Information Practices and Knowledge in Health. Группа авторов

focused on patients and patient organizations that had acquired legitimacy in the public arena, thus contributing “to a new way of thinking about the relationship between science and the general public”. This relationship, according to the authors [CAR 99, p. 10] “[was] less of an asymmetrical relationship of expertise and pedagogy, but rather [allowed for] the expression of scientific uncertainties, the sensitive involvement of caregivers or the claims of patients” [ibid.]. The media appear to be the key players in this publicizing of health issues. As early as the 1980s, television relayed appeals for donations or compassion for the Telethon [WAL 98]; the “media coverage” of AIDS or the story of contaminated blood provided the opportunity for “tests of strength” between the political, medical and judicial arenas, as well as for the internal tests of strength in the journalistic field on the “legitimate definition of information” [CHA 94]. Beyond the media space, society as a whole is, according to the health sociologist Pierre Aïach [AÏA 98] and the anthropologist, sociologist and doctor Didier Fassin [FAS 98], going through a process of medicalization that they consider to be a cultural transformation. Protecting ourselves and fighting against illness, detecting and preventing risks, staying healthy, etc. have become a constant preoccupation, elevated to the rank of a movement: healthism [CRA 82]. This “concept”, which emerged during the 1970s and 1980s, refers in particular to the Foucauldian thesis according to which individuals come to adhere to social norms of their own free will, even though they are not forced to do so. According to Hélène Pouliquin, healthism is recognized as “an elevation of health to the rank of virtues and morality, accompanied by an individual duty to maintain health by making individuals responsible, even if at the same time the state disengages from acting on the social, political and economic determinants of health” [POU 15, p. 26]. Promotional discourse and consumer practices are part of this trend, as Benoit Lafon shows with another neologism he calls “sanitarization” to indicate, once again, a double movement perceptible in the “consumer press” [LAF 20]: on the one hand, the consideration of public health issues in entire sectors of the economy, which, beyond agriculture, concern various industrial activities such as agri-food, chemistry or electronics. On the other hand, the increasing consumerization of healthcare is manifested in the growth of medical devices, “reimbursed” by complementary health insurance organizations in competition with each other (glasses, hearing aids, etc.), or by the ever-expanding dynamics of the drug industry towards other areas to be medicalized (well-being, smoking, etc.). This same tendency can be found in food, as attested by a third neologism coined in 2009 by the food sociologist Jean-Pierre Poulain [POU 09]. Thus, the “nutritionalization” of food refers to the management of food in the context of a specific pathology by a health professional specialized in nutrition. It also refers to the massive diffusion of nutritional knowledge in health education, prevention campaigns and the media.

A second movement is linked to the reconfiguration of public service in hospitals and health institutions, and to the evolution of forms of management that aim to reconcile a number of “complex and manifold challenges” [GRE 19]. The context is marked by cost reduction, rationalization of professional activities, inequalities in social and territorial access to healthcare, the aging of the population and the increase in chronic diseases. Nevertheless, the healthcare on offer must always be improved in order to ensure patient satisfaction. Thus, the development and modernization of information systems for public and private institutions is part of a policy to improve administrative, logistical and care processes [VIG 18]. Among these systems, the Electronic Patient Record (EPR), although not recently introduced, is emblematic of the evolution of hospital practice and is the result of both the need for traceability of actions and decisions associated with patient care and the need for coordination between specialists in charge of patients [MOR 18]. The deployment of EPRs in healthcare institutions has made it possible, thanks to surveys of health professionals, to specify expectations in terms of information (relevance, availability, reliability, security, real-time updating, etc.); integration of heterogeneous data or definition of knowledge meta-models to promote semantic interoperability between terminologies [CAB 17]. Thus, the organization of knowledge and the information practices of professionals are at the heart of reflections on the design or uses of these health information systems.

A third movement concerns patients taking responsibility for their own health. The notion of “health democracy”, which appeared in the political field and was used for the first time by the public authorities in the early 2000s, covers citizen participation in health policies [ARV 16] and was officially included in the functioning of the French healthcare system by the law of March 4, 2002, relating to the rights of patients and the quality of the healthcare system [LET 09]. The role of users, sick or healthy, of their relatives or of patients’ associations is thus recognized when it comes to health issues [LEF 18]. Combined with the development of liberal economic policies in the health sector, “health democracy” seems to have led to an increase in control regulations [DEM 14], the emergence of the patient-client, thus promoting a consumerist approach to health [BAT 08], or even the instrumentation of users, as denounced by certain associations [LEF 18]. Nevertheless, this evolution has been accompanied by the development of systems for accessing health information, allowing patients to consult information or share their experiences; associations to publish documentation on the Internet or to structure communities for exchange and sharing. Thus, the user takes control of health issues by discussing the issues with medical professionals, supporting a loved one, or dealing with a diagnosis or the evolution of an illness, in order to find practical information or verify scientific data. According to a 2016 IPSOS survey, more than 68% of French people have already consulted the Internet to find medical information, whether it be via collaborative sites, general sites dedicated to health or institutional sites [CAS 16]. The medical profession, friends and family, and the media are also sources of information that are sought after. A real knowledge base is then developed, “lay expertise” that emerges among patients. This expertise is based on lived experience and considers that people, through their personal experience of an illness, acquire specific knowledge on the issue. It is recognized by users of discussion forums or social health networks, who consult these systems to solicit testimonies from patients or former patients [PAG 11]. It also consists of real medical and scientific expertise. Indeed, patients, often through associations that bring them together, invest in the scientific field, appropriating specialized knowledge in order to make their voices heard and participate in the governance of the healthcare system [AKR 12]. The development of this form of expertise is facilitated by access to specialized information resources via the Internet. Although the notion of the expert patient is now well established, it in fact conceals a very contrasting reality. First, because it reduces the patient’s identity to their illness [GRI 20], and second because it does not take the diversity of situations into account. The availability of information resources and easy access to digital devices do not guarantee the appropriation of knowledge. Studies on health literacy, which the WHO defines as “the personal characteristics and social resources needed by individuals and communities to access, understand, evaluate and use information and services to make health decisions”¹, show the diversity of the necessary skills (informational, media-related, medical, etc.) and the constant need to update these skills [MAR 17]. The implementation of mediation actions or systems, relying in particular on documentary mediators [TET 20], therefore appears essential. Finally, using therapeutic education to improve health literacy would contribute to supporting patients in the appropriation of knowledge related to disease and, more generally, to reducing inequalities in access to care [MAR 17].

A fourth movement concerns the development of digital devices in the service of health, a sector that is experiencing various kinds of initiatives and constant growth. Estimated at 2.7 billion euros in 2014, the e-health market is dominated by innovative start-ups specializing in telemedicine². These include technologies that enhance health knowledge³, such as those that take medical investigation further or reduce surgical risks, and that are used to rationalize and control the production of care. We should also mention other applications, such as medical imaging, training devices (for surgical procedures, for example) for learning, individual training and simulation, or even