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UNSW big data experts Professor Sallie Pearson and Professor Louisa Jorm have been appointed to national advisory committees to support the government on how to better share and collect public sector data.

Professor Pearson, head of the Medicines Policy Research Unit at UNSW’s Centre for Big Data Research in Health, has been appointed to the National Data Advisory Council (NDAC), the key advisory body to the National Data Commissioner.

NDAC, established in 2019, includes experts from government, community, business and research sectors to represent a range of perspectives on the sharing of data and protection of privacy and confidentiality.

Professor Louisa Jorm, Director of the Centre for Big Data Research in Health, has been appointed to the Australian Institute of Health and Welfare’s (AIHW) Independent Expert Panel for development of a National Health Information Strategy.

Professor Pearson said it was an honour to represent the health research community on the Council.

“During its first year, NDAC will advise on the development of new data sharing and release legislation which gives us the opportunity to modernise the way public sector data is used,” Professor Pearson said. “Data influences our lives in so many ways. We generate data every day in everything we do – we need to leverage that ethically and safely and put it to good use.”

“NDAC will assist the National Data Commissioner to find the right balance between streamlining the sharing and release of data and ensuring the protection of privacy. Developing new legislation is crucial in making Australia globally competitive in our policies, services and research – currently we are lagging behind other countries.”

The Minister for Government Services, Stuart Robert, announced the appointment of Professor Pearson to the Council, a vacancy left by the retirement of Professor Fiona Stanley. In a media release, Mr Robert said the work of the NDAC will provide the foundation for the government’s vision for Service Australia, the rebranded Department of Human Services.

“Professor Pearson is well placed to advise the National Data Commissioner on the opportunities for government data to deliver better health outcomes for all Australians.”

Big data

“In Australia we have universal health care and consistent data collection – we need a national strategy that crosses jurisdictional boundaries so big data can be connected up," Professor Lousia Jorm.

Professor Jorm, appointed to the AIWH panel that will develop a National Health Information Strategy, said a new framework is essential as the number of healthcare big data sources accelerate. 

“The rise of My Health Record, expanding hospital health electronic records, an increasing number of apps, social media, fit bits and crowd supplying data means significant consideration needs to be given to this complex landscape. In particular, how Australia is going to use this to improve healthcare and manage risks around privacy and bias or exclusion of certain groups,” said Professor Jorm.

Professor Jorm said the National Health Information Strategy will help provide an enduring framework that can achieve coordinated, integrated and timely collection and development of health data that will meet the information needs of all who use and work Australia’s health system.

The AIWH panel devising the Strategy consists of five members from public, Indigenous, research, clinical and consumer health areas across Australia.

“In Australia, we have universal health care and good and consistent data collection – we need a national strategy that crosses jurisdictional boundaries so data can be connected up. If we don’t do it now – it would be a real opportunity lost. It is crucial for Australia envision its own future for a data-driven “learning healthcare system” rather than this being steered by large multinational tech firms,” Professor Jorm said.

Professor Jorm identified that one of the key objectives of the Strategy will be to help hospitals around Australia better manage electronic medical records.

“Clinical data has not been utilised systemically for analysis or research, we need to use these data both to improve care at the local clinical level and to understand population-level health.”

The first meeting for AIHW’s Independent Expert Panel will be later this month.