“What will it take to get the right treatment to the right person at the right time, every time?”
— CF Mom

What We Do

We are a group of patients and parents working collaboratively with clinicians and researchers to reduce the unintended variation in CF Care by identifying and testing solutions and tools that have the potential to improve health and care in the CF Community.

As a Collaborative Innovation Network, our contributors are naturally motivated to contribute and learn.  Our core leadership is made up of patients, clinicians and researchers with complimentary knowledge all working together.  Participation is constantly in motion, with roles shifting in dynamic ways over time and not in a linear motion.  New ideas move away from the center reaching the larger community, just like a ripple after a pebble hits the water.   We believe in the power of being open, allowing information to be freely shared and supporting people to take action.

Our Aim

Our aim is to achieve outcomes that are not possible through the current system of CF Care. We expect that, by December 2018, our CF Learning Network will have demonstrated progress toward improving outcomes and established an infrastructure for ongoing collaborative learning. 

We expect to see improvements in the following outcomes:

Quality of Life and Well-Being Outcomes

An increase in the percent of patients reporting that their overall health, quality of life, mental health, and physical health are “excellent” or “very good”.

An increase in the percent of patients who report being very satisfied or satisfied with progress towards personal goals.

An increase in the percent of patients and families who say they can tell their care team anything (trust!)

Clinical Outcomes

An improvement in pulmonary function

An improvement in nutritional status

A reduction in average number of treatment days due to pulmonary exacerbation

Cost of Care

Reduction of out of pocket costs

Timely access to care


Reduction in clinician burnout

Minimize the treatment burden 

Data Quality

 Timely entry of patient visits into the registry (imagine real time data!)


We follow the Institute for Healthcare Improvement's Learning Health System Model. QI is critical in the creation and application of fast-paced continuous learning.  A toolkit of ideas, examples and applications we use are detailed in the book, “The Improvement Guide.”  One particular method that is essential to how we work is called a PDSA, and stands for Plan, Do, Study, Act.  PDSAs take advantage of feedback loops – a QI trademark – and continuous learning.  By practicing QI, we have the capability of making changes and studying the impact in real-time.