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  • Project led by Abertawe Bro Morgannwg University Health Board and the National Association for Colitis and Crohn’s Disease.
  • Based at Abertawe Bro Morgannwg University Health Board in North Wales.
  • Aimed to examine how electronic health records could support better communication between health professionals and patients with inflammatory bowel disease and reduce demand for health resources.
  • The team worked with patients to develop an electronic health record and evaluated its effectiveness through a randomised controlled trial.

The Abertawe Bro Morgannwg team developed an electronic health record for patients with inflammatory bowel disease. The aim of the project was to:

  • encourage better communication between health professionals and patients
  • increase individual responsibility for health care
  • reduce demand for health resources. 

The project team recruited a group of patients with ulcerative colitis or Crohn’s disease to join a patient focus group to design the intervention. The team also worked with the National Association for Colitis and Crohn’s disease to develop the educational content. The outcome was the ELIJAH electronic folder containing:

  • My History - the clinical history
  • My Plan - a management plan 
  • My Update - updates from appointments and contacts.

Outcomes

Feedback from patients was very positive. Patients had used My Plan to change their medication according to their treatment plan, without needing to contact a health professional. They said they had learnt more about their condition and felt more in control of it.

Consultants said that the background information in My History enabled them to treat patients more quickly and helped to reduce delays in clinics. GPs reported that the shared record provided more timely information about patient results and treatment regimes, and promoted continuity of care across medical and nursing teams.

Challenges

The initial plan was to give patients electronic access to their own records, but focus group discussions revealed that this would not be appreciated by all participants. As a result, it was changed to be a summary extracted from the record. A high level of resources had to be committed to developing the ELIJAH folder.

Further reading

About this programme

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