Gut Reaction is the Health Data Research UK (HDRUK) Digital Innovation Hub for Inflammatory Bowel Disease (IBD).
It aims to build on the high-quality health data held in the NIHR IBD BioResource by combining it with ‘real-world’ data from participating NHS hospitals and the UK IBD Registry. This will allow researchers to use the powerful pooled data to support important research into IBD.
Who is Gut Reaction?
Gut Reaction is a collaboration involving:
- Patients and the public,
- The IBD BioResource,
- The UK IBD Registry,
- Crohn’s & Colitis UK,
- Ten collaborating NHS Trusts, and
- Technology partners AIMES, Privitar and Microsoft.
It is led by Cambridge University Hospitals NHS Foundation Trust and is funded by HDRUK.
Why is Gut Reaction needed?
Crohn’s and colitis affect around 500,000 people in the UK. These conditions can have some really difficult symptoms for patients and are incurable, requiring long-term management, costly drug treatments, and sometimes major surgery. Treatment outcomes are variable for poorly understood reasons. We need better understanding of the variable response and new generations of therapeutics.
While the latest advances in technologies have produced a lot of progress in understanding contributors to IBD, disease progression and treatment outcomes - the power of this knowledge cannot be fully realised until these data are combined and analysed alongside longitudinal clinical data (i.e. data gathered over a long period of time, such as going from remission to flare and back again).
The Gut Reaction model
Combining data from multiple sources
Gut Reaction is aiming to develop methodologies to link:
- Clinical data (e.g. medication),
- Biochemical data(e.g. blood results) ,
- Imaging data (e.g. endoscopy and radiology),
- Histopathology data (e.g. tissue samples),
- NIHR IBD BioResource data (e.g. genomics, clinical and health and lifestyle information), and
- IBD outcome and prescribing data from the IBD Registry.
Granting access to Gut Reaction data
Researchers can search available data sets, and apply to access subsets of data of relevance to their research. Only approved researchers will be able to access and analyse the requested de-personalised data through a secure, on-line and trustworthy research environment (TRE). Through Gut Reaction and the NIHR BioResource, it will also be possible to invite people with IBD to take part in new clinical studies and trials that might be suitable for them.
Altogether, the Gut Reaction model will accelerate the path to discovery and innovation for the benefit of Crohn’s and colitis patients.
To be successful, we know we have to be clear and transparent about why we need the data, how we are protecting the privacy of individuals, and what we are doing with the data to maximise its use for research. We are, therefore, passionate about patient and public involvement and keep it at the centre of the Gut Reaction programme.
With this in mind, Gut Reaction has established its own Patient Advisory Committee (PAC), co-ordinated by Crohn's & Colitis UK, where members are involved in making important decisions as the Hub develops (e.g. patient involvement in reviewing data access requests). To hear directly from two of our PAC members about why patient input to the Gut Reaction programme is so important, you can read this Crohn's & Colitis UK blog.
I find it enjoyable and it is great to see that we are making a difference. I think getting involved is a great way to give back to a service you have either benefited from or would like to see changes in.
The future of Gut Reaction
To summarise, we believe Gut Reaction will become a world-class, multi-dimensional integrated data-rich resource for research and innovation providing a model that is scalable and replicable across other disease areas.
For more information on Gut Reaction please visit us at www.gut-reaction.org