files for states and the nation. These data, however, are largely anonymous and cross-sectional. As such, they do not allow assessment of change over time except for individual elements at the population level.
The Division of Services for Children with Special Health Needs of the MCHB recently began a new effort to develop comprehensive, community-based systems of care for children with special health care needs. As states develop systems of care, they are being asked to measure and monitor their progress in meeting specific goals and to build state capacity for data-based decision making. The MCHB has developed a standard definition for children with special health care needs and supported research used to develop a screening tool to identify them. The screener has been used in a survey using the State and Local Area Integrated Telephone Survey (SLAITS) platform and by the Consumer Assessment of Health Plans Survey used by Medicaid and commercial managed care organizations. This is a good example of the federal leadership required to establish standardized data collection protocols for states.
CDC has been the leader in defining standard definitions for key data registries and systems used to monitor health outcomes in states; these include definitions for HIV/AIDS, sexually transmitted diseases, birth defects, and cancers. CDC has also developed the National Electronic Disease Surveillance System (NEDSS), originally piloted in Nebraska and Tennessee, which establishes standardized data elements and can link with state systems to use state data to get national totals for specific indicators. However, data are retained and analyzed at the state level. NEDSS is important because the system is using a set of data and technology standards based on the Public Health Information Network to collect basic data from a variety of settings rather than requiring reports using standard software or hardware across states. While this makes it difficult to pool data at the national level, it provides advantages for states and anyone reporting data to the state. There are great expectations for NEDSS as a prototype to facilitate better aggregated and linked data in the future at the state and national levels. Although its design is intended for surveillance of infectious diseases, the approach could be readily used for assessment of children’s health over time and across groups as defined by the committee. Some states currently building child health tracking systems (e.g., Utah, Massachusetts, Tennessee, Washington) are using the NEDSS approach and standards.
The National Committee on Vital and Health Statistics, which advises the secretary of health and human services on national health information policy, presented the report of its Workgroup on the National Health Information Infrastructure (NHII) in November 2001 (U.S. Department of Health and Human Services, 2001a). The report, Information for Health: A Strategy for Building the National Health Information Infrastructure, envisions a process for building a 21st-century health information system, emphasizing the importance of an effective, comprehensive health information infrastructure that links all health decision makers, including the public. The heart of the plan is sharing information