On 3 April 2020, the submitted a joint response with the Australian Academy of Science to the consultation on the National Health Information Strategy (NHIS).
The response emphasised the following opportunities and issues:
- Nurturing an academic base in the disciplines of biostatistics and epidemiology is key to help produce scientific evidence from the data that is being collected.
- Standardisation and harmonisation of system platforms are a fundamental technical requirement for a national mission.
- Data needs to comply with FAIR (Findable, Accessible, Interoperable and Reusable) principles and CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility and Ethics).
- There is an opportunity to improve the capability and interoperability of the Australian data infrastructure while keeping the patient data safe and secure.
The Academies issued a joint call to action last year on the improving accessibility and linkage of data for better health outcomes, outlining the following principles:
- 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 full response to the National Health Information Strategy (NHIS) can be downloaded below.