The focus of the Privacy and Security Framework for Patient-Centered Outcomes Research (PCOR) project is to develop tools and resources that address the many privacy and security-related legal and policy issues that affect use of data for various types of PCOR.
The project consists of two initiatives:
- The Legal and Ethical Architecture for PCOR Data (Architecture), guides readers through the responsible use and protection of electronic health data for PCOR. The Architecture was informed by stakeholder input and discussion. Artifacts of this work can be found here:
- 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, which remains underway, will also identify, test and validate technical standards that support an individual’s consent preferences.