Health information privacy and syndromic surveillance systems

The development of syndromic surveillance systems to detect potential terrorist-related outbreaks has the potential to be a useful public health surveillance activity. However, the perception of how the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule applies to the disclosure of certain public health information might cause substantial delays, extra work, and obstacles to obtaining necessary data, affecting the ability of state and local health departments to implement syndromic surveillance systems within their jurisdictions. To assess this effect, a multiple-question survey asked state epidemiologists and terrorism-preparedness coordinators to share their experiences regarding patient confidentiality and HIPAA Privacy Rule requirements when implementing syndromic surveillance systems. Because little has been published on this topic, the survey instrument was designed to be exploratory and hypothesis-generating rather than hypothesis-testing. This assessment summarizes the results of the first known survey on syndromic surveillance systems targeted to state terrorism-preparedness managers and state epidemiologists.