Building Modular Pediatric Chronic Disease Registries for QI and CE Research

描述（由申请人提供）：学习型医疗保健系统由一线临床医生、患者和科学家组成，他们将每次临床接触视为学习和改善患者预后的机会。在最先进的状态下，它将比较有效性（CE）研究与质量改进（QI）科学相结合，以确保在护理点提供新知识。电子健康记录有可能成为在护理点学习的工具，尽管大多数是以患者为中心的，并且不能支持学习型医疗保健系统所需的人口管理。登记处的设计就是为了做到这一点，但通常独立于机构的电子病历运行。我们建议通过构建现有的开源软件来改变这一点，以创建一个模块化的、通用的、可扩展的注册表，可以由电子病历填充。我们将在基于实践的improecarenow研究和改进计划中测试其支持QI和CE研究的能力。我们的具体目标是：（目标1）通过直接从电子健康记录中获取所需数据，使用我们开发的用于记录患者就诊期间临床数据的新工具提高收集数据的质量，并促进干预措施以提高儿童护理质量，从而增强现有的注册表，以支持儿科炎症性肠病（IBD）的学习医疗保健系统；（目标2）使用质量改进方法来实现增强的IBD注册功能，以便对IBD护理中心的人口进行管理，并增加患者对护理的参与；（目标3）使用增强登记的数据来比较儿科克罗恩病患者的替代治疗策略的有效性，特别关注生物制剂的时机；（目标4）为网络建立治理结构，使患者参与其中，并提供对隐私、机密性和数据访问以及科学和技术问题的监督。该项目将形成一个独特的社区，由儿童、家庭、临床医生、信息学家、QI专家和CE研究人员组成，他们通过学习医疗保健系统原则，共同努力改善患者的治疗效果。我们的长期目标是将这项工作扩展到致力于促进儿童健康的其他慢性病社区。

DESCRIPTION (provided by applicant): A learning healthcare system comprises a community of front-line clinicians, patients, and scientists who view each clinical encounter as an opportunity to learn and to improve patient outcomes. In its most advanced state, it combines comparative effectiveness (CE) research with quality improvement (QI) science to ensure the delivery of new knowledge at the point of care. Electronic health records have the potential to become the tool for learning at the point-of-care, although most are patient-focused and do not natively support the population management required by a learning healthcare system. Registries are designed to do this, but generally operate independently of institutional EHRs. We propose to change this by building upon existing open-source software to create a modular, versatile, and scalable registry that can be populated by EHRs. We will test its ability to support QI and CE research within the ImproveCareNow practice-based research and improvement initiative. Our specific aims are to: (Aim 1) enhance an existing registry to support a learning healthcare system for pediatric inflammatory bowel disease (IBD) by capturing needed data directly from electronic health records, improving the quality of collected data using new tools we have developed for recording clinical data during a patient encounter, and facilitating interventions to improve the quality of care for children; (Aim 2) use quality improvement methods to implement enhanced IBD-registry features to enable management of IBD care center populations and increase patient participation in care; (Aim 3) use data from the enhanced registry to compare the effectiveness of alternative treatment strategies for pediatric Crohn's Disease patients, with a special focus on timing of biologic agents; (Aim 4) develop governance structures for the network that engages patients and provides oversight of privacy, confidentiality, and data access, as well as scientific and technical concerns. The project will form a unique community of children, families, clinicians, informaticians, QI specialists, and CE researchers who work together to improve patient outcomes using learning healthcare system principles. Our long-term goal is to extend this work to other chronic disease communities devoted to advancing the health of children. PUBLIC HEALTH RELEVANCE: EHRs have the potential to anchor a learning healthcare system where each clinical encounter is an opportunity to learn and to improve clinical outcomes. We propose to link EHRs to disease-specific registries in a distributed network of pediatric healthcare providers and generate new evidence for the benefits and harms of different strategies and interventions to prevent, diagnose, and treat disease.