Literature DB >> 34279631

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

William J Gordon1,2,3, Daniel Gottlieb1,4, David Kreda1, Joshua C Mandel1,4,5, Kenneth D Mandl1,4, Isaac S Kohane1.   

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.
© The Author(s) 2021. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Entities:  

Keywords:  FHIR; electronic health records; interoperability

Mesh:

Year:  2021        PMID: 34279631      PMCID: PMC8449625          DOI: 10.1093/jamia/ocab133

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   7.942


  7 in total

Review 1.  Current Applications and Future Impact of Machine Learning in Radiology.

Authors:  Garry Choy; Omid Khalilzadeh; Mark Michalski; Synho Do; Anthony E Samir; Oleg S Pianykh; J Raymond Geis; Pari V Pandharipande; James A Brink; Keith J Dreyer
Journal:  Radiology       Date:  2018-06-26       Impact factor: 11.105

2.  National health information technology priorities for research: A policy and development agenda.

Authors:  Teresa Zayas-Cabán; Kevin J Chaney; Donald W Rucker
Journal:  J Am Med Inform Assoc       Date:  2020-04-01       Impact factor: 4.497

3.  The "All of Us" Research Program.

Authors:  Joshua C Denny; Joni L Rutter; David B Goldstein; Anthony Philippakis; Jordan W Smoller; Gwynne Jenkins; Eric Dishman
Journal:  N Engl J Med       Date:  2019-08-15       Impact factor: 176.079

4.  SMART on FHIR: a standards-based, interoperable apps platform for electronic health records.

Authors:  Joshua C Mandel; David A Kreda; Kenneth D Mandl; Isaac S Kohane; Rachel B Ramoni
Journal:  J Am Med Inform Assoc       Date:  2016-02-17       Impact factor: 4.497

5.  Consumer-Mediated Data Exchange for Research: Current State of US Law, Technology, and Trust.

Authors:  Yiscah Bracha; Jacqueline Bagwell; Robert Furberg; Jonathan S Wald
Journal:  JMIR Med Inform       Date:  2019-06-03

6.  Push Button Population Health: The SMART/HL7 FHIR Bulk Data Access Application Programming Interface.

Authors:  Kenneth D Mandl; Daniel Gottlieb; Joshua C Mandel; Vladimir Ignatov; Raheel Sayeed; Grahame Grieve; James Jones; Alyssa Ellis; Adam Culbertson
Journal:  NPJ Digit Med       Date:  2020-11-19

7.  Doctors Routinely Share Health Data Electronically Under HIPAA, and Sharing With Patients and Patients' Third-Party Health Apps is Consistent: Interoperability and Privacy Analysis.

Authors:  Mark Savage; Lucia Clara Savage
Journal:  J Med Internet Res       Date:  2020-09-02       Impact factor: 5.428

  7 in total
  1 in total

1.  Climate change, security, privacy, and data sharing: Important areas for advocacy and informatics solutions.

Authors:  Suzanne Bakken
Journal:  J Am Med Inform Assoc       Date:  2021-09-18       Impact factor: 7.942

  1 in total

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