Actioning Indigenous Data Sovereignty: Aboriginal and Torres Strait Islander consent and data sharing priorities to guide community-controlled health service best practice 

Aboriginal and Torres Strait Islander people have the right to access culturally safe information and health and wellbeing services to empower their participation in informed decision-making about their own lives. This is crucial for digital inclusion and Indigenous self-determination. Our people also have the right for their private and sensitive health information to be used, stored, and shared between Aboriginal and Torres Strait Islander community controlled health services (ATSICCHS) and Federal and/or state and territory government health departments, and other government departments and agencies, on their terms. 

However, the limited literature confirms lack of investigation into Aboriginal and Torres Strait Islander people’s expectations about consent, data use, and health service data sharing practices, especially decolonised consent processes and practices embedded in Indigenous Data Sovereignty principles. This project will seek to address these challenges. 

‘Our vision is for our people to live long, healthy, prosperous and happy lives.’

‘This is how we’ve always done it – holds no power in the realm of possibilities.’