Who and What Are We Missing in Real-World Data? How Do We Improve the Capture of Social Determinants of Health?
Author(s)
Moderator: Nirosha Lederer, PhD, Aetion Inc, Boston, MA, USA
Panelists: Michelle Tarver, MD, PhD, Center for Devices and Radiological Health, U.S. Food and Drug Administration, Silver Spring, MD, USA; Alice Turnbull, PhD, MA, BSc, Health Data Research UK, London, UK; James J Wu, MSc, MPH, Kite Pharma/Gilead, Santa Monica, CA, USA
ISSUE: The proliferation of real-world data (RWD) have led biopharmaceutical manufacturers, regulators, payers, and providers to focus on utilizing RWD to support evidence-based decision-making in healthcare. The inclusion of high-quality sociodemographic information (e.g. race, gender, ethnicity, geography), especially for people historically underrepresented in medical research, is critical to inform research which enables the delivery of more equitable care with respect to access, quality, and outcomes. Across Europe, comparative data on health outcomes, comprehensive social determinants, and socio-economic structures are variable, making stratified analyses among these underrepresented populations difficult. In both the US and EU, race, ethnicity, and gender are recorded inconsistently across different RWD sources, with many lacking reliable information on these variables and data collection methods. The absence of this data and its analysis can lead to gaps in evidence-generation, further contributing to inequities in healthcare delivery.
OVERVIEW: During this session, the moderator will provide an overview of data capture for key socio-demographic information in the US and EU and its impact on research analysis and insights. Then, panelists will discuss how a lack of sociodemographic information in RWD inhibits efforts to deliver equitable healthcare in different healthcare systems, and how the collection and analysis of high-quality RWD can be utilized to advance health research and care delivery for all populations. The discussion will be followed by an audience Q&A.
Conference/Value in Health Info
Code
312
Topic
Real World Data & Information Systems