Work

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

Year: 2024

Type: article

Abstract: 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.

Source: Proceedings of the ACM on Human-Computer Interaction

DOI: 10.1145/3687032

Authors: Dylan Thomas Doyle, Casey Fiesler, Jessica Pater, Jed R. Brubaker

Institutions: University of Colorado Boulder, Parkview Health

Language: English

Topic: Research Data Management Practices

Subfield: Information Systems

Field: Computer Science

Domain: Physical Sciences

SDG: Reduced inequalities

Open Access status: hybrid

Funder: Universitas Brawijaya