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National Committee on Vital and Health Statistics, Enhanced Protections for Uses of Health Data: A Stewardship Framework for 'Secondary Uses' of Electronically Collected and Transmitted Health Data (Report to the Secretary of the U.S. Department of Health & Human Services) (Dec. 21, 2007) (full-text).
This report and its recommendations were developed in response to a request from the Office of the National Coordinator for Health Information Technology (ONC) to address the benefits, sensitivities, obligations, and protections of uses of health data for quality measurement, reporting, and improvement; research; and other purposes that benefit the health of all Americans and the health care delivery system of the Nation.
The recommendations call for a transformation to enhanced protections for all uses of health data by all users, independent of HIPAA covered entity status. NCVHS proposes that all organizations and individuals with access to personal health data follow attributes of appropriate data stewardship. NCVHS recommendations describe the attributes of appropriate health data stewardship as including, but not limited to: accountability and chain of trust, transparency, individual participation, de-identification, security safeguards and controls, data quality and integrity, and oversight of data uses.