This webpage was prepared to aid Tribal leaders and community participants in the upcoming 2019 National Institutes of Health (NIH) Tribal Consultations on the All of Us Research Program:
- HHS Regional Consultation on June 18 from 2:30-5:00 p.m. in Sacramento, California
- NCAI Mid Year Conference and Marketplace on June 24 at 1:30-5:00 p.m. in Sparks, Nevada
- HHS Regional Consultation on July 16 from 2:30-5:00 p.m. in Washington, DC
- HHS Regional Consultation on August 21 from 2:30-5:00 p.m. in Denver, Colorado
On June 3 from 3:00-4:00 pm ET, NCAI hosted a Webinar in conjunction with All of Us to provide Tribal leaders and members with background on the program and on the Tribal Collaboration Working Group report that informs this process. See recording of NCAI Webinar. In addition, listening sessions are being scheduled at events across the country; the most up-to-date list of events may be found at the All of Us Tribal Engagement webpage. Read more about NIH's and All of Us missions.
Background Work for Tribal Consultation
In preparation for engaging American Indian and Alaska Native (AI/AN) peoples in the All of Us Research Program, staff conducted an informal literature review to understand the issues related to research involving AI/AN individuals. Program staff also spoke with Tribal leaders and researchers to gather input and feedback and to build relationships, attended and spoke at the NIH Tribal Advisory Committee (TAC) meetings, and presented at events organized by Tribal organizations. The All of Us team also conferred with U.S. Department of Health and Human Services (HHS) and NIH colleagues who are experienced in engaging with Tribal Nations. The University of Arizona, an All of Us Research Program consortium health care provider organization, organized a conference to engage with Tribal Nations in their region, which was attended by program leadership.
Many of the individuals and organizations the team engaged with recommended for the program to form an advisory group to give thorough input on the inclusion of AI/AN individuals in All of Us, which led the program to establish the Tribal Collaboration Working Group (TCWG) of the All of Us Research Program’s Advisory Panel. With input from a team of NIH and external advisors, the program identified Tribal leaders, providers, researchers, and other community members to invite to serve on the working group. The program was careful to seek a diverse group in terms of geographic representation, size of tribes, area of expertise, etc.
In October 2017, All of Us Research Program director Eric Dishman charged this working group with providing guidance to All of Us senior leadership and specifically to describe:
- Strategies for collaborating with Tribal Nations, clinics, and organizations to enable AI/AN participation in the program.
- Unique considerations, such as Tribal sovereignty, cultural beliefs and traditions, and historical trauma, that the program should be aware of as they seek to engage Tribal populations.
- Potential modifications that could be made to current All of Us Research Program protocol to facilitate AI/AN participation in the program.
- Ethical, legal, and social issues that should be considered prior to enrollment of AI/AN individuals.
- Major research questions which might be of interest or return value to Tribal Nations and AI/AN individuals.
The TCWG completed their report in April 2018. The report was published to the All of Us Research Program’s website and is intended to serve as a resource for this Tribal consultation.
Consultation and Listening Sessions Goals and Suggested Questions
During this consultation, the NIH seeks to understand how the All of Us Research Program can develop meaningful, culturally sensitive collaborations with Tribal Nations and communities. The information presented at the consultation will be used by the NIH and All of Us senior leadership to identify priorities and opportunities around the inclusion of AI/AN populations in the research program.
- The All of Us Research Program recognizes there are many unique considerations when partnering with Tribal Nations, including Tribal sovereignty, cultural beliefs and traditions, and historical trauma. What are the associated challenges and best practices for biomedical research initiatives?
- The TCWG report outlines many points for the All of Us Research Program to consider around collaboration with Tribal Nations and communities. Are there specific points in the report that you strongly support or that you disagree with?
- How should All of Us collaborate with Tribal Nations, clinics, and organizations to receive permission to recruit members of their communities into the All of Us Research Program? What initial pilot partnerships should the program consider?
- What guidance do Tribal Nations have for All of Us to deal with individuals that enroll independently and who self-identify as AI/AN?
- What are the major research questions that are of most interest to your nation or community?
- How may All of Us help advance research conducted by members of Tribal Nations?
1. This amount reflects the sum of discretionary budget authority of $36,238 million received by NIH in FY 2018 under The Consolidated Appropriations Act of 2018, Public Law (P.L.) 115-141, $923 million derived from PHS Evaluation financing, and mandatory budget authority of $150 million for special type 1 diabetes research authorized per P.L. 115-123 and P.L. 114-10. Details regarding current appropriations are available from the Office of Budget.
View All of Us Tribal Engagement Page