Hetlena J.H. Johnson is not your typical patient. A self-described “tomboy for life” who can still finesse a 360 on a skateboard, Johnson was first diagnosed with lupus in 1993. A high school teenager at the time, her doctor told her two things: Keep a diary to track how you’re feeling—and prepare not to live beyond your twenties.

She took the doctor’s advice about the diary. In one entry she wrote: “Am I dead yet? Well dang! The doctor lied!”

Twenty-five years later, Johnson isn’t just alive, she’s helping others with lupus find hope and help through her books, podcasts, blogs, and a steady stream of inspirational posts on her social media channels.

Tens of Thousands are Influencers

By any measure, Johnson is the quintessential patient advocate—compassionate, engaged, well-informed, and fiercely dedicated to helping others navigate a complex condition. But Johnson is more than that. In the “always-on” era of Facebook, Twitter, and Instagram, her advocacy work is amplified, and her reach into the lupus community online is exponentially greater than ever. What she posts doesn’t just get read, it gets shared. So while there is little doubt about Johnson’s advocacy creds, she is also a bona fide patient influencer.

Every industry has influencers. In a credentialed industry like healthcare, the most prominent have been highly pedigreed doctors, researchers, company founders, and innovators.

The explosion of social media has changed that. With the emergence of hyper-connected and hyper-engaged healthcare consumers, patients themselves have joined their ranks. We are currently tracking tens of thousands of patient influencers across virtually every health condition.

Today, patient leaders like Johnson dedicate countless hours to sharing their insights and connecting with others. Their currency is trust and the ability to translate their real-world experience with a chronic disease into the kind of authentic content their peers crave. With a digital footprint that includes blogs, social posts, and video streams, they’re able to organically reach a community of devoted followers on a 24/7 basis.

Influencers are viewed as key allies for brand marketers looking to connect with patient communities. It’s not just big pharma with big media budgets, but small to mid-sized biotech companies hoping to build awareness of new therapies or treatment options among patients battling rare and orphan diseases.

What the Buzz is About

The buzz surrounding influencer marketing isn’t surprising either. A study by Collective Bias found that 60% of consumers said their purchasing decisions were influenced by a social media or a blog post written by a trusted peer.

A recent survey conducted by the World Federation of Advertisers (WFA) found that 65% of global brands are planning to increase their spending on influencer marketing in the coming year. It found there were two overarching goals: Boosting brand awareness (86%) and improving brand advocacy (69%).

As is the case with pharma brands, much of the focus is on a specific segment of influencers known as micro-influencers—people like Johnson who have between 1,000 to 10,000 followers across social media channels such as Facebook, Instagram, or YouTube.

Micro-influencers reach fewer eyeballs than macro-influencers, who are often celebrity types such as Kim Kardashian. But in niche communities, like those pharma brands are targeting, micro-influencers are far more likely to reach the eyeballs that matter.

A 2017 survey conducted by WEGO Health underscores the point (https://bit.ly/2PB66Zp). We learned that when information about a specific medication is presented by a pharmaceutical company and then shared by a patient influencer, 87% of their followers will ask their physician about it. In addition, the survey found that 8 in 10 will share the information with people they believe would be interested.

The key driver is trust—the Achilles heel of the pharma industry. Despite nearly $6 billion dollars spent annually on brand building campaigns, only 9% of consumers believe pharma companies put patients over profits. In this environment, it makes sense to work with trusted intermediaries who can help get information into the hands of their fellow patients.

A case in point: GlaxoSmithKline’s (GSK) “Us in Lupus” campaign. Launched by GSK’s marketing team in the spring of 2018, Us in Lupus offers people living with the disease a destination website where they can access tools such as a symptom management tracker and a doctor discussion guide. The challenge for GSK was not pulling together the right content, it was getting it seen. For help, the marketing team turned to Hetlena Johnson and other recognized influencers with devoted followers in the lupus community. The influencers were asked to tell their stories in their own voice, using homegrown videos and social posts that could be shared broadly through social media channels.

It worked. A 90-day promotional campaign for Us in Lupus on Facebook and Twitter drove more than 1.6 million impressions and nearly a quarter of a million video views. By the end of the campaign, GSK saw an increase in qualified leads three times greater than any other source they had used previously. That, in turn, drove four times more qualified leads to a CRM database they use for continued outreach efforts.

Ethical Concerns and Unintended Consequences

For some industry observers, this degree of influence among patients is troubling. It raises thorny ethical questions about whether influencer marketing, particularly as it relates to individual health decisions, could have unintended consequences.

Skeptics of the model see an inherent conflict of interest if patient influencers are paid by drug companies. They argue that influencers could end up blindly advertising products just so that they can be paid, without considering the potential risk they could cause to the people who act on their recommendations.

“There’s a myriad of ethical issues around this,” says Lisa Gualtieri, an Assistant Professor at Tufts’ School of Medicine, in a piece written by Kate Sheridan for STAT. “What’s the responsibility of various stakeholders to educate people that this is potentially dangerous and harmful?”

For Erin Smith, a patient influencer in the celiac community, it’s a responsibility she takes seriously. “I would rather be honest with my readers and share both the good and the bad than to be swayed by compensation,” Smith said. “I am upfront with brands and tell them I will write my honest opinion as well as disclose any payment or free products.”

This sentiment was echoed by Kat Leena, a patient influencer in the gastroparesis community. “I have never accepted anything that doesn’t align with my values and have built my reputation on that. The patients trust me…so I don’t compromise on it.”

FTC and Transparency

In the meantime, the FTC has promulgated regulations to ensure transparency. It requires that influencers disclose when they are being paid for their endorsement. Similarly, if an influencer endorses an FDA-approved drug, they are required to provide a link to information about the approved indications and the risks.

The ultimate safeguard is the healthcare provider. Unlike most other consumer products, a patient is not at liberty to simply purchase on a whim any new drug or device they may have just learned about through an online post. In fact, there are limits to what even the most persuasive patient influencer can do in an industry as highly regulated as pharma. If one of their followers believes they could benefit from a new therapy or treatment option, they have only one choice: Consult a doctor.

As a practical matter, pharma brands would be wise not to hire patient influencers solely to promote a specific drug. It’s better to instead work with influencers who can help with disease awareness and educate others about steps they can take to better manage a complex or chronic disease. Brand marketers should recognize that asking a patient influencer to pitch a specific drug is likely to be counter-productive. Work with influencers to reach the patient community through a voice that is both empathetic and authentic.

The patient influencer model is evolving. There is still much to learn about what works—and what doesn’t. But if there’s one thing we’ve learned, it’s that patient influencers like Hetlena Johnson can use their stories and real-world experience to help others better understand and cope with their condition. In the end, what patients want from pharma isn’t just a new therapy, it’s help leading a healthier life.


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