Caleigh Curley
The Arizona Department of Health Services (ADHS), in partnership with the University of Arizona’s Native Nations Institute (NNI), the Collaboratory for Indigenous Data Governance, and Arizona Tribes, is developing the state’s first Indigenous Data Sovereignty (IDSov) Policy. This initiative aims to honor Tribal sovereignty, safeguard Tribal data, reconnect Tribes with their data and improve health outcomes for Indigenous communities. Foundational steps included in-person visits and leadership meetings with Tribal governments to strengthen partnerships and respond to requests for reliable data. ADHS also established an internal Tribal Data Sharing Workgroup, co-created a Tribal Data Sharing Agreement with a Tribe, hired a Tribal Health Epidemiologist to liaise with Tribes, and partnered with NNI and the Collaboratory to provide expertise in IDSov and relational governance. Building on this groundwork, a two-day democratic deliberation in August 2024 convened six Tribes to co-develop policy principles and priorities. The participant-led, facilitator-guided process created a safe space for Tribes to articulate values, define governance needs, and build consensus free from external influence. This approach reflects a transformative sovereign-to-sovereign partnership model, aligning state health data systems with Indigenous governance values and the CARE Principles. Input from the first and additional deliberations informed the first IDSov Policy draft. ADHS and NNI then hosted a webinar to engage all 22 federally recognized Arizona Tribes in reviewing the draft. For those unable to attend, the draft was distributed with a two-week comment period. Feedback was collaboratively incorporated with NNI and the Collaboratory. The finalized policy is anticipated for implementation in 2026.