Perceptions and barriers to clinical trials participation among African-American men and women in a faith-based community in the south

BACKGROUND: African Americans (AAs) are more likely to die from cancer than all other racial groups. However, AAs represent less than 10% of participants in cancer-related clinical trials (CTs). Prior research has demonstrated provider, patient, and system level barriers to CT participation. The majority of this research, however, has been conducted with AA women. Our goal was to assess current knowledge about and participation in CTs; attitudes about CTs; barriers and incentives for CT participation; and preferred methods for receiving information about CTs among AAs in a faith-based community. METHODS: Twenty-two 90-minute focus groups were conducted with 81 AA men and women (ages 51.2 + 11.12). Transcripts were organized and themes were identified through a master codebook. RESULTS: Participants had limited awareness and knowledge of CTs. The majority had not participated in or discussed CTs with their doctors. However, most participants reported being comfortable having such discussions with their doctor. The most commonly reported barrier to participation was schedule fit, followed by transportation, distrust, and complicated informed consent. Motivations to participating included monetary incentives, research benefiting a friend/family member, and “free” health care. The most frequently recommended places for CT advertisements were television, radio, and newspaper. CONCLUSIONS: CTs targeting AAs should use clear and culturally-appropriate strategies to increase individuals' awareness about CTs and the benefits of cancer research. Strategies may include using traditional communication mediums to inform AAs about the ways CTs benefit their community. Additionally, researchers should make accommodations to help AAs overcome barriers to CT participation.