Doing your own research
“I want to do some of my own research first.”
I’ve been hearing some variation of this comment more and more from my patients. Everyone seems to want to do a bit more of their own research before proceeding with medical testing and treatments.
I’ve had patients defer my recommendations regarding medications, diagnostic tests, and, especially, COVID vaccines until they are able to look into these suggestions on their own.
When patients come to me, I assume that they are interested in my opinions regarding their health. It’s very reasonable for a patient to expect that I know the data on the medical conditions I treat and that I tell them if a topic is outside the scope of my practice.
So when I offer recommendations to my patients, those recommendations are informed by my clinical training and appraisal of the medical literature, coupled with my understanding of biology and, in some instances, an educated extrapolation when a case falls into a data-free zone.
It’s an odd experience when my patients tell me that they want to do their own research before trusting my recommendations.
What does it mean to do your own research?
If you ask me whether I do research, the answer to that question is no.
Now, that doesn’t mean I’m not acquiring knowledge constantly. I read all the time to stay up to date with the medical literature for my day job (and also to write this newsletter!). But I’m not actually contributing new research that changes our understanding of the natural world or makes new discoveries.
And while I know that my definition of research is much different than my patients’ definition, I’ve been increasingly surprised to learn how different our means of information acquisition are.
If I’m looking to learn about a new topic, I try to go back to the primary sources of information. That usually means reading journal articles and commentary on the articles. Sometimes it means reading expert interviews or the work of journalists who are interviewing these experts. I try to seek out as much raw information so that I can synthesize it independently and inform my decisions.
When a patient tells me that they want to do their own research before making a medical decision, I’ve found that many of them approach information acquisition from the mindset of seeking trusted sources of information.
For my patients, their trusted sources of information aren’t primary source. They mean they want to review someone else’s analysis.
That’s a major difference - raw data versus a trusted source of information.
What do you consider a trusted source of information?
My patients more trusted sources of information don’t ever seem to be articles from the New England Journal of Medicine. Very rarely do they even mean reading a popular news article from someone else who has read the primary source literature themselves.
Deciding who is a trusted source of information and who needs more vetting is an incredibly important decision. In fact, if you’re planning to take medical advice, it may be the most important health decision that you can make.
Increasingly, my patients are getting their information from watching YouTube videos.
There’s so much health information on YouTube. And that creates a lot of opportunity to learn.
You can find everything from incredibly high level videos on EKG interpretation and cardiac pathophysiology to unhinged rants about the benefits of hydroxychloroquine in COVID or the reason that statins actually cause heart disease.
If you want accurate information, YouTube may not be your friend
Scholarly work looking at the medical information on YouTube shows an unacceptably high level of inaccuracy. This matches up with my anecdotal experience.
The ratio of wheat to chaff is a major problem here. So is the fact that it’s really hard to know which analysis is reliable and which isn’t if you haven’t read the primary source information or aren’t familiar with that kind of work.
The other problem is that social media is optimized to incite strong emotions, both good and bad. For health information, a dispassionate analysis of the data is going to be more useful than an emotional diatribe, but the latter is going to get more likes, shares, and algorithmic promotion.
YouTube’s algorithm optimizes for engagement, which has a lot of unintended consequences.
The world expert on this is probably Zeynep Tufekci, a sociologist who has written some of the seminal work on YouTube as an engine of radicalization. Tufekci’s work has been really ahead of the curve on this, just as she was ahead of the curve on wearing masks to fight the COVID pandemic.
I highly recommend seeking out some of Tufekci’s work if you want to learn more about this topic.
The bottom line: be careful when doing your own research
I don’t go through all of this to say that looking into things on your own is bad and your doctor is right.
Doctors are wrong all the time! I’m certainly wrong on things.
In the American healthcare system, you need to be your own advocate. If you aren’t looking out for yourself (and your family members), things will get missed and health outcomes will be suboptimal.
But you need to have a lot of caution about whose voice you trust.
YouTube may be great - there’s certainly some really wonderful, accurate, and useful content on there - but it can also send you down unproductive and incorrect medical rabbit holes.
Don’t forget that context is important and that what works for one patient may not work for another. Rarely is there a universal treatment that makes sense for everyone, even if the diagnosis is the same. Your doctor’s job is to contextualize information and personalize it for your own care.
You should feel comfortable asking questions to your doctor, even about things that you’ve seen on social media. But you should have a high bar to trust something that you find on YouTube, because it hasn’t been vetted by anyone even if it has 3 million views.
Our most valuable commodities are our time and attention. This goes doubly when it comes to our health. We should exercise care in how we allocate these limited resources.
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