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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

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Linked data: opportunities and challenges in disability research.

Emma J Glasson¹, Rafat Hussain

¹School of Population Health, University of Western Australia, Perth, Australia. emma.glasson@health.wa.gov.au

Journal of Intellectual & Developmental Disability

|November 29, 2008

Summary

Linking health and administrative data enhances disability research by providing comprehensive profiles. Careful management of challenges and privacy is key to maximizing outcomes from this valuable research approach.

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Area of Science:

Health Services Research
Biostatistics
Public Health

Background:

Disability research data are often fragmented across discrete registers, sometimes crossing political boundaries.
Individual records present challenges for comprehensive analysis in disability research.

Purpose of the Study:

To explore the opportunities and challenges of using linked health and administrative data for disability research.
To provide examples from Australian and international research projects.

Main Methods:

Utilizing linked health and administrative data for comprehensive disability research.
Examining case studies from Australia and overseas.

Main Results:

Linked data provide significant value for profiling health issues, including morbidity and mortality.
This approach allows for assessment of healthcare costs and service quality.

Conclusions:

Advances in technology and data linkage protocols increase the feasibility of using linked data for research.
Protecting individual privacy is paramount while managing challenges to maximize research outcomes.