affect children’s health. Data systems can also be used to communicate knowledge about children’s health to the public. Integrated data systems provide early information to identify areas of vulnerability, monitor health disparities, and detect manifestations of adverse effects on children’s health across time, across domains of health, or for a variety of subpopulations defined by geography, ethnicity, or other characteristics.
Integrated data systems with data linked at the individual level also allow individual children or groups of children to be followed longitudinally across datasets to better understand why a characteristic or problem develops in some children but not others, and they support epidemiological studies of the potential effects of certain health influences. Linked datasets from multiple service systems, such as public health, education, human services, child welfare, juvenile justice, and health care, enable particularly useful longitudinal analyses. Based on guidelines to protect privacy and confidentiality, there should be limited access to linked data systems for a range of purposes. For example, policy makers can forecast and monitor the effect of their policies on children; researchers can determine best practices for health, social, and education services; the particular impact of multiple health influences on children can be determined; and management of patient care can be improved.
A community can be empowered when it has information specific to its children. States and some communities collect a wealth of data about children and their health. If data at the state or community level are scattered among several agencies or departments, it is difficult for community groups to compile them. Community groups and local policy makers are much more likely to use data systems that combine administrative datasets from multiple state and community sources (without identifiers) and are easily accessible to the public. Making children’s data systems accessible on the Internet can enhance distribution and use by individuals outside government and the research community. The responsibility for providing much of these data is the public health department at the state and local levels. Since one of the three core functions of public health is assessment, data collection and dissemination is a major activity. The Institute of Medicine recommended in 1996 that the state health department be responsible for the provision of data. More specifically, within the public health department, the Title V maternal and child health program is mandated by federal law to be the lead on maternal and child health issues.
Advances in the systematic collection, analysis, and reporting of data have been made in recent years. Standardizing data definitions and collection methods is an important step in improving the value of data elements, datasets, and data systems and has been a priority of the National Center for Health Statistics (NCHS). Federal, state, and community programs have been encouraged to adhere to guidelines established by NCHS in order to improve the comparability of data. Without standardization, even sophisticated, integrated data systems cannot provide good information.