Tracking Symptoms in New York

New York City has stopped waiting for doctors to fill out those little cards. Instead, the city is working on what it hopes will one day be a model of how to identify the outbreak of a disease in its earliest stages. More than two years ago, the New York City Department of Health and Mental Hygiene started gathering 911 call data for cases involving sickness and respiratory distress. Then, shortly after Sept. 11, the department also began collecting from emergency rooms what’s known as the "chief complaint" of incoming patients, such as fever, nausea or a persistent cough. This is the most likely health information to be entered into a computer because even if patient case files are not automated, insurance and admittance systems usually are. That information also includes a patient’s age, gender and ZIP code, but not his name, ethnicity or other personal data.

All the information comes in via secure FTP once or twice a day, sometimes just in ASCII format, with about 40 of the city’s 90 hospitals participating so far. "We said, ’Give us whatever you have, and we’ll put it in a common form for analysis,’" says Ed Carubis, CIO of the New York City Health Department. "We didn’t force them to use a certain data standard or make them jump through hoops because what we really wanted was participation."

Using that information, public health officials can now identify the start of flu season two weeks before the trend shows up in laboratory results, allowing them to get a jump on awareness campaigns. The department has also started gathering information about certain kinds of prescription and over-the-counter drug sales (from at least one major pharmacy chain) and absentee rates (from a few major employers in the city).

Will the city start tracking sales of orange juice and Kleenex next? Carubis can’t be sure because the health department is still trying to figure out how, exactly, to extract meaning from pharmacy sales and absentee rates. (What red flag goes up when Maalox is on sale?) He also won’t say which pharmacy or employers are sharing numbers with the city. That probably has something to do with the fact that this kind of system, frankly, gives some people the creeps. Privacy advocates wonder how useful this kind of information can really be and what further invasions of privacy it might lead to.

For one researcher, New York’s fledgling surveillance project is just "No. 47" on a spreadsheet of projects. John McLamb has been trying to pull together a comprehensive list of all the national, state and local bioterrorism initiatives currently being attempted by health departments, universities, professional associations and even the Department of Defense. McLamb, who is director of informatics for emergency medicine at the University of North Carolina at Chapel Hill, is doing the work for HIMSS’s group on bioterrorism not at the bequest of any federal agency.