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.
A non-profit organization called Clusterbusters, representing an online network of people with cluster headache, developed a standardized protocol for using psychedelic mushrooms as a treatment without laboratory equipment or institutional scientific support. In a digital ethnographic investigation, researchers found that Clusterbusters used homegrown psilocybe mushrooms and created an "embodied standard" for dosage that combined the weight of the dried mushroom with the subjective experience the dosage produced. This hybrid measure enabled a collective phenomenological understanding of a standard dosage. The pragmatic goals of citizen science knowledge production differ from institutionalized scientists' need to legitimate findings with academic journals, peers, and regulatory agencies.