Clinical trials & medical research

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’).

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.

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.

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.

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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.

A few young people said they had not realised how time-consuming it might be when they first agreed to take part.

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.

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.

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.

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.

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.

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.

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