“Evidence-based activism” and the multiple paths of democracy

Pr. Vololona Rabeharisoa, Centre de sociologie de l’innovation, UMR CNRS i3 PSL MINES ParisTech

Patient organizations emerged in the 1930s in Europe and North America. In a number of countries, they are today regarded as stakeholders in the domain of health and medicine. Their political and social recognition signposts a larger phenomenon of extension of democratic imperative to activities that have long been the preserve of experts. How did all this begin? How do patient organizations strive to establish their epistemic authority? What does patient activism teach us about the forms of democracy in contemporary liberal societies? Those are the questions that I will be addressing in this communication.

I will first show that patient organizations have always put patients’ “experiential knowledge” at the core of their missions. A remarkable change occurred around the 1980s, when certain patient organizations started to fight for this “experiential knowledge” be considered as a relevant corpus of knowledge for forging evidence and giving shape to medical and health issues they deem important to address. My colleagues and I call this form of patient activism “evidence-based activism”, which I will give a few examples of to illustrate patient organizations’ epistemic and political role.

Finally, I will provide a few reflections on the progressive institutionalization of the figure of the “expert patient”, a category that is today part and parcel of institutional parlance. I will show that though this institutionalization brings in recognition and legitimacy to patients’ participation to health policy making, it also comes with debates on the multiple paths of democracy in contemporary liberal societies.