On January 13, 2009, the United States Department of Health and Human Services (HHS) released an updated and improved version of the Surgeon General’s family health history portal. “My Family Health Portrait” is a web-based tool that makes it easier for consumers to assemble and share family health history information. “The tool is built on health information technology standards that make it more convenient for consumers and more useful for practitioners. It is ready for use in electronic health records,” said former HHS Secretary Leavitt.

In support of the release of the updated and improved version of “My Family Health Portrait,” HHS Office for Civil Rights published new Health Insurance Portability and Accountability Act (HIPAA) frequently asked questions (FAQs) related to family medical history. Individuals using the “My Family Health Portrait” tool to download, assemble, and transmit family history information may have questions about privacy and how such family history can be shared among health care providers. The new HIPAA FAQs are meant to address such questions.

The release of the new HIPAA FAQs comes on the heels of Leavitt’s keynote address to the Nationwide Health Information Network Forum, in which Leavitt announced key privacy principles and a toolkit to guide efforts to harness potential new technology and more effective data analysis, while protecting privacy.

Noting that “consumers shouldn’t be in a position to have to accept privacy risks they don’t want,” Leavitt articulated the following privacy principles:

  • Individual Access - Consumers should be provided with simple means to access and obtain their personal health information in a readable form and format.
  • Correction - Consumers should be provided with means to dispute the accuracy or integrity of their personal identifiable health information, and to have erroneous information corrected or to have a dispute documented if their requests are denied. Consumers also should be able to add to and amend personal health information in products controlled by them such as personal health records (PHRs).
  • Openness and Transparency -- Consumers should have information about the policies and practices related to the collection, use and disclosure of their personal information.
  • In addition, consumers should have reasonable opportunities to review who has accessed their personal identifiable health information and to whom it has been disclosed. Individual Choice -- Consumers should be empowered to make decisions about with whom, when, and how their personal health information is shared (or not shared).
  • Collection, Use, and Disclosure Limitation - It is important to limit the collection, use and disclosure of personal health information to the extent necessary to accomplish a specified purpose. Precautions must be taken to ensure that this personal health information is secured, deidentified when appropriate, limited in scope and protected wherever possible.
  • Data Integrity - Those who hold records must take reasonable steps to ensure that information is accurate and up-to-date and has not been altered or destroyed in an unauthorized manner. A process must exist in which, if consumers perceive a part of their record is inaccurate, they can notify their provider. Safeguards - Personal identifiable health information should be protected with reasonable administrative, technical, and physical safeguards to ensure its confidentiality, integrity, and availability and to prevent unauthorized or inappropriate access, use, or disclosure.
  • Accountability - Compliance with these principles is strongly encouraged so that Americans can realize the benefit of an electronic health information exchange.