1. How might various federal, state, and local agencies collaborate in surveillance of cardiovascular and pulmonary disease data collection, determination of research priorities, and development of public policy?
  2. What degree of validation is needed for cardiovascular disease (CVD) and pulmonary events identified through records systems?
  3. Are there new initiatives that might be exploited for new national chronic disease surveillance efforts, such as:

a.   The Public Health Information Network (http://www.cdc.gov/phin/index.html), including BioSense, a real-time disease detection and monitoring system designed primarily for infectious disease surveillance (http://www.cdc.gov/phin/library/documents/pdf/111759_biosense2.pdf);

b.   The National Electronic Disease Surveillance System project to establish a network of interoperable systems for “national integrated surveillance” (http://www.cdc.gov/phin/library/documents/pdf/111759_NEDSS.pdf);

c.   The Food and Drug Administration’s (FDA’s) Sentinel System;

d.   Local community surveys; or

e.   Efforts to increase use of electronic medical records (EMRs) nationally?

10. Can any existing data sources, such as Veterans Administration systems, health maintenance organization networks, or the Department of Defense systems, be used?

11. What can be learned from chronic disease surveillance in other developed countries?

 

The committee interpreted its charge as entailing a fairly broad approach with a focus on developing the overarching framework and the infrastructure required to create such a framework. While the committee determined it could identify kinds of data necessary for a framework (e.g., behavioral risk factors), identifying the specific data elements and the ways in which those elements are to be measured, collected, and verified is at a much more detailed level of specificity and requires greater resources than those available to the committee.

In considering the extent to which the framework should focus on chronic diseases in general, the committee concluded that the focus, as stated in the charge, should be “primarily on cardiovascular and chronic lung disease.” An enlarged focus on chronic diseases would require an expanded committee, a lengthier study process, and additional resources that were not available. However, the committee resolved to devise a framework and infrastructure that could, to the extent possible, be applicable to other chronic diseases. The committee also recognized the rich history and accomplishments of existing surveillance resources, which can be leveraged in designing a national surveillance framework that would be timely, reliable, and comprehensive for current users of surveillance information.

EXISTING SURVEILLANCE EFFORTS

In health, surveillance systems are constructed to routinely provide information on the scope, magnitude, and cost of a health problem in order to regularly influence priority setting, program development, and evaluation of services or policies. While surveillance has been historically concentrated on notifiable1 conditions or diseases, more recent surveillance efforts have expanded to track chronic diseases (Goodman et al., 2006). But surveillance of these conditions is difficult because of the challenges of disease definition, ascertainment, and differences in access to care, changes in clinical practice, multiple care providers, and lack of perceived threat of disease transmission. Surveillance of chronic conditions is also complicated by the need to provide data from several distinct domains (e.g., environment, income, education, race, ethnicity, and genetics) whose interaction leads to disparities in health and health care. A uniform framework for a nationwide surveillance system for these chronic conditions

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1 A notifiable disease is “a disease that, by statutory requirements, must be reported to the public health authority in the pertinent jurisdiction when the diagnosis is made. A disease deemed of sufficient importance to the public health to require that its occurrence be reported to health authorities” (Last, 2001). The Council of State and Territorial Health Epidemiologists works with the CDC to regularly update the list of notifiable diseases.



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