(109) The Cystic Fibrosis Learning Network: A mixed methods analysis of program goals, features, and impact

Background: There is evidence that participation in a learning health network can improve health outcomes across diverse populations. However, little is known about the perceived value of the Cystic Fibrosis Learning Network (CFLN), the complexity of implementing the network across diverse contexts, or the value of the network above and beyond that which is available within the broader CF Foundation care center network. Our research objectives were to assess: (1) the degree to which CFLN participants are aware of and agree on CFLN program theory, including goals and critical features; (2) the impact of the CFLN on core process measures, and (3) the need for tailoring of the CFLN across contextually diverse CF care programs.

Methods: We conducted a mixed-methods evaluation. We interviewed 24 CFLN members: leaders/sponsors (n=5) or program staff (n=3), patient and family partners (PFPs) (n=6), physician leaders (n=6), and quality improvement (QI) leaders (n=4). We collected survey responses from 103 CFLN members (30 physicians, 26 program coordinators/QI leaders, 43 PFPs, and 4 other members) and 25 team members of CF programs not engaged in the CFLN (15 physicians, 10 program coordinators/QI leaders). CFLN and non-CFLN sites were matched based on size and program type. We used thematic analysis to analyze interview responses and descriptive statistics to summarize and compare survey responses from CFLN and matched non-CFLN respondents.

Results: Interview respondents identified the primary goal of the CFLN as improving outcomes for people living with CF. Secondary goals included training in QI methodology, participating in a learning community, engaging all stakeholders (including PFPs) in changing care practices, and spreading learnings to the extended CF care center network. The most essential features of the CFLN included project management, the data and technology infrastructure, a common QI method, and belonging to a learning community. The most important accomplishments to date were identified as improved outcomes, coproduction with PFPs, creation of a learning community, and structuring of work using QI methods. Relative to the matched sample, CFLN survey respondents were more likely to report a workplace culture that is supportive of improvement; make connections with people from other CF programs working on similar QI projects; have data that are available, accessible, and used; and engage PFPs in QI work. PFPs at CFLN programs were significantly more likely to participate in QI, to be onboarded, to receive training, and to receive payment for QI work. Sustainability and efficiency, spread outside of the CFLN, and communication about future directions of the network presented improvement opportunities.

Conclusions: We found that the CFLN is associated with notable differences in PFP engagement; use of data to support improvement; and the formation of a community of practice that supports connections with others engaged in QI. Additional work is needed to develop strategies to spread best practices to the broader care center network, to ensure that participation in a focused network is sustainable, and to evaluate the impact of the CFLN on outcomes compared to similar non-CFLN care centers.

Acknowledgements: This work was supported by the Cystic Fibrosis Foundation [grant number NELSON20QI0].

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