It is my pleasure to share my story which illustrates the importance of cost-awareness in healthcare. After nearly 10 years of experience in the IT and internet marketing industry, in 2012 my life changed when I met my co-founder Eli Goldberg who suffers with cystic fibrosis, a rare genetic disease which is both painful and expensive to treat. I learned that people like Eli need to comply with a complex therapy regimen which includes a specially tailored diet and exercise plan, orally consumed medications, nebulized breathing treatments, a cardiopulmonary vest to keep his airways clear, and, since CF sufferers have very weak immune systems, bacteria on these devices must be constantly sterilized or else expensive complications and hospitalizations will occur. Since adherence is so difficult to maintain, with some patients spending upward of eight hours per day performing breathing treatments, people with cystic fibrosis live in constant fear and this is why it is so important to listen to these patients in order to understand how to build solutions that better integrate with their daily flow of life.
We founded a startup company called Aware Engineering and graduated from the Massachusetts Biotechnology Council’s MassCONNECT program where we were mentored by some of the top executives in the Boston ecosystem. I became personally involved in the CF Foundation as an advocate working with patients and their families to better understand their specific problems as I created several significant industry collaborations with the CF Foundation, Boston Children’s Hospital, and Vertex Pharmaceuticals. I learned that patient advocacy has a huge strategic importance in developing useful technologies and ensures a greater likelihood of widespread adoption and this makes sense since patients are the ultimate stakeholders in the healthcare system.
While many in the healthcare industry have said Accountable Care Act must include more payer and provider collaboration in order to achieve the Triple Aim of higher quality, lower costs, and better outcomes, most doctors will tell you their biggest challenge is getting patients to do as instructed. One of my most valued mentors is Dr. Dennis Ausiello, who is on the board of Pfizer and was the Chief of Medicine for Massachusetts General Hospital. Dr. Ausiello felt so strongly about measuring patient adherence that he left his very senior role at MGH after 20 years to found the Center for Assessment Technology and Continuous Health. Through the work that Dr. Ausiello has done at CATCH I have learned that a patient’s adherence to their physician prescribed therapy regimen is the best predictor of their future health. Adherence optimizes cost savings and has huge cascading effects for all stakeholders in the health system. It improves outcomes and keeps people out of the hospital with expensive complications which is good for health plans, hospitals, as well as patients and their families.
As an entrepreneur, the patient-centric approach has made me realize why patients must engage with their prescribed regimens and so I have become involved on the inaugural MassBio Patient Advocacy steering committee. The work I do with MassBio is especially rewarding since I have learned that these patient advocacy groups are driving the innovation conversation with payers, providers, and biopharma companies as we learn to collaborate in a way that optimizes engagement and incentives for all stakeholders.