In Search of a Data-in-Once, Electronic Health Record-Linked, Multicenter Registry—How Far We Have Come and How Far We Still Have to Go

The learning health system is a framework in which new knowledge is translated into general clinical practice and clinical practice serves as the engine to generate new evidence and knowledge. One type of learning health system is an electronic health record (EHR)-linked multicenter registry. Significant investment has been made in recent years to spur the adoption of EHRs and to fund the creation of health information exchanges. Yet, given this investment, are we any closer to achieving the vision of a learning health system? What are the areas of success? What challenges remain? To answer these questions and using an EHR-linked multicenter registry as a model, we define a set of requirements that need to be met in order to achieve the goals of the learning health system. We then evaluate progress along each dimension by detailing our efforts to create an EHR-linked multicenter registry for ImproveCareNow, a quality improvement and research network focused on improving outcomes for children with inflammatory bowel disease (IBD).