Consumer participation in The Cochrane Collaboration - comparison of two models

Article type
Authors
Gyte G1, Horey D2
1Consumer Editor, Pregnancy & Childbirth Group, UK
2Editor, Consumers and Communication Group, Australia
Abstract
Background: Consumers have been integral to The Cochrane Collaboration since its inception in 1993, making the organisation a leader in consumer involvement across the world. However, we still do not know how to assess the contribution of consumers, or know how to get their input in the most feasible and acceptable way. It is likely that different models will work better for different entities. With the Collaboration looking to review its standards, it is important to ensure that involving consumers is done effectively so that consumer input is not just a token gesture. One Cochrane Review Group operated a complex model of consumer participation for ten years (from 1998 to 2007), overseen by a Consumer Panel Coordinator (a funded part-time post) and aided by two volunteer co-ordinators in USA and Australia. This model was evaluated in 2003 using interviews with editors, consumers and review authors. When funding to the Review Group was reduced in 2007, the Consumer Panel model ceased, and the Group embarked on an alternative model of involving consumers using staff at the editorial base (2008 to present).

Objectives: To look at the advantages and disadvantages of the two models of consumer involvement used by the Cochrane Review Group between 1998 and 2011.

Methods: Interviews will be conducted with editors and consumers with experience of both models of consumer input. Findings will be compared with those from the earlier evaluation.

Conclusions: The lessons learned from both models of consumer participation will be presented. Ideas for other consumer involvement models and possible outcome measures will be proposed which may help the Collaboration continue to lead the world in involving consumers in health research.