Arizona Department of Health Services Pursues Policies to Advance Data Sharing with Tribal Nations
July 22, 2024 | Erik Skinner, Christina Severin, Reema Mistry
With leadership support and funding to modernize its public health infrastructure, the Arizona Department of Health Services (ADHS) is pursuing policies to advance data sharing with tribal nations. This includes investing in partnerships with tribal leaders, educating the public health workforce about tribal governments and tribal health care, and working to improve data identification processes to support effective data sharing between the state and tribal nations. Data sovereignty is an important consideration for ADHS, as there are 22 federally recognized tribal nations in Arizona. ADHS recognizes the inherent right of tribal nations to access their citizens’ public health data and is developing a tribal data sovereignty policy that both acknowledges their unique data needs and aligns with state requirements around tribal engagement.
Leadership Support and Effective Tribal Engagement
ADHS leadership understands the importance of making strong connections with tribal nations and recognizing each nation’s public health priorities while meeting its statutory requirement to develop tribal consultation policies. To that end, ADHS developed the tribal liaison position to serve as a resource, advocate, and communication link between ADHS and Arizona’s Native American health care community partners, including tribal community leaders, health and epidemiology directors, Indian Health Service (IHS), and Tribal Epidemiology Centers (TECs). Understanding cultural norms is essential to building trust with tribal partners; the tribal liaison role has been vital to ADHS engagement with tribal nations on data sovereignty topics.
People and processes are important to establishing data sharing policies, and a well-informed workforce is essential for effective collaboration with sovereign tribal nations. ADHS is working with the Native Nation Institute to provide training on tribal sovereignty and cultural humility for staff. It has also developed a tribal handbook for public health staff on sovereignty, cultural trauma, and the roles of IHS and TECs.
Identifying Tribal Affiliation within Datasets and Tribal Public Health Priorities
ADHS conducted a data assessment to identify instances in which data sharing was active and ongoing between ADHS and tribal nations, and instances in which it had expired. A notable technical challenge was identifying tribal members within existing datasets, as many public health datasets are incomplete (e.g., do not include tribal affiliation) or rely on IT systems that are unable to aggregate data appropriately—making it difficult to ensure tribal authorities receive relevant, comprehensive public health data for their communities.
In addition, because each tribal nation’s public health priority areas and data needs could differ from the data that state health information systems collect, sharing relevant data with tribal nations can be challenging. ADHS is working with each nation to identify tribal public health priority areas, find solutions to identify tribal data within state collected datasets, and share it with the respective nations.
"All tribes are very different, so [it’s important] not to lump or treat them the same or give them the same template every time. You really just have to listen. Listen and learn.”
– Ken Komatsu, State Epidemiologist, ADHS
Honoring Sovereignty in Data Sharing Relationships
Data sharing agreements with public health agencies often establish that the state agency controls the disposition and use of the data, and that each party benefits. Acknowledging that tribal partners are entitled to their citizens’ data without conditions differs from how ADHS has historically approached data-sharing relationships with others. ADHS plans to formally establish a non-transactional data sharing policy with tribal public health partners, and establish data sharing agreements that align with this approach going forward.
Implementation Considerations
Considerations for state health agencies in fostering strong relationships and effective engagement with tribal partners around data-sharing efforts include:
- Center tribal sovereignty when framing data sharing agreements with tribal nations.
- Engage tribal liaisons in data-sharing efforts with tribal nations. They maintain close relationships with tribes and can help develop mutual cultural understanding, which is essential to engaging tribal partners.
- Assess datasets to determine data completeness with regards to tribal affiliation and identify opportunities to improve comprehensive data sharing with tribal authorities.
- Invest in state health agency staff training on tribal sovereignty and cultural humility, so staff can be well-prepared when engaging in data sharing conversations with tribal partners.
“Their [tribal] views of how they see the world [are] very different—from the western versus indigenous world views… Someone being quiet doesn't mean that they're not listening. Questions won't happen until after. And also providing any type of information ahead of time would be very helpful.”
– Gerilene Haskon, Tribal Liaison, ADHS
This publication was supported by the Strengthening Public Health Systems and Services Through National Partnerships to Improve and Protect the Nation’s Health OT18-1802 Cooperative Agreement, funded by the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.