Since at least the late 2000s, numerous stakeholders have been advocating for the large-scale reuse of health data. This seminar studies the various ways in which data reuse strategies are implemented across different collectives and sheds light on their broader consequences for healthcare.

Organisation

Laurène Assailly (Centre Maurice Halbwach, ENS)
Quentin Dufour (Centre Norbert Elias, Aix-Marseille Université)
Camille Girard-Chanudet (Lisis, Université Gustave Eiffel)

Program for 2026-2027 (Paris time)

Session 1 – Data corporations and markets – January 18 2027  – 2PM-5PM 

• • Laurène Assailly (ENS-PSL), Camille Girard-Chanudet (UGE) and Quentin Dufour (AMU) – Introduction by the organizing committee
  • Miriam El Mahdi (University of Copenhagen)

Session 2 – Data infrastructures – February 1 2027 – 3PM- 6PM

• • Itzelle Medina-Perea (University of Sheffield)
  • Joseph Donia (University of Milan)

Session 3 – Data Care and emotional labor – April 5 2027 – 2PM-5PM

• • Marta Choroszewicz (University of Eastern Finland)
  • Mie Winther Christensen (Roskilde University)

Session 4 – Data regulation – May 3 2027 – 2PM-5PM

• • Rébecca Demoule (Paris 1 Panthéon-Sorbonne University)
  • Andrea Martani  (University of Zürich )

Session 5 – Genomic data – June 7 2027 – 2PM-5PM

• • Jarmo De Vries (University of Edinburgh)
  • Mareile Kaufmann (University of Oslo)

This is a full online seminar. To attend one or several sessions, ask for a link by registering on: CLICK HERE 

Presentation 

Healthcare generates and continuously sustains vast datasets on a daily basis (clinical trials, cohort studies, medico-administrative databases, electronic health records…) which are produced in a variety of formats (texts, images, audio files, numerical values) and serve multiple purposes, including research, clinical care, administrative management, and economic valorization. Since at least the late 2000s, numerous national and international stakeholders have advocated for large-scale reuse policies (e.g., Medical Research Council data sharing policy in the UK; Digitalisation Strategy for Health and Care in Germany; National AI and Health Data Strategy in France; European Health Data Space at the European level). Reuse refers to the assignment of new and unprecedented purposes to existing datasets. It has been framed both as a key driver of innovation and as the cornerstone of promises to improve population health. Data reuse is thus expected to foster public health policies, strengthen disease prevention and management, predict epidemics, contain healthcare costs, and assess risks associated with medication use.

Beyond these promises, reuse is also a practical and conceptual problem for those involved in its implementation. Health data are not naturally reusable. Produced within specific work ecologies (Strauss, 1978; Star & Strauss, 1999), they follow sinuous data journeys (Bates et al., 2016; Leonelli & Tempini, 2020; Beaulieu & Leonelli, 2022) before being effectively instaured (Latour, 2015) as distinct objects and made reusable. This data journey involves numerous frictions and operations on and around data (Edwards, 2010; Edwards et al., 2011) performed by the actors of reuse (health administrations, data repository managers, research teams); as recent studies on health data have shown (Fiske et al., 2019; Pine, 2019; Hoeyer, 2023).

These operations are not merely technical. They are also political, ethical, legal, and epistemic. Reuse thus raises key questions for the social sciences: What kinds of data and reuse practices are at stake? Who are the actors organizing these reuses? What work on and around data is required to make them reusable? Under what conditions is data access granted? What conflicts and tensions do reuse practices generate? How do original production contexts influence subsequent uses? And what are the implications of reuse for individuals ?

At the crossroads of Science and Technology Studies (STS), anthropology and sociology of health, this seminar explores the multiple modalities of health data reuse strategies within the collectives dedicated to their implementation. It seeks to shed light on the effects of data reuse on healthcare. The seminar’s aim is to bring together and contrast a variety of empirical cases addressing the problems of reuse, across different types of practices, actors, institutions, and national frameworks. It welcomes contributions from all fields of the social sciences of health, including sociology, anthropology, history, political science, and law.