Behind the scenes

Our new animated film explains how the Gut Reaction Health Data Research Hub enables medical researchers to come up with new treatments and approaches to tackling Crohn’s and Colitis. The film will launch very soon but in the meantime, as a member of Crohn’s & Colitis UK, you can get a sneak preview here.

One of the people involved in the development of the animation was Rosanna Fennessy. Rosanna was diagnosed with Crohn’s in 2004 and is the patient representative on the core team for Gut Reaction. In this role, Rosanna helped throughout the development of the new animation, from approving the focus of its message to reviewing storyboards.

“I think the animation does a really good job of getting the information over,” she says. “My concern was always about trying to make it clear what the benefits of a patient getting involved with Gut Reaction are.

“Many people with Crohn’s and Colitis go through a process where we have to try lots of different treatments. Researchers are still learning about this disease, but they know there might be some kind of genetic component. By gathering our data and combining it with endoscopies, prescriptions and things like that through Gut Reaction, they can look for patterns.

“The way I understand it – and this means the most to me – we might be able to get people onto the medication that will suit them better from the beginning, instead of after years of trying things that don’t work. Doctors could look at people’s particular characteristics, and the way their condition manifests at a certain point in time, and then predict how they could benefit from a specific medication straight away.”

Rosanna’s data is included in the IBD BioResource, a database of genetic and lifestyle  information from over 34,000 people with Crohn’s and Colitis that researchers use to accelerate research and develop better treatments. The IBD BioResource is now part of Gut Reaction, bringing together hospital admission data, images from endoscopies and radiology, and other information such as treatments. This is all within a safe and secure environment.

“I’m usually quite sceptical about sharing data and am keen on making sure that we only do so for good reason,” says Rosanna. “But we do create data every time we go to a GP or to the hospital and it would be a shame if nobody could do anything with this information.”

Thanks to the establishment of Gut Reaction, medical researchers – who have to be approved before they can access the data – will now have access to even more anonymised patient information, enabling further research into potential treatments and cures for Crohn’s and Colitis.

The role of people living with Crohn’s and Colitis in establishing this resource has been invaluable. And their input helps ensure you can be confident the data is being used responsibly, securely and for the good of healthcare.

For Rosanna, being a patient representative has been a very rewarding experience. “I genuinely feel that we are listened to as patients,” she says. “I don’t think I’ll ever work full-time again because of my health, and this is a way to get involved in something I feel strongly about. Our ideas have always been really welcome, even when we ask difficult questions.”

Find out more about opportunities to get involved in our research here. 

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