Black/African American participation in cancer clinical trials: A qualitative study of community members, patients with cancer, and survivors (Detroit, MI) using CBPR.
Authors: Antwi Sylvester , Kaljee Linda , Dankerlui Doreen , Walker Eleanor M. , Larrious-Lartey Harriet , Brush Barbara , Israel Barbara , Harris Donna , Chue Sophia , Cawthome Nayomi , Mills Cassandra , Ofori Aboah Valerie , Daniels Gwendolyn , Aduse-Poku Livingstone , Coombe Chris M. , Rowe Zachary , Patman La'Toshia , Ramocan Wayne , White Perkins Denise , Jiagge Evelyn Mawunyo 
Published: May 2024

e13743

Background: Black/African Americans (B/AA) have a disproportionate cancer burden and the highest mortality rates of any racial/ethnic group for most cancers. Racial/ethnic variation in cancer burden reflects health inequities, differences in risk factors, heredity and genomic diversity, and lack of access to and participation in cancer prevention, screening, treatment, and clinical trials. Twelve percent of the United States population are B/AA; however, only about 5% B/AA participate in clinical trials. As a result, data regarding tumors from B/AA are not equally represented in new drug discovery efforts. Methods: Participatory Action for Access to Clinical Trials (PAACT) used a Community Based Participatory Research (CBPR) approach to support a partnership between Henry Ford Health (HFH) and eight African American, Caribbean, and continental African community-based organizations (CBOs). Focus group data were collected in-person and virtually with representatives from the CBOs and HFH cancer survivors. CBOs participated in Steering Committee meetings throughout the project and two community forums to obtain feedback on recommendations identified through the qualitative data. Results: Factors contributing to participation in cancer clinical trials included systemic issues related to racism, health disparities and trust in government, health systems, and clinical research. Other factors included personal experiences with healthcare systems, healthcare provider-patient communication, socio-economic barriers (e.g., time away from work, family), and perceptions of future benefits from trials for B/AA communities. Recommendations included: 1) on-going health system outreach to B/AA communities regarding cancer prevention and treatment, as well as clinical trials. 2) B/AA community liaisons and cancer survivors as providers of information related to clinical trials; 3) two-way provider-patient communication to address questions and concerns about treatment options and trial information; 4) monetary compensation for indirect trial costs; 5) information on the importance of diversity within trials; and 6) ensuring information is provided to patients’ support networks. Conclusions: CBPR is effective in the identification of factors that influence participation in clinical trials. Building trust between patients and the healthcare system begins before patients walk into a clinic and every interaction contributes to institutional worthiness of community and patient trust. It is possible and imperative for health systems to work with B/AA communities and jointly identify and implement recommendations to ensure informed decision-making regarding trial participation. We are currently designing intervention strategies based on the recommendations for implementation at HFH.