Van Citters Aricca D, Buus-Frank Madge E, King Joel R, Seid Michael, Holthoff Megan M, Amin Raouf S, Britto Maria T, Nelson Eugene C, Marshall Bruce C, Sabadosa Kathryn A
The Dartmouth Institute for Health Policy and Clinical Practice Geisel School of Medicine Lebanon New Hampshire USA.
Department of Pediatrics Dartmouth Health Children's Lebanon New Hampshire USA.
Learn Health Syst. 2022 Dec 20;7(3):e10356. doi: 10.1002/lrh2.10356. eCollection 2023 Jul.
The Cystic Fibrosis (CF) Foundation sponsored the design, pilot testing, and implementation of the CF Learning Network (CFLN) to explore how the Foundation's Care Center Network (CCN) could become a learning health system. Six years after the design, the Foundation commissioned a formative mixed methods evaluation of the CFLN to assess: CFLN participants' understanding of program goals, attributes, and perceptions of current and future impact.
We performed semi-structured interviews with CFLN participants to identify perceived goals, attributes, and impact of the network. Following thematic analyses, we developed and distributed a survey to CFLN members and a matched sample of CCN programs to understand whether the themes were unique to the CFLN.
Interviews with 24 CFLN participants were conducted. Interviewees identified the primary CFLN goal as improving outcomes for people living with CF, with secondary goals of providing training in quality improvement (QI), creating a learning community, engaging all stakeholders in improvement, and spreading best practices to the CCN. Project management, use of data, common QI methods, and the learning community were seen as critical to success. Survey responses were collected from 103 CFLN members and 25 CCN members. The data revealed that CFLN respondents were more likely than CCN respondents to connect with other CF programs, routinely use data for QI, and engage patient and family partners in QI.
Our study suggests that the CFLN provides value beyond that achieved by the CCN. Key questions remain about whether spread of the CFLN could improve outcomes for more people living with CF.
囊性纤维化（CF）基金会赞助了CF学习网络（CFLN）的设计、试点测试和实施，以探索基金会的护理中心网络（CCN）如何能够成为一个学习型健康系统。在设计完成六年后，基金会委托对CFLN进行了一次形成性混合方法评估，以评估：CFLN参与者对项目目标、属性以及对当前和未来影响的看法。
我们对CFLN参与者进行了半结构化访谈，以确定该网络的感知目标、属性和影响。在进行主题分析之后，我们开发并向CFLN成员和CCN项目的匹配样本发放了一份调查问卷，以了解这些主题是否为CFLN所特有。
对24名CFLN参与者进行了访谈。受访者将CFLN的主要目标确定为改善CF患者的治疗效果，次要目标包括提供质量改进（QI）培训、创建一个学习社区、让所有利益相关者参与改进以及向CCN传播最佳实践。项目管理、数据使用、常见的QI方法和学习社区被视为成功的关键。从103名CFLN成员和25名CCN成员那里收集了调查问卷回复。数据显示，与CCN受访者相比，CFLN受访者更有可能与其他CF项目建立联系、常规性地将数据用于QI以及让患者和家属合作伙伴参与QI。
我们的研究表明，CFLN提供的价值超出了CCN所实现的价值。关于CFLN的推广是否能够改善更多CF患者的治疗效果，关键问题仍然存在。
