Disease activists come in all shapes, sizes… and temperaments. There are genial fund-raising walkers, chained-to-the-courthouse protestors and every passion in between. The Spring 2012 edition (.pdf) of the Stanford Cancer Institute News features an interview with two activists: breast cancer survivors whose brand of advocacy is helping shape the search for a cure.
Susie Brain and Joan Venticinque are trained research advocates who partner with - and occasionally prod - the scientists and physicians developing new breast cancer treatments. Among the thoughts they shared during our Q&A:
Q: In what ways can advocates influence research?
Susie: Simply stated, we help provide a “face” to the disease and remind researchers of the human element. We provide input and strengthen research projects, assist in clinical trial design - including development of patient materials - and we facilitate community outreach and education.
Joan: As patient advocates we bring a sense of urgency and context to the work of the researchers. We are the voice of the patient in studies and in clinical trial design. We have firsthand experience living with cancer and its treatments, so we are able to offer them perspectives they may not otherwise hear.
My surgical scars remind me everyday why I am an advocate and why working in research is important.
Previously: Surviving is just half the battle: More on Stanford’s new survivorship clinic and Wellness after cancer: Stanford opens clinic to address survivors’ needs
Photo by Steve Gladfelter