National Disability Data Asset

Our challenge

Tackling lack of information on experiences of people with disability

Very few administrative data collections identify people with disability, unless the relevant administrative program requires this information to be collected to administer supports or services to registered participants (for example, the National Disability Insurance Scheme).

Therefore, people with disability are only identifiable in a very limited number of data sets – generally those directly related to disability or welfare supports and programs. This in turn constrains the usefulness of single-source administrative data to understand the experience of people with disability in using mainstream services. There is also limited information available for effectively informing policy and programs, and measuring outcomes for people with disability.

Our response

Building a data-sharing resource

Data linkage can improve the utility and value of existing data sets. Linking data from 2 or more sources creates a rich source of information that provides much more detailed insights than are possible from a single source.

The Australian Government and most state and territory governments are working together to develop the NDDA. The AIHW is working with NDDA partners, including an NDDA Disability Advisory Council, to implement an 18-month NDDA pilot phase. The pilot comprises 5 test cases that focus on high-priority public policy research projects: early childhood; justice; education to employment; mental health and psychosocial disability; and how linked administrative data can support an outcomes framework under the new National Disability Strategy. This large-scale data-sharing and integration project brings together de-identified data from 51 Australian, state and territory government data sets.

The pilot has built on the AIHW’s multisource health and welfare data expertise and leveraged existing data integration and management infrastructure to develop and capture previously unavailable information on people with disability. In collaboration with NDDA partners, the AIHW has now designed and built a NDDA linkage map and created linked analysis data sets for each of the test cases. The AIHW is also providing subject matter expertise and analytical support for 2 of these test cases.

Our results

Enhanced understanding of service pathways and outcomes

Early insights from the pilot have demonstrated, for the first time at this breadth and scale, how linked data can identify a range of people with disability using mainstream services. Research findings from the test cases will be available in late 2021. Insights from the pilot phase will inform options for an enduring asset, including priority data for inclusion, data integration models, approved uses of the NDDA and asset governance models.