All of Us Tribal Leader and Urban Indian Organization Letter

May 24, 2019

Dear Tribal Leader and Urban Indian Organization Leader:

In accordance with the HHS Tribal Consultation Policy, the National Institutes of Health (NIH) is announcing a series of Tribal Consultation and Listening Sessions on the All of Us Research Program.

The All of Us Research Program, part of NIH, was established to accelerate health research and medical breakthroughs to enable an era of precision medicine for all. Precision medicine is an approach to disease treatment and prevention that seeks to maximize effectiveness by taking into account individual variability in environment, lifestyle, and biological makeup. With the great promise this program represents for strategically addressing health challenges, it is our intent to respectfully engage with Tribal Nations to facilitate the inclusion of American Indian and Alaska Native (AI/AN) populations in this program.

NIH will take part in several upcoming 2019 HHS Regional Consultations to discuss the All of Us Research Program in-person with Tribal leaders: June 18 from 2:30-5:00 p.m. in Sacramento, California; July 16 from 2:30-5:00 p.m. in Washington, D.C.; and August 21 from 2:30-5:00 p.m. in Denver, Colorado. We also encourage you to participate in an upcoming special in-person consultation event on June 24, 2019, at the Nugget Casino and Resort in Sparks, Nevada, preceding the National Congress of American Indians’ 2019 Mid-Year Conference and Marketplace. Mr. Eric Dishman, Director of the All of Us Research Program, Dr. Aaron Payment, Chairperson of the Sault Ste. Marie Tribe of Chippewa Indians and Chair of the NIH Tribal Advisory Committee, and other NIH and All of Us leadership will be in attendance to listen and substantively incorporate your input. If you and your designee(s) are unable to participate in these in-person sessions, and/or if you prefer to comment in writing, we welcome written testimony submitted to AoUTribal@nih.gov by August 31, 2019.

In addition to the four consultations above, the program also invites you to join listening sessions throughout the summer, starting with the United South and Eastern Tribes (USET) Semi Annual Meeting on June 18 at 10:00 a.m. in Nashville, Tennessee. Additional opportunities to participate in listening sessions will be posted on the All of Us Tribal Engagement website as details become available. We welcome you to subscribe to our listserv to receive email updates on agendas, new listening sessions, and other information relevant to Tribal Nations (please use the “Subscribe” button found on our website).

These consultations are in direct response to advice we have received to explore and discuss ways the All of Us Research Program can develop meaningful, culturally appropriate collaborations with AI/AN populations. The goal for these events is to facilitate information exchange and provide an opportunity for Tribal and Urban Indian Organization leadership to have meaningful input as All of Us identifies priorities and opportunities around the inclusion of AI/AN populations in the research program while also implementing the appropriate protections to comply with tribal research oversight and laws.

To help assist with your preparation for this consultation, All of Us is offering the following resources:

• Tribal Collaboration Working Group Report “Considerations for Meaningful Collaboration with Tribal Populations”
• Informational webinar about the All of Us Research Program: the 60-minute webinar, which will include an overview and Q&A session, will be hosted on June 3, 2019 from 3:00-4:00 p.m. (ET) and will be available for on-demand viewing after the event. These and additional resources are available at the All of Us Research Program’s Tribal Consultation webpage.

We look forward to participating, listening, and learning from each of you. If you have additional questions about this event, please contact the All of Us Research Program Tribal Engagement team by calling or texting (240) 515-5317 or by email at AoUTribal@nih.gov.

Sincerely yours,

Francis S. Collins, M.D., Ph.D. Director