Sara Yaron: Meaningful involvement as a patient reviewer for Cochrane

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.

Sara Yaron is an elected member of the Cochrane Consumers Executive Committee and an honorary advisor in the Board of ISQua.

Competing interests: None declared.