AWARE-IBD
Putting people with inflammatory bowel disease (IBD) in control of their care.
91Ö±²¥ CTRU are working with Crohn’s and Colitis UK and local partners in 91Ö±²¥, as one of only four projects to be funded under a new Health Foundation programme called Common Ambition (project number FR-000002444).
The three-year project aims to re-design Inflammatory Bowel Disease (IBD) services, shaped by those who use them – people with IBDs. Whilst the project is being delivered in 91Ö±²¥, the learning from this project will lead to better outcomes for people who live with Crohn’s and Colitis across the UK.
On this project, we are working to re-design services and deliver improved outcomes for people living with IBD.
To do this, we will be working in partnership with
Background
Inflammatory Bowel Diseases (IBDs) are chronic debilitating conditions with unpredictable symptom flares and significant ongoing impact on quality of life and psychological morbidity. This requires long-term therapy including immunosuppression, timely treatment changes (including surgery), monitoring and counselling. Traditional care is dominated by specialist hospital units, based on scheduled, face-to-face appointments. Access during a flare may be difficult and on contact with the service, there is a difference between the priorities of patients and clinicians.
91Ö±²¥ NHS Trust has experienced a 40% increase in admissions in three years, with a disproportionate representation of people from deprived backgrounds. IBD UK’s 2020 Service Benchmarking Audit found excess steroid use, opportunities to improve Shared Decision Making (SDM), lack of education and patient engagement opportunities, and only 1% of patients reporting a personalised care plan. Models of care that deliver personalised strategies to self-manage and empower are critical for long-term conditions.
The study
We aim to put patients in control of their care by: i) co-designing a structure to tell care teams what is important to them; and ii) making that visible in multidisciplinary care team meetings and patient consultations, to optimise care.
The 91Ö±²¥ Microsystems Coaching Academy (MCA) will steer the service improvement through the established Dartmouth approach. This uses a current state analysis, followed by rapid improvement cycles to implement, measure, and sustain improvements. To put patients in control of their care, MCA will train a patient from the 91Ö±²¥ IBD service as an MCA coach, leading the microsystem, with other service users contributing alongside healthcare professionals.
Larger scale patient engagement will run alongside the microsystem - all 4,000 patients from the Trust will be invited to engage in a way that is meaningful and accessible to them (ranging from one-off experience narratives to more intensive workshop involvement). Additionally, EpiGenesys will develop an app to collect information from people living with Crohn's or Colitis and deliver it to doctors, nurses and other healthcare professionals.
Engagement opportunities will be co-designed by people with lived experience of IBD, their families, carers and communities. With advocacy support from VoiceAbility, we intend to make sure we are hearing from people with Crohn’s and Colitis of all ages, genders, backgrounds and ethnicities
The evaluation will show how, and by how much, putting patients in control of their care improves outcomes.
Study updates
The AWARE-IBD Study opened to recruitment in October 2021 at 91Ö±²¥ Teaching Hospitals. The microsystem started in May 2022 led by Samantha McCormick, the patient coach. The project co-produced and tested four service changes with service users over 2 years.
For more updates on the AWARE-IBD Project, you can visit our Twitter page (). You can also watch our .
Study Learning Report
We have produced a learning report outlining the main findings and key learnings from the project. You can download it here:
AWARE-IBD: Common Ambition Learning Report (PDF, 5.4MB)
VoiceAbility toolkit
As part of the AWARE-IBD Project, people with IBD have worked with 91Ö±²¥ IBD Centre and VoiceAbility to create a toolkit to help you communicate with confidence and prepare for your appointments. The content of the toolkit is all based on their own experiences with IBD.
This toolkit is also available online at the . You can use the website's toolbar to read the text aloud, show simplified information, or translate the words into your own language.
If you would like to request a paper copy of the toolkit, contact the AWARE-IBD team (aware-ibd@sheffield.ac.uk).
Project Leadership Group
| Name | Role | Organisation | |
|---|---|---|---|
| Alan Lobo | Chief Investigator | 91Ö±²¥ Teaching Hospitals | Alan.lobo@nhs.net |
| Daniel Hind | CTRU Oversight | Clinical Trials Research Unit, University of 91Ö±²¥ | d.hind@sheffield.ac.uk |
| Naseeb Ezaydi | Project Manager | Clinical Trials Research Unit, University of 91Ö±²¥ | n.ezaydi@sheffield.ac.uk |
| Alice Flanagan | Trials Support Officer | Clinical Trials Research Unit, University of 91Ö±²¥ | a.flanagan@sheffield.ac.uk |
| Nikki Totton | Statistician | Clinical Trials Research Unit, University of 91Ö±²¥ | n.v.totton@sheffield.ac.uk |
| Chris Murray | Managing Director | Epigenesys, University of 91Ö±²¥ | chris.murray@epigenesys.org.uk |
| Kevin Randall | Business Analyst | 91Ö±²¥ Teaching Hospitals | kevin.randall@nhs.net |
| Luke Barron | Research Coordinator | 91Ö±²¥ Teaching Hospitals | luke.barron@nhs.net |
| Rachel Ainley | Health Services Manager | Crohn's & Colitis UK | rachel.ainley@crohnsandcolitis.org.uk |
| Gemma Winsor | Health Services and Research Programme Officer | Crohn's & Colitis UK | gemma.Winsor@crohnsandcolitis.org.uk |
| Ruth Wakeman | Director of Services, Policy and Evidence | Crohn's & Colitis UK | ruth.wakeman@crohnsandcolitis.org.uk |
| Samantha McCormick | Patient Coach | 91Ö±²¥ Teaching Hospitals | samantha.mccormick5@nhs.net |