ance Portability and Accountability Act and similar state laws provide the context for how data systems can be developed and used in the future. All states have procedures for how to obtain access to confidential information; these rules are followed internally within health departments for linking data between key surveillance systems. Unique identifiers that allow data for the same individual to be linked without that person’s identity revealed are often used when data are shared.

Two decades ago, the University of Miami undertook one of the earliest efforts to link data at the state level with financing from the Florida departments of education and health (personal communication, Fredia Wadley with Keith Scoot and Rachel Spanjer, 2003). The Florida Department of Education initiated the linking of datasets because it would help elucidate the problems of future cohorts of students and support better policies and planning to meet student needs. However, Florida is still one of the few states in which the education department shares its data with individual identifiers with another state agency (see Box 6-3).

Tennessee has been developing a data system on children over the past 5 years. The first phase aggregated datasets across five state-level departments serving children. The second phase linked the datasets with individual identifiers to allow case managers in the various state departments to access information on the Internet for their clients.1 Initially the information provided by each program was limited. Case managers could find out what other state services were being provided and whether other case managers were assigned to the same child, but they had to contact other relevant programs to gain more information. The final phase is being developed and is to contain a record of all state services and health care information for children in foster care.

Health providers who have been approved to access the system for their foster care patients will be able to view records for their clients and input specific diagnostic, treatment, and referral information. Although there are only approximately 10,000 children in state custody at any time in Tennessee and a total of 15,000 in an average year, these children present an enormous challenge to state and to health providers. Locating and making available social, education, and health records to those service and health providers attempting to make adequate assessments and plans for these vulnerable children has been a long-standing problem. A second challenge has been tracking these children as they receive multiple services and therapies and sometimes relocate to other regions of the state. The type of system being developed would not only help in resolving these two problems common among states but would also serve as a prototype for broader children’s health data systems (Urbano, 2001).

The Robert Wood Johnson Foundation All Kids Count initiative has a recommended approach to creating an integrated data system for the early years that grew out of efforts to develop and implement immunization registries. Rhode

1  

Internet access by the general public was not allowed.



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