Maximizing the value of the IBD Registry

What did the research look at? 

Information about IBD care can help to improve IBD services, patient care and future IBD research. But most hospitals don’t have the ability to maintain their own register of local IBD patients, and a lot of routine NHS data cannot be easily analysed and interpreted in a useful way. This research aimed to develop and test new ways to capture, link and analyse information about IBD care with the IBD Registry. 

The study had several aims: 

• To find out if it was possible to capture information from patients with IBD using different hospital IT systems including the IBD Patient Management System, IBD Portal, or local recording systems.  
• To develop ways of analysing information routinely collected by the NHS to capture the important medical events for people with Crohn’s and Colitis including diagnosis, inpatient stays, outpatient appointments and emergency visits to hospital.  
• To find out how to link IBD Registry data to the NHS information gathered and produce regular relevant reports for individual hospitals and IBD services. 

• To share relevant information with clinical teams, patients and local commissioners or health boards. 

By January 2019 data for over 76 hospitals was being analysed and shared with local teams in the form of a Quarterly Registry report.  

Conclusion 

This research confirmed that data could be effectively collected from local teams using a variety of IT systems. There was a progressive increase in the data entered into the IBD Registry including information about use of biologic drugs, establishing the Registry as a platform for undertaking national audit. Analysis of routine NHS data allowed the team to accurately find the number of IBD patients attending A&E, outpatient and inpatient appointments. This work highlighted a mis-match between hospital inpatient workload and the provision of IBD nurses to support people in hospital.  The team analysed trends in outcomes of emergency admissions for ulcerative colitis in England over the last decade, finding evidence for a reduction in rates of mortality and emergency surgery – suggesting more timely emergency operations and improvements in emergency care. 

What do researchers think this could this mean for people with Crohn's and Colitis? 

Researchers hope that gathering, analysing and sharing this information will help hospitals to improve services and provide better care for people with Crohn’s and Colitis.  The data collected will also support research into IBD treatments and the safety and effectiveness of medicines. Ultimately this could provide a more complete understanding of Crohn’s and Colitis and the impact this can have on people’s lives. 

Who is leading the research: Dr Keith Bodger, University of Liverpool 
Our Funding: £126,234 
Duration: 24 months
Official title of the application: Maximising the value of the UK IBD Registry for service delivery, audit and research
Tag: IBD registry