The ACC, along with the American Heart Association (AHA), has developed the first extensive data dictionary, with data elements and definitions, specifically for the use in the outpatient domain of pediatric and congenital cardiology. The 2017 AHA/ACC Key Data Elements and Definitions for Ambulatory Electronic Health Records in Pediatric and Congenital Cardiology published on July 14 in the Journal of the American College of Cardiology.

The need for a master set of data elements and definitions is of topical interest for the pediatric and congenital heart disease clinician where data sharing is critical to identify best practices, develop evidence–based guidelines and determine statistical significance in patient populations. In contrast to adult cardiac disease where there is a large population of patients who experience a more homogenous set of disease processes, there is a wide range of disease processes across a relatively small set of patients in pediatric and congenital heart disease.

The writing committee explains the challenges in getting to outcome measures in pediatric cardiology and cardiac surgery. There are many obstacles within standardizing and sharing data in pediatric cardiac surgery — including variation in surgical techniques and skills, variations in perioperative care, variation in underlying anatomy, adequate risk stratification, lack of natural history of unoperated patients in the present era and insufficient patient numbers from which to draw statistically significant conclusions.

The writing committee identified pediatric and congenital terms for electronic health records (EHR) – history of present illness, risk factors, past medical history, physical examination and common cardiac diagnoses. They suggest the need to compile through the EHR the collective–comparative needs of the many clinical, medical and surgical domains in the care of pediatric and congenital heart disease patients. This approach covers the cardiology clinic, cardiac diagnostic imaging, interventional, cardiac critical care and cardiac care programs.

"We see this plan as a first step toward achieving EHR data exchange for the continuity of clinical care of the pediatric and congenital heart disease patient," the committee writes. "As for future steps, we see the need for aligning the ACC and AHA pediatric data set to the adult data set and for aligning the ACC and AHA pediatric data set to U.S. Meaningful Use data standards. To do so, immediate next steps for the Task Force will involve further mapping of existing clinical data registries and clinical domain needs to better understand issues around common data standards, overlaps, and gaps in data content."