A systematic approach to involving consumers in the review process

Article type
Authors
Herxheimer A, Gyte G
Abstract
Objective: To discuss ways in which CRGs can systematically engage the help of consumers at all stages of producing a review, and to design a pilot project for the purpose.

Description: Up to now, in general, consumers seem to have been relatively little involved in the processes of producing Cochrane reviews. CRGs differ greatly in the extent to which they obtain and make use of input from consumers at various stages. Often such input is not, or only remotely, related to the consumers' own experience of the illness and of the interventions that are being reviewed. The result is that many reviews are based predominantly on the scientific and clinical interests and priorities of the reviewers and editors. Reviews should, however, always deal with the whole range of outcomes that are important to consumers, and consider them in the scientific and practical context. This can make reviews much more relevant and useful.
The Collaboration's constitution reflects this need, and the Consumer Network attempts to meet it. A major reason for the lack of progress may be that CRG Co-ordinators and Co-ordinating Editors lack the time or resources for organising and administering consumer input to the work of their Group. The workshop will explore how CRGs and consumers could approach this problem, starting with two ideas:

1. consumers can contribute most if they have (had) personal experience of the health problem and its management, either as a patient or a carer;
2. consumer input is needed at all stages, from the submission of the review title.
The first requires ways for identifying and enlisting such review-specific consumers (for example like that used by DIPEx, see www.dipex.org),
the second requires practicable and administrative processes for organising and integrating consumers' contributions into the CRG's work.

Target audience: Review Group Co-ordinators, Co-ordinating Editors, consumers and patient advocates.

Style: Discussion workshop