Clinical Trials

Feedback of trial results

Current guidance is that at the end of a trial the results should be made available to everyone who took part, if they want them. They should also be published so that the wider community can use them to guide decisions about treatment and care.
 
Most people we talked to felt strongly that this was important, and several gave examples of good practice. People were glad to see what their contribution had led to and what it would mean for health care in future.
As well as finding it rewarding to see the trial findings, many people felt it was their right, and saw it as an important sign of respect and thanks for what they had contributed voluntarily. It was also seen as a way of encouraging people to take part again in future.
Elizabeth pointed out that sometimes the results will show the new treatment or drug did not work as hoped. In this case people who have had high hopes that a treatment may help them, and may have experienced significant side effects, will need some support in understanding and accepting the results. They will probably find out one way or another through the internet, so it is better to make sure they get a full explanation and support from trial staff. On the other hand, those who were allocated to the standard treatment will be reassured to realise that they had avoided the problems caused by the new treatment.
It can of course be difficult to understand complex medical and statistical information, though as Sue’s experience (above) suggests, trials can provide an easy to understand summary as well as the full results. It was recognised as important to give people a choice, because, as Julian, said some people would rather not know about “the technicalities of obscure and maybe worrying things”. However, several people who wanted to know either could not remember being told whether they would be given the results, or felt it was something they actively had to ask for, rather than something that would be automatically offered as a choice.
As Merilyn and Anthea explained, they wanted to know how the trial was progressing while it was still happening. However, incomplete results can be misleading. Researchers need to analyse all the results and it can take a long time to get to reach a final, reliable analysis. (See also ‘Funding and publishing trials’).
However, some types of information can still be provided, which can help maintain people’s interest and motivation.
Fenella suggested that sending regular postcards to trial participants could be built into the funding for a project. Joanna also noted the importance of making sure research budgets included the cost of feedback.
As well as getting overall results from the trial, people were keen to know their own personal results. Julian was also interested to know how other patients in the trial were doing – several people said they enjoyed meeting other patients in the trial, but others had little contact.
A few people said they were interested only in their own results, not wider trial results. However, some people reported problems getting their own results. Danny was particularly upset at the way one medical researcher would never tell her what her blood pressure measurement was. She found this patronising.

Last reviewed July 2015.
Last updated July 2011

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