Health Data Research UK funded a set of health data ‘hubs’ for 3 years, and Gut Reaction was one of them. We have been a partner in this programme alongside people living with Crohn’s and Colitis from the start.

As this initial funding ended in August 2022, we wanted to let you know what’s next. We’ll continue to support Gut Reaction as part of the National Institute for Health and Care Research (NIHR) BioResource.

We spoke to Edmond and Laetitia who are part of the team at the NIHR BioResource, alongside Gemma, our Research and Quality Improvement Lead, to find out more about this transition and how you can get involved.

Tell us more about the NIHR BioResource.

The NIHR BioResource is comprised of over 200,000 volunteers, who are willing to participate in health research. It covers three main areas: common diseases, rare diseases, and the healthy population. In 2020 an additional COVID-19 BioResource was rapidly established to support research into the virus. 

Every individual who joins the NIHR BioResource completes a health and lifestyle questionnaire, donates a biological sample (usually blood but in some cases saliva), allows access to their medical records, and agrees to be contacted about participating in health research. People agree to their data and/or biological sample being used for approved research; this means that they have read, understood, and signed a document explaining what this information will be used for and when.

Any conversation between a doctor and patient, including treatment plans or test results, is confidential and this information is treated with great respect. Secure and accurate storage of medical records is vital to make sure that each patient receives the highest possible standard of care. However, when combined with health information from many other people, it can also provide an important resource for research. The IBD BioResource is a part of the common diseases area of the NIHR BioResource and does just that.

How have people with Crohn’s and Colitis been involved in Gut Reaction?

We understand that some people have concerns about the use of health data, which is why working with people with Crohn’s and Colitis has been so important. Their involvement has shaped how Gut Reaction functions now and, in the future.

As we brought together our project team, it was clear that our work could not succeed without the views and experience of people affected. We developed a patient involvement strategy and one of our earliest steps was recruiting people to our Patient Advisory Committee (PAC). This is a group of people with lived experience of Crohn’s and Colitis who support decision making and ensure that the views of the community are represented within Gut Reaction.

As the hub transitions to the NIHR BioResource, and the PAC ends its involvement in the initial 3-year period of Gut Reaction. We worked in partnership with PAC to produce a report to summarise and evaluate the involvement of people with Crohn’s and Colitis in the project. This provides clear recommendations for other health data research projects and for ongoing involvement in Gut Reaction.

So, how will people continue to have a say in the use of their data?

Gut Reaction has always involved patients in the process used to decide who can access data. Now, thanks to the PAC, input from people with Crohn’s and Colitis is one of the first steps with every data request. A new Patient and Public Review Group (PPRG) will help to ensure that Gut Reaction projects are centred around the views and needs of people with Crohn’s and Colitis. New research will be ultimately driven by delivering benefits to our community.

The PPRG might consider some types of research to need tighter security controls than others. That’s why members of the public are always involved when data access requests are discussed. Our data management team share new requests in order to decide what level of privacy measures may be appropriate. This case-by-case approach helps us find the right balance between data safety and supporting essential research in IBD.

Previous PAC members were offered the opportunity to be part of our new PPRG or to sit on the National Participant Advisory Group (NPAG) at the NIHR BioResource and be involved in strategic and operational decisions at the organisation. 

Tell us how people can get involved in Gut Reaction and help 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 hospital is included in list of open sites, as recruitment needs to happen through your local hospital 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.