Charles – Interview 29
Charles volunteered for two trials, but ended up unable to take part in either of them. The first time he did not meet the eligibility criteria. The second time was because of an administrative mix-up about his age, and he feels it was not well handled.
Several years ago, Charles was invited through a letter from his GP to volunteer for clinical trials being conducted by a privately run clinical research centre. The first trial he volunteered for was one in which the company was looking for men at risk of prostate cancer. Charles suspected his father might have had the condition, and knew he was at an age when the risk of prostate problems is increased. He also had a friend who had prostate cancer. His family were keen that he should be tested, so he volunteered to take part. Initial blood tests showed his risk was very low, and so he did not meet the eligibility criteria for the trial. He was pleased to discover he was at low risk, but agreed to stay on the company’s database in case they had any other trials that he might be eligible for.
In 2005 he was invited to take part in a trial of treatment for erectile dysfunction in men aged 55-65. This would have involved being randomised to either a group receiving a placebo, or a group taking a drug similar to sildenafil (Viagra), but taken by nasal inhaler. The hope was that this would work faster than a pill, reducing the time you have to wait before intercourse. Charles thought this sounded useful and that he would like to try it. If he had been allocated to the placebo group he would have still found it interesting to see if he experienced any placebo effect. He also had to discuss it with his wife, because taking part in the study meant you had to have intercourse at least once a week. He discussed it over the phone with the trial staff and – as he thought – agreed to take part, and confirmed that he was eligible.
There was then a few months; delay until Charles was called again. He had a first interview appointment to discuss the trial in more detail, and was then asked to come back for a second appointment to have medical tests and sign the consent form. It was only after he had gone through the whole process that an administrative worker noticed he had had a birthday between the first and second appointment and had now turned 66, so he was no longer eligible to take part. He was disappointed to be turned down on a technicality after having got so far through the process.
Charles felt that he had been let down by the system and that it was not well handled. Although the doctor seemed apologetic, no-one else said sorry or wrote to him afterwards to apologise. He originally felt taking part in trials was an interesting project to keep himself busy after retirement, as well as something that could be of medical value to him. After his disappointing experience, however, he has been reluctant to respond to further invitations from the company to join trials. He might volunteer for a trial again in future, but it would have to be something that he felt would definitely benefit him personally.