Karen Morley blogs and draws her experiences as a daunted and delighted volunteer peer Somebody responsible for preparing and, in the case of Cochrane Reviews, keeping up-to-date a systematic review. The term ‘reviewer’ is also sometimes used to refer to an external peer reviewer, or referee. More for Cochrane Common Mental Disorders.
Would I, as a new ‘Consumer’ is Cochrane’s preferred term for patients (or someone with personal experience of a health condition), care-givers or family members of someone with a health condition. (https://consumers.cochrane.org) More volunteer for Cochrane Common Mental Disorders, have jumped in at the deep end and attempted a A process for checking the quality and importance of reports of research. An article submitted for publication in a peer-reviewed journal is reviewed by other experts in the area, such as patients, health professionals or other researchers. More if I hadn’t been asked? I don’t think so. But now I’m here, unsteadily dogpaddling, with two protocols and a systematic review under my belt, I thought I’d share some reflections and questions with you.
First, the Fear
First came the Fear. I felt quite tiny in the huge, complex Cochrane organisation. And ‘peer reviewing’ sounded so imposing. I know there are consumers who are themselves researchers or health professionals, but how could I be considered a ‘peer’?
Jess Hendon, the Managing Editor, was warm, kind and welcoming and assured me my lived experience was what counted. But did I have the knowledge, understanding and skills for the task? I had some experience of close reading and critical evaluation from my years as a secondary English teacher, and a basic understanding of In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. More from contributing to some Cochrane consumer learning resources that are currently in development, but would that be enough? I was afraid of being judged and afraid what I had to say might not be useful. Well, it was too late for dithering; a deadline was approaching: I took the plunge.
There was a checklist that gave some focus and structure. There was also some linked online support for peer reviewers. At the moment this is quite brief and packed with detail and assumes some prior knowledge in the reader (for instance, ‘interventions’, ‘outcomes’, ‘comparator’ and ‘settings’ have specialist meanings that might be unfamiliar to a complete newcomer) and the language is rather formal. I was lucky to have already explored the subject a little and I wondered what it must feel like to be starting from scratch.
Despite the checklist I was still full of doubt. What exactly was expected of me? How should I express myself and in how much detail? A worked example would have been helpful. When I later saw the feedback from the authors on all the reviewers’ comments I had a much clearer idea of the process and the kind of contributions that were acceptable. I felt strangely detached and lonely as I looked at my screen. It would have been nice to have the luxury of a mentor, or some buddies to bounce ideas off, or maybe to have had a group practice run. It would also be interesting to hear an author’s view. (I’ve since had the pleasure of meeting Lindsay Robertson, which I found reassuring – thanks, Lindsay!) Last year I took part in a James Lind Alliance Priority Setting Partnership and I found it was illuminating to hear the comments of other patients, carers and clinicians: we have lots to learn from each other.
The The plan or set of steps to be followed in a study. A protocol for a systematic review should describe the rationale for the review, the objectives, and the methods that will be used to locate, select, and critically appraise studies, and to collect and analyse data from the included studies. The protocols for Cochrane Reviews are available in the Cochrane Library. More I looked at first would certainly be challenging for a consumer to read. I had to check my own understanding of ‘monoamine neurotransmission’, for instance. (That was quite a ride!)
I’d be interested to know whether, when consumer reviewers write about language and style, the same issues crop up frequently, and whether it might be desirable or feasible to collect them or to have some sort of glossary. Making suggestions for explanations or alternative expressions throws up a host of knotty problems. Who is the reader I’m writing for? What level am I pitching at? Which consumers read protocols – and systematic reviews – and why? How much can something be simplified without losing important nuances or even completely misrepresenting its meaning? Is there in fact a conflict between several different audiences and purposes? Which ones do the authors have at the forefront of their minds? Why doesn’t a protocol have some kind of Plain Language Summary?
Responsibility and representation
I suppose I felt the most confident about working on the language and less so about commenting on things like objectives and the criteria for considering studies. I knew there would be other contributors but I had a strong sense of responsibility: a real desire to write something that would actually be helpful to the authors. I have enormous respect for them and the huge, intricate, demanding task they have carried out. I don’t want to waste their time.
But now to the heart of the matter: representation. ‘Does the background address the hopes and concerns of people considering the Something done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. More?’ asks one of the prompts. My task is to put myself into the shoes of the most important end users of systematic reviews and protocols: the consumers. This is the biggest responsibility of all. I can do my best but I’m aware that, alone, I’m not up to the task. I am one old, white, middle class woman, with one experience of one manifestation of a wide-ranging mental health condition: one tiny part of a huge jigsaw. Cochrane needs many consumer peer reviewers to represent us in all our diversity. And not just reviewers. I appreciate my opportunity to make changes to the review before it’s published, but this is the end of a very long journey. Have other consumers been involved before I see the review – in setting priorities or determining the research question or Outcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’. More, say? How would I know? Shouldn’t it be mentioned in the review somewhere?
You are needed!
So, consumers, you are needed! If you feel the stirrings of an inclination to get involved, please have a go at something – anything. You might feel reticent, but come and help lead the way until it becomes commonplace for us to be included and to shape research around all our hopes and concerns.
I am sometimes shocked when I think how comparatively young the modern evidence based medicine movement is. Similarly, it’s easy to forget that the meaningful inclusion of consumers is really only beginning. I am delighted that Cochrane’s revised 2018 Peer Review Policy means Cochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. More Groups must now aim to have at least one consumer peer reviewer for each Cochrane Review. (If there were more of us, fellow consumers, it could be more than an aim!) I’m delighted and daunted in equal measure to be one of those peer reviewers, and enthusiastic about CCMD’s plans to take this forward. It has been a tremendous pleasure to meet Rachel Churchill, Jess Hendon, Lindsay Robertson and Noortje Uphoff (well, I popped into her office!). The reception they have given me has been affirming and encouraging. I feel the burden, but I can see a great opportunity.
So what’s next?
I know I ask a lot of questions. I’ve only just started.
Join in the conversation on Twitter with @KMorley9 @Cochrane_CCMD @CochraneUK or leave a comment on the blog. You might also like to look at getting involved in Cochrane through Cochrane Consumers and Cochrane Crowd.
Karen’s blog and cartoons first appeared on Cochrane Common Mental Disorders website where you can also find out more about their work.