DIA 2019 Global Annual Meeting

Component Type: Forum
Level: Basic
CE: ACPE 1.50 Knowledge UAN: 0286-0000-19-730-L04-P; CME 1.50; IACET 1.50; RN 1.50

Join us for the DIA 2019 Global Annual Meeting Keynote Address and Opening DIAmond Session!
Keynote speaker Dr. Gibbons oversees the third largest institute at the NIH, with an annual budget of approximately $3 billion and a staff of nearly 2,100 federal employees, contractors, and volunteers. NHLBI provides global leadership for research, training, and education programs to promote the prevention and treatment of heart, lung, and blood diseases and enhance the health of all individuals so they can live longer and more fulfilling lives.

Advancing Discovery Science for Public Health Impact
Dr. Gibbons will address the value of implementation science that turns discovery science into improved population health, as well as the innovation of evidence-based initiatives in the treatment of chronic disease, to balance the scales of health equity in all populations.


DIAmond Session: Who Owns My Health Data: Patients, Data, and the Future of R&D
Data is the fuel for modern medical research. From enabling precision medicine to innovative uses of real world data, regulators, researchers, and the bio-pharmaceutical industry are increasingly dependent upon access to data sets of increasing size and scope. Consumers today are increasingly sensitive to how their data is used and monetized, largely in the wake of Facebook/Cambridge Analytica and other high profile scandals. Use of personal health data is not immune from these concerns, from GDPR and California Consumer Privacy Act to the rise of state bills challenging ownership over personal health data even if de-identified.


These consumer and policy trends are raising new questions and challenging norms -- Who should be the legal owner of personal health data? Should patients be notified when their data is monetized even if it lacks identifying information? If personal health data is being sold, should patients be able to participate in the monetization or would this practice exploit underserved populations? What are the potential implications of this shifting landscape on medical research and public health?


Learning Objectives

Review the evolving relationship of patients and health data, from access and sharing to privacy and ownership; Discuss the consumer and policy trends that may reshape expectations when personal health data is monetized; Discuss the data dependence of drug development today and the implications for medical research tomorrow.

Chair

Barbara Lopez Kunz, MSc

Speaker

Honorary Chair Welcome
Guido Rasi, MD

Honorary Chair Welcome
Joanne Waldstreicher, MD

Keynote Address
Gary Gibbons, MD

DIAmond Session: Who Owns My Health Data - Patients, Data, and the Future of R&D
Craig Lipset, MPH

Panelist
Harlan M. Krumholz, MD

Panelist
Doug Peddicord, PhD

Panelist
Deven McGraw, JD, LLM, MPH

Panelist
Donna R. Cryer, JD