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July 11, 2013

Researchers and Consumers to Gain from Better Access to Deaths Data

A new initiative that provides medical researchers with access to valuable data about deaths in Australia is set to deepen understanding about patterns of disease and injury, and the effectiveness of treatments and prevention efforts and campaigns.

BioGrid Australia, the Australian Institute of Health and Welfare and the University of Melbourne have joined forces to provide a much-needed service for medical research efforts across Australia.

Ms Maureen Turner, CEO of BioGrid, said today: “This partnership will help medical researchers extract knowledge to benefit the health of Australians.”

“By being able to access datasets more easily, and particularly those about how, when and why Australians die, researchers will be able to progress their work more efficiently which will lead to better information for clinical trials and the medical profession.”

Until now, researchers had to go through a labored approval process often involving several agencies to access deaths data in this country. 

Now data held by the Australian Institute of Health and Welfare will be released in a way that satisfies privacy, ethical, legal and data security requirements.

David Kalisch, Director and CEO of the Australian Institute of Health and Welfare, said the Institute was committed to opening up access to data under its custodianship for bona fide research purposes, subject to privacy and confidentiality provisions, and had put in a great deal of effort over a long time to get the right administrative, ethical and technical processes in place.
 
“We are pleased that those efforts have now paid off, and researchers using the BioGrid system and datasets will now have that kind of ethical and secure access to deaths data”, he said.
 
“It is a system that should inspire patient confidence that their private details remain confidential and at the same contribute to the ongoing commitment to medical research in Australia.”

Underpinning the new approach is a privacy-protecting mechanism for matching data called GRHANITE™ that has been developed by the University of Melbourne Rural Health Academic Centre.

Dr Douglas Boyle, Head of the GRHANITE Health Informatics Unit, said that the pioneering software was enabling researchers to address problems that have long resided in the ‘too hard box.’

 

The GRHANITE™ system uses advanced encryption and data analysis techniques to allow researchers – with appropriate controls - to link data between sources of information that have never been possible before.

 

Dr Boyle said: “This has the potential to open-up whole new areas of research – and it does so whilst conforming to tight Australian privacy, ethical legal and data security requirements.”


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