A major study has reduced hospital admissions and improved care for people with Crohn’s disease and ulcerative colitis by focusing on what is important to patients.
The AWARE-IBD project, a three-year initiative led by Professor Alan Lobo at Sheffield Teaching Hospitals NHS Foundation Trust, reshaped inflammatory bowel disease (IBD) services based on patient feedback.
Professor Lobo said: “Inflammatory bowel diseases significantly impact a person’s quality of life and wellbeing. Through the AWARE-IBD platform, patients shared experiences and shaped efforts to improve services in the areas most important to them—access, personalised care, and communication.”
Crohn’s disease and ulcerative colitis are the most common forms of IBD, affecting an estimated 500,000 people in the UK and requiring lifelong management.
Over 600 patients at Sheffield’s Inflammatory Bowel Diseases Unit participated in a ‘What Matters to You?’ survey and co-designed a national toolkit to enhance communication with healthcare teams.
Andy Selman, 63, who has Crohn’s, said: “The standard of care, diagnosis and treatment has been excellent, but it’s the very positive contribution to the quality of my life, which is not always measured as part of a medical process, that has made a difference to me.
Mr Selman, who is from Sheffield, added: “With my symptoms under control, I have more energy and freedom—now I can go on long walks in the Peak District which I find really good for my physical and mental health.”
The study highlighted that many patients struggle with delayed diagnoses, poor access to specialists, and lack of continuity in care.
Researchers also worked with community leaders to address inequalities in treatment, particularly for underserved groups who are more likely to be hospitalised.
The challenges faced by patients included language difficulties, mental health stigma, poor continuity with GPs, and cultural obstacles.
Professor Lobo added: “Our work has been nationally recognised, which is great for Sheffield. Understanding the challenges underserved communities face—like communication and stigma—is crucial to improving care.”
The study’s results will now be used to shape IBD care across the UK, influencing national healthcare policies and improving long-term outcomes for patients.