SYMPOSIUM: INCORPORATING PATIENT ENGAGEMENT AND PATIENT-PREFERENCE DATA INTO MEDICAL DECISION MAKING
Monday, October 24, 2016: 11:15 AM - 12:30 PM
Bayshore Ballroom Salon E, Lobby Level (Westin Bayshore Vancouver)
Uncertainty is ever present in medical decision making. While there have been great efforts to reduce uncertainty surrounding the benefits and risks of new medical interventions, these efforts need to be guided by a greater understanding of the end consumer – the patient. In recent years there has been a growing movement to engage patients and to inform decisions by the more formal study of patient preferences throughout the healthcare system. Without a clearer understanding of patient preferences, not only is it possible to valuing innovation incorrectly, but we may be studying the wrong topics and developing intervention that have little value in the eyes of the end user. This session will highlight recent efforts to engage patients in research and to better understand their preferences to promote more patient-centered decision making in medicine. There will be four speakers sharing difference experiences on patient engagement and measuring patient preferences: Andrea Stern Ferris will describe LUNGevity’s efforts to engage lung cancer survivors in patient-centered research; Deborah Marshall will describe the Patient and Community Engagement Research (PaCER) Program at the University of Calgary, Annie Saha will provide an update on the FDA strategic efforts to engage patients and incorporate patient preference in regulatory decisions, John Bridges will describe a PCORI methods study to advance and apply stated-preference methods in comparative effectiveness research.
Panelists:
Deborah Marshall, PhD
University of Calgary
Professor
Community Health Sciences
Deborah Marshall is a Canada Research Chair, Health Services and Systems Research and the Arthur J.E. Child Chair and professor of Rheumatology Outcomes Research at the University of Calgary. Deborah’s research program focuses on patient preferences and patient engagement research, cost-effectiveness analysis, and dynamic simulation modeling of health services delivery to improve the effectiveness and efficiency of health care services. She is a founding investigator of the innovative Patient and Community Engagement Research (PaCER) Program at the University of Calgary which trains patients to design and conduct health research.
Anindita Saha, B.S.
U.S. Food and Drug Administration (FDA)
Director, External Expertise and Partnerships
Anindita (Annie) Saha is the Director of External Expertise and Partnerships (EEP) in the FDA’s Center for Devices and Radiological Health (CDRH). EEP coordinates the Patient Preference Initiative to incorporate patient perspectives on benefits and risk in regulatory decision making. She is also a part of CDRH’s Strategic Priority to Partner with Patients to incorporate patient engagement and the science of patient input in device design, assessment, and review. EEP manages the Network of Experts Program, public-private partnerships including the Medical Device Innovation Consortium (MDIC), the Critical Path and Regulatory Science Initiatives, the Medical Device Fellowship Program, and technology transfer and collaboration efforts for the Center. Ms. Saha began her FDA career as a researcher in the CDRH’s Office of Science and Engineering Laboratories in the Division of Imaging and Applied Mathematics in the area of imaging display technologies before moving to EEP to coordinate Critical Path and Regulatory Science activities for the Center. Ms. Saha has a Bachelor of Science in Bioengineering and Minor in History from the University of Pittsburgh. She was a student researcher at the McGowan Institute for Regenerative Medicine working in tissue engineering and wound healing.
John F.P. Bridges, PhD
Johns Hopkins Bloomberg School of Public Health
Associate Professor
Health Policy and Management
John F P Bridges PhD is an international leader in the advancement and application of stated-preference methods in health and founding editor of The Patient – Patient Centered Outcomes Research. John has worked with numerous patient groups, health technology assessment agencies, regulators, and international aid agencies to utilize these methods to document the preferences of patients and other stakeholders. John is a frequent speaker on patient engagement, patient preferences and patient-centered benefit-risk analysis. John is an associate professor in the Department of Health Policy & Management at Johns Hopkins Bloomberg School of Public Health.
Andrea Ferris, MBA
LUNGevity Foundation
President and Chairman
Andrea became involved with lung cancer advocacy following her mother’s death from the disease in 2008. After receiving a diagnosis of stage IV lung cancer in 2006, Andrea’s mother underwent numerous treatments and clinical trials at several major academic institutions to no avail. Together with her father, Andrea was her mother’s primary caregiver during this time. Determined to drive more money into lung cancer research, Andrea left the successful software company that she helped launch, to found Protect Your Lungs, an organization focused 100% on funding early detection research. In 2010, Andrea merged Protect Your Lungs with LUNGevity, a Chicago based organization, to form the nation’s leading lung cancer focused non-profit.
Andrea’s strong business background combined with her connections to the worlds of research and advocacy have enabled her to build the preeminent patient advocacy organization in the lung cancer space. LUNGevity funds translational research into both early detection and more effective treatments of lung cancer as well as a highly coveted Career Development Awards program. LUNGevity also fills unmet needs for people diagnosed with lung cancer by providing education, support and survivorship programs. Recognizing the need to build awareness and understanding about lung cancer, LUNGevity has built the largest grassroots network of events and advocates across the country.
Chair:
Heather L. Benz, PhD
U.S. Food and Drug Administration (FDA)
Staff Fellow
Dr. Heather Benz is a Medical Device Fellow in the Center for Devices and Radiological Health (CDRH) at the U.S. Food and Drug Administration. Dr. Benz's research focuses on tools used in the translation of novel technologies following demonstrations of early feasibility. These include the quantitative assessment of patient perspectives on the benefits and risks associated with novel medical devices and physiology-based methods to quantify device performance. She also contributes to the development of policy on the use of patient preferences in regulatory decision-making and coordinates the assessment of regulatory science impact. Dr. Benz received a Ph.D. in Biomedical Engineering from Johns Hopkins University School of Medicine and a B.S. in Biomedical Engineering from Case Western Reserve University.
