included, and the existing technological NCHS infrastructure. The benefits will also vary depending on whether aggregated or linked data systems are developed, how the data are used, who has access to the data, and how many critical datasets are included. Expanded model demonstration projects would offer continued opportunities to develop comprehensive data systems and to estimate costs and benefits based on the types of data system and their intended uses.
The federal government could also advance the development of data systems by convening relevant federal, state, and community stakeholders to explore the range of privacy and confidentiality issues, including the sharing of individual data (with identifiers) among departments of government and to develop clear guidance related to privacy and confidentiality.
Several governors and mayors have recognized the value of appointing a Children’s Cabinet, a public health agency, or similar entity to coordinate and improve services influencing children’s health across multiple state departments and agencies. This same type of leadership and political will is needed to create data systems across departmental lines and to resolve funding and data sharing issues. States and localities will need the vision to see that these data systems have the potential to increase the effectiveness and efficiency of their services to children, provide data for accountability, and empower communities to act (see Box 6-7 for one state example). But this vision has to spread across the many departments and agencies that are involved in providing relevant services. A financial investment will be required for the development of any data system, and states and localities without an adequate infrastructure will require a greater investment. States might take a graduated approach. An initial first step is the enhancement of state public health web sites with aggregated health data. The next objective could be aggregated children’s data available on the Internet followed by the linkage of many of the state’s datasets on children for government and private research purposes. These three steps are well within the reach of all states within the next few years.
It is equally important for communities within states to evaluate child health. While it may not be feasible to collect every relevant data element at the census tract level or even the city or county level, states and communities should improve efforts to work together and share the financing of data collection efforts. Just as it can be more economical for states to enhance national surveys to get valid data for the county level, the same is true for communities that might want to expand either a national or state survey to meet their own needs. This could involve increasing the sample size to obtain data valid for a smaller geographic unit or adding new questions to an existing survey, as some communities do now using the Behavior Risk Factor Survey or the Youth Risk Behavior Survey.
State-level aggregated data that are available to the public on the Internet will