OCTOBER 16-18, 2019



October 16-18, 2019 | Boston, MA

Digital Technology: Patient Empowerment for those with Rare and Complex Diseases

Anyone suffering from Marfan Syndrome or any other genetic disorder knows all too well that the challenge of dealing with a complex disease is more than just coping with its symptoms.  Chronic and rare diseases make an individual’s health journey nuanced and complex, requiring management that extends far beyond scheduling a periodic doctor’s visit or ensuring that one’s flu vaccinations are up to date.  It’s a full-time job that demands both time and energy.


With complex health concerns and conditions comes the need for numerous specialists, medications, and the constant maintenance and tracking of symptoms, as well as the need to remain up to date on the latest treatments and care. Furthermore, with each visit to a new doctor or hospital, patients are burdened with the task of accurately communicating the complexities of their medical histories to ensure they receive the best possible care.


Being able to communicate this crucial information effectively benefits not only the patient but the healthcare professionals as well.  A knowledgeable, engaged patient asks the right questions and shares the right information, guiding professionals and adding to their own care. Furthermore, patients are focused on their own health, whereas healthcare professionals have hundreds of patients to look after.  But, of course, this is easier said than done, as most patients don’t have the tools necessary to make this a reality.


To properly engage and advocate for one’s health, a patient must be empowered with easy access to all of their health information, as well as information about their particular condition.


In today’s health climate, a patient’s health information is stored in numerous portals, apps and online platforms, all just out of the patient’s reach.  Further, these sources only multiply by the various specialists a patient visits, each with their own system.  The solution lies in allowing the patients to become their own “health historians,” thereby simplifying the information collecting process, centralizing the heath data, and empowering the patients.


In addition to making it easier for patients to organize all of their health data and track their health journeys, we must also make it simple for them to access information about their conditions.  Rare disease communities act as a support network and a primary source of information, filtering out the noise to connect patients with the information they need to better manage their symptoms and improve their care. 


This is why The Marfan Foundation has partnered with digital health company Backpack Health, empowering its members by allowing them to manage, own and share their health information.

Today’s technology, including tools such as Backpack Health’s powerful patient empowerment app, has allowed us to create a single, easily accessible platform that can both centralize all of a patient’s health data and connect patients to rare and complex disease communities, empowering the patients and positioning them to become their best advocates.  This tool has the potential to change the lives of those living with rare and complex diseases, making health management and advocacy one less burden to overcome.


Michael Weamer, President and CEO of The Marfan Foundation, and Jim Cavan, President and CEO of Backpack Health, will be joining a panel discussion at the 10th annual Connected Health Conference in Boston, entitled: The Digital Opportunity in Rare and Complex Diseases.

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