On the multiplicity of lay expertise. An empirical and analytical overview of patients associations’ achievements and challenges

The notion of the “expert patient” has become quite prominent in recent years. In manycountries, patients are invited to sit on various committees with biomedical specialists to sharetheir expertise on diseases and health problems with various institutions. This situation standsin stark contrast with the medical paternalism that prevailed not so long ago. How did thiscome to pass? What is the nature of the patient expertise that is being solicited? How havehealth policies changed as a result? These are the questions that we examine in this article. Inlight of previous and recent fieldwork that we have done, and a selection of case studiesreported in the literature, our objective is to revisit a constellation of notions such as “expertpatient,” “lay expert,” “lay expertise,” “experiential knowledge,” and “expert of experience”that are not only analytical tools for STS scholars and social scientists, but also part and parcelof today’s institutional parlance.This article is divided into four sections. In the first section, we focus on the production ofexperiential knowledge by patient associations. In the second section, we show how they alsostrive to transform the content of credentialed expertise in order to better align this expertisewith their concerns. The third section illustrates “lay expertise in action” and addresses thefollowing questions: What changes do patient associations bring to health policymaking? Howdo they achieve these changes? In the fourth and last section, we examine theinstitutionalization of the “expert patient,” which manifests not only in legislation thatmandates patient participation, but also in a variety of initiatives implemented by institutionsto mobilize patient participation in medical research and health programs. In the conclusion,we suggest a few avenues for future research that may complement the corpus of knowledge on lay expertise on aspects that thus far remain less investigate