From Australia to the world: democratising data to better understand IBD

Australia-based not-for-profit organisation Crohn’s Colitis Cure (CCCure) has recently launched subscription-based access to its registry of data on patients dealing with inflammatory bowel diseases.

The IBD-focused charity claims to have one of the world’s largest databases of real-time patient-reported and clinical data on IBD, including Crohn’s disease, ulcerative colitis, and IBD-undetermined.

WHAT IT DOES

Its clinical management system, Crohn’s Colitis Care (CCCare), features IBD-specific EMR that facilitates care documentation in near real-time. Holding the largest structured dataset in Australia, it has approximately 300 clinical users and 14,500 patient records, representing over 45,000 clinical encounters and about 30,000 patient years. Introduced in 2018, the EMR is available at the point of care and continually refreshes with every patient and clinician interaction. Additionally, it can be used as a guided practice tool, unlike generic EMRs, CCCure claims.

The system also features a consumer portal where patients can self-report and share their health information with clinical teams. 

Operating as a stand-alone, cloud-based system that is accessible via web browsers, CCCare can generate care plans and consultation letters, which can be uploaded to other clinical management systems or emailed to clinicians anywhere. 

Patient-reported and clinical data are also linked to a clinical quality registry (CQR) where it is automatically de-identified/anonymised. Work is in progress to include biological data in the system. 

CCCare is now used in over 20 IBD clinics in Australia and New Zealand with 10 more in the process of onboarding. It is also being evaluated for adoption in healthcare settings in the United States, Europe, Japan, and the United Arab Emirates.

Recently, CCCure partnered with major pathology vendors to enable the live integration of pathology results into CCCare. The company is also arranging the data output to the Australian government’s My Health Record and direct EMR integrations with major hospitals. 

WHY IT MATTERS

Cases of IBD are on the rise. In 2019, nearly five million people were living with the disease, jumping from three million over the past 30 years. Within the same period, cases in Asia showed an increasing trend.

With no known cure, IBD patients will require specialist, multidisciplinary care – and for a lifetime. Efforts have been rolling to find personalised, targeted and effective therapies for IBD. For CCCure CEO Bill Petch, the key to this is access to real-world IBD data and insights. 

“IBD is emerging in parts of the world and demographics it has never been seen before, so equity of access to proven therapies and the need for a more personal, patient-focused approach to care is crucial, in Australia, New Zealand, and globally,” he said. In Australia, the disease may affect up to 300,000 people by 2030. 

CCCare, Petch continues, can provide “insights that would normally be difficult and costly to access.” “Rather than keeping it locked away, we’ve opened it up so we can improve IBD care right now.”

As it opens its big database to the world, CCCure employs a range of measures to protect patient and clinical data, including multi-factor authentication, role-based security, Azure Active Directory integration, HTTPS access, row-level security, dynamic data masking, transparent data encryption, and comprehensive logging and reporting of user actions. It also has geolocated cloud storage, undergoes annual penetration testing, and segments identifiable data from sites. Moreover, it has strict protocols to detect unusual usage patterns.

The company is currently in advanced discussions with commercial partners and hospitals around the world for a subscription to its IBD registry. A major pharmaceutical company recently made the first subscription to CCCare data for R&D. 

MARKET SNAPSHOT

Initiatives have been made across the world to transform data into insights that will lead to more effective strategies for managing IBD. Israeli startup CytoReason, for instance, has partnered with Swiss pharma Ferring Pharmaceuticals to find new treatments for IBD. They are building cell-centred disease models powered by CytoReason’s AI and leveraging public and proprietary molecular data to address IBD at the cellular level.

Meanwhile, CCCure acknowledges the potential of its “versatile” clinical management system to be adapted to other disease pathways in the future. “[W]hile our focus remains on optimising IBD care, we recognise the potential for our model to extend its impact to other healthcare domains in the long term.”

ON THE RECORD

“Real-time access to data and insights is pivotal in revolutionising IBD management towards personalised and targeted approaches. The conventional timeline of approximately 17 years for research to translate into routine care is impractical for patients needing optimal care today. CCCare’s approach, with its continuous audit output, accelerates the integration of cutting-edge knowledge into clinical practice, empowering healthcare providers to deliver more effective and tailored care immediately. This not only enhances the quality of care for individuals with IBD but also advances our collective journey towards finding a cure. The urgency of optimising care now and being instrumental in the pursuit of a cure underscores the significance of real-time data accessibility in transforming IBD management,” said Jane Mary Andrews, board chair of CCCure and clinical professor at the University of Adelaide School of Medicine.