|TO:||HHS Data Council|
|RE:||Creation of the HHS Data Council|
The number and importance of data and privacy issues have grown enormously in recent years, with the growth in new information and communications technologies and their applications for health care. The increasing scrutiny of health care costs and HHS program costs, the rapidly changing private market, and the move to increase the States' and Indian Tribes' responsibilities for health and social services programs, have created new information needs and corresponding concerns for the privacy of health information. In November, 1994, 1 asked Nan Hunter and Judy Feder to lead a department-wide information policy committee, to handle key data and privacy issues that cut across all HHS OpDivs and StaffDivs. (See Memo dated January 17, 1995, attached.)
That committee has focused on REGO2 and on the directive I received from the Vice President, asking me to lead an inter-departmental effort in four health information system issues. (See Memo dated March 8, attached.) The committee has been successful in getting these important activities underway. The committee's activities have also highlighted the importance of this new approach to developing the Department's information system policy, moving away from categorical, program-specific activities to a more integrated and cohesive approach to these issues. We need a permanent, formal body, constituted to reflect the reorganized HHS structure, to address the full range of health and nonhealth data and privacy issues.
- developing a Department-wide data collection strategy, including coordination and consolidation of surveys.
- working with Department programs and policy makers, the NCVHS, the research community, states, the private sector, and others, so that data collected by HHS will meet the need of all users and be easily accessible.
- working toward consensus in data standards and privacy.
- serving as the Department's liaison to and contact point for the NCVHS determining the appropriate focus of the NCVHS over time and asking for issue specific reports from the NCVHS, monitoring the work of the NCVHS, making recommendations regarding NCVHS membership and rechartering.
- responding to data standards and privacy issues presented by the NCVHS and others.
- oversight of surveys and general statistical analysis.
- implementation of the Vice President's charge to lead an interagency effort in four areas of information system policy: data standards, privacy, telemedicine, and enhanced health information for consumers.
The Data Council replaces the existing department-wide information systems committee, and will take over all of that committee's responsibilities.
The Data Council consists of all Assistant Secretary and Agency Administrator level HHS officials who have a direct reporting relationship to me, and the new position of Senior Advisor to the Secretary on Health Statistics, who will be the Director of the National Center for Health Statistics. In addition, I will appoint a privacy advocate to serve on the Council. The Council will be co-chaired by the ASPE and a rotating OpDiv head.
Given the challenging nature of its agenda, the Council will rely on staff support from throughout the Department, coordinated by ASPE's data policy staff. I ask that agency heads cooperate fully by making appropriate appointments to the inter-agency working groups that will do much of the staff work involved.
I want to emphasize the importance of this endeavor, and of high-level participation. While some Council members might appoint representatives to attend meetings in their stead, those representatives should have the authority to speak for their principals. I expect all Council members to insure that their views are fully presented to the Council, so that I can assume that all views have been considered when Council recommendations come to me for decision.
Donna E. Shalala
Data Council Members
Mary Jo Bane, Assistant Secretary for Children and Families
June Gibbs Brown, Inspector General
Nelba Chavez, Administrator, SAMHSA
Peter Edelman, Acting Assistant Secretary for Planning and Evaluation
Bernice Freidlander, Acting Director, Office of Consumer Affairs
Dr. Clifton Gaus, Administrator, AHCPR
Fernando Torres-Gil, Assistant Secretary for Aging
Dennis Hayashi, Director, Office of Civil Rights
David Hohman Director, Office of International Affairs
John Callahan Assistant Secretary for Management and Budget
Dr. David Kessler, Commissioner, FDA
Jerry Klepner, Assistant Secretary for Legislation
Dr. Philip Lee, Assistant Secretary, Office of Public Health and Science
Harriet Rabb, General Counsel
Dr. David Satcher, Director, Centers for Disease Control and Prevention
Melissa Skolfield, Acting Assistant Secretary for Public Affairs
Ciro V. Sumaya, M.D., Administrator, HRSA
Michael H. Trujillo, M.D., M.P.N., Director IHS
Harold Varmus, Director, NIH
Bruce C. Vladeck, Administrator, HCFA