Fragmentation has developed in surveillance systems in part because legal authority for surveillance rests with states and localities and they have not developed uniform standards for data elements, collection procedures, storage, and transmission. The lack of uniformity has made it difficult for states and localities to work collaboratively among themselves or with the private sector to develop more effective surveillance systems. Although The Future of Public Health recommended the development of a uniform national health data set (IOM, 1988), progress has been limited.
Requirements under the Health Insurance Portability and Accountability Act (HIPAA; P.L. 104-191) for the development and use of comprehensive new standards for the electronic transmission of health information may result in greater consistency of certain types of data. However, there is uncertainty about the scope of the rules under HIPAA, and state and local health departments must determine what portion of their electronic health information might be subject to the requirements established by HIPAA (ASTHO, 2001a, 2001b).
Another key factor shaping the development of surveillance systems is that, historically, investment in these systems has been largely categorical, resulting in fragmentation of surveillance efforts across the spectrum of infectious disease threats and other programs for other specific diseases and populations. An inventory of public health data projects and systems identified more than 200 separate DHHS data systems in seven broad programmatic areas (Boufford and Lee, 2001). The multiplicity of surveillance systems for food-borne illnesses illustrates the problem (see Box 3-3).
A lack of integration in federal data systems helps drive fragmentation at the state and local levels. Data collected in accordance with the specifications of separate federal programs often cannot be accessed at the local level because of differences in formats, definitions, classification systems, personal identifiers, or sampling strategies (Lumpkin et al., 1995). The fragmentation means that state and local public health agencies inevitably must spend time on duplicative data-reporting activities that drain already scarce staff resources (GAO, 1999a). The current combination of system incompatibility and lack of integration hinders the ability of program managers to know what information exists and how to access that information and hinders the ability of local health agencies to provide integrated care to their communities (Lumpkin et al., 1995). CDC's National Electronic Disease Surveillance System (NEDSS) is working to electronically integrate a number of surveillance activities; details can be found in the discussion of information systems later in this chapter.
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