Data Sovereignty and Integrated Care: Building Ethical, Community-Controlled Health Information Systems

Research International Source checked

Source: International Journal of Integrated Care
Published: 11 Sep 2026
Authors: C. Lidstone-Jones

Excerpt from source

Background: Integrated care depends on shared information systems — but for Indigenous communities, data sharing must align with the principles of Ownership, Control, Access, and Possession (OCAP®). Without Indigenous data governance, integration risks reinforcing colonial data practices. The Indigenous Primary Health Care Council (IPHCC) is advancing Indigenous Data Sovereignty frameworks that enable ethical, equitable, and community-led data use. Aim: s/Objectives:To present IPHCC’s work developing culturally safe data governance structures that support integrated care while protecting Indigenous rights to self-determined data ownership. Methods: Using participatory and decolonizing…

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