Arizona Department of Health Services adopts policy of tribal sovereignty over health data

The Arizona Department of Health Services has adopted a policy affirming tribal sovereignty over health data.

University of Arizona Associate Professor of Public Health Stephanie Russo Carroll said it’s an important development in relations between the state and tribes, which are both sovereign entities.

“It is often difficult for tribes to gain access to the data about their own communities that the states hold, and we’ve seen an uptick in the number of data sharing agreements between a tribe and a state government in order to have better access in sharing,” Russo Carroll said.

Historically, Russo Carroll said there have been many instances of states not respecting tribal sovereignty and collecting and publishing data without tribes’ consent.

She noted that during the COVID-19 pandemic, the government of New Mexico put out data by ZIP code showing where infection had spread. Indigenous areas had disproportionately high infection rates.

Hospitals then used that data to determine their treatment of patients, including separating children from their mothers in labor and delivery departments if the mother was coming from a high-risk ZIP code until she could be tested.

That didn’t happen in Arizona.

Russo Carroll said the new DHS policy wasn’t brought about by any particular event or issue.

“It grew out of recognized need by the tribal liaison at the Arizona Department of Health Services and their staff there that they needed to be more responsive to tribal rights and interests around health data in the state,” she said.

DHS noted in their policy explanation that the project began in 2023 and stemmed from conversations with tribal leaders.

“Any Interaction with Tribal Data must occur under agreements co-developed with Tribes that specify purposes, timelines, conditions, and review processes, ensuring that all data access and use happens according to a Tribe's terms,” the policy document states.