Welcome to the DHCRC Spring Newsletter. Spring is traditionally a time of renewal and growth marking the end of winter’s dormancy.

The tradition of spring cleaning aligns with this symbolism welcoming the energy and possibilities of a new season. At the risk of stretching this metaphor I have been reflecting on the many green shoots we now see from the increased focus and significant funding for supporting digital health infrastructure to underpin digital transformation. There has certainly been much greater attention from federal and state governments on addressing many of our health challenges, growing health demand, and the workforce gap that digital technologies can reduce.

We have seen a lot of great work being done on connecting data with, and for, the consumer. The recently announced health information exchange (HIE) initiatives are good examples of infrastructure being put in place to bring connectivity and interoperability to reality. However, for this to succeed, not only at the point of care but right through to population health planning and enhanced data analytics, work is still lagging in ensuring data fidelity and timely access for research and industry innovation.

It has often been said that “data is the new oil” but it is worth remembering that oil is only useful if you can get it of out of the ground. We have many projects underway where difficulty in accessing data has a significant impact on the outcomes. Waiting up to two years for approval to access data for research is still the experience despite all the rhetoric about the importance of access to data to drive innovation and productivity improvement.

Thankfully there are signs of optimism, our work with the Peter MacCallum Cancer Centre (Peter Mac) is a good example of where integrated data can be such a valuable asset. Here Peter Mac is trialling an end-to-end digital platform from Propel Health AI to securely capture and store its comprehensive pool of de-identified patient data to support research and ultimately improve patient outcomes.

Another project with WA Department of Health, Curtin University and WA Country Health Service has linked WA pathology data from four private pathology providers in WA to hospital administrative data and mortality data, creating a linked data asset to determine the incidence, prevalence, progression and economic burden of chronic kidney disease in Western Australia.

Investing in data analytics provides both social and economic benefits: in this WA scenario, new treatments can slow the progression of chronic kidney disease by up to 15 years and potentially longer if started earlier. While modelling by the research team shows investment in this early detection could yield a net benefit of $10.2bn over 20 years or $45 for every $1 invested.

We have many, many projects underway where this data access and linkage is crucial.  It is one of the reasons for the establishment of our Synthetic Data Community of Practice. This community was formed to advocate and showcase the role synthetic data can play in health research. We were excited to bring this community together at our recent symposium in Brisbane.

While there has been improvement at a process level, access to data is still taking too long and as a core pillar of the DHCRC we will continue to invest in, and advocate for, more streamlined sharing of data.

This edition of our newsletter also profiles some of our work in remote aboriginal communities. I had the privilege of visiting Pirlangimpi in the Tiwi Islands last month alongside government representatives Daniel McCabe and Simon Cleverly, NT Health’s Dr Tamsin Cockayne, and USyd Professor Tim Shaw. The visit marked the halfway point of a project in our ongoing efforts to evaluate how technology can enhance comprehensive primary care in remote Indigenous communities and coincided with the hugely successful Sparked AU Darwin workshop. We are excited to announce the DHCRC has become a Sparked Founding Member.

We hope you enjoy this and the other stories in this edition of our newsletter.

Warm regards,

Annette Schmiede
CEO

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