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

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.

Original languageEnglish
Pages (from-to)439-462
Number of pages24
JournalIntellectual and developmental disabilities
Volume57
Issue number5
DOIs
Publication statusPublished - 1 Oct 2019

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Developmental Disabilities
Information Storage and Retrieval
Intellectual Disability
disability
Disabled Persons
methodology
Research
program planning
physician's care
Population
Health Services
Canada
Fertility
fertility
Mental Health
health service
equity
Chronic Disease
utilization
mental health

Cite this

Balogh, Robert ; Leonard, Helen ; Bourke, Jenny ; Brameld, Kate ; Downs, Jenny ; Hansen, Michele ; Glasson, Emma ; Lin, Elizabeth ; Lloyd, Meghann ; Lunsky, Yona ; O'Donnell, Melissa ; Shooshtari, Shahin ; Wong, Kingsley ; Krahn, Gloria. / Data Linkage : Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research. In: Intellectual and developmental disabilities. 2019 ; Vol. 57, No. 5. pp. 439-462.
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Data Linkage : Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research. / Balogh, Robert; Leonard, Helen; Bourke, Jenny; Brameld, Kate; Downs, Jenny; Hansen, Michele; Glasson, Emma; Lin, Elizabeth; Lloyd, Meghann; Lunsky, Yona; O'Donnell, Melissa; Shooshtari, Shahin; Wong, Kingsley; Krahn, Gloria.

In: Intellectual and developmental disabilities, Vol. 57, No. 5, 01.10.2019, p. 439-462.

Research output: Contribution to journalArticle

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