Building Modular Pediatric Chronic Disease Registries for QI and CE Research

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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.