data use

Freedom of information: The extroverted sibling of defensive data protection

Data already circulating in the healthcare system should be used by research and patient information professionals in a more comprehensive and resolute manner; this is the stance taken by the Hamburg-based healthcare expert Prof. Jonas Schreyögg in his guest article on our blog. In a report commissioned by the Bertelsmann Stiftung, the extent to which this is legally permissible – and perhaps even necessary – is taken up by two Regensburg-based law scholars, Thorsten Kingreen and Jürgen Kühling. In their summary, the two authors propose the following course of action: We should begin by ensuring “data transparency” (as stipulated by § 303a-e in Germany’s Social Security Code or SGB V), then facilitate the use of existing comprehensive inpatient data (by ordinance or directive) at the German Institute of Medical Documentation and Information (DIMDI), and then extend (by law) the data volume to include outpatient structural and billing data. This article summarizes the main findings of their expert assessment.