Journal of Participatory Medicine最新文献

{"title":"Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey.","authors":"Charlotte Blease, James Jones, Catherine E Blease, Anna Kharko, Carolina Garcia Sanchez, Kenneth D Mandl","doi":"10.2196/93720","DOIUrl":"10.2196/93720","url":null,"abstract":"<p><strong>Background: </strong>Generative artificial intelligence (GenAI) tools are widely accessible to the public, who are engaging with them for a wide range of health care applications. Existing research has focused predominantly on clinician-facing adoption. Far less is known about how patients and family members use GenAI tools, particularly in rare disease contexts, where diagnostic delay, limited specialist access, and unmet informational needs are common.</p><p><strong>Objective: </strong>This study aimed to examine the experiences and opinions of adult patients with rare diseases and parents or guardians of children with rare diseases regarding the use of GenAI tools.</p><p><strong>Methods: </strong>Between November 2025 and January 2026, we conducted an exploratory mixed methods web-based survey using convenience sampling through rare disease community organizations in the United States. The survey included closed-ended items assessing prior GenAI use, purposes of use, perceived influence on medical decisions and diagnoses, trust, concerns, communication with clinicians, and experiences of harm, alongside open-text questions capturing qualitative reflections. Descriptive statistics were used to summarize quantitative data. Inductive qualitative analysis was applied to the open-text responses.</p><p><strong>Results: </strong>A total of 115 respondents completed the survey. A majority of respondents were parents or guardians of a child with a rare disease (n=74, 64.3%), and the remaining respondents were patients with a rare disease (n=41, 35.7%). Slightly more than half of respondents (n=63, 54.8%) reported prior use of GenAI tools in the context of rare disease. Common purposes included exploring new treatments or clinical trials (n=53, 46.1%), interpreting medical tests or clinical notes (n=37, 32.2%), locating specialists or care centers (n=29, 25.2%), and suggesting possible diagnoses (n=28, 24.3%). Nearly one-third of respondents (n=37, 32%) reported some degree of influence of GenAI on their medical decisions. Nearly 10% (n=12) reported contributions of GenAI to a formal diagnosis. Concern about GenAI accuracy was widespread; 71 of 115 (61.8%) respondents reported moderate to extreme concern. Most respondents (n=90, 78.3%) had not discussed AI-generated information with a clinician. Few respondents (n=7, 6.1%) reported experiencing harm. Qualitative analysis identified 3 themes: (1) GenAI as a practical tool for augmenting patient and caregiver expertise and advocacy, (2) conditional trust and bounded use of GenAI with an emphasis on verification and human oversight, and (3) perceived risks, harms, and structural concerns, including inaccuracies, genetic misinterpretation, and privacy and commercialization issues.</p><p><strong>Conclusions: </strong>In this exploratory study, patients and families affected by rare diseases were actively experimenting with GenAI tools to support information seeking, preparation, and advocacy while","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e93720"},"PeriodicalIF":0.0,"publicationDate":"2026-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13399968/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148585314","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":"Experiences and Challenges of Patients With Chronic Respiratory Disease During a Virtual Research Study: Qualitative Study.","authors":"Noah Tregobov, Austin McMillan, Aditya Dhariwal, Y Sarah Chae, Bahareh Poureslami, Maryam Mahjoob, Joshua Block, Iraj Poureslami","doi":"10.2196/80216","DOIUrl":"10.2196/80216","url":null,"abstract":"<p><strong>Background: </strong>Virtual research has emerged as a promising and convenient approach. This study investigates the experiences and challenges faced by patients with chronic respiratory diseases who participated in a virtual research study.</p><p><strong>Objective: </strong>This study aimed to explore the experiences of adults with chronic respiratory diseases participating in a virtual research study and to identify challenges they encountered to inform future virtual research design and implementation.</p><p><strong>Methods: </strong>Adults with a diagnosis of asthma or chronic obstructive pulmonary disease taking medications for their condition were recruited from the Greater Vancouver Area. A total of 185 participants completed an asthma-specific or chronic obstructive pulmonary disease-specific health literacy measurement tool through telephone interviews and then completed a postinterview checklist (n=36) or survey (n=149) on their experience with virtual research. To test the health literacy tool's reproducibility, 110 participants were retested and completed the same checklist (n=79) or survey (n=31). Interviews were transcribed and thematic analyses were conducted on interviews, surveys, and checklists.</p><p><strong>Results: </strong>Six overarching themes were identified: overall experience with virtual research, clarity of instructions, technology, communication, condition and cognition, and logistics. While participants generally reported a positive experience, the study identified significant challenges, including technological barriers, the need for clear and concise instructions, mental fatigue, and communication difficulties.</p><p><strong>Conclusions: </strong>These findings highlight the importance of providing comprehensive technical support, ensuring clear communication, and addressing ethical considerations in virtual research. This study contributes valuable insights to the growing body of literature on the viability and challenges of virtual research in health care.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e80216"},"PeriodicalIF":0.0,"publicationDate":"2026-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13348803/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148425042","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":"Using Partner-Driven Maximum Variance Sampling to Form a Lived Experience Panel: Step-by-Step Tutorial.","authors":"Anna Jolliff, Teresa Thuemling, Jessica Arora, Geri L Baumblatt, Daniel J Digmann, Ursulá T Garcia-Mayes, Misty Hawkins, Sydney Hoel, Heather Janes, Nicole Orendain, Alan Richmond, Aracely Rosales, Pete Wendel, Nicole E Werner, Rupa S Valdez","doi":"10.2196/95145","DOIUrl":"10.2196/95145","url":null,"abstract":"<p><strong>Unlabelled: </strong>Research projects conducted in collaboration with patients and caregivers are more rigorous, relevant, and impactful within the communities of focus. One mechanism for facilitating patient and caregiver engagement in research is through a lived experience panel (LEP)-an intentionally assembled group of people with personal experience relevant to the research topic. LEPs can engage in any or all aspects of the research project, from study ideation to participant recruitment to dissemination and translation of findings. Fully realizing the potential of an LEP to inform the research process requires intentionality in LEP composition, as members should align with the range of lived experiences in the community of focus. Mechanisms to recruit patient or caregiver advisors for research may require researchers to reach beyond pre-existing relationships if they intend to achieve maximum variability. However, explicit processes for forming a maximally variable LEP are scarce. In this guide, we outline an LEP formation process that includes laying the foundation for recruitment with academic and community partners; collaboratively developing promotional materials and an interest survey; using community-embedded promotional channels to share information about the LEP opportunity; and selecting interviewees and LEP invitees using a process called maximum variance sampling. Outcomes of our LEP formation process include the relative productivity of each promotional channel, the specific timeline from LEP ideation to formation, the sociodemographic variability of our applicants, and real LEP members' feedback on the formation process. We conclude by highlighting what we perceive as keys to success, including collaboration with trusted community partners and a thoughtfully designed interest survey that enabled us to narrow a large applicant pool to a diverse set of invitees. We also describe challenges and lessons learned, including opportunities to better articulate LEP responsibilities during interviews and ways to navigate the tensions inherent in selecting members based on maximum variance. Researchers are encouraged to invest time and resources into building relationships with community partners, knowing that these relationships lay the groundwork for reaching diverse patients and caregivers to advise research.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e95145"},"PeriodicalIF":0.0,"publicationDate":"2026-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13308908/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148340099","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":"Enhancing Patient Participation in Co-Productive Decision-Making With Personal Value Sets: Clinical Trial Prototype.","authors":"Jack Dowie, Mette Kjer Kaltoft, Vije Kumar Rajput","doi":"10.2196/81623","DOIUrl":"10.2196/81623","url":null,"abstract":"<p><p>A new approach has been developed to establish the public value (utility) set for the generic health measure used in quality-adjusted life year estimates. In contrast to conventional approaches, it establishes the complete utility set for an individual and aggregates a sample of these to achieve the public set. The novel way of establishing the complete utility set for an individual has the potential to transform the nature and extent of a patient's participation in the clinical decision-making process. We have modified the online elicitation of personal utility functions approach to overcome its impracticalities in a clinical consultation. The main modification is the replacement of choice-based items by scale-based ones, on the grounds that the former's time and cognitive demands, while tolerable in the research context, make it infeasible in practice. The personal utility set for healthcare (PUSH) approach, like the online elicitation of personal utility functions one, may be used with any multidimension, multilevel instrument, including condition-specific ones, but the empirical application here is with the health-related quality of life instrument EQ-5D-5L. PUSH for EQ-5D-5L is a decision support tool in the form of a spreadsheet workbook. The clinician assists nondirectively in the elicitation of the patient's utility set for EQ-5D-5L. Subsequently, the clinician, drawing on the best available evidence and information, enters the EQ-5D-5L states they judge, on the balance of probabilities, the patient will be in (at an agreed future time point), for specific interventions, plus no intervention. The relevant country's public set utility for each displayed health state is simultaneously revealed. (Those for 13 countries are in the current template.) It is envisaged that the clinician holds the PUSH template on their computer and opens a new copy for use with each patient. They agree with the patient on what, if anything, is to be saved as part of their electronic medical record. The deliberation following engagement with PUSH and personalized evaluation of the contemplated interventions will typically involve sensitivity testing and possible revision of the patient and clinician inputs. One key responsibility of the clinician is to dispel any \"aura of exactness\" or pseudo-precision that may be created by the use of precise percentages (or values to 2 decimal places). PUSH participation is to be seen as a component of deliberative co-productive decision-making to which both parties contribute significantly but in role-appropriate ways. The outputs are intended to provide a useful, analysis-framed input into the subsequent discussion and co-produced decision. As a major clinical innovation that transforms both patient participation and clinician contribution, it is advanced here for the discussion and critique that will enable a conceptually sound trial protocol to be developed (including clinician tutoring).</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e81623"},"PeriodicalIF":0.0,"publicationDate":"2026-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13320008/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148266439","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":"Mapping Peer Support in Antidepressant Discussions on Reddit: Pilot Network Analysis.","authors":"Ejura Yetunde Salihu, Apoorva Reddy","doi":"10.2196/85812","DOIUrl":"10.2196/85812","url":null,"abstract":"<p><strong>Background: </strong>Antidepressant use and withdrawal are often accompanied by side effects such as dizziness, weight gain, and sexual dysfunction. Antidepressants and their associated side effects are stigmatized topics. Social media platforms such as Reddit are considered \"safe spaces\" by users because they can freely share their experiences and receive support.</p><p><strong>Objective: </strong>This pilot study analyzed discussions from the subreddit r/depression to examine how users discuss antidepressant side effects, withdrawal symptoms, and related experiences of depression.</p><p><strong>Methods: </strong>We scraped 10 high-engagement threads from the subreddit r/depression using the Python wrapper for the Reddit application programming interface and conducted a 2-step analysis. First, a pilot test was performed using sertraline (Zoloft) threads, followed by an analysis of all antidepressant-related threads. A subset of the data was hand-coded to create and validate regular expressions, which were then used to automatically code the remaining dataset. The resulting coded data were analyzed using epistemic network analysis and complemented with qualitative analysis and elements of semantic networks and hypergraphs.</p><p><strong>Results: </strong>We found that posts were more likely to discuss emotional flattening, sleep, and memory or cognitive issues (Mann-Whitney U=33,235.5; P=.003). Additionally, references to dizziness tended to co-occur with discussions of withdrawal and offers of empathy, while reports of dream-related side effects and requests for personal experiences also co-occurred frequently. By incorporating elements of semantic networks and hypergraphs, we deduced that offers of empathy occurred when users said they experienced dizziness caused by withdrawal, while mentions of \"brain zaps\" associated with withdrawal often co-occurred with offers of teaching support.</p><p><strong>Conclusions: </strong>Study findings highlight how individuals experiencing antidepressant side effects and withdrawal symptoms use online forums such as Reddit to seek validation, share coping strategies, and provide emotional support to others. The nuanced discussions observed, particularly those related to empathy, symptom management, and shared learning, underscore the role of peer-to-peer networks in normalizing stigmatized experiences and mitigating isolation associated with antidepressant use. Clinicians and digital health practitioners can leverage these insights to better understand patient language, emotional framing, and informational needs outside clinical settings.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e85812"},"PeriodicalIF":0.0,"publicationDate":"2026-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13263020/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148240132","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":"Evaluation of a Digital Intervention to Improve the Health Outcomes of Older Adults: Secondary Data Analysis.","authors":"Jowinn Chew, Georgina Bartlett, Lily Hopkins, Dan Frings","doi":"10.2196/62748","DOIUrl":"10.2196/62748","url":null,"abstract":"<p><strong>Background: </strong>The health of aging populations is among the top challenges facing global health systems. The use of mobile health (mHealth) approaches has been found to be effective in prompting changes and has been identified as a potentially valuable tool to enhance health behaviors among older adults.</p><p><strong>Objective: </strong>This study sought to explore the efficacy and acceptability of a personalized mHealth app for older adults, focusing on well-being, mental and physical health, and relationship with food.</p><p><strong>Methods: </strong>This secondary data analysis examined outcomes of real-world Holly Health users who enrolled between August 2022 and January 2023.</p><p><strong>Results: </strong>Results showed that, after the intervention, self-confidence, energy, mindfulness, health mindset, and short- and long-term mindset all improved. Furthermore, the personalized mHealth app showed a good level of acceptability among the participants.</p><p><strong>Conclusions: </strong>Engaging with this digital health intervention improved several aspects of physical and mental health, adding to existing evidence that effective and accessible tools are needed to promote healthy aging.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e62748"},"PeriodicalIF":0.0,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13240981/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148176891","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":"Participatory Digital Twins for Chronic Care: From Predictive Models to Shared Sensemaking.","authors":"Qingrui Li, Bo Xie, Eric Johnson, Juan Li","doi":"10.2196/92721","DOIUrl":"10.2196/92721","url":null,"abstract":"<p><strong>Unstructured: </strong>Health digital twins, computational models that integrate longitudinal data, simulation, and forecasting, are increasingly proposed as tools for chronic care management. Most current implementations, however, are expert-oriented, prioritizing technical optimization and clinical prediction while offering limited support for patient understanding, engagement, or participation. This orientation is particularly misaligned with chronic care, which unfolds largely outside clinical settings and depends on patients' daily decisions, social context, and sustained engagement over time. In this Viewpoint, we argue for reframing digital twins as participatory systems that support shared sensemaking among patients, caregivers, and clinicians, rather than functioning solely as directive, expert-facing tools. We propose a conceptual framework that positions participatory digital twins as boundary objects capable of bridging computational models, clinical reasoning, and lived experience. Within this framework, generative artificial intelligence serves as a translation and interaction layer, enabling plain-language dialogue, exploration of uncertainty, and \"what-if\" reasoning that allows users to interpret model outputs in relation to their own contexts, goals, and constraints. We outline key design principles for participatory digital twins, including visible uncertainty, negotiated rather than prescriptive care, mechanisms for incorporating patient context and social drivers of health, and governance structures that support accountability and recourse. At the same time, this approach depends on meaningful opportunities for participation, appropriate safeguards around generative interaction, and careful attention to privacy, consent, and uneven access to digital resources. By shifting the focus from optimization alone to understanding, interaction, and trust, participatory digital twins offer a pathway toward more equitable, human-centered, and sustainable models of AI-enabled chronic care.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13290167/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148144867","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":"Real-World Data Needs Real-World Doctors: When Automation Advances Faster Than Clinical Workflow.","authors":"Amy Price, Christine Von Raesfeld","doi":"10.2196/97972","DOIUrl":"10.2196/97972","url":null,"abstract":"<p><strong>Unlabelled: </strong>Health care is entering an era of unprecedented detection. Artificial intelligence (AI)-driven monitors and real-world data streams now identify clinical risks in minutes, promising a future of proactive, earlier intervention. While AI automation is often marketed as a tool to reduce administrative burden and allow health care providers to focus more on direct patient care, this unrealized potential currently stands in contrast to our reality. Building high-speed data \"freeways\" without \"off-ramps\" such as clinical staffing, workflow synergy, and the patient education required for meaningful response is like building a superhighway without well-engineered off-ramps to provide a safe way to get home, and this creates a dangerous paradox. Earlier detection without earlier care does not improve outcomes; it simply redistributes anxiety and extends the patient's period of uncertainty. We argue that the \"public as a sensor\" is already signaling a systemic infrastructure gap. True safety in clinical AI isn't found in more algorithmic guardrails, but in participatory co-design that ensures every digital alert has a viable human pathway to care and resolution. We must stop building high-speed roads that lead to a cliff edge of clinical unavailability and consider that while the technology is a feat of engineering, it's our human architecture that makes it medicine.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e97972"},"PeriodicalIF":0.0,"publicationDate":"2026-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13221120/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148057360","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":"Experiences and Perceptions Within a Co-Created Drone Transport Initiative With Rural First Nation and Non-First Nation Communities: Semistructured Interview Study.","authors":"Audrey Warner, Sandy Lee, John Pawlovich, Terri-Leigh Aldred, Michael Allard, Dave Christie, Alison James, Dave Kang, Kimia Nouhi, Larry D Lynd, Robert Michell, Adam Patrick, Edward Ratnarajah, Anurag Singh, Sarrah Storey, Femke Hoekstra","doi":"10.2196/82720","DOIUrl":"10.2196/82720","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;People living in rural areas of British Columbia experience inequities in access to health care that impact health and well-being. Since time immemorial, Indigenous peoples have had a holistic understanding of health and wellness, and knowledge of healthful ways of living. However, in a rural context, Indigenous peoples contend not only with inequitable access to health care, but also with the historical and ongoing impacts of colonization. Virtual health innovations enable access to care closer to home, yet the need for diagnostic tests and essential medicines remains limited by supply chains. In this context, transport of medical supplies by drone offers a promising solution and has the potential to improve access to health care in rural and First Nations communities in British Columbia.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;The Drone Transport Initiative is a co-created health care innovation project between the Stellat'en First Nation, the Village of Fraser Lake, the University of British Columbia, and other health system partners that investigated the feasibility of drones to transport medical supplies in a rural British Columbian context. This analysis aimed to understand the experiences and perceptions of the Project Team, people directly involved in the Initiative.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Twenty members of the Project Team, including representatives from the Steering Committee and Operational Team having diverse roles within the project, participated in semistructured interviews. Eleven interviews were conducted either individually (n=5), in pairs (n=5), or in a group of 5 (n=1). Interviews were audio-recorded, transcribed verbatim, and anonymized. A reflexive thematic analysis was conducted to understand the Project Team's experiences and perceptions of the project. Initial results were shared with coauthors, including project cosponsors and community members, to interpret the findings and formulate discussion topics.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Participants generally expressed positive experiences from being part of the Drone Transport Initiative, despite remarking on various challenges. Major themes derived from the analysis centered upon (1) building respectful and trusting relationships, (2) mutual benefits that enabled effective and engaged partnerships, (3) meaningful community engagement that facilitated community acceptance and ownership of the project, and (4) this project is \"the first step of something big.\" Themes were further divided into subthemes characterized as processes or outcomes.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;In this work, we highlight a health innovation project grounded in relational approaches and partnerships, where rural and First Nations communities are champions of advancing their development goals and co-creating solutions that address key social determinants of health. We contribute to the literature by emphasizing the relational foundation that is necessary at t","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e82720"},"PeriodicalIF":0.0,"publicationDate":"2026-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13220978/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148057363","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":"Peer-Led Emotional CPR Program in Black, Indigenous, and People of Color Communities: Convergent Mixed Methods Study.","authors":"Mbita Mbao, Karen L Fortuna","doi":"10.2196/80029","DOIUrl":"10.2196/80029","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Black, Indigenous, and people of color (BIPOC) experience disproportionately negative mental health outcomes, including rising suicide rates, and persistent barriers to culturally responsive care. Systemic racism, discrimination, and historical trauma contribute to mistrust of traditional mental health systems. Peer-led approaches that center lived experience and shared cultural identity may offer culturally responsive alternatives that foster emotional connection and trust.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study examined pretraining to posttraining changes in emotional well-being, empowerment, and interpersonal outcomes among BIPOC participants who completed Emotional CPR (Emotional Connection, Empowering, Revitalizing), a trauma-informed, peer-led mental health education program facilitated by BIPOC trainers.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A convergent mixed methods pre-post design was used. Eighty-five BIPOC participants completed validated self-report measures immediately before and after a 12-hour web-based Emotional CPR training delivered over 3 consecutive days. Outcomes included loneliness, empowerment, flourishing, hope, active-empathic listening, mindfulness, social connectedness, and affect. Paired-samples 2-tailed t tests examined pre-post differences. Seventeen participants participated in 2 posttraining focus groups conducted through Zoom. Qualitative data were analyzed using thematic analysis informed by phenomenological principles. Quantitative and qualitative findings were integrated during interpretation.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Participants (N=85; mean age 41.9, SD 11.2 years; women: n=65, 76.5%) reported significant reductions in loneliness (P=.03; d=0.25) and significant increases in positive affect (P=.002; d=-0.37). Significant declines were observed in empowerment (P=.03; d=0.26), active-empathic listening (P=.02; d=0.26), flourishing (P=.02; d=0.27), and hope (P&lt;.001; d=0.41). No significant changes were observed in social connectedness or mindfulness. Qualitative themes included empowerment through skill-building, emotional vulnerability, cultural trust and safety, challenges in sustaining confidence after training, and the application of skills in daily life. Participants described increased self-awareness and emotional openness, particularly within a culturally responsive training environment. Qualitative findings suggested that increased emotional awareness may have influenced posttraining self-assessments.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Participation in BIPOC-facilitated Emotional CPR training was associated with short-term reductions in loneliness and increased positive affect, alongside modest declines in self-rated empowerment and hope. Qualitative findings suggest that increased emotional awareness and engagement with systemic stressors may temporarily influence self-perceived competence. Ongoing reinforcement, mentorship, and follow-up sessions may support sust","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e80029"},"PeriodicalIF":0.0,"publicationDate":"2026-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13218562/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148057346","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}