Abstract PL03-05: Early Engagement Equals Early Detection
Authors: Watson Karriem S. 
Published: April 2023

Introduction: Community Engagement and the All of Us Research Program. Community engagement is a proven and effective tool to enhance participation in research by increasing access and awareness of medical studies. Increasing access and awareness of medical studies with an emphasis on populations who have been historically underrepresented in biomedical research (UBR) has also shown to expand the reach of innovative and novel breakthrough therapies in early detection to improve cancer outcomes. To ensure that advances in early detection improve cancer health inequities for all, early engagement has been demonstrated to be critical. Early and ongoing engagement has been at the core of the National Institutes of Health (NIH) All of Us Research Program. All of Us adheres to the community engagement principles of information-sharing, consultation, involvement and collaboration in decision-making, and empowered action in informal groups or through formal partnerships. Since its inception in 2015, the overarching goal of the All of Us community engagement strategy has been to create a program that reflects the needs, preferences, and priorities of individuals in the U.S. inclusive of UBR communities. As such, program participants and partners have been involved in all aspects of the program including governance, oversight, design, conduct, dissemination, and evaluation. All of Us has accomplished unprecedented advances in the inclusion of UBR populations by building the largest, most diverse biomedical resource of its kind: 80% of program participants are from UBR communities covering a broad range of age, social, racial, ethnic, cultural, geographical, and health statuses. Additionally, nearly 50% of participants self-identify as racial and ethnic minorities. This inclusion of diverse communities throughout the program moves us closer to achieving health equity in biomedical research and ensuring more precise care for all.

The Role of Early Community Engagement in Mitigating Cancer Disparities. Our ability to have a diverse participant pool is due in large part to intentional and early community engagement efforts together with the creation of an ecosystem built to support community partners. Research shows that community engagement can help mitigate cancer health disparities by increasing communities’ knowledge of the importance of healthy behaviors such as screening, awareness of research, building trust in research, and improving study design and ethics. All of this combined with groundbreaking progress in early cancer detection and available therapies has the potential to transform patient care. Immunotherapy and gene therapy, a better understanding of fertility preservation in cancer treatment, and how artificial intelligence (AI) models can predict patients’ risks of breast cancer are only a few recent and transformative advances that are driving progress against cancer. While these and other advances are promising, many UBR communities have not benefited equally from this progress. Historical, systemic, and structural barriers, such as the digital divide and lack of access to and awareness of clinical trials, are preventing the achievement of equitable advances in precision medicine and cancer research. Early and intentional community engagement efforts must be put in place to ensure that these innovative advances reduce cancer disparities and improve cancer prevention and detection in medically underserved groups. For instance, we must consider the role that "ZNA" (zip code or neighborhood association) or "place and space" has on cancer. We know that ZNA can be just as important in the precision medicine and cancer journey as someone’s DNA. Research has not always been conducted in places where the populations reflect the diversity of the U.S. Most cancer oncology trials and cancer treatment centers may not be accessible to those that carry the greatest burden of disease, which leads to greater disparities. Similarly, researchers play an essential role in community engagement; studies have shown that being engaged by a research team that reflects the diversity of the population being studied leads to greater participation in research, better retention, and adherence to recommendations.

Conclusion: These are only a few reasons why engaging UBR communities in the early phases and throughout the duration of research studies is important to identify the right problems, formulate the appropriate questions, and build mutual trust and transparency. Redefining participants’ roles not as “patients” or “subjects” but as true partners will improve health outcomes and better address health care for all, leading us to a future where precision engagement drives research along with rigorous science and where community engagement ensures equity and inclusion in precision medicine for all.

Objectives: This presentation will (a) describe how early engagement can lead to mitigation of cancer disparities, (b) discuss best practices of early and intentional community engagement, (c) outline the All of Us engagement ecosystem, and (d) explore the future of engagement in building sustainable, cohesive, and equitable communities.

Citation Format: Karriem S. Watson. Early Engagement Equals Early Detection. [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr PL03-05.