The journey of patient data at the IBD Registry – World IBD Day 2023

May 15, 2023

World IBD Day on 19 May provides an opportunity to bring more awareness to Inflammatory Bowel Disease (IBD).

Inflammatory bowel diseases are long-term conditions, so collecting information about how people are affected over time is important to help improve treatment and care for people with IBD, and support research into IBD.

For World IBD Day 2023, we’re providing an insight into the journey that your health data can take when you join the IBD Registry, from supporting people with IBD and hospital teams, to involvement in research.

Rachel, IBD patient

Rachel, a white woman, is smiling in the photo. She has short ginger hair and blue eyes. She is an IBD patient.

I was diagnosed with ulcerative colitis in 2000 – which was then reclassified as Crohn’s disease after I developed a perianal fistula eight years later.

Throughout my 20-plus years of living with inflammatory bowel disease, the need for better patient engagement and a centralised information bank driven by patient data have struck me as essential to the future of IBD research. I was hugely supportive when I learned through my IBD clinic at Guy’s & St Thomas’ Hospitals a few years ago that the IBD Registry had been established.

I think sometimes as patients living and breathing the daily grind of IBD, we can forget that we have so much to contribute to research into Crohn’s disease and ulcerative colitis – and this is something very positive, I believe. We are, quite literally, sitting on a pot of research gold! By sharing our information into a centralised IBD database, the combined might of UK IBD research can gain great insights and move this complex field forward.

Over the last two decades of living with IBD, I have witnessed progress being made both in terms of disease knowledge and a more patient-centred approach – and this underpins the fantastic work the IBD Registry is doing. Joining the Registry is something we owe to people diagnosed with IBD yesterday, today and tomorrow. Signing up is quick and easy – I encourage all IBD patients to do it!

Becky, Lead IBD Nurse Specialist, Torbay Hospital

Becky, a white woman, has short blonde hair and is wearing pearl earrings. She is smiling and wearing an NHS lanyard and dark blue nurses uniform.

We use the IBD Registry to capture as much patient data as we can using clinic letters and virtual/telephone contacts. Unfortunately we don’t have the capacity to use the Registry in real time, so most data input is retrospective. However, it has allowed us to have a good handle on our patient caseload, the worklists enable us to provide timely colonoscopy surveillance and the data extracts have been used to contact our at risk Covid cohorts. In addition, we use the database to identify patients for clinical trials, quality audits and the biologics audit. We also give patients the Registry materials and QR code to join the Registry.

Fred, Head of Health Informatics, IBD Registry

Becky, a white woman, has short blonde hair and is wearing pearl earrings. She is smiling and wearing an NHS lanyard and dark blue nurses uniform.

In my role at the IBD Registry, I work with our analytics team to gain insights from the data that patients share with us. In my time with the organisation, I’ve been fortunate to see so much growth, not just in terms of the volume of data we’re able to work with, but also the strength of the team, and analysis we’re able to perform. It’s an exciting time to be involved in health data, and a highlight of my role is being able work with prominent clinicians and researchers to help use our data to make a positive impact for people living with IBD.

At the Registry, we’re acutely aware of the importance of keeping patients’ data safe. We pride ourselves not only on the security of our data storage, but also the thoughtful, appropriate use of the data. With a chronic condition such as IBD, the collection of longitudinal data (numerous datapoints across time) is crucial. Many patients use advanced therapies (sometimes referred to as “biological therapies”), and the sequence in which these are utilised can affect the efficacy of the therapies. Being able to analyse longitudinal data from patients can give insights into which therapies work more effectively for some people, and which work more effectively for others. We’re also involved in quality improvement, providing measures of feedback to IBD teams to help enable them to provide the highest quality of care for their patients.

Stephen, one of our clinical leads, IBD Registry

Becky, a white woman, has short blonde hair and is wearing pearl earrings. She is smiling and wearing an NHS lanyard and dark blue nurses uniform.

After retiring as an NHS gastroenterologist, I eagerly grasped the opportunity to join the IBD Registry to try to smooth the process of collecting data from hospital teams providing care to their IBD patients and to provide a clinician’s perspective on the data analysis we perform and the statistics we report back to IBD services on the quality of their care.

The Registry holds incomparably more information about the care received by people with IBD than any other source of data in the UK. Thanks to patients giving their consent for this information being used in research, we can construct suitable questions and, once approved by the research oversight committee and Patient Advisory Group, perform analyses to answer these questions, without the need to build bespoke data collection systems or recruit limited numbers of IBD services. For example, examining the length of courses of corticosteroids to assess how well guidelines are being complied with or how well-tolerated new biosimilar drugs are.

By collecting sufficient data about the care and treatment of enough people with IBD, we look to a time when we may be able to help clinicians and patients to match the best treatment choice to the patient’s particular situation.

You can join over 4,500 people with IBD whose data is helping us to bring together information about the treatment and care of people with IBD across the UK here.

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