ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Training Adolescents and Young Adults to be Partners in Research: Co-Creating the Young Patients' Autoimmune Research and Empowerment Alliance.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
1 citing paper in PubMed.
- Training Adolescents and Young Adults to be Partners in Research: Co-Creating the Young Patients' Autoimmune Research and Empowerment Alliance.Health expectations : an international journal of public participation in health care and health policy · 2026Article
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Authors and funding
6 authors.
Funding
Abstract
backgroundAdolescents and young adults (AYAs) are frequently excluded from efforts to include patient research partners due to systemic and procedural barriers and lack of awareness by both researchers and patients. For meaningful collaboration to occur, patient partners must be prepared with appropriate knowledge, skills, and confidence.
objectiveTo co-design a model that trains AYAs with autoimmune conditions to be research partners and to evaluate feasibility for future application in other settings.
methodsTogether with the Project Team, 12 AYAs with autoimmune conditions (16-22 years old) co-created the Young Patients' Autoimmune Research and Empowerment Alliance (YP AREA), a council aimed at elevating young patients' voices in research. AYA Council Members (CMs) completed two stages of training: (1) Educate (exposure to the research process) and (2) Empower (practice with advocating) and received 1-1 mentoring focused on individual goals. Two surveys (the Patient Engagement in Research Scale and the Research and Empowerment Survey) and qualitative interviews were conducted at the end of each stage to assess research readiness, empowerment, and perceptions of meaningful collaboration.
resultsAfter training activities, CMs reported personal growth and feeling like they were ready to partner with researchers. CMs highlighted the importance of community with like-minded peers. Survey scores showed that CMs felt highly engaged in the group process and had high levels of psychological empowerment and research readiness after trainings. DISCUSSION: Young patients can obtain high levels of engagement in the research process. This intentional training process was designed to meet AYAs at their developmental stage through individual mentoring, hands-on group activities, and community building. As a result, AYAs were empowered to advocate within research and academia for the healthcare needs of their communities. PATIENT OR PUBLIC CONTRIBUTION: All Project Team Members and Council Members identify as patients with autoimmune conditions. Young patients co-designed all the activities included in this manuscript unless otherwise stated, co-conducted the evaluation, and co-authored this manuscript.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.