Consumer stories: Liz Whamond - Survivor, Investigator

I came to Cochrane in 1999 as a Canadian consumer.  While attending a breast cancer symposium in Brussels, Belgium early that same year, I learned of Cochrane and the consumer presence within Cochrane through Hilda Bastian.  My first Colloquium experience was in Rome.  Lots of consumers from around the world participated in the Colloquium.  It was an exciting experience to meet consumers who were like minded with respect to systematic reviews and evidence-based medicine.  I was independently funded to attend the Rome meeting.

I had my reasons.  In 1993 I was diagnosed with breast cancer.  Six weeks were spent in a hostel 60 miles from my hometown receiving radiation treatments.  I knew no one in the hostel and had lots of time on my hands as I didn’t go home between treatments.  I was interested in the latest breast cancer research and asked the hospital for permission to access the library to read breast cancer research papers.  I was told it was not open to the public.  Needless to say, I was very upset by this news.  I reasoned that tax payer dollars had been used to fund the library to acquire this information and yet I was denied access to the papers.  There became my quest for knowledge.

Eventually the library was opened and eventually my oncologist in my home town began supplying me with journal articles.   I was delighted to be able to do my own research.  I reasoned that since it was my disease, I should be up-to-date with the latest research findings.  It became a personal quest for knowledge.

So let me fast forward.  In 1999 when I had the opportunity to be involved as a consumer in Cochrane, I leapt at the opportunity.  I have been a consumer reviewer, co-authored a paper, been Chair of the Cochrane Consumer Network (CCNet) and sat on the Cochrane Collaboration Steering Committee.  It’s been an incredible experience.  I’ve been engaged with consumers from around the world as well as researchers and physicians.  It’s enriched my life in so many ways.

There have been many changes in that time.  We now have a paid Coordinator.  That was only a dream in 1999.  We have grown in huge numbers since the early days.  It is now considered mandatory for Review Groups to include consumer referees and this is closely monitored within Cochrane.

This has been an exciting period for me.  The development of CCNet into a viable, credible entity over the past 12 years of my involvement has been gratifying to follow.

Elizabeth (Liz) Whamond currently serves as Co- Chair of the Cochrane Consumer Network, a member of the Cochrane Collaboration Steering Group, Chair of the Canadian Cancer Action Network and a Board member of the Canadian Partnership Against Cancer. Actively engaged in the cancer community as a strong patient advocate since the early 1990's, Liz has held numerous volunteer leadership roles at thel local, provincial and national levels within Canada and internationally promoting evidence-based medicine through Cochrane and beyond.  From her voluntary role within the Canadian Cancer Action Network to her work with the Canadian Partnership Against Cancer and Cochrane Consumer Network she has remained a dedicated volunteer for almost 20 years. Liz firmly believes in the power of the voice of the consumer.

Posted as part of the Consumer Network’s focus on Wise Consumer Month.

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