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00: Plenary [clear filter]
Monday, June 24
 

8:00am

#100: Opening Plenary, Keynote, and DIAmond Session
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



Speakers
avatar for Gary Gibbons

Gary Gibbons

Director, National Heart, Lung, and Blood Institute, NIH
Dr. Gibbons oversees the third largest institute at the NIH, with an annual budget of more than $3 billion and a staff of 917 federal employees.The NHLBI provides global leadership for research, training, and education programs to promote the prevention and treatment of heart, lung... Read More →
avatar for Barbara Lopez Kunz

Barbara Lopez Kunz

Global Chief Executive, DIA
Barbara Lopez Kunz, MS, is responsible for the leadership and oversight of DIA global operations, implementing strategies that focus on driving thought leadership and innovation in therapeutic development to improve the health of people worldwide. Ms. Lopez Kunz previously served... Read More →
avatar for Craig Lipset

Craig Lipset

Former Head of Clinical Innovation, Pfizer
Craig Lipset has led at the intersection of patient engagement, personal health data, and accelerating clinical research. He created and led Clinical Innovation at Pfizer, developing and scaling “first in industry” approaches to improving patient experience and innovative data... Read More →
avatar for Guido Rasi

Guido Rasi

Executive Director, European Medicines Agency (EMA)
Prof Guido Rasi began his second term as Executive Director of EMA on 16 November 2015. From November 2014 to mid-November 2015, he served as EMA’s Principal Adviser in Charge of Strategy. From November 2011 to November 2014 he was the Executive Director of the EMA and a member... Read More →
avatar for Joanne Waldstreicher

Joanne Waldstreicher

Chief Medical Officer, Johnson & Johnson
Joanne Waldstreicher, M.D., is Chief Medical Officer, Johnson & Johnson. In this role, she has oversight across pharmaceuticals, devices and consumer products for safety, epidemiology, clinical and regulatory operations transformation, collaborations on ethical science, and technology... Read More →
avatar for Donna R. Cryer

Donna R. Cryer

Interim Executive Director, People-Centered Research Foundation
Donna R. Cryer, JD, has channeled her personal experience as an IBD and liver transplant patient into professional advocacy as president and chief executive officer of the Global Liver Institute, the innovation and collaboration platform for the liver community. For almost a decade... Read More →
avatar for Harlan Krumholz

Harlan Krumholz

Harold H. Hines, Jr. Professor of Medicine and Director CORE, Yale University
Harlan Krumholz, the Harold H. Hines, Jr. Professor of Medicine at Yale School of Medicine, is a cardiologist and the Director of the Center for Outcomes Research and Evaluation at Yale-New Haven Hospital, where he leads initiatives to improve the quality and outcomes of clinical... Read More →
avatar for Deven McGraw

Deven McGraw

Chief Regulatory Officer, Ciitizen
Deven McGraw is the Chief Regulatory Officer for Ciitizen, a consumer health technology start-up. Prior to joining Ciitizen, she directed U.S. health privacy and security through her roles as Deputy Director, Health Information Privacy at the HHS Office for Civil Rights (the office... Read More →
avatar for Doug Peddicord

Doug Peddicord

Executive Director, Association of Clinical Research Organizations (ACRO)
Following a career as a clinical psychologist, Doug Peddicord came to Capitol Hill as an American Association for the Advancement of Science (AAAS) Congressional Fellow in 1994. With policy expertise in the conduct and regulatory oversight of clinical trials, Dr. Peddicord serves... Read More →


Monday June 24, 2019 8:00am - 10:00am
Ballroom 20 San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA
  • Credit Type ACPE, CME, IACET, RN
  • Tags Forum