Leading Evidence & Insight

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We hear from thousands of people every month so we know we can tell powerful stories about your lives and what needs to change, backed by facts and statistics. But we also know that we are not reaching every part of our community so cannot reflect the full range of experiences. We are making it our mission to fully understand your experience so we can fight for everyone affected by Crohn’s and Colitis.

Group of people in a workshop talking around a table.

The Evidence and Insight programme will identify gaps in the current knowledge of Crohn’s and Colitis and address them. Our aim is to understand the experiences of all those affected by Crohn’s and Colitis, including those from underserved groups.

By ‘evidence’ we mean facts and information drawn from research, data analysis and evaluation. ‘Insight’ is where evidence is applied in real-life situations to gain more knowledge from people’s lived experiences.

To view a list of tenders currently open for submission as part of the Evidence and Insight programme, click here: Tenders.

Currently we are funding research to strengthen our evidence and insight into areas such as:

  • Who lives with Crohn’s and Colitis in the UK As you may already know, in 2022 we received the results from a study we commissioned that showed the number of people living with Crohn’s Disease or Ulcerative Colitis in the UK has been vastly underestimated. Read more here. Next, we need to explore in more depth how Crohn’s and Colitis is shaped by factors such as age, gender, ethnicity, location and socioeconomic factors. This work will deepen our understanding of different lived experiences of Crohn’s and Colitis across the UK and lay the foundations for our future work.
  • Understanding diagnostic delays in Crohn’s and Colitis: an evidence review – Crohn's & Colitis UK have commissioned an evidence review to develop an understanding of where and why diagnostic delays occur in Crohn’s and Colitis and to gain insights from how delays in diagnosis have been tackled in other comparative diseases which might help to address diagnostic delay issues in IBD. Click the following links for the full report and an executive summary.
  • The cost of IBD – We want to know the true cost of IBD to individuals, the NHS and wider society. This project will examine if delays in diagnosis of IBD impacts the costs and the mechanisms behind this.
  • The language of pooPeople tend to get very embarrassed when speaking about their bowel movements. It is not something that is part of usual everyday conversation and something people still view as a taboo. We captured insights from a range of people to understand how they talk about poo, pee, and toilets. We were especially interested in understanding the type of language people from different cultures, genders and ages use when discussing bowel movements. You can read more about the findings here or view the executive summary of the report here.
  • Improving diversity in research We’ve recently partnered with ClearView Research to gather evidence that will help us better understand the barriers members of the Black community face when getting involved with research.  You can now read the findings of the report and how we're going to be using this to implement change.
  • Which social and economic factors have the biggest impact? We are funding two projects, one in collaboration with the community engagement agency Egality and the other with the University of Hertfordshire. These projects aim to explore which social and economic factors significantly impact people living with Crohn's and Colitis in the UK. In particular, we are engaging with people from diverse ethnic and socioeconomic backgrounds who are often under-represented in research. The Egality study has been completed, and you can find a summary report of their findings here. The University of Hertfordshire's study is still in progress, and we anticipate that the combined insights from both projects will provide a nuanced perspective on the challenges faced by individuals with these conditions.
  • Study on Crohn's and Colitis Life Experiences - We are commissioning a study with Common Collective to deepen our understanding of the ways that Crohn’s and Colitis are currently affecting the lives of people living with the conditions in the UK. Click here for more information.

By actively expanding our evidence and insight base, we are leading what is known about Crohn’s and Colitis in the UK.


Want to get involved in research?

The best quality research happens when people with Crohn's and Colitis are involved, and you can make a difference at every stage of research.


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Helpline service

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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

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If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

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