P1254 CCCare: A clinician-led, people-centric model for scalable data-driven Improvement in Inflammatory Bowel Disease care

Abstract

Abstract Background Despite the growing hype around big data in healthcare, real-world implementation of data-driven care models remains limited in chronic diseases like inflammatory bowel disease (IBD), due to fragmented systems, inconsistent workflows, and concerns around privacy, interoperability, and cost. This study describes the development, implementation, and impact of Crohn’s Colitis Care (CCCare)—a world first clinical management platform—as a scalable model for improving IBD care through structured data use. Developed as a not-for-profit social enterprise, CCCare reframes clinical data as a tool to enhance, not burden, routine care. Methods A multidisciplinary team of clinicians, researchers, and people living with IBD co-designed CCCare. Unlike commercially driven digital tools, CCCare is grounded in the day-to-day realities of clinical practice. It positions structured data as an enabler of better care and research. Built through clinical leadership, human-centred design, and iterative feedback, the platform has evolved into a robust Clinical Quality Registry to drive quality improvement, inform sustainable healthcare reform, and unlock scalable efficiencies. Results CCCare has to date captured over 17,000 patient records, forming the largest structured IBD dataset in Australia. Integration into clinical workflows has improved care quality, clinician engagement, and data-driven decision-making. Real-time data capture and feedback loops enable local improvement and generate broader system level insights—informing Australia’s first State of the Nation report in IBD. Key learnings include: 1. Patients share data when benefits are clear; 2. Clinician-led innovation fosters trust and uptake; 3. Social enterprises can deliver scalable, person-centred digital infrastructure. Modelling indicates wider implementation could reduce avoidable healthcare encounters by 12%, and provide health system savings estimated at $121 million. Conclusion By democratising data access and embedding innovation into care, CCCare offers a compelling case study in how human-centred design and collaboration can overcome barriers to digital transformation—offering a replicable model for sustainable, equitable healthcare reform. References: 1. Krishnaprasad K, Walsh A, Begun J, Bell S, Carter D, Grafton R. Crohn’s Colitis Care (CCCare): bespoke cloud-based clinical management software for inflammatory bowel disease. Scand J Gastroenterol. 2020;55(12):1419-1426. doi:10.1080/00365521.2020.1839960 2. Kaazan P, Li T, Seow W, et al. Assessing effectiveness and patient perceptions of a novel electronic medical record for the management of inflammatory bowel disease. JGH Open. 2021;5(9):1063-1070. doi:10.1002/jgh3.12631 3. Barnes A, Carter D, Kaazan P, Walsh A, Connor S, Andrews JM. Novel inflammatory bowel disease (IBD)-specific electronic medical record allows scalable auditing of IBD severity, therapy and complications to show the current unmet need in IBD care. Intest Res. 2022;20(4):506-508. doi:10.5217/ir.2022.00003 Conflict of interest: Petch, Bill: No conflict of interest Carter, David: No conflict of interest Connor, Susan Jane: Grant: Research Support: Abbvie, Agency for Clinical Innovation, Amgen, BMS, Chiesi, Celltrion, DrFalk, Ferring, Janssen, Medical Research Future Fund, Pfizer, South Western Sydney Local Health District, Sydney Partnership for Health, Research and Enterprise, Takeda and The Leona M and Harry B Helmsley Charitable Trust Personal Fees: Ad Boards: Abbvie, Amgen, BMS, Celltrion, Eli Lilly, Ferring, GSK, Janssen, Organon, Pfizer, Takeda Speaker Fees: Abbvie, Cornerstones Health, Dr Falk, Ferring, Janssen, Pfizer, Sandoz, Sydney IBD School, Takeda Educational Support: Dr Falk, Sandoz, Takeda Andrews, Jane Mary: Grant: The work I will present was funded via CCCure. CCCure’s funding sources include grants for research and payments for data reports from Pharma including AbbVie, J&J, Takeda, Celltrion, Falk, Ferring, BMS, Janssen, Pfizer, Sandoz Gearry, Richard Blair: No conflict of interest Walsh, Alissa: Grant: Alfasigma, Helmsley Trust, Johnson & Johnson, Pfizer, Takeda Personal Fees: AbbVie, Alfasigma, Bristol Meyers Squibb, Dr Falk, Ferring, Johnson & Johnson, Lilly, Pfizer, Takeda, Tillotts Lawrance, Ian Craig: No conflict of interest Whitfield, Chrissie: No conflict of interest

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