Conceiving with TikTok

Fertility is in the zeitgeist, which means it's also on TikTok. Maven’s latest peer-reviewed research analyzes what’s trending.

TikTok is so addictive. 

Papers have been written to explain how it works: the dopamine it generates, the habit loops it creates, and the bite-sized temptations it produces. One of my friends describes her TikTok feed as a bag of potato chips (you keep thinking “just one more” and before you know it you’re handfuls deep). 

TikTok is also a primary source of health information for a lot of people, including most of Gen Z.

I still remember the quaint old days of the Internet. I recall, for example, when some of the doctors around me considered WebMD to be an affront. And also when, only a few years later, we collectively lamented “Dr. Google.”  That was ages ago. The information ecosystem for patients and doctors alike has only continued to get more complicated. 

For years now at Maven we’ve been tracing emerging health trends back to their online origins–from the rabbit hole of “Mucinex pregnancies” to the dubious condition of male “andropause.” I see this work as part of our duty to understand where our members are coming from–and to help them understand what is valid, what is false, what might be helpful, and what might even be dangerous.

But for me, social media in general and TikTok in particular can also be overwhelming. So I asked for help.

Dr. Natalie Henrich and Dr. Hannah Jahnke are researchers at Maven with backgrounds in anthropology, the study of what makes us human. A few months ago, I enlisted them to watch and analyze hundreds of TikTok videos that trended under the hashtag #TTC (“trying to conceive”). With scholarly rigor, they sorted the videos by content themes, identified the sources, and cross-referenced the messages with medical evidence. 

Yesterday, we published their observations in the open access journal of the American College of Obstetrics and Gynecology. Here’s what we found: 

• First, a lot of people are watching these videos. The median engagement for TTC videos was 14,000 likes, 237 comments, 1756 shares, and 588 saves (the most engagement was orders of magnitude higher). 

• Second, most of the videos (57%) contain misinformation. More on that in a moment. 

• Third, health professionals were much less likely to produce content than non-professionals, but health professionals were also less likely to promote misinformation. Notably, 72% of the videos with potential for direct profit featured misinformation.

Defining truth

As academic research papers go, this one is very simple–in fact I wasn’t even sure a medical journal would find it worthy of publication. There are no fancy statistical methods, just straightforward observations. But these observations didn’t come easy.

Natalie and Hannah came to me early in the project with a big challenge. What would be our definition of misinformation? Misinfo is harder to spot than you might think, and we had to make a call on where to draw the line.

“I was expecting to find some truly wacky videos. But what I found unsettling was that for the majority, I couldn’t immediately tell what was accurate or not,” Natalie told me. One of the zanier videos, for example, suggested drinking a jar of water left outside during a full moon—AKA “moon water.” But far more common were the many videos that dwelled in the ambiguous sinkholes of mistruth. 

Natalie pointed me to videos urging viewers to completely cut out caffeine in order to conceive. In reality, clinical guidance only cautions people to moderate their intake. And while going cold turkey isn’t harmful, it seems unnecessarily punitive to deny people their morning coffee. Yet for the desperate and despairing, eschewing coffee or even taking much more elaborate measures to get pregnant, may seem worthwhile.

Natalie and Hannah sorted the content according to whether or not they could find any support among the 37 million citations and abstracts contained on PubMed, a database maintained by the National Institutes of Health. Then they further validated their classification of misinformation with our fertility medical director, Dr. Wael Salem. But, as it turns out, the medical establishment didn’t always have clarity either. 

Hannah noted, “Even after we read the peer-reviewed articles, I was often still confused—and we are professionals trained in how to read scientific literature.” The use of Mucinex to get pregnant is the perfect example. There isn’t great evidence that it works–but there isn’t great evidence that it doesn’t work either.

At the same time, regardless of what the medical literature said, the content was almost always true from the perspective of the person who made it. One person got pregnant after getting a fertility massage and has a platform that reaches tens of thousands of eyes. From her perspective, promoting massages is a common sense public service.

Information distortion

In July I was hiking in the Columbia River Gorge with my friend David Scales. David is an overachieving internal medicine doctor with a smorgasbord of additional bona fides, including a PhD in sociology. He is also Chief Medical Officer of Critica, an NGO that studies the best ways to combat medical misinformation online. He’s one of those people who genuinely seems to know everything. 

Amid the trees, far away from the information superhighway, I was describing our challenge in classifying misinformation. I was also increasingly aware that the pull towards TikTok rumor mills could be due, in part, to an abdication of responsibility from the medical establishment. Some people get pregnant easily, and others are ready to commit themselves to IVF. But the vast majority of people fall somewhere in between, and for them, the medical system doesn’t offer much guidance or support.

He agreed–and then he surprised me, particularly given his position, by telling me that I may be misguided in labeling the content as “misinformation.” In his gently erudite way, he explained, “The problem is that some definitions of misinformation include ‘misleading,’ but who decides what is misleading? Being misled is also an outcome, making it difficult to say something is indeed misinformation without empirical evidence it has misled folks.”

He prefers “information distortion,” of which misinformation is one manifestation. “Other manifestations include things like overemphasis of side effects, over or under confidence amidst significant un/certainty, true information taken out of context, conspiracy theories, etc.” 

In short—exactly the phenomenon my team saw on TikTok. 

David later introduced me to Jennifer John, his bright young research assistant who is in the middle of applying to medical school–and already one of the nation’s leading experts in how information distortion impacts women’s health.

She pointed out a potential “audience mismatch” on TikTok: “There's the question of, what's the intention behind consuming this content? Is it to acquire information about health, or is it for entertainment and relatability? And if it's consumed for those purposes, does it also have an impact on someone's health beliefs? We don’t know.” 

She also described why women’s health is particularly rife with these mismatches. A toxic combination of information vacuums and stark politicization can imbue falsehoods about women’s bodies with enormous staying power—take for example the idea that terminating a pregnancy inherently results in clinical depression and anxiety. Though no scientific literature supports this, it’s often considered a given. “There’s a sociocultural component that's very sticky,” Jennifer told me.

Social media content moderation also lags in women’s health compared to other fields. “The harms are maybe not as easily quantified or objectified in reproductive health, where the outcome might be pregnancy or not, compared to something like drinking bleach, which might be seen as a real immediate threat,” she added.

To be misinformed is to be human

From Jennifer’s perspective, it’s easy to imagine a world in which we’re all vulnerable in some way to misinformation. Few people understand this better than Dr. Dannagal Young, a political scientist and professor of communications at the University of Delaware, who once was a self-admitted conspiracy theorist herself. 

For decades, Danna deployed social science surveys to try to understand how strategies like political humor help shape people’s attitudes, beliefs, and behaviors. But five years into grad school, and just months after she gave birth, her husband was diagnosed with a rapidly expanding brain tumor. After upending her life to serve as his primary caregiver, in her grief, Danna did what many do: she frantically searched for a culprit. Suddenly the healthcare workers in charge of her husband’s care seemed like foes, not allies. Suddenly internet message boards seemed to contain the only explanations she wanted to hear for why the person she loved most was dying.

In the process, Danna learned firsthand how reasonable people can be made unreasonable. So much so that during the Covid-19 pandemic, she penned a rousing essay about the anti-vaccine movement—which catapulted her to virality, and ended up refocusing her research on how public opinion is shaped. 

Today her scholarship is essential reading for institutions and individuals alike who want to have agency over the modern information algorithms. Yet even with decades of research and data at her disposal, Danna thinks the human impulse to grab at misinformation is very basic. 

“Life is actually very hard. True life has a whole lot of pain,” she told me bluntly, and only with a little laughter, when we spoke this week. “Misinformation doesn't take off when it makes people feel like everything is terrible and they're going to die. Misinformation takes off when it offers hope and makes you feel like your team's going to win.”

“We hate feeling like we have no agency. And I do think that a lot of times in our interactions with the medical community, we feel like we have no agency,” she added. “As scientists, we never remove ourselves from doubt and we have all these caveats. But what people actually want is clarity and certainty.” 

The informer’s toolbox

Danna’s perspective begs the question of what doctors and healthcare solutions like Maven Clinic can do to communicate better—particularly in areas like reproduction when certainty just isn’t always possible. 

Dr. Sanaz Ghazal is a reproductive endocrinologist based in Newport, California, and my former senior during residency–which means in my eyes, she will always be the coolest. As it turns out, 50,000 other people who follow her on TikTok think so too. 

She posts vibrant, funny, and perfectly timed content that notches millions of views. In one, Dr. Ghazal stands in faux-shock with a patient and the caption “POV: he apologizes but I already froze my eggs.” In another, Dr. Ghazal strolls through Target, sharing her top four evidence-supported supplements. In many, she myth busts, and in some, she becomes that of-the-moment symbol: a dancing doctor. 

All of this, she tells me, is in service of three interconnected but distinct goals: to educate patients on the basics of reproduction, to dispel the common myths she encounters both online and in her office, and to normalize conversations around infertility and pregnancy loss. In doing each, Dr. Ghazal lays the virtual groundwork she needs to get to the meat of her in-person appointments more efficiently—a pain point for many clinics. In other words: she’s earning the trust of the people she serves.

“If I have a patient who sees my content about fertile windows, and they try my techniques at home for six months on their own, even if they’re not successful they might feel a sense of trust. They might say, maybe I should go to her office and see if she can help me with the next step,” Dr. Ghazal told me. “I don't have to work as hard to build that trust, because there's already some goodwill built up through social media.” 

Others in the fertility industry see the same opportunity. Michelle Spatafore, Chief Marketing Officer of Pinnacle Fertility, not only believes that TikTok can be a force for good, she thinks it may be an essential tool. She tells me,  “On TikTok we can do a lot in a small soundbite.” Already, they’ve seen great success in turning their trusted clinicians into fertility influencers: Aidan the embryologist; Dr. G or Dr. T the REIs.  

As Pinnacle scales, Spatafore wants clinicians to serve not as standalone personalities, but as one unified portrait of Pinnacle’s excellence in providing trustworthy care. In the process, she also appears to be building infrastructure that could democratize fertility education.

Spatafore and Dr. Ghazal have succeeded in using TikTok to empower by locking onto a simple truth that influencers have long known but doctors are only coming around to: facts may be necessary to convey knowledge but they’re no longer sufficient…and perhaps they never were. 

Dannagal Young, again, put it best. “You must communicate based on experience, which means you as the practitioner and scientist must put yourself back in the story,” she tells me. That’s not to the exclusion of expertise–it’s just that our expertise needs to be reconnected to our very human, universal attraction to our fellow person’s common sense. 

To the doctors and scientists out there she suggests, “You can say, I’ve studied this for 20 years and barring some extraordinary statistical anomaly, this is what I know.” 

What my team is reading, considering, and building against: 

• All of Dr. Dannagal Young’s work is well-worth a perusal—and if you don’t believe me, perhaps I can further entice you by saying she comes from an improv comedy background, with a rapid wit that is as pronounced as her scholarly insights. Her TED Talk on the psychology of political beliefs is a great starting point. From there, I’d highly recommend her essay on how scientists can be better public communicators.

• Among her many early career research feats, Jennifer John has been correcting widespread misunderstandings of PCOS. In one study, she found that 45% of TikToks and 89% of Instagram posts about the topic displayed a financial conflict of interest—further proof that we need more objective voices on these platforms. As Jennifer prepares for her career in medicine, I’m comforted to know that experts in misinformation are also on their way to becoming clinicians! 

• So far, Pinnacle Fertility’s most viral TikTok shows Dr. Ilan Tur-Kaspa performing a successful embryo transfer, and then, at the end, printing a photograph of what will hopefully become the family’s baby. “Don’t sell it on eBay,” he jokes before handing the picture over. As Michelle Spatafore tells me, this is Pinnacle’s recipe in a bottle: in just a few seconds the video has walked users through a complex medical procedure, offered them hope, and made them laugh.

• Lastly, some more exciting news from Maven: last week we announced our $125 million Series F fundraise, cementing our role as the largest—and now most valued—virtual clinic in women’s and family health.
  
  We plan to use these funds to make health care delivery more sensible and crescendo a message we trumpet often at the Preprint: with the right tools and technology, fertility care can be accessible and affordable to all. If you’re reading this, thank you for joining us on that mission!
  
  If you’ll be at ASRM in Denver next week, please say hello. I’ll be the one in the bow tie :)