Welcome letter for the Interagency Health Privacy Working Group

This memorandum is to welcome you to the Interagency Health Privacy Working Group and to describe the activities that we will undertake. The Working Group grows out of a request by Vice President Gore to Secretary of Health and Human Services Donna Shalala to lead an interagency effort to address a number of major policy issues in the area of health information, including the privacy protections necessary to assure careful and respectful use of individually-identifiable health information in an electronic environment. Secretary Shalala has asked me to take charge of privacy-related activities, and has placed a high priority on better coordination of privacy activities relating to health across Departments.

Enclosed are the memorandum from the Vice President and the letter from Secretary Shalala to the heads of the relevant agencies that describes our activity and seeks your help.

While our assignment from the Vice President is broad in scope, I believe that the most important contribution we can make at this time is to identify the privacy-related issues that arise particularly from the electronic environment of computerized records, networked information systems, and ubiquitous telecommunications, and to recommend policies to address those issues. There is a valuable body of thinking, policy, and legislation addressing health record confidentiality generally. It is important that this be examined in light of new ways of collecting, storing, and distributing health information, and that it be brought up-to-date to ensure effective protection of that information. I propose that we make that the first task of our group.

Among the types of problems in this category are the intertwined policy and technical issues regarding use and disclosure when clinical records are computerized, can be duplicated at low cost, can be accessed without being physically present, and can be searched based on any stated characteristic; the special problems of telemedicine; issues created when individuals carry with them health information about themselves; and issues about use and disclosure of information about providers when computerization permits ready profiling of provider activity.

Our group should be a true working group that can bring to bear the valuable experience that Federal agencies have had in establishing and operating systems with health information in electronic form. I hope that we can concentrate initially on an inventory of issues and problems, rather than articulation of formal policy positions from our agencies. Members Will be encouraged to identify others in their agencies who can contribute expertise on a one-time or continuing basis.

For our first meeting, I would ask that you come prepared for the following:

• to describe briefly the extent and type of computerization of health information in your agency, and interaction by computer with other, non-Federal entities; and
• to describe special problems or issues in use and disclosure of personal information that arose particularly because of computerization of information.

When we have heard this, we will be able to define a process that calls on the experience and expertise of your agencies to examine the issues systematically and to develop principles and recommendations.

Our first meeting will be held on Friday, August 11 from 9:00 to 11: 00 a.m., in my office, room 713F Hubert H. Humphrey Building, 200 Independence Avenue SW, Washington, DC. Please call my secretary, Lynda Gyles, at 202/690-7780, to let us know if you will be attending.

I would be happy to discuss our plans or to answer any questions You may reach me, also, at 202/690-7780, or through Internet at nhunter@ospag.ssw.dhhs.gov. If I am not available, you may contact John Fanning, in the Public Health Service, who is assisting with this project, at 202 690 5896, or through Internet at jfanning@oash.ssw.dhhs.gov.