A systematic scoping review of the evidence for consumer involvement in organisations undertaking systematic reviews: focus on Cochrane

PLAIN ENGLISH SUMMARY: Cochrane is the largest international producer of systematic reviews of clinical trial evidence. We looked for published evidence that reports where consumers (patients and the public) have been involved in Cochrane systematic reviews, and also in reviews published by other organisations. We found 36 studies that reported about consumer involvement either in individual systematic reviews, or in other organisations. The studies showed that consumers were involved in reviews in a range of different ways: coordinating and producing reviews, making reviews more accessible, and spreading the results of reviews (“knowledge transfer”). The most common role was commenting on reviews (“peer reviewing”). Consumers also had other general roles, for example in educating people about evidence or helping other consumers. There were some interesting examples of new ways of involving consumers. The studies showed that most consumers came from rich and English speaking countries. There was little evidence about how consumer involvement had changed the reviews (“impact”). The studies found that consumer involvement needed to be properly supported. In future we believe that more research should be done to understand what kind of consumer involvement has the best impact; that more review authors should report how consumers have been involved; and that consumers who help with reviews should come from more varied backgrounds. ABSTRACT: Background Cochrane is the largest international producer of systematic reviews, and is committed to consumer involvement in the production and dissemination of its reviews. The review aims to systematically scope the evidence base for consumer involvement in organisations which commission, undertake or support systematic reviews; with an emphasis on Cochrane. Methods In June 2015 we searched six databases and other sources for studies of consumer involvement in organisations which commission, undertake or support systematic reviews, or in individual systematic review processes. All types of reports and evaluations were eligible. Included studies were combined in a narrative synthesis structured by the level of evaluation and the type of involvement. Results We identified 36 relevant studies. Eleven of these were evaluations at the level of a whole organisation; seven of these studied consumer involvement in Cochrane. Ten studies examined individual Cochrane review groups. Twelve studies reported on individual reviews; only two of these were Cochrane reviews. Finally, three studies were themselves syntheses of other studies. The included studies reported varying levels of consumer involvement across a wide range of activities related to review design and conduct. These included activities such as priority setting and outcome definition as well as review-specific roles such as acting as peer referees and producing plain language summaries. The level of satisfaction and awareness of impact was generally higher in studies focused on individual Cochrane review groups than in the organisation-wide studies. Conclusions There was evidence of highly variable levels and types of consumer involvement within and beyond Cochrane, but limited evidence for what makes the most effective methods and levels of involving consumers in review production. Where evidence of impact was found at the level of individual reviews and review groups it underlined the need for properly resourced and supported processes in order to derive the greatest benefit from the lived experiences of consumers who are willing to be involved. Where reviews do involve consumers, their contribution to the final result could be more clearly identified. More rigorous evaluations are needed to determine the best approach to achieving this. Trial registration Not applicable. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s40900-016-0049-4) contains supplementary material, which is available to authorized users.