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[This article was written by a pseudonymous reader who calls him/herself Enigma Foundry. I’m publishing it here because I think other readers would find it interesting. – Ed Felten]

The recent posts about 21st Century Wiretapping described a government program which captured, stored, filtered and analyzed large quantities of information, information which the government had not previously had access to without special court permission. On reading these posts, it had struck me that there were other government programs that are in the process of being implemented that will also capture, store, filter and analyze large quantities of information that had not been previously available to governmental authorities.

In contrast to the NSA wiretap program described in previous posts, the program I am going to describe has not yet generated any significant amount of public controversy, although its development has taken place in nearly full public view for the past decade. Also, unlike the NSA program, this program is still hypothetical, although a pilot project is underway.

The systems that have been used to detect disease outbreaks to date primarily rely on the recognition and reporting of health statistics that fit recognized disease patterns. (See, e.g., the summary for the CDC’s Morbidity and Mortality weekly Report.) These disease surveillance systems works well enough for outbreaks of recognized and ‘reportable’ diseases which, by virtue of having a long clinically described history, have distinct and well-known symptoms and, in almost all cases, definitive tests exist for their diagnosis. But what if an emerging infectious disease or a bio-terrorist attack used an agent that did not fit a recognized pattern, and therefore there existed no well-defined set of symptoms, let alone a clinically meaningful test for identifying it?

If the initial symptoms are severe enough, as in the case of S.A.R.S., the disease will quickly come to light. (Although it is important to note that that did not happen in China, where the press was tightly controlled) If the initial symptoms are not severe, however, the recognition that an attack has even occurred may be delayed many months (or using certain types of agents, conceivably even years) after the event had occurred. To give Health Authorities the ability to see events that are outside the set of diseases that are required to be reported, the creation of a large database, which would collate information such as: workplace and school absenteeism, prescription and OTC (over the counter) medicine sales, symptoms reported at schools, numbers of doctor and Emergency Department visits, even weather patterns and veterinary conditions reported could serve a very useful function in identifying a disease outbreak, and bringing it to the attention of Public Health Authorities. Such a data monitoring system has been given the name ‘Syndromic Surveillance,’ to separate it from the traditional ‘Disease Surveillance’ programs.

You don’t need to invoke the specter of bioterrorism to make a strong case for the value of such a system. The example frequently cited is a 1993 outbreak in Milwaukee of cryptosporidium (an intestinal parasite) which eventually affected over 400,000 people. In that case, sales of anti-diarrhea medicines spiked some three weeks before officials became aware of the outbreak. If the sales of OTC medications had been monitored, perhaps officials could have been alerted to the outbreak earlier.

Note that this system, as currently proposed does not necessarily create or require records that can be tied to particular individuals, although certain data about each individual such as place of work and residence, occupation, recent travel are all of interest. The data would probably tie individual reports to census tract, or perhaps census block. So the concerns about individual privacy being violated seem to be less then in the case of the NSA data mining of telephone records, since the information is not tied to an individual and the type of information is very different from that harvested by the NSA program.

There are three interesting problems created by the database used by a Syndromic Surveillance system: (1) The problem of False Positives, (2) Issues relating to access to and control of the data base & (3) What to do if the Syndromic Surveillance system actually works.

First with regard to the false positives, even a very minor rate error rate can lead to many false alarms, and the consequences of a false alarm are much greater than in the case of the NSA data filtering program:

For instance, thousands of syndromic surveillance systems soon will be running simultaneously in cities and counties throughout the United States. Each might analyze data from 10 or more data series—symptom categories, separate hospitals, OTC sales, and so on. Imagine if every county in the United States had in place a single syndromic surveillance system with a 0.1 percent false-positive rate; that is, the alarm goes off inappropriately only once in a thousand days. Because there are about 3,000 counties in the United States, on average three counties a day would have a false-positive alarm. The costs of excessive false alarms are both monetary, in terms of resources needed to respond to phantom events, and operational, because too many false events desensitize responders to real events….

There are obviously many issues relating to public policy regarding to access and dissemination of information generated by such a public health database, but there are two particular items providing contradictory information which I’d like to present, and hear your reactions and thoughts:

Livingston, NJ -When news of former President Bill Clinton’s experience with chest pains and his impending cardiac bypass surgery hit the streets, hospital emergency departments and urgent care centers in the Northeast reportedly had an increase in cardiac patients. Referred to as “the Bill Clinton Effect,” the talked-about increase in cardiac patients seeking care has now been substantiated by Emergency Medical Associates’ (EMA) bio-surveillance system.

Reports of Clinton’s health woes were first reported on September 3rd, with newspaper accounts appearing nationally in September 4th editions. On September 6th, EMA’s bio-surveillance noted an 11% increase in emergency department visits with patients complaining of chest pain (over the historical average for that date), followed by a 76% increase in chest pain visits on September 7th, and a 53% increase in chest pain visits on September 8th.

The second story has to do with my own personal experience and observation of the Public Health authorities’ actions in Warsaw immediately following the Chernobyl accident. In Warsaw, the authorities had prepared for the event, and children were immediately given iodine to prevent the uptake of radioactive iodine. This has been widely credited with preventing many deaths due to cancer. In Warsaw, the Public Health Authorities also very promptly informed the public about the level of ambient radiation. Certainly, there was great concern among the populace but panic was largely averted. My empirical evidence is of course limited, but my gut feeling is that much dislocation was averted by (1) the obvious signs of organized preparation for such an event, and (2) the transparency with which data concerning public health were disseminated.

Links:
article summarizing ‘Syndromic Surveillance’
CDC article
epi-x, CDC’s epidemic monitoring program