“OMG, am I dying?”
“I read that this vaccine is dangerous”.
“I want to try this new supplement, does it work?”
“Is this normal, or. . .”
Have you ever put one of these queries into a search engine? Was it helpful? I get lots of questions about health information that folks have run across online. It can be great to read up and educate yourself, but it can also be really hard to tell what’s legitimate, what’s relevant, and what’s not.
What started out as a well-intentioned fact-finding mission can quickly spiral out of control as you try to make sense of the stew of opinions, science, sales pitches, and general noise that is in the online health space. Before we go any further, a disclaimer: nothing you read online is ever a substitute for personalized, professional medical advice. If you are experiencing an emergency, you should always seek medical care from a professional, not from an online search.
OK? Good. Now, let’s go through some of the places you might land when you’re googling health topics and identify the best ways to use what you find.
University and government sites
If you are looking for solid, reliable, mainstream information about a health condition, seek out a university or government sites (.edu or .gov). National charities associated with a particular condition (like the national Eczema Association or Crohn’s & Colitis Foundation) are also usually good sources.
You can use these to learn the background and basics of disease and to understand general treatment options. Keep in mind that there are limitations to applying this information to yourself without additional context or expertise.
Not everything that’s generally true about the topic will be relevant to you. Overall, trust these sources as generally accurate but not tailored to you.
These are great places to find personal narratives from individuals. It can be helpful to share experiences and build community with other patients. This can be really validating and can also sometimes uncover patterns and new information that you might not have thought of or noticed.
However, this kind of forum can also spread misinformation when people generalize their experiences to apply to everyone. When you are only considering a handful of people, you can’t truly know what’s related to a medical condition or treatment and what’s not.
Scientific evidence is how we determine whether treatments are safe as well as whether they work, and this means systematically comparing groups of people. Another issue with online health communities is that just like our bodies can respond well to the placebo effect by improving, we can also be influenced by our expectations that things won’t go well — this is sometimes called the “nocebo” effect.
So absolutely, communicate with other people to share experiences and frustrations, but keep your common sense intact. Make sure that if you’re going to try something new, it doesn’t carry risks that you might not have thought about. This might mean asking a healthcare professional about it, especially if you’re going to try a drug or supplement with the hopes of treating a medical problem.
The bottom line is, value others’ experiences and let them help you think about your own, but do not assume that what works for others is definitely right for you.
Want to hear your doctor’s best-exasperated sigh? Mention that you found something on WebMD. There’s a disclaimer on the symptom checker page on WebMD that reads “this tool does not provide medical advice”. Please heed this warning.
The two major pitfalls of WebMD and other symptom-checking sites are that it gives you a worst-case scenario, and it can lead you to anchor on a particular idea that’s hard to let go of if it turns out to be incorrect. I searched “headache in the morning” just now, and the list it gave me included “cerebral hemorrhage” and “pneumococcal meningitis” along with a lot of other stuff. Of course this will freak you out!
But those things could be effectively ruled out by some quick screening questions from someone who knows what they’re doing. If you’re thinking “brain tumor” and your doctor says to just drink more water and pop an ibuprofen, it’s easy to feel like you’re not being taken seriously. This doesn’t necessarily mean your doctor isn’t listening! They are able to interpret your symptoms in context in a way that you may not, and their expertise is why you went to see them in the first place.
You’d be better off skipping the google search, starting with some basic self-care, and being on the lookout for symptoms that are really and truly unusual or distressing for you. Look for things that are severe or persistent. This means knowing your body and what’s really “out of range” for you. Most little body quirks aren’t concerning despite what WebMD might come up with. If you choose to check your symptoms online, try not to fixate on the rare and serious things. There’s a saying in medicine that “true disease declares itself”. Remember this and don’t talk yourself into a catastrophe every time you notice something slightly off with your body.
Please don’t crowdsource your symptoms on Facebook. You will hear terrible ideas from a lot of people who are high on confidence and low on knowledge. I have seen some frighteningly bad advice given in Facebook comments by people who are well-intentioned. And for some reason, everyone loves to share their horror stories here. Don’t do it. You will feel worse 100% of the time.
If you have any background in science and you’re curious, you might enjoy looking at scientific papers. This is for more of a deep dive on a topic than it is for practical advice. The best place to search the scientific literature for peer-reviewed papers is the PubMed database.
The peer-review process increases the credibility of the information by ensuring some degree of scientific merit. For the highest quality evidence, look for systematic reviews and meta-analyses, studies done with humans (not animals), look at the size and diversity of the samples. If you’re intellectually curious, scientifically educated, or interested in what might be coming down the pipeline, PubMed can be a great place to deepen your knowledge.
Alternative websites and blogs
Skepticism of the mainstream isn’t necessarily always a bad thing; sometimes the scientific establishment does miss the boat. How do you know if a non-mainstream source is legitimate or not? I suggest that you start with the idea of trusting science and also respecting its limitations.
When seeking out information and opinions that are not well established, consider the motivations and general philosophical orientation of the source. Some blogs that appear to provide alternative health information are vehicles for selling “alternative cures” that have no basis. Some are politically motivated disinformation. And some are really, truly reasonable sources of information about topics that don’t have a solid body of evidence behind them simply because they haven’t been sufficiently studied.
This category includes conditions that disproportionately impact women, poor people, and people of color, rare diseases, and conditions that are hard to diagnose with the methods currently in use. I suggest bringing an open mind and a critical eye to such sources.
If the source acknowledges and respects science and explains why its positions fall outside of the mainstream, it can be worth considering in the context of other available information. If it contains inflammatory political language, sells products, or is not clear about who its authors are, you should not consider it a credible source of health information.
Social media feeds
Consider the difference between active and passive information exposure. It’s good to seek information about a specific health issue or concern you might have, but it can be problematic to passively absorb what others are promoting, often with a vested interest. If your feed is full of health influencers, it can get really confusing really fast. It’s hard to tell who’s a true expert, who’s selling something, and who might be well-intentioned but not right for you. I suggest keeping this kind of content at arm’s length. Fill your social feed with pictures of cute dogs, and save the health stuff for times when you have specific needs. Then, you can seek out the right sources instead of whatever rose to the top of the algorithm that day.
I hope this helps you sort the good from the bad and the ugly, and remember you can always talk to a health professional who knows you if you have specific concerns. Keep learning!