Transforming Cystic Fibrosis Care
Together we can accomplish more than any of us can accomplish alone.  


From Design to Pilot

The CF Care Model of the Future is envisioned as a system that makes it easier for everyone - families, people with CF, clinicians, researchers, and others - to work together, at scale, to improve health, care, and costs for people with CF. This system will harness the motivation and intelligence of the entire CF community and use a network-based organizational model to producing increasing value (better outcomes, better care, lower costs) and to align the wide array of existing and new initiatives within the CF community. The objective of the 3-year Pilot Phase of the Cystic Fibrosis Collaborative Chronic Care Network (CF C3N) Care Model of the Future is to test the design for the care model in a subset of the CF Community – a Pilot Learning Network (PLN).
Transforming outcomes and accelerating progress in CF will require changes at the level of the larger CF care system as well as at the level of the care center.  It will also require the active collaboration of large numbers of diverse stakeholders. Our proposed approach is to a) engage 30 care centers (in two waves of 15) in a structured process to build a PLN, b) enable the PLN to uses its community, structures, and processes to pilot test the model and to c) advance innovations developed in the design phase as well as elsewhere. All efforts will be in close collaboration with the CF Foundation and Community. The rationale for this objective and approach is that learning how to operationalize the care model in a subset of the CF Community will increase the level of confidence that the care model can achieve the desired outcomes and at the same time build on (and avoid disrupting) the current system of CF care.
We are in the process of Planning the PLN, reviewing of progress to date - the work that many of you were part of through the design phase - the creation of a charter for the project, and processes for evaluation and oversight. The output for the planning phase will be:
  • A charter for the PLN including agreement on the measures, design targets, and timeline
  • A leadership group or “faculty” to guide the development of the PLN
  • Recruitment of participating care centers
  • Evaluation and assessment criteria
  • A senior leadership oversight committee 
We will launch the PLN in two waves of 15 care centers each and support these care centers using collaborative learning methods and ongoing communication.  A major focus will also be on developing leaders using formal community organizing methods to identify and create a cadre of people with CF, family, clinician and researcher leaders who will ultimately spread and lead the ongoing transformative changes throughout the CF community and care centers. The initial focus of the PLN will be on improving the reliability with which care centers in the PLN deliver evidence-based chronic care (such as pre-visit planning and population management).
CF Care Centers will be expected to work with family/patient partners on these and other improvements. In addition to ongoing improvement work, participation will consist of monthly online meetings, regular sharing of their experiences and tools via an online communication exchange, and participation at biannual community conferences. Support for Care Centers will include leadership development, QI coaching, QI onboarding as necessary, and funds to cover travel. As a result of this phase, we will have achieved:
  • Reliable delivery (>90%) of evidence based chronic care
  • Resources and tools to support improved care delivery that can be broadly shared among care centers
  • A ‘commons’ or Exchange including an on-line community where contribution takes place and resources can be shared and customized to individual needs
  • Comparative process and outcome performance data reported at least monthly (and ideally daily)
  • An ongoing learning network engaged in spreading evidence based changes and developing and testing innovations
Advancing potentially transformative innovations will take advantage of the PLN’s collaborative learning and improvement capability to progressively develop a working care model of the future. A number of innovations, developed as part of the design phase as well as by the CF Foundation and others, are important potential components of the future model, such as a National Patient and Family Advisory Council, an Enhanced Registry, Collaborative Home Tracking Tools, a clinical dashboard, a transition program, shared decision making, and others. We will develop and implement a structured set of processes to developing, testing and spreading innovations to advance these innovations from design, to prototype, to pilot, and implementation and integrate them into the care model system. We expect that using this “innovation management” process within the PLN will result in the capacity to identify and test potentially transformative innovations that will improve the process, outcomes and costs of care.

An important result of the design process was that it increased the degree of belief among participants that transformation is within reach.  The CF Foundation has an opportunity to continue to build on this learning to further the transformation towards the CF Care Model of the Future. The expected outcome for this pilot phase is sufficient evidence, knowledge, and know-how to plan further scale up of the care model to the rest of the CF Community. Based on our experience in other networks, we predict an impact on clinical outcomes can be observed within 2-3 years within centers in the pilot phase. Over a 5-7 year time horizon, there is potential to transform care for virtually all people with CF.  
As some of you may be aware, the annual Cystic Fibrosis Foundation’s Volunteer Leadership Conference (VLC) will convene in Washington, DC later this week on March 11th and 12th. The VLC is an opportunity for many of the volunteer leaders to join with Cystic Fibrosis Foundation leadership as they share updates from recent breakthroughs in science, treatment and care, and discuss how the Foundation is evolving to meet the growing needs of all people living with CF.
The VLC enables people in the CF community across the country to collaborate and share ideas with each other. Though attendance to the VLC is by invitation-only, parts of the conference will be live-streamed. This provides the opportunity for our broader CF C3N community to listen to and learn from the CF community, which will help us gain a better understanding of the community’s perspective and interests. You may register for the live stream of the 2016 VLC here.
We also have the chance to share with the greater CF community the value of collaborative learning and co-production and grow interest, excitement and participation in our important work. You can tweet about our work and what you are learning from the VLC via Twitter using the hashtag #CFVLC2016. Hope to see you there!

Where We've Been

To review a summary of the specific innovations we explored during the design phase, watch these Virtual Brown Bag (VBB) videos:  


Final Design, Session 1 | 12/9/15:

Final Design, Session 2 | 12/17/15:

CF Coproduction Dashboard | 12/21/15:

Enhanced Registry | 1/4/16:
Stay In Touch

We hope to use this newsletter to keep you updated and informed throughout the planning process of the Pilot stage and beyond.  Further questions can be directed to