Journal of Participatory Medicine最新文献

{"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":"https://doi.org/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":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147821789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","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":"https://doi.org/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":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147821727","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","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":"https://doi.org/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":"https://doi.org/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":"https://doi.org/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}

{"title":"A Care Transitions Electronic Clinical Pathway for Patients With Chronic Conditions: Qualitative Secondary Analysis.","authors":"Joanne Roman Jones, Hongyi Wu, Christian J Tejeda, Allison B McCoy, Lipika Samal, Patricia C Dykes","doi":"10.2196/83235","DOIUrl":"10.2196/83235","url":null,"abstract":"<p><strong>Background: </strong>Understanding patient educational requirements for care transitions is crucial for ensuring safe and effective care for patients with multiple chronic conditions (MCCs).</p><p><strong>Objective: </strong>Within a larger study developing an electronic clinical (e-clinical) pathway to support the safe transition for patients with MCCs from hospital to home and then to primary care, this study identified, evaluated, and integrated content to meet the educational requirements of potential end users of the e-clinical pathway. Participants in the primary study described preferred education content, education considerations, and education presentation and display.</p><p><strong>Methods: </strong>This study conducted a secondary qualitative analysis of transcripts from individual interviews (n=12 health care providers and staff) and focus groups (n=11 patient advisors) by using an inductive/deductive hybrid thematic analysis to explore the educational requirements of patients with MCCs for the e-clinical pathway.</p><p><strong>Results: </strong>We identified the following themes regarding specific education requirements for MCC transitions: (1) essential end-user education includes condition-specific, nutrition-specific, and medication-related content; (2) education must be truthful, accessible, and consider end-user health literacy; and (3) education presentation can be enhanced with graphics, reminders, and end-user resources.</p><p><strong>Conclusions: </strong>The findings were used to develop an educational pathway with targeted and tailored content to support patients with MCCs as they transition from acute hospitalization back to their primary care provider, which was implemented in the study app. Study findings contribute to a more nuanced understanding of end-user education requirements and informed enhancements to the patient-facing app used in the primary study.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e83235"},"PeriodicalIF":0.0,"publicationDate":"2026-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13069371/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147533453","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":"Community Perceptions of Integrating Community Health Workers and Telehealth Services for Chronic Disease Management in a Rural Island Community: A Qualitative Study.","authors":"Jose G Perez-Ramos, Scott McIntosh, Joselyn Wei Chen, Jessica Alicea-Vellon, Carlos E Rodriguez-Diaz","doi":"10.2196/86907","DOIUrl":"10.2196/86907","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Rural and isolated communities, such as Culebra, Puerto Rico, face significant health care challenges due to geographic isolation, limited medical resources, and socioeconomic disadvantages. Chronic diseases, particularly diabetes and hypertension, are highly prevalent and contribute to poor health outcomes. Telehealth services (THS) and community health workers (CHWs) have been identified as effective interventions for improving health care access in underserved areas. This study is grounded in the principles of community-oriented primary care, which emphasizes the integration of primary care and public health for a defined community, and positions the combination of CHWs and THS as a practical application of this model in an isolated island setting.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aimed to explore community perceptions and attitudes toward integrating THS with the support of CHWs to improve chronic disease management in Culebra, Puerto Rico.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A qualitative study using semistructured individual interviews was conducted with 20 patients from Culebra's Federally Qualified Health Center. Interviews were guided by the socioecological model to assess community perspectives at the individual, interpersonal, community, and societal levels. Thematic analysis was conducted using Dedoose by the principal investigator and a research assistant, with coding discrepancies resolved through negotiated agreement. Translation and back-translation of themes followed the Brislin method. The study adhered to the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Thematic analysis revealed three primary themes: (1) the pervasive impact of social determinants of health on daily life and health care access, (2) the valued and trusted role of CHWs in the community, and (3) the dual potential and challenges of THS. CHWs were recognized as critical for improving health care access through appointment assistance, medication management, and emotional support. THS was viewed positively for its potential to reduce transportation barriers and improve continuity of care, although concerns regarding technology access, convenience, and data privacy were also raised. The integration of CHWs and THS was broadly viewed as a promising and trustworthy solution to chronic disease management challenges.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This study highlights the potential of an integrated CHW-assisted THS model as a practical application of community-oriented primary care principles in isolated island communities. The combination of CHWs and THS shows promise for reducing health care disparities and improving chronic disease management. Future research should focus on implementing and evaluating this model through participatory approaches, assessing clinical outcomes and cost-effectiveness, while policy efforts should prioritize THS infrastructure inves","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e86907"},"PeriodicalIF":0.0,"publicationDate":"2026-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13002157/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147487751","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-Time Cardiac Biofeedback Intervention: Experiences of Patient and Public Involvement in a Randomized Controlled Trial.","authors":"Marina Bobou, Michal Tanzer, Alkistis Saramandi, Caroline Selai, Paul M Jenkinson, Aikaterini Fotopoulou","doi":"10.2196/84737","DOIUrl":"10.2196/84737","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement (PPI) is crucial for enhancing research quality and relevance and addressing health inequalities. PPI ensures that studies tackle relevant and meaningful questions, as there is a recognized need by the research community to document and share PPI studies to advance the field and encourage the adoption of such activities.</p><p><strong>Objective: </strong>The study aimed to provide a detailed report on the PPI activities undertaken to develop and implement a randomized controlled trial of a novel therapeutic tool designed to increase interoception and metacognition (ie, the Interoceptive Insight and Metacognitive Efficacy beliefs [InMe] trial).</p><p><strong>Methods: </strong>The InMe trial integrated insights from experts by experience, as well as from clinical and academic experts. This collaborative approach resulted in the development of a comprehensive trial across 4 main stages-design, delivery, results interpretation, and future planning.</p><p><strong>Results: </strong>Here, we highlighted the unique insights and the added value in incorporating PPI activities into our trial development and implementation, while reporting challenges and shortcomings that were identified throughout this process.</p><p><strong>Conclusions: </strong>PPI activities within the InMe trial led to meaningful changes, while collaborators expressed satisfaction and increased interest in interoception research. Further improvements on how to best support experts by experience when sharing their experiences were also identified.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e84737"},"PeriodicalIF":0.0,"publicationDate":"2026-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12981545/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147445268","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}