How ‘patient influencers’ mislead patients on prescription drugs

By our News Team | 2023

Some influencers, themselves sufferers of an ailment, give well-intentioned advice. Others are paid to do so. The consequences are concerning.

Patients who have become social media influencers routinely offer prescription-drug advice to their followers and often have close ties with pharmaceutical companies, according to new research from the University of Colorado Boulder in the US. But they also tend to have good intentions, the study found.

Published last week in the Journal of Medical Internet Research, the research provides some of the first insights into the burgeoning, loosely regulated world of so-called ‘patient influencers’.


Photo by Shvets from Pexels

“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.

Dr Kin Kariisa

Group CEO - Next Media

Dr. Kin Kariisa is an extraordinary force at the helm of Next Media Services, a conglomerate encompassing NBS TV, Nile Post, Sanyuka TV, Next Radio, Salam TV, Next Communication, Next Productions, and an array of other influential enterprises. His dynamic role as Chief Executive Officer exemplifies his unwavering commitment to shaping media, business, and community landscapes.
With an esteemed academic journey, Dr. Kariisa’s accolades include an Honorary PhD in exemplary community service from the United Graduate College inTexas, an MBA from United States International University in Nairobi, Kenya, a Master’s degree in Computer Engineering from Huazong University in China, and a Bachelor’s degree in Statistics from Makerere University.
Dr. Kariisa pursued PhD research in Computer Security and Identity Management at Security of Systems Group, Radboud University in Nijmegen, Netherlands. As a dynamic educator, he has shared his expertise as a lecturer of e-Government and Information Security at both Makerere University and Radboud University.

Dr Kin did his PhD research in Computer Security and Identity Management at Security of Systems Group, Radbond University in Nigmegen, Netherlands. He previously served as a lecturer of e-Government and Information Security at Makerere University in Kampala, Uganda and Radbond University in Netherlands.

Dr Kin did his postgraduate courses in Strategic Business Management, Strategic Leadership Communication and Strategies for Leading Successful Change Initiatives at Harvard University, Boston USA.

  • Other current and previous roles played by Dr Kin Kariisa:
  • Lecturer of e-Government and Information Security to graduate students at Makerere University, Kampala and Radbond University in the Netherlands
  • Director of Eco Bank Uganda Limited, one of the largest banks in Africa
  • Chairman of the National Association of Broadcasters, an umbrella industry association for all Television, Radio and online broadcasters in Uganda.
  • Chairman of Board of Directors of Nile Hotel International, that owns the leading hotel in Uganda, Kampala Serena Hotel.
  • Chairman of Board of Directors of Soliton Telmec Uganda, the leading telecom company in Optic fibre business managing over 80% of optic fibre in Uganda.