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

Citation:
Balogh R, Leonard H, Bourke J, Brameld K, Downs J, Hansen M, Glasson E, Lin E, Lunsky Y, O'Donnell M, Shooshtari S, Wong K, Krahn G. Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research. Intellectual and developmental disabilities. 2019;57(5):439-62

Keywords:
Data linkage; health surveillance; intellectual and developmental disabilities

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.