Journal of Participatory Medicine

Artificial intelligence (AI) is increasingly integrated into everyday life. Yet in health care, patients and families are challenged to understand how AI may be helpful. As a result, real-world patient stories remain scarce. Generative AI can serve as a learning partner to help patients interpret complex medical information, prepare for appointments, and navigate care decisions. A case study is presented from the perspective of a caregiver and a clinician colleague, describing how one family used generative AI (ChatGPT; OpenAI) to better understand test results, possible diagnoses and treatments, prepare for visits, and summarize and share information with an extended care team. This paper also shares tips and lessons learned with others navigating similar health care challenges. A first-hand account of family interactions with ChatGPT is described during a period between diagnostic imaging and surgical consultation. Real-world use of AI by a caregiver is showcased, including strategies used to understand and summarize health record data, querying AI using medical documents, and resulting actions taken by the family. Using the case study as a springboard, the authors provide a separate section to share lessons learned for patients and caregivers in their use of AI. The family reported benefits of AI, including the ability to comprehend health information by translating medical records into patient-friendly language; to emotionally process and prepare for visits; to research diagnoses and treatments; to streamline communication with care teams by using concise patient summaries; and to feel more empowered to take timely, informed action. Generative AI can serve as a valuable companion tool for patients and caregivers navigating complex medical information. By translating results, providing education about diagnoses and treatment options, and helping prepare for visits, AI may reduce care delivery delays and raise family confidence in decision-making. However, limitations exist, and patients and caregivers need to validate AI output to ensure accuracy and privacy.

Patients undergoing hematopoietic cell transplant (HCT) and their caregivers are under a significant amount of stress throughout the HCT process with fear of disease recurrence, graft failure, and many other HCT-related complications. However, the needs and perspectives of patients undergoing HCT and their caregivers as dyadic units over the peri-HCT period are continuing to be studied and are an evolving field of research.

The United States faces a persistent maternal mortality crisis, with rates far higher than those in other high-income nations. The mortality rate among Black women is more than 3 times that among White women. Traditional data visualizations, such as bar and line charts, often emphasize aggregate outcomes, masking inequities and failing to reflect patient-level experiences.

The Veterans Health Administration is promoting patient-reported outcome measure (PROM) collection for measurement-based mental health care. Understanding veteran preferences about how and when to complete PROMs is critical to support their implementation.

Recruiting and retaining adequate numbers of eligible participants remain the key challenges in clinical research. Understanding the factors associated with participants’ motivations is essential to support recruitment efforts, reduce early withdrawals, and consolidate commitment. The Oxford University Clinical Research Unit conducted a longitudinal study, named the SEED project, with a cohort of first- and third-year students at the University of Medicine and Pharmacy at Ho Chi Minh City, Vietnam.

Black and Hispanic/Latino communities experience disproportionate chronic pain and are underrepresented in pain research. Transcutaneous auricular vagus nerve stimulation (taVNS) and transcranial magnetic stimulation (TMS) are promising tools for pain management. Therefore, it is critical to ensure that research using these tools engages all communities to make research findings more generalizable and reach all who may benefit. Lack of diversity in the research workforce itself is a key barrier to improving Black and Hispanic/Latino representation in pain research, and video-enhanced recruitment and consenting may be a useful tool to better engage Black and Hispanic/Latino communities.

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.

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.

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.

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.

Digital mental health interventions 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 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-adapted an existing digital platform – i-Spero – 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.

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.