I met The Cochrane Collaboration the first time, at an international conference regarding breast cancer, in the late 90’s in Europe. There, I read a brochure, published by CCNet, and fell in love with the idea. At that time, I was a very young woman diagnosed with breast cancer (grade 3) and a mother of three little children, with one very ill daughter, so I was “thirsty” for any certified, objective written medical information regarding my family’s diseases. I wrote a letter to Hilda Bastian, the then co-ordinator of CCNet, and became an active member of The Cochrane Collaboration’s consumers’ network.
As a lay person, in a paternalistic period within the medical “territory”, it was impossible to get any medical information based on evidence from an objective authority.
As my personal experience was with breast cancer, I’ll tell my story: I was diagnosed in 1983 with breast cancer. The one and only option that was given to me by the medical authorities in my country, was to have a Mastectomy! No other option was even mentioned! All my questions were responded to with contempt. For me it was a feeling of suffocation! I didn’t know where to go for information based on evidence, because all the second opinions in my country, said the same: Mastectomy (!), while in Europe and in the USA there were positive results of Lumpectomy.
When I finished my medical treatment, I joined the Israeli cancer association and the “Reach to recovery” as an advocate on a voluntary basis to help others. One of my main goals was to provide medical information. That work was outside The Cochrane Collaboration.
When I joined CCNet, a new world had been opened for me. I could find qualitative information based on evidence and I become much more confident when facing the medical staff about my, and my family’s, diseases. The involvement of patients\consumers as an integral part of the process “captured my heart”. I started to help CCNet with hand searching journals, for the Breast cancer group, and commenting on reviews and protocols.
I’m not sure that consumer activity was very democratic and transparent back then, but the opportunity existed to become an active consumer which provided a good feeling of becoming part of an important, unique and strong organisation.
Over time, consumers became much more involved in The Collaboration, and participated in committees as equal members. Transparency was felt more and more, and consumers’ comments were taken under consideration, with much more sense of equality and respect than before.
I started to write comments on reviews and protocols, mostly for the breast cancer group, as an experienced consumer but also for other groups. Plain language summaries became part of Cochrane reviews, which is very significant for consumers.
CCNet as an organization became bigger, much more democratic and most of the activity, I think, is transparent, with part of the discussions involving most of the members.
Sara Yaron has been an active consumer’s advocate since 1982, when she was first diagnosed with breast cancer. By profession, she’s a private lawyer in Israel, engaged in medical malpractice lawsuits. After her diagnosis, she became involved with national and international organizations, all regarding health care, patient safety, patients rights to get updated medical information based on evidence, and patients rights.
Posted as part of the Consumer Network’s focus on Wise Consumer Month.