On December 15, 2008, the Office of the National Coordinator for Health Information Technology of the U.S. Department of Health and Human Services (HHS) published its 11 page report: Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information. The eight principles in this report underpin the HIPAA Administrative Simplification Privacy and Security Rule standards, provide a foundation of the Privacy provisions of the HITECH Act in the American Recovery and Reinvestment Act of 2009, signed by President Obama on February 17, 2009, and are a key objective of proposed 2011 Objective recommendations for Meaningful Use published by HHS’ Health IT Policy Committee on June 16, 2009. The Framework and Meaningful Use documents are available here.
In this series of postings, we reproduce—one at a time—Level 1 and Level 2 descriptions of the eight principles. A Level 1 (L1) description is a “short title and concise statement,” and a Level 2 (L2) description is a “short explanation that further elaborates on the principle, what it is designed to do, and its parameters.”
The fourth of the eight principles is:
(L1) INDIVIDUAL CHOICE. Individuals should be provided a reasonable opportunity and capability to make informed decisions about the collection, use, and disclosure of their individually identifiable health information. [p. 8]
(L2) The ability of individuals to make choices with respect to electronic exchange of individually identifiable health information concerning them is important to building trust. Persons and entities that participate in a network for the purpose of electronic exchange of individually identifiable health information should provide reasonable opportunities and capabilities for individuals to exercise choice with respect to their individually identifiable health information. The degree of choice made available may vary with the type of information being exchanged, the purpose of the exchange, and the recipient of the information. Applicable law, population health needs, medical necessity, ethical principles, and technology, among other factors, may affect options for expressing choice. Individuals should be able to designate someone else, such as a family member, caregiver, or legal guardian, to make decisions on their behalf. When an individual exercises choice, including the ability to designate someone else to make decisions on his or her behalf, the process should be fair and not unduly burdensome.