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On TikTok, Instagram and Facebook, patient influencers are remaking the drug advertising market

Research says customers more easily swayed by personal stories of an individual medical odyssey than via traditional forms. Critics worry regulators are too responsive to media-savvy advocates, touting illness-awareness messages, platformed by powerful interests.

Patient influencers utilizing social media to organize around illnesses are changing the way in which drugs are marketed to the public.
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ROCHESTER, Minn. — For those who go online to raise awareness about their favorite causes, there is a certain social capital gained from amassing a large collection of like-minded followers.

For the makers of drugs and medical devices and services, access to so-called “patient influencers” — creators of social media communities linked by their experience with a particular diagnosis or condition — and their followers can be attractive.

The use by patient influencers of Facebook, Twitter, Instagram, YouTube or TikTok is the subject of little research. But their sway over other patients and even regulators is believed to be substantial — some say too substantial.

“This is a growing phenomenon, but there is virtually no research on it and very little regulation,” Erin Willis, associate professor at the University of Colorado Boulder, said in a release that accompanied her recent paper on the subject.

“Is it going to help patients be better informed? Or is it going to get patients to ask their doctors for drugs they don’t really need? We just don’t know, because no one has studied it,” she said.


Others have seen enough.

"It is not a good thing," said Dr. Adriane Fugh-Berman, professor of medicine at Georgetown University, and director of the drug marketing tracking project PharmedOut. "It is a bad thing."

Writing in a 2020 opinion article for the journal Health Affairs, Fugh-Berman and colleague Judy Butler highlighted the financial relationships linking drug manufacturers with the emerging patient-influencer community, connections they believe warp the national conversation about disease and medicine.

"As with doctors who become key opinion leaders," they wrote, "patients who engage with drug companies are doubtless chosen because they offer industry-friendly opinions ... allowing them to drown out opposing views."

Patient-influencers are big business

"Get Paid to Share Your Story," reads the landing page for WEGO Health , a Philadelphia-based patient influencer-focused firm. WEGO describes itself as "a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders."

Using a model that functions by billing customers in the pharmaceutical industry, WEGO offers advice to more than 100,000 patient leaders it has registered as available for the chance to partner with a member of the health care industry.

In addition to making those introductions, WEGO offers patient influencers training on how to write or produce video for followers, policy makers, the public and media. They also advise influencers on what to expect about payments, which are said to be modest.

On the website, WEGO founder Jack Barrette touts these online patient leaders, praising their knowledge, passion, and desire to serve. He calls them "generals of the patient revolution … and the greatest untapped force for change in healthcare."


"Some patient influencers don't work with brands and don't want to work with pharmaceutical brands," Willis said in an interview. "You have others who are eager to work with pharmaceutical brands or who already do so in a patient advisory role."

On its webpage WEGO says it has learned that a third of patient influencers it surveyed were paid more than $500 to speak, while 38% had received no pay, with only travel and expenses covered.

Research shows followers trust what other patients advertise

If so, that would entail a bargain for the health care industry, given research showing that when a patient tells a personal story to an allied audience of followers, such messages are more persuasive than traditional drug advertising forms.

That could cause confusion, says Hyosun Kim, a professor in the Department of Communication at Indiana State University.

"To say for example that 'I have been struggling with type 1 diabetes ... and this medication really helped me to improve my life,'" Kim said, "That lowers one's guard that is known as persuasion knowledge ... People view that promotional content as less promotional."

Kim recently published a paper in the International Journal of Advertising showing the results of her experiments measuring the impact on viewers of a simulated Instagram influencer.

To do so, Kim created a pair of fake Instagram posts promoting a psoriasis drug. One was a simple promotional statement about a drug.

The other was a first-person passage by a made-up influencer — a female fashion expert who detailed how psoriasis had caused her to lose confidence, and that the drug had helped her to go on with her life.


Both posts contained used the hashtag #sponsored, the Federal Trade Commission-required disclaimer that the author had been paid by a drug maker.

Regardless, those who read the personal narrative reported a lessened sense of having been subject to promotional material — and with fewer negative feelings about the message.

"When consumers see a patient influencer's story in a narrative ... they are more likely to empathize with the character's situation," Kim said. "This increases advertising effectiveness."

Her fake postings "exactly modeled the current advertising practices of patient influencer sponsorships," the paper noted, "in that influencers do not present risks and side effects."

Though the FTC recently updated its guidelines requiring influencers to disclose financial relationships with a particular brand or product, Fugh-Berman says patient influencers are more valuable to drug makers when they dodge side effect questions by merely raising awareness about a rare illness.

"When you promote a disease that has one drug attached to it," Fugh-Berman said, "you are promoting the drug as well."

Willis, who studies patient influencers, cites these concerns, but also says "everyone I've interviewed has the intention of helping other patients, because they themselves had such a difficult time navigating their own disease diagnosis and prognosis."

"They may very well be sincere in what they are saying or believe," Fugh-Berman counters. "But they are being selected because what they are saying reflects marketing messages."

Fugh-Berman says it's unclear if the DIY ways of social media campaigns are poised to become the new normal for drug marketing going forward.

"We don't know anything about what pharma is doing with their budgets," she said, "but it seems to me they are using patient influencers much more than physician influencers because patients are so effective with regulators, legislators and the media."

"Bringing patients to the FDA advisory committee meetings to give emotional appeals — we've been to these advisory committee meetings, and it really slays them," she says. "It's the emotional appeal. It sometimes guts scientific consideration of drugs and other products."

Paul John Scott is the health reporter for NewsMD and the Rochester Post Bulletin. He is a novelist and was an award-winning magazine journalist for 15 years prior to joining the FNS in 2019.
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