Medical research empowers us to fight cancer, and advocacy empowers us to ensure that it addresses young women’s needs.
Advocates who want to make an impact in this crucial area should educate themselves. Many advocates have made their work much more powerful by enrolling in Project LEAD, The National Breast Cancer Coalition’s (NBCC) premier science training course for activists. NBCC's site contains information about breast cancer advocacy, NBCC’s legislative priorities and training opportunities to make yourself a better, stronger advocate.
To learn more about what makes the best research evidence, how systematic reviews reveal it and how to evaluate scientific evidence, you can take free online courses here.
You can also begin your advocacy efforts by exploring Research Advocacy Network’s Advocate Institute. You’ll find lectures and self-paced learning activities. Or check your local cancer center’s calendar for events relevant to the issues you care about.
Other educational opportunities include the American Association for Cancer Research (AACR) Survivor Scientist Program as well as attending scientific conferences such as American Society of Clinical Oncology’s Annual Meeting, ASCO Breast Cancer Symposium, or the San Antonio Breast Cancer Symposium. These conferences may offer scholarships to qualified advocate applicants. Prior training, such as Project LEAD, is typically required.
Join the Team
After educating yourself, you can earn a place as a powerful advocate — a member of the team that decides what research should be done, what research gets funded and how trials get designed.
As an educated consumer advocate, you can play a vital role in cancer research. While researchers believe in their work, survivors have been instrumental in shaping their studies. We need to help define which questions researchers need to address in order to improve the standard of care and quality of life issues most important to us.
Educated activists can read a research proposal and ask important questions like, “If we know the answer to this question, will it have meaningful impact?” “Would the answer to this question lead to a significant improvement in outcomes for many patients?” If the answer to these questions and others is “no,” then the research probably doesn’t need to be done. Educated activists provide a necessary perspective, making sure researchers think about how their work helps us.
You can also add your voice to the research world by volunteering on peer review boards for research programs. You can read research proposals and have a voice in deciding which studies get precious research dollars. Find opportunities through the Department of Defense Breast Cancer Research Program, the California Breast Cancer Research Program, Komen's "Advocates in Science" program and the Patient-Centered Outcomes Research Institute. Details on applying to these grant review programs can be found on their websites. Together we can help focus researchers on efforts to end breast cancer and improve the lives of young women like us. If you would like a letter of recommendation to serve in one of these capacities, please email Michelle Esser. YSC requires that advocates applying to review grants for the DOD or CBCRP have Project LEAD training or similar experience.
YSC's Research Agenda
In 2012-2013, YSC revisited its research agenda by holding a Research Think Tank (RTT). This almost 2-year long process brought together advocates, researchers, and physicians to determine the most pressing research questions in need of answers to improve the quality and quantity of life for young women affected by breast cancer. The resulting Young Survival Coalition has created a research agenda to give shape to our collective voice. It guides our efforts to solve many of the unknown questions about early onset breast cancerlists YSC’s top research priorities. We strongly believe that if researchers ask these questions, better lives and more effective care await young women affected by breast cancer.