These patients make sure your health data is handled with care.

14 January 2022

Gut Reaction is a major research project bringing together data from thousands of people living with Crohn’s and Colitis across the UK.

Our Patient Advisory Committee (PAC) speak on behalf of all the people who contribute their data.

They ask important question and interrogate how things are done so patient voices remain a vital part of the project.

Four members of the Gut Reaction PAC, David, Caroline, Ruby, and Rosanna, tell us about their involvement in this important and exciting research.


It is exciting to be involved in a project that harnesses the potential of patient data to improve research outcomes and, ultimately, improve patients' lives. I joined PAC in July 2021.

I was diagnosed with Crohn's disease in 2009 and after a particularly bad relapse at the start of 2021, I decided I wanted to do more to help fellow patients and ensuring IBD research is more effective and meets patients' needs is an important part of that. 

Caroline
Living with Crohn's

I have recently joined the PAC because I was looking for something useful to do post-lockdown. When an opportunity arose linked to this illness that I share with many others, it felt like the right opportunity to take.

David
Living with Colitis

The power of health data

David: When lots of health data is pooled, the patterns identified can help us all to live healthier lives, and hopefully lead to a better understanding of health conditions, their treatment, and eventual cure.

Rosanna: Every time we go to the doctors, hospital, have a scan or blood test, we generate data automatically but most of it just sits on a computer. As patients with long term conditions, we create a lot of data, and it seems a real shame for all that valuable information to sit there unused.

I appreciate that data is sensitive, and I don’t share mine without careful consideration, but by allowing its use in secure and controlled ways, all that information could really make a difference to patients now and in the future.

Caroline: The more people who share their data, the more diverse, relevant and representative the pool of data becomes. This broadens research possibilities and makes research outcomes more accurate. Ultimately this will lead to research which has a much higher chance of improving patients' lives.

I had surgery in May last year and in the days following my discharge from hospital post-surgery I was already feeling better than I had done in months. This was when I decided to give back to Crohn's & Colitis UK. Their online information and events really helped me and I wanted to be able to help others in the same position in myself.

My career within data and artificial intelligence means I work with data every day so when the role advertisement for the PAC came up, I jumped straight onto the opportunity. I’m passionate about helping to drive research that helps future generations of patients and by joining the PAC I feel that I'm able to help, even if it's just a little bit.

Ruby
Living with Colitis

Assessing who gets access

Ruby: Gut Reaction is all about collating many data sources into one place but, as you can imagine, patient data is incredibly sensitive and needs to be treated as such. There needs to be a standardised process for accepting or rejecting applications to access this data and the PAC allows those who have Crohn’s or Colitis to add their thoughts on how this should work.

At the end of the day, it could be data about us, and so we want to make sure it's used appropriately for the research. This was a really interesting discussion and enabled Gut Reaction to have a patient perspective on this topic, which I feel is very important.

Caroline: The outcome of these discussions is that patients will have representatives at the Technical Group stage looking at whether a research application can be fulfilled from the proposal. Then, if successful, the proposal will be assessed by more patient representation to see whether an application to utilise data should be fulfilled.

Rosanna: Looking at changes to Gut Reaction’s data access proposals has been more complex than I imagined. There are many stakeholders and data controllers involved, but we now have some excellent proposals which will ensure patients and the public can make a meaningful contribution.

I joined the Gut Reaction project before the PAC was formed, as I was already involved in another research project. So, when Gut Reaction was being put together, I advised on the proposals and have been involved ever since.

The project is amazing in terms of what researchers might discover to improve the lives of people with Crohn's and Colitis. However, it was also concerning as these discoveries would be using sensitive information, and the whole idea of data sharing was very new to me.

I wanted to make sure that patient voices were heard, and our concerns were addressed, to ensure that every possible safeguard was put in place to keep our information secure.

Rosanna
Living with Crohn's

Keeping patients at the forefront

Caroline: Patients on the PAC have been able to challenge assumptions, make suggestions, and give insight to the Gut Reaction project. This has improved the framework, processes, and decisions of the research to better benefit patients protect patient data while doing so.

Rosanna: From the early days where it was just a few voices, we’re now a much larger group who are making proposals and instigating change. Our involvement has shown clinicians, data scientists, project teams, and all the stakeholders in Gut Reaction the value that patients and the public can add to their projects. Many of them will move on to other projects in the future but hopefully they will take this with them so that patients and the public can always be at the heart of health research.

Ruby: As patients, we bring in a different perspective which may have been missed and give Gut Reaction a direct relationship with those who will hopefully benefit from the initiative. I also believe that Gut Reaction wouldn't be as successful with the general public if patients weren't brought along on the journey. I hope it continues this way, as I am really enjoying being part of the team!

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