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

Abstract

Plain English summaryPlain English summaryCochrane 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 th...

Research co-design in health: a rapid overview of reviews

“…In parallel with the establishment of patient-centred research organisations, researchers have themselves examined different methods of health stakeholder engagement (e.g. [8][9][10]). Methods for stakeholder engagement and collaborative data collection have been developed and applied across a range of populations, including the elderly and intellectually disabled (e.g.…”

Patient, Family, and Community Advisory Councils in Health Care and Research: a Systematic Review

“…This warrants further exploration as leaders in this methodology such as the Cochrane Collaboration have considered patient involvement as an integral organizational attribute since inception 35 and yet there are few examples of active patient involvement in the review process. 71 An ongoing systematic review is aiming to further characterize optimal strategies for involving the public and other stakeholders in the conduct of systematic reviews. 30 Our systematic review has several limitations.…”

Systematic reviews: A brief historical overview

“…For example, studies have been conducted on the effectiveness of dissemination strategies to facilitate the uptake of systematic reviews (Tricco et al, 2015). Also, increasing involvement of stakeholders (e.g., consumers, clinicians, and policy-makers) in the production of systematic reviews has been advocated (Cottrell et al, 2014;Morley, Norman, Golder, & Griffith, 2016).…”