On 11 July the Academy published a joint call for action in partnership with the Australian Academy of Science for ‘Improving accessibility and linkage of data to achieve better health outcomes for all Australians’.
The statement highlighted the need to reduce barriers caused by jurisdictional, legal and ethical regulations that risk causing serious delays to health and medical research. The statement calls for 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.
In partnership, the Academies call 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.
The statement was informed by a roundtable discussion on 8 March 2019 at the Garvan Institute in Sydney and was signed by 27 meeting participants, who were drawn from across fields and sectors, including academia, health, data science and government.
The call to action can be downloaded below and you can read the associated news item here.