A new study out of the University of Colorado in Boulder indicates that pharmaceutical companies have partnered with so-called "patient influencers" to promote prescription medications on social media.
In the study published this week in the Journal of Medical Internet Research, lead author Erin Willis — an associate professor of advertising, public relations, and media design at CU — interviewed 26 such patient influencers. All participants have struggled with a chronic medical condition — including lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraines, and perimenopause — and all have used "social media platforms regularly to discuss health and collaborate with brands."
According to the study, some of the influencers, though it's unclear how many, had also been paid to promote various medications. And though influencers who have been sponsored by pharmaceutical companies must designate their promotional posts as ads, most of the influencers have a relatively limited following, usually between 1,000 and 40,000 followers, which can make tracking compliance difficult.
Willis also noted that consumers sometimes fail to distinguish between shared personal experiences and paid sponsorships. "Health literacy and digital literacy are both concerningly low in this country," Willis said in the study. "The fact that patients with no medical training are broadly sharing drug information should alarm us."
Though some influencers did receive money for their promotions on social media, Willis and the other authors of the study seemed heartened by the sincere motives expressed by most of the study's participants. Some became involved in medical advocacy because they felt lost when they had first been diagnosed, and they wanted to spare others from a similar experience.
"I spent a lot of time looking for diabetes information that related to me, an African American woman from the South ... and I didn’t find much," said one participant. "So in 2012, I created the website blackdiabeticinfo.com because I wanted to see an African American that had diabetes that was smiling. ... I did not see what I needed, so I created it."
The study also suggested that paying patient influencers might be an inevitable consequence of direct-to-consumer advertising, which costs pharmaceutical companies $6.58 billion in 2020, even though DTC advertising is legal only in the U.S. and New Zealand. About half of all consumers who request a medication after seeing an advertisement for it ultimately receive a prescription for it from their doctor.
As with other DTC advertisements, which became popular in the early 1980s, "the phenomenon of patient influencers raises ethical questions that need more investigation," the study said.
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