On the Multiplicity of Lay Expertise: An Empirical and Analytical Overview of Patient Associations’ Achievements and Challenges

This chapter examines patient organizations’ involvement in the production of knowledge and the governance of health. It addresses three questions: (a) what sort of knowledge and expertise do patient organizations bring in? (b) how do they trigger changes in health policy making? and (c) to what extent does the current institutionalization of patient participation strengthen democracy in contemporary societies? This chapter offers empirical and analytical insights into patient organizations’ “evidence-based activism,” a term that captures their efforts to articulate experiential knowledge and credentialed knowledge to give shape to issues they deem important to tackle, and for turning these issues into objects of collective inquiry. It also revisits notions such as “experiential knowledge,” “lay expertise,” “expert patient,” that are not only analytical tools for science and technology studies scholars and social scientists but also part and parcel of today’s institutional parlance. It concludes with a few suggestions for future investigations in health democracy.