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The advice you get from ‘patient influencers’ on social media platforms like TikTok can sometimes be misleading or unsafe. Westend61/Getty Images
  • Pharmaceutical companies are increasingly partnering with “patient influencers” who share their personal stories and advocate for brands in online health forums and on social media.
  • Medical experts are concerned the public may be misled by patient influencers.
  • Healthy skepticism and trust in reliable sources can help navigate input from influencers.

Real-life people sharing their personal health journeys often resonates with others living with the same condition. Hearing about their day-to-day struggles, coping mechanisms, and sentiments of hope can help their followers cope.

However, when “patient influencers” advocate for brands, pharmaceuticals, or medical devices in online health forums and on social media, medical experts are concerned about the effect this may have on overall health for the population.

“Patients have always connected with other patients online—this is not a new phenomenon. What is new, however, is that patients are using social media platforms like Instagram, TikTok, etc., to share their disease experience, and for many, that includes experience with pharmaceutical medications,” Erin Willis, PhD, an associate professor at the University of Colorado Boulder, told Healthline.

Dr. Willis authored a paper published in the Journal of Medical Internet Research that shines a light on the promise and peril of what she calls “the next frontier in direct-to-consumer marketing.” She calls on the academic community to take a closer look at patient influencers.

“In some instances, patients are collaborating with pharmaceutical companies because of these patient influencers’ ability to reach niche audiences of patients, and due to patients’ credibility (in comparison to the public’s trust of pharmaceutical companies),” Willis said.

On one hand, this approach may be more of the same, according to Dr. William Schaffner, a professor of preventive medicine and infectious diseases at Vanderbilt University Medical Center in Nashville.

“There have been patient interest groups, for example, for all kinds of illnesses and we physicians often refer our patients to those patient interest groups because they can communicate and share day-to-day experiences that are helpful in coping with illnesses on an on-the-ground level and that goes beyond a lot of what doctors are capable of doing, have the time for, or have the personal experience of,” Schaffner told Healthline.

Dr. Natasha Bhuyan, a family physician in Phoenix, Arizona, agreed. She said patients speaking out about their medical journey or experiences with treatment can be positive.

“It helps other patients feel connected to a larger community, especially related to things like chronic diseases or rare conditions. However, it’s important to keep in mind that this is one person’s experience, and their health journey may not apply to everyone,” Bhuyan told Healthline.

The difference between patient support groups and “patient influencers” to which Willis is calling attention, is that most patients in support or interest groups are not paid for sharing their experience.

“Patient influencers being paid by the company is a very different thing than companies giving money to a patient interest group,” said Schaffner.

And if patient influencers don’t reveal that they are paid by a company to promote their medication, then they could be masquerading as an interested patient.

“In science, we’re supposed to display our potential conflicts of interest. In these circumstances, if they don’t have to say they’re paid, people should know that,” Schaffner said.

For instance, he pointed out that television commercials for medications and treatments, which have long been sponsored by pharmaceutical companies, state their sponsorship clearly in the commercials.

“These commercials always have people’s stories; they don’t just state data. It’s a fundamental concept that you put a face to a story. This is one of the great difficulties we have in science because we put the data forward whereas advertisers and other communicators put stories and persons forward,” said Schaffner.

In this case, moving into social media seems like a logical extension of direct-to-consumer advertising from the pharmaceutical companies’ perspective, he added.

“Finding out who the ‘important’ influencers are and giving them opportunities through social media to connect with people can be persuasive,” Schaffner said.

Some regulations in place may apply to patient influencers. For instance, in 2015, Kim Kardashian endorsed the morning sickness medication Diclegis in an Instagram post. However, she and the drug manufacturer Duchesnay were found to have violated Food and Drug Administration (FDA) regulations by not properly disclosing the risks and side effects of the drug in Kardashian’s post.

Additionally, in 2019, the Federal Trade Commission (FTC), which works to stop deceptive ads, published the document “Disclosures 101 for Social Media Influencers” to notify influencers about their legal responsibility when it comes to making disclosures, as well as tips for when and how to make good disclosures. The document also states that influencers:

  • Can’t talk about their experience with a product they haven’t tried.
  • If paid to talk about a product and they thought it was terrible, they can’t say it’s terrific.
  • Can’t make up claims about a product that would require proof the advertiser doesn’t have, such as scientific proof that a product can treat a health condition.

Still, Willis pointed out that government regulations lag behind, and have not been updated since 2014, which puts patient’s safety at risk.

“So little is known about these patient influencers. Scholars have studied direct-to-consumer [DTC] pharmaceutical advertising since it was legalized in the U.S. I think some of the same risks of DTC advertising exist for patient influencers,” she said.

The public should be concerned about misinformation, health literacy (or the lack thereof), and the variance of medical knowledge among patients, Willis added.

“We should also be concerned about the functions of the technology that make regulation difficult. For instance, Instagram’s stories or any sort of direct message. The FDA and FTC should consider not only the practice of patient influencers, but also the technology of various platforms,” she said.

Willis is calling for more research “to understand where influence happens versus advocacy, and what the difference is in relation to pharmaceutical drugs.”

In 2020, the FDA announced plans to conduct two studies evaluating different types of endorsers (celebrity, physician, patient, influencer) and whether the presence of a disclosure of their payment status influences participant reaction.

The same year, the FTC released a request for comments on its “Guides Concerning the Use of Endorsements and Testimonials in Advertising” (the Endorsement Guides), to evaluate if its enforcement efforts help stop misleading online marketing that occurs from influencers, social media posts, reviews, and other online resources.

Until more research is conducted and more regulation is in place, Schaffner stressed the importance of the public becoming aware of whether or not the FDA knows about patient influencers they follow, as well as the reality that even if the administration puts appropriate regulations in place for patient influencers, it may be limited in its resources to monitor them.

“I wouldn’t be surprised that the innovative people in these pharmaceutical companies are doing something new that people in the regulatory agencies didn’t think about when making legislation and that the legislation needs to be updated to encompass these new and innovative kinds of activities,” Schaffner said.

While hearing other’s health stories can bring perspective and connection, Bhuyan said keep in mind that your primary health influencer should be your personal doctor.

“Your family physician…understands your unique medical history and needs. Failure to consult your doctor before trying new treatments may lead to patients mistreating themselves with things like supplements or other medications that either don’t have a benefit or could potentially be harmful,” she said.

She suggested using an influencer’s story as a conversation starter with your doctor and allowing them to navigate you towards the best medicine for your needs. Asking your doctor for five minutes of their time to cover a few questions related to something you saw an influencer talk about will most likely grab their attention, added Schaffner.

In fact, Bhuyan noted: “I always love having conversations with my patients about things they’ve heard or read and sharing medical background or context with them.”

Because a lot of misinformation circulates, maintaining healthy skepticism about health information presented in any way online or on social media is a good rule to follow, too.

“The internet is notorious for being unreliable. For a layperson sorting out what’s rigorous from what’s spurious is enormously difficult, made even more difficult because in this era of lack of trust in traditional authority and therefore lack of trust in traditional science, there is often a search for alternate information,” said Schaffner.

He said take a step back, take a deep breath, and regain trust that has been lost in established sources of information, which over the years, have been reliable.

“Think of all the achievements that have advanced health; both preventive healthcare and diagnostic and therapeutic healthcare treatments, such as heart transplants, artificial hips, or new treatments for cancer, that we’ve all benefited from,” Schaffner said. “Remember these have all been possible because good medical science from researchers and doctors who care for you.”

While patient influencers can connect with others living with the same condition in ways doctors can’t, understanding their affiliation with pharmaceutical companies and consulting with your physician before taking their advice is the best way to stay safe.