Consumer involvement in the development of healthcare policy and research, clinical practice guidelines and information for patients

The importance of consumer involvement at all levels of the health services is widely recognised. This review shows that little research has been done to find the best ways of involving consumers in healthcare decisions at the population level. Most of the included trials compared consultations with consumers with no consultations with consumers. There is moderate quality evidence from two trials that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable, without affecting anxiety. This 'consumer-informed' material can also improve knowledge. Two trials, which compared using consumer interviewers with staff interviewers as data collectors for patient satisfaction surveys, found small differences in satisfaction survey results, with less favourable results obtained when consumers were the interviewers. One trial comparing two informed consent documents, one developed with consumer input and the other developed by the trial investigators, showed that consumer input may have little if any impact on understanding of the trial described in the consent document. One trial, comparing two different methods for involving the public (telephone discussion and a face-to-face group meeting), showed that a face-to-face meeting is most likely to engage consumers and may result in different community health priorities.