Improving outcomes for inflammatory bowel disease will depend as much on reforming care delivery as new therapies, with greater transparency, real-time data, and patient-centred models needed to tackle inequities and rising costs.
Australia’s inflammatory bowel disease care system needs to move beyond focusing on treatments and instead redesign how care is delivered, according to the authors of a new editorial published in the Internal Medicine Journal.
They argue that better data, accountability, and consumer-centred models are essential to improve outcomes while containing healthcare costs.
The editorial accompanies a review examining inequities in IBD care in Tasmania and notes that the challenges identified are not unique to one state but reflect broader problems across Australia and other healthcare systems managing complex chronic diseases.
Editorial authors and gastroenterologists Professor Jane Andrews, board chair and medical director of Crohn’s Colitis Cure, and Associate Professor Susan Connor, head of the Inflammatory Bowel Disease (IBD) service at Liverpool Hospital, said medical research had traditionally concentrated on “what” care was delivered, such as drugs and procedures, while paying far less attention to “how” healthcare systems actually provided that care.
They said this distinction had become increasingly important as chronic diseases now accounted for more than half of Australia’s healthcare expenditure.
“IBD care generally around Australia is poorly visible and highly variable, as outlined powerfully in the 2025 State of the Nation (SOTN) in IBD report,” they wrote.
“This is largely a function of the fact that there are no obligatory National Clinical Care Standards for IBD, despite the fact that it affects upwards of 180,000 Australians.
“Therefore, no individual practitioner, no care site is obliged to track or report on even basic aspects of quality care such as steroid use, smoking or the recently highlighted issues of iron deficiency and anaemia in IBD.
“And yet, it is well known in other businesses that what gets measured gets managed – and the converse is true.
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“Fortunately, there is now a mechanism to address this outcome measurement gap in IBD, which can not only show a site how they are performing on key IBD performance measures but also provide benchmarking data among participating sites, but use is voluntary.”
Their comments follow the Tasmanian case study, published in the same journal, that described major workforce shortages, limited multidisciplinary services, diagnostic delays, and inadequate research infrastructure that contributed to inequitable IBD care, particularly in regional areas.
“Tasmania has some of the highest rates of IBD in the world, with high rates of advanced therapy use reflecting a more complex population,” the researchers wrote.
“The landscape of IBD care in Tasmania is marked by diverse challenges, some of which are unique to the state and others shared across regional Australia, all of which we appreciate negatively affects IBD outcomes in Tasmania.
“We formed a multidisciplinary working group from all three health services in Tasmania and identified keys issues facing Tasmanian’s with IBD.
“The issues identified and proposed solutions were guided by Australian IBD reports and care standards, major society guidelines and our experience within the health service.”
The researchers proposed a statewide action plan that included expanding specialist nursing and allied health services, improving telehealth, establishing multidisciplinary teams, and creating statewide research and clinical databases.
However, Professor Andrews and Associate Professor Connor argued that simply increasing staffing would not be enough.
“While Elford et al‘s call for more staff is understandable and appears justified for Tasmania, we must be mindful that there are health worker shortages globally, and newer innovative models of care empowering patients to co-care for themselves must also be explored, as it won’t be practical to continually scale up conventional (staff heavy) care models into the future,” they wrote.
“Fortunately, we also know that many consumers can and will help manage their care needs if we provide them with suitable tools.”
They said a major barrier was Australia’s inability to routinely measure and benchmark the quality of IBD care.
Despite affecting more than 180,000 Australians, IBD has no mandatory national clinical care standards, meaning clinicians and services are not required to report even basic quality indicators such as corticosteroid use, smoking status, or management of iron deficiency and anaemia.
Without systematic measurement, meaningful service improvement was impossible, they said.
They called for widespread adoption of clinical quality registries capable of tracking structure, process, and outcome measures in real time, allowing services to benchmark performance and identify areas requiring investment.
“In the IBD field specifically, our charity, Crohn’s Colitis Cure has recently presented data on the likely return on investment if a real-time national IBD Clinical Quality Registry (CQR) were implemented,” they wrote.
“We are also providing publicly available data on some basic IBD care quality measures on-line to inform national IBD quality care conversations with continuously available information.
“Additionally, a consumer co-designed co-care mobile app to empower consumers between appointments will soon be launched.
“It is hoped that these tools together will ‘move the dial on IBD care’ by providing a real-time, portable, consumer-centric health learning system. Time will tell if it works, and no doubt other innovative solutions will also emerge.”
Home calprotectin testing, self-monitoring of symptoms guided by a traffic light approach, self-performed GIUS, wearables to predict flares, and other approaches were all on the agenda as well, they wrote.
“What is certain is that IBD (and other chronic disease) care needs a paradigm shift in delivery systems,” they said.
The authors also argued that consumers should become active partners in managing their disease through digital health technologies rather than relying solely on hospital-based care.
“Consumers live in the real world, not in our hospitals or clinics,” they wrote.
“Therefore, they need to be at the centre of the design and implementation with appropriate supports.
“Real multidisciplinary care needs to be co-designed and co-delivered with consumers and the financial and clinical outcomes tracked so we can adjust and improve on what works and avoid building in what does not.”
Administrative processes such as appointment scheduling, prescription management, and routine patient communication could also be automated through the use of digital tools, freeing up clinicians to focus more of their time on direct patient care.
Improving disease control would also generate broader economic benefits beyond healthcare savings, the editorial noted.
Drawing on the 2025 State of the Nation in IBD report, the authors highlighted evidence that patients in remission incur roughly half the direct healthcare costs of those with active disease while also remaining better able to work, study, and fulfil family and community roles.
Achieving these benefits would require greater transparency across the health system, including open reporting of service performance.
The authors suggested that introducing national IBD Clinical Care Standards was an important first step, supported by systems that routinely collect and publicly report quality data.
They said the accompanying Tasmanian review demonstrated how workforce shortages, fragmented services, and limited access to multidisciplinary care can translate into poorer outcomes but concluded that the larger challenge is redesigning chronic disease care itself.
“What is now needed are system changes to make everyone accountable for the care delivered, and this requires data visibility,” the authors wrote.
They argued that while medicines and investigations for IBD are well established, the next challenge was ensuring healthcare systems consistently delivered high-quality care through transparent measurement, consumer partnership, and innovative models of service delivery.
“Let’s start now; people living with IBD deserve better – and it would save everyone heartache and money – so where are the real barriers?” they concluded.
