States, feds still struggle to share health information

Ever since the threat of an outbreak of anthrax or avian flu entered the national consciousness, state health departments have been working overtime to develop early warning disease surveillance systems. However, technical and policy gaps remain in the patchwork of systems that send data about disease outbreaks to national repositories, such as the Centers for Disease Control and Prevention’s National Electronic Disease Surveillance System (NEDSS). A recent report underscored those gaps. The fifth annual study by the nonprofit Trust for America’s Health, titled “Ready or Not? Protecting the Public’s Health from Disease, Disasters and Bioterrorism,” listed 12 states with surveillance systems that are incompatible with NEDSS. Those states include Alaska, Arizona, California, Connecticut and Minnesota. The issues include data formats, concerns about privacy and the tension that flares whenever the federal government imposes requirements on state officials without offering funding. “The feds are preparing for [health emergencies], but it’s the locals who, if the deal goes down, will have the spotlight on them,” said David Siegrist, a senior research fellow at the Potomac Institute, a think tank that focuses on technology and national security. Some states have launched sophisticated surveillance systems that detect unusual health problems or diseases occurring in unexpectedly high volumes. The systems sift through data from labs, hospital emergency rooms, physician practices and pharmacies looking for anomalies. In Indiana, Health Data Center officials routinely share information with CDC to help coordinate regional response efforts, said Roland Gamache, the center’s director. The challenge in the Hoosier state is sharing data that arrives on a variety of forms and in many formats. Health Level 7, a standard for formatting medical data, works well for symptom and geographic information, Gamache said. But other data, such as lab results, often start out with proprietary codes based on the preferences of individual software vendors. Questions also arise about whether to notify local or federal health authorities first when an outbreak occurs. Gamache advocates for the traditional approach of alerting local authorities first. “There’s a lot of work that needs to be done revising the regulations that surround public health reporting,” said Dr. J. Marc Overhage, director of medical informatics at the Regenstrief Institute, a health research organization in Indiana. Officials “need to monitor the health of the population, and they need to intervene on certain patients. The laws haven’t necessarily caught up with the electronic world yet.”