February 27, 2002

The Honorable Tommy G. Thompson
U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C., 20201

Dear Secretary Thompson:

The National Committee on Vital and Health Statistics (NCVHS) is the statutorily designated committee to advise the Secretary of DHHS on health information policy. In this capacity, the Committee organized a panel on National Preparedness and the National Health Information Infrastructure (NHII) at its February 26, 2002 meeting. The panel discussion coincided with release of the Committee’s report, “Information for Health: A Strategy for Building the NHII”. Over the last year, we also have been monitoring the progress of the National Electronic Disease Surveillance System (NEDSS) and its contribution to the NHII. A fully developed and implemented NEDSS would enhance the nation’s ability to identify and respond to outbreaks of illness due to an act of terrorism or other causes.

We would like to commend the Department for leading the effort to upgrade our nation’s public health and disease surveillance systems. The electronic collection of disease information from the health care sector and analysis in the public health sector are key parts of our preparedness. We believe that the major commitment by the Administration to funding these efforts through the Centers for Disease Control and Prevention (CDC) bioterrorism cooperative agreements with states is an important step.

In our highly mobile society, outbreaks of illness are rarely contained within one political jurisdiction. Early identification of these outbreaks requires the collection and analysis of data from local, state, regional and national perspectives. This level of functionality requires that the implementation of NEDSS-based systems in each state be not only standards-based but interoperable. The CDC has made great strides in defining the national standards that should be incorporated into NEDSS, but the NCVHS believes that more work needs to be done to assure interoperability. NEDSS standards need to be specific and implemented in a consistent fashion. The implementation should be consistent within each component of NEDSS and from state to state. NCVHS is concerned that incompatible implementations may occur without clear leadership and guidance by the CDC.

Therefore we have the following recommendations:

1) The Centers for Disease Control and Prevention should fully specify the NEDSS standards. This should be accomplished in partnership with existing Standards Development Organizations (SDOs) and state and local public health agencies. For data elements and transactions that are not covered by existing SDOs, the CDC should develop clear standards and implementation guides with national professional organizations representing states, including the Association of State and Territorial Health Officials (ASTHO), the National Association of County and City Health Officials (NACCHO), the Council of State and Territorial Epidemiologists (CSTE) and others. Considering the urgent need to enhance our public health preparedness, adequate resources need to be committed to assure that these tasks are completed quickly.

2) The CDC should develop and implement a system of conformance testing for NEDSS standards. Implementation of standards-based systems is a complex and difficult process. Many decisions are made during system design and development that may impact the ability to share data in a useful and meaningful way with other states or the CDC. A NEDSS reference system should be established by the CDC, against which states should verify correct implementation of the standards and interoperability.

3) The CDC and Office of Public Health Preparedness (OPHP) should allocate resources to assure that ongoing technical assistance is available to states during the NEDSS development and implementation process. States vary in their ability and experience in implementing standards-based system development. Technical assistance that is readily available will assure timely help when critical design decisions are being made.

4) Implementation of NEDSS standards in development of state electronic disease surveillance systems and other federally funded public health information systems with conformance testing should be mandatory. Testimony on February 26, 2002, indicated that, while the standards will be strongly recommended, they will not be mandatory for the development and implementation of state-based electronic disease surveillance systems using OPHP and CDC cooperative agreement funds. We believe that, absent a mandate, some states will make design decisions that result in an inability to share important data with other states and the CDC. Adherence to the standards should not be optional.

5) Similar recommendations also apply to grants from the Health Resources and Services Administration.

NEDSS is an important development and will dramatically improve the ability of the public health system to respond to emerging infectious diseases caused by natural processes or terrorism. These recommendations are offered to improve the quality and timeliness of its implementation.

The NCVHS will continue to monitor the implementation of the health information component of national preparedness, NEDSS implementation and the NHII. We also stand ready to provide any assistance that you and the Department may need.



John Lumpkin, M.D., M.P.H.
Chair, National Committee on Vital and Health Statistics

Cc: HHS Data Council Co-Chairs