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'No data about us without us': community responses to the idea of a National Disability Data Asset

Data availability Self-determination Disability People with disability Data access Databases Australia

Data is increasingly used to direct services, secure funding and influence policy. However, for the disability community in Australia, access to high quality data is significantly lacking.

This report captures the perspectives of 40 members of the disability community to the idea of a National Disability Data Asset (NDDA) in Australia.

The NDDA is an ambitious initiative involving federal, state and territory governments that aims to better understand the experiences of people with disability. It intends to do this by linking de-identified data across a range of domains including education, health, justice and employment. Further data collected by communities, researchers and service providers is intended to be linked in later phases.

The Sydney Policy Lab's interviews and workshops identified participants’ hopes that the NDDA will improve the quality and availability of data about people with disability, and that this improved data will be used to create positive change for people with disability.

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