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Protecting N3C Data

From the Short Course Syllabus

  • N3C Data Enclave Institutional Data Use Agreement (Confidentiality and Data Security)

    • Users agree to not attempt to re-identify or contact any individuals who are the subjects of the Data or any known living relatives unless required by law to maintain public health and safety.
    • Users agree not to attempt to use the Data to identify or contact any Data Contributors or healthcare providers unless such identification is needed for Data preparation and management purposes and only at the request of NCATS or required by law to maintain public health and safety.
    • Users agree to not photograph, create screenshots, nor download data viewed on the NCATS N3C Data Enclave. Furthermore, Users’ access to the NCATS N3C Data Enclave will be terminated after 1 year. Users’ access to their analyses and findings on the NCATS N3C Data Enclave may continue with DAC approval of DUR renewal.

  • N3C Code of Conduct

    • Make no attempt to identify institutions, communities or identifiable populations associated with particular N3C data; to re-identify or contact individuals, their relatives or relevant groups from whom data represented within the N3C Data Enclave were collected; or to generate information that could allow individual identities to be readily ascertained.
    • Maintain the confidentiality of the data accessible within the enclave and not distribute, provide access to, attempt to download or otherwise capture views of N3C data for use or disclosure to any entity or individual beyond those specified in the approved DUR.

  • No recording, hand copying and pasting, photographs/screenshots (or emailing of screenshots), verbal description of data, or sharing of access to data

    • Everything should stay within the N3C Data Enclave (we can look at any work in there)

  • Only share screen with those with same level access DUR (e.g., Level 2 de-identified) for in person or virtual (e.g., Zoom) meetings.

  • Be sure to lock your computer whenever you step away, even for a short period of time.

  • If not sure about something, ask the course organizers/instructors first!

  • Communication will be done using the #n3c-short-course Slack channel in the CD2H workspace:

    • Use for troubleshooting and questions during class (rather than Zoom chat)
      • Do not take or send photographs/screenshots or copy data (everything should stay within the N3C Data Enclave - we can look at any work in there)
    • Use for questions outside of class (avoid direct messages)