Gesundheitsdaten als öffentliches Gut

Abstract

Routine health data, which are collected by health insurers and other agencies in the health care system, offer enormous potential for health monitoring and research. Germany has been slow to make such data available for socially beneficial purposes, partly due to concerns about privacy and data protection. Against this background, we discuss some of the most important potential uses of routine health data and call for a broader societal debate about the benefits, risks, and appropriate regulation of routine health data usage.We then review the Western Australian Data Linkage System as an example of a data infrastructure that is characterized by high levels of stakeholder and patient involvement and a sophisticated method of privacy protection. While Germany does not need to copy this approach, we hope that the experiences of Western Australia and other countries will stimulate and inform the overdue debate about a modern, responsible, and sustainable approach to socially beneficial health data usage in Germany.