Ginossar, Tamar

Abstract Introduction: Tribal Nations across the Southwest have striking disparities in cancer incidence and mortality. Compounded by disproportionately low rates of cancer screening and limited access to healthcare, Native Americans are more often diagnosed at later stages of disease and have the poorest outcomes in all types of cancer when compared to any other racial and ethnic group in the United States. At the University of New Mexico Comprehensive Cancer Center, the Participant Engagement Cancer Genomic Sequencing (PE-CGS) Center is developing culturally appropriate materials and strategies to enhance the engagement and recruitment of Native Americans into genomic research. This effort aims to determine participant knowledges, attitudes, cultural beliefs, and communication preferences regarding clinical genomics testing. Ultimately, targeting improvement of cancer outcomes in Southwestern Tribal communities. Cultural adaptations are crucial with regards to biospecimen collection, storage, and usage, due to historical mistrust of research among Native communities. (i.e., Havasupai Tribe v. the Arizona Board of Regents). A Tribal Advisory Committee, consisting of Tribal leaders, Native physicians, and patient advocates oversee all aspects of the research study. The goal is to identify appropriate optimized health literacy strategies for engaging Native peoples in cancer genomic research. Methods: The team conducted semi-structured discussions with participants to understand their perspectives on motivations to join, cultural safety components, and effectiveness of engagement strategies. With participant consent, the discussions were recorded and transcribed. Analysis included the transcripts and notes taken by the interviewer and followed Grounded Theory principles. All transcripts and notes followed line-by-line analysis by three of the authors (JS, JR and TG) who met regularly to identify and discuss emergent themes. Results: As of May 31, 2024, the PE-CGS study has enrolled 112 participants and completed 39 discussions. Participants emphasized altruistic motives tied to family and community, echoing traditional values, in their decision to participate in the study. This notion emerged during interactions with Native team members, where comfort stemmed from shared experiences (healthcare system, barriers), use of Native language, and adherence to Native social norms. Additional considerations included present autonomy throughout various stages of the study (sample use, data sharing, discussions). Return of genetic testing results improved understanding of treatment options, hereditary risk, and health literacy. Conclusion: Feedback highlights the importance of aligning cultural beliefs with Western medicine through a strengths-based approach. The findings will inform improvements in respectful engagement, communication, information exchange, and recruitment processes with Native American cancer patients and cancer survivors to genomic testing studies. Citation Format: Jessica Sanchez, Koby Blackwater, Joseph Rodman, Tamar Ginossar, Andrew Sussman, Shiraz Mishra, Cindy Blair, Mallery Quetawki, Debra MacKenzie, V. Shane Pankratz, Ursa Brown-Glaberman, Jeffery Trent, Cheryl Willman. Journey to understanding indigenous peoples engagement in cancer genomic research [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 A084.

Abstract Introduction: The Patient Engagement-Cancer Genome Sequencing Research Center (PE-CGS; NCI U2C CA252973) based at the University of New Mexico Comprehensive Cancer Center (UNMCCC) with partners at Mayo Clinic Comprehensive Cancer Center, the Translational Genomics Research Institute, and the Black Hills for American Indian Health Research Center are developing culturally appropriate strategies and methods to address the underrepresentation of American Indians (AIs) in genomic research. Our efforts are directed towards the implementation of tailored cancer prevention, diagnosis, and treatment strategies that reduce cancer health disparities in Tribal communities. Methods: The PE-CGS Center has three units, each tasked with specific research components to engage AI participants in participatory, clinically-meaningful genomic research: 1) the Participant Engagement Unit; 2) the Genomics Characterization Unit; and 3) the Engagement Optimization Unit (EOU). The Center also has a Tribal Advisory Committee, composed of Tribal Governors, Presidents, and tribal health advocates and experts, who provide direction on all research matters. The PE-CGS EOU uses iterative rapid-cycle research techniques to optimize engagement and shares these strategies with other units for timely implementation. To date, the EOU has developed and implemented three key efforts. First, to aid in recruiting participants for the study, the EOU tailored a series (6) of participant-facing informational materials that include artwork from a local AI artist who combined her traditional and scientific knowledge to prepare complementary imagery. Second, the EOU is currently implementing a series of semi-structured discussions to document participant perceptions on criteria including engagement, communication, and education. Lastly, the EOU implemented a survey among UNMCCC providers on their return of results processes. Results: EOU discussions are ongoing and have provided important perspectives on participant satisfaction and areas for improvement. Participants have commended study staff on their efforts to make enrollment straightforward. Participants report discussing the study with family prior to enrolling, highlighting the importance of continuing to engage with the entire community on the goals of the study. The provider return of results survey is complete (n=42/62, response rate=68%); one key finding was that providers who return somatic test results rarely provide participants with a hard copy of the results or utilize complementary materials that might enhance their explanation of the test findings. Conclusion: The EOU serves an innovative function through its rapid-cycle methods to optimize participant engagement. Although participants are generally pleased with their study participation, there are numerous opportunities for improvement. The informational materials represent a novel contribution to the field of genomic research. Efforts will continue to implement optimized processes for effective engagement of AI communities in genomic research and cancer care delivery. Citation Format: Shoshana Adler Jaffe, Kendal Jacobson, Joseph Rodman, Cindy Blair, Debra MacKenzie, Mallery Quetawki, Tamar Ginossar, V. Shane Pankratz, Andrew Sussman, Ursa Brown-Glabermen, Jeffrey Trent, Cheryl Willman, Shiraz I. Mishra. The art of science: Painting a new image of genomic research in the indigenous communities of the Southwest [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 B134.