Paper short abstract:

An ethnographic inquiry of knowledge-related collaborations between some Belgian patients’ organizations engaged in evidence-based activism and scientific and medical experts, in order to address diverse social, political and biomedical claims.

Paper long abstract:

Informing about pathologies and related issues is a main goal for many patients' organizations (POs). Drawing on ethnographic observations, online and offline documentary analysis, and interviews with informants involved in some Belgian POs concerned with various genetic pathologies (such as neuromuscular, renal, or intellectual disorders), this paper inquiries the modes of production, mobilization and circulation of information in which they are engaged. Actually, information activities encapsulate multiple types of knowledge about health and disease, which are set in motion in order to address diverse social, political and biomedical claims. Yet, while STS scholars have traditionally seen POs as epistemic communities, they point out an increasing engagement in novel forms of knowledge-related collaborations over the last decades, especially with scientific and medical experts. This leads to the emergence of a certain evidence-based activism (EBA) among POs, characterized by a growing articulation of credential and more "experiential" knowledge to define common epistemologies of the conditions they are concerned with. Then, the aim is to flesh out the recent concept of EBA by empirically questioning what it covers. Whereas some tend to underscore some "radical openings in technoscientific practice", observations within diverse POs engaged in EBA rather show a continuous co-production of knowledge taking place from inside. This is especially illustrated in the information activities resulting from a close collaboration between governing boards mainly composed by patients and relatives, and incorporated experts committees. So, this also questions the critical position of STS towards mainstream paradigms they bring to the fore.