demand that the choices of research, prescription and therapeutic use be explained to them and that their opinions be consulted in the institutional administrative and decision-making bodies. The “AIDS years” and the emergence of this new associative trend are thus modifying the balance of power.
Therefore, patients, through associations, demand to participate fully in the organizational processes and in the orientation choices of public health policies, not only for the survival of patients, but also to make proposals in the face of the risk of hecatomb caused by the epidemic. Public policies are gradually changing the place of patient associations in the management of the health system and in the organization of clinical research, at all stages – right up to the marketing of drugs and the care of those affected – thanks to their lobbying actions. To achieve this, the associations have implemented actions and disseminated magazines for people living with HIV. Another situation arising from the shock of the AIDS years, another public health problem that has accentuated the importance of consulting associations of patients and their families: the contaminated blood affair. Although handled differently in the United States and France4, it had a significant impact on public opinion. This second crisis and all the scandals that have occurred since have been brought up to date with certain regularities (nosocomial infections, asbestos, Creutzfeldt-Jakob disease, drug scandals, etc.) dealt a final blow to the paradigm of management by the monopoly of scholarly knowledge – be it medical, managerial or administrative – as it had been developed until then. Confidence in this paradigm was then undermined; by informing the general public of its problems and thus spreading the mismanagement of public health problems, the media propelled the associations which, supported by public opinion, initiated profound reforms in the management of health systems.
Thus, the emergence of this new associative approach has played on public opinion through the use of communication, with the establishment of large media “Masses” calling for public generosity and the collection of donations – such as the successive Sidaction and Telethon – which have been the impetus to establish new rules. In fact, in parallel with the associations fighting HIV, and while people living with mental disorders within the “Recovery” movement framework are5 taking up the ideas of the Denver Principles for HIV, the AFM (Association française contre les myopathies, French Association against Myopathies) is inventing a model of operation that has been painstakingly acquired and defended with constant vigilance.
This association will clearly intervene without encroaching on the prerogatives of each other and will become as a key player both nationally and internationally. It will be the first association (and the only one to date) to constitute the necessary elements for the production of drugs for orphan diseases that are not of financial interest to the market-driven pharmaceutical industry. In fact, the members of these new associative entities have a better capacity to raise funds and therefore to organize and pilot research tenders.
Through this power, the associations consecrate the place of patients and users in the healthcare system. The HIV-positive movement organized the first general meeting on their problems. These were later followed, in France, by the general assemblies of families and patients living with genetic and orphan diseases (1995) and the états généraux des personnes touchées par les cancers (general conditions of people affected by cancer) (1998), leading to the états généraux de la santé (general conditions of health national conference (1999), which was the driving force behind institutionalization by legislative means of the possibilities of the 21st century in terms of the potentialities of participation both for their health and for health in general. This process culminated in the law of March 9, 2002, relating to the rights of patients and the quality of the health system, which enshrined health democracy in France6.
In the 1990s, a technological revolution played a parallel role and accompanied this transformation of mentalities, practices and knowledge, both individually and collectively. The advent of the Internet democratized access to medical information, and the media, whether on the Internet or on other types of support, was used to develop the principles of information, training and mutual aid. Associations are rapidly taking over the Internet, as much to raise awareness among the general population (lobbying) as to disseminate to the greatest number of individuals and groups concerned medical information that ranges from popularized information (a term we prefer the expression “democratized information” because it allows everyone to get an idea and participate) to real scientific information delivered as such. The associations subscribe on the Internet to the most renowned scientific journals and learn how to decipher and retranscribe the latest news. They form networks on the Web that are highly reactive. In this way, they have integrated, if not anticipated, the behaviors of the population.
Indeed, with the arrival of the Internet, new health information and exchange practices emerged. Thus, since the 1980s, citizens and patients developed and implemented framework tools that promoted individual and collective empowerment and had a de facto impact on the health system.
1.3. From paternalism to different forms of participation and partnership with patients
Paternalistic approaches to care, which emerged between the 1940s and 1970s from medicine that gradually became all-powerful within health systems structured around acute and highly specialized care offered in health facilities, were gradually combined, or even replaced, to meet the needs of populations.
They are the result of epidemiological mutations, such as the significant increase in the prevalence of chronic diseases and aging populations. They have thus gradually given way, since their timid beginnings in the 1970s, to patient-centered approaches. These take into consideration the particularities, values and experiences of patients.
All over the world, healthcare organizations, institutions and universities have gradually redoubled their efforts to involve patients and make their participation increasingly active, in very different ways and with very different motivations. Recent initiatives, such as shared decision-making, have added to the diversity of approaches in therapeutic patient education (TPE). Then, starting at the University of Montreal at the beginning of the second half of the 20th century, a new approach emerged under the term “partnership approach”; it is a partnership of care with the patient, otherwise known as the “Montreal model” by the Americans since the workshops conducted in 2014 under the aegis of the Macy Foundation.
Thus, there is currently a continuum of models for mobilizing patient and population empowerment (Figure 1.1); it includes access to information for patients and populations, their contribution to all stages and strata of care, their involvement in healthcare organizations through participatory modalities that go as far as co-construction and co-design between patients and healthcare professionals (Pomey et al. 2015).
1.4. Innovative practices
As illustrated in Figure 1.1 on the continuum of patient engagement, the care partnership with the patient stemming from the Montreal model can be seen as one of the most innovative practices in collaboration between patients, family members and the public.
Figure 1.1. Continuum of patient engagement modalities
This approach places more emphasis on the sharing of power and responsibility between patients and professionals (from “care for” to “care with”) than patient-centered approaches
