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

A systematic scoping review of the evidence for consumer involvement in organisations undertaking systematic reviews: focus on Cochrane | Research Involvement and Engagement | Full Text

                             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.