Journal of Participatory Medicine

A Call to Recognize the Integral Role of Physician Associates and Nurse Practitioners in Modern Health Care: Editorial

2026-01-23T12:30:08-05:00

Abstract Policies governing healthcare professionals must be evidence-informed and include meaningful representation of all stakeholders, or commitments to quality and equity will remain shallow rhetoric. Physician associates, nurse practitioners and patients deserve full participation in decisions affecting their practice and patient care. The current healthcare 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 Physician Associates (PAs), Nurse Practitioners (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 (UK) highlight a lack of localized, high-quality data, extensive evidence from the United States (US) 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 healthcare 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.

Integrated Knowledge Translation for Social Innovations: Case Study on Knowledge Translation Innovation Incubator

2026-01-14T14:30:10-05:00

Background: The Knowledge Translation Innovation Incubator (KTII) initiative, launched by the Knowledge Translation program of the CHILD-BRIGHT Strategic Patient Oriented Research Network, provided funding support for researchers and partners to experiment with various approaches and strategies to support the development of innovative KT research in the context of neurodevelopmental disabilities. Objective: We aimed to describe the process and contexts of innovation development in integrated KT (iKT) practices in patient-oriented research. Methods: We applied an iKT practice to conduct the collective case study of seven KTII-funded projects. We interviewed ten researchers, four research trainees, two clinicians, two family/parent partners, two patient partners (one adult and one youth), one community partner, one KT specialist, one designer, and one research program manager, at the middle and the end of the project period. We conducted qualitative content analysis using the Consolidate Framework for Implementation Research (CFIR) to identify and assess patterns of determinants of 1) drivers of innovation, 2) facilitators and barriers to innovation development, 3) enablers for sustainability of KT products. Results: Innovative KT was majorly driven by the identified know-do gap to meet the needs of people with lived experience. Outer settings constructs, such as funding and partnerships and connections, were not only drivers but also facilitators to innovation development. IKT practices presented in the current 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 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 collective voice to influence communities. Sustainment of the KT products requires 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. Conclusions: The current study illustrates the critical roles of researchers in addressing power dynamics and making the research partners’ tacit knowledge visible for successful innovate 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.

Developing a Parent-Focused Decision Aid to Promote Child-Inclusive Shared Decision-Making in Pediatric Oral Immunotherapy: Pragmatic Exploratory Feasibility Study

2026-01-06T16:30:03-05:00

Background: 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 (OIT) 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. Objective: This study aimed to develop a culturally adapted DA for Japanese parents by considering their children's preferences and perspectives. Methods: A paper-based DA was developed through iterative alpha testing and finalized by a multidisciplinary team. Nine parents of children eligible for OIT 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. Four children completed the quality-of-life (QoL) questionnaire. Subsequently, all nine parents and four children participated in semi-structured 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. Results: All nine parents read the DA and completed the follow-up assessment (100% retention rate). Among them, four children participated in pediatric QoL assessments and interviews. Parents' Decisional Conflict Scale scores significantly decreased from 58.3 ± 29.9 at baseline to 26.7 ± 24.1 post-intervention (t(8) =2.65, P =.03). The values clarity subscale also significantly declined, from 73.1 ± 30.6 to 25.9 ± 26.2 (t(8) =4.50, P =.002). No significant changes were observed in parental anxiety and QoL. Seven of the nine parents explained the treatment options to their child, and six 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." Conclusions: Culturally adapted DAs appear practical and acceptable to Japanese families when making pediatric FA treatment choices. Facilitating parent–child dialogue may promote more inclusive decision-making. Nevertheless, further research with larger samples and longer follow-up periods is warranted to confirm these findings and refine the tool.

Joint Adaptation of a Digital Mental Health Intervention for University Students: Inductive Qualitative Analysis

2026-01-06T16:15:07-05:00

Background: Introduction: Digital mental health interventions can be particularly effective for young people, who live more of their lives online than older adults and may not have the mental health literacy to access other resources. Co-designing and developing mental health support with young people can combat the challenges of lack of engagement and sustained use. While this is increasingly common, there are often budget and timeline restraints in research settings which limits true co-design. As part of the Nurture-U project exploring a whole-university approach to student mental health, we co-developed an existing digital platform – i-Spero – with university students. This paper is a reflection of 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: To present an inductive analysis of meeting notes and recordings of the co-design process, in order to highlight what aspects of digital mental health interventions our advisors valued. The hope is that this will inform future mental health interventions in this age group. Methods: The i-Spero digital wellbeing platform was developed over an iterative process with multiple rounds of feedback from student advisors in 2022-24. An inductive qualitative analysis approach was implemented by two authors 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 digital mental health interventions are both comprehensive and simple. These can be met in ensuring the aesthetic design and platform structure are consistent and clear. The themes generated in this project mirror those found in previous literature, highlighting the need to learn from previous projects when designing new interventions. However, co-design and development is crucial in each individual project due to the difficulty in ensuring that online interventions are relevant to specific audiences in the constantly evolving digital landscape.

Community Advisors’ Effect on a Randomized Pragmatic Clinical Trial for Asthma Treatment: Retrospective Analysis

2025-12-19T16:45:08-05:00

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: To describe the effect of community advisor input on two concerns identified during the conduct of a clinical trial. Methods: Using data from the PREPARE randomized clinical trial studying the use of inhaled glucocorticoid (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 two issues that threatened the success of the research: low response rates to monthly outcomes 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 66.7%. After protocol changes, the survey response rate over the first 3 months was 95.8% and was 87.4% for each individual’s final 3 months; the overall response rate for the full study was 92.3%. For the full study 72% of participants completed all of their first three surveys compared with only 25% of 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 percent of people reporting use of 3 to 5 puffs of ICS with each nebulizer treatment rose from 42.1% (early full study) to 75.4% following the protocol changes. Conclusions: Multi-component changes to the PREPARE protocol crafted by community advisors were associated with improved monthly survey rates and ICS adherence during nebulizer use. Clinical Trial: clinicaltrialsNCT02995733; https://clinicaltrials.gov/study/NCT02995733

Rethinking Complex Care Using Participatory Medical Cognition and User-Driven Learning Amidst Multimorbidity: Participatory Action Research Study

2025-12-09T13:30:05-05:00

Background: Managing patients with multiple chronic comorbidities is complex and challenging within traditional healthcare systems due to the need for multidisciplinary expertise, longitudinal tracking, and coordination. The development of collaborative online platforms leveraging user-driven healthcare (UDHC) and medical cognition principles offers new avenues for addressing these complexities by facilitating remote, participatory, and evidence-informed case management. Objective: To demonstrate the application of a collaborative online Case Based Blended Learning Ecosystem (CBBLE) integrated with Patient Journey Records (PaJR) for the comprehensive remote management and review of a complex patient case with multiple chronic conditions. The study aimed to evaluate how participatory medical cognition through this platform supports decision-making, patient empowerment, and clinical outcomes in a resource-constrained rural setting. Methods: A single case study of a 44-year-old female patient from rural India with multiple chronic conditions—including type 2 diabetes mellitus, Meesmann’s corneal epithelial dystrophy post-phototherapeutic keratectomy, recurrent infections, lateral epicondylalgia, and hypertension—was managed remotely from December 2024 to May 2025. De-identified 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 AI-assisted literature retrieval), and ongoing clinical discussions. The patient advocate facilitated detailed symptom and lifestyle logging. AI tools supplemented information synthesis without replacing expert judgment. Outcomes were documented using structured PaJR case reports. Results: The participatory platform enabled multi-specialty expert input and integrated patient context to optimize management. The patient reduced anti-diabetic medication significantly (from a previous higher dosage regimen to 750 mg/day Metformin alone) 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. AI tools facilitated rapid evidence retrieval and debate over therapeutic uncertainties. Despite ongoing challenges with some symptoms (e.g., eye issues, arm function), the patient reported improved quality of life, confidence, and satisfaction from reduced medication burden and comprehensive monitoring. The platform fostered shared learning for clinicians and empowered the patient to become an active knowledge contributor. Conclusions: This case exemplifies the value of collaborative, multidisciplinary, and technology-enabled participatory medical cognition platforms for managing complex multimorbidity. By integrating patient-reported data, AI-supported evidence synthesis, and asynchronous expert consultation, such ecosystems can enable holistic, evidence-based care, reduce overtreatment, support patient empowerment, and enhance clinical education—particularly in resource-limited and geographically dispersed contexts. Challenges remain in data completeness and remote physical assessment. Wider adoption of these platforms could significantly improve management of complex patients and foster a new model of user-driven, participatory healthcare and learning.

The Design Rationale and Preliminary Evaluation of a Prototype Designed by People With Lived Experience of Psychosis and Professionals: Design Research Study

2025-12-04T14:30:22-05:00

Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusions: 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. The co-design approach stimulated lived experience leadership by giving real decision-making power to people with lived experience of psychosis. Most importantly, this paper shows why it matters to make design rationales explicit in a field where they are often missing.

A Community-Engaged Approach for Assessment of Cortisol Dynamic Range and Multilevel Chronic Stress in African Americans: FAITH! Heart Health+ Ancillary Study

2025-12-01T14:00:44-05:00

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.

Diagnostics and Decisions: Molecular Test Insights in Shared Decision-Making for Managing Respiratory Infections

2025-11-20T14:30:05-05:00

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 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.

Cultural Feasibility of Conversational Robots for Dementia Care in India: Participatory Design Study

2025-11-06T16:30:28-05:00

Background: Dementia poses a significant challenge in India. The rising incidence rates, limited resources, and restricted clinician access have contributed to a staggering 90% gap in diagnosis and care. Conversational technology provides a natural user interface with the potential to promote the independence, well-being, and safety of people living with dementia at home. However, the feasibility of implementing such technology to support people living with dementia across diverse cultural and economic settings remains underexplored. Objective: This study aimed to assess the cultural feasibility of conversational robots for dementia care in India, a culturally underserved context in robotics and artificial intelligence (AI) for aging and dementia care. Methods: We involved 29 stakeholders, including people living with dementia, caregivers, and dementia care professionals. We evaluated (1) the engagement of people living with dementia with 3 conversational robots with varying interactive modalities (a voice agent, a virtual affective robot, and an embodied robot), (2) robot acceptance, and (3) stakeholder perspectives on the benefits and challenges of deploying conversational AI in India. Results: People living with dementia were willing to engage in verbal dialogue with conversational robots. Stakeholders perceived the technology as beneficial for supporting daily tasks at home, reducing loneliness, and enhancing cognitive function. We identified design adaptations to address feasibility challenges in India, including the need to (1) adapt interaction style to use a kind tone, appreciative language, and customizable facial expressions; (2) improve speech recognition for local accents interpretation and noisy settings; and (3) introduce prototypes in local clinics to promote familiarity. Conclusions: This work offers novel insights into cultural acceptance, human-robot engagement, and perceived utility for dementia care, along with key design implications for integrating conversational AI into care settings in India.