Unlocking the Power of Mortality Data in Real-World Evidence: Overcoming Barriers and Driving Innovation
Mortality data are a critical component of real-world evidence (RWE), yet fragmentation across data sources continues to limit their completeness and reliability. No single dataset fully captures deaths, with gaps existing across electronic health records (EHRs), government databases, and publicly available sources. During an ISPOR 2026 Annual Meeting session, speakers highlighted the extent of this challenge through a case example demonstrating substantial undercapture of mortality events.
In this example, EHR data identified approximately 1000 deaths. The addition of real-world obituary data more than doubled the number of identified deaths, contributing an additional 1100 cases, whereas linkage to the Social Security Death Master File identified 213 additional deaths. These findings illustrate how reliance on a single data source can substantially underestimate mortality and introduce bias into outcomes research. By integrating multiple complementary data sources, RWE studies can identify deaths missed by structured medical systems and capture risks that may not be apparent in traditional clinical trial settings.
Improving mortality data requires attention to several key attributes, including coverage, completeness, timeliness, transparency, and accessibility. Speakers emphasized the value of combining diverse sources, such as government registries, medical records, and public announcements, while recognizing the strengths and limitations of each.
Advancing the utility of mortality data will depend on greater data standardization, modernization of data infrastructure, and thoughtful integration of multiple data sources supported by advanced analytics and collaborative data-sharing efforts. Collectively, these approaches can strengthen mortality endpoints and enhance the credibility of RWE for clinical, regulatory, and payer decision-making.
Reference
LaBonte J, Veeranki P. Unlocking the Power of Mortality Data in Real-World Evidence: Overcoming Barriers and Driving Innovation. Presented at: ISPOR 2026 Annual Meeting; May 17-20, 2026; Philadelphia, PA.
