African Americans and Clinical Research: Evidence Concerning Barriers and Facilitators to Participation and Recruitment Recommendations

• Published in: The Gerontologist Vol. 57; no. 2; pp. 348 - 358
• Main Authors: Hughes, Travonia B, Varma, Vijay R, Pettigrew, Corinne, Albert, Marilyn S
• Format: Journal Article
• Language: English
• Published: United States Oxford University Press 01-04-2017
• Subjects: African Americans; Aged; Alzheimer Disease; Attitude; Attrition; Biomedical Research; Clergy; Community health care; Community Health Services; Community research; Constraints; Decision making; Female; Focus Groups; Gerontology; Group research; Health Personnel; Health services; Humans; Leadership; Male; Medical decision making; Medical personnel; Middle Aged; Participation; Patient Selection; Recruitment; Trust; Community outreach; Focus groups; Diversity
• ISSN: 0016-9013; 1758-5341
• DOI: 10.1093/geront/gnv118

The goal of the study was to examine barriers and facilitators to clinical research participation among African Americans, as well as recommendations for overcoming these.
Eight focus groups were conducted consisting of 64 individuals. These focus groups targeted 2 groups of individuals: (a) community members, including both individuals involved in research and individuals not involved in research, and (b) community leaders, including clergy, community health care providers and service providers who may influence decisions to participate in research.
Among participants in both groups, the most common barriers to participation included fear and mistrust of research due to multiple factors, such as a lack of information about research and prevailing knowledge of historical occurrences. Facilitators to research participation included intrinsic factors, such as a desire to help others, and extrinsic factors, such as familiarity with the research recruiter. The focus groups also directly engaged participants in discussions of strategies that might improve recruitment, such as the importance of providing personal stories that enable community members to understand the potential benefits of research.
Findings from these focus groups address the mandate from funding agencies that emphasize the importance of including racially diverse populations in clinical research studies, and offer potential solutions for increasing the recruitment and retention of minority participants.