Читать книгу Altering Frontiers - Группа авторов - Страница 21

With the medical model, which can be described as “organic”², imposing itself in the institutionalization of care in Western countries, and relegating the educational dimensions of care to the background, at the end of the 20th century and because of the link between prophylactic policies and the emergence of patient knowledge, it was called into question by the modification of the place of patients’ knowledge in the healthcare system. As new figures for patients and citizens who disseminate this knowledge are increasing in the 21st century, it is because of the profitability of their involvement in the management of healthcare systems (Boivin et al. 2014). Historically, it was the reaction of patients to the management of AIDS that enabled health democracy to take root and to articulate patient expertise and public health policies. However, the first group of patients mobilizing empowerment processes was initiated in 1934, within the Alcoholics Anonymous movement.

DEFINITION 1.1. Empowerment. – The process by which individuals and groups act to gain control over their lives and thus gain greater control over decisions and actions affecting their health in the context of changing social and political environments. Self-esteem is thus strengthened, critical thinking, decision-making and action capacity are promoted. Even people with few abilities or in precarious situations are considered to have strengths and resources. This process cannot be produced, only fostered.

It was at this very moment that the cornerstones were laid for a new type of exchange based on informal and formal practices between patients. The organizational model that emerged from this was to be extended to other groups, such as drug users in the 1950s and people living with HIV in the 1980s. This phenomenon was then transposed into self-help and self-empowerment movements of user groups in several other addiction pathologies (for example, alcohol in 1935, drugs in 1953, eating disorders or compulsive gambling behavior). This type of interaction, based on mutual aid, information sharing between patients, peer training and developing a global approach to the individual, has gradually challenged and then upset the pyramid of medical knowledge and power alone as a source of healing and disease management. It has also made it possible to meet patients at the very site of their addictions.

The organization of this movement has been formalized according to already operational models, such as those of learned societies or large charitable organizations. This movement thus took this form while, paradoxically, throughout the 20th century, medicine became institutionalized, raising health as a primary value in society in large part thanks to technological discoveries that supported the medical approach, affirming technicality as the spearhead of modern medicine. This institutionalization is accompanied by the displacement of knowledge and care practice from the family sphere to the group and societal spheres, a process which, amplified by societal transformations, sees the development of women’s work taking them away from the family sphere. In this redistribution of knowledge, roles and powers, resorting to a “family doctor” and hospital services will become the norm, giving doctors and the medical institution the possibility of seeing themselves higher in the hierarchy because they are able to defy pain and death (Foucault 1963).

In this process at work, the women, ancestral holders of a “care-taking” inherited from one family member to another, used to practice bona famae (reputable) remedies, occasionally calling on outside practitioners (binders, healers, etc.) to intervene most often in the final stages of the disease during which the prognosis proved fatal and these forms of knowledge were lost. To conclude on the elements leading to a shift in the distribution of care knowledge, it is necessary to highlight: (1) the death of family members in specialized institutions, first in the hospital where the majority of elderly people died during the 20th century, then to dedicated institutions when signs of old age appeared; (2) the appearance of social protection systems – driven by the economic development of our societies – which, although different from one country to another, provide social added value replacing support cells at the family level.

Economic developments also penetrate the world of healthcare, as the pharmaceutical industry developed and grew throughout the century to become part of the international healthcare system by developing global pharmaceutical trusts whose missions are research and marketing of medicines.

In reaction to this medicine, which is carried and dominated by techniques and technologies, both in the care and in the organization of care, a movement of humanization emerges as a compensation of the dominant medical model with the appearance of listening and accompaniment techniques during the 1970s.

Health professionals are organizing themselves to intervene in this trend, first of all outside the institutional framework that protects these new approaches. Not everything concerning patient information and education has yet been translated into international (WHO 1986) recommendations. At the societal level, new public health policies are needed. The increase in the number of people living with chronic diseases raises the question of the involvement of the patient in the management of his or her treatment. Beneficial effects have been recognized by studies. This involvement improves adherence to treatment in multiple pathologies, and doctors are therefore seeking to develop tools to increase it. This transformation of patient care emphasizes the need not only to inform but also to educate the patient in order to be as close as possible to a so-called “informed consent”. This notion of consent initially emerged for research during the Second World War and was the first time that the Nazi regime began experimenting in this field and questioned the behavior of medical doctors who put forward the concept of bioethics. In the course of this process, the patient then began to demand, beyond mere information, a sharing of the decisions that would be taken thanks to free and enlightened information and the right to self-determination.

However, it was during the 1980s that an upheaval was to take place in the attempt to rebalance knowledge and medical power in the context of relationships with patients and populations. It is the result of the emergence of a disease against which, at first, medicine remained powerless: HIV/AIDS. The patient-stakeholder relationship then established itself during the last two decades of the 20th century. This movement added a new element to those previously described and driven by the movement or movements of patients (mutual aid, information and training): the use of an activism that claims to play the role of reformer within a changing society – the information society and then the knowledge society, in the 21st century.

The socialization of action in the field of health then became a fact of society. The approach to health was profoundly modified by the action of these new patients who, as early as 1983, set out new demands through the Denver Principles. They then expressed the need for their participation in everything that concerned them.

At the heart of this change is the desire of patients to become “stakeholders in their own health”; a social reform action explained in 1989 at the World Conference on HIV/AIDS (Canada) by the founding president of the French association AIDES association, Daniel Defert. This period saw the emergence of new types of associations with innovative functions.

These associations were created, from the 1990s on, on inter-associative collectives³. These forces and sources of collective knowledge relied on the media to disseminate their message in public opinion and make visible the system’s inability to deal with situations. As a result of this shock, patients, through these associations, demanded to participate fully in the organizational processes and in the orientation choices of public health policies. The fact that young people die without the cause being war creates a shock wave among Western populations. Associations are becoming aware of this and are quickly learning to use public opinion to influence political decisions.

The associative movement is then profoundly modified, in its structures and by being partly composed of patients and relatives. The latter act from then on to assert their status as reformers of the health system. They provide a generalized awareness of the fact that the sick individual – as the first person concerned – can become a stakeholder in his or her own health; the idea that one holds knowledge that one can express gradually emerges. This shift questions and upsets the dominance of medical knowledge and powers as the only sources of healing and management of illness. This approach is beginning to appear relevant, even necessary, for the management of chronically ill patients. Indeed, in this field, multiple studies prove the limits of an increasingly technical and efficient medicine in the treatment of the acute phases of diseases and other accidents of life. Thus, the notions of compliance – the ability of the patient to follow medical prescriptions – or more precisely of non-observance are opposed to the solutions, however, which are still largely topical and which propose increasingly specialized medicine, defining the individual according to a mechanistic philosophy. Patients 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.