STATUS: Active Project
Patient‑level data are essential to understanding and improving health outcomes. These data must be made available to researchers in a way that ensures the protection of patient privacy while providing sufficient granularity to allow meaningful research questions to be assessed. However, current laws and policies around the use of patient level data are nuanced and sometimes conflicting, creating confusion for researchers, providers, and patients.
PROJECT PURPOSE & GOALS
This is a collaborative effort between the Office of the National Coordinator for Health Information Technology (ONC) and Centers for Disease Control (CDC) to conduct research and create resources to improve the privacy of patients and their data.
The ONC project objectives are to:
Create a Privacy and Security Data Infrastructure Blueprint.
Conduct a Legal Analysis to Inform Development of an Ethical Framework.
Identify Mechanisms for Capturing Individual Consent and Preferences for Research.
The CDC project objectives are to:
Conduct an “as‑is” analysis of public health laws and ethical considerations that relate to the release and use of CDC public health and health surveillance data (environmental scan, analysis of findings, and gap analysis).
Prepare a final white paper of findings and recommendations for best practice practices for data release beyond CDC, and provide guidance to researchers interested in using CDC data for PCOR.
Convene a work group of public health legal and ethics experts to inform the “as‑is” analysis to provide a “view” of agency wide data use and report of findings.