Fortunes and Misfortunes of Patients' Associations


The previous section consisted of a description of the Wikipedia encyclopedia, a concrete illustration of a new type of utopia realized thanks to the use of information technology. This new section confronts ideas from May 1968, a period propitious to generous social utopias, to the current evolution of the society. We consider here another concrete illustration that is focused not on the editorial process, as in the case of Wikipedia, but on the evolution of the health system and its organization, in particular on the evolution of patients' associations. It illustrates how solidarity relationships can subsist on the networked society and how some people promote new principles of ethics.

Brief Historical Recall

Less than half a century ago, in almost all western countries as in the socialist world and the developing nations, social roles were well-defined: the teachers were there to teach, the physician to cure, the police to ensure public order, the politicians to govern, etc. During May 1968 in many developed states of Europe and in the United States of America, the young generation contested the legitimacy of the traditional social roles and the genuineness of all kinds of authority. The power of the police, the judges, the doctors, the professors etc. was questioned and debated. In the years that followed, society was traversed by attempts to change the social fabric, in a way that has led to a decrease in the power of traditional authorities.

The development of computer networks originated at the same time, in the late sixties, with ARPANET, which was supported by the DARPA (Defense Advanced Research Projects Agency). There was no direct connection between the militaries who had funded ARPANET and the political activists at the origin of the events of 1968. Nevertheless, a few years later, in the seventies and in the eighties, people, who had been strongly influenced by the ideas of May 1968 in their young age, greatly contributed to the development of computer and network technologies (Lyotard 1984). In particular, some of them initiated the free software movement, the purpose of which was to institute a new economical order based on a social utopia that was characteristic of that period (Turner 2006).

There naturally follows from these considerations a question about the very nature and the origin of the OnLife society, i.e. about of the society that is shaped by the information and communication technologies and, more specifically, by the web: Does the structure of this society correspond to the spirit of free movements of May 1968? Or is it fundamentally different, and why? In favor of the influence of May 1968, one can note that many traditional and well-established institutions seem to lose their credit. The web facilitates retroactions and interactive relations between actors, which prohibits unidirectional influences. For instance, some applications like “rate my professor”[1], “review your lawyer”[2], “rateMDs” (rate Medical Doctors)[3] etc. allow any student, any consumer, any patient etc. to give publicly their own evaluations of authorities. In addition, the development of cheap and light cameras[4] and their coupling to the web enable anyone to capture and to broadcast sensitive information about authorities, for instance about a policeman who beats people on a metro platform, without the mediation of intermediaries, like journalists. As a consequence, state institutions, newspapers, media and authorities tend to loose their exclusive privileges. More generally, the dominant status of the officially stated knowledge may be publicly discredited on networks. All of this might incline us to conclude that the networked society realizes the spirit of May 1968. However, against this thesis, we note that the unbalanced power of the market has never been so important and that social solidarity and public generosity seem to decline.

To try to answer the question relevantly, we explore here the specific question of health maintenance and its recent developments. In particular, we are interested in the social organization of health systems, in the evolutions of the authority of physicians and health industries, and their influences on medical cares.

  • [1]
  • [2] or.
  • [3]
  • [4] As an illustration, one may mention a wearable camera named nemoto™ (, or another name autographer™ ( but there are many others.
< Prev   CONTENTS   Next >