What made you decide to join the group?
When I was first diagnosed I had quite a tough time throughout the whole process leading up to the diagnosis. At the time I had no idea that this condition even existed and I didn't know anyone who had it so it was a difficult time. If I can do anything to make that better for people being diagnosed in the future then I would like to do that. If I could help in developing new treatments for the future it would make things better for others in my situation.
How did you first hear about the group?
I'd been in hospital for a procedure and when I was being discharged, a nurse gave me a leaflet about the Liver and GI Patient Reference Panel. I got in touch with the group facilitator and had a chat through what it was all about.
What activities have you been involved with?
I've done a number of different things. Sometimes it's something simple like checking a patient information sheet to make sure that it is written in layman's terms. Sometimes I attend meetings with researchers to talk through a particular research idea or to try out things that they're developing.
I also attend Liver and GI Patient Reference Panel meetings where researchers come to talk through their research projects. One of the projects was to give input from the patient point of view on an app where patients would record their symptoms.
Another activity was joining a virtual focus group to discuss the idea of giving patients a special diet before surgery to see if it would improve outcomes after surgery. The doctor suggesting the research wanted to know what we thought of the idea and how it would be best to go about doing the study.
What benefits do you have from being in the group?
It's increased my understanding of research and how the whole research process works to benefit patients. This is really interesting because I'm the kind of person who doesn't just like to take the doctor's word for something, I like to read up and understand the treatments.
I feel like I'm helping to make a difference to the way that my condition is treated in the future. Maybe I will benefit from that but definitely other people who are diagnosed in the future will benefit. I find this really fulfilling.
What would you say to others who are considering getting involved in research?
Absolutely get involved. You have an opportunity to make things better for other people who haven’t had their diagnosis. It’s not like being in a trial where you might have to take a drug, patient involvement in research doesn’t involve taking any risk. You can do it in your own time, maybe even just an hour here and there, as much or as little as you like. Sometimes it’s just casting an eye over something, sometimes something more involved like a discussion.
Most people would say research is just clinical trials but there’s lots of other things you can do, there are lots of different types of study and you can get involved in different facets of research. Learning about new developments can give you hope for the future, for your own health condition and help to get answers about what has happened to you.
Last reviewed: 06 November 2024