Collecting and Leveraging Real-World Data [HRA Members Meeting, Chicago, Fall 2023]
The FDA defines real-world data (RWD) as that which relates to patient health status and/or the delivery of healthcare, often collected from a variety of sources, including the electronic health record (EHR), medical claims, disease registry data, direct input from patients, and digital health technologies. The use of this data and resulting evidence is vital to improving the efficiency of clinical research and bridging the gap between research and practice. This session will explore the usage of RWD for economics and health research, drug repurposing, and addressing unmet needs.
Elise Hoover, MPH
Vice President of Research Programs | PKD Foundation
Christopher Boone, PhD
Vice President, Global Head of Health Economics and Outcomes Research (HEOR) | AbbVie
Dr. Christopher P. Boone serves as the Vice President, Global Head of Health Economics and Outcomes Research (HEOR) at AbbVie. He is also an adjunct assistant professor of health administration at the New York University’s Robert F. Wagner Graduate School of Public Service, an active board member of several influential organizations, and a co-founder of a few start-up companies. Prior to AbbVie, he served in two different roles at Pfizer: Vice President and Head of Global Medical Epidemiology and Big Data Analysis at Pfizer, and Vice President and Global Head of Real-World Data and Analytics.
Dr. Boone holds, or has held, appointments to some of the most influential national committees focused on health data and patient centricity, including the Board of Directors for Global Medical Response, the Board of Directors for the Stewards of Change Institute, the Executive Board of Directors for the Patient Advocate Foundation and the National Patient Advocate Foundation, the U.S. Department of Health and Human Services (HHS) Federal Health IT Policy Committee, the HHS National Committee on Vital and Health Statistics (NCVHS) Working Group on HHS Data Access and Use, the inaugural advisory group for American Society of Clinical Oncologists’ (ASCO) CancerLinQ, the Board of Directors for SHARE for Cures, the Robert Wood Johnson Foundation’s Data Across Sectors for Health (DASH) Initiative, and the Interoperability Committee for the National Quality Forum.
Dr. Boone earned a B.S. from the University of Tulsa, a M.H.A. from the University of Texas at Arlington, a Ph.D. from the University of Texas at Dallas, and two executive certificates from the Harvard Kennedy School. He is a Fellow of the American College of Health Executives and a Fellow of the Healthcare Information Management & Systems Society.
Smith (Smitty) Heavner, PhD
Senior Scientific Director | Cure Drug Repurposing Collaboratory
Dr. Smith Heavner, PhD, RN, (he/they) is adjunct faculty in the Department of Public Health Sciences at Clemson University. As a nurse, Dr. Heavner specializes in critical care and emergency medicine with more than ten years of clinical experience. He serves as Scientific Director of the CURE Drug Repurposing Collaboratory, a private-public partnership of the Critical Path Institute, the Food and Drug Administration, and the National Institutes of Health National Center for Advancing Translational Science. Dr. Heavner is an active member of the Society for Critical Care Medicine including serving on the core committee of the Discovery Network VIRUS COVID-19 Registry. Dr. Heavner is a member of the 2022-2023 cohort of Global Clinical Scholars at Harvard Medical School.
Angela Dobes, MPH
SVP, IBD Plexus | Crohn’s and Colitis
Angela Dobes, MPH, works for the Crohn’s & Colitis Foundation. She is the senior vice president of IBD Plexus, a revolutionary data platform and biorepository that redefines how the research community studies inflammatory bowel disease (IBD) to advance next-generation discoveries and game-changing therapies and improve the quality of life of patients living with IBD. Ms. Dobes also oversees all direct-to-patient research and engagement initiatives at the Foundation.
Ms. Dobes devotes much of her time to advancing patient-centered research and is passionate about ensuring research, care interventions and treatments are meaningful to patients. She is the co-chair of the Trust and Patient-Centeredness Working Group for the Agency for Healthcare
Research and Quality Clinical Decision Support Innovation Collaborative. In addition, her work has been funded through organizations such as the Patient-Centered Outcomes Research Institute and The Leona M. and Harry B. Helmsley Charitable Trust.
She strives to elevate the important role patient registries and biorepositories play in the pursuit of high-value and high-quality research through volunteering on external committees and initiatives, including The National Academies of Science, Engineering & Medicine project titled, Data Capacity for Patient-Centered Outcomes Research: An Agenda for 2021 to 2030.
Prior to her experience at the Foundation, Ms. Dobes worked for clinical technology and pharmaceutical organizations, where she has led implementation of various technology solutions focused on business optimization and accelerating the delivery of new therapies to patients safely.