Truth, Inspiration, Hope.

Social Media Patient Influencers Are Being Influenced by Big Pharma

"Participants with lower health literacy were less likely to trust health information from health care professionals but more likely to trust social media and celebrities," University of Colorado Boulder researchers stated.
Neil Campbell
Neil lives in Canada and writes about society and politics.
Published: April 5, 2023
Patient influencers on social media are being targeted by Big Pharma to push messages to consumers with less health literacy.
A file photo of an Oxford University student promoting COVID-19 testing as a TikTok influencer in December of 2020. Patients of illnesses such as HIV and diabetes who have, wittingly or unwittingly, become social media influencers are being influenced by Big Pharma as declining rates of health literacy leave many trusting online personalities more than doctors. (Image: Laurel Chor/Getty Images)

“In a way, patient influencers are interactive health education agents who may also share prescription medication information,” states a recent University of Colorado Boulder study interviewing more than two dozen patient-turned-social media influencers recruited from a public relations firm specializing in the subject.

The study, published March 13, explains, “Long have patients been active in online health communities and social media platforms such as Twitter and Instagram, but in recent years, pharmaceutical marketers have noticed the power of patient persuasion and begun to leverage ‘patient influencers’ in brand campaigns.”

Researchers relied on a firm called Health Union, which states on its website that it was co-founded by two former GlaxoSmithKline employees, one an Executive Director and the other a Marketing Director, describing itself as an entity that manages “a growing portfolio of condition-specific online health communities, and over 100,000 patient leaders.”


Health Union was asked to “help identify a sample of patient influencers” and subsequently “provided a curated list of patient influencers to interview,” according to the study, which stated selection criteria was that the influencers were over 18, had been diagnosed with either a disease or a health condition, and are “using social media platforms regularly to discuss health and collaborate with brands.”

After an email-based invite to participate in the study—composed of a 72 minute interview paying $50—respondents were also asked to refer fellow influencers so as to obtain more participation.

In total, 26 influencers participated in the study, 18 females and 8 males composed of 17 Whites, 4 Hispanics, 4 African-Americans, and 1 Asian-American with disorders ranging from lupus and diabetes to asthma, HIV, and epilepsy.

Interviewees were asked a number of questions, ranging from their motivations for starting their accounts and how they became patient influencers, to probes as to whether they understood the advantages and disadvantages of social media as a platform and how their actions affect their followers.

Results were segmented into a Word document containing anonymized and fragmented quotes. 

One typical example was that of an African-American woman located in the South diagnosed with diabetes who stated her motivation was that she “spent a lot of time looking for diabetes information that related to me” and had started her own website themed around her race and illness because she “wanted to see an African American that had diabetes that was smiling.”

Another interviewee of an undefined gender, race, and disorder said they had started a blog when they were in the hospital because they were lacking the “emotional bandwidth” to communicate to friends and family about what had happened.

They summarized the feedback received as, “From here, they were like if this could happen to you…who works out…the tofu-eating one, this could happen to any of us!”

Researchers explain that this form of influencer marketing has become a burgeoning multi-billion dollar industry.

A July of 2021 article by Insider Intelligence cited in the study states that “influencer marketing spending” was already a $3 billion segment projected to expand to a $4 billion industry by 2022.

A representative of the company attributed the growth to something of a side effect of the Coronavirus Disease 2019 (COVID-19) pandemic and how the onslaught of messaging and social campaigns changed behaviors and the human way of life.

“But as the pandemic also accelerated many new creator-driven social trends, including short video and social commerce, marketers quickly resumed and are now increasing their spending on influencer marketing, as they realize that influencers are their ticket to reach those audiences,” they stated.

University of Colorado Boulder authors argued that this factor combined with the pharmaceutical industry’s direct-to-consumer (DTC) advertising technique, which they cited as already fostering a $6.58 billion industry in 2020.

DTC advertising, they said, has the shortcoming of employing messages that “often places heavy emphasis on emotional appeal without providing more comprehensive health information.”

However, because studies have shown that as many as half of patients lack the literacy skills required to even “follow instructions related to their medications” and that as many as one-third of Americans are without even basic “health literacy” abilities, DTC has become a prominent method, the study says.

“Research shows that those with lower health literacy often turn to television, social media, blogs, and celebrities for health information,” the authors wrote, adding that, “Participants with lower health literacy were less likely to trust health information from health care professionals but more likely to trust social media and celebrities.”

The interview found that the influencers “tend to have good intentions,” according to a press release accompanying the study published on the website Medical Express.

For example, the study found a minority shared “news releases from pharmaceutical companies” only if “the information was relevant to the community,” while a secondary minority of respondents “read medical studies and shared the results in laypeople’s terms on their social media platforms.”

Authors were careful to note that, “Sharing this type of information was not prompted by sponsorships or payments from a brand or organization. Instead, the patient influencers wanted to be credible to their followers, which meant staying informed on the latest science in the field.”

”All the patient influencers interviewed (26/26, 100%) were empathetic and expressed compassion for other patients in their community. As the patient influencers felt like ‘expert patients,’ they wanted to mentor and advocate for others,” the authors wrote.

All 26 respondents were also resolute that “they would not give medical advice but instead prompt the patient to contact their physician with questions about prescription medications.”

Nonetheless, 18 of the 26 respondents “reported working with for-profit brands and pharmaceutical companies.”

Notably, 20 of the 26 reported themselves as personal users of prescription medications, with 19 of the 26 stating they “would only discuss medications they had experience with.”

Only 5 of the 26 said they “did not share any prescription drug information simply because they thought it was inappropriate and borderline unethical.”

But despite the upright aspirations proclaimed, authors again underscored that, “One of the inclusion criteria for this study was that the patient influencers collaborate with brands.”

However, the study said that collaboration could also include behavior such as “serving on advisory boards, speaking to physicians and researchers, or communicating with key audiences.”

The authors ultimately concluded that, “Patient influencers help facilitate self-efficacy for other patients to talk to their physicians and seek a high quality of life,” while also playing the positive role of being able to “potentially bridge a gap in the health care system and offer information and advice in laypeople’s terms or in a way that is culturally relevant.”

But the study warned that for Big Pharma, influencers remain a “lucrative marketing investment” who have become the focus of “social media strategies to target and connect directly with patients, shape consumers’ brand perceptions, and build relationships with younger audiences in niche market segments.”