The IBD Registry has closed current activities while we are in discussions through 2024 about possible transition to an NHS organisation. 

Milestone HES reports released!

Jan 11, 2018

Data and reporting

 

Milestone HES reports sent to sites this week

Earlier this week, HES reports were sent to all Registry sites that have submitted data to NHS Digital, fulfilling a long-held Registry aim to make information work better for patients, clinical teams and the NHS. These reports represent an exciting milestone; they use routinely collected hospital episode statistics (HES) data collected in England between 2011 and 2016 to supplement the clinical data collected by sites, and benchmark individual site data against other English NHS trusts.

Novel algorithms developed by the University of Liverpool’s Biostatistics Unit, led by Keith Bodger, have allowed the data to be interrogated in ways that recognise the diversity of coding patterns associated with unplanned care. In addition to analysing admissions with a primary diagnosis of ulcerative colitis or Crohn’s disease, the team has captured the substantial additional burden of unplanned admissions for IBD patients where primary diagnoses relate to symptoms, signs, complications or associated conditions. They have tracked IBD patient journeys over time to analyse key end-points such as surgery and mortality.

Stuart Bloom and Fraser Cummings commented: “We have to acknowledge and thank Crohn’s and Colitis UK who have supported this superb work by the University of Liverpool team through a health services development award.”

Our plans for the next IBD Registry HES report will focus on Crohn’s disease, and introduce ‘linkage’ between locally-collected Registry data and HES data for patients on biological therapies. We hope you find the content of the reports interesting, and look forward to your comments and suggestions for the next iteration.

Please email [email protected] with questions, comments or suggestions on the HES reports.

This infographic contains a summary of the national level data contained with the HES reports.

Data submission deadline

The next data submission deadline is Friday 26th January 2018. If you need any support please don’t hesitate to contact the IBD Registry team at [email protected]. The deadline for Q4 will be Friday 30th March 2018.

Other news

IBD Registry featured in Gastrointestinal Nursing

IBD Specialist Nurse, Pearl Avery, has had an article published in Gastrointestinal Nursing (GIN) on the importance of capturing patient data electronically, and how the data enabled a successful business case to the CCG. Pearl and her team at Dorset County Hospital tracked helpline contacts electronically and produced a table showing the number of visits saved and the associated financial saving. When the hospital switched from a biologic to biosimilar they used the savings to fund another 0.6 WTE IBD specialist nurse. The team were also able to demonstrate that their patient cohort was much larger than previously assumed, and this data allowed them to secure the additional nurse hours indefinitely.

New IBD Registry partnership

The setup of the new Registry organisation in partnership with the BSG, RCP and Crohn’s and Colitis UK is progressing well, and we’ll update you with more details soon. In the meantime, it’s business as usual as we plan ahead for the next quarterly reports and other projects. Please continue your excellent work with data entry, and we look forward to your feedback on the HES reports.

Resources for sites

The Field Support Programme has been welcomed by clinicians during its first two months. The aim of the programme is to identify local barriers and remove them by making appropriate resources available. To date, field-based personnel from the 5 participating pharmaceutical companies have been able to support IBD teams in 22 trusts.

For more information about the Field Support Programme visit our website. If you’re struggling to implement any aspect of the IBD Registry please contact [email protected] to see if we can arrange a visit from a member of our field support team.

With our thanks for your continued contribution to the IBD Registry,

Dr Stuart Bloom,

IBD Registry Chair

Dr Fraser Cummings,

IBD Registry Clinical Lead

Follow @IBDRegistry

Find out more about…

Our studies and research