The Road Ahead: 2020 Lessons and 2021 Predictions

We entered 2020 with our predictions and plans, never imagining that a global pandemic would change everything within a few short months. It led us down a road on an unexpected journey, challenging the healthcare system, the pharmaceutical industry, and humanity beyond measure.

After what the world experienced this past year, it feels bullish to make predictions while still in the path of the storm. It does, however, feel appropriate and, dare I say, even necessary, to reflect and take inventory of the lessons we have learned and how these lessons can help us predict what’s to come in the new year.

The Lesson: A Walk in Their Shoes

If I asked you to complete the phrase, “2020 has been….”, I undoubtedly would get mostly negative statements—some of them likely pretty crass. But despite all the negative, 2020 has been the year that the world took a humbling walk in the shoes of the chronic care patient. A year that deepened empathy and understanding toward the most vulnerable of us.

As an industry and individually, we navigated health uncertainty, feelings of isolation, and many common frustrations that chronic care patients regularly faced long before COVID-19 was a staple in our daily vocabulary.

Chronic care patients often share that there are two phases to their healthcare journey: “the before” and “the after” diagnosis. The frustration of longing for the before and the living in the after is a push and pull we all now recognize and empathize with having experienced a pandemic.

We now recognize the many things we took for granted in “the before” and understand how different those things may look in “the after.” We understand this experience will fundamentally change the way life looks moving forward.

We can also empathize with isolation. While many of us have lived our lives free from isolation, many chronic care patients have not been so fortunate and were quarantining and self-isolating out of necessity before it was “cool”.

And of course, living our lives with our mind constantly running risk analysis around our health is something we can draw parallels to. “Is going to the store really worth risking my health?” or “should I call the doctor or are these just symptoms of a common cold?” These once lightly made decisions take on a new meaning today.

The Prediction:

What this means for marketers is that we have a newfound sense of empathy and understanding of the patients we all serve. In 2021, we predict that empathetic messaging in healthcare marketing will accelerate and trend.

The Lesson: The Telehealth Tidal Wave

The telehealth train was coming long before the onset of COVID-19 and, as with many other facets of digital adoption, we saw the pandemic as the great accelerator.

In 2018, we surveyed the WEGO Health Patient Leader Network and about 1 in 5 (22%) of Patient Leaders had tried telehealth. Fast forward to 2020 and WEGO Health’s recent research in partnership with the Digital Health Coalition showed that 4 in 10 Patient Leaders utilized telehealth before the pandemic, and 9 in 10 have increased their telehealth utilization since the onset of COVID-19.

We are seeing pharma brands begin to leverage telehealth in a number of ways, from digitally providing educational information and patient-provider telehealth visits to full-on brand launches like that of Imvexxy with telehealth as the main prescription driver.

Digital technologies such as wearables have also increased exponentially, but patient desires in this area are still very practical in nature—the strongest for medication management and self-monitoring tools.

The Prediction:

The rapid adoption and development acceleration of digital technologies is just the beginning. We predict that 2021 will see an increase in strategic partnerships incorporating telehealth and digital technologies into the “patient experience,” with many more brands like Imvexxy partnering with Patient Influencers to spread the word. These partnerships and technologies provide the additional value patients are seeking and also help to strengthen adherence.

The Lesson: A New Day for the PSA

No, we’re not talking about prostate-specific-antigen levels (those are important too), but the good old fashioned public service announcement. While some conditions like HIV have been leveraging PSA’s for consumers for years, we haven’t seen them adopted by the industry in masse.

But 2020 brought a new style of PSA: the “Don’t Neglect Your Health” PSA. We saw television, digital, and social media marketing geared toward encouraging patients to continue to go to their doctors’ appointments and stay on their therapies.

From AstraZeneca “New Normal Same Cancer”

We have even seen industry thought leaders and scientists embracing hot new channels like Tik Tok as an opportunity to reach people to dispel misinformation and spread public safety awareness around the COVID-19 vaccine and science.

In my [humble] opinion, there has always been a lack of messaging as it relates to adherence coming from pharmaceutical manufacturers. With a staggering 50% of Americans not taking their medications as prescribed, “medication non-adherence” leads to preventable deaths and increased costs to the system.

In the patient community, we see a much higher emphasis on adherence messaging as Patient Influencers understand their power to drive patient behavior. Studies show that patients who receive peer-to-peer support services are more empowered and educated, and as a result, are able to make better healthcare choices and access resources that reduce the barriers to care.

The Prediction:

There is an opportunity for the pharmaceutical industry to partner with patients and HCP’s to continue to spread awareness and reinforce the value of keeping doctors’ appointments, staying on therapy, and managing mental health long after COVID-19 is in the rearview. This is a “hopeful” prediction of ours because, in this digital era, health ownership has never been more important.

The Lesson: A Brave New Virtual World

And we thought we were virtual before 2020! We have to look back and chuckle at our naive selves. HCP marketing, consumer marketing, product launches, and conferences and events all experienced rapid digital transformation.

Within a few short months, we’ve seen brands embracing new technology and partnerships that were years in the making, and the traditional rep-model has been flipped on its head.

Of course, many of these changes were a long time coming with COVID-19 again functioning as the great accelerator. But the question remains, “what ‘normal’ will we return to when this pandemic ends?”

A recent FiercePharma article stated (and we agree), there is no going back. When it comes to in-person promotion, an August 2020 Accenture survey found that 87% of HCP’s want either all virtual or a mix of virtual and in-person meetings after the pandemic ends. As a former pharma rep, I can say from experience in the field that this particular shift was a long time coming.

And the rep model was not the only major change. With nearly all in-person events (both industry and patient-facing) brought to a halt in 2020, the pharmaceutical industry has had to pivot like never before as it relates to both internal and external events.

While we miss in-person events, we also recognize that there is one person that virtual events work really well for—the chronically ill patient. In the past, to attend an in-person summit we would see patients have to move mountains to travel and exhaust themselves in a weekend with a nonstop, action-packed agenda. With many events becoming virtual in 2020, it provided the opportunity for patients who ordinarily could not travel to attend.

And to that point, we also saw a rise in patient webinars in the industry. In a WEGO Health survey conducted in April 2020, when asked what virtual solutions patients’ were seeking from pharma companies, 41% of patients shared that educational webinars were important to them.

We have seen more brands successfully executing webinars, “live” events, and forums utilizing social media and other digital platforms that allow patients to connect with one another and the community seems to be enjoying this new normal.

The Prediction:

While we know there is value in in-person events that is difficult to replicate virtually, we also predict this trend will continue to grow stronger far beyond 2021. The savviest of brands will tap into patients to design, execute, and help promote their virtual events to truly incorporate the patient voice in every digital moment that they are engaging with their audience.

The Lesson: The Year of the Patient Influencer

In 2020, life as we knew it was put on pause. The world turned to social media for information, as a form of escape, and to stay connected. Healthcare queries topped all other searches, and with studio content creation brought to a halt, patient influencers took center stage.

In a recent quarterly landscape survey, WEGO Health learned that 85% of patients are receptive to branded patient influencer marketing. Patients shared that the top considerations in branded campaigns were not the patient influencer’s reach, but their authenticity and transparency.

In the same survey, we found that patients had a greater trust in patient influencers over lifestyle influencers and that patient influencers have a greater influence in medication research over lifestyle influencers.

The Prediction:

While we don’t anticipate celebrity influencers or endorsers going away, we do anticipate more of a mix of influencers across the board in healthcare—including physicians!

With more receptive patients, we’re also seeing more pharma brands dip their toes into the influencer marketing waters. In a recent webinar produced by our team, over 50% of pharma marketers and agencies polled said they were either already testing influencer marketing or planning to do so in 2021. Of those same participants, 2 in 3 said they intended to partner with a mix of patient influencers (nano to mega) in 2021.

We predict this adoption will accelerate, and if done with an emphasis on authenticity, we also anticipate a rise in patient trust as a welcome secondary result.

The Lesson: All Eyes on Inequality & Health Disparities

Not that long ago, health inequality and disparities were the elephants in the room, taking an uncomfortable place under the rug in the healthcare conversation.

But with black and brown communities falling victim to COVID-19 at disproportionately higher rates coupled with horrific events of systemic racism like the murders of George Floyd and Breonna Taylor, the industry began to open its eyes to the problems we face.

While telehealth adoption rates skyrocket, how will this impact an already daunting digital divide? In a world with “no child left behind,” what about the patient? Patients are being forced to become more accountable for their outcomes, and while some are swimming, others are sinking.

The good news is that, as an industry, we are starting to have these difficult conversations. We are seeing a rapid rise in senior-level Diversity & Inclusion roles within pharmaceutical companies and agencies. We are also seeing a rise in pharma and agency advertising and promotion of D&I to the public.

With movements like Insulin For All and organizations like BLKHLTH finally gaining momentum and a place in the spotlight after years of tireless work, 2020 saw the industry step up in bigger ways than ever before.

The Prediction:

While strides are being made, there is still much work to be done. and we predict that the industry will continue this important work in 2021 and beyond.

The Lesson: Spotlight on Science

Having spent the better part of my career in this industry, I have always known the amazing things that this industry is capable of. This year, the rest of the world got to see.

We watched as pharma companies developed, studied, and gained approval for two COVID-19 vaccines in an unprecedented timeframe with unprecedented efficacy. We watched as scientists and healthcare professionals worked around the clock, their faces scarred with bruising from the masks they wore all in an effort to save lives. We watched as our loved ones suffered, were isolated, and some were buried, as a result of a healthcare pandemic that we as a society never saw coming.

COVID-19 put a spotlight on science and the healthcare industry like never before, and the world got to see the vital work that pharmaceutical companies do.

There has been conflicting research in 2020 to assess how COVID-19 has affected patient trust with Harris Poll research looking optimistic and recent Takeda research skewing more negative. While research is never apples to apples, it does help us to identify trends that are important for the industry.

While WEGO Health research showed that patient trust was relatively split, we did learn one important factor: patients who partner with pharma companies have a greater tendency to hold higher opinions and more trust in the companies with which they work. Gaining a glimpse behind industry walls helps patients to see that we’re all patients and people, with common goals and emotions.

The Prediction:

We predict that we will continue to see a rise in patient trust in the pharma industry in 2021 and beyond. Starting with influencers as an early barometer, trickling down to the patient population as a whole.

The industry has an opportunity to harness this momentum, and we predict that they will through making progress in diversity and inclusion, collaboration with patients, and empathetic messaging.

“Change is inevitable. Evolution, however, is optional.” – Tony Robbins

We look forward to what 2021 will bring for our industry!

6 Best Practices for Working with Patients on Creating Content

If you’re not creating content for your brand that features real patients, you need to be. Beyond the well-documented need for authentic content, marketing materials featuring patients are proven to resonate more with target audiences than materials featuring traditional stock photography. Many pharmaceutical companies are starting to grasp this idea, if only on a small scale. For example, GlaxoSmithKline’s ViiV recently launched a partnership with Shutterstock featuring free-to-download images of real HIV patients living their best lives in order to help dispel the use of stereotypes in marketing for the condition.

As more brands begin to adopt these trust-building marketing practices, it’s important to note that there are a few rules of the road when working with patients to create content and ensure a positive experience for both brand and patient. Here are six of WEGO Health’s tips to help brands start these initiatives off right.

1. Ensure your recruitment criteria for patients are rock-solid.

Once you know the type of patient you’d like to work with for your initiative (e.g., age, gender, diagnosis), you and your teams can focus on the right patient for the job.

2. Clarity is key.

You want to eliminate any confusion the patient you are working with may have. Your goal is to make sure the patient you’re working with to create custom content fully understands your program and its goals. It will build brand rapport with the patient and also build trust, resulting in even stronger content.

3. Authentic content only.

Keep the content’s style in-line with what the influencer usually publishes; otherwise, you risk the content being poorly received by the influencer’s audience. If it feels out of place from what users organically see, it sticks out like a sore thumb, and it may have the opposite of the intended, trust-building effect. For example, if you force a patient who is not an actor to read a script in order to appease MLR, it’s going to be clumsy, awkward and stale. There’s prolific value in UG-style content where patients speak as if conversing with a friend over coffee—not struggling in front of a teleprompter.

4. Do your research.

Or be prepared to start from scratch. Take the time to learn about the audience you hope to reach. Invest in truly understanding their wants and needs from pharmaceutical companies. This means having conversations directly with patients, not assuming what their challenges may be. Is it support resources? Is it real patient videos? What messaging resonates most with them? If you are taking the time, effort, and resources to create content featuring patients, take additional time to ensure the content you’re creating is what your audience needs. If you’re unsure where to start, WEGO Health offers patient insights programs to help get you connected and informed.

5. Be flexible with timelines.

I know, not an ideal tip, but when working with patients (especially if those who have a complicated diagnosis), you need to be flexible. For instance, a symptom of lupus is severe fatigue. A lupus patient may be a day late returning content due to a flare, and you should be prepared by factoring in extra days to your timeline to be conservative. This is not always the case, but something to keep in mind.

6. Compensate patients for their time.

This seems obvious, but you’d be surprised that some companies are unable to do so and others don’t consider it a factor when building a project budget. Exposure for patients is not payment. To ensure patients take your program seriously and produce their best work, they need to know they are being treated fairly by being compensated for their time, insights and expertise. Be sure to set aside some budget for patient compensation.

Pharmaceutical companies still battle significant distrust from patients and patient communities, but brand teams work hard to break through. Building trust through meaningful relationships and engagements with real patients is a step in the right direction. By including custom content featuring patients in your marketing campaigns and a campaign narrative written in collaboration with real patients, you’ve already taken that first step, and maybe a few more. It’s a best practice to take the time to understand your target audience, hearing their wants and needs directly rather than assuming you are on track to developing valuable content without them. Pair that with having a patient (or caregiver) who has personal experiences and tips to share with a broader audience, and you’re well on your way to a successful patient campaign.

If you’re ready to kick-off a patient-centric campaign but still don’t know where to start, contact the WEGO Health team and let us help build a custom program for your brand.

Pharma Influencer Marketing: Making the Case

Every day, more pharmaceutical brands are hoping to see the same outsized business results that other industries have found in influencer marketing – but pharma faces challenges far different from any other industry. How can pharma brands share control with influencers to build patient trust and engagement? How does trust translate to ROI?

In our most recent Quarterly Landscape Report, WEGO Health analyzed responses after surveying 263 of our members across 86 conditions to uncover patient influencer perspectives on influencer trust, action, attitudes toward pharma promotion, and partnership preferences.

Influence of Lifestyle Influencers versus Patient Influencers

Lifestyle influencers invite their followers to get a glimpse into their picturesque lives, revealing many aspects of their personalities. They typically share multiple talents or passions, like fashion, home décor, travel, and family life with their followers. To earn the title of “influencer,” they typically have large followings on the macro (10K – 1M followers) or mega (1M+ followers) level. They are masters at their craft, churning out beautiful content on multiple platforms, with the most popular earning a comfortable living on paid partnership income. While lifestyle influencers numbers have been on the rise over the last decade, they did not focus much on health issues such as living with medical conditions and taking medications until much more recently.

Because personal health journeys are a newer addition to the parts of their lives influencers share with their followers, there is great skepticism on the receiving end. “I’ve been following you for years, so why am I only hearing about your debilitating migraines now?”

On the flip side, health issues and medical conditions are the predominant focus of a patient influencer. Sure, they sprinkle in lifestyle content occasionally, but looking at the feed of a patient influencer, you mainly see their journey of living with a medical condition(s), inspiration and support for others, and documented experiences with medications and therapies. In a way, managing their condition often is their lifestyle. The pictures aren’t always pretty and the content doesn’t share only the highlights, but it’s real, raw, and authentic.

While there are patient influencers out there with sizable followings, the vast majority tend to fall more within the nano (1K-10K) to micro (10K-100K) categories. Their content is tailored specifically to their audience of patients living with or caregiving for their condition(s) versus the general population, and the smaller and more niche their condition, typically the smaller the reach of the influencer. By and large, they are not living off of the income they make as an influencer, but hustling in many forms from consulting as a patient in addition to full-time jobs to earn a living — all while still devoting many hours to the communities they manage and inspire. But don’t underestimate their impact. Nano and micro-influencers have greater, more impactful engagement with their followers and a well-established foundation of authenticity and trust in their communities.

While the patient influencer is a relatively “new” phenomenon to be brought into the healthcare industry spotlight, these folks have existed for over a decade. It’s only in recent years that they’ve started to gain notoriety among marketers for the value that they can bring.

So the question is, when it comes to health information, who is trusted more, patient influencers or lifestyle influencers?

NOTE: For our research and analysis, WEGO Health surveyed our Patient Leader Network members who are both patients and, in many cases, patient influencers themselves to varying degrees. Within our network, we have advocates, activated patients, and influencers as members, and in digging into the data in this particular survey, we saw a 50/50 split between influencers and activated patients. Regardless of their personal “influencer” status, these people are patients first, and their perspectives on who they trust are more critical to analyze than perspectives of those in the general population. They represent the communities brands aim to reach and provide the best insight into the psychology of the patient mind.

According to our research, patient influencers handily win in the battle of trust. Exactly half of the respondents did not or only slightly trusted information shared by lifestyle influencers and only 14% felt that they could mostly or completely trust the information shared by lifestyle influencers in a sponsored ad or post. On the flip side, only 17% of respondents did not trust or only slightly trusted patient influencers. Over half (51%) mostly trusted to completely trust the information shared in a sponsored ad or post.

Lifestyle Influencer versus Patient Influencer Trust Factor Graph

Qualitative insights survey data we collected in the fall of 2020 shows that authenticity plays a big role in this equation. While lifestyle influencers may very well be living with the chronic conditions they discuss, they don’t always have the same level of knowledge and expertise to discuss these conditions as that of a patient influencer who speaks on it daily. Combined with the fact that many macro and mega lifestyle influencers are living above the financial means of the average patient and therfore have access to different and better resources, many patients feel that they just can’t relate.

When it comes to the likelihood that an influencer drives patients to research medications, the QLS results have a similar inverse relationship as the trust factor. Half of the respondents were not at all likely to only slightly likely to research medication that was promoted by a lifestyle influencer, whereas over half were mostly likely to very likely to research a medication promoted by a patient influencer.

Lifestyle Influencer versus Patient Influencer Trust Factor

An interesting curveball in this survey was patient community influence. When asked how likely patients were to research or ask their doctors about health information heard through or promoted by others in their communities, the results were overwhelmingly positive with 64% mostly and very likely. While this organic approach is the most coveted by pharma marketers, it is certainly the most difficult to scale, which is why many brands find the happy medium to be the patient influencer as a larger disseminator of information to their communities.

Influence to action lifestyle influencer versus patient influencer

Receptiveness to Branded Influencer Marketing

So, let’s talk about the approach. We know patients are receptive to health information and medication information shared by patient influencers, but what about the straight-up “brand mention”? How receptive are patients to fully branded ads and marketing messaging?

This was one of the most eye-opening findings from our survey because as it turns out, they are more receptive than many would think. Over half of patients are somewhat receptive and another 29% say they are very receptive to fully branded marketing.

Perhaps the more surprising statistic is found when we look at receptiveness to pharmaceutical partnerships. When asked how receptive they, as patients and influencers, would be to partnering with pharma on marketing and advertising initiatives, the large majority (86%) is somewhat to very receptive.

The most important word to focus on here is the word “partnership”. WEGO Health CEO, Jack Barrette, pointed out in our most recent webinar that patients are receptive to partnerships, but only if those partnerships are a true collaboration. This means honoring the expertise and autonomy of the patient influencer. The trust of their communities and their pride in their authenticity are not factors patient influencers are willing to sacrifice. For example, being told what to post, when, and how to say it might not ring as true to these patients as would a collaborative process of uncovering pain points within their community and communicating their perspective (in their own words) on a medication’s ability to solve those problems.

WEGO Health solicited open-ended answers on this topic because we really want to understand what patients feel makes a good branded partnership. Here is what a few respondents had to say.

Patient Influencer Pharma Partnership

For those on the fence or against these types of partnerships, many responses went back to their fears of medication being a deeply personal decision, one that belongs to the patient and their care team.

At WEGO Health, we understand this is not a simple feat. Having partnered on branded campaigns with pharma, we know the intricacies of the MLR process and the sensitivities of the patient community. Standing in the middle with outstretched arms, we strive to strike the balance so that both sides see the value and reap the benefits.

Execution with Patient Influencers

When a brand is considering a partnership and they have a patient influencer on board, what are the top considerations for the brand to get it right?

Considerations for Branded Patient Influencer Marketing

Breaking these components down, there was an interesting theme that authenticity and transparency trump engagement and influence. In the world of mega influencers, many marketers look at reach as the number one criteria of hiring an influencer for their campaigns. But in the pharmaceutical and healthcare space, this is a very different landscape. Patients find it most critical that the person sharing the information is genuine and real, living with the condition, as opposed to holding stock in their number of followers.

Branded Partnerships Patient Influencers and Pharmaceutical Companies

Patient Influencer Partnership Preferences

Because many pharma brands are accustomed to their celebrity endorsers being exclusive to their brand, they often struggle to understand why patient influencers are reluctant to exclusivity.

To dig in on this topic, we asked our respondents to weigh in. Our research confirms that patient influencers are reluctant to exclusivity, with 1 in 3 respondents answering they would “never” consider exclusivity. Over half, however, are okay with exclusivity, but only for a finite amount of time.

But why? Patients want to remain unbiased. As their conditions change, so often do the therapies that they take. They do not want to be held to agreements that do not allow them to mention, explore or share new medications and therapies that someday they may ultimately end up needing and succeeding with. Patients also like to be able to speak freely, and promoting flat tummy tea doesn’t hold the same weight as a potentially life-changing medication. While they are happy to share their positive experiences with their community, they understand the value in remaining open. Every person has a different body chemistry and each medication or therapy, therefore, is not a one-size-fits-all approach.

Patient Influencer Branded Partnerships with Pharma Companies

Lastly, when looking into the future and what 2021 may bring, it wasn’t surprising that the majority of patients are not ready to travel. This survey was conducted in October 2020 when COVID-19 numbers were lower but even then, 3 in 4 respondents said they would not travel until cases decrease or there are proven treatments or a vaccine. But this doesn’t mean that partnerships need to be put on the back burner. Patient influencers are highly skilled at creating authentic content from within the walls of their own homes, as well as working virtually with pharma brands and companies like WEGO Health.

Patient Influencer Example High Engagement

Overall, the takeaways from our landscape research indicate that patients as influencers for brands will help build trust more so than lifestyle influencers, are more likely to increase target patient audience action, and that patients are receptive to branded marketing and ready to partner with pharma to make it happen. If you’d like to explore the power of a patient influencer campaign for your brand, we invite you to reach out to our team and explore the possibilities!

At-Home Heroes: Celebrating National Family Caregiver Awareness Month

While 2020 has been marred by the imprint COVID-19 has left in its wake, it has also been a year of raising up those on the front lines fighting this devastating pandemic. We’re thanking first responders and medical professionals in a way we never have before, recognizing the sacrifices they all make daily to help ensure we all stay healthy and well. Essential Workers’ praises are rightly being sung, but there’s one group of people who deserve heroic accolades – especially this year – for whom the silence and isolation have been deafening and discouraging: the Caregiver.

November is National Family Caregiver Awareness Month and WEGO Health wants to support this cause and shine the spotlight on all of the incredible people who freely and selflessly give all of themselves to care for their loved ones with chronic illnesses or disabilities. They are superheroes hiding in plain sight, giving 110% of what most of us could fathom each and every day.

Continue reading “At-Home Heroes: Celebrating National Family Caregiver Awareness Month”

Patient Leader + Thought Leader Conversations, Part 1: The State of Patient Advocacy

MarlaJan Wexler is a leader among Patient Leaders, sharing her very real and often hilariously profane survivor story as Luck Fupus. In her words, Luck Fupus is about “the girl, the nurse, the patient, the part-time superhero… tales of life with lupus, congenital heart disease, fake boobs, and an out-of-order baby maker.” We can’t imagine anyone better to kick off WEGO Health’s series of Thought Leader interviews – where top Patient Leaders will interview industry experts.

MarlaJan’s inaugural Thought Leader interview is with WEGO Health’s founder and CEO, Jack Barrette, weighing in on the effect of the pandemic on Patient Leaders and the evolution of patient advocacy.

If you’re a Patient Leader with an idea for a Thought Leader interview or a Thought Leader ready to be heard, let us know here.

MarlaJan: How has the pandemic affected the process of patient centricity and engagement?

Jack: In some ways, the pandemic shut down of HCP offices to rep visits has helped to focus industry attention back on patients in general. At WEGO Health, we’re seeing innovative companies thinking hard about how to help patients transition to virtual care, for example, which means more collaboration with patient community leaders to understand what that journey looks like. Pandemic nightmares like “it’s dangerous to go to your doctor” have caused patients, HCPs, and payors to get creative—together.

MarlaJan: How has it affected patient advocacy, in either communication with companies or in access to providers/medications/devices?

Jack: Slamming the door on in-person events has really hurt; some advocacy organizations rely on their annual conference or fundraiser, and opportunities for patients to spend quality time with companies and providers is invaluable. But the silver lining has been the democratizing of so many events that were limited to who could physically travel or who could afford it – now everyone is on the same work-from-home playing field, and for most patient advocates, that’s home-field advantage.
At the risk of cheerleading a global disaster, WEGO Health’s been seeing a really positive surge in companies and providers using web meetings to have more frequent, more collaborative conversations with patient influencers and advocates. Hosting five Patient Influencers in person for a day takes months of planning; hosting the same five on Zoom for an hour can happen six times during those months at a fraction of the cost.

MarlaJan: What has happened over the past few years to advance patient advocacy efforts?

Jack: There has been a movement—and I’m proud to say WEGO Health has been a part of it—to line up patient advocates as peers with HCPs and industry. More than ever before, we’re putting patient advocates at the table as accountable contributors and partners – recognizing their expertise and compensating them for real work. And healthcare companies are seeing the real impact of working side-by-side with patient advocates: better-designed trials getting completed more quickly, patient access issues getting tackled, even marketing becoming more authentic and effective with the help of Patient Influencers. That means patients-as-peers isn’t a fad; it’s the new way.

MarlaJan: Which companies are doing a good job of interacting with patient organizations, and how?

Jack: WEGO Health works a lot with life sciences companies – pharma companies – and there’s tremendous variability. There are a LOT of great things happening, so here are just two examples.

At GSK, their lupus team is deeply committed to that patient community; they work with Patient Influencers to support the whole life of a lupus patient, not just their relationship with a medication. The GSK team spends time talking with Patient Influencers and designs programs with them – a recent standout example is the #WhyITattoo campaign to raise lupus awareness.
Alnylam is a standout in the rare disease space; as a biotech, they’ve built a remarkable patient-centric culture and helped to grow advocacy around porphyria, for example, a condition where patients are just beginning to find each other. A top Alnylam exec was on a panel with me recently, and he told the story of their sales reps delivering medication to patients who could not leave their homes during the pandemic – that job is nowhere in their compensation plan. Still, as a company, they think of the patient first.

MarlaJan: What needs to be done to improve patient advocacy efforts, either on the organization side or the healthcare company side?

Jack: I frequently counsel advocates to share their stories – and the value of working with them. How can your credentials of fighting chronic illness and leading a community of patients help solve real problems for your partners? Don’t be so damned humble!
One consistent piece of advice for companies we hear from WEGO Health Patient Leaders is to avoid the wham-bam-thank-you-advocate approach. If you ask a group of Patient Influencers how to best educate their communities, don’t just get your answers and never call back! The companies that follow up and say “we did this with what your group said” or even “we couldn’t do that because of legal, but we heard you” – those companies are building real trust.

MarlaJan: Describe some of the best moments you have experienced with moving the needle forward in advocacy.

Jack: I have the best job in the world because I get to be inspired by patient advocates daily. There are some life-changers, like our live WEGO Health Awards presentations to 16 of the top Patient Leaders as chosen by their peers and industry judges – I love seeing the patients-are-why-we’re-here needle not just flicker, but get buried like a sound meter at a Guns n’ Roses concert when top healthcare industry presenters can’t hold back tears of gratitude and admiration as they hug the winners. “This is why I do this, why I am in healthcare,” they say.

But right now—this moment—is a best moment for me, too, because MarlaJan Wexler, a powerhouse patient advocate, is leading this very interview, and you’re scheduled to lead an industry panel on this topic. Ten years ago, a patient even attending an industry conference would have been “inappropriate;” 5 years ago, I might have fought to get MarlaJan onto a panel; today, you’re the moderator, you’re the leader, and goddammit that makes my year.

Itching for Empathy

It was a humid, ninety-degree Summer day in Indiana. Coach blows the whistle to end our conditioning training outdoors in the scorching heat. I was playing Division-1 collegiate soccer and those hot day sprints were brutal. As if being sore, tired, hot, and blistered weren’t enough, I had the honor of tacking on eczema, atopic dermatitis, and asthma as the cherries on top. Mandatory ice baths followed daily practice, which I dreaded — not because I minded the freezing cold, but because I was humiliated by the rashes all over my arms and legs.

Atopic dermatitis flare-ups caused my skin to be insanely itchy, dry, and red. Throw in the heat and sweat, and you get the most perfectly uncomfortable burn. Ever felt sandpaper? It’s like that on your skin, then add an itching fire to it. I’ve had AD my entire life, so I’m used to it, but I will never forget those days when I was severely insecure about my skin.

Through my lifelong journey with AD and Asthma, I’ve learned the importance of empathy for the patient from the healthcare industry — especially when it comes to advertising content. Authenticity is key.

More than 40% of consumers say that information found via social media affects the way they deal with their health. I am a part of that 40%.

Just the other week, I saw an ad on Facebook with a beautiful, famous, rashless person smiling comfortably, posing for a treatment option. It’s a stark contrast to the real-life patient experiences I shared above. It’s not reality, it’s not relatable, and it’s an insulting fairytale AD patients can only dream of.

Seeing that made me feel uncomfortable. I don’t always have a break out, but I know this condition isn’t sunshine, rainbows, and glamorous product photoshoots. The reality is that it’s painful, frustrating, and frankly sometimes embarrassing. When asked about that treatment, I don’t recommend it and I tell people how I feel. Not just because of that ad, but it does play a substantial part and certainly didn’t help me favor the brand more than before. A Google image search provides a more honest, authentic look at AD than the ad. That’s the core issue we need to fix — and the solution is empathy and authenticity.

What’s Empathy Got To Do With It?

According to Karla McLarne, author of “The Art of Empathy”, empathy is a “social and emotional skill that helps us feel and understand the emotions, circumstances, intentions, thoughts, and needs of others, such that we can offer sensitive, perceptive, and appropriate communication and support”.

As an AD and asthma patient, I can’t stress enough the importance of the right content messaging. After those brutally hot soccer practices in college, I wanted to put a snowsuit on to hide my flare-ups to refrain from itching. Then imagine I open Instagram and see a happy, rashless, well-known celebrity promoting an AD product — someone I’ve never heard speak about this condition before. Celebs have teams of make-up artists to cover any outbreaks, concierge doctors, and not to mention money most people only dream of. I don’t relate to that ad. It doesn’t make me feel good. It is not authentic. I just don’t trust it.

On the contrary, if I saw an ad that had a patient like me talking about their struggles with AD and how they found a product that works for them — that’s something I can relate to. Something that activates my empathy. Something I can trust. Because I know what that feels like.

Why Do People Connect with Authentic Content?

I originally had the title above as “Why Do Patients Connect with Authentic Content?”, but I caught myself. Throughout my own patient journey and working in the healthcare space on both the sales and patient sides, I have learned how important it is to make sure these two terms are congruent. Patients are people; human beings with human emotions. Whether at the doctor’s office or on social media, people want to be treated as humans, not lab rats or money makers.

Fractl, a content marketing agency, studied 345 of their campaigns and found that emotional, empathetic content drives better results. “Campaigns that received more than 20,000 social shares were eight times more likely to include a strong emotional hook than campaigns that received fewer than 1,000 shares.” The study also found that ads promoting positive feelings are the most successful. Think about it this way – if you’re happy and excited, you tend to want to share that feeling. The feeling resonates, and you want others to feel that, too. This is where empathy comes into play.

According to behavioral scientist, Susan Weiinshneck, Ph.D, all decisions are based on emotions. “You should just assume that all decisions involve emotions. Rather than just making logical arguments to persuade, you are more likely to persuade people to take action if you understand how they are feeling about the decision and feed their feeling.”

For example, if Suzie, a breast cancer patient, feels insecure after having a mastectomy then sees an ad with messaging encouraging her to feel secure and embrace her “new beautiful,” the empathetic messaging resonates and she is more likely to be interested in the product or service.

Why Now?

MM+M reported earlier this year that 42% of healthcare marketers increased social media ad spend targeting consumers. If marketers want a more significant ROI on their increasing budgets, empathetic and authentic messaging is an imperative.

According to the study, How Many Ads Do We See a Day in 2020?, “the average person is now estimated to encounter between 6,000 to 10,000 ads every single day.” That is an insane amount of content.

As if, collectively, our mental health isn’t already in jeopardy as a result of COVID-19, we are also overstimulated with ads competing for our attention and our dollar. From a mental health perspective, empathy in advertising would provide some relief to help with feelings of aloneness. From a strategic standpoint, empathetic advertising is more likely to catch our eyes, impact our decisions, and ultimately earn that dollar.

Jonah Berger, renowned social influence expert and Wharton school professor, has researched this topic in great depth. According to Berger, “In order to stand out, you’ve got to give people unique content, which is difficult to do when most people are turned off by traditional ads.” Emotional marketing and empathy in advertising is demonstrably not the norm and a way for brands to stand out.

How to Emotionally Support Your Content

I wish I had a secret sauce or magical plan to accomplish this, but the answer is relatively simple: care and make it clear. Genuinely care about the target audience. Show empathy in your content. What do they need? How can you help? What can you do for them?

Emotional marketing is the tactic to accomplish this. Hubspot defines emotional marketing as, “marketing and advertising efforts that primarily use emotion to make your audience notice, remember, share, and buy. Emotional marketing typically taps into a singular emotion, like happiness, sadness, anger, or fear, to elicit a consumer response.”

Jonah Berger outlines how emotional marketing works using the acronym STEPPS. STEPPS, broken down at a basic level, looks like this:
Social Currency- as discussed above, if people see things they like, they want to share. They want to look and feel valued and knowledgeable to those around them.
Triggers – the factors reminding patients to think about your product.
Emotion – human decision is driven by emotions, and people “are connected to feelings rather than function”
Public eye – make sure ads are being seen often, and to the right audience
Practical Value – connect emotionally with patients, but also be sure the product is valuable enough to talk about
Stories – humans connect with humans through many outlets, but stories are extraordinarily personal and able to truly connect us with each other and with a product

Remember the experience I shared in the beginning about an ad I saw that rubbed me the wrong way? That is a prime example of where emotional marketing was missed entirely.

So, what does an emotional marketing content piece look like? Let’s look at the 2018 Pharma Choice Professional Campaign Bronze Winner Biolumina and Novartis Pharmaceuticals. Their campaign for Kisqali nailed it.
Social Currency – Everyone wants to feel confident, beautiful and accepted. This ad for a brand for a rare breast cancer condition shows that these women are still beautiful.
Triggers – The unusual personification of chinaware and blue flowers triggers a powerful visual sensory reaction associated with Kisqali.
Emotion – Fragility, hope, and empathy are portrayed.
Public eye – The content placement was spot on.
Practical Value – Talks about “what does she need?” It makes women feel heard and cared for.
Stories – Without literally telling a story, there is still a compelling one here. The woman’s broken pieces are beautiful.

Hats off to you, Kisqali. This is an excellent example of touching on all the STEPPS for emotional advertising.

So where should healthcare marketers start? Working directly with patients to gather insights is the best way to understand their needs. From there, co-creating content with patients ensures the message hits the mark, and it’s also being relayed by an authentic voice that your target consumer trusts and relates to. According to WEGO Health behavioral intent survey data, nearly 9 in 10 patients would ask their doctor about a medication or treatment if they saw another patient talking about it online. For pharma and healthcare marketers, working directly with patients is the best way to ensure both the message and the method of communication will resonate with your brand’s target audience, therefore increasing the likelihood of consumer action.

Scratch the Itch

If you have AD, don’t take that advice literally…because, ouch! But for the rest of us, let’s start incorporating human emotion and empathy into advertising content. Research conducted by the Advertising Research Foundation concluded that “likeability” is the measure most predictive of whether an advertisement will increase a brand’s sales.

We know that emotional resonance increases consumer engagement and the likelihood to share. This implies likeability. When consumers can associate likeable content with a brand, it’s a practice in increasing brand trust, as well. When consumers like and trust a brand, they continue to engage over time. The key is to tap into empathy. Let’s ask patients what they need and with what they connect.

The next time you start thinking about content, marketing, and advertising, remember first to honor that patients are people – people like me who may sometimes be embarrassed by their AD breakouts, people who can’t relate to celebrities, people who feel human emotions just looking for more authenticity in the world.

2020 Guide to Patient Culture on Social Media

Patient culture will bloom wherever it’s planted. It started on message boards and trickled into Facebook Groups, it spread across twitter and broke through your Instagram feed, it wove it’s way through Reddit threads and has even erupted across TikTok.

Every platform has a purpose, a mission, a community shouting to be heard in 120 characters or less, in impassioned arguments in comment boxes and even through interpretive dances. Patients are the most pervasive species of influencers– not because they want the clout or the clicks– but because their very lives depend on the awareness they spread.

There is so much more that goes into the patient culture on social media than just support groups or complaining about symptoms. Culture can include inspiration, advice, calls to action on a legislative level, personal testimonies, the sharing of breaking news and research, the celebration of survivors and memorializing those who have passed. It can include the discussion and creation of guidelines for how an entire community of patients wants to be represented to the mainstream world. It can spur a collective sense of empowerment that leads patients to demand respect and communication in the exam room and maximum transparency at the pharmacy.

It can be a collection of stories that represents an entire group’s common experiences: the prejudices and injustices they face.

But every platform spins this narrative differently and it’s important to know where to look for the right information and to understand what it is you’re stumbling upon when you get there.

Let’s break down how the four top social media platforms represent patient cultures through their mediums and how you can be a collaborative part of these conversations.

Reddit, also known as the front page of the internet, is an American social news aggregation, web content rating, and discussion platform. Registered members submit links or original content to the site which are then voted up or voted down by other members.

How Do Patients Utilize It?

Reddit’s algorithm brings the best posts and comments to peak visibility for browsing users. So if a post has a lot of positive engagement, it’s pulled to the forefront of each subreddit. Sub-reddits are how each topic is divided — and the patient community has plenty!

From R/chronicillness for those with questions about coping with life with a chronic condition to R/tryingtoconcieve for those struggling with infertility to even R/AskDocs for patients looking to anonymously seek out medical advice — if it’s being discussed by patients, it’s being discussed on Reddit.

What puts Reddit at the top of the list for many patients seeking advice? The promise of total anonymity. There’s no need to set up a profile or give your full name. Users can sign up with just an email address and choose a username unrelated to their real identity. This allows for some of the most open and raw conversations possible.

The Most Popular Patient Content:

Reddit thrives on weird and fascinating, so while it certainly has a place for verified research articles and discussion on medical breakthroughs — the most hyped patient communities are ones with first-person narratives about specific problems that let users run wild with their responses. Patients peek in to get answers to their own questions, but also to explore threads about symptoms and conditions related to their own and that feed on their need to understand what might happen to them down the line, based on the experiences of similar patients.

Putting aside the politics and the excessive use of caps lock by the less than tech-savvy of its users, Facebook is still the number one platform for patient-to-patient advice in the question and answer format. It’s a place for advocacy, fundraising, advice, support, and journey updates.

How do Patients Utilize It?

Despite privacy concerns, the main use of Facebook for patients continues to be the access to private, hidden, and semi-public groups where patients can share advice, treatment reviews, and doctor recommendations by condition and complaint. In 2019, WEGO Health surveyed more than 400 patients and found that 98% still use Facebook, 94% are part of a health-related Facebook group, and only 3% have deleted their accounts because of privacy concerns.

It’s here that patients feel comfortable sharing a variety of personal and specific medical questions. It’s an ideal environment for seeking advice with easy back-and-forth from multiple viewpoints, where patients can demand source material for backup opinions and view indexed conversations.

It is not a productive space for patient leaders who want to build their brands. The most active patient users are the newly diagnosed and those with conditions they feel are too intimate to discuss openly on other platforms.

Facebook is also a useful place for patients to share fundraisers for medical care with plenty of easy to share features that allow for maximum visibility to friends, family and supporters who care.

The Most Popular Content:

Private support groups (or the newly designed health support groups) offer just enough privacy to allow users to share and connect in meaningful ways. There is no one condition area that thrives over another. Patients can find support for everything from cancer to rare genetic mutations to groups that specifically discuss one treatment

Instagram may very well be responsible for creating the idea that patients can be influencers in their own right. The social giant lets patients curate their journey as an expert through vivid photographs, blog-length captions, and quick thoughts.

How do Patients Utilize It?

This is the platform for patients to showcase their expertise and experience– micro-blogging on different topics from medication to life advice to coping skills. It’s a one-stop-shop for understanding the breadth of a patient’s following and engagement. If healthcare companies and sponsors want to understand who is the community’s social stakeholder, an Instagram profile serves as that patient’s calling card, resume, and collection of testimonials.

It’s most useful for giving one-way advice, versus the collaborative spirit of other platforms. You won’t struggle to find your tribe on Instagram with their hashtag system. You can also view who public accounts are following and their suggested follow feature is an advanced algorithm that won’t let you down if you’re looking for content creators that match your interests and location.

The Most Popular Content:

Instagram is broken down into two main parts: the grid and the stories.

Since Instagram implemented its stories feature in August 2016, the stalker functionality has been set ablaze on the platform. Patients and their communities love it because not only do they get to focus their feeds on advocacy for their conditions, but they also get to share how multi-dimensional their lives are outside of their conditions. This lends a more human element to their content and diluting the in-your-face awareness campaigns with personable, easy to follow content.

Patients seek out stories for authenticity — something that can be hard to generate in their feed posts. Feed posts are usually carefully planned and executed by all influencers — even patients. These posts make a statement without having to participate in community drama. They allow one-on-one feedback in the form of direct messaging and moderated comments. They help patient leaders share stories and advice over time, building a personal portfolio of their expertise and showcasing their opinions, experiences, and life lessons.

The new kid on the block is already 500 million users strong, and for patients of all kinds, it’s not just about crop tops and thirst traps. The patient community is (metaphorically) healthy and thriving on this music-based app. Despite the threat of a ban (now moot) and the public perception that this app is exclusively populated by 14-year-old girls, TikTok actually has fast-growing patient populations in everything from the deaf and hard-of-hearing scene to the cancer community to the rare disease content creators.

How do Patients Utilize It?

What do we do when we can’t cry about it? We laugh. We dance through it. We make dark jokes and we share information so we can step out of the loneliness and into a more aware world. That’s exactly the route patients are taking on TikTok to commiserate and educate. There’s no limit to the creativity of TikTok creators, and as you scroll through your auto-populated For You Page you’ll discover everything from patients sharing clips about their hardships with mental illness to teaching American Sign Language with voice-overs from Keeping up with the Kardashians.

Creators use popular trending sounds, editing techniques, and inside jokes to make their unique content about disease management relatable to other patients and to the general community. The addictive technology behind TikTok means that you can scroll indefinitely, always finding content that relates to the videos you previously enjoyed watching.

The Most Popular Content:

The wonder of TikTok means that popularity is subjective. Based on your interest (and in a patient’s case– their diagnosis) you’ll be directed to content that best fits your viewing needs. Is it slightly creepy? Yes. Is it effective? Absolutely. If you like a video about an obscure rare diagnosis, you’ll be redirected to twenty more clips about that diagnosis. Careful what you allow to play in its entirety or you could find yourself in a black hole of content you hadn’t anticipated engaging in.

As for the trends in the patient community, there are plenty. But patients often use the app’s evolving dances, sound clips, and transitions to tell personal stories, share facts about their unique conditions, or make relatable comedy out of what can seem impossible to open dialogue about on other platforms.

With everything that’s happening on social media right now, it’s easy to forget that it can be a lifeline for some patients who rely on it for support, comfort, and camaraderie during a health crisis. It’s also a place for creativity to thrive and for awareness and compassion to gain new footing.

Which platforms do you think will be the center for patient culture in 2021?

SURVEY: Patient Perspectives on Digital Health Adoption 2020

2020 has been a year of the unexpected, to say the least. Amidst all of the upheaval and tumult, perhaps one of the most unexpected but welcome changes has been the rapid acceleration of digital health adoption for both pharma and patients. The shift from analog to digital healthcare was important before, but the arrival of COVID-19 quickly thrust it forward to an imperative.

The COVID-19 crisis placed many chronically ill patients into an extremely vulnerable position. Meticulously planned out care routines were interrupted and access to the resources they can’t live without became an unknown. The world of healthcare needed to respond, and patients needed to be ready to embrace the world of telehealth, digital therapies, and data sharing with open arms.

With lives and the health of the global economy at stake, the healthcare community has answered the call for change. From webinars to telemedicine to free home delivery for prescriptions and new adherence technologies, more resources than ever are available to patients. But there’s still work to do.

According to our research, patients are ready to embrace it all, data sharing included. But at what price? Brands and other healthcare companies are also left to wonder which resources do patients find the most value in, and what’s the best way to encourage them to adopt new digital health resources?

Defining the Need

Nearly 3 in 4 Patient Leaders, the most activated patients in their condition communities, have asked their healthcare provider 2+ times about a new drug or treatment in the last year. More than 9 in 10 have asked at least once. This data is a strong indication of opportunity in the digital health space as patients are currently dissatisfied with what’s available to them and looking for new options and alternatives.

While the above question relates to both drugs and therapies currently available, another point reemphasizes patient vexation over digital health efforts specifically. When asked to rate pharma’s overall digital health efforts on a scale from 1 to 10, an average of 5.7 weighed out. How does that translate? It’s not terrible, but it’s certainly not great, especially considering we’re living in The Information Age. The world as we know it is characterized by an economy primarily based upon information technology. If now’s not the time to innovate, then when?

Providing Value

Adherence is a known headache for providers, and it clearly is for patients, too. Of the 125 Patient Leaders we surveyed, 40% state digital medication reminders and tools for management would provide the most value for them and their communities. We all have 100 things nagging for our attention at any given moment, so remembering our daily dose of medication or prescribed therapy sometimes falls to the back burner, and even off the cart some days.

From a digital perspective, the age of technology we live in could not be more ripe with opportunity to create new tools to assist with medication management and reminders. According to the latest Pew research, 81% of Americans own smartphones. The numbers are even higher when you look at the 18-29 and 30-49 age brackets (96% and 92%, respectively). Considering these statistics, the smartphone in nearly everyone’s pocket could be key to developing these highly-desired digital initiatives. Everything from mobile apps to occasional text reminders are possibilities with HIPPA compliance and patient opt-ins. Technologies such as RELAXaHEAD for migraine sufferers and a new app from Kaia Health for back pain are earning notoriety in the industry and a great source of inspiration.

Health data ownership has been a long, heated debate. The question looms whether patients would be willing to share personal health data to receive more relevant and personalized treatment information and resources, like that which they’d receive from the digital tools they seek.

Getting Personal

Speaking on behalf of both themselves and their condition communities, the Patient Leaders we surveyed overwhelmingly report that patients would be open to sharing personal health data. More than 9 in 10 patients would safely share their information so that they can best care for themselves and manage their condition. However, what they’re willing to share depends on what they will be receiving.

The Data Barter

When it comes to medication management, patients are least likely to share personal health information. Nearly 1 in 3 patients, however, would likely share information for personally relevant educational resources, and more than a quarter would share data for clinical research and disease management resources.

Effective Engagement

There are certainly brands that are more ahead of the game than others, and even companies that have created the technologies and now need to focus on patient uptake and engagement. According to our survey of Patient Leaders, 1 in 3 say the best strategy to effectively engage patients with new digital health options is to work directly with HCPs. Having physicians prescribe the technology directly will make patients aware of the innovation while also backing it with an informed voice that patients trust when it comes to medications and treatments.

The second, slightly more creative way to effectively engage patients is to enlist trusted Patient Leaders to provide “help desk” support. Patient Leaders possess the trust of their communities and followers. Recruiting them to learn the technology and provide assistance to other patients, brands effectively boosts perception and adoption among target communities. It’s important to note that you can’t purchase Patient Leader opinions or endorsements. They are fiercely protective of those they represent and only endorse treatments they believe in. Truly effective technologies designed with the patient in mind will succeed best with this strategy. Including patients from the idea’s inception through development and to market is a winning strategy to ensure digital health solutions prosper and thrive.

Smart Investing

TV ads or page 1 of Google won’t earn patient trust in products. With a tie for first at 27.5%, patients overwhelmingly feel that pharma companies should invest their money to build consumer trust through consumer health websites and patient advocacy organizations. TV advertising is ranked dead last, with only 3.6% of patients reporting it as a worthy investment.

The Time is Now

2020 has forced every industry to look at new and novel ways to digitize and engage. Pharma and healthcare are no exception. The data proves that patients are ready and willing to provide personal health data to facilitate further the rapid shift we’re all experiencing — as long as it’s done right.

Invest wisely, leverage trusted patient relationships, recruit patients as partners for insights and engagement, and prepare to prosper. There has never been a better nor more important, time to embrace the shift from analog to digital. Patient partnerships and insights are the keys to getting you there, and WEGO Health can help facilitate that. Let’s keep the conversation about creating patient-centric digital health options going.

The Patient Perspective: Patient Influencers and The Impact of Authenticity

As any patient will tell you, there’s nothing like out of touch, unsolicited medical advice from companies to get them to slam the door in your face. When you’re sick and you’re trying to decide how to manage it — there’s simply nothing more infuriating than a tone-deaf portrayal of your illness in a commercial or print ad to make you feel alone, misunderstood and unseen.

Just as we demanded that women stop smiling and frolicking in fields during tampon commercials, so too do we demand a realistic representation of patients telling us how to live and cope with different diseases.

Real people, not actors has become a tagline for authenticity in healthcare. As patient consumers, we’ve become conscious of how gratifying it feels to see our stories represented as they are truly experienced. As we become veterans of our diseases, it becomes our duty to light the way for others as they have lit the way for us.

So who do patients want to get their advice from outside the exam room?

Becoming An Advocate of Influence

Like many others, I became an accidental influencer when I started sharing my story through my blog. I was writing about my highs and lows, my hospitalizations, and helplessness as I fumbled my way through a new diagnosis. I talked about the mental olympics it takes to go from being told “this is how you’re going to treat your disease” to taking an active role in planning your treatment with your doctor. I talked about leaving a place of shame and self-consciousness and asserting my voice in the exam room.

I found myself blogging about how if the patient-doctor relationship was a two-way street, we might actually end up where we wanted to go.

Across the internet, my journey was mirrored by cancer patients, autoimmune patients, chronic pain patients–and so many others. It wasn’t long after I started my blog that I was nominated for a WEGO Health Award. A company that celebrated patient leaders and their contributions to awareness, advocacy, and innovation. I found an entire network of patients like me who were utilizing their social platforms to usher in a new era of support for each other.

We were different from the influencers hawking diet supplements and fashion accessories. We were setting the bar for humanizing healthcare and by sharing our reviews, tips, and honest revelations we were creating a new breed of trendsetters: the proactive patient.

In Sickness and in Social Media

When it comes to patient influencers, it’s not the images of airbrushed and toned models showcasing glittery packaging that comes to mind. Patients who follow other patients that they respect and admire are still thinking, I want what it is that they have. It’s just not always as obvious as new kicks or flashy gadgets. How do you showcase quality of life in a 30-second video or a 120 character status?

Often it’s a patient who’s able to say, “I did find support from my doctor when I came to them with my unmanageable symptoms” or “I found the right tools to help me explain to my family and friends how my disease is making life more complicated right now.” Or simply, “I’m not coping well right now, but I’m not ashamed.”

As it turns out, social media really can be the prescriber in how to live realistically with our disease — outside the scope of what our doctors can suggest for us. And I’m not talking about recommendations of literal supplements or diets, but an example of how real diseases progress in the real world. How they touch on our school, work, relationships, sex lives — how they influence our emotions and choices.

There is a bigger story being told in the captions of our fellow patient’s feeds than we have ever seen in the tagline of a magazine ad for our meds.

Social media can give us a matrix of examples for the difficult choices ahead. These stories can help us to understand our symptoms, explore treatment options, and find our footing in a new world of unanticipated personal responsibility.

Yes, we need our medical experts, and we need support, but we also need these influencers as pivotal allies in our journey.

For years they’ve been establishing their presence across Facebook, Instagram, and Twitter, transcending the role of support group leaders and becoming influencers for their condition.

And now? They’re ready to open their eyes and @’s to collaborations with pharma.

More than Money, Patient Influencers Make Change

It has not been an easy transition for pharma who is often handcuffed by the restraints of highly-regulated industry advertising standards to partner with patients across social media.

Unlike conventional influencers, patient influencers aren’t going to receive coupon codes for their audiences or free samples of medications to try.

The most valuable “get” from their work with pharma?

“A seat at the table,” says WEGO Health Patient Leader Network VP, Julie Croner. “Patient influencers are trying to make the hardships that patients deal with a little easier. If they work side-by-side with pharma, they have the opportunity for their voices, concerns, and ideas to be heard — and to be paid for it.”

Patients who are chosen for influencer opportunities are often paid not only for their social posts, but for their participation in insight groups, one-on-one conversations with pharmaceutical marketing firms, and survey participation.

They bring key concerns from their disease communities to a forum where pharmaceutical companies can make real change.

In return, influencers open their feeds to conversations about new treatment options.

The goal is to give patients the information they need to become advocates for their treatment plans. Influencer campaigns will aim to inspire patient-doctor conversations that have both parties coming to the table with ideas on how to improve quality of life.

This back and forth can spark a proactive patient towards successful treatment and stops them from being prescribed a one-for-all treatment plan.

When asked what action they would take when someone they consider influential shares information from a pharmaceutical company about a specific medication, 87% of consumers said they would ask a healthcare professional about the medication.

Contrary to popular belief, most patient influencers don’t have an ax to grind with pharmaceutical companies. By the time they become the ones to look to, they understand that disease management involves a need for partnerships with prescribers and prescriptions. Medication keeps patients alive and functional, and while no one is a fan of unwanted side-effects or unsuccessful treatment plans — rarely do we fall into the right solution without flexing the muscles of personal medical experimentation.

The Bridge Between Patients and Pharma

So how do patients go from sharing their stories on social to collaborating with pharma goliaths? How do they retain authenticity in their messaging while expanding their personal brands and social audience?

If they were searching for the bridge between the world of patient advocacy and pharmaceutical might, they wouldn’t need to look much further than the community of WEGO Health, a vast network of patient experts, opinion leaders, influencers, and advocates who are given opportunities to collaborate on a professional level with healthcare.

Patients paid attention when the company started recognizing advocates for their contributions through their annual WEGO Health Awards a decade ago. Now the company has grown to support patient leaders in their careers as social influencers by offering free online education, databases of engaged patient leaders to connect and collaborate with, and a gig marketplace where patients can find relevant paid opportunities related to their disease communities.

The company has been a strong proponent for patients getting paid for their contributions to healthcare marketing and will only broker partnerships between patients and pharma companies if the patient makes a profit from their experience and time.

Now, WEGO Health has launched Pharmaceutical Grade Influencer Marketing: a chance for patient leaders to take the next step in helping their dedicated social audiences make smart treatment choices.

The WEGO Health Pharmaceutical Grade Influencer Marketing product offers services that include influencer marketing, social media management, branding, and photo and video production. The company seeks out the top patient influencers across all disease communities and gives them the expert training they need to kick off a successful partnership, including training on adverse events, comment moderation, and content pre-screened by both parties before posting.

With sponsored posts being boosted by WEGO Health’s proprietary algorithm, patients receive a significant boost in views and follows to their social networks — a benefit that will help them reach new audiences and expand their professional careers as influencers.

The Patient Journey Will Always be Real

While other types of social influencers may grapple with the loss of authenticity as they build their personal brands, this is unlikely to be the case for patient leaders. For these social stars, health concerns are chronic and unlikely to be resolved by a high follower count.

We are all brought back to our vulnerabilities when dressed in a hospital gown, when at the mercy of a pre-operative countdown, when staring down two treatment options and looking outside ourselves for support and guidance.

All we have is the roadmaps of patients who have been there before us, and in particular, those who have been brave enough to post to their feeds about how finding their voice brought them closer to the quality of life we all strive for.

Our Plan to Help Fight Racial Injustice in America

WEGO Health recently shared with you our support for the #BlackLivesMatter movement and against racial injustice. As a platform dedicated to the amplification of often-unheard patient voices, we at WEGO Health recognize the importance of raising our own voice when we see injustices occurring across our country. WEGO Health stands with our Black audience, colleagues, and community members. Louder, we say again: Black Lives Matter.

We understand that words hold little weight without action to support them, so we want to share with you some of our plans to actively fight racism and support initiatives to continue the battle.

To start, WEGO Health has made substantial donations to both the NAACP Legal Defense Fund and BLKHLTH, with an additional dollar-for-dollar employee match program. We strongly recommend you check out these terrific organizations and show them your support as well.

Next, we will work actively to recognize health awareness days and months for conditions that disproportionately affect the black and minority communities. We’ll create content to support these efforts and educate our entire community about them, including resources on our WEGO Health Answers channels, beginning with Coronavirus Answers.

For our WEGO Health Awards program, we are actively collaborating with leaders from various communities and ethnicities, working to ensure a comprehensive representation of our network. While the WEGO Health Awards is a crowdsourced program and WEGO Health never intervenes nor has a hand in selecting the winners, we can ensure racial bias has no place in the judging process by promising that at least 30% of minority ethnicities comprise this year’s and all future judging panels. We encourage Network members to nominate Black and minority Patient Leaders to further establish a diverse representation of ethnicities. WEGO Health is committed to ensuring that the collective patient voice is heard.

Internally, each WEGO Health team member has been provided with resources and challenged to take specific, personal action against racial injustice each and every week – not just this week, but in the months and years ahead.

This is only the beginning. We are just getting started. We hope these actions work to address racism and racial injustice at their roots within each of our lives, the healthcare industry, and, ultimately, our country.