Patients-turned-social media influencers routinely provide prescription drug advice to their followers and often have close relationships with pharmaceutical companies, according to new research at the University of Colorado Boulder.
And the study found that they also had good intentions.
The study was published this week in the Journal Journal of Medical Internet Researchoffers some of the first insights into the thriving, unregulated world of so-called “patient altruists,” sharing findings from 26 in-depth interviews about why and how they do it.
“The bottom line here is that patient influencers operate as a form of interactive direct-to-consumer (DTC) advertising, sharing their knowledge and expertise about pharmaceutical drugs with the communities of followers in which they exert significant influence,” said author Erin Willis, associate professor of advertising, public relations and design. Media. This raises ethical questions that need further investigation.”
The study comes amid growing concerns about the harmful consequences of promoting drugs 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 drug to manage their disease have faced a worldwide shortage. Meanwhile, those who took it “off-label” for relief experienced surprising side effects, including violent diarrhea and severe facial thinning.
“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 available only 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 for a drug after watching a TV commercial get it.
With trust in drug companies and traditional media waning, drugmakers are now turning to real patients as reporters, with companies like Health Union linking them up in partnerships.
Willis conducted one-on-one, hour-long Zoom interviews with influencers suffering from a range of conditions, including lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraines, and menopause. Eighteen out of 26 collaborated with a pharmaceutical company in some way.
Most of them had between 1,000 and 40,000 followers. Such “micro-influencers” tend to be less expensive for advertisers to work with than celebrities, Willis said, and research has shown that they have the most influence on buying behavior.
Some of the interviewees posted the company’s press releases directly. Others read studies about drugs and translate the results for followers. Some have been paid to post content for pharmaceutical companies.
“Both health and digital literacy are 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 sharing medication information so widely should be of concern to us.”
Good intentions
On the plus side, Willis encouraged the causes for participants to become influencers.
Almost all of them said they were drawn into their roles by a sense that the answers they sought as patients, were not found in other channels.
One study participant reported, “I spent a lot of time searching for diabetes information related to me – an African American woman from the South.” “I didn’t see what I needed, so I created it.”
Others were motivated by a desire to destigmatize disability in certain societies.
Another participant said, “There is still a lot of talk about Latinos and HIV.” “When there was information, it wasn’t culturally appropriate.”
Five said they never released information about the drug, saying they thought it was “borderline immoral.”
Others said they would only post about medications they were prescribed and took personally and encouraged followers to always consult their doctor. All said they generally sought to act ethically.
“It’s comforting that the people we interview generally want to stay up to date on the science and be a trusted source,” Willis said. “But I also know that doctors go to medical school for a reason.”
The concerns are many
Many influencers report that followers frequently send them private messages for detailed information about dosage and side effects.
“In an online community, there are other people to say, ‘This isn’t true or this isn’t what I experienced,’” Willis said. “But with social media, a lot of the conversation happens especially.”
Willis also worries that influencers may stress the positives of the drugs without fully disclosing the side effects. For example, she pointed to a famously controversial 2015 post by celebrity influencer Kim Kardashian, singing praises of the “morning sickness” drug called Diclegis to her tens of millions of followers on Instagram.
The FDA quickly flagged the post to delete the drug’s long list of risks, ordering Kardashian to remove the post and harm the drugmaker with a warning message. The FTC now requires influencers to disclose whether they are paid via hashtags, such as #ad or #sponcon, and the FDA has rules about what can be said in social posts. But these rules are open to interpretation, and it can be difficult to track down videos, disappearing content, and direct messages.
Willis admitted her sample was small and that because many of her interviewees had been referred to her by the Health Consortium, they likely veered to the responsible side. In future studies, it intends to include broader sample sizes, explore how influencers influence treatment decisions and investigate compensation and regulations regarding patient influencers.
Analysts project that the influencer marketing industry as a whole will be worth $21.1 billion in 2023.
As sick influencers increasingly find their place in it, Willis stresses that regulators must work harder to keep up with all the new platforms.
“It happens, with or without regulation, and people need to be aware of it,” Willis said.
