AWARE-IBD

• Research type

  Research Study

• Full title

  AWARE-IBD: Putting people with inflammatory bowel disease (IBD) in control of their care

• IRAS ID

  298930

• Contact name

  Alan Lobo

• Contact email

  alan.lobo@nhs.net

• Sponsor organisation

  Sheffield Teaching Hospitals NHS Foundation Trust

• Duration of Study in the UK

  2 years, 5 months, 29 days

• Research summary

  The AWARE-IBD project is funded by the Health Foundation’s Common Ambition programme. Common Ambition aims to improve access to and quality of care, especially for those whose needs are not being met, by involving members of the public in the design of healthcare. These are the global aims of the AWARE-IBD project.

  The University of Sheffield (TUoS) are working with Crohn’s and Colitis UK and local partners in Sheffield to re-design IBD services, shaped by those who use them – people with Inflammatory Bowel Disease (IBD). We aim to put patients with Crohn’s Disease or Ulcerative Colitis, the two main forms of IBD, in control of their care by: 1) co-designing a structure to tell care teams what matters to them; and 2) making that visible in multidisciplinary care team meetings and patient consultations, to optimise care.

  To do this, TUoS will be working in partnership with:
  • Sheffield Teaching Hospitals NHS Foundation Trust
  • Sheffield Microsystems Coaching Academy (MCA)
  • EpiGenysys
  • Crohn’s and Colitis UK
  • VoiceAbility

  The Sheffield MCA will steer service improvements 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 two patients from the Sheffield IBD service as MCA coaches, leading the microsystem, with other service users contributing alongside healthcare professionals.

  The research evaluation will show how, and by how much, putting patients in control of their care improves outcomes. TUoS will design a web survey system to collect patient-reported data on the effects of the service changes. Data will be collected using a validated symptoms score, the IBD Control questionnaire, and a patient-reported experience measure (PREM), developed by expert patients. Semi-structured interviews with clinicians and service users will investigate how acceptability and sustainability of the changes.
  

• REC name

  Wales REC 3

• REC reference

  21/WA/0264

• Date of REC Opinion

  31 Aug 2021

• REC opinion

  Further Information Favourable Opinion