How ‘patient influencers’ mislead patients on prescription drugs

“The bottom line here is that patient influencers act as a form of interactive direct-to-consumer (DTC) advertising, sharing their knowledge and experiences on pharmaceutical drugs with communities of followers in which they wield great influence. This raises ethical questions that need more investigation,” said author Erin Willis, an Associate Professor of advertising, public relations and media design.

The study comes amid growing international concerns about the harmful consequences of drug promotion 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 medication to manage their disease have faced global shortages. 

Meanwhile, those taking it ‘off-label’ (in an unapproved way) to slim down have experienced surprising side-effects, including violent diarrhoea and extreme facial thinning.

“This is a great example of the power of social media and the unintended consequences,” emphasised Willis.

Direct-to-consumer strategy only allowed in two countries

Controversial from its start in the 1980s, and still only available 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 about a drug after seeing a TV ad get it.

Willis conducted interviews with influencers with a range of conditions – including lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraines and perimenopause. Eighteen of the 26 collaborated with a pharmaceutical company in some way.

Most had between 1,000 and 40,000 followers. Such micro-influencers tend to be less expensive for advertisers to work with than celebrities, and research has shown they have the most influence on purchasing behaviours, explained Willis.

Some interviewees posted company press releases directly. Others read studies about drugs and translated results for followers. Some were paid to post content for drug companies.

According to Willis, consumers often fail to recognise the difference between a sponsored advertisement and an altruistic personal post. “The fact that patients with no medical training are broadly sharing drug information should alarm us,” she emphasised.

Several influencers reported that followers frequently private message them to get detailed information about dosage and side effects.

“In an online community, there are other people there to say, ‘That’s not true or that’s not what I experienced’.” Willis said. “But with social media, a lot of the conversation happens privately.”

You can find out more about the study ‘Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With Patient Influencers’ here.