IDEA (Intellectual Disability Exploring Answers) Database
Dates of project
January 2002 - present
Partner organisations
WA Department of Communities, WA Department of Education, Office of Digital Government (WA Department of Premier and Cabinet), National Disability Insurance Agency
Key researcher/s involved
Professor Helen Leonard, Jenny Bourke, Dr Caitlin Gray, Dr Kingsley Wong, Dr Emma Glasson
Project description
Intellectual disability is often a neglected area of public health. There are few sources of dedicated data in Australia to accurately estimate population prevalence and allow visibility of rare conditions. There are differing criteria used for inclusion across administrative datasets and data siloed across sectors. Access to reliable population-based data requires ongoing collaboration with multiple agencies. The IDEA database is a population-based infrastructure for individuals with intellectual disability and/or autism in Western Australia (WA) that combines data from State and Commonwealth government sources. It provides a foundation to investigate causes, health outcomes, care needs and preventive strategies, and help service planning for people with intellectual disability and their families.
Since 2002, the IDEA team at The Kids Research Institute Australia has partnered with WA Government (Department for Communities, formerly the Disability Services Commission; and the Department of Education), and the Australian Commonwealth (National Disability Insurance Agency) to build a data resource and improve visibility for people with intellectual disability in WA. The IDEA database is a de-identified repository of data on all individuals in WA born since 1983 who have been diagnosed with an intellectual disability (https://www.thekids.org.au/projects/idea-intellectual-disability-exploring-answers/). Currently it includes over 37,200 individuals born in WA 1983-2024, diagnosed with intellectual disability and/or autism, and a further 8,600 born outside of WA.
Linkage of IDEA to other population data held at the WA Department of Health (https://www.health.wa.gov.au/articles/a_e/data-linkage) or PeopleWA (https://www.wa.gov.au/organisation/department-of-the-premier-and-cabinet/office-of-digital-government/peoplewa) is possible for approved projects. This capability allows connection to various health, social, education and justice databases to evaluate health and wellbeing outcomes and needs of people with intellectual disability over time.
Partnerships with WA Government and the Australian Commonwealth have improved the quality and availability of data, and the ways in which information for people with intellectual disability is accessible in WA, making IDEA a unique Australian initiative and a valuable research resource.