AWARE-IBD = Putting People with inflammatory bowel disease (IBD) in control of their care

Crohn’s & Colitis UK

About the project

Crohn’s and Colitis are inflammatory bowel diseases (IBD), which are lifelong conditions. There has been increasing attention on quality of care in IBD, with a drive to move away from traditional, hospital-based rescue approaches towards more tailored, personalised care. 

This project, led by Crohn’s & Colitis UK, brought together people living with IBD, health care professionals and decisionmakers to co-design and drive changes to IBD services in Sheffield.

Over three years, a patient-led IBD quality improvement programme and a patient-led research evaluation have been carried out, putting the patient voice at the centre and embedding a culture of what matters to patients in an IBD service.

Key achievements

A Patient Oversight Committee was established, which ensured the patient voice remained central to the project. There was patient leadership and involvement throughout the redesign of the IBD service and meaningful, genuine and collaborative relationships with underserved local community groups and lesser heard voices in the IBD service. 

Everyone who received IBD care from the Sheffield service was invited to answer the question ‘What matters to you?’. Over 600 people completed the survey and the three most important elements identified were: access, communication and patient-centred care.

A patient-reported experience measure (PREM) was co-designed and used to collect data, via a co-designed patient app, to evaluate the impact of service changes on patient outcomes and experience. The results of this data collection showed that the experience of people attending the service improved significantly during the programme.

A toolkit to support people with IBD to better communicate with professionals in the service was co-designed, and is available in Easy Read and multiple translations. 

A personalised care plan was co-designed with service users, following an online survey and two online workshops. This supports a more personalised approach to clinical encounters and was piloted in clinics.

Changes to the IBD service to improve access to the service were trialled: a nurse-led clinic and a consultant rapid access clinic.

Key reflections and learnings

The key learning from the project was the importance of positioning patients as improvement leaders, working in partnership with local community groups and ensuring service changes reflect the priorities of service users. Naseeb Ezaydi, Research Associate, University of Sheffield, said: ‘Patients were at the centre of the project from start to end. Sharing power and working in partnership with patients led to more creative working and changes that best benefited patients.

‘Engaging with people from a range of communities and backgrounds was imperative for ensuring that service improvements in IBD are accessible, relevant and representative of patient needs and values.’

Vicky Buckley, a member of the Patient Oversight Committee, reflected on the project’s success: ‘This project showed us that it is possible for health care systems to genuinely collaborate with IBD patients to enhance access, personalisation and communication. By working together, we can improve experiences and outcomes for everyone touched by this disease.’

There were challenges, including implementing service change. The team were aware that service change doesn’t necessarily make the job easier for staff. They therefore made sure that any changes fit within existing capacity, to ensure longer-term engagement in a clinical setting.

Sustainability plans

A key priority for the project team going forward will be to build on their experience and lead discussions on how to embed quality improvement processes as sustainable and scalable parts of the service, including the services changes that were trialled as part of the project.

The project team plans to use targeted messaging tailored to managers/policymakers, clinicians and service users, to ensure effective spread of the programme methods.

Advice for others

This project has demonstrated that patient-led, structured, quality improvement processes, can be incorporated into IBD service delivery. The team’s recommendations for quality improvement programmes for IBD care are:

• Service changes must be led by patient priorities and co-designed by people with lived experience. 
• Services should aim to understand what matters to people with IBD and ensure personalised care, good communication and access.
• Patient experience can be measured and embedded in IBD services.
• Listening to underserved patient groups should be undertaken in a meaningful way.
• Form a partnership with relevant stakeholders with a shared goal to improve IBD services. 

Further resources

• IBD toolkit

Contact information

For more information about this project, please contact Naseeb Ezaydi, Research Associated, University of Sheffield.