Patient-led data sharing for clinical bioinformatics research: USCDI and beyond |
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| Authors: | William J Gordon Daniel Gottlieb David Kreda Joshua C Mandel Kenneth D Mandl Isaac S Kohane |
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| Affiliation: | 1.Department of Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, USA;2.Department of Medicine, Brigham and Women’s Hospital, Boston, Massachusetts, USA;3.Mass General Brigham, Boston, Massachusetts, USA;4.Computational Health Informatics Program, Boston Children’s Hospital, Boston, Massachusetts, USA;5.Microsoft Healthcare, Redmond, Washington, USA |
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| 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. |
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| Keywords: | interoperability FHIR electronic health records |
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