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.

Presenting the 9th Annual WEGO Health Awards Winners

Each day, there are thousands of patients and caregivers sharing their health stories, raising awareness, and inspiring others to keep fighting for their health. Unfortunately, too often their incredible impact goes unnoticed, which is precisely why we created the WEGO Health Awards. It’s our mission to empower the patient voice, and that includes shining a light on the great work these patient leaders are doing.

Even in our 9th year of the program, we continue to be in absolute awe of the effort, hope and change these patient leaders are creating. With over 13k nominations this year, we’re honored to celebrate more patient leaders than ever before. Across all platforms, channels and health conditions – this year’s nominees were truly in a league of their own.

Our judges had the near-impossible task of narrowing down all of these the nominees! For our first few rounds of judging, members of the online health community volunteer their time to sort through the +13k nominations to just 96 finalists. From there, our industry judges score each finalists to ultimately uncover the 16 WEGO Health Awards winners.

The Celebration Continues…

We may be closing out our virtual ceremony, but the fun is just beginning!

Each winner is entitled to $500 towards their advocacy mission, a seat on our compensated Patient Leader Advisory Board and the chance for industry exposure events over the next year.

Over the next year, we’ll be showcasing the work of all our finalists and collaborating closely with the winners. Stay tuned for more tips, tricks, and strategies from these top patient leaders. In the meantime, help us celebrate this year’s winners – follow them on social below and give them a shout for their achievements!

Congratulations to all WEGO Health Awards nominees!
Thank you for sharing your story.

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?

HLTH 2020: Pull Up a Chair for Patients at Your Table

Year after year, conference after conference, patients are left out of the conversations around their care. And while we’re far from where we need to be as an industry and healthcare system, more companies than ever are noticing the need to involve healthcare’s key stakeholder: patients. One of those companies, HLTH, is demonstrating their commitment to patients and ensuring they get a seat at the table by partnering and supporting the WEGO Health Awards for the second year in a row.

The WEGO Health Awards recognize and honor those making a difference in the online health community, providing an opportunity to thank and support the Patient Leaders who are working to build a more human-centered healthcare system.

In 2019, HLTH invited the WEGO Health Awards winners to attend the in-person HLTH event in Las Vegas and hosted a live WEGO Health Awards ceremony to celebrate their achievements. As patients and caregivers shared their stories, the industry professionals and other attendees were quickly reminded of their “why” and the importance of seeing patients as people, and more importantly, as partners. There wasn’t a dry eye in the audience.

This year, HLTH has stepped up and given patients an even bigger stage at the conference. Out of an abundance of caution for COVID-19, the 2020 event will be held virtually. HLTH has invited all 96 WEGO Health Awards finalists to attend the five-day virtual event and will help announce this year’s WEGO Health Awards winners during a virtual ceremony celebration.

To patients, the opportunity to participate in conversations at HLTH is invaluable. There are few other opportunities for them to attend sessions and weigh in with their perspective and condition expertise. The conversations about them now include them – and to patients, it means more than words. We then asked our finalists to weigh in on what they are most excited for with regard to attending HLTH. Here’s what some had to say:

Patient inclusion at events is important because you can’t have innovation without patient input. The big decisions in healthcare are all too often made by people who don’t live with illness, who don’t use the services, and who won’t be affected by the fallout of those decisions.Caz Homer
I am proud to be a patient leader at HLTH because the healthcare ecosystem needs to start paying attention to patients and caregivers. Likewise, patients and caregivers need to become active, informed players in the ecosystem. Kevin Freiert
One message I hope to convey at HLTH about patients is we are just as passionate about health as you are. Together we can make a difference. This is why we are all here to begin with – to create change. Effie Koliopoulos

Beyond giving patients the platform they well deserve, patient leaders also see HLTH as an opportunity to build trust between the industry and their communities.

I am most looking forward to meeting more industry professionals looking to create deeper connections between patients and healthcare leaders at HLTH. Damian Washington
It is only through honest partnership that we are able to accomplish some of our most powerful achievements. Trust collaborations are the only way forward.Lauren Deluca

You see, these individuals aren’t just patients – they are potential partners who know what their communities need and are eager to partner with healthcare companies who are ready to make a real impact in the patient experience.

My passion in life involves sharing ‘my seat at the table’ with as many other patients, worldwide, as possible. My experience and what I learn will become THEIRS too!Tiffany Westrich-Robertson
When partnering with patients, everyone wins. The patients are heard and get a solution to a problem, and industry is handed a gift in the form of identifying a true problem that their product or service could solve. Win-Win. Kathy Reagan
If healthcare partners with patients, together we can work towards a system where providers are more effective and patients are not only empowered, but informed and active participants in their care.” Alexa Chronister

And though this industry has begun to accept that brands must partner with patients for real results, the question remains, how do companies best partner with patients?

To partner with patients, you must first build relationships with patient communities, develop patient-led initiatives and partner with patients on awareness and advocacy campaigns.Kristal Kent
The best strategy to partner with patients? Be open-minded, welcoming and collaborative. Be willing to listen to their points of view, and engage in an open dialogue that is comfortable for everyone involved. Treating patients in a professional manner just like you would an employer/employee or a potential business partner would help, too. We deserve to be taken seriously as well for our time, efforts and feedback.Effie Koliopoulos
Reach out to real patient advocates who can speak on their own experiences and the experiences of their community.Justin Birckbichler

However, building trust doesn’t happen overnight. Like any relationship, the patient relationship requires action and evidence that your brand is serious and ready to not just listen, but to also put their feedback and ideas into action. As you engage with these Patient Leaders at HLTH, keep their words in mind:

There must be continuous patient dialogue, and not a conversation held every three months. No gaps whatsoever. It is pertinent to empower patients to make them active partners in their healthcare.Grace B Charrier
The most powerful way to show patients your brand cares is to give them an opportunity to give feedback, listen, and act on what is discussed.William Yank
The best way to build patient trust in your brand is to put real people in the campaigns. Patients who are living with the issues that your brand is all about can do more in the way of trust.Suzanne Stewart

If you encounter a patient leader at HLTH, meet them with gratitude and compassion. These leaders are excited and ready to share insights, experiences, and ideas on how all sectors of health can work together to truly achieve the optimal future of healthcare. Embrace the conversations with open arms and discover the change the patient perspective can bring.

Throughout the next few weeks, we’ll be sharing more of the best ways to partner with patients, why patient collaboration is so powerful, and how brands can truly build trust with patients – all directly from the WEGO Health Awards finalists.

Follow along with the #HLTH2020 and #WEGOHealthAwards hashtags to hear these real patient insights from those leading patient communities.

And be sure to connect with the WEGO Health Awards finalists on social – these are the leading patient influencers of the online health community and if you’re part of healthcare, you need to be listening.

Click here to learn more about HLTH and the virtual agenda. If you’d like to attend the WEGO Health Awards ceremony, click here.

Announcing the 9th Annual WEGO Health Awards Finalists

There are thousands of patients and caregivers sharing their stories, raising awareness, and guiding others through their own patient journey. Their endless work and energy to ensure no patient feels alone or lost is admirable and worthy of recognition. At WEGO Health, we believe these individuals are the key to solving healthcare’s biggest challenges and they deserved to be celebrated for their immense impact on the patient journey.

This is precisely why we created the WEGO Health Awards; to celebrate the patient leaders who are leading the online health community.

Year after year, we are truly blown away by the nominees and this year is certainly no different. We could not be more honored to celebrate these patient leaders across all conditions areas, platforms, and countries. With over 13,000 nominations, our 9th annual WEGO Health Awards season has been the biggest celebration yet.

We urge you to check out this year’s nominees, and you’ll quickly see the passion and power of these patient leaders. We hope this year’s nominees feel proud and validated that their work is making an impact. We truly thank each and every single one of you for your dedication to improving the patient experience and for being a shining light in your community. We are so very honored to celebrate your achievements!

Narrowing Down the Finalists

The three most endorsed nominees in each award category automatically become finalists. Three additional finalists are selected through multiple rounds of judging by WEGO Health community members. Nominees are reviewed and scored based on their fit for the award category, their uses of social media, and their focus on sharing information and fostering engagement.

Selecting the Winners

Starting Friday, our 96 WEGO Health Awards finalists will be reviewed and scored by our Finalist Judging Panel, comprised of industry professionals and experts, to ultimately uncover the sixteen 9th Annual WEGO Health Awards winners! Winners will be announced during our virtual ceremony, in partnership with HLTH, on October 15th at 7pm ET via a Facebook Premiere event on the WEGO Health Facebook page.

Finalists & Winners Will Receive…

Thanks to HLTH’s commitment to ensuring the patient voice is included and part of the conversation, HLTH is offering free passes to all WEGO Health Awards finalists and winners to the industry’s biggest conference on October 12-16th. Many of the conversations that take place here shape the future of the health space, so we are pleased to share that 96 patient leaders will be part of the discussion!

All finalists will also receive a WEGO Health prize pack in the mail.

Additionally, winners will receive:
• $500 prize to be used towards advocacy efforts or travel
• Compensated WEGO Health 2021 Patient Leader Advisory Board Seat (estimated cash value: $1500)
• Opportunity to be featured as a worlds’ top patient expert in HLTH’s patient-centered webinar series, as well as industry exposure opportunities throughout the year *Winners will get priority for speaking engagements and industry exposure events throughout 2021, depending on the state of COVID-19.

And now, the moment you’ve been waiting for…

Advocating for Another

LeAnna Headley

Our LANDing Crew

Mariana Arias

Elle Cole

Stephanie Hueston

Toni Mathieson

WEGO Health Award Description: Not all patient leaders are sharing their own patient journey. The Advocating for Another category is for the caregivers who tirelessly raise awareness to better the lives of loved ones. Though they themselves may not be sick, they are the caregivers of children, siblings, parents, significant others, or friends, who have an up-close-and-personal perspective that is invaluable. These individuals balance life as a caregiver, all while advocating on their loved one’s behalf – whether it be through blogging, social media or legislation.

Best in Show: Blog

Ella Hollis

Dr. Christina Hibbert

Meghan Smith


Cynthia Covert, The Disabled Diva

Caz (InvisiblyMe)

WEGO Health Award Description: Social media has its place in patient advocacy, but for many advocates, their blog persists as the heart of their advocacy. The Best in Show: Blog category is for the patient leaders who continue to publish new content or elaborate on relevant social posts through blogging. Aimed at sharing their story, raising awareness, or educating others, these are the health advocacy blogs we love to read!

Best in Show: Community/Forum

Megan King

Jeff Folloder

Kristal Kent

Jen Schwartz – Founder and CEO, Motherhood Understood

Go Shout Love

Estela Mata

WEGO Health Award Description: A diagnosis can be life-changing, but fortunately so can the support from an online community. The Best in Show: Community category celebrates the online communities or forums that create an inviting space for newcomers while maintaining a safe place that people have come to respect and rely on. These leaders have mastered managing, moderating, and engaging their communities all for the purpose of supporting others.

Best in Show: Facebook


Michelle Munt

The Invisible Hypothyroidism

Michelle Cole

Devin Garlit

IBD Warriors Support and Awareness

WEGO Health Award Description: Despite its recent controversies, Facebook prevails as one of the strongest online hubs for connection, conversation, and community amongst patients and caregivers. The Best in Show: Facebook category is for the patient advocates who lead in engaging Facebook groups or advocacy pages where people want to “Like”, comment, and connect!

Best in Show: Instagram

Pina Varnel

Brandy Haberer

Ellen Inouye


You Look Okay To Me

Nathan Todd

WEGO Health Award Description: It’s no secret Instagram has become the top platform for all things visual. The Best in Show: Instagram category is for the patient leaders curating thought-provoking images, engaging videos, entertaining Insta-stories, and helpful IGTV sessions aimed at sharing their story and supporting others. These are the advocacy accounts that fill your endless Instagram scroll with support, inspiration and community!

Best in Show: Podcast


Kathy Raegan Young – The FUMS Podcast

William Yank & Roni Bibring – The Illest.

Daniel Newman – The Talking Type 1

Michael Liben – Heart to Heart with Michael

Amy and Brittany – In Sixteen Years of Endometriosis

WEGO Health Award Description: More than ever, patient leaders are proving podcasts can be powerful! The Best in Show: Podcast category recognizes advocates taking their health stories to the airwaves to share their own experiences, explore community topics, or interview and learn from special guests. Whether educationally based, feel-good fun, or a way to meet new people, these are the advocacy podcasts you cannot stop listening to!

Best in Show: Twitter

Pina Varnel

Dani Donovan

Rene Brooks

Matthew Hodson

Agnes Nsofwa

Daniel Malito

WEGO Health Award Description: It’s not simple to create easily digestible thoughts in 280 characters or less, but there are some patient leaders who truly excel at it. The Best in Show: Twitter category is for the patient leaders making the most out of this character limit! Whether hosting Twitter Chats, providing snapshots of new information or sharing words of encouragement, these patient leaders embody the model of Twitter for #patientadvocacy.

Best in Show: Tik-Tok

William Yank

Paige Hennekam

Chloé Hayden

ASLSuzyQ- Suzy Stewart

Micah Thane

Jesi Stracham

WEGO Health Award Description: With the rise of TikTok, we couldn’t help but create a brand new category to recognize the patient leaders using TikTok for the greater good! The musical app has become a hotbed for awareness, giving creators the ability to take complicated topics and turn them into bite-sized units of education and entertainment. While this video platform is the home to lip-synching videos, viral dance moves and popular culture, many patient advocates are leveraging its features to make their advocacy interactive, entertaining, and plain old fun!

Best in Show: YouTube

Our LANDing Crew

ReBranding Autism

Damian Washington

You Look Okay To Me

Effie Koliopoulos


WEGO Health Award Description: The last five years have revealed that videos tend to be more engaging and more memorable than any other type of content out there. The Best in Show: YouTube category recognizes the patient leaders who are getting in front of the camera to share their story, vlog their daily lives or educate others about their cause. Though pressing record can be daunting for many of us, these patient leaders prove video is a powerful way to connect and communicate!

Best Kept Secret

LeAnna Headley

Dion Langley

The Wee Family

For the Breast of Us

Sarah Tompkins

Genny Jessee

WEGO Health Award Description: The internet is a vast place, making it nearly impossible to find all of the impactful content that exists. The Best Kept Secret category uncovers the hidden gems of the online health community that everyone should be following! Whether creating great content, providing endless support, or raising awareness for their cause, these patient leaders deserve the spotlight!

Best Team Performance

Zachary Valentine

Fight Like A Warrior

Lauren Deluca & the Chronic Illness Advocacy & Awareness Group

Lindsey Pacios & Team Cure

Fibromyalgia Care Society of America, Inc.

International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)

WEGO Health Award Description: The Best Team Performance category recognizes a team or group that takes their activism to new heights because of the assistance from one another. Whether it be a group that runs an online chat, a non-profit organization, or a caregiver and patient duo – this award celebrates those bringing a team effort to their advocacy!

Healthcare Collaborator

Trishna Bharadia

Jennifer Champy

Tori Geib

Grace B. Charrier

Michele Nadeem-Baker

Kevin Freiert

WEGO Health Award Description: Fortunately, more than ever the healthcare industry is seeing just how valuable patient leaders can be! Our Healthcare Collaborator category is for the advocates bridging the gaps between industry stakeholders and healthcare consumers. Whether speaking at conferences, consulting with healthcare companies, using their education or research to help make a change in the healthcare industry, or creating apps and products to fulfill needs in the current system, these patient leaders are impacting the healthcare landscape at large.

Hilarious Patient Leader

Dani Donovan

ReBranding Autism

Lisa Walters

Christine Olivo

A Ballsy Sense of Tumor – Justin Birckbichler

Kristen Hernandez

WEGO Health Award Description: Ever heard that laughter is the best medicine? The Hilarious Patient Leader category recognizes the patient advocates infusing a healthy dose of humor into their advocacy. They may be witty, dry or sharp. But one thing is clear, their use of humor makes even the toughest of topics more approachable and more enjoyable.

Lifetime Achievement

Trishna Bharadia

Kristal Kent

Cathy Chester

Carrie Kellenberger

Lauren Stiles, JD

Amanda Greene ~ LA Lupus Lady

WEGO Health Award Description: Some patient advocates are true stars who continue to shine and don’t fit into just one category. The Lifetime Achievement category is for the veteran patient leaders, who after years of advocacy achievements, stand as role models for the entire online health community. Let’s recognize the advocacy leaders that inspire all of us year after year!

Patient Leader Hero

Tiffany Kairos

Jennifer Champy

Kristin Anthony

Kevin Hines

Chisa Nosamiefan

Melodie Narain-Blackwell

WEGO Health Award Description: Sometimes, a leader’s advocacy work has the ability to truly change the lives of others. The Patient Leader Hero category celebrates those who go above and beyond for their communities and whose influence has truly made an impact. Their dedication is admirable and ignites a spark for change in everyone they meet. These patient leaders don’t need a cape to prove they are heroes!

Rookie of the Year

Arushi Lohiya

Naima D.

Anisha Gangotra

Trevor Maxwell

Cassie Pigg

Carley Gordon

WEGO Health Award Description: As anyone in advocacy knows, communities aren’t built overnight! Sharing your story and impacting a community takes time and patience, so let’s encourage those who are recently empowered as patient leaders. The Rookie of the Year category celebrates the advocates who may be new to the scene, but continue to show the utmost potential. This category is typically for patient leaders with 1-3 years’ experience.

Congratulations to all finalists and all nominees!

Regardless of the outcome, we hope you are all so proud! Your nomination means you have impacted the lives of others in your community and we are endlessly grateful for your contribution. Your work and voice truly have the power to change healthcare.

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.

What Patients Value Most

WEGO Health VP of Business Development, Laurel Netolicky, was recently asked by PM360 to weigh in on what patients value most, especially in the era of COVID-19. Touching on themes such as having a seat at the table to help shape DTC plans, trial design, and being a part of all phases of the product lifecycle, Laurel’s expertise lends some great insights to pharma marketers as we enter brand planning season. Check out this preview below, or click the link below to read the full article on with insights from Laurel and other industry leaders.

“Patients want to see authentic, trustworthy content from pharma companies. For ad campaigns to be successful, they should be built in partnership with real patients. Pharma companies already face an uphill battle being under strict regulatory constraints limiting their creative ability. We hear time and again from the members of our network of patient leaders that a pharma message must be transparent, useful for patients, and emotional to make an impact. The messaging must also be in a language that patients can understand.

In a recent survey, WEGO Health asked more than 300 patients from dozens of health conditions, “What are the top three types of information or support resources from a pharmaceutical company that are most valuable to chronic care patients?” The findings revealed that 98.5% want to learn more about help paying for medications followed by medication management at 82.5%. Yet, when asked how aware patients are of the financial support services provided by pharmaceutical companies, 61% shared that they are either “not at all aware” or “only somewhat aware” of these services.”

Read the full article.

WEGO Health Pauses Facebook Advertising

WEGO Health’s Patient Leader members rely on social media, and Facebook especially, for their work supporting their patient communities. A few months ago, we polled our members about Facebook’s privacy issues, and 93% felt their connection to their Facebook patient communities was too important to abandon.

But to keep those communities safe, Facebook needs to do better in its fight against hate speech, calls for violence, and misinformation. In support of the #stophateforprofit movement, WEGO Health will pause all paid advertising on Facebook effective July 1.

We will monitor the situation closely – if Facebook’s positive response allows an early end, we will resume advertising immediately. Otherwise, we will resume advertising on Facebook on August 1.

WEGO Health is proud to be an active supporter of the fight against racial injustice; we see this action as an expansion of that commitment. Any interruption in paid advertising is not good for our business, but at times like this, we must do what’s right.