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

This digital ethnographic study investigates how online health communities use self-experimentation to determine their treatment protocols by examining the case study of clusterbusters, a platform that came into being when a self-experimenter reported that LSD had prevented his usual cluster headache cycles on an internet forum. This example typifies how a rare disease being responded to with an even rarer form of intervention is cultivated through the collective experimentation of patient communities embedded in social networks who engage in collective forms of knowledge production.

Abstract

“Introduction: 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?

Methods: 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.“

Authors: Joanna Kempner & John Bailey

Summary

Researchers are increasingly valuing patient-led research, and this study examines the role played by self-experimentation in the production of health data collected in crowdsourced research projects.

1.Introduction

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 article explores how people in online health communities use self-experimentation to produce innovative treatments for cluster headache.

The internet has expanded possibilities for self-experimentation, by creating spaces where sick people can self-experiment together, and by transforming self-experimentation into a collective way of producing knowledge. This knowledge is produced through collective self-experimentation.

2.Background

Scholars have brought to light remarkable stories of people who, marginalized from the medical system, organized their collective embodied experience to challenge dominant epistemologies of science.

Online health communities can be a powerful force in biomedical research, particularly for patients with contested, rare, or under-resourced diagnoses.

Government agencies and corporations are embracing public participation in research. For-profit entities such as 23andme, Quantified Self, and PatientsLikeMe generate income using anonymized, user-generated data.

PatientsLikeMe demonstrated how crowdsourcing could be used to produce innovative research using data collected from member-patients engaged in self-experimentation.

Crowdsourcing, like that done by PatientsLikeMe, relies on aggregated reports from patients, many of whom typically engage in self-experimentation. However, analyses of these data remain guided by the institutional logics of formal scientific research.

2.1. Self-experimentationasanindividualandasacollectivepractice

Multiple scholars have investigated self-experimentation as a method in medical research. Embodied health movements have found self-experimentation to be a powerful method of inquiry in patient-led efforts to challenge the dominant medical system, such as the 1970s women’s health movement.

The women’s health movement’s knowledge-making relied heavily on technologies like the mimeograph, and the Internet age has made communal production of self-experimentation more apparent. This study seeks to understand how participation in an online health community alters individuals’ experimental practices.

2.2. Ourcase:TheClusterbusters

We studied a group of patients called the Clusterbusters who are seeking to develop new therapies for cluster headache.

Cluster headache is a severe neurological disease that affects 1 in 1000 adults and is difficult to treat. It takes five years to receive a proper medical diagnosis.

The Clusterbusters are a group of people with cluster headache who have taken LSD or psilocybin to treat their cluster headache. Their experimentation with psychedelics is unusual because the United States has classified LSD and psilocybin as Schedule I substances, and because of the stigma associated with illicit drug use.

3.Methods

Data were collected from forums hosted on two websites, clusters.com and cb.com. They were a subset of discussion threads referencing “shrooms” or “LSD” between 1998 and 2005.

JK conducted fieldwork and interviews at Clusterbusters’ annual patient conferences and lobbied Congress for resources with Clusterbusters members. He also conducted audiotaped in-depth interviews with 11 key informants about their experiences as self-experimenters on the forums.

We managed data using ATLAS.ti software, and reviewed and consolidated codes to capture emerging themes and theoretical ideas. We wrote and shared memos to capture our evolving analysis.

We used pseudonyms to protect subjects’anonymity and did not correct the spelling or grammar of quotes pulled from online groups.

4.1. Self-experimentation

Flash discovered the use of psychedelics as a treatment using self-experimentation in the classic sense. He conducted a series of self-experiments using psilocybe semilanceata to determine the minimum effective dose.

4.2. Self-experimentationgoespublic

Although many people on clusters.com suggested psychedelic treatments, the community did not engage seriously with Flash’s posts until October 1999, when Tom replied to Flash’s fourth post on the topic and suggested that shrooms were chemically ‘close’ to LSD.

4.3. Theroleofcommunitysupportinexperimentalpractices

Flash’s early self-experiments fit the traditional model of “lone researcher,” but he had some social supports. After posting a message titled “Am I nuts?”, Gunner was the first to experiment with psilocybe mushrooms as medicine, and his success inspired other members to experiment as well.

The community worked towards building a shared set of knowledge about the neurochemical and physiological properties of both illegal psychedelic and legally prescribed drugs by relying heavily on information they located online and asking physicians, neurologists, headache doctors, and academics for advice.

4.4. Collectiveself-experimentationascollaborativeanditerative

Collective self-experimentation (CSE) is an interactive process involving dynamic, iterative loops in which embodied researchers design, report, and tweak their interventions based on the group’s collective experiential knowledge and insight.

Bobby’s report exemplifies how forum members engaged with failure to produce actionable information. A member suggested a better scale, but another member disagreed, saying that mode of consumption can make a real difference in “trip experience.”

4.5. ParticipationandleadershipinCSE

Flash, MantaRay, and Bob Wold were trusted leaders in the CSE community, and their assessments guided subsequent decisions about which new hypotheses ought to be tested via collective self-experimentation.

4.6. CollectiveembodimentandCSE

The forums adopted the Kip Scale, which described the intensity of cluster headache attacks on a scale from 0 to 10. Members used this scale to describe the sensations they experienced, and to help each other determine the efficacy of their treatments.

4.7. CSEasflexibleandpragmatic

CSE members experimented with dosages that caused mild to medium hallucinogenic effects, but some found that using a small amount of mushroom under the tongue could prevent cycles and abort individual attacks. This suggested that the theory that psychedelic substances “block” serotonin receptors might need to be revisited.

The group experimented with microdosing, coining the term “SPUT” to describe the technique of “small piece under the tongue”, and advising each other on how to use it and when to take it.

CSE produces pragmatic working protocols, but it is not epistemologically or even practically equivalent to the knowledge produced by clinical trials. In this case, CSE produced new hypotheses and generated research questions, but it also represented the pragmatic instability inherent in CSE.

5.Discussion

In this article, we explore how online health communities use self-experimentation to determine their treatment protocols. We find that this approach might be better called “collective self experimentation”.

Crowd-sourced experiments may differ from experimental group designs in that they involve individuals with acuteneeds, and may also be unlikely to self-organize into a traditional group experiment because of the need to control experiments with placebos.

Our analysis speaks to the benefits and risks of patient-led research, including the ability to experiment without regulatory oversight and the ability to adjust dosages easily to fit different bodies, contexts, and experience levels.

CSE entails multiple disadvantages, including operating outside of any external oversightorprotectionstohumansubjects, not including randomizationorcontrols, and leading to a Hawthorne-like effect.

6.Conclusion

Collective self-experimentation is a collaborative form of knowledge production that is enabled and facilitated by several strands of social and technological change.

CSE represents a form of knowledge uniquely suited to our technologically mediated era of healthcare. As new tools and platforms for online sociability and knowledge exchange become more widespread, CSE will evolve to overcome new challenges.