Collective self-experimentation in patient-led research: How online health communities foster innovation.

Patient-led research is increasingly valued for its ability to produce quick results from large samples. This study examines how online health communities transform self-experimentation into a collective practice. Through a digital ethnography of an online patient-led research movement, the study focuses on participants who self-experiment with psilocybe-containing mushrooms as a treatment for cluster headache, a neurological disease with little medical research and huge unmet need. The internet's collectivizing features have collectivized self-experimentation, with group dynamics shaping individual choices of intervention, outcome reporting, data analysis, determinations of efficacy, and embodiment. This raises questions about individuals' roles in creating medical knowledge and data for crowdsourced research.

Study at a glance

Abstract

Researchers across academia, government, and private industry increasingly value patient-led research for its ability to produce quick results from large samples of the population. This study examines the role played by self-experimentation in the production of health data collected in these projects. We ask: How does the collaborative context of online health communities, with their ability to facilitate far-reaching collaborations over time and space, transform the practice and epistemological foundations of engaging in n = 1 experimentation? We draw from a digital ethnography of an online patient-led research movement, in which participants engage in self-experiments to develop a protocol for using psilocybe-containing mushrooms as a treatment for cluster headache, an excruciating neurological disease for which there is little medical research and huge unmet treatment need. We find that the collectivizing features of the internet have collectivized self-experimentation. Group dynamics shape everything in "collective self-experimentation," from individual choices of intervention, reporting of outcomes, data analysis, determinations of efficacy, to embodiment. This study raises important questions about the role that individuals play in the creation of medical knowledge and the data that informs crowdsourced research.