Cystic Fibrosis Learning Network Learning Structure for Multicenter Spread of Co-Production and Timely Patient Registry Data Entry Practices

Background: The Cystic Fibrosis Learning Network (CFLN) is a group of 34 programs that work and learn together with shared measures and processes to improve patient outcomes. Interventions are organized into change packages (collected, actionable concepts to share tested, refined ideas across multiple care centers). Since 2016, these change packages have helped advance team level co-production and improve timely data entry (TDE) and quality and use of Cystic Fibrosis 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 to promote peer-to-peer learning were needed to spread and sustain these interventions. The objective was to describe the shared multicenter learning method used to spread practices in two series: co-production (recruitment and onboarding of patient and family partners (PFPs)) and TDE entry into the CFFPR. Method(s): In the design phase of the learning structure, we developed objectives specific to each series. Community content experts refined the curriculum from the established change package concepts. Teams were recruited through an open invitation to all CFLN sites. and met virtually biweekly for 30-minute sessions for 10 to 12 weeks. CFLN content experts used the change packages to coach teams and share their experiences during learning structure huddles. These sessionswere followed by 2-week action periods to review and test change package ideas. Teams shared progress at each meeting in round-robin format. Progress toward smart aims, team experience, and participation were assessed using descriptive surveys before, during, at the end of the series, and 6 months after it closed. Result(s): In initial surveys, teams self-reported awide range of experiences with co-production and TDE into the CFFPR. Participating teamswere from pediatric and adult programs that varied in number of patients and geographic location. Four teams participated in the co-production series to recruit and onboard PFPs within 6 months of completion. In the 6-month follow-up survey, two of the four teams met their goal of recruiting and onboarding a new PFP. The remaining teams reported barriers related to institutional policies that limited training for volunteers. In the TDE series, five teams joined and aimed to improve TDE into the CFFPR within 8 months. All five teams are on target to meet this goal. For both series, action-period surveys revealed completion of tasks assigned (e.g., reviewof change package concepts, testing tools, process maps, barriers, facilitators). Feedback surveys collected during the final sessions of each series indicated that the learning structure helped teams meet expectations, learn something new, and increase confidence in the interventions. Conclusion(s): This learning structure for spreading standard interventions helped teams meet series' aims. The small-group structure allowed teams to learn and adapt coproduction and timely data change package ideas and sustain practices for at least 6 months. In future iterations, this learning structure could be used as a model to spread standard interventions to other programs in the CFLN and the larger care center network.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved

Rapid innovation and learning structure in the CF learning network: The telehealth ilab

Background: The COVID-19 crisis provided an opportunity for shared learning across CF centers in the CF Learning Network (CFLN). The CFLN is a group of CF Foundation-accredited care programs led by people with CF (PwCF), their families, and clinicians. The teams learn from each interaction between clinicians and PwCF using quality improvement (QI) tools, data, and shared tests of change. QI work is focused on co-produced, interdisciplinary (IDC) care. At the onset of the pandemic, the CFLN network leadership team (NLT) and operations team shifted from prior QI work to develop a telehealth innovation lab (ilab) to maximize shared learning. We describe the innovation structure, team engagement, and shared learning across sites in the telehealth ilab. Aim: Increase percent of co-produced, IDC telehealth visits from 55 to 95% by May 31, 2020. Methods: The NLT designed the ilab structure in 3 weeks, compared to 3-6 months from prior ilab designs. An innovation model was used to determine the aim, measures, interventions and tests of change for the ilab. The initial key drivers and interventions prioritized were IDC and patient and family shared agenda setting at virtual visits. CFLN team participation was voluntary. Teams were allowed to choose one or both interventions with data submission expected for both interventions. Expectations included weekly huddle attendance, data collection, and orchestrated tests of change. Early tests included processes for IDC, agenda setting, and response to patient feedback. Teams shared learning in a collaborative platform. Teams able to execute reliable processes at 80% of visits presented their work during weekly huddles to benchmark learning. Results: Twenty-nine of 39 CFLN teams enrolled in the telehealth ilab. Over 4 weeks, teams submitted an average 1.2 tests of change per week. As of May 31, IDC team members joined 1265 of 1931 virtual visits across all teams (median 66%). This measure excluded the provider and nursing staff. Of those same virtual visits, 1136 visits (median 59%) included shared agenda-setting among the team, patients and families. Reliable processes shared were virtual team rooms, clinic flow facilitators, and surveys for patient feedback. Conclusions: The CFLN teams were highly engaged in sharing of rapid telehealth innovations. Although the aim to increase IDC and agenda setting in virtual visits did not reach goal, the ilab provided dynamic, data-driven learning to maintain team engagement and meet the needs of PwCF and their families. The lab structure will continue in order to meet the changing challenges of the pandemic and institutional barriers such as staff re-assignment, furloughs, and resumption of in-person care. The revised aim of the lab will continue interventions related to IDC and agenda setting while expanding the scope to include visits with both in-person and virtual visits with interdisciplinary team members.