Cystic Fibrosis Program
Timeline: Month 2015 – June 2018
Description of the Program
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 was an innovative patient portal, developed and tested between 2015-2018, that displayed real-time, patient-level data from the Cystic Fibrosis Foundation Patient registry. This included: 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 could all access this data via a series of dashboards and communicate with each other to help shape care plans.
How was CF Health Check created?
Members of The Dartmouth Institute coproduction research team coordinated the co-design, development, testing of the digital prototype of CF Health Check in clinical and in-home settings.
Following a user-centered design process and early testing of a prototype in 2016, CF Health Check was released for testing at five programs in July 2017: Ann and Robert H. Lurie Children’s Hospital of Chicago, the adult program at Northwestern University, the University of Minnesota (adult and pediatric programs), and the Children’s Hospitals and Clinics of Minnesota. Over 100 individuals with CF and families are currently testing CF Health Check alongside their clinicians at these sites.
In February, three more programs were invited to test the portal — the adult programs at the University of Virginia and the University of Texas Southwestern and the pediatric program at Children’s Hospital of Los Angeles, adding geographic diversity to the pilot.
Between July 2017 and June 2018, 131 individuals with CF and their families and 30 clinic professionals tested the platform at eight pilot sites. Testing and evaluation of the platform was completed in June 2018. Findings from this project will be shared with the Cystic Fibrosis Foundation to inform future steps.
Case Study
Electronic Prototype Testing of a Coproduction of Care Dashboard
Website
CF Health Check: Sharing Data to Enable Informed Partnerships in CF Care
Journal Article
CF Health Check: Building Partnerships Through Shared Information