Abstract A110: Results of a qualitative feasibility study to inform the design and development of a new longitudinal cancer cohort of Black women
Authors: Bontemps-Jones Jeuneviette E. , McCullough Lauren E. , Teras Lauren R. , Kirkland Elizabeth G. , Patel Alpa V. 
Published: December 2023

Abstract
Black people have the highest death rate and shortest survival of any racial/ethnic group in the United States for most cancers. Despite having lower incidence rates of breast cancer, Black women have a 41% higher mortality rate than White women. Diversity in research is necessary to lay the foundation for public health guidelines and clinical care practices that benefit all individuals, as well as specific groups. Black people have been underrepresented in research and while there have been efforts to increase diversity in research, these efforts have been largely unsuccessful. The purpose of this study was to gain insight into the motivating factors and potential barriers behind Black women’s willingness to participate in research tailored to understanding their health as it relates to cancer. Findings from this feasibility study informed the development and design of a new cancer cohort of Black Women. We conducted a total of 6 focus groups, each having a convenience sample of 6–10 Black women aged 25 to 65 years. These women were recruited through various community venues across geographic regions (n=38 total). Focus groups were conducted using an in-depth, semi-structured discussion guide which included topics such as participant perceptions and experiences with the healthcare system, perspectives on why structural racism and cancer disparities exist, and opportunities in research participation. Focus groups were recorded, transcribed, and key themes were coded separately by two team members. The major themes reported as factors that may facilitate research participation included: the belief that participation would help others and positively impact future generations, recruitment by a trusted messenger, having a research team with a history of research in this community, and the type of institution that sponsors the research. Some potential barriers included lack of knowledge about data and specimen access and use. Based on these findings, the initial design of a new cohort was developed. The cohort framework, including consent forms and data/specimen collection protocols, was then presented to a convenience sample of 10 women aged 25 to 55 years for quality assurance. This group provided assurance that the knowledge gained from the initial 6 focus groups had been appropriately and thoughtfully incorporated into our study design, recruitment strategies and materials, intended data collection tools, and follow-up strategies. This study provides supportive evidence and subsequent confirmation through a second separate group of women, that Black women are willing and motivated to participate in research studies, particularly if the research helps others, is thoughtfully planned out to incorporate their personal and historical perspectives, and engages trusted partners.
Citation Format: Jeuneviette E. Bontemps-Jones, Lauren E. McCullough, Lauren R. Teras, Elizabeth G. Kirkland, Alpa V. Patel. Results of a qualitative feasibility study to inform the design and development of a new longitudinal cancer cohort of Black women [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A110.