
Privacy and the National Disability Data Asset
The National Disability Data Asset will bring together de-identified information from different government agencies about people with disability. This will help us to better understand the experiences of people with disability.
The Department of Social Services is working with the Australian Bureau of Statistics (ABS) and the Australian Institute of Health and Welfare (AIHW) to create the National Disability Data Asset. States and territories and the disability community are also involved in creating the asset and deciding how it can be used.
How we will keep information safe
Protecting people’s privacy and keeping their information safe is our highest priority.
We will de-identify all data in the disability data asset. This means we will remove personal information, such as names and addresses, to make sure no one will be able to find out who people are or contact them.
The ABS and AIHW have experience managing many important Australian Government data collections. They will make sure the asset:
- protects privacy
- keeps data secure in line with the Australian Government Data Sharing Principles (based on the Five Safes Framework)
- meets legal requirements
- can only be accessed by authorised people.
We will also complete a Privacy Impact Assessment to make sure:
- the asset is in line with privacy laws, including the Privacy Act 1988
- the asset considers other things that may affect privacy, including any risks
- the community accepts the way the information will be used.
An independent privacy expert will complete this assessment in 2023.
Accessing, changing or removing your information
You won’t be able access, change or remove information about yourself from the National Disability Data Asset. This is because we remove personal information, including names and addresses, from the data.
The disability data asset will connect information from multiple Australian, state and territory government sources. You can apply to access or change your information with the agency that originally collected it.
Where we will store the data
We will store data in:
- the Australian National Data Integration Infrastructure – this is the technical system that supports the disability data asset
- state and territory systems that we approve to link or analyse the data.
We will work to make sure these systems are safe and secure before they store any data.
How we manage privacy of the National Disability Data Asset Pilot data
The asset went through 2 years of development and testing called the Pilot. The Pilot looked at the best ways to share, link and access information.
We have stored all de-identified data from the Pilot in secure computer systems with strict controls over access.
The lead state or territory or Australian Government agency will need to approve any future access and research into this Pilot data. They will also need to make sure this research is in line with relevant laws, including the Privacy Act 1988.
Using the separation principle to protect data
We will use the separation principle to protect data in the National Disability Data Asset. This means that we keep personal information like names and addresses separate from analytical data, such as employment status.
The separation principle is a way to protect the identities of people and organisations when people are:
- handling data
- linking information – for example, if an authorised person brings together health and education data about someone.
The authorised people who do the work to combine the sets of data for the asset will access some personal information. But that information isn’t in the data we make available to researchers.
The approved researchers will only have access to de-identified analytical data in line with the Australian Government Data Sharing Principles.
No one working with the data can see or use both personal and analytical information at the same time.
Visit the ABS website for more information on the separation principle and keeping data safe.
The Protective Security Policy Framework
The Australian Government has a security framework called the Protective Security Policy Framework. This is a set of guidelines to protect people, information and resources.
The National Disability Data Asset will follow this framework to:
- make sure it’s clear who is accountable for managing security risks, data breaches and reporting
- manage who can access information
- allow authorised people to access information when they need to
- make sure users have the skills and relevant checks to use data appropriately
- provide a safe and secure physical environment for people, information and resources.
By applying this framework, the asset will achieve best practice in security of privacy and data security.
Learn more
You can find more information about the National Disability Data Asset at www.ndda.gov.au.
You can also email questions about the privacy of the asset to ndda@abs.gov.au.