Training Adolescents and Young Adults to be Partners in Research: Co-Creating the Young Patients' Autoimmune Research...

Adolescents 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.

To co-design a model that trains AYAs with autoimmune conditions to be research partners and to evaluate feasibility for future application in other settings.

Together 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.

After 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.

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.

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.