Send message to Authors

Paper short abstract

Investigating data-mediation platforms’ valuation practices and normative visions of what constitutes good, responsible, or trustworthy data sharing and reuse, we shed light on how health data is valued within the European health data economy.

Paper long abstract

Health data are commonly framed by industry and policymakers as valuable. Yet the value of health data is not intrinsic or given. We argue that data-mediating platforms, defined here as for-profit companies that connect data producers (e.g., hospitals) and data users (e.g., pharmaceutical companies) to enable data sharing and reuse, play a significant role in configuring health data as valuable and in addition making data part of what is commonly framed as a data economy.

Drawing on fieldwork and interviews with data-mediating platforms in Europe, we aim to understand how these actors actively construct the conditions under which health data acquire visibility, mobility and come to support various types of value generation. This happens, for instance, by assembling datasets across institutions and framing diversity and representativeness of data as sources of worth, by ranking datasets internally according to a hierarchy of data products, or by pricing datasets through matchmaking approaches. Additionally, European data-mediating platforms actively frame both themselves and the markets in which they operate as distinct from the US data economy, foregrounding specifically “European” moral values. By describing valuation practices and normative visions of what constitutes good, responsible, or trustworthy data sharing and reuse, we shed light on how health data come to embody particular types of value within a European health data economy.