[How to build the legitimacy of patient and consumer participation in health issues?]

Initially introduced by Juppé in 1996, the legislative reforms of January 2nd and March 4th 2002 legally enacted new forms of consumer representation and participation in the development of the health system. However, it appears that while this new role which was created to ensure legitimate participation has been recognised by law in theory, it has not necessarily received the same recognition and incorporation in practice at the grass roots level. As a result, it is now essential to think about practical methods of representation in order to sustain local legitimacy of consumers and patients on the ground and construct it from the bottom-up. The goal of this work was to understand how and under what conditions local legitimacy for health care system consumers, as a particular group of actors, can be effectively built, independently and irrespective of the specific question of elective democratic processes. The foundation of this work is based on material which resides in the collection of data from various local participation experiments that we or other researchers have contributed to establishing in a select group of health care settings. The results of this analysis serve to update a list of principle factors through which the legitimacy of the health care system's users is constructed. Such factors include the following: the promoting agents' expectations vis-à-vis the system's users and the a priori status which is given to them; the identification and selection methods used for choosing users, and the link to the types of users in terms of representation; the nature of the "generalisation" process for decision-making, understood as the process which transforms individuals' words and perspectives into collective ones; and the conditions for and modes of interaction between laypersons and professional experts. Finally, the paper presents the potential conflictive relationship or tension which may exist between representation and legitimacy with regard to the process for building legitimacy. The authors discuss the links between local, direct and elective democracy. The paper describes how effective democratic conditions can be built on the ground (from self-administered legitimacy to externally acknowledged legitimacy). In conclusion the paper succinctly distinguishes the articulation between representative democracy and participatory democracy, and how local processes relying upon direct democracy may be properly linked to the more "classical representative model of democracy".