Designing for Researcher Access in the U.S. Mortality Data Ecosystem

Access to mortality data is critical for researchers for various reasons, including the development of life-saving medical interventions. However, high-quality mortality data is typically unavailable for researchers to access in a timely manner due to bottlenecks and inefficiencies in the coordination of managing mortality data across a vast information ecosystem. To identify opportunities to improve access to mortality data, we conducted a qualitative interview study with 20 experts with direct knowledge and experience with mortality data systems. From these interviews, we mapped the mortality data ecosystem and found that policy constraints are the main underlying cause of bottlenecks and inefficiencies. We argue that policy intervention is required to optimize the coordination of mortality data between databases and between organizations. To support researcher access to mortality data, we present guiding principles for designers seeking to improve the mortality data ecosystem. These principles contribute to CSCW scholarship focused on the challenges of coordination across large information ecosystems and the tradeoffs between technology and policy when designing such systems.

CCS Concepts: • Human-centered computing → Collaborative and social computing systems and tools; Collaborative and social computing theory, concepts and paradigms; Empirical studies in collaborative and social computing.