Dr. Jenny Wu first got on TikTok during the pandemic, where she happened upon videos of women sharing their experiences of having intrauterine devices, or IUDs, inserted to prevent pregnancy.
“I remember watching a video of a young woman recording herself while she got an IUD placed, and her screaming in pain and looking very uncomfortable, and you can hear the provider in the background going like, ‘It’s just a pinch,'” Wu said.
As an OBGYN intern and now resident at Duke University Medical Center, these videos piqued Wu’s interest, and she remembered them when younger patients were hesitant about getting IUDs.
“And I would always ask them, ‘Is it because you saw something in TikTok?’ And they would say, ‘Yeah, I did,'” Wu said.
One day at work, Wu mentioned her observation to her research mentor Dr. Jonas Swartz, who encouraged her to pursue it as an area of research.
“We really approached this as a systematic review. So we looked at the top 100 most liked videos on TikTok,” Wu said. “We used a web scraper that was able to compile a lot of that data for us. And so it’s really a snapshot in time.”
Ken Huth
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Duke University
TikTok has a reputation for spreading misinformation, and that’s especially true for medical topics. The study turned up some videos with inaccurate information. But the biggest takeaway was about pain. Almost all (96.8%) of the videos mentioned either pain or negative side effects that come with an IUD. While the IUD is considered one of the most effective forms of birth control, the study made it clear that some patients experience a distressing amount of pain with the procedure, and want it to be taken seriously.
Wu said she and others at Duke now offer pain management options to patients getting IUDs. But seeing the influence of TikTok on her patients still concerns her.
“The reason why it is so relevant in a state like North Carolina is our abortion laws have changed,” she said. “How do you want to prevent pregnancy in a state in which our access and our ability to provide an abortion is so much more limited?”
In July of 2023, a law was passed in North Carolina reduced the number of weeks allowed for an abortion from 20 weeks to 12 weeks.
Helpful but incomplete
Wu, Swartz and collaborators have since carried out similar studies looking at the top 100 videos covering topics including vasectomies, medication abortion, oxytocin, in vitro fertilization, and endometriosis. A theme that emerged was that many popular videos with these hashtags depicted distinctly personal experiences that weren’t necessarily representative of everyone.
But these “personal experience” videos can help others find answers when their healthcare providers are not initially helpful.
Angel Moltisanti, a 25-year-old resident of southeastern North Carolina, was also on TikTok during the pandemic when she came across a TikTok video about endometriosis. It explained symptoms that had troubled her for many years, like painful, irregular periods, and a feeling of having thorns in her uterus.
“It opened up a world to me where I was able to go and talk to my doctor and say, ‘Hey, I think that this is something worth looking at,'” Moltisanti said. “I’m still getting brushed off, unfortunately, it’s still not something that doctors take seriously.”
Women with endometriosis wait an average of about seven years to be diagnosed. Experiences like these can push people to social media for support and answers. Moltisanti said finding these videos not only provided her with actionable information, but also made her feel less alone.
But users of these platforms still need strong media literacy skills to identify biased and incomplete information.
Small solutions to a complex problem
Claudia Trevor-Wright is a sexual and reproductive health consultant for the American College Health Association, or ACHA, a volunteer organization working to advance the health and well-being of college students. She said teaching people to recognize inaccurate and misleading reproductive health information is an issue that predates TikTok.
“It’s really about teaching students how to be good consumers of health content, no matter where that content comes from,” she said.
Trevor-Wright said health information does not necessarily have to be false to be biased, and can come from friends and family as well as social media. She said a major challenge for those working in college health is making sure students can contextualize anecdotal information.
“And understand how those differ from years of clinical data and research, even if they are absolutely true for the person who is sharing it,” said Trevor-Wright.
While not everyone goes to college, these students usually belong to age groups that use TikTok the most, with 64% of 13-17 year-olds and 62% of 18-29 year-olds reporting using the platform.
There probably won’t be a silver bullet solution to sending young adults into the world, impervious to misleading health information. But ACHA’s volunteers can work to meet the unique needs of their campuses to fill in the gaps in students’ knowledge.
Robbie Stines is another member of ACHA and a college health center nurse practitioner. He said teaching health media literacy skills to students often requires meeting them where they are, and building trust from there.
“I always tell people, you have to, you have to vibe with your healthcare provider, you know. And I think past experiences have definitely left some mistrust, and that’s understandable,” said Stines.
Stines says college health centers can help with both mistrust as well as a lack of information because providers there can often see patients at low cost and on short notice – and can help students demystify intimidating health topics without having to rely on social media alone.
