Real-World Data for Healthcare Research in China: Call for Actions

This study aimed to provide an overview of major data sources in China that can be potentially used for epidemiology, health economics, and outcomes research; compare them with similar data sources in other countries; and discuss future directions of healthcare data development in China.

The study was conducted in 2 phases. First, various data sources were identified through a targeted literature review and recommendations by experts. Second, an in-depth assessment was conducted to evaluate the strengths and limitations of administrative claims and electronic health record data, which were further compared with similar data sources in developed countries.

Secondary databases, including administrative claims and electronic health records, are the major types of real-world data in China. There are substantial variations in available data elements even within the same type of databases. Compared with similar databases in developed countries, the secondary databases in China have some general limitations such as variations in data quality, unclear data usage mechanism, and lack of longitudinal follow-up data. In contrast, the large sample size and the potential to collect additional data based on research needs present opportunities to further improve real-world data in China.

Although healthcare data have expanded substantially in China, high-quality real-world evidence that can be used to facilitate decision making remains limited in China. To support the generation of real-world evidence, 2 fundamental issues in existing databases need to be addressed-data access/sharing and data quality.