Over the past three decades, patient activism has undergone profound changes. Patient groups do not longer content to provide support to their members, or to defend their rights. Many patient organizations also contribute to the production and dissemination of knowledge on diseases or health issues they are concerned with. A growing and rich body of the literature in social sciences has documented this watershed in patient activism. In the prolongation of these research works, I would like to introduce the notion of “evidence-based activism” which my colleagues and I forge to capture patient organizations’ politics of knowledge.
Drawing on EPOKS, a European funded research project which my colleagues and I completed a couple of years ago, I will first offer empirical data and analysis with an aim at characterizing “evidence-based activism”. I will then focus on three disruptive effects of “evidence-based activism”: on the representational capacity of patient organizations, on their modes of enrollment of specialists and policy-makers, and on the transformation of epistemic communities on their conditions. To conclude, I will reflect on the broader political effects of
“evidence-based activism”, notably on the relations between patient organizations and research institutions.
