Clinical Trials

Communication between different health professionals

Current ethical guidance is that if you agree to take part in a clinical trial, all your trial records and any information that is collected about you will be kept confidential, in the same way as your medical records. The researchers cannot tell anyone that you are in the trial without asking you first.
 
But there are potential advantages in making sure, for example, that your GP and any other staff involved in your care know you are taking part and are aware of any issues that may arise. On the other hand, trial staff may be in a better position to deal with queries and side effects arising from new treatments.
When communication works well, people may not even think about it much or be aware it is happening. Often it is only when communication problems arise that people realise how important it is. Several people we talked to gave examples of when things had gone wrong.
 
Sarah volunteered for a trial of treatments for osteoporosis. As she had broken several bones she thought this might apply to her so she volunteered. The trial screening process found she did indeed have osteoporosis and so was suitable for the trial. She agreed that her GP should be told about this but in fact the message never reached the surgery.
Others also noted that even with the best will in the world, communication between the trial and the GP was not always perfect.
Amanda was upset because her GP was contacted without her consent.
It is important to note that this trial was conducted some years ago, when guidelines on consent were perhaps not as well-developed as they are now, but even at the time Amanda thought it was unethical to tell her GP. As noted above, information about a trial may only be given to the GP with the person’s consent.
 
The trial may ask your GP to pass on information about you, perhaps as part of long-term follow-up to see what happens to people who took part. Again, this should only be with permission, which may be asked at the start of the project or later on.
Some people discussed the trial with their GP or another doctor to help them decide what to do.
However, not everyone thought their own doctor had the time or interest to do this. Joanna commented “I think you do need to find someone who has the time to explain to you what it’s about…..I’d like to think that a GP could be revved up to take the sort of practical interest. I have to say my own, who is a wonderful guy, he backs off when it’s a question of talking about research.”

Last reviewed July 2015.

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