FAQ

The National Disability Data Asset will help improve the lives and outcomes of people with disability in Australia. It will provide more information about the outcomes, experiences and needs of people with disability by linking de-identified information. This information will help improve programs and services.

When complete, the National Disability Data Asset will be used to:

• Provide a more complete picture of the programs and services used by people with disability
• Help governments improve these programs and services
• Share information about how opportunities and outcomes could be improved
• Improve reporting on outcomes for people with disability under Australia’s Disability Strategy 2021 – 2031.

Benefits for people with disability, their families, and carers

The disability data asset could improve how people with disability interact with governments and service providers. The disability data asset could be used to support people with disability to understand the benefits of different services and supports. This could help improve how people with disability take part in the community.

Benefits for organisations that serve people with disability

The disability data asset could produce insights that will help service providers and other members of the community. This improved information available at a community level is expected to assist service providers in their planning for services and supports. 

Benefits for researchers

Researchers would be able to use the disability data asset to better understand the life experiences of people with disability. They will be able to share information about how we can improve opportunities and outcomes for people with disability. 

Benefits for governments

The disability data asset could help improve governments’ ability to target services and supports for people with disability. This new way of linking de-identified information will show what supports and services are improving outcomes for people with disability. The disability data asset will also help the government measure outcomes for Australia’s Disability Strategy 2021 – 2031.

The Australian Government has been working with people with disability and the wider disability community to design the National Disability Data Asset to ensure the project remains aligned with the community’s expectations. This has involved targeted engagement and consultation with Disability Representative Organisations and key stakeholders from the disability community about:  

• privacy 
• ethical oversight arrangements  
• co-governance arrangements including the Council and the Charter 
• datasets for inclusion
• data products and insights  
• approach to knowledge sharing  
• disability indicators 
• panels that would provide support to the Council. 

Yes. People with disability, disability and data experts, and governments will jointly govern the National Disability Data Asset with the creation of the National Disability Data Asset Council (Council). The Council will provide recommendations on the strategic direction of the disability data asset to the Disability Reform Ministerial Council (DRMC).

The Council can also appoint time-limited panels. These panels would provide support to the Council and could consist of people with disability and disability and data experts. If agreed to by the Council, panel members would have the opportunity to help shape the work of the National Disability Data Asset.

The use of the National Disability Data Asset will be guided by a Charter with rules and principles that explain how it should be managed. A draft Charter was written by a group of experts that guided the Pilot called the Pilot Disability Advisory Council. The draft Charter outlines the ways the National Disability Data Asset can be used as well as the ways it cannot be used. The purpose of the Charter is to make sure people with disability and the wider disability community are aware of and comfortable with the use of data. Disability Representative Organisations and other key disability stakeholders helped finalise the Charter.

The Australian Government have been working with states and territories, people with disability and the wider disability community to design and deliver the National Disability Data Asset. This includes finalising work on the design of project governance, secure systems and initial data to support the National Disability Data Asset. The government has also been carefully assessing privacy impacts and ethics processes before data is shared.

In June 2023, all states and territories signed up at a Memorandum of Understanding for the National Disability Data Asset. This includes agreement to supply data and to the co-governance of the disability data asset with people with disability and the wider disability community through the National Disability Data Asset Council, Charter and ethical oversight arrangements.

The National Disability Data Asset Council and the Charter are expected to be in place in the first half of 2024 following final approval by the Disability Reform Ministerial Council.

The first results from the National Disability Data Asset will be available in 2024. The disability data asset is expected to be fully operational in 2026.

The Australian Bureau of Statistics and the Australian Institute of Health and Welfare are working together to build the underlying infrastructure for the National Disability Data Asset. This underlying infrastructure is called the Australian National Data Integration Infrastructure. It is being designed to ensure data protection and security and to maintain people’s privacy.

The Australian National Data Integration Infrastructure refers to the national linkage and integration technical infrastructure. This includes a national spine and linkage model. It also includes data governance and streamlined data sharing arrangements that enable the creation of the data asset. ANDII also refers to an ICT solution, supported by linkage and analytical capabilities. The ANDII ICT solution is being built in the cloud which provides opportunities for enhanced security, scalability and controlled data sharing. It will provide contemporary tools for data preparation, analysis and code management. It will also support reuse of data as well as more ad-hoc or once off data analytic tasks.

When complete, the Australian National Data Integration Infrastructure will:

• Link datasets from across Australia in a more efficient, secure and streamlined way
• Make sure that information is safe and secure and privacy is maintained
• Leverage the Data Availability and Transparency Act scheme by utilising the framework for oversight, data sharing and transparency.

The Australian Government considers it critical that all data, including for the National Disability Data Asset is safeguarded and the privacy of individuals is protected. The Australian Government is prioritising the protection of privacy and data security at all stages. This includes designing governance, secure systems and processes to securely deliver and manage the disability data asset.

The disability data asset will be protected by secure systems to ensure only authorised people will be able to access data. Data is shared, accessed and used in line with the Australian Government Data Sharing Principles (based on the Five Safes Framework).

Privacy and ethical oversight arrangements are in place, including the 2023 Privacy Impact Assessment and 2024 Australian Institute of Health and Welfare Ethics Committee approval. All data will be handled in accordance with the Australian Privacy Act 1988.

The disability data asset does not contain any personal information. The disability data asset will not be able to be used to identify individuals. This means the government cannot intervene in the life of a specific individual or family in any way.
More about privacy is at Privacy for the National Disability Data Asset.

Yes. A Privacy Impact Assessment (or PIA) for the National Disability Data Asset and the Australian National Data Integration Infrastructure was completed by independent privacy experts in 2023. A PIA is a review of a project and how it might affect privacy. A PIA suggests ways to manage, reduce or remove privacy risks and impacts. A continual PIA process will occur throughout the project as it evolves, with an update to the PIA planned to occur in 2025.

Accessible versions of the privacy materials are available at Privacy for the National Disability Data Asset.

No. The asset will connect existing information about people with disability from different government agencies. The data asset will hold de-identified data that will make sure no individual can be identified from the information in this asset.

The National Disability Data Asset will connect information from multiple existing Australian, state and territory government sources.

You can apply to access or correct your information held by the agency which originally collected it; however it will not be possible to correct, remove or provide access to your information in the National Disability Data Asset itself.

Information used for analysis will be de-identified.  Personal information such as names and addresses will be removed prior to analysis. The National Disability Data Asset will not be used to identify individuals. It will be used to look at patterns and trends for cohorts and groups of people.

No data has been shared for the creation of the National Disability Data Asset at this time.

The data will be held in the Australian National Data Integration Infrastructure and in state and territory linkage and analytics environments. Access requests will be managed by the Australian Bureau of Statistics and the Australian Institute of Health and Welfare.

The National Disability Data Asset went through a testing period called the Pilot phase. The Pilot phase ran for 18 months and finished at the end of 2021. The Pilot examined the best ways to share, link and access information. The Pilot focused on housing, justice, early childhood, education to employment and mental illness and psychological distress. Each test case had different aims and questions. The test cases gave us a better understanding of people with disability and how services and supports can influence their health and welfare which we could not see before conducting the test cases. For example, one in five people with disability live on their own. The test cases showed how we could design a disability data asset that linked information from across the Australian Government and the states and territories.

The Pilot findings have been published and can be viewed on the Test Cases page of the National Disability Data Asset website ndda.gov.au.

The Australian Government, including the:

• The Department of the Prime Minister and Cabinet
• The Department of Social Services, and;
• The National Disability Insurance Agency

State and territory governments of:

• New South Wales (NSW)
• Victoria
• Queensland
• South Australia
• Australian Capital Territory (ACT)

The Pilot was led by a national Project Team from the NSW Department of Premier and Cabinet. The Australian Institute of Health and Welfare was the technical lead.

The National Disability Data Asset Disability Advisory Council were a group of experts that guided the Pilot. Chaired by Australia’s Disability Discrimination Commissioner, Dr Ben Gauntlett. This Council also engaged with people with disability and the wider disability community about the National Disability Data Asset while they provided guidance to the Pilot.

More information about the National Disability Data Asset Disability Advisory Council can be found at ndda.gov.au.

The National Data Disability Asset Pilot placed a very high importance on safeguarding data and protecting privacy.

Data used for the Pilot is held in a secure computing environment by accredited government data custodians with strict access controls. The data used for research is de-identified, without names or other identifying information. Any future use of the test case de-identified data will only be allowed with a valid approval. The research would need to be consistent with approved uses and legislation, including the Privacy Act 1988. This would also need to be approved by the lead state or territory or Australian Government agency. 

Privacy will continue to be a key priority for the enduring National Data Disability Asset.