WTFix Tweet Chats

Patient empowerment: It takes a village

Sol’s Journey: It Started with a Flyer

When people ask me how the idea for Clara came about, it always surprises them when the first thing I say is that “It started with a flyer.”

As a student at Brown University,  I frequently saw flyers on my campus advertising a local band playing that night, an apartment for rent, or a coffee shop comedy show. But on my way to class one morning, there was one that was striking among the rest– it was recruiting for a breast cancer clinical trial.

I was floored. As I continued walking to class I felt that I was no longer walking in my own shoes. I was walking in the shoes of a breast cancer patient struggling with a difficult diagnosis, trying to make educated decisions and find the best treatment out there.

The logical part of my mind recognized that perhaps this trial held hope for a better future for a breast cancer patient, but to find it stapled to a telephone pole? Many patients who might benefit from this trial would never see it, and anyone who did was likely to ignore it. I thought, “How can a patient feel empowered to make treatment decision when that information is coming from a flyer?” It was incomprehensible and unacceptable.

I feel as if I’ve been walking in patients’ shoes since that day, when I found purpose in my mission to change the clinical trials landscape. Myself and my co-founder Evan Ehrenberg knew from the start that we couldn’t develop the best platform for patients without incorporating PATIENTS, and while it wasn’t the norm in digital health, we made the unprecedented decision to make Lilly, a patient advocate,  the third official hire at Clara Health.

Learning from and with patients and advocates has been an inspiring experience that keeps myself and the team motivated. They have truly shaped the direction of our platform and I feel we have been able to make great strides from that flyer that started it all because of the patients we work with.  I am consistently amazed by their perseverance and will to support each other as a community and am honored to have the opportunity to serve them.

Lilly’s Journey: My Reason for Being

I believe everything happens for a reason.

Six years ago, after an onslaught of testing and doctor’s visits, I was diagnosed with psoriatic arthritis, an autoimmune disease that resulted in total body arthritis and paralyzing pain that made even the slightest movement excruciating. The diagnosis turned my life upside down. Every day was a battle against my joints, fatigue and my self-confidence.

Five months after my diagnosis, I was in and out of the ER three times over the course of one weekend with stomach pain that made even drinking water unbearable. While many of the doctors were convinced it was all in my head (even though I was on 90 milligrams of morphine and it didn’t even come close to taking away the pain), a camera study proved otherwise when bleeding ulcers were discovered in my small intestine. It was at this point I was diagnosed with yet another autoimmune disorder: Crohn’s disease.

At the early age of 19 I had received back-to-back diagnoses of serious chronic illnesses. I endured countless failed treatments, debilitating fatigue, strained relationships and felt more pain than I could have ever imagined.

I often felt powerless. But there was one outlet that empowered me and that was the notion that I could change the healthcare landscape for other patients. From the time I was in the hospital bed, I knew that this was my life’s mission, my reason for being. I had to find a way to advocate for autoimmune patients…so that someday, no one would have to undergo the pain and suffering myself and my loved ones endured.

I took time to think critically about how I could leverage my personal strengths to facilitate change. I had a background in advocacy and communications and while I could have gone back to school to become a doctor, nurse, or researcher (don’t get me wrong…those jobs are critically important!) I ultimately made the decision to pursue a career in patient advocacy. I couldn’t be more grateful I took this path. It truly takes a village to make healthcare work…and every player in the space is equally important.

By leveraging my strength as a communicator and personal experience as a patient, I am proud to say I have been able to facilitate change from the bedside, to capitol hill and within the digital health industry where I now work to ensure that the patient voice always remains at the center of innovation.

Teaming Up: It Takes a Village

Together at Clara, our team work to demystify the clinical trials experience and empower patients with the knowledge they need to make informed treatment decisions. And all of us recognize that true empowerment stems from the collaboration of stakeholders across healthcare. That’s why we engage patients, nurses, and professionals in our Breakthrough Crew program to help raise awareness about the power of breakthrough research.

What’s the Fix?

At Clara, we’re building a village to help empower patients by demystifying clinical trials and supporting them through the search and enrollment process. But there are so many facets of the healthcare system that need their own villages. From insurance and medication to coordinated care and hospital visits…each one requires a team of the stakeholders impacted to ensure that patients are empowered.

Join Sol and Lilly for the #WTFix tweet chat on September 27 at 1pm Eastern – we’ll be talking about our experiences and how we’ve teamed up to empower patients (and help uncover how you can too! Here are the questions we’ll be discussing during the chat:

T1. What inspired your passion to help change #healthcare? What event helped make you an empowered patient? We want to hear your story! #WTFix

T2. What villages are you part of now? What aspects of the health care system are you working to change? #WTFix

T2a. If you don’t already have a village of empowered patients & support around you, what village will you (or would you) build to empower yourself and others? #WTFix

T3. Who are the key players that you need in your village to help you achieve success? #WTFix

T3a. Who is one person in this chat you can partner with to start making change TODAY? #WTFix

Lilly Stairs
Lilly Stairs
Since being diagnosed with psoriatic arthritis and Crohn’s disease in 2011, Lilly has dedicated her life to patient advocacy. Lilly currently serves as the Head of Patient Advocacy at Clara Health and as a Board Member for the American Autoimmune Related Diseases Association (AARDA). She is proud to serve on the Digital Advisory Board for the 2018 #WTFix Conference. Learn more about Lilly by visiting her website.

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