Journal of Participatory Medicine最新文献

{"title":"Understanding the Experiences of Patients With Pancreatic Cancer: Quantitative Analysis of the Pancreatic Cancer Action Network Patient Registry.","authors":"Allison Rosenzweig, Sydney Rathjens, Kawther Abdilleh, Dennis Ladnier, Fatima Zelada-Arenas, Sudheer Doss, Lynn M Matrisian","doi":"10.2196/65046","DOIUrl":"https://doi.org/10.2196/65046","url":null,"abstract":"<p><strong>Background: </strong>The Pancreatic Cancer Action Network (PanCAN) established its Patient Registry to gather real-world data from patients with pancreatic cancer and their caregivers, related to their diagnosis, symptoms and symptom management, treatments, and more. Results from version 2 of the PanCAN Registry are presented here.</p><p><strong>Objective: </strong>We sought to gather and evaluate patient-reported outcomes data inputted into the PanCAN Patient Registry from December 2020 to January 2024. Statistical analyses were used to identify findings from a relatively small sample size (271 participants, as defined by people who filled out the Basics survey of the PanCAN Registry).</p><p><strong>Methods: </strong>Participation in the PanCAN Patient Registry was voluntary, and participants filled out an electronic consent form before joining the registry. Participants were identified through the PanCAN Patient Services Help Line or navigated to the registry directly via the PanCAN website. Data analysis took place via bivariate analysis using the chi-square test for categorical variables. Statistical significance was defined as a P value of <.05, with P values between .05 and .1 considered marginally significant, and P values >.1 considered insignificant.</p><p><strong>Results: </strong>Pain was reported by 186 out of the 207 (89.9%) PanCAN Patient Registry participants who filled out the pain-related questions in the General Assessment survey. We observed a marginally significant (P=.06) difference between the reporting of pain by patients aged younger than 65 years (86/92, 93.5%) and those aged 65 years or older (66/78, 84.6%). Depression was also a common condition experienced by patients with pancreatic cancer, with 64/103 (62.1%) indicating that they were experiencing or had experienced depression during the course of their illness. A trend suggested that depression was more frequently reported among the subset of patients who also reported pain (53/80, 66.3%) compared with those who did not report pain (5/13, 38.5%; P=.07).</p><p><strong>Conclusions: </strong>The use of patient-reported outcomes and real-world data for patients with pancreatic cancer has the potential to have direct impact on clinical practice. Through a relatively small sampling of patients, trends were identified that suggest a higher reporting of pain amongst patients in a younger age group as well as concurrence of pain and depression. These findings underscore the importance of a multidisciplinary team of health care professionals addressing patients' needs beyond the treatment of their cancer.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e65046"},"PeriodicalIF":0.0,"publicationDate":"2025-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144152150","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":"From E-Patients to AI Patients: The Tidal Wave Empowering Patients, Redefining Clinical Relationships, and Transforming Care.","authors":"Susan S Woods, Sarah M Greene, Laura Adams, Grace Cordovano, Matthew F Hudson","doi":"10.2196/75794","DOIUrl":"10.2196/75794","url":null,"abstract":"<p><strong>Unlabelled: </strong>Artificial intelligence (AI) and large language models offer significant potential to enhance many aspects of daily life. Patients and caregivers are increasingly using AI for their own knowledge and to address personal challenges. The growth of AI has been extraordinary; however, the field is only beginning to explore its intersection with participatory medicine. For many years, the Journal of Participatory Medicine has published insights on tech-enabled patient empowerment and strategies to enhance patient-clinician relationships. This theme issue, Patient and Consumer Use of AI for Health, will explore the use of AI for health from the perspective of patients and the public.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e75794"},"PeriodicalIF":0.0,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12101788/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081068","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences and Needs of Core Participants in Surgical Ward Rounds: Qualitative Exploratory Study.","authors":"Helle Poulsen, Jane Clemensen, Jette Ammentorp, Poul-Erik Kofoed, Maiken Wolderslund","doi":"10.2196/69578","DOIUrl":"10.2196/69578","url":null,"abstract":"<p><strong>Background: </strong>Surgical ward rounds (SWRs) are typically led by doctors, with limited involvement from key participants, including patients, family members, and bedside nurses. Despite the potential benefits of a more collaborative and person-centered approach, efforts to engage these stakeholders remain rare.</p><p><strong>Objective: </strong>This qualitative exploratory study aims to examine the experiences and needs of doctors, nurses, patients, and their relatives during SWRs as part of a participatory design process.</p><p><strong>Methods: </strong>Data were collected through ethnographic field studies, focus groups with the health care providers, patients, and relatives, and dyadic interviews conducted as part of home visits to patients and their partners after discharge. Field notes and interview data were analyzed using systematic text condensation.</p><p><strong>Results: </strong>Lack of organization, traditional roles, and cultural norms compromised the quality, efficiency, and user experience of SWRs in multiple ways. SWRs were routine-driven, treatment-focused, and received lower priority than surgical tasks. Unpredictability resulted in unprepared participants and limited access for nurses, patients, and relatives to partake.</p><p><strong>Conclusions: </strong>The study identified a gap between the organizational and cultural frameworks governing the SWRs and the experiences and needs of key participants. Digital technologies were perceived as a potential solution to address some of these challenges.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e69578"},"PeriodicalIF":0.0,"publicationDate":"2025-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12097653/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081065","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":"Proof of Concept for a Digital Framework to Support a Shared Agenda at Surgical Ward Rounds: Participatory Design Study.","authors":"Helle Poulsen, Jane Clemensen, Jette Ammentorp, Poul-Erik Kofoed, Maiken Wolderslund","doi":"10.2196/69679","DOIUrl":"https://doi.org/10.2196/69679","url":null,"abstract":"<p><strong>Background: </strong>Surgical ward rounds (SWRs) are often unstructured and deprioritized compared to traditional surgical tasks, leading to limited interdisciplinary collaboration, unprepared patients, and low family attendance.</p><p><strong>Objective: </strong>This study aimed to co-design and develop a digital framework to facilitate a shared agenda for SWRs, ensuring all core participants can attend and participate effectively.</p><p><strong>Methods: </strong>Participatory Design (PD) methodologies were employed, utilizing user-engaging activities within an iterative process. A multidisciplinary team, including patients, relatives, healthcare providers, technology designers, and researchers, collaborated in workshops and testing to translate user needs into prototypes of technologies consisting of the digital framework.</p><p><strong>Results: </strong>A logistics system was developed for nurses to pre-book the SWRs in designated time slots, enabling them to prepare relevant data and partake in the dialogue with patients. Additionally, a mobile health application (mHealth app) displayed the schedule for patients and relatives, helping them to participate and prepare questions in advance. Multiple iterations ensured that the digital framework met user needs and was feasible for clinical practice.</p><p><strong>Conclusions: </strong>Our findings underscore the importance of collaboration between users and technology designers in developing digital health technologies. Engaging the users helped identify technical and organizational constraints that needed to be addressed to integrate the digital framework into clinical settings.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144037003","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":"A Brief Video-Based Intervention to Improve Digital Health Literacy for Individuals With Bipolar Disorder: Intervention Development and Results of a Single-Arm Quantitative Pilot Study.","authors":"Emma Morton, Sahil S Kanani, Natalie Dee, Rosemary Xinhe Hu, Erin E Michalak","doi":"10.2196/59806","DOIUrl":"10.2196/59806","url":null,"abstract":"<p><strong>Background: </strong>Smartphone apps can improve access to bipolar disorder (BD) care by delivering elements of effective psychological interventions, thereby promoting quality of life and reducing relapse risk and mood instability in BD. While many people with BD are interested in using publicly available mental health smartphone apps, without guidance, they risk selecting apps that are unsafe or ineffective.</p><p><strong>Objective: </strong>This study aimed to co-design a brief educational video on identifying appropriate mental health apps and to evaluate the acceptability and impact of this video among individuals with BD.</p><p><strong>Methods: </strong>Individuals with lived experience of BD, including 2 peer researchers and members of 2 advisory groups (n=4 and n=7), were consulted to develop a video with information on selecting safe, effective, and engaging mental health apps for BD. Video acceptability and impact on self-reported digital health literacy (including both general eHealth literacy and more specific mobile health literacy) were evaluated via a web-based survey, including both a validated measure and complementary items developed by the research team.</p><p><strong>Results: </strong>In total, 42 individuals with BD completed the evaluation survey (n=29, 69% women, mean age 38.6, SD 12.0 years). Digital health literacy, measured using the self-report eHealth Literacy Scale, significantly improved after viewing the video (pre: mean 32.40, SD 4.87 and post: mean 33.57, SD 4.67; t₄₁=-3.236; P=.002; d=-0.50). Feedback supported the acceptability of the video content and format. Self-report items developed by the study team to assess mobile health literacy showed that individuals felt better able to determine which apps would protect their data (P=.004) and to ask their health care provider for support in choosing apps (P<.001) after watching the video.</p><p><strong>Conclusions: </strong>This study found preliminary evidence that an educational video can help people with BD improve their ability to identify, apply, and evaluate the quality of digital health resources. The video and a supplementary web-based educational module are freely available for implementation in health care settings and have the potential to be a cost-effective and accessible resource for clinicians to support patients with BD to navigate the public app marketplace in support of their self-management goals.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e59806"},"PeriodicalIF":0.0,"publicationDate":"2025-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12102627/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144037002","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":"Impact of Platform Design and Usability on Adherence and Retention: Randomized Web- and Mobile-Based Longitudinal Study.","authors":"Xinrui Jiang, Michelle Timmons, Elias Boroda, Marie Onakomaiya","doi":"10.2196/50225","DOIUrl":"10.2196/50225","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Low retention and adherence increase clinical trial costs and timelines. Burdens associated with participating in a clinical trial contribute to early study termination. Electronic patient-reported outcome (ePRO) tools reduce participant burden by allowing remote participation, and facilitate communication between researchers and participants. The Datacubed Health (DCH) mobile app is unique among ePRO platforms in its application of behavioral science principles (reward, motivation, identity, etc) in clinical trials to promote engagement, adherence, and retention.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;We evaluated the impact of platform design and usability on adherence and retention with a longitudinal study involving repeated patient-facing study instruments. We expected participants assigned to complete instruments in the DCH mobile app to stay in this study longer (increased retention) and complete more surveys while in this study (increased adherence) due to the enhanced motivational elements unique to the participant experience in the DCH app group, and this group's overall lower burden of participation.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;A total of 284 adult participants completed 24 weekly surveys via 1 of 4 modalities (DCH app vs DCH website vs third-party website vs paper) in a web-based and mobile longitudinal study. Participants were recruited from open access websites (eg, Craigslist or Facebook [Meta]), and a closed web-based user group. All participation occurred remotely. Study staff deliberately limited communications with participants to directly assess the main effects of survey administration modality; enrollment and study administration were largely automated. Participants assigned to the DCH app group experienced behavioral science-driven motivational elements related to reward and identity formation throughout their study journey. There was no homolog to this feature in any other tested platform. Participants assigned to the DCH app group accessed study measures using passcodes or smartphone biometrics (face or touch ID). Participants in the DCH website group logged into a website using a username and password. Participants in the third-party website group accessed web-based surveys via personalized emailed links with no need for password authentication. Paper arm participants received paper surveys in the mail.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Mode of survey administration (DCH app vs DCH website vs third-party website vs paper) predicted study retention (F9,255=4.22, P&lt;.001) and adherence (F9,162=5.5, P&lt;.001). The DCH app group had greater retention than the paper arm (t=-3.80, P&lt;.001), and comparable retention to the DCH website group. The DCH app group had greater adherence than all other arms (DCH web: t=-2.42, P=.02; third-party web: t=-3.56, P&lt;.001; and paper arm: t=-4.53, P&lt;.001).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Using an ePRO platform in a longitudinal study increased retention and adhere","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e50225"},"PeriodicalIF":0.0,"publicationDate":"2025-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11967695/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143732115","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences and Needs of Core Participants in Surgical Ward Rounds: A Qualitative Exploratory Study.","authors":"Helle Poulsen, Jane Clemensen, Jette Ammentorp, Poul-Erik Kofoed, Maiken Wolderslund","doi":"10.2196/69578","DOIUrl":"10.2196/69578","url":null,"abstract":"<p><strong>Background: </strong>Surgical ward rounds (SWRs) are typically led by doctors, with limited involvement from key participants, including patients, family members, and bedside nurses. Despite the potential benefits of a more collaborative and person-centered approach, efforts to engage these stakeholders remain rare.</p><p><strong>Objective: </strong>This qualitative exploratory study examined the experiences and needs of doctors, nurses, patients, and their relatives during SWRs as part of a Participatory Design process.</p><p><strong>Methods: </strong>Data were collected through ethnographic field studies, focus groups with the healthcare providers, patients and relatives, and dyadic interviews conducted as part of home visits to patients and their partners after discharge. Field notes and interview data were analyzed using systematic text condensation.</p><p><strong>Results: </strong>Lack of organization, traditional roles, and cultural norms compromised the quality, efficiency, and user experience of SWRs in multiple ways. SWRs were routine-driven, treatment-focused, and received lower priority than surgical tasks. Unpredictability resulted in unprepared participants and limited access for nurses, patients, and relatives to partake.</p><p><strong>Conclusions: </strong>The study identified a gap between the organizational and cultural frameworks governing the SWRs and the experiences and needs of key participants. Digital technologies were perceived as a potential solution to address some of these challenges.</p><p><strong>Clinicaltrial: </strong></p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143732117","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":"Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study.","authors":"Louise Moody, Samantha Clarke, Matt Compton, Rachael Hughson-Gill, Felicity Boardman, Corinna Clark, Pru Holder, James R Bonham, Jane Chudleigh","doi":"10.2196/59686","DOIUrl":"10.2196/59686","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and drawbacks. To inform these decisions, it is important to consider the family experience of screening and the views of the public. Engaging in public dialogue can be difficult. The conditions, screening processes, and associated moral and ethical considerations are complex.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aims to develop a stand-alone online resource to enable a range of stakeholders to understand whether and how next-generation sequencing should be incorporated into the CF screening algorithm.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Around 4 development workshops with policymakers, parents, and other stakeholders informed the design of an interactive activity, including the structure, content, and questions posed. Stakeholders were recruited to take part in the development workshops via purposeful and snowball sampling methods to achieve a diversity of views across roles and organizations, with email invitations sent to representative individuals with lived, clinical, and academic experience related to CF and screening. Ten stakeholders informed the development process including those with lived experience of CF (2/10, 20%), clinicians (2/10, 20%), and representatives from relevant government, charity, and research organizations (6/10, 60%). Vignettes constructed using interview data and translated into scripts were recorded to provide short films to represent and provoke consideration of families' experiences. Participants were recruited (n=6, adults older than 18 years) to test the resulting resource. Study advertisements were circulated via physical posters and digital newsletters to recruit participants who self-identified as having a reading difficulty or having English as a second language.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;An open access online resource, \"Cystic Fibrosis Newborn Screening: You Decide,\" was developed and usability and acceptability tested to provide the \"user\" (eg, a parent, the general public, or a health care professional) with an interactive scenario-based presentation of the potential outcomes of extended genetic testing, allowing them to visualize the impact on families. This included a learning workbook that explains key concepts and processes. The resulting tool facilitates public engagement with and understanding of complex genetic and screening concepts.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Online resources such as the one developed during this work have the potential to help people form considered views and facilitate access to the perspectives of parents and the wider public on genetic testing. These may be otherwise difficult to obtain but are of importance to health care professionals and policymakers.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Trial registration: &lt;/strong&gt;ClinicalTri","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e59686"},"PeriodicalIF":0.0,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11926439/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143575910","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 Smart Sensing Sock to Prevent Diabetic Foot Ulcers: Qualitative Focus Group and Interview Study.","authors":"Jenny Corser, Irantzu Yoldi, Neil D Reeves, Pete Culmer, Prabhuraj D Venkatraman, Giorgio Orlando, Rory Peter Turnbull, Paul Boakes, Eric Woodin, Roger Lightup, Graham Ponton, Katherine Bradbury","doi":"10.2196/59608","DOIUrl":"10.2196/59608","url":null,"abstract":"<p><strong>Background: </strong>Diabetic foot ulcers are common and costly. Most cases are preventable, although few interventions exist to reliably support patients in performing self-care. Emerging technologies are showing promise in this domain, although patient and health care provider perspectives are rarely incorporated into digital intervention designs.</p><p><strong>Objective: </strong>This study explored patient and health care provider feedback on a smart sensing sock to detect shear strain and alert the wearer to change their behavior (ie, pause activity and check their feet) and considered how patient experience and attitudes toward self-care are likely to impact uptake and long-term effective engagement with the device to curate guiding principles for successful future intervention development.</p><p><strong>Methods: </strong>This qualitative study combined semistructured interviews and a focus group alongside a participant advisory group that was consulted throughout the study. In total, 20 people with diabetic neuropathy (n=16, 80% with history of diabetic foot ulcers) and 2 carers were recruited directly from podiatry clinics as well as via a recruitment network and national health mobile app for one-to-one interviews either in person or via landline or video call. A total of 6 podiatrists were recruited via professional networks for 1 virtual focus group. Participants were asked about their experience of diabetic foot health and for feedback on the proposed device, including how it might work for them in daily life or clinical practice. The data were analyzed thematically.</p><p><strong>Results: </strong>Three main themes were generated, each raising a barrier to the use of the sock complemented by potential solutions: (1) patient buy-in-challenged by lack of awareness of risk and potentially addressed through using the device to collect and record evidence to enhance clinical messaging; (2) effective engagement-challenged by difficulties accepting and actioning information and requiring simple, specific, and supportive instructions in line with podiatrist advice; and (3) sustained use-challenged by difficulties coping, with the possibility to gain control through an early warning system.</p><p><strong>Conclusions: </strong>While both patients and podiatrists were interested in the concept, it would need to be packaged as part of a wider health intervention to overcome barriers to uptake and longer-term effective engagement. This study recommends specific considerations for the framing of feedback messages and instructions as well as provision of support for health care providers to integrate the use of such smart devices into practice. The guiding principles generated by this study can orient future research and development of smart sensing devices for diabetic foot care to help optimize patient engagement and improve health outcomes.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e59608"},"PeriodicalIF":0.0,"publicationDate":"2025-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11888051/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143417018","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":"Value Propositions for Digital Shared Medication Plans to Boost Patient-Health Care Professional Partnerships: Co-Design Study.","authors":"Benjamin Bugnon, Francesca Bosisio, Alain Kaufmann, Pascal Bonnabry, Antoine Geissbuhler, Christian von Plessen","doi":"10.2196/50828","DOIUrl":"10.2196/50828","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Health authorities worldwide have invested in digital technologies to establish robust information exchange systems for improving the safety and efficiency of medication management. Nevertheless, inaccurate medication lists and information gaps are common, particularly during care transitions, leading to avoidable harm, inefficiencies, and increased costs. Besides fragmented health care processes, the inconsistent incorporation of patient-driven changes contributes to these problems. Concurrently, patient-empowerment tools, such as mobile apps, are often not integrated into health care professional workflows. Leveraging coproduction by allowing patients to update their digital shared medication plans (SMPs) is a promising but underused and challenging approach.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aimed to determine the value propositions of a digital tool enabling patients, family caregivers, and health care professionals to coproduce and co-manage medication plans within Switzerland's national eHealth architecture.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We used an experience-based co-design approach in the French-speaking region of Switzerland. The multidisciplinary research team included 5 patients as co-researchers. We recruited polypharmacy patients, family caregivers, and health care professionals with a broad range of experiences, diseases, and ages. The experience-based co-design had 4 phases: capturing, understanding, and improving experiences, followed by preparing recommendations and next steps. A qualitative, participatory methodology was used to iteratively explore collaborative medication management experiences and identify barriers and enabling mechanisms, including technology. We conducted a thematic analysis of participant interviews to develop value propositions for digital SMPs.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;In total, 31 persons participated in 9 interviews, 5 focus groups, and 2 co-design workshops. We identified four value propositions for involving patients and family caregivers in digital SMP management: (1) comprehensive, accessible information about patients' current medication plans and histories, enabling streamlined access and reconciliation on a single platform; (2) patient and health care professional empowerment through the explicit co-ownership of SMPs, fostering coresponsibility, accountability, and transparent collaboration; (3) a means of supporting collaborative interprofessional medication management, including tailored access to information and improved communication across stakeholders; and (4) an opportunity to improve the quality of care and catalyze digital health innovations. Participants discussed types of patient involvement in editing shared information and emphasized the importance of tailoring SMPs to individual abilities and preferences to foster health equity. Integrating co-management into the clinical routine and creating supportive conditions were deemed impor","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e50828"},"PeriodicalIF":0.0,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11815291/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143060812","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}