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Clinical trials & medical research (young people)

Reasons for wanting to take part: helping medical science and others

Many young people we interviewed said they took part in trials for a mix of reasons, including helping themselves and others and helping medical science. In this section we focus on helping medical science and others. (See also ‘Reasons for wanting to take part: personal benefit).

All the young people we interviewed had a condition or were healthy volunteers for trials of preventive care such as vaccine trials. The idea of improving care and making life better for other people in the future was a common reason for wanting to take part in trials. Helping advance knowledge was felt to be positive thing. 

 

Having the opportunity to contribute to medical research and help to prolong the lives of people...

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Age at interview: 23
Sex: Female
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What’s your experience been across all three of taking part?
 
Quite positive. It’s quite nice to know that I’m, although I do think of it selfishly sometimes I do want my lung function to improve or I want to have the best quality of life. I do think of it, it’s quite a good thing for other individuals for that are growing up, you know, this might be the future, I might be trialling the future treatments of those that are growing up with problems. So I think it’s quite nice to be involved in something that might benefit other people with CF when they’re older. So my feedback is really positive about the clinical trials just because I’m benefitting from it, others can benefit from it, I’m getting paid for some of them and I’m helping out my CF Team, so I’m generally quite happy. Yeah.
 
Lots of different reasons for taking part and thinking about the motivation to take part, going in, and you know the real why am I doing this? Why am I taking this drug that I don’t know?
 
I think, there are, I think when you’ve had such a, I take many medications a day. And I think if you want to, I’ve done everything in my power to try and make my health as good as it can be and I do, I strive to have the best health I can and I do everything in my power. And if I think that maybe a drug could help that then I’m willing to try it. And yeah, there might be side effects, but you can get side effects from lots of different things, you can face them in the environment. So I don’t think it would be publicised by my CF Team and doctors if they thought it would really be a negative kind of experience, they’re trying to prolong people’s lives and I think medical research is the, is the way forward and if I can help with that then I’m quite happy to do that. I don’t know like, both the Heparin and the Mannitol have improved my lung function and I can’t be more thankful really.
 
And it’s nice that I’m in the position that I can do that because my lung function is kind of stable whereas other people haven’t got that opportunity. Some people aren’t as well as me and they don’t have that opportunity to try these medications out soit’s quite its quite nice.
 
Does it make you feel important, not important that’s the wrong word, but you know like you say you’ve got that opportunity?
 
Yeah, I think if you’re offered something that’s possibly going to be beneficial then I think it is important to grab it with both hands. Because it’s good and it means that if there are new medications that are coming for the other CF patients, they might consider me if I’ve been quite compliant with clinical trials that have happened before so, no I think it’s good.

 

Wanting to help others who may be diagnosed with similar conditions in the future was a common reason for taking part. They talked about directly helping other young people like them, and also more generally contributing to medical research and improving our understanding of conditions and treatments. 

 

Knowing others who have cystic fibrosis related diabetes was a key reason Sophie took part in a research study

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Age at interview: 23
Sex: Female
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And I think, I believe that the benefits of taking part in this is as I said for me personally hopefully I won’t actually develop CF related diabetes in the near future and hopefully, hopefully never, but I know that there are people, I do have a friend who does have slight issues with her blood sugar levels and this, this research will be really useful to see if it is something that will benefit people with cystic fibrosis and it can help people, you know, it may become used more frequently and it may be a good thing for people that are struggling with their blood sugar levels. So that’s why, that’s why I decided to take part. 

Several mentioned how grateful they were for the treatment they had received (See Kay’s story above) and for the contribution other young people made to research (see Joe and Joanna’s story below). Taking part in research could be a way of feeling they were giving something back, and help them get something positive out of their illness.

 

Taking part in research has helped Joe understand his condition, and he wants to improve things...

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Age at interview: 15
Sex: Male
Age at diagnosis: 15
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In what way do you think it was going to help you and help, help research?
 
Joe' I think it would just help me to understand diabetes and like how to deal with it more, because I was really shocked when I found out. And it did, the research is, because I’ve been through the, you know, the shock of having diabetes, and when other people get diagnosed it’s just like unexpected and stuff. And the research will help people deal with it I think.
 
But they, you had the opportunity to have that time to think about it?
 
Joe' Yes, I had a bit of time. I just, I think it’s better to, for the research anyway, because I’ve been diagnosed and it was a big shock. I know how that feels. And just I want people to understand more and I want everyone to understand more and just make it better for the person who’s got the problem.
 
And how will you feel do you think at the end. It’s a bit difficult to say?
 
Joe' I think I’ll feel like I’ve helped, I’ve helped other people. Like I can just imagine myself back in that position when I got diagnosed and I can just imagine now that, I mean now I’ve done it, that I’ve helped other people. And I hope other people will be willing to participate in some research as well, just to help other people as well.
 
Mum' I think it make, makes you feel good to think you’ve helped, doesn’t it? It’s nice, you know. Because some people wouldn’t. But it’s nice, especially at that age, for them to think, “No, I want to give some input.”
 
Joe' I think with the research it just helped, it has helped me to deal with it a bit more, because just the fact that you know other people are doing this for you as well. So, you know, you might as well chip in and help.

 

 

It is helpful for Stephanie to think some good for others may come out of her own illness, and...

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Age at interview: 18
Sex: Female
Age at diagnosis: 15
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I felt like, yes, I did feel like that if I could help someone and someone could have, you know, a much easier road to recovery because of something that I did, it made me feel a bit better about it and that my suffering, being sick was worth it for someone else.

I don’t really know. Not particularly with clinical trials but, because I didn’t even, I didn’t even notice I was on a clinical trial, to be honest. It made no difference to me. Getting better is getting better, whatever you take. So, but I’m just happy that it could help other people maybe in the future and get a bit more funding for a drug that’s worked really well for me. So hopefully it will work well for other people and kind of reduce the suffering that some, some of the other drugs might produce. And if it can kind of ease the pain of an already painful situation, then that’s worth it for me.
 

Young people often said that being in a trial was worth it to help find out if new treatments work, even if there were some side effects or discomfort involved.

 

Robert urges others to see past any side effects or discomfort involved in trials and take part...

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Sex: Male
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I think a barrier might be, so as I said when I was younger we didn’t do anything where I had to have another blood test. So if there’s a particular procedure involved that you don’t really want to do then you’re very free to say no. But even if it’s something that only, you know, that only mildly inconveniences you, like I had to have these bronchoscopies, you know, it’s not exactly a fun thing to have but you think well it’s worth it to put myself through that for the benefit that the trial gains from it. Or I mean there was another, with the pilot study they had this worst test ever, they had like a wire pipe cleaner brush that they’d stick in your nose and go whoosh and take it out. And it’s really, really uncomfortable and oh it was horrible but in doing so they got a million epithelial cells from each nostril doing it so, and the doctor doing it said “I know these are horrible we’ve done them on, we’ve done them on ourselves as well” but the amount of data we get from it is incredible. So I think perhaps sometimes maybe for young people to try and see past the, you know, slight uncomfort they may have to go through for the greater gain that it brings yes. And I think as, as a facilitator as I said being a young person on the gene therapy trial if I’ve got a chance of being one of the first people to have gene therapy and then to be on that drug then that’s a, a really great opportunity for my health. So even though that’s a yes it’s not a financial incentive it’s still a really good incentive to take part. 

 

Katie took part in a phase 3 trial because she wants to see the new treatment approved in the UK...

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Age at interview: 13
Sex: Female
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What were your key reasons for taking, wanting to take part?

Because I make sure the medicine, because it’s only approved in America at the moment, so we’re trying to get it approved in this country and Europe. So in the UK and Europe we’re trying to get it approved so people can get it, but because it’s for people that aren’t very well as well I think at the moment but we’re just saying what’s the point of getting it you have to wait to get ill first so we’re just trying to get it through for that because it’s well people they’re testing it on now. Because it’s in the third phase, the trial.
 

Phase 3 trials are usually large. They include hundreds or even thousands of patients. They often compare the effects of new treatments or drugs with standard treatments, if there are any. They provide more reliable evidence about whether newer treatments are better, or worse than existing treatments, and firmer evidence about how common and serious any short term side effects are. Almost all Phase 3 trials are randomised trials. In a randomised trial, some people are given the new treatment; others are given an existing, standard treatment. If there is no standard treatment, the new treatment may be compared with a placebo. Some randomised trials may compare more than two groups and some may be blinded. The UK Clinical Research Collaboration booklet ‘Understanding Clinical Trials’ includes a useful section on the risks and benefits of trials.

Some trials (for example vaccine trials) require healthy people to take part. We spoke to some young people who took part in Swine Flu and Meningitis C vaccine trials. (See also ’What is involved in a trial: appointments and monitoring’.) Helping to prevent future childhood illnesses and protect the health of the wider public was a reason for taking part as Will says' “...helping like the doctors and the nurses decide which one they were going to put out on the public”.

Last reviewed March 2017.

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