9th Conference European Sociological Association

RN16 Sociology of Health and Illness

2009-09-05 11:00:00 2009-09-05 12:30:00 Saturday, 5 September 11:00 - 12:30 Public Health, Health Promotion and Risk II Building I, 1E4

Research engagement, dissemination of activism and health governance: the case of rare disease organizations in Portugal

Over the last decades, new patient organisations have emerged in several parts of the world, contributing to the opening up of spaces of participation and governance in the fields of health policy, health care and research. An increasing number of these organizations are of the type described by V. Rabeharisoa and M. Callon as related to the ?war on diseases?. They have have put scientific, cognitive and therapeutic activism at the core of their action at the political and social levels. The EPOKS (European Patient Organizations in Knowledge Society) project, funded within the EC Science and Society Program, seeks to investigate the contribution of patient organizations to the production of knowledge and to the governance of knowledge production through a comparative approach of the situation concerning four health conditions, including rare diseases, with a focus on the emergence and the role of European coalitions in this field.
These new collective actors have often engaged in new forms of intervention, acting as mediators between heterogeneous actors, promoting coalitions at the national and transnational ? namely European - levels, and entering domains, such as research, previously regarded as the territory of medical and health professionals.
Within this collaborative project, empirical work was carried out in France and Portugal by researchers from CSI (Ecole Nationale Supérieure des Mines, Paris) and CES (University of Coimbra), characterizing and comparing rare and/or orphan disease organizations? modes of engagement in research and dissemination of scientific activism and the implications of these processes in health governance. Preliminary results based on a survey and interviews carried out in Portugal are presented and discussed.