AWARE-IBD

Putting people with inflammatory bowel disease (IBD) in control of their care.

Aw
On

Patient Information Sheet

The University of Sheffield CTRU are working with Crohn’s and Colitis UK and local partners in Sheffield, as one of only four projects to be funded under a new Health Foundation programme called Common Ambition (project number FR-000002444),.

The aim of the 3-year project is to re-design IBD services, shaped by those who use them – people with Inflammatory Bowel Disease (IBD)s. 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.

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 (IBD) 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. 

Sheffield 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 Sheffield 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 Sheffield 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 update

The AWARE-IBD Study opened to recruitment in October 2021 at Sheffield Teaching Hospitals. As of December 2021, 140 patients have been recruited to the study. Recruitment will continue in 2022, with the microsystem starting in February 2022.

Project Leadership Group

Name

Role

Organisation

Email

Alan Lobo

Chief Investigator

Sheffield Teaching Hospitals

Alan.lobo@nhs.net

Daniel Hind

CTRU Oversight

University of Sheffield - CTRU

d.hind@sheffield.ac.uk

Elena Sheldon

Project Manager

University of Sheffield - CTRU

e.m.sheldon@sheffield.ac.uk

Katie Ridsdale

Trials Support Officer

University of Sheffield - CTRU

k.ridsdale@sheffield.ac.uk

Nikki Totton

Statistician

University of Sheffield - CTRU

n.v.totton@sheffield.ac.uk

Chris Murray

Managing Director

University of Sheffield - Epigenesys

chris.murray@epigenesys.org.uk

Kevin Randall

Business Analyst

Sheffield Teaching Hospitals

kevin.randall@nhs.net

Luke Barron

Research Co-ordinator

Sheffield 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

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