Develop & Implement an Enhanced Registry


In order to support the ImproveCareNow Network, we needed to take our existing registry and enhance it.  We are developing a proof-of-concept, EHR-linked registry as a model of large scale data sharing, improvement, discovery and innovation for chronic diseases.  The Enhanced Registry, called ICN2, captures data directly from EHRs using a “data-in-once” process that records clinical data during a patient encounter; and can be reused for multiple purposes like population management, pre-visit planning, quality improvement and research.   The goals of the ICN2 Enhanced Registry are:

  • Data Sharing: We analyze data elements and evaluate for multiple purposes
  • Best Evidence Care: We drive out variation in care delivery to ensure that each child receives optimal care at every visit
  • Drive Discovery: We use “Smart Data” to improve clinical chronic illness care delivery, drive quality improvement and inform comparative effectiveness research

The ICN2 contains the standardized questions and data elements that comprise model care for children and adolescents with IBD.  This standardization enables the data elements to be collected during routine clinical workflows.  And through implementation, we will eliminate collecting registry data by chart abstraction and double data entry – thus increasing efficiency, reducing costs and accelerating progress towards the Institute of Medicine’s vision of a learning health system where the point of care drives clinical care, improvement and discovery.