MeST seminar with Vololona Rabeharisoa: Evidence-based activism: patients’ organizations’ past achievements and new challenges

Professor Vololona Rabeharisoa (Centre de sociologie de l’innovation, MINES ParisTech)

ABSTRACT: In a number of European countries and in North America, patient organizations 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 and debates that have long been the preserve of experts. This extension does not always run smooth and straightforward though, for it questions the epistemic basis for decision-making. How did all this begin? How do patient organizations strive to establish their epistemic authority in order to transform the shaping and governance of medical and health issues? What challenges do patient organizations today face with the institutionalization of patient participation? Those are the questions that I will be addressing in this communication.

Drawing on past and recent research works that I have conducted with my colleagues, I will first display a few historical landmarks on the emergence of patient organizations in Europe and North America in the 1930s-1940s. I will show that patient organizations have always put patients’ experience at the core of their missions, be it mutual help or advocacy.

I will then move on to the 1980s onwards, when certain patient organizations have started to turn their experience into a body of knowledge, and to fight for their “experiential knowledge” be considered as a relevant corpus of knowledge for forging evidence on medical and health issues that they deem important and legitimate to tackle at an individual and a collective level. My colleagues and I call this form of patient activism “evidence-based activism.” I will provide a few examples of how this experiential knowledge and expertise is produced and targeted to a variety of domains, ranging from the understanding of diseases to the structuring of epistemic communities and the pricing of drugs.

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 challenges on the role of patient organizations in the definition of the common good.

May 20, 2020, at 14:30-16:00, in room 5.0.22 at CSS, Øster Farimagsgade 5A, building 5

Everybody is welcome!