Community Engagement: Lessons Learned from the AAASPS and SDBA

Community engagement is a means to help overcome challenges to the delivery of health care and preventative services. On the occasion of the 2021 International Stroke Conference Edgar J. Kenton III Lecture, I review community engagement strategies utilized in the AAASPS trial (African-American Antiplatelet Stroke Prevention Study) and SDBA (Studies of Dementia in the Black Aged) observational studies that I directed. The main community engagement strategies included use of home visits (bringing the study to the community), engagement of churches, community advisors, community physicians, other healthcare providers, major Black community organizations, and utilization of diversity training. Community engagement strategies were a major component of AAASPS and SDBA that helped to ensure successful recruitment and retention of an underrepresented community in clinical trial and observational studies. Lessons learned from these studies largely carried out in the 1980s and 1990s helped to dispel myths that Blacks could not be recruited into large-scale clinical trials, emphasized the importance of studying underrepresented groups with adequate statistical power to test primary study hypotheses, and provided foundational recruitment and retention methods for future consideration.