Soliciting Participant Program Guidance through the Development of An ADRC Participant Advisory Council

Abstract

AbstractBackgroundStudies show that including participants and community members as partnering stakeholders in research contributes to identification of pertinent research questions that might elude investigators; help recruitment, retention, and research protocols; improves the efficacy of health promotion interventions and can enhance dissemination of study results. Participant advisory boards are particularly important for clinical trials and other longitudinal research programs that want to ensure effective enrollment and retention. Participant voices and perspectives are exceedingly useful for refining protocol design, consent form design, technology solutions, and communication materials. Despite these advantages, the majority of ADRCs rely on community advisory boards rather than participant advisory boards for stakeholder input. The Wisconsin Alzheimer’s Disease Research Center (WADRC) created a Participant Advisory Council (PAC) to solicit input on design of recruitment and retention programs, refine research questions and provide input on participant experiences. The outreach and recruitment cores selected two facilitators. PAC facilitators completed an intensive 10‐day training program focused on creating an inclusive environment, encouraging multiple perspectives and full participation from members.MethodWADRC staff identified 10 individuals enrolled in its Clinical Core to participant, eight of which volunteered. The PAC has 7 participants representing the MCI, control and IMPACT cohorts, and 1 study partner. The group is diverse with representation from 4 URG members, 1 veteran, 2 from rural communities; 7 have consented to be brain donors and 5 have completed lumbar punctures. PAC members receive a $50 honorarium each meeting and travel expenses for those living further away.ResultsThe inaugural meeting took place in April 2022 where members learned about the development of the PAC, organization and goals of the WADRC. The PAC meets bi‐monthly. Meetings are hybrid, with periodic in‐person meetings. Faculty and staff learn and benefit from the feedback provided by participants on a variety of topics. To date, the PAC has discussed education programing, how to communicate such programming, and ways to increase retention. The PAC will review and comment on WADRC and ORE Core specific aims in preparation for the upcoming grant renewal.ConclusionMeaningful engagement of participants is essential for long‐term retention and ongoing improvement of WADRC recruitment and retention.