Improving African American women's engagement in clinical research: A systematic review of barriers to participation in clinical trials.

ABSTRACT

BACKGROUND: Despite multiple efforts, African American women continue to be inadequately represented in clinical research while being overrepresented in disease, producing research results with limited generalizability to this specific population. Our understanding of the barriers to participation in clinical trials among racial/ethnic minority patients in general has evolved, but few studies have examined the reasoning behind African American women's decision to not participate in clinical trials. OBJECTIVE: The primary aim was to conduct a systematic review to identify the barriers reported by African American women regarding participation in clinical research to help explain the low levels of enrollment. We also suggest strategies that can be implemented by the research community to lessen the effect of those barriers. METHODS: Searches were conducted through MEDLINE, SCOPUS, Web of Science, and Google Scholar. Following a set of eligibility criteria, a total of 18 peer-reviewed journal articles were selected and analyzed to render categories and themes. RESULTS: Across studies aimed at examining their unique perspective, the reasons mentioned by African American women for not participating in clinical research were grouped in three broad categories 1) weak relationship with the medical and research community, 2) high cost to participation, and 3) personal and "out-of-reach" circumstances. Reasons pertaining to participants' relationship with physicians/researchers were most salient. DISCUSSION: A targeted and comprehensive understanding of the barriers impacting African American women's decision to participate in clinical research informs population-specific recruitment and research strategies for future studies. Additional studies assessing barriers to clinical trial research participation that intentionally report on disaggregated data by not only race/ethnicity but also sex are essential to improving the risk/benefit profile for a wide range of prevention and treatment efforts. This improved understanding of the differences between subgroups within minority populations has implications for bolstering culturally sensitive messages to enhance the engagement of minority communities in clinical trial research.