@Article{info:doi/10.2196/69470, author="Raizman, Rose and Ram{\'i}rez-GarciaLuna, Luis Jos{\'e} and Newaz, Tanmoy and Wang, C. Sheila and Berry, K. Gregory and Kong, Yuan Ling and Mohammed, Tallah Heba and Fraser, J. Robert D.", title="Empowering Patients and Caregivers to Use Artificial Intelligence and Computer Vision for Wound Monitoring: Nonrandomized, Single-Arm Feasibility Study", journal="J Particip Med", year="2025", month="Jun", day="4", volume="17", pages="e69470", keywords="artificial intelligence", keywords="AI", keywords="computer vision", keywords="wound care", keywords="patient engagement", keywords="mobile phone", keywords="diabetic foot ulcer", abstract="Background: Chronic wounds affect 1\%-2\% of the global population, and pose significant health and quality-of-life challenges for patients and caregivers. Advances in artificial intelligence (AI) and computer vision (CV) technologies present new opportunities for enhancing wound care, particularly through remote monitoring and patient engagement. A digital wound care solution (DWCS) that facilitates wound tracking using AI was redesigned as a patient-facing mobile app to empower patients and caregivers to actively participate in wound monitoring and management. Objective: This study aims to evaluate the feasibility, usability, and preliminary clinical outcomes of the Patient Connect app (Swift Medical Inc) in enabling patients and caregivers to remotely capture and share wound data with health care providers. Methods: A feasibility study was conducted at 2 outpatient clinics in Canada between May 2020 and February 2021. A total of 28 patients with chronic wounds were recruited and trained to use the Patient Connect app for wound imaging and secure data sharing with their care teams. Wound images and data were analyzed using AI models integrated into the app. Clinicians reviewed the data to inform treatment decisions during follow-up visits or remotely. Key metrics included app usage frequency, patient engagement, and wound closure rates. Results: Participants captured a median of 13 wound images per wound, with images submitted every 8 days on average. The study cohort included patients with diabetic ulcers, venous ulcers, pressure injuries, and postsurgical wounds. A median wound closure surface area closure of 80\% (range 15-100) was achieved across all patients, demonstrating the app's clinical potential. Feedback from patients and clinicians highlighted during the feasibility testing support insight into the app's usability, data security features, and ability to enhance remote monitoring that need to be explored in further qualitative research. Conclusions: The Patient Connect app effectively engaged patients and caregivers in chronic wound care, demonstrating feasibility and promising clinical outcomes. By enabling secure, remote wound monitoring through AI technology, the app has the potential to improve patient adherence, enhance care accessibility, and optimize clinical workflows. Future studies should focus on evaluating its scalability, cost-effectiveness, and broader applicability in diverse health care settings. ", doi="10.2196/69470", url="https://jopm.jmir.org/2025/1/e69470" } @Article{info:doi/10.2196/72015, author="Woolley, Louise Karen and Woolley, JD and Woolley, James Mark", title="Seek and Ye Shall Not Find (Yet): Searching Clinical Trial Registries for Trials Designed With Patients---A Call to Action", journal="J Particip Med", year="2025", month="May", day="30", volume="17", pages="e72015", keywords="patient and public involvement", keywords="clinical trial", keywords="clinical trial registry", keywords="diversity, equity, and inclusion", keywords="patient author", keywords="caregiver author", keywords="patient partner", keywords="GRIPP2", keywords="plain language summary", doi="10.2196/72015", url="https://jopm.jmir.org/2025/1/e72015" } @Article{info:doi/10.2196/50828, author="Bugnon, Benjamin and Bosisio, Francesca and Kaufmann, Alain and Bonnabry, Pascal and Geissbuhler, Antoine and von Plessen, Christian", title="Value Propositions for Digital Shared Medication Plans to Boost Patient--Health Care Professional Partnerships: Co-Design Study", journal="J Particip Med", year="2025", month="Jan", day="28", volume="17", pages="e50828", keywords="digital shared medication plan", keywords="medication records", keywords="medication list", keywords="e-medication", keywords="interoperability", keywords="electronic patient records", keywords="patient involvement", keywords="partnership", keywords="coproduction", keywords="medication safety", abstract="Background: Health authorities worldwide have invested in digital technologies to establish robust information exchange systems for improving the safety and efficiency of medication management. Nevertheless, inaccurate medication lists and information gaps are common, particularly during care transitions, leading to avoidable harm, inefficiencies, and increased costs. Besides fragmented health care processes, the inconsistent incorporation of patient-driven changes contributes to these problems. Concurrently, patient-empowerment tools, such as mobile apps, are often not integrated into health care professional workflows. Leveraging coproduction by allowing patients to update their digital shared medication plans (SMPs) is a promising but underused and challenging approach. Objective: This study aimed to determine the value propositions of a digital tool enabling patients, family caregivers, and health care professionals to coproduce and co-manage medication plans within Switzerland's national eHealth architecture. Methods: We used an experience-based co-design approach in the French-speaking region of Switzerland. The multidisciplinary research team included 5 patients as co-researchers. We recruited polypharmacy patients, family caregivers, and health care professionals with a broad range of experiences, diseases, and ages. The experience-based co-design had 4 phases: capturing, understanding, and improving experiences, followed by preparing recommendations and next steps. A qualitative, participatory methodology was used to iteratively explore collaborative medication management experiences and identify barriers and enabling mechanisms, including technology. We conducted a thematic analysis of participant interviews to develop value propositions for digital SMPs. Results: In total, 31 persons participated in 9 interviews, 5 focus groups, and 2 co-design workshops. We identified four value propositions for involving patients and family caregivers in digital SMP management: (1) comprehensive, accessible information about patients' current medication plans and histories, enabling streamlined access and reconciliation on a single platform; (2) patient and health care professional empowerment through the explicit co-ownership of SMPs, fostering coresponsibility, accountability, and transparent collaboration; (3) a means of supporting collaborative interprofessional medication management, including tailored access to information and improved communication across stakeholders; and (4) an opportunity to improve the quality of care and catalyze digital health innovations. Participants discussed types of patient involvement in editing shared information and emphasized the importance of tailoring SMPs to individual abilities and preferences to foster health equity. Integrating co-management into the clinical routine and creating supportive conditions were deemed important. Conclusions: Coproduced SMPs can improve medication management by fostering trust and collaboration between patients and health care professionals. Successful implementation will require eHealth interoperability frameworks that embrace the complexity of medication management and support diverse use configurations. Our findings underscored the shared responsibility of all stakeholders, including policy makers and technology providers, for the effective and safe use of SMPs. The 4 value propositions offer strategic guidance, while highlighting the need for further research in different health care settings. ", doi="10.2196/50828", url="https://jopm.jmir.org/2025/1/e50828" } @Article{info:doi/10.2196/49941, author="Duncan, L. Christina and Muther, F. Emily and Lindwall, J. Jennifer and Durkin, Kristine and Ruvalcaba, Elizabeth and Williamson, Eliza and Ahrabi-Nejad, Corrine and Bord, Evelyn and Green, Angela and Harrison, L. Megan and Polineni, Deepika", title="Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study", journal="J Particip Med", year="2025", month="Jan", day="20", volume="17", pages="e49941", keywords="cystic fibrosis", keywords="telecoaching", keywords="self-management", keywords="community engagement", keywords="community partner", keywords="intervention development", abstract="Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management. Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population--centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it). Methods: AYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input. Results: For Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention. Conclusions: This study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions. ", doi="10.2196/49941", url="https://jopm.jmir.org/2025/1/e49941" } @Article{info:doi/10.2196/60324, author="Fang, Heping and Xian, Ruoling and Li, Juan and Li, Yingcun and Liu, Enmei and Zhao, Yan and Hu, Yan", title="Urban-Suburban Differences in Public Perspectives on Digitalizing Pediatric Research: Cross-Sectional Survey Study", journal="J Med Internet Res", year="2025", month="Jan", day="7", volume="27", pages="e60324", keywords="pediatrics", keywords="pediatric research", keywords="digital health", keywords="public opinion", keywords="research", keywords="patient participation", keywords="urban", keywords="rural", keywords="caregiver attitudes", keywords="social media", keywords="mobile phone", abstract="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. ", doi="10.2196/60324", url="https://www.jmir.org/2025/1/e60324" } @Article{info:doi/10.2196/64508, author="Arcia, Adriana and Stonbraker, Samantha and Mangal, Sabrina and Lor, Maichou", title="A Practical Guide to Participatory Design Sessions for the Development of Information Visualizations: Tutorial", journal="J Particip Med", year="2024", month="Dec", day="13", volume="16", pages="e64508", keywords="audiovisual aids", keywords="cultural competency", keywords="health communication", keywords="patient participation", keywords="participatory design", keywords="information visualization", keywords="health literacy", keywords="user-centered design", keywords="human-computer interaction", doi="10.2196/64508", url="https://jopm.jmir.org/2024/1/e64508" } @Article{info:doi/10.2196/50491, author="Naccarella, Lucio and Rawstorn, Charles Jonathan and Kelly, Jaimon and Quested, Eleanor and Jenkinson, Stuart and Kwasnicka, Dominika", title="Unlocking the Potential for Implementation of Equitable, Digitally Enabled Citizen Science: Multidisciplinary Digital Health Perspective", journal="J Med Internet Res", year="2024", month="Dec", day="10", volume="26", pages="e50491", keywords="citizen science", keywords="digital health", keywords="equity", keywords="implementation science", keywords="community", keywords="research", keywords="health inequality", keywords="health equity", keywords="health integration", keywords="mental well-being", keywords="well-being", doi="10.2196/50491", url="https://www.jmir.org/2024/1/e50491" } @Article{info:doi/10.2196/56970, author="Bostock, CS Emmanuelle and Nevarez-Flores, G. Adriana and Neil, L. Amanda and Pontes, M. Halley and Kirkby, C. Kenneth", title="Self-Induced Mania Methods and Motivations Reported in Online Forums: Observational Qualitative Study", journal="J Particip Med", year="2024", month="Dec", day="6", volume="16", pages="e56970", keywords="bipolar disorder", keywords="mania", keywords="hypomania", keywords="self-induced", keywords="online forums", keywords="consumer reports", abstract="Background: In bipolar disorder (BD), mania may be self-induced by manipulation of specific precipitants, as reported in case studies. Another potential source of information on the self-induction of mania is the online postings of users with lived experience of mania. Objective: The primary aim of this study is to examine the range of methods used to self-induce mania or hypomania described by users of online forums with self-reported BD. Second, we summarize the motivations of users to engage in these behaviors. Methods: We conducted an observational study of online forum posts that discussed self-induction of mania or hypomania, either in the posters themselves or observed firsthand in others. Posts were identified using Google advanced search operators, then extracted and coded for content in NVivo (version 12 for Mac; QSR International). A total of 44 online forum threads were identified discussing self-induced mania (n=25) or hypomania (n=19). These forums contained 585 posts by 405 usernames, of which 126 usernames discussed methods for self-induction across 327 posts (number of methods per username: median 2, IQR 1-4; range 1-11). Results: In total, 36 methods were grouped by the authors. The most frequently reported were sleep reduction (n=50), caffeine (n=37), and cessation of medication (n=27). Twenty-six usernames reported their motivation to self-induce mania or hypomania; almost three-quarters (n=19) reported a desire to end a depressive episode. Almost a third of usernames (118/405) explicitly discouraged other forum users from self-inducing mania or hypomania. Conclusions: Online forums provide an additional and valuable source of information about triggers for mania that may inform relapse prevention in BD. The online forum conversations investigated were generally responsible and included cautionary advice not to pursue these methods. ", doi="10.2196/56970", url="https://jopm.jmir.org/2024/1/e56970" } @Article{info:doi/10.2196/54841, author="Calderon Ramirez, Lucrecia Claudia and Farmer, Yanick and Downar, James and Frolic, Andrea and Opatrny, Lucie and Poirier, Diane and Bravo, Gina and L'Esp{\'e}rance, Audrey and Gaucher, Nathalie and Payot, Antoine and Dahine, Joseph and Tanuseputro, Peter and Rousseau, Louis-Martin and Dumez, Vincent and Desc{\^o}teaux, Annie and Dallaire, Clara and Laporte, Karell and Bouthillier, Marie-Eve", title="Assessing the Quality of an Online Democratic Deliberation on COVID-19 Pandemic Triage Protocols for Access to Critical Care in an Extreme Pandemic Context: Mixed Methods Study", journal="J Particip Med", year="2024", month="Nov", day="11", volume="16", pages="e54841", keywords="quality assessment", keywords="online democratic deliberation", keywords="COVID-19 triage or prioritization", keywords="critical care", keywords="clinical ethics", abstract="Background: Online democratic deliberation (ODD) may foster public engagement in new health strategies by providing opportunities for knowledge exchange between experts, policy makers, and the public. It can favor decision-making by generating new points of view and solutions to existing problems. Deliberation experts recommend gathering feedback from participants to optimize future implementation. However, this online modality has not been frequently evaluated. Objective: This study aims to (1) assess the quality of an ODD held in Quebec and Ontario, Canada, on the topic of COVID-19 triage protocols for access to critical care in an extreme pandemic context and (2) determine its transformative aspect according to the perceptions of participants. Methods: We conducted a simultaneous ODD in Quebec and Ontario on May 28 and June 4, 2022, with a diversified target audience not working in the health care system. We used a thematic analysis for the transcripts of the deliberation and the written comments of the participants related to the quality of the process. Participants responded to a postdeliberation questionnaire to assess the quality of the ODD and identify changes in their perspectives on COVID-19 pandemic triage protocols after the deliberation exercise. Descriptive statistics were used. An index was calculated to determine equality of participation. Results: The ODD involved 47 diverse participants from the public (n=20, 43\% from Quebec and n=27, 57\% from Ontario). Five themes emerged: (1) process appreciation, (2) learning experience, (3) reflecting on the common good, (4) technological aspects, and (5) transformative aspects. A total of 46 participants responded to the questionnaire. Participants considered the quality of the ODD satisfactory in terms of process, information shared, reasoning, and videoconferencing. A total of 4 (80\%) of 5 participants reported at least 1 change of perspective on some of the criteria and values discussed. Most participants reported that the online modality was accessible and user-friendly. We found low polarization when calculating equal participation. Improvements identified were measures to replace participants when unable to connect and optimization of time during discussions. Conclusions: Overall, the participants perceived the quality of ODD as satisfactory. Some participants self-reported a change of opinion after deliberation. The online modality may be an acceptable alternative for democratic deliberation but with some organizational adaptations. ", doi="10.2196/54841", url="https://jopm.jmir.org/2024/1/e54841" } @Article{info:doi/10.2196/53394, author="Branitsky, Alison and Bee, Penny and Bucci, Sandra and Lovell, Karina and Foster, Simon and Whelan, Pauline", title="Co-Designing a Digital App to Support Young People's Patient and Public Involvement and Engagement (VoiceIn): Development and Usability Study", journal="JMIR Hum Factors", year="2024", month="Oct", day="24", volume="11", pages="e53394", keywords="patient and public involvement and engagement", keywords="PPIE", keywords="digital mental health", keywords="young people", keywords="co-design", keywords="mental health", abstract="Background: While patient and public involvement and engagement (PPIE) is now seen as a cornerstone of mental health research, young people's involvement in PPIE faces limitations. Work and school demands and more limited independence can make it challenging for young people to engage with PPIE. Lack of ability or desire to attend face-to-face meetings or group discussions can further compound this difficulty. The VoiceIn app and digital platform were codeveloped by a multidisciplinary team of young people, mental health researchers, and software designers, and enables young people to engage directly with PPIE opportunities via a mobile app. Objective: This paper aims to describe how VoiceIn was developed through a series of co-design workshops with relevant stakeholders, specifically (1) how the initial design of VoiceIn was informed and driven by focus groups with young people, mental health professionals, and PPIE leads; (2) how VoiceIn was refined through collaboration with the aforementioned stakeholders; (3) the priorities for an app to support PPIE; (4) the key features necessary in the PPIE app; and (5) the recommended next steps in testing and deploying the digital platform. Methods: Initial co-design workshops took place with young people, mental health professionals, and PPIE leads to identify key features of an app to support PPIE. A series of VoiceIn design prototypes were developed and iterated based on the priorities and preferences of the stakeholders. The MoSCoW (must have, should have, could have, won't have) prioritization method was used throughout the process to identify priorities across the different stakeholder groups. Results: Co-design with young people, mental health professionals, and PPIE leads supported the successful development and improvement of the VoiceIn app. As a result of this process, key features were identified, including allowing for various modes of providing feedback (eg, polls and comments), reviewing project updates, and expressing interest in categories of research. The researcher platform was developed to support multimedia uploads for project descriptions; a jargon detector; a dedicated section for providing project updates; and a visually appealing, user-friendly design. While all stakeholder groups emphasized the importance of allowing app users to engage with the app in various ways and for there to be ongoing progress updates, group differences were also noticed. Young people expressed a desire for incentives and rewards for engaging with the app (eg, to post on their public social media profiles), and mental health professionals and PPIE leads prioritized flexibility in describing the project and its PPIE needs. Conclusions: A co-design approach was pivotal to the development of the VoiceIn app. This collaborative approach enabled the app to meet the divergent needs of young people, mental health professionals, and PPIE leads. This process mirrored the aspirations of PPIE initiatives by cocreating a digital health research tool with key stakeholders. ", doi="10.2196/53394", url="https://humanfactors.jmir.org/2024/1/e53394" } @Article{info:doi/10.2196/58136, author="Ackermann, Deonna and Hersch, Jolyn and Jordan, Dana and Clinton-Gray, Emily and Bracken, Karen and Janda, Monika and Turner, Robin and Bell, Katy", title="Participant Motivators and Expectations in the MEL-SELF Randomized Clinical Trial of Patient-Led Surveillance for Recurrent Melanoma: Content Analysis of Survey Responses", journal="JMIR Dermatol", year="2024", month="Oct", day="17", volume="7", pages="e58136", keywords="teledermatology", keywords="melanoma", keywords="randomized controlled trial", keywords="trial recruitment and retention", keywords="studies within a trial", keywords="SWATs", keywords="dermatology", keywords="cancer", keywords="early detection", keywords="dermatology clinical trials", keywords="clinical trials", keywords="mobile phone", abstract="Background: Limited data exist on the motivations and expectations of participants when enrolling in dermatology clinical trials, including melanoma early detection trials. Understanding participant motivators for research engagement has been identified as a prioritized area for trial methodology research. Objective: The study aimed to determine motivators of participation and expectations from trial involvement among patients enrolled in the MEL-SELF randomized clinical trial of patient-led surveillance for new or recurrent melanoma. Methods: The MEL-SELF trial is recruiting patients previously treated for localized melanoma, who own a smartphone, have a partner to assist with skin self-examination (SSE), and attend routinely scheduled follow-up at specialist and primary care skin clinics in Australia. We evaluated responses from the first 100 randomized participants to 2 open-ended questions about their motivations and expectations for participating in the trial, administered through the internet-based baseline questionnaire. A total of 3 coders independently coded the free-text responses and resolved discrepancies through consensus. Qualitative content analysis by an iterative process was used to group responses into themes. Responses from potential participants who were not randomized and the 404 participants randomized subsequently into the trial, were also checked for new themes. Coding and analysis were conducted in Microsoft Excel. Results: Out of the 100 survey participants, 98 (98\%) answered at least 1 of the 2 questions. Overall, responses across the motivation and expectation items indicated 3 broad themes: community benefit, perceived personal benefit, and trusting relationship with their health care provider. The most common motivators for participation were related to community benefit. These included progressing medical research, benefitting future melanoma patients who may have similar experiences, and broader altruistic sentiments such as ``helping others'' or ``giving back.'' The most common expectations from the trial related to personal benefit. These included perceived improved outcomes such as earlier diagnosis and treatment, access to additional care, and increased self-empowerment to take actions themselves that benefit their health. Patients expressed a desire to gain health-related knowledge and skills and were interested in the potential advantages of teledermatology. There were no new themes in responses from those who were not randomized or were randomized subsequent to the first 100. Conclusions: We report a tailorable, patient-focused approach to identify drivers of research engagement in clinical research. Clinical trials offer an opportunity to collate a substantial evidence base on determinants of research participation and to identify context-specific factors. Results from the MEL-SELF trial emphasized notable altruism, self-empowerment, and perceived advantages of teledermatology as specific motivators. These findings informed consent processes, recruitment, retention, response to trial tasks, and intervention adherence for the MEL-SELF host trial. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000176864.https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379527\& ", doi="10.2196/58136", url="https://derma.jmir.org/2024/1/e58136" } @Article{info:doi/10.2196/38189, author="Milliken, Tabitha and Beiler, Donielle and Hoffman, Samantha and Olenginski, Ashlee and Troiani, Vanessa", title="Recruitment in Appalachian, Rural and Older Adult Populations in an Artificial Intelligence World: Study Using Human-Mediated Follow-Up", journal="JMIR Form Res", year="2024", month="Aug", day="22", volume="8", pages="e38189", keywords="telecommunication", keywords="enrollment rate", keywords="Northern Appalachia", keywords="web-based", keywords="aging", keywords="recruitment", keywords="rural", abstract="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. ", doi="10.2196/38189", url="https://formative.jmir.org/2024/1/e38189" } @Article{info:doi/10.2196/49600, author="Hu, Sisi and Kirkpatrick, E. Ciera and Lee, Namyeon and Hong, Yoorim and Lee, Sungkyoung and Hinnant, Amanda", title="Using Short-Form Videos to Get Clinical Trial Newcomers to Sign Up: Message-Testing Experiment", journal="J Med Internet Res", year="2024", month="Aug", day="15", volume="26", pages="e49600", keywords="clinical trial recruitment", keywords="TikTok", keywords="source credibility", keywords="framing", keywords="psychological barriers", keywords="logistical barriers", keywords="integrated behavioral model", keywords="short-form videos", keywords="social media use", keywords="clinical trial", keywords="recruitment", abstract="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) {\texttimes} 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 ($\beta$=.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 ($\beta$=--.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 ($\beta$=--.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 ($\beta$=.08, P=.14), and psychological and logistical barrier--framed messages did not significantly differ in attitudes toward clinical trial participation ($\beta$=--.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. ", doi="10.2196/49600", url="https://www.jmir.org/2024/1/e49600" } @Article{info:doi/10.2196/57155, author="Smith, A. Katharine and Hardy, Amy and Vinnikova, Anastasia and Blease, Charlotte and Milligan, Lea and Hidalgo-Mazzei, Diego and Lambe, Sin{\'e}ad and Marzano, Lisa and Uhlhaas, J. Peter and Ostinelli, G. Edoardo and Anmella, Gerard and Zangani, Caroline and Aronica, Rosario and Dwyer, Bridget and Torous, John and Cipriani, Andrea", title="Digital Mental Health for Schizophrenia and Other Severe Mental Illnesses: An International Consensus on Current Challenges and Potential Solutions", journal="JMIR Ment Health", year="2024", month="May", day="8", volume="11", pages="e57155", keywords="digital", keywords="mental health", keywords="severe mental illness", keywords="consensus", keywords="lived experience", keywords="ethics", keywords="user-centered design", keywords="patient and public involvement", keywords="mobile phone", abstract="Background: Digital approaches may be helpful in augmenting care to address unmet mental health needs, particularly for schizophrenia and severe mental illness (SMI). Objective: An international multidisciplinary group was convened to reach a consensus on the challenges and potential solutions regarding collecting data, delivering treatment, and the ethical challenges in digital mental health approaches for schizophrenia and SMI. Methods: The consensus development panel method was used, with an in-person meeting of 2 groups: the expert group and the panel. Membership was multidisciplinary including those with lived experience, with equal participation at all stages and coproduction of the consensus outputs and summary. Relevant literature was shared in advance of the meeting, and a systematic search of the recent literature on digital mental health interventions for schizophrenia and psychosis was completed to ensure that the panel was informed before the meeting with the expert group. Results: Four broad areas of challenge and proposed solutions were identified: (1) user involvement for real coproduction; (2) new approaches to methodology in digital mental health, including agreed standards, data sharing, measuring harms, prevention strategies, and mechanistic research; (3) regulation and funding issues; and (4) implementation in real-world settings (including multidisciplinary collaboration, training, augmenting existing service provision, and social and population-focused approaches). Examples are provided with more detail on human-centered research design, lived experience perspectives, and biomedical ethics in digital mental health approaches for SMI. Conclusions: The group agreed by consensus on a number of recommendations: (1) a new and improved approach to digital mental health research (with agreed reporting standards, data sharing, and shared protocols), (2) equal emphasis on social and population research as well as biological and psychological approaches, (3) meaningful collaborations across varied disciplines that have previously not worked closely together, (4) increased focus on the business model and product with planning and new funding structures across the whole development pathway, (5) increased focus and reporting on ethical issues and potential harms, and (6) organizational changes to allow for true communication and coproduction with those with lived experience of SMI. This study approach, combining an international expert meeting with patient and public involvement and engagement throughout the process, consensus methodology, discussion, and publication, is a helpful way to identify directions for future research and clinical implementation in rapidly evolving areas and can be combined with measurements of real-world clinical impact over time. Similar initiatives will be helpful in other areas of digital mental health and similarly fast-evolving fields to focus research and organizational change and effect improved real-world clinical implementation. ", doi="10.2196/57155", url="https://mental.jmir.org/2024/1/e57155", url="http://www.ncbi.nlm.nih.gov/pubmed/38717799" } @Article{info:doi/10.2196/49262, author="Larsen, Maria and Holde, Eirin Gro and Johnsen, Kolset Jan-Are", title="Investigating Patient Satisfaction Through Web-Based Reviews of Norwegian Dentists: Quantitative Study Using the Meaning Extraction Method", journal="J Particip Med", year="2024", month="May", day="3", volume="16", pages="e49262", keywords="internet use", keywords="Linguistic Inquiry and Word Count", keywords="LIWC", keywords="patient satisfaction", keywords="patient preference", keywords="challenging encounters", keywords="preventive dentistry", keywords="population surveillance", abstract="Background: Challenging encounters in health care professions, including in dentistry, are relatively common. Challenging encounters can be defined as stressful or emotional situations involving patients that could impact both treatment outcomes and patients' experiences. Through written web-based reviews, patients can share their experiences with health care providers, and these posts can be a useful source for investigating patient satisfaction and their experiences of challenging encounters. Objective: This study aims to identify dominant themes from patient-written, web-based reviews of dentists and investigate how these themes are related to patient satisfaction with dental treatment. Methods: The study data consisted of 11,764 reviews written by dental patients, which included 1- to 5-star ratings on overall satisfaction and free-text comments. The free-text comments were analyzed using Linguistic Inquiry and Word Count software, and the meaning extraction method was used to group words into thematic categories. These themes were used as variables in a multilevel logistic regression analysis to predict patient satisfaction. Results: Eight themes emerged from the analyses, of which 6 (75\%)---explanation (odds ratio [OR] 2.56, 95\% CI 2.16-3.04; P<.001), assurance (OR 3.61, 95\% CI 2.57-5.06; P<.001), performance assessment (OR 2.17, 95\% CI 1.84-2.55; P<.001), professional advice (OR 1.81, 95\% CI 1.55-2.13; P<.001), facilities (OR 1.78, 95\% CI 1.08-2.91; P=.02), and recommendation (OR 1.31, 95\% CI 1.12-1.53; P<.001)---increased the odds of high patient satisfaction. The remaining themes (2/8, 25\%)---consequences of treatment need (OR 0.24, 95\% CI 0.20-0.29; P<.001) and patient-centered care (OR 0.62, 95\% CI 0.52-0.74; P<.001)---reduced the odds of high patient satisfaction. Conclusions: The meaning extraction method is an interesting approach to explore patients' written accounts of encounters with dental health professionals. The experiences described by patients provide insight into key elements related to patient satisfaction that can be used in the education of dental health professionals and to improve the provision of dental health services. ", doi="10.2196/49262", url="https://jopm.jmir.org/2024/1/e49262", url="http://www.ncbi.nlm.nih.gov/pubmed/38700933" } @Article{info:doi/10.2196/48573, author="Bergers, HK Juno and Wessels-Wynia, Hester and Seute, Tatjana and Janssens, Astrid and van Delden, JM Johannes", title="Getting to Know Your Patient: Content Analysis of Patients' Answers to a Questionnaire for Promoting Person-Centered Care", journal="J Particip Med", year="2024", month="Mar", day="4", volume="16", pages="e48573", keywords="person-centered care", keywords="shared decision-making", keywords="patient engagement", keywords="positive health", abstract="Background: Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire (``We would like to know you'') consisting of 5 questions has previously been developed to help HCPs to get to know the patient with the help of patient and staff involvement. Objective: The purpose of this study was to provide insight into the content and aims of the questionnaire to understand its potential and usability. Methods: We conducted a qualitative, retrospective content analysis of patients' answers using NVivo Pro (QSR International). The questionnaire was used in the outpatient neuro-oncology department of a Dutch academic hospital. Results: Of 374 invited patients, 78 (20.9\%) completed the questionnaire. We selected a sample of 42 (54\%) of the 78 patients. Patients used a median of 16 (IQR 7-27) words per question, and most answers were easily interpretable. When asked about important activities, social activities, sports, or maintaining a normal life were most frequently mentioned. Patients wrote about fear of the disease, its possible influence on life, or fear of the future in general. Patients wanted HCPs to know about their care and communication preferences or shared personal information. They formulated expectations about effective treatment, communication, and the care process. Conclusions: The questionnaire seems usable because patients provide interpretable answers that take little time to read, which HCPs can use to personalize care. Our study shows the potential of the questionnaire to help deliver PCC. ", doi="10.2196/48573", url="https://jopm.jmir.org/2024/1/e48573", url="http://www.ncbi.nlm.nih.gov/pubmed/38437017" } @Article{info:doi/10.2196/46607, author="Quintal, Ariane and Carreau, Isabelle and Grenier, Annie-Danielle and H{\'e}bert, Caroline and Yergeau, Christine and Berthiaume, Yves and Racine, Eric", title="An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach", journal="J Particip Med", year="2023", month="Nov", day="23", volume="15", pages="e46607", keywords="community-based participatory research", keywords="rare diseases", keywords="bioethics", keywords="delivery of health care", keywords="ethics", keywords="clinical", keywords="patient participation", keywords="empowerment", keywords="education", keywords="medical", keywords="attitude of health personnel", keywords="patient education as topic", keywords="patient partnership", abstract="Background: Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral challenges by patients, jeopardizing their life trajectories, dreams, and aspirations. Objective: This paper presents an ethical action plan for rare disease care and the process underlying its development. Methods: This action plan was designed through an ethical inquiry conducted by the Ethics and Rare Diseases Working Group, which included 3 patient partners, 2 clinician researchers, and 1 representative from Qu{\'e}bec's rare disease association. Results: The plan is structured into 4 components. Component A presents the key moral challenges encountered by patients, which are the lack of knowledge on rare diseases among health care workers, the problematic attitudes that it sometimes elicits, and the distress and powerlessness experienced by patients. Component B emphasizes a vision for patient partnership in rare disease care characterized by open-mindedness, empathy, respect, and support of patient autonomy from health care workers. Component C outlines 2 courses of action prompted by this vision: raising awareness among health care workers and empowering patients to better navigate their care. Component D compares several interventions that could help integrate these 2 courses of action in rare disease care. Conclusions: Overall, this action plan represents a toolbox that provides a review of multiple possible interventions for policy makers, hospital managers, practitioners, researchers, and patient associations to critically reflect on key moral challenges experienced by patients with rare diseases and ways to mitigate them. This paper also prompts reflection on the values underlying rare disease care, patient experiences, and health care workers' beliefs and behaviors. Health care workers and patients were the primary beneficiaries of this action plan. ", doi="10.2196/46607", url="https://jopm.jmir.org/2023/1/e46607", url="http://www.ncbi.nlm.nih.gov/pubmed/37995128" } @Article{info:doi/10.2196/24966, author="Thayer, K. Erin and Pam, Molly and Al Achkar, Morhaf and Mentch, Laura and Brown, Georgia and Kazmerski, M. Traci and Godfrey, Emily", title="Best Practices for Virtual Engagement of Patient-Centered Outcomes Research Teams During and After the COVID-19 Pandemic: Qualitative Study", journal="J Particip Med", year="2021", month="Mar", day="11", volume="13", number="1", pages="e24966", keywords="attributes", keywords="best practices", keywords="COVID-19", keywords="cystic fibrosis", keywords="engagement", keywords="outcome", keywords="patient", keywords="patient-centered outcomes research", keywords="qualitative", keywords="research", keywords="stakeholder engagement", keywords="user guide", keywords="virtual care", keywords="virtual teams", keywords="web-based collaboration", abstract="Background: Patient-centered outcomes research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. The COVID-19 pandemic has forced PCOR teams to engage through web-based platforms rather than in person. Similarly, virtual engagement is the only safe alternative for members of the cystic fibrosis (CF) community, who spend their lives following strict infection control guidelines and are already restricted from in-person interactions. In the absence of universal best practices, the CF community has developed its own guidelines to help PCOR teams engage through web-based platforms. Objective: This study aimed to identify the important attributes, facilitators, and barriers to teams when selecting web-based platforms. Methods: We conducted semistructured interviews with CF community members, nonprofit stakeholders, and researchers to obtain information regarding their experience with using web-based platforms, including the effectiveness and efficiency of these platforms and their satisfaction with and confidence while using each platform. Interviews conducted via Zoom were audio recorded and transcribed. We identified key themes through content analysis with an iterative, inductive, and deductive coding process. Results: In total, 15 participants reported using web-based platforms for meetings, project management, document sharing, scheduling, and communication. When selecting web-based platforms, participants valued their accessibility, ease of use, and integration with other platforms. Participants speculated that successful web-based collaboration involved platforms that emulate in-person interactions, recognized the digital literacy levels of the team members, intentionally aligned platforms with collaboration goals, and achieved team member buy-in to adopt new platforms. Conclusions: Successful web-based engagement in PCOR requires the use of multiple platforms in order to fully meet the asynchronous or synchronous goals of the project. This study identified the key attributes for the successful practice of PCOR on web-based platforms and the common challenges and solutions associated with their use. Our findings provide the best practices for selecting platforms and the lessons learned through web-based PCOR collaborations. ", doi="10.2196/24966", url="https://jopm.jmir.org/2021/1/e24966", url="http://www.ncbi.nlm.nih.gov/pubmed/33646964" } @Article{info:doi/10.2196/25867, author="Myers, L. Amanda and Collins-Pisano, Caroline and Ferron, C. Joelle and Fortuna, L. Karen", title="Feasibility and Preliminary Effectiveness of a Peer-Developed and Virtually Delivered Community Mental Health Training Program (Emotional CPR): Pre-Post Study", journal="J Particip Med", year="2021", month="Mar", day="4", volume="13", number="1", pages="e25867", keywords="Emotional CPR (eCPR)", keywords="peer support", keywords="peer-delivered training", keywords="mental health", keywords="community mental health", abstract="Background: The COVID-19 pandemic has led to a global mental health crisis, highlighting the need for a focus on community-wide mental health. Emotional CPR (eCPR) is a program and practice developed by persons with a lived experience of recovery from trauma or mental health challenges to train community members from diverse backgrounds to support others through mental health crises. eCPR trainers have found that eCPR may promote feelings of belonging by increasing supportive behaviors toward individuals with mental health problems. Thus, clinical outcomes related to positive and negative affect would improve along with feelings of loneliness. Objective: This study examined the feasibility and preliminary effectiveness of eCPR. Methods: We employed a pre-post design with 151 individuals, including peer support specialists, service users, clinicians, family members, and nonprofit leaders, who participated in virtual eCPR trainings between April 20, 2020, and July 31, 2020. Instruments were administered before and after training and included the Herth Hope Scale; Empowerment Scale; Flourishing Scale (perceived capacity to support individuals); Mindful Attention Awareness Scale; Active-Empathic Listening Scale (supportive behaviors toward individuals with mental health challenges); Social Connectedness Scale (feelings of belonging and connection with others); Positive and Negative Affect Schedule; and University of California, Los Angeles 3-item Loneliness Scale (symptoms and emotions). The eCPR fidelity scale was used to determine the feasibility of delivering eCPR with fidelity. We conducted 2-tailed paired t tests to examine posttraining improvements related to each scale. Additionally, data were stratified to identify pre-post differences by role. Results: Findings indicate that it is feasible for people with a lived experience of a mental health condition to develop a program and train people to deliver eCPR with fidelity. Statistically significant pre-post changes were found related to one's ability to identify emotions, support others in distress, communicate nonverbally, share emotions, and take care of oneself, as well as to one's feelings of social connectedness, self-perceived flourishing, and positive affect (P?.05). Findings indicated promising evidence of pre-post improvements (not statistically significant) related to loneliness, empowerment, active-empathetic listening, mindfulness awareness, and hope. Nonprofit leaders and workers demonstrated the greatest improvements related to loneliness, social connectedness, empathic listening, and flourishing. Peer support specialists demonstrated the greatest improvements related to positive affect, and clinicians demonstrated the greatest improvements related to mindfulness awareness. Conclusions: Promising evidence indicates that eCPR, a peer-developed and peer-delivered program, may increase feelings of belonging while increasing supportive behaviors toward individuals with mental health problems and improving clinical outcomes related to positive and negative affect and feelings of loneliness. ", doi="10.2196/25867", url="https://jopm.jmir.org/2021/1/e25867", url="http://www.ncbi.nlm.nih.gov/pubmed/33661129" } @Article{info:doi/10.2196/14974, author="Moore, M. Courtney and Wiehe, E. Sarah and Lynch, O. Dustin and Claxton, EM Gina and Landman, P. Matthew and Carroll, E. Aaron and Musey, I. Paul", title="Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 1): Development of a Decolonization Toolkit With Patient and Parent Advisors", journal="J Participat Med", year="2020", month="May", day="20", volume="12", number="2", pages="e14974", keywords="Staphylococcus aureus", keywords="MRSA", keywords="abscess", keywords="decolonization", keywords="human-centered design", keywords="communication design", abstract="Background: Community-acquired methicillin-resistant Staphylococcus aureus (MRSA) skin and soft tissue infections affect many healthy children. A significant number of these children are hospitalized and require surgical incision and drainage (I\&D). Once sent home, these children and families are asked to complete burdensome home decolonization and hygiene procedures in an effort to prevent the high rate of recurrent infections. Objective: This component of the Methicillin-resistant Staphylococcus aureus Eradication and Decolonization in Children (MEDiC) study aimed to develop a toolkit to assist MEDiC study participants in completing MRSA decolonization and hygiene procedures at home (the MEDiC kit). Methods: In all, 5 adolescents (aged 10-18 years) who had undergone an I\&D procedure for a skin infection and 11 parents of children who had undergone an I\&D procedure for a skin infection were engaged in a 4-hour group workshop using a human-centered design approach. The topics covered in this workshop and analyzed for this paper were (1) attitudes about MRSA decolonization procedures and (2) barriers to the implementation of MRSA decolonization and hygiene procedures. The team analyzed the audio and artifacts created during the workshop and synthesized their findings to inform the creation of the MEDiC kit. Results: The workshop activities uncovered barriers to successful completion of the decolonization and hygiene procedures: lack of step-by-step instruction, lack of proper tools in the home, concerns about adverse events, lack of control over some aspects of the hygiene procedures, and general difficulty coordinating all the procedures. Many of these could be addressed as part of the MEDiC kit. In addition, the workshop revealed that effective communication about decolonization would have to address concerns about the effects of bleach, provide detailed information, give reasons for the specific decolonization and hygiene protocol steps, and include step-by-step instructions (preferably through video). Conclusions: Through direct engagement with patients and families, we were able to better understand how to support families in implementing MRSA decolonization and hygiene protocols. In addition, we were able to better understand how to communicate about MRSA decolonization and hygiene protocols. With this knowledge, we created a robust toolkit that uses patient-driven language and visuals to help support patients and families through the implementation of these protocols. Trial Registration: ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658 ", doi="10.2196/14974", url="http://jopm.jmir.org/2020/2/e14974/" } @Article{info:doi/10.2196/14062, author="Bouras, Adam and Simoes, J. Eduardo and Boren, Suzanne and Hicks, Lanis and Zachary, Iris and Buck, Christoph and Dhingra, Satvinder and Ellis, Richard", title="Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel", journal="J Participat Med", year="2020", month="May", day="15", volume="12", number="2", pages="e14062", keywords="surveys and questionnaires", keywords="confidentiality", keywords="electronic health records", keywords="fitness trackers", keywords="mobile applications", keywords="logistic models", abstract="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. ", doi="10.2196/14062", url="http://jopm.jmir.org/2020/2/e14062/", url="http://www.ncbi.nlm.nih.gov/pubmed/33064096" } @Article{info:doi/10.2196/12336, author="Prior, Sarah and Miller, Andrea and Campbell, Steven and Linegar, Karen and Peterson, Gregory", title="The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study", journal="J Participat Med", year="2020", month="Feb", day="7", volume="12", number="1", pages="e12336", keywords="stroke", keywords="communication", keywords="research", keywords="qualitative", keywords="aphasia", keywords="participatory research", abstract="Background: Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia. Objective: The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia. Methods: A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these reflections. Results: The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia. The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement. Conclusions: Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants. ", doi="10.2196/12336", url="https://jopm.jmir.org/2020/1/e12336" } @Article{info:doi/10.2196/12338, author="Eggeling, Marie and Bientzle, Martina and Shiozawa, Thomas and Cress, Ulrike and Kimmerle, Joachim", title="The Impact of Visualization Format and Navigational Options on Laypeople's Perception and Preference of Surgery Information Videos: Randomized Controlled Trial and Online Survey", journal="J Participat Med", year="2018", month="Nov", day="22", volume="10", number="4", pages="e12338", keywords="attitude", keywords="decision aids", keywords="emotions", keywords="informed decision making", keywords="knowledge acquisition", keywords="medical decision making", keywords="surgery", keywords="video", abstract="Background: Patients need to be educated about possible treatment choices in order to make informed medical decisions. As most patients are medical laypeople, they find it difficult to understand complex medical information sufficiently to feel confident about a decision. Multimedia interventions such as videos are increasingly used to supplement personal consultations with medical professionals. Former research has shown that such interventions may have a positive effect on understanding, decision making, and emotional reactions. However, it is thus far unclear how different features of videos influence these outcomes. Objective: We aimed to examine the impact of visualization formats and basic navigational options in medical information videos about cruciate ligament surgery on recipients' knowledge gain, emotions, attitude, and hypothetical decision-making ability. Methods: In a between-group randomized experiment (Study 1), 151 participants watched 1 of 4 videos (schematic vs realistic visualization; available vs unavailable navigational options). In a separate online survey (Study 2), 110 participants indicated their preference for a video design. All participants were medical laypeople without personal experience with a cruciate ligament rupture and were presented with a fictional decision situation. Results: In Study 1, participants who used navigational options (n=36) gained significantly more factual knowledge (P=.005) and procedural knowledge (P<.001) than participants who did not have or use navigational options (n=115). A realistic visualization induced more fear (P=.001) and disgust (P<.001) than a schematic video. Attitude toward the surgery (P=.02) and certainty regarding the decision for or against surgery (P<.001) were significantly more positive after watching the video than before watching the video. Participants who watched a schematic video rated the video significantly higher than that by participants who watched a realistic video (P<.001). There were no significant group differences with regard to hypothetical decision making and attitude toward the intervention. In addition, we did not identify any influence of the visualization format on knowledge acquisition. In Study 2, 58 of 110 participants (52.7\%) indicated that they would prefer a schematic visualization, 26 (23.6\%) preferred a realistic visualization, 17 (15.5\%) wanted either visualization, and 9 (8.2\%) did not want to watch a video at all. Of the participants who wanted to watch a video, 91 (90.1\%) preferred to have navigational options, 3 (3.0\%) preferred not to have navigational options, and 7 (6.9\%) did not mind the options. Conclusion: Our study indicates that the perception of medical information videos is influenced by their design. Schematic videos with navigational options are the most helpful among all videos to avoid negative emotions and support knowledge acquisition when informing patients about an intervention. The visualization format and navigational options are important features that should be considered when designing medical videos for patient education. Trial Registration: Deutsches Register Klinischer Studien DRKS00016003; https://www.drks.de/drks\_web/ navigate.do?navigationId= trial.HTML\&TRIAL\_ID=DRKS00016003 (Archived by WebCite at http://www.webcitation.org/746ASSAhN) ", doi="10.2196/12338", url="http://jopm.jmir.org/2018/4/e12338/" }