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Putting people in control of their care
from Connect Magazine
We have designed a template for a personalised care plan
AWARE-IBD, our project to re-design services and deliver improved outcomes for people living with Crohn’s or Colitis, is testing new approaches to delivering services.
Researchers in Sheffield are working to design a structure to inform care teams what is important to people when they are receiving care. This will demonstrate how, and by how much, putting people in control of their care improves outcomes.
The team has recruited 283 people to the study, and in November they trialled a new face-to-face clinic led by the IBD Nurse Specialists for those receiving biologics infusions at the Royal Hallamshire Hospital.
They also trialled a new IBD ‘consultant of the day’ clinic for people who are newly diagnosed, have changed biologic treatments or require urgent clinical review due to a flare-up.
Based on participants’ feedback, the team has designed a template for a personalised written care plan. This will now be tested to see how acceptable it is and whether or not it improves people’s experience of care.
Targeting new areas for investigation
We are funding seven exciting new research projects, the first to be awarded under our new research strategy, in areas of research that are important to people living with Crohn’s or Colitis.
The latest on our three-year project to shape better services 1)
We’re helping investigate a range of topics including fatigue, surgery and personalised medicine. We’ve recently opened up our 2023 grants call and we’re asking researchers to submit project ideas in those same priority areas again.
These areas of research have not received significant attention and much progress is still to be made.
We hope that by focusing on these specific areas, we can build a body of work that will have a positive impact for those living with Crohn’s or Colitis.
Finally, the team is finalising an ‘IBD toolkit’ to help people communicate confidently with those involved in their care, developed by people with IBD and VoiceAbility.
Project manager Elena Sheldon says: “Involving people with Crohn’s or Colitis is at the heart of our project, and enables us to make meaningful changes to the IBD service.
“We’ve made great progress and want to thank everyone who has been involved so far. We are excited to see what the final year of the project brings.”
Counting the cost
We’ve commissioned two pieces of research to find out the economic cost of Crohn’s and Colitis in the UK.
We’ve asked York Health Economics Consortium to tell us how much Crohn’s and Colitis costs people living with the conditions, the NHS and wider society, and we’ve asked Newcastle University to find out the cost of delayed diagnosis.
Once complete, these projects will allow us to speak up for you and lobby for change with policymakers across the UK.
