Ong Thida, Albon Dana, Amin Raouf S, Bailey Julianna, Bandla Srujana, Britto Maria T, Flath Jonathan, Gamel Breck, Powers Michael, Sabadosa Kathryn A, Saulitis Anna K, Thomas Lacrecia K, Thurmond Sophia, Seid Michael
Division of Pulmonary and Sleep Medicine, Department of Pediatrics University of Washington, Seattle Children's Hospital Seattle Washington USA.
Division of Pulmonary Medicine, Department of Internal Medicine UVA Charlottesville Virginia USA.
Learn Health Syst. 2022 Dec 19;7(3):e10354. doi: 10.1002/lrh2.10354. eCollection 2023 Jul.
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.
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.
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.
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.
学习型健康网络是一种学习型健康系统，其中利益相关者利用网络组织来改善健康状况和医疗保健。囊性纤维化学习网络（CFLN）基于囊性纤维化（CF）社区的现有资源构建，旨在通过有意专注于实现可靠的循证慢性护理服务以及创建数据驱动的协作学习系统，来改善医疗结果和生活质量。
我们从网络成熟度网格的六个领域来描述CFLN的发展与成长：系统领导力；治理与政策管理；质量改进（QI）；参与和社区建设；数据与分析；以及研究。我们阐述了CFLN经验对慢性护理流程和协作基础设施指标的影响。
CFLN代表了囊性纤维化基金会护理中心网络中的36个经认可的护理中心，为超过6300名患者提供护理。在每季度6779次患者临床护理就诊中，77%在30天内录入囊性纤维化基金会患者登记处，提供了及时跟踪结果的手段。93%的临床护理就诊中进行了协作就诊计划，以便与患者及其家属共享议程设定。几乎所有CFLN团队（94%，n = 34）都有患者/家属合作伙伴（PFP），74%的PFP表示他们正在积极参与、主导或与跨学科护理团队共同领导质量改进计划。2022年，97%的中心报告每月完成1 - 13个改进周期，82%的中心为月度质量改进进展报告做出贡献以分享经验。
CFLN是一个不断成熟的协作基础设施。CFLN中心在共同生产的高级水平上开展实践。CFLN促进跨学科和患者/家属合作伙伴的领导力以及持续的数据驱动改进周期的执行。CFLN中心有能力应对循证护理的快速变化，并在更广泛的范围内推进质量改进和实施科学的实践。
