Professor JT Hughes1
1Flinders University, Casuarina, Australia
Biography:
Bio to come
Background:
Research value is important to Aboriginal and Torres Strait Islander people, who as data owners seek kidney health. Indigenous Data Governance enables the eGFR Study data custodians and research reporting team to uphold research value.
Aim:
To describe the way Indigenous Data Governance is enacted in design and delivery of a long-term kidney health cohort study of Australian Aboriginal and Torres Strait Islander adults.
Method:
eGFR3 Study protocol, invites informed participant consent to engage in their third kidney health clinical research assessment and access to data for linkage. Survival and any kidney function change since baseline (2007-2011) will be contextualised by health-related access pattens, using data-linkage. The eGFR3 Study Aboriginal and Torres Strait Islander Community Governance Group (eGFR3-ATSICGG) and research governance group (established in 2020 and 2007 respectively) govern research practice.
Results:
Inclusion of social determinant data for linkage. The eGFR3-ATSICGG, with members from participant regions across Australia, assess and authorise a community-lens of research value within research-technical instruments and process and advocacy to state and national data sources. Annual workshops (NT, Qld and WA during 2020-2024) enhance in-depth knowledge exchange, shared understanding, and enables decisions that support study progress, ensuring Indigenous governance of eGFR data.
The research-interface respects Aboriginal and Torres Strait Islander people’s rights and extent of participation in the eGFR3 Study. The eGFR3ATSICGG added value to the survey instrument with social determinant data for linkages
Conclusion:
The governance context of eGFR3 Study foregrounds major outcomes reporting in 2026-2027. Community-control in research data governance, and preparation to receive research findings, provides value in research findings, and regional kidney-health actioning from across community, clinical and research sector of WA, Qld and NT.