Open health data?

Bérut, Chloé

Open health data? - 2025.


69

France’s healthcare reimbursement system has generated particularly rich health data repositories. Although protected due to their sensitive nature, these data have nevertheless been subjected to open data policies that, over time, have favored different public and private actors. While the open data movement advocates broad and undifferentiated access, this article examines the political dynamics that have instead led to a selective and variable opening of health data. Based on semi-structured interviews and document analysis, the study offers a qualitative and comparative account of two major reforms of access to health data: the August 13, 2004 law on health insurance, and the 2016 healthcare system modernization law. The findings show that digital entrepreneurs played a marginal role, while institutional struggles within the healthcare system were central to shaping policy change. The article thus invites reconsideration of the relationship between the digital sector and sector-specific public policy, and, more broadly, questions the role of policy entrepreneurs in highly structured institutional settings.

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