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Background: Patient research partners provide tremendous value in improving the methods and execution of health-related studies. For more than a decade, EULAR has been at the forefront of patient involvement, writing guidelines and manuscripts in addition to the advocacy conducted by its PARE members [1]. In the United States, there are fewer resources around patient and public involvement in research, especially for young patient partners and the researchers who want to work with them.
Objectives: To share the development and methods of Young Patients’ Autoimmune Research & Empowerment Alliance (Young Patients’ AREA), a new United States-based group whose mission is to empower young people with autoimmune conditions to access, understand, and have a voice in health research.
Methods: Young Patients’ AREA was created in 2021 through funding awarded by the Patient Centered Outcomes Research Institute (PCORI) with the purpose of building capacity for teens and young adults to be involved in research. While the described methods involved some degree of trial and error, they were also grounded in developmental frameworks on adolescence and emerging adulthood (e.g. Typology of Youth Participation and Empowerment (TYPE) framework [2]), patient engagement literature (e.g. Valuing All Voices framework [3]), and concepts of community organizing. The inaugural cohort of 12 Council Members, who were 16-22 years old and lived with autoimmune conditions, were convened and trained in research methods and ethics, advocacy, and storytelling. Council Members also received individual mentorship around their personal and professional goals. Initially, a Project Team of professionals and two patient representatives made all decisions about the direction of the group: what topics and activities to pursue, who to work with, and how to do it. After completing the first 4 months of training, the Project Team began intentionally transferring power over idea development, activities, and decisions to the Council Members. Through this process, Council Members learned-by-doing and designed a unique community and mission statement that responded to the needs, interests, capacity, and communication styles of themselves and their generational peers. To complete their work, Council Members self-selected into various committees (e.g. grant writing, community outreach, website and social media) depending on their talents and interests. Brief anonymous evaluations were conducted at the end of each monthly Council meeting, and a brainstorm & reflection session for Council Members to voice successes and areas of improvement every 6 months. Council Members were paid a stipend for their engagement.
Results: From its inception, Young Patients’ AREA has produced a number of outputs, including successfully obtaining two additional PCORI Engagement Awards. A steady rotation of 12-16 Council Members is maintained, with Council Members typically leaving during distinct life transitions (e.g. new full-time job, graduate school) and new recruits to take their place. Council Members split their time between 1: collaborating with researchers who request advice on how to complete their studies and 2: demonstrating how young people can use research in their own health management and/or be involved in the research process. They developed a branding and marketing strategy to appeal and show its credibility to both young patients and the professionals who work with them. Channels of asynchronous communication include a website with an updated blog, active Instagram account, semiannual newsletter to educate their peers on the value of research and opportunities to both participate and develop research. Aware of the loneliness and isolation that often occurs within this population, Council Members also lead virtual interactive workshops for peer-to-peer interaction. For all activities, they have designed templates to ensure that all Council Members, no matter their current health status or available time, can contribute their creativity and input. In addition, Council Members have presented their individual stories, and the collective story of Young Patients’ AREA, to professional organizations, patient organizations, and college classes. Using their new skills, individuals have served in different capacities on external research teams. Evaluation shows Council Members remain highly engaged and satisfied with this work and deeply value their community of like-minded peers.
Conclusion: Teens and young adults have the potential to make unique contributions to health research if given the opportunity and appropriate developmental support. At its core, Young Patients’ AREA emphasizes relationship building, communication and transparency, and intentional and consistent re-evaluation of power dynamics. These methods have allowed young patients to exercise their drive, creativity, and lived expertise to develop and sustain a functioning group that educates their peers and advises on ongoing research studies.
REFERENCES: [1] de Wit M, Aouad K, Elhai M, et al. EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 Update. Annals of the Rheumatic Diseases 2024;83:1443-1453.
[2] Wong NT, Zimmerman MA, Parker EA. A typology of youth participation and empowerment for child and adolescent health promotion. American Journal of Community Psychology. 2010; 46:100-114.
[3] Roche P, Shimmin C, Hickes S, et al. Valuing All Voices: Refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach. Research Involvement and Engagement. 2020;6.
Acknowledgements: NIL.
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (