(91) CF Learning Network (CFLN) Learning Structure for Multicenter Spread of Co-Production and Timely Patient Registry Data Entry Practices

Background: The CFLN is a group of 34 programs who work and learn together with shared measures and processes to improve patient outcomes. Interventions are organized into “Change Packages (CPs),” i.e. collected, actionable concepts to share tested and refined ideas across multiple care centers. Since 2016, these CPs have helped advance team level co-production (co-pro) and improve timely data entry (TDE), quality and use of CF Foundation Patient Registry (CFFPR) data. In the context of the COVID-19 pandemic, in-person meetings were curtailed and team membership changed often. New learning structures (LS) to promote peer-to-peer learning were needed to spread and sustain these interventions.

Objective: To describe the shared multicenter learning method used to spread practices in two series (a) Co-Pro: recruitment and onboarding of Patient and Family Partners (PFPs) and (b) TDE entry into CFFPR.

Methods: In the design phase of the LS, we developed objectives specific to each series. Curriculum was refined from the established CP concepts by community content experts. Teams were recruited through an open invitation to all CFLN sites. Teams met virtually biweekly for 30-minute sessions over 10-12 weeks. CFLN content experts used the CPs to coach teams and share their experiences during LS huddles. These sessions were followed by 2-week action periods with expectations to review and test CP ideas. Teams shared progress at each meeting in round-robin format. Progress toward smart aims, team experience, and participation were assessed with descriptive surveys prior to, during, at the end of and 6 months after the series closed.

Results: In initial surveys, teams self-reported a wide range of experiences with both co-pro and TDE into CFFPR. Participating teams were from both pediatric and adult programs, varying in patient size and geographic location.

In the Co-Pro series, 4 teams participated with the aim to recruit and onboard PFPs within 6 months of completion. In the 6-month follow-up survey, 2 of the 4 teams met their aim to successfully recruit and onboard a new PFP. The remaining teams reported barriers related to institutional policies that limited training for volunteers.

In the TDE series, 5 teams joined and aimed to improve TDE entry into the CFFPR within 8 months. All 5 teams are on target to meet this goal.

For both series, action period surveys revealed completion of tasks assigned (e.g. review of CP concepts, testing tools, process maps, and barriers and facilitators). Feedback surveys collected during the final sessions of each series indicated that the LS helped teams meet expectations, learn something new, and increase confidence in the interventions.

Conclusions: This LS for spreading standard interventions aided teams to successfully meet series’ aims. The small group structure allowed teams to learn, adapt, CP ideas in and sustain practices for at least 6-months. In future iterations, this LS could be used as a model to spread standard interventions to more programs in the CFLN and the larger care center network.

Acknowledgements: Supported in part by grant from the CF Foundation: SEID19AB0.

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