Call to action on improving data accessibility and linkage for research

The Academy has joined with the Australian Academy of Science to call on the COAG Health Council to address health data availability and linkage as a priority at its next meeting later this year. The call comes in a joint statement, published today, calling for action. This statement highlights the jurisdictional, legal and ethical regulations risk causing barriers for research. AAHMS President, 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 for legitimate research purposes 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.” Data is an important foundation for many aspects of Australia’s world-leading health and medical research, and the Academies jointly call for the need to ensure high standards and reliability of data collection while Commonwealth level linkage programs are necessary to help strengthen data analysis. Furthermore, the Academies are calling for an enhanced understanding of and a protocol for the safe and ethical collection, storage, synthesis and analysis of health data. The continued respect for Indigenous Data Sovereignty must also remain a priority. The statement, entitled ‘Improving accessibility and linkage of data to achieve better health outcomes for all Australians’, has been informed by a roundtable discussion on 8 March 2019 at the Garvan Institute in Sydney and has been signed by 27 meeting participants, who were drawn from across fields and sectors, including academia, health, data science and government. The full statement can be downloaded here and you can also visit our policy project page for more information.

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