Vision

Self-learning and experiential education are foundations for a new paradigm of caring for special needs and disabilities towards a better quality of life. The recognition of the experience and knowledge of patients is a key feature in the evolution of the representations of health and illness:

The institutions of care identify themselves as places of education, while global health system claims the shift to a paradigm of health democracy. The role of patients’ experiential knowledge represents a crucial resource for public and social management of illness (notably chronic illnesses, mental disabilities and special needs). Participation of patients to the definition of public care policies is manifested in the increasing inclusion of “patients experts” within public health negotiations, decision-making in treatment strategies and clinical research protocols. Even new trainings and academic curricula are now designed not only as programs for therapeutic education of patients, but more specifically derived from patients. Several experiments over the last three decades throughout European countries, have demonstrated the relevant role of collective actors, such as associations of patients and/or families, in the process of care democratization, gaining better life quality and control over their health and its determinants.

Health promotion, health prevention and health equality, as assessed in the recommendations of the Ottawa Charter for Health Promotion (1986) and the Bangkok Charter for Health Promotion in a Globalized World (2005), represent the fundamental values of health democracy. However in the actual context of economic crisis, precariousness, transnational migrations and global environmental changes, further challenges need to be faced in order to deal with increasing inequalities between countries, vulnerability of children and disabled adults, and exclusion of the marginalized. Moreover, in a process of person-centered care, in the respect of both individual and environmental diversity, it is fundamental to enhance patterns of knowledge production and recognition as emanating from the subjects of care, their expertise and intelligence. Finally to empower their expression would lead to overcoming the traditional dichotomy between formal and informal knowledge in medical sciences.

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