You're listening to Shortwave from NPR.
Hey, short ravers.
Emily Kwong here with Science Desk correspondent Katie Riddle.
Hi.
Hey, Emily.
So I want to talk about a force that's having a pervasive effect on healthcare right now.
Oh, okay.
I bet you're going to talk about funding cuts.
Nope.
It is not funding cuts.
Also not insurance.
Oh, that was my next guest.
Well, those things are important too.
But today I want to talk about influencers.
So Emily, these health influencers have especially captured the attention of adults under 35.
According to a global survey from the communications firm Edelman, 38 of these respondents say they trust social media over a real physician.
That's a very high percentage.
So you're saying over a third of Gen Z is getting their medical advice from sources like Instagram or TikTok.
Yes.
And the problem with this is a lot of these health influencers are peddling misinformation.
Most of them don't have medical degrees or training and are offering a lot of unproven wellness strategies and unproven medical treatments.
What's an example of that?
So one of the pockets of the health influencer space that is especially concerning to me is birth control, specifically the hormonal kind.
And while hormonal birth control can have side effects, we have a significant body of research that shows it is safe for most people and it's also extremely effective at preventing pregnancy.
But many health influencers are fixated on what they perceive as dangerous or extreme side effects.
Okay, so when you've watched these videos, what kinds of side effects are people talking about and what kinds of claims are they making?
All kinds of things.
There are claims that it can, for example, destroy your gut biome, damage your skin, make you depressed, make you gain weight, make you lose your sex drive, even change your personality.
Some of those are totally manufactured.
Hormonal birth control does not change your personality.
Some of these claims could have truth to them, but they're really just not being accurately represented.
Hmm.
How prevalent is hormonal birth control misinformation on, like, TikTok?
So one study analyzing 100 TikTok videos about contraception showed that over half of the creators explicitly rejected hormonal birth control and more than one in three expressed a distrust of healthcare professionals.
Some of the videos I watched were making claims backed by no scientific evidence at all.
Well, in that case, let's look at what scientific evidence does support.
Today on the show, what's healthy and what's hype when it comes to hormonal birth control?
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Okay, Katie, let's talk about health influencer videos.
I have definitely seen them, especially since the pandemic.
You specifically looked at ones having to do with contraception, hormonal birth control.
What is the scope of the problem here.
Okay.
To be clear, not all TikTok videos about contraception are inaccurate, but a study from La Trobe University in Australia that same study I mentioned earlier that analyzed 100 of the most popular videos on birth control, it found that only 10 were created by actual medical professionals.
And there was a quote, prominent prevalence of misinformation is how they phrased it.
All of this is having an impact at the doctor's office.
A lot of people in our communities are starting to, I would say, go down a bit of a rabbit hole, perhaps sort of conspiracy-minded approaches to thinking about contraception.
Shereen Ghorbani is the president and CEO of Planned Parenthood in Utah.
She says that in part of that state, it's difficult to get reproductive care and information.
Other parts of the country are experiencing this too.
Like many states, they have restrictive laws around abortion since the federal right to that procedure was overturned.
And access to health care of all kinds can be especially hard to find in rural places.
She fears her patients who are looking for information are getting taken advantage of.
They are being influenced by social media influencers, who are personally benefiting off of trafficking in incomplete and misleading information.
Is this just a rural issue?
Where this problem exists?
No, it's equal opportunity.
Jennifer Conte, an obstetrician gynecologist at Stanford University, says that every day she has to disabuse people of things that they've heard on social media.
When she's having these conversations, she's really careful not to lead with accusations.
Whether it's their own experience or what they saw online, like, yes, absolutely, I understand that.
That sounds hard.
Here's why that's sort of... overblown or not completely accurate.
Like that's only a part of the picture.
And when patients bring up their concerns, are they mostly talking about the side effects?
Yes.
Horror stories about incredibly rare side effects come up a lot.
Contraception.
Like many other medications, can have side effects, even serious or life-threatening ones.
It's just kind of an exercise with each person trying to, you know, parcel out with them.
Okay.
So this was only an N of one, meaning only one person had this experience.
Oh, so she's helping patients make sense of their risk in light of the fact that, like one individual had this complication type of stuff.
Exactly.
She said she's had to really learn how to talk to her patients about these individual testimonies that they heard about birth control going wrong.
To put them in perspective
Yeah.
Here's an influencer.
She goes by the Lizzie Morris.
She talks about her decision to get an IUD in a post on TikTok.
I do not know the risks or anything of having this IUD.
So in the video she's pointing to a picture of an X-ray and she says that's where her IUD got embedded in her uterus.
Right there.
That is the wall of my uterus.
Had to get it surgically removed via hysteroscopy.
Oh, so this patient clearly had a bad experience with their IUD.
What happened?
So this complication is called uterine perforation, which is a real thing.
But it's very rare with IUDs, about one in a thousand, according to one study.
It's also highly treatable and can often be addressed with a relatively brief medical procedure.
But people posting about these things on social media of course don't have an obligation to explain these statistics.
And they aren't necessarily motivated to represent the chances of them happening or not happening.
Yeah.
The problem though is, without that context and knowing the probable risks, people don't really know how to think about birth control.
Exactly.
OBGYN.
Jennifer Conte says one problem with highlighting these stories is that they often lead with fear.
Lizzie's experience, for example.
It does sound horrible, but I really cannot overstate how rare it is.
Much more common, says Conti, is an unplanned pregnancy without the use of contraception.
Okay, so Katia, what should people do if they're worried about hormonal birth control?
Above all, what I heard from doctors is you need to have a conversation with them or another trained medical professional, not an influencer, not chat GPT.
I talked to several doctors for this story who emphasized that you know you can have all the information in the world, but at this point we just don't have robots that can give you the kind of personalized examination that a human can.
Again, here's OBGYN Jennifer Conte.
There's no way that Google or AI is going to have your exact answer to your exact question for your exact body, because we all have different bodies.
And so you can go down a Google or a Reddit rabbit hole and try to find exactly what's going on with you, but it doesn't have the answer.
She says that there needs to be an exchange of information in these conversations.
Yeah, like a true back and forth between you and a medical doctor to figure out what's best for you as an individual.
Exactly.
And just one example.
There are a number of health conditions that could change the odds of someone having blood clots.
That's a known potential complication for birth control pills.
That is for most people very, very rare.
But these are the kinds of things human doctors can take into account.
You are your own unique being.
And you know, even AI that's pooling tons and tons of different people's experiences, not your own.
Gotcha.
So when you're deciding your birth control, find a human professional to help.
That's that's pretty clear.
But I got to ask, like, what if you're worried that you can't find someone who will really listen?
You know, totally.
This is a real issue.
Many women do consistently feel like health professionals dismiss their concerns.
And there are also very real constraints on providers time.
So you may have to advocate for yourself in order to have thorough conversations or even try different providers.
Yeah.
And that's all assuming you have access to health care.
At all, right?
Which not everyone does.
Yes, exactly.
Yeah.
I want to dwell on the side effects just a bit more, because it does seem to be the primary concern that people have.
And that's why they're going to TikTok and finding these outlier stories online.
Make their decisions with.
What should people do when it comes to side effects?
You can't know with almost any medication for sure what the side effects are going to be, and that can be really scary.
However, one thing doctors can generally tell you is how likely the side effects are.
Common, uncommon, extremely rare.
It's important to weigh these odds alongside the odds of getting pregnant.
Like a major side effect of not taking birth control is pregnancy.
I talked about this with a gynecologist from Oregon Health and Science University.
His name is Jeffrey Jensen.
One of the things that always surprises me is that we're in this generation of social media.
There has been no context to what the exposure to pregnancy means to women.
And the ability to avoid it means their ability to be equal players in all aspects of modern life.
I hadn't really thought about pregnancy in this way as like a medical event, you know, but it is.
It is.
And when he says equal players in all aspects of modern life, what does he mean by that?
Well, pregnancy itself is a risk.
It can be physically dangerous.
But more than that, parenthood comes with a real societal tax.
Before birth control was widely available.
Having children significantly prevented women from being independent.
It's still the case that women who have children earn less money, engage in more unpaid labor and report that having children affords them fewer career opportunities.
And the trouble with these health influencer videos is that their critique of birth control is just really not taking into account the full picture.
They're not talking about the risks involved in having an unplanned or unwanted pregnancy.
Yeah.
What I'm hearing you say basically is that hormonal birth control needs to be talked about in a far more comprehensive, nuanced way.
That's really important.
And Being comprehensive and nuanced is not the strength of social media.
Yeah.
To be clear, we're not weighing in on having a kid or not.
Obviously, there are lots of reasons to have children.
But it is important to consider your own risk, tolerance for pregnancy and access to reproductive freedoms when thinking about the role of birth control.
Katie Riddell, science correspondent.
Thank you for bringing this to Shortwave.
Thanks for having me, Emily.
Shortwavers.
If you have a health versus hype question, something you've been seeing on social media that you're not sure about, please email it to us.
We're at shortwave at npr.org.
This episode was produced by Hannah Chin.
It was edited by Rebecca Ramirez.
Tyler Jones checked the facts.
Kweisi Lee was the audio engineer.
Beth Donovan is our vice president of podcasting.
I'm Emily Kwong, and you're listening to Shortwave, the science podcast from NPR.
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