Most often, we only become experts on a topic only once it directly affects us. For instance, you may have found yourself with a clogged drain on a Sunday evening. Unable (or unwilling!) to seek professional help, you might do an hour or two of research before becoming your own semi-professional plumber. Just learning how to simply loosen a bolt and clear blockage can require a lot, like discerning who is a trusted expert, learning a handful of new terms, and even acquiring new tools. Sometimes, even then, we end up calling in the professionals to finish the job we started. So, what about when it comes to something as central and complicated as a burgeoning health concern?

“Most often, we only become experts on a topic only once it directly affects us.”

The “Do Your Own Research” (DYOR) movement has been around since the early 1990s — though its popularity has increased tenfold in the years following the COVID-19 pandemic. The phrase was originally coined by Milton William Cooper, a conspiracy theorist whose thoughts on aliens and mind control led him to a fateful end. At its worst, the movement has become a breeding ground for misperceptions and paranoia-driven attempts to uncover a truth that institutions are supposedly hiding from us. At its best, it can be an empowering call for wider and deeper engagement with sources, fact verification, and critical, individualized thinking that can save lives.

Dr. Brian Koffman, MDCM, MSEd, is a retired doctor, clinical professor, and co-founder of the CLL Society which serves chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma cancer patients and caregivers, in part through education. Koffman dedicated himself to the cause of CLL after his own diagnosis in 2005. “As a medical doctor turned patient, I was diagnosed with a rare cancer. […] By becoming an expert through my research in my slow-moving disease, I quickly realized when I should follow the lead of my healthcare team and when I needed to push back. My research saved my life,” says Koffman.

“By becoming an expert through my research in my slow-moving disease, I quickly realized when I should follow the lead of my healthcare team and when I needed to push back.”

– Dr. Brian Koffman, MDCM, MSEd, co-founder of the CLL Society

Doing your own research doesn’t need to be fueled by distrust. In fact, it’s almost impossible to extract yourself from the guidance of experts since the common person won’t be staging controlled experiments and prescribing their own medications. Dr. Mitzi Krockover, MD, is a board-certified internist and advocate for women’s health, with diverse roles across multiple organizations — including as producer of the patient education podcast Beyond the Paper Gown. For Krockover, “Personal health research is valuable for making informed decisions about care.” But, she cautions us that “since the internet provides general health information, it’s essential to discuss findings with healthcare professionals who can interpret information within the context of your specific medical history.” As much as you might come to know about an isolated factor, understanding the complex interaction with other factors is exponentially harder.

I spoke to both Dr. Koffman and Dr. Krockover — and did a bit of research myself 😉 — on how to approach scientific and medical knowledge when you don’t have a background in those fields. Below, I’ve unpacked some strategies for identifying personally relevant material that can make a real difference in your health — and how to speak about it with your healthcare providers so you can actually implement what you’ve found. After all, none of us are alone in the task of understanding an evolving body of knowledge or in determining our health.

Start by deciding your research question(s).

When I asked Koffman what he sees as the first step for doing your own research, he invoked a quote attributed to Einstein.

“If you figure out what exactly you’re looking for, and organize your research by that, you’ll be less likely to be overwhelmed by the sheer amount of information available.”

“’If I had an hour to solve a problem and my life depended on the solution, I would spend the first 55 minutes determining the proper question to ask.'” Koffman continued, “The first step is determining what your goal is in doing the research. What is it that you hope to achieve? What do you want or need to know? Or is it a case of not knowing what you don’t know?”

For example, you might be more interested in the etiology of a condition or the outcomes of experimental treatments. If you figure out what exactly you’re looking for, and organize your research by that, you’ll be less likely to be overwhelmed by the sheer amount of information available. (And you won’t waste your time reading or listening to anything irrelevant.) You may have a number of questions — so sharpening those and focusing your research into different buckets will be helpful there, too.

Consider when to do your own research.

Not every medical condition can or should be researched with the same voracity. This will depend on your personality and your experience in the healthcare system, too. Koffman offers some helpful advice: “I recommend everyone carefully assess how much digging they want to do. Some folks want to ‘outsource’ their worries and research to their healthcare team, trusted friend, or relative. Some want to become experts in every minute detail. Either path can be correct. Be honest about your own eagerness and abilities.” Planning according to your personality will help you be more realistic.

“Be honest about your own eagerness and abilities.”

– Dr. Brian Koffman

There are also some cases where you might not have the time to do all the research you’d like. Koffman continues, “If one is running a high fever and facing a fast-moving common infection, trusting others might be a wise course of action. Compare that scenario to a slow-moving or indolent rare cancer or other chronic illness where you have plenty of time to research and where expertise might be hard to find. No one has more skin in that game than you do. In such cases, you should start carving out some time to build your own knowledge base.”

Consult reputable sources, and acknowledge their limitations.

Krockover recommends starting with “consumer-oriented resources from respected sources to establish a foundation of information.” That includes institutions like the Mayo Clinic, Cleveland Clinic, and Johns Hopkins Medicine which offer reliable, evidence-based information. There are also non-profit organizations like the American Heart Association, the American Cancer Society, and Koffman’s CLL Society which provide expert-vetted material. (Tip: Many of these websites will end in .org). She notes that specialty societies such as the American College of Gynecology usually provide consumer education, too.

For nonprofit sources, Koffman suggests: “Generally, the more focused [it] is on one topic or disease state, the richer it is as a source of research. Check that their materials are reviewed or authored by healthcare professionals. Do they provide links to the source materials that were published in peer-reviewed journals or presented at major conferences?” You can follow that chain as a way to continue pursuing answers, too!

“Generally, the more focused [it] is on one topic or disease state, the richer it is as a source of research.”

– Dr. Brian Koffman

Koffman also offers that, “Government sources (.gov) and academic (.edu) can be robust repositories of reliable information to get one started. While there are many high-quality videos and podcasts out there, it’s probably wise to start with trusted websites first. Once you develop your chops at sniffing out who the real experts are, then search out the best audio and video sources.”

Both experts note that you should be critical of sources that combine health information with product marketing. If you come across a site that is selling something, overpromises, or is dogmatic, you’ll want to cross-check that material against other trusted sources like the ones mentioned above.

Pay attention to important details.

Once you’ve started your research, you’re bound to come across any number of randomized controlled trials testing new interventions and treatments. Krockover offers some advice on how to understand the outcomes predicted there based on your personal situation: “[T]here are basic steps you can take to evaluate the quality of a study. Larger populations generally yield more reliable results — thousands is better than dozens. Consider who was studied; a study on white men might not be relevant if you’re a Black woman. Examine who funded the study and whether there could be conflicts of interest. Don’t rely on a single study in isolation; look for patterns across multiple studies.”

And, always verify that information is current since medical knowledge evolves quickly!

“Always verify that information is current since medical knowledge evolves quickly!”

If you compare various studies and you’re unable to reach any conclusions, develop some questions to bring to your healthcare provider. With the right person (doctors, nurses, and so on are people after all!), it could be the start of an engaging and mutually beneficial conversation.

Don’t get discouraged!

As you go deeper, remind yourself that experts in medicine and science have usually spent at least a decade (often more) becoming fluent in the language and concepts of their fields. While amateurs offer a fresh perspective and different kinds of knowledge, learning a new discourse is inherently difficult. (The sight of a lengthy and jargon-filled title accompanying your standard journal article will be enough to deter some from this whole project, iykyk!)

“Don’t expect to ‘get it’ when first exposed.”

Koffman reassures us that, “Learning any new topic is an iterative process. Don’t expect to ‘get it’ when first exposed. Reread and be kind to yourself, as if you were guiding a young student in a subject they had never seen before. Each disease has its own vocabulary and acronyms. It takes time to learn them. Don’t be discouraged.” Have patience for yourself as a patient!

Finally, if it sounds too good to be true, it probably is.

If you start to feel that everything is coming up roses, remember to temper your expectations. Krockover notes that “confirmation bias — only looking for information that matches what you already believe — can limit understanding. Challenge yourself to look at different viewpoints to get the full picture.”

With this in mind, you might want to reframe your research questions and double-check the details of the studies you’ve consulted.

“It may help to consider your research as directional rather than providing The Answer to your problems.”

It’s important to remain optimistic, but overblown expectations can lead to deeper disappointment. Magic cures rarely exist, and often the newest promising interventions see diminishing returns.

It may help to consider your research as directional rather than providing The Answer to your problems. Medical intervention is often iterative and multi-pronged so allow your findings to inform rather than determine your health plan.

Ultimately, the process of doing your own research should lead to you feeling more empowered as a patient. If you start to find it overwhelming, reconsider your strategies. (Especially since stress has a major impact on your health!) Remember this advice from Krockover: “Approach health research methodically while recognizing its limitations. Maintain perspective on the scope of personal knowledge, and consult healthcare professionals for medical decisions.” 

Finding interlocutors you trust — whether they’re the professionals conducting trials, educators, or your healthcare team — is an essential part of exploring and implementing the outcomes of your research. 💛

Ashley D’Arcy is the Senior Editor at The Good Trade. She holds an MA in Philosophy from The New School for Social Research and has contributed to esteemed outlets such as The Nation, 032c, and Yale School of Management’s Insights where she’s leveraged her expertise in making complex ideas accessible to a broad audience. In addition to her editorial work, she is training as a psychoanalytic mental health professional and provides care to patients in New York City. Ashley also explores sustainable fashion, clean beauty, and wellness trends, combining thoughtful cultural critiques with a commitment to mindful living.