In response to the urgent need for clinical information presented by the COVID‑19 pandemic, NCATS and its partners developed the National COVID Cohort Collaborative (N3C) to collect clinical, laboratory and diagnostic data from hospitals and clinics and to make data accessible to researchers seeking to understand COVID‑19.

Through N3C, NCATS has made data accessible to more than 3,000 researchers and clinicians to study the progression of COVID‑19, identify risk and protective factors, search for effective treatments, understand the long-term disease effects, and determine how best to care for those with the disease.

When the N3C opened for data collection and use, NCATS put additional privacy measures in place for American Indian and Alaska Native (AI/AN) data and ZIP codes associated with Tribal lands.

A Tribal Consultation was held on Feb. 11, 2022, to solicit input and recommendations on whether and how to appropriately make AI/AN data available to Tribal researchers and to the broader scientific research community.

NCATS released its Tribal Consultation Report (PDF-1.3MB) in July 2022, summarizing the input received from Tribal Leaders and the Center’s responses.

As of September 2022, AI/AN data are available for COVID-19 research in the N3C Data Enclave, in accordance with the key outcomes and responses described in the Tribal Consultation Response and Report.

Tribal Data Enclave Framework

Pre-Event Materials

• Dear Tribal Leader Framing Letter
• Framing Letter 

Key Outcomes

The N3C data platform and environment 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 the feedback from Tribal Consultation, NCATS will take the following steps to make AI/AN data available for research through its standard Data Use Request (DUR) process:

1. AI/AN data will be moved back to a standalone category. With this change, AI/AN data will be available in any N3C analysis that provides race and ethnicity distribution.
2. ZIP codes that overlap with Tribal communities will be available for research in the following manner:
   1. ZIP codes for all geographic units containing 20,000 or fewer people are 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.
      1. For example, if a ZIP code of “01234” represents a community of 20,000 or fewer individuals, the user will see a ZIP code of “00000.”
   2. Currently, specific ZIP codes representing rural populations predominantly with AI/AN-identifying individuals are hidden. These will now be visible in both the limited data set 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.
      1. For example, if a ZIP code of “01234” represents a predominantly AI/AN community, the user will see only a partial ZIP code of “012.”
3. 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 DUR is received, a Data Use Agreement is executed, and data are accessed in the N3C platform and during publication processes.
4. The N3C will continue to engage NIH’s Tribal Health Research Office and Tribal Nations as issues for discussion arise.