Transforming Data with the Disability Community 

Project Lead: A/Prof Adam Berry, Data Science Institute

Year: 2021-2022

State and federal governments spend $18.7 billion annually to deliver National Disability Insurance Scheme services. Yet there has been an enduring dearth of high-quality data and data driven research to effectively support the more than 9,000 disability service providers operating under the Scheme. The 2011 National Disability Strategy stated: “Good data and research are especially necessary... to improve the effectiveness of mainstream systems for people with disability” and yet, come 2018, the review of that Strategy found that it had “not closed data gaps in important areas”. The upshot is that, in the most recent ABS Disability, Ageing and Carers survey, less than half of those people with disability who needed household assistance stated that they were satisfied with the range of services offered. In response to such data paucity, the Council of Australian Governments agreed to establish a National Disability Data Asset (NDDA), which “bring[s] together, for the first time, deidentified Commonwealth and services data, NDIS data, and service system data from states and territories.” A pilot version of the NDDA is nearing completion, with a focus on justice, education, employment and mental health. But there does not yet exist a program of work that will uplift that asset and the surrounding ecosystem of social inclusion and wellness data into a coordinated data driven research effort that delivers maximum value for people with disability or for the wider disability services sector (including delivering the skills necessary for the community to best capitalise on such emerging data).  

This project will deliver a comprehensive strategy for the realisation of such a data driven impact focused program. It is centred on a genuinely inclusive development process that will engage across the disability community, disability service providers, leaders of the NDDA, government decision makers and a multidisciplinary team of UTS researchers from across data science, data engineering, design thinking, statistics, health, business, law, built environment and education disciplines. It will deliver the partnerships and collateral necessary to realise a large scale program of funded research in the data driven disability space, with a focus on the codesign of a multimillion-dollar ARC Industrial Transformation Training Centre. 

What impact will we create?

The project design delivers a deeply collaborative and inclusive research design program that deliberately and actively includes people with disability at the centre of the process, including in data analytic, administrative and senior leadership/chairing roles. Our hope is that this approach does not just result in a significantly and meaningfully better outcome, but that it also acts as an exemplar to other data science and artificial intelligence researchers operating in the disability space. 

Additionally by developing the roadmap for an ARC Industrial Transformation Training Centre that explicitly includes identified positions for people with disability at both the post-graduate and post-doctoral levels in the field of data science, we can simultaneously address a critical talent shortage in Australia, provide a high-value pathway to employment for people with disability, and ensure that “nothing about us without us” extends beyond design to include active and meaningful participation in the delivery of research. Ultimately the research will be a key part of transforming a sector that has suffered through disparate, inaccessible and under-utilised disability data to one empowered by rich, transparent and powerful data-driven solutions that have been designed for and with the community that will use and benefit from them. In the context of the NDIS, it will facilitate enhanced evidence-based approaches to the design, allocation and resourcing of disability services. 

Who will we work with?

• Prof James Brown, Faculty of Science, School of Mathematical and Physical Sciences
• Prof Simon Darcy, UTS Business School
• Prof Valerie Gay, Faculty of Engineering & IT
• Prof Bronwyn Hemsley, Faculty of Health, Speech Pathology
• Dr Philippa Carnemolla, Faculty of Design, Architecture & Building
• Dr Deborah Debono, Faculty of Health, School of Public Health
• Dr Hamish Robertson, Faculty of Health, School of Public Health
• Dr Linda Steele, Faculty of Law
• Dr Kirsty Young, Faculty of Arts and Social Sciences, School of Education

We are building a network of organisations to co-design and deliver this project. If you are interested in participating please contact DisabilityResearch@uts.edu.au.

Research Design

Research methodologies will include a co-creation panel; data mapping of current databases and online questionnaire to be done in conjunction with the UTS Disability Citizenship Monitor Project.  

The project will deliver the complete co-design process, including:  

• An inclusive workshop program designed to clarify and flesh-out priority data-driven research opportunities from the perspective of persons with disability, service provider, data custodian, government decision maker, and researcher. The program will document success metrics, data elements, ethical processes, stakeholders, technologies and science that will underpin a large-scale impact-focused research program. Findings from the workshop will result in publications on data science co-design in the disability space (an area which has been underserved). 

• Surveying of people with disability, testing concepts developed in the workshop program to ensure research design is strongly aligned with community need. Findings will also result in publications exploring the diversity of views held by people with disability about the appropriate use of data in different forms of data-driven research. 

• The development of all written material for a large-scale Training Centre that will unlock a new data-driven innovation ecosystem for Australia’s disability sector, built from the ground up on the principles of genuinely participatory research, development and delivery. 

Funding Support

• Cross Faculty Collaboration Grant, UTS  

Network Research Themes

• Enabling Technology