By: Dennis Thompson
Disability activist Gem Hubbard regularly shares her insights about life in a wheelchair with more than 75,000 Instagram followers, under the handle @wheelsnoheels_, and her YouTube videos boast more than 3.7 million hits.
Hubbard, who hails from the U.K., is “increasingly known internationally for her work in furthering the horizons of people with and without disabilities,” her website says.
It goes on to say that Hubbard also “works hard to bring brands to life,” promoting Grippoz silicone covers for wheelchair rims, wheelchair bags from Pickepacke, and the ADAPTS Disabled Passenger Transfer Sling.
“With a niche following of ninety thousand, she is sure to bring awareness to your brand with a high standard,” Hubbard’s website says. “Gem views all products and services as potentially life-enhancing for wheelchair users and all of her followers and contacts.”
Patient influencers like Hubbard fill social media these days, and a new report says pharmaceutical companies and medical device manufacturers view them as an increasingly popular direct-to-consumer marketing tool.
These patient influencers share their stories in online health forums and on social media, using their personal experiences to help inform and educate others.
Because they openly discuss sensitive and personal health problems — which run the gamut from chronic pain to cancer to psoriasis to multiple sclerosis — patient influencers come across as more sincere and potentially hold much more sway over their followers than social media influencers hawking handbags, shoes or energy drinks, the report said.
But relationships that some influencers have established with drug companies and medical firms raise ethical questions that need to be considered, said report co-author Erin Willis, an associate professor of advertising, public relations and media design at the University of Colorado Boulder who is conducting research into patient influencers.
At this point there’s virtually no research into the patient influencer phenomenon, and very little regulation, Willis said in the report, recently published in the Journal of Medical Internet Research.
“I don’t want to come out of the gate really hot and say that this is an unethical practice because we don’t know yet what it is,” Willis said. “It could be good, right? Patients sharing information could be a positive thing. But then also, of course, there could be some risks involved.”
This situation makes it difficult for people seeking information about their medical conditions to know whom to trust, since popular influencers might be compensated on the side by companies with an interest in the messages they’re promoting, said Dr. Adriane Fugh-Berman, a professor of pharmacology and physiology at Georgetown University Medical Center in Washington, D.C.
“Patient stories and patient perspective can be important, but the perspectives that are being highlighted are the ones that back marketing goals,” she said. “They might just be out there telling their story, but they are being selected because what they’re saying supports marketing goals.”
Patients now part of marketing to the consumer
Patient influencers are far from a new phenomenon
“Pharma has been using patient advocacy groups for many years and individual influencers at this point also for years,” Fugh-Berman said. “This isn’t like some possibility in the future.”
Direct-to-consumer (DTC) marketing, which enables drug companies to target consumers directly, tends to be controversial and is legal only in the United States and New Zealand, Willis noted.
DTC ads fill TV and print, prompting patients to ask their doctors about specific drugs. It’s an effective marketing tool — about 44% of patients who ask their doctor about a drug receive a prescription for it, Willis said.
But as trust in pharmaceutical companies, doctors and traditional media has declined, drugmakers now are turning to patients themselves as messengers, the new report said.
Patient influencers first drew the attention of federal regulators in 2015, when celebrity influencer Kim Kardashian sang the praises of a “#morningsickness” drug to tens of millions of Instagram followers, according to Willis’ report.
The U.S. Food and Drug Administration swiftly flagged the post for omitting the medication’s risks and sent the drugmaker a warning letter. Kardashian, who was paid by the drug company, had to remove the post.
Kim isn’t the only Kardashian to run afoul of the FDA. Her sister Khloe received her own warning letter from the agency this week, based on an appearance on “The View” talk show last July where she touted a migraine drug as a “game changer.”
In a letter sent Tuesday, the FDA told the manufacturer, Biohaven Pharmaceuticals, that Khloe Kardashian’s appearance made “false or misleading claims and representations about the risks associated with and the efficacy of” the migraine medication.
Experts are concerned because even patient influencers without the cachet of a Kardashian can hold powerful sway over their followers, because they’re viewed as more sincere and less self-promotional.
“These patient influencers are simply sharing their lives. It just happens that their lives include health information and pharmaceutical drugs,” Willis said. “Whereas a pop culture influencer, they’re curating content in a different way because they’re trying to actively gain those sponsorships or work with brands. That’s not quite the case with these patients. The motives are very different. They want to help other patients live better lives.”
Patient influencers tend to carry a lot more weight with followers than social media influencers who focus on lifestyle, according to WEGO Health, a marketing firm that recruits patient leaders and influencers to work with pharmaceutical companies.
About 51% of social media users mostly or completely trust information shared by patient influencers, versus just 14% for lifestyle influencers, according to survey results cited by WEGO Health in a 2020 report, “Pharma Influencer Marketing: Making the Case.”
That survey also found that 64% of people were mostly or very likely to research or ask their doctors about health information communicated or promoted by another patient suffering from their same ailment.
“Overall, the takeaways from our landscape research indicate that patients as influencers for brands will help build trust more so than lifestyle influencers, are more likely to increase target patient audience action, and that patients are receptive to branded marketing and ready to partner with pharma to make it happen,” the WEGO Health report concluded.
