Database access helps protect privacy: Stanley

Western Australia's well-established record-linked healthcare database had been an important innovation for research, but had also helped to better awareness of privacy issues, according to Prof Fiona Stanley, director of the Telethon Institute for Child Health Research in Perth.

Stanley -- an executive director of the Australian Research Alliance for Children and Youth, and a former Australian of the Year -- told the 55th Session of the International Statistics Institute in Sydney that she was a staunch believer in proactive approaches to improving community health. Linking data, she said, provided good, solid evidence for improving the health of society.

But privacy issues are particularly sensitive in health data and the real issues are in balancing how to use data with permission, she said.

Stanley was involved in setting up a record-linked database in WA back in 1980, which enabled all of the information about births, children and young people to be linked together so that total population based analyses could be conducted. This information was collected without consent, and the linkage studies conducted in the Telethon Institute without consent between 1980 and 2003.

"In those days there weren't the issues about privacy," Stanley said. "We linked in perinatal records, into birth registrations, into death registrations, all of these statutory collections into a composite birth record. We also managed to get a lot of social information, and we had birth defects and cerebral palsy registries and a lot of other data that we could link in, and this generated huge amounts of information about antenatal aspects of cerebral palsy, patterns of hospitalisation in relation to antenatal exposures, and so on."

In 2004 a consortium was formed between four Western Australian organisations: the University of WA, the Telethon Institute, the WA Department of Health and Curtin University. This resulted in the formation of the data linkage unit, which was set up at UWA. The unit collects and links health records independently, creating a system of data linkage that provides for increased data linkages and also much more privacy.

"We believe this is best practice now for data linkage," said Stanley. "The biggest advantage of this data linkage now has been linkages into the prescription drug data and Medicare data and the Australian child immunisation register."

Researchers can now access defined portions of the data through the linkage unit. In order to do this, a researcher has to go through their own ethics committee, a linkage unit ethics committee and a confidentiality committee.

"I think there is a lot about privacy that still needs to be addressed -- for example, the ethics committees and how important they are to approve this kind of work, and an understanding of the public good by the community," Stanley said. "We really need to sell this as there is a lot of ignorance in the community about the value of research."