Epistemology of the side effect: anecdote and evidence in the digital age

Abstract

Through the history of rxisk.org, this article explores some of the Web’s effects on the production and circulation of pharmaceutical knowledge. RxISK is an independent website that solicits reports from patients in order to uncover drug-induced harms which clinical trials and national pharmacovigilance schemes fail to identify. The first part of the article locates the origins of the project in the nearly 15-year struggle to obtain recognition and redress for one particular side effect of selective serotonin reuptake inhibitor (SSRI) antidepressants—their ability to trigger violent or suicidal behavior. That struggle, I show, brought to light the ways in which modern evidence-making practices obscure the harms of pharmacological treatment. The second part, based on interviews with the site’s creators, examines how RxISK’s data collection practices seek to convert the Web from a site for the circulation of misinformation into a usable source of new knowledge about drugs. The project’s originality, I argue, lies in its effort to reframe the relation between anecdote and evidence so as to liberate the patient’s voice from the burden of representativeness. Within this reframed epistemology, the project is also freed from the imperative of large-scale data extraction that increasingly dominates the economy of digital health.