Training Adolescents and Young Adults to be Partners in Research: Co‐Creating the Young Patients' Autoimmune Research and Empowerment Alliance.
Background: 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 appr...
| Publicado en: | Health Expectations Vol. 29; no. 2; pp. 1 - 12 |
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| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Apr2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=193365363&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 193365363 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13696513 EVY jtl: Health Expectations issn: 13696513 maglogo: Y pubinfo: dt: Apr2026 vid: 29 iid: 2 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 193365363 193365363 193365363 10.1111/hex.70642 193365363 ppf: 1 ppct: 11 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Training Adolescents and Young Adults to be Partners in Research: Co‐Creating the Young Patients' Autoimmune Research and Empowerment Alliance. aug: au: Khurana, Anya R. Anderson, Kaye Carandang, Kristine Chintagunta, Ela Ziegler, Jennifer Wells, Courtney K. affil: Young Patients' Autoimmune Research and Empowerment Alliance, Young Patients' Autoimmune Research & Empowerment Alliance, San Diego California,, USA sug: subj: Autoimmune Diseases Research, Medical Research Subject Recruitment Patient Education Patient Participation Evaluation Patient Participation Evaluation Empowerment Evaluation Human Funding Source Adolescence Young Adult Pilot Studies Mentorship Multimethod Studies Interviews Patient Attitudes Research Personnel Collaboration Personal Growth Scales Data Analysis Software Summated Rating Scaling United States Male Female Adolescent: 13-18 years Male Female ab: Background: 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. Objective: 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. Methods: 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. Results: 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. 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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