[Role of patient associations in the development of therapeutic education in France]

The aim of this survey conducted among patient associations is to define the role and the position that they have with regard to the development of therapeutic education in France. 124 associations were solicited (out of over 500 existing), and 68 replied. 17 indicated that the survey was not relevant for them. 51 answered the 43 questions related to the conception and implementation of educational programmes, their goals and objectives, the choice and selection of educational activities, the target audiences and pedagogical principles of reference. The results obtained demonstrate the predominance of informational activities and psychological support. The responding associations declared that sometimes they conduct educational activities which rather resemble informational activities. Only three associations declared having Implemented and managed formalised educational programmes based on pedagogical methods. The aims and objectives most frequently targeted were focused on increasing the patients' knowledge on their disease and its treatment. These educational programmes are usually delivered by members of the association's office staff. However, overall most of the responding associations indicated that it is relatively difficult to provide precise data on the pedagogical methods of the activities undertaken. In light of the results, it is therefore necessary to consider the totality of the activities conducted by the associations as a mechanism for building educational resources in which the place of formalised educational programmes remains marginal, even quasi-absent, for the moment. Associations believe that patient education is an important issue for their development. It is highly likely that the emergence of such programmes will only be possible if the associations show some degree of autonomy in relation to the health care sector and assert a point of view specific to patients, above and beyond that of health care users.