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 completing 1-13 improvement cycles per month, and 82% contributed to monthly QI progress reports to share learning.

Conclusion: The CFLN is a maturing, collaborative infrastructure. CFLN centers practice at an advanced level of coproduction. The CFLN fosters interdisciplinary and PFP leadership and the performance of consistent data-driven improvement cycles. CFLN centers are positioned to respond to rapid changes in evidence-based care and advance the practice of QI and implementation science on a broader scale.

Keywords: coproduction; cystic fibrosis; learning networks; quality improvement.

FIGURE 1

CF Learning Network Key Driver Diagram 2021

FIGURE 2

Cystic Fibrosis Learning Network Organizational Chart. Members are delineated in blue and functions and activities are in yellow

FIGURE 3

Timeliness of data entry: percentage of clinic visit encounters entered in the CF Foundation Patient registry within 30 days of the encounter date per quarter‐year from centers in the CF Learning Network (CFLN) and the non‐CFLN centers in the CF Foundation Care Center Network

FIGURE 4

Reliability of Chronic Care Delivery in Clinic Visits for (A) Interdisciplinary Care (IDC) and (B) Collaborative Visit Planning. IDC visits involve a physician and at least one other care team member. Collaborative visit planning is defined as an opportunity for patients and families to participate in shared agenda setting for the clinic visit

FIGURE 5

Percentage of CFLN programs reporting 3 or higher satisfaction scores with CFLN support. Likert Scale ranking from 1 to 5 was used, where 5 = highest satisfaction. Cohorts 2 and 3 were additional waves of recruited centers that joined the original 13 CFLN centers at noted intervals

FIGURE 6

Coproduction scales over time are rated by (A) CFLN programs and (B) patient and family partners (PFPs). Team scores were rated on a scale from 1 to 7, 1 = no PFP involvement and 7 = multiple PFPs taking QI leadership roles. PFP scores rated 1–7, where percent report 5 or higher represent active participation, ownership, or leading QI work. Centerline data is reported in the blue box. Cohorts 2 and 3 were additional waves of recruited centers that joined the original 13 CFLN centers at noted intervals

FIGURE 7

CFLN Program Participation 2016‐2022, (A) Meeting Participation and (B) Survey Participation. Annotations in blue boxes represent centerline data; in yellow boxes, programs entering or leaving CFLN; and in orange boxes, other key events. Virtual Community Conference, VCC; Quality Improvement Leader, QIL

FIGURE 8

Monthly average number of PDSA (Plan‐Do‐Study‐Act) cycles reported per program 2020–2022. Centerline data is reported in the blue box