As I near the end of my job-hunting journey, I wanted to take a moment to talk about what I’ve learned about the culture, climate and truly innovative new programs in healthcare that are changing the way we communicate about patient rights, empowerment, and healthcare marketing.
I researched and interviewed with multiple companies and patient organizations over the last few weeks and learned a lot about what companies are looking for in terms of change-makers in the industry.
Working at Global Genes for the last five years I had a lot of opportunities to meet and work with incredible patients and pharmaceutical companies that were looking to make a connection to better the way we approach chronic illness, rare disease, health technology, and authenticity when it comes to working with people who have real diseases and are in immediate need of information and resources.
To give you a little background, I’ll tell you that I didn’t know I would end up in this field. Before my diagnosis I was running my own boutique PR agency out of my apartment. I thought my path was pretty clear: I was going to grow as much as I could, get an office space, build a team and expand, expand, expand!
I think everyone who has ever been diagnosed with a rare disease looks back on the days before their diagnosis and thinks “everything was so simple.” I remember carrying around my agenda where I wrote down every hour of my day and then realizing there was no point in planning. How could I plan for a life when my disease had changed everything? How could I keep my company going when I never knew if today was going to be a hospital day or an emergency surgery day or a just-can’t-get-out-of-bed day? I was twenty-two years old and pumping plasma product into my stomach, trying to keep my immune system afloat. My world was crashing down around me.
When I thought about how I was going to handle my disease I knew one thing was certain: there would be no fight. I had not been diagnosed with a cancer that could go into remission. I had been diagnosed with life-long, progressive conditions. I couldn’t resist the reality of what was happening to my body—but I knew I could rebuild from the damage it would have on my life and career.
I had no intentions of going on disability or relying on my then-boyfriend, now-husband to support me financially. I could live with my disease. I could not live with it taking away the part of me that drove me to get out of bed every morning and keep going. I had to work. And so I hung on to my career with every last ounce of energy I had left.
And the opportunities came.
If there was an ounce of self-pity sitting somewhere inside of my gut, my first day at Global Genes quickly snuffed it out. My first assignment was to sit in on a conference call with the NIH about their Undiagnosed Disease Program. I was sitting in my bedroom, folding laundry on the floor. My treatment plan was all over the place and I had fallen enough times to know it was best if I just stayed close to the ground.
The meeting was just a standard information session about that year’s application process and an announcement for how many slots they would have open. It wasn’t until they opened up the floor for questions that I really leaned in. One woman began her question by saying she was down the hall from her son’s hospital room. There was so much anxiety and desperation in her voice. Her son was slowly becoming paralyzed and no one knew why. She was afraid he was going to stop breathing soon—could the program take him? How soon would she know?
Her voice gave me chills.
And as the questions kept flowing and the stories of patients in dire need of help crept into my brain I felt rooted entirely to these faceless voices. How could anything else be more important than what was happening right here?
For five years I worked with patients like these every day. I read their stories, interviewed them, and tried to connect them with patients around the world with similar journeys. I worked with an amazing team of women to generate change through awareness; assistance through channels of information and compassion for those who were experiencing that very same moment where it felt like their world was falling apart.
I don’t think there will ever come a day where I forget that first assignment and where I don’t feel that overwhelming connection to the patient community. Empowering, educating, connecting and guiding them will be a life-long commitment that will follow me wherever I land in my career.
So as I searched for my next role it was my priority to find a meaningful position that would maximize my personal and professional experiences to ease the frustration of a rare and chronic illness diagnosis.
Here’s what I learned about what’s happening in the patient community.
Technology is Revolutionizing the Way We Manage Care
Over the next few years, patients will have more access than ever to the puzzle pieces that make up their diagnostic odyssey. Tech companies are producing programs that will upend the way doctors organize and track cases. Online databases will make sharing test results, blood work, imaging, and clinical notes cleaner and easier than they’ve ever been before. This will be a powerful tool for chronic illness patients who will now have insight into what their doctor is really seeing in their files. The opportunity for medical errors will dramatically decrease.
Trends in technology will include telemedicine with virtual exams and clinical management. Patients will have diagnostic tools in the form of apps like FlareDown which chronic illness patients can use to track the severity of episodic symptoms and Face2Gene which can diagnose rare genetic conditions through a simple selfie.
Big Pharma is Getting Personal with Patients
When it comes to creating cures, big pharma is digging deeper than ever into the potential solutions that patient experience can offer. From clinical trials to drug marketing, these giants are honing in on what’s making the most noise from patient communities and advocacy organizations. They’re reaching out to interview patients on what they can do to improve.
Companies are using patient portals and even patient leader programs like WEGO Health to create programs that are helping them to better understand prescription adherence, engaging social campaigns, health tracking and caregiver concerns.
Healthcare Marketing is Getting Real
The small text with the asterisk in all those prescription commercials saying “these are professional actors?” Those are about to become a thing of the past. Healthcare companies want REAL people representing their brand and they’re counting on innovative new PR companies to make the connection. Recruiting actual patients to share their personal health triumphs is giving brands an authenticity unparalleled by any statistics they can fit into a 60-second-ad.
Patient Advocacy Organization Are More Valuable Than Ever Before
Organizations like NORD, CheckOrphan, Global Genes and the hundreds of other rare and chronic disease organizations that help connect patients with clinical trials, breaking research and most importantly—each other have never been more needed than they are today.
It’s an exciting time for the entire healthcare community and the mammoth amount of meaningful, purpose-driven positions is at an all time high. I didn’t know that I’d end up in this field—but with every conversation I’m realizing that there is nowhere else I’d rather be.