[VIDEO] Advocacy at ASCO: Furthering Education
Hear My Voice volunteer Christine Hodgdon was diagnosed with de novo metastatic breast cancer in 2015. She went to the 2019 ASCO Annual Meeting, and vlogged and blogged about her experience for LBBC.
Both science and advocacy have always intertwined in my career. Before my diagnosis, I earned a Master of Science degree in conservation biology and devoted my professional career to advocating for the environment. I have since left my profession to become a full-time patient advocate in varying capacities: as a mentor to other advocates, as a support person to those recently diagnosed with metastatic breast cancer or experiencing progression of their disease, and as a patient representative on research grant panels and at medical conferences.
My science background has helped guide my research of the most promising clinical trials and drugs currently in the pipeline for breast cancer. I was also inspired to launch my own website, TheStormRiders.org. The mission of the Storm Riders Network is to 1) provide the most up-to-date scientifically accurate information about breast cancer and its treatments, and 2) to distill this information into a digestible format that is easy to understand.
Medical conferences are incredible learning opportunities for patient advocates because they report on the most cutting-edge research. An advocate can learn about research that may change the standard of care, or a breakthrough drug showing clinical activity in their breast cancer subtype, or a complementary therapy that can effectively reduce side effects. All of these can drastically change a patient's life, and it's exciting to be in the room learning about these advancements with others in the medical community who are all working towards the same goal.
Conferences are also a wonderful opportunity to network with other patient advocates, and with researchers, oncologists, and others who share a passion to end cancer. The networking can stimulate creative conversations about initiatives or projects to enhance the patient advocacy experience.
Medical conferences typically gear toward those in the healthcare community. Cancer conferences are well attended by researchers, oncologists, surgeons, radiation oncologists, and other clinicians. In recent years, however, the medical community has recognized the value of patient engagement. Advocacy programs have been developed at some of the larger national conferences to give patient advocates an opportunity to interact with researchers and clinicians. Some examples are the Scientist↔Survivor Program from the American Association for Cancer Research® or the San Antonio Breast Cancer Symposium's Alamo Breast Cancer Foundation Patient Advocate Program.
Because medical conferences are intended for medical experts, they can be highly technical and quite overwhelming for the general public. The poster sessions, however, are different – much more relaxed and informal. The author stands at their poster for a designated time (often 2 to 3 hours) and allows participants in the meeting to come up and ask questions. It's a wonderful opportunity for patient advocates to learn more about cutting-edge and novel research from early career researchers.
Watch to hear Christine talk about her experience at the 2019 ASCO Annual Meeting poster session and her plans for an upcoming advocacy project.
The details of the poster session walkthrough program mentioned in the video are still being worked out, but it will pilot at the 2019 San Antonio Breast Cancer Symposium in December. It is unclear, at the moment, if it will be a component of the Alamo Breast Cancer Foundation Patient Advocate Program, or if it will be its own independent education session.
Either way, the poster walkthrough will be conducted in small groups of 4 to 5 people, which will include a science expert, a patient advocate mentor, and 2 to 3 new patient advocates. Before the meeting we will assign posters to attend, and the groups will walk up to the posters and ask the authors to describe their research projects. The science expert clarifies the technical terms and break down the details of the science, so that the other advocates can understand the research more fully. The patient advocate mentor serves as a liaison between the expert and the advocates, clarifying further any aspects not well understood. The advocates learn about new research, and offer the patient perspective to give the experts an opportunity to hone their patient-oriented communication.
My goal as an advocate is to represent the collective voice of young MBC survivors. As a patient who falls into both the young and metastatic groups, I feel uniquely qualified to bridge the gap between doctors and patients. But opportunities to interact with the medical community are limited and can be intimidating for patients. I have begun to seek out ways to increase opportunities for interactions between scientists and patients because I believe both parties have a lot to learn from each other, and they both have the same goals: to discover cancer treatments that improve quality of life and survival for cancer patients.
Christine Hodgdon, 39, is a Hear My Voice volunteer from Baltimore, Maryland. Follow us on Twitter to watch for updates about Christine’s program. Read Living Beyond Breast Cancer’s coverage of the 2019 ASCO Annual Meeting.