Survivors' cancer experiences give them unique expertise that is crucial to strengthening research and improving patient-centered care. Survivors can improve patient-centered research by sharing their insights in a number of capacities, for example by reviewing research proposals, advocating for research funding and participating on the research team. Yet, understanding the research process and learning how to get involved can be daunting. Join us for a lively discussion with an exciting panel of survivor/research contributors to hear about their experiences getting involved in research, and learn how you can too!
- Learn the valuable role patients and advocates can play in influencing research from the initial development of the research question to translation into clinical practice
- Learn the importance of being an informed consumer of medical care and developing “critical health literacy”
- Discuss steps that cancer survivors can follow to identify research advocacy opportunities
- Describe the value of incorporating the patient voice into the research process
Note: Registration is mandatory for participation. The event will be capped at 15 to 20 participants.
- Debra L. Madden is a two-time cancer survivor who was diagnosed with Hodgkin’s lymphoma as a young adult and with breast cancer nearly 20 years later, which was thought to be secondary to the radiation she had received for her original cancer treatment. She is an active cancer research advocate who is a member of numerous cancer support and research organizations, including the ECOG/ACRIN (E/A) Cancer Research Group’s Cancer Research Advocate Committee, Breast Core, Cancer Care Delivery Research Committee, and the E/A Cardiotoxicity Working Group.
- Cindy Cisneros, MPA currently serves as Vice President of Education Programs for the Committee for Economic Development (CED), a nonprofit, nonpartisan, business-led, public policy organization that delivers well-researched analysis and reasoned solutions to our nation’s most critical issues. Ms. Cisneros has held previous roles as a Principal Research Analyst at the American Institutes for Research (AIR) and Director of Member Practice at Public Education Network (PEN). Ms. Cisneros, a cancer survivor advocate, has served as Advisory Board Chair of the GW Evaluating Cancer Survivorship Care Models study. She is a graduate of the University of California, Berkeley and holds a Master’s of Public Administration from the John F. Kennedy School of Government at Harvard University.
- Sara Chang serves as the Director of Policy and Advocacy at Research!America. In her role, Ms. Chang develops and executes policy and advocacy strategies to increase public and policymaker awareness of the health and economic benefits of medical research. Prior to joining Research!America, Ms. Chang was with the Lupus Foundation of America for 10 years, most recently as the Director for Advocacy and Government Relations. During her tenure at the Lupus Foundation of America, Ms. Chang advocated to secure funding for lupus research, education, and awareness. Additionally, she provided leadership on patient advocacy priorities for the Foundation. Prior to her work with the Lupus Foundation of America, Ms. Chang worked for Congressman Tom Osborne (NE-03). Ms. Chang has a B.S. in Political Science from the University of Nebraska at Kearney. She currently resides in Alexandria with her husband and two sons.