From public to market use: a historical perspective on the changes in health data collection and use in France from 1930 to the present

Abstract

Purpose This study aims to understand the progressive marketization of health data collection and use, through a study of its historical development in France, from the 1930s to the present day. Design/methodology/approach The authors collected a set of legal, institutional, political and media data. These came from the INA (National Audiovisual Institute), the French national newspaper websites and the websites legifrance.gouv.fr and vie-publique.fr. The authors then conducted a thematic content analysis. Findings The study results highlight the changes in the health-care system related to the increased use of data in France over three major periods. The first period – 1930s to 1980s – is marked by the creation of the French social security system to collect large sets of data to better manager people’s health care. The second period – 1980s to 2000s – is characterized by the adoption and assimilation of tools to manage patient data through several national and European regulations. The last period – 2000s to the present – saw the introduction of measures in favor of the digitalization of health care, and consequently of data, in parallel with the advancement of digital technologies in general. The institutional dynamics in healthcare have evolved with the nature of the actors and their practices, in connection with new perceptions about health data. Originality/value This research sheds light on the historical transformation of health data collection and use in France, revealing the involvement of diverse stakeholders, the discourses driving data development and the need for regulation. It exposes the dual nature of health data collection and use, initially sanctioned by the state and public entities but later exploited for private interests.