Beyond Access: Reclaiming Data Sovereignty to Strengthen Public Health Outcomes

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Authors: Katlin T. Wilson, Alec J. Calac, Samuel Kohn
Cited by: 0

Abstract

Abstract: Public health data are the foundation of responsible governance, shaping decisions about funding, policy, and disease surveillance and prevention. Yet, for American Indian and Alaska Native (AI/AN) communities, public health systems have often underreported the true burden of disease on tribal lands leading to chronic underinvestment in workforce and infrastructure. These data gaps promote invisibility of AI/AN health disparities and delay timely intervention for emerging public health issues as well as hamper surveillance of communicable diseases and toxic exposures, including syphilis, human immunodeficiency virus, and heavy metal contamination in groundwater. This Commentary examines how structural, methodological, and sovereignty-based inequities limit access to equitable public health data for AI/AN communities. We first trace the colonial legacy of data extraction and development of the nation’s public health infrastructure, then describe how racial misclassification and underinvestment worsens AI/AN health disparities. We close by challenging the nation’s public health leaders to operationalize Indigenous Data Sovereignty through the recognition of tribal public health authority and use of the CARE Principles for Indigenous Data Governance.

Fields of Study & Subjects

Indigenous Health Education and Rights Indigenous Cultures and History Indigenous Peoples' Rights and Law

Publication details

Journal / source
Zenodo (CERN European Organization for Nuclear Research)
Publication date
4 February 2026