Development of an Electronic Health Record Format for Children

Electronic health records (EHRs) have typically been developed and implemented for an adult population. Missing functionality, inadequate implementation, issues with usability, and insufficiently trained users are some of the reasons why EHR systems to date generally have not optimally supported the care of children.  As such, organizations frequently need to make modifications to their EHRs to accommodate the unique medical and social needs of children and better support their care. 

This project, funded by the Centers for Medicare & Medicaid Services, developed an EHR format (Format) for children enrolled in Medicaid or the Children’s Health Insurance Program (CHIP). It contains the requirements for data elements, standards, usability, functionality, and interoperability for a pediatric EHR. It also provides guidance to users about the ideal functionality of EHRs for children. The targeted users of the Format include EHR developers and vendors, purchasers of EHR systems, Children’s Health Insurance Program Reauthorization Act (CHIPRA) demonstration grantees and their partners, State Medicaid agencies, and trade and advocacy organizations for children’s health. 

The objectives of this project were to:

• Conduct an environmental scan and gap analysis. 
• Develop an EHR format for children that can be used readily. 
• Package the EHR format in a way that facilitates broad incorporation into EHR systems.

The Format was informed by an environmental scan and gap analysis. The scope was limited to primary and general acute care for children, both well and sick, and did not include subspecialty care. A technical expert panel was involved throughout the project and included physician informaticists, physician and nursing professional organizations, children’s advocacy organizations, State Medicaid agencies, vendors, and Federal agency representatives. In addition, the project received input from a Federal workgroup that included representatives from the Administration for Children and Families, Agency for Healthcare Research and Quality, Centers for Medicare and Medicaid Services, the Health Resources and Services Administration, and the National Institute of Standards and Technology, among others. Two CHIPRA demonstration grantees, North Carolina and Pennsylvania, participated in the testing and evaluation of the Format.

The gap analysis identified 22 topic areas not adequately represented by current EHR systems, including growth data, newborn screening, and medication management in children. The format includes over 500 unique requirements within these 22 topic areas, all EHR system-neutral, allowing the Format to be compatible with existing and future EHR systems. Requirements were structured using a hierarchy standard developed for the HL7 EHR-System Functional Model.

Prototypes for an Annotated Growth Chart and Medication Dose Rounding were developed based on the Format. A conformance assessment of the requirements was conducted relative to several selected vendor products. A process was developed for a feedback and validation approach from key stakeholders.  Upon completion of the Format, the project team developed a number of documents to assist users of the Format including a user guide and FAQs.