ROCHESTER, Minn. – For those who go online to raise awareness for their favorite causes, there is a certain amount of social capital gained by amassing a large collection of like-minded followers.
For manufacturers of drugs and medical devices and services, access to so-called “patient influencers” — creators of social media communities connected by their experience with a particular diagnosis or condition — and their followers can be appealing.
The use of Facebook, Twitter, Instagram, YouTube or TikTok by patient influencers is poorly researched. But their influence on other patients and even regulators is seen as substantial – some say too substantial.
“This is a growing phenomenon, but there is virtually no research on it and very little regulation,” Erin Willis, an associate professor at the University of Colorado at Boulder, said in a statement. accompanied his recent article on the subject.
“Will this help patients to be better informed? Or will it lead to patients asking 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.
“That’s not a good thing,” said Dr. Adriane Fugh-Berman, professor of medicine at Georgetown University and director of the PharmedOut drug marketing tracking project. “That’s a bad thing.”
Writing in a 2020 opinion piece for the journal Health Affairs, Fugh-Berman and her colleague Judy Butler pointed to the financial relationships linking drugmakers to the emerging community of patient influencers, relationships they say distort the national conversation on disease and medicine.
“As with physicians who become key opinion leaders,” they wrote, “patients who engage with pharmaceutical companies are undoubtedly chosen because they offer industry-friendly opinions. .which allows them to stifle opposing points of view”.
Patient influencers are big business
“Get Paid to Share Your Story,” reads the homepage of WEGO Health, a Philadelphia-based company focused on influential patients. WEGO describes itself as “a mission-driven company that connects healthcare with the experience, skills and insights of patient leaders.”
Using a model that works by billing pharma clients, WEGO offers counseling to the more than 100,000 patient leaders it has registered as available for the chance to partner with a member of the healthcare industry. Health care.
In addition to making these presentations, WEGO provides influencer patients with training on how to write or produce videos for followers, decision makers, the public and the media. They also advise influencers on what to expect regarding payouts, which are said to be modest.
On the website, WEGO founder Jack Barrette touts these patient leaders online, praising their knowledge, passion and desire to serve. He calls them “the 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 are already doing so in a patient advisory role.”
On its webpage, WEGO says it learned that a third of patient influencers surveyed were paid more than $500 to speak, while 38% received no compensation, with only travel and expenses covered.
Research shows that subscribers trust what other patients advertise
If so, this would imply a boon for the healthcare industry, given research showing that when a patient tells a personal story to an allied audience of followers, such messages are more persuasive than forms. traditional drug advertising.
That could be confusing, says Hyosun Kim, a professor in the Department of Communication at Indiana State University.
“To say like, ‘I’ve battled type 1 diabetes…and this drug has really helped me improve my life,'” Kim said, “It lets your guard down, what’s called knowing the persuasion … People see that promotional content is less promotional. »
Kim recently published an article 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 stint from a makeup influencer – an expert in women’s fashion who explained how psoriasis had made her lose confidence and how the drug had helped her get on with her life.
Both posts used the hashtag #sponsored, the disclaimer required by the Federal Trade Commission indicating that the author was paid by a drugmaker.
Regardless, those who read the personal account said they felt less like they had been subjected to promotional material – and fewer negative feelings about the message.
“When consumers see a patient influencer’s story in a story … they’re more likely to relate to the character’s situation,” Kim said. “It increases the effectiveness of advertising.”
His fake posts “exactly model current patient influencer sponsorship advertising practices,” the paper notes, “in that influencers do not pose risks and side effects.”
Although 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 drugmakers when they avoid questions about side effects by simply raising awareness of a rare disease.
“When you promote a disease that has a drug associated with it,” Fugh-Berman said, “you are also promoting the drug.”
Willis, who studies influential patients, cites these concerns, but also says that “everyone I interviewed intended to help other patients, as they themselves had great difficulty navigating their own diagnosis and prognosis of the disease”.
“They may very well be sincere in what they say or believe,” Fugh-Berman counters. “But they are selected because what they say reflects marketing messages.”
Fugh-Berman says it’s unclear whether DIY methods of social media campaigns are about to become the new normal for drug marketing in the future.
“We don’t know anything about what pharma is doing with their budgets,” she said, “but it seems to me that they use patient influencers a lot more than physician influencers because patients are so effective with regulators, legislators and the media.”
“Bringing patients to FDA advisory board meetings to make emotional appeals — we’ve been to those advisory board meetings, and it really kills them,” she says. “It’s the emotional appeal. It sometimes shakes the scientific scrutiny of drugs and other products.”