Working Faster and Changing Outcomes

By: Erin Moore

Earlier this month, we had the opportunity to spend two days at a meeting with other “experts” in the CF community working to figure out how we can shift outcomes and do it quickly. This Expert Meeting was held in Baltimore on May 9th and 10th and involved about 40 people from the Planning and Stakeholder Advisory Committees. There were parents and people with CF, leaders from the Foundation, pediatric and adult care clinicians, and experts in healthcare quality improvement from inside of and outside of the CF community.


We are at the point of launching our pilot CF Learning Network to really understand the impact of doing things differently. We are creating a system that will allow us to learn across programs and from one another: patient to patient, patient to clinician, clinician to patient, program to program. The goal of our Learning Network is ultimately to improve outcomes faster, in ways that we haven’t been able to do before. The way that we think we can achieve that is by making it easier for everyone to learn and contribute. The goal of the Expert Meeting meeting was to align on how we are going to do it.

Our first day started off with Bruce Marshall sharing a bit of the history of the CF Foundation and how the strategic planning process from several years ago helped them to shift their focus from being solely on finding a cure to serving people living with CF and their families in their day to day lives. We recognized and celebrated all that’s been accomplished over the past 60 years in this community and how it has allowed us to create so many of the pieces to put this puzzle together. There was a vision of the future that was shared by many in the room: programs delivering safe, reliable, state-of-the-art care focused not only on physical health, but also on mental, social health and emotional health; an up-to-date and accurate picture of how programs and the Care Center Network are doing on key outcomes and process metrics; and an environment where care teams and people with CF have access to real-time health information to inform decision making.

We had the opportunity to learn from different stakeholders about what this work means to them and the importance of working together as we go forward. We heard from care program representatives about the processes they use for pre-visit planning (PVP) and population management, two components of the Chronic Care Model that we all agreed would be a foundation for success of the CF Learning Network. There is alignment on focusing on reliable delivery of elements of the Chronic Care Model and on building co-production capability – training clinical teams and people with CF (and family caregivers) to work together to improve care at the program level. We worked together to determine short- and long-term measures of success and discussed the ways in which we will need to collaborate to achieve them. These goals will help us to communicate what direction we need to go and set expectations on whether we need to maintain, improve, or transform.

We left with the appreciation that this work will be a process. A system is an interdependent group of people and processes with a common aim, and we were able to start to see how we, with our unique experiences and perspectives, can only create this together.

Over the next several weeks we will be working to further refine our measures and begin recruitment of the care programs that will comprise the pilot CF Learning Network. This is an exciting time, and we are so grateful to have so many of you working with us to create the future of CF care!