Rutgers, The State University of New Jersey, New Brunswick, NJ, USA.
Rutgers, The State University of New Jersey, New Brunswick, NJ, USA.
Soc Sci Med. 2019 Oct;238:112366. doi: 10.1016/j.socscimed.2019.112366. Epub 2019 Jun 12.
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.
研究人员在学术界、政府和私营企业中越来越重视患者主导的研究，因为它能够从大量人群样本中快速产生结果。本研究考察了自我实验在这些项目中收集的健康数据产生中的作用。我们提出了以下问题：在线健康社区的协作环境，以及它们在时间和空间上促进广泛合作的能力，如何改变参与 n = 1 实验的实践和认识论基础？我们从一项在线患者主导研究运动的数字民族志中汲取了灵感，参与者在其中进行自我实验，以制定一项使用含 psilocybe 的蘑菇治疗丛集性头痛的方案，丛集性头痛是一种令人痛苦的神经系统疾病，医学研究很少，治疗需求巨大。我们发现，互联网的集体化特征使自我实验也具有了集体性。群体动态影响着“集体自我实验”中的一切，从干预措施的个体选择、结果报告、数据分析、疗效确定到体现。这项研究提出了关于个人在医学知识创造和众包研究数据中的作用的重要问题。
