CF Health Check is an innovative patient portal
that displays real-time, patient-level data from the Cystic Fibrosis Foundation Patient registry.
Cystic fibrosis (CF) is a genetic disease that affects approximately 30,000 people in the United States and 70,000 worldwide. CF is caused by a genetic mutation that impacts how the body produces mucus, digestive fluids, and sweat. Today, there are no cures for CF, but the methods for managing symptoms have greatly improved, which has increased the life expectancy for children born with CF to 42–50 years.
Treatment of CF patients is complex, however, and having up-to-date data could help both families and providers stay on top of treatment plans and symptoms. CF Health Check is an innovative patient portal, first tested in 2015 that displays real-time, patient-level data from the Cystic Fibrosis Foundation Patient registry. This includes: clinical data from visits; patient-generated health information and questions for clinics; summaries for next steps following a visit and patient-generated goals; and barriers to maintaining daily care. Patients, families, and care team members can all access this data via a series of dashboards and communicate with each other to help shape care plans.
Members of The Dartmouth Institute coproduction research team are currently coordinating the testing of the digital prototype of the CF Health Check live in clinical and in-home settings. To date 40 individuals with CF and their families and 30 clinic professionals are testing the platform at five pilot sites: the pediatric and adult programs in Chicago (Ann and Robert H. Lurie Children's Hospital of Chicago/Northwestern) and two pediatric programs and an adult program in Minneapolis (University of Minnesota and Children's Hospitals and Clinics of Minnesota). Each site has assembled a team to work on this project. Testing and evaluation of the platform will continue through December 2018. As learning continues, 10 more CF programs are expected to join the testing and evaluation of the solution.