No Data About Us Without Us

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 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.

The clearest single insight to emerge from the research was that participants’ support for the NDDA was dependent on the meaningful involvement of people with disability in the Asset’s design, governance and operation. 

The research identifies seven requirements of a successful NDDA: 

1. Ensure people with disability are in the lead. 
2. Address the community’s desire for better data. 
3. Develop a user-friendly digital platform to disseminate insights. 
4. Be transparent and rebuild trust with the disability community. 
5. Set up multiple channels for building and maintaining relationships. 
6. Be a model of accessibility, diversity and inclusion. 
7. Advance forms of participatory data stewardship. 
    

The report makes three additional suggestions for analysts, researchers and civil society: 

1. Recognise the diverse strengths and aspirations of people with disability. 
2. If you are doing work for people with disability, it should be done with people with disability. 
3. Prioritise meaningful relationships, even when under pressure to meet rigid deadlines. 

Research team: Emma Calgaro, Juliet Bennett, Sheelagh Daniel-Mayes, Leigh-Anne Hepburn, Kimberlee Weatherall, Libby Young Louise Beehag, Amy Tong and Marc Stears

Research partner: NDDA National Project Team  

For more information about this research, email the Sydney Policy Lab at policy.lab@sydney.edu.au

For more about the National Disability Data Asset visit the NDDA website or email ndda@dss.gov.au.