In October 2017, the All of Us Research Program Advisory Panel established a working group to provide guidance to All of Us senior leadership on how to develop meaningful, culturally sensitive collaborations with American Indian and Alaska Native (AI/AN) populations. The Tribal Collaboration Working Group (TCWG) has now completed its report, outlining best practices and considerations for collaborating with tribal nations and populations.
“AI/AN populations demonstrate many cultural strengths and are highly resilient, but they also experience a multitude of health disparities relative to other population groups,” wrote the report authors. “These health disparities represent a loss of individual and societal potential that could be reduced through inclusion in research. Unfortunately, AI/AN individuals have been severely underrepresented in clinical trials and often are not included in sufficient numbers in national research studies. A research program on the scale of All of Us, with its focus on environmental and lifestyle factors in addition to biological makeup, could be of potential benefit to tribal nations and individuals.”
The report PDF | 429.04 KB outlines several overarching principles for engagement with tribal communities, including respect for tribal sovereignty, acknowledgement of historical transgressions, importance of engagement with Urban Indian leaders, and need for continued bi-directional engagement. Additionally, the report focuses on four specific areas:
- Tribal sovereignty and consent
- Ethics, including institutional review boards, biospecimen storage and access, and protection and benefits
- Engagement and partnerships
The TCWG was comprised of two co-chairs and 14 members, including tribal leaders, providers, researchers, community members, and All of Us Research Program representatives. The group was diverse in terms of geographic representation, size of tribes, and area of expertise.
The All of Us Research Program has invited several tribal organizations and their members to provide input on the TCWG report. The program is also working to plan Consultation with tribal nations later this year. The information and options presented by the TCWG, along with additional input that will be collected from Consultation, will be reviewed by the All of Us consortium and may lead to changes to the program’s protocol or policies.
“We have always been committed to including American Indian and Alaska Native communities in All of Us and I’m grateful to the tribal leaders and researchers who have so generously shared their expertise through this report,” said Eric Dishman, director of the All of Us Research Program. “This is a great beginning for respectful, bi-directional engagement between All of Us and tribal communities and I look forward to receiving additional input from tribal leaders through Consultation.”
Read the report PDF | 429.04 KB.