Taking part in Clinical Trials
Participation in research is where someone takes part in a research study, for example, being asked questions about their health condition or testing a new treatment in a clinical trial. People may be asked to consider joining a study by their GP or come across an advertisement to join a trial on a noticeboard or in a newspaper.
The NHS website NHS Choices has written some very clear information about taking part in clinical trials and issues to consider before taking part in health research.
We regularly receive positive feedback from patients involved in our clinical research studies:
“To whom it may concern,
I’ve been suffering with IBS for years. I was officially diagnosed in 2011 though had been suffering most of my life. Before I started the research programme my IBS was really bad. I was constantly having accidents, sometimes going up to 7-8 times a day. It was affecting my work and personal life.
Since I started doing the research programme it has changed my life so much. I haven’t had an accident in two months, feeling so much better in myself. I have bowel movements up to three times a day even going 24-48 hours without a bowel movement. I haven’t felt like this for a long time. It’s made me feel like I could have a normal life again. Please can this drug be available on prescription. It would improve my IBS so much and make me feel like a normal person again.”
Below is an interview between our local Clinical Research Network and one of our patients, who has participated in a couple of trials at the Research Unit.
Tracey Cridge, 55, lives with her husband in the Yate/Coalpit Heath area of South Gloucestershire. She has lived in this area her entire life and has had asthma since she was a child.
Her local GP surgery is West Walk Surgery, Yate, that is renowned for its success in undertaking commercial clinical research.
Could you tell me how you found out about taking part in the research studies?
I think it was Dr Davies who wrote me a letter to ask whether or not I would be interested. Some literature was also sent about the study for me to read. There was no pressure or anything about taking part in the study. It was just a matter of reading through the information I was given and if I was interested to give Dr Davies a call back, which is what I did.
Could you tell me a little bit about your condition and what it is like to live with your condition?
Compared to some patients I am quite lucky as long as I stick to using my inhaler. Most of the time I am okay however in the winter my asthma tends to develop into a chest infection and I get quite poorly then. Over the last couple of years it has tended to get a bit worse, so my doctors have tried using different inhalers at different strengths. So when I was approached about the research study I thought, ‘Oh there might be something out there that helps me even more,’ which is the main reason I thought you know what I’ll give that a go!
Could you tell me about the research studies you were involved with?
I started with the asthma study where I was given a little gadget that I was required to put information into daily. The information was sent back to the staff at West Walk Surgery via a computer. I’m not very technical but I was putting information in. I had a few visits and then at the end of the study they sent out a feedback form to ask how I had got on with the study. The visits were nothing major, really. The only major visits to West Walk Surgery were right at the beginning and at the end. The visits really took no time at all as most of the time they were keeping track of my health by the information you were putting into the system.
I also took part in another trial for irritable bowel syndrome and that trial was even more simple, really. I was given one course of treatment for eight weeks however you don’t know what that is, it could either be the actual treatment itself or a placebo. You then go back to the clinic and you are then given a further eight weeks of the treatment they are trialling. In between the trial you are given forms to complete. Taking part in this trial was really helpful; I could tell for myself that there was a difference before and after treatment.
What made you decide to take part in the research studies ?
I was contacted by phone regarding the IBS study and I think that because I had already done the asthma study I thought, ‘Why not?’. I was also being prescribed different treatment for IBS at the time and didn’t feel that the treatment was working. I think this is because when I was taking part in the asthma study I found that it was keeping the asthma at bay and did the job. But the IBS trial in my opinion worked better than the treatment I was previously on. The asthma trial I viewed as a trial for helping other people but the IBS trial helped me personally. The treatment I was trialling wasn’t actually for IBS but was for patients with diarrhoea, but they found that it was helping people with symptoms of IBS. It wouldn’t have have been something that they would have initially given me if I hadn’t been on the trial. So overall I was very glad I took part in the study. I learned more about asthma and IBS from taking part in the studies, so that was another benefit.
What were your expectations when you were first asked to take part in the research studies?
I wasn’t nervous about taking part in the study at all. The staff at West Walk go through all the details with you and asked if you had any issues regarding the study. The staff are very nice and friendly throughout the whole process. The tests that were carried out were nothing different or stranger than normal, it was overall very relaxed throughout. There was no pressure to take part in the trial and they reassured me that anytime I didn’t want to take part anymore I could opt out from taking part in the study.
Overall how did you find the experience and would you take part in research again?
Overall I had a good experience and I think that if I was approached about taking part in other research studies I would do it again. I was always able to fit appointments around my lifestyle and work, so yes, I would.
Where you aware of the opportunity to take part in research before you were approached?
No not really, before the asthma study I had never heard about the opportunity to take part in research studies.
Do you think it is important for people to take part in research and if so why?
I do think it’s important as you wouldn’t know about new treatments if you didn’t do research and so it’s really important for people to take part in research. Sometimes you may get an opportunity to take a course of treatment you wouldn’t have originally have been offered. It could potentially be given to patients in the future. I’ve said to other people with health conditions that research might help them. I know time is precious to people but you don’t have to go up to the clinic every day, most of the information is collated from home. I know it may not affect me so much but say for example it was someone who was worried about fitting appointments around their children, it really doesn’t take a lot of your time. I found the whole experience of the trial to be really convenient.
Would you recommend taking part in research to others?
Yes I would. I normally talk about taking part in research at work and people seem to really be interested. My family have never really heard of or known anybody who has taken part in research before, neither have my work colleagues really. I had heard about research being done within hospitals but I never knew research could be carried out through your local GP practice and health centre that is until I was approached about taking part in the studies.
What would you like to see for the future of research and healthcare?
That research continues and is more visible so that people realise that it is going on.