Abstract P291: Understanding Participant Perspectives Towards the Formation of a National Participant Advisory Board Within the Reasons for Geographic and Racial Differences in Stroke (REGARDS) Study: A Qualitative Study

Introduction: While participant advisory boards (PABs) are common among public health initiatives and clinical trials, they are less common among national, epidemiologic cohort studies. PABs could add value to researchers and participants alike, but their formation and functioning in this context is less understood. We aimed to elicit the perspectives of participants from the national REasons for Geographic and Racial Differences in Stroke (REGARDS) Study towards the formation of a PAB, which can inform future efforts to form one for this cohort study and others like it. Methods: REGARDS is a national prospective cohort study that enrolled >30,000 Black and White community-dwelling adults aged ≥45 years from 48 states 2003-2007. Enrollment and follow-up is ongoing and done through mail and telephone. We used a convenience sampling approach to recruit from a subset of participants who responded to a newsletter about joining a PAB. Participants completed a one-on-one telephone or Zoom-based interview with study staff following a semi-structured interview guide. Interviews were recorded and professionally transcribed. Data were organized with NVivo software. Informed by the Cargo and Mercer’s Health Equity Research Practice Framework for Academic-Community Partnerships, we conducted a thematic analysis. Each transcript was independently coded by two team members, then reconciled by a third. Major themes and subthemes were identified. Results: The 18 participants had a median age of 69 years, 67% were women, 39% were Black, and 78% had a college degree or higher. Overall, participants were enthusiastic about the PAB and were inclined to meet as a group regularly via Zoom or telephone. Four key themes emerged: (1) The PAB should form and function with a core set of principles, including: trust, diversity, mutual respect, and accountability; of these, diversity was most important; (2) The PAB should not only inform studies (i.e. research questions, methodology), but also assist with the dissemination of science to diverse networks; (3) A formal process is required to form and maintain the PAB, as well as keeping members engaged; (4) Core values influenced participants’ willingness to serve on the PAB; they included internal motivation, the desire to translate knowledge into action, and social and environmental justice. Conclusion: This study highlights a willingness of participants in large epidemiologic cohort to participate in a PAB. Our results can inform the formation of a PAB in the REGARDS Study, and may be important for other observational cohorts interested in including participants in an advisory capacity.