In 1995, in response to a request from the Vice-President of the United States of America, the Department of Health and Human Services assumed a leadership role in addressing four major issues surrounding the use of the National Information Infrastructure to advance health care and the public health: (1) telemedicine; (2) health data privacy; (3) health data standards; and (4) consumer access to health information. One specific health data privacy objective is the identification and dissemination of information about current best practices for ensuring the confidentiality of electronic health data. This bibliography of information sources that provide concrete guidance on the policies, procedures, and technologies useful in safeguarding electronic health data is a first step toward that objective. Although the bibliography contains many useful references, the literature search conducted to produce it has confirmed that published information about how to protect electronic health data is fragmented and incomplete. Many institutions are currently addressing the need for comprehensive policies and procedures for safeguarding electronic health, but, to date, few institutional documents have been completed and released.
Materials cited in this bibliography have been one source of input to a study of "best practices" for protecting the confidentiality of electronic health care data that is currently being undertaken by the Computer Sciences and Telecommunications Board of the National Research Council, under the chairmanship of Paul Clayton, Ph.D., Columbia-Presbyterian Medical Center. Funded by the National Library of Medicine and the Warren G. Magnuson Clinical Center, National Institutes of Health, DHHS, the study is also collecting data through a series of site visits to institutions with electronic health information systems. Its final report, scheduled for release by January 1997, will bring us a step closer to the goal of developing practical and coherent guidelines for protecting the confidentiality of electronic health data.
Nan D. Hunter
Deputy General Counsel
U.S. Department of Health and Human Services
Chair, Interdepartmental Health Privacy Working Group