|Layer||Learn From Every Patient initiative ||PaTH clinical data research network initiative |
Goal: continuous quality improvement in clinical care for children with cerebral palsy.|
Measures: changes in healthcare utilization rates and related costs
Goal: informatics-supported infrastructure for cohort identification and data sharing for idiopathic pulmonary fibrosis, atrial fibrillation, and obesity.|
Measures: not discussed
|Scientific||12-month study of one cohort, within a series of learning projects for continuous quality improvement||
randomized trials with specific research questions informed by clinical data research experts and vetted by informatics group
|Organizational||Program team includes key clinical stakeholders, clinical and information technology teams||Steering Committee includes representatives from each site, three advisory committees (including patients), four working groups (research questions, information technology, methodology, regulations)|
Source: data fields and questions added to institution’s EHR.|
Data quality: ensured by database manager
Source: Complete set of longitudinal data about target populations taken from site EHRs.|
Standards: Standardized descriptions of data elements using established standards and vocabularies; use of HL7 by all participating health systems.
Quality: manual and automated monitoring by data engineers.
|Information technology||Existing EHRs and related infrastructure||Source data loaded onto centrally-maintained data warehouse; queriable through analytics interface|
|Ethics and security||No review board authorization required (all data collected appropriate for standard clinical care)||Not directly discussed; data transformation process includes de-identification prior to loading into warehouse|