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Involving patients and the public can benefit clinical research

27 March 2012

Results of a survey from the MRC Clinical Trials Unit, published in the journal Trials, show that researchers think involving consumers has benefits in clinical research. Consumer involvement is the active involvement of patients, carers, members of support groups or charities or other members of the public in the design and conduct of clinical research.

The study was a survey of researchers based at the MRC CTU. The results showed that most often, consumer involvement centred on membership of study management or steering groups and activities associated with those groups. These activities included developing patient information and disseminating or promoting the study.

Researchers thought that consumer involvement in their studies had five main benefits that included improving the study design and recruitment; promotion and dissemination; documentation and decision making and making them feel confident about the research. However, researchers also noted that there are some challenges to involvement including extra time or resources needed and lack of formal training or support for involvement.

The survey looked at 138 studies, including randomised and non-randomised trials and systematic reviews. Only 43 of these studies reported having any consumer involvement. Although there was evidence that involvement had improved over time, researchers at MRC CTU are looking at ways to further improve consumer involvement in current and future research.