Overview of timeline of the National Disability Data Asset Pilot
In late 2019, Disability Reform and Data and Digital Ministers agreed to establish a National Disability Data Asset to help:
- solve the problem of poor-quality data about people with disability and
- gain a better understanding of how people with disability are supported by all levels of government and agencies
- a Council
- disability-informed ethical oversight
- a Charter that contained acceptable and unacceptable uses of the data and
- ongoing community engagement.
In April 2020, the Pilot phase of the National Disability Data Asset began and ran for 18 months. The Pilot phase tested ways to share data safely and aimed to help maintain and build trust with people with disability.
The Pilot phase finished in December 2021. The Pilot phase delivered 5 projects, and made recommendations about how data could be shared and governed. This included that the National Disability Data Asset would be co-governed by governments and the wider disability community through:
Key findings of the Pilot phase are available on the Pilot phase and findings page.
Pilot Advisory Council
The Pilot phase was guided by the Pilot Disability Advisory Council, which was chaired by Dr Ben Gauntlett, the former Disability Discrimination Commissioner. The Pilot Disability Advisory Council included people with disability, members of the disability community and disability researchers and experts.
The members of the Pilot Disability Advisory Council were:
- Dr Ben Gauntlett
- Dr Scott Avery
- Professor Bruce Bonyhady AM
- Professor Gemma Carey
- Belinda Drew
- Damian Griffis
- Professor Anne Kavanagh
- Professor Gwynnyth Llewellyn
- Mary Mallet
- Catherine McAlpine
- Dr Steven McEachern
- Mary Sayers
- Kevin Stone
- Professor Julian Trollor
- Leah Van Poppel
- John Walsh AM
Overview of timeline of the establishment of the National Disability Data Asset
Disability Ministers agreed in early 2022 to the general design of the National Disability Data Asset.
Ministers also agreed that the first areas of focus would be:
- Reporting under Australia’s Disability Strategy Outcomes Framework
- Health outcomes for people with disability
- Employment outcomes for people with disability.
In November 2023, Disability Ministers endorsed the first members of the Council. For more information about the members of the Council please visit the Council page.
The Council met for the first time in February 2024 and discussed their ways of operating and the draft Charter. More information about the outcomes from each Council meeting can be found on the News and Updates page.
Disability Ministers met in June 2024 and endorsed the Charter and the Council’s Terms of Reference.
The first release of the National Disability Data Asset is expected from the second half of December 2024. This means that applications for research projects can be accepted.