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Consumer involvement in trials led by the MRC Clinical Trials Unit

14 March 2008

The Medical Research Council Clinical Trials Unit (MRC CTU) Cancer Group are currently working on improving consumer involvement within the CTU Cancer trials. In this context consumers are people affected by cancer – people who have had cancer themselves, those who have cared for someone with cancer and people who work in organisations that support people affected by cancer.

A group has been set up within the CTU Cancer Group with the remit of developing guidelines for consumer involvement within ongoing and future trials.

On Thursday 27th November 2007, 8 consumers involved in 12 of the MRC CTU cancer group trials attended a workshop at the CTU. The aim of the day was to give feedback to consumers about involving them in trials at the CTU and for them to give us feed back on what it's like being involved in the running of a clinical trial at the CTU and whether we can do anything to improve this experience.

There were short presentations from members of the CTU Cancer Group regarding the work of the MRC CTU and how it fits into the national clinical trials structure, the experiences the CTU has had with consumer involvement and how we should feedback clinical trial results to consumers.

The day was very useful for both CTU staff and the consumers involved in our trials. The outcomes of the day were very positive. There were discussions into public understanding of clinical trials and suggestions were made about the age range of patients involved and the outcome measures used in clinical trials. Suggestions were also made on improving the support for consumers on Trial Management Groups (TMGs) and a training pack was suggested. There was discussion on feeding back trial results to families as well as patients and the best ways in which this can be done. The timing of consumers starting work on a clinical trial was also discussed.