Establishing a Cystic Fibrosis Learning Network: Interventions to promote collaboration and data‐driven improvement at scale

Abstract

Introduction: A learning health network is a type of learning health system in which stakeholders use network organization to improve health and health care. Building on existing resources in the cystic fibrosis (CF) community, the Cystic Fibrosis Learning Network (CFLN) was designed to improve medical outcomes and quality of life through an intentional focus on achieving reliable evidence-based chronic care delivery and creating a system for data-driven collaborative learning. Methods:We describe the development and growth of the CFLN considering six domains of a Network Maturity Grid: system leadership; governance and policy management; quality improvement (QI); engagement and community building; data and analytics; and research. We illustrate the impact of the CFLN experience on chronic care processes and indicators of collaborative infrastructure. Results: The CFLN represents 36 accredited care centers in the CF Foundation Care Center Network caring for over 6300 patients. Of 6779 patient clinical care visits/quarter, 77% are entered into the CF Foundation Patient Registry within 30 days, providing timely means to track outcomes. Collaborative visit planning is occurring in 93% of clinical care visits to share agenda setting with patients and families. Almost all CFLN teams (94%, n = 34) have a patient/family partner (PFP), and 74% of PFPs indicate they are actively participating, taking ownership of, or leading QI initiatives with the interdisciplinary care team. In 2022, 97% of centers reported

The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact

“…Interview respondents reported that the triad leadership structure 22 (physician leaders, QILs, and PFPs) supports governance and guides decision‐making and prioritization of local and network level activities. They stated that this integrated leadership structure models that seen with coproduction 33‐35 …”

“…Finally, our evaluation does not include objective measures of impact. Changes associated with specific CFLN initiatives are reported elsewhere (eg, telehealth) 22,30 …”

“…Learning Health Networks use an actor‐oriented network organizational architecture 25 to enable all stakeholders to engage in collaborating at scale to improve health and health care. The CFLN implemented a set of interventions based on the Network Maturity Grid 26 to facilitate the involvement of stakeholders; structures, processes, and protocols that facilitate collaboration; and a commons where participants can create and share resources 22 . Participating programs agree on a shared purpose, develop local SMART aims, and use The Model for Improvement (MFI) 27,28 to structure learning and tests of change.…”

Transforming the nutrition care model for infants with cystic fibrosis: A qualitative study of clinicians' perspectives

“…The CFLN is a network of accredited CF programs 14 that practice continuous quality improvement. 15 The CFLN at the time of recruitment had 26 of a total 39 programs who had pediatric-…”

A new era in cystic fibrosis care: always changing and adapting

“…This collaborative project with PwCF and parent and family partners (PFP) has worked to change our practice by increasing our use of previsit planning and patient centered agenda setting. The Cystic Fibrosis Learning Network has increased parent and family partners participation with almost all Cystic Fibrosis Learning Network participating centers having them with 74% of PFP actively participating in quality improvement initiatives [82].…”