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.