Digital Health Communications E-Book
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- Herausgeber: John Wiley & Sons
- Kategorie: Fachliteratur
- Sprache: Englisch
ECHNOLOGICAL PROSPECTS AND SOCIAL APPLICATIONS SET Coordinated by Bruno Salgues There are many controversies with respect to health crisis management: the search for information on symptoms, misinformation on emerging treatments, massive use of collaborative tools by healthcare professionals, deployment of applications for tracking infected patients. The Covid-19 crisis is a relevant example about the need for research in digital communications in order to understand current health info communication. After an overview of the challenges of digital healthcare, this book offers a critical look at the organizational and professional limits of ICT uses for patients, their caregivers and healthcare professionals. It analyzes the links between ICT and ethics of care, where health communication is part of a global, humanistic and emancipating care for patients and caregivers. It presents new digitized means of communicating health knowledge that reveal, thanks to the Internet, a competition between biomedical expert knowledge and experiential secular knowledge.
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Veröffentlichungsjahr: 2021
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Table of Contents
Cover
Title Page
Copyright
Preface: Info-communication Perspectives on Digital Health Communication
P.1. The French and Quebec health systems as a heuristic context for analysis
P.2. Information and communication sciences: a theoretical corpus and methodologies for understanding digital communication in healthcare
P.3. For a critical approach to digital health communication
P.4. Digital health communication in the workplace
P.5. Digital communication in health: between strategic communication, public space and empowerment
P.6. Digital health communication: the promise of cognitive, social and emotional support
P.7. And finally, how can we take care of digital workers?
P.8. Diagnosis and treatment
P.9. References
Acknowledgments
Author Biographies
Introduction: Updating Issues of Digital Health Communication
I.1. What about digital care workers?
I.2. What about digital communication in health… ethical, empowering and emancipating?
I.3. What about new digital mediations of health knowledge?
PART 1: Digital Patient Records: Organizational Adaptations
1 Paradoxical Changes and Injunctions in an Implementation Project of the Digital Patient Record
1.1. Introduction
1.2. Organizational paradoxes and paradoxical injunctions
1.3. A case study of an implementation project for digital patient records
1.4. Resolving the organizational paradox at the individual level
1.5. Conclusion
1.6. References
2 Identifying Caregiver Practices by Analyzing the Use of Electronic Medical Records
2.1. Introduction
2.2. Review of the management science literature on professional practices and uses of electronic patient records
2.3. Professional practices and the use of tools at the heart of the conceptual framework: the “instrumental genesis”
2.4. Methodology
2.5. Results
2.6. Conclusion
2.7. References
3 Communication Approach to Patients’ Health Work: Remote Relationship and Intertwined Powers
3.1. Introduction
3.2. Reconstructing patients’ work
3.3. Field and method
3.4. Remote relationship and intertwined powers
3.5. Conclusion
3.6. Acknowledgments
3.7. References
PART 2: Care and Social Support: From Institutional Responses to Online Support
4 The Place of Care in the E-coordination of Home Care and Assistance
4.1. Introduction
4.2. Home care coordination issues
4.3. Impacts on the logic of care, roles and identities
4.4. Uses and practices of the PAACO-Globule dispositive in a support network for the coordination of complex pathways in the South Gironde region
4.5. Conclusion
4.6. References
5 Breast Cancer Prevention Online in a Crisis of Confidence Context: From Medical–Technical Discourse to Social Support
5.1. Introduction
5.2. Prevention and crisis context
5.3. Methodological choices for the analysis of an online exchange space
5.4. Results of ethnographic observation and lexicometric analysis
5.5. Conclusion
5.6. References
PART 3: Rethinking Health Expertise in Light of the Social Web
6 The Expert Patient in the Digital Age: Between Myth and Reality
6.1. Introduction
6.2. Mutating health care: the professionalization of the patient
6.3. Societal changes and the emergence of the expert patient in the digital context
6.4. Conclusion
6.5. References
7 Towards an Info-communication Categorization of Expertise in Online Health Communities
7.1. Introduction
7.2. The crises of expertise in research in information and communication sciences
7.3. Info-communicational theory of the online community link as a sociotechnical context for the deployment of online expertise
7.4. Info-communication approaches to health expertise
7.5. Framework for the community validation of expertise
7.6. Conclusion
7.7. References
8 Identification Metrics Regarding Lay Expertise in Online Health Communities
8.1. Introduction
8.2. Online health information and the notion of expertise
8.3. Data selection and presentation
8.4. Description of the measures
8.5. The multiple facets of lay expertise
8.6. Conclusion
8.7. Acknowledgments
8.8. References
List of Authors
Index
End User License Agreement
List of Illustrations
Chapter 2
Figure 2.1. Graphic synthesis of the conceptual framework of the instrumental ge...
Chapter 4
Figure 4.1. Organizational ecosystem of home care and support services. For a co...
Figure 4.2. Modeling the relational care system in home health care. For a color...
Figure 4.3.
Status of PAACO-Globule deployment by Departments
Figure 4.4.
Choice of the level of confidentiality with PAACO-Globule
Figure 4.5.
Evolution of PAACO-Globule in Aquitaine
Figure 4.6. Status of interprofessional cooperation relationships. For a color v...
Figure 4.7. Example of notes from the logbook. For a color version of this figur...
Figure 4.8. Example of notes from Escale Santé staff. For a color version of thi...
Chapter 5
Figure 5.1. Social support registry French lexicon. For a color version of this ...
Chapter 7
Figure 7.1. Example of an expert profile according to its modes of legitimation:...
Figure 7.2. Example of an expert’s profile according to his or her modes of legi...
Chapter 8
Figure 8.1. Graph of the number of users versus the number of messages posted. F...
Figure 8.2. Example of thematic dispersion for two users. For a color version of...
Figure 8.3. Examples of word clouds generated for two users. For a color version...
List of Tables
Chapter 1
Table 1.1.
Paradoxical organizational logic and practices [PER 03]
Chapter 2
Table 2.1.
Population and questionnaire responses
Chapter 4
Table 4.1. Conceptual specifications of the care relationship according to ethic...
Table 4.2.
Data processing plan
Chapter 6
Table 6.1.
Place and role of testimonials in health information
7
Chapter 7
Table 7.1. Types of expertise, origins, spaces of expression and main modes of l...
Guide
Cover
Table of Contents
Title Page
Copyright
Preface: Info-communication Perspectives on Digital Health Communication
Acknowledgments
Author Biographies
Introduction: Updating Issues of Digital Health Communication
Begin Reading
List of Authors
Index
Other titles from iSTE in Science, Society and New Technologies
End User License Agreement
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Technological Prospects and Social Applications Set
coordinated byBruno Salgues
Volume 5
Digital Health Communications
Edited by
Benoit Cordelier
Olivier Galibert
First published 2021 in Great Britain and the United States by ISTE Ltd and John Wiley & Sons, Inc.
Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms and licenses issued by the CLA. Enquiries concerning reproduction outside these terms should be sent to the publishers at the undermentioned address:
ISTE Ltd
27-37 St George’s Road
London SW19 4EU
UK
www.iste.co.uk
John Wiley & Sons, Inc.
111 River Street
Hoboken, NJ 07030
USA
www.wiley.com
© ISTE Ltd 2021
The rights of Benoit Cordelier and Olivier Galibert to be identified as the authors of this work have been asserted by them in accordance with the Copyright, Designs and Patents Act 1988.
Library of Congress Control Number: 2021934249
British Library Cataloguing-in-Publication Data
A CIP record for this book is available from the British Library
ISBN 978-1-78630-468-1
PrefaceInfo-communication Perspectives on Digital Health Communication
As we finalize this collective work, we cannot disregard the health context that is highlighted by the very content of the book. We are confined for public health reasons. Each of us on one side of the Atlantic, like half of the world’s population on this day in April 2020, must face the health, social and emotional consequences of the pandemic caused by Covid-19.
We feel the fear of the dangers of disease and the necessary protection of ourselves and our people. We are subjected to a flood of information on the spread of the epidemic in traditional media, as well as on social media, that worries us and sometimes freezes us in fear. We keep in touch with our loved ones via digital tools hardly used by most until now, but which immediately become indispensable to maintain family, friendly and professional links, and at the same time, we are obliged to ensure pedagogical continuity for our students from a distance via digital tools. As actors of these new knowledge mediations, we do so twice over because we must also support our children as they attend their distance courses and evaluations that continue as best as possible during this period.
As you will have understood by reading these lines, the unprecedented health crisis we are experiencing today makes the general issue of the work you are holding in your hands (or reading on a screen) even more topical: how does digital technology contribute to changes in health information and communication? In other words, what are the contemporary challenges of digital communication in health?
Box P.1.Digital communication in terms of health or digital health communication?
The World Health Organization (WHO) defined health in 1946 as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” [OMS 46].
The adjective health refers to activities and facilities related to health and hygiene. It takes on a more operational connotation and thus evokes the challenges of public health protection.
In France, a distinction is even made between the social and medico-social sectors – defined by Laws 75-534 for the disabled and 75-535 for social and medico-social institutions, then replaced respectively by Laws 2005-102 and 2002-2 – and the health sector – with Laws 2002-303 on patients’ rights and the quality of the health system and 2004-806 for public health policy.
In Quebec, the purpose of Chapter s-2.2 of the Public Health Act is to protect the health of the population and to establish conditions favorable to the maintenance and improvement of the state of health and well-being of the population in general. It is this text that gives the government the authority to declare a state of health emergency, as is the case for the Covid-19 pandemic.
The adjective “sanitaire” in French (literally meaning “sanitary” but translated as “health” used adjectivally in English) therefore has a hygienic and operational connotation that may seem more restrictive than the notion of “health”. The tensions surrounding this notion are not new: Guillotin and La Rochefoucault-Liancourt were already fighting in 1790 over the absorption of a begging committee by the health committee [EVI 02]. It may be difficult to distinguish between them and we can see that they are part of a continuum between abstraction and concrete practices. For this reason, and without precluding us from continuing our reflections and conceptualization efforts, we use expressions using these words interchangeably here.
Covid-19, caused by a coronavirus that has resulted in a global epidemic and an unprecedented wave of hospitalizations for patients with severe acute respiratory syndrome (SARS), is acting as a revealing, even accelerating, force for info-communication issues in the healthcare sector. Plunged into the heart of this health crisis, the world’s population is bombarded with journalistic information, as well as strategically targeted communications. In Quebec, during the daily press briefing at 1:00 p.m., François Legault (Premier of Quebec), along with the charismatic Dr. Horacio Arruda (National Director of Public Health) and other members of his cabinet, take stock and give directions for future actions. In France, during the 8 p.m. news, the usual media doctors appear with a myriad of hospital caregivers or epidemiologists who come to testify to the difficulty of coping with the influx of seriously ill patients, the need to remain confined to avoid the spread of an already highly volatile and contagious virus, or the shortage of intensive care beds and protective equipment available to caregivers.
The scientific and institutional expert voice is being solicited as never before, and is relayed or even instrumentalized by political actors in the battle of public opinion being played out in the background. The economic players of the digital society are becoming the universal mediators of a social link that circulates via WhatsApp or TikTok groups. Electronic socialization, which has been completely interwoven into our daily relationships since the massification of global multimedia mobility in the decade 2000–2010, initiated by Steve Jobs and his iPhone in 2008, hegemonically dominates all forms of relationships and information. In this sunny spring, we have resigned ourselves to exchanging and sharing information at a distance, often with humor, about the virus and how to protect ourselves from it: How can we get surgical masks by making them? How can we apply the distancing gestures that protect us from infection? What is the status of tests of promising treatments based on chloroquine or hydroxychloroquine? Are we taking a risk by continuing treatment with cortisone and other anti-inflammatory drugs?
Of course, emotions circulate just as much. Online communities can be formed in a matter of hours, not only within a family or a group of friends, but also within a neighborhood, a street or a building. Just as they serve as a digital foundation or for knowledge sharing between peers, so these communities are inseparable from the gregarious need that drives us: the need to keep in touch with our “local” or “distant” loved ones. Videoconferencing digital platforms are exploding in popularity as we try to maintain our professional activities or reinvent our relationships with family and friends from a distance. Between social, emotional and informational support, digital tools, just like the media of yesteryear, allow us today to create society.
In this spring of 2020, digital communication is everywhere, omnipresent, to the point of obscuring all other channels of mediation. Health issues are central, whether in exchanges on a daily life that reinvented its banality, or on the subject of socio-sanitary issues that were rarely confronted. However, the tensions linked to this massively health-related digital communication have not been swept away – quite the contrary. It would be tempting to give in to a technophilia that was already overwhelming in the past, yet that would be to quickly forget the darker side of the massive use of digital technology.
If we want to return, for example, to the circulation of health information on spaces dedicated to peer-to-peer communication, as all the major generalist social networks are (Twitter, Facebook, Instagram, etc.), the medical profession must face and deny a multitude of fake news stories. Open controversies of a new kind, such as the authorization (by a scientific fringe and a bureaucracy shaken in the temporality of their protocols) of the administration of a treatment not yet approved, are an opportunity for the diffusion in the public space of points of view with no other form of legitimization other than the recognition acquired on the Internet of those who share them.
The broadcasting and digital echo of the debate are part of the new creation of public opinion [CHA 90], which is quick to question any authorized speech. While this phenomenon is not exclusive to the health field, we do see the emergence of lay or amateur expertise [FLI 10]. And what about technological surveillance logics aimed at identifying and preventing, via smartphones, the physical contact of people diagnosed positive for Covid-19 through mobile geolocation applications?
Beyond the “general public” dimension of digital communication in healthcare, medical teams benefit from the creation of true communities of practice [COH 06] that enable them to share crucial knowledge about the disease. However, they are also confronted with the limitations of tools that cannot replace physical interactions, for example, during transmissions between night and day shifts in the hospital environment [GRO 98].
The same is true for local medicine. Although telemedicine allows private practitioners to maintain contact with patients with symptoms of Covid-19, particularly in certain territories already marked by the medical desert syndrome, these healthcare professionals nonetheless miss the accuracy of the diagnosis made possible by the traditional face-to-face consultation.
These healthcare professionals are also faced with the rediscovery of a digital divide that was thought to have been reduced by the quality of broadband telecom services, but these services are in fact still unevenly distributed across territories.
As a result, some rural areas, which have not yet been beneficiaries of fiber optic networks, find themselves penalized since videoconferencing services, necessary for remote consultation, require a very high data rate only possible with the installation of fiber.
P.1. The French and Quebec health systems as a heuristic context for analysis
As we will have understood, the spread of Covid-19 and its consequences, medical, economic, social and cultural, constitutes a pivotal moment in contemporary health information and communication issues in a digital context. It brings to the forefront both the consequences of a massive use of digital tools in medical practice and the no less central issues of increasingly digitalized interactions between patients and caregivers, between patients, and between caregivers.
The scope of health communication is therefore very broad. We can try to circumscribe it provisionally in a general definition. From our point of view, health communication encompasses all of the processes involved in creating, disseminating, sharing and evaluating information on health topics that are likely to affect the health of the public, or that are communicated in the organizational context of institutions or professional networks dedicated to health. Digital health communication concerns all health communication phenomena conveyed by sociotechnical information and communication dispositives (SICDs).
It is clear that in 2020, it is deeply illusory to want to dissociate “digital health communication” from a hypothetical “non-digital health communication”. As in all fields of human activity, digital communication is embedded in all forms of interaction and relationships. Nevertheless, it still seems relevant to us to question the specifically digital part of health info-communication issues. Quite simply because we have not yet exhausted our understanding of the consequences of digitization on all of our activities, and particularly in the health sector.
The experience of the Covid-19 health crisis makes this analytical process all the more important since a multitude of supporting discourses are opposed to a no less significant volume of analyses pointing out all the risks inherent in the socio-technical ecosystem. On the one hand, we can identify prescription discourses aimed at the rapid adoption of digital tools facilitating access to information, reducing opportunities for interaction with caregivers or other patients ready to discuss their care pathway, enabling remote medical monitoring or improving the coordination of the action of medical teams [DUP 10, VAL 15]. On the other hand, we can also observe alarmist points of view that indicate the harmful effects of the massive implementation of digital information and communication technologies (DICTs) in terms of the remote monitoring of inhabitants, the development of teleworking that alienates people under the guise of economic optimization, or the future dehumanization of patient care by seeking to digitally compensate for the problem of territorial inequalities in access to care.
The positioning of information and communication sciences in the concert of human and social sciences must allow for relevant, current and heuristic clarifications of approaches to understanding the mechanisms of insertion and, we should also say, of the social insemination of ICT.
Our perspective is anti-deterministic. However, it can well be about the very mechanisms of a deterministic technological thinking at work among critics and promoters of an ever more digital society, increasing or even preserving humanity for some, enslaving it for others. It is at the heart of this tension that the info-communication processes are deployed, between cure and care, which we propose to study in this book. The research carried out for more than 30 years on the specific stakes of the social insertion of DICTs has made it possible to build an active community of researchers who, between the sociology of uses [JAU 11, JOU 00, PER 89], the digital communication of organizations [DUR 09, LEP 02], the new creative and digital industries [BOU 12, MIE 17], the semiotics or semiology of the digital world [BAD 15, BON 13, PIG 09], design [CAR 17b, LEL 02], changes in public debate, the digital mediation of knowledge [JAC 02, MOE 10, PER 12, PER 14] and the challenges of electronic socialization [GAL 05, PRO 00, PRO 06], provide a solid foundation for the identification, analysis and understanding of a digital health society in the making.
The scientific work that gives substance to this approach is located territorially. We question identifiable institutional contexts that, though they are limited to France and Quebec, bring to the forefront issues which, we believe, common to all communities involved in the digitization of health care. However, the health culture is not the same in Canada and France. For example, it is very much marked by the centralizing power of the State in France, and it seems much more imbued with the commitment of healthcare actors in Quebec. The various works presented here will be concerned with showing this context, which seems to us to be rich in similarities, as well as in differences, if only because of their distinct reactions to the logic of the new public management [DEG 14].
Indeed, the idea that corporate management can be applied to all forms of organizations, especially those focused on the common good, such as health organizations, now conditions all activities in the health sector. The logic of efficiency, whose limits are becoming apparent in this period of Covid-19 crisis (e.g. a lack of beds in intensive care units because they are not useful in normal times, a lack of nursing staff because of a decrease in the number of personnel owing to the neoliberal dogma of cost reduction, and a lack of masks, a consequence of the precepts of lean management [BOU 15b], etc.), is predominant in all countries, but with forms of acceptance or resistance that may prove to be different.
It is, of course, the case with regard to the French and Quebec cultural contexts which we focus on here. Similarly, for these two territories, acceptance and resistance to the digitization of care may be similar in many respects, but more specific in others. It seems certain to us, however, that Quebec society and French society can show some form of relevance to reflections on a global health system in crisis; this is a health system in which the care actors, in a form of consensus, question liberal strategic-economic precepts that until now seemed to be the fruit of “vulgar” managerial common sense, despite the exhaustion and repeated alerts of the care workers, particularly in France where half of the emergency services were on strike in September 2019 to demand more resources.
P.2. Information and communication sciences: a theoretical corpus and methodologies for understanding digital communication in healthcare
Without claiming to be exhaustive here, we wish to propose a significant state of the art of digital communication approaches in health led by researchers related or connected to information and communication sciences (ICS).
Numerous works are now available in many HSS disciplines dealing with the analysis of info-communication processes that cross the field of health. In sociology, psycho-sociology, economics and management sciences, researchers are studying the sociotechnical changes that are taking place and that are effective in the mediation between actors and organizations involved in health care. Nevertheless, it seems to us that ICS, because of the elements put forward previously, constitute a very relevant and already rich interdisciplinary base. Indeed, the work presented in this book can draw on a set of empirically proven hypotheses and theories, which are constantly being updated, concerning all the issues of the digital society.
Moreover, the interest in understanding the strategies of actors, which is a key feature of ICS, allows us to take into account macro-social tensions, be they economic or cultural, by linking them, at a meso-level, to individual action logics. In addition, the proximity of ICS research to empirical reality, validated in particular by the numerous partnership research contracts between our laboratories and institutions/organizations in the health sector, testifies to a dynamism in the renewal of problems directly related to the field.
In the same way, the methodological apparatus mobilized can be nourished by various approaches, articulated according to the interdisciplinary affiliations claimed by researchers concerned with not locking their questioning into an overly rigid conceptual straitjacket. As a result, cross methodologies, mainly articulating qualitative approaches in a comprehensive perspective, are deployed. This will be a question of finely perceiving the logics of actions via semi-directed interviews, as well as of strongly mobilizing ethnographic approaches of the Internet [JOU 13]; the semio-pragmatic analysis of site design can also be used [ODI 11], as can the analysis of online discourse [MAR 16].
P.3. For a critical approach to digital health communication
While we do not wish to further evoke here the multiplicity of empirical approaches practiced in digital communication, it seems to us necessary to mention the main currents of communicational thinking in health. We believe that all of them are defined by a critical distance towards supporting discourses or organizational projects that aim to make ICTs the all-encompassing solutions to most, if not all, of the health sector problems. This critical distance, the result of observations made as closely as possible to the uses and info-communication practices of patients and caregivers, never precludes an increase in generality involving a systemic questioning of the dominant neoliberal perspectives.
It is in this perspective that Dominique Carré and Jean-Guy Lacroix, in a Franco-Quebec approach that is very similar to ours today, aimed to understand in a general and global way the societal stakes of the computerization of care. Not exclusively focused on organizational issues, their approaches jointly see the beginnings of a mutation of expertise and a technician ideology promoting the empowerment of a patient who is supposed to become an actor of his or her care… online. It is then a question of evaluating the effects of the “computer transplant” [CAR 01b] in a constantly changing health sector, between renewed regulations, major industrial and economic stakes and the imposition of new rationalizing managerial standards. The objective of the two authors is clear: to show the role of communicating information technology in the dual process of merchandizing and managerialization underlying the “outpatient shift”; the latter aiming to reduce the overall costs of hospital care considered too expensive.
The research conducted or highlighted by Carré and Lacroix questions the promotion of sociotechnical empowerment aimed at encouraging patients to co-produce the care they receive by automating part of the medical follow-up [CAR 01a]. They prefigure all or part of the work that we now refer to as “digital communication in health”. Since then, these perspectives have not only been largely updated, but also constitute a particularly lively research subject within the ICS. As a result of the pioneering approach of these two authors, health studies will attract the interest of a growing number of ICS researchers, providing empirical support for the major theoretical currents in our discipline. This work repeatedly questions the issues of the digitalization of today; the field of healthcare is a central terrain for exploring the developments of the digital society. We propose a synthetic panorama of this field in the following sections.
P.4. Digital health communication in the workplace
As an extension of the issues defined by Carré and Lacroix, work on digital communication for health organizations is very much alive in the French-speaking ICS community. It highlights the limits of information technology in health care, obviously at the level of institutions, as well as at the level of so-called “urban” professional practices. In particular, following the initial work claiming a crossover between health and organizational communication [GRO 99], and short of the work aiming to cover the entire problematic field, where computerization is supported by an increasingly commercial logic, as well as an industrial one [SAL 16], the work carried out in digital communication of organizations is focused on more limited areas.
From a critical perspective, they highlight the rationalization processes brought about by the application of neo-management in healthcare institutions [BAZ 08, BON 05] and the increasing computerization of patient care processes by healthcare professionals. In a neoliberal context marked by the disengagement of the State and the need to reduce costs, the implementation of the personalized medical record is an emblematic example [MAY 12]. Rationalization processes, aimed at making healthcare ever more efficient, are then nourished by the monitoring and control possibilities offered by digital technologies. The same applies to services based on quantified self or digital self-measurement, which are becoming widespread via smartphone applications. These applications encourage Internet or mobile users to share their personal health data (e.g. the number of calories they spend on their morning jog) with their online community. The aim is to evaluate a positive or even negative physiological progression or evolution, such as weight gain. This measurement of physiological performance, calibrated to that of other members of the community [ARR 13], reflects a form of cybernetic self-optimization, which is certainly fun, but which reminds us of the automation logic already identified by Dominique Carré in 2001. Moreover, these practices, conveyed by industrial players in the collaborative web economy [BOU 10], reinforce the need to establish and respect a “data ethic”. Indeed, what about the marketing exploitation of individual information concerning intimacy? What can be said about the possible risks of using these data [BER 14], for example, by banking institutions looking for reliable information to establish the insurance rate of a mortgage loan?
On another level, following in particular the above-mentioned work of Anne Mayère, recent research points to tinkering and other misuse of the system by healthcare personnel who refuse to accept the increased bureaucracy induced by the traceability of acts and procedures; traceability that is essentially digital (“paperless” logic) and strongly linked to the implementation of the famous electronic personal medical record [COR 13, GRA 17]. From the same perspective, Luc Bonneville and Sylvie Grosjean attempt to explore digital communication in health as the product of a paradoxical opposition between two social logics: the emancipatory logic of promoting a professional practice free of low added value tasks, in favor of time spent with the patient and/or improving care (“clinical reason”), and the reifying logic of a computerization ratio that standardizes professional practices with a permanent concern for efficiency (“economic reason”), leaving caregivers with no other choice than to bypass them with “tinkered” substitution devices [BON 07].
In the wake of questions concerning the meso info-communication approach of health organizations, work is focusing more specifically on groups or categories of healthcare professionals affected by digital technology, or even emerging through digital mediations. How does digital communication accompany the profound changes in the organization of care in healthcare institutions, outside of hospitals and other clinics, or in networks trying to optimize interprofessional coordination in territories with unequal health resources [BOU 03]? The aim here is to show the emergence of new forms of professionalism based on the “scientific” and “operational” mediation of medical knowledge. As a result, new digital healthcare professions are emerging, using the Internet to create communities of patients led either by healthcare professionals switching to community management or by community managers trained in the specificities, particularly ethical, of digital communication in health [GAL 14].
P.5. Digital communication in health: between strategic communication, public space and empowerment
As a result, between understanding the uses, non-uses and misuses of ICT in the workplace, support for the managerial rationalization of healthcare teams and new professionalization, research into digital communications in healthcare organizations provides an original insight into the challenges of the sector. However, thinking about persuasive digital communication produced by healthcare organizations and professionals cannot be limited to communication at work.
Emerging approaches are also questioning the communication strategies implemented by institutions, independently of the communication of prevention authorities. In an info-communication environment marked by a form of mistrust, or even distrust, of the institutional discourse [PAR 15], this is a question of providing the clearest possible information to make the patient a (convinced) stakeholder in the quality of care. Although this information is massively transmitted via the Internet, public hospitals, particularly in France, are constrained by data security standards not to develop the “communication” function in organizational charts. This results in the dissemination of very practical, not to say administrative, top-down information, which cannot compete with participative and collaborative general public health information systems, such as Doctissimo. This strategic approach to communication in public health establishments [AMB 18] highlights the role of the Internet in the construction of true “hospital brands” [MED 11]. At the edge of the digital communication of organizations, this is indeed a more rooted form of digital public health communication.
An important part of the digital health communication work carried out in ICS is questioning online public communication. In a dominant paradigm of promoting health democracy and the empowerment of a patient who must become an actor in his or her care, the research conducted here attempts to analyze the different communication strategies orchestrated by public authorities towards the general public. The Internet then feeds the imagination of a recomposed public space in which the patient and his or her caregivers ideally participate in the public health debate and dedicated political decisions. Paradoxically enough, this research shows that the logic of a persuasive public advertising communication, in which the patient is a target to be convinced, is resistant to disappear in favor of a more “collaborative” approach, which is nevertheless desired. In a perspective marked by health promotion, despite the objective of going beyond “traditional” communication strategies, public authorities often consider that
“the other” is not an enigma to be deciphered or discovered, but a stranger who must be convinced so that he will modify or change his attitude. [REN 07]
The same applies to the work of the ComSanté team, which is continuing and diversifying this approach [KIV 09]. This research resonates with other works that highlight attempts at the dialogical adaptation of health institutions, particularly in the face of health crises. In the context of the massification of SICDs specific to the collaborative Web, the controversies arising from these crises are deployed in digital public debate arenas in which the biomedical voice is challenged [OLL 15], or at least discussed, either by Internet users with no particular knowledge of the disease other than experiential knowledge, or by citizens who want to make their voices heard, often critical and discordant, on crisis management.
Digital public health communication continues to be in tension between the strategies of institutional, political and industrial actors and the more informative and community-based logics aimed at emancipating all citizens through knowledge and reasoned and reasonable discussion. Public authorities are forced to completely review their communication policies, giving priority to participatory mechanisms in order to play an active role in a health public space [PAI 07], which must nevertheless be controlled. It is therefore a question for ICS researchers to understand the new modalities of a strategic communication called 2.0 which, under the guise of a health democracy aiming at the participation of all in the improvement of health care, would seek to better orient exchanges in a logic oscillating between political communication and therapeutic education [ROM 10].
The patient-actor becomes the pivot of this new info-communicational strategy. No longer just a passive receiver of public health info-communication campaigns, the patient uses SICDs to participate in the improvement of care, or even to co-create therapeutic innovation. This is how very recent research is studying how the patient is projected at the heart of the creation of e-health solutions [BON 19]. The perspective is perfectly summarized by Marc Lemire. For the Canadian researcher, the use of the Internet immediately implies a proactive approach on the part of the patient. For Lemire,
this attitude differs from passive obedience, an attitude usually attributed to the patient and generally expected in “classic” models of healthcare management. This is the case with the professional model of compliance, which remains widespread in modern healthcare systems. [LEM 09]
However, not all citizens, potential users of health care, are equally equipped to deal with a digital divide that may, in the long term, create real health information disparities. Indeed, as Joëlle Kivits and Sophie Gendarme point out, access to health information no longer seems to be an economic or technological issue, but a question of health literacy, that is, the ability to
understand media content (Rootman, Gordon-El-Bihbety, 2008), an ability that is more important for people with higher levels of education. In this sense, it is a marker of inequality in terms of Internet use, and more generally in terms of health. [KIV 15]
P.6. Digital health communication: the promise of cognitive, social and emotional support
The massification of digital tools is therefore profoundly modifying the informational and communicational practices of patients and their caregivers. These practices seem to be deeply emotional, on the one hand, because of the need to be informed about our pathology or that of a loved one, to better understand the treatment and its side effects, and to grasp the issues at stake in terms of duration or hospital/outpatient care and, on the other hand, because of the need to share our experience and benefit from that of others in the face of a disease.
Work on online patient information modalities is still relevant, systematically reactivating the analysis of tensions and struggles for recognition between knowledge from the experience of care and knowledge from scientific and academic institutions. This is how Viviane Clavier highlights a form of unpreparedness on the part of healthcare professionals in the face of general questions related to current events asked by patients, which lead the specialist into non-specific answers for which she or he will have a form of natural distrust [CLA 19]. This is why health information is consulted, discussed, shared and produced by patients who are concerned about better understanding of the disease, its treatment and, above all, how daily life will be organized around it in the future. Marc Lemire encourages the academic community to consider with great interest this “heterodox knowledge” that resonates or competes with “biomedical knowledge” [LEM 09]. So-called lay knowledge, although it can compete with institutionalized biomedical hegemony in the context of a rebalanced patient–professional care relationship [ACK 10], nonetheless remains a fully-fledged informational and emotional resource for patients. As noted by Pierre Mignot and Dorsaf Omrane in their study of a digital breast cancer prevention dispositive, it is necessary to underline “the persuasive power of ‘knowledge from experience’ in the spaces of online exchanges between the people concerned” [MIG 18].
This new form of experiential expertise [PAG 14] constitutes, at a time when the expert patient is becoming a professional, a central subject of study that we will find in Chapters 7 and 8 of this book. This new cognitive and informational situation is also coupled with a significant social and emotional contribution. If the patient’s presence online is motivated by the need to be informed, it is also an opportunity to forge links with other patients who share a similar reality. This is how online social and emotional support [CHE 19] constitutes the other side of a digital community link whose social logic has yet to be widely explored in the health sector.
P.7. And finally, how can we take care of digital workers?
To conclude this overview of digital communication in health from the point of view of ICS, we would like to reiterate that the digital is itself considered a major health issue, especially at work [BOU 15a]. The idea here could be similar to the perspectives opened up by Bernard Stiegler in his pharmacology of the digital world [STI 06], where online practices are both a remedy for many informational and relational deficiencies, as well as a social poison. The aim here is to understand the psycho-sociological risks linked in particular to what we could define as “connective burn-out”. Some researchers in the field therefore favor the term techno-sociological risks (TSR) such as
all the physical and psychological disorders incurred by an employee, as soon as he or she becomes part of a work situation where information and communication technologies (ICT) play a central role in the accomplishment of his or her missions. [OLI 19]
In the case of a strong dematerialization of the activity in what is commonly today called digital labor [CAR 15], workers, whether they are members of the “pronetariat” according to the terminology of the futurologist Joël de Rosnay [DER 06] or representatives of a hyper-connected management [CAR 17a, CAR 19], suffer from the impossibility of extracting themselves from the platformized digital pressure (e.g. in the case of self-employed workers who have been uberized and enslaved by the uninterrupted process of online orders) or managerial (e.g. the obligation for a community manager to remain on the lookout for posts that negatively affect the image of his or her employer on social networks) [HAS 19].
P.8. Diagnosis and treatment
Digital technology continues to transform our society. It is even helped by a completely organic virus. An unlikely alliance, but how terribly effective. We now leave you with this book and these explorations to continue thinking about the changes that are taking place.
Olivier: “We’ll talk again to write the introduction, but now I have to leave you. I have a call about one of my students’ thesis.”
Benoit: “Excellent. That gives me a few moments to prepare for my videoconference consultation with my proctologist. See you tomorrow!”
Olivier GALIBERTUniversity Burgundy Franche-ComtéBenoit CORDELIERUniversity of Quebec in Montreal (UQAM)
Dijon/Montreal, March 2021
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