Perceptions of Clinical Research Participation among African American Women

Abstract

Background: Recruiting minority women into clinical research remains a significant challenge to conducting ethnically representative research. The main objective of this Office on Women's Health, DHHS-funded e-health database evaluation project was to examine African American women 's thoughts and perceptions about the clinical research process and about participation in the University of Michigan Women's Health Registry research database. Methods: Thirty-one African American women were recruited from the community to participate in a total of five 90-minute focus group discussions. All sessions were audiotaped and transcribed verbatim. Thematic content analysis was used to identify relevant themes about participation in clinical research and the Women's Health Registry. Results: Ten common trends were identified. (1) Information about the Women's Health Registry is not reaching the community. (2) Research is perceived as biased to benefit Caucasians. (3) Community involvement by the research team is critical for trust to develop. (4) Research directly relevant to African Americans or their community will encourage participation. (5) Researchers should use existing networks and advertise in appropriate locations. (6) The community needs more information concerning research. (7) Compensation is important. (8) Research that addresses a personal or family medical problem encourages involvement. (9) Minority representation on the research team is a motivator to participation. (10) There is limited time for healthcare-related activities. Conclusions: Successful recruitment strategies for African American women should feature community-based, culturally appropriate approaches. Online research databases for subject recruitment will likely be successful only if implemented within a broader community-oriented program.