Australia's fragmented health data ecosystem is hampering research potential and innovation opportunities that could significantly benefit healthcare professionals and their patients, according to a report released by the Digital Health Cooperative Research Centre (DHCRC).1

The report, Health data is a national asset: Observations into unlocking the value of Australia’s health and medical data for research, improvement and innovation, is the result of a strategic mapping exercise that analysed 75 entities across Australia involved in health and medical data as users, contributors, or beneficiaries. It identifies critical gaps in how the nation manages its vast repositories of health information, from electronic health records and genomics to wearables and clinical research data.

“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,” said DHCRC CEO Annette Schmiede in a statement announcing the report. “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 healthcare improvement and innovation.”

The report warns that “the cost of inaction is not theoretical – delayed research, duplicated infrastructure investment, and missed opportunities for innovation represent real and growing losses to public value”.

COST OF FRAGMENTATION

When properly coordinated, health data has the power to deliver personalised and predictive care tailored to individual needs, accelerate research and innovation from discovery to impact, improve system efficiency through real-time operational insights, and support data-driven public health and policy decisions.

However, fragmentation leads to missed opportunities with real economic consequences. And despite Australia holding world-class data assets, including longitudinal cohorts, clinical registries, genomic datasets, and secure research environments, the DHCRC asserts that these resources remain under-leveraged due to persistent barriers.

The DHCRC identified five critical strategic barriers that directly impact how healthcare professionals could leverage data for research and improved patient outcomes. These include the absence of a visible national blueprint, limited discoverability due to disconnected infrastructure, opportunities for strategic consolidation, underdeveloped person-centred data infrastructure, and undefined long-term resourcing continuity.

“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,” observed report author Nirasha Parsotam, DHCRC Healthcare Strategy and Innovation Consultant.

“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,” she added.

THE OPPORTUNITIES

With data underpinning world-class, sustainable healthcare, biomedical research, and innovation, the report says Australia’s opportunity “lies in transforming diverse data – ranging from electronic health records and genomics to wearables and clinical research – into actionable insights that directly benefit patients, providers, policymakers, and researchers”.

“The convergence of artificial intelligence and biotechnology presents unprecedented opportunities for healthcare innovation, from automated screening programs to predictive analytics for disease progression. However, without unified data infrastructure, individual practices and research institutions are working in isolation rather than contributing to a collective knowledge base,” the report states.

“Despite extensive activity and capability across the system, the absence of a shared national roadmap and stewardship continues to dilute progress and impact.

“This is not a challenge of ambition, expertise, or intent – but one of alignment, sustained investment, and coordinated leadership.”

The report builds on previous DHCRC publications, including Flying blind 2 and A call to action for a national data governance framework, which identified persistent barriers including poor discoverability, fragmented access, and lack of interoperability.

The DHCRC said for Australia to set the benchmark in the use of health data, collaboration is required across government, service providers, researchers, and industry. Additionally, progress must occur within Australia’s existing legislative frameworks, including the Privacy Act 1988, the My Health Records Act 2012, and proposed Privacy Act reforms, which establish foundations for responsible data collection, sharing, consent, and secondary use in both clinical and research contexts.

Reference

1. Digital Health Cooperative Research Centre. Health data is a national asset: observations into unlocking the value of Australia’s health and medical data for research, improvement and innovation. Available at: digitalhealthcrc.com/wp-content/uploads/2025/08/FINAL_Health-Data-is-a-National-Asset.pdf. [accessed August 2025].