Health data without borders: Can reform go beyond rhetoric?

Research Australia and the Digital Health CRC (DHCRC) have ramped up calls for a nationally coordinated approach to health data, co-hosting a recent workshop that brought together key stakeholders across government, industry, academia, and the broader health and medical research ecosystem.

The workshop, focused on unified national data capabilities, addressed how improved coordination could underpin more effective data-driven healthcare, accelerate innovation, and boost both health outcomes and economic performance.

Stakeholders examined what a nationally coordinated system could look like, where it would be best housed, and how it could align with major policy and reform agendas – including the National Health and Medical Research Strategy (National Strategy), the Strategic Examination of R&D (SERD), and the National Research Infrastructure Roadmap (NRIR).

While discussions about data interoperability are far from new, Research Australia and DHCRC are taking a different tack.

Nadia Levin, CEO & Managing Director, Research Australia told Health Industry Hub, “What sets our approach apart is the combination of Research Australia’s ability to bring the whole health and medical research and innovation sector together along with and DHCRC’s digital health expertise. Together, we’re tackling entrenched barriers – technical, structural and cultural – by advancing governance reform, data access frameworks, and workforce capability.

“We’re working closely with government to align the current reforms across our sector to elevate shared priorities. Our aim is to position interoperable health data as essential national asset.”

The workshop convened 25 representatives from 18 organisations. Stakeholders identified systemic barriers that continue to limit progress, including the lack of national leadership, fragmented and difficult-to-discover data sets, access delays, and the absence of a long-term, consolidated investment strategy. There was broad recognition that without clear national stewardship, Australia risks falling short of unlocking the true value of its health and medical data.

The stakeholder discussions also echoed findings in the Productivity Commission’s Leveraging Digital Technology in Healthcare research paper.

Adjunct Professor Annette Schmiede, CEO of DHCRC, said “Our recent roundtable with Research Australia reinforced the urgency of the Productivity Commission’s message. It brought diverse stakeholders together to move the conversation from policy rhetoric to coordinated action. The themes of interoperability, data sharing, and aligned investment are not new – but what’s different now is the shared commitment for a unified nationally connected and productive health and medical data system that works for patients, clinicians, and researchers alike.

She further added, “This vision is aligned with the strategic priorities of the Department of Industry, Science and Resources and the Department of Defence, both of which recognise the importance of sovereign digital capability. To realise this ambition, investment in secure, standards-based, and coordinated national infrastructure is no longer optional – it is foundational.”

There was strong consensus among attendees: the time for talk is over. A bipartisan, nationally endorsed framework is essential to steer long-term investment, drive interoperability, and ensure Australia’s health and medical data assets deliver world-leading outcomes across care, research, and innovation.

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