PCOR Privacy and Security Research Scenario Initiative and Legal Analysis and Ethics Framework Development Home

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Initiative Overview

The aim of this initiative is to determine how health information derived from a wide variety of data sources can be used for PCOR and comparative effectiveness research (CER), consistent with principles of ethics and legal and regulatory requirements related to patient consent, privacy, and autonomy.

• Phase 1:
• Develop 15-20 research data use scenarios that pertain to PCOR and CER
• Phase 2:
• Assess the legal, regulatory, and policy environment governing the use of health information for PCOR/CER
• Develop a legal and ethics framework for protecting patient privacy during conduct of PCOR/CER

As a member of the stakeholder group, you will participate in the activities related to Phase 1, including:

1. Identifying research data use scenarios that are patient-centric and encompass PCOR and CER;
2. Identifying necessary policies and requirements to enable data use in research;
3. Defining the gaps and needs in policies and ethical and legal requirements; and
4. Identifying instances where technical components intersect policy requirements, referencing relevant technical specifications as needed.

Project Contacts

Please reach out to the contacts below if you have any questions about the initiative.

Meeting Schedule

*NOTE: All times below are in Eastern Standard Time.