RESUMOO sucesso das estratégias terapêuticas no acompanhamento dos doentes crônicos tem como efeito o aumento da expectativa de vida e uma melhora da qualidade de suas vidas. Novos mecanismos, tal como a educação terapêutica do paciente, questionam o campo conceitual da formação de adultos. Esse artigo propõe considerar a experiência vivenciada da doença como uma oportunidade de aprendizagem e de desenvolvimento para o sujeito doente. O reconhecimento da experiência dos doentes deve abrir para uma validação das competências adquiridas pelos doentes, colocando em questão uma possível profissionalização. A Universidade dos Pacientes, um dispositivo universitário que diploma os doentes, ilustra em que medida o campo das inovações destinadas aos doentes crônicos ainda tem que se desenvolver para que os doentes possam tornar-se atores-chave na melhora da organização dos tratamentos. Palavras-chave: Doenças crônicas. Universidade dos pacientes. Educação e formação ao longo de toda a vida. Educação terapêutica dos pacientes. ABSTRACT RECOGNIZING AND VALIDATING PATIENTS' EXPERIENCE: THE PATIENTS' UNIVERSITY PILOT PROGRAM IN FRANCESuccess of therapeutic strategies in the treatment of chronic patients has the effect of improving their quality of life and helping them to survive while reducing risks of complications. The development of patient education questions the conceptual field and usual training strategies used in adult education. This paper proposes to consider the experience of illness as an opportunity for learning for patients living with a chronic disease person. The recognition of patients' expertise and experience must give them access to news ways of validation and professionalism for those who want to become health actors and participate to the improvement of care organizations. The patients' university is an academic pilot project which is an example of innovation which can be implemented to help people experiencing chronic disease to become keys actors contributing to the improvement of health organizations.

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Objectives and ContextChronic kidney disease (CKD) patients over 65 mostly suffer from two or more comorbidities (75% have hypertension, 35% have diabetes) with a mean of 4.5 chronic conditions. Prescriptions delivered by the Nephrology unit of a University Hospital in a urban area show an average number of medications from 6 to 15 different drugs for the treatment of both acute events and several chronic diseases. Patients seem to hierarchise their intake of medications according to the negative impact of symptoms on their quality of life, (such as pain, discomfort) and tend to omit taking medications that are active on silent symptoms although these symptoms if not addressed may be life threatening. Moreover, the design of most drugs (pills, or inaccurately labelled containers, leaflets) is not appropriate for the elderly especially for those suffering from disabling comorbidities (sight defect, cognitive disorder or troubles with fine grasping in the case of arthritis). The burden of the number of medication prescribed and the complexity of changes expected from the patients to appropriately cope with the prescribed regimen is particularly heavy to elderly patients. In other words, CKD seniors cannot develop their own self-care skills and therefore experience frequent unintentional adherence or relapse/complications in their care caused by external conditions. These obstacles have a serious negative impact on their health maintenance and outcomes. Therefore, educational programs for the elderly with CKD must focus on strategies to avoid or prevent non intentional non adherence.MethodsA multidisciplinary integrated educational program was implemented in 2007 in the Nephrology department with:analysis of patients' needs through a survey (interviews of 21 patients)analysis of the subjective experience of dialysis sessions in 14 patients and 15 nurses working in the dialysis unitdesign of a survey exploring patients' educational needsoutpatient consultation delivered by trained nurses on adherence available 6 days a monthweekly educational and patient workshop including the results of the survey focused on patients' needscreation of educational material on more than 20 different medications (information leaflet for patients)«medication info» consultation for every patient checking out from the nephrology unitintensive communication and training program on «education in chronic disease) towards health care providers in the renal unitdesign of educational tools for the team performing educational sessions: poster with life-size pictures of pills for 61 of the most frequently prescribed drugs, therapeutic planning, risk reduction pyramid for drug's use, scripts for interviewing patients (to work on adherence)…Results Improvement of care coordinationUse of a negotiated prescription process» after having worked individually together with the patient on the aims of the therapeutic projects and having defined common goals for the patient and his teamData collection of case studies analysed according to the MOTHIV theory b...

O sucesso das estratégias terapêuticas no acompanhamento dos doentes crônicos tem como efeito o aumento da expectativa de vida e uma melhora da qualidade de suas vidas. Novos mecanismos, tal como a educação terapêutica do paciente, questionam o campo conceitual da formação de adultos. Esse artigo propõe considerar a experiência vivenciada da doença como uma oportunidade de aprendizagem e de desenvolvimento para o sujeito doente. O reconhecimento da experiência dos doentes deve abrir para uma validação das competências adquiridas pelos doentes, colocando em questão uma possível profissionalização. A Universidade dos Pacientes, um dispositivo universitário que diploma os doentes, ilustra em que medida o campo das inovações destinadas aos doentes crônicos ainda tem que se desenvolver para que os doentes possam tornar-se atores-chave na melhora da organização dos tratamentos.