JMIR Publications

ABSTRACT

Background:

As the importance of electrical personal health records (ePHR)-based platform for chronic disease management is emphasized, common data elements (CDE) developed to collect data with standardized protocols are emerging. Chronic kidney disease (CKD) is one of the diseases that continuity of care and long-term follow-up are important. Self-engagement and management using ePHR can be useful in improving CKD related outcomes.

Objective:

Our objective was to identify and characterize the CDE for non-dialysis chronic kidney disease (CKD) patients.

Methods:

Consensus recommendations for CKD-CDE were developed by reviewing previously established articles, existing registries for non-dialysis CKD, and consensus on various variables that nephrologists check when treating CKD patients. For the compliance method with a standard model for the CKD-CDE, we used the ASTM continuity of care record and ISO/IEC 11179. The created metadata of the CDE-CKD was changed into the database upon being verified according to the ASTM CCR/XML schema. This DialysisNET-CKD (DNET-CKD) was created as an iPad application.

Results:

The CKD-CDE was categorized as patient-level and healthcare provider-level data elements. Especially, patient-level data included self-check elements, which need patients’ self-reports, and elements that can be automatically using wearable monitoring devices and electronic personal health records. CKD-CDEs from this study were implemented in the DNET-CKD with a focus on visualization, graphics, images, statistics, and database so that both patients and physicians can easily find them.

Conclusions:

The recommended variables of DialysisNET-CKD have been compiled from a wide range of history, demographics, laboratory tests, and outcomes. We hope that these developed CDEs will facilitate the integration and manage data from both patients and hospitals, and help patients' awareness and providers' decision-making.