Social Media Discussions on Medication Give Rise to “Patient Influencers”

Patients are increasingly exchanging information about prescription medications on social media, according to a study published in the Journal of Medical Internet Research.

To better understand the new phenomenon of “patient influencers”, the study authors conducted 26 interviews with individuals who routinely share advice on health topics related to their conditions. These included lupus, fibromyalgia, Parkinson disease, asthma, HIV, celiac disease, chronic migraines, and perimenopause.

To guide their analysis, the authors used the Health Belief Model, a framework for predicting health-related behavior. Through these interviews, they identified 3 common themes: an understanding of the disease state through experience, a desire to stay informed about the health topic, and the importance of physician expertise.

“The bottom line here 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,” said author Erin Willis, an associate professor of advertising, public relations and media design. “This raises ethical questions that need more investigation.”

An example of this type of influence includes the recent popularity of the diabetes drug Ozempic, which has been touted for its weight loss benefits on platforms such as TikTok and Twitter. The social media storm had resulted in a shortage of the drug due to increased demand for its off-label use.

While the authors noted several concerns related to this type of communication, through their interviews, they did find a positive side. Based on their own experiences, patient influencers were able to provide a supportive community to others who may be experiencing similar circumstances.  

“It’s comforting that the people we interviewed generally want to stay abreast of the science and be a credible source,” said Willis. “But I also know that doctors go to medical school for a reason.”


  1. Willis E, Friedel K, Heisten M, et al. Communicating health literacy on prescription medications on social media: In-depth interviews with “patient influencers”. Published online March 13, 2023. Journal of Medical Internet Research. doi:10.2196/41867
  2. Study sheds light on concerning new trend in drug advertising: Patient influencers. News release. March 13, 2023.

This article originally appeared on MPR