Clinical trials & medical research (young people)
What is involved in a trial: time commitment, costs and payment
The length of trials can vary from one day to several years, so some trials make greater demands than others. The demands of the trial and the practical implications, such as travelling, time off school and work, holidays and money, were things some young people talked about.
Young people described ways staff made it easier for them to take part, such as flexible days and times for appointments and combining research appointments with routine hospital visits. (See also ‘What is involved in a trial: appointments and monitoring’).
The doctors and nurses did their best to ensure any extra appointments fitted in with Kays...
The doctors and nurses did their best to ensure any extra appointments fitted in with Kays...
At some clinics, having toys, TV, books and games kept some younger people entertained whilst waiting for appointments or having treatments as part of the trial, and this helped make participation easier.
There were plenty of toys and magazines and a TV in the day room, but Jenna often took her own...
There were plenty of toys and magazines and a TV in the day room, but Jenna often took her own...
Whether the trial is being run locally or at a specialist hospital, extra appointments may be necessary and may mean extra travelling time and costs. In most cases, people taking part in a trial will be given money to cover any extra travel costs, but this may vary from trial to trial. Lois had to attend both her local and a specialist hospital which was further away, but she didn’t receive any travel costs.
At the beginning of the trial Lois had to miss quite a lot of school because there were lots of...
At the beginning of the trial Lois had to miss quite a lot of school because there were lots of...
The costs of travelling back and forth to hospitals in trials can mount up, but Alexander feels...
The costs of travelling back and forth to hospitals in trials can mount up, but Alexander feels...
Alexander was studying for his A levels at the time of the trial and had to organise his study...
Alexander was studying for his A levels at the time of the trial and had to organise his study...
Sometimes young people miss school to attend appointments, and a few young people we talked to had to give up their college course. In some cases, young people mentioned the Macmillan nurses had helped them find college courses and study options that they could do when they were feeling better.
The Macmillan nurses were really helpful when Eden had to stop her college course.
The Macmillan nurses were really helpful when Eden had to stop her college course.
Some trials may require you to keep a record of your health at home. Young people talked about how they had to organise this around their other activities, and how they had to remember to take extra medication, which felt like quite a responsibility.
Taking extra medication sounds easy, but it is easy to forget and Joanna was worried in case she...
Taking extra medication sounds easy, but it is easy to forget and Joanna was worried in case she...
With the trial?
Yes.
It has been a struggle. And if you forget it, you get so stressed about forgetting it and worried in case it’s affected it in any way. Things like, you know.
You think you might have affected the results of the trial?
If you, yes, if you forget, forget it. And it, you stress over that and then think, “Maybe I should leave the trial.” But then you’re thinking, “Well, it’s probably the best thing for yourself and for the other people.” Because there’s not that many people who can do, be in the trial.
And when you did forget, if you tell them, do you think that’s, would be the key thing? To sort of, if you do forget or something like that, or if you&rs
A few young people said they had not realised how time-consuming it might be when they first agreed to take part.
Keeping a diary and recording her blood glucose levels required a bit of organising, and was...
Keeping a diary and recording her blood glucose levels required a bit of organising, and was...
There may be times when extra appointments are unevenly spaced and sometimes monitoring can be quite difficult and time consuming, whilst at other times it is straightforward and can be fitted into normal routines.
Although Robert understood the need to be monitored and having extra tests, there were times when...
Although Robert understood the need to be monitored and having extra tests, there were times when...
So the run in study for the multi dose trial is just one appointment every four to six months I think so that’s just occasionally going in and they do this whole load of tests. And the idea is that they’ve done it over 18 months so they can then plot your progress but that’s just once every four to six months. And in fact on more than one occasion with those I’d managed to coincide them with my regular outpatient visits as well. Because they do a lot of similar tests so it just meant a longer day in the hospital when I got everything done. But the pilot study with the single dose of gene therapy that was quite involved so over the space of a month I think I went in six or seven times. And the bronchoscopy, there were two, two bronchoscopies for which you have a general anaesthetic and I had to take an overnight bag, to be prepared to stay overnight if I needed to. And likewise the day when I actually had the dose of gene therapy I had to be prepared to possibly stay overnight, so those three were all full days in the hospital. Whereas the other visits were, were just for taking results and measurements from you. But, and it was, they weren’t evenly spaced either as well. So for instance, so I had the day of the dosing and then the next appointment was two days later to see what the very short term effect is and then there’s one, you know, three days after that and then they got further and further apart but it meant there was, you know, one week that was very intensive with time in hospital.
Some young people received a small payment or voucher as a ‘thank you’ for taking part. In most cases this was a surprise and the majority of young people did not take part in a trial because payment was offered. Sometimes payments are offered to healthy people who volunteer for first time in human trials (Phase 1 trials). Some young people would have been concerned if money had been offered as an incentive for taking part and some would have been insulted had money been offered. Some felt offering payment would attract people for the wrong reasons.
Payment for taking part in the trial was not the first thing on Stephanies mind, she wanted to...
Payment for taking part in the trial was not the first thing on Stephanies mind, she wanted to...
For some trials, a payment may be appropriate says Mohini, but for many trials knowing that...
For some trials, a payment may be appropriate says Mohini, but for many trials knowing that...
Payment for taking part in trials can be a good thing, but it can also attract people to take...
Payment for taking part in trials can be a good thing, but it can also attract people to take...
It’s just that there’s, sometimes there’s a debate about paying young people to take part, whether it’s good to encourage them. But, like you say, it might be for the wrong reasons?
Yes, well, the, you can get paid for the normal drug trials, like the first human trials. I think that’s different again because you’re paying someone to risk their life. But then you could argue it’s like the army or anything along those lines. So you can constantly be in this vicious circle of, “Is it right? Is it wrong?”
For some young people there was a feeling that being paid to take part might lead people to think that there was a substantial risk involved and this would have made them more cautious about taking part. Chris and Heather took part in a research study as healthy controls. (See ‘Other types of medical research.’) Payment wasn’t important to them in taking part in the study but they say that money might be an incentive for some young people.
Chris would be more cautious about taking part in trials that offered money, but having a reward...
Chris would be more cautious about taking part in trials that offered money, but having a reward...
Payment shouldn't be an incentive for taking part in research, but Heather can see that it might be necessary for some types of trials.
Payment shouldn't be an incentive for taking part in research, but Heather can see that it might be necessary for some types of trials.
Some young people we talked to said that payment might be appropriate to attract healthy people to take part, but when you have a long term illness helping others is more of an incentive. For some who were starting work, payment for time off work might be something they would have to consider if taking part in future trials.
Payment for healthy people to take part might be appropriate, but helping others was incentive...
Payment for healthy people to take part might be appropriate, but helping others was incentive...
Sometimes young people received a voucher (such as Love2Shop) as a way of saying thank you for taking part. The majority of young people felt that this was a nice gesture and only a few felt that payment might be an incentive to take part.
Receiving vouchers at the end of a trial wasnt the reason Saskia took part, but she says if you...
Receiving vouchers at the end of a trial wasnt the reason Saskia took part, but she says if you...
If she had the option, Georgia would prefer a voucher as a thank you for taking part in research, but telling the researchers about her arthritis was more important.
If she had the option, Georgia would prefer a voucher as a thank you for taking part in research, but telling the researchers about her arthritis was more important.
Katie knew she was going to receive a payment on completion of the trial and although she was...
Katie knew she was going to receive a payment on completion of the trial and although she was...
Katie has now had to stop participating in a trial due to poor health, but she is hoping to re-start as soon as she is better (see ‘Deciding not to take part although eligible to take part in a clinical trial’).
Last reviewed March 2017.