A recent report by the Alaska Beacon highlights the ongoing struggle of Native American tribes to gain access to their own health data, a critical step towards achieving health sovereignty. The article, authored by Nada Hassanein, details how tribes have been historically excluded from accessing health data collected by federal and state agencies, hindering their ability to address health disparities within their communities.
Stephanie Russo Carroll, an associate professor of public health at the University of Arizona and a citizen of the Native Village of Kluti-Kaah, has been at the forefront of this fight. Carroll co-founded the U.S. Indigenous Data Sovereignty Network and emphasizes the importance of data access for tribes to develop effective health programs and policies. “Without access to our own data, we cannot fully understand or address the health issues affecting our communities,” Carroll stated.
The lack of access to health data has significant implications for Native American communities, which face higher rates of chronic diseases, mental health issues, and other health disparities compared to the general population. By gaining control over their health data, tribes can better identify and address these disparities, ultimately improving health outcomes for their members.
Efforts to secure data sovereignty are gaining momentum, with tribes advocating for legislative changes and partnerships with academic institutions to ensure they have the tools and resources needed to manage their health data effectively. This movement is seen as a crucial step towards empowering Native American communities and promoting health equity.
See: “Tribes, long shut out from their own health data, fight for access and sovereignty” (March 28, 2025)