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Vintage Wineland: Claire Shares Vital Patient Insights

VP Strategy

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Claire Wineland has plenty to say about the patient experience, and pharma needs to listen. A vivacious and inspirational patient advocate since age 13, Claire has been helping the CF community throughout her teen years, and eagerly shares some of her valuable insights with us.

We’re all patients. Whether we personally face health challenges or have loved ones who do, we were all born into a healthcare system and remain participants throughout our lives. That obvious reality makes the notion that patients are somehow inherently different than us erroneous and insensitive—yet, too often as healthcare marketers we objectify patients as market research “audience segments” or technological “end-users,” ostensibly with the belief that neutral analytics will help us better understand “them” and “their” habits and needs.

As we’ve recently discussed, discovering the real patient experience goes beyond traditional market research, and the patient-centric healthcare revolution transcends mere technology. Behind the data and the gadgetry are flesh and blood people we know and love, in need of support not just “solutions,” genuine empathy more than detached “engagement.” Maps getting in the way of territory, process superseding outcomes, our heads have interrupted our hearts, a situation now demanding a paradigm shift that starts and ends with listening.

Luckily for us, Claire Wineland is talking and has important things say. Whether implicitly through the eponymous Claire’s Place Foundation, or explicitly during an interview with Klick last week, Claire brings the real patient experience to everything she does. In support of families living with cystic fibrosis, she’s applied her infectious personality to heighten awareness and provide education, skills, financial and emotional support. Along the way she’s discovered what truly works with patients—and what doesn’t—and shares a few of her thoughts:




Patients are More than People Who Are Sick

“Healthcare companies seem to assume that patients are always obsessed with their conditions,” says Claire. “As if we wake up every morning and all we do is worry about what’s wrong with us. I don’t want to burst anyone’s bubble, but we’re actually real people leading busy lives. That means we’ve got many things on our minds aside from our health, and respond best to broader subjects that interest us. So don’t be surprised if we tune out your marketing messages, especially if they keep reminding us how sick you think we are.”

Generally aware of this sentiment, for years pharma has reached out to patients with “unbranded” disease education campaigns, usually with a few objectives: 1) To help patients recognize a possible health problem and showcase an array of treatment solutions; 2) To encourage patients to register into a relationship management program offering permission to “flip” to a branded communication stream; and 3) To ultimately drive a point of care conversation with their physician, ideally mentioning the sponsored drug by name.

“Unbranded” campaigns extend the boundaries of communication because they don’t require fair balance—but important safety information isn’t the only thing they’re usually missing. As Claire points out they also lack empathy, and the realization that focusing entirely on disease can prove as alienating as focusing entirely on drugs. The pressure for ROI compels pharma marketers to at the very least lead with health problems that build the implicit need for treatment: But leery patients usually have other things on their minds.

Such an approach can nonetheless work, and has, with the right ethnographic analyses and emotionally resonant creative, actually benefited millions of patients. What Claire stresses, however, is that relationships live or die through trust, a sentiment that’s challenging to engender when pharma companies tacitly assume patients are eager to immediately embrace content that’s deeply personal and tangential to the rest of their lives. Instead, we should try to better understand what patients naturally like to talk about, and take things from there.


What’s Important to Pharma Might Not Be to Patients

“In addition to insisting we’re sick people totally defined by our sickness,” continues Claire, “is the belief that health is our biggest challenge. Having cystic fibrosis obviously isn’t easy, but what if I told you that doing my taxes for the first time was one of the most traumatic things I ever had to go through? That really freaked me out! Not what you’d expect, right? That’s because you define me as a ‘Cystic Fibrosis Patient,’ and not ‘Claire Wineland.’ Your research tells you I struggle with this and that—but have you ever really asked me?”

Madison Avenue has long known the value of “Lifestyle Brands” and how transforming carbonated caffeine-laced sugar water into “The Real Thing” within the minds of the audience could redefine a generation and generate billions in profits. For both better and worse pharma marketing is regulated by the FDA/OPDP, so such outlandish but emotionally compelling campaigns are disallowed. The good news is overtly false claims are illegal; the bad news is pharma marketers can’t talk to patients in the way patients like to be talked to.

Or can we? Ironically enough, digging too deeply into disease information within branded channels quickly becomes problematic due to the increasing risk of making a claim. By the same token, spending much if any time and energy on content not directly related to drug information seems pointless and equally problematic. Visit most pharma DTC websites and find all the requisite safety, administration, efficacy, and reimbursement information—but little to zero “lifestyle” content patients sick of the overt disease and drug info could embrace.

The key insight from Claire is that traditional approaches to branded pharma content remain self-limiting, especially as the social media ecosystem exponentially explodes with health conversation. A possible solution is to explore new (and equally compliant) ways to share drug information within the context of broader topics so that patients feel more welcome, comfortable, and understood. Now the boundary between social channels such as Facebook and pharma brand.coms is entirely rigid—can we imagine when and how they might not be?




Create a New Language for Patients and Health

“Let’s face it, being sick isn’t considered sexy. Quite the opposite, right? I know young cystic fibrosis patients who hide their conditions from friends and even family because they don’t want to be stigmatized, don’t want to seem disadvantaged in front of their peers. Since ‘sick’ is the opposite of ‘healthy,’ who wants to deal with that? Instead, we need a new and more empathetic language to describe patients, their conditions, and their lives. We don’t want pity, we instead want your love and to feel comfortable as an equal participant in society.”

Arguably no communications effort has done more to destroy painful stereotypes and along the way revolutionize advertising than the Dove Campaign for Real Beauty, a best-in-class example of how annihilating stigma helps deeply connect with audiences and powerfully drive product. Designed to “imagine a world where beauty is a source of confidence, not anxiety,” the bold campaign celebrated the bodies of women outside the conventionally rigid boundaries of the beautiful with the goal of extending and ultimately redefining beauty itself.

The spirit and success of the Dove campaign and others like it have encouraged healthcare companies to similarly take on the stigma of various diseases. When successful the results have transformed helpless patients into motivated information-seekers, informed decision-makers, and sometimes even fearless fighters. Despite the positive evolution toward empowerment, however, the tone is usually somber, heavy, and claustrophobic—begging the question of ultimately freeing patients from the burden of being defined and bound by “sick.”

Interestingly enough, hopeful progress has already been made in another heavily regulated industry, finance. Despite the regulatory restrictions and seriousness typically afforded banking, investment, and anything financial, the use of humor has become an increasingly common and effective way to connect with audiences and sell services. Just as eCommerce has evolved from a risky curiosity to industry standard, the tone in financial advertising has shifted from boring authority to lighthearted fun. Might we some day laugh at cancer?


Turn Your Brand into a Patient Advocate

“I’m a huge believer in patient advocacy, something I’ve been actively doing since founding my own non-profit when I was thirteen. Our success comes from directly connecting with families. My mom and I have been through the same things the CF community goes through, enabling us to understand them and help create community. Patients don’t want to be sold to—they want a place to share and be more than just their illness. So share with us—more than just information about drugs, but conversations important to us and our community.”

Most chronic conditions strike in adulthood—hypertension, Type 2 diabetes, central nervous system disorders, autoimmune diseases, cancer. For Claire and millions of other young patients like her, growing up with a serious illness is both a burden and a reality they eventually get used to, a dichotomy that ironically makes life easier. “Sure, being born this way is challenging,” says Claire, “but I’ve never known things to be any different. So I see older folks having a harder time, because they have to deal with changes much later in life.”

Several successes with childhood illnesses such as leukemia aside, pharma has focused predominantly on chronic diseases and older populations. As youth mature and adults grow old from this generation into the next, tough adjustments melt away before the congenital habits of billions born into a digitized world of smartphones, social networks, the Internet of Everything, and soon self-driving cars, ubiquitous drones, and robots. These seniors-of-tomorrow not only expect but demand that their healthcare brands listen and talk back.

The time to evolve pharma brands from “pills” to “solutions” to “services” to “advocates” has arrived. For healthcare professionals, pharma must remain the authoritative source of FDA approved data from which informed treatment decisions can be made. For patients and their caregivers, pharma should continue to apply its prodigious talent and resources to connect with consumers on their own terms. “End of the day,” Claire insists, “all patients want the same things: Love, community, dignity, and support.” How better to serve public health?




Connect with Claire and Klick

To learn more about Claire and her amazing advocacy work for the cystic fibrosis community, check out The Clairity Project and show your support for Claire’s Place Foundation. To see about how Claire and Klick Health have collaborated to bring insights to the healthcare community, take a look at her inspiring presentation at MUSE NYC. And to discover how Klick is bringing the future of real patient experience to some of the top pharma brands today, talk to our own Rachel Affoo. We can’t wait to connect with you!

More About the Author

Michael Spitz

A digital health expert since before digital health was cool, Spitz has since developed omnichannel campaigns for top pharma and device brands, and helps drive agency innovation, digital transformation, and emerging channels. See him present at conferences, read his blogs, and follow him for the latest trends and opinions on Twitter @SpitzStrategy.

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