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 connected objects, which are “composed of sensors designed to transmit information via a mobile application or a web service” [BEY 17]. More focused on data than on knowledge, applications intended for self-quantification aim to collect, measure and compare various variables in order to improve well-being, and maintain or improve health status [CAM 16]. The incursion of new players in this very lucrative market – only 32% are from health sectors such as medical industries, insurance, hospitals and physicians according to [STA 18] – reveals different concerns and interests. Adrian Staii identifies the economic models that regulate this market, as well as the actors who continue to invest [STA 18, pp. 217–218]: 28% are pure players who develop activities in the field of mobile health; 23% are actors outside the health sector (IT and digital industries) and 11% are non-market organizations (associations, NGOs, etc.). Thus, connected health may prove to be one of the most blatant indicators of the loss of autonomy of traditional health players in a market now dominated by digital players, who are legitimate in prescribing standards in the well-being market [ibid, p. 220].
The book is organized in eight chapters. The first two chapters focus on the field of health information and its evolution in the context of Open Access, and aim to characterize health information from the point of view of its uses and associated practices.
Focusing on scientific information, Chérifa Boukacem-Zeghmouri and Hans Dillaerts report on the regulations induced by Open Access, which has developed significantly in recent years in all scientific fields. However, its adhesion and legitimization are particularly significant in the health field. Plan S, which encourages the publication of research results from public grants in journals or platforms that respect the founding principles of open science, has strongly changed the model of scientific communication in the health field, since scientific research in this field is essentially based on calls for proposals. Moreover, the introduction of new publication models and new actors (Gold publishers, megajournal publishers, preprint servers or predatory publishers), the positioning of historical actors who produce medical information within STM publishing, new practices in terms of publication, dissemination strategies, valorization and mediatization of knowledge all take new criteria into account, such as the general public or reputation on social networks. The researchers situate their reflections in the current context (2020–2021), that of the Covid-19 pandemic, and show that the health crisis highlights the importance and complexity of the issues of publication and dissemination of validated scientific information. Finally, they raise the question of the future of scientific journals, which are not equipped and organized to disseminate research results in real time, to the benefit of preprint platforms, which receive researchers’
