Abstract B140: Towards cancer health justice: Considerations in designing a US cohort of 100,000 Black women
Authors: McCullough Lauren E. , Teras Lauren R. , Deka Anusila , Kirkland Elizabeth G. , McCray Jeshondria , Vins Holly , Bontemps-Jones Jeuneviette E. , Patel Alpa V. 
Published: December 2023

Background. Racism is a fundamental driver of health inequities, perpetuating systemic disadvantages that disproportionately impact marginalized communities. Structural racism affects multiple domains of an individual’s life, including housing, education, health, and employment. Recent studies have leveraged census data to examine the impact of racism—typically captured using area-level factors such as residential racial segregation and neighborhood socioeconomics—on health outcomes, including cancer. However, these studies often fail to capture the complex multidimensional mechanisms by which structural racism uniquely impacts minoritized groups and seldom consider facilitators of resilience, which may better inform interventions. Purpose. Large-scale contemporary cohort studies are needed to understand the drivers of social determinants of health and their potential impact on cancer. The American Cancer Society (ACS) has committed to establishing a US cohort of at least 100,000 Black women to understand multi-level drivers of cancer development and outcomes. Approach. ACS investigators have implemented a culturally sensitive approach that recognizes and validates the experiences of Black women, actively centering them in the design process. Relying on the principles of accountability, rigor, transparency, and impact to guide decision making, the research team has addressed novel challenges around eligibility, recruitment, and retention. ACS investigators considered the mechanisms and frequency of engagement to ensure meaningful participation. They designed survey tools to assess known drivers of cancer and non-cancer outcomes but reflect an understanding of the interconnected systems of oppression that uniquely impact marginalized communities. The research team has also taken steps to address expectations around the collection of biospecimens, recognizing the importance of establishing trust and respecting individual choice. Outcomes. The study population will be comprised of Black women between the ages of 25 and 55 years who reside in the District of Columbia or one of 20 US states. The ACS will partner with organizations primarily representing or serving the target population to identify interested participants. Study activities will be conducted through an online portal optimized for mobile use. Through the portal, interested individuals will complete an electronic eligibility survey, review the informed consent, and complete the 60-minute baseline survey. Follow-up questionnaires will be sent to participants twice per year for at least 30 years to track exposure and health outcomes and their lived experiences. Enrollment will take place in two pilot markets in Fall 2023 to test the feasibility of the recruitment, e-consent, and e-surveys with anticipated full-scale launch and biospecimen substudy in 2024. Conclusions. In designing a cohort of 100,000 Black women, ACS investigators aim to amplify the VOICES of Black women—honoring their lived experience and strengthening partnerships in the community for long-term health improvements. 

Citation Format: Lauren E. McCullough, Lauren R. Teras, Anusila Deka, Elizabeth G. Kirkland, Jeshondria McCray, Holly Vins, Jeuneviette E. Bontemps-Jones, Alpa V. Patel. Towards cancer health justice: Considerations in designing a US cohort of 100,000 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 B140.