Indigenous people's perspectives on sharing health data for service delivery purposes: an inquiry using Indigenous methodologies.

Abstract

With healthcare's accelerating digital transformation and expanding data-sharing capabilities, it is essential to uphold Indigenous Data Sovereignty (IDSov)-which affirms Indigenous ownership and authority over health data relating to Indigenous communities. Indigenous Data Governance (IDGov) provides the mechanisms through which IDSov is enacted, ensuring Indigenous Peoples lead decisions about how data are collected, accessed, and used. Our research investigates a local enactment of IDGov, discussing how custodial stewardship is enacted in data-sharing arrangements between an Aboriginal and Torres Strait Islander community-controlled health organisation and a government birthing facility. The research aimed to understand Aboriginal and Torres Strait Islander service users' and health workers' perspectives on how/whether to share data between services. Led by a community-controlled organisation, the study used Indigenous methodologies, including 'yarning'-a traditional knowledge-sharing practice. An Aboriginal researcher conducted yarns with Aboriginal and/or Torres Strait Islander staff and perinatal service users. Collaborative analysis was undertaken using an adapted 'Thought Ritual', an Indigenous analytical framework. Analysis identified four domains: 1) Power and Control in Data Sharing-Data sharing can shift power dynamics, affecting sovereignty and community control, 2) Safety Concerns-Participants cited legal, cultural, and psychosocial risks tied to stigma and systemic racism, 3) Ability to Do My Job-Limited data access can hinder effective service delivery, and 4) Not Everything Should Be Shared-There is a clear preference for consent-based, selective data sharing. Honouring Indigenous perspectives in data-sharing arrangements is an ethical obligation. In perinatal settings, upholding custodial stewardship helps safeguard sovereignty, safety, and equitable outcomes. Funding was received from the Australian Government through the Medical Research Future Fund.