By Lisa Marshall (Jour, PolSci’94; MJour’22)

“Noticing a huge difference in my belly fat. It’s melting away!”

“Wildly happy after losing 70 pounds!”

“Just took my first dose. I’m nervous, but excited!”

In late 2022, TikTok was abuzz with such endorsements, delivered by hopeful dieters clutching blue syringes loaded with the diabetes drug-turned-celebrity “weight-loss miracle” Ozempic. The hashtag #Ozempic swiftly drew more than 1 billion views.

But as the craze went viral, diabetics worldwide faced dangerous shortages. Meanwhile, those using it off-label for its slimming qualities began reporting serious side effects, such as violent diarrhea and extreme facial thinning.

“This is a great example of the power of social media—and the unintended consequences,” said Erin Willis, associate professor of advertising, public relations and media design, and one of the few scholars studying a new kind of social media star—the patient influencer.

Her research has shown they often work closely with pharmaceutical companies, or are paid by them, and frequently offer advice about drugs even though they tend to lack medical expertise.

Ozempic is the most recent example of their power, but the phenomenon dates at least to 2015, when Kim Kardashian drew flack for endorsing a morning sickness drug, Diclegis, on Instagram without mentioning its many side effects. Federal regulators warned the drugmaker, the ad was taken down, and the government implemented new disclosure rules for influencers.

Eight years later, the phenomenon has continued to grow, bleeding into new platforms—like support groups for patients with specific medical conditions—where rules are open to interpretation and nearly impossible to enforce. That’s a concern for Willis: “There is virtually no research on this, and very little regulation.”

Willis has published some of the first academic papers exploring the patient influencer phenomenon, framing it as “the next frontier in direct-to-consumer pharmaceutical marketing.”

DTC marketing is the longstanding practice in the United States and New Zealand that allows drug companies to advertise to consumers, rather than through physicians. From a sales perspective, the practice is effective, according to Willis: About 44% of patients who ask their doctor for a drug they see on TV get it.

But, as always, when it comes to social media, there are plenty of unanswered questions. “The fact that patients with no medical training are broadly sharing drug information should alarm us,” she said.

In her work, Willis interviewed dozens of influencers to better understand their motivations. While the influencers she spoke to appeared to have good intentions, she said some might omit crucial information, such as the availability of a cheaper generic option, or unintentionally disseminate misinformation. And consumers might be unable to distinguish between a personal post and a paid endorsement.

That said, she does see some upsides. Patients often know more than their doctors about what it’s like to experience a specific health condition, and sharing their personal experiences on social media can be comforting for others, while potentially helping them discover new coping strategies.

And unlike other forms of DTC advertising, social media enables followers to weigh in with comments sharing both positive and negative experiences with a specific therapy.

Willis hopes her new research will ultimately lead to a set of best practices for both patient influencers and the companies they work with.

“There is both value and risk here,” she said. “Like anything, it has the potential to become dangerous if we’re not careful.”