Published on 13/03/2022

Health ecosystem: new ways of regulating information

Danielle Dufour-Coppolani, Parina Hassanaly In I2D - Information, data & documents2016/3 (Volume 53)pages 28-29

Today, health data is a very important subject that concerns a varied environment and diverse fields of activity. Information professionals and health professionals are jointly concerned by the challenges of health policy and by the uses of this data.

The field of information management and information systems is at the heart of several structuring projects of the health system that interest the entire population. Won't the opening up of health data, which is giving rise to Open Data for health, result in exponential Big Data for health? And the problems of the DMP, the personal medical file that has become a shared medical file, another important facet of this subject, have been revived, particularly with the law on the modernisation of the health system, recently enacted in France. The legal and juridical framework must be observed precisely in order to measure its impact.

This dossier devoted to health data is intended for information professionals, but also for the world of health in general (hospital and private practitioners, teachers, etc.), lawyers and, in general, for all those concerned by the changes in health policy in France. It was intended and designed to indicate the opportunities offered to information professionals in terms of uses and prospects. Its ambition is not to draw up a state of the art on the subject at a given moment, but to propose a focus on issues that may give rise to various, more in-depth studies. However, it also aims to reveal, if need be, the fields of competence of the information professions to other professionals concerned by health data in general.

Since it is essential not to be documentation-centric, in other words to conceive of documentation as being closed to a disciplinary field and to the world - a point which we feel is important to emphasise - we wanted to show how the uses and skills of the documentary function make it possible to enhance the value of the related professions and to make their many facets known to all audiences.

Thus, the first section on information professions presents various experiments carried out on health data in the public and private sectors. An academic, researcher and trainer also explains the issues at stake in terms of training, and a company director shows us the work carried out on the semantic analysis of a tool that corresponds to the needs of researchers in a given field.

The following section focuses on the information system and describes the ecosystem as a whole, and then focuses more specifically on the strategy of the State's information systems, particularly for the implementation of the DMP by one of the project's initiators, as well as, on another level, on the issue of Open Data.

Finally, since it is also essential to raise awareness of the health data environment so that information professionals can grasp and appropriate it, the third section of the dossier sets out the economic and legal issues at stake, as well as the impact that this health information may have on users.

Posted on on 04/10/2016