The Academy has responded to a consultation on the National Health Information Strategy (NHIS) Framework, jointly with the Australian Academy of Science.
In our response, we emphasise the importance of nurturing an academic base in the disciplines of biostatistics and epidemiology to help produce scientific evidence from the data that is being collected. Furthermore, the standardisation and harmonisation of system platforms are a fundamental technical requirement for a national mission, while the health data that is produced needs to comply with the FAIR principles – making them Findable, Accessible, Interoperable and Reusable – and CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility and Ethics).
Australia has an opportunity to develop a data infrastructure that is capable of more capacity, interoperability while keeping the patient data safe and secure. Australia could, for example, benefit from generating its own international epidemiological datasets, crucial in the COVID-19 outbreak, while an improved data infrastructures could allow for advances in AI and ICT technologies. Opportunities to improve health also arise when data are combined beyond health – for instance, those from other domains such as societal data (e.g. from social services, aged care, justice services) and environmental data.
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 consultation response on the NHIS Framework can be downloaded below.