My IBD Portal: a web-based management package for people with Crohn's or Colitis

What this research looked at

Crohn’s Disease and Ulcerative Colitis are long-term conditions that can affect many aspects of life. So it’s important for people with Crohn’s or Colitis to get prompt advice and reliable information to help them manage their lives. Researchers at the University of Manchester and Salford Royal worked with patients, healthcare teams, IT specialists and Crohn’s & Colitis UK to develop an online portal to help people living with Crohn’s or Colitis to do just that.

‘My IBD portal’ aims to empower people living with Crohn’s or Colitis to take a more active role in managing their conditions. It is a secure online system that lets people with Crohn’s or Colitis access:

• Their personal health record, including clinic letters, test results, medication details and a personalised care plan
• Interactive tools to help them manage their IBD, such as disease monitoring charts and a food diary
• Reliable and accurate information tailored to their needs

The portal also lets people contact their IBD team directly, and automatically sends emails if their disease activity scores are high.

‘My IBD portal’ was originally trialled at Salford Royal (which you can read about here). During the next stage of the research, the researchers were hoping to test whether it could work in other NHS Trusts.

What the researchers found

The researchers found it was harder than they expected to set up the portal in other NHS Trusts because of IT challenges. So they updated and improved the portal to make it ready for wider roll out. They are now talking to IBD teams in other Trusts who are planning to set up the service. Some Trusts have already started setting it up.

In Salford, over 1,000 people with Crohn’s or Colitis are now enrolled on My IBD portal. So far, the researchers have found that:

• People who used the portal needed fewer clinic visits than people who did not use the portal.
• They also felt they had better support than people who were not using the portal.
• Overall, 98 in every 100 people who used the portal rated it as excellent.

Salford Clinical Commissioning Group have fully commissioned the portal.

This work was shortlisted for Health Service Journal Awards 2017 and Royal College of Physicians Excellence in Patient Care Awards 2018.

What the researchers think this could mean for people with Crohn's and Colitis

The researchers think that ‘My IBD portal’ gives people with Crohn’s or Colitis more control, with greater independence to self-manage through better understanding of their condition. They think it could be helpful for most people with Crohn’s or Colitis. They are hoping to test this in a randomised controlled trial.

The researchers hope that My IBD portal will be rolled out in other hospitals in the future.

Scientific publications

• Calvert CR, Lal S, Stansfield C, et al. OC-082: The Development of a Web-Based System to Enhance Care in Inflammatory Bowel Disease. Gut 2013; 62: A35-A36. Available at: https://gut.bmj.com/content/62/Suppl_1/A35.2
• McLaughlin J, Stansfield SC, Lal S, et al. OTU-031: My–IBD portal: progress and impact update. Gut 2018; 67: A223. Available at: https://gut.bmj.com/content/67/Suppl_1/A223.2
• Calvert RC. The development, implementation and evaluation of a web-based care package, designed to facilitate self-management and engage patients with inflammatory bowel disease: A thesis submitted to the University of Manchester for the degree of Doctor of Medicine in the Faculty of Medical and Human Sciences 2015. Available at: https://www.research.manchester.ac.uk/portal/files/84027074/FULL_TEXT.PDF  (PDF).

Who is leading this research: Professor John McLaughlin, University of Manchester
Our Funding: £100,441
Duration: 3 years
Grant reference: SP2013/3
Official title of application: An evaluation of the technical, human and organisational factors impacting the adoption and implementation of a web-based management package ‘My IBD Portal’
Tags: technology/personalised care