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The collaborative process of creating the cystic fibrosis care model of the future
Lower Lobby
The collaborative process of creating the cystic fibrosis care model of the future
Medicine X ePatient Scholar
Imagine a system of Cystic Fibrosis care in which the average patient health-related quality of life is no different from that of the general population, in which people with CF and their families are... Read more

Description

Imagine a system of Cystic Fibrosis care in which the average patient health-related quality of life is no different from that of the general population, in which people with CF and their families are able to achieve their stated goals, and in which the median age at death has doubled from 27.5 years (2013 data) to 55 years. The CF Foundation has been a driving force behind the therapeutics that might increase longevity and there are dozens of initiatives including quality improvement and thousands of people working tirelessly in the fight against this disease, yet we are not where we need to be. What will it take to get there?

To answer this question, the CF Foundation sponsored an effort to implement the Collaborative Chronic Care (C3N) Model to redesign cystic fibrosis care and create the CF care model of the future. The CF community, in partnership with the CF Foundation, worked through a design process that took place between July 2014 and December 2015. Through this process we have formulated a transformative design for the current care system that performs substantially better than is possible today, including a collaborative innovation network – of people with CF, parents, clinicians, and researchers – dedicated to this shared vision, a conceptual model for how to achieve this vision, and a set of design concepts that together could bring about this new system.

We believe that this model, in which we collaborate to learn from every interaction, conduct research, and implement the findings, will harness the motivation and intelligence of the entire CF community and make it easier for everyone to work together at scale to improve health, care, and costs for people with CF.

An important result of the design process was that it increased the degree of belief among participants that transformation is within reach, suggesting specific steps that could be applied to have an impact within a defined time period. We predict an impact on outcomes can be observed within 2-3 years in our pilot centers and transformation of care for virtually all people with CF over a period of 5-7 years.

Our panel includes an adult with cystic fibrosis, a parent of a child with cystic fibrosis, a pediatric pulmonologist, a behavioral scientist and a quality improvement consultant. We are prepared to discuss what we learned working together through the first phase of the implementation of the C3N model, and our plans as we move forward into the next phase, the development of our pilot learning network.

Erin Moore's work in the cystic fibrosis community began when her son was born in 2010. Her initial involvement was in fundraising and then she began working at the State Advocacy Chair for the Ohio Chapter of the Cystic Fibrosis Foundation. In 2012, Erin started working with Cincinnati Children's Hospital in their Pulmonary Department on quality improvement work, bringing all stakeholders to the table in designing systems and tools to better meet the needs of patients, clinicians and researchers to improve health and care in the cystic fibrosis community. Erin is a member of the Committee for Patient Engagement at the Cystic Fibrosis Foundation and works on the Committee for Patient & Clinician Engagement on the New York CDRN. She also leads the patient engagement work for the development of a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis. 

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