participants (539 control and 526 experimental) completed the intervention and questionnaires in 2019. The average ages of the experimental and control groups were 25.68 (SD 2.71) and 25.66 (SD 2.69) years, respectively. The study observed no significant differences in the demographic variables between the 2 groups. The results of the generalized estimating equation analyses indicated that the intervention significantly improved participants’ knowledge (P<.001), behavioral intention (P<.001), and self-efficacy (P<.001) but not their life skills (P=.61) related to substance use prevention. Participants in the experimental group responded to a satisfaction survey with positive feedback on the intervention. Conclusions: The web-based intervention was effective in improving participants’ knowledge, behavioral intention, and self-efficacy concerning substance use prevention. The findings support continued efforts to use web-based interventions to prevent substance use among young adults. %M 37578821 %R 10.2196/40157 %U https://www.jmir.org/2023/1/e40157 %U https://doi.org/10.2196/40157 %U http://www.ncbi.nlm.nih.gov/pubmed/37578821 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 6 %N %P e45384 %T Acceptance of Telemedicine Compared to In-Person Consultation From the Providers' and Users’ Perspectives: Multicenter, Cross-Sectional Study in Dermatology %A Maul,Lara Valeska %A Jahn,Anna Sophie %A Pamplona,Gustavo S P %A Streit,Markus %A Gantenbein,Lorena %A Müller,Simon %A Nielsen,Mia-Louise %A Greis,Christian %A Navarini,Alexander A %A Maul,Julia-Tatjana %+ Department of Dermatology, University Hospital Basel, Burgfelderstrasse 101, Basel, 4055, Switzerland, 41 61 265 40 80, laravaleska.maul@usb.ch %K acceptance %K patient %K physician %K satisfaction %K teledermatology %D 2023 %7 11.8.2023 %9 Original Paper %J JMIR Dermatol %G English %X Background: Teledermatology is currently finding its place in modern health care worldwide as a rapidly evolving field. Objective: The aim of this study was to investigate the acceptance of teledermatology compared to in-person consultation from the perspective of patients and professionals. Methods: This multicenter, cross-sectional pilot study was performed at secondary and tertiary referral centers of dermatology in Switzerland from August 2019 to January 2020. A customized questionnaire addressing demographics and educational data, experience with telemedicine, and presumed willingness to replace in-patient consultations with teledermatology was completed by dermatological patients, dermatologists, and health care workers in dermatology. Results: Among a total of 664 participants, the ones with previous telemedicine experience (171/664, 25.8%) indicated a high level of overall experience with it (patients: 73/106, 68.9%, dermatologists: 6/8, 75.0%, and health care workers: 27/34, 79.4%). Patients, dermatologists, and health care workers were most likely willing to replace in-person consultations with teledermatology for minor health issues (353/512, 68.9%; 37/45, 82.2%; and 89/107, 83.2%, respectively). We observed a higher preference for telemedicine among individuals who have already used telemedicine (patients: P<.001, dermatologists: P=.03, and health care workers, P=.005), as well as among patients with higher educational levels (P=.003). Conclusions: This study indicates that the preference for teledermatology has a high potential to increase over time since previous experience with telemedicine and a higher level of education were associated with a higher willingness to replace in-patient consultations with telemedicine. We assume that minor skin problems are the most promising issue in teledermatology. Our findings emphasize the need for dermatologists to be actively involved in the transition to teledermatology. Trial Registration: ClinicalTrials.gov NCT04495036; https://classic.clinicaltrials.gov/ct2/show/NCT04495036 %M 37582265 %R 10.2196/45384 %U https://derma.jmir.org/2023/1/e45384 %U https://doi.org/10.2196/45384 %U http://www.ncbi.nlm.nih.gov/pubmed/37582265 %0 Journal Article %@ 2564-1891 %I JMIR Publications %V 3 %N %P e40003 %T YouTube Videos on Nutrition and Dental Caries: Content Analysis %A Long,Memphis %A Forbes,Laura E %A Papagerakis,Petros %A Lieffers,Jessica R L %+ College of Pharmacy and Nutrition, University of Saskatchewan, 105 Wiggins Road, Saskatoon, SK, S7N 5E5, Canada, 1 3069668594, jessica.lieffers@usask.ca %K dental caries %K diet %K nutrition %K YouTube %K internet %K consumer health information %D 2023 %7 10.8.2023 %9 Original Paper %J JMIR Infodemiology %G English %X Background: Dental caries is the most common health condition worldwide, and nutrition and dental caries have a strong interconnected relationship. Foods and eating behaviors can be both harmful (eg, sugar) and healthful (eg, meal spacing) for dental caries. YouTube is a popular source for the public to access information. To date, there is no information available on the nutrition and dental caries content of easily accessible YouTube videos. Objective: This study aimed to analyze the content of YouTube videos on nutrition and dental caries. Methods: In total, 6 YouTube searches were conducted using keywords related to nutrition and dental caries. The first 20 videos were selected from each search. Video content was scored (17 possible points; higher scores were associated with more topics covered) by 2 individuals based on the inclusion of information regarding various foods and eating behaviors that impact dental caries risk. For each video, information on video characteristics (ie, view count, length, number of likes, number of dislikes, and video age) was captured. Videos were divided into 2 groups by view rate (views/day); differences in scores and types of nutrition messages between groups were determined using nonparametric statistics. Results: In total, 42 videos were included. Most videos were posted by or featured oral health professionals (24/42, 57%). The mean score was 4.9 (SD 3.4) out of 17 points. Videos with >30 views/day (high view rate; 20/42, 48% videos) had a trend toward a lower score (mean 4.0, SD 3.7) than videos with ≤30 views/day (low view rate; 22/42, 52%; mean 5.8, SD 3.0; P=.06), but this result was not statistically significant. Sugar was the most consistently mentioned topic in the videos (31/42, 74%). No other topics were mentioned in more than 50% of videos. Low–view rate videos were more likely to mention messaging on acidic foods and beverages (P=.04), water (P=.09), and frequency of sugar intake (P=.047) than high–view rate videos. Conclusions: Overall, the analyzed videos had low scores for nutritional and dental caries content. This study provides insights into the messaging available on nutrition and dental caries for the public and guidance on how to make improvements in this area. %M 37561564 %R 10.2196/40003 %U https://infodemiology.jmir.org/2023/1/e40003 %U https://doi.org/10.2196/40003 %U http://www.ncbi.nlm.nih.gov/pubmed/37561564 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 10 %N %P e43959 %T Usability and Preliminary Efficacy of an Artificial Intelligence–Driven Platform Supporting Dietary Management in Diabetes: Mixed Methods Study %A Bul,Kim %A Holliday,Nikki %A Bhuiyan,Mohammad Rashed Alam %A Clark,Cain C T %A Allen,John %A Wark,Petra A %+ Research Institute for Health and Wellbeing, Coventry University, Priory Street, Coventry, CV1 5FB, United Kingdom, 44 07392096816, ac2658@coventry.ac.uk %K nutrition and dietetics %K general diabetes %K qualitative research %K preventive medicine %K web technology %K self-management %K diabetes %K nutrition %K deep learning %K artificial %K mobile phone %D 2023 %7 9.8.2023 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Nutrition plays an important role in diabetes self-management. Web-based diabetes care, driven by artificial intelligence (AI), enables more personalized care. Objective: This study aimed to examine the usability and preliminary efficacy of a web-based AI-driven nutrition platform to support people with diabetes and their carers in identifying healthy recipes, meal planning, and web-based shopping. Methods: Diabetes UK signposted people with diabetes and their carers to the platform’s study-specific portal through its website, social media, and newsletters. A total of 73 adult participants with prediabetes or diabetes or their carers completed the baseline web-based survey. Of these 73 participants, 23 (32%) completed a web-based survey after 8 weeks of platform use. Web-based semistructured interviews were conducted with platform users (7/23, 30%) who agreed to be followed up and diabetes experts (n=3) who had nutrition and platform knowledge. The intervention consists of a web-based platform that incorporates AI to personalize recipes, meal planning, and shopping list experiences and was made available for 8 weeks. Baseline characteristics, satisfaction, system usability, and diabetes-related and general health indicators were assessed before and after using the platform for 8 weeks. Results: Reductions in weight (mean difference 4.5 kg/m2, 95% CI 1.0-12.0; P=.009; Cliff δ=0.33) and waist size (mean difference 3.9 cm, 95% CI 2.0-6.5; P=.008; Cliff δ=0.48) were found. Most of the participants (151/217, 69.6%) did not regularly use the platform and had low or very low engagement scores. However, the platform was perceived as accessible with no need for additional assistance (11/21, 52%), user-friendly (8/21, 38%), and easy to use (8/21, 38%), regardless of some usability issues. Saving recipes was the most popular feature, with 663 saved recipes. Conclusions: This study indicated that the usability of the nutrition platform was well perceived by users and their carers. As participants managed their diabetes well, adding an education component would be specifically relevant for people less familiar with the role of diet in diabetes management. To assess the platform’s effectiveness in improving diabetes-related health indicators, controlled studies with a larger and more diverse participant sample are recommended. %M 37556198 %R 10.2196/43959 %U https://humanfactors.jmir.org/2023/1/e43959 %U https://doi.org/10.2196/43959 %U http://www.ncbi.nlm.nih.gov/pubmed/37556198 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e46434 %T Personalized Flexible Meal Planning for Individuals With Diet-Related Health Concerns: System Design and Feasibility Validation Study %A Amiri,Maryam %A Li,Juan %A Hasan,Wordh %+ Department of Computer Science, North Dakota State University, 1320 Albrecht Blvd, Fargo, ND, 58105, United States, 1 5075134530, m.amiri@ndsu.edu %K diabetes %K fuzzy logic %K meal planning %K multicriteria decision-making %K optimization %D 2023 %7 3.8.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Chronic diseases such as heart disease, stroke, diabetes, and hypertension are major global health challenges. Healthy eating can help people with chronic diseases manage their condition and prevent complications. However, making healthy meal plans is not easy, as it requires the consideration of various factors such as health concerns, nutritional requirements, tastes, economic status, and time limits. Therefore, there is a need for effective, affordable, and personalized meal planning that can assist people in choosing food that suits their individual needs and preferences. Objective: This study aimed to design an artificial intelligence (AI)–powered meal planner that can generate personalized healthy meal plans based on the user’s specific health conditions, personal preferences, and status. Methods: We proposed a system that integrates semantic reasoning, fuzzy logic, heuristic search, and multicriteria analysis to produce flexible, optimized meal plans based on the user’s health concerns, nutrition needs, as well as food restrictions or constraints, along with other personal preferences. Specifically, we constructed an ontology-based knowledge base to model knowledge about food and nutrition. We defined semantic rules to represent dietary guidelines for different health concerns and built a fuzzy membership of food nutrition based on the experience of experts to handle vague and uncertain nutritional data. We applied a semantic rule-based filtering mechanism to filter out food that violate mandatory health guidelines and constraints, such as allergies and religion. We designed a novel, heuristic search method that identifies the best meals among several candidates and evaluates them based on their fuzzy nutritional score. To select nutritious meals that also satisfy the user’s other preferences, we proposed a multicriteria decision-making approach. Results: We implemented a mobile app prototype system and evaluated its effectiveness through a use case study and user study. The results showed that the system generated healthy and personalized meal plans that considered the user’s health concerns, optimized nutrition values, respected dietary restrictions and constraints, and met the user’s preferences. The users were generally satisfied with the system and its features. Conclusions: We designed an AI-powered meal planner that helps people create healthy and personalized meal plans based on their health conditions, preferences, and status. Our system uses multiple techniques to create optimized meal plans that consider multiple factors that affect food choice. Our evaluation tests confirmed the usability and feasibility of the proposed system. However, some limitations such as the lack of dynamic and real-time updates should be addressed in future studies. This study contributes to the development of AI-powered personalized meal planning systems that can support people’s health and nutrition goals. %M 37535413 %R 10.2196/46434 %U https://formative.jmir.org/2023/1/e46434 %U https://doi.org/10.2196/46434 %U http://www.ncbi.nlm.nih.gov/pubmed/37535413 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e44733 %T Participatory Design and Evaluation of the “Stem Cells Australia” Website for Delivering Complex Health Knowledge: Mixed Methods Study %A Pang,Patrick Cheong-Iao %A Munsie,Megan %A Chang,Shanton %A Tanner,Claire %A Walker,Christine %+ Faculty of Applied Sciences, Macao Polytechnic University, Rua de Luís Gonzaga Gomes, Macao, 999078, Macao, 853 85996886, mail@patrickpang.net %K stem cells %K health websites %K health information–seeking behavior %K complex health information %K participatory design %K public health %D 2023 %7 20.7.2023 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 37471121 %R 10.2196/44733 %U https://www.jmir.org/2023/1/e44733 %U https://doi.org/10.2196/44733 %U http://www.ncbi.nlm.nih.gov/pubmed/37471121 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 11 %N %P e47934 %T Data Analysis of Physician Competence Research Trend: Social Network Analysis and Topic Modeling Approach %A Yune,So Jung %A Kim,Youngjon %A Lee,Jea Woog %+ Intelligence Informatics Processing Lab, Chung-Ang University, 84, Heukseok-ro, Dongjak-gu,, Seoul, 06974, Republic of Korea, 82 10 5426 7318, yyizeuks@cau.ac.kr %K physician competency %K research trend %K competency-based education %K professionalism %K topic modeling %K latent Dirichlet allocation %K LDA algorithm %K data science %K social network analysis %D 2023 %7 19.7.2023 %9 Original Paper %J JMIR Med Inform %G English %X Background: Studies on competency in medical education often explore the acquisition, performance, and evaluation of particular skills, knowledge, or behaviors that constitute physician competency. As physician competency reflects social demands according to changes in the medical environment, analyzing the research trends of physician competency by period is necessary to derive major research topics for future studies. Therefore, a more macroscopic method is required to analyze the core competencies of physicians in this era. Objective: This study aimed to analyze research trends related to physicians’ competency in reflecting social needs according to changes in the medical environment. Methods: We used topic modeling to identify potential research topics by analyzing data from studies related to physician competency published between 2011 and 2020. We preprocessed 1354 articles and extracted 272 keywords. Results: The terms that appeared most frequently in the research related to physician competency since 2010 were knowledge, hospital, family, job, guidelines, management, and communication. The terms that appeared in most studies were education, model, knowledge, and hospital. Topic modeling revealed that the main topics about physician competency included Evidence-based clinical practice, Community-based healthcare, Patient care, Career and self-management, Continuous professional development, and Communication and cooperation. We divided the studies into 4 periods (2011-2013, 2014-2016, 2017-2019, and 2020-2021) and performed a linear regression analysis. The results showed a change in topics by period. The hot topics that have shown increased interest among scholars over time include Community-based healthcare, Career and self-management, and Continuous professional development. Conclusions: On the basis of the analysis of research trends, it is predicted that physician professionalism and community-based medicine will continue to be studied in future studies on physician competency. %M 37467028 %R 10.2196/47934 %U https://medinform.jmir.org/2023/1/e47934 %U https://doi.org/10.2196/47934 %U http://www.ncbi.nlm.nih.gov/pubmed/37467028 %0 Journal Article %@ 2562-7600 %I JMIR Publications %V 6 %N %P e45501 %T Experiences of a Novel Structured Foot Examination Form for Patients With Diabetes From the Perspective of Health Care Professionals: Qualitative Study %A Andersson,Susanne %A Scandurra,Isabella %A Nyström,Ulrika %A Varemo,Marika %A Hellstrand Tang,Ulla %+ Department of Prosthetics and Orthotics, Sahlgrenska University Hospital, Falkenbergsgatan 3, Gothenburg, 41285, Sweden, 46 706397913, ulla.tang@vgregion.se %K diabetes %K foot ulcer %K prevention %K primary health care %K qualitative research %K structured foot examination %K validation %K user experiences %K participatory design %D 2023 %7 18.7.2023 %9 Original Paper %J JMIR Nursing %G English %X Background: Diabetes is a growing threat to public health, and secondary diseases like foot complications are common. Foot ulcers affect the individual’s quality of life and are a great cost to society. Regular foot examinations prevent foot ulcers and are a recommended approach both in Sweden and worldwide. Despite existing guidelines, there are differences in the execution of the foot examination, which results in care inequality. A structured foot examination form based on current guidelines was developed in this study as the first step toward digitalized support in the daily routine, and was validated by diabetes health care professionals. Objective: The study aimed to validate a structured foot examination form by assessing health care professionals’ experiences of working with it “foot side” when examining patients with diabetes. Methods: Semistructured interviews were held in a focus group and individually with 8 informants from different diabetes professions, who were interviewed regarding their experiences of working with the form in clinical practice. The users’ data were analyzed inductively using qualitative content analysis. The study is part of a larger project entitled “Optimised care of persons with diabetes and foot complications,” with Västra Götaland Region as the responsible health care authority, where the results will be further developed. Results: Experiences of working with the form were that it simplified the foot examination by giving it an overview and a clear structure. Using the form made differences in work routines between individuals apparent. It was believed that implementing the form routinely would contribute to a more uniform execution. When patients had foot ulcers, the risk categories (established in guidelines) were perceived as contradictory. For example, there was uncertainty about the definition of chronic ulcers and callosities. The expectations were that the future digital format would simplify documentation and elucidate the foot examination, as well as contribute to the accessibility of updated and relevant data for all individuals concerned. Conclusions: The foot examination form works well as a support tool during preventive foot examination, creates a basis for decision-making, and could contribute to a uniform and safer foot examination with more care equality in agreement with current guidelines. Trial Registration: ClinicalTrials.gov NCT05692778; https://clinicaltrials.gov/ct2/show/NCT05692778 %M 37463012 %R 10.2196/45501 %U https://nursing.jmir.org/2023/1/e45501 %U https://doi.org/10.2196/45501 %U http://www.ncbi.nlm.nih.gov/pubmed/37463012 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e40616 %T Critical Test of the Beneficial Consequences of Lifting the Ban on Direct-to-Consumer Advertising for Prescription Drugs in Italy: Experimental Exposure and Questionnaire Study %A Schulz,Peter Johannes %A Crosignani,Francesca %A Petrocchi,Serena %+ Faculty of Communication, Culture and Society, Università della Svizzera italiana, 13 via buffi, Lugano, 6900, Switzerland, 41 586664757, peter.schulz@usi.ch %K eDTCA %K health literacy %K knowledge %K empowerment %K health information %K antidepressant %K depression %K depressive disorder %K pharmaceutical %K advertise %K advertising %K drug %K marketing %K patient education %K consumer %K health education %D 2023 %7 17.7.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: There are only two countries in the world (the United States and New Zealand) that allow the pharmaceutical branch to advertise prescription medication directly to consumers. There is pressure on governments to allow direct-to-consumer advertising (DTCA) for prescription drugs elsewhere too. One argument the industry uses frequently is the claim that exposure to DCTA, through various methods and occasions, is supposed to improve customers’ knowledge of a disease and treatment. This argument has been part of the health care community’s wider discussion of whether DTCA of prescription drugs benefits the population’s general interest or is only an attempt to increase the sales of the pharmaceutical branch. Belief in true learning by DTCA is rooted in concepts of empowered consumers and their autonomous and empowered decision-making. Objective: In this study, we tested the hypotheses that contact with DTCA increases recipients’ literacy/knowledge, especially regarding the side effects of treatment (hypothesis 1), and empowerment (hypothesis 2). We further hypothesized that DTCA exposure would not increase depression knowledge (ie, about treatments, symptoms, and prevalence) (hypothesis 3). Methods: A snowball sample of 180 participants was randomly split into three experimental groups receiving (1) a traditional information sheet, (2) a DTCA video clip for an antidepressant prescription drug, or (3) both. The video was original material from the United States translated into Italian for the experiment. Dependent variables were measures of depression knowledge (regarding treatments, symptoms and prevalence, and antidepressant side effects), depression literacy, and empowerment. Results: None of the experimental groups differed significantly from the others in the empowerment measure (hypothesis 2 not confirmed). Partial confirmation of hypothesis 1 was obtained. Lower values on the depression literacy scale were obtained when participants had been given the video compared to the sheet condition. However, the general depression knowledge and its subscale on side effects reached higher scores when participants were exposed to the DTCA, alone or in combination with the information sheet. Finally, participants showed lower scores on knowledge about treatment and symptoms or prevalence after watching the video compared to the sheet condition (hypothesis 3 confirmed). Symptoms and prevalence knowledge increased only when the video was presented in combination with the sheet. Conclusions: There is no evidence for an increase in empowerment following DTCA exposure. An increase in knowledge of the side effects of the medication was observed in the group exposed to the DTCA video. This was the only result that confirmed the hypothesis of the beneficial effect of DTCA videos on knowledge. Written information proved to be the most suitable way to convey knowledge on treatments and symptoms prevalence. Our findings support the necessity of studying health literacy and patient empowerment together and the consequences of such an increase in knowledge in terms of help-seeking behavior. %M 37459159 %R 10.2196/40616 %U https://www.jmir.org/2023/1/e40616 %U https://doi.org/10.2196/40616 %U http://www.ncbi.nlm.nih.gov/pubmed/37459159 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e37140 %T Direct and Indirect Effects of a Web-Based Educational and Communication Skills Intervention “Promotoras de Donación” to Increase Donor Designation in Latinx Communities: Evaluation Study %A Gardiner,Heather %A Siminoff,Laura %A Gordon,Elisa J %A Alolod,Gerard %A Richardson,Briana %A Schupler,Melanie %A Benitez,Amanda %A Hernandez,Ilda %A Guinansaca,Nancy %A Ramos,Lori %A Bergeron,Caroline D %A Pappaterra,Lianette %A Norden,Robert %A Daly,Theresa %+ College of Public Health, Temple University, 1101 W Montgomery Ave, 3rd Floor, Tech Center, Philadelphia, PA, 19122, United States, 1 215 204 8330, heather.gardiner@temple.edu %K Latinx %K Latino %K Latina %K Spanish %K Hispanic organ donation %K organ donor %K donor registration %K donor designation %K education %K e-learning %K digital learning %K promotoras %K program evaluation %K community outreach %K community engagement %K awareness %D 2023 %7 10.7.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Latinx populations are severely underrepresented among organ donors compared with the non-Hispanic White population. The Promotoras de Donación e-learning module was developed to train Latinx lay health educators (ie, promotoras) to discuss deceased organ donation and promote donor designation within their communities. Objective: This paper described the results of 2 studies designed to assess the direct and indirect effects of the module on promotoras’ and mature Latinas’ organ donation and donor designation knowledge, attitudes, and behaviors. Methods: In partnership with 4 community-based promotoras organizations, we designed 2 nonrandomized, quasiexperimental pragmatic studies to evaluate the Promotoras de Donación e-learning module, with participating promotoras and mature Latinas serving as their own controls. Brief surveys were administered to participating promotoras before and after module completion to assess changes in organ donation knowledge and support and communication confidence (study 1). Promotoras participating in the first study were asked to hold at least 2 group conversations about organ donation and donor designation with mature Latinas (study 2); paper-pencil surveys were completed by all participants before and after the group conversations. Descriptive statistics, means and SDs, and counts and percentages were used as appropriate to categorize the samples. Paired sample 2-tailed t test was used to assess changes in knowledge of and support for organ donation and confidence in discussing donation and promoting donor designation from pre- to posttest. Results: Overall, 40 promotoras completed this module (study 1). Increases in organ donation knowledge (mean 6.0, SD 1.9 to mean 6.2, SD 2.9) and support (mean 3.4, SD 0.9 to mean 3.6, SD 0.9) were observed from pre- to posttest; however, these changes did not reach statistical significance. A statistically significant increase in communication confidence was found (mean 692.1, SD 232.4 to mean 852.3, SD 139.7; P=.01). The module was well received, with most participants deeming it well organized, presenting new information, and providing realistic and helpful portrayals of donation conversations. A total of 52 group discussions with 375 attendees were led by 25 promotoras (study 2). The trained promotora-led group discussions about organ donation resulted in increased support for organ donation in promotoras and mature Latinas from pre- to posttest. Knowledge of the steps to become an organ donor and belief that the process is easy to perform increased in mature Latinas from pre- to posttest by 30.7% and 15.2%, respectively. In total, 5.6% (21/375) of attendees submitted completed organ donation registration forms. Conclusions: This evaluation provides preliminary support for the module’s direct and indirect effects on organ donation knowledge, attitudes, and behaviors. The need for additional modifications to and future evaluations of the module are discussed. %M 37428526 %R 10.2196/37140 %U https://www.jmir.org/2023/1/e37140 %U https://doi.org/10.2196/37140 %U http://www.ncbi.nlm.nih.gov/pubmed/37428526 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e42551 %T Adaptation and Implementation of a Shared Decision-Making Tool From One Health Context to Another: Partnership Approach Using Mixed Methods %A Turnbull,Sophie %A Walsh,Nicola E %A Moore,Andrew J %+ Population Health Sciences, University of Bristol, Canyange Hall, Bristol, BS8 2PN, United Kingdom, 44 117 928 7279, st9866@bristol.ac.uk %K shared decision-making %K implementation %K theoretical domains framework %K qualitative %K osteoarthritis %K digital %K mixed methods study %K decision-making %K disability %K treatment %K tool %K effectiveness %K acceptability %K users %K design %D 2023 %7 5.7.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Osteoarthritis is a leading cause of pain and disability. Knee osteoarthritis accounts for nearly four-fifths of the burden of osteoarthritis internationally, and 10% of adults in the United Kingdom have the condition. Shared decision-making (SDM) supports patients to make more informed choices about treatment and care while reducing inequities in access to treatment. We evaluated the experience of a team adapting an SDM tool for knee osteoarthritis and the tool’s implementation potential within a local clinical commissioning group (CCG) area in southwest England. The tool aims to prepare patients and clinicians for SDM by providing evidence-based information about treatment options relevant to disease stage. Objective: This study aimed to explore the experiences of a team adapting an SDM tool from one health context to another and the implementation potential of the tool in the local CCG area. Methods: A partnership approach using mixed methods was used to respond to recruitment challenges and ensure that study aims could be addressed within time restrictions. A web-based survey was used to obtain clinicians’ feedback on experiences of using the SDM tool. Qualitative interviews were conducted by telephone or video call with a sample of stakeholders involved in adapting and implementing the tool in the local CCG area. Survey findings were summarized as frequencies and percentages. Content analysis was conducted on qualitative data using framework analysis, and data were mapped directly to the Theoretical Domains Framework (TDF). Results: Overall, 23 clinicians completed the survey, including first-contact physiotherapists (11/23, 48%), physiotherapists (7/23, 30%), specialist physiotherapists (4/23, 17%), and a general practitioner (1/23, 4%). Eight stakeholders involved in commissioning, adapting, and implementing the SDM tool were interviewed. Participants described barriers and facilitators to the adaptation, implementation, and use of the tool. Barriers included a lack of organizational culture that supported and resourced SDM, lack of clinician buy-in and awareness of the tool, challenges with accessibility and usability, and lack of adaptation for underserved communities. Facilitators included the influence of clinical leaders’ belief that SDM tools can improve patient outcomes and National Health Service resource use, clinicians’ positive experiences of using the tool, and improving awareness of the tool. Themes were mapped to 13 of the 14 TDF domains. Usability issues were described, which did not map to the TDF domains. Conclusions: This study highlights barriers and facilitators to adapting and implementing tools from one health context to another. We recommend that tools selected for adaptation should have a strong evidence base, including evidence of effectiveness and acceptability in the original context. Legal advice should be sought regarding intellectual property early in the project. Existing guidance for developing and adapting interventions should be used. Co-design methods should be applied to improve adapted tools’ accessibility and acceptability. %M 37405845 %R 10.2196/42551 %U https://www.jmir.org/2023/1/e42551 %U https://doi.org/10.2196/42551 %U http://www.ncbi.nlm.nih.gov/pubmed/37405845 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e40477 %T Community and Health Care Provider Preferences for Bacterial Sexually Transmitted Infection Testing Interventions for Gay, Bisexual, and Other Men Who Have Sex With Men: e-Delphi Study %A Yeung,Anna %A Lisk,Ryan %A Rana,Jayoti %A Guiang,Charlie B %A Bacon,Jean %A Brunetta,Jason %A Gilbert,Mark %A Gesink,Dionne %A Grewal,Ramandip %A Kwag,Michael %A Logie,Carmen H %A Mitterni,Leo %A Shahin,Rita %A Tan,Darrell HS %A Burchell,Ann N %+ MAP Centre for Urban Health Solutions, Unity Health Toronto, 30 Bond St., Toronto, ON, M5B 1W8, Canada, 1 4168646060, ann.burchell@unityhealth.to %K sexual and gender minorities %K sexually transmitted diseases %K community-based research %K mass screening %K patient acceptance of health care %D 2023 %7 29.6.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Canadian clinical guidelines recommend at least annual and up to quarterly bacterial sexually transmitted infection (STI) testing among sexually active gay, bisexual, and other men who have sex with men (GBM). However, testing rates are suboptimal. Innovative solutions are needed to close the gap because there is currently limited knowledge on how best to approach this issue. Objective: Our aim was to build consensus regarding interventions with the greatest potential for improving local STI testing services for GBM communities in Toronto, Ontario, Canada, using a web-based e-Delphi process. Methods: The e-Delphi method involves using a panel format to conduct successive rounds of prioritization, with feedback between rounds, to determine priorities among groups. We recruited experts separately from the community (GBM who sought or underwent STI testing in the preceding 18 months; conducted between October 2019 and November 2019) and health care providers (those who offered STI testing to GBM in the past 12 months; conducted between February 2020 and May 2020). The experts prioritized 6 to 8 potential interventions on a 7-point Likert scale ranging from definitely not a priority to definitely a priority over 3 survey rounds and ranked their top 3 interventions. Consensus was defined as ≥60% within a ±1 response point. Summaries of responses were provided in successive rounds. We reported the percentage of a priority (encompassing somewhat a priority, a priority, and definitely a priority responses) at the end of the final round of the survey. Results: Of the community experts (CEs), 84% (43/51) completed all rounds; 19% (8/43) were living with HIV; 37% (16/43) were HIV negative and on pre-exposure prophylaxis; and 42% (18/43) were HIV negative and not on pre-exposure prophylaxis. We reached consensus on 6 interventions: client reminders (41/43, 95%), express testing (38/43, 88%), routine testing (36/43, 84%), an online booking app (36/43, 84%), online-based testing (33/43, 77%), and nurse-led testing (31/43, 72%). The CEs favored convenient interventions that also maintain a relationship with their provider. Of the provider experts (PEs), 77% (37/48) completed all rounds; 59% (22/37) were physicians. Consensus was reached on the same 6 interventions (range 25/37, 68%, to 39/39, 100%) but not for provider alerts (7/37, 19%) and provider audit and feedback (6/37, 16%). Express testing, online-based testing, and nurse-led testing were prioritized by >95% (>37/39) of the PEs by the end of round 2 because of streamlined processes and decreased need to see a provider. Conclusions: Both panels were enthusiastic about innovations that make STI testing more efficient, with express testing rating highly in both the prioritizations and top 3 rankings. However, CEs preferred convenient interventions that involved their provider, whereas PEs favored interventions that prioritized patient independence and reduced patient-provider time. International Registered Report Identifier (IRRID): RR2-10.2196/13801 %M 37384393 %R 10.2196/40477 %U https://www.jmir.org/2023/1/e40477 %U https://doi.org/10.2196/40477 %U http://www.ncbi.nlm.nih.gov/pubmed/37384393 %0 Journal Article %@ 2564-1891 %I JMIR Publications %V 3 %N %P e40802 %T Content Quality of YouTube Videos About Pain Management After Cesarean Birth: Content Analysis %A Squires,Natalie A %A Soyemi,Elizabeth %A Yee,Lynn M %A Birch,Eleanor M %A Badreldin,Nevert %+ Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Suite 05-2149, 250 E. Superior Street, Chicago, IL, 60611, United States, 1 312 472 4685, nevert.badreldin@northwestern.edu %K health information %K internet %K YouTube %K cesarean section %K cesarean %K C-section %K postpartum %K social media %K web-based video %K maternal %K postnatal %K pain %K systematic search %K patient education %K information quality %K accuracy %K credibility %K health education %K educational video %K education resource %K health video %D 2023 %7 23.6.2023 %9 Original Paper %J JMIR Infodemiology %G English %X Background: YouTube is an increasingly common source of health information; however, the reliability and quality of the information are inadequately understood. Several studies have evaluated YouTube as a resource during pregnancy and found the available information to be of poor quality. Given the increasing attention to postpartum health and the importance of promoting safe opioid use after birth, YouTube may be a source of information for birthing individuals. However, little is known about the available information on YouTube regarding postpartum pain. Objective: The purpose of this study is to systematically evaluate the quality of YouTube videos as an educational resource for postpartum cesarean pain management. Methods: A systematic search of YouTube videos was conducted on June 25, 2021, using 36 postpartum cesarean pain management–related keywords, which were identified by clinical experts. The search replicated a default YouTube search via a public account. The first 60 results from each keyword search were reviewed, and unique videos were analyzed. An overall content score was developed based on prior literature and expert opinion to evaluate the video’s relevance and comprehensiveness. The DISCERN instrument, a validated metric to assess consumer health information, was used to evaluate the reliability of video information. Videos with an overall content score of ≥5 and a DISCERN score of ≥39 were classified as high-quality health education resources. Descriptive analysis and intergroup comparisons by video source and quality were conducted. Results: Of 73 unique videos, video sources included medical videos (n=36, 49%), followed by personal video blogs (vlogs; n=32, 44%), advertisements (n=3, 4%), and media (n=2, 3%). The average overall content score was 3.6 (SD 2.0) out of 9, and the average DISCERN score was 39.2 (SD 8.1) out of 75, indicating low comprehensiveness and fair information reliability, respectively. High-quality videos (n=22, 30%) most frequently addressed overall content regarding pain duration (22/22, 100%), pain types (20/22, 91%), return-to-activity instructions (19/22, 86%), and nonpharmacologic methods for pain control (19/22, 86%). There were differences in the overall content score (P=.02) by video source but not DISCERN score (P=.45). Personal vlogs had the highest overall content score at 4.0 (SD 2.1), followed by medical videos at 3.3 (SD 2.0). Longer video duration and a greater number of comments and likes were significantly correlated with the overall content score, whereas the number of video comments was inversely correlated with the DISCERN score. Conclusions: Individuals seeking information from YouTube regarding postpartum cesarean pain management are likely to encounter videos that lack adequate comprehensiveness and reliability. Clinicians should counsel patients to exercise caution when using YouTube as a health information resource. %M 37351938 %R 10.2196/40802 %U https://infodemiology.jmir.org/2023/1/e40802 %U https://doi.org/10.2196/40802 %U http://www.ncbi.nlm.nih.gov/pubmed/37351938 %0 Journal Article %@ 2369-2529 %I JMIR Publications %V 10 %N %P e46575 %T Outcomes of Implementing a Webinar-Based Strategy to Improve Spinal Cord Injury Knowledge and Community Building: Convergent Mixed Methods Study %A Brehon,Katelyn %A MacIsaac,Rob %A Bhatia,Zahra %A Buck,Taryn %A Charbonneau,Rebecca %A Crochetiere,Steven %A Donia,Scott %A Daoust,Jason %A Ho,Chester %A Kainth,Hardeep %A Loewen,Janee %A Lorch,Brandice %A Mastrodimos,Kiesha %A Neunzig,Brittney %A Papathanassoglou,Elizabeth %A Parmar,Rajvir %A Pohar Manhas,Kiran %A Tenove,Terry %A Velji,Elysha %A Loyola-Sanchez,Adalberto %+ Department of Physical Therapy, University of Alberta, 116 St & 85 Ave, Edmonton, AB, T6G2R3, Canada, 1 4037000599, brehon@ualberta.ca %K spinal cord injury %K telehealth %K webinars %K mixed methods %K implementation %D 2023 %7 23.6.2023 %9 Original Paper %J JMIR Rehabil Assist Technol %G English %X 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. %M 37351945 %R 10.2196/46575 %U https://rehab.jmir.org/2023/1/e46575 %U https://doi.org/10.2196/46575 %U http://www.ncbi.nlm.nih.gov/pubmed/37351945 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e47524 %T The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study %A Tsimicalis,Argerie %A Stinson,Jennifer %A Thorstad,Kelly %A Rauch,Frank %A Hamdy,Reggie %A Chougui,Khadidja %A Addab,Sofia %A Palomo,Telma %A Bernstein,Mitchell %A Dahan-Oliel,Noemi %A Veilleux,Louis-Nicolas %A Massochin Nunes Pinto,Laura %A Passos dos Santos,Raissa %+ Shriners Hospitals for Children-Canada, 1003 Decarie Blvd, Montreal, QC, H4A 0A9, Canada, 1 514 842 4464, argerie.tsimicalis@mcgill.ca %K eHealth program %K osteogenesis imperfecta %K self-management %K youth %K transition of care %D 2023 %7 23.6.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: Innovative approaches are needed to address the self-management needs of youths with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative eHealth program called “Teens Taking Charge: Managing OI Online,” hereafter named “Teens OI.” This program seeks to optimize self-management, facilitate a successful transition to adult care, and address a critical gap in the quality of care for youths with OI. Objective: The study objectives are to (1) design and develop an English and French version of the Teens OI and (2) test the usability of the Teens OI in terms of efficiency, effectiveness, and satisfaction from the perspectives of youths with OI and their parents. Methods: A user-centered design is presently in progress to design and develop Teens OI. A “Website Design and Development Council” (ie, Council) has been convened, with 20 youths and parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of the Teens OI will ensue in 4 iterative cycles with 32 youth-parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. Results: As of December 2022, an 8-person, interdisciplinary Teens OI council, comprising 4 health care professionals, 3 youths and young adults with OI, and 1 parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with 10 youths with OI with or without their parents (n=6) from December 2021 to September 2022. Data analysis has been in progress since April 2022. Aim 2 is ethically approved and will commence following the completion of content development, expected by late July 2023. Preliminary analysis indicates that the following topics need to be prioritized for the youths: mental health, pain, accessibility, medical care, education, community, and parental care. Conclusions: The proposed study will design and develop a self-management and transitional care program for youths with OI in partnership with patients, caregivers, and health care professionals. This study leverages youths’ openness to adopt eHealth technologies to meet their needs and has the potential to actively engage them to autonomously manage their lifelong conditions, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioning from pediatric to adult care is at risk of various adverse events associated with the transition. International Registered Report Identifier (IRRID): DERR1-10.2196/47524 %M 37351933 %R 10.2196/47524 %U https://www.researchprotocols.org/2023/1/e47524 %U https://doi.org/10.2196/47524 %U http://www.ncbi.nlm.nih.gov/pubmed/37351933 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 6 %N %P e44252 %T Comprehension by Caregivers and Adolescents of Clinical Trial Information Delivered via Multimedia Video Versus Conventional Practice: Nonrandomized Controlled Trial %A Blake,Kathryn V %A Antal,Holly %A Bunnell,H Timothy %A He,Jiaxian %A Henderson,Robert %A Holbrook,Janet T %A McCahan,Suzanne M %A Pennington,Chris %A Rogers,Linda %A Shade,David %A Sugar,Elizabeth A %A Taylor,Alexandra %A Wise,Robert A %A Wysocki,Tim %+ Center for Pharmacogenomics and Translational Research, Nemours Children's Health, 807 Children's Way, Jacksonville, FL, 32207, United States, 1 9046865047, kathryn.blake@nemours.org %K adolescent %K clinical trial %K comprehension %K informed consent %K internet %K multimedia %D 2023 %7 22.6.2023 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Research participants often misunderstand the required elements of informed consent information, whether provided in written or oral format. Informed consent instruments with embedded evidence-based learning theory principles administered in multimedia electronic formats may improve comprehension and retention. Objective: This study aims to determine whether study information comprehension and retention using an interactive multimedia video consent process was noninferior to comprehension and retention after an in-person face-to-face interaction with a conventional written consent document for caregivers and adolescents enrolled in a clinical trial. Methods: Participants were caregivers and children aged 12 to 17 years who were enrolled in a clinical trial of asthma treatment. Consent information was presented as a multimedia web-based video consent interaction or as a conventional written consent document with in-person interaction between the prospective participants and the study staff. The trial used a parallel nonrandomized noninferiority design that compared the 2 consent methods. Caregivers and adolescents completed a 17-item open-ended comprehension questionnaire (score range 17-51) at enrollment and at the end of the study 20 weeks later. Comprehension and retention were compared between the consent formats. Noninferiority was established if the 95% CI upper bound of the difference in scores (conventional format minus web-based) was less than the noninferiority margin of 2.4; superiority was established if the upper bound of the CI was <0. Results: In total, 54 caregiver and adolescent dyads completed the interactive multimedia web-based video consent, and 25 dyads completed the conventional consent. Overall, 33% (26/79) of all adolescents were Black, 57% (45/79) were male, and 61% (48/79) had a household income of US $20,177) were associated with campaigners who emphasized a disability from their disease, those who were reluctant to ask for help, or those who died due to their disease. Conclusions: Demographic and thematic factors are associated with transplant patients’ skin cancer–related fundraising success, favoring those who are younger, in more extreme situations, and appear reluctant to ask for help; these findings are consistent with those of previous studies. Additionally, transplant patients have complex and expensive dermatologic needs that may not be fully covered by insurance, as reflected in their GoFundMe campaigns. The most commonly mentioned reasons for fundraising included living expenses or loss of income, inadequate or no insurance, and end-of-life costs. Our findings may inform transplant patients how to maximize the success of their campaigns and highlight gaps in health care coverage for skin cancer–related costs. Limitations include the possibility for misclassification due to the data abstraction process and limiting data collection to fundraisers available on GoFundMe while excluding those on other websites. Further research should investigate the ethical implications of crowdfunding, financial needs of this patient population, and potential ways to improve access to routine skin cancer surveillance among patients receiving transplants. %M 37632922 %R 10.2196/43845 %U https://derma.jmir.org/2023/1/e43845 %U https://doi.org/10.2196/43845 %U http://www.ncbi.nlm.nih.gov/pubmed/37632922 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e37553 %T Gender Effects on the Impact of Colorectal Cancer Risk Calculators on Screening Intentions: Experimental Study %A Lee,Jungmin %A Keil,Mark %A Lee,Jong Seok %A Baird,Aaron %A Choi,Hyoung-Yong %+ J Mack Robinson College of Business, Georgia State University, 55 Park Place NE, suite 1704, Atlanta, GA, 30303, United States, 1 404 413 7360, jlee469@gsu.edu %K colorectal %K cancer %K oncology %K risk calculator %K risk %K perceived susceptibility %K susceptibility %K gender %K intention %K randomized %K randomization %K screening %K perception %K prevention %D 2023 %7 12.6.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: According to a 2020 study by the American Cancer Society, colorectal cancer (CRC) represents the third leading cause of cancer both in incidence and death in the United States. Nonetheless, CRC screening remains lower than that for other high-risk cancers such as breast and cervical cancer. Risk calculators are increasingly being used to promote cancer awareness and improve compliance with CRC screening tests. However, research concerning the effects of CRC risk calculators on the intention to undergo CRC screening has been limited. Moreover, some studies have found the impacts of CRC risk calculators to be inconsistent, reporting that receiving personalized assessments from such calculators lowers people’s risk perception. Objective: The objective of this study is to examine the effect of using CRC risk calculators on individuals’ intentions to undergo CRC screening. In addition, this study aims to examine the mechanisms through which using CRC risk calculators might influence individuals’ intentions to undergo CRC screening. Specifically, this study focuses on the role of perceived susceptibility to CRC as a potential mechanism mediating the effect of using CRC risk calculators. Finally, this study examines how the effect of using CRC risk calculators on individuals’ intentions to undergo CRC screening may vary by gender. Methods: We recruited a total of 128 participants through Amazon Mechanical Turk who live in the United States, have health insurance, and are in the age group of 45 to 85 years. All participants answered questions needed as input for the CRC risk calculator but were randomly assigned to treatment (CRC risk calculator results immediately received) and control (CRC risk calculator results made available after the experiment ended) groups. The participants in both groups answered a series of questions regarding demographics, perceived susceptibility to CRC, and their intention to get screened. Results: We found that using CRC risk calculators (ie, answering questions needed as input and receiving calculator results) has a positive effect on intentions to undergo CRC screening, but only for men. For women, using CRC risk calculators has a negative effect on their perceived susceptibility to CRC, which in turn reduces the intention to sign up for CRC screening. Additional simple slope and subgroup analyses confirm that the effect of perceived susceptibility on CRC screening intention is moderated by gender. Conclusions: This study shows that using CRC risk calculators can increase individuals’ intentions to undergo CRC screening, but only for men. For women, using CRC risk calculators can reduce their intentions to undergo CRC screening, as it reduces their perceived susceptibility to CRC. Given these mixed results, although CRC risk calculators can be a useful source of information on one’s CRC risk, patients should be discouraged from relying solely on them to inform decisions regarding CRC screening. %M 37307035 %R 10.2196/37553 %U https://formative.jmir.org/2023/1/e37553 %U https://doi.org/10.2196/37553 %U http://www.ncbi.nlm.nih.gov/pubmed/37307035 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e44326 %T Consensus on the Terms and Procedures for Planning and Reporting a Usability Evaluation of Health-Related Digital Solutions: Delphi Study and a Resulting Checklist %A Martins,Ana Isabel %A Santinha,Gonçalo %A Almeida,Ana Margarida %A Ribeiro,Óscar %A Silva,Telmo %A Rocha,Nelson %A Silva,Anabela G %+ Center for Health Technology and Services Research, School of Health Sciences, University of Aveiro, Campus Universitário de Santiago, Aveiro, 3810-193, Portugal, 351 234370200, asilva@ua.pt %K usability evaluation %K Delphi study %K user-centered design %K design %K usability %K evaluation %K process %K development %K user %K digital %K efficient %K reporting %K quality %K applicability %D 2023 %7 6.6.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Usability evaluation both by experts and target users is an integral part of the process of developing and assessing digital solutions. Usability evaluation improves the probability of having digital solutions that are easier, safer, more efficient, and more pleasant to use. However, despite the widespread recognition of the importance of usability evaluation, there is a lack of research and consensus on related concepts and reporting standards. Objective: The aim of the study is to generate consensus on terms and procedures that should be considered when planning and reporting a study on a usability evaluation of health-related digital solutions both by users and experts and provide a checklist that can easily be used by researchers when conducting their usability studies. Methods: A Delphi study with 2 rounds was conducted with a panel of international participants experienced in usability evaluation. In the first round, they were asked to comment on definitions, rate the importance of preidentified methodological procedures using a 9-item Likert scale, and suggest additional procedures. In the second round, experienced participants were asked to reappraise the relevance of each procedure informed by round 1 results. Consensus on the relevance of each item was defined a priori when at least 70% or more experienced participants scored an item 7 to 9 and less than 15% of participants scored the same item 1 to 3. Results: A total of 30 participants (n=20 females) from 11 different countries entered the Delphi study with a mean age of 37.2 (SD 7.7) years. Agreement was achieved on the definitions for all usability evaluation–related terms proposed (usability assessment moderator, participant, usability evaluation method, usability evaluation technique, tasks, usability evaluation environment, usability evaluator, and domain evaluator). A total of 38 procedures related to usability evaluation planning and reporting were identified across rounds (28 were related to usability evaluation involving users and 10 related to usability evaluation involving experts). Consensus on the relevance was achieved for 23 (82%) of the procedures related to usability evaluation involving users and for 7 (70%) of the usability evaluation procedures involving experts. A checklist was proposed that can guide authors when designing and reporting usability studies. Conclusions: This study proposes a set of terms and respective definitions as well as a checklist to guide the planning and reporting of usability evaluation studies, constituting an important step toward a more standardized approach in the field of usability evaluation that may contribute to enhancing the quality of planning and reporting usability studies. Future studies can contribute to further validating this study work by refining the definitions, assessing the practical applicability of the checklist, or assessing whether using this checklist results in higher-quality digital solutions. %M 37279047 %R 10.2196/44326 %U https://www.jmir.org/2023/1/e44326 %U https://doi.org/10.2196/44326 %U http://www.ncbi.nlm.nih.gov/pubmed/37279047 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e43928 %T Similar Outcomes of Web-Based and Face-to-Face Training of the GRADE Approach for the Certainty of Evidence: Randomized Controlled Trial %A Tokalić,Ružica %A Poklepović Peričić,Tina %A Marušić,Ana %+ Department of Research in Biomedicine and Health, Center for Evidence-based Medicine, University of Split School of Medicine, Šoltanska 2, Split, 21000, Croatia, 385 21 557 812, ana.marusic@mefst.hr %K Grading of Recommendations Assessment, Development and Evaluation %K GRADE %K education %K online %K face-to-face %K evidence-based medicine %K guideline %K randomized controlled trial %K RCT %K randomized %K evidence %K assessment %K teaching %K medical education %K research method %K online education %K library science %K information science %K medical librarian %D 2023 %7 6.6.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: The GRADE (Grading of Recommendations Assessment, Development and Evaluation) approach is a system for transparent evaluation of the certainty of evidence used in clinical practice guidelines and systematic reviews. GRADE is a key part of evidence-based medicine (EBM) training of health care professionals. Objective: This study aimed to compare web-based and face-to-face methods of teaching the GRADE approach for evidence assessment. Methods: A randomized controlled trial was conducted on 2 delivery modes of GRADE education integrated into a course on research methodology and EBM with third-year medical students. Education was based on the Cochrane Interactive Learning “Interpreting the findings” module, which had a duration of 90 minutes. The web-based group received the web-based asynchronous training, whereas the face-to-face group had an in-person seminar with a lecturer. The main outcome measure was the score on a 5-question test that assessed confidence interval interpretation and overall certainty of evidence, among others. Secondary outcomes included writing a recommendation for practice and course satisfaction. Results: In all, 50 participants received the web-based intervention, and 47 participants received the face-to-face intervention. The groups did not differ in the overall scores for the Cochrane Interactive Learning test, with a median of 2 (95% CI 1.0-2.0) correct answers for the web-based group and 2 (95% CI 1.3-3.0) correct answers for the face-to-face group. Both groups gave the most correct answers to the question about rating a body of evidence (35/50, 70% and 24/47, 51% for the web-based and face-to-face group, respectively). The face-to-face group better answered the question about the overall certainty of evidence question. The understanding of the Summary of Findings table did not differ significantly between the groups, with a median of 3 correct answers to 4 questions for both groups (P=.352). The writing style for the recommendations for practice also did not differ between the 2 groups. Students’ recommendations mostly reflected the strengths of the recommendations and focused on the target population, but they used passive words and rarely mentioned the setting for the recommendation. The language of the recommendations was mostly patient centered. Course satisfaction was high in both groups. Conclusions: Training in the GRADE approach could be equally effective when delivered asynchronously on the web or face-to-face. Trial Registration: Open Science Framework akpq7; https://osf.io/akpq7/ %M 37279050 %R 10.2196/43928 %U https://www.jmir.org/2023/1/e43928 %U https://doi.org/10.2196/43928 %U http://www.ncbi.nlm.nih.gov/pubmed/37279050 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e40193 %T Effectiveness of an Intervention Providing Digitally Generated Personalized Feedback and Education on Adherence to Continuous Positive Airway Pressure: Randomized Controlled Trial %A Lacroix,Joyca %A Tatousek,Jan %A Den Teuling,Niek %A Visser,Thomas %A Wells,Charles %A Wylie,Paul %A Rosenberg,Russell %A Bogan,Richard %+ Department of Digital Engagement, Cognition & Behavior, Philips Research, Eindhoven, Netherlands, High Tech Campus 34, Eindhoven, 5656 AE, Netherlands, 31 628041122, joyca.lacroix@philips.com %K therapy adherence %K personalized feedback %K personalized education %K tailored communication %K psychological profile %K continuous positive airway pressure therapy %K CPAP therapy %K obstructive sleep apnea %D 2023 %7 22.5.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Many people worldwide experience obstructive sleep apnea, which is associated with medical and psychological problems. Continuous positive airway pressure (CPAP) is an efficacious therapy for obstructive sleep apnea, but its effect is limited by nonadherence. Studies show that personalized education and feedback can increase CPAP adherence. Moreover, tailoring the style of information to the psychological profile of a patient has been shown to enhance the impact of interventions. Objective: This study aimed to assess the effect of an intervention providing digitally generated personalized education and feedback on CPAP adherence and the additional effect of tailoring the style of the education and feedback to an individual’s psychological profile. Methods: This study was a 90-day, multicenter, parallel, single-blinded, and randomized controlled trial with 3 conditions: personalized content in a tailored style (PT) in addition to usual care (UC), personalized content in a nontailored style (PN) in addition to UC, and UC. To test the effect of personalized education and feedback, the PN + PT group was compared with the UC group. To test the additional effect of tailoring the style to psychological profiles, the PN and PT groups were compared. Overall, 169 participants were recruited from 6 US sleep clinics. The primary outcome measures were adherence based on minutes of use per night and on nights of use per week. Results: We found a significant positive effect of personalized education and feedback on both primary adherence outcome measures. The difference in the estimated average adherence based on minutes of use per night between the PT + PN and UC groups on day 90 was 81.3 minutes in favor of the PT + PN group (95% CI −134.00 to −29.10; P=.002). The difference in the average adherence based on nights of use per week between the PT + PN and UC groups at week 12 was 0.9 nights per week in favor of the PT + PN group (difference in odds ratio 0.39, 95% CI 0.21-0.72; P=.003). We did not find an additional effect of tailoring the style of the intervention to psychological profiles on the primary outcomes. The difference in nightly use between the PT and PN groups on day 90 (95% CI −28.20 to 96.50; P=.28) and the difference in nights of use per week between the PT and PN groups at week 12 (difference in odds ratio 0.85, 95% CI 0.51-1.43; P=.054) were both nonsignificant. Conclusions: The results show that personalized education and feedback can increase CPAP adherence substantially. Tailoring the style of the intervention to the psychological profiles of patients did not further increase adherence. Future research should investigate how the impact of interventions can be enhanced by catering to differences in psychological profiles. Trial Registration: ClinicalTrials.gov NCT02195531; https://clinicaltrials.gov/ct2/show/NCT02195531 %M 37213195 %R 10.2196/40193 %U https://www.jmir.org/2023/1/e40193 %U https://doi.org/10.2196/40193 %U http://www.ncbi.nlm.nih.gov/pubmed/37213195 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 6 %N %P e40561 %T Improving Knowledge About Pregnancy for Deaf South African Women of Reproductive Age Through a Text Messaging–Based Information Campaign: Mixed Methods Study %A Haricharan,Hanne Jensen %A Hacking,Damian %A Lau,Yan Kwan %A Heap,Marion %+ School of Public Health, University of Cape Town, Anzio Road, Observatory, Cape Town, 7925, South Africa, 27 829656103, hanne.haricharan@uct.ac.za %K SMS text messages %K cell phones %K mobile health %K mHealth %K health information %K health literacy %K healthy behavior %K maternal health %K antenatal care %K Deaf %K South Africa %D 2023 %7 22.5.2023 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Signing Deaf South Africans have limited access to health information and, consequently, limited knowledge about health. Maternal and neonatal mortality rates are high. Cell phone use is high, making it a potentially effective way of communicating about maternal and child health. Objective: The primary aim of this study was to assess whether an SMS text messaging–based health information campaign could improve knowledge about pregnancy, antenatal care, and healthy living during pregnancy for signing Deaf South African women of reproductive age. The secondary aim was to evaluate the acceptability of such an intervention. Methods: This study was designed as a pretest-posttest study. A baseline questionnaire assessed participants’ knowledge about pregnancy, antenatal care, and healthy living during pregnancy before an SMS text messaging–based information campaign was conducted. After the campaign, an exit questionnaire was administered containing the same questions as the baseline questionnaire with additional questions on general acceptability and communication preferences. The results were compared between baseline and exit using the McNemar and Wilcoxon signed rank tests. A focus group aimed to obtain further information on the impact and acceptability of SMS text messages. The focus group was analyzed inductively. Results: The study showed a statistically significant improvement in overall health knowledge among participants. Despite this, some participants found the medical terminology challenging to understand. Several ways of improving SMS text messaging campaigns for the Deaf were identified, including using Multimedia Messaging Services with a person signing messages and linking information campaigns to a communication service that would enable Deaf people to pose questions. The focus group also suggested that SMS text messages might play a role in motivating healthy behaviors during pregnancy. Conclusions: The SMS text messaging campaign effectively improved Deaf women’s knowledge about pregnancy, antenatal care, and healthy living during pregnancy and has the potential to affect health behavior. This contrasts with a similar study on hearing pregnant women. This suggests that SMS text messages may be particularly effective in improving Deaf people’s health knowledge. However, attention should be paid to Deaf participants’ specific needs and communication preferences to optimize impact. The potential of using SMS text messaging campaigns to affect behavior should be studied. Trial Registration: Pan-African Clinical Trials Registry (PACTR) PACTR201512001352180; https://tinyurl.com/3rxvsrbe %M 37213174 %R 10.2196/40561 %U https://pediatrics.jmir.org/2023/1/e40561 %U https://doi.org/10.2196/40561 %U http://www.ncbi.nlm.nih.gov/pubmed/37213174 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e45417 %T The Influence of Mass Media on the COVID-19 Vaccination Decision-making Process: Prospective Survey-Based Study %A Quon,Cameron M %A Walker,Macey %A Graves,Lisa %+ Department of Family and Community Medicine, Western Michigan University Homer Stryker MD School of Medicine, 300 Portage Street, Kalamazoo, MI, 49007, United States, 1 269 337 4400, camquon@gmail.com %K accuracy %K attitudes %K behavior %K communication %K COVID-19 %K decision-making %K dissemination %K efficacy %K employment %K mass media %K reliability %K safety %K survey study %K usage %K vaccination %K vaccine hesitancy %D 2023 %7 17.5.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Vaccine hesitancy during the COVID-19 pandemic was exacerbated by an infodemic of conflating accurate and inaccurate information with divergent political messages, leading to varying adherence to health-related behaviors. In addition to the media, people received information about COVID-19 and the vaccine from their physicians and closest networks of family and friends. Objective: This study explored individuals’ decision-making processes in receiving the COVID-19 vaccine, focusing on the influence of specific media outlets, political orientation, personal networks, and the physician-patient relationship. We also evaluated the effect of other demographic data like age and employment status. Methods: An internet survey was disseminated through the Western Michigan University Homer Stryker MD School of Medicine Facebook account. The survey included questions on media sources for COVID-19 information, political affiliation, presidential candidate choice, and multiple Likert-type agreement scale questions on conceptions of the vaccine. Each respondent was assigned a media source score, which represented the political leaning of their media consumption. This was calculated using a model based on data from the Pew Research Center that assigned an ideological profile to various news outlets. Results: The sample consisted of 1757 respondents, with 89.58% (1574/1757) of them choosing to take the COVID-19 vaccine. Those employed part-time and the unemployed were at 1.94 (95% CI 1.15-3.27) and 2.48 (95% CI 1.43-4.39) greater odds of choosing the vaccine than those employed full-time. For every 1-year increase in age, there was a 1.04 (95% CI 1.02-1.06) multiplicative increase in odds of choosing to receive the vaccine. For every 1-point increase in media source score toward more Liberal or Democrat, there was a 1.06 (95% CI 1.04-1.07) multiplicative increase in odds of choosing to take the COVID-19 vaccine. The Likert-type agreement scale showed statistically significant differences (P<.001) between respondents; those who chose the vaccine agreed more strongly on their belief in the safety and efficacy of vaccines, the influence of their personal beliefs, and the encouragement and positive experiences of family and friends. Most respondents rated their personal relationship with their physician to be good, but this factor did not correlate with differences in vaccine decision. Conclusions: Although multiple factors are involved, the role of mass media in shaping attitudes toward vaccines cannot be ignored, especially its ability to spread misinformation and foster division. Surprisingly, the effect of one’s personal physician may not weigh as heavily in one’s decision-making process, potentially indicating the need for physicians to alter their communication style, including involvement in social media. In the era of information overload, effective communication is critical in ensuring the dissemination of accurate and reliable information to optimize the vaccination decision-making process. %M 37195740 %R 10.2196/45417 %U https://www.jmir.org/2023/1/e45417 %U https://doi.org/10.2196/45417 %U http://www.ncbi.nlm.nih.gov/pubmed/37195740 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e43518 %T Factors Influencing Admission Decisions in Skilled Nursing Facilities: Retrospective Quantitative Study %A Strickland,Caroline %A Chi,Nancy %A Ditz,Laura %A Gomez,Luisa %A Wagner,Brittin %A Wang,Stanley %A Lizotte,Daniel J %+ Department of Computer Science, University of Western Ontario, 1151 Richmond St, London, ON, N6A 3K7, Canada, 1 519 661 2111, cstrick4@uwo.ca %K decision-making %K skilled nursing facility %K patient admission %K decision %K nursing %K clinical %K database %K health informatics %K diagnosis %K modeling %K connection %K patient %D 2023 %7 17.5.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Occupancy rates within skilled nursing facilities (SNFs) in the United States have reached a record low. Understanding drivers of occupancy, including admission decisions, is critical for assessing the recovery of the long-term care sector as a whole. We provide the first comprehensive analysis of financial, clinical, and operational factors that impact whether a patient referral to an SNF is accepted or denied, using a large health informatics database. Objective: Our key objectives were to describe the distribution of referrals sent to SNFs in terms of key referral- and facility-level features; analyze key financial, clinical, and operational variables and their relationship to admission decisions; and identify the key potential reasons behind referral decisions in the context of learning health systems. Methods: We extracted and cleaned referral data from 627 SNFs from January 2020 to March 2022, including information on SNF daily operations (occupancy and nursing hours), referral-level factors (insurance type and primary diagnosis), and facility-level factors (overall 5-star rating and urban versus rural status). We computed descriptive statistics and applied regression modeling to identify and describe the relationships between these factors and referral decisions, considering them individually and controlling for other factors to understand their impact on the decision-making process. Results: When analyzing daily operation values, no significant relationship between SNF occupancy or nursing hours and referral acceptance was observed (P>.05). By analyzing referral-level factors, we found that the primary diagnosis category and insurance type of the patient were significantly related to referral acceptance (P<.05). Referrals with primary diagnoses within the category “Diseases of the Musculoskeletal System” are least often denied whereas those with diagnoses within the “Mental Illness” category are most often denied (compared with other diagnosis categories). Furthermore, private insurance holders are least often denied whereas “medicaid” holders are most often denied (compared with other insurance types). When analyzing facility-level factors, we found that the overall 5-star rating and urban versus rural status of an SNF are significantly related to referral acceptance (P<.05). We found a positive but nonmonotonic relationship between the 5-star rating and referral acceptance rates, with the highest acceptance rates found among 5-star facilities. In addition, we found that SNFs in urban areas have lower acceptance rates than their rural counterparts. Conclusions: While many factors may influence a referral acceptance, care challenges associated with individual diagnoses and financial challenges associated with different remuneration types were found to be the strongest drivers. Understanding these drivers is essential in being more intentional in the process of accepting or denying referrals. We have interpreted our results using an adaptive leadership framework and suggested how SNFs can be more purposeful with their decisions while striving to achieve appropriate occupancy levels in ways that meet their goals and patients’ needs. %M 37195755 %R 10.2196/43518 %U https://www.jmir.org/2023/1/e43518 %U https://doi.org/10.2196/43518 %U http://www.ncbi.nlm.nih.gov/pubmed/37195755 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e43180 %T Association Between the Use of a Digital Health Platform During Pregnancy and Helping Users Avoid Emergency and In-Person Care: Retrospective Observational Study %A Jahnke,Hannah R %A Rubin-Miller,Lily %A Henrich,Natalie %A Moss,Christa %A Shah,Neel %A Peahl,Alex %+ Maven Clinic, 160 Varick Street, New York, NY, 10013, United States, 1 5083979329, hannah.jahnke@mavenclinic.com %K pregnancy %K telehealth %K web-based care %K emergency room %K value-based care %K digital care %K prenatal care %D 2023 %7 15.5.2023 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 37184930 %R 10.2196/43180 %U https://www.jmir.org/2023/1/e43180 %U https://doi.org/10.2196/43180 %U http://www.ncbi.nlm.nih.gov/pubmed/37184930 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 12 %N %P e41353 %T Bringing the Pediatric Endocrine Spanish Speaking Community Together: First Virtual Pediatric Endocrine Meeting in Low- and Middle-Income Countries in Central and South America %A Bogarin,Roberto %A Elizondo,Luis %A Kalaitzoglou,Evangelia %A Popovic,Jadranka %A Rogol,Alan %A Richmond,Erick %A Chanoine,Jean-Pierre %A Lopez-Pedrosa,Jose M %A Ruiz Salazar,Francis %A Vuguin,Patricia %+ Columbia University, 3959 Broadway, New York, NY, 10032, United States, 1 212 305 8999, pv2267@cumc.columbia.edu %K continuing medical education %K continuing education %K medical education %K professional development %K pediatric %K child %K endocrinology %K endocrine %K pediatric endocrinology %K diabetes %K low- and middle-income countries %K Latin America %K Spanish %K virtual %K resources %K digital %D 2023 %7 8.5.2023 %9 Viewpoint %J Interact J Med Res %G English %X Background: Pediatric endocrinology is a specialty that is struggling worldwide to maintain adequately trained professionals. Pediatric endocrine care in Central America and Caribbean countries is often performed by pediatricians or adult endocrinologists due to the limited number of pediatric endocrinologists. These health care providers are seldom members of endocrine societies and frequently lack formal training in the field. Objective: In this study, we describe the scope of a virtual conference in pediatric endocrinology and diabetes targeted to low- and middle-income countries to provide equal opportunities for access to medical education for health care professionals. Methods: The virtual conference was sponsored by the Pediatric Endocrine Society (North America), Asociación Costarricense de Endocrinología (previously, Asociación Nacional Pro Estudio de la Diabetes, Endocrinología y Metabolismo), and Asociacion Centroamericana y del Caribe de Endocrinologia Pediátrica. The conference was free to participants and comprised 23 sessions that were either synchronous with ability for real-time interactive sessions or asynchronous sessions, where content was available online to access at their convenience. Topics included idiopathic short stature, polycystic ovarian syndrome, diabetes mellitus, telemedicine, Turner syndrome, congenital adrenal hyperplasia, obesity, central precocious puberty, and subclinical hypothyroidism. The participants were asked to evaluate the conference after its completion with a questionnaire. Results: A total of 8 speakers from Spain, Canada, Costa Rica, and the United States delivered the virtual event to 668 health care professionals from Guatemala, Venezuela, Dominican Republic, Costa Rica, Ecuador, Peru, Uruguay, Mexico, Honduras, Argentina, the United States, Bolivia, Chile, Panama, El Salvador, Nicaragua, Paraguay, Belize, Spain, and Colombia. Name, profession, and country were fully disclosed by 410 (61.4%) of the 668 health care professionals. The profession or level of training of participants were as follows: pediatric endocrinologists (n=129, 19.3%), pediatricians (n=116, 17.4%), general practitioners (n=77, 11.5%), adult endocrinologists (n=34, 5.1%), medical students (n=23, 3.4%), residents in various specialties (n=14, 2.1%), and others (n=17, 2.6%). A total of 23 sessions were offered, most of which were bilingual (Spanish and English). Feedback from the evaluation questionnaire indicated that the content of the conference was very relevant to the participants’ professional practice. Additionally, the participants reported that they were very satisfied with the organization, the web-based platform, and the sessions of the conference. Conclusions: Lack of accessibility to the latest and cutting-edge medical education in pediatric endocrinology and diabetes for medical professionals from low- and middle-income countries can be overcome with a virtual conference. Online availability, low cost, and easy-to-use technology were well received from the participants, who were overall very satisfied by the quality and the relevance of the sessions to their professional practice. %M 37155229 %R 10.2196/41353 %U https://www.i-jmr.org/2023/1/e41353 %U https://doi.org/10.2196/41353 %U http://www.ncbi.nlm.nih.gov/pubmed/37155229 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e40917 %T Exploring the Acceptability of Text Messages to Inform and Support Shared Decision-making for Colorectal Cancer Screening: Online Panel Survey %A Hwang,Soohyun %A Lazard,Allison J %A Reffner Collins,Meredith K %A Brenner,Alison T %A Heiling,Hillary M %A Deal,Allison M %A Crockett,Seth D %A Reuland,Daniel S %A Elston Lafata,Jennifer %+ Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina Chapel Hill, 135 Dauer Dr, Chapel Hill, NC, 27599, United States, 1 7347076635, soohwang@live.unc.edu %K text messages %K shared decision-making %K colorectal cancer %K cancer screening %K mHealth %K cancer %K health care %K marginalized groups %D 2023 %7 5.5.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: While online portals may be helpful to engage patients in shared decision-making at the time of cancer screening, because of known disparities in patient portal use, sole reliance on portals to support cancer screening decision-making could exacerbate well-known disparities in this health care area. Innovative approaches are needed to engage patients in health care decision-making and to support equitable shared decision-making. Objective: We assessed the acceptability of text messages to engage sociodemographically diverse individuals in colorectal cancer (CRC) screening decisions and support shared decision-making in practice. Methods: We developed a brief text message program offering educational information consisting of components of shared decision-making regarding CRC screening (eg, for whom screening is recommended, screening test options, and pros/cons of options). The program and postprogram survey were offered to members of an online panel. The outcome of interest was program acceptability measured by observed program engagement, participant-reported acceptability, and willingness to use similar programs (behavioral intent). We evaluated acceptability among historically marginalized categories of people defined by income, literacy, and race. Results: Of the 289 participants, 115 reported having a low income, 146 were Black/African American, and 102 had less than extreme confidence in their health literacy. With one exception, we found equal or greater acceptability, regardless of measure, within each of the marginalized categories of people compared to their counterparts. The exception was that participants reporting an income below US $50,000 were less likely to engage with sufficient content of the program to learn that there was a choice among different CRC screening tests (difference –10.4%, 95% CI –20.1 to –0.8). Of note, Black/African American participants reported being more likely to sign up to receive text messages from their doctor’s office compared to white participants (difference 18.7%, 95% CI 7.0-30.3). Conclusions: Study findings demonstrate general acceptance of text messages to inform and support CRC screening shared decision-making. %M 37145859 %R 10.2196/40917 %U https://cancer.jmir.org/2023/1/e40917 %U https://doi.org/10.2196/40917 %U http://www.ncbi.nlm.nih.gov/pubmed/37145859 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 10 %N %P e44462 %T 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 %A Johansen,Simon Kristoffer %A Kanstrup,Anne Marie %A Haseli,Kian %A Stenmo,Visti Hildebrandt %A Thomsen,Janus Laust %A Rathleff,Michael Skovdal %+ Center for General Practice (CAM-AAU), Department of Clinical Medicine, Aalborg University, Fyrkildevej 7, 2nd floor, Aalborg East, 9220, Denmark, 45 60788895, skjohansen@dcm.aau.dk %K mobile health %K mHealth %K design %K patient physician relationship %K collaborative care %K shared decision-making %K adolescents %K parents %K knee pain %K patellofemoral pain %K Osgood Schlatter %K musculoskeletal %K general practice %K primary care %K mobile phone %D 2023 %7 28.4.2023 %9 Original Paper %J JMIR Hum Factors %G English %X 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. %M 37115609 %R 10.2196/44462 %U https://humanfactors.jmir.org/2023/1/e44462 %U https://doi.org/10.2196/44462 %U http://www.ncbi.nlm.nih.gov/pubmed/37115609 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e46187 %T Enhancing the Cardiovascular Safety of Hemodialysis Care Using Multimodal Provider Education and Patient Activation Interventions: Protocol for a Cluster Randomized Controlled Trial %A Veinot,Tiffany Christine %A Gillespie,Brenda %A Argentina,Marissa %A Bragg-Gresham,Jennifer %A Chatoth,Dinesh %A Collins Damron,Kelli %A Heung,Michael %A Krein,Sarah %A Wingard,Rebecca %A Zheng,Kai %A Saran,Rajiv %+ School of Information, University of Michigan, 4314 North Quad, 105 S State Street, Ann Arbor, MI, 48109-1285, United States, 1 734 615 8281, tveinot@umich.edu %K hemodialysis care %K patient peer mentoring %K telehealth %K digital checklist %K team training %K cluster randomized controlled trial %K pragmatic trial %D 2023 %7 20.4.2023 %9 Protocol %J JMIR Res Protoc %G English %X 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 × 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 %M 37079365 %R 10.2196/46187 %U https://www.researchprotocols.org/2023/1/e46187 %U https://doi.org/10.2196/46187 %U http://www.ncbi.nlm.nih.gov/pubmed/37079365 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e41726 %T Co-design Tensions Between Parents, Children, and Researchers Regarding Mobile Health Technology Design Needs and Decisions: Case Study %A Yip,Jason %A Wong,Kelly %A Oh,Isabella %A Sultan,Farisha %A Roldan,Wendy %A Lee,Kung Jin %A Huh,Jimi %+ Ewha Womans University, Ewha-POSCO Building (Social Sciences) #509, Seoul, 120-750, Republic of Korea, 82 02 3277 2227, kungjinlee@ewha.ac.kr %K just-in-time adaptive intervention %K JITAI %K mobile health %K mHealth %K participatory design %K co-design %K children and families %K Black, Indigenous, and people of color %K BIPOC %K child-computer interaction %K design %K children %K mobile intervention %K intervention %K development %K mobile phone %D 2023 %7 14.4.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Just-in-time adaptive interventions (JITAIs) in mobile health are an intervention design that provides behavior change support based on an individual’s changing and dynamic contextual state. However, few studies have documented how end users of JITAI technologies are involved in their development, particularly from historically marginalized families and children. Less is known for public health researchers and designers of the tensions that occur as families negotiate their needs. Objective: We aimed to broaden our understanding of how historically marginalized families are included in co-design from a public health perspective. We sought to address research questions surrounding JITAIs; co-design; and working with historically marginalized families, including Black, Indigenous, and people of color (BIPOC) children and adults, regarding improving sun protection behaviors. We sought to better understand value tensions in parents’ and children’s needs regarding mobile health technologies and how design decisions are made. Methods: We examined 2 sets of co-design data (local and web-based) pertaining to a larger study on mobile SunSmart JITAI technologies with families in Los Angeles, California, United States, who were predominantly of Latinx and multiracial backgrounds. In these co-design sessions, we conducted stakeholder analysis through perceptions of harms and benefits and an assessment of stakeholder views and values. We open coded the data and compared the developed themes using a value-sensitive design framework by examining value tensions to help organize our qualitative data. Our study is formatted through a narrative case study that captures the essential meanings and qualities that are difficult to present, such as quotes in isolation. Results: We presented 3 major themes from our co-design data: different experiences with the sun and protection, misconceptions about the sun and sun protection, and technological design and expectations. We also provided value flow (opportunities for design), value dam (challenges to design), or value flow or dam (a hybrid problem) subthemes. For each subtheme, we provided a design decision and a response we ended up making based on what was presented and the kinds of value tensions we observed. Conclusions: We provide empirical data to show what it is like to work with multiple BIPOC stakeholders in the roles of families and children. We demonstrate the use of the value tension framework to explain the different needs of multiple stakeholders and technology development. Specifically, we demonstrate that the value tension framework helps sort our participants’ co-design responses into clear and easy-to-understand design guidelines. Using the value tension framework, we were able to sort the tensions between children and adults, family socioeconomic and health wellness needs, and researchers and participants while being able to make specific design decisions from this organized view. Finally, we provide design implications and guidance for the development of JITAI mobile interventions for BIPOC families. %M 37058350 %R 10.2196/41726 %U https://formative.jmir.org/2023/1/e41726 %U https://doi.org/10.2196/41726 %U http://www.ncbi.nlm.nih.gov/pubmed/37058350 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e45002 %T Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review %A Cumyn,Annabelle %A Ménard,Jean-Frédéric %A Barton,Adrien %A Dault,Roxanne %A Lévesque,Frédérique %A Ethier,Jean-François %+ Groupe de recherche interdisciplinaire en informatique de la santé, Faculté des sciences/Faculté de médecine et des sciences de la santé, Université de Sherbrooke, 2500 boul. Université, Sherbrooke, QC, J1K 2R1, Canada, 1 819 346 1110 ext 74977, jean-francois.ethier@usherbrooke.ca %K transparency %K information %K means of communication %K public %K patients %K secondary use %K health data %K learning health systems %D 2023 %7 13.4.2023 %9 Review %J J Med Internet Res %G English %X 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. %M 37052967 %R 10.2196/45002 %U https://www.jmir.org/2023/1/e45002 %U https://doi.org/10.2196/45002 %U http://www.ncbi.nlm.nih.gov/pubmed/37052967 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e41832 %T General Practices’ Experiences With Patients’ Web-Based Access to Medical Records: Survey Study %A Keuper,Jelle %A Batenburg,Ronald %A van Tuyl,Lilian %A Verheij,Robert %+ Netherlands Institute for Health Services Research, Otterstraat 118, Utrecht, 3513CR, Netherlands, 31 627460492, j.keuper@nivel.nl %K patient access to records %K electronic health record %K patient portals %K general practice %K administrative burden %K health information %K shared decision-making %K health care professionals %D 2023 %7 7.4.2023 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 37027195 %R 10.2196/41832 %U https://www.jmir.org/2023/1/e41832 %U https://doi.org/10.2196/41832 %U http://www.ncbi.nlm.nih.gov/pubmed/37027195 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e43342 %T Assessing Patients’ Critical Health Literacy and Identifying Associated Factors: Cross-sectional Study %A Shan,Yi %A Ji,Meng %A Dong,Zhaogang %A Xing,Zhaoquan %A Xu,Xiaofei %+ School of Languages and Cultures, The University of Sydney, A18 - Brennan MacCallum Building, Sydney, NSW 2006, Australia, 61 2 9351 4512, christine.ji@sydney.edu.au %K critical health literacy %K Chinese patients %K latent class modeling %K limited critical health literacy %K associated factors %D 2023 %7 5.4.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Previous studies have revealed that functional health literacy plays a less important role than communicative and critical health literacy (CRHL) and that communicative literacy and CRHL contribute more to better patient self-management. Although improving health literacy has been identified as an approach to fostering community involvement and empowerment, CRHL may be regarded as the neglected domain of health literacy, rarely achieving any focus or interventions that claim to be working toward this outcome. Considering this research background, close scholarly attention needs to be paid to CRHL and its associated factors. Objective: This study aimed to assess CRHL and identify essential factors closely associated with the status of CRHL among Chinese patients and to provide some implications for clinical practice, health education, medical research, and public health policy making. Methods: We conducted this cross-sectional study, which lasted from April 8, 2022, to September 23, 2022, following the steps below. We first designed a 4-section survey questionnaire and then recruited Mandarin Chinese–speaking patients from Qilu Hospital of Shandong University, China, using randomized sampling. Subsequently, we administered the questionnaire via wenjuanxing, the most popular web-based survey platform in China, between July 20, 2022, and August 19, 2022. Finally, we used latent class modeling to analyze the valid data collected to classify the patient participants and identify the factors potentially associated with different CRHL levels. Results: All data in the 588 returned questionnaires were valid. On the basis of the collected data, we classified the patient participants into 3 latent classes of limited, moderate, and adequate CRHL and identified 4 factors associated with limited CRHL, including middle and old age, male sex, lower educational attainment, and low internal drive to maintain one’s health. Conclusions: Using latent class modeling, we identified 3 classes of CRHL and 4 factors associated with limited CRHL among the Chinese study participants. These literacy classes and the predicting factors ascertained in this study can provide some implications for clinical practice, health education, medical research, and health policy making. %M 37018027 %R 10.2196/43342 %U https://www.jmir.org/2023/1/e43342 %U https://doi.org/10.2196/43342 %U http://www.ncbi.nlm.nih.gov/pubmed/37018027 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 9 %N %P e43652 %T Decisions and Decisional Needs of Canadians From all Provinces and Territories During the COVID-19 Pandemic: Population-Based Cross-sectional Surveys %A Stacey,Dawn %A Ludwig,Claire %A Archambault,Patrick %A Smith,Maureen %A Taljaard,Monica %A Carley,Meg %A Plourde,Karine %A Boland,Laura %A Gogovor,Amédé %A Graham,Ian %A Kobewka,Daniel %A McLean,Robert K D %A Nelson,Michelle L A %A Vanderspank-Wright,Brandi %A Légaré,France %+ School of Nursing, Faculty of Health Sciences, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5, Canada, 1 613 562 5800 ext 8413, dstacey@uottawa.ca %K health care decisions %K decisional conflict %K decision regret %K shared decision-making %K COVID-19 %K older adults %K caregivers %K parents %K public health decision %K health care %K health outcome %K pandemic preparedness %K public health policy %D 2023 %7 21.3.2023 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Never before COVID-19 had Canadians faced making health-related decisions in a context of significant uncertainty. However, little is known about which type of decisions and the types of difficulties that they faced. Objective: We sought to identify the health-related decisions and decisional needs of Canadians. Methods: Our study was codesigned by researchers and knowledge users (eg, patients, clinicians). Informed by the CHERRIES (the Checklist for Reporting Results of Internet E-Surveys) reporting guideline, we conducted 2 online surveys of random samples drawn from the Leger consumer panel of 400,000 Canadians. Eligible participants were adults (≥18 years) who received or were receiving any health services in the past 12 months for themselves (adults) or for their child (parent) or senior with cognitive impairment (caregiver). We assessed decisions and decisional needs using questions informed by the Ottawa Decision Support Framework, including decisional conflict and decision regret using the Decision Conflict Scale (DCS) and the Decision Regret Scale (DRS), respectively. Descriptive statistics were conducted for adults who had decided for themselves or on behalf of someone else. Significant decisional conflict (SDC) was defined as a total DCS score of >37.5 out of 100, and significant decision regret was defined as a total DRS score of >25 out of 100. Results: From May 18 to June 4, 2021, 14,459 adults and 6542 parents/caregivers were invited to participate. The invitation view rate was 15.5% (2236/14,459) and 28.3% (1850/6542); participation rate, 69.3% (1549/2236) and 28.7% (531/1850); and completion rate, 97.3% (1507/1549) and 95.1% (505/531), respectively. The survey was completed by 1454 (97.3%) adults and 438 (95.1%) parents/caregivers in English (1598/1892, 84.5%) or French (294/1892, 15.5%). Respondents from all 10 Canadian provinces and the northern territories represented a range of ages, education levels, civil statuses, ethnicities, and annual household income. Of 1892 respondents, 541 (28.6%) self-identified as members of marginalized groups. The most frequent decisions were (adults vs parents/caregivers) as follows: COVID-19 vaccination (490/1454, 33.7%, vs 87/438, 19.9%), managing a health condition (253/1454, 17.4%, vs 47/438, 10.7%), other COVID-19 decisions (158/1454, 10.9%, vs 85/438, 19.4%), mental health care (128/1454, 8.8%, vs 27/438, 6.2%), and medication treatments (115/1454, 7.9%, vs 23/438, 5.3%). Caregivers also reported decisions about moving family members to/from nursing or retirement homes (48/438, 11.0%). Adults (323/1454, 22.2%) and parents/caregivers (95/438, 21.7%) had SDC. Factors making decisions difficult were worrying about choosing the wrong option (557/1454, 38.3%, vs 184/438, 42.0%), worrying about getting COVID-19 (506/1454, 34.8%, vs 173/438, 39.5%), public health restrictions (427/1454, 29.4%, vs 158/438, 36.1%), information overload (300/1454, 20.6%, vs 77/438, 17.6%), difficulty separating misinformation from scientific evidence (297/1454, 20.4%, vs 77/438, 17.6%), and difficulty discussing decisions with clinicians (224/1454, 15.4%, vs 51/438, 11.6%). For 1318 (90.6%) adults and 366 (83.6%) parents/caregivers who had decided, 353 (26.8%) and 125 (34.2%) had significant decision regret, respectively. In addition, 1028 (50%) respondents made their decision alone without considering the opinions of clinicians. Conclusions: During COVID-19, Canadians who responded to the survey faced several new health-related decisions. Many reported unmet decision-making needs, resulting in SDC and decision regret. Interventions can be designed to address their decisional needs and support patients facing new health-related decisions. %M 36688986 %R 10.2196/43652 %U https://publichealth.jmir.org/2023/1/e43652 %U https://doi.org/10.2196/43652 %U http://www.ncbi.nlm.nih.gov/pubmed/36688986 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e41626 %T Students’ Perception of Formative Assessment as an Instructional Tool in Competency-Based Medical Education: Proposal for a Proof-of-Concept Study %A Otaki,Farah %A Gholami,Mandana %A Fawad,Iman %A Akbar,Anjum %A Banerjee,Yajnavalka %+ College of Medicine, Mohammed Bin Rashid University of Medicine and Health Sciences, Al Razi St, Umm Hurair 2, Dubai Healthcare City, Dubai, United Arab Emirates, 971 568345125, ydbanerrji@gmail.com %K medical education %K formative assessment %K summative assessment %K student %K education %K competency-based %K proof-of-concept %K perception %K biochemistry %K curriculum %K teacher %K educator %K medical school %K skill assessment %K knowledge assessment %K knowledge evaluation %D 2023 %7 20.3.2023 %9 Proposal %J JMIR Res Protoc %G English %X Background: In competency-based medical education (CBME), “Assessment for learning” or “Formative Assessment” (FA) plays a key role in augmenting student learning. FAs help students to measure their progress over time, enabling them to proactively improve their performance in summative assessments. FAs also encourage students to learn in a way where they address their knowledge gaps and gaps in their conceptualization of the subject matter. The effectiveness of an FA, as a learning and development instrument, relies on the degree of student involvement in the corresponding educational intervention’s design and implementation. The extent of students’ engagement in FA can be evaluated by appraising their perception regarding the educational intervention itself. Objective: This proof-of-concept study aims to develop a systemic understanding of a Formative Assessment as an Instructional Tool (FAIS) implemented in a biochemistry course in the Basic Medical Sciences component of an undergraduate entry, CBME. Methods: The educational intervention in question is an FAIS, which is implemented in a biochemistry course in the first semester of a 6-year bachelor of medicine, bachelor of surgery program. When developing the FAIS, each area of knowledge, skills, and attitudes were considered. Assessment formats are developed per Miller’s learning pyramid. This multiphase study is meant to rely on a convergent mixed methods design, where qualitative and quantitative data are independently collected and analyzed. Thereafter, the outputs of analyses are systematically merged using joint display analysis process. Qualitative data are collected through a focus group session that captures the students’ perception toward the FAIS. Data collection, integral to this focus group session, is exploratory. The inductive qualitative data analysis follows Braun and Clarke’s 6-step framework. The quantitative component of this study revolves around investigating the effect of the FAIS on the course’s summative assessment. The summative assessment performance of the 71 students, enrolled in the FAIS cohort, will be compared to that of the students in the non-FAIS cohort. The total duration of the proposed multiphase research study is 6 months. Results: This proposed multiphase study is expected to showcase, from a systemic perspective, the effectiveness of the respective educational intervention. It will shed light on the participating students’ attitudes in relation to the usefulness of FA in achieving competency goals and in fostering self-directed learning. The proposed study could also uncover the hypothesized association between the FA intervention and enhanced performance in summative assessments. Conclusions: Our findings will generate evidence regarding the application of FAs, which can be leveraged by other medical educators in contexts similar to those under investigation. International Registered Report Identifier (IRRID): DERR1-10.2196/41626 %M 36939831 %R 10.2196/41626 %U https://www.researchprotocols.org/2023/1/e41626 %U https://doi.org/10.2196/41626 %U http://www.ncbi.nlm.nih.gov/pubmed/36939831 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e37953 %T Effectiveness of Interactive Digital Decision Aids in Prenatal Screening Decision-making: Systematic Review and Meta-analysis %A Wong,Hong Yat Conrad %A Asim,Saba %A Feng,Qi %A Fu,Sherry Xiao-hong %A Sahota,Daljit Singh %A So,Po Lam %A Dong,Dong %+ The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong, 4/F School of Public Health Building, Prince of Wales Hospital, Shatin, Hong Kong, 852 22528461, dongdong@cuhk.edu.hk %K informed decision-making %K interactive digital decision aids %K pregnancy %K prenatal screening %K systematic review %D 2023 %7 14.3.2023 %9 Review %J J Med Internet Res %G English %X Background: Increasing prenatal screening options and limited consultation time have made it difficult for pregnant women to participate in shared decision-making. Interactive digital decision aids (IDDAs) could integrate interactive technology into health care to a facilitate higher-quality decision-making process. Objective: The objective of this study was to assess the effectiveness of IDDAs on pregnant women’s decision-making regarding prenatal screening. Methods: We searched Cochrane Central Register of Controlled Trials, MEDLINE, Embase, PsycINFO, World Health Organization International Clinical Trials Registry Platform, Google Scholar, and reference lists of included studies until August 2021. We included the randomized controlled trials (RCTs) that compared the use of IDDAs (fulfilling basic criteria of International Patient Decision Aid Standards Collaboration and these were interactive and digital) as an adjunct to standard care with standard care alone and involved pregnant women themselves in prenatal screening decision-making. Data on primary outcomes, that is, knowledge and decisional conflict, and secondary outcomes were extracted, and meta-analyses were conducted based on standardized mean differences (SMDs). Subgroup analysis based on knowledge was performed. The Cochrane risk-of-bias tool was used for risk-of-bias assessment. Results: Eight RCTs were identified from 10,283 references, of which 7 were included in quantitative synthesis. Analyses showed that IDDAs increased knowledge (SMD 0.58, 95% CI 0.26-0.90) and decreased decisional conflict (SMD –0.15, 95% CI –0.25 to –0.05). Substantial heterogeneity in knowledge was identified, which could not be completely resolved through subgroup analysis. Conclusions: IDDAs can improve certain aspects of decision-making in prenatal screening among pregnant women, but the results require cautious interpretation. %M 36917146 %R 10.2196/37953 %U https://www.jmir.org/2023/1/e37953 %U https://doi.org/10.2196/37953 %U http://www.ncbi.nlm.nih.gov/pubmed/36917146 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e41867 %T Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With “Patient Influencers” %A Willis,Erin %A Friedel,Kate %A Heisten,Mark %A Pickett,Melissa %A Bhowmick,Amrita %+ University of Colorado Boulder, 478 UCB, 1511 University Ave., Boulder, CO, 80309, United States, 1 3034927161, erin.willis@colorado.edu %K social media %K social media influencer %K pharmaceutical advertising %K health literacy %D 2023 %7 13.3.2023 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 36912881 %R 10.2196/41867 %U https://www.jmir.org/2023/1/e41867 %U https://doi.org/10.2196/41867 %U http://www.ncbi.nlm.nih.gov/pubmed/36912881 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e37305 %T 360° Diagnostic Tool to Personalize Lifestyle Advice in Primary Care for People With Type 2 Diabetes: Development and Usability Study %A Harakeh,Zeena %A de Hoogh,Iris M %A van Keulen,Hilde %A Kalkman,Gino %A van Someren,Eugene %A van Empelen,Pepijn %A Otten,Wilma %+ Department of Child Health, TNO, Netherlands Organization for Applied Scientific Research, Sylviusweg 71, Leiden, 2333 BE, Netherlands, 31 11615907, zeena.harakeh@tno.nl %K type 2 diabetes %K diagnostic tool %K holistic approach %K personalized advice %K shared decision-making %K health professionals %D 2023 %7 7.3.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Various multifaceted factors need to be addressed to improve the health and quality of life of people with type 2 diabetes (T2D). Therefore, we developed a web-based decision support tool that comprises a more holistic diagnosis (including 4 domains: body, thinking and feeling, behavior, and environment) and personalized advice. This 360° diagnostic tool enables people with T2D and health care professionals at the general practice to obtain an overview of the most important T2D-related issues and, subsequently, determine the most suitable intervention for the person with T2D. Objective: This study aimed to describe the systematic and iterative development and evaluation of the web-based 360° diagnostic tool. Methods: We defined the requirements for the web-based 360° diagnostic tool based on previously developed tools, a literature review, and inputs from a multidisciplinary team of experts. As part of the conceptualization, we defined 3 requirements: diagnostics; feedback; and advice, consultation, and follow-up. Next, we developed and designed the content for each of these requirements. We evaluated the diagnostic part of the tool (ie, measurement instruments and visualization) with a qualitative design, in a usability study with a think-aloud strategy and interview questions, among 8 people with T2D at a Dutch general practice. Results: For each of the 4 domains, specific parameters and underlying elements were selected, and measurement instruments (including clinical data and questionnaires) were chosen. Cutoff values were defined to identify high-, middle-, and low-ranking scores, and decision rules were developed and implemented using R scripts and algorithms. A traffic light color visual design was created (profile wheel) to provide an overview of the scores per domain. We mapped the interventions that could be added to the tool and developed a protocol designed as a card deck with motivational interview steps. Furthermore, the usability study showed that people with T2D perceived the tool as easy to use, useful, easy to understand, and insightful. Conclusions: Preliminary evaluation of the 360° diagnostic tool by experts, health care professionals, and people with T2D showed that the tool was considered relevant, clear, and practical. The iterative process provided insights into the areas of improvement, which were implemented. The strengths, shortcomings, future use, and challenges are also discussed. %M 36881463 %R 10.2196/37305 %U https://formative.jmir.org/2023/1/e37305 %U https://doi.org/10.2196/37305 %U http://www.ncbi.nlm.nih.gov/pubmed/36881463 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e42231 %T Safety Concerns in Mobility-Assistive Products for Older Adults: Content Analysis of Online Reviews %A Mali,Namrata %A Restrepo,Felipe %A Abrahams,Alan %A Sands,Laura %A Goldberg,David M %A Gruss,Richard %A Zaman,Nohel %A Shields,Wendy %A Omaki,Elise %A Ehsani,Johnathon %A Ractham,Peter %A Kaewkitipong,Laddawan %+ Center of Excellence in Operations and Information Management, Thammasat Business School, Thammasat University, 2 Prachan Rd., Pranakorn, Bangkok, 10200, Thailand, 66 26132200, laddawan@tbs.tu.ac.th %K injury prevention %K consumer-reported injuries %K older adults %K online reviews %K mobility-assistive devices %K product failures %D 2023 %7 2.3.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Older adults who have difficulty moving around are commonly advised to adopt mobility-assistive devices to prevent injuries. However, limited evidence exists on the safety of these devices. Existing data sources such as the National Electronic Injury Surveillance System tend to focus on injury description rather than the underlying context, thus providing little to no actionable information regarding the safety of these devices. Although online reviews are often used by consumers to assess the safety of products, prior studies have not explored consumer-reported injuries and safety concerns within online reviews of mobility-assistive devices. Objective: This study aimed to investigate injury types and contexts stemming from the use of mobility-assistive devices, as reported by older adults or their caregivers in online reviews. It not only identified injury severities and mobility-assistive device failure pathways but also shed light on the development of safety information and protocols for these products. Methods: Reviews concerning assistive devices were extracted from the “assistive aid” categories, which are typically intended for older adult use, on Amazon’s US website. The extracted reviews were filtered so that only those pertaining to mobility-assistive devices (canes, gait or transfer belts, ramps, walkers or rollators, and wheelchairs or transport chairs) were retained. We conducted large-scale content analysis of these 48,886 retained reviews by coding them according to injury type (no injury, potential future injury, minor injury, and major injury) and injury pathway (device critical component breakage or decoupling; unintended movement; instability; poor, uneven surface handling; and trip hazards). Coding efforts were carried out across 2 separate phases in which the team manually verified all instances coded as minor injury, major injury, or potential future injury and established interrater reliability to validate coding efforts. Results: The content analysis provided a better understanding of the contexts and conditions leading to user injury, as well as the severity of injuries associated with these mobility-assistive devices. Injury pathways—device critical component failures; unintended device movement; poor, uneven surface handling; instability; and trip hazards—were identified for 5 product types (canes, gait and transfer belts, ramps, walkers and rollators, and wheelchairs and transport chairs). Outcomes were normalized per 10,000 posting counts (online reviews) mentioning minor injury, major injury, or potential future injury by product category. Overall, per 10,000 reviews, 240 (2.4%) described mobility-assistive equipment–related user injuries, whereas 2318 (23.18%) revealed potential future injuries. Conclusions: This study highlights mobility-assistive device injury contexts and severities, suggesting that consumers who posted online reviews attribute most serious injuries to a defective item, rather than user misuse. It implies that many mobility-assistive device injuries may be preventable through patient and caregiver education on how to evaluate new and existing equipment for risk of potential future injury. %M 36862459 %R 10.2196/42231 %U https://www.jmir.org/2023/1/e42231 %U https://doi.org/10.2196/42231 %U http://www.ncbi.nlm.nih.gov/pubmed/36862459 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e42507 %T Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review %A Kassam,Iman %A Ilkina,Daria %A Kemp,Jessica %A Roble,Heba %A Carter-Langford,Abigail %A Shen,Nelson %+ Campbell Family Mental Health Research Institute, Centre for Addiction and Mental Health, 60 White Squirrel Way, Toronto, ON, M6J 1H4, Canada, 1 416 535 8501, nelson.shen@camh.ca %K consent %K electronic consent %K eConsent %K personal health information %K patient engagement %K digital health %K health IT %K privacy %K eHealth %K data sharing %K artificial intelligence %D 2023 %7 10.2.2023 %9 Review %J J Med Internet Res %G English %X 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. %M 36763409 %R 10.2196/42507 %U https://www.jmir.org/2023/1/e42507 %U https://doi.org/10.2196/42507 %U http://www.ncbi.nlm.nih.gov/pubmed/36763409 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e44144 %T A Patient-Centered Website (Within Reach) to Foster Informed Decision-making About Upper Extremity Vascularized Composite Allotransplantation: Development and Usability Study %A Vanterpool,Karen B %A Gacki-Smith,Jessica %A Kuramitsu,Brianna %A Downey,Max %A Nordstrom,Michelle J %A Luken,Michelle %A Riggleman,Tiffany %A Fichter,Shannon %A Altema,Withney %A Brucker,James B %A Cooney,Carisa M %A Dumanian,Gregory %A Jensen,Sally %A Levan,Macey %A Tintle,Scott M %A Brandacher,Gerald %A Gordon,Elisa J %+ Department of Surgery, Vanderbilt University Medical Center, 1161 21st Avenue South, D-4314 MCN, Nashville, TN, 37232-2730, United States, 1 708 646 7973, elisa.gordon@vumc.org %K hand transplantation %K patient education %K upper limb amputation %K interviews %K focus groups %K disability %K decision-making %K accessible %D 2023 %7 7.2.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Upper extremity (UE) vascularized composite allotransplantation (VCA; hand transplantation) is a reconstructive treatment option for patients with UE loss. Approximately 37 UE VCAs have been performed in the United States to date; thus, little is known about long-term psychosocial outcomes and whether the benefits outweigh the risks. To make an informed treatment decision, patients must understand the procedure, risks, and potential benefits of UE VCA. However, few educational resources are publicly available providing unbiased, comprehensive information about UE VCA. Objective: This paper described the development of a neutral, and accessible, educational website supporting informed decision-making about UE VCA as a treatment option for individuals with UE amputations. Methods: Website content development was informed by 9 focus groups conducted with individuals with UE amputations at 3 study sites. After initial website development, we conducted usability testing to identify ways to improve navigability, design, content, comprehension, and cultural sensitivity. Participants were administered the After-Scenario Questionnaire to assess user performance after completing navigational tasks, System Usability Scale to measure the perceived usability of the website, and Net Promoter Score to measure user satisfaction. Quantitative data were analyzed using descriptive statistics. Qualitative data were analyzed using rapid thematic analysis. Results: A total of 44 individuals with UE amputations participated in focus groups (n=37, 84%) and usability testing (n=14, 32%). Most participants in the focus groups and usability testing were male (24/37, 65% and 11/14, 79%, respectively) and White (27/37, 73% and 9/14, 64%, respectively), had unilateral limb loss (22/37, 59% and 12/14, 86%, respectively), and had mean ages of 48 (SD 9.2) and 50 (SD 12.0) years, respectively. Focus group results are organized into accessibility, website design, website development, website tone and values, sitemap, terminology, images and videos, and tables and graphics. Usability testing revealed that participants had a positive impression of the website. The mean After-Scenario Questionnaire score of 1.3 to 2.3 across task scenarios indicated high satisfaction with website usability, the mean System Usability Scale score of 88.9 indicated user satisfaction with website usability, and the mean Net Promoter Score of 9.6 indicated that users were enthusiastic and would likely refer individuals to the website. Conclusions: The findings suggest that our educational website, Within Reach, provides neutral, patient-centered information and may be a useful resource about UE VCA for individuals with UE amputations, their families, and health care professionals. Health care professionals may inform UE VCA candidates about Within Reach to supplement current VCA education processes. Within Reach serves as a resource about treatment options for patients preparing for scheduled or recovering from traumatic UE amputations. Future research should assess whether Within Reach improves knowledge about UE VCA and enhances informed decision-making about UE VCA as a treatment option. %M 36749618 %R 10.2196/44144 %U https://formative.jmir.org/2023/1/e44144 %U https://doi.org/10.2196/44144 %U http://www.ncbi.nlm.nih.gov/pubmed/36749618 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e39325 %T Perspective of People With Type 2 Diabetes Toward Self-management: Qualitative Study Based on Web Crawler Data %A Hu,Lei %A Jin,Xiaoyuan %A Li,Yundong %A Wang,Hongmei %A Yang,Dan %A Zhang,Ziqing %A He,Xiaoyu %A Liao,Jing %A Chen,Weiju %A Gong,Ni %+ School of Nursing, Jinan University, No. 601 West Huangpu Avenue, Tianhe District, Guangzhou, 510630, China, 86 15013217344, gongni_1025@163.com %K diabetes %K health management %K self-management %K health education %K patient needs %D 2023 %7 2.2.2023 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 36729569 %R 10.2196/39325 %U https://www.jmir.org/2023/1/e39325 %U https://doi.org/10.2196/39325 %U http://www.ncbi.nlm.nih.gov/pubmed/36729569 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e40466 %T Internet Use for Obtaining Medicine Information: Cross-sectional Survey %A Bergmo,Trine Strand %A Sandsdalen,Vilde %A Manskow,Unn Sollid %A Småbrekke,Lars %A Waaseth,Marit %+ Norwegian Centre for E-health Research, University Hospital of North Norway, Sykehusveien 23, Tromsø, N-9019, Norway, 47 48003565, trine.bergmo@ehealthresearch.no %K credibility %K credible %K cross-sectional %K eHealth %K health information %K information behavior %K information retrieval %K information science %K information seeking %K internet %K medication %K medicine information %K misinformation %K patient education %K pharmaceutical %K pharmacist %K pharmacy %K survey %K trust %K web-based information %D 2023 %7 2.2.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: The internet is increasingly being used as a source of medicine-related information. People want information to facilitate decision-making and self-management, and they tend to prefer the internet for ease of access. However, it is widely acknowledged that the quality of web-based information varies. Poor interpretation of medicine information can lead to anxiety and poor adherence to drug therapy. It is therefore important to understand how people search, select, and trust medicine information. Objective: The objectives of this study were to establish the extent of internet use for seeking medicine information among Norwegian pharmacy customers, analyze factors associated with internet use, and investigate the level of trust in different sources and websites. Methods: This is a cross-sectional study with a convenience sample of pharmacy customers recruited from all but one community pharmacy in Tromsø, a medium size municipality in Norway (77,000 inhabitants). Persons (aged ≥16 years) able to complete a questionnaire in Norwegian were asked to participate in the study. The recruitment took place in September and October 2020. Due to COVID-19 restrictions, social media was also used to recruit medicine users. Results: A total of 303 respondents reported which sources they used to obtain information about their medicines (both prescription and over the counter) and to what extent they trusted these sources. A total of 125 (41.3%) respondents used the internet for medicine information, and the only factor associated with internet use was age. The odds of using the internet declined by 5% per year of age (odds ratio 0.95, 95% CI 0.94-0.97; P=.048). We found no association between internet use and gender, level of education, or regular medicine use. The main purpose reported for using the internet was to obtain information about side effects. Other main sources of medicine information were physicians (n=191, 63%), pharmacy personnel (n=142, 47%), and medication package leaflets (n=124, 42%), while 36 (12%) respondents did not obtain medicine information from any sources. Note that 272 (91%) respondents trusted health professionals as a source of medicine information, whereas 58 (46%) respondents who used the internet trusted the information they found on the internet. The most reliable websites were the national health portals and other official health information sites. Conclusions: Norwegian pharmacy customers use the internet as a source of medicine information, but most still obtain medicine information from health professionals and packet leaflets. People are aware of the potential for misinformation on websites, and they mainly trust high-quality sites run by health authorities. %M 36729577 %R 10.2196/40466 %U https://formative.jmir.org/2023/1/e40466 %U https://doi.org/10.2196/40466 %U http://www.ncbi.nlm.nih.gov/pubmed/36729577 %0 Journal Article %@ 2561-1011 %I JMIR Publications %V 7 %N %P e39490 %T Patient-Facing Clinical Decision Support for High Blood Pressure Control: Patient Survey %A Dorr,David %A D'Autremont,Chris %A Richardson,Joshua E %A Bobo,Michelle %A Terndrup,Christopher %A Dunne,M J %A Cheng,Anthony %A Rope,Robert %+ Oregon Health & Science University, 3181 SW Sam Jackson park Rd, Portland, OR, 97239, United States, 1 503 494 8562, dorrd@ohsu.edu %K high blood pressure %K hypertension %K clinical decision support %K shared decision-making %K blood pressure control %K decision-making support %K patient engagement %K patient support tool %D 2023 %7 23.1.2023 %9 Original Paper %J JMIR Cardio %G English %X Background: High blood pressure (HBP) affects nearly half of adults in the United States and is a major factor in heart attacks, strokes, kidney disease, and other morbidities. To reduce risk, guidelines for HBP contain more than 70 recommendations, including many related to patient behaviors, such as home monitoring and lifestyle changes. Thus, the patient’s role in controlling HBP is crucial. Patient-facing clinical decision support (CDS) tools may help patients adhere to evidence-based care, but customization is required. Objective: Our objective was to understand how to adapt CDS to best engage patients in controlling HBP. Methods: We conducted a mixed methods study with two phases: (1) survey-guided interviews with a limited cohort and (2) a nationwide web-based survey. Participation in each phase was limited to adults aged between 18 and 85 years who had been diagnosed with hypertension. The survey included general questions that assessed goal setting, treatment priorities, medication load, comorbid conditions, satisfaction with blood pressure (BP) management, and attitudes toward CDS, and also a series of questions regarding A/B preferences using paired information displays to assess perceived trustworthiness of potential CDS user interface options. Results: We conducted 17 survey-guided interviews to gather patient needs from CDS, then analyzed results and created a second survey of 519 adults with clinically diagnosed HBP. A large majority of participants reported that BP control was a high priority (83%), had monitored BP at home (82%), and felt comfortable using technology (88%). Survey respondents found displays with more detailed recommendations more trustworthy (56%-77% of them preferred simpler displays), especially when incorporating social trust and priorities from providers and patients like them, but had no differences in action taken. Conclusions: Respondents to the survey felt that CDS capabilities could help them with HBP control. The more detailed design options for BP display and recommendations messaging were considered the most trustworthy yet did not differentiate perceived actions. %M 36689260 %R 10.2196/39490 %U https://cardio.jmir.org/2023/1/e39490 %U https://doi.org/10.2196/39490 %U http://www.ncbi.nlm.nih.gov/pubmed/36689260 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e42837 %T The Evaluation of Web-Based Communication Interventions to Support Decisions About COVID-19 Vaccination Among Patients With Underlying Medical Conditions: Protocol for a Randomized Controlled Trial %A Lee,Minjung %A Oh,Bumjo %A Yoon,Nan-He %A Kim,Shinkyeong %A Jung,Young-Il %+ Department of Environmental Health, Korea National Open University, 86, Daehak-ro, Jongno-gu, Seoul, 03087, Republic of Korea, 82 02 3668 4701, extra012@knou.ac.kr %K COVID-19 %K vaccine %K decision-making %K randomized controlled trial %K patient decision aid %D 2023 %7 19.1.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: The timeliness of raising vaccine acceptance and uptake among the public is essential to overcoming COVID-19; however, the decision-making process among patients with underlying medical conditions is complex, leading individuals to vaccine hesitancy because of their health status. Although vaccine implementation is more effective when deployed as soon as possible, vaccine hesitancy is a significant threat to the success of vaccination programs. Objective: This study aims to evaluate the effectiveness of a communication tool for patients with underlying medical conditions who should decide whether to receive a COVID-19 vaccine. Methods: This 3-arm prospective randomized controlled trial will test the effect of the developed communication intervention, which is fully automated, patient decision aid (SMART-DA), and user-centered information (SMART-DA-α). The web-based intervention was developed to help decision-making regarding COVID-19 vaccination among patients with underlying medical conditions. Over 450 patients will be enrolled on the web from a closed panel access website and randomly assigned to 1 of 3 equal groups stratified by their underlying disease, sex, age, and willingness to receive a COVID-19 vaccine. SMART-DA-α provides additional information targeted at helping patients’ decision-making regarding COVID-19 vaccination. Implementation outcomes are COVID-19 vaccination intention, vaccine knowledge, decisional conflict, stress related to decision-making, and attitudes toward vaccination, and was self-assessed through questionnaires. Results: This study was funded in 2020 and approved by the Clinical Research Information Service, Republic of Korea. Data were collected from December 2021 to January 2022. This paper was initially submitted before data analysis. The results are expected to be published in the winter of 2023. Conclusions: We believe that the outcomes of this study will provide valuable new insights into the potential of decision aids for supporting informed decision-making regarding COVID-19 vaccination and discovering the barriers to making informed decisions regarding COVID-19 vaccination, especially among patients with underlying medical conditions. This study will provide knowledge about the common needs, fears, and perceptions concerning vaccines among patients, which can help tailor information for individuals and develop policies to support them. Trial Registration: Korea Clinical Information Service KCT0006945; https://cris.nih.go.kr/cris/search/detailSearch.do/20965 International Registered Report Identifier (IRRID): DERR1-10.2196/42837 %M 36599054 %R 10.2196/42837 %U https://www.researchprotocols.org/2023/1/e42837 %U https://doi.org/10.2196/42837 %U http://www.ncbi.nlm.nih.gov/pubmed/36599054 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e39965 %T Implementation of Shared Decision-Making Within Internet Hospitals in China Based on Patients’ Needs: Feasibility Study and Content Analysis %A Yu,Tianzhi %A Jin,Chunjie %A Wu,Xiaodan %A Yue,Dianmin %+ School of Economics and Management, Hebei University of Technology, No. 5340 Siping Road Beichen District, Tianjin, 300401, China, 86 13920955339, dmingyue@hebut.edu.cn %K internet hospital %K shared decision-making between doctors and patients %K patient needs %K feasibility %D 2023 %7 6.1.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Internet hospitals are developing rapidly in China, and their convenient and efficient medical services are being increasingly recognized by patients. Many hospitals have set up their own internet hospitals to provide web-based medical services. Tianjin Medical University General Hospital has established a multidisciplinary and comprehensive internet hospital to provide diversified medical services according to the needs of patients. A way to further improve web-based medical services is by examining how shared decision-making (SDM) can be carried out in internet hospital diagnosis and treatment services, thereby improving patients’ medical experience. Objective: The aim of this study was to analyze the feasibility of implementing doctor-patient SDM in internet hospital diagnosis and treatment services based on patients’ needs in China. Methods: In this study, the medical data of 10 representative departments in the internet hospital of Tianjin Medical University General Hospital from January 1 to January 31, 2022, were extracted as a whole; 25,266 cases were selected. After excluding 2056 cases with incomplete information, 23,210 cases were finally included in this study. A chi-square test was performed to analyze the characteristics and medical service needs of internet hospital patients in order to identify the strengths of SDM in internet hospitals. Results: The internet hospital patients from 10 clinical departments were significantly different in terms of gender (χ29=3425.6; P<.001), age (χ236=27,375.8; P<.001), mode of payment (χ29=3501.1; P<.001), geographic distribution (χ29=347.2; P<.001), and duration of illness (χ236=2863.3; P<.001). Patient medical needs included drug prescriptions, examination prescriptions, medical record explanations, drug use instructions, prehospitalization preparations, further consultations with doctors (unspecified purpose), treatment plan consultations, initial diagnoses based on symptoms, and follow-up consultations after discharge. The medical needs of the patients in different clinical departments were significantly different (χ272=8465.5; P<.001). Conclusions: Our study provides a practical and theoretical basis for the feasibility of doctor-patient SDM in internet hospitals and offers some implementation strategies. We focus on the application of SDM in web-based diagnosis and treatment in internet hospitals rather than on a disease or a disease management software. The medical service needs of different patient groups can be effectively obtained from an internet hospital, which provides the practical conditions for the promotion of doctor-patient SDM. Our findings show that the internet hospital platform expands the scope of SDM and is a new way for the large-scale application of doctor-patient SDM. %M 36607710 %R 10.2196/39965 %U https://formative.jmir.org/2023/1/e39965 %U https://doi.org/10.2196/39965 %U http://www.ncbi.nlm.nih.gov/pubmed/36607710 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 8 %N 12 %P e41834 %T Multifactor Quality and Safety Analysis of Antimicrobial Drugs Sold by Online Pharmacies That Do Not Require a Prescription: Multiphase Observational, Content Analysis, and Product Evaluation Study %A Mackey,Tim Ken %A Jarmusch,Alan K %A Xu,Qing %A Sun,Kunyang %A Lu,Aileen %A Aguirre,Shaden %A Lim,Jessica %A Bhakta,Simran %A Dorrestein,Pieter C %+ Global Health Program, Department of Anthropology, University of California, San Diego, 9500 Gilman Drive, MC: 0505, La Jolla, CA, 92093, United States, 1 9514914161, tkmackey@ucsd.edu %K online pharmacy %K antimicrobial resistance %K drug safety %K cyberpharmacies %K public health %K health website %K online health %K web surveillance %K patient safety %D 2022 %7 23.12.2022 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Antimicrobial resistance is a significant global public health threat. However, the impact of sourcing potentially substandard and falsified antibiotics via the internet remains understudied, particularly in the context of access to and quality of common antibiotics. In response, this study conducted a multifactor quality and safety analysis of antibiotics sold and purchased via online pharmacies that did not require a prescription. Objective: The aim of this paper is to identify and characterize “no prescription” online pharmacies selling 5 common antibiotics and to assess the quality characteristics of samples through controlled test buys. Methods: We first used structured search queries associated with the international nonproprietary names of amoxicillin, azithromycin, amoxicillin and clavulanic acid, cephalexin, and ciprofloxacin to detect and characterize online pharmacies offering the sale of antibiotics without a prescription. Next, we conducted controlled test buys of antibiotics and conducted a visual inspection of packaging and contents for risk evaluation. Antibiotics were then analyzed using untargeted mass spectrometry (MS). MS data were used to determine if the claimed active pharmaceutical ingredient was present, and molecular networking was used to analyze MS data to detect drug analogs as well as possible adulterants and contaminants. Results: A total of 109 unique websites were identified that actively advertised direct-to-consumer sale of antibiotics without a prescription. From these websites, we successfully placed 27 orders, received 11 packages, and collected 1373 antibiotic product samples. Visual inspection resulted in all product packaging consisting of pill packs or blister packs and some concerning indicators of potential poor quality, falsification, and improper dispensing. Though all samples had the presence of stated active pharmaceutical ingredient, molecular networking revealed a number of drug analogs of unknown identity, as well as known impurities and contaminants. Conclusions: Our study used a multifactor approach, including web surveillance, test purchasing, and analytical chemistry, to assess risk factors associated with purchasing antibiotics online. Results provide evidence of possible safety risks, including substandard packaging and shipment, falsification of product information and markings, detection of undeclared chemicals, high variability of quality across samples, and payment for orders being defrauded. Beyond immediate patient safety risks, these falsified and substandard products could exacerbate the ongoing public health threat of antimicrobial resistance by circulating substandard product to patients. %M 36563038 %R 10.2196/41834 %U https://publichealth.jmir.org/2022/12/e41834 %U https://doi.org/10.2196/41834 %U http://www.ncbi.nlm.nih.gov/pubmed/36563038 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 12 %P e39678 %T Using Intervention Mapping to Develop an mHealth Intervention to Support Men Who Have Sex With Men Engaging in Chemsex (Budd): Development and Usability Study %A Herrijgers,Corinne %A Platteau,Tom %A Vandebosch,Heidi %A Poels,Karolien %A Florence,Eric %+ Department of Clinical Sciences, Institute of Tropical Medicine, Nationalestraat 155, Antwerpen, 2000, Belgium, 32 033455656, cherrijgers@itg.be %K mobile health %K chemsex %K intervention mapping %K harm reduction %K men who have sex with men %K intervention %K mobile phone %D 2022 %7 21.12.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Chemsex refers to the intentional use of drugs before or during sex among men who have sex with men (MSM). Engaging in chemsex has been linked to significant negative impacts on physical, psychological, and social well-being. However, no evidence-based support tools have addressed either these harms or the care needs of MSM who engage in chemsex. Objective: The purpose of this paper was to describe the development of a mobile health intervention (named Budd) using the intervention mapping protocol (IMP). Budd aims to support and inform MSM who participate in chemsex, reduce the negative impacts associated with chemsex, and encourage more reasoned participation. Methods: The IMP consists of 6 steps to develop, implement, and evaluate evidence-based health interventions. A needs assessment was carried out between September 2, 2019, and March 31, 2020, by conducting a literature study and in-depth interviews. Change objectives were selected based on these findings, after which theory-based intervention methods were selected. The first version of the intervention was developed in December 2020 and pilot-tested between February 1, 2021, and April 30, 2021. Adjustments were made based on the findings from this study. A separate article will be dedicated to the effectiveness study, conducted between October 15, 2021, and February 24, 2022, and implementation of the intervention. The Budd app went live in April 2022. Results: Budd aims to address individual factors and support chemsex participants in applying harm reduction measures when taking drugs (drug information, drug combination tool, and notebook), preparing for participation in a chemsex session (articles on chemsex, preparation tool, and event-specific checklist), planning sufficient time after a chemsex session to recover (planning tool), seeking support for their chemsex participation (overview of existing local health care and peer support services, reflection, personal statistics, and user testimonials), taking HIV medication or pre-exposure prophylaxis in a timely manner during a chemsex session (preparation tool), and contacting emergency services in case of an emergency and giving first aid to others (emergency information and personal buddy). Conclusions: The IMP proved to be a valuable tool in the planning and development of the Budd app. This study provides researchers and practitioners with valuable information that may help them to set up their own health interventions. International Registered Report Identifier (IRRID): RR1-10.2196/39678 %M 36542451 %R 10.2196/39678 %U https://www.researchprotocols.org/2022/12/e39678 %U https://doi.org/10.2196/39678 %U http://www.ncbi.nlm.nih.gov/pubmed/36542451 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 8 %N 4 %P e42033 %T Effectiveness of Shared Decision-making Training Programs for Health Care Professionals Using Reflexivity Strategies: Secondary Analysis of a Systematic Review %A Diouf,Ndeye Thiab %A Musabyimana,Angèle %A Blanchette,Virginie %A Lépine,Johanie %A Guay-Bélanger,Sabrina %A Tremblay,Marie-Claude %A Dogba,Maman Joyce %A Légaré,France %+ VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et services sociaux de la Capitale-Nationale, 2480 chemin de la canardière, Quebec, QC, G1G 2G1, Canada, 1 418 663 5313, france.legare@fmed.ulaval.ca %K shared decision-making %K reflexivity %K training %K health care professionals %K implementation %D 2022 %7 7.12.2022 %9 Review %J JMIR Med Educ %G English %X Background: Shared decision-making (SDM) leads to better health care processes through collaboration between health care professionals and patients. Training is recognized as a promising intervention to foster SDM by health care professionals. However, the most effective training type is still unclear. Reflexivity is an exercise that leads health care professionals to question their own values to better consider patient values and support patients while least influencing their decisions. Training that uses reflexivity strategies could motivate them to engage in SDM and be more open to diversity. Objective: In this secondary analysis of a 2018 Cochrane review of interventions for improving SDM by health care professionals, we aimed to identify SDM training programs that included reflexivity strategies and were assessed as effective. In addition, we aimed to explore whether further factors can be associated with or enhance their effectiveness. Methods: From the Cochrane review, we first extracted training programs targeting health care professionals. Second, we developed a grid to help identify training programs that used reflexivity strategies. Third, those identified were further categorized according to the type of strategy used. At each step, we identified the proportion of programs that were classified as effective by the Cochrane review (2018) so that we could compare their effectiveness. In addition, we wanted to see whether effectiveness was similar between programs using peer-to-peer group learning and those with an interprofessional orientation. Finally, the Cochrane review selected programs that were evaluated using patient-reported or observer-reported outcome measurements. We examined which of these measurements was most often used in effective training programs. Results: Of the 31 training programs extracted, 24 (77%) were interactive, among which 10 (42%) were considered effective. Of these 31 programs, 7 (23%) were unidirectional, among which 1 (14%) was considered effective. Of the 24 interactive programs, 7 (29%) included reflexivity strategies. Of the 7 training programs with reflexivity strategies, 5 (71%) used a peer-to-peer group learning strategy, among which 3 (60%) were effective; the other 2 (29%) used a self-appraisal individual learning strategy, neither of which was effective. Of the 31 training programs extracted, 5 (16%) programs had an interprofessional orientation, among which 3 (60%) were effective; the remaining 26 (84%) of the 31 programs were without interprofessional orientation, among which 8 (31%) were effective. Finally, 12 (39%) of 31 programs used observer-based measurements, among which more than half (7/12, 58%) were effective. Conclusions: Our study is the first to evaluate the effectiveness of SDM training programs that include reflexivity strategies. Its conclusions open avenues for enriching future SDM training programs with reflexivity strategies. The grid developed to identify training programs that used reflexivity strategies, when further tested and validated, can guide future assessments of reflexivity components in SDM training. %M 36318726 %R 10.2196/42033 %U https://mededu.jmir.org/2022/4/e42033 %U https://doi.org/10.2196/42033 %U http://www.ncbi.nlm.nih.gov/pubmed/36318726 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 12 %P e41219 %T What Patients Find on the Internet When Looking for Information About Percutaneous Coronary Intervention: Multilanguage Cross-sectional Assessment %A Șulea,Cristina M %A Nădășan,Valentin %A Ursachi,Tatiana %A Toboltoc,Paul-Cătălin %A Benedek,Theodora %+ George Emil Palade University of Medicine, Pharmacy, Science, and Technology of Targu Mures, 38 Gheorghe Marinescu Street, Targu Mures, 540142, Romania, 40 265215551, valentin.nadasan@umfst.ro %K percutaneous coronary intervention %K consumer health informatics %K internet %K health education %K health information %K quality %K reliability %K informed decision-making %K credibility %K content quality %K medical information %D 2022 %7 6.12.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: The internet provides general users with wide access to medical information. However, regulating and controlling the quality and reliability of the considerable volume of available data is challenging, thus generating concerns about the consequences of inaccurate health care–related documentation. Several tools have been proposed to increase the transparency and overall trustworthiness of medical information present on the web. Objective: We aimed to analyze and compare the quality and reliability of information about percutaneous coronary intervention on English, German, Hungarian, Romanian, and Russian language websites. Methods: Following a rigorous protocol, 125 websites were selected, 25 for each language sub-sample. The websites were assessed concerning their general characteristics, compliance with a set of eEurope 2002 credibility criteria, and quality of the informational content (namely completeness and accuracy), based on a topic-specific benchmark. Completeness and accuracy were graded independently by 2 evaluators. Scores were reported on a scale from 0 to 10. The 5 language subsamples were compared regarding credibility, completeness, and accuracy. Correlations between credibility scores on the one hand, and completeness and accuracy scores, on the other hand, were tested within each language subsample. Results: The websites’ compliance with credibility criteria was average at best with scores between 3.0 and 6.0. In terms of completeness and accuracy, the website subsets qualified as poor or average, with scores ranging from 2.4 to 4.6 and 3.6 to 5.3, respectively. English language websites scored significantly higher in all 3 aspects, followed by German and Hungarian language websites. Only German language websites showed a significant correlation between credibility and information quality. Conclusions: The quality of websites in English, German, Hungarian, Romanian, and Russian languages about percutaneous coronary intervention was rather inadequate and may raise concerns regarding their impact on informed decision-making. Using credibility criteria as indicators of information quality may not be warranted, as credibility scores were only exceptionally correlated with content quality. The study brings valuable descriptive data on the quality of web-based information regarding percutaneous coronary intervention in multiple languages and raises awareness about the need for responsible use of health-related web resources. %M 36472906 %R 10.2196/41219 %U https://www.jmir.org/2022/12/e41219 %U https://doi.org/10.2196/41219 %U http://www.ncbi.nlm.nih.gov/pubmed/36472906 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 11 %P e38780 %T Acceptability to and Engagement With a Virtual Sickle Cell Trait Education Program (SCTaware): Single-Center Prospective Study %A Beeman,Chase M %A Abrams,Mary Ann %A Zajo,Kristin N %A Stanek,Joseph %A O'Brien,Sarah H %A Chan,Peter %A Shen,Yvette %A McCorkle,Ben %A Johnson,Latrice %A Chisolm,Deena %A Barnard-Kirk,Toyetta %A Mahan,John D %A Martinez-Mendez,Alexandra %A Phillips,Whitney L %A Creary,Susan E %+ Center for Child Health Equity and Outcomes Research, Nationwide Children's Hospital, The Ohio State University, 700 Children’s Dr, Columbus, OH, 43205, United States, 1 614 722 3569, susan.creary@nationwidechildrens.org %K virtual education %K remote education %K internet-based %K health education %K hematology %K patient education %K sickle cell %K genetic %K child %K parenting %K sickle cell trait %K public health education %K acceptability %K Hemoglobin S-trait %K screening %K newborn %K eHealth %K digital health %K telemedicine %K telehealth %D 2022 %7 17.11.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Public health programs are tasked with educating the community on health topics, but it is unclear whether these programs are acceptable to learners. Currently, these programs are delivered via a variety of platforms including in-person, virtually, and over the telephone. Sickle cell trait (SCT) education for parents of children with this trait is one of many education programs provided by the Ohio Department of Health. The novel SCTaware videoconference education program was developed by a research team after central Ohio’s standard program transitioned from in-person to telephone-only education during the COVID-19 pandemic. Objective: Our objectives were to investigate the acceptability of the format and engagement with the SCTaware education and assess parental worry about having a child with SCT before and after receiving SCTaware. Methods: This was a single-center, prospective study of English-speaking parents of children <3 years of age identified to have hemoglobin S trait by newborn screening. Parents who previously received SCT education by telephone, were able to be contacted, and had access to an electronic device capable of videoconferencing were eligible to complete surveys after receiving the virtual SCTaware education program. The SCTaware educator also completed a survey to assess participant engagement. Data were summarized descriptively and a McNemar test was used to compare parental worry before and after receiving SCTaware. Results: In total, 55 participants completed follow-up surveys after receiving standard SCT telephone education and then completing SCTaware. Most (n=51) participants reported that the SCTaware content and visuals were very easy to understand (n=47) and facilitated conversation with the educator (n=42). All of them said the visuals were respectful and trustworthy, helped them understand content better, and that their questions were addressed. Nearly two-thirds (62%, n=34) reported that the pictures appeared very personal and applied to them. The educator noted most participants (n=45) were engaged and asked questions despite having to manage distractions during their education sessions. Many participants (n=33) reported some level of worry following telephone-only education; this was significantly reduced after receiving SCTaware (P<.001). Conclusions: Our results suggest that SCTaware is acceptable and engaging to parents. While telephone education may make SCT education more accessible, these findings suggest that many parents experience significant worry about their child with SCT after these sessions. A study to evaluate SCTaware’s effectiveness at closing parents’ SCT knowledge gaps is ongoing. %M 36394943 %R 10.2196/38780 %U https://formative.jmir.org/2022/11/e38780 %U https://doi.org/10.2196/38780 %U http://www.ncbi.nlm.nih.gov/pubmed/36394943 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 11 %P e38232 %T Use of the Hashtag #DataSavesLives on Twitter: Exploratory and Thematic Analysis %A Teodorowski,Piotr %A Rodgers,Sarah E %A Fleming,Kate %A Frith,Lucy %+ Department of Public Health, Policy & Systems, University of Liverpool, Whelan Building, Liverpool, L69 3GL, United Kingdom, 44 0151 794 5329, p.teodorowski@liverpool.ac.uk %K consumer involvement %K patient participation %K stakeholder participation %K social media %K public engagement %K campaign %K big data %K research %K trust %K tweets %K Twitter %K perception %K usage %K users %K data sharing %K ethics %K community %K hashtag %D 2022 %7 15.11.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: “Data Saves Lives” is a public engagement campaign that highlights the benefits of big data research and aims to establish public trust for this emerging research area. Objective: This study explores how the hashtag #DataSavesLives is used on Twitter. We focused on the period when the UK government and its agencies adopted #DataSavesLives in an attempt to support their plans to set up a new database holding National Health Service (NHS) users’ medical data. Methods: Public tweets published between April 19 and July 15, 2021, using the hashtag #DataSavesLives were saved using NCapture for NVivo 12. All tweets were coded twice. First, each tweet was assigned a positive, neutral, or negative attitude toward the campaign. Second, inductive thematic analysis was conducted. The results of the thematic analysis were mapped under 3 models of public engagement: deficit, dialogue, and participatory. Results: Of 1026 unique tweets available for qualitative analysis, discussion around #DataSavesLives was largely positive (n=716, 69.8%) or neutral (n=276, 26.9%) toward the campaign with limited negative attitudes (n=34, 3.3%). Themes derived from the #DataSavesLives debate included ethical sharing, proactively engaging the public, coproducing knowledge with the public, harnessing potential, and gaining an understanding of big data research. The Twitter discourse was largely positive toward the campaign. The hashtag is predominantly used by similar-minded Twitter users to share information about big data projects and to spread positive messages about big data research when there are public controversies. The hashtag is generally used by organizations and people supportive of big data research. Tweet authors recognize that the public should be proactively engaged and involved in big data projects. The campaign remains UK centric. The results indicate that the communication around big data research is driven by the professional community and remains 1-way as members of the public rarely use the hashtag. Conclusions: The results demonstrate the potential of social media but draws attention to hashtag usage being generally confined to “Twitter bubbles”: groups of similar-minded Twitter users. %M 36378518 %R 10.2196/38232 %U https://www.jmir.org/2022/11/e38232 %U https://doi.org/10.2196/38232 %U http://www.ncbi.nlm.nih.gov/pubmed/36378518 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 11 %P e39571 %T Understanding the Social Mechanism of Cancer Misinformation Spread on YouTube and Lessons Learned: Infodemiological Study %A Yoon,Ho Young %A You,Kyung Han %A Kwon,Jung Hye %A Kim,Jung Sun %A Rha,Sun Young %A Chang,Yoon Jung %A Lee,Sang-Cheol %+ Division of Hemato-Oncology, Department of Internal Medicine, Chungnam National University Sejong Hospital, 20, Bodeum 7-Ro, Sejong-Si, 30099, Republic of Korea, 82 44 995 4781, Kwonjhye.onco@gmail.com %K cancer misinformation %K social media health misinformation %K fenbendazole %K self-administration %K complex contagion %K YouTube %K social media factual information delivery strategy %D 2022 %7 14.11.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: A knowledge gap exists between the list of required actions and the action plan for countering cancer misinformation on social media. Little attention has been paid to a social media strategy for disseminating factual information while also disrupting misinformation on social media networks. Objective: The aim of this study was to, first, identify the spread structure of cancer misinformation on YouTube. We asked the question, “How do YouTube videos play an important role in spreading information about the self-administration of anthelmintics for dogs as a cancer medicine for humans?” Second, the study aimed to suggest an action strategy for disrupting misinformation diffusion on YouTube by exploiting the network logic of YouTube information flow and the recommendation system. We asked the question, “What would be a feasible and effective strategy to block cancer misinformation diffusion on YouTube?” Methods: The study used the YouTube case of the self-administration of anthelmintics for dogs as an alternative cancer medicine in South Korea. We gathered Korean YouTube videos about the self-administration of fenbendazole. Using the YouTube application programming interface for the query “fenbendazole,” 702 videos from 227 channels were compiled. Then, videos with at least 50,000 views, uploaded between September 2019 and September 2020, were selected from the collection, resulting in 90 videos. Finally, 10 recommended videos for each of the 90 videos were compiled, totaling 573 videos. Social network visualization for the recommended videos was used to identify three intervention strategies for disrupting the YouTube misinformation network. Results: The study found evidence of complex contagion by human and machine recommendation systems. By exposing stakeholders to multiple information sources on fenbendazole self-administration and by linking them through a recommendation algorithm, YouTube has become the perfect infrastructure for reinforcing the belief that fenbendazole can cure cancer, despite government warnings about the risks and dangers of self-administration. Conclusions: Health authorities should upload pertinent information through multiple channels and should exploit the existing YouTube recommendation algorithm to disrupt the misinformation network. Considering the viewing habits of patients and caregivers, the direct use of YouTube hospital channels is more effective than the indirect use of YouTube news media channels or government channels that report public announcements and statements. Reinforcing through multiple channels is the key. %M 36374534 %R 10.2196/39571 %U https://www.jmir.org/2022/11/e39571 %U https://doi.org/10.2196/39571 %U http://www.ncbi.nlm.nih.gov/pubmed/36374534 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 4 %P e38088 %T 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 %A Ankersmid,Jet Wies %A Siesling,Sabine %A Strobbe,Luc J A %A Meulepas,Johanna M %A van Riet,Yvonne E A %A Engels,Noel %A Prick,Janine C M %A The,Regina %A Takahashi,Asako %A Velting,Mirjam %A van Uden-Kraan,Cornelia F %A Drossaert,Constance H C %+ Department of Health Technology and Services Research, University of Twente, TechMed Centre, Hallenweg 5, Enschede, 7522 NH, Netherlands, 31 303073906, j.w.ankersmid@utwente.nl %K patient decision aid %K PtDA %K breast cancer %K surveillance %K risk information %K shared decision-making %K SDM %D 2022 %7 14.11.2022 %9 Original Paper %J JMIR Cancer %G English %X 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. %M 36374536 %R 10.2196/38088 %U https://cancer.jmir.org/2022/4/e38088 %U https://doi.org/10.2196/38088 %U http://www.ncbi.nlm.nih.gov/pubmed/36374536 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 8 %N 4 %P e39059 %T Emoji Education: How Students Can Help Increase Health Awareness by Making Emojis %A Marzouk,Sammer %A He,Shuhan %A Lee,Jarone %+ Massachusetts General Hospital, 55 Fruit Street, Boston, MA, 02114, United States, 1 617 726 2760, jarone.lee@mgh.harvard.edu %K emoji %K medical education %K technology, education %K medical students %K creativity %K student %K health awareness %K health %K awareness %K medical %K society %K innovation %K communication %K medical communication %K electronic %K artistic %K representation %D 2022 %7 11.11.2022 %9 Viewpoint %J JMIR Med Educ %G English %X Emojis can improve health communication, especially when incorporating emojis into traditionally word-only texts. Beyond improving communication, emojis also offer greater access to health care, especially for vulnerable and marginalized populations with limited health literacy. A recent study found that 94% of patients with limited health literacy preferred health reports with emojis. Moreover, health officials are considering adding emojis to cardiopulmonary resuscitation guidelines and public health guidelines for handwashing. As the world evolves with new technology and new methods of communication, we must also evolve the language and method we use to communicate health information to patients. In this viewpoint, we aim to discuss the methods health care professionals can use to develop novel communication methods using emojis and the benefits of their incorporation into health care communication. %M 36367758 %R 10.2196/39059 %U https://mededu.jmir.org/2022/4/e39059 %U https://doi.org/10.2196/39059 %U http://www.ncbi.nlm.nih.gov/pubmed/36367758 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 10 %P e35962 %T Evaluation of a Web-Based Culturally Sensitive Educational Video to Facilitate Informed Cervical Cancer Screening Decisions Among Turkish- and Moroccan-Dutch Women Aged 30 to 60 Years: Randomized Intervention Study %A Hamdiui,Nora %A Stein,Mart L %A van Steenbergen,Jim %A Crutzen,Rik %A Bouman,Martine %A Khan,Abresham %A Çetin,Miyase N %A Timen,Aura %A van den Muijsenbergh,Maria %+ National Coordination Centre for Communicable Disease Control, Centre for Infectious Disease Control, National Institute for Public Health and the Environment, Postbus 1, Bilthoven, 3720 BA, Netherlands, 31 088 689 7000, nora.hamdiui@rivm.nl %K cervical cancer %K screening %K informed decision-making %K web-based intervention %K culturally sensitive educational video %K Turkish %K Moroccan %K The Netherlands %D 2022 %7 26.10.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: In the Netherlands, since 1996, a national cervical cancer (CC) screening program has been implemented for women aged 30 to 60 years. Regional screening organizations send an invitation letter and information brochure in Dutch to the home addresses of targeted women every 5 years. Although this screening is free of charge, Turkish- and Moroccan-Dutch women, especially, show low screening participation and limited informed decision-making (IDM). As Turkish- and Moroccan-Dutch women indicated their need for information on the practical, emotional, cultural, and religious aspects of CC screening, we developed a culturally sensitive educational video (CSEV) as an addition to the current information brochure. Objective: In this study, we aimed to evaluate the added effect of the CSEV on IDM regarding CC screening participation among Turkish and Moroccan women aged 30 to 60 years in the Netherlands through a randomized intervention study. Methods: Initial respondents were recruited via several social media platforms and invited to complete a web-based questionnaire. Following respondent-driven sampling, respondents were asked to recruit a number of peers from their social networks to complete the same questionnaire. Respondents were randomly assigned to the control (current information brochure) or intervention condition (brochure and CSEV). We measured respondents’ knowledge and attitude regarding CC screening and their intention to participate in the next CC screening round before and after the control or intervention condition. We evaluated the added effect of the CSEV (above the brochure) on their knowledge, attitude, intention, and IDM using intention-to-treat analyses. Results: The final sample (n=1564) included 686 (43.86%) Turkish and 878 (56.14%) Moroccan-Dutch women. Of this sample, 50.7% (793/1564) were randomized to the control group (350/793, 44.1% Turkish and 443/793, 55.9% Moroccan) and 49.3% (771/1564) to the intervention group (336/771, 43.6% Turkish and 435/771, 56.4% Moroccan). Among the Turkish-Dutch women, 33.1% (116/350) of the control respondents and 40.5% (136/336) of the intervention respondents consulted the brochure (not statistically significant). Among Moroccan-Dutch women, these percentages were 28.2% (125/443) and 37.9% (165/435), respectively (P=.003). Of all intervention respondents, 96.1% (323/336; Turkish) and 84.4% (367/435; Moroccan) consulted the CSEV. The CSEV resulted in more positive screening attitudes among Moroccan-Dutch women than the brochure (323/435, 74.3% vs 303/443, 68.4%; P=.07). Women, who had never participated in CC screening before, showed significantly more often a positive attitude toward CC screening compared with the control group (P=.01). Conclusions: Our short and easily implementable CSEV resulted in more positive screening attitudes, especially in Moroccan-Dutch women. As the CSEV was also watched far more often than the current brochure was read, this intervention can contribute to better reach and more informed CC screening decisions among Turkish- and Moroccan-Dutch women. Trial Registration: International Clinical Trial Registry Platform NL8453; https://tinyurl.com/2dvbjxvc %M 36287585 %R 10.2196/35962 %U https://www.jmir.org/2022/10/e35962 %U https://doi.org/10.2196/35962 %U http://www.ncbi.nlm.nih.gov/pubmed/36287585 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 10 %P e40018 %T Shared Decision-Making for Drug-Drug Interactions: Formative Evaluation of an Anticoagulant Drug Interaction %A Gomez Lumbreras,Ainhoa %A Reese,Thomas J %A Del Fiol,Guilherme %A Tan,Malinda S %A Butler,Jorie M %A Hurwitz,Jason T %A Brown,Mary %A Kawamoto,Kensaku %A Thiess,Henrik %A Wright,Maria %A Malone,Daniel C %+ Department of Pharmacotherapy, Skaggs College of Pharmacy, University of Utah, 30 S 2000 East, Room 4922, Salt Lake City, UT, 84112, United States, 1 801 581 8054, dan.malone@utah.edu %K decision making, shared %K decision support systems, clinical %K decision making %K decision support %K user-centered design %K patient-centered care %K risk management %K drug interaction %K pharmacotherapy %K pharmacy %K pharmaceutical %K warfarin %K unified theory of acceptance and use of technology %K UTAUT %K NSAID %K anti-inflammatory %K non-steroidal %D 2022 %7 19.10.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Warnings about drug-drug interactions (DDIs) between warfarin and nonsteroidal anti-inflammatory drugs (NSAIDs) within electronic health records indicate potential harm but fail to account for contextual factors and preferences. We developed a tool called DDInteract to enhance and support shared decision-making (SDM) between patients and physicians when both warfarin and NSAIDs are used concurrently. DDInteract was designed to be integrated into electronic health records using interoperability standards. Objective: The purpose of this study was to conduct a formative evaluation of a DDInteract that incorporates patient and product contextual factors to estimate the risk of bleeding. Methods: A randomized formative evaluation was conducted to compare DDInteract to usual care (UC) using physician-patient dyads. Using case vignettes, physicians and patients on warfarin participated in simulated virtual clinical encounters where they discussed the use of taking ibuprofen and warfarin concurrently and determined an appropriate therapeutic plan based on the patient’s individualized risk. Dyads were randomized to either DDInteract or UC. Participants completed a postsession interview and survey of the SDM process. This included the 9-item Shared Decision-Making Questionnaire (SDM-Q-9), tool usability and workload National Aeronautics and Space Administration (NASA) Task Load Index, Unified Theory of Acceptance and Use of Technology (UTAUT), Perceived Behavioral Control (PBC) scale, System Usability Scale (SUS), and Decision Conflict Scale (DCS). They also were interviewed after the session to obtain perceptions on DDInteract and UC resources for DDIs. Results: Twelve dyad encounters were performed using virtual software. Most (n=11, 91.7%) patients were over 50 years of age, and 9 (75%) had been taking warfarin for more than 2 years (75%). Regarding scores on the SDM-Q-9, participants rated DDInteract higher than UC for questions pertaining to helping patients clarify the decision (P=.03), involving patients in the decision (P=.01), displaying treatment options (P<.001), identifying advantages and disadvantages (P=.01), and facilitating patient understanding (P=.01) and discussion of preferences (P=.01). Five of the 8 UTAUT constructs showed differences between the 2 groups, favoring DDInteract (P<.05). Usability ratings from the SUS were significantly higher (P<.05) for physicians using DDInteract compared to those in the UC group but showed no differences from the patient’s perspective. No differences in patient responses were observed between groups using the DCS. During the session debrief, physicians indicated little concern for the additional time or workload entailed by DDInteract use. Both clinicians and patients indicated that the tool was beneficial in simulated encounters to understand and mitigate the risk of harm from this DDI. Conclusions: Overall, DDInteract may improve encounters where there is a risk of bleeding due to a potential drug-drug interaction involving anticoagulants. Participants rated DDInteract as logical and useful for enhancing SDM. They reported that they would be willing to use the tool for an interaction involving warfarin and NSAIDs. %M 36260377 %R 10.2196/40018 %U https://formative.jmir.org/2022/10/e40018 %U https://doi.org/10.2196/40018 %U http://www.ncbi.nlm.nih.gov/pubmed/36260377 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 4 %P e41481 %T From Testers to Cocreators—the Value of and Approaches to Successful Patient Engagement in the Development of eHealth Solutions: Qualitative Expert Interview Study %A Jacob,Christine %A Bourke,Steven %A Heuss,Sabina %+ FHNW - University of Applied Sciences Northwestern Switzerland, Bahnhofstrasse 6, Windisch, 5210, Switzerland, 41 562027700, christine.k.jacob@gmail.com %K telemedicine %K smartphone %K mobile phone %K electronic health record %K public health practice %K technology %K perception %K health education %K mobile health %K mHealth %K telehealth %K eHealth %K patients %K patient engagement %K patient voice %K patient empowerment %D 2022 %7 6.10.2022 %9 Original Paper %J JMIR Hum Factors %G English %X 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. %M 36102548 %R 10.2196/41481 %U https://humanfactors.jmir.org/2022/4/e41481 %U https://doi.org/10.2196/41481 %U http://www.ncbi.nlm.nih.gov/pubmed/36102548 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 10 %P e32666 %T Bolstering the Business Case for Adoption of Shared Decision-Making Systems in Primary Care: Randomized Controlled Trial %A Sperl-Hillen,JoAnn M %A Anderson,Jeffrey P %A Margolis,Karen L %A Rossom,Rebecca C %A Kopski,Kristen M %A Averbeck,Beth M %A Rosner,Jeanine A %A Ekstrom,Heidi L %A Dehmer,Steven P %A O’Connor,Patrick J %+ Research Department, HealthPartners Center for Chronic Care Innovation, 8170 33rd Ave S, Bloomington, MN, 55425, United States, 1 952 967 5009, JoAnn.M.SperlHillen@HealthPartners.Com %K clinical decision support %K primary care %K ICD-10 diagnostic coding %K CPT levels of service %K shared decision-making %D 2022 %7 6.10.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Limited budgets may often constrain the ability of health care delivery systems to adopt shared decision-making (SDM) systems designed to improve clinical encounters with patients and quality of care. Objective: This study aimed to assess the impact of an SDM system shown to improve diabetes and cardiovascular patient outcomes on factors affecting revenue generation in primary care clinics. Methods: As part of a large multisite clinic randomized controlled trial (RCT), we explored the differences in 1 care system between clinics randomized to use an SDM intervention (n=8) versus control clinics (n=9) regarding the (1) likelihood of diagnostic coding for cardiometabolic conditions using the 10th Revision of the International Classification of Diseases (ICD-10) and (2) current procedural terminology (CPT) billing codes. Results: At all 24,138 encounters with care gaps targeted by the SDM system, the proportion assigned high-complexity CPT codes for level of service 5 was significantly higher at the intervention clinics (6.1%) compared to that in the control clinics (2.9%), with P<.001 and adjusted odds ratio (OR) 1.64 (95% CI 1.02-2.61). This was consistently observed across the following specific care gaps: diabetes with glycated hemoglobin A1c (HbA1c)>8% (n=8463), 7.2% vs 3.4%, P<.001, and adjusted OR 1.93 (95% CI 1.01-3.67); blood pressure above goal (n=8515), 6.5% vs 3.7%, P<.001, and adjusted OR 1.42 (95% CI 0.72-2.79); suboptimal statin management (n=17,765), 5.8% vs 3%, P<.001, and adjusted OR 1.41 (95% CI 0.76-2.61); tobacco dependency (n=7449), 7.5% vs. 3.4%, P<.001, and adjusted OR 2.14 (95% CI 1.31-3.51); BMI >30 kg/m2 (n=19,838), 6.2% vs 2.9%, P<.001, and adjusted OR 1.45 (95% CI 0.75-2.8). Compared to control clinics, intervention clinics assigned ICD-10 diagnosis codes more often for observed cardiometabolic conditions with care gaps, although the difference did not reach statistical significance. Conclusions: In this randomized study, use of a clinically effective SDM system at encounters with care gaps significantly increased the proportion of encounters assigned high-complexity (level 5) CPT codes, and it was associated with a nonsignificant increase in assigning ICD-10 codes for observed cardiometabolic conditions. Trial Registration: ClinicalTrials.gov NCT 02451670; https://clinicaltrials.gov/ct2/show/NCT 02451670 %M 36201392 %R 10.2196/32666 %U https://formative.jmir.org/2022/10/e32666 %U https://doi.org/10.2196/32666 %U http://www.ncbi.nlm.nih.gov/pubmed/36201392 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 5 %N 3 %P e39386 %T Shared Decision-Making Training for Home Care Teams to Engage Frail Older Adults and Caregivers in Housing Decisions: Stepped-Wedge Cluster Randomized Trial %A Adisso,Évèhouénou Lionel %A Taljaard,Monica %A Stacey,Dawn %A Brière,Nathalie %A Zomahoun,Hervé Tchala Vignon %A Durand,Pierre Jacob %A Rivest,Louis-Paul %A Légaré,France %+ Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation, 2525 Chemin de la Canardière bureau A-3421, Québec, QC, G1J0A4, Canada, 1 4188219481, france.legare@fmed.ulaval.ca %K shared decision-making %K home care %K nursing homes %K patient engagement %D 2022 %7 20.9.2022 %9 Original Paper %J JMIR Aging %G English %X Background: Frail older adults and caregivers need support from their home care teams in making difficult housing decisions, such as whether to remain at home, with or without assistance, or move into residential care. However, home care teams are often understaffed and busy, and shared decision-making training is costly. Nevertheless, overall awareness of shared decision-making is increasing. We hypothesized that distributing a decision aid could be sufficient for providing decision support without the addition of shared decision-making training for home care teams. Objective: We evaluated the effectiveness of adding web-based training and workshops for care teams in interprofessional shared decision-making to passive dissemination of a decision guide on the proportion of frail older adults or caregivers of cognitively-impaired frail older adults reporting active roles in housing decision-making. Methods: We conducted a stepped-wedge cluster randomized trial with home care teams in 9 health centers in Quebec, Canada. Participants were frail older adults or caregivers of cognitively impaired frail older adults facing housing decisions and receiving care from the home care team at one of the participating health centers. The intervention consisted of a 1.5-hour web-based tutorial for the home care teams plus a 3.5-hour interactive workshop in interprofessional shared decision-making using a decision guide that was designed to support frail older adults and caregivers in making housing decisions. The control was passive dissemination of the decision guide. The primary outcome was an active role in decision-making among frail older adults and caregivers, measured using the Control Preferences Scale. Secondary outcomes included decisional conflict and perceptions of how much care teams involved frail older adults and caregivers in decision-making. We performed an intention-to-treat analysis. Results: A total of 311 frail older adults were included in the analysis, including 208 (66.9%) women, with a mean age of 81.2 (SD 7.5) years. Among 339 caregivers of cognitively-impaired frail older adults, 239 (70.5%) were female and their mean age was 66.4 (SD 11.7) years. The intervention increased the proportion of frail older adults reporting an active role in decision-making by 3.3% (95% CI –5.8% to 12.4%, P=.47) and the proportion of caregivers of cognitively-impaired frail older adults by 6.1% (95% CI -11.2% to 23.4%, P=.49). There was no significant impact on the secondary outcomes. However, the mean score for the frail older adults’ perception of how much health professionals involved them in decision-making increased by 5.4 (95% CI −0.6 to 11.4, P=.07) and the proportion of caregivers who reported decisional conflict decreased by 7.5% (95% CI −16.5% to 1.6%, P=.10). Conclusions: Although it slightly reduced decisional conflict for caregivers, shared decision-making training did not equip home care teams significantly better than provision of a decision aid for involving frail older adults and their caregivers in decision-making. Trial Registration: ClinicalTrials.gov NCT02592525; https://clinicaltrials.gov/show/NCT02592525 %M 35759791 %R 10.2196/39386 %U https://aging.jmir.org/2022/3/e39386 %U https://doi.org/10.2196/39386 %U http://www.ncbi.nlm.nih.gov/pubmed/35759791 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 3 %P e37793 %T Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study %A Raj,Minakshi %A Ryan,Kerry %A Nong,Paige %A Calhoun,Karen %A Trinidad,M Grace %A De Vries,Raymond %A Creary,Melissa %A Spector-Bagdady,Kayte %A Kardia,Sharon L R %A Platt,Jodyn %+ Department of Kinesiology and Community Health, University of Illinois at Urbana Champaign, 1206 S Fourth Street, Champaign, IL, 61820, United States, 1 315 559 3112, mraj@illinois.edu %K public deliberation %K data sharing %K health information exchange %K patient engagement %K health information %K sharing %K cancer %K oncology %K precision oncology %K information %K policy %K personalized medicine %K public preference %D 2022 %7 16.9.2022 %9 Original Paper %J JMIR Cancer %G English %X 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. %M 36112409 %R 10.2196/37793 %U https://cancer.jmir.org/2022/3/e37793 %U https://doi.org/10.2196/37793 %U http://www.ncbi.nlm.nih.gov/pubmed/36112409 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 3 %P e38297 %T Social Media Perceptions and Internet Verification Skills Associated With Human Papillomavirus Vaccine Decision-Making Among Parents of Children and Adolescents: Cross-sectional Survey %A Thompson,Erika L %A Preston,Sharice M %A Francis,Jenny K R %A Rodriguez,Serena A %A Pruitt,Sandi L %A Blackwell,James-Michael %A Tiro,Jasmin A %+ Department of Biostatistics & Epidemiology, School of Public Health, University of North Texas Health Science Center, 3500 Camp Bowie Blvd, Fort Worth, TX, 76107, United States, 1 817 735 5162, Erika.Thompson@unthsc.edu %K HPV vaccination %K human papillomavirus %K social media %K decision-making %K vaccination %K teens %K adolescents %K parent %K USA %K United States %K misinformation %K internet %K survey %K unvaccinated %K child %K online %K health %K literacy %K decision %K health care %K decision %K teen %K vaccine %D 2022 %7 14.9.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Human Papillomavirus (HPV) vaccination is recommended for children aged 11-12 years in the United States. One factor that may contribute to low national HPV vaccine uptake is parental exposure to misinformation on social media. Objective: This study aimed to examine the association between parents’ perceptions of the HPV vaccine information on social media and internet verification strategies used with the HPV vaccine decision-making stage for their child. Methods: Parents of children and adolescents aged 9-17 years were recruited for a cross-sectional survey in North Texas (n=1192) and classified into 3 groups: children and adolescents who (1) were vaccinated, (2) unvaccinated and did not want the vaccine, and (3) unvaccinated and wanted the vaccine. Multinomial logistic regression models were estimated to identify factors associated with the HPV vaccine decision-making stage with children and adolescents who were vaccinated as the referent group. Results: Of the 1192 respondents, 44.7% (n=533) had an HPV-vaccinated child, 38.8% (n=463) had an unvaccinated child and did not want the vaccine, and 16.4% (n=196) had an unvaccinated child and wanted the vaccine. Respondents were less likely to be “undecided/not wanting the vaccine” if they agreed that HPV information on social media is credible (adjusted odds ratio [aOR] 0.40, 95% CI 0.26-0.60; P=.001), disagreed that social media makes them question the HPV vaccine (aOR 0.22, 95% CI 0.15-0.33; P<.001), or had a higher internet verification score (aOR 0.74, 95% CI 0.62-0.88; P<.001). Conclusions: Interventions that promote web-based health literacy skills are needed so parents can protect their families from misinformation and make informed health care decisions. %M 36103216 %R 10.2196/38297 %U https://pediatrics.jmir.org/2022/3/e38297 %U https://doi.org/10.2196/38297 %U http://www.ncbi.nlm.nih.gov/pubmed/36103216 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 9 %P e35646 %T A Patient Decision Aid (i.ARTs) to Facilitate Women’s Choice Between Oral and Long-Acting Injectable Antiretroviral Treatment for HIV: Protocols for its Development and Randomized Controlled Pilot Trial %A Philbin,Morgan M %A McCrimmon,Tara %A Shaffer,Victoria A %A Kerrigan,Deanna %A Pereyra,Margaret %A Cohen,Mardge H %A Sosanya,Oluwakemi %A Sheth,Anandi N %A Adimora,Adaora A %A Topper,Elizabeth F %A Rana,Aadia %A Tamraz,Bani %A Goparaju,Lakshmi %A Wilson,Tracey E %A Alcaide,Maria %+ Department of Sociomedical Sciences, Columbia University Mailman School of Public Health, 722 West 168th Street, New York, NY, 10032, United States, 1 (212) 342 5127, mp3243@cumc.columbia.edu %K patient decision aid %K HIV treatment %K oral ART %K long-acting injectable ART %K study protocol %K women’s health %D 2022 %7 13.9.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Many women with HIV (WWH) have suboptimal adherence to oral antiretroviral therapy (ART) due to multilevel barriers to HIV care access and retention. A long-acting injectable (LAI) version of ART was approved by the US Food and Drug Administration in January 2021 and has the potential to overcome many of these barriers by eliminating the need for daily pill taking. However, it may not be optimal for all WWH. It is critical to develop tools that facilitate patient-provider shared decision making about oral versus LAI ART modalities to promote women’s adherence and long-term HIV outcomes. Objective: This study will develop and pilot test a web-based patient decision aid called i.ART+support (i.ARTs). This decision aid aims to support shared decision making between WWH and their providers, and help women choose between oral and LAI HIV treatment. Methods: The study will occur in 3 phases. In phase 1, we will utilize a mixed methods approach to collect data from WWH and medical and social service providers to inform i.ARTs content. During phase 2, we will conduct focus groups with WWH and providers to refine i.ARTs content and develop the web-based decision aid. In phase 3, i.ARTs will be tested in a randomized controlled trial with 180 women in Miami, Florida, and assessed for feasibility, usability, and acceptability, as well as to evaluate the associations between receiving i.ARTs and viral suppression, ART pharmacy refills, and clinic attendance. Results: This study was funded in March 2021. Columbia University’s IRB approved the study protocols (approval number IRB-AAAT5314). Protocols for phase 1 interviews have been developed and interviews with service providers started in September 2021. We will apply for Clinicaltrials.gov registration prior to phase 3, which is when our first participant will be enrolled in the randomized controlled trial. This is anticipated to occur in April 2023. Conclusions: This study is the first to develop a web-based patient decision aid to support WWH choices between oral and LAI ART. Its strengths include the incorporation of both patient and provider perspectives, a mixed methods design, and implementation in a real-world clinical setting. International Registered Report Identifier (IRRID): DERR1-10.2196/35646 %M 36099004 %R 10.2196/35646 %U https://www.researchprotocols.org/2022/9/e35646 %U https://doi.org/10.2196/35646 %U http://www.ncbi.nlm.nih.gov/pubmed/36099004 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 3 %P e35381 %T User Experience of a Computer-Based Decision Aid for Prenatal Trisomy Screening: Mixed Methods Explanatory Study %A Agbadje,Titilayo Tatiana %A Pilon,Chantale %A Bérubé,Pierre %A Forest,Jean-Claude %A Rousseau,François %A Rahimi,Samira Abbasgholizadeh %A Giguère,Yves %A Légaré,France %+ VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et services sociaux de la Capitale-Nationale, 2480 Chemin de la Canardière, Quebec, QC, G1G 2G1, Canada, 1 418 663 5313, France.Legare@mfa.ulaval.ca %K shared decision-making %K computer-based decision aid %K prenatal screening %K trisomy %K Down syndrome %K mixed methods %D 2022 %7 6.9.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Mobile health tools can support shared decision-making. We developed a computer-based decision aid (DA) to help pregnant women and their partners make informed, value-congruent decisions regarding prenatal screening for trisomy. Objective: This study aims to assess the usability and usefulness of computer-based DA among pregnant women, clinicians, and policy makers. Methods: For this mixed methods sequential explanatory study, we planned to recruit a convenience sample of 45 pregnant women, 45 clinicians from 3 clinical sites, and 15 policy makers. Eligible women were aged >18 years and >16 weeks pregnant or had recently given birth. Eligible clinicians and policy makers were involved in prenatal care. We asked the participants to navigate a computer-based DA. We asked the women about the usefulness of the DA and their self-confidence in decision-making. We asked all participants about usability, quality, acceptability, satisfaction with the content of the DA, and collected sociodemographic data. We explored participants’ reactions to the computer-based DA and solicited suggestions. Our interview guide was based on the Mobile App Rating Scale. We performed descriptive analyses of the quantitative data and thematic deductive and inductive analyses of the qualitative data for each participant category. Results: A total of 45 pregnant women, 14 clinicians, and 8 policy makers participated. Most pregnant women were aged between 25 and 34 years (34/45, 75%) and White (42/45, 94%). Most clinicians were aged between 35 and 44 years (5/14, 36%) and women (11/14, 79%), and all were White (14/14, 100%); the largest proportion of policy makers was aged between 45 and 54 years (4/8, 50%), women (5/8, 62%), and White (8/8, 100%). The mean usefulness score for preparing for decision-making for women was 80/100 (SD 13), and the mean self-efficacy score was 88/100 (SD 11). The mean usability score was 84/100 (SD 14) for pregnant women, 77/100 (SD 14) for clinicians, and 79/100 (SD 23) for policy makers. The mean global score for quality was 80/100 (SD 9) for pregnant women, 72/100 (SD 12) for clinicians, and 80/100 (SD 9) for policy makers. Regarding acceptability, participants found the amount of information just right (52/66, 79%), balanced (58/66, 88%), useful (38/66, 58%), and sufficient (50/66, 76%). The mean satisfaction score with the content was 84/100 (SD 13) for pregnant women, 73/100 (SD 16) for clinicians, and 73/100 (SD 20) for policy makers. Participants thought the DA could be more engaging (eg, more customizable) and suggested strategies for implementation, such as incorporating it into clinical guidelines. Conclusions: Pregnant women, clinicians, and policy makers found the DA usable and useful. The next steps are to incorporate user suggestions for improving engagement and implementing the computer-based DA in clinical practice. %M 35896164 %R 10.2196/35381 %U https://pediatrics.jmir.org/2022/3/e35381 %U https://doi.org/10.2196/35381 %U http://www.ncbi.nlm.nih.gov/pubmed/35896164 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 8 %P e35072 %T The Human Need for Equilibrium: Qualitative Study on the Ingenuity, Technical Competency, and Changing Strategies of People With Dementia Seeking Health Information %A Dixon,Emma %A Anderson,Jesse %A Blackwelder,Diana C %A Radnofsky,Mary L %A Lazar,Amanda %+ College of Information Studies, University of Maryland, 4130 Campus Dr 4th floor, College Park, MD, 20742, United States, 1 843 609 7249, eedixon@umd.edu %K dementia %K health information behavior %K action research %K equilibrium %K postdiagnostic experience %K mobile phone %D 2022 %7 11.8.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Prior research on health information behaviors of people with dementia has primarily focused on examining the types of information exchanged by people with dementia using various web-based platforms. A previous study investigated the information behaviors of people with dementia within a month of their diagnosis. There is an empirical gap in the literature regarding the evolution of health information needs and behaviors of people with dementia as their condition progresses. Objective: Our work primarily investigated the information behaviors of people with dementia who have been living with the condition for several (4 to 26) years. We also aimed to identify their motivations for changing their information behaviors over time. Our primary research questions were as follows: how do people with dementia get informed about their condition, and why do people with dementia seek information about their condition? Methods: We adopted an action research approach by including 2 people with dementia as members of our research team. Collaboratively, we conducted 16 remote 1-hour contextual inquiry sessions with people living with mild to moderate dementia. During the study sessions, the first 40 minutes included semistructured interviews with participants concerning their information behaviors, followed by a 20-minute demonstration of their information-seeking strategies. Data from these interviews were analyzed using a constructivist grounded theory approach. Results: Participants described their information needs in terms of managing the disrupted physiological, emotional, and social aspects of their lives following a diagnosis of dementia. They used various information behaviors, including active search, ongoing search, monitoring, proxy search, information avoidance, and selective exposure. These information behaviors were not stagnant; however, they were adapted to accommodate the changing circumstances of their dementia and their lives as they worked to re-establish equilibrium to continue to engage in life while living with a degenerative neurological condition. Conclusions: Our research revealed the motivations, changing abilities, and chosen strategies of people with dementia in their search for information as their condition evolves. This knowledge can be used to develop and improve person-centered information and support services for people with dementia so that they can more easily re-establish equilibrium and continue to engage in life. %M 35969426 %R 10.2196/35072 %U https://www.jmir.org/2022/8/e35072 %U https://doi.org/10.2196/35072 %U http://www.ncbi.nlm.nih.gov/pubmed/35969426 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 10 %N 8 %P e36199 %T Application of Artificial Intelligence in Shared Decision Making: Scoping Review %A Abbasgholizadeh Rahimi,Samira %A Cwintal,Michelle %A Huang,Yuhui %A Ghadiri,Pooria %A Grad,Roland %A Poenaru,Dan %A Gore,Genevieve %A Zomahoun,Hervé Tchala Vignon %A Légaré,France %A Pluye,Pierre %+ Department of Family Medicine, McGill University, 5858 Cote-des-Neiges Rd, Suite 300, Montreal, QC, H3S 1Z1, Canada, 1 (514)399 9218, samira.rahimi@mcgill.ca %K artificial intelligence %K machine learning %K shared decision making %K patient-centered care %K scoping review %D 2022 %7 9.8.2022 %9 Review %J JMIR Med Inform %G English %X Background: Artificial intelligence (AI) has shown promising results in various fields of medicine. It has the potential to facilitate shared decision making (SDM). However, there is no comprehensive mapping of how AI may be used for SDM. Objective: We aimed to identify and evaluate published studies that have tested or implemented AI to facilitate SDM. Methods: We performed a scoping review informed by the methodological framework proposed by Levac et al, modifications to the original Arksey and O'Malley framework of a scoping review, and the Joanna Briggs Institute scoping review framework. We reported our results based on the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) reporting guideline. At the identification stage, an information specialist performed a comprehensive search of 6 electronic databases from their inception to May 2021. The inclusion criteria were: all populations; all AI interventions that were used to facilitate SDM, and if the AI intervention was not used for the decision-making point in SDM, it was excluded; any outcome related to patients, health care providers, or health care systems; studies in any health care setting, only studies published in the English language, and all study types. Overall, 2 reviewers independently performed the study selection process and extracted data. Any disagreements were resolved by a third reviewer. A descriptive analysis was performed. Results: The search process yielded 1445 records. After removing duplicates, 894 documents were screened, and 6 peer-reviewed publications met our inclusion criteria. Overall, 2 of them were conducted in North America, 2 in Europe, 1 in Australia, and 1 in Asia. Most articles were published after 2017. Overall, 3 articles focused on primary care, and 3 articles focused on secondary care. All studies used machine learning methods. Moreover, 3 articles included health care providers in the validation stage of the AI intervention, and 1 article included both health care providers and patients in clinical validation, but none of the articles included health care providers or patients in the design and development of the AI intervention. All used AI to support SDM by providing clinical recommendations or predictions. Conclusions: Evidence of the use of AI in SDM is in its infancy. We found AI supporting SDM in similar ways across the included articles. We observed a lack of emphasis on patients’ values and preferences, as well as poor reporting of AI interventions, resulting in a lack of clarity about different aspects. Little effort was made to address the topics of explainability of AI interventions and to include end-users in the design and development of the interventions. Further efforts are required to strengthen and standardize the use of AI in different steps of SDM and to evaluate its impact on various decisions, populations, and settings. %M 35943793 %R 10.2196/36199 %U https://medinform.jmir.org/2022/8/e36199 %U https://doi.org/10.2196/36199 %U http://www.ncbi.nlm.nih.gov/pubmed/35943793 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 14 %N 1 %P e35798 %T Moving to Personalized Medicine Requires Personalized Health Plans %A Powell,Adam %A Dolan,Paul %+ Payer+Provider Syndicate, 20 Oakland Ave, Newton, MA, 02466, United States, 1 617 939 9168, powell@payerprovider.com %K quality-adjusted life years %K health insurance %K personalized outcomes %K patient preferences %K cost-effectiveness %K managed care %D 2022 %7 4.8.2022 %9 Viewpoint %J J Particip Med %G English %X When individuals, families, and employers select health plans in the United States, they are typically only shown the financial structure of the plans and their provider networks. This variation in financial structure can lead patients to have health plans aligned with their financial needs, but not with their underlying nonfinancial preferences. Compounding the challenge is the fact that managed care organizations have historically used a combination of population-level budget impact models, cost-effectiveness analyses, medical necessity criteria, and current medical consensus to make coverage decisions. This approach to creating and presenting health plan options does not consider heterogeneity in patient and family preferences and values, as it treats populations as uniform. Similarly, it does not consider that there are some situations in which patients are price-insensitive. We seek to highlight the challenges posed by presenting health plans to patients in strictly financial terms, and to call for more consideration of nonfinancial patient preferences in the health plan design and selection process. %M 35925669 %R 10.2196/35798 %U https://jopm.jmir.org/2022/1/e35798 %U https://doi.org/10.2196/35798 %U http://www.ncbi.nlm.nih.gov/pubmed/35925669 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 8 %P e39288 %T Effectiveness of Artificial Intelligence–Assisted Decision-making to Improve Vulnerable Women’s Participation in Cervical Cancer Screening in France: Protocol for a Cluster Randomized Controlled Trial (AppDate-You) %A Selmouni,Farida %A Guy,Marine %A Muwonge,Richard %A Nassiri,Abdelhak %A Lucas,Eric %A Basu,Partha %A Sauvaget,Catherine %+ Early Detection, Prevention & Infections Branch, International Agency for Research on Cancer, 150, Cours Albert Thomas, Lyon, 69372, France, 33 0472738499, selmounif@iarc.fr %K cervical cancer %K screening %K chatbot %K decision aid %K artificial intelligence %K cluster randomized controlled trial %D 2022 %7 2.8.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: The French organized population-based cervical cancer screening (CCS) program transitioned from a cytology-based to a human papillomavirus (HPV)–based screening strategy in August 2020. HPV testing is offered every 5 years, starting at the age of 30 years. In the new program, women are invited to undergo an HPV test at a gynecologist’s, primary care physician’s, or midwife’s office, a private clinic or health center, family planning center, or hospital. HPV self-sampling (HPVss) was also made available as an additional approach. However, French studies reported that less than 20% of noncompliant women performed vaginal self-sampling when a kit was sent to their home. Women with lower income and educational levels participate less in CCS. Lack of information about the disease and the benefits of CCS were reported as one of the major barriers among noncompliant women. This barrier could be addressed by overcoming disparities in HPV- and cervical cancer–related knowledge and perceptions about CCS. Objective: This study aimed to assess the effectiveness of a chatbot-based decision aid to improve women’s participation in the HPVss detection-based CCS care pathway. Methods: AppDate-You is a 2-arm cluster randomized controlled trial (cRCT) nested within the French organized CCS program. Eligible women are those aged 30-65 years who have not been screened for CC for more than 4 years and live in the disadvantaged clusters in the Occitanie Region, France. In total, 32 clusters will be allocated to the intervention and control arms, 16 in each arm (approximately 4000 women). Eligible women living in randomly selected disadvantaged clusters will be identified using the Regional Cancer Screening Coordinating Centre of Occitanie (CRCDC-OC) database. Women in the experimental group will receive screening reminder letters and HPVss kits, combined with access to a chatbot-based decision aid tailored to women with lower education attainment. Women in the control group will receive the reminder letters and HPVss kits (standard of care). The CRCDC-OC database will be used to check trial progress and assess the intervention’s impact. The trial has 2 primary outcomes: (1) the proportion of screening participation within 12 months among women recalled for CCS and (2) the proportion of HPVss-positive women who are “well-managed” as stipulated in the French guidelines. Results: To date, the AppDate-You study group is preparing and developing the chatbot-based decision aid (intervention). The cRCT will be conducted once the decision aid has been completed and validated. Recruitment of women is expected to begin in January 2023. Conclusions: This study is the first to evaluate the impact of a chatbot-based decision aid to promote the CCS program and increase its performance. The study results will inform policy makers and health professionals as well as the research community. Trial Registration: ClinicalTrials.gov NCT05286034; https://clinicaltrials.gov/ct2/show/NCT05286034 International Registered Report Identifier (IRRID): PRR1-10.2196/39288 %M 35771872 %R 10.2196/39288 %U https://www.researchprotocols.org/2022/8/e39288 %U https://doi.org/10.2196/39288 %U http://www.ncbi.nlm.nih.gov/pubmed/35771872 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 7 %P e34246 %T Effects of an Explicit Value Clarification Method With Computer-Tailored Advice on the Effectiveness of a Web-Based Smoking Cessation Decision Aid: Findings From a Randomized Controlled Trial %A Gültzow,Thomas %A Smit,Eline Suzanne %A Crutzen,Rik %A Jolani,Shahab %A Hoving,Ciska %A Dirksen,Carmen D %+ Department of Work & Social Psychology, Faculty of Psychology and Neuroscience, Maastricht University, PO Box 616, Maastricht, 6200 MD, Netherlands, 31 433881511, thomas.gultzow@maastrichtuniversity.nl %K digital health %K decision-making %K decision support technique %K decision aid %K smoking %K smoking cessation %K informed decision-making %K decision support %K decision support tool %K eHealth %K evidence-based medicine %K value clarification method %D 2022 %7 15.7.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Smoking continues to be a driver of mortality. Various forms of evidence-based cessation assistance exist; however, their use is limited. The choice between them may also induce decisional conflict. Offering decision aids (DAs) may be beneficial; however, insights into their effective elements are lacking. Objective: This study tested the added value of an effective element (ie, an “explicit value clarification method” paired with computer-tailored advice indicating the most fitting cessation assistance) of a web-based smoking cessation DA. Methods: A web-based randomized controlled trial was conducted among smokers motivated to stop smoking within 6 months. The intervention group received a DA with the aforementioned elements, and the control group received the same DA without these elements. The primary outcome measure was 7-day point prevalence abstinence 6 months after baseline (time point 3 [t=3]). Secondary outcome measures were 7-day point prevalence of abstinence 1 month after baseline (time point 2 [t=2]), evidence-based cessation assistance use (t=2 and t=3), and decisional conflict (immediately after DA; time point 1). Logistic and linear regression analyses were performed to assess the outcomes. Analyses were conducted following 2 (decisional conflict) and 3 (smoking cessation) outcome scenarios: complete cases, worst-case scenario (assuming that dropouts still smoked), and multiple imputations. A priori sample size calculation indicated that 796 participants were needed. The participants were mainly recruited on the web (eg, social media). All the data were self-reported. Results: Overall, 2375 participants were randomized (intervention n=1164, 49.01%), of whom 599 (25.22%; intervention n=275, 45.91%) completed the DAs, and 276 (11.62%; intervention n=143, 51.81%), 97 (4.08%; intervention n=54, 55.67%), and 103 (4.34%; intervention n=56, 54.37%) completed time point 1, t=2, and t=3, respectively. More participants stopped smoking in the intervention group (23/63, 37%) than in the control group (14/52, 27%) after 6 months; however, this was only statistically significant in the worst-case scenario (crude P=.02; adjusted P=.04). Effects on the secondary outcomes were only observed for smoking abstinence after 1 month (15/55, 27%, compared with 7/46, 15%, in the crude and adjusted models, respectively; P=.02) and for cessation assistance uptake after 1 month (26/56, 46% compared with 18/47, 38% only in the crude model; P=.04) and 6 months (38/61, 62% compared with 26/50, 52%; crude P=.01; adjusted P=.02) but only in the worst-case scenario. Nonuse attrition was 34.19% higher in the intervention group than in the control group (P<.001). Conclusions: Currently, we cannot confidently recommend the inclusion of explicit value clarification methods and computer-tailored advice. However, they might result in higher nonuse attrition rates, thereby limiting their potential. As a lack of statistical power may have influenced the outcomes, we recommend replicating this study with some adaptations based on the lessons learned. Trial Registration: Netherlands Trial Register NL8270; https://www.trialregister.nl/trial/8270 International Registered Report Identifier (IRRID): RR2-10.2196/21772 %M 35838773 %R 10.2196/34246 %U https://www.jmir.org/2022/7/e34246 %U https://doi.org/10.2196/34246 %U http://www.ncbi.nlm.nih.gov/pubmed/35838773 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 2 %P e28238 %T Apps for Promoting Children’s Oral Health: Systematic Search in App Stores and Quality Evaluation %A Ho,Teresa C Y %A McGrath,Colman %A Yiu,Cynthia K Y %A Lee,Gillian H M %+ Paediatric Dentistry & Orthodontics, Faculty of Dentistry, University of Hong Kong, Room 2A20A, 2/F, Prince Philip Dental Hospital, 34 Hospital Road, Sai Ying Pun, Hong Kong, China (Hong Kong), 852 28590255, lee.gillian@gmail.com %K apps %K oral health %K evidence-based %K oral hygiene %K children %D 2022 %7 6.6.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Increasingly, mobile apps are being used to promote oral care. Many of them are aimed at children. Objective: This study aimed to systematically search and evaluate apps that promote oral care and hygiene for children. Methods: A broad search strategy (13 keywords) was developed to identify apps from Apple’s App Store and the Google Play Store in April 2019. After reviewing the apps’ titles and summaries, potentially relevant apps were downloaded for viewing. The quality of the apps that met the inclusion criteria was assessed by the Health on the Net Foundation Code of Conduct (HONcode) criteria for medical and health websites and the Scientific Basis of Oral Self-care (SBOSC). Results: More than 3000 Apps were identified and 54 relevant apps informed the review. The quality of the apps according to the HONcode criteria was generally low. The mean HONcode score was 1.8/8.0. One-quarter of the apps had a HONcode score of 0 (14/54, 26%). The SBOSC score of the apps was evaluated based on a 6-point scale. The mean SBOSC score was 1.5/6.0; 19% (10/54) of the apps had a score of 0. There was a significant and positive correlation between HONcode and SBOSC scores (r=0.37; P<.01). More recently uploaded apps had significantly higher HONcode scores (P<.05). Conclusions: There are many apps aiming to promote oral self-care among children. The quality and scientific basis of these apps are low. Newer apps are of higher quality in terms of scientific basis. There is a need to ensure high-quality and evidence-based apps are available. The effectiveness of apps in terms of oral care and clinical outcomes among children needs to be evaluated. %M 35666565 %R 10.2196/28238 %U https://pediatrics.jmir.org/2022/2/e28238 %U https://doi.org/10.2196/28238 %U http://www.ncbi.nlm.nih.gov/pubmed/35666565 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 2 %P e35478 %T Development of a Digital Tool for People With a Long-Term Condition Using Stroke as a Case Example: Participatory Design Approach %A Kjörk,Emma K %A Sunnerhagen,Katharina S %A Lundgren-Nilsson,Åsa %A Andersson,Anders K %A Carlsson,Gunnel %+ Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Per Dubbsgatan 14, 3 floor, Gothenburg, 413 45, Sweden, 46 735124309, emma.kjork@gu.se %K eHealth %K digital tool %K Strokehälsa %K follow-up %K chronic care %K stroke %K Post-Stroke Checklist %K health literacy %K co-design %K shared decision making %D 2022 %7 3.6.2022 %9 Original Paper %J JMIR Hum Factors %G English %X 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, Strokehälsa [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 %M 35657650 %R 10.2196/35478 %U https://humanfactors.jmir.org/2022/2/e35478 %U https://doi.org/10.2196/35478 %U http://www.ncbi.nlm.nih.gov/pubmed/35657650 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 6 %P e38456 %T Using Digital Media to Improve Dementia Care in India: Protocol for a Randomized Controlled Trial %A Brijnath,Bianca %A Baruah,Upasana %A Antoniades,Josefine %A Varghese,Mathew %A Cooper,Claudia %A Dow,Briony %A Kent,Mike %A Loganathan,Santosh %+ National Ageing Research Institute, 34-54 Poplar Road (via Gate 4), Unit 2, Parkville, 3052, Australia, 61 433043708, b.brijnath@nari.edu.au %K dementia %K care %K India %K digital health %K film %D 2022 %7 2.6.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: India is undergoing a demographic transition characterized by population aging and is witnessing a high dementia rate. Although nearly 7 million people live with dementia in India, dementia awareness is poor, and current resources addressing dementia care are basic and often incomplete, duplicated, or conflicting. To address this gap, this study aims to use digital media, which has had a massive technological uptake in India, to improve dementia care in India. Objective: The objective of this paper is to describe an intervention study design that examines the feasibility and acceptability of Moving Pictures India, a digital media resource to improve dementia care in India. Methods: This study employs a mixed methods design and is divided into 4 phases: (1) video interviews with Indian caregivers and health professionals; (2) coproduction of resources; (3) pilot randomized controlled trial (RCT); and (4) dissemination and analytics. The pilot RCT will follow an experimental parallel group design with 2 arms aiming to assess the impact, feasibility, and acceptability of the developed resources. The primary outcome measures for the pilot RCT will be feasibility and acceptability, while the secondary outcome measures will be caregiver burden, mood, and quality of life. Results: This study received funding from the Alzheimer’s Association in the United States in July 2021. In 2023, we will enroll 60 dementia caregivers (40 caregivers in the intervention arm and 20 in the control) for the pilot RCT. The study has been approved by the National Institute of Mental Health and Neuro Sciences Ethics Committee (26th IEC (BEH.SC.DIV.)/2020-21 dated November 11, 2020); the Health Ministry's Screening Committee, India (proposal ID 2020-10137); the Curtin University Human Research Ethics Committee (approval number HRE2020-0735); and the NARI Research Governance Office (site-specific approval dated March 17, 2021). Conclusions: This protocol is designed to deliver unique, coproduced, and evidence-based media resources to support caregivers of persons with dementia in India and other countries aiming to utilize digital media for dementia care. If the intervention is found feasible and acceptable, postpiloting analytics and qualitative feedback will be used to develop an implementation trial to evaluate the effectiveness of the potential low-risk high-benefit intervention in practice. Trial Registration: Clinical Trials Registry-India CTRI/2021/01/030403; http://ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=50794 International Registered Report Identifier (IRRID): DERR1-10.2196/38456 %M 35653168 %R 10.2196/38456 %U https://www.researchprotocols.org/2022/6/e38456 %U https://doi.org/10.2196/38456 %U http://www.ncbi.nlm.nih.gov/pubmed/35653168 %0 Journal Article %@ 2563-6316 %I JMIR Publications %V 3 %N 2 %P e29706 %T 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 %A Korngiebel,Diane M %A West,Kathleen McGlone %+ University of Washington, 1959 NE Pacific St, Seattle, WA, 98195, United States, dmkorngiebel@gmail.com %K user-centered design %K genomic medicine %K patient portals %K electronic health records %K return of results %K bioethics %K genetics %K genetic testing %K patient preferences %K design %K human factors %K mobile phone %D 2022 %7 31.5.2022 %9 Original Paper %J JMIRx Med %G English %X 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. %M 37725563 %R 10.2196/29706 %U https://med.jmirx.org/2022/2/e29706/ %U https://doi.org/10.2196/29706 %U http://www.ncbi.nlm.nih.gov/pubmed/37725563 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 5 %P e36835 %T Readability of English, German, and Russian Disease-Related Wikipedia Pages: Automated Computational Analysis %A Gordejeva,Jelizaveta %A Zowalla,Richard %A Pobiruchin,Monika %A Wiesner,Martin %+ Department of Medical Informatics, Heilbronn University, Max-Planck-Str 39, Heilbronn, 74081, Germany, 49 7131504 ext 6947, martin.wiesner@hs-heilbronn.de %K readability %K health literacy %K health education %K Wikipedia %D 2022 %7 16.5.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Wikipedia is a popular encyclopedia for health- and disease-related information in which patients seek advice and guidance on the web. Yet, Wikipedia articles can be unsuitable as patient education materials, as investigated in previous studies that analyzed specific diseases or medical topics with a comparatively small sample size. Currently, no data are available on the average readability levels of all disease-related Wikipedia pages for the different localizations of this particular encyclopedia. Objective: This study aimed to analyze disease-related Wikipedia pages written in English, German, and Russian using well-established readability metrics for each language. Methods: Wikipedia database snapshots and Wikidata metadata were chosen as resources for data collection. Disease-related articles were retrieved separately for English, German, and Russian starting with the main concept of Human Diseases and Disorders (German: Krankheit; Russian: Заболевания человека). In the case of existence, the corresponding International Classification of Diseases, Tenth Revision (ICD-10), codes were retrieved for each article. Next, the raw texts were extracted and readability metrics were computed. Results: The number of articles included in this study for English, German, and Russian Wikipedia was n=6127, n=6024, and n=3314, respectively. Most disease-related articles had a Flesch Reading Ease (FRE) score <50.00, signaling difficult or very difficult educational material (English: 5937/6125, 96.93%; German: 6004/6022, 99.7%; Russian: 2647/3313, 79.9%). In total, 70% (7/10) of the analyzed articles could be assigned an ICD-10 code with certainty (English: 4235/6127, 69.12%; German: 4625/6024, 76.78%; Russian: 2316/3314, 69.89%). For articles with ICD-10 codes, the mean FRE scores were 28.69 (SD 11.00), 20.33 (SD 9.98), and 38.54 (SD 13.51) for English, German, and Russian, respectively. A total of 9 English ICD-10 chapters (11 German and 10 Russian) showed significant differences: chapter F (FRE 23.88, SD 9.95; P<.001), chapter E (FRE 25.14, SD 9.88; P<.001), chapter H (FRE 30.04, SD 10.57; P=.049), chapter I (FRE 30.05, SD 9.07; P=.04), chapter M (FRE 31.17, 11.94; P<.001), chapter T (FRE 32.06, SD 10.51; P=.001), chapter A (FRE 32.63, SD 9.25; P<.001), chapter B (FRE 33.24, SD 9.07; P<.001), and chapter S (FRE 39.02, SD 8.22; P<.001). Conclusions: Disease-related English, German, and Russian Wikipedia articles cannot be recommended as patient education materials because a major fraction is difficult or very difficult to read. The authors of Wikipedia pages should carefully revise existing text materials for readers with a specific interest in a disease or its associated symptoms. Special attention should be given to articles on mental, behavioral, and neurodevelopmental disorders (ICD-10 chapter F) because these articles were most difficult to read in comparison with other ICD-10 chapters. Wikipedia readers should be supported by editors providing a short and easy-to-read summary for each article. %M 35576562 %R 10.2196/36835 %U https://www.jmir.org/2022/5/e36835 %U https://doi.org/10.2196/36835 %U http://www.ncbi.nlm.nih.gov/pubmed/35576562 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 5 %P e31810 %T Triage Accuracy of Symptom Checker Apps: 5-Year Follow-up Evaluation %A Schmieding,Malte L %A Kopka,Marvin %A Schmidt,Konrad %A Schulz-Niethammer,Sven %A Balzer,Felix %A Feufel,Markus A %+ Institute of Medical Informatics, Charité - Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitéplatz 1, Berlin, 10117, Germany, 49 30450 570425, malte.schmieding@charite.de %K digital health %K triage %K symptom checker %K patient-centered care %K eHealth apps %K mobile phone %D 2022 %7 10.5.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Symptom checkers are digital tools assisting laypersons in self-assessing the urgency and potential causes of their medical complaints. They are widely used but face concerns from both patients and health care professionals, especially regarding their accuracy. A 2015 landmark study substantiated these concerns using case vignettes to demonstrate that symptom checkers commonly err in their triage assessment. Objective: This study aims to revisit the landmark index study to investigate whether and how symptom checkers’ capabilities have evolved since 2015 and how they currently compare with laypersons’ stand-alone triage appraisal. Methods: In early 2020, we searched for smartphone and web-based applications providing triage advice. We evaluated these apps on the same 45 case vignettes as the index study. Using descriptive statistics, we compared our findings with those of the index study and with publicly available data on laypersons’ triage capability. Results: We retrieved 22 symptom checkers providing triage advice. The median triage accuracy in 2020 (55.8%, IQR 15.1%) was close to that in 2015 (59.1%, IQR 15.5%). The apps in 2020 were less risk averse (odds 1.11:1, the ratio of overtriage errors to undertriage errors) than those in 2015 (odds 2.82:1), missing >40% of emergencies. Few apps outperformed laypersons in either deciding whether emergency care was required or whether self-care was sufficient. No apps outperformed the laypersons on both decisions. Conclusions: Triage performance of symptom checkers has, on average, not improved over the course of 5 years. It decreased in 2 use cases (advice on when emergency care is required and when no health care is needed for the moment). However, triage capability varies widely within the sample of symptom checkers. Whether it is beneficial to seek advice from symptom checkers depends on the app chosen and on the specific question to be answered. Future research should develop resources (eg, case vignette repositories) to audit the capabilities of symptom checkers continuously and independently and provide guidance on when and to whom they should be recommended. %M 35536633 %R 10.2196/31810 %U https://www.jmir.org/2022/5/e31810 %U https://doi.org/10.2196/31810 %U http://www.ncbi.nlm.nih.gov/pubmed/35536633 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 2 %P e36317 %T Parental Knowledge, Self-confidence, and Usability Evaluation of a Web-Based Infographic for Pediatric Concussion: Multimethod Study %A Campbell,Alyson %A Hartling,Lisa %A Plourde,Vickie %A Scott,Shannon D %+ Faculty of Nursing, University of Alberta, Level 3 Edmonton Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada, 1 780 492 1037, shannon.scott@ualberta.ca %K concussion %K mTBI %K usability evaluation %K knowledge assessment %K knowledge translation %K parent knowledge %K parent confidence %K patient engagement %K educational tool %D 2022 %7 10.5.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Concussions, which are known as mild traumatic brain injuries, are complex injuries caused by direct or indirect blows to the head and are increasingly being recognized as a significant public health concern for children and their families. Previous research has identified few studies examining the efficacy of educational interventions on parental concussion knowledge. The aim of this research was to actively work together with children who have experienced a concussion and their parents to develop, refine, and evaluate the usability of a web-based infographic for pediatric concussion. Objective: The objective of this study was to report on the usability of the infographic, parental knowledge, and self-confidence in pediatric concussion knowledge before and after exposure to the infographic. Methods: A multiphase, multimethod research design using patient engagement techniques was used to develop a web-based infographic. For this phase of the research (usability, knowledge, and confidence evaluation), parents who could communicate in English were recruited via social media platforms and invited to complete web-based questionnaires. Electronic preintervention and postintervention questionnaires were administered to parents to assess changes to concussion knowledge and confidence after viewing the infographic. A usability questionnaire with 11 items was also completed. Results: A web-based, infographic was developed. The infographic is intended for parents and children and incorporates information that parents and children identified as both wants and needs about concussion alongside the best available research evidence on pediatric concussion. A total of 31 surveys were completed by parents. The mean scores for each item on the usability surveys ranged from 8.03 (SD 1.70) to 9.26 (SD 1.09) on a 10-point Likert scale, indicating that the usability components of the infographic were largely positive. There was no statistically significant difference between preintervention and postintervention knowledge scores (Z=−0.593; P=.55; both preintervention and postintervention knowledge scores had a median of 9 out of 10). In contrast, there was a statistically significant difference between preintervention (mean 3.9/5, SD 0.56) and postintervention (mean 4.4/5, SD 0.44) confidence in knowledge scores (t30=−5.083; P<.001). Conclusions: Our results demonstrate that parents positively rated a web-based, infographic for pediatric concussion. In addition, although there was no statistically significant difference overall in parents’ knowledge scores before and after viewing the infographic, their confidence in their knowledge did significantly increase. These results suggest that using a web-based infographic as a knowledge translation intervention may be useful in increasing parents’ confidence in managing their child’s concussion. %M 35536631 %R 10.2196/36317 %U https://pediatrics.jmir.org/2022/2/e36317 %U https://doi.org/10.2196/36317 %U http://www.ncbi.nlm.nih.gov/pubmed/35536631 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 5 %P e32006 %T Factors Predicting Engagement of Older Adults With a Coach-Supported eHealth Intervention Promoting Lifestyle Change and Associations Between Engagement and Changes in Cardiovascular and Dementia Risk: Secondary Analysis of an 18-Month Multinational Randomized Controlled Trial %A Coley,Nicola %A Andre,Laurine %A Hoevenaar-Blom,Marieke P %A Ngandu,Tiia %A Beishuizen,Cathrien %A Barbera,Mariagnese %A van Wanrooij,Lennard %A Kivipelto,Miia %A Soininen,Hilkka %A van Gool,Willem %A Brayne,Carol %A Moll van Charante,Eric %A Richard,Edo %A Andrieu,Sandrine %A , %A , %+ Center for Epidemiology and Research in Population health (CERPOP), University of Toulouse III Paul Sabatier (UPS), National Institute of Health and Medical Research (INSERM) mixed research unit (UMR) 1295, 37 allées Jules Guesde, Toulouse, 31000, France, 33 561145680, nicola.coley@inserm.fr %K aging %K eHealth %K disparities %K engagement %K prevention %K cardiovascular %K lifestyle %K risk factors %D 2022 %7 9.5.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Digital health interventions could help to prevent age-related diseases, but little is known about how older adults engage with such interventions, especially in the long term, or whether engagement is associated with changes in clinical, behavioral, or biological outcomes in this population. Disparities in engagement levels with digital health interventions may exist among older people and be associated with health inequalities. Objective: This study aimed to describe older adults’ engagement with an eHealth intervention, identify factors associated with engagement, and examine associations between engagement and changes in cardiovascular and dementia risk factors (blood pressure, cholesterol, BMI, physical activity, diet, and cardiovascular and dementia risk scores). Methods: This was a secondary analysis of the 18-month randomized controlled Healthy Ageing Through Internet Counselling in the Elderly trial of a tailored internet-based intervention encouraging behavior changes, with remote support from a lifestyle coach, to reduce cardiovascular and cognitive decline risk in 2724 individuals aged ≥65 years, recruited offline in the Netherlands, Finland, and France. Engagement was assessed via log-in frequency, number of lifestyle goals set, measurements entered and messages sent to coaches, and percentage of education materials read. Clinical and biological data were collected during in-person visits at baseline and 18 months. Lifestyle data were self-reported on a web-based platform. Results: Of the 1389 intervention group participants, 1194 (85.96%) sent at least one message. They logged in a median of 29 times, and set a median of 1 goal. Higher engagement was associated with significantly greater improvement in biological and behavioral risk factors, with evidence of a dose-response effect. Compared with the control group, the adjusted mean difference (95% CI) in 18-month change in the primary outcome, a composite z-score comprising blood pressure, BMI, and cholesterol, was −0.08 (−0.12 to −0.03), −0.04 (−0.08 to 0.00), and 0.00 (−0.08 to 0.08) in the high, moderate, and low engagement groups, respectively. Low engagers showed no improvement in any outcome measures compared with the control group. Participants not using a computer regularly before the study engaged much less with the intervention than those using a computer up to 7 (adjusted odds ratio 5.39, 95% CI 2.66-10.95) or ≥7 hours per week (adjusted odds ratio 6.58, 95% CI 3.21-13.49). Those already working on or with short-term plans for lifestyle improvement at baseline, and with better cognition, engaged more. Conclusions: Greater engagement with an eHealth lifestyle intervention was associated with greater improvement in risk factors in older adults. However, those with limited computer experience, who tended to have a lower level of education, or who had poorer cognition engaged less. Additional support or forms of intervention delivery for such individuals could help minimize potential health inequalities associated with the use of digital health interventions in older people. %M 35385395 %R 10.2196/32006 %U https://www.jmir.org/2022/5/e32006 %U https://doi.org/10.2196/32006 %U http://www.ncbi.nlm.nih.gov/pubmed/35385395 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 2 %P e29618 %T Online Health Information Seeking for Self and Child: An Experimental Study of Parental Symptom Search %A Kubb,Christian %A Foran,Heather M %+ Health Psychology Unit, Institute of Psychology, Universität Klagenfurt, Universitätsstr. 65-67, Klagenfurt, 9020, Austria, 43 463 2700 1631, christian.kubb@aau.at %K online health information seeking %K digital health %K parents %K parent-child %K eHealth literacy %K human computer interaction %K mobile phone %D 2022 %7 9.5.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Parents often search the web for health-related information for themselves or on behalf of their children, which may impact their health-related decision-making and behaviors. In particular, searching for somatic symptoms such as headaches, fever, or fatigue is common. However, little is known about how psychological and relational factors relate to the characteristics of successful symptom-related internet searches. To date, few studies have used experimental designs that connect participant subjective search evaluation with objective search behavior metrics. Objective: This study aimed to examine the features of web-based health-related search behaviors based on video-coded observational data, to investigate which psychological and relational factors are related to successful symptom search appraisal, and to examine the differences in search-related outcomes among self-seekers and by-proxy seekers. Methods: In a laboratory setting, parents living in Austria (N=46) with a child aged between 0 and 6 years were randomized to search their own (n=23, 50%) or their child’s (n=23, 50%) most recent somatic symptom on the web. Web-based activity was recorded and transcribed. Health anxiety, eHealth literacy, attitude toward web-based health information, relational variables, state of stress, participants’ search appraisals, and quantitative properties of the search session were assessed. Differences in search appraisals and search characteristics among parents who searched for themselves or their children were examined. Results: Across both groups, searches were carried out for 17 different symptom clusters. Almost all parents started with Google (44/46, 96%), and a majority used initial elaborated key phrases with >1 search keyword (38/45, 84%) and performed on average 2.95 (SD 1.83) search queries per session. Search success was negatively associated with health anxiety (rs=−0.39, P=.01), stress after the search (rs=−0.33, P=.02), and the number of search queries (rs=−0.29, P=.04) but was not significantly associated with eHealth literacy (rs=0.22, P=.13). Of note, eHealth literacy was strongly and positively correlated with satisfaction during the search (rs=0.50, P<.001) but did not significantly correlate with search characteristics as measured by search duration (rs=0.08, P=.56), number of performed search queries (rs=0.20, P=.17), or total clicks (rs=0.14, P=.32). No differences were found between parents searching for their own symptoms and parents searching for their child’s symptoms. Conclusions: This study provides exploratory findings regarding relevant dimensions of appraisals for symptom-based information seeking on the web. Consistent with previous literature, health anxiety was found to be associated with poorer search evaluation. Contrary to expectations, eHealth literacy was related neither to search success nor to search characteristics. Interestingly, we did not find significant differences between self-seekers and by-proxy seekers, suggesting similar search and evaluation patterns in our sample. Further research with larger samples is needed to identify and evaluate guidelines for enhanced web-based health information seeking among parents and the general public. %M 35532970 %R 10.2196/29618 %U https://pediatrics.jmir.org/2022/2/e29618 %U https://doi.org/10.2196/29618 %U http://www.ncbi.nlm.nih.gov/pubmed/35532970 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 2 %P e33967 %T Enhancing Clinical Information Display to Improve Patient Encounters: Human-Centered Design and Evaluation of the Parkinson Disease-BRIDGE Platform %A Brown,Ethan G %A Schleimer,Erica %A Bledsoe,Ian O %A Rowles,William %A Miller,Nicolette A %A Sanders,Stephan J %A Rankin,Katherine P %A Ostrem,Jill L %A Tanner,Caroline M %A Bove,Riley %+ University of California San Francisco Weill Institute for Neurosciences, University of California San Francisco, San Francisco, CA, United States, 1 415 353 2311, riley.bove@ucsf.edu %K human-centered design %K personal health record %K visualization in eHealth %K Parkinson disease %K digital health %D 2022 %7 6.5.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: People with Parkinson disease (PD) have a variety of complex medical problems that require detailed review at each clinical encounter for appropriate management. Care of other complex conditions has benefited from digital health solutions that efficiently integrate disparate clinical information. Although various digital approaches have been developed for research and care in PD, no digital solution to personalize and improve communication in a clinical encounter is readily available. Objective: We intend to improve the efficacy and efficiency of clinical encounters with people with PD through the development of a platform (PD-BRIDGE) with personalized clinical information from the electronic health record (EHR) and patient-reported outcome (PRO) data. Methods: Using human-centered design (HCD) processes, we engaged clinician and patient stakeholders in developing PD-BRIDGE through three phases: an inspiration phase involving focus groups and discussions with people having PD, an ideation phase generating preliminary mock-ups for feedback, and an implementation phase testing the platform. To qualitatively evaluate the platform, movement disorders neurologists and people with PD were sent questionnaires asking about the technical validity, usability, and clinical relevance of PD-BRIDGE after their encounter. Results: The HCD process led to a platform with 4 modules. Among these, 3 modules that pulled data from the EHR include a longitudinal module showing motor ratings over time, a display module showing the most recently collected clinical rating scales, and another display module showing relevant laboratory values and diagnoses; the fourth module displays motor symptom fluctuation based on an at-home diary. In the implementation phase, PD-BRIDGE was used in 17 clinical encounters for patients cared for by 1 of 11 movement disorders neurologists. Most patients felt that PD-BRIDGE facilitated communication with their clinician (n=14, 83%) and helped them understand their disease trajectory (n=11, 65%) and their clinician’s recommendations (n=11, 65%). Neurologists felt that PD-BRIDGE improved their ability to understand the patients’ disease course (n=13, 75% of encounters), supported clinical care recommendations (n=15, 87%), and helped them communicate with their patients (n=14, 81%). In terms of improvements, neurologists noted that data in PD-BRIDGE were not exhaustive in 62% (n=11) of the encounters. Conclusions: Integrating clinically relevant information from EHR and PRO data into a visually efficient platform (PD-BRIDGE) can facilitate clinical encounters with people with PD. Developing new modules with more disparate information could improve these complex encounters even further. %M 35522472 %R 10.2196/33967 %U https://humanfactors.jmir.org/2022/2/e33967 %U https://doi.org/10.2196/33967 %U http://www.ncbi.nlm.nih.gov/pubmed/35522472 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 5 %P e37522 %T Using Smart Displays to Implement an eHealth System for Older Adults With Multiple Chronic Conditions: Protocol for a Randomized Controlled Trial %A Gustafson,David H %A Mares,Marie-Louise %A Johnston,Darcie C %A Landucci,Gina %A Pe-Romashko,Klaren %A Vjorn,Olivia J %A Hu,Yaxin %A Gustafson,David H %A Maus,Adam %A Mahoney,Jane E %A Mutlu,Bilge %+ Center for Health Enhancement Systems Studies, University of Wisconsin–Madison, Mechanical Engineering Bldg, 4th Fl., 1513 University Ave, Madison, WI, 53706, United States, 1 608 890 2615, dcjohnston@wisc.edu %K eHealth %K aged %K geriatrics %K multiple chronic conditions %K chronic pain %K smart displays %K smart speakers %K quality of life %K primary care %K health expenditures %K mobile phone %D 2022 %7 5.5.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Voice-controlled smart speakers and displays have a unique but unproven potential for delivering eHealth interventions. Many laptop- and smartphone-based interventions have been shown to improve multiple outcomes, but voice-controlled platforms have not been tested in large-scale rigorous trials. Older adults with multiple chronic health conditions, who need tools to help with their daily management, may be especially good candidates for interventions on voice-controlled devices because these patients often have physical limitations, such as tremors or vision problems, that make the use of laptops and smartphones challenging. Objective: The aim of this study is to assess whether participants using an evidence-based intervention (ElderTree) on a smart display will experience decreased pain interference and improved quality of life and related measures in comparison with participants using ElderTree on a laptop and control participants who are given no device or access to ElderTree. Methods: A total of 291 adults aged ≥60 years with chronic pain and ≥3 additional chronic conditions will be recruited from primary care clinics and community organizations and randomized 1:1:1 to ElderTree access on a smart display along with their usual care, ElderTree access on a touch screen laptop along with usual care, or usual care alone. All patients will be followed for 8 months. The primary outcomes are differences between groups in measures of pain interference and psychosocial quality of life. The secondary outcomes are between-group differences in system use at 8 months, physical quality of life, pain intensity, hospital readmissions, communication with medical providers, health distress, well-being, loneliness, and irritability. We will also examine mediators and moderators of the effects of ElderTree on both platforms. At baseline, 4 months, and 8 months, patients will complete written surveys comprising validated scales selected for good psychometric properties with similar populations. ElderTree use data will be collected continuously in system logs. We will use linear mixed-effects models to evaluate outcomes over time, with treatment condition and time acting as between-participant factors. Separate analyses will be conducted for each outcome. Results: Recruitment began in August 2021 and will run through April 2023. The intervention period will end in December 2023. The findings will be disseminated via peer-reviewed publications. Conclusions: To our knowledge, this is the first study with a large sample and long time frame to examine whether a voice-controlled smart device can perform as well as or better than a laptop in implementing a health intervention for older patients with multiple chronic health conditions. As patients with multiple conditions are such a large cohort, the implications for cost as well as patient well-being are significant. Making the best use of current and developing technologies is a critical part of this effort. Trial Registration: ClinicalTrials.gov NCT04798196; https://clinicaltrials.gov/ct2/show/NCT04798196 International Registered Report Identifier (IRRID): PRR1-10.2196/37522 %M 35511229 %R 10.2196/37522 %U https://www.researchprotocols.org/2022/5/e37522 %U https://doi.org/10.2196/37522 %U http://www.ncbi.nlm.nih.gov/pubmed/35511229 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 2 %P e35219 %T Determinants of Laypersons’ Trust in Medical Decision Aids: Randomized Controlled Trial %A Kopka,Marvin %A Schmieding,Malte L %A Rieger,Tobias %A Roesler,Eileen %A Balzer,Felix %A Feufel,Markus A %+ Institute of Medical Informatics, Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitépl 1, Berlin, 10117, Germany, 49 30 450 581 052, marvin.kopka@charite.de %K symptom checkers %K disposition advice %K anthropomorphism %K artificial intelligence %K urgency assessment %K patient-centered care %K human-computer interaction %K consumer health %K information technology %K IT %K mobile phone %D 2022 %7 3.5.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Symptom checker apps are patient-facing decision support systems aimed at providing advice to laypersons on whether, where, and how to seek health care (disposition advice). Such advice can improve laypersons’ self-assessment and ultimately improve medical outcomes. Past research has mainly focused on the accuracy of symptom checker apps’ suggestions. To support decision-making, such apps need to provide not only accurate but also trustworthy advice. To date, only few studies have addressed the question of the extent to which laypersons trust symptom checker app advice or the factors that moderate their trust. Studies on general decision support systems have shown that framing automated systems (anthropomorphic or emphasizing expertise), for example, by using icons symbolizing artificial intelligence (AI), affects users’ trust. Objective: This study aims to identify the factors influencing laypersons’ trust in the advice provided by symptom checker apps. Primarily, we investigated whether designs using anthropomorphic framing or framing the app as an AI increases users’ trust compared with no such framing. Methods: Through a web-based survey, we recruited 494 US residents with no professional medical training. The participants had to first appraise the urgency of a fictitious patient description (case vignette). Subsequently, a decision aid (mock symptom checker app) provided disposition advice contradicting the participants’ appraisal, and they had to subsequently reappraise the vignette. Participants were randomized into 3 groups: 2 experimental groups using visual framing (anthropomorphic, 160/494, 32.4%, vs AI, 161/494, 32.6%) and a neutral group without such framing (173/494, 35%). Results: Most participants (384/494, 77.7%) followed the decision aid’s advice, regardless of its urgency level. Neither anthropomorphic framing (odds ratio 1.120, 95% CI 0.664-1.897) nor framing as AI (odds ratio 0.942, 95% CI 0.565-1.570) increased behavioral or subjective trust (P=.99) compared with the no-frame condition. Even participants who were extremely certain in their own decisions (ie, 100% certain) commonly changed it in favor of the symptom checker’s advice (19/34, 56%). Propensity to trust and eHealth literacy were associated with increased subjective trust in the symptom checker (propensity to trust b=0.25; eHealth literacy b=0.2), whereas sociodemographic variables showed no such link with either subjective or behavioral trust. Conclusions: Contrary to our expectation, neither the anthropomorphic framing nor the emphasis on AI increased trust in symptom checker advice compared with that of a neutral control condition. However, independent of the interface, most participants trusted the mock app’s advice, even when they were very certain of their own assessment. Thus, the question arises as to whether laypersons use such symptom checkers as substitutes rather than as aids in their own decision-making. With trust in symptom checkers already high at baseline, the benefit of symptom checkers depends on interface designs that enable users to adequately calibrate their trust levels during usage. Trial Registration: Deutsches Register Klinischer Studien DRKS00028561; https://tinyurl.com/rv4utcfb (retrospectively registered). %M 35503248 %R 10.2196/35219 %U https://humanfactors.jmir.org/2022/2/e35219 %U https://doi.org/10.2196/35219 %U http://www.ncbi.nlm.nih.gov/pubmed/35503248 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 2 %P e29118 %T Effective Communication of Personalized Risks and Patient Preferences During Surgical Informed Consent Using Data Visualization: Qualitative Semistructured Interview Study With Patients After Surgery %A Gisladottir,Undina %A Nakikj,Drashko %A Jhunjhunwala,Rashi %A Panton,Jasmine %A Brat,Gabriel %A Gehlenborg,Nils %+ Department of Biomedical Informatics, Harvard Medical School, Harvard University, 10 Shattuck Street, Suite 514, Boston, MA, 02115, United States, 1 6174321535, nils@hms.harvard.edu %K data visualization %K surgical informed consent %K shared decision-making %K biomedical informatics %D 2022 %7 29.4.2022 %9 Original Paper %J JMIR Hum Factors %G English %X 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. %M 35486432 %R 10.2196/29118 %U https://humanfactors.jmir.org/2022/2/e29118 %U https://doi.org/10.2196/29118 %U http://www.ncbi.nlm.nih.gov/pubmed/35486432 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 4 %P e36338 %T A Framework for Femtech: Guiding Principles for Developing Digital Reproductive Health Tools in the United States %A Krishnamurti,Tamar %A Birru Talabi,Mehret %A Callegari,Lisa S %A Kazmerski,Traci M %A Borrero,Sonya %+ Division of General Internal Medicine, University of Pittsburgh, 200 Meyran Avenue, Suite 200, Pittsburgh, PA, 15213, United States, 1 4126924855, tamark@pitt.edu %K United States %K North America %K femtech %K mHealth %K health equity %K pregnancy %K women's health %K preterm birth %K contraception %K family planning %K reproductive care %K sterilization %K cystic fibrosis %K rheumatic disease %K eHealth %K mobile health %K reproductive health %K digital health %K health technology %K health outcomes %D 2022 %7 28.4.2022 %9 Viewpoint %J J Med Internet Res %G English %X The United States has abysmal reproductive health indices that, in part, reflect stark inequities experienced by people of color and those with preexisting medical conditions. The growth of “femtech,” or technology-based solutions to women’s health issues, in the public and private sectors is promising, yet these solutions are often geared toward health-literate, socioeconomically privileged, and/or relatively healthy white cis-women. In this viewpoint, we propose a set of guiding principles for building technologies that proactively identify and address these critical gaps in health care for people from socially and economically marginalized populations that are capable of pregnancy, as well as people with serious chronic medical conditions. These guiding principles require that such technologies: (1) include community stakeholders in the design, development, and deployment of the technology; (2) are grounded in person-centered frameworks; and (3) address health disparities as a strategy to advance health equity and improve health outcomes. %M 35482371 %R 10.2196/36338 %U https://www.jmir.org/2022/4/e36338 %U https://doi.org/10.2196/36338 %U http://www.ncbi.nlm.nih.gov/pubmed/35482371 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 4 %P e32630 %T The Effects of Health Care Chatbot Personas With Different Social Roles on the Client-Chatbot Bond and Usage Intentions: Development of a Design Codebook and Web-Based Study %A Nißen,Marcia %A Rüegger,Dominik %A Stieger,Mirjam %A Flückiger,Christoph %A Allemand,Mathias %A v Wangenheim,Florian %A Kowatsch,Tobias %+ Centre for Digital Health Interventions, Department of Management, Technology, and Economics, ETH Zurich, Weinbergstrasse 56/58, Zurich, 8092, Switzerland, 41 44 632 65 66, mnissen@ethz.ch %K chatbot %K conversational agent %K social roles %K interpersonal closeness %K social role theory %K working alliance %K design %K persona %K digital health intervention %K web-based experiment %D 2022 %7 27.4.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: The working alliance refers to an important relationship quality between health professionals and clients that robustly links to treatment success. Recent research shows that clients can develop an affective bond with chatbots. However, few research studies have investigated whether this perceived relationship is affected by the social roles of differing closeness a chatbot can impersonate and by allowing users to choose the social role of a chatbot. Objective: This study aimed at understanding how the social role of a chatbot can be expressed using a set of interpersonal closeness cues and examining how these social roles affect clients’ experiences and the development of an affective bond with the chatbot, depending on clients’ characteristics (ie, age and gender) and whether they can freely choose a chatbot’s social role. Methods: Informed by the social role theory and the social response theory, we developed a design codebook for chatbots with different social roles along an interpersonal closeness continuum. Based on this codebook, we manipulated a fictitious health care chatbot to impersonate one of four distinct social roles common in health care settings—institution, expert, peer, and dialogical self—and examined effects on perceived affective bond and usage intentions in a web-based lab study. The study included a total of 251 participants, whose mean age was 41.15 (SD 13.87) years; 57.0% (143/251) of the participants were female. Participants were either randomly assigned to one of the chatbot conditions (no choice: n=202, 80.5%) or could freely choose to interact with one of these chatbot personas (free choice: n=49, 19.5%). Separate multivariate analyses of variance were performed to analyze differences (1) between the chatbot personas within the no-choice group and (2) between the no-choice and the free-choice groups. Results: While the main effect of the chatbot persona on affective bond and usage intentions was insignificant (P=.87), we found differences based on participants’ demographic profiles: main effects for gender (P=.04, ηp2=0.115) and age (P<.001, ηp2=0.192) and a significant interaction effect of persona and age (P=.01, ηp2=0.102). Participants younger than 40 years reported higher scores for affective bond and usage intentions for the interpersonally more distant expert and institution chatbots; participants 40 years or older reported higher outcomes for the closer peer and dialogical-self chatbots. The option to freely choose a persona significantly benefited perceptions of the peer chatbot further (eg, free-choice group affective bond: mean 5.28, SD 0.89; no-choice group affective bond: mean 4.54, SD 1.10; P=.003, ηp2=0.117). Conclusions: Manipulating a chatbot’s social role is a possible avenue for health care chatbot designers to tailor clients’ chatbot experiences using user-specific demographic factors and to improve clients’ perceptions and behavioral intentions toward the chatbot. Our results also emphasize the benefits of letting clients freely choose between chatbots. %M 35475761 %R 10.2196/32630 %U https://www.jmir.org/2022/4/e32630 %U https://doi.org/10.2196/32630 %U http://www.ncbi.nlm.nih.gov/pubmed/35475761 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 4 %P e35120 %T Challenges in Participant Engagement and Retention Using Mobile Health Apps: Literature Review %A Amagai,Saki %A Pila,Sarah %A Kaat,Aaron J %A Nowinski,Cindy J %A Gershon,Richard C %+ Northwestern University Feinberg School of Medicine, 625 North Michigan Avenue, 2700 suite, Chicago, IL, 60613, United States, 1 312 503 1725, saki.amagai@northwestern.edu %K mobile phone %K mHealth %K retention %K engagement %D 2022 %7 26.4.2022 %9 Review %J J Med Internet Res %G English %X 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. %M 35471414 %R 10.2196/35120 %U https://www.jmir.org/2022/4/e35120 %U https://doi.org/10.2196/35120 %U http://www.ncbi.nlm.nih.gov/pubmed/35471414 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 4 %P e33320 %T Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review %A Dupont,Charlèss %A Smets,Tinne %A Monnet,Fanny %A Pivodic,Lara %A De Vleminck,Aline %A Van Audenhove,Chantal %A Van den Block,Lieve %+ End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Laarbeeklaan 103, Brussels, 1090, Belgium, 32 484 433 257, charless.dupont@vub.be %K advance care planning %K systematic review %K web-based tools %K health communication %K quality of online content %D 2022 %7 20.4.2022 %9 Review %J J Med Internet Res %G English %X Background: There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature. Objective: This study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated. Methods: We systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28—a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables. Results: A total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources. Conclusions: A variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence. Trial Registration: PROSPERO CRD42020184112; https://tinyurl.com/mruf8b43 %M 35442207 %R 10.2196/33320 %U https://www.jmir.org/2022/4/e33320 %U https://doi.org/10.2196/33320 %U http://www.ncbi.nlm.nih.gov/pubmed/35442207 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 2 %P e34626 %T A Mobile App for Advance Care Planning and Advance Directives (Accordons-nous): Development and Usability Study %A Schöpfer,Céline %A Ehrler,Frederic %A Berger,Antoine %A Bollondi Pauly,Catherine %A Buytaert,Laurence %A De La Serna,Camille %A Hartheiser,Florence %A Fassier,Thomas %A Clavien,Christine %+ Institute for Ethics, History, and the Humanities, University Medical Center, University of Geneva, CMU/1 rue Michel Servet, Geneva, 1211, Switzerland, 41 22 379 46 00, celine.schopfer@etu.unige.ch %K usability %K mobile apps %K advance directives %K advance care planning %K mHealth %K mobile health %K palliative care %K mobile phone %D 2022 %7 20.4.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Advance care planning, including advance directives, is an important tool that allows patients to express their preferences for care if they are no longer able to express themselves. We developed Accordons-nous, a smartphone app that informs patients about advance care planning and advance directives, facilitates communication on these sensitive topics, and helps patients express their values and preferences for care. Objective: The first objective of this study is to conduct a usability test of this app. The second objective is to collect users’ critical opinions on the usability and relevance of the tool. Methods: We conducted a usability test by means of a think-aloud method, asking 10 representative patients to complete 7 browsing tasks. We double coded the filmed sessions to obtain descriptive data on task completion (with or without help), time spent, number of clicks, and the types of problems encountered. We assessed the severity of the problems encountered and identified the modifications needed to address these problems. We evaluated the readability of the app using Scolarius, a French equivalent of the Flesch Reading Ease test. By means of a posttest questionnaire, we asked participants to assess the app’s usability (System Usability Scale), relevance (Mobile App Rating Scale, section F), and whether they would recommend the app to the target groups: patients, health professionals, and patients’ caring relatives. Results: Participants completed the 7 think-aloud tasks in 80% (56/70) of the cases without any help from the experimenter, in 16% (11/70) of the cases with some help, and failed in 4% (3/70) of the cases. The analysis of failures and difficulties encountered revealed a series of major usability problems that could be addressed with minor modifications to the app. Accordons-nous obtained high scores on readability (overall score of 87.4 on Scolarius test, corresponding to elementary school level), usability (85.3/100 on System Usability Scale test), relevance (4.3/5 on the Mobile App Rating Scale, section F), and overall subjective endorsement on 3 I would recommend questions (4.7/5). Conclusions: This usability test helped us make the final changes to our app before its official launch. %M 35442206 %R 10.2196/34626 %U https://humanfactors.jmir.org/2022/2/e34626 %U https://doi.org/10.2196/34626 %U http://www.ncbi.nlm.nih.gov/pubmed/35442206 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 9 %N 4 %P e21208 %T Behavioral Health Professionals’ Perceptions on Patient-Controlled Granular Information Sharing (Part 1): Focus Group Study %A Ivanova,Julia %A Tang,Tianyu %A Idouraine,Nassim %A Murcko,Anita %A Whitfield,Mary Jo %A Dye,Christy %A Chern,Darwyn %A Grando,Adela %+ School of Human Evolution and Social Change, Arizona State University, 900 Cady Mall, Tempe, AZ, 85281, United States, 1 480 965 6213, jivanova@asu.edu %K behavioral health professional %K granular information %K granular information sharing %K electronic health record %K integrated health care %K electronic consent tool %D 2022 %7 20.4.2022 %9 Original Paper %J JMIR Ment Health %G English %X 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. %M 35442199 %R 10.2196/21208 %U https://mental.jmir.org/2022/4/e21208 %U https://doi.org/10.2196/21208 %U http://www.ncbi.nlm.nih.gov/pubmed/35442199 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 9 %N 4 %P e18792 %T Behavioral Health Professionals’ Perceptions on Patient-Controlled Granular Information Sharing (Part 2): Focus Group Study %A Ivanova,Julia %A Tang,Tianyu %A Idouraine,Nassim %A Murcko,Anita %A Whitfield,Mary Jo %A Dye,Christy %A Chern,Darwyn %A Grando,Adela %+ School of Human Evolution and Social Change, Arizona State University, 900 Cady Mall, Tempe, AZ, 85281, United States, 1 480 965 6213, jivanova@asu.edu %K behavioral health %K patient information %K granular information %K electronic health record %K integrated health care %K electronic consent tool %D 2022 %7 20.4.2022 %9 Original Paper %J JMIR Ment Health %G English %X 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. %M 35442213 %R 10.2196/18792 %U https://mental.jmir.org/2022/4/e18792 %U https://doi.org/10.2196/18792 %U http://www.ncbi.nlm.nih.gov/pubmed/35442213 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 4 %P e32960 %T Formative Provider Testing of a New Encounter Decision Aid for Smoking Cessation: Questionnaire Study %A Hollanda De Sa Neto,Herul %A Habfast-Robertson,Ines %A Hempel-Bruder,Christina %A Durand,Marie-Anne %A Jacot-Sadowski,Isabelle %A Khazaal,Yasser %A Berlin,Ivan %A Selby,Kevin %+ Center for Primary Care and Public Health (Unisanté), Rue de Bugnon 44, Lausanne, 1010, Switzerland, 41 79 556 67 53, kevin.selby@unisante.ch %K decision aid %K smoking cessation %K electronic tool %K shared decision-making %D 2022 %7 20.4.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Smoking cessation is an essential part of preventing and reducing the risk of smoking-associated morbidity and mortality. However, there is often little time to discuss smoking cessation in primary care. Decision aids (DAs) designed for clinic visits (encounter DAs) need to be clear, short, and concise to optimize therapeutic education, increase interaction, and improve the therapeutic alliance. Such a DA for smoking cessation could potentially improve counseling and increase the use of pharmacological treatments. Objective: We aimed to collect feedback on an electronic encounter DA that facilitates physician-patient interaction and shared decision-making for smoking cessation in primary care. Methods: We developed an electronic, encounter DA (howtoquit.ch) from a paper version created by our team in 2017 following user-centered design principles. The DA is a 1-page interactive website presenting and comparing medications for tobacco cessation and electronic cigarettes. Each smoking cessation medication has a drop down menu that presents additional information, a video demonstration, and prescribing information for physicians. To test the DA, we submitted a questionnaire to approximately 20 general practitioner residents of an academic general medicine department, 5 general practitioners, and 6 experts in the field of smoking cessation. The questionnaire consisted of 4 multiple-choice and 2 free-text questions assessing the usability or acceptability of the DA, the acquisition of new knowledge for practitioners, the perceived utility in supporting shared decision-making, perceived strengths and weaknesses, and whether the participants would recommend the tool to other clinicians. Results: In all, 6 residents, 3 general practitioners in private practice, and 2 tobacco cessation experts completed the questionnaire (N=11), with 4 additional experts providing open-text feedback. On the 11 questionnaires, the DA was rated as practical and intuitive (mean 4.6/5), and providers felt it supported shared decision-making (mean 4.4/5), as comparisons were readily possible. Inclusion of explanatory videos was seen as a bonus. Several changes were suggested, like grouping together similar medications and adding a landing page to briefly explain the site. Changes were implemented according to end-user comments. Conclusions: The overall assessment of the encounter DA by a group of physicians and experts was positive. The ultimate objective is to have the tool deployed and easily accessible for all to use. %M 35442200 %R 10.2196/32960 %U https://formative.jmir.org/2022/4/e32960 %U https://doi.org/10.2196/32960 %U http://www.ncbi.nlm.nih.gov/pubmed/35442200 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 4 %P e31923 %T Conversational Agents in Health Education: Protocol for a Scoping Review %A Powell,Leigh %A Nizam,Mohammed Zayan %A Nour,Radwa %A Zidoun,Youness %A Sleibi,Randa %A Kaladhara Warrier,Sreelekshmi %A Al Suwaidi,Hanan %A Zary,Nabil %+ Institute for Excellence in Health Professions Education, Mohammed Bin Rashid University of Medicine and Health Sciences, Building 14, Dubai Healthcare City, PO Box 505055, Dubai, United Arab Emirates, 971 585960762, nabil.zary@mbru.ac.ae %K conversational agents %K artificial intelligence chatbots %K chatbots %K health education %K health promotion %K classification %K artificial intelligence assistants %K conversational artificial intelligence %D 2022 %7 19.4.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Conversational agents have the ability to reach people through multiple mediums, including the online space, mobile phones, and hardware devices like Alexa and Google Home. Conversational agents provide an engaging method of interaction while making information easier to access. Their emergence into areas related to public health and health education is perhaps unsurprising. While the building of conversational agents is getting more simplified with time, there are still requirements of time and effort. There is also a lack of clarity and consistent terminology regarding what constitutes a conversational agent, how these agents are developed, and the kinds of resources that are needed to develop and sustain them. This lack of clarity creates a daunting task for those seeking to build conversational agents for health education initiatives. Objective: This scoping review aims to identify literature that reports on the design and implementation of conversational agents to promote and educate the public on matters related to health. We will categorize conversational agents in health education in alignment with current classifications and terminology emerging from the marketplace. We will clearly define the variety levels of conversational agents, categorize currently existing agents within these levels, and describe the development models, tools, and resources being used to build conversational agents for health care education purposes. Methods: This scoping review will be conducted by employing the Arksey and O’Malley framework. We will also be adhering to the enhancements and updates proposed by Levac et al and Peters et al. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews will guide the reporting of this scoping review. A systematic search for published and grey literature will be undertaken from the following databases: (1) PubMed, (2) PsychINFO, (3) Embase, (4) Web of Science, (5) SCOPUS, (6) CINAHL, (7) ERIC, (8) MEDLINE, and (9) Google Scholar. Data charting will be done using a structured format. Results: Initial searches of the databases retrieved 1305 results. The results will be presented in the final scoping review in a narrative and illustrative manner. Conclusions: This scoping review will report on conversational agents being used in health education today, and will include categorization of the levels of the agents and report on the kinds of tools, resources, and design and development methods used. International Registered Report Identifier (IRRID): DERR1-10.2196/31923 %M 35258006 %R 10.2196/31923 %U https://www.researchprotocols.org/2022/4/e31923 %U https://doi.org/10.2196/31923 %U http://www.ncbi.nlm.nih.gov/pubmed/35258006 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 8 %N 4 %P e33733 %T Interactive Versus Static Decision Support Tools for COVID-19: Randomized Controlled Trial %A Röbbelen,Alice %A Schmieding,Malte L %A Kopka,Marvin %A Balzer,Felix %A Feufel,Markus A %+ Institute of Medical Informatics, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitéplatz 1, Berlin, 10117, Germany, 49 30 450 570 425, malte.schmieding@charite.de %K clinical decision support %K usability %K COVID-19 %K consumer health %K medical informatic %K symptom checker %K decision support %K symptom %K support %K decision making %K algorithm %K flowchart %K agent %D 2022 %7 15.4.2022 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: During the COVID-19 pandemic, medical laypersons with symptoms indicative of a COVID-19 infection commonly sought guidance on whether and where to find medical care. Numerous web-based decision support tools (DSTs) have been developed, both by public and commercial stakeholders, to assist their decision making. Though most of the DSTs’ underlying algorithms are similar and simple decision trees, their mode of presentation differs: some DSTs present a static flowchart, while others are designed as a conversational agent, guiding the user through the decision tree’s nodes step-by-step in an interactive manner. Objective: This study aims to investigate whether interactive DSTs provide greater decision support than noninteractive (ie, static) flowcharts. Methods: We developed mock interfaces for 2 DSTs (1 static, 1 interactive), mimicking patient-facing, freely available DSTs for COVID-19-related self-assessment. Their underlying algorithm was identical and based on the Centers for Disease Control and Prevention’s guidelines. We recruited adult US residents online in November 2020. Participants appraised the appropriate social and care-seeking behavior for 7 fictitious descriptions of patients (case vignettes). Participants in the experimental groups received either the static or the interactive mock DST as support, while the control group appraised the case vignettes unsupported. We determined participants’ accuracy, decision certainty (after deciding), and mental effort to measure the quality of decision support. Participants’ ratings of the DSTs’ usefulness, ease of use, trust, and future intention to use the tools served as measures to analyze differences in participants’ perception of the tools. We used ANOVAs and t tests to assess statistical significance. Results: Our survey yielded 196 responses. The mean number of correct assessments was higher in the intervention groups (interactive DST group: mean 11.71, SD 2.37; static DST group: mean 11.45, SD 2.48) than in the control group (mean 10.17, SD 2.00). Decisional certainty was significantly higher in the experimental groups (interactive DST group: mean 80.7%, SD 14.1%; static DST group: mean 80.5%, SD 15.8%) compared to the control group (mean 65.8%, SD 20.8%). The differences in these measures proved statistically significant in t tests comparing each intervention group with the control group (P<.001 for all 4 t tests). ANOVA detected no significant differences regarding mental effort between the 3 study groups. Differences between the 2 intervention groups were of small effect sizes and nonsignificant for all 3 measures of the quality of decision support and most measures of participants’ perception of the DSTs. Conclusions: When the decision space is limited, as is the case in common COVID-19 self-assessment DSTs, static flowcharts might prove as beneficial in enhancing decision quality as interactive tools. Given that static flowcharts reveal the underlying decision algorithm more transparently and require less effort to develop, they might prove more efficient in providing guidance to the public. Further research should validate our findings on different use cases, elaborate on the trade-off between transparency and convenience in DSTs, and investigate whether subgroups of users benefit more with 1 type of user interface than the other. Trial Registration: Deutsches Register Klinischer Studien DRKS00028136; https://tinyurl.com/4bcfausx (retrospectively registered) %M 34882571 %R 10.2196/33733 %U https://publichealth.jmir.org/2022/4/e33733 %U https://doi.org/10.2196/33733 %U http://www.ncbi.nlm.nih.gov/pubmed/34882571 %0 Journal Article %@ 2561-1011 %I JMIR Publications %V 6 %N 1 %P e34142 %T The Impact of Health Literacy–Sensitive Design and Heart Age in a Cardiovascular Disease Prevention Decision Aid: Randomized Controlled Trial and End-User Testing %A Bonner,Carissa %A Batcup,Carys %A Ayre,Julie %A Cvejic,Erin %A Trevena,Lyndal %A McCaffery,Kirsten %A Doust,Jenny %+ School of Public Health, Faculty of Medicine and Health, University of Sydney, Rm 128A, Edward Ford Building A27, Sydney, 2006, Australia, 61 293517125, carissa.bonner@sydney.edu.au %K decision aids %K shared decision-making %K risk communication %K heart age %K cardiovascular disease prevention %K behavior change %K health literacy %D 2022 %7 15.4.2022 %9 Original Paper %J JMIR Cardio %G English %X Background: Shared decision-making is an essential principle for the prevention of cardiovascular disease (CVD), where asymptomatic people consider lifelong medication and lifestyle changes. Objective: This study aims to develop and evaluate the first literacy-sensitive CVD prevention decision aid (DA) developed for people with low health literacy, and investigate the impact of literacy-sensitive design and heart age. Methods: We developed a standard DA based on international standards. The standard DA was based on our existing general practitioner DA. The literacy-sensitive DA included simple language, supporting images, white space, and a lifestyle action plan. The control DA used Heart Foundation materials. A randomized trial included 859 people aged 45-74 years using a 3 (DA: standard, literacy-sensitive, control) ×2 (heart age: heart age + percentage risk, percentage risk only) factorial design, with outcomes including prevention intentions and behaviors, gist and verbatim knowledge of risk, credibility, emotional response, and decisional conflict. We iteratively improved the literacy-sensitive version based on end-user testing interviews with 20 people with varying health literacy levels. Results: Immediately after the intervention (n=859), there were no differences in any outcome among the DA groups. The heart age group was less likely to have a positive emotional response, perceived the message as less credible, and had higher gist and verbatim knowledge of heart age risk but not percentage risk. After 4 weeks (n=596), the DA group had better gist knowledge of percentage risk than the control group. The literacy-sensitive DA group had higher fruit consumption, and the standard DA group had better verbatim knowledge of percentage risk. Verbatim knowledge was higher for heart age than for percentage risk among those who received both. Conclusions: The literacy-sensitive DA resulted in increased knowledge of CVD risk and increased fruit consumption in participants with varying health literacy levels and CVD risk results. Adding heart age did not increase lifestyle change intentions or behavior but did affect psychological outcomes, consistent with previous findings. This tool will be integrated with additional resources to improve other lifestyle outcomes. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12620000806965; https://tinyurl.com/226yhk8a %M 35436208 %R 10.2196/34142 %U https://cardio.jmir.org/2022/1/e34142 %U https://doi.org/10.2196/34142 %U http://www.ncbi.nlm.nih.gov/pubmed/35436208 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 4 %P e34738 %T Feasibility of a Digital Patient–Provider Communication Intervention to Support Shared Decision-Making in Chronic Health Care, InvolveMe: Pilot Study %A Seljelid,Berit %A Varsi,Cecilie %A Solberg Nes,Lise %A Øystese,Kristin Astrid %A Børøsund,Elin %+ Department of Digital Health Research, Division of Medicine, Oslo University Hospital, PB. 4950 Nydalen, Oslo, 0424, Norway, 47 92667161, elin.borosund@rr-research.no %K digital assessment %K secure messages %K patient portal %K remote shared decision-making %K chronic health conditions %K assessment %K portal %K decision-making %K chronic condition %K chronic %K communication %K intervention %K feasibility %K pilot %K acceptability %K usage %K demand %K patient-reported outcome measures %K PROM %K outcome %D 2022 %7 7.4.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Enhanced communication with health care providers (HCPs) can improve symptom management and health-related quality of life (HRQoL) for patients with chronic health conditions. Access to appropriate communication venues is needed to improve communication, however. As such, digital communication interventions mediated by patient portals carry the potential to support patient-provider communication and interaction and through this, also facilitate shared decision-making (SDM). The InvolveMe intervention was designed to provide patients with the opportunity to communicate symptoms and informational needs prior to consultation via digital assessment, including prioritizing what is most important to discuss with their HCPs, as well as to interact with HCPs through secure messages between outpatient visits. Objective: The aim of this study was to assess the feasibility of the InvolveMe intervention by investigating acceptability, demand (ie, system use), and limited efficacy. Methods: The study was designed as a single-arm, pre-post feasibility study combining quantitative and qualitative methods for data collection. Patients from an endocrine outpatient clinic were invited to use the InvolveMe intervention for 3 months, and HCPs administering InvolveMe were invited to participate in a focus group. Guided by descriptions of how to design feasibility studies by Bowen et al, feasibility was tested by exploring (1) acceptability, using data collected during recruitment from patient participants and nonparticipants (ie, declined to participate or did not meet study requirements), HCP experiences with recruitment, and the System Usability Scale (SUS); (2) demand via exploration of system use through extraction of system log data and HCP experiences with system use; and (3) limited efficacy testing, via exploration of potential effects from the Short-Form Health Survey (RAND 36), Hospital Anxiety and Depression Scale, and Health Literacy Questionnaire. Results: Patient participants (N=23) were a median 54 (range 26-78) years old and primarily male (14/23, 61%). Nonparticipants (N=16) were a median 73 (range 55-80) years old and primarily male (12/16, 75%). The average SUS score was 72.2, indicating good system usability. Assessments were completed by 8 participants from home prior to outpatient visits. The assessments entailed various bodily symptoms and needs for information. Participants sent 17 secure messages related to patient administrative matters, symptoms, and challenges. Focus group participants (N=4) were all female and registered nurses. Data were analyzed in 2 predefined themes: Acceptability and Demand. Acceptability included the subthemes intervention attractiveness and intervention suitability. Demand included the subthemes elements of SDM and intervention challenges and opportunities. All patient participants completed outcome measures at baseline, and 19 (19/23, 83%) completed outcome measures at 3 months. These preliminary efficacy findings were mixed and inconclusive. Conclusions: The study design provided findings from both patient and HCP perspectives and supported feasibility of the InvolveMe intervention. The investigation of acceptability and demand supported the potential for remote SDM mediated by patient portals using assessments and secure messages. Trial Registration: ClinicalTrials.gov NCT NCT04218721; https://www.clinicaltrials.gov/ct2/show/NCT04218721 %M 35389356 %R 10.2196/34738 %U https://formative.jmir.org/2022/4/e34738 %U https://doi.org/10.2196/34738 %U http://www.ncbi.nlm.nih.gov/pubmed/35389356 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 4 %P e35543 %T Effectiveness of Individual Feedback and Coaching on Shared Decision-making Consultations in Oncology Care: Protocol for a Randomized Clinical Trial %A van Veenendaal,Haske %A Peters,Loes J %A Ubbink,Dirk T %A Stubenrouch,Fabienne E %A Stiggelbout,Anne M %A Brand,Paul LP %A Vreugdenhil,Gerard %A Hilders,Carina GJM %+ Erasmus School of Health Policy and Management, Erasmus University Rotterdam, P.O. Box 1738, Rotterdam, 3000 DR, Netherlands, 31 651952029, haskevanveenendaal@gmail.com %K decision-making %K shared %K education %K professional %K feedback learning %K coaching %K medical consultation %K medical oncology %K palliative care %D 2022 %7 6.4.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Shared decision-making (SDM) is particularly important in oncology as many treatments involve serious side effects, and treatment decisions involve a trade-off between benefits and risks. However, the implementation of SDM in oncology care is challenging, and clinicians state that it is difficult to apply SDM in their actual workplace. Training clinicians is known to be an effective means of improving SDM but is considered time consuming. Objective: This study aims to address the effectiveness of an individual SDM training program using the concept of deliberate practice. Methods: This multicenter, single-blinded randomized clinical trial will be performed at 12 Dutch hospitals. Clinicians involved in decisions with oncology patients will be invited to participate in the study and allocated to the control or intervention group. All clinicians will record 3 decision-making processes with 3 different oncology patients. Clinicians in the intervention group will receive the following SDM intervention: completing e-learning, reflecting on feedback reports, performing a self-assessment and defining 1 to 3 personal learning questions, and participating in face-to-face coaching. Clinicians in the control group will not receive the SDM intervention until the end of the study. The primary outcome will be the extent to which clinicians involve their patients in the decision-making process, as scored using the Observing Patient Involvement–5 instrument. As secondary outcomes, patients will rate their perceived involvement in decision-making, and the duration of the consultations will be registered. All participating clinicians and their patients will receive information about the study and complete an informed consent form beforehand. Results: This trial was retrospectively registered on August 03, 2021. Approval for the study was obtained from the ethical review board (medical research ethics committee Delft and Leiden, the Netherlands [N20.170]). Recruitment and data collection procedures are ongoing and are expected to be completed by July 2022; we plan to complete data analyses by December 2022. As of February 2022, a total of 12 hospitals have been recruited to participate in the study, and 30 clinicians have started the SDM training program. Conclusions: This theory-based and blended approach will increase our knowledge of effective and feasible training methods for clinicians in the field of SDM. The intervention will be tailored to the context of individual clinicians and will target the knowledge, attitude, and skills of clinicians. The patients will also be involved in the design and implementation of the study. Trial Registration: Netherlands Trial Registry NL9647; https://www.trialregister.nl/trial/9647 International Registered Report Identifier (IRRID): DERR1-10.2196/35543 %M 35383572 %R 10.2196/35543 %U https://www.researchprotocols.org/2022/4/e35543 %U https://doi.org/10.2196/35543 %U http://www.ncbi.nlm.nih.gov/pubmed/35383572 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 4 %P e22124 %T The Efficacy of Health Information Technology in Supporting Health Equity for Black and Hispanic Patients With Chronic Diseases: Systematic Review %A Senteio,Charles %A Murdock,Paul Joseph %+ Department of Library and Information Science, School of Communication and Information, Rutgers University, 4 Huntington St, New Brunswick, NJ, 08901-1071, United States, 1 8489327586, charles.senteio@rutgers.edu %K chronic disease %K minority health %K technology assessment %K biomedical %K self-management %K systematic review %K mobile phone %D 2022 %7 4.4.2022 %9 Review %J J Med Internet Res %G English %X Background: Racial inequity persists for chronic disease outcomes amid the proliferation of health information technology (HIT) designed to support patients in following recommended chronic disease self-management behaviors (ie, medication behavior, physical activity, and dietary behavior and attending follow-up appointments). Numerous interventions that use consumer-oriented HIT to support self-management have been evaluated, and some of the related literature has focused on racial minorities who experience disparate chronic disease outcomes. However, little is known about the efficacy of these interventions. Objective: This study aims to conduct a systematic review of the literature that describes the efficacy of consumer-oriented HIT interventions designed to support self-management involving African American and Hispanic patients with chronic diseases. Methods: We followed an a priori protocol using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses)-Equity 2012 Extension guidelines for systematic reviews that focus on health equity. Themes of interest included the inclusion and exclusion criteria. We identified 7 electronic databases, created search strings, and conducted the searches. We initially screened results based on titles and abstracts and then performed full-text screening. We then resolved conflicts and extracted relevant data from the included articles. Results: In total, there were 27 included articles. The mean sample size was 640 (SD 209.5), and 52% (14/27) of the articles focused on African American participants, 15% (4/27) of the articles focused on Hispanic participants, and 33% (9/27) included both. Most articles addressed 3 of the 4 self-management behaviors: medication (17/27, 63%), physical activity (17/27, 63%), and diet (16/27, 59%). Only 15% (4/27) of the studies focused on follow-up appointment attendance. All the articles investigated HIT for use at home, whereas 7% (2/27) included use in the hospital. Conclusions: This study addresses a key gap in research that has not sufficiently examined what technology designs and capabilities may be effective for underserved populations in promoting health behavior in concordance with recommendations. %M 35377331 %R 10.2196/22124 %U https://www.jmir.org/2022/4/e22124 %U https://doi.org/10.2196/22124 %U http://www.ncbi.nlm.nih.gov/pubmed/35377331 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 4 %P e28983 %T Reducing Inappropriate Urinary Catheter Use by Involving Patients Through the Participatient App: Before-and-After Study %A Bentvelsen,Robbert G %A Bruijning,Marguerite L %A Chavannes,Niels H %A Veldkamp,Karin Ellen %+ Department of Medical Microbiology, Leiden University Medical Center, Leiden University, E4-P, PO Box 9600, Leiden, 2300 RC, Netherlands, 31 715261652, rbentvelsen@gmail.com %K infection control %K catheter-associated urinary tract infections %K urinary catheter %K patient empowerment %K catheter %K urology %K infection %K urinary tract infection %K smartphone app %K surgical nursing %D 2022 %7 4.4.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: The risk of urinary tract infections is increased by the inappropriate placement and unnecessary prolongation of the use of indwelling urinary catheters. Sustained behavior change in infection prevention could be promoted by empowering patients through a smartphone app. Objective: The aim of this study is to assess the feasibility and efficacy of implementation actions on patients’ use of the Participatient app on a clinical ward and to compare 3 survey methods for urinary catheter use. Methods: Participatient was introduced for all admitted patients at the surgical nursing ward in a university hospital in the Netherlands. Over a period of 3 months, the number of new app users, days of use, and sessions were recorded. In a comparison of urinary catheter use before and after the implementation of the app, 3 methods for point prevalence surveys of catheter use were tested. Surveys were conducted through manual parsing of the text in patients’ electronic medical records, parsing a survey of checkbox items, and parsing nursing notes. Results: In all, 475 patients were admitted to the ward, 42 (8.8%) installed the app, with 1 to 5 new users per week. The actions with the most ensuing app use were the kick-off with the clinical lesson and recruiting of the intake nurse. Between the survey methods, there was considerable variation in catheter use prevalence. Therefore, we used the standard method of manual parsing in further analyses. Catheter use prevalence decreased from 38% (36/96) to 27% (23/86) after app introduction (OR 0.61, 95% CI 0.32-1.14). Conclusions: The clinical application of Participatient, the infection prevention app for patients, could be feasible when implementation actions are also used. For surveying indwelling urinary catheter use prevalence, manual parsing is the best approach. %M 35377323 %R 10.2196/28983 %U https://formative.jmir.org/2022/4/e28983 %U https://doi.org/10.2196/28983 %U http://www.ncbi.nlm.nih.gov/pubmed/35377323 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 2 %P e32399 %T Implementation of a Web-Based Tool for Shared Decision-making in Lung Cancer Screening: Mixed Methods Quality Improvement Evaluation %A Lowery,Julie %A Fagerlin,Angela %A Larkin,Angela R %A Wiener,Renda S %A Skurla,Sarah E %A Caverly,Tanner J %+ Center for Clinical Management Research, Ann Arbor VA Healthcare System, 2215 Fuller Road, Ann Arbor, MI, 48105, United States, 1 303 587 1038, tcaverly@med.umich.edu %K shared decision-making %K lung cancer %K screening %K clinical decision support %K academic detailing %K quality improvement %K implementation %D 2022 %7 1.4.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Lung cancer risk and life expectancy vary substantially across patients eligible for low-dose computed tomography lung cancer screening (LCS), which has important consequences for optimizing LCS decisions for different patients. To account for this heterogeneity during decision-making, web-based decision support tools are needed to enable quick calculations and streamline the process of obtaining individualized information that more accurately informs patient-clinician LCS discussions. We created DecisionPrecision, a clinician-facing web-based decision support tool, to help tailor the LCS discussion to a patient’s individualized lung cancer risk and estimated net benefit. Objective: The objective of our study is to test two strategies for implementing DecisionPrecision in primary care at eight Veterans Affairs medical centers: a quality improvement (QI) training approach and academic detailing (AD). Methods: Phase 1 comprised a multisite, cluster randomized trial comparing the effectiveness of standard implementation (adding a link to DecisionPrecision in the electronic health record vs standard implementation plus the Learn, Engage, Act, and Process [LEAP] QI training program). The primary outcome measure was the use of DecisionPrecision at each site before versus after LEAP QI training. The second phase of the study examined the potential effectiveness of AD as an implementation strategy for DecisionPrecision at all 8 medical centers. Outcomes were assessed by comparing absolute tool use before and after AD visits and conducting semistructured interviews with a subset of primary care physicians (PCPs) following the AD visits. Results: Phase 1 findings showed that sites that participated in the LEAP QI training program used DecisionPrecision significantly more often than the standard implementation sites (tool used 190.3, SD 174.8 times on average over 6 months at LEAP sites vs 3.5 SD 3.7 at standard sites; P<.001). However, this finding was confounded by the lack of screening coordinators at standard implementation sites. In phase 2, there was no difference in the 6-month tool use between before and after AD (95% CI −5.06 to 6.40; P=.82). Follow-up interviews with PCPs indicated that the AD strategy increased provider awareness and appreciation for the benefits of the tool. However, other priorities and limited time prevented PCPs from using them during routine clinical visits. Conclusions: The phase 1 findings did not provide conclusive evidence of the benefit of a QI training approach for implementing a decision support tool for LCS among PCPs. In addition, phase 2 findings showed that our light-touch, single-visit AD strategy did not increase tool use. To enable tool use by PCPs, prediction-based tools must be fully automated and integrated into electronic health records, thereby helping providers personalize LCS discussions among their many competing demands. PCPs also need more time to engage in shared decision-making discussions with their patients. Trial Registration: ClinicalTrials.gov NCT02765412; https://clinicaltrials.gov/ct2/show/NCT02765412 %M 35363144 %R 10.2196/32399 %U https://humanfactors.jmir.org/2022/2/e32399 %U https://doi.org/10.2196/32399 %U http://www.ncbi.nlm.nih.gov/pubmed/35363144 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 3 %P e34544 %T The Evaluation of a Social Media Campaign to Increase COVID-19 Testing in Migrant Groups: Cluster Randomized Trial %A Elgersma,Ingeborg Hess %A Fretheim,Atle %A Indseth,Thor %A Munch,Anita Thorolvsen %A Johannessen,Live Bøe %A Hansen,Christine Engh %+ Centre for Epidemic Interventions Research, Norwegian Institute of Public Health, Postboks 222, Skøyen, Oslo, 0213, Norway, 47 91584782, ingeborghess.elgersma@fhi.no %K COVID-19 %K SARS-CoV-2 %K social media %K campaign %K cluster randomized trial %K nonpharmaceutical interventions %K migrant %K intervention %K testing %K strategy %K public health %K Facebook %K communication %D 2022 %7 24.3.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: A low test positivity rate is key to keeping the COVID-19 pandemic under control. Throughout the pandemic, several migrant groups in Norway have seen higher rates of confirmed COVID-19 and related hospitalizations, while test positivity has remained high in the same groups. The Norwegian government has used several platforms for communication, and targeted social media advertisements have in particular been an important part of the communication strategy to reach these groups. Objective: In this study, we aimed to investigate whether such a targeted Facebook campaign increased the rate of COVID-19 tests performed in certain migrant groups. Methods: We randomly assigned 386 Norwegian municipalities and city districts to intervention or control groups. Individuals born in Eritrea, Iraq, Pakistan, Poland, Russia, Somalia, Syria, and Turkey residing in intervention areas were targeted with a social media campaign aiming at increasing the COVID-19 test rate. The campaign message was in a simple language and conveyed in the users’ main language or in English. Results: During the 2-week follow-up period, the predicted probability of having a COVID-19 test taken was 4.82% (95% CI 4.47%-5.18%) in the control group, and 5.58% (95% CI 5.20%-5.99%) in the intervention group (P=.004). Conclusions: Our targeted social media intervention led to a modest increase in test rates among certain migrant groups in Norway. Trial Registration: ClinicalTrials.gov NCT04866589; https://clinicaltrials.gov/ct2/show/NCT04866589 %M 35285811 %R 10.2196/34544 %U https://www.jmir.org/2022/3/e34544 %U https://doi.org/10.2196/34544 %U http://www.ncbi.nlm.nih.gov/pubmed/35285811 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e25005 %T Web-Based Patient Educational Material on Osteosarcoma: Quantitative Assessment of Readability and Understandability %A Gulbrandsen,Trevor Robert %A Skalitzky,Mary Kate %A Shamrock,Alan Gregory %A Gao,Burke %A Hasan,Obada %A Miller,Benjamin James %+ Department of Orthopaedics and Rehabilitation, University of Iowa Hospitals and Clinics, 200 Hawkins Dr, Iowa City, IA, 52242, United States, 1 435 659 4221, trevor-gulbrandsen@uiowa.edu %K osteosarcoma %K patient education %K health literacy %K web-based health information %D 2022 %7 24.3.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Patients often turn to web-based resources following the diagnosis of osteosarcoma. To be fully understood by average American adults, the American Medical Association (AMA) and National Institutes of Health (NIH) recommend web-based health information to be written at a 6th grade level or lower. Previous analyses of osteosarcoma resources have not measured whether text is written such that readers can process key information (understandability) or identify available actions to take (actionability). The Patient Education Materials Assessment Tool (PEMAT) is a validated measurement of understandability and actionability. Objective: The purpose of this study was to evaluate web-based osteosarcoma resources using measures of readability, understandability, and actionability. Methods: Using the search term “osteosarcoma,” two independent Google searches were performed on March 7, 2020 (by AGS), and March 11, 2020 (by TRG). The top 50 results were collected. Websites were included if they were directed at providing patient education on osteosarcoma. Readability was quantified using validated algorithms: Flesh-Kincaid Grade Ease (FKGE), Flesch-Kincaid Grade-Level (FKGL). A higher FKGE score indicates that the material is easier to read. All other readability scores represent the US school grade level. Two independent PEMAT assessments were performed with independent scores assigned for both understandability and actionability. A PEMAT score of 70% or below is considered poorly understandable or poorly actionable. Statistical significance was defined as P≤.05. Results: Two searches yielded 53 unique websites, of which 37 (70%) met the inclusion criteria. The mean FKGE and FKGL scores were 40.8 (SD 13.6) and 12.0 (SD 2.4), respectively. No website scored within the acceptable NIH or AHA recommended reading level. Only 4 (11%) and 1 (3%) website met the acceptable understandability and actionability threshold. Both understandability and actionability were positively correlated with FKGE (ρ=0.55, P<.001; ρ=0.60, P<.001), but were otherwise not significantly associated with other readability scores. There were no associations between readability (P=.15), understandability (P=.20), or actionability (P=.31) scores and Google rank. Conclusions: Overall, web-based osteosarcoma patient educational materials scored poorly with respect to readability, understandability, and actionability. None of the web-based resources scored at the recommended reading level. Only 4 achieved the appropriate score to be considered understandable by the general public. Authors of patient resources should incorporate PEMAT and readability criteria to improve web-based resources to support patient understanding. %M 35323117 %R 10.2196/25005 %U https://cancer.jmir.org/2022/1/e25005 %U https://doi.org/10.2196/25005 %U http://www.ncbi.nlm.nih.gov/pubmed/35323117 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 3 %P e26122 %T Reversing the Antibiotic Resistance “Yelp Effect” Through the Use of Emotionally Framed Responses to Negative Reviews of Providers: Questionnaire Study %A Turner,Monique Mitchell %A Choung,Hyesun %A Bui,Quoc-Ha Hannah Mai %A Beck,Paige %A Ashraf,Hera %+ Milken Institute School of Public Health, George Washington University, 950 New Hampshire Ave NW, Washington, DC, 20052, United States, 1 202 994 7400, hmbui@gwu.edu %K online patient review %K antimicrobial resistance %K emotion %K health communication %D 2022 %7 22.3.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: The overuse of antibiotics has rapidly made antimicrobial resistance a global public health challenge. There is an emerging trend where providers who perceive that their patients expect antibiotics are more likely to prescribe antibiotics unprompted or upon request. Particularly, health care providers have expressed concern that dissatisfied patients will provide disparaging online reviews, therefore threatening the reputation of the practice. To better deal with the negative reviews and inform patients, some health care staff directly respond to patients’ online feedback. Engaging with patients’ online reviews gives providers an opportunity to prevent reputational damage and improve patients’ understanding of the antibiotic resistance problem. Objective: We aim to test the effectiveness of different response strategies to the negative patient online reviews on the readers’ perceptions of the health care provider and their perceptions related to antibiotics resistance. Methods: Two experiments were conducted to examine the impact of message tactics (apologizing, inducing fear or guilt) that can be employed by health care providers when responding to patients’ negative online feedback related to not receiving an antibiotic. Results: Overall, our results demonstrated positive impacts of responding to patients’ online reviews. In study 1, we found apologetic messaging and use of emotional appeals in the response were effective in making readers feel more favorable toward the message. Readers also expressed a greater credibility perception toward the provider and willingness to visit the clinic when emotional appeals were used. Findings from study 2 largely supported the effectiveness of a fear-based response in improving the readers’ credibility perceptions and willingness to visit the clinic. The fear-inducing information was particularly effective among parent readers. Conclusions: This paper demonstrated that a strategic response to online patient complaints could prevent reputational damage and minimize the potential negative impacts of the review. The results also glean insight into the step toward developing a novel intervention—crafting a persuasive response to patients’ negative feedback that can help improve the understanding of antibiotic resistance problems. %M 35315787 %R 10.2196/26122 %U https://formative.jmir.org/2022/3/e26122 %U https://doi.org/10.2196/26122 %U http://www.ncbi.nlm.nih.gov/pubmed/35315787 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 3 %P e27890 %T Demographic and Psychosocial Characteristics Associated With Use of a Prostate Cancer Survivorship Website: Implications From a Multisite Randomized Controlled Trial %A Marziliano,Allison %A Diefenbach,Michael A %A Hudson,Shawna V %A Tagai,Erin K %A Handorf,Elizabeth A %A Bator,Alicja %A Miller,Suzanne M %+ Cancer Prevention and Control, Fox Chase Cancer Center/Temple University Health System, 333 Cottman Avenue, Philadelphia, PA, 19111, United States, 1 1 215 728 4069, Suzanne.Miller@fccc.edu %K prostate cancer %K cancer survivorship %K web-based resource %K monitoring style of coping %K cancer %K survivorship %K eHealth %K emotions %K interpersonal %D 2022 %7 21.3.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Many prostate cancer (PC) survivors experience disease and treatment-related symptomatology in both the physical and psychosocial domains. Although the benefits and barriers to using web-based resources for cancer patients are well-documented, less research has focused on the personal characteristics important for efficient tailoring and targeting of information that are associated with usage. Objective: We used the Cognitive-Social Health Information Processing (C-SHIP) framework to guide our exploration of personal characteristics associated with use of PROGRESS, an informational PC survivorship website that addresses physical, emotional, interpersonal, and practical concerns relevant for PC survivors. Methods: PC survivors (N=217) were randomized to the intervention arm (PROGRESS) of a randomized controlled trial. Of those randomized to the intervention arm, 84 used PROGRESS, and 133 did not use PROGRESS. Multivariable analyses evaluated demographic and psychosocial characteristics (eg, style of coping, health literacy, self-efficacy, affective states of depression, anxiety, and fatigue) associated with website use. Results: A larger proportion of non-Hispanic White (68/160, 42.5%), compared with non-Hispanic Black (9/40, 23%), participants used PROGRESS (P<.001). Further, PROGRESS users were older in age (P<.001), had a monitoring style of coping (P=.01), and were less depressed (P=.004), anxious (P=.02), and fatigued (P<.001) than nonusers. Education, income, health literacy, blunting style of coping, self-efficacy, and treatment type (radiation therapy or surgery) were not significantly related to use. On multivariable analyses, race (OR 0.28, P<.001), age (OR 1.05, P<.001), monitoring style of coping (OR 1.27, P=.02), and overall mood (OR 0.98, P<.001) remained significant. Conclusions: A combination of monitoring and low levels of negative affect were associated with website use. Additionally, users were older, non-Hispanic White survivors. To ensure that important survivorship-relevant information reaches users, future efforts need to focus on enhancing patient engagement. Trial Registration: ClinicalTrials.gov NCT02224482; https://clinicaltrials.gov/ct2/show/NCT02224482 %M 35311678 %R 10.2196/27890 %U https://www.jmir.org/2022/3/e27890 %U https://doi.org/10.2196/27890 %U http://www.ncbi.nlm.nih.gov/pubmed/35311678 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 3 %P e27588 %T Effectiveness, Cost-effectiveness, and Cost-Utility of a Digital Smoking Cessation Intervention for Cancer Survivors: Health Economic Evaluation and Outcomes of a Pragmatic Randomized Controlled Trial %A Mujcic,Ajla %A Blankers,Matthijs %A Boon,Brigitte %A Verdonck-de Leeuw,Irma M %A Smit,Filip %A van Laar,Margriet %A Engels,Rutger %+ Erasmus School of Social and Behavioural Sciences, Erasmus University, Burgemeester Oudlaan 50, Rotterdam, 3062PA, Netherlands, 31 30 29 59 256, amujcic@trimbos.nl %K smoking cessation %K cancer survivors %K effectiveness %K cost-effectiveness %K eHealth %D 2022 %7 17.3.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Smoking cessation (SC) interventions may contribute to better treatment outcomes and the general well-being of cancer survivors. Objective: This study aims to evaluate the effectiveness, cost-effectiveness, and cost-utility of a digital interactive SC intervention compared with a noninteractive web-based information brochure for cancer survivors. Methods: A health economic evaluation alongside a pragmatic 2-arm parallel-group randomized controlled trial was conducted with follow-ups at 3, 6, and 12 months. The study was conducted in the Netherlands over the internet from November 2016 to September 2019. The participants were Dutch adult smoking cancer survivors with the intention to quit smoking. In total, 165 participants were included and analyzed: 83 (50.3%) in the MyCourse group and 82 (49.7%) in the control group. In the intervention group, participants had access to a newly developed, digital, minimally guided SC intervention (MyCourse-Quit Smoking). Control group participants received a noninteractive web-based information brochure on SC. Both groups received unrestricted access to usual care. The primary outcome was self-reported 7-day smoking abstinence at the 6-month follow-up. Secondary outcomes were quality-adjusted life years gained, number of cigarettes smoked, nicotine dependence, and treatment satisfaction. For the health economic evaluation, intervention costs, health care costs, and costs stemming from productivity losses were assessed over a 12-month horizon. Results: At the 6-month follow-up, the quit rates were 28% (23/83) and 26% (21/82) in the MyCourse and control groups, respectively (odds ratio 0.47, 95% CI 0.03-7.86; P=.60). In both groups, nicotine dependence scores were reduced at 12 months, and the number of smoked cigarettes was reduced by approximately half. The number of cigarettes decreased more over time, and the MyCourse group demonstrated a significantly greater reduction at the 12-month follow-up (incidence rate ratio 0.87; 95% CI 0.76-1.00; P=.04). Intervention costs were estimated at US $193 per participant for the MyCourse group and US $74 for the control group. The mean per-participant societal costs were US $25,329 (SD US $29,137) and US $21,836 (SD US $25,792), respectively. In the cost-utility analysis, MyCourse was not preferred over the control group from a societal perspective. With smoking behavior as the outcome, the MyCourse group led to marginally better results per reduced pack-year against higher societal costs, with a mean incremental cost-effectiveness ratio of US $52,067 (95% CI US $32,515-US $81,346). Conclusions: At 6 months, there was no evidence of a differential effect on cessation rates; in both groups, approximately a quarter of the cancer survivors quit smoking and their number of cigarettes smoked was reduced by half. At 12 months, the MyCourse intervention led to a greater reduction in the number of smoked cigarettes, albeit at higher costs than for the control group. No evidence was found for a differential effect on quality-adjusted life years. Trial Registration: The Netherlands Trial Register NTR6011; https://www.trialregister.nl/trial/5434 International Registered Report Identifier (IRRID): RR2-10.1186/s12885-018-4206-z %M 35297777 %R 10.2196/27588 %U https://www.jmir.org/2022/3/e27588 %U https://doi.org/10.2196/27588 %U http://www.ncbi.nlm.nih.gov/pubmed/35297777 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 9 %N 3 %P e25441 %T Usage Intensity of a Relapse Prevention Program and Its Relation to Symptom Severity in Remitted Patients With Anxiety and Depression: Pre-Post Study %A Krijnen-de Bruin,Esther %A Muntingh,Anna DT %A Bourguignon,Evelien M %A Hoogendoorn,Adriaan %A Maarsingh,Otto R %A van Balkom,Anton JLM %A Batelaan,Neeltje M %A van Straten,Annemieke %A van Meijel,Berno %+ Department of Health, Sports and Welfare, Research Group Mental Health Nursing, Inholland University of Applied Sciences, De Boelelaan 1109, Amsterdam, 1081 HV, Netherlands, 31 20 495 1111, esther.krijnendebruin@inholland.nl %K relapse prevention %K anxiety disorder %K depressive disorder %K eHealth %K primary care practice %K usage intensity %K self-management %K mobile phone %D 2022 %7 16.3.2022 %9 Original Paper %J JMIR Ment Health %G English %X Background: Given that relapse is common in patients in remission from anxiety and depressive disorders, relapse prevention is needed in the maintenance phase. Although existing psychological relapse prevention interventions have proven to be effective, they are not explicitly based on patients’ preferences. Hence, we developed a blended relapse prevention program based on patients’ preferences, which was delivered in primary care practices by mental health professionals (MHPs). This program comprises contact with MHPs, completion of core and optional online modules (including a relapse prevention plan), and keeping a mood and anxiety diary in which patients can monitor their symptoms. Objective: The aims of this study were to provide insight into (1) usage intensity of the program (over time), (2) the course of symptoms during the 9 months of the study, and (3) the association between usage intensity and the course of symptoms. Methods: The Guided E-healTh for RElapse prevention in Anxiety and Depression (GET READY) program was guided by 54 MHPs working in primary care practices. Patients in remission from anxiety and depressive disorders were included. Demographic and clinical characteristics, including anxiety and depressive symptoms, were collected via questionnaires at baseline and after 3, 6, and 9 months. Log data were collected to assess the usage intensity of the program. Results: A total of 113 patients participated in the study. Twenty-seven patients (23.9%) met the criteria for the minimal usage intensity measure. The core modules were used by ≥70% of the patients, while the optional modules were used by <40% of the patients. Usage decreased quickly over time. Anxiety and depressive symptoms remained stable across the total sample; a minority of 15% (12/79) of patients experienced a relapse in their anxiety symptoms, while 10% (8/79) experienced a relapse in their depressive symptoms. Generalized estimating equations analysis indicated a significant association between more frequent face-to-face contact with the MHPs and an increase in both anxiety symptoms (β=.84, 95% CI .39-1.29) and depressive symptoms (β=1.12, 95% CI 0.45-1.79). Diary entries and the number of completed modules were not significantly associated with the course of symptoms. Conclusions: Although the core modules of the GET READY program were used by most of the patients and all patients saw an MHP at least once, usage decreased quickly over time. Most patients remained stable while participating in the study. The significant association between the frequency of contact and the course of symptoms most likely indicates that those who received more support had more symptoms, and thus, it is questionable whether the support offered by the program was sufficient to prevent these patients from relapsing. International Registered Report Identifier (IRRID): RR2-10.1186/s12888-019-2034-6 %M 35293876 %R 10.2196/25441 %U https://mental.jmir.org/2022/3/e25441 %U https://doi.org/10.2196/25441 %U http://www.ncbi.nlm.nih.gov/pubmed/35293876 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 3 %P e32678 %T Modeling Access Across the Digital Divide for Intersectional Groups Seeking Web-Based Health Information: National Survey %A Medero,Kristina %A Merrill Jr,Kelly %A Ross,Morgan Quinn %+ School of Communication, Ohio State University, 154 N Oval Mall, Columbus, OH, 43210-1132, United States, 1 5313017556, medero.2@osu.edu %K Black %K African American %K first-level digital divide %K health disparities %K home computer %K internet access %K intersectionality %K Latino %K Latine %K Hispanic %K mobile %K online health information seeking %K public computer %K structural equation modeling %K work computer %K mobile phone %D 2022 %7 15.3.2022 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 35289761 %R 10.2196/32678 %U https://www.jmir.org/2022/3/e32678 %U https://doi.org/10.2196/32678 %U http://www.ncbi.nlm.nih.gov/pubmed/35289761 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 1 %P e29782 %T Designing Digital Health Technology to Support Patients Before and After Bariatric Surgery: Qualitative Study Exploring Patient Desires, Suggestions, and Reflections to Support Lifestyle Behavior Change %A Robinson,Anna %A Husband,Andrew %A Slight,Robert %A Slight,Sarah P %+ School of Pharmacy, Newcastle University, King George VI Building, Newcastle University, Newcastle upon Tyne, NE1 7RU, United Kingdom, 44 191 208 6000, Sarah.slight@newcastle.ac.uk %K digital technology %K eHealth %K mHealth %K bariatric surgery %K behavior change %K qualitative research %K co-design %K perioperative care %K mobile phone %D 2022 %7 4.3.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: A patient’s capability, motivation, and opportunity to change their lifestyle are determinants of successful outcomes following bariatric surgery. Lifestyle changes before and after surgery, including improved dietary intake and physical activity levels, have been associated with greater postsurgical weight loss and improved long-term health. Integrating patient-centered digital technologies within the bariatric surgical pathway could form part of an innovative strategy to promote and sustain healthier behaviors, and provide holistic patient support, to improve surgical success. Previous research focused on implementing digital technologies and measuring effectiveness in surgical cohorts. However, there is limited work concerning the desires, suggestions, and reflections of patients undergoing bariatric surgery. This qualitative investigation explores patients’ perspectives on technology features that would support behavior changes during the pre- and postoperative periods, to potentially maintain long-term healthy lifestyles following surgery. Objective: This study aims to understand how digital technologies can be used to support patient care during the perioperative journey to improve weight loss outcomes and surgical success, focusing on what patients want from digital technologies, how they want to use them, and when they would be of most benefit during their surgical journey. Methods: Patients attending bariatric surgery clinics in one hospital in the North of England were invited to participate. Semistructured interviews were conducted with purposively sampled pre- and postoperative patients to discuss lifestyle changes and the use of digital technologies to complement their care. The interviews were audio recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes from the data. Ethical approval was obtained from the National Health Service Health Research Authority. Results: A total of 20 patients were interviewed (preoperative phase: 40% (8/20); postoperative phase: 60% (12/20). A total of 4 overarching themes were developed and related to the optimization of technology functionality. These centered on providing tailored content and support; facilitating self-monitoring and goal setting; delivering information in an accessible, trusted, and usable manner; and meeting patient information-seeking and engagement needs during the surgical pathway. Functionalities that delivered personalized feedback and postoperative follow-up were considered beneficial. Individualized goal setting functionality could support a generation of digitally engaged patients with bariatric conditions as working toward achievable targets was deemed an effective strategy for motivating behavior change. The creation of digital package of care checklists between patients and clinicians was a novel finding from this study. Conclusions: Perceptions of patients undergoing bariatric surgery validated the integration of digital technologies within the surgical pathway, offering enhanced connectedness and support. Recommendations are made relating to the design, content, and functionality of digital interventions to best address the needs of this cohort. These findings have the potential to influence the co-design and integration of person-centered, perioperative technologies. %M 35254271 %R 10.2196/29782 %U https://humanfactors.jmir.org/2022/1/e29782 %U https://doi.org/10.2196/29782 %U http://www.ncbi.nlm.nih.gov/pubmed/35254271 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 3 %P e29422 %T Patient Influencers: The Next Frontier in Direct-to-Consumer Pharmaceutical Marketing %A Willis,Erin %A Delbaere,Marjorie %+ Department of Advertising, Public Relations, and Media Design, University of Colorado Boulder, 478 UCB, 1511 University Ave, Boulder, CO, 80310, United States, 1 3034927161, erin.willis@colorado.edu %K social media %K influencers %K health %K pharmaceutical marketing %K direct-to-consumer advertising %K relationship marketing %K marketing %K advertising %K pharmaceuticals %K ethics %D 2022 %7 1.3.2022 %9 Viewpoint %J J Med Internet Res %G English %X Social media influencers are becoming an increasingly popular strategic communication tactic used across industry verticals, including entertainment, fashion, and beauty, to engage directly with consumers. Pharmaceutical companies have also recently entered the social media marketing arena and—within the bounds of governmental regulations—have found ways to build relationships directly with patients using covert persuasion tactics like partnering with social media influencers. Due to consumers’ negative perceptions of pharmaceutical companies, it makes sense that new marketing tactics are being used to establish and improve relationships with consumers. Previous research well documents the ethical dilemmas of direct-to-consumer advertising, and there is recent burgeoning literature on online covert marketing tactics. The academic and medical literature, however, is behind in regard to social media influencers used in health and medicine. This paper highlights and defines terms used in industry practice, and also calls for more investigation and sets forward a research agenda. As consumers spend more time online and patients continue to consult social media for health information, it is important that this new marketing trend does not go unnoticed. %M 35230241 %R 10.2196/29422 %U https://www.jmir.org/2022/3/e29422 %U https://doi.org/10.2196/29422 %U http://www.ncbi.nlm.nih.gov/pubmed/35230241 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 2 %P e29124 %T Novel Interactive Tool for Breast and Ovarian Cancer Risk Assessment (Bright Pink Assess Your Risk): Development and Usability Study %A Hibler,Elizabeth A %A Fought,Angela J %A Kershaw,Kiarri N %A Molsberry,Rebecca %A Nowakowski,Virginia %A Lindner,Deborah %+ Department of Preventive Medicine, Feinberg School of Medicine, Northwestern University, 680 N Lake Shore Drive, Suite 1400, Chicago, IL, 60611, United States, 1 3125031178, elizabeth.hibler@northwestern.edu %K breast cancer %K ovarian cancer %K risk assessment %K genetic testing %D 2022 %7 24.2.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: The lifetime risk of breast and ovarian cancer is significantly higher among women with genetic susceptibility or a strong family history. However, current risk assessment tools and clinical practices may identify only 10% of asymptomatic carriers of susceptibility genes. Bright Pink developed the Assess Your Risk (AYR) tool to estimate breast and ovarian cancer risk through a user-friendly, informative web-based quiz for risk assessment at the population level. Objective: This study aims to present the AYR tool, describe AYR users, and present evidence that AYR works as expected by comparing classification using the AYR tool with gold standard genetic testing guidelines. Methods: The AYR is a recently developed population-level risk assessment tool that includes 26 questions based on the National Comprehensive Cancer Network (NCCN) guidelines and factors from other commonly used risk assessment tools. We included all women who completed the AYR between November 2018 and January 2019, with the exception of self-reported cancer or no knowledge of family history. We compared AYR classifications with those that were independently created using NCCN criteria using measures of validity and the McNemar test. Results: There were 143,657 AYR completions, and most participants were either at increased or average risk for breast cancer or ovarian cancer (137,315/143,657, 95.59%). Using our estimates of increased and average risk as the gold standard, based on the NCCN guidelines, we estimated the sensitivity and specificity for the AYR algorithm–generated risk categories as 100% and 89.9%, respectively (P<.001). The specificity improved when we considered the additional questions asked by the AYR to define increased risk, which were not examined by the NCCN criteria. By race, ethnicity, and age group; we found that the lowest observed specificity was for the Asian race (85.9%) and the 30 to 39 years age group (87.6%) for the AYR-generated categories compared with the NCCN criteria. Conclusions: These results demonstrate that Bright Pink’s AYR is an accurate tool for use by the general population to identify women at increased risk of breast and ovarian cancer. We plan to validate the tool longitudinally in future studies, including the impact of race, ethnicity, and age on breast and ovarian cancer risk assessment. %M 35200148 %R 10.2196/29124 %U https://www.jmir.org/2022/2/e29124 %U https://doi.org/10.2196/29124 %U http://www.ncbi.nlm.nih.gov/pubmed/35200148 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 1 %P e30340 %T Parents’ Experience With a Mobile Health Intervention to Influence Human Papillomavirus Vaccination Decision Making: Mixed Methods Study %A Becker,Elisabeth RB %A Shegog,Ross %A Savas,Lara S %A Frost,Erica L %A Coan,Sharon P %A Healy,C Mary %A Spinner,Stanley W %A Vernon,Sally W %+ University of Texas Health Science Center at Houston, 7000 Fannin St., Houston, TX, 77030, United States, 1 (713) 500 9677, elisabethrbecker@gmail.com %K human papillomavirus %K vaccination %K user experience %K parent %K mHealth %K HPV %K vaccine %K HPV vaccine %K parenting %K pediatrics %K sexual health %K cervical cancer %K adolescents %K mHealth %K app %K application %D 2022 %7 21.2.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Human papillomavirus (HPV)-attributed cancers are preventable, yet HPV vaccination rates severely lag behind other adolescent vaccinations. HPVcancerFree (HPVCF) is a mobile health (mHealth) intervention developed to influence parental HPV vaccination decision making by raising awareness of HPV, reducing HPV vaccination barriers, and enabling HPV vaccination scheduling and reminders through a smartphone app. Evaluating the user experience of mHealth interventions is a vital component in assessing their quality and success but tends to be underreported in mHealth intervention evaluation. Objective: We aimed to evaluate the user experience of HPVCF, an HPV cancer prevention app designed for a pediatric clinic network, using mixed methods data collected from log files, survey measures, and qualitative feedback. Methods: Study data were evaluated from parents in a large US pediatric clinic network using HPVCF in the treatment study condition of a group randomized controlled trial. Log data captured HPVCF retention and use. Postintervention rating scales and items assessed HPVCF utility, usefulness, understandability, appeal, credibility, and perceived impact. Overall quality was evaluated using the user version of the Mobile Application Rating Scale (uMars). Open-ended responses assessed parent recommendations for HPVCF enhancement. Results: The 98 parents were mainly female (n=94, 96%), 41 (5.67) years of age, college educated (n=55, 56%), and White and non-Hispanic (n=55, 56%) and had private health insurance for their children (n=75, 77%). Parents used HPVCF 197 times, with the average visit duration approximating 3.5 minutes. The uMARS app quality score was positively skewed (4.2/5.0). Mean ratings were highest for information (4.46 [SD 0.53]) and lowest for engagement (3.74 [SD 0.69]). In addition, of 95 parents, 45 (47%) rated HPVCF as helpful in HPV vaccination decision making and 16 (17%) attributed HPV vaccine initiation to HPVCF. Parents reported that HPVCF increased their awareness (84/95, 88%), knowledge (84/95, 88%), and HPV vaccination intentions (64/95, 67%). Most of the 98 parents rated the 4 HPVCF components as useful (72-92 [73%-94%]). Parents also agreed that HPVCF is clear (86/95, 91%), accurate (86/95, 91%), and more helpful than other HPV vaccine information they had received (89/95, 94%) and that they would recommend it to others (81/95, 85%). In addition, parents suggested ways to increase awareness and engagement with the app, along with opportunities to enhance the content and functionality. Conclusions: HPVCF was well received by parents and performed well on indicators of quality, usefulness, utility, credibility, and perceived impact. This study contributes a multimethod and multimeasure evaluation to the growing body of literature focused on assessing the user experience of patient-focused technology-mediated applications for HPV education. %M 35188469 %R 10.2196/30340 %U https://pediatrics.jmir.org/2022/1/e30340 %U https://doi.org/10.2196/30340 %U http://www.ncbi.nlm.nih.gov/pubmed/35188469 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 2 %P e30108 %T The Attitudes of Egyptian Web-Based Health Information Seekers Toward Health Information Provided Through the Internet: Qualitative Study %A Ghweeba,Mayada %A Lindenmeyer,Antje %A Shishi,Sobhi %A Waheed,Amani %A Kofi,Mostafa %A Amer,Shaymaa %+ Institute of Clinical Sciences, University of Birmingham Edgbaston, Birmingham, B15 2TT, United Kingdom, 44 (0)121 414 5390, a.lindenmeyer@bham.ac.uk %K Egyptian internet users %K online health information %K doctor–patient relationship %D 2022 %7 18.2.2022 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 35179505 %R 10.2196/30108 %U https://formative.jmir.org/2022/2/e30108 %U https://doi.org/10.2196/30108 %U http://www.ncbi.nlm.nih.gov/pubmed/35179505 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 1 %P e33651 %T Usage and Usability of a National e-Library for Chemotherapy Regimens: Mixed Methods Study %A Fyhr,AnnSofie %A Persson,Johanna %A Ek,Åsa %+ Regional Cancer Centre South, Region Skåne, Medicon Village, Scheeletorget 1, Lund, SE-223 81, Sweden, 46 46 275 23 51, ann-sofie.fyhr@skane.se %K chemotherapy regimens %K user evaluation %K standardization %K patient safety %K chemotherapy %K safety %K usability %K e-library %K medication errors %D 2022 %7 17.2.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Accurate information about chemotherapy drugs and regimens is needed to reduce chemotherapy errors. A national e-library, as a common knowledge source with standardized chemotherapy nomenclature and content, was developed. Since the information in the library is both complex and extensive, it is central that the users can use the resource as intended. Objective: The aim of this study was to evaluate the usage and usability of an extensive e-library for chemotherapy regimens developed to reduce medication errors, support the health care staff in their work, and increase patient safety. Methods: To obtain a comprehensive evaluation, a mixed methods study was performed for a broad view of the usage, including a compilation of subjective views of the users (web survey, spontaneous user feedback, and qualitative interviews), analysis of statistics from the website, and an expert evaluation of the usability of the webpage. Results: Statistics from the website show an average of just over 2500 visits and 870 unique visitors per month. Most visits took place Mondays to Fridays, but there were 5-10 visits per day on weekends. The web survey, with 292 answers, shows that the visitors were mainly physicians and nurses. Almost 80% (224/292) of respondents searched for regimens and 90% (264/292) found what they were looking for and were satisfied with their visit. The expert evaluation shows that the e-library follows many existing design principles, thus providing some useful improvement suggestions. A total of 86 emails were received in 2020 with user feedback, most of which were from nurses. The main part (78%, 67/86) contained a question, and the rest had discovered errors mainly in some regimen. The interviews reveal that most hospitals use a computerized physician order entry system, and they use the e-library in various ways, import XML files, transfer information, or use it as a reference. One hospital without a system uses the administration schedules from the library. Conclusions: The user evaluation indicates that the e-library is used in the intended manner and that the users can interact without problems. Users have different needs depending on their profession and their workplace, and these can be supported. The combination of methods applied ensures that the design and content comply with the users’ needs and serves as feedback for continuous design and learning. With a broad national usage, the e-library can become a source for organizational and national learning and a source for continuous improvement of cancer care in Sweden. %M 35175199 %R 10.2196/33651 %U https://humanfactors.jmir.org/2022/1/e33651 %U https://doi.org/10.2196/33651 %U http://www.ncbi.nlm.nih.gov/pubmed/35175199 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 2 %P e34790 %T Online Health Information Seeking Behaviors Among Older Adults: Systematic Scoping Review %A Zhao,Yuxiang Chris %A Zhao,Mengyuan %A Song,Shijie %+ Business School, Hohai University, Fo-Cheng West Rd 8, Nanjing, 211000, China, 86 15951973800, ssong@hhu.edu.cn %K older adults %K online health information seeking %K health information behavior %K aging technology %K systematic scoping review %D 2022 %7 16.2.2022 %9 Review %J J Med Internet Res %G English %X Background: With the world’s population aging, more health-conscious older adults are seeking health information to make better-informed health decisions. The rapid growth of the internet has empowered older adults to access web-based health information sources. However, research explicitly exploring older adults’ online health information seeking (OHIS) behavior is still underway. Objective: This systematic scoping review aims to understand older adults’ OHIS and answer four research questions: (1) What types of health information do older adults seek and where do they seek health information on the internet? (2) What are the factors that influence older adults’ OHIS? (3) What are the barriers to older adults’ OHIS? (4) How can we intervene and support older adults’ OHIS? Methods: A comprehensive literature search was performed in November 2020, involving the following academic databases: Web of Science; Cochrane Library database; PubMed; MEDLINE; CINAHL Plus; APA PsycINFO; Library and Information Science Source; Library, Information Science and Technology Abstracts; Psychology and Behavioral Sciences Collection; Communication & Mass Media Complete; ABI/INFORM; and ACM Digital Library. The initial search identified 8047 publications through database search strategies. After the removal of duplicates, a data set consisting of 5949 publications was obtained for screening. Among these, 75 articles met the inclusion criteria. Qualitative content analysis was performed to identify themes related to the research questions. Results: The results suggest that older adults seek 10 types of health information from 6 types of internet-based information sources and that 2 main categories of influencing factors, individual-related and source-related, impact older adults’ OHIS. Moreover, the results reveal that in their OHIS, older adults confront 3 types of barriers, namely individual, social, and those related to information and communication technologies. Some intervention programs based on educational training workshops have been created to intervene and support older adults’ OHIS. Conclusions: Although OHIS has become increasingly common among older adults, the review reveals that older adults’ OHIS behavior is not adequately investigated. The findings suggest that more studies are needed to understand older adults’ OHIS behaviors and better support their medical and health decisions in OHIS. Based on the results, the review proposes multiple objectives for future studies, including (1) more investigations on the OHIS behavior of older adults above 85 years; (2) conducting more longitudinal, action research, and mixed methods studies; (3) elaboration of the mobile context and cross-platform scenario of older adults’ OHIS; (4) facilitating older adults’ OHIS by explicating technology affordance; and (5) promoting and measuring the performance of OHIS interventions for older adults. %M 35171099 %R 10.2196/34790 %U https://www.jmir.org/2022/2/e34790 %U https://doi.org/10.2196/34790 %U http://www.ncbi.nlm.nih.gov/pubmed/35171099 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 1 %P e35165 %T Navigating the Online World of Lifestyle Health Information: Qualitative Study With Adolescents %A Raeside,Rebecca %A Jia,Si Si %A Redfern,Julie %A Partridge,Stephanie R %+ Engagement and Co-Design Research Hub, Faculty of Medicine and Health, University of Sydney, Level 6, Block K, Westmead Hospital, Westmead, 2145, Australia, 61 412961432, rebecca.raeside@sydney.edu.au %K adolescents %K chronic disease prevention %K websites %K social media %K smartphone applications %D 2022 %7 11.2.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Adolescence is a critical life stage characterized by an interplay of biological, social, and environmental factors. Such factors influence lifestyle health-related trajectories, including dietary behaviors, physical activity levels, body weight, and sleep. Generation Z (born 1995-2015) is the most internet-dependent and technologically savvy generation in history with increasing rates of smartphone ownership across high- and low-income countries. Gaps exist in understanding what online platforms adolescents are using and barriers and facilitators of these platforms to seek lifestyle health information. Objective: We evaluated adolescents’ perceptions on the use of contemporary digital platforms (websites, social media platforms, smartphone apps) to seek lifestyle heath information or advice. Methods: Virtual focus groups were held via Zoom teleconference between July 2021 and August 2021. Eligible participants were 13 years to 18 years old, were living in Australia, and had searched for online lifestyle health information in the previous 3 months. For this study, lifestyle health information referred to key behaviors and risk factors for chronic disease, namely, diet, physical activity, weight management, and sleep. Participants were recruited through an existing database of research participants and networks of the research team. Focus groups were analyzed using the framework approach, in which data are systematically searched to recognize patterns in the data and manage, analyze, and identify themes. Focus group audio files were transcribed verbatim and independently coded by 2 researchers (RR, SSJ). Through an iterative, reflexive process, a final coding matrix was agreed on by all researchers and used to thematically analyze the data. Results: We held 5 focus groups (n=32; mean age: 16.3 [SD 1.4] years; 18/32, 56% female; 13/32, 41% spoke language other than English at home). Thematic analysis revealed participants searched for information both actively (eg, on Google or YouTube) and passively (eg, scrolling social media and using existing apps preloaded to their smartphone such as Apple Health, Samsung Health, or Google Fit apps). Participants identified that the most helpful information was well-presented in terms of aesthetic appeal and layout and came from a credible and reliable source (eg, any sponsorships disclosed), and they expressed the need for the information to be relatable. Mixed views were reported for the application of lifestyle health information found online. Some participants reported behavior change, while others noted that certain advice was hard to maintain and incorporate into their lifestyle. Conclusions: This study highlights the abundance and complexity of lifestyle health information online for adolescents. Adolescents in the digital age seek access to information that is appealing, credible, relevant, and actionable for lifestyle health behaviors. To appeal to needs of adolescents, future interventions for adolescents relating to lifestyle health must consider co-design methodological approaches. Furthermore, the regulation of lifestyle health information available online warrants further investigation. %M 35147506 %R 10.2196/35165 %U https://pediatrics.jmir.org/2022/1/e35165 %U https://doi.org/10.2196/35165 %U http://www.ncbi.nlm.nih.gov/pubmed/35147506 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 2 %P e23354 %T The Effect of Online Health Information Seeking on Physician-Patient Relationships: Systematic Review %A Luo,Aijing %A Qin,Lu %A Yuan,Yifeng %A Yang,Zhengzijin %A Liu,Fei %A Huang,Panhao %A Xie,Wenzhao %+ Key Laboratory of Medical Information Research, The Third Xiangya Hospital, Central South University, No.138 Tongzipo Road, Changsha, 410013, China, 86 0731 8861 8316, xie_wenzhao@126.com %K online health information %K search behavior %K physician-patient relationship %K physician-patient consultation. %D 2022 %7 10.2.2022 %9 Review %J J Med Internet Res %G English %X 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. %M 35142620 %R 10.2196/23354 %U https://www.jmir.org/2022/2/e23354 %U https://doi.org/10.2196/23354 %U http://www.ncbi.nlm.nih.gov/pubmed/35142620 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 1 %P e31263 %T Understanding the Information Needs of Patients With Ovarian Cancer Regarding Genetic Testing to Inform Intervention Design: Interview Study %A Zhang,Yan %A Yi,Siqi %A Trace,Ciaran B %A Williams-Brown,Marian Yvette %+ School of Information, The University of Texas at Austin, 1616 Guadalupe Street, Austin, TX, 78701, United States, 1 5124719448, yanz@utexas.edu %K patient information needs %K consumer health informatics %K ovarian cancer %K genetic testing %K genetic counseling %K mobile phone %D 2022 %7 8.2.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Experts in gynecological cancer care recommend that all patients with invasive or high-grade ovarian cancer (OC) undergo genetic testing. However, even patients who intend to take or have taken genetic tests have many unaddressed information needs regarding genetic testing. Existing genetic counseling falls short of adequately addressing this challenge. Objective: This study aims to investigate the genetic testing–related information needs of patients with OC to inform the design of interactive technology-based interventions that can enhance communication of genetic testing information to patients. Methods: We interviewed 20 patients with OC who had taken genetic tests and gathered genetic testing–related messages from an active OC web-based community. The interview transcripts and web-based community messages were analyzed using the qualitative content analysis method. Results: Data analyses produced a comprehensive taxonomy of the genetic testing–related information needs of patients with OC, which included five major topic clusters: knowledge of genetic testing as a medical test, genetic testing process, genetic testing implications for patients, implications for family members, and medical terminology. Findings indicated that patients wanted to receive information that was relevant, understandable, concise, usable, appropriate, sympathetic, and available when needed. They also preferred various channels to receive information, including internet-based technologies, print, and conversations with health care providers. Conclusions: Patients with OC need a range of information to address the uncertainties and challenges that they encounter while taking genetic tests. Their preferences for channels to receive information vary widely. A multichannel information delivery solution that combines both provider-led and peer-to-peer education models is needed to supplement existing genetic counseling to effectively meet the genetic testing–related information needs of patients with OC. %M 35133282 %R 10.2196/31263 %U https://cancer.jmir.org/2022/1/e31263 %U https://doi.org/10.2196/31263 %U http://www.ncbi.nlm.nih.gov/pubmed/35133282 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 11 %N 1 %P e28137 %T Approaches to Determine and Manage Sexual Consent Abilities for People With Cognitive Disabilities: Systematic Review %A Esmail,Shaniff %A Concannon,Brendan %+ Department of Occupational Therapy, University of Alberta, Corbett Hall, 8205 - 114St 2-64, Edmonton, AB, T6G 2G4, Canada, 1 (780) 492 0397, shaniff.esmail@ualberta.ca %K sexual consent %K capacity %K disability %K sexual expression %K dementia %K ethics %K long-term care %D 2022 %7 4.2.2022 %9 Review %J Interact J Med Res %G English %X Background: This review focused on how sexual consent ability was determined, managed, and enhanced in people with cognitive disabilities, with the aim of better understanding the recurring themes influencing the design and implementation of these approaches. If a person’s consensual ability becomes compromised, owing to either an early or late-onset cognitive disability, the formal systems involved must establish plans to balance the individual’s rights and restrictions on sexual expression. This review identified these plans, focusing on how they promoted the intimacy rights of the individual. Objective: This study aims to identify approaches that determine sexual consent ability in people with cognitive disabilities, identify the means of managing and enhancing sexual consent ability in people with cognitive disabilities, and note the recurring themes that influence how these approaches and management systems are designed and implemented. Methods: A systematic literature review was performed using EBSCOhost (Social Gerontology, CINAHL Plus, MEDLINE, and SocINDEX), Embase, PsyInfo, and Scopus to locate reports on terms expanded on sexual consent and cognitive disability. Results: In all, 47 articles were identified, featuring assessment practices, legal case studies, and clinical standards for managing sexual consent capacity in people with cognitive disabilities. A total of 8 studies (5/8, 63% qualitative and 3/8, 38% quantitative) were included out of the 47 articles identified. Approaches for determining sexual consent included functional capacity and person-centered, integrated, and contextual approaches. Management of sexual consent ability included education, attitude, and advanced directives and support networks. The recurring themes that influenced these approaches included the 3 legal criteria of consent, American Bar Association and American Psychological Association Model, Lichtenberg and Strzepek Instrument, Ames and Samowitz Instrument, Lyden approach, Mental Capacity Act of 2005, and Vancouver Coastal Health Authority of 2009. Conclusions: Determining sexual consent takes a holistic approach, with individuals judged in terms of their adaptive abilities, capacities, and human rights. The attitudes of those using this holistic approach need to be balanced; otherwise, the sexual rights of assessed people could be moved either in favor or against them. The ideal outcome, after person-centered considerations of those living with cognitive disabilities includes the people themselves being involved in the process of personalizing these approaches used to facilitate healthy intimate relationships. %M 35119371 %R 10.2196/28137 %U https://www.i-jmr.org/2022/1/e28137 %U https://doi.org/10.2196/28137 %U http://www.ncbi.nlm.nih.gov/pubmed/35119371 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 2 %P e34574 %T Behavioral Efficacy of a Sexual Health Mobile App for Men Who Have Sex With Men: Randomized Controlled Trial of Mobile Messaging for Men %A Sullivan,Patrick Sean %A Stephenson,Rob %A Hirshfield,Sabina %A Mehta,Cyra Christina %A Zahn,Ryan %A Bauermeister,Jose A %A Horvath,Keith %A Chiasson,Mary Ann %A Gelaude,Deborah %A Mullin,Shelby %A Downing Jr,Martin J %A Olansky,Evelyn Jolene %A Wiatrek,Sarah %A Rogers,Erin Q %A Rosenberg,Eli %A Siegler,Aaron J %A Mansergh,Gordon %+ Department of Epidemiology, Rollins School of Public Health, Emory University, 1518 Clifton Road NE, Atlanta, GA, 30322, United States, 1 404 210 6039, pssulli@emory.edu %K HIV prevention %K mHealth %K tool %K video %K randomized clinical trial %K app %K prevention %K HIV %K PrEP %K STI %K testing %K behavior %K efficacy %K men who have sex with men %K MSM %K sexuality %K gay %K bisexual %K United States %D 2022 %7 2.2.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Gay, bisexual, and other men who have sex with men (GBMSM) face the highest burden of HIV in the United States, and there is a paucity of efficacious mobile health (mHealth) HIV prevention and care interventions tailored specifically for GBMSM. We tested a mobile app combining prevention messages and access to core prevention services for GBMSM. Objective: This study aims to measure the efficacy of the Mobile Messaging for Men (M-cubed) app and related services to increase HIV prevention and care behaviors in diverse US GBMSM. Methods: We conducted a randomized open-label study with a waitlist control group among GBMSM in 3 groups (low-risk HIV-negative group, high-risk HIV-negative group, and living-with-HIV [LWH] group) recruited online and in venues in Atlanta, Detroit, and New York City. Participants were randomly assigned to receive access to the app immediately or at 9 months after randomization. The app provided prevention messages in 6 domains of sexual health and offered ordering of at-home HIV and sexually transmitted infection test kits, receiving preexposure prophylaxis (PrEP) evaluations and navigation, and service locators. Serostatus- and risk-specific prevention outcomes were evaluated at baseline, at the end of the intervention period, and at 3, 6, and 9 months after the intervention period. Results: In total, 1226 GBMSM were enrolled and randomized; of these 611 (49.84%) were assigned to the intervention group and 608 (99.51%) were analyzed, while 615 (50.16%) were assigned to the control group and 612 (99.51%) were analyzed. For high-risk GBMSM, allocation to the intervention arm was associated with higher odds of HIV testing during the intervention period (adjusted odds ratio [aOR] 2.02, 95% CI 1.11-3.66) and with higher odds of using PrEP in the 3 months after the intervention period (aOR 2.41, 95% CI 1.00-5.76, P<.05). No changes in HIV prevention or care were associated with allocation to the intervention arm for the low-risk HIV-negative and LWH groups. Conclusions: Access to the M-cubed app was associated with increased HIV testing and PrEP use among high-risk HIV-negative GBMSM in 3 US cities. The app could be made available through funded HIV prevention providers; additional efforts are needed to understand optimal strategies to implement the app outside of the research setting. Trial Registration: ClinicalTrials.gov NCT03666247; https://clinicaltrials.gov/ct2/show/NCT03666247 International Registered Report Identifier (IRRID): RR2-10.2196/16439 %M 35025755 %R 10.2196/34574 %U https://www.jmir.org/2022/2/e34574 %U https://doi.org/10.2196/34574 %U http://www.ncbi.nlm.nih.gov/pubmed/35025755 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 1 %P e29857 %T Health Care Professional and Caregiver Attitudes Toward and Usage of Medical Podcasting: Questionnaire Study %A Lee,Clement %A Zhou,Melissa S %A Wang,Evelyn R %A Huber,Matthew %A Lockwood,Katie K %A Parga,Joanna %+ Children's Hospital of Philadelphia, 3401 Civic Center Blvd, Philadelphia, PA, 19104, United States, 1 626 660 4428, theclem@gmail.com %K podcasts %K social media %K caregiver %K parent %K parenting %K education %K pediatrics %K podcasting %K patient education %D 2022 %7 1.2.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Podcasts are used increasingly in medicine. There is growing research into the role of podcasts in medical education, but the use of podcasting as a tool for pediatric parent/caregiver health education is largely unexplored. As parents/caregivers seek medical information online, an understanding of parental preferences is needed. Objective: We sought to explore health care professional and parent/caregiver awareness and views on podcasting as a health education tool. Methods: This survey study was conducted and distributed via in-person collection from parents/caregivers (≥18 years old) in the waiting room of an academic pediatric primary care clinic, targeted social media promotion, and professional listservs for health care professionals in pediatrics. Statistical analysis included chi-square tests of independence between categorical variables. Results: In total, 125 health care professionals and 126 caregivers completed the survey. Of those surveyed, 81% (101/125) of health care professionals and 55% (69/126) of parents/caregivers listened to podcasts (P<.001). Health care professionals and parents/caregivers listed the same top 3 quality indicators for medical podcasts. Podcast listeners were more likely to have higher incomes and use professional websites for information. The survey elicited a variety of reasons for podcast nonengagement. Conclusions: Health care professionals appear to be more engaged in medical education podcasts than parents/caregivers. However, similar factors were valued when evaluating the quality of a pediatric podcast: accuracy, transparency, and credibility. Professional websites may be one avenue to increase podcast uptake. More needs to be done to explore the use of podcasts and digital media for medical information. %M 35103616 %R 10.2196/29857 %U https://pediatrics.jmir.org/2022/1/e29857 %U https://doi.org/10.2196/29857 %U http://www.ncbi.nlm.nih.gov/pubmed/35103616 %0 Journal Article %@ 2562-7600 %I JMIR Publications %V 5 %N 1 %P e31380 %T Web-Based Training for Nurses on Using a Decision Aid to Support Shared Decision-making About Prenatal Screening: Parallel Controlled Trial %A Poulin Herron,Alex %A Agbadje,Titilayo Tatiana %A Guay-Bélanger,Sabrina %A Ngueta,Gérard %A Roch,Geneviève %A Rousseau,François %A Légaré,France %+ VITAM - Research Center on Sustainable Health, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, 2480, chemin de la Canardière, Quebec City, QC, G1G 2G1, Canada, 1 418 663 5313 ext 12286, France.Legare@mfa.ulaval.ca %K shared decision-making %K prenatal screening %K training %K nurses %K nursing %K behavioral intention %K trisomy %K Down syndrome %K continuing professional development %K continuing education %K medical education %K decision aid %K screening %K prenatal %K pediatrics %D 2022 %7 25.1.2022 %9 Original Paper %J JMIR Nursing %G English %X Background: Nurses play an important role in supporting pregnant women making decisions about prenatal screening for Down syndrome. We developed a web-based shared decision-making (SDM) training program for health professionals focusing on Down syndrome screening decisions. Objective: In this study, we aim to assess the impact of an SDM training program on nurses’ intention to use a decision aid with pregnant women deciding on prenatal screening for Down syndrome. Methods: In this 2-arm, parallel controlled trial, French-speaking nurses working with pregnant women in the province of Quebec were recruited by a private survey firm. They were allocated by convenience either to the intervention group (web-based SDM course that included prenatal screening) or to the control group (web-based course focusing on prenatal screening alone, with no SDM content). The primary outcome was the intention to use a decision aid. Secondary outcomes were psychosocial variables of intention, knowledge, satisfaction, acceptability, perceived usefulness, and reaction to the pedagogical approach. All outcomes were self-assessed through web-based questionnaires, including the space for written comments. We used 2-tailed Student t test and Fisher exact test to compare continuous and categorical variables between groups, respectively. Results: Of the 57 participants assessed for eligibility, 40 (70%) were allocated to the intervention (n=20) or control group (n=20) and 36 (n=18 in each) completed the courses. The mean age of the participants was 41 (SD 9) years. Most were women (39/40, 98%), White (38/40, 95%), clinical nurses (28/40, 70%), and had completed at least a bachelor’s degree (30/40, 75%). After the intervention, the mean score of intention was 6.3 (SD 0.8; 95% CI 5.9-6.7) for the intervention group and 6.0 (SD 1.2; 95% CI 5.42-6.64) for the control group (scale 1-7). The differences in intention and other psychosocial variable scores between the groups were not statistically significant. Knowledge scores for SDM were significantly higher in the intervention group (79%, 95% CI 70-89 vs 64%, 95% CI 57-71; P=.009). The intervention was significantly more acceptable in the intervention group (4.6, 95% CI 4.4-4.8 vs 4.3, 95% CI 4.1-4.5; P=.02), and reaction to the pedagogical approach was also significantly more positive in the intervention group (4.7, 95% CI 4.5-4.8 vs 4.4, 95% CI 4.2-4.5; P=.02). There was no significant difference in overall satisfaction (or in perceived usefulness). Furthermore, 17 participants (9 in the intervention group and 8 in the control group) provided written comments on the intervention. Conclusions: This study focuses on web-based nursing education and its potential to support pregnant women’s decision-making needs. It shows that nurses’ intention to use a decision aid to enhance SDM in prenatal care is high, with or without training, but that their knowledge about SDM can be improved with web-based training. International Registered Report Identifier (IRRID): RR2-10.2196/17878 %M 34874274 %R 10.2196/31380 %U https://nursing.jmir.org/2022/1/e31380 %U https://doi.org/10.2196/31380 %U http://www.ncbi.nlm.nih.gov/pubmed/34874274 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 1 %P e22586 %T Patient Utilization of Online Information and its Influence on Orthopedic Surgeon Selection: Cross-sectional Survey of Patient Beliefs and Behaviors %A Hoang,Victor %A Parekh,Amit %A Sagers,Kevin %A Call,Trevor %A Howard,Shain %A Hoffman,Jason %A Lee,Daniel %+ Valley Hospital Medical Center, 620 Shadow Lane, Las Vegas, NV, 89106, United States, 1 7148374577, hoangorthopedics@gmail.com %K orthopedics %K practice management %K physician selection %K internet reviews %K patient decision %K practice %K patient online review %K social media %K physician perception %K patient choice %K health literacy %D 2022 %7 19.1.2022 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 35044319 %R 10.2196/22586 %U https://formative.jmir.org/2022/1/e22586 %U https://doi.org/10.2196/22586 %U http://www.ncbi.nlm.nih.gov/pubmed/35044319 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 14 %N 1 %P e31699 %T Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis %A Buchanan,Francine %A Lai,Claudia %A Cohen,Eyal %A Milo-Manson,Golda %A Shachak,Aviv %+ Institute of Health Policy, Management, and Evaluation, University of Toronto, 155 College St, 4th Floor, Toronto, ON, M5T 3M6, Canada, 1 (416) 978 4326, buchanan.fr@gmail.com %K shared decision-making %K activity theory %K parental decision-making %K parenting %K participatory medicine %K pediatric %K caregiving %D 2022 %7 17.1.2022 %9 Original Paper %J J Particip Med %G English %X 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. %M 35037890 %R 10.2196/31699 %U https://jopm.jmir.org/2022/1/e31699 %U https://doi.org/10.2196/31699 %U http://www.ncbi.nlm.nih.gov/pubmed/35037890 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 1 %P e29889 %T Efficacy of Digital Health Tools for a Pediatric Patient Registry: Semistructured Interviews and Interface Usability Testing With Parents and Clinicians %A Doyle,Sarah %A Pavlos,Rebecca %A Carlson,Samantha J %A Barton,Katherine %A Bhuiyan,Mejbah %A Boeing,Bernadett %A Borland,Meredith L %A Hoober,Steven %A Blyth,Christopher C %+ Emergency Department, Perth Children's Hospital, 15 Hospital Avenue, Nedlands, Perth, 6009, Australia, 61 64562222, sarahkdoyle@me.com %K usability testing %K REDCap %K discharge instructions %K acute respiratory infection %K digital health technology %K mobile technology %K semistructured interview %K pediatric acute respiratory infection %K mobile phone %D 2022 %7 17.1.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Acute respiratory infection (ARI) in childhood is common, but more knowledge on the burden and natural history of ARI in the community is required. A better understanding of ARI risk factors, treatment, and outcomes will help support parents to manage their sick child at home. Digital health tools are becoming more widely adopted in clinical care and research and may assist in understanding and managing common pediatric diseases, including ARI, in hospitals and in the community. We integrated 2 digital tools—a web-based discharge communication system and the REDCap (Research Electronic Data Capture) platform—into the Pragmatic Adaptive Trial for Acute Respiratory Infection in Children to enhance parent and physician engagement around ARI discharge communication and our patient registry. Objective: The objective of this study is to determine the efficacy and usability of digital tools integrated into a pediatric patient registry for ARI. Methods: Semistructured interviews and software interface usability testing were conducted with 11 parents and 8 emergency department physicians working at a tertiary pediatric hospital and research center in Perth, Western Australia, in 2019. Questions focused on experiences of discharge communication and clinical trial engagement. Responses were analyzed using the qualitative Framework Method. Participants were directly observed using digital interfaces as they attempted predetermined tasks that were then classified as success, failure, software failure, or not observed. Participants rated the interfaces using the System Usability Scale (SUS). Results: Most parents (9/11, 82%) indicated that they usually received verbal discharge advice, with some (5/11, 45%) recalling receiving preprinted resources from their physician. Most (8/11, 73%) would also like to receive discharge advice electronically. Most of the physicians (7/8, 88%) described their usual practice as verbal discharge instructions, with some (3/8, 38%) reporting time pressures associated with providing discharge instructions. The digital technology option was preferred for engaging in research by most parents (8/11, 73%). For the discharge communication digital tool, parents gave a mean SUS score of 94/100 (SD 4.3; A grade) for the mobile interface and physicians gave a mean usability score of 93/100 (SD 4.7; A grade) for the desktop interface. For the research data management tool (REDCap), parents gave a mean usability score of 78/100 (SD 11.0; C grade) for the mobile interface. Conclusions: Semistructured interviews allowed us to better understand parent and physician experiences of discharge communication and clinical research engagement. Software interface usability testing methods and use of the SUS helped us gauge the efficacy of our digital tools with both parent and physician users. This study demonstrates the feasibility of combining qualitative research methods with software industry interface usability testing methods to help determine the efficacy of digital tools in a pediatric clinical research setting. %M 35037889 %R 10.2196/29889 %U https://formative.jmir.org/2022/1/e29889 %U https://doi.org/10.2196/29889 %U http://www.ncbi.nlm.nih.gov/pubmed/35037889 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 1 %P e29303 %T Direct Access for Patients to Diagnostic Testing and Results Using eHealth: Systematic Review on eHealth and Diagnostics %A Versluis,Anke %A Schnoor,Kyma %A Chavannes,Niels H %A Talboom-Kamp,Esther PWA %+ Department of Public Health and Primary Care, Leiden University Medical Center, Albinusdreef 2, Leiden, 2300 RC, Netherlands, 31 71526 8433, k.schnoor@lumc.nl %K eHealth %K systematic review %K diagnostic testing %K home-based test %K self-test %D 2022 %7 12.1.2022 %9 Review %J J Med Internet Res %G English %X 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. %M 35019848 %R 10.2196/29303 %U https://www.jmir.org/2022/1/e29303 %U https://doi.org/10.2196/29303 %U http://www.ncbi.nlm.nih.gov/pubmed/35019848 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 11 %N 1 %P e26414 %T Helping Patients Communicate With Oncologists When Cancer Treatment Resistance Occurs to Develop, Test, and Implement a Patient Communication Aid: Sequential Collaborative Mixed Methods Study %A Brédart,Anne %A Rault,Aude %A Terrasson,Johanna %A Seigneur,Etienne %A De Koning,Leanne %A Hess,Elisabeth %A Savignoni,Alexia %A Cottu,Paul %A Pierga,Jean-Yves %A Piperno-Neumann,Sophie %A Rodrigues,Manuel %A Bouleuc,Carole %A Dolbeault,Sylvie %+ Psycho-Oncology Unit, Institut Curie, Paris Sciences et Lettres Research University, 26 rue d'Ulm 75248 Paris Cedex 05, Paris, 75248, France, 33 0144324033 ext 4350, anne.bredart@curie.fr %K cancer resistance %K physician-patient communication %K question prompt list %K patient participation %K collaborative research %K mixed methods %D 2022 %7 12.1.2022 %9 Protocol %J JMIR Res Protoc %G English %X Background: Most cancer-related deaths result from disseminated diseases that develop resistance to anticancer treatments. Inappropriate communication in this challenging situation may result in unmet patient information and support needs. Patient communication aids such as question prompt lists (QPLs) may help. Objective: This study aims to develop and pilot-test a specific QPL in the following two contrasting clinical contexts in France after cancer resistance has developed: triple-negative and luminal B metastatic breast cancer (MBC) and metastatic uveal melanoma (MUM). Methods: A sequential study design with a mixed methods collaborative approach will be applied. The first step aims to build a specific QPL. Step 1a will explore oncologist-patient communication issues from oncology professionals’ interviews (n=20 approximately). Step 1b will appraise information and support needs experienced by patients with MBC or MUM both quantitatively (n=80) and qualitatively (n=40 approximately). These data will be used to develop and pilot-test a QPL specific to patients with cancer experiencing initial or acquired resistance to treatment. We expect to obtain a core QPL that comprises questions and concerns commonly expressed by patients with resistant cancer and is complemented by specific issues for either MBC or MUM cancer sites. In step 1c, 2 focus groups of patients with any type of metastatic cancer (n=4) and health care professionals (n=4) will be conducted to revise the content of a preliminary QPL and elaborate an acceptable and feasible clinical implementation. In step 1d, the content of the QPL version 1 and implementation guidance will be validated using a Delphi process. Step 2 will pilot-test the QPL version 1 in real practice with patients with MBC or MUM (n=80). Clinical utility will be assessed by comparing responses to questionnaires administered in step 1b (QPL-naive historical control group) and step 2 (QPL intervention group). Results: This study received grants in March and December 2019 and was approved by the French national ethics committee in July 2019. As of October 2021, interviews with oncology professionals have been conducted and analyzed (N=26 to reach saturation), and 39 and 27 patients with MBC and MUM, respectively, have been recruited. Conclusions: A clinically and culturally tailored QPL is expected to facilitate patients’ participation in consultations, improve oncologists’ responses to patients’ information and support needs, and thus foster patients’ psychological adjustment to the diagnosis and follow-up of cancer resistance to treatment. Trial Registration: ClinicalTrials.gov NCT04118062; http://clinicaltrials.gov/ct2/show/NCT04118062 International Registered Report Identifier (IRRID): DERR1-10.2196/26414 %M 35019850 %R 10.2196/26414 %U https://www.researchprotocols.org/2022/1/e26414 %U https://doi.org/10.2196/26414 %U http://www.ncbi.nlm.nih.gov/pubmed/35019850 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 1 %P e27178 %T Understanding Health Empowerment From the Perspective of Information Processing: Questionnaire Study %A Jiang,Fei %A Liu,Yongmei %A Hu,Junhua %A Chen,Xiaohong %+ Business School of Central South University, No 932, Lushan South Road, Yuelu District, Changsha, 410083, China, 86 13974834821, liuyongmeicn@163.com %K online health information %K perceived argument quality %K perceived source credibility %K health literacy %K health empowerment %K information seeking %D 2022 %7 11.1.2022 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 35014957 %R 10.2196/27178 %U https://www.jmir.org/2022/1/e27178 %U https://doi.org/10.2196/27178 %U http://www.ncbi.nlm.nih.gov/pubmed/35014957 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 1 %P e29969 %T An Artificial Intelligence Chatbot for Young People’s Sexual and Reproductive Health in India (SnehAI): Instrumental Case Study %A Wang,Hua %A Gupta,Sneha %A Singhal,Arvind %A Muttreja,Poonam %A Singh,Sanghamitra %A Sharma,Poorva %A Piterova,Alice %+ Department of Communication, University at Buffalo, The State University of New York, 359 Baldy Hall, Buffalo, NY, 14260, United States, 1 7166451501, hwang23@buffalo.edu %K artificial intelligence %K chatbot %K Facebook %K affordance %K sex education %K sexual and reproductive health %K contraception %K case study %K young people %K India %K transmedia %K mobile apps %K mobile health %K technology design %K user engagement %K digital health %K mobile phone %D 2022 %7 3.1.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Leveraging artificial intelligence (AI)–driven apps for health education and promotion can help in the accomplishment of several United Nations sustainable development goals. SnehAI, developed by the Population Foundation of India, is the first Hinglish (Hindi + English) AI chatbot, deliberately designed for social and behavioral changes in India. It provides a private, nonjudgmental, and safe space to spur conversations about taboo topics (such as safe sex and family planning) and offers accurate, relatable, and trustworthy information and resources. Objective: This study aims to use the Gibson theory of affordances to examine SnehAI and offer scholarly guidance on how AI chatbots can be used to educate adolescents and young adults, promote sexual and reproductive health, and advocate for the health entitlements of women and girls in India. Methods: We adopted an instrumental case study approach that allowed us to explore SnehAI from the perspectives of technology design, program implementation, and user engagement. We also used a mix of qualitative insights and quantitative analytics data to triangulate our findings. Results: SnehAI demonstrated strong evidence across fifteen functional affordances: accessibility, multimodality, nonlinearity, compellability, queriosity, editability, visibility, interactivity, customizability, trackability, scalability, glocalizability, inclusivity, connectivity, and actionability. SnehAI also effectively engaged its users, especially young men, with 8.2 million messages exchanged across a 5-month period. Almost half of the incoming user messages were texts of deeply personal questions and concerns about sexual and reproductive health, as well as allied topics. Overall, SnehAI successfully presented itself as a trusted friend and mentor; the curated content was both entertaining and educational, and the natural language processing system worked effectively to personalize the chatbot response and optimize user experience. Conclusions: SnehAI represents an innovative, engaging, and educational intervention that enables vulnerable and hard-to-reach population groups to talk and learn about sensitive and important issues. SnehAI is a powerful testimonial of the vital potential that lies in AI technologies for social good. %M 34982034 %R 10.2196/29969 %U https://www.jmir.org/2022/1/e29969 %U https://doi.org/10.2196/29969 %U http://www.ncbi.nlm.nih.gov/pubmed/34982034 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e30962 %T The Role of Recipient Characteristics in Health Video Communication Outcomes: Scoping Review %A Lungu,Daniel Adrian %A Røislien,Jo %A Wiig,Siri %A Shortt,Marie Therese %A Ferrè,Francesca %A Berg,Siv Hilde %A Thune,Henriette %A Brønnick,Kolbjørn Kallesten %+ SHARE – Centre for Resilience in Healthcare, Department of Quality and Health Technology, Faculty of Health Sciences, University of Stavanger, PO Box 8600, Stavanger, 4036, Norway, 47 51831000, daniel.a.lungu@uis.no %K health communication %K video communication %K communication outcomes %K recipient characteristics %K recipient factors %K health video communication %D 2021 %7 30.12.2021 %9 Review %J J Med Internet Res %G English %X Background: The importance of effective communication during public health emergencies has been highlighted by the World Health Organization, and it has published guidelines for effective communication in such situations. With video being a popular medium, video communication has been a growing area of study over the past decades and is increasingly used across different sectors and disciplines, including health. Health-related video communication gained momentum during the SARS-CoV-2 pandemic, and video was among the most frequently used modes of communication worldwide. However, although much research has been done regarding different characteristics of video content (the message) and its delivery (the messenger), there is a lack of knowledge about the role played by the characteristics of the recipients for the creation of effective communication. Objective: The aim of this review is to identify how health video communication outcomes are shaped by recipient characteristics, as such characteristics might affect the effectiveness of communication. The main research question of the study is as follows: do the characteristics of the recipients of health videos affect the outcomes of the communication? Methods: A scoping review describing the existing knowledge within the field was conducted. We searched for literature in 3 databases (PubMed, Scopus, and Embase) and defined eligibility criteria based on the relevance to the research question. Recipient characteristics and health video communication outcomes were identified and classified. Results: Of the 1040 documents initially identified, 128 (12.31%) met the criteria for full-text assessment, and 39 (3.75%) met the inclusion criteria. The included studies reported 56 recipient characteristics and 42 communication outcomes. The reported associations between characteristics and outcomes were identified, and the potential research opportunities were discussed. Contributions were made to theory development by amending the existing framework of the Integrated-Change model, which is an integrated model of motivational and behavioral change. Conclusions: Although several recipient characteristics and health video communication outcomes were identified, there is a lack of robust empirical evidence on the association between them. Further research is needed to understand how the preceding characteristics of the recipients might affect the various outcomes of health video communication. %M 34967758 %R 10.2196/30962 %U https://www.jmir.org/2021/12/e30962 %U https://doi.org/10.2196/30962 %U http://www.ncbi.nlm.nih.gov/pubmed/34967758 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e27392 %T Comparison of User-Oriented Information Services on the Websites of Large Hospitals in China and the United States: Cross-sectional Study %A Zhong,Yang %A Tao,Wenjuan %A Yang,Yanlin %A Wu,Hao %A Li,Weimin %A Wen,Jin %+ Institute of Hospital Management, West China Hospital, Sichuan University, No 37 Guoxue Xiang, Chengdu, 610041, China, 86 2885422671, huaxiwenjin@163.com %K hospital websites %K internet %K information services %K marketing mix %K 7Ps %K health care information services %K hospital management %K hospitals %K patient services %K eHealth %D 2021 %7 29.12.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 34964717 %R 10.2196/27392 %U https://www.jmir.org/2021/12/e27392 %U https://doi.org/10.2196/27392 %U http://www.ncbi.nlm.nih.gov/pubmed/34964717 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e26684 %T Genomic Health Literacy Interventions in Pediatrics: Scoping Review %A Gupta,Aarushi %A Cafazzo,Joseph A %A IJzerman,Maarten J %A Swart,Joost F %A Vastert,Sebastiaan %A Wulffraat,Nico M %A Benseler,Susanne %A Marshall,Deborah %A Yeung,Rae %A Twilt,Marinka %+ Division of Rheumatology, Department of Pediatrics, Alberta Children's Hospital, 28 Oki Drive NW, Calgary, AB, T3B 6A8, Canada, 1 403 955 7771, marinka.twilt@ahs.ca %K pediatrics %K patient education %K genetics %K genomics %K mHealth %K digital health %K internet %K genetic knowledge %K genomic health literacy %K children %K adolescents %D 2021 %7 24.12.2021 %9 Review %J J Med Internet Res %G English %X Background: The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patients and their parents about genomic concepts through digital health interventions have not been well-established. Objective: The primary objective of this scoping review is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients and their parents. The findings from this review will be used to inform future digital health interventions for patient education. Methods: A scoping review using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents <18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. Results: Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes toward receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge. Conclusions: This review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision-making related to genomic information. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts. %M 34951592 %R 10.2196/26684 %U https://www.jmir.org/2021/12/e26684 %U https://doi.org/10.2196/26684 %U http://www.ncbi.nlm.nih.gov/pubmed/34951592 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e27750 %T An Analysis of US Academic Medical Center Websites: Usability Study %A Gale,Jonathan James %A Black,Kameron Collin %A Calvano,Joshua David %A Fundingsland Jr,Edwin Lauritz %A Lai,Deborah %A Silacci,Sara %A He,Shuhan %+ Rocky Vista University College of Osteopathic Medicine, 8401 S Chambers Rd, Parker, CO, 80134, United States, 1 303 373 2008, jonathan.gale@rvu.edu %K website usability %K digital health %K health care website %K academic medical center %K usability testing %K web crawler %D 2021 %7 21.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Health care organizations are tasked with providing web-based health resources and information. Usability refers to the ease of user experience on a website. In this study, we conducted a usability analysis of academic medical centers in the United States, which, to the best of our knowledge, has not been previously carried out. Objective: The primary aims of the study were to the following: (1) adapt a preexisting usability scoring methodology to academic medical centers; (2) apply and test this methodology on a sample set of academic medical center websites; and (3) make recommendations from these results on potential areas of improvements for our sample of academic medical center websites. Methods: All website usability testing took place from June 1, 2020, to December 15, 2020. We replicated a methodology developed in previous literature and applied it to academic medical centers. Our sample included 73 US academic medical centers. Usability was split into four broad categories: accessibility (the ability of those with low levels of computer literacy to access and navigate the hospital’s website); marketing (the ability of websites to be found through search engines and the relevance of descriptions to the links provided); content quality (grammar, frequency of information updates, material relevancy, and readability); and technology (download speed, quality of the programming code, and website infrastructure). Using these tools, we scored each website in each category. The composite of key factors in each category contributed to an overall “general usability” score for each website. An overall score was then calculated by applying a weighted percentage across all factors and was used for the final “overall usability” ranking. Results: The category with the highest average score was technology, with a 0.82 (SD 0.068, SE 0.008). The lowest-performing category was content quality, with an average of 0.22 (SD 0.069, SE 0.008). As these numbers reflect weighted percentages as an integer, the higher the score, the greater the overall usability in that category. Conclusions: Our data suggest that technology, on average, was the highest-scored variable among academic medical center websites. Because website functionality is essential to a user’s experience, it is justified that academic medical centers invest in optimal website performance. The overall lowest-scored variable was content quality. A potential reason for this may be that academic medical center websites are usually larger in size, making it difficult to monitor the increased quantity of content. An easy way to improve this variable is to conduct more frequent website audits to assess readability, grammar, and relevance. Marketing is another area in which these organizations have potential for improvement. Our recommendation is that organizations utilize search engine optimization techniques to improve their online visibility and discoverability. %M 34932015 %R 10.2196/27750 %U https://www.jmir.org/2021/12/e27750 %U https://doi.org/10.2196/27750 %U http://www.ncbi.nlm.nih.gov/pubmed/34932015 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 12 %P e30909 %T A Modern Flexitarian Dietary Intervention Incorporating Web-Based Nutrition Education in Healthy Young Adults: Protocol for a Randomized Controlled Trial %A Braakhuis,Andrea %A Gillies,Nicola %A Worthington,Anna %A Knowles,Scott %A Conner,Tamlin %A Roy,Rajshri %A Pham,Toan %A Bermingham,Emma %A Cameron-Smith,David %+ Discipline of Nutrition, Faculty of Medical and Health Science, The University of Auckland, 85 Park Road, Grafton, Auckland, 1100, New Zealand, 64 0223502926, a.braakhuis@auckland.ac.nz %K protein %K meat %K vegetarian %K eating patterns %K diet %K nutrition %K dietary restrictions %K biomarkers %K health %K well-being %K macronutrients %K micronutrients %D 2021 %7 21.12.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: The trend of flexitarian eating patterns is on the rise, with young adults among the biggest adopters claiming health and environmental reasons to reduce red meat intake. Nutrient-dense meat and animal products are often the lynchpin of these diets, even when consumed only occasionally and in moderate amounts. Red meat provides forms and concentrations of essential proteins, lipids, and micronutrients that are scarce in exclusively vegetarian regimens. Objective: The aim of this study is to consider the effects of moderate consumption of lean red meat as part of an otherwise vegetarian balanced diet and its impact on biomarkers of sustained health and well-being. Methods: A cohort of healthy, young (20-34 years old, n=80) male and female participants will take part in a 2-arm, parallel randomized controlled trial (RCT) for a duration of 12 weeks, with a 3-month posttrial follow-up. The trial will commence with a 2-week assessment period followed by allocation to the intervention arms. The intervention will include the consumption of red meat or meat alternatives 3 times per week for 10 weeks. Blood samples of the participants will be collected to measure changes in erythrocyte fatty acid distribution, circulating amino acids, neurotransmitters, markers of mineral status, and inflammatory markers. Questionnaires to assess well-being and mental health will be undertaken every 2 weeks. Body composition, physical function, and blood parameters will be assessed at allocation (t0), week 5 into the intervention (t5), and post intervention (t10). Results: The protocol has been developed using the SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) checklist and the outcomes will be reported in accordance with the CONSORT (Consolidated Standards of Reporting Trials) guidelines. The trial was approved by the New Zealand Ministry of Health’s Health and Disability Ethics Committees (protocol 20/STH/157). The results of this study will be communicated via publication. Conclusions: To our knowledge, this is the first RCT investigating the overarching health consequences of consuming pasture-fed red meat or no meat as part of a healthy diet. Trial Registration: ClinicalTrials.gov NCT04869163; https://clinicaltrials.gov/ct2/show/NCT04869163 International Registered Report Identifier (IRRID): PRR1-10.2196/30909 %M 34931994 %R 10.2196/30909 %U https://www.researchprotocols.org/2021/12/e30909 %U https://doi.org/10.2196/30909 %U http://www.ncbi.nlm.nih.gov/pubmed/34931994 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 12 %P e33116 %T Augmenting the Referral Pathway for Retinal Services Among Patients With Diabetes Mellitus at Reiyukai Eiko Masunaga Eye Hospital, Nepal: Protocol for a Nonrandomized, Pre–Post Intervention Study %A Shrestha,Ruchi %A Singh,Prerana %A Dhakhwa,Parami %A Tetali,Shailaja %A Batchu,Tripura %A Shrestha Thapa,Pragati %+ Department of Vitreoretina, Reiyukai Eiko Masunaga Eye Hospital, Banepa-6, Kavre, Banepa, 977, Nepal, 977 9847027650, drruchishrestha@gmail.com %K diabetes mellitus %K diabetic retinopathy %K Nepal %K health education %K study protocol %D 2021 %7 17.12.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Diabetic retinopathy (DR) is an important public health issue in Nepal with a huge social and economic impact. Despite the availability of retinal services, people may not access them because of the lack of knowledge about DR and poor referral systems. Published studies on referral pathways in Nepal are scarce. Improving DR awareness among general physicians has the potential to address these challenges. Objective: The aim of this study is to evaluate the effect of a health education intervention on health personnel, establish a referral pathway, and assess the impact of the intervention on the attendance of patients with diabetes mellitus for retinal screening at Reiyukai Eiko Masunaga Eye Hospital in Nepal. Methods: This is a nonrandomized, pre- and postintervention study. Health education on DR will be provided to selected health personnel of the intervention hospital (Scheer Memorial) using information education and communication (IEC) materials in the form of PowerPoint presentations, posters, pamphlets, videos, and pre- and postevaluation questionnaires along with referral slip. Pre- and postevaluation will be undertaken during the study period. Data will be analyzed using MS Excel and Epi Info 7. Results: The ethical approval for this study has been obtained from the Ethical Review Board of the Nepal Health Research Council (ERB Protocol Registration Number # 582/2020P). The study is expected to be completed in 18 months from the start of the project. The baseline data collection was from June to January 2020 for a period of 8 months. The postintervention data collection was from February to September 2021 for a period of 8 months. The last 2 months are planned for data analysis and report writing. Conclusions: Health education intervention could be a low-cost solution to improve the awareness, access, and utilization of retinal health care services; this is an understudied topic in Nepal. Working closely with the stakeholders, this study will evaluate the role of health education interventions (which are already validated in other low-income settings) to strengthen referral and reduce the burden of DR in Nepal. Trial Registration: ClinicalTrials.gov NCT04829084; https://clinicaltrials.gov/ct2/show/NCT04829084 International Registered Report Identifier (IRRID): DERR1-10.2196/33116 %M 34927596 %R 10.2196/33116 %U https://www.researchprotocols.org/2021/12/e33116 %U https://doi.org/10.2196/33116 %U http://www.ncbi.nlm.nih.gov/pubmed/34927596 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e26794 %T Effects of Person-Centered Care Using a Digital Platform and Structured Telephone Support for People With Chronic Obstructive Pulmonary Disease and Chronic Heart Failure: Randomized Controlled Trial %A Ali,Lilas %A Wallström,Sara %A Fors,Andreas %A Barenfeld,Emmelie %A Fredholm,Eva %A Fu,Michael %A Goudarzi,Mahboubeh %A Gyllensten,Hanna %A Lindström Kjellberg,Irma %A Swedberg,Karl %A Vanfleteren,Lowie E G W %A Ekman,Inger %+ Sahlgrenska Academy Institute of Health and Care Sciences, University of Gothenburg, Box 457, Gothenburg, 405 30, Sweden, 46 707587856, lilas.ali@gu.se %K chronic heart failure %K chronic obstructive pulmonary disease %K digital platform %K eHealth %K patient-centered care %K person-centered care %K randomized controlled trial %K telehealth %D 2021 %7 13.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF) are characterized by severe symptom burden and common acute worsening episodes that often require hospitalization and affect prognosis. Although many studies have shown that person-centered care (PCC) increases self-efficacy in patients with chronic conditions, studies on patients with COPD and CHF treated in primary care and the effects of PCC on the risk of hospitalization in these patients are scarce. Objective: The aim of this study is to evaluate the effects of PCC through a combined digital platform and telephone support for people with COPD and CHF. Methods: A multicenter randomized trial was conducted from 2018 to 2020. A total of 222 patients were recruited from 9 primary care centers. Patients diagnosed with COPD, CHF, or both and with internet access were eligible. Participants were randomized into either usual care (112/222, 50.5%) or PCC combined with usual care (110/222, 49.5%). The intervention’s main component was a personal health plan cocreated by the participants and assigned health care professionals. The health care professionals called the participants in the intervention group and encouraged narration to establish a partnership using PCC communication skills. A digital platform was used as a communication tool. The primary end point, divided into 2 categories (improved and deteriorated or unchanged), was a composite score of change in general self-efficacy and hospitalization or death 6 months after randomization. Data from the intention-to-treat group at 3- and 6-month follow-ups were analyzed. In addition, a per-protocol analysis was conducted on the participants who used the intervention. Results: No significant differences were found in composite scores between the groups at the 3- and 6-month follow-ups. However, the per-protocol analysis of the 3-month follow-up revealed a significant difference in composite scores between the study groups (P=.047), although it was not maintained until the end of the 6-month follow-up (P=.24). This effect was driven by a change in general self-efficacy from baseline. Conclusions: PCC using a combined digital platform and structured telephone support seems to be an option to increase the short-term self-efficacy of people with COPD and CHF. This study adds to the knowledge of conceptual innovations in primary care to support patients with COPD and CHF. Trial Registration: ClinicalTrials.gov NCT03183817; http://clinicaltrials.gov/ct2/show/NCT03183817 %M 34898447 %R 10.2196/26794 %U https://www.jmir.org/2021/12/e26794 %U https://doi.org/10.2196/26794 %U http://www.ncbi.nlm.nih.gov/pubmed/34898447 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 6 %N 4 %P e30603 %T Cocreation of Massive Open Online Courses to Improve Digital Health Literacy in Diabetes: Pilot Mixed Methods Study %A Alvarez-Perez,Yolanda %A Perestelo-Perez,Lilisbeth %A Rivero-Santana,Amado %A Wagner,Ana M %A Torres-Castaño,Alezandra %A Toledo-Chávarri,Ana %A Duarte-Díaz,Andrea %A Alvarado-Martel,Dácil %A Piccini,Barbara %A Van den Broucke,Stephan %A Vandenbosch,Jessica %A González-González,Carina %A Perello,Michelle %A Serrano-Aguilar,Pedro %A , %+ Canary Islands Health Research Institute Foundation (FIISC), Camino Candelaria, s/n, CS El Chorrillo, Tenerife, 38109, Spain, 34 922 478 267, yolanda.alvarezperez@sescs.es %K diabetes %K digital health literacy %K health education %K MOOC %D 2021 %7 13.12.2021 %9 Original Paper %J JMIR Diabetes %G English %X Background: Self-management education is a fundamental aspect in the health care of people with diabetes to develop the necessary skills for the improvement of health outcomes. Patients are required to have the competencies to manage electronic information resources—that is, an appropriate level of digital health literacy. The European project IC-Health aimed to improve digital health literacy among people with diabetes through the cocreation of massive open online courses (MOOCs). Objective: We report the preliminary results obtained in 3 participating countries in the IC-Health project (Italy, Spain, and Sweden) regarding (1) experience of the participants during the cocreation process of MOOCs, (2) perceived changes in their digital health literacy level after using MOOCs, and (3) a preliminary assessment of the acceptability of MOOCs. Methods: The cocreation of the MOOCs included focus groups with adults and adolescents with diabetes and the creation of independent communities of practice for type 1 diabetes and type 2 diabetes participants aimed to co-design the MOOCs. Quantitative measures of the acceptability of MOOCs, experience in the cocreation process, and increase in digital health literacy (dimensions of finding, understanding, and appraisal) were assessed. Results: A total of 28 participants with diabetes participated in focus groups. Adults and adolescents agreed that the internet is a secondary source of health-related information. A total of 149 participants comprised the diabetes communities of practice. A total of 9 MOOCs were developed. Acceptability of the MOOCs and the cocreation experience were positively valued. There was a significant improvement in digital health literacy in both adults and adolescents after using MOOCs (P<.001). Conclusions: Although the results presented on self-perceived digital health literacy are preliminary and exploratory, this pilot study suggests that IC-Health MOOCs represent a promising tool for the medical care of diabetes, being able to help reduce the limitations associated with low digital health literacy and other communication barriers in the diabetes population. %M 34898453 %R 10.2196/30603 %U https://diabetes.jmir.org/2021/4/e30603 %U https://doi.org/10.2196/30603 %U http://www.ncbi.nlm.nih.gov/pubmed/34898453 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e22557 %T Comparing the Effects of Gamification and Teach-Back Training Methods on Adherence to a Therapeutic Regimen in Patients After Coronary Artery Bypass Graft Surgery: Randomized Clinical Trial %A Ghorbani,Banafsheh %A Jackson,Alun C %A Noorchenarboo,Mohammad %A Mandegar,Mohammad H %A Sharifi,Farshad %A Mirmoghtadaie,Zohrehsadat %A Bahramnezhad,Fatemeh %+ School of Nursing & Midwifery, Nursing and Midwifery Care Research Center, Spiritual Health Group, Research Center of Quran, Hadith and Medicine, Tehran University of Medical Sciences, Nosrat St., Tohid Sq., Tehran, 141973317, Iran, 98 2166914368, bahramnezhad@sina.tums.ac.ir %K teach back %K gamification %K treatment regimen %K coronary artery bypass graft %K patient training %D 2021 %7 10.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Patients undergoing coronary artery bypass graft surgery (CABGS) may fail to adhere to their treatment regimen for many reasons. Among these, one of the most important reasons for nonadherence is the inadequate training of such patients or training using inappropriate methods. Objective: This study aimed to compare the effect of gamification and teach-back training methods on adherence to a therapeutic regimen in patients after CABGS. Methods: This randomized clinical trial was conducted on 123 patients undergoing CABGS in Tehran, Iran, in 2019. Training was provided to the teach-back group individually. In the gamification group, an app developed for the purpose was installed on each patient’s smartphone, with training given via this device. The control group received usual care, or routine training. Adherence to the therapeutic regimen was assessed using a questionnaire on adherence to a therapeutic regimen (physical activity and dietary regimen) and an adherence scale as a pretest and a 1-month posttest. Results: One-way analysis of variance (ANOVA) for comparing the mean scores of teach-back and gamification training methods showed that the mean normalized scores for the dietary regimen (P<.001, F=71.80), movement regimen (P<.001, F=124.53), and medication regimen (P<.001, F=9.66) before and after intervention were significantly different between the teach-back, gamification, and control groups. In addition, the results of the Dunnett test showed that the teach-back and gamification groups were significantly different from the control group in all three treatment regimen methods. There was no statistically significant difference in adherence to the therapeutic regimen between the teach-back and control groups. Conclusions: Based on the results of this study, the use of teach-back and gamification training approaches may be suggested for patients after CABGS to facilitate adherence to the therapeutic regimen. Trial Registration: Iranian Registry of Clinical Trials IRCT20111203008286N8; https://en.irct.ir/trial/41507 %M 34890346 %R 10.2196/22557 %U https://www.jmir.org/2021/12/e22557 %U https://doi.org/10.2196/22557 %U http://www.ncbi.nlm.nih.gov/pubmed/34890346 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 9 %N 12 %P e31092 %T Long-Term Effectiveness of a Decision Support App (Pink Journey) for Women Considering Breast Reconstruction Surgery: Pilot Randomized Controlled Trial %A Fang,Su-Ying %A Lin,Pin-Jun %A Kuo,Yao-Lung %+ Department of Nursing, College of Medicine, National Cheng Kung University, Number 1, University Road, Tainan, 701, Taiwan, 886 62353535 ext 6271, suying@ncku.edu.tw %K breast cancer %K breast reconstruction surgery %K decision aid %K decision support %K mHealth %K app %K women %D 2021 %7 10.12.2021 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Various kinds of breast reconstruction (BR) options, including implants and autologous, and surgery techniques, including traditional and endoscope assisted, can be used to perform surgery. All options have their own advantages and disadvantages. Women decide on an option depending on the values and preferences they emphasize. Lacking knowledge about BR or having decision difficulties during the treatment decision process makes women experience more decision regret, psychological distress, and poor body image. Delivering decision support with a values clarification exercise using eHealth approaches would be beneficial for patient outcomes. Objective: This study aims to examine the effects of a decision support app on decision-making quality and psychological morbidity for women considering BR surgery. Methods: This randomized controlled trial included women who were over 20 years of age and were newly diagnosed with breast cancer and candidates for mastectomy. Women having an option for breast conservation were excluded. After being referred from the outpatient physician, the women provided consent and completed the baseline assessment. Women allocated to the control group (CG) received usual care and were provided with a pamphlet with information about types of surgery and the advantages and disadvantages of different surgery types. Women allocated to the intervention group (IG) were given the same pamphlet and guided to use the Pink Journey app to support their decision. Then they were also prompted to discuss the opinions with their significant others. Finally, the decision-making process of using the app was printed out for women that they could take home. Decision conflict, anxiety, and depression were measured at baseline. At 1 week after the intervention (T1) and at 1 month (T2), 8 months (T3), and 12 months (T4) after surgery, the women completed decision conflict, decision regret, anxiety, depression, and body image scales. An intention-to-treat analysis was performed. Results: From February 2018 to July 2019, 96 women were randomly assigned to the CG (n=48) or the IG (n=48). Results revealed that body image distress declined significantly for the IG but increased for the CG. The interaction of time and group also reached significance, indicating a significant decrease in body image distress from baseline in the IG compared with the CG after the 12th month (T4) follow-up (β=–2.25, standard error=1.01, P=.027). However, there was no significant difference in decision conflict (P=.21-.87), decision regret (P=.44-.55), anxiety (P=.26-.33), and depression (P=.20-.75), indicating that the decrease in these outcomes in the IG was not greater than those in the CG. Conclusions: Although we found no effect on decision conflict, decision regret, anxiety, and depression, a decision aid that combines surgery information and values clarification can help women reduce their body image distress. Trial Registration: ClinicalTrials.gov NCT04190992; https://clinicaltrials.gov/ct2/show/NCT04190992 %M 34890354 %R 10.2196/31092 %U https://mhealth.jmir.org/2021/12/e31092 %U https://doi.org/10.2196/31092 %U http://www.ncbi.nlm.nih.gov/pubmed/34890354 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e21681 %T Evaluating Course Completion, Appropriateness, and Burden in the Understanding Multiple Sclerosis Massive Open Online Course: Cohort Study %A Claflin,Suzi B %A Campbell,Julie A %A Doherty,Kathleen %A Farrow,Maree %A Bessing,Barnabas %A Taylor,Bruce V %+ Menzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, 7000, Australia, 61 0362267728, suzi.claflin@utas.edu.au %K multiple sclerosis %K massive open online course %K health promotion %K eHealth education %K mobile phone %D 2021 %7 7.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Massive open online course (MOOC) research is an emerging field; to date, most research in this area has focused on participant engagement. Objective: The aim of this study is to evaluate both participant engagement and measures of satisfaction, appropriateness, and burden for a MOOC entitled Understanding Multiple Sclerosis (MS) among a cohort of 3518 international course participants. Methods: We assessed the association of key outcomes with participant education level, MS status, caregiver status, sex, and age using summary statistics, and 2-tailed t tests, and chi-square tests. Results: Of the 3518 study participants, 928 (26.37%) were people living with MS. Among the 2590 participants not living with MS, 862 (33.28%) identified as formal or informal caregivers. Our key findings were as follows: the course completion rate among study participants was 67.17% (2363/3518); the course was well received, with 96.97% (1502/1549) of participants satisfied, with an appropriate pitch and low burden (a mean of 2.2 hours engagement per week); people living with MS were less likely than those not living with MS to complete the course; and people with a recent diagnosis of MS, caregivers, and participants without a university education were more likely to apply the material by course completion. Conclusions: The Understanding MS MOOC is fit for purpose; it presents information in a way that is readily understood by course participants and is applicable in their lives. %M 34878985 %R 10.2196/21681 %U https://www.jmir.org/2021/12/e21681 %U https://doi.org/10.2196/21681 %U http://www.ncbi.nlm.nih.gov/pubmed/34878985 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e30855 %T Frequency of Online Health Information Seeking and Types of Information Sought Among the General Chinese Population: Cross-sectional Study %A Xiong,Zihui %A Zhang,Liang %A Li,Zhong %A Xu,Wanchun %A Zhang,Yan %A Ye,Ting %+ School of Medicine and Health Management, Tongji Medical College, Huazhong University of Science and Technology, No 13 Hangkong Rd, Qiaokou District, Wuhan, 430030, China, 86 134 7621 5639, yeting@hust.edu.cn %K online health information seeking %K sociodemographic factors %K information types %K Chinese population %K information seeking behavior %K demography %K China %K online health information %D 2021 %7 2.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The internet is one of the most popular health information resources, and the Chinese constitute one-fifth of the online users worldwide. As internet penetration continues to rise, more details on the Chinese population seeking online health information need to be known based on the current literature. Objective: This study aims to explore the sociodemographic differences in online health information seeking (OHIS), including the frequency of OHIS and the types of online health information sought among the general Chinese population in mainland China. Methods: A cross-sectional study for assessing the residents’ health care needs with self-administered questionnaires was implemented in 4 counties and districts in China from July 2018 to August 2018. Pearson’s chi-square test was used to identify the sociodemographic differences between infrequent and frequent online health information seekers. We also performed binary logistic regression for the 4 types of online health information as the dependent variables and the sociodemographic factors as the independent variables. Results: Compared with infrequent online health information seekers, frequent seekers were more likely to be female (infrequent: 1654/3318; 49.85%; frequent: 1015/1831, 55.43%), older (over 60 years old; infrequent: 454/3318, 13.68%; frequent: 282/1831, 15.40%), married (infrequent: 2649/3318, 79.84%; frequent: 1537/1831, 83.94%), and better educated (bachelor’s or above; infrequent: 834/3318, 25.14%; frequent: 566/1831, 30.91%). They were also more likely to earn a higher income (over RMB ¥50k [RMB ¥1=US $0.15641]; infrequent: 1139/3318, 34.33%; frequent: 710/1831, 34.78%), have commercial health insurance (infrequent: 628/3318, 18.93%; frequent: 470/1831, 25.67%), and have reported illness in the past 12 months (infrequent: 659/3318, 19.86%; frequent: 415/1831, 22.67%). Among the 4 health information types, health science popularization was the most searched for information by Chinese online health information seekers (3654/5149, 70.79%), followed by healthy behaviors (3567/5149, 69.28%), traditional Chinese medicine (1931/5149, 37.50%), and medical concerns (1703/5149, 33.07%). The binary logistic regression models showed that males were less likely to seek information on healthy behaviors (adjusted odds ratio [AOR] 0.69, 95% CI 0.61-0.78) and traditional Chinese medicine (AOR 0.64, 95% CI 0.57-0.73), and respondents who had at least 1 chronic disease were more likely to seek information on medical concerns (AOR 1.27, 95% CI 1.07-1.51) and traditional Chinese medicine (AOR 1.26, 95% CI 1.06-1.49). Conclusions: Sociodemographic factors were associated with the frequency of OHIS and types of information sought among the general Chinese population. The results remind providers of online health information to consider the needs of specific population groups when tailoring and presenting health information to the target population. %M 34860676 %R 10.2196/30855 %U https://www.jmir.org/2021/12/e30855 %U https://doi.org/10.2196/30855 %U http://www.ncbi.nlm.nih.gov/pubmed/34860676 %0 Journal Article %@ 2561-9128 %I JMIR Publications %V 4 %N 2 %P e26597 %T Patient Engagement in the Design of a Mobile Health App That Supports Enhanced Recovery Protocols for Cardiac Surgery: Development Study %A Chudyk,Anna M %A Ragheb,Sandra %A Kent,David %A Duhamel,Todd A %A Hyra,Carole %A Dave,Mudra G %A Arora,Rakesh C %A Schultz,Annette SH %+ Department of Family Medicine, Rady Faculty of Health Sciences, University of Manitoba, CR3023-369 Tache Avenue, Winnipeg, MB, R2H 2A6, Canada, 1 7783876969, anna.chudyk@umanitoba.ca %K cardiac surgery %K perioperative care %K enhanced recovery protocols %K mobile app %K smartphone app %K mHealth %K development %K patient and public involvement %K patient engagement in research %D 2021 %7 30.11.2021 %9 Original Paper %J JMIR Perioper Med %G English %X Background: Despite the importance of their perspectives, end users (eg, patients, caregivers) are not typically engaged by academic researchers in the development of mobile health (mHealth) apps for perioperative cardiac surgery settings. Objective: The aim of this study was to describe a process for and the impact of patient engagement in the development of an mHealth app that supports patient and caregiver involvement with enhanced recovery protocols during the perioperative period of cardiac surgery. Methods: Engagement occurred at the level of consultation and took the form of an advisory panel. Patients who underwent cardiac surgery (2017-2018) at St. Boniface Hospital (Winnipeg, Manitoba) and their caregivers were approached for participation. A qualitative exploration determined the impact of patient engagement on the development (ie, design and content) of the mHealth app. This included a description of (1) the key messages generated by the advisory panel, (2) how key messages were incorporated into the development of the mHealth app, and (3) feedback from the developers of the mHealth app about the key messages generated by the advisory panel. Results: The advisory panel (N=10) generated 23 key messages to guide the development of the mHealth app. Key design-specific messages (n=7) centered around access, tracking, synchronization, and reminders. Key content-specific messages (n=16) centered around medical terms, professional roles, cardiac surgery procedures and recovery, educational videos, travel, nutrition, medications, resources, and physical activity. This information was directly incorporated into the design of the mHealth app as long as it was supported by the existing functionalities of the underlying platform. For example, the platform did not support the scheduling of reminders by users, identifying drug interactions, or synchronizing with other devices. The developers of the mHealth app noted that key messages resulted in the integration of a vast range and volume of information and resources instead of ones primarily focused on surgical information, content geared toward expectations management, and an expanded focus to include caregivers and other family members, so that these stakeholders may be directly included in the provision of information, allowing them to be better informed, prepare along with the patient, and be involved in recovery planning. Conclusions: Patient engagement may facilitate the development of a detail-oriented and patient-centered mHealth app whose design and content are driven by the lived experiences of end users. %M 34851299 %R 10.2196/26597 %U https://periop.jmir.org/2021/2/e26597 %U https://doi.org/10.2196/26597 %U http://www.ncbi.nlm.nih.gov/pubmed/34851299 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 11 %P e26252 %T mHealth for Anemia Reduction: Protocol for an Entertainment Education–Based Dual Intervention %A Pant,Ichhya %A Rimal,Rajiv %A Yilma,Hagere %A Bingenheimer,Jeffrey %A Sedlander,Erica %A Behera,Sibabrata %+ Department of Prevention and Community Health, School of Public Health, George Washington University, 950 New Hampshire Ave NW #2, Washington, DC, 20052, United States, 1 4044619851, ipant@gwu.edu %K mHealth %K interactive %K voice response %K entertainment %K education %K rural %K anemia %K bystander %K violence against women %D 2021 %7 22.11.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: More than half of the women of reproductive age (aged 15-49 years) are anemic in India. The uptake of and adherence to iron folic acid (IFA) supplements remain low despite sustained efforts to increase their use. With India’s burgeoning digital environment, mobile phones offer a potential medium for increasing their uptake, especially when combined with interactive voice messages that deliver entertaining stories infused with norms-based educational messages. Objective: This study aims to investigate whether a norms-based entertainment education mobile health intervention can increase self-efficacy for IFA adherence among women of reproductive age in Odisha, India. Methods: Mobile reduction in anemia through normative innovations (mRANI) is a randomized 2-arm study that includes assessments before and after the intervention. All study participants will be recruited from the intervention arm of the parent reduction in anemia through normative innovations trial only. Although the usual practice is to randomize participants either to a treatment arm or a usual care control arm, we will assign the mRANI control group to another entertainment education–based treatment group that is designed to improve bystander intervention to reduce violence against women. Data collection for the mRANI study is embedded in the parent trial and will include baseline and end line assessments. The primary outcomes are self-efficacy for IFA adherence and violence against women–related bystander intervention. The inclusion criteria for the mRANI study are participation in the parent trial and phone ownership. Women (approximately n=400) who meet the mRANI inclusion criteria will be randomly assigned to the IFA arm or the bystander arm. Ordinary least squares regression with robust SEs will be conducted to assess between-group comparisons at the end line. A mediation analysis will be conducted to examine whether social norms and interactivity mediate the relationship between intervention exposure and primary outcomes in both arms. Real-time monitoring data will offer insights into intervention receptivity and audience engagement. Results: Data collection for the mRANI study is integrated within the parent trial. Household surveys were conducted between February and March of 2021. Responses on the mRANI study’s primary and secondary outcomes were collected from 381 participants. The data analysis is expected to be completed by October 2021. Conclusions: This study will provide evidence on whether a mobile health norms–based entertainment education intervention can increase self-efficacy for IFA adherence and violence against women–related bystander intervention. International Registered Report Identifier (IRRID): PRR1-10.2196/26252 %M 34812735 %R 10.2196/26252 %U https://www.researchprotocols.org/2021/11/e26252 %U https://doi.org/10.2196/26252 %U http://www.ncbi.nlm.nih.gov/pubmed/34812735 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 6 %N 4 %P e32320 %T Differences in Secure Messaging, Self-management, and Glycemic Control Between Rural and Urban Patients: Secondary Data Analysis %A Robinson,Stephanie A %A Netherton,Dane %A Zocchi,Mark %A Purington,Carolyn %A Ash,Arlene S %A Shimada,Stephanie L %+ Center for Healthcare Organization and Implementation Research, VA Bedford Healthcare System, Bldg 70, 200 Springs Rd, Bedford, MA, 01730, United States, 1 5712767178, stephanie.robinson5@va.gov %K diabetes %K secure messaging %K rural %K self-management %K patient portal %K urban %K data %K access %K risk %K portal %K eHealth %K digital health %K messaging %K support %K accessible %K cross-sectional %K veteran %D 2021 %7 19.11.2021 %9 Original Paper %J JMIR Diabetes %G English %X Background: Rural patients with diabetes have difficulty accessing care and are at higher risk for poor diabetes management. Sustained use of patient portal features such as secure messaging (SM) can provide accessible support for diabetes self-management. Objective: This study explored whether rural patients’ self-management and glycemic control was associated with the use of SM. Methods: This secondary, cross-sectional, mixed methods analysis of 448 veterans with diabetes used stratified random sampling to recruit a diverse sample from the United States (rural vs urban and good vs poor glycemic control). Administrative, clinical, survey, and interview data were used to determine patients’ rurality, use of SM, diabetes self-management behaviors, and glycemic control. Moderated mediation analyses assessed these relationships. Results: The sample was 51% (n=229) rural and 49% (n=219) urban. Mean participant age was 66.4 years (SD 7.7 years). More frequent SM use was associated with better diabetes self-management (P=.007), which was associated with better glycemic control (P<.001). Among rural patients, SM use was indirectly associated with better glycemic control through improved diabetes self-management (95% CI 0.004-0.927). These effects were not observed among urban veterans with diabetes (95% CI –1.039 to 0.056). Rural patients were significantly more likely than urban patients to have diabetes-related content in their secure messages (P=.01). Conclusions: More frequent SM use is associated with engaging in diabetes self-management, which, in turn, is associated with better diabetes control. Among rural patients with diabetes, SM use is indirectly associated with better diabetes control. Frequent patient-team communication through SM about diabetes-related content may help rural patients with diabetes self-management, resulting in better glycemic control. %M 34807834 %R 10.2196/32320 %U https://diabetes.jmir.org/2021/4/e32320 %U https://doi.org/10.2196/32320 %U http://www.ncbi.nlm.nih.gov/pubmed/34807834 %0 Journal Article %@ 2561-1011 %I JMIR Publications %V 5 %N 2 %P e27016 %T Usability and Perceived Usefulness of the AFib 2gether Mobile App in a Clinical Setting: Single-Arm Intervention Study %A Kapoor,Alok %A Hayes,Anna %A Patel,Jay %A Patel,Harshal %A Andrade,Andreza %A Mazor,Kathleen %A Possidente,Carl %A Nolen,Kimberly %A Hegeman-Dingle,Rozelle %A McManus,David %+ Department of Medicine, University of Massachusetts Chan Medical School, 55 North Lake Ave, Worcester, MA, 01655, United States, 1 9178564538, alok.kapoor@umassmemorial.org %K shared decision-making %K mobile health %K stroke risk %K anticoagulation risk %K anticoagulation %K atrial fibrillation %K anticoagulation therapy %K atrial flutter %K mobile phone %D 2021 %7 19.11.2021 %9 Original Paper %J JMIR Cardio %G English %X Background: Although the American Heart Association and other professional societies have recommended shared decision-making as a way for patients with atrial fibrillation (AF) or atrial flutter to make informed decisions about using anticoagulation (AC), the best method for facilitating shared decision-making remains uncertain. Objective: The aim of this study is to assess the AFib 2gether mobile app for usability, perceived usefulness, and the extent and nature of shared decision-making that occurred for clinical encounters between patients with AF and their cardiology providers in which the app was used. Methods: We identified patients visiting a cardiology provider between October 2019 and May 2020. We measured usability from patients and providers using the Mobile App Rating Scale. From the 8 items of the Mobile App Rating Scale, we reported the average score (out of 5) for domains of functionality, esthetics, and overall quality. We administered a 3-item questionnaire to patients relating to their perceived usefulness of the app and a separate 3-item questionnaire to providers to measure their perceived usefulness of the app. We performed a chart review to track the occurrence of AC within 6 months of the index visit. We also audio recorded a subset of the encounters to identify evidence of shared decision-making. Results: We facilitated shared decision-making visits for 37 patients visiting 13 providers. In terms of usability, patients’ average ratings of functionality, esthetics, and overall quality were 4.51 (SD 0.61), 4.26 (SD 0.51), and 4.24 (SD 0.89), respectively. In terms of usefulness, 41% (15/37) of patients agreed that the app improved their knowledge regarding AC, and 62% (23/37) agreed that the app helped clarify to their provider their preferences regarding AC. Among providers, 79% (27/34) agreed that the app helped clarify their patients’ preferences, 82% (28/34) agreed that the app saved them time, and 59% (20/34) agreed that the app helped their patients make decisions about AC. In addition, 32% (12/37) of patients started AC after their shared decision-making visits. We audio recorded 25 encounters. Of these, 84% (21/25) included the mention of AC for AF, 44% (11/25) included the discussion of multiple options for AC, 72% (18/25) included a provider recommendation for AC, and 48% (12/25) included the evidence of patient involvement in the discussion. Conclusions: Patients and providers rated the app with high usability and perceived usefulness. Moreover, one-third of the patients began AC, and approximately 50% (12/25) of the encounters showed evidence of patient involvement in decision-making. In the future, we plan to study the effect of the app on a larger sample and with a controlled study design. Trial Registration: ClinicalTrials.gov NCT04118270; https://clinicaltrials.gov/ct2/show/NCT04118270 International Registered Report Identifier (IRRID): RR2-21986 %M 34806997 %R 10.2196/27016 %U https://cardio.jmir.org/2021/2/e27016 %U https://doi.org/10.2196/27016 %U http://www.ncbi.nlm.nih.gov/pubmed/34806997 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 11 %P e30191 %T Health Education Through a Campaign and mHealth to Enhance Knowledge and Quality of Life Among Patients With Chronic Kidney Disease in Bangladesh: Protocol for a Randomized Controlled Trial %A Sarker,Mohammad Habibur Rahman %A Moriyama,Michiko %A Rashid,Harun Ur %A Rahman,Md Moshiur %A Chisti,Mohammod Jobayer %A Das,Sumon Kumar %A Jahan,Yasmin %A Saha,Samir Kumar %A Arifeen,Shams El %A Ahmed,Tahmeed %A Faruque,A S G %+ Graduate School of Biomedical and Health Sciences, Hiroshima University, 1-2-3, Kasumi, Minami-ku, Hiroshima, 734-8553, Japan, 81 09028602013, d185558@hiroshima-u.ac.jp %K chronic kidney disease %K campaign %K mHealth %K knowledge %K Bangladesh %D 2021 %7 19.11.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Despite the growing burden of chronic kidney disease (CKD), disease knowledge and understanding are still lacking, especially in Bangladesh. Objective: The aim of this study was to evaluate the outcome of a health education intervention in order to enhance knowledge, health-related quality of life (QOL), and motivation regarding healthy lifestyles among rural and periurban adults suffering from CKD. Methods: A parallel-group (1:1) randomized controlled trial is ongoing in the Mirzapur subdistrict, Bangladesh, where two groups of patients with CKD are being compared. Patients aged 18 years and over with CKD (stages 1-3) were enrolled in November 2020. Patients were randomly allocated into either the intervention group (n=63) or the control group (n=63). The control group received usual treatment, while the intervention group received health education through a CKD campaign facilitated by a nephrologist and via mHealth (ie, periodic mobile phone calls) from community health workers. Both groups were followed up for a period of 6 months. The primary endpoint is patients’ increased knowledge measured using the Chronic Kidney Disease Knowledge Questionnaire. The secondary endpoints are improved QOL measured using the standardized EuroQol 5-Dimension 5-Level (EQ-5D-5L) questionnaire as well as improvements in the levels of blood pressure, BMI, serum creatinine, fasting blood sugar, hemoglobin, cholesterol, high-density lipoprotein cholesterol, triglyceride, serum uric acid, blood urea nitrogen, and albumin to creatinine ratio. Results: Enrollment of participants began in November 2020; the intervention and follow-up were completed in May 2021. We enrolled 126 patients in the study. Patients’ mean ages were 57.97 (SD 15.03) years in the control group and 57.32 (SD 14.37) years in the intervention group. There were 45 out of 63 (71%) females in the control group and 38 out of 63 (60%) females in the intervention group. In addition, there were 38 out of 63 (60%) literate patients in the control group and 33 out of 63 (52%) literate patients in the intervention group. Conclusions: It is expected that a combined approach, incorporating both a CKD campaign and mHealth, for health education may be an effective tool for increasing knowledge and improving QOL among patients with CKD. Trial Registration: ClinicalTrials.gov NCT04094831; https://clinicaltrials.gov/ct2/show/NCT04094831 International Registered Report Identifier (IRRID): DERR1-10.2196/30191 %M 34806998 %R 10.2196/30191 %U https://www.researchprotocols.org/2021/11/e30191 %U https://doi.org/10.2196/30191 %U http://www.ncbi.nlm.nih.gov/pubmed/34806998 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 11 %P e28846 %T Informing Content and Feature Design of a Parent-Focused Human Papillomavirus Vaccination Digital Behavior Change Intervention: Synchronous Text-Based Focus Group Study %A Becker,Elisabeth RB %A Shegog,Ross %A Savas,Lara S %A Frost,Erica L %A Healy,C Mary %A Spinner,Stanley W %A Vernon,Sally W %+ The University of Texas Health Science Center at Houston, 7000 Fannin St, Houston, TX, 77030, United States, 1 713 500 4472, elisabeth.becker@uth.tmc.edu %K human papillomavirus %K vaccination %K qualitative %K focus groups %K sexually transmitted infection %D 2021 %7 19.11.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Human papillomavirus (HPV) is a common and preventable sexually transmitted infection; however, vaccination rates in the United States among the target age group, which is 11-12 years, are lower than national goals. Interventions that address the barriers to and facilitators of vaccination are important for improving HPV vaccination rates. Web-based, text-based focus groups are becoming a promising method that may be well suited for conducting formative research to inform the design of digital behavior change intervention (DBCI) content and features that address HPV vaccination decision-making. Objective: This study aims to explore parental HPV vaccination decision-making processes using a web-based, text-based focus group protocol to inform content and feature recommendations for an HPV prevention DBCI. Methods: We conducted 4 web-based, text-based synchronous focus groups via Skype with the parents of patients aged 11-13 years within a large urban US pediatric clinic network. Results: The 22 parents were mostly female, White, non-Hispanic college graduates, and they mostly had private health insurance for their children. Approximately half (14/25, 56%) of the parents' 11-13 year old children had initiated HPV vaccination. Most parents had experience using Skype (19/22, 86%). Approximately half (8/17, 47%) of parents expressed no preference for the focus group format, whereas 47% (8/17) requested a text-only chat format and 6% (1/17) requested an audiovisual format. The three main themes from the qualitative data were barriers to HPV vaccination, facilitators of HPV vaccination, and suggestions for improving the HPV vaccination clinic experience. A total of 11 intervention content and feature recommendations emerged from the themes, including addressing HPV knowledge barriers using trusted sources, designing for a family audience, focusing on the framing of messages, reporting reputable HPV research in a comprehensible format, and expanding the clinic visit experience. Conclusions: Synchronous text-based focus groups are feasible for conducting formative research on HPV vaccination decision-making. Among well-educated and well-resourced parents, there are barriers such as misinformation and facilitators such as pediatrician recommendations that influence HPV vaccination decision-making. Parents want to conduct their own HPV research as well as receive relevant HPV vaccination advice from their child’s pediatrician. In addition, parents want an enhanced clinic visit experience that lets them access and connect to tailored information before and after clinic visits. The results gathered provide guidance for content and features that may inform a more responsive DBCI to address HPV vaccination decision-making among parents. %M 34806991 %R 10.2196/28846 %U https://formative.jmir.org/2021/11/e28846 %U https://doi.org/10.2196/28846 %U http://www.ncbi.nlm.nih.gov/pubmed/34806991 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 11 %P e29447 %T Patient Interactions With an Automated Conversational Agent Delivering Pretest Genetics Education: Descriptive Study %A Chavez-Yenter,Daniel %A Kimball,Kadyn E %A Kohlmann,Wendy %A Lorenz Chambers,Rachelle %A Bradshaw,Richard L %A Espinel,Whitney F %A Flynn,Michael %A Gammon,Amanda %A Goldberg,Eric %A Hagerty,Kelsi J %A Hess,Rachel %A Kessler,Cecilia %A Monahan,Rachel %A Temares,Danielle %A Tobik,Katie %A Mann,Devin M %A Kawamoto,Kensaku %A Del Fiol,Guilherme %A Buys,Saundra S %A Ginsburg,Ophira %A Kaphingst,Kimberly A %+ Department of Communication, University of Utah, 255 S Central Campus Drive, Salt Lake City, UT, 84112, United States, 1 801 213 5724, daniel.chavez-yenter@utah.edu %K cancer %K genetic testing %K virtual conversational agent %K user interaction %K smartphone %K mobile phone %D 2021 %7 18.11.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Cancer genetic testing to assess an individual’s cancer risk and to enable genomics-informed cancer treatment has grown exponentially in the past decade. Because of this continued growth and a shortage of health care workers, there is a need for automated strategies that provide high-quality genetics services to patients to reduce the clinical demand for genetics providers. Conversational agents have shown promise in managing mental health, pain, and other chronic conditions and are increasingly being used in cancer genetic services. However, research on how patients interact with these agents to satisfy their information needs is limited. Objective: Our primary aim is to assess user interactions with a conversational agent for pretest genetics education. Methods: We conducted a feasibility study of user interactions with a conversational agent who delivers pretest genetics education to primary care patients without cancer who are eligible for cancer genetic evaluation. The conversational agent provided scripted content similar to that delivered in a pretest genetic counseling visit for cancer genetic testing. Outside of a core set of information delivered to all patients, users were able to navigate within the chat to request additional content in their areas of interest. An artificial intelligence–based preprogrammed library was also established to allow users to ask open-ended questions to the conversational agent. Transcripts of the interactions were recorded. Here, we describe the information selected, time spent to complete the chat, and use of the open-ended question feature. Descriptive statistics were used for quantitative measures, and thematic analyses were used for qualitative responses. Results: We invited 103 patients to participate, of which 88.3% (91/103) were offered access to the conversational agent, 39% (36/91) started the chat, and 32% (30/91) completed the chat. Most users who completed the chat indicated that they wanted to continue with genetic testing (21/30, 70%), few were unsure (9/30, 30%), and no patient declined to move forward with testing. Those who decided to test spent an average of 10 (SD 2.57) minutes on the chat, selected an average of 1.87 (SD 1.2) additional pieces of information, and generally did not ask open-ended questions. Those who were unsure spent 4 more minutes on average (mean 14.1, SD 7.41; P=.03) on the chat, selected an average of 3.67 (SD 2.9) additional pieces of information, and asked at least one open-ended question. Conclusions: The pretest chat provided enough information for most patients to decide on cancer genetic testing, as indicated by the small number of open-ended questions. A subset of participants were still unsure about receiving genetic testing and may require additional education or interpersonal support before making a testing decision. Conversational agents have the potential to become a scalable alternative for pretest genetics education, reducing the clinical demand on genetics providers. %M 34792472 %R 10.2196/29447 %U https://www.jmir.org/2021/11/e29447 %U https://doi.org/10.2196/29447 %U http://www.ncbi.nlm.nih.gov/pubmed/34792472 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 4 %P e25783 %T Assessing the Quality of Online Health Information About Breast Cancer from Chinese Language Websites: Quality Assessment Survey %A Sun,Weiwei %A Luo,Aijing %A Bian,Zhiwei %A Zhao,Bin %A Liu,Peng %A Wang,Kai %A Liu,Yuwen %A Xie,Wenzhao %A Wang,Fuzhi %+ School of Health Management, Bengbu Medical College, 2600#, Donghai Rd, Anhui, Bengbu, 233000, China, 86 18855202156, wfz.bbmc@foxmail.com %K online health information %K breast cancer %K Chinese language websites %K quantitative evaluations %D 2021 %7 18.11.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: In China, the internet has become one of the most important ways to obtain information about breast cancer. However, quantitative evaluations of the quality of Chinese health websites and the breast cancer treatment information they publish are lacking. Objective: This study aimed to evaluate the quality of Chinese breast cancer websites and the value, suitability, and accuracy of the breast cancer treatment information they publish. Methods: Chinese breast cancer health websites were searched and manually screened according to their Alexa and Baidu search engine rankings. For each website included in the survey, which was conducted on April 8, 2019, the three most recently published papers on the website that met the inclusion criteria were included for evaluation. Three raters assessed all materials using the LIDA, DISCERN, and Suitability Assessment of Materials (SAM) tools and the Michigan Checklist. Data analysis was completed with the Statistical Package for Social Sciences (SPSS) version 20.0 and Microsoft Excel 2010. Results: This survey included 20 Chinese breast cancer websites and 60 papers on breast cancer treatment. The LIDA tool was used to evaluate the quality of the 20 websites. The LIDA’s scores of the websites (mean=54.85, SD 3.498; total possible score=81) were low. In terms of the layout, color scheme, search facility, browsing facility, integration of nontextual media, submission of comments, declaration of objectives, content production method, and robust method, more than half of the websites scored 0 (never) or 1 (sometimes). For the online breast cancer treatment papers, the scores were generally low. Regarding suitability, 32 (53.33%) papers were evaluated as presenting unsuitable material. Regarding accuracy, the problems were that the papers were largely not original (44/60, 73%) and lacked references (46/60, 77%). Conclusions: The quality of Chinese breast cancer websites is poor. The color schemes, text settings, user comment submission functions, and language designs should be improved. The quality of Chinese online breast cancer treatment information is poor; the information has little value to users, and pictorial information is scarcely used. The online breast cancer treatment information is accurate but lacks originality and references. Website developers, governments, and medical professionals should play a full role in the design of health websites, the regulation of online health information, and the use of online health information. %M 34792471 %R 10.2196/25783 %U https://cancer.jmir.org/2021/4/e25783 %U https://doi.org/10.2196/25783 %U http://www.ncbi.nlm.nih.gov/pubmed/34792471 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 11 %P e23059 %T Fitness Tracker Information and Privacy Management: Empirical Study %A Abdelhamid,Mohamed %+ Department of Information Systems, California State University, Long Beach, 1250 N Bellflower Blvd, Long Beach, CA, 90840, United States, 1 5629852361, mohamed.abdelhamid@csulb.edu %K privacy %K information sharing %K fitness trackers %K wearable devices %D 2021 %7 16.11.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Fitness trackers allow users to collect, manage, track, and monitor fitness-related activities, such as distance walked, calorie intake, sleep quality, and heart rate. Fitness trackers have become increasingly popular in the past decade. One in five Americans use a device or an app to track their fitness-related activities. These devices generate massive and important data that could help physicians make better assessments of their patients’ health if shared with health providers. This ultimately could lead to better health outcomes and perhaps even lower costs for patients. However, sharing personal fitness information with health care providers has drawbacks, mainly related to the risk of privacy loss and information misuse. Objective: This study investigates the influence of granting users granular privacy control on their willingness to share fitness information. Methods: The study used 270 valid responses collected from Mtrurkers through Amazon Mechanical Turk (MTurk). Participants were randomly assigned to one of two groups. The conceptual model was tested using structural equation modeling (SEM). The dependent variable was the intention to share fitness information. The independent variables were perceived risk, perceived benefits, and trust in the system. Results: SEM explained about 60% of the variance in the dependent variable. Three of the four hypotheses were supported. Perceived risk and trust in the system had a significant relationship with the dependent variable, while trust in the system was not significant. Conclusions: The findings show that people are willing to share their fitness information if they have granular privacy control. This study has practical and theoretical implications. It integrates communication privacy management (CPM) theory with the privacy calculus model. %M 34783672 %R 10.2196/23059 %U https://www.jmir.org/2021/11/e23059 %U https://doi.org/10.2196/23059 %U http://www.ncbi.nlm.nih.gov/pubmed/34783672 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 4 %P e18483 %T Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study %A Sinclair,Marlene %A McCullough,Julie E M %A Elliott,David %A Braz,Paula %A Cavero-Carbonell,Clara %A Dornan,Lesley %A Jamry-Dziurla,Anna %A João Santos,Ana %A Latos-Bieleńska,Anna %A Machado,Ausenda %A Páramo-Rodríguez,Lucía %+ Institute of Nursing and Health Research, Ulster University, Shore Road, Newtownabbey, Northern Ireland, BT37 0QB, United Kingdom, 44 02890368118, m.sinclair1@ulster.ac.uk %K Facebook %K YouTube %K Twitter %K social media %K metrics %K e-forum %K congenital anomalies %K coproduction %K COVID-19 %D 2021 %7 15.11.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Limited research evidence exists on the development of web-based platforms for reciprocal communication, coproduction research, and dissemination of information among parents, professionals, and researchers. This paper provides learning and the outcomes of setting up a bespoke web-based platform using social media. Objective: This study aims to explore the establishment of a web-based, multicontextual research communication platform for parents and stakeholders of children with congenital anomalies using social media and to identify associated research and ethical and technical challenges. Methods: The ConnectEpeople e-forum was developed using social media platforms with a stakeholder engagement process. A multilevel approach was implemented for reciprocal engagement between parents of children with congenital anomalies, researchers, health care professionals, and other stakeholders using private and invisible and public Facebook groups, closed Twitter groups, and YouTube. Ethical approval was obtained from Ulster University. Results: Nonprofit organizations (N=128) were invited to engage with an initial response rate of 16.4% (21/128). Of the 105 parents contacted, 32 entered the private and invisible Facebook groups to participate in the coproduction research. Public Facebook page followers rose to 215, a total of 22 posts had an engagement of >10%, and 34 posts had a reach of over 100. Webinars included requested information on childhood milestones and behavior. YouTube coverage included 106 ConnectEpeople videos with 28,708 impressions. Project information was obtained from 35 countries. The highest Facebook activity occurred during the early morning hours. Achievement of these results required dedicated time management, social media expertise, creativity, and sharing knowledge to curate valuable content. Conclusions: Building and maintaining a multilayered online forum for coproduction and information sharing is challenging. Technical considerations include understanding the functionality and versatility of social media metrics. Social media offers valuable, easily accessible, quantitative, and qualitative data that can drive the reciprocal process of forum development. The identification and integration of the needs of the ConnectEpeople e-forum was a key driver in the dissemination of useful, meaningful, and accessible information. The necessary dedicated administration to respond to requests and posts and collate data required significant time and effort. Participant safety, the development of trust, and the maintenance of confidentiality were major ethical considerations. Discussions on social media platforms enabled parents to support each other and their children. Social media platforms are particularly useful in identifying common family needs related to early childhood development. This research approach was challenging but resulted in valuable outputs requiring further application and testing. This may be of particular importance in response to COVID-19 or future pandemics. Incorporating flexible, adaptable social media strategies into research projects is recommended to develop effective platforms for collaborative and impactful research and dissemination. %M 34779778 %R 10.2196/18483 %U https://pediatrics.jmir.org/2021/4/e18483 %U https://doi.org/10.2196/18483 %U http://www.ncbi.nlm.nih.gov/pubmed/34779778 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 11 %P e21462 %T The Online Patient Satisfaction Index for Patients With Low Back Pain: Development, Reliability, and Validation Study %A Afzali,Tamana %A Lauridsen,Henrik Hein %A Thomsen,Janus Laust %A Hartvigsen,Jan %A Jensen,Martin Bach %A Riis,Allan %+ Research Unit for General Practice in Aalborg, Department of Clinical Medicine, Aalborg University, Fyrkildevej 7, Aalborg, 9220, Denmark, 45 20823660, ariis@dcm.aau.dk %K data accuracy %K patient satisfaction %K rehabilitation %K low back pain %K internet-based intervention %K mobile phone %D 2021 %7 15.11.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Low back pain is highly prevalent, and most often, a specific causative factor cannot be identified. Therefore, for most patients, their low back pain is labeled as nonspecific. Patient education and information are recommended for all these patients. The internet is an accessible source of medical information on low back pain. Approximately 50% of patients with low back pain search the internet for health and medical advice. Patient satisfaction with education and information is important in relation to patients’ levels of inclination to use web-based information and their trust in the information they find. Although patients who are satisfied with the information they retrieve use the internet as a supplementary source of information, dissatisfied patients tend to avoid using the internet. Consumers’ loyalty to a product is often applied to evaluate their satisfaction. Consumers have been shown to be good ambassadors for a service when they are willing to recommend the service to a friend or colleague. When consumers are willing to recommend a service to a friend or colleague, they are also likely to be future users of the service. To the best of our knowledge, no multi-item instrument exists to specifically evaluate satisfaction with information delivered on the web for people with low back pain. Objective: This study aims to report on the development, reliability testing, and construct validity testing of the Online Patient Satisfaction Index to measure patients’ satisfaction with web-based information for low back pain. Methods: This is a cross-sectional validation study of the Online Patient Satisfaction Index. The index was developed with experts and assessed for face validity. It was subsequently administered to 150 adults with nonspecific low back pain. Of these, 46% (70/150) were randomly assigned to participate in a reliability test using an intraclass correlation coefficient of agreement. Construct validity was evaluated by hypothesis testing based on a web app (MyBack) and Wikipedia on low back pain. Results: The index includes 8 items. The median score (range 0-24) based on the MyBack website was 20 (IQR 18-22), and the median score for Wikipedia was 12 (IQR 8-15). The entire score range was used. Overall, 53 participants completed a retest, of which 39 (74%) were stable in their satisfaction with the home page and were included in the analysis for reliability. Intraclass correlation coefficient of agreement was estimated to be 0.82 (95% CI 0.68-0.90). Two hypothesized correlations for construct validity were confirmed through an analysis using complete data. Conclusions: The index had good face validity, excellent reliability, and good construct validity and can be used to measure satisfaction with the provision of web-based information regarding nonspecific low back pain among people willing to access the internet to obtain health information. Trial Registration: ClinicalTrials.gov NCT03449004; https://clinicaltrials.gov/ct2/show/NCT03449004 %M 34779785 %R 10.2196/21462 %U https://formative.jmir.org/2021/11/e21462 %U https://doi.org/10.2196/21462 %U http://www.ncbi.nlm.nih.gov/pubmed/34779785 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 11 %P e26450 %T Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review %A Lang,Michael %A Lemieux,Sébastien %A Hébert,Josée %A Sauvageau,Guy %A Zawati,Ma'n H %+ Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine and Health Sciences, McGill University, 740 Avenue Dr. Penfield, Montreal, QC, H3A 0G1, Canada, 1 (514) 398 8155, man.zawati@mcgill.ca %K medical ethics %K web portal %K scoping review %K eHealth %K portal %D 2021 %7 11.11.2021 %9 Review %J J Med Internet Res %G English %X Background: This study aims to identify a novel potential use for web portals in health care and health research: their adoption for the purposes of rapidly sharing health research findings with clinicians, scientists, and patients. In the era of precision medicine and learning health systems, the translation of research findings into targeted therapies depends on the availability of big data and emerging research results. Web portals may work to promote the availability of novel research, working in tandem with traditional scientific publications and conference proceedings. Objective: This study aims to assess the potential use of web portals, which facilitate the sharing of health research findings among researchers, clinicians, patients, and the public. It also summarizes the potential legal, ethical, and policy implications associated with such tools for public use and in the management of patient care for complex diseases. Methods: This study broadly adopts the methods for scoping literature reviews outlined by Arskey and O’Malley in 2005. Raised by the integration of web portals into patient care for complex diseases, we systematically searched 3 databases, PubMed, Scopus, and WestLaw Next, for sources describing web portals for sharing health research findings among clinicians, researchers, and patients and their associated legal, ethical, and policy challenges. Of the 719 candidate source citations, 22 were retained for the review. Results: We found varied and inconsistent treatment of web portals for sharing health research findings among clinicians, researchers, and patients. Although the literature supports the view that portals of this kind are potentially highly promising, they remain novel and are not yet widely adopted. We also found a wide range of discussions on the legal, ethical, and policy issues related to the use of web portals to share research data. Conclusions: We identified 5 important legal and ethical challenges: privacy and confidentiality, patient health literacy, equity, training, and decision-making. We contend that each of these has meaningful implications for the increased integration of web portals into clinical care. %M 34762055 %R 10.2196/26450 %U https://www.jmir.org/2021/11/e26450 %U https://doi.org/10.2196/26450 %U http://www.ncbi.nlm.nih.gov/pubmed/34762055 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 7 %N 4 %P e31846 %T Coproduction, Coeducation, and Patient Involvement: Everyone Included Framework for Medical Education Across Age Groups and Cultures %A Price,Amy %A Damaraju,Aishini %A Kushalnagar,Poorna %A Brunoe,Summer %A Srivastava,Ujwal %A Debidda,Marcella %A Chu,Larry %+ Stanford Anesthesia Informatics and Media (AIM) Lab, Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, 2370 Watson Court, Suite 235, MC 5352, Palo Alto, CA, 94303, United States, 1 650 723 4671, lchu@stanford.edu %K medical education %K coproduction %K public and patient involvement %K education %K patient %K involvement %K age %K demographic %K model %K framework %K culture %K exploratory %K engagement %D 2021 %7 3.11.2021 %9 Viewpoint %J JMIR Med Educ %G English %X Medical education, research, and health care practice continue to grow with minimal coproduction guidance. We suggest the Commons Principle approach to medical education as modeled by Ostrom and Williamson, where we share how adapting these models to multiple settings can enhance empathy, increase psychological safety, and provide robust just-in-time learning tools for practice. We here describe patient and public coproduction in diverse areas within health care using the commons philosophy across populations, cultures, and generations with learning examples across age groups and cultures. We further explore descriptive, mixed methods participatory action in medical and research education. We adopt an “Everyone Included” perspective and sought to identify its use in continuing medical education, citizen science, marginalized groups, publishing, and student internships. Overall, we outline coproduction at the point of need, as we report on strategies that improved engagement. This work demonstrates coproduction with the public across multiple settings and cultures, showing that even with minimal resources and experience, this partnership can improve medical education and care. %M 34730539 %R 10.2196/31846 %U https://mededu.jmir.org/2021/4/e31846 %U https://doi.org/10.2196/31846 %U http://www.ncbi.nlm.nih.gov/pubmed/34730539 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 11 %P e28329 %T Feasibility and Acceptability of a Digital Patient-Reported Outcome Tool in Routine Outpatient Diabetes Care: Mixed Methods Formative Pilot Study %A Skovlund,Soren E %A Troelsen,Lise Havbæk %A Noergaard,Lise Mellergaard %A Pietraszek,Anna %A Jakobsen,Poul Erik %A Ejskjaer,Niels %+ Department of Endocrinology, Aalborg University Hospital, Mølleparkvej 4, Aalborg, 9000, Denmark, 45 40228835, soren@sorenskovlund.com %K patient-reported outcomes %K diabetes %K person-centered care %K person-centered communication %K dialog %K mental health %K self-management %K collaborative care %K value-based health care %K mixed-methods %K mobile phone %K mHealth %D 2021 %7 3.11.2021 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 34730545 %R 10.2196/28329 %U https://formative.jmir.org/2021/11/e28329 %U https://doi.org/10.2196/28329 %U http://www.ncbi.nlm.nih.gov/pubmed/34730545 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 10 %P e30093 %T A Decision Support Tool for Allogeneic Hematopoietic Stem Cell Transplantation for Children With Sickle Cell Disease: Acceptability and Usability Study %A Veludhandi,Anirudh %A Ross,Diana %A Sinha,Cynthia B %A McCracken,Courtney %A Bakshi,Nitya %A Krishnamurti,Lakshmanan %+ School of Medicine, Emory University, 100 Woodruff Circle, Atlanta, GA, 30322, United States, 1 404 727 5671, lkrishn@emory.edu %K decision support tool %K sickle cell disease %K mobile application %K mHealth %K pediatrics %K transplant %K mobile phone %D 2021 %7 28.10.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Individuals living with sickle cell disease (SCD) may benefit from a variety of disease-modifying therapies, including hydroxyurea, voxelotor, crizanlizumab, L-glutamine, and chronic blood transfusions. However, allogeneic hematopoietic stem cell transplantation (HCT) remains the only nonexperimental treatment with curative intent. As HCT outcomes can be influenced by the complex interaction of several risk factors, HCT can be a difficult decision for health care providers to make for their patients with SCD. Objective: The aim of this study is to determine the acceptability and usability of a prototype decision support tool for health care providers in decision-making about HCT for SCD, together with patients and their families. Methods: On the basis of published transplant registry data, we developed the Sickle Options Decision Support Tool for Children, which provides health care providers with personalized transplant survival and risk estimates for their patients to help them make informed decisions regarding their patients’ management of SCD. To evaluate the tool for its acceptability and usability, we conducted beta tests of the tool and surveys with physicians using the Ottawa Decision Support Framework and mobile health app usability questionnaire, respectively. Results: According to the mobile health app usability questionnaire survey findings, the overall usability of the tool was high (mean 6.15, SD 0.79; range 4.2-7). According to the Ottawa Decision Support Framework survey findings, acceptability of the presentation of information on the decision support tool was also high (mean 2.94, SD 0.63; range 2-4), but the acceptability regarding the amount of information was mixed (mean 2.59, SD 0.5; range 2-3). Most participants expressed that they would use the tool in their own patient consults (13/15, 87%) and suggested that the tool would ease the decision-making process regarding HCT (8/9, 89%). The 4 major emergent themes from the qualitative analysis of participant beta tests include user interface, data content, usefulness during a patient consult, and potential for a patient-focused decision aid. Most participants supported the idea of a patient-focused decision aid but recommended that it should include more background on HCT and a simplification of medical terminology. Conclusions: We report the development, acceptability, and usability of a prototype decision support tool app to provide individualized risk and survival estimates to patients interested in HCT in a patient consultation setting. We propose to finalize the tool by validating predictive analytics using a large data set of patients with SCD who have undergone HCT. Such a tool may be useful in promoting physician-patient collaboration in making shared decisions regarding HCT for SCD. Further incorporation of patient-specific measures, including the HCT comorbidity index and the quality of life after transplant, may improve the applicability of the decision support tool in a health care setting. %M 34709190 %R 10.2196/30093 %U https://formative.jmir.org/2021/10/e30093 %U https://doi.org/10.2196/30093 %U http://www.ncbi.nlm.nih.gov/pubmed/34709190 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 10 %P e32134 %T Effects of Telerehabilitation on Patient Adherence to a Rehabilitation Plan: Protocol for a Mixed Methods Trial %A Gaboury,Isabelle %A Tousignant,Michel %A Corriveau,Hélène %A Menear,Matthew %A Le Dorze,Guylaine %A Rochefort,Christian %A Vachon,Brigitte %A Rochette,Annie %A Gosselin,Sylvie %A Michaud,François %A Bollen,Jessica %A Dean,Sarah %+ Department of Family Medicine and Emergency Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 150 place Charles-Le Moyne, Longueuil, QC, J4K 0A8, Canada, 1 4504665000, isabelle.gaboury@usherbrooke.ca %K adherence %K interprofessional shared decision making %K rehabilitation %K stroke %K telerehabilitation %D 2021 %7 28.10.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Strong evidence supports beginning stroke rehabilitation as soon as the patient’s medical status has stabilized and continuing following discharge from acute care. However, adherence to rehabilitation treatments over the rehabilitation phase has been shown to be suboptimal. Objective: The aim of this study is to assess the impact of a telerehabilitation platform on stroke patients’ adherence to a rehabilitation plan and on their level of reintegration into normal social activities, in comparison with usual care. The primary outcome is patient adherence to stroke rehabilitation (up to 12 weeks), which is hypothesized to influence reintegration into normal living. Secondary outcomes for patients include functional recovery and independence, depression, adverse events related to telerehabilitation, use of services (up to 6 months), perception of interprofessional shared decision making, and quality of services received. Interprofessional collaboration as well as quality of interprofessional shared decision making will be measured with clinicians. Methods: In this interrupted time series with a convergent qualitative component, rehabilitation teams will be trained to develop rehabilitation treatment plans that engage the patient and family, while taking advantage of a telerehabilitation platform to deliver the treatment. The intervention will be comprised of 220 patients who will take part in stroke telerehabilitation with an interdisciplinary group of clinicians (telerehabilitation group) versus face-to-face standard of care (control group: n=110 patients). Results: Our Research Ethics Board approved the study in June 2020. Data collection for the control group is underway, with another year planned before we begin the intervention phase. Conclusions: This study will contribute to the minimization of both knowledge and practice gaps, while producing robust, in-depth data on the factors related to the effectiveness of telerehabilitation in a stroke rehabilitation continuum. Findings will inform best practice guidelines regarding telecare services and the provision of telerehabilitation, including recommendations for effective interdisciplinary collaboration regarding stroke rehabilitation. Trial Registration: ClinicalTrials.gov NCT04440215; https://clinicaltrials.gov/ct2/show/NCT04440215 International Registered Report Identifier (IRRID): DERR1-10.2196/32134 %M 34709196 %R 10.2196/32134 %U https://www.researchprotocols.org/2021/10/e32134 %U https://doi.org/10.2196/32134 %U http://www.ncbi.nlm.nih.gov/pubmed/34709196 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 7 %N 10 %P e26177 %T Readiness for Use of HIV Preexposure Prophylaxis Among Men Who Have Sex With Men in Malawi: Qualitative Focus Group and Interview Study %A Mpunga,Elizabeth %A Persaud,Navindra %A Akolo,Christopher %A Boyee,Dorica %A Kamanga,Gift %A Trapence,Gift %A Chilongozi,David %A Ruberintwari,Melchiade %A Masankha Banda,Louis %+ FHI360, Arwa building, 3rd Floor, Box 30382, Lilongwe, Malawi, 265 1755991, empunga@fhi360.org %K MSM %K readiness to use %K PrEP %K HIV prevention %K qualitative assessment %K HIV %K men who have sex with men %K Malawi %K prophylaxis %D 2021 %7 27.10.2021 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Men who have sex with men (MSM) are a key group for HIV interventions in Malawi considering their high HIV prevalence (17.5% compared to 8.4% among men in the general population). The use of oral preexposure prophylaxis (PrEP) presents a new opportunity for MSM to be protected. We present the findings from a qualitative assessment designed to assess awareness of and willingness and barriers to using PrEP among MSM in Malawi. Objective: The 3 main objectives of this assessment were to determine: (1) awareness of PrEP, (2) factors that influence willingness to use PrEP, and (3) potential barriers to PrEP use and adherence among MSM in order to guide the design and implementation of a PrEP program in Malawi. Methods: Ahead of the introduction of PrEP in Malawi, a qualitative study using in-depth interviews (IDIs) and focus group discussions (FGDs) was conducted in October 2018 in Blantyre, Lilongwe, and rural districts of Mzimba North and Mangochi. With support of members of the population, study participants were purposively recruited from 4 MSM-friendly drop-in centers where MSM receive a range of health services to ensure representativeness across sites and age. Participants were asked what they had heard about PrEP, their willingness to use PrEP, their barriers to PrEP use, and their preferences for service delivery. The data were analyzed using a thematic content analysis framework that was predetermined in line with objectives. Results: A total of 109 MSM were interviewed—13 through IDIs and 96 through FGDs. Most participants were aware of PrEP as a new HIV intervention but had limited knowledge related to its use. However, the majority were willing to use it and were looking forward to having access to it. IDI participants indicated that they will be more willing to take PrEP if the dosing frequency were appropriate and MSM were involved in information giving and distribution of the drug. FGD participants emphasized that places of distribution and characteristics of the service provider are the key factors that will affect use. Knowing the benefits of PrEP emerged as a key theme in both the IDIs and FGDs. Participants highlighted barriers that would hinder them from taking PrEP such as side effects which were cited in IDIs and FGDs. Key factors from FGDs include cost, fear of being outed, drug stockouts, fear of being known as MSMs by wives, and lack of relevant information. FGDs cited stigma from health care workers, forgetfulness, and community associated factors. Conclusions: Despite having inadequate knowledge about PrEP, study participants were largely willing to use PrEP if available. Programs should include an effective information, education, and communication component around their preferences and provide PrEP in MSM-friendly sites. %M 34228627 %R 10.2196/26177 %U https://publichealth.jmir.org/2021/10/e26177 %U https://doi.org/10.2196/26177 %U http://www.ncbi.nlm.nih.gov/pubmed/34228627 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 8 %N 4 %P e28618 %T A Shared Decision-making Tool for Drug Interactions Between Warfarin and Nonsteroidal Anti-inflammatory Drugs: Design and Usability Study %A Reese,Thomas J %A Del Fiol,Guilherme %A Morgan,Keaton %A Hurwitz,Jason T %A Kawamoto,Kensaku %A Gomez-Lumbreras,Ainhoa %A Brown,Mary L %A Thiess,Henrik %A Vazquez,Sara R %A Nelson,Scott D %A Boyce,Richard %A Malone,Daniel %+ Vanderbilt University, 2525 West End Avenue, Suite 1475, Nashville, TN, 37203, United States, 1 (615) 936 6867, Thomas.Reese@vumc.org %K shared decision-making %K user-centered design %K drug interaction %K clinical decision support %D 2021 %7 26.10.2021 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Exposure to life-threatening drug-drug interactions (DDIs) occurs despite the widespread use of clinical decision support. The DDI between warfarin and nonsteroidal anti-inflammatory drugs is common and potentially life-threatening. Patients can play a substantial role in preventing harm from DDIs; however, the current model for DDI decision-making is clinician centric. Objective: This study aims to design and study the usability of DDInteract, a tool to support shared decision-making (SDM) between a patient and provider for the DDI between warfarin and nonsteroidal anti-inflammatory drugs. Methods: We used an SDM framework and user-centered design methods to guide the design and usability of DDInteract—an SDM electronic health record app to prevent harm from clinically significant DDIs. The design involved iterative prototypes, qualitative feedback from stakeholders, and a heuristic evaluation. The usability evaluation included patients and clinicians. Patients participated in a simulated SDM discussion using clinical vignettes. Clinicians were asked to complete eight tasks using DDInteract and to assess the tool using a survey adapted from the System Usability Scale. Results: The designed DDInteract prototype includes the following features: a patient-specific risk profile, dynamic risk icon array, patient education section, and treatment decision tree. A total of 4 patients and 11 clinicians participated in the usability study. After an SDM session where patients and clinicians review the tool concurrently, patients generally favored pain treatments with less risk of gastrointestinal bleeding. Clinicians successfully completed the tasks with a mean of 144 (SD 74) seconds and rated the usability of DDInteract as 4.32 (SD 0.52) of 5. Conclusions: This study expands the use of SDM to DDIs. The next steps are to determine if DDInteract can improve shared decision-making quality and to implement it across health systems using interoperable technology. %M 34698649 %R 10.2196/28618 %U https://humanfactors.jmir.org/2021/4/e28618 %U https://doi.org/10.2196/28618 %U http://www.ncbi.nlm.nih.gov/pubmed/34698649 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 8 %N 4 %P e27628 %T User Interactions With Health Insurance Decision Aids: User Study With Retrospective Think-Aloud Interviews %A Giang,Wayne C W %A Bland,Emma %A Chen,Jeffrey %A Colón-Morales,Coralys M %A Alvarado,Michelle M %+ Department of Industrial and Systems Engineering, University of Florida, 303 Weil Hall, P.O. Box 116595, Gainesville, FL, 32611-6595, United States, 1 352 294 7729, wayne.giang@ise.ufl.edu %K insurance, health %K health benefits plans %K employee %K decision aids %K cognitive ergonomics %K human factors engineering %D 2021 %7 26.10.2021 %9 Original Paper %J JMIR Hum Factors %G English %X 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. %M 34698647 %R 10.2196/27628 %U https://humanfactors.jmir.org/2021/4/e27628 %U https://doi.org/10.2196/27628 %U http://www.ncbi.nlm.nih.gov/pubmed/34698647 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 4 %P e31616 %T Computer-Based Decision Tools for Shared Therapeutic Decision-making in Oncology: Systematic Review %A Yung,Alan %A Kay,Judy %A Beale,Philip %A Gibson,Kathryn A %A Shaw,Tim %+ Research in Implementation Science and eHealth, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW 2006, Australia, 61 433697881, ayun4081@uni.sydney.edu.au %K oncology %K cancer %K computer-based %K decision support %K decision-making %K system %K tool %K machine learning %K artificial intelligence %K uncertainty %K shared decision-making %D 2021 %7 26.10.2021 %9 Review %J JMIR Cancer %G English %X 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 %M 34544680 %R 10.2196/31616 %U https://cancer.jmir.org/2021/4/e31616 %U https://doi.org/10.2196/31616 %U http://www.ncbi.nlm.nih.gov/pubmed/34544680 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e19915 %T Comparative Effectiveness of Enhanced Patient Instructions for Bowel Preparation Before Colonoscopy: Network Meta-analysis of 23 Randomized Controlled Trials %A Tian,Xu %A Yi,Li-Juan %A Han,Yang %A Chen,Hui %A Liu,Xiao-Ling %A Chen,Wei-Qing %A Jiménez-Herrera,Maria F %+ Nursing Department, Universitat Rovira i Virgili, Avinguda Catalunya, 35, Tarragona, 43002, Spain, 34 977299426, maria.jimenez@urv.cat %K colonoscopy %K bowel preparation %K patient instruction %K systematic review %K network meta-analysis %D 2021 %7 25.10.2021 %9 Review %J J Med Internet Res %G English %X Background: Various enhanced patient instructions (EPIs) have been used for bowel preparation (BP) and our previous meta-analysis also demonstrated the efficacy of EPIs in increasing the colonic polyp and adenoma detection rates; however, the optimal method for adequate BP has not yet been developed. Objective: We performed a network meta-analysis to determine the optimal instructions. Methods: We searched for randomized controlled trials (RCTs) comparing the effectiveness of EPIs with each other or standard patient instructions (SPIs) for BP. We performed direct and Bayesian network meta-analyses for all instructions and used the GRADE (Grading of Recommendations Assessment, Development and Evaluation) criteria to appraise the quality of evidence. Results: We included 23 RCTs (7969 patients) comparing 10 different instructions. In direct meta-analyses, most of the EPIs, except visual aids and mobile apps, increased the adequate preparation rate (APR). Network meta-analyses showed that additional explanations were superior to visual aids (odds ratio [OR] 0.35, 95% CI 0.19-0.59), telephone calls (OR 0.62, 95% CI 0.37-0.99), educational videos (OR 0.79, 95% CI 0.5-0.77), and mobile apps (OR 0.33, 95% CI 0.14-0.68) with low-to-high-quality evidence; newly designed booklets (OR 3.28, 95% CI 1.59-6.16), SMS text messaging (OR 2.33, 95% CI 1.28-3.91), telephone calls (OR 1.86, 95% CI 1.03-1.78), educational videos (OR 2.33, 95% CI 1.40-3.65), and social media applications (OR 2.42, 95% CI 1.4-3.93) were superior to visual aids and mobile apps with low-to-high-quality evidence. SMS text messaging, telephone calls, and social media applications increase adherence to and satisfaction with the BP regime. Social media applications reduce the risk of adverse events (AEs). Telephone calls and social media applications increase the polyp detection rate (PDR). Conclusions: Newly designed booklets, telephone calls, educational videos, and social media applications can improve the quality of BP. Telephone calls and social media applications improve adherence to and satisfaction with the BP regime, reduce the risk of AEs, and increase the PDR. Trial Registration: INPLASY (International Platform of Registered Systematic Review and Meta-analysis Protocols) INPLASY2020120103; https://inplasy.com/inplasy-2020-12-0103/ %M 34694227 %R 10.2196/19915 %U https://www.jmir.org/2021/10/e19915 %U https://doi.org/10.2196/19915 %U http://www.ncbi.nlm.nih.gov/pubmed/34694227 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 4 %P e30681 %T Videos With the Hashtag #vaping on TikTok and Implications for Informed Decision-making by Adolescents: Descriptive Study %A Basch,Corey H %A Fera,Joseph %A Pellicane,Alessia %A Basch,Charles E %+ William Paterson University, 300 Pompton Rd, Wayne, NJ, 07470, United States, 1 973 720 2603, baschc@wpunj.edu %K vaping %K TikTok %K social media %K misinformation %K decision-making %K adolescents %K young adults %K e-cigarettes %K public health %K informed decision-making %D 2021 %7 25.10.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Despite the public health importance of vaping and the widespread use of TikTok by adolescents and young adults, research is lacking on the nature and scope of vaping content on this networking service. Objective: The purpose of this study is to describe the content of TikTok videos related to vaping. Methods: By searching the hashtag #vaping in the discover feature, ~478.4 million views were seen during the time of data collection. The first 100 relevant videos under that hashtag were used in this study. Relevance was determined by simply noting if the video was related in any way to vaping. Coding consisted of several categories directly related to vaping and additional categories, including the number of likes, comments, and views, and if the video involved music, humor, or dance. Results: The 100 videos included in the sample garnered 156,331,347 views; 20,335,800 likes; and 296,460 comments. The majority of the videos (n=59) used music and over one-third (n=37) used humor. The only content category observed in the majority of the videos sampled was the promotion of vaping, which was included in 57 videos that garnered over 74 million views (47.5% of cumulative views). A total of 42% (n=42) of the 100 videos sampled featured someone vaping or in the presence of vape pens, and these videos garnered over 22% (>35 million) of the total views. Conclusions: It is necessary for public health agencies to improve understanding of the nature and content of videos that attract viewers’ attention and harness the strength of this communication channel to promote informed decision-making about vaping. %M 34694231 %R 10.2196/30681 %U https://pediatrics.jmir.org/2021/4/e30681 %U https://doi.org/10.2196/30681 %U http://www.ncbi.nlm.nih.gov/pubmed/34694231 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 10 %P e32921 %T Assessing a Smartphone App (AICaries) That Uses Artificial Intelligence to Detect Dental Caries in Children and Provides Interactive Oral Health Education: Protocol for a Design and Usability Testing Study %A Xiao,Jin %A Luo,Jiebo %A Ly-Mapes,Oriana %A Wu,Tong Tong %A Dye,Timothy %A Al Jallad,Nisreen %A Hao,Peirong %A Ruan,Jinlong %A Bullock,Sherita %A Fiscella,Kevin %+ Department of Family Medicine, University of Rochester Medical Center, 1381 South Avenue, Rochester, NY, 14620, United States, 1 585 506 9484, Kevin_Fiscella@URMC.Rochester.edu %K artificial intelligence %K smartphone app %K mDentistry %K dental caries %K underserved population %K mobile dentistry %D 2021 %7 22.10.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Early childhood caries (ECC) is the most common chronic childhood disease, with nearly 1.8 billion new cases per year worldwide. ECC afflicts approximately 55% of low-income and minority US preschool children, resulting in harmful short- and long-term effects on health and quality of life. Clinical evidence shows that caries is reversible if detected and addressed in its early stages. However, many low-income US children often have poor access to pediatric dental services. In this underserved group, dental caries is often diagnosed at a late stage when extensive restorative treatment is needed. With more than 85% of lower-income Americans owning a smartphone, mobile health tools such as smartphone apps hold promise in achieving patient-driven early detection and risk control of ECC. Objective: This study aims to use a community-based participatory research strategy to refine and test the usability of an artificial intelligence–powered smartphone app, AICaries, to be used by children’s parents/caregivers for dental caries detection in their children. Methods: Our previous work has led to the prototype of AICaries, which offers artificial intelligence–powered caries detection using photos of children’s teeth taken by the parents’ smartphones, interactive caries risk assessment, and personalized education on reducing children’s ECC risk. This AICaries study will use a two-step qualitative study design to assess the feedback and usability of the app component and app flow, and whether parents can take photos of children’s teeth on their own. Specifically, in step 1, we will conduct individual usability tests among 10 pairs of end users (parents with young children) to facilitate app module modification and fine-tuning using think aloud and instant data analysis strategies. In step 2, we will conduct unmoderated field testing for app feasibility and acceptability among 32 pairs of parents with their young children to assess the usability and acceptability of AICaries, including assessing the number/quality of teeth images taken by the parents for their children and parents’ satisfaction. Results: The study is funded by the National Institute of Dental and Craniofacial Research, United States. This study received institutional review board approval and launched in August 2021. Data collection and analysis are expected to conclude by March 2022 and June 2022, respectively. Conclusions: Using AICaries, parents can use their regular smartphones to take photos of their children’s teeth and detect ECC aided by AICaries so that they can actively seek treatment for their children at an early and reversible stage of ECC. Using AICaries, parents can also obtain essential knowledge on reducing their children’s caries risk. Data from this study will support a future clinical trial that evaluates the real-world impact of using this smartphone app on early detection and prevention of ECC among low-income children. International Registered Report Identifier (IRRID): PRR1-10.2196/32921 %M 34529582 %R 10.2196/32921 %U https://www.researchprotocols.org/2021/10/e32921 %U https://doi.org/10.2196/32921 %U http://www.ncbi.nlm.nih.gov/pubmed/34529582 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e25497 %T Harnessing Machine Learning to Personalize Web-Based Health Care Content %A Guni,Ahmad %A Normahani,Pasha %A Davies,Alun %A Jaffer,Usman %+ Department of Surgery and Cancer, Imperial College London, Exhibition Road, London, SW7 2AZ, United Kingdom, 44 7803434969, ahmad.guni@nhs.net %K internet %K online health information %K personalized content %K patient education %K machine learning %D 2021 %7 19.10.2021 %9 Viewpoint %J J Med Internet Res %G English %X Web-based health care content has emerged as a primary source for patients to access health information without direct guidance from health care providers. The benefit of this approach is dependent on the ability of patients to access engaging high-quality information, but significant variability in the quality of web-based information often forces patients to navigate large quantities of inaccurate, incomplete, irrelevant, or inaccessible content. Personalization positions the patient at the center of health care models by considering their needs, preferences, goals, and values. However, the traditional methods used thus far in health care to determine the factors of high-quality content for a particular user are insufficient. Machine learning (ML) uses algorithms to process and uncover patterns within large volumes of data to develop predictive models that automatically improve over time. The health care sector has lagged behind other industries in implementing ML to analyze user and content features, which can automate personalized content recommendations on a mass scale. With the advent of big data in health care, which builds comprehensive patient profiles drawn from several disparate sources, ML can be used to integrate structured and unstructured data from users and content to deliver content that is predicted to be effective and engaging for patients. This enables patients to engage in their health and support education, self-management, and positive behavior change as well as to enhance clinical outcomes. %M 34665146 %R 10.2196/25497 %U https://www.jmir.org/2021/10/e25497 %U https://doi.org/10.2196/25497 %U http://www.ncbi.nlm.nih.gov/pubmed/34665146 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 4 %P e30695 %T The Content and Quality of Publicly Available Information About Congenital Diaphragmatic Hernia: Descriptive Study %A Soltys,Frank Coyle %A Spilo,Kimi %A Politi,Mary C %+ Division of Newborn Medicine, Department of Pediatrics, Washington University School of Medicine, Washington University in St. Louis, 660 S. Euclid Avenue, CB 8116, St. Louis, MO, 63110, United States, 1 3176750010, fsoltys@wustl.edu %K congenital diaphragmatic hernia %K prenatal counseling %K fetal care %K online information %K parental decision making %D 2021 %7 19.10.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Congenital diaphragmatic hernia (CDH) diagnosis in an infant is distressing for parents. Parents often feel unable to absorb the complexities of CDH during prenatal consultations and use the internet to supplement their knowledge and decision making. Objective: We aimed to examine the content and quality of publicly available, internet-based CDH information. Methods: We conducted internet searches across 2 popular search engines (Google and Bing). Websites were included if they contained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders (FS and KS) were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics were performed. Results: Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDH information including describing the defect (86/91, 95%), need for neonatal intensive care (77/91, 85%), and surgical correction (79/91, 87%). Few mentioned palliative care, decisions about pregnancy termination (13/91, 14%), or support resources (21/91, 23%). Conclusions: Findings highlight the variability of information about CDH on the internet. Clinicians should work to develop or identify reliable, comprehensive information about CDH to support parents. %M 34665147 %R 10.2196/30695 %U https://pediatrics.jmir.org/2021/4/e30695 %U https://doi.org/10.2196/30695 %U http://www.ncbi.nlm.nih.gov/pubmed/34665147 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e26732 %T Clinician-Created Educational Video Resources for Shared Decision-making in the Outpatient Management of Chronic Disease: Development and Evaluation Study %A Kovoor,Joshua G %A McIntyre,Daniel %A Chik,William W B %A Chow,Clara K %A Thiagalingam,Aravinda %+ Department of Cardiology, Westmead Hospital, Cnr Darcy and Hawkesbury Rds, Sydney, 2145, Australia, 61 298456795, aravinda.thiagalingam@sydney.edu.au %K Shared decision-making %K chronic disease %K outpatients %K audiovisual aids %K atrial fibrillation %K educational technology %K teaching materials %K referral and consultation %K physician-patient relations %K physicians %D 2021 %7 11.10.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The provision of reliable patient education is essential for shared decision-making. However, many clinicians are reluctant to use commonly available resources, as they are generic and may contain information of insufficient quality. Clinician-created educational materials, accessed during the waiting time prior to consultation, can potentially benefit clinical practice if developed in a time- and resource-efficient manner. Objective: The aim of this study is to evaluate the utility of educational videos in improving patient decision-making, as well as consultation satisfaction and anxiety, within the outpatient management of chronic disease (represented by atrial fibrillation). The approach involves clinicians creating audiovisual patient education in a time- and resource-efficient manner for opportunistic delivery, using mobile smart devices with internet access, during waiting time before consultation. Methods: We implemented this educational approach in outpatient clinics and collected patient responses through an electronic survey. The educational module was a web-based combination of 4 short videos viewed sequentially, followed by a patient experience survey using 5-point Likert scales and 0-100 visual analogue scales. The clinician developed the audiovisual module over a 2-day span while performing usual clinical tasks, using existing hardware and software resources (laptop and tablet). Patients presenting for the outpatient management of atrial fibrillation accessed the module during waiting time before their consultation using either a URL or Quick Response (QR) code on a provided tablet or their own mobile smart devices. The primary outcome of the study was the module’s utility in improving patient decision-making ability, as measured on a 0-100 visual analogue scale. Secondary outcomes were the level of patient satisfaction with the videos, measured with 5-point Likert scales, in addition to the patient’s value for clinician narration and the module’s utility in improving anxiety and long-term treatment adherence, as represented on 0-100 visual analogue scales. Results: This study enrolled 116 patients presenting for the outpatient management of atrial fibrillation. The proportion of responses that were “very satisfied” with the educational video content across the 4 videos ranged from 93% (86/92) to 96.3% (104/108) and this was between 98% (90/92) and 99.1% (107/108) for “satisfied” or “very satisfied.” There were no reports of dissatisfaction for the first 3 videos, and only 1% (1/92) of responders reported dissatisfaction for the fourth video. The median reported scores (on 0-100 visual analogue scales) were 90 (IQR 82.5-97) for improving patient decision-making, 89 (IQR 81-95) for reducing consultation anxiety, 90 (IQR 81-97) for improving treatment adherence, and 82 (IQR 70-90) for the clinician’s narration adding benefit to the patient experience. Conclusions: Clinician-created educational videos for chronic disease management resulted in improvements in patient-reported informed decision-making ability and expected long-term treatment adherence, as well as anxiety reduction. This form of patient education was also time efficient as it used the sunk time cost of waiting time to provide education without requiring additional clinician input. %M 34633292 %R 10.2196/26732 %U https://www.jmir.org/2021/10/e26732 %U https://doi.org/10.2196/26732 %U http://www.ncbi.nlm.nih.gov/pubmed/34633292 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e29558 %T Multiple Sclerosis Progression Discussion Tool Usability and Usefulness in Clinical Practice: Cross-sectional, Web-Based Survey %A Ziemssen,Tjalf %A Giovannoni,Gavin %A Alvarez,Enrique %A Bhan,Virender %A Hersh,Carrie %A Hoffmann,Olaf %A Oreja-Guevara,Celia %A Robles-Cedeño,Rene R %A Trojano,Maria %A Vermersch,Patrick %A Dobay,Pamela %A Khwaja,Mudeer %A Stadler,Bianca %A Rauser,Benedict %A Hach,Thomas %A Piani-Meier,Daniela %A Burton,Jason %+ Center of Clinical Neuroscience, Neurological University Clinic Carl-Gustav Carus, Dresden University of Technology, Helmholtzstr. 10, Dresden, 01069, Germany, 49 3514584465, Ziemssen@web.de %K multiple sclerosis %K relapsing remitting multiple sclerosis %K secondary progressive multiple sclerosis %K transition %K progression %K digital %K usability %D 2021 %7 6.10.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: A digital tool, Multiple Sclerosis Progression Discussion Tool (MSProDiscuss), was developed to facilitate discussions between health care professionals (HCPs) and patients in evaluating early, subtle signs of multiple sclerosis (MS) disease progression. Objective: The aim of this study is to report the findings on the usability and usefulness of MSProDiscuss in a real-world clinical setting. Methods: In this cross-sectional, web-based survey, HCPs across 34 countries completed an initial individual questionnaire (comprising 7 questions on comprehensibility, usability, and usefulness after using MSProDiscuss during each patient consultation) and a final questionnaire (comprising 13 questions on comprehensibility, usability, usefulness, and integration and adoption into clinical practice to capture the HCPs’ overall experience of using the tool). The responses were provided on a 5-point Likert scale. All analyses were descriptive, and no statistical comparisons were made. Results: In total, 301 HCPs tested the tool in 6974 people with MS, of whom 77% (5370/6974) had relapsing-remitting MS, including those suspected to be transitioning to secondary progressive MS. The time taken to complete MSProDiscuss was reported to be in the range of 1 to 4 minutes in 97.3% (6786/6974; initial) to 98.2% (269/274; final) of the cases. In 93.54% (6524/6974; initial) to 97.1% (266/274; final) of the cases, the HCPs agreed (4 or 5 on the Likert scale) that patients were able to comprehend the questions in the tool. The HCPs were willing to use the tool again in the same patient, 90.47% (6310/6974; initial) of the cases. The HCPs reported MSProDiscuss to be useful in discussing MS symptoms and their impact on daily activities (6121/6974, 87.76% initial and 252/274, 92% final) and cognitive function (5482/6974, 78.61% initial and 271/274, 79.2% final), as well as in discussing progression in general (6102/6974, 87.49% initial and 246/274, 89.8% final). While completing the final questionnaire, 94.9% (260/274) of the HCPs agreed that the questions were similar to those asked in regular consultation, and the tool helped to better understand the impact of MS symptoms on daily activities (249/274, 90.9%) and cognitive function (220/274, 80.3%). Overall, 92% (252/274) of the HCPs reported that they would recommend MSProDiscuss to a colleague, and 85.8% (235/274) were willing to integrate it into their clinical practice. Conclusions: MSProDiscuss is a usable and useful tool to facilitate a physician-patient discussion on MS disease progression in daily clinical practice. Most of the HCPs agreed that the tool is easy to use and were willing to integrate MSProDiscuss into their daily clinical practice. %M 34612826 %R 10.2196/29558 %U https://www.jmir.org/2021/10/e29558 %U https://doi.org/10.2196/29558 %U http://www.ncbi.nlm.nih.gov/pubmed/34612826 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e30701 %T Improvement and Evaluation of the TOPCOP Taxonomy of Patient Portals: Taxonomy-Evaluation-Delphi (TED) Approach %A Glöggler,Michael %A Ammenwerth,Elske %+ Institute of Medical Informatics, UMIT – Private University for Health Sciences, Medical Informatics and Technology, Eduard-Wallnöfer-Zentrum 1, Hall in Tirol, 6060, Austria, 43 50 8648 ext 3809, michael.gloeggler@edu.umit-tirol.at %K taxonomy %K classification system %K patient portal %K EHR portal %K online EHR access %K evaluation %K Delphi study %K electronic health records %K digital health %K health information %K information management %K user perspectives %D 2021 %7 5.10.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Patient portals have been introduced in many countries over the last 10 years, but many health information managers still feel they have too little knowledge of patient portals. A taxonomy can help them to better compare and select portals. This has led us to develop the TOPCOP taxonomy for classifying and comparing patient portals. However, the taxonomy has not been evaluated by users. Objective: This study aimed to evaluate the taxonomy’s usefulness to support health information managers in comparing, classifying, defining a requirement profile for, and selecting patient portals and to improve the taxonomy where needed. Methods: We used a modified Delphi approach. We sampled a heterogeneous panel of 13 health information managers from 3 countries using the criterion sampling strategy. We conducted 4 anonymous survey rounds with qualitative and quantitative questions. In round 1, the panelists assessed the appropriateness of each dimension, and we collected new ideas to improve the dimensions. In rounds 2 and 3, the panelists iteratively evaluated the taxonomy that was revised based on round 1. In round 4, the panelists assessed the need for a taxonomy and the appropriateness of patient engagement as a distinguishing concept. Then, they compared 2 real portals with the final taxonomy and evaluated its usefulness for comparing portals, creating an initial requirement profile, and selecting patient portals. To determine group consensus, we applied the RAND/UCLA Appropriateness Method. Results: The final taxonomy consists of 25 dimensions with 65 characteristics. Five new dimensions were added to the original taxonomy, with 8 characteristics added to already existing dimensions. Group consensus was achieved on the need for such a taxonomy to compare portals, on patient engagement as an appropriate distinguishing concept, and on the comprehensibility of the taxonomy’s form. Further, consensus was achieved on the taxonomy’s usefulness for classifying and comparing portals, assisting users in better understanding portals, creating a requirement profile, and selecting portals. This allowed us to test the usefulness of the final taxonomy with the intended users. Conclusions: The TOPCOP taxonomy aims to support health information managers in comparing and selecting patient portals. By providing a standardized terminology to describe various aspects of patient portals independent of clinical setting or country, the taxonomy will also be useful for advancing research and evaluation of patient portals. %M 34403354 %R 10.2196/30701 %U https://www.jmir.org/2021/10/e30701 %U https://doi.org/10.2196/30701 %U http://www.ncbi.nlm.nih.gov/pubmed/34403354 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 10 %P e31722 %T Practical and Emotional Problems Reported by Users of a Self-guided Digital Problem-solving Intervention During the COVID-19 Pandemic: Content Analysis %A Hentati,Amira %A Forsell,Erik %A Ljótsson,Brjánn %A Kraepelien,Martin %+ Centre for Psychiatry Research, Department of Clinical Neuroscience, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, Norra Stationsgatan 69, Stockholm, 11364, Sweden, 46 704411425, amira.hentati@ki.se %K digital intervention %K COVID-19 %K problem-solving %K self-guided intervention %K content analysis %K public health %K mental health %K depression %K anxiety %K pandemic %D 2021 %7 4.10.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: To better direct assessments and interventions toward the general population during both the ongoing COVID-19 pandemic and future crises with societal restrictions, data on the types of practical and emotional problems that people are experiencing are needed. Objective: The aim of this study was to examine the types of practical and emotional problems that the general population is experiencing during the COVID-19 pandemic and to construct an empirically derived inventory based on the findings. Methods: A total of 396 participants, recruited among members of the general public in Sweden who were experiencing practical and/or emotional problems during the pandemic, accessed a self-guided digital problem-solving intervention for a period of 1 week to report and solve the problems they experienced. Prior to accessing the intervention, the participants completed a short self-assessment regarding symptoms of depression and anxiety. Content analysis was used to account for the types of problems participants reported. A set of items for an inventory was later proposed based on the problem categories derived from the analysis. Results: A majority of participants had clinically relevant symptoms of either depression or anxiety. The problems reported were categorized as 13 distinct types of problems. The most common problem was difficulty managing daily activities. Based on the categories, a 13-item inventory was proposed. Conclusions: The 13 types of problems, and the proposed inventory, could be valuable when composing assessments and interventions for the general population during the ongoing pandemic or similar crises with societal restrictions. The most common problem was of a practical nature, indicating the importance of including examples of such problems within assessments and interventions. Trial Registration: ClinicalTrials.gov NCT04677270; https://clinicaltrials.gov/ct2/show/NCT04677270 %M 34559670 %R 10.2196/31722 %U https://formative.jmir.org/2021/10/e31722 %U https://doi.org/10.2196/31722 %U http://www.ncbi.nlm.nih.gov/pubmed/34559670 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e28355 %T Effect of a Brief Web-Based Educational Intervention on Willingness to Consider Human Papillomavirus Vaccination for Children in Japan: Randomized Controlled Trial %A Suzuki,Yukio %A Sukegawa,Akiko %A Ueda,Yutaka %A Sekine,Masayuki %A Enomoto,Takayuki %A Miyagi,Etsuko %+ Department of Obstetrics and Gynecology, Graduate School of Medicine, Yokohama City University, 3-9 Fukuura, Kanazawa-ku, Yokohama, 236-0004, Japan, 81 45 787 2800, yetii@yokohama-cu.ac.jp %K human papillomavirus %K human papillomavirus vaccination %K behavioral insights %K behavioral change %K web-based randomized controlled trial %D 2021 %7 27.9.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The human papillomavirus (HPV) vaccination rate in Japan has fallen to nearly zero since the suspension of governmental proactive recommendations in 2013, owing to the development of purported adverse events. Objective: This study aimed to evaluate the effects of a brief web-based educational intervention using the theory of behavioral insights on the willingness of adults to consider the HPV vaccine for their daughters and sons. Methods: We recruited 1660 participants aged 20 years or older in March 2018 via a webpage and provided them with a 10-item questionnaire related to the following aspects: awareness regarding HPV infection and vaccination, willingness for immunization, and actions for prevention. We randomly stratified participants based on sex and age with or without a brief educational intervention involving scientific information presented in an easy-to-read format. Results: Only 484 (29.2%) of the respondents were aware of the benefits of HPV vaccination. Although only 352 (21.2%) of the respondents displayed a willingness for immunization of their daughters, there were 40 (4.8%) more respondents in the intervention group with this willingness (adjusted odds ratio [aOR] 1.32, 95% CI 1.04-1.69). In a subanalysis, the willingness toward vaccination for daughters in men was significantly higher in the intervention group (aOR 1.46, 95% CI 1.05-2.02). However, such a difference was not observed among women (aOR 1.20, 95% CI 0.83-1.73). Conclusions: This study suggests that a brief web-based educational intervention increases the willingness of adults to consider the HPV vaccine for their children, especially among men. Thus, providing adequate information to men may be a useful strategy to improve the currently low rates of HPV vaccination. Trial Registration: UMIN Clinical Trials Registry UMIN000049745 (UMIN-CTR); https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000049745 %M 34569941 %R 10.2196/28355 %U https://www.jmir.org/2021/9/e28355 %U https://doi.org/10.2196/28355 %U http://www.ncbi.nlm.nih.gov/pubmed/34569941 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e26545 %T An Ostomy Self-management Telehealth Intervention for Cancer Survivors: Technology-Related Findings From a Randomized Controlled Trial %A Weinstein,Ronald S %A Holcomb,Michael J %A Mo,Julia %A Yonsetto,Peter %A Bojorquez,Octavio %A Grant,Marcia %A Wendel,Christopher S %A Tallman,Nancy J %A Ercolano,Elizabeth %A Cidav,Zuleyha %A Hornbrook,Mark C %A Sun,Virginia %A McCorkle,Ruth %A Krouse,Robert S %+ Arizona Telemedicine Program, The University of Arizona Health Sciences, 1501 N Campbell AHSL 1156, Tucson, AZ, 85724, United States, 1 5203733552, rweinstein@telemedicine.arizona.edu %K telehealth %K telemedicine %K cloud computing %K ostomy %K cancer survivors %K family caregivers %K self-management %K patient education %K videoconferencing %K mobile phone %D 2021 %7 27.9.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: An Ostomy Self-management Telehealth (OSMT) intervention by nurse educators and peer ostomates can equip new ostomates with critical knowledge regarding ostomy care. A telehealth technology assessment aim was to measure telehealth engineer support requirements for telehealth technology–related (TTR) incidents encountered during OSMT intervention sessions held via a secure cloud-based videoconferencing service, Zoom for Healthcare. Objective: This paper examines technology-related challenges, issues, and opportunities encountered in the use of telehealth in a randomized controlled trial intervention for cancer survivors living with a permanent ostomy. Methods: The Arizona Telemedicine Program provided telehealth engineering support for 105 OSMT sessions, scheduled for 90 to 120 minutes each, over a 2-year period. The OSMT groups included up to 15 participants, comprising 4-6 ostomates, 4-6 peer ostomates, 2 nurse educators, and 1 telehealth engineer. OSMT-session TTR incidents were recorded contemporaneously in detailed notes by the research staff. TTR incidents were categorized and tallied. Results: A total of 97.1% (102/105) OSMT sessions were completed as scheduled. In total, 3 OSMT sessions were not held owing to non–technology-related reasons. Of the 93 ostomates who participated in OSMT sessions, 80 (86%) completed their OSMT curriculum. TTR incidents occurred in 36.3% (37/102) of the completed sessions with varying disruptive impacts. No sessions were canceled or rescheduled because of TTR incidents. Disruptions from TTR incidents were minimized by following the TTR incident prevention and incident response plans. Conclusions: Telehealth videoconferencing technology can enable ostomates to participate in ostomy self-management education by incorporating dedicated telehealth engineering support. Potentially, OSMT greatly expands the availability of ostomy self-management education for new ostomates. Trial Registration: ClinicalTrials.gov NCT02974634; https://clinicaltrials.gov/ct2/show/NCT02974634 %M 34086595 %R 10.2196/26545 %U https://www.jmir.org/2021/9/e26545 %U https://doi.org/10.2196/26545 %U http://www.ncbi.nlm.nih.gov/pubmed/34086595 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 9 %P e28698 %T Development of and Experiences With an Informational Website on Early Labor: Qualitative User Involvement Study %A Myhre,Enid Leren %A Garnweidner-Holme,Lisa %A Dahl,Bente %A Reigstad,Marte Myhre %A Lukasse,Mirjam %+ Centre for Women’s, Family and Child Health, Faculty of Health Sciences, University of South-Eastern Norway, P O Box 235, Kongsberg, N-3603, Norway, 47 91698469, enid.myhre@usn.no %K early labor %K latent phase %K think aloud %K usability %K website %K labor %K pregnancy %K user-friendliness %K eHealth %K user satisfaction %D 2021 %7 27.9.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: The period of regular contractions before 4 cm of cervical dilatation is often referred to as the latent phase or early labor. Women find it challenging to prepare for and cope with this phase of labor, and easily accessed web-based information from reliable sources may be useful in this preparation. Objective: The aim of this study is to describe the development of a Norwegian website, Latens.no, for people seeking information on early labor and to explore users’ experiences with the website to increase its user-friendliness. Methods: We developed a website using an iterative process involving a multidisciplinary research team, health personnel, users, a graphic designer, and an expert in software development. We explored the website’s user-friendliness using semistructured individual interviews and the think-aloud method. All interviews were audio recorded and transcribed. We then analyzed the participants’ feedback on the website. Results: Participants included women who had recently given birth to their first baby (n=2), women who were pregnant with their first baby (n=4), and their partners (n=2). Results from participants’ experiences completing tasks included positive feedback related to the content of Latens.no, positive feedback related to the website’s design, and suggestions for improvement. Participants wanted to find information on early labor on the internet. Moreover, they found the information on the website relevant, trustworthy, and easy to read, and the design was attractive and easy to use. Overall, the participants performed the tasks easily, with few clicks and minimal effort. Conclusions: The think-aloud method, while performing tasks, allowed for detailed feedback. The participants confirmed the user-friendliness of the website but at the same time provided information enabling improvement. We expect that changes made based on this user-centered design study will further increase the usability and acceptability of Latens.no. %M 34569940 %R 10.2196/28698 %U https://formative.jmir.org/2021/9/e28698 %U https://doi.org/10.2196/28698 %U http://www.ncbi.nlm.nih.gov/pubmed/34569940 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e26721 %T The Association Between Patients' eHealth Literacy and Satisfaction With Shared Decision-making and Well-being: Multicenter Cross-sectional Study %A Xu,Richard Huan %A Zhou,Ling-Ming %A Wong,Eliza Lai-Yi %A Wang,Dong %+ School of Health Management, Southern Medical University, No. 1023 Shatai nan Road, Guangzhou, 510515, China, 86 61648573, dongw96@smu.edu.cn %K eHealth literacy %K shared decision-making %K well-being %K eHEALS %K ICECAP-A %D 2021 %7 24.9.2021 %9 Original Paper %J J Med Internet Res %G English %X 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 (β=.22; P<.001) and well-being (β=.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. %M 34559062 %R 10.2196/26721 %U https://www.jmir.org/2021/9/e26721 %U https://doi.org/10.2196/26721 %U http://www.ncbi.nlm.nih.gov/pubmed/34559062 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e19896 %T Factors Affecting Engagement in Web-Based Health Care Patient Information: Narrative Review of the Literature %A Oktay,Liam Alperen %A Abuelgasim,Eyad %A Abdelwahed,Aida %A Houbby,Nour %A Lampridou,Smaragda %A Normahani,Pasha %A Peters,Nicholas %A Jaffer,Usman %+ Imperial College NHS Trust, Praed Street, London, W2 0NE, United Kingdom, 44 7968872992, usman.jaffer@nhs.net %K patient education %K web-based health information %K internet %K patient engagement %K mobile phone %D 2021 %7 23.9.2021 %9 Review %J J Med Internet Res %G English %X 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. %M 34554104 %R 10.2196/19896 %U https://www.jmir.org/2021/9/e19896 %U https://doi.org/10.2196/19896 %U http://www.ncbi.nlm.nih.gov/pubmed/34554104 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e27063 %T Gaps in Public Awareness About BRCA and Genetic Testing in Prostate Cancer: Social Media Landscape Analysis %A Loeb,Stacy %A Massey,Philip %A Leader,Amy E %A Thakker,Sameer %A Falge,Emily %A Taneja,Sabina %A Byrne,Nataliya %A Rose,Meredith %A Joy,Matthew %A Walter,Dawn %A Katz,Matthew S %A Wong,Risa L %A Selvan,Preethi %A Keith,Scott W %A Giri,Veda N %+ Department of Urology and Population Health, New York University School of Medicine, 227 E 30th Street #612, New York, NY, 10016, United States, 1 7182619100, stacyloeb@gmail.com %K genetic testing %K BRCA %K prostate cancer %K breast cancer %K social media %K infodemiology %D 2021 %7 20.9.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Genetic testing, particularly for BRCA1/2, is increasingly important in prostate cancer (PCa) care, with impact on PCa management and hereditary cancer risk. However, the extent of public awareness and online discourse on social media is unknown, and presents opportunities to identify gaps and enhance population awareness and uptake of advances in PCa precision medicine. Objective: The objective of this study was to characterize activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and genetic testing for PCa compared with breast cancer, which has a long history of public awareness, advocacy, and prominent social media presence. Methods: The Symplur Signals online analytics platform was used to obtain metrics for tweets about (1) #BRCA and #breastcancer, (2) #BRCA and #prostatecancer, (3) #genetictesting and #breastcancer, and (4) #genetictesting and #prostatecancer from 2016 to 2020. We examined the total number of tweets, users, and reach for each hashtag, and performed content analysis for a subset of tweets. Facebook and YouTube were queried using analogous search terms, and engagement metrics were calculated. Results: During a 5-year period, there were 10,005 tweets for #BRCA and #breastcancer, versus 1008 tweets about #BRCA and #prostatecancer. There were also more tweets about #genetictesting and #breastcancer (n=1748), compared with #genetic testing and #prostatecancer (n=328). Tweets about genetic testing (12,921,954) and BRCA (75,724,795) in breast cancer also had substantially greater reach than those about PCa (1,463,777 and 4,849,905, respectively). Facebook groups and pages regarding PCa and BRCA/genetic testing had fewer average members, new members, and new posts, as well as fewer likes and followers, compared with breast cancer. Facebook videos had more engagement than YouTube videos across both PCa and breast cancer content. Conclusions: There is substantially less social media engagement about BRCA and genetic testing in PCa compared with breast cancer. This landscape analysis provides insights into strategies for leveraging social media platforms to increase public awareness about PCa germline testing, including use of Facebook to share video content and Twitter for discussions with health professionals. %M 34542414 %R 10.2196/27063 %U https://cancer.jmir.org/2021/3/e27063 %U https://doi.org/10.2196/27063 %U http://www.ncbi.nlm.nih.gov/pubmed/34542414 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 9 %P e24954 %T Development and Evaluation of a Decision Aid to Support Patients’ Participatory Decision-Making for Tumor-Specific and Palliative Therapy for Advanced Cancer: Protocol for a Pre-Post Study %A Laryionava,Katsiaryna %A Schildmann,Jan %A Wensing,Michael %A Wedding,Ullrich %A Surmann,Bastian %A Woydack,Lena %A Krug,Katja %A Winkler,Eva %+ Department of Medical Oncology, National Center for Tumor Diseases, Heidelberg University Hospital, Im Neuenheimer Feld 460, Heidelberg, 69120, Germany, 49 6221 56 36049, Eva.Winkler@med.uni-heidelberg.de %K decision aid %K neoplasms %K palliative care %K clinical trials %K longitudinal study %D 2021 %7 17.9.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: To support advanced cancer patients and their oncologists in therapeutic decisions, we aim to develop a decision aid (DA) in a multiphased, bicentric study. The DA aims to help patients to better understand risks and benefits of the available treatment options including the options of standard palliative care or cancer-specific treatment (ie, off-label drug use within an individual treatment plan). Objective: This study protocol outlines the development and testing of the DA in a pre-post study targeting a heterogeneous population of advanced cancer patients. Methods: In the first step, we will assess patients’ information and decisional needs as well as the views of the health care providers regarding the content and implementation of the DA. Through a scoping review, we aim to analyze specific characteristics of the decision-making process and to specify the treatment options, outcomes, and probabilities. An interdisciplinary research group of experts will develop and review the DA. In the second step, testing of the DA (design and field testing) with patients and oncologists will be conducted. As a last step, we will run a pre-post design study with 70 doctor-patient encounters to assess improvements on the primary study outcome: patients’ level of decisional conflict. In addition, the user acceptance of all involved parties will be tested. Results: Interviews with cancer patients, oncologists, and health care providers (ie, nurses, nutritionists) as well as a literature review from phase I have been completed. The field testing is scheduled for April 2021 to August 2021, with the final revision scheduled for September 2021. The pre-post study of the DA and acceptance testing are scheduled to start in October 2021 and shall be finished in September 2022. Conclusions: A unique feature of this study is the development of a DA for patients with different types of advanced cancer, which covers a wide range of topics relevant for patients near the end of life such as forgoing cancer-specific therapy and switching to best supportive care. Trial Registration: ClinicalTrials.gov NCT04606238; https://clinicaltrials.gov/ct2/show/NCT04606238. International Registered Report Identifier (IRRID): DERR1-10.2196/24954 %M 34533464 %R 10.2196/24954 %U https://www.researchprotocols.org/2021/9/e24954 %U https://doi.org/10.2196/24954 %U http://www.ncbi.nlm.nih.gov/pubmed/34533464 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e27634 %T Effects of Message Framing on Cancer Prevention and Detection Behaviors, Intentions, and Attitudes: Systematic Review and Meta-analysis %A Ainiwaer,Abidan %A Zhang,Shuai %A Ainiwaer,Xiayiabasi %A Ma,Feicheng %+ School of Information Management, Wuhan University, No 299 Bayi Road, Wuchang District, Wuhan, China, 86 86 13507119710, fchma@whu.edu.cn %K gain framing %K loss framing %K attitude %K intention %K behaviors %K cancer prevention %K cancer detection %D 2021 %7 16.9.2021 %9 Review %J J Med Internet Res %G English %X Background: With the increasing health care burden of cancer, public health organizations are increasingly emphasizing the importance of calling people to engage in long-term prevention and periodical detection. How to best deliver behavioral recommendations and health outcomes in messaging is an important issue. Objective: This study aims to disaggregate the effects of gain-framed and loss-framed messages on cancer prevention and detection behaviors and intentions and attitudes, which has the potential to inform cancer control programs. Methods: A search of three electronic databases (Web of Science, Scopus, and PubMed) was conducted for studies published between January 2000 and December 2020. After a good agreement achieved on a sample by two authors, the article selection (κ=0.8356), quality assessment (κ=0.8137), and data extraction (κ=0.9804) were mainly performed by one author. The standardized mean difference (attitude and intention) and the odds ratio (behaviors) were calculated to evaluate the effectiveness of message framing (gain-framed message and loss-framed message). Calculations were conducted, and figures were produced by Review Manager 5.3. Results: The title and abstract of 168 unique citations were scanned, of which 53 were included for a full-text review. A total of 24 randomized controlled trials were included, predominantly examining message framing on cancer prevention and detection behavior change interventions. There were 9 studies that used attitude to predict message framing effect and 16 studies that used intention, whereas 6 studies used behavior to examine the message framing effect directly. The use of loss-framed messages improved cancer detection behavior (OR 0.76, 95% CI 0.64-0.90; P=.001), and the results from subgroup analysis indicated that the effect would be weak with time. No effect of framing was found when effectiveness was assessed by attitudes (prevention: SMD=0.02, 95% CI –0.13 to 0.17; P=.79; detection: SMD=–0.05, 95% CI –0.15 to 0.05; P=.32) or intentions (prevention: SMD=–0.05, 95% CI –0.19 to 0.09; P=.48; detection: SMD=0.02, 95% CI –0.26 to 0.29; P=.92) among studies encouraging cancer prevention and cancer detection. Conclusions: Research has shown that it is almost impossible to change people's attitudes or intentions about cancer prevention and detection with a gain-framed or loss-framed message. However, loss-framed messages have achieved preliminary success in persuading people to adopt cancer detection behaviors. Future studies could improve the intervention design to achieve better intervention effectiveness. %M 34528887 %R 10.2196/27634 %U https://www.jmir.org/2021/9/e27634 %U https://doi.org/10.2196/27634 %U http://www.ncbi.nlm.nih.gov/pubmed/34528887 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e27576 %T A Smartphone-Based App to Improve Adjuvant Treatment Adherence to Multidisciplinary Decisions in Patients With Early-Stage Breast Cancer: Observational Study %A Yu,Jing %A Wu,Jiayi %A Huang,Ou %A Chen,Xiaosong %A Shen,Kunwei %+ Department of General Surgery, Comprehensive Breast Health Center, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, 197 Ruijin Er Road, Shanghai, 200025, China, 86 13564497086, chenxiaosong0156@hotmail.com %K breast cancer %K adherence %K multidisciplinary treatment %K adjuvant treatment %K smartphone-based app %K mobile phone %D 2021 %7 16.9.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Multidisciplinary treatment (MDT) and adjuvant therapy are associated with improved survival rates in breast cancer. However, nonadherence to MDT decisions is common in patients. We developed a smartphone-based app that can facilitate the full-course management of patients after surgery. Objective: This study aims to investigate the influence factors of treatment nonadherence and to determine whether this smartphone-based app can improve the compliance rate with MDTs. Methods: Patients who had received a diagnosis of invasive breast cancer and had undergone MDT between March 2013 and May 2019 were included. Patients were classified into 3 groups: Pre-App cohort (November 2017, before the launch of the app); App nonused, cohort (after November 2017 but not using the app); and App used cohort (after November 2017 and using the app). Univariate and multivariate analyses were performed to identify the factors related to MDT adherence. Compliance with specific adjuvant treatments, including chemotherapy, radiotherapy, endocrine therapy, and targeted therapy, was also evaluated. Results: A total of 4475 patients were included, with Pre-App, App nonused, and App used cohorts comprising 2966 (66.28%), 861 (19.24%), and 648 (14.48%) patients, respectively. Overall, 15.53% (695/4475) patients did not receive MDT recommendations; the noncompliance rate ranged from 27.4% (75/273) in 2013 to 8.8% (44/500) in 2019. Multivariate analysis demonstrated that app use was independently associated with adherence to adjuvant treatment. Compared with the patients in the Pre-App cohort, patients in the App used cohort were less likely to deviate from MDT recommendations (odds ratio [OR] 0.61, 95% CI 0.43-0.87; P=.007); no significant difference was found in the App nonused cohort (P=.77). Moreover, app use decreased the noncompliance rate for adjuvant chemotherapy (OR 0.41, 95% CI 0.27-0.65; P<.001) and radiotherapy (OR 0.49, 95% CI 0.25-0.96; P=.04), but not for anti-HER2 therapy (P=.76) or endocrine therapy (P=.39). Conclusions: This smartphone-based app can increase MDT adherence in patients undergoing adjuvant therapy; this was more obvious for adjuvant chemotherapy and radiotherapy. %M 34528890 %R 10.2196/27576 %U https://www.jmir.org/2021/9/e27576 %U https://doi.org/10.2196/27576 %U http://www.ncbi.nlm.nih.gov/pubmed/34528890 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e24515 %T Unique Features of a Web-Based Nutrition Website for Childhood Cancer Populations: Descriptive Study %A Wartenberg,Lisa %A Raber,Margaret %A Chandra,Joya %+ Department of Pediatrics Research, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Unit 853, Houston, TX, 77030-4000, United States, 1 17135635405, jchandra@mdanderson.org %K pediatric oncology %K web-based resources %K oncology nutrition %K culinary education %K oncology %K children %K pediatric %K nutrition %K culinary %K education %D 2021 %7 13.9.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Children with cancer experience a myriad of nutritional challenges that impact their nutrition status during treatment and into survivorship. Growing evidence suggests that weight at diagnosis impacts cancer outcomes, but provider guidance on nutrition and diet during treatment varies. Nutrition literacy and culinary resources may help mitigate some common nutritional problems; however, many patients may face barriers to accessing in-person classes. Along with dietitian-led clinical interventions, web-based resources such as the newly updated electronic cookbook (e-cookbook) created by The University of Texas MD Anderson Cancer Center, @TheTable, may facilitate access to nutrition and culinary education during treatment and into survivorship. Objective: We sought to define and describe the features and content of the @TheTable e-cookbook and compare it with analogous resources for a lay audience of patients with childhood cancer and childhood cancer survivors as well as their families. Methods: We evaluated freely available web-based resources via a popular online search engine (ie, Google). These searches yielded three web-based resources analogous to @TheTable: the American Institute for Cancer Research’s Healthy Recipes, The Children’s Hospital of San Antonio’s Culinary Health Education for Families Recipe for Life, and Ann Ogden Gaffney and Fred Hutchinson Cancer Research Center’s Cook for Your Life. These sites were analyzed for the following: number of recipes, search functionality, child or family focus, cancer focus, specific dietary guidance, videos or other media, and miscellaneous unique features. Results: Cook for Your Life and Culinary Health Education for Families Recipe for Life were the most comparable to @TheTable with respect to cancer focus and family focus, respectively. Healthy Recipes is the least user-friendly, with few search options and no didactic videos. Conclusions: The @TheTable e-cookbook is unique in its offering of child- and family-focused content centered on the cancer and survivorship experience. %M 34515643 %R 10.2196/24515 %U https://www.jmir.org/2021/9/e24515 %U https://doi.org/10.2196/24515 %U http://www.ncbi.nlm.nih.gov/pubmed/34515643 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e14908 %T Association Between eHealth Literacy in Online Health Communities and Patient Adherence: Cross-sectional Questionnaire Study %A Lu,Xinyi %A Zhang,Runtong %+ School of Management and E-business, Zhejiang Gongshang University, 18 Xuezheng Street, Qiantang District, Hangzhou, 310018, China, 86 18801329327, xinyilu@bjtu.edu.cn %K online health communities %K OHCs %K eHealth literacy %K patient adherence %K health information %K physician-patient communication %D 2021 %7 13.9.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 34515638 %R 10.2196/14908 %U https://www.jmir.org/2021/9/e14908 %U https://doi.org/10.2196/14908 %U http://www.ncbi.nlm.nih.gov/pubmed/34515638 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 9 %P e26220 %T Virtual Clinical and Precision Medicine Tumor Boards—Cloud-Based Platform–Mediated Implementation of Multidisciplinary Reviews Among Oncology Centers in the COVID-19 Era: Protocol for an Observational Study %A Blasi,Livio %A Bordonaro,Roberto %A Serretta,Vincenzo %A Piazza,Dario %A Firenze,Alberto %A Gebbia,Vittorio %+ La Maddalena Cancer Center, via San Lorenzo Colli n 312d, 90100, Palermo, 90100, Italy, 39 +39 091 6806710, vittorio.gebbia@gmail.com %K virtual tumor board %K multidisciplinary collaboration %K oncology %K multidisciplinary communication %K health services %K multidisciplinary oncology consultations %K virtual health %K digital health %K precision medicine %K tumor %K cancer %K cloud-based %K platform %K implementation %K oncology %K COVID-19 %D 2021 %7 10.9.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Multidisciplinary tumor boards play a pivotal role in the patient-centered clinical management and in the decision-making process to provide best evidence-based, diagnostic, and therapeutic care to patients with cancer. Among the barriers to achieve an efficient multidisciplinary tumor board, lack of time and geographical distance play a major role. Therefore, the elaboration of an efficient virtual multidisciplinary tumor board (VMTB) is a key point to successfully obtain an oncology team and implement a network among health professionals and institutions. This need is stronger than ever during the COVID-19 pandemic. Objective: This paper presents a research protocol for an observational study focused on exploring the structuring process and the implementation of a multi-institutional VMTB in Sicily, Italy. Other endpoints include analysis of cooperation between participants, adherence to guidelines, patients’ outcomes, and patient satisfaction. Methods: This protocol encompasses a pragmatic, observational, multicenter, noninterventional, prospective trial. The study’s programmed duration is 5 years, with a half-yearly analysis of the primary and secondary objectives’ measurements. Oncology care health professionals from various oncology subspecialties at oncology departments in multiple hospitals (academic and general hospitals as well as tertiary centers and community hospitals) are involved in a nonhierarchic manner. VMTB employs an innovative, virtual, cloud-based platform to share anonymized medical data that are discussed via a videoconferencing system both satisfying security criteria and compliance with the Health Insurance Portability and Accountability Act. Results: The protocol is part of a larger research project on communication and multidisciplinary collaboration in oncology units and departments spread in the Sicily region. The results of this study will particularly focus on the organization of VMTBs, involving oncology units present in different hospitals spread in the area, and creating a network to allow best patient care pathways and a hub-and-spoke relationship. The present results will also include data concerning organization skills and pitfalls, barriers, efficiency, number, and types with respect to clinical cases and customer satisfaction. Conclusions: VMTB represents a unique opportunity to optimize patient management through a patient-centered approach. An efficient virtualization and data-banking system is potentially time-saving, a source for outcome data, and a detector of possible holes in the hull of clinical pathways. The observations and results from this VMTB study may hopefully be useful to design nonclinical and organizational interventions that enhance multidisciplinary decision-making in oncology. International Registered Report Identifier (IRRID): DERR1-10.2196/26220 %M 34387553 %R 10.2196/26220 %U https://www.researchprotocols.org/2021/9/e26220 %U https://doi.org/10.2196/26220 %U http://www.ncbi.nlm.nih.gov/pubmed/34387553 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e26189 %T The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review %A Carini,Elettra %A Villani,Leonardo %A Pezzullo,Angelo Maria %A Gentili,Andrea %A Barbara,Andrea %A Ricciardi,Walter %A Boccia,Stefania %+ Section of Hygiene, University Department of Life Sciences and Public Health, Università Cattolica del Sacro Cuore, L go F Vito 1, Rome, 00168, Italy, 39 0630154396, angelomaria.pezzullo01@icatt.it %K digital health %K patient portal %K health outcomes %K patient satisfaction %K patient attitudes %K health service research %K health care efficiency %D 2021 %7 8.9.2021 %9 Review %J J Med Internet Res %G English %X 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. %M 34494966 %R 10.2196/26189 %U https://www.jmir.org/2021/9/e26189 %U https://doi.org/10.2196/26189 %U http://www.ncbi.nlm.nih.gov/pubmed/34494966 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e30409 %T TikTok as a Health Information Source: Assessment of the Quality of Information in Diabetes-Related Videos %A Kong,Wenwen %A Song,Shijie %A Zhao,Yuxiang Chris %A Zhu,Qinghua %A Sha,Ling %+ School of Information Management, Nanjing University, Xianlin Ave 163, Nanjing, 210023, China, 1 15951973800, ssong@smail.nju.edu.cn %K diabetes %K information quality %K infodemiology %K social media %K short video apps %K TikTok %D 2021 %7 1.9.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Diabetes has become one of the most prevalent chronic diseases, and many people living with diabetes use social media to seek health information. Recently, an emerging social media app, TikTok, has received much interest owing to its popularity among general health consumers. We notice that there are many videos about diabetes on TikTok. However, it remains unclear whether the information in these videos is of satisfactory quality. Objective: This study aimed to assess the quality of the information in diabetes-related videos on TikTok. Methods: We collected a sample of 199 diabetes-related videos in Chinese. The basic information presented in the videos was coded and analyzed. First, we identified the source of each video. Next, 2 independent raters assessed each video in terms of the completeness of six types of content (the definition of the disease, symptoms, risk factors, evaluation, management, and outcomes). Then, the 2 raters independently assessed the quality of information in the videos, using the DISCERN instrument. Results: In regard to the sources of the videos, we found 6 distinct types of uploaders; these included 3 kinds of individual users (ie, health professionals, general users, and science communicators) and 3 types of organizational users (ie, news agencies, nonprofit organizations, and for-profit organizations). Regarding content, our results show that the videos were primarily about diabetes management and contained limited information on the definition of the disease, symptoms, risk factors, evaluation, and outcomes. The overall quality of the videos was acceptable, on average, although the quality of the information varied, depending on the sources. The videos created by nonprofit organizations had the highest information quality, while the videos contributed by for-profit organizations had the lowest information quality. Conclusions: Although the overall quality of the information in the diabetes videos on TikTok is acceptable, TikTok might not fully meet the health information needs of patients with diabetes, and they should exercise caution when using TikTok as a source of diabetes-related information. %M 34468327 %R 10.2196/30409 %U https://www.jmir.org/2021/9/e30409 %U https://doi.org/10.2196/30409 %U http://www.ncbi.nlm.nih.gov/pubmed/34468327 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e30492 %T COVID-19 Communication From Seven Health Care Institutions in North Texas for English- and Spanish-Speaking Cancer Patients: Mixed Method Website Study %A Higashi,Robin T %A Sweetenham,John W %A Israel,Aimee D %A Tiro,Jasmin A %+ University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd, Dallas, TX, 75390-8557, United States, 1 214 648 3645, robin.higashi@utsouthwestern.edu %K COVID-19 %K coronavirus %K safety net %K internet %K communication %D 2021 %7 31.8.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: The COVID-19 pandemic has created an urgent need to rapidly disseminate health information, especially to those with cancer, because they face higher morbidity and mortality rates. At the same time, the pandemic’s disproportionate impact on Latinx populations underscores the need for information to reach Spanish speakers. However, the equity of COVID-19 information communicated through institutions’ online media to Spanish-speaking cancer patients is unknown. Objective: We conducted a multimodal, mixed method document review study to evaluate the equity of online information about COVID-19 and cancer available to English- and Spanish-speaking populations from seven health care institutions in North Texas, where one in five adults is Spanish-speaking. Our focus was less on the “digital divide,” which conveys disparities in access to computers and the internet based on the race/ethnicity, education, and income of at-risk populations; rather, our study asks the following question: to what extent is online content useful and culturally appropriate in meeting Spanish speakers’ information needs? Methods: We reviewed 50 websites (33 English and 17 Spanish) over a period of 1 week in the middle of May 2020. We sampled seven institutions’ main oncology and COVID web pages, and both internal (institutional) and external (noninstitutional) linked content. We conducted several analyses for each sampled page, including (1) thematic content analysis, (2) literacy level analysis using Readability Studio software, (3) coding using the Patient Education and Materials Assessment Tool (PEMAT), and (4) descriptive analysis of video and diversity content. Results: The themes most frequently addressed on English and Spanish websites differed. While “resources/FAQs” were frequently cited themes on both websites, English websites more frequently addressed “news/updates” and “cancer+COVID,” and Spanish websites addressed “protection” and “COVID data.” Spanish websites had on average a lower literacy level (11th grade) than English websites (13th grade), although still far above the recommended guideline of 6th to 8th grade. The PEMAT’s overall average accessibility score was the same for English (n=33 pages) and Spanish pages (n=17 pages) at 82%. Among the Dallas-Fort Worth organizations, the average accessibility of Spanish pages (n=7) was slightly lower than that of English pages (n=19) (77% vs 81%), due mostly to the discrepancy in English-only videos and visual aids. Of the 50 websites, 12 (24%) had embedded videos; however, 100% of videos were in English, including one on a Spanish website. Conclusions: We identified an uneven response among the seven health care institutions for providing equitable information to Spanish-speaking Dallas-Fort Worth residents concerned about COVID and cancer. Spanish speakers lack equal access in both diversity of content about COVID-19 and access to other websites, leaving an already vulnerable cancer patient population at greater risk. We recommend several specific actions to enhance content and navigability for Spanish speakers. %M 34346886 %R 10.2196/30492 %U https://cancer.jmir.org/2021/3/e30492 %U https://doi.org/10.2196/30492 %U http://www.ncbi.nlm.nih.gov/pubmed/34346886 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 8 %P e21938 %T Effects of the Interactive Web-Based Video “Mon Coeur, Mon BASIC” on Drug Adherence of Patients With Myocardial Infarction: Randomized Controlled Trial %A Bruggmann,Christel %A Adjedj,Julien %A Sardy,Sylvain %A Muller,Olivier %A Voirol,Pierre %A Sadeghipour,Farshid %+ Department of Pharmacy, University Hospital of Geneva, Rue Gabrielle Perret-Gentil 4, Geneva, 1205, Switzerland, 41 796146714, cbruggmann@gmail.com %K acute coronary syndrome %K eHealth %K drug adherence %K mHealth %K mobile phone %D 2021 %7 30.8.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Secondary prevention strategies after acute coronary syndrome (ACS) presentation with the use of drug combinations are essential to reduce the recurrence of cardiovascular events. However, lack of drug adherence is known to be common in this population and to be related to treatment failure. To improve drug adherence, we developed the “Mon Coeur, Mon BASIC” video. This online video has been specifically designed to inform patients about their disease and their current medications. Interactivity has been used to increase patient attention, and the video can also be viewed on smartphones and tablets. Objective: The objective of this study was to assess the long-term impact of an informative web-based video on drug adherence in patients admitted for an ACS. Methods: This randomized study was conducted with consecutive patients admitted to University Hospital of Lausanne for ACS. We randomized patients to an intervention group, which had access to the web-based video and a short interview with the pharmacist, and a control group receiving usual care. The primary outcome was the difference in drug adherence, assessed with the Adherence to Refills and Medication Scale (ARMS; 9 multiple-choice questions, scores ranging from 12 for perfect adherence to 48 for lack of adherence), between groups at 1, 3, and 6 months. We assessed the difference in ARMS score between both groups with the Wilcoxon rank sum test. Secondary outcomes were differences in knowledge, readmissions, and emergency room visits between groups and patients’ satisfaction with the video. Results: Sixty patients were included at baseline. The median age of the participants was 59 years (IQR 49-69), and 85% (51/60) were male. At 1 month, 51 patients participated in the follow-up, 50 patients participated at 3 months, and 47 patients participated at 6 months. The mean ARMS scores at 1 and 6 months did not differ between the intervention and control groups (13.24 vs 13.15, 13.52 vs 13.68, respectively). At 3 months, this score was significantly lower in the intervention group than in the control group (12.54 vs 13.75; P=.03). We observed significant increases in knowledge from baseline to 1 and 3 months, but not to 6 months, in the intervention group. Readmissions and emergency room visits have been very rare, and the proportion was not different among groups. Patients in the intervention group were highly satisfied with the video. Conclusions: Despite a lower sample size than we expected to reach, we observed that the “Mon Coeur, Mon BASIC” web-based interactive video improved patients’ knowledge and seemed to have an impact on drug adherence. These results are encouraging, and the video will be offered to all patients admitted to our hospital with ACS. Trial Registration: ClinicalTrials.gov NCT03949608; https://clinicaltrials.gov/ct2/show/NCT03949608 %M 34459744 %R 10.2196/21938 %U https://www.jmir.org/2021/8/e21938 %U https://doi.org/10.2196/21938 %U http://www.ncbi.nlm.nih.gov/pubmed/34459744 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 9 %N 8 %P e28104 %T Supporting Women Undergoing IVF Treatment With Timely Patient Information Through an App: Randomized Controlled Trial %A Timmers,Thomas %A Keijsers,Manouk %A Kremer,Jan A M %A Janssen,Loes %A Smeenk,Jesper %+ IQ healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, Netherlands, 31 24 3615305, thomas@interactivestudios.nl %K patient education %K fertilization in vitro %K mobile health %K health literacy %K gynecology %D 2021 %7 27.8.2021 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Since the introduction of assisted reproductive technologies in 1978, over 2 million in vitro fertilization (IVF) babies have been born worldwide. Patients play a vital role in the success of this treatment. They are required to take fertility medication (hormone injections) to activate the ovaries to produce a sufficient number of oocytes. Later, they need to take medication to increase the chance of the embryo surviving inside the uterus. Patients are educated during an intake consultation at the start of the treatment to minimize the emotional burden and reduce noncompliance. The consultation lasts about 30 to 45 minutes and covers all essential subjects. Even though ample time and energy is spent on patient education, patients still feel anxious, unknowledgeable, and unsupported. As such, electronic health utilizing a smartphone or tablet app can offer additional support, as it allows health care professionals to provide their patients with the correct information at the right time by using push notifications. Objective: This randomized controlled trial aimed to evaluate the capacity of an app to support IVF patients throughout the different phases of their treatment and assess its effectiveness. The study's primary outcome was to determine the patients’ level of satisfaction with the information provided. The secondary outcomes included their level of knowledge, ability to administer the medication, overall experienced quality of the treatment, health care consumption, and app usage. Methods: This study was performed at a specialized fertility clinic of the nonacademic teaching hospital Elisabeth-TweeSteden Ziekenhuis in Tilburg, the Netherlands. Patients who were scheduled for IVF or intracytoplasmic sperm injection treatments between April 2018 and August 2019 were invited to participate in a physician-blinded, randomized controlled trial. Results: In total, 54 patients participated (intervention group: n=29). Patients in the intervention group demonstrated a higher level of satisfaction on a 0 to 10 scale (mean 8.43, SD 1.03 vs mean 7.70, SD 0.66; P=.004). In addition, they were more knowledgeable about the different elements of the treatment on a 7 to 35 scale (mean 27.29, SD 2.94 vs mean 23.05, SD 2.76; P<.001). However, the difference disappeared over time. There were no differences between the two patient groups on the other outcomes. In total, 25 patients in the intervention group used the app 1425 times, an average of 57 times per patient. Conclusions: Our study demonstrates that, in comparison with standard patient education, using an app to provide patients with timely information increases their level of satisfaction. Furthermore, using the app leads to a higher level of knowledge about the steps and procedures of IVF treatment. Finally, the app’s usage statistics demonstrate patients’ informational needs and their willingness to use an electronic health application as part of their treatment. Trial Registration: Netherlands Trial Register (NTR) 6959; https://www.trialregister.nl/trial/6959 %M 34448725 %R 10.2196/28104 %U https://mhealth.jmir.org/2021/8/e28104 %U https://doi.org/10.2196/28104 %U http://www.ncbi.nlm.nih.gov/pubmed/34448725 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 8 %P e27824 %T Informing Patients With Esophagogastric Cancer About Treatment Outcomes by Using a Web-Based Tool and Training: Development and Evaluation Study %A van de Water,Loïs F %A van den Boorn,Héctor G %A Hoxha,Florian %A Henselmans,Inge %A Calff,Mart M %A Sprangers,Mirjam A G %A Abu-Hanna,Ameen %A Smets,Ellen M A %A van Laarhoven,Hanneke W M %+ Department of Medical Oncology, Amsterdam University Medical Centers, University of Amsterdam, Meibergdreef 9, Amsterdam, , Netherlands, 31 205665955, h.vanlaarhoven@amsterdamumc.nl %K prediction tool %K communication skills training %K shared decision-making %K risk communication %K treatment outcomes %K esophageal cancer %K gastric cancer %K patient-physician communication %D 2021 %7 27.8.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Due to the increasing use of shared decision-making, patients with esophagogastric cancer play an increasingly important role in the decision-making process. To be able to make well-informed decisions, patients need to be adequately informed about treatment options and their outcomes, namely survival, side effects or complications, and health-related quality of life. Web-based tools and training programs can aid physicians in this complex task. However, to date, none of these instruments are available for use in informing patients with esophagogastric cancer about treatment outcomes. Objective: This study aims to develop and evaluate the feasibility of using a web-based prediction tool and supporting communication skills training to improve how physicians inform patients with esophagogastric cancer about treatment outcomes. By improving the provision of treatment outcome information, we aim to stimulate the use of information that is evidence-based, precise, and personalized to patient and tumor characteristics and is communicated in a way that is tailored to individual information needs. Methods: We designed a web-based, physician-assisted prediction tool—Source—to be used during consultations by using an iterative, user-centered approach. The accompanying communication skills training was developed based on specific learning objectives, literature, and expert opinions. The Source tool was tested in several rounds—a face-to-face focus group with 6 patients and survivors, semistructured interviews with 5 patients, think-aloud sessions with 3 medical oncologists, and interviews with 6 field experts. In a final pilot study, the Source tool and training were tested as a combined intervention by 5 medical oncology fellows and 3 esophagogastric outpatients. Results: The Source tool contains personalized prediction models and data from meta-analyses regarding survival, treatment side effects and complications, and health-related quality of life. The treatment outcomes were visualized in a patient-friendly manner by using pictographs and bar and line graphs. The communication skills training consisted of blended learning for clinicians comprising e-learning and 2 face-to-face sessions. Adjustments to improve both training and the Source tool were made according to feedback from all testing rounds. Conclusions: The Source tool and training could play an important role in informing patients with esophagogastric cancer about treatment outcomes in an evidence-based, precise, personalized, and tailored manner. The preliminary evaluation results are promising and provide valuable input for the further development and testing of both elements. However, the remaining uncertainty about treatment outcomes in patients and established habits in doctors, in addition to the varying trust in the prediction models, might influence the effectiveness of the tool and training in daily practice. We are currently conducting a multicenter clinical trial to investigate the impact that the combined tool and training have on the provision of information in the context of treatment decision-making. %M 34448703 %R 10.2196/27824 %U https://www.jmir.org/2021/8/e27824 %U https://doi.org/10.2196/27824 %U http://www.ncbi.nlm.nih.gov/pubmed/34448703 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 8 %P e26395 %T Association Between Social Media Use and Cancer Screening Awareness and Behavior for People Without a Cancer Diagnosis: Matched Cohort Study %A Qin,Lei %A Zhang,Xiaomei %A Wu,Anlin %A Miser,James S %A Liu,Yen-Lin %A Hsu,Jason C %A Shia,Ben-Chang %A Ye,Linglong %+ School of Public Affairs, Xiamen University, No.422, Siming South Road, Xiamen, 361005, China, 86 5922182783, leyloria@gmail.com %K social media %K cancer screening awareness %K cancer screening behavior %K gender-specific effects %K propensity-score matching %K general population %D 2021 %7 27.8.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 34448708 %R 10.2196/26395 %U https://www.jmir.org/2021/8/e26395 %U https://doi.org/10.2196/26395 %U http://www.ncbi.nlm.nih.gov/pubmed/34448708 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 9 %N 8 %P e26703 %T Effects of a Personalized Smartphone App on Bowel Preparation Quality: Randomized Controlled Trial %A van der Zander,Quirine E W %A Reumkens,Ankie %A van de Valk,Bas %A Winkens,Bjorn %A Masclee,Ad A M %A de Ridder,Rogier J J %+ GROW, School for Oncology and Developmental Biology, Maastricht University, Universiteitssingel 40, Maastricht, 6229 ER, Netherlands, 31 433875021, q.vanderzander@maastrichtuniversity.nl %K colonoscopy %K laxatives %K bowel preparation %K smartphone application %K smartphone %K patient satisfaction %K randomized controlled trial %K mobile phone %K mHealth %D 2021 %7 19.8.2021 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Adequate bowel preparation is essential for the visualization of the colonic mucosa during colonoscopy. However, the rate of inadequate bowel preparation is still high, ranging from 18% to 35%; this may lead to a higher risk of missing clinically relevant lesions, procedural difficulties, prolonged procedural time, an increased number of interval colorectal carcinomas, and additional health care costs. Objective: The aims of this study are to compare bowel preparation instructions provided via a personalized smartphone app (Prepit, Ferring B V) with regular written instructions for bowel preparation to improve bowel preparation quality and to evaluate patient satisfaction with the bowel preparation procedure. Methods: Eligible patients scheduled for an outpatient colonoscopy were randomized to a smartphone app group or a control group. Both the groups received identical face-to-face education from a research physician, including instructions about the colonoscopy procedure, diet restrictions, and laxative intake. In addition, the control group received written information, whereas the smartphone app group was instructed to use the smartphone app instead of the written information for the actual steps of the bowel preparation schedule. All patients used bisacodyl and sodium picosulfate with magnesium citrate as laxatives. The quality of bowel preparation was scored using the Boston Bowel Preparation Scale (BBPS) by blinded endoscopists. Patient satisfaction was measured using the Patient Satisfaction Questionnaire-18. Results: A total of 87 patients were included in the smartphone app group and 86 in the control group. The mean total BBPS score was significantly higher in the smartphone app group (mean 8.3, SD 0.9) than in the control group (mean 7.9, SD 1.2; P=.03). The right colon showed a significantly higher bowel preparation score in the smartphone app group (mean 2.7, SD 0.5 vs mean 2.5, SD 0.6; P=.04). No significant differences were observed in segment scores for the mean transverse colon (mean 2.8, SD 0.4 vs mean 2.8, SD 0.4; P=.34) and left colon (mean 2.8, SD 0.4 vs mean 2.6, SD 0.5; P=.07). General patient satisfaction was high for the smartphone app group (mean 4.4, SD 0.7) but showed no significant difference when compared with the control group (mean 4.3, SD 0.8; P=.32). Conclusions: Our personalized smartphone app significantly improved bowel preparation quality compared with regular written instructions for bowel preparation. In particular, in the right colon, the BBPS score improved, which is of clinical relevance because the right colon is considered more difficult to clean and the polyp detection rate in the right colon improves with improvement of bowel cleansing of the right colon. No further improvement in patient satisfaction was observed compared with patients receiving regular written instructions. Trial Registration: ClinicalTrials.gov NCT03677050; https://clinicaltrials.gov/ct2/show/NCT03677050 %M 34420924 %R 10.2196/26703 %U https://mhealth.jmir.org/2021/8/e26703 %U https://doi.org/10.2196/26703 %U http://www.ncbi.nlm.nih.gov/pubmed/34420924 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 8 %P e26887 %T Analysis of Hospital Quality Measures and Web-Based Chargemasters, 2019: Cross-sectional Study %A Patel,Kunal N %A Mazurenko,Olena %A Ford,Eric %+ Northern Illinois University, 1425 West Lincoln Highway, DeKalb, IL, 60115, United States, 1 815 753 1891, kpatel27@niu.edu %K chargemaster %K standard charge %K price transparency %K health care %K diagnosis-related group %K DRG %K quality measures %K the Centers for Medicare and Medicaid Services regulation %K CMS %D 2021 %7 19.8.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: The federal health care price transparency regulation from 2019 is aimed at bending the health care cost curve by increasing the availability of hospital pricing information for the public. Objective: This study aims to examine the associations between publicly reported diagnosis-related group chargemaster prices on the internet and quality measures, process indicators, and patient-reported experience measures. Methods: In this cross-sectional study, we collected and analyzed a random 5.02% (212/4221) stratified sample of US hospital prices in 2019 using descriptive statistics and multivariate analysis. Results: We found extreme price variation in shoppable services and significantly greater price variation for medical versus surgical services (P=.006). In addition, we found that quality indicators were positively associated with standard charges, such as mortality (β=.929; P<.001) and readmissions (β=.514; P<.001). Other quality indicators, such as the effectiveness of care (β=−.919; P<.001), efficient use of medical imaging (β=−.458; P=.001), and patient recommendation scores (β=−.414; P<.001), were negatively associated with standard charges. Conclusions: We found that hospital chargemasters display wide variations in prices for medical services and procedures and match variations in quality measures. Further work is required to investigate 100% of US hospital prices posted publicly on the internet and their relationship with quality measures. %M 34420914 %R 10.2196/26887 %U https://formative.jmir.org/2021/8/e26887 %U https://doi.org/10.2196/26887 %U http://www.ncbi.nlm.nih.gov/pubmed/34420914 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 8 %P e23367 %T Patients With Cancer Searching for Cancer- or Health-Specific Web-Based Information: Performance Test Analysis %A Lange-Drenth,Lukas %A Schulz,Holger %A Endsin,Gero %A Bleich,Christiane %+ Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, Hamburg, 20246, Germany, 49 040741056811, lu.lange@uke.de %K telemedicine %K eHealth %K eHealth literacy %K digital literacy %K internet %K web-based %K health information %K health education %K cancer %K mobile phone %D 2021 %7 16.8.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 34398801 %R 10.2196/23367 %U https://www.jmir.org/2021/8/e23367 %U https://doi.org/10.2196/23367 %U http://www.ncbi.nlm.nih.gov/pubmed/34398801 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 8 %P e29556 %T Digital Surveillance Through an Online Decision Support Tool for COVID-19 Over One Year of the Pandemic in Italy: Observational Study %A Tozzi,Alberto Eugenio %A Gesualdo,Francesco %A Urbani,Emanuele %A Sbenaglia,Alessandro %A Ascione,Roberto %A Procopio,Nicola %A Croci,Ileana %A Rizzo,Caterina %+ Multifactorial and Complex Diseases Research Area, Bambino Gesù Children's Hospital IRCCS, Piazza S. Onofrio, 4, Rome, 00165, Italy, 39 3388437474, francesco.gesualdo@opbg.net %K COVID-19 %K public health %K surveillance %K digital surveillance %K internet %K online decision support system %K decision support %K support %K online tool %K Italy %K observational %D 2021 %7 13.8.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Italy has experienced severe consequences (ie, hospitalizations and deaths) during the COVID-19 pandemic. Online decision support systems (DSS) and self-triage applications have been used in several settings to supplement health authority recommendations to prevent and manage COVID-19. A digital Italian health tech startup, Paginemediche, developed a noncommercial, online DSS with a chat user interface to assist individuals in Italy manage their potential exposure to COVID-19 and interpret their symptoms since early in the pandemic. Objective: This study aimed to compare the trend in online DSS sessions with that of COVID-19 cases reported by the national health surveillance system in Italy, from February 2020 to March 2021. Methods: We compared the number of sessions by users with a COVID-19–positive contact and users with COVID-19–compatible symptoms with the number of cases reported by the national surveillance system. To calculate the distance between the time series, we used the dynamic time warping algorithm. We applied Symbolic Aggregate approXimation (SAX) encoding to the time series in 1-week periods. We calculated the Hamming distance between the SAX strings. We shifted time series of online DSS sessions 1 week ahead. We measured the improvement in Hamming distance to verify the hypothesis that online DSS sessions anticipate the trends in cases reported to the official surveillance system. Results: We analyzed 75,557 sessions in the online DSS; 65,207 were sessions by symptomatic users, while 19,062 were by contacts of individuals with COVID-19. The highest number of online DSS sessions was recorded early in the pandemic. Second and third peaks were observed in October 2020 and March 2021, respectively, preceding the surge in notified COVID-19 cases by approximately 1 week. The distance between sessions by users with COVID-19 contacts and reported cases calculated by dynamic time warping was 61.23; the distance between sessions by symptomatic users was 93.72. The time series of users with a COVID-19 contact was more consistent with the trend in confirmed cases. With the 1-week shift, the Hamming distance between the time series of sessions by users with a COVID-19 contact and reported cases improved from 0.49 to 0.46. We repeated the analysis, restricting the time window to between July 2020 and December 2020. The corresponding Hamming distance was 0.16 before and improved to 0.08 after the time shift. Conclusions: Temporal trends in the number of online COVID-19 DSS sessions may precede the trend in reported COVID-19 cases through traditional surveillance. The trends in sessions by users with a contact with COVID-19 may better predict reported cases of COVID-19 than sessions by symptomatic users. Data from online DSS may represent a useful supplement to traditional surveillance and support the identification of early warning signals in the COVID-19 pandemic. %M 34292866 %R 10.2196/29556 %U https://www.jmir.org/2021/8/e29556 %U https://doi.org/10.2196/29556 %U http://www.ncbi.nlm.nih.gov/pubmed/34292866 %0 Journal Article %@ 2561-1011 %I JMIR Publications %V 5 %N 2 %P e23464 %T A Patient Decision Aid for Anticoagulation Therapy in Patients With Nonvalvular Atrial Fibrillation: Development and Pilot Study %A de Castro,Kim Paul %A Chiu,Harold Henrison %A De Leon-Yao,Ronna Cheska %A Almelor-Sembrana,Lorraine %A Dans,Antonio Miguel %+ Department of Medicine, Philippine General Hospital, University of the Philippines, Taft Avenue, Manila, Philippines, 63 9989563472, kimpauldecastro@gmail.com %K shared decision-making %K patient decision aid %K atrial fibrillation %K anticoagulation %K stroke prevention %K mHealth %K mobile health %D 2021 %7 12.8.2021 %9 Original Paper %J JMIR Cardio %G English %X Background: Atrial fibrillation (AF) is one of the most common predisposing factors for ischemic stroke worldwide. Because of this, patients with AF are prescribed anticoagulant medications to decrease the risk. The availability of different options for oral anticoagulation makes it difficult for some patients to decide a preferred choice of medication. Clinical guidelines often recommend enhancing the decision-making process of patients by increasing their involvement in health decisions. In particular, the use of patient decision aids (PDAs) in patients with AF was associated with increased knowledge and increased likelihood of making a choice. However, the majority of available PDAs are from Western countries. Objective: We aimed to develop and pilot test a PDA to help patients with nonvalvular AF choose an oral anticoagulant for stroke prevention in the local setting. Outcomes were (1) reduction in patient decisional conflict, (2) improvement in patient knowledge, and (3) patient and physician acceptability. Methods: We followed the International Patient Decision Aid Standards (IPDAS) to develop a mobile app–based PDA for anticoagulation therapy in patients with nonvalvular AF. Focus group discussions identified decisional needs, which were subsequently incorporated into the PDA to compare choices for anticoagulation. Based on recommendations, the prototype PDA was rendered by at least 30 patients and 30 physicians. Decisional conflict and patient knowledge were tested before and after the PDA was implemented. Patient acceptability and physician acceptability were measured after each encounter. Results: Anticoagulant options were compared by the PDA using three factors that were identified (impact on stroke and bleeding risk, and price). The comparisons were presented as tables and graphs. The prototype PDA was rendered by 30 doctors and 37 patients for pilot testing. The mean duration of the encounters was 15 minutes. The decisional conflict score reduced by 35 points (100-point scale; P<.001). The AF knowledge score improved from 10 to 15 (P<.001). The PDA was acceptable for both patients and doctors. Conclusions: Our study showed that an app-based PDA for anticoagulation therapy in patients with nonvalvular AF (1) reduced patient decisional conflict, (2) improved patient knowledge, and (3) was acceptable to patients and physicians. A PDA is potentially acceptable and useful in our setting. A randomized controlled trial is warranted to test its effectiveness compared to usual care. PDAs for other conditions should also be developed. %M 34385138 %R 10.2196/23464 %U https://cardio.jmir.org/2021/2/e23464 %U https://doi.org/10.2196/23464 %U http://www.ncbi.nlm.nih.gov/pubmed/34385138 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 8 %P e27477 %T Informed Decision-making for Health Insurance Enrollment: Survey Study %A Colón-Morales,Coralys M %A Giang,Wayne C W %A Alvarado,Michelle %+ Department of Industrial and Systems Engineering, University of Florida, 303 Weil Hall, Gainesville, FL, 32603, United States, 1 (352) 392 1464, ccolonmorales@ufl.edu %K health insurance %K information %K sources %K survey %K literacy %D 2021 %7 12.8.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Health insurance enrollment is a difficult financial decision with large health impacts. Challenges such as low health insurance literacy and lack of knowledge about choosing a plan further complicate this decision-making process. Therefore, to support consumers in their choice of a health insurance plan, it is essential to understand how individuals go about making this decision. Objective: This study aims to understand the sources of information used by individuals to support their employer-provided health insurance enrollment decisions. It seeks to describe how individual descriptive factors lead to choosing a particular type of information source. Methods: An introduction was presented on health insurance plan selection and the sources of information used to support these decisions from the 1980s to the present. Subsequently, an electronic survey of 151 full-time faculty and staff members was conducted. The survey consisted of four sections: demographics, sources of information, health insurance literacy, and technology acceptance. Descriptive statistics were used to show the demographic characteristics of the 126 eligible respondents and to study the response behaviors in the remaining survey sections. Proportion data analysis was performed using the Cochran-Armitage trend test to understand the strength of the association between our variables and the types of sources used by the respondents. Results: In terms of demographics, most of the respondents were women (103/126, 81.7%), represented a small household (1-2 persons; 87/126, 69%), and used their insurance 3-12 times a year (52/126, 41.3%). They assessed themselves as having moderate to high health insurance literacy and high acceptance of technology. The most selected and top-ranked sources were Official employer or state websites and Official Human Resources Virtual Benefits Counselor Alex. From our data analysis, we found that the use of official primary sources was constant across age groups and health insurance use groups. Meanwhile, the use of friends or family as a primary source slightly decreased as age and use increased. Conclusions: In this exploratory study, we identified the main sources of health insurance information among full-time employees from a large state university and found that most of the respondents needed 2-3 sources to gather all the information that they desired. We also studied and identified the relationships between individual factors (such as age, gender, and literacy) and 2 dependent variables on the types of primary sources of information. We encountered several limitations, which will be addressed in future studies. %M 34387555 %R 10.2196/27477 %U https://formative.jmir.org/2021/8/e27477 %U https://doi.org/10.2196/27477 %U http://www.ncbi.nlm.nih.gov/pubmed/34387555 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 8 %P e28855 %T Design of the Maternal Website EMAeHealth That Supports Decision-Making During Pregnancy and in the Postpartum Period: Collaborative Action Research Study %A Artieta-Pinedo,Isabel %A Paz-Pascual,Carmen %A Bully,Paola %A Espinosa,Maite %A , %+ Osakidetza-Basque Health Service, Biocruces-Bizkaia Health Research Institute, Osi Barakaldo-Sestao, Lurkizaga S/N, Barakaldo, 48901, Spain, 34 946006667, misabel.artieta@ehu.eus %K prenatal education %K women %K patient decision aid %K decision-making %K clinical decision support systems %K action research and pregnancy %K implementation science %K health service needs and demands %D 2021 %7 9.8.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Despite the benefit maternal education has for women, it needs new tools to increase its effectiveness and scope, in tune with the needs of current users. Objective: We attempted to develop a multifunctional personalized eHealth platform aimed at the self-management of health in relation to maternity, which can be considered a flexible and adaptable maternal education tool. Methods: The International Patient Decision Aid Standards (IPDAS) were applied. A website prototype was developed for implementation in the public health system using a collaborative action research process, in which experts and patients participate, with qualitative research techniques, as well as focus groups, prioritization, and consensus techniques. Results: We have proposed a website that includes (1) systematically updated information related to clinical practice guidelines, (2) interaction between peers and users/professionals, (3) instruments for self-assessment of health needs as a basis for working on counseling, agreement on actions, help in the search for resources, support in decision-making, and monitoring and evaluation of results, and (4) access for women to their clinical data and the option of sharing the data with other health agents. These components, with different access requirements, would be reviewed through iterative cycles depending on the frequency and effectiveness resulting from their use and would be accessible from any digital device. Conclusions: A website that supports maternal education should contain not only information, but also resources for individual attention and social support. Its usefulness for the health and satisfaction of women should be evaluated in various different environments. %M 34383670 %R 10.2196/28855 %U https://formative.jmir.org/2021/8/e28855 %U https://doi.org/10.2196/28855 %U http://www.ncbi.nlm.nih.gov/pubmed/34383670 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e24994 %T Content Analysis and Quality Evaluation of Cesarean Delivery–Related Videos on YouTube: Cross-sectional Study %A Lee,Kyong-No %A Joo,Yeon Ji %A Choi,So Yeon %A Park,Sung Taek %A Lee,Keun-Young %A Kim,Youngmi %A Son,Ga-Hyun %+ Department of Obstetrics and Gynecology, Hallym University Kangnam Sacred Heart Hospital, Daelim-Dong, Yeoungdeungpo-Gu 948-1, Seoul, 07441, Republic of Korea, 82 2 829 5114, ntr5017@naver.com %K cesarean delivery %K YouTube %K internet %K quality of information %D 2021 %7 30.7.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: YouTube is one of the most popular open-access video-sharing websites, and it is also used to obtain health care information. Cesarean delivery is the most common major surgical intervention in many countries. Videos related to cesarean delivery have also been uploaded to YouTube. However, no study has explored the overall quality of cesarean delivery videos on the platform. Objective: The objective of this study was to analyze the content and evaluate the quality of the most frequently viewed videos related to cesarean delivery that are accessible on YouTube. Methods: We searched for a total of 18 terms by combining the 6 terms retrieved from Google AdWords and the 3 terms c section, cesarean section, and cesarean delivery, which are used interchangeably. Videos were sorted by view count, and the 100 videos with the highest view counts were chosen. The number of views, duration, likes and dislikes, content type, and source of each video were recorded. In evaluating the quality of the videos, we referred to a previous study. Additionally, we developed a detailed scoring method that comprehensively evaluates the videos related to cesarean delivery by including the necessary information for each element of the cesarean delivery and whether scientific evidence was presented. Results: Of the 100 videos analyzed, the most prevalent content (n=28) was videos that contained the actual surgical procedure of a cesarean delivery, and the most common source of cesarean delivery videos was physicians (n=30). Videos directly related to cesarean delivery, such as explanation of the surgery and the actual surgical procedure, were mainly uploaded by medical groups and scored higher than the videos indirectly related to cesarean delivery, which were mainly uploaded by nonmedical groups. In addition, videos directly related to cesarean delivery were more often uploaded earlier in time, with lower like ratios compared to indirect videos. Conclusions: YouTube is currently not an appropriate source for patients seeking information on cesarean delivery. %M 34328422 %R 10.2196/24994 %U https://www.jmir.org/2021/7/e24994 %U https://doi.org/10.2196/24994 %U http://www.ncbi.nlm.nih.gov/pubmed/34328422 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e24436 %T A Health Information Quality Assessment Tool for Korean Online Newspaper Articles: Development Study %A Lee,Naae %A Oh,Seung-Won %A Cho,Belong %A Myung,Seung-Kwon %A Hwang,Seung-Sik %A Yoon,Goo Hyeon %+ Department of Family Medicine, Healthcare System Gangnam Center, Seoul National University Hospital, 38-40FL Gangnam Finance Center 152, Teheran-ro, Gangnam-gu, Seoul, 06236, Republic of Korea, 82 2 2112 5500, sw.oh@snu.ac.kr %K assessment tools %K information seeking %K newspaper articles %K online health information %K quality assessment %D 2021 %7 29.7.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Concern regarding the reliability and accuracy of the health-related information provided by online newspaper articles has increased. Numerous criteria and items have been proposed and published regarding the quality assessment of online information, but there is no standard quality assessment tool available for online newspapers. Objective: This study aimed to develop the Health Information Quality Assessment Tool (HIQUAL) for online newspaper articles. Methods: We reviewed previous health information quality assessment tools and related studies and accordingly developed and customized new criteria. The interrater agreement for the new assessment tool was assessed for 3 newspaper articles on different subjects (colorectal cancer, obesity genetic testing, and hypertension diagnostic criteria) using the Fleiss κ and Gwet agreement coefficient. To compare the quality scores generated by each pair of tools, convergent validity was measured using the Kendall τ ranked correlation. Results: Overall, the HIQUAL for newspaper articles comprised 10 items across 5 domains: reliability, usefulness, understandability, sufficiency, and transparency. The interrater agreement for the article on colorectal cancer was in the moderate to substantial range (Fleiss κ=0.48, SE 0.11; Gwet agreement coefficient=0.74, SE 0.13), while for the article introducing obesity genetic testing it was in the substantial range, with values of 0.63 (SE 0.28) and 0.86 (SE 0.10) for the two measures, respectively. There was relatively low agreement for the article on hypertension diagnostic criteria at 0.20 (SE 0.10) and 0.75 (SE 0.13), respectively. Validity of the correlation assessed with the Kendall τ showed good correlation between tools (HIQUAL vs DISCERN=0.72, HIQUAL vs QUEST [Quality Evaluation Scoring Tool]=0.69). Conclusions: We developed a new assessment tool to evaluate the quality of health information in online newspaper articles, to help consumers discern accurate sources of health information. The HIQUAL can help increase the accuracy and quality of online health information in Korea. %M 34326038 %R 10.2196/24436 %U https://www.jmir.org/2021/7/e24436 %U https://doi.org/10.2196/24436 %U http://www.ncbi.nlm.nih.gov/pubmed/34326038 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 7 %N 7 %P e23876 %T Pre-exposure Prophylaxis (PrEP) Information on Instagram: Content Analysis %A Walsh-Buhi,Eric %A Houghton,Rebecca Fagen %A Lange,Claire %A Hockensmith,Ryli %A Ferrand,John %A Martinez,Lourdes %+ Department of Applied Health Science, Indiana University School of Public Health-Bloomington, 1025 E. 7th Street, Room 116, Bloomington, IN, 47405, United States, 1 812 855 4867, erwals@iu.edu %K digital health %K social media %K HIV %K pre-exposure prophylaxis %K Instagram %K content analysis %K communication %D 2021 %7 27.7.2021 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: There is still an HIV epidemic in the United States, which is a substantial issue for populations bearing a disproportionate burden of HIV infections. Daily oral pre-exposure prophylaxis (PrEP) has proven to be safe and effective in reducing HIV acquisition risk. However, studies document that PrEP awareness/usage is low. There is also limited understanding of social media platforms, such as Instagram, as PrEP information sources. Objective: Given the paucity of research on PrEP-related Instagram posts and popularity of this social media platform, the purpose of this research is to describe the source characteristics, image types, and textual contents of PrEP-related posts on Instagram. Methods: Using Crowdtangle Search, a public insights tool owned/operated by Facebook, we retrieved publicly accessible and English-language-only Instagram posts for the 12-month period preceding April 22, 2020, using the following terms: Truvada or “pre-exposure prophylaxis” or #truvada or #truvadaprep or #truvadawhore or #truvadaforprep. We employed a qualitative coding methodology to manually extract information from posts. Using a pretested codebook, we performed content analysis on 250 posts, examining message and source characteristics (ie, organization type [eg, government, news] and individual type [eg, physician]), including information about PrEP (eg, how it works, cost), and indicated users. Frequencies and percentages were calculated for all categorical variables. A Chi-square test was conducted to determine differences between source types on a variety of message characteristics. Results: Three-quarters of the posts (193/250, 77.2%) were posted by organizations. Of the 250 posts reviewed, approximately two-thirds (174/250, 69.6%) included a photograph, more than half (142/250, 56.8%) included an infographic, and approximately one-tenth (30/250, 12%) included a video. More than half defined PrEP (137/250, 54.8%), but fewer posts promoted PrEP use, explained how PrEP works, and included information on the effectiveness of PrEP or who can use it. The most commonly hashtagged populations among posts were men who have sex with men (MSM), but not necessarily bisexual men. Few posts contained race-/ethnicity-related hashtags (11/250, 4.4%). Fewer posts contained transgender-associated tags (eg, #transgirl; 5/250, 2%). No posts contained tags related to heterosexuals or injection drug users. We found statistical differences between source types (ie, individual versus organization). Specifically, posts from organizations more frequently contained information about who can use PrEP, whereas posts from individuals more frequently contained information describing adverse effects. Conclusions: This study is among the first to review Instagram for PrEP-related content, and it answers the National AIDS Strategy’s call for a clearer articulation of the science surrounding HIV risk/prevention through better understanding of the current public information environment. This study offers a snapshot of how PrEP is being discussed (and by whom) on one of the most popular social media platforms and provides a foundation for developing and implementing PrEP promotion interventions on Instagram. %M 34061759 %R 10.2196/23876 %U https://publichealth.jmir.org/2021/7/e23876 %U https://doi.org/10.2196/23876 %U http://www.ncbi.nlm.nih.gov/pubmed/34061759 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 9 %N 7 %P e30115 %T Predicting Writing Styles of Web-Based Materials for Children’s Health Education Using the Selection of Semantic Features: Machine Learning Approach %A Xie,Wenxiu %A Ji,Meng %A Liu,Yanmeng %A Hao,Tianyong %A Chow,Chi-Yin %+ School of Languages and Cultures, The University of Sydney, Room 635 A18, Brennan MacCallum Building, Sydney, 2006, Australia, 61 449858887, christine.ji@sydney.edu.au %K online health education %K health educational resource development %K machine learning %K health linguistics %D 2021 %7 22.7.2021 %9 Original Paper %J JMIR Med Inform %G English %X Background: Medical writing styles can have an impact on the understandability of health educational resources. Amid current web-based health information research, there is a dearth of research-based evidence that demonstrates what constitutes the best practice of the development of web-based health resources on children’s health promotion and education. Objective: Using authoritative and highly influential web-based children’s health educational resources from the Nemours Foundation, the largest not-for-profit organization promoting children’s health and well-being, we aimed to develop machine learning algorithms to discriminate and predict the writing styles of health educational resources on children versus adult health promotion using a variety of health educational resources aimed at the general public. Methods: The selection of natural language features as predicator variables of algorithms went through initial automatic feature selection using ridge classifier, support vector machine, extreme gradient boost tree, and recursive feature elimination followed by revision by education experts. We compared algorithms using the automatically selected (n=19) and linguistically enhanced (n=20) feature sets, using the initial feature set (n=115) as the baseline. Results: Using five-fold cross-validation, compared with the baseline (115 features), the Gaussian Naive Bayes model (20 features) achieved statistically higher mean sensitivity (P=.02; 95% CI −0.016 to 0.1929), mean specificity (P=.02; 95% CI −0.016 to 0.199), mean area under the receiver operating characteristic curve (P=.02; 95% CI −0.007 to 0.140), and mean macro F1 (P=.006; 95% CI 0.016-0.167). The statistically improved performance of the final model (20 features) is in contrast to the statistically insignificant changes between the original feature set (n=115) and the automatically selected features (n=19): mean sensitivity (P=.13; 95% CI −0.1699 to 0.0681), mean specificity (P=.10; 95% CI −0.1389 to 0.4017), mean area under the receiver operating characteristic curve (P=.008; 95% CI 0.0059-0.1126), and mean macro F1 (P=.98; 95% CI −0.0555 to 0.0548). This demonstrates the importance and effectiveness of combining automatic feature selection and expert-based linguistic revision to develop the most effective machine learning algorithms from high-dimensional data sets. Conclusions: We developed new evaluation tools for the discrimination and prediction of writing styles of web-based health resources for children’s health education and promotion among parents and caregivers of children. User-adaptive automatic assessment of web-based health content holds great promise for distant and remote health education among young readers. Our study leveraged the precision and adaptability of machine learning algorithms and insights from health linguistics to help advance this significant yet understudied area of research. %M 34292167 %R 10.2196/30115 %U https://medinform.jmir.org/2021/7/e30115 %U https://doi.org/10.2196/30115 %U http://www.ncbi.nlm.nih.gov/pubmed/34292167 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e28563 %T COVID-19 Information Dissemination Using the WeChat Communication Index: Retrospective Analysis Study %A Fan,Zina %A Yin,Wenqiang %A Zhang,Han %A Wang,Dandan %A Fan,Chengxin %A Chen,Zhongming %A Hu,Jinwei %A Ma,Dongping %A Guo,Hongwei %+ School of Management, Weifang Medical University, No. 7166 Baotong West Street, Weifang, Shandong, 261053, China, 86 05368462573, guohongww@126.com %K COVID-19 %K information dissemination %K People’s Daily %K Chinese news %K public health and communication %K media salience %K WeChat %D 2021 %7 16.7.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The COVID-19 outbreak has tremendously impacted the world. The number of confirmed cases has continued to increase, causing damage to society and the economy worldwide. The public pays close attention to information on the pandemic and learns about the disease through various media outlets. The dissemination of comprehensive and accurate COVID-19 information that the public needs helps to educate people so they can take preventive measures. Objective: This study aimed to examine the dissemination of COVID-19 information by analyzing the information released by the official WeChat account of the People’s Daily during the pandemic. The most-read COVID-19 information in China was summarized, and the factors that influence information dissemination were studied to understand the characteristics that affect its dissemination. Moreover, this was conducted in order to identify how to effectively disseminate COVID-19 information and to provide suggestions on how to manage public opinion and information governance during a pandemic. Methods: This was a retrospective study based on a WeChat official account. We collected all COVID-19–related information, starting with the first report about COVID-19 from the People’s Daily and ending with the last piece of information about lifting the first-level emergency response in 34 Chinese provinces. A descriptive analysis was then conducted on this information, as well as on Qingbo Big Data’s dissemination index. Multiple linear regression was utilized to study the factors that affected information dissemination based on various characteristics and the dissemination index. Results: From January 19 to May 2, 2020, the People’s Daily released 1984 pieces of information; 1621 were related to COVID-19, which mainly included headline news items, items with emotional content, and issues related to the pandemic’s development. By analyzing the dissemination index, seven information dissemination peaks were discerned. Among the three dimensions of COVID-19 information—media salience, content, and format—eight factors affected the spread of COVID-19 information. Conclusions: Different types of pandemic-related information have varying dissemination power. To effectively disseminate information and prevent the spread of COVID-19, we should identify the factors that affect this dissemination. We should then disseminate the types of information the public is most concerned about, use information to educate people to improve their health literacy, and improve public opinion and information governance. %M 34129515 %R 10.2196/28563 %U https://www.jmir.org/2021/7/e28563 %U https://doi.org/10.2196/28563 %U http://www.ncbi.nlm.nih.gov/pubmed/34129515 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 7 %P e27484 %T Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid %A Shojaie,Danielle %A Hoffman,Aubri S %A Amaku,Ruth %A Cabanillas,Maria E %A Sosa,Julie Ann %A Waguespack,Steven G %A Zafereo,Mark E %A Hu,Mimi I %A Grubbs,Elizabeth E %+ Department of Surgical Oncology, The University of Texas MD Anderson Cancer Center, 1400 Pressler Street, Unit 1484, Houston, TX, 77030, United States, 1 713 745 3715, eggrubbs@mdanderson.org %K patient decision aids %K decision support techniques %K oncology %K medullary thyroid cancer %K targeted therapy %K clinical trial %K mobile phone %D 2021 %7 16.7.2021 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 34269691 %R 10.2196/27484 %U https://formative.jmir.org/2021/7/e27484 %U https://doi.org/10.2196/27484 %U http://www.ncbi.nlm.nih.gov/pubmed/34269691 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 4 %N 2 %P e27802 %T Skin of Color Representation on Wikipedia: Cross-sectional Analysis %A Kim,William %A Wolfe,Sophia M %A Zagona-Prizio,Caterina %A Dellavalle,Robert P %+ University of Colorado School of Medicine, 13001 E 17th Pl, Aurora, CO, 80045, United States, 1 562 900 3006, william.kim@cuanschutz.edu %K skin of color %K Wikipedia %K dermatology %K skin photographs %K skin color %K dermatology %K eHealth %K representation %K SOC %K skin conditions %K photos %K images %K medical images %D 2021 %7 16.7.2021 %9 Original Paper %J JMIR Dermatol %G English %X Background: Wikipedia is one of the most popular websites and may be a go-to source of health and dermatology education for the general population. Prior research indicates poor skin of color (SOC) photo representation in printed dermatology textbooks and online medical websites, but there has been no such assessment performed to determine whether this discrepancy also exists for Wikipedia. Objective: The aim of this study was to investigate the number and quality of SOC photos included in Wikipedia’s skin disease pages and to explore the possible ramifications of these findings. Methods: Photos of skin diseases from Wikipedia’s “List of Skin Conditions” were assigned by three independent raters as SOC or non-SOC according to the Fitzpatrick system, and were given a quality rating (1-3) based on sharpness, size/resolution, and lighting/exposure. Results: We identified 421 skin disease Wikipedia pages and 949 images that met our inclusion criteria. Within these pages, 20.7% of images of skin diseases (196 of 949 images) were SOC and 79.3% (753 of 949 images) were non-SOC (P<.001). There was no difference in the average quality for SOC (2.05) and non-SOC (2.03) images (P=.81). However, the photo quality criteria utilized (sharpness, size/resolution, and lighting/exposure) did not capture all aspects of photo quality. Another limitation of this analysis is that the Fitzpatrick skin typing system is prone to subjectivity and was not originally intended to be utilized as a non-self SOC metric. Conclusions: There is SOC underrepresentation in the gross number of SOC images for dermatologic conditions on Wikipedia. Wikipedia pages should be updated to include more SOC photos to mend this divide to ameliorate access to accurate dermatology information for the general public and improve health equity within dermatology. %M 37632806 %R 10.2196/27802 %U https://derma.jmir.org/2021/2/e27802 %U https://doi.org/10.2196/27802 %U http://www.ncbi.nlm.nih.gov/pubmed/37632806 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e28527 %T Search Behavior Regarding Cancer Susceptibility Genes Using a Clinical Decision Support Tool for Gene-Specific Penetrance: Content Analysis %A Yin,Kanhua %A Zhou,Jingan %A Singh,Preeti %A Wang,Jin %A Braun,Danielle %A Hughes,Kevin S %+ Division of Surgical Oncology, Massachusetts General Hospital, 55 Fruit Street, Yawkey 7, Boston, MA, 02114, United States, 1 617 724 0048, kshughes@partners.org %K genetic testing %K pathogenic variant %K germline %K risk communication %K online health %K digital health %K cancer data %K genetics %K online tool %K bioinformatics %K web tool %K cancer %D 2021 %7 13.7.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Genetic testing for germline cancer susceptibility genes is widely available. The Ask2Me.org (All Syndromes Known to Man Evaluator) tool is a clinical decision support tool that provides evidence-based risk predictions for individuals with pathogenic variants in cancer susceptibility genes. Objective: The aim of this study was to understand the search behavior of the Ask2Me.org tool users, identify the patterns of queries entered, and discuss how to further improve the tool. Methods: We analyzed the Ask2Me.org user-generated queries collected between December 12, 2018, and October 8, 2019. The gene frequencies of the user-generated queries were compared with previously published panel testing data to assess the correspondence between usage and prevalence of pathogenic variants. The frequencies of prior cancer in the user-generated queries were compared with the most recent US population–based cancer incidence. Results: A total of 10,085 search queries were evaluated. The average age submitted in the queries was 48.8 (SD 16.5) years, and 84.1% (8478/10,085) of the submitted queries were for females. BRCA2 (1671/10,085, 16.6%), BRCA1 (1627/10,085, 16.1%), CHEK2 (994/10,085, 9.9%), ATM (662/10,085, 6.6%), and APC (492/10,085, 4.9%) were the top 5 genes searched by users. There was a strong linear correlation between genes queried by users and the frequency of pathogenic variants reported in published panel testing data (r=0.95, r2=0.90, P<.001). Over half of the queries (5343/10,085, 53.0%) included a prior personal history of cancer. The frequencies of prior cancers in the queries on females were strongly correlated with US cancer incidences (r=0.97, r2=0.95, P<.001), while the same correlation was weaker among the queries on males (r=0.69, r2=0.47, P=.02). Conclusions: The patients entered in the Ask2Me.org tool are a representative cohort of patients with pathogenic variants in cancer susceptibility genes in the United States. While a majority of the queries were on breast cancer susceptibility genes, users also queried susceptibility genes with lower prevalence, which may represent a transformation from single gene testing to multigene panel testing. Owing to these changing tides, more efforts are needed to improve evidence-based clinical decision support tools to better aid clinicians and their practice. %M 34255640 %R 10.2196/28527 %U https://cancer.jmir.org/2021/3/e28527 %U https://doi.org/10.2196/28527 %U http://www.ncbi.nlm.nih.gov/pubmed/34255640 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 7 %N 7 %P e29942 %T The Reliability and Quality of YouTube Videos as a Source of Public Health Information Regarding COVID-19 Vaccination: Cross-sectional Study %A Chan,Calvin %A Sounderajah,Viknesh %A Daniels,Elisabeth %A Acharya,Amish %A Clarke,Jonathan %A Yalamanchili,Seema %A Normahani,Pasha %A Markar,Sheraz %A Ashrafian,Hutan %A Darzi,Ara %+ Department of Surgery & Cancer, Imperial College London, 10th floor, Queen Elizabeth Queen Mother Building, St. Mary's Hospital, South Wharf Road, London, W2 1NY, United Kingdom, 44 02033126666, vs1108@imperial.ac.uk %K COVID-19 %K infodemiology %K public health %K quality %K reliability %K social media %K vaccination %K vaccine %K video %K web-based health information %K YouTube %D 2021 %7 8.7.2021 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Recent emergency authorization and rollout of COVID-19 vaccines by regulatory bodies has generated global attention. As the most popular video-sharing platform globally, YouTube is a potent medium for the dissemination of key public health information. Understanding the nature of available content regarding COVID-19 vaccination on this widely used platform is of substantial public health interest. Objective: This study aimed to evaluate the reliability and quality of information on COVID-19 vaccination in YouTube videos. Methods: In this cross-sectional study, the phrases “coronavirus vaccine” and “COVID-19 vaccine” were searched on the UK version of YouTube on December 10, 2020. The 200 most viewed videos of each search were extracted and screened for relevance and English language. Video content and characteristics were extracted and independently rated against Health on the Net Foundation Code of Conduct and DISCERN quality criteria for consumer health information by 2 authors. Results: Forty-eight videos, with a combined total view count of 30,100,561, were included in the analysis. Topics addressed comprised the following: vaccine science (n=18, 58%), vaccine trials (n=28, 58%), side effects (n=23, 48%), efficacy (n=17, 35%), and manufacturing (n=8, 17%). Ten (21%) videos encouraged continued public health measures. Only 2 (4.2%) videos made nonfactual claims. The content of 47 (98%) videos was scored to have low (n=27, 56%) or moderate (n=20, 42%) adherence to Health on the Net Foundation Code of Conduct principles. Median overall DISCERN score per channel type ranged from 40.3 (IQR 34.8-47.0) to 64.3 (IQR 58.5-66.3). Educational channels produced by both medical and nonmedical professionals achieved significantly higher DISCERN scores than those of other categories. The highest median DISCERN scores were achieved by educational videos produced by medical professionals (64.3, IQR 58.5-66.3) and the lowest median scores by independent users (18, IQR 18-20). Conclusions: The overall quality and reliability of information on COVID-19 vaccines on YouTube remains poor. Videos produced by educational channels, especially by medical professionals, were higher in quality and reliability than those produced by other sources, including health-related organizations. Collaboration between health-related organizations and established medical and educational YouTube content producers provides an opportunity for the dissemination of high-quality information on COVID-19 vaccination. Such collaboration holds potential as a rapidly implementable public health intervention aiming to engage a wide audience and increase public vaccination awareness and knowledge. %M 34081599 %R 10.2196/29942 %U https://publichealth.jmir.org/2021/7/e29942 %U https://doi.org/10.2196/29942 %U http://www.ncbi.nlm.nih.gov/pubmed/34081599 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e26427 %T Empowering Patients Living With Chronic Conditions Using Video as an Educational Tool: Scoping Review %A Navarro,Olga %A Escrivá,Marta %A Faubel,Raquel %A Traver,Vicente %+ Department of Physiotherapy, Universitat de València, Gascó Oliag 5, Valencia, 46010, Spain, 34 963983853, raquel.faubel@uv.es %K patients %K health education %K self-care %K video %K chronic disease %D 2021 %7 6.7.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Video is used daily for various purposes, such as leisure, culture, and even learning. Currently, video is a tool that is available to a large part of the population and is simple to use. This audio-visual format has many advantages such as its low cost, speed of dissemination, and possible interaction between users. For these reasons, it is a tool with high dissemination and educational potential, which could be used in the field of health for learning about and management of chronic diseases by adult patients. Objective: The following review determines whether the use of health educational videos by adult patients with chronic diseases is effective for their self-management according to the literature. Methods: An electronic literature search of the PubMed, CINAHL, and MEDLINE (via the EBSCOhost platform) databases up to April 2020 was conducted. The systematic scoping review followed the Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) methodology. Results: After reviewing 1427 articles, 12 were selected as the most consistent with the proposed inclusion criteria. After their review, it was found that the studies showed that video is effective as a tool for improving care related to chronic diseases. Conclusions: Video is effective in improving the care and quality of life for patients with chronic diseases, whether the initiative for using video came from their health care professionals or themselves. %M 34255671 %R 10.2196/26427 %U https://www.jmir.org/2021/7/e26427 %U https://doi.org/10.2196/26427 %U http://www.ncbi.nlm.nih.gov/pubmed/34255671 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e23670 %T The Influence of Online Health Information Seeking Before a Consultation on Anxiety, Satisfaction, and Information Recall, Mediated by Patient Participation: Field Study %A de Looper,Melanie %A van Weert,Julia C M %A Schouten,Barbara C %A Bolle,Sifra %A Belgers,Eric H J %A Eddes,Eric H %A Smets,Ellen M A %+ Amsterdam School of Communication Research, University of Amsterdam, Nieuwe Achtergracht 166, Amsterdam, 1018 WV, Netherlands, 31 630274301, m.delooper@uva.nl %K online health seeking %K patients %K aging %K patient participation %K memory %K anxiety %K patient reported outcomes %K consultation %K health communication %K cancer %D 2021 %7 5.7.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 34255657 %R 10.2196/23670 %U https://www.jmir.org/2021/7/e23670 %U https://doi.org/10.2196/23670 %U http://www.ncbi.nlm.nih.gov/pubmed/34255657 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e22650 %T Human Enough: A Qualitative Study of Client Experience With Internet-Based Access to Pre-exposure Prophylaxis %A Hughes,Shana D %A Koester,Kimberly A %A Engesaeth,Edvard %A Hawkins,Merissa V %A Grant,Robert M %+ Department of Medicine, University of California, San Francisco, 550 16th St, 3rd floor, San Francisco, CA, 94158, United States, 1 415 476 6288, shana.hughes@ucsf.edu %K telehealth %K internet %K HIV %K pre-exposure prophylaxis (PrEP) %K client/user experience %K qualitative %D 2021 %7 5.7.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 36256828 %R 10.2196/22650 %U https://www.jmir.org/2021/7/e22650/ %U https://doi.org/10.2196/22650 %U http://www.ncbi.nlm.nih.gov/pubmed/36256828 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 6 %P e26019 %T Calls to Action (Mobilizing Information) on Cancer in Online News: Content Analysis %A Zhang,Thomas Hongjie %A Tham,Jen Sern %+ Department of Communication, Faculty of Modern Languages and Communication, Universiti Putra Malaysia, Jalan Universiti 1, Serdang , Malaysia, 60 397698799, jstham@upm.edu.my %K mobilizing information %K online cancer news %K quantitative content analysis %K Malaysia %K online news %K cancer %K infodemiology %K media %K digital media %K digital health %K health information %K cancer health information %D 2021 %7 21.6.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The health belief model explains that individual intentions and motivation of health behaviors are mostly subject to external cues to action, such as from interpersonal communications and media consumptions. The concept of mobilizing information (MI) refers to a type of mediated information that could call individuals to carry out particular health actions. Different media channels, especially digital media outlets, play an essential role as a health educator to disseminate cancer health information and persuade and mobilize cancer prevention in the community. However, little is known about calls to action (or MI) in online cancer news, especially from Asian media outlets. Objective: This study aimed at analyzing cancer news articles that contain MI and their news components on the selected Malaysian English and Chinese newspapers with online versions. Methods: The Star Online and Sin Chew Online were selected for analysis because the two newspaper websites enjoy the highest circulation and readership in the English language and the Chinese language streams, respectively. Two bilingual coders searched the cancer news articles based on sampling keywords and then read and coded each news article accordingly. Five coding variables were conceptualized from previous studies (ie, cancer type, news source, news focus, cancer risk factors, and MI), and a good consistency using Cohen kappa was built between coders. Descriptive analysis was used to examine the frequency and percentage of each coding item; chi-square test (confidence level at 95%) was applied to analyze the differences between two newspaper websites, and the associations between variables and the presence of MI were examined through binary logistic regression. Results: Among 841 analyzed news articles, 69.6% (585/841) presented MI. News distributions were unbalanced throughout the year in both English and Chinese newspaper websites; some months occupied peaks (ie, February and October), but cancer issues and MI for cancer prevention received minimal attention in other months. The news articles from The Star Online and Sin Chew Online were significantly different in several news components, such as the MI present rates (χ2=9.25, P=.003), providing different types of MI (interactive MI: χ2=12.08, P=.001), interviewing different news sources (government agency: χ2=12.05, P=.001), concerning different news focus (primary cancer prevention: χ2=10.98, P=.001), and mentioning different cancer risks (lifestyle risks: χ2=7.43, P=.007). Binary logistic regression results reported that online cancer news articles were more likely to provide MI when interviewing nongovernmental organizations, focusing on topics related to primary cancer prevention, and highlighting lifestyle risks (odds ratio [OR] 2.77, 95% CI 1.89-4.05; OR 97.70, 95% CI 46.97-203.24; OR 186.28; 95% CI 44.83-773.96; P=.001, respectively). Conclusions: This study provided new understandings regarding MI in cancer news coverage. This could wake and trigger individuals’ preexisting attitudes and intentions on cancer prevention. Thus, health professionals, health journalists, and health campaign designers should concentrate on MI when distributing health information to the community. %M 34152283 %R 10.2196/26019 %U https://www.jmir.org/2021/6/e26019 %U https://doi.org/10.2196/26019 %U http://www.ncbi.nlm.nih.gov/pubmed/34152283 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 2 %P e23637 %T Development of a Digital Patient Education Tool for Patients With Cancer During the COVID-19 Pandemic %A Turkdogan,Sena %A Schnitman,Gabriel %A Wang,Tianci %A Gotlieb,Raphael %A How,Jeffrey %A Gotlieb,Walter Henri %+ Department of Physiology, McGill University, 3649 Promenade Sir-William-Osler, Montreal, QC, , Canada, 1 5144757717, tianci.wang@mail.mcgill.ca %K digital health %K eHealth %K patient education %K COVID-19 %D 2021 %7 21.6.2021 %9 Viewpoint %J JMIR Cancer %G English %X Background: Due to the COVID-19 pandemic, a large portion of oncology consultations have been conducted remotely. The maladaptation or compromise of care could negatively impact oncology patients and their disease management. Objective: We aimed to describe the development and implementation process of a web-based, animated patient education tool that supports oncology patients remotely in the context of fewer in-person interactions with health care providers. Methods: The platform created presents multilingual oncology care instructions. Animations concerning cancer care and mental health during the COVID-19 pandemic as well as immunotherapy and chemotherapy guides were the major areas of focus and represented 6 final produced video guides. Results: The videos were watched 1244 times in a period of 6 months. The most watched animation was the COVID-19 & Oncology guide (viewed 565 times), followed by the video concerning general treatment orientations (viewed 249 times) and the video titled “Chemotherapy” (viewed 205 times). Although viewers were equally distributed among the age groups, most were aged 25 to 34 years (342/1244, 27.5%) and were females (745/1244, 59.9%). Conclusions: The implementation of a patient education platform can be designed to prepare patients and their caregivers for their treatment and thus improve outcomes and satisfaction by using a methodical and collaborative approach. Multimedia tools allow a portion of a patient’s care to occur in a home setting, thereby freeing them from the need for hospital resources. %M 34101611 %R 10.2196/23637 %U https://cancer.jmir.org/2021/2/e23637 %U https://doi.org/10.2196/23637 %U http://www.ncbi.nlm.nih.gov/pubmed/34101611 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 2 %P e18830 %T Implementation of iPads to Increase Compliance With Delivery of New Parent Education in the Mother–Baby Unit: Retrospective Study %A Pavuluri,Haritha %A Grant,Alicia %A Hartman,Alexander %A Fowler,Lauren %A Hudson,Jennifer %A Springhart,Patrick %A Kennedy,Ann Blair %+ University of South Carolina School of Medicine Greenville, 607 Grove Road, Greenville, SC, 29605, United States, 1 864 455 8374, kenneda5@greenvillemed.sc.edu %K technology %K handheld computers %K workflow %K education %K newborn %K head trauma %D 2021 %7 15.6.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Abusive head trauma (AHT) is a serious health problem affecting more than 3000 infants annually in the United States. The American Academy of Pediatrics and the Centers for Disease Control and Prevention (CDC) recommend that health care providers counsel new parents about the dangers of AHT. Previous studies demonstrate that parental education is effective at reducing AHT events. South Carolina law requires hospitals to offer all new parents with the opportunity to watch an educational video about AHT. This mandate is addressed in different ways at the several delivery centers within a large South Carolina health care system with a range of viewing methods utilized, from DVD players to mobile workstations to personal devices. Frequent technical barriers and workflow inefficiencies resulted in low rates of compliance with this mandate at several campuses. To improve compliance of parent viewing of this educational video, the health care system standardized video viewing protocol across all campuses by implementing the use of iPads for parental education. Existing literature suggests that patient education can be improved in the hospital setting by utilizing tablet computers, but our literature search identified a gap in research around the education of parents and caregivers during hospitalization for childbirth. We used the implementation of an iPad-based parental education delivery protocol to evaluate whether tablet computers can improve compliance with delivering new parent education in the hospital setting. Objective: The objective of this study was to evaluate whether the standardized use of iPads to deliver education in the mother–baby unit resulted in improved rates of parents’ acceptance of the opportunity to view an educational video about AHT. Methods: We interviewed physicians and nurses to determine what previous protocols were in place to educate new parents before a standardized iPad-based protocol was implemented across 6 campuses of a large South Carolina health care system. A retrospective study was conducted by review of 5231 records from across the 6 campuses to determine the pre- and postintervention compliance rates of viewing the AHT educational video by parents in the mother–baby unit. Results: Compliance increased overall (P<.001) across sites from an average of 41.93% (SD 46.24) to 99.73% (SD 0.26) (φ=0.510). As much as 4 of 6 locations saw a significant increase in compliance rates after introducing the iPad intervention (P<.001). The remaining 2 locations that showed no significant difference (P>.05) had very high rates of preintervention compliance. Conclusions: Following the implementation of a standardized iPad-based protocol to deliver new parent education, there was a significant improvement in the percentage of new parents who viewed an educational video about AHT in the mother–baby unit. Based on these results, other health care providers should consider iPads to be a feasible and effective method for delivering hospital-based education to families in the mother–baby unit. %M 34128809 %R 10.2196/18830 %U https://pediatrics.jmir.org/2021/2/e18830 %U https://doi.org/10.2196/18830 %U http://www.ncbi.nlm.nih.gov/pubmed/34128809 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 6 %P e24896 %T A Caregiver Digital Intervention to Support Shared Decision Making in Child and Adolescent Mental Health Services: Development Process and Stakeholder Involvement Analysis %A Liverpool,Shaun %A Edbrooke-Childs,Julian %+ Faculty of Health, Social Care & Medicine, Edge Hill University, St Helens Rd, Ormskirk, United Kingdom, 44 169 557 5171, shaun.liverpool.14@ucl.ac.uk %K digital health intervention %K caregivers %K parents %K child mental health %D 2021 %7 15.6.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Parents and caregivers are generally recognized by literature and the law as key to child and adolescent mental health decisions. Digital interventions are increasingly being used to support care and treatment in child and adolescent mental health services (CAMHS). However, evidence of the design and development process is generally not made available. Objective: In light of calls for more transparency, this paper aims to describe the development of an evidence-based, theoretically informed digital decision support intervention for parents and caregivers of young people accessing CAMHS. Methods: The intervention was developed in line with the UK Medical Research Council framework for developing complex interventions. The process incorporated the steps for developing patient decision aids, as follows: assessing need, assessing feasibility; defining objectives; identifying the framework of decision support; and selecting the methods, designs, and dissemination approach. We synthesized theory, research, international guidelines, and input from relevant stakeholders using an iterative design approach. Results: The development steps resulted in Power Up for Parents, a decision support intervention, with five key features (ie, decisions, goals, journey, support, and resources). The intervention aims to encourage discussion, allow parents to ask questions during sessions or seek further information between sessions, and allow service providers to tailor the shared decision-making process to accommodate the needs of the parent and child. Conclusions: We confirmed that it is possible to use input from end users—integrated with theory and evidence—to create digital interventions to be used in CAMHS. Key lessons with implications for practice, policy, and implementation science, along with preliminary findings, are presented. International Registered Report Identifier (IRRID): RR2-10.2196/14571 %M 34128821 %R 10.2196/24896 %U https://formative.jmir.org/2021/6/e24896 %U https://doi.org/10.2196/24896 %U http://www.ncbi.nlm.nih.gov/pubmed/34128821 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 6 %P e26264 %T Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study %A Kim,Sue %A Aceti,Monica %A Baroutsou,Vasiliki %A Bürki,Nicole %A Caiata-Zufferey,Maria %A Cattaneo,Marco %A Chappuis,Pierre O %A Ciorba,Florina M %A Graffeo-Galbiati,Rossella %A Heinzelmann-Schwarz,Viola %A Jeong,Joon %A Jung,MiSook M %A Kim,Sung-Won %A Kim,Jisun %A Lim,Myong Cheol %A Ming,Chang %A Monnerat,Christian %A Park,Hyung Seok %A Park,Sang Hyung %A Pedrazzani,Carla A %A Rabaglio,Manuela %A Ryu,Jai Min %A Saccilotto,Ramon %A Wieser,Simon %A Zürrer-Härdi,Ursina %A Katapodi,Maria C %+ Department of Clinical Research, University of Basel, Missionstrasse 64, Basel, 4055, Switzerland, 41 61 207 0430, maria.katapodi@unibas.ch %K HBOC %K proportion of informed at-risk relatives %K coping %K communicating %K decisional conflict %K cultural and linguistic adaptation %K implementation %K RE-AIM %K mobile phone %D 2021 %7 11.6.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: In hereditary breast and ovarian cancer (HBOC), family communication of genetic test results is essential for cascade genetic screening, that is, identifying and testing blood relatives of known mutation carriers to determine whether they also carry the pathogenic variant, and to propose preventive and clinical management options. However, up to 50% of blood relatives are unaware of relevant genetic information, suggesting that potential benefits of genetic testing are not communicated effectively within family networks. Technology can facilitate communication and genetic education within HBOC families. Objective: The aims of this study are to develop the K-CASCADE (Korean–Cancer Predisposition Cascade Genetic Testing) cohort in Korea by expanding an infrastructure developed by the CASCADE (Cancer Predisposition Cascade Genetic Testing) Consortium in Switzerland; develop a digital health intervention to support the communication of cancer predisposition for Swiss and Korean HBOC families, based on linguistic and cultural adaptation of the Family Gene Toolkit; evaluate its efficacy on primary (family communication of genetic results and cascade testing) and secondary (psychological distress, genetic literacy, active coping, and decision making) outcomes; and explore its translatability using the reach, effectiveness, adoption, implementation, and maintenance framework. Methods: The digital health intervention will be available in French, German, Italian, Korean, and English and can be accessed via the web, mobile phone, or tablet (ie, device-agnostic). K-CASCADE cohort of Korean HBOC mutation carriers and relatives will be based on the CASCADE infrastructure. Narrative data collected through individual interviews or mini focus groups from 20 to 24 HBOC family members per linguistic region and 6-10 health care providers involved in genetic services will identify the local cultures and context, and inform the content of the tailored messages. The efficacy of the digital health intervention against a comparison website will be assessed in a randomized trial with 104 HBOC mutation carriers (52 in each study arm). The translatability of the digital health intervention will be assessed using survey data collected from HBOC families and health care providers. Results: Funding was received in October 2019. It is projected that data collection will be completed by January 2023 and results will be published in fall 2023. Conclusions: This study addresses the continuum of translational research, from developing an international research infrastructure and adapting an existing digital health intervention to testing its efficacy in a randomized controlled trial and exploring its translatability using an established framework. Adapting existing interventions, rather than developing new ones, takes advantage of previous valid experiences without duplicating efforts. Culturally sensitive web-based interventions that enhance family communication and understanding of genetic cancer risk are timely. This collaboration creates a research infrastructure between Switzerland and Korea that can be scaled up to cover other hereditary cancer syndromes. Trial Registration: ClinicalTrials.gov NCT04214210; https://clinicaltrials.gov/ct2/show/NCT04214210 and CRiS KCT0005643; https://cris.nih.go.kr/cris/ International Registered Report Identifier (IRRID): PRR1-10.2196/26264 %M 34114954 %R 10.2196/26264 %U https://www.researchprotocols.org/2021/6/e26264 %U https://doi.org/10.2196/26264 %U http://www.ncbi.nlm.nih.gov/pubmed/34114954 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 6 %P e23884 %T Perceptions of Endocrine Therapy in African-American Breast Cancer Survivors: Mixed Methods Study %A Donevant,Sara %A Heiney,Sue P %A Wineglass,Cassandra %A Schooley,Benjamin %A Singh,Akanksha %A Sheng,Jingxi %+ College of Nursing, University of South Carolina, 1601 Greene Street, Columbia, SC, 29208, United States, 1 803 777 7672, Donevant@mailbox.sc.edu %K mHealth %K breast cancer survivors %K medication adherence %K cultural considerations %K mobile health applications %D 2021 %7 11.6.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Although the incidence of breast cancer is lower in African-American women than in White women, African-American women have a decreased survival rate. The difference in survival rate may stem from poor endocrine therapy adherence, which increases breast cancer recurrence. Therefore, accessible and culturally sensitive interventions to increase endocrine therapy adherence are necessary. Objective: The purpose of this concurrent convergent mixed methods study was to provide further data to guide the development of the proposed culturally sensitive mHealth app, STORY+ for African-American women with breast cancer. Methods: We recruited 20 African-American women diagnosed with estrogen-positive breast cancer and currently prescribed endocrine therapy. We used a concurrent convergent data collection method to (1) assess the use of smartphones and computers related to health care and (2) identify foundational aspects to support endocrine therapy adherence for incorporation in a mobile health app. Results: Overwhelmingly, the participants preferred using smartphones to using computers for health care. Communicating with health care providers and pharmacies was the most frequent health care use of smartphones, followed by exercise tracking, and accessing the patient portal. We identified 4 aspects of adherence to endocrine therapy and smartphone use for incorporation in app development. The factors that emerged from the integrated qualitative and quantitative data were (1) willingness to use, (2) side effects, (3) social connection, and (4) beliefs about endocrine therapy. Conclusions: Further research is needed to develop a culturally sensitive app for African-American women with breast cancer to improve adherence to endocrine therapy. Our work strongly suggests that this population would use the app to connect with other African-American breast cancer survivors and manage endocrine therapy. %M 34114955 %R 10.2196/23884 %U https://formative.jmir.org/2021/6/e23884 %U https://doi.org/10.2196/23884 %U http://www.ncbi.nlm.nih.gov/pubmed/34114955 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 7 %N 2 %P e22745 %T Shared Decision-Making With a Virtual Patient in Medical Education: Mixed Methods Evaluation Study %A Jacklin,Simon %A Maskrey,Neal %A Chapman,Stephen %+ School of Pharmacy and Bioengineering, Keele University, 1.24, Hornbeam Building, Keele, ST55BG, United Kingdom, 44 01782 734792, s.jacklin@keele.ac.uk %K shared decision making %K virtual patient %K communication %K medical education %D 2021 %7 10.6.2021 %9 Original Paper %J JMIR Med Educ %G English %X Background: Shared decision-making (SDM) is a process in which clinicians and patients work together to select tests, treatments, management, or support packages based on clinical evidence and the patient’s informed preferences. Similar to any skill, SDM requires practice to improve. Virtual patients (VPs) are simulations that allow one to practice a variety of clinical skills, including communication. VPs can be used to help professionals and students practice communication skills required to engage in SDM; however, this specific focus has not received much attention within the literature. A multiple-choice VP was developed to allow students the opportunity to practice SDM. To interact with the VP, users chose what they wanted to say to the VP by choosing from multiple predefined options, rather than typing in what they wanted to say. Objective: This study aims to evaluate a VP workshop for medical students aimed at developing the communication skills required for SDM. Methods: Preintervention and postintervention questionnaires were administered, followed by semistructured interviews. The questionnaires provided cohort-level data on the participants’ views of the VP and helped to inform the interview guide; the interviews were used to explore some of the data from the questionnaire in more depth, including the participants’ experience of using the VP. Results: The interviews and questionnaires suggested that the VP was enjoyable and easy to use. When the participants were asked to rank their priorities in both pre- and post-VP consultations, there was a change in the rank position of respecting patient choices, with the median rank changing from second to first. Owing to the small sample size, this was not analyzed for statistical significance. The VP allowed the participants to explore a consultation in a way that they could not with simulated or real patients, which may be part of the reason that the VP was suggested as a useful intervention for bridging from the early, theory-focused years of the curriculum to the more patient-focused ones later. Conclusions: The VP was well accepted by the participants. The multiple-choice system of interaction was reported to be both useful and restrictive. Future work should look at further developing the mode of interaction and explore whether the VP results in any changes in observed behavior or practice. %M 34110299 %R 10.2196/22745 %U https://mededu.jmir.org/2021/2/e22745 %U https://doi.org/10.2196/22745 %U http://www.ncbi.nlm.nih.gov/pubmed/34110299 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 6 %P e23839 %T Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial %A Jones,Tarsha %A Guzman,Ashlee %A Silverman,Thomas %A Freeman,Katherine %A Kukafka,Rita %A Crew,Katherine %+ Florida Atlantic University, 777 Glades Road, Boca Raton, FL, 33431, United States, 1 561 297 4975, Jonest@health.fau.edu %K breast cancer %K chemoprevention %K qualitative %K decision support %K cancer %K estrogen receptor %K web-based %K cancer risk %D 2021 %7 8.6.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention. Objective: This study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks—a DA designed to promote the uptake of breast cancer chemoprevention—and to understand their information needs. Methods: We completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes. Results: The mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5% (1/21) Asian, 24% (5/21) Black or African American, and 71% (15/21) White; 10% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100%). Most women (13/21, 62%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention. Some women (9/21, 43%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel–style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs. Conclusions: This qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement. %M 34100769 %R 10.2196/23839 %U https://www.jmir.org/2021/6/e23839 %U https://doi.org/10.2196/23839 %U http://www.ncbi.nlm.nih.gov/pubmed/34100769 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 6 %P e25236 %T Personal Health Information Management Among Older Adults: Scoping Review %A Kolotylo-Kulkarni,Malgorzata %A Seale,Deborah E %A LeRouge,Cynthia M %+ Department of Information Management & Business Analytics, College of Business & Public Administration, Drake University, 2507 University Ave, Des Moines, IA, 50311, United States, 1 5152712007, malgorzata.kolotylo-kulkarni@drake.edu %K personal health information management %K health information management %K scoping review %K information management %K consumer health informatics %K medical informatics %K patient participation %D 2021 %7 7.6.2021 %9 Review %J J Med Internet Res %G English %X Background: Older adults face growing health care needs and could potentially benefit from personal health information management (PHIM) and PHIM technology. To ensure effective PHIM and to provide supportive tools, it is crucial to investigate the needs, challenges, processes, and tools used by this subpopulation. The literature on PHIM by older adults, however, remains scattered and has not provided a clear picture of what we know about the elements that play a role in older adults’ PHIM. Objective: The goal of our review was to provide a comprehensive overview of extant knowledge on PHIM by older adults, establish the status quo of research on this topic, and identify research gaps. Methods: We carried out a scoping review of the literature from 1998 to 2020, which followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) framework. First, we executed a broad and structured search. We then carried out a qualitative analysis of papers pertinent to the topic taking into consideration the five elements of the patient work system as follows: (1) personal-level factors, (2) PHIM tasks, (3) tools used, (4) physical settings of PHIM activities, and (5) socio-organizational aspects. Results: The review included 22 studies. Consolidated empirical evidence was related to all elements of the patient work system. Multiple personal factors affected PHIM. Various types of personal health information were managed (clinical, patient-generated, and general) and tools were used (electronic, paper-based, and others). Older adults’ PHIM was intertwined with their surroundings, and various individuals participated. The largest body of evidence concerned personal factors, while findings regarding the physical environment of PHIM were scarce. Most research has thus far examined older adults as a single group, and scant attention has been paid to age subgroups. Conclusions: Opportunities for further PHIM studies remain across all elements of the patient work system in terms of empirical, design science, or review work. %M 34096872 %R 10.2196/25236 %U https://www.jmir.org/2021/6/e25236 %U https://doi.org/10.2196/25236 %U http://www.ncbi.nlm.nih.gov/pubmed/34096872 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 6 %P e25083 %T Patients’ and Providers’ Needs and Preferences When Considering Fertility Preservation Before Cancer Treatment: Decision-Making Needs Assessment %A Hoffman,Aubri %A Crocker,Laura %A Mathur,Aakrati %A Holman,Deborah %A Weston,June %A Campbell,Sukhkamal %A Housten,Ashley %A Bradford,Andrea %A Agrawala,Shilpi %A Woodard,Terri L %+ Department of Gynecological Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, 1155 Pressler Street, Unit 1362, Houston, TX, 77030-4009, United States, 1 713 745 7591, tlwoodard@mdanderson.org %K cancer %K decision support techniques %K fertility preservation %K oncofertility %K oncology %K needs assessment %K patient decision aids %K patient needs %K shared decision making %D 2021 %7 7.6.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: As cancer treatments continue to improve, it is increasingly important that women of reproductive age have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer; however, as few as 12% of women recall discussing fertility preservation. The long-term goal of this program is to develop an interactive web-based patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decision-making needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions. Objective: This study aims to assess providers’ and survivors’ fertility preservation decision-making experiences, unmet needs, and initial design preferences to inform the development of a web-based patient decision aid. Methods: Semistructured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed the transcripts using NVivo (QSR International). A stakeholder advisory panel guided the study and interpretation of results. Results: A total of 51 participants participated in 46 interviews (18 providers and 28 survivors) and 1 ad hoc focus group (7 survivors). The primary themes included the importance of fertility decisions for survivorship, the existence of significant but potentially modifiable barriers to optimal decision making, and a strong support for developing a carefully designed patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation. Conclusions: Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care and a priority for many survivors’ optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate toward an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women’s clinical characteristics and their information-seeking and deliberative styles. %M 34096871 %R 10.2196/25083 %U https://formative.jmir.org/2021/6/e25083 %U https://doi.org/10.2196/25083 %U http://www.ncbi.nlm.nih.gov/pubmed/34096871 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 6 %P e22970 %T Using a Mobile App–Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data %A Ormel,Ilja %A Onu,Charles C %A Magalhaes,Mona %A Tang,Terence %A Hughes,John B %A Law,Susan %+ Department of Family Medicine, McGill University, 5858 Côte-des-Neiges Rd, Montréal, QC, H2T 1W1, Canada, 1 (514) 345 3511 ext 5060, ilja.ormel@mail.mcgill.ca %K qualitative research %K illness narratives %K experiential information %K breast cancer %K surgery %K tailored information %K recommender system %K patient information and communication %K mobile app %K mobile phone %D 2021 %7 2.6.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Women diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women’s capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others’ experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs—offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area. Objective: This study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network. Methods: In a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women’s experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women’s personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey. Results: The secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool. Conclusions: Developing reliable, evidence-based tools and apps that are based on diverse collections of people’s experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer. %M 34076582 %R 10.2196/22970 %U https://formative.jmir.org/2021/6/e22970 %U https://doi.org/10.2196/22970 %U http://www.ncbi.nlm.nih.gov/pubmed/34076582 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 6 %P e17858 %T Adequate Management of Phosphorus in Patients Undergoing Hemodialysis Using a Dietary Smartphone App: Prospective Pilot Study %A Fakih El Khoury,Cosette %A Crutzen,Rik %A Schols,Jos MGA %A Halfens,Ruud JG %A Karavetian,Mirey %+ Department of Health Sciences, Zayed University, Academic city PO Box 19282, Dubai, United Arab Emirates, 971 562446865, kmirey@gmail.com %K renal diet %K mhealth %K dietary app %D 2021 %7 1.6.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: The renal diet is complex and requires alterations of the diet and careful monitoring of various nutrients. Elevated serum phosphorus is common among patients undergoing hemodialysis, and it is associated with many complications. Smartphone technology could be used to support both dietitians and patients by providing a source of accessible and reliable information. Objective: The aim of this pilot is to assess the potential efficacy of an intervention using the educational and self-monitoring mobile app KELA.AE on the phosphorous management in hemodialysis patients. Results will be used to improve both the app and a planned, rigorous large-scale trial intended to assess app efficacy. Methods: This is a prospective pilot study performed at the hemodialysis unit of Al Qassimi Hospital (Emirate of Sharjah, United Arab Emirates). All patients were assessed for eligibility and, based on inclusion criteria, considered for enrollment. Participants met with a dietitian once a week and used the mobile app regularly for 2 weeks. Outcomes (knowledge, self-reported nonadherence, dietary intake, anthropometry, and biochemical data) were measured. This pilot is reported as per guidelines for nonrandomized pilot and feasibility studies and in line with the CONSORT (Consolidated Standards of Reporting Trials) 2010 checklist for reporting pilot or feasibility trials. Results: Of 26 subjects, 23 successfully completed the pilot. Patient dietary knowledge about phosphorous management improved from 51.4% (SD 13.9) to 68.1% (SD 13.3) after intervention with a large effect size (d=1.22, 95% CI 0.59 to 1.85). Dietary protein intake increased from a mean of 0.9 g/kg (SD 0.3) per day to a mean of 1.3 g/kg (SD 0.5) per day with a large effect size (d=1.07, 95% CI 0.45 to 1.69). Phosphorus to protein ratio dropped from a mean of 18.4 mg/g protein to 13.5 mg/g protein with a large effect size (d=0.83, 95% CI 0.22 to 1.43). There was no evidence of change in phosphorous intake, self-reported nonadherence, and serum phosphorus. Conclusions: The findings of this prospective pilot reveal the potential efficacy of a smartphone app as a supportive nutrition education tool for phosphorus management in patients undergoing hemodialysis. This pilot study showed that the KELA.AE app has the potential to improve knowledge and dietary choices. A rigorous randomized controlled trial should be performed to evaluate the efficacy, assessing app use of a long-term intervention. %M 34061034 %R 10.2196/17858 %U https://formative.jmir.org/2021/6/e17858 %U https://doi.org/10.2196/17858 %U http://www.ncbi.nlm.nih.gov/pubmed/34061034 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 6 %P e27668 %T STAR Duodecim eHealth Tool to Recognize Chronic Disease Risk Factors and Change Unhealthy Lifestyle Choices Among the Long-Term Unemployed: Protocol for a Mixed Methods Validation Study %A Kuhlberg,Henna %A Kujala,Sari %A Hörhammer,Iiris %A Koskela,Tuomas %+ Faculty of Medicine and Health Technology, Tampere University, Arvo Ylpön katu 34, Tampere, 33520, Finland, 358 504488439, henna.kuhlberg@gmail.com %K eHealth %K risk assessment %K long-term unemployed %K expected age of death %K online intervention %K risk factors %K chronic illnesses %K primary prevention %K online health check %K long-term %K multimorbidity %K health care services %K examination %K evaluation %K lifestyle %D 2021 %7 1.6.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Lifestyle choices and socioeconomic status have a significant impact on the expected onset of diseases, age of death, and risk factors concerning long-term illnesses and morbidity. STAR is an online health examination tool, which gives users a report that includes an evaluation of their life expectancy and an estimated risk for developing common long-term illnesses based on questions about health, characteristics, lifestyle, and quality of life. Objective: The goals of this study are to (1) review the capacity of STAR to recognize morbidity risks in comparison to a traditional nurse-led health examination and patient-reported health challenges; (2) evaluate the user experience and usability of STAR; and (3) assess the potential impact of STAR on the health confidence and motivation of patients to make healthier lifestyle choices. Methods: This mixed methods validation study will consist of a quantitative part (questionnaires) and a qualitative part (phone interviews and open-ended questions from the questionnaires). The participants will include 100 long-term unemployed individuals attending a health check for the unemployed. The participants will be recruited from three Finnish public health centers in Espoo, Hämeenlinna, and Tampere. At the health centers, the participants will use STAR and attend a nurse’s health check. Surveys with multiple-choice and open-ended questions will be collected from the participants, the nurse, and a study assistant. The questionnaires include questions about the participant’s background and health challenges from the patient and nurse points of view, as well as questions about how well the health challenges matched the STAR report. The questionnaires also gather data about user experience, health confidence, and usability of STAR. A study assistant will fill out an observer’s form containing questions about use time and possible problems encountered while using STAR. A sample of the unemployed participants will be interviewed by telephone subsequently. For the quantitative data, descriptive statistics and a reliability analysis will be performed, and mean sum scores will be computed for the study variables. Thematic analysis of the qualitative data will be performed. Results: This study was approved by the Ethics Committee of the Expert Responsibility Area of Tampere University Hospital in June 2020 (ETL Code R20067). Data collection will begin in June 2021 and will take approximately 3-6 months. Conclusions: Online health examinations can improve the effectiveness of primary prevention in health care by supporting efficient evidence-based morbidity risk estimation and motivating patients to change unhealthy behaviors. A multimethod approach is used to allow for assessment of the tool’s usefulness from the points of view of both professionals and patients. This study will further provide a rich understanding of how the tool can be used as part of routine health checks, and how and why the tool may or may not motivate users for making healthier lifestyle choices. International Registered Report Identifier (IRRID): PRR1-10.2196/27668 %M 34061041 %R 10.2196/27668 %U https://www.researchprotocols.org/2021/6/e27668 %U https://doi.org/10.2196/27668 %U http://www.ncbi.nlm.nih.gov/pubmed/34061041 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 7 %N 5 %P e24199 %T Social Media Content of Idiopathic Pulmonary Fibrosis Groups and Pages on Facebook: Cross-sectional Analysis %A Kochan,Andrew %A Ong,Shaun %A Guler,Sabina %A Johannson,Kerri A %A Ryerson,Christopher J %A Goobie,Gillian C %+ Division of Cardiology, Department of Medicine, University of British Columbia, 9th Floor Gordon and Leslie and Diamond Health Care Centre, 2775 Laurel Street, Vancouver, BC, V5Z 1M9, Canada, 1 (604) 875 4111 ext 69821, andrew.kochan@alumni.ubc.ca %K interstitial lung disease %K idiopathic pulmonary fibrosis %K patient education %K social media %K internet %D 2021 %7 31.5.2021 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Patients use Facebook as a resource for medical information. We analyzed posts on idiopathic pulmonary fibrosis (IPF)-related Facebook groups and pages for the presence of guideline content, user engagement, and usefulness. Objective: The objective of this study was to describe and analyze posts from Facebook groups and pages that primarily focus on IPF-related content. Methods: Cross-sectional analysis was performed on a single date, identifying Facebook groups and pages resulting from separately searching “IPF” and “idiopathic pulmonary fibrosis.” For inclusion, groups and pages needed to meet either search term and be in English, publicly available, and relevant to IPF. Every 10th post was assessed for general characteristics, source, focus, and user engagement metrics. Posts were analyzed for presence of IPF guideline content, useful scientific information (eg, scientific publications), useful support information (eg, information about support groups), and potentially harmful information. Results: Eligibility criteria were met by 12 groups and 27 pages, leading to analysis of 523 posts. Of these, 42% contained guideline content, 24% provided useful support, 20% provided useful scientific information, and 5% contained potentially harmful information. The most common post source was nonmedical users (85%). Posts most frequently focused on IPF-related news (29%). Posts containing any guideline content had fewer likes or comments and a higher likelihood of containing potentially harmful content. Posts containing useful supportive information had more likes, shares, and comments. Conclusions: Facebook contains useful information about IPF, but posts with misinformation and less guideline content have higher user engagement, making them more visible. Identifying ways to help patients with IPF discriminate between useful and harmful information on Facebook and other social media platforms is an important task for health care professionals. %M 34057425 %R 10.2196/24199 %U https://publichealth.jmir.org/2021/5/e24199 %U https://doi.org/10.2196/24199 %U http://www.ncbi.nlm.nih.gov/pubmed/34057425 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 5 %P e25343 %T Reactance to Social Authority in Entertainment-Education Media: Protocol for a Web-Based Randomized Controlled Trial %A Vandormael,Alain %A Adam,Maya %A Hachaturyan,Violetta %A Greuel,Merlin %A Favaretti,Caterina %A Gates,Jennifer %A Baernighausen,Till %+ Heidelberg Institute of Global Health, Heidelberg University, Im Neuenheimer Feld 130/3, Heidelberg, 69120, Germany, 49 6221 565344, alain.vandormael@uni-heidelberg.de %K entertainment-education %K sugar reduction %K reactance %K animated video %K list experiment %D 2021 %7 28.5.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Entertainment-education media can be an effective strategy for influencing health behaviors. To improve entertainment-education effectiveness, we seek to investigate whether the social authority of a person delivering a health message arouses the motivation to reject that message—a phenomenon known as reactance. Objective: In this study, using a short animated video, we aim to measure reactance to a sugar reduction message narrated by a child (low social authority), the child’s mother (equivalent social authority to the target audience), and a family physician (high social authority). The aims of the study are to determine the effect of the narrator’s perceived social authority on reactance to the sugar reduction message, establish the effectiveness of the video in improving behavioral intent to reduce the intake of added sugars, and quantify participants’ interest in watching the entertainment-education intervention video. Methods: This is a parallel group, randomized controlled trial comparing an intervention video narrated by a low, equivalent, or high social authority against a content placebo video and a placebo video. Using a web-based recruitment platform, we plan to enroll 4000 participants aged between 18 and 59 years who speak English and reside in the United Kingdom. The primary end points will include measures of the antecedents to reactance (proneness to reactance and threat level of the message), its components (anger and negative cognition), and attitudinal and behavioral intent toward sugar intake. We will measure behavioral intent using list experiments. Participants randomized to the placebo videos will be given a choice to watch one of the sugar-intervention videos at the end of the study to assess participant engagement with the entertainment-education video. Results: The study was approved by the ethics committee of Heidelberg University on March 18, 2020 (S-088/2020). Participant recruitment and data collection were completed in December 2020. The data analysis was completed in April 2021, and the final results are planned to be published by August 2021. Conclusions: In this trial, we will use several randomization procedures, list experimentation methods, and new web-based technologies to investigate the effect of perceived social authority on reactance to a message about reducing sugar intake. Our results will inform the design of future entertainment-education videos for public health promotion needs. Trial Registration: German Clinical Trials Registry DRKS00022340: https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00022340. International Registered Report Identifier (IRRID): DERR1-10.2196/25343 %M 34047702 %R 10.2196/25343 %U https://www.researchprotocols.org/2021/5/e25343 %U https://doi.org/10.2196/25343 %U http://www.ncbi.nlm.nih.gov/pubmed/34047702 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 5 %P e27650 %T Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial %A Hood,Anna M %A Strong,Heather %A Nwankwo,Cara %A Johnson,Yolanda %A Peugh,James %A Mara,Constance A %A Shook,Lisa M %A Brinkman,William B %A Real,Francis J %A Klein,Melissa D %A Hackworth,Rogelle %A Badawy,Sherif M %A Thompson,Alexis A %A Raphael,Jean L %A Yates,Amber M %A Smith-Whitley,Kim %A King,Allison A %A Calhoun,Cecelia %A Creary,Susan E %A Piccone,Connie M %A Hildenbrand,Aimee K %A Reader,Steven K %A Neumayr,Lynne %A Meier,Emily R %A Sobota,Amy E %A Rana,Sohail %A Britto,Maria %A Saving,Kay L %A Treadwell,Marsha %A Quinn,Charles T %A Ware,Russell E %A Crosby,Lori E %+ Developmental Neurosciences, Institute of Child Health, University College London, 30 Guilford Street, London, WC1N 1EH, United Kingdom, 44 02079052744, a.hood@ucl.ac.uk %K dissemination %K decisional uncertainty %K quality of care %K child health %K NHLBI guidelines %D 2021 %7 21.5.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/β0 thalassemia) aged as early as 9 months. However, the uptake remains suboptimal, likely because caregivers lack information about hydroxyurea and have concerns about its safety and potential long-term side effects. Moreover, clinicians do not routinely receive training or tools, especially those that provide medical evidence and consider caregivers’ preferences and values, to facilitate a shared discussion with caregivers. Objective: The aim of this study is to understand how best to help parents of young children with sickle cell disease and their clinicians have a shared discussion about hydroxyurea (one that considers medical evidence and parent values and preferences). Methods: We designed our study to compare the effectiveness of two methods for disseminating hydroxyurea guidelines to facilitate SDM: a clinician pocket guide (ie, usual care) and a clinician hydroxyurea SDM toolkit (H-SDM toolkit). Our primary outcomes are caregiver reports of decisional uncertainty and knowledge of hydroxyurea. The study also assesses the number of children (aged 0-5 years) who were offered and prescribed hydroxyurea and the resultant health outcomes. Results: The Ethics Committee of the Cincinnati Children’s Hospital Medical Center approved this study in November 2017. As of February 2021, we have enrolled 120 caregiver participants. Conclusions: The long-term objective of this study is to improve the quality of care for children with SCA. Using multicomponent dissemination methods developed in partnership with key stakeholders and designed to address barriers to high-quality care, caregivers of patients with SCA can make informed and shared decisions about their health. Trial Registration: ClinicalTrials.gov NCT03442114; https://clinicaltrials.gov/ct2/show/NCT03442114 International Registered Report Identifier (IRRID): DERR1-10.2196/27650 %M 34018965 %R 10.2196/27650 %U https://www.researchprotocols.org/2021/5/e27650 %U https://doi.org/10.2196/27650 %U http://www.ncbi.nlm.nih.gov/pubmed/34018965 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 2 %P e25357 %T The Value of Web-Based Patient Education Materials on Transarterial Chemoembolization: Systematic Review %A Sideris,Georgios Antonios %A Vyllioti,Aikaterini-Themis %A Dima,Danai %A Chill,Michael %A Njuguna,Njogu %+ Department of Radiology, Baystate Medical Center, University of Massachusetts Medical School, 759 Chestnut Street, Springfield, MA, 01199, United States, 1 4133029024, siderismd@gmail.com %K transarterial chemoembolization %K interventional radiology %K interventional oncology %K liver cancer %K hepatocellular carcinoma %K internet %K patient education %K systematic review %D 2021 %7 7.5.2021 %9 Review %J JMIR Cancer %G English %X Background: Thousands of web searches are performed related to transarterial chemoembolization (TACE), given its palliative role in the treatment of liver cancer. Objective: This study aims to assess the reliability, quality, completeness, readability, understandability, and actionability of websites that provide information on TACE for patients. Methods: The five most popular keywords pertaining to TACE were searched on Google, Yahoo, and Bing. General website characteristics and the presence of Health On the Net Foundation code certification were documented. Website assessment was performed using the following scores: DISCERN, Journal of the American Medical Association, Flesch-Kincaid Grade Level, Flesch Reading Ease Score, and the Patient Education Materials Assessment Tool. A novel TACE content score was generated to evaluate website completeness. Results: The search yielded 3750 websites. In total, 81 website entities belonging to 78 website domains met the inclusion criteria. A medical disclaimer was not provided on 28% (22/78) of website domains. Health On the Net code certification was present on 12% (9/78) of website domains. Authorship was absent on 88% (71/81) of websites, and sources were absent on 83% (67/81) of websites. The date of publication or of the last update was not listed on 58% (47/81) of websites. The median DISCERN score was 47.0 (IQR 40.5-54.0). The median TACE content score was 35 (IQR 27-43). The median readability grade level was in the 11th grade. Overall, 61% (49/81) and 16% (13/81) of websites were deemed understandable and actionable, respectively. Not-for-profit websites fared significantly better on the Journal of the American Medical Association, DISCERN, and TACE content scores. Conclusions: The content referring to TACE that is currently available on the web is unreliable, incomplete, difficult to read, understandable but not actionable, and characterized by low overall quality. Websites need to revise their content to optimally educate consumers and support shared decision-making. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42020202747; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020202747 %M 33960948 %R 10.2196/25357 %U https://cancer.jmir.org/2021/2/e25357 %U https://doi.org/10.2196/25357 %U http://www.ncbi.nlm.nih.gov/pubmed/33960948 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 9 %N 5 %P e28413 %T Use of Machine Learning Algorithms to Predict the Understandability of Health Education Materials: Development and Evaluation Study %A Ji,Meng %A Liu,Yanmeng %A Zhao,Mengdan %A Lyu,Ziqing %A Zhang,Boren %A Luo,Xin %A Li,Yanlin %A Zhong,Yin %+ School of Languages and Cultures, University of Sydney, Camperdown, Sydney, NSW2006, Australia, 61 449858887, yanmeng.liu@sydney.edu.au %K machine learning %K PEMAT %K health education %K understandability evaluation %K patient-oriented %D 2021 %7 6.5.2021 %9 Original Paper %J JMIR Med Inform %G English %X Background: Improving the understandability of health information can significantly increase the cost-effectiveness and efficiency of health education programs for vulnerable populations. There is a pressing need to develop clinically informed computerized tools to enable rapid, reliable assessment of the linguistic understandability of specialized health and medical education resources. This paper fills a critical gap in current patient-oriented health resource development, which requires reliable and accurate evaluation instruments to increase the efficiency and cost-effectiveness of health education resource evaluation. Objective: We aimed to translate internationally endorsed clinical guidelines to machine learning algorithms to facilitate the evaluation of the understandability of health resources for international students at Australian universities. Methods: Based on international patient health resource assessment guidelines, we developed machine learning algorithms to predict the linguistic understandability of health texts for Australian college students (aged 25-30 years) from non-English speaking backgrounds. We compared extreme gradient boosting, random forest, neural networks, and C5.0 decision tree for automated health information understandability evaluation. The 5 machine learning models achieved statistically better results compared to the baseline logistic regression model. We also evaluated the impact of each linguistic feature on the performance of each of the 5 models. Results: We found that information evidentness, relevance to educational purposes, and logical sequence were consistently more important than numeracy skills and medical knowledge when assessing the linguistic understandability of health education resources for international tertiary students with adequate English skills (International English Language Testing System mean score 6.5) and high health literacy (mean 16.5 in the Short Assessment of Health Literacy-English test). Our results challenge the traditional views that lack of medical knowledge and numerical skills constituted the barriers to the understanding of health educational materials. Conclusions: Machine learning algorithms were developed to predict health information understandability for international college students aged 25-30 years. Thirteen natural language features and 5 evaluation dimensions were identified and compared in terms of their impact on the performance of the models. Health information understandability varies according to the demographic profiles of the target readers, and for international tertiary students, improving health information evidentness, relevance, and logic is critical. %M 33955834 %R 10.2196/28413 %U https://medinform.jmir.org/2021/5/e28413 %U https://doi.org/10.2196/28413 %U http://www.ncbi.nlm.nih.gov/pubmed/33955834 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 7 %N 5 %P e28352 %T YouTube Videos and Informed Decision-Making About COVID-19 Vaccination: Successive Sampling Study %A Basch,Charles E %A Basch,Corey H %A Hillyer,Grace C %A Meleo-Erwin,Zoe C %A Zagnit,Emily A %+ Teachers College, Columbia University, 525 W 120th St, New York, NY, 10027, United States, 1 212 678 3983, ceb35@columbia.edu %K YouTube %K vaccination %K COVID-19 %K social media %K communication %K misinformation %K disinformation %K adverse reactions %D 2021 %7 6.5.2021 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Social media platforms such as YouTube are used by many people to seek and share health-related information that may influence their decision-making about COVID-19 vaccination. Objective: The purpose of this study was to improve the understanding about the sources and content of widely viewed YouTube videos on COVID-19 vaccination. Methods: Using the keywords “coronavirus vaccination,” we searched for relevant YouTube videos, sorted them by view count, and selected two successive samples (with replacement) of the 100 most widely viewed videos in July and December 2020, respectively. Content related to COVID-19 vaccines were coded by two observers, and inter-rater reliability was demonstrated. Results: The videos observed in this study were viewed over 55 million times cumulatively. The number of videos that addressed fear increased from 6 in July to 20 in December 2020, and the cumulative views correspondingly increased from 2.6% (1,449,915 views) to 16.6% (9,553,368 views). There was also a large increase in the number of videos and cumulative views with respect to concerns about vaccine effectiveness, from 6 videos with approximately 6 million views in July to 25 videos with over 12 million views in December 2020. The number of videos and total cumulative views covering adverse reactions almost tripled, from 11 videos with approximately 6.5 million (11.7% of cumulative views) in July to 31 videos with almost 15.7 million views (27.2% of cumulative views) in December 2020. Conclusions: Our data show the potentially inaccurate and negative influence social media can have on population-wide vaccine uptake, which should be urgently addressed by agencies of the United States Public Health Service as well as its global counterparts. %M 33886487 %R 10.2196/28352 %U https://publichealth.jmir.org/2021/5/e28352 %U https://doi.org/10.2196/28352 %U http://www.ncbi.nlm.nih.gov/pubmed/33886487 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 4 %N 1 %P e26564 %T Tetrahydrocannabinol and Skin Cancer: Analysis of YouTube Videos %A Mamo,Andrina %A Szeto,Mindy D %A Mirhossaini,Roya %A Fortugno,Andrew %A Dellavalle,Robert P %+ Department of Dermatology, University of Colorado Anschutz Medical Campus, 1665 Aurora Court, 3rd Floor, Mailstop F703, Aurora, CO, 80045, United States, 1 720 848 0500, mindy.szeto@cuanschutz.edu %K THC %K tetrahydrocannabinol %K skin cancer %K YouTube %K cannabis %K social media %K internet %D 2021 %7 4.5.2021 %9 Original Paper %J JMIR Dermatol %G English %X Background: Cannabis oil is being used topically by patients with skin cancer as a homeopathic remedy, and has been promoted and popularized on social media, including YouTube. Although topical cannabinoids, especially tetrahydrocannabinol (THC), may have antitumor effects, results from a sparse number of clinical trials and peer-reviewed studies detailing safety and efficacy are still under investigation. Objective: We sought to assess the accuracy, quality, and reliability of THC oil and skin cancer information available on YouTube. Methods: The 10 most-viewed videos on THC oil and skin cancer were analyzed with the Global Quality Scale (GQS), DISCERN score, and useful/misleading criteria based on presentation of erroneous and scientifically unproven information. The videos were also inspected for source, length, and audience likes/dislikes. Top comments were additionally examined based on whether they were favorable, unfavorable, or neutral regarding the video content. Results: All analyzed videos (10/10, 100%) received a GQS score of 1, corresponding to poor quality of content, and 9/10 (90%) videos received a DISCERN score of 0, indicating poor reliability of information presented. All 10 videos were also found to be misleading and not useful according to established criteria. Top comments were largely either favorable (13/27, 48%) or neutral (13/27, 48%) toward the content of the videos, compared to unfavorable (1/27, 4%). Conclusions: Dermatologists should be aware that the spread of inaccurate information on skin cancer treatment currently exists on popular social media platforms and may lead to detrimental consequences for patients interested in pursuing alternative or homeopathic approaches. %M 37632811 %R 10.2196/26564 %U https://derma.jmir.org/2021/1/e26564 %U https://doi.org/10.2196/26564 %U http://www.ncbi.nlm.nih.gov/pubmed/37632811 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 5 %P e22766 %T Integrating Option Grid Patient Decision Aids in the Epic Electronic Health Record: Case Study at 5 Health Systems %A Scalia,Peter %A Ahmad,Farhan %A Schubbe,Danielle %A Forcino,Rachel %A Durand,Marie-Anne %A Barr,Paul James %A Elwyn,Glyn %+ Dartmouth College, 1 Medical Center Drive, Lebanon, NH, 03766, United States, 1 603 653 0806, glynelwyn@gmail.com %K shared decision making %K patient decision aids %K electronic health record %K implementation %K HL7 SMART on FHIR %D 2021 %7 3.5.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 33938806 %R 10.2196/22766 %U https://www.jmir.org/2021/5/e22766 %U https://doi.org/10.2196/22766 %U http://www.ncbi.nlm.nih.gov/pubmed/33938806 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 4 %P e27832 %T Communicating Scientific Uncertainty About the COVID-19 Pandemic: Online Experimental Study of an Uncertainty-Normalizing Strategy %A Han,Paul K J %A Scharnetzki,Elizabeth %A Scherer,Aaron M %A Thorpe,Alistair %A Lary,Christine %A Waterston,Leo B %A Fagerlin,Angela %A Dieckmann,Nathan F %+ Center for Outcomes Research and Evaluation, Maine Medical Center Research Institute, 509 Forest Avenue, Portland, ME, 04101, United States, 1 207 661 7619, hanp@mmc.org %K uncertainty %K communication %K ambiguity %K vaccination %K COVID-19 %D 2021 %7 22.4.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Communicating scientific uncertainty about public health threats such as COVID-19 is an ethically desirable task endorsed by expert guidelines on crisis communication. However, the communication of scientific uncertainty is challenging because of its potential to promote ambiguity aversion—a well-described syndrome of negative psychological responses consisting of heightened risk perceptions, emotional distress, and decision avoidance. Communication strategies that can inform the public about scientific uncertainty while mitigating ambiguity aversion are a critical unmet need. Objective: This study aimed to evaluate whether an “uncertainty-normalizing” communication strategy—aimed at reinforcing the expected nature of scientific uncertainty about the COVID-19 pandemic—can reduce ambiguity aversion, and to compare its effectiveness to conventional public communication strategies aimed at promoting hope and prosocial values. Methods: In an online factorial experiment conducted from May to June 2020, a national sample of 1497 US adults read one of five versions of an informational message describing the nature, transmission, prevention, and treatment of COVID-19; the versions varied in level of expressed scientific uncertainty and supplemental focus (ie, uncertainty-normalizing, hope-promoting, and prosocial). Participants then completed measures of cognitive, emotional, and behavioral manifestations of ambiguity aversion (ie, perceived likelihood of getting COVID-19, COVID-19 worry, and intentions for COVID-19 risk-reducing behaviors and vaccination). Analyses assessed (1) the extent to which communicating uncertainty produced ambiguity-averse psychological responses; (2) the comparative effectiveness of uncertainty-normalizing, hope-promoting, and prosocial communication strategies in reducing ambiguity-averse responses; and (3) potential moderators of the effects of alternative uncertainty communication strategies. Results: The communication of scientific uncertainty about the COVID-19 pandemic increased perceived likelihood of getting COVID-19 and worry about COVID-19, consistent with ambiguity aversion. However, it did not affect intentions for risk-reducing behaviors or vaccination. The uncertainty-normalizing strategy reduced these aversive effects of communicating scientific uncertainty, resulting in levels of both perceived likelihood of getting COVID-19 and worry about COVID-19 that did not differ from the control message that did not communicate uncertainty. In contrast, the hope-promoting and prosocial strategies did not decrease ambiguity-averse responses to scientific uncertainty. Age and political affiliation, respectively, moderated the effects of uncertainty communication strategies on intentions for COVID-19 risk-reducing behaviors and worry about COVID-19. Conclusions: Communicating scientific uncertainty about the COVID-19 pandemic produces ambiguity-averse cognitive and emotional, but not behavioral, responses among the general public, and an uncertainty-normalizing communication strategy reduces these responses. Normalizing uncertainty may be an effective strategy for mitigating ambiguity aversion in crisis communication efforts. More research is needed to test uncertainty-normalizing communication strategies and to elucidate the factors that moderate their effectiveness. %M 33769947 %R 10.2196/27832 %U https://www.jmir.org/2021/4/e27832 %U https://doi.org/10.2196/27832 %U http://www.ncbi.nlm.nih.gov/pubmed/33769947 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 4 %P e24586 %T “Ask a Doctor About Coronavirus”: How Physicians on Social Media Can Provide Valid Health Information During a Pandemic %A Furstrand,Dorthe %A Pihl,Andreas %A Orbe,Elif Bayram %A Kingod,Natasja %A Søndergaard,Jens %+ Section for Health Services Research, Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, Copenhagen, 1353, Denmark, 45 52675450, furstrand@gmail.com %K COVID-19 %K coronavirus %K digital health literacy %K eHealth literacy %K Facebook %K framework %K health information %K health literacy %K health promotion %K infodemic %K infodemiology %K mental health %K misinformation %K pandemic %K patient-physician relationship %K public health %K social media %K trust %K web-based community %D 2021 %7 20.4.2021 %9 Viewpoint %J J Med Internet Res %G English %X In the wake of the COVID-19 pandemic, the information stream has overflowed with accurate information, misinformation, and constantly changing guidelines. There is a great need for guidance on the identification of trustworthy health information, and official channels are struggling to keep pace with this infodemic. Consequently, a Facebook group was created where volunteer medical physicians would answer laypeople’s questions about the 2019 novel coronavirus. There is not much precedence in health care professional–driven Facebook groups, and the framework was thus developed continuously. We ended up with an approach without room for debate, which fostered a sense of calmness, trust, and safety among the questioners. Substantial moderator effort was needed to ensure high quality and consistency through collaboration among the presently >200 physicians participating in this group. At the time of writing, the group provides a much-needed service to >58,000 people in Denmark during this crisis. %M 33835935 %R 10.2196/24586 %U https://www.jmir.org/2021/4/e24586 %U https://doi.org/10.2196/24586 %U http://www.ncbi.nlm.nih.gov/pubmed/33835935 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 4 %P e25323 %T Factors Associated With Perceived Trust of False Abortion Websites: Cross-sectional Online Survey %A Chaiken,Sarina Rebecca %A Han,Lisa %A Darney,Blair G %A Han,Leo %+ Oregon Health & Science University, 3181 SW Sam Jackson Park Road, Portland, OR, 97239, United States, 1 5034942999, chaiken@ohsu.edu %K abortion %K website trust %K internet use %K reproductive health %K misinformation %D 2021 %7 19.4.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Most patients use the internet to search for health information. While there is a vast repository of searchable information online, much of the content is unregulated and therefore potentially incorrect, conflicting, or confusing. Abortion information online is particularly prone to being inaccurate as antichoice websites publish purposefully misleading information in formats that appear as neutral resources. To understand how antichoice websites appear neutral, we need to understand the specific website features of antichoice websites that impart an impression of trustworthiness. Objective: We sought to identify the characteristics of false or misleading abortion websites that make these websites appear trustworthy to the public. Methods: We conducted a cross-sectional study using Amazon’s Mechanical Turk platform. We used validated questionnaires to ask participants to rate 11 antichoice websites and one neutral website identified by experts, focusing on website content, creators, and design. We collected sociodemographic data and participant views on abortion. We used a composite measure of “mean overall trust” as our primary outcome. Using correlation matrices, we determined which website characteristics were most associated with mean overall trust. Finally, we used linear regression to identify participant characteristics associated with overall trust. Results: Our analytic sample included 498 participants aged from 22 to 70 years, and 50.1% (247/493) identified as female. Across 11 antichoice websites, creator confidence (“I believe that the creators of this website are honest and trustworthy”) had the highest correlation coefficient (strongest relationship) with mean overall trust (coefficient=0.70). Professional appearance (coefficient=0.59), look and feel (coefficient=0.59), perception that the information is created by experts (coefficient=0.59), association with a trustworthy organization (coefficient=0.58), valued features and functionalities (coefficient=0.54), and interactive capabilities (coefficient=0.52) all demonstrated strong relationships with mean overall trust. At the individual level, prochoice leaning was associated with higher overall trust of the neutral website (B=−0.43, 95% CI −0.87 to 0.01) and lower mean overall trust of the antichoice websites (B=0.52, 95% CI 0.05 to 0.99). Conclusions: The mean overall trust of antichoice websites is most associated with design characteristics and perceived trustworthiness of website creators. Those who believe that access to abortion should be limited are more likely to have higher mean overall trust for antichoice websites. %M 33871378 %R 10.2196/25323 %U https://www.jmir.org/2021/4/e25323 %U https://doi.org/10.2196/25323 %U http://www.ncbi.nlm.nih.gov/pubmed/33871378 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 8 %N 2 %P e21270 %T Developing a Decision Aid to Facilitate Informed Decision Making About Invasive Mechanical Ventilation and Lung Transplantation Among Adults With Cystic Fibrosis: Usability Testing %A Dauber-Decker,Katherine L %A Basile,Melissa %A King,D'Arcy %A Polo,Jennifer %A Calise,Karina %A Khan,Sundas %A Solomon,Jeffrey %A Dunne,Daniel %A Hajizadeh,Negin %+ Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Feinstein Institutes for Medical Research, Center for Health Innovations and Outcomes Research, 600 Community Drive, Manhasset, NY, 11030, United States, 1 3474004684, jpolo1@northwell.edu %K usability %K medical informatics %K clinical decision support %K cystic fibrosis %K advance care planning %D 2021 %7 14.4.2021 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Cystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (DA) to help patients with CF make better informed decisions regarding treatments and advance care planning. We built the DA around two major treatment decisions: whether to have a lung transplant and whether to agree to invasive mechanical ventilation (intubation). Objective: This study aims to conduct usability testing of the InformedChoices CF DA among key stakeholder groups. Methods: We performed a patient needs assessment using think-aloud usability testing with patients with CF, their surrogates, and CF clinicians. Think-aloud participants provided feedback while navigating the DA, and after viewing, they answered surveys. Transcripts from the think-aloud sessions and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation. We assessed the ease of use of the DA (System Usability Scale) and also assessed the participants’ perceptions regarding the overall tone, with an emphasis on emotional reactions to the DA content, level of detail, and usefulness of the information for making decisions about either intubation or lung transplantation, including how well they understood the information and were able to apply it to their own decision-making process. We also assessed the DA’s ease of navigation, esthetics, and whether participants were able to complete a series of usability tasks (eg, locating specific information in the DA or using the interactive survival estimates calculator) to ensure that the website was easy to navigate during the clinic-based advance care planning discussions. Results: A total of 12 participants from 3 sites were enrolled from March 9 to August 30, 2018, for the usability testing: 5 CF clinicians (mean age 48.2, SD 12.0 years), 5 adults with CF, and 2 family and surrogate caregivers of people with CF (mean age of CF adults and family and surrogate caregivers 38.8, SD 10.8 years). Among the 12 participants, the average System Usability Scale score for the DA was 88.33 (excellent). Think-aloud analysis identified 3 themes: functionality, visibility and navigation, and content and usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow. Several changes to improve the content and usefulness of the DA were recommended, including adding information about alternatives to childbearing, such as adoption and surrogacy. On the basis of survey responses, we found that the navigation of the site was easy for clinicians, patients, and surrogates who participated in usability testing. Conclusions: Usability testing revealed areas of potential improvement. Testing also yielded positive feedback, suggesting the DA’s future success. Integrating changes before implementation should improve the DA’s comprehension, navigation, and usefulness and lead to greater adoption. %M 33851921 %R 10.2196/21270 %U https://humanfactors.jmir.org/2021/2/e21270 %U https://doi.org/10.2196/21270 %U http://www.ncbi.nlm.nih.gov/pubmed/33851921 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 4 %P e26331 %T Assessing Public Interest Based on Wikipedia’s Most Visited Medical Articles During the SARS-CoV-2 Outbreak: Search Trends Analysis %A Chrzanowski,Jędrzej %A Sołek,Julia %A Fendler,Wojciech %A Jemielniak,Dariusz %+ Department of Biostatistics and Translational Medicine, Medical University of Łódź, Mazowiecka 15, Łódź, 92-215, Poland, 48 422722585, wojciech.fendler@umed.lodz.pl %K COVID-19 %K pandemic %K media %K Wikipedia %K internet %K online health information %K information seeking %K interest %K retrospective %K surveillance %K infodemiology %K infoveillance %D 2021 %7 12.4.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: In the current era of widespread access to the internet, we can monitor public interest in a topic via information-targeted web browsing. We sought to provide direct proof of the global population’s altered use of Wikipedia medical knowledge resulting from the new COVID-19 pandemic and related global restrictions. Objective: We aimed to identify temporal search trends and quantify changes in access to Wikipedia Medicine Project articles that were related to the COVID-19 pandemic. Methods: We performed a retrospective analysis of medical articles across nine language versions of Wikipedia and country-specific statistics for registered COVID-19 deaths. The observed patterns were compared to a forecast model of Wikipedia use, which was trained on data from 2015 to 2019. The model comprehensively analyzed specific articles and similarities between access count data from before (ie, several years prior) and during the COVID-19 pandemic. Wikipedia articles that were linked to those directly associated with the pandemic were evaluated in terms of degrees of separation and analyzed to identify similarities in access counts. We assessed the correlation between article access counts and the number of diagnosed COVID-19 cases and deaths to identify factors that drove interest in these articles and shifts in public interest during the subsequent phases of the pandemic. Results: We observed a significant (P<.001) increase in the number of entries on Wikipedia medical articles during the pandemic period. The increased interest in COVID-19–related articles temporally correlated with the number of global COVID-19 deaths and consistently correlated with the number of region-specific COVID-19 deaths. Articles with low degrees of separation were significantly similar (P<.001) in terms of access patterns that were indicative of information-seeking patterns. Conclusions: The analysis of Wikipedia medical article popularity could be a viable method for epidemiologic surveillance, as it provides important information about the reasons behind public attention and factors that sustain public interest in the long term. Moreover, Wikipedia users can potentially be directed to credible and valuable information sources that are linked with the most prominent articles. %M 33667176 %R 10.2196/26331 %U https://www.jmir.org/2021/4/e26331 %U https://doi.org/10.2196/26331 %U http://www.ncbi.nlm.nih.gov/pubmed/33667176 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 4 %P e24342 %T De-Implementing Opioid Use and Implementing Optimal Pain Management Following Dental Extractions (DIODE): Protocol for a Cluster Randomized Trial %A Rindal,D Brad %A Asche,Stephen E %A Gryczynski,Jan %A Kane,Sheryl M %A Truitt,Anjali R %A Shea,Tracy L %A Ziegenfuss,Jeanette Y %A Schwartz,Robert P %A Worley,Donald C %A Mitchell,Shannon G %+ HealthPartners Institute, 8170 33rd Ave So, MS21112R, Bloomington, MN, United States, 1 952 967 5026, donald.b.rindal@healthpartners.com %K analgesics %K opioid %K prescriptions %K tooth extraction %K pain, postoperative %K dentistry %K oral surgery %K shared decision-making %K health communications %K implementation science %D 2021 %7 12.4.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Overdose deaths from prescription opioid analgesics are a continuing crisis in the United States. Opioid analgesics are among the most frequently prescribed drugs by dentists. An estimated 5 million people undergo third-molar extractions in the United States each year, resulting in postoperative pain. Studies show that, in most cases, the combination of ibuprofen and acetaminophen is an effective alternative to commonly prescribed opioid analgesics for the management of postextraction pain. Nevertheless, many dentists routinely prescribe opioids after dental extractions. Objective: We describe the rationale, design, and methods for a randomized trial of interventions designed to de-implement opioid prescribing by dentists while implementing effective nonopioid analgesics following dental extractions. Methods: Using a prospective, 3-arm, cluster randomized trial design with dentists as the unit randomized and patient-level prescribing data as the primary outcome, we will compare different strategies to reduce the reliance on opioids and increase the use of alternative pain management approaches utilizing information support tools aimed at both providers and their patients. The study will test the efficacy of 2 interventions to decrease opioid prescribing following dental extractions: clinical decision support with (CDS-E) and without patient education (CDS). Providers will be randomized to CDS, CDS-E, or standard practice. Patient-level outcomes will be determined via review of comprehensive electronic health records. We will compare study arms on differential change in prescribing patterns from pre- to postimplementation of the intervention. The primary outcome of interest is a binary indicator of whether or not the patient received an opioid prescription on the day of the extraction encounter. We will also examine recommendations or prescriptions for nonopioid analgesics, patients’ perceptions of shared decision making, and patients’ pain experiences following the extraction. Results: The HealthPartners Institutional Review Board approved the study. All study materials including the CDS and patient education materials have been developed and pilot tested, and the protocol has been approved by the National Institute of Dental and Craniofacial Research. The intervention was implemented in February 2020, with 51 dentists who were randomized to 1 of the 3 arms. Conclusions: If the intervention strategies are shown to be effective, they could be implemented more broadly in dental settings with high levels of opioid prescribing. Trial Registration: ClinicalTrials.gov NCT03584789, https://clinicaltrials.gov/ct2/show/NCT03584789 International Registered Report Identifier (IRRID): DERR1-10.2196/24342 %M 33843594 %R 10.2196/24342 %U https://www.researchprotocols.org/2021/4/e24342 %U https://doi.org/10.2196/24342 %U http://www.ncbi.nlm.nih.gov/pubmed/33843594 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 4 %P e24884 %T User-Centered Counseling and Male Involvement in Contraceptive Decision Making: Protocol for a Randomized Controlled Trial %A Karra,Mahesh %A Zhang,Kexin %+ Frederick S Pardee School of Global Studies, Boston University, 152 Bay State Road, Room G04C, Boston, MA, 02215, United States, 1 617 358 0197, mvkarra@bu.edu %K user-centered counseling %K male involvement %K contraceptive use %K family planning %K randomized controlled trial %K Malawi %K Sub-Saharan Africa %D 2021 %7 5.4.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: To achieve informed choice within the framework of reproductive autonomy, family planning programs have begun to adopt user-centered approaches to service provision, which highlight the individual client as the focal point of interaction and key decision maker. However, little is known about how user-centered approaches to family planning, particularly family planning counseling, shape contraceptive preferences and choices. Objective: We conducted a multiarmed randomized controlled trial to identify the causal impact of user-centered approaches to family planning counseling on women’s contraceptive decision making in urban Malawi. This study aims to determine how a tailored, preference-driven approach to family planning counseling and the involvement of male partners during the counseling process may contribute to shaping women’s contraceptive preferences and choices. Methods: Married women aged 18-35 years were recruited and randomly assigned to 1 of the 3 intervention arms or a control arm characterized by the following two interventions: an intervention arm in which women were encouraged to invite their husbands to family planning counseling (husband invitation arm) and an intervention arm in which women received targeted, tailored counseling on up to five contraceptive methods (as opposed to up to 13 contraceptive methods) that reflected women’s stated preferences for contraceptive methods. Women were randomized into a control arm, T0 (no husband invitation, standard counseling); T1 (husband invitation, standard counseling); T2 (no husband invitation, targeted counseling); and T3 (husband invitation, targeted counseling). Following counseling, all women received a package of family planning services, which included free transportation to a local family planning clinic and financial reimbursement for family planning services. Follow-up surveys were conducted with women 1 month after counseling. Results: A total of 785 women completed the baseline survey, and 782 eligible respondents were randomized to 1 of the 3 intervention groups or the control group (T1, n=223; T2, n=225; T3, n=228; T0, n=108). Furthermore, 98.1% (767/782) of women were contacted for follow-up. Among the 767 women who were contacted, 95.3% (731/767) completed the follow-up survey. The analysis of the primary outcomes is ongoing and is expected to be completed by the end of 2021. Conclusions: The results from this trial will fill knowledge gaps on the effectiveness of tailored family planning counseling and male involvement in family planning on women’s stated and realized contraceptive preferences. More generally, the study will provide evidence on how user-centered counseling may affect women’s willingness to use and continue contraception to realize their contraceptive preferences. Trial Registration: American Economics Association’s Registry for Randomized Controlled Trials AEARCTR-0004194; https://www.socialscienceregistry.org/trials/4194/history/46808. Registry for International Development Impact Evaluations RIDIE-STUDY-ID-5ce4f42bbc2bf; https://ridie.3ieimpact.org/index.php?r=search/detailView&id=823. International Registered Report Identifier (IRRID): DERR1-10.2196/24884 %M 33818398 %R 10.2196/24884 %U https://www.researchprotocols.org/2021/4/e24884 %U https://doi.org/10.2196/24884 %U http://www.ncbi.nlm.nih.gov/pubmed/33818398 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 9 %N 3 %P e26265 %T Users’ Willingness to Share Health Information in a Social Question-and-Answer Community: Cross-sectional Survey in China %A Li,PengFei %A Xu,Lin %A Tang,TingTing %A Wu,Xiaoqian %A Huang,Cheng %+ College of Medical Informatics, Chongqing Medical University, No.1 Yixueyuan Road, Yuzhong District, Chongqing, , China, 86 023 6848 0060, huangcheng@cqmu.edu.cn %K health information %K willingness to share information %K %K structural equation model %K Zhihu %D 2021 %7 30.3.2021 %9 Original Paper %J JMIR Med Inform %G English %X 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 (β=.264, P<.001), intrinsic reward (β=.260, P=.03), self-efficacy (β=.468, P<.001), and community influence (β=.277, P=.003) had a positive effect on users’ willingness to share health information (WSHI). By contrast, extrinsic reward (β=−0.351, P<.001) had a negative effect. Self-efficacy also had a mediating effect (β=.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. %M 33783364 %R 10.2196/26265 %U https://medinform.jmir.org/2021/3/e26265 %U https://doi.org/10.2196/26265 %U http://www.ncbi.nlm.nih.gov/pubmed/33783364 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e22618 %T Using the Ensuring Quality Information for Patients Tool to Assess Patient Information on Appendicitis Websites: Systematic Search and Evaluation %A Ghani,Shahi %A Fan,Ka Siu %A Fan,Ka Hay %A Lenti,Lorenzo %A Raptis,Dimitri %+ St George's, University of London, Cranmer Terrace, Tooting, London, SW17 0RE, United Kingdom, 44 7772 075720, shahi92@hotmail.com %K appendicitis %K patient information %K EQIP tool %K quality %K tool %K surgery %K online health information %K internet %K health-seeking %K behavior %K review %D 2021 %7 26.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Appendicitis is a common surgical problem among the young adult population, who are likely to use the internet to obtain medical information. This information may determine the health-seeking behavior of an individual and may delay medical attention. Little is known regarding the quality of patient information on appendicitis on the internet, as this has not been previously studied. Objective: The aim of our study was to identify the quality of information regarding appendicitis on websites intended for the public. Methods: We conducted a systematic review of information on appendicitis available online using the following 4 search terms in google: “appendicitis,” “appendix,” “appendectomy,” and “appendicectomy”. The top 100 websites of each search term were assessed using the validated Ensuring Quality Information for Patients (EQIP) tool (score 0-36). Results: A total of 119 websites met the eligibility criteria for evaluation. The overall median EQIP score for all websites was 20 (IQR 18-22). More than half the websites originated from the USA (65/119, 54.6%), and 45.4% (54/119) of all websites originated from hospitals, although 43% (23/54) of these did not mention qualitative risks from surgery. Incidence rates were only provided for complications and mortality in 12.6% (15/119) and 3.3% (4/119) of all websites, respectively. Conclusions: The assessment of the quality and readability of websites concerning appendicitis by the EQIP tool indicates that most sites online were of poor credibility, with minimal information regarding complication rates and mortality. To improve education and awareness of appendicitis, there is an immediate need for more informative and patient-centered websites that are more compatible with international quality standards. %M 33729160 %R 10.2196/22618 %U https://www.jmir.org/2021/3/e22618 %U https://doi.org/10.2196/22618 %U http://www.ncbi.nlm.nih.gov/pubmed/33729160 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e13999 %T Googling for Neurological Disorders: From Seeking Health-Related Information to Patient Empowerment, Advocacy, and Open, Public Self-Disclosure in the Neurology 2.0 Era %A Martini,Mariano %A Bragazzi,Nicola Luigi %+ Department of Health Sciences, School of Public Health, University of Genoa, Via Antonio Pastore 1, Genoa, 16132, Italy, 39 3279769965, robertobragazzi@gmail.com %K advocacy %K health information seeking %K neurological disorders %K open self-disclosure %D 2021 %7 26.3.2021 %9 Viewpoint %J J Med Internet Res %G English %X Since its introduction, the internet has played a major role in reshaping patient-physician communication and interactions, having fostered a shift from a paternalistic to a patient-centered model. Because of its dynamic nature, the internet has been used as a platform to not only disseminate knowledge—favored by improved access to an increasing wealth of available resources—but also to spread advocacy and awareness, contribute to fund-raising, and facilitate open, public self-disclosure of one’s own disease, thus eliminating any taboo and reducing the stigma associated with it. The era of Medicine 2.0 is characterized by openness, collaboration, participation, and social networking. The current situation is completely different from the time when Lorenzo Odone’s parents, after his diagnosis of adrenoleukodystrophy, decided to attend medical school in order to collect information about a devastating, unknown disease and had to contend with medical authorities at that establishment to convince them of the alleged effectiveness and safety of their discovered therapeutics. Orphan and rare neurological diseases have currently received recognition on web-based resources. However, while the intention is not to ridicule Odone’s family legacy and the “complicated lessons” they have reported, some issues should be carefully addressed by health authorities, such as the reputability, reliability, and accuracy of material available on the internet and prevention of the dissemination of material that could instill illusions and unjustified hopes in individuals seeking medical treatment. Neurologists should be aware of such digital resources, participate in web-based activities, and recommend select high-quality websites to their patients. %M 30946019 %R 10.2196/13999 %U https://www.jmir.org/2021/3/e13999 %U https://doi.org/10.2196/13999 %U http://www.ncbi.nlm.nih.gov/pubmed/30946019 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e21642 %T Share to Seek: The Effects of Disease Complexity on Health Information–Seeking Behavior %A Alasmari,Ashwag %A Zhou,Lina %+ University of Maryland, Baltimore County, 1000 Hilltop Cir, Baltimore, MD, 21250, United States, 1 (410) 455 1000, ashwag1@umbc.edu %K health information consumers %K multimorbidity %K information searching %K information seeking %K disease development %D 2021 %7 24.3.2021 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 33759803 %R 10.2196/21642 %U https://www.jmir.org/2021/3/e21642 %U https://doi.org/10.2196/21642 %U http://www.ncbi.nlm.nih.gov/pubmed/33759803 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 3 %P e28314 %T A Smartphone App for Engaging Patients With Catheter-Associated Urinary Tract Infections: Protocol for an Interrupted Time-Series Analysis %A Bentvelsen,Robbert Gerard %A Veldkamp,Karin Ellen %A Chavannes,Niels H %+ Department of Medical Microbiology, Leiden University Medical Center, Albinusdreef 2, Leiden, 2333 ZA, Netherlands, 31 7152 61652, rbentvelsen@gmail.com %K catheter-associated urinary tract infections %K infection control %K patient empowerment %K urinary catheter %K eHealth %D 2021 %7 23.3.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Catheter-associated urinary tract infections (CAUTIs) are the main cause of health care–associated infections, and they increase the disease burden, antibiotic usage, and hospital stay. Inappropriate placement and unnecessarily prolonged usage of a catheter lead to an elevated and preventable risk of infection. The smartphone app Participatient has been developed to involve hospitalized patients in communication and decision-making related to catheter use and to control unnecessary (long-term) catheter use to prevent CAUTIs. Sustained behavioral changes for infection prevention can be promoted by empowering patients through Participatient. Objective: The primary aim of our multicenter prospective interrupted time-series analysis is to reduce inappropriate catheter usage by 15%. We will evaluate the efficacy of Participatient in this quality improvement study in clinical wards. Our secondary endpoints are to reduce CAUTIs and to increase patient satisfaction, involvement, and trust with health care services. Methods: We will conduct a multicenter interrupted time-series analysis—a strong study design when randomization is not feasible—consisting of a pre- and postintervention point-prevalence survey distributed among participating wards to investigate the efficacy of Participatient in reducing the inappropriate usage of catheters. After customizing Participatient to the wards’ requirements, it will be implemented with a catheter indication checklist among clinical wards in 4 large hospitals in the Netherlands. We will collect clinical data every 2 weeks for 6 months in the pre- and postintervention periods. Simultaneously, we will assess the impact of Participatient on patient satisfaction with health care services and providers and the patients’ perceived involvement in health care through questionnaires, and the barriers and facilitators of eHealth implementation through interviews with health care workers. Results: To reduce the inappropriate use of approximately 40% of catheters (currently in use) by 15%, we aim to collect 9-12 data points from 70-100 patients per survey date per hospital. Thereafter, we will conduct an interrupted time-series analysis and present the difference between the unadjusted and adjusted rate ratios with a corresponding 95% CI. Differences will be considered significant when P<.05. Conclusions: Our protocol may help reduce the inappropriate use of catheters and subsequent CAUTIs. By sharing reliable information and daily checklists with hospitalized patients via an app, we aim to provide them a tool to be involved in health care–related decision-making and to increase the quality of care. Trial Registration: Netherlands Trial Register NL7178; https://www.trialregister.nl/trial/7178 International Registered Report Identifier (IRRID): DERR1-10.2196/28314 %M 33755026 %R 10.2196/28314 %U https://www.researchprotocols.org/2021/3/e28314 %U https://doi.org/10.2196/28314 %U http://www.ncbi.nlm.nih.gov/pubmed/33755026 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 3 %P e24589 %T Mobile Health Crowdsensing (MHCS) Intervention on Chronic Disease Awareness: Protocol for a Systematic Review %A Tokosi,Temitope Oluwaseyi %A Twum-Darko,Michael %+ Graduate Centre for Management, Faculty of Business and Management Sciences, Cape Peninsula University of Technology, Keizersgracht Street, District Six Campus, Cape Town, 8000, South Africa, 27 76 047 1328, toksymoore@gmail.com %K mHealth %K crowdsensing %K chronic diseases %K awareness %K mobile phone %D 2021 %7 19.3.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Mobile health crowdsensing (MHCS) involves the use of mobile communication technologies to promote health by supporting health care practices (eg, health data collection, delivery of health care information, or patient observation and provision of care). MHCS technologies (eg, smartphones) have sensory capabilities, such as GPS, voice, light, and camera, to collect, analyze, and share user-centered data (explicit and implicit). The current literature indicates no scientific study related to MHCS interventions for chronic diseases. The proposed systematic review will examine the impact of MHCS interventions on chronic disease awareness. Objective: The objectives of this study are to identify and describe various MHCS intervention strategies applied to chronic disease awareness. Methods: Literature from various databases, such as MEDLINE, Embase, PsycINFO, CINAHL, and Cochrane Central Register of Controlled Trials, will be examined. Trial registers, reports, grey literature, and unpublished academic theses will also be included. All mobile technologies, such as cell phones, personal digital assistants, and tablets that have short message service, multimedia message service, video, and audio capabilities, will be included. MHCS will be the primary intervention strategy. The search strategy will include keywords such as mHealth, crowdsensing, and awareness among other medical subject heading terms. Articles published from January 1, 1945, to December 31, 2019, will be eligible for inclusion. The authors will independently screen and select studies, extract data, and assess the risk of bias, with discrepancies resolved by an independent party not involved in the study. The authors will assess statistical heterogeneity by examining the types of participants, interventions, study designs, and outcomes in each study, and pool studies judged to be statistically homogeneous. In the assessment of heterogeneity, a sensitivity analysis will be considered to explore statistical heterogeneity. Statistical heterogeneity will be investigated using the chi-square test of homogeneity on Cochrane Q test, and quantified using the I2 statistic. Results: The preliminary search query found 1 paper. Further literature search commenced in mid-March 2021 and is to be concluded in April 2021. The proposed systematic review protocol has been registered in PROSPERO (The International Prospective Register of Systematic Reviews; no. CRD42020161435). Furthermore, the use of search data extraction and capturing in Review Manager version 5.3 (Cochrane) commenced in January 2021 and ended in February 2021. Further literature search will begin in mid-March 2021 and will be concluded in April 2021. The final stages will include analyses and writing, which are anticipated to start and be completed in May 2021. Conclusions: The knowledge derived from this study will inform health care stakeholders—including researchers, policy makers, investors, health professionals, technologists, and engineers—of the impact of MHCS interventions on chronic disease awareness. International Registered Report Identifier (IRRID): PRR1-10.2196/24589 %M 33739288 %R 10.2196/24589 %U https://www.researchprotocols.org/2021/3/e24589 %U https://doi.org/10.2196/24589 %U http://www.ncbi.nlm.nih.gov/pubmed/33739288 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e24926 %T Developing a Web-Based Shared Decision-Making Tool for Fertility Preservation Among Reproductive-Age Women With Breast Cancer: An Action Research Approach %A Tseng,Ling-Ming %A Lien,Pei-Ju %A Huang,Chen-Yu %A Tsai,Yi-Fang %A Chao,Ta-Chung %A Huang,Sheng-Miauh %+ MacKay Medical College, Department of Nursing, No. 46, Section 3, Zhongzheng Road, Sanzhi District, New Taipei City, 252, Taiwan, 886 2 26360303 ext 1316, r910862@yahoo.com.tw %K breast cancer %K shared decision making %K website %K action research %K fertility preservation %D 2021 %7 17.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The pregnancy rate after cancer treatment for female survivors is lower than that of the general population. Future infertility is a significant concern for patients with breast cancer and is associated with a poor quality of life. Reproductive-age patients with breast cancer have safe options when choosing a type of fertility preservation method to be applied. Better information and support resources aimed at women to support their decision making are needed. Objective: The objective of this study was to develop a web-based shared decision-making tool for helping patients with breast cancer make decisions on fertility preservation. Methods: We used the action research cycle of observing, reflecting, planning, and acting to develop a web-based shared decision-making tool. The following four phrases were applied: (1) observe and reflect—collect and analyze the decision-making experiences of patients and health care providers; (2) reflect and plan—apply the initial results to create a paper design and modify the content; (3) plan and act—brainstorm about the web pages and modify the content; (4) act and observe—evaluate the effectiveness and refine the website’s shared decision-making tool. Interviews, group meetings, and constant dialogue were conducted between the various participants at each step. Effectiveness was evaluated using the Preparation for Decision-Making scale. Results: Five major parts were developed with the use of the action research approach. The Introduction (part 1) describes the severity of cancer treatment and infertility. Options (part 2) provides the knowledge of fertility preservation. The shared decision-making tool was designed as a step-by-step process (part 3) that involves the comparison of options, patient values, and preferences; their knowledge regarding infertility and options; and reaching a collective decision. Resources (part 4) provides information on the hospitals that provide such services, and References (part 5) lists all the literature cited in the website. The results show the web-based shared decision-making meets both patients’ and health providers’ needs and helps reproductive-age patients with breast cancer make decisions about fertility preservation. Conclusions: We have created the first web-based shared decision-making tool for making fertility preservation decisions in Taiwan. We believe female patients of reproductive age will find the tool useful and its use will become widespread, which should increase patient autonomy and improve communication about fertility preservation with clinicians. Trial Registration: Clinicaltrials.gov NCT04602910; https://clinicaltrials.gov/ct2/show/NCT04602910 %M 33729164 %R 10.2196/24926 %U https://www.jmir.org/2021/3/e24926 %U https://doi.org/10.2196/24926 %U http://www.ncbi.nlm.nih.gov/pubmed/33729164 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 9 %N 3 %P e25473 %T Antibiotic Prescription Rates After eVisits Versus Office Visits in Primary Care: Observational Study %A Entezarjou,Artin %A Calling,Susanna %A Bhattacharyya,Tapomita %A Milos Nymberg,Veronica %A Vigren,Lina %A Labaf,Ashkan %A Jakobsson,Ulf %A Midlöv,Patrik %+ Center for Primary Health Care Research, Department of Clinical Sciences in Malmö/Family Medicine, Lund University, Box 50332, Malmö, Sweden, 46 40 391400, artin.entezarjou@med.lu.se %K telemedicine %K antibiotics %K streptococcal tonsillitis %K cystitis %K respiratory tract infection %K virtual visit %K virtual %K eVisit %D 2021 %7 15.3.2021 %9 Original Paper %J JMIR Med Inform %G English %X 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 %M 33720032 %R 10.2196/25473 %U https://medinform.jmir.org/2021/3/e25473 %U https://doi.org/10.2196/25473 %U http://www.ncbi.nlm.nih.gov/pubmed/33720032 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e19461 %T Parents’ Perspectives on Using Artificial Intelligence to Reduce Technology Interference During Early Childhood: Cross-sectional Online Survey %A Glassman,Jill %A Humphreys,Kathryn %A Yeung,Serena %A Smith,Michelle %A Jauregui,Adam %A Milstein,Arnold %A Sanders,Lee %+ Clinical Excellence Research Center, School of Medicine, Stanford University, 365 Lasuen Street, #308, Stanford, CA, 94305, United States, 1 8314195302, jill.r.glassman@stanford.edu %K parenting %K digital technology %K mobile phone %K child development %K artificial intelligence %D 2021 %7 15.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Parents’ use of mobile technologies may interfere with important parent-child interactions that are critical to healthy child development. This phenomenon is known as technoference. However, little is known about the population-wide awareness of this problem and the acceptability of artificial intelligence (AI)–based tools that help with mitigating technoference. Objective: This study aims to assess parents’ awareness of technoference and its harms, the acceptability of AI tools for mitigating technoference, and how each of these constructs vary across sociodemographic factors. Methods: We administered a web-based survey to a nationally representative sample of parents of children aged ≤5 years. Parents’ perceptions that their own technology use had risen to potentially problematic levels in general, their perceptions of their own parenting technoference, and the degree to which they found AI tools for mitigating technoference acceptable were assessed by using adaptations of previously validated scales. Multiple regression and mediation analyses were used to assess the relationships between these scales and each of the 6 sociodemographic factors (parent age, sex, language, ethnicity, educational attainment, and family income). Results: Of the 305 respondents, 280 provided data that met the established standards for analysis. Parents reported that a mean of 3.03 devices (SD 2.07) interfered daily in their interactions with their child. Almost two-thirds of the parents agreed with the statements “I am worried about the impact of my mobile electronic device use on my child” and “Using a computer-assisted coach while caring for my child would help me notice more quickly when my device use is interfering with my caregiving” (187/281, 66.5% and 184/282, 65.1%, respectively). Younger age, Hispanic ethnicity, and Spanish language spoken at home were associated with increased technoference awareness. Compared to parents’ perceived technoference and sociodemographic factors, parents’ perceptions of their own problematic technology use was the factor that was most associated with the acceptance of AI tools. Conclusions: Parents reported high levels of mobile device use and technoference around their youngest children. Most parents across a wide sociodemographic spectrum, especially younger parents, found the use of AI tools to help mitigate technoference during parent-child daily interaction acceptable and useful. %M 33720026 %R 10.2196/19461 %U https://www.jmir.org/2021/3/e19461 %U https://doi.org/10.2196/19461 %U http://www.ncbi.nlm.nih.gov/pubmed/33720026 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e24475 %T Benchmarking Triage Capability of Symptom Checkers Against That of Medical Laypersons: Survey Study %A Schmieding,Malte L %A Mörgeli,Rudolf %A Schmieding,Maike A L %A Feufel,Markus A %A Balzer,Felix %+ Institute of Medical Informatics, Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Charitéplatz 1, Berlin, 10117, Germany, 49 30 450 570425, felix.balzer@charite.de %K digital health %K triage %K symptom checker %K patient-centered care %K eHealth apps %K mobile phone %K decision support systems %K clinical %K consumer health information %K health literacy %D 2021 %7 10.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Symptom checkers (SCs) are tools developed to provide clinical decision support to laypersons. Apart from suggesting probable diagnoses, they commonly advise when users should seek care (triage advice). SCs have become increasingly popular despite prior studies rating their performance as mediocre. To date, it is unclear whether SCs can triage better than those who might choose to use them. Objective: This study aims to compare triage accuracy between SCs and their potential users (ie, laypersons). Methods: On Amazon Mechanical Turk, we recruited 91 adults from the United States who had no professional medical background. In a web-based survey, the participants evaluated 45 fictitious clinical case vignettes. Data for 15 SCs that had processed the same vignettes were obtained from a previous study. As main outcome measures, we assessed the accuracy of the triage assessments made by participants and SCs for each of the three triage levels (ie, emergency care, nonemergency care, self-care) and overall, the proportion of participants outperforming each SC in terms of accuracy, and the risk aversion of participants and SCs by comparing the proportion of cases that were overtriaged. Results: The mean overall triage accuracy was similar for participants (60.9%, SD 6.8%; 95% CI 59.5%-62.3%) and SCs (58%, SD 12.8%). Most participants outperformed all but 5 SCs. On average, SCs more reliably detected emergencies (80.6%, SD 17.9%) than laypersons did (67.5%, SD 16.4%; 95% CI 64.1%-70.8%). Although both SCs and participants struggled with cases requiring self-care (the least urgent triage category), SCs more often wrongly classified these cases as emergencies (43/174, 24.7%) compared with laypersons (56/1365, 4.10%). Conclusions: Most SCs had no greater triage capability than an average layperson, although the triage accuracy of the five best SCs was superior to the accuracy of most participants. SCs might improve early detection of emergencies but might also needlessly increase resource utilization in health care. Laypersons sometimes require support in deciding when to rely on self-care but it is in that very situation where SCs perform the worst. Further research is needed to determine how to best combine the strengths of humans and SCs. %M 33688845 %R 10.2196/24475 %U https://www.jmir.org/2021/3/e24475 %U https://doi.org/10.2196/24475 %U http://www.ncbi.nlm.nih.gov/pubmed/33688845 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e24006 %T User-Centered Development of a Web Platform Supporting Community-Based Health Care Organizations for Older Persons in Need of Support: Qualitative Focus Group Study %A Biehl,Verena %A Becker,Heidrun %A Ogrin,Alenka %A Reissner,Alenka %A Burger,Johannes %A Glaessel,Andrea %+ Institute of Health Sciences, Zurich University of Applied Sciences, Katharina-Sulzer-Platz 9, Winterthur, CH-8401, Switzerland, 41 58 934 4397, andrea.glaessel@zhaw.ch %K community-based health care services %K older persons in need of support %K user-centered design %K focus groups %K qualitative research %K web platform %D 2021 %7 10.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The ongoing changes in population demographics increase the relevance of dignified aging across Europe. Community-based health care (CBHC) organizations are necessary to provide sustainable strategies for organizing care for older persons in need of support. To support the digitalization of these organizations, new business models and suitable web platforms are necessary. Objective: This study, which is part of the European Active and Assisted Living (AAL) project called “ICareCoops”, aimed to explore concepts, approaches, and workflows of CBHC organizations to achieve a comprehensive understanding of extant services offered and relevant requirements to support these services with information and computer technology (ICT) solutions. Methods: A qualitative study with six focus groups (FGs) with 40 participants was conducted in Switzerland and Slovenia to identify potential stakeholders’ needs and requirements for the user-centered development of a web platform. Data were collected from three different stakeholder groups: (1) older persons in need of support as care receivers, (2) significant others of older persons in need of support, and (3) managers or care providers of CBHC organizations. A semistructured interview guide with open questions was used for data collection. FG sessions were audio-recorded and transcribed verbatim. Thematic content analysis was used to analyze the content of the FG sessions. To assist with further web platform development, the responses of the FG participants were translated into user stories to describe technical requirements. Results: By analyzing the transcripts, five main categories were identified: (1) ICT usage behavior of users, (2) challenges of web platform usage, (3) content and technical requirements for the web platform, (4) form and services of CBHC organizations, and (5) rationales of CBHC organizations. The main issues identified were the need for seniors to have individual contact with the CBHC organization and the possibility to coordinate routine services via the web platform, such as ordering meals-on-wheels or booking a caregiver to accompany an older person to the doctor. Conclusions: The majority of participants showed a lack of familiarity with the usage of ICT. Nevertheless, they were open-minded regarding web platform usage to facilitate workflows and to benefit CBHC organizations. Cooperatives as an organizational model demonstrate a high potential to address users’ needs. Therefore, the web platform offers an essential tool for innovative health care models in the future. Searching for care services, contacting care providers, and communicating with care providers was preferred via personal contact and seemed to be the key element for user acceptance and for the successful implementation of a web platform like “ICareCoops” to support CBHC organizations. %M 33688837 %R 10.2196/24006 %U https://www.jmir.org/2021/3/e24006 %U https://doi.org/10.2196/24006 %U http://www.ncbi.nlm.nih.gov/pubmed/33688837 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 3 %P e24302 %T Educational Needs and Preferences for Patient-Centered Outcomes Research in the Cystic Fibrosis Community: Mixed Methods Study %A Godfrey,Emily M %A Kazmerski,Traci M %A Brown,Georgia %A Thayer,Erin K %A Mentch,Laura %A Pam,Molly %A Al Achkar,Morhaf %+ Department of Family Medicine, University of Washington School of Medicine, 4311 11th Ave NE, Suite 210, Box 354982, Seattle, WA, 98105, United States, 1 206 685 4895, godfreye@uw.edu %K cystic fibrosis %K needs assessment %K patient-centered outcomes research %K training %K education %K team building %K patient engagement %D 2021 %7 4.3.2021 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 33661127 %R 10.2196/24302 %U https://formative.jmir.org/2021/3/e24302 %U https://doi.org/10.2196/24302 %U http://www.ncbi.nlm.nih.gov/pubmed/33661127 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e15846 %T Effects of Information Architecture on the Effectiveness and User Experience of Web-Based Patient Education in Middle-Aged and Older Adults: Online Randomized Experiment %A Dekkers,Tessa %A Melles,Marijke %A Vehmeijer,Stephan B W %A de Ridder,Huib %+ Faculty of Behavioural, Management and Social sciences, University of Twente, Drienerlolaan 5, Enschede, 7522 NB, Netherlands, 31 534899741, t.dekkers@utwente.nl %K user-computer interface %K total joint replacement %K user-centered design %K health education %K mobile phone %K computer-assisted instruction %K patient education as topic %K models, theoretical %K middle aged %K aged %K humans %K internet %D 2021 %7 3.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Web-based patient education is increasingly offered to improve patients’ ability to learn, remember, and apply health information. Efficient organization, display, and structural design, that is, information architecture (IA), can support patients’ ability to independently use web-based patient education. However, the role of IA in the context of web-based patient education has not been examined systematically. Objective: To support intervention designers in making informed choices that enhance patients’ learning, this paper describes a randomized experiment on the effects of IA on the effectiveness, use, and user experience of a patient education website and examines the theoretical mechanisms that explain these effects. Methods: Middle-aged and older adults with self-reported hip or knee joint complaints were recruited to use and evaluate 1 of 3 patient education websites containing information on total joint replacement surgery. Each website contained the same textual content based on an existing leaflet but differed in the employed IA design (tunnel, hierarchical, or matrix design). Participants rated the websites on satisfaction, engagement, control, relevance, trust, and novelty and completed an objective knowledge test. Analyses of variance and structural equation modeling were used to examine the effects of IA and construct a theoretical model. Results: We included 215 participants in our analysis. IA did not affect knowledge gain (P=.36) or overall satisfaction (P=.07) directly. However, tunnel (mean 3.22, SD 0.67) and matrix (mean 3.17, SD 0.69) architectures were found to provide more emotional support compared with hierarchical architectures (mean 2.86, SD 0.60; P=.002). Furthermore, increased perceptions of personal relevance in the tunnel IA (β=.18) were found to improve satisfaction (β=.17) indirectly. Increased perceptions of active control in the matrix IA (β=.11) also improved satisfaction (β=.27) indirectly. The final model of the IA effects explained 74.3% of the variance in satisfaction and 6.8% of the variance in knowledge and achieved excellent fit (χ217,215=14.7; P=.62; root mean square error of approximation=0.000; 95% CI [0.000-0.053]; comparative fit index=1.00; standardized root mean square residual=0.044). Conclusions: IA has small but notable effects on users’ experiences with web-based health education interventions. Web-based patient education designers can employ tunnel IA designs to guide users through sequentially ordered content or matrix IA to offer users more control over navigation. Both improve user satisfaction by increasing user perceptions of relevance (tunnel) and active control (matrix). Although additional research is needed, hierarchical IA designs are currently not recommended, as hierarchical content is perceived as less supportive, engaging, and relevant, which may diminish the use and, in turn, the effect of the educational intervention. %M 33656446 %R 10.2196/15846 %U https://www.jmir.org/2021/3/e15846 %U https://doi.org/10.2196/15846 %U http://www.ncbi.nlm.nih.gov/pubmed/33656446 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 3 %P e25235 %T Feasibility and Acceptability of a Digital Intervention to Support Shared Decision-making in Children’s and Young People’s Mental Health: Mixed Methods Pilot Randomized Controlled Trial %A Liverpool,Shaun %A Edbrooke-Childs,Julian %+ Evidence-Based Practice Unit, Anna Freud National Centre for Children and Families, University College London, 4-8 Rodney Street, The Kantor Centre of Excellence, London, N1 9JH, United Kingdom, 44 7539468630, shaun.liverpool.14@ucl.ac.uk %K mental health %K pilot projects %K child %K adolescent %K parents %K shared decision making %D 2021 %7 2.3.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Interventions to involve parents in decisions regarding children’s and young people’s mental health are associated with positive outcomes. However, appropriately planning effectiveness studies is critical to ensure that meaningful evidence is collected. It is important to conduct pilot studies to evaluate the feasibility and acceptability of the intervention itself and the feasibility of the protocol to test effectiveness. Objective: This paper reports the findings from a feasibility and acceptability study of Power Up for Parents, an intervention to promote shared decision-making (SDM) and support parents and caregivers making decisions regarding children’s and young people’s mental health. Methods: A mixed method study design was adopted. In stage 1, health care professionals and parents provided feedback on acceptability, usefulness, and suggestions for further development. Stage 2 was a multicenter, 3-arm, individual, and cluster randomized controlled pilot feasibility trial with parents accessing services related to children’s and young people’s mental health. Outcome measures collected data on demographics, participation rates, SDM, satisfaction, and parents’ anxiety. Qualitative data were analyzed using thematic analysis. Google Analytics estimates were used to report engagement with the prototype. Outcomes from both stages were tested against a published set of criteria for proceeding to a randomized controlled trial. Results: Despite evidence suggesting the acceptability of Power Up for Parents, the findings suggest that recruitment modifications are needed to enhance the feasibility of collecting follow-up data before scaling up to a fully powered randomized controlled trial. On the basis of the Go or No-Go criteria, only 50% (6/12) of the sites successfully recruited participants, and only 38% (16/42) of parents completed follow-up measures. Nonetheless, health care practitioners and parents generally accessed and used the intervention. Themes describing appearance and functionality, perceived need and general helpfulness, accessibility and appropriateness, and a wish list for improvement emerged, providing valuable information to inform future development and refinement of the intervention. Conclusions: Owing to the high attrition observed in the trial, proceeding directly to a full randomized controlled trial may not be feasible with this recruitment strategy. Nonetheless, with some minor adjustments and upgrades to the intervention, this pilot study provides a platform for future evaluations of Power Up for Parents. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN) 39238984; http://www.isrctn.com/ISRCTN39238984. International Registered Report Identifier (IRRID): RR2-10.2196/14571 %M 33650973 %R 10.2196/25235 %U https://formative.jmir.org/2021/3/e25235 %U https://doi.org/10.2196/25235 %U http://www.ncbi.nlm.nih.gov/pubmed/33650973 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 2 %P e19074 %T Assessment of Patients’ Ability to Review Electronic Health Record Information to Identify Potential Errors: Cross-sectional Web-Based Survey %A Freise,Lisa %A Neves,Ana Luisa %A Flott,Kelsey %A Harrison,Paul %A Kelly,John %A Darzi,Ara %A Mayer,Erik K %+ Patient Safety Translational Research Centre, Institute of Global Health Innovation, Imperial College London, St Mary’s Campus Queen, Elizabeth Queen Mother Wing, London, W2 1NY, United Kingdom, 44 (0)20 7589 5111, ana.luisa.neves14@ic.ac.uk %K patient portals %K electronic health records %K patient participation %K medical errors %K patient safety %D 2021 %7 26.2.2021 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 33635277 %R 10.2196/19074 %U https://formative.jmir.org/2021/2/e19074 %U https://doi.org/10.2196/19074 %U http://www.ncbi.nlm.nih.gov/pubmed/33635277 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 2 %P e25404 %T Husbands’ Knowledge of Breast Cancer and Their Wives’ Attitudes and Practices Related to Breast Cancer Screening in Saudi Arabia: Cross-sectional Online Survey %A Sabgul,Afnan Abdulnasir %A Qattan,Ameerah M N %A Hashmi,Rubayyat %A Al-Hanawi,Mohammed Khaled %+ Department of Health Services and Hospital Administration, Faculty of Economics and Administration, King Abdulaziz University, University Building 125, Faculties Street, Jeddah, 80200, Saudi Arabia, 966 556522222, mkalhanawi@kau.edu.sa %K attitude %K breast cancer %K husbands %K knowledge %K Saudi Arabia %K screening %D 2021 %7 25.2.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Despite Saudi Arabia’s free and well-established cancer care program, breast cancer incidence and mortality are rising. Husbands’ knowledge, and wives’ attitudes and practices related to breast cancer screening are not well understood in Saudi Arabia. Objective: The aim of this study was to investigate husbands’ knowledge, and wives’ attitudes and practices related to breast cancer screening in Saudi Arabia. Methods: This cross-sectional study collected data from 403 husbands in the holy city of Makkah through an online self-reported questionnaire over a period of 2 months, from May 6 to July 7, 2020. Tabulation, bivariate, and multiple regression analyses were the major tools used for data analysis. Multivariate logistic regressions were used to examine the association between husbands’ knowledge and wives’ behavior regarding breast cancer screening methods. Results: Husbands’ knowledge score (a 1-point increase) was significantly associated with the wives’ utilization of mammograms (adjusted odds ratio [AOR] 1.089, 95% CI 1.024-1.159) and breast self-examination (AOR 1.177, 95% CI 1.105-1.255). Husbands’ knowledge also influenced the wives’ attitudes toward learning about breast self-examination (AOR 1.138, 95% CI 1.084-1.195). There was no significant association between husbands’ knowledge and wives’ utilization of clinical breast examination. However, richer husbands showed a socioeconomic gradient concerning their wives’ utilization of clinical breast examinations (AOR 2.603, 95% CI 1.269-5.341). Conclusions: Overall, husbands’ knowledge of breast cancer influences wives’ attitudes and practices related to breast cancer screening methods in Saudi Arabia. Thus, interventions delivered to husbands might increase breast cancer awareness and survival. %M 33629959 %R 10.2196/25404 %U https://www.jmir.org/2021/2/e25404 %U https://doi.org/10.2196/25404 %U http://www.ncbi.nlm.nih.gov/pubmed/33629959 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 2 %P e15946 %T Development and Feasibility of a Web-Based Decision Aid for Patients With Ulcerative Colitis: Qualitative Pilot Study %A Kim,Andrew H %A Girgis,Afaf %A De Cruz,Peter %A Siegel,Corey A %A Karimi,Neda %A Ruban,Sasha O %A Sechi,Alexandra J %A Ng,Wa Sang Watson %A Andrews,Jane M %A Connor,Susan J %+ Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, The University of New South Wales, Department of Gastroenterology Liverpool Hospital, Sydney, Australia, 61 2 8738 4085, Susan.Connor1@health.nsw.gov.au %K shared decision making %K decision aid %K ulcerative colitis %D 2021 %7 25.2.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Shared decision making (SDM) is becoming an important part of ulcerative colitis (UC) management because of the increasing complexity of available treatment choices and their trade-offs. The use of decision aids (DA) may be effective in increasing patients’ participation in UC management but their uptake has been limited due to high attrition rates and lack of a participatory approach to their design and implementation. Objective: The primary aim of this study is to explore the perspectives of Australian patients and their clinicians regarding the feasibility and acceptability of myAID, a web-based DA, in informing treatment decisions in UC. The secondary aim is to use the findings of this pilot study to inform the design of a cluster randomized clinical trial (CRCT) to assess the efficacy of the DA compared with usual care. Methods: myAID, a DA was designed and developed using a participatory approach by a multidisciplinary team of clinicians, patients, and nonmedical volunteers. A qualitative pilot study to evaluate the DA, involving patients with UC facing new treatment decisions and inflammatory bowel disease clinicians, was undertaken. Results: A total of 11 patients with UC and 15 clinicians provided feedback on myAID. Themes explored included the following: Acceptability and usability of myAID—myAID was found to be acceptable by the majority of clinicians as a tool to facilitate SDM, uptake was thought to vary depending on clinicians’ approaches to patient education and practice, potential to overcome time restrictions associated with outpatient clinics was identified, presentation of unbiased information enabling patients to digest information at their own pace was noted, and potential to provoke anxiety among patients with a new diagnosis or mild disease was raised; Perceived role and usefulness of myAID—discordance was observed between patients who prioritized voicing preferences and clinicians who prioritized treatment adherence, and myAID facilitated early discussion of medical versus surgical treatment options; Target population and timing of use—greatest benefit was perceived at the time of initiating or changing treatment and following commencement of immunosuppressive therapy; and Potential concerns and areas for improvement—some perceived that use of myAID may precipitate anxiety by increasing decisional conflict and impact the therapeutic relationship between patient and the clinician and may increase resource requirements. Conclusions: These preliminary findings suggest that patients and clinicians consider myAID as a feasible and acceptable tool to facilitate SDM for UC management. These pilot data have informed a participatory approach to the design of a CRCT, which will evaluate the clinical efficacy of myAID compared with usual care. Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12617001246370; http://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12617001246370. %M 33629956 %R 10.2196/15946 %U https://www.jmir.org/2021/2/e15946 %U https://doi.org/10.2196/15946 %U http://www.ncbi.nlm.nih.gov/pubmed/33629956 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 2 %P e25125 %T Differences in Basic Life Support Knowledge Between Junior Medical Students and Lay People: Web-Based Questionnaire Study %A Sturny,Ludovic %A Regard,Simon %A Larribau,Robert %A Niquille,Marc %A Savoldelli,Georges Louis %A Sarasin,François %A Schiffer,Eduardo %A Suppan,Laurent %+ Division of Emergency Medicine, Department of Anesthesiology, Clinical Pharmacology, Intensive Care and Emergency Medicine, University of Geneva Hospitals and Faculty of Medicine, Rue Gabrielle-Perret-Gentil 4, Geneva, 1211, Switzerland, 41 795532579, laurent.suppan@hcuge.ch %K basic life support %K cardiopulmonary resuscitation %K medical students %K undergraduate medical education %K out-of-hospital cardiac arrest %K life support %K cardiopulmonary %K medical education %D 2021 %7 23.2.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Early cardiopulmonary resuscitation and prompt defibrillation markedly increase the survival rate in the event of out-of-hospital cardiac arrest (OHCA). As future health care professionals, medical students should be trained to efficiently manage an unexpectedly encountered OHCA. Objective: Our aim was to assess basic life support (BLS) knowledge in junior medical students at the University of Geneva Faculty of Medicine (UGFM) and to compare it with that of the general population. Methods: Junior UGFM students and lay people who had registered for BLS classes given by a Red Cross–affiliated center were sent invitation links to complete a web-based questionnaire. The primary outcome was the between-group difference in a 10-question score regarding cardiopulmonary resuscitation knowledge. Secondary outcomes were the differences in the rate of correct answers for each individual question, the level of self-assessed confidence in the ability to perform resuscitation, and a 6-question score, “essential BLS knowledge,” which only contains key elements of the chain of survival. Continuous variables were first analyzed using the Student t test, then by multivariable linear regression. Fisher exact test was used for between-groups comparison of binary variables. Results: The mean score was higher in medical students than in lay people for both the 10-question score (mean 5.8, SD 1.7 vs mean 4.2, SD 1.7; P<.001) and 6-question score (mean 3.0, SD 1.1 vs mean 2.0, SD 1.0; P<.001). Participants who were younger or already trained scored consistently better. Although the phone number of the emergency medical dispatch center was well known in both groups (medical students, 75/80, 94% vs lay people, 51/62, 82%; P=.06), most participants were unable to identify the criteria used to recognize OHCA, and almost none were able to correctly reorganize the BLS sequence. Medical students felt more confident than lay people in their ability to perform resuscitation (mean 4.7, SD 2.2 vs mean 3.1, SD 2.1; P<.001). Female gender and older age were associated with lower confidence, while participants who had already attended a BLS course prior to taking the questionnaire felt more confident. Conclusions: Although junior medical students were more knowledgeable than lay people regarding BLS procedures, the proportion of correct answers was low in both groups, and changes in BLS education policy should be considered. %M 33620322 %R 10.2196/25125 %U https://www.jmir.org/2021/2/e25125 %U https://doi.org/10.2196/25125 %U http://www.ncbi.nlm.nih.gov/pubmed/33620322 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 4 %N 1 %P e24517 %T Content in YouTube Videos for Rosacea: Cross-sectional Study %A Basch,Corey H %A Laforet,Priscila E %A Hillyer,Grace C %A Seidel,Erica J %A Jaime,Christie %+ Department of Public Health, William Paterson University, 300 Pompton Rd, Wayne, NJ, 07470, United States, 1 973 720 2603, baschc@wpunj.edu %K rosacea %K YouTube %K social media %K skin disease %K skin %K chronic %K dermatology %D 2021 %7 10.2.2021 %9 Original Paper %J JMIR Dermatol %G English %X Background: Rosacea is an inflammatory skin disease that is chronic in nature. In addition to the physical symptoms, there are substantial quality of life issues that patients with rosacea experience, largely due to the visible nature in which rosacea manifests. Objective: The purpose of this study was to describe the content related to rosacea in highly viewed English- and Spanish-language videos on YouTube. Methods: We coded identifying information for each video and categories including characteristics of rosacea, clinical solutions, and alternative solutions. The 100 YouTube videos examined were viewed 18.5 million times between 2006 and 2020, and 57.3% (10,652,665/18,592,742) of these views were of consumer videos. Results: Videos posted by consumers more often promoted or were trying to sell a product or procedure (32/55, 58% of consumers vs 10/31, 32% of medical professionals and 4/14, 29% of television, internet, news, or entertainment sources; P=.03) and more frequently mentioned the use of makeup or other ways to cover up rosacea (30/55, 55% of consumers vs 6/31, 19% of medical professionals and 2/14, 14% of television, internet, news, or entertainment sources; P<.001). Videos sourced from medical professionals more often mentioned medication (17/31, 55%) than videos uploaded by consumers (14/55, 25%) or TV, internet, news, or entertainment sources (3/14, 21%) (P=.01). Conclusions: Given that rosacea is experienced differently for each person, consumer advice that works for one individual may not work for another. There is a need for reliable videos on rosacea to emphasize this and clarify misconceptions. %M 37632798 %R 10.2196/24517 %U http://derma.jmir.org/2021/1/e24517/ %U https://doi.org/10.2196/24517 %U http://www.ncbi.nlm.nih.gov/pubmed/37632798 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 6 %N 1 %P e15410 %T Feasibility of the Web-Based Intervention Designed to Educate and Improve Adherence Through Learning to Use Continuous Glucose Monitor (IDEAL CGM) Training and Follow-Up Support Intervention: Randomized Controlled Pilot Study %A Smith,Madison B %A Albanese-O'Neill,Anastasia %A Yao,Yingwei %A Wilkie,Diana J %A Haller,Michael J %A Keenan,Gail M %+ College of Nursing, University of Florida, 1225 Center Drive, HPNP Room 3229, PO Box 100197, Gainesville, FL, United States, 1 4074432555, madisonbricksmith@gmail.com %K type 1 diabetes mellitus %K continuous glucose monitor %K web-based training %K diabetes education %K intervention %D 2021 %7 9.2.2021 %9 Original Paper %J JMIR Diabetes %G English %X Background: Proper training and follow-up for patients new to continuous glucose monitor (CGM) use are required to maintain adherence and achieve diabetes-related outcomes. However, CGM training is hampered by the lack of evidence-based standards and poor reimbursement. We hypothesized that web-based CGM training and education would be effective and could be provided with minimal burden to the health care team. Objective: The aim of this study was to perform a pilot feasibility study testing a theory-driven, web-based intervention designed to provide extended training and follow-up support to adolescents and young adults newly implementing CGM and to describe CGM adherence, glycemic control, and CGM-specific psychosocial measures before and after the intervention. Methods: The “Intervention Designed to Educate and improve Adherence through Learning to use CGM (IDEAL CGM)” web-based training intervention was based on supporting literature and theoretical concepts adapted from the health belief model and social cognitive theory. Patients new to CGM, who were aged 15-24 years with type 1 diabetes for more than 6 months were recruited from within a public university’s endocrinology clinic. Participants were randomized to enhanced standard care or enhanced standard care plus the IDEAL CGM intervention using a 1:3 randomization scheme. Hemoglobin A1c levels and psychosocial measures were assessed at baseline and 3 months after start of the intervention. Results: Ten eligible subjects were approached for recruitment and 8 were randomized. Within the IDEAL CGM group, 4 of the 6 participants received exposure to the web-based training. Half of the participants completed at least 5 of the 7 modules; however, dosage of the intervention and level of engagement varied widely among the participants. This study provided proof of concept for use of a web-based intervention to deliver follow-up CGM training and support. However, revisions to the intervention are needed in order to improve engagement and determine feasibility. Conclusions: This pilot study underscores the importance of continued research efforts to optimize the use of web-based intervention tools for their potential to improve adherence and glycemic control and the psychosocial impact of the use of diabetes technologies without adding significant burden to the health care team. Enhancements should be made to the intervention to increase engagement, maximize responsiveness, and ensure attainment of the skills necessary to achieve consistent use and improvements in glycemic control prior to the design of a larger well-powered clinical trial to establish feasibility. Trial Registration: ClinicalTrials.gov NCT03367351, https://clinicaltrials.gov/ct2/show/NCT03367351. %M 33560234 %R 10.2196/15410 %U http://diabetes.jmir.org/2021/1/e15410/ %U https://doi.org/10.2196/15410 %U http://www.ncbi.nlm.nih.gov/pubmed/33560234 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 2 %P e21338 %T Online Mental Health Animations for Young People: Qualitative Empirical Thematic Analysis and Knowledge Transfer %A Coughlan,Helen %A Quin,David %A O'Brien,Kevin %A Healy,Colm %A Deacon,Jack %A Kavanagh,Naoise %A Humphries,Niamh %A Clarke,Mary C %A Cannon,Mary %+ Royal College of Surgeons in Ireland, Department of Psychiatry, RCSI Education & Research Centre, Dublin 9, D09 YD60, Ireland, 353 1 8093855, helencoughlan@rcsi.ie %K mental health %K public health %K mental health literacy %K social media %K youth %K qualitative %K knowledge translation %K anxiety %K bullying %K depression %K loneliness %K internet %D 2021 %7 9.2.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Mental ill-health is one of the most significant health and social issues affecting young people globally. To address the mental health crisis, a number of cross-sectoral research and action priorities have been identified. These include improving mental health literacy, translating research findings into accessible public health outputs, and the use of digital technologies. There are, however, few examples of public health–oriented knowledge transfer activities involving collaborations between researchers, the Arts, and online platforms in the field of youth mental health. Objective: The primary aim of this project was to translate qualitative research findings into a series of online public mental health animations targeting young people between the ages of 16 and 25 years. A further aim was to track online social media engagement and viewing data for the animations for a period of 12 months. Methods: Qualitative data were collected from a sample of 17 youth in Ireland, aged 18-21 years, as part of the longitudinal population-based Adolescent Brain Development study. Interviews explored the life histories and the emotional and mental health of participants. The narrative analysis revealed 5 thematic findings relating to young people’s emotional and mental health. Through a collaboration between research, the Arts, and the online sector, the empirical thematic findings were translated into 5 public health animations. The animations were hosted and promoted on 3 social media platforms of the Irish youth health website called SpunOut. Viewing data, collected over a 12-month period, were analyzed to determine the reach of the animations. Results: Narrative thematic analysis identified anxiety, depression, feeling different, loneliness, and being bullied as common experiences for young people. These thematic findings formed the basis of the animations. During the 12 months following the launch of the animations, they were viewed 15,848 times. A majority of views occurred during the period of the social media ad campaign at a cost of €0.035 (approximately US $0.042) per view. Animations on feeling different and being bullied accounted for the majority of views. Conclusions: This project demonstrates that online animations provide an accessible means of translating empirical research findings into meaningful public health outputs. They offer a cost-effective way to provide targeted online information about mental health, coping, and help-seeking to young people. Cross-sectoral collaboration is required to leverage the knowledge and expertise required to maximize the quality and potential reach of any knowledge transfer activities. A high level of engagement is possible by targeting non–help-seeking young people on their native social media platforms. Paid promotion is, therefore, an important consideration when budgeting for online knowledge translation and dissemination activities in health research. %M 33560231 %R 10.2196/21338 %U http://www.jmir.org/2021/2/e21338/ %U https://doi.org/10.2196/21338 %U http://www.ncbi.nlm.nih.gov/pubmed/33560231 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 2 %P e26155 %T Feasibility of a Web-Based Platform (Trial My App) to Efficiently Conduct Randomized Controlled Trials of mHealth Apps For Patients With Cardiovascular Risk Factors: Protocol For Evaluating an mHealth App for Hypertension %A Lokker,Cynthia %A Jezrawi,Rita %A Gabizon,Itzhak %A Varughese,Jobin %A Brown,Michael %A Trottier,Dan %A Alvarez,Elizabeth %A Schwalm,Jon-David %A McGillion,Michael %A Ma,Jinhui %A Bhagirath,Vinai %+ Health Information Research Unit, Department of Health Research Methods, Evidence, and Impact, McMaster University, 1280 Main St W, CRL 125, Hamilton, ON, L8S4L8, Canada, 1 905259140 ext 22208, LOKKERC@MCMASTER.CA %K mHealth %K mobile health %K hypertension %K app %K patient-oriented %K feasibility %K cardiovascular disease %K internet-administered %K randomized controlled trial %D 2021 %7 1.2.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Mobile health (mHealth) interventions can improve health by improving cardiovascular risk factors, but their adoption in care by physicians and patients is untapped. Few mHealth apps have been evaluated in clinical trials, and due to the fast pace of technological development, those previously evaluated are often outdated by the time trial results are available. Given the rapid pace of change in this field, it is not feasible to rigorously evaluate mHealth apps with current methodologies. Objective: The overall aim of this pilot study was to test the feasibility of using a web research platform called Trial My App to conduct efficient and rigorous web-based randomized controlled trials (RCTs) of mHealth apps relevant to patients with cardiovascular risk factors by evaluating an app that targets hypertension. Methods: For this study, 200 participants with suboptimally controlled hypertension will be recruited through advertisements in newsletters, media, and the internet, as well as through referrals from their health care providers. Screening, consent, randomization, and collection of patient-important health confidence and self-management ability outcomes will be conducted online through the Trial My App research platform. Participants will be randomized into 2 groups: 100 that will use an mHealth app for tracking hypertension and 100 that will be considered as an educational control. All participants will complete questionnaires at 0, 1, 3 and 6 months after enrolment. A substudy to validate the method of blood pressure readings and the consistency of data entered through Trial My App will be conducted with 40 participants. Results: The development of the Trial My App web platform has been completed. The creation of survey instruments has been completed in collaboration with our patient partners and advisory board. Recruitment is expected to begin in the first quarter of 2021; data collection and analysis are expected to be completed approximately 1 year after study commencement. Results will be disseminated through conferences and publications. The primary outcomes of this study include the feasibility of conducting an RCT using the Trial My App platform by reporting recruitment, retention, and completion statistics. We will validate app-entered data with a standard 7-day home blood pressure measurement method. Lastly, the pilot, nonblinded RCT will assess the effectiveness of the mHealth app in improving the control of hypertension compared with the control of hypertension in the educational control group. Conclusions: This study will determine if it is feasible to use the Trial My App web-based platform to evaluate the effectiveness of mHealth apps for patients with cardiovascular risk factors. As more mHealth apps are evaluated in RCTs, patients will be able to select apps that meet their needs and physicians will be able to make evidence-based recommendations to their patients for apps aimed at improving cardiovascular health. Trial Registration: ClinicalTrials.gov NCT04528654; https://clinicaltrials.gov/ct2/show/NCT04528654 International Registered Report Identifier (IRRID): PRR1-10.2196/26155 %M 33522978 %R 10.2196/26155 %U https://www.researchprotocols.org/2021/2/e26155 %U https://doi.org/10.2196/26155 %U http://www.ncbi.nlm.nih.gov/pubmed/33522978 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 1 %P e20841 %T A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype %A Benedict,Catherine %A Dauber-Decker,Katherine L %A King,D'Arcy %A Hahn,Alexandria %A Ford,Jennifer S %A Diefenbach,Michael %+ Stanford University School of Medicine, 401 Quarry Road, Palo Alto, CA, 94305-5718, United States, 1 2012077117, cbenedict@stanford.edu %K patient-centered care %K user-centered design %K decision support techniques %K decision aid %K cancer %K fertility %K internet-based intervention %K web-based intervention %K mobile phone %K psychosocial intervention %D 2021 %7 22.1.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients’ needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users’ needs, values, abilities, and limitations. Objective: This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building. Methods: User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed. Results: The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process. Conclusions: The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement. %M 33480848 %R 10.2196/20841 %U http://formative.jmir.org/2021/1/e20841/ %U https://doi.org/10.2196/20841 %U http://www.ncbi.nlm.nih.gov/pubmed/33480848 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 1 %P e18396 %T Cardiovascular Assessment Tool for Breast Cancer Survivors and Oncology Providers: Usability Study %A Weaver,Kathryn E %A Klepin,Heidi D %A Wells,Brian J %A Dressler,Emily V %A Winkfield,Karen M %A Lamar,Zanetta S %A Avery,Tiffany P %A Pajewski,Nicholas M %A Hundley,W Gregory %A Johnson,Aimee %A Davidson,Eleanor C %A Lopetegui,Marcelo %A Foraker,Randi E %+ Institute for Informatics, Washington University in St Louis School of Medicine, 600 S Taylor Avenue, Suite 102, Campus Box 8102, St Louis, MO, 63110, United States, 1 314 273 2211, randi.foraker@wustl.edu %K electronic health records %K clinical decision support %K usability testing %K cardiovascular diseases %K cancer survivors %K breast cancer %D 2021 %7 21.1.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Cardiovascular health is of increasing concern to breast cancer survivors and their health care providers, as many survivors are more likely to die from cardiovascular disease than cancer. Implementing clinical decision support tools to address cardiovascular risk factor awareness in the oncology setting may enhance survivors’ attainment or maintenance of cardiovascular health. Objective: We sought to evaluate survivors’ awareness of cardiovascular risk factors and examine the usability of a novel electronic health record enabled cardiovascular health tool from the perspective of both breast cancer survivors and oncology providers. Methods: Breast cancer survivors (n=49) recruited from a survivorship clinic interacted with the cardiovascular health tool and completed pre and posttool assessments about cardiovascular health knowledge and perceptions of the tool. Oncologists, physician assistants, and nurse practitioners (n=20) who provide care to survivors also viewed the cardiovascular health tool and completed assessments of perceived usability and acceptability. Results: Enrolled breast cancer survivors (84% White race, 4% Hispanic ethnicity) had been diagnosed 10.8 years ago (SD 6.0) with American Joint Committee on Cancer stage 0, I, or II (45/49, 92%). Prior to viewing the tool, 65% of survivors (32/49) reported not knowing their level for one or more cardiovascular health factors (range 0-4). On average, only 45% (range 0%-86%) of survivors’ known cardiovascular health factors were at an ideal level. More than 50% of survivors had ideal smoking status (45/48, 94%) or blood glucose level (29/45, 64%); meanwhile, less than 50% had ideal blood pressure (12/49, 24%), body mass index (12/49, 24%), cholesterol level (17/35, 49%), diet (7/49, 14%), and physical activity (10/49. 20%). More than 90% of survivors thought the tool was easy to understand (46/47, 98%), improved their understanding (43/47, 91%), and was helpful (45/47, 96%); overall, 94% (44/47 survivors) liked the tool. A majority of survivors (44/47, 94%) thought oncologists should discuss cardiovascular health during survivorship care. Most (12/20, 60%) oncology providers (female: 12/20, 60%; physicians: 14/20, 70%) had been practicing for more than 5 years. Most providers agreed the tool provided useful information (18/20, 90%), would help their effectiveness (18/20, 90%), was easy to use (20/20, 100%), and presented information in a useful format (19/20, 95%); and 85% of providers (17/20) reported they would use the tool most or all of the time when providing survivorship care. Conclusions: These usability data demonstrate acceptability of a cardiovascular health clinical decision support tool in oncology practices. Oncology providers and breast cancer survivors would likely value the integration of such apps in survivorship care. By increasing awareness and communication regarding cardiovascular health, electronic health record–enabled tools may improve survivorship care delivery for breast cancer and ultimately patient outcomes. %M 33475511 %R 10.2196/18396 %U http://cancer.jmir.org/2021/1/e18396/ %U https://doi.org/10.2196/18396 %U http://www.ncbi.nlm.nih.gov/pubmed/33475511 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 1 %P e14794 %T A Bayesian Network–Based Browsing Model for Patients Seeking Radiology-Related Information on Hospital Websites: Development and Usability Study %A Suzuki,Ryusuke %A Suzuki,Teppei %A Tsuji,Shintaro %A Fujiwara,Kensuke %A Yamashina,Hiroko %A Endoh,Akira %A Ogasawara,Katsuhiko %+ Graduate School of Health Sciences, Hokkaido University, N12-W5, Kita-ku, Sapporo, Japan, 81 11 706 3409, oga@hs.hokudai.ac.jp %K web marketing %K internet %K hospitals %K radiology %K information-seeking behavior %D 2021 %7 19.1.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: An increasing number of people are visiting hospital websites to seek better services and treatments compared to the past. It is therefore important for hospitals to develop websites to meet the needs of their patients. However, few studies have investigated whether and how the current hospital websites meet the patient’s needs. Above all, in radiation departments, it may be difficult for patients to obtain the desired information regarding modality and diagnosis because such information is subdivided when described on a website. Objective: The purpose of this study is to suggest a hospital website search behavior model by analyzing the browsing behavior model using a Bayesian network from the perspective of one-to-one marketing. Methods: First, we followed the website access log of Hokkaido University Hospital, which was collected from September 1, 2016, to August 31, 2017, and analyzed the access log using Google Analytics. Second, we specified the access records related to radiology from visitor browsing pages and keywords. Third, using these resources, we structured 3 Bayesian network models based on specific patient needs: radiotherapy, nuclear medicine examination, and radiological diagnosis. Analyzing each model, this study considered why some visitors could not reach their desired page and improvements to meet the needs of visitors seeking radiology-related information. Results: The radiotherapy model showed that 74% (67/90) of the target visitors could reach their requested page, but only 2% (2/90) could reach the Center page where inspection information, one of their requested pages, is posted. By analyzing the behavior of the visitors, we clarified that connecting with the radiotherapy and radiological diagnosis pages is useful for increasing the proportion of patients reaching their requested page. Conclusions: We proposed solutions for patient web-browsing accessibility based on a Bayesian network. Further analysis is necessary to verify the accuracy of the proposed model in comparison to other models. It is expected that information provided on hospital websites will be improved using this method. %M 33464211 %R 10.2196/14794 %U https://www.jmir.org/2021/1/e14794 %U https://doi.org/10.2196/14794 %U http://www.ncbi.nlm.nih.gov/pubmed/33464211 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 1 %P e22450 %T Online Pelvic Floor Group Education Program for Women With Persistent Genital Arousal Disorder/Genito-Pelvic Dysesthesia: Descriptive Feasibility Study %A Jackowich,Robyn A %A Mooney,Kayla M %A Hecht,Evelyn %A Pukall,Caroline F %+ Department of Psychology, Queen's University, 62 Arch Street, Humphrey Hall, Kingston, ON, K7L 3N6, Canada, 1 613 533 3200, caroline.pukall@queensu.ca %K persistent genital arousal disorder %K genitopelvic dysesthesia %K online program %K pelvic floor %K pilot %D 2021 %7 11.1.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Persistent genital arousal disorder/genito-pelvic dysesthesia (PGAD/GPD) is a highly distressing yet poorly understood condition characterized by persistent genito-pelvic sensations, often described as “genital arousal,” which occur in the absence of sexual desire. PGAD/GPD is associated with significant impairment in psychosocial and daily functioning; however, there are currently no empirically validated treatment algorithms for PGAD/GPD. Pelvic floor physical therapy exercises have been found to be effective at reducing other forms of genito-pelvic discomfort, such as vulvodynia, and may also be beneficial to those experiencing PGAD/GPD. Many individuals with PGAD/GPD report difficulty finding a health care provider who is knowledgeable about PGAD/GPD; therefore, pelvic floor education and exercises in an online format may have the potential to reach more individuals in need. Objective: This study examined the feasibility of an online pelvic floor group education program; descriptively assessed outcomes related to distress, discomfort, catastrophizing, and mood; and obtained feedback from participants in order to inform the development of improved online group programs. Methods: Fourteen women with current symptoms of PGAD/GPD attended an online, 8-session pelvic floor group education program. Participants completed questionnaires of symptoms (ie, symptom distress, discomfort) and psychosocial well-being (ie, depression, anxiety, symptom catastrophizing) prior to the group sessions (Time 1), immediately after the final group session (Time 2), and 6 months following the final group session (Time 3). Participants also completed an anonymous feedback questionnaire immediately following the group program. Results: Overall, participants who attended a larger number of the group sessions (>5 sessions, n=7) appeared to report lower baseline (Time 1) symptoms and psychosocial impairment than those who attended fewer sessions (<5 sessions, n=7). A pattern of small improvements was seen following the group sessions on symptom and psychosocial outcomes. In the feedback questionnaire, breathing and relaxation exercises were described to be the most helpful home practice exercises, and participants rated sessions on (1) the relationship between emotions and PGAD/GPD symptoms and (2) relaxation exercises to be the most helpful. A number of barriers to participation in the group program were also identified, including comorbid health concerns and lack of personal time to complete the program/exercises. Conclusions: Online interventions provide an opportunity to reach international participants who may otherwise struggle to access a knowledgeable provider for their PGAD/GPD symptoms. Addressing barriers may help to increase participants’ abilities to engage in the program. Future programs may seek to integrate a greater focus on relaxation strategies and cognitive-affective strategies for managing PGAD/GPD symptoms. %M 33427673 %R 10.2196/22450 %U http://formative.jmir.org/2021/1/e22450/ %U https://doi.org/10.2196/22450 %U http://www.ncbi.nlm.nih.gov/pubmed/33427673 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 6 %N 4 %P e25546 %T SARS-CoV-2 Testing Service Preferences of Adults in the United States: Discrete Choice Experiment %A Zimba,Rebecca %A Kulkarni,Sarah %A Berry,Amanda %A You,William %A Mirzayi,Chloe %A Westmoreland,Drew %A Parcesepe,Angela %A Waldron,Levi %A Rane,Madhura %A Kochhar,Shivani %A Robertson,McKaylee %A Maroko,Andrew %A Grov,Christian %A Nash,Denis %+ Institute for Implementation Science in Population Health, City University of New York, 55 W 125th St, 6th Floor, New York, NY, 10027, United States, 1 646 364 9618, rebecca.zimba@sph.cuny.edu %K COVID-19 %K SARS-CoV-2 %K discrete choice experiment %K implementation science %K engagement %K testing %K cohort study %K stated preference study %K pandemic %D 2020 %7 31.12.2020 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Ascertaining preferences for SARS-CoV-2 testing and incorporating findings into the design and implementation of strategies for delivering testing services may enhance testing uptake and engagement, a prerequisite to reducing onward transmission. Objective: This study aims to determine important drivers of decisions to obtain a SARS-CoV-2 test in the context of increasing community transmission. Methods: We used a discrete choice experiment to assess preferences for SARS-CoV-2 test type, specimen type, testing venue, and results turnaround time. Participants (n=4793) from the US national longitudinal Communities, Households and SARS-CoV-2 Epidemiology (CHASING) COVID Cohort Study completed our online survey from July 30 to September 8, 2020. We estimated the relative importance of testing method attributes and part-worth utilities of attribute levels, and simulated the uptake of an optimized testing scenario relative to the current typical testing scenario of polymerase chain reaction (PCR) via nasopharyngeal swab in a provider’s office or urgent care clinic with results in >5 days. Results: Test result turnaround time had the highest relative importance (30.4%), followed by test type (28.3%), specimen type (26.2%), and venue (15.0%). In simulations, immediate or same-day test results, both PCR and serology, or oral specimens substantially increased testing uptake over the current typical testing option. Simulated uptake of a hypothetical testing scenario of PCR and serology via a saliva sample at a pharmacy with same-day results was 97.7%, compared to 0.6% for the current typical testing scenario, with 1.8% opting for no test. Conclusions: Testing strategies that offer both PCR and serology with noninvasive methods and rapid turnaround time would likely have the most uptake and engagement among residents in communities with increasing community transmission of SARS-CoV-2. %M 33315584 %R 10.2196/25546 %U http://publichealth.jmir.org/2020/4/e25546/ %U https://doi.org/10.2196/25546 %U http://www.ncbi.nlm.nih.gov/pubmed/33315584 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 6 %N 2 %P e23668 %T The Quality of Instructional YouTube Videos for the Administration of Intranasal Spray: Observational Study %A Peters-Geven,Marije M %A Rollema,Corine %A Metting,Esther I %A van Roon,Eric N %A de Vries,Tjalling W %+ Department of Clinical Pharmacy and Pharmacology, Medical Centre Leeuwarden, Henri Dunantweg 2, PO Box 888, Leeuwarden, 8901 BR, Netherlands, 31 58 286 3385, corine.rollema@mcl.nl %K allergic rhinitis %K administration %K intranasal spray %K instruction videos %K nasal %K YouTube %K educational video %K corticosteroid %K allergic %K intranasal %K allergy %D 2020 %7 30.12.2020 %9 Original Paper %J JMIR Med Educ %G English %X Background: Allergic rhinitis is a common disorder affecting both children and adults. Recommended treatment consists of intranasal corticosteroid spray administration, but only few patients administer the nasal spray in the correct technical manner. A wrong administration technique may result in side effects and affect the efficacy and adherence, thus making accurate administration instructions indispensable. Unfortunately, information about intranasal drug administration is generally not explained accurately, thereby leading to confusion among patients and inaccuracy in the self-administration of drugs. Objective: In this study, we analyzed instructional videos available on YouTube for the administration of nasal sprays for allergic rhinitis. Our aim was to determine if the videos provided instructions in accordance with the standardized nationwide patient protocol in the Netherlands for intranasal spray administration. Methods: Instructional videos for the administration of aqueous formulations of nasal spray for allergic rhinitis were found on YouTube. All videos were reviewed by 2 researchers and scored using the instructions from the Dutch standardized protocol. Correct instructions were given a score of 1, while incorrect or missing instructions were given a score of 0. The interrater reliability using Cohen ĸ was used to determine the differences in the scores between the researchers. Results: We identified 33 YouTube videos made by different health care professionals and pharmaceutical companies around the world. None of the videos displayed all the steps correctly, while 5 of the 33 (15%) videos displayed over 75% of the steps correctly. The median score of the correctly displayed steps was 11 out of 19 (range 2-17, IQR 6). The interrater reliability using Cohen ĸ was statistically significant (range 0.872-1.00, P<.001). The steps “neutral position of the head,” “breathing out through the mouth,” and “periodically cleaning with water” scored the lowest and were incorrectly displayed in 28 (85%), 28 (85%), and 30 (91%) of the 33 videos, respectively. Conclusions: The findings of our study revealed that only few instructional videos on YouTube provided correct instructions for the administration of nasal sprays to patients. The inaccuracy of the instructions for nasal spray administration in the majority of the videos may lead to confusion in patients and incorrect use of nasal sprays. In the future, it is important to make evidence-based instructional videos that show patients the correct technique of nasal spray administration. Trial Registration: Not applicable %M 33377873 %R 10.2196/23668 %U http://mededu.jmir.org/2020/2/e23668/ %U https://doi.org/10.2196/23668 %U http://www.ncbi.nlm.nih.gov/pubmed/33377873 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 12 %P e22947 %T Integrated Digital Patient Education at the Bedside for Patients with Chronic Conditions: Observational Study %A Schooley,Benjamin %A Singh,Akanksha %A Hikmet,Neşet %A Brookshire,Robert %A Patel,Nitin %+ Health Information Technology Program, College of Engineering and Computing, University of South Carolina, 550 Assembly St, Columbia, SC, 29208, United States, 1 8937778223, bschooley@cec.sc.edu %K patient education %K patient understanding %K blended learning %K adherence %K digital patient education %K chronic condition %K understanding %K outcome %K mHealth %K education %K digital health %D 2020 %7 22.12.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Patient education delivered by a health care provider increases patients’ understanding and adherence to medical instructions, which helps to improve patient health. Multiple challenges exist to delivering effective patient education to patients with multiple chronic conditions, including giving the necessary time, range, and types of learning materials, and assessing the level of understanding. To help overcome these challenges, it is important to study new electronic means to assist in patient education, such as the use of mobile devices, interactive media, 3-dimensional images, and multimedia educational content at the bedside. Objective: The goal of this study was to address the need for blended learning strategies combining technical and workflow integration of digital patient education systems for patients with chronic conditions within and across the regular process of care. Studies are needed to evaluate the utility and benefits of these technologies for providers and patients alike. Methods: A mixed-methods approach was employed including survey administration to 178 patients after they received digital patient education in person with a health care provider, and qualitative interviews with 16 nurse educators who used the mobile digital health education technology to deliver instruction to patients. Patient survey data were analyzed using chi-square statistical tests. Qualitative interviews were analyzed for user acceptance and perceived value themes. Results: Patients who were counseled using a blended digital health education approach reported improved understanding of educational content (P=.034) and chronic health conditions (P<.001), were more motivated to care for themselves at home (P<.001), were more likely to say that they felt capable of making health care decisions with their doctors (P<.001) and on their own (P=.001), and were more likely to report their intention to follow their doctor’s instructions (P<.001) than were patients whose education was not computer-based. Nurse educators felt that the digital education system and content enhanced their education efforts and could be easily integrated into the outpatient clinical workflow. Conclusions: Patient education for individuals with chronic conditions may be more effective than traditional formats when provided in blended digital formats supervised by a health care provider. %M 33350961 %R 10.2196/22947 %U http://mhealth.jmir.org/2020/12/e22947/ %U https://doi.org/10.2196/22947 %U http://www.ncbi.nlm.nih.gov/pubmed/33350961 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 12 %P e21772 %T An Autonomy-Supportive Online Decision Aid to Assist Smokers in Choosing Evidence-Based Cessation Assistance: Development Process and Protocol of a Randomized Controlled Trial %A Gültzow,Thomas %A Smit,Eline Suzanne %A Hudales,Raesita %A Knapen,Vera %A Rademakers,Jany %A Dirksen,Carmen D %A Hoving,Ciska %+ Department of Health Promotion, Care and Public Health Research Institute, Maastricht University, P O Box 616, Maastricht, 6200 MD, Netherlands, 31 433882402, thomas.gultzow@maastrichtuniversity.nl %K digital health %K decision making %K decision support technique %K decision aids %K smoking %K smoking cessation %K informed decision making %D 2020 %7 15.12.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Decision aids (DAs) may be used to facilitate an autonomous, informed decision to cease smoking and promote the uptake of evidence-based cessation assistance (ie, behavioral support, nicotine replacement therapy, or prescription medication). However, knowledge is lacking regarding their effective elements and (cost-)effectiveness. Objective: We describe the development process of an online DA (called “VISOR”) that helps smokers to choose evidence-based cessation assistance. Additionally, we provide a description of the protocol of an ongoing randomized controlled trial in which the DA containing an explicit value clarification method (VCM) and tailored advice is compared with a DA without an explicit VCM and tailored advice. Methods: The development of “VISOR” was based on the International Patient Decision Aid Standards guidelines. Viewpoints of end users (collected through 20 interviews with smokers) and clinical and scientific experts (assessed using 2 Delphi studies with 24 scientists and 38 clinicians) were assessed regarding cessation tool decision making and preferred DA content. These findings, together with principles from the Self-Determination Theory, served as input for the development of the online DA. A first DA prototype was alpha-tested in September 2019 and beta-tested for usability in December 2019; feedback was incorporated and resulted in a final version. The final DA contains (1) an information section, (2) an optional knowledge quiz, (3) a brief smoking assessment, (4) intuitive decision, (5) intermediate advice, (6) an explicit VCM, (7) tailored advice, and (8) access information. A randomized controlled trial is currently being conducted to assess the DA’s (cost-)effectiveness compared to a DA that does not include the explicit VCM and the tailored advice; specifically, the DA’s effect on smoking abstinence, uptake of evidence-based cessation assistance, smoking abstinence mediated through uptake of evidence-based cessation assistance, and decisional conflict are investigated. Participants are randomly allocated to receive access to 1 of the 2 DAs and are asked to complete 5 questionnaires (including the baseline questionnaire) over a period of 12 months. To evaluate the effects of the DA on the outcome measures, logistic and linear regression analyses as well as mediation analyses will be carried out. An economic evaluation will be performed to assess the cost-effectiveness. Results: Data regarding the effect of the VISOR DA are currently being collected, and data collection is expected to be concluded in 2021. Conclusions: By making use of an iterative process that integrated different stakeholders’ perspectives (including end users), we were able to systematically design an evidence-based DA. The study will contribute to the current knowledge regarding smoking cessation DA application, the added value of explicit VCMs, and the effect of behavioral and informed decision-making outcomes. Trial Registration: Netherlands Trial Register NL8270; https://www.trialregister.nl/trial/8270 International Registered Report Identifier (IRRID): DERR1-10.2196/21772 %M 33320096 %R 10.2196/21772 %U http://www.researchprotocols.org/2020/12/e21772/ %U https://doi.org/10.2196/21772 %U http://www.ncbi.nlm.nih.gov/pubmed/33320096 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 12 %N 4 %P e23860 %T Does a Pandemic Preempt Participatory Medicine? %A Millenson,Michael Louis %+ Health Quality Advisors LLC, Highland Park, IL, United States, michael@healthqualityadvisors.com %K participatory medicine %K COVID-19 %K pandemic %K Fitbit %K DETECT study, Body Politic %K wearables %K sensors %K patient-generated health data %K shared decision making %D 2020 %7 14.12.2020 %9 Patient Perspectives %J J Participat Med %G English %X For those of us who believe deeply in a collaborative relationship between patients and doctors, the chaos created by the COVID-19 pandemic has brought an uncomfortable question to the fore: Is participatory medicine still relevant during a pandemic? Drawing liberally upon the Jewish tradition of Talmudic reasoning, I would like to offer 3 considered replies: “Yes,” “no,” and “it depends.” Sometimes, patients may have no choice but to cede control to medical professionals, even though patients are still the experts on their own lives. Other times, the shared control of participatory medicine is both an ethical and clinical imperative. However, as the worldwide toll exacted by COVID-19 has made us grimly aware, no one is really in control. That is why, in these uncertain times, the path forward requires maintaining mutual trust between health care providers and patients, whatever the circumstances. After all, it is our bodies and our selves at stake. %M 33157521 %R 10.2196/23860 %U http://jopm.jmir.org/2020/4/e23860/ %U https://doi.org/10.2196/23860 %U http://www.ncbi.nlm.nih.gov/pubmed/33157521 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 12 %P e17899 %T Potential Benefits of Multimedia-Based Home Catheter Management Education in Patients With Peripherally Inserted Central Catheters: Systematic Review %A Malale,Kija %A Fu,Jili %A Nelson,William %A Gemuhay,Helena Marco %A Gan,Xiuni %A Mei,Zhechuan %+ Department of Nursing, The Second Affiliated Hospital of Chongqing Medical University, 76, Linjiang Road, Yuzhong District, Chongqing, 400010, China, 86 138 83309318, ganxn@163.com %K home catheter management %K multimedia-based education %K peripherally inserted central catheter %D 2020 %7 10.12.2020 %9 Review %J J Med Internet Res %G English %X Background: In recent years, there have been many suggestions to use multimedia as a strategy to fully meet the educational needs of patients with peripherally inserted central catheters. However, the potential benefits remain unreliable in the literature. Objective: In this study, we identified the potential benefits of multimedia-based home catheter management education in patients with peripherally inserted central catheters and discussed the clinical implications. Methods: We performed systematic searches of the PubMed, Cochrane Library, Embase Ovid, Medline, BioMed Central-cancer (BMC-cancer), ScienceDirect, and Google Scholar databases without date constraints until November 30, 2019. The methodological quality of the eligible studies was appraised using the Cochrane risk of bias tool. Narrative synthesis of the study findings was conducted. Results: A total of 6 intervention studies met the inclusion criteria, including 3 randomized controlled trials and 3 case-control studies/quasi-experimental studies. The studies included a total of 355 subjects, including a total of 175 in the multimedia groups and 180 in the control groups. We identified 4 potential benefits to patients: (1) improved knowledge, (2) increased satisfaction, (3) reduced incidence of catheter-related complications, and (4) reduced number of cases of delayed care after complications. Conclusions: The current systematic review highlights the potential benefits of multimedia-based home catheter management education for patients with peripherally inserted central catheters. %M 33300884 %R 10.2196/17899 %U http://www.jmir.org/2020/12/e17899/ %U https://doi.org/10.2196/17899 %U http://www.ncbi.nlm.nih.gov/pubmed/33300884 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 12 %P e18316 %T eHealth Delivery of Educational Content Using Selected Visual Methods to Improve Health Literacy on Lifestyle-Related Diseases: Literature Review %A Aida,Azusa %A Svensson,Thomas %A Svensson,Akiko Kishi %A Chung,Ung-Il %A Yamauchi,Toshimasa %+ Precision Health, Department of Bioengineering, Graduate School of Engineering, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-8656, Japan, 81 358414737, thomas.svensson@med.lu.se %K application %K educational %K eHealth %K health literacy %K lifestyle-related disease %K mHealth %K review %D 2020 %7 9.12.2020 %9 Review %J JMIR Mhealth Uhealth %G English %X Background: Lifestyle-related diseases, such as stroke, heart disease, and diabetes, are examples of noncommunicable diseases. Noncommunicable diseases are now the leading cause of death in the world, and their major causes are lifestyle related. The number of eHealth interventions is increasing, which is expected to improve individuals’ health literacy on lifestyle-related diseases. Objective: This literature review aims to identify existing literature published in the past decade on eHealth interventions aimed at improving health literacy on lifestyle-related diseases among the general population using selected visual methods, such as educational videos, films, and movies. Methods: A systematic literature search of the PubMed database was conducted in April 2019 for papers written in English and published from April 2, 2009, through April 2, 2019. A total of 538 papers were identified and screened in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram. Finally, 23 papers were included in this review. Results: The 23 papers were characterized according to study characteristics (author and year of publication, study design and region where the study was conducted, study objective, service platform, target disease and participant age, research period, outcomes, and research method); the playback time of the educational videos, films, and movies; and the evaluation of the study’s impacts on health literacy. A total of 7 studies compared results using statistical methods. Of these, 5 studies reported significant positive effects of the intervention on health literacy and health-related measures (eg, physical activity, body weight). Although most of the studies included educational content aimed at improving health literacy, only 7 studies measured health literacy. In addition, only 5 studies assessed literacy using health literacy measurement tools. Conclusions: This review found that the provision of educational content was satisfactory in most eHealth studies using selected visual methods, such as videos, films, and movies. These findings suggest that eHealth interventions influence people’s health behaviors and that the need for this intervention is expected to increase. Despite the need to develop eHealth interventions, standardized measurement tools to evaluate health literacy are lacking. Further research is required to clarify acceptable health literacy measurements. %M 33295296 %R 10.2196/18316 %U http://mhealth.jmir.org/2020/12/e18316/ %U https://doi.org/10.2196/18316 %U http://www.ncbi.nlm.nih.gov/pubmed/33295296 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 2 %P e17771 %T Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads %A Garg,Ria %A Rebić,Nevena %A De Vera,Mary A %+ Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 Wesbrook Mall, Vancouver, BC, Canada, 1 604 207 040, mdevera@mail.ubc.ca %K cancer treatment %K health information %K oncofertility %K fertility %K pregnancy %K reproduction %K social support %D 2020 %7 2.12.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: A reproductive health implication of the increasing incidence of cancer among women is the impact of cancer treatment on fertility. Objective: As patients are increasingly using the internet, particularly online forums, to seek and share experiences, our objective was to understand information needs about cancer treatment, fertility, and pregnancy of women with cancer as well as their caregivers. Methods: We searched threads (original posts and responses) on four subreddit sites of Reddit (“r/Cancer,” “r/TryingForABaby,” “r/BabyBumps,” and “r/Infertility”) over a 5‐year period between February 4th, 2014 and February 4th, 2019. Threads with original posts involving a lived experience or question regarding cancer treatment and female fertility and/or pregnancy or parenting/having children from the perspective of either patient or caregiver were included in our analysis. We analyzed threads using thematic analysis. Results: From 963 Reddit threads identified, 69 were analyzed, including 56 with original posts by women with cancer and 13 with original posts by caregivers. From threads made by patients, we identified themes on becoming a part of an online community, impacts of cancer treatment and fertility concerns on self and social relationships, making family planning decisions, and experiences with medical team. We also identified a theme on the impact of cancer treatment and fertility concerns on caregivers. Conclusions: Reddit provided a rich pool of data for analyzing the information needs of women facing cancer. Our findings demonstrate the far-reaching impacts of cancer treatment and fertility on physical, mental, and psychosocial health for both patients and their caregivers. %M 33263547 %R 10.2196/17771 %U http://cancer.jmir.org/2020/2/e17771/ %U https://doi.org/10.2196/17771 %U http://www.ncbi.nlm.nih.gov/pubmed/33263547 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 12 %P e22765 %T Comparing Precision Machine Learning With Consumer, Quality, and Volume Metrics for Ranking Orthopedic Surgery Hospitals: Retrospective Study %A Goyal,Dev %A Guttag,John %A Syed,Zeeshan %A Mehta,Rudra %A Elahi,Zahoor %A Saeed,Mohammed %+ Department of Internal Medicine, University of Michigan, 1500 East Medical Center Drive, Ann Arbor, MI, 48109, United States, 1 6176421280, msaeed@umich.edu %K machine learning %K hospital ratings %K precision delivery %K hospital %K surgery %K outcome %K perioperative %K internet %K reputation %K machine learning %D 2020 %7 1.12.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Patients’ choices of providers when undergoing elective surgeries significantly impact both perioperative outcomes and costs. There exist a variety of approaches that are available to patients for evaluating between different hospital choices. Objective: This paper aims to compare differences in outcomes and costs between hospitals ranked using popular internet-based consumer ratings, quality stars, reputation rankings, average volumes, average outcomes, and precision machine learning–based rankings for hospital settings performing hip replacements in a large metropolitan area. Methods: Retrospective data from 4192 hip replacement surgeries among Medicare beneficiaries in 2018 in a the Chicago metropolitan area were analyzed for variations in outcomes (90-day postprocedure hospitalizations and emergency department visits) and costs (90-day total cost of care) between hospitals ranked through multiple approaches: internet-based consumer ratings, quality stars, reputation rankings, average yearly surgical volume, average outcome rates, and machine learning–based rankings. The average rates of outcomes and costs were compared between the patients who underwent surgery at a hospital using each ranking approach in unadjusted and propensity-based adjusted comparisons. Results: Only a minority of patients (1159/4192, 27.6% to 2078/4192, 49.6%) were found to be matched to higher-ranked hospitals for each of the different approaches. Of the approaches considered, hip replacements at hospitals that were more highly ranked by consumer ratings, quality stars, and machine learning were all consistently associated with improvements in outcomes and costs in both adjusted and unadjusted analyses. The improvement was greatest across all metrics and analyses for machine learning–based rankings. Conclusions: There may be a substantive opportunity to increase the number of patients matched to appropriate hospitals across a broad variety of ranking approaches. Elective hip replacement surgeries performed at hospitals where patients were matched based on patient-specific machine learning were associated with better outcomes and lower total costs of care. %M 33258459 %R 10.2196/22765 %U https://www.jmir.org/2020/12/e22765 %U https://doi.org/10.2196/22765 %U http://www.ncbi.nlm.nih.gov/pubmed/33258459 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 11 %P e22440 %T Outcomes of Equity-Oriented, Web-Based Parenting Information in Mothers of Low Socioeconomic Status Compared to Other Mothers: Participatory Mixed Methods Study %A Pluye,Pierre %A El Sherif,Reem %A Gonzalez-Reyes,Araceli %A Turcotte,Emmanuelle %A Schuster,Tibor %A Bartlett,Gillian %A Grad,Roland M %A Granikov,Vera %A Barwick,Melanie %A Doray,Geneviève %A Lagarde,François %A Loignon,Christine %+ Department of Family Medicine, McGill University, 5858 Cote des neiges, Rm 300, Montreal, QC, H3S 1Z1, Canada, 1 514 398 8483, pierre.pluye@mcgill.ca %K consumer health information %K child development %K child health %K literacy %K information outcomes %D 2020 %7 10.11.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Typically, web-based consumer health information is considered more beneficial for people with high levels of education and income. No evidence shows that equity-oriented information offers equal benefits to all. This is important for parents of low socioeconomic status (SES; low levels of education and income and usually a low level of literacy). Objective: This study is based on a conceptual framework of information outcomes. In light of this, it aims to compare the perception of the outcomes of web-based parenting information in low-SES mothers with that of other mothers and explore the perspective of low-SES mothers on contextual factors and information needs and behavior associated with these outcomes. Methods: A participatory mixed methods research was conducted in partnership with academic researchers and Naître et grandir (N&G) editors. N&G is a magazine, website, and newsletter that offers trustworthy parenting information on child development, education, health, and well-being in a format that is easy to read, listen, or watch. Quantitative component (QUAN) included a 3-year longitudinal observational web survey; participants were mothers of 0- to 8-year-old children. For each N&G newsletter, the participants’ perception regarding the outcomes of specific N&G webpages was gathered using a content-validated Information Assessment Method (IAM) questionnaire. Differences between participants of low SES versus others were estimated. Qualitative component (QUAL) was interpretive; participants were low-SES mothers. The thematic analysis of interview transcripts identified participants’ characteristics and different sources of information depending on information needs. Findings from the two components were integrated (QUAN+QUAL integration) through the conceptual framework and assimilated into the description of an ideal-typical mother of low SES (Kate). A narrative describes Kate’s perception of the outcomes of web-based parenting information and her perspective on contextual factors, information needs, and behavior associated with these outcomes. Results: QUAN—a total of 1889 participants completed 2447 IAM responses (50 from mothers of low SES and 2397 from other mothers). N&G information was more likely to help low-SES participants to better understand something, decrease worries, and increase self-confidence in decision making. QUAL—the 40 participants (21 N&G users and 19 nonusers) used 4 information sources in an iterative manner: websites, forums, relatives, and professionals. The integration of QUAN and QUAL findings provides a short narrative, Kate, which summarizes the main findings. Conclusions: This is the first study comparing perceptions of information outcomes in low-SES mothers with those of other mothers. Findings suggest that equity-oriented, web-based parenting information can offer equal benefits to all, including low-SES mothers. The short narrative, Kate, can be quickly read by decision policy makers, for example, web editors, and might encourage them to reach the underserved and provide and assess trustworthy web-based consumer health information in a format that is easy to read, listen, or watch. %M 33170125 %R 10.2196/22440 %U https://www.jmir.org/2020/11/e22440 %U https://doi.org/10.2196/22440 %U http://www.ncbi.nlm.nih.gov/pubmed/33170125 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 11 %P e19953 %T Effect of a Text Messaging–Based Educational Intervention on Cesarean Section Rates Among Pregnant Women in China: Quasirandomized Controlled Trial %A Su,Yanfang %A Heitner,Jesse %A Yuan,Changzheng %A Si,Yafei %A Wang,Dan %A Zhou,Zhiying %A Zhou,Zhongliang %+ School of Public Policy and Administration, Xi’an Jiaotong University, 28# Xianning West Road, Xi'an, China, 86 18291498261, zzliang1981@xjtu.edu.cn %K cesarean section %K short message service %K SMS text messaging %K quasirandomized controlled trial %K mobile health %D 2020 %7 3.11.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Consensus exists that appropriate regional cesarean rates should not exceed 15% of births, but China’s cesarean rate exceeds 50% in some areas, prompting numerous calls for its reduction. At present, China’s 2016 two-child policy has heightened the implications of national cesarean section trends. Objective: This study leveraged pervasive cellular phone access amongst Chinese citizens to test the effect of a low-cost and scalable prenatal advice program on cesarean section rates. Methods: Participants were pregnant women presenting for antenatal care at a clinic in Xi’an, China. Assignment was quasirandomized and utilized factorial assignment based on the expecting mother’s birthday. Participants were assigned to one of the following four groups, with each receiving a different set of messages: (1) a comparison group that received only a few “basic” messages, (2) a group receiving messages primarily regarding care seeking, (3) a group receiving messages primarily regarding good home prenatal practices, and (4) a group receiving text messages of all groups. Messages were delivered throughout pregnancy and were tailored to each woman’s gestational week. The main outcome was the rates of cesarean delivery reported in the intervention arms. Data analysts were blinded to treatment assignment. Results: In total, 2115 women completed the trial and corresponding follow-up surveys. In the unadjusted analysis, the group receiving all texts was associated with an odds ratio of 0.77 (P=.06), though neither the care seeking nor good home prenatal practice set yielded a relevant impact. Adjusting for potentially confounding covariates showed that the group with all texts sent together was associated with an odds ratio of 0.67 (P=.01). Notably, previous cesarean section evoked an odds ratio of 11.78 (P<.001), highlighting that having a cesarean section predicts future cesarean section in a subsequent pregnancy. Conclusions: Sending pregnant women in rural China short informational messages with integrated advice regarding both care-seeking and good home prenatal practices appears to reduce women’s likelihood of undergoing cesarean section. Reducing clear medical indications for cesarean section seems to be the strongest potential pathway of the effect. Cesarean section based on only maternal request did not seem to occur regularly in our study population. Preventing unnecessary cesarean section at present may have a long-term impact on future cesarean section rates. Trial Registration: ClinicalTrials.gov NCT02037087; https://clinicaltrials.gov/ct2/show/NCT02037087. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2015-011016 %M 33141099 %R 10.2196/19953 %U https://mhealth.jmir.org/2020/11/e19953 %U https://doi.org/10.2196/19953 %U http://www.ncbi.nlm.nih.gov/pubmed/33141099 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 9 %N 4 %P e23519 %T Carotid Endarterectomy Versus Carotid Artery Stenting: Survey of the Quality, Readability, and Treatment Preference of Carotid Artery Disease Websites %A Strauss,Shira %A Yacob,Michael %A Bhandari,Apoorva %A Jetty,Prasad %+ Division of Vascular Surgery, Queen's University, 76 Stuart St, Victory 3, Kingston, ON, K7L 2V7, Canada, 1 6135482573, michaelyacob@gmail.com %K patient information %K carotid artery disease %K carotid endarterectomy %K carotid stenting %K carotid stenosis %K carotid surgery %K Google %K quality %K readability %K treatment %K preference %K online health information %D 2020 %7 3.11.2020 %9 Original Paper %J Interact J Med Res %G English %X Background: The internet is becoming increasingly more important in the new era of patient self-education. Carotid endarterectomy (CEA) and carotid artery stenting (CAS) are recognized interventions to treat patients with carotid artery stenosis. Using the Google search platform, patients encounter many websites with conflicting information, which are sometimes difficult to understand. This lack of accessibility creates uncertainty or bias toward interventions for carotid artery disease. The quality, readability, and treatment preference of carotid artery disease (CAD) websites have not yet been evaluated. Objective: This study aimed to explore the quality, readability, and treatment preference of CAD websites. Methods: We searched Google Canada for 10 CAD-related keywords. Returned links were assessed for publication date, medical specialty and industry affiliation, presence of randomized controlled trial data, differentiation by symptomatic status, and favored treatment. Website quality and readability were rated by the DISCERN instrument and Gunning Fog Index. Results: We identified 54 unique sites: 18 (33.3%) by medical societies or individual physicians, 11 (20.4%) by government organizations, 9 (16.7%) by laypersons, and 1 (1.9%) that was industry-sponsored. Of these sites, 26 (48.1%) distinguished symptomatic from asymptomatic CAD. A majority of sites overall (57.4%) and vascular-affiliated (72.7%) favored CEA. In contrast, radiology- and cardiology-affiliated sites demonstrated the highest proportion of sites favoring CAS, though they were equally likely to favor CEA. A large proportion (21/54, 38.9%) of sites received poor quality ratings (total DISCERN score <48), and the majority (41/54, 75.9%) required a reading level greater than a high school senior. Conclusions: CAD websites are often produced by government organizations, medical societies, or physicians, especially vascular surgeons. Sites ranged in quality, readability, and differentiation by symptomatic status. Google searches of CAD-related terms are more likely to yield sites favoring CEA. Future research should determine the extent of website influence on CAD patients’ treatment decisions. %M 33141097 %R 10.2196/23519 %U http://www.i-jmr.org/2020/4/e23519/ %U https://doi.org/10.2196/23519 %U http://www.ncbi.nlm.nih.gov/pubmed/33141097 %0 Journal Article %@ 2562-7600 %I JMIR Publications %V 3 %N 1 %P e20747 %T Effect of a Smartphone-Based App on the Quality of Life of Patients With Heart Failure: Randomized Controlled Trial %A Davoudi,Mahboube %A Najafi Ghezeljeh,Tahereh %A Vakilian Aghouee,Farveh %+ Nursing Care Research Center, Iran University of Medical Sciences, School of Nursing and Midwifery, Yasem Street, Valiasr Street, Tehran, 1996713883, Iran, 98 43651608 ext 021, najafi.t@iums.ac.ir %K heart failure %K mobile app %K quality of life %K mobile phone %D 2020 %7 2.11.2020 %9 Original Paper %J JMIR Nursing %G English %X Background: Patients with heart failure have low quality of life because of physical impairments and advanced clinical symptoms. One of the main goals of caring for patients with heart failure is to improve their quality of life. Objective: The aim of this study was to investigate the effect of the use of a smartphone-based app on the quality of life of patients with heart failure. Methods: This randomized controlled clinical trial with a control group was conducted from June to October 2018 in an urban hospital. In this study, 120 patients with heart failure hospitalized in cardiac care units were randomly allocated to control and intervention groups. Besides routine care, patients in the intervention group received a smartphone-based app and used it every day for 3 months. Both the groups completed the Minnesota Living with Heart Failure Questionnaire before entering the study and at 3 months after entering the study. Data were analyzed using the SPSS software V.16. Results: The groups showed statistically significant differences in the mean scores of quality of life and its dimensions after the intervention, thereby indicating a better quality of life in the intervention group (P<.001). The effect size of the intervention on the quality of life was 1.85 (95% CI 1.41-2.3). Moreover, the groups showed statistically significant differences in the changes in the quality of life scores and its dimensions (P<.001). Conclusions: Use of a smartphone-based app can improve the quality of life in patients with heart failure. The results of our study recommend that digital apps be used for improving the management of patients with heart failure. Trial Registration: Iranian Registry of Clinical Trials IRCT2017061934647N1; https://www.irct.ir/trial/26434 %M 34406971 %R 10.2196/20747 %U https://nursing.jmir.org/2020/1/e20747 %U https://doi.org/10.2196/20747 %U http://www.ncbi.nlm.nih.gov/pubmed/34406971 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e20113 %T A Web Application About Herd Immunity Using Personalized Avatars: Development Study %A Hakim,Hina %A Bettinger,Julie A %A Chambers,Christine T %A Driedger,S Michelle %A Dubé,Eve %A Gavaruzzi,Teresa %A Giguere,Anik M C %A Kavanagh,Éric %A Leask,Julie %A MacDonald,Shannon E %A Orji,Rita %A Parent,Elizabeth %A Paquette,Jean-Sébastien %A Roberge,Jacynthe %A Sander,Beate %A Scherer,Aaron M %A Tremblay-Breault,Martin %A Wilson,Kumanan %A Reinharz,Daniel %A Witteman,Holly O %+ Department of Family and Emergency Medicine, Laval University, 1050 avenue de la Médecine, Pavillon Ferdinand-Vandry 2881, Université Laval, Quebec City, QC, G1V 0A6, Canada, 1 418 656 2131 ext 3981, holly.witteman@fmed.ulaval.ca %K community immunity %K herd immunity %K vaccination %K vaccine hesitancy %K avatar %K web application %D 2020 %7 30.10.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Herd immunity or community immunity refers to the reduced risk of infection among susceptible individuals in a population through the presence and proximity of immune individuals. Recent studies suggest that improving the understanding of community immunity may increase intentions to get vaccinated. Objective: This study aims to design a web application about community immunity and optimize it based on users’ cognitive and emotional responses. Methods: Our multidisciplinary team developed a web application about community immunity to communicate epidemiological evidence in a personalized way. In our application, people build their own community by creating an avatar representing themselves and 8 other avatars representing people around them, for example, their family or coworkers. The application integrates these avatars in a 2-min visualization showing how different parameters (eg, vaccine coverage, and contact within communities) influence community immunity. We predefined communication goals, created prototype visualizations, and tested four iterative versions of our visualization in a university-based human-computer interaction laboratory and community-based settings (a cafeteria, two shopping malls, and a public library). Data included psychophysiological measures (eye tracking, galvanic skin response, facial emotion recognition, and electroencephalogram) to assess participants’ cognitive and affective responses to the visualization and verbal feedback to assess their interpretations of the visualization’s content and messaging. Results: Among 110 participants across all four cycles, 68 (61.8%) were women and 38 (34.5%) were men (4/110, 3.6%; not reported), with a mean age of 38 (SD 17) years. More than half (65/110, 59.0%) of participants reported having a university-level education. Iterative changes across the cycles included adding the ability for users to create their own avatars, specific signals about who was represented by the different avatars, using color and movement to indicate protection or lack of protection from infectious disease, and changes to terminology to ensure clarity for people with varying educational backgrounds. Overall, we observed 3 generalizable findings. First, visualization does indeed appear to be a promising medium for conveying what community immunity is and how it works. Second, by involving multiple users in an iterative design process, it is possible to create a short and simple visualization that clearly conveys a complex topic. Finally, evaluating users’ emotional responses during the design process, in addition to their cognitive responses, offers insights that help inform the final design of an intervention. Conclusions: Visualization with personalized avatars may help people understand their individual roles in population health. Our app showed promise as a method of communicating the relationship between individual behavior and community health. The next steps will include assessing the effects of the application on risk perception, knowledge, and vaccination intentions in a randomized controlled trial. This study offers a potential road map for designing health communication materials for complex topics such as community immunity. %M 33124994 %R 10.2196/20113 %U https://www.jmir.org/2020/10/e20113 %U https://doi.org/10.2196/20113 %U http://www.ncbi.nlm.nih.gov/pubmed/33124994 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e20510 %T Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory %A Thiessen,Maclean %A Sinclair,Shane %A Tang,Patricia A %A Raffin Bouchal,Shelley %+ Research Institute in Oncology and Hematology, CancerCare Manitoba, 675 McDermot Avenue, Winnipeg, MB, R3E 0V9, Canada, 1 2047878776, macthiessen@gmail.com %K persons %K personal autonomy %K patient-centered care %K health education %K health information–seeking behavior %K grounded theory %K empowerment %K cancer %K qualitative research %K adaptation, psychological %K mobile phone %D 2020 %7 29.10.2020 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 33118940 %R 10.2196/20510 %U http://www.jmir.org/2020/10/e20510/ %U https://doi.org/10.2196/20510 %U http://www.ncbi.nlm.nih.gov/pubmed/33118940 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 10 %P e20308 %T App-Delivered Self-Management Intervention Trial selfBACK for People With Low Back Pain: Protocol for Implementation and Process Evaluation %A Rasmussen,Charlotte Diana Nørregaard %A Svendsen,Malene Jagd %A Wood,Karen %A Nicholl,Barbara I %A Mair,Frances S %A Sandal,Louise Fleng %A Mork,Paul Jarle %A Søgaard,Karen %A Bach,Kerstin %A Stochkendahl,Mette Jensen %+ National Research Centre for the Working Environment, Lersø Parkalle 105, Copenhagen, , Denmark, 45 39165466, cnr@nfa.dk %K randomized controlled trial %K implementation %K process evaluation %K low back pain %K digital health intervention %K mHealth %K decision support system %K RE-AIM %D 2020 %7 29.10.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Implementation and process evaluation is vital for understanding how interventions function in different settings, including if and why interventions have different effects or do not work at all. Objective: This paper presents the protocol for an implementation and process evaluation embedded in a multicenter randomized controlled trial conducted in Denmark and Norway (the selfBACK project). selfBACK is a data-driven decision support system that provides participants with weekly self-management plans for low back pain. These plans are delivered through a smartphone app and tailored to individual participants by using case-based reasoning methodology. In the trial, we compare selfBACK in addition to usual care with usual care alone. Methods: The aim of this study is to conduct a convergent mixed-methods implementation and process evaluation of the selfBACK app by following the reach, effectiveness, adoption, implementation, and maintenance framework. We will evaluate the process of implementing selfBACK and investigate how participants use the intervention in daily life. The evaluation will also cover the reach of the intervention, health care provider willingness to adopt it, and participant satisfaction with the intervention. We will gather quantitative measures by questionnaires and measures of data analytics on app use and perform a qualitative exploration of the implementation using semistructured interviews theoretically informed by normalization process theory. Data collection will be conducted between March 2019 and October 2020. Results: The trial opened for recruitment in February 2019. This mixed-methods implementation and evaluation study is embedded in the randomized controlled trial and will be collecting data from March 2019 to October 2020; dissemination of trial results is planned thereafter. The results from the process evaluation are expected 2021-2022. Conclusions: This study will provide a detailed understanding of how self-management of low back pain can be improved and how a digital health intervention can be used as an add-on to usual care to support patients to self-manage their low back pain. We will provide knowledge that can be used to explore the possibilities of extending the generic components of the selfBACK system and key drivers that could be of use in other conditions and diseases where self-management is an essential prevention or treatment strategy. Trial Registration: ClinicalTrials.gov NCT03798288; https://www.clinicaltrials.gov/ct2/show/NCT03798288 International Registered Report Identifier (IRRID): DERR1-10.2196/20308 %M 33118959 %R 10.2196/20308 %U http://www.researchprotocols.org/2020/10/e20308/ %U https://doi.org/10.2196/20308 %U http://www.ncbi.nlm.nih.gov/pubmed/33118959 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 10 %P e17878 %T Web-Based Training for Nurses on Shared Decision Making and Prenatal Screening for Down Syndrome: Protocol for a Randomized Controlled Trial %A Poulin Herron,Alex %A Agbadje,Titilayo Tatiana %A Cote,Melissa %A Djade,Codjo Djignefa %A Roch,Geneviève %A Rousseau,Francois %A Légaré,France %+ Canada Research Chair in Shared Decision Making and Knowledge Translation, Université Laval, Pavillon Landry-Poulin, door A-1-2, room A-4574, 2525, chemin de la Canardière, Québec, QC, G1J 0A4, Canada, 1 418 663 5713, France.Legare@fmed.ulaval.ca %K shared decision making %K prenatal screening %K training %K nurses %K behavioral intention %K Down syndrome %K continuing professional development %D 2020 %7 29.10.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Pregnant women often find it difficult to choose from among the wide variety of available prenatal screening options. To help pregnant women and their partners make informed decisions based on their values, needs, and preferences, a decision aid and a web-based shared decision making (SDM) training program for health professionals have been developed. In Canada, nurses provide maternity care and thus can train as decision coaches for prenatal screening. However, there is a knowledge gap about the effectiveness of SDM interventions in maternity care in nursing practice. Objective: This study aims to assess the impact of an SDM training program on nurses’ intentions to use a decision aid for prenatal screening and on their knowledge and to assess their overall impressions of the training. Methods: This is a 2-arm parallel randomized trial. French-speaking nurses working with pregnant women in the province of Quebec were recruited online by a private survey firm. They were randomly allocated (1:1 ratio) to either an experimental group, which completed a web-based SDM training program that included prenatal screening, or a control group, which completed a web-based training program focusing on prenatal screening alone. The experimental intervention consisted of a 3-hour web-based training hosted on the Université Laval platform with 4 modules: (1) SDM; (2) Down syndrome prenatal screening; (3) decision aids; and (4) communication between health care professionals and the patient. For the control group, the topic of SDM in Module 1 was replaced with “Context and history of prenatal screening,” and the topic of decision aids in Module 3 was replaced with “Consent in prenatal screening.” Participants completed a self-administered sociodemographic questionnaire with close-ended questions. We also assessed the participants' (1) intention to use a decision aid in prenatal screening clinical practice, (2) knowledge, (3) satisfaction with the training, (4) acceptability, and (5) perceived usefulness of the training. The randomization was done using a predetermined sequence and included 40 nurses. Participants and researchers were blinded. Intention to use a decision aid will be assessed by a t test. Bivariate and multivariate analysis will be performed to assess knowledge and overall impressions of the training. Results: This study was funded in 2017 and approved by Genome Canada. Data were collected from September 2019 to late January 2020. This paper was initially submitted before data analysis began. Results are expected to be published in winter 2020. Conclusions: Study results will inform us on the impact of an SDM training program on nurses’ intention to use and knowledge of decision aids for prenatal screening and their overall impressions of the training. Participant feedback will also inform an upgrade of the program, if needed. Trial Registration: ClinicalTrials.gov NCT04162288; https://clinicaltrials.gov/ct2/show/NCT04162288 International Registered Report Identifier (IRRID): DERR1-10.2196/17878 %M 33118955 %R 10.2196/17878 %U http://www.researchprotocols.org/2020/10/e17878/ %U https://doi.org/10.2196/17878 %U http://www.ncbi.nlm.nih.gov/pubmed/33118955 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 10 %P e22069 %T Smartphone-Enabled, Telehealth-Based Family Conferences in Palliative Care During the COVID-19 Pandemic: Pilot Observational Study %A Wu,Yu-Rui %A Chou,Tzu-Jung %A Wang,Yi-Jen %A Tsai,Jaw-Shiun %A Cheng,Shao-Yi %A Yao,Chien-An %A Peng,Jen-Kuei %A Hu,Wen-Yu %A Chiu,Tai-Yuan %A Huang,Hsien-Liang %+ Department of Family Medicine, National Taiwan University Hospital, 7 Chung-Shan South Road, Taipei City, 100, Taiwan, 886 2 23123456 ext 66832, tennishuang@gmail.com %K smartphone %K mobile phone %K telehealth %K family conference %K shared decision making %K COVID-19 %K palliative care %K end-of-life care %D 2020 %7 28.10.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. Objective: We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. Methods: Family conferences comprised three phases designed according to telehealth implementation guidelines—the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: “team talk,” “option talk,” and “decision talk.” The model has been implemented at a national cancer treatment center in Taiwan since February 2020. Results: From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients’ mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%). Conclusions: Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic. %M 33021483 %R 10.2196/22069 %U http://mhealth.jmir.org/2020/10/e22069/ %U https://doi.org/10.2196/22069 %U http://www.ncbi.nlm.nih.gov/pubmed/33021483 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e20619 %T The Abortion Web Ecosystem: Cross-Sectional Analysis of Trustworthiness and Bias %A Han,Leo %A Boniface,Emily R %A Han,Lisa Yin %A Albright,Jonathan %A Doty,Nora %A Darney,Blair G %+ Department of English, Arizona State University, Ross-Blakley Hall, 1102 S McAllister Ave, Tempe, AZ, 85281, United States, 1 720 201 1533, lyhan@asu.edu %K internet %K abortion %K media %K websites %K infodemiology %K infodemic %K quality of health information %K bias in patient education %D 2020 %7 26.10.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: People use the internet as a primary source for learning about medical procedures and their associated safety profiles and risks. Although abortion is one of the most common procedures worldwide among women in their reproductive years, it is controversial and highly politicized. Substantial scientific evidence demonstrates that abortion is safe and does not increase a woman’s future risk for depressive disorders or infertility. The extent to which information found on the internet reflects these medical facts in a trustworthy and unbiased manner is not known. Objective: The purpose of this study was to collate and describe the trustworthiness and political slant or bias of web-based information about abortion safety and risks of depression and infertility following abortion. Methods: We performed a cross-sectional study of internet websites using 3 search topics: (1) is abortion safe?, (2) does abortion cause depression?, and (3) does abortion cause infertility? We used the Google Adwords tool to identify the search terms most associated with those topics and Google’s search engine to generate databases of websites related to each topic. We then classified and rated each website in terms of content slant (pro-choice, neutral, anti-choice), clarity of slant (obvious, in-between, or difficult/can’t tell), trustworthiness (rating scale of 1-5, 5=most trustworthy), type (forum, feature, scholarly article, resource page, news article, blog, or video), and top-level domain (.com, .net, .org, .edu, .gov, or international domain). We compared website characteristics by search topic (safety, depression, or infertility) using bivariate tests. We summarized trustworthiness using the median and IQR, and we used box-and-whisker plots to visually compare trustworthiness by slant and domain type. Results: Our search methods yielded a total of 111, 120, and 85 unique sites for safety, depression, and infertility, respectively. Of all the sites (n=316), 57.3% (181/316) were neutral, 35.4% (112/316) were anti-choice, and 7.3% (23/316) were pro-choice. The median trustworthiness score was 2.7 (IQR 1.7-3.7), which did not differ significantly across topics (P=.409). Anti-choice sites were less trustworthy (median score 1.3, IQR 1.0-1.7) than neutral (median score 3.3, IQR 2.7-4.0) and pro-choice (median score 3.7, IQR 3.3-4.3) sites. Anti-choice sites were also more likely to have slant clarity that was “difficult to tell” (41/112, 36.6%) compared with neutral (25/181, 13.8%) or pro-choice (4/23, 17.4%; P<.001) sites. A negative search term used for the topic of safety (eg, “risks”) produced sites with lower trustworthiness scores than search terms with the word “safety” (median score 1.7 versus 3.7, respectively; P<.001). Conclusions: People seeking information about the safety and potential risks of abortion are likely to encounter a substantial amount of untrustworthy and slanted/biased abortion information. Anti-choice sites are prevalent, often difficult to identify as anti-choice, and less trustworthy than neutral or pro-choice sites. Web searches may lead the public to believe abortion is riskier than it is. %M 33104002 %R 10.2196/20619 %U http://www.jmir.org/2020/10/e20619/ %U https://doi.org/10.2196/20619 %U http://www.ncbi.nlm.nih.gov/pubmed/33104002 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e21238 %T Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach %A Sungur,Hande %A Yılmaz,Nida Gizem %A Chan,Brittany Ming Chu %A van den Muijsenbergh,Maria E T C %A van Weert,Julia C M %A Schouten,Barbara C %+ Department of Communication Science, Amsterdam School of Communication Research/ASCoR, University of Amsterdam, Postbus 15791, Amsterdam, 1001 NG, Netherlands, 31 20 525 3680, h.sungur@uva.nl %K cancer %K patient participation %K health services needs and demand %K eHealth %K migrants %K physician-patient relations %K culture %K mobile phone %D 2020 %7 26.10.2020 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 33104008 %R 10.2196/21238 %U http://www.jmir.org/2020/10/e21238/ %U https://doi.org/10.2196/21238 %U http://www.ncbi.nlm.nih.gov/pubmed/33104008 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 10 %P e20982 %T Using mHealth to Provide Mobile App Users With Visualization of Health Checkup Data and Educational Videos on Lifestyle-Related Diseases: Methodological Framework for Content Development %A Aida,Azusa %A Svensson,Thomas %A Svensson,Akiko Kishi %A Urushiyama,Hirokazu %A Okushin,Kazuya %A Oguri,Gaku %A Kubota,Naoto %A Koike,Kazuhiko %A Nangaku,Masaomi %A Kadowaki,Takashi %A Yamauchi,Toshimasa %A Chung,Ung-Il %+ Precision Health, Department of Bioengineering, Graduate School of Engineering, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-8656, Japan, 81 3 5841 4737, akiko-kishi@umin.ac.jp %K apps %K educational videos %K health checkup %K lifestyle-related disease %K mHealth, prevention %K telehealth %K visualization %D 2020 %7 21.10.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: The number of people with lifestyle-related diseases continues to increase worldwide. Improving lifestyle behavior with health literacy may be the key to address lifestyle-related diseases. The delivery of educational videos using mobile health (mHealth) services can replace the conventional way of educating individuals, and visualization can replace the provision of health checkup data. Objective: This paper aimed to describe the development of educational content for MIRAMED, a mobile app aimed at improving users’ lifestyle behaviors and health literacy for lifestyle-related diseases. Methods: All videos were based on a single unified framework to provide users with a consistent flow of information. The framework was later turned into a storyboard. The final video contents were created based on this storyboard and further discussions with leading experts and specialist physicians on effective communication with app users about lifestyle-related diseases. Results: The app uses visualization of personal health checkup data and educational videos on lifestyle-related diseases based on the current health guidelines, scientific evidence, and expert opinions of leading specialist physicians in the respective fields. A total of 8 videos were created for specific lifestyle-related diseases affecting 8 organs: (1) brain–cerebrovascular disorder, (2) eyes–diabetic retinopathy, (3) lungs–chronic obstructive pulmonary disease, (4) heart–ischemic heart disease, (5) liver–fatty liver, (6) kidneys–chronic kidney disease (diabetic kidney disease), (7) blood vessels–peripheral arterial disease, and (8) nerves–diabetic neuropathy. Conclusions: Providing enhanced mHealth education using novel digital technologies to visualize conventional health checkup data and lifestyle-related diseases is an innovative strategy. Future studies to evaluate the efficacy of the developed content are planned. %M 33084586 %R 10.2196/20982 %U http://mhealth.jmir.org/2020/10/e20982/ %U https://doi.org/10.2196/20982 %U http://www.ncbi.nlm.nih.gov/pubmed/33084586 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 6 %N 2 %P e21639 %T Developing Patient-Centered Inflammatory Bowel Disease–Related Educational Videos Optimized for Social Media: Qualitative Research Study %A Khalil,Carine %A Van Deen,Welmoed %A Dupuy,Taylor %A Bonthala,Nirupama %A Almario,Christopher %A Spiegel,Brennan %+ Division of Health Services Research, Center for Outcomes Research and Education, Cedars-Sinai Medical Center, 116 N Robertson PACT Building, Los Angeles, CA, 90048, United States, 1 2133361585, carine.khalil@cshs.org %K inflammatory bowel disease %K educational videos %K patient education %K design thinking %K qualitative research %K mobile phone %D 2020 %7 20.10.2020 %9 Original Paper %J JMIR Med Educ %G English %X Background: Important knowledge gaps have been identified related to the causes and symptoms of inflammatory bowel disease (IBD) and medical treatments and their side effects. Patients with IBD turn to social media to learn more about their disease. However, such information found on the web is misleading and often of low quality. Objective: This study aims to gain an in-depth understanding of the unmet educational needs of patients with IBD and to use the resulting insights to develop a collection of freely available, evidence-based educational videos optimized for dissemination through social media. Methods: We used design thinking, a human-centered approach, to guide our qualitative research methodology. We performed focus groups and interviews with a diverse sample of 29 patients with IBD. Data collection was performed in 3 phases (inspiration, ideation, and implementation) based on IDEO design thinking. Phase 1 offered insights into the needs of patients with IBD, whereas phases 2 and 3 involved ideation, prototyping, and video testing. A thematic analysis was performed to analyze the resulting data. Results: Patients emphasized the need for educational videos that address their challenges, needs, and expectations. From the data analysis, 5 video topics and their content emerged: IBD treatments’ risks and benefits; how to be a self-advocate; how to stay healthy with IBD; how to cope with IBD; and educating families, friends, and colleagues about experiences of patients with IBD. Conclusions: Design thinking offers a deep understanding and recognition of the unmet educational needs of patients with IBD; this approach informed the development of 5 evidence-based educational videos. Future research will formally test and disseminate these freely available videos through social media. %M 33079065 %R 10.2196/21639 %U http://mededu.jmir.org/2020/2/e21639/ %U https://doi.org/10.2196/21639 %U http://www.ncbi.nlm.nih.gov/pubmed/33079065 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 8 %N 10 %P e20558 %T Factors Associated With Influential Health-Promoting Messages on Social Media: Content Analysis of Sina Weibo %A Rao,Qingmao %A Zhang,Zuyue %A Lv,Yalan %A Zhao,Yong %A Bai,Li %A Hou,Xiaorong %+ College of Medical Informatics, Chongqing Medical University, No.1, Medical College Road, Yuzhong District, Chongqing, 400016, China, 86 138 8390 1680, xiaoronghou@cqmu.edu.cn %K health-promoting messages %K social media %K Sina Weibo %K influence %K framing effects %K health communication %D 2020 %7 9.10.2020 %9 Original Paper %J JMIR Med Inform %G English %X Background: Social media is a powerful tool for the dissemination of health messages. However, few studies have focused on the factors that improve the influence of health messages on social media. Objective: To explore the influence of goal-framing effects, information organizing, and the use of pictures or videos in health-promoting messages, we conducted a case study of Sina Weibo, a popular social media platform in China. Methods: Literature review and expert discussion were used to determine the health themes of childhood obesity, smoking, and cancer. Web crawler technology was employed to capture data on health-promoting messages. We used the number of retweets, comments, and likes to evaluate the influence of a message. Statistical analysis was then conducted after manual coding. Specifically, binary logistic regression was used for the data analyses. Results: We crawled 20,799 Sina Weibo messages and selected 389 health-promoting messages for this study. Results indicated that the use of gain-framed messages could improve the influence of messages regarding childhood obesity (P<.001), smoking (P=.03), and cancer (P<.001). Statistical expressions could improve the influence of messages about childhood obesity (P=.02), smoking (P=.002), and cancer (P<.001). However, the use of videos significantly improved the influence of health-promoting messages only for the smoking-related messages (P=.009). Conclusions: The findings suggested that gain-framed messages and statistical expressions can be successful strategies to improve the influence of messages. Moreover, appropriate pictures and videos should be added as much as possible when generating health-promoting messages. %M 33034569 %R 10.2196/20558 %U http://medinform.jmir.org/2020/10/e20558/ %U https://doi.org/10.2196/20558 %U http://www.ncbi.nlm.nih.gov/pubmed/33034569 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 9 %P e16984 %T Impact of MyDiabetesPlan, a Web-Based Patient Decision Aid on Decisional Conflict, Diabetes Distress, Quality of Life, and Chronic Illness Care in Patients With Diabetes: Cluster Randomized Controlled Trial %A Yu,Catherine %A Choi,Dorothy %A Bruno,Brigida A %A Thorpe,Kevin E %A Straus,Sharon E %A Cantarutti,Paul %A Chu,Karen %A Frydrych,Paul %A Hoang-Kim,Amy %A Ivers,Noah %A Kaplan,David %A Leung,Fok-Han %A Maxted,John %A Rezmovitz,Jeremy %A Sale,Joanna %A Sodhi-Helou,Sumeet %A Stacey,Dawn %A Telner,Deanna %+ St. Michael's Hospital (Unity Health Toronto), 30 Bond St, Toronto, ON, Canada, 1 416 864 6060, catherine.yu@unityhealth.to %K shared decision making %K goals of care %K decision aid %K diabetes mellitus %K decisional conflict %K quality of life %K patient assessment of chronic illness care %K diabetes distress %K randomized clinical trials %D 2020 %7 30.9.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Person-centered care is critical for delivering high-quality diabetes care. Shared decision making (SDM) is central to person-centered care, and in diabetes care, it can improve decision quality, patient knowledge, and patient risk perception. Delivery of person-centered care can be facilitated with the use of patient decision aids (PtDAs). We developed MyDiabetesPlan, an interactive SDM and goal-setting PtDA designed to help individualize care priorities and support an interprofessional approach to SDM. Objective: This study aims to assess the impact of MyDiabetesPlan on decisional conflict, diabetes distress, health-related quality of life, and patient assessment of chronic illness care at the individual patient level. Methods: A two-step, parallel, 10-site cluster randomized controlled trial (first step: provider-directed implementation only; second step: both provider- and patient-directed implementation 6 months later) was conducted. Participants were adults 18 years and older with diabetes and 2 other comorbidities at 10 family health teams (FHTs) in Southwestern Ontario. FHTs were randomly assigned to MyDiabetesPlan (n=5) or control (n=5) through a computer-generated algorithm. MyDiabetesPlan was integrated into intervention practices, and clinicians (first step) followed by patients (second step) were trained on its use. Control participants received static generic Diabetes Canada resources. Patients were not blinded. Participants completed validated questionnaires at baseline, 6 months, and 12 months. The primary outcome at the individual patient level was decisional conflict; secondary outcomes were diabetes distress, health-related quality of life, chronic illness care, and clinician intention to practice interprofessional SDM. Multilevel hierarchical regression models were used. Results: At the end of the study, the intervention group (5 clusters, n=111) had a modest reduction in total decisional conflicts compared with the control group (5 clusters, n=102; −3.5, 95% CI −7.4 to 0.42). Although there was no difference in diabetes distress or health-related quality of life, there was an increase in patient assessment of chronic illness care (0.7, 95% CI 0.4 to 1.0). Conclusions: Use of goal-setting decision aids modestly improved decision quality and chronic illness care but not quality of life. Our findings may be due to a gap between goal setting and attainment, suggesting a role for optimizing patient engagement and behavioral support. The next steps include clarifying the mechanisms by which decision aids impact outcomes and revising MyDiabetesPlan and its delivery. Trial Registration: ClinicalTrials.gov NCT02379078; https://clinicaltrials.gov/ct2/show/NCT02379078 %M 32996893 %R 10.2196/16984 %U http://www.jmir.org/2020/9/e16984/ %U https://doi.org/10.2196/16984 %U http://www.ncbi.nlm.nih.gov/pubmed/32996893 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 9 %P e18648 %T Optimizing Antibiotic Prescribing for Acute Respiratory Tract Infection in German Primary Care: Study Protocol for Evaluation of the RESIST Program %A Löffler,Christin %A Krüger,Antje %A Daubmann,Anne %A Iwen,Julia %A Biedermann,Marc %A Schulz,Maike %A Wegscheider,Karl %A Altiner,Attila %A Feldmeier,Gregor %A Wollny,Anja %+ Institute of General Practice, Rostock University Medical Center, Doberaner Str 142 (Villa im Hof), Rostock, 18057, Germany, 49 381 494 ext 2481, christin.loeffler@med.uni-rostock.de %K antibacterial agents %K respiratory tract infection %K upper respiratory tract infection %K lower respiratory tract infection %K primary care %K primary health care %K physician-patient relation %K shared decision making %K antibiotic resistance %D 2020 %7 30.9.2020 %9 Original Paper %J JMIR Res Protoc %G English %X Background: The emergence and increased spread of microbial resistance is a major challenge to all health care systems worldwide. In primary care, acute respiratory tract infection (ARTI) is the health condition most strongly related to antibiotic overuse. Objective: The RESIST program aims at optimizing antibiotic prescribing for ARTI in German primary care. By completing a problem-orientated online training course, physicians are motivated and empowered to utilize patient-centered doctor-patient communication strategies, including shared decision making, in the treatment of patients with ARTI. Methods: RESIST will be evaluated in the form of a nonrandomized controlled trial. Approximately 3000 physicians of 8 (out of 16) German federal states can participate in the program. Patient and physician data are retrieved from routine health care data. Physicians not participating in the program serve as controls, either among the 8 participating regional Associations of Statutory Health Insurance Physicians (control group 1) or among the remaining associations not participating in RESIST (control group 2). Antibiotic prescription rates before the intervention (T0: 2016, 1st and 2nd quarters of 2017) and after the intervention (T1: 3rd quarter of 2017 until 1st quarter of 2019) will be compared. The primary outcome measure is the overall antibiotic prescription rate for all patients insured with German statutory health insurance before and after provision of the online course. The secondary outcome is the antibiotic prescription rate for coded ARTI before and after the intervention. Results: RESIST is publicly funded by the Innovations funds of the Federal Joint Committee in Germany and was approved in December 2016. Recruitment of physicians is now completed, and a total of 2460 physicians participated in the intervention. Data analysis started in February 2020. Conclusions: With approximately 3000 physicians participating in the program, RESIST is among the largest real-world interventions aiming at reducing inadequate antibiotic prescribing for ARTI in primary care. Long-term follow up of up to 21 months will allow for investigating the sustainability of the intervention. Trial Registration: ISRCTN Registry ISRCTN13934505; http://www.isrctn.com/ISRCTN13934505 International Registered Report Identifier (IRRID): RR1-10.2196/18648 %M 32996888 %R 10.2196/18648 %U http://www.researchprotocols.org/2020/9/e18648/ %U https://doi.org/10.2196/18648 %U http://www.ncbi.nlm.nih.gov/pubmed/32996888 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 9 %P e20910 %T Exploring Types of Information Sources Used When Choosing Doctors: Observational Study in an Online Health Care Community %A Zhang,Shuang %A Wang,Jying-Nan %A Chiu,Ya-Ling %A Hsu,Yuan-Teng %+ Research Center of Finance, Shanghai Business School, No 2271 West Zhong Shan Rd, Shanghai, 200235, China, 86 21 64870020 ext 1404, yuanteng.hsu@gmail.com %K information source %K decision making %K online reviews %K online health care community %K doctor %K health information %D 2020 %7 16.9.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Patients attempt to make appropriate decisions based on their own knowledge when choosing a doctor. In this process, the first question usually faced is that of how to obtain useful and relevant information. This study investigated the types of information sources that are used widely by patients in choosing a doctor and identified ways in which the preferred sources differ in various situations. Objective: This study aims to address the following questions: (1) What is the proportion in which each of the various information sources is used? (2) How does the information source preferred by patients in choosing a doctor change when there is a difference in the difficulty of medical decision making, in the level of the hospital, or in a rural versus urban situation? (3) How do information sources used by patients differ when they choose doctors with different specialties? Methods: This study overcomes a major limitation in the use of the survey technique by employing data from the Good Doctor website, which is now China's leading online health care community, data which are objective and can be obtained relatively easily and frequently. Multinomial logistic regression models were applied to examine whether the proportion of use of these information sources changes in different situations. We then used visual analysis to explore the question of which type of information source patients prefer to use when they seek medical assistance from doctors with different specialties. Results: The 3 main information sources were online reviews (OR), family and friend recommendations (FR), and doctor recommendations (DR), with proportions of use of 32.93% (559,345/1,698,666), 23.68% (402,322/1,698,666), and 17.48% (296,912/1,698,666), respectively. Difficulty in medical decision making, the hospital level, and rural-urban differences were significantly associated with patients’ preferred information sources for choosing doctors. Further, the sources of information that patients prefer to use were found to vary when they looked for doctors with different medical specialties. Conclusions: Patients are less likely to use online reviews when medical decisions are more difficult or when the provider is not a tertiary hospital, the former situation leading to a greater use of online reviews and the latter to a greater use of family and friend recommendations. In addition, patients in large cities are more likely to use information from online reviews than family and friend recommendations. Among different medical specialties, for those in which personal privacy is a concern, online reviews are the most common source. For those related to children, patients are more likely to refer to family and friend recommendations, and for those related to surgery, they value doctor recommendations more highly. Our results can not only contribute to aiding government efforts to further promote the dissemination of health care information but may also help health care industry managers develop better marketing strategies. %M 32936080 %R 10.2196/20910 %U http://www.jmir.org/2020/9/e20910/ %U https://doi.org/10.2196/20910 %U http://www.ncbi.nlm.nih.gov/pubmed/32936080 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 9 %P e19436 %T Use of Decision Support Tools to Empower Pregnant Women: Systematic Review %A Ngo,Elin %A Truong,Maria Bich-Thuy %A Nordeng,Hedvig %+ PharmacoEpidemiology and Drug Safety Research Group, Department of Pharmacy, University of Oslo, Postboks 1068 Blindern, Oslo, 0316, Norway, 47 93849866, e.t.p.ngo@farmasi.uio.no %K decision support tools %K pregnancy %K mobile application %K empowerment %D 2020 %7 14.9.2020 %9 Review %J J Med Internet Res %G English %X Background: Women face many health-related decisions during pregnancy. Digitalization, new technology, and a greater focus on empowering patients have driven the development of patient-centered decision support tools. Objective: This systematic review provides an overview of studies investigating the effect of patient-centered decision support tools for pregnant women. Methods: We searched 5 online databases, MEDLINE, EMBASE, Web of Science, PsycINFO, and Scopus, from inception to December 1, 2019. Two independent researchers screened titles, abstracts, and full-texts against the inclusion criteria. All studies investigating the effect of patient-centered decision support tools for health-related issues among pregnant women were included. Study characteristics and results were extracted using the review management tool Rayyan and analyzed according to topic, type of decision support tools, control group, outcome measurements, and results. Results: The 25 eligible studies covered a range of health topics, including prenatal screening (n=10), gestational diabetes and weight gain (n=7), lifestyle (n=3), blood pressure and preeclampsia (n=2), depression (n=1), asthma (n=1), and psychological well-being (n=1). In general, the use of decision support tools increased women's knowledge, and recording symptoms enhanced satisfaction with maternity care. Conclusions: The opportunities created by digitalization and technology should be used to develop innovative patient-centered decision support tools tailored to support pregnant women. Effect on clinical outcomes should be documented. %M 32924961 %R 10.2196/19436 %U http://www.jmir.org/2020/9/e19436/ %U https://doi.org/10.2196/19436 %U http://www.ncbi.nlm.nih.gov/pubmed/32924961 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 9 %P e17646 %T Mobile Health App for Self-Learning on HIV Prevention Knowledge and Services Among a Young Indonesian Key Population: Cohort Study %A Garg,Priyanka Rani %A Uppal,Leena %A Mehra,Sunil %A Mehra,Devika %+ MAMTA Health Institute for Mother and Child, B-5, Greater Kailash Enclave-II, New Delhi, 110048, India, 91 11 29220210, leena@mamtahimc.org %K mHealth %K Indonesia %K HIV %K key populations %D 2020 %7 8.9.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Indonesia is the only country in the Asia Pacific region where the incidence of HIV is still on the rise, and its prevalence is extremely high among the key populations such as men who have sex with men, transgender women, and people who inject/use drugs. Mobile health (mHealth) apps provide an innovative platform for delivering tailored HIV prevention and care among these populations more efficiently than possible through the direct face-to-face approach. Objective: The aim of this study was to assess the role of a peer-customized mobile app based on the principle of self-learning for improving HIV prevention knowledge and access to health services among men who have sex with men, transgender women (known as Waria in Indonesia), and people who use drugs in Indonesia. Methods: A prospective intervention cohort study was conducted among the key populations in five provinces of Indonesia (Jakarata, West Java, East Java, Special Region of Yogyakarta, and Bali). The data were evaluated using a pre-post assessment survey conducted on a sample of 200 unique users, including 50 men who have sex with men and transgender women each, and 100 people who use drugs, with a follow-up response rate of 98% and 70%, respectively. An mHealth app named RUMAH SELA was developed and implemented among the key populations. Results: From baseline to the endpoint of the study, there was a significant increase in comprehensive HIV-related knowledge from 20% (10/49) to 60% (29/49), 22% (11/49) to 57% (28/49), and 49% (34/70) to 74% (52/70) among men who have sex with men (P=.004), transgender women (P<.001), and people who use drugs (P<.001), respectively. There was also a reduction in sexual activities without condom use from 22% (11/49) to 19% (9/49), 18% (9/49) to 12% (6/49), and 21% (15/70) to 10% (7/70) among men who have sex with men (P=.45), transgender women (P=.25), and people who use drugs (P<.001), respectively. There was an uptake of HIV testing by 31% (15/49) for men who have sex with men, 49% (24/49) for transgender women, and 26% (18/70) for people who use drugs after using the app. There was a reduction in injecting drugs with a used needle in drug users from 45/70 (78%) to 15/70 (26%). Measures of self-esteem increased among men who have sex with men (mean 26.4 vs mean 27.1), transgender women (mean 26.5 vs mean 27.8; P=.02), and people who use drugs (mean 24.0 vs mean 25.0). In addition, 27% (7/24) of men who have sex with men, 25% (4/15) of transgender women, and 11% (2/18) of drug users made an appointment for an HIV test through the app. The app was quite highly accepted by the key populations as nearly a quarter felt that they became more confident in discussing issues about sexuality, more than 80% found that the app provided sufficient knowledge about HIV, and more than half of the participants found the app to be user friendly. Conclusions: This one-of-a-kind mHealth intervention with an mHealth app as a self-learning tool is effective in increasing HIV-related knowledge and behavior, and access to services with strong acceptability by the community. There is a need to scale up such interventions for efficacy testing in a larger population to provide evidence for national-level mHealth programs addressing HIV. %M 32896831 %R 10.2196/17646 %U https://mhealth.jmir.org/2020/9/e17646 %U https://doi.org/10.2196/17646 %U http://www.ncbi.nlm.nih.gov/pubmed/32896831 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 9 %P e18481 %T Impact of the Internet on Medical Decisions of Chinese Adults: Longitudinal Data Analysis %A Ma,Qianqian %A Sun,Dongxu %A Cui,Fangfang %A Zhai,Yunkai %A Zhao,Jie %A He,Xianying %A Shi,Jinming %A Gao,Jinghong %A Li,Mingyuan %A Zhang,Wenjie %+ National Engineering Laboratory for Internet Medical Systems and Applications, The First Affiliated Hospital of Zhengzhou University, 1 Jianshe Road, Erqi District, Zhengzhou, Henan, 450052, China, 86 371 67966215, zhaiyunkai@zzu.edu.cn %K internet %K medical decision %K health care provider choice %K adult %K longitudinal data analysis %K hierarchical medical policy %D 2020 %7 3.9.2020 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 32880581 %R 10.2196/18481 %U https://www.jmir.org/2020/9/e18481 %U https://doi.org/10.2196/18481 %U http://www.ncbi.nlm.nih.gov/pubmed/32880581 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 8 %N 9 %P e18930 %T Human- Versus Machine Learning–Based Triage Using Digitalized Patient Histories in Primary Care: Comparative Study %A Entezarjou,Artin %A Bonamy,Anna-Karin Edstedt %A Benjaminsson,Simon %A Herman,Pawel %A Midlöv,Patrik %+ Center for Primary Health Care Research, Department of Clinical Sciences in Malmö/Family Medicine, Lund University, Box 50332, Malmö, 202 13, Sweden, 46 40391400, artin.entezarjou@med.lu.se %K machine learning %K artificial intelligence %K decision support %K primary care %K triage %D 2020 %7 3.9.2020 %9 Original Paper %J JMIR Med Inform %G English %X Background: Smartphones have made it possible for patients to digitally report symptoms before physical primary care visits. Using machine learning (ML), these data offer an opportunity to support decisions about the appropriate level of care (triage). Objective: The purpose of this study was to explore the interrater reliability between human physicians and an automated ML-based triage method. Methods: After testing several models, a naïve Bayes triage model was created using data from digital medical histories, capable of classifying digital medical history reports as either in need of urgent physical examination or not in need of urgent physical examination. The model was tested on 300 digital medical history reports and classification was compared with the majority vote of an expert panel of 5 primary care physicians (PCPs). Reliability between raters was measured using both Cohen κ (adjusted for chance agreement) and percentage agreement (not adjusted for chance agreement). Results: Interrater reliability as measured by Cohen κ was 0.17 when comparing the majority vote of the reference group with the model. Agreement was 74% (138/186) for cases judged not in need of urgent physical examination and 42% (38/90) for cases judged to be in need of urgent physical examination. No specific features linked to the model’s triage decision could be identified. Between physicians within the panel, Cohen κ was 0.2. Intrarater reliability when 1 physician retriaged 50 reports resulted in Cohen κ of 0.55. Conclusions: Low interrater and intrarater agreement in triage decisions among PCPs limits the possibility to use human decisions as a reference for ML to automate triage in primary care. %M 32880578 %R 10.2196/18930 %U https://medinform.jmir.org/2020/9/e18930 %U https://doi.org/10.2196/18930 %U http://www.ncbi.nlm.nih.gov/pubmed/32880578 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e17406 %T User-Centered Design and Evaluation of a Web-Based Decision Aid for Older Adults Living With Mild Cognitive Impairment and Their Health Care Providers: Mixed Methods Study %A Bogza,Laura-Mihaela %A Patry-Lebeau,Cassandra %A Farmanova,Elina %A Witteman,Holly O %A Elliott,Jacobi %A Stolee,Paul %A Hudon,Carol %A Giguere,Anik M C %+ Laval University Research Centre on Community-Based Primary Health Care, Pavillon Landry-Poulin, Door #A-1-2, Office #2416, 2525 Chemin de la Canardière, Quebec, QC, G1J 0A4, Canada, 1 4188214123, anik.giguere@fmed.ulaval.ca %K decision aid %K mild cognitive impairment %K elderly %K decision support technique %K aging %D 2020 %7 19.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Mild cognitive impairment (MCI) is often considered a transitional state between normal and pathologic (eg, dementia) cognitive aging. Although its prognosis varies largely, the diagnosis carries the risk of causing uncertainty and overtreatment of older adults with MCI who may never progress to dementia. Decision aids help people become better informed and more involved in decision making by providing evidence-based information about options and possible outcomes and by assisting them in clarifying their personal values in relation to the decision to be made. Objective: This study aimed to incorporate features that best support values clarification and adjust the level of detail of a web-based decision aid for individuals with MCI. Methods: We conducted a rapid review to identify options to maintain or improve cognitive functions in individuals with MCI. The evidence was structured into a novel web-based decision aid designed in collaboration with digital specialists and graphic designers. Qualitative and user-centered evaluations were used to draw on users’ knowledge, clarify values, and inform potential adoption in routine clinical practice. We invited clinicians, older adults with MCI, and their caregivers to evaluate the decision aid in 6 consecutive rounds, with new participants in each round. Quantitative data were collected using the Values Clarity and Informed subscales of the Decisional Conflict Scale, the System Usability Scale, the Ottawa Acceptability questionnaire, and a 5-point satisfaction rating scale. We verified their comprehension using a teach-back method and recorded usability issues. We recorded the audio and computer screen during the session. An inductive thematic qualitative analysis approach was used to identify and describe the issues that arose. After each round, an expert panel met to prioritize and find solutions to mitigate the issues. An integrated analysis was conducted to confirm our choices. Results: A total of 7 clinicians (social workers, nurses, family physicians, psychologists) and 12 older (≥60 years) community-dwelling individuals with MCI, half of them women, with education levels going from none to university diploma, were recruited and completed testing. The thematic analysis revealed 3 major issues. First, the user should be guided through the decision-making process by tailoring the presentation of options to users’ priorities using the values clarification exercise. Second, its content should be simple, but not simplistic, notably by using information layering, plain language, and pictograms. Third, the interface should be intuitive and user friendly, utilize pop-up windows and information tips, avoid drop-down menus, and limit the need to scroll down. The quantitative assessments corroborated the qualitative findings. Conclusions: This project resulted in a promising web-based decision aid that can support decision making for MCI intervention, based on the personal values and preferences of the users. Further ongoing research will allow its implementation to be tested in clinical settings. %M 32442151 %R 10.2196/17406 %U https://www.jmir.org/2020/8/e17406 %U https://doi.org/10.2196/17406 %U http://www.ncbi.nlm.nih.gov/pubmed/32442151 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e18684 %T Googling Musculoskeletal-Related Pain and Ranking of Medical Associations’ Patient Information Pages: Google Ads Keyword Planner Analysis %A Yamaguchi,Yoichiro %A Lee,Deokcheol %A Nagai,Takuya %A Funamoto,Taro %A Tajima,Takuya %A Chosa,Etsuo %+ Department of Orthopaedic Surgery, Faculty of Medicine, University of Miyazaki, 5200 Kihara, Kiyotake, Miyazaki, 889-1692, Japan, 81 0985 85 0986, yoichiroh_yamaguchi@med.miyazaki-u.ac.jp %K Google %K ad words %K infodemiology %K musculoskeletal-related pain %K patient education %K medical information %D 2020 %7 14.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Most people currently use the internet to obtain information about many subjects, including health information. Thus, medical associations need to provide accurate medical information websites. Although medical associations have their own patient education pages, it is not clear if these websites actually show up in search results. Objective: The aim of this study was to evaluate how well medical associations function as online information providers by searching for information about musculoskeletal-related pain online and determining the ranking of the websites of medical associations. Methods: We conducted a Google search for frequently searched keywords. Keywords were extracted using Google Ads Keyword Planner associated with “pain” relevant to the musculoskeletal system from June 2016 to December 2019. The top 20 search queries were extracted and searched using the Google search engine in Japan and the United States. Results: The number of suggested queries for “pain” provided by Google Ads Keyword Planner was 930 in the United States and 2400 in Japan. Among the top 20 musculoskeletal-related pain queries chosen, the probability that the medical associations’ websites would appear in the top 10 results was 30% in the United States and 45% in Japan. In five queries each, the associations’ websites did not appear among the top 100 results. No significant difference was found in the rank of the associations’ website search results (P=.28). Conclusions: To provide accurate medical information to patients, it is essential to undertake effective measures for search engine optimization. For orthopedic associations, it is necessary that their websites should appear among the top search results. %M 32795991 %R 10.2196/18684 %U https://www.jmir.org/2020/8/e18684 %U https://doi.org/10.2196/18684 %U http://www.ncbi.nlm.nih.gov/pubmed/32795991 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e18355 %T Understanding Self-Guided Web-Based Educational Interventions for Patients With Chronic Health Conditions: Systematic Review of Intervention Features and Adherence %A Xie,Li Feng %A Itzkovitz,Alexandra %A Roy-Fleming,Amelie %A Da Costa,Deborah %A Brazeau,Anne-Sophie %+ School of Human Nutrition, McGill University, 21111 Lakeshore, Ste-Anne-de-Bellevue, Sainte-Anne-de-Bellevue, QC, H9X 3V9, Canada, 1 514 398 7848, anne-sophie.brazeau@mcgill.ca %K chronic disease %K online learning %K self-management %K mobile phone %D 2020 %7 13.8.2020 %9 Review %J J Med Internet Res %G English %X Background: Chronic diseases contribute to 71% of deaths worldwide every year, and an estimated 15 million people between the ages of 30 and 69 years die mainly because of cardiovascular disease, cancer, chronic respiratory diseases, or diabetes. Web-based educational interventions may facilitate disease management. These are also considered to be a flexible and low-cost method to deliver tailored information to patients. Previous studies concluded that the implementation of different features and the degree of adherence to the intervention are key factors in determining the success of the intervention. However, limited research has been conducted to understand the acceptability of specific features and user adherence to self-guided web interventions. Objective: This systematic review aims to understand how web-based intervention features are evaluated, to investigate their acceptability, and to describe how adherence to web-based self-guided interventions is defined and measured. Methods: Studies published on self-guided web-based educational interventions for people (≥14 years old) with chronic health conditions published between January 2005 and June 2020 were reviewed following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Statement protocol. The search was performed using the PubMed, Cochrane Library, and EMBASE (Excerpta Medica dataBASE) databases; the reference lists of the selected articles were also reviewed. The comparison of the interventions and analysis of the features were based on the published content from the selected articles. Results: A total of 20 studies were included. Seven principal features were identified, with goal setting, self-monitoring, and feedback being the most frequently used. The acceptability of the features was measured based on the comments collected from users, their association with clinical outcomes, or device adherence. The use of quizzes was positively reported by participants. Self-monitoring, goal setting, feedback, and discussion forums yielded mixed results. The negative acceptability was related to the choice of the discussion topic, lack of face-to-face contact, and technical issues. This review shows that the evaluation of adherence to educational interventions was inconsistent among the studies, limiting comparisons. A clear definition of adherence to an intervention is lacking. Conclusions: Although limited information was available, it appears that features related to interaction and personalization are important for improving clinical outcomes and users’ experience. When designing web-based interventions, the selection of features should be based on the targeted population’s needs, the balance between positive and negative impacts of having human involvement in the intervention, and the reduction of technical barriers. There is a lack of consensus on the method of evaluating adherence to an intervention. Both investigations of the acceptability features and adherence should be considered when designing and evaluating web-based interventions. A proof-of-concept or pilot study would be useful for establishing the required level of engagement needed to define adherence. %M 32788152 %R 10.2196/18355 %U http://www.jmir.org/2020/8/e18355/ %U https://doi.org/10.2196/18355 %U http://www.ncbi.nlm.nih.gov/pubmed/32788152 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 8 %P e19531 %T Use of Tablets and Smartphones to Support Medical Decision Making in US Adults: Cross-Sectional Study %A Langford,Aisha %A Orellana,Kerli %A Kalinowski,Jolaade %A Aird,Carolyn %A Buderer,Nancy %+ Department of Population Health, NYU Langone Health, 30 E 30th Street, Room 611, New York, NY, 10016, United States, 1 646 501 2914, aisha.langford@nyulangone.org %K smartphone %K mHealth %K eHealth %K mobile phone %K cell phone %K tablets %K ownership %K decision making %K health communication %K telemedicine %K monitoring %K physiologic %K surveys and questionnaires %D 2020 %7 12.8.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Tablet and smartphone ownership have increased among US adults over the past decade. However, the degree to which people use mobile devices to help them make medical decisions remains unclear. Objective: The objective of this study is to explore factors associated with self-reported use of tablets or smartphones to support medical decision making in a nationally representative sample of US adults. Methods: Cross-sectional data from participants in the 2018 Health Information National Trends Survey (HINTS 5, Cycle 2) were evaluated. There were 3504 responses in the full HINTS 5 Cycle 2 data set; 2321 remained after eliminating respondents who did not have complete data for all the variables of interest. The primary outcome was use of a tablet or smartphone to help make a decision about how to treat an illness or condition. Sociodemographic factors including gender, race/ethnicity, and education were evaluated. Additionally, mobile health (mHealth)- and electronic health (eHealth)-related factors were evaluated including (1) the presence of health and wellness apps on a tablet or smartphone, (2) use of electronic devices other than tablets and smartphones to monitor health (eg, Fitbit, blood glucose monitor, and blood pressure monitor), and (3) whether people shared health information from an electronic monitoring device or smartphone with a health professional within the last 12 months. Descriptive and inferential statistics were conducted using SAS version 9.4. Weighted population estimates and standard errors, univariate odds ratios, and 95% CIs were calculated, comparing respondents who used tablets or smartphones to help make medical decisions (n=944) with those who did not (n=1377), separately for each factor. Factors of interest with a P value of <.10 were included in a subsequent multivariable logistic regression model. Results: Compared with women, men had lower odds of reporting that a tablet or smartphone helped them make a medical decision. Respondents aged 75 and older also had lower odds of using a tablet or smartphone compared with younger respondents aged 18-34. By contrast, those who had health and wellness apps on tablets or smartphones, used other electronic devices to monitor health, and shared information from devices or smartphones with health care professionals had higher odds of reporting that tablets or smartphones helped them make a medical decision, compared with those who did not. Conclusions: A limitation of this research is that information was not available regarding the specific health condition for which a tablet or smartphone helped people make a decision or the type of decision made (eg, surgery, medication changes). In US adults, mHealth and eHealth use, and also certain sociodemographic factors are associated with using tablets or smartphones to support medical decision making. Findings from this study may inform future mHealth and other digital health interventions designed to support medical decision making. %M 32784181 %R 10.2196/19531 %U https://mhealth.jmir.org/2020/8/e19531 %U https://doi.org/10.2196/19531 %U http://www.ncbi.nlm.nih.gov/pubmed/32784181 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 8 %P e19529 %T Mobile Fotonovelas Within a Text Message Outreach: An Innovative Tool to Build Health Literacy and Influence Behaviors in Response to the COVID-19 Pandemic %A Brar Prayaga,Rena %A Prayaga,Ram S %+ mPulse Mobile, Inc, 16530 Ventura Blvd, Suite 500, Encino, CA, 91436, United States, 1 888 678 5735, rena@mpulsemobile.com %K text messaging %K SMS %K mobile fotonovelas %K COVID-19 %K social isolation %K social support %K health behaviors %K health literacy %K health plans %D 2020 %7 10.8.2020 %9 Viewpoint %J JMIR Mhealth Uhealth %G English %X With all 50 US states reporting cases of coronavirus disease (COVID-19), people around the country are adapting and stepping up to the challenges of the pandemic; however, they are also frightened, anxious, and confused about what they can do to avoid exposure to the disease. Usual habits have been interrupted as a result of the crisis, and consumers are open to suggestions and strategies to help them change long-standing attitudes and behaviors. In response, a novel and innovative mobile communication capability was developed to present health messages in English and Spanish with links to fotonovelas (visual stories) that are accessible, easy to understand across literacy levels, and compelling to a diverse audience. While SMS text message outreach has been used to build health literacy and provide social support, few studies have explored the benefits of SMS text messaging combined with visual stories to influence health behaviors and build knowledge and self-efficacy. In particular, this approach can be used to provide vital information, resources, empathy, and support to the most vulnerable populations. This also allows providers and health plans to quickly reach out to their patients and members without any additional resource demands at a time when the health care system is severely overburdened. %M 32716894 %R 10.2196/19529 %U http://mhealth.jmir.org/2020/8/e19529/ %U https://doi.org/10.2196/19529 %U http://www.ncbi.nlm.nih.gov/pubmed/32716894 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e15899 %T Communicating Uncertainty in Written Consumer Health Information to the Public: Parallel-Group, Web-Based Randomized Controlled Trial %A Büchter,Roland B %A Betsch,Cornelia %A Ehrlich,Martina %A Fechtelpeter,Dennis %A Grouven,Ulrich %A Keller,Sabine %A Meuer,Regina %A Rossmann,Constanze %A Waltering,Andreas %+ Institute for Quality and Efficiency in Health Care (IQWiG), Im Mediapark 8, Cologne, 50670, Germany, 49 221 35685 ext 413, roland.buechter@iqwig.de %K uncertainty %K consumer health information %K decision making %D 2020 %7 10.8.2020 %9 Original Paper %J J Med Internet Res %G English %X 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 %M 32773375 %R 10.2196/15899 %U http://www.jmir.org/2020/8/e15899/ %U https://doi.org/10.2196/15899 %U http://www.ncbi.nlm.nih.gov/pubmed/32773375 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e19028 %T Experiences of a National Web-Based Heart Age Calculator for Cardiovascular Disease Prevention: User Characteristics, Heart Age Results, and Behavior Change Survey %A Bonner,Carissa %A Raffoul,Natalie %A Battaglia,Tanya %A Mitchell,Julie Anne %A Batcup,Carys %A Stavreski,Bill %+ Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Rm 226A, Edward Ford Building A27, Sydney, , Australia, 61 2 9351 7125, carissa.bonner@sydney.edu.au %K heart age %K risk communication %K cardiovascular disease prevention %K eHealth %K behavior change %D 2020 %7 7.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Heart age calculators are used worldwide to engage the public in cardiovascular disease (CVD) prevention. Experimental studies with small samples have found mixed effects of these tools, and previous reports of population samples that used web-based heart age tools have not evaluated psychological and behavioral outcomes. Objective: This study aims to report on national users of the Australian heart age calculator and the follow-up of a sample of users. Methods: The heart age calculator was launched in 2019 by the National Heart Foundation of Australia. Heart age results were calculated for all users and recorded for those who signed up for a heart age report and an email follow-up over 10 weeks, after which a survey was conducted. CVD risk factors, heart age results, and psychological and behavioral questions were analyzed using descriptive statistics and chi-square tests. Open responses were thematically coded. Results: There were 361,044 anonymous users over 5 months, of which 30,279 signed up to receive a heart age report and 1303 completed the survey. There were more women (19,840/30,279, 65.52%), with an average age of 55.67 (SD 11.43) years, and most users knew blood pressure levels (20,279/30,279, 66.97%) but not cholesterol levels (12,267/30,279, 40.51%). The average heart age result was 4.61 (SD 4.71) years older than the current age, including (23,840/30,279, 78.73%) with an older heart age. For the survey, most users recalled their heart age category (892/1303, 68.46%), and many reported lifestyle improvements (diet 821/1303, 63.01% and physical activity 809/1303, 62.09%). People with an older heart age result were more likely to report a doctor visit (538/1055, 51.00%). Participants indicated strong emotional responses to heart age, both positive and negative. Conclusions: Most Australian users received an older heart age as per international and UK heart age tools. Heart age reports with follow-up over 10 weeks prompted strong emotional responses, high recall rates, and self-reported lifestyle changes and clinical checks for more than half of the survey respondents. These findings are based on a more engaged user sample than previous research, who were more likely to know blood pressure and cholesterol values. Further research is needed to determine which aspects are most effective in initiating and maintaining lifestyle changes. The results confirm high public interest in heart age tools, but additional support is needed to help users understand the results and take appropriate action. %M 32763875 %R 10.2196/19028 %U https://www.jmir.org/2020/8/e19028 %U https://doi.org/10.2196/19028 %U http://www.ncbi.nlm.nih.gov/pubmed/32763875 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 8 %P e18223 %T Shared Decision Making and Patient-Centered Care in Israel, Jordan, and the United States: Exploratory and Comparative Survey Study of Physician Perceptions %A Zisman-Ilani,Yaara %A Obeidat,Rana %A Fang,Lauren %A Hsieh,Sarah %A Berger,Zackary %+ Department of Social and Behavioral Sciences, College of Public Health, Temple University, 1700 North Broad St, Philadelphia, PA, 19122, United States, 1 215 204 5618, yaara@temple.edu %K shared decision making %K patient-centered care %K Middle East %K physicians %K perceptions %D 2020 %7 3.8.2020 %9 Original Paper %J JMIR Form Res %G English %X Background: Shared decision making (SDM) is a health communication model that evolved in Europe and North America and largely reflects the values and medical practices dominant in these areas. Objective: This study aims to understand the beliefs, perceptions, and practices related to SDM and patient-centered care (PCC) of physicians in Israel, Jordan, and the United States. Methods: A hypothesis-generating comparative survey study was administered to physicians from Israel, Jordan, and the United States. Results: A total of 36 surveys were collected via snowball sampling (Jordan: n=15; United States: n=12; Israel: n=9). SDM was perceived as a way to inform patients and allow them to participate in their care. Barriers to implementing SDM varied based on place of origin; physicians in the United States mentioned limited time, physicians in Jordan reported that a lack of patient education limits SDM practices, and physicians in Israel reported lack of communication training. Most US physicians defined PCC as a practice for prioritizing patient preferences, whereas both Jordanian and Israeli physicians defined PCC as a holistic approach to care and to prioritizing patient needs. Barriers to implementing PCC, as seen by US physicians, were mostly centered on limited appointment time and insurance coverage. In Jordan and Israel, staff shortage and a lack of resources in the system were seen as major barriers to PCC implementation. Conclusions: The study adds to the limited, yet important, literature on SDM and PCC in areas of the world outside the United States, Canada, Australia, and Western Europe. The study suggests that perceptions of PCC might widely differ among these regions, whereas concepts of SDM might be shared. Future work should clarify these differences. %M 32744509 %R 10.2196/18223 %U https://formative.jmir.org/2020/8/e18223 %U https://doi.org/10.2196/18223 %U http://www.ncbi.nlm.nih.gov/pubmed/32744509 %0 Journal Article %@ 2369-2529 %I JMIR Publications %V 7 %N 2 %P e16351 %T Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation %A Allin,Sonya %A Shepherd,John %A Thorson,Teri %A Tomasone,Jennifer %A Munce,Sarah %A Linassi,Gary %A McBride,Christopher B %A Jiancaro,Tizneem %A Jaglal,Susan %+ Department of Physical Therapy, University of Toronto, 160-500 University Ave, Toronto, ON, M5G 1V7, Canada, 1 416 946 8641, s.allin@utoronto.ca %K community-based participatory research %K spinal cord injury %K self-management %K motivational interviewing %K internet-based intervention %D 2020 %7 31.7.2020 %9 Original Paper %J JMIR Rehabil Assist Technol %G English %X Background: Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI & U. Objective: This study aims to evaluate the feasibility and potential impact of the SCI & U program in the context of a mixed methods pilot study. Methods: The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative Results: Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. Conclusions: Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial. %M 32589148 %R 10.2196/16351 %U http://rehab.jmir.org/2020/2/e16351/ %U https://doi.org/10.2196/16351 %U http://www.ncbi.nlm.nih.gov/pubmed/32589148 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 7 %P e16687 %T Building a Successful Massive Open Online Course About Multiple Sclerosis: A Process Description %A Claflin,Suzi B %A Gates,Rachael %A Maher,Maree %A Taylor,Bruce V %+ Menzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, 7000, Australia, 61 0362267728, suzi.claflin@utas.edu.au %K multiple sclerosis %K health education %D 2020 %7 29.7.2020 %9 Viewpoint %J J Med Internet Res %G English %X Background: Over the course of a year, we developed and tested a 6-week massive open online course (MOOC) on multiple sclerosis (MS) in consultation with the MS community. The course targeted the MS community and interested laypeople and was titled Understanding MS. The primary purpose of the course was to improve MS knowledge, health literacy, and resilience among participants. The final version of the MOOC made available for open enrollment was ranked first among all MOOCs released in 2019 (n>2400) based on participant reviews. Objective: The aim of this study was to present a detailed description and assessment of the development process of the Understanding MS MOOC. Methods: The development process included a course development focus group; the creation of more than 50 content videos and related text, quizzes, activities, and discussion prompts; the creation of original images and animations; a pilot study; and collaborations with people living with MS, MS nurses, allied health care practitioners, and neurologists and researchers from 4 universities. Results: Overall, the process was efficient and effective. With a few small changes, we recommend this approach to those seeking to develop a similar course. This process led to the development of a highly reviewed MOOC with excellent user satisfaction. Conclusions: We identified 5 key lessons from this process: (1) community support is essential, (2) stakeholder involvement improves content quality, (3) plan for research from the beginning, (4) coordination between the academic lead and project manager team ensures a consistent voice, and (5) a network of collaborators is a key resource. %M 32723726 %R 10.2196/16687 %U https://www.jmir.org/2020/7/e16687 %U https://doi.org/10.2196/16687 %U http://www.ncbi.nlm.nih.gov/pubmed/32723726 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 7 %P e17441 %T A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study %A Waterman,Amy D %A Wood,Emily H %A Ranasinghe,Omesh N %A Faye Lipsey,Amanda %A Anderson,Crystal %A Balliet,Wendy %A Holland-Carter,Lauren %A Maurer,Stacey %A Aurora Posadas Salas,Maria %+ Division of Nephrology, David Geffen School of Medicine, University of California, Los Angeles, 1018 Westwood Blvd, Los Angeles, CA, 90024, United States, 1 4243277278, awaterman@mednet.ucla.edu %K living donor kidney transplant %K living donation %K health education %K informed decision-making %K awareness %K health literacy %K video library %K health technology %K kidney diseases %K diffusion of innovation %K digital library %K mobile phone %D 2020 %7 21.7.2020 %9 Original Paper %J JMIR Form Res %G English %X 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. %M 32480362 %R 10.2196/17441 %U https://formative.jmir.org/2020/7/e17441 %U https://doi.org/10.2196/17441 %U http://www.ncbi.nlm.nih.gov/pubmed/32480362 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 7 %P e16801 %T Developing a Taxonomy of Communication Techniques and Aids Used By Healthcare Providers During Patient Consultations: Protocol for a Systematic Review %A Shersher,Violetta %A Haines,Terry P %A Williams,Cylie %A Willoughby,Louisa %A Sturgiss,Elizabeth %A Weller,Carolina %+ School of Primary and Allied Health, Monash University, Peninsula Campus, 47-49 Moorooduc Hwy, Frankston, 3199, Australia, 61 431617602, violetta.shersher@monash.edu %K communication %K patient-provider communication, patient education, taxonomy %D 2020 %7 14.7.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Currently, there is no available standardized taxonomy of defined communication techniques and aids used by healthcare providers during patient consultations. It is challenging to identify communication techniques that contribute to effective healthcare provider and patient consultations and to replicate communication interventions in research. Objective: The aim of this paper is to describe a protocol for the development and pilot of a taxonomy of communication techniques and aids used by healthcare providers during patient consultations. Methods: A systematic review will be completed to identify eligible studies. Extracted techniques and aids will be organized into a preliminary taxonomy by a multidisciplinary team. The preliminary taxonomy will be piloted by two groups: research assistants trained in taxonomy application and healthcare providers and healthcare professional students not trained in taxonomy use. The pilot will use custom developed video footage of health provider and patient interactions. Interrater validity and interview feedback will be used to inform a Delphi panel of multidisciplinary healthcare providers and patient experts when they convene to finalize the preliminary taxonomy. Results: This study was funded in November 2017 by the Monash University Interdisciplinary Research Seed Funding Scheme. Data collection commenced in March 2018, and data analysis is in progress. We expect the results to be published in 2021. Conclusions: This is the first known attempt to develop a defined and standardized taxonomy of communication techniques and aids used by healthcare providers in patient consultations. The findings will be used to inform future research by providing a detailed taxonomy of healthcare providers’ communication techniques and standardized definitions. International Registered Report Identifier (IRRID): DERR1-10.2196/16801 %M 32673277 %R 10.2196/16801 %U https://www.researchprotocols.org/2020/7/e16801 %U https://doi.org/10.2196/16801 %U http://www.ncbi.nlm.nih.gov/pubmed/32673277 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 3 %N 2 %P e17182 %T Video Narratives Intervention Among Stroke Survivors: Feasibility and Acceptability Study of a Randomized Controlled Trial %A Appalasamy,Jamuna Rani %A Joseph,Joyce Pauline %A Seeta Ramaiah,Siva %A Md Zain,Anuar Zaini %A Quek,Kia Fatt %A Tha,Kyi Kyi %+ School of Pharmacy, Monash University Malaysia, Jalan Lagoon Selatan, Bandar Sunway, Selangor, 47500, Malaysia, 60 123253775, jamuna.rani@monash.edu %K feasibility and acceptability %K medication understanding %K use self-efficacy %K stroke %K video narratives %D 2020 %7 10.7.2020 %9 Original Paper %J JMIR Aging %G English %X Background: A large number of stroke survivors worldwide suffer from moderate to severe disability. In Malaysia, long-term uncontrolled stroke risk factors lead to unforeseen rates of recurrent stroke and a growing incidence of stroke occurrence across ages, predominantly among the elderly population. This situation has motivated research efforts focused on tapping into patient education, especially related to patient self-efficacy of understanding and taking medication appropriately. Video narratives integrated with health belief model constructs have demonstrated potential impacts as an aide to patient education efforts. Objective: The aim of this study was to investigate the feasibility and acceptability of study procedures based on a randomized controlled trial protocol of a video narratives intervention among poststroke patients. We also aimed to obtain preliminary findings of video narratives related to medication understanding and use self-efficacy (MUSE) and blood pressure control. Methods: A parallel group randomized controlled trial including a control group (without video viewing) and an intervention group (with video viewing) was conducted by researchers at a neurology outpatient clinic on poststroke patients (N=54). Baseline data included patients’ sociodemographic characteristics, medical information, and all outcome measures. Measurements of MUSE and blood pressure following the trial were taken during a 3-month follow-up period. Feasibility of the trial was assessed based on recruitment and study completion rates along with patients’ feedback on the burden of the study procedures and outcome measures. Acceptability of the trial was analyzed qualitatively. Statistical analysis was applied to ascertain the preliminary results of video narratives. Results: The recruitment rate was 60 out of 117 patients (51.3%). Nevertheless, the dropout rate of 10% was within the acceptable range. Patients were aged between 21 and 74 years. Nearly 50 of the patients (>85%) had adequate health literacy and exposure to stroke education. Most of the patients (>80%) were diagnosed with ischemic stroke, whereby the majority had primary hypertension. The technicalities of randomization and patient approach were carried out with minimal challenge and adequate patient satisfaction. The video contents received good responses with respect to comprehension and simplicity. Moreover, an in-depth phone interview with 8 patients indicated that the video narratives were considered to be useful and inspiring. These findings paralleled the preliminary findings of significant improvement within groups in MUSE (P=.001) and systolic blood pressure control (P=.04). Conclusions: The queries and feedback from each phase in this study have been acknowledged and will be taken forward in the full trial. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN 12618000174280; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373554 %M 32469839 %R 10.2196/17182 %U https://aging.jmir.org/2020/2/e17182 %U https://doi.org/10.2196/17182 %U http://www.ncbi.nlm.nih.gov/pubmed/32469839 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 7 %P e15994 %T A Web-Based Decision Aid (myAID) to Enhance Quality of Life, Empowerment, Decision Making, and Disease Control for Patients With Ulcerative Colitis: Protocol for a Cluster Randomized Controlled Trial %A Kim,Andrew H %A Girgis,Afaf %A Karimi,Neda %A Sechi,Alexandra J %A Descallar,Joseph %A Andrews,Jane M %A Siegel,Corey A %A Connor,Susan J %+ Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, The University of New South Wales, Department of Gastroenterology, Liverpool Hospital, Sydney, , Australia, 61 2 8738 4085, Susan.Connor1@health.nsw.gov.au %K shared decision making %K decision aid %K ulcerative colitis %D 2020 %7 10.7.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Patients with ulcerative colitis (UC) often face complex treatment decisions. Although shared decision making (SDM) is considered important, tools to facilitate this are currently lacking for UC. A recent pilot study of a novel Web-based decision aid (DA), my Actively Informed Decision (myAID), has suggested its acceptability and feasibility for informing treatment decisions and facilitating SDM in clinical practice. Objective: This paper describes the study protocol of the myAID study to assess the clinical impact of systematic implementation of myAID in routine UC management. Methods: The myAID study is a multicenter, cluster randomized controlled trial (CRCT) involving 22 Australian sites that will assess the clinical efficacy of routine use of myAID (intervention) against usual care without access to myAID (control) for UC patients. Participating sites (clusters) will be randomly allocated in a 1:1 ratio between the 2 arms. Patients making a new treatment decision beyond 5-aminosalicylate agents will be eligible to participate. Patients allocated to the intervention arm will view myAID at the time of recruitment and have free access to it throughout the study period. The effect of the myAID intervention will be assessed using the results of serial Web-based questionnaires and fecal calprotectin at baseline, 2 months, 6 months, and 12 months. A Web-based questionnaire within 2-4 weeks of referral will determine early change in quality of decision making and anxiety (both arms) and intervention acceptability (intervention arm only). Results: Study recruitment and funding began in October 2016, and recruitment will continue through 2020, for a minimum of 300 study participants at baseline at the current projection. The primary outcome will be health-related quality of life (Assessment of Quality of Life-8D), and secondary outcomes will include patient empowerment, quality of decision making, anxiety, work productivity and activity impairment, and disease activity. In addition, we aim to determine the predictors of UC treatment decisions and outcomes and the cost-effectiveness of implementing myAID in routine practice. Feedback obtained about myAID will be used to determine areas for improvement and barriers to its implementation. Completion of data collection and publication of study results are anticipated in 2021. Conclusions: myAID is a novel Web-based DA designed to facilitate SDM in UC management. The results of this CRCT will contribute new evidence to the literature in comparing outcomes between patients who routinely access such decision support intervention versus those who do not, across multiple large inflammatory bowel disease centers as well as community-based private practices in Australia. Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12617001246370 http://anzctr.org.au/Trial/ Registration/TrialReview.aspx?ACTRN=12617001246370 International Registered Report Identifier (IRRID): DERR1-10.2196/15994 %M 32673257 %R 10.2196/15994 %U https://www.researchprotocols.org/2020/7/e15994 %U https://doi.org/10.2196/15994 %U http://www.ncbi.nlm.nih.gov/pubmed/32673257 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 3 %N 1 %P e20321 %T Digital Media as a Proponent for Healthy Aging in the Older Chinese American Population: Longitudinal Analysis %A Shu,Sara %A Woo,Benjamin K P %+ University of California, Los Angeles, 14445 Olive View Drive, Sylmar, CA, 91342, United States, 1 747 210 3830, sarashu@gmail.com %K geriatrics %K health promotion %K health education %K social media %K Parkinson disease %K fall prevention %K oral health %K pulmonary disease %K gastrointestinal health %D 2020 %7 16.6.2020 %9 Original Paper %J JMIR Aging %G English %X Background: Ensuring health literacy among underserved populations is essential amid an aging population. Accessible and appropriate (both culturally and linguistically) information is important when considering digital media education for older Chinese Americans. Objective: This study aims to investigate how social media fare over time in disseminating health information and how we may most effectively educate this population. Methods: For this study, 5 geriatric-themed educational videos about Parkinson disease, fall prevention, gastrointestinal health, oral health, and pulmonary disease were uploaded to YouTube. Data were collected over a 40-month period. Descriptive statistics and chi-square analysis were used to compare results from the first and second 20-month periods. Results: In 40 months, the 5 videos in aggregate accrued 1171.1 hours of watch time, 7299 views, and an average view duration of 9.6 minutes. Comparing the first and second 20-month periods, there was a significant increase in mobile device usage, from 79.4% (3541/4458) to 83.3% (2367/2841). There was no significant difference in the usage of various external traffic sources and methods of sharing, with WhatsApp accounting for the majority of sharing in both 20-month periods. Conclusions: Our study provides insight into where to focus future strategies to optimize digital media content, and how to best recruit, direct, and disseminate health education to an older adult Chinese American population. Combining the success of YouTube, social media, and messaging platforms such as WhatsApp can help to transcend cultural and linguistic barriers to promote healthy aging. %M 32543447 %R 10.2196/20321 %U http://aging.jmir.org/2020/1/e20321/ %U https://doi.org/10.2196/20321 %U http://www.ncbi.nlm.nih.gov/pubmed/32543447 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 6 %P e15080 %T A Web-Based Intervention to Reduce Decision Conflict Regarding HIV Pre-Exposure Prophylaxis: Protocol for a Clinical Trial %A Nelson,LaRon E %A Ajiboye,Wale %A Djiadeu,Pascal %A Odhiambo,Apondi J %A Pedersen,Cheryl %A Ramos,S Raquel %A Lofters,Aisha %A Mbuagbaw,Lawrence %A Williams,Geoffrey %+ Yale School of Nursing, Yale University, 222 York St, New Haven, CT, 06477, United States, 1 203 785 5797, laron.nelson@yale.edu %K pre-exposure prophylaxis %K PrEP %K HIV %K blacks %K prevention %K smartphone %K mobile phone %D 2020 %7 15.6.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: HIV pre-exposure prophylaxis (PrEP) is recommended for populations at high ongoing risk for infection. There are noted racial disparities in the incidence of HIV and other sexually transmitted infections (STIs) for African, Caribbean, and Canadian Black (ACB, black) populations in Ontario, Canada. Although blacks represent only 4.7% of the Ontario population, they account for 30% of HIV prevalence and 25% of new infections in the province. The existing clinical public health practice toolkit has not been sufficient to optimize PrEP uptake, despite the overwhelming evidence of PrEP’s efficacy for reducing HIV transmission risk. Since its establishment as an effective HIV prevention tool, the major focus in behavioral research on PrEP has been on understanding and improving adherence. To date, there is no known formalized intervention in place designed to support ACB men and women at high risk of making high-quality decisions regarding the adoption of PrEP as an HIV prevention practice. Objective: We propose 2 aims to address these gaps in HIV prevention and implementation science. First, the Ottawa Decision Support Framework (ODSF) for use in the PrEP decisional needs of black patients was adapted. Second, the decision support intervention to estimate effect size compared with control conditions in reducing decision conflict and predicting adherence over 60 days was pilot tested. Methods: In aim 1, we propose a cross-sectional qualitative descriptive study using data collected from key informant interviews with eligible PrEP patients (n=30) and surveys with health professionals (n=20) involved in HIV PrEP management. Data obtained from aim 1 will be used to develop a decision support intervention based on the ODSF. In aim 2, the adopted decision support intervention using a block-randomized design to estimate effect size compared with control conditions in reducing decision conflict and predicting adherence over 60 days was pilot tested. Hypothesis testing will be de-emphasized in favor of generating effect size estimates. Results: A research award was funded on March 25, 2017 (Multimedia Appendix 1). Ethical approval was received on March 25, 2019 (with supplemental approval received on May 10, 2019). Data collection started on April 9, 2019. As of September 30, 2019, we enrolled 29 patients and 24 health care providers for aim 1. We are currently analysing the data collected for aim 1. Aim 2 is scheduled to start in May 2020. Conclusions: This study will provide evidence-based information on the decisional needs of black patients who are at risk of HIV and have been offered PrEP. The study will also test the effect of decision support intervention in reducing decision conflict, adoption of PrEP, and adherence to PrEP. International Registered Report Identifier (IRRID): PRR1-10.2196/15080 %M 32348250 %R 10.2196/15080 %U https://www.researchprotocols.org/2020/6/e15080 %U https://doi.org/10.2196/15080 %U http://www.ncbi.nlm.nih.gov/pubmed/32348250 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 6 %P e18585 %T Development of an Online Health Care Assessment for Preventive Medicine: A Machine Learning Approach %A Yu,Cheng-Sheng %A Lin,Yu-Jiun %A Lin,Chang-Hsien %A Lin,Shiyng-Yu %A Wu,Jenny L %A Chang,Shy-Shin %+ Department of Family Medicine, School of Medicine, College of Medicine, Taipei Medical University, 250 Wuxing St, Taipei, 11031, Taiwan, 886 2 23565926, sschang0529@gmail.com %K machine learning %K online healthcare assessment %K medical informatics %K preventive medicine %D 2020 %7 5.6.2020 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 32501272 %R 10.2196/18585 %U https://www.jmir.org/2020/6/e18585 %U https://doi.org/10.2196/18585 %U http://www.ncbi.nlm.nih.gov/pubmed/32501272 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 6 %P e17104 %T Modifications to Electronic Nicotine Delivery Systems: Content Analysis of YouTube Videos %A Massey,Zachary B %A Li,Yachao %A Holli,Jessica %A Churchill,Victoria %A Yang,Bo %A Henderson,Katherine %A Ashley,David L %A Huang,Jidong %A Popova,Lucy %+ School of Public Health, Georgia State University, P.O. Box 3995, Atlanta, GA, 30302-3995, United States, 1 4044139338, lpopova1@gsu.edu %K ENDS modifications %K YouTube %K coils %K e-liquid %K vaping %D 2020 %7 2.6.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: As user modification can alter the addictiveness and toxicity of electronic nicotine delivery systems (ENDS), more research is needed to understand the types, motivations, risks, and information sources that lead to these product alterations. YouTube has been identified as a major platform where ENDS users obtain and share information about ENDS products and modifications. However, a comprehensive study of ENDS modification videos on YouTube is lacking. Objective: This study aimed to analyze the content of YouTube videos depicting modifications of ENDS. Methods: YouTube was searched in March 2019 to identify videos depicting ENDS modifications. Search terms were derived from interviews with ENDS users and current literature. We used 28 search phrases that combined the words vape and vaping with modification-related key terms (eg, custom build, modification, and dripping). The final sample included 168 videos. Results: Videos were 1 to 108 min long (median 9.55). Presenters were largely male (117/168, 69.6%), white (94/168, 56.0%), and older than 25 years (94/168, 56.0%). Most videos gave how to instructions (148/168, 88.1%), but few offered warnings (30/168, 17.9%) or mentioned commercial alternatives to modifications they presented (16/168, 9.5%). The ENDS devices most often featured were drippers (63/168, 37.5%) and refillable tanks (37/168, 22.0%). The most often modified ENDS components were coils (82/168, 48.8%) and e-liquids (34/168, 20.2%), which included adding other substances, such as cannabis, to the e-liquids (6/168, 3.6%). Most videos portrayed ENDS modifications positively (106/168, 63.1% positive; 60/168, 35.7% neutral; and 2/168, 1.2% negative) and were either neutral or positive in their overall portrayal of ENDS devices (78/168, 46.4% positive; 89/168, 53.0% neutral; and 1/168, 0.6% negative). Conclusions: This study identified several concerning trends in popular YouTube videos on ENDS modifications, including lack of warnings, the addition of marijuana derivatives to e-liquids, and the positive portrayal of ENDS devices and modifications. By identifying the types of modifications (coil and e-liquid being the most prevalent), this study sets an agenda for research on the effects of modifications. %M 32348288 %R 10.2196/17104 %U https://www.jmir.org/2020/6/e17104 %U https://doi.org/10.2196/17104 %U http://www.ncbi.nlm.nih.gov/pubmed/32348288 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 3 %N 1 %P e14411 %T Information About Sunscreen on YouTube and Considerations for Sun Safety Promotion: Content Analysis %A Julian,Anne K %A Welch,Jessica %A Bean,Maddison M %A Shahid,Sarah %A Perna,Frank M %+ Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Dr, Rockville, MD, 20877, United States, 1 240 276 6175, anne.julian@nih.gov %K sunscreen %K social media %K sun safety %K cancer prevention %D 2020 %7 2.6.2020 %9 Original Paper %J JMIR Dermatol %G English %X Background: Sunscreen use is a popular sun protection method; however, application of sunscreen rarely meets the standards recommended for effectiveness. Access to information about how to effectively use sunscreen may play a role in proper sunscreen application. The internet is a common health information source; however, the quality of sunscreen-related content varies. Objective: The objective of this study was to examine information about sunscreen in YouTube videos by video source. Methods: In November 2017, the authors identified the 20 most popular YouTube videos (sorted by view count and relevance) for each of these 5 search terms: sunscreen cancer, sunscreen health, sunscreen information, sunscreen ingredients, and sunscreen natural. The inclusion criteria were English language and view count >1000 (N=111 unique videos). We double-coded videos for standard recommendations for sunscreen use (eg, apply 20 minutes before sun exposure), use of outdated terminology, and recommendation of complementary sun safety strategies. Results: The view counts ranged from 1100 to 671,142 (median 17,774, SD 109,651) and the average daily views ranged from 1 to 1448 (median 23, SD 234). End users (46/111, 41.4%) and health care providers (24/111, 21.6%) were the most common sources, and none of the most popular videos were produced by federal agencies or cancer-related nongovernmental organizations. Health care provider videos included marginally more recommendations than end user videos (mean 1.46, SD 1.96 vs mean 1.05, SD 1.20), but few (19/111, 17.1%) mentioned reapplication. The videos were generally positive toward sunscreen (82/111, 73.9%); however, some videos were negative (29/111, 26.1%), with warnings about the health risks of chemical sunscreens and their ingredients. Do-it-yourself sunscreen tutorials represented 19/111 (17.1%) of the sample. Conclusions: YouTube is a potential source for disseminating sun safety messages; however, the quality of its sunscreen content varies. Most of the videos in our study failed to include important sunscreen use recommendations. Clinicians should be prepared to address the information needs of patients by discussing effective, evidence-based sunscreen application and recommending a combined sun safety approach. %R 10.2196/14411 %U http://derma.jmir.org/2020/1/e14411/ %U https://doi.org/10.2196/14411 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 5 %P e17002 %T Exploring the Vast Choice of Question Prompt Lists Available to Health Consumers via Google: Environmental Scan %A Tracy,Marguerite Clare %A Shepherd,Heather L %A Patel,Pinika %A Trevena,Lyndal Jane %+ Ask, Share, Know: Rapid Evidence for General Practice Decisions Centre for Research Excellence, School of Public Health, The University of Sydney, Room 323A, Edward Ford Building A27, NSW, 2006, Australia, 61 293512942, marguerite.tracy@sydney.edu.au %K question prompt list %K shared decision making %K environmental scan %D 2020 %7 29.5.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: There is increasing interest in shared decision making (SDM) in Australia. Question prompt lists (QPLs) support question asking by patients, a key part of SDM. QPLs have been studied in a variety of settings, and increasingly the internet provides a source of suggested questions for patients. Environmental scans have been shown to be useful in assessing the availability and quality of online SDM tools. Objective: This study aimed to assess the number and readability of QPLs available to users via Google.com.au. Methods: Our environmental scan used search terms derived from literature and reputable websites to search for QPLs available via Google.com.au. Following removal of duplicates from the 4000 URLs and 22 reputable sites, inclusion and exclusion criteria were applied to create a list of unique QPLs. A sample of 20 QPLs was further assessed for list length, proxy measures of quality such as a date of review, and evidence of doctor endorsement. Readability of the sample QPL instructions and QPLs themselves was assessed using Flesch Reading Ease and Flesch-Kincaid Grade Level scores. Results: Our environmental scan identified 173 unique QPLs available to users. Lists ranged in length from 1 question to >200 questions. Of our sample, 50% (10/20) had a listed date of creation or update, and 60% (12/20) had evidence of authorship or source. Flesch-Kincaid Grade Level scores for instructions were higher than for the QPLs (grades 10.3 and 7.7, respectively). There was over a 1 grade difference between QPLs from reputable sites compared with other sites (grades 4.2 and 5.4, respectively). Conclusions: People seeking questions to ask their doctor using Google.com.au encounter a vast number of question lists that they can use to prepare for consultations with their doctors. Markers of the quality or usefulness of various types of online QPLs, either surrogate or direct, have not yet been established, which makes it difficult to assess the value of the abundance of lists. Doctor endorsement of question asking has previously been shown to be an important factor in the effectiveness of QPLs, but information regarding this is not readily available online. Whether these diverse QPLs are endorsed by medical practitioners warrants further investigation. %M 32469321 %R 10.2196/17002 %U http://www.jmir.org/2020/5/e17002/ %U https://doi.org/10.2196/17002 %U http://www.ncbi.nlm.nih.gov/pubmed/32469321 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 5 %P e16137 %T A Patient Safety Educational Tool for Patients With Chronic Kidney Disease: Development and Usability Study %A Bowman,Cassandra %A Lunyera,Joseph %A Alkon,Aviel %A Boulware,L Ebony %A St Clair Russell,Jennifer %A Riley,Jennie %A Fink,Jeffrey C %A Diamantidis,Clarissa %+ Division of General Internal Medicine, Duke University School of Medicine, 200 Morris Street, Durham, NC, 27701, United States, 1 919 668 1261, clarissa.diamantidis@duke.edu %K patient safety %K chronic kidney disease %K patient education %K mhealth %D 2020 %7 28.5.2020 %9 Original Paper %J JMIR Form Res %G English %X Background: Chronic kidney disease (CKD) is a health condition that threatens patient safety; however, few interventions provide patient-centered education about kidney-specific safety hazards. Objective: We sought to develop and test the usability of a mobile tablet–based educational tool designed to promote patient awareness of relevant safety topics in CKD. Methods: We used plain language principles to develop content for the educational tool, targeting four patient-actionable safety objectives that are relevant for individuals with CKD. These four objectives included avoidance of nonsteroidal anti-inflammatory drugs (NSAIDs); hypoglycemia awareness (among individuals with diabetes); temporary cessation of certain medications during acute volume depletion to prevent acute kidney injury (ie, “sick day protocol”); and contrast dye risk awareness. Our teaching strategies optimized human-computer interaction and content retention using audio, animation, and clinical vignettes to reinforce themes. For example, using a vignette of a patient with CKD with pain and pictures of common NSAIDs, participants were asked “Which of the following pain medicines are safe for Mr. Smith to take for his belly pain?” Assessment methods consisted of preknowledge and postknowledge surveys, with provision of correct responses and explanations. Usability testing of the tablet-based tool was performed among 12 patients with any stage of CKD, and program tasks were rated upon completion as no error, noncritical error (self-corrected), or critical error (needing assistance). Results: The 12 participants in this usability study were predominantly 65 years of age or older (n=7, 58%) and female (n=7, 58%); all participants owned a mobile device and used it daily. Among the 725 total tasks that the participants completed, there were 31 noncritical errors (4.3%) and 15 critical errors (2.1%); 1 participant accounted for 30 of the total errors. Of the 12 participants, 10 (83%) easily completed 90% or more of their tasks. Most participants rated the use of the tablet as very easy (n=7, 58%), the activity length as “just right” (rather than too long or too short) (n=10, 83%), and the use of clinical vignettes as helpful (n=10, 83%); all participants stated that they would recommend this activity to others. The median rating of the activity was 8 on a scale of 1 to 10 (where 10 is best). We incorporated all participant recommendations into the final version of the educational tool. Conclusions: A tablet-based patient safety educational tool is acceptable and usable by individuals with CKD. Future studies leveraging iterations of this educational tool will explore its impact on health outcomes in this high-risk population. %M 32463366 %R 10.2196/16137 %U http://formative.jmir.org/2020/5/e16137/ %U https://doi.org/10.2196/16137 %U http://www.ncbi.nlm.nih.gov/pubmed/32463366 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 5 %P e15497 %T The Effect of a Customized Nutrient-Profiling Approach on the Glycated Hemoglobin Levels of Patients With Type 2 Diabetes: Quasi-Experimental Study %A Alrige,Mayda %A Alharbey,Riad %A Chatterjee,Samir %+ King Abdulaziz University, 6643 Abdullah Sulayman, Jeddah, 21589, Saudi Arabia, 966 12 695 2000, malraegi@kau.edu.sa %K mHealth %K consumer health informatics %K diet therapy %K nutrient profiling %K Hb A1c %D 2020 %7 19.5.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Presently, dietary management approaches are mostly oriented toward using calorie-counting and diet-tracking tools that draw our attention away from the nutritional value of our food. To improve individuals’ dietary behavior, primarily that of people with type 2 diabetes, a simple technique is needed to increase their understanding of the nutritional content of their food. Objective: This study aimed to design, develop, and evaluate a customized nutrient-profiling tool called EasyNutrition. EasyNutrition was built to introduce the new concept of nutrient profiling by applying the Intelligent Nutrition Engine, an algorithm that we developed for ranking different food recipes based on their nutritional value. This study also aimed to investigate the efficacy of EasyNutrition in lowering glycated hemoglobin (HbA1c) levels and improving dietary habits among people with type 2 diabetes. Methods: We evaluated the utility of EasyNutrition using design science research in three sequential stages. This paper has elaborated on the third stage to investigate the efficacy of EasyNutrition in managing type 2 diabetes. A quasi-experimental study was conducted in a diabetes treatment center (n=28). The intervention group utilized EasyNutrition over 3 months, whereas participants in the control group utilized the standard of care provided by the center. Dietary habits and HbA1c levels were measured to capture any change before and after experimenting with EasyNutrition. Results: The intervention group (n=9) exhibited a statistically significant change between the pre- and postexposure results of their HbA1c (t9=2.427; P=.04). Their HbA1c dropped from 8.13 to 6.72. This provided preliminary evidence of the efficacy of using a customized nutrient-profiling app in reducing HbA1c for people with type 2 diabetes. Conclusions: This study adds to the evidence base that a nutrient-profiling strategy may be a modern adjunct to diabetes dietary management. In conjunction with reliable dietary education provided by a registered dietician, EasyNutrition may have some beneficial effects to improve the dietary habits of people with type 2 diabetes. %M 32427107 %R 10.2196/15497 %U https://www.jmir.org/2020/5/e15497 %U https://doi.org/10.2196/15497 %U http://www.ncbi.nlm.nih.gov/pubmed/32427107 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 6 %N 2 %P e19161 %T Knowledge and Behaviors Toward COVID-19 Among US Residents During the Early Days of the Pandemic: Cross-Sectional Online Questionnaire %A Clements,John M %+ Master of Public Health Program, Division of Public Health, College of Human Medicine, Michigan State University, 130 E 2nd Street, Suite 202, Flint, MI, 48502, United States, 1 989 708 6338, clemen69@msu.edu %K public health %K surveillance %K COVID-19 %K knowledge %K behavior %K outbreak %K infectious disease %K health information %D 2020 %7 8.5.2020 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: The early days of the coronavirus disease (COVID-19) pandemic in the United States brought uncertainty in the knowledge about COVID-19 and what to do about it. It is necessary to understand public knowledge and behaviors if we are to effectively address the pandemic. Objective: The aim of this study is to test the hypothesis that knowledge about COVID-19 influences participation in different behaviors including self-reports of purchasing more goods than usual, attending large gatherings, and using medical masks. Methods: This study was funded and approved by the Institutional Review Board on March 17, 2020. The cross-sectional online survey of 1034 US residents aged 18 years or older was conducted on March 17, 2020. Results: For every point increase in knowledge, the odds of participation in purchasing more goods (odds ratio [OR] 0.88, 95% CI 0.81-0.95), attending large gatherings (OR 0.87, 95% CI 0.81-0.93), and using medical masks (OR 0.56, 95% CI 0.50-0.62) decreased by 12%, 13%, and 44%, respectively. Gen X and millennial participants had 56% and 76% higher odds, respectively, of increased purchasing behavior compared to baby boomers. The results suggest that there is a politicization of response recommendations. Democrats had 30% lower odds of attending large gatherings (OR 0.70, 95% CI 0.50-0.97) and 48% lower odds of using medical masks (OR 0.52, 95% CI 0.34-0.78) compared to Republicans. Conclusions: This survey is one of the first attempts to study determinants of knowledge and behaviors in response to the COVID-19 pandemic in the United States. A national, coordinated effort toward a pandemic response may ensure better compliance with behavioral recommendations to address this public health emergency. %M 32369759 %R 10.2196/19161 %U http://publichealth.jmir.org/2020/2/e19161/ %U https://doi.org/10.2196/19161 %U http://www.ncbi.nlm.nih.gov/pubmed/32369759 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 8 %N 5 %P e15502 %T Preparing African American Men to Make Informed Prostate Cancer Screening Decisions: Development and Pilot Testing of an Interactive Online Decision Aid %A Allen,Jennifer Dacey %A Reich,Amanda %A Cuevas,Adolfo G %A Ladin,Keren %+ Department of Community Health, Tufts University, 574 Boston Ave, Suite 208, Medford, MA, 02421, United States, 1 617 627 3233, jennifer.allen@tufts.edu %K decision support techniques %K prostate neoplasms %K early detection of cancer %K decision making (shared) %K men’s health %K minority health %D 2020 %7 5.5.2020 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X 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. %M 32369032 %R 10.2196/15502 %U https://mhealth.jmir.org/2020/5/e15502 %U https://doi.org/10.2196/15502 %U http://www.ncbi.nlm.nih.gov/pubmed/32369032 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 8 %N 4 %P e17642 %T Using Natural Language Processing Techniques to Provide Personalized Educational Materials for Chronic Disease Patients in China: Development and Assessment of a Knowledge-Based Health Recommender System %A Wang,Zheyu %A Huang,Haoce %A Cui,Liping %A Chen,Juan %A An,Jiye %A Duan,Huilong %A Ge,Huiqing %A Deng,Ning %+ Ministry of Education Key Laboratory of Biomedical Engineering, College of Biomedical Engineering and Instrument Science, Zhejiang University, 38 Zheda Rd, Zhouyiqing Bldg 512, Yuquan Campus, Hangzhou, China, 86 571 2295 2693, zju.dengning@gmail.com %K health education %K ontology %K natural language processing %K chronic disease %K recommender system %D 2020 %7 23.4.2020 %9 Original Paper %J JMIR Med Inform %G English %X Background: Health education emerged as an important intervention for improving the awareness and self-management abilities of chronic disease patients. The development of information technologies has changed the form of patient educational materials from traditional paper materials to electronic materials. To date, the amount of patient educational materials on the internet is tremendous, with variable quality, which makes it hard to identify the most valuable materials by individuals lacking medical backgrounds. Objective: The aim of this study was to develop a health recommender system to provide appropriate educational materials for chronic disease patients in China and evaluate the effect of this system. Methods: A knowledge-based recommender system was implemented using ontology and several natural language processing (NLP) techniques. The development process was divided into 3 stages. In stage 1, an ontology was constructed to describe patient characteristics contained in the data. In stage 2, an algorithm was designed and implemented to generate recommendations based on the ontology. Patient data and educational materials were mapped to the ontology and converted into vectors of the same length, and then recommendations were generated according to similarity between these vectors. In stage 3, the ontology and algorithm were incorporated into an mHealth system for practical use. Keyword extraction algorithms and pretrained word embeddings were used to preprocess educational materials. Three strategies were proposed to improve the performance of keyword extraction. System evaluation was based on a manually assembled test collection for 50 patients and 100 educational documents. Recommendation performance was assessed using the macro precision of top-ranked documents and the overall mean average precision (MAP). Results: The constructed ontology contained 40 classes, 31 object properties, 67 data properties, and 32 individuals. A total of 80 SWRL rules were defined to implement the semantic logic of mapping patient original data to the ontology vector space. The recommender system was implemented as a separate Web service connected with patients' smartphones. According to the evaluation results, our system can achieve a macro precision up to 0.970 for the top 1 recommendation and an overall MAP score up to 0.628. Conclusions: This study demonstrated that a knowledge-based health recommender system has the potential to accurately recommend educational materials to chronic disease patients. Traditional NLP techniques combined with improvement strategies for specific language and domain proved to be effective for improving system performance. One direction for future work is to explore the effect of such systems from the perspective of patients in a practical setting. %M 32324148 %R 10.2196/17642 %U http://medinform.jmir.org/2020/4/e17642/ %U https://doi.org/10.2196/17642 %U http://www.ncbi.nlm.nih.gov/pubmed/32324148 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 6 %N 2 %P e19145 %T The Role of YouTube and the Entertainment Industry in Saving Lives by Educating and Mobilizing the Public to Adopt Behaviors for Community Mitigation of COVID-19: Successive Sampling Design Study %A Basch,Charles E %A Basch,Corey H %A Hillyer,Grace C %A Jaime,Christie %+ Teachers College, Columbia University, 525 W 120th St, New York, NY, 10027, United States, 1 212 678 3983, ceb35@columbia.edu %K YouTube %K COVID-19 %K social media %K pandemic %K outbreak %K infectious disease %K public health %K prevention %D 2020 %7 21.4.2020 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Effective community mitigation through voluntary behavior change is currently the best way to reduce mortality caused by coronavirus disease (COVID-19). This study builds on our prior study based on the scientific premise that YouTube is one of the most effective ways to communicate and mobilize the public in community mitigation to reduce exposure to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Objective: Because of the rapidly changing nature of YouTube in the context of the COVID-19 pandemic, we conducted a follow-up study to document how coverage of preventive behaviors for effective community mitigation has changed. Methods: A successive sampling design was used to compare coverage of behaviors to mitigate community transmission of COVID-19 in the 100 most widely viewed YouTube videos in January 2020 and March 2020. Results: Videos in the January and March samples were viewed >125 million times and >355 million times, respectively. Fewer than half of the videos in either sample covered any of the prevention behaviors recommended by the US Centers for Disease Control and Prevention, but many covered key prevention behaviors and were very widely viewed. There were no videos uploaded by entertainment television in the January sample, but this source comprised the majority of videos and garnered the majority of cumulative views in the March sample. Conclusions: This study demonstrates the incredible reach of YouTube and the potential value of partnership with the entertainment industry for communicating and mobilizing the public about community mitigation to reduce mortality from the COVID-19 viral pandemic. %M 32297593 %R 10.2196/19145 %U http://publichealth.jmir.org/2020/2/e19145/ %U https://doi.org/10.2196/19145 %U http://www.ncbi.nlm.nih.gov/pubmed/32297593 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 4 %P e17342 %T Educating Patients by Providing Timely Information Using Smartphone and Tablet Apps: Systematic Review %A Timmers,Thomas %A Janssen,Loes %A Kool,Rudolf B %A Kremer,Jan AM %+ IQ healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, Netherlands, 31 73 644 6069, thomas.timmers@radboudumc.nl %K patient education %K push notification %K self-management %K eHealth %K timely information %K timely education %K smartphone %K tablet computer %K self-care %K mobile phone %D 2020 %7 13.4.2020 %9 Review %J J Med Internet Res %G English %X Background: Patient education is a crucial element within health care. It is a known predictor for increased engagement in shared decision making, improved medication and treatment adherence, higher levels of satisfaction, and even better treatment outcomes. Unfortunately, often patients only remember a very limited amount of medical information. An important reason is that most patients are simply not capable of processing large amounts of new medical information in a short time. Apps for smartphones and tablets have the potential to actively educate patients by providing them with timely information through the use of push notifications. Objective: The objective of this systematic review is to provide an overview of the effects of using smartphone and tablet apps to educate patients with timely education. Within this review, we focused on patients that receive their care in a hospital setting. We assessed the effects of the interventions on outcomes, such as patients’ knowledge about their illness and treatment, adherence to treatment instructions and to medication usage, and satisfaction with the care they received. Methods: A comprehensive search of MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Web of Science was conducted. Randomized controlled trials (RCTs) published between January 2015 and November 2019 were eligible for inclusion. Two reviewers independently searched and screened articles, assessed study quality and risk of bias, and extracted the data. Due to the heterogeneity of populations, interventions, and outcomes, a meta-analysis was not deemed appropriate. Instead, a narrative synthesis is presented. Results: A total of 21 RCTs with 4106 participants were included. Compared to usual care, overall effectiveness of the interventions was demonstrated in 69% of the outcomes. Effectiveness increased to 82% when the intervention had a duration shorter than one month and increased to 78% when the intervention provided at least one push notification per week. The interventions showed the highest effects on satisfaction with information, adherence to treatment instructions and to medication usage, clinical outcomes, and knowledge. Conclusions: This review demonstrates that educating patients with timely medical information through their smartphones or tablets improves their levels of knowledge, medication or treatment adherence, satisfaction, and clinical outcomes, as well as having a positive effect on health care economics. These effects are most pronounced in interventions with a short duration (ie, less than a month) and with a high frequency of messages to patients (ie, once per week or more). With the knowledge that patient education is a predictor for improved outcomes and the fact that patients have obvious difficulties processing large amounts of new medical information, we suggest incorporating the delivery of timely information through smartphone and tablet apps within current medical practices. %M 32281936 %R 10.2196/17342 %U http://www.jmir.org/2020/4/e17342/ %U https://doi.org/10.2196/17342 %U http://www.ncbi.nlm.nih.gov/pubmed/32281936 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 4 %P e17901 %T A Mobile Sexual Health App on Empowerment, Education, and Prevention for Young Adult Men (MyPEEPS Mobile): Acceptability and Usability Evaluation %A Gannon,Brittany %A Davis,Rindcy %A Kuhns,Lisa M %A Rodriguez,Rafael Garibay %A Garofalo,Robert %A Schnall,Rebecca %+ School of Nursing, Columbia University, 560 West 168th Street, New York, NY, 10032, United States, 1 2123426886, rb897@columbia.edu %K young adults %K usability %K HIV %K mHealth %K young men %K mobile phone %D 2020 %7 7.4.2020 %9 Original Paper %J JMIR Form Res %G English %X Background: HIV incidence among young adult men who have sex with men (MSM), particularly among black and Latino men, continues to rise. As such, continued HIV prevention interventions for young MSM of color are of utmost importance. Male Youth Pursuing Empowerment, Education and Prevention around Sexuality (MyPEEPS) Mobile is a comprehensive HIV prevention and sexual health education smartphone app initially created to promote sexual health and HIV prevention among adolescent sexual minority young men aged 13 to 18 years. Objective: The objective of this study was to critically appraise the acceptability and usability of MyPEEPS Mobile for young adult MSM aged 19 to 25 years. Methods: Study participants used the mobile app, completed usability questionnaires and in-depth interviews, and reported their experience using the app. Analysis of interview data was guided by the Unified Theory of Acceptance and Use of Technology (UTAUT) to better understand the usability and acceptability of this intervention for young adults. Interview data were coded using the following constructs from the UTAUT model: performance expectancy, effort expectancy, and social influence. Results: A total of 20 young adult MSM (n=10 in Chicago, Illinois, and n=10 in New York, New York) were enrolled in the study. Participants reported that MyPEEPS Mobile was free of functional problems (Health Information Technology Usability Evaluation Scale scores and Post-Study System Usability Questionnaire scores consistent with high usability), easy to use, and useful, with an engaging approach that increased acceptability, including the use of avatars and animation, and inclusive representation of the diverse identities by race and ethnicity, gender identity, and sexual orientation. Recommended areas for improving MyPEEPS Mobile for the target demographic included more adult-oriented graphics, advanced educational content, scenarios for youth with more sexual experience, and search function to increase accessibility of key content. Conclusions: Overall, young adult MSM aged 19 to 25 years described the MyPEEPS Mobile as educational, informative, and usable for their sexual health education and HIV prevention needs, and they provided actionable recommendations to optimize its use and applicability for this age group. %M 32254043 %R 10.2196/17901 %U https://formative.jmir.org/2020/4/e17901 %U https://doi.org/10.2196/17901 %U http://www.ncbi.nlm.nih.gov/pubmed/32254043 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 4 %P e14504 %T Evaluation of an Educational Health Website on Infections and Antibiotics in England: Mixed Methods, User-Centered Approach %A Allison,Rosalie %A Hayes,Catherine %A Young,Vicki %A McNulty,Cliodna A M %+ Public Health England, Twyver House, Gloucester, GL1 1DQ, United Kingdom, 44 208 495 3258, rosie.allison@phe.gov.uk %K user experience %K usability %K quality %K online %K science %K health %D 2020 %7 6.4.2020 %9 Original Paper %J JMIR Form Res %G English %X Background: e-Bug, an educational health website for teachers and students, aims to help control antibiotic resistance by educating young people about microbes, hygiene, and antibiotic resistance, reducing the incidence of infection and, therefore, the need for antibiotics. The teachers’ section of the e-Bug website has not been evaluated since it was launched in 2009, and worldwide page views have been steadily decreasing since 2013. Objective: This study aimed to apply GoodWeb, a comprehensive framework utilizing methodologies and attributes that are relevant to the digital era, to evaluate and suggest improvements to the e-Bug website. Methods: Electronic questionnaires and face-to-face completion of task scenarios were used to assess content, ease of use, interactivity, technical adequacy, appearance, effectiveness, efficiency, and learnability of the teachers’ section of the e-Bug website. Results: A total of 106 teachers evaluated the e-Bug website; 97.1% (103/106) of them reported that they would use e-Bug, and 98.1% (104/106) of them reported that they would recommend it to others. Participants thought that there was a niche for e-Bug because of the way the resources fit into the national curriculum. Suggestions for improvements included changing the menu indication by highlighting the current page or deactivating links, improving home page indication, and providing a preview of resources when hovering the mouse over hyperlinks. Additional features requested by users included a search function and access to training opportunities. Conclusions: This paper reports that the GoodWeb framework was successfully applied to evaluate the e-Bug website, and therefore, it could be used to guide future website evaluations in other fields. Results from this study will be used to appraise the current quality and inform any future changes, modifications, and additions to e-Bug. %M 32203932 %R 10.2196/14504 %U https://formative.jmir.org/2020/4/e14504 %U https://doi.org/10.2196/14504 %U http://www.ncbi.nlm.nih.gov/pubmed/32203932 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 4 %P e18790 %T Use of Rapid Online Surveys to Assess People's Perceptions During Infectious Disease Outbreaks: A Cross-sectional Survey on COVID-19 %A Geldsetzer,Pascal %+ Division of Primary Care and Population Health, Department of Medicine, Stanford University, 1265 Welch Road, Stanford, CA, 94035, United States, 1 6507238596, pgeldsetzer@stanford.edu %K rapid online surveys %K perceptions %K knowledge %K coronavirus %K SARS-CoV-2 %K pandemic %K infectious disease %K outbreak %K survey %K COVID-19 %K public health %D 2020 %7 2.4.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Given the extensive time needed to conduct a nationally representative household survey and the commonly low response rate of phone surveys, rapid online surveys may be a promising method to assess and track knowledge and perceptions among the general public during fast-moving infectious disease outbreaks. Objective: This study aimed to apply rapid online surveying to determine knowledge and perceptions of coronavirus disease 2019 (COVID-19) among the general public in the United States and the United Kingdom. Methods: An online questionnaire was administered to 3000 adults residing in the United States and 3000 adults residing in the United Kingdom who had registered with Prolific Academic to participate in online research. Prolific Academic established strata by age (18-27, 28-37, 38-47, 48-57, or ≥58 years), sex (male or female), and ethnicity (white, black or African American, Asian or Asian Indian, mixed, or “other”), as well as all permutations of these strata. The number of participants who could enroll in each of these strata was calculated to reflect the distribution in the US and UK general population. Enrollment into the survey within each stratum was on a first-come, first-served basis. Participants completed the questionnaire between February 23 and March 2, 2020. Results: A total of 2986 and 2988 adults residing in the United States and the United Kingdom, respectively, completed the questionnaire. Of those, 64.4% (1924/2986) of US participants and 51.5% (1540/2988) of UK participants had a tertiary education degree, 67.5% (2015/2986) of US participants had a total household income between US $20,000 and US $99,999, and 74.4% (2223/2988) of UK participants had a total household income between £15,000 and £74,999. US and UK participants’ median estimate for the probability of a fatal disease course among those infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was 5.0% (IQR 2.0%-15.0%) and 3.0% (IQR 2.0%-10.0%), respectively. Participants generally had good knowledge of the main mode of disease transmission and common symptoms of COVID-19. However, a substantial proportion of participants had misconceptions about how to prevent an infection and the recommended care-seeking behavior. For instance, 37.8% (95% CI 36.1%-39.6%) of US participants and 29.7% (95% CI 28.1%-31.4%) of UK participants thought that wearing a common surgical mask was “highly effective” in protecting them from acquiring COVID-19, and 25.6% (95% CI 24.1%-27.2%) of US participants and 29.6% (95% CI 28.0%-31.3%) of UK participants thought it was prudent to refrain from eating at Chinese restaurants. Around half (53.8%, 95% CI 52.1%-55.6%) of US participants and 39.1% (95% CI 37.4%-40.9%) of UK participants thought that children were at an especially high risk of death when infected with SARS-CoV-2. Conclusions: The distribution of participants by total household income and education followed approximately that of the US and UK general population. The findings from this online survey could guide information campaigns by public health authorities, clinicians, and the media. More broadly, rapid online surveys could be an important tool in tracking the public’s knowledge and misperceptions during rapidly moving infectious disease outbreaks. %M 32240094 %R 10.2196/18790 %U http://www.jmir.org/2020/4/e18790/ %U https://doi.org/10.2196/18790 %U http://www.ncbi.nlm.nih.gov/pubmed/32240094 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 6 %N 2 %P e18807 %T Preventive Behaviors Conveyed on YouTube to Mitigate Transmission of COVID-19: Cross-Sectional Study %A Basch,Corey H %A Hillyer,Grace C %A Meleo-Erwin,Zoe C %A Jaime,Christie %A Mohlman,Jan %A Basch,Charles E %+ William Paterson University, University Hall, Wayne, NJ, 07470, United States, 1 9737202603, baschc@wpunj.edu %K YouTube %K COVID-19 %K social media %K pandemic %K outbreak %K infectious disease %K public health %K prevention %D 2020 %7 2.4.2020 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Accurate information and guidance about personal behaviors that can reduce exposure to severe acute respiratory syndrome coronavirus 2 are among the most important elements in mitigating the spread of coronavirus disease 2019 (COVID-19). With over 2 billion users, YouTube is a media channel that millions turn to when seeking information. Objective: At the time of this study, there were no published studies investigating the content of YouTube videos related to COVID-19. This study aims to address this gap in the current knowledge. Methods: The 100 most widely viewed YouTube videos uploaded throughout the month of January 2020 were reviewed and the content covered was described. Collectively, these videos were viewed over 125 million times. Results: Fewer than one-third of the videos covered any of the seven key prevention behaviors listed on the US Centers for Disease Control and Prevention website. Conclusions: These results represent an important missed opportunity for disease prevention. %M 32240096 %R 10.2196/18807 %U http://publichealth.jmir.org/2020/2/e18807/ %U https://doi.org/10.2196/18807 %U http://www.ncbi.nlm.nih.gov/pubmed/32240096 %0 Journal Article %@ 2369-2529 %I JMIR Publications %V 7 %N 1 %P e16101 %T An Internet-Based Consumer Resource for People with Low Back Pain (MyBackPain): Development and Evaluation %A Hodges,Paul William %A Setchell,Jenny %A Nielsen,Mandy %+ The University of Queensland, School of Health and Rehabilitation Sciences, Brisbane, 4072, Australia, 61 404854589, p.hodges@uq.edu.au %K back pain %K patient education %K patient internet portals %K evidence-based health care %K patient involvement %K service user involvement %D 2020 %7 31.3.2020 %9 Viewpoint %J JMIR Rehabil Assist Technol %G English %X People increasingly use the internet to obtain information about health complaints, including low back pain (LBP). LBP is the leading cause of disability internationally, and outcomes are worsening. There is an urgent need for resources that aid improvement of outcomes. There have been calls to engage consumers in the development of resources, but this has rarely been implemented. MyBackPain is a website that was developed with extensive involvement of consumers to ensure that the resource meets their needs for content and presentation. This paper aimed to describe the multistep process undertaken to develop the MyBackPain website and provide an extensive evaluation of its impact. Development of MyBackPain involved 10 steps, many of which have been published in the academic literature. These steps included consultation regarding consumer needs, evaluation of existing internet resources, identification of key messages to be reinforced, identification of frequently asked questions, consensus for content, content development (including development of algorithms to guide tailoring of the user experience), development of consumer-focused evidence-based treatment summaries, development of descriptions of health care providers, and testing. Evaluation included qualitative examination of people’s interactions with the website and its effects on their daily lives and an ongoing randomized controlled trial of impact of use of the site on people’s LBP-related health literacy, clinical outcomes, and treatment choices. It is hoped that the website can aid in the reduction of the massive burden of LBP and provide a template for the development of resources for other conditions. %M 32229467 %R 10.2196/16101 %U http://rehab.jmir.org/2020/1/e16101/ %U https://doi.org/10.2196/16101 %U http://www.ncbi.nlm.nih.gov/pubmed/32229467 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 9 %N 1 %P e13684 %T Improving Patient Preference Elicitation by Applying Concepts From the Consumer Research Field: Narrative Literature Review %A Ver Donck,Niki %A Vander Stichele,Geert %A Huys,Isabelle %+ Health Economics Consultancy, ISMS, Campus Blairon 477, Turnhout, 2300, Belgium, 32 14 701 930, niki.verdonck@student.kuleuven.be %K preference elicitation methods %K decision making %K consumer research methods %D 2020 %7 31.3.2020 %9 Review %J Interact J Med Res %G English %X Background: Although preference research finds its origins in consumer research, preference elicitation methods have increasingly attracted attention in different decision-making contexts in health care. Simulating real-life decision making is believed to be important during consumer preference elicitation. Objective: The aims of this study were to compare the process of decision making between patients and consumers and to identify methods from the consumer research field that could be applied in patient preference elicitation. Methods: A narrative literature review was performed to identify preference elicitation concepts from a consumer context that could offer improvements in health care. Results: The process of decision making between patients and consumers was highly comparable. The following five concepts from the consumer research field that could effectively simulate a real-life decision-making process for applications in health care were identified: simulating alternatives, self-reflection, feedback-driven exploration, separated (adaptive) dual response, and arranging profiles in blocks. Conclusions: Owing to similarities in the decision-making process, patients could be considered as a subgroup of consumers, suggesting that preference elicitation concepts from the consumer field may be relevant in health care. Five concepts that help to simulate real-life decision making have the potential to improve patient preference elicitation. However, the extent to which real decision-making contexts can be mimicked in health care remains unknown. %M 32229460 %R 10.2196/13684 %U http://www.i-jmr.org/2020/1/e13684/ %U https://doi.org/10.2196/13684 %U http://www.ncbi.nlm.nih.gov/pubmed/32229460 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 3 %P e15772 %T Risks and Benefits of Web-Based Patient Narratives: Systematic Review %A Drewniak,Daniel %A Glässel,Andrea %A Hodel,Martina %A Biller-Andorno,Nikola %+ Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, Zurich, 8006, Switzerland, 41 44 634 40 82, daniel.drewniak@ethik.uzh.ch %K patient experiences %K personal narratives as topic %K systematic review %D 2020 %7 26.3.2020 %9 Review %J J Med Internet Res %G English %X 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. %M 32213468 %R 10.2196/15772 %U http://www.jmir.org/2020/3/e15772/ %U https://doi.org/10.2196/15772 %U http://www.ncbi.nlm.nih.gov/pubmed/32213468 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 12 %N 1 %P e13763 %T Crafting Care That Fits: Workload and Capacity Assessments Complementing Decision Aids in Implementing Shared Decision Making %A Wieringa,Thomas H %A Sanchez-Herrera,Manuel F %A Espinoza,Nataly R %A Tran,Viet-Thi %A Boehmer,Kasey %+ Department of Medical Psychology, Amsterdam UMC, van der Boechorststraat 7, Amsterdam, 1081BT, Netherlands, 31 204448352, t.wieringa@amsterdamumc.nl %K decision making %K decision support techniques %K patient-centered care %D 2020 %7 25.3.2020 %9 Viewpoint %J J Participat Med %G English %X About 42% of adults have one or more chronic conditions and 23% have multiple chronic conditions. The coordination and integration of services for the management of patients living with multimorbidity is important for care to be efficient, safe, and less burdensome. Minimally disruptive medicine may optimize this coordination and integration. It is a patient-centered approach to care that focuses on achieving patient goals for life and health by seeking care strategies that fit a patient’s context and are minimally disruptive and maximally supportive. The cumulative complexity model practically orients minimally disruptive medicine–based care. In this model, the patient workload-capacity imbalance is the central mechanism driving patient complexity. These elements should be accounted for when making decisions for patients with chronic conditions. Therefore, in addition to decision aids, which may guide shared decision making, we propose to discuss and clarify a potential workload-capacity imbalance. %R 10.2196/13763 %U http://jopm.jmir.org/2020/1/e13763/ %U https://doi.org/10.2196/13763 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 12 %N 1 %P e14874 %T Traumatic Brain Injury and Sexuality: User Experience Study of an Information Toolkit %A Marier-Deschênes,Pascale %A Gagnon,Marie-Pierre %A Déry,Julien %A Lamontagne,Marie-Eve %+ Université Laval, Department of Rehabilitation, 1050, avenue de la Médecine, Québec, QC, G1V 0A6, Canada, 1 418 656 2131, marie-eve.lamontagne@fmed.ulaval.ca %K user-centered design %K user experience %K traumatic brain injury %K sexuality %K health information %D 2020 %7 18.3.2020 %9 Original Paper %J J Participat Med %G English %X 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. %R 10.2196/14874 %U https://jopm.jmir.org/2020/1/e14874 %U https://doi.org/10.2196/14874 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 3 %P e15578 %T The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review %A van der Smissen,Doris %A Overbeek,Anouk %A van Dulmen,Sandra %A van Gemert-Pijnen,Lisette %A van der Heide,Agnes %A Rietjens,Judith AC %A Korfage,Ida J %+ Department of Public Health, Erasmus MC, University Medical Center Rotterdam, P O Box 2040, Rotterdam, 3000 CA, Netherlands, 31 107038470, d.vandersmissen@erasmusmc.nl %K advance care planning %K Web-based intervention %K decision aids %K patient education %K eHealth %K health communication %K patient-centered care %K chronic disease %D 2020 %7 17.3.2020 %9 Review %J J Med Internet Res %G English %X Background: Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients’ preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and—if appropriate—family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. Objective: This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. Methods: We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs’ content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. Results: Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs—10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). Conclusions: Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs. %M 32181750 %R 10.2196/15578 %U http://www.jmir.org/2020/3/e15578/ %U https://doi.org/10.2196/15578 %U http://www.ncbi.nlm.nih.gov/pubmed/32181750 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 3 %N 1 %P e16095 %T The Difficulty of German Information Booklets on Psoriasis and Psoriatic Arthritis: Automated Readability and Vocabulary Analysis %A Wiesner,Martin %A Zowalla,Richard %A Pobiruchin,Monika %+ Department of Medical Informatics, Heilbronn University, Max-Planck-Str 39, Heilbronn, 74081, Germany, 49 71315046947, martin.wiesner@hs-heilbronn.de %K readability %K psoriasis %K psoriatic arthritis %K health literacy %K health education %D 2020 %7 11.3.2020 %9 Original Paper %J JMIR Dermatol %G English %X Background: Information-seeking Psoriasis or Psoriatic Arthritis patients are confronted with numerous educational materials when looking through the internet. Literature suggests that only 17.0%-21.4% of (Psoriasis, Psoriatic Arthritis) patients have a good level of knowledge about psoriasis treatment and self-management. A study from 1994 found that English Psoriasis/Psoriatic Arthritis brochures required a reading level between grades 8-12 to be understandable, which was confirmed in a follow-up study 20 years later. As readability of written health-related text material should not exceed the sixth-grade level, Psoriasis/Psoriatic Arthritis material seems to be ill-suited to its target audience. However, no data is available on the readability levels of Psoriasis/Psoriatic Arthritis brochures for German-speaking patients, and both the volume and their scope are unclear. Objective: This study aimed to analyze freely available educational materials for Psoriasis/Psoriatic Arthritis patients written in German, quantifying their difficulty by assessing both the readability and the vocabulary used in the collected brochures. Methods: Data collection was conducted manually via an internet search engine for Psoriasis/Psoriatic Arthritis–specific material, published as PDF documents. Next, raw text was extracted, and a computer-based readability and vocabulary analysis was performed on each brochure. For the readability analysis, we applied the Flesch Reading Ease (FRE) metric adapted for the German language, and the fourth Vienna formula (WSTF). To assess the laymen-friendliness of the vocabulary, the computation of an expert level was conducted using a specifically trained Support Vector Machine classifier. A two-sided, two-sample Wilcoxon test was applied to test whether the difficulty of brochures of pair-wise topic groups was different from each other. Results: In total, 68 brochures were included for readability assessment, of which 71% (48/68) were published by pharmaceutical companies, 22% (15/68) by nonprofit organizations, and 7% (5/68) by public institutions. The collection was separated into four topic groups: basic information on Psoriasis/Psoriatic Arthritis (G1/G2), lifestyle, and behavior with Psoriasis/Psoriatic Arthritis (G3/G4), medication and therapy guidance (G5), and other topics (G6). On average, readability levels were comparatively low, with FRE=31.58 and WSTF=11.84. However, two-thirds of the educational materials (69%; 47/68) achieved a vocabulary score ≤4 (ie, easy, very easy) and were, therefore, suitable for a lay audience. Statistically significant differences between brochure groups G1 and G3 for FRE (P=.0001), WSTF (P=.003), and vocabulary measure (L) (P=.01) exist, as do statistically significant differences for G2 and G4 in terms of FRE (P=.03), WSTF (P=.03) and L (P=.03). Conclusions: Online Psoriasis/Psoriatic Arthritis patient education materials in German require, on average, a college or university education level. As a result, patients face barriers to understanding the available material, even though the vocabulary used seems appropriate. For this reason, publishers of Psoriasis/Psoriatic Arthritis brochures should carefully revise their educational materials to provide easier and more comprehensible information for patients with lower health literacy levels. %R 10.2196/16095 %U http://derma.jmir.org/2020/1/e16095/ %U https://doi.org/10.2196/16095 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 3 %P e14095 %T 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 %A Chung,Kyungmi %A Cho,Hee Young %A Kim,Young Ran %A Jhung,Kyungun %A Koo,Hwa Seon %A Park,Jin Young %+ Department of Psychiatry, Yonsei University College of Medicine, Severance Hospital, Yonsei University Health System, 50-1 Yonsei-ro, Seodaemun-gu, Seoul, , Republic of Korea, 82 2 2228 0972, empathy@yuhs.ac %K perinatal care %K obstetrics %K mental health %K information seeking behavior %K help-seeking behavior %K self efficacy %K health literacy %K consultation %K decision making %K internet %D 2020 %7 4.3.2020 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 32130139 %R 10.2196/14095 %U https://www.jmir.org/2020/3/e14095 %U https://doi.org/10.2196/14095 %U http://www.ncbi.nlm.nih.gov/pubmed/32130139 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 2 %P e17194 %T A Virtual Multidisciplinary Care Program for Management of Advanced Chronic Kidney Disease: Matched Cohort Study %A Kaiser,Paulina %A Pipitone,Olivia %A Franklin,Anthony %A Jackson,Dixie R %A Moore,Elizabeth A %A Dubuque,Christopher R %A Peralta,Carmen A %A De Mory,Anthony C %+ Cricket Health, 251 Kearny St, Floor 7, San Francisco, CA, 94108, United States, 1 (888) 780 0253, carmen@crickethealth.com %K chronic kidney disease %K end-stage renal disease %K online social networking %K patient education %K renal dialysis %D 2020 %7 12.2.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: It is not well established whether a virtual multidisciplinary care program for persons with advanced chronic kidney disease (CKD) can improve their knowledge about their disease, increase their interest in home dialysis therapies, and result in more planned outpatient (versus inpatient) dialysis starts. Objective: We aimed to evaluate the feasibility and preliminary associations of program participation with disease knowledge, home dialysis modality preference, and outpatient dialysis initiation among persons with advanced CKD in a community-based nephrology practice. Methods: In a matched prospective cohort, we enrolled adults aged 18 to 85 years with at least two estimated glomerular filtration rates (eGFRs) of less than 30 mL/min/1.73 m2 into the Cricket Health program and compared them with controls receiving care at the same clinic, matched on age, gender, eGFR, and presence of heart failure and diabetes. The intervention included online education materials, a virtual multidisciplinary team (nurse, pharmacist, social worker, dietician), and patient mentors. Prespecified follow-up time was nine months with extended follow-up to allow adequate time to determine the dialysis start setting. CKD knowledge and dialysis modality choice were evaluated in a pre-post survey among intervention participants. Results: Thirty-seven participants were matched to 61 controls by age (mean 67.2, SD 10.4 versus mean 68.8, SD 9.5), prevalence of diabetes (54%, 20/37 versus 57%, 35/61), congestive heart failure (22%, 8/37 versus 25%, 15/61), and baseline eGFR (mean 19, SD 6 versus mean 21, SD 5 mL/min/1.73 m2), respectively. At nine-month follow-up, five patients in each group started dialysis (P=.62). Among program participants, 80% (4/5) started dialysis as an outpatient compared with 20% (1/5) of controls (OR 6.28, 95% CI 0.69-57.22). In extended follow-up (median 15.7, range 11.7 to 18.1 months), 19 of 98 patients started dialysis; 80% (8/10) of the intervention group patients started dialysis in the outpatient setting versus 22% (2/9) of control patients (hazard ratio 6.89, 95% CI 1.46-32.66). Compared to before participation, patients who completed the program had higher disease knowledge levels (mean 52%, SD 29% versus mean 94%, SD 14% of questions correct on knowledge-based survey, P<.001) and were more likely to choose a home modality as their first dialysis choice (36%, 7/22 versus 68%, 15/22, P=.047) after program completion. Conclusions: The Cricket Health program can improve patient knowledge about CKD and increase interest in home dialysis modalities, and may increase the proportion of dialysis starts in the outpatient setting. %M 32049061 %R 10.2196/17194 %U http://www.jmir.org/2020/2/e17194/ %U https://doi.org/10.2196/17194 %U http://www.ncbi.nlm.nih.gov/pubmed/32049061 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 1 %P e15071 %T An Online Pain Education Program for Working Adults: Pilot Randomized Controlled Trial %A Li,Yajie %A Tse,Mun Yee Mimi %+ School of Nursing, The Hong Kong Polytechnic University, Hung Hom, Kowloon, Hong Kong, 852 2766 6541, mimi.tse@polyu.edu.hk %K pain %K online education %K WeChat %K working adults %D 2020 %7 14.1.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Pain is a common public health concern, and the pain situation among the general population is serious in mainland China. Working adults commonly experience pain because of long sitting times, a lack of free time, and exercise. A lack of pain-related knowledge is also a significant factor. Educational and therapeutic programs delivered online were used more often in Western countries, and accessible programs in China are limited, especially for pain management. Therefore, we carried out an online pain education program for working adults to self-manage pain. The program was delivered through WeChat, a popular and secure social media with a large population base in China. Objective: This study aimed to (1) provide pain-related knowledge and self-relief strategies, (2) help participants reduce pain and improve pain-related emotional well-being, and (3) explore participants’ learning performance and the acceptability of the online pain education program. Methods: This was a randomized controlled trial. Chinese adults aged between 16 and 60 years with full-time employment, with pain in the past 6 months, and without any mental illness were recruited using snowball sampling through the internet and were randomly allocated to an experimental group and a control group in 1:1 ratio after the baseline assessment. The 4-week educational program that included basic knowledge of pain, pharmacological and nonpharmacological treatments, and related resources was provided only to the experimental group. Outcomes of pain, depression, anxiety, stress, and pain self-efficacy were measured at baseline (T0), posttreatment (T1), and 1-month follow-up (T2). Participants’ acceptability and satisfaction were explored after completing the educational program. Results: In total, 95 eligible participants joined in the program: 47 in the experimental group and 48 in the control group. Neck and shoulder, head, and back were most commonly reported pain sites with high pain scores. Pain intensity and interference of the experimental group were significantly reduced after the educational program. Depression, anxiety, and stress clinically improved and pain self-efficacy improved after the educational program. The difference in depression, anxiety, stress, and pain self-efficacy within a group or between groups was not statistically significant; however, clinical improvements were demonstrated. A significant correlation between dosage of the intervention and pain intensity and depression was demonstrated. After completing the educational program, more than half of the participants showed acceptance of and satisfaction with the program, and they were willing to recommend the program to others. Conclusions: Our findings highlight the significant potential of this online education program in the treatment of pain. Trial Registration: ClinicalTrials.gov NCT03952910; https://clinicaltrials.gov/ct2/show/NCT03952910 %M 31934865 %R 10.2196/15071 %U https://www.jmir.org/2020/1/e15071 %U https://doi.org/10.2196/15071 %U http://www.ncbi.nlm.nih.gov/pubmed/31934865 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 3 %N 1 %P e15093 %T Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study %A Saulsberry,Anjelica C %A Hodges,Jason R %A Cole,Audrey %A Porter,Jerlym S %A Hankins,Jane %+ Department of Hematology, St Jude Children's Research Hospital, 262 Danny Thomas Pl, Memphis, TN, , United States, 1 9015954153, jane.hankins@stjude.org %K sickle cell anemia %K eHealth %K transition to adult care %D 2020 %7 7.1.2020 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD. Objective: The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. Methods: This was a single-center, Institution Review Board–approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored. Results: Overall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (r=0.47) was found between the number of STEP modules completed and disease knowledge scores (P=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 STEP modules compared with those who completed <3 STEP modules (U=149.00; P=.007). Conclusions: Improvement in disease knowledge in adolescence is critical to ensure the youth’s ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care. %M 31909718 %R 10.2196/15093 %U https://pediatrics.jmir.org/2020/1/e15093 %U https://doi.org/10.2196/15093 %U http://www.ncbi.nlm.nih.gov/pubmed/31909718 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 2 %N 2 %P e16335 %T Voices in Evidence-Based Newborn Care: A How-to-Guide on Developing a Parent-Facing Podcast %A Parga-Belinkie,Joanna %A Merchant,Raina M %+ Children's Hospital of Philadelphia, 3401 Civic Center Blvd, Division of Neonatology, 2NW35, Philadelphia, PA, 19104, United States, 1 5164268898, jo.parga@gmail.com %K neonatology %K social media %K medical education %K patient education %D 2019 %7 20.12.2019 %9 Tutorial %J JMIR Pediatr Parent %G English %X Podcasting is becoming a more popular form of media. Its use in medical education is being researched—but what about its use in public education? In this tutorial, the authors offer a how-to-guide on starting a public or patient-facing podcast. The authors hope to inspire more physicians to utilize this type of media to share evidence-based information. More research is needed looking into how podcasting can be used to help with patient education. %M 31859674 %R 10.2196/16335 %U http://pediatrics.jmir.org/2019/2/e16335/ %U https://doi.org/10.2196/16335 %U http://www.ncbi.nlm.nih.gov/pubmed/31859674 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 11 %N 4 %P e16511 %T The “Preparation for Shared Decision-Making” Tool for Women With Advanced Breast Cancer: Qualitative Validation Study %A Masi,Domitilla %A Gomez-Rexrode,Amalia Elvira %A Bardin,Rina %A Seidman,Joshua %+ Avalere Health, Center for Healthcare Transformation, 1201 New York Avenue, NW, Washington, DC, 20005, United States, 1 2024596315, rbardin@avalere.com %K shared decision making %K clinical decision making %K patient preferences %K cancer %K breast cancer %K human-centered design %K patient care planning %D 2019 %7 20.12.2019 %9 Original Paper %J J Participat Med %G English %X Background: The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process. Objective: Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population. Methods: We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool. Results: Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool. Conclusions: This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool’s implementation in the clinical workflow and its impact on patient outcomes. %R 10.2196/16511 %U http://jopm.jmir.org/2019/4/e16511/ %U https://doi.org/10.2196/16511 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 12 %P e15132 %T Searching the Internet for Infertility Information: A Survey of Patient Needs and Preferences %A Brochu,Felicia %A Robins,Stephanie %A Miner,Skye A %A Grunberg,Paul H %A Chan,Peter %A Lo,Kirk %A Holzer,Hananel E G %A Mahutte,Neal %A Ouhilal,Sophia %A Tulandi,Togas %A Zelkowitz,Phyllis %+ Department of Psychiatry, Jewish General Hospital, 4333 Côte-Sainte-Catherine Road, Montreal, QC, H3T 1E4, Canada, 1 5143408222 ext 25258, phyllis.zelkowitz@mcgill.ca %K infertility %K internet %K consumer health information %K patient satisfaction %K stress, psychological %D 2019 %7 12.12.2019 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 31829963 %R 10.2196/15132 %U https://www.jmir.org/2019/12/e15132 %U https://doi.org/10.2196/15132 %U http://www.ncbi.nlm.nih.gov/pubmed/31829963 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 12 %P e14462 %T Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial %A Krishnamurti,Lakshmanan %A Ross,Diana %A Sinha,Cynthia %A Leong,Traci %A Bakshi,Namita %A Mittal,Nonita %A Veludhandi,Divya %A Pham,Anh-Phuong %A Taneja,Alankrita %A Gupta,Kamesh %A Nwanze,Julum %A Matthews,Andrea Marie %A Joshi,Saumya %A Vazquez Olivieri,Veronica %A Arjunan,Santhi %A Okonkwo,Ifechi %A Lukombo,Ines %A Lane,Peter %A Bakshi,Nitya %A Loewenstein,George %+ Aflac Cancer and Blood Disorders Center, Emory University School of Medicine, Children’s Healthcare of Atlanta, 1405 Clifton Road NE, Atlanta, GA, 30322, United States, 1 404 727 0710, lkrishn@emory.edu %K decision aids %K decision support %K sickle cell anemia %K sickle cell disease %K sickle cell disorders %D 2019 %7 4.12.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Hydroxyurea, chronic blood transfusions, and bone marrow transplantation are efficacious, disease-modifying therapies for sickle cell disease but involve complex risk-benefit trade-offs and decisional dilemma compounded by the lack of comparative studies. A patient decision aid can inform patients about their treatment options, the associated risks and benefits, help them clarify their values, and allow them to participate in medical decision making. Objective: The objective of this study was to develop a literacy-sensitive Web-based patient decision aid based on the Ottawa decision support framework, and through a randomized clinical trial estimate the effectiveness of the patient decision aid in improving patient knowledge and their involvement in decision making. Methods: We conducted population decisional needs assessments in a nationwide sample of patients, caregivers, community advocates, policy makers, and health care providers using qualitative interviews to identify decisional conflict, knowledge and expectations, values, support and resources, decision types, timing, stages and learning, and personal clinical characteristics. Interview transcripts were coded using QSR NVivo 10. Alpha testing of the patient decision aid prototype was done to establish usability and the accuracy of the information it conveyed, and then was followed by iterative cycles of beta testing. We conducted a randomized clinical trial of adults and of caregivers of pediatric patients to evaluate the efficacy of the patient decision aid. Results: In a decisional needs assessment, 223 stakeholders described their preferences, helping to guide the development of the patient decision aid, which then underwent alpha testing by 30 patients and 38 health care providers and iterative cycles of beta testing by 87 stakeholders. In a randomized clinical trial, 120 participants were assigned to either the patient decision aid or standard care (SC) arm. Qualitative interviews revealed high levels of usability, acceptability, and utility of the patient decision aid in education, values clarification, and preparation for decision making. On the acceptability survey, 72% (86/120) of participants rated the patient decision aid as good or excellent. Participants on the patient decision aid arm compared to the SC arm demonstrated a statistically significant improvement in decisional self-efficacy (P=.05) and a reduction in the informed sub-score of decisional conflict (P=.003) at 3 months, with an improvement in preparation for decision making (P<.001) at 6 months. However, there was no improvement in terms of the change in knowledge, the total or other domain scores of decisional conflicts, or decisional self-efficacies at 6 months. The large amount of missing data from survey completion limited our ability to draw conclusions about the effectiveness of the patient decision aid. The patient decision aid met 61 of 62 benchmarks of the international patient decision aid collaboration standards for content, development process, and efficacy. Conclusions: We have developed a patient decision aid for sickle cell disease with extensive input from stakeholders and in a randomized clinical trial demonstrated its acceptability and utility in education and decision making. We were unable to demonstrate its effectiveness in improving patient knowledge and involvement in decision making. Trial Registration: ClinicalTrials.gov NCT03224429; https://clinicaltrials.gov/ct2/show/NCT03224429 and ClinicalTrials.gov NCT02326597; https://clinicaltrials.gov/ct2/show/NCT02326597 %M 31799940 %R 10.2196/14462 %U https://www.jmir.org/2019/12/e14462 %U https://doi.org/10.2196/14462 %U http://www.ncbi.nlm.nih.gov/pubmed/31799940 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 2 %N 2 %P e14518 %T A Pragmatic Internet Intervention to Promote Positive Parenting and School Readiness in Early Childhood: Initial Evidence of Program Use and Satisfaction %A McGoron,Lucy %A Ratner,Hilary Horn %A Knoff,Kathryn AG %A Hvizdos,Erica %A Ondersma,Steven J %+ Wayne State University, The Merrill Palmer Skillman Institute for Child and Family Development, 71 E Ferry St, Detroit, MI, 48202, United States, 1 3136642553, Lucy.K.McGoron@wayne.edu %K child rearing %K child development %D 2019 %7 29.11.2019 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Internet-based parenting programs have the potential to connect families to research-informed materials to promote positive child development. However, such programs can only succeed to the extent that the intended population engages with them. Objective: This study aimed to evaluate engagement in the 5-a-Day Parenting program, a technology-based program designed with low-income families in mind, to promote daily use of 5 specific parenting activities conducive to children’s school readiness. Following earlier pilot data, the program was enhanced with an initial motivational e-intervention and tailored text messages designed to promote engagement. Methods: Parents were recruited from local childcare centers and through a participant registry. We examined rates of receipt of program text messages and use of video-based content on the program website, 3 factors that may affect website use, and satisfaction with key program elements. Results: A total of 360 parents of young children learned about the study and had the opportunity to use the 5-a-Day Parenting website. Of these, 94 parents participated in the study, and 33% (31/94) accessed the video-based content on the website at least once. No association was found between website use and program recruitment approach, program-affiliation message, sociocontextual risk, and baseline use of the five parenting activities. Satisfaction with text messages and video-based content was high. Conclusions: For some parents, technology-based programs appear useful; however, engagement could still be enhanced. Additional research should seek innovative strategies for promoting engagement in Web-based parenting programs. %M 31782739 %R 10.2196/14518 %U http://pediatrics.jmir.org/2019/2/e14518/ %U https://doi.org/10.2196/14518 %U http://www.ncbi.nlm.nih.gov/pubmed/31782739 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e15787 %T A Chatbot Versus Physicians to Provide Information for Patients With Breast Cancer: Blind, Randomized Controlled Noninferiority Trial %A Bibault,Jean-Emmanuel %A Chaix,Benjamin %A Guillemassé,Arthur %A Cousin,Sophie %A Escande,Alexandre %A Perrin,Morgane %A Pienkowski,Arthur %A Delamon,Guillaume %A Nectoux,Pierre %A Brouard,Benoît %+ ENT Department, Hôpital Gui de Chauliac, Université Montpellier 1, 60 Avenue Augustin Fliche, Montpellier, 34264, France, 33 0467336872, b-chaix@chu-montpellier.fr %K chatbot %K clinical trial %K cancer %D 2019 %7 27.11.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: The data regarding the use of conversational agents in oncology are scarce. Objective: The aim of this study was to verify whether an artificial conversational agent was able to provide answers to patients with breast cancer with a level of satisfaction similar to the answers given by a group of physicians. Methods: This study is a blind, noninferiority randomized controlled trial that compared the information given by the chatbot, Vik, with that given by a multidisciplinary group of physicians to patients with breast cancer. Patients were women with breast cancer in treatment or in remission. The European Organisation for Research and Treatment of Cancer Quality of Life Group information questionnaire (EORTC QLQ-INFO25) was adapted and used to compare the quality of the information provided to patients by the physician or the chatbot. The primary outcome was to show that the answers given by the Vik chatbot to common questions asked by patients with breast cancer about their therapy management are at least as satisfying as answers given by a multidisciplinary medical committee by comparing the success rate in each group (defined by a score above 3). The secondary objective was to compare the average scores obtained by the chatbot and physicians for each INFO25 item. Results: A total of 142 patients were included and randomized into two groups of 71. They were all female with a mean age of 42 years (SD 19). The success rates (as defined by a score >3) was 69% (49/71) in the chatbot group versus 64% (46/71) in the physicians group. The binomial test showed the noninferiority (P<.001) of the chatbot’s answers. Conclusions: This is the first study that assessed an artificial conversational agent used to inform patients with cancer. The EORTC INFO25 scores from the chatbot were found to be noninferior to the scores of the physicians. Artificial conversational agents may save patients with minor health concerns from a visit to the doctor. This could allow clinicians to spend more time to treat patients who need a consultation the most. Trial Registration: Clinicaltrials.gov NCT03556813, https://tinyurl.com/rgtlehq %M 31774408 %R 10.2196/15787 %U http://www.jmir.org/2019/11/e15787/ %U https://doi.org/10.2196/15787 %U http://www.ncbi.nlm.nih.gov/pubmed/31774408 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e17045 %T Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto %A deBronkart,Dave %A Eysenbach,Gunther %+ JMIR Publications, 130 Queens Quay E, Ste. 1100, Toronto, ON, Canada, 1 416 583 2040, editor@jmir.org %K data %K participatory medicine %K ehealth %D 2019 %7 22.11.2019 %9 Discussion Paper %J J Med Internet Res %G English %X Ten years ago, in 2009, “e-Patient Dave” deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research’s (JMIR’s) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, openness, collaboration, apomediation, and social networking to improve health care for the 21st century—with patient participation being a major component. Many see this as a defining event within the participatory medicine movement, perhaps the beginning of a social movement, similar to the women’s rights movement, with the title of Dave’s keynote “Gimme my damn data” becoming a rallying cry and hashtag for patients demanding more access to their electronic health records. On the occasion of the 20th anniversary of JMIR (and 10 years after the keynote), we are celebrating the impact of the keynote for the participatory medicine movement and #gimmemydamndata (also #GMDD) by publishing the transcript of these initial conversations as a manifesto of patients’ rights to access their data and their right to save their lives. %M 31755873 %R 10.2196/17045 %U http://www.jmir.org/2019/11/e17045/ %U https://doi.org/10.2196/17045 %U http://www.ncbi.nlm.nih.gov/pubmed/31755873 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 3 %N 4 %P e13786 %T A Patient Decision Aid App for Patients With Chronic Kidney Disease: Questionnaire Study %A Therkildsen,Signe Bülow %A Hansen,Linda Houlind %A Jensen,Laura Emilie Dinesen %A Finderup,Jeanette %+ Department of Clinical Medicine, Aarhus University, Palle Juul-Jensens Boulevard 99, Aarhus, 8200, Denmark, 45 78452525, jeajee@rm.dk %K mobile phone %K app %K patient decision aid %K dialysis %K decisional conflict %K usability %D 2019 %7 21.11.2019 %9 Original Paper %J JMIR Form Res %G English %X Background: The Dialysis Guide (DG) is a patient decision aid (PDA) available as an app and developed for mobile phones for patients with chronic kidney disease facing the decision about dialysis modality. Objective: The aim of this study was to uncover the applicability of the DG as a PDA. Methods: The respondents completed a questionnaire before and after using the DG. The respondents' decisional conflicts were examined using the Decisional Conflict Scale, and the usability of the app was examined using the System Usability Scale (SUS). The change in decisional conflict was determined with a paired t test. Results: A total of 22 respondents participated and their mean age was 65.05 years; 20 out of 22 (90%) had attended a patient school for kidney disease, and 13 out of 22 (59%) had participated in a conversation about dialysis choice with a health professional. After using the DG, the respondents' decisional conflicts were reduced, though the reduction was not statistically significant (P=.49). The mean SUS score was 66.82 (SD 14.54), corresponding to low usability. Conclusions: The DG did not significantly reduce decisional conflict, though the results indicate that it helped the respondents decide on dialysis modality. Attending a patient school and having a conversation about dialysis modality choice with a health professional is assumed to have had an impact on the decisional conflict before using the DG. The usability of the DG was not found to be sufficient, which might be caused by the respondents’ average age. Thus, the applicability of the DG cannot be definitively determined. %M 31750836 %R 10.2196/13786 %U http://formative.jmir.org/2019/4/e13786/ %U https://doi.org/10.2196/13786 %U http://www.ncbi.nlm.nih.gov/pubmed/31750836 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e15332 %T A Typology of Patients Based on Decision-Making Styles: Cross-Sectional Survey Study %A FitzPatrick,Mary Anne %A Hess,Alexandra Claudia %A Sudbury-Riley,Lynn %A Schulz,Peter Johannes %+ School of Management and Marketing, Waikato Management School, University of Waikato, Hillcrest Rd, Hillcrest,, Hamilton, 3240, New Zealand, 64 +64 7 838 4477, maryfitz@waikato.ac.nz %K internet %K online health information %K patient decision making %K patient-practitioner interaction %K patient segments %K patient typology %K baby boomers %K patient education %D 2019 %7 20.11.2019 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 31746770 %R 10.2196/15332 %U http://www.jmir.org/2019/11/e15332/ %U https://doi.org/10.2196/15332 %U http://www.ncbi.nlm.nih.gov/pubmed/31746770 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e14554 %T Associations Between Characteristics of Web-Based Diabetes News and Readers’ Sentiments: Observational Study in the Netherlands %A Vehof,Hans %A Heerdink,Eibert %A Sanders,José %A Das,Enny %+ Research Group Process Innovations in Pharmaceutical Care, HU University of Applied Sciences, Heidelberglaan 7, Utrecht, 3584 CS, Netherlands, 31 625098999, hans.vehof@hu.nl %K medical journalism %K diabetes mellitus %K information seeking behaviors %K news %K diffusion of innovation %D 2019 %7 13.11.2019 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 31719025 %R 10.2196/14554 %U https://www.jmir.org/2019/11/e14554 %U https://doi.org/10.2196/14554 %U http://www.ncbi.nlm.nih.gov/pubmed/31719025 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 10 %P e16690 %T The Importance of Health Information on the Internet: How It Saved My Life and How it Can Save Yours %A Kushniruk,Andre %+ School of Health Information Science, University of Victoria, Human and Social Development Building room A202, 3800 Finnerty Road (Ring Road), Victoria, BC, V8P5C2, Canada, 1 250 472 5132, andrek@uvic.ca %K patient journey %K human factors %K consumer health informatics %K eHealth %K digital health %K participatory medicine %K shared decision-making %K cancer information %K tongue cancer %D 2019 %7 27.10.2019 %9 Viewpoint %J J Med Internet Res %G English %X The internet holds the potential promise of improved patient outcomes, especially when one is faced with a critical or life-threatening disease or condition. Appropriate and timely access to health information can support informed negotiation of optimal treatments, optimal management, and expedited recovery, and to an improved outcome for a patient. However, there are many human and technical barriers that may prevent the application of the best possible information for both patient and provider alike, making the patient journey complex and potentially dangerous. In this viewpoint paper, the author (who is also a JMIR editor) reflects on a personal patient journey, where use of the internet facilitated a means of reaching a good patient outcome in the face of a variety of informational and organizational limitations and gaps. This journey illustrates the importance of human-related factors affecting access to health information. The application of a range of internet information resources at critical points can result in a positive patient outcome, as this case illustrates. This paper reflects on how the experience highlights several information needs and concerns. It also highlights the need for improved access to appropriate health information along the patient journey that can support patient and provider joint decision-making. This access to information can make the difference between positive clinical outcomes and death, illustrating how health information on the internet can be both critical and life saving. %M 31661084 %R 10.2196/16690 %U http://www.jmir.org/2019/10/e16690/ %U https://doi.org/10.2196/16690 %U http://www.ncbi.nlm.nih.gov/pubmed/31661084 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 8 %N 10 %P e13321 %T An Analytical Mobile App for Shared Decision Making About Prenatal Screening: Protocol for a Mixed Methods Study %A Abbasgholizadeh Rahimi,Samira %A Archambault,Patrick M %A Ravitsky,Vardit %A Lemoine,Marie-Eve %A Langlois,Sylvie %A Forest,Jean-Claude %A Giguère,Anik M C %A Rousseau,François %A Dolan,James G %A Légaré,France %+ Centre de recherche sur les soins et les services de première ligne de l’Université Laval, Université Laval, 2525, Chemin de la Canardière, Québec, QC, Canada, 1 418 525 4437, France.Legare@mfa.ulaval.ca %K shared decision making %K multiple criteria decision analysis %K analytic hierarchy process %K decision aid %K prenatal screening %K mobile app %D 2019 %7 8.10.2019 %9 Protocol %J JMIR Res Protoc %G English %X Background: Decisions about prenatal screening to assess the risk of genetic conditions such as Down syndrome are complex and should be well informed. Moreover, the number of available tests is increasing. Shared decision making (SDM) about testing could be facilitated by decision aids powered by mobile technology. Objective: In this mixed methods study, we aim to (1) assess women’s needs and preferences regarding using an app for considering prenatal screening, (2) develop a decision model using the analytical hierarchy process, and (3) develop an analytical app and assess its usability and usefulness. Methods: In phase 1, we will assess the needs of 90 pregnant women and their partners (if available). We will identify eligible participants in 3 clinical sites (a midwife-led birthing center, a family practice clinic, and an obstetrician-led hospital-based clinic) in Quebec City and Montreal, Canada. Using semistructured interviews, we will assess participants’ attitudes toward mobile apps for decision making about health, their current use of apps for health purposes, and their expectations of an app for prenatal testing decisions. Self-administered questionnaires will collect sociodemographic information, intentions to use an app for prenatal testing, and perceived importance of decision criteria. Qualitative data will be transcribed verbatim and analyzed thematically. Quantitative data will be analyzed using descriptive statistics and the analytic hierarchy process (AHP) method. In phase 2, we will develop a decision model using the AHP whereby users can assign relative importance to criteria when deciding between options. We will validate the model with potential users and a multidisciplinary team of patients, family physicians, primary care researchers, decision sciences experts, engineers, and experts in SDM, genetics, and bioethics. In phase 3, we will develop a prototype of the app using the results of the first 2 phases, pilot test its usefulness and usability among a sample of 15 pregnant women and their partners (if available), and improve it through 3 iterations. Data will be collected with a self-administered questionnaire. Results will be analyzed using descriptive statistics. Results: Recruitment for phase 1 will begin in 2019. We expect results to be available in 2021. Conclusions: This study will result in a validated analytical app that will provide pregnant women and their partners with up-to-date information about prenatal screening options and their risks and benefits. It will help them clarify their values and enable them to weigh the options to make informed choices consistent with their preferences and values before meeting face-to-face with their health care professional. The app will be easy to update with the latest information and will provide women with a user-friendly experience using their smartphones or tablets. This study and the resulting app will contribute to high-quality SDM between pregnant women and their health care team. International Registered Report Identifier (IRRID): DERR1-10.2196/13321 %M 31596249 %R 10.2196/13321 %U https://www.researchprotocols.org/2019/10/e13321 %U https://doi.org/10.2196/13321 %U http://www.ncbi.nlm.nih.gov/pubmed/31596249 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 10 %P e14407 %T Tailored Web-Based Information for Younger and Older Patients with Cancer: Randomized Controlled Trial of a Preparatory Educational Intervention on Patient Outcomes %A Nguyen,Minh Hao %A Smets,Ellen M A %A Bol,Nadine %A Loos,Eugène F %A van Laarhoven,Hanneke W M %A Geijsen,Debby %A van Berge Henegouwen,Mark I %A Tytgat,Kristien M A J %A van Weert,Julia C M %+ Amsterdam School of Communication Research, University of Amsterdam, Nieuwe Achtergracht 166, 1018 WV, Amsterdam, Netherlands, 31 20 525 368, mh.nguyen@ikmz.uzh.ch %K Web-based tailoring %K internet %K audiovisual media %K patient education %K cancer %K aging %K memory %K anxiety %K patient reported outcomes %K patient participation %K consultation %K health communication %K randomized controlled trial %D 2019 %7 1.10.2019 %9 Original Paper %J J Med Internet Res %G English %X 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 %M 31573911 %R 10.2196/14407 %U https://www.jmir.org/2019/10/e14407 %U https://doi.org/10.2196/14407 %U http://www.ncbi.nlm.nih.gov/pubmed/31573911 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 8 %N 9 %P e13656 %T The Effectiveness of Educational Mobile Messages for Assisting in the Prevention of Early Childhood Caries: Protocol for a Randomized Controlled Trial %A Aguirre,Patricia Estefania Ayala %A Lotto,Matheus %A Strieder,Anna Paola %A Cruvinel,Agnes Fátima Pereira %A Cruvinel,Thiago %+ Department of Pediatric Dentistry, Orthodontics and Public Health, Bauru School of Dentistry, University of São Paulo, Alameda Dr Octávio Pinheiro Brisolla, 9-75, Vila Universitária, Bauru,, Brazil, 55 1432358318, thiagocruvinel@fob.usp.br %K eHealth %K dental caries %K randomized controlled trial %D 2019 %7 03.09.2019 %9 Protocol %J JMIR Res Protoc %G English %X Background: In 2017, approximately 3.7 billion downloads of health apps were made on mobile phones and tablets. In this sense, a massive number of people could benefit by electronic mobile–based health interventions, making information available even with the lack of material and human resources. Hence, the use of electronic apps for dental education might be extremely useful for the prevention of early childhood caries (ECC). Objective: This study aims to evaluate the effectiveness of messages sent via mobile phones as an adjuvant method for the prevention of ECC. Methods: A single-blinded, randomized, and parallel-group clinical trial will be conducted with dyads of parents or caregivers and children aged between 36 and 60 months, recruited from kindergartens and schools of Bauru, São Paulo. The determination of sample size resulted in a total of 104 dyads of parents and children, considering a power of 80%, a significance level of 5%, and an attrition of 30%. This sample will be randomly assigned to test and control groups, being divided in 52 dyads per group according to the health literacy levels of parents and the age, gender, and oral health status of children. Every 2 weeks, only participants in the test group will receive messages via WhatsApp containing preventive and education-related ECC information. The dyads will visit the dentist every 3 months during a year for the assessment of primary outcomes (sugar consumption and the International Caries Detection and Assessment System, visible plaque, and community periodontal indices) and to receive dental care measures. Secondary outcomes (electronic health literacy and general perceived self-efficacy) will be determined only at baseline and after 12-month follow-up. The quality of randomization will be evaluated throughout the study, comparing the test and control groups systematically by Student t tests for continuous variables and chi-square tests for categorical variables. Listwise deletion method will be applied in cases of dropouts, if the missing values satisfy the criteria of missing completely at random; otherwise, multiple imputation data strategy will be conducted. The Kolmogorov-Smirnov and Levene tests will be used to determine the normality and homogeneity of data, respectively, which will indicate further statistical analyses for elucidating significant differences between groups (P<.05). A Student t test or Mann-Whitney U test will be employed for parametric or nonparametric analyses, respectively. Results: The project was funded in 2018, and enrollment was completed in August 2019. Allocation is currently under way and the first results are expected to be submitted for publication in 2020. Conclusions: The results will contribute to understanding the importance of educational mobile messages toward the adoption of healthy behaviors for the prevention of ECC in a given population. Trial Registration: Brazilian Registry of Clinical Trials Universal Trial Number U1111-1216-1393; http://www.ensaiosclinicos.gov.br/rg/RBR-2b6r7q/ International Registered Report Identifier (IRRID): PRR1-10.2196/13656 %M 31482856 %R 10.2196/13656 %U https://www.researchprotocols.org/2019/9/e13656/ %U https://doi.org/10.2196/13656 %U http://www.ncbi.nlm.nih.gov/pubmed/31482856 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 8 %P e12483 %T 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 %A Meeker,Daniella %A Goldberg,Jordan %A Kim,Katherine K %A Peneva,Desi %A Campos,Hugo De Oliveira %A Maclean,Ross %A Selby,Van %A Doctor,Jason N %+ Schaeffer Center for Health Policy and Economics, University of Southern California, 635 Downey Way, Los Angeles, CA, 90089, United States, 1 213 821 8142, jdoctor@usc.edu %K heart failure %K behavioral economics %K motivational interviewing %D 2019 %7 06.08.2019 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 31389339 %R 10.2196/12483 %U http://www.jmir.org/2019/8/e12483/ %U https://doi.org/10.2196/12483 %U http://www.ncbi.nlm.nih.gov/pubmed/31389339 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 11 %N 3 %P e13800 %T Personalizing Value in Cancer Care: The Case for Incorporating Patient Preferences Into Routine Clinical Decision Making %A Seidman,Joshua %A Masi,Domitilla %A Gomez-Rexrode,Amalia Elvira %+ Avalere Health, Center for Healthcare Transformation, 1350 Connecticut Ave, NW, Suite 900, Washington, DC, 20036, United States, 1 2024462215, dmasi@avalere.com %K shared decision making %K patient preference %K health care %K neoplasms %D 2019 %7 10.07.2019 %9 Viewpoint %J J Participat Med %G English %X Despite growing research demonstrating the potential for shared decision making (SDM) to improve health outcomes, patient preferences—including financial trade-offs—are still not routinely incorporated into health care decision making. As the US health care delivery system transitions to rewarding value-based care, the question of “value to whom?” assumes greater importance. To achieve the goals of value-based care, the patient voice must be incorporated into clinical decision making by embedding SDM as a routine part of clinical practice. Identified as a priority by the Centers for Medicare & Medicaid Services (CMS), SDM-related measures and initiatives have already been integrated into CMS’ Center for Medicare and Medicaid Innovation (Innovation Center) demonstration projects (eg, the Oncology Care Model and Transforming Clinical Practice Initiative) and value-based payment programs (eg, the Merit-based Incentive Payment System, Medicare Shared Savings Program) to incentivize more proactive SDM engagement between patients and their providers. Furthermore, CMS has also integrated formal shared decision-making encounters into coverage and reimbursement policies (eg, for implantable cardioverter defibrillators), demonstrating a growing interest in SDM and its potential for eliciting and promoting the integration of patient preferences into the clinical decision-making process. In addition to increasing policy efforts to promote SDM, we need more research investments aimed at understanding how to optimize the science and practice of meaningful SDM. The current landscape and proposed road map for next steps in research, outlined in this review article, will help ensure the transition of pilots and research projects regarding the implementation of SDM into sustainable solutions. %R 10.2196/13800 %U http://jopm.jmir.org/2019/3/e13800/ %U https://doi.org/10.2196/13800 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 6 %P e12709 %T Promotion of Vape Tricks on YouTube: Content Analysis %A Kong,Grace %A LaVallee,Heather %A Rams,Alissa %A Ramamurthi,Divya %A Krishnan-Sarin,Suchitra %+ Yale School of Medicine, 34 Park St, New Haven, CT, 06519, United States, 1 2039747601, grace.kong@yale.edu %K e-cigarettes %K social media %K marketing %D 2019 %7 18.06.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: The ability to perform vape tricks (ie, blowing large vapor clouds or shapes like rings) using e-cigarettes appeals to youth. Vape tricks are promoted on social media, but the promotion of vape tricks on social media is not well understood. Objective: The aim of this study was to examine how vape tricks were promoted on YouTube to youth. Methods: Videos on vape tricks that could be accessed by underage youth were identified. The videos were coded for number of views, likes, dislikes, and content (ie, description of vape tricks, e-cigarette devices used for this purpose, video sponsors [private or industry], brand marketing, and contextual characteristics [eg, model characteristics, music, and profanity]). Results: An analysis of 59 sample videos on vape tricks identified 25 distinct vape tricks. These videos had more likes than dislikes (11 to 1 ratio) and a 32,017 median view count. 48% (28/59) of the videos were posted by industry accounts (27% [16/59] provaping organizations, 15% [9/59] online shops, and 3% [2/59] vape shops) and 53% by private accounts (55% [17/31] private users, 26% [8/31] vape enthusiasts, and 19% [6/31] YouTube influencers); 53% (31/59) of the videos promoted a brand of e-cigarette devices, e-liquids, or online/vape shops, and 99% of the devices used for vape tricks were advanced generation devices. The models in the videos were 80.2% (160/198) male, 51.5% white (102/198), and 61.6% (122/198) aged 18 to 24 years; 85% (50/59) of the videos had electronic dance music and hip hop, and 32% (19/59) had profanity. Conclusions: Vape trick videos on YouTube, about half of which were industry sponsored, were accessible to youth. Restrictions of e-cigarette marketing on social media, such as YouTube, are needed. %M 31215510 %R 10.2196/12709 %U http://www.jmir.org/2019/6/e12709/ %U https://doi.org/10.2196/12709 %U http://www.ncbi.nlm.nih.gov/pubmed/31215510 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 5 %N 1 %P e12593 %T Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review %A Speller,Brittany %A Micic,Selena %A Daly,Corinne %A Pi,Lebei %A Little,Tari %A Baxter,Nancy N %+ Department of Surgery, St. Michael’s Hospital, 16-040 Cardinal Carter Wing, 30 Bond Street, Toronto, ON, M5B 1W8, Canada, 1 416 864 5168, baxtern@smh.ca %K decision aids %K health education materials %K fertility %K cancer %K young women %K decision-making %K patient education %D 2019 %7 6.6.2019 %9 Original Paper %J JMIR Cancer %G English %X Background: Cancer treatments have the potential to cause infertility among women of reproductive age. Many cancer patients do not receive sufficient oncofertility information or referrals to reproductive specialists prior to starting cancer treatment. While health care providers cite lack of awareness on the available oncofertility resources, the majority of cancer patients use the internet as a resource to find additional information to supplement discussions with their providers. Objective: Our aim was to identify and characterize Web-based oncofertility decision aids and health education materials accessible for women of reproductive age with a diagnosis of any cancer. Methods: We searched five databases and the gray literature for the years 1994-2018. The developer and content information for identified resources was extracted. Each resource underwent a quality assessment. Results: We identified 31 open access resources including 4 decision aids and 27 health educational materials. The most common fertility preservation options listed in the resources included embryo (31/31, 100%), egg (31, 100%), and ovarian tissue freezing (30, 97%). Notably, approximately one-third (11, 35%) contained references and 5 (16%) had a reading level of grade 8 or below. Resources were of varying quality; two decision aids from Australia and the Netherlands, two booklets from Australia and the United Kingdom, and three websites from Canada and the United States rated as the highest quality. Conclusions: This comprehensive review characterizes numerous resources available to support patients and providers with oncofertility information, counseling, and decision making. More focus is required to improve the awareness and the access of existing resources among patients and providers. Providers can address patient information needs by leveraging or adapting existing resources to support clinical discussions and their specific patient population. %M 31199289 %R 10.2196/12593 %U http://cancer.jmir.org/2019/1/e12593/ %U https://doi.org/10.2196/12593 %U http://www.ncbi.nlm.nih.gov/pubmed/31199289 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 7 %N 6 %P e11677 %T A Feasibility Trial of Power Up: Smartphone App to Support Patient Activation and Shared Decision Making for Mental Health in Young People %A Edbrooke-Childs,Julian %A Edridge,Chloe %A Averill,Phoebe %A Delane,Louise %A Hollis,Chris %A Craven,Michael P %A Martin,Kate %A Feltham,Amy %A Jeremy,Grace %A Deighton,Jessica %A Wolpert,Miranda %+ Evidence Based Practice Unit, University College London and the Anna Freud National Centre for Children and Families, Clinical, Educational and Health Psychology, Gower Street, London, WC1E 6BT, United Kingdom, 44 (0) 20 7794 2313, julian.edbrooke-childs@annafreud.org %K telemedicine %K patient participation %K mental health %K adolescent %D 2019 %7 04.06.2019 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Digital tools have the potential to support patient activation and shared decision making in the face of increasing levels of mental health problems in young people. There is a need for feasibility trials of digital interventions to determine the usage and acceptability of interventions. In addition, there is a need to determine the ability to recruit and retain research participants to plan rigorous effectiveness trials and, therefore, develop evidence-based recommendations for practice. Objective: This study aimed to determine the feasibility of undertaking a cluster randomized controlled trial to test the effectiveness of a smartphone app, Power Up, co-designed with young people to support patient activation and shared decision making for mental health. Methods: Overall, 270 young people were screened for participation and 52.5% (142/270) were recruited and completed baseline measures across 8 specialist child mental health services (n=62, mean age 14.66 (SD 1.99) year; 52% [32/62] female) and 2 mainstream secondary schools (n=80; mean age 16.88 [SD 0.68] years; 46% [37/80] female). Young people received Power Up in addition to management as usual or received management as usual only. Posttrial interviews were conducted with 11 young people from the intervention arms (specialist services n=6; schools n=5). Results: Usage data showed that there were an estimated 50 (out of 64) users of Power Up in the intervention arms. Findings from the interviews indicated that young people found Power Up to be acceptable. Young people reported (1) their motivation for use of Power Up, (2) the impact of use, and (3) barriers to use. Out of the 142 recruited participants, 45.0% (64/142) completed follow-up measures, and the approaches to increase retention agreed by the steering group are discussed. Conclusions: The findings of this study indicate that the app is acceptable, and it is feasible to examine the effectiveness of Power Up in a prospective cluster randomized controlled trial. Trial Registration: ClinicalTrials.gov NCT02552797; https://clinicaltrials.gov/ct2/show/NCT02552797 (Archived by WebCite at http://www.webcitation.org/6td6MINP0) %M 31165709 %R 10.2196/11677 %U https://mhealth.jmir.org/2019/6/e11677/ %U https://doi.org/10.2196/11677 %U http://www.ncbi.nlm.nih.gov/pubmed/31165709 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 3 %N 2 %P e9995 %T Utilization of an Animated Electronic Health Video to Increase Knowledge of Post- and Pre-Exposure Prophylaxis for HIV Among African American Women: Nationwide Cross-Sectional Survey %A Bond,Keosha T %A Ramos,S Raquel %+ Department of Public Health, New York Medical College, 40 Sunshine Cottage Road, Valhalla, NY, 10595, United States, 1 594 2830, kbond@nymc.edu %K eHealth interventions %K heterosexual %K African American women %K HIV risk behaviors, HIV prevention %K entertainment-education %K postexposure prophylaxis %K pre-exposure prophylaxis %K internet %K videos %D 2019 %7 29.05.2019 %9 Original Paper %J JMIR Form Res %G English %X Background: Despite renewed focus on biomedical prevention strategies since the publication of several clinical trials highlighting the efficacy of pre-exposure prophylaxis (PrEP), knowledge of postexposure prophylaxis (PEP) and PrEP continues to remain scarce among women, especially among African American women who are disproportionally affected by HIV. In an effort to address this barrier and encourage uptake of PEP and PrEP, an electronic health (eHealth) video was created using an entertainment-education format. Objective: The study aimed to explore the feasibility, acceptability, and preference of an avatar-led, eHealth video, PEP and PrEP for Women, to increase awareness and knowledge of PEP and PrEP for HIV in a sample of African American women. Methods: A cross-sectional, Web-based study was conducted with 116 African American women aged 18 to 61 years to measure participants’ perceived acceptability of the video on a 5-point scale: poor, fair, good, very good, and excellent. Backward stepwise regression was used to the find the outcome variable of a higher rating of the PEP and PrEP for Women video. Thematic analysis was conducted to explore the reasons for recommending the video to others after watching the eHealth video. Results: Overall, 89% of the participants rated the video as good or higher. A higher rating of the educational video was significantly predicted by: no current use of drugs/alcohol (beta=−.814; P=.004), not having unprotected sex in the last 3 months (beta=−.488; P=.03), higher income (beta=.149; P=.03), lower level of education (beta=−.267; P=.005), and lower exposure to sexual assault since the age of 18 years (beta=−.313; P=.004). After watching the eHealth video, reasons for recommending the video included the video being educational, entertaining, and suitable for women. Conclusions: Utilization of an avatar-led eHealth video fostered education about PEP and PrEP among African American women who have experienced insufficient outreach for biomedical HIV strategies. This approach can be leveraged to increase awareness and usage among African American women. %M 31144667 %R 10.2196/formative.9995 %U http://formative.jmir.org/2019/2/e9995/ %U https://doi.org/10.2196/formative.9995 %U http://www.ncbi.nlm.nih.gov/pubmed/31144667 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 8 %N 2 %P e9881 %T “As If Neck Injuries Did Not Exist”: An Interview Study of Patients’ and Relatives’ Perceptions of Web Information on and Management of Whiplash Injuries in Sweden %A Bernhoff,Gabriella %A Saripanidis,Christos %A Bertilson,Bo Christer %+ Division of Family Medicine and Primary Care, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Alfred Nobels allé 23, Stockholm, SE-14183, Sweden, 46 70 732 02 32, bo.bertilson@ki.se %K self care %K patient participation %K health communication %K patient portals %K patient education handout %K patient satisfaction %K whiplash injuries %K neck pain %K chronic pain %D 2019 %7 21.05.2019 %9 Original Paper %J Interact J Med Res %G English %X Background: If purposefully designed, patient information can help individuals make well-founded health care decisions. This study was initiated to improve the information on whiplash injuries found in the national health care portal Healthcare Guide 1177, operated by the Swedish government. Objective: The objective of this study was to describe the thoughts of patients and relatives on (1) information about whiplash injuries presented in the portal and (2) the Swedish health care system’s management of whiplash injuries. Methods: A total of 5 interviews were conducted with patients (n=10) who had experienced a whiplash injury and with relatives (n=3) of such patients. The interviews were taped, transcribed verbatim, and analyzed by means of conventional content analysis. Results: The following two themes emerged from the latent content analysis: (1) confidence and trust in the public health care system and (2) a disappointment with health care encounters. Conclusions: We found that most of the study participants felt distress due to insufficient information; respondents perceived a discrepancy between the public health care system's authority and the information provided. The Web information on whiplash injuries may greatly impact patients' care decisions as well as their physical, mental, and social well-being. We would recommend detailed patient information on whiplash injuries, with less emphasis on psychology and more data on pathophysiology, prognosis, and treatment. %M 31115342 %R 10.2196/ijmr.9881 %U https://www.i-jmr.org/2019/2/e9881/ %U https://doi.org/10.2196/ijmr.9881 %U http://www.ncbi.nlm.nih.gov/pubmed/31115342 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 5 %P e12044 %T Evaluating a Video-Based, Personalized Webpage in Genitourinary Oncology Clinical Trials: A Phase 2 Randomized Trial %A McKay,Rana %A Mills,Hannah %A Werner,Lillian %A Choudhury,Atish %A Choueiri,Toni %A Jacobus,Susanna %A Pace,Amanda %A Polacek,Laura %A Pomerantz,Mark %A Prisby,Judith %A Sweeney,Christopher %A Walsh,Meghara %A Taplin,Mary-Ellen %+ Department of Medical Oncology, Dana-Farber Cancer Institute, 450 Brookline Avenue, Dana 1230, Boston, MA, 02215, United States, 1 (617) 582 7221, Mary_Taplin@dfci.harvard.edu %K cancer %K prostatic neoplasms %K kidney neoplasms %K clinical trial %K instructional films and videos %K education %D 2019 %7 02.05.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: The pace of drug discovery and approvals has led to expanding treatments for cancer patients. Although extensive research exists regarding barriers to enrollment in oncology clinical trials, there are limited studies evaluating processes to optimize patient education, oral anticancer therapy administration, and adherence for patients enrolled in clinical trials. In this study, we assess the feasibility of a video-based, personalized webpage for patients enrolled in genitourinary oncology clinical trials involving 1 or more oral anticancer therapy. Objective: The primary objective of this trial was to assess the differences in the number of patient-initiated violations in the intervention arm compared with a control arm over 4 treatment cycles. Secondary objectives included patient satisfaction, frequently asked questions by patients on the intervention arm, patient-initiated calls to study team members, and patient-reported stress levels. Methods: Eligible patients enrolling on a therapeutic clinical trial for a genitourinary malignancy were randomized 2:1 to the intervention arm or control arm. Patients randomized to the intervention arm received access to a video-based, personalized webpage, which included videos of patients’ own clinic encounters with their providers, instructional videos on medication administration and side effects, and electronic versions of educational documents. Results: A total of 99 patients were enrolled (89 were evaluable; 66 completed 4 cycles). In total, 71% (40/56) of patients in the intervention arm had 1 or more patient-initiated violation compared with 70% (23/33) in the control arm. There was no difference in the total number of violations across 4 cycles between the 2 arms (estimate=−0.0939, 95% CI−0.6295 to 0.4418, P value=.73). Median baseline satisfaction scores for the intervention and control arms were 72 and 73, respectively, indicating high levels of patient satisfaction in both arms. Median baseline patient-reported stress levels were 10 and 13 for the intervention and control arms, respectively, indicating low stress levels in both arms at baseline. Conclusions: This study is among the first to evaluate a video-based, personalized webpage that provides patients with educational videos and video recordings of clinical trial appointments. Despite not meeting the primary endpoint of reduced patient-initiated violations, this study demonstrates the feasibility of a video-based, personalized webpage in clinical trials. Future research assessing this tool might be better suited for realms outside of clinical trials and might consider the use of an endpoint that assesses patient-reported outcomes directly. A major limitation of this study was the lack of prior data for estimating the null hypothesis in this population. %M 31045501 %R 10.2196/12044 %U https://www.jmir.org/2019/5/e12044/ %U https://doi.org/10.2196/12044 %U http://www.ncbi.nlm.nih.gov/pubmed/31045501 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 8 %N 5 %P e12453 %T Effective Information Provision About the Side Effects of Treatment for Malignant Lymphoma: Protocol of a Randomized Controlled Trial Using Video Vignettes %A Labrie,Nanon %A van Dulmen,Sandra %A Kersten,Marie José %A de Haes,Hanneke JCM %A Pieterse,Arwen H %A van Weert,Julia CM %A van Spronsen,Dick Johan %A Smets,Ellen MA %A , %+ Medical Psychology, Amsterdam Public Health Research Institute, Cancer Center Amsterdam, Amsterdam University Medical Centers, Amsterdam University Medical Centers, Amsterdam,, Netherlands, 31 205664768, e.m.smets@amc.uva.nl %K physician patient relationship %K health communication %K information dissemination %K immediate recall %K trust %K symptoms %K clinical trial protocol %K video vignettes %D 2019 %7 2.5.2019 %9 Protocol %J JMIR Res Protoc %G English %X Background: Informing patients with cancer about the possible implications of prospective treatment is a crucial yet challenging task. Unfortunately, patients’ recall of medical information is generally poor and their information needs are not met. Effective information giving entails that oncologists help patients understand and recall the implications of their treatment, meanwhile fostering a trusting physician-patient relationship. Communication strategies that are often suggested to be effective are structuring and tailoring (cognition-oriented) but also are oncologists’ expressions of caring or empathy (affect-oriented). Objective: The aim of this study is to provide evidence concerning the pathways linking physician communication to (improved) consultation outcomes for patients. More specifically, the aim is to determine the effects of information structuring and information tailoring, combined with physician caring, on information recall, satisfaction with information, and trust in the physician (primary objective) and on symptom distress (secondary objective). Methods: A randomized controlled trial, systematically testing the effects of information structuring and information tailoring, each combined with caring, in 2 video-vignette experiments (2×2 and 2×2×2 design). Using an online survey platform, participants will be randomly allocated (blinded) to 1 of 12 conditions in which they are asked to view a video vignette (intervention) in which an oncologist discusses a treatment plan for malignant lymphoma with a patient. The independent variables of interest are systematically varied across conditions. The outcome measures are assessed in a survey, using validated instruments. Study participants are (former) patients with cancer and their relatives recruited via online panels and patient organizations. This protocol discusses the trial design, including the video-vignette design, intervention pretesting, and a pilot study. Results: Data collection has now been completed, and preliminary analyses will be available in Spring 2019. A total of 470 participants completed the first part of the survey and were randomized to receive the intervention. Conclusions: The results of the proposed trial will provide evidence concerning the pathways linking physician information, giving skills to (improved) consultation outcomes for patients. Trial Registration: Netherlands Trial Register NTR6153; https://www.trialregister.nl/trial/6022 (Archived by Webcite at http://www.webcitation.org/76xVV9xC8). International Registered Report Identifier (IRRID): DERR1-10.2196/12453 %R 10.2196/12453 %U http://www.researchprotocols.org/2019/5/e12453/ %U https://doi.org/10.2196/12453 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 4 %P e10830 %T “It’s Not Just Technology, It’s People”: Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management %A Vizer,Lisa M %A Eschler,Jordan %A Koo,Bon Mi %A Ralston,James %A Pratt,Wanda %A Munson,Sean %+ Division of General Medicine and Clinical Epidemiology, School of Medicine, University of North Carolina at Chapel Hill, Health Sciences Library, Rm 333A, CB 7110, 335 S Columbia St, Chapel Hill, NC, 27599-7110, United States, 1 4109082774, LMVizer@unc.edu %K consumer health informatics %K chronic illness %K patient generated health data %K patient reported outcomes %K workflow %K information seeking behavior %K shared decision making %D 2019 %7 29.04.2019 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 31033452 %R 10.2196/10830 %U http://www.jmir.org/2019/4/e10830/ %U https://doi.org/10.2196/10830 %U http://www.ncbi.nlm.nih.gov/pubmed/31033452 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 2 %N 1 %P e12134 %T Reading Level and Suitability of Congestive Heart Failure (CHF) Education in a Mobile App (CHF Info App): Descriptive Design Study %A Athilingam,Ponrathi %A Jenkins,Bradlee %A Redding,Barbara A %+ College of Nursing, University of South Florida, 12901 Bruce B Downs Blvd, MDC 22, Tampa, FL, 33612, United States, 1 8139747526, pathilin@health.usf.edu %K health literacy %K reading level %K patient education %K heart failure %K mobile app %D 2019 %7 25.04.2019 %9 Original Paper %J JMIR Aging %G English %X Background: Education at the time of diagnosis or at discharge after an index illness is a vital component of improving outcomes in congestive heart failure (CHF). About 90 million Americans have limited health literacy and have a readability level at or below a 5th-grade level, which could affect their understanding of education provided at the time of diagnosis or discharge from hospital. Objective: The aim of this paper was to assess the suitability and readability level of a mobile phone app, the CHF Info App. Methods: A descriptive design was used to assess the reading level and suitability of patient educational materials included in the CHF Info App. The suitability assessment of patient educational materials included in the CHF Info App was independently assessed by two of the authors using the 26-item Suitability Assessment of Materials (SAM) tool. The reading grade level for each of the 10 CHF educational modules included in the CHF Info App was assessed using the comprehensive online Text Readability Consensus Calculator based on the seven most-common readability formulas: the Flesch Reading Ease Formula, the Gunning Fog Index, the Flesch-Kincaid Grade Level Formula, the Coleman-Liau Index, the Simplified Measure of Gobbledygook Index, the Automated Readability Index, and the Linsear Write Formula. The reading level included the text-scale score, the ease-of-reading score, and the corresponding grade level. Results: The educational materials included in the CHF Info App ranged from a 5th-grade to an 8th-grade reading level, with a mean of a 6th-grade level, which is recommended by the American Medical Association. The SAM tool result demonstrated adequate-to-superior levels in all four components assessed, including content, appearance, visuals, and layout and design, with a total score of 77%, indicating superior suitability. Conclusions: The authors conclude that the CHF Info App will be suitable and meet the recommended health literacy level for American adult learners. Further testing of the CHF Info App in a longitudinal study is warranted to determine improvement in CHF knowledge. %M 31518265 %R 10.2196/12134 %U http://aging.jmir.org/2019/1/e12134/ %U https://doi.org/10.2196/12134 %U http://www.ncbi.nlm.nih.gov/pubmed/31518265 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 4 %P e11584 %T Usability of Health Information Websites Designed for Adolescents: Systematic Review, Neurodevelopmental Model, and Design Brief %A Reen,Gurpreet Kaur %A Muirhead,Linden %A Langdon,Dawn Wendy %+ University of Oxford, Department of Experimental Psychology, Oxford, OX2 6AE, United Kingdom, 44 7878451844, Gurpreet.reen.2014@live.rhul.ac.uk %K adolescents %K health communication %K internet %K information seeking behavior %K usability %K systematic review %D 2019 %7 23.04.2019 %9 Review %J J Med Internet Res %G English %X Background: Adolescence is a unique developmental period characterized by biological, social, and cognitive changes, as well as an interest in managing one’s own health care. Many adolescents use the internet to seek health care information. However, young people face barriers before they can understand and apply the health information that they access on the web. It is essential that usability of adolescent health websites on the internet is improved to help adolescents overcome these barriers and allow them to engage successfully with web-based health care content. Objective: The aim of this review was to synthesize the usability of specific health information websites. These findings were mapped onto the adolescent neurodevelopmental profile, and a design brief based on the findings was developed to tailor future websites for specific adolescent requirements. Methods: A systematic search conducted using PubMed, PsycINFO, and Education Resources Information Center (ERIC) identified 25 studies that assessed the usability of health information websites. Adolescent feedback was collected by a mixture of surveys, focus groups, interviews, and think-aloud procedures. Results: A majority of the information websites were developed for specific health issues that may be relevant to adolescents. The most preferred website features were interactive content such as games and quizzes, as well as videos, images, audio clips, and animations. Participants also preferred communicating with other adolescents with similar conditions or learning about their experience through real stories and testimonials. Adolescents found it difficult to use health information websites if they contained too much text, were too cluttered, or had features that made it difficult to access. The findings are considered in the context of adolescent social processes, low tolerance of delayed gratification, and attraction to novelty and mapped onto a neurodevelopmental model of adolescence. Conclusions: Young people’s feedback can determine usability and content that make a health information website easy or informative to use. Neurodevelopmental profiles and the users’ specific preferences and skills should be addressed in future development of health information websites for adolescents. %M 31012856 %R 10.2196/11584 %U http://www.jmir.org/2019/4/e11584/ %U https://doi.org/10.2196/11584 %U http://www.ncbi.nlm.nih.gov/pubmed/31012856 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 2 %N 1 %P e12243 %T Digital Information Technology Use and Patient Preferences for Internet-Based Health Education Modalities: Cross-Sectional Survey Study of Middle-Aged and Older Adults With Chronic Health Conditions %A Gordon,Nancy P %A Crouch,Elizabeth %+ Division of Research, Kaiser Permanente Northern California, 2000 Broadway, Oakland, CA, 94612, United States, 1 5108913587, nancy.gordon@kp.org %K internet %K health status disparities %K aged %K health informatics %K information technology %K health education %D 2019 %7 04.04.2019 %9 Original Paper %J JMIR Aging %G English %X Background: Health information, patient education, and self-management (health information and advice, HIA) tools are increasingly being made available to adults with chronic health conditions through internet-based health and mobile health (mHealth) digital information technologies. However, there is limited information about patient preferences for using specific types of health information and advice resources and how preferences and usage differ by age group and education. Objective: The objective of this study was to examine how use of digital information technologies and preferred methods for obtaining health information and advice varies by age group and education among middle-aged and older adults with chronic health conditions. Methods: The study used cross-sectional survey data for 9005 Kaiser Permanente Northern California members aged 45 to 85 years who responded to a mailed and Web-based health survey conducted during 2014 and 2015 and indicated having at least 1 chronic health condition. Bivariate analyses and logistic regression models with weighted data were used to estimate and compare the prevalence of digital information technology use, past-year use of internet-based health information and advice resources, and preferences for using internet-based, mHealth, and traditional health information and advice modalities for adults aged 45 to 65 years, 66 to 75 years, and 76 to 85 years. Results: The percentages of adults who used digital information technologies (computers, smartphones, internet, email, and apps), had obtained health information and advice from an internet-based resource in the past year, and who were interested in using internet-based and mHealth modalities for obtaining health information and advice declined with age. Within age group, prevalence of digital information technologies use and interest in internet-based and mHealth modalities was lower among adults with no college education versus college graduates. Differences in preferences for internet-based health information and advice modalities between the oldest and younger groups and those with lower versus higher education were substantially diminished when we restricted analyses to internet users. Conclusions: Health care providers and organizations serving middle-aged and older adults with chronic health conditions should not assume that patients, especially those who are older and less educated, want to engage with internet-based and mHealth resources. In addition, increasing the engagement of nonutilizers of digital devices and the internet with internet-based health information and advice and mHealth apps might require both instrumental (eg, providing digital information technology devices, internet, and skills training) and social support. As part of patient-centered care, it is important for providers to ascertain their patients’ use of digital information technologies and preferences for obtaining health information and patient education rather than routinely referring them to internet-based resources. It is also important for health care providers and consumer health organizations to user test their Web-based resources to make sure they are easy for older and less educated adults to use and to make sure that it remains easy for adults with chronic conditions to obtain health information and patient education using offline resources. %M 31518291 %R 10.2196/12243 %U http://aging.jmir.org/2019/1/e12243/ %U https://doi.org/10.2196/12243 %U http://www.ncbi.nlm.nih.gov/pubmed/31518291 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 3 %N 1 %P e11300 %T Challenges in the Development of e-Quit worRx: An iPad App for Smoking Cessation Counseling and Shared Decision Making in Primary Care %A Doarn,Charles R %A Vonder Meulen,Mary Beth %A Pallerla,Harini %A Acquavita,Shauna P %A Regan,Saundra %A Elder,Nancy %A Tubb,Matthew R %+ Department of Family and Community Medicine, University of Cincinnati, 231 Albert Sabin Way, ML0582, Cincinnati, OH, 45267, United States, 1 5135586148, charles.doarn@uc.edu %K mobile health %K smoking cessation %K primary care %K decision aid %D 2019 %7 29.03.2019 %9 Original Paper %J JMIR Form Res %G English %X Background: Smoking is the leading preventable cause of morbidity and mortality in the United States, killing more than 450,000 Americans. Primary care physicians (PCPs) have a unique opportunity to discuss smoking cessation evidence in a way that enhances patient-initiated change and quit attempts. Patients today are better equipped with technology such as mobile devices than ever before. Objective: The aim of this study was to evaluate the challenges in developing a tablet-based, evidence-based smoking cessation app to optimize interaction for shared decision making between PCPs and their patients who smoke. Methods: A group of interprofessional experts developed content and a graphical user interface for the decision aid and reviewed these with several focus groups to determine acceptability and usability in a small population. Results: Using a storyboard methodology and subject matter experts, a mobile app, e-Quit worRx, was developed through an iterative process. This iterative process helped finalize the content and ergonomics of the app and provided valuable feedback from both patients and provider teams. Once the app was made available, other technical and programmatic challenges arose. Conclusions: Subject matter experts, although generally amenable to one another’s disciplines, are often challenged with effective interactions, including language, scope, clinical understanding, technology awareness, and expectations. The successful development of this app and its evaluation in a clinical setting highlighted those challenges and reinforced the need for effective communications and team building. %M 30924783 %R 10.2196/11300 %U https://formative.jmir.org/2019/1/e11300/ %U https://doi.org/10.2196/11300 %U http://www.ncbi.nlm.nih.gov/pubmed/30924783 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 3 %P e11366 %T Patient Judgments About Hypertension Control: The Role of Variability, Trends, and Outliers in Visualized Blood Pressure Data %A Shaffer,Victoria Anne %A Wegier,Pete %A Valentine,KD %A Belden,Jeffery L %A Canfield,Shannon M %A Patil,Sonal J %A Popescu,Mihail %A Steege,Linsey M %A Jain,Akshay %A Koopman,Richelle J %+ University of Missouri, Department of Psychological Sciences, 320 S. 6th St., Columbia, MO, 65211, United States, 1 573 882 9094, shafferv@missouri.edu %K data visualization %K hypertension %K hypertension control %K patients’ judgment %K primary care %D 2019 %7 26.03.2019 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 30912759 %R 10.2196/11366 %U https://www.jmir.org/2019/3/e11366/ %U https://doi.org/10.2196/11366 %U http://www.ncbi.nlm.nih.gov/pubmed/30912759 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 2 %P e12234 %T The Digital Education to Limit Salt in the Home Program Improved Salt-Related Knowledge, Attitudes, and Behaviors in Parents %A Khokhar,Durreajam %A Nowson,Caryl Anne %A Margerison,Claire %A West,Madeline %A Campbell,Karen J %A Booth,Alison Olivia %A Grimes,Carley Ann %+ Institute for Physical Activity and Nutrition Research, Deakin University, Deakin University Locked Bag 20000, Waurn Ponds, Geelong, 3220, Australia, 61 39244 6223, carley.grimes@deakin.edu.au %K dietary sodium %K knowledge %K attitude %K behavior %K parent %K internet %K family %K Australia %D 2019 %7 25.02.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Currently, Australian children and adults are eating too much salt, increasing their risk of cardiovascular-related conditions. Web-based programs provide an avenue to engage the parents of primary schoolchildren in salt-specific messages, which may positively impact their own salt-related knowledge, attitudes, and behaviors (KABs). Objective: This pilot study aimed to determine whether parents’ salt-related KABs improved following participation in the Digital Education to LImit Salt in the Home (DELISH) Web-based education program. Methods: The DELISH program was a 5-week, home-delivered, Web-based intervention, with a pre- and posttest design, targeting schoolchildren aged 7 to 10 years and their parents. Parents received weekly Web-based educational newsletters and text messages and completed online pre- and postprogram surveys assessing salt-related KABs. Upon completion of the program, all parents were also invited to complete an online evaluation survey. Changes in KABs outcomes were assessed using McNemar tests and paired t tests. Results: Of the 80 parents that commenced the program, 73 parents (mean age 41.0, SD 7.0 years; 86% (63/73) females) completed both pre- and postsurveys. Overall, mean score for salt-related knowledge improved (+3.6 [standard error (SE) 0.41] points), and mean behavior score also improved (+4.5 [SE 0.61] points), indicating a higher frequency of engaging in behaviors to reduce salt in the diet, and mean attitude score decreased (−0.7 [SE 0.19] points), representing lower importance of using salt to enhance the taste of food (all P<.001). Following participation, the proportion of parents aware of the daily salt intake recommendation increased from 40% (29/73) to 74% (54/73) (P<.001), and awareness of bread as the main source of salt increased from 58% (42/73) to 95% (69/73) (P<.001). The proportion of parents who agreed that salt should be used in cooking to enhance the flavor of food decreased from 30% (22/73) to 11% (8/73) (P=.002) and the proportion who agreed that sodium information displayed on food labels was difficult to understand decreased from 52% (38/73) to 32% (23/73) (P=.009). There was a reduction in the proportion of parents who reported adding salt during cooking (55% [40/73] vs 41% [30/73]; P=.03) and at the table (32% [23/73] vs 18% [13/73]; P=.002). Of the 16 parents who completed the evaluation survey, 75% (12/16) enjoyed the program, and all parents found the newsletters to be useful. Almost all parents (15/16, 94%) agreed that the DELISH program would be useful to other parents. Conclusions: The improvement in salt-related KABs in the DELISH program indicates the potential for online technology, to disseminate simple salt reduction education messages to families with primary school–aged children. Future work should seek to improve the quality of data collected by including a larger sample size and a control group to integrate the program within the school setting to enable wider dissemination. %M 30801255 %R 10.2196/12234 %U http://www.jmir.org/2019/2/e12234/ %U https://doi.org/10.2196/12234 %U http://www.ncbi.nlm.nih.gov/pubmed/30801255 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 3 %N 1 %P e12528 %T A Digital Modality Decision Program for Patients With Advanced Chronic Kidney Disease %A Dubin,Ruth %A Rubinsky,Anna %+ San Francisco Veterans Affairs Medical Center, 4150 Clement Street, Box 111J, San Francisco, CA, 94121, United States, 1 5108474955, ruth.dubin@ucsf.edu %K chronic kidney disease %K end-stage renal disease %K online social networking %K patient education %K renal dialysis %D 2019 %7 06.02.2019 %9 Original Paper %J JMIR Form Res %G English %X Background: Patient education regarding end-stage renal disease (ESRD) has the potential to reduce adverse outcomes and increase the use of in-home renal replacement therapies. Objective: This study aimed to investigate whether an online, easily scalable education program can improve patient knowledge and facilitate decision making regarding renal replacement therapy options. Methods: We developed a 4-week online, digital educational program that included written information, short videos, and social networking features. Topics included kidney transplant, conservative management, peritoneal dialysis, in-home hemodialysis, and in-center hemodialysis. We recruited patients with advanced chronic kidney disease (stage IV and V) to enroll in the online program, and we evaluated the feasibility and potential impact of the digital program by conducting pre- and postintervention surveys in areas of knowledge, self-efficacy, and choice of ESRD care. Results: Of the 98 individuals found to be eligible for the study, 28 enrolled and signed the consent form and 25 completed the study. The average age of participants was 65 (SD 15) years, and the average estimated glomerular filtration rate was 21 (SD 6) ml/min/1.73 m2. Before the intervention, 32% of patients (8/25) were unable to make an ESRD treatment choice; after the intervention, all 25 participants made a choice. The proportion of persons who selected kidney transplant as the first choice increased from 48% (12/25) at intake to 84% (21/25) after program completion (P=.01). Among modality options, peritoneal dialysis increased as the first choice for 4/25 (16%) patients at intake to 13/25 (52%) after program completion (P=.004). We also observed significant increases in knowledge score (from 65 [SD 56] to 83 [SD 14]; P<.001) and self-efficacy score (from 3.7 [SD 0.7] to 4.3 [SD 0.5]; P<.001). Conclusions: Implementation of a digital ESRD education program is feasible and may facilitate patients’ decisions about renal replacement therapies. Larger studies are necessary to understand whether the program affects clinical outcomes. Trial Registration: ClinicalTrials.gov NCT02976220; https://clinicaltrials.gov/ct2/show/NCT02976220 %M 30724735 %R 10.2196/12528 %U http://formative.jmir.org/2019/1/e12528/ %U https://doi.org/10.2196/12528 %U http://www.ncbi.nlm.nih.gov/pubmed/30724735 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 2 %P e10404 %T Developing a Decision-Aid Website for Breast Cancer Surgery: An Action Research Approach %A Hung,Yu-Ting %A Wu,Ching-Fang %A Liang,Te-Hsin %A Chou,Shin-Shang %A Chen,Guan-Liang %A Wu,Pei-Ni %A Su,Guan-Rong %A Jang,Tsuey-Huah %A Liu,Chang-Yi %A Wang,Ching-Yen %A Tseng,Ling-Ming %A Sheu,Shuh-Jen %+ Institute of Community Health Care, School of Nursing, National Yang-Ming University, Nursing Building Room 404, Number 155, Section 2, Linong Street, Taipei, 11221, Taiwan, 886 2 28267271, sjsheu@ym.edu.tw %K breast cancer %K surgery-related decision making %K website %K action research %D 2019 %7 04.02.2019 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 30714941 %R 10.2196/10404 %U https://www.jmir.org/2019/2/e10404/ %U https://doi.org/10.2196/10404 %U http://www.ncbi.nlm.nih.gov/pubmed/30714941 %0 Journal Article %@ 2291-9279 %I JMIR Publications %V 7 %N 1 %P e10915 %T Young People’s Knowledge of Antibiotics and Vaccinations and Increasing This Knowledge Through Gaming: Mixed-Methods Study Using e-Bug %A Eley,Charlotte Victoria %A Young,Vicki Louise %A Hayes,Catherine Victoria %A Verlander,Neville Q %A McNulty,Cliodna Ann Miriam %+ Primary Care Unit, Public Health England, Microbiology Department, Gloucester Royal Hospital, Gloucester, GL1 3NN, United Kingdom, 44 02084953253, charlotte.eley@phe.gov.uk %K education %K children %K knowledge %K antibiotics %K vaccines %D 2019 %7 01.02.2019 %9 Original Paper %J JMIR Serious Games %G English %X Background: e-Bug, led by Public Health England, educates young people about important topics: microbes, infection prevention, and antibiotics. Body Busters and Stop the Spread are 2 new e-Bug educational games. Objective: This study aimed to determine students’ baseline knowledge, views on the games, and knowledge improvement. Methods: Students in 5 UK educational provisions were observed playing 2 e-Bug games. Before and after knowledge and evaluation questionnaires were completed, and student focus groups were conducted. Results: A total of 123 junior and 350 senior students completed the questionnaires. Vaccination baseline knowledge was high. Knowledge increased significantly about antibiotic use, appropriate sneezing behaviors, and vaccinations. In total, 26 student focus groups were conducted. Body Busters was engaging and enjoyable, whereas Stop the Spread was fast-paced and challenging but increased vaccination and health behavior intentions. Conclusions: e-Bug games are an effective learning tool for students to enhance knowledge about microbes, infection prevention, and antibiotics. Game-suggested improvements should help increase enjoyment. %M 30707096 %R 10.2196/10915 %U https://games.jmir.org/2019/1/e10915/ %U https://doi.org/10.2196/10915 %U http://www.ncbi.nlm.nih.gov/pubmed/30707096 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 1 %P e12128 %T Human-Centered Design of Video-Based Health Education: An Iterative, Collaborative, Community-Based Approach %A Adam,Maya %A McMahon,Shannon A %A Prober,Charles %A Bärnighausen,Till %+ Stanford Center for Health Education, Stanford School of Medicine, Stanford University, 408 Panama Mall, Stanford, CA, 94305, United States, 1 650 839 3600, madam@stanford.edu %K human-centered design %K health promotion %K health behavior %K health knowledge, attitudes, practice %K community health workers %K telemedicine %K eHealth %K mHealth %D 2019 %7 30.01.2019 %9 Tutorial %J J Med Internet Res %G English %X Drawing on 5 years of experience designing, producing, and disseminating video health education programs globally, we outline the process of creating accessible, engaging, and relevant video health education content using a community-based, human-centered design approach. We show that this approach can yield a new generation of interventions, which are better aligned with the needs and contexts of target communities. The participation of target communities and local stakeholders in the content production and design process fosters ownership of the content and increases the likelihood that the resulting intervention will resonate within its intended primary audience and be disseminated broadly. Ease of future adaptation for additional global audiences and modification of the content for multiple dissemination pathways are important early considerations to ensure scalability and long-term impact of the intervention. Recent advances in mobile technology can facilitate the dissemination of accessible, engaging health education at scale, thereby enhancing the potential impact of video-based educational tools.Accessible and engaging health education is a cornerstone of health behavior change. Especially in low- and middle-income countries, increasing access to effective health education can contribute to improved health outcomes. Prior research has identified several characteristics of effective health education interventions. These include the integration of pictures, narratives, and entertainment-education, in which the health messages that make up the educational content are embedded. However, the effectiveness and long-term impact of health messages ultimately depend on how well the end users can identify with the content that is presented. This identification, in turn, is a function of how well the messages correspond to user needs and wants and how this correspondence is communicated through the design characteristics of the health education intervention. %M 30698531 %R 10.2196/12128 %U http://www.jmir.org/2019/1/e12128/ %U https://doi.org/10.2196/12128 %U http://www.ncbi.nlm.nih.gov/pubmed/30698531 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 1 %P e9955 %T Informing Adults With Back Pain About Placebo Effects: Randomized Controlled Evaluation of a New Website With Potential to Improve Informed Consent in Clinical Research %A Bishop,Felicity L %A Greville-Harris,Maddy %A Bostock,Jennifer %A Din,Amy %A Graham,Cynthia A %A Lewith,George %A Liossi,Christina %A O'Riordan,Tim %A White,Peter %A Yardley,Lucy %+ Department of Psychology, University of Southampton, Building 44, Highfield Campus, University Road, Southampton,, United Kingdom, 44 2380599020, f.l.bishop@southampton.ac.uk %K placebos %K placebo effects %K informed consent %K research ethics %K health knowledge, attitudes, practice %K internet %D 2019 %7 17.01.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Placebo effects and their underpinning mechanisms are increasingly well understood. However, this is poorly communicated to participants in placebo-controlled trials. For valid informed consent, participants should be informed about the potential benefits and risks of participating in placebo-controlled trials. Existing information leaflets often fail to describe the potential benefits and adverse effects associated with placebo allocation. This study tested the effects of a new website designed to inform patients about placebo effects (The Power of Placebos, PoP). PoP was designed using qualitative methods in combination with theory- and evidence-based approaches to ensure it was engaging, informative, and addressed patients’ concerns. Objective: This study aimed to test the effects of PoP, compared with a control website, on people’s knowledge about placebo and the ability to make an informed choice about taking part in a placebo-controlled trial. Methods: A total of 350 adults with back pain recruited from 26 general practices in Southern England participated in this Web-based study. Participants were randomly assigned to PoP (which presented scientifically accurate information about placebo effects in an engaging way) or a control website (based on existing information leaflets from UK trials). Participants self-completed Web-based pre- and postintervention questionnaire measures of knowledge about placebo effects and preintervention questionnaire measures of attitudes toward and intentions to participate in a placebo-controlled trial. The 2 primary outcomes were (1) knowledge and (2) informed choice to take part in a placebo-controlled trial (computed from knowledge, attitudes, and intentions). Results: After viewing PoP, participants had significantly greater knowledge about placebos (mean 8.28 [SD 1.76]; n=158) than participants who viewed the control (mean 5.60 [SD 2.24]; n=174; F1,329=173.821; P<.001; η2=.346). Participants who viewed PoP were 3.16 times more likely than those who viewed the control to make an informed choice about placebos (χ21=36.5; P<.001). Conclusions: In a sample of adults with back pain, PoP increased knowledge and rates of informed choice about placebos compared with a control website. PoP could be used to improve knowledge about placebo effects in back pain. After essential further development and testing in clinical trial settings, it could support informed consent in placebo-controlled trials. %M 30664462 %R 10.2196/jmir.9955 %U https://www.jmir.org/2019/1/e9955/ %U https://doi.org/10.2196/jmir.9955 %U http://www.ncbi.nlm.nih.gov/pubmed/30664462 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 1 %P e10868 %T A Novel Insight Into the Challenges of Diagnosing Degenerative Cervical Myelopathy Using Web-Based Symptom Checkers %A Davies,Benjamin Marshall %A Munro,Colin Fraser %A Kotter,Mark RN %+ Academic Neurosurgery Unit, Department of Clinical Neurosciences, University of Cambridge, ED Adrian Building, Forvie Site, Robinson Way, Cambridge, CB2 2PY, United Kingdom, 44 7887790773, mrk25@cam.ac.uk %K cord compression %K degenerative cervical myelopathy %K diagnosis %K differential %K spondylosis %D 2019 %7 11.01.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Degenerative cervical myelopathy (DCM) is a common debilitating condition resulting from degeneration of the cervical spine. While decompressive surgery can halt disease progression, existing spinal cord damage is often permanent, leaving patients with lifelong disability. Early surgery improves the likelihood of recovery, yet the average time from the onset of symptoms to correct diagnosis is over 2 years. The majority of delays occur initially, before and within primary care, mainly due to a lack of recognition. Symptom checkers are widely used by patients before medical consultation and can be useful for preliminary triage and diagnosis. Lack of recognition of DCM by symptom checkers may contribute to the delay in diagnosis. Objective: The aims of this study were to investigate whether Web-based symptom checkers were able to recognize relevant symptoms of DCM, to characterize the DCM differential they returned , and to evaluate the diagnostic performance of recognized DCM symptoms. Methods: We pooled classical DCM symptoms from leading review articles. These symptoms were entered into the algorithms used by the top 20 symptom checker websites (N=4; Google Search). The most widely cited symptom checker, WebMD, was used to characterize the differential diagnosis for DCM symptoms. Results: A total of 31 classical DCM symptoms were identified, of which 45% (14/31) listed DCM as a differential and 10% (3/31) placed DCM in the top third of the differential. The mean differential rank for motor symptoms was significantly better than that for arthritic symptoms (P=.01) and the average differential rank for all symptoms (P=.048). The symptom checker WebMD performed best at recognizing DCM, placing the condition nearer to the top of the differential list (mean rank of 5.6) than either Healthline (rank of 12.9, P=.02) or Healthtools.AARP (rank of 15.5, P=.001). On WebMD, only one combination of symptoms resulted in DCM as the primary differential: neck, shoulder, and arm pain with hand weakness. Moreover, 151 differential diagnoses for DCM symptoms were recorded on WebMD. Multiple sclerosis and peripheral neuropathy were the most common differentials, shortlisted for 52% (16/31) and 32% (10/31) of the DCM symptoms, respectively. Conclusions: DCM symptoms are poorly identified by Web-based symptom checkers, which leads to a large differential of many other common conditions. While a diagnosis becomes more likely as the number of symptoms increases, this represents more advanced disease and will not support much-needed earlier diagnosis. Symptom checkers remain an attractive concept with potential. Further research is required to support their optimization. %M 30300137 %R 10.2196/10868 %U http://www.jmir.org/2019/1/e10868/ %U https://doi.org/10.2196/10868 %U http://www.ncbi.nlm.nih.gov/pubmed/30300137 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 6 %N 12 %P e10742 %T Assessing the Efficacy of an Educational Smartphone or Tablet App With Subdivided and Interactive Content to Increase Patients’ Medical Knowledge: Randomized Controlled Trial %A Timmers,Thomas %A Janssen,Loes %A Pronk,Yvette %A van der Zwaard,Babette C %A Koëter,Sander %A van Oostveen,Dirk %A de Boer,Stefan %A Kremers,Keetie %A Rutten,Sebastiaan %A Das,Dirk %A van Geenen,Rutger CI %A Koenraadt,Koen LM %A Kusters,Rob %A van der Weegen,Walter %+ Interactive Studios, Huisbergenweg 6, Rosmalen, 5249 JR, Netherlands, 31 73 644 6069, thomas@interactivestudios.nl %K patient education %K shared decision making %K smartphone %K decision aid %K orthopedics %D 2018 %7 21.12.2018 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Modern health care focuses on shared decision making (SDM) because of its positive effects on patient satisfaction, therapy compliance, and outcomes. Patients’ knowledge about their illness and available treatment options, gained through medical education, is one of the key drivers for SDM. Current patient education relies heavily on medical consultation and is known to be ineffective. Objective: This study aimed to determine whether providing patients with information in a subdivided, categorized, and interactive manner via an educational app for smartphone or tablet might increase the knowledge of their illness. Methods: A surgeon-blinded randomized controlled trial was conducted with 213 patients who were referred to 1 of the 6 Dutch hospitals by their general practitioner owing to knee complaints that were indicative of knee osteoarthritis. An interactive app that, in addition to standard care, actively sends informative and pertinent content to patients about their illness on a daily basis by means of push notifications in the week before their consultation. The primary outcome was the level of perceived and actual knowledge that patients had about their knee complaints and the relevant treatment options after the intervention. Results: In total, 122 patients were enrolled in the control group and 91 in the intervention group. After the intervention, the level of actual knowledge (measured on a 0-36 scale) was 52% higher in the app group (26.4 vs 17.4, P<.001). Moreover, within the app group, the level of perceived knowledge (measured on a 0-25 scale) increased by 22% during the week within the app group (from 13.5 to 16.5, P<.001), compared with no gain in the control group. Conclusions: Actively offering patients information in a subdivided (per day), categorized (per theme), and interactive (video and quiz questions) manner significantly increases the level of perceived knowledge and demonstrates a higher level of actual knowledge, compared with standard care educational practices. Trial Registration: International Standard Randomized Controlled Trial Number ISRCTN98629372; http://www.isrctn.com/ISRCTN98629372 (Archived by WebCite at http://www.webcitation.org/73F5trZbb) %M 30578185 %R 10.2196/10742 %U http://mhealth.jmir.org/2018/12/e10742/ %U https://doi.org/10.2196/10742 %U http://www.ncbi.nlm.nih.gov/pubmed/30578185 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 12 %P e10647 %T How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study %A Weitzman,Elissa R %A Magane,Kara M %A Wisk,Lauren E %+ Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, 300 Longwood Avenue, BCH 3187, Boston, MA, 02115, United States, 1 617 355 3538, elissa.weitzman@childrens.harvard.edu %K aggregate research results %K decision making %K juvenile idiopathic arthritis %K patient engagement %K patient-reported outcome measures %K rheumatic disease %D 2018 %7 21.12.2018 %9 Original Paper %J J Med Internet Res %G English %X Background: Collection of patient-reported outcomes measures (PROs) may augment clinical data and inform health research, improving care, yet approaches to sustaining interest among patient cohorts in research participation are needed. One approach may involve returning aggregate research results (ARRs), which may help patients contextualize personal experiences, prompt conversations with providers or family, and encourage information seeking. This model has been demonstrated for Web-based patient-centered registries. Studies with clinical cohorts may further elucidate the model, its impacts on interest in research participation and planned actions, and potential for participants to experience this as helpful or harmful—gap areas. Objective: We sought to investigate the impacts of returning ARRs comprising summaries of PROs and clinical metrics to parents of children with rheumatic disease, assessing interest in future research participation among parents who viewed ARRs and plans for acting on returned information. Further, we sought to investigate reactions to viewing ARRs and how these reactions impacted planned actions. Methods: Clinical and PRO data were obtained about children in a national clinical disease registry, summarized, and processed into annotated infographics, comprising ARRs for children’s parents. Parents who viewed ARRs (n=111) were surveyed about the information’s perceived value and their reactions. Reaction patterns were summarized using principal components analysis (PCA), and associations among reaction patterns and interest in research participation and planned actions were estimated using multivariate logistic regression. Results: Parental endorsement of the value of ARRs for understanding their child’s condition and making care decisions was high (across 10 topics for which ARRs were shared, 42.2%-77.3% of the parents reported information was “very valuable”). Most (58/111, 52.3%) parents reported being more interested in participating in research after viewing ARRs, with the remainder reporting that their interest levels were unchanged. Reactions to viewing ARRs reflected experiencing validation/affirmation and information burden based on PCA. Reactions were not associated with child demographic or clinical characteristics and PROs, except that parents from households with less education reported greater information burden than those from more educated households (P=.007). In adjusted models, parents with higher validation/affirmation scores had increased odds of reporting heightened interest in research participation (adjusted odds ratio [AOR] 1.97, 95% CI 1.18-3.30), while higher information burden scores were associated with decreased odds of planned discussions with their child (AOR 0.59, 95% CI 0.36-0.95) and increased odds of planned discussions with providers (AOR 1.75, 95% CI 1.02-3.00). Conclusions: Returning ARRs may foster a “virtuous cycle” of research engagement, especially where ARRs are experienced favorably and affect plans to share and discuss ARRs in support of a child’s chronic disease care and treatment. Reactions to ARRs vary with education level, underscoring the need for attention to equity for this model. %M 30578228 %R 10.2196/10647 %U http://www.jmir.org/2018/12/e10647/ %U https://doi.org/10.2196/10647 %U http://www.ncbi.nlm.nih.gov/pubmed/30578228 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 12 %P e12448 %T Decision Support Tools for Regenerative Medicine: Systematic Review %A Lam,Ching %A Meinert,Edward %A Alturkistani,Abrar %A Carter,Alison R %A Karp,Jeffrey %A Yang,Aidong %A Brindley,David %A Cui,Zhanfeng %+ Healthcare Translation Research Group, Department of Paediatrics, University of Oxford, John Radcliffe Hospital, Oxford,, United Kingdom, 44 7824446808, edward.meinert@paediatrics.ox.ac.uk %K decisional tool %K systematic review %K regenerative medicine %K cell therapy %K decision support techniques %K cell- and tissue-based therapy %D 2018 %7 19.12.2018 %9 Review %J J Med Internet Res %G English %X Background: Decisional tools have demonstrated their importance in informing manufacturing and commercial decisions in the monoclonal antibody domain. Recent approved therapies in regenerative medicine have shown great clinical benefits to patients. Objective: The objective of this review was to investigate what decisional tools are available and what issues and gaps have been raised for their use in regenerative medicine. Methods: We systematically searched MEDLINE to identify articles on decision support tools relevant to tissue engineering, and cell and gene therapy, with the aim of identifying gaps for future decisional tool development. We included published studies in English including a description of decisional tools in regenerative medicines. We extracted data using a predesigned Excel table and assessed the data both quantitatively and qualitatively. Results: We identified 9 articles addressing key decisions in manufacturing and product development challenges in cell therapies. The decision objectives, parameters, assumptions, and solution methods were analyzed in detail. We found that all decisional tools focused on cell therapies, and 6 of the 9 reviews focused on allogeneic cell therapy products. We identified no available tools on tissue-engineering and gene therapy products. These studies addressed key decisions in manufacturing and product development challenges in cell therapies, such as choice of technology, through modeling. Conclusions: Our review identified a limited number of decisional tools. While the monoclonal antibodies and biologics decisional tool domain has been well developed and has shown great importance in driving more cost-effective manufacturing processes and better investment decisions, there is a lot to be learned in the regenerative medicine domain. There is ample space for expansion, especially with regard to autologous cell therapies, tissue engineering, and gene therapies. To consider the problem more comprehensively, the full needle-to-needle process should be modeled and evaluated. %M 30567696 %R 10.2196/12448 %U http://www.jmir.org/2018/12/e12448/ %U https://doi.org/10.2196/12448 %U http://www.ncbi.nlm.nih.gov/pubmed/30567696 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 12 %P e10709 %T Developing, Implementing, and Evaluating a Multimedia Patient Decision Aid Program to Reform the Informed Consent Process of a Peripherally Inserted Central Venous Catheter Procedure: Protocol for Quality Improvement  %A Sowan,Azizeh Khaled %A Beraya,Arlienita R %A Carrola,Adrian %A Reed,Charles C %A Matthews,Sherrie V %A Moodley,Tarryn %+ School of Nursing, University fo Texas Health at San Antonio, 7703 Floyd Curl Dr - MC 7975, San Antonio, TX, 8229 3900, United States, 1 210 567 5799, sowan@uthscsa.edu %K multimedia %K central venous catheters %K decision support techniques %K informed consent %K intensive care units %D 2018 %7 18.12.2018 %9 Protocol %J JMIR Res Protoc %G English %X Background: Informed consent has considerable clinical, ethical, and legal implications for patient safety and liability. Little information is available about the use of multimedia patient decision aids (PtDA) in the consent process for therapeutic invasive procedures such as the peripherally inserted central venous catheter (PICC). In addition, none of the available studies have designed their multimedia PtDAs based on the Agency for Healthcare Research and Quality’s (AHRQ) comprehensive guide for informed consent. Objective: This paper describes a patient-centered, systematic, multidisciplinary approach to develop, implement, and alpha test a multimedia PtDA to reform the informed consent process of a PICC for patients in 10 acute and intensive care units. Methods: The development, implementation, and evaluation processes of the PtDA followed the phases in the Multimedia Production Framework: preproduction, production, and postproduction. Within this framework, we applied the criteria for judging the quality of PtDAs, the AHRQ’s Health Literacy Universal Precautions Toolkit, and the AHRQ’s Patient Education Materials Assessment Tool Guide. The methodology was guided by the Interprofessional Shared Decision-Making Model and the AHRQ’s Making Informed Consent an Informed Choice guide. In the preproduction phase, we (1) reviewed the current consent form; (2) observed 18 consent processes; (3) surveyed the vascular access team (N=6 nurses) about their perception of the current process; (4) surveyed 30 patients for knowledge recall and retention, overall satisfaction, and attitude toward using a multimedia PtDA; and (5) wrote and reviewed the script for the multimedia program. The production phase focused on filming the PtDA in English and Spanish languages. The postproduction phase included integrating the multimedia programs into the care processes, developing a modified workflow for the consent process, and alpha testing of the English and Spanish PtDAs by (1) a group of 5 patients for clarity and understandability of the information; (2) nurses using the AHRQ’s Patient Education Materials Assessment Tool Audio and Video; and (3) by the multidisciplinary change team. Results: Based on the alpha testing, patients indicated that the content was easy to follow and read; nurses provided positive feedback, and their comments were mainly related to the changes in the workflow in the consent process of the PICC after using the PtDA; and the multidisciplinary change team suggested edits related to changing a few scenes. The final multimedia program consisted of 7 min and 37 s demonstrating detailed information about the PICC. Conclusions: A systematic development of PtDAs for nonurgent invasive procedures may eliminate many limitations of the conventional consent process by ensuring comprehensive, standardized, and easy-to-comprehend information and providing sufficient time for the patients to reflect on the information. To be effective, PtDAs should follow a systematic, patient-centered, evidence-based, and rigorous approach in the development, implementation, and evaluation processes. International Registered Report Identifier (IRRID): RR1-10.2196/10709 %M 30563812 %R 10.2196/10709 %U http://www.researchprotocols.org/2018/12/e10709/ %U https://doi.org/10.2196/10709 %U http://www.ncbi.nlm.nih.gov/pubmed/30563812 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 6 %N 12 %P e10026 %T Use of Mobile Devices to Help Cancer Patients Meet Their Information Needs in Non-Inpatient Settings: Systematic Review %A Richards,Rebecca %A Kinnersley,Paul %A Brain,Kate %A McCutchan,Grace %A Staffurth,John %A Wood,Fiona %+ Division of Population Medicine, Cardiff University, 5th Floor Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS, United Kingdom, 44 02920687219, richardsb3@cardiff.ac.uk %K cell phone %K smartphone %K computers, handheld %K cancer %K neoplasms %K patients %K information dissemination %K consumer health information %D 2018 %7 14.12.2018 %9 Review %J JMIR Mhealth Uhealth %G English %X Background: The shift from inpatient to outpatient cancer care means that patients are now required to manage their condition at home, away from regular supervision by clinicians. Subsequently, research has consistently reported that many patients with cancer have unmet information needs during their illness. Mobile devices, such as mobile phones and tablet computers, provide an opportunity to deliver information to patients remotely. To date, no systematic reviews have evaluated how mobile devices have been used specifically to help patients meet to their information needs. Objective: A systematic review was conducted to identify studies that describe the use of mobile interventions to enable patients with cancer meet their cancer-related information needs in non-inpatient settings, and to describe the effects and feasibility of these interventions. Methods: MEDLINE, Embase, and PsycINFO databases were searched up until January 2017. Search terms related to “mobile devices,” “information needs,” and “cancer” were used. There were no restrictions on study type in order to be as inclusive as possible. Study participants were patients with cancer undergoing treatment. Interventions had to be delivered by a mobile or handheld device, attempt to meet patients’ cancer-related information needs, and be for use in non-inpatient settings. Critical Appraisal Skills Programme checklists were used to assess the methodological quality of included studies. A narrative synthesis was performed and findings were organized by common themes found across studies. Results: The initial search yielded 1020 results. We included 23 articles describing 20 studies. Interventions aimed to improve the monitoring and management of treatment-related symptoms (17/20, 85%), directly increase patients’ knowledge related to their condition (2/20, 10%), and improve communication of symptoms to clinicians in consultations (1/20, 5%). Studies focused on adult (17/20; age range 24-87 years) and adolescent (3/20; age range 8-18 years) patients. Sample sizes ranged from 4-125, with 13 studies having 25 participants or fewer. Most studies were conducted in the United Kingdom (12/20, 52%) or United States (7/20, 30%). Of the 23 articles included, 12 were of medium quality, 9 of poor quality, and 2 of good quality. Overall, interventions were reported to be acceptable and perceived as useful and easy to use. Few technical problems were encountered. Adherence was generally consistent and high (periods ranged from 5 days to 6 months). However, there was considerable variation in use of intervention components within and between studies. Reported benefits of the interventions included improved symptom management, patient empowerment, and improved clinician-patient communication, although mixed findings were reported for patients’ health-related quality of life and anxiety. Conclusions: The current review highlighted that mobile interventions for patients with cancer are only meeting treatment or symptom-related information needs. There were no interventions designed to meet patients’ full range of cancer-related information needs, from information on psychological support to how to manage finances during cancer, and the long-term effects of treatment. More comprehensive interventions are required for patients to meet their information needs when managing their condition in non-inpatient settings. Controlled evaluations are needed to further determine the effectiveness of these types of intervention. %M 30552082 %R 10.2196/10026 %U https://mhealth.jmir.org/2018/12/e10026/ %U https://doi.org/10.2196/10026 %U http://www.ncbi.nlm.nih.gov/pubmed/30552082 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 4 %N 2 %P e10676 %T Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis %A Brütting,Julia %A Steeb,Theresa %A Reinhardt,Lydia %A Berking,Carola %A Meier,Friedegund %+ Department of Dermatology, Dresden University Hospital and Medical Faculty Carl Gustav Carus, Technical University of Dresden, Fetscherstraße 74, Dresden, 01307, Germany, 49 176 207 896 27, julia.bruetting@uniklinikum-dresden.de %K melanoma %K immunotherapy %K internet %K patient education %K quality %K readability %K websites %K reliability %K information %D 2018 %7 13.12.2018 %9 Original Paper %J JMIR Cancer %G English %X 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. %M 30545808 %R 10.2196/10676 %U https://cancer.jmir.org/2018/2/e10676/ %U https://doi.org/10.2196/10676 %U http://www.ncbi.nlm.nih.gov/pubmed/30545808 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 1 %N 2 %P e12145 %T Testing a Photo Story Intervention in Paper Versus Electronic Tablet Format Compared to a Traditional Brochure Among Older Adults in Germany: Randomized Controlled Trial %A Tan,Shu Ling %A Whittal,Amanda %A Lippke,Sonia %+ Institute of Sport and Exercise Sciences, Department of Social Sciences of Sports, University of Münster, Horstmarer Landweg 62b, Münster, 48149, Germany, 49 2518332175, shuling.tan@uni-muenster.de %K photo story %K traditional brochure %K health literacy %K communication %K older adults %K tablet intervention %K electronic/information technology %K primary care consultation %D 2018 %7 06.12.2018 %9 Original Paper %J JMIR Aging %G English %X Background: To increase effective communication in primary care consultations among older adults in Germany, the photo story is considered to be a useful tool based on Bandura’s social cognitive theory. With information technology helping to increase effective communication, the use of tablets is gaining attention in health care settings, especially with older adults. However, the effectiveness of tablet technology and photo stories has rarely been tested. Objective: The aim is to compare the effectiveness of a photo story intervention to a traditional brochure. Both were delivered either in paper or tablet format. Methods: A trial was conducted with 126 older adults, aged 50 years and older, who were approached and recruited by researchers and administrative staff from senior day care, doctors in rehabilitation centers, and trainers in sports clubs in Germany. Open and face-to-face assessment methodologies were used. Participants were randomly assigned to one of four intervention conditions: traditional brochure in paper format (condition 1) and tablet format (condition 2), and photo story in paper format (condition 3) and tablet format (condition 4). Each participant received a questionnaire and either the traditional brochure or photo story in a paper or tablet version. To evaluate the effectiveness of each intervention, participants completed evaluation questionnaires before and after each intervention. The second part of the questionnaire measured different indicators of health literacy, communication skills, health measurements, and possible underlying mechanisms. Results: Compared to the traditional brochure, participants considered the photo story easier to understand (t124=2.62, P=.01) and more informative (t124=–2.17, P=.03). Participants preferred the paper format because they found it less monotonous (t124=–3.05, P=.003), less boring (t124=–2.65, P=.009), and not too long (t124=–2.26, P=.03) compared to the tablet format. Among all conditions, the traditional brochure with a tablet (condition 2) was also perceived as more monotonous (mean 3.07, SD 1.08), boring (mean 2.77, SD 1.19), and too long to read (mean 2.50, SD 1.33) in comparison to the traditional brochure in paper format (condition 1). Moreover, the participants scored significantly higher on self-referencing on the traditional brochure in paper format (condition 1) than tablet format for both types of the brochure (conditions 2 and 4). Conclusions: Traditional brochures on a tablet seem to be the least effective communication option in primary care consultations among all conditions for older adults. The findings might be specific for the current generation of older adults in Germany and need to be replicated in other countries with larger sample sizes. Although information technology brings advantages, such as effective interventions in different fields and settings, it may also come with several disadvantages, such as technical requirements of the users and devices. These should be considered when integrating information technology into wider situations and populations. Trial Registration: ClinicalTrials.gov NCT02502292; https://clinicaltrials.gov/ct2/show/NCT02502292 (Archived by Webcite at http://www.webcitation.org/747jdJ8pU) %M 31518254 %R 10.2196/12145 %U http://aging.jmir.org/2018/2/e12145/ %U https://doi.org/10.2196/12145 %U http://www.ncbi.nlm.nih.gov/pubmed/31518254 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 1 %N 2 %P e10463 %T Fertility Preservation in Children and Adolescents With Cancer: Pilot of a Decision Aid for Parents of Children and Adolescents With Cancer %A Allingham,Catherine %A Gillam,Lynn %A McCarthy,Maria %A Zacharin,Margaret %A Jayasuriya,Sadunee %A Heloury,Yves %A Orme,Lisa %A Sullivan,Michael %A Peate,Michelle %A Jayasinghe,Yasmin %+ Department of Obstetrics & Gynaecology, The Royal Women’s Hospital, University of Melbourne, 20 Flemington Road, Parkville, 3152, Australia, 61 38345 3721, yasmin.jayasinghe@unimelb.edu.au %K adolescent %K cancer %K decision aid %K fertility preservation %K pediatric %K shared decision making %K Values Clarification Exercise %D 2018 %7 28.11.2018 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often made by parents as proxy decision makers at the time of cancer diagnosis, and is time-sensitive (needing to occur before the cancer treatment begins). Furthermore, FP procedures in children and adolescents are experimental and cannot guarantee future fertility. An uninformed decision may result in future decision regret. Objective: This study aimed to assess the acceptability, usability, and feasibility of a Web-based FP decision aid (DA) in parents of children and adolescents with cancer and clinicians. Fertility knowledge and decision regret were compared in families who reviewed the DA compared with those who did not. Methods: The Web-based DA was developed according to the International Patient Decision Aid Standards. A cross-sectional study of parents of patients with cancer, who discussed fertility, and clinicians at a tertiary children’s hospital was undertaken. The acceptability, usability, and feasibility of the DA were assessed using a pre-post survey design. Measures included the validated Decision Regret Scale, a purpose-designed fertility-related knowledge scale, questions regarding satisfaction with the DA, and open-ended responses for additional feedback. Furthermore, clinicians involved in FP were also invited to review the DA. Results: We enrolled 34 parents and 11 clinicians in this study. Participants who reviewed the DA (15 parents and 11 clinicians) expressed satisfaction with its content and functionality. Parents reported an improved understanding of cancer treatments, infertility, and FP procedures and did not report greater decision regret after DA review. Most parents (13/15, 86%) would recommend the DA to other parents. All clinicians had a consensus that this was a valid and relevant information source for all involved in fertility care. Conclusions: It is an international standard of care to discuss the impact of cancer treatment on fertility before cancer treatment. This is the first fertility DA for parents of children and adolescents with cancer and is found to be relevant and acceptable by parents and clinicians. This DA has the potential to help support parents to make informed fertility-related decisions for their children and adolescents. However, future research is needed to assess the impact of the DA on prospective decision making. %M 31518288 %R 10.2196/10463 %U http://pediatrics.jmir.org/2018/2/e10463/ %U https://doi.org/10.2196/10463 %U http://www.ncbi.nlm.nih.gov/pubmed/31518288 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 6 %N 4 %P e11056 %T Effect of a Multimedia Patient Decision Aid to Supplement the Informed Consent Process of a Peripherally Inserted Central Venous Catheter Procedure: Pre-Post Quasi-Experimental Study %A Sowan,Azizeh K %A Beraya,Arlienita R %A Carrola,Adrian %A Reed,Charles %+ School of Nursing, University of Texas Health at San Antonio, Suite 2.628, 7703 Floyd Curl Drive, San Antonio, TX, 78229, United States, 1 210 567 5799, sowan@uthscsa.edu %K multimedia %K central venous catheters %K decision support techniques %K informed consent %K intensive care units %D 2018 %7 28.11.2018 %9 Original Paper %J JMIR Med Inform %G English %X Background: Informed consent is a complex process to help patients engage in care processes and reach the best treatment decisions. There are many limitations to the conventional consent process that is based on oral discussion of information related to treatment procedures by the health care provider. A conclusive body of research supports the effectiveness of multimedia patient decision aids (PtDAs) in the consent process in terms of patient satisfaction, increased knowledge about the procedure, reduced anxiety level, and higher engagement in the decision making. Little information is available about the effectiveness of multimedia PtDAs in the consent process of invasive therapeutic procedures such as the peripherally inserted central venous catheter (PICC). Objective: The objective of this study was to examine the effectiveness of a multimedia PtDA in supplementing the consent process of the PICC for patients in 10 acute and intensive care units in terms of knowledge recall, knowledge retention, satisfaction with the consent process, and satisfaction with the PICC multimedia PtDA. Methods: This pre-post quasi-experimental study included 130 patients for whom a PICC was ordered. Patients in the control group (n=65) received the conventional consent process for the PICC, while those in the intervention group (n=65) received the multimedia PtDA to support the consent process of a PICC. All patients were surveyed for knowledge recall and retention about the procedure and satisfaction with the consent process. Patients in the intervention group were also surveyed for their satisfaction with the multimedia PtDA. Results: Compared with the control group, patients in the intervention group scored around 2 points higher on knowledge recall (t125=4.9, P<.001) and knowledge retention (t126=4.8, P<.001). All patients in the intervention group were highly satisfied with the multimedia PtDA, with a mean score of >4.5 out of 5 on all items. Items with the highest mean scores were related to the effect of the multimedia PtDA on knowledge retention (mean 4.9 [SD 0.2]), patient readiness to learn (mean 4.8 [SD 0.5]), complete understanding of the procedure-related complications (mean 4.8 [SD 0.4]), and patient role in maintaining the safety of the PICC (mean 4.8 [SD 0.5]). Patients in the two groups were highly satisfied with the consent process. However, 15% (10/65) patients in the control group reported that the following information was omitted from the discussion: patient and provider roles in the safety of the PICC, other treatment options, and common side effects. Furthermore, 2 patients commented that they were not ready to engage in the discussion. Conclusions: The multimedia PtDA is an effective standardized, structured, self-paced learning tool to supplement the consent process of the PICC and improve patient satisfaction with the process, knowledge recall, and knowledge retention. %M 30487117 %R 10.2196/11056 %U http://medinform.jmir.org/2018/4/e11056/ %U https://doi.org/10.2196/11056 %U http://www.ncbi.nlm.nih.gov/pubmed/30487117 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 10 %N 4 %P e12338 %T The Impact of Visualization Format and Navigational Options on Laypeople’s Perception and Preference of Surgery Information Videos: Randomized Controlled Trial and Online Survey %A Eggeling,Marie %A Bientzle,Martina %A Shiozawa,Thomas %A Cress,Ulrike %A Kimmerle,Joachim %+ Knowledge Construction Lab, Leibniz-Institut fuer Wissensmedien, Schleichstr 6, Tuebingen, 72076, Germany, 49 7071979 ext 363, j.kimmerle@iwm-tuebingen.de %K attitude %K decision aids %K emotions %K informed decision making %K knowledge acquisition %K medical decision making %K surgery %K video %D 2018 %7 22.11.2018 %9 Original Paper %J J Participat Med %G English %X Background: Patients need to be educated about possible treatment choices in order to make informed medical decisions. As most patients are medical laypeople, they find it difficult to understand complex medical information sufficiently to feel confident about a decision. Multimedia interventions such as videos are increasingly used to supplement personal consultations with medical professionals. Former research has shown that such interventions may have a positive effect on understanding, decision making, and emotional reactions. However, it is thus far unclear how different features of videos influence these outcomes. Objective: We aimed to examine the impact of visualization formats and basic navigational options in medical information videos about cruciate ligament surgery on recipients’ knowledge gain, emotions, attitude, and hypothetical decision-making ability. Methods: In a between-group randomized experiment (Study 1), 151 participants watched 1 of 4 videos (schematic vs realistic visualization; available vs unavailable navigational options). In a separate online survey (Study 2), 110 participants indicated their preference for a video design. All participants were medical laypeople without personal experience with a cruciate ligament rupture and were presented with a fictional decision situation. Results: In Study 1, participants who used navigational options (n=36) gained significantly more factual knowledge (P=.005) and procedural knowledge (P<.001) than participants who did not have or use navigational options (n=115). A realistic visualization induced more fear (P=.001) and disgust (P<.001) than a schematic video. Attitude toward the surgery (P=.02) and certainty regarding the decision for or against surgery (P<.001) were significantly more positive after watching the video than before watching the video. Participants who watched a schematic video rated the video significantly higher than that by participants who watched a realistic video (P<.001). There were no significant group differences with regard to hypothetical decision making and attitude toward the intervention. In addition, we did not identify any influence of the visualization format on knowledge acquisition. In Study 2, 58 of 110 participants (52.7%) indicated that they would prefer a schematic visualization, 26 (23.6%) preferred a realistic visualization, 17 (15.5%) wanted either visualization, and 9 (8.2%) did not want to watch a video at all. Of the participants who wanted to watch a video, 91 (90.1%) preferred to have navigational options, 3 (3.0%) preferred not to have navigational options, and 7 (6.9%) did not mind the options. Conclusion: Our study indicates that the perception of medical information videos is influenced by their design. Schematic videos with navigational options are the most helpful among all videos to avoid negative emotions and support knowledge acquisition when informing patients about an intervention. The visualization format and navigational options are important features that should be considered when designing medical videos for patient education. Trial Registration: Deutsches Register Klinischer Studien DRKS00016003; https://www.drks.de/drks_web/ navigate.do?navigationId= trial.HTML&TRIAL_ID=DRKS00016003 (Archived by WebCite at http://www.webcitation.org/746ASSAhN) %R 10.2196/12338 %U http://jopm.jmir.org/2018/4/e12338/ %U https://doi.org/10.2196/12338 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 4 %N 2 %P e11102 %T Assessing Preference Shift and Effects on Patient Knowledge and Decisional Conflict: Cross-Sectional Study of an Interactive Prostate-Specific Antigen Test Patient Decision Aid %A Scalia,Peter %A Elwyn,Glyn %A Kremer,Jan %A Faber,Marjan %A Durand,Marie-Anne %+ The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, One Medical Center Drive, 5th floor, Lebanon, NH, NH 03756, United States, 1 603 653 0832, Peter.Scalia@dartmouth.edu %K decision aids %K decision making %K prostate-specific antigen %K conflict %K patient preference %K prostate screening %D 2018 %7 21.11.2018 %9 Original Paper %J JMIR Cancer %G English %X Background: Randomized trials of Web-based decision aids for prostate-specific antigen (PSA) testing indicate that these interventions improve knowledge and reduce decisional conflict. However, we do not know about these tools’ impact on people who spontaneously use a PSA testing patient decision aid on the internet. Objective: The objectives of this study were to (1) determine the impact of the Web-based PSA Option Grid patient decision aid on preference shift, knowledge, and decisional conflict; (2) identify which frequently asked questions (FAQs) are associated with preference shift; and (3) explore the possible relationships between these outcomes. Methods: Data were collected between January 1, 2016, and December 30, 2017. Users who accessed the Web-based, interactive PSA Option Grid were provided with 3 options: have a PSA test, no PSA test, or unsure. Users first declared their initial preference and then completed 5 knowledge questions and a 4-item (yes or no) validated decisional conflict scale (Sure of myself, Understand information, Risk-benefit ratio, Encouragement; SURE). Next, users were presented with 10 FAQs and asked to identify their preference for each question based on the information provided. At the end, users declared their final preference and completed the same knowledge and decisional conflict questions. Paired sample t tests were employed to compare before and after knowledge and decisional conflict scores. A multinomial regression analysis was performed to determine which FAQs were associated with a shift in screening preference. Results: Of all the people who accessed the PSA Option Grid, 39.8% (186/467) completed the interactive journey and associated surveys. After excluding 22 female users, we analyzed 164 responses. At completion, users shifted their preference to “not having the PSA test” (43/164, 26.2%, vs 117/164, 71.3%; P<.001), had higher levels of knowledge (112/164, 68.3%, vs 146/164, 89.0%; P<.001), and lower decisional conflict (94/164, 57.3%, vs 18/164, 11.0%; P<.001). There were 3 FAQs associated with preference shift: “What does the test involve?” “If my PSA level is high, what are the chances that I have prostate cancer?” and “What are the risks?” We did not find any relationship between knowledge, decisional conflict, and preference shift. Conclusions: Unprompted use of the interactive PSA Option Grid leads to preference shift, increased knowledge, and reduced decisional conflict, which confirms the ability of these tools to influence decision making, even when used outside clinical encounters. %M 30463840 %R 10.2196/11102 %U http://cancer.jmir.org/2018/2/e11102/ %U https://doi.org/10.2196/11102 %U http://www.ncbi.nlm.nih.gov/pubmed/30463840 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 2 %N 2 %P e24 %T The iPrevent Online Breast Cancer Risk Assessment and Risk Management Tool: Usability and Acceptability Testing %A Lo,Louisa L %A Collins,Ian M %A Bressel,Mathias %A Butow,Phyllis %A Emery,Jon %A Keogh,Louise %A Weideman,Prue %A Steel,Emma %A Hopper,John L %A Trainer,Alison H %A Mann,Gregory B %A Bickerstaffe,Adrian %A Antoniou,Antonis C %A Cuzick,Jack %A Phillips,Kelly-Anne %+ Department of Medical Oncology, Peter MacCallum Cancer Centre, Locked Bag 1, A'Beckett Street, Victoria, 8006, Australia, 61 3 85597860, Kelly.Phillips@petermac.org %K clinical decision support %K breast cancer %K BRCA1 gene %K BRCA2 gene %K risk %K preventive health %K screening %D 2018 %7 07.11.2018 %9 Original Paper %J JMIR Formativ Res %G English %X Background: iPrevent estimates breast cancer (BC) risk and provides tailored risk management information. Objective: The objective of this study was to assess the usability and acceptability of the iPrevent prototype. Methods: Clinicians were eligible for participation in the study if they worked in primary care, breast surgery, or genetics clinics. Female patients aged 18-70 years with no personal cancer history were eligible. Clinicians were first familiarized with iPrevent using hypothetical paper-based cases and then actor scenarios; subsequently, they used iPrevent with their patients. Clinicians and patients completed the System Usability Scale (SUS) and an Acceptability questionnaire 2 weeks after using iPrevent; patients also completed measures of BC worry, anxiety, risk perception, and knowledge pre- and 2 weeks post-iPrevent. Data were summarized using descriptive statistics. Results: The SUS and Acceptability questionnaires were completed by 19 of 20 clinicians and 37 of 43 patients. Usability was above average (SUS score >68) for 68% (13/19) clinicians and 76% (28/37) patients. The amount of information provided by iPrevent was reported as “about right” by 89% (17/19) clinicians and 89% (33/37) patients and 95% (18/19) and 97% (36/37), respectively, would recommend iPrevent to others, although 53% (10/19) clinicians and 27% (10/37) patients found it too long. Exploratory analyses suggested that iPrevent could improve risk perception, decrease frequency of BC worry, and enhance BC prevention knowledge without changing state anxiety. Conclusions: The iPrevent prototype demonstrated good usability and acceptability. Because concerns about length could be an implementation barrier, data entry has been abbreviated in the publicly available version of iPrevent. %M 30684421 %R 10.2196/formative.9935 %U http://formative.jmir.org/2018/2/e24/ %U https://doi.org/10.2196/formative.9935 %U http://www.ncbi.nlm.nih.gov/pubmed/30684421 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 4 %N 2 %P e10088 %T Improving Shared Decision Making Between Patients and Clinicians: Design and Development of a Virtual Patient Simulation Tool %A Jacklin,Simon %A Maskrey,Neal %A Chapman,Stephen %+ School of Pharmacy, Keele University, Hornbeam Building, School of Pharmacy, Keele, ST55BG, United Kingdom, 44 07597935501, s.jacklin@keele.ac.uk %K clinical decision making %K education %K medical education %K mobile phone %K pharmacy education %K virtual patient %K virtual reality %D 2018 %7 06.11.2018 %9 Original Paper %J JMIR Med Educ %G English %X Background: Shared decision making (SDM) involves the formation of a collaborative partnership between the patient and clinician combining both of their expertise in order to benefit decision making. In order for clinicians to be able to carry out this skilled task, they require practice. Virtual reality, in the form of a virtual patient, could offer a potential method of facilitating this. Objective: The objective of this study was to create a virtual patient that simulated a primary care consultation, affording the opportunity to practice SDM. A second aim was to involve patients in the design of a virtual patient simulation and report the process of the design. Methods: We employed a multistep design process drawing on patient and expert involvement. Results: A virtual patient, following a narrative style, was built, which allows a user to practice and receive feedback; both clinical and communication skills are required for the simulation. The patient group provided multiple insights, which the academic team had overlooked. They pertained mostly to issues concerning the patient experience. Conclusions: It is possible to design a virtual patient that allows a learner to practice their ability to conduct SDM. Patient input into the design of virtual patient simulations can be a worthwhile activity. %M 30401667 %R 10.2196/10088 %U http://mededu.jmir.org/2018/2/e10088/ %U https://doi.org/10.2196/10088 %U http://www.ncbi.nlm.nih.gov/pubmed/30401667 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 9 %P e11510 %T Patient and Consumer Safety Risks When Using Conversational Assistants for Medical Information: An Observational Study of Siri, Alexa, and Google Assistant %A Bickmore,Timothy W %A Trinh,Ha %A Olafsson,Stefan %A O'Leary,Teresa K %A Asadi,Reza %A Rickles,Nathaniel M %A Cruz,Ricardo %+ College of Computer and Information Science, Northeastern University, 910-177, 360 Huntington Avenue, Boston, MA, 02115, United States, 1 6173735477, bickmore@ccs.neu.edu %K conversational assistant %K conversational interface %K dialogue system %K medical error %K patient safety %D 2018 %7 04.09.2018 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 30181110 %R 10.2196/11510 %U http://www.jmir.org/2018/9/e11510/ %U https://doi.org/10.2196/11510 %U http://www.ncbi.nlm.nih.gov/pubmed/30181110 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 6 %N 3 %P e10295 %T Three-Dimensional Portable Document Format (3D PDF) in Clinical Communication and Biomedical Sciences: Systematic Review of Applications, Tools, and Protocols %A Newe,Axel %A Becker,Linda %+ Chair of Medical Informatics, Friedrich-Alexander University Erlangen-Nürnberg, Wetterkreuz 13, Erlangen, 91058, Germany, 49 913185 ext 26720, axel.newe@fau.de %K 3D PDF %K 3D visualization %K interactive %K clinical communication %K biomedical science %K tools %K protocols %K apps %K online data sharing %K scholarly publishing %K electronic publishing %D 2018 %7 07.08.2018 %9 Review %J JMIR Med Inform %G English %X Background: The Portable Document Format (PDF) is the standard file format for the communication of biomedical information via the internet and for electronic scholarly publishing. Although PDF allows for the embedding of three-dimensional (3D) objects and although this technology has great potential for the communication of such data, it is not broadly used by the scientific community or by clinicians. Objective: The objective of this review was to provide an overview of existing publications that apply 3D PDF technology and the protocols and tools for the creation of model files and 3D PDFs for scholarly purposes to demonstrate the possibilities and the ways to use this technology. Methods: A systematic literature review was performed using PubMed and Google Scholar. Articles searched for were in English, peer-reviewed with biomedical reference, published since 2005 in a journal or presented at a conference or scientific meeting. Ineligible articles were removed after screening. The found literature was categorized into articles that (1) applied 3D PDF for visualization, (2) showed ways to use 3D PDF, and (3) provided tools or protocols for the creation of 3D PDFs or necessary models. Finally, the latter category was analyzed in detail to provide an overview of the state of the art. Results: The search retrieved a total of 902 items. Screening identified 200 in-scope publications, 13 covering the use of 3D PDF for medical purposes. Only one article described a clinical routine use case; all others were pure research articles. The disciplines that were covered beside medicine were many. In most cases, either animal or human anatomies were visualized. A method, protocol, software, library, or other tool for the creation of 3D PDFs or model files was described in 19 articles. Most of these tools required advanced programming skills and/or the installation of further software packages. Only one software application presented an all-in-one solution with a graphical user interface. Conclusions: The use of 3D PDF for visualization purposes in clinical communication and in biomedical publications is still not in common use, although both the necessary technique and suitable tools are available, and there are many arguments in favor of this technique. The potential of 3D PDF usage should be disseminated in the clinical and biomedical community. Furthermore, easy-to-use, standalone, and free-of-charge software tools for the creation of 3D PDFs should be developed. %M 30087092 %R 10.2196/10295 %U http://medinform.jmir.org/2018/3/e10295/ %U https://doi.org/10.2196/10295 %U http://www.ncbi.nlm.nih.gov/pubmed/30087092 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 8 %P e10779 %T Improving Consumer Understanding of Medical Text: Development and Validation of a New SubSimplify Algorithm to Automatically Generate Term Explanations in English and Spanish %A Kloehn,Nicholas %A Leroy,Gondy %A Kauchak,David %A Gu,Yang %A Colina,Sonia %A Yuan,Nicole P %A Revere,Debra %+ Department of Linguistics, University of Arizona, Communications Building, Room 109, PO Box 210025, Tucson, AZ, 85721, United States, 1 904 314 4654, nick.kloehn@gmail.com %K text simplification %K health literacy %K natural language processing %K terminology %D 2018 %7 02.08.2018 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 30072361 %R 10.2196/10779 %U http://www.jmir.org/2018/8/e10779/ %U https://doi.org/10.2196/10779 %U http://www.ncbi.nlm.nih.gov/pubmed/30072361 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 7 %P e10961 %T Scholarly Influence of the Conference and Labs of the Evaluation Forum eHealth Initiative: Review and Bibliometric Study of the 2012 to 2017 Outcomes %A Suominen,Hanna %A Kelly,Liadh %A Goeuriot,Lorraine %+ Research School of Computer Science, College of Engineering and Computer Science, The Australian National University, Building 145, Level 2, Room 35, Canberra, ACT,, Australia, 61 431 913 826, hanna.suominen@anu.edu.au %K evaluation studies as topic %K health records %K information extraction %K information storage and retrieval %K information visualization %K patient education as topic %K speech recognition %K systematic reviews %K test-set generation %K text classification %D 2018 %7 27.07.2018 %9 Original Paper %J JMIR Res Protoc %G English %X Background: The eHealth initiative of the Conference and Labs of the Evaluation Forum (CLEF) has aimed since 2012 to provide researchers working on health text analytics with annual workshops, shared development challenges and tasks, benchmark datasets, and software for processing and evaluation. In 2012, it ran as a scientific workshop with the aim of establishing an evaluation lab, and since 2013, this annual workshop has been supplemented with 3 or more preceding labs each year. An evaluation lab is an activity where the participating individuals or teams’ goal is to solve the same problem, typically using the same dataset in a given time frame. The overall purpose of this initiative is to support patients, their next of kin, clinical staff, health scientists, and health care policy makers in accessing, understanding, using, and authoring health information in a multilingual setting. In the CLEF eHealth 2013 to 2017 installations, the aim was to address patient-centric text processing. From 2015, the scope was also extended to aid both patients’ understanding and clinicians’ authoring of various types of medical content. CLEF eHealth 2017 introduced a new pilot task on technology-assisted reviews (TARs) in empirical medicine in order to support health scientists and health care policymakers’ information access. Objectives: This original research paper reports on the outcomes of the first 6 installations of CLEF eHealth from 2012 to 2017. The focus is on measuring and analyzing the scholarly influence by reviewing CLEF eHealth papers and their citations. Methods: A review and bibliometric study of the CLEF eHealth proceedings, working notes, and author-declared paper extensions were conducted. Citation content analysis was used for the publications and their citations collected from Google Scholar. Results: As many as 718 teams registered their interest in the tasks, leading to 130 teams submitting to the 15 tasks. A total of 184 papers using CLEF eHealth data generated 1299 citations, yielding a total scholarly citation influence of almost 963,000 citations for the 741 coauthors, and included authors from 33 countries across the world. Eight tasks produced statistically significant improvements (2, 3, and 3 times with P<.001, P=.009, and P=.04, respectively) in processing quality by at least 1 out of the top 3 methods. Conclusions: These substantial participation numbers, large citation counts, and significant performance improvements encourage continuing to develop these technologies to address patient needs. Consequently, data and tools have been opened for future research and development, and the CLEF eHealth initiative continues to run new challenges. %M 30054262 %R 10.2196/10961 %U http://www.researchprotocols.org/2018/7/e10961/ %U https://doi.org/10.2196/10961 %U http://www.ncbi.nlm.nih.gov/pubmed/30054262 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 4 %N 2 %P e10073 %T Online Decision Support Tool for Personalized Cancer Symptom Checking in the Community (REACT): Acceptability, Feasibility, and Usability Study %A Nieroda,Marzena Ewa %A Lophatananon,Artitaya %A McMillan,Brian %A Chen,Li-Chia %A Hughes,John %A Daniels,Rona %A Clark,James %A Rogers,Simon %A Muir,Kenneth Ross %+ Division of Management Sciences and Marketing, Alliance Manchester Business School, The University of Manchester, Booth Street West, Manchester, M13 9PL, United Kingdom, 44 161 275 6739, marzena.nieroda@manchester.ac.uk %K early detection of cancer %K cancer education %K cancer symptoms %K cancer risk %K personalized risk %K website development %K REACT %D 2018 %7 04.07.2018 %9 Original Paper %J JMIR Cancer %G English %X Background: Improving cancer survival in the UK, despite recent significant gains, remains a huge challenge. This can be attributed to, at least in part, patient and diagnostic delays, when patients are unaware they are suffering from a cancerous symptom and therefore do not visit a general practitioner promptly and/or when general practitioners fail to investigate the symptom or refer promptly. To raise awareness of symptoms that may potentially be indicative of underlying cancer among members of the public a symptom-based risk assessment model (developed for medical practitioner use and currently only used by some UK general practitioners) was utilized to develop a risk assessment tool to be offered to the public in community settings. Such a tool could help individuals recognize a symptom, which may potentially indicate cancer, faster and reduce the time taken to visit to their general practitioner. In this paper we report results about the design and development of the REACT (Risk Estimation for Additional Cancer Testing) website, a tool to be used in a community setting allowing users to complete an online questionnaire and obtain personalized cancer symptom-based risk estimation. Objective: The objectives of this study are to evaluate (1) the acceptability of REACT among the public and health care practitioners, (2) the usability of the REACT website, (3) the presentation of personalized cancer risk on the website, and (4) potential approaches to adopt REACT into community health care services in the UK. Methods: Our research consisted of multiple stages involving members of the public (n=39) and health care practitioners (n=20) in the UK. Data were collected between June 2017 and January 2018. User views were collected by (1) the “think-aloud” approach when participants using the website were asked to talk about their perceptions and feelings in relation to the website, and (2) self-reporting of website experiences through open-ended questionnaires. Data collection and data analysis continued simultaneously, allowing for website iterations between different points of data collection. Results: The results demonstrate the need for such a tool. Participants suggest the best way to offer REACT is through a guided approach, with a health care practitioner (eg, pharmacist or National Health Service Health Check nurse) present during the process of risk evaluation. User feedback, which was generally consistent across members of public and health care practitioners, has been used to inform the development of the website. The most important aspects were: simplicity, ability to evaluate multiple cancers, content emphasizing an inviting community “feel,” use (when possible) of layperson language in the symptom screening questionnaire, and a robust and positive approach to cancer communication relying on visual risk representation both with affected individuals and the entire population at risk. Conclusions: This study illustrates the benefits of involving public and stakeholders in developing and implementing a simple cancer symptom check tool within community. It also offers insights and design suggestions for user-friendly interfaces of similar health care Web-based services, especially those involving personalized risk estimation. %M 29973334 %R 10.2196/10073 %U http://cancer.jmir.org/2018/2/e10073/ %U https://doi.org/10.2196/10073 %U http://www.ncbi.nlm.nih.gov/pubmed/29973334 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 6 %P e228 %T Web-Based Versus Usual Care and Other Formats of Decision Aids to Support Prostate Cancer Screening Decisions: Systematic Review and Meta-Analysis %A Baptista,Sofia %A Teles Sampaio,Elvira %A Heleno,Bruno %A Azevedo,Luís Filipe %A Martins,Carlos %+ Department of Community Medicine, Information and Health Decision Sciences, Faculty of Medicine, University of Porto, Alameda Professor Hernâni Monteiro, Porto, 4200 - 319, Portugal, 351 910357362, sofiatbaptista@gmail.com %K decision making %K decision aid %K internet %K patient participation %K prostate %K screening %D 2018 %7 26.06.2018 %9 Review %J J Med Internet Res %G English %X Background: Prostate cancer is a leading cause of cancer among men. Because screening for prostate cancer is a controversial issue, many experts in the field have defended the use of shared decision making using validated decision aids, which can be presented in different formats (eg, written, multimedia, Web). Recent studies have concluded that decision aids improve knowledge and reduce decisional conflict. Objective: This meta-analysis aimed to investigate the impact of using Web-based decision aids to support men’s prostate cancer screening decisions in comparison with usual care and other formats of decision aids. Methods: We searched PubMed, CINAHL, PsycINFO, and Cochrane CENTRAL databases up to November 2016. This search identified randomized controlled trials, which assessed Web-based decision aids for men making a prostate cancer screening decision and reported quality of decision-making outcomes. Two reviewers independently screened citations for inclusion criteria, extracted data, and assessed risk of bias. Using a random-effects model, meta-analyses were conducted pooling results using mean differences (MD), standardized mean differences (SMD), and relative risks (RR). Results: Of 2406 unique citations, 7 randomized controlled trials met the inclusion criteria. For risk of bias, selective outcome reporting and participant/personnel blinding were mostly rated as unclear due to inadequate reporting. Based on seven items, two studies had high risk of bias for one item. Compared to usual care, Web-based decision aids increased knowledge (SMD 0.46; 95% CI 0.18-0.75), reduced decisional conflict (MD –7.07%; 95% CI –9.44 to –4.71), and reduced the practitioner control role in the decision-making process (RR 0.50; 95% CI 0.31-0.81). Web-based decision aids compared to printed decision aids yielded no differences in knowledge, decisional conflict, and participation in decision or screening behaviors. Compared to video decision aids, Web-based decision aids showed lower average knowledge scores (SMD –0.50; 95% CI –0.88 to –0.12) and a slight decrease in prostate-specific antigen screening (RR 1.12; 95% CI 1.01-1.25). Conclusions: According to this analysis, Web-based decision aids performed similarly to alternative formats (ie, printed, video) for the assessed decision-quality outcomes. The low cost, readiness, availability, and anonymity of the Web can be an advantage for increasing access to decision aids that support prostate cancer screening decisions among men. %M 29945857 %R 10.2196/jmir.9070 %U http://www.jmir.org/2018/6/e228/ %U https://doi.org/10.2196/jmir.9070 %U http://www.ncbi.nlm.nih.gov/pubmed/29945857 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 6 %P e209 %T Dissemination of a Web-Based Tool for Supporting Health Insurance Plan Decisions (Show Me Health Plans): Cross-Sectional Observational Study %A Zhao,Jingsong %A Mir,Nageen %A Ackermann,Nicole %A Kaphingst,Kimberly A %A Politi,Mary C %+ Division of Public Health Sciences, Department of Surgery, Washington University in Saint Louis, 660 South Euclid Ave, St. Louis, MO, 63110, United States, 1 (314) 747 1967, mpoliti@wustl.edu %K Affordable Care Act %K health insurance decision aid %K health literacy %K public health %D 2018 %7 20.06.2018 %9 Original Paper %J J Med Internet Res %G English %X Background: The rate of uninsured people has decreased dramatically since the Affordable Care Act was passed. To make an informed decision, consumers need assistance to understand the advantages and disadvantages of health insurance plans. The Show Me Health Plans Web-based decision support tool was developed to improve the quality of health insurance selection. In response to the promising effectiveness of Show Me Health Plans in a randomized controlled trial (RCT) and the growing need for Web-based health insurance decision support, the study team used expert recommendations for dissemination and implementation, engaged external stakeholders, and made the Show Me Health Plans tool available to the public. Objective: The purpose of this study was to implement the public dissemination of the Show Me Health Plans tool in the state of Missouri and to evaluate its impact compared to the RCT. Methods: This study used a cross-sectional observational design. Dissemination phase users were compared with users in the RCT study across the same outcome measures. Time spent using the Show Me Health Plans tool, knowledge, importance rating of 9 health insurance features, and intended plan choice match with algorithm predictions were examined. Results: During the dissemination phase (November 2016 to January 2017), 10,180 individuals visited the SMHP website, and the 1069 users who stayed on the tool for more than one second were included in our analyses. Dissemination phase users were more likely to live outside St. Louis City or County (P<.001), were less likely to be below the federal poverty level (P<.001), and had a higher income (P=.03). Overall, Show Me Health Plans users from St. Louis City or County spent more time on the Show Me Health Plans tool than those from other Missouri counties (P=.04); this association was not observed in the RCT. Total time spent on the tool was not correlated with knowledge scores, which were associated with lower poverty levels (P=.009). The users from the RCT phase were more likely to select an insurance plan that matched the tool’s recommendations (P<.001) compared with the dissemination phase users. Conclusions: The study suggests that a higher income population may be more likely to seek information and online help when making a health insurance plan decision. We found that Show Me Health Plans users in the dissemination phase were more selective in the information they reviewed. This study illustrates one way of disseminating and implementing an empirically tested Web-based decision aid tool. Distributing Web-based tools is feasible and may attract a large number of potential users, educate them on basic health insurance information, and make recommendations based on personal information and preference. However, using Web-based tools may differ according to the demographics of the general public compared to research study participants. %M 29925498 %R 10.2196/jmir.9829 %U http://www.jmir.org/2018/6/e209/ %U https://doi.org/10.2196/jmir.9829 %U http://www.ncbi.nlm.nih.gov/pubmed/29925498 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 6 %P e10525 %T A Digital Decision Support Tool to Enhance Decisional Capacity for Clinical Trial Consent: Design and Development %A Furberg,Robert D %A Ortiz,Alexa M %A Moultrie,Rebecca R %A Raspa,Melissa %A Wheeler,Anne C %A McCormack,Lauren A %A Bailey Jr,Donald B %+ Digital Health and Clinical Informatics, RTI International, 3040 E Cornwallis Road, Research Triangle Park, NC, 27709-2194, United States, 1 919 316 3726, rfurberg@rti.org %K decision support %K informed consent %K digital health %K intellectual disability %K fragile X syndrome %K telemedicine %D 2018 %7 06.06.2018 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Challenges in the clinical and research consent process indicate the need to develop tailored, supportive interventions for all individuals, especially those with limited decisional capacity. We developed a tool to enhance shared decision making and the decisional capacity for individuals with fragile X syndrome engaged in the informed consent process for a clinical trial. Objective: We describe the design and development process of a tablet-based decision support tool. Methods: Our development process for the decision support tool employed a user-centered, feature-driven design approach. We began with an environmental scan to catalog relevant mobile apps, and we conducted interviews with people with a diagnosis of fragile X syndrome and clinicians at fragile X syndrome clinics. To develop content for the decision support tool, we extracted key concepts and elements from a real clinical trial consent form and rewrote it using plain-language principles. Results: We used iterative testing to continuously evaluate and revise the decision support tool content. The tool was finalized in 2016 and contained a series of vignettes, quiz questions, and a sorting activity. A randomized controlled trial was then conducted to compare the efficacy of the decision support tool with a standard verbal presentation of material that mimicked typical informed consent practice. Conclusions: The informed consent process is primed to leverage digital health resources that promote increased understanding and engagement of research participants in the consent and research process. The process and experiences we describe may provide a model for other digital health design and development initiatives seeking to create more interactive and accessible decision support resources. Trial Registration: ClinicalTrials.gov NCT02465931; https://www.clinicaltrials.gov/ct2/show/NCT02465931 (Archived by WebCite at http://www.webcitation.org/6zx2KY9YW) %R 10.2196/10525 %U http://www.researchprotocols.org/2018/6/e10525/ %U https://doi.org/10.2196/10525 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 2 %N 1 %P e9 %T Developing a Self-Administered Decision Aid for Fecal Immunochemical Test–Based Colorectal Cancer Screening Tailored to Citizens With Lower Educational Attainment: Qualitative Study %A Gabel,Pernille %A Kirkegaard,Pia %A Larsen,Mette Bach %A Edwards,Adrian %A Andersen,Berit %+ Department of Public Health Programmes, Randers Regional Hospital, Central Denmark Region, Skovlyvej 15, Randers NØ, DK-8930, Denmark, 45 78420185, pergab@rm.dk %K colorectal neoplasms %K mass screening %K decision support techniques %K socioeconomic factors %K qualitative research %D 2018 %7 22.05.2018 %9 Original Paper %J JMIR Formativ Res %G English %X Background: Citizens with lower educational attainments (EA) take up colorectal cancer screening to a lesser degree, and more seldom read and understand conventional screening information than citizens with average EAs. The information needs of citizens with lower EA are diverse, however, with preferences ranging from wanting clear recommendations to seeking detailed information about screening. Decision aids have been developed to support citizens with lower EA in making informed decisions about colorectal cancer screening participation, but none embrace diverse information needs. Objective: The aim of this study was to develop a self-administered decision aid for participation in fecal immunochemical test–based colorectal cancer screening. The decision aid should be tailored to citizens with lower EA and should embrace diverse information needs. Methods: The Web-based decision aid was developed according to an international development framework, with specific steps for designing, alpha testing, peer reviewing, and beta testing the decision aid. In the design phase, a prototype of the decision aid was developed based on previous studies about the information needs of lower EA citizens and the International Patient Decision Aid Standards guidelines. Alpha testing was conducted using focus group interviews and email correspondence. Peer review was conducted using email correspondence. Both tests included both lower EA citizens and health care professionals. The beta testing was conducted using telephone interviews with citizens with lower EA. Data were analyzed using thematic analysis. Results: The developed decision aid presented information in steps, allowing citizens to read as much or as little as wanted. Values clarification questions were included after each section of information, and answers were summarized in a “choice-indicator” on the last page, guiding the citizens toward a decision about screening participation. Statistics were presented in both natural frequencies, absolute risk formats and graphically. The citizens easily and intuitively navigated around the final version of the decision aid and stated that they felt encouraged to think about the benefits and harms of colorectal cancer screening without being overloaded with information. They found the decision aid easy to understand and the text of suitable length. The health care professionals agreed with the citizens on most parts; however, concerns were raised about the length and readability of the text. Conclusions: We have developed a self-administered decision aid presenting information in steps. We involved both citizens and health care professionals to target the decision aid for citizens with lower EA. This decision aid represents a new way of communicating detailed information and may be able to enhance informed choices about colorectal cancer screening participation among citizens with lower EA. %M 30684402 %R 10.2196/formative.9696 %U http://formative.jmir.org/2018/1/e9/ %U https://doi.org/10.2196/formative.9696 %U http://www.ncbi.nlm.nih.gov/pubmed/30684402 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 10 %N 2 %P e7 %T A Decision Aid to Support Shared Decision Making About Mechanical Ventilation in Severe Chronic Obstructive Pulmonary Disease Patients (InformedTogether): Feasibility Study %A Basile,Melissa %A Andrews,Johanna %A Jacome,Sonia %A Zhang,Meng %A Kozikowski,Andrzej %A Hajizadeh,Negin %+ Department of Medicine, Northwell Health, 600 Community Drive, Suite 403, Manhasset, NY, 11031, United States, 1 516 600 1405, Nhajizadeh@northwell.edu %K Chronic Obstructive Pulmonary Disease %K COPD %K shared decision making %K life support %D 2018 %7 14.05.2018 %9 Original Paper %J J Participat Med %G English %X 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. %M 32461812 %R 10.2196/jopm.9877 %U http://jopm.jmir.org/2018/2/e7/ %U https://doi.org/10.2196/jopm.9877 %U http://www.ncbi.nlm.nih.gov/pubmed/32461812 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 5 %P e171 %T Effects of Contributor Experience on the Quality of Health-Related Wikipedia Articles %A Holtz,Peter %A Fetahu,Besnik %A Kimmerle,Joachim %+ IWM Leibniz-Institut für Wissensmedien (Knowledge Media Research Center), Knowledge Construction Lab, Schleichstraße 6, Tübingen, 72076, Germany, 49 7071979303, p.holtz@iwm-tuebingen.de %K Wikipedia %K health-information online %K collaborative knowledge construction %K contributor characteristics %D 2018 %7 10.05.2018 %9 Short Paper %J J Med Internet Res %G English %X Background: Consulting the Internet for health-related information is a common and widespread phenomenon, and Wikipedia is arguably one of the most important resources for health-related information. Therefore, it is relevant to identify factors that have an impact on the quality of health-related Wikipedia articles. Objective: In our study we have hypothesized a positive effect of contributor experience on the quality of health-related Wikipedia articles. Methods: We mined the edit history of all (as of February 2017) 18,805 articles that were listed in the categories on the portal health & fitness in the English language version of Wikipedia. We identified tags within the articles’ edit histories, which indicated potential issues with regard to the respective article’s quality or neutrality. Of all of the sampled articles, 99 (99/18,805, 0.53%) articles had at some point received at least one such tag. In our analysis we only considered those articles with a minimum of 10 edits (10,265 articles in total; 96 tagged articles, 0.94%). Additionally, to test our hypothesis, we constructed contributor profiles, where a profile consisted of all the articles edited by a contributor and the corresponding number of edits contributed. We did not differentiate between rollbacks and edits with novel content. Results: Nonparametric Mann-Whitney U-tests indicated a higher number of previously edited articles for editors of the nontagged articles (mean rank tagged 2348.23, mean rank nontagged 5159.29; U=9.25, P<.001). However, we did not find a significant difference for the contributors’ total number of edits (mean rank tagged 4872.85, mean rank nontagged 5135.48; U=0.87, P=.39). Using logistic regression analysis with the respective article’s number of edits and number of editors as covariates, only the number of edited articles yielded a significant effect on the article’s status as tagged versus nontagged (dummy-coded; Nagelkerke R2 for the full model=.17; B [SE B]=-0.001 [0.00]; Wald c2 [1]=19.70; P<.001), whereas we again found no significant effect for the mere number of edits (Nagelkerke R2 for the full model=.15; B [SE B]=0.000 [0.01]; Wald c2 [1]=0.01; P=.94). Conclusions: Our findings indicate an effect of contributor experience on the quality of health-related Wikipedia articles. However, only the number of previously edited articles was a predictor of the articles’ quality but not the mere volume of edits. More research is needed to disentangle the different aspects of contributor experience. We have discussed the implications of our findings with respect to ensuring the quality of health-related information in collaborative knowledge-building platforms. %M 29748161 %R 10.2196/jmir.9683 %U http://www.jmir.org/2018/5/e171/ %U https://doi.org/10.2196/jmir.9683 %U http://www.ncbi.nlm.nih.gov/pubmed/29748161 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 10 %N 2 %P e8 %T Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test %A Hannon,Tamara S %A Moore,Courtney M %A Cheng,Erika R %A Lynch,Dustin O %A Yazel-Smith,Lisa G %A Claxton,Gina EM %A Carroll,Aaron E %A Wiehe,Sarah E %+ Pediatric and Adolescent Comparative Effectiveness Research, Department of Pediatrics, Indiana University School of Medicine, Health Information and Translational Sciences Building, 410 West 10th Street, Room 2039, Indianapolis, IN, 46202, United States, 1 317 278 5608, tshannon@iu.edu %K adolescent health services %K patient-centered care %K research design %K diabetes mellitus, type 1 %K self-management %D 2018 %7 10.05.2018 %9 Original Paper %J J Participat Med %G English %X 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. %R 10.2196/jopm.9652 %U http://jopm.jmir.org/2018/2/e8/ %U https://doi.org/10.2196/jopm.9652 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 5 %N 2 %P e17 %T A Web-Based Treatment Decision Support Tool for Patients With Advanced Knee Arthritis: Evaluation of User Interface and Content Design %A Zheng,Hua %A Rosal,Milagros C %A Li,Wenjun %A Borg,Amy %A Yang,Wenyun %A Ayers,David C %A Franklin,Patricia D %+ Department of Orthopedics and Physical Rehabilitation, University of Massachusetts Medical School, 55 Lake Ave North, Worcester, MA, 01655, United States, 1 (508) 856 5748, patricia.franklin@umassmed.edu %K usability evaluation %K patient decision support %K knee osteoarthritis %K total knee replacement %K outcome prediction %D 2018 %7 30.04.2018 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Data-driven surgical decisions will ensure proper use and timing of surgical care. We developed a Web-based patient-centered treatment decision and assessment tool to guide treatment decisions among patients with advanced knee osteoarthritis who are considering total knee replacement surgery. Objective: The aim of this study was to examine user experience and acceptance of the Web-based treatment decision support tool among older adults. Methods: User-centered formative and summative evaluations were conducted for the tool. A sample of 28 patients who were considering total knee replacement participated in the study. Participants’ responses to the user interface design, the clarity of information, as well as usefulness, satisfaction, and acceptance of the tool were collected through qualitative (ie, individual patient interviews) and quantitative (ie, standardized Computer System Usability Questionnaire) methods. Results: Participants were older adults with a mean age of 63 (SD 11) years. Three-quarters of them had no technical questions using the tool. User interface design recommendations included larger fonts, bigger buttons, less colors, simpler navigation without extra “next page” click, less mouse movement, and clearer illustrations with simple graphs. Color-coded bar charts and outcome-specific graphs with positive action were easiest for them to understand the outcomes data. Questionnaire data revealed high satisfaction with the tool usefulness and interface quality, and also showed ease of use of the tool, regardless of age or educational status. Conclusions: We evaluated the usability of a patient-centered decision support tool designed for advanced knee arthritis patients to facilitate their knee osteoarthritis treatment decision making. The lessons learned can inform other decision support tools to improve interface and content design for older patients’ use. %M 29712620 %R 10.2196/humanfactors.8568 %U http://humanfactors.jmir.org/2018/2/e17/ %U https://doi.org/10.2196/humanfactors.8568 %U http://www.ncbi.nlm.nih.gov/pubmed/29712620 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 4 %P e143 %T Web-Based Patient Education in Orthopedics: Systematic Review %A Dekkers,Tessa %A Melles,Marijke %A Groeneveld,Bob Sander %A de Ridder,Huib %+ Faculty of Industrial Design Engineering, Delft University of Technology, Landbergstraat 15, Delft, 2628 CE, Netherlands, 31 15 27 84640, t.dekkers@tudelft.nl %K patient education as topic %K health education %K orthopedics %K internet %K humans %K preoperative care %K patient satisfaction %D 2018 %7 23.04.2018 %9 Review %J J Med Internet Res %G English %X Background: Patients with orthopedic conditions frequently use the internet to find health information. Patient education that is distributed online may form an easily accessible, time- and cost-effective alternative to education delivered through traditional channels such as one-on-one consultations or booklets. However, no systematic evidence for the comparative effectiveness of Web-based educational interventions exists. Objective: The objective of this systematic review was to examine the effects of Web-based patient education interventions for adult orthopedic patients and to compare its effectiveness with generic health information websites and traditional forms of patient education. Methods: CINAHL, the Cochrane Library, EMBASE, MEDLINE, PsycINFO, PUBMED, ScienceDirect, Scopus, and Web of Science were searched covering the period from 1995 to 2016. Peer-reviewed English and Dutch studies were included if they delivered patient education via the internet to the adult orthopedic population and assessed its effects in a controlled or observational trial. Results: A total of 10 trials reported in 14 studies involving 4172 patients were identified. Nine trials provided evidence for increased patients’ knowledge after Web-based patient education. Seven trials reported increased satisfaction and good evaluations of Web-based patient education. No compelling evidence exists for an effect of Web-based patient education on anxiety, health attitudes and behavior, or clinical outcomes. Conclusions: Web-based patient education may be offered as a time- and cost-effective alternative to current educational interventions when the objective is to improve patients’ knowledge and satisfaction. However, these findings may not be representative for the whole orthopedic patient population as most trials included considerably younger, higher-educated, and internet-savvy participants only. %M 29685869 %R 10.2196/jmir.9013 %U http://www.jmir.org/2018/4/e143/ %U https://doi.org/10.2196/jmir.9013 %U http://www.ncbi.nlm.nih.gov/pubmed/29685869 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 4 %P e107 %T A Web-Based Decision Tool to Improve Contraceptive Counseling for Women With Chronic Medical Conditions: Protocol For a Mixed Methods Implementation Study %A Wu,Justine P %A Damschroder,Laura J %A Fetters,Michael D %A Zikmund-Fisher,Brian J %A Crabtree,Benjamin F %A Hudson,Shawna V %A Ruffin IV,Mack T %A Fucinari,Juliana %A Kang,Minji %A Taichman,L Susan %A Creswell,John W %+ Department of Family Medicine, University of Michigan, 1018 Fuller Street, Ann Arbor, MI, 48103, United States, 1 998 7120, justinep@med.umich.edu %K contraception %K mobile apps %K birth control %K primary care physicians %K implementation science %K decision support techniques %K chronic disease %K multiple chronic conditions %K qualitative research %D 2018 %7 18.04.2018 %9 Protocol %J JMIR Res Protoc %G English %X Background: Women with chronic medical conditions, such as diabetes and hypertension, have a higher risk of pregnancy-related complications compared with women without medical conditions and should be offered contraception if desired. Although evidence based guidelines for contraceptive selection in the presence of medical conditions are available via the United States Medical Eligibility Criteria (US MEC), these guidelines are underutilized. Research also supports the use of decision tools to promote shared decision making between patients and providers during contraceptive counseling. Objective: The overall goal of the MiHealth, MiChoice project is to design and implement a theory-driven, Web-based tool that incorporates the US MEC (provider-level intervention) within the vehicle of a contraceptive decision tool for women with chronic medical conditions (patient-level intervention) in community-based primary care settings (practice-level intervention). This will be a 3-phase study that includes a predesign phase, a design phase, and a testing phase in a randomized controlled trial. This study protocol describes phase 1 and aim 1, which is to determine patient-, provider-, and practice-level factors that are relevant to the design and implementation of the contraceptive decision tool. Methods: This is a mixed methods implementation study. To customize the delivery of the US MEC in the decision tool, we selected high-priority constructs from the Consolidated Framework for Implementation Research and the Theoretical Domains Framework to drive data collection and analysis at the practice and provider level, respectively. A conceptual model that incorporates constructs from the transtheoretical model and the health beliefs model undergirds patient-level data collection and analysis and will inform customization of the decision tool for this population. We will recruit 6 community-based primary care practices and conduct quantitative surveys and semistructured qualitative interviews with women who have chronic medical conditions, their primary care providers (PCPs), and clinic staff, as well as field observations of practice activities. Quantitative survey data will be summarized with simple descriptive statistics and relationships between participant characteristics and contraceptive recommendations (for PCPs), and current contraceptive use (for patients) will be examined using Fisher exact test. We will conduct thematic analysis of qualitative data from interviews and field observations. The integration of data will occur by comparing, contrasting, and synthesizing qualitative and quantitative findings to inform the future development and implementation of the intervention. Results: We are currently enrolling practices and anticipate study completion in 15 months. Conclusions: This protocol describes the first phase of a multiphase mixed methods study to develop and implement a Web-based decision tool that is customized to meet the needs of women with chronic medical conditions in primary care settings. Study findings will promote contraceptive counseling via shared decision making and reflect evidence-based guidelines for contraceptive selection. Trial Registration: ClinicalTrials.gov NCT03153644; https://clinicaltrials.gov/ct2/show/NCT03153644 (Archived by WebCite at http://www.webcitation.org/6yUkA5lK8) %M 29669707 %R 10.2196/resprot.9249 %U http://www.researchprotocols.org/2018/4/e107/ %U https://doi.org/10.2196/resprot.9249 %U http://www.ncbi.nlm.nih.gov/pubmed/29669707 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 3 %P e98 %T Effect of Harm Anchors in Visual Displays of Test Results on Patient Perceptions of Urgency About Near-Normal Values: Experimental Study %A Zikmund-Fisher,Brian J %A Scherer,Aaron M %A Witteman,Holly O %A Solomon,Jacob B %A Exe,Nicole L %A Fagerlin,Angela %+ Department of Health Behavior and Health Education, University of Michigan, 1415 Washington Heights, Ann Arbor, MI, 48109-2029, United States, 1 7349369179, bzikmund@umich.edu %K decision making %K education of patients %K electronic health record %K computer graphics %K clinical laboratory information systems %D 2018 %7 26.03.2018 %9 Short Paper %J J Med Internet Res %G English %X 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. %M 29581088 %R 10.2196/jmir.8889 %U http://www.jmir.org/2018/3/e98/ %U https://doi.org/10.2196/jmir.8889 %U http://www.ncbi.nlm.nih.gov/pubmed/29581088 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 2 %P e61 %T Type 2 Diabetes Education and Support in a Virtual Environment: A Secondary Analysis of Synchronously Exchanged Social Interaction and Support %A Lewinski,Allison A %A Anderson,Ruth A %A Vorderstrasse,Allison A %A Fisher,Edwin B %A Pan,Wei %A Johnson,Constance M %+ Durham Center for Health Services Research in Primary Care, Durham Veterans Affairs Health Care System, 508 Fulton St., Attn: 558/152, Durham, NC, 27705, United States, 1 9192860411 ext 4048, allison.lewinski@duke.edu %K type 2 diabetes %K social interaction %K self-management %K virtual reality %K social support %D 2018 %7 21.02.2018 %9 Original Paper %J J Med Internet Res %G English %X Background: Virtual environments (VEs) facilitate interaction and support among individuals with chronic illness, yet the characteristics of these VE interactions remain unknown. Objective: The objective of this study was to describe social interaction and support among individuals with type 2 diabetes (T2D) who interacted in a VE. Methods: Data included VE-mediated synchronous conversations and text-chat and asynchronous emails and discussion board posts from a study that facilitated interaction among individuals with T2D and diabetes educators (N=24) in 2 types of sessions: education and support. Results: VE interactions consisted of communication techniques (how individuals interact in the VE), expressions of self-management (T2D-related topics), depth (personalization of topics), and breadth (number of topics discussed). Individuals exchanged support more often in the education (723/1170, 61.79%) than in the support (406/1170, 34.70%) sessions or outside session time (41/1170, 3.50%). Of all support exchanges, 535/1170 (45.73%) were informational, 377/1170 (32.22%) were emotional, 217/1170 (18.55%) were appraisal, and 41/1170 (3.50%) were instrumental. When comparing session types, education sessions predominately provided informational support (357/723, 49.4%), and the support sessions predominately provided emotional (159/406, 39.2%) and informational (159/406, 39.2%) support. Conclusions: VE-mediated interactions resemble those in face-to-face environments, as individuals in VEs engage in bidirectional exchanges with others to obtain self-management education and support. Similar to face-to-face environments, individuals in the VE revealed personal information, sought information, and exchanged support during the moderated education sessions and unstructured support sessions. With this versatility, VEs are able to contribute substantially to support for those with diabetes and, very likely, other chronic diseases. %M 29467118 %R 10.2196/jmir.9390 %U http://www.jmir.org/2018/2/e61/ %U https://doi.org/10.2196/jmir.9390 %U http://www.ncbi.nlm.nih.gov/pubmed/29467118 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 5 %N 1 %P e7 %T How Health Care Professionals Evaluate a Digital Intervention to Improve Medication Adherence: Qualitative Exploratory Study %A Thomson,Karen %A Brouwers,Corline %A Damman,Olga C %A de Bruijne,Martine C %A Timmermans,Danielle RM %A Melles,Marijke %+ Department of Public and Occupational Health and Amsterdam Public Health Research Institute, VU University Medical Center, Van der Boechorststraat 7, Amsterdam, 1081 BT, Netherlands, 31 204448263, c.brouwers@vumc.nl %K medication adherence %K eHealth %K shared decision making %K self-management %K patient engagement %D 2018 %7 20.02.2018 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Medication nonadherence poses a serious and a hard-to-tackle problem for many chronic diseases. Electronic health (eHealth) apps that foster patient engagement and shared decision making (SDM) may be a novel approach to improve medication adherence. Objective: The aim of this study was to investigate the perspective of health care professionals regarding a newly developed digital app aimed to improve medication adherence. Familial hypercholesterolemia (FH) was chosen as a case example. Methods: A Web-based prototype of the eHealth app—MIK—was codesigned with patients and health care professionals. After user tests with patients, we performed semistructured interviews and user tests with 12 physicians from 6 different hospitals to examine how the functionalities offered by MIK could assist physicians in their consultation and how they could be integrated into daily clinical practice. Qualitative thematic analysis was used to identify themes that covered the physicians’ evaluations. Results: On the basis of the interview data, 3 themes were identified, which were (1) perceived impact on patient-physician collaboration; (2) perceived impact on the patient’s understanding and self-management regarding medication adherence; and (3) perceived impact on clinical decisions and workflow. Conclusions: The eHealth app MIK seems to have the potential to improve the consultation between the patient and the physician in terms of collaboration and patient engagement. The impact of eHealth apps based on the concept of SDM for improving medication-taking behavior and clinical outcomes is yet to be evaluated. Insights will be useful for further development of eHealth apps aimed at improving self-management by means of patient engagement and SDM. %M 29463494 %R 10.2196/humanfactors.8948 %U http://humanfactors.jmir.org/2018/1/e7/ %U https://doi.org/10.2196/humanfactors.8948 %U http://www.ncbi.nlm.nih.gov/pubmed/29463494 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 3 %N 1 %P e4 %T Change in Glycemic Control With Use of a Digital Therapeutic in Adults With Type 2 Diabetes: Cohort Study %A Berman,Mark A %A Guthrie,Nicole L %A Edwards,Katherine L %A Appelbaum,Kevin J %A Njike,Valentine Y %A Eisenberg,David M %A Katz,David L %+ Better Therapeutics LLC, 445 Bush Street, Suite 300, San Francisco, CA,, United States, 1 617 877 0327, mark@bettertherapeutics.io %K type 2 diabetes %K mobile health %K mHealth %K lifestyle medicine %K mobile apps %K digital therapeutics %D 2018 %7 14.02.2018 %9 Original Paper %J JMIR Diabetes %G English %X Background: Intensive lifestyle change can treat and even reverse type 2 diabetes. Digital therapeutics have the potential to deliver lifestyle as medicine for diabetes at scale. Objective: This 12-week study investigates the effects of a novel digital therapeutic, FareWell, on hemoglobin A1c (HbA1c) and diabetes medication use. Methods: Adults with type 2 diabetes and a mobile phone were recruited throughout the United States using Facebook advertisements. The intervention aim was to effect a sustainable shift to a plant-based dietary pattern and regular exercise by advancing culinary literacy and lifestyle skill acquisition. The intervention was delivered by an app paired with specialized human support, also delivered digitally. Health coaching was provided every 2 weeks by telephone, and a clinical team was available for participants requiring additional support. Participants self-reported current medications and HbA1c at the beginning and end of the 12-week program. Self-efficacy related to managing diabetes and maintaining dietary changes was assessed via survey. Engagement was recorded automatically through the app. Results: We enrolled 118 participants with a baseline HbA1c >6.5%. Participants were 81.4% female (96/118) and resided in 38 US states with a mean age of 50.7 (SD 9.4) years, baseline body mass index of 38.1 (SD 8.8) kg/m2, and baseline HbA1c of 8.1% (SD 1.6). At 12 weeks, 86.2% (94/109) of participants were still using the app. Mean change in HbA1c was –0.8% (97/101, SD 1.3, P<.001) for those reporting end-study data. For participants with a baseline HbA1c >7.0% who did not change medications midstudy, HbA1c change was –1.1% (67/69, SD 1.4, P<.001). The proportion of participants with an end-study HbA1c <6.5% was 28% (22/97). After completion of the intervention, 17% (16/97) of participants reported a decrease in diabetic medication while 8% (8/97) reported an increase. A total of 57% (55/97) of participants achieved a composite outcome of reducing HbA1c, reducing diabetic medication use, or both; 92% (90/98) reported greater confidence in their ability to manage their diabetes compared to before the program, and 91% (89/98) reported greater confidence in their ability to maintain a healthy dietary pattern. Participants engaged with the app an average of 4.3 times per day. We observed a significantly greater decrease in HbA1c among participants in the highest tertile of app engagement compared to those in the lowest tertile of app engagement (P=.03). Conclusions: Clinically meaningful reductions in HbA1c were observed with use of the FareWell digital therapeutic. Greater glycemic control was observed with increasing app engagement. Engagement and retention were both high in this widely distributed sample. %M 30291074 %R 10.2196/diabetes.9591 %U http://diabetes.jmir.org/2018/1/e4/ %U https://doi.org/10.2196/diabetes.9591 %U http://www.ncbi.nlm.nih.gov/pubmed/30291074 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 4 %N 1 %P e3 %T Medical YouTube Videos and Methods of Evaluation: Literature Review %A Drozd,Brandy %A Couvillon,Emily %A Suarez,Andrea %+ McGovern Medical School of UTHealth Houston, 6431 Fannin St, Houston, TX, 77030, United States, 1 9792290001, brandy.n.drozd@uth.tmc.edu %K social media %K YouTube %K internet %K health literacy %K online education %K videos %D 2018 %7 12.02.2018 %9 Review %J JMIR Med Educ %G English %X Background: Online medical education has relevance to public health literacy and physician efficacy, yet it requires a certain standard of reliability. While the internet has the potential to be a viable medical education tool, the viewer must be able to discern which information is reliable. Objective: Our aim was to perform a literature review to determine and compare the various methods used when analyzing YouTube videos for patient education efficacy, information accuracy, and quality. Methods: In November 2016, a comprehensive search within PubMed and Embase resulted in 37 included studies. Results: The review revealed that each video evaluation study first established search terms, exclusion criteria, and methods to analyze the videos in a consistent manner. The majority of the evaluators devised a scoring system, but variations were innumerable within each study’s methods. Conclusions: In comparing the 37 studies, we found that overall, common steps were taken to evaluate the content. However, a concrete set of methods did not exist. This is notable since many patients turn to the internet for medical information yet lack the tools to evaluate the advice being given. There was, however, a common aim of discovering what health-related content the public is accessing, and how credible that material is. %M 29434018 %R 10.2196/mededu.8527 %U http://mededu.jmir.org/2018/1/e3/ %U https://doi.org/10.2196/mededu.8527 %U http://www.ncbi.nlm.nih.gov/pubmed/29434018 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 2 %P e47 %T Health Information Obtained From the Internet and Changes in Medical Decision Making: Questionnaire Development and Cross-Sectional Survey %A Chen,Yen-Yuan %A Li,Chia-Ming %A Liang,Jyh-Chong %A Tsai,Chin-Chung %+ Program of Learning Sciences, National Taiwan Normal University, No 161, Rd Heping E Sec 1, Da-An District, Taipei, 10647, Taiwan, 886 277345999, aljc@ntnu.edu.tw %K internet %K help-seeking behavior %K literacy %K decision making %D 2018 %7 12.02.2018 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 29434017 %R 10.2196/jmir.9370 %U http://www.jmir.org/2018/2/e47/ %U https://doi.org/10.2196/jmir.9370 %U http://www.ncbi.nlm.nih.gov/pubmed/29434017 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 2 %P e29 %T Clinical Validity, Understandability, and Actionability of Online Cardiovascular Disease Risk Calculators: Systematic Review %A Bonner,Carissa %A Fajardo,Michael Anthony %A Hui,Samuel %A Stubbs,Renee %A Trevena,Lyndal %+ School of Public Health, The University of Sydney, Edward Ford Building (A27) Room 226A, Camperdown,, Australia, 61 2 9351 7125, carissa.bonner@sydney.edu.au %K cardiovascular disease %K risk assessment %K risk communication %K risk formats %D 2018 %7 01.02.2018 %9 Review %J J Med Internet Res %G English %X Background: Online health information is particularly important for cardiovascular disease (CVD) prevention, where lifestyle changes are recommended until risk becomes high enough to warrant pharmacological intervention. Online information is abundant, but the quality is often poor and many people do not have adequate health literacy to access, understand, and use it effectively. Objective: This project aimed to review and evaluate the suitability of online CVD risk calculators for use by low health literate consumers in terms of clinical validity, understandability, and actionability. Methods: This systematic review of public websites from August to November 2016 used evaluation of clinical validity based on a high-risk patient profile and assessment of understandability and actionability using Patient Education Material Evaluation Tool for Print Materials. Results: A total of 67 unique webpages and 73 unique CVD risk calculators were identified. The same high-risk patient profile produced widely variable CVD risk estimates, ranging from as little as 3% to as high as a 43% risk of a CVD event over the next 10 years. One-quarter (25%) of risk calculators did not specify what model these estimates were based on. The most common clinical model was Framingham (44%), and most calculators (77%) provided a 10-year CVD risk estimate. The calculators scored moderately on understandability (mean score 64%) and poorly on actionability (mean score 19%). The absolute percentage risk was stated in most (but not all) calculators (79%), and only 18% included graphical formats consistent with recommended risk communication guidelines. Conclusions: There is a plethora of online CVD risk calculators available, but they are not readily understandable and their actionability is poor. Entering the same clinical information produces widely varying results with little explanation. Developers need to address actionability as well as clinical validity and understandability to improve usefulness to consumers with low health literacy. %M 29391344 %R 10.2196/jmir.8538 %U http://www.jmir.org/2018/2/e29/ %U https://doi.org/10.2196/jmir.8538 %U http://www.ncbi.nlm.nih.gov/pubmed/29391344 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 5 %N 1 %P e10 %T Web-Based Decision Aid to Assist Help-Seeking Choices for Young People Who Self-Harm: Outcomes From a Randomized Controlled Feasibility Trial %A Rowe,Sarah L %A Patel,Krisna %A French,Rebecca S %A Henderson,Claire %A Ougrin,Dennis %A Slade,Mike %A Moran,Paul %+ Division of Psychiatry, University College London, Maple House, 149 Tottenham Court Road, 6th Floor, London, W1T 7NF, United Kingdom, 44 07415078280, s.rowe@ucl.ac.uk %K adolescent %K self-harm %K decision aid %K intervention %K schools %K feasibility %K randomized controlled trials %K ethics %D 2018 %7 30.01.2018 %9 Original Paper %J JMIR Ment Health %G English %X Background: Adolescents who self-harm are often unsure how or where to get help. We developed a Web-based personalized decision aid (DA) designed to support young people in decision making about seeking help for their self-harm. Objective: The aim of this study was to evaluate the feasibility and acceptability of the DA intervention and the randomized controlled trial (RCT) in a school setting. Methods: We conducted a two-group, single blind, randomized controlled feasibility trial in a school setting. Participants aged 12 to 18 years who reported self-harm in the past 12 months were randomized to either a Web-based DA or to general information about mood and feelings. Feasibility of recruitment, randomization, and follow-up rates were assessed, as was acceptability of the intervention and study procedures. Descriptive data were collected on outcome measures examining decision making and help-seeking behavior. Qualitative interviews were conducted with young people, parents or carers, and staff and subjected to thematic analysis to explore their views of the DA and study processes. Results: Parental consent was a significant barrier to young people participating in the trial, with only 17.87% (208/1164) of parents or guardians who were contacted for consent responding to study invitations. Where parental consent was obtained, we were able to recruit 81.7% (170/208) of young people into the study. Of those young people screened, 13.5% (23/170) had self-harmed in the past year. Ten participants were randomized to receiving the DA, and 13 were randomized to the control group. Four-week follow-up assessments were completed with all participants. The DA had good acceptability, but qualitative interviews suggested that a DA that addressed broader mental health problems such as depression, anxiety, and self-harm may be more beneficial. Conclusions: A broad-based mental health DA addressing a wide range of psychosocial problems may be useful for young people. The requirement for parental consent is a key barrier to intervention research on self-harm in the school setting. Adaptations to the research design and the intervention are needed before generalizable research about DAs can be successfully conducted in a school setting. Trial Registration: International Standard Randomized Controlled Trial registry: ISRCTN11230559; http://www.isrctn.com/ISRCTN11230559 (Archived by WebCite at http://www.webcitation.org/6wqErsYWG) %M 29382626 %R 10.2196/mental.8098 %U http://mental.jmir.org/2018/1/e10/ %U https://doi.org/10.2196/mental.8098 %U http://www.ncbi.nlm.nih.gov/pubmed/29382626 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 20 %N 1 %P e13 %T Testimonials and Informational Videos on Branded Prescription Drug Websites: Experimental Study to Assess Influence on Consumer Knowledge and Perceptions %A Sullivan,Helen W %A O'Donoghue,Amie C %A Gard Read,Jennifer %A Amoozegar,Jacqueline B %A Aikin,Kathryn J %A Rupert,Douglas J %+ US Food and Drug Administration, 10903 New Hampshire Ave, Bldg 51, Silver Spring, MD, 20993, United States, 1 301 796 1200, helen.sullivan@fda.hhs.gov %K Internet %K marketing %K drug prescriptions %K risk %D 2018 %7 23.01.2018 %9 Original Paper %J J Med Internet Res %G English %X Background: Direct-to-consumer (DTC) promotion of prescription drugs can affect consumer behaviors and health outcomes, and Internet drug promotion is growing rapidly. Branded drug websites often capitalize on the multimedia capabilities of the Internet by using videos to emphasize drug benefits and characteristics. However, it is unknown how such videos affect consumer processing of drug information. Objective: This study aimed to examine how videos on prescription drug websites, and the inclusion of risk information in those videos, influence consumer knowledge and perceptions. Methods: We conducted an experimental study in which online panel participants with acid reflux (n=1070) or high blood pressure (n=1055) were randomly assigned to view 1 of the 10 fictitious prescription drug websites and complete a short questionnaire. On each website, we manipulated the type of video (patient testimonial, mechanism of action animation, or none) and whether the video mentioned drug risks. Results: Participants who viewed any video were less likely to recognize drug risks presented only in the website text (P≤.01). Including risk information in videos increased participants’ recognition of the risks presented in the videos (P≤.01). However, in some cases, including risk information in videos decreased participants’ recognition of the risks not presented in the videos (ie, risks presented in text only; P≤.04). Participants who viewed a video without drug risk information thought that the website placed more emphasis on benefits, compared with participants who viewed the video with drug risk information (P≤.01). Compared with participants who viewed a video without drug risk information, participants who viewed a video with drug risk information thought that the drug was less effective in the high blood pressure sample (P=.03) and thought that risks were more serious in the acid reflux sample (P=.01). There were no significant differences between risk and nonrisk video conditions on other perception measures (P>.05). In addition, we noted a few differences among the types of videos. Conclusions: Including risks in branded drug website videos may increase in-video risk retention at the expense of text-only risk retention. %M 29362205 %R 10.2196/jmir.7959 %U http://www.jmir.org/2018/1/e13/ %U https://doi.org/10.2196/jmir.7959 %U http://www.ncbi.nlm.nih.gov/pubmed/29362205 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 7 %N 1 %P e5 %T A Shared Decision-Making Tool to Prevent Substance Abuse: Protocol for a Randomized Controlled Trial %A Long,Ju %A Yuan,Juntao Michael %A Johnson,Ron Kim %+ Department of Computer Information Systems and Quantitative Methods, McCoy College of Business, Texas State University, McCoy 404, 601 University Dr, San Marcos, TX,, United States, 1 512 245 3231, jl38@txstate.edu %K SBIRT %K substance abuse %K SUD %K primary care brief intervention %D 2018 %7 11.01.2018 %9 Protocol %J JMIR Res Protoc %G English %X Background: Substance use disorder (SUD) affects over 20 million adults and costs over $700 billion annually in the United States. It is one the greatest health care challenges we face. Objective: This research project seeks to enhance the standard practice of Screening, Brief Intervention, and Referral to Treatment (SBIRT) through a mobile solution easily incorporated into primary care that will promote shared decision making and increase referral and adherence to specialty care through continued follow-up care. Methods: This research will conduct an Office of Management and Budget (OMB)–approved randomized controlled trial (RCT) in primary care and SUD specialty service providers. The RCT will recruit a total of 500 SUD patients. Recruited patients will be randomized into control and intervention arms. Both arms will take initial baseline and exit (30 days) surveys to evaluate self-reported substance use and specialty service utilization. The control arm patients will receive usual care. The intervention group patients will receive technology-enhanced SBIRT and a mobile follow-up program to track goals and substance use at home. The RCT tracks participants for 30 days after the primary care encounter. We will collect feedback from the patients during the 30 days and count the number of patients who use specialty care services in specialty care programs for tobacco, alcohol, and drug abuse (both from self-reporting and from the service providers). Results: RCT and data collection are underway. We expect to report the data results in 2018. Conclusions: We expect that significantly more intervention group patients will receive specialty SUD care within 30 days following the SBIRT encounter at the primary care clinic compared to the control group. We also expect that the intervention group patients will report a greater reduction in substance use and a greater drop in Drug Abuse Screening Test and Addition Severity Index scores within 30 days. %M 29326094 %R 10.2196/resprot.7650 %U http://www.researchprotocols.org/2018/1/e5/ %U https://doi.org/10.2196/resprot.7650 %U http://www.ncbi.nlm.nih.gov/pubmed/29326094 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 12 %P e426 %T Efficacy of a Web-Based Safety Decision Aid for Women Experiencing Intimate Partner Violence: Randomized Controlled Trial %A Koziol-McLain,Jane %A Vandal,Alain C %A Wilson,Denise %A Nada-Raja,Shyamala %A Dobbs,Terry %A McLean,Christine %A Sisk,Rose %A Eden,Karen B %A Glass,Nancy E %+ Centre for Interdisciplinary Trauma Research, Faculty of Health and Environmental Sciences, Auckland University of Technology, Private Bag 92006, Auckland, 1142, New Zealand, 64 9 921 9670, jane.koziol-mclain@aut.ac.nz %K eHealth %K intimate partner violence %K randomized controlled trial %K New Zealand %K depression %K population groups %D 2018 %7 10.01.2018 %9 Original Paper %J J Med Internet Res %G English %X Background: Intimate partner violence (IPV) is a human rights violation and leading health burden for women. Safety planning is a hallmark of specialist family violence intervention, yet only a small proportion of women access formal services. A Web-based safety decision aid may reach a wide audience of women experiencing IPV and offer the opportunity to prioritize and plan for safety for themselves and their families. Objective: The aim of this study was to test the efficacy of a Web-based safety decision aid (isafe) for women experiencing IPV. Methods: We conducted a fully automated Web-based two-arm parallel randomized controlled trial (RCT) in a general population of New Zealand women who had experienced IPV in the past 6 months. Computer-generated randomization was based on a minimization scheme with stratification by severity of violence and children. Women were randomly assigned to the password-protected intervention website (safety priority setting, danger assessment, and tailored action plan components) or control website (standard, nonindividualized information). Primary endpoints were self-reported mental health (Center for Epidemiologic Studies Depression Scale-Revised, CESD-R) and IPV exposure (Severity of Violence Against Women Scale, SVAWS) at 12-month follow-up. Analyses were by intention to treat. Results: Women were recruited from September 2012 to September 2014. Participants were aged between 16 and 60 years, 27% (111/412) self-identified as Māori (indigenous New Zealand), and 51% (210/412) reported at baseline that they were unsure of their future plans for their partner relationship. Among the 412 women recruited, retention at 12 months was 87%. The adjusted estimated intervention effect for SVAWS was −12.44 (95% CI −23.35 to −1.54) for Māori and 0.76 (95% CI −5.57 to 7.09) for non-Māori. The adjusted intervention effect for CESD-R was −7.75 (95% CI −15.57 to 0.07) for Māori and 1.36 (−3.16 to 5.88) for non-Māori. No study-related adverse events were reported. Conclusions: The interactive, individualized Web-based isafe decision aid was effective in reducing IPV exposure limited to indigenous Māori women. Discovery of a treatment effect in a population group that experiences significant health disparities is a welcome, important finding. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12612000708853; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12612000708853 (Archived by Webcite at http://www.webcitation/61MGuVXdK) %M 29321125 %R 10.2196/jmir.8617 %U http://www.jmir.org/2017/12/e426/ %U https://doi.org/10.2196/jmir.8617 %U http://www.ncbi.nlm.nih.gov/pubmed/29321125 %0 Journal Article %@ 2369-2529 %I JMIR Publications %V 4 %N 2 %P e12 %T Exploring Determinants of Patient Adherence to a Portal-Supported Oncology Rehabilitation Program: Interview and Data Log Analyses %A Buimer,Hendrik P %A Tabak,Monique %A van Velsen,Lex %A van der Geest,Thea %A Hermens,Hermie %+ Department of Biophysics, Faculty of Science, Radboud University, Heijendaalseweg 135, Nijmegen, 6525 AJ Nijmegen, Netherlands, 31 24 3652428, h.buimer@donders.ru.nl %K telemedicine %K rehabilitation %K patient portals %K treatment adherence %K compliance %D 2017 %7 14.12.2017 %9 Original Paper %J JMIR Rehabil Assist Technol %G English %X Background: Telemedicine applications often do not live up to their expectations and often fail once they have reached the operational phase. Objective: The objective of this study was to explore the determinants of patient adherence to a blended care rehabilitation program, which includes a Web portal, from a patient’s perspective. Methods: Patients were enrolled in a 12-week oncology rehabilitation treatment supported by a Web portal that was developed in cooperation with patients and care professionals. Semistructured interviews were used to analyze thought processes and behavior concerning patient adherence and portal use. Interviews were conducted with patients close to the start and the end of the treatment. Besides, usage data from the portal were analyzed to gain insights into actual usage of the portal. Results: A total of 12 patients participated in the first interview, whereas 10 participated in the second round of interviews. Furthermore, portal usage of 31 patients was monitored. On average, 11 persons used the portal each week, with a maximum of 20 in the seventh week and a drop toward just one person in the weeks in the follow-up period of the treatment. From the interviews, it was derived that patients’ behavior in the treatment and use of the portal was primarily determined by extrinsic motivation cues (eg, stimulation by care professionals and patient group), perceived severity of the disease (eg, physical and mental condition), perceived ease of use (eg, accessibility of the portal and the ease with which information is found), and perceived usefulness (eg, fit with the treatment). Conclusions: The results emphasized the impact that care professionals and fellow patients have on patient adherence and portal usage. For this reason, the success of blended care telemedicine interventions seems highly dependent on the willingness of care professionals to include the technology in their treatment and stimulate usage among patients. %M 29242173 %R 10.2196/rehab.6294 %U http://rehab.jmir.org/2017/2/e12/ %U https://doi.org/10.2196/rehab.6294 %U http://www.ncbi.nlm.nih.gov/pubmed/29242173 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 12 %P e412 %T 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 %A Reid,Kathy %A Hartling,Lisa %A Ali,Samina %A Le,Anne %A Norris,Allison %A Scott,Shannon D %+ Faculty of Nursing, University of Alberta, 5-187 Edmonton Clinic Health Academy, 11405 87th Ave NW, Edmonton, AB, T6G 1C9, Canada, 1 780 492 1037, ss14@ualberta.ca %K pain %K child health %K parents %K art %D 2017 %7 14.12.2017 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 29242180 %R 10.2196/jmir.8877 %U http://www.jmir.org/2017/12/e412/ %U https://doi.org/10.2196/jmir.8877 %U http://www.ncbi.nlm.nih.gov/pubmed/29242180 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 6 %N 2 %P e24 %T How, When and Why People Seek Health Information Online: Qualitative Study in Hong Kong %A Chu,Joanna TW %A Wang,Man Ping %A Shen,Chen %A Viswanath,Kasisomayajula %A Lam,Tai Hing %A Chan,Sophia Siu Chee %+ School of Public Health, The University of Hong Kong, Patrick Manson Building, No 7, Sassoon Road, Hong Kong,, China (Hong Kong), 852 39179287, hrmrlth@hku.hk %K Internet %K information seeking behavior %K consumer health information %K focus groups %D 2017 %7 12.12.2017 %9 Original Paper %J Interact J Med Res %G English %X Background: The Internet has become an established source for health information. The number of individuals using the Internet to search for health information, ranging from healthy lifestyle advice to treatment and diseases, continues to grow. Scholars have emphasized the need to give greater voice and influence to health consumers. Hong Kong, being one of the most technologically advanced and connected cities in the world, has one of the highest Internet penetration rates in the world. Given the dearth of research in an Asian context, Hong Kong is an excellent platform to study individuals’ perceptions (eg, benefits and limitations on seeking health information online and how the information is used) on health information seeking. Objective: The aim of this paper was to study individuals’ perceptions on health information seeking and to document their Internet information–seeking behaviors. Methods: Five focus groups (n=49) were conducted from November 2015 to January 2016 with individuals across different age groups (18 years or above). Focus group contents were audiotaped, transcribed, and analyzed using thematic analysis techniques. Results: Older (55+ years) and less educated respondents were less likely to use the Internet to search for health information. Among individuals who obtained health information via the Internet, regardless of the severity of the health issue, the Internet was always the first source for information. Limited doctor consultation time and barriers to accessing professional health services were the main reasons for using the Internet. Convenience and coverage were regarded as the main advantages, whereas credibility and trustworthiness of health information were noted as limitations. The use of Web-based health information varied among individuals; hence, the implications on the doctor-patient relationship were mixed. Conclusions: The prevalent and increasing use of the Internet for health information seeking suggests the need for health care professionals to understand how it can be optimally utilized to improve health outcomes. Strategies for communicating and disseminating credible health information in a form that users can understand and use are essential. Due to the rapid technological and related behavioral changes, online health information seeking and its effects need to be closely monitored. %M 29233802 %R 10.2196/ijmr.7000 %U http://www.i-jmr.org/2017/2/e24/ %U https://doi.org/10.2196/ijmr.7000 %U http://www.ncbi.nlm.nih.gov/pubmed/29233802 %0 Journal Article %@ 2561-1011 %I JMIR Publications %V 1 %N 2 %P e7 %T The Atrial Fibrillation Health Literacy Information Technology System: Pilot Assessment %A Magnani,Jared W %A Schlusser,Courtney L %A Kimani,Everlyne %A Rollman,Bruce L %A Paasche-Orlow,Michael K %A Bickmore,Timothy W %+ Division of Cardiology, Department of Medicine, UPMC Heart and Vascular Institute, University of Pittsburgh, UPMC Presbyterian Hospital, Suite 5-B, 200 Lothrop Street, Pittsburgh, PA, 15213, United States, 1 412 648 6920, magnanij@pitt.edu %K atrial fibrillation %K mHealth %K health-related quality of life %K medication adherence %D 2017 %7 12.12.2017 %9 Original Paper %J JMIR Cardio %G English %X Background: Atrial fibrillation (AF) is a highly prevalent heart rhythm condition that has significant associated morbidity and requires chronic treatment. Mobile health (mHealth) technologies have the potential to enhance multiple aspects of AF care, including education, monitoring of symptoms, and encouraging and tracking medication adherence. We have previously implemented and tested relational agents to improve outcomes in chronic disease and sought to develop a smartphone-based relational agent for improving patient-centered outcomes in AF. Objective: The objective of this study was to pilot a smartphone-based relational agent as preparation for a randomized clinical trial, the Atrial Fibrillation Health Literacy Information Technology Trial (AF-LITT). Methods: We developed the relational agent for use by a smartphone consistent with our prior approaches. We programmed the relational agent as a computer-animated agent to simulate a face-to-face conversation and to serve as a health counselor or coach specific to AF. Relational agent’s dialogue content, informed by a review of literature, focused on patient-centered domains and qualitative interviews with patients with AF, encompassed AF education, common symptoms, adherence challenges, and patient activation. We established that the content was accessible to individuals with limited health or computer literacy. Relational agent content coordinated with use of the smartphone AliveCor Kardia heart rate and rhythm monitor. Participants (N=31) were recruited as a convenience cohort from ambulatory clinical sites and instructed to use the relational agent and Kardia for 30 days. We collected demographic, social, and clinical characteristics and conducted baseline and 30-day assessments of health-related quality of life (HRQoL) with the Atrial Fibrillation Effect on Quality of life (AFEQT) measure; self-reported medication adherence with the Morisky 8-item Medication Adherence Scale (MMAS-8); and patient activation with the Patient Activation Measure (PAM). Results: Participants (mean age 68 [SD 11]; 39% [12/31] women) used the relational agent for an average 17.8 (SD 10.0) days. The mean number of independent log-ins was 19.6 (SD 10.7), with a median of 20 times over 30 days. The mean number of Kardia uses was 26.5 (SD 5.9), and participants using Kardia were in AF for 14.3 (SD 11.0) days. AFEQT scores improved significantly from 64.5 (SD 22.9) at baseline to 76.3 (SD 19.4) units at 30 days (P<.01). We observed marginal but statistically significant improvement in self-reported medication adherence (baseline: 7.3 [SD 0.9], 30 days: 7.7 [SD 0.5]; P=.01). Assessments of acceptability identified that most of the participants found the relational agent useful, informative, and trustworthy. Conclusions: We piloted a 30-day smartphone-based intervention that combined a relational agent with dedicated content for AF alongside Kardia heart rate and rhythm monitoring. Pilot participants had favorable improvements in HRQoL and self-reported medication adherence, as well as positive responses to the intervention. These data will guide a larger, enhanced randomized trial implementing the smartphone relational agent and the Kardia monitor system. %M 29473644 %R 10.2196/cardio.8543 %U http://cardio.jmir.org/2017/2/e7/ %U https://doi.org/10.2196/cardio.8543 %U http://www.ncbi.nlm.nih.gov/pubmed/29473644 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 12 %P e365 %T The Use of Avatar Counseling for HIV/AIDS Health Education: The Examination of Self-Identity in Avatar Preferences %A Canidate,Shantrel %A Hart,Mark %+ Social and Behavioral Sciences Program, College of Public Health and Health Professions, University of Florida, 1225 Center Drive, PO Box 100182 HSC, Gainesville, FL, 32610-0182, United States, 1 3862147771, ssc1987@phhp.ufl.edu %K technology %K distance education %K learning %K avatars %D 2017 %7 01.12.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: The number of adults using the Internet to obtain health information is on the rise. An estimated 66% of the adults reportedly use the Internet to obtain health information related to a specific disease (ie, human immunodeficiency virus and acquired immunodeficiency syndrome, HIV/AIDS). Previous research has demonstrated that health information seekers use the Internet to seek answers to stigma-laden questions from health avatars. Objective: The objective of this study was to identify patterns in the choice of avatar among health information seekers (patients or public health workers) using the Internet to obtain HIV/AIDS information and to describe the demographic characteristics (age, gender, and ethnicity) of health information seekers to determine whether they preferred an avatar that was similar to their own gender and ethnicity. Methods: The Rural South Public Health Training Center (RSPHTC) partnered with the New York State Department of Health to create the HIV/AIDS Avatar project. The avatar project was created to serve as an educational resource for public health workers by providing relevant and accurate information about HIV/AIDS. First, the user was instructed to choose one of the 8 avatars that voiced responses to 100 common questions and answers about HIV/AIDS. Next, the website gave users the option to complete a brief 3-question demographic survey. Finally, the demographic characteristics of each user were compared with the chosen avatar to determine whether they preferred an avatar that was similar to their own gender and ethnicity. Results: The avatar project website was loaded with 800 videos that included the answers to the top 100 questions about HIV/AIDS voiced by 8 avatars. A total of 1119 Web-based health information seekers completed the demographic survey upon accessing the website. Of these, 55.14% (617/1119) users were female. A total of 49.96% (559/1119) users were aged between 30 and 49 years. The ethnicity of the user and the avatar was found to have the strongest connection. All the users choose the female avatar matching their own ethnicity, followed by the male avatar. Additionally, the white female avatar was chosen the most by all users regardless of the age group or gender. Conclusions: Web-based health information seekers using the Internet to access medical research information may feel more comfortable receiving the answers to HIV stigma-laden questions from avatars, rather than receiving information directly from a health care provider. Additionally, providers seeking to utilize avatars to deliver interventions in health care settings may benefit from offering individuals choices in how they receive health information. Having the ability to choose whom you seek information from may lead to an increase in knowledge and awareness and could motivate HIV-positive individuals to seek care. %M 29196281 %R 10.2196/jmir.6740 %U http://www.jmir.org/2017/12/e365/ %U https://doi.org/10.2196/jmir.6740 %U http://www.ncbi.nlm.nih.gov/pubmed/29196281 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 6 %N 10 %P e206 %T A Mobile Phone App to Support Young People in Making Shared Decisions in Therapy (Power Up): Study Protocol %A Chapman,Louise %A Edbrooke-Childs,Julian %A Martin,Kate %A Webber,Helen %A Craven,Michael P %A Hollis,Chris %A Deighton,Jessica %A Law,Roslyn %A Fonagy,Peter %A Wolpert,Miranda %+ Evidence Based Practice Unit, University College London and the Anna Freud National Centre for Children and Familes, 12 Maresfield Gardens, London,, United Kingdom, 44 020 7443 2275, julian.edbrooke-childs@annafreud.org %K shared decision making %K child and adolescent mental health services %K mHealth app %K feasibility trial %D 2017 %7 30.10.2017 %9 Protocol %J JMIR Res Protoc %G English %X Background: Evidence suggests that young people want to be active participants in their care and involved in decisions about their treatment. However, there is a lack of digital shared decision-making tools available to support young people in child and adolescent mental health services (CAMHS). Objective: The primary aim of this paper is to present the protocol of a feasibility trial for Power Up, a mobile phone app to empower young people in CAMHS to make their voices heard and participate in decisions around their care. Methods: In the development phase, 30 young people, parents, and clinicians will take part in interviews and focus groups to elicit opinions on an early version of the app. In the feasibility testing phase, 60 young people from across 7 to 10 London CAMHS sites will take part in a trial looking at the feasibility and acceptability of measuring the impact of Power Up on shared decision making. Results: Data collection for the development phase ended in December 2016. Data collection for the feasibility testing phase will end in December 2017. Conclusions: Findings will inform the planning of a cluster controlled trial and contribute to the development and implementation of a shared decision-making app to be integrated into CAMHS. Trial Registration: ISRCTN77194423; http://www.isrctn.com/ISRCTN77194423 (Archived by WebCite at http://www.webcitation.org/6td6MINP0). ClinicalTrials.gov NCT02987608; https://clinicaltrials.gov/ct2/show/NCT02987608 (Archived by WebCite at http://www.webcitation.org/6td6PNBZM) %M 29084708 %R 10.2196/resprot.7694 %U http://www.researchprotocols.org/2017/10/e206/ %U https://doi.org/10.2196/resprot.7694 %U http://www.ncbi.nlm.nih.gov/pubmed/29084708 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 10 %P e342 %T Recommending Education Materials for Diabetic Questions Using Information Retrieval Approaches %A Zeng,Yuqun %A Liu,Xusheng %A Wang,Yanshan %A Shen,Feichen %A Liu,Sijia %A Rastegar-Mojarad,Majid %A Wang,Liwei %A Liu,Hongfang %+ Department of Health Sciences Research, Mayo College of Medicine, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, United States, 1 5072930057, Liu.Hongfang@mayo.edu %K education materials %K patients %K questions %K recommendation %K information retrieval %D 2017 %7 16.10.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Self-management is crucial to diabetes care and providing expert-vetted content for answering patients’ questions is crucial in facilitating patient self-management. Objective: The aim is to investigate the use of information retrieval techniques in recommending patient education materials for diabetic questions of patients. Methods: We compared two retrieval algorithms, one based on Latent Dirichlet Allocation topic modeling (topic modeling-based model) and one based on semantic group (semantic group-based model), with the baseline retrieval models, vector space model (VSM), in recommending diabetic patient education materials to diabetic questions posted on the TuDiabetes forum. The evaluation was based on a gold standard dataset consisting of 50 randomly selected diabetic questions where the relevancy of diabetic education materials to the questions was manually assigned by two experts. The performance was assessed using precision of top-ranked documents. Results: We retrieved 7510 diabetic questions on the forum and 144 diabetic patient educational materials from the patient education database at Mayo Clinic. The mapping rate of words in each corpus mapped to the Unified Medical Language System (UMLS) was significantly different (P<.001). The topic modeling-based model outperformed the other retrieval algorithms. For example, for the top-retrieved document, the precision of the topic modeling-based, semantic group-based, and VSM models was 67.0%, 62.8%, and 54.3%, respectively. Conclusions: This study demonstrated that topic modeling can mitigate the vocabulary difference and it achieved the best performance in recommending education materials for answering patients’ questions. One direction for future work is to assess the generalizability of our findings and to extend our study to other disease areas, other patient education material resources, and online forums. %M 29038097 %R 10.2196/jmir.7754 %U http://www.jmir.org/2017/10/e342/ %U https://doi.org/10.2196/jmir.7754 %U http://www.ncbi.nlm.nih.gov/pubmed/29038097 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 5 %N 4 %P e36 %T Computerized Decision Aids for Shared Decision Making in Serious Illness: Systematic Review %A Staszewska,Anna %A Zaki,Pearl %A Lee,Joon %+ Health Data Science Lab, School of Public Health and Health Systems, University of Waterloo, 200 University Ave W, Waterloo, ON, N2L 3G1, Canada, 1 5198884567 ext 31567, joon.lee@uwaterloo.ca %K decision making %K decision aids %K evidence-based medicine %K user-computer interface %K chronic disease %D 2017 %7 06.10.2017 %9 Original Paper %J JMIR Med Inform %G English %X Background: Shared decision making (SDM) is important in achieving patient-centered care. SDM tools such as decision aids are intended to inform the patient. When used to assist in decision making between treatments, decision aids have been shown to reduce decisional conflict, increase ease of decision making, and increase modification of previous decisions. Objective: The purpose of this systematic review is to assess the impact of computerized decision aids on patient-centered outcomes related to SDM for seriously ill patients. Methods: PubMed and Scopus databases were searched to identify randomized controlled trials (RCTs) that assessed the impact of computerized decision aids on patient-centered outcomes and SDM in serious illness. Six RCTs were identified and data were extracted on study population, design, and results. Risk of bias was assessed by a modified Cochrane Risk of Bias Tool for Quality Assessment of Randomized Controlled Trials. Results: Six RCTs tested decision tools in varying serious illnesses. Three studies compared different computerized decision aids against each other and a control. All but one study demonstrated improvement in at least one patient-centered outcome. Computerized decision tools may reduce unnecessary treatment in patients with low disease severity in comparison with informational pamphlets. Additionally, electronic health record (EHR) portals may provide the opportunity to manage care from the home for individuals affected by illness. The quality of decision aids is of great importance. Furthermore, satisfaction with the use of tools is associated with increased patient satisfaction and reduced decisional conflict. Finally, patients may benefit from computerized decision tools without the need for increased physician involvement. Conclusions: Most computerized decision aids improved at least one patient-centered outcome. All RCTs identified were at a High Risk of Bias or Unclear Risk of Bias. Effort should be made to improve the quality of RCTs testing SDM aids in serious illness. %M 28986341 %R 10.2196/medinform.6405 %U https://medinform.jmir.org/2017/4/e36/ %U https://doi.org/10.2196/medinform.6405 %U http://www.ncbi.nlm.nih.gov/pubmed/28986341 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 6 %N 2 %P e15 %T Quality of Patient Information Websites About Congenital Heart Defects: Mixed-Methods Study of Perspectives Among Individuals With Experience of a Prenatal Diagnosis %A Carlsson,Tommy %A Melander Marttala,Ulla %A Wadensten,Barbro %A Bergman,Gunnar %A Axelsson,Ove %A Mattsson,Elisabet %+ Department of Women's and Children's Health, Uppsala University, Husargatan 3, D11:1, Box 564, Uppsala, SE-75237, Sweden, 46 736143454, tommy.carlsson@kbh.uu.se %K congenital heart defects %K consumer health information %K information literacy %K Internet %K popular works %K pregnancy %K prenatal diagnosis %D 2017 %7 12.09.2017 %9 Original Paper %J Interact J Med Res %G English %X Background: When a heart defect is prenatally diagnosed in the fetus, expectant parents experience a great need for information about various topics. After the diagnosis, the Web is used for supplemental information, and the scarcity of research calls attention to the need to explore patient information websites from the perspectives of the intended consumers. Objective: The overarching aim of this study was to explore the quality of Swedish patient information websites about congenital heart defects, from the perspectives of individuals with experience of a prenatal diagnosis of congenital heart defect in the fetus. Methods: This was a mixed-methods study of websites identified through systematic searches in the two most used Web-based search engines. Of the total 80 screened hits, 10 hits led to patient information websites about congenital heart defects. A quality assessment tool inspired by a previous study was used to evaluate each website’s appearance, details, relevance, suitability, information about treatment choices, and overall quality. Answers were given on a 5-point Likert scale, ranging from 1, representing the lowest score, to 5, representing the highest score. Each website was assessed individually by persons with experience of continued (n=4) and terminated (n=5) pregnancy following a prenatal diagnosis. Assessments were analyzed with Kendall’s coefficient of concordance W, Mann-Whitney U test, Friedman’s test, and a Wilcoxon-Nemenyi-McDonald-Thompson test. In addition, each assessor submitted written responses to open-ended questions in the quality assessment tool, and two joint focus group discussions were conducted with each group of assessors. The qualitative data were analyzed with inductive manifest content analysis. Results: Assessments represented a low score (median=2.0) for treatment choices and moderate scores (median=3.0) for appearance, details, relevance, suitability, and overall quality. No website had a median of the highest achievable score for any of the questions in the quality assessment tool. Medians of the lowest achievable score were found in questions about treatment choices (n=4 websites), details (n=2 websites), suitability (n=1 website), and overall quality (n=1 website). Websites had significantly different scores for appearance (P=.01), details (P<.001), relevance (P<.001), suitability (P<.001), treatment choices (P=.04), and overall quality (P<.001). The content analysis of the qualitative data generated six categories: (1) advertisements, (2) comprehensiveness, (3) design, (4) illustrations and pictures, (5) language, and (6) trustworthiness. Various issues with the included websites were highlighted, including the use of inappropriate advertisements, biased information, poor illustrations, complex language, and poor trustworthiness. Conclusions: From the perspectives of the intended consumers, patient information websites about congenital heart defects are, to a large extent, inadequate tools for supplemental information following a prenatal diagnosis. Health professionals should initiate discussions with patients about their intentions to use the Web, inform them about the varied quality in the Web-based landscape, and offer recommendations for appropriate Web-based sources. %M 28899846 %R 10.2196/ijmr.7844 %U http://www.i-jmr.org/2017/2/e15/ %U https://doi.org/10.2196/ijmr.7844 %U http://www.ncbi.nlm.nih.gov/pubmed/28899846 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 8 %P e298 %T A Web-Based and Print-Based Computer-Tailored Physical Activity Intervention for Prostate and Colorectal Cancer Survivors: A Comparison of User Characteristics and Intervention Use %A Golsteijn,Rianne Henrica Johanna %A Bolman,Catherine %A Peels,Denise Astrid %A Volders,Esmee %A de Vries,Hein %A Lechner,Lilian %+ Department of Psychology and Educational Sciences, Open University of the Netherlands, PO Box 2960, Heerlen, 6401 DL, Netherlands, 31 455762539, rianne.golsteijn@ou.nl %K eHealth %K web-based intervention %K print-delivered intervention %K computer tailoring %K intervention usage %K physical activity %K prostate cancer %K colorectal cancer %K cancer survivorship %D 2017 %7 23.08.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Physical activity (PA) is beneficial in improving negative physical and psychological effects of cancer. The rapidly increasing number of cancer survivors, resulting from aging and improved cancer care, emphasizes the importance to develop and provide low cost, easy accessible PA programs. Such programs could be provided through the Internet, but that could result in the exclusion of cancer survivors not familiar with the Internet. Therefore, we developed a computer-tailored PA intervention for prostate and colorectal cancer survivors in which both Web-based and print materials are provided, and participants can choose their own preferred delivery mode. Objective: The aim of this study was to assess participants’ characteristics related to delivery mode and use of intervention materials. Methods: We studied characteristics of participants using Web-based and printed intervention materials in a randomized controlled trial (RCT). Prostate and colorectal cancer survivors recruited from hospitals were randomized to OncoActive (computer-tailored PA intervention) or a usual-care control group. OncoActive participants received both Web-based and printed materials. Participants were classified into initial print- or Web-based participants based on their preferred mode of completion of the first questionnaire, which was needed for the computer-tailored PA advice. Intervention material use during the remainder of the intervention was compared for initial print- or Web-based participants. Additionally, participants were classified into those using only print materials and those using Web-based materials. Differences in participant characteristics and intervention material use were studied through analysis of variance (ANOVAs), chi-square tests, and logistic regressions. Results: The majority of the participants in the intervention group were classified as initial Web-based participants (170/249, 68.3%), and 84.9% (191/249) used Web-based intervention materials. Dropout was low (15/249, 6.0%) and differed between initial Web-based (4/170, 2.4%) and print-based (11/79, 14%) participants. Participants were less likely to start Web-based with higher age (odds ratio [OR]=0.93), longer time since last treatment (OR=0.87), and higher fatigue (OR=0.96), and more likely with higher education (OR=4.08) and having completed treatments (OR=5.58). Those who were older (OR=0.93) and post treatment for a longer time (OR=0.86) were less likely to use Web-based intervention materials. Initial print-based participants predominantly used print-based materials, whereas initial Web-based participants used both print- and Web-based materials. Conclusions: To our knowledge, this is one of the first studies that assessed participant characteristics related to delivery mode in an intervention in which participants had a free choice of delivery modes. Use of print-based materials among the initial Web-based participants was substantial, indicating the importance of print-based materials. According to our findings, it may be important to offer Web- and print-based materials alongside each other. Providing Web-based materials only may exclude older, less educated, more fatigued, or currently treated participants; these groups are especially more vulnerable and could benefit most from PA interventions. %M 28835353 %R 10.2196/jmir.7838 %U http://www.jmir.org/2017/8/e298/ %U https://doi.org/10.2196/jmir.7838 %U http://www.ncbi.nlm.nih.gov/pubmed/28835353 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 8 %P e198 %T Parent-Mediated Intervention Training Delivered Remotely for Children With Autism Spectrum Disorder Living Outside of Urban Areas: Systematic Review %A Parsons,Dave %A Cordier,Reinie %A Vaz,Sharmila %A Lee,Hoe C %+ School of Occupational Therapy and Social Work, Curtin University, Building 401, Kent St, Bentley, Perth, 6102, Australia, 61 (08) 92663790, dave.parsons@curtin.edu.au %K Autistic disorder %K Internet %K parents %K rural health services %K telemedicine %D 2017 %7 14.08.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Parent training programs for families living outside of urban areas can be used to improve the social behavior and communication skills in children with autism spectrum disorder (ASD). However, no review has been conducted to investigate these programs. Objective: The aim of this study was to (1) systematically review the existing evidence presented by studies on parent-mediated intervention training, delivered remotely for parents having children with ASD and living outside of urban areas; (2) provide an overview of current parent training interventions used with this population; (3) and provide an overview of the method of delivery of the parent training interventions used with this population. Methods: Guided by the preferred reporting items for systematic reviews and meta-analyses (PRISMA) statement, we conducted a comprehensive review across 5 electronic databases (CINAHL, Embase, ERIC, PsycINFO, and Pubmed) on July 4, 2016, searching for studies investigating parent-mediated intervention training for families living outside of urban centers who have a child diagnosed with ASD. Two independent researchers reviewed the articles for inclusion, and assessment of methodological quality was based on the Kmet appraisal checklist. Results: Seven studies met the eligibility criteria, including 2 prepost cohort studies, 3 multiple baseline studies, and 2 randomized controlled trials (RCTs). Interventions included mostly self-guided websites: with and without therapist assistance (n=6), with training videos, written training manuals, and videoconferencing. Post intervention, studies reported significant improvements (P<.05) in parent knowledge (n=4), parent intervention fidelity (n=6), and improvements in children’s social behavior and communication skills (n=3). A high risk of bias existed within all of the studies because of a range of factors including small sample sizes, limited use of standardized outcome measures, and a lack of control groups to negate confounding factors. Conclusions: There is preliminary evidence that parent-mediated intervention training delivered remotely may improve parent knowledge, increase parent intervention fidelity, and improve the social behavior and communication skills for children with ASD. A low number of RCTs, difficulty in defining the locality of the population, and a paucity of standardized measures limit the generalization of the findings to the target population. Future studies should investigate the appropriateness and feasibility of the interventions, include RCTs to control for bias, and utilize standard outcome measures. %M 28807892 %R 10.2196/jmir.6651 %U http://www.jmir.org/2017/8/e198/ %U https://doi.org/10.2196/jmir.6651 %U http://www.ncbi.nlm.nih.gov/pubmed/28807892 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 7 %P e260 %T Readability of Wikipedia Pages on Autoimmune Disorders: Systematic Quantitative Assessment %A Watad,Abdulla %A Bragazzi,Nicola Luigi %A Brigo,Francesco %A Sharif,Kassem %A Amital,Howard %A McGonagle,Dennis %A Shoenfeld,Yehuda %A Adawi,Mohammad %+ Department of Medicine B, Sheba Medical Centre, Tel-Hashomer, 52621, Tel Aviv,, Israel, 972 3 530 2435, watad.abdulla@gmail.com %K autoimmune diseases %K eHealth %K telemedicine %K readability %K Wikipedia %D 2017 %7 18.07.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: In the era of new information and communication technologies, the Internet is being increasingly accessed for health-related information. Indeed, recently published patient surveys of people with autoimmune disorders confirmed that the Internet was reported as one of the most important health information sources. Wikipedia, a free online encyclopedia launched in 2001, is generally one of the most visited websites worldwide and is often consulted for health-related information. Objective: The main objective of this investigation was to quantitatively assess whether the Wikipedia pages related to autoimmune disorders can be easily accessed by patients and their families, in terms of readability. Methods: We obtained and downloaded a list of autoimmune disorders from the American Autoimmune Related Diseases Association (AARDA) website. We analyzed Wikipedia articles for their overall level of readability with 6 different quantitative readability scales: (1) the Flesch Reading Ease, (2) the Gunning Fog Index, (3) the Coleman-Liau Index, (4) the Flesch-Kincaid Grade Level, (5) the Automated Readability Index (ARI), and (6) the Simple Measure of Gobbledygook (SMOG). Further, we investigated the correlation between readability and clinical, pathological, and epidemiological parameters. Moreover, each Wikipedia analysis was assessed according to its content, breaking down the readability indices by main topic of each part (namely, pathogenesis, treatment, diagnosis, and prognosis plus a section containing paragraphs not falling into any of the previous categories). Results: We retrieved 134 diseases from the AARDA website. The Flesch Reading Ease yielded a mean score of 24.34 (SD 10.73), indicating that the sites were very difficult to read and best understood by university graduates, while mean Gunning Fog Index and ARI scores were 16.87 (SD 2.03) and 14.06 (SD 2.12), respectively. The Coleman-Liau Index and the Flesch-Kincaid Grade Level yielded mean scores of 14.48 (SD 1.57) and 14.86 (1.95), respectively, while the mean SMOG score was 15.38 (SD 1.37). All the readability indices confirmed that the sites were suitable for a university graduate reading level. We found no correlation between readability and clinical, pathological, and epidemiological parameters. Differences among the different sections of the Wikipedia pages were statistically significant. Conclusions: Wikipedia pages related to autoimmune disorders are characterized by a low level of readability. The onus is, therefore, on physicians and health authorities to improve the health literacy skills of patients and their families and to create, together with patients themselves, disease-specific readable sites, disseminating highly accessible health-related online information, in terms of both clarity and conciseness. %M 28720555 %R 10.2196/jmir.8225 %U http://www.jmir.org/2017/7/e260/ %U https://doi.org/10.2196/jmir.8225 %U http://www.ncbi.nlm.nih.gov/pubmed/28720555 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 7 %P e225 %T Direct-to-Consumer Promotion of Prescription Drugs on Mobile Devices: Content Analysis %A Aikin,Kathryn J %A Sullivan,Helen W %A Dolina,Suzanne %A Lynch,Molly %A Squiers,Linda B %+ Office of Prescription Drug Promotion, Center for Drug Evaluation, US Food and Drug Administration, 10903 New Hampshire Avenue, Silver Spring, MD, 20993, United States, 1 301 796 1200, kathryn.aikin@fda.hhs.gov %K direct-to-consumer promotion %K direct-to-consumer advertising %K mobile devices %K prescription drugs %D 2017 %7 04.07.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: US Food and Drug Administration (FDA) regulations state that any prescription drug promotion that presents drug benefits to consumers must also disclose certain information about the drug’s risks in a similar manner. Nearly three-quarters of all US mobile phone subscribers use a smartphone, and over half report receiving mobile advertisements on their device. Objective: The objective of this project was to investigate how prescription drugs are being promoted to consumers using mobile technologies. We were particularly interested in the presentation of drug benefits and risks, with regard to presence, placement, and prominence. Methods: We analyzed a sample of 51 mobile promotional communications and their associated linked landing pages. We assessed the content and format of the mobile communications and landing pages with regard to presentation of drug benefits and risks. Results: Of the 51 mobile communications we coded, 41% (21/51) were product claim communications (includes the drug name, benefits, and risks), 22% (11/51) were reminder communications (includes drug name only), and 37% (19/51) were help-seeking communications (includes information about the medical condition but not the drug name). Some of the product claim communications (5/21, 24%) required scrolling to see all the benefit information; in contrast, 95% (20/21) required scrolling to see all the risk information. Of the 19 product claim communications that presented both benefits and risks, 95% (18/19) presented benefits before risks and 47% (9/19) used a bigger font for benefits than for risks. Most mobile communications (35/51, 69%) linked to branded drug websites with both benefits and risks, 25% (13/51) linked to a landing page with benefits but no visible risks, and 6% (3/51) linked to a landing page with risks but no visible benefits. Few landing pages (4/51, 8%) required scrolling to see all the benefit information; in contrast, 51% (26/51) required scrolling to see all the risk information. Of the 35 landing pages with both benefit and risk information, 71% (25/35) presented benefits before risks and 51% (18/35) used a bigger font for benefits than for risks. Conclusions: These results indicate that, while risks and benefits are both represented in mobile communications and their associated landing pages, they are not equally prominent and accessible. This has implications for compliance with FDA fair balance regulations. %M 28676469 %R 10.2196/jmir.7306 %U http://www.jmir.org/2017/7/e225/ %U https://doi.org/10.2196/jmir.7306 %U http://www.ncbi.nlm.nih.gov/pubmed/28676469 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 2 %N 1 %P e13 %T Machine or Human? Evaluating the Quality of a Language Translation Mobile App for Diabetes Education Material %A Chen,Xuewei %A Acosta,Sandra %A Barry,Adam E %+ Transdisciplinary Center for Health Equity Research, Department of Health and Kinesiology, Texas A&M University, Blocker 311B, 4243 TAMU, College Station, TX, 77843, United States, 1 979 676 0758, xueweichen@tamu.edu %K health literacy %K health education %K health communication %K language translation %K diabetes %K machine translation %K mobile translation app %K human interpreter %K translator %D 2017 %7 29.06.2017 %9 Original Paper %J JMIR Diabetes %G English %X Background: Diabetes is a major health crisis for Hispanics and Asian Americans. Moreover, Spanish and Chinese speakers are more likely to have limited English proficiency in the United States. One potential tool for facilitating language communication between diabetes patients and health care providers is technology, specifically mobile phones. Objective: Previous studies have assessed machine translation quality using only writing inputs. To bridge such a research gap, we conducted a pilot study to evaluate the quality of a mobile language translation app (iTranslate) with a voice recognition feature for translating diabetes patient education material. Methods: The pamphlet, “You are the heart of your family…take care of it,” is a health education sheet for diabetes patients that outlines three recommended questions for patients to ask their clinicians. Two professional translators translated the original English sentences into Spanish and Chinese. We recruited six certified medical translators (three Spanish and three Chinese) to conduct blinded evaluations of the following versions: (1) sentences interpreted by iTranslate, and (2) sentences interpreted by the professional human translators. Evaluators rated the sentences (ranging from 1-5) on four scales: Fluency, Adequacy, Meaning, and Severity. We performed descriptive analyses to examine the differences between these two versions. Results: Cronbach alpha values exhibited high degrees of agreement on the rating outcomes of both evaluator groups: .920 for the Spanish raters and .971 for the Chinese raters. The readability scores generated using MS Word’s Flesch-Kincaid Grade Level for these sentences were 0.0, 1.0, and 7.1. We found iTranslate generally provided translation accuracy comparable to human translators on simple sentences. However, iTranslate made more errors when translating difficult sentences. Conclusions: Although the evidence from our study supports iTranslate’s potential for supplementing professional human translators, further evidence is needed. For this reason, mobile language translation apps should be used with caution. %M 30291084 %R 10.2196/diabetes.7446 %U http://diabetes.jmir.org/2017/1/e13/ %U https://doi.org/10.2196/diabetes.7446 %U http://www.ncbi.nlm.nih.gov/pubmed/30291084 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 6 %N 1 %P e7 %T Dupuytren Disease: Is There Enough Comprehensive Patient Information on the Internet? %A Zuk,Grzegorz %A Reinisch,Katharina B %A Raptis,Dimitri A %A Fertsch,Sonia %A Guggenheim,Merlin %A Palma,Adrian F %+ Hospital of Wetzikon, Department of Surgery, Spitalstrasse 66, Wetzikon, 8620, Switzerland, 41 449341111, mail@adrianpalma.com %K congenital hand deformity %K Internet %K patient education %D 2017 %7 22.06.2017 %9 Original Paper %J Interact J Med Res %G English %X Background: Dupuytren disease is a chronic nonmalign fibroproliferative disorder that causes finger contractures via proliferation of new tissue under the glabrous skin of the hand, resulting in multiple functional limitations for the patient. As many surgical therapy options exist, patients suffering from this condition actively search for information in their environment before consulting a health professional. Objective: As little is known about the quality of Web-based patient information, the aim of this study was to conduct its systematic evaluation using a validated tool. Methods: A total of 118 websites were included, and qualitative and quantitative assessment was performed using the modified Ensuring Quality Information for Patients (EQIP) tool. This standardized and reproducible tool consists of 36 items to assess available information in three categories: contents, identification, and structure data. Scientific data with restricted access, duplicates, and irrelevant websites were not included. Results: Only 32 websites addressed more than 19 items, and the scores did not significantly differ among the website developers. The median number of items from the EQIP tool was 16, with the top websites addressing 28 out of 36 items. The quality of the newly developed websites did not increase with passing time. Conclusions: This study revealed several shortcomings in the quality of Web-based information available for patients suffering from Dupuytren disease. In the world of continuously growing and instantly available Web-based information, it is the health providers’ negligence of the last two decades that there are very few good quality, informative, and educative websites that could be recommended to patients. %M 28642214 %R 10.2196/ijmr.7822 %U http://www.i-jmr.org/2017/1/e7/ %U https://doi.org/10.2196/ijmr.7822 %U http://www.ncbi.nlm.nih.gov/pubmed/28642214 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 6 %P e212 %T MyGeneFriends: A Social Network Linking Genes, Genetic Diseases, and Researchers %A Allot,Alexis %A Chennen,Kirsley %A Nevers,Yannis %A Poidevin,Laetitia %A Kress,Arnaud %A Ripp,Raymond %A Thompson,Julie Dawn %A Poch,Olivier %A Lecompte,Odile %+ ICUBE UMR 7357, Complex Systems and Translational Bioinformatics, Université de Strasbourg - CNRS - FMTS, CSTB – ICUBE UMR7357, 4 rue de Kirschleger, Strasbourg, 67085, France, 33 3 68 85 32 96, odile.lecompte@unistra.fr %K health care %K social media %K genetic variation %K hereditary disease %D 2017 %7 16.06.2017 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 28623182 %R 10.2196/jmir.6676 %U http://www.jmir.org/2017/6/e212/ %U https://doi.org/10.2196/jmir.6676 %U http://www.ncbi.nlm.nih.gov/pubmed/28623182 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 5 %N 5 %P e73 %T Perceptions of Patient Engagement Applications During Pregnancy: A Qualitative Assessment of the Patient’s Perspective %A Goetz,Maren %A Müller,Mitho %A Matthies,Lina Maria %A Hansen,Jenny %A Doster,Anne %A Szabo,Akos %A Pauluschke-Fröhlich,Jan %A Abele,Harald %A Sohn,Christof %A Wallwiener,Markus %A Wallwiener,Stephanie %+ Department of Obstetrics and Gynecology, University of Heidelberg, Im Neuenheimer Feld 440, Heidelberg, 69121, Germany, 49 6221 5637551, Stephanie.wallwiener@googlemail.com %K pregnancy %K telemedicine %K mobile applications %K information procurement %K patient participation %K qualitative research %D 2017 %7 26.05.2017 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X 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. %M 28550005 %R 10.2196/mhealth.7040 %U http://mhealth.jmir.org/2017/5/e73/ %U https://doi.org/10.2196/mhealth.7040 %U http://www.ncbi.nlm.nih.gov/pubmed/28550005 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 5 %P e174 %T Patient-Centered Decision Support: Formative Usability Evaluation of Integrated Clinical Decision Support With a Patient Decision Aid for Minor Head Injury in the Emergency Department %A Melnick,Edward R %A Hess,Erik P %A Guo,George %A Breslin,Maggie %A Lopez,Kevin %A Pavlo,Anthony J %A Abujarad,Fuad %A Powsner,Seth M %A Post,Lori A %+ Department of Emergency Medicine, Yale School of Medicine, 464 Congress Ave, Suite 260, New Haven, CT,, United States, 1 203 737 6454, edward.melnick@yale.edu %K clinical decision support %K decision aids %K head injury, minor %K medical informatics %K spiral computed tomography %K health services overuse %K patient-centered outcomes research %D 2017 %7 19.05.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: The Canadian Computed Tomography (CT) Head Rule, a clinical decision rule designed to safely reduce imaging in minor head injury, has been rigorously validated and implemented, and yet expected decreases in CT were unsuccessful. Recent work has identified empathic care as a key component in decreasing CT overuse. Health information technology can hinder the clinician-patient relationship. Patient-centered decision tools to support the clinician-patient relationship are needed to promote evidence-based decisions. Objective: Our objective is to formatively evaluate an electronic tool that not only helps clinicians at the bedside to determine the need for CT use based on the Canadian CT Head Rule but also promotes evidence-based conversations between patients and clinicians regarding patient-specific risk and patients’ specific concerns. Methods: User-centered design with practice-based and participatory decision aid development was used to design, develop, and evaluate patient-centered decision support regarding CT use in minor head injury in the emergency department. User experience and user interface (UX/UI) development involved successive iterations with incremental refinement in 4 phases: (1) initial prototype development, (2) usability assessment, (3) field testing, and (4) beta testing. This qualitative approach involved input from patients, emergency care clinicians, health services researchers, designers, and clinical informaticists at every stage. Results: The Concussion or Brain Bleed app is the product of 16 successive iterative revisions in accordance with UX/UI industry design standards. This useful and usable final product integrates clinical decision support with a patient decision aid. It promotes shared use by emergency clinicians and patients at the point of care within the emergency department context. This tablet computer app facilitates evidence-based conversations regarding CT in minor head injury. It is adaptable to individual clinician practice styles. The resultant tool includes a patient injury evaluator based on the Canadian CT Head Rule and provides patient specific risks using pictographs with natural frequencies and cues for discussion about patient concerns. Conclusions: This tool was designed to align evidence-based practices about CT in minor head injury patients. It establishes trust, empowers active participation, and addresses patient concerns and uncertainty about their condition. We hypothesize that, when implemented, the Concussion or Brain Bleed app will support—not hinder—the clinician-patient relationship, safely reduce CT use, and improve the patient experience of care. %M 28526667 %R 10.2196/jmir.7846 %U http://www.jmir.org/2017/5/e174/ %U https://doi.org/10.2196/jmir.7846 %U http://www.ncbi.nlm.nih.gov/pubmed/28526667 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 6 %N 1 %P e6 %T Quality of Social Media and Web-Based Information Regarding Inappropriate Nuclear Cardiac Stress Testing and the Choosing Wisely Campaign: A Cross-Sectional Study %A Winchester,David E %A Baxter,Diana %A Markham,Merry J %A Beyth,Rebecca J %+ Division of Cardiovascular Medicine, Department of Medicine, University of Florida, 1600 SW Archer Rd, PO Box 100288, Gainesville, FL, 32610-0288, United States, 1 352 273 9076, dwinches@ufl.edu %K myocardial perfusion imaging %K health services research %K Internet %K unnecessary procedures %D 2017 %7 04.05.2017 %9 Short Paper %J Interact J Med Res %G English %X Background: The World Wide Web and social media provide the public with access to medical information unlike any other time in human history. However, the quality of content related to cardiac stress testing is not well understood. Objective: The aim of our study was to evaluate the quality of content on the Internet relating to the use of cardiac nuclear stress testing and the Choosing Wisely campaign. Methods: We searched the World Wide Web, Google Video (including YouTube), and Twitter for information relating to these two topics. Searches were performed using English language terms from a computer in the United States not logged into any personal user accounts. Search results were reviewed for discussion of specific topics including radiation risk, accuracy of testing, alternative testing options, and discouragement of inappropriate test use. Results: We evaluated a total of 348 items of content from our searches. Relevant search results for Choosing Wisely were fewer than for other search terms (45 vs 303). We did not find any content which encouraged inappropriate testing (ie, screening in low risk individuals or testing prior to low risk operations). Content related to Choosing Wisely was more likely to discourage inappropriate testing than search results for other terms (29/45, 64% vs 12/303, 4.0%, odds ratio 43.95, 95% CI 17.6-112.2, P<.001). Conclusions: The Internet content on nuclear stress tests consistently discouraged inappropriate testing. The Choosing Wisely content was more likely to discourage inappropriate testing, less relevant content was available. Generating authoritative content on the Internet relating to judicious use of medical interventions may be an important role for the Choosing Wisely campaign. %M 28473305 %R 10.2196/ijmr.7210 %U http://www.i-jmr.org/2017/1/e6/ %U https://doi.org/10.2196/ijmr.7210 %U http://www.ncbi.nlm.nih.gov/pubmed/28473305 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 3 %N 1 %P e7 %T Simulated Conversations With Virtual Humans to Improve Patient-Provider Communication and Reduce Unnecessary Prescriptions for Antibiotics: A Repeated Measure Pilot Study %A Schoenthaler,Antoinette %A Albright,Glenn %A Hibbard,Judith %A Goldman,Ron %+ Center for Healthful Behavior Change, Department of Population Health, NYU School of Medicine, 227 East 30th street, New York, NY, 10016, United States, 1 212 263 4205, antoinette.schoenthaler@nyumc.org %K simulation training %K health communication %K patient activation %K motivational interviewing %K decision making %D 2017 %7 19.04.2017 %9 Original Paper %J JMIR Med Educ %G English %X Background: Despite clear evidence that antibiotics do not cure viral infections, the problem of unnecessary prescribing of antibiotics in ambulatory care persists, and in some cases, prescribing patterns have increased. The overuse of antibiotics for treating viral infections has created numerous economic and clinical consequences including increased medical costs due to unnecessary hospitalizations, antibiotic resistance, disruption of gut bacteria, and obesity. Recent research has underscored the importance of collaborative patient-provider communication as a means to reduce the high rates of unnecessary prescriptions for antibiotics. However, most patients and providers do not feel prepared to engage in such challenging conversations. Objectives: The aim of this pilot study was to assess the ability of a brief 15-min simulated role-play conversation with virtual humans to serve as a preliminary step to help health care providers and patients practice, and learn how to engage in effective conversations about antibiotics overuse. Methods: A total of 69 participants (35 providers and 34 patients) completed the simulation once in one sitting. A pre-post repeated measures design was used to assess changes in patients’ and providers’ self-reported communication behaviors, activation, and preparedness, intention, and confidence to effectively communicate in the patient-provider encounter. Changes in patients’ knowledge and beliefs regarding antibiotic use were also evaluated. Results: Patients experienced a short-term positive improvement in beliefs about appropriate antibiotic use for infection (F1,30=14.10, P=.001). Knowledge scores regarding the correct uses of antibiotics improved immediately postsimulation, but decreased at the 1-month follow-up (F1,30=31.16, P<.001). There was no change in patient activation and shared decision-making (SDM) scores in the total sample of patients (P>.10) Patients with lower levels of activation exhibited positive, short-term benefits in increased intent and confidence to discuss their needs and ask questions in the clinic visit, positive attitudes regarding participation in SDM with their provider, and accurate beliefs about the use of antibiotics (P<.10). The results also suggest small immediate gains in providers’ attitudes about SDM (mean change 0.20; F1,33= 8.03, P=.01). Conclusions: This pilot study provided preliminary evidence on the efficacy of the use of simulated conversations with virtual humans as a tool to improve patient-provider communication (ie, through increasing patient confidence to actively participate in the visit and physician attitudes about SDM) for engaging in conversations about antibiotic use. Future research should explore if repeated opportunities to use the 15-min simulation as well as providing users with several different conversations to practice with would result in sustained improvements in antibiotics beliefs and knowledge and communication behaviors over time. The results of this pilot study offered several opportunities to improve on the simulation in order to bolster communication skills and knowledge retention. %M 28428160 %R 10.2196/mededu.6305 %U http://mededu.jmir.org/2017/1/e7/ %U https://doi.org/10.2196/mededu.6305 %U http://www.ncbi.nlm.nih.gov/pubmed/28428160 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 5 %N 4 %P e42 %T Development and Testing of the MyHealthyPregnancy App: A Behavioral Decision Research-Based Tool for Assessing and Communicating Pregnancy Risk %A Krishnamurti,Tamar %A Davis,Alexander L %A Wong-Parodi,Gabrielle %A Fischhoff,Baruch %A Sadovsky,Yoel %A Simhan,Hyagriv N %+ Department of Engineering and Public Policy, Carnegie Mellon University, 5000 Forbes Avenue, Pittsburgh, PA, 15213, United States, 1 (412) 268 2670, tamar@cmu.edu %K mhealth %K pregnancy %K premature birth %K decision making %D 2017 %7 10.04.2017 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Despite significant advances in medical interventions and health care delivery, preterm births in the United States are on the rise. Existing research has identified important, seemingly simple precautions that could significantly reduce preterm birth risk. However, it has proven difficult to communicate even these simple recommendations to women in need of them. Our objective was to draw on methods from behavioral decision research to develop a personalized smartphone app-based medical communication tool to assess and communicate pregnancy risks related to preterm birth. Objective: A longitudinal, prospective pilot study was designed to develop an engaging, usable smartphone app that communicates personalized pregnancy risk and gathers risk data, with the goal of decreasing preterm birth rates in a typically hard-to-engage patient population. Methods: We used semistructured interviews and user testing to develop a smartphone app based on an approach founded in behavioral decision research. For usability evaluation, 16 participants were recruited from the outpatient clinic at a major academic hospital specializing in high-risk pregnancies and provided a smartphone with the preloaded app and a digital weight scale. Through the app, participants were queried daily to assess behavioral risks, mood, and symptomology associated with preterm birth risk. Participants also completed monthly phone interviews to report technical problems and their views on the app’s usefulness. Results: App use was higher among participants at higher risk, as reflected in reporting poorer daily moods (Odds ratio, OR 1.20, 95% CI 0.99-1.47, P=.08), being more likely to smoke (OR 4.00, 95% CI 0.93-16.9, P=.06), being earlier in their pregnancy (OR 1.07, 95% CI 1.02-1.12, P=.005), and having a lower body mass index (OR 1.07, 95% CI 1.00-1.15, P=.05). Participant-reported intention to breastfeed increased from baseline to the end of the trial, t15=−2.76, P=.01. Participants’ attendance at prenatal appointments was 84% compared with the clinic norm of 50%, indicating a conservatively estimated cost savings of ~US $450/patient over 3 months. Conclusions: Our app is an engaging method for assessing and communicating risk during pregnancy in a typically hard-to-reach population, providing accessible and personalized distant obstetrical care, designed to target preterm birth risk, specifically. %M 28396302 %R 10.2196/mhealth.7036 %U http://mhealth.jmir.org/2017/4/e42/ %U https://doi.org/10.2196/mhealth.7036 %U http://www.ncbi.nlm.nih.gov/pubmed/28396302 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 3 %P e60 %T Website Use and Effects of Online Information About Tobacco Additives Among the Dutch General Population: A Randomized Controlled Trial %A Reinwand,Dominique A %A Crutzen,Rik %A Kienhuis,Anne S %A Talhout,Reinskje %A de Vries,Hein %+ Rehabilitative Gerontology, Faculty of Human Science, University of Cologne, Herbert Lewin Str 2, Cologne, 50931, Germany, 49 2214701529, d.reinwand@uni-koeln.de %K tobacco additives %K information dissemination %K website use %K website evaluation %K RCT %D 2017 %7 14.03.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: As a legal obligation, the Dutch government publishes online information about tobacco additives to make sure that it is publicly available. Little is known about the influence this website (”tabakinfo”) has on visitors and how the website is evaluated by them. Objective: This study assesses how visitors use the website and its effect on their knowledge, risk perception, attitude, and smoking behavior. The study will also assess how the website is evaluated by visitors using a sample of the Dutch general population, including smokers and nonsmokers. Methods: A randomized controlled trial was conducted, recruiting participants from an online panel. At baseline, participants (N=672) were asked to fill out an online questionnaire about tobacco additives. Next, participants were randomly allocated to either one of two experimental groups and invited to visit the website providing information about tobacco additives (either with or without a database containing product-specific information) or to a control group that had no access to the website. After 3 months, follow-up measurements took place. Results: At follow-up (n=492), no statistically significant differences were found for knowledge, risk perception, attitude, or smoking behavior between the intervention and control groups. Website visits were positively related to younger participants (B=–0.07, 95% CI –0.12 to –0.01; t11=–2.43, P=.02) and having a low risk perception toward tobacco additives (B=–0.32, 95% CI –0.63 to –0.02; t11=–2.07, P=.04). In comparison, having a lower education (B=–0.67, 95% CI –1.14 to –0.17; t11=–2.65, P=.01) was a significant predictor for making less use of the website. Furthermore, the website was evaluated less positively by smokers compared to nonsmokers (t324=–3.55, P<.001), and males compared to females (t324=–2.21, P=.02). Conclusions: The website did not change perceptions of tobacco additives or smoking behavior. Further research is necessary to find out how online information can be used to effectively communication about the risks of tobacco additives. Trial Registration: Nederlands Trial Register NTR4620; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4620 (Archived by WebCite at http://www.webcitation.org/6oW7w4Gnj) %M 28292739 %R 10.2196/jmir.6785 %U http://www.jmir.org/2017/3/e60/ %U https://doi.org/10.2196/jmir.6785 %U http://www.ncbi.nlm.nih.gov/pubmed/28292739 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 3 %P e64 %T Use of Videos Improves Informed Consent Comprehension in Web-Based Surveys Among Internet-Using Men Who Have Sex With Men: A Randomized Controlled Trial %A Hall,Eric William %A Sanchez,Travis H %A Stein,Aryeh D %A Stephenson,Rob %A Zlotorzynska,Maria %A Sineath,Robert Craig %A Sullivan,Patrick S %+ Department of Epidemiology, Rollins School of Public Health, Emory University, GCR 432, 1518 Clifton Road, Atlanta, GA, 30322, United States, 1 404 727 8965, eric.w.hall@emory.edu %K informed consent %K surveys and questionnaires %K HIV %D 2017 %7 06.03.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Web-based surveys are increasingly used to capture data essential for human immunodeficiency virus (HIV) prevention research. However, there are challenges in ensuring the informed consent of Web-based research participants. Objective: The aim of our study was to develop and assess the efficacy of alternative methods of administering informed consent in Web-based HIV research with men who have sex with men (MSM). Methods: From July to September 2014, paid advertisements on Facebook were used to recruit adult MSM living in the United States for a Web-based survey about risk and preventive behaviors. Participants were randomized to one of the 4 methods of delivering informed consent: a professionally produced video, a study staff-produced video, a frequently asked questions (FAQs) text page, and a standard informed consent text page. Following the behavior survey, participants answered 15 questions about comprehension of consent information. Correct responses to each question were given a score of 1, for a total possible scale score of 15. General linear regression and post-hoc Tukey comparisons were used to assess difference (P<.001) in mean consent comprehension scores. A mediation analysis was used to examine the relationship between time spent on consent page and consent comprehension. Results: Of the 665 MSM participants who completed the comprehension questions, 24.2% (161/665) received the standard consent, 27.1% (180/665) received the FAQ consent, 26.8% (178/665) received the professional consent video, and 22.0% (146/665) received the staff video. The overall average consent comprehension score was 6.28 (SD=2.89). The average consent comprehension score differed significantly across consent type (P<.001), age (P=.04), race or ethnicity (P<.001), and highest level of education (P=.001). Compared with those who received the standard consent, comprehension was significantly higher for participants who received the professional video consent (score increase=1.79; 95% CI 1.02-2.55) and participants who received the staff video consent (score increase=1.79; 95% CI 0.99-2.59). There was no significant difference in comprehension for those who received the FAQ consent. Participants spent more time on the 2 video consents (staff video median time=117 seconds; professional video median time=115 seconds) than the FAQ (median=21 seconds) and standard consents (median=37 seconds). Mediation analysis showed that though time spent on the consent page was partially responsible for some of the differences in comprehension, the direct effects of the professional video (score increase=0.93; 95% CI 0.39-1.48) and the staff-produced video (score increase=0.99; 95% CI 0.42-1.56) were still significant. Conclusions: Video-based consent methods improve consent comprehension of MSM participating in a Web-based HIV behavioral survey. This effect may be partially mediated through increased time spent reviewing the consent material; however, the video consent may still be superior to standard consent in improving participant comprehension of key study facts. Trail Registration: Clinicaltrials.gov NCT02139566; https://clinicaltrials.gov/ct2/show/NCT02139566 (Archived by WebCite at http://www.webcitation.org/6oRnL261N). %M 28264794 %R 10.2196/jmir.6710 %U http://www.jmir.org/2017/3/e64/ %U https://doi.org/10.2196/jmir.6710 %U http://www.ncbi.nlm.nih.gov/pubmed/28264794 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 3 %P e59 %T Readability Formulas and User Perceptions of Electronic Health Records Difficulty: A Corpus Study %A Zheng,Jiaping %A Yu,Hong %+ College of Information and Computer Sciences, University of Massachusetts, 140 Governors Dr, Amherst, MA,, United States, 1 4135452744, jzheng@cs.umass.edu %K electronic health records %K readability %K patients %D 2017 %7 02.03.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Electronic health records (EHRs) are a rich resource for developing applications to engage patients and foster patient activation, thus holding a strong potential to enhance patient-centered care. Studies have shown that providing patients with access to their own EHR notes may improve the understanding of their own clinical conditions and treatments, leading to improved health care outcomes. However, the highly technical language in EHR notes impedes patients’ comprehension. Numerous studies have evaluated the difficulty of health-related text using readability formulas such as Flesch-Kincaid Grade Level (FKGL), Simple Measure of Gobbledygook (SMOG), and Gunning-Fog Index (GFI). They conclude that the materials are often written at a grade level higher than common recommendations. Objective: The objective of our study was to explore the relationship between the aforementioned readability formulas and the laypeople’s perceived difficulty on 2 genres of text: general health information and EHR notes. We also validated the formulas’ appropriateness and generalizability on predicting difficulty levels of highly complex technical documents. Methods: We collected 140 Wikipedia articles on diabetes and 242 EHR notes with diabetes International Classification of Diseases, Ninth Revision code. We recruited 15 Amazon Mechanical Turk (AMT) users to rate difficulty levels of the documents. Correlations between laypeople’s perceived difficulty levels and readability formula scores were measured, and their difference was tested. We also compared word usage and the impact of medical concepts of the 2 genres of text. Results: The distributions of both readability formulas’ scores (P<.001) and laypeople’s perceptions (P=.002) on the 2 genres were different. Correlations of readability predictions and laypeople’s perceptions were weak. Furthermore, despite being graded at similar levels, documents of different genres were still perceived with different difficulty (P<.001). Word usage in the 2 related genres still differed significantly (P<.001). Conclusions: Our findings suggested that the readability formulas’ predictions did not align with perceived difficulty in either text genre. The widely used readability formulas were highly correlated with each other but did not show adequate correlation with readers’ perceived difficulty. Therefore, they were not appropriate to assess the readability of EHR notes. %M 28254738 %R 10.2196/jmir.6962 %U http://www.jmir.org/2017/3/e59/ %U https://doi.org/10.2196/jmir.6962 %U http://www.ncbi.nlm.nih.gov/pubmed/28254738 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 4 %N 1 %P e6 %T Negotiating Tensions Between Theory and Design in the Development of Mailings for People Recovering From Acute Coronary Syndrome %A Witteman,Holly O %A Presseau,Justin %A Nicholas Angl,Emily %A Jokhio,Iffat %A Schwalm,JD %A Grimshaw,Jeremy M %A Bosiak,Beth %A Natarajan,Madhu K %A Ivers,Noah M %+ Pavillon Ferdinand-Vandry 2881, 1050 avenue de la Médecine, Quebec City, QC, G1V 0A6, Canada, 1 418 656 2131 ext 3981, holly.witteman@fmed.ulaval.ca %K user-centered design %K codesign %K medication adherence %K health behavior %K health education %K myocardial infarction %K secondary prevention %K stents %D 2017 %7 01.03.2017 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Taking all recommended secondary prevention cardiac medications and fully participating in a formal cardiac rehabilitation program significantly reduces mortality and morbidity in the year following a heart attack. However, many people who have had a heart attack stop taking some or all of their recommended medications prematurely and many do not complete a formal cardiac rehabilitation program. Objective: The objective of our study was to develop a user-centered, theory-based, scalable intervention of printed educational materials to encourage and support people who have had a heart attack to use recommended secondary prevention cardiac treatments. Methods: Prior to the design process, we conducted theory-based interviews and surveys with patients who had had a heart attack to identify key determinants of secondary prevention behaviors. Our interdisciplinary research team then partnered with a patient advisor and design firm to undertake an iterative, theory-informed, user-centered design process to operationalize techniques to address these determinants. User-centered design requires considering users’ needs, goals, strengths, limitations, context, and intuitive processes; designing prototypes adapted to users accordingly; observing how potential users respond to the prototype; and using those data to refine the design. To accomplish these tasks, we conducted user research to develop personas (archetypes of potential users), developed a preliminary prototype using behavior change theory to map behavior change techniques to identified determinants of medication adherence, and conducted 2 design cycles, testing materials via think-aloud and semistructured interviews with a total of 11 users (10 patients who had experienced a heart attack and 1 caregiver). We recruited participants at a single cardiac clinic using purposive sampling informed by our personas. We recorded sessions with users and extracted key themes from transcripts. We held interdisciplinary team discussions to interpret findings in the context of relevant theory-based evidence and iteratively adapted the intervention accordingly. Results: Through our iterative development and testing, we identified 3 key tensions: (1) evidence from theory-based studies versus users’ feelings, (2) informative versus persuasive communication, and (3) logistical constraints for the intervention versus users’ desires or preferences. We addressed these by (1) identifying root causes for users’ feelings and addressing those to better incorporate theory- and evidence-based features, (2) accepting that our intervention was ethically justified in being persuasive, and (3) making changes to the intervention where possible, such as attempting to match imagery in the materials to patients’ self-images. Conclusions: Theory-informed interventions must be operationalized in ways that fit with user needs. Tensions between users’ desires or preferences and health care system goals and constraints must be identified and addressed to the greatest extent possible. A cluster randomized controlled trial of the final intervention is currently underway. %M 28249831 %R 10.2196/humanfactors.6502 %U http://humanfactors.jmir.org/2017/1/e6/ %U https://doi.org/10.2196/humanfactors.6502 %U http://www.ncbi.nlm.nih.gov/pubmed/28249831 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 3 %N 1 %P e7 %T SmartMom Text Messaging for Prenatal Education: A Qualitative Focus Group Study to Explore Canadian Women’s Perceptions %A Munro,Sarah %A Hui,Amber %A Salmons,Vanessa %A Solomon,Carolyn %A Gemmell,Emily %A Torabi,Nahal %A Janssen,Patricia A %+ School of Population and Public Health, Faculty of Medicine, University of British Columbia, 2206 East Mall, Vancouver, BC, V6T 1Z3, Canada, 1 604 827 4026, patti.janssen@ubc.ca %K pregnancy %K text messaging %K prenatal education %K health behavior %D 2017 %7 07.02.2017 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: We engaged Canadian women in the development of a prenatal education program delivered via one-way text messaging called SmartMom. SmartMom is the first peer-reviewed, evidence-based mHealth program for prenatal education in Canada and the first to be endorsed by the Society of Obstetricians and Gynaecologists of Canada. Objective: To explore women’s preferences for a prenatal education program by text messaging. Methods: We conducted a qualitative focus group study in three Canadian communities in the Northern Health Authority. Women completed a demographic questionnaire, participated in a guided discussion about their pregnancy information-seeking behavior, reviewed a printed copy of the SmartMom text messages, and then engaged in a moderated discussion about their perceptions of the usability of the SmartMom program. Open-ended questions explored women’s perceptions regarding the message content, acceptability of receiving information by text message, positive health behaviors they might engage in after receiving a message, modifiable program factors, and intention to use the program. Thematic analysis of transcribed audio recordings was undertaken and modifications were made to the SmartMom program based on these findings. Results: A total of 40 women participated in seven focus groups in three rural northern communities. The vast majority had a mobile phone (39/40, 98%), used text messages “all the time” (28/40, 70%), and surfed the Internet on their phone (37/40, 93%). Participants perceived SmartMom to be highly acceptable and relevant. The text message modality reflected how participants currently sought pregnancy-related information and provided them with local information tailored to their gestational age, which they had not received through other pregnancy resources. Women recommended adding the opportunity to receive supplemental streams of messages tailored to their individual needs, for example, depression, pregnancy after previous cesarean, >35 years of age, new immigrants, and harm reduction for smoking and alcohol. Conclusions: This formative qualitative evaluation provides evidence that a prenatal education program by text messaging, SmartMom, is acceptable to the end users. These findings support the usability of the SmartMom program at a population level and the development of an evaluation program exploring the effects of the text messages on adoption of health-promoting behaviors and maternal-child health outcomes. %M 28174149 %R 10.2196/publichealth.6949 %U http://publichealth.jmir.org/2017/1/e7/ %U https://doi.org/10.2196/publichealth.6949 %U http://www.ncbi.nlm.nih.gov/pubmed/28174149 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 2 %P e20 %T Searching for Real-World Effectiveness of Health Care Innovations: Scoping Study of Social Prescribing for Diabetes %A Pilkington,Karen %A Loef,Martin %A Polley,Marie %+ School of Health Sciences and Social Work, Faculty of Science, University of Portsmouth, St Michael's Building, 2 King Richard 1st Road, Portsmouth, P01 2FR, United Kingdom, 44 123 984 4497, karen.pilkington@port.ac.uk %K diabetes mellitus, type 2 %K evaluation studies %K primary health care %K program evaluation %D 2017 %7 02.02.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Social prescribing is a process whereby primary care patients are linked or referred to nonmedical sources of support in the community and voluntary sector. It is a concept that has arisen in practice and implemented widely in the United Kingdom and has been evaluated by various organizations. Objective: The aim of our study was to characterize, collate, and analyze the evidence from evaluation of social prescribing for type 2 diabetes in the United Kingdom and Ireland, comparing information available on publicly available websites with the published literature. Methods: We used a broad, pragmatic definition of social prescribing and conducted Web-based searches for websites of organizations providing potentially relevant services. We also explored linked information. In parallel, we searched Medline, PubMed, Cochrane Library, Google Scholar, and reference lists for relevant studies published in peer-reviewed journals. We extracted the data systematically on the characteristics, any reported evaluation, outcomes measured and results, and terminology used to describe each service. Results: We identified 40 UK- or Ireland-based projects that referred people with type 2 diabetes and prediabetes to nonmedical interventions or services provided in the community. We located evaluations of 24 projects; 11 as published papers, 12 as Web-based reports, and 1 as both a paper and a Web-based report. The interventions and services identified included structured group educational programs, exercise referral schemes, and individualized advice and support with signposting of health-related activities in the community. Although specific interventions such as community-based group educational programs and exercise referral have been evaluated in randomized controlled trials, evaluation of individualized social prescribing services involving people with type 2 diabetes has, in most cases, used pre-post and mixed methods approaches. These evaluations report generic improvement in a broad range of outcomes and provide an insight into the criteria for the success of social prescribing services. Conclusions: Our study revealed the varied models of social prescribing and nonmedical, community-based services available to people with type 2 diabetes and the extent of evaluation of these, which would not have been achieved by searching databases alone. The findings of this scoping study do not prove that social prescribing is an effective measure for people with type 2 diabetes in the United Kingdom, but can be used to inform future evaluation and contribute to the development of the evidence base for social prescribing. Accessing Web-based information provides a potential method for investigating how specific innovative health concepts, such as social prescribing, have been translated, implemented, and evaluated in practice. Several challenges were encountered including defining the concept, focusing on process plus intervention, and searching diverse, evolving Web-based sources. Further exploration of this approach will inform future research on the application of innovative health care concepts into practice. %M 28153817 %R 10.2196/jmir.6431 %U http://www.jmir.org/2017/2/e20/ %U https://doi.org/10.2196/jmir.6431 %U http://www.ncbi.nlm.nih.gov/pubmed/28153817 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 19 %N 1 %P e16 %T Developing Nutrition Label Reading Skills: A Web-Based Practice Approach %A Miller,Lisa M Soederberg %A Beckett,Laurel A %A Bergman,Jacqueline J %A Wilson,Machelle D %A Applegate,Elizabeth A %A Gibson,Tanja N %+ Department of Human Ecology, University of California, Davis, One Shields Ave, Davis, CA, 95616, United States, 1 530 752 3955, lmsmiller@ucdavis.edu %K nutrition labeling %K dietary habits %K automatic information processing %K food selection %K choice behavior %D 2017 %7 13.01.2017 %9 Original Paper %J J Med Internet Res %G English %X Background: Nutrition labels offer the information needed to follow Dietary Guidelines for Americans, yet many individuals use labels infrequently or ineffectively due to limited comprehension and the effort required to use them. Objective: The objective of our study was to develop and test a Web-based label-reading training tool to improve individuals’ ability to use labels to select more healthful foods. We were particularly interested in determining whether practice can lead to increased accuracy using labels as well as decreased effort, together reflecting greater efficiency. We compared a basic and an enhanced, prior-knowledge version of the tool that contained an additional component, a brief nutrition tutorial. Methods: Participants were 140 college students with an average age of 20.7 (SD 2.1) years and education 14.6 (SD 1.2) years, who completed 3 sets of practice that were designed to teach them, through repetition and feedback, how to use nutrition labels to select more healthful products. Prior to training, participants in the prior-knowledge group viewed a multimedia nutrition presentation, which those in the basic group did not receive. Mixed-effects models tested for improvement in accuracy and speed with practice, and whether improvements varied by group. Results: The training led to significant increases in average accuracy across the 3 practice sets (averaging 79% [19/24 questions], 92% [22/24], 96% [23/24] respectively, P<.001), as well as decreases in time to complete with mean (SD) values of 8.7 (2.8), 4.6 (1.8), and 4.1 (1.7) seconds, respectively. In block 3, the odds of a correct answer for the prior-knowledge group were 79% higher (odds ratio, OR=1.79, 95% CI 1.1-2.9) than those for the basic group (P=.02). There was no significant difference between the groups in block 2 (P=.89). Conclusions: Practice led to improvements in nutrition label reading skills that are indicative of early stages of automatic processing. To the extent that automatic processes are at the core of healthy habit change, this may be an efficient way to improve dietary decision-making. %M 28087497 %R 10.2196/jmir.6583 %U http://www.jmir.org/2017/1/e16/ %U https://doi.org/10.2196/jmir.6583 %U http://www.ncbi.nlm.nih.gov/pubmed/28087497 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 12 %P e332 %T Increasing Consumer Engagement by Tailoring a Public Reporting Website on the Quality of Diabetes Care: A Qualitative Study %A Smith,Maureen A %A Bednarz,Lauren %A Nordby,Peter A %A Fink,Jennifer %A Greenlee,Robert T %A Bolt,Daniel %A Magnan,Elizabeth M %+ Health Innovation Program, School of Medicine and Public Health, University of Wisconsin–Madison, 800 University Bay Dr, Suite 210, Madison, WI, 53705, United States, 1 608 262 4802, maureensmith@wisc.edu %K diabetes %K chronic conditions %K public reports %K patient engagement %D 2016 %7 21.12.2016 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 28003173 %R 10.2196/jmir.6555 %U http://www.jmir.org/2016/12/e332/ %U https://doi.org/10.2196/jmir.6555 %U http://www.ncbi.nlm.nih.gov/pubmed/28003173 %0 Journal Article %@ 2369-3762 %I JMIR Publications %V 2 %N 2 %P e17 %T Teaching Shared Decision Making to Family Medicine Residents: A Descriptive Study of a Web-Based Tutorial %A Dion,Maxime %A Diouf,Ndeye Thiab %A Robitaille,Hubert %A Turcotte,Stéphane %A Adekpedjou,Rhéda %A Labrecque,Michel %A Cauchon,Michel %A Légaré,France %+ Population Health and Practice-Changing Research Group, CHU de Québec Research Centre, Saint-François-d'Assise Hospital, 10, rue de l'Espinay, Quebec, QC, G1L 3L5, Canada, 1 418 525 4437, France.Legare@mfa.ulaval.ca %K decision making %K patient participation %K education, medical, graduate %K educational measurement %K program evaluation %K computer-assisted instruction %D 2016 %7 19.12.2016 %9 Original Paper %J JMIR Med Educ %G English %X Background: DECISION+2, a Web-based tutorial, was designed to train family physicians in shared decision making (SDM) regarding the use of antibiotics for acute respiratory infections (ARIs). It is currently mandatory for second-year family medicine residents at Université Laval, Quebec, Canada. However, little is known about how such tutorials are used, their effect on knowledge scores, or how best to assess resident participation. Objective: The objective of our study was to describe the usage of this Web-based training platform by family medicine residents over time, evaluate its effect on their knowledge scores, and identify what kinds of data are needed for a more comprehensive analysis of usage and knowledge acquisition. Methods: We identified, collected, and analyzed all available data about participation in and current usage of the tutorial and its before-and-after 10-item knowledge test. Residents were separated into 3 log-in periods (2012-2013, 2013-2014, and 2014-2015) depending on the day of their first connection. We compared residents’ participation rates between entry periods (Cochran-Armitage test), assessed the mean rank of the difference in total scores and category scores between pre- and posttest (Wilcoxon signed-rank test), and compared frequencies of each. Subsequent to analyses, we identified types of data that would have provided a more complete picture of the usage of the program and its effect on knowledge scores. Results: The tutorial addresses 3 knowledge categories: diagnosing ARIs, treating ARIs, and SDM regarding the use of antibiotics for treating ARIs. From July 2012 to July 2015, all 387 second-year family medicine residents were eligible to take the Web-based tutorial. Out of the 387 eligible residents, 247 (63.8%) logged in at least once. Their participation rates varied between entry periods, most significantly between the 2012-2013 and 2013-2014 cohorts (P=.006). For the 109 out of 387 (28.2%) residents who completed the tutorial and both tests, total and category scores significantly improved between pre- and posttest (all P values <.001). However, the frequencies of those answering correctly on 2 of the 3 SDM questions did not increase significantly (P>.99, P=.25). Distribution of pre- or posttest total and category scores did not increase between entry periods (all P values >.1). Available data were inadequate for evaluating the associations between the tutorial and its impact on the residents’ scores and therefore could tell us little about its effect on increasing their knowledge. Conclusion: Residents’ use of this Web-based tutorial appeared to increase between entry periods following the changes to the SDM program, and the tutorial seemed less effective for increasing SDM knowledge scores than for diagnosis or treatment scores. However, our results also highlight the need to improve data availability before participation in Web-based SDM tutorials can be properly evaluated or knowledge scores improved. %M 27993760 %R 10.2196/mededu.6442 %U http://mededu.jmir.org/2016/2/e17/ %U https://doi.org/10.2196/mededu.6442 %U http://www.ncbi.nlm.nih.gov/pubmed/27993760 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 12 %P e322 %T A Diabetes Self-Management Program: 12-Month Outcome Sustainability From a Nonreinforced Pragmatic Trial %A Lorig,Kate %A Ritter,Philip L %A Turner,Ralph M %A English,Kathleen %A Laurent,Diana D %A Greenberg,Jay %+ Stanford Patient Education Research Center, Medicine, Stanford University, 1000 Welch Rd, Palo Alto, CA, 94306, United States, 1 650 725 2873, philr@stanford.edu %K patient education %K self-management %K type 2 diabetes %D 2016 %7 15.12.2016 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 27979790 %R 10.2196/jmir.6484 %U http://www.jmir.org/2016/12/e322/ %U https://doi.org/10.2196/jmir.6484 %U http://www.ncbi.nlm.nih.gov/pubmed/27979790 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 11 %P e291 %T Preconception Care Education for Women With Diabetes: A Systematic Review of Conventional and Digital Health Interventions %A Nwolise,Chidiebere Hope %A Carey,Nicola %A Shawe,Jill %+ School of Health Sciences, Faculty of Health & Medical Sciences, University of Surrey, Fifth Floor, Duke of Kent Building, Guildford, GU2 7XH, United Kingdom, 44 1483686717, c.nwolise@surrey.ac.uk %K preconception care %K education %K diabetes mellitus %K women %K review %K smartphone %K mobile applications %K technology %D 2016 %7 08.11.2016 %9 Review %J J Med Internet Res %G English %X Background: Worldwide, 199.5 million women have diabetes mellitus (DM). Preconception care (PCC) education starting from adolescence has been recommended as an effective strategy for safeguarding maternal and child health. However, traditional preconception care advice provided by health care professionals (HCPs) within clinic settings is hindered by inadequate resources, suboptimal coverage, and busy clinics. Electronic health (eHealth), which is instrumental in solving problems around scarce health resources, could be of value in overcoming these limitations and be used to improve preconception care and pregnancy outcomes for women with DM. Objective: The objectives were to: (1) identify, summarize, and critically appraise the current methods of providing PCC education; (2) examine the relationship between PCC educational interventions (including use of technology as an intervention medium) on patient and behavioral outcomes; and (3) highlight limitations of current interventions and make recommendations for development of eHealth in this field. Methods: Electronic databases were searched using predefined search terms for PCC education in women with type 1 or 2 DM for quantitative studies from 2003 until June 2016. Of the 1969 titles identified, 20 full papers were retrieved and 12 papers were included in this review. Results: The reviewed studies consistently reported that women receiving educational interventions via health care professionals and eHealth had significantly improved levels of glycosylated hemoglobin (P<.001) with fewer preterm deliveries (P=.02) and adverse fetal outcomes (P=.03). Significant improvements in knowledge (P<.001) and attitudes toward seeking PCC (P=.003) were reported along with reduced barriers (P<.001). Conclusions: PCC has a positive effect on pregnancy outcomes for women with DM. However, uptake of PCC is low and the use of eHealth applications for PCC of women with DM is still in its infancy. Initial results are promising; however, future research incorporating mobile phones and apps is needed. Clearly, there is much to be done if the full potential of eHealth PCC to improve obstetric outcomes for women with DM is to be realized. %M 27826131 %R 10.2196/jmir.5615 %U http://www.jmir.org/2016/11/e291/ %U https://doi.org/10.2196/jmir.5615 %U http://www.ncbi.nlm.nih.gov/pubmed/27826131 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 10 %P e283 %T Role of Psychosocial Factors and Health Literacy in Pregnant Women’s Intention to Use a Decision Aid for Down Syndrome Screening: A Theory-Based Web Survey %A Delanoë,Agathe %A Lépine,Johanie %A Turcotte,Stéphane %A Leiva Portocarrero,Maria Esther %A Robitaille,Hubert %A Giguère,Anik MC %A Wilson,Brenda J %A Witteman,Holly O %A Lévesque,Isabelle %A Guillaumie,Laurence %A Légaré,France %+ Populations Health and Optimal Health Practices Research Group, CHU de Québec-Université Laval, Hôpital St-François d’Assise, D6-737, 10 rue Espinay, Quebec City, QC, G1L 3L5, Canada, 1 418 525 4437, France.Legare@mfa.ulaval.ca %K decision aids %K behavior %K intention %K prenatal diagnosis %K decision making %K health literacy %D 2016 %7 28.10.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Deciding about undergoing prenatal screening is difficult, as it entails risks, potential loss and regrets, and challenges to personal values. Shared decision making and decision aids (DAs) can help pregnant women give informed and values-based consent or refusal to prenatal screening, but little is known about factors influencing the use of DAs. Objective: The objective of this study was to identify the influence of psychosocial factors on pregnant women’s intention to use a DA for prenatal screening for Down syndrome (DS). We also added health literacy variables to explore their influence on pregnant women’s intention. Methods: We conducted a survey of pregnant women in the province of Quebec (Canada) using a Web panel. Eligibility criteria included age >18 years, >16 weeks pregnant, low-risk pregnancy, and having decided about prenatal screening for the current pregnancy. We collected data based on an extended version of the Theory of Planned Behavior assessing 7 psychosocial constructs (intention, attitude, anticipated regret, subjective norm, descriptive norm, moral norm, and perceived control), 3 related sets of beliefs (behavioral, normative, and control beliefs), 4 health literacy variables, and sociodemographics. Eligible women watched a video depicting the behavior of interest before completing a Web-based questionnaire. We performed descriptive, bivariate, and ordinal logistic regression analyses. Results: Of the 383 eligible pregnant women who agreed to participate, 350 pregnant women completed the Web-based questionnaire and 346 were retained for analysis (completion rate 350/383, 91.4%; mean age 30.1, SD 4.3, years). In order of importance, factors influencing intention to use a DA for prenatal screening for DS were attitude (odds ratio, OR, 9.16, 95% CI 4.02-20.85), moral norm (OR 7.97, 95% CI 4.49-14.14), descriptive norm (OR 2.83, 95% CI 1.63-4.92), and anticipated regret (OR 2.43, 95% CI 1.71-3.46). Specific attitudinal beliefs significantly related to intention were that using a DA would reassure them (OR 2.55, 95% CI 1.73-4.01), facilitate their reflections with their spouse (OR 1.55, 95% CI 1.05-2.29), and let them know about the advantages of doing or not doing the test (OR 1.53, 95% CI 1.05-2.24). Health literacy did not add to the predictive power of our model (P values range .43-.92). Conclusions: Implementation interventions targeting the use of a DA for prenatal screening for DS by pregnant women should address a number of modifiable factors, especially by introducing the advantages of using the DA (attitude), informing pregnant women that they might regret not using it (anticipated regret), and presenting the use of DAs as a common practice (descriptive norm). However, interventions on moral norms related to the use of DA should be treated with caution. Further studies that include populations with low health literacy are needed before decisive claims can be made. %M 27793792 %R 10.2196/jmir.6362 %U http://www.jmir.org/2016/10/e283/ %U https://doi.org/10.2196/jmir.6362 %U http://www.ncbi.nlm.nih.gov/pubmed/27793792 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 8 %P e228 %T An Evaluation and Ranking of Children’s Hospital Websites in the United States %A Huerta,Timothy R %A Walker,Daniel M %A Ford,Eric W %+ The Ohio State University, College of Medicine, Department of Family Medicine, 2231 North High St., Rm 265, Columbus, OH, 43201, United States, 1 6143666636, timothy.huerta@osumc.edu %K pediatric hospital %K Internet %K social media %K patient participation %K patient education %D 2016 %7 22.08.2016 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 27549074 %R 10.2196/jmir.5799 %U http://www.jmir.org/2016/8/e228/ %U https://doi.org/10.2196/jmir.5799 %U http://www.ncbi.nlm.nih.gov/pubmed/27549074 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 8 %P e214 %T Spanish-Language Consumer Health Information Technology Interventions: A Systematic Review %A Chaet,Alexis V %A Morshedi,Bijan %A Wells,Kristen J %A Barnes,Laura E %A Valdez,Rupa %+ Department of Public Health Sciences, University of Virginia, PO Box 800717, Charlottesville, VA, 22908, United States, 1 4349822510, rsv9d@virginia.edu %K health information technology %K consumer health information %K consumer health informatics %K health education %K health promotion %K health care quality, access, and evaluation %K patient compliance %K patient participation %K patient satisfaction %K patient preference %K patient education %K preventive health services %K Hispanic %K Latinos %K cultural characteristics %K cultural competency %K ethnicity %D 2016 %7 10.08.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: As consumer health information technology (IT) becomes more thoroughly integrated into patient care, it is critical that these tools are appropriate for the diverse patient populations whom they are intended to serve. Cultural differences associated with ethnicity are one aspect of diversity that may play a role in user-technology interactions. Objective: Our aim was to evaluate the current scope of consumer health IT interventions targeted to the US Spanish-speaking Latino population and to characterize these interventions in terms of technological attributes, health domains, cultural tailoring, and evaluation metrics. Methods: A narrative synthesis was conducted of existing Spanish-language consumer health IT interventions indexed within health and computer science databases. Database searches were limited to English-language articles published between January 1990 and September 2015. Studies were included if they detailed an assessment of a patient-centered electronic technology intervention targeting health within the US Spanish-speaking Latino population. Included studies were required to have a majority Latino population sample. The following were extracted from articles: first author’s last name, publication year, population characteristics, journal domain, health domain, technology platform and functionality, available languages of intervention, US region, cultural tailoring, intervention delivery location, study design, and evaluation metrics. Results: We included 42 studies in the review. Most of the studies were published between 2009 and 2015 and had a majority percentage of female study participants. The mean age of participants ranged from 15 to 68. Interventions most commonly focused on urban population centers and within the western region of the United States. Of articles specifying a technology domain, computer was found to be most common; however, a fairly even distribution across all technologies was noted. Cancer, diabetes, and child, infant, or maternal health were the most common health domains targeted by consumer health IT interventions. More than half of the interventions were culturally tailored. The most frequently used evaluation metric was behavior/attitude change, followed by usability and knowledge retention. Conclusions: This study characterizes the existing body of research exploring consumer health IT interventions for the US Spanish-speaking Latino population. In doing so, it reveals three primary needs within the field. First, while the increase in studies targeting the Latino population in the last decade is a promising advancement, future research is needed that focuses on Latino subpopulations previously overlooked. Second, preliminary steps have been taken to culturally tailor consumer health IT interventions for the US Spanish-speaking Latino population; however, focus must expand beyond intervention content. Finally, the field should work to promote long-term evaluation of technology efficacy, moving beyond intermediary measures toward measures of health outcomes. %M 27511437 %R 10.2196/jmir.5794 %U http://www.jmir.org/2016/8/e214/ %U https://doi.org/10.2196/jmir.5794 %U http://www.ncbi.nlm.nih.gov/pubmed/27511437 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 5 %N 3 %P e147 %T An Online Learning Module to Increase Self-Efficacy and Involvement in Care for Patients With Advanced Lung Cancer: Research Protocol %A Janssen,Anna %A Shaw,Tim %A Nagrial,Adnan %A Pene,Christopher %A Rabbets,Melanie %A Carlino,Matteo %A Zachulski,Clare %A Phillips,Jane %A Birnbaum,Robert %A Gandhi,Tejal %A Harnett,Paul %+ Research in Implementation Science and eHealth, Faculty of Health Sciences, University of Sydney, Level 2, Charles Perkins Centre D17, The University of Sydney, Sydney,, Australia, 61 9036 9406, anna.janssen@sydney.edu.au %K patient education %K eHealth %K online learning %K lung cancer %K palliative care %K side-effect management %K patient safety and quality %K patient self-efficacy %D 2016 %7 08.08.2016 %9 Protocol %J JMIR Res Protoc %G English %X Background: Improving patient care for individuals with lung cancer is a priority due to the increasing burden of the disease globally. One way this can be done is by improving patient self-management capabilities through increasing their self-efficacy. This can improve positive outcomes for patients with chronic conditions and increase their ability to manage the challenges of such illnesses. Unfortunately, patients with chronic conditions often struggle to travel far from home to engage with patient education events, a common means of improving self-efficacy. The development of more accessible tools for improving patient self-efficacy is required to increase quality of life for patients with chronic conditions. Objective: To evaluate the feasibility of delivering symptom identification and management information to patients with advanced lung cancer using an online program. Methods: This article describes a pre-post test study to evaluate a Qstream online learning platform to improve patient self-efficacy for managing advanced lung cancer symptoms. Undertaking this program should increase participant knowledge about the side-effects they may experience as a result of their treatment and in turn increase help-seeking behavior and self-efficacy for the participant cohort. Quantitative data collected by the Qstream platform on the completion rates of participants will be used as a tool to evaluate the intervention. Additionally, validated scales will be used to collect data on patient self-efficacy. Qualitative data will also be collected via an exit survey and thematic content analysis of semi-structured interviews. Results: The research is in the preliminary stages but thus far a protocol has been approved in support of the project. Additionally, advisory committee members have been identified and initial meetings have been undertaken. Conclusions: Development of new approaches for increasing patient understanding of their care is important to ensure high quality care continues to be delivered in the clinical setting. %M 27503206 %R 10.2196/resprot.5547 %U http://www.researchprotocols.org/2016/3/e147/ %U https://doi.org/10.2196/resprot.5547 %U http://www.ncbi.nlm.nih.gov/pubmed/27503206 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 7 %P e206 %T An Integrated Process and Outcome Evaluation of a Web-Based Communication Tool for Patients With Malignant Lymphoma: Randomized Controlled Trial %A van Bruinessen,Inge Renske %A van Weel-Baumgarten,Evelyn M %A Gouw,Hans %A Zijlstra,Josée M %A van Dulmen,Sandra %+ NIVEL Netherlands Institute for Health Services Research, Otterstraat 118-124, Utrecht, 3500 BN, Netherlands, 31 302729680, i.vanbruinessen@nivel.nl %K RCT %K communication aid %K Web-based intervention %K self-help application %K hematologic malignancies %K lymphoma cancer %K patient participation %D 2016 %7 29.07.2016 %9 Original Paper %J J Med Internet Res %G English %X 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) %M 27473173 %R 10.2196/jmir.5877 %U http://www.jmir.org/2016/7/e206/ %U https://doi.org/10.2196/jmir.5877 %U http://www.ncbi.nlm.nih.gov/pubmed/27473173 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 7 %P e208 %T Older Cancer Patients’ User Experiences With Web-Based Health Information Tools: A Think-Aloud Study %A Bolle,Sifra %A Romijn,Geke %A Smets,Ellen M A %A Loos,Eugene F %A Kunneman,Marleen %A van Weert,Julia C M %+ Amsterdam School of Communication Research/ ASCoR, Department of Communication Science, University of Amsterdam, P.O. Box 15791, Amsterdam, 1001 NG, Netherlands, 31 205254886, S.Bolle@uva.nl %K user experience %K eHealth %K usability %K think aloud %K aging %K cancer %D 2016 %7 25.07.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Health information is increasingly presented on the Internet. Several Web design guidelines for older Web users have been proposed; however, these guidelines are often not applied in website development. Furthermore, although we know that older individuals use the Internet to search for health information, we lack knowledge on how they use and evaluate Web-based health information. Objective: This study evaluates user experiences with existing Web-based health information tools among older (≥ 65 years) cancer patients and survivors and their partners. The aim was to gain insight into usability issues and the perceived usefulness of cancer-related Web-based health information tools. Methods: We conducted video-recorded think-aloud observations for 7 Web-based health information tools, specifically 3 websites providing cancer-related information, 3 Web-based question prompt lists (QPLs), and 1 values clarification tool, with colorectal cancer patients or survivors (n=15) and their partners (n=8) (median age: 73; interquartile range 70-79). Participants were asked to think aloud while performing search, evaluation, and application tasks using the Web-based health information tools. Results: Overall, participants perceived Web-based health information tools as highly useful and indicated a willingness to use such tools. However, they experienced problems in terms of usability and perceived usefulness due to difficulties in using navigational elements, shortcomings in the layout, a lack of instructions on how to use the tools, difficulties with comprehensibility, and a large amount of variety in terms of the preferred amount of information. Although participants frequently commented that it was easy for them to find requested information, we observed that the large majority of the participants were not able to find it. Conclusions: Overall, older cancer patients appreciate and are able to use cancer information websites. However, this study shows the importance of maintaining awareness of age-related problems such as cognitive and functional decline and navigation difficulties with this target group in mind. The results of this study can be used to design usable and useful Web-based health information tools for older (cancer) patients. %M 27457709 %R 10.2196/jmir.5618 %U http://www.jmir.org/2016/7/e208/ %U https://doi.org/10.2196/jmir.5618 %U http://www.ncbi.nlm.nih.gov/pubmed/27457709 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 7 %P e162 %T Paper-Based Survivorship Care Plans May be Less Helpful for Cancer Patients Who Search for Disease-Related Information on the Internet: Results of the Registrationsystem Oncological Gynecology (ROGY) Care Randomized Trial %A Nicolaije,Kim AH %A Ezendam,Nicole PM %A Pijnenborg,Johanna MA %A Boll,Dorry %A Vos,Maria Caroline %A Kruitwagen,Roy FPM %A van de Poll-Franse,Lonneke V %+ Center of Research on Psychology in Somatic diseases (CoRPS), Department of Medical and Clinical Psychology, Tilburg University, Warandelaan 2, PO Box 90153, Tilburg, 5000 LE, Netherlands, 31 134663118, k.a.h.schellekens-nicolaije@uu.nl %K Survivorship Care Plan %K Internet use %K pragmatic cluster randomized trial %K endometrial neoplasms %K patient-reported outcomes %K information provision %D 2016 %7 08.07.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: The Institute of Medicine recommends Survivorship Care Plans (SCPs) for all cancer survivors. However, it is unclear whether certain patient groups may or may not benefit from SCPs. Objective: The aim was to assess whether the effects of an automatically generated paper SCP on patients’ satisfaction with information provision and care, illness perceptions, and health care utilization were moderated by disease-related Internet use. Methods: Twelve hospitals were randomized to either SCP care or usual care in the pragmatic cluster randomized Registrationsystem Oncological GYnecology (ROGY) Care trial. Newly diagnosed endometrial cancer patients completed questionnaires after diagnosis (N=221; response: 74.7%, 221/296), 6 months (n=158), and 12 months (n=147), including patients’ satisfaction with information provision and care, illness perceptions, health care utilization (how many times patients visited a medical specialist or primary care physician about their cancer in the past 6 months), and disease-related Internet use (whether patients used the Internet to look for information about cancer). Results: In total, 80 of 221 (36.2%) patients used the Internet to obtain disease-related information. Disease-related Internet use moderated the SCP care effect on the amount of information received about the disease (P=.03) and medical tests (P=.01), helpfulness of the information (P=.01), and how well patients understood their illness (P=.04). All stratified analyses were not statistically significant. However, it appeared that patients who did not seek disease-related information on the Internet in the SCP care arm reported receiving more information about their disease (mean 63.9, SD 20.1 vs mean 58.3, SD 23.7) and medical tests (mean 70.6, SD 23.5 vs mean 64.7, SD 24.9), finding the information more helpful (76.7, SD 22.9 vs mean 67.8, SD 27.2; scale 0-100), and understanding their illness better (mean 6.6, SD 3.0 vs mean 6.1, SD 3.2; scale 1-10) than patients in the usual care arm did. In addition, although all stratified analyses were not significant, patients who did seek disease-related information on the Internet in the SCP care arm appeared to receive less information about their disease (mean 65.7, SD 23.4 vs mean 67.1, SD 20.7) and medical tests (mean 72.4, SD 23.5 vs mean 75.3, SD 21.6), did not find the information more helpful (mean 78.6, SD 21.2 vs mean 76.0, SD 22.0), and reported less understanding of their illness (mean 6.3, SD 2.8 vs mean 7.1, SD 2.7) than patients in the usual care arm did. Conclusions: Paper SCPs appear to improve the amount of information received about the disease and medical tests, the helpfulness of the information, and understanding of the illness for patients who do not search for disease-related information on the Internet. In contrast, paper SCPs do not seem beneficial for patients who do seek disease-related information on the Internet. Trial Registration: ClinicalTrials.gov NCT01185626; https://clinicaltrials.gov/ct2/show/NCT01185626 (Archived by WebCite at http://www.webcitation.org/6fpaMXsDn) %M 27392550 %R 10.2196/jmir.4914 %U http://www.jmir.org/2016/7/e162/ %U https://doi.org/10.2196/jmir.4914 %U http://www.ncbi.nlm.nih.gov/pubmed/27392550 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 6 %P e150 %T A Dietary Feedback System for the Delivery of Consistent Personalized Dietary Advice in the Web-Based Multicenter Food4Me Study %A Forster,Hannah %A Walsh,Marianne C %A O'Donovan,Clare B %A Woolhead,Clara %A McGirr,Caroline %A Daly,E.J %A O'Riordan,Richard %A Celis-Morales,Carlos %A Fallaize,Rosalind %A Macready,Anna L %A Marsaux,Cyril F M %A Navas-Carretero,Santiago %A San-Cristobal,Rodrigo %A Kolossa,Silvia %A Hartwig,Kai %A Mavrogianni,Christina %A Tsirigoti,Lydia %A Lambrinou,Christina P %A Godlewska,Magdalena %A Surwiłło,Agnieszka %A Gjelstad,Ingrid Merethe Fange %A Drevon,Christian A %A Manios,Yannis %A Traczyk,Iwona %A Martinez,J Alfredo %A Saris,Wim H M %A Daniel,Hannelore %A Lovegrove,Julie A %A Mathers,John C %A Gibney,Michael J %A Gibney,Eileen R %A Brennan,Lorraine %+ UCD Institute of Food and Health, University College Dublin, Belfield, Dublin,, Ireland, 353 1 716 ext 2811, lorraine.brennan@ucd.ie %K dietary feedback %K Web-based dietary assessment tool %K Food4Me %K dietary decision trees %K personalized nutrition %K human nutrition %D 2016 %7 30.06.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Despite numerous healthy eating campaigns, the prevalence of diets high in saturated fatty acids, sugar, and salt and low in fiber, fruit, and vegetables remains high. With more people than ever accessing the Internet, Web-based dietary assessment instruments have the potential to promote healthier dietary behaviors via personalized dietary advice. Objective: The objectives of this study were to develop a dietary feedback system for the delivery of consistent personalized dietary advice in a multicenter study and to examine the impact of automating the advice system. Methods: The development of the dietary feedback system included 4 components: (1) designing a system for categorizing nutritional intakes; (2) creating a method for prioritizing 3 nutrient-related goals for subsequent targeted dietary advice; (3) constructing decision tree algorithms linking data on nutritional intake to feedback messages; and (4) developing personal feedback reports. The system was used manually by researchers to provide personalized nutrition advice based on dietary assessment to 369 participants during the Food4Me randomized controlled trial, with an automated version developed on completion of the study. Results: Saturated fatty acid, salt, and dietary fiber were most frequently selected as nutrient-related goals across the 7 centers. Average agreement between the manual and automated systems, in selecting 3 nutrient-related goals for personalized dietary advice across the centers, was highest for nutrient-related goals 1 and 2 and lower for goal 3, averaging at 92%, 87%, and 63%, respectively. Complete agreement between the 2 systems for feedback advice message selection averaged at 87% across the centers. Conclusions: The dietary feedback system was used to deliver personalized dietary advice within a multi-country study. Overall, there was good agreement between the manual and automated feedback systems, giving promise to the use of automated systems for personalizing dietary advice. Trial Registration: Clinicaltrials.gov NCT01530139; https://clinicaltrials.gov/ct2/show/NCT01530139 (Archived by WebCite at http://www.webcitation.org/6ht5Dgj8I) %M 27363307 %R 10.2196/jmir.5620 %U http://www.jmir.org/2016/6/e150/ %U https://doi.org/10.2196/jmir.5620 %U http://www.ncbi.nlm.nih.gov/pubmed/27363307 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 4 %N 2 %P e76 %T Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer %A Arvidsson,Susann %A Gilljam,Britt-Mari %A Nygren,Jens %A Ruland,Cornelia Maria %A Nordby-Bøe,Trude %A Svedberg,Petra %+ School of Health and Welfare, Halmstad University, Box 823, Halmstad, SE-301 18, Sweden, 46 35 16 71 00, susann.arvidsson@hh.se %K cancer %K children %K communication %K mobile app %K participation %K validation %D 2016 %7 24.06.2016 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a “traditional” conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym “Si det som det er” or “Tell it how it is”) is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a “voice” in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today. Objective: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer. Methods: A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children’s views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers. Results: Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage. Conclusions: Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels. %M 27343004 %R 10.2196/mhealth.5715 %U http://mhealth.jmir.org/2016/2/e76/ %U https://doi.org/10.2196/mhealth.5715 %U http://www.ncbi.nlm.nih.gov/pubmed/27343004 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 6 %P e164 %T Benefits of Diabetes Self-Management for Health Plan Members: A 6-Month Translation Study %A Lorig,Kate %A Ritter,Philip L %A Turner,Ralph M %A English,Kathleen %A Laurent,Diana D %A Greenberg,Jay %+ Stanford School of Medicine, Stanford University, 1000 Welch Rd., Suite 204, Palo Alto, CA, 94304, United States, 1 650 725 2873, philr@stanford.edu %K patient education %K self-management %K type 2 diabetes %K translation and dissemination %D 2016 %7 24.06.2016 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 27342265 %R 10.2196/jmir.5568 %U http://www.jmir.org/2016/6/e164/ %U https://doi.org/10.2196/jmir.5568 %U http://www.ncbi.nlm.nih.gov/pubmed/27342265 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 6 %P e169 %T If You Build It, Will They Come? Patterns of Internet-Based and Face-To-Face Participation in a Parenting Program for Military Families %A Doty,Jennifer L %A Rudi,Jessie H %A Pinna,Keri L M %A Hanson,Sheila K %A Gewirtz,Abigail H %+ University of Minnesota, Family Social Science, Room 294 McNH, 1985 Buford Ave, St. Paul, MN, 55108, United States, 1 612 624 1475, agewirtz@umn.edu %K parenting %K evidence-based practice %K military %K prevention %K Internet %K interactive media %D 2016 %7 22.06.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Some evidence suggests parents are drawn to media-based interventions over face-to-face interventions, but little is known about the factors associated with parents’ use of Internet-based or Internet-enhanced programs, especially among military families. Research is needed to understand characteristics of parents who may be most likely to use online components or attend face-to-face meetings in order to ensure maximum engagement. Objective: In this study, we examined characteristics that predict various patterns of Internet use and face-to-face attendance in a parenting program designed for military families. Methods: An ecological framework guided analysis of differences in patterns of Internet-based use and face-to-face attendance by parents’ demographic characteristics (gender, education, employment, and child age), incentives offered, and number of months the parent was deployed. We reported differences in the total number of online components completed over the 14 modules, total number of face-to-face sessions attended, and the use of different types of online components accessed (videos, downloadable handouts, mindfulness exercises, knowledge checks, and downloadable summaries). Then, we computed multinomial logistic regression accounting for nestedness (parents within families) to examine associations between demographic, programmatic, and military-related characteristics and patterns of engagement (use of online components and attendance at face-to-face sessions). Results: Just over half (52.2%, 193/370) of the participants used the online components at least once, and the majority of participants (73.2%, 271/370) attended at least 1 face-to-face session. An examination of different patterns of participation revealed that compared with those who participated primarily in face-to-face sessions, parents who participated online but had little face-to-face participation were more likely to have received incentives than those who did not (95% CI 1.9-129.7). Among participants who had been deployed, those who had earned a 4-year degree (95% CI 1.0-2.2) and those who had been offered incentives to participate online (95% CI 2.1-58.6) were more likely to be highly engaged in online components and attend face-to-face compared with those who attended primarily face-to-face. However, those with a high number of months of deployment (95% CI 0.6-1.0) were less likely to be in the pattern of highly engaged in online components and face-to-face attendance. Compared with those who participated primarily face-to-face, deployed mothers were about 4 times more likely to engage in moderate online use with face-to-face attendance than deployed fathers (95% CI 1.21-11.83) and participate primarily online (95% CI 0.77-25.20). Conclusions: Results imply that parents may be drawn to different delivery options of a parenting program (online components vs face-to-face sessions) depending on their education level, incentives to engage in online components, and their military-related experience. Results suggest potential directions for tailoring Internet-based interventions. %M 27334833 %R 10.2196/jmir.4445 %U http://www.jmir.org/2016/6/e169/ %U https://doi.org/10.2196/jmir.4445 %U http://www.ncbi.nlm.nih.gov/pubmed/27334833 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 5 %N 2 %P e106 %T Informing Patients About Placebo Effects: Using Evidence, Theory, and Qualitative Methods to Develop a New Website %A Greville-Harris,Maddy %A Bostock,Jennifer %A Din,Amy %A Graham,Cynthia A %A Lewith,George %A Liossi,Christina %A O’Riordan,Tim %A White,Peter %A Yardley,Lucy %A Bishop,Felicity L %+ Psychology Department, Faculty of Social and Human Sciences, University of Southampton, Building 44, Highfield Campus, Southampton, SO17 1BJ, United Kingdom, 44 2380599020, f.l.bishop@southampton.ac.uk %K placebo effect %K informed consent %K qualitative research %K health attitudes %K consumer health information %D 2016 %7 10.06.2016 %9 Original Paper %J JMIR Res Protoc %G English %X Background: According to established ethical principles and guidelines, patients in clinical trials should be fully informed about the interventions they might receive. However, information about placebo-controlled clinical trials typically focuses on the new intervention being tested and provides limited and at times misleading information about placebos. Objective: We aimed to create an informative, scientifically accurate, and engaging website that could be used to improve understanding of placebo effects among patients who might be considering taking part in a placebo-controlled clinical trial. Methods: Our approach drew on evidence-, theory-, and person-based intervention development. We used existing evidence and theory about placebo effects to develop content that was scientifically accurate. We used existing evidence and theory of health behavior to ensure our content would be communicated persuasively, to an audience who might currently be ignorant or misinformed about placebo effects. A qualitative ‘think aloud’ study was conducted in which 10 participants viewed prototypes of the website and spoke their thoughts out loud in the presence of a researcher. Results: The website provides information about 10 key topics and uses text, evidence summaries, quizzes, audio clips of patients’ stories, and a short film to convey key messages. Comments from participants in the think aloud study highlighted occasional misunderstandings and off-putting/confusing features. These were addressed by modifying elements of content, style, and navigation to improve participants’ experiences of using the website. Conclusions: We have developed an evidence-based website that incorporates theory-based techniques to inform members of the public about placebos and placebo effects. Qualitative research ensured our website was engaging and convincing for our target audience who might not perceive a need to learn about placebo effects. Before using the website in clinical trials, it is necessary to test its effects on key outcomes including patients’ knowledge and capacity for making informed choices about placebos. %M 27288271 %R 10.2196/resprot.5627 %U http://www.researchprotocols.org/2016/2/e106/ %U https://doi.org/10.2196/resprot.5627 %U http://www.ncbi.nlm.nih.gov/pubmed/27288271 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 6 %P e153 %T Primary Care Provider Views About Usefulness and Dissemination of a Web-Based Depression Treatment Information Decision Aid %A Beaulac,Julie %A Westmacott,Robin %A Walker,John R %A Vardanyan,Gohar %A , %+ The Ottawa Hospital, Psychology Department, 501 Smyth Road, Room 7300 General Campus, Ottawa, ON, K1H 8L6, Canada, 1 613 737 8899 ext 75078, jbeaulac@toh.on.ca %K decision aid %K depression %K treatment %K dissemination %D 2016 %7 08.06.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Decisions related to mental health are often complex, problems often remain undetected and untreated, information unavailable or not used, and treatment decisions frequently not informed by best practice or patient preferences. Objective: The objective of this paper was to obtain the opinions of health professionals working in primary health care settings about a Web-based information decision aid (IDA) for patients concerning treatment options for depression and the dissemination of the resources in primary care settings. Methods: Participants were recruited from primary care clinics in Winnipeg and Ottawa, Canada, and included 48 family physicians, nurses, and primary care staff. The study design was a qualitative framework analytic approach of 5 focus groups. Focus groups were conducted during regular staff meetings, were digitally recorded, and transcripts created. Analysis involved a content and theme analysis. Results: Seven key themes emerged including the key role of the primary care provider, common questions about treatments, treatment barriers, sources of patient information, concern about quality and quantity of available information, positive opinions about the IDA, and disseminating the IDA. The most common questions mentioned were about medication and side effects and alternatives to medication. Patients have limited access to alternative treatment options owing to cost and availability. Conclusions: Practitioners evaluated the IDA positively. The resources were described as useful, supportive of providers’ messages, and accessible for patients. There was unanimous consensus that information needs to be available electronically through the Internet. %M 27277709 %R 10.2196/jmir.5458 %U http://www.jmir.org/2016/6/e153/ %U https://doi.org/10.2196/jmir.5458 %U http://www.ncbi.nlm.nih.gov/pubmed/27277709 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 18 %N 6 %P e145 %T Designing Health Websites Based on Users’ Web-Based Information-Seeking Behaviors: A Mixed-Method Observational Study %A Pang,Patrick Cheong-Iao %A Chang,Shanton %A Verspoor,Karin %A Pearce,Jon %+ Health and Biomedical Informatics Centre, The University of Melbourne, Level 1, 202 Berkeley St, Melbourne, 3010, Australia, 61 3 83441583, shanton.chang@unimelb.edu.au %K consumer health information %K public health informatics %K exploratory behavior %K hypermedia %D 2016 %7 06.06.2016 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 27267955 %R 10.2196/jmir.5661 %U http://www.jmir.org/2016/6/e145/ %U https://doi.org/10.2196/jmir.5661 %U http://www.ncbi.nlm.nih.gov/pubmed/27267955 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 6 %P e89 %T “Less Than A Wife”: A Study of Polycystic Ovary Syndrome Content in Teen and Women’s Digital Magazines %A Sanchez,Ninive %A Jones,Hillary %+ School of Social Work, University of Missouri, 712 Clark Hall, Columbia, MO, 65211, United States, 1 573 882 0920, sanchezni@missouri.edu %K polycystic ovary syndrome %K digital magazines %K women's health %K edutainment %D 2016 %7 02.06.2016 %9 Original Paper %J J Med Internet Res %G English %X 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 Español, 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. %M 27255809 %R 10.2196/jmir.5417 %U http://www.jmir.org/2016/6/e89/ %U https://doi.org/10.2196/jmir.5417 %U http://www.ncbi.nlm.nih.gov/pubmed/27255809 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 5 %P e100 %T Readability Analysis of the Package Leaflets for Biological Medicines Available on the Internet Between 2007 and 2013: An Analytical Longitudinal Study %A Piñero-López,María Ángeles %A Modamio,Pilar %A Lastra,Cecilia F %A Mariño,Eduardo L %+ Clinical Pharmacy and Pharmacotherapy Unit, Department of Pharmacy and Pharmaceutical Technology, University of Barcelona, Faculty of Pharmacy, Av. Joan XXIII s/n, Barcelona, 08028, Spain, 34 934024544, emarino@ub.edu %K package leaflet %K readability %K biological medicines %K online health information %D 2016 %7 25.05.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: The package leaflet included in the packaging of all medicinal products plays an important role in the transmission of medicine-related information to patients. Therefore, in 2009, the European Commission published readability guidelines to try to ensure that the information contained in the package leaflet is understood by patients. Objective: The main objective of this study was to calculate and compare the readability levels and length (number of words) of the package leaflets for biological medicines in 2007, 2010, and 2013. Methods: The sample of this study included 36 biological medicine package leaflets that were downloaded from the European Medicines Agency website in three different years: 2007, 2010, and 2013. The readability of the selected package leaflets was obtained using the following readability formulas: SMOG grade, Flesch-Kincaid grade level, and Szigriszt’s perspicuity index. The length (number of words) of the package leaflets was also measured. Afterwards, the relationship between these quantitative variables (three readability indexes and length) and categorical (or qualitative) variables were analyzed. The categorical variables were the year when the package leaflet was downloaded, the package leaflet section, type of medicine, year of authorization of biological medicine, and marketing authorization holder. Results: The readability values of all the package leaflets exceeded the sixth-grade reading level, which is the recommended value for health-related written materials. No statistically significant differences were found between the three years of study in the readability indexes, although differences were observed in the case of the length (P=.002), which increased over the study period. When the relationship between readability indexes and length and the other variables was analyzed, statistically significant differences were found between package leaflet sections (P<.001) and between the groups of medicine only with regard to the length over the three studied years (P=.002 in 2007, P=.007 in 2010, P=.009 in 2013). Linear correlation was observed between the readability indexes (SMOG grade and Flesch-Kincaid grade level: r2=.92; SMOG grade and Szigriszt’s perspicuity index: r2=.81; Flesch-Kincaid grade level and Szigriszt’s perspicuity index: r2=.95), but not between the readability indexes and the length (length and SMOG grade: r2=.05; length and Flesch-Kincaid grade level: r2=.03; length and Szigriszt’s perspicuity index: r2=.02). Conclusions: There was no improvement in the readability of the package leaflets studied between 2007 and 2013 despite the European Commission’s 2009 guideline on the readability of package leaflets. The results obtained from the different readability formulas coincided from a qualitative point of view. Efforts to improve the readability of package leaflets for biological medicines are required to promote the understandability and accessibility of this online health information by patients and thereby contribute to the appropriate use of medicines and medicine safety. %M 27226241 %R 10.2196/jmir.5145 %U http://www.jmir.org/2016/5/e100/ %U https://doi.org/10.2196/jmir.5145 %U http://www.ncbi.nlm.nih.gov/pubmed/27226241 %0 Journal Article %@ 2369-2960 %I Gunther Eysenbach %V 2 %N 1 %P e24 %T Construct Validity of the eHealth Literacy Scale (eHEALS) Among Two Adult Populations: A Rasch Analysis %A Nguyen,Jennifer %A Moorhouse,Michael %A Curbow,Barbara %A Christie,Juliette %A Walsh-Childers,Kim %A Islam,Sabrina %+ Minority Cancer Research and Training (MiCaRT) Center, University of Florida Health Cancer Center, 6550 Sanger Road, Orlando, FL, 32827, United States, 1 4043137109, jennifernguyen@cop.ufl.edu %K eHealth %K eHEALS %K internet %K measurement %K rasch %K public health %D 2016 %7 20.05.2016 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: The Internet has become a ubiquitous venue for information seeking, especially for health information. Public health practitioners have noticed the promise and potential of the Internet, however, little is known about individuals' skills of their eHealth literacy. The eHealth Literacy Scale, eHEALS, was designed to measure perceptions of individuals' eHealth literacy skills. Objective: The objective of the study was to examine the psychometric validity and reliability of the eHEALS with two adult populations using the Rasch Model. Methods: A college-aged sample and an Internet-based sample (Amazon's MTurk) were recruited to complete the eHEALS, demographic questions, and a health literacy scale. Using WINSTEPS and SPSS, unidimensionality, item fit, rating scale, item hierarchy, person ability-item match, and reliability were analyzed, compared, and contrasted against each sample and to other samples found in the literature. Results: An exploratory factor analysis supported unidimensionality in both samples. More than 90% of respondents from both samples fit the model. No items were outright misfitting. Both samples separated into three distinct groups. Conclusions: Based on the results, the eHEALS is a reliable and consistent measurement tool for a college sample and an Internet-based sample. As these individuals are most likely to use the Internet as a health resource, it is necessary to learn and know their skills versus perceiving that they can critically and successfully navigate the Internet. Further analyses are necessary to ensure that the eHEALS can serve as a standard eHealth literacy measure for public health. %M 27244771 %R 10.2196/publichealth.4967 %U http://publichealth.jmir.org/2016/1/e24/ %U https://doi.org/10.2196/publichealth.4967 %U http://www.ncbi.nlm.nih.gov/pubmed/27244771 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 5 %N 2 %P e88 %T A Decision Aid for Women Considering Neoadjuvant Systemic Therapy for Operable Invasive Breast Cancer: Development and Protocol of a Phase II Evaluation Study (ANZ1301 DOMINO) %A Zdenkowski,Nicholas %A Butow,Phyllis %A Hutchings,Elizabeth %A Douglas,Charles %A Coll,Joseph R %A Boyle,Frances M %+ Northern Clinical School, Faculty of Medicine, University of Sydney, Patricia Ritchie Centre for Cancer Care and Research, 25 Rocklands Rd, North Sydney, 2060, Australia, 61 249850134, nick.zdenkowski@newcastle.edu.au %K breast neoplasm %K decision aid %K neoadjuvant %K chemotherapy %K protocol %D 2016 %7 20.05.2016 %9 Protocol %J JMIR Res Protoc %G English %X Background: Neoadjuvant systemic therapy is offered to selected women with large and/or highly proliferative operable breast cancers. This option adds further complexity to an already complex breast cancer treatment decision tree. Patient decision aids are an established method of increasing patient involvement and knowledge while decreasing decisional conflict. There is currently no decision aid available for women considering neoadjuvant systemic therapy. Objective: We aimed to develop a decision aid for women diagnosed with operable breast cancer and considered suitable for neoadjuvant systemic therapy, and the protocol for a multicenter pre-post study evaluating the acceptability and feasibility of the decision aid. Methods: The decision aid was developed through literature review, expert advisory panel, adherence to the International Patient Decision Aid Standards, and iterative review. The protocol for evaluation of the decision aid consists of the following: eligible women will undertake a series of questionnaires prior to and after using the decision aid. The primary endpoint is decision aid acceptability to patients and investigators and the feasibility of use. Secondary endpoints include change in decisional conflict, participant knowledge, and information involvement preference. Feasibility is defined as the proportion of eligible participants who use the decision aid to help inform their treatment decision. Results: This study has recruited 29 out of a planned 50 participants at four Australian sites. A 12-month recruitment period is expected with a further 12-months follow-up. Conclusions: The decision aid has the potential to allow patients with operable breast cancer, who have been offered neoadjuvant systemic therapy, decreased decisional conflict, and greater involvement in the decision. If this study finds that an online decision aid is feasible and acceptable, it will be made widely available for routine clinical practice. Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12614001267640; http://www.anzctr.org.au/TrialSearch.aspx?searchTxt=ACTRN12614001267640&isBasic=True (Archived by WebCite at http://www.webcitation.org/6gh7BPZdG) %M 27207563 %R 10.2196/resprot.5641 %U http://www.researchprotocols.org/2016/2/e88/ %U https://doi.org/10.2196/resprot.5641 %U http://www.ncbi.nlm.nih.gov/pubmed/27207563 %0 Journal Article %@ 2292-9495 %I Gunther Eysenbach %V 3 %N 1 %P e13 %T The Usability of Diabetes MAP: A Web-delivered Intervention for Improving Medication Adherence %A Nelson,Lyndsay A %A Bethune,Magaela C %A Lagotte,Andrea E %A Osborn,Chandra Y %+ Center for Health Behavior and Health Education, Vanderbilt University Medical Center, 2525 West End Ave, Suite 370, Nashville, TN, 37203, United States, 1 615 936 8468, chandra.osborn@vanderbilt.edu %K Website %K Usability Testing %K Type 2 Diabetes Mellitus %K Medication Adherence %K Intervention %D 2016 %7 12.05.2016 %9 Original Paper %J JMIR Human Factors %G English %X Background: Web-delivered interventions are a feasible approach to health promotion. However, if a website is poorly designed, difficult to navigate, and has technical bugs, it will not be used as intended. Usability testing prior to evaluating a website’s benefits can identify barriers to user engagement and maximize future use. Objective: We developed a Web-delivered intervention called Diabetes Medication Adherence Promotion (Diabetes MAP) and used a mixed-methods approach to test its usability prior to evaluating its efficacy on medication adherence and glycemic control in a randomized controlled trial. Methods: We recruited English-speaking adults with type 2 diabetes mellitus (T2DM) from an academic medical center who were prescribed diabetes medications. A trained research assistant administered a baseline survey, collected medical record information, and instructed participants on how to access Diabetes MAP. Participants were asked to use the site independently for 2 weeks and to provide survey and/or focus group feedback on their experience. We analyzed survey data descriptively and qualitative data thematically to identify participants’ favorable and unfavorable experiences, characterize usability concerns, and solicit recommendations for improving Diabetes MAP. Results: Enrolled participants (N=32) were an average of 51.7 ± 11.8 years old, 66% (21/32) female, 60% (19/32) non-Hispanic White, 88% (28/32) had more than 12 years of education, half had household incomes over $50,000, and 78% (25/32) were privately insured. Average duration of diagnosed diabetes was 7.8 ± 6.3 years, average A1c was 7.4 ± 2.0, and 38% (12/32) were prescribed insulin. Of enrolled participants, 91% (29/32) provided survey and/or focus group feedback about Diabetes MAP. On the survey, participants agreed website information was clear and easy to understand, but in focus groups they reported navigational challenges and difficulty overcoming user errors (eg, entering data in an unspecified format). Participants also reported difficulty accessing the site and, once accessed, using all of its features. Participants recommended improving the site’s user interface to facilitate quick, efficient access to all features and content. Conclusions: Adults with T2DM rated the Diabetes MAP website favorably on surveys, but focus groups gave more in-depth feedback on the user experience (eg, difficulty accessing the site, maximizing all of the site’s features and content, and recovering from errors). Appropriate usability testing methods ensure Web-delivered interventions work as intended and any benefits are not diminished by usability challenges. %M 27174496 %R 10.2196/humanfactors.5177 %U http://humanfactors.jmir.org/2016/1/e13/ %U https://doi.org/10.2196/humanfactors.5177 %U http://www.ncbi.nlm.nih.gov/pubmed/27174496 %0 Journal Article %@ 2292-9495 %I Gunther Eysenbach %V 3 %N 1 %P e14 %T The McMaster Optimal Aging Portal: Usability Evaluation of a Unique Evidence-Based Health Information Website %A Barbara,Angela M %A Dobbins,Maureen %A Haynes,R. Brian %A Iorio,Alfonso %A Lavis,John N %A Raina,Parminder %A Levinson,Anthony J %+ Division of e-Learning Innovation, Faculty of Health Sciences, McMaster University, MDCL 3117, 1280 Main Street West, Hamilton, ON,, Canada, 1 905 525 9120 ext 26525, levinsa@mcmaster.ca %K online health information %K health informatics %K elderly %K consumer health information %K qualitative research %K usability testing %K Internet %K evidence-based medicine %K knowledge translation %K aging %K website %D 2016 %7 11.05.2016 %9 Original Paper %J JMIR Human Factors %G English %X Background: Increasingly, older adults and their informal caregivers are using the Internet to search for health-related information. There is a proliferation of health information online, but the quality of this information varies, often based on exaggerated or dramatic findings, and not easily comprehended by consumers. The McMaster Optimal Aging Portal (Portal) was developed to provide Internet users with high-quality evidence about aging and address some of these current limitations of health information posted online. The Portal includes content for health professionals coming from three best-in-class resources (MacPLUS, Health Evidence, and Health Systems Evidence) and four types of content specifically prepared for the general public (Evidence Summaries, Web Resource Ratings, Blog Posts, and Twitter messages). Objective: Our objectives were to share the findings of the usability evaluation of the Portal with particular focus on the content features for the general public and to inform designers of health information websites and online resources for older adults about key usability themes. Methods: Data analysis included task performance during usability testing and qualitative content analyses of both the usability sessions and interviews to identify core themes. Results: A total of 37 participants took part in 33 usability testing sessions and 21 focused interviews. Qualitative analysis revealed common themes regarding the Portal’s strengths and challenges to usability. The strengths of the website were related to credibility, applicability, browsing function, design, and accessibility. The usability challenges included reluctance to register, process of registering, searching, terminology, and technical features. Conclusions: The study reinforced the importance of including end users during the development of this unique, dynamic, evidence-based health information website. The feedback was applied to iteratively improve website usability. Our findings can be applied by designers of health-related websites. %M 27170443 %R 10.2196/humanfactors.4800 %U http://humanfactors.jmir.org/2016/1/e14/ %U https://doi.org/10.2196/humanfactors.4800 %U http://www.ncbi.nlm.nih.gov/pubmed/27170443 %0 Journal Article %@ 2291-5222 %I JMIR Publications Inc. %V 4 %N 2 %P e36 %T Parent Use and Efficacy of a Self-Administered, Tablet-Based Parent Training Intervention: A Randomized Controlled Trial %A Breitenstein,Susan M %A Fogg,Louis %A Ocampo,Edith V %A Acosta,Diana I %A Gross,Deborah %+ Rush University, College of Nursing, 600 S. Paulina Street, Chicago, IL, , United States, 1 312 942 6259, susan_m_breitenstein@rush.edu %K Internet, intervention, mobile app, mobile health, parenting, prevention %D 2016 %7 20.04.2016 %9 Original Paper %J JMIR mHealth uHealth %G English %X Background: Parent training programs are traditionally delivered in face-to-face formats and require trained facilitators and weekly parent attendance. Implementing face-to-face sessions is challenging in busy primary care settings and many barriers exist for parents to attend these sessions. Tablet-based delivery of parent training offers an alternative to face-to-face delivery to make parent training programs easier to deliver in primary care settings and more convenient and accessible to parents. We adapted the group-based Chicago Parent Program (CPP) to be delivered as a self-administered, tablet-based program called the ezParent program. Objective: The purpose of this study was to (1) assess the feasibility of the ezParent program by examining parent satisfaction with the program and the percent of modules completed, (2) test the efficacy of the ezParent program by examining the effects compared with a control condition for improving parenting and child behavior in a sample of low-income ethnic minority parents of young children recruited from a primary care setting, and (3) compare program completion and efficacy with prior studies of the group-based CPP. Methods: The study used a two-group randomized controlled trial (RCT) design with repeated measures follow up. Subjects (n=79) were randomly assigned to an intervention or attention control condition. Data collection was at baseline and 12 and 24 weeks post baseline. Parents were recruited from a large, urban, primary care pediatric clinic. ezParent module completion was calculated as the percentage of the six modules completed by the intervention group parents. Attendance in the group-based CPP was calculated as the percentage of attendance at sessions 1 through 10. Satisfaction data were summarized using item frequencies. Parent and child data were analyzed using a repeated measures analysis of variance (RM-ANOVA) with simple contrasts to determine if there were significant intervention effects on the outcome measures. Effect sizes for between group comparisons were calculated for all outcome variables and compared with CPP group based archival data. Results: ezParent module completion rate was 85.4% (34.2/40; 95% confidence interval [CI] = 78.4%-93.7%) and was significantly greater (P<.05) than face-to-face CPP group attendance (135.2/267, 50.6%) attendance of sessions; 95% CI = 46.8%-55.6%). ezParent participants reported the program as very helpful (35/40, 88.0%) and they would highly recommend the program (33/40, 82.1%) to another parent. ezParent participants showed greater improvements in parenting warmth (F1,77 = 4.82, P<.05) from time 1 to 3. No other significant differences were found. Cohen’s d effect sizes for intervention group improvements in parenting warmth, use of corporal punishment, follow through, parenting stress, and intensity of child behavior problems were comparable or greater than those of the group-based CPP. Conclusions: Data from this study indicate the feasibility and acceptability of the ezParent program in a low-income, ethnic minority population of parents and comparable effect sizes with face-to-face delivery for parents. %M 27098111 %R 10.2196/mhealth.5202 %U http://mhealth.jmir.org/2016/2/e36/ %U https://doi.org/10.2196/mhealth.5202 %U http://www.ncbi.nlm.nih.gov/pubmed/27098111 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 2 %N 1 %P e18 %T Exploring the Feasibility and Potential of Virtual Panels for Soliciting Feedback on Nutrition Education Materials: A Proof-of-Concept Study %A Norman,Cameron D %A Haresign,Helen %A Mehling,Christine %A Bloomberg,Honey %+ Cense Research + Design, 757-155 Dalhousie Street, Toronto, ON, M5B 2P7, Canada, 1 4168543805, cdnorman@cense.ca %K health communications %K Facebook %K marketing %K nutrition %K nutrition education %K healthy eating %K health education %K design %K study design %K social media %K user design %K qualitative data %K health promotion %K public health %D 2016 %7 19.04.2016 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: A changing and cluttered information landscape has put pressure on health organizations to produce consumer information materials that are not only factual but high quality and engaging to audiences. User-centered design methods can be useful in obtaining feedback from consumers; however, they are labor intensive and slow, which is not responsive to the fast-paced communication landscape influenced by social media. EatRight Ontario (ERO), a provincial nutrition and health support program of Dietitians of Canada, develops evidence-based resources for consumers and sought to increase user-centered design activities by exploring whether the standard approach to feedback could be replicated online. While online feedback has been used in marketing research, few examples are available in health promotion and public health to guide programming and policy. Objective: This study compared a traditional in-person approach for recruitment and feedback using paper surveys with an Internet-based approach using Facebook as a recruitment tool and collecting user feedback via the Web. The purpose of the proof-of-concept study was to explore the feasibility of the approach and compare an online versus traditional approach in terms of recruitment issues and response. Methods: An exploratory, two-group comparative trial was conducted using a convenience and purposive sampling. Participants reviewed a handout on healthy eating and then completed an 18-item survey with both forced-choice items and open-ended responses. One group viewed a hard-copy prototype and completed a paper survey and the other viewed a PDF prototype via Web links and completed a Web survey. The total days required to fulfill the sample for each group were used as the primary method of efficiency calculation. Results: In total, 44 participants (22 per condition) completed the study, consisting of 42 women and 2 men over the age of 18. Few significant differences were detected between the groups. Statistically significant (P≤.05) differences were detected on four attitudinal variables related to the document reviewed and include perceived length of the document, perceived attractiveness, likelihood of contacting ERO for food and nutrition questions in the future, and likelihood of recommending ERO to a friend. In all cases, the responses were more favorable to the document or ERO with the online group. All other variables showed no difference between them. A content review of the qualitative feedback found relative consistency in word use and number of words used, indicating relative parity in the amount of data generated between conditions. The online condition achieved its sampling target in 9 days, while the in-person method took 79 days to achieve the target. Conclusions: An online process of recruitment through Facebook and solicitation of online feedback is a feasible model that yields comparable response levels to in-person methods for user feedback. The online approach appears to be a faster and less resource-intensive approach than traditional in-person methods for feedback generation. %M 27227153 %R 10.2196/publichealth.5134 %U http://publichealth.jmir.org/2016/1/e18/ %U https://doi.org/10.2196/publichealth.5134 %U http://www.ncbi.nlm.nih.gov/pubmed/27227153 %0 Journal Article %@ 1929-073X %I JMIR Publications Inc. %V 5 %N 2 %P e10 %T YouTube Videos to Create a “Virtual Hospital Experience” for Hip and Knee Replacement Patients to Decrease Preoperative Anxiety: A Randomized Trial %A O'Connor,Mary I %A Brennan,Katharyn %A Kazmerchak,Shari %A Pratt,Jason %+ Center for Musculoskeletal Care, Department of Orthopaedics and Rehabilitation, Yale School of Medicine, 1450 Chapel Street, Selina Lewis 4th Floor, New Haven, CT, 06511, United States, 1 203 789 4378, mary.oconnor@yale.edu %K hip arthroplasty %K hip replacement %K knee arthroplasty %K knee replacement %K preoperative anxiety %K virtual hospital experience %K YouTube videos %D 2016 %7 18.04.2016 %9 Original Paper %J Interact J Med Res %G English %X 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). %M 27091674 %R 10.2196/ijmr.4295 %U http://www.i-jmr.org/2016/2/e10/ %U https://doi.org/10.2196/ijmr.4295 %U http://www.ncbi.nlm.nih.gov/pubmed/27091674 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 5 %N 2 %P e47 %T Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal %A Schaller,Sandra %A Marinova-Schmidt,Velislava %A Setzer,Manuela %A Kondylakis,Haridimos %A Griebel,Lena %A Sedlmayr,Martin %A Graessel,Elmar %A Maler,Juan Manuel %A Kirn,Stefan %A Kolominsky-Rabas,Peter L %+ Interdisciplinary Centre for Health Technology Assessment (HTA) and Public Health, Friedrich-Alexander-University of Erlangen-Nürnberg, Schwabachanlage 6, Erlangen, 91054, Germany, 49 9131 8534167, sandra.schaller@uk-erlangen.de %K eHealth %K web portal %K decision aid %K personalized support %K dementia %K Alzheimer’s disease %K informal caregiver %K medical professional %D 2016 %7 05.04.2016 %9 Original Paper %J JMIR Res Protoc %G English %X Background: The European eHealthMonitor project (eHM) developed a user-sensitive and interactive Web portal for the dementia care setting called the eHM Dementia Portal (eHM-DP). It aims to provide targeted support for informal caregivers of persons with dementia and professionals. Objective: The objective of this study was to assess the usefulness and impact of the eHM-DP service in the dementia care setting from two user perspectives: informal caregivers and professionals. Methods: The evaluation study was conducted from June to September 2014 and followed a before-after, user-participatory, mixed-method design with questionnaires and interviews. The used intervention was the eHM-DP: an interactive Web portal for informal caregivers and professionals that was tested for a 12-week period. Primary outcomes for caregivers included empowerment, quality of life, caregiver burden, decision aid, as well as perceived usefulness and benefits of the eHM-DP. Primary outcomes for professionals involved decision aid, perceived usefulness, and benefits of the eHM-DP. Results: A total of 25 informal caregivers and 6 professionals used the eHM-DP over the 12-week study period. Both professionals and informal caregivers indicated perceived benefits and support by the eHM-DP. In total, 65% (16/25) of informal caregivers would use the eHM-DP if they had access to it. Major perceived benefits were individualized information acquisition, improved interaction between informal caregivers and professionals, access to support from home, and empowerment in health-related decisions (PrepDM Score: 67.9). Professionals highlighted the improved treatment and care over the disease course (83%, 5/6) and improved health care access for people living in rural areas (67%, 4/6). However, there was no improvement in caregiver burden (Burden Scale for Family Caregivers) and quality of life (EuroQol-5D-5L) over the study period. Conclusions: Our study provides insight into the different user perspectives on an eHealth support service in the dementia treatment and care setting. These results are of importance for future developments and the uptake of eHealth solutions in the dementia domain and reinforce the importance of early user involvement. Turning to the primary target of the eHM-DP service, our findings suggest that the eHM-DP service proved to be a valuable post-diagnostic support service, in particular for the home-based care setting. Further research on a larger scale is needed to enhance the implementation in existing health care infrastructures. %M 27050401 %R 10.2196/resprot.4354 %U http://www.researchprotocols.org/2016/2/e47/ %U https://doi.org/10.2196/resprot.4354 %U http://www.ncbi.nlm.nih.gov/pubmed/27050401 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 3 %P e67 %T 100 Million Views of Electronic Cigarette YouTube Videos and Counting: Quantification, Content Evaluation, and Engagement Levels of Videos %A Huang,Jidong %A Kornfield,Rachel %A Emery,Sherry L %+ Health Media Collaboratory, Institute for Health Research and Policy, University of Illinois at Chicago, 1747 West Roosevelt Road, Chicago, IL, 60608, United States, 1 312 355 0195, jhuang12@uic.edu %K electronic cigarettes %K electronic nicotine delivery systems %K ENDS %K tobacco products %K YouTube %K social media %D 2016 %7 18.03.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: The video-sharing website, YouTube, has become an important avenue for product marketing, including tobacco products. It may also serve as an important medium for promoting electronic cigarettes, which have rapidly increased in popularity and are heavily marketed online. While a few studies have examined a limited subset of tobacco-related videos on YouTube, none has explored e-cigarette videos’ overall presence on the platform. Objective: To quantify e-cigarette-related videos on YouTube, assess their content, and characterize levels of engagement with those videos. Understanding promotion and discussion of e-cigarettes on YouTube may help clarify the platform’s impact on consumer attitudes and behaviors and inform regulations. Methods: Using an automated crawling procedure and keyword rules, e-cigarette-related videos posted on YouTube and their associated metadata were collected between July 1, 2012, and June 30, 2013. Metadata were analyzed to describe posting and viewing time trends, number of views, comments, and ratings. Metadata were content coded for mentions of health, safety, smoking cessation, promotional offers, Web addresses, product types, top-selling brands, or names of celebrity endorsers. Results: As of June 30, 2013, approximately 28,000 videos related to e-cigarettes were captured. Videos were posted by approximately 10,000 unique YouTube accounts, viewed more than 100 million times, rated over 380,000 times, and commented on more than 280,000 times. More than 2200 new videos were being uploaded every month by June 2013. The top 1% of most-viewed videos accounted for 44% of total views. Text fields for the majority of videos mentioned websites (70.11%); many referenced health (13.63%), safety (10.12%), smoking cessation (9.22%), or top e-cigarette brands (33.39%). The number of e-cigarette-related YouTube videos was projected to exceed 65,000 by the end of 2014, with approximately 190 million views. Conclusions: YouTube is a major information-sharing platform for electronic cigarettes. YouTube appears to be used unevenly for promotional purposes by e-cigarette brands, and our analyses indicated a high level of user engagement with a small subset of content. There is evidence that YouTube videos promote e-cigarettes as cigarette smoking cessation tools. Presence and reach of e-cigarette videos on YouTube warrants attention from public health professionals and policymakers. %M 26993213 %R 10.2196/jmir.4265 %U http://www.jmir.org/2016/3/e67/ %U https://doi.org/10.2196/jmir.4265 %U http://www.ncbi.nlm.nih.gov/pubmed/26993213 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 3 %P e64 %T Does Digital Ad Exposure Influence Information-Seeking Behavior Online? Evidence From the 2012 Tips From Former Smokers National Tobacco Prevention Campaign %A Kim,Annice %A Hansen,Heather %A Duke,Jennifer %A Davis,Kevin %A Alexander,Robert %A Rowland,Amy %A Mitchko,Jane %+ RTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, , United States, 1 919 316 3972, akim@rti.org %K tobacco cessation %K health %K Internet %K monitoring and evaluation %D 2016 %7 16.03.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Measuring the impact of online health campaigns is challenging. Ad click-through rates are traditionally used to measure campaign reach, but few Internet users ever click on ads. Alternatively, self-reported exposure to digital ads would be prone to recall bias. Furthermore, there may be latency effects whereby people do not click on ads when exposed but visit the promoted website or conduct campaign-related searches later. Online panels that unobtrusively collect panelists’ Web behavior data and link ad exposure to website visits and searches can more reliably assess the impact of digital ad exposure. From March to June 2012, the Centers for Disease Control and Prevention aired the national Tips From Former Smokers (Tips 2012) media campaign designed to encourage current smokers to quit. Advertisements ran across media channels, and the digital ads directed users to the Tips 2012 campaign website. Objective: Our aim was to examine whether exposure to Tips 2012 digital ads influenced information-seeking behaviors online. Methods: ComScore mined its panelists’ Web behavior data for unique codes that would indicate exposure to Tips 2012 ads, regardless of whether panelists clicked the ad or not. A total of 15,319 US adults were identified as having been exposed to a Tips 2012 campaign ad. An equal number of unexposed adults (N=15,319) were identified and matched on demographics and Internet use behavior to the exposed group. Panelists’ Web behavior data were mined for up to 4 weeks after initial Tips 2012 ad exposure to determine whether they visited the Tips 2012 campaign website or other cessation-related websites (eg, nicotine replacement therapy site) or conducted searches for campaign-related topics (eg, quit smoking). Results: The proportion of exposed adults visiting the Tips 2012 sites increased from 0.4% in Week 1 to 0.9% 4 weeks after ad exposure, and these rates were significantly higher than in the unexposed group (0.1% in Week 1 to 0.4% in Week 4, P<.001) across all weeks examined. The proportion of exposed panelists visiting other cessation websites increased from 0.2% in Week 1 to 0.3% 4 weeks after initial ad exposure, and these rates were significantly higher than in the unexposed group (0.0% in Week 1 to 0.2% in Week 4, P=.001 to P=.019) across all weeks examined. There were no significant differences in searches for campaign-related topics between the exposed and unexposed group during most of the weeks examined. Conclusions: These results suggest that online ad exposure is associated with confirmed visits to the Tips 2012 campaign sites and visits to other cessation websites and that these information-seeking behaviors occur up to several weeks after ad exposure. Web behavior data from online panels are useful for examining exposure and behavioral responses to digital campaign ads. %M 26983849 %R 10.2196/jmir.4299 %U http://www.jmir.org/2016/3/e64/ %U https://doi.org/10.2196/jmir.4299 %U http://www.ncbi.nlm.nih.gov/pubmed/26983849 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 3 %P e57 %T Health-Related Internet Use by Informal Caregivers of Children and Adolescents: An Integrative Literature Review %A Park,Eunhee %A Kim,Heejung %A Steinhoff,Andreanna %+ Yonsei University, College of Nursing Room 614, 50-1 Yonsei-ro, seodaemun-gu, Seoul, , Republic Of Korea, 82 2 2228 3273 ext 8, hkim80@yuhs.ac %K Internet %K caregivers %K children %K adolescent %K eHealth %K consumer health information %D 2016 %7 03.03.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Internet-based health resources can support informal caregivers who are caring for children or adolescents with health care needs. However, few studies discriminate informal caregivers’ needs from those of their care recipients or those of people caring for adults. Objective: This study reviews the literature of health-related Internet use among informal caregivers of children and adolescents. Methods: A total of 17 studies were selected from literature searches conducted in 6 electronic databases: PubMed, Cochrane, CINAHL, PsycINFO, ERIC, and EMBASE. All databases searches were limited to articles published in the years 2004 to 2014 in peer-reviewed publications. Search terms consisted of “health-related Internet use,” “eHealth,” “Internet use for health-related purpose(s),” “Web-based resource(s),” and “online resources,” combined with informal caregiver (or “parents”) of “child,” “adolescent,” “student,” “youth,” and “teen.” The age range of the children receiving care was limited to younger than 22 years. Their informal caregivers were defined as persons (parents) who provided unpaid care or assistance to a child or an adolescent with health problems. Results: Among 17 empirical studies, the majority of informal caregivers of children with medical issues were the parents. Quantitative studies (14/17, 77%) reported prevalence and predictors of health-related Internet use, while mixed-methods and qualitative studies (3/17, 24%) investigated informal caregiver perceptions of helpful health-related Internet use and barriers of use. The prevalence of health-related Internet use varied (11%-90%) dependent upon how health-related Internet use was operationalized and measured. Disease-specific information was used for decision making about treatment, while social support via virtual communities and email were used for informal caregiver emotional needs. A digital divide of Internet access was identified in lower educated minorities. Most studies had methodological challenges resulting from convenience sampling, cross-sectional surveys, lack of theoretical frameworks, or no clear definitions of health-related Internet use. Conclusions: This study provides an important understanding of how family members use Internet-based information and support systems during child caregiving. Healthcare providers and policy makers should integrate family needs into their current practices and policies. Further rigorous research is required to design efficient and effective nursing interventions. %M 26940750 %R 10.2196/jmir.4124 %U http://www.jmir.org/2016/3/e57/ %U https://doi.org/10.2196/jmir.4124 %U http://www.ncbi.nlm.nih.gov/pubmed/26940750 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 2 %P e43 %T Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health Records %A Schneider,Hanna %A Hill,Susan %A Blandford,Ann %+ UCLIC & Institute of Digital Health, UCL, Gower Street, London, WC1E 6BT, United Kingdom, 44 203 108 7049, a.blandford@ucl.ac.uk %K electronic health record %K patient empowerment %K self-determination theory %D 2016 %7 24.02.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease. Objective: This study set out to investigate patient families’ lived experiences of working with a PCEHR. Methods: We conducted a semistructured qualitative field study with patient families and clinicians at a children’s hospital in the UK that uses a PCEHR (Patients Know Best). All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (eg, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach to avoidance oriented, and proposes that patients’ information needs depend on their style. Results: We identified 3 groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach oriented, highly motivated to use PCEHR), and the 3 groups as collaborating (approach oriented, motivated to use PCEHR), cooperating (avoidance oriented, less motivated to use PCEHR), and avoiding (very avoidance oriented, not motivated to use PCEHR). Conclusions: The PCEHR met the needs of controller and collaborators better than the needs of cooperators and avoiders. We draw on the Self-Determination Theory to propose ways in which a PCEHR design might better meet the needs of avoidance-oriented users. Further, we highlight the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control, based on effective training, ease of use, comprehensibility of data security mechanisms, timely information provision (recognizing people’s different needs), personalization of use, and easy engagement with clinicians through the PCEHR. %M 26912201 %R 10.2196/jmir.4652 %U http://www.jmir.org/2016/2/e43/ %U https://doi.org/10.2196/jmir.4652 %U http://www.ncbi.nlm.nih.gov/pubmed/26912201 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 2 %P e33 %T Fair Balance and Adequate Provision in Direct-to-Consumer Prescription Drug Online Banner Advertisements: A Content Analysis %A Adams,Crystal %+ University of Miami, 5202 University Drive, Merrick Building, Room 120, Coral Gables, FL, United States, 1 305 284 6133, c.adams1@miami.edu %K direct-to-consumer advertising %K prescription drugs %K Internet %K pharmaceutical policy %K United States Food and Drug Administration %D 2016 %7 18.02.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: The current direct-to-consumer advertising (DTCA) guidelines were developed with print, television, and radio media in mind, and there are no specific guidelines for online banner advertisements. Objective: This study evaluates how well Internet banner ads comply with existing Food and Drug Administration (FDA) guidelines for DTCA in other media. Methods: A content analysis was performed of 68 banner advertisements. A coding sheet was developed based on (1) FDA guidance documents for consumer-directed prescription drug advertisements and (2) previous DTCA content analyses. Specifically, the presence of a brief summary detailing the drug’s risks and side effects or of a “major statement” identifying the drug’s major risks, and the number and type of provisions made available to consumers for comprehensive information about the drug were coded. In addition, the criterion of “fair balance,” the FDA’s requirement that prescription drug ads balance information relating to the drug’s risks with information relating to its benefits, was measured by numbering the benefit and risk facts identified in the ads and by examining the presentation of risk and benefit information. Results: Every ad in the sample included a brief summary of risk information and at least one form of adequate provision as required by the FDA for broadcast ads that do not give audiences a brief summary of a drug’s risks. No ads included a major statement. There were approximately 7.18 risk facts for every benefit fact. Most of the risks (98.85%, 1292/1307) were presented in the scroll portion of the ad, whereas most of the benefits (66.5%, 121/182) were presented in the main part of the ad. Out of 1307 risk facts, 1292 were qualitative and 15 were quantitative. Out of 182 benefit facts, 181 were qualitative and 1 was quantitative. The majority of ads showed neutral images during the disclosure of benefit and risk facts. Only 9% (6/68) of the ads displayed positive images and none displayed negative images when presenting risks facts. When benefit facts were being presented, 7% (5/68) showed only positive images. No ads showed negative images when the benefit facts were being presented. Conclusions: In the face of ambiguous regulatory guidelines for online banner promotion, drug companies appear to make an attempt to adapt to regulatory guidelines designed for traditional media. However, banner ads use various techniques of presentation to present the advertised drug in the best possible light. The FDA should formalize requirements that drug companies provide a brief summary and include multiple forms of adequate provision in banner ads. %M 26892749 %R 10.2196/jmir.5182 %U http://www.jmir.org/2016/2/e33/ %U https://doi.org/10.2196/jmir.5182 %U http://www.ncbi.nlm.nih.gov/pubmed/26892749 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 2 %P e39 %T Association Between Media Dose, Ad Tagging, and Changes in Web Traffic for a National Tobacco Education Campaign: A Market-Level Longitudinal Study %A Shafer,Paul R %A Davis,Kevin C %A Patel,Deesha %A Rodes,Robert %A Beistle,Diane %+ Center for Health Policy Science and Tobacco Research, RTI International, 3040 East Cornwallis Road, Research Triangle Park, NC, 27709, United States, 1 919 260 2711, pshafer@rti.org %K Internet %K advertising %K health communication %K smoking cessation %K public health %K tobacco control %D 2016 %7 17.02.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: In 2012, the US Centers for Disease Control and Prevention (CDC) launched Tips From Former Smokers (Tips), the first federally funded national tobacco education campaign. In 2013, a follow-up Tips campaign aired on national cable television networks, radio, and other channels, with supporting digital advertising to drive traffic to the Tips campaign website. Objective: The objective of this study was to use geographic and temporal variability in 2013 Tips campaign television media doses and ad tagging to evaluate changes in traffic to the campaign website in response to specific doses of campaign media. Methods: Linear regression models were used to estimate the dose-response relationship between weekly market-level television gross rating points (GRPs) and weekly Web traffic to the Tips campaign website. This relationship was measured using unique visitors, total visits, and page views as outcomes. Ad GRP effects were estimated separately for ads tagged with the Tips campaign website URL and 1-800-QUIT-NOW. Results: In the average media market, an increase of 100 television GRPs per week for ads tagged with the Tips campaign website URL was associated with an increase of 650 unique visitors (P<.001), 769 total visits (P<.001), and 1255 total page views (P<.001) per week. The associations between GRPs for ads tagged with 1-800-QUIT-NOW and each Web traffic measure were also statistically significant (P<.001), but smaller in magnitude. Conclusions: Based on these findings, we estimate that the 16-week 2013 Tips television campaign generated approximately 660,000 unique visitors, 900,000 total visits, and 1,390,000 page views for the Tips campaign website. These findings can help campaign planners forecast the likely impact of targeted advertising efforts on consumers’ use of campaign-specific websites. %M 26887959 %R 10.2196/jmir.5343 %U http://www.jmir.org/2016/2/e39/ %U https://doi.org/10.2196/jmir.5343 %U http://www.ncbi.nlm.nih.gov/pubmed/26887959 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 18 %N 1 %P e20 %T Features of Computer-Based Decision Aids: Systematic Review, Thematic Synthesis, and Meta-Analyses %A Syrowatka,Ania %A Krömker,Dörthe %A Meguerditchian,Ari N %A Tamblyn,Robyn %+ Clinical and Health Informatics Research Group, McGill University, 1140 Pine Avenue West, Montreal, QC, H3A1A3, Canada, 1 514 934 1934 ext 32999, anna.syrowatka@mail.mcgill.ca %K computers %K decision making %K decision support systems, clinical %K internet %K medical informatics %K patient participation %K patient preference %K patients %D 2016 %7 26.01.2016 %9 Original Paper %J J Med Internet Res %G English %X Background: Patient information and education, such as decision aids, are gradually moving toward online, computer-based environments. Considerable research has been conducted to guide content and presentation of decision aids. However, given the relatively new shift to computer-based support, little attention has been given to how multimedia and interactivity can improve upon paper-based decision aids. Objective: The first objective of this review was to summarize published literature into a proposed classification of features that have been integrated into computer-based decision aids. Building on this classification, the second objective was to assess whether integration of specific features was associated with higher-quality decision making. Methods: Relevant studies were located by searching MEDLINE, Embase, CINAHL, and CENTRAL databases. The review identified studies that evaluated computer-based decision aids for adults faced with preference-sensitive medical decisions and reported quality of decision-making outcomes. A thematic synthesis was conducted to develop the classification of features. Subsequently, meta-analyses were conducted based on standardized mean differences (SMD) from randomized controlled trials (RCTs) that reported knowledge or decisional conflict. Further subgroup analyses compared pooled SMDs for decision aids that incorporated a specific feature to other computer-based decision aids that did not incorporate the feature, to assess whether specific features improved quality of decision making. Results: Of 3541 unique publications, 58 studies met the target criteria and were included in the thematic synthesis. The synthesis identified six features: content control, tailoring, patient narratives, explicit values clarification, feedback, and social support. A subset of 26 RCTs from the thematic synthesis was used to conduct the meta-analyses. As expected, computer-based decision aids performed better than usual care or alternative aids; however, some features performed better than others. Integration of content control improved quality of decision making (SMD 0.59 vs 0.23 for knowledge; SMD 0.39 vs 0.29 for decisional conflict). In contrast, tailoring reduced quality of decision making (SMD 0.40 vs 0.71 for knowledge; SMD 0.25 vs 0.52 for decisional conflict). Similarly, patient narratives also reduced quality of decision making (SMD 0.43 vs 0.65 for knowledge; SMD 0.17 vs 0.46 for decisional conflict). Results were varied for different types of explicit values clarification, feedback, and social support. Conclusions: Integration of media rich or interactive features into computer-based decision aids can improve quality of preference-sensitive decision making. However, this is an emerging field with limited evidence to guide use. The systematic review and thematic synthesis identified features that have been integrated into available computer-based decision aids, in an effort to facilitate reporting of these features and to promote integration of such features into decision aids. The meta-analyses and associated subgroup analyses provide preliminary evidence to support integration of specific features into future decision aids. Further research can focus on clarifying independent contributions of specific features through experimental designs and refining the designs of features to improve effectiveness. %M 26813512 %R 10.2196/jmir.4982 %U http://www.jmir.org/2016/1/e20/ %U https://doi.org/10.2196/jmir.4982 %U http://www.ncbi.nlm.nih.gov/pubmed/26813512 %0 Journal Article %@ 2291-9694 %I Gunther Eysenbach %V 4 %N 1 %P e1 %T The Impact of Information Technology on Patient Engagement and Health Behavior Change: A Systematic Review of the Literature %A Sawesi,Suhila %A Rashrash,Mohamed %A Phalakornkule,Kanitha %A Carpenter,Janet S %A Jones,Josette F %+ School of Informatics and Computing – Indianapolis, Department of BioHealth Informatics, IUPUI, Walker Plaza (WK) 120, 719 Indiana Avenue, Indianapolis, IN, 46202, United States, 1 317 274 8059, ssawesi@umail.iu.edu %K patient engagement %K patient behavior %K technology %K Internet %K web-based %K cell phone %K social media %D 2016 %7 21.01.2016 %9 Original Paper %J JMIR Med Inform %G English %X 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. %M 26795082 %R 10.2196/medinform.4514 %U http://medinform.jmir.org/2016/1/e1/ %U https://doi.org/10.2196/medinform.4514 %U http://www.ncbi.nlm.nih.gov/pubmed/26795082 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 12 %P e288 %T Consumer Use of “Dr Google”: A Survey on Health Information-Seeking Behaviors and Navigational Needs %A Lee,Kenneth %A Hoti,Kreshnik %A Hughes,Jeffery David %A Emmerton,Lynne M %+ Curtin University, School of Pharmacy, Curtin University, GPO Box U1987, Perth, 6845, Australia, 61 892667352, lynne.emmerton@curtin.edu.au %K online %K health information %K health literacy %K patient activation %K information seeking %K information needs %K Internet %K chronic disease %K patients %K survey %D 2015 %7 29.12.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: The Internet provides a platform to access health information and support self-management by consumers with chronic health conditions. Despite recognized barriers to accessing Web-based health information, there is a lack of research quantitatively exploring whether consumers report difficulty finding desired health information on the Internet and whether these consumers would like assistance (ie, navigational needs). Understanding navigational needs can provide a basis for interventions guiding consumers to quality Web-based health resources. Objective: We aimed to (1) estimate the proportion of consumers with navigational needs among seekers of Web-based health information with chronic health conditions, (2) describe Web-based health information-seeking behaviors, level of patient activation, and level of eHealth literacy among consumers with navigational needs, and (3) explore variables predicting navigational needs. Methods: A questionnaire was developed based on findings from a qualitative study on Web-based health information-seeking behaviors and navigational needs. This questionnaire also incorporated the eHealth Literacy Scale (eHEALS; a measure of self-perceived eHealth literacy) and PAM-13 (a measure of patient activation). The target population was consumers of Web-based health information with chronic health conditions. We surveyed a sample of 400 Australian adults, with recruitment coordinated by Qualtrics. This sample size was required to estimate the proportion of consumers identified with navigational needs with a precision of 4.9% either side of the true population value, with 95% confidence. A subsample was invited to retake the survey after 2 weeks to assess the test-retest reliability of the eHEALS and PAM-13. Results: Of 514 individuals who met our eligibility criteria, 400 (77.8%) completed the questionnaire and 43 participants completed the retest. Approximately half (51.3%; 95% CI 46.4-56.2) of the population was identified with navigational needs. Participants with navigational needs appeared to look for more types of health information on the Internet and from a greater variety of information sources compared to participants without navigational needs. However, participants with navigational needs were significantly less likely to have high levels of eHealth literacy (adjusted odds ratio=0.83, 95% CI 0.78-0.89, P<.001). Age was also a significant predictor (P=.02). Conclusions: Approximately half of the population of consumers of Web-based health information with chronic health conditions would benefit from support in finding health information on the Internet. Despite the popularity of the Internet as a source of health information, further work is recommended to maximize its potential as a tool to assist self-management in consumers with chronic health conditions. %M 26715363 %R 10.2196/jmir.4345 %U http://www.jmir.org/2015/12/e288/ %U https://doi.org/10.2196/jmir.4345 %U http://www.ncbi.nlm.nih.gov/pubmed/26715363 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 12 %P e286 %T Is There a Weekly Pattern for Health Searches on Wikipedia and Is the Pattern Unique to Health Topics? %A Gabarron,Elia %A Lau,Annie YS %A Wynn,Rolf %+ Norwegian Centre for E-health Research, University Hospital of North Norway, Sykehusvegen 23, Tromsø, 9019, Norway, 47 94863460, elia.gabarron@telemed.no %K information-seeking behavior %K health information–seeking behavior %K periodicity %K Wikipedia %K chlamydia %K gonorrhea %K HIV %K AIDS %K influenza %K diabetes %D 2015 %7 22.12.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Online health information–seeking behaviors have been reported to be more common at the beginning of the workweek. This behavior pattern has been interpreted as a kind of “healthy new start” or “fresh start” due to regrets or attempts to compensate for unhealthy behavior or poor choices made during the weekend. However, the observations regarding the most common health information–seeking day were based only on the analyses of users’ behaviors with websites on health or on online health-related searches. We wanted to confirm if this pattern could be found in searches of Wikipedia on health-related topics and also if this search pattern was unique to health-related topics or if it could represent a more general pattern of online information searching—which could be of relevance even beyond the health sector. Objective: The aim was to examine the degree to which the search pattern described previously was specific to health-related information seeking or whether similar patterns could be found in other types of information-seeking behavior. Methods: We extracted the number of searches performed on Wikipedia in the Norwegian language for 911 days for the most common sexually transmitted diseases (chlamydia, gonorrhea, herpes, human immunodeficiency virus [HIV], and acquired immune deficiency syndrome [AIDS]), other health-related topics (influenza, diabetes, and menopause), and 2 nonhealth-related topics (footballer Lionel Messi and pop singer Justin Bieber). The search dates were classified according to the day of the week and ANOVA tests were used to compare the average number of hits per day of the week. Results: The ANOVA tests showed that the sexually transmitted disease queries had their highest peaks on Tuesdays (P<.001) and the fewest searches on Saturdays. The other health topics also showed a weekly pattern, with the highest peaks early in the week and lower numbers on Saturdays (P<.001). Footballer Lionel Messi had the highest mean number of hits on Tuesdays and Wednesdays, whereas pop singer Justin Bieber had the most hits on Tuesdays. Both these tracked search queries also showed significantly lower numbers on Saturdays (P<.001). Conclusions: Our study supports prior studies finding an increase in health information searching at the beginning of the workweek. However, we also found a similar pattern for 2 randomly chosen nonhealth-related terms, which may suggest that the search pattern is not unique to health-related searches. The results are potentially relevant beyond the field of health and our preliminary findings need to be further explored in future studies involving a broader range of nonhealth-related searches. %M 26693859 %R 10.2196/jmir.5038 %U http://www.jmir.org/2015/12/e286/ %U https://doi.org/10.2196/jmir.5038 %U http://www.ncbi.nlm.nih.gov/pubmed/26693859 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 12 %P e281 %T Assessing Pictograph Recognition: A Comparison of Crowdsourcing and Traditional Survey Approaches %A Kuang,Jinqiu %A Argo,Lauren %A Stoddard,Greg %A Bray,Bruce E %A Zeng-Treitler,Qing %+ Department of Biomedical Informatics, University of Utah, 421 Wakara Way, Suite 140, Salt Lake City, UT, 84108, United States, 1 801 581 4080, Jinqiu.kuang@utah.edu %K crowdsourcing %K patient discharge summaries %K Amazon Mechanical Turk %K pictograph recognition %K cardiovascular %D 2015 %7 17.12.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Compared to traditional methods of participant recruitment, online crowdsourcing platforms provide a fast and low-cost alternative. Amazon Mechanical Turk (MTurk) is a large and well-known crowdsourcing service. It has developed into the leading platform for crowdsourcing recruitment. Objective: To explore the application of online crowdsourcing for health informatics research, specifically the testing of medical pictographs. Methods: A set of pictographs created for cardiovascular hospital discharge instructions was tested for recognition. This set of illustrations (n=486) was first tested through an in-person survey in a hospital setting (n=150) and then using online MTurk participants (n=150). We analyzed these survey results to determine their comparability. Results: Both the demographics and the pictograph recognition rates of online participants were different from those of the in-person participants. In the multivariable linear regression model comparing the 2 groups, the MTurk group scored significantly higher than the hospital sample after adjusting for potential demographic characteristics (adjusted mean difference 0.18, 95% CI 0.08-0.28, P<.001). The adjusted mean ratings were 2.95 (95% CI 2.89-3.02) for the in-person hospital sample and 3.14 (95% CI 3.07-3.20) for the online MTurk sample on a 4-point Likert scale (1=totally incorrect, 4=totally correct). Conclusions: The findings suggest that crowdsourcing is a viable complement to traditional in-person surveys, but it cannot replace them. %M 26678085 %R 10.2196/jmir.4582 %U http://www.jmir.org/2015/12/e281/ %U https://doi.org/10.2196/jmir.4582 %U http://www.ncbi.nlm.nih.gov/pubmed/26678085 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 12 %P e279 %T Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review %A Covolo,Loredana %A Rubinelli,Sara %A Ceretti,Elisabetta %A Gelatti,Umberto %+ Unit of Hygiene, Epidemiology and Public Health, Department of Medical and Surgical Specialties, Radiological Sciences and Public Health, University of Brescia, Italy, Viale Europa 11, Viale Europa 11, Brescia, 25127, Italy, 39 030 3717697, loredana.covolo@unibs.it %K genetic testing %K direct-to-consumer %K Internet %K online market %K systematic review %D 2015 %7 14.12.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Direct-to-consumer genetic tests (DTC-GT) are easily purchased through the Internet, independent of a physician referral or approval for testing, allowing the retrieval of genetic information outside the clinical context. There is a broad debate about the testing validity, their impact on individuals, and what people know and perceive about them. Objective: The aim of this review was to collect evidence on DTC-GT from a comprehensive perspective that unravels the complexity of the phenomenon. Methods: A systematic search was carried out through PubMed, Web of Knowledge, and Embase, in addition to Google Scholar according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist with the key term “Direct-to-consumer genetic test.” Results: In the final sample, 118 articles were identified. Articles were summarized in five categories according to their focus on (1) knowledge of, attitude toward use of, and perception of DTC-GT (n=37), (2) the impact of genetic risk information on users (n=37), (3) the opinion of health professionals (n=20), (4) the content of websites selling DTC-GT (n=16), and (5) the scientific evidence and clinical utility of the tests (n=14). Most of the articles analyzed the attitude, knowledge, and perception of DTC-GT, highlighting an interest in using DTC-GT, along with the need for a health care professional to help interpret the results. The articles investigating the content analysis of the websites selling these tests are in agreement that the information provided by the companies about genetic testing is not completely comprehensive for the consumer. Given that risk information can modify consumers’ health behavior, there are surprisingly few studies carried out on actual consumers and they do not confirm the overall concerns on the possible impact of DTC-GT. Data from studies that investigate the quality of the tests offered confirm that they are not informative, have little predictive power, and do not measure genetic risk appropriately. Conclusions: The impact of DTC-GT on consumers’ health perceptions and behaviors is an emerging concern. However, negative effects on consumers or health benefits have yet to be observed. Nevertheless, since the online market of DTC-GT is expected to grow, it is important to remain aware of a possible impact. %M 26677835 %R 10.2196/jmir.4378 %U http://www.jmir.org/2015/12/e279/ %U https://doi.org/10.2196/jmir.4378 %U http://www.ncbi.nlm.nih.gov/pubmed/26677835 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 11 %P e261 %T The Association Between Online Health Information–Seeking Behaviors and Health Behaviors Among Hispanics in New York City: A Community-Based Cross-Sectional Study %A Lee,Young Ji %A Boden-Albala,Bernadette %A Jia,Haomiao %A Wilcox,Adam %A Bakken,Suzanne %+ Department of Health and Community Systems, School of Nursing, University of Pittsburgh, 3500 Victoria Street, Pittsburgh, PA, 15261, United States, 1 412 624 7886, leeyoung@pitt.edu %K Internet %K information-seeking behavior %K health behavior %K consumer health information %K Hispanic Americans %D 2015 %7 26.11.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Hispanics are the fastest-growing minority group in the United States and they suffer from a disproportionate burden of chronic diseases. Studies have shown that online health information has the potential to affect health behaviors and influence management of chronic disease for a significant proportion of the population, but little research has focused on Hispanics. Objective: The specific aim of this descriptive, cross-sectional study was to examine the association between online health information–seeking behaviors and health behaviors (physical activity, fruit and vegetable consumption, alcohol use, and hypertension medication adherence) among Hispanics. Methods: Data were collected from a convenience sample (N=2680) of Hispanics living in northern Manhattan by bilingual community health workers in a face-to-face interview and analyzed using linear and ordinal logistic regression. Variable selection and statistical analyses were guided by the Integrative Model of eHealth Use. Results: Only 7.38% (198/2680) of the sample reported online health information–seeking behaviors. Levels of moderate physical activity and fruit, vegetable, and alcohol consumption were low. Among individuals taking hypertension medication (n=825), adherence was reported as high by approximately one-third (30.9%, 255/825) of the sample. Controlling for demographic, situational, and literacy variables, online health information–seeking behaviors were significantly associated with fruit (β=0.35, 95% CI 0.08-0.62, P=.01) and vegetable (β=0.36, 95% CI 0.06-0.65, P=.02) consumption and physical activity (β=3.73, 95% CI 1.99-5.46, P<.001), but not alcohol consumption or hypertension medication adherence. In the regression models, literacy factors, which were used as control variables, were associated with 3 health behaviors: social networking site membership (used to measure one dimension of computer literacy) was associated with fruit consumption (β=0.23, 95% CI 0.05-0.42, P=.02), health literacy was associated with alcohol consumption (β=0.44, 95% CI 0.24-0.63, P<.001), and hypertension medication adherence (β=–0.32, 95% CI –0.62 to –0.03, P=.03). Models explained only a small amount of the variance in health behaviors. Conclusions: Given the promising, although modest, associations between online health information–seeking behaviors and some health behaviors, efforts are needed to improve Hispanics’ ability to access and understand health information and to enhance the availability of online health information that is suitable in terms of language, readability level, and cultural relevance. %M 26611438 %R 10.2196/jmir.4368 %U http://www.jmir.org/2015/11/e261/ %U https://doi.org/10.2196/jmir.4368 %U http://www.ncbi.nlm.nih.gov/pubmed/26611438 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 11 %P e267 %T The Impact of an eHealth Portal on Health Care Professionals’ Interaction with Patients: Qualitative Study %A Das,Anita %A Faxvaag,Arild %A Svanæs,Dag %+ Department of Neuroscience, Faculty of Medicine, Norwegian University of Science and Technology, Medisinsk Teknisk Forskningssenter, Trondheim, 7491, Norway, 47 97599434, anita.das@ntnu.no %K bariatric surgery %K online communication %K eHealth %K patient %K health care %K Web 2.0 %D 2015 %7 24.11.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: People who undergo weight loss surgery require a comprehensive treatment program to achieve successful outcomes. eHealth solutions, such as secure online portals, create new opportunities for improved health care delivery and care, but depend on the organizational delivery systems and on the health care professionals providing it. So far, these have received limited attention and the overall adoption of eHealth solutions remains low. In this study, a secure eHealth portal was implemented in a bariatric surgery clinic and offered to their patients. During the study period of 6 months, 60 patients and 5 health care professionals had access. The portal included patient information, self-management tools, and communication features for online dialog with peers and health care providers at the bariatric surgery clinic. Objective: The aim of this study was to characterize and assess the impact of an eHealth portal on health care professionals’ interaction with patients in bariatric surgery. Methods: This qualitative case study involved a field study consisting of contextual interviews at the clinic involving observing and speaking with personnel in their actual work environment. Semi-structured in-depth interviews were conducted with health care professionals who interacted with patients through the portal. Analysis of the collected material was done inductively using thematic analysis. Results: The analysis revealed two main dimensions of using an eHealth portal in bariatric surgery: the transparency it represents and the responsibility that follows by providing it. The professionals reported the eHealth portal as (1) a source of information, (2) a gateway to approach and facilitate the patients, (3) a medium for irrevocable postings, (4) a channel that exposes responsibility and competence, and (5) a tool in the clinic. Conclusions: By providing an eHealth portal to patients in a bariatric surgery program, health care professionals can observe patients’ writings and revelations thereby capturing patient challenges and acting and implementing measures. Interacting with patients through the portal can prevent dropouts and deterioration of patients’ health. However, professionals report on organizational challenges and personal constraints related to communicating with patients in writing online. Further development of guidelines and education of health care professionals about how to handle, prioritize, communicate, and facilitate patients online is required in addition to increased attention to the organizational infrastructures and incentives for enabling such solutions in health care. %M 26601678 %R 10.2196/jmir.4950 %U http://www.jmir.org/2015/11/e267/ %U https://doi.org/10.2196/jmir.4950 %U http://www.ncbi.nlm.nih.gov/pubmed/26601678 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 11 %P e265 %T Provision of a Medicines Information Service to Consumers on Facebook: An Australian Case Study %A Benetoli,Arcelio %A Chen,Timothy F %A Spagnardi,Sarah %A Beer,Troy %A Aslani,Parisa %+ Faculty of Pharmacy, The University of Sydney, Pharmacy & Bank Building (A15), Science Road, The University of Sydney, Sydney, 2006, Australia, 61 2 9351 7110 ext 17110, arcelio.benetoli@sydney.edu.au %K medicines information %K Facebook %K pharmacists %K consumers %K information services %K drug information services %K social media %D 2015 %7 23.11.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Social networking sites (SNSs) have changed the way people communicate. They may also change the way people seek health advice. Objective: This study describes the provision of a medicines information service on Facebook to individual consumers. It aimed to discuss the pros and cons, and inform health and pharmacy stakeholders and researchers about the opportunities and challenges of providing such a service. Methods: We adopted an exploratory approach using a case study method. Results: NPS MedicineWise, an independent, not-for-profit Australian organization, runs a public question-and-answer service on Facebook, dubbed Pharmacist Hour. Consumers following the organization’s Facebook page are invited to post medication-related questions often with a suggested health topic. A wide range of questions and comments are posted related to medication usage. The pharmacist answers the queries, providing evidence-based medicines information and using consumer-friendly language, during the specific 1-hour period. The most popular questions in the past 12 months were related to adverse effects, treatment options for conditions, and drug interactions. The service had a mean number of engagements (defined as a like or share of the Pharmacy Hour post) of 38 (SD 19) people and a mean 5 (SD 3) questions per session. Conclusions: The Pharmacist Hour Facebook service addresses the medicines information needs of consumers and indirectly promotes other appropriate and relevant NPS MedicineWise products and services to further assist consumers. The service offers a new medium for a quality use of medicines organization committed to promoting awareness about the correct and safe use of medicines in Australia. %M 26596328 %R 10.2196/jmir.4161 %U http://www.jmir.org/2015/11/e265/ %U https://doi.org/10.2196/jmir.4161 %U http://www.ncbi.nlm.nih.gov/pubmed/26596328 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 4 %P e131 %T Monitoring Web Site Usage of e-Bug: A Hygiene and Antibiotic Awareness Resource for Children %A Young,Vicki L %A Rajapandian,Vijayamaharaj %A Eley,Charlotte V %A Hoekstra,Beverley A %A Lecky,Donna M %A McNulty,Cliodna AM %+ Public Health England, Primary Care Unit, Microbiology Department, Gloucestershire Royal Hospital, Gloucester, GL1 3NN, United Kingdom, 44 300 422 5062, vicki.young@phe.gov.uk %K e-Bug %K educational resources %K public health %K antibiotics %D 2015 %7 13.11.2015 %9 Original Paper %J JMIR Res Protoc %G English %X Background: e-Bug is an educational resource which teaches children and young people about microbes, hygiene, infection, and prudent antibiotic use. The e-Bug resources are available in over 22 different languages and they are used widely across the globe. The resources can be accessed from the e-Bug website. Objective: The objective of this study was to analyze the usage of the e-Bug website in order to understand how users access the website, where and when they access the site, and to review variation in use across the different areas of the site. Methods: The usage statistics for the e-Bug website were monitored by Google Analytics between September 2010 and August 2013. Results: The statistics show the website had over 324,000 visits during the three years, from just under 250,000 visitors, with the number of visitors increasing year after year. Visitors accessed the website from 211 different countries, with more than 267,000 documents downloaded. The majority of visitors were from the United Kingdom and visited the English website, although countries such as France and Portugal were also frequent visitors. Conclusions: These website statistics confirm that e-Bug is frequently used across Europe and highlight that e-Bug use has expanded across the world. The findings from this report will be used to inform future modifications or updates to the materials, as well as the development of new educational resources. %M 26567127 %R 10.2196/resprot.4049 %U http://www.researchprotocols.org/2015/4/e131/ %U https://doi.org/10.2196/resprot.4049 %U http://www.ncbi.nlm.nih.gov/pubmed/26567127 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 11 %P e256 %T Pro-Anorexia and Anti-Pro-Anorexia Videos on YouTube: Sentiment Analysis of User Responses %A Oksanen,Atte %A Garcia,David %A Sirola,Anu %A Näsi,Matti %A Kaakinen,Markus %A Keipi,Teo %A Räsänen,Pekka %+ School of Social Sciences and Humanities, University of Tampere, Tampere, 33014, Finland, 358 50 318 7279, atte.oksanen@uta.fi %K eating disorders %K anorexia %K social media %K emotions %D 2015 %7 12.11.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Pro-anorexia communities exist online and encourage harmful weight loss and weight control practices, often through emotional content that enforces social ties within these communities. User-generated responses to videos that directly oppose pro-anorexia communities have not yet been researched in depth. Objective: The aim was to study emotional reactions to pro-anorexia and anti-pro-anorexia online content on YouTube using sentiment analysis. Methods: Using the 50 most popular YouTube pro-anorexia and anti-pro-anorexia user channels as a starting point, we gathered data on users, their videos, and their commentators. A total of 395 anorexia videos and 12,161 comments were analyzed using positive and negative sentiments and ratings submitted by the viewers of the videos. The emotional information was automatically extracted with an automatic sentiment detection tool whose reliability was tested with human coders. Ordinary least squares regression models were used to estimate the strength of sentiments. The models controlled for the number of video views and comments, number of months the video had been on YouTube, duration of the video, uploader’s activity as a video commentator, and uploader’s physical location by country. Results: The 395 videos had more than 6 million views and comments by almost 8000 users. Anti-pro-anorexia video comments expressed more positive sentiments on a scale of 1 to 5 (adjusted prediction [AP] 2.15, 95% CI 2.11-2.19) than did those of pro-anorexia videos (AP 2.02, 95% CI 1.98-2.06). Anti-pro-anorexia videos also received more likes (AP 181.02, 95% CI 155.19-206.85) than pro-anorexia videos (AP 31.22, 95% CI 31.22-37.81). Negative sentiments and video dislikes were equally distributed in responses to both pro-anorexia and anti-pro-anorexia videos. Conclusions: Despite pro-anorexia content being widespread on YouTube, videos promoting help for anorexia and opposing the pro-anorexia community were more popular, gaining more positive feedback and comments than pro-anorexia videos. Thus, the anti-pro-anorexia content provided a user-generated counterforce against pro-anorexia content on YouTube. Professionals working with young people should be aware of the social media dynamics and versatility of user-generated eating disorder content online. %M 26563678 %R 10.2196/jmir.5007 %U http://www.jmir.org/2015/11/e256/ %U https://doi.org/10.2196/jmir.5007 %U http://www.ncbi.nlm.nih.gov/pubmed/26563678 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 10 %P e241 %T Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom %A Hattink,Bart %A Meiland,Franka %A van der Roest,Henriëtte %A Kevern,Peter %A Abiuso,Francesca %A Bengtsson,Johan %A Giuliano,Angele %A Duca,Annalise %A Sanders,Jennifer %A Basnett,Fern %A Nugent,Chris %A Kingston,Paul %A Dröes,Rose-Marie %+ VU University medical center Amsterdam, Department of Psychiatry, GGZ inGeest Dienst Onderzoek en Innovatie - Overschiestraat, Postbus 74077, Amsterdam, 1070BB, Netherlands, 31 207885622, b.hattink@vumc.nl %K dementia %K caregivers %K distance-learning %K empathy %D 2015 %7 30.10.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: The doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers. Objective: The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. Methods: For 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia. Secondary outcome measures were empathy, quality of life, burden, and caregivers’ sense of competence. Results: STAR was rated positively by all user groups on both usefulness and user friendliness. Significant effects were found on a person-centered care approach and on the total score on positive attitudes to dementia; both the experimental and the control group increased in score. Regarding empathy, significant improvements were found in the STAR training group on distress, empathic concern, and taking the perspective of the person with dementia. In the experimental group, however, there was a significant reduction in self-reported sense of competence. Conclusions: The STAR training portal is a useful and user-friendly e-learning method, which has demonstrated its ability to provide significant positive effects on caregiver attitudes and empathy. %M 26519106 %R 10.2196/jmir.4025 %U http://www.jmir.org/2015/10/e241/ %U https://doi.org/10.2196/jmir.4025 %U http://www.ncbi.nlm.nih.gov/pubmed/26519106 %0 Journal Article %@ 1929-073X %I JMIR Publications Inc. %V 4 %N 4 %P e20 %T Feasibility of Two Educational Methods for Teaching New Mothers: A Pilot Study %A Logsdon,M Cynthia %A Davis,Deborah %A Eckert,Diane %A Smith,Frances %A Stikes,Reetta %A Rushton,Jeff %A Myers,John %A Capps,Joshua %A Sparks,Kathryn %+ University of Louisville, School of Nursing, 555 S. Floyd Street, HSC, Louisville, KY, 40202, United States, 1 5028525825, mclogs01@louisville.edu %K Patient Education as Topic %K Video Recording %K Postpartum Period %K Utilization %K Nurses %K Personal Satisfaction %D 2015 %7 08.10.2015 %9 Original Paper %J Interact J Med Res %G English %X Background: Printed health educational materials are commonly issued to prepare patients for hospital discharge. Teaching methods that engage multiple senses have been shown to positively affect learning outcomes, suggesting that paper materials may not be the most effective approach when educating new mothers. In addition, many written patient educational materials do not meet national health literacy guidelines. Videos that stimulate visual and auditory senses provide an alternative, potentially more effective, strategy for delivering health information. The acceptability of these methods, as perceived by nurses executing patient education initiatives, is important for determining the most appropriate strategy. Objective: The purpose of this study was to determine the feasibility of 2 educational methods for teaching new mothers how to care for themselves and their infants after hospital discharge. Feasibility was measured by adequate enrollment, acceptability of the intervention to patients and nurses, and initial efficacy. Methods: New mothers (n=98) on a Mother-Baby Unit received health information focused on self-care and infant care delivered as either simple printed materials or YouTube videos on an iPad. Mothers completed a pretest, post-test, and an acceptability survey. Following completion of the initiative, nurses who participated in delivering the health education using one of these 2 methods were asked to complete a survey to determine their satisfaction with and confidence in using the materials. Results: Mothers, on average, were 26 years old; 72% had a high school education; and 41% were African American. The improvement in knowledge scores was significantly higher for the iPad group (8.6% vs 4.4%, P=.02) compared to the pamphlet group. Group (B=4.81, P=.36) and time (B=6.12, P<.001) significantly affected scores, while no significant interaction effect was observed (B=5.69, P=.09). There were no significant differences in responses between the groups (all P values >.05). The nurses had a mean age of 44.3 years (SD 13.9) and had, on average, 16.6 years of experience (SD 13.8). The nurses felt confident and satisfied administering both educational modalities. Conclusions: The pamphlet and iPad were identified as feasible and acceptable modalities for educating new mothers about self-care and infant care, though the iPad was more effective in improving knowledge. Understanding the acceptability of different teaching methods to patient educators is important for successful delivery of informational materials at discharge. %M 26449647 %R 10.2196/ijmr.4583 %U http://www.i-jmr.org/2015/4/e20/ %U https://doi.org/10.2196/ijmr.4583 %U http://www.ncbi.nlm.nih.gov/pubmed/26449647 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 3 %P e113 %T Informed Choice for Participation in Down Syndrome Screening: Development and Content of a Web-Based Decision Aid %A Skjøth,Mette Maria %A Hansen,Helle Ploug %A Draborg,Eva %A Pedersen,Claus Duedal %A Lamont,Ronald F %A Jørgensen,Jan Stener %+ Research Unit of Gynecology and Obstetrics, Department of Gynecology and Obstetrics, Institute of Clinical Research, Odense University Hospital, University of Southern Denmark, Kløvervænget 10, 10th floor, Odense, , Denmark, 45 20 57 50 43, Mette.Maria.Skjoeth@rsyd.dk %K decision support intervention %K decision making %K informed choice %K prenatal diagnosis %K pregnancy %K development %K Web-based intervention %K eHealth tool %K telemedicine %D 2015 %7 21.09.2015 %9 Original Paper %J JMIR Res Protoc %G English %X 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. %M 26392319 %R 10.2196/resprot.4291 %U http://www.researchprotocols.org/2015/3/e113/ %U https://doi.org/10.2196/resprot.4291 %U http://www.ncbi.nlm.nih.gov/pubmed/26392319 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 3 %P e110 %T Development of a Website Providing Evidence-Based Information About Nutrition and Cancer: Fighting Fiction and Supporting Facts Online %A van Veen,Merel Rebecca %A Beijer,Sandra %A Adriaans,Anika Maria Alberdina %A Vogel-Boezeman,Jeanne %A Kampman,Ellen %+ Netherlands Comprehensive Cancer Organisation (IKNL), PO Box 231, Eindhoven, 5600 AE, Netherlands, 31 882346000, m.vanveen@iknl.nl %K cancer %K information needs %K Internet %K nutrition %K website development %D 2015 %7 08.09.2015 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Although widely available, the general public, cancer patients, and cancer survivors have difficulties accessing evidence-based information on nutrition and cancer. It is challenging to distinguish myths from facts, and sometimes conflicting information can be found in different places. The public and patients would benefit from evidence-based, correct, and clear information from an easily recognizable source. Objective: The aim of this project is to make scientific information available for the general public, cancer patients, and cancer survivors through a website. The aim of this paper is to describe and evaluate the development of the website as well as related statistics 1st year after its launch. Methods: To develop the initial content for the website, the website was filled with answers to frequently asked questions provided by cancer organizations and the Dutch Dietetic Oncology Group, and by responding to various fiction and facts published in the media. The website was organized into 3 parts, namely, nutrition before (prevention), during, and after cancer therapy; an opportunity for visitors to submit specific questions regarding nutrition and cancer was included. The website was pretested by patients, health care professionals, and communication experts. After launching the website, visitors’ questions were answered by nutritional scientists and dieticians with evidence- or eminence-based information on nutrition and cancer. Once the website was live, question categories and website statistics were recorded. Results: Before launch, the key areas for improvement, such as navigation, categorization, and missing information, were identified and adjusted. In the 1st year after the launch, 90,111 individuals visited the website, and 404 questions were submitted on nutrition and cancer. Most of the questions were on cancer prevention and nutrition during the treatment of cancer. Conclusions: The website provides access to evidence- and eminence-based information on nutrition and cancer. As can be concluded from the number of visitors and the number of questions submitted to the website, the website fills a gap. %M 26350824 %R 10.2196/resprot.4757 %U http://www.researchprotocols.org/2015/3/e110/ %U https://doi.org/10.2196/resprot.4757 %U http://www.ncbi.nlm.nih.gov/pubmed/26350824 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 2 %P e10 %T The Impact of Advice Seekers’ Need Salience and Doctors’ Communication Style on Attitude and Decision Making: A Web-Based Mammography Consultation Role Play %A Fissler,Tim %A Bientzle,Martina %A Cress,Ulrike %A Kimmerle,Joachim %+ Leibniz-Institut fuer Wissensmedien, Knowledge Media Research Center, Knowledge Construction Lab, Schleichstrasse 6, Tuebingen, , Germany, 49 7071 979 363, j.kimmerle@iwm-tuebingen.de %K communication style %K needs %K need salience %K attitude %K decision-making %K mammography screening %K online consultation %D 2015 %7 08.09.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: Patients and advice seekers come to a medical consultation with typical needs, and physicians require adequate communication skills in order to address those needs effectively. It is largely unclear, however, to what extent advice seekers’ attitudes toward a medical procedure or their resulting decisions are influenced by a physician’s communication that ignores or explicitly takes these needs into account. Objective: This experimental study tested how advice seekers’ salient needs and doctor’s communication styles influenced advice seekers’ attitudes toward mammography screening and their decision whether or not to participate in this procedure. Methods: One hundred women (age range 20-47 years, mean 25.22, SD 4.71) participated in an interactive role play of an online consultation. During the consultation, a fictitious, program-controlled physician provided information about advantages and disadvantages of mammography screening. The physician either merely communicated factual medical information or made additional comments using a communication style oriented toward advice seekers’ typical needs for clarity and well-being. Orthogonal to this experimental treatment, participants’ personal needs for clarity and for well-being were either made salient before or after the consultation with a needs questionnaire. We also measured all participants’ attitudes toward mammography screening and their hypothetical decisions whether or not to participate before and after the experiment. Results: As assumed, the participants expressed strong needs for clarity (mean 4.57, SD 0.42) and for well-being (mean 4.21, SD 0.54) on 5-point Likert scales. Making these needs salient or not revealed significant interaction effects with the physician’s communication style regarding participants’ attitude change (F1,92=7.23, P=.009, η2=.073) and decision making (F1,92=4.43, P=.038, η2=.046). Those participants whose needs were made salient before the consultation responded to the physician’s communication style, while participants without salient needs did not. When the physician used a need-oriented communication style, those participants with salient needs had a more positive attitude toward mammography after the consultation than before (mean 0.13, SD 0.54), while they changed their attitude in a negative direction when confronted with a purely fact-oriented communication style (mean −0.35, SD 0.80). The same applied to decision modification (need-oriented: mean 0.10, SD 0.99; fact-oriented: mean −0.30, SD 0.88). Conclusions: The findings underline the importance of communicating in a need-oriented style with patients and advice seekers who are aware of their personal needs. Ignoring the needs of those people appears to be particularly problematic. So physicians’ sensitivity for advice seekers’ currently relevant needs is essential. %M 28410160 %R 10.2196/cancer.4279 %U http://cancer.jmir.org/2015/2/e10/ %U https://doi.org/10.2196/cancer.4279 %U http://www.ncbi.nlm.nih.gov/pubmed/28410160 %0 Journal Article %@ 2369-1999 %I JMIR Publications Inc. %V 1 %N 2 %P e8 %T Response Across the Health-Literacy Spectrum of Kidney Transplant Recipients to a Sun-Protection Education Program Delivered on Tablet Computers: Randomized Controlled Trial %A Robinson,June K %A Friedewald,John J %A Desai,Amishi %A Gordon,Elisa J %+ Department of Dermatology, Northwestern University Feinberg School of Medicine, 676 N St. Clair St, Suite 1260, Chicago, IL, 60611, United States, 1 312 926 7449, june-robinson@northwestern.edu %K culturally sensitive %K electronic health intervention %K kidney transplant recipients %K post-transplant outcomes %K skin cancer %K squamous cell carcinoma %K sun protection %K tablet computer %K patient education %K mobile health %D 2015 %7 18.08.2015 %9 Original Paper %J JMIR Cancer %G English %X Background: Sun protection can reduce skin cancer development in kidney transplant recipients, who have a greater risk of developing squamous cell carcinoma than the general population. Objective: A culturally sensitive sun-protection program (SunProtect) was created in English and Spanish with the option of choosing audio narration provided by the tablet computer (Samsung Galaxy Tab 2 10.1). The intervention, which showed skin cancer on patients with various skin tones, explained the following scenarios: skin cancer risk, the ability of sun protection to reduce this risk, as well as offered sun-protection choices. The length of the intervention was limited to the time usually spent waiting during a visit to the nephrologist. Methods: The development of this culturally sensitive, electronic, interactive sun-protection educational program, SunProtect, was guided by the “transtheoretical model,” which focuses on decision making influenced by perceptions of personal risk or vulnerability to a health threat, importance (severity) of the disease, and benefit of sun-protection behavior. Transportation theory, which holds that narratives can have uniquely persuasive effects in overcoming preconceived beliefs and cognitive biases because people transported into a narrative world will alter their beliefs based on information, claims, or events depicted, guided the use of testimonials. Participant tablet use was self-directed. Self-reported responses to surveys were entered into the database through the tablet. Usability was tested through interviews. A randomized controlled pilot trial with 170 kidney transplant recipients was conducted, where the educational program (SunProtect) was delivered through a touch-screen tablet to 84 participants. Results: The study involved 62 non-Hispanic white, 60 non-Hispanic black, and 48 Hispanic/Latino kidney transplant recipients. The demographic survey data showed no significant mean differences between the intervention and control groups in age, sex, income, or time since transplantation. The mean duration of program use varied by the ethnic/racial group, with non-Hispanic whites having the shortest use (23 minutes) and Hispanic/Latinos having the longest use (42 minutes). Knowledge, awareness of skin cancer risk, willingness to change sun protection, and use of sun protection increased from baseline to 2 weeks after the program in participants from all ethnic/racial groups in comparison with controls (P<.05). Kidney transplant recipients with inadequate (47/170, 28%) and marginal functional health literacy (59/170, 35%) listened to either Spanish or English audio narration accompanying the text and graphics. After completion of the program, Hispanic/Latino patients with initially inadequate health literacy increased their knowledge more than non-Hispanic white and black patients with adequate health literacy (P<.05). Sun protection implemented 2 weeks after education varied by the ethnic/racial group. Outdoor activities were reduced by Hispanics/Latinos, non-Hispanic blacks sought shade, Hispanic/Latinos and non-Hispanic blacks wore clothing, and non-Hispanic whites wore sunscreen (P<.05). Conclusion: Educational program with a tablet computer during the kidney transplant recipients’ 6- or 12-month follow-up visits to the transplant nephrologist improved sun protection in all racial/ethnic groups. Tablets may be used to provide patient education and reduce the physician’s burden of educating and training patients. Trial Registration: ClinicalTrials.gov NCT01646099; https://clinicaltrials.gov/ct2/show/NCT01646099 %M 28410176 %R 10.2196/cancer.4787 %U http://cancer.jmir.org/2015/2/e8/ %U https://doi.org/10.2196/cancer.4787 %U http://www.ncbi.nlm.nih.gov/pubmed/28410176 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 3 %P e84 %T Patient-Centered mHealth Living Donor Transplant Education Program for African Americans: Development and Analysis %A Sieverdes,John Christopher %A Nemeth,Lynne S %A Magwood,Gayenell S %A Baliga,Prabhakar K %A Chavin,Kenneth D %A Brunner-Jackson,Brenda %A Patel,Sachin K %A Ruggiero,Kenneth J %A Treiber,Frank A %+ Technology Applications Center for Healthful Lifestyles, College of Nursing, Medical University of South Carolina, 99 Jonathan Lucas St, MSC 160, Charleston, SC, 29425-1600, United States, 1 843 792 8852, treiberf@musc.edu %K kidney transplantation %K living donors %K mobile apps %K qualitative research %K telemedicine %D 2015 %7 10.08.2015 %9 Original Paper %J JMIR Res Protoc %G English %X Background: There is a critical need to expand the pool of available kidneys for African Americans who are on the transplant wait-list due to the disproportionally lower availability of deceased donor kidneys compared with other races/ethnic groups. Encouraging living donation is one method to fill this need. Incorporating mHealth strategies may be a way to deliver educational and supportive services to African American transplant-eligible patients and improve reach to those living in remote areas or unable to attend traditional group-session-based programs. Before program development, it is essential to perform formative research with target populations to determine acceptability and cultivate a patient-centered and culturally relevant approach to be used for program development. Objective: The objectives of this study were to investigate African American kidney transplant recipients’ and kidney donors’/potential donors’ attitudes and perceptions toward mobile technology and its viability in an mHealth program aimed at educating patients about the process of living kidney donation. Methods: Using frameworks from the technology acceptance model and self-determination theory, 9 focus groups (n=57) were administered to African Americans at a southeastern medical center, which included deceased/living donor kidney recipients and living donors/potential donors. After a demonstration of a tablet-based video education session and explanation of a group-based videoconferencing session, focus groups examined members’ perceptions about how educational messages should be presented on topics pertaining to the process of living kidney donation and the transplantation. Questionnaires were administered on technology use and perceptions of the potential program communication platform. Transcripts were coded and themes were examined using NVivo 10 software. Results: Qualitative findings found 5 major themes common among all participants. These included the following: (1) strong support for mobile technology use; (2) different media formats were preferred; (3) willingness to engage in video chats, but face-to-face interaction sometimes preferred; (4) media needs to be user friendly; (5) high prevalence of technology access. Our results show that recipients were willing to spend more time on education than the donors group, they wanted to build conversation skills to approach others, and preferred getting information from many sources, whereas the donor group wanted to hear from other living donors. The questionnaires revealed 85% or more of the sample scored 4+ on a 5-point Likert scale, which indicates high degree of interest to use the proposed program, belief that other mHealth technologies would help with adherence to medical regimens, and doctors would make regimen adjustments quicker. In addition, high utilization of mobile technology was reported; 71.9% of the participants had a mobile phone and 43.9% had a tablet. Conclusions: Our study supports the use of an mHealth education platform for African Americans to learn about living donation. However, potential recipients and potential donors have differing needs, and therefore, programs should be tailored to each target audience. %M 26265532 %R 10.2196/resprot.3715 %U http://www.researchprotocols.org/2015/3/e84/ %U https://doi.org/10.2196/resprot.3715 %U http://www.ncbi.nlm.nih.gov/pubmed/26265532 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 7 %P e188 %T Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey %A Attai,Deanna J %A Cowher,Michael S %A Al-Hamadani,Mohammed %A Schoger,Jody M %A Staley,Alicia C %A Landercasper,Jeffrey %+ UCLA Health Burbank Breast Care, 191 S. Buena Vista Street, Suite 415, Burbank, CA, 91505, United States, 1 818 333 2555, dattai@mednet.ucla.edu %K breast cancer %K education %K social support %K social media %K patient outcome assessment %D 2015 %7 30.07.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Despite reported benefits, many women do not attend breast cancer support groups. Abundant online resources for support exist, but information regarding the effectiveness of participation is lacking. We report the results of a Twitter breast cancer support community participant survey. Objective: The aim was to determine the effectiveness of social media as a tool for breast cancer patient education and decreasing anxiety. Methods: The Breast Cancer Social Media Twitter support community (#BCSM) began in July 2011. Institutional review board approval with a waiver of informed consent was obtained for a deidentified survey that was posted for 2 weeks on Twitter and on the #BCSM blog and Facebook page. Results: There were 206 respondents to the survey. In all, 92.7% (191/206) were female. Respondents reported increased knowledge about breast cancer in the following domains: overall knowledge (80.9%, 153/189), survivorship (85.7%, 162/189), metastatic breast cancer (79.4%, 150/189), cancer types and biology (70.9%, 134/189), clinical trials and research (66.1%, 125/189), treatment options (55.6%, 105/189), breast imaging (56.6%, 107/189), genetic testing and risk assessment (53.9%, 102/189), and radiotherapy (43.4%, 82/189). Participation led 31.2% (59/189) to seek a second opinion or bring additional information to the attention of their treatment team and 71.9% (136/189) reported plans to increase their outreach and advocacy efforts as a result of participation. Levels of reported anxiety before and after participation were analyzed: 29 of 43 (67%) patients who initially reported “high or extreme” anxiety reported “low or no” anxiety after participation (P<.001). Also, no patients initially reporting low or no anxiety before participation reported an increase to high or extreme anxiety after participation. Conclusions: This study demonstrates that breast cancer patients’ perceived knowledge increases and their anxiety decreases by participation in a Twitter social media support group. %M 26228234 %R 10.2196/jmir.4721 %U http://www.jmir.org/2015/7/e188/ %U https://doi.org/10.2196/jmir.4721 %U http://www.ncbi.nlm.nih.gov/pubmed/26228234 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 7 %P e165 %T Why Breast Cancer Risk by the Numbers Is Not Enough: Evaluation of a Decision Aid in Multi-Ethnic, Low-Numerate Women %A Kukafka,Rita %A Yi,Haeseung %A Xiao,Tong %A Thomas,Parijatham %A Aguirre,Alejandra %A Smalletz,Cindy %A David,Raven %A Crew,Katherine %+ Columbia University, College of Physicians and Surgeons, Biomedical Informatics, Mailman School of Public Health, Sociomedical Sciences, 622 West 168th Street, PH-20, Room 314, New York, NY, , United States, 1 212 580 5560, rk326@cumc.columbia.edu %K breast cancer %K decision making %K risk communication %K consumer health informatics %K genetic testing %K decision aid %K risk stratified screening %D 2015 %7 14.07.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Breast cancer risk assessment including genetic testing can be used to classify people into different risk groups with screening and preventive interventions tailored to the needs of each group, yet the implementation of risk-stratified breast cancer prevention in primary care settings is complex. Objective: To address barriers to breast cancer risk assessment, risk communication, and prevention strategies in primary care settings, we developed a Web-based decision aid, RealRisks, that aims to improve preference-based decision-making for breast cancer prevention, particularly in low-numerate women. Methods: RealRisks incorporates experience-based dynamic interfaces to communicate risk aimed at reducing inaccurate risk perceptions, with modules on breast cancer risk, genetic testing, and chemoprevention that are tailored. To begin, participants learn about risk by interacting with two games of experience-based risk interfaces, demonstrating average 5-year and lifetime breast cancer risk. We conducted four focus groups in English-speaking women (age ≥18 years), a questionnaire completed before and after interacting with the decision aid, and a semistructured group discussion. We employed a mixed-methods approach to assess accuracy of perceived breast cancer risk and acceptability of RealRisks. The qualitative analysis of the semistructured discussions assessed understanding of risk, risk models, and risk appropriate prevention strategies. Results: Among 34 participants, mean age was 53.4 years, 62% (21/34) were Hispanic, and 41% (14/34) demonstrated low numeracy. According to the Gail breast cancer risk assessment tool (BCRAT), the mean 5-year and lifetime breast cancer risk were 1.11% (SD 0.77) and 7.46% (SD 2.87), respectively. After interacting with RealRisks, the difference in perceived and estimated breast cancer risk according to BCRAT improved for 5-year risk (P=.008). In the qualitative analysis, we identified potential barriers to adopting risk-appropriate breast cancer prevention strategies, including uncertainty about breast cancer risk and risk models, distrust toward the health care system, and perception that risk assessment to pre-screen women for eligibility for genetic testing may be viewed as rationing access to care. Conclusions: In a multi-ethnic population, we demonstrated a significant improvement in accuracy of perceived breast cancer risk after exposure to RealRisks. However, we identified potential barriers that suggest that accurate risk perceptions will not suffice as the sole basis to support informed decision making and the acceptance of risk-appropriate prevention strategies. Findings will inform the iterative design of the RealRisks decision aid. %M 26175193 %R 10.2196/jmir.4028 %U http://www.jmir.org/2015/7/e165/ %U https://doi.org/10.2196/jmir.4028 %U http://www.ncbi.nlm.nih.gov/pubmed/26175193 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 7 %P e167 %T The Web-Based Osteoarthritis Management Resource My Joint Pain Improves Quality of Care: A Quasi-Experimental Study %A Umapathy,Hema %A Bennell,Kim %A Dickson,Chris %A Dobson,Fiona %A Fransen,Marlene %A Jones,Graeme %A Hunter,David J %+ Institute of Bone and Joint Research, The Kolling Institute, Department of Rheumatology, University of Sydney, Clinical administration 7A, Royal North Shore Hospital, Reserve Road, Sydney, 2065, Australia, 61 29463 1896, david.hunter@sydney.edu.au %K quality of health care %K self-care %K osteoarthritis %K eHealth %K Internet %D 2015 %7 07.07.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Despite the availability of evidence-based guidelines for conservative treatment of osteoarthritis (OA), management is often confined to the use of analgesics and waiting for eventual total joint replacement. This suggests a gap in knowledge for persons with OA regarding the many different treatments available to them. Objective: Our objective was to evaluate outcomes after usage of a Web-based resource called My Joint Pain that contains tailored, evidence-based information and tools aimed to improve self-management of OA on self-management and change in knowledge. Methods: A quasi-experimental design was used to evaluate the My Joint Pain website intervention over a 12-month period. The intervention provided participants with general and user-specific information, monthly assessments with validated instruments, and progress-tracking tools. A nationwide convenience sample of 195 participants with self-assessed hip and/or knee OA completed both baseline and 12-month questionnaires (users: n=104; nonusers: n=91). The primary outcome measure was the Health Evaluation Impact Questionnaire (heiQ) to evaluate 8 different domains (health-directed activity, positive and active engagement in life, emotional distress, self-monitoring and insight, constructive attitudes and approaches, skill and technique acquisition, social integration and support, health service navigation) and the secondary outcome measure was the 17-item Osteoarthritis Quality Indicator (OAQI) questionnaire to evaluate the change in appropriateness of care received by participants. Independent t tests were used to compare changes between groups for the heiQ and chi-square tests to identify changes within and between groups from baseline to 12 months for each OAQI item. Results: Baseline demographics between groups were similar for gender (152/195, 77.9% female), age (mean 60, SD 9 years) and body mass index (mean 31.1, SD 6.8 kg/m2). With the exception of health service navigation, mean effect sizes from all other heiQ domains showed a positive trend for My Joint Pain users compared to the nonusers, although the differences between groups did not reach statistical significance. Within-group changes also showed improvements among the users of the My Joint Pain website for self-management (absolute change score=15%, P=.03), lifestyle (absolute change score=16%, P=.02), and physical activity (absolute change score=11%, P=.04), with no significant improvements for the nonusers. Following 12 months of exposure to the website, there were significant improvements for users compared to nonusers in self-management (absolute change score 15% vs 2%, P=.001) and weight reduction (absolute change scores 3% vs –6%, P=.03) measured on the OAQI. Conclusions: The My Joint Pain Web resource does not significantly improve overall heiQ, but does improve other important aspects of quality of care in people with hip and/or knee OA. Further work is required to improve engagement with the website and the quality of information delivered in order to provide a greater impact. %M 26154022 %R 10.2196/jmir.4376 %U http://www.jmir.org/2015/7/e167/ %U https://doi.org/10.2196/jmir.4376 %U http://www.ncbi.nlm.nih.gov/pubmed/26154022 %0 Journal Article %@ 2291-5222 %I JMIR Publications Inc. %V 3 %N 3 %P e74 %T My Interventional Drug-Eluting Stent Educational App (MyIDEA): Patient-Centered Design Methodology %A Boyd,Andrew Dallas %A Moores,Kaitlin %A Shah,Vicki %A Sadhu,Eugene %A Shroff,Adhir %A Groo,Vicki %A Dickens,Carolyn %A Field,Jerry %A Baumann,Matthew %A Welland,Betty %A Gutowski,Gerry %A Flores Jr,Jose D %A Zhao,Zhongsheng %A Bahroos,Neil %A Hynes,Denise M %A Wilkie,Diana J %+ Department of Biomedical and Health Information Sciences, University of Illinois at Chicago, 1919 W Taylor (MC 530), Chicago, IL, 60612, United States, 1 312 9968339, boyda@uic.edu %K drug-eluting stents %K health informatics %K Kolb's learning theory %K mHealth %K patient-centered design %K patient education %D 2015 %7 02.07.2015 %9 Original Paper %J JMIR mHealth uHealth %G English %X Background: Patient adherence to medication regimens is critical in most chronic disease treatment plans. This study uses a patient-centered tablet app, “My Interventional Drug-Eluting Stent Educational App (MyIDEA).” This is an educational program designed to improve patient medication adherence. Objective: Our goal is to describe the design, methodology, limitations, and results of the MyIDEA tablet app. We created a mobile technology-based patient education app to improve dual antiplatelet therapy adherence in patients who underwent a percutaneous coronary intervention and received a drug-eluting stent. Methods: Patient advisers were involved in the development process of MyIDEA from the initial wireframe to the final launch of the product. The program was restructured and redesigned based on the patient advisers’ suggestions as well as those from multidisciplinary team members. To accommodate those with low health literacy, we modified the language and employed attractive color schemes to improve ease of use. We assumed that the target patient population may have little to no experience with electronic tablets, and therefore, we designed the interface to be as intuitive as possible. Results: The MyIDEA app has been successfully deployed to a low-health-literate elderly patient population in the hospital setting. A total of 6 patients have interacted with MyIDEA for an average of 17.6 minutes/session. Conclusions: Including patient advisers in the early phases of a mobile patient education development process is critical. A number of changes in text order, language, and color schemes occurred to improve ease of use. The MyIDEA program has been successfully deployed to a low-health-literate elderly patient population. Leveraging patient advisers throughout the development process helps to ensure implementation success. %M 26139587 %R 10.2196/mhealth.4021 %U http://mhealth.jmir.org/2015/3/e74/ %U https://doi.org/10.2196/mhealth.4021 %U http://www.ncbi.nlm.nih.gov/pubmed/26139587 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 6 %P e146 %T Informing the Design of Direct-to-Consumer Interactive Personal Genomics Reports %A Shaer,Orit %A Nov,Oded %A Okerlund,Johanna %A Balestra,Martina %A Stowell,Elizabeth %A Ascher,Laura %A Bi,Joanna %A Schlenker,Claire %A Ball,Madeleine %+ Department of Technology Management and Innovation, School of Engineering, New York University, 5 Metrotech Center, Brooklyn, New York, New York, NY, 11201, United States, 1 6462077864, onov@nyu.edu %K genomics %K genetic testing %K interactive visualizations %K personal electronic health records %K direct-to-consumer genetic testing %D 2015 %7 12.06.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: In recent years, people who sought direct-to-consumer genetic testing services have been increasingly confronted with an unprecedented amount of personal genomic information, which influences their decisions, emotional state, and well-being. However, these users of direct-to-consumer genetic services, who vary in their education and interests, frequently have little relevant experience or tools for understanding, reasoning about, and interacting with their personal genomic data. Online interactive techniques can play a central role in making personal genomic data useful for these users. Objective: We sought to (1) identify the needs of diverse users as they make sense of their personal genomic data, (2) consequently develop effective interactive visualizations of genomic trait data to address these users’ needs, and (3) evaluate the effectiveness of the developed visualizations in facilitating comprehension. Methods: The first two user studies, conducted with 63 volunteers in the Personal Genome Project and with 36 personal genomic users who participated in a design workshop, respectively, employed surveys and interviews to identify the needs and expectations of diverse users. Building on the two initial studies, the third study was conducted with 730 Amazon Mechanical Turk users and employed a controlled experimental design to examine the effectiveness of different design interventions on user comprehension. Results: The first two studies identified searching, comparing, sharing, and organizing data as fundamental to users’ understanding of personal genomic data. The third study demonstrated that interactive and visual design interventions could improve the understandability of personal genomic reports for consumers. In particular, results showed that a new interactive bubble chart visualization designed for the study resulted in the highest comprehension scores, as well as the highest perceived comprehension scores. These scores were significantly higher than scores received using the industry standard tabular reports currently used for communicating personal genomic information. Conclusions: Drawing on multiple research methods and populations, the findings of the studies reported in this paper offer deep understanding of users’ needs and practices, and demonstrate that interactive online design interventions can improve the understandability of personal genomic reports for consumers. We discuss implications for designers and researchers. %M 26070951 %R 10.2196/jmir.4415 %U http://www.jmir.org/2015/6/e146/ %U https://doi.org/10.2196/jmir.4415 %U http://www.ncbi.nlm.nih.gov/pubmed/26070951 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 2 %P e70 %T Development of a Culturally Appropriate Bilingual Electronic App About Hepatitis B for Indigenous Australians: Towards Shared Understandings %A Davies,Jane %A Bukulatjpi,Sarah %A Sharma,Suresh %A Caldwell,Luci %A Johnston,Vanessa %A Davis,Joshua Saul %+ Menzies School of Health Research, Global and Tropical Health, Charles Darwin University, PO Box 41096, Casuarina, Darwin, 0811, Australia, 61 889468640, jane.davies@menzies.edu.au %K culture %K development %K health literacy %K hepatitis B %K indigenous population %K language %K portable electronic apps %D 2015 %7 10.06.2015 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Hepatitis B is endemic in Indigenous communities in Northern Australia; however, there is a lack of culturally appropriate educational tools. Health care workers and educators in this setting have voiced a desire for visual, interactive tools in local languages. Mobile phones are increasingly used and available in remote Indigenous communities. In this context, we identified the need for a tablet-based health education app about hepatitis B, developed in partnership with an Australian remote Indigenous community. Objective: To develop a culturally appropriate bilingual app about hepatitis B for Indigenous Australians in Arnhem Land using a participatory action research (PAR) framework. Methods: This project was a partnership between the Menzies School of Health Research, Miwatj Aboriginal Health Corporation, Royal Darwin Hospital Liver Clinic, and Dreamedia Darwin. We have previously published a qualitative study that identified major knowledge gaps about hepatitis B in this community, and suggested that a tablet-based app would be an appropriate and popular tool to improve this knowledge. The process of developing the app was based on PAR principles, particularly ongoing consultation, evaluation, and discussion with the community throughout each iterative cycle. Stages included development of the storyboard, the translation process (forward translation and backtranslation), prelaunch community review, launch and initial community evaluation, and finally, wider launch and evaluation at a viral hepatitis conference. Results: We produced an app called “Hep B Story” for use with iPad, iPhone, Android tablets, and mobile phones or personal computers. The app is culturally appropriate, audiovisual, interactive, and users can choose either English or Yolŋu Matha (the most common language in East Arnhem Land) as their preferred language. The initial evaluation demonstrated a statistically significant improvement in Hep B-related knowledge for 2 of 3 questions (P=.01 and .02, respectively) and overwhelmingly positive opinion regarding acceptability and ease of use (median rating of 5, on a 5-point Likert-type scale when users were asked if they would recommend the app to others). Conclusions: We describe the process of development of a bilingual hepatitis B-specific app for Indigenous Australians, using a PAR framework. The approach was found to be successful with positive evaluations. %M 26063474 %R 10.2196/resprot.4216 %U http://www.researchprotocols.org/2015/2/e70/ %U https://doi.org/10.2196/resprot.4216 %U http://www.ncbi.nlm.nih.gov/pubmed/26063474 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 4 %P e104 %T The Effect of Modality and Narration Style on Recall of Online Health Information: Results From a Web-Based Experiment %A Bol,Nadine %A van Weert,Julia CM %A de Haes,Hanneke CJM %A Loos,Eugene F %A Smets,Ellen MA %+ Amsterdam School of Communication Research / ASCoR, Department of Communication Science, University of Amsterdam, Nieuwe Achtergracht 166, Amsterdam, 1018 WV, Netherlands, 31 205252113, n.bol@uva.nl %K instructional films and videos %K narration %K personal narratives %K age groups %K consumer health information %K memory %K mental recall %K patient education %D 2015 %7 24.04.2015 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 25910416 %R 10.2196/jmir.4164 %U http://www.jmir.org/2015/4/e104/ %U https://doi.org/10.2196/jmir.4164 %U http://www.ncbi.nlm.nih.gov/pubmed/25910416 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 4 %P e93 %T Insights Into the Impact of Online Physician Reviews on Patients’ Decision Making: Randomized Experiment %A Grabner-Kräuter,Sonja %A Waiguny,Martin KJ %+ Department of Marketing and International Management, Alpen-Adria-Universität Klagenfurt, Universitätsstrasse 65-67, Klagenfurt, 9020, Austria, 43 463 2700 ext 4042, sonja.grabner@aau.at %K physician reviews %K physician-rating website %K physician choice making %K patient experiences %K word of mouth %D 2015 %7 09.04.2015 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 25862516 %R 10.2196/jmir.3991 %U http://www.jmir.org/2015/4/e93/ %U https://doi.org/10.2196/jmir.3991 %U http://www.ncbi.nlm.nih.gov/pubmed/25862516 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 2 %P e39 %T The Use of Virtual World-Based Cardiac Rehabilitation to Encourage Healthy Lifestyle Choices Among Cardiac Patients: Intervention Development and Pilot Study Protocol %A Brewer,LaPrincess C %A Kaihoi,Brian %A Zarling,Kathleen K %A Squires,Ray W %A Thomas,Randal %A Kopecky,Stephen %+ Mayo Clinic College of Medicine, Department of Medicine, 200 First Street SW, Rochester, MN, 55905, United States, 1 507 284 9601, kopecky.stephen@mayo.edu %K cardiac rehabilitation %K cardiovascular diseases %K eHealth %K telemedicine %K Internet %K health behavior %D 2015 %7 08.04.2015 %9 Protocol %J JMIR Res Protoc %G English %X Background: Despite proven benefits through the secondary prevention of cardiovascular disease (CVD) and reduction of mortality, cardiac rehabilitation (CR) remains underutilized in cardiac patients. Underserved populations most affected by CVD including rural residents, low socioeconomic status patients, and racial/ethnic minorities have the lowest participation rates due to access barriers. Internet-and mobile-based lifestyle interventions have emerged as potential modalities to complement and increase accessibility to CR. An outpatient CR program using virtual world technology may provide an effective alternative to conventional CR by overcoming patient access limitations such as geographics, work schedule constraints, and transportation. Objective: The objective of this paper is to describe the research protocol of a two-phased, pilot study that will assess the feasibility (Phase 1) and comparative effectiveness (Phase 2) of a virtual world-based (Second Life) CR program as an extension of a conventional CR program in achieving healthy behavioral change among post-acute coronary syndrome (ACS) and post-percutaneous coronary intervention (PCI) patients. We hypothesize that virtual world CR users will improve behaviors (physical activity, diet, and smoking) to a greater degree than conventional CR participants. Methods: In Phase 1, we will recruit at least 10 patients enrolled in outpatient CR who were recently hospitalized for an ACS (unstable angina, ST-segment elevation myocardial infarction, non-ST-segment elevation myocardial infarction) or who recently underwent elective PCI at Mayo Clinic Hospital, Rochester Campus in Rochester, MN with at least one modifiable, lifestyle risk factor target (sedentary lifestyle, unhealthy diet, and current smoking). Recruited patients will participate in a 12-week, virtual world health education program which will provide feedback on the feasibility, usability, and design of the intervention. During Phase 2, we will conduct a 2-arm, parallel group, single-center, randomized controlled trial (RCT). Patients will be randomized at a 1:1 ratio to adjunct virtual world-based CR with conventional CR or conventional CR only. The primary outcome is a composite including at least one of the following (1) at least 150 minutes of physical activity per week, (2) daily consumption of five or more fruits and vegetables, and (3) smoking cessation. Patients will be assessed at 3, 6, and 12 months. Results: The Phase 1 feasibility study is currently open for recruitment which will be followed by the Phase 2 RCT. The anticipated completion date for the study is May 2016. Conclusions: While research on the use of virtual world technology in health programs is in its infancy, it offers unique advantages over current Web-based health interventions including social interactivity and active learning. It also increases accessibility to vulnerable populations who have higher burdens of CVD. This study will yield results on the effectiveness of a virtual world-based CR program as an innovative platform to influence healthy lifestyle behavior and self-efficacy. %M 25857331 %R 10.2196/resprot.4285 %U http://www.researchprotocols.org/2015/2/e39/ %U https://doi.org/10.2196/resprot.4285 %U http://www.ncbi.nlm.nih.gov/pubmed/25857331 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 2 %P e38 %T Retrieval of Publications Addressing Shared Decision Making: An Evaluation of Full-Text Searches on Medical Journal Websites %A Blanc,Xavier %A Collet,Tinh-Hai %A Auer,Reto %A Iriarte,Pablo %A Krause,Jan %A Légaré,France %A Cornuz,Jacques %A Clair,Carole %+ Department of Ambulatory Care and Community Medicine, University of Lausanne, Rue du Bugnon 44, Lausanne, 1011, Switzerland, 41 21 314 4732, xavier.blanc2@chuv.ch %K information storage and retrieval %K systematic reviews %K PubMed %K text mining %K full-text search %K decision making %K shared decision making %D 2015 %7 07.04.2015 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Full-text searches of articles increase the recall, defined by the proportion of relevant publications that are retrieved. However, this method is rarely used in medical research due to resource constraints. For the purpose of a systematic review of publications addressing shared decision making, a full-text search method was required to retrieve publications where shared decision making does not appear in the title or abstract. Objective: The objective of our study was to assess the efficiency and reliability of full-text searches in major medical journals for identifying shared decision making publications. Methods: A full-text search was performed on the websites of 15 high-impact journals in general internal medicine to look up publications of any type from 1996-2011 containing the phrase “shared decision making”. The search method was compared with a PubMed search of titles and abstracts only. The full-text search was further validated by requesting all publications from the same time period from the individual journal publishers and searching through the collected dataset. Results: The full-text search for “shared decision making” on journal websites identified 1286 publications in 15 journals compared to 119 through the PubMed search. The search within the publisher-provided publications of 6 journals identified 613 publications compared to 646 with the full-text search on the respective journal websites. The concordance rate was 94.3% between both full-text searches. Conclusions: Full-text searching on medical journal websites is an efficient and reliable way to identify relevant articles in the field of shared decision making for review or other purposes. It may be more widely used in biomedical research in other fields in the future, with the collaboration of publishers and journals toward open-access data. %M 25854180 %R 10.2196/resprot.3615 %U http://www.researchprotocols.org/2015/2/e38/ %U https://doi.org/10.2196/resprot.3615 %U http://www.ncbi.nlm.nih.gov/pubmed/25854180 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 3 %P e68 %T Information Presentation Features and Comprehensibility of Hospital Report Cards: Design Analysis and Online Survey Among Users %A Sander,Uwe %A Emmert,Martin %A Dickel,Jochen %A Meszmer,Nina %A Kolb,Benjamin %+ Institute of Management (IFM), School of Business and Economics, Friedrich-Alexander-University Erlangen-Nuremberg, Lange Gasse 20, Nuremberg, 90403, Germany, 49 911 5302 ext 253, Martin.Emmert@fau.de %K public reporting %K report cards %K information presentation %D 2015 %7 16.03.2015 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 25782186 %R 10.2196/jmir.3414 %U http://www.jmir.org/2015/3/e68/ %U https://doi.org/10.2196/jmir.3414 %U http://www.ncbi.nlm.nih.gov/pubmed/25782186 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 4 %N 1 %P e33 %T Clinical Effect Size of an Educational Intervention in the Home and Compliance With Mobile Phone-Based Reminders for People Who Suffer From Stroke: Protocol of a Randomized Controlled Trial %A Merchán-Baeza,Jose Antonio %A Gonzalez-Sanchez,Manuel %A Cuesta-Vargas,Antonio %+ Universidad de Malaga, C/ Arquitecto Francisco Peñalosa, Ampliación Campus Teatinos, Malaga, 29071, Spain, Malaga, 29071, Spain, 34 951 952 823, acuesta.var@gmail.com %K stroke %K ADL %K environment %K patient adherence %K mobile apps %K mobile health %D 2015 %7 10.03.2015 %9 Protocol %J JMIR Res Protoc %G English %X Background: Stroke is the third-leading cause of death and the leading cause of long-term neurological disability in the world. Cognitive, communication, and physical weakness combined with environmental changes frequently cause changes in the roles, routines, and daily occupations of stroke sufferers. Educational intervention combines didactic and interactive intervention, which combines the best choices for teaching new behaviors since it involves the active participation of the patient in learning. Nowadays, there are many types of interventions or means to increase adherence to treatment. Objective: The aim of this study is to enable patients who have suffered stroke and been discharged to their homes to improve the performance of the activities of daily living (ADL) in their home environment, based on advice given by the therapist. A secondary aim is that these patients continue the treatment through a reminder app installed on their mobile phones. Methods: This study is a clinical randomized controlled trial. The total sample will consist of 80 adults who have suffered a stroke with moderate severity and who have been discharged to their homes in the 3 months prior to recruitment to the study. The following tests and scales will be used to measure the outcome variables: Barthel Index, the Functional Independence Measure, the Mini-Mental State Examination, the Canadian Neurological Scale, the Stroke Impact Scale-16, the Trunk Control Test, the Modified Rankin Scale, the Multidimensional Scale of Perceived Social Support, the Quality of Life Scale for Stroke, the Functional Reach Test, the Romberg Test, the Time Up and Go test, the Timed-Stands Test, a portable dynamometer, and a sociodemographic questionnaire. Descriptive analyses will include mean, standard deviation, and 95% confidence intervals of the values for each variable. The Kolmogov-Smirnov (KS) test and a 2x2 mixed-model analysis of variance (ANOVA) will be used. Intergroup effect sizes will be calculated (Cohen’s d). Results: Currently, the study is in the recruitment phase and implementation of the intervention has begun. The authors anticipate that during 2015 the following processes should be completed: recruitment, intervention, and data collection. It is expected that the analysis of all data and the first results should be available in early-to-mid 2016. Conclusions: An educational intervention based on therapeutic home advice and a reminder app has been developed by the authors with the intention that patients who have suffered stroke perform the ADL more easily and use their affected limbs more actively in the ADL. The use of reminders via mobile phone is proposed as an innovative tool to increase treatment adherence in this population. Trial Registration: ClinicalTrials.gov NCT01980641; https://clinicaltrials.gov/ct2/show/NCT01980641 (Archived by WebCite at http://www.webcitation.org/6WRWFmY6U). %M 25757808 %R 10.2196/resprot.4034 %U http://www.researchprotocols.org/2015/1/e33/ %U https://doi.org/10.2196/resprot.4034 %U http://www.ncbi.nlm.nih.gov/pubmed/25757808 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 2 %P e37 %T Assessment of Unconscious Decision Aids Applied to Complex Patient-Centered Medical Decisions %A Manigault,Andrew Wilhelm %A Handley,Ian Michael %A Whillock,Summer Rain %+ Montana State University, Department of Psychology, 322 Traphagen Hall, Bozeman, MT, 59717, United States, 1 406 994 6508, ihandley@montana.edu %K unconscious %K thought %K intuition %K medical %K decision %K judgment %K cognitive load %K patient-centered %D 2015 %7 05.02.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: To improve patient health, recent research urges for medical decision aids that are designed to enhance the effectiveness of specific medically related decisions. Many such decisions involve complex information, and decision aids that independently use deliberative (analytical and slower) or intuitive (more affective and automatic) cognitive processes for such decisions result in suboptimal decisions. Unconscious thought can arguably use both intuitive and deliberative (slow and analytic) processes, and this combination may further benefit complex patient (or practitioner) decisions as medical decision aids. Indeed, mounting research demonstrates that individuals render better decisions generally if they are distracted from thinking consciously about complex information after it is presented (but can think unconsciously), relative to thinking about that information consciously or not at all. Objective: The current research tested whether the benefits of unconscious thought processes can be replicated using an Internet platform for a patient medical decision involving complex information. This research also explored the possibility that judgments reported after a period of unconscious thought are actually the result of a short period of conscious deliberation occurring during the decision report phase. Methods: A total of 173 participants in a Web-based experiment received information about four medical treatments, the best (worst) associated with mostly positive (negative) side-effects/attributes and the others with equal positive-negative ratios. Next, participants were either distracted for 3 minutes (unconscious thought), instructed to think about the information for 3 minutes (conscious thought), or moved directly to the decision task (immediate decision). Finally, participants reported their choice of, and attitudes toward, the treatments while experiencing high, low, or no cognitive load, which varied their ability to think consciously while reporting judgments. Cognitive load was manipulated by having participants memorize semi-random (high), line structured (low), or no dot patterns and recall these intermittently with their decision reports. Overall then, participants were randomly assigned to the conditions of a 3 (thought condition) by 3 (cognitive-load level) between-subjects design. Results: A logistic regression analysis indicated that the odds of participants choosing the best treatment were 2.25 times higher in the unconscious-thought condition compared to the immediate-decision condition (b=.81, Wald=4.32, P=.04, 95% CI 1.048-4.836), and 2.39 times greater compared to the conscious-thought condition (b=.87, Wald=4.87, P=.027, 95% CI 1.103-5.186). No difference was observed between the conscious-thought condition compared to the immediate-decision condition, and cognitive load manipulations did not affect choices or alter the above finding. Conclusions: This research demonstrates a plausible benefit of unconscious thinking as a decision aid for complex medical decisions, and represents the first use of unconscious thought processes as a patient-centered medical decision aid. Further, the quality of decisions reached unconsciously does not appear to be affected by the amount of cognitive load participants experienced. %M 25677337 %R 10.2196/jmir.3739 %U http://www.jmir.org/2015/2/e37/ %U https://doi.org/10.2196/jmir.3739 %U http://www.ncbi.nlm.nih.gov/pubmed/25677337 %0 Journal Article %@ 1929-073X %I JMIR Publications Inc. %V 4 %N 1 %P e3 %T Information Seeking in Social Media: A Review of YouTube for Sedentary Behavior Content %A Knight,Emily %A Intzandt,Brittany %A MacDougall,Alicia %A Saunders,Travis J %+ University of Western Ontario, Health and Rehabilitation Sciences, 1201 Western Road, London, ON, N6G 1H1, Canada, 1 519 685 4292, eknigh2@uwo.ca %K sedentary lifestyle %K translational medical research %K social media %D 2015 %7 20.01.2015 %9 Review %J Interact J Med Res %G English %X 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. %M 25604433 %R 10.2196/ijmr.3835 %U http://www.i-jmr.org/2015/1/e3/ %U https://doi.org/10.2196/ijmr.3835 %U http://www.ncbi.nlm.nih.gov/pubmed/25604433 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 17 %N 1 %P e11 %T The Effectiveness of Health Animations in Audiences With Different Health Literacy Levels: An Experimental Study %A Meppelink,Corine S %A van Weert,Julia CM %A Haven,Carola J %A Smit,Edith G %+ Amsterdam School of Communication Research/ASCoR, Department of Communication Science, University of Amsterdam, Nieuwe Achtergracht 166, PO Box 15793, 1001 NG, Amsterdam, , Netherlands, 31 20 525 7337, c.s.meppelink@uva.nl %K health literacy %K animation %K medical illustration %K reading %K audiovisual media %K cancer screening %K colorectal cancer %K prevention %K memory %K attitudes %D 2015 %7 13.01.2015 %9 Original Paper %J J Med Internet Res %G English %X Background: Processing Web-based health information can be difficult, especially for people with low health literacy. Presenting health information in an audiovisual format, such as animation, is expected to improve understanding among low health literate audiences. Objective: The aim of this paper is to investigate what features of spoken health animations improve information recall and attitudes and whether there are differences between health literacy groups. Methods: We conducted an online experiment among 231 participants aged 55 years or older with either low or high health literacy. A 2 (spoken vs written text) x 2 (illustration vs animation) design was used. Participants were randomly exposed to one of the four experimental messages, all providing the same information on colorectal cancer screening. Results: The results showed that, among people with low health literacy, spoken messages about colorectal cancer screening improved recall (P=.03) and attitudes (P=.02) compared to written messages. Animations alone did not improve recall, but when combined with spoken text, they significantly improved recall in this group (P=.02). When exposed to spoken animations, people with low health literacy recalled the same amount of information as their high health literate counterparts (P=.12), whereas in all other conditions people with high health literacy recalled more information compared to low health literate individuals. For people with low health literacy, positive attitudes mediated the relationship between spoken text and the intention to have a colorectal cancer screening (b=.12; 95% CI 0.02-0.25). Conclusions: We conclude that spoken animation is the best way to communicate complex health information to people with low health literacy. This format can even bridge the information processing gap between audiences with low and high health literacy as the recall differences between the two groups are eliminated. As animations do not negatively influence high health literate audiences, it is concluded that information adapted to audiences with low health literacy suits people with high health literacy as well. %M 25586711 %R 10.2196/jmir.3979 %U http://www.jmir.org/2015/1/e11/ %U https://doi.org/10.2196/jmir.3979 %U http://www.ncbi.nlm.nih.gov/pubmed/25586711 %0 Journal Article %@ 2291-9694 %I Gunther Eysenbach %V 3 %N 1 %P e3 %T Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research %A Williams,Hawys %A Spencer,Karen %A Sanders,Caroline %A Lund,David %A Whitley,Edgar A %A Kaye,Jane %A Dixon,William G %+ Arthritis Research UK Centre for Epidemiology, University of Manchester, Stopford Building, Oxford Rd, Manchester, M13 9PT, United Kingdom, 44 2751642, Will.Dixon@manchester.ac.uk %K dynamic consent %K electronic patient record (EPR) %K medical research %K confidentiality %K privacy %K governance %K NHS %K data linkage %K care.data %D 2015 %7 13.01.2015 %9 Viewpoint %J JMIR Med Inform %G English %X With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England’s care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit. %M 25586934 %R 10.2196/medinform.3525 %U http://medinform.jmir.org/2015/1/e3/ %U https://doi.org/10.2196/medinform.3525 %U http://www.ncbi.nlm.nih.gov/pubmed/25586934 %0 Journal Article %@ 2368-7959 %I JMIR Publications Inc. %V 1 %N 1 %P e4 %T Randomized Comparison of Mobile and Web-Tools to Provide Dementia Risk Reduction Education: Use, Engagement and Participant Satisfaction %A O'Connor,Elodie %A Farrow,Maree %A Hatherly,Chris %+ Alzheimer's Australia, 155 Oak St, Parkville, 3052, Australia, 61 3 9816 5795, maree.farrow@alzheimers.org.au %K dementia %K Alzheimer %K engagement %K health communication %K Internet %K intervention %K mobile phone %K risk reduction behavior %K user perceptions %K mhealth %D 2014 %7 22.12.2014 %9 Original Paper %J JMIR Mental Health %G English %X Background: Encouraging middle-aged adults to maintain their physical and cognitive health may have a significant impact on reducing the prevalence of dementia in the future. Mobile phone apps and interactive websites may be one effective way to target this age group. However, to date there has been little research investigating the user experience of dementia risk reduction tools delivered in this way. Objective: The aim of this study was to explore participant engagement and evaluations of three different targeted smartphone and Web-based dementia risk reduction tools following a four-week intervention. Methods: Participants completed a Web-based screening questionnaire to collect eligibility information. Eligible participants were asked to complete a Web-based baseline questionnaire and were then randomly assigned to use one of the three dementia risk reduction tools for a period of four weeks: (1) a mobile phone application; (2) an information-based website; and (3) an interactive website. User evaluations were obtained via a Web-based follow-up questionnaire after completion of the intervention. Results: Of 415 eligible participants, 370 (89.16%) completed the baseline questionnaire and were assigned to an intervention group; 200 (54.05%) completed the post-intervention questionnaire. The average age of participants was 52 years, and 149 (75%) were female. Findings indicated that participants from all three intervention groups reported a generally positive impression of the tools across a range of domains. Participants using the information-based website reported higher ratings of their overall impression of the tool, F2,191=4.12, P=.02; how interesting the information was, F2,189=3.53, P=.03; how helpful the information was, F2,192=4.15, P=.02; and how much they learned, F2,188=3.86, P=.02. Group differences were significant between the mobile phone app and information-based website users, but not between the interactive website users and the other two groups. Additionally, participants using the information-based website reported significantly higher scores on their ratings of the ease of navigation, F2,190=4.20, P=.02, than those using the mobile phone app and the interactive website. There were no significant differences between groups on ratings of ease of understanding the information, F2,188=0.27, P=.76. Most participants from each of the three intervention groups indicated that they intended to keep using the dementia risk reduction eHealth tool. Conclusions: Overall, results indicated that while participants across all three intervention groups reported a generally positive experience with the targeted dementia risk reduction tools, participants using the information-based website provided a more favorable evaluation across a range of areas than participants using the mobile phone app. Further research is required to investigate whether targeted dementia risk reduction tools, in the form of interactive websites and mobile apps, can be improved to provide benefits above those gained by providing static information alone. %M 26543904 %R 10.2196/mental.3654 %U http://mental.jmir.org/2014/1/e4/ %U https://doi.org/10.2196/mental.3654 %U http://www.ncbi.nlm.nih.gov/pubmed/26543904 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 3 %N 4 %P e72 %T Design and Usage of the HeartCycle Education and Coaching Program for Patients With Heart Failure %A Stut,Wim %A Deighan,Carolyn %A Armitage,Wendy %A Clark,Michelle %A Cleland,John G %A Jaarsma,Tiny %+ Philips Research, High Tech Campus 34, Eindhoven, 5656 AE, Netherlands, 31 402796465, wim.stut@philips.com %K e-counseling %K heart failure %K lifestyle %K patient adherence %K self-care %K telehealth %D 2014 %7 11.12.2014 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Heart failure (HF) is common, and it is associated with high rates of hospital readmission and mortality. It is generally assumed that appropriate self-care can improve outcomes in patients with HF, but patient adherence to many self-care behaviors is poor. Objective: The objective of our study was to develop and test an intervention to increase self-care in patients with HF using a novel, online, automated education and coaching program. Methods: The online automated program was developed using a well-established, face-to-face, home-based cardiac rehabilitation approach. Education is tailored to the behaviors and knowledge of the individual patient, and the system supports patients in adopting self-care behaviors. Patients are guided through a goal-setting process that they conduct at their own pace through the support of the system, and they record their progress in an electronic diary such that the system can provide appropriate feedback. Only in challenging situations do HF nurses intervene to offer help. The program was evaluated in the HeartCycle study, a multicenter, observational trial with randomized components in which researchers investigated the ability of a third-generation telehealth system to enhance the management of patients with HF who had a recent (<60 days) admission to the hospital for symptoms or signs of HF (either new onset or recurrent) or were outpatients with persistent New York Heart Association (NYHA) functional class III/IV symptoms despite treatment with diuretic agents. The patients were enrolled from January 2012 through February 2013 at 3 hospital sites within the United Kingdom, Germany, and Spain. Results: Of 123 patients enrolled (mean age 66 years (SD 12), 66% NYHA III, 79% men), 50 patients (41%) reported that they were not physically active, 56 patients (46%) did not follow a low-salt diet, 6 patients (5%) did not restrict their fluid intake, and 6 patients (5%) did not take their medication as prescribed. About 80% of the patients who started the coaching program for physical activity and low-salt diet became adherent by achieving their personal goals for 2 consecutive weeks. After becoming adherent, 61% continued physical activity coaching, but only 36% continued low-salt diet coaching. Conclusions: The HeartCycle education and coaching program helped most nonadherent patients with HF to adopt recommended self-care behaviors. Automated coaching worked well for most patients who started the coaching program, and many patients who achieved their goals continued to use the program. For many patients who did not engage in the automated coaching program, their choice was appropriate rather than a failure of the program. %M 25499976 %R 10.2196/resprot.3411 %U http://www.researchprotocols.org/2014/4/e72/ %U https://doi.org/10.2196/resprot.3411 %U http://www.ncbi.nlm.nih.gov/pubmed/25499976 %0 Journal Article %@ 1929-0748 %I JMIR Publications Inc. %V 3 %N 4 %P e61 %T Increasing User Involvement in Health Care and Health Research Simultaneously: A Proto-Protocol for "Person-as-Researcher" and Online Decision Support Tools %A Kaltoft,Mette Kjer %A Nielsen,Jesper Bo %A Salkeld,Glenn %A Dowie,Jack %+ Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, 15-17 Tavistock Place, London, WC1H 9SH, United Kingdom, 44 2079272034, jack.dowie@lshtm.ac.uk %K user involvement %K decision support %K patient empowerment %K Internet %D 2014 %7 25.11.2014 %9 Protocol %J JMIR Res Protoc %G English %X Background: User involvement is appearing increasingly on policy agendas in many countries, with a variety of proposals for facilitating it. The belief is that it will produce better health for individuals and community, as well as demonstrate greater respect for the basic principles of autonomy and democracy. Objective: Our Web-based project aims to increase involvement in health care and health research and is presented in the form of an umbrella protocol for a set of project-specific protocols. We conceptualize the person as a researcher engaged in a continual, living, informal “n-of-1”-type study of the effects of different actions and interventions on their health, including those implying contact with health care services. We see their research as primarily carried out in order to make better decisions for themselves, but they can offer to contribute the results to the wider population. We see the efforts of the "person-as-researcher" as contributing to the total amount of research undertaken in the community, with research not being confined to that undertaken by professional researchers and institutions. This view is fundamentally compatible with both the emancipatory and conventional approaches to increased user involvement, though somewhat more aligned with the former. Methods: Our online decision support tools, delivered directly to the person in the community and openly accessible, are to be seen as research resources. They will take the form of interactive decision aids for a variety of specific health conditions, as well as a generic one that supports all health and health care decisions through its focus on key aspects of decision quality. We present a high-level protocol for the condition-specific studies that will implement our approach, organized within the Populations, Interventions, Comparators, Outcomes, Timings, and Settings (PICOTS) framework. Results: Our underlying hypothesis concerns the person-as-researcher who is equipped with a prescriptive, transparent, expected value-based opinion—an opinion that combines their criterion importance weights with the Best Estimates Available Now for how well each of the available options performs on each of those outcomes. The hypothesis is that this person-as-researcher is more likely to be able to position themselves as an active participant in a clinical encounter, if they wish, than someone who has engaged with a descriptive decision aid that attempts to work with their existing cognitive processes and stresses the importance of information. The precise way this hypothesis is tested will be setting-specific and condition-specific and will be spelled out in the individual project protocols. Conclusions: Decision resources that provide fast access to the results of slower thinking can provide the stimulus that many individuals need to take a more involved role in their own health. Our project, advanced simply as one approach to increased user involvement, is designed to make progress in the short term with minimal resources and to do so at the point of decision need, when motivation is highest. Some basic distinctions, such as those between science and non-science, research and practice, community and individual, and lay and professional become somewhat blurred and may need to be rethought in light of this approach. %M 25424354 %R 10.2196/resprot.3690 %U http://www.researchprotocols.org/2014/4/e61/ %U https://doi.org/10.2196/resprot.3690 %U http://www.ncbi.nlm.nih.gov/pubmed/25424354 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 10 %P e211 %T Supporting Health Care Professionals to Improve the Processes of Shared Decision Making and Self-Management in a Web-Based Intervention: Randomized Controlled Trial %A Sassen,Barbara %A Kok,Gerjo %A Schepers,Jan %A Vanhees,Luc %+ Faculty of Health Care, Innovation in Health Care, University of Applied Sciences, Bolognalaan 101, Utrecht, 3584 CJ, Netherlands, 31 300884815032, Barbara.sassen@hu.nl %K Web-based intervention %K health professionals %K RCT %K self-management %K barriers %D 2014 %7 21.10.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: Research to assess the effect of interventions to improve the processes of shared decision making and self-management directed at health care professionals is limited. Using the protocol of Intervention Mapping, a Web-based intervention directed at health care professionals was developed to complement and optimize health services in patient-centered care. Objective: The objective of the Web-based intervention was to increase health care professionals’ intention and encouraging behavior toward patient self-management, following cardiovascular risk management guidelines. Methods: A randomized controlled trial was used to assess the effect of a theory-based intervention, using a pre-test and post-test design. The intervention website consisted of a module to help improve professionals’ behavior, a module to increase patients’ intention and risk-reduction behavior toward cardiovascular risk, and a parallel module with a support system for the health care professionals. Health care professionals (n=69) were recruited online and randomly allocated to the intervention group (n=26) or (waiting list) control group (n=43), and invited their patients to participate. The outcome was improved professional behavior toward health education, and was self-assessed through questionnaires based on the Theory of Planned Behavior. Social-cognitive determinants, intention and behavior were measured pre-intervention and at 1-year follow-up. Results: The module to improve professionals’ behavior was used by 45% (19/42) of the health care professionals in the intervention group. The module to support the health professional in encouraging behavior toward patients was used by 48% (20/42). The module to improve patients’ risk-reduction behavior was provided to 44% (24/54) of patients. In 1 of every 5 patients, the guideline for cardiovascular risk management was used. The Web-based intervention was poorly used. In the intervention group, no differences in social-cognitive determinants, intention and behavior were found for health care professionals, compared with the control group. We narrowed the intervention group and no significant differences were found in intention and behavior, except for barriers. Results showed a significant overall difference in barriers between the intervention and the control group (F1=4.128, P=.02). Conclusions: The intervention was used by less than half of the participants and did not improve health care professionals’ and patients’ cardiovascular risk-reduction behavior. The website was not used intensively because of time and organizational constraints. Professionals in the intervention group experienced higher levels of barriers to encouraging patients, than professionals in the control group. No improvements were detected in the processes of shared decision making and patient self-management. Although participant education level was relatively high and the intervention was pre-tested, it is possible that the way the information was presented could be the reason for low participation and high dropout. Further research embedded in professionals’ regular consultations with patients is required with specific emphasis on the processes of dissemination and implementation of innovations in patient-centered care. Trial Registration: Netherlands Trial Register Number (NTR): NTR2584; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2584 (Archived by WebCite at http://www.webcitation.org/6STirC66r). %M 25337988 %R 10.2196/jmir.3170 %U http://www.jmir.org/2014/10/e211/ %U https://doi.org/10.2196/jmir.3170 %U http://www.ncbi.nlm.nih.gov/pubmed/25337988 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 9 %P e202 %T A Medical Consultation Service on Facebook: Descriptive Analysis of Questions Answered %A Helve,Otto %+ Children's Hospital, Helsinki University Central Hospital, University of Helsinki, Stenbäckinkatu 11, PB 281, Helsinki, 00029 HUS, Finland, 358 505824426, otto.helve@helsinki.fi %K social media %K Internet %K health information %K health promotion %D 2014 %7 04.09.2014 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 25189182 %R 10.2196/jmir.3194 %U http://www.jmir.org/2014/9/e202/ %U https://doi.org/10.2196/jmir.3194 %U http://www.ncbi.nlm.nih.gov/pubmed/25189182 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 8 %P e197 %T Massive Open Online Courses on Health and Medicine: Will They Be Sustainable? %A Walsh,Kieran %+ BMJ Learning, Tavistock Square, London, WC1H 9JR, United Kingdom, 44 447985755333, kmwalsh@bmjgroup.com %D 2014 %7 25.08.2014 %9 Letter to the Editor %J J Med Internet Res %G English %X %M 25154793 %R 10.2196/jmir.3798 %U http://www.jmir.org/2014/8/e197/ %U https://doi.org/10.2196/jmir.3798 %U http://www.ncbi.nlm.nih.gov/pubmed/25154793 %0 Journal Article %@ 2291-5222 %I JMIR Publications Inc. %V 2 %N 3 %P e35 %T ClereMed: Lessons Learned From a Pilot Study of a Mobile Screening Tool to Identify and Support Adults Who Have Difficulty With Medication Labels %A Grindrod,Kelly Anne %A Gates,Allison %A Dolovich,Lisa %A Slavcev,Roderick %A Drimmie,Rob %A Aghaei,Behzad %A Poon,Calvin %A Khan,Shamrozé %A Leat,Susan J %+ School of Pharmacy, University of Waterloo, 200 University Avenue West, Waterloo, ON, N2L3G1, Canada, 1 519 888 4567 ext 21358, kgrindrod@uwaterloo.ca %K low vision %K legibility %K prescription labelling %K medication labels %K usability %K cognitive impairment %K visual impairment %D 2014 %7 15.08.2014 %9 Original Paper %J JMIR mHealth uHealth %G English %X Background: In order to take medications safely and effectively, individuals need to be able to see, read, and understand the medication labels. However, one-half of medication labels are currently misunderstood, often because of low literacy, low vision, and cognitive impairment. We sought to design a mobile tool termed ClereMed that could rapidly screen for adults who have difficulty reading or understanding their medication labels. Objective: The aim of this study was to build the ClereMed prototype; to determine the usability of the prototype with adults 55 and over; to assess its accuracy for identifying adults with low-functional reading ability, poor ability on a real-life pill-sorting task, and low cognition; and to assess the acceptability of a touchscreen device with older adults with age-related changes to vision and cognition. Methods: This pilot study enrolled adults (≥55 years) who were recruited through pharmacies, retirement residences, and a low-vision optometry clinic. ClereMed is a hypertext markup language (HTML)-5 prototype app that simulates medication taking using an iPad, and also provides information on how to improve the accessibility of prescription labels. A paper-based questionnaire included questions on participant demographics, computer literacy, and the Systems Usability Scale (SUS). Cognition was assessed using the Montreal Cognitive Assessment tool, and functional reading ability was measured using the MNRead Acuity Chart. Simulation results were compared with a real-life, medication-taking exercise using prescription vials, tablets, and pillboxes. Results: The 47 participants had a mean age of 76 (SD 11) years and 60% (28/47) were female. Of the participants, 32% (15/47) did not own a computer or touchscreen device. The mean SUS score was 76/100. ClereMed correctly identified 72% (5/7) of participants with functional reading difficulty, and 63% (5/8) who failed a real-life pill-sorting task, but only 21% (6/28) of participants with cognitive impairment. Participants who owned a computer or touchscreen completed ClereMed in a mean time of 26 (SD 16) seconds, compared with 52 (SD 34) seconds for those who do not own a device (P<.001). Those who had difficulty, struggled with screen glare, button activation, and the “drag and drop” function. Conclusions: ClereMed was well accepted by older participants, but it was only moderately accurate for reading ability and not for mild cognitive impairment. Future versions may be most useful as part of a larger medication assessment or as a tool to help family members and caregivers identify individuals with impaired functional reading ability. Future research is needed to improve the sensitivity for measuring cognitive impairment and on the feasibility of implementing a mobile app into pharmacy workflow. %M 25131813 %R 10.2196/mhealth.3250 %U http://mhealth.jmir.org/2014/3/e35/ %U https://doi.org/10.2196/mhealth.3250 %U http://www.ncbi.nlm.nih.gov/pubmed/25131813 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 8 %P e191 %T Massive Open Online Courses on Health and Medicine: Review %A Liyanagunawardena,Tharindu Rekha %A Williams,Shirley Ann %+ School of Systems Engineering, University of Reading, Whiteknights, Reading, RG6 6AY, United Kingdom, 44 118 378 6423, t.r.liyanagunawardena@reading.ac.uk %K eLearning %K education %K health education %K continuing education %K computer-assisted instruction %D 2014 %7 14.08.2014 %9 Review %J J Med Internet Res %G English %X Background: Massive open online courses (MOOCs) have become immensely popular in a short span of time. However, there is very little research exploring MOOCs in the discipline of health and medicine. Objective: We aim to provide a review of MOOCs related to health and medicine offered by various MOOC platforms in 2013, by analyzing and comparing the various offerings, their target audience, typical length of course, and credentials offered. We also discuss opportunities and challenges presented by MOOCs in health and medicine. Methods: Health and medicine–related MOOCs were gathered using several methods to ensure the richness and completeness of data. Identified MOOC platform websites were used to gather the lists of offerings. In parallel, these MOOC platforms were contacted to access official data on their offerings. Two MOOC aggregator sites (Class Central and MOOC List) were also consulted to gather data on MOOC offerings. Eligibility criteria were defined to concentrate on the courses that were offered in 2013 and primarily on the subject of health and medicine. All language translations in this paper were done using Google Translate. Results: The search identified 225 courses, of which 98 were eligible for the review. Over half (58%, 57/98) of the MOOCs considered were offered on the Coursera platform, and 94% (92/98) of all the MOOCs were offered in English. Universities offered 90 MOOCs, and the John Hopkins University offered the largest number of MOOCs (12/90). Only three MOOCs were offered by developing countries (China, West Indies, and Saudi Arabia). The duration of MOOCs varied from 3-20 weeks with an average length of 6.7 weeks. On average, MOOCs expected a participant to work on the material for 4.2 hours a week. Verified certificates were offered by 14 MOOCs, while three others offered other professional recognition. Conclusions: The review presents evidence to suggest that MOOCs can be used as a way to provide continuous medical education. It also shows the potential of MOOCs as a means of increasing health literacy among the public. %M 25123952 %R 10.2196/jmir.3439 %U http://www.jmir.org/2014/8/e191/ %U https://doi.org/10.2196/jmir.3439 %U http://www.ncbi.nlm.nih.gov/pubmed/25123952 %0 Journal Article %@ 2291-9279 %I JMIR Publications Inc. %V 2 %N 2 %P e10 %T Diabetes Island: Preliminary Impact of a Virtual World Self-Care Educational Intervention for African Americans With Type 2 Diabetes %A Ruggiero,Laurie %A Moadsiri,Ada %A Quinn,Lauretta T %A Riley,Barth B %A Danielson,Kirstie K %A Monahan,Colleen %A Bangs,Valerie A %A Gerber,Ben S %+ Institute for Health Research and Policy and Division of Community Health Sciences, School of Public Health, University of Illinois at Chicago, Institute for Health Research and Policy, 1747 W Roosevelt Road (MC 275), Chicago, IL, 60608, United States, 1 312 413 9825, lruggier@uic.edu %K minority group %K type 2 diabetes mellitus %K self-management %D 2014 %7 08.08.2014 %9 Original Paper %J JMIR Serious Games %G English %X Background: Diabetes is a serious worldwide public health challenge. The burden of diabetes, including prevalence and risk of complications, is greater for minorities, particularly African Americans. Internet-based immersive virtual worlds offer a unique opportunity to reach large and diverse populations with diabetes for self-management education and support. Objective: The objective of the study was to examine the acceptability, usage, and preliminary outcome of a virtual world intervention, Diabetes Island, in low-income African Americans with type 2 diabetes. The main hypotheses were that the intervention would: (1) be perceived as acceptable and useful; and (2) improve diabetes self-care (eg, behaviors and barriers) and self-care related outcomes, including glycemic control (A1C), body mass index (BMI), and psychosocial factors (ie, empowerment and distress) over six months. Methods: The evaluation of the intervention impact used a single-group repeated measures design, including three assessment time points: (1) baseline, (2) 3 month (mid intervention), and (3) 6 month (immediate post intervention). Participants were recruited from a university primary care clinic. A total of 41 participants enrolled in the 6 month intervention study. The intervention components included: (1) a study website for communication, feedback, and tracking; and (2) access to an immersive virtual world (Diabetes Island) through Second Life, where a variety of diabetes self-care education activities and resources were available. Outcome measures included A1C, BMI, self-care behaviors, barriers to adherence, eating habits, empowerment, and distress. In addition, acceptability and usage were examined. A series of mixed-effects analyses, with time as a single repeated measures factor, were performed to examine preliminary outcomes. Results: The intervention study sample (N=41) characteristics were: (1) mean age of 55 years, (2) 71% (29/41) female, (3) 100% (41/41) African American, and (4) 76% (31/41) reported annual incomes below US $20,000. Significant changes over time in the expected direction were observed for BMI (P<.02); diabetes-related distress (P<.02); global (P<.01) and dietary (P<.01) environmental barriers to self-care; one physical activity subscale (P<.04); and one dietary intake (P<.01) subscale. The participant feedback regarding the intervention (eg, ease of use, interest, and perceived impact) was consistently positive. The usage patterns showed that the majority of participants logged in regularly during the first two months, and around half logged in each week on average across the six month period. Conclusions: This study demonstrated promising initial results of an immersive virtual world approach to reaching underserved individuals with diabetes to deliver diabetes self-management education. This intervention model and method show promise and could be tailored for other populations. A large scale controlled trial is needed to further examine efficacy. %M 25584346 %R 10.2196/games.3260 %U http://games.jmir.org/2014/2/e10/ %U https://doi.org/10.2196/games.3260 %U http://www.ncbi.nlm.nih.gov/pubmed/25584346 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 8 %P e187 %T Numeracy and Literacy Independently Predict Patients’ Ability to Identify Out-of-Range Test Results %A Zikmund-Fisher,Brian J %A Exe,Nicole L %A Witteman,Holly O %+ Department of Health Behavior and Health Education, University of Michigan, 1415 Washington Heights, Ann Arbor, MI, 48109, United States, 1 7349369179, bzikmund@umich.edu %K numeracy %K literacy %K patient education as topic %K electronic health records %D 2014 %7 08.08.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: Increasing numbers of patients have direct access to laboratory test results outside of clinical consultations. This offers increased opportunities for both self-management of chronic conditions and advance preparation for clinic visits if patients are able to identify test results that are outside the reference ranges. Objective: Our objective was to assess whether adults can identify laboratory blood test values outside reference ranges when presented in a format similar to some current patient portals implemented within electronic health record (EHR) systems. Methods: In an Internet-administered survey, adults aged 40-70 years, approximately half with diabetes, were asked to imagine that they had type 2 diabetes. They were shown laboratory test results displayed in a standard tabular format. We randomized hemoglobin A1c values to be slightly (7.1%) or moderately (8.4%) outside the reference range and randomized other test results to be within or outside their reference ranges (ie, multiple deviations). We assessed (1) whether respondents identified the hemoglobin A1c level as outside the reference range, (2) how respondents rated glycemic control, and (3) whether they would call their doctor. We also measured numeracy and health literacy. Results: Among the 1817 adult participants, viewing test results with multiple deviations increased the probability of identifying hemoglobin A1c values as outside the reference range (participants with diabetes: OR 1.47, 95% CI 1.12-1.92, P=.005; participants without diabetes: OR 1.50, 95% CI 1.13-2.00, P=.005). Both numeracy and health literacy were significant predictors of correctly identifying out-of-range values. For participants with diabetes, numeracy OR 1.32 per unit on a 1-6 scale (95% CI 1.15-1.51, P<.001) and literacy OR 1.59 per unit of a 1-5 scale (95% CI 1.35-1.87, P<.001); for participants without diabetes, numeracy OR 1.36 per unit (95% CI 1.17-1.58, P<.001) and literacy OR 1.33 per unit (95% CI 1.12-1.58, P=.001). Predicted probabilities suggested 77% of higher numeracy and health literacy participants, but only 38% of lower numeracy and literacy participants, could correctly identify the hemoglobin A1c levels as outside the reference range. Correct identification reduced perceived blood glucose control (mean difference 1.68-1.71 points on a 0-10 scale, P<.001). For participants with diabetes, increased health literacy reduced the likelihood of calling one’s doctor when hemoglobin A1c=7.1% (OR 0.66 per unit, 95% CI 0.52-0.82, P<.001) and increased numeracy increased intention to call when hemoglobin A1c=8.4% (OR 1.36 per unit, 95% CI 1.10-1.69, P=.005). Conclusions: Limited health literacy and numeracy skills are significant barriers to basic use of laboratory test result data as currently presented in some EHR portals. Regarding contacting their doctor, less numerate and literate participants with diabetes appear insensitive to the hemoglobin A1c level shown, whereas highly numerate and literate participants with diabetes appear very sensitive. Alternate approaches appear necessary to make test results more meaningful. %M 25135688 %R 10.2196/jmir.3241 %U http://www.jmir.org/2014/8/e187/ %U https://doi.org/10.2196/jmir.3241 %U http://www.ncbi.nlm.nih.gov/pubmed/25135688 %0 Journal Article %@ 1929-073X %I JMIR Publications Inc. %V 3 %N 3 %P e12 %T Web Search Behavior and Information Needs of People With Multiple Sclerosis: Focus Group Study and Analysis of Online Postings %A Colombo,Cinzia %A Mosconi,Paola %A Confalonieri,Paolo %A Baroni,Isabella %A Traversa,Silvia %A Hill,Sophie J %A Synnot,Anneliese J %A Oprandi,Nadia %A Filippini,Graziella %+ IRCCS-Mario Negri Institute for Pharmacological Research, Milano, Italy, Department of Public Health, Laboratory for medical research and consumer involvement, Via La Masa 19, Milano, 20156, Italy, 39 0239014503, paola.mosconi@marionegri.it %K multiple sclerosis %K evidence-based information %K information needs %K Web search behavior %K Internet %K patients’ involvement %D 2014 %7 24.07.2014 %9 Original Paper %J Interact J Med Res %G English %X Background: Multiple sclerosis (MS) patients and their family members increasingly seek health information on the Internet. There has been little exploration of how MS patients integrate health information with their needs, preferences, and values for decision making. The INtegrating and Deriving Evidence, Experiences, and Preferences (IN-DEEP) project is a collaboration between Italian and Australian researchers and MS patients, aimed to make high-quality evidence accessible and meaningful to MS patients and families, developing a Web-based resource of evidence-based information starting from their information needs. Objective: The objective of this study was to analyze MS patients and their family members’ experience about the Web-based health information, to evaluate how they asses this information, and how they integrate health information with personal values. Methods: We organized 6 focus groups, 3 with MS patients and 3 with family members, in the Northern, Central, and Southern parts of Italy (April-June 2011). They included 40 MS patients aged between 18 and 60, diagnosed as having MS at least 3 months earlier, and 20 family members aged 18 and over, being relatives of a person with at least a 3-months MS diagnosis. The focus groups were audio-recorded and transcribed verbatim (Atlas software, V 6.0). Data were analyzed from a conceptual point of view through a coding system. An online forum was hosted by the Italian MS society on its Web platform to widen the collection of information. Nine questions were posted covering searching behavior, use of Web-based information, truthfulness of Web information. At the end, posts were downloaded and transcribed. Results: Information needs covered a comprehensive communication of diagnosis, prognosis, and adverse events of treatments, MS causes or risk factors, new drugs, practical, and lifestyle-related information. The Internet is considered useful by MS patients, however, at the beginning or in a later stage of the disease a refusal to actively search for information could occur. Participants used to search on the Web before or after their neurologist’s visit or when a new therapy was proposed. Social networks are widely used to read others’ stories and retrieve information about daily management. A critical issue was the difficulty of recognizing reliable information on the Web. Many sources were used but the neurologist was mostly the final source of treatment decisions. Conclusions: MS patients used the Internet as a tool to integrate information about the illness. Information needs covered a wide spectrum, the searched topics changed with progression of the disease. Criteria for evaluating Internet accuracy and credibility of information were often lacking or generic. This may limit the empowerment of patients in health care choices. %M 25093374 %R 10.2196/ijmr.3034 %U http://www.i-jmr.org/2014/3/e12/ %U https://doi.org/10.2196/ijmr.3034 %U http://www.ncbi.nlm.nih.gov/pubmed/25093374 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 6 %P e138 %T Designing for Psychological Change: Individuals’ Reward and Cost Valuations in Weight Management %A Hsu,Anne %A Blandford,Ann %+ School of Electronic Engineering and Computer Science, Queen Mary, University of London, Mile End Road, London, E1 4NS, United Kingdom, 44 77 2206 2525, anne.hsu@eecs.qmul.ac.uk %K design %K human-centered computing %K behavior %K psychology %K interaction design process and methods %K weight loss %K health promotion %D 2014 %7 26.06.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: Knowledge of the psychological constructs that underlie behavior offers valuable design opportunities for persuasive systems. We use the decision theory, which describes how behavior is underpinned by reward-cost valuations, as a framework for investigating such psychological constructs to deliver design objectives for weight management technologies. Objective: We applied a decision theory–based analysis in the domain of weight management to understand the rewards and costs that surround individuals’ weight management behaviors, with the aim of uncovering design opportunities for weight management technologies. Methods: We conducted qualitative interviews with 15 participants who were or had been trying to lose weight. Thematic analysis was used to extract themes that covered the rewards and costs surrounding weight management behaviors. We supplemented our qualitative study with a quantitative survey of 100 respondents investigating the extent to which they agreed with statements reflecting themes from the qualitative study. Results: The primary obstacles to weight management were the rewards associated with unhealthy choices, such as the pleasures of unhealthy foods and unrestricted consumption in social situations, and the significant efforts required to change habits, plan, and exercise. Psychological constructs that supported positive weight management included feeling good after making healthy choices, being good to oneself, experiencing healthy yet still delicious foods, and receiving social support and encouraging messages (although opinions about encouraging messages was mixed). Conclusions: A rewards-costs driven enquiry revealed a wide range of psychological constructs that contribute to discouraging and supporting weight management. The constructs extracted from our qualitative study were verified by our quantitative survey, in which the majority of respondents also reported similar thoughts and feelings. This understanding of the rewards and costs surrounding weight management offers a range of new opportunities for the design of weight management technologies that enhance the encouraging factors and alleviate the discouraging ones. %M 24972304 %R 10.2196/jmir.3009 %U http://www.jmir.org/2014/6/e138/ %U https://doi.org/10.2196/jmir.3009 %U http://www.ncbi.nlm.nih.gov/pubmed/24972304 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 6 %P e158 %T Click “Like” to Change Your Behavior: A Mixed Methods Study of College Students’ Exposure to and Engagement With Facebook Content Designed for Weight Loss %A Merchant,Gina %A Weibel,Nadir %A Patrick,Kevin %A Fowler,James H %A Norman,Greg J %A Gupta,Anjali %A Servetas,Christina %A Calfas,Karen %A Raste,Ketaki %A Pina,Laura %A Donohue,Mike %A Griswold,William G %A Marshall,Simon %+ Center for Wireless and Population Health Systems, The Qualcomm Institute/Calit2, Department of Family and Preventive Medicine, University of California San Diego, Center for Wireless and Population Health Systems, Calit2, 6th Floor, Room 6105, 9500 Gilman Drive #0436, La Jolla, CA, , United States, 1 858 246 1371, gmerchant@ucsd.edu %K overweight %K obesity %K students %K social networking %K behavior %K social behavior %D 2014 %7 24.06.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: Overweight or obesity is prevalent among college students and many gain weight during this time. Traditional face-to-face weight loss interventions have not worked well in this population. Facebook is an attractive tool for delivering weight loss interventions for college students because of its popularity, potential to deliver strategies found in successful weight loss interventions, and ability to support ongoing adaptation of intervention content. Objective: The objective of this study was to describe participant exposure to a Facebook page designed to deliver content to overweight/obese college students in a weight loss randomized controlled trial (N=404) and examine participant engagement with behavior change campaigns for weight loss delivered via Facebook. Methods: The basis of the intervention campaign model were 5 self-regulatory techniques: intention formation, action planning, feedback, goal review, and self-monitoring. Participants were encouraged to engage their existing social network to meet their weight loss goals. A health coach moderated the page and modified content based on usage patterns and user feedback. Quantitative analyses were conducted at the Facebook post- and participant-level of analysis. Participant engagement was quantified by Facebook post type (eg, status update) and interaction (eg, like) and stratified by weight loss campaign (sequenced vs nonsequenced). A subset of participants were interviewed to evaluate the presence of passive online engagement or “lurking.” Results: The health coach posted 1816 unique messages to the study’s Facebook page over 21 months, averaging 3.45 posts per day (SD 1.96, range 1-13). In all, 72.96% (1325/1816) of the posts were interacted with at least once (eg, liked). Of these, approximately 24.75% (328/1325) had 1-2 interactions, 23.39% (310/1325) had 3-5 interactions, 25.13% (333/1325) had 6-8 interactions, and 41 posts had 20 or more interactions (3.09%, 41/1325). There was significant variability among quantifiable (ie, visible) engagement. Of 199 participants in the final intervention sample, 32 (16.1%) were highly active users and 62 (31.2%) never visibly engaged with the intervention on Facebook. Polls were the most popular type of post followed by photos, with 97.5% (79/81) and 80.3% (386/481) interacted with at least once. Participants visibly engaged less with posts over time (partial r=–.33; P<.001). Approximately 40% of the participants interviewed (12/29, 41%) reported passively engaging with the Facebook posts by reading but not visibly interacting with them. Conclusions: Facebook can be used to remotely deliver weight loss intervention content to college students with the help of a health coach who can iteratively tailor content and interact with participants. However, visible engagement with the study’s Facebook page was highly variable and declined over time. Whether the level of observed engagement is meaningful in terms of influencing changes in weight behaviors and outcomes will be evaluated at the completion of the overall study. %M 24964294 %R 10.2196/jmir.3267 %U http://www.jmir.org/2014/6/e158/ %U https://doi.org/10.2196/jmir.3267 %U http://www.ncbi.nlm.nih.gov/pubmed/24964294 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 6 %P e147 %T Paging “Dr. Google”: Does Technology Fill the Gap Created by the Prenatal Care Visit Structure? Qualitative Focus Group Study With Pregnant Women %A Kraschnewski,Jennifer L %A Chuang,Cynthia H %A Poole,Erika S %A Peyton,Tamara %A Blubaugh,Ian %A Pauli,Jaimey %A Feher,Alyssa %A Reddy,Madhu %+ Penn State University College of Medicine, 500 University Drive, HO34, Hershey, PA, 17036, United States, 1 717 531 8161, jkraschnewski@hmc.psu.edu %K qualitative research %K prenatal care %K pregnancy resources %K Women, Infants, and Children Program %K mhealth %K mobile phones %K smartphones %K Internet %K patient education %K consumer health informatics %D 2014 %7 03.06.2014 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 24892583 %R 10.2196/jmir.3385 %U http://www.jmir.org/2014/6/e147/ %U https://doi.org/10.2196/jmir.3385 %U http://www.ncbi.nlm.nih.gov/pubmed/24892583 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 16 %N 3 %P e89 %T Smartphone Apps for Cardiopulmonary Resuscitation Training and Real Incident Support: A Mixed-Methods Evaluation Study %A Kalz,Marco %A Lenssen,Niklas %A Felzen,Marc %A Rossaint,Rolf %A Tabuenca,Bernardo %A Specht,Marcus %A Skorning,Max %+ Welten Institute-Research Centre for Learning, Teaching and Technology, Open University of the Netherlands, PO Box 2960, Heerlen, 6401 DL, Netherlands, 31 455762718, marco.kalz@ou.nl %K basic life support (BLS) %K cardiopulmonary resuscitation (CPR) %K external chest compression (ECC) %K smartphone apps %K mobile phone %K mobile health %D 2014 %7 19.03.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: No systematic evaluation of smartphone/mobile apps for resuscitation training and real incident support is available to date. To provide medical, usability, and additional quality criteria for the development of apps, we conducted a mixed-methods sequential evaluation combining the perspective of medical experts and end-users. Objective: The study aims to assess the quality of current mobile apps for cardiopulmonary resuscitation (CPR) training and real incident support from expert as well as end-user perspective. Methods: Two independent medical experts evaluated the medical content of CPR apps from the Google Play store and the Apple App store. The evaluation was based on pre-defined minimum medical content requirements according to current Basic Life Support (BLS) guidelines. In a second phase, non-medical end-users tested usability and appeal of the apps that had at least met the minimum requirements. Usability was assessed with the System Usability Scale (SUS); appeal was measured with the self-developed ReactionDeck toolkit. Results: Out of 61 apps, 46 were included in the experts’ evaluation. A consolidated list of 13 apps resulted for the following layperson evaluation. The interrater reliability was substantial (kappa=.61). Layperson end-users (n=14) had a high interrater reliability (intraclass correlation 1 [ICC1]=.83, P<.001, 95% CI 0.75-0.882 and ICC2=.79, P<.001, 95% CI 0.695-0.869). Their evaluation resulted in a list of 5 recommendable apps. Conclusions: Although several apps for resuscitation training and real incident support are available, very few are designed according to current BLS guidelines and offer an acceptable level of usability and hedonic quality for laypersons. The results of this study are intended to optimize the development of CPR mobile apps. The app ranking supports the informed selection of mobile apps for training situations and CPR campaigns as well as for real incident support. %M 24647361 %R 10.2196/jmir.2951 %U http://www.jmir.org/2014/3/e89/ %U https://doi.org/10.2196/jmir.2951 %U http://www.ncbi.nlm.nih.gov/pubmed/24647361 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 16 %N 3 %P e80 %T Animated Randomness, Avatars, Movement, and Personalization in Risk Graphics %A Witteman,Holly O %A Fuhrel-Forbis,Andrea %A Wijeysundera,Harindra C %A Exe,Nicole %A Dickson,Mark %A Holtzman,Lisa %A Kahn,Valerie C %A Zikmund-Fisher,Brian J %+ Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, 1050 avenue de la Médecine, Pavillon Ferdinand-Vandry 2881-F, Quebec City, QC, G1V 0A6, Canada, 1 418 656 2131 ext 3981, holly@witteman.ca %K risk graphics %K health communication %K cardiovascular disease %K animation %K avatar %K pictograph %K icon array %D 2014 %7 18.03.2014 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 24642037 %R 10.2196/jmir.2895 %U http://www.jmir.org/2014/3/e80/ %U https://doi.org/10.2196/jmir.2895 %U http://www.ncbi.nlm.nih.gov/pubmed/24642037 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 16 %N 3 %P e74 %T Multimodal Guided Self-Help Exercise Program to Prevent Speech, Swallowing, and Shoulder Problems Among Head and Neck Cancer Patients: A Feasibility Study %A Cnossen,Ingrid C %A van Uden-Kraan,Cornelia F %A Rinkel,Rico NPM %A Aalders,IJke J %A de Goede,Cees JT %A de Bree,Remco %A Doornaert,Patricia %A Rietveld,Derek HF %A Langendijk,Johannes A %A Witte,Birgit I %A Leemans,C Rene %A Verdonck-de Leeuw,Irma M %+ VU University Medical Center, Department of Otolaryngology - Head and Neck Surgery, VU University Medical Center, PO Box 7057, De Boelelaan 1118, Amsterdam, 1081 HV Amsterdam, Netherlands, 31 20 4440931, IM.verdonck@vumc.nl %K eHealth %K self-care %K head and neck cancer %K exercise %K speech %K swallowing %K shoulder %K surgery %K radiotherapy %K chemotherapy %D 2014 %7 06.03.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: During a 6-week course of (chemo)radiation many head and neck cancer patients have to endure radiotherapy-induced toxicity, negatively affecting patients’ quality of life. Pretreatment counseling combined with self-help exercises could be provided to inform patients and possibly prevent them from having speech, swallowing, and shoulder problems during and after treatment. Objective: Our goal was to investigate the feasibility of a multimodal guided self-help exercise program entitled Head Matters during (chemo)radiation in head and neck cancer patients. Methods: Head and neck cancer patients treated with primary (chemo)radiation or after surgery were asked to perform Head Matters at home. This prophylactic exercise program, offered in three different formats, aims to reduce the risk of developing speech, swallowing, shoulder problems, and a stiff neck. Weekly coaching was provided by a speech and swallowing therapist. Patients filled out a diary to keep track of their exercise activity. To gain insight into possible barriers and facilitators to exercise adherence, reports of weekly coaching sessions were analyzed by 2 coders independently. Results: Of 41 eligible patients, 34 patients were willing to participate (83% uptake). Of participating patients, 21 patients completed the program (64% adherence rate). The majority of participants (58%) had a moderate to high level of exercise performance. Exercise performance level was not significantly associated with age (P=.50), gender (P=.42), tumor subsite (P=1.00) or tumor stage (P=.20), treatment modality (P=.72), or Head Matters format (Web-based or paper) (P=1.00). Based on patients’ diaries and weekly coaching sessions, patients’ perceived barriers to exercise were a decreased physical condition, treatment-related barriers, emotional problems, lack of motivation, social barriers, and technical problems. Patients’ perceived facilitators included an increased physical condition, feeling motivated, and social and technical facilitators. Conclusions: Head Matters, a multimodal guided self-help exercise program is feasible for head and neck cancer patients undergoing (chemo)radiation. Several barriers (decreased physical condition, treatment-related barriers) and facilitators (increased physical condition, feeling motivated) were identified providing directions for future studies. The next step is conducting a study investigating the (cost-)effectiveness of Head Matters on speech, swallowing, shoulder function, and quality of life. %M 24610383 %R 10.2196/jmir.2990 %U http://www.jmir.org/2014/3/e74/ %U https://doi.org/10.2196/jmir.2990 %U http://www.ncbi.nlm.nih.gov/pubmed/24610383 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 16 %N 2 %P e63 %T Supporting Patients Treated for Prostate Cancer: A Video Vignette Study With an Email-Based Educational Program in General Practice %A Jiwa,Moyez %A Halkett,Georgia %A Meng,Xingqiong %A Pillai,Vinita %A Berg,Melissa %A Shaw,Tim %+ Curtin University, GPO Box U1987, Perth, , Australia, 61 8 9266 1768, m.jiwa@curtin.edu.au %K medical education %K prostate cancer %K general practice %K email %K video %D 2014 %7 26.02.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: Men who have been treated for prostate cancer in Australia can consult their general practitioner (GP) for advice about symptoms or side effects at any time following treatment. However, there is no evidence that such men are consistently advised by GPs and patients experience substantial unmet need for reassurance and advice. Objective: The intent of the study was to evaluate a brief, email-based educational program for GPs to manage standardized patients presenting with symptoms or side effects months or years after prostate cancer treatment. Methods: GPs viewed six pairs of video vignettes of actor-patients depicting men who had been treated for prostate cancer. The actor-patients presented problems that were attributable to the treatment of cancer. In Phase 1, GPs indicated their diagnosis and stated if they would prescribe, refer, or order tests based on that diagnosis. These responses were compared to the management decisions for those vignettes as recommended by a team of experts in prostate cancer. After Phase 1, all the GPs were invited to participate in an email-based education program (Spaced Education) focused on prostate cancer. Participants received feedback and could compare their progress and their performance with other participants in the study. In Phase 2, all GPs, regardless of whether they had completed the program, were invited to view another set of six video vignettes with men presenting similar problems to Phase 1. They again offered a diagnosis and stated if they would prescribe, refer, or order tests based on that diagnosis. Results: In total, 64 general practitioners participated in the project, 57 GPs participated in Phase 1, and 45 in Phase 2. The Phase 1 education program was completed by 38 of the 57 (59%) participants. There were no significant differences in demographics between those who completed the program and those who did not. Factors determining whether management of cases was consistent with expert opinion were number of sessions worked per week (OR 0.78, 95% CI 0.67-0.90), site of clinical practice (remote practice, OR 2.25, 95% CI 1.01-5.03), number of patients seen per week (150 patients or more per week, OR 10.66, 95% CI 3.40-33.48), and type of case viewed. Completion of the Spaced Education did impact whether patient management was consistent with expert opinion (not completed, OR 0.88, 95% CI 0.5-1.56). Conclusions: The management of standardized patients by GPs was particularly unlikely to be consistent with expert opinion in the management of impotence and bony metastasis. There was no evidence from this standardized patient study that Spaced Education had an impact on the management of patients in this context. However, the program was not completed by all participants. Practitioners with a greater clinical load were more likely to manage cases as per expert opinion. %M 24571952 %R 10.2196/jmir.3003 %U http://www.jmir.org/2014/2/e63/ %U https://doi.org/10.2196/jmir.3003 %U http://www.ncbi.nlm.nih.gov/pubmed/24571952 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 16 %N 2 %P e64 %T Hospital Website Rankings in the United States: Expanding Benchmarks and Standards for Effective Consumer Engagement %A Huerta,Timothy R %A Hefner,Jennifer L %A Ford,Eric W %A McAlearney,Ann Scheck %A Menachemi,Nir %+ Departments of Family Medicine and Biomedical Informatics, College of Medicine, The Ohio State University, 261 Northwood-High Building, 2231 North High Street, Columbus, OH, 43201, United States, 1 614 366 6636, Timothy.Huerta@osumc.edu %K social media %K hospitals %K information services %K communication %K access %K consumer health information %D 2014 %7 25.02.2014 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 24568892 %R 10.2196/jmir.3054 %U http://www.jmir.org/2014/2/e64/ %U https://doi.org/10.2196/jmir.3054 %U http://www.ncbi.nlm.nih.gov/pubmed/24568892 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 16 %N 2 %P e56 %T Social Media and Rating Sites as Tools to Understanding Quality of Care: A Scoping Review %A Verhoef,Lise M %A Van de Belt,Tom H %A Engelen,Lucien JLPG %A Schoonhoven,Lisette %A Kool,Rudolf B %+ IQ healthcare, Radboud University Medical Center, Route 114, Geert Grooteplein-Noord 21, Nijmegen, 6525 EZ, Netherlands, 31 243667308, Lise.Verhoef@radboudumc.nl %K social media %K rating sites %K patient experiences %K patient satisfaction %K quality of health care %D 2014 %7 20.02.2014 %9 Review %J J Med Internet Res %G English %X Background: Insight into the quality of health care is important for any stakeholder including patients, professionals, and governments. In light of a patient-centered approach, it is essential to assess the quality of health care from a patient’s perspective, which is commonly done with surveys or focus groups. Unfortunately, these “traditional” methods have significant limitations that include social desirability bias, a time lag between experience and measurement, and difficulty reaching large groups of people. Information on social media could be of value to overcoming these limitations, since these new media are easy to use and are used by the majority of the population. Furthermore, an increasing number of people share health care experiences online or rate the quality of their health care provider on physician rating sites. The question is whether this information is relevant to determining or predicting the quality of health care. Objective: The goal of our research was to systematically analyze the relation between information shared on social media and quality of care. Methods: We performed a scoping review with the following goals: (1) to map the literature on the association between social media and quality of care, (2) to identify different mechanisms of this relationship, and (3) to determine a more detailed agenda for this relatively new research area. A recognized scoping review methodology was used. We developed a search strategy based on four themes: social media, patient experience, quality, and health care. Four online scientific databases were searched, articles were screened, and data extracted. Results related to the research question were described and categorized according to type of social media. Furthermore, national and international stakeholders were consulted throughout the study, to discuss and interpret results. Results: Twenty-nine articles were included, of which 21 were concerned with health care rating sites. Several studies indicate a relationship between information on social media and quality of health care. However, some drawbacks exist, especially regarding the use of rating sites. For example, since rating is anonymous, rating values are not risk adjusted and therefore vulnerable to fraud. Also, ratings are often based on only a few reviews and are predominantly positive. Furthermore, people providing feedback on health care via social media are presumably not always representative for the patient population. Conclusions: Social media and particularly rating sites are an interesting new source of information about quality of care from the patient’s perspective. This new source should be used to complement traditional methods, since measuring quality of care via social media has other, but not less serious, limitations. Future research should explore whether social media are suitable in practice for patients, health insurers, and governments to help them judge the quality performance of professionals and organizations. %M 24566844 %R 10.2196/jmir.3024 %U http://www.jmir.org/2014/2/e56/ %U https://doi.org/10.2196/jmir.3024 %U http://www.ncbi.nlm.nih.gov/pubmed/24566844 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 16 %N 2 %P e45 %T Evaluation of a Novel Conjunctive Exploratory Navigation Interface for Consumer Health Information: A Crowdsourced Comparative Study %A Cui,Licong %A Carter,Rebecca %A Zhang,Guo-Qiang %+ Department of Electrical Engineering and Computer Science, Division of Medical Informatics, Case Western Reserve University, 2103 Cornell Road, Cleveland, OH, 44106, United States, 1 216 368 3286, gq@case.edu %K crowdsourcing %K consumer health information %K human computer interaction %K information retrieval %K search interfaces %K comparative user evaluation %D 2014 %7 10.02.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: Numerous consumer health information websites have been developed to provide consumers access to health information. However, lookup search is insufficient for consumers to take full advantage of these rich public information resources. Exploratory search is considered a promising complementary mechanism, but its efficacy has never before been rigorously evaluated for consumer health information retrieval interfaces. Objective: This study aims to (1) introduce a novel Conjunctive Exploratory Navigation Interface (CENI) for supporting effective consumer health information retrieval and navigation, and (2) evaluate the effectiveness of CENI through a search-interface comparative evaluation using crowdsourcing with Amazon Mechanical Turk (AMT). Methods: We collected over 60,000 consumer health questions from NetWellness, one of the first consumer health websites to provide high-quality health information. We designed and developed a novel conjunctive exploratory navigation interface to explore NetWellness health questions with health topics as dynamic and searchable menus. To investigate the effectiveness of CENI, we developed a second interface with keyword-based search only. A crowdsourcing comparative study was carefully designed to compare three search modes of interest: (A) the topic-navigation-based CENI, (B) the keyword-based lookup interface, and (C) either the most commonly available lookup search interface with Google, or the resident advanced search offered by NetWellness. To compare the effectiveness of the three search modes, 9 search tasks were designed with relevant health questions from NetWellness. Each task included a rating of difficulty level and questions for validating the quality of answers. Ninety anonymous and unique AMT workers were recruited as participants. Results: Repeated-measures ANOVA analysis of the data showed the search modes A, B, and C had statistically significant differences among their levels of difficulty (P<.001). Wilcoxon signed-rank test (one-tailed) between A and B showed that A was significantly easier than B (P<.001). Paired t tests (one-tailed) between A and C showed A was significantly easier than C (P<.001). Participant responses on the preferred search modes showed that 47.8% (43/90) participants preferred A, 25.6% (23/90) preferred B, 24.4% (22/90) preferred C. Participant comments on the preferred search modes indicated that CENI was easy to use, provided better organization of health questions by topics, allowed users to narrow down to the most relevant contents quickly, and supported the exploratory navigation by non-experts or those unsure how to initiate their search. Conclusions: We presented a novel conjunctive exploratory navigation interface for consumer health information retrieval and navigation. Crowdsourcing permitted a carefully designed comparative search-interface evaluation to be completed in a timely and cost-effective manner with a relatively large number of participants recruited anonymously. Accounting for possible biases, our study has shown for the first time with crowdsourcing that the combination of exploratory navigation and lookup search is more effective than lookup search alone. %M 24513593 %R 10.2196/jmir.3111 %U http://www.jmir.org/2014/2/e45/ %U https://doi.org/10.2196/jmir.3111 %U http://www.ncbi.nlm.nih.gov/pubmed/24513593 %0 Journal Article %@ 1438-8871 %I JMIR Publications Inc. %V 16 %N 1 %P e2 %T The Psychometric Properties of CollaboRATE: A Fast and Frugal Patient-Reported Measure of the Shared Decision-Making Process %A Barr,Paul James %A Thompson,Rachel %A Walsh,Thom %A Grande,Stuart W %A Ozanne,Elissa M %A Elwyn,Glyn %+ The Dartmouth Center for Health Care Delivery Science, Dartmouth College, 37 Dewey Field Road, Hanover, NH, 03755, United States, 1 1 603 646 2295, glynelwyn@gmail.com %K decision making %K physician-patient relations %K psychometrics/Instrumentation %K patient participation %K questionnaires %K Internet %D 2014 %7 03.01.2014 %9 Original Paper %J J Med Internet Res %G English %X Background: Patient-centered health care is a central component of current health policy agendas. Shared decision making (SDM) is considered to be the pinnacle of patient engagement and methods to promote this are becoming commonplace. However, the measurement of SDM continues to prove challenging. Reviews have highlighted the need for a patient-reported measure of SDM that is practical, valid, and reliable to assist implementation efforts. In consultation with patients, we developed CollaboRATE, a 3-item measure of the SDM process. Objective: There is a need for scalable patient-reported measure of the SDM process. In the current project, we assessed the psychometric properties of CollaboRATE. Methods: A representative sample of the US population were recruited online and were randomly allocated to view 1 of 6 simulated doctor-patient encounters in January 2013. Three dimensions of SDM were manipulated in the encounters: (1) explanation of the health issue, (2) elicitation of patient preferences, and (3) integration of patient preferences. Participants then completed CollaboRATE (possible scores 0-100) in addition to 2 other patient-reported measures of SDM: the 9-item Shared Decision Decision Making Questionnaire (SDM-Q-9) and the Doctor Facilitation subscale of the Patient’s Perceived Involvement in Care Scale (PICS). A subsample of participants was resurveyed between 7 and 14 days after the initial survey. We assessed CollaboRATE’s discriminative, concurrent, and divergent validity, intrarater reliability, and sensitivity to change. Results: The final sample consisted of 1341 participants. CollaboRATE demonstrated discriminative validity, with a significant increase in CollaboRATE score as the number of core dimensions of SDM increased from zero (mean score: 46.0, 95% CI 42.4-49.6) to 3 (mean score 85.8, 95% CI 83.2-88.4). CollaboRATE also demonstrated concurrent validity with other measures of SDM, excellent intrarater reliability, and sensitivity to change; however, divergent validity was not demonstrated. Conclusions: The fast and frugal nature of CollaboRATE lends itself to routine clinical use. Further assessment of CollaboRATE in real-world settings is required. %M 24389354 %R 10.2196/jmir.3085 %U http://www.jmir.org/2014/1/e2/ %U https://doi.org/10.2196/jmir.3085 %U http://www.ncbi.nlm.nih.gov/pubmed/24389354 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 12 %P e286 %T 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 %A Jimbo,Masahito %A Shultz,Cameron Garth %A Nease,Donald Eugene %A Fetters,Michael Derwin %A Power,Debra %A Ruffin IV,Mack Thomas %+ University of Michigan, Departments of Family Medicine and Urology, 1018 Fuller St, Ann Arbor, MI, 48104-1213, United States, 1 734 998 7120, mjimbo@umich.edu %K colon cancer %K colonoscopy %K cancer screening %K early detection of cancer %K reminder systems %K decision support techniques %K focus groups %K health information technology %D 2013 %7 18.12.2013 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 24351420 %R 10.2196/jmir.2914 %U http://www.jmir.org/2013/12/e286/ %U https://doi.org/10.2196/jmir.2914 %U http://www.ncbi.nlm.nih.gov/pubmed/24351420 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 12 %P e273 %T The Effect of Patient Narratives on Information Search in a Web-Based Breast Cancer Decision Aid: An Eye-Tracking Study %A Shaffer,Victoria A %A Owens,Justin %A Zikmund-Fisher,Brian J %+ University of Missouri, Department of Health Sciences, School of Health Professions, Department of Psychological Sciences, College of Arts & Science, 501 Clark Hall, Columbia, MO, 65211, United States, 1 573 882 9094, shafferv@health.missouri.edu %K personal narratives %K decision aids %K eye tracking %K breast cancer %D 2013 %7 17.12.2013 %9 Original Paper %J J Med Internet Res %G English %X Background: Previous research has examined the impact of patient narratives on treatment choices, but to our knowledge, no study has examined the effect of narratives on information search. Further, no research has considered the relative impact of their format (text vs video) on health care decisions in a single study. Objective: Our goal was to examine the impact of video and text-based narratives on information search in a Web-based patient decision aid for early stage breast cancer. Methods: Fifty-six women were asked to imagine that they had been diagnosed with early stage breast cancer and needed to choose between two surgical treatments (lumpectomy with radiation or mastectomy). Participants were randomly assigned to view one of four versions of a Web decision aid. Two versions of the decision aid included videos of interviews with patients and physicians or videos of interviews with physicians only. To distinguish between the effect of narratives and the effect of videos, we created two text versions of the Web decision aid by replacing the patient and physician interviews with text transcripts of the videos. Participants could freely browse the Web decision aid until they developed a treatment preference. We recorded participants’ eye movements using the Tobii 1750 eye-tracking system equipped with Tobii Studio software. A priori, we defined 24 areas of interest (AOIs) in the Web decision aid. These AOIs were either separate pages of the Web decision aid or sections within a single page covering different content. Results: We used multilevel modeling to examine the effect of narrative presence, narrative format, and their interaction on information search. There was a significant main effect of condition, P=.02; participants viewing decision aids with patient narratives spent more time searching for information than participants viewing the decision aids without narratives. The main effect of format was not significant, P=.10. However, there was a significant condition by format interaction on fixation duration, P<.001. When comparing the two video decision aids, participants viewing the narrative version spent more time searching for information than participants viewing the control version of the decision aid. In contrast, participants viewing the narrative version of the text decision aid spent less time searching for information than participants viewing the control version of the text decision aid. Further, narratives appear to have a global effect on information search; these effects were not limited to specific sections of the decision aid that contained topics discussed in the patient stories. Conclusions: The observed increase in fixation duration with video patient testimonials is consistent with the idea that the vividness of the video content could cause greater elaboration of the message, thereby encouraging greater information search. Conversely, because reading requires more effortful processing than watching, reading patient narratives may have decreased participant motivation to engage in more reading in the remaining sections of the Web decision aid. These findings suggest that the format of patient stories may be equally as important as their content in determining their effect on decision making. More research is needed to understand why differences in format result in fundamental differences in information search. %M 24345424 %R 10.2196/jmir.2784 %U http://www.jmir.org/2013/12/e273/ %U https://doi.org/10.2196/jmir.2784 %U http://www.ncbi.nlm.nih.gov/pubmed/24345424 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 11 %P e234 %T The Effects of Preference for Information on Consumers’ Online Health Information Search Behavior %A Zhang,Yan %+ University of Texas at Austin, 1616 Guadalupe Street, Austin, TX, 78701, United States, 1 512 471 9448, yanz@ischool.utexas.edu %K preference for information %K health information %K consumer search behavior %K search engines %D 2013 %7 26.11.2013 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 24284061 %R 10.2196/jmir.2783 %U http://www.jmir.org/2013/11/e234/ %U https://doi.org/10.2196/jmir.2783 %U http://www.ncbi.nlm.nih.gov/pubmed/24284061 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 11 %P e254 %T Factors Associated With Intention to Use Internet-Based Testing for Sexually Transmitted Infections Among Men Who Have Sex With Men %A Gilbert,Mark %A Hottes,Travis Salway %A Kerr,Thomas %A Taylor,Darlene %A Fairley,Christopher K %A Lester,Richard %A Wong,Tom %A Trussler,Terry %A Marchand,Rick %A Shoveller,Jean %A Ogilvie,Gina %+ Clinical Prevention Services, BC Centre for Disease Control, 655 West 12th Avenue, Vancouver, BC, V5Z4R4, Canada, 1 6047075615, mark.gilbert@bccdc.ca %K homosexuality %K male %K Internet %K testing %K human immunodeficiency virus %K sexually transmitted infection %K health equity %K patient acceptance of health care %D 2013 %7 14.11.2013 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 24240644 %R 10.2196/jmir.2888 %U http://www.jmir.org/2013/11/e254/ %U https://doi.org/10.2196/jmir.2888 %U http://www.ncbi.nlm.nih.gov/pubmed/24240644 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 7 %P e144 %T User Evaluation of the Effects of a Text Simplification Algorithm Using Term Familiarity on Perception, Understanding, Learning, and Information Retention %A Leroy,Gondy %A Endicott,James E %A Kauchak,David %A Mouradi,Obay %A Just,Melissa %+ Information Systems and Technology, Claremont Graduate University, ACB 225, 130 E Ninth Street, Claremont, CA, 91711, United States, 1 909 607 3270, gondy.leroy@cgu.edu %K text simplification %K health literacy %K consumer health information %K natural language processing %K evaluation study %D 2013 %7 31.07.2013 %9 Original Paper %J J Med Internet Res %G English %X Background: Adequate health literacy is important for people to maintain good health and manage diseases and injuries. Educational text, either retrieved from the Internet or provided by a doctor’s office, is a popular method to communicate health-related information. Unfortunately, it is difficult to write text that is easy to understand, and existing approaches, mostly the application of readability formulas, have not convincingly been shown to reduce the difficulty of text. Objective: To develop an evidence-based writer support tool to improve perceived and actual text difficulty. To this end, we are developing and testing algorithms that automatically identify difficult sections in text and provide appropriate, easier alternatives; algorithms that effectively reduce text difficulty will be included in the support tool. This work describes the user evaluation with an independent writer of an automated simplification algorithm using term familiarity. Methods: Term familiarity indicates how easy words are for readers and is estimated using term frequencies in the Google Web Corpus. Unfamiliar words are algorithmically identified and tagged for potential replacement. Easier alternatives consisting of synonyms, hypernyms, definitions, and semantic types are extracted from WordNet, the Unified Medical Language System (UMLS), and Wiktionary and ranked for a writer to choose from to simplify the text. We conducted a controlled user study with a representative writer who used our simplification algorithm to simplify texts. We tested the impact with representative consumers. The key independent variable of our study is lexical simplification, and we measured its effect on both perceived and actual text difficulty. Participants were recruited from Amazon’s Mechanical Turk website. Perceived difficulty was measured with 1 metric, a 5-point Likert scale. Actual difficulty was measured with 3 metrics: 5 multiple-choice questions alongside each text to measure understanding, 7 multiple-choice questions without the text for learning, and 2 free recall questions for information retention. Results: Ninety-nine participants completed the study. We found strong beneficial effects on both perceived and actual difficulty. After simplification, the text was perceived as simpler (P<.001) with simplified text scoring 2.3 and original text 3.2 on the 5-point Likert scale (score 1: easiest). It also led to better understanding of the text (P<.001) with 11% more correct answers with simplified text (63% correct) compared to the original (52% correct). There was more learning with 18% more correct answers after reading simplified text compared to 9% more correct answers after reading the original text (P=.003). There was no significant effect on free recall. Conclusions: Term familiarity is a valuable feature in simplifying text. Although the topic of the text influences the effect size, the results were convincing and consistent. %M 23903235 %R 10.2196/jmir.2569 %U http://www.jmir.org/2013/7/e144/ %U https://doi.org/10.2196/jmir.2569 %U http://www.ncbi.nlm.nih.gov/pubmed/23903235 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 7 %P e107 %T Major Infection Events Over 5 Years: How Is Media Coverage Influencing Online Information Needs of Health Care Professionals and the Public? %A Kostkova,Patty %A Fowler,David %A Wiseman,Sue %A Weinberg,Julius R %+ Department of Computer Science, National Resource for Infection Control (NRIC), University College London, Gower Street, London, WC1E 6BT, United Kingdom, 44 20 7679 0340, P.Kostkova@ucl.ac.uk %K information seeking behavior %K weblogs analysis %K online information needs %K data mining %K infectious outbreaks %D 2013 %7 15.07.2013 %9 Original Paper %J J Med Internet Res %G English %X Background: The last decade witnessed turbulent events in public health. Emerging infections, increase of antimicrobial resistance, deliberately released threats and ongoing battles with common illnesses were amplified by the spread of disease through increased international travel. The Internet has dramatically changed the availability of information about outbreaks; however, little research has been done in comparing the online behavior of public and professionals around the same events and the effect of media coverage of outbreaks on information needs. Objective: To investigate professional and public online information needs around major infection outbreaks and correlate these with media coverage. Questions include (1) How do health care professionals’ online needs for public health and infection control information differ from those of the public?, (2) Does dramatic media coverage of outbreaks contribute to the information needs among the public?, and (3) How do incidents of diseases and major policy events relate to the information needs of professionals? Methods: We used three longitudinal time-based datasets from mid-2006 until end of 2010: (1) a unique record of professional online behavior on UK infection portals: National electronic Library of Infection and National Resource of Infection Control (NeLI/NRIC), (2) equivalent public online information needs (Google Trends), and (3) relevant media coverage (LexisNexis). Analysis of NeLI/NRIC logs identified the highest interest around six major infectious diseases: Clostridium difficile (C difficile)/Methicillin-resistant Staphylococcus aureus (MRSA), tuberculosis, meningitis, norovirus, and influenza. After pre-processing, the datasets were analyzed and triangulated with each other. Results: Public information needs were more static, following the actual disease occurrence less than those of professionals, whose needs increase with public health events (eg, MRSA/C difficile) and the release of major national policies or important documents. Media coverage of events resulted in major public interest (eg, the 2007/2008 UK outbreak of C difficile/MRSA). An exception was norovirus, showing a seasonal pattern for both public and professionals, which matched the periodic disease occurrence. Meningitis was a clear example of a disease with heightened media coverage tending to focus on individual and celebrity cases. Influenza was a major concern during the 2009 H1N1 outbreak creating massive public interest in line with the spring and autumn peaks in cases; although in autumn 2009, there was no corresponding increase in media coverage. Online resources play an increasing role in fulfilling professionals’ and public information needs. Conclusions: Significant factors related to a surge of professional interest around a disease were typically key publications and major policy changes. Public interests seem more static and correlate with media influence but to a lesser extent than expected. The only exception was norovirus, exhibiting online public and professional interest correlating with seasonal occurrences of the disease. Public health agencies with responsibility for risk communication of public health events, in particular during outbreaks and emergencies, need to collaborate with media in order to ensure the coverage is high quality and evidence-based, while professionals’ information needs remain mainly fulfilled by online open access to key resources. %M 23856364 %R 10.2196/jmir.2146 %U http://www.jmir.org/2013/7/e107/ %U https://doi.org/10.2196/jmir.2146 %U http://www.ncbi.nlm.nih.gov/pubmed/23856364 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 7 %P e123 %T Facilitating Out-of-Home Caregiving Through Health Information Technology: Survey of Informal Caregivers’ Current Practices, Interests, and Perceived Barriers %A Zulman,Donna M %A Piette,John D %A Jenchura,Emily C %A Asch,Steven M %A Rosland,Ann-Marie %+ Center for Health Care Evaluation, VA Palo Alto Health Care System, MC-152, 795 Willow Road, Menlo Park, CA, 94025, United States, 1 650 493 5000 ext 29113, donna.zulman@va.gov %K caregivers %K chronic disease %K medical informatics %D 2013 %7 10.07.2013 %9 Original Paper %J J Med Internet Res %G English %X 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. %M 23841987 %R 10.2196/jmir.2472 %U http://www.jmir.org/2013/7/e123/ %U https://doi.org/10.2196/jmir.2472 %U http://www.ncbi.nlm.nih.gov/pubmed/23841987 %0 Journal Article %@ 14388871 %I JMIR Publications Inc. %V 15 %N 7 %P e132 %T Internet Use Frequency and Patient-Centered Care: Measuring Patient Preferences for Participation Using the Health Information Wants Questionnaire %A Xie,Bo %A Wang,Mo %A Feldman,Robert %A Zhou,Le %+ School of Nursing & School of Information, University of Texas at Austin, 1710 Red River Street, Austin, TX, 78712, United States, 1 512 232 5788, boxie@utexas.edu %K patient-centered care %K patient preference %K shared decision-making %K patient participation %K Internet %D 2013 %7 01.07.2013 %9 Original Paper %J J Med Internet Res %G English %X 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 (γ=.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 (γ=.57, P<.01); more information and more decision-making autonomy for laboratory test (γ=.15, P<.05), complementary and alternative medicine (γ=.32, P<.01), and self-care (γ=.15, P<.05); and less information but more decision-making autonomy for the psychosocial (γ=-.51, P<.01) and health care provider (γ=-.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. %M 23816979 %R 10.2196/jmir.2615 %U http://www.jmir.org/2013/7/e132/ %U https://doi.org/10.2196/jmir.2615 %U http://www.ncbi.nlm.nih.gov/pubmed/23816979 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 15 %N 2 %P e33 %T How "Community" Matters for How People Interact With Information: Mixed Methods Study of Young Men Who Have Sex With Other Men %A Veinot,Tiffany Christine %A Meadowbrooke,Chrysta Cathleen %A Loveluck,Jimena %A Hickok,Andrew %A Bauermeister,Jose Artruro %+ School of Information, University of Michigan, 4429 North Quad, 105 S. State Street, Ann Arbor, MI, 48109-1285, United States, 1 734 615 8281, tveinot@umich.edu %K Community %K health informatics %K information use %K information seeking %K incidental information acquisition %K relevance %K social networks %K HIV/AIDS %K information sharing %K mixed methods %K consumer health informatics %D 2013 %7 21.02.2013 %9 Original Paper %J J Med Internet Res %G English %X Background: We lack a systematic portrait of the relationship between community involvement and how people interact with information. Young men who have sex with men (YMSM) are a population for which these relationships are especially salient: their gay community involvement varies and their information technology use is high. YMSM under age 24 are also one of the US populations with the highest risk of HIV/AIDS. Objective: To develop, test, and refine a model of gay community involvement (GCI) factors in human-information interaction (HII) as applied to HIV/AIDS information among YMSM, specifically examining the role of Internet use in GCI and HII. Methods: Mixed methods included: 1) online questionnaire with 194 YMSM; and 2) qualitative interviews with 19 YMSM with high GCI levels. Recruitment utilized social media, dating websites, health clinics, bars/clubs, and public postings. The survey included questions regarding HIV/AIDS–related information acquisition and use patterns, gay community involvement, risk behaviors, and technology use. For survey data, we tested multiple linear regression models using a series of community- and information-related variables as dependent variables. Independent variables included community- and information-related variables and demographic covariates. We then conducted a recursive path analysis in order to estimate a final model, which we refined through a grounded theory analysis of qualitative interview data. Results: Four community-related variables significantly predicted how people interact with information (HII variables): 1) gay community involvement (GCI), 2) social costs of information seeking, 3) network expertise accessibility, and 4) community relevance. GCI was associated with significantly lower perceived social costs of HIV/AIDS information seeking (R2=0.07). GCI and social costs significantly predicted network expertise accessibility (R2=0.14). GCI predicted 14% of the variance in community relevance and 9% of the variance in information seeking frequency. Incidental HIV/AIDS information acquisition (IIA) was also significantly predicted by GCI (R2=0.16). 28% of the variance in HIV/AIDS information use was explained by community relevance, network expertise access, and both IIA and information seeking. The final path model showed good fit: the RSMEA was 0.054 (90% CI: .000-.101); the Chi-square was non-significant (χ2(11)=17.105; P=.105); and the CFI was 0.967. Qualitative findings suggest that the model may be enhanced by including information sharing: organizing events, disseminating messages, encouraging safety, and referring and recommending. Information sharing emerged under conditions of pro-social community value enactment and may have consequences for further HII. YMSM with greater GCI generally used the Internet more, although they chatted online less. Conclusions: HIV/AIDS–related HII and associated technology uses are community-embedded processes. The model provides theoretical mediators that may serve as a focus for intervention: 1) valuing HIV/AIDS information, through believing it is relevant to one’s group, and 2) supportive and knowledgeable network members with whom to talk about HIV/AIDS. Pro-social community value endorsement and information sharing may also be important theoretical mediators. Our model could open possibilities for considering how informatics interventions can also be designed as community-level interventions and vice versa. %M 23428825 %R 10.2196/jmir.2370 %U http://www.jmir.org/2013/2/e33/ %U https://doi.org/10.2196/jmir.2370 %U http://www.ncbi.nlm.nih.gov/pubmed/23428825 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 14 %N 4 %P e106 %T Animated Graphics for Comparing Two Risks: A Cautionary Tale %A Zikmund-Fisher,Brian J %A Witteman,Holly O %A Fuhrel-Forbis,Andrea %A Exe,Nicole L %A Kahn,Valerie C %A Dickson,Mark %+ Department of Health Behavior and Health Education, School of Public Health, University of Michigan, 1415 Washington Heights, Ann Arbor, MI, 48109-2029, United States, 1 734 936 9179, bzikmund@umich.edu %K Risk %K patient education as topic %K patient-provider communication %K decision aids %K visual aids %D 2012 %7 25.07.2012 %9 Original Paper %J J Med Internet Res %G English %X Background: The increasing use of computer-administered risk communications affords the potential to replace static risk graphics with animations that use motion cues to reinforce key risk messages. Research on the use of animated graphics, however, has yielded mixed findings, and little research exists to identify the specific animations that might improve risk knowledge and patients’ decision making. Objective: To test whether viewing animated forms of standard pictograph (icon array) risk graphics displaying risks of side effects would improve people’s ability to select the treatment with the lowest risk profile, as compared with viewing static images of the same risks. Methods: A total of 4198 members of a demographically diverse Internet panel read a scenario about two hypothetical treatments for thyroid cancer. Each treatment was described as equally effective but varied in side effects (with one option slightly better than the other). Participants were randomly assigned to receive all risk information in 1 of 10 pictograph formats in a quasi-factorial design. We compared a control condition of static grouped icons with a static scattered icon display and with 8 Flash-based animated versions that incorporated different combinations of (1) building the risk 1 icon at a time, (2) having scattered risk icons settle into a group, or (3) having scattered risk icons shuffle themselves (either automatically or by user control). We assessed participants’ ability to choose the better treatment (choice accuracy), their gist knowledge of side effects (knowledge accuracy), and their graph evaluation ratings, controlling for subjective numeracy and need for cognition. Results: When compared against static grouped-icon arrays, no animations significantly improved any outcomes, and most showed significant performance degradations. However, participants who received animations of grouped icons in which at-risk icons appeared 1 at a time performed as well on all outcomes as the static grouped-icon control group. Displays with scattered icons (static or animated) performed particularly poorly unless they included the settle animation that allowed users to view event icons grouped. Conclusions: Many combinations of animation, especially those with scattered icons that shuffle randomly, appear to inhibit knowledge accuracy in this context. Static pictographs that group risk icons, however, perform very well on measures of knowledge and choice accuracy. These findings parallel recent evidence in other data communication contexts that less can be more—that is, that simpler, more focused information presentation can result in improved understanding. Decision aid designers and health educators should proceed with caution when considering the use of animated risk graphics to compare two risks, given that evidence-based, static risk graphics appear optimal. %M 22832208 %R 10.2196/jmir.2030 %U http://www.jmir.org/2012/4/e106/ %U https://doi.org/10.2196/jmir.2030 %U http://www.ncbi.nlm.nih.gov/pubmed/22832208 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 14 %N 1 %P e9 %T Comparing the Use of an Online Expert Health Network against Common Information Sources to Answer Health Questions %A Rhebergen,Martijn DF %A Lenderink,Annet F %A van Dijk,Frank JH %A Hulshof,Carel TJ %+ Academic Medical Center Amsterdam, Coronel Institute of Occupational Health, University of Amsterdam, Meibergdreef 9, P.O. Box: 22700, Amsterdam, 1100 DE, Netherlands, 31 20566 ext 2831, m.d.rhebergen@amc.uva.nl %K Information services %K online expert network %K medical informatics %K information-seeking behavior %K occupational health %K evidence-based practice %K question and answer %D 2012 %7 02.02.2012 %9 Original Paper %J J Med Internet Res %G English %X Background: Many workers have questions about occupational safety and health (OSH). It is unknown whether workers are able to find correct, evidence-based answers to OSH questions when they use common information sources, such as websites, or whether they would benefit from using an easily accessible, free-of-charge online network of OSH experts providing advice. Objective: To assess the rate of correct, evidence-based answers to OSH questions in a group of workers who used an online network of OSH experts (intervention group) compared with a group of workers who used common information sources (control group). Methods: In a quasi-experimental study, workers in the intervention and control groups were randomly offered 2 questions from a pool of 16 standardized OSH questions. Both questions were sent by mail to all participants, who had 3 weeks to answer them. The intervention group was instructed to use only the online network ArboAntwoord, a network of about 80 OSH experts, to solve the questions. The control group was instructed that they could use all information sources available to them. To assess answer correctness as the main study outcome, 16 standardized correct model answers were constructed with the help of reviewers who performed literature searches. Subsequently, the answers provided by all participants in the intervention (n = 94 answers) and control groups (n = 124 answers) were blinded and compared with the correct model answers on the degree of correctness. Results: Of the 94 answers given by participants in the intervention group, 58 were correct (62%), compared with 24 of the 124 answers (19%) in the control group, who mainly used informational websites found via Google. The difference between the 2 groups was significant (rate difference = 43%, 95% confidence interval [CI] 30%–54%). Additional analysis showed that the rate of correct main conclusions of the answers was 85 of 94 answers (90%) in the intervention group and 75 of 124 answers (61%) in the control group (rate difference = 29%, 95% CI 19%–40%). Remarkably, we could not identify differences between workers who provided correct answers and workers who did not on how they experienced the credibility, completeness, and applicability of the information found (P > .05). Conclusions: Workers are often unable to find correct answers to OSH questions when using common information sources, generally informational websites. Because workers frequently misjudge the quality of the information they find, other strategies are required to assist workers in finding correct answers. Expert advice provided through an online expert network can be effective for this purpose. As many people experience difficulties in finding correct answers to their health questions, expert networks may be an attractive new source of information for health fields in general. %M 22356848 %R 10.2196/jmir.1886 %U http://www.jmir.org/2012/1/e9/ %U https://doi.org/10.2196/jmir.1886 %U http://www.ncbi.nlm.nih.gov/pubmed/22356848 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 14 %N 1 %P e15 %T Results of an Online Community Needs Assessment for Psychoeducational Interventions Among Partners of Hereditary Breast Cancer Previvors and Survivors %A Tercyak,Kenneth P %A Mays,Darren %A DeMarco,Tiffani A %A Sharff,McKane E %A Friedman,Susan %+ Georgetown University Medical Center, Suite 4100, 3300 Whitehaven Street, NW, Washington, DC, , United States, 1 202 687 0802, tercyakk@georgetown.edu %K Breast cancer %K hereditary cancer %K social support %K psychoeducation %K psychosocial intervention %D 2012 %7 18.01.2012 %9 Original Paper %J J Med Internet Res %G English %X Background: Spouses and partners (“partners”) of women at-risk for (“previvors”) and surviving with hereditary breast/ovarian cancer are a primary source of support within their families. Yet, little is known about partners’ needs for psychoeducational intervention to enhance their cancer risk knowledge, coping, and support role functioning. Objective: To determine the type and range of need for psychoeducational intervention among partners of hereditary breast cancer previving and surviving women, and to understand the potential role of the Internet and other communication channels in meeting that need. Methods: We conducted a secondary data analysis on partners’ needs that were originally assessed via an online community-based organization devoted to hereditary breast cancer. Partners’ demographic characteristics, need for psychoeducation, and likelihood of using various communication channels were assessed along with other constructs. Analyses examined commonly-occurring clusters of likely intervention use and by communication channel. Results: Partners (n =143) endorsed a moderately high level of need for psychoeducation and did so across multiple content areas (e.g., role functioning, decision making, communication, intimacy). Factor analysis identified three commonly-preferred communication channels: 1) self-help materials, 2) online interactions, and 3) interpersonal interactions. A cluster analysis among these factors identified three groups of partners based on their likelihood of psychoeducational intervention use (low [18%], moderate [55%], and high [27%] users). In a covariate-adjusted MANOVA, moderate and high intervention users reported significantly greater need for psychoeducation compared to low users (F2,132 = 9.15, P < .001). Conclusions: A majority of assessed partners perceived a need for psychoeducational interventions surrounding hereditary breast cancer risk. Internet-based, interactive resources may be an efficient mechanism to reach large numbers of partners with tailored content. Research is warranted to inform the design and deployment of these resources to ensure quality and high impact, and ultimately to examine ways to integrate these resources into clinical care. %M 22257650 %R 10.2196/jmir.1847 %U http://www.jmir.org/2012/1/e15/ %U https://doi.org/10.2196/jmir.1847 %U http://www.ncbi.nlm.nih.gov/pubmed/22257650 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 14 %N 1 %P e6 %T Acceptability and Preliminary Feasibility of an Internet/CD-ROM-Based Education and Decision Program for Early-Stage Prostate Cancer Patients: Randomized Pilot Study %A Diefenbach,Michael A %A Mohamed,Nihal E %A Butz,Brian P %A Bar-Chama,Natan %A Stock,Richard %A Cesaretti,Jamie %A Hassan,Waleed %A Samadi,David %A Hall,Simon J %+ Mount Sinai School of Medicine, Departments of Urology & Oncological Sciences, Mount Sinai School of Medicine, Box 1272, One Gustave L. Levy Place, New York, NY, 10029-0751, United States, 1 212 241 0751, michael.diefenbach@mountsinai.org %K Multimedia %K software %K prostate cancer %K patient education %K treatment decision making %K treatment %K decision making %D 2012 %7 13.01.2012 %9 Original Paper %J J Med Internet Res %G English %X Background: Prostate cancer is the most common cancer affecting men in the United States. Management options for localized disease exist, yet an evidence-based criterion standard for treatment still has to emerge. Although 5-year survival rates approach 98%, all treatment options carry the possibility for significant side effects, such as erectile dysfunction and urinary incontinence. It is therefore recommended that patients be actively involved in the treatment decision process. We have developed an Internet/CD-ROM-based multimedia Prostate Interactive Educational System (PIES) to enhance patients’ treatment decision making. PIES virtually mirrors a health center to provide patients with information about prostate cancer and its treatment through an intuitive interface, using videos, animations, graphics, and texts. Objectives: (1) To examine the acceptability and feasibility of the PIES intervention and to report preliminary outcomes of the program in a pilot trial among patients with a new prostate cancer diagnosis, and (2) to explore the potential impact of tailoring PIES treatment information to participants’ information-seeking styles on study outcomes. Methods: Participants (n = 72) were patients with newly diagnosed localized prostate cancer who had not made a treatment decision. Patients were randomly assigned to 3 experimental conditions: (1) control condition (providing information through standard National Cancer Institute brochures; 26%), and PIES (2) with tailoring (43%) and (3) without tailoring to a patient’s information-seeking style (31%). Questionnaires were administrated before (t1) and immediately after the intervention (t2). Measurements include evaluation and acceptability of the PIES intervention, monitoring/blunting information-seeking style, psychological distress, and decision-related variables (eg, decisional confidence, feeling informed about prostate cancer and treatment, and treatment preference). Results: The PIES program was well accepted by patients and did not interfere with the clinical routine. About 79% of eligible patients (72/91) completed the pre- and post-PIES intervention assessments. Patients in the PIES groups compared with those in the control condition were significantly more likely to report higher levels of confidence in their treatment choices, higher levels of helpfulness of the information they received in making a treatment decision, and that the information they received was emotionally reassuring. Patients in the PIES groups compared with those in the control condition were significantly less likely to need more information about treatment options, were less anxious about their treatment choices, and thought the information they received was clear (P < .05). Tailoring PIES information to information-seeking style was not related to decision-making variables. Conclusions: This pilot study confirms that the implementation of PIES within a clinical practice is feasible and acceptable to patients with a recent diagnosis of prostate cancer. PIES improved key decision-making process variables and reduced the emotional impact of a difficult medical decision. %M 22246148 %R 10.2196/jmir.1891 %U http://www.jmir.org/2012/1/e6/ %U https://doi.org/10.2196/jmir.1891 %U http://www.ncbi.nlm.nih.gov/pubmed/22246148 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 4 %P e104 %T Beyond Readability: Investigating Coherence of Clinical Text for Consumers %A Smith,Catherine Arnott %A Hetzel,Scott %A Dalrymple,Prudence %A Keselman,Alla %+ School of Library and Information Studies, University of Wisconsin-Madison, 600 N Park Street, Madison, WI, 53706, United States, 1 608 890 1334, casmith24@wisc.edu %K Health literacy %K comprehension %K vocabulary %K patients %K language tests %K retention (psychology) %D 2011 %7 02.12.2011 %9 Original Paper %J J Med Internet Res %G English %X Background: A basic tenet of consumer health informatics is that understandable health resources empower the public. Text comprehension holds great promise for helping to characterize consumer problems in understanding health texts. The need for efficient ways to assess consumer-oriented health texts and the availability of computationally supported tools led us to explore the effect of various text characteristics on readers’ understanding of health texts, as well as to develop novel approaches to assessing these characteristics. Objective: The goal of this study was to compare the impact of two different approaches to enhancing readability, and three interventions, on individuals’ comprehension of short, complex passages of health text. Methods: Participants were 80 university staff, faculty, or students. Each participant was asked to “retell” the content of two health texts: one a clinical trial in the domain of diabetes mellitus, and the other typical Visit Notes. These texts were transformed for the intervention arms of the study. Two interventions provided terminology support via (1) standard dictionary or (2) contextualized vocabulary definitions. The third intervention provided coherence improvement. We assessed participants’ comprehension of the clinical texts through propositional analysis, an open-ended questionnaire, and analysis of the number of errors made. Results: For the clinical trial text, the effect of text condition was not significant in any of the comparisons, suggesting no differences in recall, despite the varying levels of support (P = .84). For the Visit Note, however, the difference in the median total propositions recalled between the Coherent and the (Original + Dictionary) conditions was significant (P = .04). This suggests that participants in the Coherent condition recalled more of the original Visit Notes content than did participants in the Original and the Dictionary conditions combined. However, no difference was seen between (Original + Dictionary) and Vocabulary (P = .36) nor Coherent and Vocabulary (P = .62). No statistically significant effect of any document transformation was found either in the open-ended questionnaire (clinical trial: P = .86, Visit Note: P = .20) or in the error rate (clinical trial: P = .47, Visit Note: P = .25). However, post hoc power analysis suggested that increasing the sample size by approximately 6 participants per condition would result in a significant difference for the Visit Note, but not for the clinical trial text. Conclusions: Statistically, the results of this study attest that improving coherence has a small effect on consumer comprehension of clinical text, but the task is extremely labor intensive and not scalable. Further research is needed using texts from more diverse clinical domains and more heterogeneous participants, including actual patients. Since comprehensibility of clinical text appears difficult to automate, informatics support tools may most productively support the health care professionals tasked with making clinical information understandable to patients. %M 22138127 %R 10.2196/jmir.1842 %U http://www.jmir.org/2011/4/e104/ %U https://doi.org/10.2196/jmir.1842 %U http://www.ncbi.nlm.nih.gov/pubmed/22138127 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 3 %P e78 %T An Online Resource of Digital Stories About Cancer Genetics: Qualitative Study of Patient Preferences and Information Needs %A Iredale,Rachel %A Mundy,Lisa %A Hilgart,Jennifer %+ Institute of Medical Genetics, Cardiff University, Heath Park, Cardiff, CF14 4XN, United Kingdom, 44 (0)2920 748925, Rachel.Iredale@wales.nhs.uk %K Consumer health information %K familial cancer %K Internet %K narrative medicine %K patient involvement. %D 2011 %7 30.09.2011 %9 Original Paper %J J Med Internet Res %G English %X Background: The Cancer Genetics Service for Wales (CGSW) was established in 1998 as an all-Wales service for individuals with concerns about their family history of cancer. CGSW offers a range of services such as risk assessment, genetic counseling, and genetic testing. Individuals referred to cancer genetics services often have unmet information and support needs, and they value access to practical and experiential information from other patients and health professionals. As a result of the lifelong nature of genetic conditions, a fundamental challenge is to meet the ongoing needs of these patients by providing easily accessible and reliable information. Objectives: Our aims were to explore how the long-term information and support needs of CGSW patients could be met and to assess whether an online bank of digital stories about cancer genetics would be acceptable to patients. Methods: In 2009, CGSW organized patient panels across Wales. During these events, 169 patients were asked for their feedback about a potential online resource of digital stories from CGSW patients and staff. A total of 75 patients registered to take part in the project and 23 people from across Wales agreed to share their story. All participants took part in a follow-up interview. Results: Patient preferences for an online collection of cancer genetics stories were collected at the patient panels. Key topics to be covered by the stories were identified, and this feedback informed the development of the website to ensure that patients’ needs would be met. The 23 patient storytellers were aged between 28 and 75 years, and 19 were female. The digital stories reflect patients’ experiences within CGSW and the implications of living with or at risk of cancer. Follow-up interviews with patient storytellers showed that they shared their experiences as a means of helping other patients and to increase understanding of the cancer genetics service. Digital stories were also collected from 12 members of staff working at CGSW. The digital stories provide reliable and easily accessible information about cancer genetics and are hosted on the StoryBank website (www.cancergeneticsstorybank.co.uk). Conclusions: The Internet is one mechanism through which the long-term information and support needs of cancer genetics patients can be met. The StoryBank is one of the first places where patient and staff stories have been allied to every aspect of a patient pathway through a service and provides patients with an experiential perspective of the cancer genetics “journey.” The StoryBank was developed in direct response to patient feedback and is an innovative example of patient involvement in service development. The stories are a useful resource for newly referred patients, current patients, the general public, and health care professionals. %M 22057223 %R 10.2196/jmir.1735 %U http://www.jmir.org/2011/3/e78/ %U https://doi.org/10.2196/jmir.1735 %U http://www.ncbi.nlm.nih.gov/pubmed/22057223 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 3 %P e54 %T Risk Estimates From an Online Risk Calculator Are More Believable and Recalled Better When Expressed as Integers %A Witteman,Holly O %A Zikmund-Fisher,Brian J %A Waters,Erika A %A Gavaruzzi,Teresa %A Fagerlin,Angela %+ Program in Health Communication and Decision Making, Center for Bioethics and Social Sciences in Medicine, University of Michigan, 300 North Ingalls Building 7C27, Ann Arbor, MI, 48109-5429, United States, 1 734 615 2296, hollywit@med.umich.edu %K Risk %K risk assessment %K communication %K risk communication %K perception %K risk perception %K calculators, programmable %K risk calculator %K Internet %K online %D 2011 %7 07.09.2011 %9 Original Paper %J J Med Internet Res %G English %X Background: Online risk calculators offer different levels of precision in their risk estimates. People interpret numbers in varying ways depending on how they are presented, and we do not know how the number of decimal places displayed might influence perceptions of risk estimates. Objective: The objective of our study was to determine whether precision (ie, number of decimals) in risk estimates offered by an online risk calculator influences users’ ratings of (1) how believable the estimate is, (2) risk magnitude (ie, how large or small the risk feels to them), and (3) how well they can recall the risk estimate after a brief delay. Methods: We developed two mock risk calculator websites that offered hypothetical percentage estimates of participants’ lifetime risk of kidney cancer. Participants were randomly assigned to a condition where the risk estimate value rose with increasing precision (2, 2.1, 2.13, 2.133) or the risk estimate value fell with increasing precision (2, 1.9, 1.87, 1.867). Within each group, participants were randomly assigned one of the four numbers as their first risk estimate, and later received one of the remaining three as a comparison. Results: Participants who completed the experiment (N = 3422) were a demographically diverse online sample, approximately representative of the US adult population on age, gender, and race. Participants whose risk estimates had no decimal places gave the highest ratings of believability (F3,3384 = 2.94, P = .03) and the lowest ratings of risk magnitude (F3,3384 = 4.70, P = .003). Compared to estimates with decimal places, integer estimates were judged as highly believable by 7%–10% more participants (χ23 =17.8, P < .001). When comparing two risk estimates with different levels of precision, large majorities of participants reported that the numbers seemed equivalent across all measures. Both exact and approximate recall were highest for estimates with zero decimals. Odds ratios (OR) for correct approximate recall (defined as being within 50% of the original estimate) were, for one decimal place, OR = 0.65 (95% CI 0.49–0.86), for two decimal places, OR = 0.70 (95% CI 0.53–0.94), and for three decimal places, 0.61 (95% CI 0.45–0.81). Exact recall showed a similar pattern, with larger effects. Conclusions: There are subtle but measurable differences in how people interpret risk estimates of varying precision. Adding decimal places in risk calculators offers little to no benefit and some cost. Rounding to the nearest integer is likely preferable for communicating risk estimates via risk calculators so that they might be remembered correctly and judged as believable. %M 21908265 %R 10.2196/jmir.1656 %U http://www.jmir.org/2011/3/e54/ %U https://doi.org/10.2196/jmir.1656 %U http://www.ncbi.nlm.nih.gov/pubmed/21908265 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 3 %P e60 %T Cool but Counterproductive: Interactive, Web-Based Risk Communications Can Backfire %A Zikmund-Fisher,Brian J %A Dickson,Mark %A Witteman,Holly O %+ Department of Health Behavior and Health Education, School of Public Health, University of Michigan, 1415 Washington Heights, Ann Arbor, MI, 48109-2029, United States, 1 734 936 9179, bzikmund@umich.edu %K Patient-provider communication %D 2011 %7 25.08.2011 %9 Original Paper %J J Med Internet Res %G English %X Background: Paper-based patient decision aids generally present risk information using numbers and/or static images. However, limited psychological research has suggested that when people interactively graph risk information, they process the statistics more actively, making the information more available for decision making. Such interactive tools could potentially be incorporated in a new generation of Web-based decision aids. Objective: The objective of our study was to investigate whether interactive graphics detailing the risk of side effects of two treatments improve knowledge and decision making over standard risk graphics. Methods: A total of 3371 members of a demographically diverse Internet panel viewed a hypothetical scenario about two hypothetical treatments for thyroid cancer. Each treatment had a chance of causing 1 of 2 side effects, but we randomly varied whether one treatment was better on both dimensions (strong dominance condition), slightly better on only one dimension (mild dominance condition), or better on one dimension but worse on the other (trade-off condition) than the other treatment. We also varied whether respondents passively viewed the risk information in static pictograph (icon array) images or actively manipulated the information by using interactive Flash-based animations of “fill-in-the-blank” pictographs. Our primary hypothesis was that active manipulation would increase respondents’ ability to recognize dominance (when available) and choose the better treatment. Results: The interactive risk graphic conditions had significantly worse survey completion rates (1110/1695, 65.5% vs 1316/1659, 79.3%, P < .001) than the static image conditions. In addition, respondents using interactive graphs were less likely to recognize and select the dominant treatment option (234/380, 61.6% vs 343/465, 73.8%, P < .001 in the strong dominance condition). Conclusions: Interactivity, however visually appealing, can both add to respondent burden and distract people from understanding relevant statistical information. Decision-aid developers need to be aware that interactive risk presentations may create worse outcomes than presentations of static risk graphic formats. %M 21868349 %R 10.2196/jmir.1665 %U http://www.jmir.org/2011/3/e60/ %U https://doi.org/10.2196/jmir.1665 %U http://www.ncbi.nlm.nih.gov/pubmed/21868349 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 3 %P e62 %T Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians %A Hartzler,Andrea %A Pratt,Wanda %+ Division of Biomedical and Health Informatics, School of Medicine, University of Washington, Box 357240, 1959 NE Pacific Street, HSB I-264, Seattle, WA, 98195, United States, 1 206 616 0369, andreah@uw.edu %K Health knowledge %K attitudes %K practice %K social support %K community networks %K peer group %K consumer health informatics %K online communities %K patient expertise %K personalized health %D 2011 %7 16.08.2011 %9 Original Paper %J J Med Internet Res %G English %X Background: When patients need health information to manage their personal health, they turn to both health professionals and other patients. Yet, we know little about how the information exchanged among patients (ie, patient expertise) contrasts with the information offered by health professionals (ie, clinician expertise). Understanding how patients’ experiential expertise contrasts with the medical expertise of health professionals is necessary to inform the design of peer-support tools that meet patients’ needs, particularly with the growing prevalence of largely unguided advice sharing through Internet-based social software. Objective: The objective of our study was to enhance our understanding of patient expertise and to inform the design of peer-support tools. We compared the characteristics of patient expertise with that of clinician expertise for breast cancer. Methods: Through a comparative content analysis of topics discussed and recommendations offered in Internet message boards and books, we contrasted the topic, form, and style of expertise shared in sources of patient expertise with sources of clinician expertise. Results: Patient expertise focused on strategies for coping with day-to-day personal health issues gained through trial and error of the lived experience; thus, it was predominately personal in topic. It offered a wealth of actionable advice that was frequently expressed through the narrative style of personal stories about managing responsibilities and activities associated with family, friends, work, and the home during illness. In contrast, clinician expertise was carried through a prescriptive style and focused on explicit facts and opinions that tied closely to the health care delivery system, biomedical research, and health professionals’ work. These differences were significant between sources of patient expertise and sources of clinician expertise in topic (P < .001), form (P < .001), and style (P < .001). Conclusion: Patients offer other patients substantial expertise that differs significantly from the expertise offered by health professionals. Our findings suggest that experienced patients do not necessarily serve as “amateur doctors” who offer more accessible but less comprehensive or detailed medical information. Rather, they offer valuable personal information that clinicians cannot necessarily provide. The characteristics of patient expertise and the resulting design implications that we identified will help informaticians enhance the design of peer-support tools that will help meet patients’ diverse information needs. %M 21846635 %R 10.2196/jmir.1728 %U http://www.jmir.org/2011/3/e62/ %U https://doi.org/10.2196/jmir.1728 %U http://www.ncbi.nlm.nih.gov/pubmed/21846635 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 3 %P e50 %T 3D Visualization as a Communicative Aid in Pharmaceutical Advice-Giving over Distance %A Östlund,Martin %A Dahlbäck,Nils %A Petersson,Göran Ingemar %+ eHealth Institute, Linnaeus University, Kalmar, SE-39182, Sweden, 46 480 497726, martin.ostlund@lnu.se %K Pharmaceutical instruction %K 3D visualization %K distance communication %D 2011 %7 18.07.2011 %9 Original Paper %J J Med Internet Res %G English %X Background: Medication misuse results in considerable problems for both patient and society. It is a complex problem with many contributing factors, including timely access to product information. Objective: To investigate the value of 3-dimensional (3D) visualization paired with video conferencing as a tool for pharmaceutical advice over distance in terms of accessibility and ease of use for the advice seeker. Methods: We created a Web-based communication service called AssistancePlus that allows an advisor to demonstrate the physical handling of a complex pharmaceutical product to an advice seeker with the aid of 3D visualization and audio/video conferencing. AssistancePlus was tested in 2 separate user studies performed in a usability lab, under realistic settings and emulating a real usage situation. In the first study, 10 pharmacy students were assisted by 2 advisors from the Swedish National Co-operation of Pharmacies’ call centre on the use of an asthma inhaler. The student-advisor interview sessions were filmed on video to qualitatively explore their experience of giving and receiving advice with the aid of 3D visualization. In the second study, 3 advisors from the same call centre instructed 23 participants recruited from the general public on the use of 2 products: (1) an insulin injection pen, and (2) a growth hormone injection syringe. First, participants received advice on one product in an audio-recorded telephone call and for the other product in a video-recorded AssistancePlus session (product order balanced). In conjunction with the AssistancePlus session, participants answered a questionnaire regarding accessibility, perceived expressiveness, and general usefulness of 3D visualization for advice-giving over distance compared with the telephone and were given a short interview focusing on their experience of the 3D features. Results: In both studies, participants found the AssistancePlus service helpful in providing clear and exact instructions. In the second study, directly comparing AssistancePlus and the telephone, AssistancePlus was judged positively for ease of communication (P = .001), personal contact (P = .001), explanatory power (P < .001), and efficiency (P < .001). Participants in both studies said that they would welcome this type of service as an alternative to the telephone and to face-to-face interaction when a physical meeting is not possible or not convenient. However, although AssistancePlus was considered as easy to use as the telephone, they would choose AssistancePlus over the telephone only when the complexity of the question demanded the higher level of expressiveness it offers. For simpler questions, a simpler service was preferred. Conclusions: 3D visualization paired with video conferencing can be useful for advice-giving over distance, specifically for issues that require a higher level of communicative expressiveness than the telephone can offer. 3D-supported advice-giving can increase the range of issues that can be handled over distance and thus improve access to product information. %M 21771714 %R 10.2196/jmir.1437 %U http://www.jmir.org/2011/3/e50/ %U https://doi.org/10.2196/jmir.1437 %U http://www.ncbi.nlm.nih.gov/pubmed/21771714 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 1 %P e14 %T Wikipedia: A Key Tool for Global Public Health Promotion %A Heilman,James M %A Kemmann,Eckhard %A Bonert,Michael %A Chatterjee,Anwesh %A Ragar,Brent %A Beards,Graham M %A Iberri,David J %A Harvey,Matthew %A Thomas,Brendan %A Stomp,Wouter %A Martone,Michael F %A Lodge,Daniel J %A Vondracek,Andrea %A de Wolff,Jacob F %A Liber,Casimir %A Grover,Samir C %A Vickers,Tim J %A Meskó,Bertalan %A Laurent,Michaël R %+ Department of Internal Medicine, University Hospitals Leuven, Herestraat 49, Leuven, B-3000, Belgium, 32 485 143267, michael.laurent@gmail.com %K Internet %K Wikipedia %K public health %K health information %K knowledge dissemination %K patient education %K medical education %D 2011 %7 31.01.2011 %9 Viewpoint %J J Med Internet Res %G English %X The Internet has become an important health information resource for patients and the general public. Wikipedia, a collaboratively written Web-based encyclopedia, has become the dominant online reference work. It is usually among the top results of search engine queries, including when medical information is sought. Since April 2004, editors have formed a group called WikiProject Medicine to coordinate and discuss the English-language Wikipedia’s medical content. This paper, written by members of the WikiProject Medicine, discusses the intricacies, strengths, and weaknesses of Wikipedia as a source of health information and compares it with other medical wikis. Medical professionals, their societies, patient groups, and institutions can help improve Wikipedia’s health-related entries. Several examples of partnerships already show that there is enthusiasm to strengthen Wikipedia’s biomedical content. Given its unique global reach, we believe its possibilities for use as a tool for worldwide health promotion are underestimated. We invite the medical community to join in editing Wikipedia, with the goal of providing people with free access to reliable, understandable, and up-to-date health information. %M 21282098 %R 10.2196/jmir.1589 %U http://www.jmir.org/2011/1/e14/ %U https://doi.org/10.2196/jmir.1589 %U http://www.ncbi.nlm.nih.gov/pubmed/21282098 %0 Journal Article %@ 1438-8871 %I Gunther Eysenbach %V 13 %N 1 %P e5 %T Presenting Evidence to Patients Online: What Do Web Users Think of Consumer Summaries of Cochrane Musculoskeletal Reviews? %A Brehaut,Jamie C %A Santesso,Nancy %A O'Connor,Annette M %A Lott,Alison %A Lindgaard,Gitte %A Syrowatka,Ania %A Graham,Ian D %A Tugwell,Peter S %+ Clinical Epidemiology Program, Ottawa Hospital Research Institute, The Ottawa Hospital, ASB 2-004, Box 693-1053 Carling Avenue, Ottawa, ON, K1Y 4E9, Canada, 1 613 798 5555 ext 13432, jbrehaut@ohri.ca %K Decision support techniques %K health care surveys %K Internet %K patient education %K patient satisfaction %K patient-centered care %K musculoskeletal diseases %D 2011 %7 18.01.2011 %9 Original Paper %J J Med Internet Res %G English %X Background: The Internet has the potential to be an effective medium for delivering health care knowledge to consumers. While computer usability research makes recommendations about how to present Web-based information generally, there remains no clear guidance on how to present specific forms of health care research evidence online in a way that facilitates understanding and good health care decision making. Objective: The two goals of this study were to describe the Cochrane Musculoskeletal Group’s (CMSG’s) process for developing online patient-focused summaries of systematic reviews and to evaluate the impressions of these summaries formed by users. Methods: A process for summarizing the results of systematic reviews via consumer summaries has evolved over 15 years. An evaluation of this approach took the form of Internet surveys on the Arthritis Society of Canada website and surveys of members of the Canadian Arthritis Patient Alliance (CAPA). Respondents provided information on background, relationship to the decision, their satisfaction with and preparation for decision making, and suggestions for improvements to the summaries. Survey data were collected between August 1, 2005, and February 28, 2006. Results: A total of 261 respondents completed the survey. The majority (226/261 or 87%) of respondents reported having an arthritis-related condition. The consumer summary approach was generally reviewed favorably by respondents, with most agreeing that the summary provided appropriate information (177/261 or 68%), would be useful to others (160/261 or 61%), was well laid out (159/261 or 61%), was easy to learn from (157/261 or 60%), and was useful to the reader (153/261 or 59%). Areas of potential improvement were indicated by relatively fewer respondents agreeing that they could easily find all the information they wanted (118/261 or 45%), by a substantial proportion being unable to judge whether the providers of the information are reliable (80/261 or 31%), and by a similar proportion being unable to determine whether the information presented was the best available (68/261 or 26%). Conclusions: The CMSG has developed an approach to summarizing the results of often-technical systematic reviews into public-friendly consumer summaries. Our online survey showed that this approach was generally well liked but identified specific areas for improvement. Feedback from this survey will help to reshape and improve the current template for consumer summaries used by the CMSG. %M 21247863 %R 10.2196/jmir.1532 %U http://www.jmir.org/2011/1/e5/ %U https://doi.org/10.2196/jmir.1532 %U http://www.ncbi.nlm.nih.gov/pubmed/21247863