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

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 methodologies, IPHCC engaged member organizations, community representatives, and health system partners to co-design a governance model for data access and interoperability. Case examples include the creation of Indigenous Health Information Partnerships, culturally grounded data-sharing agreements, and pilot digital tools reflecting Indigenous health priorities.

 

Results:Findings: reveal that Indigenous-led data frameworks enhance data quality, trust, and transparency. Communities report greater confidence in data sharing when control and consent mechanisms are embedded. Collaborative data systems enable better coordination of care and population-level insights while respecting sovereignty principles. System partners have adopted elements of the IPHCC framework to inform provincial policy and practice.

 

Conclusions: Indigenous Data Sovereignty offers a transformative foundation for ethical digital integration. This presentation highlights practical strategies to balance interoperability with autonomy, ensuring integrated care systems are built on mutual respect and accountability. Participants will gain insight into governance tools, policy enablers, and pathways for implementing culturally grounded digital integration across health sectors.

Keywords: Indigenous Data Sovereignty, OCAP®, digital health, governance, ethical integration, community control