Consumer involvement: All talk and no action?

Article type
Authors
Flodgren G1, Bidonde J1
1Norwegian Institute of Public Health
Abstract
Background:According to the Methodological Expectation for Cochrane Intervention Reviews (MECIR) standards, it is mandatory to involve consumers at every stage of the review. Consumers are the recipients of care; patients or clients. Consumers may play different roles at different stages of the review process (Fig.1).

Objectives:To assess to what extent consumers are involved in the development of Cochrane and Campbell protocols and reviews, and if so, how this involvement is reported.

Methods: In February 2017 we searched the Cochrane and the Campbell libraries for intervention protocols and reviews published in the last 12 months. We scrutinised the protocols and reviews for any mention of consumers, and noted if and how their involvement was described. In addition, we searched all review groups’ websites for mention of consumer involvement.

Results: We identified 41 Cochrane protocols and 27 reviews. Only 4 of the protocols (9.8%) and 4 of the reviews (14.8%) reported consumer involvement. We identified 23 Campbell protocols and 9 reviews (5 groups), none of which described consumer involvement. Five of 53 Cochrane review groups did not mention consumers on their websites, and another 10 provided little information. Only 1 of 6 Campbell co-ordinating groups mentioned consumers.

Conclusions:Our findings suggest that despite the MECIR guidance very few review groups engage consumers. Better guidance is needed on how to engage consumers and report their contribution, for instance in the MECIR standards. For improved transparency, authors should state whether they aim to seek the input of consumers in the protocol, and, in the full review, whether they did. A better description of the type of contribution by consumers in the acknowledgement would also be helpful. One Cochrane group has developed a standardised way to describe consumer involvement in their reviews, which other groups would benefit from using.