IBD’s elevation to a national registry priority proves the power of better data but exposes an uncomfortable question about who should fund the infrastructure behind it.
Last year, in these pages, we argued that Australia’s approach to clinical quality registries had created what we called a “paradox of visibility.”
The proposition was relatively simple. What the health system can see influences what it values, and what it values influences where it invests. But investment itself creates visibility.
Diseases and areas of care that already have well-established data infrastructure become increasingly measurable, strengthening the evidence for further investment. Those without that infrastructure risk remaining comparatively invisible.
We used inflammatory bowel disease (IBD) as a case study.
Less than a year later, that paradox appears to have been borne out.
IBD and gastrointestinal disease, which had not previously been prioritised, are now recognised among Australia’s leading healthcare priorities requiring clinical quality registry development. The report also specifically identifies CCCare as an existing clinical quality registry.
That is a significant change.
But the most interesting question is not why IBD has suddenly become a priority.
It is why it was not one before.
The burden of IBD did not suddenly emerge in 2026. People living with the disease did not suddenly begin requiring expensive medicines, hospitalisation, surgery, specialist care and lifelong disease management.
Nor did the substantial impact on quality of life, mental health and workforce participation suddenly appear.
The disease did not suddenly become more important. What changed was its visibility.
And that should cause us to ask a much bigger question.
What else in our health system are we undervaluing simply because we cannot see it properly?
In the case of IBD, that increased visibility did not happen by accident.
Over recent years, considerable effort has gone into building the infrastructure needed to understand the disease differently. CCCure has created a longitudinal clinical quality registry embedded in routine care, allowing information about disease activity, treatment, outcomes and the patient journey to be captured over time rather than reconstructed retrospectively from isolated encounters.
That infrastructure has, in turn, helped make possible a growing body of evidence about the burden of IBD and the quality of care being delivered.
The State of the Nation: Inflammatory Bowel Disease in Australia report brought much of that evidence together.
It demonstrated not only the clinical burden of IBD, but its substantial impact on hospital utilisation, mental health, workforce participation, productivity and quality of life. Importantly, it also highlighted the opportunities to improve outcomes through better models of care.
IBD PERFECT Australia’s first national benchmarking program for IBD, has taken the next step: moving beyond describing the burden to systematically measuring the quality of care and identifying variation and opportunities for improvement.
This is precisely why the paradox of visibility matters.
Investment in infrastructure creates the capacity to generate evidence. Evidence makes burden and variation visible. Visibility changes how a disease is understood. And, eventually, that can change how it is prioritised.
But this also exposes a more problematic issue. Much of the infrastructure that has helped make IBD visible has been built without government interest or investment.
Clinicians, researchers, patients, charities and industry have effectively had to create the evidence infrastructure necessary to demonstrate that the problem warranted greater attention in the first place.
That is not simply an IBD problem. It exposes a much larger challenge in the way we approach chronic disease.
Australia’s disease burden has fundamentally changed. Chronic conditions now account for the great majority of illness, disability and healthcare utilisation, and that burden will continue to increase as the population ages and people live longer with multiple conditions.
Yet much of our health information architecture remains organised around something very different: institutions, encounters and episodes of care.
We can see the hospital admission. We can see the consultation. We can see the prescription. We can see the procedure.
What we struggle to see is the journey between them.
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For chronic disease, that is increasingly where the important story lies.
This matters because Australia’s response to these information gaps is increasingly technological.
We are investing heavily in interoperability, artificial intelligence, connected health records, data platforms and other technologies designed to bring together information currently scattered across the health system. These developments offer enormous opportunities.
But there is a danger in assuming that connecting more information will automatically give us a better understanding of the patient.
Connecting visible fragments does not reveal what was never captured.
If the underlying system records only episodes of a patient’s journey, connecting those episodes more efficiently still leaves much of that journey invisible.
We may be able to connect the hospital admission to the specialist consultation, the pathology result, the prescription and the procedure. That undoubtedly gives us a better view of what has happened within the health system.
But chronic disease is lived largely between those events.
What happened to the patient’s disease over that time? Did their symptoms worsen? Did their quality of life deteriorate? Were they taking their medication? Were they able to work? Were there signals of deterioration that could have prompted earlier intervention? Did the care they received actually improve the outcomes that mattered to them?
Unless we deliberately capture those things, no amount of interoperability will make them visible.
The same problem applies to artificial intelligence.
AI can find patterns in information at a scale and speed that humans cannot. But it cannot learn from information that was never captured. If the data we provide represent an incomplete view of the patient journey, the insights generated from those data will inevitably reflect that incomplete view.
Potentially more concerning, technology can amplify the problem.
Investment decisions based on incomplete data can reinforce existing allocation biases. Digital systems can institutionalise measures designed around episodes of care rather than outcomes over time. AI can give greater analytical sophistication — and potentially greater apparent certainty — to a view of healthcare that was incomplete to begin with.
Technology can make a good system better. Applied to a flawed system, it can make that system more flawed.
The challenge, therefore, is not simply to connect more of what we already see.
It is to make visible the things that matter but which our current systems were never designed to capture.
And that requires more than technology. It requires infrastructure deliberately designed around the longitudinal nature of chronic disease.
This brings us back to clinical quality registries.
Modern registries should no longer be thought of simply as repositories into which data are deposited so that, months or years later, we can audit what happened.
At their best, they can become part of the infrastructure through which care itself is delivered: capturing information as part of routine care, following outcomes longitudinally, incorporating the patient perspective, identifying variation and feeding information back to clinicians and patients while there is still an opportunity to act.
That is the distinction between using data to describe the health system and using data to change it.
And it is why the Commission’s reassessment of IBD is so important.
The infrastructure that helped make the burden visible already exists. The evidence generated through that infrastructure has helped demonstrate the scale of the problem. And the Commission has now independently recognised IBD as a priority.
Which leaves a rather obvious final question. Who is responsible for what happens next?
For too long, Australia has been comfortable identifying problems through strategies, frameworks, roadmaps and priority-setting exercises without making the sustained investment required to turn those ambitions into infrastructure and measurable improvement.
IBD provides a particularly stark example. Much of the infrastructure that has helped make the disease visible has been built and sustained by a small charity.
That achievement should be celebrated. It demonstrates what can be accomplished when people are prepared to act rather than wait.
But it should not become the model by which Australia funds essential health infrastructure.
There is something fundamentally wrong with a system in which the charitable sector helps build the infrastructure required to make a previously under-recognised disease visible, government subsequently recognises that disease as a national priority, and the same charitable sector is then expected to continue carrying the burden of sustaining the solution.
Government does not need to build every registry, nor should it.
Once we identify infrastructure as nationally important, there must be a pathway to sustainable investment.
Government cannot simply write strategies, identify priorities and then rely on charities, clinicians and industry to do the heavy lifting.
Charity cannot be the implementation strategy for health system reform.
Professor Jane M. Andrews is an internationally recognised Key Opinion Leader in Inflammatory Bowel Disease (IBD). She chairs Crohn’s Colitis Cure (CCCure), co-chairs the global IBD research consortium GLIDE, and her expertise spans clinical trials, translational research, and policy, making her a leading voice in improving outcomes for people living with IBD.
Bill Petch is CEO of CCCure and Chair of the Prince of Wales Hospital Foundation. He is a recognised leader in healthcare innovation and organisational transformation, with a track record in developing national strategies, patient-centred registries, and system reforms that improve equity and outcomes.
