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.
Gray areas in what influencers can say and do
Influencers who work with WEGO Health are provided training so that they'll know the FDA and U.S. Federal Trade Commission rules with which they need to comply, said Amrita Bhowmick, chief community officer for Health Union, owner of WEGO Health.
Under FTC rules, patient influencers who are paid to tout specific products must note their compensation in posts about those products. If they're writing about a medical conference they attended, they should disclose the fact that a pharmaceutical company paid for their trip, Bhowmick said.
"We veer on the side of being extremely cautious because without credibility, our entire business falls apart, right?" she said. "We are very aggressive about marking things as sponsored. For instance, we'll use #ad -- no stealth language. It's very explicit."
Influencers also are warned against offering medical advice, and urged to keep track of what's being said in the comments section of their posts.
"We keep an eye on the momentum of posts," Bhowmick said. "If it ever feels like something is gaining traction and is going to the point where the patient leader or our moderators can't keep an eye on all the comments, you need to shut it down. You can't just let it spiral in a way where you can't monitor the comments responsibly."
The pharmaceutical industry group PhRMA has set forth a "robust set of principles for direct-to-consumer marketing" to which its members have voluntarily agreed, spokeswoman Sarah Sutton said.
"Direct-to-consumer communications can provide important opportunities to help patients have informed discussions about their health with their physicians, as well as further public awareness of disease and available treatment options," Sutton said. "The biopharmaceutical industry takes seriously its responsibility to following all applicable legal requirements surrounding direct-to-consumer communications, including FDA regulations that help ensure communications are accurate and backed by appropriate evidence."
But Bhowmick acknowledges that this new field of social media influence continues to have gray areas and blurred lines, and that other marketing companies might not be as conservative as hers in following a set of standards.
In fact, WEGO Health is assisting Willis with her research, helping her connect with patient influencers for in-depth interviews.
"I think having people like Dr. Willis creating more precise guidelines around what's considered best practice can really only up the game in this space," Bhowmick said.
Willis thinks patient influencers can serve a valuable purpose, helping to disseminate information about health problems among people who may not have easy access to a doctor.
"I think patients go to the internet because they trust other patients," she said. "And so I almost wonder if maybe these patient influencers are good, and could be useful in health promotion or health education."
But it can be very easy for freewheeling influencers to cross the line, particularly if they are average Joes and Jills primarily motivated by the need to help others, experts said.
"When patients start answering other patients' questions about medications or advising them, that's questionable," Willis said. "When patients share information, you don't know their health literacy."
While it's known to be happening, how it's happening or what it looks like isn't known, she said.
"What kinds of information are being shared? Does it have any effect on patients asking for a certain prescription?" Willis said. "We need to know that."
Texts, direct messages raise ethical concerns
The situation gets even murkier when you consider that patient influencers sometimes chat with followers in ways that aren't public, through direct messages or on closed social media forums where a person needs to ask permission to join the conversation, Willis said.
"Some of those conversations might happen under the radar, in direct messages or on posts that disappear in 24 hours. That's where questions are being raised," she said.
"It shares some of the same ethical concerns of traditional direct-to-consumer marketing, except that this is kind of like an interactive form of direct-to-consumer marketing," Willis added.
Fugh-Berman's concerns extend beyond the social influence patient influencers have on individuals.
"Patients who are involved with pharmaceutical companies are testifying to the Food and Drug Administration," Fugh-Berman said. "They are affecting drug approval. They are affecting legislation. They're affecting public opinion in a way that benefits pharmaceutical companies and medical device manufacturers, and they may not even know that what they're doing has that effect."
In recent years, the FDA has regularly buckled under public pressure to approve controversial drugs, Fugh-Berman said -- Addyi for female sexual dysfunction, Aduhelm for Alzheimer's disease, Exondys 51 for Duchenne muscular dystrophy -- and it's not clear how much of that pressure has been bought by pharmaceutical companies.
"We want objective people evaluating new drugs and new devices, who are actually looking at the science and determining whether the risks outweigh the benefits," Fugh-Berman said. "These are not decisions that should be made on emotional appeals, but the emotional appeals work really well."
Further, patients who testify before the FDA or Congress don't have to disclose that their way has been paid by a pharmaceutical company, Fugh-Berman said.
"The FDA asks, but does not require them to disclose conflicts," she said. "So what they generally say is 'I have no financial interest in the outcome of this meeting.'"
Fugh-Berman thinks patient influencers should be required to publicly identify companies that are paying them, the names of products being endorsed, and how much they're being paid to hawk the products.
"Patient relationships with industry, their intermediaries, or their vendors should be disclosed publicly as well as privately," she said in written comments on the subject. "This is particularly important with media and in testimony, comments on regulations, communications with policymakers or the public, and any other efforts to influence public policy. It is only when commercial relationships are disclosed that others can come to their own conclusions about conflicts of interest."
The U.S. Federal Trade Commission has more about the disclosure rules for social influencers, while PhRMA has a set of guiding principles for direct-to-consumer advertising.
SOURCES: Erin Willis, PhD, MPH, associate professor, advertising, public relations and media design, University of Colorado Boulder; Adriane Fugh-Berman, MD, professor, pharmacology and physiology, Georgetown University Medical Center, Washington, D.C.; Amrita Bhowmick, MPH, MBA, chief community officer, Health Union LLC, Philadelphia; Sarah Sutton, director, public affairs, PhRMA, Washington, D.C.; Journal of Medical Internet Research, March 1, 2022