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.
by Kate Hawkshaw
More news & opinion articles
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