The Influencers

By Chuck Dinerstein, MD, MBA — Apr 04, 2023
Social media influencers (SMI) are a growing advertising market, returning nearly six dollars for every dollar invested – a return on investment of 5.78. These SMI are the next step in direct-to-consumer (DTC) marketing. A new study looks at the patient influencers in healthcare.
Image by expresswriters from Pixabay

Sixty percent of Americans have at least one chronic illness, and 40% of us have two or more. Unlike an acute illness, chronic disease requires patient self-care; you must help yourself, at least between doctor visits. This creates a large marketplace for self-care instruction, and with such a high return on investment, social media influencers are ubiquitous, sharing content and growing an audience. We are all familiar with celebrity influencers, but in healthcare, the influencers are more often patients sharing their experience with a chronic disease. Health Union, a company pairing patient influencers with “health care opportunities,” defines patient influencers as

“the most visible and trusted health consumers. They raise awareness, share information and support their communities.”

Those communities vary in size. If measuring by followers, patient influencers may be nano-influencers (<1000 followers), micro-influencers with up to 40,000 followers, macro-influencers with up to a million followers, or those mega-influencers with larger audiences that we might typically associate with celebrities.

In healthcare, pharmaceutical companies are drawn to these SMIs because they create greater “brand engagement” than any pharmaceutical company messaging. Why might that be?

The Health Belief Model (HBM)

To understand how influencers can move the behavioral needle in healthcare, the researchers relied on a model, HBM, that, in other research, is predictive of “preventative behaviors, self-management actions, and clinic use rates.” It has six components:

  • Perceived susceptibility – the subjective evaluation of your risk.
  • Perceived severity – the personal assessment of this condition's seriousness regarding morbidity and mortality and its impact on your social and “familial well-being.”
  • Perceived benefit – will the action reduce your severity? A necessary additional consideration is your “susceptibility to accepting recommendations.” 
  • Perceived barriers – your perceived obstacles to adopting the health actions.
  • Cues to action – what type (internal, i.e., thoughts or external, i.e., physician advice)and how many nudges are necessary to move you.
  • Self-efficacy – your perceived belief in your “capabilities and confidence in implementing a discipline of action that supports the proscribed behavior changes.”

Two quick notes. Many of the sociocultural components, such as social well-being or susceptibility to accepting recommendations, were never clearly a part of the COVID vaccination messaging by the government. Self-efficacy, autonomy, is a critical driver of influence; it motivates changing behavior irrespective of the hurdles.

Patients frequently turn to social media for health information for various reasons. Physicians are spending less time with patients, and financial and access barriers exist. But one needs to be health literate to separate the true from the less than truthful. (A topic I have written about in the past.) In short, health literacy is the ability to find and use the information needed in making health decisions – it involves an understanding of numbers and words and is entangled in a patient’s socioeconomic and cultural worlds. But words of explanation from knowledgeable physicians and nurses “are often too complex and supersedes the reading skills of the general population.” While most adults in the U.S. have “intermediate” health literacy, “more than one-third have basic or below-basic skills.” [1]

Nothing communicates as well as a good story, especially one with an emotional component that facilitates remembrance. Individuals with lower health literacy often learn better from stories and narratives rather than charts and talk. These individuals often turn to and trust social media for health information because it is often packaged as stories.

“In theory, there is no difference between theory and practice. In practice, there is.” Yogi Berra

One trusted source of web-based medical information are online health communities – niche communities that share their experiences and support one another. It is within this community that patient influencers communicate the complex information needed to make a healthy choice based on their “lived experience” (implicit knowledge), not “book learning (explicit knowledge).”

The researchers conducted extensive interviews with 26 patient influencers – no p values here. Seventy percent were women, and there were a variety of chronic conditions, including fibromyalgia, Parkinson's disease, and asthma. The researcher identified three themes used by patient influencers to communicate complex health information, in this instance regarding pharmaceuticals, to their followers.

  • Understanding disease through experience.
  • Staying informed on the science or field.
  • Suggesting that physicians know best.

“It’s like I want to be giving facts about things, but at the same time, I just want to tell what real life looks like in it.”

All the influencers live with their condition and consider themselves “expert patients … well-versed in the healthcare system,” something I would describe as a Sherpa. The primary motivation, it seemed, was one of paying it forward – providing information and resources unavailable when they were initially diagnosed. Information was often in the form of lived experience; that is, while acknowledging many paths, they felt “compelled to share their journey on the web.”

There was significant engagement between the influencers and their audience of followers. In describing their experiences, influencers expressed vulnerability and encouraged their audience to share and respond. These emotional connections enhanced the influencer's perceived authenticity, a key factor the authors felt built community online.

“I feel like I have a unique skill set where I’m not trained in the neuroscience of migraine, but I can read peer-reviewed research and get the gist of it, minus the really technical sort-of-science-y parts.”

The influencers all reported staying current with their specific disease's changing knowledge and treatment. A small percentage read medical studies and sought to “translate” them to the community. Another group shared news releases from pharmaceutical companies. As it turns out, this sharing was not prompted by financial gain but in an effort by the influencers to remain a credible source within the community.

Roughly 70% did work for pharmaceutical companies, but when interviewed saw the information they provided as a benefit and support to their community. They were careful never to “leave my patient lane.” The means of doing that included only discussing medications they had used. The influencers did seem to reflect the general view towards Pharma, with 54% referencing a “love-hate” relationship and 23% applauding Pharma’s patient-centeredness. 

“What worked for me may not work for you.”

All the patient influencers acknowledged that illness and disease present differently for every patient and that it was outside their expertise to offer medical guidance.” That guidance was deferred to physicians.

What is it that makes these individuals influential?

What is their “secret sauce” making them more able to nudge behavioral change when messaging by health professionals is not as effective?

Their most significant advantage is an accessible audience, focused listeners seeking information and ways to reduce the adverse impacts of their chronic disease. The influencer also comes with an advantage, the “lived experience” of the chronic illness allowing them to communicate with little loss in translation; both influencer and audience speak and live similar lives, at least regarding chronic illness. In their role as “expert patients,” influencers open up, telling their disease journey, its ups and downs, successes and failures. Sharing their narrative makes them vulnerable, but that increases their credibility and authenticity.

Influencers’ stories validated their followers' experiences; they were compassionate and empathetic. [2] Influencers made a special effort to be honest and transparent; after all, each influencer in the study collaborated with pharmaceutical companies. Patient influencers were empowering, providing a social support network, which contributes to self-efficacy, the most important of beliefs in changing one’s behavior.


[1] That should stand as an indictment of our education system more than the intelligence of our population.

[2] As opposed to sympathetic. Sympathy is an expression of care; empathy is “walking in their shoes.”


Source: Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With “Patient Influencers” Journal of Medical Internet Research DOI: 10.2196/41867


Chuck Dinerstein, MD, MBA

Director of Medicine

Dr. Charles Dinerstein, M.D., MBA, FACS is Director of Medicine at the American Council on Science and Health. He has over 25 years of experience as a vascular surgeon.

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