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ONC publishes Legal and Ethical Architecture for PCOR Data, authored by Health Information & the Law team

HealthInfoLaw team members Jane Hyatt Thorpe, Lara Cartwright-Smith, Elizabeth Gray, and Marie Mongeon authored the Legal and Ethical Architecture for patient-centered outcomes research (PCOR) Data, published by the Office of the National Coordinator for Health Information Technology (ONC). The full brief is available through the Health Information & the Law website here and through ONC's website here; access to each individual chapters is available here and through the links listed below.  
The Architecture is a collection of tools and resources that help researchers and others navigate an overview of the legal requirements related to data use, sharing, and disclosure for patient-centered outcomes research (PCOR).  Specifically, the Architecture:

  • Provides a common structure and model for the analysis of legal requirements and ethical consideration and responsibilities in research, particularly PCOR;
  • Supports PCOR by illustrating pathways to collect and share data for research that is in compliance with relevant federal laws and regulations and in consideration of state law; and
  • Supports a culture of trust among stakeholders by applying meaningful and appropriate privacy and security parameters.

The Architecture consists of the following five chapters and five appendices: