Biopharma companies have been leveraging patients in their outreach and education for years.
As collaboration between patient influencers and drugmakers has grown, though, there’s been scant published research examining these partnerships. This is especially true as it pertains to the kind of medication-related content being created.
Findings from a study published in this week’s Journal of Medical Internet Research suggest that patient influencers are drawing a line between sharing experiences and advocating for particular therapies. Still, the author called for more investigation into the ethical questions surrounding this emerging form of pharma marketing.
“The bottom line here,” said lead author Erin Willis of the University of Colorado Boulder in summing up her study to Science Daily, “is that patient influencers act as a form of interactive direct-to-consumer (DTC) advertising.”
Indeed, Willis, who is an associate professor of advertising, public relations and media design, has written that she views patient influencers as “the next frontier” of DTC pharma advertising.
As DTC has become more ethically fraught, she noted previously, partnering with social media influencers has become a “covert persuasion tactic” for drugmakers to build relationships directly with savvy patients.
However, just as the drug industry’s growing investment in DTC media has drawn scrutiny, patient influencers on social media have become an area of concern to academic researchers. For her most recent study, Willis sought to explore how patient influencers communicate health literacy on prescription drugs.
What she found, though, based on 26 in-depth interviews conducted with influencers across disease states, was a good deal of well-meaning interaction. All of the interviewees were “conscientious” when it came to promoting medicines. That is, respondents, 69% of whom reported working with for-profit brands and pharma companies, unanimously agreed they would not dole out medical advice but instead advise patients to contact their physician with questions about Rx meds.
When information did address medications, a common refrain she heard was, “What worked for me may not work for you.” Influencers also referred community members to their physicians as experts on prescriptions, Willis reported.
They also agreed that such information should only be shared if the influencer had direct experience with it. When influencers communicated about a particular drug, it was usually related to side effects they experienced or “how it worked for me,” the researcher found.
That said, 19% of the influencers didn’t share any Rx drug information, “simply because they thought it was inappropriate and borderline unethical,” Willis wrote.
In addition, 15% said that they shared pharma company news releases with followers if the information was relevant to the community. Meanwhile, 12% read medical studies and shared the results in laypeople’s terms on their social media platforms. As rationale for disseminating this kind of information, respondents said it wasn’t prompted by sponsorships or payments from a brand or organization but instead stemmed from a desire to appear credible.
Among other key themes that emerged was the “why” behind influencers’ efforts. Most said they share their knowledge and experience in an effort to help others learn about disease self-management and improve their quality of life.
Ninety-two percent said they shared content so others would not suffer from an information or education void. In several cases, Willis reported, participants from communities of color said they wanted culturally appropriate information that was relevant and helpful to “people like me.”
As other scholars have theorized, information conveyed by patient influencers is often over the head of the average consumer. The upshot from her interviews, Willis concluded, was that influencers “can break down complex health information based on expertise and experience and mitigate the loneliness and isolation that other patients may feel without the support of a community.”
But the interviews also raised some red flags. For one, the uniqueness with which respondents said they approach drug information points to the lack of a uniform code of conduct governing these kinds of interactions.
That leaves influencers themselves largely to their own devices, a potentially dicey situation considering past research showing that participants with lower health literacy were more likely to trust social media and celebrities than health information from HCPs. Witness the surge of TikToks and Twitter posts – many by celebrities – touting Novo Nordisk’s Ozempic as an off-label weight loss treatment, leading to global shortages.
Willis also found that nearly a quarter of patient influencers said that in-depth conversations about medications often took place in direct messages. This way, the conversation was kept private, away from the larger community.
Such off-the-grid dialogue increases the chance that an influencer might minimize side-effect information. That concern was underscored by a case a few years ago involving celeb influencer Kim Kardashian, who trumpeted a morning sickness drug, Diclegis, to her tens of millions of Instagram followers without properly disclosing the risks.
The Food and Drug Administration’s Office of Prescription Drug Promotion ordered the post to be taken down and slapped manufacturer Duchesnay USA with a warning letter that flagged the promotion as “false and misleading.”
The author also noted some limitations to the study. All of the interviewees hailed from the same network, Health Union. Willis called for future research on a broader subject pool and the need to define patient influencers and their particular attributes as distinct from the more typical social media influencer. She also urged further study of their compensation and the regulations related to social media marketing of Rx drugs.
The FDA has never released an official regulatory guidebook on social media, and its rules remain open to interpretation. Meantime, the Federal Trade Commission requires influencers to reveal whether they’re paid via hashtags.
All of which serves as a reminder that, although the pharma and medical device industries have been working with them for more than a decade, influencers are still a relatively nascent area of marketing.
But, much like DTC pharmaceutical advertising, which grew from print in the 1980s and broadcast media throughout the early 2000s into a multi-billion-dollar marketing channel, influencers have become a burgeoning industry practice in their own right. In the age of TikTok, social media influencers have become an especially popular strategy to influence younger demographics, including Gen Z and millennials.
As savvy patients continue to enter partnerships with advertisers directly or through agencies, fronting campaigns as brand ambassadors and consulting on the creation of content, this phenomenon bears close watching.