Journal of Participatory Medicine最新文献

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Correction: Consumer Data Is Key to Artificial Intelligence Value: Welcome to the Health Care Future. 更正:消费者数据是人工智能价值的关键:欢迎来到医疗保健的未来。
Journal of Participatory Medicine Pub Date : 2025-09-10 DOI: 10.2196/82984
James P Cummings
{"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}
引用次数: 0
Exploring Patient and Caregiver Perceptions of the Facilitators and Barriers to Patient Engagement in Research: A Participatory Qualitative Study. 探索患者和护理人员对患者参与研究的促进因素和障碍的看法:一项参与性质的研究。
Journal of Participatory Medicine Pub Date : 2025-09-02 DOI: 10.2196/79538
Sasha Melanda Kullman, Louise Bird, Amy Clark, Amanda Doherty-Kirby, Diana Ermel, Nathalie Kinnard, Marion Knutson, Andrew Milroy, Lesley Singer, Anna Maria Chudyk
{"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}
引用次数: 0
Creating a Parent-Informed Pediatric Emergency Department Wait Time App: Human-Centered Design Approach to Creating an AI Health Care Tool. 创建家长知情的儿科急诊科等待时间应用程序:以人为本的设计方法创建人工智能医疗保健工具。
Journal of Participatory Medicine Pub Date : 2025-08-29 DOI: 10.2196/66644
Sasha Litwin, Maya Mohabir, Ipek Sevim Kocak, Devin Singh
{"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}
引用次数: 0
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. 为预防和控制传染病制定适合少数民族和农村社区文化的健康教育方案:采用参与式视听方法的共同设计研究。
Journal of Participatory Medicine Pub Date : 2025-08-29 DOI: 10.2196/65116
Martha Milena Bautista-Gomez, Laura Sofia Zuluaga Gutierrez
{"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}
引用次数: 0
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. 评估精神和慢性健康状况作为性功能障碍妇女保健需求和数字创新的决定因素:德国基于人口的横断面调查研究
Journal of Participatory Medicine Pub Date : 2025-08-27 DOI: 10.2196/71301
Selina Marie Kronthaler, Tatjana Tissen-Diabaté, Maria Margarete Karsten, Jens-Uwe Blohmer, Klaus Michael Beier, Laura Hatzler
{"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":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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}
引用次数: 0
SPAN@DEM (SingHealth Patient Advocacy Network @ Department of Emergency Medicine)-A Pioneer in Emergency Department-Specific Patient Advocacy: Development Study. SPAN@DEM (SingHealth患者倡导网络@急诊科)-急诊科患者倡导的先驱:发展研究。
Journal of Participatory Medicine Pub Date : 2025-08-27 DOI: 10.2196/72552
Mingwei Ng, Zhenghong Liu, Mohan Pillay, Sook Mei Chang, Boon Kiat Kenneth Tan
{"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}
引用次数: 0
Engaging Young People With Mental Health Needs and Exploring Outputs From a Resource Development Project: Qualitative Interview Study. 参与青少年的心理健康需求和探索资源开发项目的产出:定性访谈研究。
Journal of Participatory Medicine Pub Date : 2025-08-25 DOI: 10.2196/74258
Zoë Haime, Charlotte Carney, Myles-Jay Linton, Helen Bould, Lucy Biddle
{"title":"Engaging Young People With Mental Health Needs and Exploring Outputs From a Resource Development Project: Qualitative Interview Study.","authors":"Zoë Haime, Charlotte Carney, Myles-Jay Linton, Helen Bould, Lucy Biddle","doi":"10.2196/74258","DOIUrl":"10.2196/74258","url":null,"abstract":"<p><strong>Background: </strong>Recommendations from professional bodies, including the Royal College of Psychiatrists, advise mental health practitioners to discuss problematic online use with children and young people. However, barriers such as knowledge gaps and low confidence in initiating discussions often prevent these conversations from happening.</p><p><strong>Objective: </strong>The Digital Dialogues project used a knowledge exchange approach, cocreating resources with young people, to support professionals in overcoming these challenges. This paper details the project design and reflects on the perspectives of the young people involved.</p><p><strong>Methods: </strong>The project was guided by the \"children and young people have ownership\" model of cocreation. A total of 11 participants were purposively sampled to take part in the Digital Dialogues Young Persons Group (DDYPG) and were actively involved in the study workshops, creative tasks, and resource design and development. In total, 6 (55%) DDYPG members took part in interviews, and 2 (18%) also completed an anonymous survey evaluating their time in the DDYPG. Thematic analysis was used to explore data from interviews and qualitative survey responses together.</p><p><strong>Results: </strong>The DDYPG successfully created several resources to support practitioners in addressing problematic online use with young people. Reflections from DDYPG members showed that creative engagement, meaningful involvement, and peer interactions were key motivators for participation and led to benefits, including feelings of empowerment and personal development. Anxiety, time demands, and potential exposure to triggering content could act as barriers. However, structured tasks, positive rapport with researchers, and flexible participation helped to mitigate these challenges.</p><p><strong>Conclusions: </strong>The findings highlight ethical considerations and potential strategies for involving young people in resource development research projects in the future.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e74258"},"PeriodicalIF":0.0,"publicationDate":"2025-08-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12417902/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972529","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}
引用次数: 0
Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study. 脑肿瘤基因组研究的参与方法:多方法比较研究。
Journal of Participatory Medicine Pub Date : 2025-08-21 DOI: 10.2196/68852
Matthew DeCamp, Juliana G Barnard, Carly Ritger, Laura J Helmkamp, Anowara Begum, Sandra Garcia-Hernandez, Rudy Fischmann, Nestelynn Gay, Ricardo Gonzalez-Fisher, Kevin C Johnson, Lindsay A Lennox, Guy R Lipof, Jasmyn Ostmeyer, Ifeoma Perkins, Laura Pyle, Liz Salmi, Talia Thompson, Elizabeth B Claus, Roel Verhaak, Bethany M Kwan
{"title":"Engagement Methods in Brain Tumor Genomic Research: Multimethod Comparative Study.","authors":"Matthew DeCamp, Juliana G Barnard, Carly Ritger, Laura J Helmkamp, Anowara Begum, Sandra Garcia-Hernandez, Rudy Fischmann, Nestelynn Gay, Ricardo Gonzalez-Fisher, Kevin C Johnson, Lindsay A Lennox, Guy R Lipof, Jasmyn Ostmeyer, Ifeoma Perkins, Laura Pyle, Liz Salmi, Talia Thompson, Elizabeth B Claus, Roel Verhaak, Bethany M Kwan","doi":"10.2196/68852","DOIUrl":"10.2196/68852","url":null,"abstract":"<p><strong>Background: </strong>Engaging patients, care partners, and others in research planning and conduct is increasingly valued. However, identifying the most effective ways to do so remains a challenge.</p><p><strong>Objective: </strong>This study aimed to evaluate participation and participant experience using 3 engagement methods with the Low-Grade Glioma (LGG) Registry's Optimizing Engagement in Discovery of Molecular Evolution of Low-Grade Glioma (OPTIMUM) project, part of the National Cancer Institute's Participant Engagement and Cancer Genome Sequencing Network.</p><p><strong>Methods: </strong>We evaluated LGG Registry research advisory council (RAC) meetings, Twitter (now known as X), and Facebook discussions across 4 engagement activities with each group. Researchers recorded discussions and performed qualitative content analysis to evaluate differences in the nature of interactions and recommendations for promoting trust and participation in LGG Registry research. Participants completed experience surveys after engagements 1 and 4 (Public and Patient Engagement Evaluation Tool, Research Engagement Survey Tool, Trust in Medical Researchers Scale, and Patient Engagement in Research Scale).</p><p><strong>Results: </strong>RAC engagements involved 25 unique participants representing diverse backgrounds; tweet chats and Facebook discussions had 197 and 133 participants, respectively. Qualitative findings highlighted differences in the nature of interactions (eg, communication styles and types of information shared) across groups, but there was general agreement around recommendations for promoting participation in genomic research. Postengagement surveys (n=52 in ipostengagement activity 1; n=40 in postengagement activity 4) showed patterns suggesting a more positive experience overall for the RAC.</p><p><strong>Conclusions: </strong>Advisory councils and social media engagement methods have advantages and disadvantages. Advisory councils provide consistent interactions with the same individuals and clear procedures. Despite theoretically broader reach, social media engagement may yield less diverse perspectives. The LGG Registry aims to use RAC and social media engagement methods to promote diverse perspectives and maintain consistent interactions.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e68852"},"PeriodicalIF":0.0,"publicationDate":"2025-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12411796/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972499","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}
引用次数: 0
Perception of AI Use in Youth Mental Health Services: Qualitative Study. 青少年心理健康服务中人工智能使用的认知:质性研究。
Journal of Participatory Medicine Pub Date : 2025-08-19 DOI: 10.2196/69449
Xiaoxu Ding, Skye Barbic
{"title":"Perception of AI Use in Youth Mental Health Services: Qualitative Study.","authors":"Xiaoxu Ding, Skye Barbic","doi":"10.2196/69449","DOIUrl":"10.2196/69449","url":null,"abstract":"<p><strong>Background: </strong>Artificial intelligence (AI) technology has made significant advancements in health care. A key application of using artificial intelligence for health (AIH) is the use of AI-powered chatbots; however, empirical evidence on their effectiveness and feasibility remains limited.</p><p><strong>Objective: </strong>This study explored interest group perceptions of integrating AIH in youth mental health services, focusing on its potential benefits, challenges, usefulness, and regulatory implications.</p><p><strong>Methods: </strong>This qualitative study used semistructured in-depth interviews with 23 mobile health stakeholders, including youth users, service providers, and nonclinical staff from an integrated youths' service network. We used an inductive approach and thematic analysis to identify and summarize common themes and subthemes.</p><p><strong>Results: </strong>Participants identified AIH's potential to support education, navigation, and administrative tasks in health care, as well as to create safe spaces and mitigate health resource burdens. However, they expressed concerns about the lack of human elements, such as empathy and clinical judgment. Key challenges included privacy issues, unknown risks from rapid technological advancements, and insufficient crisis management for sensitive mental health cases. Participants viewed AIH's ability to mimic human behavior as a critical quality standard and emphasized the need for a robust evaluation framework combining objective metrics with subjective insights.</p><p><strong>Conclusions: </strong>While AIH has the potential to improve health care access and experience, it cannot address all mental health challenges and may exacerbate existing issues. While AIH could complement less-complex services, it could not replace the therapeutic value of human interaction at this time. Co-design with end users is critical for successful AI integration. Robust evaluation frameworks and an iterative approach to build a learning health system are essential to refine AIH and ensure it aligns with real-world evolving needs.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e69449"},"PeriodicalIF":0.0,"publicationDate":"2025-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12364429/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144883928","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}
引用次数: 0
Generative AI as Third Agent: Large Language Models and the Transformation of the Clinician-Patient Relationship. 生成人工智能作为第三代理:大型语言模型和医患关系的转变。
Journal of Participatory Medicine Pub Date : 2025-08-11 DOI: 10.2196/68146
Hugo de O Campos, Daniel Wolfe, Hongzhou Luan, Ida Sim
{"title":"Generative AI as Third Agent: Large Language Models and the Transformation of the Clinician-Patient Relationship.","authors":"Hugo de O Campos, Daniel Wolfe, Hongzhou Luan, Ida Sim","doi":"10.2196/68146","DOIUrl":"10.2196/68146","url":null,"abstract":"<p><strong>Unlabelled: </strong>The use of artificial intelligence (AI) in health care has significant implications for patient-clinician interactions. Practical and ethical challenges have emerged with the adoption of large language models (LLMs) that respond to prompts from clinicians, patients, and caregivers. With an emphasis on patient experience, this paper examines the potential of LLMs to act as facilitators, interrupters, or both in patient-clinician relationships. Drawing on our experiences as patient advocates, computer scientists, and physician informaticists working to improve data exchange and patient experience, we examine how LLMs might enhance patient engagement, support triage, and inform clinical decision-making. While affirming LLMs as a tool enabling the rise of the \"AI patient,\" we also explore concerns surrounding data privacy, algorithmic bias, moral injury, and the erosion of human connection. To help navigate these tensions, we outline a conceptual framework that anticipates the role and impact of LLMs in patient-clinician dynamics and propose key areas for future inquiry. Realizing the potential of LLMs requires careful consideration of which aspects of the patient-clinician relationship must remain distinctly human and why, even when LLMs offer plausible substitutes. This inquiry should draw on ethics and philosophy, aligned with AI imperatives such as patient-centered design and transparency, and shaped through collaboration between technologists, health care providers, and patient communities.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e68146"},"PeriodicalIF":0.0,"publicationDate":"2025-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12361538/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144875608","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}
引用次数: 0
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