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

被引:21
作者
Balogh, Robert [1 ]
Leonard, Helen [2 ]
Bourke, Jenny [2 ]
Brameld, Kate [3 ]
Downs, Jenny [2 ]
Hansen, Michele [2 ]
Glasson, Emma [2 ]
Lin, Elizabeth [4 ]
Lloyd, Meghann [1 ]
Lunsky, Yona [4 ]
O'Donnell, Melissa [2 ]
Shooshtari, Shahin [5 ]
Wong, Kingsley [2 ]
Krahn, Gloria [6 ]
机构
[1] Ontario Tech Univ, Oshawa, ON, Canada
[2] Univ Western Australia, Telethon Kids Inst, Perth, WA, Australia
[3] Curtin Univ, Perth, WA, Australia
[4] Ctr Addict & Mental Hlth, Toronto, ON, Canada
[5] Univ Manitoba, Winnipeg, MB, Canada
[6] Oregon State Univ, Corvallis, OR 97331 USA
关键词
intellectual and developmental disabilities; data linkage; health surveillance; CARE SENSITIVE CONDITIONS; WESTERN-AUSTRALIA; HEALTH DATA; BIG DATA; ADMINISTRATIVE DATA; CHILD MALTREATMENT; LINKED DATA; POPULATION; PREVALENCE; PEOPLE;
D O I
10.1352/1934-9556-57.5.439
中图分类号
G76 [特殊教育];
学科分类号
040109 ;
摘要
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.
引用
收藏
页码:439 / 462
页数:24
相关论文
共 118 条
[31]  
Developmental Disabilities Primary Care Program, 2018, DEV DIS PRIM CAR PRO
[32]  
Dube P., 2016, Nowhere to turn: Investigation into the Ministry of Community and Social Services' response to situations of crisis involving adults with developmental disabilities
[33]  
DUNN HL, 1946, AM J PUBLIC HEALTH, V36, P1412
[34]  
Durbin A., 2018, COMMUNICATION MAY
[35]   International Committee for Monitoring Assisted Reproductive Technologies world report: Assisted Reproductive Technology 2008, 2009 and 2010 [J].
Dyer, S. ;
Chambers, G. M. ;
de Mouzon, J. ;
Nygren, K. G. ;
Zegers-Hochschild, F. ;
Mansour, R. ;
Ishihara, O. ;
Banker, M. ;
Adamson, G. D. .
HUMAN REPRODUCTION, 2016, 31 (07) :1588-1609
[36]   Western Australia unveils advances in linked data delivery systems [J].
Eitelhuber, Tom ;
Davis, Geoff ;
Rosman, Diana ;
Glauert, Rebecca .
AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH, 2014, 38 (04) :397-398
[37]   Poverty, socio-economic position, social capital and the health of children and adolescents with intellectual disabilities in Britain: a replication [J].
Emerson, E. ;
Hatton, C. .
JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2007, 51 :866-874
[38]   Maternal Psychiatric Disorder and the Risk of Autism Spectrum Disorder or Intellectual Disability in Subsequent Offspring [J].
Fairthorne, Jenny ;
Hammond, Geoff ;
Bourke, Jenny ;
de Klerk, Nick ;
Leonard, Helen .
JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 2016, 46 (02) :523-533
[39]  
Finlayson Gregory S, 2011, Healthc Policy, V6, P83
[40]  
Fitzgerald O., 2017, ASSISTED REPROD TECH