Abstract
BACKGROUND: In 1994, the region of Emilia-Romagna recognized the importance of citizens' participation in the regional health-care system and recommended the institution of Mixed Advisory Committees in the health districts and hospitals with the objective of monitoring and assessing health-care quality from the users' perspective. DESIGN: This paper reports findings from a qualitatively based evaluation involving direct observations of the committees and 39 semi-structured interviews: 20 with representatives of patients and users' associations and 19 with health professionals and managers involved in the activities of the committees. RESULTS: The Mixed Advisory Committees introduced for the first time in the Italian health system an ongoing deliberative approach that gave patients and users' representatives the opportunity to be involved in health service governance. The committees enabled the creation of a method of collective participation that overcame the reductive individualistic 'approach' to health-care participation. MAC participants evaluated the committees positively for their mixed composition, which integrated different cultures, experiences and professional profiles with the potential to contribute to solving health-care problems, in a consultative role. Although patients and users' representatives were able to exert some form of influence, their expectations were greater than the results obtained. The study illuminated some weak points of public consultation, such as a decline in participation by citizen representatives and a weak influence on decision making. DISCUSSION AND CONCLUSIONS: MACs developed a mechanism of participation that provides health-care users' representatives with the opportunity to contribute to the identification and analysis of critical points of the health-care system. A strength of the MACs is their level of institutionalization within the health system in the region of Emilia-Romagna. However, they contain a problem of representativeness, lacking a formal system of determining a representative composition from among patients and users' associations. The case study also illustrates that participation without the cooperation of the health service, and financial and organizational support, will result in a decline in citizen participation, given the resources required of these volunteer citizens in return for limited results.