Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June.
As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex. It’s difficult enough having to deal with the symptoms themselves, but managing one’s care makes it that much more challenging.
This became all too clear when my own niece, Maggie, was born with Marfan syndrome. Traveling from specialist to specialist, it became increasingly difficult to keep track of all of Maggie’s health details. Maggie’s physicians needed a full medical history to provide the best possible care, and my sister required access to all of the same information in order to effectively advocate for Maggie. Yet, it seemed like nobody in the equation had complete access to the information they needed about Maggie’s health journey.
I also noticed that my sister struggled with the added burden of carrying around various medical documents whenever they traveled with Maggie. Every family trip came with the stress of transporting and translating all of Maggie’s important medical information.
Early in my career, I was a paramedic and firefighter, and I learned that, when it comes to those moments we hate to think about, securing easy access to life-saving medical information is key. Worry, concern, panic, and sometimes inability limit our memory of critical information. Later, I transitioned into the world of medical research, and my experience as a health executive provided me with critical insight into the importance of observational and patient derived research.
As the uncle of a wonderful young woman with Marfan, I was inspired to find a connection between the need to manage and track one’s health information, the benefits of connecting to rare disease communities, and the difficulties that researchers face in obtaining up-to-date patient data. Maggie as a gifted student and performer, had better ways to spend her time….as did her mother.
The dots started to connect rapidly, and I conceptualized an app that could do it all. I was determined to provide meaningful utility and capture information that would improve quality of life, while centralizing all health information for individuals and their care circles.
In 2016, a wonderful team of talented professionals from diverse backgrounds came together. We created Backpack Health, a mobile and web-based app that empowers patients by allowing them to access, own, and control all their health information, more easily navigate their health journeys, communicate with healthcare professionals, and promote better care for themselves, their loved ones, and their communities. Always keeping in mind Maggie and her care circle.
Just like a real backpack, the portable, multi-lingual app allows users to carry around what matters most – their personalized, comprehensive medical information and documents – in one central location. In just over two years, Backpack Health has made a significant impact for people with chronic, serious and rare health concerns in 66 countries around the world.
Dozens of people have experienced medical emergencies in which Backpack Health was their saving grace, providing immediate access to crucial information, including Maggie, who suffered a spontaneous pneumothorax while at performing arts camp over the summer. The app provided critical information to the camp nurse and gave my sister peace of mind while she was waiting for Maggie to be transported to a hospital.
I am honored to be leading a company that is breaking ground for the rare and complex disease community and contributing to advances in research and healthcare. Maggie continues to be a source of inspiration, and we are all motivated by the great work being done by our partners, like The Marfan Foundation, which resolutely supports the community of individuals with Marfan syndrome and related conditions and their families. We continue to work diligently to enhance our offerings for this incredible community, providing a patient empowerment tool that improves care management and coordination and advances biomedical research for the benefit of all.
Please comment below. I’d love to hear your thoughts on how we can make this tool better and better.