ABSTRACT
This chapter covers definitions, concepts, and debates relevant to health advocacy and activism, namely, more or less institutionalised forms of action aimed at improving access, conditions and development of health treatment and care. The first part of the chapter specifically focuses on practices developing within patient advocacy organisations and groups that advocate for the direct participation of patients in health policy and research decision–making. These practices are discussed in relation–and as a reaction–to the so–called “scientisation” of policy decision–making, namely the contemporary emphasis on scientific evidence to inform policy making. The chapter’s early sections also explore specific examples of patient activism, like the French AIDS and autistic movements, and follow their development since the 1980s. Next, the chapter introduces a number of closely interrelated concepts that are key to the discussion of health participatory practices, namely: illness identity, illness narrative, self–advocacy, experiential knowledge and lay expertise. By drawing on these concepts, the remainder of the chapter zooms in on participatory practices by patient communities focusing on hereditary conditions in general and rare disease patient communities in particular.
