The Veterans Health Administration (VHA) Office of Connected Care (OCC) established the Patient Generated Health Data (PGHD) Code System in order to address issues with the consistent use and coding of terms related to data created, recorded or gathered electronically by or from Veterans, beneficiaries or their authorized delegates outside the clinical health care setting to help address health concerns. The proper terminology coding of this data is paramount to ensuring a consistent and correlated understanding of the data collected and how it should be assessed. Given the expanded proliferation of Internet of Things (IoT) wearable devices that perform monitoring both continuously and in relation to certain activities, it is important to ensure PGHD metadata properly frames the type of data collected, as well as the conditions surrounding collection for clarity in use. The lack of specific terminology codifications supporting data collected from IoT devices facilitated the need for this Code System, specifically to remove confusion around terms specific to IoT devices for PGHD.

How the Code System is Applied

The use of the va-pghd-codesystem is intended for and has been applied to the PGHD Fast Healthcare Interoperability Resource (FHIR) Application Programming Interface (API) where data is obtained from a variety of IoT devices or specialized applications supporting patient engaged personal health monitoring and care. The terms created to support additional codes missing from existing published code systems allows application against patient observable FHIR data for consistency. While intended for VA use exclusively to address lacking terminology code systems supporting PGHD, this code system could potentially be adopted by other organizations to address terminology standardization issues.

Stewardship and Governance

The VHA Office of Connected Care governs and maintains the VHA PGHD Code System as PGHD data stewards and maintainers of the supporting FHIR API. Terminology codifications related to PGHD are reviewed and added when it is determined no codification exists within code systems produced by medical terminology standards organizations, such as LOINC or SNOMED CT. Versioning will be applied when there is a semantic need based on significant changes to the code system contents, such as addition, revision, or deprecation of terms. Where terms are introduced specific to PGHD within medical terminology code systems, deprecation of existing terms within this code systems should be expected. However, current as well as previous versions of this code system shall remain published within the same Terminology System API.