Clinical Trials

Time commitment, money and other practical issues

Some trials involved only a one-off or fairly short commitment from patients, and had little impact on their lives. In Caroline’s case, for example, the trial was testing the effect of a computerised decision-aid and required only minor practical commitment.
However, other trials made greater demands, and for a longer period: people had to think about a range of practical implications, such as travelling, time off work, holidays and money. No-one we talked to had been put off by the amount of time required for them to take part in a trial. But some had heard of other people who had said no for this reason, and it had made some people withdraw or think about withdrawing. (See ‘Thinking about withdrawing from a trial’).
Sarah commented on the arrangements she had to make to take injections with her on holiday during the trial “I even had to go on holiday, abroad - in fact it was my honeymoon - and I had to take the injections with me and have a letter to show at customs, in case they thought I was a drug addict.
 
The implications of physical side effects are discussed in more detail in ‘Side effects and queries’, but also had a bearing on practical issues such as taking time off work. In Wendy’s case below, the trial involved an extra six months of chemotherapy and side effects, and she had to stop working.
Elizabeth felt doctors did not always appreciate the level of commitment people were making.
Many people, of course, continued to work, and not all trials involved major side effects. However, attending regular appointments often still amounted to quite a commitment. Some mentioned supportive employers who allowed staff to take time off work for trial appointments. Others said they had to take their own annual leave to cover time off, or felt they could only take part because they were retired. Several commented that trials needed to be more flexible rather than expecting people to attend during the working day, especially when people are not seriously ill, or when taking part is mainly to help research rather than offering any direct personal benefit.
Most people were not happy with the idea of being paid to take part, and worried it might attract people for the wrong reasons.
Paying people to take part normally only happens in early-stage trials involving healthy volunteers, and even then it is more officially referred to as ‘compensation’. The level of compensation is dependent on trial length, inconvenience/disruption to normal life and possible discomfort involved, for example from having lots of tests. However, as Angela noted, people in other kinds of trials may also be offered some financial compensation. In this study, we interviewed only people who were taking part in trials because of a condition they already had, or as part of prevention or screening for health problems. While most were paid nothing or minimal travel expenses, some were paid other amounts, or had drugs provided free that they would otherwise have paid for. (See also ‘Reasons for taking part – personal benefit’). This was generally not a main reason for taking part, however.
There is considerable debate about how far it is appropriate to compensate people financially for taking part in clinical trials, and the term ‘expenses’ has many possible meanings. Covering people’s travel costs is common, and is usually seen as reasonable and ethical. Compensating people for their time is less straightforward. Some see it as acceptable, especially if a person has had to take unpaid leave, while others feel it constitutes a payment and may put pressure on people to take part.
 
A few people felt it may be justifiable to pay people in certain circumstances.
However, David wanted to get a message across to people that they should think again if money was their only reason for taking part.
Getting feedback about the results of the trial was often felt to be an important way of saying thank you and recognising the contribution made, and a possible incentive to take part again. (See ‘Feedback of trial results’). (See also ‘Reasons for taking part – personal benefit’ and ‘Reasons for taking part – helping medical science and other people’).
 
Last reviewed July 2015.

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