ELECTRONIC HEALTH RECORDS DATA AND METADATA: Challenges for Big Data in the United States

This article, written by researchers studying metadata and standards, represents a fresh perspective on the challenges of electronic health records (EHRs) and serves as a primer for big data researchers new to health-related issues. Primarily, we argue for the importance of the systematic adoption of standards in EHR data and metadata as a way of promoting big data research and benefiting patients. EHRs have the potential to include a vast amount of longitudinal health data, and metadata provides the formal structures to govern that data. In the United States, electronic medical records (EMRs) are part of the larger EHR. EHR data is submitted by a variety of clinical data providers and potentially by the patients themselves. Because data input practices are not necessarily standardized, and because of the multiplicity of current standards, basic interoperability in EHRs is hindered. Some of the issues with EHR interoperability stem from the complexities of the data they include, which can be both structured and unstructured. A number of controlled vocabularies are available to data providers. The continuity of care document standard will provide interoperability in the United States between the EMR and the larger EHR, potentially making data input by providers directly available to other providers. The data involved is nonetheless messy. In particular, the use of competing vocabularies such as the Systematized Nomenclature of Medicine-Clinical Terms, MEDCIN, and locally created vocabularies inhibits large-scale interoperability for structured portions of the records, and unstructured portions, although potentially not machine readable, remain essential. Once EMRs for patients are brought together as EHRs, the EHRs must be managed and stored. Adequate documentation should be created and maintained to assure the secure and accurate use of EHR data. There are currently a few notable international standards initiatives for EHRs. Organizations such as Health Level Seven International and Clinical Data Interchange Standards Consortium are developing and overseeing implementation of interoperability standards. Denmark and Singapore are two countries that have successfully implemented national EHR systems. Future work in electronic health information initiatives should underscore the importance of standards and reinforce interoperability of EHRs for big data research and for the sake of patients.