Quels enseignements tirer de l’expérience de la pandémie de la COVID-19 dans l’accompagnement des patients chroniques ?

From an ethical, sanitary, social and political perspective, the first months of the COVID-19 pandemic were – and still are – a destabilizing experience. This was particularly so for people living with one or more chronic diseases whose quality of life, and sometimes survival, depends on a large number of decisions and actions in which they rarely participate. Such healthcare practices and situations are not new, but this epidemic period has brought them to the fore. In general, among the difficulties encountered during the first months of the COVID-19 pandemic, the most fundamental were the difficulty of supporting and developing the autonomy of people and of integrating the patient experience to think, perform and organize healthcare and health services. Without practices of continuous adjustment of the health system to the concerns, expectations and needs of the actors of health, without having as a horizon the development of people's power to act, the health system found itself to concentrate the essential of its resources on a limited type of users and acts. However, even in this context, alternatives to healthcare and health services have emerged, in particular through the actions of patient associations. It is essential that we learn from these first months to refocus health decisions on participatory actions that are anchored in the individual and collective experiences of the actors of health.