Background: Digital transformation is now a fundamental component of health care systems worldwide. To develop effective digital health strategies, it is essential to examine physicians' perspectives on the barriers and facilitators of implementation, with particular attention to regional and cultural factors influencing technology adoption.
Objective: This study aims to identify and analyze key barriers and facilitators to the implementation of digital health technologies from physicians' perspectives in Russia.
Methods: A 2-phase nationwide mixed methods study was conducted involving 460 physicians from various specialties. The first phase comprised in-depth interviews with 10 physicians to develop a specialized questionnaire. The second phase involved a nationwide cross-sectional survey with 450 physicians using the developed questionnaire. Inclusion criteria were working in a Russian city with a population of more than 100,000, age 22 years and older, at least 3 years of specialty experience, and employment in public or private health care institutions. The analysis focused on 4 categories of digital health technologies: remote consultations, remote monitoring, digital diagnostic solutions, and clinical decision support systems.
Results: The main barriers identified were fear of making erroneous decisions (25% of physicians), technical difficulties (up to 25%), and legal insecurity (21% of physicians). Notably, the barrier profile varied depending on the type of technology. Key drivers for implementation included time saving (59% of physicians), practical benefits (55% of physicians), and legal security (54% of physicians). Additionally, a convenient training organization was a crucial motivator, with the availability of free training (53% of physicians) and provision of study leave (52% of physicians). These facilitators were consistent across all categories of digital solutions. Based on these findings, key recommendations for the implementation of digital transformation in medical organizations were formulated.
Conclusions: The findings highlight the need for comprehensive, technology-specific digital implementation strategies to improve health care digital transformation effectiveness, considering physician concerns about decision-making accuracy, technical challenges, and legal frameworks.
{"title":"Barriers and Facilitators of Digital Transformation in Health Care: Mixed Methods Study.","authors":"Marina Veldanova, Polina Glazkova, Elizaveta Krasilnikova, Marina Kazanfarova, Marina Bezuglova, Ekaterina Sosunova, Marina Zhuravleva","doi":"10.2196/83551","DOIUrl":"https://doi.org/10.2196/83551","url":null,"abstract":"<p><strong>Background: </strong>Digital transformation is now a fundamental component of health care systems worldwide. To develop effective digital health strategies, it is essential to examine physicians' perspectives on the barriers and facilitators of implementation, with particular attention to regional and cultural factors influencing technology adoption.</p><p><strong>Objective: </strong>This study aims to identify and analyze key barriers and facilitators to the implementation of digital health technologies from physicians' perspectives in Russia.</p><p><strong>Methods: </strong>A 2-phase nationwide mixed methods study was conducted involving 460 physicians from various specialties. The first phase comprised in-depth interviews with 10 physicians to develop a specialized questionnaire. The second phase involved a nationwide cross-sectional survey with 450 physicians using the developed questionnaire. Inclusion criteria were working in a Russian city with a population of more than 100,000, age 22 years and older, at least 3 years of specialty experience, and employment in public or private health care institutions. The analysis focused on 4 categories of digital health technologies: remote consultations, remote monitoring, digital diagnostic solutions, and clinical decision support systems.</p><p><strong>Results: </strong>The main barriers identified were fear of making erroneous decisions (25% of physicians), technical difficulties (up to 25%), and legal insecurity (21% of physicians). Notably, the barrier profile varied depending on the type of technology. Key drivers for implementation included time saving (59% of physicians), practical benefits (55% of physicians), and legal security (54% of physicians). Additionally, a convenient training organization was a crucial motivator, with the availability of free training (53% of physicians) and provision of study leave (52% of physicians). These facilitators were consistent across all categories of digital solutions. Based on these findings, key recommendations for the implementation of digital transformation in medical organizations were formulated.</p><p><strong>Conclusions: </strong>The findings highlight the need for comprehensive, technology-specific digital implementation strategies to improve health care digital transformation effectiveness, considering physician concerns about decision-making accuracy, technical challenges, and legal frameworks.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e83551"},"PeriodicalIF":0.0,"publicationDate":"2026-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146120810","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}
Unlabelled: Policies governing health care professionals must be evidence-informed and include meaningful representation of all stakeholders, or commitments to quality and equity will remain shallow rhetoric. Physician associates (PAs), nurse practitioners (NPs), and patients deserve full participation in decisions affecting practice and patient care. The current health care landscape faces unprecedented workforce challenges, requiring a shift toward evidence-informed policy and the meaningful representation of all stakeholders. This editorial aims to advocate for the full participation of PAs, NPs, or advanced practice providers and patient representatives in clinical and policy decisions, contrasting established global models with emerging frameworks to promote a more practical, team-based hierarchy. While recent reviews in the United Kingdom highlight a lack of localized, high-quality data, extensive evidence from the United States and other international contexts demonstrates that PAs and NPs provide safe, effective care with clinical outcomes comparable to physicians. We argue that recognizing these professionals as integral members of the health care workforce, rather than mere stopgaps, is essential for improving care quality and patient well-being. This editorial recommends standardized credentialing, integrated educational pathways, and the inclusion of patient representatives as voting members in policy decisions to foster a truly participatory medicine model.
{"title":"A Call to Recognize the Integral Role of Physician Associates and Nurse Practitioners in Modern Health Care: Editorial.","authors":"Amy Price, Kathleen Price","doi":"10.2196/89262","DOIUrl":"10.2196/89262","url":null,"abstract":"<p><strong>Unlabelled: </strong>Policies governing health care professionals must be evidence-informed and include meaningful representation of all stakeholders, or commitments to quality and equity will remain shallow rhetoric. Physician associates (PAs), nurse practitioners (NPs), and patients deserve full participation in decisions affecting practice and patient care. The current health care landscape faces unprecedented workforce challenges, requiring a shift toward evidence-informed policy and the meaningful representation of all stakeholders. This editorial aims to advocate for the full participation of PAs, NPs, or advanced practice providers and patient representatives in clinical and policy decisions, contrasting established global models with emerging frameworks to promote a more practical, team-based hierarchy. While recent reviews in the United Kingdom highlight a lack of localized, high-quality data, extensive evidence from the United States and other international contexts demonstrates that PAs and NPs provide safe, effective care with clinical outcomes comparable to physicians. We argue that recognizing these professionals as integral members of the health care workforce, rather than mere stopgaps, is essential for improving care quality and patient well-being. This editorial recommends standardized credentialing, integrated educational pathways, and the inclusion of patient representatives as voting members in policy decisions to foster a truly participatory medicine model.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e89262"},"PeriodicalIF":0.0,"publicationDate":"2026-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12829584/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146041636","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}
<p><strong>Background: </strong>The Knowledge Translation Innovation Incubator (KTII) initiative, launched by the Knowledge Translation program of the CHILD-BRIGHT Strategy for Patient-Oriented Research Network, provided funding support for researchers and partners to experiment with various approaches and strategies to support the development of innovative knowledge translation (KT) research in the context of neurodevelopmental disabilities.</p><p><strong>Objective: </strong>We aimed to describe the process and contexts of innovation development in integrated knowledge translation (iKT) practices in patient-oriented research.</p><p><strong>Methods: </strong>We applied an iKT practice to conduct the collective case study of 7 KTII-funded projects. We interviewed 10 researchers, 4 research trainees, 2 clinicians, 2 parentpartners, 2 patient-partners (1 adult and 1 youth), 1 community partner, 1 KT specialist, 1 designer, and 1 research program manager at the middle and the end of the project period. We conducted qualitative content analysis using the Consolidated Framework for Implementation Research to identify and assess patterns of determinants of (1) drivers of innovation, (2) facilitators and barriers to innovation development, and (3) enablers for sustainability of KT products.</p><p><strong>Results: </strong>Innovative KT was majorly driven by the identified know-do gap to meet the needs of people with lived experience. Outer setting constructs, such as funding and partnerships and connections, were not only drivers but also facilitators to innovation development. iKT practices presented in this case study were fostered by researchers' approach to participatory design, involving iterations of listening to emerging ideas and feedback of patient-partners and other partners, and researchers' continuous reflections on their roles in knowledge creation. Despite the challenges in building consensus and the limited time of the fluid process, researchers' strong passion for engagement and value placed on lived experience led to flexible engagement and open communication to create KT products. Intangible outcomes included further relationships at individual and organizational levels, capacity building of young people, and a collective voice to influence communities. Sustainment of the KT products requires not only accessibility and adaptability of the product itself but also mechanisms at inner settings, such as training, continued interest of patient-partners and the community, and institutional partnerships to support the further uptake of the product.</p><p><strong>Conclusions: </strong>This study illustrates the critical roles of researchers in addressing power dynamics and making the research partners' tacit knowledge visible for successful innovative KT. The research landscape should also change in terms of funding and timeline in order to foster researchers' mental models in designing thinking and actions on collaborative research engagement.
{"title":"Integrated Knowledge Translation for Social Innovations: Case Study on Knowledge Translation Innovation Incubator.","authors":"Sakiko Yamaguchi, Alix Zerbo, Connie Putterman, Kristine Russell, Roberta Cardoso, Zachary Boychuck, Keiko Shikako","doi":"10.2196/77581","DOIUrl":"10.2196/77581","url":null,"abstract":"<p><strong>Background: </strong>The Knowledge Translation Innovation Incubator (KTII) initiative, launched by the Knowledge Translation program of the CHILD-BRIGHT Strategy for Patient-Oriented Research Network, provided funding support for researchers and partners to experiment with various approaches and strategies to support the development of innovative knowledge translation (KT) research in the context of neurodevelopmental disabilities.</p><p><strong>Objective: </strong>We aimed to describe the process and contexts of innovation development in integrated knowledge translation (iKT) practices in patient-oriented research.</p><p><strong>Methods: </strong>We applied an iKT practice to conduct the collective case study of 7 KTII-funded projects. We interviewed 10 researchers, 4 research trainees, 2 clinicians, 2 parentpartners, 2 patient-partners (1 adult and 1 youth), 1 community partner, 1 KT specialist, 1 designer, and 1 research program manager at the middle and the end of the project period. We conducted qualitative content analysis using the Consolidated Framework for Implementation Research to identify and assess patterns of determinants of (1) drivers of innovation, (2) facilitators and barriers to innovation development, and (3) enablers for sustainability of KT products.</p><p><strong>Results: </strong>Innovative KT was majorly driven by the identified know-do gap to meet the needs of people with lived experience. Outer setting constructs, such as funding and partnerships and connections, were not only drivers but also facilitators to innovation development. iKT practices presented in this case study were fostered by researchers' approach to participatory design, involving iterations of listening to emerging ideas and feedback of patient-partners and other partners, and researchers' continuous reflections on their roles in knowledge creation. Despite the challenges in building consensus and the limited time of the fluid process, researchers' strong passion for engagement and value placed on lived experience led to flexible engagement and open communication to create KT products. Intangible outcomes included further relationships at individual and organizational levels, capacity building of young people, and a collective voice to influence communities. Sustainment of the KT products requires not only accessibility and adaptability of the product itself but also mechanisms at inner settings, such as training, continued interest of patient-partners and the community, and institutional partnerships to support the further uptake of the product.</p><p><strong>Conclusions: </strong>This study illustrates the critical roles of researchers in addressing power dynamics and making the research partners' tacit knowledge visible for successful innovative KT. The research landscape should also change in terms of funding and timeline in order to foster researchers' mental models in designing thinking and actions on collaborative research engagement.","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e77581"},"PeriodicalIF":0.0,"publicationDate":"2026-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12803437/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145985220","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}
<p><strong>Background: </strong>Shared decision-making is increasingly valued worldwide in pediatric care; nonetheless, its application in Japanese clinical practice remains in its early stages, particularly in areas with substantial medical uncertainty, such as food allergy (FA) management. Although oral immunotherapy is a promising option for children with FA, its long-term effectiveness and safety remain under evaluation, providing families with limited evidence to navigate emotionally complex decisions. Despite this clinical uncertainty, decision aids (DAs) are beneficial for organizing information and supporting patients and families in making value-congruent choices. Involving children in these decisions is increasingly recognized as ethically and developmentally appropriate. DAs clarify treatment options and promote informed collaborative decisions. However, most DAs target adult users and do not explicitly encourage engagement with children's views.</p><p><strong>Objective: </strong>This study aimed to develop a culturally adapted DA for Japanese parents by considering their children's preferences and perspectives.</p><p><strong>Methods: </strong>A paper-based DA was developed through iterative alpha testing and finalized by a multidisciplinary team. In total, 9 parents of children eligible for oral immunotherapy participated in this study and received the DA. Although intended for parents, the DA was structured to prompt reflection on the children's involvement in decision-making. Parents completed structured questionnaires before and 1 week after receiving the DA to assess uncertainty, anxiety, and the burden of FA management. A total of 4 children completed the quality-of-life (QoL) questionnaire. Subsequently, all 9 parents and 4 children participated in semistructured interviews. Parents discussed how they used the DA, their perceptions of its clarity, and their interest in involving their children in decision-making. The children shared their thoughts about participating in decision-making.</p><p><strong>Results: </strong>All 9 parents read the DA and completed the follow-up assessment (100% retention rate). Among them, 4 children participated in pediatric QoL assessments and interviews. Parents' Decisional Conflict Scale scores significantly decreased from 58.3 (SD 29.9) at baseline to 26.7 (SD 24.1) postintervention (t8=2.65; P=.03). The values clarity subscale also significantly declined, from 73.1 (SD 30.6) to 25.9 (SD 26.2) (t8=4.50; P=.002). No significant changes were observed in parental anxiety and QoL. Overall, 7 of the 9 parents explained the treatment options to their child, and 6 reported actively seeking their child's feelings. The interview results suggested that the DA was associated with a shift in the family dynamic "from protecting to partnering."</p><p><strong>Conclusions: </strong>Culturally adapted DAs appear practical and acceptable to Japanese families when making pediatric FA treatment choices. Facilitating
{"title":"Developing a Parent-Focused Decision Aid to Promote Child-Inclusive Shared Decision-Making in Pediatric Oral Immunotherapy: Pragmatic Exploratory Feasibility Study.","authors":"Junko Hayama, Kanako Yamamoto, Kota Hirai, Koichi Yamaguchi, Hiroyuki Mochizuki, Kazuhiro Nakayama","doi":"10.2196/77782","DOIUrl":"10.2196/77782","url":null,"abstract":"<p><strong>Background: </strong>Shared decision-making is increasingly valued worldwide in pediatric care; nonetheless, its application in Japanese clinical practice remains in its early stages, particularly in areas with substantial medical uncertainty, such as food allergy (FA) management. Although oral immunotherapy is a promising option for children with FA, its long-term effectiveness and safety remain under evaluation, providing families with limited evidence to navigate emotionally complex decisions. Despite this clinical uncertainty, decision aids (DAs) are beneficial for organizing information and supporting patients and families in making value-congruent choices. Involving children in these decisions is increasingly recognized as ethically and developmentally appropriate. DAs clarify treatment options and promote informed collaborative decisions. However, most DAs target adult users and do not explicitly encourage engagement with children's views.</p><p><strong>Objective: </strong>This study aimed to develop a culturally adapted DA for Japanese parents by considering their children's preferences and perspectives.</p><p><strong>Methods: </strong>A paper-based DA was developed through iterative alpha testing and finalized by a multidisciplinary team. In total, 9 parents of children eligible for oral immunotherapy participated in this study and received the DA. Although intended for parents, the DA was structured to prompt reflection on the children's involvement in decision-making. Parents completed structured questionnaires before and 1 week after receiving the DA to assess uncertainty, anxiety, and the burden of FA management. A total of 4 children completed the quality-of-life (QoL) questionnaire. Subsequently, all 9 parents and 4 children participated in semistructured interviews. Parents discussed how they used the DA, their perceptions of its clarity, and their interest in involving their children in decision-making. The children shared their thoughts about participating in decision-making.</p><p><strong>Results: </strong>All 9 parents read the DA and completed the follow-up assessment (100% retention rate). Among them, 4 children participated in pediatric QoL assessments and interviews. Parents' Decisional Conflict Scale scores significantly decreased from 58.3 (SD 29.9) at baseline to 26.7 (SD 24.1) postintervention (t8=2.65; P=.03). The values clarity subscale also significantly declined, from 73.1 (SD 30.6) to 25.9 (SD 26.2) (t8=4.50; P=.002). No significant changes were observed in parental anxiety and QoL. Overall, 7 of the 9 parents explained the treatment options to their child, and 6 reported actively seeking their child's feelings. The interview results suggested that the DA was associated with a shift in the family dynamic \"from protecting to partnering.\"</p><p><strong>Conclusions: </strong>Culturally adapted DAs appear practical and acceptable to Japanese families when making pediatric FA treatment choices. Facilitating ","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e77782"},"PeriodicalIF":0.0,"publicationDate":"2026-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12774402/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145913182","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}
Background: Digital mental health interventions (DMHIs) can be particularly effective for young people, who live more of their lives online than older generations. Co-designing mental health support with young people can combat the challenges of a lack of engagement and sustained use. While this is increasingly common, there are often budget and timeline restraints in research settings that limit true co-design. As part of the Nurture-U project exploring a whole-university approach to student mental health, we coadapted an existing digital platform, i-Spero (P1Vital), with university students. This paper is a reflection on the impact that our student advisors had on the end product, and where the guidance of the young people was implemented, and not implemented, within the existing research parameters.
Objective: This study aims to present an inductive analysis of meeting notes and recordings of the co-design process, in order to highlight what aspects of DMHIs our advisors valued and what, as a research team, we were able to implement. The hope is that this will inform future mental health interventions in this age group.
Methods: The i-Spero digital well-being platform was developed over an iterative process with multiple rounds of feedback from student advisors in 2022-2024. An inductive qualitative analysis approach was implemented by 2 authors (NA and JD) on the detailed feedback reports and meeting summaries of this process to generate categories and themes from the student advisors' feedback.
Results: Three themes were created: "Relevance and Usefulness," highlighting the importance of comprehensive features linking in with all aspects university life, while treating young people as adults; "Simplicity and Clarity," with student advisors suggesting edits that removed burden from the user and eased access to support; and "Acceptability and Inclusiveness," ensuring awareness of the needs of students from different backgrounds, and what young people with mental health difficulties may be able to access in times of need.
Conclusions: There are some challenges in ensuring that DMHIs are both comprehensive and simple. These can be met by ensuring the aesthetic design and platform structure are consistent and clear. Co-design and development are crucial due to the difficulty in ensuring that online interventions are relevant to specific audiences in the constantly evolving digital landscape. The structures surrounding our joint adaptation of an existing intervention meant that not all the changes suggested could be implemented. Future work should explore the impact of different participation frameworks when coproducing interventions with young people.
{"title":"Joint Adaptation of a Digital Mental Health Intervention for University Students: Inductive Qualitative Analysis.","authors":"Jemima Dooley, Nouf Alsaadi, Edward Watkins","doi":"10.2196/80776","DOIUrl":"10.2196/80776","url":null,"abstract":"<p><strong>Background: </strong>Digital mental health interventions (DMHIs) can be particularly effective for young people, who live more of their lives online than older generations. Co-designing mental health support with young people can combat the challenges of a lack of engagement and sustained use. While this is increasingly common, there are often budget and timeline restraints in research settings that limit true co-design. As part of the Nurture-U project exploring a whole-university approach to student mental health, we coadapted an existing digital platform, i-Spero (P1Vital), with university students. This paper is a reflection on the impact that our student advisors had on the end product, and where the guidance of the young people was implemented, and not implemented, within the existing research parameters.</p><p><strong>Objective: </strong>This study aims to present an inductive analysis of meeting notes and recordings of the co-design process, in order to highlight what aspects of DMHIs our advisors valued and what, as a research team, we were able to implement. The hope is that this will inform future mental health interventions in this age group.</p><p><strong>Methods: </strong>The i-Spero digital well-being platform was developed over an iterative process with multiple rounds of feedback from student advisors in 2022-2024. An inductive qualitative analysis approach was implemented by 2 authors (NA and JD) on the detailed feedback reports and meeting summaries of this process to generate categories and themes from the student advisors' feedback.</p><p><strong>Results: </strong>Three themes were created: \"Relevance and Usefulness,\" highlighting the importance of comprehensive features linking in with all aspects university life, while treating young people as adults; \"Simplicity and Clarity,\" with student advisors suggesting edits that removed burden from the user and eased access to support; and \"Acceptability and Inclusiveness,\" ensuring awareness of the needs of students from different backgrounds, and what young people with mental health difficulties may be able to access in times of need.</p><p><strong>Conclusions: </strong>There are some challenges in ensuring that DMHIs are both comprehensive and simple. These can be met by ensuring the aesthetic design and platform structure are consistent and clear. Co-design and development are crucial due to the difficulty in ensuring that online interventions are relevant to specific audiences in the constantly evolving digital landscape. The structures surrounding our joint adaptation of an existing intervention meant that not all the changes suggested could be implemented. Future work should explore the impact of different participation frameworks when coproducing interventions with young people.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"18 ","pages":"e80776"},"PeriodicalIF":0.0,"publicationDate":"2026-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12774398/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145913221","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}
Wilson D Pace, Barbara Yawn, Nancy E Maher, Brianna Ericson, Elizabeth W Staton, Paulina Arias Hernandez, Bonnie Telon Sosa, Jean Kruse, Elliot Israel
Background: Community advisors including patients, families, clinicians, and payers are important partners who can guide clinical research; yet, there is little evidence documenting the impact of community engagement on study changes and outcomes.
Objective: This study aims to describe the effect of community advisor input on 2 concerns identified during the conduct of a clinical trial.
Methods: Using data from the PREPARE (Person Empowered Asthma Relief) randomized clinical trial studying the use of inhaled corticosteroid (ICS) as part of rescue therapy for asthma, we examined the effect of protocol changes suggested by community advisors to address study implementation concerns.
Results: Community advisors addressed 2 issues that threatened the success of the research: low response rates to monthly outcome surveys and low reported use of ICS with nebulizer rescue treatments. Initial low survey response rates were addressed by changing reminder frequency, shortening the survey, reducing the burden of logging in, and adding a raffle prize for timely responses. In the pilot phase of the study, the overall 3-month survey response rate was 67% (64 completed of 96 possible surveys). After protocol changes, the survey response rate over the first 3 months was 96.08% (3404 completed of 3543 possible surveys) and was 87.38% (1032 of 1181 participants) for each individual's final 3 months; the overall response rate for the full study was 92.3%. For the full study, 72.1% (n=850) of 1181 participants completed all of their first three surveys compared with only 25% (n=8) of 32 pilot enrollees. Early low use of ICS with nebulizers was addressed by additional communication, reminder stickers, and designing a method to attach a provided ICS inhaler to the nebulizers. The percentage of people reporting use of 3 to 5 puffs of ICS with each nebulizer treatment rose from 42.1% (200/475) in the early full study to 75.4% (525/696) following the protocol changes.
Conclusions: Multicomponent changes to the PREPARE protocol crafted by community advisors were associated with improved monthly survey rates and ICS adherence during nebulizer use.
{"title":"Community Advisors' Effect on a Randomized Pragmatic Clinical Trial for Asthma Treatment: Retrospective Analysis.","authors":"Wilson D Pace, Barbara Yawn, Nancy E Maher, Brianna Ericson, Elizabeth W Staton, Paulina Arias Hernandez, Bonnie Telon Sosa, Jean Kruse, Elliot Israel","doi":"10.2196/84679","DOIUrl":"10.2196/84679","url":null,"abstract":"<p><strong>Background: </strong>Community advisors including patients, families, clinicians, and payers are important partners who can guide clinical research; yet, there is little evidence documenting the impact of community engagement on study changes and outcomes.</p><p><strong>Objective: </strong>This study aims to describe the effect of community advisor input on 2 concerns identified during the conduct of a clinical trial.</p><p><strong>Methods: </strong>Using data from the PREPARE (Person Empowered Asthma Relief) randomized clinical trial studying the use of inhaled corticosteroid (ICS) as part of rescue therapy for asthma, we examined the effect of protocol changes suggested by community advisors to address study implementation concerns.</p><p><strong>Results: </strong>Community advisors addressed 2 issues that threatened the success of the research: low response rates to monthly outcome surveys and low reported use of ICS with nebulizer rescue treatments. Initial low survey response rates were addressed by changing reminder frequency, shortening the survey, reducing the burden of logging in, and adding a raffle prize for timely responses. In the pilot phase of the study, the overall 3-month survey response rate was 67% (64 completed of 96 possible surveys). After protocol changes, the survey response rate over the first 3 months was 96.08% (3404 completed of 3543 possible surveys) and was 87.38% (1032 of 1181 participants) for each individual's final 3 months; the overall response rate for the full study was 92.3%. For the full study, 72.1% (n=850) of 1181 participants completed all of their first three surveys compared with only 25% (n=8) of 32 pilot enrollees. Early low use of ICS with nebulizers was addressed by additional communication, reminder stickers, and designing a method to attach a provided ICS inhaler to the nebulizers. The percentage of people reporting use of 3 to 5 puffs of ICS with each nebulizer treatment rose from 42.1% (200/475) in the early full study to 75.4% (525/696) following the protocol changes.</p><p><strong>Conclusions: </strong>Multicomponent changes to the PREPARE protocol crafted by community advisors were associated with improved monthly survey rates and ICS adherence during nebulizer use.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e84679"},"PeriodicalIF":0.0,"publicationDate":"2025-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12716838/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145795048","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}
<p><strong>Background: </strong>Managing patients with multiple chronic comorbidities is complex and challenging within traditional health care systems due to the need for multidisciplinary expertise, longitudinal tracking, and coordination. The development of collaborative online platforms leveraging user-driven health care (UDHC) and medical cognition principles offers new avenues for addressing these complexities by facilitating remote, participatory, and evidence-informed case management.</p><p><strong>Objective: </strong>The aim of this study was to demonstrate the application of a collaborative online case-based blended learning ecosystem (CBBLE) integrated with a patient journey record (PaJR) for the comprehensive remote management and review of a complex patient case with multiple chronic conditions. The study also aimed to evaluate how participatory medical cognition through this platform supports decision-making, patient empowerment, and clinical outcomes in a resource-constrained rural setting.</p><p><strong>Methods: </strong>A single case study of a 44-year-old female patient from rural India with multiple chronic conditions-including type 2 diabetes mellitus, Meesmann corneal epithelial dystrophy postphototherapeutic keratectomy, recurrent infections, lateral epicondylalgia, and hypertension-was managed remotely from December 2024 to May 2025. Deidentified health data, patient-reported outcomes, biometric monitoring, images, and historical records were shared asynchronously via an online e-log book platform. A global community of multidisciplinary experts engaged in collaborative review, critical evidence appraisal (including artificial intelligence [AI]-assisted literature retrieval), and ongoing clinical discussions. The patient advocate facilitated detailed symptoms and lifestyle logging. This case is intended to illustrate feasibility rather than establish generalizability.</p><p><strong>Results: </strong>The participatory platform enabled multispecialty expert input and integrated patient context to optimize management. The patient reduced antidiabetic medication significantly and discontinued all blood pressure and heart rate medications by March 2025. Lifestyle modifications, muscle-strengthening exercises, and diet adjustments were effectively supported. Expert consensus reclassified her irregular heart rate symptoms as anxiety-related palpitations, safely withdrawing beta-blockers. Collaborative discussions guided conservative management of eye infections and pain syndromes. Despite ongoing challenges with some symptoms (eg, eye issues and arm function), the patient reported improved quality of life, confidence, and satisfaction from reduced medication burden and comprehensive monitoring.</p><p><strong>Conclusions: </strong>This case exemplifies the value of collaborative, multidisciplinary, and technology-enabled participatory medical cognition platforms for managing complex multimorbidity. By integrating patient-reported d
{"title":"Rethinking Complex Care Using Participatory Medical Cognition and User-Driven Learning Amidst Multimorbidity: Participatory Action Research Study.","authors":"Rahul Kulkarni, Mansi Agrawal, Tamoghna Biswas, Madhava Sai Sivapuram, Braahmani Bobba, Nivedita Pal, Sailaja Gade, Rishika Koloti, Abdul Salam, Ayushi Tandon, Champakali Biswas, Aditya Samitinjay Gade, Rakesh Biswas","doi":"10.2196/81950","DOIUrl":"10.2196/81950","url":null,"abstract":"<p><strong>Background: </strong>Managing patients with multiple chronic comorbidities is complex and challenging within traditional health care systems due to the need for multidisciplinary expertise, longitudinal tracking, and coordination. The development of collaborative online platforms leveraging user-driven health care (UDHC) and medical cognition principles offers new avenues for addressing these complexities by facilitating remote, participatory, and evidence-informed case management.</p><p><strong>Objective: </strong>The aim of this study was to demonstrate the application of a collaborative online case-based blended learning ecosystem (CBBLE) integrated with a patient journey record (PaJR) for the comprehensive remote management and review of a complex patient case with multiple chronic conditions. The study also aimed to evaluate how participatory medical cognition through this platform supports decision-making, patient empowerment, and clinical outcomes in a resource-constrained rural setting.</p><p><strong>Methods: </strong>A single case study of a 44-year-old female patient from rural India with multiple chronic conditions-including type 2 diabetes mellitus, Meesmann corneal epithelial dystrophy postphototherapeutic keratectomy, recurrent infections, lateral epicondylalgia, and hypertension-was managed remotely from December 2024 to May 2025. Deidentified health data, patient-reported outcomes, biometric monitoring, images, and historical records were shared asynchronously via an online e-log book platform. A global community of multidisciplinary experts engaged in collaborative review, critical evidence appraisal (including artificial intelligence [AI]-assisted literature retrieval), and ongoing clinical discussions. The patient advocate facilitated detailed symptoms and lifestyle logging. This case is intended to illustrate feasibility rather than establish generalizability.</p><p><strong>Results: </strong>The participatory platform enabled multispecialty expert input and integrated patient context to optimize management. The patient reduced antidiabetic medication significantly and discontinued all blood pressure and heart rate medications by March 2025. Lifestyle modifications, muscle-strengthening exercises, and diet adjustments were effectively supported. Expert consensus reclassified her irregular heart rate symptoms as anxiety-related palpitations, safely withdrawing beta-blockers. Collaborative discussions guided conservative management of eye infections and pain syndromes. Despite ongoing challenges with some symptoms (eg, eye issues and arm function), the patient reported improved quality of life, confidence, and satisfaction from reduced medication burden and comprehensive monitoring.</p><p><strong>Conclusions: </strong>This case exemplifies the value of collaborative, multidisciplinary, and technology-enabled participatory medical cognition platforms for managing complex multimorbidity. By integrating patient-reported d","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e81950"},"PeriodicalIF":0.0,"publicationDate":"2025-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12688023/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145716090","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}
Lars Veldmeijer, Gijs Terlouw, Job Van 't Veer, Jim Van Os, Nynke Boonstra
<p><strong>Background: </strong>Experiences of mental distress are considered difficult to communicate, particularly experiences of psychosis. Research indicates that the frequently used medical focus falls short in capturing the nuanced interpersonal dynamics that these altered states may involve. Psychosis may seem very different from a lived experience perspective than it does from a traditional psychiatric perspective. This calls for innovative lived experience-based methodologies. This paper presents the development and preliminary evaluation of a design prototype co-designed to strengthen the role of people experiencing psychosis in the care process and describes its design rationale.</p><p><strong>Objective: </strong>The aim of this research is 2-fold. First, this study aims to co-design, in partnership with people with lived experience, an approach supported by generative design methodology that enables clients to express their experiences in their own way and evaluate the developed approach with dyads of clients who experienced a first episode of psychosis and professionals. Second, it aims to provide a clear and transparent design rationale for the approach, enabling future designers and researchers to understand its intention.</p><p><strong>Methods: </strong>The study involved co-design workshops, prototype sessions, a small-scale test phase with 7 client-professional dyads, the generation of qualitative data through semistructured interviews, and deductive and inductive thematic analyses.</p><p><strong>Results: </strong>The In Picture Approach was co-designed and tested, and its design rationale was described. The preliminary evaluation indicates that the developed prototype stimulated motivation, dialogue, and reflection of clients, with professionals reporting improved insight into their clients and some reconsiderations in care plans. While the exercises themselves were not always the source of new insights, the conversations they provoked proved meaningful. Clients felt seen and empowered and felt more able to take the initiative. Guided by design frameworks, the design process and design rationale were described, including design principles, supporting theories, working theory, design choices, and coproduced goals, allowing future researchers and designers to build on the concept.</p><p><strong>Conclusions: </strong>This study presents a lived experience-based, co-designed prototype that can be positioned as a potential boundary object, along with its design rationale. Preliminary test results suggest that In Picture Approach can foster meaningful dialogue between client-professional dyads, support clients' self-exploration, and provide professionals with new perspectives on their clients. Although tested on a small scale, the results suggest its potential as a supportive tool within recovery-oriented care; however, broader and longer-term evaluation will be required to establish its contribution to personalized care planning. Th
{"title":"The Design Rationale and Preliminary Evaluation of a Prototype Designed by People With Lived Experience of Psychosis and Professionals: Design Research Study.","authors":"Lars Veldmeijer, Gijs Terlouw, Job Van 't Veer, Jim Van Os, Nynke Boonstra","doi":"10.2196/80184","DOIUrl":"10.2196/80184","url":null,"abstract":"<p><strong>Background: </strong>Experiences of mental distress are considered difficult to communicate, particularly experiences of psychosis. Research indicates that the frequently used medical focus falls short in capturing the nuanced interpersonal dynamics that these altered states may involve. Psychosis may seem very different from a lived experience perspective than it does from a traditional psychiatric perspective. This calls for innovative lived experience-based methodologies. This paper presents the development and preliminary evaluation of a design prototype co-designed to strengthen the role of people experiencing psychosis in the care process and describes its design rationale.</p><p><strong>Objective: </strong>The aim of this research is 2-fold. First, this study aims to co-design, in partnership with people with lived experience, an approach supported by generative design methodology that enables clients to express their experiences in their own way and evaluate the developed approach with dyads of clients who experienced a first episode of psychosis and professionals. Second, it aims to provide a clear and transparent design rationale for the approach, enabling future designers and researchers to understand its intention.</p><p><strong>Methods: </strong>The study involved co-design workshops, prototype sessions, a small-scale test phase with 7 client-professional dyads, the generation of qualitative data through semistructured interviews, and deductive and inductive thematic analyses.</p><p><strong>Results: </strong>The In Picture Approach was co-designed and tested, and its design rationale was described. The preliminary evaluation indicates that the developed prototype stimulated motivation, dialogue, and reflection of clients, with professionals reporting improved insight into their clients and some reconsiderations in care plans. While the exercises themselves were not always the source of new insights, the conversations they provoked proved meaningful. Clients felt seen and empowered and felt more able to take the initiative. Guided by design frameworks, the design process and design rationale were described, including design principles, supporting theories, working theory, design choices, and coproduced goals, allowing future researchers and designers to build on the concept.</p><p><strong>Conclusions: </strong>This study presents a lived experience-based, co-designed prototype that can be positioned as a potential boundary object, along with its design rationale. Preliminary test results suggest that In Picture Approach can foster meaningful dialogue between client-professional dyads, support clients' self-exploration, and provide professionals with new perspectives on their clients. Although tested on a small scale, the results suggest its potential as a supportive tool within recovery-oriented care; however, broader and longer-term evaluation will be required to establish its contribution to personalized care planning. Th","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e80184"},"PeriodicalIF":0.0,"publicationDate":"2025-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12715466/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145678979","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}
Robin Ortiz, Joshua Joseph, Matthew P Johnson, Lainey Moen, Mathias Lalika, Clarence Jones, Irina Bancos, Lisa A Cooper, Sharonne N Hayes, Christi A Patten, LaPrincess C Brewer
Background: Chronic stress in African American individuals is multilayered amid the context of experiences of racism and discrimination. Cortisol dynamic range (CDR) may be an indicator of chronic stress, but CDR is understudied in African American populations compared with White populations, and is hypothesized to differ by sex.
Objective: Using a community-engaged approach within the Fostering African-American Improvement in Total Health! (FAITH!) Heart Health+ ancillary study, we assessed the feasibility of participant-centric CDR collection, and its association with measures for individual, interpersonal, and structural stress and exposure to racism in medically underserved African American women and men.
Methods: Participants residing in the Minneapolis-St Paul and Rochester, Minnesota areas provided survey data (everyday discrimination, perceived stress, mood, sleep quality, and high effort coping measures), and saliva samples (morning and afternoon) via at-home, self-collection kits for cortisol measurement. CDR was calculated as a difference in log cortisol levels (ie, log of the cortisol diurnal peak-to-nadir ratio). Geospatial Area Deprivation Index and the distance lived from George Floyd Square in Minneapolis were calculated. Linear regression examined the association between CDR and outcome variables.
Results: Of consented participants (n=53), 70% (37/53) provided cortisol samples. The final analytic sample included 32 participants with complete and physiological diurnal cortisol curves (mean age 57.5 years, 62.5% [20/32] women). Lower (less dynamic) CDR in women (n=20) was associated with greater perceived stress (β=-0.07, P=.01), greater anxiety (β=-0.06, P=.01), higher Superwoman Schema score (β=-0.02, P=.04), and greater distance from George Floyd Square (β=-0.02, P=.01). No associations were observed in men (P>.05).
Conclusions: The current results suggest that CDR from participant-led saliva collection is feasible and may serve as a biomarker of chronic and physiological stress in African American women, particularly those residing in underresourced areas.
{"title":"A Community-Engaged Approach for Assessment of Cortisol Dynamic Range and Multilevel Chronic Stress in African Americans: FAITH! Heart Health+ Ancillary Study.","authors":"Robin Ortiz, Joshua Joseph, Matthew P Johnson, Lainey Moen, Mathias Lalika, Clarence Jones, Irina Bancos, Lisa A Cooper, Sharonne N Hayes, Christi A Patten, LaPrincess C Brewer","doi":"10.2196/69604","DOIUrl":"10.2196/69604","url":null,"abstract":"<p><strong>Background: </strong>Chronic stress in African American individuals is multilayered amid the context of experiences of racism and discrimination. Cortisol dynamic range (CDR) may be an indicator of chronic stress, but CDR is understudied in African American populations compared with White populations, and is hypothesized to differ by sex.</p><p><strong>Objective: </strong>Using a community-engaged approach within the Fostering African-American Improvement in Total Health! (FAITH!) Heart Health+ ancillary study, we assessed the feasibility of participant-centric CDR collection, and its association with measures for individual, interpersonal, and structural stress and exposure to racism in medically underserved African American women and men.</p><p><strong>Methods: </strong>Participants residing in the Minneapolis-St Paul and Rochester, Minnesota areas provided survey data (everyday discrimination, perceived stress, mood, sleep quality, and high effort coping measures), and saliva samples (morning and afternoon) via at-home, self-collection kits for cortisol measurement. CDR was calculated as a difference in log cortisol levels (ie, log of the cortisol diurnal peak-to-nadir ratio). Geospatial Area Deprivation Index and the distance lived from George Floyd Square in Minneapolis were calculated. Linear regression examined the association between CDR and outcome variables.</p><p><strong>Results: </strong>Of consented participants (n=53), 70% (37/53) provided cortisol samples. The final analytic sample included 32 participants with complete and physiological diurnal cortisol curves (mean age 57.5 years, 62.5% [20/32] women). Lower (less dynamic) CDR in women (n=20) was associated with greater perceived stress (β=-0.07, P=.01), greater anxiety (β=-0.06, P=.01), higher Superwoman Schema score (β=-0.02, P=.04), and greater distance from George Floyd Square (β=-0.02, P=.01). No associations were observed in men (P>.05).</p><p><strong>Conclusions: </strong>The current results suggest that CDR from participant-led saliva collection is feasible and may serve as a biomarker of chronic and physiological stress in African American women, particularly those residing in underresourced areas.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e69604"},"PeriodicalIF":0.0,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12706454/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145655954","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}
Zachary N Goldberg, Maren Susan Fragala, Azia Evans, Steven E Goldberg
Unlabelled: Advancements in diagnostic technologies for the evaluation of infectious disease complaints in the outpatient setting have improved the speed and accuracy of pathogen detection and created the opportunity for higher accuracy in treatment planning. The benefits of these advanced diagnostics insights can be optimized when coupled with robust shared decision-making between the patient and clinician during the clinical encounter. This manuscript describes the process for the integration of results from molecular testing for respiratory tract infection into a shared decision-making framework. It also explores how this synergy may lead to improved patient outcomes, enhanced health care delivery, and more collaborative care, while enhancing diagnosis and treatment of respiratory infections in various clinical settings.
{"title":"Diagnostics and Decisions: Molecular Test Insights in Shared Decision-Making for Managing Respiratory Infections.","authors":"Zachary N Goldberg, Maren Susan Fragala, Azia Evans, Steven E Goldberg","doi":"10.2196/81968","DOIUrl":"10.2196/81968","url":null,"abstract":"<p><strong>Unlabelled: </strong>Advancements in diagnostic technologies for the evaluation of infectious disease complaints in the outpatient setting have improved the speed and accuracy of pathogen detection and created the opportunity for higher accuracy in treatment planning. The benefits of these advanced diagnostics insights can be optimized when coupled with robust shared decision-making between the patient and clinician during the clinical encounter. This manuscript describes the process for the integration of results from molecular testing for respiratory tract infection into a shared decision-making framework. It also explores how this synergy may lead to improved patient outcomes, enhanced health care delivery, and more collaborative care, while enhancing diagnosis and treatment of respiratory infections in various clinical settings.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"17 ","pages":"e81968"},"PeriodicalIF":0.0,"publicationDate":"2025-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12633835/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145565836","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}