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The Shattering of Institutions

As already mentioned, the patient's associations take advantage of the web to increase their influence and to disseminate information to their participants. Since the web allows the direct mobilization of the people, it certainly leads patient's association to increase their influence. This is consistent with the idea that traditional institutions, like medical authorities, now need to share their influence with new actors. In the case of patients' organizations, it means that people, affected by the same disease, can now be connected throughout the web and exert a strong influence, while in the past, they would have remained isolated.

Nevertheless, with the development of the web and, in particular, with the participative web, new phenomena happen that make the official status of both patients' and physicians' organizations more difficult.

To understand the current situation, let us recall that, as previously said, as they grow up, the patients' organizations are moving away from patients' interests, towards their own interest, that is to increase their influence. Therefore, individual patients are less and less motivated by these organizations. In addition, they now become able to get information by themselves, throughout the web, and to get in touch directly, through social networks, with other people that are affected by the same disease, with whom they can easily share their experiences. As a consequence, we observe that many patients leave patients' organizations. Paradoxically, these last are always official representatives of patients in public negotiations, although many patients are not affiliated. In other words, the patients' organizations that have become progressively recognized as official institutions shatter under the effect of the Internet that allows patients to connect and interact each other, without their mediation.

In parallel, some physicians, who are not well recognized by the official bodies of their profession, have taken advantage of the web to constitute themselves as advice givers. They promote, via medicine 2.06, new approaches of medicine that allow patients themselves to take charge, by being informed about their disease and possible therapies, and by adapting their treatment to their needs, according to their own knowledge and personal choices. Without going into the details of this new medical practice, which include self-medication, i.e. the process of prescribing treatment oneself, note that it is very often opposed to institutional medicine, while meeting the needs of patients who are seeking for information on the web. Besides, it is noteworthy that today, because of access to scientific knowledge through the Internet, many patients affected by chronic diseases have a better knowledge of their pathology and of the state of the art in the care of their condition than their own medical practitioner.

It follows from this that the body of physicians, which had been forced to negotiate with different actors, after having dominated alone the whole health system for a long time, is now burst in the same way as patients' organizations. These phenomena correspond to recent, unexpected and unpredictable social change. This unpredictability renders it difficult to answer our initial question, which concerned the parallel between the recent evolution of the OnLife society and the utopia of May 1968. On the one hand, it is certain that information technologies have deeply changed society and have contributed to destroy the privileges of the old institutions like those of medical academies; on the other hand, it's not obvious that the current evolution truly corresponds the ideals of May 1968.

In conclusion, let us consider the current configuration where isolated patients are seeking information about their disease on the web, while some physicians disseminate information by themselves, without referring to the knowledge of best specialists of their domain. The two parts are obviously complementary. However, it may then happen that erroneous knowledge circulates, while authorities, even when they give correct knowledge, are discredited. That's what happened 2 years ago, when many general practitioners were opposed to the public vaccination proposed by the French government, because they where not involved in this plan. They then disseminated misleading knowledge about the danger of the vaccination through the web (Dupagne 2010), with the aim to provoke the failure of the government plan. It fast became very popular; for instance, one of these papers has been downloaded more than 1.5 million times. Following this, the public vaccination plan proposed by the government completely failed because the population did not accepted it. It is certain that these general practitioners played a role in this failure.

This illustrates the power of the Internet and the way it changes state policy, that is, in our case, health policy. This also shows how the Internet affects the role of authorities, in particular scientific authorities. Lastly, this provides evidence of the crucial need for networked society, where institutions and organizations tend to collapse, of an epistemic responsibility like the one that is developed by Judith Simon, to ethically condemn the dissemination of wrong knowledge, as it was the case in the case above.

 
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