In fall 2020, the NIH National Center for Advancing Translational Sciences (NCATS) formally launched the National COVID Cohort Collaborative (N3C) in response to the urgent need for access to clinical information to help researchers study the COVID‑19 pandemic. As part of efforts to understand whether and how to make American Indian and Alaska Native (AI/AN) data held within the N3C accessible to researchers, NIH initiated formal Tribal Consultation and shared a recorded informational webinar in December 2021 and convened a 1-hour virtual Tribal Consultation and Urban Confer on February 11, 2022. NCATS released its Tribal Consultation Report in July 2022, summarizing the input received from Tribal leaders and the Center’s responses.
The N3C data platform and environment may provide a mechanism for gaining a better understanding of how COVID-19 is impacting local and regional communities. Having consulted with Tribal leaders, NCATS intends to remove additional privacy measures placed on AI/AN data in the N3C so that the benefits of the data can be realized for individuals identified as AI/AN.
Based on feedback from Tribal Consultation, NCATS will take the following steps to make AI/AN data available for research through its standard Data Use Request process:
- AI/AN data will be moved back to a stand-alone category. With this change, AI/AN data will be available in any N3C analysis that provides race and ethnicity distribution.
- ZIP codes that overlap with Tribal communities will be available for research in the following manner:
- ZIP codes for all geographic units containing 20,000 or fewer people will be removed entirely. This is standard practice for all geographic units and will be applied the same way when AI/AN data are restored to a separate category.
- Currently, specific ZIP codes representing rural populations predominantly with AI/AN-identifying individuals are hidden. These will now be visible in both the limited dataset and de-identified data. This means that AI/AN data will be managed as others are managed with the exception that the full five-digit ZIP codes are never shown.
- The N3C Data User Code of Conduct will be modified so that data users will be asked to attest that they understand the N3C contains no Tribal affiliation data and that use of AI/AN data and ZIP code information to make assumptions about Tribal affiliation is not valid or appropriate. This statement will be included as a reminder when a data use request is received, a data use agreement is executed, and data are accessed in the N3C platform and during publication processes.
- The N3C will continue to engage THRO and Tribal Nations as issues for discussion arise.
Read the Tribal Consultation Report.