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

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  • Kempner, Joanna
  • Bailey, John

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.

Suggested Citation

  • Kempner, Joanna & Bailey, John, 2019. "Collective self-experimentation in patient-led research: How online health communities foster innovation," Social Science & Medicine, Elsevier, vol. 238(C), pages 1-1.
    • Handle: RePEc:eee:socmed:v:238:y:2019:i:c:24
    DOI: 10.1016/j.socscimed.2019.112366
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    References listed on IDEAS

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    1. Jannis Kallinikos & Niccolò Tempini, 2014. "Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation," Information Systems Research, INFORMS, vol. 25(4), pages 817-833, December.
    2. Barbot, Janine, 2006. "How to build an "active" patient? The work of AIDS associations in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 538-551, February.
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    2. Enric Senabre Hidalgo & Mad P. Ball & Morgane Opoix & Bastian Greshake Tzovaras, 2022. "Shared motivations, goals and values in the practice of personal science: a community perspective on self-tracking for empirical knowledge," Palgrave Communications, Palgrave Macmillan, vol. 9(1), pages 1-12, December.

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