Patient Leaders: The Modern-Day Barbershop for Healthcare

Published March 13th, 2023 | 4 Minute Read

By Amrita Bhowmick
Chief Community Officer
Health Union

The ability to reach and meaningfully engage with patients is not a new challenge for public health officials nor brands. This is especially true for at-risk populations where creative methods of engaging community leaders have often been the main point of connection and education. 

Understanding the role Patient Leaders (PLs) play and how they best deliver messages to followers can bridge the gap between the healthcare system and those it serves, providing both community and the possibility of improved health outcomes.  

Using community figures as a source of motivation and confidence 

Low health literacy, medical mistrust, societal pressures, and access are all barriers healthcare providers and marketers face in effectively connecting with patients. In the past, trusted leaders within common places of kinship, like barbershops and churches, have been successfully utilized to deliver health-related messages and motivation.  

Efforts surrounding faithful barbershop patrons have shown that integrating health-related messaging and support into spaces of community can lead to greater comfort and confidence with taking ownership of health and seeking care. This effect has been shown across multiple areas of healthcare, from encouraging mental health support, improving blood pressure control, and increasing participation in preventative screening programs.

Translating the tried-and-true barber to the digital age

In recent years, social media has become a staple for entertainment, information, and behavior formation. With so much information available, and factual integrity dwindling, brands are struggling to directly connect with their market. In a similar vein, lower health literacy has become a major source of disconnect between the information available and the ability to truly understand and act upon it. Organically, patient leaders have arisen as a way to bridge both gaps.

Social media users are 92% more likely to trust “influencers,” like celebrities and PLs, over traditional marketing efforts. In fact, younger generations are increasingly turning to social media for health information, with 20% of Gen Z asking doctors about a treatment they learned about from an influencer.  Despite this, there are still varying levels of connection, efficacy, and power within these relationships. Typically, a celebrity is one admired by many from a distance while patient leaders are often devotedly followed by a few.

Although PLs may have a fraction of the following “celebrities” do, they often pay off that difference in spades when it comes to critical aspects of rapport building that lead to behavior change. PLs are uniquely positioned to tap into vulnerable, shared experiences from the perspective of a healthcare veteran to drive authenticity, accessibility, and motivation—factors that are often lacking in traditional health education, marketing efforts, or massive celebrity followings.

A seasoned PL then takes on the modern-day social media equivalent of the barber. They can authentically provide important health information to improve outcomes while also acting as a new, powerful vehicle for direct-to-consumer marketing. However, unlike the barber, they can be accessed from nearly anywhere, anytime, something especially important in at-risk or hard to reach patient populations.

Understanding the approach of PLs 

Identifying PLs and their unique positioning is only part of the equation. Understanding how PLs approach their followers and what messaging is important can help drive meaningful partnerships between social media and the branded space.

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We surveyed a diverse group of PLs from Health Union’s Social Health Network to better understand how they talked about pharmaceutical medications with their followers. In total, 26 in-depth interviews were conducted with PLs diagnosed with lupus, fibromyalgia, HIV, asthma, and more. When it came to best or preferred approaches for communication, three key themes emerged:

  • Sharing experiential expertise with a health condition 
  • Staying informed of developing science 
  • Emphasizing guidance rather than medical advice 

Experiential expertise 

PLs take great pride in being “expert patients” and “well-versed in the healthcare system.” This veteran identity often drives PLs to openly share experiences in an effort to give back to their community. Many PLs feel that this prevents information or support gaps they have faced in the past. 

Raising awareness, decreasing loneliness, normalizing disability, and improving quality of life were also all top goals. As a result, PL-driven relationships often outpace the level of community felt across massive celebrity followings. Although their followings may be smaller, shared goals are more personal and direct, leading to a powerful kinship.

Trusted source of knowledge 

Organically, and often as an offshoot of sharing experience, PLs tend to stay abreast of current scientific trends for their disease state. When it comes to pharmaceuticals, some serve as a vehicle for directly sharing news releases while others translate results in laypeople’s terms to be consumed by a broader audience with varying levels of health literacy.

While not all participate in partnerships with for-profit brands, there is a unifying desire for credibility through perceived expert status. Being looked to as a source of knowledge, validation, and advocacy helps shape the way PLs generate content and engage with their following. 

Guidance rather than advice 

Common concerns about the partnership between pharmaceuticals and social media are safety and information integrity. False claims are frequent on social media and can be a barrier to its safe and accessible use. However, seasoned PLs take great care to effectively balance motivational engagement and precarious medical advice.  

Expert PLs can monitor conversation and smoothly offer a cue to action without providing explicit direction. Whether it is encouraging a follower to contact their doctor or instilling a sense of self-efficacy that inspires healthy behavioral change, safe guidance can be achieved within the communities of veteran PLs.

What do these findings mean?

While patients are exchanging “lived” experiences about specific medications, including side effects and disease symptoms, PLs can engage in meaningful and responsible health education and promotion. PLs are able to uniquely connect with other patients on their disease journey while creating a safe space free of stigma and shame. This connection can facilitate self-efficacy amongst patients that leads to strong communication with their healthcare providers and better overall quality of life.

It is important to note that the PLs in this study were primarily drawn from the Social Health Network. They often have access to support resources or additional educational opportunities, and have a longer tenure being a PL. Not all PLs are equipped the same, and evidence has pointed to a plethora of misleading health information on social media. PLs like the ones interviewed set a necessary high standard for what is needed to have a safe, successful PL-patient (or PL-brand) relationship.

Ultimately, a seasoned and responsible PL can become the modern day, virtual barber, providing authentic information, community, loyalty, and access to their followers. When aligned with the right partners on social media, PLs can bridge the gap between the healthcare system and those it serves, including those who are often hardest to reach.

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An iceberg is seen both above and below the water.

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Getting any type of diagnosis is life-changing. When that diagnosis is the “C” word, there’s a heaviness that raises a whole range of emotions and questions often relating more to mortality than morbidity–not to mention there can also be a fair amount of guilt associated with survival. While great strides have been made in the availability and effectiveness of cancer treatments, the psychosocial aspect associated with having cancer hasn’t kept pace.