Journal of Participatory Medicine最新文献

{"title":"Principles and Practices of Community Engagement in AI for Population Health: Formative Qualitative Study of the AI for Diabetes Prediction and Prevention Project.","authors":"Ibukun-Oluwa Omolade Abejirinde, Ijeoma Uchenna Itanyi, Kathy Kornas, Remziye Zaim, Shion Guha, Victoria Chui, Lorraine Lipscombe, Laura C Rosella, James Shaw","doi":"10.2196/69497","DOIUrl":"10.2196/69497","url":null,"abstract":"<p><strong>Background: </strong>Preventing diabetes is a priority for governments and health systems worldwide. Artificial intelligence (AI) has the potential to inform prevention and planning. However, there is little guidance on how patients, caregivers, and communities are engaged in AI life cycle stages.</p><p><strong>Objective: </strong>This formative qualitative study aimed to identify principles for meaningful community engagement. The goal was to support the responsible use of machine learning models in diabetes prevention and management.</p><p><strong>Methods: </strong>We conducted a literature scan on how AI or digital health initiatives have engaged patients and communities. A participatory workshop was then organized with patients, caregivers, community organizations, clinicians, and policymakers. In the workshop, we identified and ranked guiding principles for community engagement in AI for population health. We also outlined key considerations for implementing these principles.</p><p><strong>Results: </strong>We identified 10 principles for patient and community engagement in AI for health care from 6 papers and developed a conceptual framework for community engagement on AI. A total of 30 workshop participants discussed and ranked the top 6 principles: trust, equity, accountability, transparency, codesign, and value alignment. Participants noted that embedding community engagement in the AI life cycle requires inclusivity and diversity. Additionally, implementers should leverage existing resources and adopt a centralized approach to AI decision-making.</p><p><strong>Conclusions: </strong>Our study offers useful insights for community-focused AI deployment that centers the values of patients and communities. The identified principles can guide meaningful engagement on the use of AI in health systems, while future research can operationalize the conceptual framework.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e69497"},"PeriodicalIF":0.0,"publicationDate":"2025-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12490773/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145214048","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":"Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: Participatory Qualitative Study.","authors":"Sasha Melanda Kullman, Louise Bird, Amy Clark, Amanda Doherty-Kirby, Diana Ermel, Nathalie Kinnard, Marion Knutson, Andrew Milroy, Lesley Singer, Anna Maria Chudyk","doi":"10.2196/79538","DOIUrl":"10.2196/79538","url":null,"abstract":"<p><strong>Background: </strong>Patient engagement in research is the meaningful and active involvement of patient and caregiver partners (ie, patients and their family or friends) in research priority-setting, conduct, and governance. With the proper support, patient and caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement.</p><p><strong>Objective: </strong>This participatory qualitative study aimed to answer the question: What are the facilitators and barriers to patient engagement experienced by patient and caregiver partners in a Canadian research context?</p><p><strong>Methods: </strong>Participants were N=13 patient and caregiver partners (median age 62 y, IQR 58-69 y; 11/13, 85% women; 13/13, 100% White) from 4 provinces who completed 60-90-minute semistructured videoconferencing interviews. The interviews were transcribed verbatim. A researcher and a patient partner reviewed the transcripts and curated a dataset of 90 participant quotations representing facilitators and barriers to patient engagement. This dataset was co-analyzed using participatory theme elicitation alongside 7 patient and caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives.</p><p><strong>Results: </strong>We generated four themes depicting factors that facilitate meaningful patient engagement alongside barriers that arise when these factors are not in place: (1) Co-defining roles and expectations; (2) demonstrating the value and impact of engagement; (3) psychological safety; and (4) community outreach, training, and education. We then discuss how barriers to enacting these 4 factors can be mitigated and provide a practical checklist of considerations for both researchers and patient and caregiver partners for engaging together throughout the research cycle.</p><p><strong>Conclusions: </strong>Research teams conducting patient and caregiver engagement activities should draw from our findings to mitigate barriers and facilitate meaningful engagement experiences.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e79538"},"PeriodicalIF":0.0,"publicationDate":"2025-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12483476/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201693","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 Participation in AI for Health Curriculum.","authors":"Kirsten Ostherr, Waverly Huang, Ana Park, Tom Punnen, Bhavik Tadigotla, Valencia Robinson, Andrea Downing","doi":"10.2196/69942","DOIUrl":"https://doi.org/10.2196/69942","url":null,"abstract":"<p><p>The adoption of artificial intelligence (AI) in health care has outpaced education of the clinical workforce on responsible use of AI in patient care. Although many policy statements advocate safe, ethical, and trustworthy AI, guidance on the use of health AI has rarely included patient perspectives. This gap leaves out a valuable source of information and guidance about what responsible AI means to patients. In this viewpoint coauthored by patients, students, and faculty, we discuss a novel approach to integrating patient perspectives in undergraduate premedical education in the United States that aims to foster an inclusive and patient-centered future of AI in health care.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e69942"},"PeriodicalIF":0.0,"publicationDate":"2025-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145139067","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":"The Effectiveness of Adaptations for Online Remote Public Deliberation Across Three Continents: Mixed Methods Study.","authors":"Carly Marten, Emily Bampton, Elin A Björling, Anne-Marie Burn, Emma Carey, Blossom Fernandes, Jasmine Kalha, Simthembile Lindani, Hedwick Masomera, Lakshmi Neelakantan, Swetha Ranganathan, Himani Shah, Refiloe Sibisi, Solveig K Sieberts, Sushmita Sumant, Christine Suver, Yanga Thungana, Jennifer Velloza, Augustina Mensa-Kwao, Pamela Y Collins, Mina Fazel, Tamsin Ford, Melvyn Freeman, Soumitra Pathare, Zukiswa Zingela, Megan Doerr","doi":"10.2196/59697","DOIUrl":"10.2196/59697","url":null,"abstract":"<p><strong>Background: </strong>Public deliberation is a qualitative research method that has successfully been used to solicit laypeople's perspectives on health ethics topics, but it remains unclear whether this traditionally in-person method can be translated to the online context. The MindKind Study conducted public deliberation sessions to gauge the concerns and aspirations of young people in India, South Africa, and the United Kingdom with regard to a prospective mental health databank. This paper details our adaptations to and evaluation of the public deliberation method in an online context, especially in the presence of a digital divide.</p><p><strong>Objective: </strong>The purpose of this study was to assess the quality of online public deliberation and share emerging learnings in a remote, disseminated qualitative research context.</p><p><strong>Methods: </strong>We convened 2-hour structured deliberation sessions over an online video conferencing platform (Zoom). We provided participants with multimedia informational materials describing different ways to manage mental health data. We analyzed the quality of online public deliberation in variable resource settings on the basis of (1) equal participation, (2) respect for the opinions of others, (3) adoption of a societal perspective, and (4) reasoned justification of ideas. To assess the depth of comprehension of the informational materials, we used qualitative data that pertained directly to the materials provided.</p><p><strong>Results: </strong>The sessions were broadly of high quality. Some sessions were affected by an unstable internet connection and subsequent multimodal participation, complicating our ability to perform a quality assessment. English-speaking participants displayed a deep understanding of complex informational materials. We found that participants were particularly sensitive to linguistic and semiotic choices in the informational materials. A more fundamental barrier to understanding was encountered by participants who used materials translated from English.</p><p><strong>Conclusions: </strong>Although online public deliberation may have quality outcomes similar to those of in-person public deliberation, researchers who use remote methods should plan for technological and linguistic barriers when working with a multinational population. Our recommendations to researchers include budgetary planning, logistical considerations, and ensuring participants' psychological safety.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e59697"},"PeriodicalIF":0.0,"publicationDate":"2025-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12431157/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145055862","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":"Correction: Consumer Data Is Key to Artificial Intelligence Value: Welcome to the Health Care Future.","authors":"James P Cummings","doi":"10.2196/82984","DOIUrl":"10.2196/82984","url":null,"abstract":"","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e82984"},"PeriodicalIF":0.0,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12422984/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145034217","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":"Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: A Participatory Qualitative Study.","authors":"Sasha Melanda Kullman, Louise Bird, Amy Clark, Amanda Doherty-Kirby, Diana Ermel, Nathalie Kinnard, Marion Knutson, Andrew Milroy, Lesley Singer, Anna Maria Chudyk","doi":"10.2196/79538","DOIUrl":"https://doi.org/10.2196/79538","url":null,"abstract":"<p><strong>Background: </strong>Patient engagement in research is the meaningful and active involvement of patient/caregiver partners (i.e., patients and their family/friends) in research priority-setting, conduct, and governance. With the proper support, patient/caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement.</p><p><strong>Objective: </strong>This participatory qualitative study answered the question: What are the facilitators and barriers to patient engagement experienced by patient/caregiver partners in a Canadian research context?</p><p><strong>Methods: </strong>Participants were N = 13 patient/caregiver partners (Mage = 62 years, 85% women; 100% White) from four provinces who completed 60-90-minute semi-structured online interviews. The interviews were transcribed verbatim. One researcher and one patient/caregiver partner reviewed the transcripts and curated a dataset of 90 participant quotations representing facilitators and barriers to patient engagement. This dataset was co-analyzed using Participatory Theme Elicitation alongside seven patient/caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives.</p><p><strong>Results: </strong>Four themes depicted factors that facilitate meaningful patient engagement alongside barriers that arise when these factors are not in place: (1) Co-defining roles and expectations, (2) Demonstrating the value and impact of engagement, (3) Psychological safety, and (4) Educating the public, patient/caregiver partners, and researchers. We then discuss how barriers to enacting these four factors can be mitigated and provide a practical checklist of considerations for both researchers and patient/caregiver partners for engaging together throughout the research cycle.</p><p><strong>Conclusions: </strong>Researchers and patient/caregiver partners should draw from our findings to mitigate engagement barriers and facilitate meaningful engagement experiences.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145001501","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":"Creating a Parent-Informed Pediatric Emergency Department Wait Time App: Human-Centered Design Approach to Creating an AI Health Care Tool.","authors":"Sasha Litwin, Maya Mohabir, Ipek Sevim Kocak, Devin Singh","doi":"10.2196/66644","DOIUrl":"10.2196/66644","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Waiting has become an unfortunate reality for parents seeking care for their child in the emergency department (ED). Long wait times are known to increase morbidity and mortality. Providing patients with information about their wait time increases their satisfaction and sense of control. There are very few patient-facing artificial intelligence (AI) tools currently in use in EDs, particularly tools that are co-designed with patients and caregivers.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;The aim of this study is to use insights from parents and health care providers to inform the design of an AI tool that provides personalized wait time and health information to parents during their child's ED visit.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The study followed a human-centered design methodology. The study was conducted in a large urban tertiary care academic children's hospital. Data were collected through demographic surveys, semistructured interviews, card sorting, structured observations, and prototype testing with parents and triage nurses. Quantitative data from demographic surveys and card sorting were analyzed using descriptive statistics, including means, medians, and interquartile ranges. Qualitative data from semistructured interviews and observations were analyzed using a thematic analysis. The thematic analysis informed the design criteria of the tool. The tool was implemented in the ED and improved through iterative rounds of usability testing.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Between May 30, 2023, and August 30, 2023, a total of 64 semistructured interviews were conducted with parents in the waiting room. Five interviews were conducted with triage nurses. Parents primarily were mothers (38/64, 59%), were college/university graduates (37/64, 58%), and had a preferred language of English (51/64, 80%). All parents had a smartphone and 97% (62/64) used apps on their smartphone. Children were a median of 7 years old (IQR 4-12 years old) and had a median of 4 lifetime visits to the ED (IQR 1 to &gt;5). The thematic analysis revealed 5 key themes that informed the development of the tool: (1) anxiety due to uncertainty, (2) feeling forgotten, (3) low health literacy, (4) not understanding the ED process, and (5) no indication of progress.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This study used a human-centered design approach to explore parents' experience waiting in the pediatric ED to develop an AI tool to improve the waiting experience. By prioritizing parents' experiences and insights, we created a solution that addresses the challenges of communicating wait times and contributes to a more compassionate and efficient health care environment. The implementation of this tool has given patients and families the control and certainty they were lacking by providing information about their wait time. Successful implementation of technology in health care requires a design approach so that solutions are clinically relevant, user-cent","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e66644"},"PeriodicalIF":0.0,"publicationDate":"2025-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12396731/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972479","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":"Developing a Health Education Program for the Prevention and Control of Infectious Diseases Culturally Adapted to Ethnic and Rural Communities: Co-Design Study Using Participatory Audiovisual Methods.","authors":"Martha Milena Bautista-Gomez, Laura Sofia Zuluaga Gutierrez","doi":"10.2196/65116","DOIUrl":"10.2196/65116","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Infectious diseases disproportionately affect rural and ethnic communities in Colombia, where structural inequalities such as limited access to health care, poor sanitation, and scarce health education worsen their effects. Education is essential for preventing and controlling infectious diseases, fostering awareness of healthy behaviors, and empowering communities with the knowledge and skills to manage their health. Participatory and co-design methods strengthen educational programs by ensuring cultural relevance, enhancing knowledge retention, and promoting sustainable community interventions.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aims to describe the co-design process and evaluate the capacity building of an education program for the prevention and control of infectious diseases using participatory audiovisual methods culturally adapted to ethnic communities and rural contexts in Colombia.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A qualitative case study approach was used. 15 community leaders contributed to the program's design, implementation, and evaluation. Nominal groups and a participatory social diagnosis identified key topics, while theoretical-practical sessions with visual methods guided the cocreation of workshops and audiovisual materials. Evaluation combined qualitative analysis of participants' perceptions and quantitative assessment of knowledge acquisition. Qualitative data were coded through content analysis, while multiple-choice questionnaires (initial and final) categorized knowledge acquisition into 3 levels (low, medium, and high), with percentage distributions used for comparative analysis.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The co-design process resulted in 12 theoretical and practical workshops in infectious diseases and 3 audiovisual products: an animation about malaria, a comic book about cutaneous leishmaniasis, and a puppet show about tuberculosis. The quantitative evaluation applied to the 15 participants revealed substantial improvements, with the proportion that achieved excellent scores in pedagogy increasing from 40% (6/15) to 93% (14/15), in leadership from 13% (2/15) to 27% (4/15). In terms of health knowledge, excellent scores increased from 40% for leishmaniasis, 60% for malaria, and 13% for tuberculosis, reaching 80% for all three diseases. The qualitative evaluation showed positive results in terms of the participants' perceptions of both the methodology and the co-design process outcomes.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;The co-design process was driven by 3 key factors: (1) active community participation at every stage; (2) knowledge exchange between multidisciplinary technical expertise and practical local knowledge; and (3) the use of innovative, culturally adapted pedagogical tools tailored to the rural context and population. This co-design process proved to be an effective method for meaningful capacity building among populations experiencing vulnerability in complex","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e65116"},"PeriodicalIF":0.0,"publicationDate":"2025-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12432463/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972482","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":"Assessment of Mental and Chronic Health Conditions as Determinants of Health Care Needs and Digital Innovations for Women With Sexual Dysfunction: Cross-Sectional Population-Based Survey Study in Germany.","authors":"Selina Marie Kronthaler, Tatjana Tissen-Diabaté, Maria Margarete Karsten, Jens-Uwe Blohmer, Klaus Michael Beier, Laura Hatzler","doi":"10.2196/71301","DOIUrl":"10.2196/71301","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;A chronic health condition (CHC) is a recognized risk factor for experiencing problems in sexual function (PSF). According to the International Classification of Diseases, 11th Revision (ICD-11), the development of severe symptoms of sexual distress is the defining criterion for clinically relevant sexual dysfunction. Data on the contribution of specific CHCs to clinically relevant sexual dysfunction symptoms and related health care needs are limited, hindering targeted interventions.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study examines the prevalence of PSF, sexual dysfunction, and sexual distress; assesses associations with CHC status; evaluates sexual dysfunction diagnoses; and explores health care preferences.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Data collection in this cross-sectional population-based survey study was based on a questionnaire developed with patient and public involvement and administered by YouGov to a representative sample of adults in Germany. Analyses included 1970 women with and without CHCs and different CHC subgroups (mental health-related, gynecological, cardiovascular and metabolic, infectious and inflammatory, cancer, pain-related, and neurological). The outcomes measured were PSF, clinically relevant sexual dysfunction symptoms, sexual distress (Female Sexual Distress Scale-Desire/Arousal/Orgasm [FSDS-DAO]), and self-reported sexual dysfunction diagnoses. Multivariable regression and network analysis explored associations among CHC subgroups, PSF, sexual dysfunction, and FSDS-DAO scores.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Among 1970 cisgender women (mean age 49.6, SD 16.0 years), 1186 (60.2%) reported CHCs. The 6-month PSF prevalence was 75.2% (820/1090) in women with CHCs and 62.5% (399/638) in women without CHCs. Clinically relevant sexual dysfunction symptoms were less prevalent (CHC: 202/1046, 19.3% vs no CHC: 68/601, 11.3%). Multivariable regression models showed an association between sexual dysfunction and CHCs (odds ratio [OR] 2.56, 95% CI 1.90-3.49), which was the strongest for women with mental health-related CHCs (OR 2.31, 95% CI 1.70-3.13) and cancer CHCs (OR 2.00, 95% CI 1.45-2.78). Being in a relationship was a protective factor for clinically relevant distress among women with CHCs. Network analysis showed positive associations of PSF with gynecological and mental health-related CHCs and of sexual dysfunction with mental health-related, gynecological, and cancer CHCs. Women with sexual dysfunction symptoms reported low rates of sexual dysfunction diagnosis (CHC: 39/200, 19.4% vs no CHC: 6/55, 10.7%) and treatment (CHC: 16/146, 11.0% vs no CHC: 3/40, 7.0%). Gynecologists were the preferred health care providers for sexual dysfunction. The most commonly reported unmet need was a lack of information. Digital solutions, such as apps and websites with exercises, were desired as health care innovations.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;The burden of CHCs on women's sexual health","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e71301"},"PeriodicalIF":0.0,"publicationDate":"2025-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12386550/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972458","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":"SPAN@DEM (SingHealth Patient Advocacy Network @ Department of Emergency Medicine)-A Pioneer in Emergency Department-Specific Patient Advocacy: Development Study.","authors":"Mingwei Ng, Zhenghong Liu, Mohan Pillay, Sook Mei Chang, Boon Kiat Kenneth Tan","doi":"10.2196/72552","DOIUrl":"10.2196/72552","url":null,"abstract":"<p><strong>Background: </strong>Launched in January 2022, the SingHealth Patient Advocacy Network at the Department of Emergency Medicine (SPAN@DEM) represents the first emergency department-specific advocacy group in Singapore. This initiative marks a significant advancement in local patient advocacy efforts because it employs a shared collaborative model to address the needs and concerns of patients within the unique context of the emergency department environment. SPAN@DEM emerged in recognition of the limitations of existing cluster-level advocacy groups, which are inadequate to address specific challenges inherent to the fast-paced, high-pressure nature of the emergency department.</p><p><strong>Objective: </strong>In this article, we describe the establishment of SPAN@DEM, discuss the challenges and considerations encountered, and reflect on lessons gleaned through this journey.</p><p><strong>Methods: </strong>A start-up committee, comprising two emergency physicians and four patient advocates, was convened to delineate the processes required to form a new patient advocacy group. Key features of SPAN@DEM include co-leadership by an emergency physician and a patient advocate, and diverse membership composition with equal representation from health care professionals and patient advocates. SPAN@DEM convenes quarterly with informal luncheons during meetings to foster open communication between advocates and health care staff. Membership is voluntary and motivated solely by altruism, and all members are required to participate in mandatory advocacy training to empower them to provide more actionable insights.</p><p><strong>Results: </strong>Since its inception, SPAN@DEM has implemented several initiatives such as PIKACHU (Project to Improve next-of-Kin Advice, Communications and Helpful Updates)-a suite of quality improvement measures that resulted in improved patient and next-of-kin satisfaction rates and reduced formal communication-related complaints-and Digital FAQ-an online web-based resource designed to clarify emergency department processes for patients. SPAN@DEM advocates have also contributed to the planning, design, and transition to the new Emergency Medicine Building. More importantly, SPAN@DEM has fostered a cultural shift towards patient-centered care, with the department now routinely engaging patient advocates in decisions affecting patient and next-of-kin experience.</p><p><strong>Conclusions: </strong>SPAN@DEM exemplifies the value of specialized emergency department-specific advocacy groups in advancing patient-centered emergency care. This model may serve as an exemplar for other health care institutions seeking to enhance patient advocacy efforts.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e72552"},"PeriodicalIF":0.0,"publicationDate":"2025-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12411646/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972509","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}