Misinformation on TikTok: Contraceptive Myths & Social Media Impact (Episode 592)

Full Transcript: Episode 592

Lisa Hendrickson-Jack:

This is the Fertility Friday podcast, episode number 592.

Today I’m sharing a brand new episode in the FAM research series, and what we are going to be covering today is this topic of “misinformation on TikTok.” A recent paper came out, and the title of the article is, “Do you know what birth control actually does to your body?” So it’s assessing contraceptive information on TikTok. There has been a recent wave of studies like this one that I have taken an interest in, and I’ve shared on the podcast throughout the year. There’s more and more researchers specifically looking at social media and the impact of social media on the information that people are deriving about their contraceptive choices and hormonal health choices, and there seems to be this general kind of fear of the establishment losing the plot. So the way that I look at it is that for many, many years, the medical professionals basically had the final say. They were the gatekeepers of all the information. What they said largely went unchallenged and there was no real social discourse about their practices. So you would go to your doctor’s office, your doctor would tell you what you need to do and you would either do it or not, but you didn’t really have an open social forum to discuss this critically and to kind of throw out those ideas.

And so with the landscape changing so much, with the advent of social media, with now the ability for women to go online and talk about what’s happening to them, share videos, and regardless of your medical credentials, you can go out there and say whatever you want. Now the medical professionals are starting to kind of see, oh wait, this is having an impact on the conversations that I’m having in my office. Now all these women are coming in with these different ideas that we did not provide for them and they’re having to contend with that. And so that’s one of the reasons why I’ve been paying attention to this space and I’ve been sharing this information and these papers because I think it’s important to see how they’re responding to it and also what the implications are — whether you are a medical professional, whether you’re a women’s health professional, whether you’re just trying to live your best life and not have period pain and hormonal issues. I think it’s really important to look at how these kind of bigger bodies are dealing with the advent of social media. So we’re going to dive into this paper today.

And so basically the way that they did it is they started by kind of acknowledging what TikTok is and what it’s become. So they share some interesting stats. According to what they are saying here, TikTok has over 2 billion users. So they’re kind of stating some of this background information that since it officially launched in 2017, it has now amassed an incredible amount of users and also that it offers certain kind of specific differences. Each social media platform is a little bit different. TikTok obviously specializes in short-form video, and one of the things that they said — so a quote from the paper — is: TikTok is well known for its recommendation algorithm, which utilizes personal interaction data to suggest videos and keep users engaged with the platform. So like a lot of different social media tools nowadays, if you watch, it’s not even — what’s interesting is it’s kind of sinister. I don’t know if you’ve noticed this, but if you like certain things and you have your idea of what you officially like, it’s not necessarily going to show you that. Some of these algorithms seem to be designed to give you more of what you actually look at. So you might think, I like this kind of stuff, but whatever you actually look at, when they’re clocking your every move and they can see the videos that you spend the most time on, those are the videos that they actually serve up more. So I think that is an interesting point, but basically it’s saying that it just gives you more of what you are looking at because of course the app is designed to keep you on the app. The algorithm wants your attention because of course many of these platforms are monetized and so you are the product, and whoever is able to kind of keep the most attention of the users — that’s the whole point. So that’s something to be aware of.

But the researchers bring this up because they’re saying that this whole thing, this whole system of feeding you more of what you’re interested in, can create essentially a bubble for you. And so there are problematic aspects of this. So for example, I’ve heard of situations where perhaps a woman is on there looking at accounts that are talking about anorexia, a highly problematic and potentially fatal situation. And so if you’re on there and that’s the kind of content it keeps serving up and you’re in this bubble, then you can end up with a very skewed view of the world. So while it can be, I suppose, useful in some sense because you’re seeing things you’re interested in, especially for younger people who have not necessarily had a lot of life experience, it could be serving up a very narrow view of the world. And this is something that outside of this study and this conversation, this is certainly something that has come up in our programs, because when you’re working with clients, if your client is following a very specific limited dietary pattern, for example, if they’re on social media, likely all of the people that they follow or most of the information that they’re watching is from that specific narrow viewpoint. And so there are obviously problems with this way that the world is. And I’m certainly old enough to have grown up without social media at all. Social media didn’t even exist until I graduated from university. So I can certainly see some of the potential issues with this.

Okay. But that’s how they start the paper by providing some background information and kind of showing why they’re looking at it. And so basically what they’re saying is these platforms are huge. They also go into how many views these videos are getting and how many likes and shares they’re getting. So basically, they’re acknowledging these platforms are garnering huge audiences, and so potentially their influence could be greater than the medical establishment. Now, I don’t know if that’s necessarily true because we still have a very well-established medical situation here, but I think the tide is essentially turning a little bit, and so these papers are intended to kind of explore what they can do about it. So that’s a little bit about the background.

And one of my critiques of these types of papers is with how they define misinformation. In this paper, they don’t directly define what they term as misinformation or misleading information. But as has been the case in many of these papers that are evaluating the validity of social media content, they generally define misinformation as information that goes against the consensus. And so they’re looking at what is the medical establishment’s viewpoint on this topic. Are these people online posting information that matches with that kind of established viewpoint? And if not, you’re often automatically put into this category of misinformation, regardless of whether or not the information is actually true. So this term of misinformation or misleading typically is not necessarily related to the actual factual scientific validity of that statement, but more so how closely it matches to their consensus of what they say.

So this paper in particular is looking at contraceptives. They’re looking at contraceptive information and they used specific hashtags. They created a list of specific hashtags and looked for videos that had the highest views. And so they examined 100 videos between a defined period of time based on their kind of process of identifying hashtags that would be relevant to the topics that they were looking at — to determine the validity according to them of these videos, where it’s coming from, who’s creating them, and all of that. So it is a really interesting review of what is happening essentially on social media.

So I’ll give you a couple of direct quotes from the study just to get a feel for some of the things that they’re highlighting. So one of the direct quotes from the study is: “Misinformation is especially prevalent in videos concerning hormonal contraception when uploaded by self-proclaimed experts or non-health professionals whose knowledge is often based on personal experiences or beliefs. In conjunction with personal opinion videos that discuss negative experiences with the contraceptive pill, such content may shape viewers’ beliefs and choices regarding contraception and foster distrust in conventional health care, potentially increasing the risk of unwanted pregnancies.”

Basically, the videos that they were looking at are videos that are critical of hormonal contraception for the most part, and also videos that are presenting other alternatives. So they’re looking at the pill, how people are talking about the pill, and basically any video where a woman is kind of sharing her personal experience of it — they’re concerned that it’s going to present it in a negative light. And then they also specifically are looking at any accounts that are talking about fertility awareness-based methods or other “natural contraceptive methods.” And they don’t look at these situations favorably.

So I’ll give you another direct quote just to give you a sense of how they’re looking at things. Quote: “Another example of how misinformation on TikTok may influence reproductive choices through shaping contraceptive beliefs can be seen through the millions of TikTok videos that promote the effectiveness of natural birth control methods such as fertility awareness-based methods, FABMs, that aim to identify the fertile window by tracking biomarkers for ovulation, including basal body temperature and cervical mucus.” The researchers go on to say: “While these methods can be effective and are a valid choice for many people using contraception, the success of FABMs in pregnancy prevention depends on several additional factors, including the method used.”

So this actually sounds pretty open. When I was first reading through the paper, I was like, actually, that sounds pretty reasonable. While they’re valid — and so they’re kind of acknowledging the validity. But if you go on further, that’s not really how they’re looking at it. They don’t really consider fertility awareness-based methods to be effective. And the reason that I say that is because later on in the paper, they make a different statement that is not as forgiving or not as balanced.

The researchers go on to say that TikTok influencers who endorse these fertility trackers — so they’re kind of conflating fertility awareness-based methods with fertility trackers, which I think is interesting, they didn’t really skip a beat there — TikTok influencers who endorse these fertility trackers often fail to disclose the lack of evidence supporting their effectiveness when used incorrectly. Furthermore, they also fail to mention that FABMs for pregnancy prevention are generally ineffective as standalone methods, thereby misleading young viewers and potentially contributing to unwanted pregnancies.

So I find this interesting because this was in one paragraph. They’re saying it could be an effective choice for people, but then they’re simultaneously also saying that they are ineffective as a standalone method. So they’re fully contradicting themselves here, which is interesting. But the bottom line is that inherently anybody who is presenting non-hormonal birth control methods, particularly fertility awareness-based methods, is considered to be putting out misleading information or misinformation because of their stance that the methods are ineffective.

So that I think is a useful way to kind of frame how they’re looking at these methods. And I think the bigger elephant in the room is that you can never provide fully accurate and complete health information in a video that is like three to five minutes long. We’ve created a nine-month practitioner program where we meet our practitioners every week. We have online recorded training modules as well as classes. I have written multiple books. We have significant recommended and required reading for our practitioners. There is zero chance that if you go to my Instagram account — even though I’ve been sharing information about fertility awareness for decades — there is zero chance that you will get a full education about how to use a specific method correctly from that post, video, any of that. Because it’s a whole thing. You have to learn how to do it. There’s books that you should read. There’s trainings you should watch. There’s activities that you need to do. You actually have to practice and you have to chart your information. You have to learn how to overcome some of the challenges when your charts don’t match up or make sense. You have to know how to handle it if your cervical mucus isn’t optimal and what could be causing that, and why the temperature might be unreliable in this particular cycle or how to take your temperature correctly so that it can become more reliable. There’s a whole thing that has to happen.

So there’s zero chance that any social media post is ever going to provide complete information about any topic. It’s just not possible. Social media gives us snippets of information. It can spark our interest in certain topics and it can certainly provide some level of education, but it’s really the start of someone’s journey. You would think that if somebody discovers something about fertility awareness on TikTok, if they think that they’re going to look at a couple TikTok videos and then start using the method — that’s obviously not going to be effective. But I don’t know that that is what the intention is for that information. And there also has to be some consumer education so that when people are consuming this information, they don’t actually think that it’s complete, and they would recognize that they would have to do a significant amount of personal research and kind of recon to figure out what’s going on.

But it is interesting to read these papers because they’re kind of highly critical of people putting out information, and even in their study design, they have this specific tool that they use to assess the validity of the social media content. And the tool is pretty robust — they’re looking at all of these different standards in terms of whether they presented a full definition of what they’re talking about and whether they stated the intention of it and all this. None of that is happening in a one-minute to two-minute TikTok video. So even the tool that they used to assess the validity of the social media responses wasn’t designed to assess short-form social media content. It was designed to assess written medical content. So I feel like there is something to be said for that.

So anyway, the researchers searched TikTok for the most popular contraception hashtags. They picked the top 100 videos. They looked at who made each video. They looked at what type of content it was, like if it was advice, if it was a personal story, if it was an opinion. They identified whether it showed distrust or trust in doctors or hormonal birth control. They judged the quality of the information using that tool that was not designed to assess social media content, and then they compared this information. So again, what’s interesting is that they are in this paper singling out as a criterion whether or not you are promoting hormonal birth control.

They did have a fairly narrow definition of what qualifies as a medical health professional — so doctors, nurses, midwives, pharmacists. That’s it. So anybody who is not a doctor, midwife, pharmacist, or nurse — they are not a medical professional. They would be either lumped into what they term general uploaders, so just random lay people, or they also kind of made a specific distinction for people who call themselves hormone health coaches or health educators.

And so what they found was that the majority of the information uploaded on TikTok is from general uploaders — almost 60% of the videos. About 30% of the videos were put out by individuals who called themselves health coaches or health educators. Medical professionals contributed 10% of the videos, and certain companies uploaded only 2%.

The videos that they looked at received a total of 4.85 billion views. The median was about 300,000 views, and the views ranged from 5,000 views to almost 90 billion views. The shortest video was four seconds. The longest video was 215 seconds. TikTok is not a place that anybody could really think, “I’m going to go to TikTok and get a PhD.” It is making an impact, but it lends itself to very short snippets of information that provide just a little kind of taste of something, but you’ll never get the full story from a three or four-minute video.

These videos had a total of 14.6 million likes and on average they were shared about 244 times, favorited 1,500 times, and the average creator had about 76,000 followers.

Of course, when they’re looking at this type of content, they’re acknowledging that there is a general distrust towards hormonal contraception. And one thing I want to say is, as I shift into how they interpreted the results, I was actually pleasantly surprised. I was expecting them to come in all guns blazing. So while I’m fully critical of the things that I’ve said so far, I feel like they came on really strong like, all this information is misinformation and whatever. But then when they actually were discussing what they found, they are really having to contend with this problem.

So you can either just get mad at these millions of people out there who are clearly looking for alternative forms of information and clearly wanting to have this social discourse about their experiences of hormonal contraception, of their desire to potentially look towards more natural methods and their desire to balance their hormones. These are like terms now that social media companies are identifying and downgrading reach of — things like “balance your hormones,” things like “fix your periods,” things like “support natural fertility.” These are things that they’re actually clamping down on. But the reality is that obviously there’s a huge population of women who are dissatisfied with the standard of care. And so that’s why these videos are getting billions of views.

They did say that 53% of the creators of this content explicitly rejected hormonal birth control. And another thing that I thought was interesting — they said the most frequently discussed contraceptive methods were fertility awareness and cycle tracking at 38%, and the pill at 35%. Reflecting the dichotomy between natural birth control methods and hormonal contraception. So they’re seeing this. When I started learning about fertility awareness, it was definitely not a thing. There was not like millions of people talking about it. The interest is growing. And so the medical establishment is at a crossroads here. It’s either we’re going to keep saying it’s ineffective, or they have to actually learn about it and look at the evidence-based methods. Fertility awareness-based methods — there’s a lot of evidence behind them. So it’s either you’re going to dismiss it out of hand and just pretend like it’s not happening, or you’re going to look at the situation, start to look at the research on different fertility awareness-based methods, become familiar with the most and least effective in terms of what the research has to say, the differences as to why some are more effective than others, and actually start to understand it.

So there was an interesting quote. When they get into the discussion, I was pleasantly surprised. One of the quotes from their discussion was: “A general distrust towards hormonal contraception is, according to this one researcher, fueled by health professionals’ persistent focus on its safety and high effectiveness in preventing pregnancies rather than on the potential side effects.” They go on to say: “A provider-driven decision-making process in contraceptive counseling, which fails to include information that reflects social norms and concerns, has proven to result in decreased satisfaction with the final chosen contraceptive method.”

So the researchers, after kind of blasting all of these non-medical professional social influencers that are putting out this information, are also having to acknowledge why it’s happening. All of these women are going online and they’re saying, I had this side effect. This was bad. I don’t like contraceptives. And they’re not being quiet about it. The point is that you have this whole population of women that are saying, I went to my doctor. I told them about the side effects. They didn’t believe me. They wanted to put me on a different one and a different one and a different one. They weren’t listening to me. So now I don’t trust them anymore, and now I’m going outside of the medical system to get my information.

And like I said, I was pleasantly surprised to actually see them acknowledge this, because what I think as women — what we’re used to — is us making a complaint and then them just ignoring it, or them just pretending like it’s not happening and us being gaslighted. But now they’re kind of having to address it.

So another quote from the paper: “When shared decision-making expectations are unmet, patients may perceive this as a subtle form of coercion, favoring hormonal contraception and thus a violation of their rights. They might feel pressured, dismissed, and even deceived by medical professionals. Consequently, TikTok may serve as an important platform which gives voice to women’s lived experiences of distrust in health professional advice and the treatments they recommend.”

That was a quote from the study. That was the most clear acknowledgement of what’s happening. They actually put it into words. The patient is coming in saying, I don’t just want you to shove your prescription down my throat. I’m coming here because I have this problem and I would like to have a conversation about how I can solve it. But then when I say I’m thinking about these non-hormonal methods, when I say I want to balance my hormones and you tell me that it’s a fairy tale and to stop looking on Google — then it is no longer a shared decision-making process. It becomes a top-down, parent-child situation where you tell me what I need to do and you’re not listening. That’s exactly what they said. Patients may perceive this as a subtle form of coercion, favoring hormonal contraception, and thus a violation of their rights. They may feel pressured, dismissed, and even deceived by medical professionals. Yes. That’s what we’ve been saying for decades. And now you’ve put it in the paper.

So there was something else I want to say along these lines, which I also found to be very powerful: “For example, multiple TikTok users express their disapproval of standard contraceptive counseling practices, instead advocating for advice from hormone health coaches or health educators over medical professionals. A simple Google search of these terms yields numerous blogs and websites offering advice not typically addressed in a healthcare setting. Recent research suggests that this increasing reliance on social media for health information from individuals, whether qualified or not, is reshaping the patient-provider relationship into one where providers act merely as gatekeepers for obtaining prescriptions.”

So this is the most powerful acknowledgement of what’s really happening that I have read. A lot of the research that I have read is just more gaslighting. But here we have in black and white in this research paper, they’re acknowledging that women are going to healthcare professionals, they’re not being heard, they’re not being listened to, their concerns are not being met. And so now they’ve turned against the medical system, because they’re not getting the answers that they’re looking for and they’re going to other sources of support to actually get their problems met.

I can guarantee you that in our practitioner program, when we are teaching the nitty-gritty details about advanced menstrual charting and chart interpretation — that is not a thing that you’re going to get in your conventional medical setting because it’s not taught in medical school. So therefore you can’t have that there. And so I feel like this is kind of like the beginning of maybe a reckoning. They’re saying that if we don’t do something about this, then we’re going to lose a big part of our patient population. They’re not going to come to us for support. They’re basically going to come to us just as a pill pusher.

What I do find interesting about this paper is the discussion. I was impressed — and that’s hard. But I was impressed by the honesty. They’re seeing what’s happening. They’re not completely ignoring what the patients are saying. And they’re trying to actually provide a meaningful assessment of what the implications are for the medical profession.

So their conclusions: TikTok is a major source of contraceptive information for young people. From their view, the platform is dominated by “negative personal narratives” and misinformation. They’re saying healthcare providers are underrepresented on these platforms, and they feel that the healthcare providers’ information is more accurate based on their standards — but they’re also saying there’s a pressing need for health professionals and educators to engage on there, providing balanced, evidence-based information. And some of the things that they’re saying are that healthcare providers actually need to understand the challenges that their patients are facing. They actually have to start listening to their patients, because if your patients are searching for certain types of information that you don’t provide, and their needs are not being met, they’re going to go elsewhere.

Specifically, they say healthcare providers must acknowledge that young adults may obtain information about contraceptive methods from social media platforms like TikTok, and it’s essential for providers to incorporate this awareness into their contraceptive counseling, ensuring that any biases regarding hormonal contraceptives are addressed.

I think though, for this audience, for our FAMM practitioners, or for any women’s health practitioner who is concerned about women’s health, women’s hormone health, menstrual cycle health — for us in this field who are looking to support our clients in a more meaningful way, there are conclusions that we can take from what they found. Women really are dissatisfied with the care overwhelmingly. There is a huge portion of women out there who are becoming aware of the limitations of hormonal contraception. I’ve always done my best to be as neutral as I can when I talk about hormonal contraception. I talk about the side effects in detail based on what the research has to say and acknowledge that for many women this is a valid and important choice. I would never want contraceptives to be taken away completely because I think that they are important.

As women’s health professionals, we have to take the information online for what it is. If you are a women’s health professional who is working with clients, then if this comes up and if your clients have concerns, there is something to be said for having some level of understanding about what the platform is, taking it for what it is, and doing our best to find valid sources of information. There is some risk in getting primarily a lot of information from various social media platforms. At the end of the day, anybody can go on there and say anything, and people can lie about their expertise and their certification. So I think as women’s health professionals, if you are using social media, I would say it’s time to up your game. Let’s try to keep it as evidence-based as we can. I’ve always tried to put out evidence-based information. I’ll cite the sources. I always put those citations in there if anyone wants to verify the information. My whole career in this field has really revolved around — don’t just take my word for it. We’ll provide the receipts and you can take a deeper look into that if you want to.

Anybody who’s working within the fertility awareness field — it is up to you to provide the evidence-based information about fertility awareness-based methods. This is a small field, and I’ve watched it grow since I’ve been in it, but it’s still a small field. Obviously within the medical profession, it is not their favorite thing. It is this inconvenient problem that they’re having to contend with as more and more women come into their offices saying that they want non-hormonal methods and asking about it. There’s a huge bias against fertility awareness-based methods. There’s a huge misconception that they are ineffective in all circumstances, and that is because it is not taught in medical school. So doctors are not reading peer-reviewed research papers that have been published about fertility awareness-based methods. They may or may not be able to actually list even three or four of the established fertility awareness-based methods that have been extensively studied.

So as women’s health professionals, it is up to us to provide evidence-based, accurate information and to move away from our personal biases. If you have a personal bias against birth control, but you have a client who wants to use it for a period of time or has her own reasons for it — sometimes it might be hard to do that, but our goal shouldn’t be to present opinions to people and try to force them to do what we would do. The more professional thing to do is to actually provide research and information and to understand and respect the choices that your clients might make, even if the choices are different from what you would make. And the same thing applies to fertility awareness-based methods.

The problem is that we have not been provided with full and accurate information about the things that we need. We’re going to doctors and they’re just telling us to use these prescriptions, but they’re not necessarily providing us with a list of the side effects. We’re leaving taking medications that we don’t even know the side effects of. And so then when women Google to find out, well, why am I having these panic attacks? And why do I have low libido? Why all of a sudden do I have painful sex? All of the things that happen — even some of the strange side effects like gallbladder issues — there are so many different issues that are associated with pill use, but zero women who leave their doctor’s office with a prescription for the pill are provided with a full side effect profile.

So from my perspective, the biggest issue is the lack of information. And if we’re out there, if you’re a women’s health professional, if you’re posting out information on social media channels, I think it’s up to us to provide the accurate evidence-based information to the best of our ability. And obviously it’s not going to be complete — it can’t be complete in a social post — but we can at least do something to elevate this conversation.

So those are my thoughts on today’s paper. I hope that you enjoyed it. This topic has been really interesting to me because I do see this growing amount of research in this area. They really are having to contend with the fact that women are going outside of the medical system and the medical system is losing the narrative here. They have had this narrative. They’ve been in their little bubble for so long, and now women are coming out saying, look, I didn’t have a good experience with this. My doctor didn’t help me when I asked about this. So it’s kind of like, what are you going to do about it? Are you going to continue providing subpar advice and support for women, or are you going to actually look at what you’re teaching in medical school and try to adapt to what women actually need? And we’ll see.

If you can think of somebody who would benefit from hearing today’s episode, the share link for today’s episode is fertilityfriday.com/592. I just want to thank everybody who has shared the podcast, who shared my books — The Fifth Vital Sign, Real Food for Fertility — and who has just spread the word about this podcast. This podcast and this community has largely grown based on word of mouth. It’s really been a passion project for many years — just to increase awareness about fertility awareness-based methods, and just the importance of having information about how our body works, how our cycles work, and how we can be empowered with that information to improve our health. At the end of the day, we want to feel good. We don’t want to feel badly. And if we’re not getting the support from our medical professionals, where else are we going to find this information?

So with that said, I hope you have a wonderful week, whenever you’re tuning in to the show. And of course, as always, until next time, be well and happy charting.