Patient-led data sharing for clinical bioinformatics research: USCDI and beyond

The 21st Century Cures Act, passed in 2016, and the Final Rules it called for create a roadmap for enabling patient access to their electronic health information. The set of data to be made available, as determined by the Office of the National Coordinator for Health IT through the US Core Data for Interoperability expansion process, will impact the value creation of this improved data liquidity. In this commentary, we look at the potential for significant value creation from USCDI in the context of clinical bioinformatics research and advocate for the research community's involvement in the USCDI process to propel this value creation forward. We also describe 1 mechanism-using existing required APIs for full data export capabilities-that could pragmatically enable this value creation at minimal additional technical lift beyond the current regulatory requirements.

Automated summary

The 21st Century Cures Act and the Final Rules create a roadmap for patient access to electronic health information, with the data provided impacting the value creation of improved data liquidity. This commentary highlights the potential for significant value creation from US Core Data for Interoperability in clinical bioinformatics research, advocating for research community involvement in the USCDI process to drive this value creation forward. Additionally, a mechanism using existing APIs for full data export capabilities is described as a pragmatic way to enable value creation with minimal technical burden.