The rise of ‘patient influencers’ throws up medical pros and cons

This trend intrigues and concerns Erin Willis, an Associate Professor of Advertising, Public Relations and Media Design at the University of Colorado, Boulder. In a new paper, published in the Journal of Medical Internet Research, she calls on the academic community to take a closer look.

“This is a growing phenomenon, but there is virtually no research on it and very little regulation,” said Willis, who is interviewing dozens of patient influencers for a new study. “Is it going to help patients be better informed? Or is it going to get patients to ask their doctors for drugs they don’t really need? We just don’t know, because no one has studied it.”

In one of the first academic papers to date to explore the phenomenon, Willis and co-author Marjorie Delbaere, a Professor of Marketing at the University of Saskatchewan in Canada, framed patient influencers as “the next frontier in direct-to-consumer (DTC) pharmaceutical marketing.”

DTC pharmaceutical ads have exploded

The controversial form of marketing, legal only in the United States and New Zealand, enables drug companies to target consumers directly, rather than through physicians. Since the first DTC ad ran in the 1980s, the ads have exploded, leading patients to ask their doctors about drugs they see on TV or in print. As Willis notes, about 44% who ask their doctor about a drug, get it.

Today, with trust in pharmaceutical companies, doctors and traditional media all declining, drug makers are now turning to patients themselves as messengers, with companies like WEGO health connecting patient influencers to healthcare companies for paid partnerships.

Having learned from the Kardashian incident, many ad agencies now avoid celebrity influencers altogether and instead engage micro-influencers like individual patients who share their personal stories and endorsements in condition-specific support groups (diabetes, heart disease, etc.) or those with a niche social media following.

“It’s a lot like what we used to see with doctors and pharmaceutical companies,” said Willis. “Only now it is patients using social media to advocate for disease awareness and, in some cases, pharmaceutical medications.”

The US Federal Trade Commission (FTC) now requires that patient influencers disclose whether they are being paid (influencers use #ad or #sponcon to alert followers). And the FDA has published rules about what can and cannot be said on social posts. 

But such rules are open to interpretation and hard to enforce, said Willis. The authors also have concerns that a blurring of the lines between ad and opinion could potentially deceive patients.

“When you see an ad and you recognise it as such, you are aware of the intent and you process it differently,” said Delbaere.

But Willis also sees many upsides to the patient influencer revolution. Patients often know more than their doctors about what it’s like to experience a health condition, and sharing that expertise can potentially help other patients discover treatments they’re unaware of.

And unlike other forms of DTC advertising, social media is interactive. “If an influencer recommends a drug, there is an entire community of voices that get to weigh in on it and support it or share their negative experiences,” noted Willis.