Paper short abstract:

This paper studies the conflict toward health data definition as a collective good in France – “heritage” or commons - linked to distinct forms of data government. It analyses two rival sociotechnical arrangements, entailing different allocation of power among data producers, users and the State.

Paper long abstract:

This paper explores the controversial establishment of health data as a public good, although data sharing is widely accepted as desirable for medical research and innovation. It focuses on the mobilization against a national program for health data centralization.

Since 2019, the French government Health Data Hub project faces mobilisation from medical and IT workers. This paper discuss how this conflict relates to a controversy about health data definition as a collective good, and how and by whom data should be governed. It analyses two rival sociotechnical arrangements, entailing different allocation of power among data producers, users and the State. I start by looking at the national project. It aims to encourage exploitation of national health data “heritage” as an asset for medical innovation. The sociotechnical imaginary it mobilises naturalises data as a resource and is blind to data materiality. Then, I look at the opponents who advocates for data as health commons, within Free Software and communalism of science ideals. They deny data as a resource, claiming it as the product of their work. Finally, in an ecological approach, I show data materiality currently allows producers to control it, which is key to their medical and research strategies. They feel threatened by innovation policies menacing to detach data from them.

This paper is based on a PhD research about hospital data work and the government of health data; at the intersection of STS, sociology of medicine and political science.