Mapping the Landscape of DoitYourself Medicine

Introduction

Citizen science encompasses a wide range of scientific activities that involve participation from the general public (Eitzel et al. 2016; Haklay et al. 2021; Hecker et al. 2019). While many citizen science endeavors are related to environmental and ecological sciences (Kullenberg and Kasperowski 2016), a subset are specifically related to health and biomedical research. These include lay individuals conducting biological research, individuals contributing health data in novel ways to scientific projects, and increased patient engagement in biomedical research, among others (Guerrini et al. 2019; Trejo et al. 2020; Wiggins and Wilbanks 2019).

This essay takes as its focus one particular form of biomedical citizen science: patients who have endeavored to advance therapeutics for their own condition, often replicating experimental, but as-yet unavailable, therapies in their own homes. For example, in what has become known as “do-it-yourself” (DIY) brain stimulation, individuals suffering from depression build at-home electrical headsets using nine-volt batteries, mimicking an experimental neuroscience technique used in scientific laboratories (Jwa 2015; Wexler 2016). In DIY fecal transplantation, those with intestinal disorders like C. Difficile source stool from donors and transplant it into themselves with the aid of blenders and enemas, replicating novel clinical research (Ekekezie et al. 2020). In DIY hormone replacement therapy, transgender individuals source and self-administer hormones outside the physician’s office (de Haan et al. 2015; Rotondi et al. 2013). In DIY diabetes movements, patients have hacked together an artificial pancreas from their glucose monitors and insulin pumps (Burnside et al. 2020; Jennings and Hussain 2020). The rise of these DIY medical movements has been fueled by the internet, which has laid the foundation for online health communities and has allowed patients to gain greater access to information about medical research as it is ongoing.

To date, scholarship on DIY medical endeavors has largely been relegated to discussion within medical specialties (e.g., neurology, infectious disease, endocrinology). In this essay, however, I conceptualize DIY medicine as a cross-cutting social phenomenon that has emerged independently across multiple medical domains, yet shares common features. First, I provide background on DIY medicine and how the term has been used contemporarily. Second, I describe several case studies of DIY medical movements in which scholars have documented loose-knit communities of individuals coming together to innovate, replicate, or treat themselves outside of clinical settings. Third, I suggest that four key factors set the stage for any DIY medical movement: frustrated patients, lack of access to an effective treatment, online social media outlets, and the availability of a therapeutic that is relatively easy to create or access. Finally, I conclude by discussing the outlook for the future of DIY medicine.

What is Do-it-Yourself Medicine?

In citizen science, the term “citizen” modifies the word “science” to reflect that who is doing the science represents a departure from societal norms: it is lay individuals, not trained scientific professionals. Similarly, in do-it-yourself medicine, the term “do-it-yourself” signals that lay individuals, not medical experts, are practicing medicine. This modifier (DIY) is therefore laden with meaning, conveying both what the societal norm is regarding the expertise required for an activity as well as how a specified practice departs from it. For example, we would assume that one speaking of doing a “DIY bathroom remodel” was not a professional contractor, but rather a layperson carrying out a remodeling project, perhaps with the aid of YouTube videos. But a professional contractor—with expertise in home remodeling—would not speak of a “DIY bathroom model” as the practice would not be DIY. By the same token, it would be paradoxical to use DIY in reference to activities that are not typically viewed as requiring expertise, such as “DIY housework” or “DIY laundry.”

The term “do-it-yourself” has its roots in several movements across the past century (Ferretti 2019). Cultural studies scholar Grewe-Salfeld (2021) has pointed to three “intersecting waves” of DIY, including a trend toward home improvement in the 1950s and 1960s, its usage in punk counterculture in the 1980s and 1990s, and the contemporary Maker Movement, which prioritizes creative physical activities. Some citizen science activities, particularly in the realm of biology, have been referred to as “DIY science” as they combine an ethos of open science, the culture of the Maker Movement, critiques of mainstream science, and a hacker culture (Delfanti 2013; Landrain et al. 2013).

While DIY medicine shares commonalities with the above movements—particularly in its existence outside of the mainstream—it also has its own distinct history. Centuries ago, medicine was not exclusively in the realm of the physician: it was viewed as common sense knowledge passed down through families (Rosenberg 2007; Starr 1982). In rural America in the eighteenth and nineteenth centuries, there was an emphasis on self-reliance for medical needs. Home medical guides, such as John Tennant’s Every Man His Own Doctor (1736), William Buchan’s Domestic Medicine (1771), and Gunn’s Domestic Medicine (1830), offered detailed instructions for the lay individual on how to treat various diseases. These books and other publications providing at-home medical advice have been referred to as DIY medicine, to reflect the practice of medicine in the absence of a trained physician (King 1967; Tomes 2016).

In contemporary usage, the term DIY has been applied in an ad-hoc manner to medical practices by journalists, scientists, clinicians, academic scholars, and even users themselves. Medical endeavors that have been described as DIY have included efforts to 3D print prosthetic limbs (Manero et al. 2019; Parry-Hill 2019); the practice of dentistry and orthodontics outside of a healthcare provider’s office (Carter and Stokes 2021; Westgarth 2021); the creation of low-cost hearing aids and user modifications to existing hearing loss technology (Brewster et al. 2019; Lesté-Lasserre 2020); an open-source version of an epinephrine auto-injector called the “Epi-Pencil” (Condliffe 2016); the release of instructions for synthesizing abortion pills (Koebler 2022); homemade COVID-19 healthcare supplies (Richterich 2020); COVID-19 vaccines developed outside of clinical trials (Caplan and Bateman-House 2020); and efforts to develop open-source versions of insulin (Gallegos and Peccoud 2018), among others.

DIY medicine is most commonly used in reference to the practice of medicine that exists outside the mainstream, mostly with regard to who is doing it (i.e., those without professional medical training), but occasionally also regarding how it is being done (i.e., outside of typical medical or scientific clinical or research settings). For example, a BBC article about surgeons operating in remote settings using improvised surgical tools referred to the practice as “DIY medicine,” even though the individuals described were all trained medical professionals (Gorvett 2016). When the term DIY is used by the media in reference to medical techniques, there is often a sensational appeal. In contrast, professional scientists, clinicians, and scholars sometimes use the term to delineate boundaries between the “correct” practice of medicine and DIY practices that may be “unsafe” or “dangerous” (ADA 2018; Wurzman et al. 2016). Along these lines, even practices that involve consumers purchasing products from companies, such as direct-to-consumer genetic and medical tests, have sometimes been described by clinicians and scholars as DIY (Borry, Sénécal, and Knoppers 2016; McClurg 2018).

Although many of the abovementioned applications of the term DIY to medical practice are one-off usages, typically describing an isolated case, this essay takes as its focus instances of DIY medicine that represent more significant and sustained social phenomena, in which loose-knit communities of patients work to replicate or advance therapeutics for their own condition. The examples mentioned in the Introduction—of DIY neurostimulation, DIY fecal transplants, DIY hormone replace therapy, and the DIY artificial pancreas system—are all cases where the term DIY has been used consistently over time by the media, scholars, and even users themselves to describe their practices.

These DIY medical endeavors differ from other kinds of biomedical citizen science in several ways. First, unlike other initiatives that aim to increase patient engagement in traditional scientific knowledge production, these DIY medical endeavors are entirely disconnected from mainstream or establishment research. Second, those involved in DIY medicine are usually patients (or their caregivers) and therefore have a strong personal motivation to improve their own quality of life; this sets them apart from biomedical citizen science endeavors like DIY biology, in which participants are motivated by interests in open science and educational experimentation (Roosth 2017; Wexler 2017b). Third, in these cases of DIY medicine, participants use their own bodies as sites of experimentation, unlike other biomedical citizen science that involves the contribution of health data or research time. Fourth, while DIY medical movements sometimes emerge from online patient communities, they move beyond mere discussion groups in that they are oriented toward developing and utilizing a therapeutic intervention.

Multiple instances of this kind of DIY medicine have arisen independently across multiple medical domains, yet appear to share common features. The remainder of this essay therefore focuses exclusively on these DIY medical movements, which move beyond single cases of DIY medicine and represent the sustained efforts of a group over time.

Examples of DIY Medical Movements

This section describes four case studies of DIY medical movements in which there exists significant independent documentation (by scholars and journalists) of a loose-knit community of individuals coming together to innovate, replicate, or treat themselves outside of clinical settings, often mimicking advanced experimental therapies that remain inaccessible to the general public. The case studies described here are not intended to be a comprehensive representation of the entirety of DIY medical movements. Indeed, other endeavors may be considered DIY medicine, such as amyotrophic lateral sclerosis (ALS) patients self-administering experimental treatments (Wicks et al. 2011) and cluster headache patients developing and innovating psychedelic therapeutics (Kempner and Bailey 2019). However, the DIY movements depicted here (and summarized in Table 1) have all been consistently referred to as DIY medicine by independent observers and users themselves, and even the brief sketch of their features provided here reveals notable commonalities.

Key factors for DIY medical movements

Understanding the social contexts that give rise to DIY medical movements can help predict where and how they may arise in the future. Here, I suggest that four key factors set the stage for the emergence of a DIY medical movement. First, there is typically a population of individuals who are suffering from a disease, disorder, or condition. These individuals are often frustrated or dissatisfied with their existing care or lack of effective therapeutics, or the pace at which an experimental therapy may trickle down to them; others are desperate for relief from their conditions. They therefore have a strong intrinsic motivation to seek out a therapeutic for themselves or their loved ones.

The second key factor is an ability to rapidly communicate information: As noted in the Introduction, the internet has provided a means of accessing information about medical research, as well as allowed for the development of social media and online fora that have fostered the growth of patient communities. Indeed, the DIY medical movements described above have all centered on online patient fora—typically on Facebook or Reddit—where users can quickly share and exchange information. The ability for rapid, multi-directional information exchange sets contemporary DIY medical movements apart from the one-way publication of medical information offered by home medical books and magazines of previous centuries (Greene 2016; King 1967).

The third key factor is that individuals lack access to a given therapy or procedure. Access barriers can take different forms: a therapy or innovation may be experimental (i.e., being studied in laboratory settings) and as-yet unapproved, such as in the case of DIY brain stimulation; the technology may also not exist, such as in the case of the closed-loop artificial pancreas systems. Even if a therapy is approved, individuals may be unable to access it due to cost or lack of local availability, such as in DIY HRT and DIY FMT. Other reasons may include hesitancy to access care, such as in DIY HRT, where transitioning individuals may fear discrimination or may have had prior negative experiences with healthcare providers.

Fourth, for a DIY movement to gain traction, the therapeutic should be relatively easy for individuals to access or create. For example, in DIY neurostimulation, users were able to build at-home electrical brain stimulation devices using simple parts sourced from electronics stores. However, the home use of other kinds of neurostimulation—such as transcranial magnetic stimulation—never took off, likely because their construction is far more complex. DIY FMT involves sourcing stool, a material that anyone can access, and online pharmacies readily provide hormones to those interested in DIY HRT. It is likely that the greater the accessibility or replicability of a therapeutic, the more widely a DIY medical movement may spread.

Other characteristics of DIY medical movements are not essential features, but still bear mentioning. For example, there often arises an informal marketplace where purveyors sell supplies related to the DIY activity, such as neurostimulation devices and “brain device kits” offered by entrepreneurs in the realm of DIY neurostimulation (Wexler 2015); individuals selling their own stool in DIY FMT (Ma et al. 2017); and online pharmacies offering black-market hormones for those interested in DIY HRT (Branstetter 2016). In addition, DIY medical movements are often controversial as they raise challenges for clinicians, professional medical societies, and regulators, who struggle with how to navigate the home use and self-administration of therapies that have typically remained behind the closed doors of the medical clinic. Thus, the emergence of a DIY medical movement may be accompanied by publications advising against a DIY practice, such as commentaries and essays from individual physicians, position papers and statements from professional organizations, and warnings from government regulators.

Finally, it is worth noting that while DIY medicine may be an alternative practice that exists outside mainstream medicine, its users appear to have a strong affinity for science and medicine: One study of DIY neurostimulation found that users were “early adopters of technology with a penchant for reading scientific articles” (Wexler 2018), and a survey of users of automated insulin delivery systems found that 45% of respondents had a professional background in science or medicine (Braune et al. 2021). By contrast, users of complementary and alternative medicine (CAM) and those who are vaccine-hesitant tend to have a more negative view of mainstream medicine, fearing that conventional medical interventions may be harmful (Ernst 2001). While online surveys of users of DIY neurostimulation, DIY FMT, and DIY diabetes have found that users tend to be white, highly educated, and of higher socioeconomic status (Ekekezie et al. 2020; Wexler 2018), the population of users of DIY HRT does not appear to share these same demographic characteristics (de Haan et al. 2015; Sanchez, Sanchez, and Danoff 2009).

The future of DIY medical movements

Positioning DIY medical movements within the framework of the four abovementioned factors can yield deeper knowledge of when the next DIY medical movement might occur. For example, the recent United States Supreme Court decision in Dobbs v. Jackson, which paved the way for states to reduce abortion access, portends a potential DIY abortion movement. Three key factors are apparent: frustrated and desperate patients, barriers to access, and the ability to exchange information on online fora. The fourth factor—an abortion method that is relatively easy to access or replicate—may already be present: a procedure known as menstrual extraction was developed in the 1970s and involves the use of a mason jar, a tube, and a syringe (Baker 2022; Chalker and Downer 1996; Marty 2019). The surge of interest on social media for menstrual extraction (Dawson 2022) may have the potential to spread into a DIY medical movement in locations where abortion is restricted and travel to other states may be difficult.

The COVID-19 pandemic also contained many of the key factors of a DIY medical movement: patients who were fearful of contracting disease, the ability to communicate information online, and access barriers (i.e., the lack of an effective therapeutic or preventative). Thus, when media reports emerged of a potentially beneficial therapeutic, hydroxychloroquine, that was relatively easy to access, individuals began to source and self-administer it, resulting in at least one death (Neuman 2020). Similarly, individuals fearful of contracting COVID-19 began to develop and test DIY COVID vaccines, and even published a guide on how to make vaccines at-home (Guerrini et al. 2020). However, DIY COVID-19 vaccines never gained widespread traction, likely due to the difficulty of creating the vaccine, lack of data indicating efficacy, and the development of a commercially available vaccine.

The above framework can also help conceptualize related phenomena that may be similar to DIY medical movements. For example, there are many online groups of patients who are frustrated by their quality of care and the lack of effective therapeutics for their condition; in many cases, however, drugs that are being tested in clinical trials for these conditions are synthesized exclusively by pharmaceutical companies and are unavailable to patients. The frustration at the lack of access to these drugs has resulted in the “right to try” movement, where patients and advocacy groups have campaigned for alternative pathways for earlier access to experimental pharmaceuticals (Folkers, Chapman and Redman 2019). However, the “right to try” movement differs from DIY medical movements because in the former case, a therapeutic is manufactured by a single company and is therefore not easy to access or replicate—it lacks the fourth key factor. Thus it is unlikely that DIY medical movements will arise for experimental therapeutics involving novel pharmaceutical drugs.

In theory, DIY medical movements should have the ability to advance scientific knowledge in some way. However, apart from the DIY diabetes movement, few have successfully contributed to science in a significant manner. Although further research is needed to examine the definitive reasons for this, here I offer several points for consideration. First, patients in DIY medical movements appear to be motivated by improving their own condition, not generating new scientific knowledge. Thus, if their DIY practices are successful—and there is evidence of high rates of satisfaction across DIY neurostimulation, DIY FMT, and DIY diabetes (Wexler 2018; Ekekezie et al. 2020; Palmer et al. 2020)—individuals may not be motivated to take added steps to gather, share, and analyze their own data. Second, there are difficulties in producing valid and reliable data when DIY practices vary considerably, such as in DIY neurostimulation and DIY FMT, where there are no standardized dosages or established methods of administration. Therefore, the ability to compile and compare data beyond anecdotal n-of-1 accounts may remain limited.

Third, a high level of group organization and leadership appears to be necessary to generate data that can be viewed as legitimate by mainstream science. The DIY diabetes movement has been a notable outlier in this respect, collecting, analyzing, and publishing their data in scientific journals. Fourth, for community-generated data to be published in academic journals, individuals involved in generating or analyzing the data need training in the norms of academic science writing—or they must partner with professional scientists. Here, too, the DIY diabetes movement has shown remarkable aptitude, forming collaborations with scientists and physicians, and publishing co-authored articles (e.g., Burnside et al. 2022). Further research to understand the success of the DIY diabetes movement may be instructive for other DIY medical endeavors.

Fifth, because healthcare providers and professional medical societies typically view DIY medicine as dangerous or unsafe, DIY medical movements may face significant barriers to making progress. Even physicians who may see the value in collecting crowdsourced data may be hesitant to get involved with DIY medical movements, either due to fears of being associated with a fringe movement or due to concerns about liability (i.e., in terms of providing medical advice to patients or assisting them with procuring supplies). Thus, unlike other areas of citizen science where scientists form partnerships with lay individuals, there is often a rift between physicians and participants in DIY medical movements.

Conclusion

The four factors outlined in the paper—frustrated patients, online fora, access barriers, and the ease of creation or acquisition of the therapeutic—are all key factors that set the stage for the creation of a DIY medical movement. For clinical indications that lack an effective treatment, and for which a therapeutic device or procedure is relatively easy to create or access, it is conceivable that a DIY medical movement will emerge, almost certainly centered on an online social media outlet. As noted above, the chances of DIY medical movements forming around new drugs are low, due to the difficulty in accessing or synthesizing a novel pharmaceutical.

DIY medical movements will almost certainly continue to raise controversy, as the spread of information, particularly on the internet and via social media, cannot be readily restricted. Furthermore, government agencies such as the FDA regulate the sale of medical products across state lines—not what individuals do to their bodies in the privacy of their own homes. Additional research is therefore needed to study the most beneficial methods for clinicians, professional societies, and regulators to address the challenges raised by DIY medical movements.

Finally, DIY medical movements have shown promise for those who need them most—patients who are frustrated with the perceived inadequacy of healthcare and the barriers to accessing effective therapeutics. While some DIY medical movements have not made significant contributions to science, the DIY diabetes movement has been a notable outlier in terms of its level of organization, ability to gather and publish data, and to partner with scientists. Further research to understand the features that have led to its success may yield strategies for future DIY medical movements to become partners, rather than foes, with physicians and scientists.