Clinical case studies

Using IBD Registry reports to improve IBD care at Jenny Lind Children’s Hospital (August 2023)

Marco Gasparetto, Consultant Paediatric Gastroenterologist at Jenny Lind Children’s Hospital in Norwich, explains how working with the IBD Registry has benefitted his team (pictured right).

The IBD team at Jenny Lind Children's Hospital, Norwich. There is a text box over the bottom half of the image with a green background and white text. The text contains a quote from the team. "Besides being good for quality improvement, the Registry tools are also a reliable, well-structured way of systematically recording clinically relevant patient data, of contributing to the national audit as well as to meaningful clinical research."
  1. How have the IBD Registry quarterly reports benefitted your service?

We have regularly incorporated the IBD Registry quarterly reports within our paediatric gastroenterology governance and strategy meetings that are held three times a year. The reports have allowed us to confirm areas of satisfactory performance as well as to discuss aspects requiring further improvement. A recent example is related to recording IBD disease activity scores regularly. As that hadn’t been formally done on each patient’s attendance, we set up a system reminding consultants and clinical nurse specialists to calculate the scores systematically and get them recorded in each patient’s letter.

  1. Are there any insights which have been particularly helpful?

In general, it is very helpful to be able to benchmark our team’s performance against other centres across the country, to both highlight strengths and identify aspects requiring further improvement. The graphs in the initial part of the reports have a helpful visual impact and have been used in our governance meetings to discuss the performance level and areas requiring improvement.

  1. Why is uploading your data and contributing to the IBD Registry so important?

Besides being good for quality improvement, the Registry tools are also a reliable, well-structured way of systematically recording clinically relevant patient data, of contributing to the national audit as well as to meaningful clinical research. A recent example is the PINPOINT study on UK epidemiology of paediatric IBD led by Dr Henderson in Edinburgh, that benefitted from the amount and quality of information accessible through the Registry tools.

  1. How has the IBD Registry supported you?

The Registry has supported our team by providing a helpful database tool for collection of relevant data from our cohort of children with IBD. It has allowed us to monitor our performance and benchmark our practice against other centres in the country. Finally, it has contributed towards clinical research collaborations in the paediatric IBD area.

Improving quality of data at Royal United Hospitals Bath (Nov 2021)

Jess Sowton, IBD Database Coordinator and Administrator at the Royal United Hospitals in Bath, explains why participating in the IBD Registry is important for her team (pictured right).

“The quarterly reports we receive from the IBD Registry have prompted discussions and action plans around how to more effectively engage with data upload and use these insights to improve care.

Photo of the IBD Team at Royal United Hospitals in Bath

It is very helpful for us to have an insight into the numbers of patients we have, their diagnosis and which medications they are prescribed. We hope that once we have a more streamlined method of uploading data, we can start getting quarterly reports that provide a more complete picture of our service.

We recognise the importance of developing and improving IBD care, through expanding the collective knowledge and awareness of the disease, and by being part of the IBD Registry we are able to do this.

By uploading our data, we contribute information that can help provide a snapshot of our IBD service, including the type of IBD our patients have and the treatment they receive, as well as being part of a larger national picture that can support analysis and research into IBD. Although we are facing challenges in uploading data as much as we would like to, we believe that any data we upload can help build up this valuable picture, and as our service continues to engage with the Registry, our contribution will increase.

With limited clinical and administration time, our IBD team has met several times to discuss an action plan for uploading data to the Registry. We came up with the following solutions:

  • Getting in touch with our hospital quality improvement/audit team and training one of these team members to use the database. This team member will be going through our list of IBD patients on biologics, and ensuring that the patient is registered on the database and that their medication history and current biologic is recorded (we are prioritising biologics data first).
  • Once the audit team member is trained, they can start inputting information on biologics reviews, so that the information captured here can accurately reflect the IBD team’s clinical contacts.
  • To help the IBD database administrator in further capturing biologic reviews data, the IBD team of nurses and consultants have begun to forward on copies of clinic letters for patients’ induction, post-induction and yearly review of their biologics, and ensure that clinical scoring is recorded in these letters. This means that the IBD administrator knows when these reviews occur, as well as the clinical scores.

We hope that, with help from the audit team and these new steps to support the IBD administrator, our IBD team will start to gather a more robust dataset for the Registry, and benefit from the valuable information reported back to us.”

Share your clinical case study

We would like to hear from IBD teams about their experiences of participating in the IBD Registry, including how you use the analysis and insights we report back to you for clinical audit and service improvement. We also want to know how we can best support you, for example with data capture or getting the best use out of your data. Contact us at [email protected]