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This chapter focuses on the fundamentals of data presentation for a birth defects surveillance program. A birth defects research program will have needs that go beyond what is addressed in this chapter. Readers are referred to the references and technical appendices in this chapter for additional information. The reader may also wish to refer to Chapter 8 (Statistical Methods) of The Surveillance Guidelines for more in-depth treatment of some of the topics touched upon in this chapter. Finally, the Members Only section of the National Birth Defects Prevention Network (NBDPN) website will be posting materials on more advanced aspects of data presentation as they become available.The Surveillance Guidelines for more in-depth treatment of some of the topics touched upon in this chapter.
Collecting data for data’s sake wastes precious resources. There is no good reason to collect data unless we intend to use them, generally to inform someone in a position to do something about the story our data tell.
Surveillance data in particular are intended for use in accomplishing the purposes and objectives of the surveillance program. In Chapter 1 of The Surveillance Guidelines we discussed the five major purposes of birth defects surveillance and their related objectives, as presented below.
- Epidemiologic. Epidemiologic objectives include developing timely baseline birth defects rates, monitoring trends and relationships to environmental factors, performing cluster investigations, and providing a basis for ecologic and etiologic studies
- Planning and prevention. Planning and prevention objectives include providing data for services planning, providing a basis for prevention strategies, and evaluating the efficacy of preventive services and programs.
- Educational and social. Educational and social objectives include informing the public about public health importance, informing parents about resources and care facilities, providing data for studies of economic impact, and providing data for follow-up studies of long-term effects.
- Healthcare and human services. Healthcare and human services objectives include referring children to services and resources and evaluating services utilization.
- Clinical. A clinical objective is providing the basis for clinical research.
Of course, not all surveillance programs pursue all of these purposes and objectives, but every program pursues some combination of them, and all collect data as a means to achieve them.
In order to fulfill the objectives of a birth defect surveillance program in all of these core areas, data must be collected in a complete, accurate, and timely manner. They must also be processed and interpreted in a way that ensures the availability of useful information to those with the responsibility to carry out specific activities that meet the program’s objectives. Under some circumstances, this is relatively straightforward. For example, if a programmatic objective is to connect babies with specific birth defects and their families with appropriate medical and social services, then data collected on diagnosis and parent contact information immediately provide the information needed to initiate an appropriate referral. Frequently, however, there is a need to aggregate, analyze, and interpret data and subsequently present the resulting information to a variety of partners capable of taking necessary action. It is this latter more complex process that is the focus of this chapter.
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