"Consumers - an ever more significant resource for The Cochrane Collaboration"
Silvana Simi is a long-time and active Cochrane contributor, in addition to her work for the National Research Council in her native Italy. Here she discusses what brought her into The Cochrane Collaboration initially, and the importance of making healthcare information widely available.
Cross-posted from the Cochrane Consumer Blog as part of the Consumer Network’s focus on Wise Consumer Month.
Why did you join CCNet?
I have been involved in The Cochrane Collaboration (CC) since 1999, when my eldest daughter was diagnosed with multiple sclerosis (MS). I joined the MS group, and from the beginning I have taken an active role, both as Editor and consumer representative.
Anyway, I have felt myself essentially a consumer, so, since then, I also joined the Consumer Network (CCNet), working as a member of its Governing Committee since the network revamping in 2002, and currently as a member of the CCNet Executive.
While, at the beginning, to work for the CC was simply a way to fight my private war against MS, being in CCNet made me more and more aware about the centrality of patients/citizens/consumers in all the steps of healthcare. So, my two guide concepts have been evidence-based medicine (EBM), which emphasises the importance of basing care on valid evidence rather than consolidated opinions, and, mostly, patient-centred medicine (PCM), because it focuses on patients’ views and values and highlights the potential for patients to become lead actors in health, rather than passive recipients of authoritarian advices. During these years, I have run workshops, given talks to congresses, master’s, and continuing medical education courses to stress the pivotal role of patients both in healthcare and in research.
Cochrane consumers are a fantastic, multifaceted but like-minded community of good will persons wishing and acting to make patients to become able to speak up for themselves. Consumers/patients are important entities for the CC, both as reviewers of systematic reviews and as champions of disseminating to other lay people the results of the reviews, and I have personally experienced their increasing importance mostly in the last years.
I consider Plain Language Summaries (PLS) of the reviews the Cochrane product that fit best for consumers/patients/citizens information and "formation", offering good, evidence-based information and Cochrane consumers can help a lot to make PLS more and more available and understandable to the average member of the public.
For these reasons I have been committed to act as consumer referee for systematic reviews and to write or comment on PLS for my group (besides being co-author of two reviews), and also for several other CRGs. Furthermore, living in a non-English-speaking country, I am very aware of the difficulties non-English people have to face, so I am working to translate into Italian the PLS and other documents, so contributing to make them available to a greater number of persons.
At the moment, to improve the quality and consistency of PLS is one crucial engagement of the CC, being that the PLS is the most read section of a review, not only by consumers, who have been the "natural" target since the beginning, but also by professionals, policy-makers, and journalists. So PLS is assumed as a stand-alone document, and consumers can help a lot to make it clear, complete, transparent, really in plain language, and available and acceptable in all the different social/cultural settings.
The challenge is, therefore, to foster a greater collaboration between CRGs and consumers and to provide effective methods of communication between consumers and the whole CC. Consumers will be up to the task, and will go on being an ever more significant resource for the whole Collaboration.
Pisa 15 January 2012