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