Arizona Affirms Tribal Sovereignty Over Health Data with New Policy

Arizona Health Policy Advances Tribal Data Sovereignty

In a significant step toward enhancing the autonomy of tribal nations, the Arizona Department of Health Services has enacted a policy that recognizes tribal sovereignty in matters of health data management.

Stephanie Russo Carroll, an Associate Professor of Public Health at the University of Arizona, highlighted the importance of this policy in improving relations between state and tribal governments, both recognized as 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 explained.

Historically, Russo Carroll noted, there have been numerous cases where state authorities overlooked tribal sovereignty, collecting and disseminating data without obtaining consent from the tribes.

During the COVID-19 pandemic, the state of New Mexico released data by ZIP code, revealing higher infection rates in Indigenous regions. This data was used by hospitals to guide patient treatment decisions, such as separating mothers from their newborns in high-risk areas until testing confirmed their health status. Arizona did not follow this approach.

According to Russo Carroll, the new policy from the Arizona Department of Health Services was not triggered by any specific event but rather emerged from an internal recognition of the need to respect tribal rights regarding health data.

“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.

The initiative, which commenced in 2023, was informed by discussions with tribal leaders. Access the full policy document here.

The policy mandates that any engagement with tribal data must be governed by agreements crafted jointly with the tribes, detailing the purposes, timelines, conditions, and review processes to ensure data access and use adhere to the terms set by the tribes.