Patients-turned-social-media-influencers routinely offer prescription drug advice to their followers and often have close ties with pharmaceutical companies, according to new University of Colorado Boulder research.
But they also tend to have good intentions, the study found.
The study, published this week in the Journal of Medical Internet Research, provides some of the first insights into the burgeoning, loosely regulated world of so-called “patient influencers,” sharing findings from 26 in-depth interviews about why and how they do it.
“The bottom line here is that patient influencers act as a form of interactive direct-to-consumer (DTC) advertising, sharing their knowledge and experiences on pharmaceutical drugs with communities of followers in which they wield great influence,” said author Erin Willis, an associate professor of advertising, public relations and media design. “This raises ethical questions that need more investigation.”
The study comes amid growing concerns about the harmful consequences of drug promotion on social media.
In recent weeks, in the wake of a slew of TikTok videos and Twitter posts touting the weight loss benefits of the diabetes drug Ozempic, patients who need the medication to manage their disease have faced global shortages. Meanwhile, those taking it “off-label” to slim down have experienced surprising side-effects, including violent diarrhea and extreme facial thinning.
“This is a great example of the power of social media and the unintended consequences,” said Willis.
A new kind of advertising
Controversial from its start in the 1980s, and still only available in the United States and New Zealand, DTC advertising enables drug companies to target consumers directly, rather than exclusively through physicians. About half of the people who ask their doctor about a drug after seeing a TV ad get it.
With trust in pharmaceutical companies and traditional media declining, drug makers are now turning to real patients as messengers, with companies like Health Union connecting them for partnerships.
Willis conducted one-on-one, hour-long Zoom interviews with influencers with a range of conditions, including lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraines and perimenopause. Eighteen of the 26 collaborated with a pharmaceutical company in some way.
Most had between 1,000 and 40,000 followers. Such “micro influencers” tend to be less expensive for advertisers to work with than celebrities, and research has shown they have the most influence on purchasing behaviors, said Willis.
Some interviewees posted company press releases directly. Others read studies about drugs and translated results for followers. Some were paid to post content for drug companies.
“Health literacy and digital literacy are both concerningly low in this country,” said Willis, noting that consumers often fail to recognize the difference between a sponsored ad and an altruistic personal post. “The fact that patients with no medical training are broadly sharing drug information should alarm us.”…