IBD experts forge their own path as policymakers fail to deliver

Australia faces significant gaps in delivering consistent, high-quality care for the 180,000 people living with Inflammatory Bowel Disease (IBD). While individual public and private IBD sites strive to provide best practice care, the absence of robust outcome measures, national standards, and transparent benchmarking leaves patients exposed to inconsistent treatment, suboptimal outcomes, and rising healthcare costs.

To tackle these challenges, non-profit organisation Crohn’s Colitis Cure (CCCure), led by gastroenterologists, has launched IBD-PERFECT*. This sector-first initiative aims to establish a national clinical quality registry and clinical standards, providing a structured framework to transform IBD care across Australia.

“Currently, as there is no dedicated data collection system for outcomes in IBD, we all deliver care ‘blind’,” said Professor Jane Andrews, Gastroenterologist and Board Chair of CCCure. She explained that while individual units conduct audits, there is no visibility of comparisons across sites.

“IBD-PERFECT will enable units to self-assess and see how they compare against other established centres, encouraging discussion and collaborative problem-solving,” she added.

A/Professor Greg Moore, Head of IBD at Monash Health and Director at Crohn’s & Colitis Australia (CCA), told Health Industry Hub, “The launch of IBD-PERFECT will allow public reporting in real time of key performance indicators linked to improved quality of care. Having this data will not only help participating units to undertake highly efficient and accurate quality assurance, but also to support the development of national standards, something highlighted in Crohn’s & Colitis Australia’s 2025 IBD State of the Nation report.”

Beyond benchmarking, IBD-PERFECT is designed to foster a culture of accountability and continuous improvement. Bill Petch, CEO of CCCure, explained that transparent reporting is not about singling out underperformance but about lifting all sites.

“Patients benefit from safer, more predictable care; clinicians get tools to improve outcomes; and the health system benefits from fewer avoidable hospitalisations, surgeries, and emergency visits,” he said.

Leanne Raven, CEO of Crohn’s & Colitis Australia, said “Improving quality of life for people living with IBD requires clinicians and healthcare services to have best practice measurements embedded in everyday care. IBD-PERFECT provides exactly that.”

The program has been developed in collaboration with a national consortium of research, clinical, and consumer organisations, including Crohn’s & Colitis Australia, Gastroenterological Society of Australia (GESA), Gastroenterological Nurses College of Australia (GENCA), and IBD Nurses Australia (IBDNA).

Pharmaceutical partners are backing the initiative. Candida da Fonseca Pereira, Specialty Care Medical Lead at Pfizer, said “Pfizer Australia is proud to support IBD-PERFECT. By establishing national standards and a clinical quality registry, this initiative ensures care is evidence-based, equitable, and transparent across the country.”

AbbVie echoed its commitment, stating: “By supporting national clinical standards and real-world benchmarking, we aim to advance access, equity, and outcomes for all people living with IBD. Collaborative, data-driven action can deliver meaningful change for patients, clinicians, and the health system.”

*Performance Evaluation and Review Framework for Excellence in Clinical Treatment

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