The seminar « Health and Big Data » was organized from 2017 to 2021 by:
Madeleine Akrich, Professor at the École des Mines de Paris, researcher at the Center for the Sociology of Innovation (CSI)
Catherine Bourgain, INSERM Research Director, Director of CERMES3 – Research Centre for Medicine, Science, Health, Mental Health, Society
Éric Dagiral, Lecturor at Université Paris-Descartes, researcher at Research Center on Social Links (CERLIS)
Emmanuel Didier, CNRS Research Director, researcher at Centre Maurice Halbwachs – CMH – CNRS/ENS/EHESS
Christophe Prieur, Lecturor at Télécom Paristech, senior research fellow in the Complex Networks team in Lip6 Computer science lab at Sorbonne Université
The seminar takes place on the third Tuesday of the month, from 3 p.m. to 5 p.m., at ENS, Oikos Building, Room R2 03, 48 Bd Jourdan 75014 Paris.
Argument of the seminar
Recently, the field of health has seen the emergence of a large number of extremely diverse digital data, such as the now “open” health insurance databases (SNIIRAM), the new generation of genome sequencing data, the sensors allowing everyone to accumulate personal data, or new epidemiological surveys of unprecedented size. This creation of data or “datafication”, which concerns large, highly heterogeneous and easily circulated sets of data, is not natural but rather the product of a social activity. It also has a great many social effects.
Thus, the ability to use these data requires new skills and intermediate tools that transform the field and the professional relationships. Whether they are experts whose skills have been recently recognized or of a new importance, such as biocurators, biocomputing scientists, biostatisticians, or lay knowledge such as those used by the proponents of a “quantified self” or patients with rare diseases, they all transform the professional power relationships in place and, in particular, question the centrality of doctors and medical diagnosis in the field.
Still more broadly, these data are at the same time likely to transform both health practices and public health policies. On one hand, the effects of redistribution between the public sphere, the private sphere and the production of knowledge are important. On the other hand, private actors organized around these data (insurance companies, laboratories, and actors from the digital field – be they the GAFA giants or start-ups) negotiate new positions. Finally, the users / patients learn every day how they become diffracted into a multitude of information stored in diverse databases and how they can reuse this information for themselves personally and as collective individuals.
All these transformations have given rise to many promises, often naive, about their effects in the medical field. The seminar does not propose to believe these promises, but rather to study, on the basis of field surveys documenting and analyzing the practices observed, the datafication transforming the health field, as well as the evolutions generated by data in concrete situations. The seminar focuses on the slow and laborious transformations generated by these real social actors that are digital data.
2020-2021 Seminar program
26 November 2020: Introductory session. Catherine Bourgain, Research fellow at CERMES3, INSERM. Open access to clinical data? Reflections on the Health data Hub, data warehouses and cohorts.
21 January 2021: Éric Dagiral, Lecturor at Université Paris-Descartes. Elements for a historical sociology of health databases.
15 April 2021: Emmanuel Didier, CNRS Research Director, Researcher at Centre Maurice Halbwachs – CMH – CNRS/ENS/EHESS. Note on the surprisingly low price of health data
20 May 2021: Adrien Parrot and Juliette Alibert, Collectif Interhop. Protection and issues surrounding health data.
2019-2020 Seminar program
21 November 2019: Winston Maxwell, Director of Law and Digital Studies at Telecom Paris. The Data Protection Regulation and Medical Research, an Uneasy Coexistence
19 December 2019: Stéphanie Combes, Head of the health data administration mission at DREES, and project manager for the implementation of Health Data Hub. Health Data Hub to facilitate the re-use of health data
16 January 2020: Jérôme Hourdeaux, journalist at Médiapart, author of an article entitled « “Health Data Hub”: le méga fichier qui veut rentabiliser nos données de santé » [“Health Data Hub”: the mega file that wants to make our health data profitable], presents his investigation on contemporary health data management projects and the effects of his publications.
19 March 2020: Catherine Bourgain, Research fellow at CERMES3, INSERM. Opening access to clinical data? Reflections on the Health data Hub, data warehouses and cohorts
June 2020: to be confirmed.
2018-2019 Seminar program
15 November, 2018: Alberto Cambrosio (Social Studies of Medicine, McGill University, Montréal). Knowledge architectures for genomic data interpretation in oncology
20 December, 2018: Valérie Edel (INDS), autour de l’expérience de l’INDS, intermédiaire entre les données de santé et les chercheurs [around the INDS experience, an intermediary between health data and researchers].
17 January, 2019: Xavier Briffault (Cermes3) « Être soi et ses connexions. L’avenir 3.0 de la santé mentale ? » [“Being oneself and one’s connections. The Future 3.0 of Mental Health?”]
21 February, 2019: Mathilde Touvier (Inserm), autour de l’expérience de NutriNet [Experience from the NutriNet study].
21 March, 2019: Emmanuel Bacry (Ecole Polytechnique), L’initiative Data Science de l’X et la SNIIRAM [X’s Data Science initiative and the SNIIRAM] (provisional title).
18 April, 2019: Catherine Bourgain (Cermes3), Ashveen Peerbaye (LISIS) and Claire Beaudevin (Cermes3), « Faire sens du cancer à l’ère de la génomique » [“Making sense of cancer in the genomic era”].
16 May, 2019: Emmanuel Didier (CMH), « Données et maladies non diagnostiquées : débroussaillage » [Data and undiagnosed diseases: an initial examination].
20 June, 2019: Stephen Hilgartner (Cornell University),« Reordering Life: Knowledge and Control in the Genomics Revolution ».
2017-2018 Seminar program
21 December, 2017: Anne-Sophie Jannot (APHP), Le dossier médical électronique / The Electronic Medical Record
18 January, 2018: Henri Léridon (INED), L’enquête ELFE. Une étude à grande échelle sur les enfants / The ELFE Survey. A large-scale study on children
15 February, 2018: Maël Lemoine (Université de Tours), Mutations conceptuelles dans les projets de médecine de précision / Conceptual changes in precision medicine projects
15 March, 2018: Claude Houdayer (Institut Curie), La base de données en oncogénétique de l’Institut Curie / The Curie Institute’s oncogenetics database
17 May, 2018: Niccolo Tempini (University of Exeter), The Genie out of the Bottle? Data Valuation and Circulation Challenges for Participatory Research.
21 June, 2018: Geoffrey Bowker (UC San Diego), Information Infrastructures and Personal Sensors