Experiences of using e-Health tools to support Crohn’s and Colitis care

Introduction

About 500,000 people in the UK have Inflammatory Bowel Disease (IBD) and everyone’s journey with the diseases is different. This means that people with Crohn's or Colitis require regular follow-up from their healthcare teams and in the past, this has required regular visits to hospital disrupting the person's daily life.

Healthcare staff using e-Health tools can monitor patients remotely, avoiding frequent visits to hospitals. The current evidence states that people with Crohn's or Colitis support the use of e-Health tools. This evidence also says that they would like a mixture of face-to-face and virtual contact with their clinical teams. Considering the individual journey each person has with their condition, deciding which is the best way for each person to be followed has many considerations.

Methods

The research has a mixed approach using experience and feelings (known as qualitative research), and facts and figures (known as quantative research). This mixed research has three stages:

• Carry out a review of the evidence of effectiveness of e-Health tools used in Crohn's and Colitis, and other health conditions.
• Interviews of people living with Crohn's or Colitis and their supporting healthcare staff to discover their experience of using e-Health tools for follow-up and care of their conditions.
• The results of the interviews will inform the questions for a questionnaire which will provide data about what people living with Crohn's or Colitis and their supporting healthcare teams think is needed in a structural form to help with decisions in how follow-up care for each person should be delivered.

How will this research benefit people with Crohn's or Colitis?

By understanding the views and experiences of people with Crohn's or Colitis on the use of digital tools to support virtual follow up and supported self-management, this will allow us to develop a structure to support the decisions about ongoing follow-up care for each person living with the conditions. This structure will give people with Crohn's or Colitis a chance to shape their own follow-up plan.

Patient and Public involvement so far and planned through the research

People affected by Crohn's or Colitis have helped develop this proposal in the following ways:

• Sharing views about e-Health tools in an advisory group set up to help understand if this research was important to people living with Crohn's or Colitis
• People living with Crohn's or Colitis have helped to design the proposal and will continue to work in partnership with the researchers to contribute to and produce the study in an advisory group
• This research will ask the views of healthcare staff who care for people with Crohn's or Colitis. Some of them will be involved in the advisory group.
• Patient Research Ambassadors have helped to develop this Plain English Summary

If you have any other questions, you can also get in touch with the researcher in the following ways:

Pearl Avery
Supported by Dr Sue Green, Bournemouth University, Professor Lesley Dibley, University of Greenwich, and Dr Karen Kemp, Manchester Royal infirmary and University of Manchester

While we think we know what questions need to be asked in the semi structured interviews, we would really like to hear from people living with Crohn's or Colitis on what they think is important to ask at this stage. If you would like to give us your feedback on this, please complete the form below.