Case Studies

The Central University Manchester Hospital NHS Foundation Trust failed to meet IBDQIP criteria for having a real time database in 2014. They used this to make a case to hospital management for a means to collect better data for quality improvement. Karen and the team also have some advice on how to approach the data entry challenge of the IBD Registry in order to reap benefits in the long term.

Reducing duplication of effort – Central Manchester

Dr Karen Kemp PhD, MPhil, BSc (Hons), RGN, is Consultant Nurse IBD at Central Manchester University Hospitals NHS Foundation Trust, where she runs a service with around 4,000 IBD patients.

The Manchester Gastroenterology and Hepatobiliary Centre’s goal is to provide excellent care for patients, but the IBD service failed to meet IBDQIP standards in 2014, due to the fact that they had no real time database. They kept track of their patients on a number of different spreadsheets (for steroids, azathioprine, biologics etc) as well as putting information into the IBD Audit web tool; all of which was not only time consuming and difficult to manage, but also meant considerable duplication of effort.

The IBD team presented the IBDQIP results to the Trust Board and within this the case for the InfoFlex PMS was included, which would allow them to have a comprehensive view of the whole service for the first time and provide them with an efficient management tool. The Trust managers approved the funding for the PMS and as additional two more full time IBD nurses in order to improve performance against IBDQIP.

The main barrier was finding time for the clinical team to plan the implementation; but Karen was able to find a champion in the IT department, and this colleague was one of the key people who drove the implementation process internally and made it easy. Although the process ran smoothly as a result of the informatics support, it did take some time from start to finish, due to competing demands on staff time across the Trust and other constraints. At one point, for example, training was delayed due to the junior doctors’ strike.

The main benefit for Karen is not having multiple databases, so not having to double up on work. An example of this is the biologics audit, which used to take a lot of time to complete each year, but now the team will save time by having put the information in as they go along, and they have a good feeling about working towards something together, now that they have one single database for all their patients.

Every team will have their own approach to data entry. At Central Manchester the patients complete disease scoring questions on clinic forms in the waiting area. Consent forms and disease scoring forms are included with the infusion paperwork, and then an administrator enter the scores and the consent into the database.

In terms of clinical information, what works for Karen and her team is to enter data during their virtual biologics clinic; most of the information needed is included in the clinic letter so it’s quite straightforward and not too time-consuming to get the minimum data entered on people being treated with biologics or biosimilars, and they find the system easier than the old biologics tool. They estimate each patient takes around ten minutes to enter.

Karen feels it’s important not to try and get all the information on in one go, but to do it incrementally. Accept that it will take time; it will be really useful to you in the long run.

She commented:

“When we think of the cancer registries and the impact they’ve had on patient care and outcomes over the years it’s really exciting to consider how the IBD Registry will undoubtedly improve the care of our patients; building on the success of the IBD audit, before too long we’ll have the data to prove what works and to demonstrate the need for better resources.”

Pearl Avery in Dorset explains how being part of the IBD Registry and using the PMS has impacted her practice. Since joining she’s noticed a positive impact on her patients’ confidence in the IBD service and has used local data to achieve funding for additional IBD nurse resource.

Local benefits – the Dorset experience

Clinical Nurse Specialist Pearl Avery reports on how being part of the IBD Registry is helping the Dorset IBD team provide a better service to patients.

Responding to patients

The patient management system is giving us the ability to respond to patient queries effectively, since you have access to all the information right there and then. When I get a call on the helpline it’s quick and easy to see the patient’s history as well as colleagues’ comments. This helps us see the whole picture and provide better continuity of care for the patient. You need to remember that often, people have been symptomatic for a while before they contact you for help. Having all the information at your fingertips when they do call boosts patients’ confidence in the IBD service.

In the past when patients phoned we’d sometimes have to arrange to phone back if it was a complex case, to give us time to go through the paper notes.

It also impacts on patient safety as it helps us make the right medication choices, and reduces the chance of our making silly mistakes.

Working more efficiently

The IBD Registry patient management system is easy to use in clinic, and can be adapted to local needs, which is a bonus.

Previously we recorded information in the notes, then had to enter data onto the hospital PAS, as well as write a GP letter, which was time consuming for us, and inefficient for the Trust.

Being able to generate GP letters and patient summaries is a big benefit. We copy and paste these into our local document system, and it’s made our letter production much quicker, so the patient and GP aren’t having to wait weeks to hear about any change to the clinical management of patients.

Being able to update patient records from different locations allows us to be more efficient. The robust infrastructure also helps with continuity when colleagues are away, but also gives us a great way to demonstrate our work; for example we can easily report on the number of helpline calls received, the time it took to respond, and the number of clinic appointments or A&E visits saved.

Planning and resourcing the service

Once we’ve registered all our patients we’ll have a clear picture of our population, which will allow us to resource effectively; for example, by making sure we’ve got sufficient nurse specialists to meet the IBD Standards. Up to now we’ve made an estimate based on our catchment population and the average incidence of IBD in the population to corroborate the data laboriously recorded in a spreadsheet. Being part of the Registry will not only allow us to define our population more accurately but also compare our incidence and outcomes with services in other parts of the UK.

Pearl used Registry data to track the number of IBD patients in her local catchment population. She then used this to make a business case to the CCG which has given them the necessary funding to take on an extra 0.6 whole time equivalent IBD nurse and to achieve funding for the helpline for the first time in 20 years.

I can see benefits for the local health economy too: care is less expensive when patients are well managed, and you can only do that with a well-run service. The Registry has helped us to streamline the service, freeing up time from audit for care.”

Tracey Shaul in Northampton General Hospital explains how utilising the funding from a data entry grant has allowed her team to expand their database which has had a positive impact on services.

Northampton General - data entry grant

Northampton General has an estimated IBD patient population of 1,500-2,000. Working alone, Tracey Shaul, the IBD clinical nurse specialist was unable to backfill historic data onto the Registry system. After signing up to the 2017/18 IBD Registry Biologics Audit – part of NHS England’s Quality Accounts list – data entry on the Audit key performance indicators (KPIs) became a priority.


In an endeavour to increase the size of their IBD team, Tracey submitted several business cases over 3 years. An additional IBD clinical nurse specialist (CNS) and admin support started in the summer of 2017.


An industry funded data entry grant sponsored 50 additional hours of Tracey’s time, allowing her to work most Saturdays between May and August. This has enabled the backfilling of 92 biologics patients from 2016 (50% of the biologics population). With assistance from Mark Allan, the IBD Registry Data Manager, the data was successfully uploaded to NHS Digital in September. The IBD team will receive a quarterly report from the IBD Registry, containing the data they submitted. This will inform them about their IBD population and allow them to make service improvements.


Tracey and her new colleague plan to have a session each week dedicated to audit and research. The new IBD CNS has been able to enter biologics patients prospectively since July. The additional administrative support will be trained to enter demographic data onto the Web Tool. The team are convinced that as they gather more patient demographic and biologic data, they will be increasingly able to review and improve their service, and participate more easily in research studies.


Previously, Northampton General lacked the infrastructure to perform rigorous colonoscopy surveillance on their IBD patients. Now that Registry data is being entered, over the next 12 months, the team will be able to address this governance issue, so the IBD Registry is also facilitating a process for colonoscopy surveillance, which can be scheduled and flagged to GPs.


Tracey recommends starting small and focusing on the data that matters to you at a local level.

Find out more about:


Latest News

Could your IBD service improve?

Continuing its mission to improve the care that people with IBD receive, the Royal College of Physicians is offering IBD teams an opportunity to participate in a new quality improvement collaborative, consisting of three 1-day learning sessions and supported action...

read more

IBD Registry has a new home

Following the establishment of IBD Registry Limited as an independent not-for-profit company, we have moved offices to: The IBD Registry The Ebbisham Centre 6-7 Derby Square EPSOM KT18 8AG Telephone (unchanged): 0203 393 3969 Contact (unchanged):...

read more

We’re at BSG 2018

If you’re coming to the BSG Annual Meeting in Liverpool next week, do come and say hello to us – we’re at stand B58 in the exhibition.

read more

IBD Registry’s GDPR special addition

As we’re sure you know, the General Data Protection Regulation (GDPR) comes into force on 25th May.

This newsletter is to let you know what’s changed at the IBD Registry to be compliant with the new regulations.

read more

A warm hello from Liz, our new CEO

I have been on board as the CEO of the IBD Registry for just two weeks now, but it has only taken that short time to get a real sense of the goodwill that people have for the Registry, as well as the dedication of the clinical teams in entering data, and the hopes and...

read more