AWARE-IBD: Putting people with Inflammatory Bowel Disease (IBD) in control of their care

AWARE IBD Logo HERO

Crohn’s & Colitis UK are working with local partners in Sheffield, as one of only four projects to be funded under a new Health Foundation programme called Common Ambition. 

The aim of the 3-year project is to re-design IBD services, shaped by those who use them – people with Crohn’s and Colitis. Whilst the project is being delivered in Sheffield, the learning from this project will lead to better outcomes for people who live with Crohn’s and Colitis across the UK. 

AWARE IBD Logo HERO
Last reviewed August 2022

On this project, we are working to re-design services, and deliver improved outcomes for people living with Crohn’sand Colitis.  

To do this, we will be working in partnership with:  

We have designed a structure for people to tell IBD teams what is important to them, and to ensure their voice is heard in appointments. This includes using an app developed by EpiGenysis EpiGenesys that collects information from people living with Crohn's or Colitis and delivers it to doctors, nurses, and other healthcare professionals.

Uniquely, people with Crohn’s and Colitis will be trained by the Sheffield Microsystems Coaching Academy to help steer the changes. Larger scale involvement is running alongside, with all 4,000 patients from the Trust being invited to engage with the project. We recognise that the Crohn’s and Colitis community is both large and diverse. This project aims to represent this community through advocacy support from VoiceAbility, to make sure we are hearing from people with Crohn’s and Colitis of all ages, genders, backgrounds, and ethnicities. Crohn's & Colitis UK are the project lead, and will be supporting with patient involvement throughout, including chairing the Patient Oversight Committee. 

Evaluation will show how, and by how much, putting patients in control of their care improves outcomes. This will be led by the School of Health and Related Research (ScHARR) at the University of Sheffield. 

People with Crohn’s and Colitis are experts by lived experience, so they know what makes a good and bad experience of care. To make real change in the way we re-design IBD services, we need to work with these experts – so that the services of the future are based on what matters to them. This project has the potential to teach us lessons we can use across the UK and is a unique opportunity for thousands of people with Crohn’s and Colitis to get involved and lead to real changes. We’re grateful to the Health Foundation for selecting us to take forward this incredibly important work.


Sarah Sleet
CEO at Crohn's & Colitis UK

Whilst the project is being delivered in Sheffield, we will ensure that the voices of people living with Crohn’s and Colitis across the UK are heard and will share regular news and updates. There will also be opportunities for some of you to get involved, so please keep an eye on this page for these updates and opportunities. 

Project updates

We are excited that as part of the AWARE-IBD project, people with Crohn’s and Colitis have finished designing a questionnaire to measure their experience of using health services. We are currently working on publishing this new Patient Reported Experience Measure and will share this with you soon.

We have recruited someone living with Crohn's disease who is being trained by the Sheffield Microsystems Coaching Academy to help steer the changes to the IBD service. Questionnaires have started being distributed to Sheffield residents. If you receive your Crohn’s or Colitis care from Sheffield Teaching Hospitals, look out for a letter inviting you to participate in the AWARE-IBD study. If you live in Sheffield, you can help us by responding to your letter or by asking your IBD team how you can get involved. Find out more about how you can take part in the study here.

You can also take a look at the projects newsletters below for full updates and an opportunity to meet the team: 

If you are interested in learning more or have any questions, please contact our Health Services Team. 


The Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK. And Common Ambition focuses on partnerships where people, families, healthcare professionals and researchers work together to improve health care.

 

The Health Foundation


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