So what’s it like to be involved in a clinical research trial?
People across our region have kindly shared their experiences with us to help you understand the many ways in which you can get involved in clinical research trials. You can click on the “watch the full story” below each photo to hear their stories on our makingresearchbetter Vimeo channel.
If you’ve been involved in a clinical research trial, and would like to share your story, we’d love to hear from you. Simply click on the ‘Share your story’ button below for details.
"It's a good way to help out the researchers...what you have to say to them means a lot"
Sam became involved in research during his transition from children’s health services. He wanted to remain connected to the support he had received for his Aspergers during his childhood. Sam felt he had something of value to give to the research team and that his input could be of benefit.
"it used to do me the world of good....and everyone is sharing. It's really good"
Christine became involved in a clinical trial that explored the impact of exercise on the symptoms of depression. Christine felt that any research that tackles issues of depression has to be a good thing and she felt strongly that someone needed to take part….and she was glad it was her. Christine really felt she benefitted from taking part in this valuable clinical trial.
"without research we can't move forwards...it also occurred to me that one day I might need treatment myself and you are relying on other people's help to do that"
Linda took part in a clinical trial as a healthy control participant. Linda wore a heart monitor for 24 hours and her ‘data was compared to people who were experiencing falls. Linda felt very proud to have been able to take part in a clinical trial and would recommend it to others to do.
"I benefitted from research; I'm here, I'm talking to you. That's proof in itself."
John had a serious bike accident in the 1970’s and tells us that without medical research he wouldn’t be here today. John also tells us of his plans to donate his body to medical science when he dies to continue his pledge to further medical understanding.
"This research project is really useful. It won't help Sam now, but it will help families in the future."
Andrea has been involved in a clinical trial with her son Sam. Andrea wanted to be part of this research because she felt it was important that highlighting issues they had faced as a family would help improve services for other families in the future.
"i can't go out and save somebody's life...but I thought this could be something I could be part of that would help people."
Jean, Ella and Ann all took part in the Million Women Study, a huge clinical trial that collects data on the effects of hormone replacement therapy use; the large size of the study of course means that a very broad range of health issues are also addressed.
The ladies felt it was great to be involved in something big that helped others.
"I found that I felt I could offer something with my background and maybe help people in research from a lay perspective"
Derek had both a personal interest in research as a carer for his wife who had Parkinsons and as a retired dentist with a lifelong interest in dental and medical trials. Derek believes that lay representatives in clinical trials have a valuable role in informing researchers of what a disease or condition is like to live with.
"we had always said as a family that we would be very open to research. We felt it was something we wanted to be part of."
Deidre became involved in Huntington’s research because of her father. It was very important for Deidre to be part of something that was ‘part of the bigger picture’. Deidre has gone on to be part of steering committees and end of life research.
"I became involved in research because of my illness. I found research a great comfort to me."
Christine became involved in research because of her diagnosis of Parkinsons. Christine has been involved in clinical research and personal research focussing on issues around Parkinsons.
"with this condition you have a higher risk of getting stomach cancer...this way they are keeping me regularly observed...why not go and do it?"
Iain became involved in Barrett’s Oesophagus Surveillance Study as someone living with Barrett’s Oesophagus. The study involves regular endoscopy observation which were routine to Iain’s usual treatment and care. Iain appreciates being in the study not only because he views it as being no more of a bother than his normal treatment, but because he feels he is more closely observed for early signs of stomach cancer.
"this is the sort of thing that will help all age groups in the time to come"
Jean became involved in research after receiving a letter from the GP asking for her to ‘get involved’. Jean felt that this would not only help her as she felt it would address some of her concerns about, for example, osteoporosis, but would help all age groups in the the future.
"I had more time on my hands, thought I could help future people and possibly even help myself"
Les became involved in research after speaking with his friend. Les took part in a clinical trial that was looking at whether taking a certain drug helped with memory. Although apprehensive about being in a drug trail Les talked with the research teams who gave him lots of information about how the trial and the drug being tested. Les felt that being part of the trial was worthwhile and could help people in the future as well as possibly helping him in time.
"I saw an advertisement in the newspaper asking for women to apply (for a clinical trial)...I did it for peace of mind"
Val became involved in a clinical trial after reading a call for participants in the newspaper. Val tells her story of her participation in the trial about screening for ovarian cancer and why she feels it is such an important area of research to be involved in.
"I would definitely do it again without a shadow of a doubt. If the letter came again I'd be there..."
Judy became involved in a clinical trial trial after receiving a letter telling her about a study screening ovarian cancer. Judy felt the benefits of being involved in a study meant she received a M.O.T every year and could tick ovarian cancer from her ‘list’ of things that “could go wrong”. Judy felt the trial was ran very well and would take part again.
"we're looking forwards to working with patients and their families and getting an enthusiastic group of people together"
Sam is a clinical research nurse in cardiology. Sam works with patients and their families and has been instrumental in setting up a ‘research interested ‘ patient group. Having patients and their families involved in research is really important to Sam and to cardiology research as it is their involvement that brings about research topics and themes.
You can go to the cardiovascular disease page in this website to learn more about ‘getting involved’ in Sam’s group.