UnidosUS, the nation’s largest Latino civil rights and advocacy organization, is mobilizing community-based affiliate organizations in an effort to engage Latinos in one of the largest precision medicine efforts to date.
The National Institutes of Health (NIH) describes the All of Us Research Program as “a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.”
The program launched with a focus on enrolling groups that have been historically underrepresented in biomedical research (UBR). In order to reach these UBR communities, many community-based organizations have gotten involved through a program called the Community and Provider Gateway Initiative, which helps to raise awareness and involvement in All of Us. UnidosUS was engaged as a trusted partner and advocate for Latinos and, in turn, engaged seven community-based affiliate organizations in this important effort.
During the course of their involvement, UnidosUS and their affiliate organizations have engaged more than 5,000 community members through a variety of events, including individual and group charlas (small group or individual chats) facilitated by trusted promotoras de salud or community health workers. Charlas are incredibly effective when engaging with community members due to their intimate design and the ability for promotoras to customize conversations based on the group’s age, medical knowledge, health and wellness goals, and barriers to participation.
Most recently, UnidosUS brought together community-based affiliate organizations and key community influencers at its All of Us National Community Influencer Convening in Washington, D.C. The three-day convening provided an opportunity for leaders in the Latino communities across the country to discuss engagement efforts and the importance of this program in a time of unprecedented political uncertainty for the community.
Organizations represented included:
- Comunidades Unidas
- La Clínica del Pueblo
- KIPP Texas
- Latino Alzheimer’s and Memory Disorders Alliance
- Mexican Coalition for the Empowerment of Youth and Families
- Latino Community Development Agency
- National Association of County and City Health Officials
- Mary’s Center
- San Ysidro Health
UnidosUS focuses on research, policy analysis, and state and national advocacy efforts, as well as in program work in communities nationwide. They partner with a national network of nearly 300 affiliates across the country to serve millions of Latinos in the areas of civic engagement, civil rights and immigration, education, workforce and the economy, health, and housing.
The NIH began development of the All of Us Research Program with its first working group in February 2015, and it launched community engagement and participant enrollment in May 2018. Since its national launch, nearly 200,000 people have completed the initial steps of enrollment. All of Us has also launched a data browser, secured a partnership for data sharing with Fitbit, and continues to find ways to enroll people of all walks of life and maintain long-term partnerships with those who have already enrolled.