Using electronic health record data to establish a chronic kidney disease surveillance system in China: protocol for the China Kidney Disease Network (CK-NET)-Yinzhou Study

Abstract

Introduction: Chronic kidney disease (CKD) is an important public health problem worldwide. However, there are few active disease surveillance systems for it. The China Kidney Disease Network (CK-NET) was established as a comprehensive surveillance system for CKD using various data sources. As part of this, the proposed CK-NET-Yinzhou study aims to build a regional surveillance system in a developed coastal area in China to obtain detailed dynamic information about kidney disease and to improve the ability to manage the disease effectively.

Methods and analysis: Yinzhou is a district of Ningbo city, Zhejiang province. The district has a population of more than 1 million. By 2016, 98% were registered in a regional health information system that started in 2009. This system includes administrative databases containing general demographic characteristics, health check information, inpatient and outpatient electronic medical records, health insurance information, disease surveillance and management information, and death certificates. We will use longitudinal individual electronic health record data to identify people with CKD by repeated laboratory measurements and diagnostic codes. We will also evaluate the associated risk factors, prognosis and disease management. An intelligent clinical decision support system (CDSS) will be developed based on clinical guidelines, domain expert knowledge and real-world data, and will be integrated into the hospital information system.

Ethics and dissemination: The CK-NET-Yinzhou study has been reviewed and approved by the Peking University First Hospital Ethics Committee. Privacy of local residents registered with the health information system will be tightly protected through the study process. The findings of the study will be disseminated through peer-reviewed journal articles, posters and presentations in national and international scientific conferences, as well as among local practitioners through the CDSS.

Keywords: chronic kidney disease; clinical decision support system; electronic health record; surveillance system.