Being Me with IBD: The role and impact of the e-advisory group

In this blog, we are looking at the role, impact and influence the young person’s e-advisory group on the Being Me with IBD study.

What is a young person’s e-advisory group?

The Being Me with IBD study has been guided throughout by an e-advisory group of ten young people. These young people are aged 15-26 year old and all have IBD, broadly reflecting the young people who have been taking part in the research study. The e-advisory group ensures we are connected to a group of young people with IBD who can directly shape the research study.

How have we recruited young people to the e-advisory group?

In the beginning stages of the study, a consultant at Alder Hey Children’s NHSFT identified two young people who agreed to join the advisory group and were extremely helpful in the early stages of the study development. We also contacted leads from local Crohn’s and Colitis UK groups to see if they may be able to identify any young people who would be interested, but this approach was not as successful. Following on from an article about our research in the Crohn’s and Colitis UK newsletter, eight young people contacted us asking how they could be involved. As we were keen to increase the number of young people in the e-advisory group this provided the perfect opportunity and finalised our group of ten young people.

How have we maintained contact with the e-advisory group?

Early in the study we asked the young people about their preferred methods of communication and they advised that this would best be done primarily through email, as this made it easier for them to contribute to discussions in a way that did not disrupt their study, work and lives. Using this method of e-engagement, rather than physical meetings, has worked well for the young people, who are geographically spread and it means they can respond when they have time around their busy lives.

How has the e-advisory group contributed to the research study?

The group have been central to all aspects of the study. They have reviewed and approved our study materials such as our information sheets to ensure they are appropriate for use with our participants, helping to ensure they have been sensitive, easy to read and presented in a friendly and inviting manner. Their input in relation to our data collection methods was particularly helpful, with them giving feedback on the length and nature of the survey and the methods used in the qualitative interviews. Their savviness with social media has been invaluable in helping us engage a wider audience and they have also advised us on the content and focus of this blog. Their focus for data analysis has so far been on identifying other chronic conditions which we could use as comparators for the quantitative data.

As we move into the dissemination stage, we have been seeking their advice on the critical messages for and design of dissemination materials. We plan to continue to work with the e-advisory group to produce outputs such as videos, posters, or leaflets that will help spread the messages from the study to other young people with IBD and to the wider public.

What have been the benefits of an e-advisory group for the research study?

The team and the study have hugely benefitted from the involvement of the e-advisory group. We feel that through their input our research study has been enhanced and is better able to reflect the lives of young people living with IBD. The group has also helped us understand more about how young people want to be involved in research and their preferred methods of communication. Their insights continue to influence us as the study draws to a close. Working with the young people has not only impacted on how we have run this study but will also how we will work in the future.

Thanks for your interest in our study

The Being Me with IBD Study Team

 

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