Empowering Equitable Data Sharing for Tribes

The National Indian Health Board (NIHB) has identified three key policy areas for advancing health equity for American Indians and Alaska Natives with the help of data. 

The NIHB hosted its first-ever Tribal Health Equity Data Symposium over two days in September at American University in Washington, D.C. 

During the symposium, the NIHB addressed (1) measuring health equity considering tribal sovereignty, strengths and Indigenous identities (2) promising practices for improving how to collect data about race and ethnicity and (3) challenges and opportunities in tribal access to data held by federal and state agencies. 

HIMSS is an avid partner in NIHB’s efforts to further enhance tribal community engagement opportunities. 

Presentations from recognized data stewards illuminated the long-unmet representation in tribal data collection, showing how data could efficiently flow accurately and bidirectionally within tribal populations.  

Speakers also emphasized that data collection and analysis practices must honor both tribal sovereignty and Indigenous knowledge. 

During the symposium, attendees discussed the importance of establishing appropriate privacy and consent protections to advance tribal health data sharing. Each tribe is unique, with a wide variety of cultural differences and sensitivities that set each tribe’s data collection needs apart from the other 574 federally recognized tribes.  

Stakeholders recommended that federal regulators conduct tribal consultations with each tribe to create an agreed-upon data exchange governance to establish data access for individual tribal nations.  

The goal of tribal consultations is to have an individualized approach for each sovereign tribe that ensures the data collection is being properly respected, collected and accounted for. This ensures tribes have timely and precise data to improve their community health and wellness while having direct input in the way their tribal data is collected.