Cancer Clinical Trial Participation: A Qualitative Study of Black/African American Communities' and Patient/Survivors' Recommendations.

Abstract

Background: Black/African Americans experience a disproportionate cancer burden and mortality rates. Racial/ethnic variation in cancer burden reflects systemic and healthcare inequities, cancer risk factors, and heredity and genomic diversity. Multiple systemic, socio-cultural, 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 utilized a community-based participatory research (CBPR) approach inclusive of Black/African American community-based organizations (CBOs), Henry Ford Health (HFH), 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, 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 six HFH 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 healthcare 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: CBPR 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.