Clinical Trials

Messages to professionals

Many people had things they wanted to get across to health professionals such as doctors, nurses and researchers. A lot of these messages were about the way people were first told about trials and the kind of information they were given. (See also ‘Information and questions’, ‘Being asked about taking part in a trial’ and ‘Difficulties finding a trial to join’).
 
Gill wanted to encourage doctors to offer people a chance to be in a trial.
A few people felt researchers had been too keen to get people to agree to be in a trial. In Polly’s case, she felt the doctor “was just slightly more interested in getting people onto his trial than stopping to think very hard.”
On the other hand, Angela explained how important it was to her to have been offered this chance.
Angela is an example of someone who felt well-informed about the trial (even if, as she says, “I may have forgotten since”). However, there were many comments about the need to improve the kind of information given out. People wanted information to be explained face-to-face as well as in writing, in clear, simple language. They wanted doctors to be as open and truthful as possible, and to be sympathetic to patients’ concerns.
However, it was recognised that not everyone will want the same degree of information. Some people wanted to have a lot of detail, while others wanted things summarised.
Another message for staff recruiting people to trials was that it was important to be flexible about offering appointments to fit in with people’s working commitments. (See also ‘Time commitment, money and other practical issues’).
A similar range of messages came up in relation to people’s care during and after a trial. Wendy felt she was not given enough explanation about who would be caring for her during the trial, while Joanna wanted more feedback about trial results. Both pointed out that staff often seemed too busy to give enough time for discussion and questions.
Again, people liked it if staff adapted the way they communicated depending on each person’s needs and preferences, but some felt staff were not always as flexible and responsive as they could be. (See also ‘Feedback of trial results’).
Danny also pointed out that sometimes the language used about trials by professionals can mean something rather different to patients. In particular she disliked the word ‘excluded’, as someone who had previously worked with disruptive school pupils. “Where I come from, in my language exclusion’s bad, you know. You get excluded from school for doing bad things.” The term ‘failing’ eligibility screening could similarly give people an unintended negative message. (See ‘Why people may not be eligible to take part in a trial’).
 
At a more general level, Sarah put in a plea for straightforward language, and putting things “in layman’s terms, because we don’t all understand what x’s and y’ and equals means. Should do from algebra lessons, but it doesn’t mean a lot.” But she also had a message about the need for better communication between trial staff and the person’s GP.
Finally, there were messages about the need for greater professional awareness of and support for clinical trials. Fenella felt strongly that more clinicians should get actively involved in research to improve care for their patients. “If you’re not involved in research, why aren’t you? Go out and get some training or go to some lectures and get out of the rut. There’s something very exciting about research, and I think that it’s about doing the very best you can.”
 
Since being in a Phase 2 trial himself 15 years ago, Tom has become a consumer representative in Scotland advising on research. He believes it is important people are given the right information and are able to challenge what they are told.

Last reviewed July 2015.

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