Journal of Participatory Medicine最新文献

{"title":"Living the Masterclass: Multiple Sclerosis Patient Journeys and the Reality of Participatory Medicine.","authors":"Mary Hennings, Meredith O'Brien, Johanna Hising DiFabio, Jennifer Southard, Daniel van Leeuwen","doi":"10.2196/94593","DOIUrl":"10.2196/94593","url":null,"abstract":"<p><strong>Unlabelled: </strong>This reflective article, written collaboratively by 4 people living with multiple sclerosis (MS)-Johanna Hising DiFabio, Meredith O'Brien, Jennifer Southard, and Danny van Leeuwen-with Mary Hennings of the Society for Participatory Medicine, distills insights shared at a March 2025 event cohosted with Northeastern University's Bouvé College of Health Sciences. The panelists speak as experts on their own lived experience, tracing the arc from diagnosis to what they call \"optimal living\" with a complex, unpredictable disease. The piece begins with the diagnostic journey itself, describing a \"double trauma\": the anguish of unexplained physical decline before diagnosis, followed by the weight of confronting a confirmed chronic illness. The authors argue that how clinicians deliver and support a diagnosis determines whether patients end up isolated or drawn into genuine partnership with their care team. A central theme is the search for the right clinician fit-not just competence, but shared communication style and mutual respect for the patient's expertise in their own life. The authors describe practices that support this, such as setting the visit agenda in advance through patient portals, and stress that patient engagement styles vary: some patients want deep involvement in research, while others prefer to delegate, but all need a clinician who genuinely listens. The article expands the notion of a care team beyond medical clinicians, describing three layers: the medical core, a complementary team (bodywork, movement, nutrition specialists), and a personal network of family and friends providing emotional support. It also names systemic frictions, like patients having to relay information among clinical specialists who don't communicate with each other. A recurring message is resisting being reduced to the disease. The authors describe both the comfort and sting of comments like being told they \"don't look sick.\" They also share personal strategies for preserving identity and quality of life, from adapting a musical instrument to accommodate physical limitations, to writing and publishing patient narratives, to using organizational resources like the National MS Society to navigate research and advocacy. The article closes with practical counsel for newly diagnosed patients: stay engaged, insist on true clinical partnership, build a broad support ecosystem, and protect the personal choices that give life meaning. It affirms the core principle of participatory medicine-that patients and clinicians grow together, with the patient retaining ownership of their own body and life.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e94593"},"PeriodicalIF":0.0,"publicationDate":"2026-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13649172/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149138552","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":"Patient Preparation in Walk-in Clinics Through the Implementation of a Consultation Preparation Sheet: Qualitative Study.","authors":"Juliette Borges, Claude Richard, Marie-Hélène Goulet, Marie-Eve Lavoie, Viviane Tran, Clara Dallaire, Marie-Thérèse Lussier","doi":"10.2196/83489","DOIUrl":"10.2196/83489","url":null,"abstract":"<p><strong>Background: </strong>Effective communication is essential for high-quality care, yet in walk-in clinics, patients often have limited time to prepare, and physicians face challenges in understanding patients' needs due to lack of prior contact. To address this, a consultation preparation sheet (CPS) was developed to help patients articulate their symptoms, concerns, and expectations.</p><p><strong>Objective: </strong>This study aimed to explore the implementation and perceived usefulness of a CPS designed to support patient preparation during walk-in clinic consultations.</p><p><strong>Methods: </strong>We conducted a qualitative exploratory study using semistructured interviews and focus groups, with data collection informed by the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework and the PACE (prepare, ask, check, and express) method. The CPS was implemented over 9 months (January-October 2019) in a university-affiliated walk-in clinic in Quebec, Canada. During this period, 3115 patients received the CPS in the waiting room. Of the 23 patients who expressed interest in further participation, 12 were recruited for interviews. Additional participants included 2 physicians, 2 administrative staff, 2 nursing assistants, and 1 clinic manager. In total, 6 interviews and 5 focus groups were conducted. Data were transcribed verbatim and thematically analyzed, with AI-assisted review used as a supplementary check on data coverage.</p><p><strong>Results: </strong>Patients generally found the CPS helpful for organizing their thoughts, reducing stress, and avoiding omissions during consultations. It was considered particularly useful for patients with multiple concerns or communication difficulties. However, physicians rarely referred to the CPS, often preferring direct verbal exchanges. This lack of acknowledgment sometimes frustrated patients and diminished their perception of its usefulness. Organizational challenges-including inconsistent distribution, lack of explanation, and an unclear workflow-further hindered implementation. Participants suggested clearer communication about the CPS's original purpose, earlier access through electronic formats, and brief clinician acknowledgment when patients chose to share their priorities.</p><p><strong>Conclusions: </strong>The CPS shows promise as an optional patient-preparation tool for walk-in consultations. Earlier access and a clear explanation may support its use without requiring formal clinician review; brief acknowledgment may suffice when patients choose to share their priorities. Future studies should assess improved practice implementation strategies and digital adaptations.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e83489"},"PeriodicalIF":0.0,"publicationDate":"2026-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13648944/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149138602","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":"Cocreation of Digital Outcome Measures for Dravet Syndrome: Multistage Co-Design Feasibility Study.","authors":"Navdeep Sahota, Simona Giorgi, Ana Cantó Martínez, Naiara Sánchez Marco, Elisa Ferrer Mallol, Elin Haf Davies, José Ángel Aibar","doi":"10.2196/92512","DOIUrl":"10.2196/92512","url":null,"abstract":"<p><strong>Background: </strong>Dravet syndrome is a complex developmental and epileptic encephalopathy characterized by treatment-resistant seizures and multiple comorbidities that significantly affect quality of life. Traditional clinic-based assessments often fail to capture real-world functional abilities and behavioral changes.</p><p><strong>Objective: </strong>This study aimed to (1) identify caregiver-prioritized meaningful aspects of health, (2) co-design digital assessment modalities for home use, and (3) generate preliminary usability and implementation insights to inform future clinical research.</p><p><strong>Methods: </strong>A multistage patient and public involvement activity was conducted between November 2023 and October 2025 in Spain, in collaboration with a patient advocacy organization and a digital health company. Participants were recruited through the Fundación Síndrome de Dravet using a convenience opt-in sampling approach. The process included a caregiver survey to identify meaningful aspects of health, a design workshop to refine priorities and technology preferences, and a 2-week usability testing of a prototype app, followed by a feedback workshop. Data were analyzed descriptively to inform iterative cocreation; no hypothesis testing was performed.</p><p><strong>Results: </strong>Fifty caregivers completed the survey. Neuropsychiatric symptoms (17/48, 35%), independence (16/48, 33%), and social or leisure activities (15/48, 31%) were the most commonly reported affected domains. Eight caregivers participated in the design workshop, emphasizing flexibility, age-appropriate tasks, and reduced reporting burden. Usability testing was conducted with 5 caregivers over 2 weeks, with 4 of 5 caregivers providing feedback. Participants reported a generally positive reception of the digital tools, particularly customizable task selection and open-text fields, while identifying challenges related to video-recording logistics and questionnaire repetition. Feedback underscored the need for simplified workflows and individualized approaches to maintain engagement.</p><p><strong>Conclusions: </strong>Cocreation with caregivers is feasible and appears essential for developing meaningful digital outcome measures for Dravet syndrome. Video-based tasks and remote reporting tools show promise for capturing motor, cognitive, and behavioral domains beyond seizure frequency. Future work should focus on iterative refinement and formal validation of these measures as end points in clinical trials, ensuring that they reflect outcomes that matter most to patients and families.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e92512"},"PeriodicalIF":0.0,"publicationDate":"2026-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13614624/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149064983","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 Parent-Facing Decision Aid About Childhood Vaccination: Co-development Study Adapting a Shared Decision-Making Approach to Support Evidence-Guided Decision-Making.","authors":"Daphne Bussink-Voorend, Lisa Vandeberg, Jeannine LA Hautvast, Glyn Elwyn, Marlies Ejl Hulscher","doi":"10.2196/90729","DOIUrl":"10.2196/90729","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Childhood vaccination rates are declining, and more parents are becoming hesitant about vaccinating their children. Higher levels of vaccine hesitancy occur among parents with lower levels of educational attainment, who are also likely to have lower levels of health literacy.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;We aimed to develop a web-based decision aid, considered a shared decision-making (SDM) approach, to inform and support Dutch parents in their decision-making about routine childhood vaccination, prioritizing the needs of hesitant parents and those with lower health literacy. We adapted the traditional SDM approach by balancing the ethical tension between the collective responsibility for public health and individual autonomy in vaccination decisions and focused the decision aid on evidence-guided (rather than preference-sensitive) decision-making.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The development process involved content development and web application development. We adopted a user-centered approach by actively engaging stakeholders, including parents, health professionals, and other experts. Participating stakeholders were purposefully selected and engaged through different routes to include a variety of perspectives. The general concept of vaccination as an evidence-based intervention to promote health at the individual and societal levels remained central throughout the development process.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;We conducted this project in the Netherlands from early 2023 through the end of 2024. We identified parental needs through interviews with 18 parents and a literature assessment. Parental needs, evidence-based information about vaccination, and how to communicate about vaccination informed the initial content of the decision aid. After feedback from the advisory group and subject matter experts, we refined the draft. At this stage, the textual content was inserted into a prototype web application. We subjected this prototype to 3 iterative cycles of testing, review, and adaptation. We analyzed and discussed the issues identified during testing and recommended adaptations to improve the design, structure, and content of the decision aid. These adaptations were subsequently discussed with the advisory group before being implemented. In response to the issues raised, we shortened the text blocks, replaced written information with visual elements, and restructured the layout to improve navigation. The final prototype consisted of the modules \"Information\" and \"Decision Support.\"&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;We co-developed a parent-facing decision aid (PDA) for childhood vaccination tailored to the needs of hesitant parents and those with lower health literacy. Through this intervention, we adapted an SDM approach to evidence-guided decision-making, creating space for individual concerns and deliberations without compromising evidence-based recommendations. Future research should focus ","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e90729"},"PeriodicalIF":0.0,"publicationDate":"2026-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13583497/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148881628","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":"Understanding Recovery Colleges Through Partaker Narratives: Qualitative Diary-Interview Study.","authors":"Marloes M C van Wezel, Christien Muusse, Jenny Boumans, Floris J A Scheerstra, Danny van der Spek, Judith Lize, Kelly Leunen, Dike van de Mheen, Hans Kroon","doi":"10.2196/89886","DOIUrl":"https://doi.org/10.2196/89886","url":null,"abstract":"<p><strong>Background: </strong>Recovery colleges (RCs) facilitate peer-supported learning communities where people experiencing mental disruption work on recovery. How recovery processes unfold, especially within RCs, remains insufficiently understood.</p><p><strong>Objective: </strong>Using a narrative approach, this study scrutinized how recovery processes unfold for RC partakers within RCs and in their everyday lives, and what RC attendance means in those processes.</p><p><strong>Methods: </strong>This study's design, recruitment, data collection, analysis, and manuscript drafting were co-created with experiential researchers (ie, RC partakers). Following an interview study (N=26), a diary-interview study was conducted (N=5) between November 2022 and January 2023. RC partakers completed qualitative diaries for 1 or 2 months, every other day, and reflected on this diary period in an evaluative interview (conducted by an academic and an experiential researcher). Recovery narratives of 3 diary participants (Emma, Robin, and Norah) are presented.</p><p><strong>Results: </strong>For Emma, peer-to-peer contact within the RC helps rebuild a supportive social network and stimulates her to face her anxieties. Robin described how RC attendance offers new perspectives, invites her to trust her own judgments, and reconsider possibilities such as paid employment. Norah's narrative illustrates how RC partaking in various capacities supported a shift in her identity from feeling like a failure to seeing herself as a valuable contributor. Considering all narratives, a cross-case analysis foregrounded the value of experiential knowledge in the recovery processes of the RC partakers. Two mutually reinforcing learning processes were identified: learning by exchanging and learning by doing. It also became clear that the RC explicitly facilitated contexts in which these processes can unfold, as partakers experienced recognition, inspiration, hope, perspective, supportive structures, and social safety. Experiences stemmed from learning processes and acted as catalysts for further learning. Importantly, these processes were not linear: partakers also experienced challenges in their everyday lives and within the RC.</p><p><strong>Conclusions: </strong>Our findings underscore the value of RCs in landscapes of mental care and support as they explicitly facilitate space for exchanging experiences among peers and experimenting with new behaviors. We illustrate the importance of investigating supportive processes and contexts to understand how recovery unfolds. We also present practical implications for RC offerings and participatory health initiatives more broadly.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e89886"},"PeriodicalIF":0.0,"publicationDate":"2026-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13476009/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148761334","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":"Inside or Outside? A Qualitative Comparative Study of 2 Recovery Colleges in Sweden and Norway.","authors":"Lina Al-Adili, Ragnhild Jensen Roaldseth, Henning Pettersen, Mats Brommels","doi":"10.2196/91076","DOIUrl":"10.2196/91076","url":null,"abstract":"<p><strong>Background: </strong>Recovery colleges (RCs) provide users of mental health services with self-management and coping skills, along with actions to promote social inclusion and reduce stigma. Research shows that recovery principles in mental health have the potential to improve services, but are poorly implemented. Better knowledge and understanding of RCs among mental health staff might help in addressing this challenge.</p><p><strong>Objective: </strong>In order to shed light on that assumption, the study compares 2 RCs that differ in their formal relationship with the mental health service-1 \"embedded\" and 1 \"freestanding.\" This comparative study aims to uncover whether there are differences in the perceived value of the RCs by participants, and in mental health staff views on the benefits and challenges related to RCs, and the potential for collaboration.</p><p><strong>Methods: </strong>The design is an explanatory comparative case study. Thick descriptions of the cases were based on document analysis and stakeholder interviews, subjected to content analysis. A \"strategic change management model\" guided data collection and analysis. Empirical patterns demonstrating the character and interrelations of the context, content, process, and outcome were identified in the case descriptions, forming tentative explanations of benefits and challenges observed.</p><p><strong>Results: </strong>RC participants reported some differences in experiences possible to relate to course content. Information on mental health services enabled a more efficient use of those resources. A focus on communication and coping strategies helped in building bonds and relationships and finding support in social networks. Both RCs supported empowerment and reduced the sense of stigma. Mental health professionals had a positive image of the RCs but were not well informed about their activities. Few saw the college as an activity that could complement their professional services but had interesting reflections on their workplaces in relation to recovery. Exposure to an RC could support a reorientation from \"diagnosis-centered\" to a more patient-centered care culture. Users offering peer support could be \"go-betweens\" and \"bridge builders\" to mental health services.</p><p><strong>Conclusions: </strong>Mental health staff aware of RCs and having knowledge of their benefits will provide support and guide users to participate. Such positive experiences are more important as a promoter of collaboration with users and the interest to contribute to a recovery-oriented care culture than the organizational form of the RC and its formal link to mental health services.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e91076"},"PeriodicalIF":0.0,"publicationDate":"2026-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13460067/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148713895","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 Architect of Trust: Dr Tom Ferguson's Legacy.","authors":"Amy Price, Dave deBronkart","doi":"10.2196/97659","DOIUrl":"10.2196/97659","url":null,"abstract":"<p><strong>Unlabelled: </strong>This article serves as a formal tribute to the legacy of Dr Tom Ferguson and his foundational 2007 white paper on the \"e-patient.\" Despite its widespread influence, Dr Ferguson's original vision has often been internalized by the broader medical community without clear historical attribution, leading to a drift in the term's original meaning. This article restores the intellectual genealogy of the \"e-patient\" as defined by Dr Ferguson as \"equipped, enabled, empowered, and engaged.\" We argue for the continued relevance of his \"quiet giant\" leadership. By formalizing Dr Ferguson's foundational white paper e-Patients: How They Can Help Us Heal Healthcare within this article, we ensure its preservation for future research and provide a stable foundation for the evolving field of participatory medicine.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e97659"},"PeriodicalIF":0.0,"publicationDate":"2026-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13450881/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148689855","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":"AI as a Therapist, Companion, and Romantic Partner: Emerging Roles, Benefits, and Risks for Mental Health in Participatory Medicine.","authors":"John Grohol","doi":"10.2196/95153","DOIUrl":"10.2196/95153","url":null,"abstract":"<p><p>The line between tool and companion was once obvious, but conversational AI is blurring it in ways few researchers anticipated. Large language model chatbots and purpose-built AI companion agents are now used by millions of people every day. They are not being used to simply retrieve information but, instead, to offer emotional support, help process personal distress, and sustain what many describe as genuine relationships. Research puts the scale of this shift in sharp relief as nearly half (48.7%) of individuals with self-reported mental health concerns report having used a large language model for mental health support or therapy-related purposes. This Viewpoint argues that these uses are best understood through 3 unique but overlapping relational frames: AI as a therapist substitute, AI as a companion or confidant substitute, and AI as a romantic partner substitute. Drawing on empirical literature across digital mental health, psychology, communication, and human-computer interaction and grounded in the values of participatory medicine, this paper examines why people turn to AI for these intimate purposes; what they appear to gain; and what clinicians, designers, developers, and policymakers should examine more carefully as the practice evolves. The picture that emerges is neither straightforwardly optimistic nor dismissive. Therapeutic chatbots can produce real symptom reduction for users; AI companionship can ease loneliness in genuine, if bounded, ways; and the emotional relief some people experience in these interactions is not an artifact of naivety. But the same systems that lower the barriers to disclosure also lower the barriers to harm. AI chatbots regularly hallucinate clinical guidance, validate dysfunctional beliefs, handle crises without accountability, and may cultivate the very isolation they seek to relieve. Responsible integration requires something more demanding than a disclaimer. Instead, it requires transparent design, thoughtful escalation pathways, ongoing evaluation, and a commitment to the human connection that participatory medicine places at the center of good care.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e95153"},"PeriodicalIF":0.0,"publicationDate":"2026-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13490930/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148680223","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":"Perspectives of Individuals With Obsessive-Compulsive Disorder on the Role of Artificial Intelligence in Therapy and Treatment: Thematic Qualitative Study.","authors":"Daniel Mokhtar, Harrison Wang, Emma C Garland, Dejan Shakya, Lucas Occhino-Moede, Xiao Liu, Adam Charles Frank","doi":"10.2196/98822","DOIUrl":"10.2196/98822","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;AI has become increasingly used in mental health care for applications such as diagnosis, monitoring, and treatment support. These include tools like clinician support systems, large language models, and conversational agents used to augment psychotherapy and clinical decision-making. While prior research suggests potential benefits of and concerns with AI, little is known within the domain of obsessive-compulsive disorder (OCD). Given the expanding role of AI in psychiatry, understanding these perspectives is essential to ensuring AI implementation aligns with patient priorities and values.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aims to explore the perspectives of individuals with OCD on the use of AI in health care, including perceived benefits, risks, and its role in relation to human clinicians.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We conducted semistructured interviews with 24 adults self-reporting OCD, recruited through online communities and advocacy networks. Eligible individuals (≥18 y with self-reported OCD) completed screening, provided informed consent, and participated in remote Health Insurance Portability and Accountability Act (HIPAA)-compliant Zoom (Zoom Communications, Inc) interviews (May-December 2024). Transcripts were deidentified, open-coded, and used to develop a codebook. Focused codes were applied using a thematic analysis framework in Dedoose (v9.2.22; Sociocultural Research Consultants, LLC). Each transcript was independently coded by 2 reviewers, with discrepancies resolved through consensus. Themes were developed through iterative interpretive analysis of code clusters.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Participants' perspectives encompassed concerns and benefits of AI in mental health care. Participants expressed concerns about the accuracy and efficacy of information provided by AI, as well as a limited ability for clinical judgment in psychiatric care. Additionally, participants emphasized the importance of human connection, particularly therapeutic alliance, empathy, and reassurance provided by clinicians, which they felt AI could not replicate. Concerns about data privacy, security, and downstream use of information were also highlighted. Despite concerns, many endorsed the use of AI as an adjunct rather than a replacement for clinicians, noting potential benefits in symptom monitoring, preliminary information gathering, and support for administrative tasks, provided that human oversight is maintained.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Individuals with OCD expressed nuanced views on AI in mental health care, balancing cautious optimism with several concerns. While AI may improve efficiency, standardization, and symptom monitoring, participants highlighted risks related to deindividualization, accuracy, and erosion of human connection. These findings underscore the importance of patient-centered, ethically guided AI integration that preserves the therapeutic alliance while leverag","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e98822"},"PeriodicalIF":0.0,"publicationDate":"2026-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426896/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148649420","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 System Mapping of a Hospice Care System With Hospice Stakeholders: Hybrid Design Workshop Study.","authors":"Andrew Tibbles, Farnaz Nickpour","doi":"10.2196/69746","DOIUrl":"10.2196/69746","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Palliative and end-of-life care (PEoLC) systems are expanding across services, settings, and stakeholders, increasing their complexity and the need for systemic understanding to support patient outcomes and service delivery. Hospice care is central to the future of PEoLC, as hospices provide holistic services and engage diverse stakeholders. Participatory system mapping offers a way to collectively understand and visualize complex dynamics with those who live and work within these systems.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aims to capture hospice system dynamics and preliminary leverage points via participatory causal loop diagram (CLD) mapping while evaluating method suitability through 3 research questions: (RQ1) What key variables and causal interrelationships do stakeholders identify in a hospice through participatory system mapping workshops? (RQ2) What preliminary leverage points emerge from the system map? and (RQ3) How effective are participatory system mapping workshops for capturing hospice dynamics?&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We developed and iteratively refined an innovative hybrid, asynchronous, multimodal design workshop series in a hospice in North West England. Stakeholders were introduced to core concepts in technology, design, systems thinking, and CLDs before engaging in participatory system mapping focused on the hospice experience quality. CLDs generated in workshops and through asynchronous participation were consolidated into a composite hospice system map. Twenty-seven participants, including patients, health care professionals, volunteers, managers, maintenance staff, and chaplaincy, contributed to the mapping process. The resulting map was analyzed using quantitative network analysis (in-degree, out-degree, betweenness, and closeness centrality) alongside qualitative interpretation of key system dynamics.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The participatory hospice system map contained 84 variables connected by 175 causal links. Network analysis highlighted patient experience (highest in-degree, 20), advanced care planning (highest out-degree, 8), fundraising (highest betweenness centrality, 0.19), and relationships with community organizations and external stakeholders (highest closeness centrality, 0.23) as central elements in the map. Qualitative analysis illuminated important dynamics, including the impact of hospital admissions and hospice stereotypes, as well as uncertainties around how advanced care planning is shaped and enacted in practice.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Participatory system mapping with hospice stakeholders was feasible in a time-pressured setting and generated a nuanced, stakeholder-led representation of hospice system dynamics. The hybrid, multimodal workshop model enhanced access and flexibility, supporting diverse engagement. Network analysis of the CLD suggested preliminary structural and conceptual leverage points and revealed gaps in shar","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e69746"},"PeriodicalIF":0.0,"publicationDate":"2026-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13399969/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148585337","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}