Can TikTok really be a reliable source for health information?
24th November 2021
Social media app TikTok has become a unique story-telling platform where users come from all areas of life. Many use the app to share facts and information regarding health. Chantal Weller investigates whether people should be turning to TikTok to get health advice.
What started as an app used for sharing quirky dance routines and amusing sketches to iconic sounds is now an emerging learning platform.
The hashtag #LearnOnTikTok currently has over 201 billion views, showing that TikTok has become a prominent platform to learn new things. With this, the app has proved a useful way to deliver health information.
Most TikTok users are from the younger generation; in the United States as of September 2021, 60% of TikTok users were between the ages of 16 to 24. Subsequently, the platform has been a go to for adverts targeting this age group.
For example, amid the Coronavirus pandemic, adverts encouraging users to uphold guidelines flooded the app. Equally, as the vaccine became available for younger people, the NHS has been using the app to show adverts encouraging them to get their jabs.
Source: @nhsuk on TikTok
Getting involved in TikTok is easy – practically anyone can make a video, celebrating the latest trends, documenting their lives, or sharing useful information. It is this that is the apps unique selling point.
TikTok works in an effective way that upholds the user’s attention, so they will often find themselves mindlessly on the app for hours.
#ItStartsOnTikTok Advert from official TikTok UK YouTube channel:Source: TikTok UK on YouTube
TikTok currently appeals to a young healthy demographic so there is a risk it will increase the worried well consultations.- Allan Fox, GP from Kent
We are seeing a rise in reliable sources using social media platforms to share health information. But TikTok is one of the most popular due to its simplicity and popularity.
Yami International is one of the many medical professionals who uses TikTok to share her expertise.
Yami is a midwife with a master’s degree in gynaecology and obstetrics. She works in birth rooms and the gynaecology and obstetrics emergency unit in France.
Yami expressed the value of health professionals sharing their expertise, especially on popular social media platforms. “I think in our world where the internet and social media have a huge part in our lives, having doctors and health professionals sharing their knowledge and experience on social media and TikTok is a blessing,” she said.
One TikTok of hers has received over 40 thousand views. It is titled: “True or fake news: But what are they doing to this woman?”
In the TikTok video, Yami duets someone else’s TikTok to explain what is going on.
The original TikTok shows a woman reacting to a pregnant lady having an ECV done. This is a medical procedure to turn the baby around to avoid complications when it comes to birth. But, the original TikTok does not explain this, it just shows the user's reaction to this procedure being done and saying, “I can’t imagine the pain.”
After seeing this TikTok for the first time, Yami couldn’t understand the desire to create a fear of pregnancy. She encourages viewers of this video to talk to their gynaecologist about any worries they have, and she asks creators of TikTok’s like this to stop spreading fear.
“This is just intolerable because we have reached a point where some women are scared to be treated by a gynaecologist, by a midwife, and are scared to go to the hospital!
“Girls send me all the videos you don't understand, send me all your questions, so we can clarify everything!” She said.
Here is Yami’s TikTok, and her full translation of it:
Source: @yamiinternational on TikTok
The video you have just seen is a video of a procedure we do in obstetrics when a woman has a breech baby, it is called an ECV. When a baby does not have his head down and he is in breech or in a transverse position in her womb, around 34 or 35 weeks of amenorrhea, we propose to the woman if she wants a vaginal birth (but not a vaginal birth with a breech baby), we propose to turn the baby around so her baby can have a head down position. There are a lot of women who are afraid to give birth to a breech baby, because there is a misconception spread widely that says it is impossible to give birth to a breech baby, but in reality it is totally possible and there won't necessarily be more issues than for those who give birth to a baby who has a head down position. So for this woman in the video, we had proposed her an external cephalic version, or ECV and the obstetrician in the video is doing this procedure to turn her baby around. Even if it looks impressive, the woman is not suffering to death, like the first women you saw in the video says! Why? Because we always give medication to women when we do this, and we always say to women that if they experience any discomfort, not pain, just discomfort, they should tell us, and if they want us to stop, we will stop right away! We always ask people's consent when we do anything to them! So stop traumatising women with videos you don't even understand and can't even explain! This is just intolerable because we have reached a point where some women are scared to be treated by a gynaecologist, by a midwife, and are scared to go to the hospital! This phenomenon of scaring women brings more pathologies and more harm to their health! So stop spreading fear! Girls send me all the videos you don't understand, send me all your questions, so we can clarify everything!- Yami International
Sharing “medical” advice if you are not a professional is dangerous and sometimes that leads to severe pathology and even death! I see the result of it almost every week at the hospital!- Yami International
Yami also said that some of her patients have anxiously sought help from her after seeing something misleading or worrying on TikTok. “I often get calls from my patients, sometimes in tears, because they think they have a serious disease because they've read a comment on social media or watched a video on TikTok made by someone who hasn't even studied medicine, who explained that their symptoms (that are most of the time benign) can lead to death or serious diseases," she said.
“Some women, because they have a large following or because they have given birth several times, think they have the right to give medical advice to women.
“Giving birth even 15 times doesn't make anyone an obstetrician or a midwife. Giving birth doesn’t give you the expertise to handle and stop a post-partum haemorrhage. Giving birth doesn't give you the knowledge on how to treat Gestational Diabetes or obstetric cholestasis, but yet some women think they have the right to give medical advice.
“They have to understand by doing so they are more likely to put people in danger rather than doing them any good.
“Sharing “medical” advice if you are not a professional is dangerous and sometimes that leads to severe pathology and even death! I see the result of it almost every week at the hospital,” she said.
The midwife (sage-femme) has seen some upsetting situations which were caused by wrong information being shared online. “Some women on TikTok, who have an audience mostly composed of pregnant women, say dangerous things such as “it is normal if you don't feel your baby moving for several hours”. Which is completely false! Not feeling your baby moving even after stimulating her/he is an indication to go straight to the obstetrical emergency department! Unfortunately, some women listen to their “advice" and don't come to the emergency department until the next day to find her baby dead in her womb. I've already had to face this situation with one of my patients.
“This is how dangerous misinformation can be! Even if we always tell our patients to call us to ask their questions, some of them still prefer to listen to famous influencers on TikTok rather than their doctors or health professionals,” she added.
Unfortunately, Yami is far too familiar with the results of misinformation being shared on social media. For example, she once had a patient who asked for an appointment to remove her Nexplanon because she was convinced that it was giving her back pain. Yami concluded that this is complete nonsense, but this patient had seen several girls of her age on TikTok affirming that she thought this was true.
“The problem is that she didn't seek medical help for her back pain which just got worse and worse over time because she was convinced that she only had to wait for her appointment with me so her Nexplanon would be removed, and her back pain as well. This is a typical form of delay in receiving healthcare because of self-diagnosis based on misinformation seen and spread on TikTok,” she said.
Trends on TikTok don’t just include dances, but also health related trends. Yami described one DIY health related trend: “Recently there was a trend on TikTok, the “DIY IUD removal” trend; young women were playing at removing their IUD by themselves. This is extremely dangerous and can lead to cervical injuries, haemorrhage and severe infections.”
Source: @mikkiegallagher on TikTok
Yami described some misinformation being shared on TikTok as myths that are designed to scare women and limit them in their sexuality. These gynaecology myths include "the myth of the loose vagina" or "winter vagina."
“There is a lot of fear in women when it comes to gynaecology, pregnancy and giving birth, due to fake information we see on TikTok or the internet. It has come to a point where some patients are even scared to go to the emergencies because they are scared of gynaecologists or midwives because they have heard stories on TikTok that are terrifying.
“From time to time I take care of patients that are in life-threatening situations who tell me afterwards that they didn’t come earlier because they were scared due to all the things they saw on TikTok or social media,” she added
But talking about these examples of misinformation being shared on TikTok reminded Yami of one of her patients whose life was threatened after being scared by information she saw on social media. This patient was heavily bleeding for two days straight, and she had to be taken into emergency theatre. “Her blood level was so low she also needed a blood transfusion. If she had come earlier things would have been totally different and her life wouldn't have been threatened,” Yami said.
Yami concluded that there are issues in reliability on TikTok as users end up putting their trust into an underqualified person who is giving health information.
What was once an app used primarily for sharing fun videos, has also become a safe space for people to share their thoughts and feelings as well as how a physical or mental illness they have affects their everyday lives.
Rosie Daniels is an influencer who has 3.3 million followers on her joint TikTok account with her boyfriend Harry. The couple produce funny content about being in a relationship.
Source: @itsrosieandharry on TikTok
But Rosie also uses the app to share how her life is affected by her psoriasis, and her content portrays that she wants people to feel positive about their psoriasis.
Source: @itsrosieandharry on TikTok
She tells the story of how her psoriasis developed to the point it is at today by captioning images of the affected areas on her body in a short TikTok video: “A year ago my psoriasis started out with tiny little red patches and now it’s spread covering almost 60% of my body.
“When it first started on my torso, I had no idea it would get to the way it looks today.”
Source: @itsrosieandharry on TikTok
In another TikTok she shows her boyfriend drawing flowers around her patches of psoriasis on her leg. She captions the TikTok saying: “My boyfriend always calls my psoriasis patches my flower petals. So, when I’m sad he turns them into pretty flowers for me to make me feel pretty! It always makes me smile so much, I’m so lucky to have him.”
Source: @itsrosieandharry on TikTok
On the 29th of October Rosie did a social media post dedicated to World Psoriasis Day and explained that she wants to continue to show her followers how important it is to be real.
“I know I use my platform regularly to show you guys how important it is to be real, not perfect but today is a special day in my heart. I’ve spent so many days crying over my skin and right now it’s the worst it’s ever been but I’m here to take you all on my journey through the highs and the lows.
“The most important thing I can do is to show you all how normal it is to be different and how special this makes you no matter how you look. Learning to love yourself is a difficult process but I’m here with you guys the whole way,” she writes.
Rosie is an example of someone who uses TikTok to share details of her own health to help others. She’s aiming to put a positive spin on a chronic skin condition which can create huge struggles to sufferers’ everyday life and self-esteem.
But the depth of TikTok doesn’t stop there. Some people use the app to learn more about mental health and healing methods, as well as to seek support by hearing other people’s stories.
Source: @mamapvibes on TikTok
Amelia Wrighton is the Chief Executive of Suicide&Co, a charity that helps people who’ve lost others through suicide. She believes that TikTok is a positive space for people to share their own experiences. But she said users should not use this as their only source when seeking health information.
“People are using social media as a space to learn about mental health and offer support through resonating with other people’s stories. People take a lot of benefit from hearing other people’s stories and taking advice from professionals who use social media,” Amelia said.
Amelia outlined the importance of users stumbling across useful information that pops up on their TikTok feed. “We’ve understood that people take benefit from that because they get to take in that information without having to look for it.
“For example, videos on methods of dealing with grief and reminders for women to check their breasts, are hugely beneficial for people to stumble across because they can intake the information and learn something in their everyday lives. For me, that’s the real benefit.
“Being able to do bitesize pieces of information is a good thing if that’s what people are looking for,” she said.
However, Amelia described some videos to be “clickbaity” because they force viewers to feel shocked. After watching the TikTok below, Amelia was left with the opinion that both creators were saying to react in a certain way. She added that she would personally do some online research to go alongside the TikTok if she felt concerned after watching, and then she would react.
Source: @thesavvykay on TikTok
But Amelia could see the flip side and appreciated that content creators on TikTok could help each other by sharing their stories. “But, if people are comparing situations and helping each other by doing so, then they are success stories,” she said.
“When it comes to actual health, I feel like it should live off of social media. If you’re trying to understand a symptom it should live somewhere else.
“It should live somewhere like a NHS app that feels more legitimised,” she said.
The 29-year-old expressed that she’s grown-up seeing videos on YouTube or Facebook for years such as ‘drink this amount of water a day’ and ‘this will make your hair look good.’ She said: “We’ve all been brought up on fake information for ages.
“If you have a symptom that you want to self-diagnose or that you want to understand then that’s not the space to be doing it in my opinion.
“I think that social media platforms are a positive space for soft service advice and shared experiences of health issues. I don’t think it’s the best place for people to go when self-diagnosing or when they’re looking for specific support.”
The reasons behind creating a TikTok account and producing content is often to gain a following. But when it comes to health, most medical professionals create a TikTok account to share their expertise through an accessible medium.
Ravina Bhanot is the founder of Zonus Fertility, a website that gives women's health information; specifically, fertility, contraception, gynaecological problems like PCOS, low ovarian reserve, fibroids, endometriosis, and sexual health.
Ravina decided to make a TikTok account and share information regarding matters on women’s health after feeling there is a lack of high quality, evidence-based information that is available to young females.
Source: @zonusfertility on TikTok
She also elaborated on the fact that young women do not always feel confident to talk about their problems, so social media may feel more of a safe place to them. “Having medical information that is easily available via an app that many spend large amounts of time on can help improve women's health outcomes,” she said.
Ravina described the positives of health information being shared on social media. She said that social media can be a strong supportive community which encourages discussion among people. Similarly, she added that good quality health information can be found on the platform.
Zonus fertility has proved to be a successful TikTok account as Ravina explained that she has seen no negative responses from the target audience of the content created. “Women have become more aware of issues affecting their bodies. They have used Zonas Hormone Tests to check their ovarian reserve to screen for low egg count,” she said.
However, outside of the target audience, she said some of the male populations have used it as an opportunity to pass judgement on health conditions.
Some health professionals, such as Dr Karan, a NHS doctor and popular TikToker, share short snippets of health information that show great value.
Source: @dr.karanr on TikTok
Meg is a 22-year-old ex-nurse from Kent. She posed the benefits of TikTok content creators like Dr Karan. “Dr Karan often debunks stuff and he sometimes just comes up with cool facts. But I think it's educational, to debunk stuff,” she said.
She added that users are unlikely to question his reliability since he is a NHS doctor. “He’s recognised by the NHS, the NHS do adverts with him, so he’s instantly trustworthy,” she said.
Source: @nhsuk on TikTok
Allan Fox is a GP who works for the Kent Community Health NHS Foundation Trust. After seeing Dr Karan’s TikTok’s for the first time, the GP said he might consider making TikTok’s that include short snippets of information too.
“Dr Karan provides rapid accurate medical information and deserves the following he has. I had not heard of him until now. We should all be using TikTok to provide information! It targets a young audience, keen for knowledge, but also open to misinformation. I think it is wonderful and I will start tomorrow with Dr Fox’s medical facts,” he said.
However, he saw issues with the idea of TikTok being a “source” of health information. “I do not think qualified doctors should use the app to source information, but it is an excellent platform to provide information,” the GP said.
Researching what is on patients’ minds is extremely difficult for medical professionals to do. So TikTok could be considered a valuable way of finding out the latest trends among patients as well as what is bringing them to the doctors.
Ona Croft is a nurse from Wiltshire who works in primary care and also has a keen interest in health promotion and health improvement. Being a Military Wife, Ona moves around a lot, so she has found social media a valuable tool in sharing her expertise.
Ona disagreed with medical professionals using the app as an “evidence-based” source of clinical information. But she said it's a good way for medical professionals to see topics from the patients’ perspective, and to keep up-to-date with topics that are "trending" which patients may wish to discuss.
“I am passionate about health promotion and have found social media to be a good way to share information in an accessible and easily digestible way. For example, every time I post about cervical screening, at least one person gets in touch to say they've finally got round to booking an appointment.
“I see social media more as a means of spreading health information and promoting better health. It can also be used to spread awareness about health topics, but often people will see content that causes them concern regarding their health and will book an appointment with their healthcare provider to get checked out and reassurance.
“I think the more of this information that is out there, the better. It helps to reduce stigma and can help people to navigate their own health issues. People just need to remember to think critically about information they're consuming online,” she said.
The nurse concluded that TikTok could be a place that people go to for health information, but she hopes that it doesn’t end up that people go to TikTok rather than talking to a doctor.
The extent to which TikTok can be relied upon for health information can be summed up by Amelia, the CEO of Suicide and Co. She said social media platforms are like a prescription which should have strict guidelines to follow when being used.
“Social media platforms are for sharing stories and experiences. But any fact or action that users are told to do off this platform should be complemented by their own research or consulting professionals. To me, that should be the prescription like if you’re taking social media as a pill, on the back of the box it should say don’t do anything that you’ve been told to do on here without consulting other resources or professionals,” she said.