As an introduction to this question, let us consider the work a famous essayist of the seventies, Ivan Illich, who was representative of the state of the opinion during this period. He wrote many controversial books on very different topics; for instance, he brought into question the role of public education and the school (Illich 1971), the benefits of technology (Illich 1974a, 1978a, 1995), the necessity to work in (Illich 1978a, 1978b), etc. He has also denigrated the medical institution in a famous book entitled “Medical Nemesis” (Illich 1974b) where he denounced the omnipotence of medical knowledge, which was quite unusual at this time. More precisely, he said that most of the successes of which the physicians prevailed in the second half of the nineteenth and in the twentieth century were illusory, because they were not really due to modern medicine, but to social progresses, to hygiene and to the evolution of the standard of life. In contrast, he blamed the medical authorities who, according to him, were not only responsible for the induction of iatrogenic diseases, i.e. of diseases that result from treatments or therapies, but also of human engineering, which has led to what he called a social “iatrogenesis”, i.e. to the development of a social life and of an economy under medical control and under the domination of the health industry. In other words, he accused the medical body of not taking into account the real needs of patients, but only their own interests.
Ivan Illich proposed a few solutions to make the social organization of health more health-serving than industry-serving. Among them, he supported the recognition of many health professions, like herbalists, masseurs or yoga instructors, against whom he called the “Professional Mafia” of physicians. He also recommended the promotion of health maintenance rather than sick-care and payment with a fixed amount per capita rather than a fee-for-service. But, the most interesting suggestion for us here was to stimulate a patient-oriented medicine, rather than a milieu-centered medicine. He then encouraged patients to organize groups for exchanging information about their diseases and how to live with the disease, and also for pressing governments to give public funds for research or industries to design new therapies, more adapted to their cases.
Then, in the seventies and the eighties, associations of patients for specific diseases, especially chronic diseases, were formed to help ill people face the consequences of their pathology by exchanging information about treatments and practical aspects of social life and sustenance. At this time, there was no web, but the patient associations took advantage of the progress of information and communication technology, especially the telephone, to help exchanges, and the radio to advertise the associations.