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# Regulators Need to Keep Up with ‘Patient Influencers’: Study
- URL: https://www.fdaweb.com/regulators-need-to-keep-up-with-patient-influencers-study/
- Published: 2023-03-22T12:00:00.000Z
- Updated: 2026-09-14T18:21:19.000Z
- Author: David McFarland
- Tags: FDA Policy/General, #legacy-id-D5154046

New University of Colorado Boulder research indicates a need for regulators like FDA and the Federal Trade Commission (FTC) to do more to keep up with social media patient influencers. The [research](https://www.colorado.edu/today/2023/03/13/how-patient-influencers-may-be-misleading-patients-prescription-drugs?ref=fdaweb.com) was based on in-depth interviews with 26 so-called “micro-influencers,” who generally have between 1,000 and 40,000 followers.

Associate professor of advertising, public relations, and media design **Erin Willis**, the study author, says, “the bottom line is that patient influencers act as a form of interactive direct-to-consumer 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.”

The influencers who were interviewed for the study had a range of conditions including lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraines, and perimenopause. Some 18 of the 26 collaborated with a pharmaceutical company in some way.

Willis says that micro-influencers tend to be less expensive for advertisers to work with than celebrities, and research has shown that they have the most influence on purchasing behaviors.

Some of the influencers posted company press releases directly, Willis says, while others read studies about drugs and translated the results for their followers. Some were paid to post content for drug companies.

“Health literacy and digital literacy are both concerningly low in this country,” Willis says, noting that consumers often fail to recognize the difference between a sponsored ad and an altruistic personal post. “The fact that patients with no medical training are broadly sharing drug information should alarm us,” she concludes.

Willis says the Federal Trade Commission now requires influencers to disclose whether they are paid via hashtags. And FDA has rules on what can be said on social posts. “But those rules are open to interpretation, and videos, disappearing content, and direct messaging can be hard to track,” the study says. “This is happening with or without regulation and people should be aware of it.”