Abstract PO-022: Exploring knowledge and perceptions of cancer care and clinical trials in the local Black community to develop culturally-tailored interventions
Authors: Shore Kelsey , Strom Carla , Weaver Kathryn , Falk Derek , Winkfield Karen 
Published: December 2020

Introduction: In Forsyth County, North Carolina, 52% of Black residents live in three zip codes—27101, 27105, and 27107—that comprise East/South East Winston- Salem. Cancer incidence and mortality are significantly higher in Forsyth County when compared with the US average (11.2% and 30.7%, respectively). Given the harmful history of systemic anti-Black racism in the region, including forced segregation and eugenics, we sought to hear directly from stakeholders to better understand the knowledge, attitudes, beliefs, and experiences around cancer care and clinical trials (CTs) amongst Black residents in our catchment area. Methods: We collaborated with a Black-owned research group to implement a qualitative study using racially-concordant facilitators. Key informant interviews (n=14) were held with stakeholders, including health care providers (n=4), patients (n=24), caregivers (n=8), and patient advocates (n=13) in the local Black community; results informed the development of a focus group protocol. Four focus groups were conducted with black residents in Forsyth County including groups of cancer survivors and family members (n=46 participants total). Transcripts were coded using NVivo12 Plus and a code-based report was thematically generated and analyzed by community and academic stakeholders. Results: While many participants endorsed past participation in a CT, little knowledge about the structure and purpose of CTs was evident. None of the participants, including providers, could express that cancer patients enrolled in CTs would never only receive a placebo; cancer patients would always at least be given the standard of care (SOC), or when patients progress through SOC, would possibly be provided with a new therapeutic drug. Participants described cancer CTs as “riskier” because of the seriousness of the disease being treated. They also did not associate non-interventional trials focused on changing health behaviors or patient- reported outcomes with CTs. Barriers to CT participation included mistrust and fear of experimentation; facilitators of participation included personal benefit or benefit to others, monetary incentives, and personalized communication and treatment strategies. Conclusion: Limited patient, caregiver, and stakeholder knowledge about CTs suggested the need for an intervention to address this gap. A population health navigator (PHN) program was created to provide culturally concordant navigation to traditionally underserved patients (Hispanic, Black, rural). The role of the PHN includes educating patients on the importance of CTs and standardizes CT education to help normalize the role of research in cancer care. Based on results of this qualitative study, the PHN program is being adapted to provide culturally tailored education to increase overall CT awareness, knowledge, participation, and adherence among Black patients.

Citation Format: Kelsey Shore, Carla Strom, Kathryn Weaver, Derek Falk, Karen Winkfield. Exploring knowledge and perceptions of cancer care and clinical trials in the local Black community to develop culturally-tailored interventions [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-022.