Event Description
In an age when consumers and their preferences have a strong impact on just about every area of their lives, health care may be the last bastion of traditional hierarchy. For more than two decades, Sharon Terry has pioneered a new model to accelerate medical research on a disease that affects her two children. Terry, a non-scientist, created DIY solutions in biomedical research and translational science, and then scaled them so that other consumers, advocates, activists, and citizen scientists could also use these tools to craft novel research projects in hopes of alleviating the suffering of many. Terry and Yee discussed the scientific, clinical, ethical, and policy issues related to consumer-driven science.
Commentator
Douglas Yee, MD
Director, Masonic Cancer Center
John H. Kersey Chair in Cancer Research
Professor of Medicine and Pharmacology
University of Minnesota
Moderator
Susan M. Wolf, JD
Chair, Consortium on Law and Values in Health, Environment & the Life Sciences
McKnight Presidential Professor of Law, Medicine & Public Policy
Faegre Baker Daniels Professor of Law
Professor of Medicine
University of Minnesota
Resources
- Marshall E. Patient Advocate Named Co-Inventor on Patent for the PXE Disease Gene. Science 2004;305(5688):1226.
- Terry SF. The Study is Open: Participants are Now Recruiting Investigators. Science Translational Medicine 2018;9(371):eaaf1001.
- Terry SF, Terry PF, Rauen KA et al. Advocacy Groups as Research Organizations: The PXE International Example. Nature Reviews Genetics 2007;8;157-164.
Continuing Education Information
To earn Continuing Education credits, webcast viewers must email us at [email protected] during the webcast to confirm their wish to receive CE credits. Later viewing of this video will not qualify for credit.
Attorneys: The Minnesota State Board of Continuing Legal Education approved 1.5 Continuing Legal Education (CLE) credits; Event Code is 265320.
Accreditation Statement: In support of improving patient care, University of Minnesota, Interprofessional Continuing Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.
American Medical Association (AMA): The University of Minnesota, Interprofessional Continuing Education designates this live activity for a maximum of 1.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Other Healthcare Professionals: Other healthcare professionals who participate in this CE activity may submit their statement of participation to their appropriate accrediting organizations or state boards for consideration of credit. The participant is responsible for determining whether this activity meets the requirements for acceptable continuing education.