Finding the missing link: CHeReL putting it all together
Our understanding of the factors that influence physical, social and emotional well-being and impact upon quality of life, health status and burden of disease can be advanced by research using linked data. It can also assist in the evaluation of type and quality of health and community services.
Data linkage brings together information that relates to the
same individual, place or event from different databases. Through
creating chronologies of health events and combining them, data
linkage reveals a bigger picture about the health of people in NSW
and the ACT.
Advances in technology, the increasing availability of large
scale datasets and the development of privacy preserving protocols
have meant that the popularity and use of linked data for research
purposes has flourished.
Since its establishment in 2006 the Centre for Health Record
Linkage (CHeReL) has been managed and funded as a collaboration
between nine organisations. From 1 July 2009 the Cancer Institute
NSW and the NSW Department of Health will jointly manage the CHeReL
and provide significant base funding to support its operation.
The CHeReL will increase the opportunities
for researchers to conduct their studies on a population-wide
basis.
The data sets routinely linked by the CHeReL include NSW and ACT
hospital separations, emergency department presentations, cancer
notifications, midwives' notifications, births and deaths. The
CHeReL also provides a service to link other datasets together for
projects that are in the public interest. All projects
require approval from a human research ethics committee and the
owners of the datasets and are carried out using privacy preserving
linkage protocols. The CHeReL uses personal information such as
name and address to create linkage keys, but does not use or hold
health information which stays with the original database.
Linking data that already exist is relatively quick and
cost-effective compared to doing a research study from the
beginning. Record linkage provides data for whole populations that
would be prohibitively expensive to collect in any other way. The
CHeReL represents a significant effort to combine information from
several health data sets for research purposes, and will increase
the opportunities for researchers to conduct their studies on a
population-wide basis.
The increased use of linked data in NSW
and its potential application in cancer control and prevention are
exciting developments for research in NSW.
For cancer, data linkage can be used to enable monitoring and
research on risk factors, patterns of care and health service
utilisation, as well as patient outcomes.
In the past year alone CHeReL has worked on more than 30 linkage
projects across a range of fascinating subjects. Data linkage by
CHeReL hit the headlines earlier this year when new research by the
Cancer Institute NSW provided the strongest indication yet that
smoking during pregnancy increases a child's likelihood of
developing cancer.
By studying the incidence and risk factors for cancer in
Australians who have had an organ transplantation, researchers are
hopeful that the findings will lead to the development of tailored
cancer screening programs. This is groundbreaking work and wouldn't
happen without data linkage.
Manager, Katie Irvine said, "we're very excited about two
projects underway that are investigating differences amongst women
in cervical screening behaviour and cervical cancer incidence.
Another interesting project will evaluate whether a specific
treatment program in prison is associated with better health
outcomes and reduced recidivism after release."
Katie says these projects demonstrate the wealth of information
available when organisations are willing to share data for linkage
projects. The increased use of linked data in NSW and its potential
application in cancer control and prevention are exciting
developments for research in NSW.
Visit
www.cherel.org.au
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