Health minsters urged to resolve digital data issues

| July 16, 2019

The Australian Academy of Science and the Australian Academy of Health and Medical Sciences are calling for the COAG Health Council to address health data availability and linkage as a priority at its next meeting later this year.

The call follows a roundtable convened by the two Academies that brought together some of Australia’s leading health and medical researchers, clinicians and other experts to identify areas for improvement.

President of the Australian Academy of Health and Medical Sciences, Professor Ian Frazer, said that there is a real opportunity to harness the power of data to drive improvements in health outcomes – by creating an environment in which the safe and secure use of patient data is balanced with the rights and interests of individuals.

“The intelligent use of health data gathered from the community is a critical part of moving towards better and more cost-effective health systems. Research studies using aggregated data revealed, for instance, the link between smoking and lung cancer, and the unfortunate consequences of iodine deficiency in infants.

“There are some valuable initiatives in Australia that are improving data access and linkage for legitimate research purposes, but more needs to be done to make data available and hence broaden the impact of such efforts.

“There remains a plethora of complex jurisdictional, legal and ethical regulations that limit the ability of researchers and clinicians to effectively access and use aggregated health data to improve care.

“Access to health data for research can lead to interventions that have real and immediate impact on community health, and can also potentially avert unwanted rare but significant health problems associated with drugs and implanted devices” said Professor Frazer, who is also a Fellow of the Australian Academy of Science.

A 2018 ‘Flying Blind’ report by the Digital Health Cooperative Research Centre and CMCRC cites a NHMRC-funded study which took three years to gain Commonwealth approval. In the study cancer notifications were linked with de-identified Medicare Benefits Schedule (MBS) data. Researchers found an increased cancer risk for some individuals exposed to CT scans. The case study is explained further below.

The Australian Academy of Science’s Professor Michael Barber said recent advances in health and medical technologies and research methods means there is a significant opportunity for Australia to realise innovation and improvement in preventative health, medicine and healthcare.

“Australia, led by action from Federal and State/Territory Health Ministers, needs to build on existing efforts to enable efficient, rigorous, safe and secure use of data for research, while protecting the rights and interests of individuals,” Professor Barber said.

The Academies are calling for renewed and expanded action in the following areas:

·        Resolve regulatory barriers limiting timely access to existing population and health data collected at state and national levels. In this context, Australia can learn from jurisdictions such as Scotland, Canada and New Zealand. In addition, better access to private sector held data will help resolve inefficiencies.

·        Enhance medical and community understanding of, and protocols for safe and ethical collection, storage, synthesis and analysis of health data.

·        At Commonwealth level build upon successful State-based linkage programs such as the Public Health Research Network.

·        Develop new approaches to accessing and utilising data from novel sources, including the Internet of Things, social media and wearables.

·        Ensure continued engagement with and respect for Indigenous data sovereignty.

·        Further improve the quality and reliability of health and medical data collections.

·        Bolster efforts to generate a data-skilled clinical and research workforce through expanded professional and post-graduate training programs.

A copy of the communique can be found here.

The Flying Blind Case Study

In 2008 researchers at the University of Melbourne received funding from the National Health and Medical Research Council (NHMRC) to investigate whether CT scans increased the risk of cancer by linking cancer notifications (held by the States and Territories) with de-identified Medicare Benefits Schedule (MBS) data.

However, the study was seriously delayed: Commonwealth approval took three years to gain. After linking the necessary data, the researchers found that cancer risk was increased by an average of 24% for individuals exposed to CT scans before the age of twenty; for those exposed at ‘very young ages’, the risk was 200% higher.

The results were published in the British Medical Journal in 2013 (39) and led to the development of educational materials a year later aimed at making both radiologists and the public aware of the risks. The delays encountered by the researchers may well have led to a number of unnecessary exposures to CT radiation, and, in the longer run, unnecessary cancers.