Risk and Resilience in Health Data Infrastructure

Abstract

Today’s health system runs on data. However, for a system that generates and requires so much data, the health care system is surprisingly bad at maintaining, connecting, and using those data. In the easy cases of coordinated care and stationary patients, the system works — sometimes. But when care is fragmented, fragmented data often result. Fragmented data create risks both to individual patients and to the system. For patients, fragmentation creates risks in care based on incomplete or incorrect information, and may also lead to privacy risks from a patched-together system. For the system, data fragmentation hinders efforts to improve efficiency and quality, and to drive health innovation based on collected data. Efforts to combat data fragmentation would benefit by considering the idea of health data infrastructure. Most obviously, that would be infrastructure for health data — that is, infrastructure on which health data can be stored and transmitted. But it should also be an infrastructure of health data — that is, a platform of shared data on which to base further efforts to increase the efficiency or quality of care.