By Beverly Canin
Many advocates know I was a speaker at the 2012 ASCO Annual Meeting in June in Chicago. I presented an advocate perspective in an Educational Session, “Designing Clinical Trials for the Elderly.” I felt not only that it was important to put a face on the subject, literally and figuratively, but also to explore what we mean by advocate and why we should have an advocate perspective.
After emphasizing the functional and cognitive diversity of the population we refer to as elderly, I addressed the prevalence of skepticism and suspicion about clinical trials among older adults and suggested that working with advocates and advocate organizations could help researchers overcome the skepticism. I described several advocate organizations and training programs, including NBCC and Project LEAD®.
How this came about is a great example of our continuing education as advocates opening doors we might not have imagined. At the 2011 ASCO Annual Meeting, which I attended under a scholarship from the ASCO Patient Advocate Program, I was drawn to a session on the Interface of Aging and Cancer because I hadn’t been aware of a focus on geriatrics and oncology despite the fact that age is the greatest risk factor for breast cancer after gender.
After speaking to the presenters and indicating an interest in their research, I followed up several weeks later with an e-mail including my experience as an advocate. As a result, I was invited at first to listen in on bi-weekly, hour-long conference call meetings of the Cancer and Aging Research Group (CARG). It quickly became evident that the patient advocate insight gave critical added value to the group and I was asked to become a formal member.
CARG’s mission is to join geriatric oncology researchers across the nation in a collaborative effort of designing and implementing clinical trials to improve the care of older adults with cancer. The group has been led by Arti Hurria, M.D. of the City of Hope Comprehensive Cancer Center. She and Hyman B. Muss, M.D. of the University of North Carolina, Chapel Hill, designed and facilitated the ASCO session.
By including the advocate perspective among the presentations, they confirmed the concept of advocates as equal collaborators in the research process. I hope my experience serves as an encouragement to other advocates as well as to researchers to expand the opportunities for advocate participation on panels at major scientific meetings as well as other venues.