Urological Misinformation on Social Media Is Worse Than You Think

Online medical misinformation has grown to be such a problem that three separate studies on the topic were presented at the 2022 American Urological Association conference. The studies honed in on subjects such as the shocking ratio of misinformation to quality information on men's health topics on social media, the spread of "bro-science" regarding testosterone replacement therapy (TRT) and misinformation on urinary tract infections (UTIs) in women.

In this four-part series, we'll look at what the studies revealed and speak with some of the doctors who wrote these reports. Plus, we'll check in with some frontline healthcare providers to get their take on the proliferation of online urological misinformation and some ways they try to combat it in their own practices.

Plenty of social media channels are run by ethical healthcare professionals and offer quality information. But we may just have to accept as fact that people today—particularly younger people—are often more apt to seek information in short, snappy video form rather than in dry reports and studies. As engrossing as these 30-second videos may be, it's difficult (or impossible) to get across real, accurate information in such a short time frame.

Let's face it: All kinds of people, even doctors, research medical issues on the internet.

"I appreciate when folks look online for information. I do the same," said Amy Pearlman, M.D., the director of men's health at the Carver College of Medicine at University of Iowa Health Care. "It's great when people come in somewhat knowledgeable about their condition and treatment options. The difficult part is that laypeople don't necessarily know what information they can trust."

One issue with finding trustworthy information online is that the number of people seeking medical advice on the internet has skyrocketed, especially in the age of pandemic isolation. If there's one thing social media content creators are really, really good at, it's following the eyeballs, chasing clicks and giving people what they want.

"Seventy-two percent of adults use the internet in researching health information," said Justin Dubin, M.D., a specialist in male infertility and sexual medicine who has just been tapped to be director of men's health at Memorial Healthcare Systems in Hollywood, Florida. "And since COVID, there's been an increase of about 40 to 70 percent of users seeking medical information on online digital platforms. Since 2021, 72 percent of U.S. adults use at least one social media site, including at least 66 percent of men. So you know this is a big resource for them."

Dubin is the lead author of one of the three studies presented at the 2022 AUA conference that examined social media and urological misinformation.

The issue isn't really how many people use websites or even social media platforms to seek medical information. As a jumping-off point to begin researching health conditions or ways to improve yourself, the internet can offer a wealth of information.

The problem is that it's almost impossible to know who is presenting the information on these platforms. Apart from trusted sources such as the AUA-run website Urology Care Foundation, Cleveland Clinic's expansive site or other sites run by accredited medical institutions, you just don't know who's talking to you in these online videos. You don't know what their agenda might be, what their qualifications are or where they're getting their information.

It's difficult to overstate the reach that people like rellchosen7 and other "influencers" have in disseminating dubious medical advice. It was certainly a surprise to Dubin and his team. They researched six topics on Instagram and TikTok: vasectomy, Peyronie's disease, erectile dysfunction, testosterone, male infertility and semen retention.

What they found was very few medical professionals and a whole lot of nonsense.

"I expected there to be some misinformation out there, but I was pretty shocked at how much was out there," Dubin said. "And not only how much was out there, but how much engagement there was with that misinformation. Patients come in and they talk about natural options for increasing testosterone; they talk about ways to improve their erections without medicine and other things that are kind of fringey.

"So it led me to go online and see what was on TikTok and Instagram and Twitter, and there was just an outstanding amount of bad information. And pretty much everything I saw was not given by doctors; it was advice given by random dudes. Yet they had hundreds of thousands of likes and follows," he said.

Women don't have it much better. Another of the three studies presented at the conference focused on YouTube videos that detailed how to prevent urinary tract infections and how to treat them at home.

Zhenyue Huang, M.D., a urologist with Stony Brook Medicine in New York, was the lead author of the study, which looked at 54 of the top-viewed UTI videos on YouTube. Collectively, they had more than 12 million views.

Huang and her team found one-third of the videos presented misleading information, and less than one-quarter of them featured a urologist. As is so often the case with medical "educational" videos, home remedies were big, featuring in more than two-thirds of the videos. (We'll go into more depth on each of these studies in later installments of this series.)

For practitioners such as Huang, Dubin and Pearlman, these kinds of numbers are alarming, to say the least.

What's perhaps even more troubling, though, is how many content creators appear to be straight-up grifting their audiences. It's one thing when a young guy seeking clicks and clout latches on to some dubious medical information he doesn't really understand and perpetuates his own error by posting videos about it. But it's quite another thing when creators are hawking products and services under the thin guise of presenting an educational video. When content creators—whether they're doctors or not—directly feed their audiences bad information to boost their income stream, you could argue that we're now shifting into something approaching fraud and deception.

"Therapies are 'oversold' online, meaning therapies with little to no research showing benefit are marketed as having huge therapeutic benefit," Pearlman explained. "The danger is that people will spend thousands of dollars on these therapies, not realizing they may not work. People ask about over-the-counter supplements, testosterone, shockwave therapy, platelet-rich plasma, [and] a variety of hormone therapies, including peptides. And just because someone has a degree behind their name doesn't necessarily mean they're providing evidence-based information."

While some of these misinformation-laden videos are just silly, they still shouldn't be dismissed as completely harmless.

Supplements claiming to enhance testosterone aren't approved by the Food and Drug Administration for safety and effectiveness and can contain pretty much anything. If you're taking other medication, you may be unknowingly exposing yourself to risky drug interactions.

Home remedies for UTIs don't always work, either. The risks for women who leave UTIs untreated can include permanent kidney damage and more.

Mostly, however, people can end up spending hundreds, or even thousands, of dollars on products that will only leave them frustrated at the lack of results—and with a lighter wallet.

"You see other kinds of supplements that claim to do things and you could potentially be wasting a lot of money. And these supplements, they're usually not FDA-regulated," Dubin said. "We have no idea what they're putting in them. You see ads with people—this was all over Fox News—making claims around tanning your balls [meant to increase testosterone]...I guess you could burn your balls. That doesn't sound great to me."

People are going to use the internet to research whatever they're curious about. But healthcare providers hope people consider the sources more carefully. If someone is claiming to be a medical professional, check if they're verified, because without that verified blue check mark, they could be anyone.

Verification is just the first step. Next, do some research into where they studied, their qualifications and their specialty. If it's a chiropractor who's all-in on selling you a sonic-wave device to help your erections, you might want to take a closer look before plunking down your hard-earned cash.

As both Dubin and Pearlman pointed out, just because someone is a doctor doesn't mean they're giving you good information.

"There's a lot of people who have blue check marks who don't necessarily practice good medicine," Dubin said. "If you do get information from what seems to be a medical professional, I think the first thing to do before taking their advice is look them up online; where they are, what they're practicing. A lot of the topics, especially men's health topics, these are really super-subspecialized topics. Sometimes it's even hard for doctors to know if someone's a true expert or not."

If the first step is researching the topic and the second is researching the person presenting the information, the third step should be to get a second opinion on that information. Urologists urge people to take the time to talk with them before embarking on any treatment regimen or preventive plan (or before spending money on products or services offered online).

Getting a second opinion before following the medical advice of a 19-year-old TikTok creator who recorded a video on his phone while sitting in his car seems like the bare minimum of due diligence.

"You can do your own research, and I'm OK with that," Dubin said. "You can go into the depths of Reddit or the depths of TikTok or Instagram. But I wouldn't go straight off of that. I would talk with your doctor. Before engaging in something that could compromise your health, for better or worse, even if you're thinking about doing something because it might be better for your health, you should talk to a doctor about it.

"That's literally what we're here for."