Représentants d'associations d'usagers et Loi « Hôpital, patients, santé et territoires » : enjeux et douze propositions

Abstract

Since 1996, consumers have been able to become involved in the development and implementation of national, regional and local healthcare policies, thereby demonstrating the possibility of establishing a model of democratic institution in healthcare at all levels of decision-making and policy implementation. Despite this 13-year political ambition, it is open to question whether the bill on the reform of the hospital will serve to extend the same dynamic for patients, healthcare institutions and local authorities. On 15 November 2008 and 18 April 2009, fifty-four consumer association representatives in the Franche-Comté region convened to conduct an audit of their commitments with a view to making proposals to adapt the bill aimed at reforming hospitals for the benefit of patients, healthcare and territories (HPST) before the bill is debated in Parliament (National Assembly and Senate). Despite significant investments since 1996 and some notable successes, for these representatives of consumer healthcare associations, the results are distinctly mixed. This is because they sometimes feel instrumentalized in healthcare facilities and believe that their opportunities for participation have declined since 2002. Their view is that this may diminish the power they wield at a time when the economy may be seen as becoming a substitute for public healthcare and participatory democracy. In a context of inequality in healthcare and at a time of economic crisis, this paradigm shift has tended to mobilize representatives of consumer associations. In their view, a strong counter-power is required to ensure fair and equal access to healthcare for all. They suggest twelve proposals concerning organization and professionalism at both territorial and national levels, articulated around the following principle : a representative of a consumers' association can become a regional reference in the management of the agency's regional healthcare system and may be given the means to coordinate the work of other representatives of consumer associations for each of the regional healthcare plans.