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.

中文翻译：

---

对消费者参与进行系统评价的组织的证据进行系统范围审查：关注 Cochrane。

简明英文摘要 Cochrane 是国际上最大的临床试验证据系统评价生产商。我们寻找已发表的证据表明消费者（患者和公众）参与了 Cochrane 系统评价以及其他组织发表的评价。我们发现 36 项研究报告了消费者参与个人系统评价或其他系统评价组织。研究表明，消费者以多种不同的方式参与评论：协调和制作评论，使评论更容易获得，以及传播评论的结果（“知识转移”）。最常见的角色是评论评论（“同行评审”）。消费者还具有其他一般作用，例如教育人们了解证据或帮助其他消费者。有一些吸引消费者的新方式的有趣例子。研究表明，大多数消费者来自富裕的英语国家。几乎没有证据表明消费者的参与如何改变了评论（“影响”）。研究发现，消费者的参与需要得到适当的支持。未来我们认为应该做更多的研究来了解什么样的消费者参与最能产生影响；更多的评论作者应该报告消费者是如何参与其中的；并且帮助评论的消费者应该来自更多不同的背景。摘要背景 Cochrane 是最大的国际系统评价生产商，致力于让消费者参与其评价的制作和传播。审查旨在系统地确定消费者参与委托、开展或支持系统审查的组织的证据基础；重点是 Cochrane。方法 2015 年 6 月，我们搜索了六个数据库和其他来源，以研究消费者参与委托、承担或支持系统评价的组织，或个人系统评价过程。所有类型的报告和评估都符合条件。纳入的研究结合在由评估水平和参与类型构成的叙述性综合中。结果 我们确定了 36 项相关研究。其中 11 项是整个组织层面的评估；其中七个研究了 Cochrane 的消费者参与。十项研究检查了各个 Cochrane 评价小组。12 项研究报告了个人评价；其中只有两个是 Cochrane 评价。最后，三项研究本身就是其他研究的综合。纳入的研究报告了与审查设计和实施相关的广泛活动中不同程度的消费者参与。其中包括诸如优先级设置和结果定义等活动，以及特定于审查的角色，例如充当同行裁判和制作通俗易懂的语言摘要。关注个体 Cochrane 评价小组的研究的满意度和影响意识水平普遍高于组织范围的研究。结论 有证据表明 Cochrane 内外消费者参与的水平和类型高度不同，但对于使消费者参与评论制作的最有效方法和水平的证据有限。如果在个人审查和审查小组层面发现了影响证据，则强调需要适当的资源和支持流程，以便从愿意参与的消费者的生活体验中获得最大利益。如果评论确实涉及消费者，则可以更清楚地确定他们对最终结果的贡献。需要更严格的评估来确定实现这一目标的最佳方法。试用注册 不适用。如果在个人审查和审查小组层面发现了影响证据，则强调需要适当的资源和支持流程，以便从愿意参与的消费者的生活体验中获得最大利益。如果评论确实涉及消费者，则可以更清楚地确定他们对最终结果的贡献。需要更严格的评估来确定实现这一目标的最佳方法。试用注册 不适用。如果在个人审查和审查小组层面发现了影响证据，则强调需要适当的资源和支持流程，以便从愿意参与的消费者的生活体验中获得最大利益。如果评论确实涉及消费者，则可以更清楚地确定他们对最终结果的贡献。需要更严格的评估来确定实现这一目标的最佳方法。试用注册 不适用。