Blog: Taking part in health data research

04 August 2020

Gut Reaction is a research project that brings together data from thousands of people across the UK, to help us carry out research to improve the lives of people living with Crohn’s and Colitis, faster. Funded by Health Data Research UK, Gut Reaction builds on the high-quality data in existing data sources, the IBD BioResource and the IBD Registry, combining safely and securely with other data in a way that hasn’t been done before.

By working with hospitals across the UK, Gut Reaction can merge genetic data with health records, creating an even richer data resource. The most powerful way to use data is through multiple data sources – picture it like building blocks. The more blocks joined and stuck together, the stronger the structure. This is what makes Gut Reaction so unique.

Researchers will need to apply to access the data in Gut Reaction, which is only granted to researchers with approved reasons. And patients are part of the panel that helps decide this. Gut Reaction presents an opportunity for researchers, doctors, and people living with Crohn’s and Colitis, to work together to make sure health data is used in the right way to benefit the Crohn’s and Colitis community and the wider NHS.

As partners in this programme, Crohn’s & Colitis UK are leading on Patient & Public Involvement to ensure the patient voice is being listened to and is driving the work of Gut Reaction. We spoke to a couple of Gut Reaction’s Patient Advisory Committee (PAC) members about their time on the project.

Hello! Can you tell us a little bit about how you’ve found being part of the Gut Reaction PAC?

I enjoy sitting on the panel and I have even found some aspects fun. I have had the opportunity to attend different events around the country – meet other patients, meet other researchers and also those who are involved in policy making.

Living with Crohn's

I find it enjoyable and it is great to see that we are making a difference. It is easier than I imagined but giving proper insightful feedback does take time.  

Diagnosed in 1983

 What made you decide to take part?

Joanne: To try and put some of my skills from my work life to use in an area I am passionate about making a difference in, after living with my condition for 37 years.

Rosanna: I decided to take part because I feel strongly about incorporating patient and public voice in research priorities. In the world of research, it can be easy to forget that the patients and carers who it will impact are all individuals with unique circumstances. A ‘one size fits all’ approach will not work. Patients and the public offer a real-world perspective of what it is like to live with a condition or to experience treatments. Patients are often experts in their conditions while researchers may only be experts in part of it. For example some researchers might feel that we should focus all our efforts on finding out the causes of disease, whereas patients and the public might suggest we should focus on what living with a disease is like, such as mental health impacts.

It sounds like it’s been a really interesting experience. What would you say to anyone who is thinking about taking part in research in the future?

Rosanna: I would say go for it. My experience has been really positive. I have learnt a lot and perhaps seen things about the way the health system works from another perspective. I have felt valued and you feel like you make a difference. I first became involved in a patient panel when I was not working due to my Crohn’s and I found it very fulfilling and it helped me to feel I was making a contribution when I couldn’t work. In the panels and committees I have been on I have met lots of interesting people and I think it has encouraged me to do things like volunteer to chair the patient panel at my local hospital.

Joanne: 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. However, don’t be afraid to say I can’t do something when you can’t. You are not there to represent all people with you condition. You are there to give you opinion based on having the condition and your experience.

Thank you both! We’re excited to see the future research findings that Gut Reaction will bring about.

People like Joanne and Rosanna and their involvement in Gut Reaction mean that if you provide your data to Gut Reaction you can trust that it will be safely stored and used.

To contribute data to Gut Reaction, you can sign up to both the IBD BioResource and the IBD Registry. Speak to your doctor to find out whether your hospital is part of either of these projects, then they can help you sign up at your next appointment.  

Gut Reaction will help us fast-track our understanding of Crohn’s and Colitis, leading to better treatments and care, and maybe even a cure.

If you have any questions about Gut Reaction, please feel free to contact us.

see research involvement opportunities