Journal of Participatory Medicine最新文献

{"title":"Developing a Culturally Tailored Narrative Video for Skin Cancer Prevention Among Spanish-Speaking Hispanic Outdoor Workers: Co-Design Study.","authors":"David Perez, Valeria Gómez, Dariana Sedeño-Delgado, Carlos Orellana García, Rosemary Sokas, Elissa Fairbrother, Jocelyn Apodaca Schlossberg, Amparo Caballero, Pilar Carrera, Otto Castillo Caldas, Melida Chacon, Lilia Correa-Selm, Nathaly Garcés Lenis, Geoffrey T Gibney, Nan Kyle Ficca, Ellen N Pritchett, Douglas Wilder, Edith Yañez, Rosa Yañez, Rebecca Young, Chiranjeev Dash, Roxanne Mirabal-Beltran, Alejandra Hurtado-de-Mendoza","doi":"10.2196/89986","DOIUrl":"10.2196/89986","url":null,"abstract":"<p><strong>Background: </strong>Hispanic individuals face a higher risk of skin cancer due to disproportionate occupational sun exposure; yet, culturally tailored resources for this demographic are scarce.</p><p><strong>Objective: </strong>The aim of this study was to codevelop a culturally tailored narrative video to enhance skin cancer prevention among Spanish-speaking Hispanic outdoor workers.</p><p><strong>Methods: </strong>We partnered with the National Conservatory of Dramatic Arts, medical specialists, national skin cancer prevention organizations, occupational health experts, and Hispanic outdoor workers to create an educational video that promotes sun protection and skin cancer awareness and prevention among Hispanic outdoor workers and their families. Development was based on extensive formative research, health behavior models, and interactive script review by multistakeholder and community advisory boards.</p><p><strong>Results: </strong>The final result is a 27-minute video that follows Miguel, who is taking ownership of his father's landscaping business as he is diagnosed with basal cell carcinoma. Throughout the video, Miguel and his wife, Sofía, learn about skin cancers, their warning signs, and steps for prevention, ultimately using this knowledge to protect and empower his employees and family. Key engagement strategies include cultural tailoring, story-driven learning, and visual modeling.</p><p><strong>Conclusions: </strong>This culturally and theoretically informed video represents a tool to increase knowledge and self-efficacy among Spanish-speaking Hispanic outdoor workers and their families, potentially reducing their skin cancer risk. Future research should evaluate the video's acceptability and impact on enhancing awareness, knowledge, and sun-protective behaviors.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e89986"},"PeriodicalIF":0.0,"publicationDate":"2026-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13197112/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148006897","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Investigation of the Content Validity, Feasibility, Internal Consistency, and Construct Validity of 5 Patient-Reported Outcome Questions on Patient Involvement in Care Among Adolescents With Type 1 Diabetes: Multimethods Study.","authors":"Annesofie Lunde Jensen, Rikke Bjerre Lassen, Caroline Bruun Abild, Kurt Kristensen, Lene Juel Solskov, Jens Thusgaard Hoerlück","doi":"10.2196/86580","DOIUrl":"10.2196/86580","url":null,"abstract":"<p><strong>Background: </strong>Validated measurement tools that focus solely on assessing adolescents' involvement in their treatment are scarce.</p><p><strong>Objective: </strong>The study aimed to validate 5 patient-reported outcome (PRO) questions regarding patient involvement in care among adolescents with type 1 diabetes.</p><p><strong>Methods: </strong>A multimethod and questionnaire design was used. A total of 447 adolescents (aged 11-18 y) completed a short questionnaire that included 5 PRO questions regarding patient involvement in their care. In total, 25 interviews were conducted with 20 adolescents, as some adolescents were interviewed twice. The content validity, feasibility, internal consistency, and construct validity of the PRO questions were analyzed.</p><p><strong>Results: </strong>Assessment of validity revealed that most participants encountered no or minor difficulties comprehending the PRO questions. The interviews demonstrated that all participants showed a satisfactory understanding of 3 of the 5 PRO questions. However, the terms \"appropriate\" and \"experiences\" posed a challenge for 3 out of 20 participants. Using data from the questionnaire, the feasibility, internal consistency, and construct validity analyses uncovered only 2 limitations in validity. First, the clinical use of the questions limits anonymity, potentially introducing bias. Second, adolescents younger than the age of 15 years had more difficulty with the item \"I talked to the health care staff about the questions or concerns I had.\"</p><p><strong>Conclusions: </strong>The PRO questions are valid for measuring patient involvement among adolescents with type 1 diabetes. Respondents stated that the PRO questions were easy to understand, relevant, and comprehensive. There should be awareness when using the PRO questions, as they are most robust for those aged 15 years or older. Therefore, using these PRO questions in both clinical settings and research demands thoughtful consideration regarding their application and setup, particularly when considering the age of respondents and circumstances. It is worth noting that these PRO questions may pose validity challenges for use among adolescents younger than the age of 15 years with type 1 diabetes.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e86580"},"PeriodicalIF":0.0,"publicationDate":"2026-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13187346/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147976019","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Theorizing How Context Influences School-Based Interventions That Support Children's Weight Management: Co-Producing a Refined Logic Model.","authors":"Dylan Kneale, Rachael C Edwards, Meena Khatwa, Phuong Tu Nguyen, Sajid Saleem, Sylvia Chaires, Lisa Richardson, Vanessa Bennett, Tabitha Evans, Alison O'Mara-Eves","doi":"10.2196/80309","DOIUrl":"10.2196/80309","url":null,"abstract":"<p><strong>Background: </strong>Schools can play an important role in supporting child weight management, with evidence suggesting that school-based interventions can be effective, albeit with substantial variation. Part of this variation could reflect the different contexts in which interventions are implemented. Our previous work found that co-production of research and adopting a complex systems model of evidence can be transformative for understanding this context. However, less is known about how co-production helps prioritize elements for exploration or how we should assess the value of co-production in research development. This study addresses these gaps by co-producing a refined logic model (a graphical representation of a theory) of the contextual influencers on school-based weight management to support public health research and policymaking.</p><p><strong>Objective: </strong>This study aimed to (1) identify critical contextual features to consider when planning school-based weight management interventions targeting the intersection of physical activity, healthy eating, and mental well-being; (2) understand the difference that we, as co-producers, make when working together; and (3) identify learning about the process of producing and refining a logic model.</p><p><strong>Methods: </strong>Through collaborative workshops, we refined an existing theoretical framework identifying contextual influences. We critically reviewed existing frameworks for evaluating co-production, creating a new evaluation approach for our collaborative practices, complemented by surveys and workshop feedback.</p><p><strong>Results: </strong>Six criteria were identified and applied to refine the original logic model, significantly reducing complexity. The revised model prioritized systemic and policy factors, emphasizing environmental structuring rather than individual behaviors, and incorporated a stronger emphasis on life course factors. We used a tool and process developed specifically for this project, which may have broader utility for other research projects, to understand the value of working together. Many of us recognized that the impacts of the project and working together were unexpected and, for some of us, transformational. Nevertheless, we did identify some factors that could support co-production in future. These included the need for clearer initial discussions on positionalities, role expectations, and autonomy.</p><p><strong>Conclusions: </strong>Our refined model aligns with broader calls to shift away from narratives centered on personal responsibility in children's health. This research further demonstrates the practical value and feasibility of co-produced theoretical frameworks, effectively reshaping the focus of research from the outset and challenging established assumptions.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e80309"},"PeriodicalIF":0.0,"publicationDate":"2026-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13160485/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147875870","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Occupational Therapy Services for Community-Dwelling Patients With Stroke in Thailand: Explanatory Sequential Mixed Methods Study.","authors":"Sopida Apichai, Jananya P Dhippayom, Pachpilai Chaiwong, Savitree Thummasorn, Piyawat Trevittaya, Waranya Chingchit","doi":"10.2196/94765","DOIUrl":"10.2196/94765","url":null,"abstract":"<p><strong>Background: </strong>Stroke is a major cause of long-term disability, and upper extremity (UE) impairment frequently limits independence in activities of daily living (ADLs) and community participation. In Thailand, although acute stroke care has improved, continuity of rehabilitation in community settings remains uneven. Currently, there is limited empirical evidence identifying occupational therapy (OT) services and the barriers affecting service delivery in practice.</p><p><strong>Objective: </strong>This study aimed to examine current OT practices among community-dwelling patients with stroke in Thailand, identify barriers affecting service delivery, and explore therapists' perspectives on the future development of community-based rehabilitation.</p><p><strong>Methods: </strong>An explanatory sequential mixed methods design was used. Phase I (survey phase) involved an online survey of 59 occupational therapists to describe service patterns and perceived barriers, while phase II (interview phase) comprised semistructured interviews with 7 experienced occupational therapists to obtain deeper insight into practice contexts and challenges. Quantitative data were analyzed descriptively, and qualitative data were analyzed using thematic analysis.</p><p><strong>Results: </strong>OT services were primarily individualized and focused on functional activities, particularly basic ADLs (49/59, 83.05%), cognitive (44/59, 74.58%), and sensorimotor training (40/59, 67.80%). Service frequency was generally limited, and nonstandardized assessments were commonly used alongside policy-required measures, such as the Barthel Index. Major barriers were identified at organization/leadership, client, and therapist levels, including resource shortages (50/59, 84.75%), inaccessible to service (45/59, 76.27%), lack of public awareness about OT (45/59, 76.27%), and lack of time (42/59, 71.19%). Occupational therapists described adapting practice through client-centered and culturally responsive approaches, with active caregiver involvement. A proposed home-based stroke rehabilitation box set emerged as a potential strategy to support continuity of rehabilitation.</p><p><strong>Conclusions: </strong>Community-based OT in Thailand operates within structural constraints, while maintaining occupation-centered practice. Strengthening services may require system-level support and practical strategies to enhance continuity of care.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e94765"},"PeriodicalIF":0.0,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13179487/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147821789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advancing the Science of Patient Input in Drug Research and Development.","authors":"Marilyn A Metcalf, Henrietta Awo Osei-Anto, Thomas J Sharpe, Luther T Clark, Carolyn K Shore","doi":"10.2196/74436","DOIUrl":"10.2196/74436","url":null,"abstract":"<p><p>The integration of patient input into drug research & development (R&D) enables the production of medicines that better meet the needs of patients. While momentum for advancing the science of patient input has continued to grow, there remain a host of barriers to full implementation and integration of systematic approaches for collecting and using robust and meaningful patient input data to inform decision-making. To help address these barriers, the Advancing the Science of Patient Input Action Collaborative (the collaborative), an activity associated with the National Academies of Sciences, Engineering, and Medicine (National Academies) Forum on Drug Discovery, Development, and Translation, organized a multi-stakeholder endeavor to identify and address key barriers to implementation through a series of information-gathering efforts. The collaborative engaged a wide range of perspectives to seek out practical paths forward to better align drug discovery, development, and regulation with patient priorities for disease management and treatment. Collaborative participants focused on three overarching research priorities which, if effectively addressed, would help advance the science of patient input: 1) understanding the patient experience over the course of a given disease or medical condition, 2) capturing the patient perspectives and priorities on benefit-risk, and 3) incorporating patient input into clinical trial design and continuous improvement. Addressing these research priorities would help decision makers shift away from using patient input in particular cases or for one-off applications and towards the integration of patient input as part of everyday medical research and practice. Building upon existing guidances and strategies, and sharing lessons learned from use cases, a comprehensive patient input framework would serve as a critical step towards reimagining and enriching the science of patient input throughout the drug R&D process, enabling a future in which medicines more fully meet the needs of patients.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e74436"},"PeriodicalIF":0.0,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13179488/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147821727","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Preparing for Care: A Clinician's Perspective on Anticipatory Caregiving and Meaning Making.","authors":"Vania Modesto-Lowe","doi":"10.2196/91508","DOIUrl":"10.2196/91508","url":null,"abstract":"<p><strong>Unlabelled: </strong>More than 50 million adults in the United States provide unpaid care to a family member. Caregiving is associated with high rates of depression, anxiety, social isolation, financial strain, and physical exhaustion. Elevated caregiver distress has also been linked to poorer patient outcomes, including worse symptom control, lower adherence to treatment, and increased health care use. Despite this well-documented burden, most research and intervention efforts focus on caregivers once illness or disability is already advanced and strain is fully present. Far less attention has been given to anticipatory caregiving, the emotional and relational adjustments that begin before clear functional decline. As aging parents grow more frail, adult children often confront uncertainty, shifting roles, and the gradual loss of independence long before hands-on care is required. This period may be marked by vigilance, grief, and existential distress, yet it remains largely unaddressed in the literature. This perspective examines anticipatory caregiving through clinical reflection and personal narrative, highlighting the need to recognize and support caregivers earlier in the trajectory of aging, before crisis defines the experience.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e91508"},"PeriodicalIF":0.0,"publicationDate":"2026-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13123750/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147783830","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Integrating Data Visualizations Into Digital Mental Health Care for Adults With Anxiety and Depression: Participatory Design and Case Study.","authors":"Katherine Lim, Rebekah Bodner, Kathryn Taylor Ledley, Shiwei Wang, Luke S Scheuer, John Torous","doi":"10.2196/90255","DOIUrl":"10.2196/90255","url":null,"abstract":"<p><strong>Background: </strong>Digital phenotyping offers unprecedented opportunities for capturing real-time mental health data through smartphones, yet translating this data into clinically actionable insights remains challenging. While smartphones can generate nearly one million data points per patient per day, health care systems have struggled to incorporate even basic ecological momentary assessment data into routine care workflows.</p><p><strong>Objective: </strong>This paper presents a model for clinician-facing data visualizations that can be shared with patients to increase understanding of mental health symptoms and enhance shared decision-making. We describe (1) a participatory design process through which visualizations were cocreated with clinicians; (2) integration of these visualizations into a Digital Navigator-supported (DN) workflow; and (3) a case example illustrating how data visualizations can enhance patient insight and support treatment adjustments.</p><p><strong>Methods: </strong>This work was conducted within the Digital Clinic program at Beth Israel Deaconess Medical Center. Fifteen clinicians and 3 clinical supervisors participated in a participatory design process to develop visualizations meeting clinical workflow needs. Data visualizations were integrated into weekly DN sessions following a 3-phase model (guide, refinement, and autonomy) based on self-determination theory.</p><p><strong>Results: </strong>Six visualization types were developed: gauge charts for engagement behaviors, symptom trajectory graphs, correlation matrices linking passive and active data, sleep visualizations, polar/radar charts for multidimensional assessment, and passive-active data integration graphs. A clinical case demonstrates how these visualizations, when delivered through structured DN facilitation, supported patient engagement, behavioral insight, and autonomous self-management across an 8-week treatment program.</p><p><strong>Conclusions: </strong>Thoughtfully designed data visualizations, when developed collaboratively with clinicians and delivered through structured support, can transform digital phenotyping from a technical capability into a practical tool for enhancing engagement, promoting behavioral insight, and supporting self-management in digital mental health care. Future research should examine how this approach affects therapeutic alliance and clinical outcomes across diverse patient populations.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e90255"},"PeriodicalIF":0.0,"publicationDate":"2026-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13108835/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147783800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiential Classes Plus Digital Logging in Antenatal Care for Pregnant Women in China: Mixed Methods Study.","authors":"Zhenfeng Sun, Fuwen Yang, Xi Wang, Yin Sun, Suhan Zhang, Liangkun Ma","doi":"10.2196/84705","DOIUrl":"10.2196/84705","url":null,"abstract":"<p><strong>Background: </strong>Maternal health during the perinatal period is a global public health priority. While antenatal education is widely implemented, conventional lecture-based models often fail to achieve sustained behavior change. Innovative approaches that integrate experiential learning with digital support may enhance maternal knowledge, self-management, and pregnancy outcomes.</p><p><strong>Objective: </strong>The aim of this study is to evaluate the feasibility and preliminary effectiveness of a combined experiential class and online logging intervention for pregnant women in China and to explore the mechanisms underpinning its impact on health practices and service experiences.</p><p><strong>Methods: </strong>A mixed methods design was used in a district-level maternal and child health hospital in Beijing. In the quantitative arm, 40 women (intervention group, n=20; control group, n=20) were enrolled in a quasi-experimental comparison. Outcomes included knowledge-attitude-practice indicators, service satisfaction, and clinical birth outcomes. Given the limited sample size, a qualitative arm was conducted to complement statistical findings: semistructured interviews with 20 women (10 per group) were analyzed thematically. Quantitative and qualitative results were integrated during interpretation to provide a comprehensive evaluation.</p><p><strong>Results: </strong>Compared with the experiential class alone, the combined intervention was associated with higher knowledge scores (mean difference 1.6 points, 95% CI 0.8-2.4), stronger adherence to recommended health practices (composite adherence score difference 1.0, 95% CI 0.4-1.6), and higher overall service satisfaction (mean difference 0.6, 95% CI 0.2-1.0). Across multiple domains, a higher proportion of participants in the intervention group met dietary, exercise, and supplementation recommendations. Clinical outcome differences were exploratory, as the study was not powered for these end points. Qualitative analysis revealed 3 mechanisms, such as empowerment and self-efficacy, practice and persistence, and systemic/environmental support, through which the intervention influenced experiences and practices.</p><p><strong>Conclusions: </strong>The experiential class plus online logging model is feasible and acceptable in a real-world antenatal setting. Although limited by a small sample size, findings suggest that the intervention improves maternal knowledge, health practices, and service experiences and may inform future adequately powered trials to evaluate pregnancy outcomes. Qualitative insights highlight mechanisms of health practice change and provide contextual depth, underscoring the value of mixed methods designs in maternal health research.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e84705"},"PeriodicalIF":0.0,"publicationDate":"2026-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13099118/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147783822","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Patient Monitoring Roundtable as Catalyst for Health Care Innovation: Case Study.","authors":"Elena Hinz, Jasper Wagnitz, Merve Sarica, Anne Rike Flint, Amin Chaoui, Mona Prendke, Louis Agha-Mir-Salim, Felix Balzer, Akira-Sebastian Poncette","doi":"10.2196/82786","DOIUrl":"10.2196/82786","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;In the field of patient monitoring, there often remains a gap between clinical needs and the monitoring technologies available from industry. To conquer this, the Patient Monitoring Roundtable (PMRT) live event series offers a sustainable and structured platform for innovation through focused small-group discussions, prioritizing deep engagement among stakeholders. By establishing a dynamic, low-barrier forum, the PMRT aims to serve as a thought leadership platform in patient monitoring and digital health, driving continuous improvement and shaping the future of health care technology.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This paper pursues 2 main objectives: first, to describe the concept, implementation, and practical insights of the PMRT as a novel format for transdisciplinary collaboration in digital health; second, to evaluate its perceived impact and reception among participants.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The concept and implementation of the format were described using internal planning documents, event materials, and communication records. To evaluate participant reception and perceived impact, a cross-sectional online survey was conducted between October 2024 and January 2025. The questionnaire was distributed at PMRT events and via digital channels, including the PMRT newsletter and LinkedIn.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The PMRT was conducted 29 times between January 2022 and June 2025. It is usually structured in a keynote, followed by interactive small group workshops and a consecutive group discussion, and concluded by a networking session. Examples of topics include alarm management, tele-surveillance and care, user testing of monitoring devices, implementation science, data protection and cybersecurity, artificial intelligence in medicine, and interoperability. Following each event, a structured set of postevent activities ensures continued engagement and knowledge dissemination. A total of 47 responses were included in the survey analysis. The 2 most represented professional backgrounds were industry representatives and physicians. Other participants came from nursing, research, or other fields. Most respondents reported having experience in patient monitoring and digital health, with no notable differences across professional backgrounds or gender. More than half had attended several PMRT events. Formats such as small group discussions and workshops were viewed as highly effective in fostering dialogue. Most participants felt they were part of a professional community, and some reported having established new collaborations. Informal exchanges and interactive workshops were seen as the most valuable aspects of the event.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;The PMRT presents a novel, structured, low-threshold platform for clinical-centered transdisciplinary dialogue, professional networking, and knowledge exchange in the field of digital health. Participant reception confirms high acceptance ","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e82786"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13043008/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147595054","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Co-Designing and Evaluating a Multimodal Digital Application to Enable People With Dementia to Self-Report Quality of Life Patient-Reported Outcome Measures: Co-Design Study and Summative Evaluation.","authors":"David Kernaghan, Kieren Egan, Marilyn Lennon, Roma Maguire","doi":"10.2196/87565","DOIUrl":"10.2196/87565","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Worldwide, there are an estimated 55 million people living with dementia, with an estimated cost to society of US $1.3 trillion a year. These numbers are predicted to rise, with the dementia population doubling every 20 years, reaching an estimated 152 million by 2050. There is currently no cure for dementia, with the condition having a significant impact on people's independence and quality of life (QoL). It is therefore vital that people living with dementia are given the support that helps them to manage these impacts and optimizes their QoL. To do this, a more personalized and detailed understanding of a patient's daily life is needed. Patient-reported outcome measures (PROMs) have long been associated with significant benefits in other domains, though the use of PROMs in routine dementia care is lacking. Factors such as platform design, literacy, language proficiency, and physical and mental capability can all severely impact the ability of people living with dementia to complete PROMs routinely.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aims to co-design and evaluate a novel multimodal digital application to enable people living with dementia to regularly self-report QoL PROMs. The research questions were (1) What features, questions, and modalities do people living with dementia prefer when interacting with a digital application that enables them to self-report QoL PROMs? (2) What are the design considerations and specifications for a digital application to enable people living with dementia to self-report QoL data via PROMs?&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;People living with dementia, informal caregivers (ICs), and health care professionals (HCPs) participated in iterative co-design workshops and a final summative evaluation to co-design a multimodal digital application from initial concepts to a functional prototype. Prototypes were presented using cognitive walkthroughs and think-aloud protocols, and data were analyzed following framework analysis using interaction design and features voted for by participants using MoSCoW (Must Have, Should Have, Could Have, Won't Have).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of 25 participants took part in this study (people living with dementia=9, ICs=4, and HCPs=12) developing and evaluating a total of 34 prototypes into a single final functional multimodal prototype that can collect PROMs using text, visuals, and voice.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;A functional prototype for a novel digital application was developed that enables people living with dementia to regularly self-report QoL PROMs, which was then successfully evaluated by people living with dementia, ICs, and HCPs. The prototype was co-designed with direct involvement from people living with dementia during every stage of development, and this is one of the first studies to evaluate perceptions from key stakeholders (including people living with dementia, ICs, and HCPs) regarding the use of elect","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e87565"},"PeriodicalIF":0.0,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13043077/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147595012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}