In Defence of Doing Your Own Research

What we can learn from patient activism

The slogan "Do Your Own Research" (DYOR) has become ubiquitous in certain corners of the internet. In many intellectual circles, DYOR has become something of a red flag—a rhetorical marker that often precedes the rejection of established knowledge or the promotion of misinformation. Beyond its rhetorical uses, DYOR expresses an underlying ethic of inquiry that valorises independent thinking, rejects uncritical deference to recognised experts, and expresses distrust in those experts. This distrust is not necessarily generalised across all domains—those who invoke DYOR may trust experts in some fields while questioning them in others.

A few philosophers have recently expressed significant scepticism in the value of laypersons (those without relevant credentials) conducting their own research. The core argument is straightforward: most individuals lack the necessary training, knowledge, and institutional support to conduct meaningful research on complex topics. Attempts to do so often result in false beliefs or, worse, actively harmful ones.

For example, Neil Levy argues that laypersons should not engage in what he calls “truth-directed inquiry” and should limit themselves to “exploratory inquiry”. Truth-directed inquiry—research aimed at generating new knowledge—is only appropriate for genuine experts. Laypersons should limit themselves to exploratory inquiry—research aimed at understanding the knowledge produced by experts. According to this view, laypersons should simply defer to recognised experts—those with the relevant training, knowledge, and institutional backing.

It is undeniable that independent research can go wrong—sometimes very badly wrong. But you can take scepticism about independent research too far. Critics of independent research often focus on cases where distrust in experts seems clearly unjustified—climate change denial, flat Earthers, and so on. But what about cases where distrust in recognised expert authority might be justified?

Healthcare and medicine provide a rich source of examples of justified distrust because of a history of past institutional failures. More than that, though, they provide examples where patients have made genuine contributions to medical knowledge and understanding. Importantly, these contributions extend beyond the simple “experiential knowledge” (knowledge of “what it is like”) that comes from living with a medical condition. Groups of patient activists have conducted independent research, both theoretical and applied, generating insights that have substantively contributed to biomedical knowledge and understanding. They have, for example, advanced our understanding of treatment protocols, clinical trial methodologies, and have even developed new medical technologies, all without formal scientific training.

Patient Activist Research: A Success Story

Let me start with the most celebrated case of patient activist research: AIDS activism in the 1980s and early 1990s. Steven Epstein's book Impure Science documents how AIDS activists, most of whom lacked formal medical training, played a crucial role in shaping HIV/AIDS research. These activists weren't just advocating for more research funding or raising awareness. They were challenging the very methodologies of clinical trials, pointing out flaws in research design, and actively participating in the production of medical knowledge.

For example, activists argued against the prevailing fixation on "clean" clinical trials (with strict participation criteria) and double-blind trials (where participants don't know if they're receiving the drug or a placebo). Their argument wasn't just moral—that it was wrong to deprive people of drugs that might save their lives. It was epistemological: the trials weren't actually producing the clean data researchers thought they were. As Epstein puts it:

How do researchers anticipate the actions of patients understandably anxious about the possibility that they were squandering their remaining days swallowing sugar pills? ... reports of 'noncompliance' raised serious questions about just how 'objective' the much-vaunted double-blind trials really were.

AIDS activists weren't just expressing the lived experience of having HIV/AIDS. No amount of lived experience puts you in a position to criticise the methodology of a clinical trial. They were acquiring what Epstein calls "lay expertise"—a form of knowledge that allowed them to engage with researchers on technical issues and make genuine contributions to medical understanding. By the early 1990s, established treatment activists could "speak fluently about a host of technical issues that were surfacing in research on AIDS treatments." They had become "experts of a sort" who could effectively engage with researchers, government health officials, and pharmaceutical companies.

To conceptualise this phenomenon, we can draw on Harry Collins and Robert Evans' distinction between different forms of expertise. They differentiate between "interactional expertise"—an advanced form of verbal fluency that enables understanding concepts and engaging with researchers—and "contributory expertise," which allows individuals to actively contribute to knowledge and practices within a field. Epstein's activists clearly developed high levels of interactional expertise, but the evidence suggests some went further and developed contributory expertise, as demonstrated by their substantive contributions to clinical trial practices and other aspects of HIV/AIDS research.

The distinction between interactive and contributory expertise nicely parallels Levy’s distinction between exploratory inquiry (aimed at understanding the current state of knowledge) and truth-directed inquiry (aimed at advancing the current state of knowledge). At least some AIDS activists went beyond merely understanding and engaging with medical researchers to make genuine contributions to medical knowledge and practices—moving from interactional to contributory expertise, from exploratory to truth-directed inquiry.

More Than Just a One-Off

The AIDS activist case might appear to be an exception. One reason why AIDS activists could make a contribution to understanding of AIDS in the 80s/90s was that, at least at the beginning, nobody knew much of anything about AIDS. However, the literature contains several other examples that follow similar patterns.

Take the case of the Radiotherapy Action Group Exposure (RAGE), which is discussed in an excellent book by Charlotte Williamson on patient activism. RAGE is a UK group formed in the 1990s by women who had experienced severe complications after receiving radiotherapy for breast cancer. When these women reported symptoms they suspected were due to radiation damage, they were often dismissed by doctors, even branded as hysterical. But they didn't just accept this dismissal. They formed a group, collected data, and identified patterns: some hospitals in certain years had much higher rates of severe radiation damage than in others. This suggested that the issue wasn't with individual patients' sensitivity to radiation (as many doctors claimed) but with differences in dosing, timing, or technique.

Their work prompted the Department of Health to fund an audit. But when the results came back with some significant issues, Margaret King, a member of RAGE, wrote a detailed critique highlighting errors in the data, gaps in the literature review, and conclusions that weren't warranted by the evidence. By the mid-1990s, radiotherapy practices in the UK had improved, and there's some evidence that this was partly due to the efforts of RAGE.

Or consider the French Muscular Dystrophy Association (AFM), founded in the late 1950s by families of people with muscular dystrophy. From its inception, AFM pursued a strategy of both providing daily care and support and funding and directing research. They emphasised the complementarity of patients' experiential knowledge and specialist medical knowledge, showing that these two forms of knowledge aren't contradictory but can enhance each other.

More recently, the #WeAreNotWaiting movement in the type 1 diabetes community has led to innovations in diabetes management technology. Members of this community—typically people with type 1 diabetes who have technical skills but no formal medical training—have repurposed and re-engineered continuous glucose monitors, insulin pumps, and various apps to make them more accessible and useful for patients. Most impressively, Dana Lewis created an open-source automated insulin delivery system, essentially building an artificial pancreas that's freely available to anyone who needs it.

It's Not About Lone Wolves

A prevalent misconception about independent research is that it is an endeavour undertaken by isolated individuals attempting to "think for themselves" without external input or guidance. This conception misrepresents how knowledge production typically functions. Social epistemologists have long emphasised that knowledge production is inherently a social process. Bodies of knowledge—particularly technical knowledge in fields like medicine or science—emerge from communities working in concert rather than from individuals working in isolation.

As Nathan Ballantyne, Jared Celniker and David Dunning explain:

In one literal sense of 'do your own research', there is no way to do that. Doing your own research is like driving your car on your own highway – impossible. In the same way drivers depend on the planners, surveyors, engineers, and construction crews who design and build the highway, your competence to do research depends on what we call scaffolding – again, a set of facts about cognition, embodiment, technology, society, and culture that support perception, presupposition, thought, and action behind research. No matter who you are, doing your own research means relying on some scaffolding and thereby on the social world.

While individuals can produce bits of knowledge on their own—observing that it's raining or proving a mathematical result in isolation—bodies of technical knowledge are generally produced by communities working together. These communities pool resources and develop norms governing information exchange, evidence gathering, and knowledge production. Some norms govern testimony and deference within the community. For a community to be epistemically functional—producing valuable knowledge for its members and others—these norms must be followed and enforced to some extent.

The lesson to take from the examples of patient activism isn't that individuals without credentials can occasionally make important contributions to knowledge (though this does happen). Rather, it's that communities of people without traditional expert credentials can, under appropriate conditions, produce valuable knowledge.

These communities might be termed "research collectives." A research collective resembles a traditional research community (e.g. a scientific community) in several ways: both are communities of inquirers that produce bodies of knowledge, both establish structures for member training, both develop norms governing knowledge production and sharing, and both create venues for knowledge dissemination.

However, there are also significant differences. Research collectives operate outside traditional research institutions, and their members typically lack relevant training and credentials in the fields they investigate. They rarely have the luxury of spending years training members in the way traditional research communities do. Additionally, while traditional research communities often focus on "pure research" or "knowledge for knowledge's sake," research collectives typically concentrate on research directly relevant to their members' interests. They often pursue this research precisely because they perceive that traditional research communities are neglecting it.

The patient research collectives examined—AIDS activists, RAGE, AFM, #WeAreNotWaiting—exemplify an ethic of inquiry that values doing one's own research rather than simply deferring to recognised medical experts. Because these are collectives rather than individuals, what's valued isn't isolated individual research but a community of inquirers—whose members typically lack standard expert credentials—investigating matters of concern to them, producing new knowledge, and translating that knowledge into actions benefiting collective members.

Why This Matters

Critics of independent research make a valid observation: individuals operating in isolation, without the cognitive scaffolding that membership in a research community provides, are unlikely to produce valuable knowledge. It is also fair to say that there are also communities of independent researchers who are unlikely to produce valuable knowledge (imagine the wackiest bunch of YouTube conspiracy theorists you can think of).

What this overlooks, though, is the existence of research communities outside traditional institutions that can provide comparable cognitive scaffolding. These patient research collectives establish structures that serve functions similar to those found in traditional research communities: facilitating competent research, enabling contributions to medical knowledge, and sometimes even supporting the development of new technologies.

For example, Epstein documents how AIDS activist communities provided biomedical training, organised academic-style conferences, attended scientific conferences, and published in periodicals and scientific journals. While not identical to the scaffolding provided by formal scientific training, these structures created an epistemically functional community capable of producing valuable research and advancing HIV/AIDS knowledge. Similar observations apply to the other activist groups I have discussed.

It would of course be a mistake to idealise these communities, which contain their own internal problems and tensions. Epstein observes that within AIDS activist groups, a division emerged between "lay expert" activists and "lay lay" activists—a division frequently structured along lines of gender, race, class, and education. Individuals with greater social capital—predominantly white, male, and highly educated—tended to occupy positions as "lay experts" with correspondingly greater power and influence within the activist community. Similarly, research indicates that the diabetes online community exhibits significant demographic skews: 91% of users of open-source automated insulin delivery systems come from Europe or North America, and 83% of adults in the community possess at least a first degree.

These internal hierarchies within patient research collectives frequently mirror broader social hierarchies, raising critical questions about the distribution of participation in knowledge production, even within these ostensibly more democratic spaces. Such problems, while significant, do not invalidate the substantial contributions that patient research collectives have made to medical knowledge.

Beyond Simplistic Views of Expertise

The phenomenon of patient research collectives challenges the idea that knowledge production as the exclusive domain of credentialed experts operating within traditional institutions. It indicates that the landscape of expertise is more complex than some assume.

This complexity invites us to reconsider how we conceptualise expertise itself. Following Collins and Evans, we can distinguish between realist and relational (or deflationary) views of expertise. Both views acknowledge expertise as a social status afforded to those meeting certain criteria established through social negotiation and agreement. However, the views diverge in that the relational view reduces expertise to this social status, while the realist view maintains that expertise has a substantive basis in the skills, knowledge, and competences supposedly possessed by those granted expert status. For realists, it's coherent to describe someone as genuinely being an expert despite lacking recognition as such, whereas this makes less sense under the relational view.

The case studies discussed suggest a complex relationship between the social and epistemic aspects of expertise. AIDS activists, RAGE members, AFM participants, and #WeAreNotWaiting innovators all developed forms of expertise that enabled genuine contributions to medical knowledge and technology. Yet they typically lacked formal recognition as experts. This disparity between epistemic capability and social recognition highlights one important aspect of the politics of knowledge—the complex web of power relations that determine whose knowledge claims receive recognition and legitimation.

This does not imply a wholesale rejection of expert knowledge or advocate for generalised distrust of established institutions in favour of isolated independent research. Rather, it suggests the need for a more nuanced understanding of expertise and independent research.

Recognised experts sometimes err in their judgments. They overlook significant questions or perspectives. The incentive structures within traditional research institutions sometimes fail to align with the needs and interests of those most affected by the issues under investigation. In such circumstances, patient research collectives can fulfil a crucial function in advancing knowledge and developing alternative approaches.

The question, then, is not whether independent research should be categorically embraced or dismissed, but rather: What forms of independent research generate value? Under what conditions? With what types of social and institutional support? These questions offer more productive avenues for inquiry than sweeping generalisations about the merits or demerits of independent research.