Tribes, long shut out from their own health data, fight for access and sovereignty

When Stephanie Russo Carroll, a citizen of the Native Village of Kluti-Kaah in Alaska, set out to earn her doctorate in tribal health 15 years ago, she focused her research on tribal cultural and health programs within six tribes.

She needed vital statistics data, such as birth and death rates, for each of them. But getting that data from the state, which houses vital statistics, was difficult — and in some cases, the data she needed was missing.

“Health outcomes data were unobtainable,” Carroll recalled. In one case, her team had to try using breastfeeding rates as a proxy to estimate birth rates. But even getting those for all six tribes was impossible.

For the next two decades, Carroll would continue to push for U.S. tribes — which are sovereign nations — to own and maintain control over their data, including health statistics.

The concept, known as data sovereignty, is important amid the harrowing health disparities seen in tribal people, rooted in forced assimilation dating back more than a century. Often, data gathered by and about tribes has been shared with state and federal agencies; but those same agencies haven’t always shared their tribal-related statistics in return.

The reasons vary, from systemic issues within the health care system to mistaken assumptions by some federal officials about what data be securely sent to tribes without risking privacy violations.

https://stateline.org/2025/03/27/tribes-long-shut-out-from-their-own-health-data-fight-for-access-and-sovereignty/