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Indigenous people's perspectives on sharing health data for service delivery purposes : An inquiry using Indigenous methodologies
Watego, Kristie Brodhurst-Hill, Morgan Murray, Cherilda Mangoyana, Clare Emery, Alynta Woon, Jayde Williams, Kara Reid, Natasha Engstrom, Teyl Nelson, Carmel
Watego, Kristie
Brodhurst-Hill, Morgan
Murray, Cherilda
Mangoyana, Clare
Emery, Alynta
Woon, Jayde
Williams, Kara
Reid, Natasha
Engstrom, Teyl
Nelson, Carmel
Abstract
Background
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.
Methods
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.
Findings
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.
Interpretation
Honouring Indigenous perspectives in data-sharing arrangements is an ethical obligation. In perinatal settings, upholding custodial stewardship helps safeguard sovereignty, safety, and equitable outcomes.
Keywords
Indigenous, First Nations, digital data sharing, Indigenous methodologies, maternal health, decolonisation, routinely collected health data
Date
2025-11-27
Type
Article
Journal
The Lancet Regional Health - Western Pacific
Book
Volume
65
Issue
Page Range
1-13
Article Number
Article 101753
ACU Department
National School of Nursing, Midwifery and Paramedicine
Faculty of Health Sciences
Faculty of Health Sciences
Collections
Relation URI
Source URL
Event URL
Open Access Status
Gold open access
License
CC BY-NC-ND 4.0 (Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International)
File Access
Notes
© 2025 Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).