Psychiatrist Jessica Gold has noticed a new trend in her practice, at which she primarily treats young adults between the ages of 18 and 34. More and more, patients arrive on her doorstep convinced they have a mental health condition.

How do they know this? They learned about it on TikTok.

Gold, an assistant professor of psychiatry at Washington University School of Medicine in St. Louis and member of the Group for the Advancement of Psychiatry, believes the algorithmic feed model of TikTok partially explains what her patients are seeing.

On TikTok, users tend to be repeatedly exposed to similar types of content. The platform’s algorithm — the inner workings of which are guarded like a state secret — hyper-focuses on the topics and tonality of the videos they watch most, whether clips of cuddly cats or candid discussions of symptoms associated with post-traumatic stress disorder.

“Things like ADHD, autism and trauma are talked about a lot more than they used to be,” Gold says.

But as personal conversations about mental health proliferate on the platform, TikTok’s devotees have become emboldened about self-diagnosing their health conditions. And at least as often as not, they do so inaccurately.

“TikTok’s algorithm is such where, once you watch a video, all the rest of your videos start to look like that video,” Gold continues. “So if you stopped on a video about ADHD or ADHD symptoms, all of your videos become about ADHD. You get bombarded and you start to think, ‘Oh, that sounds like me,’ or ‘that resonates’ or ‘that’s interesting, I didn’t know that was a symptom.’

“Then you start to think, ‘I should’ve been diagnosed with this.’”

Gold’s experience reflects a larger trend that has taken hold in recent years and is poised to expand even further: The rise of the empowered patient — which, according to Publicis Health Media president Andrea Palmer, “takes on a whole new meaning in today’s day and age, given the depth and breadth of information out there.”

More and more, people are turning to TikTok to search for health information. A recent Hall & Partners study found that nearly 18% of the U.S. population — about 59 million people — are listening to, and acting upon, healthcare information provided by social media influencers on TikTok and Instagram. Not surprisingly, that percentage is higher among younger generations, including millennials and members of Gen Z.

In some ways, this is a positive trend. Gold believes the access to vast amounts of information can be useful to both patients and providers.

“Patients will usually have some idea of the symptoms associated with a condition from something they’ve read or seen,” she notes. “To me, that’s not a bad thing. It can actually be helpful.”

But not when the information conveyed via social media platforms is inaccurate or entirely wrong. A recent study conducted by PlushCare, a virtual healthcare platform, found that an overwhelming majority of mental health videos on TikTok — 84% — were misleading.

Meanwhile, a survey of the nurse practitioner/physician’s assistant community jointly conducted by Point of Care

Network and Dentsu Health in February, revealed further insight about the extent to which patients are arming themselves with information prior to their HCP engagements. According to the survey, the self-diagnosis or self-elected treatment regimens gathered by patients in advance of their visits are not always correct.

“While communications from pharmaceutical manufacturers are strictly regulated by the FDA and the information content of those communications is monitored and controlled, the discussions on social media platforms are not subject to the same restrictions,” explains Dentsu Health SVP, global data and insights Lynda Gordon. “In some cases, the content may not be medically proven or validated, but the consumers may not realize this.”

Gordon adds that the confusion often creates an additional burden for frontline providers. “Healthcare providers are tasked with trying to understand patient symptoms and make diagnoses and then provide recommended treatment to address the condition,” she continues. “If a patient has already started to follow social-media sourced medical advice, it can take time and additional probing from the HCP to essentially unravel this dimension of the patient’s history.”

While it has grown exponentially during the current TikTok and Instagram era, the social phenomenon isn’t new. Individuals have sought out information about their medical concerns, and attempted to self-diagnose them, since Google and WebMD went mainstream in the aughts.

“We have this saying that everything starts with search,” Palmer notes. “When patients begin a healthcare journey, it starts with going to Google and looking for information about symptoms, flare-ups, medications, experiences, risks, you name it. The difference now is that young people are opting for TikTok or Instagram instead of a straight Google search, which is fascinating behavior.”

Gen Zers may have been the first to adapt this behavior, but they’re a growing and aging population. That’s why Palmer believes this approach “will be the way of the world moving forward.”

The shift is already being felt in healthcare marketing, which is slowly moving away from traditional ads and into a less structured brand of personal storytelling conveyed via algorithmic feeds.

“It changes marketing. It’s basically taking a waiting room experience and putting it in the palm of your hand,” Palmer adds, noting that people turning to social media for health information “aren’t looking for ads in general; they’re looking for personal experiences. That’s where we’re going to need to pivot to, as marketers, to figure out new ways to be relevant to those expectations.”

The first steps for marketers are likely to be the hardest ones: Finding a way to intersect with patients on TikTok, Instagram and other, more mature social platforms such as Facebook, then figuring out how to be heard amid the overwhelming volume of content. And that’s before they start to add needed nuance to HCP- and patient-focused content and communications.

“It’s a sea of stories,” Gold explains. “People’s stories, feelings and experiences are always true, because they’re their own. Does that mean the doctor who diagnosed them with whatever they have would give the same diagnosis I would? No. It’s valid, but one experience is not at all applicable to everybody, and one experience is not actually scientifically accurate.”

HCPs and marketers must also contend with the multiplying hordes of self-styled patient influencers in order to get the right information to the right patient populations. Palmer points to psoriasis as an early battleground, with prominent TikTokers burnishing their social-media cred by posting videos about their experiences with the skin conditions.

“There are people who are incredibly vocal and visual as they put this personal documentary together about their journey,” Palmer explains.

She remains incredibly impressed by their persistence: “For a disease state that has a couple million people, there are billions of views on that content. In such a small space and small forum, the number of people who are listening and relating to these patients is incredible.”

Source: Getty Images.

Examples abound. In a video with more than 6 million views, TikTok devotee Claire Spurgin urges anyone and everyone to “normalize psoriasis” and eloquently describes how she has been affected by psoriasis. Then there’s TikToker Rosie Daniels, who has amassed a small army of followers with her videos about psoriasis awareness.

Patient influencers may not be famous in the traditional sense of the word, like the celebrities of yesteryear were. That said, they hold considerable power over patients, especially those with similar demographics. In one video, @indiyabolla notes that “Rosie Daniels was the first person who made me feel beautiful while struggling with a skin condition … I look up to this girl so much.”

Palmer understands why the approach has resonated with thousands of viewers.

“I would venture to guess that if I were a psoriasis patient, I would feel that I trusted these women influencers because they have given me such a line of sight into their personal stories that you start to feel like you know them,” she explains, though she’s quick to point to a major downside. “It means HCPs have competition in terms of trust. There’s this person in the patient’s hand that they’ve never met, but in some ways they’ve become more authoritative than the doctor.”

A recent CharityRx study found that 37% of Americans turn to social media influencers for health information because they’re accessible and relatable. Meanwhile, to Palmer’s point, 17% of respondents said they trust influencers even more than they do their doctors.

“That’s the new challenge that HCPs face: They no longer only have to diagnose, prescribe and help manage a condition for their patients. They also have to convince their patients,” she says. “In some ways, they have to win the opinion battle over the people that their patients may consider an expert on TikTok.”

Palmer and Gold agree that the phenomenon isn’t likely to ease anytime soon. That’s why they believe healthcare marketers will need to play a major role in helping HCPs — especially older ones or ones who are outwardly dismissive of social media — better understand the social undercurrents swirling around patient treatment.

“Doctors can’t completely dismiss the fact that somebody might have gotten information from the internet,” Gold says. “It’s our job to hear that information and translate it, then clarify any misinformation.”

Indeed, Gold thinks physicians should “appreciate that patients asked and validate that they showed up. Doctors shouldn’t dismiss that they’re there or that their information came from the internet — because so did most of their own news. Everything comes from the internet.”

Palmer also suggests that healthcare marketers embrace the TikTok phenomenon as an opportunity to be seized upon, rather than a problem to sweep under the carpet.

“There’s acknowledgement and attention to the fact that this is a space for marketers to consider,” she says, noting the wellspring of interest in partnering with patient influencers.

“That represents an incredible step forward because it’s a scary thing to do, but it’s also necessary. I’ve seen the mentality shift from looking at an influencer like an advertorial to looking at an influencer for what they could mean to the patient population. That’s a testament to marketers’ evolution.”

Ultimately, all audiences need to strike a balance between the demands of newly empowered patients, the possible unreliability of their information (or misinformation) sources and the traditional authority of HCPs. It’s a gap best bridged through regular and transparent dialogue.

“This trend is real and we’ll continue to see it, so we need to accept it,” Gold says. “Both sides need to communicate better around it. It’s time to tear the walls down and have open conversations, rather than dismissing everything new as a phenomenon.”