Sometimes life deals us a rough hand. We’re challenged in ways that we’ve never imagined. It may be a matter of a personal diagnosis, the affliction of a loved one or a tragedy that changes the entire face of our life.
But in the end, what really matters is how we rise above these challenges. How we take action in our own lives and how we use these challenges to help others.
Most of us didn’t set out to be advocates, rather, we evolved into this role.
My personal story is definitely one of challenges. From a young age, I was stricken with health issues that made me modify my life in different ways. Whether it was dropping out of competitive dance in middle school or leaving the pom pom squad in high school, I always had to modify my life because of my health.
By the time I was 27, I was on disability due to psoriatic arthritis and avascular necrosis. My medication tally was up to 9 different oral medications and 2 injections, I couldn’t put any weight on my left leg and I was so depressed I never wanted to leave my bed.
I found myself turning to social media for something to do but scrolling through my Facebook feed became very emotional. Seeing all of my friends living normal, 20-something lives didn’t seem fair. They were going out, having fun – NOT dealing with debilitating health issues.
So I decided to turn to Twitter. It wasn’t a social channel I was very active on in my personal life and figured it’d be a nice distraction to concern myself with people I didn’t know so I couldn’t be envious of their lives.
What ended up happening changed the entire course of my health and life.
I found an entire patient population on Twitter connecting, supporting and empowering each other. I started to become active in Twitter chats, like #SpoonieChat, connecting with other patients through the #spoonie hashtag and started following along with conference feeds. It was fascinating to me the ecosystem that I had stumbled upon.
In the beginning, I used these new found friendships as therapy. It was so therapeutic to talk to others who were in similar situations and understood how I was feeling.
Then, after months of being part of the support system, I decided I wanted to step up and start leading and helping others. I resolved to start my own blog and start sharing my story to help other patients and caregivers feel like they’re not alone.
The Journey To Becoming A Patient Leader
In my early days, I watched on the sidelines to see if I could pick up what others were doing and learn from experience.
I followed well-known online advocates like Christine Miserandino and Barby Ingle hoping to pick up a few pointers from their work. Reaching out to powerhouses in my condition like Britt (Hurt Blogger) and Arthritis Ashley, I tried to learn the lay of the land. I aligned myself with organizations such as The Arthritis Foundation and the National Psoriasis Foundation and volunteered my time to network.
Taking googling to a new level, I searched for companies and conferences looking for patients and started signing up for anything and everything I could find. I joined the Society for Participatory Medicine, WEGO Health and numerous others, not really knowing what I was joining but doing it because it seemed good to associate myself with as many organizations as I could.
I spent countless hours writing on my blog, posting on my social channels and trying to get my message out there. I was on disability, but when I was feeling well I was busy trying to build an advocacy empire. My mom used to joke and say I was the busiest person on disability.
Through all of my own research, I started uncovering truths I now know to be true.
Working with the Arthritis and National Psoriasis Foundations, I realized I could make a difference on Capitol Hill.
From attending conferences like Stanford Medicine X, I was shown that there are many companies out there looking to collaborate with patients to move forward a more patient-centered healthcare system.
And working with companies like WEGO Health, I began to realize the value of my experience and how I truly deserved to be compensated for the work that I was conducting.
These are all things I wish I could have learned upfront from others in the space. Back then, I gave away so much of my time and insight for free. I constantly was looking for a destination that could show me the ropes and connect me with others to learn from.
Introducing WEGO Health’s New Platform
As many of you may know, once I transitioned off of disability I took a position at WEGO Health.
WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of Patient Leaders. We are the world’s largest network of over 100k Patient Leaders, working across virtually all health conditions and topics. Our network collaborates with pharmaceutical and life sciences companies, agencies, consultancies, startups and all types of organizations across healthcare. WEGO Health offers enterprise and on-demand solutions that allow organizations to leverage the patient experience and expertise in the design, development, and promotion of their products and services.
Now, as the Vice President of the Patient Leader Network, I get to work empowering other patient advocates, influencers and healthcare collaborators every day. It honestly is the best job ever.
Over the past few years, WEGO Health has significantly grown our investment in our network, recognizing the millions of patients and caregivers out there who want to be effective online advocates.
With the assistance of our 2018 WEGO Health Patient Leader Advisory Board and 2019 Patient Leader Advisory Board members, we set out to bring to life an eLearning platform to empower those patients and caregivers looking for help, resources, and credibility.
Using proven design methodologies, we worked extensively with over 1,000 Patient Leaders to shape the new WEGO Health platform’s design and features.
In our comprehensive needs analysis, we identified the three top needs of patient leaders:
- A reliable way to find and connect with other advocates
- Courses and certifications to support their skills development as advocates, influencers and healthcare collaborators
- A simple way to find opportunities to collaborate with healthcare organizations and to be compensated for their time and expertise
The new WEGO Health platform is now a one-stop-shop for all three of these challenges. In other words, it will help all of the existing and aspiring advocates out there to create their own path to effective advocacy.
The platform enables members of WEGO Health’s network to complete expert-led courses designed to strengthen essential advocacy skills and to interact with other patient leaders through online forums. It also offers secure access to paid opportunities with healthcare companies seeking to tap the insights and expertise of patient leaders.
The courses on the platform are created and curated by subject matter experts covering topics such as FTC guidelines for patient influencers, community-building through social media, and effective telling of their own health story.
One thing we learned from our analysis is that empowered patients and caregivers want to learn from other leaders in the space. Once you log onto the platform, you’ll see that many courses are created by Patient Leaders within the network. We’re collaborating with top Patient Leaders to leverage their strengths and areas of expertise to bring fellow network members monthly courses designed to add to your Patient Leader skillset.
Truly this platform’s primary goal is to empower patients to become the best advocates they can be. It’s driven by WEGO Health’s shared passion to use patient experiences and knowledge to transform our healthcare system into one that is far more human-centered than it is today.
Learn, Connect And Grow With WEGO Health
This week, we released our labor of love into the world and we want you to know we’re just getting started!
Each month we’ll be rolling out new courses and content. Our new WEGO Health platform will be an ever-changing destination to keep our Patient Leader Network engaged and involved.
We invite you to log in and look around! Check out the content, try out some of the courses and please let us know your feedback.
Not a WEGO Health Patient Leader Network member yet? No problem! Take a moment to create a free account.
Whether you’ve been advocating for years or you’re just starting to think about sharing your story, there’s something for everyone on our new platform.
Learn, connect and grow by leaning into the expertise of over 100,000 Patient Leaders who make up the Patient Leader Network
