Understanding “Engagement” in the All of Us Research Program
Principal Investigators: Carolyn Neuhaus, The Hastings Center; Johanna T. Crane, Albany Medical College
Funder: National Human Genome Research Institute, National Institutes of Health
This project is examining the recruitment and retention of participants for the National Institutes of Health’s All of Us Research Program, an unprecedented initiative to collect genetic and other health-related data from at least one million people living in the United States with the ultimate goal of identifying ways to provide individualized care.
Part of what makes All of Us unprecedented is its commitment to enrolling 75 percent of its research cohort from groups that historically have been underrepresented in biomedical research, including Latinos and African Americans. Underrepresentation in research contributes to racial and ethnic health disparities in America, and yet All of Us may facilitate the development of targeted therapies or other interventions that reduce health disparities. Still, some individuals from underrepresented groups are hesitant to enroll in biomedical research.
This study is conducting interviews and observations at one All of Us research site—a federally qualified health center in New York State that serves a primarily Latino and African American patient population. The study seeks to understand:
- What motivates individuals to enroll or not enroll in All of Us, and why people do or don’t continue participating over time
- How interviewees understand the commitment of All of Us to engaging research participants as partners.
Overall, the project aims to contribute to advancing diverse participation in precision medicine research by identifying novel strategies for meaningfully engaging underrepresented populations in health research in ways that match their values and expectations.
A supplement to this project is looking at Barriers to Caring for Patients with Genetic Findings that Require Medical Attention.