Confronting barriers to African American participation in research studies

Background: Though significant strives have been made in recruiting and retaining ethnic minorities, particularly African Americans (AAs) in large scale research studies, retention still poses a major challenge. Trust seems to be major among several factors that explain why AAs and other minorities have been under-represented in virtually all aspects of clinical research. Objective: This study was designed to: 1) identify barriers and facilitators to retention in research; 2) investigate the perceptions of the obstacles to AA participation/retention in research; and 3) propose and test a theoretical framework for retention of AAs in research. Methods: Systematic literature review was employed to identify emerging themes of facilitators and barriers to retention in the Jackson Heart Study (JHS). JHS is a prospective, epidemiologic, population-based longitudinal study investigating cardiovascular disease among AAs (n=5301) in the Jackson, Mississippi Metropolitan Statistical Area that began September 2000. Mixed methods were employed to analyzed study data (Exams 1, 2000-2004 and Exam 2, 2005-2008). Results: Retention rate between Exams I and II was 85%. Lack of trust was mitigated by effective staff communication, community activities, cultural sensitivity, and taking time to explain study activities to participants in a warm and friendly atmosphere. Social Cognitive Theory was the hypothesized theoretical framework in examining retention of AAs in large scale research studies. Discussion: The retention strategies used by JHS could serve as a retention model for African American and other ethnic minorities in single- and multi-site research studies.