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Health and Digital Technology: Reflexive Feedback on Some Works

Chapter written by Hélène ROMEYER.

1.1. Introduction

Working for 15 years on the theme of health from an info-communication perspective, I have been led to study its development on the Internet. We have the opportunity here to look back on this work, on our practices and, beyond that, on our position as researchers in the information and communication sciences (ICS). It is therefore a question of reflecting on the processes used to study the development of e-health and on the concepts mobilized to analyze the results. We will start here by observing the massive presence of e-health; a presence marked by exponential development, a plurality of actors, materials and information. What can an ICS researcher bring to the study of the current state of e-health?

This object, online health, opens the study both on a complex professional field, that of health, a sector marked by its "public" characteristic, and on a sector, that of digital technology, which is still under development, with strong economic stakes and promoted by a number of prophetic speeches. The aim here is to question and sometimes deconstruct a number of ideas or processes about digital technology when applied to health.

First, the framework will be broadened: indeed, the characteristics and issues related to health are such that the situation of online health today cannot be explained solely through digitization. The first element to be

deconstructed, therefore, is the idea of a revolution brought about by digital technology. Our first part will show that, in reality, the situation is much more the heir of a long history of political interventionism with important consequences on information. Then, the multiple and high stakes of this situation will lead us to raise the necessity for the researcher to master the digital economy, the functioning of the information and communication industries or the technical processes of the platforms. Finally, if health is developing online it is because it has its users/consumers and therefore there is a use to be analyzed. First of all, the study of these new uses shows a confidence and legitimacy maintained by doctors and then the emergence of new forms of expression. These two elements lead the researcher to deconstruct a certain number of fears about the development of e-health, particularly towards doctors, and to question the real motivations and objectives of Internet users.

1.2. Voluntary changes over the last 50 years

Having worked for several years studying the field of health from an ICS perspective, the observation of a plethora of online information and a dominant discourse on the digital world changing the doctor/patient relationship was relatively quick to emerge. It is, above all, the desire to verify and qualify this phenomenon that has led us to analyze online health. However, once this is established, conducting research on health and the Internet has its pitfalls. Indeed, much work has been carried out by researchers who are primarily interested in the digital world but who are insufficiently familiar with the field of health. This is a nuisance because this situation leads to an attempt to explain phenomena specific to the field of health using digital logic. While the latter obviously have an impact on health, this sector is so specific and complex that the reverse is also true. To ignore it is to be partial in its approach. It is therefore necessary to have an in-depth knowledge of this field, its actors and its characteristics to avoid preconceived ideas or overly rapid assertions. Thus, it is this knowledge of the health professional field that can make it possible to affirm that, in part, the situation of e-health can be explained by a split between medical information and health information, itself the result of nearly 30 years of voluntarist public policies seeking to control medical information only, i.e. that of health professionals. The anarchic situation of e-health is largely due to State action and not to any digital "revolution" (from the Internet to open data).

1.2.1. An old but partial political desire

The first difficulty was therefore that of not falling into the dominant discourse of the digital revolution and not falling into the disruptive analysis of digital development in this sector. A researcher is always marked by his/her training. Ours was first constructed in history, which gave us an appetite for continuums rather than revolutions. In fact, when applied to health and the digital world, this makes it possible to replace the technical and political logics: the digitization of health thus follows its computerization under the effect of rationalization policies aimed essentially at controlling costs. Looking back over the history of these developments makes it possible to start again from the specificities of health in France, namely its public nature (in the regalian sense of the term) and the scientific qualification of its information. In doing so, the digitization of health is part of a continuum of proactive public policies.

At the same time, the consumer Internet is developing at a time when the professional health sector is being restructured by various public policies [CAR 02, CON 03]. Faced with the failure of financial control led by doctors themselves, computerization and rationalization of the health sector became reform tools in the 1990s. The chronology of the successive transformations of the health system1 suggests a long-term movement towards the computerization of both medical and managerial data. The movement to reform the public health system corresponds chronologically to the development of digital information and communication technologies, particularly the Internet. The Programme d'Action Gouvernemental (French Government Action Program) for the Information Society (PAGSI), adopted in 1998, clearly indicated that the modernization of information systems in the health and social sector is a priority with a view to "preparing France's entry into the information society" [CAR 00, p. 20]. However, it should be recalled that computerization comprises two essential phases: first, the digitization of information, i.e. the advent of the computer, and second, the extension of digitization to the transport of information, i.e. communication. Additionally, while, in the field of health, the French State has taken charge of and controlled the digitization of information, it has not made the same effort in transporting the information and has to some extent left such exercise to private operators for professional information and to content industries for consumer information. "It is precisely the digitization of information transport that makes it possible to realize the potential for socio-economic transformation that computerization contains in its seed" [RAL 06, p. 146].

The implementation of this system for the circulation of information from medical acts is indicative of a new form of industrialization of the health sector: the digitization of medical data, medical acts and their reports, facilitates the establishment of databases and benchmarking on performance criteria. However, these regulations only affect specialized professional information, not information for the general public. Under the action of public health policies (essentially for accounting purposes), digitization and industrialization of this professional field is therefore taking place.

Having only targeted professionals, a first division is thus established between medical and professional information and health information for the general public. The legislator focused on professional information because its sole objective was to control healthcare spending and thus neglected information for the general public. Private actors, having glimpsed the economic potential of the e-health sector, have taken advantage of this "oversight" to develop tools. It should be noted that the latter, not being interested in medical information or patient health data, are not required to comply with the French legislative framework for medical information. Moreover, as they are not doctors, they are not subject to the supervision of the French Council of Order. As a result, the trend towards opening up to private actors, initiated by the health system reform, is increasing with the development of e-health. What was previously a public and scientific prerogative becomes unregulated and uncontrolled information. However, the evolution has not been limited to changes in the organization of work: it is the development of the use of information and communication techniques for and by professionals, and for and by patients, which is taking hold on a permanent basis. It is thus the only profession that has been forced by the legislator to computerize.

Ultimately, an unprecedented "explosion" of medical and health databases and information is occurring. All this data and information is now accessible to everyone, all the time, as long as you have an Internet connection. Indeed, during this rationalization effort, the network of networks has developed and, thanks to several high-profile political-legal cases and widely publicized militant actions, health issues have gained public space: contaminated blood, asbestos, the "mad cow" crisis, the Distilbene affair, H1N1, etc. [ROM 10]. The emergence of health issues, public action for rationalization and media coverage have thus multiplied the discourse and therefore the...