AWARE-IBD = Putting People with inflammatory bowel disease (IBD) in control of their care Crohn’s & Colitis UK

There have been rapid advances in treatments for Crohn’s disease and ulcerative colitis (collectively known as inflammatory bowel disease or IBD), but unlocking their benefits requires services to fully understand the priorities of those that use them.

Crohn’s & Colitis UK has identified significant shortcomings in the interactions that people living with IBD have with health care services. The UK-wide IBD UK Benchmarking Tool highlighted a lack of education and opportunities for patient engagement, and the need to improve shared decision-making.

This project, led by Crohn’s & Colitis UK with Professor Alan Lobo from Sheffield as Chief Investigator, will create partnerships, led by people living IBD, to design services and deliver improved outcomes. The challenge is to put people with IBD in control of their care by co-designing a structure to tell care teams what is important to them; and making that visible in multidisciplinary team meetings and patient consultations.

The focus will be on solutions to make priorities explicit and to refocus clinical encounters on what is important to patients, their families and carers. This will include using an app designed by epiGenesys to deliver information from people with IBD to their clinicians.

Patients will be trained by the Sheffield Microsystems Coaching Academy to help steer the service improvement. Larger scale patient engagement will run alongside, with all 4,000 patients from the Trust being invited to engage with the project.

Contact information

For more information about this project, please contact Rachel Ainley, Crohn’s & Colitis UK or Professor Alan Lobo, Chief Investigator, Sheffield Teaching Hospitals NHS Foundation Trust.