Abstract A040: Barriers to African American participation in clinical trials: A qualitative study of Central Brooklyn residents
Authors: Johnson Cicely K. 
Published: August 2020

In 2014, African-Americans made up 13% of the population, yet only comprised 5% of clinical trial participants. For diseases that are more associated with Blacks like sickle health, and other diseases with high incidence rates for Blacks like prostate, colorectal, and lung cancers, it is imperative to explore the root reasons for why Black participation in clinical trials remains so low. The study was conducted through Pfizer and with the Arthur Ashe Institute for Urban Health, a community-based nonprofit organization founded in 1992 by tennis champion and humanitarian Arthur Ashe. The Institute, located in multiethnic Brooklyn at SUNY Downstate Medical Center, utilizes a Community Health Empowerment Model, and works on health education and training with the community. This study utilized a convenience sample of 14 participants recruited in our partner barber shops and hair salons, as the Institute conducts CBPR in nontraditional settings. The participants were broken into three focus groups: men, women, and the Institute's Health and Beauty Council, which consists of barbers and stylists with whom the Institute partners for training and education. The results were tabulated by gender (9 women and 5 men) to explore the issue of low participation. Reasons differed by gender; however, some main themes were a lack of knowledge, fear of addiction, medical mistrust, patient-provider relationships, health literacy as a barrier, cultural health practices, and how to reach a targeted audience for participation. To provide a snapshot of the group, 64% had never participated in a clinical trial, 86% were between 18-60, 93% had health insurance, 33% had an associate's degree or higher, and 71% of annual household incomes were below $31,000. Central Brooklyn is an area in dire need of continuous research in health care. Disparities are pronounced given the mix of income neighborhoods and significant populations of African American, Caribbean, and Latino populations. The borough is crippled with chronic conditions such as asthma, COPD, cardiovascular conditions, diabetes, HIV, and cancers. In addition, there are a large number of immigrants, many undocumented, with barriers to health care. Year after year, in NYC's Community Health Profile of Central Brooklyn, in comparison to 41 other NYC neighborhoods, Central Brooklyn ranks below average (bottom 10) in the areas of general health, maternal and child health, infectious diseases (influenza, HIV/AIDS), chronic diseases (heart disease, diabetes, lung disease), prevention in doctors' offices (cancer screening and immunizations), and access to medical care. The participants had lower levels of income, education, and marriage (social support) rates, yet the qualitative approach captured their knowledge and sentiments towards participating in clinical trials. The results can severely impact future approaches towards increasing Black participation in clinical trials and can help tailor a more culturally aware approach to diversifying clinical trial participation.

Citation Format: Cicely K. Johnson. Barriers to African American participation in clinical trials: A qualitative study of Central Brooklyn residents [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A040.