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Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental
Robert Balogh1, Helen Leonard1, Jenny Bourke1
1Robert Balogh, Ontario Tech University, Oshawa, Ontario, Canada; Helen Leonard and Jenny Bourke, Telethon Kids Institute, The University of Western Australia, Perth; Kate Brameld, Curtin University, Perth, Western Australia; Jenny Downs, Michele Hansen, and Emma Glasson, Telethon Kids Institute, The University of Western Australia, Perth; Elizabeth Lin, Centre for Addiction and Mental Health, Toronto, Ontario, Canada; Meghann Lloyd, Ontario Tech University, Oshawa, Ontario, Canada; Yona Lunsky, Centre for Addiction and Mental Health, Toronto, Ontario, Canada; Melissa O'Donnell, Telethon Kids Institute, The University of Western Australia, Perth; Shahin Shooshtari, University of Manitoba, Winnipeg, Manitoba, Canada; Kingsley Wong, Telethon Kids Institute, The University of Western Australia, Perth; and Gloria Krahn, Oregon State University, Corvallis.
Abstract:
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.
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