Information Practices and Knowledge in Health. Группа авторов
“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’ publications as they progress.
Between opportunities and risks, this first chapter provides elements for understanding the changes underway for all of the actors in scientific and technical information (STI) within the health field.
Chapter 2, written by Céline Paganelli and Viviane Clavier, offers a methodological contribution aimed at characterizing health information by studying the information practices of health professionals and the organization of knowledge. Thus, returning to the documentary perspective, which approaches treatments according to their uses, health information is presented as strongly linked to contexts of use and practices. Based on the results of field studies and corpus analyses conducted in the field of health for more than 10 years, the researchers propose to rediscuss the contours of health information and put forward elements that allow it to be characterized.
The following chapters aim to understand how actors, whether professionals or citizens, inform themselves, how questions of evaluation of the information collected arise in a sector where the reliability of information is crucial and how health literacy can be considered in digital environments or in relation to specific populations.
In Chapter 3, Eloria Vigouroux-Zugasti, Olivier Le Deuff and Amar Lakel propose a reflection on health literacy in digital information environments. A concept that appeared in the early 1970s, in parallel with that of information literacy, health literacy goes far beyond the framework of informational or media skills and is becoming, particularly with the evolution of health information provision, a public health issue and challenge. In this chapter, the authors question digital health literacy based on the results of field studies: an automatic analysis of web corpora containing health information, as well as a longitudinal qualitative survey on online health practices among a retired population, using digital technologies. The results highlight several trends: the dominant place of the press and health professionals in the health information available on the Internet and the very minor voice of patients. They also show the need for users to develop skills that will enable them to be more comfortable when searching for health-related information.
Digital health literacy covers a variety of skills (informational, digital, media-related, health-related, etc.) that are difficult to evaluate because they require regular updating. The acquisition of these skills is a matter of training, as well as of mediation mechanisms, the reinforcement of which, by relying on health professionals and mediation actors, seems to be a necessity. However, beyond the aspects relating to training and mediation, the chapter clearly shows that public health policies must take up the issue of digital health literacy insofar as it constitutes a major challenge for therapeutic education.
Chapter 4 is written by two Finnish researchers from the discipline of Library and Information Science: Kristina Eriksson-Backa and Stefan Ek. These researchers are interested in the health information behavior of older people – their interests, the sources they use, the reliability criteria given to information sources, etc. – and propose methods to assess their level of health information literacy and medical knowledge. The notion of information behavior is borrowed from Tom Wilson4 and the empirical results were obtained through a survey sent by mail to 1,000 Finns aged 65–79 years. A total of 281 responses were completed and returned by a majority of women (57%), almost half of whom were aged 65–69 years and had an intermediate level of education (44%).
Health information literacy refers to skills related to information literacy, the ability to recognize a need for health information, evaluate and use this information in daily life to make good health decisions, use information ethically and legally and so on. Most studies relate literacy levels to the age of individuals and their ability to read and understand health-related materials. There are many questionnaires designed to measure health literacy. Recent studies have shown an association between low health literacy, poorer health status and increased use of hospital care. Conversely, better health literacy could be an important factor in the adherence to prescribed treatments. One of the contributions of the authors’ research is to highlight a link between the mastery of health information and the perception of patients when communicating with health professionals.
The next two chapters address issues of prevention in health information and communication.
Thus, Chapter 5, written by Cécile Loriato, proposes to study information on HIV/AIDS prevention from the perspective of the categorization of audiences and the hierarchization of actors in the journalistic narrative. Since the end of the 2000s, new biomedical prevention tools have been proposed, including Pre-Exposure Prophylaxis (PrEP), which is used for HIV prevention by HIV-negative people and is mainly recommended for men who have sex with men (MSM). The publicization of PrEP has sparked controversy around homosexuality, HIV and risk because it calls into question years of prevention based on condom use as the only known and effective tool. In this context, the researcher studies the construction of the journalistic narrative on biomedical prevention. She examines, on the one hand, the use of epidemiological categories to designate people at risk and, on the other hand, the hierarchical structure of the journalists’ account of prevention, in order to understand how this contributes to the total or partial exclusion of certain actors, actions, events or problems. The results show that information on biomedical HIV/AIDS prevention is constructed mainly from the point of view of scientific experts and mobilizes mostly stigmatizing epidemiological