%0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e63712 %T Improving Recruitment Through Social Media and Web-Based Advertising to Evaluate the Genetic Risk and Long-Term Complications in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Community-Based Survey %A Williams,Elizabeth A %A Martin-Pozo,Michelle D %A Yu,Alexis H %A Daniels,Krystyna %A Marks,Madeline %A O'Connor,April %A Phillips,Elizabeth J %K Stevens-Johnson syndrome %K SJS %K toxic epidermal necrolysis %K TEN %K social media %K Google Ads %K recruitment %K diversity %K accessibility %K rare disease %K adverse drug reaction %K severe cutaneous adverse reaction %K SCAR %D 2025 %7 7.5.2025 %9 %J J Med Internet Res %G English %X Background: Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are genetically mediated, life-threatening reactions usually caused by a medication in adults. These genetic associations promise an opportunity for pre-prescription screening, prevention, and understanding influences at a population level. Importantly, older adults disproportionally face more severe SJS/TEN reactions and higher mortality rates. However, the study of genetic risk and long-term sequelae of SJS/TEN across racially diverse populations and age groups is hampered by many factors, including rarity, social disparities, and trust in health care and providers, impacting access to hospital- and clinic-based research studies. Objective: This paper aims to explore the utility of multiple social media and web-based search tools to increase study enrollment numbers, diversity, and inclusivity of all populations and ages in the SJS Survivor Study. Methods: The community-based SJS/TEN Survivor Study remotely recruited drug-induced SJS/TEN survivors in the United States. The aims were to help determine genetic risk and long-term outcomes of SJS/TEN. Baseline recruitment included advertisements through the SJS Foundation website and American Burn Association newsletter. Two years into the study, in hopes of improving accessibility and enrollment diversity, social media ads were introduced on the Vanderbilt University Medical Center (VUMC) Facebook and Instagram accounts. Posts were created using flyers and 60-second SJS/TEN survivor video vignettes. Finally, we launched a nationwide Google Ad campaign. To understand the impact of the additional online advertising, we measured the change in registration in both the study interest and the effectiveness of implementation of specific social media and web-based search tools before and after implementation. Results: With the introduction of social media and Google Ads, we report a 48.6% increase in enrollment overall and a 289.5% increase in participation interest. We noticed the ads were accessible to all age groups and notably reported a more even age distribution of enrolled participants from 18 through 74 years, with an average of 15% enrolled in each age category. The largest increase in any age category was seen in the 65‐ to 74-year-old patients (n=19), with 16.5% of the age distribution. The most significant increase in enrollment and diversity of responses came from Google Ads, with a total of 201 expressions of interest, from 56 enrolled participants, 33% of which self-identified as non-White. VUMC Facebook ads had an enrollment rate of 15.3%, and VUMC Instagram ads saw an enrollment rate of 14.3%. Conclusion: Social media and web-based search tools differ in their enrollment effectiveness. Google Ads were found to be the most effective advertisement for recruitment in this community-based study. Each of the social media and web-based strategies used increased enrollment numbers, accessibility to more age ranges, and diversity of enrollment. They show promise as tools to improve inclusion and enrollment in rare disease research such as SJS/TEN. %R 10.2196/63712 %U https://jmir.jmir.org/2025/1/e63712 %U https://doi.org/10.2196/63712 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60884 %T Viability of Web-Based Respondent-Driven Sampling of Belgian Men Who Have Sex With Men: Process Evaluation %A Thunnissen,Estrelle %A Buffel,Veerle %A Campbell,Linda %A Vuylsteke,Bea %A Bos,Philippe %A Wouters,Edwin %+ Centre for Population, Family and Health, Department of Sociology, University of Antwerp, Prinsstraat 13, Antwerp, 2000, Belgium, 32 032654111, estrelle.thunnissen@uantwerpen.be %K web-based respondent-driven sampling %K men who have sex with men %K Medical Resource Council framework %K population inference %K nonparticipation %K overresearch %K survey fatigue %D 2025 %7 5.5.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Obtaining a representative sample is a substantial challenge when undertaking health research among hidden and hard-to-reach populations such as men who have sex with men Web-based respondent-driven sampling (WEB RDS) was developed to overcome such sampling challenges and to create population estimates based on network and sampling characteristics. Despite a decade of research, it remains unclear whether WEB RDS is suitable for sampling hidden populations such as men who have sex with men. Objective: This study aims to evaluate how viable the WEB RDS methodology is for obtaining a nationwide sample of men who have sex with men, suitable for population inference of sexual health characteristics, in Belgium. Methods: We adapted the Medical Resource Council process evaluation framework for interventions, to evaluate an empirical WEB RDS. Viewing “WEB RDS” as a complex intervention with respondent-driven recruitment as the aim, we evaluated indicators of context, implementation, mechanisms of impact, and performance. We analyzed the data using a mixed methods approach that integrated findings from quantitative analysis, such as RDS diagnostics, and qualitative thematic analysis. Results: Sampling did not reach a sufficient sample size (n=193) to compensate for an RDS design effect of 3 and the number of recruitment waves was low (waves=7). A visual examination of the convergence and bottleneck plots indicates that many more waves of recruitment would be needed for population estimates to become independent of the seeds. However, producing further waves was impeded by challenges inherent to the research context and process. Men who have sex with men and their community organization representatives indicated that, in Belgium, men who have sex with men are overresearched, with low motivation for the topic of sexual health and digital etiquette dictating not sharing survey links. A moderate reward of €10-€30 (US $11.2-$33.6) with a dual incentive structure was insufficient to overcome these barriers. Conclusions: This study indicates that WEB RDS, even with a moderate incentive, is not a viable sampling strategy for obtaining valid population estimates of sexual health traits of men who have sex with men in Belgium. The study emphasizes the need to understand men who have sex with men research motivation and topic saliency. Additionally, the study highlights the importance of digital etiquette. Finally, the study showcases the use of the adapted Medical Research Council framework for evaluating WEB RDS methodology. %M 40324174 %R 10.2196/60884 %U https://www.jmir.org/2025/1/e60884 %U https://doi.org/10.2196/60884 %U http://www.ncbi.nlm.nih.gov/pubmed/40324174 %0 Journal Article %@ 2817-1705 %I JMIR Publications %V 4 %N %P e64845 %T Clinical Laboratory Parameter–Driven Machine Learning for Participant Selection in Bioequivalence Studies Among Patients With Gastric Cancer: Framework Development and Validation Study %A Shon,Byungeun %A Seong,Sook Jin %A Choi,Eun Jung %A Gwon,Mi-Ri %A Lee,Hae Won %A Park,Jaechan %A Chung,Ho-Young %A Jeong,Sungmoon %A Yoon,Young-Ran %K machine learning %K participant enrollment %K clinical trial %K eligibility criteria %K clinical laboratory test %K ML %K support %K electronic medical record %K patient enrollment %K model development %K Korea %K gastric cancer %K framework %K AI %K artificial intelligence %K trial %D 2025 %7 5.5.2025 %9 %J JMIR AI %G English %X Background: Insufficient participant enrollment is a major factor responsible for clinical trial failure. Objective: We formulated a machine learning (ML)–based framework using clinical laboratory parameters to identify participants eligible for enrollment in a bioequivalence study. Methods: We acquired records of 11,592 patients with gastric cancer from the electronic medical records of Kyungpook National University Hospital in Korea. The ML model was developed using 8 clinical laboratory parameters, including complete blood count and liver and kidney function tests, along with the dates of acquisition. Two datasets were collected: (1) a training dataset to design an ML-based candidate selection method and (2) a test dataset to evaluate the performance of the proposed method. The generalization performance of the ML-based method was confirmed using the F1-score and the area under the curve (AUC). The proposed model was compared with a random selection method to evaluate its efficacy in recruiting participants. Results: The weighted ensemble model achieved strong performance with an F1-score above 0.8 and an AUC value exceeding 0.8, demonstrating its ability to accurately identify valid clinical trial candidates while minimizing misclassification. Its high sensitivity further enhanced the model’s efficiency in prioritizing patients for screening. In a case study, the proposed ML model reduced the workload by 57%, efficiently identifying 150 valid patients from a pool of 209, compared to the 485 patients required by random selection. Conclusions: The proposed ML-based framework using clinical laboratory parameters can be used to identify patients eligible for a clinical trial, enabling faster participant enrollment. %R 10.2196/64845 %U https://ai.jmir.org/2025/1/e64845 %U https://doi.org/10.2196/64845 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e63687 %T Challenging the Continued Usefulness of Social Media Recruitment for Surveys of Hidden Populations of People Who Use Opioids %A Nesoff,Elizabeth D %A Palamar,Joseph J %A Li,Qingyue %A Li,Wenqian %A Martins,Silvia S %+ Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania Perelman School of Medicine, 423 Guardian Dr, Philadelphia, PA, 19104, United States, 1 215 662 2560, elizabeth.nesoff@pennmedicine.upenn.edu %K opioids %K substance use %K survey methods %K social media %K recruitment %K survey %K drug overdose %K substance use disorder %K online recruitment %K online survey %K mental health %K addiction %K data collection %D 2025 %7 30.4.2025 %9 Viewpoint %J J Med Internet Res %G English %X Historically, recruiting research participants through social media facilitated access to people who use opioids, capturing a range of drug use behaviors. The current rapidly changing online landscape, however, casts doubt on social media’s continued usefulness for study recruitment. In this viewpoint paper, we assessed social media recruitment for people who use opioids and described challenges and potential solutions for effective recruitment. As part of a study on barriers to harm reduction health services, we recruited people who use opioids in New York City to complete a REDCap (Research Electronic Data Capture; Vanderbilt University) internet-based survey using Meta (Facebook and Instagram), X (formerly known as Twitter), Reddit, and Discord. Eligible participants must have reported using opioids (heroin, prescription opioids, or fentanyl) for nonprescription purposes in the past 90 days and live or work in New York City. Data collection took place from August 2023 to November 2023. Including study purpose, compensation, and inclusion criteria caused Meta’s social media platforms and X to flag our ads as “discriminatory” and “spreading false information.” Listing incentives increased bot traffic across all platforms despite bot prevention activities (eg, reCAPTCHA and counting items in an image). We instituted a rigorous post hoc data cleaning protocol (eg, investigating duplicate IP addresses, participants reporting use of a fictitious drug, invalid ZIP codes, and improbable drug use behaviors) to identify bot submissions and repeat participants. Participants received a US $20 gift card if still deemed eligible after post hoc data inspection. There were 2560 submissions, 93.2% (n=2387) of which were determined to be from bots or malicious responders. Of these, 23.9% (n=571) showed evidence of a duplicate IP or email address, 45.9% (n=1095) reported consuming a fictitious drug, 15.8% (n=378) provided an invalid ZIP code, and 9.4% (n=225) reported improbable drug use behaviors. The majority of responses deemed legitimate (n=173) were collected from Meta (n=79, 45.7%) and Reddit (n=48, 27.8%). X’s ads were the most expensive (US $1.96/click) and yielded the fewest participants (3 completed surveys). Social media recruitment of hidden populations is challenging but not impossible. Rigorous data collection protocols and post hoc data inspection are necessary to ensure the validity of findings. These methods may counter previous best practices for researching stigmatized behaviors. %M 40306644 %R 10.2196/63687 %U https://www.jmir.org/2025/1/e63687 %U https://doi.org/10.2196/63687 %U http://www.ncbi.nlm.nih.gov/pubmed/40306644 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 13 %N %P e56329 %T Using Social Media to Recruit a Diverse Sample of Participants for a Mobile Health (mHealth) Intervention to Increase Physical Activity: Exploratory Study %A Pathak,Laura %A Hernandez-Ramos,Rosa %A Rosales,Karina %A Miramontes-Gomez,Jose %A Garcia,Faviola %A Yip,Vivian %A Sudarshan,Suchitra %A Cemballi,Anupama Gunshekar %A Lyles,Courtney %A Aguilera,Adrian %K mHealth %K social media %K research subject recruitment %K Spanish speakers %K Spanish %K physical activity %K clinical research %K social media platform %K smartphone %K text messaging %K machine learning %K diabetes %K depression %K Facebook %K depressive symptoms %K screening survey %K online platform %K cost-effectiveness %K mobile health %D 2025 %7 28.4.2025 %9 %J JMIR Mhealth Uhealth %G English %X Background: Recruitment of demographically diverse samples in clinical research is often challenging and even more so during the COVID-19 pandemic when traditional in-person recruitment methods could not be implemented. Social media platforms offer an alternative approach for recruiting diverse samples of participants for clinical trials, including those testing digital health interventions. This approach allowed for a quicker recruitment process without the physical constraints associated with traditional in-person methods. Objective: This study aimed to detail the online and social media campaigns used to recruit participants for “Diabetes and Mental Health Adaptive Notification Tracking and Evaluation” (DIAMANTE), a randomized controlled trial testing a smartphone-based intervention (a text messaging system that uses machine learning to personalize content) to increase physical activity for patients with diabetes and depression. In describing the recruitment process, we seek to offer insights to the research community on recruitment through online and social media advertisements for diverse communities. Methods: This study sought to recruit demographically diverse individuals in the United States through social media, including paid advertisements on Craigslist and Facebook (Meta). For the DIAMANTE project recruitment, we created 18 personas that mapped into the population’s target demographics using a user-centered design methodology. We deployed targeted English and Spanish ads on Craigslist and Facebook in 78 cities based on county-level demographics and diabetes prevalence data to target diverse individuals aged 18‐75 years old, who had been diagnosed with diabetes and had documented depressive symptoms. Results: A total of 1379 individuals completed the study’s initial screening survey. Of those, 71 respondents on Facebook and 508 on Craigslist were interested in enrolling in our study. In total, 26 out of 58 (45%) eligible respondents from Facebook and 50 out of 235 (21.3%) eligible respondents from Craigslist were eventually recruited in the randomized controlled trial. In all, both platforms showed poor performance in recruiting Spanish speakers, with Facebook advertisements accounting for 0 and Craigslist for 4 (5.3%) of such participants. When it came to English speakers, Craigslist proved to be the better performing platform compared to Facebook, both in terms of reach (579 vs 71) and cost-effectiveness (US $67.61 in average cost per recruited participant vs US $80.16). While Craigslist ads reached more people, resulting in more completed screening surveys than Facebook ads, there was a higher number of ineligible and incomplete enrollment from Craigslist compared with Facebook, leading to a relatively lower conversion rate (9.4% vs 36.6%). Importantly, participants recruited through Craigslist were more ethnically and racially diverse than those recruited from Facebook. Conclusions: Results from this study revealed that it is possible to recruit diverse sample sets using social media and online advertisements. However, despite targeted recruitment efforts, social media recruitment of Spanish speakers proved especially challenging and costly. Further research is needed to determine systematic, online methods for recruiting marginalized communities. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2019-034723 %R 10.2196/56329 %U https://mhealth.jmir.org/2025/1/e56329 %U https://doi.org/10.2196/56329 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e68093 %T Using Social Media to Engage and Enroll Underrepresented Populations: Longitudinal Digital Health Research %A Harry,Christiana %A Goodday,Sarah %A Chapman,Carol %A Karlin,Emma %A Damian,April Joy %A Brooks,Alexa %A Boch,Adrien %A Lugo,Nelly %A McMillan,Rebecca %A Tempero,Jonell %A Swanson,Ella %A Peabody,Shannon %A McKenzie,Diane %A Friend,Stephen %+ 4YouandMe, 185 Great Neck Rd Ste 447, Great Neck, NY, 11021, United States, 1 206 861 3655, christianacharry@gmail.com %K digital health research %K digital health technology %K recruitment %K research subject %K participant %K pregnancy %K maternal health %K underrepresented populations %K health equity %K diversity %K marginalized %K advertisement %K social media %K retention %K attrition %K dropout %D 2025 %7 15.4.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Emerging digital health research poses roadblocks to the inclusion of historically marginalized populations in research. Exclusion of underresourced communities in digital health research is a result of multiple factors (eg, limited technology access, decreased digital literacy, language barriers, and historical mistrust of research and research institutions). Alternative methods of access and engagement may aid in achieving long-term sustainability of diversified participation in digital health research, ensuring that developed technologies and research outcomes are effective and equitable. Objective: This study aims to (1) characterize socioeconomic and demographic differences in individuals who enrolled and engaged with different remote, digital, and traditional recruitment methods in a digital health pregnancy study and (2) determine whether social media outreach is an efficient way of recruiting and retaining specific underrepresented populations (URPs) in digital health research. Methods: The Better Understanding the Metamorphosis of Pregnancy (BUMP) study was used as a case example. This is a prospective, observational, cohort study using digital health technology to increase understanding of pregnancy among 524 women, aged 18-40 years, in the United States. The study used different recruitment strategies: patient portal for genetic testing results, paid/unpaid social media ads, and a community health organization providing care to pregnant women (Moses/Weitzman Health System). Results: Social media as a recruitment tool to engage URPs in a digital health study was overall effective, with a 23.6% (140/594) enrollment rate of those completing study interest forms across 25 weeks. Community-based partnerships were less successful, however, resulting in 53.3% (57/107) engagement with recruitment material and only 8.8% (5/57) ultimately enrolling in the study. Paid social media ads provided access to and enrollment of a diverse potential participant pool of race- or ethnicity-based URPs in comparison to other digital recruitment channels. Of those that engaged with study materials, paid recruitment had the highest percentage of non-White (non-Hispanic) respondents (85/321, 26.5%), in comparison to unpaid ads (Facebook and Reddit; 37/167, 22.2%). Of the enrolled participants, paid ads also had the highest percentage of non-White (non-Hispanic) participants (14/70, 20%), compared to unpaid ads (8/52, 15.4%) and genetic testing service subscribers (72/384, 18.8%). Recruitment completed via paid ads (Instagram) had the highest study retention rate (52/70, 74.3%) across outreach methods, whereas recruitment via community-based partnerships had the lowest (2/5, 40%). Retention of non-White (non-Hispanic) participants was low across recruitment methods: paid (8/52, 15.4%), unpaid (3/35, 14.3%), and genetic testing service subscribers (50/281, 17.8%). Conclusions: Social media recruitment (paid/unpaid) provides access to URPs and facilitates sustained retention similar to other methods, but with varying strengths and weaknesses. URPs showed lower retention rates than their White counterparts across outreach methods. Community-based recruitment showed lower engagement, enrollment, and retention. These findings highlight social media’s potential for URP engagement and enrollment, illuminate potential roadblocks of traditional methods, and underscore the need for tailored research to improve URP enrollment and retention. %M 40233355 %R 10.2196/68093 %U https://formative.jmir.org/2025/1/e68093 %U https://doi.org/10.2196/68093 %U http://www.ncbi.nlm.nih.gov/pubmed/40233355 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e70852 %T Approach to Design and Evaluate Digital Tools to Enhance Young Adult Participation in Clinical Trials: Co-Design and Controlled Intercept Study %A Mackey,Tim %A Cuomo,Raphael E %A Xu,Qing %A McMann,Tiana J %A Li,Zhuoran %A Cai,Mingxiang %A Wenzel,Christine %A Yang,Joshua S %+ Global Health Program, Department of Anthropology, University of California San Diego, 9500 Gilman Drive, MC: 0505, La Jolla, CA, 9209, United States, 1 951 491 4161, tmackey@ucsd.edu %K health %K clinical trials %K COVID-19 %K digital health %K coronavirus disease %D 2025 %7 11.4.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Certain populations are underrepresented in clinical trials, limiting the generalizability of new treatments and their efficacy and uptake in these populations. It is essential to identify and understand effective strategies for enrolling young adults in clinical trials, as they represent a vital and key demographic for future clinical trial participation. Objective: This study aimed to develop, test, and evaluate digital tools designed to encourage the participation of young adults in the clinical trial process. An interdisciplinary approach, incorporating social listening, qualitative focus groups, and co-design workshops, was used to achieve this goal. Methods: Digital tools were designed and evaluated using a 4-phase approach that included: (1) social listening to characterize lived experiences with COVID-19 trials as self-reported by online users, (2) qualitative focus groups with young adults to explore specific lived attitudes and experiences related to COVID-19 clinical research hesitancy and engagement, (3) a series of cocreation and co-design workshops to build digital tools aimed at encouraging clinical trial participation, and (4) a controlled intercept study to assess the usability and specific outcome measures of the co-designed digital tools among young adults. Results: A significantly higher change in the likelihood of participating in a clinical trial post exposure was observed among study participants when exposed to prototypes of a mobile app (Δ=0.74 on a 10-point scale, P<.01) and website (Δ=0.93, P<.01) compared to those exposed to a Facebook ad (Δ=0.21) but not a digital flyer (Δ=0.58). Furthermore, those exposed to the mobile app (x̅=5.76, P=.04) and electronic flier (x̅=5.72, P=.04), but not the website (x̅=5.55), exhibited significantly higher postexposure interest in learning about clinical trials when compared to participants exposed to the Facebook (Meta) ad (x̅=5.06). Participants in the intercept study were more likely to consider joining a clinical trial after seeing a mobile app (Δ=0.74, P<.01) or website (Δ=0.93, P<.001) compared to a Facebook ad (Δ=0.21), but the digital flyer (Δ=0.58) did not show a significant difference. In addition, those who saw the mobile app (x̅=5.76, P=.04) or the digital flyer (x̅=5.72, P=.04) showed more interest in learning about clinical trials than those who saw the Facebook ad (x̅=5.06), though the website (x̅= 5.55) did not significantly impact interest. Conclusions: Mobile apps and web pages co-designed with young diverse adults may represent effective digital tools to advance shared goals of encouraging inclusive clinical trials. %M 40215482 %R 10.2196/70852 %U https://www.jmir.org/2025/1/e70852 %U https://doi.org/10.2196/70852 %U http://www.ncbi.nlm.nih.gov/pubmed/40215482 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e58916 %T Association of Social Media Recruitment and Depression Among Racially and Ethnically Diverse Metabolic and Bariatric Surgery Candidates: Prospective Cohort Study %A Francis,Jackson M %A Neti,Sitapriya S %A Polavarapu,Dhatri %A Atem,Folefac %A Xie,Luyu %A Kapera,Olivia %A Mathew,Matthew S %A Marroquin,Elisa %A McAdams,Carrie %A Schellinger,Jeffrey %A Ngenge,Sophia %A Kukreja,Sachin %A Schneider,Benjamin E %A Almandoz,Jaime P %A Messiah,Sarah E %K social media %K social media recruitment %K depression %K depressed %K major depressive disorder %K MDD %K depressive disorder %K depressive %K race %K racial %K racial differences %K ethnic %K ethnic differences %K ethnicity %K metabolic surgery %K bariatric surgery %K obesity %K obese %K online health %K ethics %K mental health %K eHealth %K internet %K digital health %K digital mental health %K online interventions %K public engagement %K public health %D 2025 %7 10.4.2025 %9 %J JMIR Form Res %G English %X Background: Due to the widespread use of social media and the internet in today’s connected world, obesity and depression rates are increasing concurrently on a global scale. This study investigated the complex dynamics involving social media recruitment for scientific research, race, ethnicity, and depression among metabolic and bariatric surgery (MBS) candidates. Objective: This study aimed to determine (1) the association between social media recruitment and depression among MBS candidates and (2) racial and ethnic differences in social media recruitment engagement. Methods: The analysis included data from 380 adult MBS candidates enrolled in a prospective cohort study from July 2019 to December 2022. Race and ethnicity, recruitment method (social media: yes or no), and depression status were evaluated using χ2 tests and logistic regression models. Age, sex, and ethnicity were adjusted in multivariable logistic regression models. Results: The mean age of the candidates was 47.35 (SD 11.6) years, ranging from 18 to 78 years. Participants recruited through social media (n=41, 38.32%) were more likely to report past or current episodes of depression compared to nonsocial media–recruited participants (n=74, 27.11%; P=.03), with a 67% increased likelihood of depression (odds ratio [OR] 1.67, 95% CI 1.04‐2.68, P=.03). Further analysis showed that participants with a history of depression who were below the mean sample age were 2.26 times more likely to be recruited via social media (adjusted OR [aOR] 2.26, 95% CI 1.03‐4.95; P=.04) compared to those above the mean age. Hispanic (n=26, 38.81%) and non-Hispanic White (n=53, 35.10%) participants were significantly more likely to be recruited via social media than non-Hispanic Black (n=27, 18.37%) participants (P<.001). After adjusting for covariates, non-Hispanic Black participants were 60% less likely than non-Hispanic White participants to be recruited via social media (aOR 0.40, 95% CI 0.22‐0.71; P=.002). Conclusions: We found that individuals recruited through social media channels, especially younger participants, were more likely to report past or current episodes of depression compared to those recruited through nonsocial media. The study also showed that non-Hispanic Black individuals are less likely to engage in social media recruitment for scientific research versus other racial and ethnic groups. Future mental health–related studies should consider strategies to mitigate potential biases introduced by recruitment methods to ensure the validity and generalizability of research findings. %R 10.2196/58916 %U https://formative.jmir.org/2025/1/e58916 %U https://doi.org/10.2196/58916 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e70149 %T Digital Health Platform for Maternal Health: Design, Recruitment Strategies, and Lessons Learned From the PowerMom Observational Cohort Study %A Ajayi,Toluwalase %A Kueper,Jacqueline %A Ariniello,Lauren %A Ho,Diana %A Delgado,Felipe %A Beal,Matthew %A Waalen,Jill %A Baca Motes,Katie %A Ramos,Edward %+ Jacobs Center for Health Innovation, Department of Medicine and Pediatrics, University of California, San Diego, 9300 Campus Point Drive, MC 7196, La Jolla, CA, 92037, United States, 1 785 218 1643, tajayi@health.ucsd.edu %K maternal health research %K digital health platforms %K pregnancy monitoring %K decentralized clinical trials %K participant engagement %K health disparities %D 2025 %7 7.4.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Maternal health research faces challenges in participant recruitment, retention, and data collection, particularly among underrepresented populations. Digital health platforms like PowerMom (Scripps Research) offer scalable solutions, enabling decentralized, real-world data collection. Using innovative recruitment and multimodal techniques, PowerMom engages diverse cohorts to gather longitudinal and episodic data during pregnancy and post partum. Objective: This study aimed to evaluate the design, implementation, and outcomes of the PowerMom research platform, with a focus on participant recruitment, engagement, and data collection across diverse populations. Secondary objectives included identifying challenges encountered during implementation and deriving lessons to inform future digital maternal health studies. Methods: Participants were recruited via digital advertisements, pregnancy apps, and the PowerMom Consortium of more than 15 local and national organizations. Data collection included self-reported surveys, wearable devices, and electronic health records. Anomaly detection measures were implemented to address fraudulent enrollment activity. Recruitment trends and descriptive statistics from survey data were analyzed to summarize participant characteristics, assess engagement metrics, and quantify missing data to identify gaps. Results: Overall, 5617 participants were enrolled from 2021 to 2024, with 69.8% (n=3922) providing demographic data. Of these, 48.5% (2723/5617) were younger than 35 years, 14% (788/5617) identified as Hispanic or Latina, and 13.7% (770/5617) identified as Black or African American. Geographic representation spanned all 50 US states, Puerto Rico, and Guam, with 58.3% (3276/5617) residing in areas with moderate access to maternity care and 16.4% (919/5617) in highly disadvantaged neighborhoods based on the Area Deprivation Index. Enrollment rates increased substantially over the study period, from 55 participants in late 2021 to 3310 in 2024, averaging 99.4 enrollments per week in 2024. Participants completed a total of 17,123 surveys, with 71.8% (4033/5617) completing the Intake Survey and 12.4% (697/5617) completing the Postpartum Survey. Wearable device data were shared by 1168 participants, providing more than 378,000 daily biometric measurements, including activity levels, sleep, and heart rate. Additionally, 96 participants connected their electronic health records, contributing 276 data points such as diagnoses, medications, and laboratory results. Among pregnancy-related characteristics, 28.1% (1578/5617) enrolled during the first trimester, while 15.1% (849/5617) reported information about the completion of their pregnancies during the study period. Among the 913 participants who shared delivery information, 56.1% (n=512) had spontaneous vaginal deliveries and 17.9% (n=163) underwent unplanned cesarean sections. Conclusions: The PowerMom platform demonstrates the feasibility of using digital tools to recruit and engage diverse populations in maternal health research. Its ability to integrate multimodal data sources showcases its potential to provide comprehensive maternal-fetal health insights. Challenges with data completeness and survey attrition underscore the need for sustained participant engagement strategies. These findings offer valuable lessons for scaling digital health platforms and addressing disparities in maternal health research. Trial Registration: ClinicalTrials.gov NCT03085875; https://clinicaltrials.gov/study/NCT03085875 %M 40194282 %R 10.2196/70149 %U https://formative.jmir.org/2025/1/e70149 %U https://doi.org/10.2196/70149 %U http://www.ncbi.nlm.nih.gov/pubmed/40194282 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 17 %N %P e50225 %T Impact of Platform Design and Usability on Adherence and Retention: Randomized Web- and Mobile-Based Longitudinal Study %A Jiang,Xinrui %A Timmons,Michelle %A Boroda,Elias %A Onakomaiya,Marie %K behavioral science %K electronic patient-reported outcomes %K ePROs %K retention %K adherence %K patient engagement %K clinical trials %K mobile phone %D 2025 %7 27.3.2025 %9 %J J Particip Med %G English %X Background: Low retention and adherence increase clinical trial costs and timelines. Burdens associated with participating in a clinical trial contribute to early study termination. Electronic patient-reported outcome (ePRO) tools reduce participant burden by allowing remote participation, and facilitate communication between researchers and participants. The Datacubed Health (DCH) mobile app is unique among ePRO platforms in its application of behavioral science principles (reward, motivation, identity, etc) in clinical trials to promote engagement, adherence, and retention. Objective: We evaluated the impact of platform design and usability on adherence and retention with a longitudinal study involving repeated patient-facing study instruments. We expected participants assigned to complete instruments in the DCH mobile app to stay in this study longer (increased retention) and complete more surveys while in this study (increased adherence) due to the enhanced motivational elements unique to the participant experience in the DCH app group, and this group’s overall lower burden of participation. Methods: A total of 284 adult participants completed 24 weekly surveys via 1 of 4 modalities (DCH app vs DCH website vs third-party website vs paper) in a web-based and mobile longitudinal study. Participants were recruited from open access websites (eg, Craigslist or Facebook [Meta]), and a closed web-based user group. All participation occurred remotely. Study staff deliberately limited communications with participants to directly assess the main effects of survey administration modality; enrollment and study administration were largely automated. Participants assigned to the DCH app group experienced behavioral science–driven motivational elements related to reward and identity formation throughout their study journey. There was no homolog to this feature in any other tested platform. Participants assigned to the DCH app group accessed study measures using passcodes or smartphone biometrics (face or touch ID). Participants in the DCH website group logged into a website using a username and password. Participants in the third-party website group accessed web-based surveys via personalized emailed links with no need for password authentication. Paper arm participants received paper surveys in the mail. Results: Mode of survey administration (DCH app vs DCH website vs third-party website vs paper) predicted study retention (F9,255=4.22, P<.001) and adherence (F9,162=5.5, P<.001). The DCH app group had greater retention than the paper arm (t=−3.80, P<.001), and comparable retention to the DCH website group. The DCH app group had greater adherence than all other arms (DCH web: t=−2.42, P=.02; third-party web: t=−3.56, P<.001; and paper arm: t=−4.53, P<.001). Conclusions: Using an ePRO platform in a longitudinal study increased retention and adherence in comparison to paper instruments. Incorporating behavioral science design in an ePRO platform resulted in further increase in adherence in a longitudinal study. %R 10.2196/50225 %U https://jopm.jmir.org/2025/1/e50225 %U https://doi.org/10.2196/50225 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e63822 %T Engaging End Users to Inform the Design and Social Marketing Strategy for a Web-Based Sexually Transmitted Infection/Blood-Borne Virus (STI/BBV) Testing Service for Young People in Victoria, Australia: Qualitative Study %A Cardwell,Ethan T %A Ludwick,Teralynn %A Chang,Shanton %A Walsh,Olivia %A Lim,Megan %A Podbury,Rachel %A Evans,David %A Fairley,Christopher K %A Kong,Fabian Y S %A Hocking,Jane S %+ Melbourne School of Population and Global Health, Centre for Epidemiology and Biostatistics, The University of Melbourne, 207 Bouverie Street, Level 3, Parkville, Australia, 61 3 9035 3039, t.cardwell@unimelb.edu.au %K web-based STI/HIV testing %K social marketing %K sexual health %K participatory design %K codesign %K sexually transmitted infections %K STI %K HIV %K Australia %K social media %K survey %K blood-borne viruses %D 2025 %7 27.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: The rates of sexually transmitted infections (STIs) continue to rise across Australia among 16- to 29-year-olds. Timely testing is needed to reduce transmission, but sexual health clinics are at capacity. This demand, coupled with barriers to getting tested faced by young people, has led to web-based services as a pragmatic solution. However, for young people to use these services, they must be acceptable, attractive, and usable. Social marketing principles combined with end user engagement can be used to guide the development of a web-based service and create a marketing strategy to attract them to the service. Objective: Working closely with end users and guided by social marketing, this project explored messaging, design elements (imagery), and promotional strategies that will support high usage of a web-based STI/blood-borne virus (BBV) testing service for young people in Victoria, Australia. Methods: Young people were recruited to participate in half-day workshops via youth organizations and targeted Meta (Facebook/Instagram) advertisements. An initial web-based survey was deployed to inform workshop content. Workshops were held in metropolitan, outer metropolitan, and regional Victoria. Young people were presented with a range of “image territories” developed by a social marketing firm and social marketing messages that were informed by the literature on communicating health messages. Participants discussed the feelings and reactions evoked by the content. Data collected through mixed methods (transcribed notes, audio recording, and physical outputs) were thematically analyzed to understand features of messaging and imagery that would attract young people to use the service. Results: A total of 45 people completed the initial survey with 17 participating in focus group workshops (metropolitan: n=8, outer metropolitan: n=6, and regional: n=3). Young people preferred messages that highlight the functional benefits (confidential, affordable, and accessible) of a web-based service and include professional imagery and logos that elicit trust. Young people indicated that the service should be promoted through digital communications (eg, dating apps and social media), with endorsement from government or other recognized institutions, and via word-of-mouth communications. Conclusions: This study has highlighted the value of applying social marketing theory with end user engagement in developing a web-based STI/BBV testing service. Through the voices of young people, we have established the foundations to inform the design and marketing for Victoria’s first publicly funded web-based STI/BBV testing clinic. Future research will measure the reach and efficacy of social marketing, and how this service complements existing services in increasing STI/BBV testing uptake among young Victorians. %M 40146201 %R 10.2196/63822 %U https://www.jmir.org/2025/1/e63822 %U https://doi.org/10.2196/63822 %U http://www.ncbi.nlm.nih.gov/pubmed/40146201 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 14 %N %P e56803 %T Long-Term Engagement of Diverse Study Cohorts in Decentralized Research: Longitudinal Analysis of “All of Us” Research Program Data %A Yadav,Vijay %A Neto,Elias Chaibub %A Doerr,Megan %A Pratap,Abhishek %A Omberg,Larsson %K digital health %K engagement behavior %K All of Us Research Program %K retention %K decentralized research cohorts %D 2025 %7 19.3.2025 %9 %J Interact J Med Res %G English %X Background: The generalizability of clinical research hinges on robust study designs, which include the recruitment and maintenance of a representative study population. This study examines the evolution of the demographic characteristics of 329,038 participants who enrolled and participated in The All of Us Research Program (AoURP), a decentralized study aimed at representing the diversity of the United States. Objective: The primary objectives of this study were to assess alterations in the demographic composition of the cohort at different protocol stages within AoURP, while analyzing completion rates and timeframes for survey and substudy completion. Additionally, we examined how participant interactions with the program impacted engagement and survey responses. Methods: We conducted a longitudinal analysis of the AoURP data, tracking changes in demographic composition, completion rates, and completion times for surveys and substudies. Comparative analyses were performed to assess differences in engagement and survey completion based on sociodemographic characteristics of participants involved in postenrollment study components. Results: The sociodemographic composition of the cohort that participated in the postenrollment study (eg, optional components) differed significantly from that of the recruited population. The proportion of self-identified White participants increased by 21.2%, whereas the proportion of Black or African American participants decreased by 12.18% (P=.02). Participants who identified as White (n=93,614, 52.7%) and NonHispanic (n=109,279, 42.21%) were more engaged compared to those identifying as Black or African American (n=10,887, 15.76%), Asian (n=4274, 38.72%), or Hispanic (n=12,530, 20.7%; P=.006). Participants’ response times to study surveys and completeness varied across all demographic groups (P<.001). Furthermore, those identifying as White skipped fewer survey questions (1.19) compared to those identifying as Black or African American (1.40) or other racial and ethnic identities (P<.001). Conclusions: The AoURP dataset serves as an exceptional resource for investigating diverse public health concerns. However, the longitudinal analysis of participant-level data underscores a significant skew in population diversity, suggesting the need for targeted strategies to enhance engagement and retention across all groups. Ensuring diversity in the cohort is essential for maintaining the study’s representativeness and the broad applicability of its findings. %R 10.2196/56803 %U https://www.i-jmr.org/2025/1/e56803 %U https://doi.org/10.2196/56803 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e63252 %T Introducing Novel Methods to Identify Fraudulent Responses (Sampling With Sisyphus): Web-Based LGBTQ2S+ Mixed-Methods Study %A MacKinnon,Kinnon Ross %A Khan,Naail %A Newman,Katherine M %A Gould,Wren Ariel %A Marshall,Gin %A Salway,Travis %A Pullen Sansfaçon,Annie %A Kia,Hannah %A Lam,June SH %+ School of Social Work, York University, 4700 Keele Street, Toronto, ON, M3J 1P3, Canada, 1 416 736 2100, kinnonmk@yorku.ca %K sampling %K bots %K transgender %K nonbinary %K detransition %K lesbian, gay, bisexual, and transgender %K mobile phone %D 2025 %7 17.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: The myth of Sisyphus teaches about resilience in the face of life challenges. Detransition after an initial gender transition is an emerging experience that requires sensitive and community-driven research. However, there are significant complexities and costs that researchers must confront to collect reliable data to better understand this phenomenon, including the lack of a uniform definition and challenges with recruitment. Objective: This paper presents the sampling and recruitment methods of a new study on detransition-related phenomena among lesbian, gay, bisexual, transgender, queer, and 2-spirit (LGBTQ2S+) populations. It introduces a novel protocol for identifying and removing bot, scam, and ineligible responses from survey datasets and presents preliminary descriptive sociodemographic results of the sample. This analysis does not present gender-affirming health care outcomes. Methods: To attract a large and heterogeneous sample, 3 different study flyers were created in English, French, and Spanish. Between December 1, 2023, and May 1, 2024, these flyers were distributed to >615 sexual and gender minority organizations and gender care providers in the United States and Canada, and paid advertisements totaling >CAD $7400 (US $5551) were promoted on 5 different social media platforms. Although many social media promotions were rejected or removed, the advertisements reached >7.7 million accounts. Study website visitors were directed from 35 different traffic sources, with the top 5 being Facebook (3,577,520/7,777,218, 46%), direct link (2,255,393/7,777,218, 29%), Reddit (1,011,038/7,777,218, 13%), Instagram (466,633/7,777,218, 6%), and X (formerly known as Twitter; 233,317/7,777,218, 3%). A systematic protocol was developed to identify scam, nonsense, and ineligible responses and to conduct web-based Zoom video platform screening with select participants. Results: Of the 1377 completed survey responses, 957 (69.5%) were deemed eligible and included in the analytic dataset after applying the exclusion protocol and conducting 113 virtual screenings. The mean age of the sample was 25.87 (SD 7.77; median 24, IQR 21-29 years). A majority of the participants were White (Canadian, American, or of European descent; 748/950, 78.7%), living in the United States (704/957, 73.6%), and assigned female at birth (754/953, 79.1%). Many participants reported having a sexual minority identity, with more than half the sample (543/955, 56.8%) indicating plurisexual orientations, such as bisexual or pansexual identities. A minority of participants (108/955, 11.3%) identified as straight or heterosexual. When asked about their gender-diverse identities after stopping or reversing gender transition, 33.2% (318/957) reported being nonbinary, 43.2% (413/957) transgender, and 40.5% (388/957) identified as detransitioned. Conclusions: Despite challenges encountered during the study promotion and data collection phases, a heterogeneous sample of >950 eligible participants was obtained, presenting opportunities for future analyses to better understand these LGBTQ2S+ experiences. This study is among the first to introduce an innovative strategy to sample a hard-to-reach and equity-deserving group, and to present an approach to remove fraudulent responses. %M 40096683 %R 10.2196/63252 %U https://www.jmir.org/2025/1/e63252 %U https://doi.org/10.2196/63252 %U http://www.ncbi.nlm.nih.gov/pubmed/40096683 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 14 %N %P e60548 %T Effective Recruitment or Bot Attack? The Challenge of Internet-Based Research Surveys and Recommendations to Reduce Risk and Improve Robustness %A Donkin,Liesje %A Henry,Nathan %A Kercher,Amy %A Pedersen,Mangor %A Wilson,Holly %A Chan,Amy Hai Yan %+ Department of Psychology and Neuroscience, Auckland University of Technology, Private Bag 92006, Auckland, 1142, New Zealand, 64 21847886, liesje.donkin@aut.ac.nz %K internet-based research %K research methodology %K surveys %K data integrity %K bot attacks %K technology %K data manipulation %K spam %K false %K falsification %K fraudulent %K fraud %K bots %K research methods %K data collection %K verify %K verification %K participants %D 2025 %7 14.3.2025 %9 Viewpoint %J Interact J Med Res %G English %X Internet-based research has exploded in popularity in recent years, enabling researchers to offer both investigations and interventions to broader participant populations than ever before. However, challenges associated with internet-based research have also increased—notably, difficulties verifying participant data and deliberate data manipulation by bot and spam responses. This study presents a viewpoint based on 2 case studies where internet-based research was affected by bot and spam attacks. We aim to share the learnings from these experiences with recommendations for future research practice that may reduce the likelihood or impact of future attacks. The screening and verification processes used are presented and discussed, including the limitations of these. Based on our experience, security and screening within internet-based research platforms are partly effective, but no solution is available to protect researchers completely against bot attacks. Implications for future research and advice for health researchers are discussed. %M 40086470 %R 10.2196/60548 %U https://www.i-jmr.org/2025/1/e60548 %U https://doi.org/10.2196/60548 %U http://www.ncbi.nlm.nih.gov/pubmed/40086470 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e59955 %T Assessment of Fraud Deterrence and Detection Procedures Used in a Web-Based Survey Study With Adult Black Cisgender Women: Description of Lessons Learned and Recommendations %A Sophus,Amber I %A Mitchell,Jason W %+ Department of Health Promotion and Disease Prevention, Robert Stempel College of Public Health & Social Work, Florida International University, 11200 S.W. 8th Street, Miami, FL, 33199, United States, asophus@fiu.edu %K Black women %K HIV %K fraud deterrence %K fraud detection %K web-based research %K online research %K data integrity %K data collection %K survey %D 2025 %7 12.3.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Online research studies enable engagement with more Black cisgender women in health-related research. However, fraudulent data collection responses in online studies raise important concerns about data integrity, particularly when incentives are involved. Objective: The purpose of this study was to assess the strengths and limitations of fraud deterrence and detection procedures implemented in an incentivized, cross-sectional, online study about HIV prevention and sexual health with Black cisgender women living in Texas. Methods: Data for this study came from a cross-sectional web-based survey that examined factors associated with potential pre-exposure prophylaxis use among a convenience sample of adult Black cisgender women from 3 metropolitan areas in Texas. Each eligibility screener and associated survey entry was evaluated using 4 fraud deterrence features and 7 fraud detection benchmarks with corresponding decision rules. Results: A total of 5862 respondents provided consent and initiated the eligibility screener, of whom 2150 (36.68%) were ineligible for not meeting the inclusion criteria, and 131 (2.23%) completed less than 80% of the survey and were removed from further consideration. Other entries were removed for not passing level 1 fraud deterrent safeguards: duplicate entries with the same IP address (388/5862, 6.62%), same telephone number (69/5862, 1.18%), same email address (114/5862, 1.94%), and same telephone number and email address (17/5862, 0.29%). Of the remaining 2993 entries, 1652 entries were removed for not passing the first 2 items of the level 2 fraud detection benchmarks: screeners and surveys with latitude and longitude coordinates outside of the United States (347/2993, 11.59%) and survey completion time of less than 10 minutes (1305/2993, 43.6%). Of the remaining 1341 entries, 130 (9.69%) passed all 5 of the remaining level 2 data validation benchmarks, and 763 (56.89%) entries were removed due to passing less than 3. An additional 33.4% (423/1341) entries were removed after passing 4 of the 5 remaining validation benchmarks, being contacted to verify survey information, and not providing legitimate contact information or being unable to confirm personal information. The final enrolled sample in this online study consisted of 155 respondents who provided consent, were deemed eligible, and passed fraud deterrence features and fraud detection benchmarks. In this paper, we discuss the lessons learned and provide recommendations for leveraging available features in survey software programs to help deter bots and enhance fraud detection procedures beyond relying on survey software options. Conclusions: Effectively identifying fraudulent responses in online surveys is an ongoing challenge. The data validation approach used in this study establishes a robust protocol for identifying genuine participants, thereby contributing to the removal of false data from study findings. By sharing experiences and implementing thorough fraud deterrence and detection protocols, researchers can maintain data validity and contribute to best practices in web-based research. %M 40073396 %R 10.2196/59955 %U https://formative.jmir.org/2025/1/e59955 %U https://doi.org/10.2196/59955 %U http://www.ncbi.nlm.nih.gov/pubmed/40073396 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e63473 %T Effectiveness of Telehealth Versus In-Person Informed Consent: Randomized Study of Comprehension and Decision-Making %A Khairat,Saif %A Ottmar,Paige %A Chourasia,Prabal %A Obeid,Jihad %+ Carolina Health Informatics Program, University of North Carolina at Chapel Hill, Carrington Hall, Chapel Hill, NC, United States, 1 9198435413, saif@unc.edu %K telehealth %K informed %K consent %K comprehension %K decision-making %K cross-sectional study %K cross-section %K telemedicine %K eHealth %K health care services %K mHealth %K effectiveness %K informed consent %K statistical analysis %K feasibility %D 2025 %7 5.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Obtaining informed consent (IC) is vital for ethically and effectively recruiting participants in research projects. However, traditional in-person IC approaches encounter notable obstacles, such as geographic barriers, transportation expenses, and literacy challenges, which can lead to delays in enrollment and increased costs. Telehealth, especially teleconsent, offers a potential way to overcome these obstacles by facilitating the IC process in a digital setting. Nonetheless, there are concerns about whether teleconsent can achieve levels of understanding and involvement that are equivalent to those of in-person IC meetings. Objective: This study aims to evaluate comprehension and decision-making in participants undergoing teleconsent versus traditional in-person IC. We used validated assessments to determine whether teleconsent is a viable alternative that maintains participants’ understanding and decision-making abilities. Methods: A randomized comparative study design was used, recruiting potential participants for a parent study assessing patient experiences with patient portals. Participants were randomly assigned to 2 groups: teleconsent and in-person consent. The teleconsent group used Doxy.me software, allowing real-time interaction between researchers and participants while reviewing and electronically signing the IC documents. Recruitment involved using an institutional web-based platform to identify interested individuals, who were then contacted to assess eligibility and gather demographic information. The Decision-Making Control Instrument (DMCI) survey was used to assess the perceived voluntariness, trust, and decision self-efficacy. The Quality of Informed Consent (QuIC) was used to measure the comprehension level of the consent form. The validated Short Assessment of Health Literacy-English tool was used to measure participants' health literacy levels. Results: A total of 64 participants were enrolled in the study, with 32 in the teleconsent group and 32 in the in-person group. Of 64 participants, 32 (50%) were in the teleconsent group, 54 (84.4%) were females, 44 (68.7%) were aged 18-34 years, 50 (78.1%) were White, and 31 (48.4%) had a bachelor degree. The mean SAHL-E scores were different between the teleconsent and in-person groups (16.72, SD 1.88 vs 17.38, SD 0.95; P=.03). No significant differences were found between the average scores at baseline and follow-up for QuIC part A (P=.29), QuIC part B (P=.25), and DMCI (P=.38) within the teleconsent and in-person groups. Additionally, there were no significant differences in QuIC or DMCI between subgroups based on age, sex, and ethnicity. Conclusions: This study assessed the effectiveness of IC processes through telehealth compared to traditional in-person visits. Findings indicate that telehealth offers similar participant understanding and engagement while overcoming geographic and accessibility barriers. As health care adopts digital solutions, these results highlight telehealth’s potential to improve recruitment and retention in clinical research, suggesting that policy makers should integrate telehealth practices into regulations for better access and health outcomes. %M 40053795 %R 10.2196/63473 %U https://www.jmir.org/2025/1/e63473 %U https://doi.org/10.2196/63473 %U http://www.ncbi.nlm.nih.gov/pubmed/40053795 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e66821 %T Augmenting Insufficiently Accruing Oncology Clinical Trials Using Generative Models: Validation Study %A El Kababji,Samer %A Mitsakakis,Nicholas %A Jonker,Elizabeth %A Beltran-Bless,Ana-Alicia %A Pond,Gregory %A Vandermeer,Lisa %A Radhakrishnan,Dhenuka %A Mosquera,Lucy %A Paterson,Alexander %A Shepherd,Lois %A Chen,Bingshu %A Barlow,William %A Gralow,Julie %A Savard,Marie-France %A Fesl,Christian %A Hlauschek,Dominik %A Balic,Marija %A Rinnerthaler,Gabriel %A Greil,Richard %A Gnant,Michael %A Clemons,Mark %A El Emam,Khaled %+ School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, 75 Laurier Ave E, Ottawa, ON, K1N 6N5, Canada, 1 6137975412, kelemam@ehealthinformation.ca %K generative models %K study accrual %K recruitment %K clinical trial replication %K oncology %K validation %K simulated patient %K simulation %K retrospective %K dataset %K patient %K artificial intelligence %K machine learning %D 2025 %7 5.3.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Insufficient patient accrual is a major challenge in clinical trials and can result in underpowered studies, as well as exposing study participants to toxicity and additional costs, with limited scientific benefit. Real-world data can provide external controls, but insufficient accrual affects all arms of a study, not just controls. Studies that used generative models to simulate more patients were limited in the accrual scenarios considered, replicability criteria, number of generative models, and number of clinical trials evaluated. Objective: This study aimed to perform a comprehensive evaluation on the extent generative models can be used to simulate additional patients to compensate for insufficient accrual in clinical trials. Methods: We performed a retrospective analysis using 10 datasets from 9 fully accrued, completed, and published cancer trials. For each trial, we removed the latest recruited patients (from 10% to 50%), trained a generative model on the remaining patients, and simulated additional patients to replace the removed ones using the generative model to augment the available data. We then replicated the published analysis on this augmented dataset to determine if the findings remained the same. Four different generative models were evaluated: sequential synthesis with decision trees, Bayesian network, generative adversarial network, and a variational autoencoder. These generative models were compared to sampling with replacement (ie, bootstrap) as a simple alternative. Replication of the published analyses used 4 metrics: decision agreement, estimate agreement, standardized difference, and CI overlap. Results: Sequential synthesis performed well on the 4 replication metrics for the removal of up to 40% of the last recruited patients (decision agreement: 88% to 100% across datasets, estimate agreement: 100%, cannot reject standardized difference null hypothesis: 100%, and CI overlap: 0.8-0.92). Sampling with replacement was the next most effective approach, with decision agreement varying from 78% to 89% across all datasets. There was no evidence of a monotonic relationship in the estimated effect size with recruitment order across these studies. This suggests that patients recruited earlier in a trial were not systematically different than those recruited later, at least partially explaining why generative models trained on early data can effectively simulate patients recruited later in a trial. The fidelity of the generated data relative to the training data on the Hellinger distance was high in all cases. Conclusions: For an oncology study with insufficient accrual with as few as 60% of target recruitment, sequential synthesis can enable the simulation of the full dataset had the study continued accruing patients and can be an alternative to drawing conclusions from an underpowered study. These results provide evidence demonstrating the potential for generative models to rescue poorly accruing clinical trials, but additional studies are needed to confirm these findings and to generalize them for other diseases. %M 40053790 %R 10.2196/66821 %U https://www.jmir.org/2025/1/e66821 %U https://doi.org/10.2196/66821 %U http://www.ncbi.nlm.nih.gov/pubmed/40053790 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e59954 %T Supplementing Consent for a Prospective Longitudinal Cohort Study of Infants With Antenatal Opioid Exposure: Development and Assessment of a Digital Tool %A Newman,Jamie E %A Clarke,Leslie %A Athimuthu,Pranav %A Dhawan,Megan %A Owen,Sharon %A Beiersdorfer,Traci %A Parlberg,Lindsay M %A Bangdiwala,Ananta %A McMillan,Taya %A DeMauro,Sara B %A Lorch,Scott %A Peralta-Carcelen,Myriam %A Wilson-Costello,Deanne %A Ambalavanan,Namasivayam %A Merhar,Stephanie L %A Poindexter,Brenda %A Limperopoulos,Catherine %A Davis,Jonathan M %A Walsh,Michele %A Bann,Carla M %K informed consent digital tool %K avatars %K video-assisted consent %K MRI %K antenatal opioid exposure %K infant %K antenatal %K opioid exposure %K caregiver %K survey %K magnetic resonance imaging %K Outcomes of Babies With Opioid Exposure %D 2025 %7 4.3.2025 %9 %J JMIR Form Res %G English %X Background: The Outcomes of Babies With Opioid Exposure (OBOE) study is an observational cohort study examining the impact of antenatal opioid exposure on outcomes from birth to 2 years of age. COVID-19 social distancing measures presented challenges to research coordinators discussing the study at length with potential participants during the birth hospitalization, which impacted recruitment, particularly among caregivers of unexposed (control) infants. In response, the OBOE study developed a digital tool (consenter video) to supplement the informed consent process, make it more engaging, and foster greater identification with the research procedures among potential participants. Objective: We aim to examine knowledge of the study, experiences with the consent process, and perceptions of the consenter video among potential participants of the OBOE study. Methods: Analyses included 129 caregivers who were given the option to view the consenter video as a supplement to the consent process. Participants selected from 3 racially and ethnically diverse avatars to guide them through the 11-minute video with recorded voice-overs. After viewing the consenter video, participants completed a short survey to assess their knowledge of the study, experiences with the consent process, and perceptions of the tool, regardless of their decision to enroll in the main study. Chi-square tests were used to assess differences between caregivers of opioid-exposed and unexposed infants in survey responses and whether caregivers who selected avatars consistent with their racial or ethnic background were more likely to enroll in the study than those who selected avatars that were not consistent with their background. Results: Participants demonstrated good understanding of the information presented, with 95% (n=123) correctly identifying the study purpose and 88% (n=112) correctly indicating that their infant would not be exposed to radiation during the magnetic resonance imaging. Nearly all indicated they were provided “just the right amount of information” (n=123, 98%) and that they understood the consent information well enough to decide whether to enroll (n=125, 97%). Survey responses were similar between caregivers of opioid-exposed infants and unexposed infants on all items except the decision to enroll. Those in the opioid-exposed group were more likely to enroll in the main study compared to the unexposed group (n=49, 89% vs n=38, 51%; P<.001). Of 81 caregivers with known race or ethnicity, 35 (43%) chose avatars to guide them through the video that matched their background. Caregivers selecting avatars consistent with their racial or ethnic background were more likely to enroll in the main study (n=29, 83% vs n=43, 57%; P=.01). Conclusions: This interactive digital tool was helpful in informing prospective participants about the study. The consenter tool enhanced the informed consent process, reinforced why caregivers of unexposed infants were being approached, and was particularly helpful as a resource for families to understand magnetic resonance imaging procedures. Trial Registration: ClinicalTrials.gov NCT04149509; https://clinicaltrials.gov/study/NCT04149509 %R 10.2196/59954 %U https://formative.jmir.org/2025/1/e59954 %U https://doi.org/10.2196/59954 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 11 %N %P e56098 %T Assessing Health Information Seeking Behaviors Among Targeted Social Media Users Using an Infotainment Video About a Cancer Clinical Trial: Population-Based Descriptive Study %A Sommers,Jonathan %A Dizon,Don S %A Lewis,Mark A %A Stone,Erik %A Andreoli,Richard %A Henderson,Vida %K cancer clinical trials %K digital media %K social media %K infotainment %K recruitment %K education and awareness %K edutainment %K public engagement %K cancer %K lack of information %K social media %K health information %K medical awareness %K video series %K public audience %K low cost %K research participants %D 2025 %7 3.3.2025 %9 %J JMIR Cancer %G English %X Background: The lack of information and awareness about clinical trials, as well as misconceptions about them, are major barriers to cancer clinical trial participation. Digital and social media are dominant sources of health information and offer optimal opportunities to improve public medical awareness and education by providing accurate and trustworthy health information from reliable sources. Infotainment, material intended to both entertain and inform, is an effective strategy for engaging and educating audiences that can be easily disseminated using social media and may be a novel way to improve awareness of and recruitment in clinical trials. Objective: The purpose of this study was to evaluate whether an infotainment video promoting a clinical trial, disseminated using social media, could drive health information seeking behaviors. Methods: As part of a video series, we created an infotainment video focused on the promotion of a specific cancer clinical trial. We instituted a dissemination and marketing process on Facebook to measure video engagement and health information seeking behaviors among targeted audiences who expressed interest in breast cancer research and organizations. To evaluate video engagement, we measured reach, retention, outbound clicks, and outbound click-through rate. Frequencies and descriptive statistics were used to summarize each measure. Results: The video substantially increased health information seeking behavior by increasing viewership from 1 visitor one month prior to launch to 414 outbound clicks from the video to the clinical trial web page during the 21-day social media campaign period. Conclusions: Our study shows that digital and social media tools can be tailored for specific target audiences, are scalable, and can be disseminated at low cost, making it an accessible educational, recruitment, and retention strategy focused on improving the awareness of clinical trials. Trial Registration: ClinicalTrials.gov NCT03418961; https://clinicaltrials.gov/study/NCT03418961 %R 10.2196/56098 %U https://cancer.jmir.org/2025/1/e56098 %U https://doi.org/10.2196/56098 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 14 %N %P e67981 %T Increasing Participation and Completion Rates in Questionnaire Surveys of Primary Care Patients: Cluster-Randomized Study %A Sebo,Paul %A Tudrej,Benoit %A Bernard,Augustin %A Delaunay,Bruno %A Dupuy,Alexandra %A Malavergne,Claire %A Maisonneuve,Hubert %+ , University Institute for Primary Care (IuMFE), University of Geneva, Rue Michel-Servet 1, Geneva, 1211, Switzerland, 41 22 379 50 61, paulsebo@hotmail.com %K completion rate %K missing data %K mixed mode %K web-based %K participation rate %K primary care %K questionnaire %K QR code %K tablet %K survey %K primary care patients %K randomized study %D 2025 %7 25.2.2025 %9 Original Paper %J Interact J Med Res %G English %X Background: Participation and completion rates in questionnaire-based surveys are often low. Objective: This study aims to assess participation and completion rates for a survey using paper and mixed mode questionnaires with patients recruited by research assistants in primary care waiting rooms. Methods: This cluster-randomized study, conducted in 2023 in France, involved 974 patients from 39 practices randomized into 4 groups: “paper with incentive” (n=251), “paper without incentive” (n=368), “mixed mode with tablet” (n=187), and “mixed mode with QR code” (n=168). Analyses compared the combined paper group with the 2 mixed mode groups and the “paper with incentive” and “paper without incentive” groups. Logistic regressions were used to analyze participation and completion rates. Results: Of the 974 patients recruited, 822 (women: 536/821, 65.3%; median age 52, IQR 37-68 years) agreed to participate (participation rate=84.4%), with no significant differences between groups. Overall, 806 patients (98.1%) answered all 48 questions. Completion rates were highest in the combined paper group (99.8%) compared to mixed mode groups (96.8% for paper or tablet, 93.3% for paper or QR code; P<.001). There was no significant difference in completion rates between the “paper with incentive” and “paper without incentive” groups (100% vs 99.7%). Conclusions: Recruiting patients in waiting rooms with research assistants resulted in high participation and completion rates across all groups. Mixed mode options did not enhance participation or completion rates but may offer logistical advantages. Future research should explore incentives and mixed-mode strategies in diverse settings. %M 39999441 %R 10.2196/67981 %U https://www.i-jmr.org/2025/1/e67981 %U https://doi.org/10.2196/67981 %U http://www.ncbi.nlm.nih.gov/pubmed/39999441 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e55082 %T Online-Based Recruitment Methods for Community-Dwelling Older Adults: Scoping Review and Lessons Learned From the PLAN Trial %A Min,Deborah %A Yun,Ji-Young %A Parslow,Chad %A Jajodia,Anushka %A Han,Hae-Ra %+ School of Nursing, Johns Hopkins University, 525 North Wolfe Street, Baltimore, MD, 21205, United States, 1 14106142669, hhan3@jhu.edu %K older adults %K online %K online recruitment %K community-dwelling %K strategies %K America %K Americans %K technology adoption %K digital technologies %K COVID-19 %K pandemic %K digital health %K dementia %K caregivers %K healthcare system %K community health workers %K consultants %K mobile phone %D 2025 %7 25.2.2025 %9 Review %J J Med Internet Res %G English %X Background: Despite rapid technological advancement and a considerably aging US population, there remains a gap in the literature pertaining to online-based recruitment strategies for older adults. Objective: This study aimed to describe the lessons learned from the authors’ experience of recruiting a sample for PLAN (Preparing successful aging through dementia Literacy education And Navigation), an ongoing, community-based randomized controlled trial designed to promote the transition of community-dwelling Korean American older adults with probable dementia and their caregivers into the health care system. The authors also present online-based recruitment strategies focused on older adults reported in relevant published studies to compare with their experiences. Methods: Data sources included PLAN recruitment tracking files, study team meeting minutes, and interviews with community consultants. We also conducted a scoping review of published studies, searching PubMed in July 2021, and updated our search in September 2023. Eligibility criteria included (1) focus on older adults aged more than 65 years, (2) sample recruited from a community setting, and (3) inclusion and description of online-based recruitment strategies. Exclusion criteria (1) did not focus on adults older than 65 years in a community setting, (2) did not include or describe online-based recruitment strategies, or (3) used online-based methods but not for the purpose of recruitment. The review followed the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews). Information was extracted using a data charting table and synthesized by conducting a thematic analysis. Results: In total, 8 articles were included in the scoping review and primarily addressed health promotion and recruitment strategy evaluation. When compared with PLAN data sources, five key themes emerged as relevant to the online-based recruitment of community-dwelling older adults: (1) unfamiliarity with technology—limited digital literacy, (2) differences in internet access and use across older age groups, (3) providing technological support to promote recruitment, (4) successful and unsuccessful recruitment using social media, and (5) other diverse online-based methods of recruitment. In particular, direct quotes from multiple sources for the PLAN trial revealed technological challenges that were common among immigrant older adults as the study team used various online-based recruitment activities. Conclusions: The literature was limited in the discussion of online-based recruitment among older participants. Data sources revealed the digital divide and limited digital literacy, particularly among non–English-speaking immigrant older adults and their caregivers. The usefulness of online-based recruitment of older adults is uncertain due, in large part, to limited sociodemographic diversity noted in the samples recruited in the included studies. Future research should explore the role of race and ethnicity and other characteristics, such as socioeconomic status, sex, education, access to technology, and digital literacy, in relation to online-based recruitment for adequate representation of diverse older adults in research. Trial Registration: ClinicalTrials.gov NCT03909347; https://clinicaltrials.gov/study/NCT03909347 %M 39998873 %R 10.2196/55082 %U https://www.jmir.org/2025/1/e55082 %U https://doi.org/10.2196/55082 %U http://www.ncbi.nlm.nih.gov/pubmed/39998873 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e66718 %T Improving the User Interface and Guiding the Development of Effective Training Material for a Clinical Research Recruitment and Retention Dashboard: Usability Testing Study %A Gardner,Leah Leslie %A Raeisian Parvari,Pezhman %A Seidman,Mark %A Holden,Richard J %A Fowler,Nicole R %A Zarzaur,Ben L %A Summanwar,Diana %A Barboi,Cristina %A Boustani,Malaz %K recruitment strategies %K clinical research %K research subject recruitment %K agile science %K agile implementation %K human-computer interaction %D 2025 %7 24.2.2025 %9 %J JMIR Form Res %G English %X Background: Participant recruitment and retention are critical to the success of clinical trials, yet challenges such as low enrollment rates and high attrition remain ongoing obstacles. RecruitGPS is a scalable dashboard with integrated control charts to address these issues by providing real-time data monitoring and analysis, enabling researchers to better track and improve recruitment and retention. Objective: This study aims to identify the challenges and inefficiencies users encounter when interacting with the RecruitGPS dashboard. By identifying these issues, the study aims to inform strategies for improving the dashboard’s user interface and create targeted, effective instructional materials that address user needs. Methods: Twelve clinical researchers from the Midwest region of the United States provided feedback through a 10-minute, video-recorded usability test session, during which participants were instructed to explore the various tabs of the dashboard, identify challenges, and note features that worked well while thinking aloud. Following the video session, participants took a survey on which they answered System Usability Scale (SUS) questions, ease of navigation questions, and a Net Promoter Score (NPS) question. Results: A quantitative analysis of survey responses revealed an average SUS score of 61.46 (SD 23.80; median 66.25) points, indicating a need for improvement in the user interface. The NPS was 8, with 4 of 12 (33%) respondents classified as promoters and 3 of 12 (25%) as detractors, indicating a slightly positive satisfaction. When participants compared RecruitGPS to other recruitment and study management tools they had used, 8 of 12 (67%) of participants rated RecruitGPS as better or much better. Only 1 of 12 (8%) participants rated RecruitGPS as worse but not much worse. A qualitative analysis of participants’ interactions with the dashboard diagnosed a confusing part of the dashboard that could be eliminated or made optional and provided valuable insight for the development of instructional videos and documentation. Participants liked the dashboard’s data visualization capabilities, including intuitive graphs and trend tracking; progress indicators, such as color-coded status indicators and comparison metrics; and the overall dashboard’s layout and design, which consolidated relevant data on a single page. Users also valued the accuracy and real-time updates of data, especially the integration with external sources like Research Electronic Data Capture (REDCap). Conclusions: RecruitGPS demonstrates significant potential to improve the efficiency of clinical trials by providing researchers with real-time insights into participant recruitment and retention. This study offers valuable recommendations for targeted refinements to enhance the user experience and maximize the dashboard’s effectiveness. Additionally, it highlights navigation challenges that can be addressed through the development of clear and focused instructional videos. %R 10.2196/66718 %U https://formative.jmir.org/2025/1/e66718 %U https://doi.org/10.2196/66718 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e66681 %T Effect on Response Rates of Adding a QR Code to Patient Consent Forms for Qualitative Research in Patients With Cancer: Pilot Randomized Controlled Trial %A Wyse,Rebecca %A Forbes,Erin %A Norton,Grace %A Viana Da Silva,Priscilla %A Fakes,Kristy %A Johnston,Sally Ann %A Smith,Stephen R %A Zucca,Alison %+ School of Medicine and Public Health, The University of Newcastle, University Dr, Callaghan, NSW, 2308, Australia, 61 02 40420272, rebecca.wyse@health.nsw.gov.au %K QR code %K qualitative research %K cancer %K randomized controlled trial %K RCT %K patient recruitment %K consent forms %K response rates %D 2025 %7 21.2.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: The successful conduct of health and medical research is largely dependent on participant recruitment. Effective, yet inexpensive methods of increasing response rates for all types of research are required. QR codes are now commonplace, and despite having been extensively used to recruit study participants, a search of the literature failed to reveal any randomized trial investigating the effect of adding a QR code on qualitative research response rates. Objective: This study aimed to collect data on rates of response, consent, and decline among patients with cancer, and the average time taken to respond following randomization to receive either a QR code or no QR code on the patient consent form for a qualitative research study. Methods: This was a pilot randomized controlled trial (RCT) embedded within a qualitative research study. In total, 40 eligible patients received a recruitment pack for the qualitative study, which included an information statement, a consent form, and an addressed, stamped envelope to return their consent form. Patients were randomized 1:1 to the control (standard recruitment pack only) or intervention group (standard recruitment pack including modified consent form with a QR code). Results: In total, 27 out of 40 patients (age: mean 63.0, SD 14.8 years; 45% female) responded to the consent form. A lower proportion of the QR code group (60%) responded (odd ratio [OR] 0.57, 95% CI 0.14-2.37; P=.44), compared to 75% of the standard recruitment group. However, a higher proportion of the QR group (35%) consented (OR 1.84, 95% CI 0.41-8.29; P=.43), compared to the standard recruitment group (20%). A lower proportion of the QR group (25%) declined (OR 0.34, 95% CI 0.09-1.38; P=.13) relative to the standard recruitment group (55%). The mean response time of the QR code group was 16 days (rate ratio [RR] 0.79, 95% CI 0.47-1.35; P=.39) compared to 19 days for the standard recruitment group. None of the age-adjusted analyses were statistically significant. Conclusions: This underpowered pilot study did not find any evidence that offering an option to respond through a QR code on a patient consent form for a qualitative study increased the overall patient response rate (combined rate of consent and decline). However, there was a nonsignificant trend, indicating that more patients who received the QR code consented compared to those who did not receive the QR code. This study provides useful preliminary data on the potential impact of QR codes on patient response rates to invitations to participate in qualitative research and can be used to inform fully powered RCTs. Trial Registration: OSF Registries 10.17605/OSF.IO/PJ25X; https://doi.org/10.17605/OSF.IO/PJ25X %M 39983108 %R 10.2196/66681 %U https://formative.jmir.org/2025/1/e66681 %U https://doi.org/10.2196/66681 %U http://www.ncbi.nlm.nih.gov/pubmed/39983108 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e55316 %T Snowball Group Usability Testing for Rapid and Iterative Multisite Tool Development: Method Development Study %A Dauber-Decker,Katherine L %A Feldstein,David %A Hess,Rachel %A Mann,Devin %A Kim,Eun Ji %A Gautam-Goyal,Pranisha %A Solomon,Jeffrey %A Khan,Sundas %A Malik,Fatima %A Xu,Lynn %A Huffman,Ainsley %A Smith,Paul D %A Halm,Wendy %A Yuroff,Alice %A Richardson,Safiya %K clinical decision support %K CDS %K decision aid %K clinical aid %K cough %K sore throat %K strep pharyngitis %K snowball group usability testing %K snowball group %K usability testing %D 2025 %7 18.2.2025 %9 %J JMIR Form Res %G English %X Background: Usability testing is valuable for assessing a new tool or system’s usefulness and ease-of-use. Several established methods of usability testing exist, including think-aloud testing. Although usability testing has been shown to be crucial for successful clinical decision support (CDS) tool development, it is often difficult to conduct across multisite development projects due to its time- and labor-intensiveness, cost, and the skills required to conduct the testing. Objective: Our objective was to develop a new method of usability testing that would enable efficient acquisition and dissemination of results among multiple sites. We sought to address the existing barriers to successfully completing usability testing during CDS tool development. Methods: We combined individual think-aloud testing and focus groups into one session and performed sessions serially across 4 sites (snowball group usability testing) to assess the usability of two CDS tools designed for use by nurses in primary and urgent care settings. We recorded each session and took notes in a standardized format. Each site shared feedback from their individual sessions with the other sites in the study so that they could incorporate that feedback into their tools prior to their own testing sessions. Results: The group testing and snowballing components of our new usability testing method proved to be highly beneficial. We identified 3 main benefits of snowball group usability testing. First, by interviewing several participants in a single session rather than individuals over the course of weeks, each site was able to quickly obtain their usability feedback. Second, combining the individualized think-aloud component with a focus group component in the same session helped study teams to more easily notice similarities in feedback among participants and to discuss and act upon suggestions efficiently. Third, conducting usability testing in series across sites allowed study teams to incorporate feedback based on previous sites’ sessions prior to conducting their own testing. Conclusions: Snowball group usability testing provides an efficient method of obtaining multisite feedback on newly developed tools and systems, while addressing barriers typically associated with traditional usability testing methods. This method can be applied to test a wide variety of tools, including CDS tools, prior to launch so that they can be efficiently optimized. Trial Registration: Clinicaltrials.gov NCT04255303; https://clinicaltrials.gov/study/NCT04255303 %R 10.2196/55316 %U https://formative.jmir.org/2025/1/e55316 %U https://doi.org/10.2196/55316 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e58451 %T A 4-Site Public Deliberation Project on the Acceptability of Youth Self-Consent in Biomedical HIV Prevention Trials: Assessment of Facilitator Fidelity to Key Principles %A Draucker,Claire Burke %A Carrión,Andrés %A Ott,Mary A %A Hicks,Ariel I %A Knopf,Amelia %+ Indiana University, 111 Middle Drive, Indianapolis, IN, 46202, United States, 1 317 274 4139, cdraucke@iu.edu %K public deliberation %K deliberative democracy %K bioethics %K ethical conflict %K biomedical %K HIV prevention %K HIV research %K group facilitation %K fidelity assessment %K content analysis %D 2025 %7 13.2.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Public deliberation is an approach used to engage persons with diverse perspectives in discussions and decision-making about issues affecting the public that are controversial or value laden. Because experts have identified the need to evaluate facilitator performance, our research team developed a framework to assess the fidelity of facilitator remarks to key principles of public deliberation. Objective: This report describes how the framework was used to assess facilitator fidelity in a 4-site public deliberation project on the acceptability of minor self-consent in biomedical HIV prevention research. Methods: A total of 88 individuals participated in 4 deliberation sessions held in 4 cities throughout the United States. The sessions, facilitated by 18 team members, were recorded and transcribed verbatim. Facilitator remarks were highlighted, and predetermined coding rules were used to code the remarks to 1 of 6 principles of quality deliberations. A variety of display tables were used to organize the codes and calculate the number of facilitator remarks that were consistent or inconsistent with each principle during each session across all sites. A content analysis was conducted on the remarks to describe how facilitator remarks aligned or failed to align with each principle. Results: In total, 735 remarks were coded to one of the principles; 516 (70.2%) were coded as consistent with a principle, and 219 (29.8%) were coded as inconsistent. A total of 185 remarks were coded to the principle of equal participation (n=138, 74.6% as consistent; n=185, 25.4% as inconsistent), 158 were coded to expression of diverse opinions (n=110, 69.6% as consistent; n=48, 30.4% as inconsistent), 27 were coded to respect for others (n=27, 100% as consistent), 24 were coded to adoption of a societal perspective (n=11, 46% as consistent; n=13, 54% as inconsistent), 99 were coded to reasoned justification of ideas (n=81, 82% as consistent; n=18, 18% as inconsistent), and 242 were coded to compromise or movement toward consensus (n=149, 61.6% as consistent; n=93, 38.4% as inconsistent). Therefore, the counts provided affirmation that most of the facilitator remarks were aligned with the principles of deliberation, suggesting good facilitator fidelity. By considering how the remarks aligned or failed to align with the principles, areas where facilitator fidelity can be strengthened were identified. The results indicated that facilitators should focus more on encouraging quieter members to participate, refraining from expressing personal opinions, promoting the adoption of a societal perspective and reasoned justification of opinions, and inviting deliberants to articulate their areas of common ground. Conclusions: The results provide an example of how a framework for assessing facilitator fidelity was used in a 4-site deliberation project. The framework will be refined to better address issues related to balancing personal and public perspectives, managing plurality, and mitigating social inequalities. %M 39946717 %R 10.2196/58451 %U https://formative.jmir.org/2025/1/e58451 %U https://doi.org/10.2196/58451 %U http://www.ncbi.nlm.nih.gov/pubmed/39946717 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e58628 %T Technological Adjuncts to Streamline Patient Recruitment, Informed Consent, and Data Management Processes in Clinical Research: Observational Study %A Koh,Jodie %A Caron,Stacey %A Watters,Amber N %A Vaidyanathan,Mahesh %A Melnick,David %A Santi,Alyssa %A Hudson,Kenneth %A Arguelles,Catherine %A Mathur,Priyanka %A Etemadi,Mozziyar %+ Kellogg School of Management, Northwestern University, 2211 Campus Drive, Evanston, IL, 60208, United States, 1 847 491 3300, jodie.koh@kellogg.northwestern.edu %K digital health %K patient recruitment %K consent %K technological adjuncts %K data management %K clinical research processes %K automation %K digital platforms %K data warehouse %K patient data %K imaging data %K pregnancy %K clinical research methods %D 2025 %7 29.1.2025 %9 Original Paper %J JMIR Form Res %G English %X Background: Patient recruitment and data management are laborious, resource-intensive aspects of clinical research that often dictate whether the successful completion of studies is possible. Technological advances present opportunities for streamlining these processes, thus improving completion rates for clinical research studies. Objective: This paper aims to demonstrate how technological adjuncts can enhance clinical research processes via automation and digital integration. Methods: Using one clinical research study as an example, we highlighted the use of technological adjuncts to automate and streamline research processes across various digital platforms, including a centralized database of electronic medical records (enterprise data warehouse [EDW]); a clinical research data management tool (REDCap [Research Electronic Data Capture]); and a locally managed, Health Insurance Portability and Accountability Act–compliant server. Eligible participants were identified through automated queries in the EDW, after which they received personalized email invitations with digital consent forms. After digital consent, patient data were transferred to a single Health Insurance Portability and Accountability Act–compliant server where each participant was assigned a unique QR code to facilitate data collection and integration. After the research study visit, data obtained were associated with existing electronic medical record data for each participant via a QR code system that collated participant consent, imaging data, and associated clinical data according to a unique examination ID. Results: Over a 19-month period, automated EDW queries identified 20,988 eligible patients, and 10,582 patients received personalized email invitations. In total, 1000 (9.45%) patients signed consents to participate in the study. Of the consented patients, 549 unique patients completed 779 study visits; some patients consented to the study at more than 1 time period during their pregnancy. Conclusions: Technological adjuncts in clinical research decrease human labor while increasing participant reach and minimizing disruptions to clinic operations. Automating portions of the clinical research process benefits clinical research efforts by expanding and optimizing participant reach while reducing the limitations of labor and time in completing research studies. %M 39879093 %R 10.2196/58628 %U https://formative.jmir.org/2025/1/e58628 %U https://doi.org/10.2196/58628 %U http://www.ncbi.nlm.nih.gov/pubmed/39879093 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e66384 %T Detecting Deception and Ensuring Data Integrity in a Nationwide mHealth Randomized Controlled Trial: Factorial Design Survey Study %A Kezbers,Krista M %A Robertson,Michael C %A Hébert,Emily T %A Montgomery,Audrey %A Businelle,Michael S %+ Tobacco Settlement Endowment Trust Health Promotion Research Center, Stephenson Cancer Center, University of Oklahoma Health Sciences, 655 Research Parkway, Suite 400, Oklahoma City, OK, 73104, United States, 1 4052718001 ext 45042, krista-kezbers@ouhsc.edu %K ecological momentary assessment %K enrollment %K fraud %K mHealth %K randomized controlled trial %K recruitment %K deception %K data integrity %K behavior %K social %K RCT %K factorial design %K mobile phone %D 2025 %7 28.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Social behavioral research studies have increasingly shifted to remote recruitment and enrollment procedures. This shifting landscape necessitates evolving best practices to help mitigate the negative impacts of deceptive attempts (eg, fake profiles and bots) at enrolling in behavioral research. Objective: This study aimed to develop and implement robust deception detection procedures during the enrollment period of a remotely conducted randomized controlled trial. Methods: A 32-group (2×2×2×2×2) factorial design study was conducted from November 2021 to September 2022 to identify mobile health (mHealth) survey design features associated with the highest completion rates of smartphone-based ecological momentary assessments (n=485). Participants were required to be at least 18 years old, live in the United States, and own an Android smartphone that was compatible with the Insight app that was used in the study. Recruitment was conducted remotely through Facebook advertisements, a 5-minute REDCap (Research Electronic Data Capture) prescreener, and a screening and enrollment phone call. The research team created and implemented a 12-step checklist (eg, address verification and texting a copy of picture identification) to identify and prevent potentially deceptive attempts to enroll in the study. Descriptive statistics were calculated to understand the prevalence of various types of deceptive attempts at study enrollment. Results: Facebook advertisements resulted in 5236 initiations of the REDCap prescreener. A digital deception detection procedure was implemented for those who were deemed pre-eligible (n=1928). This procedure resulted in 26% (501/1928) of prescreeners being flagged as potentially deceptive. Completing multiple prescreeners (301/501, 60.1%) and providing invalid addresses (156/501, 31.1%) were the most common reasons prescreeners were flagged. An additional 1% (18/1928) of prescreeners were flagged as potentially deceptive during the subsequent study screening and enrollment phone call. Reasons for exclusion at the screening and enrollment phone call level included having an invalid phone type (6/18, 33.3%), completing multiple prescreeners (6/18, 33.3%), and providing an invalid address (5/18, 27.7%). This resulted in 1409 individuals being eligible after all deception checks were completed. Postenrollment social security number checks revealed that 3 (0.6%) fully enrolled participants out of 485 provided erroneous social security numbers during the screening process. Conclusions: Implementation of a deception detection procedure in a remotely conducted randomized controlled trial resulted in a substantial proportion of cases being flagged as potentially engaging in deceptive attempts at study enrollment. The results of the deception detection procedures in this study confirmed the need for vigilance in conducting remote behavioral research in order to maintain data integrity. Implementing systematic deception detection procedures may support study administration, data quality, and participant safety in remotely conducted behavioral research. Trial Registration: ClinicalTrials.gov NCT05194228; https://clinicaltrials.gov/study/NCT05194228 %M 39874573 %R 10.2196/66384 %U https://www.jmir.org/2025/1/e66384 %U https://doi.org/10.2196/66384 %U http://www.ncbi.nlm.nih.gov/pubmed/39874573 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e52043 %T Parental Mental Health and Child Maltreatment in the COVID-19 Pandemic: Importance of Sampling in a Quantitative Statistical Study %A Engelke,Lara %A Calvano,Claudia %A Pohl,Steffi %A Winter,Sibylle Maria %A Renneberg,Babette %+ Clinical Psychology and Psychotherapy, Department of Education and Psychology, Freie Universität Berlin, Habelschwerdter Allee 45, Berlin, 14195, Germany, 49 30 838 76522, engelke.l@fu-berlin.de %K COVID-19 %K parental stress %K parental mental health %K child maltreatment %K data collection methods %K web-based surveys %K convenience sample %K sampling methods %D 2025 %7 24.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Results on parental burden during the COVID-19 pandemic are predominantly available from nonrepresentative samples. Although sample selection can significantly influence results, the effects of sampling strategies have been largely underexplored. Objective: This study aimed to investigate how sampling strategy may impact study results. Specifically, we aimed to (1) investigate if outcomes on parental health and child maltreatment during the COVID-19 pandemic from a convenience sample differ from those of a specific representative sample and (2) investigate reasons for differences in the results. Methods: In 2020, we simultaneously conducted 2 studies: (1) a web-based survey using a convenience sample of 4967 parents of underage children, primarily recruited via social media, and (2) a study using a quota sample representative of the German adult population with underage children (N=1024), recruited through a combination of telephone interviews and computer-assisted web interviews. In both studies, the same questionnaire was used. To evaluate the impact of sampling, we compared the results on outcomes (parental stress, subjective health, parental mental health, general stress, pandemic-related stress, and the occurrence of child maltreatment) between the 2 samples. To explain differences in the results between the 2 studies, we controlled for sociodemographic data, parent-related risk factors, and COVID-19–related experiences. Results: Compared to parents from the quota sample, parents from the convenience sample reported significantly more parental stress (η2=0.024); decreased subjective health (η2=0.016); more anxiety and depression symptoms (η2=0.055); more general stress (η2=0.044); more occurrences of verbal emotional abuse (VEA; φ=0.12), witnessing domestic violence (WDV; φ=0.13), nonverbal emotional abuse (NEA; φ=0.03), physical abuse (φ=0.10), and emotional neglect (φ=0.06); and an increase of child maltreatment (VEA: exp(B)=2.95; WDV: exp(B)=3.19; NEA: exp(B)=1.65). Sociodemographic data, parent-related risk factors, and COVID-19–related experiences explained the differences in parental stress (remaining difference between samples after controlling for covariates: η2=0.002) and subjective health (remaining difference between samples after controlling for covariates: η2=0.004) and partially explained differences in parental mental health (remaining: η2=0.016), general stress (remaining: η2=0.014), and child maltreatment (remaining: VEA: exp(B)=2.05 and WDV: exp(B)=2.02) between the 2 samples. The covariates could not explain the difference in NEA (exp(B)=1.70). We discuss further factors that may explain the unexplained differences. Conclusions: Results of studies can be heavily impacted by the sampling strategy. Scientists are advised to collect relevant explaining variables (covariates) that are possibly related to sample selection and the outcome under investigation. This approach enables us to identify the individuals to whom the results apply and to combine findings from different studies. Furthermore, if data on the distribution of these explanatory variables in the population are available, it becomes possible to adjust for sample selection bias. %M 39854726 %R 10.2196/52043 %U https://www.jmir.org/2025/1/e52043 %U https://doi.org/10.2196/52043 %U http://www.ncbi.nlm.nih.gov/pubmed/39854726 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e63349 %T Factors Influencing Informed Consent Preferences in Digital Health Research: Survey Study of Prospective Participants %A McInnis,Brian J %A Pindus,Ramona %A Kareem,Daniah %A Vital,Daniela G %A Hekler,Eric B %A Nebeker,Camille %+ Herbert Wertheim School of Public Health and Human Longevity Science, University of California San Diego, 9500 Gilman Dr MC 0811, La Jolla, CA, 92093-0811, United States, 1 6195182875, nebeker@health.ucsd.edu %K digital health %K research ethics %K informed consent %K readability %K health literacy %K human-centered approach %K consent communication %K text snippet %K qualitative analysis %K effectiveness %K health information %K health informatics %D 2025 %7 23.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Readability is important to consider when developing informed consent communications for prospective research participants, but not the most important consideration. Other factors to consider relate to learning preferences and literacy needs of people recruited to participate in research, as these factors can influence understanding of consent communications. To promote understanding among prospective participants, researchers should take a human-centered approach to develop consent communications. Objective: This study aims to explore how factors related to readability, topic, and participant demographic characteristics play into preferences for digital health research consent material. These factors are important to consider as not attending to some details that matter to a specific subgroup of prospective participants may systematically exclude people from research. Methods: People eligible to participate in a digital health study were recruited to review 31 paragraph length sections of a consent form, referred to as “text snippets,” for an existing institutional review board–approved digital health study. Participants (N=79) were surveyed and asked to choose between 2 variations of the text snippets, either indicating a preference for the institutional review board–approved original or a version that was modified to improve readability. Results: A slim majority of participants provided feedback about the snippets (n=44; 55%). Our qualitative analysis of the feedback found that participants preferred shorter snippets, in general, but the snippets also elicited new questions not addressed by the original consent material. This observation is supported by our quantitative analysis, which found that when the character length of the original was longer, participants were less likely to prefer the original (P<.001) and more likely to prefer the modified text by a factor of 1.20 times (P=.04), and particularly for snippets explaining study risks (P=.03). Our analysis also found significant differences in participant demographic characteristics. For example, older participants tended to prefer the original more than younger participants, by a factor of 1.95 times (P=.004). The results present illustrative examples of how factors related to sex, age, physical activity, and ethnicity all play into preference for consent communication. Conclusions: The findings point toward new ways of evaluating informed consent communication: (1) for responsiveness to specific prospective participant populations, and (2) effectiveness at eliciting informed questions from people considering participation. We discuss how creating partnerships with prospective participants to prototype informed consent materials, specifically study procedures and risks, can be a way to identify those details before launching a study. Furthermore, future research should go beyond “readability” to explore alternate measures of evaluating consent materials, such as the likelihood that the consent material and communication procedures will elicit “informed questions” for the research team. %M 39847412 %R 10.2196/63349 %U https://www.jmir.org/2025/1/e63349 %U https://doi.org/10.2196/63349 %U http://www.ncbi.nlm.nih.gov/pubmed/39847412 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 9 %N %P e59291 %T Recruitment Challenges and Strategies in a Technology-Based Intervention for Dementia Caregivers: Descriptive Study %A Ko,Eunjung %A Gao,Ye %A Wang,Peng %A Wijayasingha,Lahiru %A Wright,Kathy D %A Gordon,Kristina C %A Wang,Hongning %A Stankovic,John A %A Rose,Karen M %K recruitment challenges and strategies %K technology-based intervention %K dementia caregivers %K dementia %K mobile phone %K Alzheimer disease %K smart health %D 2025 %7 17.1.2025 %9 %J JMIR Form Res %G English %X Background: Researchers have encountered challenges in recruiting unpaid caregivers of people living with Alzheimer disease and related dementias for intervention studies. However, little is known about the reasons for nonparticipation in in-home smart health interventions in community-based settings. Objective: This study aimed to (1) assess recruitment rates in a smart health technology intervention for caregivers of people living with Alzheimer disease and related dementias and reasons for nonparticipation among them and (2) discuss lessons learned from recruitment challenges and strategies to improve recruitment. Methods: The smart health intervention was a 4-month, single-arm trial designed to evaluate an in-home, technology-based intervention that monitors stressful moments for caregiving dyads through acoustic signals and to provide the caregivers with real-time stress management strategies. The recruitment involved two main methods: on-site engagement by a recruiter from a memory clinic and social media advertising. Caregivers were screened for eligibility by phone between January 2021 and September 2023. The recruitment rates, reasons for nonparticipation, and participant demographics were analyzed using descriptive statistics. Results: Of 201 caregivers contacted, 11 were enrolled in this study. Eighty-two caregivers did not return the screening call, and others did not participate due to privacy concerns (n=30), lack of interest (n=29), and burdensome study procedures (n=26). Our recruitment strategies included addressing privacy concerns, visualizing collected data through a dashboard, boosting social media presence, increasing the recruitment budget, updating advertisements, and preparing and deploying additional study devices. Conclusions: This study highlighted barriers to participation in the smart health intervention. Despite several recruitment strategies, enrollment rates remained below expectations. These findings underscore the need for future research to explore alternative methods for increasing the recruitment of informal dementia caregivers in technology-based intervention studies. Trial Registration: ClinicalTrials.gov NCT04536701; https://clinicaltrials.gov/study/NCT04536701 International Registered Report Identifier (IRRID): RR2-10.1111/jan.14714 %R 10.2196/59291 %U https://formative.jmir.org/2025/1/e59291 %U https://doi.org/10.2196/59291 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e52385 %T A Digital Tool for Clinical Evidence–Driven Guideline Development by Studying Properties of Trial Eligible and Ineligible Populations: Development and Usability Study %A Mumtaz,Shahzad %A McMinn,Megan %A Cole,Christian %A Gao,Chuang %A Hall,Christopher %A Guignard-Duff,Magalie %A Huang,Huayi %A McAllister,David A %A Morales,Daniel R %A Jefferson,Emily %A Guthrie,Bruce %+ Division of Population Health and Genomics, School of Medicine, University of Dundee, The Health Informatics Centre, Ninewells Hospital and Medical School, Dundee, DD2 1FD, United Kingdom, 44 01382383943, e.r.jefferson@dundee.ac.uk %K multimorbidity %K clinical practice guideline %K gout %K Trusted Research Environment %K National Institute for Health and Care Excellence %K Scottish Intercollegiate Guidelines Network %K clinical practice %K development %K efficacy %K validity %K epidemiological data %K epidemiology %K epidemiological %K digital tool %K tool %K age %K gender %K ethnicity %K mortality %K feedback %K availability %D 2025 %7 16.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Clinical guideline development preferentially relies on evidence from randomized controlled trials (RCTs). RCTs are gold-standard methods to evaluate the efficacy of treatments with the highest internal validity but limited external validity, in the sense that their findings may not always be applicable to or generalizable to clinical populations or population characteristics. The external validity of RCTs for the clinical population is constrained by the lack of tailored epidemiological data analysis designed for this purpose due to data governance, consistency of disease or condition definitions, and reduplicated effort in analysis code. Objective: This study aims to develop a digital tool that characterizes the overall population and differences between clinical trial eligible and ineligible populations from the clinical populations of a disease or condition regarding demography (eg, age, gender, ethnicity), comorbidity, coprescription, hospitalization, and mortality. Currently, the process is complex, onerous, and time-consuming, whereas a real-time tool may be used to rapidly inform a guideline developer’s judgment about the applicability of evidence. Methods: The National Institute for Health and Care Excellence—particularly the gout guideline development group—and the Scottish Intercollegiate Guidelines Network guideline developers were consulted to gather their requirements and evidential data needs when developing guidelines. An R Shiny (R Foundation for Statistical Computing) tool was designed and developed using electronic primary health care data linked with hospitalization and mortality data built upon an optimized data architecture. Disclosure control mechanisms were built into the tool to ensure data confidentiality. The tool was deployed within a Trusted Research Environment, allowing only trusted preapproved researchers to conduct analysis. Results: The tool supports 128 chronic health conditions as index conditions and 161 conditions as comorbidities (33 in addition to the 128 index conditions). It enables 2 types of analyses via the graphic interface: overall population and stratified by user-defined eligibility criteria. The analyses produce an overview of statistical tables (eg, age, gender) of the index condition population and, within the overview groupings, produce details on, for example, electronic frailty index, comorbidities, and coprescriptions. The disclosure control mechanism is integral to the tool, limiting tabular counts to meet local governance needs. An exemplary result for gout as an index condition is presented to demonstrate the tool’s functionality. Guideline developers from the National Institute for Health and Care Excellence and the Scottish Intercollegiate Guidelines Network provided positive feedback on the tool. Conclusions: The tool is a proof-of-concept, and the user feedback has demonstrated that this is a step toward computer-interpretable guideline development. Using the digital tool can potentially improve evidence-driven guideline development through the availability of real-world data in real time. %M 39819848 %R 10.2196/52385 %U https://www.jmir.org/2025/1/e52385 %U https://doi.org/10.2196/52385 %U http://www.ncbi.nlm.nih.gov/pubmed/39819848 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60189 %T Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study %A Klein,Dave %A Montgomery,Aisha %A Begale,Mark %A Sutherland,Scott %A Sawyer,Sherilyn %A McCauley,Jacob L %A Husbands,Letheshia %A Joshi,Deepti %A Ashbeck,Alan %A Palmer,Marcy %A Jain,Praduman %+ Vibrent Health, Inc, 4114 Legato Rd #900, Fairfax, VA, 22033, United States, 1 6784686545, aisha.montgomery@gmail.com %K longitudinal studies %K cohort studies %K health disparities %K minority populations %K vulnerable populations %K precision medicine %K biomedical research %K decentralization %K digital health technology %K database management system %D 2025 %7 15.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Longitudinal cohort studies have traditionally relied on clinic-based recruitment models, which limit cohort diversity and the generalizability of research outcomes. Digital research platforms can be used to increase participant access, improve study engagement, streamline data collection, and increase data quality; however, the efficacy and sustainability of digitally enabled studies rely heavily on the design, implementation, and management of the digital platform being used. Objective: We sought to design and build a secure, privacy-preserving, validated, participant-centric digital health research platform (DHRP) to recruit and enroll participants, collect multimodal data, and engage participants from diverse backgrounds in the National Institutes of Health’s (NIH) All of Us Research Program (AOU). AOU is an ongoing national, multiyear study aimed to build a research cohort of 1 million participants that reflects the diversity of the United States, including minority, health-disparate, and other populations underrepresented in biomedical research (UBR). Methods: We collaborated with community members, health care provider organizations (HPOs), and NIH leadership to design, build, and validate a secure, feature-rich digital platform to facilitate multisite, hybrid, and remote study participation and multimodal data collection in AOU. Participants were recruited by in-person, print, and online digital campaigns. Participants securely accessed the DHRP via web and mobile apps, either independently or with research staff support. The participant-facing tool facilitated electronic informed consent (eConsent), multisource data collection (eg, surveys, genomic results, wearables, and electronic health records [EHRs]), and ongoing participant engagement. We also built tools for research staff to conduct remote participant support, study workflow management, participant tracking, data analytics, data harmonization, and data management. Results: We built a secure, participant-centric DHRP with engaging functionality used to recruit, engage, and collect data from 705,719 diverse participants throughout the United States. As of April 2024, 87% (n=613,976) of the participants enrolled via the platform were from UBR groups, including racial and ethnic minorities (n=282,429, 46%), rural dwelling individuals (n=49,118, 8%), those over the age of 65 years (n=190,333, 31%), and individuals with low socioeconomic status (n=122,795, 20%). Conclusions: We built a participant-centric digital platform with tools to enable engagement with individuals from different racial, ethnic, and socioeconomic backgrounds and other UBR groups. This DHRP demonstrated successful use among diverse participants. These findings could be used as best practices for the effective use of digital platforms to build and sustain cohorts of various study designs and increase engagement with diverse populations in health research. %M 39813673 %R 10.2196/60189 %U https://www.jmir.org/2025/1/e60189 %U https://doi.org/10.2196/60189 %U http://www.ncbi.nlm.nih.gov/pubmed/39813673 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60413 %T Recruiting Young People for Digital Mental Health Research: Lessons From an AI-Driven Adaptive Trial %A Zheng,Wu Yi %A Shvetcov,Artur %A Slade,Aimy %A Jenkins,Zoe %A Hoon,Leonard %A Whitton,Alexis %A Logothetis,Rena %A Ravindra,Smrithi %A Kurniawan,Stefanus %A Gupta,Sunil %A Huckvale,Kit %A Stech,Eileen %A Agarwal,Akash %A Funke Kupper,Joost %A Cameron,Stuart %A Rosenberg,Jodie %A Manoglou,Nicholas %A Senadeera,Manisha %A Venkatesh,Svetha %A Mouzakis,Kon %A Vasa,Rajesh %A Christensen,Helen %A Newby,Jill M %+ Black Dog Institute, University of New South Wales, Hospital Road, Randwick, Sydney, 2031, Australia, 61 0422510718, wuyi.zheng@blackdog.org.au %K recruitment %K Facebook %K retention, COVID-19 %K artificial intelligence %D 2025 %7 14.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: With increasing adoption of remote clinical trials in digital mental health, identifying cost-effective and time-efficient recruitment methodologies is crucial for the success of such trials. Evidence on whether web-based recruitment methods are more effective than traditional methods such as newspapers, media, or flyers is inconsistent. Here we present insights from our experience recruiting tertiary education students for a digital mental health artificial intelligence–driven adaptive trial—Vibe Up. Objective: We evaluated the effectiveness of recruitment via Facebook and Instagram compared to traditional methods for a treatment trial and compared different recruitment methods’ retention rates. With recruitment coinciding with COVID-19 lockdowns across Australia, we also compared the cost-effectiveness of social media recruitment during and after lockdowns. Methods: Recruitment was completed for 2 pilot trials and 6 minitrials from June 2021 to May 2022. To recruit participants, paid social media advertising on Facebook and Instagram was used, alongside mailing lists of university networks and student organizations or services, media releases, announcements during classes and events, study posters or flyers on university campuses, and health professional networks. Recruitment data, including engagement metrics collected by Meta (Facebook and Instagram), advertising costs, and Qualtrics data on recruitment methods and survey completion rates, were analyzed using RStudio with R (version 3.6.3; R Foundation for Statistical Computing). Results: In total, 1314 eligible participants (aged 22.79, SD 4.71 years; 1079, 82.1% female) were recruited to 2 pilot trials and 6 minitrials. The vast majority were recruited via Facebook and Instagram advertising (n=1203; 92%). Pairwise comparisons revealed that the lead institution’s website was more effective in recruiting eligible participants than Facebook (z=3.47; P=.003) and Instagram (z=4.23; P<.001). No differences were found between recruitment methods in retaining participants at baseline, at midpoint, and at study completion. Wilcoxon tests found significant differences between lockdown (pilot 1 and pilot 2) and postlockdown (minitrials 1-6) on costs incurred per link click (lockdown: median Aus $0.35 [US $0.22], IQR Aus $0.27-$0.47 [US $0.17-$0.29]; postlockdown: median Aus $1.00 [US $0.62], IQR Aus $0.70-$1.47 [US $0.44-$0.92]; W=9087; P<.001) and the amount spent per hour to reach the target sample size (lockdown: median Aus $4.75 [US $2.95], IQR Aus $1.94-6.34 [US $1.22-$3.97]; postlockdown: median Aus $13.29 [US $8.26], IQR Aus $4.70-25.31 [US $2.95-$15.87]; W=16044; P<.001). Conclusions: Social media advertising via Facebook and Instagram was the most successful strategy for recruiting distressed tertiary students into this artificial intelligence–driven adaptive trial, providing evidence for the use of this recruitment method for this type of trial in digital mental health research. No recruitment method stood out in terms of participant retention. Perhaps a reflection of the added distress experienced by young people, social media recruitment during the COVID-19 lockdown period was more cost-effective. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12621001092886; https://tinyurl.com/39f2pdmd; Australian New Zealand Clinical Trials Registry ACTRN12621001223820; https://tinyurl.com/bdhkvucv %M 39808785 %R 10.2196/60413 %U https://www.jmir.org/2025/1/e60413 %U https://doi.org/10.2196/60413 %U http://www.ncbi.nlm.nih.gov/pubmed/39808785 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e60324 %T Urban-Suburban Differences in Public Perspectives on Digitalizing Pediatric Research: Cross-Sectional Survey Study %A Fang,Heping %A Xian,Ruoling %A Li,Juan %A Li,Yingcun %A Liu,Enmei %A Zhao,Yan %A Hu,Yan %+ Department of Child Health Care, Children’s Hospital of Chongqing Medical University, Chongqing Key Laboratory of Child Rare Diseases in Infection and Immunity, Ministry of Education Key Laboratory of Child Development and Disorders, National Clinical Research Center for Child Health and Disorders, No. 20 Jinyu Avenue, Liangjiang New Area, Chongqing, 401122, China, 86 02368370551, hy420@126.com %K pediatrics %K pediatric research %K digital health %K public opinion %K research %K patient participation %K urban %K rural %K caregiver attitudes %K social media %K mobile phone %D 2025 %7 7.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Recruiting and retaining participants in pediatric research has always been challenging, particularly in healthy populations and remote areas, leading to selection bias and increased health disparities. In the digital age, medical research has been transformed by digital tools, offering new opportunities to enhance engagement in clinical research. However, public perspectives on digitalizing pediatric research and potential differences between urban and suburban areas remain unclear. Objective: This study aimed to investigate public perspectives on digitalizing pediatric research and compare differences between urban and suburban areas to help diversify participants and address health disparities. Methods: A cross-sectional web-based survey targeting caregivers of kindergarten children (aged 2-7 years) in Chongqing was conducted between June and December 2023. A total of 4231 valid questionnaires were analyzed, with 25.1% (n=1064) of the children residing in urban areas and 74.9% (n=3167) in suburban areas. Descriptive statistics and intergroup comparisons were used for data analysis. Results: Approximately 59.8% (n=2531) of the caregivers had first impressions of pediatric research, with 36.9% (n=1561) being positive and 22.9% (n=970) being negative. A total of 38.3% (n=1621) of caregivers recognized the growing popularity of digital tools, and 36.7% (n=1552) supported their use in pediatric research, but only 25.2% (n=1068) favored online-only research methods. The main concerns regarding the use of software in pediatric research were privacy issues (n=3273, 77.4%) and potential addiction (n=2457, 58.1%). Public accounts of research institutions (n=3400, 80.4%) were the most favored for online recruitment. Telephones (1916/3076, 62.3%) and social media apps (1801/3076, 58.6%) were the most popular for regular contact. Intergroup comparisons revealed that suburban caregivers had more positive first impressions of pediatric research (38.6% vs 32%; P<.001; adjusted odds ratio [aOR] 1.27, 95% CI 1.09-1.47) and faced fewer participation barriers: “worry about being an experimental subject” (70.9% vs 76.6%; P<.001; aOR 0.79, 95% CI 0.67-0.93), “pose a risk to children’s health” (58.6% vs 67.8%; P<.001; aOR 0.71, 95% CI 0.61-0.83), “do not have enough background information” (55.2% vs 61.6%; P<.001; aOR 0.78, 95% CI 0.67-0.89), and “worry about recommending other products” (48.2% vs 55%; P<.001; aOR 0.78, 95% CI 0.67-0.89). They also showed greater support for online-only research methods (26% vs 22.9%; P=.045; aOR 1.19, 95% CI 1.01-1.41) and greater openness to unofficial online recruitment sources (social media friends: 24.7% vs 18.9%; P<.001; aOR 1.33, 95% CI 1.11-1.59; moments on social media: 15.5% vs 11.1%; P<.001; aOR 1.35, 95% CI 1.09-1.67). Conclusions: In the digital age, enhancing recruitment and retention in pediatric research can be achieved by integrating both official and unofficial social media strategies, implementing a hybrid online-offline follow-up approach, and addressing privacy concerns. %M 39773676 %R 10.2196/60324 %U https://www.jmir.org/2025/1/e60324 %U https://doi.org/10.2196/60324 %U http://www.ncbi.nlm.nih.gov/pubmed/39773676 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e66800 %T Developing Guidelines for Conducting Stigma Research With Transgender and Nonbinary Individuals: Protocol for Creation of a Trauma-Informed Approach to Research %A Klein,Augustus %A Golub,Sarit A %A Berke,Danielle %A Castle,Elijah %+ Department of Psychology, Hunter College of the City University of New York (CUNY), 695 Park Ave, New York, NY, 10065, United States, 1 212 396 6084, augustus.klein@hunter.cuny.edu %K transgender %K non-binary %K HIV prevention and treatment %K stigma research %K trauma-informed %D 2025 %7 6.1.2025 %9 Protocol %J JMIR Res Protoc %G English %X Background: Transgender and nonbinary individuals have received increasing attention within HIV research, with studies documenting the pervasive role stigma plays in creating and sustaining health inequities. However, the proliferation of HIV stigma research with this population has also raised concerns about research practices that may unintentionally stigmatize or retraumatize the very communities they are designed to benefit. Conducting stigma research is critical for generating accurate information about HIV epidemiology, risk and protective factors, and intervention strategies for transgender and nonbinary individuals. Yet, little research has directly examined the experiences of transgender and nonbinary individuals when participating in these studies or identified specific research practices (eg, recruitment materials or study framing, choice of specific survey measures, data collection protocols, and researcher behaviors) that may influence study participation, retention, and data quality. Equally important, research has not adequately examined the potential for unintended harm due to emotional distress experienced by participating in such research and what specific strategies might mitigate against potential distressful research experiences. Objective: This study aimed to develop a set of empirically based trauma-informed guidelines for conducting HIV-related stigma research with transgender and nonbinary individuals to increase researchers’ capacity to recruit and retain transgender and nonbinary individuals in HIV-related stigma research, enhance the quality of data collected, and reduce unintentional harm in stigma research methodology. Methods: The study will engage in primary data collection using both qualitative and quantitative methodology. First, we will use in-depth qualitative interviews with 60 participants representing 3 participant groups: researchers, mental health clinicians, and transgender and nonbinary individuals who have participated in HIV-related and sexual health research. Second, the qualitative findings will be used to develop an initial set of survey items representing a preliminary set of guidelines. Third, we will engage 75 participants in a 3-round modified Delphi method, to refine the guidelines and promote their acceptability among key stakeholders. Results: The study is funded by the National Institute of Mental Health starting in July 2022 and data collection began January 2023. The study’s findings underscore the critical importance of adopting a trauma-informed approach to HIV stigma research with transgender and nonbinary individuals. Conclusions: To make meaningful strides in stigma research, it is imperative to examine experiences of stigma that may happen within the research context and identify strategies for improving data quality and reducing unintentional harm in study recruitment, methodology, implementation, and dissemination. International Registered Report Identifier (IRRID): DERR1-10.2196/66800 %M 39761548 %R 10.2196/66800 %U https://www.researchprotocols.org/2025/1/e66800 %U https://doi.org/10.2196/66800 %U http://www.ncbi.nlm.nih.gov/pubmed/39761548 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 14 %N %P e65099 %T Research Participants’ Engagement and Retention in Digital Health Interventions Research: Protocol for Mixed Methods Systematic Review %A Terceiro,Luciana %A Mustafa,Mudassir Imran %A Hägglund,Maria %A Kharko,Anna %+ Department of Women's and Children's Health, CIRCLE - Complex Intervention Research in Health and Care, Uppsala University, Dag Hammarskjölds väg 14B, 1tr, Uppsala, 75237, Sweden, 46 0702564467, luciana.terceiro@uu.se %K clinical research informatics %K participant engagement %K participant retention %K clinical research %K mobile application %K digital platforms %K mobile phone %D 2025 %7 3.1.2025 %9 Protocol %J JMIR Res Protoc %G English %X Background: Digital health interventions have become increasingly popular in recent years, expanding the possibilities for treatment for various patient groups. In clinical research, while the design of the intervention receives close attention, challenges with research participant engagement and retention persist. This may be partially due to the use of digital health platforms, which may lack adequacy for participants. Objective: This systematic literature review aims to investigate the relationship between digital health platforms and participant engagement and retention in clinical research. It will map and analyze key definitions of engagement and retention, as well as identify design characteristics that influence them. Methods: We will carry out a mixed methods systematic literature review, analyzing qualitative and quantitative studies. The search strategy includes the electronic databases PubMed, IEEE Xplore, CINAHL, Scopus, Web of Science, APA PsycINFO, and the ACM Digital Library. The review will encompass studies published between January 2018 and June 2024. Criteria for inclusion will be the presence of digital health care interventions conducted through digital health platforms like websites, web and mobile apps used by patients, and informal caregivers as research participants. The main outcome will be a narrative analysis with key findings on the definitions of participant engagement and retention and critical factors that affect them. Quality assessment and appraisal will be done through the Mixed-Methods Assessment Tool. Data analysis and synthesis will follow the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 flow diagram. Quantitative data will be qualified and integrated into qualitative data, which will be analyzed using thematic analysis and synthesis. Results: The study expects to map and summarize critical definitions of participant engagement and retention, and the characteristics of digital health platforms that influence them. The systematic review is expected to be completed in June 2025. Conclusions: This systematic review will contribute to the growing discussion on how the design of digital health intervention platforms can promote participant engagement and retention in clinical research. Trial Registration: PROSPERO CRD42024561650; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=561650 International Registered Report Identifier (IRRID): PRR1-10.2196/65099 %M 39752662 %R 10.2196/65099 %U https://www.researchprotocols.org/2025/1/e65099 %U https://doi.org/10.2196/65099 %U http://www.ncbi.nlm.nih.gov/pubmed/39752662 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 27 %N %P e64668 %T Recruitment of Young Gay, Bisexual, and Other Men Who Have Sex With Men for a Web-Based Human Papillomavirus Vaccination Intervention: Differences in Participant Characteristics and Study Engagement by Recruitment Source in a Randomized Controlled Trial %A Marshall,Daniel J %A Gower,Amy L %A Katz,Mira L %A Bauermeister,José A %A Shoben,Abigail B %A Reiter,Paul L %+ College of Public Health, The Ohio State University, 1841 Neil Ave., Columbus, OH, 43210, United States, 1 6142924803, reiter.36@osu.edu %K study recruitment %K gay and bisexual men %K human papillomavirus %K vaccination promotion %K digital intervention %K social media %K dating apps %K recruitment %K young adults %K adolescents %K gay %K bisexual %K men who have sex with men %D 2025 %7 3.1.2025 %9 Original Paper %J J Med Internet Res %G English %X Background: Young gay, bisexual, and other men who have sex with men have been referred to as a “hard-to-reach” or “hidden” community in terms of recruiting for research studies. With widespread internet use among this group and young adults in general, web-based avenues represent an important approach for reaching and recruiting members of this community. However, little is known about how participants recruited from various web-based sources may differ from one another. Objective: This study aimed to determine how young gay, bisexual, and other men who have sex with men recruited from various web-based sources differ from one another in terms of participant characteristics and study engagement. Methods: Data were collected as part of a randomized controlled trial of Outsmart HPV, a web-based human papillomavirus (HPV) vaccination intervention for young gay, bisexual, and other men who have sex with men. From 2019 to 2021, we recruited young gay, bisexual, and other men who have sex with men in the United States who were aged 18-25 years and not vaccinated against HPV (n=1227) through various web-based avenues. We classified each participant as being recruited from either (1) social media (eg, Facebook, Instagram, Snapchat), (2) a dating app (eg, Grindr, Scruff), or (3) some other digital recruitment source (eg, existing research panel, university-based organization). Analyses compared participants from these 3 groups on demographic and health-related characteristics and metrics involving study engagement. Results: Most demographic and health-related characteristics differed by web-based recruitment source, including race or ethnicity (P<.001), relationship status (P<.001), education level (P<.001), employment status (P<.001), sexual self-identity (P<.001), health insurance status (P<.001), disclosure of sexual orientation (P=.048), and connectedness to the LGBTQ (lesbian, gay, bisexual, transgender, queer) community (P<.001) The type of device used by participants during study enrollment also differed across groups, with smartphone use higher among participants recruited via dating apps (n=660, 96.6%) compared to those recruited via social media (n=318, 78.9%) or other digital sources (n=85, 60.3%; P<.001). Participants recruited via social media were more likely than those recruited via dating apps to complete follow-up surveys at 3 different timepoints (odds ratios 1.52-2.09, P=.001-.008). These participants also spent a longer amount of time viewing intervention content about HPV vaccination (3.14 minutes vs 2.67 minutes; P=.02). Conclusions: We were able to recruit a large national sample of young gay, bisexual, and other men who have sex with men for a web-based HPV vaccination intervention via multiple methodologies. Participants differed on a range of demographic and health-related characteristics, as well as metrics related to study engagement, based on whether they were recruited from social media, a dating app, or some other digital recruitment source. Findings highlight key issues and considerations that can help researchers better plan and customize future web-based recruitment efforts of young gay, bisexual, and other men who have sex with men. Trial Registration: ClinicalTrials.gov NCT04032106; https://clinicaltrials.gov/study/NCT04032106 International Registered Report Identifier (IRRID): RR2-10.2196/16294 %M 39752644 %R 10.2196/64668 %U https://www.jmir.org/2025/1/e64668 %U https://doi.org/10.2196/64668 %U http://www.ncbi.nlm.nih.gov/pubmed/39752644 %0 Journal Article %@ 2561-7605 %I JMIR Publications %V 7 %N %P e64636 %T Baseline Smartphone App Survey Return in the Electronic Framingham Heart Study Offspring and Omni 1 Study: eCohort Study %A Rong,Jian %A Pathiravasan,Chathurangi H %A Zhang,Yuankai %A Faro,Jamie M %A Wang,Xuzhi %A Schramm,Eric %A Borrelli,Belinda %A Benjamin,Emelia J %A Liu,Chunyu %A Murabito,Joanne M %K mHealth %K mobile health %K mobile application %K smartphone %K digital health %K digital technology %K digital intervention %K gerontology %K geriatric %K older adult %K aging %K eFHS %K eCohort %K smartphone app %K baseline app surveys %K Framingham Heart Study %K health information %K information collection %K mobile phone %D 2024 %7 31.12.2024 %9 %J JMIR Aging %G English %X Background: Smartphone apps can be used to monitor chronic conditions and offer opportunities for self-assessment conveniently at home. However, few digital studies include older adults. Objective: We aim to describe a new electronic cohort of older adults embedded in the Framingham Heart Study including baseline smartphone survey return rates and survey completion rates by smartphone type (iPhone [Apple Inc] and Android [Google LLC] users). We also aim to report survey results for selected baseline surveys and participant experience with this study’s app. Methods: Framingham Heart Study Offspring and Omni (multiethnic cohort) participants who owned a smartphone were invited to download this study’s app that contained a range of survey types to report on different aspects of health including self-reported measures from the Patient-Reported Outcomes Measurement Information System (PROMIS). iPhone users also completed 4 tasks including 2 cognitive and 2 physical function testing tasks. Baseline survey return and completion rates were calculated for 12 surveys and compared between iPhone and Android users. We calculated standardized scores for the PROMIS surveys. The Mobile App Rating Scale (MARS) was deployed 30 days after enrollment to obtain participant feedback on app functionality and aesthetics. Results: We enrolled 611 smartphone users (average age 73.6, SD 6.3 y; n=346, 56.6% women; n=88, 14.4% Omni participants; 478, 78.2% iPhone users) and 596 (97.5%) returned at least 1 baseline survey. iPhone users had higher app survey return rates than Android users for each survey (range 85.5% to 98.3% vs 73.8% to 95.2%, respectively), but survey completion rates did not differ in the 2 smartphone groups. The return rate for the 4 iPhone tasks ranged from 80.9% (380/470) for the gait task to 88.9% (418/470) for the Trail Making Test task. The Electronic Framingham Heart Study participants had better standardized t scores in 6 of 7 PROMIS surveys compared to the general population mean (t score=50) including higher cognitive function (n=55.6) and lower fatigue (n=45.5). Among 469 participants who returned the MARS survey, app functionality and aesthetics was rated high (total MARS score=8.6 on a 1‐10 scale). Conclusions: We effectively engaged community-dwelling older adults to use a smartphone app designed to collect health information relevant to older adults. High app survey return rates and very high app survey completion rates were observed along with high participant rating of this study’s app. %R 10.2196/64636 %U https://aging.jmir.org/2024/1/e64636 %U https://doi.org/10.2196/64636 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e52448 %T Social Media Recruitment as a Potential Trigger for Vulnerability: Multistakeholder Interview Study %A Matthes,Nina %A Willem,Theresa %A Buyx,Alena %A Zimmermann,Bettina M %K vulnerability %K social media %K clinical study enrollment %K clinical study recruitment %K clinical trials %K stigma %K discrimination %K injustice %K recruitment %K clinical study %K hepatitis B %K TherVacB %K clinical research %K attitudes %K patient privacy %K utilization %D 2024 %7 30.12.2024 %9 %J JMIR Hum Factors %G English %X Background: More clinical studies use social media to increase recruitment accrual. However, empirical analyses focusing on the ethical aspects pertinent when targeting patients with vulnerable characteristics are lacking. Objective: This study aims to explore expert and patient perspectives on vulnerability in the context of social media recruitment and seeks to explore how social media can reduce or amplify vulnerabilities. Methods: As part of an international consortium that tests a therapeutic vaccine against hepatitis B (TherVacB), we conducted 30 qualitative interviews with multidisciplinary experts in social media recruitment (from the fields of clinical research, public relations, psychology, ethics, philosophy, law, and social sciences) about the ethical, legal, and social challenges of social media recruitment. We triangulated the expert assessments with the perceptions of 6 patients with hepatitis B regarding social media usage and attitudes relative to their diagnosis. Results: Experts perceived social media recruitment as beneficial for reaching hard-to-reach populations and preserving patient privacy. Features that may aggravate existing vulnerabilities are the acontextual point of contact, potential breaches of user privacy, biased algorithms disproportionately affecting disadvantaged groups, and technological barriers such as insufficient digital literacy skills and restricted access to relevant technology. We also report several practical recommendations from experts to navigate these triggering effects of social media recruitment, including transparent communication, addressing algorithm bias, privacy education, and multichannel recruitment. Conclusions: Using social media for clinical study recruitment can mitigate and aggravate potential study participants’ vulnerabilities. Researchers should anticipate and address the outlined triggering effects within this study’s design and proactively define strategies to overcome them. We suggest practical recommendations to achieve this. %R 10.2196/52448 %U https://humanfactors.jmir.org/2024/1/e52448 %U https://doi.org/10.2196/52448 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 10 %N %P e51786 %T Challenges and Lessons Learned in Managing Web-Based Survey Fraud for the Garnering Effective Outreach and Research in Georgia for Impact Alliance–Community Engagement Alliance Survey Administrations %A Craig,Leslie S %A Evans,Christina L %A Taylor,Brittany D %A Patterson,Jace %A Whitfield,Kaleb %A Hill,Mekhi %A Nwagwu,Michelle %A Mubasher,Mohamed %A Bednarczyk,Robert A %A McCray,Gail G %A Gaddis,Cheryl L R %A Taylor,Natasha %A Thompson,Emily %A Douglas,Ursula %A Latimer,Saundra K %A Spivey,Sedessie G %A Henry Akintobi,Tabia %A Quarells,Rakale Collins %K web-based survey research %K data quality %K data integrity %K COVID-19 %K Georgia %K data collection %K scientists %K integrity %K transparency %K public health %K deception %K disinformation %K survey fraud %K legitimate data %D 2024 %7 24.12.2024 %9 %J JMIR Public Health Surveill %G English %X Background: Convenience, privacy, and cost-effectiveness associated with web-based data collection have facilitated the recent expansion of web-based survey research. Importantly, however, practical benefits of web-based survey research, to scientists and participants alike, are being overshadowed by the dramatic rise in suspicious and fraudulent survey submissions. Misinformation associated with survey fraud compromises data quality and data integrity with important implications for scientific conclusions, clinical practice, and social benefit. Transparency in reporting on methods used to prevent and manage suspicious and fraudulent submissions is key to protecting the veracity of web-based survey data; yet, there is limited discussion on the use of antideception strategies during all phases of survey research to detect and eliminate low-quality and fraudulent responses. Objective: This study aims to contribute to an evolving evidence base on data integrity threats associated with web-based survey research by describing study design strategies and antideception tools used during the web-based administration of the Garnering Effective Outreach and Research in Georgia for Impact Alliance–Community Engagement Alliance (GEORGIA CEAL) Against COVID-19 Disparities project surveys. Methods: GEORGIA CEAL was established in response to the COVID-19 pandemic and the need for rapid, yet, valid, community-informed, and community-owned research to guide targeted responses to a dynamic, public health crisis. GEORGIA CEAL Surveys I (April 2021 to June 2021) and II (November 2021 to January 2022) received institutional review board approval from the Morehouse School of Medicine and adhered to the CHERRIES (Checklist for Reporting Results of Internet E-Surveys). Results: A total of 4934 and 4905 submissions were received for Surveys I and II, respectively. A small proportion of surveys (Survey I: n=1336, 27.1% and Survey II: n=1024, 20.9%) were excluded due to participant ineligibility, while larger proportions (Survey I: n=1516, 42.1%; Survey II: n=1423, 36.7%) were flagged and removed due to suspicious activity; 2082 (42.2%) and 2458 (50.1%) of GEORGIA CEAL Surveys I and II, respectively, were retained for analysis. Conclusions: Suspicious activity during GEORGIA CEAL Survey I administration prompted the inclusion of additional security tools during Survey II design and administration (eg, hidden questions, Completely Automated Public Turing Test to Tell Computers and Humans Apart verification, and security questions), which proved useful in managing and detecting fraud and resulted in a higher retention rate across survey waves. By thorough discussion of experiences, lessons learned, and future directions for web-based survey research, this study outlines challenges and best practices for designing and implementing a robust defense against survey fraud. Finally, we argue that, in addition to greater transparency and discussion, community stakeholders need to be intentionally and mindfully engaged, via approaches grounded in community-based participatory research, around the potential for research to enable scientific discoveries in order to accelerate investment in quality, legitimate survey data. %R 10.2196/51786 %U https://publichealth.jmir.org/2024/1/e51786 %U https://doi.org/10.2196/51786 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e53187 %T Methodological Challenges in Randomized Controlled Trials of mHealth Interventions: Cross-Sectional Survey Study and Consensus-Based Recommendations %A Lopez-Alcalde,Jesus %A Wieland,L Susan %A Yan,Yuqian %A Barth,Jürgen %A Khami,Mohammad Reza %A Shivalli,Siddharudha %A Lokker,Cynthia %A Rai,Harleen Kaur %A Macharia,Paul %A Yun,Sergi %A Lang,Elvira %A Bwanika Naggirinya,Agnes %A Campos-Asensio,Concepción %A Ahmadian,Leila %A Witt,Claudia M %+ Institute for Complementary and Integrative Medicine, University Hospital Zurich, Sonneggstrasse 6, Zurich, CH-8091, Switzerland, 41 43 253 21 31, jesus.lopez@usz.ch %K digital health %K eHealth %K mobile health %K mHealth %K randomized controlled trial %K survey %K recommendations %K intervention integrity %K adherence %K consensus %K mobile phone %D 2024 %7 19.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Mobile health (mHealth) refers to using mobile communication devices such as smartphones to support health, health care, and public health. mHealth interventions have their own nature and characteristics that distinguish them from traditional health care interventions, including drug interventions. Thus, randomized controlled trials (RCTs) of mHealth interventions present specific methodological challenges. Identifying and overcoming those challenges is essential to determine whether mHealth interventions improve health outcomes. Objective: We aimed to identify specific methodological challenges in RCTs testing mHealth interventions’ effects and develop consensus-based recommendations to address selected challenges. Methods: A 2-phase participatory research project was conducted. First, we sent a web-based survey to authors of mHealth RCTs. Survey respondents rated on a 5-point scale how challenging they found 21 methodological aspects in mHealth RCTs compared to non-mHealth RCTs. Nonsystematic searches until June 2022 informed the selection of the methodological challenges listed in the survey. Second, a subset of survey respondents participated in an online workshop to discuss recommendations to address selected methodological aspects identified in the survey. Finally, consensus-based recommendations were developed based on the workshop discussion and email interaction. Results: We contacted 1535 authors of mHealth intervention RCTs, of whom 80 (5.21%) completed the survey. Most respondents (74/80, 92%) identified at least one methodological aspect as more or much more challenging in mHealth RCTs. The aspects most frequently reported as more or much more challenging were those related to mHealth intervention integrity, that is, the degree to which the study intervention was implemented as intended, in particular managing low adherence to the mHealth intervention (43/77, 56%), defining adherence (39/79, 49%), measuring adherence (33/78, 42%), and determining which mHealth intervention components are used or received by the participant (31/75, 41%). Other challenges were also frequent, such as analyzing passive data (eg, data collected from smartphone sensors; 24/58, 41%) and verifying the participants’ identity during recruitment (28/68, 41%). In total, 11 survey respondents participated in the subsequent workshop (n=8, 73% had been involved in at least 2 mHealth RCTs). We developed 17 consensus-based recommendations related to the following four categories: (1) how to measure adherence to the mHealth intervention (7 recommendations), (2) defining adequate adherence (2 recommendations), (3) dealing with low adherence rates (3 recommendations), and (4) addressing mHealth intervention components (5 recommendations). Conclusions: RCTs of mHealth interventions have specific methodological challenges compared to those of non-mHealth interventions, particularly those related to intervention integrity. Following our recommendations for addressing these challenges can lead to more reliable assessments of the effects of mHealth interventions on health outcomes. %M 39700488 %R 10.2196/53187 %U https://www.jmir.org/2024/1/e53187 %U https://doi.org/10.2196/53187 %U http://www.ncbi.nlm.nih.gov/pubmed/39700488 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e60504 %T Improving Participant Recruitment in Clinical Trials: Comparative Analysis of Innovative Digital Platforms %A Bikou,Alexia Georgia %A Deligianni,Elena %A Dermiki-Gkana,Foteini %A Liappas,Nikolaos %A Teriús-Padrón,José Gabriel %A Beltrán Jaunsarás,Maria Eugenia %A Cabrera-Umpiérrez,Maria Fernanda %A Kontogiorgis,Christos %+ Department of Medicine, Democritus University of Thrace, 6th kilometer Dragana, Alexandroupolis, 68100, Greece, 30 2551030601, ckontogi@med.duth.gr %K clinical research %K e-recruitment %K patient matching %K clinical trials %K digital platforms %K enrollment %K electronic consent %D 2024 %7 18.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Pharmaceutical product development relies on thorough and costly clinical trials. Participant recruitment and monitoring can be challenging. The incorporation of cutting-edge technologies such as blockchain and artificial intelligence has revolutionized clinical research (particularly in the recruitment stage), enhanced secure data storage and analysis, and facilitated participant monitoring while protecting their personal information. Objective: This study aims to investigate the use of novel digital platforms and their features, such as e-recruitment, e-consent, and matching, aiming to optimize and expedite clinical research. Methods: A review with a systematic approach was conducted encompassing literature from January 2000 to October 2024. The MEDLINE, ScienceDirect, Scopus, and Google Scholar databases were examined thoroughly using a customized search string. Inclusion criteria focused on digital platforms involving clinical trial recruitment phases that were in English and had international presence, scientific validation, regulatory approval, and no geographic limitations. Literature reviews and unvalidated digital platforms were excluded. The selected studies underwent meticulous screening by the research team, ensuring a thorough analysis of novel digital platforms and their use and features for clinical trials. Results: A total of 24 digital platforms were identified that supported clinical trial recruitment phases. In general, most of them (n=22, 80%) are headquartered and operating in the United States, providing a range of functionalities including electronic consent (n=14, 60% of the platforms), participant matching, and monitoring of patients’ health status. These supplementary features enhance the overall effectiveness of the platforms in facilitating the recruitment process for clinical trials. The analysis and digital platform findings refer to a specific time frame when the investigation took place, and a notable surge was observed in the adoption of these novel digital tools, particularly following the COVID-19 outbreak. Conclusions: This study underscores the vital role of the identified digital platforms in clinical trials, aiding in recruitment, enhancing patient engagement, accelerating procedures, and personalizing vital sign monitoring. Despite their impact, challenges in accessibility, compatibility, and transparency require careful consideration. Addressing these challenges is crucial for optimizing digital tool integration into clinical research, allowing researchers to harness the benefits while managing the associated risks effectively. %M 39693619 %R 10.2196/60504 %U https://www.jmir.org/2024/1/e60504 %U https://doi.org/10.2196/60504 %U http://www.ncbi.nlm.nih.gov/pubmed/39693619 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e60231 %T Sample Size Requirements for Popular Classification Algorithms in Tabular Clinical Data: Empirical Study %A Silvey,Scott %A Liu,Jinze %+ Department of Biostatistics, School of Public Health, Virginia Commonwealth University, 830 East Main Street, Richmond, VA, 23219, United States, 1 4348256974, silveys@vcu.edu %K medical informatics %K machine learning %K sample size %K research design %K decision trees %K classification algorithm %K clinical research %K learning-curve analysis %K analysis %K analyses %K guidelines %K ML %K decision making %K algorithm %K curve analysis %K dataset %D 2024 %7 17.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: The performance of a classification algorithm eventually reaches a point of diminishing returns, where the additional sample added does not improve the results. Thus, there is a need to determine an optimal sample size that maximizes performance while accounting for computational burden or budgetary concerns. Objective: This study aimed to determine optimal sample sizes and the relationships between sample size and dataset-level characteristics over a variety of binary classification algorithms. Methods: A total of 16 large open-source datasets were collected, each containing a binary clinical outcome. Furthermore, 4 machine learning algorithms were assessed: XGBoost (XGB), random forest (RF), logistic regression (LR), and neural networks (NNs). For each dataset, the cross-validated area under the curve (AUC) was calculated at increasing sample sizes, and learning curves were fit. Sample sizes needed to reach the observed full–dataset AUC minus 2 points (0.02) were calculated from the fitted learning curves and compared across the datasets and algorithms. Dataset–level characteristics, minority class proportion, full–dataset AUC, number of features, type of features, and degree of nonlinearity were examined. Negative binomial regression models were used to quantify relationships between these characteristics and expected sample sizes within each algorithm. A total of 4 multivariable models were constructed, which selected the best-fitting combination of dataset–level characteristics. Results: Among the 16 datasets (full-dataset sample sizes ranging from 70,000-1,000,000), median sample sizes were 9960 (XGB), 3404 (RF), 696 (LR), and 12,298 (NN) to reach AUC stability. For all 4 algorithms, more balanced classes (multiplier: 0.93-0.96 for a 1% increase in minority class proportion) were associated with decreased sample size. Other characteristics varied in importance across algorithms—in general, more features, weaker features, and more complex relationships between the predictors and the response increased expected sample sizes. In multivariable analysis, the top selected predictors were minority class proportion among all 4 algorithms assessed, full–dataset AUC (XGB, RF, and NN), and dataset nonlinearity (XGB, RF, and NN). For LR, the top predictors were minority class proportion, percentage of strong linear features, and number of features. Final multivariable sample size models had high goodness-of-fit, with dataset–level predictors explaining a majority (66.5%-84.5%) of the total deviance in the data among all 4 models. Conclusions: The sample sizes needed to reach AUC stability among 4 popular classification algorithms vary by dataset and method and are associated with dataset–level characteristics that can be influenced or estimated before the start of a research study. %M 39689306 %R 10.2196/60231 %U https://www.jmir.org/2024/1/e60231 %U https://doi.org/10.2196/60231 %U http://www.ncbi.nlm.nih.gov/pubmed/39689306 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e51536 %T Demographics and Health Characteristics Associated With the Likelihood of Participating in Digitally Delivered Exercise Rehabilitation for Improving Heart Health Among Breast Cancer Survivors: Cross-Sectional Survey Study %A Jones,Tamara %A Edbrooke,Lara %A Rawstorn,Jonathan C %A Denehy,Linda %A Hayes,Sandra %A Maddison,Ralph %A Sverdlov,Aaron L %A Koczwara,Bogda %A Kiss,Nicole %A Short,Camille E %K digital health %K breast cancer %K exercise %K rehabilitation %K cardiotoxicity %K demographic %K cancer survivor %K exercise rehabilitation %K home-based program %K pathologic process %K radiation %K physical phenomena %K heart care %K cardiovascular disease %K diagnosis %K cross-sectional study %K chronic disease %K statistics %D 2024 %7 16.12.2024 %9 %J JMIR Cancer %G English %X Background: Strong evidence supports the benefits of exercise following both cardiovascular disease and cancer diagnoses. However, less than one-third of Australians who are referred to exercise rehabilitation complete a program following a cardiac diagnosis. Technological advances make it increasingly possible to embed real-time supervision, tailored exercise prescription, behavior change, and social support into home-based programs. Objective: This study aimed to explore demographic and health characteristics associated with the likelihood of breast cancer survivors uptaking a digitally delivered cardiac exercise rehabilitation program and to determine whether this differed according to intervention timing (ie, offered generally, before, during, or after treatment). Secondary aims were to explore the knowledge of cardiac-related treatment side-effects, exercise behavior, additional intervention interests (eg, diet, fatigue management), and service fee capabilities. Methods: This cross-sectional study involved a convenience sample of breast cancer survivors recruited via social media. A self-reported questionnaire was used to collect outcomes of interests, including the likelihood of uptaking a digitally delivered cardiac exercise rehabilitation program, and demographic and health characteristics. Descriptive statistics were used to summarize sample characteristics and outcomes. Ordered logistic regression models were used to examine associations between demographic and health characteristics and likelihood of intervention uptake generally, before, during, and after treatment, with odds ratios (ORs) <0.67 or >1.5 defined as clinically meaningful and statistical significance a priori set at P≤.05. Results: A high proportion (194/208, 93%) of the sample (mean age 57, SD 11 years; median BMI=26, IQR 23‐31 kg/m2) met recommended physical activity levels at the time of the survey. Living in an outer regional area (compared with living in a major city) was associated with higher odds of uptake in each model (OR 3.86‐8.57, 95% CI 1.04-68.47; P=.01‐.04). Receiving more cardiotoxic treatments was also associated with higher odds of general uptake (OR 1.42, 95% CI 1.02-1.96; P=.04). There was some evidence that a higher BMI, more comorbid conditions, and lower education (compared with university education) were associated with lower odds of intervention uptake, but findings differed according to intervention timing. Respondents identified the need for better education about the cardiotoxic effects of breast cancer treatment, and the desire for multifaceted rehabilitation interventions that are free or low cost (median Aus $10, IQR 10-15 per session; Aus $1=US $0.69 at time of study). Conclusions: These findings can be used to better inform future research and the development of intervention techniques that are critical to improving the delivery of a digital service model that is effective, equitable, and accessible, specifically, by enhancing digital inclusion, addressing general exercise barriers experienced by chronic disease populations, incorporating multidisciplinary care, and developing affordable delivery models. %R 10.2196/51536 %U https://cancer.jmir.org/2024/1/e51536 %U https://doi.org/10.2196/51536 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 7 %N %P e62919 %T Recruitment of Adolescents to Virtual Clinical Trials: Recruitment Results From the Health4Me Randomized Controlled Trial %A Raeside,Rebecca %A Todd,Allyson R %A Barakat,Sarah %A Rom,Sean %A Boulet,Stephanie %A Maguire,Sarah %A Williams,Kathryn %A Mihrshahi,Seema %A Hackett,Maree L %A Redfern,Julie %A Partridge,Stephanie R %A , %K adolescents %K clinical trial %K recruitment %K digital health %K prevention %K adolescent health %K health behavior change %K health promotion %K social media %D 2024 %7 16.12.2024 %9 %J JMIR Pediatr Parent %G English %X Background: Preventive interventions are needed to provide targeted health support to adolescents to improve health behaviors. Engaging adolescents in preventive interventions remains a challenge, highlighting the need for innovative recruitment strategies. Given adolescents’ lives are intertwined with digital technologies, attention should be focused on these avenues for recruitment. The evolving nature of clinical trials, including the emergence of virtual clinical trials, requires new recruitment approaches, which must be evaluated. Objective: This study aimed to examine the effectiveness and cost of various digital recruitment strategies for recruiting adolescents to a virtual clinical trial, evaluate the progression of participants from screening to enrollment, and explore factors associated with nonparticipation. This was conducted using data from the Health4Me Study, a preventive digital health intervention to improve physical activity and nutrition behaviors among adolescents aged 12 to 18 years. Methods: Participants were recruited into the Health4Me Study via social media advertisements on various contemporary platforms, emails to schools, emails to contacts within known networks, and emails to relevant youth organizations. Data were collected from social media advertisements, screening, and recruitment logs. Data analysis included summary and descriptive statistics, as well as chi-square tests to explore factors associated with nonparticipation. Results: From 2369 expressions of interest, 390 (16.4%) participants were enrolled. A total of 19 advertisements were placed on social media, and 385 promotional emails were sent to schools, contacts within known networks, and relevant youth organizations. Social media advertisements reached 408,077 unique accounts. Advertisements mostly reached those living in populous states in Australia (306,489/408,077, 75.11% of unique accounts) and those identifying as female (177,698/408,077, 43.55% of unique accounts). A total of 24.97% (101,907/408,077) of advertisements were delivered to accounts with uncategorized genders. The total cost per participant enrolled was Aus $3.89 (approximately US $2.58). Most participants (1980/2305, 85.90%) found out about this study through Instagram. Differences in screening characteristics between eligible participants who did and did not enroll were found to be statistically significant for gender (P=.02), with fewer males and more individuals reporting their gender as “other” enrolling than expected by chance alone. The recruitment method also differed (P<.001), with fewer participants enrolling through Instagram and more enrolling through other methods (eg, known networks or word of mouth) than expected by chance alone. Conclusions: This study found that virtual clinical trial recruitment was found to be low-cost, with the potential to increase trial participation. Social media was the most effective recruitment method, reaching all states and territories, including hard-to-reach populations. Future action is needed to explore recruitment methods that are more effective for males and to build trust among adolescents regarding clinical trial recruitment via social media. Trial Registration: Australia New Zealand Clinical Trials Registry ACTRN12622000949785; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=383576&isReview=true %R 10.2196/62919 %U https://pediatrics.jmir.org/2024/1/e62919 %U https://doi.org/10.2196/62919 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e60193 %T Impact of Providing a Personalized Data Dashboard on Ecological Momentary Assessment Compliance Among College Students Who Use Substances: Pilot Microrandomized Trial %A Linden-Carmichael,Ashley %A Stull,Samuel W %A Wang,Danny %A Bhandari,Sandesh %A Lanza,Stephanie T %+ The Edna Bennett Pierce Prevention Research Center, The Pennsylvania State University, 320E Biobehavioral Health Building, University Park, PA, 16802, United States, 1 541 346 1978, AshleyLC@uoregon.edu %K ecological momentary assessment %K data dashboard %K study compliance %K substance use %K substance use behavior %K college student %K alcohol %K cannabis %K cannabis use %K personalized data dashboard %K EMA protocol %K EMA %K health behaviors %K survey %K compliance %K self-reported %D 2024 %7 5.12.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: The landscape of substance use behavior among young adults has observed rapid changes over time. Intensive longitudinal designs are ideal for examining and intervening in substance use behavior in real time but rely on high participant compliance in the study protocol, representing a significant challenge for researchers. Objective: This study aimed to evaluate the effect of including a personalized data dashboard (DD) in a text-based survey prompt on study compliance outcomes among college students participating in a 21-day ecological momentary assessment (EMA) study. Methods: Participants (N=91; 61/91, 67% female and 84/91, 92% White) were college students who engaged in recent alcohol and cannabis use. Participants were randomized to either complete a 21-day EMA protocol with 4 prompts/d (EMA Group) or complete the same EMA protocol with 1 personalized message and a DD indicating multiple metrics of progress in the study, delivered at 1 randomly selected prompt/d (EMA+DD Group) via a microrandomized design. Study compliance, completion time, self-reported protocol experiences, and qualitative responses were assessed for both groups. Results: Levels of compliance were similar across groups. Participants in the EMA+DD Group had overall faster completion times, with significant week-level differences in weeks 2 and 3 of the study (P=.047 and P=.03, respectively). Although nonsignificant, small-to-medium effect sizes were observed when comparing the groups in terms of compensation level (P=.08; Cohen w=0.19) and perceived burden (P=.09; Cohen d=-0.36). Qualitative findings revealed that EMA+DD participants perceived that seeing their progress facilitated engagement. Within the EMA+DD Group, providing a DD at the moment level did not significantly impact participants’ likelihood of completing the EMA or completion time at that particular prompt (all P>.05), with the exception of the first prompt of the day (P=.01 and P<.001). Conclusions: Providing a DD may be useful to increase engagement, particularly for researchers aiming to assess health behaviors shortly after a survey prompt is deployed to participants’ mobile devices. International Registered Report Identifier (IRRID): RR2-10.2196/57664 %M 39637378 %R 10.2196/60193 %U https://formative.jmir.org/2024/1/e60193 %U https://doi.org/10.2196/60193 %U http://www.ncbi.nlm.nih.gov/pubmed/39637378 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e51877 %T Challenges and Approaches to Recruitment for and Retention in a Dyad-Focused eHealth Intervention During COVID-19: Randomized Controlled Trial %A Ma,Chunxuan %A Adler,Rachel H %A Neidre,Daria B %A Chen,Ronald C %A Northouse,Laurel L %A Rini,Christine %A Tan,Xianming %A Song,Lixin %+ School of Nursing, Mays Cancer Center, University of Texas Health Science Center at San Antonio, 7703 Floyd Curl Dr, San Antonio, TX, 78229, United States, 1 210 450 8561, songl2@uthscsa.edu %K randomized controlled trials %K RCT %K prostate cancer %K accrual %K retention %K COVID-19 pandemic %K family-based research %D 2024 %7 3.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Family-based randomized controlled trials (RCTs) encounter recruitment and retention challenges. Cancer-focused RCTs typically recruit convenience samples from local cancer centers and hospitals. Objective: This study aimed to examine the recruitment and retention of a population-based, patient-partner dyad cohort in an RCT testing a dyadic eHealth intervention to improve the quality of life in patients with prostate cancer and their partners. Methods: In this 2-arm, parallel-group RCT, men who recently completed treatment for localized prostate cancer statewide were recruited through North Carolina Central Cancer Registry rapid case ascertainment between April 2018 and April 2021, coinciding with the COVID-19 pandemic. Patient-partner dyads underwent baseline assessments and were randomly assigned to either the intervention or control groups. Follow-up surveys were conducted at 4, 8, and 12 months after baseline. Descriptive and logistic regression analyses were used to achieve the study’s aims. Results: Of the 3078 patients referred from rapid case ascertainment, 2899 were screened. A total of 357 partners were approached after obtaining the eligible patients’ permission, 280 dyads completed baseline assessments and were randomized (dyad enrollment rate: 85.11%, 95% CI 81.3%-88.9%), and 221 dyads completed the 12-month follow-up (retention rate: 78.93%, 95% CI 74.2%-83.7%). Regarding the factors associated with retention, compared with White participants, people self-reporting as “other races” (including American Indian, Asian, and multiracial) were more likely to drop out of the study (odds ratio 2.78, 95% CI 1.10-7.04), and older participants were less likely to withdraw (odds ratio 0.96, 95% CI 0.92-0.99). Conclusions: Despite the negative impact of the pandemic, we successfully recruited enough patient-partner dyads to test our RCT hypotheses. Our recruitment and retention rates were equivalent to or higher than those in most dyadic intervention studies. A well-functioning research team and specific strategies (eg, eHealth intervention, internet phone, and online surveys) facilitated the recruitment and retention of patients with prostate cancer and their partners during the unprecedented pandemic. Trial Registration: ClinicalTrials.gov NCT03489057; https://clinicaltrials.gov/study/NCT03489057 International Registered Report Identifier (IRRID): RR2-https://doi.org/10.1186/s13063-021-05948-5 %M 39625741 %R 10.2196/51877 %U https://www.jmir.org/2024/1/e51877 %U https://doi.org/10.2196/51877 %U http://www.ncbi.nlm.nih.gov/pubmed/39625741 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e63032 %T Comparing Health Survey Data Cost and Quality Between Amazon’s Mechanical Turk and Ipsos’ KnowledgePanel: Observational Study %A Herman,Patricia M %A Slaughter,Mary E %A Qureshi,Nabeel %A Azzam,Tarek %A Cella,David %A Coulter,Ian D %A DiGuiseppi,Graham %A Edelen,Maria Orlando %A Kapteyn,Arie %A Rodriguez,Anthony %A Rubinstein,Max %A Hays,Ron D %+ RAND, 1776 Main Street, Santa Monica, CA, 90407, United States, 1 3103930411 ext 7129, pherman@rand.org %K data collection %K probability panel %K convenience sample %K data quality %K weighting %K back pain %K misrepresentation %K Amazon %K Mechanical Turk %K MTurk %K convenience panel %K KnowledgePanel %D 2024 %7 29.11.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Researchers have many options for web-based survey data collection, ranging from access to curated probability-based panels, where individuals are selectively invited to join based on their membership in a representative population, to convenience panels, which are open for anyone to join. The mix of respondents available also varies greatly regarding representation of a population of interest and in motivation to provide thoughtful and accurate responses. Despite the additional dataset-building labor required of the researcher, convenience panels are much less expensive than probability-based panels. However, it is important to understand what may be given up regarding data quality for those cost savings. Objective: This study examined the relative costs and data quality of fielding equivalent surveys on Amazon’s Mechanical Turk (MTurk), a convenience panel, and KnowledgePanel, a nationally representative probability-based panel. Methods: We administered the same survey measures to MTurk (in 2021) and KnowledgePanel (in 2022) members. We applied several recommended quality assurance steps to enhance the data quality achieved using MTurk. Ipsos, the owner of KnowledgePanel, followed their usual (industry standard) protocols. The survey was designed to support psychometric analyses and included >60 items from the Patient-Reported Outcomes Measurement Information System (PROMIS), demographics, and a list of health conditions. We used 2 fake conditions (“syndomitis” and “chekalism”) to identify those more likely to be honest respondents. We examined the quality of each platform’s data using several recommended metrics (eg, consistency, reliability, representativeness, missing data, and correlations) including and excluding those respondents who had endorsed a fake condition and examined the impact of weighting on representativeness. Results: We found that prescreening in the MTurk sample (removing those who endorsed a fake health condition) improved data quality but KnowledgePanel data quality generally remained superior. While MTurk’s unweighted point estimates for demographics exhibited the usual mismatch with national averages (younger, better educated, and lower income), weighted MTurk data matched national estimates. KnowledgePanel’s point estimates better matched national benchmarks even before poststratification weighting. Correlations between PROMIS measures and age and income were similar in MTurk and KnowledgePanel; the mean absolute value of the difference between each platform’s 137 correlations was 0.06, and 92% were <0.15. However, correlations between PROMIS measures and educational level were dramatically different; the mean absolute value of the difference across these 17 correlation pairs was 0.15, the largest difference was 0.29, and the direction of more than half of these relationships in the MTurk sample was the opposite from that expected from theory. Therefore, caution is needed if using MTurk for studies where educational level is a key variable. Conclusions: The data quality of our MTurk sample was often inferior to that of the KnowledgePanel sample but possibly not so much as to negate the benefits of its cost savings for some uses. International Registered Report Identifier (IRRID): RR2-10.1186/s12891-020-03696-2 %M 39612505 %R 10.2196/63032 %U https://www.jmir.org/2024/1/e63032 %U https://doi.org/10.2196/63032 %U http://www.ncbi.nlm.nih.gov/pubmed/39612505 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e57747 %T Short-Form Video Informed Consent Compared With Written Consent for Adolescents and Young Adults: Randomized Experiment %A Afolabi,Aliyyat %A Cheung,Elaine %A Lyu,Joanne Chen %A Ling,Pamela M %+ Center for Tobacco Control Research and Education, University of California San Francisco, 530 Parnassus Avenue, Suite 366, San Francisco, CA, 94143-1390, United States, 1 4155148627, Pamela.Ling@ucsf.edu %K health communication %K video informed consent %K randomized experiment %K informed consent %K adolescent %K video %K consent %K e-cigarette %K vaping %K health research %K social media %K vaping cessation %K smoking cessation %D 2024 %7 22.11.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Adolescents and young adults have the highest prevalence of e-cigarette use (“vaping”), but they are difficult to enroll in health research studies. Previous studies have found that video consent can improve comprehension and make informed consent procedures more accessible, but the videos in previous studies are much longer than videos on contemporary social media platforms that are popular among young people. Objective: This study aimed to examine the effectiveness of a short-form (90-second) video consent compared with a standard written consent for a vaping cessation study for adolescents and young adults. Methods: We conducted a web-based experiment with 435 adolescents and young adults (aged 13-24 years) recruited by a web-based survey research provider. Each participant was randomly assigned to view either a short-form video consent or a written consent form describing a behavioral study of a social media–based vaping cessation program. Participants completed a postexposure survey measuring three outcomes: (1) comprehension of the consent information, (2) satisfaction with the consent process, and (3) willingness to participate in the described study. Independent sample 2-tailed t tests and chi-square tests were conducted to compare the outcomes between the 2 groups. Results: In total, 435 cases comprised the final analytic sample (video: n=215, 49.4%; written: n=220, 50.6%). There was no significant difference in characteristics between the 2 groups (all P>.05). Participants who watched the short-form video completed the consent review and postconsent survey process in less time (average 4.5 minutes) than those in the written consent group (5.1 minutes). A total of 83.2% (179/215) of the participants in the video consent condition reported satisfaction with the overall consent process compared with 76.3% (168/220) in the written consent condition (P=.047). There was no difference in the ability to complete consent unassisted and satisfaction with the amount of time between study conditions. There was no difference in the composite measure of overall comprehension, although in individual measures, participants who watched the short-form video consent performed better in 4 measures of comprehension about risk, privacy, and procedures, while participants who read the written document consent had better comprehension of 2 measures of study procedures. There was no difference between the groups in willingness to participate in the described study. Conclusions: Short-form informed consent videos had similar comprehension and satisfaction with the consent procedure among adolescents and young adults. Short-form informed consent videos may be a feasible and acceptable alternative to the standard written consent process, although video and written consent forms have different strengths with respect to comprehension. Because they match how young people consume media, short-form videos may be particularly well suited for adolescents and young adults participating in research. %M 39576682 %R 10.2196/57747 %U https://formative.jmir.org/2024/1/e57747 %U https://doi.org/10.2196/57747 %U http://www.ncbi.nlm.nih.gov/pubmed/39576682 %0 Journal Article %@ 1929-073X %I JMIR Publications %V 13 %N %P e58771 %T Dropout in a Longitudinal Survey of Amazon Mechanical Turk Workers With Low Back Pain: Observational Study %A Qureshi,Nabeel %A Hays,Ron D %A Herman,Patricia M %+ RAND Health Care, RAND Corporation, 1776 Main Street, Santa Monica, CA, 90401, United States, 1 3103930411 ext 6054, nqureshi@rand.org %K chronic low back pain %K Mechanical Turk %K MTurk %K survey attrition %K survey weights %K Amazon %K occupational health %K manual labor %D 2024 %7 11.11.2024 %9 Original Paper %J Interact J Med Res %G English %X Background: Surveys of internet panels such as Amazon’s Mechanical Turk (MTurk) are common in health research. Nonresponse in longitudinal studies can limit inferences about change over time. Objective: This study aimed to (1) describe the patterns of survey responses and nonresponse among MTurk members with back pain, (2) identify factors associated with survey response over time, (3) assess the impact of nonresponse on sample characteristics, and (4) assess how well inverse probability weighting can account for differences in sample composition. Methods: We surveyed adult MTurk workers who identified as having back pain. We report participation trends over 3 survey waves and use stepwise logistic regression to identify factors related to survey participation in successive waves. Results: A total of 1678 adults participated in wave 1. Of those, 983 (59%) participated in wave 2 and 703 (42%) in wave 3. Participants who did not drop out took less time to complete previous surveys (30 min vs 35 min in wave 1, P<.001; 24 min vs 26 min in wave 2, P=.02) and reported having fewer health conditions (5.88 vs 6.6, P<.001). In multivariate models predicting responding at wave 2, lower odds of participation were associated with more time to complete the baseline survey (odds ratio [OR] 0.98, 95% CI 0.97-0.99), being Hispanic (compared with non-Hispanic, OR 0.69, 95% CI 0.49-0.96), having a bachelor’s degree as their terminal degree (compared with all other levels of education, OR 0.58, 95% CI 0.46-0.73), having more pain interference and intensity (OR 0.75, 95% CI 0.64-0.89), and having more health conditions. In contrast, older respondents (older than 45 years age compared with 18-24 years age) were more likely to respond to the wave 2 survey (OR 2.63 and 3.79, respectively) and those whose marital status was divorced (OR 1.81) and separated (OR 1.77) were also more likely to respond to the wave 2 survey. Weighted analysis showed slight differences in sample demographics and conditions and larger differences in pain assessments, particularly for those who responded to wave 2. Conclusions: Longitudinal studies on MTurk have large, differential dropouts between waves. This study provided information about the individuals more likely to drop out over time, which can help researchers prepare for future surveys. %M 39527103 %R 10.2196/58771 %U https://www.i-jmr.org/2024/1/e58771 %U https://doi.org/10.2196/58771 %U http://www.ncbi.nlm.nih.gov/pubmed/39527103 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e57165 %T Insights From the Development of a Dynamic Consent Platform for the Australians Together Health Initiative (ATHENA) Program: Interview and Survey Study %A Xiong,Eddy %A Bonner,Carissa %A King,Amanda %A Bourne,Zoltan Maxwell %A Morgan,Mark %A Tolosa,Ximena %A Stanton,Tony %A Greaves,Kim %+ The Australians Together Health Initiative Program (The ATHENA Program), Sunshine Coast University Hospital, Queensland Health, 6 Doherty Street, Birtinya, Queensland, 4575, Australia, 61 0427389900, kim.greaves@health.qld.gov.au %K dynamic consent %K research %K clinical trials %K consumer engagement %K digital consent %K development %K decision making %K decision %K feedback %K user platform %K users %K communication %D 2024 %7 6.11.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Dynamic consent has the potential to address many of the issues facing traditional paper-based or electronic consent, including enrolling informed and engaged participants in the decision-making process. The Australians Together Health Initiative (ATHENA) program aims to connect participants across Queensland, Australia, with new research opportunities. At its core is dynamic consent, an interactive and participant-centric digital platform that enables users to view ongoing research activities, update consent preferences, and have ongoing engagement with researchers. Objective: This study aimed to describe the development of the ATHENA dynamic consent platform within the framework of the ATHENA program, including how the platform was designed, its utilization by participants, and the insights gained. Methods: One-on-one interviews were undertaken with consumers, followed by a workshop with health care staff to gain insights into the dynamic consent concept. Five problem statements were developed, and solutions were posed, from which a dynamic consent platform was constructed, tested, and used for implementation in a clinical trial. Potential users were randomly recruited from a pre-existing pool of 615 participants in the ATHENA program. Feedback on user platform experience was gained from a survey hosted on the platform. Results: In the 13 consumer interviews undertaken, participants were positive about dynamic consent, valuing privacy, ease of use, and adequate communication. Motivators for registration were feedback on data usage and its broader community benefits. Problem statements were security, trust and governance, ease of use, communication, control, and need for a scalable platform. Using the newly constructed dynamic consent platform, 99 potential participants were selected, of whom 67 (68%) were successfully recontacted. Of these, 59 (88%) agreed to be sent the platform, 44 (74%) logged on (indicating use), and 22 (57%) registered for the clinical trial. Survey feedback was favorable, with an average positive rating of 78% across all questions, reflecting satisfaction with the clarity, brevity, and flexibility of the platform. Barriers to implementation included technological and health literacy. Conclusions: This study describes the successful development and testing of a dynamic consent platform that was well-accepted, with users recognizing its advantages over traditional methods of consent regarding flexibility, ease of communication, and participant satisfaction. This information may be useful to other researchers who plan to use dynamic consent in health care research. %M 39504120 %R 10.2196/57165 %U https://formative.jmir.org/2024/1/e57165 %U https://doi.org/10.2196/57165 %U http://www.ncbi.nlm.nih.gov/pubmed/39504120 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 7 %N %P e58136 %T Participant Motivators and Expectations in the MEL-SELF Randomized Clinical Trial of Patient-Led Surveillance for Recurrent Melanoma: Content Analysis of Survey Responses %A Ackermann,Deonna %A Hersch,Jolyn %A Jordan,Dana %A Clinton-Gray,Emily %A Bracken,Karen %A Janda,Monika %A Turner,Robin %A Bell,Katy %+ School of Public Health, Faculty of Medicine and Health, The University of Sydney, Camperdown NSW, Sydney, 2050, Australia, 61 418219923, deonna.ackermann@sydney.edu.au %K teledermatology %K melanoma %K randomized controlled trial %K trial recruitment and retention %K studies within a trial %K SWATs %K dermatology %K cancer %K early detection %K dermatology clinical trials %K clinical trials %K mobile phone %D 2024 %7 17.10.2024 %9 Original Paper %J JMIR Dermatol %G English %X Background: Limited data exist on the motivations and expectations of participants when enrolling in dermatology clinical trials, including melanoma early detection trials. Understanding participant motivators for research engagement has been identified as a prioritized area for trial methodology research. Objective: The study aimed to determine motivators of participation and expectations from trial involvement among patients enrolled in the MEL-SELF randomized clinical trial of patient-led surveillance for new or recurrent melanoma. Methods: The MEL-SELF trial is recruiting patients previously treated for localized melanoma, who own a smartphone, have a partner to assist with skin self-examination (SSE), and attend routinely scheduled follow-up at specialist and primary care skin clinics in Australia. We evaluated responses from the first 100 randomized participants to 2 open-ended questions about their motivations and expectations for participating in the trial, administered through the internet-based baseline questionnaire. A total of 3 coders independently coded the free-text responses and resolved discrepancies through consensus. Qualitative content analysis by an iterative process was used to group responses into themes. Responses from potential participants who were not randomized and the 404 participants randomized subsequently into the trial, were also checked for new themes. Coding and analysis were conducted in Microsoft Excel. Results: Out of the 100 survey participants, 98 (98%) answered at least 1 of the 2 questions. Overall, responses across the motivation and expectation items indicated 3 broad themes: community benefit, perceived personal benefit, and trusting relationship with their health care provider. The most common motivators for participation were related to community benefit. These included progressing medical research, benefitting future melanoma patients who may have similar experiences, and broader altruistic sentiments such as “helping others” or “giving back.” The most common expectations from the trial related to personal benefit. These included perceived improved outcomes such as earlier diagnosis and treatment, access to additional care, and increased self-empowerment to take actions themselves that benefit their health. Patients expressed a desire to gain health-related knowledge and skills and were interested in the potential advantages of teledermatology. There were no new themes in responses from those who were not randomized or were randomized subsequent to the first 100. Conclusions: We report a tailorable, patient-focused approach to identify drivers of research engagement in clinical research. Clinical trials offer an opportunity to collate a substantial evidence base on determinants of research participation and to identify context-specific factors. Results from the MEL-SELF trial emphasized notable altruism, self-empowerment, and perceived advantages of teledermatology as specific motivators. These findings informed consent processes, recruitment, retention, response to trial tasks, and intervention adherence for the MEL-SELF host trial. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000176864. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379527& %M 39418647 %R 10.2196/58136 %U https://derma.jmir.org/2024/1/e58136 %U https://doi.org/10.2196/58136 %U http://www.ncbi.nlm.nih.gov/pubmed/39418647 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e51751 %T Using Social Media to Recruit Participants in Health Care Research: Case Study %A Wright,Amy L %A Willett,Ysabella Jayne %A Ferron,Era Mae %A Kumarasamy,Vithusa %A Lem,Sarah M %A Ahmed,Ossaid %+ Lawrence Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Toronto, ON, M5T 1P8, Canada, 1 4169468183, amyl.wright@utoronto.ca %K social media %K qualitative methods %K recruitment strategies %K healthcare research %K digital health %K internet %K %D 2024 %7 11.10.2024 %9 Viewpoint %J J Med Internet Res %G English %X This paper presents a case study describing the use of social media, specifically Facebook and Instagram, as a valuable tool for recruiting participants in community-engaged health care studies. Drawing on the experiences of our team during a qualitative study aiming to understand the needs of Indigenous fathers and Two-Spirit parents as they transition to parenthood, we offer an in-depth exploration of our social media recruitment strategy. This strategy encompasses deliberate content creation and online engagement with local Indigenous community organizations and people. Through the implementation of this recruitment strategy, we successfully recruited 18 Indigenous fathers and 4 Two-Spirit parents to our community-engaged project. We learned that social media can be used to enhance recruitment by building community trust, engagement, tailored content for specific audiences, and adaptive strategies guided by data metrics provided by social media platforms. Our journey included several challenges, such as dealing with fraudulent participants, navigating budget and resource constraints, and facing recruitment limitations, which we also describe in detail. Our paper provides essential insights for researchers considering the use of social media as a recruitment tool but we are unsure of how to begin. Health care researchers may find our experience and recommendations helpful for developing and implementing their own effective social media recruitment strategy. Meanwhile, sharing our experience contributes to the broader understanding of the role of social media in participant recruitment. %M 39393066 %R 10.2196/51751 %U https://www.jmir.org/2024/1/e51751 %U https://doi.org/10.2196/51751 %U http://www.ncbi.nlm.nih.gov/pubmed/39393066 %0 Journal Article %@ 2817-1705 %I JMIR Publications %V 3 %N %P e49546 %T Leveraging Temporal Trends for Training Contextual Word Embeddings to Address Bias in Biomedical Applications: Development Study %A Agmon,Shunit %A Singer,Uriel %A Radinsky,Kira %+ Department of Computer Science, Technion—Israel Institute of Technology, CS Taub Building, Haifa, 3200003, Israel, 972 73 378 3897, shunit.agmon@gmail.com %K natural language processing %K NLP %K BERT %K word embeddings %K statistical models %K bias %K algorithms %K gender %D 2024 %7 2.10.2024 %9 Original Paper %J JMIR AI %G English %X Background: Women have been underrepresented in clinical trials for many years. Machine-learning models trained on clinical trial abstracts may capture and amplify biases in the data. Specifically, word embeddings are models that enable representing words as vectors and are the building block of most natural language processing systems. If word embeddings are trained on clinical trial abstracts, predictive models that use the embeddings will exhibit gender performance gaps. Objective: We aim to capture temporal trends in clinical trials through temporal distribution matching on contextual word embeddings (specifically, BERT) and explore its effect on the bias manifested in downstream tasks. Methods: We present TeDi-BERT, a method to harness the temporal trend of increasing women’s inclusion in clinical trials to train contextual word embeddings. We implement temporal distribution matching through an adversarial classifier, trying to distinguish old from new clinical trial abstracts based on their embeddings. The temporal distribution matching acts as a form of domain adaptation from older to more recent clinical trials. We evaluate our model on 2 clinical tasks: prediction of unplanned readmission to the intensive care unit and hospital length of stay prediction. We also conduct an algorithmic analysis of the proposed method. Results: In readmission prediction, TeDi-BERT achieved area under the receiver operating characteristic curve of 0.64 for female patients versus the baseline of 0.62 (P<.001), and 0.66 for male patients versus the baseline of 0.64 (P<.001). In the length of stay regression, TeDi-BERT achieved a mean absolute error of 4.56 (95% CI 4.44-4.68) for female patients versus 4.62 (95% CI 4.50-4.74, P<.001) and 4.54 (95% CI 4.44-4.65) for male patients versus 4.6 (95% CI 4.50-4.71, P<.001). Conclusions: In both clinical tasks, TeDi-BERT improved performance for female patients, as expected; but it also improved performance for male patients. Our results show that accuracy for one gender does not need to be exchanged for bias reduction, but rather that good science improves clinical results for all. Contextual word embedding models trained to capture temporal trends can help mitigate the effects of bias that changes over time in the training data. %M 39357045 %R 10.2196/49546 %U https://ai.jmir.org/2024/1/e49546 %U https://doi.org/10.2196/49546 %U http://www.ncbi.nlm.nih.gov/pubmed/39357045 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e56048 %T Exploring Racial Disparities in Awareness and Perceptions of Oncology Clinical Trials: Cross-Sectional Analysis of Baseline Data From the mychoice Study %A Hoadley,Ariel %A Fleisher,Linda %A Kenny,Cassidy %A Kelly,Patrick JA %A Ma,Xinrui %A Wu,Jingwei %A Guerra,Carmen %A Leader,Amy E %A Alhajji,Mohammed %A D’Avanzo,Paul %A Landau,Zoe %A Bass,Sarah Bauerle %+ Department of Social and Behavioral Sciences, Temple University College of Public Health, 9th Fl, 1301 Cecil B Moore Ave, Philadelphia, PA, 19122, United States, 1 215 204 0377, ariel.hoadley@temple.edu %K oncology clinical trial %K cancer %K decision-making %K racial disparity %K medical mistrust %D 2024 %7 30.9.2024 %9 Original Paper %J JMIR Cancer %G English %X Background: Black/African American adults are underrepresented in oncology clinical trials in the United States, despite efforts at narrowing this disparity. Objective: This study aims to explore differences in how Black/African American oncology patients perceive clinical trials to improve support for the clinical trial participation decision-making process. Methods: As part of a larger randomized controlled trial, a total of 244 adult oncology patients receiving active treatment or follow-up care completed a cross-sectional baseline survey on sociodemographic characteristics, clinical trial knowledge, health literacy, perceptions of cancer clinical trials, patient activation, patient advocacy, health care self-efficacy, decisional conflict, and clinical trial intentions. Self-reported race was dichotomized into Black/African American and non–Black/African American. As appropriate, 2-tailed t tests and chi-square tests of independence were used to examine differences between groups. Results: Black/African American participants had lower clinical trial knowledge (P=.006), lower health literacy (P<.001), and more medical mistrust (all P values <.05) than non–Black/African American participants. While intentions to participate in a clinical trial, if offered, did not vary between Black/African American and non–Black/African American participants, Black/African American participants indicated lower awareness of clinical trials, fewer benefits of clinical trials, and more uncertainty around clinical trial decision-making (all P values <.05). There were no differences for other variables. Conclusions: Despite no significant differences in intent to participate in a clinical trial if offered and high overall trust in individual health care providers among both groups, beliefs persist about barriers to and benefits of clinical trial participation among Black/African American patients. Findings highlight specific ways that education and resources about clinical trials could be tailored to better suit the informational and decision-making needs and preferences of Black/African American oncology patients. %M 39348891 %R 10.2196/56048 %U https://cancer.jmir.org/2024/1/e56048 %U https://doi.org/10.2196/56048 %U http://www.ncbi.nlm.nih.gov/pubmed/39348891 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 11 %N %P e56872 %T User Requirements for an Electronic Patient Recruitment System: Semistructured Interview Analysis After First Implementation in 3 German University Hospitals %A Stein,Alexandra %A Blasini,Romina %A Strantz,Cosima %A Fitzer,Kai %A Gulden,Christian %A Leddig,Torsten %A Hoffmann,Wolfgang %+ Institute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald, Ellernholzstr 1-2, Greifswald, 17487, Germany, 49 383486 ext 22708, alexandra.stein@med.uni-greifswald.de %K patient recruitment system %K clinical trial recruitment support system %K clinical trials %K recruit %K recruitment %K recruiting %K participant %K participants %K research %K digital health %K usability %K interview %K interviews %K qualitative %K experience %K experiences %K attitude %K attitudes %K opinion %K perception %K perceptions %K perspective %K perspectives %K database %K databases %K information system %K information systems %K search %K searches %K searching %K retrieval %D 2024 %7 27.9.2024 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Clinical trials are essential for medical research and medical progress. Nevertheless, trials often fail to reach their recruitment goals. Patient recruitment systems aim to support clinical trials by providing an automated search for eligible patients in the databases of health care institutions like university hospitals. To integrate patient recruitment systems into existing workflows, previous works have assessed user requirements for these tools. In this study, we tested patient recruitment systems KAS+ and recruIT as part of the MIRACUM (Medical Informatics in Research and Care in University Medicine) project. Objective: Our goal was to investigate whether and to what extent the 2 different evaluated tools can meet the requirements resulting from the first requirements analysis, which was performed in 2018-2019. A user survey was conducted to determine whether the tools are usable in practice and helpful for the trial staff. Furthermore, we investigated whether the test phase revealed further requirements for recruitment tools that were not considered in the first place. Methods: We performed semistructured interviews with 10 participants in 3 German university hospitals who used the patient recruitment tools KAS+ or recruIT for at least 1 month with currently recruiting trials. Thereafter, the interviews were transcribed and analyzed by Meyring method. The identified statements of the interviewees were categorized into 5 groups of requirements and sorted by their frequency. Results: The evaluated recruIT and KAS+ tools fulfilled 7 and 11 requirements of the 12 previously identified requirements, respectively. The interviewed participants mentioned the need for different notification schedules, integration into their workflow, different patient characteristics, and pseudonymized screening lists. This resulted in a list of new requirements for the implementation or enhancement of patient recruitment systems. Conclusions: Trial staff report a huge need of support for the identification of eligible trial participants. Moreover, the workflows in patient recruitment differ across trials. For better suitability of the recruitment systems in the workflow of different kinds of trials, we recommend the implementation of an adjustable notification schedule for screening lists, a detailed workflow analysis, broad patient filtering options, and the display of all information needed to identify the persons on the list. Despite criticisms, all participants confirmed to use the patient recruitment systems again. %M 39331958 %R 10.2196/56872 %U https://humanfactors.jmir.org/2024/1/e56872 %U https://doi.org/10.2196/56872 %U http://www.ncbi.nlm.nih.gov/pubmed/39331958 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e58578 %T Trial Factors Associated With Completion of Clinical Trials Evaluating AI: Retrospective Case-Control Study %A Chen,David %A Cao,Christian %A Kloosterman,Robert %A Parsa,Rod %A Raman,Srinivas %+ Department of Radiation Oncology, University of Toronto, 610 University Avenue, Toronto, ON, M5G 2M9, Canada, 1 416 946 4501 ext 2320, srinivas.raman@uhn.ca %K artificial intelligence %K clinical trial %K completion %K AI %K cross-sectional study %K application %K intervention %K trial design %K logistic regression %K Europe %K clinical %K trials testing %K health care %K informatics %K health information %D 2024 %7 23.9.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Evaluation of artificial intelligence (AI) tools in clinical trials remains the gold standard for translation into clinical settings. However, design factors associated with successful trial completion and the common reasons for trial failure are unknown. Objective: This study aims to compare trial design factors of complete and incomplete clinical trials testing AI tools. We conducted a case-control study of complete (n=485) and incomplete (n=51) clinical trials that evaluated AI as an intervention of ClinicalTrials.gov. Methods: Trial design factors, including area of clinical application, intended use population, and intended role of AI, were extracted. Trials that did not evaluate AI as an intervention and active trials were excluded. The assessed trial design factors related to AI interventions included the domain of clinical application related to organ systems; intended use population for patients or health care providers; and the role of AI for different applications in patient-facing clinical workflows, such as diagnosis, screening, and treatment. In addition, we also assessed general trial design factors including study type, allocation, intervention model, masking, age, sex, funder, continent, length of time, sample size, number of enrollment sites, and study start year. The main outcome was the completion of the clinical trial. Odds ratio (OR) and 95% CI values were calculated for all trial design factors using propensity-matched, multivariable logistic regression. Results: We queried ClinicalTrials.gov on December 23, 2023, using AI keywords to identify complete and incomplete trials testing AI technologies as a primary intervention, yielding 485 complete and 51 incomplete trials for inclusion in this study. Our nested propensity-matched, case-control results suggest that trials conducted in Europe were significantly associated with trial completion when compared with North American trials (OR 2.85, 95% CI 1.14-7.10; P=.03), and the trial sample size was positively associated with trial completion (OR 1.00, 95% CI 1.00-1.00; P=.02). Conclusions: Our case-control study is one of the first to identify trial design factors associated with completion of AI trials and catalog study-reported reasons for AI trial failure. We observed that trial design factors positively associated with trial completion include trials conducted in Europe and sample size. Given the promising clinical use of AI tools in health care, our results suggest that future translational research should prioritize addressing the design factors of AI clinical trials associated with trial incompletion and common reasons for study failure. %M 39312296 %R 10.2196/58578 %U https://www.jmir.org/2024/1/e58578 %U https://doi.org/10.2196/58578 %U http://www.ncbi.nlm.nih.gov/pubmed/39312296 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 12 %N %P e55354 %T Using Text Messaging Surveys in General Practice Research to Engage With People From Low-Income Groups: Multi-Methods Study %A Sturgiss,Elizabeth %A Advocat,Jenny %A Barton,Christopher %A Walker,Emma N %A Nielsen,Suzanne %A Wright,Annemarie %A Lam,Tina %A Gunatillaka,Nilakshi %A Oad,Symrin %A Wood,Christopher %+ School of Primary and Allied Health Care, Monash University, Peninsula Campus, Moorooduc Highway, Frankston, 3199, Australia, 61 412233119, liz.sturgiss@monash.edu %K SMS %K data collection %K research methods %K disadvantaged population %K priority populations %K message %K messages %K messaging %K disadvantaged %K underserved %K survey %K surveys %K digital divide %K marginalized %K access %K accessibility %K barrier %K barriers %K smartphone %K smartphones %K digital health %K underrepresented %K data collection %K mobile phone %K short message service %D 2024 %7 5.9.2024 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: SMS text messages through mobile phones are a common means of interpersonal communication. SMS text message surveys are gaining traction in health care and research due to their feasibility and patient acceptability. However, challenges arise in implementing SMS text message surveys, especially when targeting marginalized populations, because of barriers to accessing phones and data as well as communication difficulties. In primary care, traditional surveys (paper-based and online) often face low response rates that are particularly pronounced among disadvantaged groups due to financial limitations, language barriers, and time constraints. Objective: This study aimed to investigate the potential of SMS text message–based patient recruitment and surveys within general practices situated in lower socioeconomic areas. This study was nested within the Reducing Alcohol-Harm in General Practice project that aimed to reduce alcohol-related harm through screening in Australian general practice. Methods: This study follows a 2-step SMS text message data collection process. An initial SMS text message with an online survey link was sent to patients, followed by subsequent surveys every 3 months for consenting participants. Interviews were conducted with the local primary health network organization staff, the participating practice staff, and the clinicians. The qualitative data were analyzed using constructs from the Consolidated Framework for Implementation Research. Results: Out of 6 general practices, 4 were able to send SMS text messages to their patients. The initial SMS text message was sent to 8333 patients and 702 responses (8.2%) were received, most of which were not from a low-income group. This low initial response was in contrast to the improved response rate to the ongoing 3-month SMS text message surveys (55/107, 51.4% at 3 months; 29/67, 43.3% at 6 months; and 44/102, 43.1% at 9 months). We interviewed 4 general practitioners, 4 nurses, and 4 administrative staff from 5 of the different practices. Qualitative data uncovered barriers to engaging marginalized groups including limited smartphone access, limited financial capacity (telephone, internet, and Wi-Fi credit), language barriers, literacy issues, mental health conditions, and physical limitations such as manual dexterity and vision issues. Practice managers and clinicians suggested strategies to overcome these barriers, including using paper-based surveys in trusted spaces, offering assistance during survey completion, and offering honoraria to support participation. Conclusions: While SMS text message surveys for primary care research may be useful for the broader population, additional efforts are required to ensure the representation and involvement of marginalized groups. More intensive methods such as in-person data collection may be more appropriate to capture the voice of low-income groups in primary care research. International Registered Report Identifier (IRRID): RR2-10.3399/BJGPO.2021.0037 %M 39235843 %R 10.2196/55354 %U https://mhealth.jmir.org/2024/1/e55354 %U https://doi.org/10.2196/55354 %U http://www.ncbi.nlm.nih.gov/pubmed/39235843 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e54621 %T Enhancing Patient Selection in Sepsis Clinical Trials Design Through an AI Enrichment Strategy: Algorithm Development and Validation %A Yang,Meicheng %A Zhuang,Jinqiang %A Hu,Wenhan %A Li,Jianqing %A Wang,Yu %A Zhang,Zhongheng %A Liu,Chengyu %A Chen,Hui %+ Jiangsu Provincial Key Laboratory of Critical Care Medicine, Department of Critical Care Medicine, Zhongda Hospital, School of Medicine, Southeast University, No 87, Dingjiaqiao Road, Gulou District, Nanjing, 210009, China, 86 15905162429, 15905162429@163.com %K sepsis %K enrichment strategy %K disease progression trajectories %K artificial intelligence %K predictive modeling %K conformal prediction %D 2024 %7 4.9.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Sepsis is a heterogeneous syndrome, and enrollment of more homogeneous patients is essential to improve the efficiency of clinical trials. Artificial intelligence (AI) has facilitated the identification of homogeneous subgroups, but how to estimate the uncertainty of the model outputs when applying AI to clinical decision-making remains unknown. Objective: We aimed to design an AI-based model for purposeful patient enrollment, ensuring that a patient with sepsis recruited into a trial would still be persistently ill by the time the proposed therapy could impact patient outcome. We also expected that the model could provide interpretable factors and estimate the uncertainty of the model outputs at a customized confidence level. Methods: In this retrospective study, 9135 patients with sepsis requiring vasopressor treatment within 24 hours after sepsis onset were enrolled from Beth Israel Deaconess Medical Center. This cohort was used for model development, and 10-fold cross-validation with 50 repeats was used for internal validation. In total, 3743 patients with sepsis from the eICU Collaborative Research Database were used as the external validation cohort. All included patients with sepsis were stratified based on disease progression trajectories: rapid death, recovery, and persistent ill. A total of 148 variables were selected for predicting the 3 trajectories. Four machine learning algorithms with 3 different setups were used. We estimated the uncertainty of the model outputs using conformal prediction (CP). The Shapley Additive Explanations method was used to explain the model. Results: The multiclass gradient boosting machine was identified as the best-performing model with good discrimination and calibration performance in both validation cohorts. The mean area under the receiver operating characteristic curve with SD was 0.906 (0.018) for rapid death, 0.843 (0.008) for recovery, and 0.807 (0.010) for persistent ill in the internal validation cohort. In the external validation cohort, the mean area under the receiver operating characteristic curve (SD) was 0.878 (0.003) for rapid death, 0.764 (0.008) for recovery, and 0.696 (0.007) for persistent ill. The maximum norepinephrine equivalence, total urine output, Acute Physiology Score III, mean systolic blood pressure, and the coefficient of variation of oxygen saturation contributed the most. Compared to the model without CP, using the model with CP at a mixed confidence approach reduced overall prediction errors by 27.6% (n=62) and 30.7% (n=412) in the internal and external validation cohorts, respectively, as well as enabled the identification of more potentially persistent ill patients. Conclusions: The implementation of our model has the potential to reduce heterogeneity and enroll more homogeneous patients in sepsis clinical trials. The use of CP for estimating the uncertainty of the model outputs allows for a more comprehensive understanding of the model’s reliability and assists in making informed decisions based on the predicted outcomes. %M 39231425 %R 10.2196/54621 %U https://www.jmir.org/2024/1/e54621 %U https://doi.org/10.2196/54621 %U http://www.ncbi.nlm.nih.gov/pubmed/39231425 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e47882 %T The Digital Platform and Its Emerging Role in Decentralized Clinical Trials %A Copland,Rachel R %A Hanke,Sten %A Rogers,Amy %A Mpaltadoros,Lampros %A Lazarou,Ioulietta %A Zeltsi,Alexandra %A Nikolopoulos,Spiros %A MacDonald,Thomas M %A Mackenzie,Isla S %+ MEMO Research, School of Medicine, University of Dundee, Ninewells Hospital and Medical School, Dundee, DD1 9SY, United Kingdom, 44 1382388380, rcopland001@dundee.ac.uk %K decentralized clinical trials %K digital platform %K digitalization %K clinical trials %K mobile phone %D 2024 %7 3.9.2024 %9 Viewpoint %J J Med Internet Res %G English %X Decentralized clinical trials (DCTs) are becoming increasingly popular. Digital clinical trial platforms are software environments where users complete designated clinical trial tasks, providing investigators and trial participants with efficient tools to support trial activities and streamline trial processes. In particular, digital platforms with a modular architecture lend themselves to DCTs, where individual trial activities can correspond to specific platform modules. While design features can allow users to customize their platform experience, the real strengths of digital platforms for DCTs are enabling centralized data capture and remote monitoring of trial participants and in using digital technologies to streamline workflows and improve trial management. When selecting a platform for use in a DCT, sponsors and investigators must consider the specific trial requirements. All digital platforms are limited in their functionality and technical capabilities. Integrating additional functional modules into a central platform may solve these challenges, but few commercial platforms are open to integrating third-party components. The lack of common data standardization protocols for clinical trials will likely limit the development of one-size-fits-all digital platforms for DCTs. This viewpoint summarizes the current role of digital platforms in supporting decentralized trial activities, including a discussion of the potential benefits and challenges of digital platforms for investigators and participants. We will highlight the role of the digital platform in the development of DCTs and emphasize where existing technology is functionally limiting. Finally, we will discuss the concept of the ideal fully integrated and unified DCT and the obstacles developers must address before it can be realized. %M 39226549 %R 10.2196/47882 %U https://www.jmir.org/2024/1/e47882 %U https://doi.org/10.2196/47882 %U http://www.ncbi.nlm.nih.gov/pubmed/39226549 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e54450 %T Strategies for Identifying and Recruiting Women at High Risk for Breast Cancer for Research Outside of Clinical Settings: Observational Study %A Conley,Claire C %A Rodriguez,Jennifer D %A McIntyre,McKenzie %A Niell,Bethany L %A O'Neill,Suzanne C %A Vadaparampil,Susan T %+ Department of Oncology, Georgetown University, 2115 Wisconsin Ave NW, Suite 300, Washington, DC, 20007, United States, 1 2026875086, claire.conley@georgetown.edu %K breast cancer %K high-risk populations %K risk management %K recruitment %K woman %K women %K high risk %K observational study %K cross-sectional %K Facebook %K Twitter %K flyer %K flyers %K community events %K community event %K genetic mutation %D 2024 %7 2.9.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Research is needed to understand and address barriers to risk management for women at high (≥20% lifetime) risk for breast cancer, but recruiting this population for research studies is challenging. Objective: This paper compares a variety of recruitment strategies used for a cross-sectional, observational study of high-risk women. Methods: Eligible participants were assigned female at birth, aged 25-85 years, English-speaking, living in the United States, and at high risk for breast cancer as defined by the American College of Radiology. Individuals were excluded if they had a personal history of breast cancer, prior bilateral mastectomy, medical contraindications for magnetic resonance imaging, or were not up-to-date on screening mammography per American College of Radiology guidelines. Participants were recruited from August 2020 to January 2021 using the following mechanisms: targeted Facebook advertisements, Twitter posts, ResearchMatch (a web-based research recruitment database), community partner promotions, paper flyers, and community outreach events. Interested individuals were directed to a secure website with eligibility screening questions. Participants self-reported method of recruitment during the eligibility screening. For each recruitment strategy, we calculated the rate of eligible respondents and completed surveys, costs per eligible participant, and participant demographics. Results: We received 1566 unique responses to the eligibility screener. Participants most often reported recruitment via Facebook advertisements (724/1566, 46%) and ResearchMatch (646/1566, 41%). Community partner promotions resulted in the highest proportion of eligible respondents (24/46, 52%), while ResearchMatch had the lowest proportion of eligible respondents (73/646, 11%). Word of mouth was the most cost-effective recruitment strategy (US $4.66 per completed survey response) and paper flyers were the least cost-effective (US $1448.13 per completed survey response). The demographic characteristics of eligible respondents varied by recruitment strategy: Twitter posts and community outreach events resulted in the highest proportion of Hispanic or Latina women (1/4, 25% and 2/6, 33%, respectively), and community partner promotions resulted in the highest proportion of non-Hispanic Black women (4/24, 17%). Conclusions: Although recruitment strategies varied in their yield of study participants, results overall support the feasibility of identifying and recruiting women at high risk for breast cancer outside of clinical settings. Researchers must balance the associated costs and participant yield of various recruitment strategies in planning future studies focused on high-risk women. %M 39222344 %R 10.2196/54450 %U https://www.jmir.org/2024/1/e54450 %U https://doi.org/10.2196/54450 %U http://www.ncbi.nlm.nih.gov/pubmed/39222344 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e54034 %T Acceptance of Social Media Recruitment for Clinical Studies Among Patients With Hepatitis B: Mixed Methods Study %A Willem,Theresa %A Zimmermann,Bettina M %A Matthes,Nina %A Rost,Michael %A Buyx,Alena %+ Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Ismaninger Str. 22, Munich, 81675, Germany, 49 89 4140 4041, bettina.zimmermann@tum.de %K Facebook %K Twitter %K social media %K clinical trial %K enrollment %K health technology acceptance %K ethics %K infectious diseases %K privacy %K data protection %K stigma %K discrimination %D 2024 %7 26.8.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Social media platforms are increasingly used to recruit patients for clinical studies. Yet, patients’ attitudes regarding social media recruitment are underexplored. Objective: This mixed methods study aims to assess predictors of the acceptance of social media recruitment among patients with hepatitis B, a patient population that is considered particularly vulnerable in this context. Methods: Using a mixed methods approach, the hypotheses for our survey were developed based on a qualitative interview study with 6 patients with hepatitis B and 30 multidisciplinary experts. Thematic analysis was applied to qualitative interview analysis. For the cross-sectional survey, we additionally recruited 195 patients with hepatitis B from 3 clinical centers in Germany. Adult patients capable of judgment with a hepatitis B diagnosis who understood German and visited 1 of the 3 study centers during the data collection period were eligible to participate. Data analysis was conducted using SPSS (version 28; IBM Corp), including descriptive statistics and regression analysis. Results: On the basis of the qualitative interview analysis, we hypothesized that 6 factors were associated with acceptance of social media recruitment: using social media in the context of hepatitis B (hypothesis 1), digital literacy (hypothesis 2), interest in clinical studies (hypothesis 3), trust in nonmedical (hypothesis 4a) and medical (hypothesis 4b) information sources, perceiving the hepatitis B diagnosis as a secret (hypothesis 5a), attitudes toward data privacy in the social media context (hypothesis 5b), and perceived stigma (hypothesis 6). Regression analysis revealed that the higher the social media use for hepatitis B (hypothesis 1), the higher the interest in clinical studies (hypothesis 3), the more trust in nonmedical information sources (hypothesis 4a), and the less secrecy around a hepatitis B diagnosis (hypothesis 5a), the higher the acceptance of social media as a recruitment tool for clinical hepatitis B studies. Conclusions: This mixed methods study provides the first quantitative insights into social media acceptance for clinical study recruitment among patients with hepatitis B. The study was limited to patients with hepatitis B in Germany but sets out to be a reference point for future studies assessing the attitudes toward and acceptance of social media recruitment for clinical studies. Such empirical inquiries can facilitate the work of researchers designing clinical studies as well as ethics review boards in balancing the risks and benefits of social media recruitment in a context-specific manner. %M 39186322 %R 10.2196/54034 %U https://www.jmir.org/2024/1/e54034 %U https://doi.org/10.2196/54034 %U http://www.ncbi.nlm.nih.gov/pubmed/39186322 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e38189 %T Recruitment in Appalachian, Rural and Older Adult Populations in an Artificial Intelligence World: Study Using Human-Mediated Follow-Up %A Milliken,Tabitha %A Beiler,Donielle %A Hoffman,Samantha %A Olenginski,Ashlee %A Troiani,Vanessa %+ Research Institute, Geisinger, 100 N. Academy Ave, Danville, PA, 17821, United States, 1 215 681 1733, vtroiani@geisinger.edu %K telecommunication %K enrollment rate %K Northern Appalachia %K web-based %K aging %K recruitment %K rural %D 2024 %7 22.8.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Participant recruitment in rural and hard-to-reach (HTR) populations can present unique challenges. These challenges are further exacerbated by the need for low-cost recruiting, which often leads to use of web-based recruitment methods (eg, email, social media). Despite these challenges, recruitment strategy statistics that support effective enrollment strategies for underserved and HTR populations are underreported. This study highlights how a recruitment strategy that uses email in combination with follow-up, mostly phone calls and email reminders, produced a higher-than-expected enrollment rate that includes a diversity of participants from rural, Appalachian populations in older age brackets and reports recruitment and demographic statistics within a subset of HTR populations. Objective: This study aims to provide evidence that a recruitment strategy that uses a combination of email, telephonic, and follow-up recruitment strategies increases recruitment rates in various HTR populations, specifically in rural, older, and Appalachian populations. Methods: We evaluated the overall enrollment rate of 1 recruitment arm of a larger study that aims to understand the relationship between genetics and substance use disorders. We evaluated the enrolled population’s characteristics to determine recruitment success of a combined email and follow-up recruitment strategy, and the enrollment rate of HTR populations. These characteristics included (1) enrollment rate before versus after follow-up; (2) zip code and county of enrollee to determine rural or urban and Appalachian status; (3) age to verify recruitment in all eligible age brackets; and (4) sex distribution among age brackets and rural or urban status. Results: The email and follow-up arm of the study had a 17.4% enrollment rate. Of the enrolled participants, 76.3% (4602/6030) lived in rural counties and 23.7% (1428/6030) lived in urban counties in Pennsylvania. In addition, of patients enrolled, 98.7% (5956/6030) were from Appalachian counties and 1.3% (76/6030) were from non-Appalachian counties. Patients from rural Appalachia made up 76.2% (4603/6030) of the total rural population. Enrolled patients represented all eligible age brackets from ages 20 to 75 years, with the 60-70 years age bracket having the most enrollees. Females made up 72.5% (4371/6030) of the enrolled population and males made up 27.5% (1659/6030) of the population. Conclusions: Results indicate that a web-based recruitment method with participant follow-up, such as a phone call and email follow-up, increases enrollment numbers more than web-based methods alone for rural, Appalachian, and older populations. Adding a humanizing component, such as a live person phone call, may be a key element needed to establish trust and encourage patients from underserved and rural areas to enroll in studies via web-based recruitment methods. Supporting statistics on this recruitment strategy should help researchers identify whether this strategy may be useful in future studies and HTR populations. %M 39173153 %R 10.2196/38189 %U https://formative.jmir.org/2024/1/e38189 %U https://doi.org/10.2196/38189 %U http://www.ncbi.nlm.nih.gov/pubmed/39173153 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e49600 %T Using Short-Form Videos to Get Clinical Trial Newcomers to Sign Up: Message-Testing Experiment %A Hu,Sisi %A Kirkpatrick,Ciera E %A Lee,Namyeon %A Hong,Yoorim %A Lee,Sungkyoung %A Hinnant,Amanda %+ School of Journalism and Strategic Media, University of Arkansas, 129 Kimpel Hall, 280 N. McIlroy Avenue, Fayetteville, AR, 72701, United States, 1 479 575 6717, sisih@uark.edu %K clinical trial recruitment %K TikTok %K source credibility %K framing %K psychological barriers %K logistical barriers %K integrated behavioral model %K short-form videos %K social media use %K clinical trial %K recruitment %D 2024 %7 15.8.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Recruiting participants for clinical trials poses challenges. Major barriers to participation include psychological factors (eg, fear and mistrust) and logistical constraints (eg, transportation, cost, and scheduling). The strategic design of clinical trial messaging can help overcome these barriers. While strategic communication can be done through various channels (eg, recruitment advertisements), health care providers on the internet have been found to be key sources for communicating clinical trial information to US adults in the social media era. Objective: This study aims to examine how communication source (ie, medical doctors and peers) and message framing of TikTok videos (ie, psychological and logistical framing) influence clinical trial–related attitudes, perceptions, and sign-up behaviors under the guidance of the integrated behavioral model. Methods: This study used a 2 (source: doctor vs peer) × 2 (framing: psychological vs logistical) between-participant factorial design web-based experiment targeting adults in the United States who had never participated in clinical trials (ie, newcomers). A Qualtrics panel was used to recruit and compensate the study respondents (n=561). Participants viewed short-form videos with doctors or peers, using psychological or logistical framing. The main outcome measures included perceived source credibility, self-efficacy, attitude toward clinical trial participation, behavioral intention, and sign-up behavior. Structural equation modeling was used to analyze the direct and indirect effects of message factors on the outcome variables. Source (doctor=1; peer=0) and framing (psychological=1; logistical=0) were dummy-coded. Results: Doctor-featured messages led to greater perceived source credibility (β=.31, P<.001), leading to greater self-efficacy (95% CI 0.13-0.30), which in turn enhanced behavioral intention (95% CI 0.12-0.29) and clinical trial sign-up behavior (95% CI 0.02-0.04). Logistical barrier–framed messages led to greater self-efficacy (β=–.09, P=.02), resulting in higher intention to participate in clinical trials (95% CI –0.38 to –0.03) and improved sign-up behavior (95% CI –0.06 to –0.004). Logistical barrier–framed messages were also directly associated with an increased likelihood of signing up for a clinical trial (β=–.08, P=.03). The model accounted for 21% of the variance in clinical trial sign-up behavior. Attitude did not significantly affect behavioral intention in this study (β=.08, P=.14), and psychological and logistical barrier–framed messages did not significantly differ in attitudes toward clinical trial participation (β=–.04, P=.09). Conclusions: These findings advance our understanding of how people process popular message characteristics in short-form videos and lend practical guidance for communicators. We encourage medical professionals to consider short-form video sites (eg, TikTok and Instagram Reels) as effective tools for discussing clinical trials and participation opportunities. Specifically, featuring doctors discussing efforts to reduce logistical barriers is recommended. Our measuring of actual behavior as an outcome is a rare and noteworthy contribution to this research. %M 39146532 %R 10.2196/49600 %U https://www.jmir.org/2024/1/e49600 %U https://doi.org/10.2196/49600 %U http://www.ncbi.nlm.nih.gov/pubmed/39146532 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e48516 %T Measuring Relationship Influences on Romantic Couples’ Cancer-Related Behaviors During the COVID-19 Pandemic: Protocol for a Longitudinal Online Study of Dyads and Cancer Survivors %A Bowers,Jennifer M %A Huelsnitz,Chloe O %A Dwyer,Laura A %A Gibson,Laurel P %A Agurs-Collins,Tanya %A Ferrer,Rebecca A %A Acevedo,Amanda M %+ Behavioral Research Program, National Cancer Institute, National Institutes of Health, 9609 Medical Center Dr, Rockville, MD, 20850, United States, 1 2402765478, amanda.acevedo@nih.gov %K cancer prevention %K COVID-19 %K risk perceptions %K dyads %K romantic relationships %K cancer %K oncology %K survivor %K survivors %K dyad %K spouse %K spousal %K partner %K health behavior %K health behaviors %K cohabiting %K cohabit %K study design %K recruit %K recruitment %K methodology %K methods %K enrol %K enrolment %K enroll %K enrollment %D 2024 %7 31.7.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Research has established the effects of romantic relationships on individuals’ morbidity and mortality. However, the interplay between relationship functioning, affective processes, and health behaviors has been relatively understudied. During the COVID-19 pandemic, relational processes may influence novel health behaviors such as social distancing and masking. Objective: We describe the design, recruitment, and methods of the relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study. This study was developed to understand how relational and affective processes influence romantic partners’ engagement in cancer prevention behaviors as well as health behaviors introduced or exacerbated by the COVID-19 pandemic. Methods: The relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study used online survey methods to recruit and enroll 2 cohorts of individuals involved in cohabiting romantic relationships, including 1 cohort of dyads (n=223) and 1 cohort of cancer survivors (n=443). Survey assessments were completed over 2 time points that were 5.57 (SD 3.14) weeks apart on average. Health behaviors assessed included COVID-19 vaccination and social distancing, physical activity, diet, sleep, alcohol use, and smoking behavior. We also examined relationship factors, psychological distress, and household chaos. Results: Data collection occurred between October 2021 and August 2022. During that time, a total of 926 participants were enrolled, of which about two-thirds were from the United Kingdom (n=622, 67.8%) and one-third were from the United States (n=296, 32.2%); about two-thirds were married (n=608, 66.2%) and one-third were members of unmarried couples (n=294, 32%). In cohorts 1 and 2, the mean age was about 34 and 50, respectively. Out of 478 participants in cohort 1, 19 (4%) identified as Hispanic or Latino/a, 79 (17%) as non-Hispanic Asian, 40 (9%) as non-Hispanic Black or African American, and 306 (64%) as non-Hispanic White; 62 (13%) participants identified their sexual orientation as bisexual or pansexual, 359 (75.1%) as heterosexual or straight, and 53 (11%) as gay or lesbian. In cohort 2, out of 440 participants, 13 (3%) identified as Hispanic or Latino/a, 8 (2%) as non-Hispanic Asian, 5 (1%) as non-Hispanic Black or African American, and 398 (90.5%) as non-Hispanic White; 41 (9%) participants identified their sexual orientation as bisexual or pansexual, 384 (87.3%) as heterosexual or straight, and 13 (3%) as gay or lesbian. The overall enrollment rate for individuals was 66.14% and the overall completion rate was 80.08%. Conclusions: We discuss best practices for collecting online survey data for studies examining relationships and health, challenges related to the COVID-19 pandemic, recruitment of underrepresented populations, and enrollment of dyads. Recommendations include conducting pilot studies, allowing for extra time in the data collection timeline for marginalized or underserved populations, surplus screening to account for expected attrition within dyads, as well as planning dyad-specific data quality checks. International Registered Report Identifier (IRRID): DERR1-10.2196/48516 %M 39083795 %R 10.2196/48516 %U https://www.researchprotocols.org/2024/1/e48516 %U https://doi.org/10.2196/48516 %U http://www.ncbi.nlm.nih.gov/pubmed/39083795 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e54867 %T Comparison of the Response to an Electronic Versus a Traditional Informed Consent Procedure in Terms of Clinical Patient Characteristics: Observational Study %A Zondag,Anna G M %A Hollestelle,Marieke J %A van der Graaf,Rieke %A Nathoe,Hendrik M %A van Solinge,Wouter W %A Bots,Michiel L %A Vernooij,Robin W M %A Haitjema,Saskia %A , %+ Central Diagnostic Laboratory, University Medical Center Utrecht, Utrecht University, Heidelberglaan 100, Utrecht, 3584 CX, Netherlands, 31 631117922, a.g.m.zondag@umcutrecht.nl %K informed consent %K learning health care system %K e-consent %K cardiovascular risk management %K digital health %K research ethics %D 2024 %7 11.7.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Electronic informed consent (eIC) is increasingly used in clinical research due to several benefits including increased enrollment and improved efficiency. Within a learning health care system, a pilot was conducted with an eIC for linking data from electronic health records with national registries, general practitioners, and other hospitals. Objective: We evaluated the eIC pilot by comparing the response to the eIC with the former traditional paper-based informed consent (IC). We assessed whether the use of eIC resulted in a different study population by comparing the clinical patient characteristics between the response categories of the eIC and former face-to-face IC procedure. Methods: All patients with increased cardiovascular risk visiting the University Medical Center Utrecht, the Netherlands, were eligible for the learning health care system. From November 2021 to August 2022, an eIC was piloted at the cardiology outpatient clinic. Prior to the pilot, a traditional face-to-face paper-based IC approach was used. Responses (ie, consent, no consent, or nonresponse) were assessed and compared between the eIC and face-to-face IC cohorts. Clinical characteristics of consenting and nonresponding patients were compared between and within the eIC and the face-to-face cohorts using multivariable regression analyses. Results: A total of 2254 patients were included in the face-to-face IC cohort and 885 patients in the eIC cohort. Full consent was more often obtained in the eIC than in the face-to-face cohort (415/885, 46.9% vs 876/2254, 38.9%, respectively). Apart from lower mean hemoglobin in the full consent group of the eIC cohort (8.5 vs 8.8; P=.0021), the characteristics of the full consenting patients did not differ between the eIC and face-to-face IC cohorts. In the eIC cohort, only age differed between the full consent and the nonresponse group (median 60 vs 56; P=.0002, respectively), whereas in the face-to-face IC cohort, the full consent group seemed healthier (ie, higher hemoglobin, lower glycated hemoglobin [HbA1c], lower C-reactive protein levels) than the nonresponse group. Conclusions: More patients provided full consent using an eIC. In addition, the study population remained broadly similar. The face-to-face IC approach seemed to result in a healthier study population (ie, full consenting patients) than the patients without IC, while in the eIC cohort, the characteristics between consent groups were comparable. Thus, an eIC may lead to a better representation of the target population, increasing the generalizability of results. %M 38990640 %R 10.2196/54867 %U https://www.jmir.org/2024/1/e54867 %U https://doi.org/10.2196/54867 %U http://www.ncbi.nlm.nih.gov/pubmed/38990640 %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 e50240 %T The Impact of Incentives on Data Collection for Online Surveys: Social Media Recruitment Study %A Sobolewski,Jessica %A Rothschild,Allie %A Freeman,Andrew %+ RTI International, 3040 E Cornwallis Road, Research Triangle Park, NC, 27709, United States, 1 203 770 3115, jsobolewski@rti.org %K social media %K online survey recruitment %K incentive %K experiment %K online surveys %K Facebook %K Instagram %K data collection %K users %K cost %K social media recruitment %K survey %D 2024 %7 4.7.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: The use of targeted advertisements on social media platforms (eg, Facebook and Instagram) has become increasingly popular for recruiting participants for online survey research. Many of these surveys offer monetary incentives for survey completion in the form of gift cards; however, little is known about whether the incentive amount impacts the cost, speed, and quality of data collection. Objective: This experiment addresses this gap in the literature by examining how different incentives in paid advertising campaigns on Instagram for completing a 10-minute online survey influence the response rate, recruitment advertising cost, data quality, and length of data collection. Methods: This experiment tested three incentive conditions using three Instagram campaigns that were each allocated a US $1400 budget to spend over a maximum of 4 days; ads targeted users aged 15-24 years in three nonadjacent designated market areas of similar size to avoid overlapping audiences. Four ad creatives were designed for each campaign; all ads featured the same images and text, but the incentive amount varied: no incentive, US $5 gift card, and US $15 gift card. All ads had a clickable link that directed users to an eligibility screener and a 10-minute online survey, if eligible. Each campaign ran for either the full allotted time (4 days) or until there were 150 total survey completes, prior to data quality checks for fraud. Results: The US $15 incentive condition resulted in the quickest and cheapest data collection, requiring 17 hours and ad spending of US $338.64 to achieve 142 survey completes. The US $5 condition took more than twice as long (39 hours) and cost US $864.33 in ad spending to achieve 148 survey completes. The no-incentive condition ran for 60 hours, spending nearly the full budget (US $1398.23), and achieved only 24 survey completes. The US $15 and US $5 incentive conditions had similar levels of fraudulent respondents, whereas the no-incentive condition had no fraudulent respondents. The completion rate for the US $15 and US $5 incentive conditions were 93.4% (155/166) and 89.8% (149/166), respectively, while the completion rate for the no-incentive condition was 43.6% (24/55). Conclusions: Overall, we found that a higher incentive resulted in quicker data collection, less money spent on ads, and higher response rates, despite some fraudulent cases that had to be dropped from the sample. However, when considering the total incentive amounts in addition to the ad spending, a US $5 incentive appeared to be the most cost-effective data collection option. Other costs associated with running a campaign for a longer period should also be considered. A longer experiment is warranted to determine whether fraud varies over time across conditions. %M 38963924 %R 10.2196/50240 %U https://formative.jmir.org/2024/1/e50240 %U https://doi.org/10.2196/50240 %U http://www.ncbi.nlm.nih.gov/pubmed/38963924 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e52281 %T Combating Fraudulent Participation in Urban American Indian and Alaska Native Virtual Health Research: Protocol for Increasing Data Integrity in Online Research (PRIOR) %A Reed,Nicole D %A Bull,Sheana %A Shrestha,Umit %A Sarche,Michelle %A Kaufman,Carol E %+ Centers for American Indian and Alaska Native Health, Colorado School of Public Health, University of Colorado Anschutz Medical Campus, Mail Stop F800, 13055 East 17th Ave, Aurora, CO, 80045, United States, 1 3037240177, nicole.d.reed@cuanschutz.edu %K fraudulent survey participation %K online survey research %K American Indian and Alaska Native %K data integrity %K health research %K research trust %K online survey %K case study %K randomized control trial %K RCT %K social media %K recruitment %K young women %K women %K American Indian %K Native Americans %K Native American %K fraudulent %K data privacy %D 2024 %7 13.6.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: While the advantages of using the internet and social media for research recruitment are well documented, the evolving online environment also enhances motivations for misrepresentation to receive incentives or to “troll” research studies. Such fraudulent assaults can compromise data integrity, with substantial losses in project time; money; and especially for vulnerable populations, research trust. With the rapid advent of new technology and ever-evolving social media platforms, it has become easier for misrepresentation to occur within online data collection. This perpetuation can occur by bots or individuals with malintent, but careful planning can help aid in filtering out fraudulent data. Objective: Using an example with urban American Indian and Alaska Native young women, this paper aims to describe PRIOR (Protocol for Increasing Data Integrity in Online Research), which is a 2-step integration protocol for combating fraudulent participation in online survey research. Methods: From February 2019 to August 2020, we recruited participants for formative research preparatory to an online randomized control trial of a preconceptual health program. First, we described our initial protocol for preventing fraudulent participation, which proved to be unsuccessful. Then, we described modifications we made in May 2020 to improve the protocol performance and the creation of PRIOR. Changes included transferring data collection platforms, collecting embedded geospatial variables, enabling timing features within the screening survey, creating URL links for each method or platform of data collection, and manually confirming potentially eligible participants’ identifying information. Results: Before the implementation of PRIOR, the project experienced substantial fraudulent attempts at study enrollment, with less than 1% (n=6) of 1300 screened participants being identified as truly eligible. With the modified protocol, of the 461 individuals who completed a screening survey, 381 did not meet the eligibility criteria assessed on the survey. Of the 80 that did, 25 (31%) were identified as ineligible via PRIOR. A total of 55 (69%) were identified as eligible and verified in the protocol and were enrolled in the formative study. Conclusions: Fraudulent surveys compromise study integrity, validity of the data, and trust among participant populations. They also deplete scarce research resources including respondent compensation and personnel time. Our approach of PRIOR to prevent online misrepresentation in data was successful. This paper reviews key elements regarding fraudulent data participation in online research and demonstrates why enhanced protocols to prevent fraudulent data collection are crucial for building trust with vulnerable populations. Trial Registration: ClinicalTrials.gov NCT04376346; https://www.clinicaltrials.gov/study/NCT04376346 International Registered Report Identifier (IRRID): DERR1-10.2196/52281 %M 38869930 %R 10.2196/52281 %U https://www.researchprotocols.org/2024/1/e52281 %U https://doi.org/10.2196/52281 %U http://www.ncbi.nlm.nih.gov/pubmed/38869930 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e50650 %T Detecting and Understanding Social Influence During Drinking Situations: Protocol for a Bluetooth-Based Sensor Feasibility and Acceptability Study %A Jackson,Kristina %A Meisel,Matthew %A Sokolovsky,Alexander %A Chen,Katie %A Barnett,Nancy %+ Center for Alcohol and Addiction Studies, Department of Behavioral and Social Sciences, Brown University, Box G-S121-4, Providence, RI, 02912, United States, 1 (401) 863 6617, kristina_jackson@brown.edu %K Bluetooth technology %K passive sensing %K social influence %K alcohol use %K ecological momentary assessment %K social network %K feasibility %K acceptability %K mobile phone %D 2024 %7 6.6.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: High-risk alcohol consumption among young adults frequently occurs in the presence of peers who are also drinking. A high-risk drinking situation may consist of particular social network members who have a primary association with drinking. Fine-grained approaches such as ecological momentary assessment (EMA) are growing in popularity for studying real-time social influence, but studies using these approaches exclusively rely on participant self-report. Passive indicators of peer presence using Bluetooth-based technology to detect real-time interactions have the potential to assist in the development of just-in-time interventions. Objective: This study seeks to examine the feasibility and acceptability of using a Bluetooth-based sensor and smartphone app to measure social contact in real-world drinking situations. Methods: Young adults (N=20) who drink heavily and report social drinking will be recruited from the community to participate in a 3-week EMA study. Using a social network interview, index participants will identify and recruit 3 of their friends to carry a Bluetooth beacon. Participants will complete a series of EMA reports on their own personal Android devices including random reports; morning reports; first-drink reports; and signal-contingent reports, which are triggered following the detection of a beacon carried by a peer participant. EMA will assess alcohol use and characteristics of the social environment, including who is nearby and who is drinking. For items about peer proximity and peer drinking, a customized peer list will be presented to participants. Feedback about the study protocol will be ascertained through weekly contact with both index and peer participants, followed by a qualitative interview at the end of the study. We will examine the feasibility and acceptability of recruitment, enrollment of participants and peers, and retention. Feasibility will be determined using indexes of eligibility, enrollment, and recruitment. Acceptability will be determined through participant enrollment and retention, protocol compliance, and participant-reported measures of acceptability. Feasibility and acceptability for peer participants will be informed by enrollment rates, latency to enrollment, compliance with carrying the beacon, and self-reported reasons for compliance or noncompliance with beacon procedures. Finally, EMA data about peer proximity and peer drinking will support the validity of the peer selection process. Results: Participant recruitment began in February 2023, and enrollment was completed in December 2023. Results will be reported in 2025. Conclusions: The protocol allows us to examine the feasibility and acceptability of a Bluetooth-based sensor for the detection of social contact between index participants and their friends, including social interactions during real-world drinking situations. Data from this study will inform just-in-time adaptive interventions seeking to address drinking in the natural environment by providing personalized feedback about a high-risk social context and alerting an individual that they are in a potentially unsafe situation. International Registered Report Identifier (IRRID): DERR1-10.2196/50650 %M 38842927 %R 10.2196/50650 %U https://www.researchprotocols.org/2024/1/e50650 %U https://doi.org/10.2196/50650 %U http://www.ncbi.nlm.nih.gov/pubmed/38842927 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e51530 %T Evaluating the Problem of Fraudulent Participants in Health Care Research: Multimethod Pilot Study %A Kumarasamy,Vithusa %A Goodfellow,Nicole %A Ferron,Era Mae %A Wright,Amy L %+ Lawrence S Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Toronto, ON, Canada, 1 416 978 0695, amyl.wright@utoronto.ca %K fraudulent participants %K threats to data integrity %K online recruitment %K multimethod study %K health care research %K bots %K social media %D 2024 %7 4.6.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: The shift toward online recruitment methods, accelerated by the COVID-19 pandemic, has brought to the forefront the growing concern of encountering fraudulent participants in health care research. The increasing prevalence of this issue poses a serious threat to the reliability and integrity of research data and subsequent findings. Objective: This study aims to explore the experiences of health care researchers (HCRs) who have encountered fraudulent participants while using online recruitment methods and platforms. The primary objective was to gain insights into how researchers detect and mitigate fraudulent behavior in their work and provide prevention recommendations. Methods: A multimethod sequential design was used for this pilot study, comprising a quantitative arm involving a web-based survey followed by a qualitative arm featuring semistructured interviews. The qualitative description approach framed the qualitative arm of the study. Sample sizes for the quantitative and qualitative arms were based on pragmatic considerations that in part stemmed from encountering fraudulent participants in a concurrent study. Content analysis was used to analyze open-ended survey questions and interview data. Results: A total of 37 HCRs participated, with 35% (13/37) of them engaging in qualitative interviews. Online platforms such as Facebook, email, Twitter (subsequently rebranded X), and newsletters were the most used methods for recruitment. A total of 84% (31/37) of participants indicated that fraudulent participation occurred in studies that mentioned incentives in their recruitment communications, with 71% (26/37) of HCRs offering physical or electronic gift cards as incentives. Researchers identified several indicators of suspicious behavior, including email surges, discrepancies in contact or personal information, geographical inconsistencies, and suspicious responses to survey questions. HCRs emphasized the need for a comprehensive screening protocol that extends beyond eligibility checks and is seamlessly integrated into the study protocol, grant applications, and research ethics board submissions. Conclusions: This study sheds light on the intricate and pervasive problem of fraudulent participation in health care research using online recruitment methods. The findings underscore the importance of vigilance and proactivity among HCRs in identifying, preventing, and addressing fraudulent behavior. To effectively tackle this challenge, researchers are encouraged to develop a comprehensive prevention strategy and establish a community of practice, facilitating real-time access to solutions and support and the promotion of ethical research practices. This collaborative approach will enable researchers to effectively address the issue of fraudulent participation, ensuring the conduct of high-quality and ethically sound research in the digital age. %M 38833292 %R 10.2196/51530 %U https://formative.jmir.org/2024/1/e51530 %U https://doi.org/10.2196/51530 %U http://www.ncbi.nlm.nih.gov/pubmed/38833292 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e56218 %T Lessons Learned From a Sequential Mixed-Mode Survey Design to Recruit and Collect Data From Case-Control Study Participants: Formative Evaluation %A Tran,Amanda D %A White,Alice E %A Torok,Michelle R %A Jervis,Rachel H %A Albanese,Bernadette A %A Scallan Walter,Elaine J %+ Department of Epidemiology, Colorado School of Public Health, University of Colorado, 13001 East 17th Place, 3rd Floor, Mail Stop B119, Aurora, CO, 80045, United States, 1 303 724 5162, elaine.scallanwalter@cuanschutz.edu %K case-control studies %K mixed-mode design %K epidemiologic study methods %K web-based survey %K telephone interview %K public health %K outbreak preparedness %K COVID-19 %K survey %K recruitment %K epidemiology %K methods %D 2024 %7 27.5.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Sequential mixed-mode surveys using both web-based surveys and telephone interviews are increasingly being used in observational studies and have been shown to have many benefits; however, the application of this survey design has not been evaluated in the context of epidemiological case-control studies. Objective: In this paper, we discuss the challenges, benefits, and limitations of using a sequential mixed-mode survey design for a case-control study assessing risk factors during the COVID-19 pandemic. Methods: Colorado adults testing positive for SARS-CoV-2 were randomly selected and matched to those with a negative SARS-CoV-2 test result from March to April 2021. Participants were first contacted by SMS text message to complete a self-administered web-based survey asking about community exposures and behaviors. Those who did not respond were contacted for a telephone interview. We evaluated the representativeness of survey participants to sample populations and compared sociodemographic characteristics, participant responses, and time and resource requirements by survey mode using descriptive statistics and logistic regression models. Results: Of enrolled case and control participants, most were interviewed by telephone (308/537, 57.4% and 342/648, 52.8%, respectively), with overall enrollment more than doubling after interviewers called nonresponders. Participants identifying as female or White non-Hispanic, residing in urban areas, and not working outside the home were more likely to complete the web-based survey. Telephone participants were more likely than web-based participants to be aged 18-39 years or 60 years and older and reside in areas with lower levels of education, more linguistic isolation, lower income, and more people of color. While there were statistically significant sociodemographic differences noted between web-based and telephone case and control participants and their respective sample pools, participants were more similar to sample pools when web-based and telephone responses were combined. Web-based participants were less likely to report close contact with an individual with COVID-19 (odds ratio [OR] 0.70, 95% CI 0.53-0.94) but more likely to report community exposures, including visiting a grocery store or retail shop (OR 1.55, 95% CI 1.13-2.12), restaurant or cafe or coffee shop (OR 1.52, 95% CI 1.20-1.92), attending a gathering (OR 1.69, 95% CI 1.34-2.15), or sport or sporting event (OR 1.05, 95% CI 1.05-1.88). The web-based survey required an average of 0.03 (SD 0) person-hours per enrolled participant and US $920 in resources, whereas the telephone interview required an average of 5.11 person-hours per enrolled participant and US $70,000 in interviewer wages. Conclusions: While we still encountered control recruitment challenges noted in other observational studies, the sequential mixed-mode design was an efficient method for recruiting a more representative group of participants for a case-control study with limited impact on data quality and should be considered during public health emergencies when timely and accurate exposure information is needed to inform control measures. %M 38801768 %R 10.2196/56218 %U https://formative.jmir.org/2024/1/e56218 %U https://doi.org/10.2196/56218 %U http://www.ncbi.nlm.nih.gov/pubmed/38801768 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 13 %N %P e53646 %T Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey %A Glayzer,Jennifer E %A Bray,Bethany C %A Kobak,William H %A Steffen,Alana D %A Schlaeger,Judith M %+ Department of Human Development Nursing Science, College of Nursing, University of Illinois Chicago, 845 S. Damen Ave, Chicago, IL, 60622, United States, 1 2487629576, jglayzer@iu.edu %K Ehlers-Danlos syndrome %K hypermobility %K social media %K recruitment %K Facebook %K hereditary disease %K connective tissue disorders %K racial %K ethnic %K diversity %K challenges %K strategies %K strategy %K online %K information seeking %K cross-sectional survey %K dyspareunia %K painful sex %K United States %D 2024 %7 2.5.2024 %9 Protocol %J JMIR Res Protoc %G English %X Background: Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders caused by fragile lax collagen. Current EDS research lacks racial and ethnic diversity. The lack of diversity may be associated with the complexities of conducting a large international study on an underdiagnosed condition and a lack of EDS health care providers who diagnose and conduct research outside of the United States and Europe. Social media may be the key to recruiting a large diverse EDS sample. However, studies that have used social media to recruit have not been able to recruit diverse samples. Objective: This study aims to discuss challenges, strategies, outcomes, and lessons learned from using social media to recruit a large sample of females with EDS. Methods: Recruitment on social media for a cross-sectional survey examining dyspareunia (painful sexual intercourse) in females was examined. Inclusion criteria were (1) older than 18 years of age, (2) assigned female at birth, and (3) diagnosed with EDS. Recruitment took place on Facebook and Twitter (now X), from June 1 to June 25, 2019. Results: A total of 1178 females with EDS were recruited from Facebook (n=1174) and X (n=4). On Facebook, participants were recruited via support groups. A total of 166 EDS support groups were identified, 104 permitted the principal investigator to join, 90 approved posting, and the survey was posted in 54 groups. Among them, 30 of the support groups posted in were globally focused and not tied to any specific country or region, 21 were for people in the United States, and 3 were for people outside of the United States. Recruitment materials were posted on X with the hashtag #EDS. A total of 1599 people accessed the survey and 1178 people were eligible and consented. The average age of participants was 38.6 (SD 11.7) years. Participants were predominantly White (n=1063, 93%) and non-Hispanic (n=1046, 92%). Participants were recruited from 29 countries, with 900 (79%) from the United States and 124 (11%) from Great Britain. Conclusions: Our recruitment method was successful at recruiting a large sample. The sample was predominantly White and from North America and Europe. More research needs to be conducted on how to recruit a diverse sample. Areas to investigate may include connecting with more support groups from outside the United States and Europe, researching which platforms are popular in different countries, and translating study materials into different languages. A larger obstacle to recruiting diverse samples may be the lack of health care providers that diagnose EDS outside the United States and Europe, making the pool of potential participants small. There needs to be more health care providers that diagnose and treat EDS in countries that are predominantly made up of people of color as well as research that specifically focuses on these populations. International Registered Report Identifier (IRRID): RR1-10.2196/53646 %M 38696252 %R 10.2196/53646 %U https://www.researchprotocols.org/2024/1/e53646 %U https://doi.org/10.2196/53646 %U http://www.ncbi.nlm.nih.gov/pubmed/38696252 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e48767 %T Recruitment Strategies in the Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization Study (meSH): Multicenter Survey Study %A Nwosu,Chinonyelum %A Khan,Hamda %A Masese,Rita %A Nocek,Judith M %A Gollan,Siera %A Varughese,Taniya %A Bourne,Sarah %A Clesca,Cindy %A Jacobs,Sara R %A Baumann,Ana %A Klesges,Lisa M %A Shah,Nirmish %A Hankins,Jane S %A Smeltzer,Matthew P %+ The University of Memphis, 222 Robison Hall, Memphis, TN, 38152, United States, 1 901 678 3702, msmltzer@memphis.edu %K sickle cell %K recruitment %K eHealth %K multicenter %K utilization %K strategy %K hydroxyurea %K mobile health %K mhealth %K intervention %D 2024 %7 16.4.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Hydroxyurea is an evidence-based disease-modifying therapy for sickle cell disease (SCD) but is underutilized. The Integration of Mobile Health into Sickle Cell Disease Care to Increase Hydroxyurea Utilization (meSH) multicenter study leveraged mHealth to deliver targeted interventions to patients and providers. SCD studies often underenroll; and recruitment strategies in the SCD population are not widely studied. Unanticipated events can negatively impact enrollment, making it important to study strategies that ensure adequate study accrual. Objective: The goal of this study was to evaluate enrollment barriers and the impact of modified recruitment strategies among patients and providers in the meSH study in response to a global emergency. Methods: Recruitment was anticipated to last 2 months for providers and 6 months for patients. The recruitment strategies used with patients and providers, new recruitment strategies, and recruitment rates were captured and compared. To document recruitment adaptations and their reasons, study staff responsible for recruitment completed an open-ended 9-item questionnaire eliciting challenges to recruitment and strategies used. Themes were extrapolated using thematic content analysis. Results: Total enrollment across the 7 sites included 89 providers and 293 patients. The study acceptance rate was 85.5% (382/447) for both patients and providers. The reasons patients declined participation were most frequently a lack of time and interest in research, while providers mostly declined because of self-perceived high levels of SCD expertise, believing they did not need the intervention. Initially, recruitment involved an in-person invitation to participate during clinic visits (patients), staff meetings (providers), or within the office (providers). We identified several important recruitment challenges, including (1) lack of interest in research, (2) lack of human resources, (3) unavailable physical space for recruitment activities, and (4) lack of documentation to verify eligibility. Adaptive strategies were crucial to alleviate enrollment disruptions due to the COVID-19 pandemic. These included remote approaching and consenting (eg, telehealth, email, and telephone) for patients and providers. Additionally, for patients, recruitment was enriched by simplification of enrollment procedures (eg, directly approaching patients without a referral from the provider) and a multitouch method (ie, warm introductions with flyers, texts, and patient portal messages). We found that patient recruitment rates were similar between in-person and adapted (virtual with multitouch) approaches (167/200, 83.5% and 126/143, 88.1%, respectively; P=.23). However, for providers, recruitment was significantly higher for in-person vs remote recruitment (48/50, 96% and 41/54, 76%, respectively, P<.001). Conclusions: We found that timely adaptation in recruitment strategies secured high recruitment rates using an assortment of enriched remote recruitment strategies. Flexibility in approach and reducing the burden of enrollment procedures for participants aided enrollment. It is important to continue identifying effective recruitment strategies in studies involving patients with SCD and their providers and the impact and navigation of recruitment challenges. Trial Registration: ClinicalTrials.Gov NCT03380351; https://clinicaltrials.gov/study/NCT03380351 International Registered Report Identifier (IRRID): RR2-10.2196/16319 %M 38625729 %R 10.2196/48767 %U https://formative.jmir.org/2024/1/e48767 %U https://doi.org/10.2196/48767 %U http://www.ncbi.nlm.nih.gov/pubmed/38625729 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e48823 %T Risk Identification in Perinatal Health Care Settings via Technology-Based Recruitment Methods: Comparative Study %A Beatty,Jessica R %A Zelenak,Logan %A Gillon,Spencer %A McGoron,Lucy %A Goyert,Gregory %A Ondersma,Steven J %+ Charles Stewart Mott Department of Public Health, College of Human Medicine, Michigan State University, 200 East 1st Street, Room 368, Flint, MI, 48502, United States, 1 313 444 9797, onders12@msu.edu %K participant recruitment %K engagement %K health care screening %K mobile phone %D 2024 %7 4.3.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Digital screening and intervention tools have shown promise in the identification and reduction of substance use in health care settings. However, research in this area is impeded by challenges in integrating recruitment efforts into ongoing clinical workflows or staffing multiple study clinics with full-time research assistants, as well as by the underreporting of substance use. Objective: The aim of the study is to evaluate pragmatic methods for facilitating study recruitment in health care settings by examining recruitment rates and participant characteristics using in-person–based versus flyer approaches. Methods: This study compared recruitment rates at a Women’s Health clinic in the Midwest under 2 different recruitment strategies: in person versus via a flyer with a QR code. We also examined the disclosure of substance use and risk screener positivity for the 2 strategies. We also obtained information about the current use of technology and willingness to use it for study participation. Results: A greater percentage of patients recruited in person participated than those recruited via flyers (57/63, 91% vs 64/377, 17%). However, the final number recruited in each group was roughly equal (n=57 vs n=64). Additionally, participants recruited via flyers were more likely to screen positive for alcohol use risk on the Tolerance, Annoyed, Cut Down, Eye-Opener alcohol screen than those recruited at the clinic (24/64, 38% vs 11/57, 19%; χ21=4.9; P=.03). Participants recruited via flyers were also more likely to screen positive for drug use risk on the Wayne Indirect Drug Use Screener than those recruited at the clinic (20/64, 31% vs 9/57, 16%; χ21=4.0; P=.05). Furthermore, of the 121 pregnant women, 117 (96.7%) reported owning a smartphone, 111 (91.7%) had an SMS text message plan on their phone, and 94 (77.7%) reported being willing to receive SMS text messages or participate in a study if sent a link to their phone. Conclusions: The distribution of flyers with a QR code by medical staff appears to be an efficient and cost-effective method of recruitment that also facilitates disclosure while reducing the impact on clinic workflows. This method of recruitment can be useful for data collection at multiple locations and lead to larger samples across and between health systems. Participant recruitment via technology in perinatal health care appears to facilitate disclosure, particularly when participants can learn about the research and complete screening using their own device at a place and time convenient for them. Pregnant women in an urban Midwestern hospital had access to and were comfortable using technology. %M 38437004 %R 10.2196/48823 %U https://formative.jmir.org/2024/1/e48823 %U https://doi.org/10.2196/48823 %U http://www.ncbi.nlm.nih.gov/pubmed/38437004 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 7 %N %P e47984 %T Screening and Retaining Adolescents Recruited Through Social Media: Secondary Analysis from a Longitudinal Clinical Trial %A Weisblum,Margaret %A Trussell,Emma %A Schwinn,Traci %A Pacheco,Andrea R %A Nurkin,Paige %+ School of Social Work, Columbia University, 1255 Amsterdam Avenue, Room 1204, New York, NY, 10027, United States, 1 212 851 2280, mw3314@columbia.edu %K adolescents %K attrition prevention %K Instagram %K LGBQ %K online recruitment %K retention %K screening %K sexual minority %K social media %K youth %D 2024 %7 28.2.2024 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Social media has become a popular method to recruit participants, particularly for studies with hard-to-reach populations. These studies still face challenges in data quality and, for longitudinal studies, sample retention. However, in addition to aiding in recruitment, social media platforms can help researchers with participant verification and tracking procedures during the study. There is limited previous research describing how longitudinal studies can use social media to screen and retain participants. Objective: This paper describes strategies implemented to screen and retain a nationwide sample of sexual minority youth who were recruited through social media platforms for a longitudinal study testing a drug abuse prevention program. Methods: Our screening strategies for participants included collecting necessary demographic information (name, phone, email, and social media accounts), verifying this information using publicly available web-based records, and sending confirmation emails to ensure working email addresses and correct dates of birth. Retention strategies included communications designed to develop positive participant relationships, incentives for survey completion, regular updating of participant contact information, targeting hard-to-reach participants, and using social media as an alternative means of contacting participants. Results: During enrollment, although the only demographic data required were a phone number and an email address, 87.58% (1065/1216) of participants provided their Instagram as an alternative means of contact. This form of alternative communication remains the most preferred with 87.40% (1047/1198) of participants continuing to provide an Instagram username as of January 2023, about 3 years after recruitment began. In comparison, other alternative means of contact (eg, Facebook and alternative email) were provided by only 6.43% (77/1198) to 56.18% (673/1198) of participants. Direct messaging on Instagram was used to successfully confirm participant identity, remind participants to take annual follow-up surveys, and update lost participant contact information. Screening and retention strategies used in the study have helped achieve 96.30% (1171/1216) to 96.79% (1177/1216) sample retention across 3 waves of data collection. Conclusions: Though social media can be a helpful tool to recruit participants, attrition and participant authenticity difficulties may be associated with this method. Screening and retention strategies can be implemented to improve retention. Internet searches are effective for screening youth to ensure they meet eligibility requirements. Additionally, social media—Instagram in this study—can help to track and locate participants who do not respond to traditional contact methods. Trial Registration: ClinicalTrials.gov NCT03954535; https://clinicaltrials.gov/study/NCT03954535 %M 38416559 %R 10.2196/47984 %U https://pediatrics.jmir.org/2024/1/e47984 %U https://doi.org/10.2196/47984 %U http://www.ncbi.nlm.nih.gov/pubmed/38416559 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 8 %N %P e48538 %T Testing Behavioral Messages to Increase Recruitment to Health Research When Embedded Within Social Media Campaigns on Twitter: Web-Based Experimental Study %A Stoffel,Sandro T %A Law,Jing Hui %A Kerrison,Robert %A Brewer,Hannah R %A Flanagan,James M %A Hirst,Yasemin %+ Department of Behavioural Science and Health, University College London, Gower Street, London, WC1E 6BT, United Kingdom, 44 2076792000, s.stoffel@ucl.ac.uk %K advertise %K advertisement %K advertisements %K advertising %K behavior change %K behavioral %K behaviour change %K behavioural %K campaign %K campaigns %K experimental design %K message %K messages %K messaging %K recruit %K recruiting %K recruitment %K social media %K social norms %K Twitter %D 2024 %7 5.2.2024 %9 Original Paper %J JMIR Form Res %G English %X Background: Social media is rapidly becoming the primary source to disseminate invitations to the public to consider taking part in research studies. There is, however, little information on how the contents of the advertisement can be communicated to facilitate engagement and subsequently promote intentions to participate in research. Objective: This paper describes an experimental study that tested different behavioral messages for recruiting study participants for a real-life observational case-control study. Methods: We included 1060 women in a web-based experiment and randomized them to 1 of 3 experimental conditions: standard advertisement (n=360), patient endorsement advertisement (n=345), and social norms advertisement (n=355). After seeing 1 of the 3 advertisements, participants were asked to state (1) their intention to take part in the advertised case-control study, (2) the ease of understanding the message and study aims, and (3) their willingness to be redirected to the website of the case-control study after completing the survey. Individuals were further asked to suggest ways to improve the messages. Intentions were compared between groups using ordinal logistic regression, reported in percentages, adjusted odds ratio (aOR), and 95% CIs. Results: Those who were in the patient endorsement and social norms–based advertisement groups had significantly lower intentions to take part in the advertised study compared with those in the standard advertisement group (aOR 0.73, 95% CI 0.55-0.97; P=.03 and aOR 0.69, 95% CI 0.52-0.92; P=.009, respectively). The patient endorsement advertisement was perceived to be more difficult to understand (aOR 0.65, 95% CI 0.48-0.87; P=.004) and to communicate the study aims less clearly (aOR 0.72, 95% CI 0.55-0.95; P=.01). While the patient endorsement advertisement had no impact on intention to visit the main study website, the social norms advertisement decreased willingness compared with the standard advertisement group (157/355, 44.2% vs 191/360, 53.1%; aOR 0.74, 95% CI 0.54-0.99; P=.02). The majority of participants (395/609, 64.8%) stated that the messages did not require changes, but some preferred clearer (75/609, 12.3%) and shorter (59/609, 9.7%) messages. Conclusions: The results of this study indicate that adding normative behavioral messages to simulated tweets decreased participant intention to take part in our web-based case-control study, as this made the tweet harder to understand. This suggests that simple messages should be used for participant recruitment through Twitter (subsequently rebranded X). %M 38315543 %R 10.2196/48538 %U https://formative.jmir.org/2024/1/e48538 %U https://doi.org/10.2196/48538 %U http://www.ncbi.nlm.nih.gov/pubmed/38315543 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e51238 %T Email-Based Recruitment Into the Health eHeart Study: Cohort Analysis of Invited Eligible Patients %A Ng,Madelena Y %A Olgin,Jeffrey E %A Marcus,Gregory M %A Lyles,Courtney R %A Pletcher,Mark J %+ School of Public Health, University of California, 2121 Berkeley Way, Berkeley, CA, 94720, United States, 1 510 642 6000, madelena.ng@berkeley.edu %K digital health study %K recruitment %K research participants %K campaign evaluation %K email %K advertisement %K enrollment %K registration %K consent %K participation %K engagement %K eHealth %D 2023 %7 22.12.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Web- or app-based digital health studies allow for more efficient collection of health data for research. However, remote recruitment into digital health studies can enroll nonrepresentative study samples, hindering the robustness and generalizability of findings. Through the comprehensive evaluation of an email-based campaign on recruitment into the Health eHeart Study, we aim to uncover key sociodemographic and clinical factors that contribute to enrollment. Objective: This study sought to understand the factors related to participation, specifically regarding enrollment, in the Health eHeart Study as a result of a large-scale remote email recruitment campaign. Methods: We conducted a cohort analysis on all invited University of California, San Francisco (UCSF) patients to identify sociodemographic and clinical predictors of enrollment into the Health eHeart Study. The primary outcome was enrollment, defined by account registration and consent into the Health eHeart Study. The email recruitment campaign was carried out from August 2015 to February 2016, with electronic health record data extracted between September 2019 and December 2019. Results: The email recruitment campaign delivered at least 1 email invitation to 93.5% (193,606/206,983) of all invited patients and yielded a 3.6% (7012/193,606) registration rate among contacted patients and an 84.1% (5899/7012) consent rate among registered patients. Adjusted multivariate logistic regression models analyzed independent sociodemographic and clinical predictors of (1) registration among contacted participants and (2) consent among registered participants. Odds of registration were higher among patients who are older, women, non-Hispanic White, active patients with commercial insurance or Medicare, with a higher comorbidity burden, with congestive heart failure, and randomized to receive up to 2 recruitment emails. The odds of registration were lower among those with medical conditions such as dementia, chronic pulmonary disease, moderate or severe liver disease, paraplegia or hemiplegia, renal disease, or cancer. Odds of subsequent consent after initial registration were different, with an inverse trend of being lower among patients who are older and women. The odds of consent were also lower among those with peripheral vascular disease. However, the odds of consent remained higher among patients who were non-Hispanic White and those with commercial insurance. Conclusions: This study provides important insights into the potential returns on participant enrollment when digital health study teams invest resources in using email for recruitment. The findings show that participant enrollment was driven more strongly by sociodemographic factors than clinical factors. Overall, email is an extremely efficient means of recruiting participants from a large list into the Health eHeart Study. Despite some improvements in representation, the formulation of truly diverse studies will require additional resources and strategies to overcome persistent participation barriers. %M 38133910 %R 10.2196/51238 %U https://www.jmir.org/2023/1/e51238 %U https://doi.org/10.2196/51238 %U http://www.ncbi.nlm.nih.gov/pubmed/38133910 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e49354 %T Exploring Different Incentive Structures Among US Adults Who Use e-Cigarettes to Optimize Retention in Longitudinal Web-Based Surveys: Case Study %A Crespi,Elizabeth %A Heller,Johanna %A Hardesty,Jeffrey J %A Nian,Qinghua %A Sinamo,Joshua K %A Welding,Kevin %A Kennedy,Ryan David %A Cohen,Joanna E %+ Institute for Global Tobacco Control, Department of Health, Behavior & Society, Johns Hopkins Bloomberg School of Public Health, 2213 McElderry Street, Baltimore, MD, 21205, United States, 1 410 614 5378, ecrespi2@jhu.edu %K incentive %K conditional incentive %K web-based survey %K longitudinal study %K follow-up %K nicotine %K e-cigarettes %K tobacco %K survey %K retention %K demographics %K case study %K optimization %K adults %D 2023 %7 13.12.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Longitudinal cohort studies are critical for understanding the evolution of health-influencing behaviors, such as e-cigarette use, over time. Optimizing follow-up rates in longitudinal studies is necessary for ensuring high-quality data with sufficient power for analyses. However, achieving high rates of follow-up in web-based longitudinal studies can be challenging, even when monetary incentives are provided. Objective: This study compares participant progress through a survey and demographics for 2 incentive structures (conditional and hybrid unconditional-conditional) among US adults using e-cigarettes to understand the optimal incentive structure. Methods: The data used in this study are from a web-based longitudinal cohort study (wave 4; July to September 2022) of US adults (aged 21 years or older) who use e-cigarettes ≥5 days per week. Participants (N=1804) invited to the follow-up survey (median completion time=16 minutes) were randomly assigned into 1 of 2 incentive structure groups (n=902 each): (1) conditional (US $30 gift code upon survey completion) and (2) hybrid unconditional-conditional (US $15 gift code prior to survey completion and US $15 gift code upon survey completion). Chi-square tests assessed group differences in participant progress through 5 sequential stages of the survey (started survey, completed screener, deemed eligible, completed survey, and deemed valid) and demographics. Results: Of the 902 participants invited to the follow-up survey in each group, a higher proportion of those in the conditional (662/902, 73.4%) than the hybrid (565/902, 62.6%) group started the survey (P<.001). Of those who started the survey, 643 (97.1%) participants in the conditional group and 548 (97%) participants in the hybrid group completed the screener (P=.89), which was used each wave to ensure participants remained eligible. Of those who completed the screener, 555 (86.3%) participants in the conditional group and 446 (81.4%) participants in the hybrid group were deemed eligible for the survey (P=.02). Of those eligible, 514 (92.6%) participants from the conditional group and 401 (89.9%) participants from the hybrid group completed the survey and were deemed valid after data review (P=.14). Overall, more valid completions were yielded from the conditional (514/902, 57%) than the hybrid group (401/902, 44.5%; P<.001). Among those who validly completed the survey, no significant differences were found by group for gender, income, race, ethnicity, region, e-cigarette use frequency, past 30-day cigarette use, or number of waves previously completed. Conclusions: Providing a US $30 gift code upon survey completion yielded higher rates of survey starts and completions than providing a US $15 gift code both before and after survey completion. These 2 methods yielded participants with similar demographics, suggesting that one approach is not superior in obtaining a balanced sample. Based on this case study, future web-based surveys examining US adults using e-cigarettes could consider providing the full incentive upon completion of the survey. International Registered Report Identifier (IRRID): RR2-10.2196/38732 %M 38090793 %R 10.2196/49354 %U https://www.jmir.org/2023/1/e49354 %U https://doi.org/10.2196/49354 %U http://www.ncbi.nlm.nih.gov/pubmed/38090793 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e51089 %T Investigating Racial Disparities in Cancer Crowdfunding: A Comprehensive Study of Medical GoFundMe Campaigns %A Zhang,Xupin %A Wang,Jingjing %A Lane,Jamil M %A Xu,Xin %A Sörensen,Silvia %+ School of Economics and Management, East China Normal University, No. 3663, North Zhongshan Road, Shanghai, 200062, China, 86 21 62235067, xxu@infor.ecnu.edu.cn %K crowdfunding %K racial discrimination %K GoFundMe %D 2023 %7 12.12.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: In recent years, there has been growing concern about prejudice in crowdfunding; however, empirical research remains limited, particularly in the context of medical crowdfunding. This study addresses the pressing issue of racial disparities in medical crowdfunding, with a specific focus on cancer crowdfunding on the GoFundMe platform. Objective: This study aims to investigate racial disparities in cancer crowdfunding using average donation amount, number of donations, and success of the fundraising campaign as outcomes. Methods: Drawing from a substantial data set of 104,809 campaigns in the United States, we used DeepFace facial recognition technology to determine racial identities and used regression models to examine racial factors in crowdfunding performance. We also examined the moderating effect of the proportion of White residents on crowdfunding bias and used 2-tailed t tests to measure the influence of racial anonymity on crowdfunding success. Owing to the large sample size, we set the cutoff for significance at P<.001. Results: In the regression and supplementary analyses, the racial identity of the fundraiser significantly predicted average donations (P<.001), indicating that implicit bias may play a role in donor behavior. Gender (P=.04) and campaign description length (P=.62) did not significantly predict the average donation amounts. The race of the fundraiser was not significantly associated with the number of donations (P=.42). The success rate of cancer crowdfunding campaigns, although generally low (11.77%), showed a significant association with the race of the fundraiser (P<.001). After controlling for the covariates of the fundraiser gender, fundraiser age, local White proportion, length of campaign description, and fundraising goal, the average donation amount to White individuals was 17.68% higher than for Black individuals. Moreover, campaigns that did not disclose racial information demonstrated a marginally higher average donation amount (3.92%) than those identified as persons of color. Furthermore, the racial composition of the fundraiser’s county of residence was found to exert influence (P<.001); counties with a higher proportion of White residents exhibited reduced racial disparities in crowdfunding outcomes. Conclusions: This study contributes to a deeper understanding of racial disparities in cancer crowdfunding. It highlights the impact of racial identity, geographic context, and the potential for implicit bias in donor behavior. As web-based platforms evolve, addressing racial inequality and promoting fairness in health care financing remain critical goals. Insights from this research suggest strategies such as maintaining racial anonymity and ensuring that campaigns provide strong evidence of deservingness. Moreover, broader societal changes are necessary to eliminate the financial distress that drives individuals to seek crowdfunding support. %M 38085562 %R 10.2196/51089 %U https://www.jmir.org/2023/1/e51089 %U https://doi.org/10.2196/51089 %U http://www.ncbi.nlm.nih.gov/pubmed/38085562 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 9 %N %P e42123 %T Recruitment of Patients With Cancer for a Clinical Trial Evaluating a Web-Based Psycho-Oncological Intervention: Secondary Analysis of a Diversified Recruitment Strategy in a Randomized Controlled Trial %A Tsiouris,Angeliki %A Mayer,Anna %A Wiltink,Jörg %A Ruckes,Christian %A Beutel,Manfred E %A Zwerenz,Rüdiger %+ Department of Psychosomatic Medicine and Psychotherapy, University Medical Center of the Johannes Gutenberg-University Mainz, Untere Zahlbacher Str. 8, Mainz, 55131, Germany, 49 6131175981, ruediger.zwerenz@unimedizin-mainz.de %K psycho-oncology %K cancer %K recruitment %K social media %K web-based interventions %K web-based recruitment %D 2023 %7 27.11.2023 %9 Original Paper %J JMIR Cancer %G English %X Background: Participant recruitment poses challenges in psycho-oncological intervention research, such as psycho-oncological web-based intervention studies. Strict consecutive recruitment in clinical settings provides important methodological benefits but is often associated with low response rates and reduced practicability and ecological validity. In addition to preexisting recruitment barriers, the protective measures owing to the COVID-19 pandemic restricted recruitment activities in the clinical setting since March 2020. Objective: This study aims to outline the recruitment strategy for a randomized controlled trial evaluating the unguided emotion-based psycho-oncological online self-help (epos), which combined traditional and web-based recruitment. Methods: We developed a combined recruitment strategy including traditional (eg, recruitment in clinics, medical practices, cancer counseling centers, and newspapers) and web-based recruitment (Instagram, Facebook, and web pages). Recruitment was conducted between May 2020 and September 2021. Eligible participants for this study were adult patients with any type of cancer who were currently receiving treatment or in posttreatment care. They were also required to have a good command of the German language and access to a device suitable for web-based interventions, such as a laptop or computer. Results: We analyzed data from 304 participants who were enrolled in a 17-month recruitment period using various recruitment strategies. Web-based and traditional recruitment strategies led to comparable numbers of participants (151/304, 49.7% vs 153/304, 50.3%). However, web-based recruitment required much less effort. Regardless of the recruitment strategy, the total sample did not accurately represent patients with cancer currently undergoing treatment for major types of cancer in terms of various sociodemographic characteristics, including but not limited to sex and age. However, among the web-recruited study participants, the proportion of female participants was even higher (P<.001), the mean age was lower (P=.005), private internet use was higher (on weekdays: P=.007; on weekends: P=.02), and the number of those who were currently under treatment was higher (P=.048). Other demographic and medical characteristics revealed no significant differences between the groups. The majority of participants registered as self-referred (236/296, 79.7%) instead of having followed the recommendation of or study invitation from a health care professional. Conclusions: The combined recruitment strategy helped overcome general and COVID-19–specific recruitment barriers and provided the targeted participant number. Social media recruitment was the most efficient individual recruitment strategy for participant enrollment. Differences in some demographic and medical characteristics emerged, which should be considered in future analyses. Implications and recommendations for social media recruitment based on personal experiences are presented. Trial Registration: German Clinical Trials Register DRKS00021144; https://drks.de/search/en/trial/DRKS00021144 International Registered Report Identifier (IRRID): RR2-10.1016/j.invent.2021.100410 %M 38010774 %R 10.2196/42123 %U https://cancer.jmir.org/2023/1/e42123 %U https://doi.org/10.2196/42123 %U http://www.ncbi.nlm.nih.gov/pubmed/38010774 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e52877 %T Authors’ Reply: “The Problem of Investigating Causal Relationships Between Cognitive and Evaluative Variables” %A Guetz,Bernhard %A Bidmon,Sonja %+ Carinthia University of Applied Sciences, Europastraße 4, Villach & Klagenfurt, 9524, Austria, 43 5905002453, guetz@fh-kaernten.at %K social influence %K physician rating websites %K patient satisfaction %K eHealth literacy %D 2023 %7 22.11.2023 %9 Letter to the Editor %J J Med Internet Res %G English %X %M 37991815 %R 10.2196/52877 %U https://www.jmir.org/2023/1/e52877 %U https://doi.org/10.2196/52877 %U http://www.ncbi.nlm.nih.gov/pubmed/37991815 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e45570 %T The Problem of Investigating Causal Relationships Between Cognitive and Evaluative Variables %A Konerding,Uwe %+ Trimberg Research Academy, University of Bamberg, Otto-Friedrich-Universität Bamberg, Bamberg, D-96045, Germany, 49 951 863 3098, uwe.konerding@uni-bamberg.de %K social influence %K physician rating websites %K patient satisfaction %K eHealth literacy %D 2023 %7 22.11.2023 %9 Letter to the Editor %J J Med Internet Res %G English %X %M 37991832 %R 10.2196/45570 %U https://www.jmir.org/2023/1/e45570 %U https://doi.org/10.2196/45570 %U http://www.ncbi.nlm.nih.gov/pubmed/37991832 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e46190 %T Effectiveness of Facebook Groups and Pages on Participant Recruitment Into a Randomized Controlled Trial During the COVID-19 Pandemic: Descriptive Study %A Wong,Kirstie H T W %A Lau,Wallis C Y %A Man,Kenneth K C %A Bilbow,Andrea %A Ip,Patrick %A Wei,Li %+ Research Department of Practice and Policy, University College London, Mezzanine Floor, BMA House, Tavistock Square, London, WC1H 9JP, United Kingdom, 44 20 3987 2846, l.wei@ucl.ac.uk %K 1-2-3 Magic, ADHD %K attention deficit/hyperactivity disorder %K behavioral parenting training %K BPT %K clinical trial %K COVID-19 %K Facebook group %K Facebook page %K Facebook %K pediatric %K randomized controlled trial %K recruitment %K social media %K youth %K Zoom %D 2023 %7 17.10.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: In response to the unprecedented challenges posed by the COVID-19 pandemic, conventional recruitment approaches were halted, causing the suspension of numerous clinical trials. Previously, Facebook (Meta Platforms, Inc) has emerged as a promising tool for augmenting participant recruitment. While previous research has explored the use of Facebook for surveys and qualitative studies, its potential for recruiting participants into randomized controlled trials (RCTs) remains underexplored. Objective: This study aimed to comprehensively examine the effectiveness of using Facebook groups and pages to facilitate participant recruitment during the COVID-19 pandemic for an RCT on the effectiveness of a remote parenting program, 1-2-3 Magic, in families who have children with attention-deficit/hyperactivity disorder (ADHD) in the United Kingdom. Methods: We disseminated 5 Facebook posts with an attached digital flyer across 4 prominent ADHD UK support groups and pages run by the National Attention Deficit Disorder Information and Support Services, reaching an audience of around 16,000 individuals over 2 months (January 7 to March 4, 2022). Eligibility criteria mandated participants to be parents or caregivers of a child with diagnosed ADHD aged 12 years or younger, be residing in the United Kingdom, have access to stable internet, and have a device with the Zoom (Zoom Video Communications) app. Participants were required to have never attended 1-2-3 Magic training previously. Prospective participants expressed their interest through Microsoft Forms (Microsoft Corporation). The trial aimed to recruit 84 parents. It is important to note that the term “parent” or “caregiver” in the RCT and in this study within a trial refers to anybody who has legal responsibility for the child. Results: Overall, 478 individuals registered their interest through Microsoft Forms within the stipulated 2-month window. After the eligibility check, 135 participants were contacted for a baseline meeting through Zoom. The first 84 participants who attended a baseline meeting and returned a completed consent form were enrolled. Subsequently, another 16 participants were added, resulting in a final sample of 100 participants. This recruitment strategy incurred negligible expenses and demanded minimal human resources. The approach yielded favorable outcomes by efficiently attracting eligible participants in a condensed time frame, transcending geographical barriers throughout the United Kingdom, which would have been tedious to achieve through traditional recruitment methods. Conclusions: Our experience demonstrated that digital flyers posted in the targeted Facebook groups were a cost-effective and quick method for recruiting for an RCT, which opened during the COVID-19 pandemic when lockdown restrictions were in place in the United Kingdom. Trialists should consider this low-cost recruitment intervention for trials going forward, and in the case of a global pandemic, this novel recruitment method enabled the trial to continue where many have failed. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN) 15281572; https://www.isrctn.com/ISRCTN15281572 %M 37847536 %R 10.2196/46190 %U https://www.jmir.org/2023/1/e46190 %U https://doi.org/10.2196/46190 %U http://www.ncbi.nlm.nih.gov/pubmed/37847536 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e47705 %T Merits and Pitfalls of Social Media as a Platform for Recruitment of Study Participants %A Oudat,Qutaibah %A Bakas,Tamilyn %+ College of Nursing, University of Cincinnati, 3110 Vine St, Cincinnati, OH, 45221, United States, 1 (513) 558 5500, oudatqh@mail.uc.edu %K recruitment %K social media %K review %K study participant %K methods %D 2023 %7 11.10.2023 %9 Viewpoint %J J Med Internet Res %G English %X Efficient and effective methods of recruiting participants for studies have characteristically come with many challenges. The unprecedented rise of social media platforms such as Facebook and Instagram has revolutionized the ease of recruiting participants as compared to more traditional methods such as newspaper or radio advertisements. While these new advancements may seem to increase the success of recruitment, they are not without their own faults and limitations. In this paper, we intend to dissect the advantages and disadvantages of social media platforms in recruiting participants. Specifically, we will discuss the advantages of targeted and rapid recruitment, engagement, and cost reduction as well as the disadvantages of representativeness, privacy concerns, limited control, and limited access. %M 37819692 %R 10.2196/47705 %U https://www.jmir.org/2023/1/e47705 %U https://doi.org/10.2196/47705 %U http://www.ncbi.nlm.nih.gov/pubmed/37819692 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e49678 %T Mobile and Web-Based Partnered Intervention to Improve Remote Access to Pain and Posttraumatic Stress Disorder Symptom Management: Recruitment and Attrition in a Randomized Controlled Trial %A Haun,Jolie N %A Venkatachalam,Hari H %A Fowler,Christopher A %A Alman,Amy C %A Ballistrea,Lisa M %A Schneider,Tali %A Benzinger,Rachel C %A Melillo,Christine %A Alexander,Neil B %A Klanchar,S Angelina %A Lapcevic,William %A French,Dustin D %+ James A. Haley Veterans' Hospital, Research Service, 8900 Grand Oak Circle, Tampa, FL, 33637, United States, 1 8135587622, rachel.benzinger@VA.Gov %K PTSD %K pain %K veteran %K attrition %K CIH %K randomized controlled trial %K chronic pain %K remote intervention %K dyad %K mobile health %D 2023 %7 3.10.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Increasing access to nonpharmacological interventions to manage pain and posttraumatic stress disorder (PTSD) is essential for veterans. Complementary and integrative health (CIH) interventions can help individuals manage symptom burden with enhanced accessibility via remotely delivered health care. Mission Reconnect (MR) is a partnered, self-directed intervention that remotely teaches CIH skills. Objective: The purpose of this paper is to describe the recruitment, onboarding phase, and attrition of a fully remote randomized controlled trial (RCT) assessing the efficacy of a self-directed mobile and web-based intervention for veterans with comorbid chronic pain and PTSD and their partners. Methods: A total of 364 veteran-partner dyads were recruited to participate in a mixed methods multisite waitlist control RCT. Qualitative attrition interviews were conducted with 10 veterans with chronic pain and PTSD, and their self-elected partners (eg, spouse) who consented but did not begin the program. Results: At the point of completing onboarding and being randomized to the 2 treatment arms, of the 364 recruited dyads, 97 (26.6%) failed to complete onboarding activities. Reported reasons for failure to complete onboarding include loss of self-elected partner buy-in (n=8, 8%), difficulties with using remote data collection methods and interventions (n=30, 31%), and adverse health experiences unrelated to study activities (n=23, 24%). Enrolled veterans presented at baseline with significant PTSD symptom burden and moderate-to-severe pain severity, and represented a geographically and demographically diverse population. Attrition interviews (n=10) indicated that misunderstanding MR including the intent of the intervention or mistaking the surveys as the actual intervention was a reason for not completing the MR registration process. Another barrier to MR registration was that interviewees described the mailed study information and registration packets as too confusing and excessive. Competing personal circumstances including health concerns that required attention interfered with MR registration. Common reasons for attrition following successful MR registration included partner withdrawal, adverse health issues, and technological challenges relating to the MR and electronic data collection platform (Qualtrics). Participant recommendations for reducing attrition included switching to digital forms to reduce participant burden and increasing human interaction throughout the registration and baseline data collection processes. Conclusions: Challenges, solutions, and lessons learned for study recruitment and intervention delivery inform best practices of delivering remote self-directed CIH interventions when addressing the unique needs of this medically complex population. Successful recruitment and enrollment of veterans with chronic pain and PTSD, and their partners, to remote CIH programs and research studies requires future examination of demographic and symptom-associated access barriers. Accommodating the unique needs of this medically complex population is essential for improving the effectiveness of CIH programs. Disseminating lessons learned and improving access to remotely delivered research studies and CIH programs is paramount in the post–COVID-19 climate. Trial Registration: ClinicalTrials.gov NCT03593772; https://clinicaltrials.gov/ct2/show/NCT03593772 %M 37788078 %R 10.2196/49678 %U https://www.jmir.org/2023/1/e49678 %U https://doi.org/10.2196/49678 %U http://www.ncbi.nlm.nih.gov/pubmed/37788078 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e43824 %T Recruiting Sexual and Gender Minority Veterans for Health Disparities Research: Recruitment Protocol of a Web-Based Prospective Cohort Study %A Fan,Carolyn A %A Upham,Michelle %A Beaver,Kristine %A Dashtestani,Krista %A Skiby,Malachi M %A Pentel,Kimberly Z %A Rhew,Isaac C %A Kauth,Michael R %A Shipherd,Jillian C %A Kaysen,Debra %A Simpson,Tracy %A Lehavot,Keren %+ Department of Health Systems and Population Health, University of Washington School of Public Health, Hans Rosling Center for Population Health, 3980 15th Avenue NE, Box 351616, Seattle, WA, 98195, United States, 1 206 616 2935, cfan5@uw.edu %K lesbian, gay, bisexual, transgender, queer, and other sexual and gender minority %K LGBTQ+ %K veteran %K recruitment %K health disparities %D 2023 %7 2.10.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: The Health for Every Veteran Study is the first Veterans Health Administration–funded, nationwide study on lesbian, gay, bisexual, transgender, queer, and other sexual and gender minority (LGBTQ+) veterans’ health that relies exclusively on primary recruitment methods. This study aimed to recruit 1600 veterans with diverse sexual and gender identities to study the mental health and health risk behaviors of this population. A growing body of literature highlights the health inequities faced by LGBTQ+ veterans when compared with their heterosexual or cisgender peer groups. However, there is little to no guidance in the health disparities literature describing the recruitment of LGBTQ+ veterans. Objective: This paper provides an overview of the recruitment methodology of Health for Every Veteran Study. We describe the demographics of the enrolled cohort, challenges faced during recruitment, and considerations for recruiting LGBTQ+ veterans for health research. Methods: Recruitment for this study was conducted for 15 months, from September 2019 to December 2020, with the goal of enrolling 1600 veterans evenly split among 8 sexual orientation and gender identity subgroups: cisgender heterosexual women, cisgender lesbian women, cisgender bisexual women, cisgender heterosexual men, cisgender gay men, cisgender bisexual men, transgender women, and transgender men. Three primary recruitment methods were used: social media advertising predominantly through Facebook ads, outreach to community organizations serving veterans and LGBTQ+ individuals across the United States, and contracting with a research recruitment company, Trialfacts. Results: Of the 3535 participants screened, 1819 participants met the eligibility criteria, and 1062 completed the baseline survey to enroll. At baseline, 25.24% (268/1062) were recruited from Facebook ads, 40.49% (430/1062) from community outreach, and 34.27% (364/1062) from Trialfacts. Most subgroups neared the target enrollment goals, except for cisgender bisexual men, women, and transgender men. An exploratory group of nonbinary and genderqueer veterans and veterans with diverse gender identities was included in the study. Conclusions: All recruitment methods contributed to significant portions of the enrolled cohort, suggesting that a multipronged approach was a critical and successful strategy in our study of LGBTQ+ veterans. We discuss the strengths and challenges of all recruitment methods, including factors impacting recruitment such as the COVID-19 pandemic, negative comments on Facebook ads, congressional budget delays, and high-volume surges of heterosexual participants from community outreach. In addition, our subgroup stratification offers important disaggregated insights into the recruitment of specific LGBTQ+ subgroups. Finally, the web-based methodology offers important perspectives not only for reaching veterans outside of the Veterans Health Administration but also for research studies taking place in the COVID-19-impacted world. Overall, this study outlines useful recruitment methodologies and lessons learned to inform future research that seeks to recruit marginalized communities. International Registered Report Identifier (IRRID): DERR1-10.2196/43824 %M 37782536 %R 10.2196/43824 %U https://www.researchprotocols.org/2023/1/e43824 %U https://doi.org/10.2196/43824 %U http://www.ncbi.nlm.nih.gov/pubmed/37782536 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e47970 %T Effectiveness and Cost of Using Facebook Recruitment to Elicit Canadian Women’s Perspectives on Bone Health and Osteoporosis: Cross-Sectional Survey Study %A Billington,Emma Olive %A Hasselaar,Charley M %A Kembel,Lorena %A Myagishima,Rebecca C %A Arain,Mubashir A %+ Cumming School of Medicine, University of Calgary, 3330 Hospital Drive NW, Calgary, AB, T2N 4N1, Canada, 1 4039558328, emma.billington@ahs.ca %K osteoporosis %K bone health %K bone mineral density %K fracture %K survey %K Facebook %K advertisement %K recruitment %K women’s health %K social media %K bone %K perspective %D 2023 %7 29.9.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Surveys can help health researchers better understand the public’s perspectives and needs regarding prevalent conditions such as osteoporosis, which affects more than two-thirds of postmenopausal women. However, recruitment of large cohorts for survey research can be time-consuming and expensive. With 2.9 billion active users across the globe and reasonable advertising costs, Facebook (Meta Platforms, Inc) has emerged as an effective recruitment tool for surveys, although previous studies have targeted young populations (<50 years of age) and none have focused on bone health. Objective: We assessed the effectiveness and cost of using Facebook to recruit Canadian women aged ≥45 years to share their perspectives on bone health and osteoporosis via a web-based survey. Methods: We developed a 15-minute web-based survey with the goal of eliciting perspectives on bone health and osteoporosis. A Facebook advertisement was placed for 2 weeks in February 2022, during which time it was shown to women of age ≥45 years who resided in Canada, inviting them to participate and offering a chance to win 1 of 5 CAD $100 gift cards (at the time of this study [February 14, 2022], a currency exchange rate of CAD $1=US $0.79 was applicable). Those who clicked on the advertisement were taken to an eligibility screening question on the survey home screen. Individuals who confirmed eligibility were automatically directed to the first survey question. All individuals who answered the first survey question were considered participants and included in the analyses. We determined the survey reach, click rate, cooperation rate, completion rate, cost per click, and cost per participant. Sociodemographic characteristics of respondents were compared with data from the 2021 Canadian Census. Results: The Facebook advertisement was shown to 34,086 unique Facebook users, resulting in 2033 link clicks (click rate: 6.0%). A total of 1320 individuals completed the eligibility screening question, 1195 started the survey itself (cooperation rate: 58.8%), and 966 completed the survey (completion rate: 47.5%). The cost of the advertising campaign was CAD $280.12, resulting in a cost per click of CAD $0.14 and a cost per participant of CAD $0.23. The 1195 participants ranged in age from 45-89 years (mean 65, SD 7 years), 921 (93.7%) were of White ethnicity, 854 (88.3%) had completed some postsecondary education, and 637 (65.8%) resided in urban areas. Responses were received from residents of all 10 Canadian provinces and 2 of 3 territories. When compared to 2021 Canadian Census data, postsecondary education and rural residence were overrepresented in our study population. Conclusions: Facebook advertising is an efficient, effective, and inexpensive way of recruiting large samples of older women for participation in web-based surveys for health research. However, it is important to recognize that this modality is a form of convenience sampling and the benefits of Facebook recruitment must be balanced with its limitations, which include selection bias and coverage error. %M 37773625 %R 10.2196/47970 %U https://www.jmir.org/2023/1/e47970 %U https://doi.org/10.2196/47970 %U http://www.ncbi.nlm.nih.gov/pubmed/37773625 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e46415 %T Internet-Based Recruitment and Retention of Young Adults With Type 1 Diabetes: Cross-Sectional Study %A Griggs,Stephanie %A Ash,Garrett I %A Pignatiello,Grant %A Papik,AnnMarie %A Huynh,Johnathan %A Leuchtag,Mary %A Hickman Jr,Ronald L %+ Case Western Reserve University Frances Payne Bolton School of Nursing, 2120 Cornell Road, Cleveland, OH, 44145, United States, 1 216 385 1244, stephanie.griggs@case.edu %K type 1 diabetes %K internet-based recruitment %K young adult %K diabetes %K diabetic %K type 1 %K recruit %K research platform %K T1D %K social media %K research subject %K research participant %K study participant %D 2023 %7 22.8.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: Multiple research strategies are required to recruit and engage a representative cohort of young adults in diabetes research. In this report, we describe an approach for internet-based recruitment for a repeated-measures descriptive study. Objective: The objective of this cross-sectional study was to determine whether internet-based recruitment through multiple social media platforms, a clinical research platform, and cooperation with community partnerships—College Diabetes Network and Beyond Type 1—would serve as an effective way to recruit a representative sample of young adults aged 18-25 years with type 1 diabetes (T1D). Methods: We conducted a repeated-measures descriptive study. We captured enrollment rates and participant characteristics acquired from each social media platform through survey data and Facebook analytics. This study was advertised via paid postings across a combination of different social media platforms (eg, Facebook, Instagram, Twitter, and Reddit). We used quarterly application postings, quarterly newsletters, and participation in the ResearchMatch registry to identify potentially eligible participants from February 3, 2021, to June 6, 2022. Results: ResearchMatch proved to be the most cost-effective strategy overall, yielding the highest gender and racial diversity compared to other internet platforms (eg, Facebook, Instagram, Twitter, and Reddit), application postings (eg, Beyond Type 1), and newsletters (eg, College Diabetes Network and a local area college). However, we propose that the combination of these approaches yielded a larger, more diverse sample compared to any individual strategy. Our recruitment cost was US $16.69 per eligible participant, with a 1.27% conversion rate and a 30% eligibility rate. Conclusions: Recruiting young adults with T1D across multiple internet-based platforms was an effective strategy to yield a moderately diverse sample. Leveraging various recruitment strategies is necessary to produce a representative sample of young adults with T1D. As the internet becomes a larger forum for study recruitment, participants from underrepresented backgrounds may continue engaging in research through advertisements on the internet and other internet-based recruitment platforms. %M 37606985 %R 10.2196/46415 %U https://formative.jmir.org/2023/1/e46415 %U https://doi.org/10.2196/46415 %U http://www.ncbi.nlm.nih.gov/pubmed/37606985 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e44813 %T Identifying the Most Effective Recruitment Strategy Using Financial Reimbursements for a Web-Based Peer Network Study With Young People Aged 16-18 Years: Protocol for a Randomized Controlled Trial %A Raggatt,Michelle %A Wright,Cassandra J C %A Sacks-Davis,Rachel %A Dietze,Paul M %A Hellard,Margaret E %A Hocking,Jane S %A Lim,Megan S C %+ Burnet Institute, 85 Commercial Rd, Burnet Institute, Melbourne, 3004, Australia, 61 0413104901, megan.lim@burnet.edu.au %K young adult %K incentive reimbursement %K research subject %K study participant %K financial %K research subject recruitment %K social network %K peer network %K web-based network %K randomized %K friend %K recruit %K incentive %K reimburse %K reward %K incentivized %K youth %K adolescent %K teenage %K recruitment %K reinforcing factor %K enabling factor %K disambiguation %K intrinsic incentive %K extrinsic incentive %K motivation %K reward system %K positive reinforcement %K compensation %K monetary %K remuneration %K remunerative incentive %K financial incentive %K bonus %K stipend %K donation %D 2023 %7 11.8.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: Peers are an important determinant of health and well-being during late adolescence; however, there is limited quantitative research examining peer influence. Previous peer network research with adolescents faced methodological limitations and difficulties recruiting young people. Objective: This study aims to determine whether a web-based peer network survey is effective at recruiting adolescent peer networks by comparing 2 strategies for reimbursement. Methods: This study will use a 2-group randomized trial design to test the effectiveness of reimbursements for peer referral in a web-based cross-sectional peer network survey. Young people aged 16-18 years recruited through Instagram, Snapchat, and a survey panel will be randomized to receive either scaled group reimbursement (the experimental group) or fixed individual reimbursement (the control group). All participants will receive a reimbursement of Aus $5 (US $3.70) for their own survey completion. In the experimental group (scaled group reimbursement), all participants within a peer network will receive an additional Aus $5 (US $3.70) voucher for each referred participant who completes the study, up to a maximum total value of Aus $30 (US $22.20) per participant. In the control group (fixed individual reimbursement), participants will only be reimbursed for their own survey completion. Participants’ peer networks are assessed during the survey by asking about their close friends. A unique survey link will be generated to share with the participant’s nominated friends for the recruitment of secondary participants. Outcomes are the proportion of a participant’s peer network and the number of referred peers who complete the survey. The required sample size is 306 primary participants. Using a multilevel logistic regression model, we will assess the effect of the reimbursement intervention on the proportion of primary participants’ close friends who complete the survey. The secondary aim is to determine participant characteristics that are associated with successfully recruiting close friends. Young people aged 16-18 years were involved in the development of the study design through focus groups and interviews (n=26). Results: Participant recruitment commenced in 2022. Conclusions: A longitudinal web-based social network study could provide important data on how social networks and their influence change over time. This trial aims to determine whether scaled group reimbursement can increase the number of peers referred. The outcomes of this trial will improve the recruitment of young people to web-based network studies of sensitive health issues. International Registered Report Identifier (IRRID): DERR1-10.2196/44813 %M 37566448 %R 10.2196/44813 %U https://www.researchprotocols.org/2023/1/e44813 %U https://doi.org/10.2196/44813 %U http://www.ncbi.nlm.nih.gov/pubmed/37566448 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e41997 %T Testing Multiple Methods to Effectively Promote Use of a Knowledge Portal to Health Policy Makers: Quasi-Experimental Evaluation %A Weber,Matthew %A Armour,Veronica L %A Lindstadt,Calandra %A Yanovitzky,Itzhak %+ Department of Communication, School of Communication and Information, Rutgers University, 4 Huntington Street, New Brunswick, NJ, 08901, United States, 1 8475713847, matthew.weber@rutgers.edu %K depression %K depression screening %K policy making %K Google Ads %K analytics %K knowledge brokers %K knowledge sharing %K online %K resources %K teen %K young adult %K effectiveness %D 2023 %7 28.6.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Health policy makers and advocates increasingly utilize online resources for policy-relevant knowledge. Knowledge brokering is one potential mechanism to encourage the use of research evidence in policy making, but the mechanisms of knowledge brokerage in online spaces are understudied. This work looks at knowledge brokerage through the launch of Project ASPEN, an online knowledge portal developed in response to a New Jersey legislative act that established a pilot program for adolescent depression screening for young adults in grades 7-12. Objective: This study compares the ability to drive policy brief downloads by policy makers and advocates from the Project ASPEN knowledge portal using a variety of online methods to promote the knowledge portal. Methods: The knowledge portal was launched on February 1, 2022, and a Google Ad campaign was run between February 27, 2022, and March 26, 2022. Subsequently, a targeted social media campaign, an email campaign, and tailored research presentations were used to promote the website. Promotional activities ended on May 31, 2022. Website analytics were used to track a variety of actions including new users coming to the website, page views, and policy brief downloads. Statistical analysis was used to assess the efficacy of different approaches. Results: The campaign generated 2837 unique user visits to the knowledge portal and 4713 page views. In addition, the campaign generated 6.5 policy web page views/day and 0.7 policy brief downloads/day compared with 1.8 views/day and 0.5 downloads/day in the month following the campaign. The rate of policy brief page view conversions was significantly higher for Google Ads compared with other channels such as email (16.0 vs 5.4; P<.001) and tailored research presentations (16.0 vs 0.8; P<.001). The download conversion rate for Google Ads was significantly higher compared with social media (1.2 vs 0.1; P<.001) and knowledge brokering activities (1.2 vs 0.2; P<.001). By contrast, the download conversion rate for the email campaign was significantly higher than that for social media (1.0 vs 0.1; P<.001) and tailored research presentations (1.0 vs 0.2; P<.001). While Google Ads for this campaign cost an average of US $2.09 per click, the cost per conversion was US $11 per conversion to drive targeted policy web page views and US $147 per conversion to drive policy brief downloads. While other approaches drove less traffic, those approaches were more targeted and cost-effective. Conclusions: Four tactics were tested to drive user engagement with policy briefs on the Project ASPEN knowledge portal. Google Ads was shown to be effective in driving a high volume of policy web page views but was ineffective in terms of relative costs. More targeted approaches such as email campaigns and tailored research presentations given to policy makers and advocates to promote the use of research evidence on the knowledge portal website are likely to be more effective when balancing goals and cost-effectiveness. %M 37379073 %R 10.2196/41997 %U https://www.jmir.org/2023/1/e41997 %U https://doi.org/10.2196/41997 %U http://www.ncbi.nlm.nih.gov/pubmed/37379073 %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 6 months ago were half as likely to enroll (odds ratio 0.45, 95% CI 0.21-0.94). Moreover, eligible participants with self-reported antiretroviral therapy adherence (SRA) between 50% and 80% were statistically significant (P<.001 to P=.03) and more likely to enroll than those with SRA >80%. Conclusions: The findings add to our knowledge on the use of digital technologies for youth living with HIV before and during the COVID-19 pandemic and provide insight into the impact of expanding eligibility criteria on enrollment. As the COVID-19 pandemic continues and the use of and engagement with social media and dating apps among youth living with HIV changes, these platforms should continue to be investigated as potential recruitment tools. Using a wide variety of recruitment strategies such as using social media and dating apps as well as provider referral mechanisms, increasing compensation amounts, and including SRA in enrollment criteria should continue to be studied with respect to their ability to successfully recruit and enroll eligible participants. International Registered Report Identifier (IRRID): RR2-10.2196/11183 %M 36745773 %R 10.2196/40077 %U https://formative.jmir.org/2023/1/e40077 %U https://doi.org/10.2196/40077 %U http://www.ncbi.nlm.nih.gov/pubmed/36745773 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 9 %N %P e40814 %T Understanding Public Attitudes and Willingness to Share Commercial Data for Health Research: Survey Study in the United Kingdom %A Hirst,Yasemin %A Stoffel,Sandro T %A Brewer,Hannah R %A Timotijevic,Lada %A Raats,Monique M %A Flanagan,James M %+ Lancaster Medical School, Lancaster University, Sir John Fisher Drive, Bailrigg, Lancaster, LA1 4YW, United Kingdom, 44 1524 65201, y.hirst@lancaster.ac.uk %K commercial data %K data sharing %K participant recruitment %K loyalty cards %K sociodemographic factors %K data donation %K data %K health %K public %K acceptability %K digital %K mobile phone %D 2023 %7 23.3.2023 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Health research using commercial data is increasing. The evidence on public acceptability and sociodemographic characteristics of individuals willing to share commercial data for health research is scarce. Objective: This survey study investigates the willingness to share commercial data for health research in the United Kingdom with 3 different organizations (government, private, and academic institutions), 5 different data types (internet, shopping, wearable devices, smartphones, and social media), and 10 different invitation methods to recruit participants for research studies with a focus on sociodemographic characteristics and psychological predictors. Methods: We conducted a web-based survey using quota sampling based on age distribution in the United Kingdom in July 2020 (N=1534). Chi-squared tests tested differences by sociodemographic characteristics, and adjusted ordered logistic regressions tested associations with trust, perceived importance of privacy, worry about data misuse and perceived risks, and perceived benefits of data sharing. The results are shown as percentages, adjusted odds ratios, and 95% CIs. Results: Overall, 61.1% (937/1534) of participants were willing to share their data with the government and 61% (936/1534) of participants were willing to share their data with academic research institutions compared with 43.1% (661/1534) who were willing to share their data with private organizations. The willingness to share varied between specific types of data—51.8% (794/1534) for loyalty cards, 35.2% (540/1534) for internet search history, 32% (491/1534) for smartphone data, 31.8% (488/1534) for wearable device data, and 30.4% (467/1534) for social media data. Increasing age was consistently and negatively associated with all the outcomes. Trust was positively associated with willingness to share commercial data, whereas worry about data misuse and the perceived importance of privacy were negatively associated with willingness to share commercial data. The perceived risk of sharing data was positively associated with willingness to share when the participants considered all the specific data types but not with the organizations. The participants favored postal research invitations over digital research invitations. Conclusions: This UK-based survey study shows that willingness to share commercial data for health research varies; however, researchers should focus on effectively communicating their data practices to minimize concerns about data misuse and improve public trust in data science. The results of this study can be further used as a guide to consider methods to improve recruitment strategies in health-related research and to improve response rates and participant retention. %M 36951929 %R 10.2196/40814 %U https://publichealth.jmir.org/2023/1/e40814 %U https://doi.org/10.2196/40814 %U http://www.ncbi.nlm.nih.gov/pubmed/36951929 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 12 %N %P e40675 %T Design and Implementation of the Surveys of Women: Protocol for an Address-Based Sampling Multimodal Study %A Poland,Stephanie %A Stern,Michael %A English,Ned %A Pedlow,Steven %A Archambeau,Katherine %A Carris,Kari %+ National Opinion Research Center at the University of Chicago, 55 E Monroe, Ste 3000, Chicago, IL, 60603, United States, 1 3127594261, poland-stephanie@norc.org %K multimode %K web survey %K cross-sectional %K women’s health %K reproductive health %K methods %K data collection %K implementation %K survey %K contraceptive health %K contraception %K survey methods %K data collection %K data processing %D 2023 %7 15.3.2023 %9 Protocol %J JMIR Res Protoc %G English %X Background: Studies conducted in the United States such as the National Survey of Family Growth (NSFG) and the Pregnancy Risk Assessment Monitoring System (PRAMS) collect data on pregnancy intentions to aid in improving health education, services, and programs. PRAMS collects data from specific sites, and NSFG is a national household-based survey. Like NSFG, the Surveys of Women was designed to survey participants residing in households using an address-based sample and a multimode data collection approach. The Surveys of Women collects data from eligible participants in 9 states within the United States on contraception use, reproductive health, and pregnancy intentions. In this paper, we focus on the baseline data collection protocol, including sample design, data collection procedures, and data processing. We also include a brief discussion on the follow-up and endline survey methodologies. Our goal is to inform other researchers on methods to consider when fielding a household-level reproductive health survey. Objective: The Surveys of Women was developed to support state-specific research and evaluation projects, with an overall goal of understanding contraceptive health practices among women aged 18-44 years. The project collects data from respondents in 9 different states (Arizona, Alabama, Delaware, Iowa, Maryland, New Jersey, Ohio, South Carolina, and Wisconsin) over multiple rounds. Methods: Households were selected at random using address-based sampling methods. This project includes a cross-sectional baseline survey, 2 or 3 follow-up surveys with an opt-in panel of respondents, and a cross-sectional endline survey. Each round of data collection uses a multimode design through the use of a programmed web survey and a formatted hard copy questionnaire. Participants from the randomly selected households access their personalized surveys through a web survey or mail in a hard copy questionnaire. To maximize responses, these surveys follow a rigorous schedule of various prompts bolstering the survey implementation design, and the participants received a modest monetary incentive. Results: This is an ongoing project with results published separately by the evaluation teams involved with data analysis. Conclusions: The methods used in the first baseline survey informed modifications to the methods used in subsequent statewide surveys. Data collected from this project will provide insight into women’s reproductive health, contraceptive use, and abortion attitudes in the 9 selected states. The long-term goal of the project is to use a data collection methodology that collects data from a representative sample of participants to assess changes in reproductive health behaviors over time. International Registered Report Identifier (IRRID): DERR1-10.2196/40675 %M 36920469 %R 10.2196/40675 %U https://www.researchprotocols.org/2023/1/e40675 %U https://doi.org/10.2196/40675 %U http://www.ncbi.nlm.nih.gov/pubmed/36920469 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e39262 %T Direct-to-Consumer Recruitment Methods via Traditional and Social Media to Aid in Research Accrual for Clinical Trials for Rare Diseases: Comparative Analysis Study %A Applequist,Janelle %A Burroughs,Cristina %A Merkel,Peter A %A Rothenberg,Marc %A Trapnell,Bruce %A Desnick,Robert %A Sahin,Mustafa %A Krischer,Jeffrey %+ Zimmerman School of Advertising & Mass Communications, University of South Florida, 4202 E. Fowler Ave., CIS 1040, Tampa, FL, 33620, United States, 1 (813) 974 4462, applequist@usf.edu %K direct-to-consumer advertising %K clinical trial recruitment %K clinical trial accrual %K research recruitment %K research participant recruitment %K social media recruitment %K web-based recruitment %K patient-centered research %K rare diseases %K clinical trial %D 2023 %7 14.3.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Recruitment into clinical trials is a challenging process, with as many as 40% of studies failing to meet their target sample sizes. The principles of direct-to-consumer (DTC) advertising rely upon novel marketing strategies. The ability to reach expansive audiences in the web-based realm presents a unique opportunity for researchers to overcome various barriers to enrollment in clinical trials. Research has investigated the use of individual web-based platforms to aid in recruitment and accrual into trials; however, a gap in the literature exists, whereby multiple mass communication platforms have yet to be investigated across a range of clinical trials. Objective: There is a need to better understand how individual factors combine to collectively influence trial recruitment. We aimed to test whether DTC recruitment of potentially eligible study participants via social media platforms (eg, Facebook [Meta Platforms Inc] and Twitter [Twitter Inc]) was an effective strategy or whether this acted as an enhancement to traditional (eg, email via contact registries) recruitment strategies through established clinical research sites. Methods: This study tested multiple DTC web-based recruitment efforts (Facebook, Twitter, email, and patient advocacy group [PAG] involvement) across 6 national and international research studies from 5 rare disease consortia. Targeted social media messaging, social media management software, and individual study websites with prescreening questions were used in the Protocol for Increasing Accrual Using Social Media (PRISM). Results: In total, 1465 PRISM website referrals occurred across all 6 studies. Organic (unpaid) Facebook posts (676/1465, 46.14%) and Rare Diseases Clinical Research Network patient contact registry emails (461/1465, 31.47%) represented the most successful forms of engagement. PRISM was successful in accumulating a 40.1% (136/339) lead generation (those who screened positive and consented to share their contact information to be contacted by a clinical site coordinator). Despite the large number of leads generated from PRISM recruitment efforts, the number of patients who were subsequently enrolled in studies was low. Across 6 studies, 3 participants were ultimately enrolled, meaning that 97.8% (133/136) of leads dropped off. Conclusions: The results indicate that although accrual results were low, this is consistent with previously documented challenges of studying populations with rare diseases. Targeted messaging integrated throughout the recruitment process (eg, referral, lead, and accrual) remains an area for further research. Key elements to consider include structuring the communicative workflow in such a way that PAG involvement is central to the process, with clinical site coordinators actively involved after an individual consents to share their contact information. Customized approaches are needed for each population and research study, with observational studies best suited for social media recruitment. As evidenced by lead generation, results suggest that web-based recruitment efforts, coupled with targeted messaging and PAG partnerships, have the potential to supplement clinical trial accrual. %M 36917158 %R 10.2196/39262 %U https://www.jmir.org/2023/1/e39262 %U https://doi.org/10.2196/39262 %U http://www.ncbi.nlm.nih.gov/pubmed/36917158 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e36764 %T Nominal Versus Realized Costs of Recruiting and Retaining a National Sample of Sexual Minority Adolescents in the United States: Longitudinal Study %A Mamey,Mary Rose %A Schrager,Sheree M %A Rhoades,Harmony %A Goldbach,Jeremy T %+ University of Southern California, 3620 S Vermont Ave, Los Angeles, CA, 90089, United States, 1 949 933 4700, maryrosemamey@gmail.com %K cost analysis %K study recruitment %K longitudinal retention %K sexual minority adolescents %K mobile phone %D 2023 %7 2.2.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Web-based recruitment for research studies is becoming increasingly popular and necessary. When compared with the traditional methods of recruitment, these methods may enable researchers to reach more diverse participants in less time. Social media use is highly prevalent among adolescents, and the unique context of social media may be particularly important for the recruitment of sexual minority young people who would not be captured by traditional methods. Objective: This paper described the details of a national web-based study recruitment approach aimed at sexual minority adolescents across the United States, focusing on important details of this relatively novel approach, including cost, time efficiency, and retention outcomes. Methods: This study recruited sexual minority adolescents aged 14-17 years living in the United States through targeted advertisements on Facebook, Instagram, and YouTube and through respondent-driven sampling (RDS). Potential participants completed eligibility screening surveys and were automatically directed to a baseline survey if they were eligible. After baseline survey completion, additional data checks were implemented, and the remaining participants were contacted for recruitment into a longitudinal study (surveys every 6 months for 3 years). Results: Recruitment lasted 44 weeks, and 9843 participants accessed the initial screening survey, with 2732 (27.76%) meeting the eligibility criteria and completing the baseline survey. Of those, 2558 (93.63%) were determined to have provided nonfraudulent, usable study data and 1076 (39.39%) subsequently enrolled in the longitudinal study. Of the baseline sample, 79.05% (2022/2558) was recruited through Facebook and Instagram, 3.05% (78/2558) through YouTube, and 17.9% (458/2558) through RDS. The average cost of recruiting a participant into the study was US $12.98, but the recruitment cost varied by method or platform, with a realized cost of US $13 per participant on Facebook and Instagram, US $24 on YouTube, and US $10 through RDS. Participant differences (sex assigned at birth, race and ethnicity, sexual orientation, region, and urbanicity) were identified between platforms and methods both in terms of overall number of participants and cost per participant. Facebook and Instagram were the most time efficient (approximately 15 days to recruit 100 participants), whereas RDS was the least time efficient (approximately 70 days to recruit 100 participants). Participants recruited through YouTube were the most likely to be longitudinally retained, followed by Facebook and Instagram, and then RDS. Conclusions: Large differences exist in study recruitment cost and efficiency when using social media and RDS. Demographic, region, and urbanicity differences in recruitment methods highlight the need for attention to demographic diversity when planning and implementing recruitment across platforms. Finally, it is more cost-effective to retain than recruit samples, and this study provided evidence that with thorough screening and data quality practices, social media recruitment can result in diverse, highly involved study populations. %M 36729597 %R 10.2196/36764 %U https://www.jmir.org/2023/1/e36764 %U https://doi.org/10.2196/36764 %U http://www.ncbi.nlm.nih.gov/pubmed/36729597 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 7 %N %P e38630 %T Reaching Populations at Risk for HIV Through Targeted Facebook Advertisements: Cost-Consequence Analysis %A Hanna,John J %A Saleh,Sameh N %A Lehmann,Christoph U %A Nijhawan,Ank E %A Medford,Richard J %+ Division of Infectious Diseases and Geographic Medicine, University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd., Dallas, TX, 75390, United States, 1 214 648 0234, john.hanna@utsouthwestern.edu %K human immunodeficiency virus %K social media %K Facebook %K health behavior %K health care seeking behavior %K consumer health %K HIV diagnosis %K HIV testing %D 2023 %7 20.1.2023 %9 Original Paper %J JMIR Form Res %G English %X Background: An undiagnosed HIV infection remains a public health challenge. In the digital era, social media and digital health communication have been widely used to accelerate research, improve consumer health, and facilitate public health interventions including HIV prevention. Objective: We aimed to evaluate and compare the projected cost and efficacy of different simulated Facebook (FB) advertisement (ad) approaches targeting at-risk populations for HIV based on new HIV diagnosis rates by age group and geographic region in the United States. Methods: We used the FB ad platform to simulate (without actually launching) an automatically placed video ad for a 10-day duration targeting at-risk populations for HIV. We compared the estimated total ad audience, daily reach, daily clicks, and cost. We tested ads for the age group of 13 to 24 years (in which undiagnosed HIV is most prevalent), other age groups, US geographic regions and states, and different campaign budgets. We then estimated the ad cost per new HIV diagnosis based on HIV positivity rates and the average health care industry conversion rate. Results: On April 20, 2021, the potential reach of targeted ads to at-risk populations for HIV in the United States was approximately 16 million for all age groups and 3.3 million for age group 13 to 24 years, with the highest potential reach in California, Texas, Florida, and New York. When using different FB ad budgets, the daily reach and daily clicks per US dollar followed a cumulative distribution curve of an exponential function. Using multiple US $10 ten-day ads, the cost per every new HIV diagnosis ranged from US $13.09 to US $37.82, with an average cost of US $19.45. In contrast, a 1-time national ad had a cost of US $72.76 to US $452.25 per new HIV diagnosis (mean US $166.79). The estimated cost per new HIV diagnosis ranged from US $13.96 to US $55.10 for all age groups (highest potential reach and lowest cost in the age groups 20-29 and 30-39 years) and from US $12.55 to US $24.67 for all US regions (with the highest potential reach of 6.2 million and the lowest cost per new HIV diagnosis at US $12.55 in the US South). Conclusions: Targeted personalized FB ads are a potential means to encourage at-risk populations for HIV to be tested, especially those aged 20 to 39 years in the US South, where the disease burden and potential reach on FB are high and the ad cost per new HIV diagnosis is low. Considering the cost efficiency of ads, the combined cost of multiple low-cost ads may be more economical than a single high-cost ad, suggesting that local FB ads could be more cost-effective than a single large-budget national FB ad. %M 36662551 %R 10.2196/38630 %U https://formative.jmir.org/2023/1/e38630 %U https://doi.org/10.2196/38630 %U http://www.ncbi.nlm.nih.gov/pubmed/36662551 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 25 %N %P e44175 %T Sampling Sexual and Gender Minority Youth With UnACoRN (Understanding Affirming Communities, Relationships, and Networks): Lessons From a Web-Based Survey %A Delgado-Ron,Jorge Andrés %A Jeyabalan,Thiyaana %A Watt,Sarah %A Black,Stéphanie %A Gumprich,Martha %A Salway,Travis %+ Reaffirm Collaborative, Centre for Gender and Sexual Health Equity, 1190 Hornby St. (11th floor), Vancouver, BC, V6Z 2K5, Canada, 1 604 806 8881, travis_salway@sfu.ca %K sexual and gender minorities %K transgender persons %K sexual orientation %K conversion therapy %K web-based survey %K surveys and questionnaires %K adolescence %K sexual minority youth %K transgender youth %K same-sex attraction %K gender minority %K health inequality %K online recruitment %K advertisement %K social media recruitment %D 2023 %7 12.1.2023 %9 Original Paper %J J Med Internet Res %G English %X Background: Periodic surveys of sexual and gender minority (SGM) populations are essential for monitoring and investigating health inequities. Recent legislative efforts to ban so-called conversion therapy make it necessary to adapt youth surveys to reach a wider range of SGM populations, including those <18 years of age and those who may not adopt an explicit two-spirit, lesbian, gay, bisexual, transgender, and queer (2S/LGBTQ) identity. Objective: We aimed to share our experiences in recruiting SGM youth through multiple in-person and online channels and to share lessons learned for future researchers. Methods: The Understanding Affirming Communities, Relationships, and Networks (UnACoRN) web-based survey collected anonymous data in English and French from 9679 mostly SGM respondents in the United States and Canada. Respondents were recruited from March 2022 to August 2022 using word-of-mouth referrals, leaflet distribution, bus advertisements, and paid and unpaid campaigns on social media and a pornography website. We analyzed the metadata provided by these and other online resources we used for recruitment (eg, Bitly and Qualtrics) and describe the campaign’s effectiveness by recruitment venue based on calculating the cost per completed survey and other secondary metrics. Results: Most participants were recruited through Meta (13,741/16,533, 83.1%), mainly through Instagram; 88.96% (visitors: 14,888/18,179) of our sample reached the survey through paid advertisements. Overall, the cost per survey was lower for Meta than Pornhub or the bus advertisements. Similarly, the proportion of visitors who started the survey was higher for Meta (8492/18,179, 46.7%) than Pornhub (58/18,179, 1.02%). Our subsample of 7037 residents of Canada had a similar geographic distribution to the general population, with an average absolute difference in proportion by province or territory of 1.4% compared to the Canadian census. Our US subsample included 2521 participants from all US states and the District of Columbia. A total of CAD $8571.58 (the currency exchange rate was US $1=CAD $1.25) was spent across 4 paid recruitment channels (Facebook, Instagram, PornHub, and bus advertisements). The most cost-effective tool of recruitment was Instagram, with an average cost per completed survey of CAD $1.48. Conclusions: UnACoRN recruited nearly 10,000 SGM youth in the United States and Canada, and the cost per survey was CAD $1.48. Researchers using online recruitment strategies should be aware of the differences in campaign management each website or social media platform offers and be prepared to engage with their framing (content selection and delivery) to correct any imbalances derived from it. Those who focus on SGM populations should consider how 2S/LGBTQ-oriented campaigns might deter participation from cisgender or heterosexual people or SGM people not identifying as 2S/LGBTQ, if relevant to their research design. Finally, those with limited resources may select fewer venues with lower cost per completed survey or that appeal more to their specific audience, if needed. %M 36633900 %R 10.2196/44175 %U https://www.jmir.org/2023/1/e44175 %U https://doi.org/10.2196/44175 %U http://www.ncbi.nlm.nih.gov/pubmed/36633900 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 12 %P e40730 %T Avoiding Under- and Overrecruitment in Behavioral Intervention Trials Using Bayesian Sequential Designs: Tutorial %A Bendtsen,Marcus %+ Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, 581 83, Sweden, 46 13 28 10 00, marcus.bendtsen@liu.se %K digital alcohol intervention %K Bayesian sequential design %K sample size %K randomized controlled trial %K trial recruitment %K behavioural intervention %K participant recruitment %K research participants %K research methods %K effect size %K trial procedure %D 2022 %7 16.12.2022 %9 Tutorial %J J Med Internet Res %G English %X Reducing research waste and protecting research participants from unnecessary harm should be top priorities for researchers studying interventions. However, the traditional use of fixed sample sizes exposes trials to risks of under- and overrecruitment by requiring that effect sizes be determined a priori. One mitigating approach is to adopt a Bayesian sequential design, which enables evaluation of the available evidence continuously over the trial period to decide when to stop recruitment. Target criteria are defined, which encode researchers’ intentions for what is considered findings of interest, and the trial is stopped once the scientific question is sufficiently addressed. In this tutorial, we revisit a trial of a digital alcohol intervention that used a fixed sample size of 2129 participants. We show that had a Bayesian sequential design been used, the trial could have ended after collecting data from approximately 300 participants. This would have meant exposing far fewer individuals to trial procedures, including being allocated to the waiting list control condition, and the evidence from the trial could have been made public sooner. %M 36525297 %R 10.2196/40730 %U https://www.jmir.org/2022/12/e40730 %U https://doi.org/10.2196/40730 %U http://www.ncbi.nlm.nih.gov/pubmed/36525297 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 12 %P e40892 %T Challenges in Recruiting University Students for Web-Based Indicated Prevention of Depression and Anxiety: Results From a Randomized Controlled Trial (ICare Prevent) %A Bolinski,Felix %A Kleiboer,Annet %A Neijenhuijs,Koen %A Karyotaki,Eirini %A Wiers,Reinout %A de Koning,Lisa %A Jacobi,Corinna %A Zarski,Anna-Carlotta %A Weisel,Kiona K %A Cuijpers,Pim %A Riper,Heleen %+ Department of Clinical, Neuro, and Developmental Psychology, Amsterdam Public Health Research Institute, Vrije Universiteit Amsterdam, De Boelelaan 1105, Amsterdam, 1081HV, Netherlands, 31 0205985204, f.bolinski@vu.nl %K digital mental health %K students %K indicated prevention %K recruitment %K randomized trial %K mobile phone %D 2022 %7 14.12.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Depression and anxiety are common mental health conditions in college and university student populations. Offering transdiagnostic, web-based prevention programs such as ICare Prevent to those with subclinical complaints has the potential to reduce some barriers to receiving help (eg, availability of services, privacy considerations, and students’ desire for autonomy). However, uptake of these interventions is often low, and accounts of recruitment challenges are needed to complement available effectiveness research in student populations. Objective: The aims of this study were to describe recruitment challenges together with effective recruitment strategies for ICare Prevent and provide basic information on the intervention’s effectiveness. Methods: A 3-arm randomized controlled trial was conducted in a student sample with subclinical symptoms of depression and anxiety on the effectiveness of an individually guided (human support and feedback on exercises provided after each session, tailored to each participant) and automatically guided (computer-generated messages provided after each session, geared toward motivation) version of ICare Prevent, a web-based intervention with transdiagnostic components for the indicated prevention of depression and anxiety. The intervention was compared with care as usual. Descriptive statistics were used to outline recruitment challenges and effective web-based and offline strategies as well as students’ use of the intervention. A basic analysis of intervention effects was conducted using a Bayesian linear mixed model, with Bayes factors reported as the effect size. Results: Direct recruitment through students’ email addresses via the central student administration was the most effective strategy. Data from 35 participants were analyzed (individually guided: n=14, 40%; automatically guided: n=8, 23%; care as usual: n=13, 37%). Use of the intervention was low, with an average of 3 out of 7 sessions (SD 2.9) completed. The analyses did not suggest any intervention effects other than anecdotal evidence (all Bayes factors10≤2.7). Conclusions: This report adds to the existing literature on recruitment challenges specific to the student population. Testing the feasibility of recruitment measures and the greater involvement of the target population in their design, as well as shifting from direct to indirect prevention, can potentially help future studies in the field. In addition, this report demonstrates an alternative basic analytical strategy for underpowered randomized controlled trials. Trial Registration: International Clinical Trials Registry Platform NTR6562; https://tinyurl.com/4rbexzrk International Registered Report Identifier (IRRID): RR2-10.1186/s13063-018-2477-y %M 36515986 %R 10.2196/40892 %U https://www.jmir.org/2022/12/e40892 %U https://doi.org/10.2196/40892 %U http://www.ncbi.nlm.nih.gov/pubmed/36515986 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 12 %P e40298 %T Social Media Recruitment Strategies to Recruit Pregnant Women Into a Longitudinal Observational Cohort Study: Usability Study %A Pekarsky,Chloe %A Skiffington,Janice %A Leijser,Lara M %A Slater,Donna %A Metcalfe,Amy %+ Department of Obstetrics and Gynecology, University of Calgary, 2500 University Dr NW, Calgary, AB, T2N 1N4, Canada, 1 4035606717, chloe.pekarsky@ucalgary.ca %K social media %K Facebook %K Twitter %K Instagram %K recruitment %K pregnancy %K surveys %K questionnaires %K fraudulent responses %D 2022 %7 12.12.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Use of social media for study recruitment is becoming increasingly common. Previous studies have typically focused on using Facebook; however, there are limited data to support the use of other social media platforms for participant recruitment, notably in the context of a pregnancy study. Objective: Our study aimed to evaluate the effectiveness of Facebook, Twitter, and Instagram in recruiting a representative sample of pregnant women in a longitudinal pregnancy cohort study in Calgary, Alberta, between September 27, 2021, and April 24, 2022. Methods: Paid advertisements were targeted at 18- to 50-year-old women in Calgary, with interests in pregnancy. Data regarding reach, link clicks, and costs were collected through Facebook Ads Manager (Meta Platforms, Inc) and Twitter Analytics (Twitter, Inc). The feasibility of each platform for recruitment was assessed based on the recruitment rate and cost-effectiveness. The demographic characteristics of the participants recruited through each source were compared using the chi-square test. Results: Paid advertisements reached 159,778 social media users, resulting in 2390 link clicks and 324 participants being recruited. Facebook reached and recruited the highest number of participants (153/324, 47.2%), whereas Instagram saw the highest number of link clicks relative to the number of users who saw the advertisement (418/19,764, 2.11%). Facebook and Instagram advertisements were cost-effective, with an average cost-per-click of CAD $0.65 (US $0.84; SD $0.27, US $0.35) and cost-per-completer of CAD $7.89 (US $10.25; SD CAD $4.08, US $5.30). Twitter advertisements were less successful in terms of recruitment and costs. Demographic characteristics of participants did not differ based on recruitment source, except for education and income, where more highly educated and higher-income participants were recruited through Instagram or Twitter. Many issues related to fraudulent responses were encountered throughout the recruitment period. Conclusions: Paid social media advertisements (especially Facebook and Instagram) are feasible and cost-effective methods for recruiting a large sample of pregnant women for survey-based research. However, future research should be aware of the potential for fraudulent responses when using social media for recruitment and consider strategies to mitigate this problem. %M 36508244 %R 10.2196/40298 %U https://www.jmir.org/2022/12/e40298 %U https://doi.org/10.2196/40298 %U http://www.ncbi.nlm.nih.gov/pubmed/36508244 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 12 %P e39488 %T Data Quality and Study Compliance Among College Students Across 2 Recruitment Sources: Two Study Investigation %A Braitman,Abby L %A Strowger,Megan %A Shipley,Jennifer L %A Ortman,Jordan %A MacIntyre,Rachel I %A Bauer,Elizabeth A %+ Department of Psychology, Old Dominion University, 250 Mills Godwin Bldg, Norfolk, VA, 23529, United States, 1 757 683 3708, abraitma@odu.edu %K data quality %K attention checks %K recruitment %K retention %K college students %K mobile phone %D 2022 %7 9.12.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Models of satisficing suggest that study participants may not fully process survey items and provide accurate responses when survey burden is higher and when participant motivation is lower. Participants who do not fully process survey instructions can reduce a study’s power and hinder generalizability. Common concerns among researchers using self-report measures are data quality and participant compliance. Similarly, attrition can hurt the power and generalizability of a study. Objective: Given that college students comprise most samples in psychological studies, especially examinations of student issues and psychological health, it is critical to understand how college student recruitment sources impact data quality (operationalized as attention check items with directive instructions and correct answers) and retention (operationalized as the completion of follow-up surveys over time). This examination aimed to examine the following: whether data quality varies across recruitment sources, whether study retention varies across recruitment sources, the impact of data quality on study variable associations, the impact of data quality on measures of internal consistency, and whether the demographic qualities of participants significantly vary across those who failed attention checks versus those who did not. Methods: This examination was a follow-up analysis of 2 previously published studies to explore data quality and study compliance. Study 1 was a cross-sectional, web-based survey examining college stressors and psychological health (282/407, 69.3% female; 230/407, 56.5% White, 113/407, 27.8% Black; mean age 22.65, SD 6.73 years). Study 2 was a longitudinal college drinking intervention trial with an in-person baseline session and 2 web-based follow-up surveys (378/528, 71.6% female; 213/528, 40.3% White, 277/528, 52.5% Black; mean age 19.85, SD 1.65 years). Attention checks were included in both studies to assess data quality. Participants for both studies were recruited from a psychology participation pool (a pull-in method; for course credit) and the general student body (a push-out method; for monetary payment or raffle entry). Results: A greater proportion of participants recruited through the psychology pool failed attention checks in both studies, suggesting poorer data quality. The psychology pool was also associated with lower retention rates over time. After screening out those who failed attention checks, some correlations among the study variables were stronger, some were weaker, and some were fairly similar, potentially suggesting bias introduced by including these participants. Differences among the indicators of internal consistency for the study measures were negligible. Finally, attention check failure was not significantly associated with most demographic characteristics but varied across some racial identities. This suggests that filtering out data from participants who failed attention checks may not limit sample diversity. Conclusions: Investigators conducting college student research should carefully consider recruitment and include attention checks or other means of detecting poor quality data. Recommendations for researchers are discussed. %M 36485020 %R 10.2196/39488 %U https://formative.jmir.org/2022/12/e39488 %U https://doi.org/10.2196/39488 %U http://www.ncbi.nlm.nih.gov/pubmed/36485020 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 12 %P e37507 %T Assessing Associations Between COVID-19 Symptomology and Adverse Outcomes After Piloting Crowdsourced Data Collection: Cross-sectional Survey Study %A Flaks-Manov,Natalie %A Bai,Jiawei %A Zhang,Cindy %A Malpani,Anand %A Ray,Stuart C %A Taylor,Casey Overby %+ Johns Hopkins University School of Medicine, 3101 Wyman Park Dr., Baltimore, MD, 21218, United States, 1 443 287 6657, cot@jhu.edu %K COVID-19 %K coronavirus %K symptoms %K symptomology %K crowdsourcing %K adverse outcomes %K data quality %D 2022 %7 6.12.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Crowdsourcing is a useful way to rapidly collect information on COVID-19 symptoms. However, there are potential biases and data quality issues given the population that chooses to participate in crowdsourcing activities and the common strategies used to screen participants based on their previous experience. Objective: The study aimed to (1) build a pipeline to enable data quality and population representation checks in a pilot setting prior to deploying a final survey to a crowdsourcing platform, (2) assess COVID-19 symptomology among survey respondents who report a previous positive COVID-19 result, and (3) assess associations of symptomology groups and underlying chronic conditions with adverse outcomes due to COVID-19. Methods: We developed a web-based survey and hosted it on the Amazon Mechanical Turk (MTurk) crowdsourcing platform. We conducted a pilot study from August 5, 2020, to August 14, 2020, to refine the filtering criteria according to our needs before finalizing the pipeline. The final survey was posted from late August to December 31, 2020. Hierarchical cluster analyses were performed to identify COVID-19 symptomology groups, and logistic regression analyses were performed for hospitalization and mechanical ventilation outcomes. Finally, we performed a validation of study outcomes by comparing our findings to those reported in previous systematic reviews. Results: The crowdsourcing pipeline facilitated piloting our survey study and revising the filtering criteria to target specific MTurk experience levels and to include a second attention check. We collected data from 1254 COVID-19–positive survey participants and identified the following 6 symptomology groups: abdominal and bladder pain (Group 1); flu-like symptoms (loss of smell/taste/appetite; Group 2); hoarseness and sputum production (Group 3); joint aches and stomach cramps (Group 4); eye or skin dryness and vomiting (Group 5); and no symptoms (Group 6). The risk factors for adverse COVID-19 outcomes differed for different symptomology groups. The only risk factor that remained significant across 4 symptomology groups was influenza vaccine in the previous year (Group 1: odds ratio [OR] 6.22, 95% CI 2.32-17.92; Group 2: OR 2.35, 95% CI 1.74-3.18; Group 3: OR 3.7, 95% CI 1.32-10.98; Group 4: OR 4.44, 95% CI 1.53-14.49). Our findings regarding the symptoms of abdominal pain, cough, fever, fatigue, shortness of breath, and vomiting as risk factors for COVID-19 adverse outcomes were concordant with the findings of other researchers. Some high-risk symptoms found in our study, including bladder pain, dry eyes or skin, and loss of appetite, were reported less frequently by other researchers and were not considered previously in relation to COVID-19 adverse outcomes. Conclusions: We demonstrated that a crowdsourced approach was effective for collecting data to assess symptomology associated with COVID-19. Such a strategy may facilitate efficient assessments in a dynamic intersection between emerging infectious diseases, and societal and environmental changes. %M 36343205 %R 10.2196/37507 %U https://formative.jmir.org/2022/12/e37507 %U https://doi.org/10.2196/37507 %U http://www.ncbi.nlm.nih.gov/pubmed/36343205 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 12 %P e37609 %T Using Social Media to Engage Justice-Involved Young Adults in Digital Health Interventions for Substance Use: Pilot Feasibility Survey Study %A Harrison,Anna %A Folk,Johanna %A Rodriguez,Christopher %A Wallace,Amanda %A Tolou-Shams,Marina %+ Mental Health Service, San Francisco Veterans Affairs Health Care System, 4150 Clement Street, San Francisco, CA, 94121, United States, 1 415 221 4810, anna.harrison@ucsf.edu %K substance use %K young adult %K social media %K digital health technology %K mobile phone %D 2022 %7 2.12.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Young adults involved in the justice system have high rates of substance use disorders and low rates of treatment engagement. Most justice-involved young adults are supervised in the community—not incarcerated in jail or prison—where they have ongoing access to substances and experience significant barriers to care. When they do engage in treatment, they tend to have worse outcomes than justice-involved adolescents and older adults. Despite the need to develop targeted treatments, there are unique challenges in recruiting this population into clinical research. Digital health technology offers many novel avenues for recruiting justice-involved young adults into clinical research studies and disseminating substance use disorder treatments to justice-involved young adults. Because the vast majority of young adults regularly use one or more social media platforms, social media may offer a cost-effective and efficient way to achieve these goals. Objective: This study aimed to describe the process and feasibility of using social media platforms (Facebook and Reddit) to recruit justice-involved young adults into clinical research. Justice-involved young adults recruited from these platforms completed a survey assessing the acceptability of digital health interventions to address substance use in this population. Methods: Justice-involved young adults (aged 18-24 years) were recruited through paid advertisements placed on Facebook and Reddit. Participants responded to a web-based survey focused on their substance use, treatment use history, and acceptability of various digital health interventions focused on substance use. Results: A national sample of justice-involved young adults were successfully enrolled and completed the survey (N=131). Participants were racially diverse (8/131, 6.1% American Indian individuals; 27/131, 20.6% Asian individuals; 23/131, 17.6% Black individuals; 26/131, 19.8% Latinx individuals; 8/131, 6.1% Pacific Islander individuals; 49/131, 37.4% White individuals; and 2/131, 1.5% individuals who identified as “other” race and ethnicity). Advertisements were cost-effective (US $0.66 per click on Facebook and US $0.47 per click on Reddit). More than half (72/131, 54.9%) of the participants were on probation or parole in the past year and reported hazardous alcohol (54/131, 51.9%) or drug (66/131, 57.4%) use. Most of the participants (103/131, 78.6%) were not currently participating in substance use treatment. Nearly two-third (82/131, 62.6%) of the participants were willing to participate in one or more hypothetical digital health interventions. Conclusions: Social media is a feasible and cost-effective method for reaching justice-involved young adults to participate in substance use research trials. With limited budgets, researchers can reach a broad audience, many of whom could benefit from treatment but are not currently engaged in care. Proposed digital health interventions focusing on reducing substance use, such as private Facebook groups, SMS text message–based appointment reminders, and coaching, had high acceptability. Future work will build on these findings to develop substance use treatment interventions for this population. %M 36459404 %R 10.2196/37609 %U https://formative.jmir.org/2022/12/e37609 %U https://doi.org/10.2196/37609 %U http://www.ncbi.nlm.nih.gov/pubmed/36459404 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 11 %P e37505 %T The Impact of Social Influence on the Intention to Use Physician Rating Websites: Moderated Mediation Analysis Using a Mixed Methods Approach %A Guetz,Bernhard %A Bidmon,Sonja %+ Department of Marketing and International Management, Alpen-Adria-Universitaet Klagenfurt, Universitaetsstrasse 65-67, Klagenfurt am Woerthersee, 9020, Austria, 43 6508611182, beguetz@edu.aau.at %K social influence %K eHealth literacy %K patient satisfaction %K physician rating websites %D 2022 %7 14.11.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Physician rating websites (PRWs) have become increasingly important in the cross-section between health and digitalization. Social influence plays a crucial role in human behavior in many domains of life, as can be demonstrated by the increase in high-profile influential individuals such as social media influencers (SMIs). Particularly in the health-specific environment, the opinion of family and friends has a significant influence on health-related decisions. However, so far, there has been little discussion about the role of social influence as an antecedent of behavioral intention to use PRWs. Objective: On the basis of theories of social psychology and technology acceptance and theories from the economic perspective, this study aimed to evaluate the impact of social influence on the behavioral intention to use PRWs. Methods: We conducted 2 studies by applying a mixed methods approach including a total of 712 participants from the Austrian population. The impact of social influence on the behavioral intention to use PRWs was investigated through linear regression and mediation and moderated mediation analysis using the PROCESS macro 4.0 in SPSS 27 (IBM Corp). Results: The 2 studies show similar results. In study 1, an experiment, no direct effect of social influence on the behavioral intention to use PRWs could be detected. However, an indirect effect of social influence on the behavioral intention to use PRWs via credibility (b=0.572; P=.005) and performance expectancy (b=0.340; P<.001) could be confirmed. The results of study 2, a cross-sectional study, demonstrate that social influence seems to have a direct impact on the behavioral intention to use PRWs (b=0.410; P<.001). However, when calculating the proposed mediation model, it becomes clear that this impact may partly be explained through the 2 mediator variables—credibility (b=0.208; P<.001) and performance expectancy (b=0.312; P<.001). In contrast to the observed direct and indirect effect, neither demographic nor psychographic variables have a significant moderating impact on the influencing chain in study 2. Conclusions: This study provides an indication that social influence has at least an indirect impact on the behavioral intention to use PRWs. It was observed that this impact is exerted through credibility and performance expectancy. According to the findings of both studies, social influence has the potential to boost the use of PRWs. As a result, these web-based networks might be a promising future interface between health care and digitalization, allowing health care practitioners to gain a beneficial external impact while also learning from feedback. Social influence nowadays is not just limited to friends and family but can also be exerted by SMIs in the domain of PRW use. Thus, from a marketing perspective, PRW providers could think of collaborating with SMIs, and our results could contribute to stimulating discussion in this vein. %M 36374547 %R 10.2196/37505 %U https://www.jmir.org/2022/11/e37505 %U https://doi.org/10.2196/37505 %U http://www.ncbi.nlm.nih.gov/pubmed/36374547 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 9 %P e35035 %T Using Social Media to Facilitate Communication About Women’s Testing: Tool Validation Study %A Coffin,Tara %A Bowen,Deborah %A Lu,Karen %A Swisher,Elizabeth M %A Rayes,Nadine %A Norquist,Barbara %A Blank,Stephanie V %A Levine,Douglas A %A Bakkum-Gamez,Jamie Nadine %A Fleming,Gini F %A I Olopade,Olufunmilayo %A Romero,Iris %A D'Andrea,Alan %A Nebgen,Denise R %A Peterson,Christine %A Munsell,Mark F %A Gavin,Kathleen %A Crase,Jamie %A Polinsky,Deborah %A Lechner,Rebecca %+ University of Washington, 1400 NE Campus Parkway, Seattle, WA, 98195-4550, United States, 1 (206) 543 2100, tbcoffin@uw.edu %K ovarian cancer %K hereditary cancer %K genetic testing %K online social media recruitment %K Facebook %K social media %K mobile phone %D 2022 %7 26.9.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Strong participant recruitment practices are critical to public health research but are difficult to achieve. Traditional recruitment practices are often time consuming, costly, and fail to adequately target difficult-to-reach populations. Social media platforms such as Facebook are well-positioned to address this area of need, enabling researchers to leverage existing social networks and deliver targeted information. The MAGENTA (Making Genetic Testing Accessible) study aimed to improve the availability of genetic testing for hereditary cancer susceptibility in at-risk individuals through the use of a web-based communication system along with social media advertisements to improve reach. Objective: This paper is aimed to evaluate the effectiveness of Facebook as an outreach tool for targeting women aged ≥30 years for recruitment in the MAGENTA study. Methods: We designed and implemented paid and unpaid social media posts with ongoing assessment as a primary means of research participant recruitment in collaboration with patient advocates. Facebook analytics were used to assess the effectiveness of paid and unpaid outreach efforts. Results: Over the course of the reported recruitment period, Facebook materials had a reach of 407,769 people and 57,248 (14.04%) instances of engagement, indicating that approximately 14.04% of people who saw information about the study on Facebook engaged with the content. Paid advertisements had a total reach of 373,682. Among those reached, just <15% (54,117/373,682, 14.48%) engaged with the page content. Unpaid posts published on the MAGENTA Facebook page resulted in a total of 34,087 reach and 3131 instances of engagement, indicating that around 9.19% (3131/34,087) of people who saw unpaid posts engaged. Women aged ≥65 years reported the best response rate, with approximately 43.95% (15,124/34,410) of reaches translating to engagement. Among the participants who completed the eligibility questionnaire, 27.44% (3837/13,983) had heard about the study through social media or another webpage. Conclusions: Facebook is a useful way of enhancing clinical trial recruitment of women aged ≥30 years who have a potentially increased risk for ovarian cancer by promoting news stories over social media, collaborating with patient advocacy groups, and running paid and unpaid campaigns. Trial Registration: ClinicalTrials.gov NCT02993068; https://clinicaltrials.gov/ct2/show/NCT02993068 %M 36155347 %R 10.2196/35035 %U https://formative.jmir.org/2022/9/e35035 %U https://doi.org/10.2196/35035 %U http://www.ncbi.nlm.nih.gov/pubmed/36155347 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 9 %P e39046 %T Digital Global Recruitment for Women’s Health Research: Cross-sectional Study %A Rodriguez,Erika %A Peer,Komal %A Fruh,Victoria %A James,Kaitlyn %A Williams,Anna %A de Figueiredo Veiga,Alexis %A Winter,Michael R %A Shea,Amanda %A Aschengrau,Ann %A Lane,Kevin J %A Mahalingaiah,Shruthi %+ Department of Environmental Health, Harvard TH Chan School of Public Health, 665 Huntington Avenue, Boston, MA, 02115, United States, 1 6174147305, shruthi@hsph.harvard.edu %K digital recruitment %K internet %K menstrual tracking app %K menstrual %K menstruation %K reproductive health %K reproduction %K mobile health %K menstrual health %K mHealth %K women's health %K Facebook %K social media %K epidemiology research %K in-app message %K tracking app %K health application %K health app %K eHealth %K digital health %K health technology %K ovulation %K recruit %K attrition %K research subject %K participation %K participant %D 2022 %7 14.9.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: With the increased popularity of mobile menstrual tracking apps and boosted Facebook posts, there is a unique opportunity to recruit research study participants from across the globe via these modalities to evaluate women’s health. However, no studies to date have assessed the feasibility of using these recruitment sources for epidemiological research on ovulation and menstruation. Objective: The objective of this study was to assess the feasibility of recruiting a diverse sample of women to an epidemiological study of ovulation and menstruation (OM) health (OM Global Health Study) using digital recruitment sources. The feasibility and diversity were assessed via click and participation rates, geographic location, BMI, smoking status, and other demographic information. Methods: Participants were actively recruited via in-app messages using the menstrual tracking app Clue (BioWink GmbH) and a boosted Facebook post by DivaCup (Diva International Inc.). Other passive recruitment methods also took place throughout the recruitment period (eg, email communications, blogs, other social media). The proportion of participants who visited the study website after viewing and clicking the hypertext link (click rates) in the in-app messages and boosted Facebook post and the proportion of participants who completed the surveys per the number of completed consent and eligibility screeners (participation rates) were used to quantify the success of recruiting participants to the study website and study survey completion, respectively. Survey completion was defined as finishing the pregnancy and birth history section of the OM Global Health Study questionnaire. Results: The recruitment period was from February 27, 2018, through January 24, 2020. In-app messages and the boosted Facebook post were seen by 104,000 and 21,400 people, respectively. Overall, 215 participants started the OM Global Health Study survey, of which 140 (65.1%), 39 (18.1%), and 36 (16.8%) participants were recruited via the app, the boosted Facebook post, and other passive recruitment methods, respectively. The click rate via the app was 18.9% (19,700 clicks/104,000 ad views) and 1.6% via the boosted Facebook post (340 clicks/21,400 ad views.) The overall participation rate was 44.6% (198/444), and the average participant age was 21.8 (SD 6.1) years. In terms of geographic and racial/ethnic diversity, 91 (44.2%) of the participants resided outside the United States and 147 (70.7%) identified as non-Hispanic White. In-app recruitment produced the most geographically diverse stream, with 44 (32.8%) of the 134 participants in Europe, 77 (57.5%) in North America, and 13 (9.8%) in other parts of the world. Both human error and nonhuman procedural breakdowns occurred during the recruitment process, including a computer programming error related to age eligibility and a hacking attempt by an internet bot. Conclusions: In-app messages using the menstrual tracking app Clue were the most successful method for recruiting participants from many geographic regions and producing the greatest numbers of started and completed surveys. This study demonstrates the utility of digital recruitment to enroll participants from diverse geographic locations and provides some lessons to avoid technical recruitment errors in future digital recruitment strategies for epidemiological research. %M 35969168 %R 10.2196/39046 %U https://formative.jmir.org/2022/9/e39046 %U https://doi.org/10.2196/39046 %U http://www.ncbi.nlm.nih.gov/pubmed/35969168 %0 Journal Article %@ 2562-0959 %I JMIR Publications %V 5 %N 3 %P e35379 %T Participation in Clinical Trials Among Academic Dermatologists Affiliated With Veterans Affairs Hospitals: Survey Study %A Sivesind,Torunn %A D'Angelo,Josephine %A Khazova,Tatyana %A Hassan,Shahzeb %A Kamara,Michael %A Wallace,Elizabeth %A Dunnick,Cory %A Dellavalle,Robert %+ Dermatology Service, Rocky Mountain Regional Veterans Affairs Medical Center, US Department of Veterans Affairs, Eastern Colorado Health Care System, 1700 N Wheeling St, Room E1-342, Aurora, CO, 80045, United States, 1 7208575562, robert.dellavalle@cuanschutz.edu %K dermatology %K dermatologists %K clinical trial %K COVID-19 %K basal cell carcinoma %K psoriasis, atopic dermatitis %K Veterans Affairs %K carcinoma %K cancer therapy %K dermatologist %K pandemic %D 2022 %7 12.9.2022 %9 Original Paper %J JMIR Dermatol %G English %X Background: Clinical trials have led to the development of new and effective therapies for many dermatologic conditions. To our knowledge, there is no published study that has quantified and described the degree of involvement in clinical trials among academic dermatologists and their university affiliates. Objective: The purpose of this study was to characterize the involvement of academic dermatology departments in clinical trials research. Methods: An online survey was sent to 211 Veterans Affairs (VA)–employed dermatologists. It comprised 20 questions related to the number of clinical trials, support staff dedicated to clinical research, skin diseases studied, and the effect of the COVID-19 pandemic on conducting clinical research. Three rounds of survey invitations were sent over a 3-month period (March to May 2021). Data from all survey responses were reviewed for quantitative and descriptive analyses of the key outcome measures. Results: A total of 48 dermatologists completed the survey and provided their university affiliations and details of involvement in clinical trials research. Over half of participants (n=25, 58.1%) with a university affiliate reported that their affiliated dermatology department had a dedicated clinical trials unit. Basal cell carcinoma was the most frequently studied skin condition (n=9, 18.8%), followed by atopic dermatitis and psoriasis (n=4, 8.3% each); 66.7% of participants reported no current clinical trials participation. Of those conducting clinical trials, 87% (n=18) noted that COVID-19 was a barrier to conducting trials, with 52.2% (n=11) citing disrupted or decreased trials due to the pandemic. Conclusions: Although many dermatologists with university affiliations reported having a dedicated clinical trials unit at their institution, a majority of those surveyed reported not taking part in any active trials. Overall, the diseases investigated in academic clinical trials appear to follow national trends, though some of the top dermatological diseases are underrepresented in clinical trials research. A key limitation of our study was the low response rate (~23%) and that the survey responses from the sample of VA-based dermatologists may not be generalizable to all academic dermatology departments in the United States. The effect of the COVID-19 pandemic appeared to play a significant role in disrupting active trials. %M 36187494 %R 10.2196/35379 %U https://derma.jmir.org/2022/3/e35379 %U https://doi.org/10.2196/35379 %U http://www.ncbi.nlm.nih.gov/pubmed/36187494 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 8 %P e40015 %T Testing the Effectiveness of an Animated Decision Aid to Improve Recruitment of Control Participants in a Case-Control Study: Web-Based Experiment %A Stoffel,Sandro T %A Law,Jing Hui %A Kerrison,Robert %A Brewer,Hannah R %A Flanagan,James M %A Hirst,Yasemin %+ Department of Behavioural Science and Health, University College London, Gower Street, London, WC1E 6BT, United Kingdom, 44 2076791615, y.hirst@ucl.ac.uk %K animation %K research participation %K online experiment %K case-control %K recruitment %K decision %K effectiveness %K epidemiology %K recruitment %K online %K experiment %K volunteer %K survey %K willingness %K data %K health research %K research %D 2022 %7 26.8.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Participation in case-control studies is crucial in epidemiological research. The self-sampling bias, low response rate, and poor recruitment of population representative controls are often reported as limitations of case-control studies with limited strategies to improve participation. With greater use of web-based methods in health research, there is a further need to understand the effectiveness of different tools to enhance informed decision-making and willingness to take part in research. Objective: This study tests whether the inclusion of an animated decision aid in the recruitment page of a study website can increase participants’ intentions to volunteer as controls. Methods: A total of 1425 women were included in a web-based experiment and randomized to one of two experimental conditions: one in which they were exposed to a simulated website that included the animation (animation; n=693, 48.6%), and one in which they were exposed to the simulated website without the animation (control; n=732, 51.4%). The simulated website was adapted from a real website for a case-control study, which invites people to consider taking part in a study that investigates differences in purchasing behaviors between women with and without ovarian cancer and share their loyalty card data collected through 2 high street retailers with the researchers. After exposure to the experimental manipulation, participants were asked to state (1) their intention to take part in the case-control study, (2) whether they would be willing to share their loyalty card for research, and (3) their willingness to be redirected to the real website after completing the survey. Data were assessed using ordinal and binary logistic regression, reported in percentages (%), adjusted odds ratio (AOR), and 95% confidence intervals. Results: Including the animation in the simulated website did not increase intentions to participate in the study (AOR 1.09; 95% CI 0.88-1.35) or willingness to visit the real study website after the survey (control 50.5% vs animation 52.6%, AOR 1.08; 95% CI 0.85-1.37). The animation, however, increased the participants’ intentions to share the data from their loyalty cards for research in general (control 17.9% vs animation 26%; AOR 1.64; 95% CI 1.23-2.18). Conclusions: While the results of this study indicate that the animated decision aid did not lead to greater intention to take part in our web-based case-control study, they show that they can be effective in increasing people’s willingness to share sensitive data for health research. %M 36018628 %R 10.2196/40015 %U https://www.jmir.org/2022/8/e40015 %U https://doi.org/10.2196/40015 %U http://www.ncbi.nlm.nih.gov/pubmed/36018628 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 3 %P e38514 %T Creating and Implementing a Principal Investigator Tool Kit for Enhancing Accrual to Late Phase Clinical Trials: Development and Usability Study %A Higgins,Kristin A %A Thomas,Alexandra %A Soto,Nancy %A Paulus,Rebecca %A George,Thomas J %A Julian,Thomas B %A Hartson Stine,Sharon %A Markham,Merry Jennifer %A Werner-Wasik,Maria %+ Winship Cancer Institute, Emory University, 1365 C Clifton Road Northeast, Atlanta, GA, 30322, United States, 1 (404) 778 0603, kristin.higgins@emory.edu %K clinical trial accrual %K social media tools %K principal investigator %K PI toolkit %K oncology %K clinical trial %K tool %K resources %K patient %K investigators %K accrual %K development %K engagement %K study %K community %K planning %K activation %K social media %D 2022 %7 25.8.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: Accrual to oncology clinical trials remains a challenge, particularly during the COVID-19 pandemic. For late phase clinical trials funded by the National Cancer Institute, the development of these research protocols is a resource-intensive process; however, mechanisms to optimize patient accrual after trial activation are underdeveloped across the National Clinical Trial Network (NCTN). Low patient accrual can lead to the premature closure of clinical trials and can ultimately delay the availability of new, potentially life-saving therapies in oncology. Objective: The purpose of this study is to formally create an easily implemented tool kit of resources for investigators of oncology clinical trials within the NCTN, specifically the NRG Oncology cooperative group, in order to optimize patient accrual. Methods: NRG Oncology sought to formally develop a tool kit of resources to use at specific time points during the lifetime of NRG Oncology clinical trials. The tools are clearly described and involve the facilitation of engagement of the study principal investigator with the scientific and patient advocate community during the planning, activation, and accrual periods. Social media tools are also leveraged to enhance such engagement. The principal investigator (PI) tool kit was created in 2019 and thereafter piloted with the NRG Oncology/Alliance NRG-LU005 phase II or III trial in small-cell lung cancer. The PI tool kit was developed by the NRG Oncology Protocol Operations Management committee and was tested with the NRG/Alliance LU005 randomized trial within the NCTN. Results: NRG Oncology/Alliance NRG-LU005 has seen robust enrollment, currently 127% of the projected accrual. Importantly, many of the tool kit elements are already being used in ongoing NRG Oncology trials, with 56% of active NRG trials using at least one element of the PI tool kit and all in-development trials offered the resource. This underscores the feasibility and potential benefits of deploying the PI tool kit across all NRG Oncology trials moving forward. Conclusions: While clinical trial accrual can be challenging, the PI tool kit has been shown to augment accrual in a low-cost and easily implementable fashion. It could be widely and consistently deployed across the NCTN to improve accrual in oncology clinical trials. Trial Registration: ClinicalTrials.gov NCT03811002; https://clinicaltrials.gov/ct2/show/NCT03811002 %M 36006678 %R 10.2196/38514 %U https://cancer.jmir.org/2022/3/e38514 %U https://doi.org/10.2196/38514 %U http://www.ncbi.nlm.nih.gov/pubmed/36006678 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 8 %P e38015 %T Social Media Use for Research Participant Recruitment: Integrative Literature Review %A Darko,Elizabeth Mirekuwaa %A Kleib,Manal %A Olson,Joanne %+ College of Health Sciences, Faculty of Nursing, Edmonton Clinic Health Academy, University of Alberta, 11405-87 Avenue, Edmonton, AB, T6G 1C9, Canada, 1 7807826810, darko@ualberta.ca %K advertisement %K recruitment %K research participants %K social media %K mobile phone %D 2022 %7 4.8.2022 %9 Review %J J Med Internet Res %G English %X Background: Social media tools have provided health researchers with the opportunity to engage with communities and groups in a nonconventional manner to recruit participants for health research. Using social media to advertise research opportunities and recruit participants facilitates accessibility to participants from broad geographical areas and diverse populations. However, little guidance is provided by ethics review boards for researchers to effectively use this recruitment method in their research. Objective: This study sought to explore the literature on the use of social media for participant recruitment for research studies and identify the best practices for recruiting participants using this method. Methods: An integrative review approach was used to synthesize the literature. A total of 5 health sciences databases, namely, EMBASE (Ovid), MEDLINE (Ovid and EBSCOhost), PsycINFO (Ovid), Scopus (Elsevier), and CINAHL Plus with Full Text (EBSCOhost), were searched using predefined keywords and inclusion and exclusion criteria. The initial search was conducted in October 2020 and was updated in February 2022. Descriptive and content analyses were applied to synthesize the results, and the findings are presented in a narrative and tabular format. Results: A total of 96 records were included in this review, 83 (86%) from the initial search and 13 (14%) from the updated search. The publication year ranged between 2011 and 2022, with most publications (63/96, 66%) being from the United States. Regarding recruitment strategy, 45% (43/96) of the studies exclusively used social media, whereas 51% (49/96) used social media in conjunction with other strategies. The remaining 4% (4/96) provided guidelines and recommendations for social media recruitment. Notably, 38% (36/96) of these studies involved hard-to-reach populations. The findings also revealed that the use of social media is a cost-effective and efficient strategy for recruiting research participants. Despite the expanded use across different populations, there is limited participation of older adults in social media recruitment. Conclusions: This review provides important insights into the current use of social media for health research participant recruitment. Ethics boards and research support services in academic institutions are encouraged to explicitly provide researchers with guidelines on the use of social media for health research participant recruitment. A preliminary guideline prepared based on the findings of this review is proposed to spark further development in this area. %M 35925655 %R 10.2196/38015 %U https://www.jmir.org/2022/8/e38015 %U https://doi.org/10.2196/38015 %U http://www.ncbi.nlm.nih.gov/pubmed/35925655 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 8 %P e33309 %T Comparing Web-Based Venues to Recruit Gay, Bisexual, and Other Cisgender Men Who Have Sex With Men to a Large HIV Prevention Service in Brazil: Evaluation Study %A Bezerra,Daniel Rodrigues Barros %A Jalil,Cristina Moreira %A Jalil,Emilia Moreira %A Coelho,Lara Esteves %A Netto,Eduardo Carvalheira %A Freitas,Josias %A Monteiro,Laylla %A Santos,Toni %A Souza,Cleo %A Hoagland,Brenda %A Veloso,Valdilea Gonçalves %A Grinsztejn,Beatriz %A Cardoso,Sandra Wagner %A Torres,Thiago Silva %+ Fundação Oswaldo Cruz, Instituto Nacional de Infectologia Evandro Chagas, Av Brasil 4365 Manguinhos, Rio de Janeiro, 21040360, Brazil, 55 2138659623, thiago.torres@ini.fiocruz.br %K social media %K web-based recruitment strategies %K men who have sex with men %K pre-exposure prophylaxis %K PrEP %K HIV prevention %K Brazil %K Latin America %K HIV %D 2022 %7 4.8.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Internet and mobile phones, widely available in Brazil, could be used to disseminate information about HIV prevention and to recruit gay, bisexual, and other cisgender men who have sex with men (MSM) to HIV prevention services. Data evaluating the characteristics of MSM recruited through different web-based strategies and estimating their cost and yield in the country are not available. Objective: We aimed to describe a web-based recruitment cascade, compare the characteristics of MSM recruited to a large HIV prevention service in Rio de Janeiro according to web-based venues, and estimate the cost per participant for each strategy. Methods: We promoted advertisements on geosocial networking (GSN) apps (Hornet and Grindr) and social media (Facebook and Instagram) from March 2018 to October 2019. The advertisements invited viewers to contact a peer educator to schedule a visit at the HIV prevention service. Performance of web-based recruitment cascade was based on how many MSM (1) were reached by the advertisement, (2) contacted the peer educator, and (3) attended the service. We used chi-square tests to compare MSM recruited through GSN apps and social media. The estimated advertisement cost to recruit a participant was calculated by dividing total advertisement costs by number of participants who attended the service or initiated preexposure prophylaxis (PrEP). Results: Advertisement reached 1,477,344 individuals; 1270 MSM contacted the peer educator (86 contacts per 100,000 views)—564 (44.4%), 401 (31.6%) and 305 (24.0%)—through social media, Grindr, and Hornet. Among the 1270 individuals who contacted the peer educator, 36.3% (n=461) attended the service with similar proportion for each web-based strategy (social media: 203/564, 36.0%; Grindr: 152/401, 37.9%; and Hornet: 107/305, 35.1%). MSM recruited through GSN apps were older (mean age 30 years vs 26 years; P<.001), more frequently self-reported as White (111/247, 44.9% vs 62/191, 32.5%; P=.03), and had higher schooling level (postsecondary: 157/254, 61.8% vs 94/194, 48.5%; P=.007) than MSM recruited through social media. GSN apps recruited MSM with higher HIV risk as measured by PrEP eligibility (207/239, 86.6% vs 133/185, 71.9%; P<.001) compared with social media, but there was no difference in PrEP uptake between the two strategies (P=.22). The estimated advertisement costs per participant attending the HIV prevention service were US $28.36 for GSN apps and US $12.17 for social media. The estimated advertisement costs per participant engaging on PrEP were US $58.77 for GSN apps and US $27.75 for social media. Conclusions: Social media and GSN app advertisements were useful to disseminate information on HIV prevention strategies and to recruit MSM to a large HIV prevention service in Brazil. Compared to GSN apps, social media advertisements were less expensive and reached more vulnerable and younger MSM. Digital marketing campaigns should use different and complementary web-based venues to reach a plurality of MSM. %M 35925658 %R 10.2196/33309 %U https://formative.jmir.org/2022/8/e33309 %U https://doi.org/10.2196/33309 %U http://www.ncbi.nlm.nih.gov/pubmed/35925658 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 8 %N 7 %P e32286 %T Strategies to Identify and Reach Young Women Who Sell Sex With HIV Prevention and Care Services: Lessons Learnt From the Implementation of DREAMS Services in Two Cities in Zimbabwe %A Chabata,Sungai T %A Makandwa,Rumbidzo %A Hensen,Bernadette %A Mushati,Phillis %A Chiyaka,Tarisai %A Musemburi,Sithembile %A Busza,Joanna %A Floyd,Sian %A Birdthistle,Isolde %A Hargreaves,James R %A Cowan,Frances M %+ Centre for Sexual Health and HIV/AIDS Research (CeSHHAR), 4 Bath Road, Belgravia, Harare, Zimbabwe, 263 773577686, sungaichabata@gmail.com %K respondent-driven sampling %K peer outreach %K female sex worker %K young women who sell sex %K HIV prevention %K Zimbabwe %K sub-Saharan Africa %D 2022 %7 27.7.2022 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Young women who sell sex (YWSS), are underserved by available HIV prevention and care services. The Determined, Resilient, Empowered, AIDS-free, Mentored and Safe (DREAMS) Partnership aimed to reduce the risk of HIV acquisition among vulnerable populations of adolescent girls and young women, including YWSS, in 10 sub-Saharan African countries. We describe 2 methods, respondent-driven sampling (RDS) and peer outreach, used to refer YWSS for DREAMS services in Zimbabwe, and compare the characteristics and engagement of YWSS referred to these services by each method. We hypothesized that RDS would identify YWSS at higher risk of HIV and those who were less engaged with HIV prevention and care services than peer outreach. Objective: We aimed to compare respondent-driven sampling and peer outreach in recruiting and referring high-risk populations for HIV prevention and care services. Methods: We used RDS, a sampling method designed to reach a representative sample of the network of key populations, and peer outreach, a programmatic approach to identify, reach, and refer YWSS for DREAMS between April and July 2017, and January 2017 and July 2018, respectively, in 2 cities in Zimbabwe. For RDS, we conducted detailed mapping to understand sex work typology and geography, and then purposively selected 10 “seed” participants in each city to initiate RDS. For peer outreach, we initiated recruitment through 18 trained and age-matched peer educators using youth-tailored community mobilization. We described the characteristics and service engagement of YWSS who accessed DREAMS services by each referral approach and assessed the association of these characteristics with referral approach using the chi-square test. Analysis was performed with and without restricting the period when RDS took place. We estimated the relative incremental costs of recruiting YWSS using each strategy for referral to DREAMS services. Results: Overall, 5386 and 1204 YWSS were referred for DREAMS services through peer outreach and RDS, respectively. YWSS referred through RDS were more likely to access DREAMS services compared to YWSS referred through peer outreach (501/1204, 41.6% vs 930/5386, 17.3%; P<.001). Regardless of referral approach, YWSS who accessed DREAMS had similar education levels, and a similar proportion tested HIV negative and reported not using a condom at the last sex act. A higher proportion of YWSS accessing DREAMS through RDS were aged 18-19 years (167/501, 33.3% vs 243/930, 26.1%; P=.004) and more likely to be aware of their HIV status (395/501, 78.8% vs 396/930, 42.6%; P<.001) compared to those accessing DREAMS services through peer outreach. The incremental cost per young woman who sells sex recruited was US $7.46 for peer outreach and US $52.81 for RDS. Conclusions: Peer outreach and RDS approaches can reach and refer high-risk but different groups of YWSS for HIV services, and using both approaches will likely improve reach. International Registered Report Identifier (IRRID): RR2-10.1186/s12889-018-5085-6 %M 35896024 %R 10.2196/32286 %U https://publichealth.jmir.org/2022/7/e32286 %U https://doi.org/10.2196/32286 %U http://www.ncbi.nlm.nih.gov/pubmed/35896024 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 7 %P e35623 %T Identifying Family and Unpaid Caregivers in Electronic Health Records: Descriptive Analysis %A Ma,Jessica E %A Grubber,Janet %A Coffman,Cynthia J %A Wang,Virginia %A Hastings,S Nicole %A Allen,Kelli D %A Shepherd-Banigan,Megan %A Decosimo,Kasey %A Dadolf,Joshua %A Sullivan,Caitlin %A Sperber,Nina R %A Van Houtven,Courtney H %+ Geriatric Research, Education, and Clinical Center, Durham Veterans Affairs Health Care System, 508 Fulton St (152), Durham, NC, 27705, United States, 1 9192860411, jessica.ma@duke.edu %K veterans %K caregivers %K electronic health record %D 2022 %7 18.7.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Most efforts to identify caregivers for research use passive approaches such as self-nomination. We describe an approach in which electronic health records (EHRs) can help identify, recruit, and increase diverse representations of family and other unpaid caregivers. Objective: Few health systems have implemented systematic processes for identifying caregivers. This study aimed to develop and evaluate an EHR-driven process for identifying veterans likely to have unpaid caregivers in a caregiver survey study. We additionally examined whether there were EHR-derived veteran characteristics associated with veterans having unpaid caregivers. Methods: We selected EHR home- and community-based referrals suggestive of veterans’ need for supportive care from friends or family. We identified veterans with these referrals across the 8 US Department of Veteran Affairs medical centers enrolled in our study. Phone calls to a subset of these veterans confirmed whether they had a caregiver, specifically an unpaid caregiver. We calculated the screening contact rate for unpaid caregivers of veterans using attempted phone screening and for those who completed phone screening. The veteran characteristics from the EHR were compared across referral and screening groups using descriptive statistics, and logistic regression was used to compare the likelihood of having an unpaid caregiver among veterans who completed phone screening. Results: During the study period, our EHR-driven process identified 12,212 veterans with home- and community-based referrals; 2134 (17.47%) veteran households were called for phone screening. Among the 2134 veterans called, 1367 (64.06%) answered the call, and 813 (38.1%) veterans had a caregiver based on self-report of the veteran, their caregiver, or another person in the household. The unpaid caregiver identification rate was 38.1% and 59.5% among those with an attempted phone screening and completed phone screening, respectively. Veterans had increased odds of having an unpaid caregiver if they were married (adjusted odds ratio [OR] 2.69, 95% CI 1.68-4.34), had respite care (adjusted OR 2.17, 95% CI 1.41-3.41), or had adult day health care (adjusted OR 3.69, 95% CI 1.60-10.00). Veterans with a dementia diagnosis (adjusted OR 1.37, 95% CI 1.00-1.89) or veteran-directed care referral (adjusted OR 1.95, 95% CI 0.97-4.20) were also suggestive of an association with having an unpaid caregiver. Conclusions: The EHR-driven process to identify veterans likely to have unpaid caregivers is systematic and resource intensive. Approximately 60% (813/1367) of veterans who were successfully screened had unpaid caregivers. In the absence of discrete fields in the EHR, our EHR-driven process can be used to identify unpaid caregivers; however, incorporating caregiver identification fields into the EHR would support a more efficient and systematic identification of caregivers. Trial Registration: ClincalTrials.gov NCT03474380; https://clinicaltrials.gov/ct2/show/NCT03474380 %M 35849430 %R 10.2196/35623 %U https://formative.jmir.org/2022/7/e35623 %U https://doi.org/10.2196/35623 %U http://www.ncbi.nlm.nih.gov/pubmed/35849430 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 6 %P e34863 %T Effectiveness of Recruitment Strategies of Latino Smokers: Secondary Analysis of a Mobile Health Smoking Cessation Randomized Clinical Trial %A Arana-Chicas,Evelyn %A Cartujano-Barrera,Francisco %A Rieth,Katherine K %A Richter,Kimber K %A Ellerbeck,Edward F %A Cox,Lisa Sanderson %A Graves,Kristi D %A Diaz,Francisco J %A Catley,Delwyn %A Cupertino,Ana Paula %+ Department of Surgery, University of Rochester School of Medicine & Dentistry, 265 Crittenden Blvd, Rochester, NY, 14642, United States, 1 585 287 4217, Evelyn_Arana@urmc.rochester.edu %K smoking cessation %K Latino health, Latino recruitment %K health disparities %K participant recruitment %D 2022 %7 27.6.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Latinos remain disproportionately underrepresented in clinical trials, comprising only 2%-3% of research participants. In order to address health disparities, it is critically important to increase enrollment of Latino smokers in smoking cessation trials. There is limited research examining effective recruitment strategies for this population. Objective: The purpose of this study was to compare the effectiveness of direct versus mass and high- versus low-effort recruitment strategies on recruitment and retention of Latino smokers to a randomized smoking cessation trial. We also examine how the type of recruitment might have influenced the characteristics of enrolled participants. Methods: Latino smokers were enrolled into Decídetexto from 4 states—New Jersey, Kansas, Missouri, and New York. Participants were recruited from August 2018 until March 2021. Mass recruitment strategies included English and Spanish advertisements to the Latino community via flyers, Facebook ads, newspapers, television, radio, church bulletins, and our Decídetexto website. Direct, high-effort strategies included referrals from clinics or community-based organizations with whom we partnered, in-person community outreach, and patient registry calls. Direct, low-effort strategies included texting or emailing pre-existing lists of patients who smoked. A team of trained bilingual (English and Spanish) recruiters from 9 different Spanish-speaking countries of origin conducted recruitment, assessed eligibility, and enrolled participants into the trial. Results: Of 1112 individuals who were screened, 895 (80.5%) met eligibility criteria, and 457 (457/895, 51.1%) enrolled in the trial. Within the pool of screened individuals, those recruited by low-effort recruitment strategies (both mass and direct) were significantly more likely to be eligible (odds ratio [OR] 1.67, 95% CI 1.01-2.76 and OR 1.70, 95% CI 0.98-2.96, respectively) and enrolled in the trial (OR 2.60, 95% CI 1.81-3.73 and OR 3.02, 95% CI 2.03-4.51, respectively) compared with those enrolled by direct, high-effort strategies. Among participants enrolled, the retention rates at 3 months and 6 months among participants recruited via low-effort strategies (both mass and direct) were similar to participants recruited via direct, high-effort methods. Compared with enrolled participants recruited via direct (high- and low-effort) strategies, participants recruited via mass strategies were less likely to have health insurance (44.0% vs 71.2% and 71.7%, respectively; P<.001), lived fewer years in the United States (22.4 years vs 32.4 years and 30.3 years, respectively; P<.001), more likely to be 1st generation (92.7% vs 76.5% and 77.5%, respectively; P=.007), more likely to primarily speak Spanish (89.3% vs 65.8% and 66.3%, respectively), and more likely to be at high risk for alcohol abuse (5.8 mean score vs 3.8 mean score and 3.9 mean score, respectively; P<.001). Conclusions: Although most participants were recruited via direct, high-effort strategies, direct low-effort recruitment strategies yielded a screening pool more likely to be eligible for the trial. Mass recruitment strategies were associated with fewer acculturated enrollees with lower access to health services—groups who might benefit a great deal from the intervention. Trial Registration: ClinicalTrials.gov identifier: NCT03586596; https://clinicaltrials.gov/ct2/show/NCT03586596 International Registered Report Identifier (IRRID): RR2-10.1016/j.cct.2020.106188 %M 35759320 %R 10.2196/34863 %U https://www.jmir.org/2022/6/e34863 %U https://doi.org/10.2196/34863 %U http://www.ncbi.nlm.nih.gov/pubmed/35759320 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 6 %P e28059 %T Direct Outreach in Bars and Clubs to Enroll Cigarette Smokers in Mobile Cessation Services: Exploratory Study %A Chalela,Patricia %A McAlister,Alfred L %A Despres,Cliff %A Muñoz,Edgar %A Sukumaran,Pramod %A Akopian,David %A Kaghyan,Sahak %A Trujillo,Jesus %A Ramirez,Amelie G %+ Institute for Health Promotion Research, University of Texas Health Science Center at San Antonio, Suite 1000, 7411 John Smith Drive, San Antonio, TX, 78229, United States, 1 210 562 6500, ramirezag@uthscsa.edu %K smoking cessation %K young adults %K Latinos %K mobile intervention %K direct recruitment %D 2022 %7 2.6.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Cigarette smoking and alcohol use are well known to be concomitant behaviors, but there is a lack of studies related to recruitment of smokers for mobile cessation services at places where alcohol is consumed, such as bars and clubs. Adapting recruitment strategies to expand the reach of cessation programs to where tobacco users are located may help decrease the health-equity gap in tobacco control by improving reach and enrollment of underserved smokers residing in low-income and rural areas who are not reached by traditional cessation services. Objective: The purpose of this exploratory study was to assess the feasibility of direct outreach in bars, clubs, and restaurants to recruit smokers to Quitxt, our mobile smoking cessation service. Quitxt is delivered through SMS text messaging or Facebook Messenger. Methods: We collaborated with an advertising agency to conduct in-person recruitment of young adult smokers aged 18-29 years, focusing on urban and rural Spanish-speaking Latino participants, as well as English-speaking rural White and African American participants. Street team members were recruited and trained in a 4-hour session, including a brief introduction to the public health impacts of cigarette smoking and the aims of the project. The street teams made direct, face-to-face contact with smokers in and near smoking areas at 25 bars, clubs, and other venues frequented by young smokers in urban San Antonio and nearby rural areas. Results: The 3923 interactions by the street teams produced 335 (8.5%) program enrollments. Most participants were English speakers with a mean age of 29.2 (SD 10.6) years and smoked a mean of 8.5 (SD 6.2) cigarettes per day. Among users who responded to questions on gender and ethnicity, 66% (70/106) were women and 56% (60/107) were Hispanic/Latino. Among users ready to make a quit attempt, 22% (17/77) reported 1 tobacco-free day and 16% (10/62) reported maintaining cessation to achieve 1 week without smoking. The response rate to later follow-up questions was low. Conclusions: Direct outreach in bars and clubs is a useful method for connecting young adult cigarette smokers with mobile cessation services. However, further research is needed to learn more about how mobile services can influence long-term smoking cessation among those recruited through direct outreach, as well as to test the use of incentives in obtaining more useful response rates. %M 35653173 %R 10.2196/28059 %U https://formative.jmir.org/2022/6/e28059 %U https://doi.org/10.2196/28059 %U http://www.ncbi.nlm.nih.gov/pubmed/35653173 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 5 %P e35874 %T Potential of Online Recruitment Among 15-25-Year Olds: Feasibility Randomized Controlled Trial %A Hoffmann,Sofie Have %A Paldam Folker,Anna %A Buskbjerg,Mark %A Paldam Folker,Marie %A Huber Jezek,Andrea %A Lyngsø Svarta,Durita %A Nielsen Sølvhøj,Ida %A Thygesen,Lau %+ National Institute of Public Health, University of Southern Denmark, Studiestræde 6, Copenhagen, 1455, Denmark, 45 29138049, sohh@vive.dk %K recruitment %K web based %K online %K mental health %K young people %K well-being %D 2022 %7 25.5.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Recruiting young people for health and intervention studies by traditional methods has become increasingly challenging. The widespread access to the internet may offer new strategies for online recruitment. Objective: This study aims to assess the feasibility of online recruitment for a randomized controlled trial evaluating the effectiveness of Mindhelper, an online national youth mental health promotion service. The target group was young Danes aged 15-25 in need of mental health promotion. Methods: Advertisements for recruitment were set up on Facebook and Instagram. Browser history was collected for a subsample of participants. We compared basic characteristics of participants who completed the baseline survey and those who did not, as well as of participants who completed the follow-up survey and those who were lost to follow-up. The significance of these differences was tested with the Pearson chi-square test. Results: A total of 560 Danes aged 15-25 were recruited within 1 month (ie, had completed the baseline survey). Among these participants, 356 (63.6%) were at risk of developing depression or stress. The average advertisement price per participant completing the baseline questionnaire was 31 DKK (approximately €4 [US $4.2]). The follow-up survey was sent to 545 participants, of whom 318 (58.3%) completed the survey. No statistically significant differences were observed in baseline characteristics of participants who completed the follow-up and those who were lost to follow-up in terms of gender (P=.45), age (P=.35), occupation (P=.17), cohabitation (P=.90), mental well-being (P=.26), mental illness (P=.44; impact of the illness, P=.05), or use of the internet when having a hard time (P=.92). Conclusions: We conclude that it is feasible to recruit young Danes online for a large-scale randomized controlled trial assessing the effectiveness of Mindhelper. Trial Registration: ClinicalTrials.gov NCT04650906; https://clinicaltrials.gov/ct2/show/NCT04650906 %M 35612877 %R 10.2196/35874 %U https://formative.jmir.org/2022/5/e35874 %U https://doi.org/10.2196/35874 %U http://www.ncbi.nlm.nih.gov/pubmed/35612877 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 5 %P e36943 %T Promised and Lottery Airtime Incentives to Improve Interactive Voice Response Survey Participation Among Adults in Bangladesh and Uganda: Randomized Controlled Trial %A Gibson,Dustin Garrett %A Kibria,Gulam Muhammed Al %A Pariyo,George William %A Ahmed,Saifuddin %A Ali,Joseph %A Labrique,Alain Bernard %A Khan,Iqbal Ansary %A Rutebemberwa,Elizeus %A Flora,Meerjady Sabrina %A Hyder,Adnan Ali %+ Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe Street, E8650, Baltimore, MD, 21205, United States, 1 443 287 8763, dgibso28@jhu.edu %K mobile phone survey %K interactive voice response survey %K survey %K interactive voice response %K non-communicable disease %K surveillance %K airtime incentive %K response rate %K cooperation rate %K communicable disease %K Uganda %K Bangladesh %K low income %K middle income %K LMIC %K Africa %K incentive %K RCT %K randomized controlled trial %K lottery %K cooperation %K participation %D 2022 %7 9.5.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Increased mobile phone penetration allows the interviewing of respondents using interactive voice response surveys in low- and middle-income countries. However, there has been little investigation of the best type of incentive to obtain data from a representative sample in these countries. Objective: We assessed the effect of different airtime incentives options on cooperation and response rates of an interactive voice response survey in Bangladesh and Uganda. Methods: The open-label randomized controlled trial had three arms: (1) no incentive (control), (2) promised airtime incentive of 50 Bangladeshi Taka (US $0.60; 1 BDT is approximately equivalent to US $0.012) or 5000 Ugandan Shilling (US $1.35; 1 UGX is approximately equivalent to US $0.00028), and (3) lottery incentive (500 BDT and 100,000 UGX), in which the odds of winning were 1:20. Fully automated random-digit dialing was used to sample eligible participants aged ≥18 years. The risk ratios (RRs) with 95% confidence intervals for primary outcomes of response and cooperation rates were obtained using log-binomial regression. Results: Between June 14 and July 14, 2017, a total of 546,746 phone calls were made in Bangladesh, with 1165 complete interviews being conducted. Between March 26 and April 22, 2017, a total of 178,572 phone calls were made in Uganda, with 1248 complete interviews being conducted. Cooperation rates were significantly higher for the promised incentive (Bangladesh: 39.3%; RR 1.38, 95% CI 1.24-1.55, P<.001; Uganda: 59.9%; RR 1.47, 95% CI 1.33-1.62, P<.001) and the lottery incentive arms (Bangladesh: 36.6%; RR 1.28, 95% CI 1.15-1.45, P<.001; Uganda: 54.6%; RR 1.34, 95% CI 1.21-1.48, P<.001) than those for the control arm (Bangladesh: 28.4%; Uganda: 40.9%). Similarly, response rates were significantly higher for the promised incentive (Bangladesh: 26.5%%; RR 1.26, 95% CI 1.14-1.39, P<.001; Uganda: 41.2%; RR 1.27, 95% CI 1.16-1.39, P<.001) and lottery incentive arms (Bangladesh: 24.5%%; RR 1.17, 95% CI 1.06-1.29, P=.002; Uganda: 37.9%%; RR 1.17, 95% CI 1.06-1.29, P=.001) than those for the control arm (Bangladesh: 21.0%; Uganda: 32.4%). Conclusions: Promised or lottery airtime incentives improved survey participation and facilitated a large sample within a short period in 2 countries. Trial Registration: ClinicalTrials.gov NCT03773146; http://clinicaltrials.gov/ct2/show/NCT03773146 %M 35532997 %R 10.2196/36943 %U https://www.jmir.org/2022/5/e36943 %U https://doi.org/10.2196/36943 %U http://www.ncbi.nlm.nih.gov/pubmed/35532997 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 5 %P e31231 %T Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework %A Zimmermann,Bettina M %A Willem,Theresa %A Bredthauer,Carl Justus %A Buyx,Alena %+ Institute of History and Ethics in Medicine, School of Medicine, Technical University of Munich, Prinzregentenstraße 68, Munich, 81675, Germany, 49 17662315637, theresa.willem@tum.de %K social media %K clinical studies %K clinical trials %K ethics %K recruitment %D 2022 %7 3.5.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Social media recruitment for clinical studies holds the promise of being a cost-effective way of attracting traditionally marginalized populations and promoting patient engagement with researchers and a particular study. However, using social media for recruiting clinical study participants also poses a range of ethical issues. Objective: This study aims to provide a comprehensive overview of the ethical benefits and risks to be considered for social media recruitment in clinical studies and develop practical recommendations on how to implement these considerations. Methods: On the basis of established principles of clinical ethics and research ethics, we reviewed the conceptual and empirical literature for ethical benefits and challenges related to social media recruitment. From these, we derived a conceptual framework to evaluate the eligibility of social media use for recruitment for a specific clinical study. Results: We identified three eligibility criteria for social media recruitment for clinical studies: information and consent, risks for target groups, and recruitment effectiveness. These criteria can be used to evaluate the implementation of a social media recruitment strategy at its planning stage. We have discussed the practical implications of these criteria for researchers. Conclusions: The ethical challenges related to social media recruitment are context sensitive. Therefore, social media recruitment should be planned rigorously, taking into account the target group, the appropriateness of social media as a recruitment channel, and the resources available to execute the strategy. %M 35503247 %R 10.2196/31231 %U https://www.jmir.org/2022/5/e31231 %U https://doi.org/10.2196/31231 %U http://www.ncbi.nlm.nih.gov/pubmed/35503247 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 8 %N 2 %P e33240 %T Barriers to Clinical Trial Participation: Comparative Study Between Rural and Urban Participants %A Mudaranthakam,Dinesh Pal %A Gajewski,Byron %A Krebill,Hope %A Coulter,James %A Springer,Michelle %A Calhoun,Elizabeth %A Hughes,Dorothy %A Mayo,Matthew %A Doolittle,Gary %+ University of Kansas Medical Center, 3901 Rainbow Blvd, Kansas City, KS, 66085, United States, 1 9139456922, dmudaranthakam@kumc.edu %K rural residents %K clinical trials %K screening %K cancer %K patients %K lung cancer %K health policy epidemiology %K cancer patients %K electronic screening logs %K electronic screening %D 2022 %7 21.4.2022 %9 Original Paper %J JMIR Cancer %G English %X Background: The National Clinical Trials Network program conducts phase 2 or phase 3 treatment trials across all National Cancer Institute’s designated cancer centers. Participant accrual across these clinical trials is a critical factor in deciding their success. Cancer centers that cater to rural populations, such as The University of Kansas Cancer Center, have an additional responsibility to ensure rural residents have access and are well represented across these studies. Objective: There are scant data available regarding the factors that act as barriers to the accrual of rural residents in these clinical trials. This study aims to use electronic screening logs that were used to gather patient data at several participating sites in The Kansas University of Cancer Center’s Catchment area. Methods: Screening log data were used to assess what clinical trial participation barriers are faced by these patients. Additionally, the differences in clinical trial participation barriers were compared between rural and urban participating sites. Results: Analysis revealed that the hospital location rural urban category, defined as whether the hospital was in an urban or rural setting, had a medium effect on enrolment of patients in breast cancer and lung cancer trials (Cohen d=0.7). Additionally, the hospital location category had a medium effect on the proportion of recurrent lung cancer cases at the time of screening (d=0.6). Conclusions: In consideration of the financially hostile nature of cancer treatment as well as geographical and transportation barriers, clinical trials extended to rural communities are uniquely positioned to alleviate the burden of nonmedical costs in trial participation. However, these options can be far less feasible for patients in rural settings. Since the number of patients with cancer who are eligible for a clinical trial is already limited by the stringent eligibility criteria required of such a complex disease, improving accessibility for rural patients should be a greater focus in health policy. %M 35451964 %R 10.2196/33240 %U https://cancer.jmir.org/2022/2/e33240 %U https://doi.org/10.2196/33240 %U http://www.ncbi.nlm.nih.gov/pubmed/35451964 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 10 %N 4 %P e28696 %T Patient Recruitment System for Clinical Trials: Mixed Methods Study About Requirements at Ten University Hospitals %A Fitzer,Kai %A Haeuslschmid,Renate %A Blasini,Romina %A Altun,Fatma Betül %A Hampf,Christopher %A Freiesleben,Sherry %A Macho,Philipp %A Prokosch,Hans-Ulrich %A Gulden,Christian %+ Core Unit Data Integration Center, University Medicine Greifswald, Walter-Rathenau-Str 48, Greifswald, 17487, Germany, 49 383486 ext 7555, kai.fitzer@uni-greifswald.de %K patient recruitment system %K clinical trial recruitment support system %K recruitment %K patient screening %K requirements %K user needs %K clinical trial %K interview %K survey %K electronic support %K clinical information systems %K eHealth %D 2022 %7 20.4.2022 %9 Original Paper %J JMIR Med Inform %G English %X Background: Clinical trials are the gold standard for advancing medical knowledge and improving patient outcomes. For their success, an appropriately sized cohort is required. However, patient recruitment remains one of the most challenging aspects of clinical trials. Information technology (IT) support systems—for instance, patient recruitment systems—may help overcome existing challenges and improve recruitment rates, when customized to the user needs and environment. Objective: The goal of our study is to describe the status quo of patient recruitment processes and to identify user requirements for the development of a patient recruitment system. Methods: We conducted a web-based survey with 56 participants as well as semistructured interviews with 33 participants from 10 German university hospitals. Results: We here report the recruitment procedures and challenges of 10 university hospitals. The recruitment process was influenced by diverse factors such as the ward, use of software, and the study inclusion criteria. Overall, clinical staff seemed more involved in patient identification, while the research staff focused on screening tasks. Ad hoc and planned screenings were common. Identifying eligible patients was still associated with significant manual efforts. The recruitment staff used Microsoft Office suite because tailored software were not available. To implement such software, data from disparate sources will need to be made available. We discussed concrete technical challenges concerning patient recruitment systems, including requirements for features, data, infrastructure, and workflow integration, and we contributed to the support of developing a successful system. Conclusions: Identifying eligible patients is still associated with significant manual efforts. To fully make use of the high potential of IT in patient recruitment, many technical and process challenges have to be solved first. We contribute and discuss concrete technical challenges for patient recruitment systems, including requirements for features, data, infrastructure, and workflow integration. %M 35442203 %R 10.2196/28696 %U https://medinform.jmir.org/2022/4/e28696 %U https://doi.org/10.2196/28696 %U http://www.ncbi.nlm.nih.gov/pubmed/35442203 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 5 %N 2 %P e35320 %T Lessons Learned Recruiting and Retaining Pregnant and Postpartum Individuals in Digital Trials: Viewpoint %A Parks,Amanda M %A Duffecy,Jennifer %A McCabe,Jennifer E %A Blankstein Breman,Rachel %A Milgrom,Jeannette %A Hirshler,Yafit %A Gemmill,Alan W %A Segre,Lisa S %A Felder,Jennifer N %A Uscher-Pines,Lori %+ Department of Psychology, Virginia Commonwealth University, 806 West Franklin Street, Box 842018, Richmond, VA, 23284-2018, United States, 1 301 395 7925, parksam2@vcu.edu %K digital trials %K maternal and child health %K pregnant and postpartum individuals %K fraudulent enrollment %K retention and recruitment %K pediatrics %K parenting %K pregnant women %K COVID-19 %K pandemic %K postpartum %K digital health %D 2022 %7 20.4.2022 %9 Viewpoint %J JMIR Pediatr Parent %G English %X In an increasingly connected world and in the midst of a global pandemic, digital trials offer numerous advantages over traditional trials that rely on physical study sites. Digital trials have the potential to improve access to research and clinical treatments for the most vulnerable and minoritized, including pregnant and postpartum individuals. However, digital trials are underutilized in maternal and child health research, and there is limited evidence to inform the design and conduct of digital trials. Our research collaborative, consisting of 5 research teams in the U.S. and Australia, aimed to address this gap. We collaborated to share lessons learned from our experiences recruiting and retaining pregnant and postpartum individuals in digital trials of social and behavioral interventions. We first discuss the promise of digital trials in improving participation in research during the perinatal period, as well as the unique challenges they pose. Second, we present lessons learned from 12 completed and ongoing digital trials that have used platforms such as Ovia, Facebook, and Instagram for recruitment. Our trials evaluated interventions for breastfeeding, prenatal and postpartum depression, insomnia, decision making, and chronic pain. We focus on challenges and lessons learned in 3 key areas: (1) rapid recruitment of large samples with a diversity of minoritized identities, (2) retention of study participants in longitudinal studies, and (3) prevention of fraudulent enrollment. We offer concrete strategies that we pilot-tested to address these challenges. Strategies presented in this commentary can be incorporated, as well as formally evaluated, in future studies. %M 35107422 %R 10.2196/35320 %U https://pediatrics.jmir.org/2022/2/e35320 %U https://doi.org/10.2196/35320 %U http://www.ncbi.nlm.nih.gov/pubmed/35107422 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 4 %P e31901 %T Recruiting Black Men Who Have Sex With Men (MSM) Couples via Dating Apps: Pilot Study on Challenges and Successes %A Witkovic,Yong Darin %A Kim,Hyunjin Cindy %A Bright,Darius Jovon %A Tan,Judy Y %+ Division of Prevention Science, Center for AIDS Prevention Studies, University of California San Francisco, 550 16th Street, 3rd Floor, San Francisco, CA, 94158, United States, 1 415 514 7419, judy.tan@ucsf.edu %K African American %K sexual and gender minorities %K homosexuality, male %K HIV %K mHealth intervention %K mobile applications %K apps %K sexual partners %K investigative techniques %K community engagement %K MSM %K Black men %K mobile app %K LGBT %K research methods %K recruitment %K online dating %K social network %D 2022 %7 8.4.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: HIV disproportionately impacts Black men who have sex with men (MSM), and targeting the primary relationship (ie, couples) using mobile technology for health holds promise for HIV prevention. Web-based recruitment of MSM is commonly employed in HIV prevention and intervention research. However, little known about recruiting Black MSM couples on the internet in the United States. Objective: This study describes the process of recruiting Black MSM couples over social networking and dating apps frequented by MSM. We describe the activities for recruiting, screening, and enrolling participants as part of a randomized trial employing a multipronged recruitment approach. Methods: Black MSM in couples were recruited via three apps (ie, Jack’d, Adam4Adam, and Growlr) between May 2020 and March 2021 during the COVID-19 pandemic in the United States. Black MSM couples were eligible if one or both partners are Black, MSM, and living with HIV, and if both partners were 18 years or older, and have been together for at least 2 months in what they both consider a primary relationship (ie, one in which both partners reported feeling most committed to over any other partner or relationship). Results: A total of 10 Black MSM couples (n=20) were enrolled via social networking apps. App recruitment activities were a combination of passive (eg, in-app advertisements) and active (eg, direct messaging of users) engagement. Recruitment approaches varied by the social networking app owing to differences in app features. A full-time recruiter experienced challenges such as bugs (ie, technical errors in computer program or system), navigating technical requirements specific to each app, and web-based harassment. Conclusions: Despite challenges, it was possible to recruit Black MSM couples virtually into research as part of a multipronged recruitment strategy. We identify tips for using web-based dating and other social networking apps as part of a recruitment strategy in future research with Black MSM couples. %M 35394432 %R 10.2196/31901 %U https://formative.jmir.org/2022/4/e31901 %U https://doi.org/10.2196/31901 %U http://www.ncbi.nlm.nih.gov/pubmed/35394432 %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 %@ 2561-6722 %I JMIR Publications %V 5 %N 1 %P e30941 %T Using a Patient Portal to Increase Enrollment in a Newborn Screening Research Study: Observational Study %A Gehtland,Lisa M %A Paquin,Ryan S %A Andrews,Sara M %A Lee,Adam M %A Gwaltney,Angela %A Duparc,Martin %A Pfaff,Emily R %A Bailey Jr,Donald B %+ RTI International, 3040 E. Cornwallis Road, Research Triangle Park, NC, 27709, United States, 1 919 541 8054, lgehtland@rti.org %K electronic health records %K patient portals %K patient selection %K research subject recruitment %K race factors %K racial disparities %D 2022 %7 10.2.2022 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Many research studies fail to enroll enough research participants. Patient-facing electronic health record applications, known as patient portals, may be used to send research invitations to eligible patients. Objective: The first aim was to determine if receipt of a patient portal research recruitment invitation was associated with enrollment in a large ongoing study of newborns (Early Check). The second aim was to determine if there were differences in opening the patient portal research recruitment invitation and study enrollment by race and ethnicity, age, or rural/urban home address. Methods: We used a computable phenotype and queried the health care system’s clinical data warehouse to identify women whose newborns would likely be eligible. Research recruitment invitations were sent through the women’s patient portals. We conducted logistic regressions to test whether women enrolled their newborns after receipt of a patient portal invitation and whether there were differences by race and ethnicity, age, and rural/urban home address. Results: Research recruitment invitations were sent to 4510 women not yet enrolled through their patient portals between November 22, 2019, through March 5, 2020. Among women who received a patient portal invitation, 3.6% (161/4510) enrolled their newborns within 27 days. The odds of enrolling among women who opened the invitation was nearly 9 times the odds of enrolling among women who did not open their invitation (SE 3.24, OR 8.86, 95% CI 4.33-18.13; P<.001). On average, it took 3.92 days for women to enroll their newborn in the study, with 64% (97/161) enrolling their newborn within 1 day of opening the invitation. There were disparities by race and urbanicity in enrollment in the study after receipt of a patient portal research invitation but not by age. Black women were less likely to enroll their newborns than White women (SE 0.09, OR 0.29, 95% CI 0.16-0.55; P<.001), and women in urban zip codes were more likely to enroll their newborns than women in rural zip codes (SE 0.97, OR 3.03, 95% CI 1.62-5.67; P=.001). Black women (SE 0.05, OR 0.67, 95% CI 0.57-0.78; P<.001) and Hispanic women (SE 0.07, OR 0.73, 95% CI 0.60-0.89; P=.002) were less likely to open the research invitation compared to White women. Conclusions: Patient portals are an effective way to recruit participants for research studies, but there are substantial racial and ethnic disparities and disparities by urban/rural status in the use of patient portals, the opening of a patient portal invitation, and enrollment in the study. Trial Registration: ClinicalTrials.gov NCT03655223; https://clinicaltrials.gov/ct2/show/NCT03655223 %M 35142618 %R 10.2196/30941 %U https://pediatrics.jmir.org/2022/1/e30941 %U https://doi.org/10.2196/30941 %U http://www.ncbi.nlm.nih.gov/pubmed/35142618 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 9 %N 1 %P e28798 %T Identifying Ethical and Culturally Responsive Research Activities to Build Trust and Improve Participation of Black Sexual Minority Men in Pre-Exposure Prophylaxis Telehealth Clinical Trials: Qualitative Study %A Dangerfield II,Derek T %A Wylie,Charleen %+ Johns Hopkins School of Nursing, 525 N Wolfe St, Baltimore, MD, 21205, United States, 1 4439839283, ddanger2@jhu.edu %K HIV %K sexual health %K stigma %K medical mistrust %K PrEP %K telehealth %K medication adherence %K minorities %K focus groups %K sexual minorities %K mobile phone %D 2022 %7 7.2.2022 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Telehealth interventions could improve pre-exposure prophylaxis (PrEP) initiation and adherence in high HIV incidence groups such as young Black sexual minority men (BSMM). However, young BSMM remain distrustful of and underrepresented in clinical trials. Therefore, ethical and culturally responsive ways are needed to build trust and improve their participation in PrEP telehealth clinical trials. Objective: To bridge this gap, this study identified ethical and culturally responsive activities to build trust and improve participation of young BSMM in PrEP telehealth clinical trials. Methods: We obtained data from 7 virtual, synchronous focus groups that were conducted from April to August 2020 and consisted of 28 BSMM aged 18-34 years. Focus groups included a brief survey distributed online via Qualtrics followed by a virtual, synchronous focus group conducted via Zoom that lasted between 50 and 75 minutes. Focus groups were stratified by age (18- to 24-year-old participants and 25- to 34-year-old participants), outlined the components of an example PrEP telehealth randomized controlled trial, and included questions on domains of the study design—research motivations, study funding, recruitment activities, informed consent details, randomization, follow-up, and end of study activities. Participants were asked targeted questions regarding the ethics and trustworthiness of the study and ways in which researchers could gain their trust through the protocol used in the PrEP telehealth clinical trial. Results: The focus groups included 2 groups of 18- to 24-year-old participants and 5 groups of 25- to 34-year-old participants. The mean age of participants was 27.2 years (SD 4.4 years). Of the 28 participants, 10 (36%) reported a bachelor’s degree to be their highest completed education level and 6 (21%) reported some graduate degree or higher to be their highest completed education level. Most participants (16/28, 57%) reported that they worked full-time and that they were single or not in a committed relationship (21/28, 75%). Most participants (24/28, 86%) reported that they used at least one drug before sex in the 6 months prior to the study. All participants reported that they heard about PrEP and 36% (10/28) were current PrEP users. Overall, the focus groups yielded themes related to the impact of researcher intentions, study funding, recruitment activities, informed consent details, randomization, and study team interactions during and after the study on trust and participation in the clinical trial. Conclusions: Medical and research mistrust persists among BSMM. This study identified several ethical and culturally responsive activities to build trust and improve participation of young BSMM in PrEP telehealth clinical trials. Future studies should assess the relative impact of implementing these findings on research participation in a PrEP telehealth clinical trial. %M 35129448 %R 10.2196/28798 %U https://humanfactors.jmir.org/2022/1/e28798 %U https://doi.org/10.2196/28798 %U http://www.ncbi.nlm.nih.gov/pubmed/35129448 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 2 %P e29073 %T Peer Support Specialists’ Perspectives of a Standard Online Research Ethics Training: Qualitative Study %A Fortuna,Karen L %A Marceau,Skyla R %A Kadakia,Arya %A Pratt,Sarah I %A Varney,Joy %A Walker,Robert %A Myers,Amanda L %A Thompson,Shavon %A Carter,Katina %A Greene,Kaycie %A Pringle,Willie %+ Department of Psychiatry, Geisel School of Medicine, Dartmouth College, 46 Centerra Pkwy, Lebanon, NH, 03766, United States, 1 6037225727, karen.l.fortuna@dartmouth.edu %K peer support specialists %K community engagement %K research ethics %K mental health %K peer support %K codebook %K online health %K online training %K education %K ethics %D 2022 %7 1.2.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Certified peer support specialists (CPS) have a mental health condition and are trained and certified by their respective state to offer Medicaid reimbursable peer support services. CPS are increasingly involved as partners in research studies. However, most research ethics training in the protection of human subjects is designed for people who, unlike CPS, have had exposure to prior formal research training. Objective: The aim of this study is to explore the perspectives of CPS in completing the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. Methods: A total of 5 CPS were recruited using a convenience sample framework through the parent study, a patient-centered outcomes research study that examined the comparative effectiveness of two chronic health disease management programs for people with serious mental illness. Participants independently completed the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. All participants completed 15 online modules in approximately 7-9 hours and also filled out a self-report measure of executive functioning (the Adult Executive Functioning Inventory [ADEXI]). Qualitative data were collected from a 1-hour focus group and qualitative analysis was informed by the grounded theory approach. The codebook consisted of codes inductively derived from the data. Codes were independently assigned to text, grouped, and checked for themes. Thematic analysis was used to organize themes. Results: Passing scores for each module ranged from 81%-89%, with an average of 85.4% and a median of 86%. The two themes that emerged from the focus group were the following: comprehension (barrier) and opportunity (facilitator). Participants had a mean score of 27.4 on the ADEXI. Conclusions: The CPS perceived the research ethics online training as an opportunity to share their lived experience expertise to enhance current research efforts by nonpeer scientists. Although the CPS completed the online research ethics training, the findings indicate CPS experienced difficulty with comprehension of the research ethics online training materials. Adaptations may be needed to facilitate uptake of research ethics online training by CPS and create a workforce of CPS to offer their lived experience expertise alongside peer and nonpeer researchers. %M 35103606 %R 10.2196/29073 %U https://formative.jmir.org/2022/2/e29073 %U https://doi.org/10.2196/29073 %U http://www.ncbi.nlm.nih.gov/pubmed/35103606 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 1 %P e31759 %T Using Facebook Advertisements for Women’s Health Research: Methodology and Outcomes of an Observational Study %A Farr,Deeonna E %A Battle,Darian A %A Hall,Marla B %+ Department of Health Education and Promotion, College of Health and Human Performance, East Carolina University, 2307 Carol G Belk Building, Mail Stop 529, Greenville, NC, 27858, United States, 1 2527375392, farrd17@ecu.edu %K social media %K surveys %K questionnaires %K advertising %K patient selection %K methodology %K ethnic groups %K health research %K healthcare %K health care %K women’s health %D 2022 %7 12.1.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Recruitment of diverse populations for health research studies remains a challenge. The COVID-19 pandemic has exacerbated these challenges by limiting in-person recruitment efforts and placing additional demands on potential participants. Social media, through the use of Facebook advertisements, has the potential to address recruitment challenges. However, existing reports are inconsistent with regard to the success of this strategy. Additionally, limited information is available about processes that can be used to increase the diversity of study participants. Objective: A Qualtrics survey was fielded to ascertain women’s knowledge of and health care experiences related to breast density. This paper describes the process of using Facebook advertisements for recruitment and the effectiveness of various advertisement strategies. Methods: Facebook advertisements were placed in 2 rounds between June and July 2020. During round 1, multiple combinations of headlines and interest terms were tested to determine the most cost-effective advertisement. The best performing advertisement was used in round 2 in combination with various strategies to enhance the diversity of the survey sample. Advertisement performance, cost, and survey respondent data were collected and examined. Results: In round 1, a total of 45 advertisements with 5 different headlines were placed, and the average cost per link click for each headline ranged from US $0.12 to US $0.79. Of the 164 women recruited in round 1, in total 91.62% were eligible to complete the survey. Advertisements used during recruitment in round 2 resulted in an average cost per link click of US $0.11. During the second round, 478 women attempted the survey, and 87.44% were eligible to participate. The majority of survey respondents were White (80.41%), over the age of 55 years (63.94%), and highly educated (63.71%). Conclusions: Facebook advertisements can be used to recruit respondents for health research quickly, but this strategy may yield participants who are less racially diverse, more educated, and older than the general population. Researchers should consider recruiting participants through other methods in addition to creating Facebook advertisements targeting underrepresented populations. %M 35019843 %R 10.2196/31759 %U https://formative.jmir.org/2022/1/e31759 %U https://doi.org/10.2196/31759 %U http://www.ncbi.nlm.nih.gov/pubmed/35019843 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 24 %N 1 %P e26299 %T Unit Response and Costs in Web Versus Face-To-Face Data Collection: Comparison of Two Cross-sectional Health Surveys %A Braekman,Elise %A Demarest,Stefaan %A Charafeddine,Rana %A Drieskens,Sabine %A Berete,Finaba %A Gisle,Lydia %A Van der Heyden,Johan %A Van Hal,Guido %+ Lifestyle and chronic diseases, Epidemiology and public health, Sciensano, Juliette Wytsmanstraat 14, Brussels, Belgium, 32 2 642 57 06, elise.braekman@sciensano.be %K health interview surveys %K data collection mode %K face-to-face %K web %K unit response %K response rate %K nonresponse %K data collection costs %K web data %K health surveys %K internet penetration %K web survey %K costs %D 2022 %7 7.1.2022 %9 Original Paper %J J Med Internet Res %G English %X Background: Potential is seen in web data collection for population health surveys due to its combined cost-effectiveness, implementation ease, and increased internet penetration. Nonetheless, web modes may lead to lower and more selective unit response than traditional modes, and this may increase bias in the measured indicators. Objective: This research assesses the unit response and costs of a web study versus face-to-face (F2F) study. Methods: Alongside the Belgian Health Interview Survey by F2F edition 2018 (BHISF2F; net sample used: 3316), a web survey (Belgian Health Interview Survey by Web [BHISWEB]; net sample used: 1010) was organized. Sociodemographic data on invited individuals was obtained from the national register and census linkages. Unit response rates considering the different sampling probabilities of both surveys were calculated. Logistic regression analyses examined the association between mode system and sociodemographic characteristics for unit nonresponse. The costs per completed web questionnaire were compared with the costs for a completed F2F questionnaire. Results: The unit response rate is lower in BHISWEB (18.0%) versus BHISF2F (43.1%). A lower response rate was observed for the web survey among all sociodemographic groups, but the difference was higher among people aged 65 years and older (15.4% vs 45.1%), lower educated people (10.9% vs 38.0%), people with a non-Belgian European nationality (11.4% vs 40.7%), people with a non-European nationality (7.2% vs 38.0%), people living alone (12.6% vs 40.5%), and people living in the Brussels-Capital (12.2% vs 41.8%) region. The sociodemographic characteristics associated with nonresponse are not the same in the 2 studies. Having another European (OR 1.60, 95% CI 1.20-2.13) or non-European nationality (OR 2.57, 95% CI 1.79-3.70) compared to a Belgian nationality and living in the Brussels-Capital (OR 1.72, 95% CI 1.41-2.10) or Walloon (OR 1.47, 95% CI 1.15-1.87) regions compared to the Flemish region are associated with a higher nonresponse only in the BHISWEB study. In BHISF2F, younger people (OR 1.31, 95% CI 1.11-1.54) are more likely to be nonrespondents than older people, and this was not the case in BHISWEB. In both studies, lower educated people have a higher probability of being nonrespondent, but this effect is more pronounced in BHISWEB (low vs high education level: Web, OR 2.71, 95% CI 2.21-3.39 and F2F OR 1.70, 95% CI 1.48-1.95). The BHISWEB study had a considerable advantage; the cost per completed questionnaire was almost 3 times lower (€41 [US $48]) compared with F2F data collection (€111 [US $131]). Conclusions: The F2F unit response rate was generally higher, yet for certain groups the difference between web and F2F was more limited. Web data collection has a considerable cost advantage. It is therefore worth experimenting with adaptive mixed-mode designs to optimize financial resources without increasing selection bias (eg, only inviting sociodemographic groups who are keener to participate online for web surveys while continuing to focus on increasing F2F response rates for other groups). %M 34994701 %R 10.2196/26299 %U https://www.jmir.org/2022/1/e26299 %U https://doi.org/10.2196/26299 %U http://www.ncbi.nlm.nih.gov/pubmed/34994701 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 6 %N 1 %P e30027 %T Feasibility of Monitoring Health and Well-being in Emerging Adults: Pilot Longitudinal Cohort Study %A Lystad,Reidar P %A Fajardo Pulido,Diana %A Peters,Lorna %A Johnstone,Melissa %A Ellis,Louise A %A Braithwaite,Jeffrey %A Wuthrich,Viviana %A Amin,Janaki %A Cameron,Cate M %A Mitchell,Rebecca J %+ Australian Institute of Health Innovation, Macquarie University, 75 Talavera Road, Sydney, 2109, Australia, 61 298502464, reidar.lystad@mq.edu.au %K young adult %K emerging adulthood %K health %K well-being %K health-related quality of life %K feasibility %K monitoring %K pilot study %K longitudinal %K cohort %K youth %K acceptability %K survey %K quality of life %D 2022 %7 6.1.2022 %9 Original Paper %J JMIR Form Res %G English %X Background: Emerging adulthood is a distinct segment of an individual’s life course. The defining features of this transitional period include identity exploration, instability, future possibilities, self-focus, and feeling in-between, all of which are thought to affect quality of life, health, and well-being. A longitudinal cohort study with a comprehensive set of measures would be a valuable resource for improving the understanding of the multifaceted elements and unique challenges that contribute to the health and well-being of emerging adults. Objective: The main aim of this pilot study was to evaluate the feasibility and acceptability of recruiting university graduates to establish a longitudinal cohort study to inform the understanding of emerging adulthood. Methods: This pilot study was conducted among graduates at a large university. It involved collecting web-based survey data at baseline (ie, graduation) and 12 months post baseline, and linking survey responses to health records from administrative data collections. The feasibility outcome measures of interest included the recruitment rate, response rate, retention rate, data linkage opt-out rate, and availability of linked health records. Descriptive statistics were used to evaluate the representativeness of the sample, completeness of the survey responses, and data linkage characteristics. Results: Only 2.8% of invited graduates (238/8532) agreed to participate in this pilot cohort study, of whom 59.7% (142/238) responded to the baseline survey. The retention rate between the baseline and follow-up surveys was 69.7% (99/142). The completeness of the surveys was excellent, with the proportion of answered questions in each survey domain ranging from 87.3% to 100% in both the baseline and follow-up surveys. The data linkage opt-out rate was 32.4% (77/238). Conclusions: The overall recruitment rate was poor, while the completeness of survey responses among respondents ranged from good to excellent. There was reasonable acceptability for conducting data linkage of health records from administrative data collections and survey responses. This pilot study offers insights and recommendations for future research aiming to establish a longitudinal cohort study to investigate health and well-being in emerging adults. Trial Registration: Australian New Zealand Clinical Trials Registry number ACTRN12618001364268; https://tinyurl.com/teec8wh International Registered Report Identifier (IRRID): RR2-10.2196/16108 %M 34989696 %R 10.2196/30027 %U https://formative.jmir.org/2022/1/e30027 %U https://doi.org/10.2196/30027 %U http://www.ncbi.nlm.nih.gov/pubmed/34989696 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e25414 %T Lessons Learned: Beta-Testing the Digital Health Checklist for Researchers Prompts a Call to Action by Behavioral Scientists %A Bartlett Ellis,Rebecca %A Wright,Julie %A Miller,Lisa Soederberg %A Jake-Schoffman,Danielle %A Hekler,Eric B %A Goldstein,Carly M %A Arigo,Danielle %A Nebeker,Camille %+ Herbert Wertheim School of Public Health and Longevity Science, University of California San Diego, 9500 Gilman Drive, La Jolla, CA, 92093-0811, United States, 1 858 534 7786, nebeker@eng.ucsd.edu %K digital health %K mHealth %K research ethics %K institutional review board %K IRB %K behavioral medicine %K wearable sensors %K social media %K bioethics %K data management %K usability %K privacy %K access %K risks and benefits %K mobile phone %D 2021 %7 22.12.2021 %9 Viewpoint %J J Med Internet Res %G English %X Digital technologies offer unique opportunities for health research. For example, Twitter posts can support public health surveillance to identify outbreaks (eg, influenza and COVID-19), and a wearable fitness tracker can provide real-time data collection to assess the effectiveness of a behavior change intervention. With these opportunities, it is necessary to consider the potential risks and benefits to research participants when using digital tools or strategies. Researchers need to be involved in the risk assessment process, as many tools in the marketplace (eg, wellness apps, fitness sensors) are underregulated. However, there is little guidance to assist researchers and institutional review boards in their evaluation of digital tools for research purposes. To address this gap, the Digital Health Checklist for Researchers (DHC-R) was developed as a decision support tool. A participatory research approach involving a group of behavioral scientists was used to inform DHC-R development. Scientists beta-tested the checklist by retrospectively evaluating the technologies they had chosen for use in their research. This paper describes the lessons learned because of their involvement in the beta-testing process and concludes with recommendations for how the DHC-R could be useful for a variety of digital health stakeholders. Recommendations focus on future research and policy development to support research ethics, including the development of best practices to advance safe and responsible digital health research. %M 34941548 %R 10.2196/25414 %U https://www.jmir.org/2021/12/e25414 %U https://doi.org/10.2196/25414 %U http://www.ncbi.nlm.nih.gov/pubmed/34941548 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e31545 %T The Use of Multimode Data Collection in Random Digit Dialing Cell Phone Surveys for Young Adults: Feasibility Study %A Gundersen,Daniel Alexander %A Wivagg,Jonathan %A Young,William J %A Yan,Ting %A Delnevo,Cristine D %+ Survey and Qualitative Methods Core, Division of Population Sciences, Dana-Farber Cancer Institute, 450 Brookline Avenue, LW 686, Boston, MA, 02215, United States, 1 6176325827, DanielA_Gundersen@dfci.harvard.edu %K web mode %K web survey %K random digit dialing %K mixed mode surveys %K survey methodology %K data capture %K research methods %K recruitment %K survey %K feasibility %K smoking %D 2021 %7 20.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Young adults’ early adoption of new cell phone technologies have created challenges to survey recruitment but offer opportunities to combine random digit dialing (RDD) sampling with web mode data collection. The National Young Adult Health Survey was designed to test the feasibility of this methodology. Objective: In this study, we compared response rates across the telephone mode and web mode, assessed sample representativeness, examined design effects (DEFFs), and compared cigarette smoking prevalence to a gold standard national survey. Methods: We conducted a survey experiment where the sampling frame was randomized to single-mode telephone interviews, telephone-to-web sequential mixed mode, and single-mode web survey. A total of 831 respondents aged 18 to 34 years were recruited via RDD at baseline. A soft launch was conducted prior to main launch. We compared the web mode to the telephone modes (ie, single-mode and mixed mode) at wave 1 based on the American Association for Public Opinion Research response rate 3 for screening and extended surveys. Base-weighted demographic distributions were compared to the American Community Survey. The sample was calibrated to the US Census Bureau's American Community Survey to calculate DEFFs and to compare cigarette smoking prevalence to the National Health Interview Survey. Prevalence estimates are estimated with sampling weights and are presented with unweighted sample sizes. Consistency of estimates was judged by 95% CI. Results: The American Association for Public Opinion Research response rate 3 was higher in the telephone mode than in the web mode (24% and 30% vs 6.1% and 12.5%, for soft launch and main launch, respectively), which was reflected in response rate 3 for screening and extended surveys. During the soft launch, the extended survey and eligibility rate were low for respondents pushed to the web mode. To boost productivity and survey completes for the web condition, the main launch used cell phone numbers from the sampling frame where the sample vendor matched the number to auxiliary data, which suggested that the number likely belonged to an adult in the target age range. This increased the eligibility rate, but the screener response rate was lower. Compared to population distribution from the US Census Bureau, the telephone mode overrepresented men (57.1% [unweighted n=412] vs 50.9%) and those enrolled in college (40.3% [unweighted n=269] vs 23.8%); it also underrepresented those with a Bachelor of Arts or Science (34.4% [unweighted n=239] vs 55%). The web mode overrepresented White, non-Latinos (70.7% [unweighted n=90] vs 54.4%) and those with some college education (30.4% [unweighted n=40] vs 7.6%); it also underrepresented Latinos (13.6% [unweighted n=20] vs 20.7%) and those with a high school or General Education Development diploma (15.3% [unweighted n=20] vs 29.3%). The DEFF measure was 1.28 (subpopulation range 0.96-1.93). The National Young Adult Health Survey cigarette smoking prevalence was consistent with the National Health Interview Survey overall (15%, CI 12.4%-18% [unweighted 149/831] vs 13.5%, CI 12.3%-14.7% [unweighted 823/5552]), with notable deviation among 18- to 24-year-olds (15.6%, CI 11.3%-22.2% [unweighted 51/337] vs 8.7%, CI 7.1%-10.6% [unweighted 167/1647]), and those with education levels lower than Bachelor of Arts or Science (24%, CI 19.3%-29.4% [unweighted 123/524] vs 17.1%, CI 15.6%-18.7% [unweighted 690/3493]). Conclusions: RDD sampling for a web survey is not feasible for young adults due to its low response rate. However, combining this methodology with RDD telephone surveys may have a great potential for including media and collecting autophotographic data in population surveys. %M 34932017 %R 10.2196/31545 %U https://www.jmir.org/2021/12/e31545 %U https://doi.org/10.2196/31545 %U http://www.ncbi.nlm.nih.gov/pubmed/34932017 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 4 %P e17723 %T Recruitment and Retention of Parents of Adolescents in a Text Messaging Trial (MyTeen): Secondary Analysis From a Randomized Controlled Trial %A Chu,Joanna Ting Wai %A Wadham,Angela %A Jiang,Yannan %A Stasiak,Karolina %A Shepherd,Matthew %A Bullen,Christopher %+ The National Institute for Health Innovation, School of Population Health, University of Auckland, Private Bag 92019 Victoria Street West, Auckland, 1142, New Zealand, 64 3737599, jt.chu@auckland.ac.nz %K parenting %K mHealth %K text messaging %K recruitment %D 2021 %7 20.12.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Parenting programs are well established as an effective strategy for enhancing both parenting skills and the well-being of the child. However, recruitment for family programs in clinical and nonclinical settings remains low. Objective: This study aims to describe the recruitment and retention methods used in a text messaging program (MyTeen) trial for parents of adolescents (10-15 years) and identify key lessons learned. We aim to provide insights and direction for researchers who seek to recruit parents and build on the limited literature on recruitment and retention strategies for parenting program trials. Methods: A recruitment plan was developed, monitored, and modified as needed throughout the course of the project. Strategies to facilitate recruitment were identified (eg, program content and recruitment material, staff characteristics, and study procedures). Traditional and web-based recruitment strategies were used. Results: Over a 5-month period, 319 parents or caregivers expressed interest in our study, of which 221 agreed to participate in the study, exceeding our recruitment target of 214 participants. Attrition was low at the 1-month (4.5% overall; intervention group: n=5, 4.6%; control group: n=5, 4.5%) and 3-month follow-ups (9% overall; intervention group: n=10, 9.2%; control group: n=10, 8.9%). Conclusions: The use of web-based recruitment strategies appeared to be most effective for recruiting and retaining parents in a text-messaging program trial. However, we encountered recruitment challenges (ie, underrepresentation of ethnic minority groups and fathers) similar to those reported in the literature. Therefore, efforts to engage ethnic minorities and fathers are needed. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12618000117213; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=374307 %M 34932007 %R 10.2196/17723 %U https://pediatrics.jmir.org/2021/4/e17723 %U https://doi.org/10.2196/17723 %U http://www.ncbi.nlm.nih.gov/pubmed/34932007 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e29737 %T Going Viral: Researching Safely on Social Media %A Vallury,Kari Dee %A Baird,Barbara %A Miller,Emma %A Ward,Paul %+ College of Medicine and Public Health, Flinders University, Sturt Road, Bedford Park, 5042, Australia, 61 0872218200, kari.vallury@flinders.edu.au %K cyber bullying %K online bullying %K research activities %K occupational safety %K research ethics %K students %K bullying %K social media %D 2021 %7 13.12.2021 %9 Viewpoint %J J Med Internet Res %G English %X Safety issues for researchers conducting and disseminating research on social media have been inadequately addressed in institutional policies and practice globally, despite posing significant challenges to research staff and student well-being. In the context of the COVID-19 pandemic and given the myriad of advantages that web-based platforms offer researchers over traditional recruitment, data collection, and research dissemination methods, developing a comprehensive understanding of and guidance on the safe and effective conduct of research in web-based spaces has never been more pertinent. In this paper, we share our experience of using social media to recruit participants for a study on abortion stigma in Australia, which brought into focus the personal, professional, and institutional risks associated with conducting web-based research that goes viral. The lead researcher (KV), a postgraduate student, experienced a barrage of harassment on and beyond social media. The supportive yet uncoordinated institutional response highlighted gaps in practice, guidance, and policy relating to social media research ethics, researcher safety and well-being, planning for and managing web-based and offline risk, and coordinated organizational responses to adverse events. We call for and provide suggestions to inform the development of training, guidelines, and policies that address practical and ethical aspects of using social media for research, mental and physical health and safety risks and management, and the development of coordinated and evidence-based institutional- and individual-level responses to cyberbullying and harassment. Furthermore, we argue the case for the urgent development of this comprehensive guidance around researcher safety on the web, which would help to ensure that universities have the capacity to maximize the potential of social media for research while better supporting the well-being of their staff and students. %M 34898450 %R 10.2196/29737 %U https://www.jmir.org/2021/12/e29737 %U https://doi.org/10.2196/29737 %U http://www.ncbi.nlm.nih.gov/pubmed/34898450 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 12 %P e31860 %T Increasing Participation Rates in Germany’s Skin Cancer Screening Program (HELIOS): Protocol for a Mixed Methods Study %A Steeb,Theresa %A Heppt,Markus V %A Erdmann,Michael %A Wessely,Anja %A Klug,Stefanie J %A Berking,Carola %+ Department of Dermatology, University Hospital Erlangen, Friedrich-Alexander-University Erlangen-Nuremberg, Ulmenweg 18, Erlangen, 91054, Germany, 49 1318545852, theresa.steeb@uk-erlangen.de %K skin cancer %K melanoma %K squamous cell carcinoma %K basal cell carcinoma %K screening %K early detection %K focus group %K mixed methods %K cross-sectional study %K prevention %D 2021 %7 13.12.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: In 2008, a nationwide skin cancer screening (SCS) program was implemented in Germany. However, participation rates remain low. Objective: The overall objective of the HELIOS study is to identify subgroup-specific invitation and communication strategies to increase informed SCS participation in Germany. Methods: Focus group discussions will be performed in Erlangen, Germany, to explore potential invitation and communication strategies as well as possible barriers and motivating factors to participate in SCS. Male and female patients of different age groups who have already been diagnosed with skin cancer, as well as participants without a prior diagnosis of skin cancer, will be invited. Based on these results, an online questionnaire will be developed to identify subgroup-specific invitation strategies. A random sample of 2500 persons from the general population aged >35 years from the Munich area will be contacted to complete the questionnaire. Besides descriptive analysis, multinomial logistic regression will be performed. Additionally, a cluster analysis will be conducted to discover patterns or similarities among the participants. Results: Recruitment for the focus group studies started in February 2021 and is ongoing. As of August 2021, we have enrolled 39 participants. We expect to end enrollment in the qualitative study in September 2021 and to finish the analysis in December 2021. The second part of the study will then start in January 2022. Conclusions: The results of this project will enable us to derive improved and more efficient invitation and communication strategies for SCS. These may be implemented in the future to facilitate increased SCS uptake and early skin cancer detection. International Registered Report Identifier (IRRID): DERR1-10.2196/31860 %M 34898465 %R 10.2196/31860 %U https://www.researchprotocols.org/2021/12/e31860 %U https://doi.org/10.2196/31860 %U http://www.ncbi.nlm.nih.gov/pubmed/34898465 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e31121 %T An Integrated, Scalable, Electronic Video Consent Process to Power Precision Health Research: Large, Population-Based, Cohort Implementation and Scalability Study %A Lajonchere,Clara %A Naeim,Arash %A Dry,Sarah %A Wenger,Neil %A Elashoff,David %A Vangala,Sitaram %A Petruse,Antonia %A Ariannejad,Maryam %A Magyar,Clara %A Johansen,Liliana %A Werre,Gabriela %A Kroloff,Maxwell %A Geschwind,Daniel %+ Center for SMART Health, Institute for Precision Health, David Geffen School of Medicine at UCLA, 10911 Weyburn Ave, Suite 300e, Los Angeles, CA, 90095, United States, 1 3103670148, anaeim@mednet.ucla.edu %K biobanking %K precision medicine %K electronic consent %K privacy %K consent %K patient privacy %K clinical data %K eHealth %K recruitment %K population health %K data collection %K research methods %K video %K research %K validation %K scalability %D 2021 %7 8.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Obtaining explicit consent from patients to use their remnant biological samples and deidentified clinical data for research is essential for advancing precision medicine. Objective: We aimed to describe the operational implementation and scalability of an electronic universal consent process that was used to power an institutional precision health biobank across a large academic health system. Methods: The University of California, Los Angeles, implemented the use of innovative electronic consent videos as the primary recruitment tool for precision health research. The consent videos targeted patients aged ≥18 years across ambulatory clinical laboratories, perioperative settings, and hospital settings. Each of these major areas had slightly different workflows and patient populations. Sociodemographic information, comorbidity data, health utilization data (ambulatory visits, emergency room visits, and hospital admissions), and consent decision data were collected. Results: The consenting approach proved scalable across 22 clinical sites (hospital and ambulatory settings). Over 40,000 participants completed the consent process at a rate of 800 to 1000 patients per week over a 2-year time period. Participants were representative of the adult University of California, Los Angeles, Health population. The opt-in rates in the perioperative (16,500/22,519, 73.3%) and ambulatory clinics (2308/3390, 68.1%) were higher than those in clinical laboratories (7506/14,235, 52.7%; P<.001). Patients with higher medical acuity were more likely to opt in. The multivariate analyses showed that African American (odds ratio [OR] 0.53, 95% CI 0.49-0.58; P<.001), Asian (OR 0.72, 95% CI 0.68-0.77; P<.001), and multiple-race populations (OR 0.73, 95% CI 0.69-0.77; P<.001) were less likely to participate than White individuals. Conclusions: This is one of the few large-scale, electronic video–based consent implementation programs that reports a 65.5% (26,314/40,144) average overall opt-in rate across a large academic health system. This rate is higher than those previously reported for email (3.6%) and electronic biobank (50%) informed consent rates. This study demonstrates a scalable recruitment approach for population health research. %M 34889741 %R 10.2196/31121 %U https://www.jmir.org/2021/12/e31121 %U https://doi.org/10.2196/31121 %U http://www.ncbi.nlm.nih.gov/pubmed/34889741 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 12 %P e28021 %T Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry’s Research Notification Mechanism %A Mehta,Paul %A Raymond,Jaime %A Han,Moon Kwon %A Larson,Theodore %A Berry,James D %A Paganoni,Sabrina %A Mitsumoto,Hiroshi %A Bedlack,Richard Stanley %A Horton,D Kevin %+ Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention, 4770 Buford Hwy NE, Atlanta, GA, 30341, United States, 1 770 488 0556, pum4@cdc.gov %K amyotrophic lateral sclerosis %K Lou Gehrig disease %K motor neuron disease %K clinical trials %K patient recruitment %K National ALS Registry %K research notification mechanism %D 2021 %7 7.12.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Researchers face challenges in patient recruitment, especially for rare, fatal diseases such as amyotrophic lateral sclerosis (ALS). These challenges include obtaining sufficient statistical power as well as meeting eligibility requirements such as age, sex, and study proximity. Similarly, persons with ALS (PALS) face difficulty finding and enrolling in research studies for which they are eligible. Objective: The aim of this study was to describe how the federal Agency for Toxic Substances and Disease Registry’s (ATSDR) National ALS Registry is linking PALS to scientists who are conducting research, clinical trials, and epidemiological studies. Methods: Through the Registry’s online research notification mechanism (RNM), PALS can elect to be notified about new research opportunities. This mechanism allows researchers to upload a standardized application outlining their study design and objectives, and proof of Institutional Review Board approval. If the application is approved, ATSDR queries the Registry for PALS meeting the study’s specific eligibility criteria, and then distributes the researcher’s study material and contact information to PALS via email. PALS then need to contact the researcher directly to take part in any research. Such an approach allows ATSDR to protect the confidentiality of Registry enrollees. Results: From 2013 to 2019, a total of 46 institutions around the United States and abroad have leveraged this tool and over 600,000 emails have been sent, resulting in over 2000 patients conservatively recruited for clinical trials and epidemiological studies. Patients between the ages of 60 and 69 had the highest level of participation, whereas those between the ages of 18 and 39 and aged over 80 had the lowest. More males participated (4170/7030, 59.32%) than females (2860/7030, 40.68%). Conclusions: The National ALS Registry’s RNM benefits PALS by connecting them to appropriate ALS research. Simultaneously, the system benefits researchers by expediting recruitment, increasing sample size, and efficiently identifying PALS meeting specific eligibility requirements. As more researchers learn about and use this mechanism, both PALS and researchers can hasten research and expand trial options for PALS. %M 34878988 %R 10.2196/28021 %U https://www.jmir.org/2021/12/e28021 %U https://doi.org/10.2196/28021 %U http://www.ncbi.nlm.nih.gov/pubmed/34878988 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 7 %N 12 %P e31657 %T Comparing Social Media and In-Person Recruitment: Lessons Learned From Recruiting Substance-Using, Sexual and Gender Minority Adolescents and Young Adults for a Randomized Control Trial %A Parker,Jayelin N %A Hunter,Alexis S %A Bauermeister,Jose A %A Bonar,Erin E %A Carrico,Adam %A Stephenson,Rob %+ Center for Sexuality and Health Disparities, University of Michigan, 400 N Ingalls, Room 3340, Ann Arbor, MI, 48109, United States, 1 2488609446, jayelinp@umich.edu %K HIV testing %K substance use %K recruitment %K sexual and gender minorities %K youth %D 2021 %7 1.12.2021 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Recruiting large samples of diverse sexual and gender minority adolescent and young adults (AYAs) into HIV intervention research is critical to the development and later dissemination of interventions that address the risk factors for HIV transmission among substance-using, sexual and gender minority AYAs. Objective: This paper aimed to describe the characteristics of the samples recruited via social media and in-person methods and makes recommendations for strategies to recruit substance-using, sexual and gender minority AYAs, a hardly reached population that is a priority for HIV prevention research. Methods: Using data from a randomized control trial of an HIV and substance use intervention with sexual and gender minority AYAs, aged 15 to 29 years in southeastern Michigan (n=414), we examined demographic and behavioral characteristics associated with successful recruitment from a range of virtual and physical venues. Results: We found that paid advertisements on Facebook, Instagram, and Grindr offered the largest quantity of eligible participants willing to enroll in the trial. Instagram offered the largest proportion of transgender masculine participants, and Grindr offered the largest proportion of Black/African American individuals. Although we attempted venue-based recruitment at clubs, bars, community centers, and AIDS service organizations, we found it to be unsuccessful for this specific hardly reached population. Social media and geobased dating applications offered the largest pool of eligible participants. Conclusions: Understanding factors associated with successful recruitment has the potential to inform effective and efficient strategies for HIV prevention research with substance-using, sexual and gender AYAs. Trial Registration: ClinicalTrials.gov NCT02945436; https://clinicaltrials.gov/ct2/show/NCT02945436 International Registered Report Identifier (IRRID): RR2-10.2196/resprot.9414 %M 34855613 %R 10.2196/31657 %U https://publichealth.jmir.org/2021/12/e31657 %U https://doi.org/10.2196/31657 %U http://www.ncbi.nlm.nih.gov/pubmed/34855613 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 11 %P e30761 %T Limited Interaction Targeted Epidemiology of HIV in Sexual and Gender Minority American Adolescents and Adults: Feasibility of the Keeping it LITE Study %A Gleason,Neil %A Serrano,Pedro A %A Muñoz,Alejandro %A French,Audrey %A Hosek,Sybil %+ Ruth M Rothstein CORE Center, Cook County Health, 2020 W Harrison St,, Chicago, IL, 60612, United States, 1 (312) 572 4500, pserrano@cookcountyhhs.org %K social epidemiology %K adolescents and young adults %K sexual and gender minorities %K HIV testing %D 2021 %7 26.11.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: HIV infection rates among sexual minority men and transgender individuals, particularly adolescents and young adults, remain elevated in the United States despite continued improvement in the HIV public health response. However, there remains a knowledge gap in understanding the barriers faced by this community in receiving HIV care and prevention resources. To address this, the Keeping it LITE study was conducted to assess HIV risk factors and barriers to preventive treatment in a large national cohort of young sexual minority men and transgender individuals at high risk of HIV infection. Objective: This study aims to evaluate the feasibility of enrolling a large remote cohort, challenges encountered in recruitment, and adjustments made to address these challenges. Methods: A large national cohort (n=3444) of young sexual minority men and transgender individuals were recruited. Participants were recruited via advertisements on social media; social apps for lesbian, gay, bisexual, transgender, and queer individuals; print advertising; and word-of-mouth. Before enrolling, participants verified their HIV status using an at-home HIV test or by providing their own testing documentation. Descriptive statistics were generated, and a series of logistic regressions were conducted to evaluate demographic differences between recruitment methods, HIV testing methods, and enrollment status. Results: The Keeping it LITE study was particularly successful in recruiting participants via social media, with over half of the participants recruited from advertisements on social media platforms such as Facebook, Instagram, and Snapchat. Participants were also recruited via word-of-mouth; lesbian, gay, bisexual, transgender, and queer apps (ie, Grindr, Scruff); and print advertisements, and participants recruited from these sources tended to be older and have a higher risk profile. The study was also successful in recruiting a large sample of transgender youth, particularly transgender men and nonbinary individuals. At-home HIV testing was acceptable and more heavily used by younger participants, although several barriers were encountered and overcome in the implementation of this testing. The study had more limited success in recruiting participants aged 13-17 years because of lower enrollment rates and barriers to advertising on social media platforms. The implications of these findings for the future development of HIV research and intervention protocols among sexual minorities and trans youth are discussed. Conclusions: The methods used in the Keeping it LITE study, particularly recruitment via social media, were found to be feasible and acceptable to participants. %M 34346403 %R 10.2196/30761 %U https://formative.jmir.org/2021/11/e30761 %U https://doi.org/10.2196/30761 %U http://www.ncbi.nlm.nih.gov/pubmed/34346403 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 11 %P e29958 %T Using Patient-Generated Health Data From Twitter to Identify, Engage, and Recruit Cancer Survivors in Clinical Trials in Los Angeles County: Evaluation of a Feasibility Study %A Reuter,Katja %A Angyan,Praveen %A Le,NamQuyen %A Buchanan,Thomas A %+ Department of Public Health and Preventive Medicine, The State University of New York Upstate Medical University, 766 Irving Avenue, Syracuse, NY, 13210, United States, 1 3154641520, reuterk@upstate.edu %K breast cancer %K cancer %K clinical research %K clinical trial %K colon cancer %K infoveillance %K kidney cancer %K lung cancer %K lymphoma %K patient engagement %K prostate cancer %K recruitment %K Twitter %K social media %D 2021 %7 26.11.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Failure to find and attract clinical trial participants remains a persistent barrier to clinical research. Researchers increasingly complement recruitment methods with social media–based methods. We hypothesized that user-generated data from cancer survivors and their family members and friends on the social network Twitter could be used to identify, engage, and recruit cancer survivors for cancer trials. Objective: This pilot study aims to examine the feasibility of using user-reported health data from cancer survivors and family members and friends on Twitter in Los Angeles (LA) County to enhance clinical trial recruitment. We focus on 6 cancer conditions (breast cancer, colon cancer, kidney cancer, lymphoma, lung cancer, and prostate cancer). Methods: The social media intervention involved monitoring cancer-specific posts about the 6 cancer conditions by Twitter users in LA County to identify cancer survivors and their family members and friends and contacting eligible Twitter users with information about open cancer trials at the University of Southern California (USC) Norris Comprehensive Cancer Center. We reviewed both retrospective and prospective data published by Twitter users in LA County between July 28, 2017, and November 29, 2018. The study enrolled 124 open clinical trials at USC Norris. We used descriptive statistics to report the proportion of Twitter users who were identified, engaged, and enrolled. Results: We analyzed 107,424 Twitter posts in English by 25,032 unique Twitter users in LA County for the 6 cancer conditions. We identified and contacted 1.73% (434/25,032) of eligible Twitter users (127/434, 29.3% cancer survivors; 305/434, 70.3% family members and friends; and 2/434, 0.5% Twitter users were excluded). Of them, 51.4% (223/434) were female and approximately one-third were male. About one-fifth were people of color, whereas most of them were White. Approximately one-fifth (85/434, 19.6%) engaged with the outreach messages (cancer survivors: 33/85, 38% and family members and friends: 52/85, 61%). Of those who engaged with the messages, one-fourth were male, the majority were female, and approximately one-fifth were people of color, whereas the majority were White. Approximately 12% (10/85) of the contacted users requested more information and 40% (4/10) set up a prescreening. Two eligible candidates were transferred to USC Norris for further screening, but neither was enrolled. Conclusions: Our findings demonstrate the potential of identifying and engaging cancer survivors and their family members and friends on Twitter. Optimization of downstream recruitment efforts such as screening for digital populations on social media may be required. Future research could test the feasibility of the approach for other diseases, locations, languages, social media platforms, and types of research involvement (eg, survey research). Computer science methods could help to scale up the analysis of larger data sets to support more rigorous testing of the intervention. Trial Registration: ClinicalTrials.gov NCT03408561; https://clinicaltrials.gov/ct2/show/NCT03408561 %M 34842538 %R 10.2196/29958 %U https://formative.jmir.org/2021/11/e29958 %U https://doi.org/10.2196/29958 %U http://www.ncbi.nlm.nih.gov/pubmed/34842538 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 11 %P e33608 %T Evaluating the Impact of Incentives on Clinical Trial Participation: Protocol for a Mixed Methods, Community-Engaged Study %A Galea,Jerome T %A Greene,Karah Y %A Nguyen,Brandon %A Polonijo,Andrea N %A Dubé,Karine %A Taylor,Jeff %A Christensen,Christopher %A Zhang,Zhiwei %A Brown,Brandon %+ School of Social Work, College of Behavioral and Community Sciences, University of South Florida, 13301 Bruce B Downs Blvd, MHC 1400, Tampa, FL, 33612, United States, 1 8139742310, jeromegalea@usf.edu %K incentives %K ethics %K research participation %K stakeholder advisory board %K HIV %D 2021 %7 23.11.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: Monetary incentives in research are frequently used to support participant recruitment and retention. However, there are scant empirical data regarding how researchers decide upon the type and amount of incentives offered. Likewise, there is little guidance to assist study investigators and institutional review boards (IRBs) in their decision-making on incentives. Monetary incentives, in addition to other factors such as the risk of harm or other intangible benefits, guide individuals’ decisions to enroll in research studies. These factors emphasize the need for evidence-informed guidance for study investigators and IRBs when determining the type and amount of incentives to provide to research participants. Objective: The specific aims of our research project are to (1) characterize key stakeholders’ views on and assessments of incentives in biomedical HIV research; (2) reach consensus among stakeholders on the factors that are considered when choosing research incentives, including consensus on the relative importance of such factors; and (3) pilot-test the use of the guidance developed via aims 1 and 2 by presenting stakeholders with vignettes of hypothetical research studies for which they will choose corresponding incentive types. Methods: Our 2-year study will involve monthly, active engagement with a stakeholder advisory board of people living with HIV, researchers, and IRB members. For aim 1, we will conduct a nationwide survey (N=300) among people living with HIV to understand their views regarding the incentives used in HIV research. For aim 2, we will collect qualitative data by conducting focus groups with people living with HIV (n=60) and key informant interviews with stakeholders involved in HIV research (people living with HIV, IRB members, and biomedical HIV researchers: n=36) to extend and deepen our understanding of how incentives in HIV research are perceived. These participants will also complete a conjoint analysis experiment to gain an understanding of the relative importance of key HIV research study attributes and the impact that these attributes have on study participation. The data from the nationwide survey (aim 1) will be triangulated with the qualitative and conjoint analysis data (aim 2) to create 25 vignettes that describe hypothetical HIV research studies. Finally, individuals from each stakeholder group will select the most appropriate incentive that they feel should be used in each of the 25 vignettes (aim 3). Results: The stakeholder advisory board began monthly meetings in March 2021. All study aims are expected to be completed by December 2022. Conclusions: By studying the role of incentives in HIV clinical trial participation, we will establish a decision-making paradigm to guide the choice of incentives for HIV research and, eventually, other types of similar research and facilitate the ethical recruitment of clinical research participants. Trial Registration: ClinicalTrials.gov NCT04809636; https://clinicaltrials.gov/ct2/show/NCT04809636 International Registered Report Identifier (IRRID): DERR1-10.2196/33608 %M 34817381 %R 10.2196/33608 %U https://www.researchprotocols.org/2021/11/e33608 %U https://doi.org/10.2196/33608 %U http://www.ncbi.nlm.nih.gov/pubmed/34817381 %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 %@ 1438-8871 %I JMIR Publications %V 23 %N 11 %P e21142 %T Recruiting Participants for Population Health Intervention Research: Effectiveness and Costs of Recruitment Methods for a Cohort Study %A Wasfi,Rania %A Poirier Stephens,Zoe %A Sones,Meridith %A Laberee,Karen %A Pugh,Caitlin %A Fuller,Daniel %A Winters,Meghan %A Kestens,Yan %+ Centre for Surveillance and Applied Research, Public Health Agency of Canada, 785 Carling Avenue, Ottawa, ON, K1A 0K9, Canada, 1 3435537356, rania.wasfi@phac-aspc.gc.ca %K recruitment methods %K Facebook recruitment %K cost-effectiveness %K built environment %K intervention research %K natural experiment %K mobile phone %D 2021 %7 12.11.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Public health research studies often rely on population-based participation and draw on various recruitment methods to establish samples. Increasingly, researchers are turning to web-based recruitment tools. However, few studies detail traditional and web-based recruitment efforts in terms of costs and potential biases. Objective: This study aims to report on and evaluate the cost-effectiveness, time effectiveness, and sociodemographic representation of diverse recruitment methods used to enroll participants in 3 cities of the Interventions, Research, and Action in Cities Team (INTERACT) study, a cohort study conducted in Canadian cities. Methods: Over 2017 and 2018 in Vancouver, Saskatoon, and Montreal, the INTERACT study used the following recruitment methods: mailed letters, social media (including sponsored Facebook advertisements), news media, partner communications, snowball recruitment, in-person recruitment, and posters. Participation in the study involved answering web-based questionnaires (at minimum), activating a smartphone app to share sensor data, and wearing a device for mobility and physical activity monitoring. We describe sociodemographic characteristics by the recruitment method and analyze performance indicators, including cost, completion rate, and time effectiveness. Effectiveness included calculating cost per completer (ie, a participant who completed at least one questionnaire), the completion rate of a health questionnaire, and the delay between completion of eligibility and health questionnaires. Cost included producing materials (ie, printing costs), transmitting recruitment messages (ie, mailing list rental, postage, and sponsored Facebook posts charges), and staff time. In Montreal, the largest INTERACT sample, we modeled the number of daily recruits through generalized linear models accounting for the distributed lagged effects of recruitment campaigns. Results: Overall, 1791 participants were recruited from 3 cities and completed at least one questionnaire: 318 in Vancouver, 315 in Saskatoon, and 1158 in Montreal. In all cities, most participants chose to participate fully (questionnaires, apps, and devices). The costs associated with a completed participant varied across recruitment methods and by city. Facebook advertisements generated the most recruits (n=687), at a cost of CAD $15.04 (US $11.57; including staff time) per completer. Mailed letters were the costliest, at CAD $108.30 (US $83.3) per completer but served to reach older participants. All methods resulted in a gender imbalance, with women participating more, specifically with social media. Partner newsletters resulted in the participation of younger adults and were cost-efficient (CAD $5.16 [US $3.97] per completer). A generalized linear model for daily Montreal recruitment identified 2-day lag effects on most recruitment methods, except for the snowball campaign (4 days), letters (15 days), and reminder cards (5 days). Conclusions: This study presents comprehensive data on the costs, effectiveness, and bias of population recruitment in a cohort study in 3 Canadian cities. More comprehensive documentation and reporting of recruitment efforts across studies are needed to improve our capacity to conduct inclusive intervention research. %M 34587586 %R 10.2196/21142 %U https://www.jmir.org/2021/11/e21142 %U https://doi.org/10.2196/21142 %U http://www.ncbi.nlm.nih.gov/pubmed/34587586 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 11 %P e26136 %T Conducting Health Literacy Research With Hard-to-Reach Regional Culturally and Linguistically Diverse Populations: Evaluation Study of Recruitment and Retention Methods Before and During COVID-19 %A Perrins,Genevieve %A Ferdous,Tabassum %A Hay,Dawn %A Harreveld,Bobby %A Reid-Searl,Kerry %+ Central Queensland Multicultural Association, CQUniversity Rockhampton North, Room 31, Building 41 Buzacott Circle, 554-700 Yaamba Road, Norman Gardens, Rockhampton, 4701, Australia, 61 423853809, evie.perrins@cqma.org.au %K health literacy %K cultural and linguistic diversity %K COVID-19 %K health care barriers %K hard-to-reach research participants %K regional Australia %K health literacy profiles %K literacy %D 2021 %7 2.11.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: In health research, culturally and linguistically diverse (CALD) health care consumers are cited as hidden or hard to reach. This paper evaluates the approach used by researchers to attract and retain hard-to-reach CALD research participants for a study investigating health communication barriers between CALD health care users and health care professionals in regional Australia. As the study was taking place during the COVID-19 pandemic, subsequent restrictions emerged. Thus, recruitment and retention methods were adapted. This evaluation considered the effectiveness of recruitment and retention used throughout the pre-COVID and during-COVID periods. Objective: This evaluation sought to determine the effectiveness of recruitment and retention efforts of researchers during a study that targeted regional hard-to-reach CALD participants. Methods: Recruitment and retention methods were categorized into the following 5 phases: recruitment, preintervention data collection, intervention, postintervention data collection, and interviews. To compare the methods used by researchers, recruitment and retention rates were divided into pre-COVID and during-COVID periods. Thereafter, in-depth reflections of the methods employed within this study were made. Results: This paper provides results relating to participant recruitment and retainment over the course of 5 research phases that occurred before and during COVID. During the pre-COVID recruitment phase, 22 participants were recruited. Of these participants, 15 (68%) transitioned to the next phase and completed the initial data collection phase. By contrast, 18 participants completed the during-COVID recruitment phase, with 13 (72%) continuing to the next phase. The success rate of the intervention phase in the pre-COVID period was 93% (14/15), compared with 84.6% (11/13) in the during-COVID period. Lastly, 93% (13/14) of participants completed the postintervention data collection in the pre-COVID period, compared with 91% (10/11) in the during-COVID period. In total, 40 participants took part in the initial data collection phase, with 23 (58%) completing the 5 research phases. Owing to the small sample size, it was not determined if there was any statistical significance between the groups (pre- and during-COVID periods). Conclusions: The success of this program in recruiting and maintaining regional hard-to-reach CALD populations was preserved over the pre- and during-COVID periods. The pandemic required researchers to adjust study methods, thereby inadvertently contributing to the recruitment and retention success of the project. The maintenance of participants during this period was due to flexibility offered by researchers through adaptive methods, such as the use of cultural gatekeepers, increased visibility of CALD researchers, and use of digital platforms. The major findings of this evaluation are 2-fold. First, increased diversity in the research sample required a high level of flexibility from researchers, meaning that such projects may be more resource intensive. Second, community organizations presented a valuable opportunity to connect with potential hard-to-reach research participants. %M 34581673 %R 10.2196/26136 %U https://formative.jmir.org/2021/11/e26136 %U https://doi.org/10.2196/26136 %U http://www.ncbi.nlm.nih.gov/pubmed/34581673 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e19789 %T Willingness to Share Wearable Device Data for Research Among Mechanical Turk Workers: Web-Based Survey Study %A Taylor,Casey Overby %A Flaks-Manov,Natalie %A Ramesh,Shankar %A Choe,Eun Kyoung %+ Departments of Medicine and Biomedical Engineering, Johns Hopkins University School of Medicine, 217D Hackerman Hall, 3101 Wyman Park Dr, Baltimore, MD, 21218, United States, 1 4432876657, cot@jhu.edu %K wearables %K personal data %K research participation %K crowdsourcing %D 2021 %7 21.10.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Wearable devices that are used for observational research and clinical trials hold promise for collecting data from study participants in a convenient, scalable way that is more likely to reach a broad and diverse population than traditional research approaches. Amazon Mechanical Turk (MTurk) is a potential resource that researchers can use to recruit individuals into studies that use data from wearable devices. Objective: This study aimed to explore the characteristics of wearable device users on MTurk that are associated with a willingness to share wearable device data for research. We also aimed to determine whether compensation was a factor that influenced the willingness to share such data. Methods: This was a secondary analysis of a cross-sectional survey study of MTurk workers who use wearable devices for health monitoring. A 19-question web-based survey was administered from March 1 to April 5, 2018, to participants aged ≥18 years by using the MTurk platform. In order to identify characteristics that were associated with a willingness to share wearable device data, we performed logistic regression and decision tree analyses. Results:  A total of 935 MTurk workers who use wearable devices completed the survey. The majority of respondents indicated a willingness to share their wearable device data (615/935, 65.8%), and the majority of these respondents were willing to share their data if they received compensation (518/615, 84.2%). The findings from our logistic regression analyses indicated that Indian nationality (odds ratio [OR] 2.74, 95% CI 1.48-4.01, P=.007), higher annual income (OR 2.46, 95% CI 1.26-3.67, P=.02), over 6 months of using a wearable device (OR 1.75, 95% CI 1.21-2.29, P=.006), and the use of heartbeat and pulse tracking monitoring devices (OR 1.60, 95% CI 0.14-2.07, P=.01) are significant parameters that influence the willingness to share data. The only factor associated with a willingness to share data if compensation is provided was Indian nationality (OR 0.47, 95% CI 0.24-0.9, P=.02). The findings from our decision tree analyses indicated that the three leading parameters associated with a willingness to share data were the duration of wearable device use, nationality, and income. Conclusions: Most wearable device users indicated a willingness to share their data for research use (with or without compensation; 615/935, 65.8%). The probability of having a willingness to share these data was higher among individuals who had used a wearable for more than 6 months, were of Indian nationality, or were of American (United States of America) nationality and had an annual income of more than US $20,000. Individuals of Indian nationality who were willing to share their data expected compensation significantly less often than individuals of American nationality (P=.02). %M 34673528 %R 10.2196/19789 %U https://www.jmir.org/2021/10/e19789 %U https://doi.org/10.2196/19789 %U http://www.ncbi.nlm.nih.gov/pubmed/34673528 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 9 %N 10 %P e33192 %T A Patient-Screening Tool for Clinical Research Based on Electronic Health Records Using OpenEHR: Development Study %A Li,Mengyang %A Cai,Hailing %A Nan,Shan %A Li,Jialin %A Lu,Xudong %A Duan,Huilong %+ College of Biomedical Engineering and Instrument Science, Zhejiang University, Yuquan Campus, 38 Zheda Road, Hangzhou, 310027, China, 86 13957118891, lvxd@zju.edu.cn %K openEHR %K patient screening %K electronic health record %K clinical research %D 2021 %7 21.10.2021 %9 Original Paper %J JMIR Med Inform %G English %X Background: The widespread adoption of electronic health records (EHRs) has facilitated the secondary use of EHR data for clinical research. However, screening eligible patients from EHRs is a challenging task. The concepts in eligibility criteria are not completely matched with EHRs, especially derived concepts. The lack of high-level expression of Structured Query Language (SQL) makes it difficult and time consuming to express them. The openEHR Expression Language (EL) as a domain-specific language based on clinical information models shows promise to represent complex eligibility criteria. Objective: The study aims to develop a patient-screening tool based on EHRs for clinical research using openEHR to solve concept mismatch and improve query performance. Methods: A patient-screening tool based on EHRs using openEHR was proposed. It uses the advantages of information models and EL in openEHR to provide high-level expressions and improve query performance. First, openEHR archetypes and templates were chosen to define concepts called simple concepts directly from EHRs. Second, openEHR EL was used to generate derived concepts by combining simple concepts and constraints. Third, a hierarchical index corresponding to archetypes in Elasticsearch (ES) was generated to improve query performance for subqueries and join queries related to the derived concepts. Finally, we realized a patient-screening tool for clinical research. Results: In total, 500 sentences randomly selected from 4691 eligibility criteria in 389 clinical trials on stroke from the Chinese Clinical Trial Registry (ChiCTR) were evaluated. An openEHR-based clinical data repository (CDR) in a grade A tertiary hospital in China was considered as an experimental environment. Based on these, 589 medical concepts were found in the 500 sentences. Of them, 513 (87.1%) concepts could be represented, while the others could not be, because of a lack of information models and coarse-grained requirements. In addition, our case study on 6 queries demonstrated that our tool shows better query performance among 4 cases (66.67%). Conclusions: We developed a patient-screening tool using openEHR. It not only helps solve concept mismatch but also improves query performance to reduce the burden on researchers. In addition, we demonstrated a promising solution for secondary use of EHR data using openEHR, which can be referenced by other researchers. %M 34673526 %R 10.2196/33192 %U https://medinform.jmir.org/2021/10/e33192 %U https://doi.org/10.2196/33192 %U http://www.ncbi.nlm.nih.gov/pubmed/34673526 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e28923 %T General Practice and Digital Methods to Recruit Stroke Survivors to a Clinical Mobility Study: Comparative Analysis %A Reuter,Katja %A Liu,Chang %A Le,NamQuyen %A Angyan,Praveen %A Finley,James M %+ Department of Public Health & Preventive Medicine, SUNY Upstate Medical University, Weiskotten Hall Rm. 2263, 766 Irving Avenue, Syracuse, NY, 13210, United States, 1 315 464 5540, reuterk@upstate.edu %K clinical trial %K stroke %K falls %K digital media %K social media %K advertising %K participant recruitment %K Facebook %K Google %K clinical research %K research methods %K recruitment practices %K enrollment %D 2021 %7 13.10.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Participant recruitment remains a barrier to conducting clinical research. The disabling nature of a stroke, which often includes functional and cognitive impairments, and the acute stage of illness at which patients are appropriate for many trials make recruiting patients particularly complex and challenging. In addition, people aged 65 years and older, which includes most stroke survivors, have been identified as a group that is difficult to reach and is commonly underrepresented in health research, particularly clinical trials. Digital media may provide effective tools to support enrollment efforts of stroke survivors in clinical trials. Objective: The objective of this study was to compare the effectiveness of general practice (traditional) and digital (online) methods of recruiting stroke survivors to a clinical mobility study. Methods: Recruitment for a clinical mobility study began in July 2018. Eligible study participants included individuals 18 years and older who had a single stroke and were currently ambulatory in the community. General recruiting practice included calling individuals listed in a stroke registry, contacting local physical therapists, and placing study flyers throughout a university campus. Between May 21, 2019, and June 26, 2019, the study was also promoted digitally using the social network Facebook and the search engine marketing tool Google AdWords. The recruitment advertisements (ads) included a link to the study page to which users who clicked were referred. Primary outcomes of interest for both general practice and digital methods included recruitment speed (enrollment rate) and sample characteristics. The data were analyzed using the Lilliefors test, the Welch two-sample t test, and the Mann-Whitney test. Significance was set at P=.05. All statistical analyses were performed in MATLAB 2019b. Results: Our results indicate that digital recruitment methods can address recruitment challenges regarding stroke survivors. Digital recruitment methods allowed us to enroll study participants at a faster rate (1.8 participants/week) compared to using general practice methods (0.57 participants/week). Our findings also demonstrate that digital and general recruitment practices can achieve an equivalent level of sample representativeness. The characteristics of the enrolled stroke survivors did not differ significantly by age (P=.95) or clinical scores (P=.22; P=.82). Comparing the cost-effectiveness of Facebook and Google, we found that the use of Facebook resulted in a lower cost per click and cost per enrollee per ad. Conclusions: Digital recruitment can be used to expedite participant recruitment of stroke survivors compared to more traditional recruitment practices, while also achieving equivalent sample representativeness. Both general practice and digital recruitment methods will be important to the successful recruitment of stroke survivors. Future studies could focus on testing the effectiveness of additional general practice and digital media approaches and include robust cost-effectiveness analyses. Examining the effectiveness of different messaging and visual approaches tailored to culturally diverse and underrepresented target subgroups could provide further data to move toward evidence-based recruitment strategies. %M 34643544 %R 10.2196/28923 %U https://www.jmir.org/2021/10/e28923 %U https://doi.org/10.2196/28923 %U http://www.ncbi.nlm.nih.gov/pubmed/34643544 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 10 %P e23312 %T Engaging Institutional Stakeholders to Develop and Implement Guidelines for Recruiting Participants in Research Studies Using Social Media: Mixed Methods, Multi-Phase Process %A Flood-Grady,Elizabeth %A Solberg,Lauren B %A Baralt,Claire %A Meyer,Meghan %A Stevens,Jeff %A Krieger,Janice L %+ STEM Translational Communication Center, College of Journalism and Communications, University of Florida, PO Box 118400, Gainesville, FL, 32611, United States, 1 352 273 0240, efloodgrady@ufl.edu %K social media %K research recruitment %K stakeholder engagement %K health communication %D 2021 %7 8.10.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Limited regulatory guidance surrounding the use of social media channels for participant recruitment is an interdisciplinary challenge. Establishing stakeholder-informed procedures is essential for ethical and effective use of social media for participant recruitment. Objective: This study aims to provide replicable procedures for developing and implementing guidelines for using social media to recruit participants in research studies. Methods: Social media use cases at the university were used to identify institutional stakeholders for the initiative. After establishing workflow procedures, a scoping review of web-based materials about recruitment and research on the internet and social media from 19 peer institutions and 2 federal agencies was conducted to inform the structure of the policies and procedures. End users (investigators and study coordinators; N=14) also provided feedback on the policies and procedures and implementation. Results: Representatives (n=7) from 5 institutional offices and 15 subject-matter experts from 5 areas were identified as stakeholders in the development of policies and procedures. Peers with web-based materials (n=16) identified in the scoping review revealed 4 themes that served as a basis for developing our policies and procedures. End user feedback further informed the policies and procedures and implementation. A centrally managed social media account for communicating with participants and hosting advertising campaigns on social media was also established and, when combined with the policies and procedures, resulted in 39 advertising campaigns, and 2846 participants were enrolled in health and clinical research studies. Conclusions: Our policies and procedures allow research teams to harness the potential of social media to increase study recruitment and participation; the transparent, stakeholder-informed process can be replicated by institutional administrators to establish policies and procedures that meet the interests and needs of their research community. %M 34623319 %R 10.2196/23312 %U https://www.jmir.org/2021/10/e23312 %U https://doi.org/10.2196/23312 %U http://www.ncbi.nlm.nih.gov/pubmed/34623319 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 9 %P e22313 %T Precision Public Health Campaign: Delivering Persuasive Messages to Relevant Segments Through Targeted Advertisements on Social Media %A An,Jisun %A Kwak,Haewoon %A Qureshi,Hanya M %A Weber,Ingmar %+ School of Computing and Information Systems, Singapore Management University, 80 Stamford Road, Singapore, 178902, Singapore, 65 6826 4809, jisun.an@acm.org %K precision public health %K tailored health communication %K social media advertising %K Facebook advertising %K public health campaigns %K effectiveness of campaigns %K public health %K advertising %D 2021 %7 24.9.2021 %9 Viewpoint %J JMIR Form Res %G English %X Although established marketing techniques have been applied to design more effective health campaigns, more often than not, the same message is broadcasted to large populations, irrespective of unique characteristics. As individual digital device use has increased, so have individual digital footprints, creating potential opportunities for targeted digital health interventions. We propose a novel precision public health campaign framework to structure and standardize the process of designing and delivering tailored health messages to target particular population segments using social media–targeted advertising tools. Our framework consists of five stages: defining a campaign goal, priority audience, and evaluation metrics; splitting the target audience into smaller segments; tailoring the message for each segment and conducting a pilot test; running the health campaign formally; and evaluating the performance of the campaigns. We have demonstrated how the framework works through 2 case studies. The precision public health campaign framework has the potential to support higher population uptake and engagement rates by encouraging a more standardized, concise, efficient, and targeted approach to public health campaign development. %M 34559055 %R 10.2196/22313 %U https://formative.jmir.org/2021/9/e22313 %U https://doi.org/10.2196/22313 %U http://www.ncbi.nlm.nih.gov/pubmed/34559055 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 7 %N 3 %P e25621 %T Analysis of Population Differences in Digital Conversations About Cancer Clinical Trials: Advanced Data Mining and Extraction Study %A Perez,Edith A %A Jaffee,Elizabeth M %A Whyte,John %A Boyce,Cheryl A %A Carpten,John D %A Lozano,Guillermina %A Williams,Raymond M %A Winkfield,Karen M %A Bernstein,David %A Poblete,Sung %+ Stand Up To Cancer, 10880 Wilshire Blvd, Los Angeles, CA, 90024, United States, 1 929 253 6728, dbernstein@su2c.org %K cancer %K clinical trials %K data mining %K text extraction %K social media %K race and ethnicity %K health communication %K health care disparities %K natural language processing %D 2021 %7 23.9.2021 %9 Original Paper %J JMIR Cancer %G English %X Background: Racial and ethnic diversity in clinical trials for cancer treatment is essential for the development of treatments that are effective for all patients and for identifying potential differences in toxicity between different demographics. Mining of social media discussions about clinical trials has been used previously to identify patient barriers to enrollment in clinical trials; however, a comprehensive breakdown of sentiments and barriers by various racial and ethnic groups is lacking. Objective: The aim of this study is to use an innovative methodology to analyze web-based conversations about cancer clinical trials and to identify and compare conversation topics, barriers, and sentiments between different racial and ethnic populations. Methods: We analyzed 372,283 web-based conversations about cancer clinical trials, of which 179,339 (48.17%) of the discussions had identifiable race information about the individual posting the conversations. Using sophisticated machine learning software and analyses, we were able to identify key sentiments and feelings, topics of interest, and barriers to clinical trials across racial groups. The stage of treatment could also be identified in many of the discussions, allowing for a unique insight into how the sentiments and challenges of patients change throughout the treatment process for each racial group. Results: We observed that only 4.01% (372,283/9,284,284) of cancer-related discussions referenced clinical trials. Within these discussions, topics of interest and identified clinical trial barriers discussed by all racial and ethnic groups throughout the treatment process included health care professional interactions, cost of care, fear, anxiety and lack of awareness, risks, treatment experiences, and the clinical trial enrollment process. Health care professional interactions, cost of care, and enrollment processes were notably discussed more frequently in minority populations. Other minor variations in the frequency of discussion topics between ethnic and racial groups throughout the treatment process were identified. Conclusions: This study demonstrates the power of digital search technology in health care research. The results are also valuable for identifying the ideal content and timing for the delivery of clinical trial information and resources for different racial and ethnic groups. %M 34554099 %R 10.2196/25621 %U https://cancer.jmir.org/2021/3/e25621 %U https://doi.org/10.2196/25621 %U http://www.ncbi.nlm.nih.gov/pubmed/34554099 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 9 %P e13790 %T Applicability of Different Electronic Record Types for Use in Patient Recruitment Support Systems: Comparative Analysis %A Schreiweis,Björn %A Brandner,Antje %A Bergh,Björn %+ Institute for Medical Informatics and Statistics, Kiel University and University Hospital Schleswig-Holstein, Arnold-Heller-Str 3, Kiel, 24105, Germany, 49 431500 ext 31601, bjoern.schreiweis@uksh.de %K clinical trials %K patient recruitment support system %K PRSS %K electronic medical record %K EMR %K electronic health record %K EHR %K personal health record %K PHR %K personal enterprise health record %K PEHR %K clinical trial recruitment support system %K CTRSS. %D 2021 %7 21.9.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Clinical trials constitute an important pillar in medical research. It is beneficial to support recruitment for clinical trials using software tools, so-called patient recruitment support systems; however, such information technology systems have not been frequently used to date. Because medical information systems' underlying data collection methods strongly influence the benefits of implementing patient recruitment support systems, we investigated patient recruitment support system requirements and corresponding electronic record types such as electronic medical record, electronic health record, electronic medical case record, personal health record, and personal cross-enterprise health record. Objective: The aim of this study was to (1) define requirements for successful patient recruitment support system deployment and (2) differentiate and compare patient recruitment support system–relevant properties of different electronic record types. Methods: In a previous study, we gathered requirements for patient recruitment support systems from literature and unstructured interviews with stakeholders (15 patients, 3 physicians, 5 data privacy experts, 4 researchers, and 5 staff members of hospital administration). For this investigation, the requirements were amended and categorized based on input from scientific sessions. Based on literature with a focus on patient recruitment support system–relevant properties, different electronic record types (electronic medical record, electronic health record, electronic medical case record, personal health record and personal cross-enterprise health record) were described in detail. We also evaluated which patient recruitment support system requirements can be achieved for each electronic record type. Results: Patient recruitment support system requirements (n=16) were grouped into 4 categories (consent management, patient recruitment management, trial management, and general requirements). All 16 requirements could be partially met by at least 1 type of electronic record. Only 1 requirement was fully met by all 5 types. According to our analysis, personal cross-enterprise health records fulfill most requirements for patient recruitment support systems. They demonstrate advantages especially in 2 domains (1) supporting patient empowerment and (2) granting access to the complete medical history of patients. Conclusions: In combination with patient recruitment support systems, personal cross-enterprise health records prove superior to other electronic record types, and therefore, this integration approach should be further investigated. %M 34546175 %R 10.2196/13790 %U https://formative.jmir.org/2021/9/e13790 %U https://doi.org/10.2196/13790 %U http://www.ncbi.nlm.nih.gov/pubmed/34546175 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 9 %P e26869 %T Identifying Enablers of Participant Engagement in Clinical Trials of Consumer Health Technologies: Qualitative Study of Influenza Home Testing %A Dharanikota,Spurthy %A LeRouge,Cynthia M %A Lyon,Victoria %A Durneva,Polina %A Thompson,Matthew %+ Department of Information Systems and Business Analytics, Florida International University, 11200 SW 8th Street, Miami, FL, 33199, United States, 1 3057812536, sdhar006@fiu.edu %K consumer health care technologies %K CHTs %K smartphone-supported home tests %K Smart-HT %K premarket clinical trials %K trial engagement %K at-home diagnostic testing %K mobile phone %D 2021 %7 14.9.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: A rise in the recent trend of self-managing health using consumer health technologies highlights the importance of efficient and successful consumer health technology trials. Trials are particularly essential to support large-scale implementations of consumer health technologies, such as smartphone-supported home tests. However, trials are generally fraught with challenges, such as inadequate enrollment, lack of fidelity to interventions, and high dropout rates. Understanding the reasons underlying individuals’ participation in trials can inform the design and execution of future trials of smartphone-supported home tests. Objective: This study aims to identify the enablers of potential participants’ trial engagement for clinical trials of smartphone-supported home tests. We use influenza home testing as our instantiation of a consumer health technology subject to trial to investigate the dispositional and situational enablers that influenced trial engagement. Methods: We conducted semistructured interviews with 31 trial participants using purposive sampling to facilitate demographic diversity. The interviews included a discussion of participants’ personal characteristics and external factors that enabled their trial engagement with a smartphone-supported home test for influenza. We performed both deductive and inductive thematic analyses to analyze the interview transcripts and identify enabler themes. Results: Our thematic analyses revealed a structure of dispositional and situational enablers that enhanced trial engagement. Situationally, clinical affiliation, personal advice, promotional recruitment strategies, financial incentives, and insurance status influenced trial engagement. In addition, digital health literacy, motivation to advance medical research, personal innovativeness, altruism, curiosity, positive attitude, and potential to minimize doctors’ visits were identified as the dispositional enablers for trial engagement in our study. Conclusions: We organized the identified themes for dispositional and situational enablers of trial engagement with a smartphone-supported home test into a research framework that can guide future research as well as the trial design and execution of smartphone-supported home tests. We suggest several trial design and engagement strategies to enhance the financial and scientific viability of these trials that pave the way for advancements in patient care. Furthermore, our study also offers practical strategies to trial organizers to enhance participants’ enrollment and engagement in clinical trials of these home tests. %M 34519664 %R 10.2196/26869 %U https://www.jmir.org/2021/9/e26869 %U https://doi.org/10.2196/26869 %U http://www.ncbi.nlm.nih.gov/pubmed/34519664 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 9 %P e25405 %T Collecting Social Media Information in a Substance Use Intervention Trial With Adolescent Girls With Lifetime Substance Use History: Observational Study %A Ramos,Lili M C %A Delgadillo,Joseline %A Vélez,Sarah %A Dauria,Emily %A Salas,Jamie %A Tolou-Shams,Marina %+ Department of Psychiatry and Behavioral Sciences, University of California, San Francisco, 1001 Potrero Ave, San Francisco, CA, 94110, United States, 1 (628) 206 2212, Marina.Tolou-Shams@ucsf.edu %K adolescent girls %K legal involvement %K substance use %K social media %K health intervention %D 2021 %7 10.9.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Adolescents with juvenile legal system contact face numerous barriers to participation in behavioral health intervention research, including housing disruption, legal privacy concerns, and systems mistrust. Technology, such as social media, may be a novel and developmentally appropriate adolescent research study engagement and retention tool. Objective: We examined data on social media information collected for study retention purposes from adolescents participating in a substance use intervention trial. Methods: Data were collected as part of a randomized controlled trial determining efficacy of a group-based substance use intervention for girls and young women (12-24 years) with substance use histories referred from legal and school systems in the United States. Baseline demographic and social media information was analyzed from the subset of 114 adolescent girls (mean age 15.7 years; range 13-18 years), of whom 31.6% (36/114) were legally involved, 87.7% (100/114) belonged to minoritized racial/ethnic groups, and 32.5% (37/114) received public assistance. Results: Most girls (74/114, 64.9%) provided at least one social media account (Instagram, 95% [70/74]; Facebook, 27% [20/74]; and Twitter, 11% [8/74]) during study enrollment. Legally involved girls were significantly less likely to provide social media information than school-referred girls (44% [16/36] versus 74% [58/78]; χ21 [N=114]=9.68, P=.002). Conclusions: Obtaining social media information for study retention purposes from adolescent girls with lifetime substance use appears possible; however, particular subgroups (ie, legally involved girls) may be less likely to provide accounts. Factors shaping legally involved girls’ willingness to provide social media information, including mistrust and privacy concerns, and the impact of researcher’s access to social media information on study retention are critical directions for future research. Trial Registration: ClinicalTrials.gov NCT02293057; https://clinicaltrials.gov/ct2/show/NCT02293057 %M 34505833 %R 10.2196/25405 %U https://formative.jmir.org/2021/9/e25405 %U https://doi.org/10.2196/25405 %U http://www.ncbi.nlm.nih.gov/pubmed/34505833 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 6 %N 3 %P e21356 %T Comparison of Communication Channels for Large-Scale Type 2 Diabetes Risk Screening and Intervention Recruitment: Empirical Study %A Jalkanen,Kari %A Järvenpää,Riia %A Tilles-Tirkkonen,Tanja %A Martikainen,Janne %A Aarnio,Emma %A Männikkö,Reija %A Rantala,Eeva %A Karhunen,Leila %A Kolehmainen,Marjukka %A Harjumaa,Marja %A Poutanen,Kaisa %A Ermes,Miikka %A Absetz,Pilvikki %A Schwab,Ursula %A Lakka,Timo %A Pihlajamäki,Jussi %A Lindström,Jaana %A , %+ School of Pharmacy, Faculty of Health Sciences, University of Eastern Finland, Department of Pharmacy, Yliopistonranta 1, Kuopio, 70210, Finland, 358 503819658, kari.jalkanen@uef.fi %K communication %K digital tool %K prevention %K public health campaign %K risk identification %K screening %K social media %K study recruitment %K type 2 diabetes %K mobile phone %D 2021 %7 9.9.2021 %9 Original Paper %J JMIR Diabetes %G English %X Background: Clinical trials have shown that type 2 diabetes (T2D) is preventable through lifestyle interventions targeting high-risk people. Nevertheless, large-scale implementation of risk identification followed by preventive interventions has proven to be challenging. Specifically, recruitment of participants into preventive interventions is an important but often overlooked part of the intervention. Objective: This study aims to compare the reach and yield of different communication channels to engage people at increased risk of T2D to fill in a digital screening questionnaire, with emphasis on reaching those at most risk. The participants expressing their willingness to participate is the final step in the risk screening test, and we aim to determine which channels had the most participants reach this step. Methods: We established a stepwise web-based T2D risk screening tool with automated feedback according to the T2D risk level and, for those who were eligible, an invitation to participate in the StopDia prevention intervention study conducted in a primary health care setting. The risk estimate was based on the Finnish Diabetes Risk Score; history of repeatedly measured high blood glucose concentration; or, among women, previous gestational diabetes. We used several channels to invite people to the StopDia web-based screening tool, and respondents were classified into 11 categories based on the channel through which they reported having learned about StopDia. The demographics of respondents reached via different communication channels were compared using variance analysis. Logistic regression was used to study the respondents’ likelihood of progressing through risk screening steps. Results: A total of 33,399 persons started filling the StopDia screening tool. Of these, 86.13% (28,768/33,399) completed the test and named at least one communication channel as the source of information about StopDia. Altogether, 26,167 persons filled in sufficient information to obtain risk estimates. Of them, 53.22% (13,925/26,167) were at increased risk, 30.06% (7866/26,167) were men, and 39.77% (10,136/25,485) had low or middle education levels. Most frequently mentioned channels were workplace (n=6817), social media or the internet (n=6712), and newspapers (n=4784). The proportion of individuals at increased risk was highest among those reached via community pharmacies (415/608, 68.3%) and health care (1631/2535, 64.33%). The communication channel reaching the largest percentage of interested and eligible men (1353/3979, 34%) was relatives or friends. Health care (578/1069, 54.07%) and radio or television (225/487, 46.2%) accounted for the largest proportion of people with lower education. Conclusions: Communication channels reaching a large number of people, such as social media and newspapers, were the most effective channels for identifying at-risk people. Personalized approaches increased the engagement of men and less-educated people. Community pharmacies and health care services reached people with a particularly high T2D risk. Thus, communication and recruitment channels should be selected and modified based on the intended target group. International Registered Report Identifier (IRRID): RR2-10.1186/s12889-019-6574-y %M 34499036 %R 10.2196/21356 %U https://diabetes.jmir.org/2021/3/e21356 %U https://doi.org/10.2196/21356 %U http://www.ncbi.nlm.nih.gov/pubmed/34499036 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 9 %N 8 %P e28232 %T Methods for Authenticating Participants in Fully Web-Based Mobile App Trials from the iReach Project: Cross-sectional Study %A Guest,Jodie L %A Adam,Elizabeth %A Lucas,Iaah L %A Chandler,Cristian J %A Filipowicz,Rebecca %A Luisi,Nicole %A Gravens,Laura %A Leung,Kingsley %A Chavanduka,Tanaka %A Bonar,Erin E %A Bauermeister,Jose A %A Stephenson,Rob %A Sullivan,Patrick S %+ Department of Epidemiology , Rollins School of Public Health, Emory University, 1518 Clifton Rd Suite 462, Atlanta, GA, 30322, United States, 1 4046802450, Jodie.Guest@emory.edu %K HIV %K mHealth %K recruitment %K fraud %K adolescent MSM %K prevention %K MSM %K RCT %K enrollment %K data authentication %K data quality %K methods %K participants %D 2021 %7 31.8.2021 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Mobile health apps are important interventions that increase the scale and reach of prevention services, including HIV testing and prevention counseling, pre-exposure prophylaxis, condom distribution, and education, of which all are required to decrease HIV incidence rates. The use of these web-based apps as well as fully web-based intervention trials can be challenged by the need to remove fraudulent or duplicate entries and authenticate unique trial participants before randomization to protect the integrity of the sample and trial results. It is critical to ensure that the data collected through this modality are valid and reliable. Objective: The aim of this study is to discuss the electronic and manual authentication strategies for the iReach randomized controlled trial that were used to monitor and prevent fraudulent enrollment. Methods: iReach is a randomized controlled trial that focused on same-sex attracted, cisgender males (people assigned male at birth who identify as men) aged 13-18 years in the United States and on enrolling people of color and those in rural communities. The data were evaluated by identifying possible duplications in enrollment, identifying potentially fraudulent or ineligible participants through inconsistencies in the data collected at screening and survey data, and reviewing baseline completion times to avoid enrolling bots and those who did not complete the baseline questionnaire. Electronic systems flagged questionable enrollment. Additional manual reviews included the verification of age, IP addresses, email addresses, social media accounts, and completion times for surveys. Results: The electronic and manual strategies, including the integration of social media profiles, resulted in the identification and prevention of 624 cases of potential fraudulent, duplicative, or ineligible enrollment. A total of 79% (493/624) of the potentially fraudulent or ineligible cases were identified through electronic strategies, thereby reducing the burden of manual authentication for most cases. A case study with a scenario, resolution, and authentication strategy response was included. Conclusions: As web-based trials are becoming more common, methods for handling suspicious enrollments that compromise data quality have become increasingly important for inclusion in protocols. International Registered Report Identifier (IRRID): RR2-10.2196/10174 %M 34463631 %R 10.2196/28232 %U https://mhealth.jmir.org/2021/8/e28232 %U https://doi.org/10.2196/28232 %U http://www.ncbi.nlm.nih.gov/pubmed/34463631 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e25973 %T Turn on, Tune in, and Drop out: Predictors of Attrition in a Prospective Observational Cohort Study on Psychedelic Use %A Hübner,Sebastian %A Haijen,Eline %A Kaelen,Mendel %A Carhart-Harris,Robin Lester %A Kettner,Hannes %+ Centre for Psychedelic Research, Imperial College London, Du Cane Rd, Burlington Danes Building, London, W12 0TY, United Kingdom, 44 020 7589 5111, hannes.kettner17@imperial.ac.uk %K attrition %K digital data %K dropout %K educational level %K personality %K psychedelics %K web-based research %K web-based survey %D 2021 %7 28.7.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: The resurgence of research and public interest in the positive psychological effects of psychedelics, together with advancements in digital data collection techniques, have brought forth a new type of research design, which involves prospectively gathering large-scale naturalistic data from psychedelic users; that is, before and after the use of a psychedelic compound. A methodological limitation of such studies is their high attrition rate, particularly owing to participants who stop responding after initial study enrollment. Importantly, study dropout can introduce systematic biases that may affect the interpretability of results. Objective: Based on a previously collected sample (baseline n=654), here we investigated potential determinants of study attrition in web-based prospective studies on psychedelic use. Methods: Logistic regression models were used to examine demographic, psychological trait and state, and psychedelic-specific predictors of dropout. Predictors were assessed 1 week before, 1 day after, and 2 weeks after psychedelic use, with attrition being defined as noncompletion of the key endpoint 4 weeks post experience. Results: Predictors of attrition were found among demographic variables including age (β=0.024; P=.007) and educational levels, as well as personality traits, specifically conscientiousness (β=–0.079; P=.02) and extraversion (β=0.082; P=.01). Contrary to prior hypotheses, neither baseline attitudes toward psychedelics nor the intensity of acute challenging experiences were predictive of dropout. Conclusions: The baseline predictors of attrition identified here are consistent with those reported in longitudinal studies in other scientific disciplines, suggesting their transdisciplinary relevance. Moreover, the lack of an association between attrition and psychedelic advocacy or negative drug experiences in our sample contextualizes concerns about problematic biases in these and related data. %M 34319246 %R 10.2196/25973 %U https://www.jmir.org/2021/7/e25973 %U https://doi.org/10.2196/25973 %U http://www.ncbi.nlm.nih.gov/pubmed/34319246 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e26284 %T Efficacy and Cost-effectiveness of Promotion Methods to Recruit Participants to an Online Screening Registry for Alzheimer Disease Prevention Trials: Observational Study %A Sato,Kenichiro %A Niimi,Yoshiki %A Ihara,Ryoko %A Suzuki,Kazushi %A Toda,Tatsushi %A Iwata,Atsushi %A Iwatsubo,Takeshi %+ Department of Neuropathology, Graduate School of Medicine, The University of Tokyo, Hongo 7-3-1, Bunkyo-ku, Tokyo, , Japan, 81 3 3815 5411, iwatsubo@m.u-tokyo.ac.jp %K online clinical study %K promotion %K advertisement %K cost-effectiveness %K Trial-Ready Cohort %K preclinical Alzheimer disease %K clinical trial %K Alzheimer %K dementia %K recruitment %D 2021 %7 22.7.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Web-based screening may be suitable for identifying individuals with presymptomatic latent diseases for recruitment to clinical studies, as such people do not often visit hospitals in the presymptomatic stage. The promotion of such online screening studies is critical to their success, although it remains uncertain how the effectiveness of such promotion can differ, depending on the different promotion methods, domains of interest, or countries of implementation. Objective: The Japanese Trial-Ready Cohort (J-TRC) web study is our ongoing online screening registry to identify individuals with presymptomatic Alzheimer disease (AD), aimed at facilitating the clinical trials for AD prevention. Within the first 9 months of its 2019 launch, the J-TRC web study recruited thousands of online participants via multiple methods of promotion, including press releases, newspaper advertisements, web advertisements, or direct email invitations. Here, we aimed to quantitatively evaluate efficacy and cost-effectiveness of each of these multimodal promotion methods. Methods: We applied the vector-autoregression model to assess the degree of contribution of each type of promotion to the following target metrics: number of daily visitors to the J-TRC website, number of daily registrants to the J-TRC web study, daily rate of registration among visitors, daily rate of eligible participants among registrants, and median age of daily registrants. The average cost-effectiveness for each promotion method was also calculated using the total cost and the coefficients in the vector-autoregression model. Results: During the first 9 months of the reviewed period from October 31, 2019 to June 17, 2020, there were 48,334 website visitors and 4429 registrations (9.16% of 48,334 visitors), of which 3081 (69.56%) were eligible registrations. Initial press release reports and newspaper advertisements had a marked effect on increasing the number of daily visitors and daily registrants. Web advertisements significantly contributed to the increase in daily visitors (P<.001) but not to the daily registrants, and it also lowered the rate of registrations and the median age of daily registrants. Website visitors from the direct email invitation sent to other cognitive registries seem to have registered with the highest reliability. The calculated average cost-effectiveness for the initial press release was US $24.60 per visitor and US $96.10 per registrant, while the calculated average cost-effectiveness for the newspaper advertisements was US $28.60 per visitor and US $227.90 per registrant. Conclusions: Our multivariate time-series analysis showed that each promotion method had different features in their effect of recruiting participants to the J-TRC web study. Under the advertisement condition settings thus far, newspaper advertisements and initial press releases were the most effective promotion methods, with fair cost-effectiveness that was equivalent to earlier online studies. These results can provide important suggestions for future promotions for the recruitment of presymptomatic participants to AD clinical trials in Japan. %M 34292159 %R 10.2196/26284 %U https://www.jmir.org/2021/7/e26284 %U https://doi.org/10.2196/26284 %U http://www.ncbi.nlm.nih.gov/pubmed/34292159 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 7 %P e23959 %T Recruitment and Retention Strategies Among Racial and Ethnic Minorities in Web-Based Intervention Trials: Retrospective Qualitative Analysis %A Hwang,DaSol Amy %A Lee,Alex %A Song,Jae Min %A Han,Hae-Ra %+ Johns Hopkins University School of Nursing, 525 N Wolfe St, Room 533, Baltimore, MD, 21205, United States, 1 410 614 2669, hhan3@jh.edu %K recruitment and retention %K web-based intervention %K clinical trial %K Korean American %K racial/ethnic minority %D 2021 %7 12.7.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Racial and ethnic minority groups are underrepresented in health research, contributing to persistent health disparities in the United States. Identifying effective recruitment and retention strategies among minority groups and their subpopulations is an important research agenda. Web-based intervention approaches are becoming increasingly popular with the ubiquitous use of the internet. However, it is not completely clear which recruitment and retention strategies have been successful in web-based intervention trials targeting racial and ethnic minorities. Objective: This study aims to describe lessons learned in recruiting and retaining one of the understudied ethnic minority women—Korean Americans—enrolled in a web-based intervention trial and to compare our findings with the strategies reported in relevant published web-based intervention trials. Methods: Multiple sources of data were used to address the objectives of this study, including the study team’s meeting minutes, participant tracking and contact logs, survey reports, and postintervention interviews. In addition, an electronic search involving 2 databases (PubMed and CINAHL) was performed to identify published studies using web-based interventions. Qualitative analysis was then performed to identify common themes addressing recruitment and retention strategies across the trials using web-based intervention modalities. Results: A total of 9 categories of recruitment and retention strategies emerged: authentic care; accommodation of time, place, and transportation; financial incentives; diversity among the study team; multiple, yet standardized modes of communication; mobilizing existing community relationships with efforts to build trust; prioritizing features of web-based intervention; combined use of web-based and direct recruitment; and self-directed web-based intervention with human support. Although all the studies included in the analysis combined multiple strategies, prioritizing features of web-based intervention or use of human support were particularly relevant for promoting recruitment and retention of racial and ethnic minorities in web-based intervention trials. Conclusions: The growing prevalence of internet use among racial and ethnic minority populations represents an excellent opportunity to design and deliver intervention programs via the internet. Future research should explore and compare successful recruitment and retention methods among race and ethnic groups for web-based interventions. Trial Registration: ClinicalTrials.gov NCT03726619; https://clinicaltrials.gov/ct2/show/NCT03726619. %M 34255658 %R 10.2196/23959 %U https://www.jmir.org/2021/7/e23959 %U https://doi.org/10.2196/23959 %U http://www.ncbi.nlm.nih.gov/pubmed/34255658 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 6 %N 3 %P e28309 %T Evaluation of Web-Based and In-Person Methods to Recruit Adults With Type 1 Diabetes for a Mobile Exercise Intervention: Prospective Observational Study %A Ash,Garrett I %A Griggs,Stephanie %A Nally,Laura M %A Stults-Kolehmainen,Matthew %A Jeon,Sangchoon %A Brandt,Cynthia %A Gulanski,Barbara I %A Spanakis,Elias K %A Baker,Julien S %A Whittemore,Robin %A Weinzimer,Stuart A %A Fucito,Lisa M %+ Pain, Research, Informatics, Medical Comorbidities and Education Center, Veterans Affairs Connecticut Healthcare System, 11-ACSLG, Building 35A, Rm 235, 950 Campbell Ave, West Haven, CT, 06516, United States, 1 2034443079, garrett.ash@yale.edu %K type 1 diabetes mellitus %K exercise %K behavior and behavior mechanisms %K mobile phone %D 2021 %7 8.7.2021 %9 Original Paper %J JMIR Diabetes %G English %X Background: Our clinical trial of a mobile exercise intervention for adults 18 to 65 years old with type 1 diabetes (T1D) occurred during COVID-19 social distancing restrictions, prompting us to test web-based recruitment methods previously underexplored for this demographic. Objective: Our objectives for this study were to (1) evaluate the effectiveness and cost of using social media news feed advertisements, a clinic-based approach method, and web-based snowball sampling to reach inadequately active adults with T1D and (2) compare characteristics of enrollees against normative data. Methods: Participants were recruited between November 2019 and August 2020. In method #1, Facebook and Instagram news feed advertisements ran for five 1-to-8-day windows targeting adults (18 to 64 years old) in the greater New Haven and Hartford, Connecticut, areas with one or more diabetes-related profile interest. If interested, participants completed a webform so that the research team could contact them for eligibility screening. In method #2, patients 18 to 24 years old with T1D were approached in person at clinical visits in November and December 2019. Those who were interested immediately completed eligibility screening. Older patients could not be approached due to clinic restrictions. In method #3, snowball sampling was conducted by physically active individuals with T1D contacting their peers on Facebook and via email for 48 days, with details to contact the research staff to express interest and complete eligibility screening. Other methods referred participants to the study similarly to snowball sampling. Results: In method #1, advertisements were displayed to 11,738 unique viewers and attracted 274 clickers (2.33%); 20 participants from this group (7.3%) volunteered, of whom 8 (40%) were eligible. Costs averaged US $1.20 per click and US $95.88 per eligible volunteer. Men had lower click rates than women (1.71% vs 3.17%; P<.001), but their responsiveness and eligibility rates did not differ. In method #2, we approached 40 patients; 32 of these patients (80%) inquired about the study, of whom 20 (63%) volunteered, and 2 of these volunteers (10%) were eligible. Costs including personnel for in-person approaches averaged US $21.01 per inquirer and US $479.79 per eligible volunteer. In method #3, snowball sampling generated 13 inquirers; 12 of these inquirers (92%) volunteered, of whom 8 (67%) were eligible. Incremental costs to attract inquirers were negligible, and total costs averaged US $20.59 per eligible volunteer. Other methods yielded 7 inquirers; 5 of these inquirers (71%) volunteered, of whom 2 (40%) were eligible. Incremental costs to attract inquirers were negligible, and total costs averaged US $34.94 per eligible volunteer. Demographic overrepresentations emerged in the overall cohort (ie, optimal glycemic control, obesity, and low exercise), among those recruited by news feed advertisements (ie, obesity and older age), and among those recruited by snowball sampling (ie, optimal glycemic control and low exercise). Conclusions: Web-based advertising and recruitment strategies are a promising means to attract adults with T1D to clinical trials and exercise interventions, with costs comparing favorably to prior trials despite targeting an uncommon condition (ie, T1D) and commitment to an intervention. These strategies should be tailored in future studies to increase access to higher-risk participants. Trial Registration: ClinicalTrials.gov NCT04204733; https://clinicaltrials.gov/ct2/show/NCT04204733 %M 34047700 %R 10.2196/28309 %U https://diabetes.jmir.org/2021/3/e28309 %U https://doi.org/10.2196/28309 %U http://www.ncbi.nlm.nih.gov/pubmed/34047700 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 7 %P e28656 %T Social Media as a Platform for Recruitment to a National Survey During the COVID-19 Pandemic: Feasibility and Cost Analysis %A Green,Heidi %A Fernandez,Ritin %A MacPhail,Catherine %+ School of Nursing, University of Wollongong, Northfields Ave, 2522, Wollongong, Australia, 61 0412108532, Heidi.Lord@health.nsw.gov.au %K social media %K survey %K online recruitment %K COVID-19 %K pandemic %K methodology %D 2021 %7 6.7.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: With improved accessibility to social media globally, health researchers are capitalizing on social media platforms to recruit participants for research studies. This has particularly been the case during the COVID-19 pandemic, when researchers were not able to use traditional methods of recruitment. Nevertheless, there is limited evidence on the feasibility of social media for recruiting a national sample. Objective: This paper describes the use of social media as a tool for recruiting a national sample of adults to a web-based survey during the COVID-19 pandemic. Methods: Between August and October 2020, participants were recruited through Facebook via two advertisement campaigns (paid option and no-cost option) into a web-based survey exploring the relationship between social determinants of health and well-being of adults during the COVID-19 pandemic. Data were analyzed using SPSS software and Facebook metrics that were autogenerated by Facebook Ads Manager. Poststratification weights were calculated to match the Australian population on the basis of gender, age, and state or territory based on the 2016 Australian census data. Results: In total, 9594 people were reached nationally with the paid option and potentially 902,000 people were reached through the no-cost option, resulting in a total of 1211 survey responses. The total cost of the advertisement campaign was Aus $649.66 (US $489.23), resulting in an overall cost per click of Aus $0.25 (US $0.19). Conclusions: Facebook is a feasible and cost-effective method of recruiting participants for a web-based survey, enabling recruitment of population groups that are considered hard to reach or marginalized. Recruitment through Facebook facilitated diversity, with participants varying in socioeconomic status, geographical location, educational attainment, and age. %M 34133315 %R 10.2196/28656 %U https://formative.jmir.org/2021/7/e28656 %U https://doi.org/10.2196/28656 %U http://www.ncbi.nlm.nih.gov/pubmed/34133315 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 7 %P e24433 %T Self-reported Subjective Effects of Analytically Confirmed New Psychoactive Substances Consumed by e-Psychonauts: Protocol for a Longitudinal Study Using a New Internet-Based Methodology %A Grifell,Marc %A Mir Fuster,Guillem %A Ventura Vilamala,Mireia %A Galindo Guarín,Liliana %A Carbón Mallol,Xoán %A Hart,Carl L %A Pérez Sola,Víctor %A Colom Victoriano,Francesc %+ Mental Health Research Group, Hospital del Mar Medical Research Institute, Dr Aiguader, 88, Barcelona, 08003, Spain, 34 933160400 ext 129, marcgrifellguardia@gmail.com %K psychotropic %K psychoactive %K psychonautic %K longitudinal %K observational %K pharmacology %K psychopharmacology %K subjective effects %K sentinel %K mental health %K public health %K internet %K eHealth %K cathinones %K drugs of abuse %K psychedelics %K mobile phone %K smart phone %K online recruitment %K online forums %D 2021 %7 2.7.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: During the last few years, the continuous emergence of new psychoactive substances (NPS) has become an important public health challenge. The use of NPS has been rising in two different ways: buying and consuming NPS knowingly and the presence of NPS in traditional drugs as adulterants. The rise of NPS use is increasing the number of different substances in the market to an extent impossible to study with current scientific methodologies. This has caused a remarkable absence of necessary information about newer drug effects on people who use drugs, mental health professionals, and policy makers. Current scientific methodologies have failed to provide enough data in the timeframe when critical decisions must be made, being not only too slow but also too square. Last but not least, they dramatically lack the high resolution of phenomenological details. Objective: This study aims to characterize a population of e-psychonauts and the subjective effects of the NPS they used during the study period using a new, internet-based, fast, and inexpensive methodology. This will allow bridging an evidence gap between online surveys, which do not provide substance confirmation, and clinical trials, which are too slow and expensive to keep up with the new substances appearing every week. Methods: To cover this purpose, we designed a highly personalized, observational longitudinal study methodology. Participants will be recruited from online communities of people who use NPS, and they will be followed online by means of a continuous objective and qualitative evaluation lasting for at least 1 year. In addition, participants will send samples of the substances they intend to use during that period, so they can be analyzed and matched with the effects they report on the questionnaires. Results: The research protocol was approved by the Institutional Review Board of the Hospital del Mar Research Institute on December 11, 2018. Data collection started in August 2019 and was still ongoing when the protocol was submitted (September 2020). The first data collection period of the study ended in October 2020. Data analysis began in November 2020, and it is still ongoing. The authors expect to submit the first results for publication by the end of 2021. A preliminary analysis was conducted when the manuscript was submitted and was reviewed after it was accepted in February 2021. Conclusions: It is possible to conduct an institutional review board–approved study using this new methodology and collect the expected data. However, the meaning and usefulness of these data are still unknown. International Registered Report Identifier (IRRID): DERR1-10.2196/24433 %M 34255715 %R 10.2196/24433 %U https://www.researchprotocols.org/2021/7/e24433 %U https://doi.org/10.2196/24433 %U http://www.ncbi.nlm.nih.gov/pubmed/34255715 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 6 %P e28952 %T A Web-Based Intervention to Increase Smokers’ Intentions to Participate in a Cessation Study Offered at the Point of Lung Screening: Factorial Randomized Trial %A Neil,Jordan M %A Chang,Yuchiao %A Goshe,Brett %A Rigotti,Nancy %A Gonzalez,Irina %A Hawari,Saif %A Ballini,Lauren %A Haas,Jennifer S %A Marotta,Caylin %A Wint,Amy %A Harris,Kim %A Crute,Sydney %A Flores,Efren %A Park,Elyse R %+ Health Promotion Research Center, Stephenson Cancer Center, University of Oklahoma Health Sciences Center, 655 Research Parkway, 1404, Oklahoma City, OK, 73104, United States, 1 6034430743, jordan-neil@ouhsc.edu %K clinical trials recruitment %K digital outreach %K message design experiment %K smoking cessation %K lung cancer screening %K prospect theory %D 2021 %7 30.6.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Screen ASSIST is a cessation trial offered to current smokers at the point of lung cancer screening. Because of the unique position of promoting a prevention behavior (smoking cessation) within the context of a detection behavior (lung cancer screening), this study employed prospect theory to design and formatively evaluate a targeted recruitment video prior to trial launch. Objective: The aim of this study was to identify which message frames were most effective at promoting intent to participate in a smoking cessation study. Methods: Participants were recruited from a proprietary opt-in online panel company and randomized to a 2 (benefits of quitting vs risks of continuing to smoke at the time of lung screening; BvR) × 2 (gains of participating vs losses of not participating in a cessation study; GvL) message design experiment (N=314). The primary outcome was self-assessed intent to participate in a smoking cessation study. Message effectiveness and lung cancer risk perception measures were also collected. Analysis of variance examined the main effect of the 2 message factors and a least absolute shrinkage and selection operator (LASSO) approach identified predictors of intent to participate in a multivariable model. A mediation analysis was conducted to determine the direct and indirect effects of message factors on intent to participate in a cessation study. Results: A total of 296 participants completed the intervention. There were no significant differences in intent to participate in a smoking cessation study between message frames (P=.12 and P=.61). In the multivariable model, quit importance (P<.001), perceived message relevance (P<.001), and affective risk response (ie, worry about developing lung cancer; P<.001) were significant predictors of intent to participate. The benefits of quitting frame significantly increased affective risk response (Meanbenefits 2.60 vs Meanrisk 2.40; P=.03), which mediated the relationship between message frame and intent to participate (b=0.24; 95% CI 0.01-0.47; P=.03). Conclusions: This study provides theoretical and practical guidance on how to design and evaluate proactive recruitment messages for a cessation trial. Based on our findings, we conclude that heavy smokers are more responsive to recruitment messages that frame the benefits of quitting as it increased affective risk response, which predicted greater intention to participate in a smoking cessation study. %M 34255651 %R 10.2196/28952 %U https://formative.jmir.org/2021/6/e28952 %U https://doi.org/10.2196/28952 %U http://www.ncbi.nlm.nih.gov/pubmed/34255651 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 6 %P e28864 %T Engaging Sexual and Gender Minority Youth in HIV Interventions Through Gay Dating Apps: Recruitment Protocol %A Ocasio,Manuel A %A Fernandez,Maria Isabel %A Joseph,Ja'Lon M %A Rezai,Roxana %A , %+ Department of Pediatrics, School of Medicine, Tulane University, 1440 Canal Street, Ste. 966, New Orleans, LA, 70112, United States, 1 504 988 3864, mocasio@tulane.edu %K HIV/AIDS %K adolescents %K recruitment %K dating apps %K msm %K mHealth %K gender %K gay %K behavior interventions %K mobile phone %D 2021 %7 22.6.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: HIV continues to disproportionately impact sexual and gender minority youth (SGMY) in the United States. Public health efforts have increasingly focused on developing efficacious interventions to curb the spread of HIV among SGMY and help those living with HIV achieve and sustain viral suppression. However, recruiting and engaging SGMY in prevention and care interventions is challenging. Objective: During the past decade, gay dating apps have quickly emerged as popular web-based spaces in which SGMY congregate. Although the recruitment of SGMY through these apps has been commonly reported, advertisement is the typical modality used, and direct recruitment approaches are not adequately described. This study aims to describe the process for developing a direct recruitment protocol for use in gay dating apps. Methods: The Adolescent Medicine Trials Network Comprehensive Adolescent Research and Engagement Studies is a community-based research program consisting of 3 interrelated studies testing scalable behavioral interventions to improve HIV prevention and care engagement among youth aged 12-24 years in Los Angeles and New Orleans. To supplement our in-person recruitment approaches for Comprehensive Adolescent Research and Engagement Studies, the New Orleans site formed a gay dating app recruitment team. In April 2018, the team developed a loosely structured protocol that included study-specific profiles and sample language to guide initial recruitment efforts. Two self-identified Black, gay cisgender male field recruiters field-tested the protocol on the popular gay dating app Jack’d. During the field test, the recruitment team met weekly to discuss the recruiters’ experiences and user reactions. For example, we learned the importance of addressing concerns about study legitimacy and identifying appropriate ways to describe the study. We iteratively incorporated these lessons learned into the final protocol and developed a training program and tracking procedures before moving to full-scale implementation at both sites. Results: Adhering to this protocol yielded 162 enrollments in New Orleans (332 total enrollments across the two sites) throughout the recruitment period (April 2018 to August 2019). Most of these participants were sexual minority cisgender males (91%), and the remainder were identified as members of gender minority groups. We outlined step-by-step instructions on training staff, engaging users, and scheduling and tracking recruitment activities. Conclusions: This paper provides a practical guide for researchers and community-based providers to implement a gay dating app recruitment protocol. Our experience indicates that gay dating app recruitment is feasible and fruitful when the staff members are knowledgeable, flexible, honest, and respectful to the user. Perhaps the most salient lesson we learned in approaching gay dating app users is the importance of setting clear and transparent intentions without judgment. As gay dating apps continue to increase in popularity, researchers need to stay vigilant to changing formats and develop systematic approaches to harness their potential as invaluable recruitment strategies for SGMY. International Registered Report Identifier (IRRID): RR1-10.2196/28864 %M 34156342 %R 10.2196/28864 %U https://www.researchprotocols.org/2021/6/e28864 %U https://doi.org/10.2196/28864 %U http://www.ncbi.nlm.nih.gov/pubmed/34156342 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 6 %P e28884 %T Motivation and Problem Solving Versus Mobile 360° Videos to Promote Enrollment in the National Diabetes Prevention Program’s Lifestyle Change Program Among People With Prediabetes: Protocol for a Randomized Trial %A Gibson,Bryan %A Simonsen,Sara %A Barton,Jonathan %A Zhang,Yue %A Altizer,Roger %A Lundberg,Kelly %A Wetter,David W %+ Department of Biomedical Informatics, University of Utah, 421 Wakara Way, Salt Lake City, UT, 84148, United States, 1 801 585 0929, Bryan.Gibson@utah.edu %K diabetes prevention program %K mobile video %K motivation and problem solving %K program enrollment %K participant engagement %K prediabetes %D 2021 %7 14.6.2021 %9 Protocol %J JMIR Res Protoc %G English %X Background: More than 88 million Americans are at risk of developing type 2 diabetes mellitus (T2DM). The National Diabetes Prevention Program’s Lifestyle Change Program (DPP LCP) has been shown to be effective in reducing the risk of progressing from prediabetes to T2DM. However, most individuals who could benefit from the program do not enroll. Objective: The aim of this trial is to test the real-world efficacy of 3 mobile phone–based approaches to increasing enrollment in the DPP LCP including a best-practice condition and 2 novel approaches. Methods: We will conduct a 3-armed randomized clinical trial comparing enrollment and 1-month engagement in the DPP LCP among adults with prediabetes from 2 health care settings. Participants in the best-practice condition will receive SMS-based notifications that they have prediabetes and a link to a website that explains prediabetes, T2DM, and the DPP LCP. This will be followed by a single question survey, “Would you like the DPP LCP to call you to enroll?” Participants in the 2 intervention arms will receive the same best-practice intervention plus either 2 mobile 360° videos or up to 5 brief phone calls from a health coach trained in a motivational coaching approach known as Motivation and Problem Solving (MAPS). We will collect measures of diabetes-related knowledge, beliefs in the controllability of risk for T2DM, risk perceptions for T2DM, and self-efficacy for lifestyle change pre-intervention and 4 weeks later. The primary outcomes of the study are enrollment in the DPP LCP and 4-week engagement in the DPP LCP. In addition, data on the person-hours needed to deliver the interventions as well as participant feedback about the interventions and their acceptability will be collected. Our primary hypotheses are that the 2 novel interventions will lead to higher enrollment and engagement in the DPP LCP than the best-practice intervention. Secondary hypotheses concern the mechanisms of action of the 2 intervention arms: (1) whether changes in risk perception are associated with program enrollment among participants in the mobile 360° video group and (2) whether changes in self-efficacy for lifestyle change are associated with program enrollment among participants in the MAPS coaching group. Finally, exploratory analyses will examine the cost effectiveness and acceptability of the interventions. Results: The project was funded in September 2020; enrollment began in February 2021 and is expected to continue through July 2022. Conclusions: We are conducting a test of 2 novel, scalable, mobile phone–based interventions to increase enrollment in the DPP LCP. If effective, they have tremendous potential to be scaled up to help prevent T2DM nationwide. Trial Registration: ClinicalTrials.gov NCT04746781; https://clinicaltrials.gov/ct2/show/NCT04746781 International Registered Report Identifier (IRRID): DERR1-10.2196/28884 %M 34125075 %R 10.2196/28884 %U https://www.researchprotocols.org/2021/6/e28884 %U https://doi.org/10.2196/28884 %U http://www.ncbi.nlm.nih.gov/pubmed/34125075 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 6 %P e23118 %T Expanding the Reach of Research: Quantitative Evaluation of a Web-Based Approach for Remote Recruitment of People Who Hear Voices %A Buck,Benjamin %A Chander,Ayesha %A Brian,Rachel M %A Wang,Weichen %A Campbell,Andrew T %A Ben-Zeev,Dror %+ Behavioral Research in Technology and Engineering (BRiTE) Center, Department of Psychiatry and Behavioral Sciences, University of Washington, 1959 NE Pacific Street, Seattle, WA, 98195, United States, 1 206 221 8518, buckbe@uw.edu %K digital health %K research procedures %K recruitment %K mobile phone %D 2021 %7 3.6.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Similar to other populations with highly stigmatized medical or psychiatric conditions, people who hear voices (ie, experience auditory verbal hallucinations [AVH]) are often difficult to identify and reach for research. Technology-assisted remote research strategies reduce barriers to research recruitment; however, few studies have reported on the efficiency and effectiveness of these approaches. Objective: This study introduces and evaluates the efficacy of technology-assisted remote research designed for people who experience AVH. Methods: Our group developed an integrated, automated and human complementary web-based recruitment and enrollment apparatus that incorporated Google Ads, web-based screening, identification verification, hybrid automation, and interaction with live staff. We examined the efficacy of that apparatus by examining the number of web-based advertisement impressions (ie, number of times the web-based advertisement was viewed); clicks on that advertisement; engagement with web-based research materials; and the extent to which it succeeded in representing a broad sample of individuals with AVH, assessed through the self-reported AVH symptom severity and demographic representativeness (relative to the US population) of the sample recruited. Results: Over an 18-month period, our Google Ads advertisement was viewed 872,496 times and clicked on 11,183 times. A total amount of US $4429.25 was spent on Google Ads, resulting in 772 individuals who experience AVH providing consent to participate in an entirely remote research study (US $0.40 per click on the advertisement and US $5.73 per consented participant) after verifying their phone number, passing a competency screening questionnaire, and providing consent. These participants reported high levels of AVH frequency (666/756, 88.1% daily or more), distress (689/755, 91.3%), and functional interference (697/755, 92.4%). They also represented a broad sample of diversity that mirrored the US population demographics. Approximately one-third (264/756, 34.9%) of the participants had never received treatment for their AVH and, therefore, were unlikely to be identified via traditional clinic-based research recruitment strategies. Conclusions: Web-based procedures allow for time saving, cost-efficient, and representative recruitment of individuals with AVH and can serve as a model for future studies focusing on hard-to-reach populations. %M 34081011 %R 10.2196/23118 %U https://formative.jmir.org/2021/6/e23118 %U https://doi.org/10.2196/23118 %U http://www.ncbi.nlm.nih.gov/pubmed/34081011 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 5 %P e24108 %T Using Social Media for Qualitative Health Research in Danish Women of Reproductive Age: Online Focus Group Study on Facebook %A Temmesen,Camilla Gry %A Nielsen,Henriette Svarre %A Andersen,Heidi Lene Myglegård %A Birch Petersen,Kathrine %A Clemensen,Jane %+ Institute of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Winsløwparken 19, 3, Odense, 5000, Denmark, 45 26215135, ctemmesen@health.sdu.dk %K internet %K social media %K Facebook %K online focus groups %K women %K reproduction %K reproductive age %K motherhood %K participatory design %D 2021 %7 31.5.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Social media platforms provide new possibilities within health research. With Facebook being the largest social network in the world, it constitutes a potential platform for recruitment and data collection from women of reproductive age. Women in Denmark and in other Western countries postpone motherhood and risk infertility due to their advanced age when they try to conceive. To date, no study has explored Danish women’s reflections on the timing of motherhood within a social media setting. Objective: The aim of this study was to explore the challenges and opportunities of using Facebook as a platform for qualitative health research in Danish women of reproductive age. Methods: This study was a qualitative study based on 3 online focus groups on Facebook with 26 Danish women of reproductive age discussing the timing of motherhood in January 2020. Results: Conducting online focus groups on Facebook was successful in this study as the web-based approach was found suitable for developing qualitative data with women of reproductive age and made recruitment easy and free of charge. All participants found participating in an online focus group to be a positive experience. More than half of the women participating in the online focus groups found it advantageous to meet on Facebook instead of meeting face-to-face. Conclusions: Conducting online focus groups on Facebook is a suitable method to access qualitative data from women of reproductive age. Participants were positive toward being a part of an online focus group. Online focus groups on social media have the potential to give women of reproductive age a voice in the debate of motherhood. %M 34057418 %R 10.2196/24108 %U https://formative.jmir.org/2021/5/e24108 %U https://doi.org/10.2196/24108 %U http://www.ncbi.nlm.nih.gov/pubmed/34057418 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 5 %P e24003 %T Patient Recruitment Into a Multicenter Clinical Cohort Linking Electronic Health Records From 5 Health Systems: Cross-sectional Analysis %A Bennett,Wendy L %A Bramante,Carolyn T %A Rothenberger,Scott D %A Kraschnewski,Jennifer L %A Herring,Sharon J %A Lent,Michelle R %A Clark,Jeanne M %A Conroy,Molly B %A Lehmann,Harold %A Cappella,Nickie %A Gauvey-Kern,Megan %A McCullough,Jody %A McTigue,Kathleen M %+ Johns Hopkins University School of Medicine, 2024 E Monument St, Rm 2-616, Baltimore, MD, 21205, United States, 1 4107465146, wendy.bennett@jhmi.edu %K electronic health record %K recruitment methods %K cohort study design %K recruitment %K health system %K bariatric %K surgery %K clinical research network %K primary care %K cohort %K enrollment %K research %K process %K efficiency %K eligibility %D 2021 %7 27.5.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: There is growing interest in identifying and recruiting research participants from health systems using electronic health records (EHRs). However, few studies have described the practical aspects of the recruitment process or compared electronic recruitment methods to in-person recruitment, particularly across health systems. Objective: The objective of this study was to describe the steps and efficiency of the recruitment process and participant characteristics by recruitment strategy. Methods: EHR-based eligibility criteria included being an adult patient engaged in outpatient primary or bariatric surgery care at one of 5 health systems in the PaTH Clinical Research Network and having ≥2 weight measurements and 1 height measurement recorded in their EHR within the last 5 years. Recruitment strategies varied by site and included one or more of the following methods: (1) in-person recruitment by study staff from clinical sites, (2) US postal mail recruitment letters, (3) secure email, and (4) direct EHR recruitment through secure patient web portals. We used descriptive statistics to evaluate participant characteristics and proportion of patients recruited (ie, efficiency) by modality. Results: The total number of eligible patients from the 5 health systems was 5,051,187. Of these, 40,048 (0.8%) were invited to enter an EHR-based cohort study and 1085 were enrolled. Recruitment efficiency was highest for in-person recruitment (33.5%), followed by electronic messaging (2.9%), including email (2.9%) and EHR patient portal messages (2.9%). Overall, 779 (65.7%) patients were enrolled through electronic messaging, which also showed greater rates of recruitment of Black patients compared with the other strategies. Conclusions: We recruited a total of 1085 patients from primary care and bariatric surgery settings using 4 recruitment strategies. The recruitment efficiency was 2.9% for email and EHR patient portals, with the majority of participants recruited electronically. This study can inform the design of future research studies using EHR-based recruitment. %M 34042604 %R 10.2196/24003 %U https://www.jmir.org/2021/5/e24003 %U https://doi.org/10.2196/24003 %U http://www.ncbi.nlm.nih.gov/pubmed/34042604 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 5 %P e24742 %T Capturing COVID-19–Like Symptoms at Scale Using Banner Ads on an Online News Platform: Pilot Survey Study %A Dixon,Brian E %A Mukherjee,Sumit %A Wiensch,Ashley %A Gray,Mary L %A Ferres,Juan M Lavista %A Grannis,Shaun J %+ Department of Epidemiology, Richard M Fairbanks School of Public Health, Indiana University, 1050 Wishard Boulevard, Floors 5 and 6, Indianapolis, IN, 46202, United States, 1 317 278 3072, bedixon@regenstrief.org %K COVID-19 %K coronavirus %K epidemiology %K research subject recruitment %K signs and symptoms %D 2021 %7 20.5.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Identifying new COVID-19 cases is challenging. Not every suspected case undergoes testing, because testing kits and other equipment are limited in many parts of the world. Yet populations increasingly use the internet to manage both home and work life during the pandemic, giving researchers mediated connections to millions of people sheltering in place. Objective: The goal of this study was to assess the feasibility of using an online news platform to recruit volunteers willing to report COVID-19–like symptoms and behaviors. Methods: An online epidemiologic survey captured COVID-19–related symptoms and behaviors from individuals recruited through banner ads offered through Microsoft News. Respondents indicated whether they were experiencing symptoms, whether they received COVID-19 testing, and whether they traveled outside of their local area. Results: A total of 87,322 respondents completed the survey across a 3-week span at the end of April 2020, with 54.3% of the responses from the United States and 32.0% from Japan. Of the total respondents, 19,631 (22.3%) reported at least one symptom associated with COVID-19. Nearly two-fifths of these respondents (39.1%) reported more than one COVID-19–like symptom. Individuals who reported being tested for COVID-19 were significantly more likely to report symptoms (47.7% vs 21.5%; P<.001). Symptom reporting rates positively correlated with per capita COVID-19 testing rates (R2=0.26; P<.001). Respondents were geographically diverse, with all states and most ZIP Codes represented. More than half of the respondents from both countries were older than 50 years of age. Conclusions: News platforms can be used to quickly recruit study participants, enabling collection of infectious disease symptoms at scale and with populations that are older than those found through social media platforms. Such platforms could enable epidemiologists and researchers to quickly assess trends in emerging infections potentially before at-risk populations present to clinics and hospitals for testing and/or treatment. %M 33872190 %R 10.2196/24742 %U https://www.jmir.org/2021/5/e24742 %U https://doi.org/10.2196/24742 %U http://www.ncbi.nlm.nih.gov/pubmed/33872190 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 5 %P e23499 %T Maximizing Participant Engagement, Participation, and Retention in Cohort Studies Using Digital Methods: Rapid Review to Inform the Next Generation of Very Large Birth Cohorts %A Nkyekyer,Joanna %A Clifford,Susan A %A Mensah,Fiona K %A Wang,Yichao %A Chiu,Lauren %A Wake,Melissa %+ Murdoch Children’s Research Institute, 50 Flemington Road, Parkville, VIC 3052, Australia, 61 3 9345 5937, melissa.wake@mcri.edu.au %K cohort studies %K communication modes %K digital study %K mobile phone %K participant engagement %K research methodology %K retention %K systematic reviews %D 2021 %7 14.5.2021 %9 Review %J J Med Internet Res %G English %X Background: Many current research needs can only be addressed using very large cohorts. In such studies, traditional one-on-one phone, face-to-face, or paper-based engagement may not be feasible. The only realistic mechanism for maintaining engagement and participation at this scale is via digital methods. Given the substantial investment being made into very large birth cohort studies, evidence for optimal methods of participant engagement, participation, and retention over sustained periods without in-person contact from researchers is paramount. Objective: This study aims to provide an overview of systematic reviews and meta-analyses evaluating alternative strategies for maximizing participant engagement and retention rates in large-scale studies using digital methods. Methods: We used a rapid review method by searching PubMed and Ovid MEDLINE databases from January 2012 to December 2019. Studies evaluating at least 1 e-engagement, participation, or retention strategy were eligible. Articles were screened for relevance based on preset inclusion and exclusion criteria. The methodological quality of the included reviews was assessed using the AMSTAR-2 (Assessing the Methodological Quality of Systematic Reviews 2) measurement tool, and a narrative synthesis of the data was conducted. Results: The literature search yielded 19 eligible reviews. Overall, 63% (n=12) of these reviews reported on the effectiveness of e-engagement or participation promotion strategies. These evaluations were generally not conducted within very large observational digital cohorts. Most of the contributing reviews included multipurpose cohort studies (with both observational and interventional elements) conducted in clinical and research settings. Email or SMS text message reminders, SMS text messages or voice notifications, and incentives were the most commonly used design features to engage and retain participants. For parental outcomes, engagement-facilitation interventions influenced uptake and behavior change, including video feedback, goal setting, and intensive human facilitation and support. Participant-stated preferences for content included new knowledge, reminders, solutions, and suggestions about health issues presented in a clear, short, and personalized way. Perinatal and postpartum women valued self-monitoring and personalized feedback. Digital reminders and multiple SMS text messages were specific strategies that were found to increase adherence to medication and clinic attendance, respectively. Conclusions: This review adds to the growing literature evaluating methods to optimize engagement and participation that may apply to large-scale studies using digital methods; it is promising that most e-engagement and participation promotion strategies appear to be effective. However, these reviews canvassed relatively few strategies, suggesting that few alternative strategies have been experimentally evaluated. The reviews also revealed a dearth of experimental evidence generated within very large observational digital cohort studies, which may reflect the small number of such studies worldwide. Thus, very large studies may need to proactively build in experimental opportunities to test engagement and retention approaches to enhance the success of their own and other large digital contact studies. %M 33988509 %R 10.2196/23499 %U https://www.jmir.org/2021/5/e23499 %U https://doi.org/10.2196/23499 %U http://www.ncbi.nlm.nih.gov/pubmed/33988509 %0 Journal Article %@ 2371-4379 %I JMIR Publications %V 6 %N 2 %P e26965 %T Stigma as a Barrier to Participant Recruitment of Minority Populations in Diabetes Research: Development of a Community-Centered Recruitment Approach %A Mitchell,Suzanne %A Bragg,Alexa %A Moldovan,Ioana %A Woods,Shakiyla %A Melo,Katherine %A Martin-Howard,Jessica %A Gardiner,Paula %+ Department of Family Medicine, Boston University School of Medicine, 771 Albany Street, Boston, MA, United States, 1 978 985 6033, suzanne.mitchell@bmc.org %K diabetes %K stigma %K research %K recruitment %K minority health %K disparities %K virtual health %K virtual management %D 2021 %7 3.5.2021 %9 Original Paper %J JMIR Diabetes %G English %X Background: The development of evidence-based care geared towards Black and Latina women living with uncontrolled type 2 diabetes is contingent upon their active recruitment into clinical interventions. Well-documented impediments to recruitment include a historical mistrust of the research community and socioeconomic factors that limit awareness and access to research studies. Although sociocultural and socioeconomic factors deter minorities from participating in clinical research, it is equally important to consider the role of stigma in chronic disease intervention studies. Objective: We aim to share our discovery of diabetes-related stigma as an underrecognized impediment to recruitment for the Women in Control 2.0 virtual diabetes self-management education study. Methods: Our initial recruitment plan used traditional strategies to recruit minority women with uncontrolled type 2 diabetes, which included letters and phone calls to targeted patients, referrals from clinicians, and posted flyers. After engaging a patient advisory group and consulting with experts in community advocacy, diabetes-related stigma emerged as a prominent barrier to recruitment. The study team reviewed and revised recruitment scripts and outreach material in order to better align with the lived experience and needs of potential enrollees. Results: Using a more nuanced, community-centered recruitment approach, we achieved our target recruitment goal, enrolling 309 participants into the study, exceeding our target of 212. Conclusions: There is a need for updated recruitment methods that can increase research participation of patients who experience internalized diabetes stigma. To address disparities in minority health, further research is needed to better understand diabetes-related stigma and devise strategies to avert or address it. %M 33938811 %R 10.2196/26965 %U https://diabetes.jmir.org/2021/2/e26965 %U https://doi.org/10.2196/26965 %U http://www.ncbi.nlm.nih.gov/pubmed/33938811 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 4 %P e25299 %T Conducting Internet-Based Visits for Onboarding Populations With Limited Digital Literacy to an mHealth Intervention: Development of a Patient-Centered Approach %A Hernandez-Ramos,Rosa %A Aguilera,Adrian %A Garcia,Faviola %A Miramontes-Gomez,Jose %A Pathak,Laura Elizabeth %A Figueroa,Caroline Astrid %A Lyles,Courtney Rees %+ Division of General Internal Medicine, Zuckerberg San Francisco General Hospital, University of California, San Francisco, 1001 Potrero Ave, Bldg 10, Ward 13, Box 1364, San Francisco, CA, 94110, United States, 1 628 206 6483, courtney.Lyles@ucsf.edu %K digital literacy %K digital divide %K underserved %K patient-centered %K digital health %K mhealth %K intervention %K telehealth %K COVID-19 %D 2021 %7 29.4.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: The COVID-19 pandemic has propelled patient-facing research to shift to digital and telehealth strategies. If these strategies are not adapted for minority patients of lower socioeconomic status, health inequality will further increase. Patient-centered models of care can successfully improve access and experience for minority patients. Objective: This study aims to present the development process and preliminary acceptability of altering in-person onboarding procedures into internet-based, remote procedures for a mobile health (mHealth) intervention in a population with limited digital literacy. Methods: We actively recruited safety-net patients (English- and Spanish-speaking adults with diabetes and depression who were receiving care at a public health care delivery system in San Francisco, United States) into a randomized controlled trial of text messaging support for physical activity. Because of the COVID-19 pandemic, we modified the in-person recruitment and onboarding procedures to internet-based, remote processes with human support. We conducted a preliminary evaluation of how the composition of the recruited cohort might have changed from the pre–COVID-19 period to the COVID-19 enrollment period. First, we analyzed the digital profiles of patients (n=32) who had participated in previous in-person onboarding sessions prior to the COVID-19 pandemic. Next, we documented all changes made to our onboarding processes to account for remote recruitment, especially those needed to support patients who were not very familiar with downloading apps onto their mobile phones on their own. Finally, we used the new study procedures to recruit patients (n=11) during the COVID-19 social distancing period. These patients were also asked about their experience enrolling into a fully digitized mHealth intervention. Results: Recruitment across both pre–COVID-19 and COVID-19 periods (N=43) demonstrated relatively high rates of smartphone ownership but lower self-reported digital literacy, with 32.6% (14/43) of all patients reporting they needed help with using their smartphone and installing apps. Significant changes were made to the onboarding procedures, including facilitating app download via Zoom video call and/or a standard phone call and implementing brief, one-on-one staff-patient interactions to provide technical assistance personalized to each patient’s digital literacy skills. Comparing recruitment during pre–COVID-19 and COVID-19 periods, the proportion of patients with digital literacy barriers reduced from 34.4% (11/32) in the pre–COVID-19 cohort to 27.3% (3/11) in the COVID-19 cohort. Differences in digital literacy scores between both cohorts were not significant (P=.49). Conclusions: Patients of lower socioeconomic status have high interest in using digital platforms to manage their health, but they may require additional upfront human support to gain access. One-on-one staff-patient partnerships allowed us to provide unique technical assistance personalized to each patient’s digital literacy skills, with simple strategies to troubleshoot patient barriers upfront. These additional remote onboarding strategies can mitigate but not eliminate digital barriers for patients without extensive technology experience. Trial Registration: Clinicaltrials.gov NCT0349025, https://clinicaltrials.gov/ct2/show/NCT03490253 %M 33872184 %R 10.2196/25299 %U https://formative.jmir.org/2021/4/e25299 %U https://doi.org/10.2196/25299 %U http://www.ncbi.nlm.nih.gov/pubmed/33872184 %0 Journal Article %@ 2561-6722 %I JMIR Publications %V 4 %N 2 %P e16280 %T Leveraging Digital Technology in Conducting Longitudinal Research on Mental Health in Pregnancy: Longitudinal Panel Survey Study %A McGee,Beth %A Leonte,Marie %A Wildenhaus,Kevin %A Wilcox,Marsha %A Reps,Jenna %A LaCross,Lauren %+ BabyCenter, LLC, 163 Freelon St, San Francisco, CA, 94107, United States, 1 415 237 9990, bethannmcgee@gmail.com %K digital %K longitudinal %K pregnancy %K postpartum %K perinatal %K panel %K study design %K mental health %D 2021 %7 27.4.2021 %9 Original Paper %J JMIR Pediatr Parent %G English %X Background: Collecting longitudinal data during and shortly after pregnancy is difficult, as pregnant women often avoid studies with repeated surveys. In contrast, pregnant women interact with certain websites at multiple stages throughout pregnancy and the postpartum period. This digital connection presents the opportunity to use a website as a way to recruit and enroll pregnant women into a panel study and collect valuable longitudinal data for research. These data can then be used to learn new scientific insights and improve health care. Objective: The objective of this paper is to describe the approaches applied and lessons learned from designing and conducting an online panel for health care research, specifically perinatal mood disorders. Our panel design and approach aimed to recruit a large sample (N=1200) of pregnant women representative of the US population and to minimize attrition over time. Methods: We designed an online panel to enroll participants from the pregnancy and parenting website BabyCenter. We enrolled women into the panel from weeks 4 to 10 of pregnancy (Panel 1) or from weeks 28 to 33 of pregnancy (Panel 2) and administered repeated psychometric assessments from enrollment through 3 months postpartum. We employed a combination of adaptive digital strategies to recruit, communicate with, and build trust with participants to minimize attrition over time. We were transparent at baseline about expectations, used monetary and information-based incentives, and sent personalized reminders to reduce attrition. The approach was participant-centric and leveraged many aspects of flexibility that digital methods afford. Results: We recruited 1179 pregnant women—our target was 1200—during a 26-day period between August 25 and September 19, 2016. Our strategy to recruit participants using adaptive sampling tactics resulted in a large panel that was similar to the US population of pregnant women. Attrition was on par with existing longitudinal observational studies in pregnant populations, and 79.2% (934/1179) of our panel completed another survey after enrollment. There were 736 out of 1179 (62.4%) women who completed at least one assessment in both the prenatal and postnatal periods, and 709 out of 1179 (60.1%) women who completed the final assessment. To validate the data, we compared participation rates and factors of perinatal mood disorders ascertained from this study with prior research, suggesting reliability of our approach. Conclusions: A suitably designed online panel created in partnership with a digital media source that reaches the target audience is a means to leverage a conveniently sized and viable sample for scientific research. Our key lessons learned are as follows: sampling tactics may need to be adjusted to enroll a representative sample, attrition can be reduced by adapting to participants’ needs, and study engagement can be boosted by personalizing interactions with the flexibility afforded by digital technologies. %M 33904826 %R 10.2196/16280 %U https://pediatrics.jmir.org/2021/2/e16280 %U https://doi.org/10.2196/16280 %U http://www.ncbi.nlm.nih.gov/pubmed/33904826 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 10 %N 4 %P e29152 %T Digital Epidemiologic Research on Multilevel Risks for HIV Acquisition and Other Health Outcomes Among Transgender Women in Eastern and Southern United States: Protocol for an Online Cohort %A Wirtz,Andrea L %A Cooney,Erin E %A Stevenson,Megan %A Radix,Asa %A Poteat,Tonia %A Wawrzyniak,Andrew J %A Cannon,Christopher M %A Schneider,Jason S %A Haw,J Sonya %A Case,James %A Althoff,Keri N %A Humes,Elizabeth %A Mayer,Kenneth H %A Beyrer,Chris %A Rodriguez,Allan E %A Reisner,Sari L %A , %+ Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, 615 N Wolfe St, W3505, Baltimore, MD, 21205-4803, United States, 1 4105020800, awirtz1@jhu.edu %K transgender persons %K United States %K cohort studies %K digital research %K HIV infection %K HIV testing %K public health %K online health %K transgender %K HIV %D 2021 %7 26.4.2021 %9 Original Paper %J JMIR Res Protoc %G English %X Background: The HIV epidemic disproportionately impacts transgender women in the United States. Cohort studies identify unique risks for affected populations, but use of facility-based methods may bias findings towards individuals living in research catchment areas, more engaged in health services, or, in the case of transgender populations, those who are open about their transgender identity. Digital clinical trials and other online research methods are increasingly common, providing opportunity to reach those not commonly engaged in research. Simultaneously, there is a need to understand potential biases associated with digital research, how these methods perform, and whether they are accepted across populations. Objective: This study aims to assess the feasibility of developing and implementing an online cohort of transgender women to assess risks for HIV acquisition and other health experiences. Further, this study aims to evaluate how an online cohort compares to a site-based, technology-enhanced cohort for epidemiologic research. The overarching goal is to estimate incidence of HIV and other health outcomes among transgender women in eastern and southern United States. Methods: This substudy is part of a larger multisite prospective cohort (LITE) conducted among transgender women, which also includes a site-based, technology-enhanced cohort in 6 eastern and southern US cities. The online cohort was launched to enroll and follow participants across 72 cities in the same region and with similar demographic characteristics as the site-based cohort. Participants are followed for 24 months. Adult transgender women are recruited via convenience sampling (eg, peer referrals, social media, and dating apps). Participants reporting negative or unknown HIV status are enrolled in a baseline study visit, complete a sociobehavioral survey, and provide oral fluid specimens to test for HIV. Participants not living with HIV (lab-confirmed) at baseline are offered enrollment into the cohort; follow-up assessments occur every 6 months. Results: Enrollment into the online cohort launched in January 2019. Active recruitment stopped in May 2019, and enrollment officially closed in August 2020. A total of 580 participants enrolled into and are followed in the cohort. A recruitment-enrollment cascade was observed across screening, consent, and completion of study activities. Implementation experiences with HIV test kits highlight the need for heavy staff engagement to support participant engagement, visit completion, and retention, even with automated digital procedures. Conclusions: This study is responsive to increasing research interest in digital observational and intervention research, particularly for populations who are most affected by the HIV epidemic and for those who may otherwise not participate in person. The progression across stages of the recruitment-enrollment cascade provides useful insight for implementation of cohort studies in the online environment. International Registered Report Identifier (IRRID): DERR1-10.2196/29152 %M 33900202 %R 10.2196/29152 %U https://www.researchprotocols.org/2021/4/e29152 %U https://doi.org/10.2196/29152 %U http://www.ncbi.nlm.nih.gov/pubmed/33900202 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 4 %P e24716 %T Multimodal Recruitment to Study Ovulation and Menstruation Health: Internet-Based Survey Pilot Study %A Mahalingaiah,Shruthi %A Cheng,J Jojo %A Winter,Michael R %A Rodriguez,Erika %A Fruh,Victoria %A Williams,Anna %A Nguyen,MyMy %A Madhavan,Rashmi %A Karanja,Pascaline %A MacRae,Jill %A Konanki,Sai Charan %A Lane,Kevin J %A Aschengrau,Ann %+ Department of Environmental Health, Harvard T.H. Chan School of Public Health, 665 Huntington Avenue, Building 1, Floor 14, Boston, MA, 02115, United States, 1 6174324381, shruthi@hsph.harvard.edu %K polycystic ovary syndrome %K PCOS %K menstrual cycle %K multimodal recruitment strategy %K epidemiology %K recruitment %K pilot %K strategy %K women %K feasibility %K online survey %K ovulation %K menstrual %D 2021 %7 16.4.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Multimodal recruitment strategies are a novel way to increase diversity in research populations. However, these methods have not been previously applied to understanding the prevalence of menstrual disorders such as polycystic ovary syndrome. Objective: The purpose of this study was to test the feasibility of recruiting a diverse cohort to complete a web-based survey on ovulation and menstruation health. Methods: We conducted the Ovulation and Menstruation Health Pilot Study using a REDCap web-based survey platform. We recruited 200 women from a clinical population, a community fair, and the internet. Results: We recruited 438 women over 29 weeks between September 2017 and March 2018. After consent and eligibility determination, 345 enrolled, 278 started (clinic: n=43; community fair: n=61; internet: n=174), and 247 completed (clinic: n=28; community fair: n=60; internet: n=159) the survey. Among all participants, the median age was 25.0 (SD 6.0) years, mean BMI was 26.1 kg/m2 (SD 6.6), 79.7% (216/271) had a college degree or higher, and 14.6% (37/254) reported a physician diagnosis of polycystic ovary syndrome. Race and ethnicity distributions were 64.7% (176/272) White, 11.8% (32/272) Black/African American, 7.7% (21/272) Latina/Hispanic, and 5.9% (16/272) Asian individuals; 9.9% (27/272) reported more than one race or ethnicity. The highest enrollment of Black/African American individuals was in clinic (17/42, 40.5%) compared to 1.6% (1/61) in the community fair and 8.3% (14/169) using the internet. Survey completion rates were highest among those who were recruited from the internet (159/174, 91.4%) and community fairs (60/61, 98.4%) compared to those recruited in clinic (28/43, 65.1%). Conclusions: Multimodal recruitment achieved target recruitment in a short time period and established a racially diverse cohort to study ovulation and menstruation health. There were greater enrollment and completion rates among those recruited via the internet and community fair. %M 33861203 %R 10.2196/24716 %U https://www.jmir.org/2021/4/e24716 %U https://doi.org/10.2196/24716 %U http://www.ncbi.nlm.nih.gov/pubmed/33861203 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 4 %P e19022 %T Facebook Ads Manager as a Recruitment Tool for a Health and Safety Survey of Farm Mothers: Pilot Study %A Burke,Richard R %A Weichelt,Bryan P %A Namkoong,Kang %+ National Farm Medicine Center, Marshfield Clinic Research Institute, 1000 N Oak Avenue, Marshfield, WI, 54449, United States, 1 715 389 3789, burke.richard@marshfieldresearch.org %K Facebook %K recruitment %K advertisement %K agriculture %K health %K safety %K survey %K online %D 2021 %7 7.4.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Social media platforms have experienced unprecedented levels of growth and usage over the past decade, with Facebook hosting 2.7 billion active users worldwide, including over 200 million users in the United States. Facebook users have been underutilized and understudied by the academic community as a resource for participant recruitment. Objective: We performed a pilot study to explore the efficacy and cost-effectiveness of Facebook advertisements for the recruitment of an online agricultural health and safety survey. Methods: We undertook a 1-week advertising campaign utilizing the integrated, targeted advertising platform of Facebook Ads Manager with a target-spending limit of US $294. We created and posted three advertisements depicting varying levels of agricultural safety adoption leading to a brief survey on farm demographics and safety attitudes. We targeted our advertisements toward farm mothers aged 21-50 years in the United States and determined cost-effectiveness and potential biases. No participant incentive was offered. Results: We reached 40,024 users and gathered 318 advertisement clicks. Twenty-nine participants consented to the survey with 24 completions. Including personnel costs, the cost per completed survey was US $17.42. Compared to the distribution of female producers in the United States, our advertisements were unexpectedly overrepresented in the eastern United States and were underrepresented in the western United States. Conclusions: Facebook Ads Manager represents a potentially cost-effective and timely method to recruit participants for online health and safety research when targeting a specific population. However, social media recruitment mirrors traditional recruitment methods in its limitations, exhibiting geographic, response, and self-selection biases that need to be addressed. %M 33825686 %R 10.2196/19022 %U https://formative.jmir.org/2021/4/e19022 %U https://doi.org/10.2196/19022 %U http://www.ncbi.nlm.nih.gov/pubmed/33825686 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e25208 %T Comparative Success of Recruitment Strategies for an Exercise Intervention Trial Among Women With Polycystic Ovary Syndrome: Observational Study %A Benham,Jamie L %A Booth,Jane E %A Friedenreich,Christine M %A Rabi,Doreen M %A Sigal,Ronald J %+ Department of Medicine, Cumming School of Medicine, University of Calgary, Richmond Road Diagnostic and Treatment Centre, Room 1898, 1820 Richmond Road SW, Calgary, AB, T2T 5C7, Canada, 1 403 955 8327, rsigal@ucalgary.ca %K aerobic exercise %K exercise %K exercise training %K ovary %K polycystic ovary syndrome %K recruitment %K well-being %K women’s health %D 2021 %7 30.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Effective and efficient participant recruitment is a key determinant of the success of a research program. Previously reported recruitment strategies have displayed variable success rates in studies on women with polycystic ovary syndrome (PCOS). Objective: This study aimed to evaluate the effectiveness and cost per participant of the recruitment strategies that we used in a prospective randomized controlled trial to examine the effects of exercise training among inactive women with PCOS, who are aged 18-40 years. Methods: The 4 recruitment methods we used were as follows: (1) referral by health care providers or by word of mouth, (2) media (eg, local newspaper stories and radio interviews), (3) Facebook advertisements, and (4) unpaid advertisements including posters and websites. The proportions of potential, eligible, and enrolled participants recruited with each method were determined and compared using tests of proportion. The time investment and cost per participant enrolled were calculated for each recruitment strategy. Results: Of 200 potential participants screened, 98 (49%) were recruited from unpaid advertisements (posters and websites), 70 (35%) from Facebook advertisements, 16 (8%) by referral, and 16 (8%) from traditional media (newspaper and radio). Every potential participant was recruited from separate means (ie, no participant was approached through more than one recruitment method). A total of 109 (54.5%) women were deemed eligible for participation in the trial, and 60 (30.0%) were enrolled. The proportion of potential participants who completed the trial was higher for those recruited from traditional media than from Facebook advertisements (n=7/16, 44% vs n=13/70, 19%, respectively; P=.03) or unpaid advertisements (n=7/16, 44% vs n=13/98, 13%, respectively; P=.002). The cost per participant was Can $18.21 (US $14.46) for Facebook advertisements and Can $43.88 (US $34.85) for unpaid advertisements. There were no direct trial costs for referrals or traditional media. Conclusions: For this trial, each method was important for recruiting inactive women with PCOS because no participant reported learning about the trial through more than one method. Unpaid advertisements and Facebook advertisements helped recruit the largest number of participants in the trial, the former resulting in a higher cost per participant than the latter. Trial Registration: ClinicalTrials.gov NCT03362918; https://clinicaltrials.gov/ct2/show/NCT03362918 %M 33783363 %R 10.2196/25208 %U https://www.jmir.org/2021/3/e25208 %U https://doi.org/10.2196/25208 %U http://www.ncbi.nlm.nih.gov/pubmed/33783363 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 23 %N 3 %P e25031 %T Mobile HIV Testing Through Social Networking Platforms: Comparative Study %A Chiou,Piao-Yi %A Ko,Nai-Ying %A Chien,Chien-Yu %+ School of Nursing, College of Medicine, National Taiwan University, No 2-1, Xuzhou Road, Zhongzheng District, Taipei City, 100, Taiwan, 886 2 23123456 ext 88427, purechiou2@gmail.com %K HIV testing %K internet-based intervention %K men who have sex with men %K mobile apps %K mobile phone %K risk-taking %K social networking %K voluntary counseling and testing %D 2021 %7 26.3.2021 %9 Original Paper %J J Med Internet Res %G English %X Background: Improving HIV screening in key populations is a crucial strategy to achieve the goal of eliminating AIDS in 2030. Social networking platforms can be used to recruit high risk-taking men who have sex with men (MSM) to promote the delivery of voluntary counseling and testing (VCT) as mobile HIV testing. Therefore, client recruitment and availability of mobile HIV testing through social networking platforms requires further evaluation. Objective: The aim of this study is to compare the effects of targeting high risk-taking MSM and HIV case finding between two mobile HIV testing recruitment approaches: through the traditional website-based approach and through social networking platforms. Methods: A comparative study design and propensity score matching was applied. The traditional VCT model, that is, the control group, recruited MSM through a website, and a trained research assistant visited the walk-in testing station at a gay village on Friday and Saturday nights. The social networking VCT model, the experimental group, recruited MSM from social networking platforms by periodically reloading into and conducting web-based discussions on dating apps and Facebook. The participants then referred to others in their social networks via a popular messenger app in Taiwan. The test was conducted at a designated time and place during weekdays by a trained research assistant. Across both modes of contact, before the mobile HIV testing, participants needed to provide demographic characteristics and respond to a questionnaire about HIV risk-taking behaviors. Results: We recruited 831 MSM over 6 months, with a completion rate of 8.56% (616/7200) in the traditional VCT model and 20.71% (215/1038) in the social networking VCT model. After propensity score matching, there were 215 MSM in each group (mean age 29.97, SD 7.61 years). The social networking model was more likely to reach MSM with HIV risk-taking behaviors, that is, those seeking sexual activity through social media, having multiple sexual partners and unprotected anal intercourse, having experience of recreational drug use, and never having or not regularly having an HIV test, compared with the traditional model. HIV positive rates (incidence rate ratio 3.40, 95% CI 1.089-10.584; P=.03) and clinic referral rates (incidence rate ratio 0.03, 95% CI 0.001-0.585; P=.006) were significantly higher among those in the social networking VCT model than in the traditional VCT model. Conclusions: Through effective recruitment strategies on social networking platforms, the social networking VCT mode can be smoothly promoted, as compared with the traditional VCT model, to target high risk-taking MSM and increase testing outcomes. %M 33769298 %R 10.2196/25031 %U https://www.jmir.org/2021/3/e25031 %U https://doi.org/10.2196/25031 %U http://www.ncbi.nlm.nih.gov/pubmed/33769298 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 9 %N 3 %P e27767 %T Accuracy of an Artificial Intelligence System for Cancer Clinical Trial Eligibility Screening: Retrospective Pilot Study %A Haddad,Tufia %A Helgeson,Jane M %A Pomerleau,Katharine E %A Preininger,Anita M %A Roebuck,M Christopher %A Dankwa-Mullan,Irene %A Jackson,Gretchen Purcell %A Goetz,Matthew P %+ Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, United States, 1 507 284 3731, haddad.tufia@mayo.edu %K clinical trial matching %K clinical decision support system %K machine learning %K artificial intelligence %K screening %K clinical trials %K eligibility %K breast cancer %D 2021 %7 26.3.2021 %9 Original Paper %J JMIR Med Inform %G English %X Background: Screening patients for eligibility for clinical trials is labor intensive. It requires abstraction of data elements from multiple components of the longitudinal health record and matching them to inclusion and exclusion criteria for each trial. Artificial intelligence (AI) systems have been developed to improve the efficiency and accuracy of this process. Objective: This study aims to evaluate the ability of an AI clinical decision support system (CDSS) to identify eligible patients for a set of clinical trials. Methods: This study included the deidentified data from a cohort of patients with breast cancer seen at the medical oncology clinic of an academic medical center between May and July 2017 and assessed patient eligibility for 4 breast cancer clinical trials. CDSS eligibility screening performance was validated against manual screening. Accuracy, sensitivity, specificity, positive predictive value, and negative predictive value for eligibility determinations were calculated. Disagreements between manual screeners and the CDSS were examined to identify sources of discrepancies. Interrater reliability between manual reviewers was analyzed using Cohen (pairwise) and Fleiss (three-way) κ, and the significance of differences was determined by Wilcoxon signed-rank test. Results: In total, 318 patients with breast cancer were included. Interrater reliability for manual screening ranged from 0.60-0.77, indicating substantial agreement. The overall accuracy of breast cancer trial eligibility determinations by the CDSS was 87.6%. CDSS sensitivity was 81.1% and specificity was 89%. Conclusions: The AI CDSS in this study demonstrated accuracy, sensitivity, and specificity of greater than 80% in determining the eligibility of patients for breast cancer clinical trials. CDSSs can accurately exclude ineligible patients for clinical trials and offer the potential to increase screening efficiency and accuracy. Additional research is needed to explore whether increased efficiency in screening and trial matching translates to improvements in trial enrollment, accruals, feasibility assessments, and cost. %M 33769304 %R 10.2196/27767 %U https://medinform.jmir.org/2021/3/e27767 %U https://doi.org/10.2196/27767 %U http://www.ncbi.nlm.nih.gov/pubmed/33769304 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 3 %P e18591 %T Recruitment and Retention Strategies for Community-Based Longitudinal Studies in Diverse Urban Neighborhoods %A Ferris,Emily B %A Wyka,Katarzyna %A Evenson,Kelly R %A Dorn,Joan M %A Thorpe,Lorna %A Catellier,Diane %A Huang,Terry T-K %+ Center for Systems and Community Design, Graduate School of Public Health and Health Policy, City University of New York, 55 W 125th St Room 80, New York, NY, 10027, United States, 1 646 364 0247, terry.huang@sph.cuny.edu %K community-based %K participant engagement %K natural experiment %K built environment intervention %K health disparities %K study adaptations %D 2021 %7 24.3.2021 %9 Viewpoint %J JMIR Form Res %G English %X Longitudinal, natural experiments provide an ideal evaluation approach to better understand the impact of built environment interventions on community health outcomes, particularly health disparities. As there are many participant engagement challenges inherent in the design of large-scale community-based studies, adaptive and iterative participant engagement strategies are critical. This paper shares practical lessons learned from the Physical Activity and Redesigned Community Spaces (PARCS) study, which is an evaluation of the impact of a citywide park renovation initiative on physical activity, psychosocial health, and community well-being. The PARCS study, although ongoing, has developed several approaches to improve participant engagement: building trust with communities, adapting the study protocol to meet participants’ needs and to reflect their capacity for participation, operational flexibility, and developing tracking systems. These strategies may help researchers anticipate and respond to participant engagement challenges in community-based studies, particularly in low-income communities of color. %M 33759799 %R 10.2196/18591 %U https://formative.jmir.org/2021/3/e18591 %U https://doi.org/10.2196/18591 %U http://www.ncbi.nlm.nih.gov/pubmed/33759799 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 9 %N 3 %P e23058 %T Motivation to Participate in Precision Health Research and Acceptability of Texting as a Recruitment and Intervention Strategy Among Vietnamese Americans: Qualitative Study %A Ta Park,Van %A Kim,Amber %A Cho,In Hyang %A Nam,Bora %A Nguyen,Khue %A Vuong,Quyen %A Periyakoil,Vyjeyanthi S %A Hong,Y Alicia %+ Department of Community Health Systems, School of Nursing, University of California, San Francisco, 2 Koret Way, N511S, San Francisco, CA, 94143, United States, 1 415 514 3318, van.park@ucsf.edu %K Vietnamese Americans %K texting %K precision health %K qualitative research %K mobile phone %D 2021 %7 11.3.2021 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: The largest effort undertaken in precision health research is the Precision Medicine Initiative (PMI), also known as the All of Us Research Program, which aims to include 1 million or more participants to be a part of a diverse database that can help revolutionize precision health research studies. Research participation from Asian Americans and Pacific Islanders in precision health research is, however, limited; this includes Vietnamese Americans, especially those with limited English proficiency. PMI engagement efforts with underserved communities, including members of minority populations or individuals who have experienced health disparities such as Vietnamese Americans with limited English proficiency, may help to enrich the diversity of the PMI. Objective: The aim of this study is to examine the attitudes towards and perceptions of precision health, motivations and barriers to participation in precision health research, and acceptability of SMS text messaging as a recruitment and intervention strategy among underserved Vietnamese Americans. Methods: A community sample of 37 Vietnamese Americans completed a survey and participated in one of 3 focus groups classified by age (18-30, 31-59, and ≥60 years) on topics related to precision health, participation in precision health research, texting or social media use experience, and insights on how to use text messages for recruitment and intervention. Participants were recruited via community organizations that serve Vietnamese Americans, flyers, word of mouth, and Vietnamese language radio announcements. Results: Most participants had little knowledge of precision health initially. After brief education, they had positive attitudes toward precision health, although the motivation to participate in precision health research varied by age and prior experience of research participation. The main motivators to participate included the desire for more knowledge and more representation of Vietnamese Americans in research. Participants were open to receiving text messages as part of their research participation and provided specific suggestions on the design and delivery of such messages (eg, simple, in both English and Vietnamese). Examples of barriers included misinterpretation of messages, cost (to send text messages), and preferences for different texting platforms across age groups. Conclusions: This study represents one of the first formative research studies to recruit underserved Vietnamese Americans to precision health research. It is critical to understand target communities’ motivations and barriers to participation in research. Delivering culturally appropriate text messages via age-appropriate texting and social media platforms may be an effective recruitment and intervention strategy. The next step is to develop and examine the feasibility of a culturally tailored precision health texting strategy for Vietnamese Americans. %M 33704080 %R 10.2196/23058 %U https://mhealth.jmir.org/2021/3/e23058 %U https://doi.org/10.2196/23058 %U http://www.ncbi.nlm.nih.gov/pubmed/33704080 %0 Journal Article %@ 2292-9495 %I JMIR Publications %V 8 %N 1 %P e24055 %T Perspectives of Trial Staff on the Barriers to Recruitment in a Digital Intervention for Psychosis and How to Work Around Them: Qualitative Study Within a Trial %A Allan,Stephanie %A Mcleod,Hamish %A Bradstreet,Simon %A Bell,Imogen %A Whitehill,Helen %A Wilson-Kay,Alison %A Clark,Andrea %A Matrunola,Claire %A Morton,Emma %A Farhall,John %A Gleeson,John %A Gumley,Andrew %+ University of Glasgow, Glasgow Mental Health Research Facility, Glasgow, G20 0XA, United Kingdom, 44 01412113939, stephanie.allan@glasgow.ac.uk %K recruitment %K schizophrenia %K mHealth %K psychosis %K mental health %D 2021 %7 5.3.2021 %9 Original Paper %J JMIR Hum Factors %G English %X Background: Recruitment processes for clinical trials of digital interventions for psychosis are seldom described in detail in the literature. Although trial staff have expertise in describing barriers to and facilitators of recruitment, a specific focus on understanding recruitment from the point of view of trial staff is rare, and because trial staff are responsible for meeting recruitment targets, a lack of research on their point of view is a key limitation. Objective: The primary aim of this study was to understand recruitment from the point of view of trial staff and discover what they consider important. Methods: We applied pluralistic ethnographic methods, including analysis of trial documents, observation, and focus groups, and explored the recruitment processes of the EMPOWER (Early Signs Monitoring to Prevent Relapse in Psychosis and Promote Well-being, Engagement, and Recovery) feasibility trial, which is a digital app–based intervention for people diagnosed with schizophrenia. Results: Recruitment barriers were categorized into 2 main themes: service characteristics (lack of time available for mental health staff to support recruitment, staff turnover, patient turnover [within Australia only], management styles of community mental health teams, and physical environment) and clinician expectations (filtering effects and resistance to research participation). Trial staff negotiated these barriers through strategies such as emotional labor (trial staff managing feelings and expressions to successfully recruit participants) and trying to build relationships with clinical staff working within community mental health teams. Conclusions: Researchers in clinical trials for digital psychosis interventions face numerous recruitment barriers and do their best to work flexibly and to negotiate these barriers and meet recruitment targets. The recruitment process appeared to be enhanced by trial staff supporting each other throughout the recruitment stage of the trial. %M 33666555 %R 10.2196/24055 %U https://humanfactors.jmir.org/2021/1/e24055 %U https://doi.org/10.2196/24055 %U http://www.ncbi.nlm.nih.gov/pubmed/33666555 %0 Journal Article %@ 2291-5222 %I JMIR Publications %V 9 %N 3 %P e22732 %T Text Messaging and Web-Based Survey System to Recruit Patients With Low Back Pain and Collect Outcomes in the Emergency Department: Observational Study %A Amorim,Anita Barros %A Coombs,Danielle %A Richards,Bethan %A Maher,Chris G %A Machado,Gustavo C %+ Discipline of Physiotherapy, Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Level 7 East, Susan Wakil Health Building D18, Camperdown, Sydney, 2006, Australia, 61 0401399572, anita.amorim@sydney.edu.au %K emergency department %K clinical trial %K low back pain %K acute pain %K data collection %K patient recruitment %K short message service %K patient reported outcome measures %K mobile phone %D 2021 %7 4.3.2021 %9 Original Paper %J JMIR Mhealth Uhealth %G English %X Background: Low back pain (LBP) is a frequent reason for emergency department (ED) presentations, with a global prevalence of 4.4%. Despite being common, the number of clinical trials investigating LBP in the ED is low. Recruitment of patients in EDs can be challenging because of the fast-paced and demanding ED environment. Objective: The aim of this study is to describe the recruitment and response rates using an SMS text messaging and web-based survey system supplemented by telephone calls to recruit patients with LBP and collect health outcomes in the ED. Methods: An automated SMS text messaging system was integrated into Research Electronic Data Capture and used to collect patient-reported outcomes for an implementation trial in Sydney, Australia. We invited patients with nonserious LBP who presented to participating EDs at 1, 2, and 4 weeks after ED discharge. Patients who did not respond to the initial SMS text message invitation were sent a reminder SMS text message or contacted via telephone. The recruitment rate was measured as the proportion of patients who agreed to participate, and the response rate was measured as the proportion of participants completing the follow-up surveys at weeks 2 and 4. Regression analyses were used to explore factors associated with response rates. Results: In total, 807 patients with nonserious LBP were invited to participate and 425 (53.0%) agreed to participate. The week 1 survey was completed by 51.5% (416/807) of participants. At week 2, the response rate was 86.5% (360/416), and at week 4, it was 84.4% (351/416). Overall, 60% of the surveys were completed via SMS text messaging and on the web and 40% were completed via telephone. Younger participants and those from less socioeconomically disadvantaged areas were more likely to respond to the survey via the SMS text messaging and web-based system. Conclusions: Using an SMS text messaging and web-based survey system supplemented by telephone calls is a viable method for recruiting patients with LBP and collecting health outcomes in the ED. This hybrid system could potentially reduce the costs of using traditional recruitment and data collection methods (eg, face-to-face, telephone calls only). International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2017-019052 %M 33661125 %R 10.2196/22732 %U https://mhealth.jmir.org/2021/3/e22732 %U https://doi.org/10.2196/22732 %U http://www.ncbi.nlm.nih.gov/pubmed/33661125 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 2 %P e22854 %T Comparison of Facebook, Google Ads, and Reddit for the Recruitment of People Who Considered but Did Not Obtain Abortion Care in the United States: Cross-sectional Survey %A Moseson,Heidi %A Wollum,Alexandra %A Seymour,Jane W %A Zuniga,Carmela %A Thompson,Terri-Ann %A Gerdts,Caitlin %+ Ibis Reproductive Health, 1736 Franklin Street, Suite 600, Oakland, CA, 94612, United States, 1 5108222696, hmoseson@gmail.com %K abortion, induced %K abortion seekers %K abortion surveys %K bias, selection %K pregnancy, unplanned %K research subject recruitment %K reproductive health %K social media %K social stigma %D 2021 %7 24.2.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: In the United States, abortion access is restricted by numerous logistical, financial, social, and policy barriers. Most studies on abortion-seeking experiences in the United States have recruited participants from abortion clinics. However, clinic-based recruitment strategies fail to capture the experiences of people who consider an abortion but do not make it to an abortion clinic. Research indicates that many people search for abortion information on the web; however, web-based recruitment remains underutilized in abortion research. Objective: This study aims to establish the feasibility of using Facebook, Google Ads, and Reddit as recruitment platforms for a study on abortion-seeking experiences in the United States. Methods: From August to September 2018, we posted recruitment advertisements for a survey about abortion-seeking experiences through Facebook, Google Ads, and Reddit. Eligible participants were US residents aged 15-49 years who had been pregnant in the past 5 years and had considered abortion for a pregnancy in this period but did not abort. For each platform, we recorded staff time to develop advertisements and manage recruitment, as well as costs related to advertisement buys and social marketing firm support. We summarized the number of views and clicks for each advertisement where possible, and we calculated metrics related to cost per recruited participant and recruitment rate by week for each platform. We assessed differences across platforms using the chi-square and Kruskal-Wallis tests. Results: Overall, study advertisements received 77,464 views in the 1-month period (from Facebook and Google; information not available for Reddit) and 2808 study page views. After clicking on the advertisements, there were 1254 initiations of the eligibility screening survey, which resulted in 98 eligible survey participants (75 recruited from Facebook, 14 from Google Ads, and 9 from Reddit). The cost for each eligible participant in each platform was US $49.48 for Facebook, US $265.93 for Google Ads, and US $182.78 for Reddit. A total of 84% (66/79) of those who screened eligible from Facebook completed the short survey compared with 73% (8/11) of those who screened eligible from Reddit and 13% (7/53) of those who screened eligible from Google Ads. Conclusions: These results suggest that Facebook advertisements may be the most time- and cost-effective strategy to recruit people who considered but did not obtain an abortion in the United States. Adapting and implementing Facebook-based recruitment strategies for research on abortion access could facilitate a more complete understanding of the barriers to abortion care in the United States. %M 33625368 %R 10.2196/22854 %U https://formative.jmir.org/2021/2/e22854 %U https://doi.org/10.2196/22854 %U http://www.ncbi.nlm.nih.gov/pubmed/33625368 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 2 %P e18385 %T Improving Efficiency of Clinical Studies Using a Total Digital Approach: Prospective Observational Study %A Schenck-Gustafsson,Karin %A Carnlöf,Carina %A Jensen-Urstad,Mats %A Insulander,Per %+ Heart and Vascular Theme, Karolinska University Hospital, Karolinska Institutet, Norrbacka S1:02, Stockholm, S 17176, Sweden, 46 707686487, karin.schenck-gustafsson@ki.se %K ECG recordings %K women %K palpitations %K full digitalization %K eAuthentication %K BankID %K clinical trial %K mHealth %K electrocardiogram %D 2021 %7 18.2.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: In general, most clinical studies have long recruitment periods. Signing the informed consent is particularly time-consuming when the participant must meet physically with the researchers. Therefore, introducing fully web-based techniques with the use of eAuthentication (BankID) and new digital electrocardiogram (ECG) monitoring could speed up inclusion time, increase adherence, and also reach out to more remote regions. Objective: The objectives of this study were to explore whether inclusion of a large number of participants could be realized quickly by using a total digital approach both for information and signing of informed consent, along with ECG monitoring and instant feedback on a mobile device. We also explored whether this approach can increase adherence in registration of ECG recordings and answering questionnaires, and if it would result in a more geographically uniform distribution of participants covering a wide age span. Methods: Women with palpitations were intensively studied over 2 months by means of a handheld ECG monitoring device (Coala Heart Monitor). The device connects to a smartphone or tablet, which allows the participants to obtain the results immediately. Recruitment, study information, and signing the informed consent form with the help of BankID were performed in a completely digital manner. Results: Between March and May 2018, 2424 women indicated their interest in participating in the study. On June 19, 2018, presumptive participants were invited to log in and register. After 25 days, 1082 women were included in the study; among these, 1020 women fulfilled the inclusion criteria, 913 of whom completed all phases of the study: recording ECG using the handheld device, completion of the prestudy questionnaires, and completion of the poststudy questionnaires 2 months after the ECG recordings. The dropout rate was 9%. In total, 101,804 ECG recordings were made. The mean age was 56 (SD 11) years (range 21-88 years) and 35 participants were 75 years or older. The participants were evenly distributed between living in the countryside and in cities. Conclusions: Total digital inclusion recruitment of 1082 participants was achieved in only 25 days, and resulted in a good geographical distribution, excellent adherence, and ability to reach a vast age span, including elderly women. Studies using a total digital design would be particularly appealing during a pandemic since physical contact should be avoided as much as possible. Trial Registration: ISRCTN Registry ISRCTN22495299; http://www.isrctn.com/ISRCTN22495299 %M 33599617 %R 10.2196/18385 %U http://formative.jmir.org/2021/2/e18385/ %U https://doi.org/10.2196/18385 %U http://www.ncbi.nlm.nih.gov/pubmed/33599617 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 5 %N 2 %P e19234 %T Recruitment of Participants for a 3D Virtual Supermarket: Cross-sectional Observational Study %A Hoenink,Jody C %A Mackenbach,Joreintje D %A van der Laan,Laura Nynke %A Lakerveld,Jeroen %A Waterlander,Wilma %A Beulens,Joline W J %+ Department of Epidemiology and Data Science, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Public Health Research Institute, De Boelelaan 1117, Amsterdam, Netherlands, 31 204449681, j.c.hoenink@amsterdamumc.nl %K online study %K nudges %K pricing %K recruitment strategies %D 2021 %7 9.2.2021 %9 Original Paper %J JMIR Form Res %G English %X Background: Virtual supermarkets offer a practical and affordable setting to test the efficacy of different pricing and nudging strategies before they are implemented in the real world. Despite the advantages of using virtual supermarkets for this purpose, conducting studies in online settings is challenging with regard to recruitment and retention of sufficient and suitable participants. Objective: To describe cost, time, and retention with regard to participants recruited using various strategies and potential sociodemographic differences between participants recruited via different strategies. Methods: This cross-sectional study used data from a randomized controlled trial in which 455 Dutch adults with low and high educational levels were invited to shop 5 times in a 3D virtual supermarket. Participants were recruited via social media and flyers. A log that tracked the costs of and time spent on the different recruitment strategies was kept by the study team. Outcome measures included the cost of recruitment strategies, the time investment by researchers, and recruitment and attrition rates of participants in the study. Results: The median age of study completers was 31.0 (IQR 25.0) and 157 out of 346 study completers (45.4%) were highly educated. Out of the 455 included participants, 235 (51.6%) were recruited via social media campaigns, 131 (28.8%) via home-delivered flyers, 38 (8.4%) via flyers directly distributed by the study team, and 46 (10.1%) via word-of-mouth. Of all paid recruitment strategies, social media campaigns were the cheapest and least time-consuming, whereas the distribution of flyers by the study team was the most expensive and time-consuming recruitment strategy. Age, sex, overweight status, employment situation, and number of adults within the household varied by recruitment strategy. Conclusions: Using different recruitment strategies resulted in the efficient recruitment of a representative study sample and retention of participants was relatively high. While “word-of-mouth” was the most cost- and time-effective recruitment strategy, using only one type of recruitment strategy could result in a demographically skewed study population. %M 33560230 %R 10.2196/19234 %U http://formative.jmir.org/2021/2/e19234/ %U https://doi.org/10.2196/19234 %U http://www.ncbi.nlm.nih.gov/pubmed/33560230 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 12 %P e20653 %T Addressing Public Health Emergencies via Facebook Surveys: Advantages, Challenges, and Practical Considerations %A Grow,André %A Perrotta,Daniela %A Del Fava,Emanuele %A Cimentada,Jorge %A Rampazzo,Francesco %A Gil-Clavel,Sofia %A Zagheni,Emilio %+ Laboratory of Digital and Computational Demography, Max Planck Institute for Demographic Research, Konrad-Zuse-Str 1, Rostock, 18057, Germany, 49 3812081142, grow@demogr.mpg.de %K Facebook %K web-based surveys %K public health emergency %K COVID-19 %D 2020 %7 14.12.2020 %9 Viewpoint %J J Med Internet Res %G English %X Surveys of the general population can provide crucial information for designing effective nonpharmaceutical interventions to tackle public health emergencies, such as the COVID-19 pandemic. Yet, conducting such surveys can be difficult, especially when timely data collection is required. In this viewpoint paper, we discuss our experiences with using targeted Facebook advertising campaigns to address these difficulties in relation to the COVID-19 pandemic. We describe central advantages, challenges, and practical considerations. This includes a discussion of potential sources of bias and how they can be addressed. %M 33284782 %R 10.2196/20653 %U http://www.jmir.org/2020/12/e20653/ %U https://doi.org/10.2196/20653 %U http://www.ncbi.nlm.nih.gov/pubmed/33284782 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 12 %P e23480 %T Recruitment of Youth Living With HIV to Optimize Adherence and Virologic Suppression: Testing the Design of Technology-Based Community Health Nursing to Improve Antiretroviral Therapy (ART) Clinical Trials %A Agwu,Allison Lorna %A Yusuf,Hasiya Eihuri %A D'Angelo,Lawrence %A Rathore,Mobeen %A Marchesi,Jeanette %A Rowell,Julia %A Smith,Raina %A Toppins,Jackie %A Trexler,Constance %A Carr,Rashida %A Johnson,Betty %A Selden,Aaron Keith %A Mahmoudi,Saniyyah %A Black,Susan %A Guadamuz,Jisell %A Huettner,Steven %A Trent,Maria %+ Department of Pediatric and Adult Infectious Diseases, Johns Hopkins School of Medicine, 200 North Wolfe Street, Baltimore, MD, 21287, United States, 1 4106143917, ageorg10@jhmi.edu %K adolescent %K youth %K community health nursing %K HIV %K adherence %K viral suppression %K mobile health %D 2020 %7 11.12.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Despite advances in HIV diagnosis and treatment, adolescents and young adults 12-25 years old have high HIV incidence, poor engagement and retention in treatment, and low rates of adherence and virologic suppression when compared to their older counterparts. HIV has emerged as a chronic disease for which antiretroviral therapy (ART) adherence is critical for virologic suppression and long-term survival. Virologic suppression has been elusive for many youth with HIV (YHIV). Novel strategies designed to facilitate health care systems’ support for YHIV between medical visits are essential for improving ART adherence, virologic suppression, and long-term survival. Objective: The aim of this study is to compare the effectiveness of a technology-enhanced community health nursing intervention (TECH2CHECK) to a standard of care (SOC) control group for improving ART adherence and subsequent viral suppression using a randomized trial design. The objectives are to assess the feasibility, acceptability, and cost-effectiveness of TECH2CHECK as compared to SOC for management of HIV in the outpatient setting and to examine the sustainability of self-care behavior, adherence, and virologic suppression among youth following the intervention period. Methods: We will recruit 120 adherence-challenged YHIV being followed at clinics specializing in HIV care in the Baltimore-Washington metropolitan area and in Jacksonville. Eligible participants complete an audio, computer-assisted self-interview and are randomized to either TECH2CHECK intervention or the SOC (60 participants in each arm). The primary outcome of interest is virologic suppression (viral load <20 copies/mL) and improved treatment adherence. Participants in the intervention arm receive community health nursing visits at 2 weeks, 6 weeks, 10 weeks, 14 weeks, and 26 weeks. The intervention arm also receives SMS messaging comprising daily adherence and appointment reminders and positive reinforcement for medication adherence daily for 2 weeks, on alternate days for 2 weeks, thrice weekly for 1 month, weekly for 3 months, and every 2 weeks for the rest of the study duration. The control group receives appointment reminders and SOC per clinic protocol. Exploratory analysis will be conducted to determine differences in medication adherence and virologic suppression in the 2 arms and to assess cost-effectiveness and study feasibility and acceptability. Results: In the first 23 months of the study (July 2018-April 2020), 56 (55%) of 102 eligible patients were enrolled and randomized. At present, participating youths are primarily African American (53/56, 95%), male (37/56, 66%), and ≥18 years old (53/56, 95%). Follow-up study visits, as required per the protocol, have been completed by 77% (43/56), 94% (45/48), 95% (37/39), 96% (24/25), and 100% (10/10) of participants at the 1-month, 3-month, 6-month, 12-month, and 18-month follow-ups, respectively. Conclusions: Preliminary accrual and retention data suggest that TECH2CHECK is feasible and acceptable. Trial Registration: ClinicalTrials.gov NCT03600103 https://clinicaltrials.gov/ct2/show/NCT03600103 International Registered Report Identifier (IRRID): DERR1-10.2196/23480 %M 33306036 %R 10.2196/23480 %U https://www.researchprotocols.org/2020/12/e23480 %U https://doi.org/10.2196/23480 %U http://www.ncbi.nlm.nih.gov/pubmed/33306036 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 11 %P e22179 %T Online Patient Recruitment in Clinical Trials: Systematic Review and Meta-Analysis %A Brøgger-Mikkelsen,Mette %A Ali,Zarqa %A Zibert,John R %A Andersen,Anders Daniel %A Thomsen,Simon Francis %+ Department of Dermatology, Bispebjerg Hospital, Bispebjerg Bakke 23, Copenhagen, 2400, Denmark, 45 28901012, mette.mikkelsen@studiesandme.com %K online clinical trial %K web-based clinical trial %K hybrid clinical trial %K online recruitment %K remote recruitment %K recruitment %K clinical trial %K conversion rate %D 2020 %7 4.11.2020 %9 Review %J J Med Internet Res %G English %X Background: Recruitment for clinical trials continues to be a challenge, as patient recruitment is the single biggest cause of trial delays. Around 80% of trials fail to meet the initial enrollment target and timeline, and these delays can result in lost revenue of as much as US $8 million per day for drug developing companies. Objective: This study aimed to conduct a systematic review and meta-analysis examining the effectiveness of online recruitment of participants for clinical trials compared with traditional in-clinic/offline recruitment methods. Methods: Data on recruitment rates (the average number of patients enrolled in the study per month and per day of active recruitment) and conversion rates (the percentage of participants screened who proceed to enroll into the clinical trial), as well as study characteristics and patient demographics were collected from the included studies. Differences in online and offline recruitment rates and conversion rates were examined using random effects models. Further, a nonparametric paired Wilcoxon test was used for additional analysis on the cost-effectiveness of online patient recruitment. All data analyses were conducted in R language, and P<.05 was considered significant. Results: In total, 3861 articles were screened for inclusion. Of these, 61 studies were included in the review, and 23 of these were further included in the meta-analysis. We found online recruitment to be significantly more effective with respect to the recruitment rate for active days of recruitment, where 100% (7/7) of the studies included had a better online recruitment rate compared with offline recruitment (incidence rate ratio [IRR] 4.17, P=.04). When examining the entire recruitment period in months we found that 52% (12/23) of the studies had a better online recruitment rate compared with the offline recruitment rate (IRR 1.11, P=.71). For cost-effectiveness, we found that online recruitment had a significantly lower cost per enrollee compared with offline recruitment (US $72 vs US $199, P=.04). Finally, we found that 69% (9/13) of studies had significantly better offline conversion rates compared with online conversion rates (risk ratio 0.8, P=.02). Conclusions: Targeting potential participants using online remedies is an effective approach for patient recruitment for clinical research. Online recruitment was both superior in regard to time efficiency and cost-effectiveness compared with offline recruitment. In contrast, offline recruitment outperformed online recruitment with respect to conversion rate. %M 33146627 %R 10.2196/22179 %U https://www.jmir.org/2020/11/e22179 %U https://doi.org/10.2196/22179 %U http://www.ncbi.nlm.nih.gov/pubmed/33146627 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e22810 %T The Role of Social Media in Enhancing Clinical Trial Recruitment: Scoping Review %A Darmawan,Ida %A Bakker,Caitlin %A Brockman,Tabetha A %A Patten,Christi A %A Eder,Milton %+ Hubbard School of Journalism and Mass Communication, University of Minnesota, 206 Church St SE, Minneapolis, MN, 55455, United States, 1 612 735 8974, darma002@umn.edu %K social media %K clinical trial %K recruitment methods %K enrollment methods %K review %D 2020 %7 26.10.2020 %9 Review %J J Med Internet Res %G English %X Background: Recruiting participants into clinical trials continues to be a challenge, which can result in study delay or termination. Recent studies have used social media to enhance recruitment outcomes. An assessment of the literature on the use of social media for this purpose is required. Objective: This study aims to answer the following questions: (1) How is the use of social media, in combination with traditional approaches to enhance clinical trial recruitment and enrollment, represented in the literature? and (2) Do the data on recruitment and enrollment outcomes presented in the literature allow for comparison across studies? Methods: We conducted a comprehensive literature search across 7 platforms to identify clinical trials that combined social media and traditional methods to recruit patients. Study and participant characteristics, recruitment methods, and recruitment outcomes were evaluated and compared. Results: We identified 2371 titles and abstracts through our systematic search. Of these, we assessed 95 full papers and determined that 33 studies met the inclusion criteria. A total of 17 studies reported enrollment outcomes, of which 9 achieved or exceeded their enrollment target. The proportion of participants enrolled from social media in these studies ranged from 0% to 49%. Across all 33 studies, the proportion of participants recruited and enrolled from social media varied greatly. A total of 9 studies reported higher enrollment rates from social media than any other methods, and 4 studies reported the lowest cost per enrolled participant from social media. Conclusions: While the assessment of the use of social media to improve clinical trial participation is hindered by reporting inconsistencies, preliminary data suggest that social media can increase participation and reduce per-participant cost. The adoption of consistent standards for reporting recruitment and enrollment outcomes is required to advance our understanding and use of social media to support clinical trial success. %M 33104015 %R 10.2196/22810 %U http://www.jmir.org/2020/10/e22810/ %U https://doi.org/10.2196/22810 %U http://www.ncbi.nlm.nih.gov/pubmed/33104015 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 7 %N 10 %P e18762 %T Performance, Cost-Effectiveness, and Representativeness of Facebook Recruitment to Suicide Prevention Research: Online Survey Study %A Lee,Sylvia %A Torok,Michelle %A Shand,Fiona %A Chen,Nicola %A McGillivray,Lauren %A Burnett,Alexander %A Larsen,Mark Erik %A Mok,Katherine %+ Black Dog Institute, University of New South Wales, Hospital Road, Sydney, 2031, Australia, 61 0415677477, m.torok@unsw.edu.au %K research subject recruitment %K social media %K suicide %D 2020 %7 22.10.2020 %9 Original Paper %J JMIR Ment Health %G English %X Background: Researchers are increasingly using social media advertisements to recruit participants because of their many advantages over traditional methods. Although there is growing evidence for the effectiveness and cost-effectiveness of social media recruitment in the health sciences, no studies have yet examined this in the context of suicide prevention, which remains to be a highly stigmatized and sensitive topic. Objective: This study aims to recruit a general community sample to complete a survey on suicide literacy, stigma, and risk via Facebook advertisements. Specifically, we aim to establish the performance of the advertisements, cost-effectiveness, sample representativeness, and the impact of gender-specific advertising on recruiting men into the study. Methods: From June 2017 to March 2019, we released Facebook advertisements targeted at adults 18 years or older, residing in the New South Wales (NSW) trial or control regions, and involved in the LifeSpan suicide prevention trial. Cost-effectiveness was examined descriptively using metrics provided by Facebook. Chi-square analyses were conducted to determine demographic differences between our sample and the general NSW population as well as the impact of gender-specific advertisements on gender engagement. Results: The 14 Facebook advertisement campaigns reached a total of 675,199 people, yielding 25,993 link clicks and resulting in 9603 individuals initiating the survey (7487 completions) at an overall cost of Aus $2.81 (US $2.01) per participant. There was an overrepresentation of younger (P=.003), female (P=.003), highly educated (P<.001) participants and mental health conditions (P<.001) compared with the total NSW population. The use of male-specific advertisements resulted in a significantly higher proportion of men completing the survey relative to gender-neutral advertisements (38.2% vs 24.6%; P<.001). Conclusions: This study demonstrates the potential of Facebook to be an effective, low-cost strategy for recruiting a large sample of general community participants for suicide prevention research. Strategies to improve sample representativeness warrant further investigation in future research. %M 33090115 %R 10.2196/18762 %U http://mental.jmir.org/2020/10/e18762/ %U https://doi.org/10.2196/18762 %U http://www.ncbi.nlm.nih.gov/pubmed/33090115 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e19129 %T Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review %A De Sutter,Evelien %A Zaçe,Drieda %A Boccia,Stefania %A Di Pietro,Maria Luisa %A Geerts,David %A Borry,Pascal %A Huys,Isabelle %+ Clinical Pharmacology and Pharmacotherapy, Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, O&N II – Herestraat 49 – Box 521, Leuven, 3000, Belgium, 32 16 37 98 82, evelien.desutter@kuleuven.be %K Informed consent %K systematic review %K biomedical research %K user interface %K research ethics %K digital health %D 2020 %7 8.10.2020 %9 Review %J J Med Internet Res %G English %X Background: Informed consent is one of the key elements in biomedical research. The introduction of electronic informed consent can be a way to overcome many challenges related to paper-based informed consent; however, its novel opportunities remain largely unfulfilled due to several barriers. Objective: We aimed to provide an overview of the ethical, legal, regulatory, and user interface perspectives of multiple stakeholder groups in order to assist responsible implementation of electronic informed consent in biomedical research. Methods: We conducted a systematic literature search using Web of Science (Core collection), PubMed, EMBASE, ACM Digital Library, and PsycARTICLES. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were used for reporting this work. We included empirical full-text studies focusing on the concept of electronic informed consent in biomedical research covering the ethical, legal, regulatory, and user interface domains. Studies written in English and published from January 2010 onward were selected. We explored perspectives of different stakeholder groups, in particular researchers, research participants, health authorities, and ethics committees. We critically appraised literature included in the systematic review using the Newcastle-Ottawa scale for cohort and cross-sectional studies, Critical Appraisal Skills Programme for qualitative studies, Mixed Methods Appraisal Tool for mixed methods studies, and Jadad tool for randomized controlled trials. Results: A total of 40 studies met our inclusion criteria. Overall, the studies were heterogeneous in the type of study design, population, intervention, research context, and the tools used. Most of the studies’ populations were research participants (ie, patients and healthy volunteers). The majority of studies addressed barriers to achieving adequate understanding when using electronic informed consent. Concerns shared by multiple stakeholder groups were related to the security and legal validity of an electronic informed consent platform and usability for specific groups of research participants. Conclusions: Electronic informed consent has the potential to improve the informed consent process in biomedical research compared to the current paper-based consent. The ethical, legal, regulatory, and user interface perspectives outlined in this review might serve to enhance the future implementation of electronic informed consent. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42020158979; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=158979 %M 33030440 %R 10.2196/19129 %U https://www.jmir.org/2020/10/e19129 %U https://doi.org/10.2196/19129 %U http://www.ncbi.nlm.nih.gov/pubmed/33030440 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e23021 %T Threats of Bots and Other Bad Actors to Data Quality Following Research Participant Recruitment Through Social Media: Cross-Sectional Questionnaire %A Pozzar,Rachel %A Hammer,Marilyn J %A Underhill-Blazey,Meghan %A Wright,Alexi A %A Tulsky,James A %A Hong,Fangxin %A Gundersen,Daniel A %A Berry,Donna L %+ Phyllis F Cantor Center for Research in Nursing and Patient Care Services, Dana-Farber Cancer Institute, 450 Brookline Ave, LW517, Boston, MA, , United States, 1 857 215 0743, rachel_pozzar@dfci.harvard.edu %K social media %K internet %K methods %K data accuracy %K fraud %D 2020 %7 7.10.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Recruitment of health research participants through social media is becoming more common. In the United States, 80% of adults use at least one social media platform. Social media platforms may allow researchers to reach potential participants efficiently. However, online research methods may be associated with unique threats to sample validity and data integrity. Limited research has described issues of data quality and authenticity associated with the recruitment of health research participants through social media, and sources of low-quality and fraudulent data in this context are poorly understood. Objective: The goal of the research was to describe and explain threats to sample validity and data integrity following recruitment of health research participants through social media and summarize recommended strategies to mitigate these threats. Our experience designing and implementing a research study using social media recruitment and online data collection serves as a case study. Methods: Using published strategies to preserve data integrity, we recruited participants to complete an online survey through the social media platforms Twitter and Facebook. Participants were to receive $15 upon survey completion. Prior to manually issuing remuneration, we reviewed completed surveys for indicators of fraudulent or low-quality data. Indicators attributable to respondent error were labeled suspicious, while those suggesting misrepresentation were labeled fraudulent. We planned to remove cases with 1 fraudulent indicator or at least 3 suspicious indicators. Results: Within 7 hours of survey activation, we received 271 completed surveys. We classified 94.5% (256/271) of cases as fraudulent and 5.5% (15/271) as suspicious. In total, 86.7% (235/271) provided inconsistent responses to verifiable items and 16.2% (44/271) exhibited evidence of bot automation. Of the fraudulent cases, 53.9% (138/256) provided a duplicate or unusual response to one or more open-ended items and 52.0% (133/256) exhibited evidence of inattention. Conclusions: Research findings from several disciplines suggest studies in which research participants are recruited through social media are susceptible to data quality issues. Opportunistic individuals who use virtual private servers to fraudulently complete research surveys for profit may contribute to low-quality data. Strategies to preserve data integrity following research participant recruitment through social media are limited. Development and testing of novel strategies to prevent and detect fraud is a research priority. %M 33026360 %R 10.2196/23021 %U http://www.jmir.org/2020/10/e23021/ %U https://doi.org/10.2196/23021 %U http://www.ncbi.nlm.nih.gov/pubmed/33026360 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 10 %P e18556 %T Research Participants’ Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort %A Rees-Punia,Erika %A Patel,Alpa V %A Beckwitt,Asher %A Leach,Corinne R %A Gapstur,Susan M %A Smith,Tenbroeck G %+ American Cancer Society, 250 Williams St, Atlanta, GA, 30303, United States, 1 4049823684, erika.rees-punia@cancer.org %K focus groups %K health information technology %K epidemiologic studies %D 2020 %7 1.10.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. Objective: The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. Methods: CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. Results: Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. Conclusions: In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study. %M 33001033 %R 10.2196/18556 %U https://www.jmir.org/2020/10/e18556 %U https://doi.org/10.2196/18556 %U http://www.ncbi.nlm.nih.gov/pubmed/33001033 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 6 %N 4 %P e18000 %T Peer Recruitment Strategies for Female Sex Workers Not Engaged in HIV Prevention and Treatment Services in Côte d’Ivoire: Program Data Analysis %A Olawore,Oluwasolape %A Astatke,Hibist %A Lillie,Tiffany %A Persaud,Navindra %A Lyons,Carrie %A Kamali,Didier %A Wilcher,Rose %A Baral,Stefan %+ Department of Epidemiology, Johns Hopkins School of Public Health, 615 N Wolfe Street, Baltimore, MD, United States, 1 4434959178, oolawor1@jhmi.edu %K female sex workers %K HIV %K Côte d’Ivoire %K programmatic data %K peer referral %D 2020 %7 1.10.2020 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: In the context of the mostly generalized HIV epidemic in Côte d’Ivoire, key populations bear a higher burden of HIV than that borne by the general reproductive-aged population. Mathematical models have demonstrated the significant potential impact and cost-effectiveness of improving the coverage of HIV prevention and treatment services for key populations in Côte d’Ivoire. However, in 2019, coverage of these services remained limited by multiple intersecting stigmas affecting key populations, necessitating the study of innovative implementation strategies to better meet the needs of those most marginalized. Here, we leverage programmatic data to compare the effectiveness of the enhanced and traditional peer outreach approaches in reaching and providing community HIV testing to female sex workers not readily engaged in HIV prevention and treatment services in Côte d’Ivoire. Objective: The aim of this study was to describe the characteristics of female sex workers reached by the LINKAGES project in Côte d’Ivoire with enhanced peer outreach and traditional peer outreach and to compare HIV-related outcomes between the women reached by both strategies. Methods: Deidentified routine programmatic data collected as part of LINKAGES Côte d’Ivoire between October 2017 and April 2018 were used in these analyses. Demographic characteristics and HIV indicators including HIV testing history, HIV case-finding, linkage to HIV treatment, and treatment initiation were assessed using descriptive statistics. Differences in these indicators were compared by outreach strategy using Pearson chi-square tests. Results: There were 9761 women reached with enhanced peer outreach and routine peer outreach included in these analyses. The overall case-finding rate in the sample was 7.8% (698/8851). Compared with women reached by routine outreach, those reached by enhanced peer outreach were more likely to have previously been tested for HIV (enhanced: 1695/2509, 67.6%; routine: 4302/7252, 60.0%; χ21=43.8; P=.001). The enhanced peer outreach approach was associated with a higher HIV case-finding rate (enhanced: 269/2507 10.7%; routine: 429/6344, 6.8%; χ21=32.3; P=.001), higher proportion of linkage to treatment (enhanced: 258/269, 95.9%; routine: 306/429, 71.3%; χ21=64.4; P=.001), and higher proportion of treatment initiation (enhanced: 212/269, 78.8%; routine: 315/429, 73.3%; χ21=2.6; P=.11). Women reached by both approaches were categorized as high risk for HIV-related behaviors such as condomless sex and number of sex acts in the previous week. Conclusions: These analyses suggest that the novel peer-referral strategy, the enhanced peer outreach approach, was effective in reaching female sex workeres in Côte d’Ivoire with demonstrated acquisition risks for HIV and who had not been effectively engaged by routine outreach approaches. Scaling up novel strategies such as enhanced peer outreach in the context of differentiated service models may be needed to optimize HIV prevention and treatment outcomes for key populations in Côte d’Ivoire. %M 33001039 %R 10.2196/18000 %U https://publichealth.jmir.org/2020/4/e18000 %U https://doi.org/10.2196/18000 %U http://www.ncbi.nlm.nih.gov/pubmed/33001039 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 9 %P e19138 %T Phone Calls to Retain Research Participants and Determinants of Reachability in an African Setting: Observational Study %A Draaijer,Melvin %A Lalla-Edward,Samanta Tresha %A Venter,Willem Daniel Francois %A Vos,Alinda %+ Julius Global Health, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Universiteitsweg 100, Utrecht, , Netherlands, 31 0887577136, A.G.Vos-8@umcutrecht.nl %K retention %K loss to follow-up %K phone %K mobile phones %K HIV %K ART %K South Africa %D 2020 %7 30.9.2020 %9 Original Paper %J JMIR Form Res %G English %X Background: Long-term retention of research participants in studies is challenging. In research in sub-Saharan Africa, phone calls are the most frequently used method to distantly engage with participants. Objective: We aimed to get insight into the effectiveness of phone calls to retain contact with participants and evaluated determinants of reachability. Methods: A cross-sectional study was performed using the databases of two randomized controlled trials investigating different kinds of antiretroviral therapy in HIV-positive patients. One trial finished in 2018 (study 1), and the other finished in 2015 (study 2). A random sample size of 200 participants per study was obtained. There were up to 3 phone numbers available per participant collected during the studies. Participants received a maximum of 3 phone calls on every available number on different days and at different times. Voicemails were left, and emails sent wherever possible. We documented how many calls were answered, who answered, as well as after how many attempts participants were reached. To further increase our understanding of reachability, we conducted a short questionnaire assessing factors contributing to reachability. The study was approved by the Research Ethics Committee of the University of Witwatersrand, Johannesburg, South Africa (reference number M1811107). Results: In our sample size of n=200 per study, study 1, with a median time of 11 months since the last visit at the research site, had a response rate of 70.5% (141/200) participants while study 2, with a median duration of 55 months since the last visit, had a response rate of 50.0% (100/200; P<.001). In study 1, 61.5% (123/200) of calls were answered directly by the participant while this was 36.0% (72/200) in study 2 (P=.003). The likelihood of reaching a participant decreased with time (odds ratio [OR] 0.73, 95% CI 0.63 to 0.84) for every year since the last face-to-face visit. Having more phone numbers per participant increased reachability (OR 2.32, 95% CI 1.24 to 4.36 for 2 phone numbers and OR 3.03, 95% CI 1.48 to 6.22 for 3 phone numbers compared with 1 number). A total of 141 of 241 reached participants responded to the questionnaire. Of the 93 participants who had changed phone numbers, 5% (50/93) had changed numbers because their phone was stolen. The most preferred method of being contacted was direct calling (128/141) with participants naming this method followed by WhatsApp (69/141). Conclusions: Time since last visit and the number of phone numbers listed were the only determinants of reachability. Longer follow-up time is accompanied with a decrease in reachability by phone while more listed phone numbers increases the likelihood that someone can be reached. Trial Registration: ClinicalTrials.gov NCT02671383; https://clinicaltrials.gov/ct2/show/NCT02671383 and ClinicalTrials.gov NCT02670772; https://clinicaltrials.gov/ct2/show/NCT02670772 %M 32996891 %R 10.2196/19138 %U http://formative.jmir.org/2020/9/e19138/ %U https://doi.org/10.2196/19138 %U http://www.ncbi.nlm.nih.gov/pubmed/32996891 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 9 %P e16752 %T Evaluating Two Common Strategies for Research Participant Recruitment Into Autism Studies: Observational Study %A Ahmed,Kelli L %A Simon,Andrea R %A Dempsey,Jack R %A Samaco,Rodney C %A Goin-Kochel,Robin P %+ Autism Center, Texas Children's Hospital, 8080 N Stadium Drive, Suite 100, Houston, TX, 77054, United States, 1 8328243390, kochel@bcm.edu %K autism spectrum disorder %K participant recruitment %K social media %K Facebook %K radio %K genetic studies %D 2020 %7 24.9.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Ongoing research is necessary to better understand the causes of autism spectrum disorder (ASD), the developmental outcomes for individuals diagnosed with ASD, and the efficacy of the interventions. However, it is often difficult to recruit sufficient numbers of participants for studies, and despite the prevalence of ASD (currently estimated to affect 1 in 54 children), little research has focused on how to efficiently recruit participants with ASD. Objective: The aim of this study was to determine the efficacy of two different paid advertisements—social media and radio advertising—in recruiting participants for a study enrolling people with ASD and their family members by examining the number of participants enrolled, the cost per participant, and the geographic reach of each type of advertising. Methods: We examined participant enrollment in a study following nonoverlapping paid advertisements on a popular FM radio station (aired in three cities across two states) and Facebook (six advertisements that ran in five cities across two states). The total paid investment in the radio campaign was $12,030 and that in the Facebook campaign was $2950. Following the advertising campaigns, 1391 participants in the study who were affiliated with the Houston, Texas, site received email invitations to participate in a brief survey about the ways in which they learned about the study (eg, social media, medical provider, website) and which of these were most influential in their decisions to participate; 374 (26.8%) of the participants completed this survey. Results: Social media advertising outperformed radio in all three parameters examined by enrolling more participants (338 vs 149), with a lower average cost per participant ($8.73 vs $80.74) and a wider geographic reach, based on a comparison of the number of zip codes within and outside of Texas for questionnaire respondents who rated social media as the most influential method of contact (n=367, χ21=5.85, P=.02). Of the 374 survey participants, 139 (37.2%) reported that they had seen the study on social media prior to enrollment, while only 9 (2.4%) said they heard about it via radio. Conclusions: Our findings suggest that advertising on social media can efficiently reach a large pool of potential participants with ASD, increasing the likelihood of meeting study enrollment goals. Researchers should consider allocating at least some portion of recruitment dollars to social media platforms as a means of quickly and inexpensively reaching out to their target populations, including for studies with in-person procedures. %M 32969826 %R 10.2196/16752 %U http://www.jmir.org/2020/9/e16752/ %U https://doi.org/10.2196/16752 %U http://www.ncbi.nlm.nih.gov/pubmed/32969826 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 6 %N 3 %P e19219 %T Evaluation of the Sexual Health Behaviors of Black Male Adolescents and Young Adults Through Social Media Platforms: Web-Based Survey Study %A Burns,Jade %A Johnstone,Keith %A Chavanduka,Tanaka %A Jamison,Cornelius %A Pena,Valery %A Stephenson,Rob %A Darbes,Lynae %+ Department of Health Behavior and Biological Sciences, University of Michigan School of Nursing, 400 N. Ingalls, Room 3175, Ann Arbor, MI, 48109, United States, 1 734 936 5311, curryj@umich.edu %K social media %K survey %K adolescent %K young adult %K Black %K males %K sexual health %K service delivery %D 2020 %7 22.9.2020 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Social media platforms such as Facebook, Instagram, and Twitter, which have millions of users who interact and communicate every day, have been effective in promoting sexual health interventions and in disseminating reproductive health education. They have also been shown to be useful in health promotion and have been used to track several key metrics (eg, comments, posts) among users of all demographics. However, there is a lack of research on the impact and reach of these social media platforms as a community-based tool for disseminating sexual health information and for increasing engagement among Black adolescents and young adults, which is a targeted high-risk population. Objective: The purpose of this study was to determine the social media platforms and banner advertisements that affected engagement among Black male adolescents and young adults in participating in web-based health surveys. Methods: A web-based survey was conducted from March 2019 to July 2019 to assess sexual health and health behaviors in a convenience sample of Black male adolescents and young adults in the age range of 18-24 years (N=170). Social media metrics from Facebook, Instagram, and Twitter were monitored. This cross-sectional survey comprised several categories, including basic personal information, drug-related risk behaviors, health care, sexual reproductive health questions, attitudes, norms, and perceived control, mental health, violence-related risk behaviors, and social media preferences. Results: Social media advertisements on the Black Male Opinion survey reached approximately 146,412 individuals. Our primary finding of the web-based survey engagement was that referral (eg, group chat, indirect social media sharing) led to as the greatest proportion of recruitment, with Twitter and YouTube as the preferred sites to receive sexual health information. Conclusions: Recognizing the variety of technologies being used among Black male young adults and adolescents can help the community, researchers, and health care providers understand the web-based engagement of this high-risk population. This information may also promote culturally sensitive, customized marketing on sexual health information for this population. %M 32693387 %R 10.2196/19219 %U http://publichealth.jmir.org/2020/3/e19219/ %U https://doi.org/10.2196/19219 %U http://www.ncbi.nlm.nih.gov/pubmed/32693387 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 9 %P e19471 %T Willingness to Use Home Collection Methods to Provide Specimens for SARS-CoV-2/COVID-19 Research: Survey Study %A Hall,Eric William %A Luisi,Nicole %A Zlotorzynska,Maria %A Wilde,Gretchen %A Sullivan,Patrick %A Sanchez,Travis %A Bradley,Heather %A Siegler,Aaron J %+ Department of Behavioral, Social and Health Education Sciences, Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA, 30322, United States, 1 404 712 9733, asiegle@emory.edu %K COVID-19 %K SARS-CoV-2 %K specimen collection %K survey %K research %K public health %K infectious disease %K virus %K test %D 2020 %7 3.9.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Innovative laboratory testing approaches for SARS-CoV-2 infection and immune response are needed to conduct research to establish estimates of prevalence and incidence. Self-specimen collection methods have been successfully used in HIV and sexually transmitted infection research and can provide a feasible opportunity to scale up SARS-CoV-2 testing for research purposes. Objective: The aim of this study was to assess the willingness of adults to use different specimen collection modalities for themselves and children as part of a COVID-19 research study. Methods: Between March 27 and April 1, 2020, we recruited 1435 adults aged 18 years or older though social media advertisements. Participants completed a survey that included 5-point Likert scale items stating how willing they were to use the following specimen collection testing modalities as part of a research study: home collection of a saliva sample, home collection of a throat swab, home finger-prick blood collection, drive-through site throat swab, clinic throat swab, and clinic blood collection. Additionally, participants indicated how the availability of home-based collection methods would impact their willingness to participate compared to drive-through and clinic-based specimen collection. We used Kruskal-Wallis tests and Spearman rank correlations to assess if willingness to use each testing modality differed by demographic variables and characteristics of interest. We compared the overall willingness to use each testing modality and estimated effect sizes with Cohen d. Results: We analyzed responses from 1435 participants with a median age of 40.0 (SD=18.2) years and over half of which were female (761/1435, 53.0%). Most participants agreed or strongly agreed that they would be willing to use specimens self-collected at home to participate in research, including willingness to collect a saliva sample (1259/1435, 87.7%) or a throat swab (1191/1435, 83.1%). Willingness to collect a throat swab sample was lower in both a drive-through setting (64%) and clinic setting (53%). Overall, 69.0% (990/1435) of participants said they would be more likely to participate in a research study if they could provide a saliva sample or throat swab at home compared to going to a drive-through site; only 4.4% (63/1435) of participants said they would be less likely to participate using self-collected samples. For each specimen collection modality, willingness to collect specimens from children for research was lower than willingness to use on oneself, but the ranked order of modalities was similar. Conclusions: Most participants were willing to participate in a COVID-19 research study that involves laboratory testing; however, there was a strong preference for home specimen collection procedures over drive-through or clinic-based testing. To increase participation and minimize bias, epidemiologic research studies of SARS-CoV-2 infection and immune response should consider home specimen collection methods. %M 32790639 %R 10.2196/19471 %U https://www.jmir.org/2020/9/e19471 %U https://doi.org/10.2196/19471 %U http://www.ncbi.nlm.nih.gov/pubmed/32790639 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e19389 %T Comparing Methods of Recruiting Spanish-Preferring Smokers in the United States: Findings from a Randomized Controlled Trial %A Medina-Ramirez,Patricia %A Calixte-Civil,Patricia %A Meltzer,Lauren R %A Brandon,Karen O %A Martinez,Ursula %A Sutton,Steven K %A Meade,Cathy D %A Byrne,Margaret M %A Brandon,Thomas H %A Simmons,Vani N %+ Tobacco Research & Intervention Program, Department of Health Outcomes & Behavior, Moffitt Cancer Center & Research Institute, 4115 E. Fowler Avenue, Tampa, FL, 33617, United States, 1 813 745 4673 ext 4816, vani.simmons@moffitt.org %K Hispanic %K Latino %K smoking cessation intervention %K randomized controlled trial %K tobacco cigarette %K recruitment %K social media %K Facebook %K web banner ad %D 2020 %7 14.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: There is a pressing need to address the unacceptable disparities and underrepresentation of racial and ethnic minority groups, including Hispanics or Latinxs, in smoking cessation trials. Objective: Given the lack of research on recruitment strategies for this population, this study aims to assess effective recruitment methods based on enrollment and cost. Methods: Recruitment and enrollment data were collected from a nationwide randomized controlled trial (RCT) of a Spanish-language smoking cessation intervention (N=1417). The effectiveness of each recruitment strategy was evaluated by computing the cost per participant (CPP), which is the ratio of direct cost over the number enrolled. More effective strategies yielded lower CPPs. Demographic and smoking-related characteristics of participants recruited via the two most effective strategies were also compared (n=1307). Results: Facebook was the most effective method (CPP=US $74.12), followed by TV advertisements (CPP=US $191.31), whereas public bus interior card advertising was the least effective method (CPP=US $642.50). Participants recruited via Facebook had lower average age (P=.008) and had spent fewer years in the United States (P<.001). Among the participants recruited via Facebook, a greater percentage of individuals had at least a high school education (P<.001) and an annual income above US $10,000 (P<.001). In addition, a greater percentage of individuals were employed (P<.001) and foreign born (P=.003). In terms of subethnicity, among the subjects recruited via Facebook, a lower percentage of individuals were of Mexican origin (P<.001) and a greater percentage of individuals were of Central American (P=.02), South American (P=.01), and Cuban (P<.001) origin. Conclusions: Facebook was the most effective method for recruiting Hispanic or Latinx smokers in the United States for this RCT. However, using multiple methods was necessary to recruit a more diverse sample of Spanish-preferring Hispanic or Latinx smokers. %M 32795986 %R 10.2196/19389 %U https://www.jmir.org/2020/8/e19389 %U https://doi.org/10.2196/19389 %U http://www.ncbi.nlm.nih.gov/pubmed/32795986 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e17768 %T Recruiting Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis to Internet-Delivered Therapy: Internal Pilot Within a Randomized Controlled Trial %A Anderson,Emma %A Parslow,Roxanne %A Hollingworth,William %A Mills,Nicola %A Beasant,Lucy %A Gaunt,Daisy %A Metcalfe,Chris %A Kessler,David %A Macleod,John %A Pywell,Susan %A Pitts,Kieren %A Price,Simon %A Stallard,Paul %A Knoop,Hans %A Van de Putte,Elise %A Nijhof,Sanne %A Bleijenberg,Gijs %A Crawley,Esther %+ Centre for Academic Child Health, Bristol Medical School: Population Health Sciences, University of Bristol, 1-5 Whiteladies Road, Bristol, United Kingdom, 44 117 4283102, emma.anderson@bristol.ac.uk %K pediatrics %K chronic fatigue syndrome %K myalgic encephalomyelitis %K cognitive behavioral therapy %K eHealth %K online systems %K e-therapy %K e-counseling %K pilot projects %K qualitative research %D 2020 %7 12.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents is common and disabling. Teenagers in the United Kingdom are more likely to recover if they access specialist care, but most do not have access to a local specialist CFS/ME service. Delivering treatment remotely via the internet could improve access to treatment. Objective: This study aims to assess (1) the feasibility of recruitment and retention into a trial of internet-delivered specialist treatment for adolescents with CFS/ME and (2) the acceptability of trial processes and 2 web-based treatments (to inform continuation to full trial). Methods: This study is an internal pilot for the initial 12 months of a full randomized controlled trial (RCT), with integrated qualitative methods (analysis of recruitment consultations and participant and clinician interviews). Recruitment and treatment were delivered remotely from a specialist pediatric CFS/ME treatment service within a hospital in South West United Kingdom. Adolescents (aged 11-17 years) from across the United Kingdom with a diagnosis of CFS/ME and no access to local specialist treatment were referred by their general practitioner to the treatment center. Eligibility assessment and recruitment were conducted via remote methods (telephone and on the web), and participants were randomized (via a computer-automated system) to 1 of 2 web-based treatments. The trial intervention was Fatigue in Teenagers on the InterNET in the National Health Service, a web-based modular CFS/ME-specific cognitive behavioral therapy program (designed to be used by young people and their parents or caregivers) supported by individualized clinical psychologist electronic consultations (regular, scheduled therapeutic message exchanges between participants and therapist within the platform). The comparator was Skype-delivered activity management with a CFS/ME clinician (mainly a physiotherapist or occupational therapist). Both treatments were intended to last for up to 6 months. The primary outcomes were (1) the number of participants recruited (per out-of-area referrals received between November 1, 2016, to October 31, 2017) and the proportion providing 6-month outcome data (web-based self-report questionnaire assessing functioning) and (2) the qualitative outcomes indicating the acceptability of trial processes and treatments. Results: A total of 89 out of 150 (59.3% of potentially eligible referrals) young people and their parents or caregivers were recruited, with 75 out of 89 (84.2%) providing 6-month outcome data. Overall, web-based treatment was acceptable; however, participants and clinicians described both the advantages and disadvantages of remote methods. No serious adverse events were reported. Conclusions: Recruiting young people (and their parents or caregivers) into an RCT of web-based treatment via remote methods is feasible and acceptable. Delivering specialist treatment at home via the internet is feasible and acceptable, although some families prefer to travel across the United Kingdom for face-to-face treatment. Trial Registration: ISRCTN 18020851; http://www.isrctn.com/ISRCTN18020851 International Registered Report Identifier (IRRID): RR2-10.1186/s13063-018-2500-3 %M 32784188 %R 10.2196/17768 %U https://www.jmir.org/2020/8/e17768 %U https://doi.org/10.2196/17768 %U http://www.ncbi.nlm.nih.gov/pubmed/32784188 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e17449 %T Using Web-Based Social Media to Recruit Heavy-Drinking Young Adults for Sleep Intervention: Prospective Observational Study %A Ash,Garrett I %A Robledo,David S %A Ishii,Momoko %A Pittman,Brian %A DeMartini,Kelly S %A O'Malley,Stephanie S %A Redeker,Nancy S %A Fucito,Lisa M %+ Department of Psychiatry, Yale School of Medicine, 300 George Street, #901, New Haven, CT, 06511, United States, 1 2034443079, garrett.ash@yale.edu %K substance abuse %K social media %K alcohol drinking %K sleep %K mobile phone %D 2020 %7 11.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Novel alcohol prevention strategies are needed for heavy-drinking young adults. Sleep problems are common among young adults who drink heavily and are a risk factor for developing an alcohol use disorder (AUD). Young adults, interested in the connection between sleep and alcohol, are open to getting help with their sleep. Therefore, sleep interventions may offer an innovative solution. This study evaluates social media advertising for reaching young adults and recruiting them for a new alcohol prevention program focused on sleep. Objective: This study aims to evaluate the effectiveness and cost of using Facebook, Instagram, and Snapchat advertising to reach young adults who drink heavily for a sleep intervention; characterize responders’ sleep, alcohol use, and related concerns and interests; and identify the most appealing advertising content. Methods: In study 1, advertisements targeting young adults with sleep concerns, heavy alcohol use, or interest in participating in a sleep program ran over 3 months. Advertisements directed volunteers to a brief web-based survey to determine initial sleep program eligibility and characterize the concerns or interests that attracted them to click the advertisement. In study 2, three advertisements ran simultaneously for 2 days to enable us to compare the effectiveness of specific advertising themes. Results: In study 1, advertisements generated 13,638 clicks, 909 surveys, and 27 enrolled volunteers in 3 months across the social media platforms. Fees averaged US $0.27 per click, US $3.99 per completed survey, US $11.43 per volunteer meeting initial screening eligibility, and US $106.59 per study enrollee. On average, those who completed the web-based survey were 21.1 (SD 2.3) years of age, and 69.4% (631/909) were female. Most reported sleep concerns (725/909, 79.8%) and an interest in the connection between sleep and alcohol use (547/909, 60.2%), but few had drinking concerns (49/909, 5.4%). About one-third (317/909, 34.9%) were identified as being at risk for developing an AUD based on a validated alcohol screener. Among this subsample, 8.5% (27/317) met the final criteria and were enrolled in the trial. Some volunteers also referred additional volunteers by word of mouth. In study 2, advertisements targeting sleep yielded a higher response rate than advertisements targeting alcohol use (0.91% vs 0.56% click rate, respectively; P<.001). Conclusions: Social media advertisements designed to target young adults with sleep concerns reached those who also drank alcohol heavily, despite few being concerned about their drinking. Moreover, advertisements focused on sleep were more effective than those focused on drinking. Compared with previous studies, cost-effectiveness was moderate for engagement (impressions to clicks), excellent for conversion (clicks to survey completion), and reasonable for enrollment. These data demonstrate the utility of social media advertising focused on sleep to reach young adults who drink heavily and recruit them for intervention. %M 32780027 %R 10.2196/17449 %U https://www.jmir.org/2020/8/e17449 %U https://doi.org/10.2196/17449 %U http://www.ncbi.nlm.nih.gov/pubmed/32780027 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 8 %P e16239 %T #BlackBreastsMatter: Process Evaluation of Recruitment and Engagement of Pregnant African American Women for a Social Media Intervention Study to Increase Breastfeeding %A Dauphin,Cassy %A Clark,Nikia %A Cadzow,Renee %A Saad-Harfouche,Frances %A Rodriguez,Elisa %A Glaser,Kathryn %A Kiviniemi,Marc %A Keller,Maria %A Erwin,Deborah %+ Cancer Prevention and Control, Roswell Park Comprehensive Cancer Center, Elm and Carlton Streets, Buffalo, NY, 14263, United States, 1 716 845 2927, deborah.erwin@roswellpark.org %K breastfeeding %K breast cancer education %K African American mothers %K Facebook %K mobile phone, social media %D 2020 %7 10.8.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: In the United States, there are lower rates of breastfeeding among African American mothers, particularly those who are younger women. Recent epidemiological studies have shown a strong association of more aggressive types of breast cancer (estrogen receptor negative) among African American women, with a higher risk in African American women who did not breastfeed their children. Objective: This study aims to describe the process evaluation of recruitment and educational strategies to engage pregnant African American participants for a pilot study designed to determine whether social media messaging about breast cancer risk reduction through breastfeeding may positively influence breastfeeding rates. Methods: This pilot study is conducted in collaboration with a local Women, Infants, and Children (WIC) organization and hospital and prenatal clinics of a local health care network. To engage African American women to enroll in the study, several methods and monitoring processes were explored, including WIC electronic text-based messages sent out to all phones of current WIC recipients (referred to as e-blasts); keyword responses to texts from flyers and posters in local community-based organizations, hospitals, and prenatal clinics; keyword responses using electronic links posted in established Facebook groups; and snowball recruitment of other pregnant women by current participants through Facebook. Once enrolled, participants were randomized to 2 study conditions: (1) an intervention group receiving messages about breast cancer risk reduction and breastfeeding or (2) a control group receiving breastfeeding-only messages. Data were obtained through electronic monitoring, SurveyMonkey, qualitative responses on Facebook, focus groups, and interviews. Results: More than 3000 text messages were sent and received through WIC e-blasts and keyword responses from flyers. A total of 472 women were recruited through WIC e-blast, and 161 responded to flyers and contacts through the local health care network, community-based organizations, Facebook, and friend referrals. A total of 633 women were assessed for eligibility to participate in the study. A total of 288 pregnant African American women were enrolled, consented, and completed presurvey assessments (102.8% of the goal), and 22 participants attended focus groups or interviews reporting on their experiences with Facebook and the educational messages. Conclusions: This process evaluation suggests that using electronic, smartphone apps with social media holds promise for both recruitment and conduct of health education intervention studies for pregnant African American women. Providing messaging and resources through social media to reinforce and educate women about breastfeeding and potentially provide lactation support is intriguing. Convenience (for researchers and participants) is an attribute of social media for this demographic of women and worthy of further research as an educational tool. Trial Registration: ClinicalTrials.gov NCT03680235; https://clinicaltrials.gov/ct2/show/NCT03680235 %M 32773377 %R 10.2196/16239 %U https://www.jmir.org/2020/8/e16239 %U https://doi.org/10.2196/16239 %U http://www.ncbi.nlm.nih.gov/pubmed/32773377 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 7 %N 7 %P e17075 %T Design, Recruitment, and Baseline Characteristics of a Virtual 1-Year Mental Health Study on Behavioral Data and Health Outcomes: Observational Study %A Kumar,Shefali %A Tran,Jennifer L A %A Ramirez,Ernesto %A Lee,Wei-Nchih %A Foschini,Luca %A Juusola,Jessie L %+ Evidation Health, 167 2nd Ave, San Mateo, CA, 94401, United States, 1 650 279 8855, jjuusola@evidation.com %K mental health %K anxiety %K depression %K behavioral data %D 2020 %7 23.7.2020 %9 Original Paper %J JMIR Ment Health %G English %X Background: Depression and anxiety greatly impact daily behaviors, such as sleep and activity levels. With the increasing use of activity tracking wearables among the general population, there has been a growing interest in how data collected from these devices can be used to further understand the severity and progression of mental health conditions. Objective: This virtual 1-year observational study was designed with the objective of creating a longitudinal data set combining self-reported health outcomes, health care utilization, and quality of life data with activity tracker and app-based behavioral data for individuals with depression and anxiety. We provide an overview of the study design, report on baseline health and behavioral characteristics of the study population, and provide initial insights into how behavioral characteristics differ between groups of individuals with varying levels of disease severity. Methods: Individuals who were existing members of an online health community (Achievement, Evidation Health Inc) and were 18 years or older who had self-reported a diagnosis of depression or anxiety were eligible to enroll in this virtual 1-year study. Participants agreed to connect wearable activity trackers that captured data related to physical activity and sleep behavior. Mental health outcomes such as the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Questionnaire (GAD-7), mental health hospitalizations, and medication use were captured with surveys completed at baseline and months 3, 6, 9, and 12. In this analysis, we report on baseline characteristics of the sample, including mental health disease severity and health care utilization. Additionally, we explore the relationship between passively collected behavioral data and baseline mental health status and health care utilization. Results: Of the 1304 participants enrolled in the study, 1277 individuals completed the baseline survey and 1068 individuals had sufficient activity tracker data. Mean age was 33 (SD 9) years, and the majority of the study population was female (77.2%, 994/1288) and identified as Caucasian (88.3%, 1137/1288). At baseline, 94.8% (1211/1277) of study participants reported experiencing depression or anxiety symptoms in the last year. This baseline analysis found that some passively tracked behavioral traits are associated with more severe forms of anxiety or depression. Individuals with depressive symptoms were less active than those with minimal depressive symptoms. Severe forms of depression were also significantly associated with inconsistent sleep patterns and more disordered sleep. Conclusions: These initial findings suggest that longitudinal behavioral and health outcomes data may be useful for developing digital measures of health for mental health symptom severity and progression. %M 32706712 %R 10.2196/17075 %U http://mental.jmir.org/2020/7/e17075/ %U https://doi.org/10.2196/17075 %U http://www.ncbi.nlm.nih.gov/pubmed/32706712 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 7 %P e12619 %T Effectiveness of Social Media Approaches to Recruiting Young Adult Cigarillo Smokers: Cross-Sectional Study %A Cavallo,David %A Lim,Rock %A Ishler,Karen %A Pagano,Maria %A Perovsek,Rachel %A Albert,Elizabeth %A Koopman Gonzalez,Sarah %A Trapl,Erika %A Flocke,Susan %+ Department of Nutrition, School of Medicine, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH, 44106-4954, United States, 1 216 368 6627, david.cavallo@case.edu %K adolescent, young adult %K tobacco products %K social media %K research subject recruitment %D 2020 %7 22.7.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: The prevalence of social media use among youth and young adults suggests it is an appropriate platform for study recruitment from this population. Previous studies have examined the use of social media for recruitment, but few have compared platforms, and none, to our knowledge, have attempted to recruit cigarillo users. Objective: The purpose of this study was to examine the effectiveness of different social media platforms and advertisement images for recruiting cigarillo users aged 14-28 years to complete a cigarillo use survey. Methods: We obtained objective data for advertisement impressions for a 39-week social media recruitment campaign. Advertisements were targeted to users based on their age, geography, and interests. Effectiveness was defined as the percentage of approved surveys per advertising impression. Chi-square tests were performed to compare the effectiveness of different advertisement images and platforms. Results: Valid survey completers (n=1089) were predominately older (25-28 years old, n=839, 77%). Of the 1089 survey completers, 568 (52%) identified as male, 335 (31%) as African American, and 196 (18%) as Hispanic. Advertisements delivered via Facebook/Instagram were more effective than Twitter; 311/1,027,738 (0.03%) vs 661/2,998,715 (0.02%); χ21=21.45, N=4,026,453); P<.001. Across platforms, ads featuring exclusively an image of cigarillos were more effective (397/682,994, 0.06%) than ads with images of individuals smoking (254/1,308,675, 0.02%), individuals not smoking (239/1,393,134, .02%), and groups not smoking (82/641,650, 0.01%); χ23133.73, N=4,026,453; P<.001. Conclusions: The campaign was effective in recruiting a diverse sample representative of relevant racial/ethnic categories. Advertisements on Facebook were more effective than Twitter. Advertisements that featured an image of a cigarillo were consistently the most effective and should be considered by others recruiting cigarillo users via social media. %M 32459629 %R 10.2196/12619 %U https://www.jmir.org/2020/7/e12619 %U https://doi.org/10.2196/12619 %U http://www.ncbi.nlm.nih.gov/pubmed/32459629 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 7 %P e18446 %T Recruiting and Retaining Youth and Young Adults in the Policy and Communication Evaluation (PACE) Vermont Study: Randomized Controlled Trial of Participant Compensation %A Villanti,Andrea C %A Vallencourt,Christie P %A West,Julia C %A Peasley-Miklus,Catherine %A LePine,S Elisha %A McCluskey,Caitlin %A Klemperer,Elias %A Priest,Jeffrey S %A Logan,Alison %A Patton,Bill %A Erickson,Nancy %A Hicks,Jennifer %A Horton,Kathleen %A Livingston,Shayla %A Roemhildt,Maria %A Singer,Erin %A Trutor,Megan %A Williams,Rhonda %+ Department of Psychiatry, Vermont Center on Behavior and Health, University of Vermont Larner College of Medicine, 1 South Prospect Street, MS 482, Burlington, VT, 05401, United States, 1 8026561187, avillant@uvm.edu %K recruitment %K retention %K adolescents %K young adults %K prevention %D 2020 %7 20.7.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: The standard approach for evaluating the effects of population-level substance use prevention efforts on youth and young adult perceptions and behaviors has been to compare outcomes across states using national surveillance data. Novel surveillance methods that follow individuals over shorter time intervals and capture awareness of substance use prevention policy and communication efforts may provide a stronger basis for their evaluation than annual cross-sectional studies. Objective: This study aimed to identify a combination of strategies to recruit a sample of youth and young adults sufficiently representative of the Vermont population and determine how best to retain a web-based panel of youth and young adults over a 6-month period. Methods: Eligible participants were Vermont residents aged 12 to 25 years who were willing to complete three 10 to 15-minute web-based surveys over a 6-month period. Recruitment was conducted via the following three main mechanisms: (1) web-based recruitment (paid and unpaid), (2) community-based recruitment through partners, and (3) participant referrals via a personalized link. Upon completion of the baseline survey, participants were randomly assigned to one of the following three retention incentive conditions: (1) guaranteed incentive (US $10), (2) lottery incentive (US $50 weekly lottery drawing), and (3) preferred method (guaranteed or lottery). Analyses examined cost per survey start by recruitment source, distribution of demographic characteristics across incentive conditions, and retention by study condition at 3-month and 6-month follow-ups. Results: Over a 10-week period in 2019, we recruited 480 eligible youth (aged 12-17 years) and 1037 eligible young adults (aged 18-25 years) to the Policy and Communication Evaluation (PACE) Vermont Study. Facebook and Instagram advertising produced the greatest number of survey starts (n=2013), followed by posts to a state-wide web-based neighborhood forum (n=822) and Google advertisements (n=749). Retention was 78.11% (1185/1517) at 3 months and 72.18% (1095/1517) at 6 months. Retention was equivalent across all incentive study conditions at both waves, despite a strong stated preference among study participants for the guaranteed payment at baseline. Youth had greater retention than young adults at both waves (wave 2: 395/480, 82.3% vs 790/1037, 76.18%; wave 3: 366/480, 76.3% vs 729/1037, 70.30%). Substance use prevalence in this cohort was similar to national and state-level surveillance estimates for young adults, but was lower than state-level surveillance estimates for youth. Most participants retained at wave 3 provided positive qualitative feedback on their experience. Conclusions: Our study supports the feasibility of recruiting a web-based cohort of youth and young adults with representation across an entire state to evaluate substance use prevention efforts. Findings suggest that a guaranteed payment immediately upon survey completion coupled with a bonus for completing all survey waves and weekly survey reminders may facilitate retention in a cohort of youth and young adults. %M 32706681 %R 10.2196/18446 %U http://www.jmir.org/2020/7/e18446/ %U https://doi.org/10.2196/18446 %U http://www.ncbi.nlm.nih.gov/pubmed/32706681 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 7 %P e17589 %T Development of “Advancing People of Color in Clinical Trials Now!”: Web-Based Randomized Controlled Trial Protocol %A Chung,Alicia %A Seixas,Azizi %A Williams,Natasha %A Senathirajah,Yalini %A Robbins,Rebecca %A Newsome Garcia,Valerie %A Ravenell,Joseph %A Jean-Louis,Girardin %+ NYU Grossman School of Medicine, 227 East 30th Street, New York, NY, United States, 1 6463872402, alicia.chung@nyumc.org %K health communication %K health care disparities %K eHealth %D 2020 %7 14.7.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Participation in clinical trials among people of color remains low, compared with white subjects. This protocol describes the development of “Advancing People of Color in Clinical Trials Now!” (ACT Now!), a culturally tailored website designed to influence clinical trial decision making among people of color. Objective: This cluster randomized study aims to test the efficacy of a culturally tailored website to increase literacy, self-efficacy, and willingness to enroll in clinical trials among people of color. Methods: ACT Now! is a randomized trial including 2 groups: (1) intervention group (n=50) with access to the culturally tailored website and (2) control group (n=50) exposed to a standard clinical recruitment website. Clinical trial literacy and willingness to enroll in a clinical trial will be measured before and after exposure to the website corresponding to their assigned group (intervention or control). Surveys will be conducted at baseline and during the 1-month postintervention and 3-month follow-up. Website architecture and wireframing will be informed by the literature and experts in the field. Statistical analysis will be conducted using a two-tailed t test, with 80% power, at .05 alpha level, to increase clinical trial literacy, self-efficacy, and willingness to enroll in clinical trials 3 months post intervention. Results: We will design a culturally tailored website that will provide leverage for community stakeholders to influence clinical trial literacy, self-efficacy, and willingness to enroll in clinical trials among racial and ethnic groups. ACT Now! applies a community-based participatory research approach through the use of a community steering committee (CSC). The CSC provides input during the research study conception, development, implementation, and enrollment. CSC relationships help foster trust among communities of color. ACT Now! has the potential to fill a gap in clinical trial enrollment among people of color through an accessible web-based website. This study was funded in July 2017 and obtained institutional review board approval in spring 2017. As of December 2019, we had enrolled 100 participants. Data analyses are expected to be completed by June 2020, and expected results are to be published in fall 2020. Conclusions: ACT Now! has the potential to fill an important gap in clinical trial enrollment among people of color through an accessible web-based website. Trial Registration: ClinicalTrials.gov NCT03243071; https://clinicaltrials.gov/ct2/show/NCT00102401 International Registered Report Identifier (IRRID): DERR1-10.2196/17589 %M 32673274 %R 10.2196/17589 %U https://www.researchprotocols.org/2020/7/e17589 %U https://doi.org/10.2196/17589 %U http://www.ncbi.nlm.nih.gov/pubmed/32673274 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 8 %N 7 %P e17832 %T An Ensemble Learning Strategy for Eligibility Criteria Text Classification for Clinical Trial Recruitment: Algorithm Development and Validation %A Zeng,Kun %A Pan,Zhiwei %A Xu,Yibin %A Qu,Yingying %+ School of Business, Guangdong University of Foreign Studies, 178 Outer Ring East Road, Panyu District, Guangzhou, 510000, China, 86 15521018804, jessie.qu@gdufs.edu.cn %K Deep learning %K Text classification %K Ensemble learning %K Eligibility criteria %K Clinical trial %D 2020 %7 1.7.2020 %9 Original Paper %J JMIR Med Inform %G English %X Background: Eligibility criteria are the main strategy for screening appropriate participants for clinical trials. Automatic analysis of clinical trial eligibility criteria by digital screening, leveraging natural language processing techniques, can improve recruitment efficiency and reduce the costs involved in promoting clinical research. Objective: We aimed to create a natural language processing model to automatically classify clinical trial eligibility criteria. Methods: We proposed a classifier for short text eligibility criteria based on ensemble learning, where a set of pretrained models was integrated. The pretrained models included state-of-the-art deep learning methods for training and classification, including Bidirectional Encoder Representations from Transformers (BERT), XLNet, and A Robustly Optimized BERT Pretraining Approach (RoBERTa). The classification results by the integrated models were combined as new features for training a Light Gradient Boosting Machine (LightGBM) model for eligibility criteria classification. Results: Our proposed method obtained an accuracy of 0.846, a precision of 0.803, and a recall of 0.817 on a standard data set from a shared task of an international conference. The macro F1 value was 0.807, outperforming the state-of-the-art baseline methods on the shared task. Conclusions: We designed a model for screening short text classification criteria for clinical trials based on multimodel ensemble learning. Through experiments, we concluded that performance was improved significantly with a model ensemble compared to a single model. The introduction of focal loss could reduce the impact of class imbalance to achieve better performance. %M 32609092 %R 10.2196/17832 %U https://medinform.jmir.org/2020/7/e17832 %U https://doi.org/10.2196/17832 %U http://www.ncbi.nlm.nih.gov/pubmed/32609092 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 8 %N 6 %P e15749 %T Applied Practice and Possible Leverage Points for Information Technology Support for Patient Screening in Clinical Trials: Qualitative Study %A Becker,Linda %A Ganslandt,Thomas %A Prokosch,Hans-Ulrich %A Newe,Axel %+ Chair of Medical Informatics, Friedrich-Alexander University Erlangen-Nürnberg, Wetterkreuz 13, Erlangen, 91058, Germany, 49 91318526720, axel.newe@fau.de %K clinical trial %K patient screening %K electronic support %K clinical information systems %K inclusion criteria %K exclusion criteria %K feasibility studies %K mobile phone %D 2020 %7 16.6.2020 %9 Original Paper %J JMIR Med Inform %G English %X Background: Clinical trials are one of the most challenging and meaningful designs in medical research. One essential step before starting a clinical trial is screening, that is, to identify patients who fulfill the inclusion criteria and do not fulfill the exclusion criteria. The screening step for clinical trials might be supported by modern information technology (IT). Objective: This explorative study aimed (1) to obtain insights into which tools for feasibility estimations and patient screening are actually used in clinical routine and (2) to determine which method and type of IT support could benefit clinical staff. Methods: Semistandardized interviews were conducted in 5 wards (cardiology, gynecology, gastroenterology, nephrology, and palliative care) in a German university hospital. Of the 5 interviewees, 4 were directly involved in patient screening. Three of them were clinicians, 1 was a study nurse, and 1 was a research assistant. Results: The existing state of study feasibility estimation and the screening procedure were dominated by human communication and estimations from memory, although there were many possibilities for IT support. Success mostly depended on the experience and personal motivation of the clinical staff. Electronic support has been used but with little importance so far. Searches in ward-specific patient registers (databases) and searches in clinical information systems were reported. Furthermore, free-text searches in medical reports were mentioned. For potential future applications, a preference for either proactive or passive systems was not expressed. Most of the interviewees saw the potential for the improvement of the actual systems, but they were also largely satisfied with the outcomes of the current approach. Most of the interviewees were interested in learning more about the various ways in which IT could support and relieve them in their clinical routine. Conclusions: Overall, IT support currently plays a minor role in the screening step for clinical trials. The lack of IT usage and the estimations made from memory reported by all the participants might constrain cognitive resources, which might distract from clinical routine. We conclude that electronic support for the screening step for clinical trials is still a challenge and that education of the staff about the possibilities for electronic support in clinical trials is necessary. %M 32442156 %R 10.2196/15749 %U http://medinform.jmir.org/2020/6/e15749/ %U https://doi.org/10.2196/15749 %U http://www.ncbi.nlm.nih.gov/pubmed/32442156 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 6 %P e17884 %T Prediction of (Non)Participation of Older People in Digital Health Research: Exergame Intervention Study %A Poli,Arianna %A Kelfve,Susanne %A Klompstra,Leonie %A Strömberg,Anna %A Jaarsma,Tiny %A Motel-Klingebiel,Andreas %+ Division Ageing and Social Change, Department of Culture and Society, Linköping University, Campus Norrköping, Bredgatan 33, Norrköping, 60174, Sweden, 46 700850634, arianna.poli@liu.se %K technology %K exclusion %K recruitment %K self-selection %K nonparticipation %D 2020 %7 5.6.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: The use of digital technologies is increasing in health care. However, studies evaluating digital health technologies can be characterized by selective nonparticipation of older people, although older people represent one of the main user groups of health care. Objective: We examined whether and how participation in an exergame intervention study was associated with age, gender, and heart failure (HF) symptom severity. Methods: A subset of data from the HF-Wii study was used. The data came from patients with HF in institutional settings in Germany, Italy, the Netherlands, and Sweden. Selective nonparticipation was examined as resulting from two processes: (non)recruitment and self-selection. Baseline information on age, gender, and New York Heart Association Functional Classification of 1632 patients with HF were the predictor variables. These patients were screened for HF-Wii study participation. Reasons for nonparticipation were evaluated. Results: Of the 1632 screened patients, 71% did not participate. The nonrecruitment rate was 21%, and based on the eligible sample, the refusal rate was 61%. Higher age was associated with lower probability of participation; it increased both the probabilities of not being recruited and declining to participate. More severe symptoms increased the likelihood of nonrecruitment. Gender had no effect. The most common reasons for nonrecruitment and self-selection were related to physical limitations and lack of time, respectively. Conclusions: Results indicate that selective nonparticipation takes place in digital health research and that it is associated with age and symptom severity. Gender effects cannot be proven. Such systematic selection can lead to biased research results that inappropriately inform research, policy, and practice. Trial Registration: ClinicalTrial.gov NCT01785121, https://clinicaltrials.gov/ct2/show/NCT01785121 %M 32501275 %R 10.2196/17884 %U http://www.jmir.org/2020/6/e17884/ %U https://doi.org/10.2196/17884 %U http://www.ncbi.nlm.nih.gov/pubmed/32501275 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 6 %P e17554 %T Facebook Recruitment Using Zip Codes to Improve Diversity in Health Research: Longitudinal Observational Study %A Pechmann,Cornelia %A Phillips,Connor %A Calder,Douglas %A Prochaska,Judith J %+ Paul Merage School of Business, University of California, Irvine, School of Business I, Irvine, CA, , United States, 1 949 824 4058, cpechman@uci.edu %K smoking %K advertisement %K social media %D 2020 %7 5.6.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Facebook’s advertising platform reaches most US households and has been used for health-related research recruitment. The platform allows for advertising segmentation by age, gender, and location; however, it does not explicitly allow for targeting by race or ethnicity to facilitate a diverse participant pool. Objective: This study looked at the efficacy of zip code targeting in Facebook advertising to reach blacks/African Americans and Hispanics/Latinos who smoke daily for a quit-smoking web-based social media study. Methods: We ran a general market campaign for 61 weeks using all continental US zip codes as a baseline. Concurrently, we ran 2 campaigns to reach black/African American and Hispanic-/Latino-identified adults, targeting zip codes ranked first by the percentage of households of the racial or ethnic group of interest and then by cigarette expenditure per household. We also ran a Spanish language campaign for 13 weeks, targeting all continental US zip codes but utilizing Facebook’s Spanish language targeting. The advertising images and language were common across campaigns. Costs were compared for advertisement clicks, queries, applications, and participants, and yields were compared for the final three outcomes. We examined outcomes before and after the Cambridge Analytica scandal that broke in March 2018. Finally, we examined 2 promoted Facebook features: lookalike audiences and audience network placement. Results: Zip code targeting campaigns were effective for yielding the racial or ethnic groups of interest. The black-/African American–focused versus general market campaign increased black/African American weekly queries (mean 9.48, SD 5.69 vs general market mean 2.83, SD 2.05; P<.001) and applicants (mean 1.11, SD 1.21 vs general market mean 0.54, SD 0.58; P<.001). The Hispanic-/Latino-focused versus general market campaign increased Hispanic/Latino weekly queries (mean 3.10, SD 2.16 vs general market mean 0.71, SD 0.48; P<.001) and applicants (mean 0.36, SD 0.55 vs general market mean 0.10, SD 0.14; P=.001). Cost metrics did not differ between campaigns at generating participants (overall P=.54). Costs increased post- versus prescandal for the black-/African American–focused campaign for queries (mean US $8.51, SD 3.08 vs US $5.87, SD 1.89; P=.001) and applicants (mean US $59.64, SD 35.63 vs US $38.96, SD 28.31; P=.004) and for the Hispanic-/Latino-focused campaign for queries (mean US $9.24, SD 4.74 vs US $7.04, SD 3.39; P=.005) and applicants (mean US $61.19, SD 40.08 vs US $38.19, SD 21.20; P=.001). Conclusions: Zip code targeting in Facebook advertising is an effective way to recruit diverse populations for health-based interventions. Audience network placement should be avoided. The Facebook lookalike audience may not be necessary for recruitment, with drawbacks including an unknown algorithm and unclear use of Facebook user data, and so public concerns around data privacy should be considered. Trial Registration: ClinicalTrial.gov NCT02823028; https://clinicaltrials.gov/ct2/show/NCT02823028 %M 32501274 %R 10.2196/17554 %U https://www.jmir.org/2020/6/e17554 %U https://doi.org/10.2196/17554 %U http://www.ncbi.nlm.nih.gov/pubmed/32501274 %0 Journal Article %@ 2152-7202 %I JMIR Publications %V 12 %N 2 %P e14062 %T Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel %A Bouras,Adam %A Simoes,Eduardo J %A Boren,Suzanne %A Hicks,Lanis %A Zachary,Iris %A Buck,Christoph %A Dhingra,Satvinder %A Ellis,Richard %+ Department of Health Management and Informatics, University of Missouri-Columbia, One Hospital Drive CSE 7474, Columbia, MO, United States, 1 5736398789, bourasm@health.missouri.edu %K surveys and questionnaires %K confidentiality %K electronic health records %K fitness trackers %K mobile applications %K logistic models %D 2020 %7 15.5.2020 %9 Original Paper %J J Participat Med %G English %X Background: Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. Objective: This study aimed to assess healthy non-Hispanic white mothers’ attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. Methods: This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers’ willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. Results: The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers’ health care provider status, their motivation, and their privacy concerns. Mothers’ concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers’ motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). Conclusions: The findings of this study suggest that mothers’ privacy concerns affect their decisions to share sensitive data. However, mothers’ access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data. %M 33064096 %R 10.2196/14062 %U http://jopm.jmir.org/2020/2/e14062/ %U https://doi.org/10.2196/14062 %U http://www.ncbi.nlm.nih.gov/pubmed/33064096 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 6 %N 2 %P e15079 %T Recommendations From a Descriptive Evaluation to Improve Screening Procedures for Web-Based Studies With Couples: Cross-Sectional Study %A Mitchell,Jason W %A Chavanduka,Tanaka M D %A Sullivan,Stephen %A Stephenson,Rob %+ Office of Public Health Studies, Myron B Thompson School of Social Work, University of Hawai’i at Mānoa, 1960 East-West Road, Biomed T110, Honolulu, HI, 96822, United States, 1 808 956 3342, jasonmit@hawaii.edu %K couples %K methods %K internet %D 2020 %7 12.5.2020 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Although there are a number of advantages to using the internet to recruit and enroll participants into Web-based research studies, these advantages hinge on data validity. In response to this concern, researchers have provided recommendations for how best to screen for fraudulent survey entries and to handle potentially invalid responses. Yet, the majority of this previous work focuses on screening (ie, verification that individual met the inclusion criteria) and validating data from 1 individual, and not from 2 people who are in a dyadic relationship with one another (eg, same-sex male couple; mother and daughter). Although many of the same data validation and screening recommendations for Web-based studies with individual participants can be used with dyads, there are differences and challenges that need to be considered. Objective: This paper aimed to describe the methods used to verify and validate couples’ relationships and data from a Web-based research study, as well as the associated lessons learned for application toward future Web-based studies involving the screening and enrollment of couples with dyadic data collection. Methods: We conducted a descriptive evaluation of the procedures and associated benchmarks (ie, decision rules) used to verify couples’ relationships and validate whether data uniquely came from each partner of the couple. Data came from a large convenience sample of same-sex male couples in the United States, who were recruited through social media venues for a Web-based, mixed methods HIV prevention research study. Results: Among the 3815 individuals who initiated eligibility screening, 1536 paired individuals (ie, data from both partners of a dyad) were assessed for relationship verification; all passed this benchmark. For data validation, 450 paired individuals (225 dyads) were identified as fraudulent and failed this benchmark, resulting in a total sample size of 1086 paired participants representing 543 same-sex male couples who were enrolled. The lessons learned from the procedures used to screen couples for this Web-based research study have led us to identify and describe four areas that warrant careful attention: (1) creation of new and replacement of certain relationship verification items, (2) identification of resources needed relative to using a manual or electronic approach for screening, (3) examination of approaches to link and identify both partners of the couple, and (4) handling of bots. Conclusions: The screening items and associated rules used to verify and validate couples’ relationships and data worked yet required extensive resources to implement. New or updating some items to verify a couple’s relationship may be beneficial for future studies. The procedures used to link and identify whether both partners were coupled also worked, yet they call into question whether new approaches are possible to help increase linkage, suggesting the need for further inquiry. %M 32396133 %R 10.2196/15079 %U http://publichealth.jmir.org/2020/2/e15079/ %U https://doi.org/10.2196/15079 %U http://www.ncbi.nlm.nih.gov/pubmed/32396133 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 4 %P e16370 %T Feasibility of Social Media–Based Recruitment and Perceived Acceptability of Digital Health Interventions for Caregivers of Justice-Involved Youth: Mixed Methods Study %A Folk,Johanna Bailey %A Harrison,Anna %A Rodriguez,Christopher %A Wallace,Amanda %A Tolou-Shams,Marina %+ Department of Psychiatry, University of California, 1001 Potrero Avenue, San Francisco, CA, 94110, United States, 1 6282062309, Johanna.folk@ucsf.edu %K caregivers %K telemedicine %K mobile health %K juvenile delinquency %K social media %D 2020 %7 30.4.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Caregiver involvement is critical for supporting positive behavioral health and legal outcomes for justice-involved youth; however, recruiting this population into clinical research studies and engaging them in treatment remain challenging. Technology-based approaches are a promising, yet understudied avenue for recruiting and intervening with caregivers of justice-involved youth. Objective: This mixed methods study aimed to assess the feasibility of recruiting caregivers of justice-involved youth using social media into clinical research and to understand caregivers’ perceptions of the acceptability of digital health interventions. Methods: Caregivers of justice-involved youth were recruited through paid Facebook advertisements to participate in a Web-based survey. Advertisement design was determined using Facebook A/B split testing, and the advertisement with the lowest cost per link click was used for the primary advertisement campaign. Survey participants were offered the option to participate in a follow-up qualitative phone interview focused on the perceived feasibility and acceptability of digital health interventions. Results: Facebook advertisements were successful in quickly recruiting a diverse set of caregivers (80/153, 52.3% female; mean age 43 years, SD 7; 76/168, 45.2% black, 34/168, 20.2% white, and 28/168, 16.7% Latinx; and 97/156, 62.2% biological parents); cost per click was US $0.53, and conversion rate was 11.5%. Survey participants used multiple social media platforms; 60.1% (101/168) of the participants indicated they would participate in a digital health intervention for caregivers of justice-involved youth. Survey respondents’ most preferred intervention was supportive and motivational parenting messages via SMS text message. Of the survey respondents, 18 completed a phone interview (12/18, 67% female; mean age 45 years, SD 10; 10/18, 56% black, 7/18, 39% white, and 1/18, 6% Latinx; and 16/18, 89% biological parents). Interview participant responses suggested digital health interventions are acceptable, but they expressed both likes (eg, alleviates barriers to treatment access) and concerns (eg, privacy); their most preferred intervention was video-based family therapy. Conclusions: Recruiting and intervening with caregivers of justice-involved youth through social media and other digital health approaches may be a feasible and acceptable approach to overcoming barriers to accessing traditional in-person behavioral health care. %M 32352388 %R 10.2196/16370 %U http://www.jmir.org/2020/4/e16370/ %U https://doi.org/10.2196/16370 %U http://www.ncbi.nlm.nih.gov/pubmed/32352388 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 9 %N 4 %P e16108 %T Monitoring Health and Well-Being in Emerging Adults: Protocol for a Pilot Longitudinal Cohort Study %A Lystad,Reidar P %A Fajardo Pulido,Diana %A Peters,Lorna %A Johnstone,Melissa %A Ellis,Louise A %A Braithwaite,Jeffrey %A Wuthrich,Viviana %A Amin,Janaki %A Cameron,Cate M %A Mitchell,Rebecca J %+ Australian Institute of Health Innovation, Macquarie University, 75 Talavera Road, Sydney, 2109, Australia, 61 298502464, reidar.lystad@mq.edu.au %K young adults %K emerging adulthood %K health %K well-being %K health-related quality of life %D 2020 %7 23.4.2020 %9 Protocol %J JMIR Res Protoc %G English %X Background: Emerging adulthood is a unique segment of an individual’s life course. The defining features of this transitional period include identity exploration, instability, future possibilities, self-focus, and feeling in-between adolescence and adulthood, all of which are thought to affect quality of life, health, and well-being. A longitudinal cohort study with a comprehensive set of measures would be a unique and valuable resource for improving the understanding of the multi-faceted elements and unique challenges that contribute to the health and well-being of emerging adults. Objective: The main aim of this pilot study is to evaluate the feasibility and acceptability of recruiting university graduates to establish a longitudinal cohort study to inform our understanding of emerging adulthood. Methods: This is a pilot longitudinal cohort study of Australian university graduates. It will involve collecting information via online surveys (baseline and 12-month follow-up) and data linkage with health records. Recruitment, response, and retention rates will be calculated. Descriptive analysis of the representativeness of recruited participants and completeness of survey responses will be conducted. Results: Participant recruitment was completed in October 2018, and data collection for the baseline and follow-up surveys was completed in November 2019. As of April 2020, the process of acquiring health records from administrative data collections has commenced. Conclusions: The findings from this pilot study will identify areas for improvement and inform the development of a future longitudinal cohort study of emerging adults. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12618001364268; https://tinyurl.com/teec8wh International Registered Report Identifier (IRRID): DERR1-10.2196/16108 %M 32324142 %R 10.2196/16108 %U http://www.researchprotocols.org/2020/4/e16108/ %U https://doi.org/10.2196/16108 %U http://www.ncbi.nlm.nih.gov/pubmed/32324142 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 6 %N 1 %P e14476 %T Facilitators and Barriers to Recruiting Ambulatory Oncology Practices Into a Large Multisite Study: Mixed Methods Study %A Manojlovich,Milisa %A Bedard,Louise %A Griggs,Jennifer J %A McBratnie,Michaella %A Mendelsohn-Victor,Kari %A Friese,Christopher R %+ School of Nursing, University of Michigan, 400 N. Ingalls, Room 4306, Ann Arbor, MI, 48109, United States, 1 734 936 3055, mmanojlo@umich.edu %K recruitment activities %K ambulatory care facilities %K health services research %D 2020 %7 20.4.2020 %9 Original Paper %J JMIR Cancer %G English %X Background: Practice-based research is essential to generate the data necessary to understand outcomes in ambulatory oncology care. Although there is an increased interest in studying ambulatory oncology care, given the rising patient volumes and complexity in those settings, little guidance is available on how best to recruit ambulatory oncology practices for research. Objective: This paper aimed to describe the facilitators and barriers to recruiting ambulatory oncology practices into a large multisite study. Methods: Using a mixed methods design, we sought to recruit 52 ambulatory oncology practices that have participated in a state-wide quality improvement collaborative for the quantitative phase. We used 4 domains of the Consolidated Framework for Implementation Research (CFIR) to describe facilitators and barriers to recruitment. Results: We successfully recruited 28 of the 52 collaborative-affiliated practices, collecting survey data from 2223 patients and 297 clinicians. Intervention attributes included multimodal outreach and training activities to assure high fidelity to the data collection protocol. The implementation process was enhanced through interactive training and practice-assigned champions responsible for data collection. External context attributes that facilitated practice recruitment included partnership with a quality improvement collaborative and the inclusion of a staff member from the collaborative in our team. Key opinion leaders within each practice who could identify challenges to participation and propose flexible solutions represented internal context attributes. We also reported lessons learned during the recruitment process, which included navigating diverse approaches to human subjects protection policies and understanding that recruitment could be a negotiated process that took longer than anticipated, among others. Conclusions: Our experience provides other researchers with challenges to anticipate and possible solutions for common issues. Using the CFIR as a guide, we identified numerous recruitment barriers and facilitators and devised strategies to enhance recruitment efforts. In conclusion, researchers and clinicians can partner effectively to design and implement research protocols that ultimately benefit patients who are increasingly seeking care in ambulatory practices. %M 32310140 %R 10.2196/14476 %U http://cancer.jmir.org/2020/1/e14476/ %U https://doi.org/10.2196/14476 %U http://www.ncbi.nlm.nih.gov/pubmed/32310140 %0 Journal Article %@ 2368-7959 %I JMIR Publications %V 7 %N 4 %P e16398 %T A Web- and Mobile-Based Intervention for Comorbid, Recurrent Depression in Patients With Chronic Back Pain on Sick Leave (Get.Back): Pilot Randomized Controlled Trial on Feasibility, User Satisfaction, and Effectiveness %A Schlicker,Sandra %A Baumeister,Harald %A Buntrock,Claudia %A Sander,Lasse %A Paganini,Sarah %A Lin,Jiaxi %A Berking,Matthias %A Lehr,Dirk %A Ebert,David Daniel %+ Department of Clinical Psychology and Psychotherapy, Friedrich-Alexander-University Erlangen-Nürnberg, Nägelsbachstraße 25a, Erlangen, 91052, Germany, 49 91318567564, Sandra.Schlicker@fau.de %K pilot project %K low back pain %K depressive disorder %K mental health %K sick leave %D 2020 %7 15.4.2020 %9 Original Paper %J JMIR Ment Health %G English %X Background: Chronic back pain (CBP) is linked to a higher prevalence and higher occurrence of major depressive disorder (MDD) and can lead to reduced quality of life. Unfortunately, individuals with both CBP and recurrent MDD are underidentified. Utilizing health care insurance data may provide a possibility to better identify this complex population. In addition, internet- and mobile-based interventions might enhance the availability of existing treatments and provide help to those highly burdened individuals. Objective: This pilot randomized controlled trial investigated the feasibility of recruitment via the health records of a German health insurance company. The study also examined user satisfaction and effectiveness of a 9-week cognitive behavioral therapy and Web- and mobile-based guided self-help intervention Get.Back in CBP patients with recurrent MDD on sick leave compared with a waitlist control condition. Methods: Health records from a German health insurance company were used to identify and recruit participants (N=76) via invitation letters. Study outcomes were measured using Web-based self-report assessments at baseline, posttreatment (9 weeks), and a 6-month follow-up. The primary outcome was depressive symptom severity (Center for Epidemiological Studies–Depression); secondary outcomes included anxiety (Hamilton Anxiety and Depression Scale), quality of life (Assessment of Quality of Life), pain-related variables (Oswestry Disability Index, Pain Self-Efficacy Questionnaire, and pain intensity), and negative effects (Inventory for the Assessment of Negative Effects of Psychotherapy). Results: The total enrollment rate with the recruitment strategy used was 1.26% (76/6000). Participants completed 4.8 modules (SD 2.6, range 0-7) of Get.Back. The overall user satisfaction was favorable (mean Client Satisfaction Questionnaire score=24.5, SD 5.2). Covariance analyses showed a small but statistically significant reduction in depressive symptom severity in the intervention group (n=40) at posttreatment compared with the waitlist control group (n=36; F1,76=3.62, P=.03; d=0.28, 95% CI −0.17 to 0.74). Similar findings were noted for the reduction of anxiety symptoms (F1,76=10.45; P=.001; d=0.14, 95% CI −0.31 to 0.60) at posttreatment. Other secondary outcomes were nonsignificant (.06≤P≤.44). At the 6-month follow-up, the difference between the groups with regard to reduction in depressive symptom severity was no longer statistically significant (F1,76=1.50, P=.11; d=0.10, 95% CI −0.34 to 0.46). The between-group difference in anxiety at posttreatment was maintained to follow-up (F1,76=2.94, P=.04; d=0.38, 95% CI −0.07 to 0.83). There were no statistically significant differences across groups regarding other secondary outcomes at the 6-month follow-up (.08≤P≤.42). Conclusions: These results suggest that participants with comorbid depression and CBP on sick leave may benefit from internet- and mobile-based interventions, as exemplified with the positive user satisfaction ratings. The recruitment strategy via health insurance letter invitations appeared feasible, but more research is needed to understand how response rates in untreated individuals with CBP and comorbid depression can be increased. Trial Registration: German Clinical Trials Register DRKS00010820; https://www.drks.de/drks_web/navigate.do? navigationId=trial.HTML&TRIAL_ID=DRKS00010820. %M 32293577 %R 10.2196/16398 %U http://mental.jmir.org/2020/4/e16398/ %U https://doi.org/10.2196/16398 %U http://www.ncbi.nlm.nih.gov/pubmed/32293577 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 4 %N 4 %P e14747 %T Interventions to Increase the Reachability of Migrants in Germany With Health Interview Surveys: Mixed-Mode Feasibility Study %A Zeisler,Marie-Luise %A Bilgic,Leman %A Schumann,Maria %A Wengler,Annelene %A Lemcke,Johannes %A Gößwald,Antje %A Lampert,Thomas %A Santos-Hövener,Claudia %A Schmich,Patrick %+ Robert Koch Institute, Berlin, Germany, 49 30 18754 3694, ZeislerM@rki.de %K transients and migrants %K surveys and questionnaires %K cross-sectional studies %K feasibility studies %K multilingualism and health monitoring %D 2020 %7 15.4.2020 %9 Original Paper %J JMIR Form Res %G English %X Background: Germany is a popular destination for immigrants, and migration has increased in recent years. It is therefore important to collect reliable data on migrants’ health. The Robert Koch Institute, Berlin, Germany, has launched the Improving Health Monitoring in Migrant Populations (IMIRA) project to sustainably integrate migrant populations into health monitoring in Germany. Objective: One of IMIRA’s objectives is to implement a feasibility study (the IMIRA survey) that focuses on testing various interventions to increase the reachability of migrants with health interview surveys. Possible causes of nonresponse should be identified so as to increase participation in future surveys. Methods: The survey target populations were Turkish, Polish, Romanian, Syrian, and Croatian migrants, who represent the biggest migrant groups living in Germany. We used probability sampling, using data from the registration offices in 2 states (Berlin and Brandenburg); we randomly selected 9068 persons by nationality in 7 sample points. We applied age (3 categories: 18-44, 45-64, and ≥65 years) and sex strata. Modes and methods used to test their usability were culturally sensitive materials, online questionnaires, telephone interviews, personal contact, and personal interviews, using multilingual materials and interviewers. To evaluate the effectiveness of the interventions, we used an intervention group (group A) and a control group (group B). There were also focus groups with the interviewers to get more information about the participants’ motivation. We used the European Health Interview Survey, with additional instruments on religious affiliation, experience of discrimination, and subjective social status. We evaluated results according to their final contact result (disposition code). Results: We collected data from January to May 2018 in Berlin and Brandenburg, Germany. The survey had an overall response rate of 15.88% (1190/7494). However, final disposition codes varied greatly with regard to citizenship. In addition to the quantitative results, interviewers reported in the focus groups a “feeling of connectedness” to the participants due to the multilingual interventions. The interviewers were particularly positive about the home visits, because “if you are standing at the front door, you will be let in for sure.” Conclusions: The IMIRA survey appraised the usability of mixed-mode or mixed-method approaches among migrant groups with a probability sample in 2 German states. When conducting the survey, we were confronted with issues regarding the translation of the questionnaire, as well as the validity of some instruments in the survey languages. A major result was that personal face-to-face contact was the most effective intervention to recruit our participants. We will implement the findings in the upcoming health monitoring study at the Robert Koch Institute. %M 32305950 %R 10.2196/14747 %U https://formative.jmir.org/2020/4/e14747 %U https://doi.org/10.2196/14747 %U http://www.ncbi.nlm.nih.gov/pubmed/32305950 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 4 %P e16680 %T Use of Telephone and Digital Channels to Engage Socioeconomically Disadvantaged Adults in Health Disparities Research Within a Social Service Setting: Cross-Sectional Study %A Alcaraz,Kassandra I %A Vereen,Rhyan N %A Burnham,Donna %+ Behavioral and Epidemiology Research Group, American Cancer Society, 250 Williams Street NW, Atlanta, GA, 30303, United States, 1 4044178019, kassandra.alcaraz@cancer.org %K cross-sectional studies %K electronic mail %K health status disparities %K health care disparities %K internet %K mobile phone %K telephone %K text messaging %K social services %D 2020 %7 1.4.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Engaging socioeconomically disadvantaged populations in health research is vital to understanding and, ultimately, eliminating health-related disparities. Digital communication channels are increasingly used to recruit study participants, and recent trends indicate a growing need to partner with the social service sector to improve population health. However, few studies have recruited participants from social service settings using multiple digital channels. Objective: This study aimed to recruit and survey 3791 adult clients of a social service organization via telephone and digital channels. This paper aimed to describe recruitment outcomes across five channels and compare participant characteristics by recruitment channel type. Methods: The Cancer Communication Channels in Context Study recruited and surveyed adult clients of 2-1-1, a social service–focused information and referral system, using five channels: telephone, website, text message, web-based live chat, and email. Participants completed surveys administered either by phone (if recruited by phone) or on the web (if recruited from digital channels, ie, website, text message, Web-based live chat, or email). Measures for the current analysis included demographic and health characteristics. Results: A total of 3293 participants were recruited, with 1907 recruited by phone and 1386 recruited from digital channels. Those recruited by phone had a moderate study eligibility rate (42.23%) and the highest survey completion rate (91.24%) of all channels. Individuals recruited by text message had a high study eligibility rate (94.14%) yet the lowest survey completion rate (74.0%) of all channels. Sample accrual goals were achieved for phone, text message, and website recruitment. Multivariable analyses found differences in participant characteristics by recruitment channel type. Compared with participants recruited by phone, those recruited from digital channels were younger (adjusted odds ratio [aOR] 0.96, 95% CI 0.96-0.97) and more likely to be female (aOR 1.52, 95% CI 1.23-1.88), married (aOR 1.52, 95% CI 1.22-1.89), and other than non-Hispanic black (aOR 1.48, 95% CI 1.22-1.79). Those recruited via phone also were more likely to have more than a high school education (aOR 2.17, 95% CI 1.67-2.82), have a household income ≥US $25,000 a year (aOR 2.02, 95% CI 1.56-2.61), and have children living in the home (aOR 1.26, 95% CI 1.06-1.51). Additionally, participants recruited from digital channels were less likely than those recruited by phone to have public health insurance (aOR 0.75, 95% CI 0.62-0.90) and more likely to report better overall health (aOR 1.52, 95% CI 1.27-1.83 for good-to-excellent health). Conclusions: Findings indicate the feasibility and utility of recruiting socioeconomically disadvantaged adults from the social service sector using multiple communication channels, including digital channels. As social service–based health research evolves, strategic recruitment using a combination of traditional and digital channels may be warranted to avoid underrepresentation of highly medically vulnerable individuals, which could exacerbate disparities in health. %M 32234699 %R 10.2196/16680 %U https://www.jmir.org/2020/4/e16680 %U https://doi.org/10.2196/16680 %U http://www.ncbi.nlm.nih.gov/pubmed/32234699 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 22 %N 1 %P e16027 %T The Impact of Advertisement Messaging on Enrollment of Young Men Who Have Sex With Men for Web-Based Research: Observational Study %A Fontenot,Holly B %A Abuelezam,Nadia N %A Rosenberger,Joshua G %A Novak,David %A Mayer,Kenneth H %A Zimet,Gregory %+ Connell School of Nursing, Boston College, 140 Commonwealth Ave, Chestnut Hill, MA, 02467, United States, 1 617 552 1846, holly.fontenot@bc.edu %K advertisement %K men %K sexual minorities %D 2020 %7 13.1.2020 %9 Original Paper %J J Med Internet Res %G English %X Background: Recruiting young men who have sex with men (YMSM) in community settings is difficult. The use of Web-based social networks and dating apps for recruitment can be successful approaches, although little work has been done on the impact of study advertisement content on recruitment. Objective: The aim of this study was to evaluate the effects of advertisement message content on the recruitment of YMSM (aged 18-26 years) for a Web-based focus group study, examining perspectives and preferences for a mobile app that was designed to support sexual health among YMSM. Methods: Between March and April 2017, a recruitment campaign to promote human papillomavirus vaccination was launched on a popular social networking and dating app for YMSM, with 3 different text-based advertisement themes (technology, cancer prevention, and sexual innuendo). The campaign recruited YMSM across 3 states (Massachusetts, New York, and Pennsylvania). We examined the click-through rates, conversion rates, and enrollment rates of each of the advertisements and examined differences in views and clicks by age, state, and time of day. Results: The sexual innuendo advertisement had the highest click rates when compared with both the technology (click rate ratio [CRR] 2.06, 95% CI 1.74-2.45) and cancer prevention (CRR 1.62, 95% CI 1.38-1.90) advertisements. The sexual innuendo advertisement also had higher study enrollment rates compared with the technology (CRR 1.90, 95% CI 1.23-2.83) and cancer prevention (CRR 2.06, 95% CI 1.37-3.13) advertisements. No differences were observed in clicks or enrollment by age, state, or time of day. Conclusions: Our marketing campaign, targeting YMSM, was effective in recruiting participants for a qualitative study, using Web-based focus groups. The sexual innuendo advertisement was the most effective and cost-efficient advertisement of the 3 approaches trialed. Different populations need different targeted strategies for study recruitment. Researchers should work with key representatives to develop and test culturally relevant messaging and approaches that utilize current and popular technologies. %M 31929103 %R 10.2196/16027 %U https://www.jmir.org/2020/1/e16027 %U https://doi.org/10.2196/16027 %U http://www.ncbi.nlm.nih.gov/pubmed/31929103 %0 Journal Article %@ 2561-326X %I JMIR Publications %V 3 %N 4 %P e13854 %T Beliefs Related to Participation in a Large Web-Based Prospective Survey on Diet and Health Among Individuals With a Low Socioeconomic Status: Qualitative Study %A Côté,Mélina %A Lapointe,Annie %A Laramée,Catherine %A Lemieux,Simone %A Desroches,Sophie %A Belanger-Gravel,Ariane %A Lamarche,Benoît %+ Centre Nutrition, Santé, et Société, Institute of Nutrition and Functional Foods, Université Laval, 2440 Hochelaga Boulevard, Québec, QC, G1V 0A6, Canada, 1 418 656 2131 ext 404355, benoit.lamarche@fsaa.ulaval.ca %K focus groups %K qualitative research %K social class %K research subject %K retention %D 2019 %7 10.12.2019 %9 Original Paper %J JMIR Form Res %G English %X Background: NutriQuébec is a Web-based prospective study on the relationship between diet and health as well as the impact of food-related health policies in the adult population of Québec, Canada. Recruitment and retention of individuals with a low socioeconomic status (SES) in such a study are known to be challenging, yet critical for achieving representativeness of the entire population. Objective: This study aimed to identify the behavioral, normative, and control beliefs of individuals with a low SES regarding participation in the NutriQuébec project and to identify their preferences regarding recruitment methods. Methods: A total of four focus groups were conducted in community centers located in low-income areas of Québec City, Canada. On the basis of the theory of planned behavior, participants’ beliefs associated with attitude, subjective norm, and perceived behavioral control regarding hypothetical participation in the NutriQuébec project were identified. Focus groups were recorded, transcribed, and coded by two analysts. Results: Participants (16 men and 12 women) were aged between 28 and 72 years, and a majority of the participants had an annual household income of Can $19,999 or less. The main perceived advantages of participating in the NutriQuébec project were contributing to improved collective health and supporting research. The only disadvantage identified was the risk of having to fill out too many questionnaires. Participants could not, in general, identify persons from their entourage who would approve or disapprove their participation in the study. The main facilitators identified were obtaining a brief health assessment and the ability to complete questionnaires in a way that is not Web-based. The main barrier was the lack of internet access. The preferred means of recruitment were through social media, television, and community centers. Conclusions: These results provide insightful information regarding the best methods and messages to use in order to recruit and retain individuals with a low SES in a population-based prospective study on lifestyle and health on the internet. %M 31821149 %R 10.2196/13854 %U http://formative.jmir.org/2019/4/e13854/ %U https://doi.org/10.2196/13854 %U http://www.ncbi.nlm.nih.gov/pubmed/31821149 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 5 %N 4 %P e14886 %T Social Media Recruitment of Marginalized, Hard-to-Reach Populations: Development of Recruitment and Monitoring Guidelines %A Russomanno,Jennifer %A Patterson,Joanne G %A Jabson Tree,Jennifer M %+ Department of Public Health, University of Tennessee, 1914 Andy Holt Ave, 390 HPER, Knoxville, TN, United States, 1 865 305 9190, jrussoma@utk.edu %K transgender %K LGBTQ %K TGNC %K marginalized populations %K cyberbullying %K engagement %K compassion fatigue %K human subjects %K research protections %K adverse events %D 2019 %7 2.12.2019 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: Social media can be a useful strategy for recruiting hard-to-reach, stigmatized populations into research studies; however, it may also introduce risks for participant and research team exposure to negative comments. Currently, there is no published formal social media recruitment and monitoring guidelines that specifically address harm reduction for social media recruitment of marginalized populations. Objective: The purpose of this research study was to investigate the utility, successes, challenges, and positive and negative consequences of using targeted Facebook advertisements as a strategy to recruit transgender and gender nonconforming (TGNC) people into a research study. Methods: TGNC adults living in the Southeast Unites States were recruited via targeted Facebook advertisements over two cycles in April and June 2017. During cycle 1, researchers only used inclusion terms to recruit the target population. During cycle 2, the social media recruitment and monitoring protocol and inclusion and exclusion terms were used. Results: The cycle 1 advertisement reached 8518 people and had 188 reactions, comments, and shares but produced cyberbullying, including discriminatory comments from Facebook members. Cycle 2 reached fewer people (6976) and received 166 reactions, comments, and shares but produced mostly positive comments. Conclusions: Researchers must consider potential harms of using targeted Facebook advertisements to recruit hard-to-reach and stigmatized populations. To minimize harm to participants and research staff, researchers must preemptively implement detailed social media recruitment and monitoring guidelines for monitoring and responding to negative feedback on targeted Facebook advertisements. %M 31789598 %R 10.2196/14886 %U http://publichealth.jmir.org/2019/4/e14886/ %U https://doi.org/10.2196/14886 %U http://www.ncbi.nlm.nih.gov/pubmed/31789598 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e15869 %T Cost and Effectiveness of Using Facebook Advertising to Recruit Young Women for Research: PREFER (Contraceptive Preferences Study) Experience %A McCarthy,Edwina %A Mazza,Danielle %+ Department of General Practice, School of Primary and Allied Health Care, Monash University, Building 1, 270 Ferntree Gully Rd, Notting Hill, Melbourne, 3168, Australia, 61 399024512, Danielle.mazza@monash.edu %K social media %K Facebook %K recruitment %K intervention study %K patient education %K internet %D 2019 %7 29.11.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Social media is a popular and convenient method for communicating on the Web. The most commonly used social networking website, Facebook, is increasingly being used as a tool for recruiting research participants because of its large user base and its ability to target advertisements on the basis of Facebook users’ information. Objective: We evaluated the cost and effectiveness of using Facebook to recruit young women into a Web-based intervention study (PREFER). The PREFER study aimed to determine whether an educational video could increase preference for and uptake of long-acting reversible contraception (LARC). Methods: We placed an advertisement on Facebook over a 19-day period from December 2017 to January 2018, inviting 16- to 25-year-old women from Australia to participate in a Web-based study about contraception. Those who clicked on the advertisement were directed to project information, and their eligibility was determined by using a screening survey. Results: Our Facebook advertisement delivered 130,129 impressions, resulting in over 2000 clicks at an overall cost of Aus $918 (Aus $0.44 per click). Web-based project information was accessed by 493 women. Of these, 462 women completed the screening survey, and 437 (437/463, 95%) women were eligible. A total of 322 young women participated in Surveys 1 and 2 (74% response rate), and 284 women participated in Survey 3 (88% retention rate), with an advertising cost of Aus $2.85 per consenting participant. Conclusions: Facebook proved to be a quick, effective, and cost-efficient tool for recruiting young Australian women into a study that was investigating contraceptive preferences. However, Web-based recruitment may result in sociodemographic biases. Further research is required to evaluate whether Facebook is suitable for recruiting older study populations. %M 31782738 %R 10.2196/15869 %U http://www.jmir.org/2019/11/e15869/ %U https://doi.org/10.2196/15869 %U http://www.ncbi.nlm.nih.gov/pubmed/31782738 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e14911 %T Cost Per Participant Recruited From Rural and Remote Areas Into a Smoking Cessation Trial Via Online or Traditional Strategies: Observational Study %A Byaruhanga,Judith %A Tzelepis,Flora %A Paul,Christine %A Wiggers,John %A Byrnes,Emma %A Lecathelinais,Christophe %+ University of Newcastle, University Drive, Callaghan, 2308, Australia, 61 2 4924 6454, judith.byaruhanga@uon.edu.au %K smoking cessation %K tobacco use %K rural population %D 2019 %7 12.11.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Rural and remote residents are more likely to smoke than those who live in major cities; however, recruitment of research participants from rural and remote areas can be challenging. The cost per participant recruited from rural and remote areas via online (eg, social media) and traditional strategies (eg, print) has implications for researchers on how to allocate resources to maximize the number of participants recruited. Participant characteristics such as demographics, financial stress, mental health, and smoking-related factors may be associated with recruitment method (ie, online vs traditional), and so it is important to understand whether certain subgroups are more likely to be recruited via a particular strategy. Objective: This study aimed to determine the cost per participant recruited and examine whether characteristics such as demographics, financial stress, mental health, and smoking-related factors may be associated with the recruitment method (ie, online vs traditional). Methods: Participants were recruited into a randomized trial that provided smoking cessation support. Eligible participants were aged 18 years or older; used tobacco daily; had access to video communication software, internet, and telephone; had an email address; and lived in a rural or remote area of New South Wales, Australia. This study describes the natural (observed) experience of recruiting participants via online and traditional methods into a smoking cessation trial. Results: Over 17 months, 655 participants were recruited into the smoking cessation trial. A total of 88.7% (581/655) of the participants were recruited via online methods. Moreover, 1.8% (12/655) of the participants were recruited from remote locations and none from very remote areas. The cost per participant recruited by the various online strategies ranged from Aus $7.29 (US $4.96, £4.09, and €4.43) for Gumtree, a local online classified website, to Aus $128.67 (US $87.63, £72.20, and €78.28) for email. The cost per participant recruited using traditional strategies ranged from Aus $0 (US $0, £0, and €0) for word of mouth to Aus $3990.84 (US $2757.67, £2227.85, and €2477.11) for telephone. Women had greater odds of being recruited via online methods than men (odds ratio 2.50, 95% CI 1.42-4.40). No other characteristics were associated with the recruitment method. Conclusions: The cost per participant recruited via online and traditional strategies varied, with the range being smaller for online than traditional recruitment strategies. Women have greater odds of being recruited via online strategies into rural smoking cessation trials. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12617000514303; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372584&isReview=true %M 31714253 %R 10.2196/14911 %U https://www.jmir.org/2019/11/e14911 %U https://doi.org/10.2196/14911 %U http://www.ncbi.nlm.nih.gov/pubmed/31714253 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 11 %P e14421 %T Attracting Users to Online Health Communities: Analysis of LungCancer.net’s Facebook Advertisement Campaign Data %A Horrell,Lindsey N %A Lazard,Allison J %A Bhowmick,Amrita %A Hayes,Sara %A Mees,Susan %A Valle,Carmina G %+ Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, 170 Rosenau Hall, CB #7400, Chapel Hill, NC, United States, 1 502 644 7597, horrell@email.unc.edu %K internet %K health communication %K social media %K health promotion %K health education %D 2019 %7 4.11.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: With growing numbers of adults turning to the internet to get answers for health-related questions, online communities provide platforms with participatory networks to deliver health information and social support. However, to optimize the benefits of these online communities, these platforms must market effectively to attract new members and promote community growth. Objective: The aim of this study was to assess the engagement results of Facebook advertisements designed to increase membership in the LungCancer.net online community. Methods: In the fall of 2017, a series of 5 weeklong Facebook advertisement campaigns were launched targeting adults over the age of 18 years with an interest in lung cancer to increase opt ins to the LungCancer.net community (ie, the number of people who provided their email to join the site). Results: The advertisements released during this campaign had a sum reach of 91,835 people, and 863 new members opted into the LungCancer.net community by providing their email address. Females aged 55 to 64 years were the largest population reached by the campaign (31,401/91,835; 34.29%), whereas females aged 65 and older were the largest population who opted into the LungCancer.net community (307/863; 35.57%). A total of US $1742 was invested in the Facebook campaigns, and 863 people opted into LungCancer.net, resulting in a cost of US $2.02 per new member. Conclusions: This research demonstrates the feasibility of using Facebook advertising to promote and grow online health communities. More research is needed to compare the effectiveness of various advertising approaches. Public health professionals should consider Facebook campaigns to effectively connect intended audiences to health information and support. %M 31682589 %R 10.2196/14421 %U https://www.jmir.org/2019/11/e14421 %U https://doi.org/10.2196/14421 %U http://www.ncbi.nlm.nih.gov/pubmed/31682589 %0 Journal Article %@ 2291-9694 %I JMIR Publications %V 7 %N 4 %P e15980 %T Cohort Selection for Clinical Trials From Longitudinal Patient Records: Text Mining Approach %A Spasic,Irena %A Krzeminski,Dominik %A Corcoran,Padraig %A Balinsky,Alexander %+ School of Computer Science & Informatics, Cardiff University, 5 The Parade, Cardiff, CF24 3AA, United Kingdom, 44 02920870320, spasici@cardiff.ac.uk %K natural language processing %K machine learning %K electronic medical records %K clinical trial %K eligibility determination %D 2019 %7 31.10.2019 %9 Original Paper %J JMIR Med Inform %G English %X Background: Clinical trials are an important step in introducing new interventions into clinical practice by generating data on their safety and efficacy. Clinical trials need to ensure that participants are similar so that the findings can be attributed to the interventions studied and not to some other factors. Therefore, each clinical trial defines eligibility criteria, which describe characteristics that must be shared by the participants. Unfortunately, the complexities of eligibility criteria may not allow them to be translated directly into readily executable database queries. Instead, they may require careful analysis of the narrative sections of medical records. Manual screening of medical records is time consuming, thus negatively affecting the timeliness of the recruitment process. Objective: Track 1 of the 2018 National Natural Language Processing Clinical Challenge focused on the task of cohort selection for clinical trials, aiming to answer the following question: Can natural language processing be applied to narrative medical records to identify patients who meet eligibility criteria for clinical trials? The task required the participating systems to analyze longitudinal patient records to determine if the corresponding patients met the given eligibility criteria. We aimed to describe a system developed to address this task. Methods: Our system consisted of 13 classifiers, one for each eligibility criterion. All classifiers used a bag-of-words document representation model. To prevent the loss of relevant contextual information associated with such representation, a pattern-matching approach was used to extract context-sensitive features. They were embedded back into the text as lexically distinguishable tokens, which were consequently featured in the bag-of-words representation. Supervised machine learning was chosen wherever a sufficient number of both positive and negative instances was available to learn from. A rule-based approach focusing on a small set of relevant features was chosen for the remaining criteria. Results: The system was evaluated using microaveraged F measure. Overall, 4 machine algorithms, including support vector machine, logistic regression, naïve Bayesian classifier, and gradient tree boosting (GTB), were evaluated on the training data using 10–fold cross-validation. Overall, GTB demonstrated the most consistent performance. Its performance peaked when oversampling was used to balance the training data. The final evaluation was performed on previously unseen test data. On average, the F measure of 89.04% was comparable to 3 of the top ranked performances in the shared task (91.11%, 90.28%, and 90.21%). With an F measure of 88.14%, we significantly outperformed these systems (81.03%, 78.50%, and 70.81%) in identifying patients with advanced coronary artery disease. Conclusions: The holdout evaluation provides evidence that our system was able to identify eligible patients for the given clinical trial with high accuracy. Our approach demonstrates how rule-based knowledge infusion can improve the performance of machine learning algorithms even when trained on a relatively small dataset. %M 31674914 %R 10.2196/15980 %U http://medinform.jmir.org/2019/4/e15980/ %U https://doi.org/10.2196/15980 %U http://www.ncbi.nlm.nih.gov/pubmed/31674914 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 10 %P e15455 %T Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study %A Reuter,Katja %A Zhu,Yifan %A Angyan,Praveen %A Le,NamQuyen %A Merchant,Akil A %A Zimmer,Michael %+ Southern California Clinical and Translational Science Institute, Keck School of Medicine, University of Southern California, 2250 Alcazar Street # 200, Los Angeles, CA, 90089, United States, 1 3234422046, katja.reuter@gmail.com %K AIDS %K cancer %K clinical research %K clinical trial %K crowdsourcing %K ethics %K HIV %K HPV %K infoveillance %K infodemiology %K informed consent %K Internet %K research ethics %K Mechanical Turk %K MTurk %K monitoring %K obesity %K privacy %K public opinion %K recruitment %K smoking %K social media %K social network %K surveillance %K TurkPrime %K Twitter %D 2019 %7 30.10.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Social networks such as Twitter offer the clinical research community a novel opportunity for engaging potential study participants based on user activity data. However, the availability of public social media data has led to new ethical challenges about respecting user privacy and the appropriateness of monitoring social media for clinical trial recruitment. Researchers have voiced the need for involving users’ perspectives in the development of ethical norms and regulations. Objective: This study examined the attitudes and level of concern among Twitter users and nonusers about using Twitter for monitoring social media users and their conversations to recruit potential clinical trial participants. Methods: We used two online methods for recruiting study participants: the open survey was (1) advertised on Twitter between May 23 and June 8, 2017, and (2) deployed on TurkPrime, a crowdsourcing data acquisition platform, between May 23 and June 8, 2017. Eligible participants were adults, 18 years of age or older, who lived in the United States. People with and without Twitter accounts were included in the study. Results: While nearly half the respondents—on Twitter (94/603, 15.6%) and on TurkPrime (509/603, 84.4%)—indicated agreement that social media monitoring constitutes a form of eavesdropping that invades their privacy, over one-third disagreed and nearly 1 in 5 had no opinion. A chi-square test revealed a positive relationship between respondents’ general privacy concern and their average concern about Internet research (P<.005). We found associations between respondents’ Twitter literacy and their concerns about the ability for researchers to monitor their Twitter activity for clinical trial recruitment (P=.001) and whether they consider Twitter monitoring for clinical trial recruitment as eavesdropping (P<.001) and an invasion of privacy (P=.003). As Twitter literacy increased, so did people’s concerns about researchers monitoring Twitter activity. Our data support the previously suggested use of the nonexceptionalist methodology for assessing social media in research, insofar as social media-based recruitment does not need to be considered exceptional and, for most, it is considered preferable to traditional in-person interventions at physical clinics. The expressed attitudes were highly contextual, depending on factors such as the type of disease or health topic (eg, HIV/AIDS vs obesity vs smoking), the entity or person monitoring users on Twitter, and the monitored information. Conclusions: The data and findings from this study contribute to the critical dialogue with the public about the use of social media in clinical research. The findings suggest that most users do not think that monitoring Twitter for clinical trial recruitment constitutes inappropriate surveillance or a violation of privacy. However, researchers should remain mindful that some participants might find social media monitoring problematic when connected with certain conditions or health topics. Further research should isolate factors that influence the level of concern among social media users across platforms and populations and inform the development of more clear and consistent guidelines. %M 31670698 %R 10.2196/15455 %U http://www.jmir.org/2019/10/e15455/ %U https://doi.org/10.2196/15455 %U http://www.ncbi.nlm.nih.gov/pubmed/31670698 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 10 %P e15035 %T Patient Engagement in Medical Research Among Older Adults: Analysis of the Health Information National Trends Survey %A Gerido,Lynette Hammond %A Tang,Xiang %A Ernst,Brittany %A Langford,Aisha %A He,Zhe %+ School of Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL, 32306, United States, 1 8506445775, zhe@fsu.edu %K aging %K health care disparities %K patient participation %K medical informatics %D 2019 %7 29.10.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: By 2035, it is expected that older adults (aged 65 years and older) will outnumber children and will represent 78 million people in the US population. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research. Objective: This study aimed to describe sociodemographic characteristics and health and information behaviors as factors that influence US adults’ interest in engaging in medical research, beyond participation as study subjects. Methods: Nationally representative cross-sectional data from the 2014 Health Information National Trends Survey (N=3677) were analyzed. Descriptive statistics and weighted multivariable logistic regression analyses were performed to assess predictors of one’s interest in patient engagement in medical research. The independent variables included age, general health, income, race and ethnicity, education level, insurance status, marital status, and health information behaviors. Results: We examined the association between the independent variables and patient interest in engaging in medical research (PTEngage_Interested). Patient interest in engaging in medical research has a statistically significant association with age (adjusted P<.01). Younger adults (aged 18-34 years), lower middle-aged adults (aged 35-49 years), and higher middle-aged adults (aged 50-64 years) indicated interest at relatively the same frequency (29.08%, 29.56%, and 25.12%, respectively), but older adults (aged ≥65 years) expressed less interest (17.10%) than the other age groups. After the multivariate model was run, older adults (odds ratio 0.738, 95% CI 0.500-1.088) were found to be significantly less likely to be interested in engaging in medical research than adults aged 50 to 64 years. Regardless of age, the strongest correlation was found between interest in engaging in medical research and actively looking for health information (P<.001). Respondents who did not seek health information were significantly less likely than those who did seek health information to be interested in engaging in medical research. Conclusions: Patients’ interest in engaging in medical research vary by age and information-seeking behaviors. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research. Interest in participatory research methods may reflect an opportunity for consumer health informatics technologies to improve the representation of older adults in future medical research. %M 31663860 %R 10.2196/15035 %U http://www.jmir.org/2019/10/e15035/ %U https://doi.org/10.2196/15035 %U http://www.ncbi.nlm.nih.gov/pubmed/31663860 %0 Journal Article %@ 1929-0748 %I JMIR Publications %V 8 %N 10 %P e12444 %T Health Research Using Facebook to Identify and Recruit Pregnant Women Who Use Electronic Cigarettes: Internet-Based Nonrandomized Pilot Study %A Lee,Harold H %A Hsieh,Yuli Patrick %A Murphy,Joe %A Tidey,Jennifer W %A Savitz,David A %+ Department of Social and Behavioral Sciences, Harvard TH Chan School of Public Health, 428F, 401 Park Dr, Boston, MA, 02215, United States, 1 617 432 1135, hhlee@hsph.harvard.edu %K e-cigarette %K pregnancy %K social media %D 2019 %7 18.10.2019 %9 Original Paper %J JMIR Res Protoc %G English %X Background: Participant recruitment is often a challenge, particularly enrolling individuals with relatively rare characteristics. The wide reach of social media may provide a mechanism to overcome these challenges. Objective: This paper aimed to provide information to researchers who seek to recruit participants from rare populations using social media for studies with demanding protocols. We aimed to describe a pilot study protocol that identified and enrolled pregnant women (second or third trimester) who were exclusive users of electronic cigarettes (e-cigarettes). We have described the recruitment methods, time, and cost; examined advertisement types that were more or less successful; discussed participant retention and relationship management; and described the process of collecting biological data. Methods: In an open-access, nonrandomized pilot study, we placed Facebook advertisements that were selectively targeting women who were likely to be pregnant and interested in e-cigarettes or vaping. The advertisements invited individuals to complete a fully automated eligibility screener based on Qualtrics. Eligible participants were asked to (1) complete a Web-based survey that collected detailed information on the use of e-cigarettes, including the exact type of device and electronic liquid, (2) report the frequency and intensity of e-cigarette use for 3 months before pregnancy and during each trimester, and (3) provide a saliva specimen for a nicotine biomarker assay. We collected a photograph of each participant’s e-cigarette device, 8 weeks after the mother’s due date, to allow corroboration of the self-report and the baby’s birth weight and gestational age from the participant’s physician. Results: Participants were recruited between August 19 and October 26, 2017. We enrolled 20 participants in 2 months at a cost of US $3421.28. Baseline data were collected for all 20 participants. Of the 20 women enrolled, 16 provided a saliva sample, 4 provided a photo of the e-cigarette device, and 10 provided physician contact information. Of the 10 physicians contacted by mail, 6 responded with information on the participants and their babies. Conclusions: Study findings suggest that Facebook’s targeting criteria should focus on e-cigarette users to maximize advertisement exposure of potentially eligible women. In addition, saliva sample collection was feasible among pregnant women (second or third trimester) who were exclusive e-cigarette users, but obtaining photographs and physician reports was problematic and called for further refinement. These lessons are likely useful to others who are seeking to use social media to recruit participants from rare populations into studies with demanding protocols. %M 31628785 %R 10.2196/12444 %U https://www.researchprotocols.org/2019/10/e12444 %U https://doi.org/10.2196/12444 %U http://www.ncbi.nlm.nih.gov/pubmed/31628785 %0 Journal Article %@ 2369-2960 %I JMIR Publications %V 5 %N 4 %P e14080 %T Youth Study Recruitment Using Paid Advertising on Instagram, Snapchat, and Facebook: Cross-Sectional Survey Study %A Ford,Kelsey Lynett %A Albritton,Tashuna %A Dunn,Tara A %A Crawford,Kacy %A Neuwirth,Jessica %A Bull,Sheana %+ Anschutz Medical Campus, University of Colorado, 13001 E 17th Pl, Aurora, CO, 80045, United States, 1 303724 5000, kelsey.ford@cuanschutz.edu %K social media %K youth %K surveys and questionnaires %D 2019 %7 9.10.2019 %9 Original Paper %J JMIR Public Health Surveill %G English %X Background: The use of paid social media advertising for targeted study recruitment is an effective strategy in health research and evaluation, specifically to reach diverse youth participants. Although the literature adequately describes the utility of Facebook in recruitment, limited information exists for social media platforms that are more popular with youth, specifically Instagram and Snapchat. Objective: This paper outlines a paid advertising approach using Instagram, Snapchat, and Facebook to evaluate a statewide youth marijuana prevention campaign. The objective of this study was to compare recruitment metrics across Instagram, Snapchat, and Facebook for two surveys documenting youth knowledge, attitudes, and behaviors related to retail marijuana in Colorado post legalization. In addition, the study assessed the feasibility of using Instagram and Snapchat as effective additions to Facebook for youth study recruitment. Methods: A social media recruitment strategy was used to conduct two cross-sectional surveys of youth, aged 13 to 20 years, in Colorado. Geographically targeted ads across 3 social media platforms encouraged the completion of a Web-based self-administered survey. Ad Words and Snap Ads were used to deploy and manage advertising campaigns, including ad design, placement, and analysis. Ad costs and recruitment metrics (ie, impressions, link clicks, and conversion rates) were calculated across the three social media platforms. Results: Over two 1-month periods, 763,613 youth were reached (ie, impressions), 6089 of them clicked survey links (ie, clicks), and 828 eligible youth completed surveys about knowledge, attitudes, and behaviors related to retail marijuana. Instagram converted 36.13% (803/2222) of impressions to clicks (ie, conversion rate) in the first survey and 0.87% (864/98982) in the second survey. Snapchat generated the most impressions and link clicks, but it did so with the lowest conversion rate for both surveys, with a 1.40% (1600/114,200) conversion rate in the first survey and a 0.36% (1818/504700) conversion rate in the second survey. Facebook maintained a consistent conversion rate of roughly 2% across both surveys, despite reductions in budget for the second survey. The cost-per-click ranged between US $0.25 and $0.37 across the three platforms, with Snapchat as both the most cost-effective platform in the first survey and the most expensive platform in the second survey. Conclusions: Recruitment and enrollment outcomes indicate the use of Instagram and Snapchat, in addition to Facebook, may be a modern, useful, and cost-effective approach to reach youth with surveys on sensitive health topics. As the use of Facebook declines among youth, the use of more popular social media platforms can augment study recruitment for health research and evaluation efforts. %M 31599739 %R 10.2196/14080 %U https://publichealth.jmir.org/2019/4/e14080 %U https://doi.org/10.2196/14080 %U http://www.ncbi.nlm.nih.gov/pubmed/31599739 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 21 %N 8 %P e14021 %T Using Facebook Advertising to Recruit Representative Samples: Feasibility Assessment of a Cross-Sectional Survey %A Shaver,Lance Garrett %A Khawer,Ahmed %A Yi,Yanqing %A Aubrey-Bassler,Kris %A Etchegary,Holly %A Roebothan,Barbara %A Asghari,Shabnam %A Wang,Peizhong Peter %+ Division of Community Health and Humanities, Faculty of Medicine, Memorial University of Newfoundland, Room 4M205, St John's, NL, A1B 3V6, Canada, 1 709 777 8571, pwang@mun.ca %K Facebook %K health surveys %K Canada %K research subject recruitment %K social media %K internet %K online recruitment %D 2019 %7 19.08.2019 %9 Original Paper %J J Med Internet Res %G English %X Background: Facebook has shown promise as an economical means of recruiting participants for health research. However, few studies have evaluated this recruitment method in Canada, fewer still targeting older adults, and, to our knowledge, none specifically in Newfoundland and Labrador (NL). Objective: This study aimed to assess Facebook advertising as an economical means of recruiting a representative sample of adults aged 35 to 74 years in NL for a cross-sectional health survey. Methods: Facebook advertising was used to recruit for a Web-based survey on cancer awareness and prevention during April and May 2018; during recruitment, additional advertisements were targeted to increase representation of demographics that we identified as being underrepresented in our sample. Sociodemographic and health characteristics of the study sample were compared with distributions of the underlying population to determine representativeness. Cramer V indicates the magnitude of the difference between the sample and population distributions, interpreted as small (Cramer V=0.10), medium (0.30), and large (0.50). Sample characteristics were considered representative if there was no statistically significant difference in distributions (chi-square P>.01) or if the difference was small (V≤0.10), and practically representative if 0.10