Elaine Howley's piece ["How Can Patient Advocates Help Breast Cancer Researchers?", Aug. 22] in the Health Section on how breast cancer advocates collaborate with researchers describes well one important, but limited, role for advocates. The reality is that trained and educated advocates bring much more substance to research and the scientific process than Howley describes.
In 1995, breast cancer activists began to educate themselves in basic science and research language and methods to do far more than "provide input about the patient experience." The National Breast Cancer Coalition's Project LEAD course has since educated several thousand advocates across the breast cancer landscape. This education is not about patient experiences. It includes molecular biology, genetics, genomics, critical analysis and epidemiology research methods. These advocates have then gone on to meaningfully analyze the reasons behind the incremental pace of research and help implement solutions; participate in designing protocols and monitor clinical trials; sit on national policy panels; review innovative grant proposals at both the peer and programmatic level; and help formulate and implement research proposals from basic to translational science. They often ask the probing questions that no one else will ask.
They have also taken brave, high-stakes positions in support of scientific evidence. Facing down other advocates and the pharma industry, LEAD trained advocates testified to the Food and Drug Administration that the evidence behind the drug Bevacizumab failed to show a survival benefit, yet caused harsh side effects and should not be approved. In a hostile political climate, advocates supported the much maligned evidence-based U.S. Preventive Services Task Force mammography guidelines. Creating an innovative research model, advocates shone a spotlight on the two areas that might actually end this terrible disease – primary prevention and stopping lethal metastasis. They set a deadline to re-infuse a sense of urgency for this mission. And they remind everyone what that mission is – every day.
Yes, advocates must share their treatment experiences with researchers and make clinical trials more humane and effective. But they can – and must – do so much more than that.
Annette Bar-Cohen, M.A., MPH
Former Executive Director
Center for Advocacy Training 
National Breast Cancer Coalition