Report: Blueprint needed for health and medical data ecosystem

A comprehensive report by the Digital Health Cooperative Research Centre (Digital Health CRC) on the state of the Australian health and medical data ecosystem argues that, to unlock Australia’s potential as a leader in data-driven healthcare, an ambitious, long-term, unified blueprint is needed. Titled ‘Health data is a national asset: observations into unlocking the value of Australia’s health and medical data for research, improvement and innovation’, the report maps the key stakeholders, alliances and enablers that currently shape the health and medical data landscape.

“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,” Digital Health CRC CEO Annette Schmiede said. “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.” Schmiede also said that Australia’s health data holds enormous value, but is underused — the report’s findings intended to present a starting point to shape a shared vision and way forward to unlock this value.

Five strategic observations

Five key strategic observations are defined in the report, these are that:

1. there is an absence of a visible, unified, national health and medical data blueprint, which limits accountability, coordination, shared commitment to public good outcomes and investment sustainability;
2. disconnected infrastructure and access points have limited discoverability — and to unlock its value for research, innovation, and policy, amplifying discoverability of health data is critical;
3. national stewardship will provide an opportunity for strategic consolidation — with, after years of investment and fragmented growth across diverse initiatives and strategies, the next phase requiring consolidation and alignment under unified oversight before expanding further;
4. person-centred data infrastructure is under-developed — to build trust and unlock the full value of digital health and consenting for health and medical data, consumers must be able to see how their data improves their own health and wellbeing; and
5. there is a risk to value realisation with long-term resourcing continuity undefined — that a sustainable, long-term funding model is essential to maintain momentum, safeguard existing infrastructure, and unlock future value, and this funding model should be embedded within a national health data strategy.

“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,” said Nirasha Parsotam, report author and Digital Health CRC Healthcare Strategy & 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.”

This report builds on earlier Digital Health CRC reports — including: ‘Flying blind 2’ and ‘A call to action for a national data governance framework’ — as well as a recent virtual roundtable co-hosted with Research Australia that identified persistent barriers to data use, which included fragmented access, lack of interoperability and poor discoverability.

You can read the report here, via the Digital Health CRC website.

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