Operationalising Indigenous Data Sovereignty through an Indigenous-governed Health Information System for Community Partners. — The Association Specialists
  1. Schedule
  2. Oral Presentations - Indigenous and community-led and governed data collection, measurement and reporting
  3. Operationalising Indigenous Data Sovereignty through an Indigenous-governed Health Information System for Community Partners.

Operationalising Indigenous Data Sovereignty through an Indigenous-governed Health Information System for Community Partners. (23734)

Koorinya Moreton 1 , Ray Lovett 1 , Chris McKay 1 , Ben Harrap 1
  1. Australian National Unviversity, Acton, ACT, Australia

Background

There have been growing calls to decolonise the field of epidemiology, including health information systems. This work develops an Indigenous-governed health information system which uphold the rights of Indigenous peoples to exercise control and ownership over their data. We present the development of a health information system, built on principles of Indigenous Data Sovereignty and implemented through the Mayi Kuwayu Study, a national longitudinal study examining Aboriginal and Torres Strait Islander wellbeing.

Methods

Co-Designed Science Research (C-DSR) was used to determine health information system requirements, through facilitated engagement with Indigenous community partners and individuals to ensure that community priorities, research interests, and culturally relevant indicators inform the design of data collection, analysis, and reporting processes.

Using C-DSR, user-personas (semi-fictitious representations of real-life system users) were developed and tested through a user journey map (process for users to engage with the system). User-personas included an Indigenous research participant and an Indigenous community organisation that uses aggregate research data for monitoring local community priorities, each vetted by community stakeholders in an iterative way after each development period. The personas were presented in community workshops for feedback on language, structure and usability, which informed the initial development of the platform.

Pilot testing will use summative usability testing methods.

Results

A prototype of the digital data platform was developed based on community stakeholder input and tested with gammon (‘dummy’) data, with the proof-of-concept phase now complete. Next, the platform will be piloted with community partners and study participants to assess the platform’s accessibility, usability, and acceptability. Pilot findings will inform further refinement of the platform before launching.

Conclusion

This work demonstrates how the development of Indigenous-governed health information systems can shift power back to Aboriginal and Torres Strait Islander communities, moving from extractive models toward community-controlled, which will enable community-led data-driven narratives through purpose-built systems.