Daisy Le1, Hanna Ozbeki2, Stefanie Salazar3, Madison Berl4, Monique Mitchell Turner5, Olga Acosta Price6. 1. The George Washington University, School of Nursing, 1919 Pennsylvania Avenue NW, Suite 500, Washington DC, 20006 USA. Electronic address: daisyle@gwu.edu. 2. The George Washington University Milken Institute School of Public Health, 950 New Hampshire Avenue NW #2, Washington, DC 20052 USA. Electronic address: hozbeki@gwu.edu. 3. The George Washington University Computational Biology Institute, 22nd Street NW, SEH Office 7000, Washington DC, 20052 USA. Electronic address: salazar.projects21@gmail.com. 4. Children's National Hospital, 111 Michigan Avenue NW, Washington, DC 20010 USA. Electronic address: mberl@childrensnational.org. 5. Michigan State University Department of Communication, 404 Wilson Road, Room 473B, East Lansing, MI, 48823 USA. Electronic address: mmturner@msu.edu. 6. The George Washington University Milken Institute School of Public Health, 950 New Hampshire Avenue NW, Suite 300, Washington DC, 20037 USA. Electronic address: oaprice@gwu.edu.
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.
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.
Authors: Lauren M Hamel; Louis A Penner; Terrance L Albrecht; Elisabeth Heath; Clement K Gwede; Susan Eggly Journal: Cancer Control Date: 2016-10 Impact factor: 3.302
Authors: LaPrincess C Brewer; Sharonne N Hayes; Monica W Parker; Joyce E Balls-Berry; Michele Y Halyard; Vivian W Pinn; Carmen Radecki Breitkopf Journal: J Womens Health (Larchmt) Date: 2014-07-21 Impact factor: 2.681
Authors: Yolanda R Smith; Angela M Johnson; Lisa A Newman; Ardeth Greene; Timothy R B Johnson; Juliet L Rogers Journal: J Womens Health (Larchmt) Date: 2007-04 Impact factor: 2.681
Authors: Lindsey Haynes-Maslow; Paul Godley; Lisa Dimartino; Brandolyn White; Janice Odom; Alan Richmond; William Carpenter Journal: Cancer Med Date: 2014-06-06 Impact factor: 4.452
Authors: Brandy M Mapes; Christopher S Foster; Sheila V Kusnoor; Marcia I Epelbaum; Mona AuYoung; Gwynne Jenkins; Maria Lopez-Class; Dara Richardson-Heron; Ahmed Elmi; Karl Surkan; Robert M Cronin; Consuelo H Wilkins; Eliseo J Pérez-Stable; Eric Dishman; Joshua C Denny; Joni L Rutter Journal: PLoS One Date: 2020-07-01 Impact factor: 3.240
Authors: Jennifer Cunningham-Erves; Sheila V Kusnoor; Victoria Villalta-Gil; Sarah C Stallings; Jabari S Ichimura; Tiffany L Israel; Paul A Harris; Consuelo H Wilkins Journal: BMC Med Res Methodol Date: 2022-09-24 Impact factor: 4.612