In 2019, Health Data Research (HDR) UK funded a set of health data 'hubs' for 3 years, each looking into a different health condition or topic. Gut Reaction, focusing on the conditions collectively knows as Inflammatory Bowel Disease (IBD), was a partnership between the the IBD BioResource (one of our common disease cohorts), the charity Crohn's & Colitis (C&C) UK, the UK IBD Registry, Cambridge University Hospitals NHS Foundation Trust, Wellcome Sanger Institute, AIMES and Privitar. Eastern Academic Health Science Network (EAHSN) acted as the project management office for the HDR UK funding period.
Following the completion of the HDR UK grant in August, Gut Reaction will continue under the NIHR BioResource.
Crohns's and Colitis UK, a national charity dedicated to Crohn's and ulcerative colitis, have been a vital partner in this programme through their network of patients and families who live with the two main forms of IBD: Crohn’s and ulcerative colitis.
Gemma Winsor, Research and Quality Improvement Lead at C&C UK, wrote a recent blog on the plans for Gut Reaction going forward, including the role of our valued patient and public review group (PPRG). Read part of Gemma's blog below including her conversation with some of our team here at the BioResource and information about how to take part in research.
How does the NIHR BioResource fit into Gut Reaction?
The NIHR BioResource comprises over 200,000 volunteers, with and without health conditions, 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, and a specialist programme for young people under 16 called the DNA, Children + Young People's Health Resource (D-CYPHR).
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. Access to data through Gut Reaction is made possible through the consent of the participants in the IBD BioResource, and their willingness to support research into IBD.
Laetitia Pele, IBD BioResource Research Coordinator said:
"As a national platform designed to make research into Crohn’s and Colitis faster, it helps develop understanding as well as new and better treatments. It does this by connecting researchers with suitable participants, samples, or data."
How have people with Crohn’s and Colitis been involved in Gut Reaction?
The Gut Reaction team 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 C&C UK brought together their project team, it was clear that their work could not succeed without the views and experience of people affected. They developed a patient involvement strategy and one of their earliest steps was recruiting people to the 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.
Gemma Winsor, Research & Quality Improvement Lead at C&C UK said:
"We are proud of the impact our PAC have had on the Gut Reaction hub, particularly their impact on the processes used. Their input led to changes in the way applications are reviewed and training materials have been developed to support patient involvement in health data research. This training is the first and only of its kind."
As the hub transitions to the NIHR BioResource, and the PAC ends its involvement in the initial 3-year period of Gut Reaction, Crohn's and Colitis UK 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.
How will people continue to have a say in the use of their data?
Gut Reaction has always involved patients in the process 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. The Crohn's and Colitis data management team share new requests in order to decide what level of privacy measures may be appropriate. This case-by-case approach helps them to find the right balance between data safety and supporting essential research in IBD.
Previous PAC members were offered the opportunity to be part of the 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.
Edmond Wood, Communications Manager at NIHR BioResource, said:
"We are pleased that PAC members are represented on both. Our long-term commitment to involving people in how their data is used is supported by the NIHR BioResource leadership team and Crohn’s & Colitis UK."
How can people 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.
Along with IBD patients joining the IBD BioResource, anyone can join the NIHR BioResource, whether living with a health condition or not. It is important we have diverse representation from across the country in our national panel of volunteers so that we can continue to support vital health research studies that benefit everyone.
If you are a researcher interested in using the BioResource to support your work, please visit our information page.
You can find out more about Crohn’s & Colitis UK on their website.
You can keep up to date with the NIHR BioResource on Twitter and LinkedIn.
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