For the cost of a subscription researchers can access data from 300 clinical users and 14,500 patient records.
Australia-based not-for-profit organisation Crohn’s Colitis Cure has opened subscription-based access to its registry of data on patients dealing with inflammatory bowel diseases, including Crohn’s disease, ulcerative colitis and IBD-undetermined.
CCC’s cloud-based eHealth platform, Crohn’s Colitis Care (CCCare), features IBD-specific EMR that facilitates care documentation in near-real time and is now live at over 20 IBD treatment sites across Australia and New Zealand, including Royal Adelaide Hospital, Royal Brisbane and Women’s, Children’s Hospital Westmead, and St Vincent’s Public Hospital, Darlinghurst.
CCCare has a patient clinical system, with privacy safeguards, through which individual care is managed and ongoing specific structured patient data is captured; a clinical quality registry, where structured, deep and de-identified longitudinal data is captured and can be interrogated to provide specific and targeted insights (and which can be married with genetic and bio-markers from stored samples); and a research database, where extended data with ethics-approved focus sit.
The database 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.
The system also features a consumer portal where patients can self-report and share their health information with clinical teams.
CCCure CEO Bill Petch said opening the database was essential to making life better for the growing number of people globally with IBD – five million at last count, with the trend rising.
“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 could provide “insights that would normally be difficult and costly to access”, said Mr Petch.
“Rather than keeping it locked away, we’ve opened it up so we can improve IBD care right now.”
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, according to mobihealthnews.
Professor Jane Mary Andrews from the University of Adelaide, CCCure’s board chair said real-time access to data was “revolutionising IBD management”.
“The conventional timeline of approximately 17 years for research to translate into routine care is impractical for patients needing optimal care today,” she said.
“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.”