Session (CTI)

PURPOSE: Understanding health disparities by race and ethnicity is a priority for government, payers, industry, and healthcare delivery systems. Moreover, ensuring that research is representative is critical to have more inclusive, culturally sensitive, trustworthy, and equitable treatments and care. To address those topics, accurate and complete data on race/ethnicity is key. However, there are uncertainties regarding the reliability of those data in real-world data (RWD) sources, given the sensitive, debatable, and (inter)personal nature of such data. We will discuss the accuracy of race/ethnicity data in RWD, the implications for research, healthcare, regulatory and policy-making and personalized solutions to ensure accurate race/ethnicity data. DESCRIPTION: Martina Furegato will discuss ways to capture race/ethnicity in the RWE space, specifically in RWD and the importance of having reliable information captured in large scale data sources used for decision making processes and regulatory bodies. She will present a study that evaluated the quality of race/ethnicity in Oracle EHR RWD compared with self-reported data from a large population-based US survey. Carla Rodriguez-Watson will share how the RAISE (Real-world Accelerator to Improve the Standard of collection and curation of race and Ethnicity data in healthcare) Action Framework can help health systems implement priorities and strategies to improve race/ethnicity data. She will discuss tools and incentives available at the national level to improve infrastructure to collect and exchange race/ethnicity data; and examples of how different organizations have leveraged those tools.Rachele Hendricks-Sturrup will discuss various types of real-world patient-generated health data (RWPGHD) that can be used in conjunction with EHR data, and implications for patient subgroup analysis. She will discuss implications regarding the regulatory use and acceptability of RWPGHD to support clinical trial diversity goals and RWE reliability and quality.