Cancer clinical trial participation: a qualitative study of Black/African American communities' and patient/survivors' recommendations

Background Black/African Americans experience disproportionate cancer burden and mortality rates. Racial and ethnic variation in cancer burden reflects systemic and health-care inequities, cancer risk factors, and heredity and genomic diversity. Multiple systemic, sociocultural, economic, and individual factors also contribute to disproportionately low Black/African American participation in cancer clinical trials.Methods The Participatory Action for Access to Clinical Trials project used a community-based participatory research approach inclusive of Black/African American community-based organizations, Henry Ford Health, and the University of Michigan Urban Research Center. The project aims were to understand Black/African Americans' behavioral intentions to participate in cancer clinical trials and to obtain recommendations for improving participation. Audio-recorded focus group data were transcribed and coded, and searches were conducted to identify themes and subthemes. Representative text was extracted from the transcripts.Results Six community focus group discussions (70 participants) and 6 Henry Ford Health patient/survivor focus group discussions (29 participants) were completed. General themes related to trial participation were identified, including (1) systemic issues related to racism, health disparities, and trust in government, health systems, and clinical research; (2) firsthand experiences with health care and health systems; (3) perceived and experienced advantages and disadvantages of clinical trial participation; and (4) recruitment procedures and personal decision-making processes. Specific recommendations on how to address barriers were obtained.Conclusions Community-based participatory research is effective in bringing communities equitably to the table. To build trust, health systems must provide opportunities for patients and communities to jointly identify factors affecting cancer clinical trial participation, implement recommendations, and address health disparities.