In 2018 Australian researchers in digital health cited the many barriers hampering our world class health, medical technology, and pharmaceutical sector from delivering solutions that benefit Australia and Australian healthcare consumers. They suggested that Australia lags other countries such as the USA and UK by not having a consistent, clearly documented national information governance framework. They issued a call to action for a streamlined approach to information governance that embeds privacy, security, and confidentiality by design.

The Digital Health Cooperative Research Centre (DHCRC) is in the fortunate position of coordinating and overseeing many complex and unique projects across the spectrum of digital health. Individually, these are often ground-breaking initiatives that require funding, perseverance and focus. When looked at more holistically they provide a unique look into the trends and issues affecting the health sector more broadly.

In this paper we reflect on five recently funded DHCRC projects to illustrate the data integration and interoperability problems researchers continue to face and the strategies and tools that can be used to address them. In reflecting on these projects we are also able to identify the digital health priorities we believe will assist jurisdictions, clinical researchers, technology, health, and aged care providers to better use, share and link data for smarter outcomes for population health and individuals.

Perhaps most importantly, this paper demonstrates that Australia is still weighed down by defensive policies, legislation and mindsets related to information governance and argues for a renewed call for action around information governance.

The DHCRC re-asserts that Australia requires a harmonised set of national health, medical technology, and pharmaceutical research governance arrangements along the lines of those advocated by researchers in 2018; to address the additional compliance barriers created by the myriad laws in each state and territory; and a contemporary capability to present tools and templates compatible with national governance requirements, codes and standards to those looking to use data responsibly and innovate on behalf of Australian healthcare consumers.

The paper calls for immediate support for today’s researchers offering short-term solutions to harmonise data and information governance and longer term, a way forward in building a collective approach to creating a national framework for the governance of data and information.

Read the full paper and recommendations attached to see how these recent real-world initiatives by the DHCRC are uncovering common challenges and highlighting the need for a harmonised and collaborative solution.

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