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- November 18, 2020 - Stakeholders and healthcare professionals across the country developed 10 patient data sharing principles. These principles intend to help guide health organizations and universities toward the appropriate use of data sharing to boost patient care, research, and innovation, according to an article published in the Journal of the American Medical Informatics Association (JAMIA).
- Stakeholders created these 10 principles to maintain the ethics and responsibilities of patient data sharing.
- ENSURE DATA SHARING SUPPORTS THE ORGANIZATION’S MISSION
- AVOID FINANCIAL COMPENSATION FOR DATA SHARING
- USE MINIMUM DATA ELEMENTS, DEIDENTIFIED DATA
- ESTABLISHING EXPIRING AND NONEXCLUSIVE DATA SHARING AGREEMENTS
- DATA OWNERSHIP CANNOT BE TRANSFERRED OR REDISTRIBUTED
- RESEARCHERS SHOULD NEVER REIDENTIFY DEIDENTIFIED DATA
- DO NOT MIX PREDETERMINED PATIENT DATA WITH OUTSIDE DATA SETS
- PROVING TRANSPARENCY WITH STAKEHOLDERS
- MAINTAINING TRANSPARENCY WITH CONFLICTS OF INTEREST
- DEVELOPING A DATA SHARING REVIEW COMMITTEE