Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research

Robert Balogh, Helen Leonard, Jenny Bourke, Kate Brameld, Jenny Downs, Michele Hansen, Emma Glasson, Elizabeth Lin, Meghann Lloyd, Yona Lunsky, Melissa O'Donnell, Shahin Shooshtari, Kingsley Wong, Gloria Krahn

Research output: Contribution to journalArticle


Data linkage holds great promise for generating new information about people with intellectual and developmental disabilities (IDD) as a population, yet few centers have developed the infrastructure to utilize this methodology. Two examples, from Canada and Australia, describe their efforts in building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research. The value of data linkage is illustrated through new estimates of prevalence of IDD; health service utilization patterns; associations with sociodemographic characteristics, and with physical and mental health conditions (e.g., chronic diseases, injury, fertility, and depression); and findings on equity in medical treatments. Examples are provided of findings used for governmental policy and program planning.

Original languageEnglish
Pages (from-to)439-462
Number of pages24
JournalIntellectual and developmental disabilities
Issue number5
Publication statusPublished - 1 Oct 2019


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