Involving people with Crohn’s and Colitis

Two people talking and looking at a booklet.

Crohn's & Colitis UK believes that no project or health service will be as good as it could be, without the input of people affected by the conditions.

People living with Crohn’s or Colitis have a unique personal experience and understanding. This wealth of experience plays a vital role in shaping our work and should be just as pivotal to shaping other projects and services.

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What is patient involvement?

It is the involvement of people living with Crohn’s and Colitis in an equal partnership from the beginning to the end of a project. Everyone has their own experiences, and patient involvement ensures that we learn from and understand those experiences, making sure they contribute to plans and decisions. When we say ‘Patient’, we are referring to people with Crohn’s and Colitis. You may also hear this term used alongside 'public involvement', which relates to the involvement of the general population to gather wider views and experiences, as well as 'engagement' which is explained in the ladder below.

Taking part in the IBD Patient Survey webinar was an amazing way to make a difference and help to ensure the reports provided informative and user-friendly information to patients. Being able to be part of this, was personally very rewarding and a privilege.”

Vicky Buckley
IBD Patient Survey report webinar member

Ladder of involvement

There are many ways of getting involved or involving patients in improving healthcare. This pdf diagram aims to help to categorise them. At the bottom of the ladder, the patient is given information and services that they have little or no control over. At the top of the ladder, patients work together with healthcare professionals, managers, and commissioners to ‘co-design’ and ‘co-produce’ health services. The ideal is the blue section at the top, this ladder can be used as a tool to understand and improve patient engagement.

People living with Crohn’s and Colitis have spoken so eloquently about how these conditions have touched every aspect of their lives. What is really striking for me is their rich knowledge of what does and doesn’t work in health services and the potential to use this knowledge in developing new models for the future.

Pauline McNeil

Member of the Scottish Parliament Cross-party group on Inflammatory Bowel Disease