The communication of patient's associations
Health issues today involve various actors (politicians, scientists, experts, patients and families, etc.). Patients Associations are not ‘new’ actors that have emerged from nowhere, even though the onset of AIDS was instrumental in bringing them to public awareness. The aim of this research is to gain an understanding of what Patients Associations represent in our society, in the health sector and for the patients. A broad spectrum of actors belongs to these Associations: patients and their families, scientists, volunteer workers, etc; any of whom can have links with politicians and media actors. A comprehensive understanding the driving forces of the Associations, the sharing of power among their actors and their influence on the health sector is necessary. Do Patients Associations imply changes in the health sector and for the patients? Important aspects are the roles, implications and motivations of patients and activists. We will also analyse the communication strategies of Patients Associations and their relations with the actors in the media. Moreover what conditions of communication do they participate in creating? How do patients use this information and what is at stake? The theory of the public sphere from Habermas (1962) and the works on this theory and its criticisms are important for this reflexion, even though this research is not based on either this theory or its critiques. This research favours interdisciplinarity and adopts an approach incorporating not only the information and communication science, but also an historical approach and a sociological and political science approach. Our first hypothesis is that changes are occurring in the relationships of patients with Patients Associations and consequently with the health sector (commitment, individualization, consumerism, experience, etc.). Secondly we hypothesize that an evolution of the ‘publicisation’ of the patients’ associations and of health issues in our society is taking place. Thirdly, we hypothesize that Patients Associations and their activities enable to emphasize the difficulties and limitations of health institutions (place and roles in the scientific sphere, missions of scientific information and communication of the Patients Associations). Does a ‘health oriented public sphere’ exist? We will focus on the factors which participate in this process: the driving forces, the construction of public problems, the multiplicity of actors, the methods of ‘publicisation’, the limitations and difficulties. The methodology will be qualitative (open interviews). We have noticed there are many Patients Associations, which are responsible for different pathologies. Patients and actors (e.g. people in charge of the Associations, volunteer workers, etc.) of these organizations will be interviewed. We will also analyse the Associations’ publications and their visibility in the media and will therefore also interview the actors in charge of the communication strategies of the Associations.