LES CAHIERS DU NUM ÉRIQUE VOLUM E 12 – No 1-2/ 20 16

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LES CAHIERS DU NUM ÉRIQUE

VOLUM E 12 – No 1-2/ 20 16

7 CONTRIBUTORS

9 Introduction – J^OËLCOLLOC,BRUNO HÉNOCQUE

13 L’impact social des big data en soins de santé en Australie PETER SUMMONS,BRIAN REGAN

Cet article illustre certains des risques potentiels pouvant résulter de la réalisation de traitements de données du big data et des données provenant des applications d’exploration de données (Data mining), dans le cas des données de santé en Australie. Ce traitement est seulement possible si un élément de liaison commun existe et peut être utilisé pour agréger les nombreux référentiels de données collectées sur un individu. En s’appuyant sur l’exemple spécifique de l’Australie et sur la compréhension internationale du big data en soins de santé, cet article postule certes que les risques sont internationaux, mais que la perception du risque dépend de la culture et des attitudes et que le traitement, l’étendue et l’effet de risque sont déterminés de manière différentielle par les lois de chaque pays et par sa perception du risque futur représenté par les nouvelles applications de grands volumes de données.

31 From Personal Health Record to Shared Health Record. Towards a documentary mediation system

SOUAD ODEH

The French Personal Health Record (dossier médical personnel, DMP), introduced in 2004, is a complex issue. This French national project has a disturbing history and was highly criticized for its implantation costs.

Therefore, it's important to understand what are the specificities of DMP compared to other information systems already established in France? How is it perceived by French medical body? Why its acceptance, at a national level, has been so much delayed? And what are the conditions promoting its success? This article aims to clarify, at the first level, the specificities of

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214 Les cahiers du numérique – n° 1-2/2016

DMP. It traces, in a second time, the essential moments of its political history. We focus, in a third time, on social conditions hindering his acceptance by healthcare professionals and we conclude on the potential value of DMP while considering it as a documentary mediation system.

51 Medical information in health fora CÉLINE BATTAÏA

This article carried out in the field of information and communication sciences. It focuses on medical information in heath fora. The success of these systems results from an informational and emotional motivation from the participants. They can access testimonials, reassurances or medical information. These can however be available from validated sources.

Therefore, the aim of this work is to highlight the way people access scientific information and the way they are communicated in health fora.

73 Big Data and design of clinical decision support system: Towards a management of the medical accountability?

CHRISTINE SYBORD

Given all the challenges that Big Data is facing for storage, analysis and protection of personal health data, assessing a Clinical Decision Support System (CDSS) has become critical for both physicians and patients. In this context, the article covers how to design a CDSS and the conditions under which it can be integrated into the clinical workflow of medical practice.

After defining the economic impact of Big Data, the first section will introduce the technical and cognitive framework of CDSS. Once the positioning of a CDSS is defined, the second section will analyze the legal foundations of the three-fold framework patient – physician – CDSS/Big Data. The third section is a critical analysis of the knowledge based system referring to the theory of the general system. This critical analysis introduces the theoretical framework of the CDSS design. The fourth section presents the sociocogniciel model of a CDSS. This model surrounds the medical accountability.

109 Ethical values big data of health JÉRÔME BÉRANGER

With the constant development of e-health, telemedicine, m-health and medical Big Data, legal changes are accelerating, economic disruptions that are growing, there is a questioning of principles and ethical rules surrounding the doctor-patient relationship.

The handling and use of medical information are in perpetual balance between confidentiality and transparency in which the ethical and legal questions make sense. So many questions that characterize a certain anxiety

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Summary 215 and loss of confidence among health actors, in the same values, management and use of these Big Data, and causing an overall feeling profoundly destabilizing.

In this context, an ethical evaluation of medical personal data appears as fundamental to control their use. This requires knowing the informative or intrinsic value, management and exploitation.

133 E-inclusion of persons with psychiatric disability.

Transforming digital traces into a common and participatory environment?

HADI SABA AYON

Imprints of users trace the landscape of a “dynamic ecosystem” (Doueihi, 2013), derived from any dialogic activity with the connected machines, which constitutes the digital. Vulnerable persons, including those with psychiatric disability, put in the Cibercultura (Rüdiger, 2011) an end to their isolation towards a new digital sociability. According to the Human Development Model-Disability Creation Process (HDM-DCP2), the disability occurs in the interaction between individual factors and environmental factors (Fougeyrollas, 2010). But if we approach the digital as an environment, how would it promote the inclusion of the population with psychiatric disability? The profiling of the individual digital use allows large companies of the Internet to collect imprints, give them meaning and therefore use these traces for various purposes. What would occur if the production and management of these digital traces (Mille, 2013) was directed towards contributing uses, in order to make digital commons (Le Crosnier, 2010)? Our article questions the digital uses of a group of persons with psychiatric disability in Le Havre in 2013-2014. Our ethnomethodological study and our observation of their activities show a use of the digital further oriented towards social contact and entertainment.

The group members’ hesitate to participate in the montage of a collaborative online project, mistrustful of the intrusion of the digital in their life characterized by behavior disorders (Zribi, Sarfaty, 2008). We call for a “transliteracy” (Merzeau, 2014) for an education about the digital and to a defiance of the difficulties for a social participation of this population.

Investing digital traces in common collaborative works could be a way to build an inclusive society with digital.

171 The use of computerized systems to control everything and everyone ALAIN CARDON

We present the case of development of a system capable of unifying meta autonomous systems generating artificial mental representations according to theirs corporeity’s and we ask the question about the life to come for humans in this kind of environment.

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187 The ethics of autonomous information systems towards an artificial thinking JOÊL COLLOC

Projects, situated in the crossroads of the cognitive sciences, the neurosciences, the computing and robotics currently concern the creation of autonomous artificial beings capable of thinking. This article presents a model of comparison of the human thinking with a numerical thinking that relies on four hierarchies: the classification of information systems, the cognitive pyramid, the linguistic pyramid and the numerical information hierarchy. After a state of the art on the nature of the human thinking, the feasibility of autonomous multi-agents systems endowed with an artificial consciousness and capable of thinking is discussed. The ethical aspects and the consequences for the humanity of such systems are evaluated. This subject causes at present the reaction of the scientific community.

213 Summary/Abstracts