Medical experts on TikTok are paying the price for stepping up against a 'ridiculous amount of myths' like taking Vitamin C for at-home abortions
TikTokprohibits misinformationthat "can cause harm to an individual's physical health."
- Medical experts in various fields told Insider that the company behind TikTok has insufficiently moderated misinformation.
- Misleading or false info on the app goes beyond
COVID-19and can spread to other facets of medical content, creators told Insider.
Savannah Sparks, a pharmacist and lactation consultant in Mississippi, joined TikTok last year. Since arriving on the app, she's spent much of her time on the app debunking false and dangerous content.
In a March video, Sparks, who has over 490,000 followers, responded to a TikTok user's video that claimed a supplement could treat ADHD. In a February TikTok, she debunked another user's video that claimed mixing over-the-counter painkillers created an opioid similar to Percocet.
Other videos involved Sparks' debunking of long-standing myths about COVID-19 such as the virus was no worse than the seasonal flu or that masks weren't effective in preventing its spread. Some of these videos even come from accounts of individuals themselves claiming to work in the healthcare industry, she said.
Sparks said videos she reported to TikTok were rarely taken down for misinformation, even when they appeared to violate TikTok policies about COVID-19. On the other hand, Sparks said she had videos of her responding to misleading or false information removed for harassment and bullying.
While she told Insider she'd drawn backlash for her earlier videos, Sparks said she faced a new wave of harassment on TikTok when she posted videos calling out people who made content promoting fake COVID-19 vaccination cards.
The FBI has warned that these fraudulent cards are illegal, though that hasn't stopped people from creating and selling these cards on sites like eBay.
Sparks said her followers in March started to tag her in videos of TikTokers who said they planned to forge COVID-19 vaccination cards.
"Forging medical documents is a felony," Sparks said. "I started responding."
Users created anonymous accounts on TikTok and Instagram to send her and her family these threats, she said. Other users openly passed around her home address in the comments on TikTok videos.
Some found her personal cell phone number and sent her threatening messages there.
Users on 4chan analyzed the backyard setting in one of her TikTok videos and compared it to satellite imagery from Google Maps to determine her location while she was visiting her mother in South Carolina.
"It got pretty aggressive, pretty fast," Sparks said.
Sparks shared screenshots of TikTok comments from users who shared her address and speculated about where she worked. She also shared direct messages from Instagram users who threatened to kill her and her young daughter because of her TikTok videos.
When she ignored the messages, Sparks said the trolls started targeting her friends, who requested that she delete many of her videos to avoid further harassment. And so she did.
The harassment led her to attempt to scrub all of her social media accounts from the internet entirely, including accounts she had built for her business. Three weeks later, she returned to social media, including TikTok, after people encouraged her to return and reminded her "activism doesn't come without a price," Sparks said.
Sparks said she felt comfortable re-joining social media after she filed a local police report, contacted the FBI, and got authorities in the military involved since her husband is active duty.
When she re-joined, the harassment continued, Sparks said. In May, she said someone mailed dozens of her neighbors a letter that called her "an awful troll" and a "self-righteous, vindictive b----." Sparks provided Insider a copy of the letter.
She said she doesn't know who sent it but reported it to the authorities.
"I'm not afraid," Sparks told Insider. She plans to print the letter on t-shirts and sell them to her followers to raise money for a pro-science organization, she added.
"I think that TikTok says that they value science and that they don't want medical misinformation to be spread on the app," Sparks said. "But what I've seen and what I know everybody else has seen is that is not the case and that it's all. It's all for show."
TikTok has publicly condemned misinformation, but COVID-19 is just one topic surrounded by misleading or false content
In 2020, TikTok took public action to limit the spread of misinformation - particularly claims related to COVID-19 and the 2020 election. The company said it removed more than 400,000 videos in the second half of last year alone.
TikTok also created a COVID-19 information center to provide users with up-to-date information and said it provided a link to the center on more than 3 million videos that mentioned the disease last year.
In February, the company implemented a new prompt to alert users if they were viewing or about to share a video that had contained facts that its moderators were unable to confirm. TikTok moderators are also able to escalate videos to its third-party fact-checking partners, including those from Science Feedback, PolitiFact, and Lead Stories if they're unable to verify or confirm the validity of claims in a video.
But medical misinformation on TikTok goes beyond COVID-19 and can spread to other facets of medical content on the app, creators told Insider. Dr. Inna Kanevsky, a Professor of Psychology at San Diego Mesa College, has courted more than 884,000 TikTok followers with her videos debunking creators' videos that misrepresent psychology.
Kanevsky said the type of inaccuracies she sees range from videos about serotonin in the brain originating in the gut to videos that misrepresent medical diagnoses and claim that depression is a result of a person's intelligence and that ADHD is a "superpower."
Months after joining TikTok, Kanevsky, who on her profile notes she's not a therapist but an academic, said she started seeing "blatant misinformation" relating to psychology toward the end of 2020. It was only after she started interacting with other creators who made psychology videos, that Kanevsky saw more of them on her For You Page (FYP).
The FYP is the primary way TikTok users are shown new videos. Every user's FYP is unique and is crafted by a TikTok algorithm that shows users content tailored to their interests. It's been credited with allowing communities to grow and flourish but has also been linked to fueling trails of harassment.
These creators, she said, often point to "studies" or "research" to back their claims all without providing sources to substantiate them. When she, or other experts, called this out, however, the creators often responded by blocking them.
Sometimes, she said, creators who spread misinformation will point to blogs or websites that aren't well-sourced as the basis for their content. Some of these creators are even verified by TikTok, she said, possibly creating the appearance that the information they spread is more reliable even if they don't have the background to make such claims.
Dr. Jennifer Lincoln, a Portland OB-GYN with 1.8 million TikTok followers, uses her account to spread information about reproductive health, but she's also used it to debunk "the ridiculous amount of myths" relating to her field that shows up on social media, including on TikTok.
"The ability to go viral so quickly on this platform is wonderful, but also can be really unfortunate and dangerous because misinformation can really go viral," Lincoln said.
Lincoln told Insider she's repeatedly debunked the myth that melatonin, often taken as a sleep aid, renders birth control less effective. In April, Lincoln debunked a false video from a creator who claimed that Plan B, a popular contraceptive, becomes less effective over time.
She's also debunked the viral claim that the COVID-19 vaccines make birth control less effective. And she's also had to set the record straight on false claims that birth control causes cancer, she said.
"It bothers me because you can say birth control causes cancer," Lincoln said. "And that can be true for one subset, but you're not getting the context. You're not getting references. You're not talking about the other cancers that it can prevent. You're not getting statistics to understand relative risk. I mean, that's hard to convey, especially when you have no credentials or training in doing that."
Like other creators who spoke with Insider, Lincoln said she'll often try to debunk a video by commenting on it in order to avoid amplifying harmful content further on her own page. But if a video is more popular, she'll make a video in response
Some creators have a direct line to TikTok to point out problems while others have to use the built-in tools
Creators who spread medical misinformation, Lincoln said, typically fall into two categories: either they themselves believe the misinformation, or they're using misinformation to sell a service, supplement, or other product.
Lincoln said she's witnessed videos that make false and outright dangerous claims about
She said she has regular contact with TikTok and can send them videos when she believes they are inappropriate for the platform or violate the company's rules. She said she believes that TikTok is trying its best to moderate and remove medical misinformation, but said the sheer amount of videos uploaded to the app presents challenges and can cause real harm.
But Lincoln called the company's in-app content reporting mechanism "terrible" and said the content she reported often wasn't removed the first time she submitted a report.
"I imagine they're trying to hit the sweet spot of freedom of speech versus taking down things that are really harmful," she said.
Social-media companies in general have said they work to balance the removal of content, like hate speech, while also preserving users' ability to have discussions on their platforms.
During a Congressional hearing in March, Facebook founder and CEO Mark Zuckerburg said his company tried to take a nuanced approach to moderation, using a balance of AI and human moderators.
"We believe in free expression," Twitter CEO and founder Jack Dorsey said also last month. "We believe in free debate and conversation to find the truth. At the same time we must balance that with our desire for our service not to be used to sow confusion, division, or destruction."
On TikTok, Kanevsky said she's tagged in dozens of videos every day from her followers who ask her to chime in on whether the information presented in a video is accurate.
"Obviously I can't address every psychology fact creator because a lot of them are just copying each other," she said.
Because TikTok prioritizes short, viral content, creators will often parrot other viral videos they've seen on the app in an attempt to garner TikTok fame, which could lead them to spread false or misleading information even if it's already been debunked or even deleted by the original creator, Kanevsky said.
Trolls often tell Kanevsky she should leave the platform if she doesn't like content made by other creators. But TikTok provides a "community" and a "richness of experience" that keep her on the platform despite its flaws, she said.
Sometimes, she tries to reach out to a creator directly allowing them to take down or correct misinformation they've shared before she makes a video to debunk it. Sometimes it works.
Kanevsky said she'd had success in talking to Max Klymenko, a TikTok creator with 2.2 million followers.
His recent videos include "actual sources" she said, a marked change from his past content, which included one viral video that told viewers cited "the latest science" in suggesting the color of one's clothing could affect their anxiety level and mood.
While TikTok has an in-app feature to report misinformation, Kanevsky said she'd mostly given up using it. She said had little success in having misleading videos removed by flagging them to the company, and said she's not even sure whether these videos actually violate TikTok's guidelines in the first place.
According to the company guidelines, TikTok specifically prohibits "medical misinformation that can cause harm to an individual's physical health."
"What this actually tells me is that this video basically telling people to diagnose themselves with personality disorders based on sleep habits is not really 'misleading information' because they cannot guarantee that that will cause harm to individuals," Kanevsky said.
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