In June 2022, the Australian Academy of Health and Medical Sciences (AAHMS) provided a submission to the Australian Government’s consultation on the Australian Data Strategy.
The Academy welcomed the vision set out in the Australian Data Strategy, which focuses on three key themes for the Government’s whole-of-economy vision of data: maximising the value of data, trust and protection, and enabling data use.
We recognize that data is essential in health and medical research, and any advancements to Australia’s data ecosystem will impact health and medicine in this country. Our submission focused on challenges and opportunities specific to health and medicine, and in particular, health and medical research and innovation.
In health and medicine, patient and public data offer important opportunities to advance our understanding of health and disease, and to develop better approaches to prevention and treatments.
We recognise that Australia needs to create an environment in which safe and secure use of patient and public data for legitimate research purposes is balanced with the rights and interests of individuals.
- The Academy supports any efforts to harmonise Australia’s data policy, governance and infrastructure to ensure consistency and reliability.
- The use of data must be done in an open and transparent environment.
- The Academy supports the Australian Government’s vision to make better use of data sharing between the public and private sectors for legitimate research purposes, but the Strategy should more strongly encourage and promote openness, transparency and security to ensure the use of data for public good can be maximised.
- We strongly advocate for the FAIR (Findable, Accessible, Interoperable and Reusable) and CARE (Collective benefit, Authority to Control, Responsibility, Ethics) principles to be explicitly stated in the Australian Data Strategy.
- The Strategy should support and advance existing efforts to put research and data pertaining to Aboriginal and Torres Strait Islander peoples in the hands of Aboriginal and Torres Strait Islander peoples. In addition, the Australian Government should partner and collaborate with First Nations peoples to help expedite First Nations goals and self-determined interests to mitigate the impact of current data gaps on health equity.
- The Academy supports additional investment into the development of training programs and workforce incentives that grow and retain an Australian workforce with the necessary skills to implement the Australian Data Strategy.
- We support the development of national policies that promote the harmonisation and streamlining of health data collection, linkage and sharing within existing data infrastructure. We urge that health and medical researchers are formally and actively engaged in the design and governance of new national data policies and data assets to ensure that these deliver maximal value for health-enhancing research.
- The Strategy should address in greater depth how data biases will be managed and mitigated.
- The Strategy is an opportunity for the Australian Government to identify leaders across the health and medical research sector that it will collaborate with to ensure the Strategy can be implemented nationally.
Our response drew on the findings of a recent Academy report, Australia’s Data-Enabled Research Future: Health and Medical Sciences, which scanned the national datasets and infrastructure needed to ensure data can be used appropriately, and for maximum benefit, across the health and medical sciences research sector. This report was released as part of a broader project conducted with the Australian Research Data Commons (ARDC), the other four Learned Academies and the Australian Council of Learned Academies (ACOLA).
Download the Academy’s Australian Data Strategy submission below.