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Building Data Infrastructure to Support Patient Centered Outcomes Research (PCOR)

Privacy and Security Framework for PCOR (PSP)

Established under the ONC Office of the Chief Privacy Officer, this project is developing a legal and ethical framework and corresponding technical and operational conceptual architecture to address the many privacy and security-related legal and policy issues that affect use of data for various types of research that include PCOR and CER.  

The project consists of two initiatives:

  • The “PCOR Privacy and Security Research Scenario Initiative and Legal Analysis and Ethics Framework,” will develop research data use scenarios based on stakeholder input and analyze legal and ethical requirements and gaps to create a framework that will guide the responsible use and protection of electronic health data for PCOR.
  • The “Patient Choice Technical Project,” will harmonize existing technical mechanisms to enable interoperable exchange of patient consent for basic and granular choice for research and treatment, payment, and healthcare operations. This project will also identify, test and validate technical standards that support an individual’s consent preferences.

To learn more about either initiative or to participate, please visit:

PCOR Privacy and Security Research Scenario Initiative and Legal Analysis and Ethics Framework
The Patient Choice Technical Project