One way the National Disability Data Asset will be co-governed is through the Council. Another way it will be co-governed is through panels of individuals, including people with disability. The panel members have experience and knowledge about disability. Their role is to provide support to the Council on priority areas for the disability data asset.
DSS have been working with Disability Representative Organisations and state and territory officials to seek the Council’s agreement to set up the first three panels. These include a:
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- Disability Indicators Panel
- Disability-informed Ethical Oversight Panel
- Disability Data Development Scoping Panel.
Disability Indicators Panel
The Disability Indicators Panel provides advice about how the disability indicators should and should not be used from a disability and human rights perspective to support appropriate communication of insights. The Panel will support the development of an improvement plan for the disability indicators work.
The Disability Indicators Panel has 5 members and is chaired by Peter Tully.
Peter has a long history of working to uphold the rights of people with disability and has held multiple advocacy and advisory roles. Peter has a strong interest in how data can support government decision-making.
The Disability Indicators Panel met for the first time on 30 April 2024.
Disability-informed Ethical Oversight Panel
The Disability-informed Ethical Oversight Panel (Ethical Oversight Panel) will review project proposals with a disability perspective. The Panel will only recommend projects be approved that do not cause harm to people with disability.
The Panel will develop a framework to guide consistent assessments of project proposals seeking to access data from the National Disability Data Asset.
The Ethical Oversight Panel is made up of 5 members and met for the first time on 9 September 2024.
The Ethical Oversight Panel is chaired by Dr Lisa Stafford.
Lisa is a well-regarded researcher and educator in disability participation, inclusive communities, and transport equity with extensive experience in ethical and inclusive research. Lisa has held many boards and committee positions and is currently an Includability Ambassador with the Australian Human Rights Commission.
Disability Data Development Scoping Panel
The Disability Data Development Scoping Panel (Scoping Panel) will provide the Council with advice on priority data and knowledge gaps that future panels could investigate.
There are 10 members of the Scoping Panel. The Panel met for the first time in early July 2024. Their report is due to Council in late October 2024.
The Scoping Panel is chaired by Clare Gibellini. Clare is a passionate advocate for the inclusion of people with disability in all areas of the community. She currently works in disability policy and research, and holds positions on multiple councils, committees and boards. Clare has a keen interest in developing data, data analysis and application.
You can find more information about the Council by going to Messages from the Council, About the Council, or Panels that support the Council.