Story of the COVID-19 IBD Risk Tool

Winners of the (01 December 2020) HDR UK Alliance Symposium 2020 Lightning Talk!

A great idea and tool that is easy to use and gives reassurance at this time

very reassuring

very helpful

The story starts in March 2020…


The story starts in mid-March of this year, when COVID-19 pandemic was taking hold in the UK . The Government asked certain professional medical organisations, including the British Society of Gastroenterology (BSG), and asked them if they could help to identify all patients with Inflammatory Bowel Disease who were at high-risk from COVID-19.



The BSG quickly prepared a risk assessment grid for IBD patients. The problem was then how to identify the patients in order to assess them.  The hospital teams were trying to do this but very few NHS Trusts have this kind of information in one place.  NHS Digital and others were also working on this (and the Registry was working with NHS Digital too) but didn’t have the right information, in one place, either.


And so the COVID-19 IBD Risk Tool was born….

The answer as we saw it was to turn the problem round: get the patients themselves to do the assessment. The patients knew all about themselves, if the risk grid could be delivered to them in an easy-to-use way.  We decided that we would do this by building a self-assessment tool for people with IBD based on delivering the BSG’s risk grid in a simple way.

Takeup by people with IBD was enormous. …

We started the Risk Tool the morning after the BSG called, and 8 days later it was ready, with full launch 2 days later on the 1st April. The Tool allowed people with IBD to assess their risk from COVID- 19 and gave them a downloadable assessment at the end.

By the end of the first week in April, over 16,000 assessments were complete with over 27,000 in progress.  By the end of August, over 34,000 people with IBD in the UK had completed a self- assessment.

Then making the information available to their clinical teams …

The second piece of the solution was that the healthcare team caring for the patient would find this patient- and risk- information valuable, so we also had to build in a secure way of returning a list of patients and their assessment health data to each hospital involved. 

By the end of July, 118 hospitals were signed up (authorised) for secure access to collect their patients’ supplied data, which they could then add into their own clinical care plans

The feedback from people with IBD who had used the Tool …

We also had a feedback channel, which we envisaged being for things like ‘my hospital isn’t on your list’.  What weren’t expecting was a wave of compliments saying how much the self-assessment tool had been appreciated.

We had set out to build a risk identification tool but it turns out we built a patient empowerment tool – a great result.  And it’s still in use today!

To find out more and press enquiries

We’re happy to share the story of what we did and what we achieved- please get in touch!   Our contact form is below, or you can use our standard comms@ email address.

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Thank you to our sponsors and partners

This IBD Risk Tool was made possible by the financial support of:

It was also made possible by the collaborative support of:

IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.