Abstract B055: Engaging Black and African American community members to develop culturally appropriate methods for cancer genetics education, risk assessment, and referral to research studies and clinical services: A community café approach

• Published in: Cancer epidemiology, biomarkers & prevention Vol. 33; no. 9_Supplement; p. B055
• Main Authors: Linnenbringer, Erin, Wilson, Briana, Wallace, Kayla, Kunavarapu, Anjali, Cogshell, Charles, Martin-Giacalone, Bailey, Muthukrishnan, Meera, Maricque, Brett, Mozersky, Jessica, Drake, Bettina, Balls-Berry, Joyce
• Format: Journal Article
• Language: English
• Published: 21.09.2024
• DOI: 10.1158/1538-7755.DISP24-B055
• ISSN: 1538-7755

Abstract Background: Patients who have a potentially hereditary cancer (e.g., breast, ovarian, prostate) and self-identify as Black or African American (AA) are less likely to receive cancer genetic services than their White peers. Prior research indicates that the lack of consistent identification and referral of test-eligible patients and their family members is a significant barrier to receiving this care. Additionally, AA patients who do reach these services are much more likely than White patients to receive genetic test results that contain a variant of unknown significance (VUS). This disparity is largely attributable to the lower proportion of non-White patients included in cancer genetic research and clinically derived datasets. Developing culturally appropriate, community-informed, and community-based approaches to improve access to cancer genetic research and clinical care is critical to reducing these disparities. Methods: We used a community and patient engaged research (CPER) framework to develop and implement a series of community cafés. The foundation of the community café model is bi-directional engagement that emphasizes the critical roles of cultural awareness, empathy, and trust in healthcare and research improvement. Accordingly, we developed two brief educational modules that oriented café participants to the topics of 1) genetics and diversity in cancer research and 2) the role of family history in cancer risk assessment. Each ∼10 minute module was followed by a 30-40 minute facilitated listening session, enabling café participants to provide substantial feedback on both topics. Sessions were structured to generate input on the development of training and practice support materials for community health workers (CHWs) in the next phase of this research project. Note takers summarized the discussion at the end of each session, providing café participants an opportunity to revise or elaborate upon the written notes. Café sessions were also audio recorded for future transcription. Results: Eight community cafes were held from January-May 2024. Six cafes consisted of 121 AA community members (75.8% female; mean age = 53.4 years), most of whom had either been diagnosed with cancer (29.8%) or had a first-degree relative with cancer (31.4%). Two cafes enrolled a total of 21 CHWs (90.5% female; mean age = 45.4 years). Several actionable themes emerged during the listening sessions, including: clear explanations regarding why AA patients are being recruited into cancer genetic research studies, acknowledging harms of past race-based research; increased awareness of CHWs and how they can help build trust and bridge gaps between community members and academic medical centers. Café participants strongly endorsed increased presence of clinicians and researchers in community settings and increased representation of Black or African Americans on clinical and research teams. Impact: The community café approach was well received by community members, generating important input into the development of a community-based, equity-focused intervention. Citation Format: Erin Linnenbringer, Briana Wilson, Kayla Wallace, Anjali Kunavarapu, Charles Cogshell, Bailey Martin-Giacalone, Meera Muthukrishnan, Brett Maricque, Jessica Mozersky, Bettina Drake, Joyce Balls-Berry. Engaging Black and African American community members to develop culturally appropriate methods for cancer genetics education, risk assessment, and referral to research studies and clinical services: A community café approach [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B055.