Patients who become social media influencers routinely offer prescription drug advice to their followers and often have close ties to pharmaceutical companies, according to new research from the University of Colorado Boulder.
But they also tend to have good intentions, the study found.
The study, published this week in Journal of Medical Internet Researchprovides some of the first insights into the growing, 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 about pharmaceutical drugs with communities of followers in which they are highly influential,” said author Erin Willis. . associate professor of advertising, public relations and media design. “This raises ethical questions that need further investigation.”
The study comes amid growing concerns about the harmful effects of drug promotion on social media.
In recent weeks, following a series of TikTok videos and Twitter posts touting the weight-loss benefits of the diabetes drug Ozempic, patients who need the drug to manage their disease have faced global shortages. Meanwhile, those taking it “off-label” to lose weight have experienced surprising side effects, including violent diarrhea and extreme thinning of the face.
“This is a great example of the power of social media and unintended consequences,” Willis said.
A new kind of advertising
Controversial since its inception in the 1980s and still only available in the United States and New Zealand, DTC advertising allows pharmaceutical companies to target consumers directly rather than solely through physicians. About half of people who ask their doctor about a drug after seeing a TV ad take it.
With trust in drug companies and traditional media waning, drugmakers are now turning to real patients as messengers, with companies like Health Union connecting them for partnerships.
Willis conducted hour-long one-on-one 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 worked with a pharmaceutical company.
Most had between 1,000 and 40,000 followers. Such “micro influencers” tend to be less expensive for advertisers to work with celebrities, and research has shown they have the most influence on buying behaviors, Willis said.
Some interviewees published company press releases directly. Others read drug studies and translated results for fans. Some were paid to post content about pharmaceutical companies.
“Health literacy and digital literacy are both alarmingly low in this country,” Willis said, noting that consumers often fail to recognize the difference between a sponsored ad and an altruistic personal post. “The fact that patients without medical training are widely sharing drug information should be of concern to us.”
On the bright side, Willis encouraged the reasons participants become influencers.
Almost all said they were drawn from their roles by a sense that the answers they sought as patients were not available in other channels.
“I spent a lot of time looking for information about diabetes related to me — an African-American woman from the South,” said one study participant. “I didn’t see what I needed, so I created it.”
Others were motivated by a desire to de-stigmatize disability in certain communities.
“Latinos and HIV are still not being talked about much,” said another participant. “When there was information, it was not culturally appropriate.”
Five said they never share drug information, stating that they thought it was “borderline unethical.”
Others said they would only post about drugs that were prescribed and taken personally and always encouraged followers to consult their doctor. All said they generally tried to behave ethically.
“It’s comforting that the people we interviewed generally want to stay informed about the science and be a reliable source,” Willis said. “But I also know that doctors go to medical school for a reason.”
Several influencers reported that followers often private message them to get detailed information about dosage and side effects.
“In an online community, there are other people out there who say, ‘That’s not true or that’s not what I experienced,'” Willis said. “But with social media, a lot of conversations happen in private.”
Willis also worries that influencers may emphasize the positives of drugs without fully disclosing the side effects. For example, he refers to a famously controversial 2015 post by celebrity influencer Kim Kardashian singing the praises of a “#morningsickness” drug called Diclegis to her tens of millions of Instagram followers.
The Food and Drug Administration immediately flagged the post for omitting the drug’s long list of risks, asked Kardashian to remove the post, and hit the drug maker with a warning letter. The Federal Trade Commission (FTC) now requires influencers to disclose whether they are being paid via hashtags, such as #ad or #sponcon, and the Food and Drug Administration has rules about what can be said in social media posts. However, these rules are open to interpretation, and videos, disappearing content, and instant messages can be difficult to track.
Willis acknowledged that her sample was small and that because many of the interviewees were referred to her by the Health Union, they are likely skewed toward the responsible side. In future studies, she plans to include larger sample sizes, explore how influencers influence treatment decisions, and explore reimbursement and regulations around those that affect patients.
Analysts predict that the influencer marketing industry as a whole will be valued at $21.1 billion by 2023.
As patient influencers increasingly find their way into it, Willis argues that regulators need to work harder to keep up with all the new platforms.
“This is happening, with or without regulation, and people should be aware of it,” Willis said.