The National Disability Data Asset Charter (the Charter) is a document about how the National Disability Data Asset should be used. It contains principles and rules for the National Disability Data Asset.
The principles describe how National Disability Data Asset should work. They aim to make sure the National Disability Data Asset:
- includes people with disability,
- provides benefits to people with disability,
- is transparent and accountable,
- keeps data safe.
The rules list what the National Disability Data Asset can and cannot be used for.
All researchers who use the National Disability Data Asset, including from government, must follow the Charter.
The National Disability Data Asset Council (the Council) oversees how the Charter is put into practice.
Information about this will also be shared on the National Disability Data Asset website.
More information about the Council can be found at www.ndda.gov/au/how-we-work/council on the National Disability Data Asset website.
The Council and Disability Ministers approved the Charter in the first half of 2024. Any changes to the Charter need to be considered by a committee from the disability community. The Council would appoint the committee. Changes also need to pass a human rights assessment before being considered by the Council and Disability Ministers.
The principles of the Charter
There are nine principles in the Charter. These are:
1. Including and empowering people with disability
This principle is about involving people with disability and the wider disability community in decisions about the National Disability Data Asset. People with disability should have a voice in decisions that affect them.
2. Making information available and accessible
This principle is about making information available and accessible to people with disability. This includes sharing information about Council decisions and research that uses the National Disability Data Asset.
3. Making sure the National Disability Data Asset is used properly
This principle is about accountability. There should be independent review to check all principles in the Charter are being followed. This will be decided by the Council and could include direct engagement with people with disability and the wider disability community or an annual human rights audit.
4. Ensure privacy and security of data
This principle is about keeping people’s data private and safe. Data will be managed at all times under proper privacy, security and legal arrangements.
5. Uphold safe conditions of access
This principle is about how people access the data. Data is protected under the Privacy Act 1988 and Data Availability and Transparency Act 2022. The government will only give people access to data in the National Disability Data Asset under strict conditions. If people do not meet these conditions, their access will be removed, and the Council and the government agency who shared the data will be notified.
6. Public sharing of insights
This principle is about sharing research insights with the wider disability community. Insights is another word for the findings and conclusions from a project. Research projects using the National Disability Data Asset must share their insights publicly. They must also share them in accessible formats, including Easy Read and Auslan. Governments will be required to produce insights in community languages.
7. Creating lasting benefits for people with disability
This principle is about the National Disability Data Asset benefitting people with disability. The government will use the National Disability Data Asset to inform policies and programs for people with disability. Insights from the National Disability Data Asset will help people with disability to make informed decisions. People with disability should have a say in the development of research proposals.
8. Provide access to test research findings
This principle is about the ability to check research that used the National Disability Data Asset. Researchers may request access to test other research insights. These projects are subject to the same principles and rules as all other projects.
9. Review data quality for improvement
This principle is about improving data in the National Disability Data Asset over time. Governments will share information about data used and their research methods. Comparing and using data from different sources will identify data gaps and show where improvement is needed.
The rules of the Charter
The National Disability Data Asset can be used for research that:
- improves understanding of the experiences of people with disability, enabling disability informed design of policies, programs and services.
- examines how programs improve outcomes for people with disability.
- measures how international disability standards and human rights frameworks applied in practice in Australia.
- compares the benefits of different services and helps people to understand what services are be right for them.
- supports inclusive communities by sharing insights about people with disability.
- contributes to a better understanding of people with disability, their families, and carers.
The National Disability Data Asset cannot be used:
- to identify people for any purpose.
- to make decisions about an individual’s access to government funding.
- for any purpose that conflicts with a human rights approach or privacy laws.
- in automated decision-making tools for compliance purposes like debt raising.
- to determine funding arrangements between Australian, state and territory governments without agreement from relevant governments.
You can find more information about the National Disability Data Asset at www.ndda.gov.au or by emailing NDDA@dss.gov.au.