Communicating with future trial participants
We ran a focus group with people affected by cancer, in partnership with the Medical Research Council Clinical Trials Unit at University College London (MRC CTU at UCL), to explore how we could improve the updates and results trial participants receive at the end of their participation in a clinical trial.
We know that the amount and type of communications trial participants receive at the end of a clinical trial varies. Some are disappointed by what they do receive and others receive nothing, often making them feel a sense of abandonment.
9 people affected by cancer, who all had different experiences of cancer clinical trials, came together at our focus group to discuss the information they did and would expect to receive. They based this on their own trial experience and we soon discovered that the majority of the group had not received any information about the outcomes of the trial they took part in.
The group identified key information that they would have liked to have received about the trial(s) they took part in, including:
- The overall number of patients who took part in the trial
- Clear summary of results which is written in plain English and patient focussed
- The limitations of the trial and any challenges e.g. side effects and the seriousness of these
- What had happened since their pariticipation e.g. further arms of trials
As well as helping us to understand the information people on clinical trials want to receive, the focus group clearly showed us that we can do more to raise awareness of the information that Cancer Research UK already provides about clinical trials.
I felt involved throughout the day and thought my comments were valued and that my opinions and thoughts were listened to. - Focus group attendee
Using the feedback we received, we'll work with the MRC CTU at UCL to develop and test new ways of reporting trial results back to the patients who take part in them.