Design Phase - 2015
A diverse group of patients, families, clinicians and researchers worked together to co-design the CF Learning Network, a system in which adult and pediatric patients, families, clinicians, researchers and health systems collaborate to learn from every interaction, conduct research, and implement the findings. A networked architecture will allow the CF community to create a flexible, nimble and efficient system to accelerate improvement, research and innovation by harnessing the motivation and intelligence of the entire CF community to improve health, care, quality of life and costs for people with CF.
This phase, which lasted approximately 18 months and ran from July 2014 through December 2015. Participants worked together to co-create the CF Care Model of the Future and developed a common set of targets which serve as the foundation of the proposed future system.
The following changes were recommended by the CF Community to support the transition to a Learning Health System:
- Build capacity and infrastructure for a continuous improvement and research network.
We recommend refining the CF Learning Network and testing it in a small scale by pilot testing with 15-30 CF Care Centers. The initial focus of the network should be to ensure the reliable delivery of evidence-based chronic care in order to reduce care recommendations and outcome variation by center. Participating sites will collect data as part of routine clinical care and share transparently performance data, knowledge, and know-how. The learning through the pilot sites will enable the refining of changes to be spread to the entire CF care center network and build expertise and capacity for scale up. It will also provide a foundation for testing innovations that emerged from the design process and that will emerge in the future.
- Create a resource sharing ‘commons’
We recommend integrating a knowledge-sharing platform into the Learning Network. This ‘commons’ is a key element of the Learning Network infrastructure to manage the wealth of resources that care centers, and the community, create and share (e.g., pre-visit planning flow diagrams, measure definitions, educational documents for school nurses). We recommend instituting appropriate leadership and governance to promote sharing and contribution using existing resources, expertise and policies.
- Modernize the CFF patient registry to support chronic care management, QI, and research.
The Learning Network will provide an excellent means to facilitate the development of an advanced CF registry because it will provide a group of clinical sites that can interact with the technology team as development takes place. Modernizing the registry will reduce costs for improvement and research, while accelerating outcome transformation.
- Build capacity by increasing the number of individuals and organizations that participate.
We recommend building on existing resources including the CF Chapter Network and Volunteer Leadership Conference attendees, Leadership and Learning Collaborative alumni, and Patient and Family Advisory Committees to increase awareness about the opportunity to participate in transforming care. We recommend using formal community organizing training and methods to develop a communication campaign that focuses on building awareness of CF Learning Network and the opportunity to contribute to the shared goal of improving CF outcomes. We further recommend providing training in co-production (working together to improve) to help care centers and patients and families create ways to engage more effectively with one another in improvement, innovation and research.
- Invest in the development and testing of potentially transformative innovations.
We recommend using the Learning Network as a vehicle for testing and progressing innovations developed through the design phase, such as Collaborative Health Tracking, Customizable Dashboards, Shared Decision Making, Transitions, Pre-Visit Planning/Population Management, Open Medical Records, Bundled Payment. We recommend testing a formal process to build infrastructure for moving innovations into practice. As capacity grows, the Learning Network could be used to test innovations developed elsewhere as well as those yet to be discovered.
BASED ON OUR EXPERIENCES WITH OTHER NETWORKS, WE PREDICT AN IMPACT ON OUTCOMES CAN BE OBSERVED WITHIN 2-3 YEARS IN THE PILOT CENTERS. OVER A PERIOD OF 5-7 YEARS, THERE IS A POTENTIAL TO TRANSFORM CARE AND OUTCOMES FOR ALMOST ALL PEOPLE WITH CF.