Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material

We included six randomised controlled trials with moderate or high risk of bias, involving 2123 participants. There is moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety. This 'consumer-informed' material can also improve patients' knowledge. There is low quality evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results. There is low quality evidence that an informed consent document developed with consumer input (potential trial participants) may have little if any impact on understanding compared to a consent document developed by trial investigators only. There is very low quality evidence that telephone discussions and face-to-face group meetings engage consumers better than mailed surveys in order to set priorities for community health goals. They also result in different priorities being set for these goals.

There is little evidence from randomised controlled trials of the effects of consumer involvement in healthcare decisions at the population level. The trials included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of involving consumers in these decisions.

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