Building Modular Pediatric Chronic Disease Registries for QI and CE Research

描述(由申请人提供)：一个由一线临床医生、患者和科学家组成的学习医疗系统，他们将每一次临床接触视为学习和改善患者结果的机会。在其最先进的状态下，它结合了比较有效性(CE)研究和质量改进(QI)科学，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地点学习的工具，尽管大多数是以患者为中心的，本身并不支持学习医疗系统所需的人口管理。登记处的设计就是为了做到这一点，但通常独立于机构人力资源机构运作。我们建议通过建立现有的开源软件来改变这一点，以创建一个可由EHR填充的模块化、多功能和可扩展的注册表。我们将在ImproveCareNow基于实践的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捕获所需数据，增强现有的登记处，以支持儿科炎症性肠病(IBD)的学习保健系统，使用我们开发的用于记录患者就诊期间的临床数据的新工具，提高收集的数据的质量，并促进干预措施，以提高儿童的护理质量；(目标2)使用质量改进方法，实施增强的IBD登记处功能，以实现对IBD护理中心人口的管理，并增加患者对护理的参与；(目标3)利用来自增强登记的数据，比较儿童克罗恩病患者替代治疗策略的有效性，特别注重生物制剂的使用时机；(目标4)为网络建立治理结构，使患者参与进来，并对隐私、保密、数据获取以及科学和技术问题进行监督。该项目将形成一个由儿童、家庭、临床医生、信息学家、QI专家和CE研究人员组成的独特社区，他们共同努力，使用学习医疗系统原则来改善患者的预后。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。 公共卫生相关性：电子病历有潜力支撑一个学习的医疗保健系统，其中每一次临床接触都是学习和改善临床结果的机会。我们建议将EHR与儿科保健提供者分布式网络中的疾病特定登记处联系起来，并为预防、诊断和治疗疾病的不同战略和干预措施的好处和危害产生新的证据。

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.