Abstract
Inflammatory bowel disease (IBD) is a chronic condition with no known cure. Continual auditing of patients is an important part of developing and refining therapies, including biologics, for inducing and maintaining remission. Between 2006 and 2016, the IBD National Audit gathered data that showed how services should improve standards to meet patient needs. This was followed by the IBD Registry, a multi-agency initiative to enable local teams to electronically record clinical data at the point of care to benefit patients, clinicians, commissioners and managers. The service integrates with existing hospital systems and uses a patient management system (PMS), a web tool for real-time data collection and a data visualisation tool for biologics. As of 2017, there were 99 participating sites, with data from 31 614 patients. A district general hospital successfully implemented the registry auditing tools, despite initial administrative challenges; the IBD team have used the data to demonstrate the value of the specialist nursing service, expanding it by recruiting another 0.6 whole-time equivalent nurse. The PMS offered more robust tools for monitoring complex, high-cost treatments, such as biologics.
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