Linked data: opportunities and challenges in disability research

J Intellect Dev Disabil. 2008 Dec;33(4):285-91. doi: 10.1080/13668250802441409.


Background: Disability research data often exist in the form of individual records located within discrete registers that may extend across sensitive political boundaries.

Method: This paper discusses the opportunities and challenges associated with using linked health and administrative data for disability research, with examples from research projects conducted both in Australia and overseas.

Results: Linked data offer distinct value in providing a comprehensive profile for a range of health issues, such as morbidity, mortality, assessing health care costs and/or quality of service provision.

Conclusions: While the use of record linkage in health research is not a novel concept, recent advances in technology and electronic data management plus improved data linkage protocols have markedly increased the feasibility and opportunity for successfully utilising data linkage for the purposes of research, while at the same time protecting the privacy of the individual. An awareness and appropriate management of the associated challenges is required to maximise the outcomes of disability research using linked data.

Publication types

  • Review

MeSH terms

  • Australia
  • Biomedical Research*
  • Child
  • Developmental Disabilities*
  • Finland
  • Humans
  • Intellectual Disability*
  • Internationality*
  • Medical Record Linkage*
  • Netherlands
  • United Kingdom