What if we could change healthcare to increase the chances for a good outcome?
The Cystic Fibrosis Foundation has been a driving force behind research on therapeutics to increase longevity. It has a well-developed national Care Center Network, a transparent patient data registry, and long-standing quality improvement (QI) infrastructure. There are dozens of initiatives and thousands of people working tirelessly in the fight against this disease. Together, these assets have created a solid foundation on which to build a system to achieve transformative outcomes.
HOWEVER, RECENT DATA SUGGEST THAT PROGRESS HAS PLATEAUED WITHIN THE CURRENT CF CARE SYSTEM.
- While the median life expectancy continues to improve, this is mostly relevant to the newly diagnosed - for children born in 2001, the predicted median age of survival was 33.9, and for children born in 2016 the predicted median age of survival was 47.7. Meanwhile, the median age of death improved less than 5 years over an 18 year period, from 24.7 in 2001 to 29.6 in 2016.
- The rate of pulmonary exacerbations has not changed since 2004. The number of days of treatment required for these exacerbations has increased slightly, with home IV treatment days declining and days in hospital more than making up for that decrease.
- Despite the accomplishments and transparency of the CFF Patient Registry, the existing technology has not kept pace with advances in registry technology. Outcome data is reported nearly a year after it is captured.
- Cost pressures continue to rise both for clinical care and therapeutics.
Driven by the question
The CF Learning Network serves as an engine for innovation that designs, tests, pilots and implements innovative ideas that have the potential to change outcomes. Together this community can create an immensely different health system that improves health and quality of life for people living with cystic fibrosis.