Gut Reaction wins award for patient engagement

Inflammatory Bowel Disease hub, Gut Reaction, wins the Public and Patient Involvement and Engagement Award at Health Data Research UK’s annual awards.

Amplifying patients’ voice in health data research  

Gut Reaction, the Health Data Research Hub for Inflammatory Bowel Disease (IBD), was announced the winner of the Public and Patient Involvement and Engagement Award at HDR UK’s Annual Scientific Conference.

Gut Reaction is a research project that aims to facilitate the use of valuable real-world data held in the NIHR IBD BioResource, the IBD Registry and participating NHS Trusts by academic and industrial researchers. The Hub is a unique resource that integrates data from multiple sources within a secure research environment that allows approved researchers to access data, whilst protecting the privacy of participants.  

Each year Health Data Research UK (HDR UK) awards prizes for excellence in health data research. This award celebrates best practices and innovation in public involvement and engagement, using criteria in line with the UK Standards for Public Involvement, across all aspects of research, infrastructure and service development, within HDR UK and beyond. 

Involving patients in decision-making about how their data is used for patient or societal benefit has been central to the work of Gut Reaction. The team has worked closely with the Patient Advisory Committee to design and implement a sustainable model for data sharing for innovation in inflammatory bowel disease. 

Rosanna Fennessy, Patient Lead for the Gut Reaction Hub, talks more about how patient involvement has been the core of this project: 

The importance of patient and public involvement 

Winners were selected by a panel of experts, and presented at the HDR UK Scientific Conference on Wednesday 14 December, 2022.  

HDR UK’s announcement stated:

"Patient and public involvement and engagement is essential to HDR UK’s work. We want the views and ideas of patients and public to be embedded into each stage of research, to ensure public data is used in a way that is transparent and trustworthy, and meaningfully improves lives.

"With the support of Crohn’s & Colitis UK, Gut Reaction’s Patient Advisory Committee was formed at inception to facilitate patient involvement in planning and decision-making. Gut Reaction is now a well-established data resource supporting patient-centred research in inflammatory bowel disease.

"Of note, Gut Reaction has done a significant amount of work developing training materials to support patient involvement in health data research. The panel believes this to be an exceptional resource and a contribution to PPIE that will remain valuable well into the future."

How can I get involved with Gut Reaction and help with future research?  

You can get involved in Gut Reaction by joining the IBD BioResource. The IBD BioResource is open in sites across the UK and has recruited over 36,000 IBD patients to date. If you have Crohn’s or Colitis and are willing to participate in future research then please check whether your local hospital is included in list of open sites, as recruitment needs to happen through your local clinic. If your hospital is a recruiting site, please ask your IBD team if you can take part at your next appointment or you can get in touch with the IBD BioResource central team. Along with IBD patients joining the IBD BioResource, anyone can join the NIHR BioResource, whether living with a health condition or not. The importance  having diverse representation from across the country within our national panel of volunteers means we can continue to support vital health research studies that benefit everyone. 

If you’re a researcher, you can explore the data sets available through Gut Reaction using the Health Data Research Innovation Gateway, and apply for access through the NIHR BioResource data access process. You can also visit the Gut Reaction website for more information. 

If you are a researcher interested in using the BioResource to support your work in other areas, please visit our information page. 

You can keep up to date with the NIHR BioResource on Twitter and LinkedIn.  

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