Patient-led data sharing for clinical bioinformatics research: USCDI and beyond. (19th July 2021)

• Record Type: Journal Article
• Authors: Gordon, William J; Gottlieb, Daniel; Kreda, David; Mandel, Joshua C; Mandl, Kenneth D; Kohane, Isaac S
• Is Part Of: Journal of the American Medical Informatics Association. Volume 28:Number 10(2021)
• Page Start: 2298
• Page End: 2300
• Publication Date: 2021-07-19
• Subjects: interoperability -- FHIR -- electronic health records; Medical informatics -- Periodicals; Information Services -- Periodicals; Medical Informatics -- Periodicals; Médecine -- Informatique -- Périodiques; Informatica; Geneeskunde; Informatique médicale; Computer network resources; Electronic journals; 610.285
• DOI: 10.1093/jamia/ocab133
• Languages: English
• ISSNs: 1067-5027

Abstract

Abstract: 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.