How to build an "active" patient? The work of AIDS associations in France

Abstract

"What is an "active" patient?" is a question that arises in most medicine and illness-related social science research. This article examines the normative work carried out by AIDS associations in France to define an "active" patient in healthcare and research. While the fight against AIDS is often presented as being homogenous, we look at the diversity of opinion between different associations (Aides, Act Up-Paris, Actions Traitements and Positifs). We find four different cases: the patient as manager of his illness, the empowerment of patients, the science-wise patient and the experimenter. Systematic comparison of these cases shows that these perceptions of the "active" patient, in terms of the same pathology, are based upon different ways of seeing: the nature of the relationships between the different types of knowledge of the illness (scientific knowledge, clinical knowledge, experience of the illness) and the distribution of roles and powers among the various actors in the healthcare system (the government, pharmaceutical companies, the medical profession, the patients). This article highlights the historical dynamics which allow us to have a better understanding of these differences, especially the major distinction between two generations of associations, which adopted different positions with regard to their public identity.