Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, United States.
Department of Neurology, Barrow Neurological Institute, Phoenix, AZ 85013, United States.
Epilepsy Behav. 2021 Apr;117:107805. doi: 10.1016/j.yebeh.2021.107805. Epub 2021 Feb 12.
To describe the organization of the Epilepsy Learning Healthcare System (ELHS), a network that aims to improve care outcomes for people with epilepsy (PWE).
Patients and family partners, providers, researchers, epidemiologists, and other leaders collaborated to recruit epilepsy centers and community services organizations into a novel learning network. A multidisciplinary Coordinating Committee developed ELHS governance and organizational structure, including four key planning Cores (Community, Clinical, Quality Improvement, and Data). Through Quality Improvement (QI) methodology grounded in the Institute for Healthcare Improvement (IHI) model, including iterative Plan-Do-Study-Act (PDSA) rapid learning cycles and other learning and sharing sessions, ELHS equipped epilepsy centers and community organizations with tools to standardize, measure, share, and improve key aspects of epilepsy care. The initial learning cycles addressed provider documentation of seizure frequency and type, and also screening for medication adherence barriers. Rapid learning cycles have been carried out on these initial measures in both clinical centers and community-based settings. Additional key measures have been defined for quality of life, screening, and treatment for mental health and behavioral comorbidities, transition from pediatric to adult care, counseling for women and girls living with epilepsy, referral for specialty care, and prevention and treatment of seizure clusters and status epilepticus.
It is feasible to adopt a learning healthcare system framework in epilepsy centers and community services organizations. Through structured collaboration between epilepsy care providers, community support organizations, PWE, and their families/caregivers we have identified new opportunities to improve outcomes that are not available in traditional care models.
描述癫痫学习医疗保健系统 (ELHS) 的组织架构，该系统旨在改善癫痫患者 (PWE) 的护理结果。
患者及其家属、医疗服务提供者、研究人员、流行病学家和其他领导者合作，招募癫痫中心和社区服务组织加入一个新的学习网络。一个多学科协调委员会制定了 ELHS 的治理和组织结构，包括四个关键规划核心（社区、临床、质量改进和数据）。通过基于医疗保健改进研究所 (IHI) 模型的质量改进 (QI) 方法，包括迭代的计划-执行-研究-行动 (PDSA) 快速学习循环和其他学习和分享会议，ELHS 为癫痫中心和社区组织提供了工具，以标准化、衡量、分享和改进癫痫护理的关键方面。最初的学习循环解决了提供者记录发作频率和类型以及药物依从性障碍筛查的问题。这些初始措施已经在临床中心和社区环境中进行了快速学习循环。已经为生活质量、心理健康和行为共病的筛查和治疗、从儿科到成人护理的过渡、对患有癫痫的妇女和女孩的咨询、专科护理转诊以及癫痫发作群和癫痫持续状态的预防和治疗等其他关键措施进行了定义。
在癫痫中心和社区服务组织中采用学习医疗保健系统框架是可行的。通过癫痫护理提供者、社区支持组织、PWE 及其家属/照顾者之间的结构化合作，我们发现了改善传统护理模式下无法实现的结果的新机会。
