All of Us Tribal Engagement
The All of Us Research Program is working to build a participant community that reflects the diversity of the United States, so that all may benefit from future advances in health and medicine. Accordingly, the program strives to engage Tribal Nations to facilitate the inclusion of American Indian and Alaska Native (AI/AN) populations. All of Us recognizes that Tribes are sovereign nations and seeks ongoing input from tribal leaders to further meaningful, culturally sensitive collaborations.
To inform its tribal engagement activities, the program established a Tribal Collaboration Working Group in 2017, consisting of tribal leaders, researchers, IRB members, and community members. The group’s report outlined best practices and considerations for research partnerships with tribal communities.
Subsequently, the program has undertaken additional activities to better understand tribal communities’ perspectives and concerns about participation, working in close coordination with NIH’s Tribal Health Research Office. These activities have included a formal tribal consultation process, a series of listening sessions around the country, conversations at meetings and conferences, a literature review, and a public Request for Information.
Currently, the program is preparing a report following its recent period of tribal consultation, which concluded on November 30, 2019. The report will summarize the comments and questions received during consultation and share plans for addressing the issues raised by tribal leaders.
A: The All of Us Research Program will not actively engage AI/AN tribal members until after finalizing a set of rules around the engagement of these populations, based on plans developed through consultation. Individuals who identify as AI/AN may continue to enroll in the program under their own volition. All of Us will never recruit or allow its awardees to recruit AI/AN members on tribal lands without first obtaining approval from the tribe.
A: No. Information about participants’ tribal affiliation is not accessible to anyone using the research platform. All of Us will not allow researchers to access tribal affiliation without approval from the tribes participating in the study.
A: All of Us is preparing an interim summary, response and implementation paper to summarize the comments received during consultation and share the program’s initial plans for addressing the issues raised. All of Us will seek input from the NIH Tribal Advisory Committee (TAC) prior to the release of this paper. In addition, All of Us is developing plans for in-depth follow-up discussions in 2020 after the interim report is released.
A: The report will be publicly posted on this webpage when finalized. For notifications on the report’s release, please subscribe to the tribal engagement listerv below.
A: You may find more FAQs about the program and participation at https://www.joinallofus.org/en/faq.
California Rural Indian Health Board Listening Session
Location: Washington, DC
Date & Time: May 2, 2019, 1:00-2:00 pm ET
National Congress of American Indians All of Us Research Program Overview Webinar
Date & Time: June 3, 2019, 3:00-4:00 pm ET
United South & Eastern Tribes Listening Session
Location: Nashville, TN
Date & Time: June 18, 2019, 10:00 am CT
Event Details: Agenda pdf | 229.49 KB
HHS Regional Consultation (Region 9)
Location: Sacramento, CA
Date & Time: June 20, 2019, 1:30-2:30 pm PT
Event Details: Agenda
National Congress of American Indians Consultation
Location: Sparks, NV
Date & Time: June 24, 2019, 1:30-5:00 pm PT
Event Details: Video of presentation
HHS Regional Consultation (Region 10)
Location: Spokane, WA
Date & Time: July 11, 2019, 1:30-2:30 pm PT
Event Details: Agenda
Alaska Native Health Board Mega Meeting Listening Session
Location: Anchorage, AK
Date & Time: August 7, 2019
Event Details: Agenda pdf | 230.74 KB
HHS Regional Consultation (Regions 6, 7 and 8)
Location: Denver, CO
Date & Time: August 21, 2019, 2:30-5:00 pm MT
Event Details: Agenda pdf | 81.8 KB
NIH Tribal Advisory Committee (TAC) In-Person Meeting
Location: Fairbanks, AK
Date & Time: August 22, 2019, 1:00-2:00 pm AT
HHS Regional Consultation (Region 3)
Location: Providence Forge, VA
Date & Time: September 18, 2019
Event Details: Agenda pdf | 221.82 KB
Oklahoma Listening Session
Location: CHK Central Boathouse, 732 Riversport Drive, Oklahoma City, OK 73129
Date & Time: October 22, 2019, 1:00-4:00 pm CT
Event Details: Agenda pdf | 76.76 KB
The All of Us Research Program offers the following resources to assist Tribal leaders and community members.
Tribal Collaboration Working Group Report pdf | 429.04 KB
All of Us Tribal Consultation Fact Sheet pdf | 186.9 KB
All of Us Research Program FAQ – long version pdf | 513.39 KB
All of Us Research Program FAQ – one-pager version pdf | 184.35 KB
Subscribe to Our Listserv
Sign up to the All of Us Research Program Tribal Engagement Listserv to be notified of announcements, events, and other important updates. Click the Subscribe button below to be taken to our Listserv webpage, and provide your name and email address. You can unsubscribe from the Listserv at any time. Thank you.
Mobile Phone: (240) 515-5317
Toll-free Line: (833) 715-4631
Mail: All of Us Research Program
6011 Executive Blvd, Suite 214
Rockville, MD 20852