Ethnic minority participation in Community Clinical Oncology Program (CCOP) research studies

Abstract

1550 Background: Low minority participation in clinical research is concerning for both research and for the public health. Objective: The aim of this project was to investigate barriers and successes in minority participation in cancer medical research and cancer clinical trials. More specifically to: (1) determine major environmental, cultural, and economic barriers confronted by minority patients with cancer; and (2) determine the components of an environment that supports greater recruitment and retention of minorities to Clinical Community Oncology Practice (CCOP) cancer studies. Methods: Six focus groups consisting of 8 to 12 current or former minority cancer patients and 18 health care practitioners, from geographically diverse areas, were recruited to participate in this qualitative study. Focus group participants were asked questions about their attitudes and beliefs concerning their cancer and medical research. Health care practitioners were questioned on site recruitment and retention practices. Results: Two major thematic areas emerged for providers: barriers minority recommendation to trials and reasons for why minorities are underrepresented in trials. The three thematic areas for focus group participants were perceptions of medical research, reasons for participation or nonparticipation, and effects of Tuskegee Syphilis Study on participation. Conclusions: The Tuskegee Syphilis Study may have been a major impetus for why many Blacks and other minorities in this sample do not participate in medical research. Providers seem to state what was obviously important in connecting with the community, however, their actions in the community varied. This qualitative study gives voice to communities which mistrust the medical community in general and medical research in particular, and highlights the need for interventions bridging the community and research. No significant financial relationships to disclose.