“Patient influencers”, the new frontier of management


“OH MY GOD. Have you guys heard of this?”

So began a 2015 post by then-pregnant celebrity influencer Kim Kardashian, singing the praises of a “#morningsickness” drug called Diclegis to her tens of millions of Instagram followers.

“This has been studied and there is no increased risk to the baby,” she wrote, alongside a smiling selfie of her holding the pill bottle. “I’m so excited and happy with the results.”

The Food and Drug Administration quickly flagged the post for omitting risks, asked Kardashian to remove the post, and hit the drugmaker with a warning letter.

But seven years later, so-called patient influencers are alive and well, with pharmaceutical companies increasingly partnering with real patients who share their personal stories and advocate for brands online.

This trend intrigues and concerns Erin Willis, associate professor of advertising, public relations and media design at CU Boulder. In a new article published in the Journal of Internet Medical Researchit calls on the academic community to take a closer interest in it.

“It’s a growing phenomenon, but there’s virtually no research on it and very little regulation,” said Willis, who interviews dozens of influential patients for a new study. “Will this help patients to be better informed? Or will it lead to patients asking their doctors for drugs they don’t really need? We just don’t know, because no one has studied it.

New twist on “direct to consumer” marketing

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, cast influential patients as “the next frontier in direct selling. to consumers (DTC) pharmaceutical”. marketing.”

The controversial form of marketing, legal only in the United States and New Zealand, allows drug companies to target consumers directly, rather than through doctors. Since the first DTP commercial aired in the 1980s, 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, as trust in pharmaceutical companies, doctors and mainstream media is on the decline, drugmakers are now turning to patients themselves as messengers, with companies like WEGO health connecting patients influencers to healthcare companies for paid partnerships.

Having learned from the Kardashian incident, many advertising agencies are now avoiding influential celebrities altogether and instead hiring “micro-influencers” like individual patients who share their personal stories and recommendations in community-specific support groups. a condition (diabetes, heart disease, etc.) or those with a niche following on social media.

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

A blurring of the boundaries between advertising and opinion

The Federal Trade Commission (FTC) now requires patient influencers to disclose whether they are paid (influencers use #ad or #sponcon to alert followers). And the FDA has issued rules about what can and cannot be said on social posts. But such rules are subject to interpretation and difficult to enforce, Willis said.

The authors also fear that a “blurring of the lines” between advertising and opinion could potentially mislead patients.

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

As with any social media influencer, a patient influencer may omit crucial information, such as the availability of a cheaper generic option, or unintentionally spread misinformation due to a lack of scientific expertise. But when health issues or drugs are the subject of messaging, the stakes can be higher than with shoes or makeup, Willis said.

Benefits for patients and advertisers

That said, she also sees many benefits in the patient influencer revolution. Patients often know more than their doctors about what it’s like to experience a medical condition, and sharing that expertise can potentially help other patients discover treatments they don’t know about.

And unlike other forms of DTC advertising, social media is interactive.

“If an influencer recommends a drug, there’s a whole community of voices that can weigh in and support it or share their negative experiences,” Willis said.

So far, in her interviews with influential patients, Willis said she’s found that only a small number of them get paid to publish (some get free trips to conferences or get paid to sit to advisory boards). Some are not paid at all.

“They’re all saying they’re really doing this so other patients have information and can have a better life,” Willis said. “It’s their No. 1 motivation and I think it’s great.”

She said she hopes her work, funded in part by the Arthur W. Page Center for Integrity in Public Communication, and the new research program she has started, will lead to a set of best practices for influential patients. and the companies they work with. with.

“There is both value and risk in this growing trend and like everything, it has the potential to become dangerous if we are not careful,” Willis said.


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