Abstract B076: A qualitative exploration of women’s understanding of clinical research and decisions to participate: Improving diversity in clinical research

Abstract

Abstract BACKGROUND: Twenty-nine years since the National Institutes of Health (NIH) Revitalization Act was passed to encourage minority participation in clinical trials (CTs), and yet there remains a deficit of minorities recruited into CT. This induces the idea that Women-of-Color (WoC) (Blacks, Latinas, Native Americans, Asians) are less likely to participate than their Northern/European White (NE/W) counterparts. Using a mixed methods study that included quantitative surveys and qualitative interviews, we dive into understanding how a diverse group of women understand and perceive CT, along with concerns and attitudes towards clinical research. METHOD: The interview script was designed to capture patients’ understanding and concerns of clinical research, reasons for agreeing or declining participation, and facilitators or barriers to participation. The CRAs were trained in establishing rapport with the patient, clearly communicating the questions, and probing for more elaboration of responses. Interviewees and interviewers were matched based on gender and race. A total of four CRAs conducted the interviews – two Asian CRAs interviewed the Asian participants, one Latina CRA interviewed Latinas and White, non-Hispanics, and one African American CRA who interviewed the African American participants. Structured individual interviews were conducted by trained CRAs. The audio-recordings of all interviews were transcribed word for word and reviewed for accuracy. Two independent coders then read and coded each transcript and extracted a set of quotes (phrases or sentences) that reflected the themes. RESULTS: A total of 44 women were accrued between August 2019 and February 2020. The racial/ethnic makeup include the following: 20 Latinas ([White/Hispanic] - one Salvadorian, one half Mexican/half Armenian, and 18 Mexican), 8 Asian (one half Chinese/half Japanese, one Indian, three Chinese, two Vietnamese, one Thai), 8 African American/non-Hispanic, and 8 White/non-Hispanic (two Iranian and 6 European). Age range of women were 27 to 71 years of age. Seventeen women declined participation. CONCLUSION: The in-person interviews highlighted feelings of cultural mistrust among the WoC participants and not in the NE/W participating in the study. The results highlight the influence of cultural mistrust as a barrier and the importance of diversity of the clinical research team in overcoming this barrier, particularly among WoC clinical trial participants. Of course, there is undeniable heterogeneity within the WoC population; each community is influenced by its own historical and present contexts that influence its relationship with the medical system. Approaches to overcome this barrier must address the specific needs of each community. Diversity of the clinical research team and the ability of the team to address culturally relevant beliefs can increase trial diversity. The generalizability, quality, and effectiveness of healthcare treatment requires diverse representation in all clinical trials. Citation Format: Veronica Jones, Noe Chavez, Vanessa M. Robles, Laura Kruper, Lily Lai, Amy Polverini, Lusine Tumyan, Lesley Taylor, James Waisman, Angelica Sanchez, Christine Thai, Tanya Chavez, Nikita Wright. A qualitative exploration of women’s understanding of clinical research and decisions to participate: Improving diversity in clinical research [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B076.