Patient Engagement

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 personal experience and understanding of healthcare. This wealth of experience plays a vital role in shaping the work of the Charity and improving services for others.

Working towards our five-year strategy, we want to ensure high-quality, sustainable clinical care, as well as early & accurate diagnosis for all. To do this, we aim to ensure that the voice of those living with Crohn’s or Colitis is valued and heard, by supporting patients, and working with IBD services to increase their patient engagement. Patient engagement is key to improving care and has been shown to have positive health outcomes and to reduce health care costs.

Read our position statement on involving people with Crohn’s and Colitis in improving health services and find out more about our commitment to ensuring patient engagement is at the heart of designing, developing and monitoring good IBD services.

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

What is patient engagement?

Patient engagement to us, 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 engagement 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 receiving healthcare.

There are many ways of getting involved or involving patients in improving IBD services. The diagram below aim 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 your patient engagement.

Click here to view the ladder diagram as a larger PDF

For practical tools and resources on how to involve patients in your hospital IBD service, please visit our Patient Engagement Toolkit for Healthcare Professionals.  

To find out more about how you can get involved in improving hospital IBD services, please visit our Patient Engagement Toolkit for people with Crohn's or Colitis.

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