Confidence and Legitimacy in Health Information and Communication

The question of trust is crucial in the field of health. First, because health is indicative of particularly strong issues at the societal, regulatory, institutional or individual levels; secondly, because the boundaries between specialized information validated by legitimate instances and uncommitted information have become permeable; finally, because it appears to be central within relations between actors in the field. In this book, we propose to address the trust in terms of the information and communication phenomena that are at work in the health sector, and to look at the process of building the legitimacy of information in the health sector. health.

• Language: English
• Publisher: Wiley
• Release date: Oct 8, 2018
• ISBN: 9781119549710

Book preview

Preface

This is the first book of a series entitled Health-Information Seeking coordinated by Céline Paganelli and Viviane Clavier. This series is part of the collection Health Engineering and Society proposed by Bruno Salgues. Each book in the series deals with a specific editorial project designed in close collaboration with the directors of the books.

In this book, we propose questioning the notions of trust and legitimacy in information communication in the field of health. It is the result of a call for contributions. The chapters of this book are subjected to a double-blind evaluation of the contributions, first in a summative form and then in full chapter form. Céline Paganelli warmly thanks the following members of the scientific committee:

– Viviane Clavier, MCF HDR in Information and Communication Sciences, Grenoble Alpes University, Gresec;

– Viviane Couzinet, professor of Information and Communication Sciences, Paul Sabatier University, Lerass;

– Mabrouka El Hachani, MCF in Information and Communication Sciences, Lyon-3 University, Elico;

– Joëlle Kivits, MCF, Nancy School of Public Health, Lorraine University;

– Marc Lemire, Ph.D. Institutional Researcher at the Institut national de santé publique du Québec (INSPQ), School of Public Health, University of Montreal;

– Joseph Lévy, Professor, University of Quebec in Montreal;

– Dominique Maurel, Associate Professor, EBSI, Montreal;

– Céline Paganelli, MCF HDR in Information and Communication Sciences, Paul-Valéry Montpellier 3 University, Lerass-Ceric;

– Isabelle Pailliart, professor of Information and Communication Sciences, Grenoble Alpes University, Gresec;

– Bruno Salgues, Director of studies, Institut Mines-Telecom, Paris;

– Anne-Lise Touboul, MCF in Information and Communication Sciences, Lyon-2 University, Elico;

– Lise Verlaet, MCF in Information and Communication Sciences, Paul-Valéry Montpellier 3 University, Lerass-Ceric.

Preface written by Céline PAGANELLI.

Introduction

The question of trust is crucial in the field of health because health is indicative of particularly strong issues, be it societal, regulatory, institutional or individual as well as because the boundaries between specialized information validated by legitimate bodies such as institutions or professionals of the sector and information that has not been validated have become permeable. The final reason is that trust appears to be central within relationships between actors in the field, whether they are professionals, patients, public authorities, companies or health organizations. The issue of trust is most often dealt with from the viewpoint of the relationship between patients and health professionals or between users and their health system [JAU 03, SAO 09].

In this book, we propose a method of addressing trust in terms of information and communication phenomena that are at work in the health sector and consider the process of building the legitimacy of information in the health sector.

The forms of production, editorialization and mediation of specialized information in the field of medicine have undergone a large number of changes in recent years, particularly under the influence of information and communication technologies. These developments have affected the health information sector, considered here as information for the general public, especially through the development of discussion forums and websites for generalists and most often from private players. Specialized medical information, which is part of the field of professional information and intended for industry players (especially health professionals), has also undergone profound changes. Traditionally produced by the public sector or specialized publishers, it has seen the multiplication of production bodies: pharmaceutical laboratories, patient associations, doctors, etc.; information validation circuits, where they exist, have also diversified.

These transformations accompany other developments in the field of medicine. The development of the medical Internet, the setting up of patient files and telemedicine have led us to reexamine the question of confidence in the field of health, whether it is in the relationships between actors, compared to the information found on the Internet, disseminated by institutions or obtained from professionals, or in relationships that are formed with information-communication devices, including medical information systems. Finally, discourses on patient empowerment, whether they come from public authorities or health institutions, lead us to consider this movement by questioning the notions associated with it, such as autonomy, understanding, participation or even trust.

The Trésor de la Langue Française defines trust as the spontaneous or acquired belief in the moral, emotional, professional value … of another person. According to the philosopher Michela Marzano, trust refers to the idea that one can trust someone or something. In particular, she wrote, "the verb confide (from the Latin confidere: cum, with and fidere, proud) means, indeed, that something precious is given to someone, trusting him and thus abandoning yourself to his goodness and his good faith [MAR 10]. Thus, we trust a person or device that we consider reliable based on our own criteria. Confidence also refers to a sense of security: a climate of trust" evoking a situation that appears reassuring. In the presentation of one of the Réseaux editions published in 2001 about trust, Louis Quéré was interested in its other aspects, such as the inter-organizational trust mentioned by Edward Lorenz and the conditions favoring it.

Here, we connect trust and legitimacy by proposing to question the way in which the legitimacy of information is built, particularly in information-communication devices in the field of health. Certifying health information sites by the Health On the Net (HON) Foundation, accredited by the Haute Autorité de Santé (HAS), is an example of the legitimization of health information intended to give reliability that provides guarantees and, therefore, trust to users. However, the conventional criteria of peer evaluation as practiced in the context of scientific publication activity cannot be applied during mass dissemination of medical information, since health professionals cannot respond to a large number of requests. Validation of content is lacking [REN 09]; legitimacy is exercised in the field of information quality, certified or labeled, which can be identified by a logo said to be of quality. In this context, the legitimacy conferred by the attribution of a quality logo appears above all as a guarantee of credibility for site publishers, which does not necessarily result in a higher visitor rate. This raises the question of the criteria used by Internet users to trust health information sites, as well as the question of the different forms of certification put in place by producers of health information services.

Sociology highlights the confidence crisis that has affected medicine and its impact on professional territories [AÏA 94, BRO 94]: an increase or decrease in medical power, leading to a loss of influence of physicians on public policy decisions [HAS 99]; a change in the relationship between physicians and patients due to widespread access to information on the Web; a judicialization of medicine [LAN 04] and, finally, the development of self-medication practices [FAI 12]. This loss of confidence has various consequences for the information practices of patients and health professionals alike, which need to be studied carefully. The motivations that lead players in situations of distrust to use information are questioned here.

This book is composed of 12 chapters and several theoretical reflections, case studies and much feedback considering trust and the process of legitimizing information and communication in the field of health. In these chapters, the issue is addressed either in a professional context, within institutions, in companies and in healthcare organizations, where trust is most often considered in relation to internal information-communication devices, public health policies and actors in the field of health; or in an individual approach, where trust is generally addressed in the context of relationships between citizens and public authorities or medical professions.

Four chapters situate their investigations in a personal and familial context. Confidence is envisioned especially when citizens are asked to inform themselves in order to make a decision related to their health or that of their relatives.

Vaccination is discussed in Chapters 1, 2 and 3, first by Mylène Costes, who questions the information sources that parents use to vaccinate their children; then by Maryline Vivion, who discusses the hesitation of young parents to vaccinate, considering this approach as favoring the development of an informational habitus allowing us to apprehend a large amount of contradictory information on the subject and finally by Ève Dubé and Dominique Gagnon, who specifically address the impact of information sources on decision-making in the event of vaccination.

In Chapter 4, Clément and Denis Dussarps focus on the information-communication practices of parents of autistic children on the Web.

Eight chapters in this book consider the question of trust in a professional and organizational context.

The study presented in Chapter 5, written by Anna Lezon-Rivière and Madjid Ihadjadène, is associated with the French Army and analyzes the relationship between confidence and information practices of flight nurses in emergency situations.

Chapters 6 and 7 focus on trust in the prism of public health and health communication policies. In Chapter 6, Omrane Dorsaf and Pierre Mignot address online communication practices in the face of the confidence crisis in the prevention of breast cancer. Nathalie Verdier, in Chapter 7, analyzes, through the case of music therapy, the role of information activity in the process of building trust between players centered on a care practice that is not well recognized on the public policy scene and in the French health system.

In Chapters 8 and 9, the authors discuss trust between players in the field of health. Pamela Baillette and Michel Mannarini, in Chapter 8, are interested in the interrelations between the players involved in the process of care and processing of information in hospitals, and wonder more specifically about the role played in the matter by internal medicine, in charge of coordinating and integrating care. In Chapter 9, Aurélia Dumas questions the obstacles encountered when establishing a relationship of trust within a health service at work.

Connected health is dealt with in Chapter 10 by Adrian Staii. The author is interested in devices, the uses that are made of them and the political and societal issues they reveal.

Finally, Chapters 11 and 12 propose a reflection on trust in relation to information-communication devices. Géraldine Goulinet-Fité and Didier Paquelin, in Chapter 11, analyze the co-use of an information-communication device among elderly patients, close caregivers and nursing staff, centered around the functions of help, support and assistance inherent in caring at home. In Chapter 12, Roxana Ologeanu and David Morquin study the place of the computerized patient file in doctoral practices and show, in particular, the difficulties in organizing the information contained in the CPF with regard to the very large number of players and their diversity.

References

[AÏA 94] AÏACH P., FASSIN D. (eds), Les métiers de la santé : enjeux de pouvoir et quête de légitimité, Anthropos-Economica, Paris, 1994.

[BIZ 08] BIZOUARN P., Le médecin, le malade et la confiance, Éthique et santé, vol. 5, no. 3, pp. 165–172, 2008.

[BRO 94] BROCLAIN D., La médecine générale en crise, dans AÏACH P., FASSIN D. (dir.), Les métiers de la santé: enjeux de pouvoir et quête de légitimité, pp. 122–160, Anthropos-Economica, Paris, 1994.

[FAI 12] FAINZANG S., L’automédication ou les mirages de l’autonomie, Presses universitaires de France, Paris, 2012.

[HAS 99] HASSENTEUFEL P., Vers le déclin du ‘pouvoir médical’? Un éclairage européen : France, Allemagne, Grande-Bretagne, Pouvoirs, no. 89, pp. 51–64, 1999.

[JAU 03] JAUNAIT A., Comment peut-on être paternaliste ? Confiance et consentement dans la relation médecin-patient, Raisons politiques, no. 11, pp. 59–79, 2003.

[LAN 04] LANSAC J., SABOURAUD M., Les conséquences de la judiciarisation de la médecine sur la pratique médicale, Les Tribunes de la santé, no. 4, pp. 47–56, available at: www.cairn.info/revue-les-tribunes-de-la-sante-2004-4-page-47.htm, 2004.

[MAR 10] MARZANO M., Qu’est-ce que la confiance ?, Études (revue de culture contemporaine), available at: https://www.revue-etudes.com/, January 2010.

[MAU 12] MAUREL D., CHEBBI A., La perception de la confiance informationnelle, Communication et organisation, no. 42, pp. 73–90, 2012.

[QUÉ 01] QUÉRÉ L., Présentation, Réseaux, no. 108, pp. 9–12, 2001.

[REN 09] RENAUD L., CARON BOUCHARD M., Impact d’un site internet dans une campagne de promotion de la santé : le ‘Défi Santé 5/30’, Santé Publique, vol. 21, special-issue no. 2, pp. 89–103, 2009.

[SAO 09] SAOUT C., La crise de confiance dans le système de santé, Les Tribunes de la santé, no. 22, pp. 119–132, 2009.

[SUT 05] SUTTER E., Certification et labellisation : un problème de confiance. Bref panorama de la situation actuelle, Documentaliste-Sciences de l’Information, vol. 42, no. 4, pp. 284–290, 2005.

Introduction written by Céline PAGANELLI.

1

Information Sources on Childhood Immunization

1.1. Introduction

The heterogeneity of health information on the Internet is well established, and it is even growing. Henceforth, medical information (professional) and health information (general public) coexist in complementary uses [ROM 08]. At the same time, over the past 10 years, there has been a shift toward industrialization of health-related information, characterized by a lack of control from both the state and the medical sectors [ROM 08]. In this context, the search for health information is characterized by a predominant use of the medical Internet, the most popular source of information for the French [IPS 10]. However, despite a major increase in the amount of available information, there is a persistent crisis of trust1 among the French regarding the health system due to cyclical and systemic circumstances [SAO 09]. The information systems established by governments are little mobilized, and institutional websites do not provide the reassurance sought by the user [TOU 10]. Trust has been undermined by media coverage of different health issues. In this difficult context, we wanted to understand how parents learn more about vaccinations for their children. On the basis of the example of vaccination, despite the absence of a health scandal, several controversies have emerged and spread widely (e.g. with hepatitis B or H1N1 flu), reinforcing the distrust of the population vis-à-vis pharmaceutical industries and the political world [SAR 12]. Medical progress has the observable counter-effect of an increase in the perception of vaccine risk, which outweighs the perception of the risk of disease [VIÉ 16]. A form of anxiety toward the vaccination act [AMO 13] has developed, reinforced by a context of over-information that tends to complicate the identification of the risks involved in non-vaccination [BAL 07], thus contributing to a decrease in vaccination coverage [DOM 10]. Therefore, the question here is to define the process of informational research and sketch a comprehensible outline of the construction of legitimacy2 or the more reserved attitude that parents adopt toward vaccination information. In other words, what sources are used for information? What are the legitimacy criteria for the information and confidence retained by the parent?

To answer these questions, we propose an analysis in three stages. The first stage will contextualize our study by questioning the trust toward vaccination. This will be followed by an inventory of a studied group’s information health practices. In addition to being complementary to studies already conducted in communication-information, this stage will provide an opportunity to question the criteria that indicate the legitimacy of health information to the parent. What about the information that circulates? We think, in particular, that health information on the Internet, health forums such as Doctissimo, has public support [TOU 08]. We will then focus on informational sources of childhood immunization. The aim is to understand which media reach parents in a relevant way among the multitude of information disseminated by the government through different organizations (the Ministry, centre de protection maternelle infantile [maternal-child protection center] (PMI), Institut national de prévention et d’éducation pour la santé [National Institute for Prevention and Health Education] (INPES), health books, maternity services, information campaigns, etc.). We will also see that the number of parents seeking information on the subject remains low, which is a fact often justified by the trust placed in the medical profession, which is reflected throughout the research. Finally, we will discuss how this trust is built.

1.2. Methodology

The survey was conducted in July and August 2016 in a pediatric practice. We interviewed parents who used a pediatrician and not a general practitioner for the medical monitoring of their children to optimize the rate of participation. This aspect should therefore be taken into account when reading the results.

In practical terms, we welcomed volunteers in a dedicated office space following their consultation, after which the pediatrician asked the parents to participate in a survey with the aim of improving research on the subject of childhood immunization. The parents were also informed that this study was carried out by an outside researcher who had no implication in its realization except that of proposing it.

As researchers, we considered this study in a dual interest: first, it was to think of a tool that would provide answers to initial questions, and it was necessary to design a measurement tool that could be reused on a larger scale to quantitatively confirm the trends revealed during this first exploratory qualitative survey. We therefore opted for a survey at the intersection of the directive interview (oral questionnaire) and the semi-directive interview by including several open questions. We wanted to bring qualitative elements, since there are still a few studies on the understanding of behaviors and sources of information related to vaccination and especially that of children. Studies conducted in France focus mainly on immunization coverage; they are most often carried out in schools through the analysis of health records [GOI 15].

When preparing the questionnaire, we were inspired in part by that developed as part of the VACSATC (Vaccine Safety: Attitudes, Training and Communication) study. Conducted in five European countries in 2009, this study included a survey of more than 6,000 patients to determine their sources of vaccination information and the level of confidence they had in them [MOU 12].

The designed interview grid is organized around four approaches: information-seeking practices related to health, knowledge and representations of vaccination, access to information and information retrieval on immunization and, finally, suggestions of health professionals about it. A total of 52 people were interviewed. The breakdown is as follows: 43 women and eight men, 51 of whom were in the age group of 25––49 years; two people were graduates of the brevet (French diploma of higher education); 12 were high school graduates; 26 were graduates with a higher undergraduate diploma (bac +2/+3); and 12 were college graduates (bac +4). With regard to occupations and socio-professional categories, we counted: one working farmer; three people who were craftsmen, tradesmen and entrepreneurs; five managers and higher intellectual professions; 20 people with intermediate professions; 18 employees; one laborer; and four unemployed. Now, let us review the context of the research.

1.3. Vaccination: a proven trust

1.3.1. Loss of trust in the vaccination act

Trials for health issues are constantly increasing [SAO 09], and the justice system condemns parents who do not adhere to the medical obligations imposed by the legislation3. Under this climate of distrust and the awareness of the growing concerns of the population on this subject, the French Ministry of Health launched an action plan on January 12, 2016, for the renewal of its vaccination policy4 [HUR 16]. In this context, a citizen consultation was set up via the website concertation-vaccination.fr5 [COM 16]. This device reflects the appropriation of this subject by the government with the intention of reassuring the French. For their part, health professionals note that an increasing number of parents find it difficult to decide whether or not to vaccinate their child. This can be due to the disappearance of almost all diseases in Europe for several decades (tetanus, poliomyelitis, diphtheria) and the underestimation of the potential severity of the existing diseases (pertussis, measles, meningitis and mumps). There is a lack of knowledge and research information on these pathologies. Public health campaigns on vaccination are not mentioned among the sources of information used [AMO 13]. Insufficient access to information and lack of trust in both government and pharmaceutical industries create negative attitudes among parents [GUS 05, RAI 03].

1.3.2. The vaccination obligation

In the field of health, the vaccination theme has the specific feature of being one of the few for which the free consent of the patient is not required6. It should be remembered that some vaccines are mandatory as soon as we enter the community. Thus, the free consent intended to favor freedom and reduce the authority of the State [JAU 03] is not applicable on this subject7; it cannot, therefore, be a constituent element of trust in the act. Therefore, in this context, where the vaccination act is legally imposed, can we really speak of trust? The legitimacy of vaccination is not questioned, but it can be thought of as a form of attack on individual liberties, a kind of upset freedom [HAS 99, TAB 09]. In addition to the trust in information sources, the trust attributed especially to health professionals raises questions. This point has already been the subject of various studies in the fields of medicine as well as information and communication sciences or management sciences. It should be noted that the loss of confidence in health professionals has increased the search for online information and more particularly the use of forums such as Doctissimo [TOU 10]. Trust is built thanks to the information provided and the behavior of health personnel [PHA 02]. Regarding the more specific question of vaccination, trust between health professionals and parents is a major factor in influencing parental decisions about vaccines [AMO 13, FOR 07]. Here, more than trust, we think it could be accommodation of a form of forced trust on the part of parents. In the conceptual line of the work of Romeyer [ROM 08, ROM 12], our first hypothesis lies in the idea that parents refer more extensively to health information via the Internet, but give confidence and legitimacy to medical information, especially when it is provided directly by a health professional. From this follows our second hypothesis, according to which reliance is fundamental to the construction of a feeling of trust from the parent about the vaccination act. Reliance will be understood here as allowing the maintenance of trust in care through the relationship. We will try to verify the findings established in a hospital environment, according to which trust takes shape during the relationship and by the relationship [PHA 02].

1.4. Health and legitimacy information retrieval: an ambivalent stance

1.4.1. Health information research practices

Health information retrieval is a common practice. The 46 parents interviewed had already personally searched for information related to health. Research via the Internet is widely acclaimed (39 parents) with a significant use of forums in almost every other case. Doctissimo was largely in the lead (referred two times out of three during the consultation of forums). How can these research practices be explained beyond the need for exchanges and opinions from the public sphere [ROM 08, ROM 12]?

The criteria for the choice of sources, mentioned by the parents during research in connection with health, reveal that a majority does not have specific habits or research criteria, which was already the case at the beginning of the medical Internet [NAB 02]. They rely on the first pages displayed on the results list, essentially favoring the speed and practicality of the search tool. This result confirms the correlation too often established between the accessibility of information sources and the perception of the quality of information [MAU 12]. In more than one case out of two, there is no real search strategy or even selective criteria: 11 parents admitted to having no criteria and 17 preferred to rely directly on the first results of the search engine used (Google was the only search engine used). The prevalence of using Google in health information retrieval is not new [REN 07], and confirmation is found here.

The professional or official nature of the source was stated as a selective criterion by only seven parents. However, the professional or official aspect of the website is invoked as a pledge of the quality of the information found, a reassuring element in the face of a health information context that is considered stressful and frightening: I look at the source, if it’s something from the Ministry, I tell myself that they don’t speak rubbish. I hope, because with all the information that there is, one is never sure. On social networks, there is a lot of stuff that circulates like that, such as some medicines being carcinogenic, at first it’s scary to read (Interview 15). The other reasons given relate to the ease of use of the site as well as sources providing testimonials and notices, which is mainly the case for forums. There are several reasons for parents using Doctissimo for their information retrieval. First, because this site appears frequently in the first results of a search via Google, its referencing is one of the first explanations of its success as well as its ease of use and the possibility of quickly obtaining a first level of accessible information. It should be remembered that this site has always been the subject of excellent referencing [REN 07]. Another element, its name using a prefix that is very evocative of the medical environment, tends, at least at first glance, to reassure the parent in search of health information: Doctissimo, it must have been one of the first forums and then its name inspires confidence even if you should not believe everything you read (Interview 51). Doctissimo, before, I had the impression that it was more serious because of the site name (Interview 31). Doctissimo is quick at obtaining the first pieces of information, after, of course, I consult a doctor (Interview 37). We perceive there to be a certain distance from this source. It is spontaneously alluded to as having been used, but only in earlier periods, as if the parent acknowledged having carried out an irrelevant research practice: We look without taking the information, it is not a Bible (Interview 12). I consulted Doctissimo but it’s so unreliable that I don’t use it very much (Interview 31). But now I do not look because it will worry me (Interview 42). I have given up with forums because they do not suit me very much as a form of information (Interview 25). When they are not mobilized as a source of information, forums do not have a good reputation in terms of reliability: I avoid forums. I do not look at forums, I feel that all of them are nuts. It’s exaggerated sometimes, it’s scary, often it goes wrong (Interview 23). Forums are thought of in opposition to professional information; the individual aspect of the discourse sometimes leads to patient anxiety: Forums are always bad, I avoid them (Interview 23). I have less confidence in forums as it is Mr. or Mrs. Everyone who gives his or her opinion (Interview 24). On forums, there is everything. People put everything and anything, specialized sites are more serious, it is medical information and not everything else" (Interview 43). Followed by forums, specialized health sites represent just more than 28% of the sources consulted online. However, parents have few memories of the sites in question. The finding is similar for the use of newspapers that are general or specialized (popularized for the general public). The magazines attract more attention, and titles are simply mentioned: Top Santé, Santé Magazine, Science and Vie, etc.

It should be noted that online health information for parents does not appear to be reliable, as sources are difficult to identify. Several studies revealed that the multiplicity of professional interventions is not necessarily a guarantee of quality [BAN 16]. We note that although consultation via the Internet remains the first reflex for many parents, it is not the only place for information retrieval. What they find is often confronted, a posteriori, with the opinion of a professional: I will look on the Internet but I know that it is the doctor who will have the last word (Interview 5). I type on Google and mainly I go on Doctissimo, I look for minor injuries or I’ll see the pediatrician (Interview 47). The questioning of the health professional appears important for the parent, but it is only seen as a secondary step. This is evidenced by the low rate