Health consumer and patients' organizations in Europe: towards a comparative analysis

Despite the rise of health consumer and patients' organizations (HCPOs) in modern health-care systems, studies are few and far between. In particular there is a lack of comparative research across Europe and at the pan-European level. In an effort to address this gap, an expert workshop was held in Vienna in February 2006. This involved 22 delegates from 10 European Countries and was funded by the European Science Foundation (ESF). The workshop reviewed the development of HCPOs in Europe and their role in the policy process in order to establish a platform for further research in this field. It found evidence of an increase in HCPOs across European countries, increased engagement with policy makers and political institutions, and the creation of alliance organizations bringing together HCPOs across the sector. However, variations between countries were observed, relating to different political, cultural and health system contexts. There was no consensus on whether the rise of HCPOs constituted a new social movement. An increase in HCPO activity at the pan-European level was noted, reflecting the increased interest of EU institutions in health policy. At both domestic and European levels, concerns about the representativeness and legitimacy of HCPOs were raised as well as questions about their independence (notably with regard to the drugs industry). HCPOs face a number of obstacles including: lack of capacity and resources, fragmentation and the power of more established interests within the health-care system. The workshop concluded that further research is needed in this field, in the form of a comparative study of HCPOs in European countries and an analysis of their activities at the pan-European level.