I have been a member of the Cochrane Consumer Network for many years. Over this time I have responded to many requests to comment as a patient user or “consumer” who has a number of medical conditions, including breast cancer. This work has entailed involvement with several different Cochrane review groups and my experience of these has differed.
As a rule I’m first asked if I’m interested in commenting on a given protocol or systematic review, or both. When I agree I am sent the paper and a checklist to fill in which provides an option to write “additional” comments. I always get an email back from them with kind thanks for the work I have done. But I don’t get specific feedback as to whether what I have done has been useful or not and how it will be incorporated, or not, in the review. On occasions when I have written specific additional comments, which raise new issues or new points, which either the authors or editors of the review want to follow up on, I have been notified of changes or updates to the review and asked to approve the changes. And that is it.
But the experience does vary. One review group I have worked with has adopted a completely different working style and approach. From the beginning I was considered and documented as a consumer author of the review and been involved with it from the start. For example, I was asked to give my ideas on topics I’m interested in, explain what my priorities are, and make proposals on what the review should cover. I participated in discussions about the issues that should be dealt with and the appropriate title for the review. At the end of the process I have been sent a full summary of the review, including results and conclusions. My involvement has been meaningful and I have appreciated the opportunity to do more than fill in a checklist of boxes with short answers. It’s enabled me to express an opinion at each stage of the process and I have found people keen to learn from my personal experience, common sense and knowledge as a patient
I am not arguing that one way is better or more efficient than the other, but given the choice I much prefer the second approach. Either way what motivates me as a consumer is to help in the process of generating better evidence to help improve healthcare and I can and am happy to adapt my work and myself to either approach.
Competing interests: None declared.