Australia could be a global leader in medical research and data-driven health innovation, but we’re being held back by siloes, fragmentation and competing national and state priorities. Again.
Australia could become a global leader in medical research, data-driven care and health innovation. But a tug-of-war between national goals and state control, along with fragmented systems, is holding us back.
That’s the takeaway from the Health Data is a National Asset: Observations into Unlocking the value of Australia’s Health and Medical Data for Research, Improvement and Innovation report delivered by the Digital Health Cooperative Research Centre (DHCRC).
According to DHCRC CEO Annette Schmiede, our health data is underused but holds enormous value.
“Australia is well positioned to pioneer research and innovation that sets the benchmark in the use of health data but the time for action is now.
“We need a national health and medical data blueprint to guide long-term investment and greater coordination, enabling world-leading data-driven research to support health care improvement and innovation.
“Realising this vision requires collaboration across government, service providers, researchers, and industry, with benefits flowing to patients, health systems, research, and the wider economy,” she said.
The report outlines five strategic observations.
No visibility of a national health and medical data blueprint
Despite there being a bevy of data-sharing initiatives such as the Australian Data Strategy, Digital Economy Strategy, and the National Digital Health Strategy, there isn’t a nationally recognised blueprint to guide health and medical data.
“It is not clear how these strategies relate to one another or how they collectively support the broader vision,” the authors wrote.
“Through its coordination of national digital health projects, the DHCRC has observed first-hand the impact of this fragmentation. A review of projects underscores persistent barriers to data access, integration, and interoperability, further complicated by inconsistent and risk-averse data frameworks across jurisdictions.”
With a national blueprint, there would be shared goals, measurable targets and delivery timelines to create a more coordinated and trustworthy data environment.
Discoverability is limited by disconnected infrastructure and access points
The authors highlighted there is disconnected storage, inconsistent metadata standards, and the absence of a unified access point.
“Out of the 75 organisations reviewed, more than 25% — including major bodies such as the Population Health Research Network, Australian Institute of Health and Welfare, Sax Institute, Melbourne Academic Centre for Health, Australian Bureau of Statistics, Australian Commission on Safety and Quality in Health Care, and several state and territory health departments – maintain their own version of a ‘data catalogue’,” they wrote.
They highlighted an example of a researcher seeking data for a national study on chronic disease trends who would need to consult multiple separate data catalogues across AIHW, ABS, Health Data Australia, state health departments, non-government organisations like the National Heart Foundation, primary care, centres of excellences and other research organisations.
“With no unified metadata model or platform, the discovery process is time-consuming, disconnected, and often discourages collaboration – delaying research and innovation that could benefit public health,” the authors wrote.
They said the launch of Health Data Australia in July 2023 marked an opportunity to coordinate national data infrastructure. They believe it could complement existing national assets such as the AIHW National Health Data Hub to deliver a single, trusted entry point to distributed data assets.
Opportunity for strategic consolidation under national stewardship
There has been significant investment in medical research from entities such as National Collaborative Research Infrastructure Strategy, National Health and Medical Research Council, Medical Research Future Fund, Australian Research Data Commons, Australian Digital Health Agency, Australian e-Health Research Centre, and the AIHW.
However, the report found that multiple organisations across government, academia and research institutes have overlapping mandates and siloed functions.
“Without strategic consolidation or alignment, the system risks inefficiency, duplication, and diminishing returns on public investment,” the authors wrote.
They believe they could model successful international models such as FinData and Health Data Research UK to create a national guided approach to health data infrastructure.
Related
“Australia’s edge lies not only in the quality of its data assets but in its potential to lead globally in AI-ready, privacy-preserving data infrastructure. A national coalition or alliance could provide the leadership, coherence, and long-term stewardship necessary to fully realise this,” they wrote.
Person-centred data infrastructure is under-developed
People need to see how their data improves their own health and wellbeing, said the report. It’s only then that they’ll trust it and consent to it being used in future medical research, improvement and innovation with artificial intelligence and machine learning.
There are some programs being developed, such as the Sparked program, led by CSIRO’s AeHRC in collaboration with the Department of Health, Disability and Aged Care, the ADHA, and HL7 Australia.
At a state level, NSW Health is delivering the Single Digital Patient Record initiative, which aims to deliver a secure, holistic, and integrated view of a patient’s care across the state’s health system.
However, the authors raised the question of how state-based systems will interface with national platforms.
“Ensuring alignment between state initiatives and national infrastructure will be essential to avoid overlap and maximise public value,” they wrote.
They also posed challenges for communities in border towns such as Albury-Wodonga, which often receive care across state lines.
“In this context, a federated model of SDPR – capable of supporting cross-jurisdictional data exchange while respecting local governance structures – may represent a more scalable and nationally interoperable solution. This approach would balance statewide service integration with national unity, enabling real-time, patient-centred care regardless of geography,” they wrote.
Long-term resourcing continuity is undefined, and this is a risk to value realisation
Australia’s health data assets continue to rely on short term, project-based fundings. The report authors said there needs to be a longer-term funding strategy to safeguard the sector and unlock future value.
The Australian government’s National Collaborative Research Infrastructure Strategy has advanced national collaboration and improved accessibility to health and medical research data. However, the sector is also resourced by a patchwork of sources, including the Australian Research Council, state and territory governments, universities, publicly funded agencies, industry, and the private non-profit sector.
“Although this diversity reflects strong demand and capability, it also introduces complexity, inconsistency, and volatility,” the authors wrote.
They recommended a sustainable model that has multi-year funding commitments, greater alignment between jurisdictions, active engagement of private and philanthropic capital and a clear national roadmap.
“Embedding these elements within a national health and medical data blueprint will enable Australia not only to safeguard its current assets but also to harness health and medical data as a long-term driver of system transformation, innovation, and economic growth,” they wrote.
Health and medical data are critical assets for Australians’ health and the nation’s economic prosperity. Report author Nirasha Parsotam, the DHCRC’s healthcare strategy and innovation consultant, said national approach was crucial.
“Siloed systems and ambiguous data pathways across jurisdictions and organisations create bottlenecks that slow research, hinder innovation, and delay the translation of knowledge into practice.
“Overcoming these challenges requires a streamlined, nationally coordinated approach to unlock faster and more impactful use of our national data assets. Without unified national coordination, Australia risks engineering complexity instead of coherence – duplicating capabilities, fragmenting impact and losing momentum,” Ms Parsotam said.