All the health crises since 2001 - anthrax, West Nile, smallpox vaccinations and now SARS (Severe Acute Respiratory Syndrome) - are starting to blur together for Dr. Tom Safranek, state epidemiologist for Nebraska.
Although SARS, a pneumonia-like illness, hasn't reared its head in Nebraska, Safranek has to prepare emergency rooms, educate the public and make sure labs are ready for what could be an epidemic.
"People in our business move from one new crisis to another only separated by a few months," says Safranek.
One of the biggest blockades to stopping new waves of contagion is the relatively rudimentary means of sharing data in the medical profession. Most data about SARS or any other disease is exchanged between hospitals and medical practitioners via phone, fax, express deliveries and ground mail of paper forms.
Even when two institutions want to zap information to each other electronically, it's not easy. Pick a disease from tuberculosis to AIDS to SARS and each agency, hospital, lab or health organization involved in fighting it has its own separate database. And a proprietary computing system behind it.
Ed Carubis, CIO of New York City's Department of Health and Mental Hygiene, is on the receiving end of these systems. He has to manage data from city hospitals delivering information on diseases by mail, fax, attached spreadsheets and unformatted electronic text. Standards? There are none.
"From hospitals the data we get is mostly through paper and fax," says Carubis. "A number of labs transmit electronically, but it's up to us to format, parse and distribute the data we get. For something like SARS, communication is through phone and fax."
But mixing and matching electrons and paper still slows responses to new emergencies by days, if not weeks. If health agencies and organizations' computing systems used common communication protocols and data formats, it could help stem an outbreak, meaning more life than death.
Few disease surveillance and tracking systems are even set up to interconnect. The Centers for Disease Control maintains more than 100 databases sorted by disease. But a doctor in Toronto's University Health Network can't access them from a desktop computer unless the information is publicly listed on the CDC Web site. Reports from UHN's three Toronto hospitals are delivered to the Ontario Ministry of Health and Long-Term Care by phone, mail and fax, and then re-entered to databases by hand.
That kludgy system is working - for now. By most counts, the response to SARS hasn't been hurt by the lack of electronic data exchange because there has been cooperation between the World Health Organization and federal, state and local health agencies to thwart an outbreak. Labs around the world have been able to cooperate via secure Web sites and telephone to swap data and genetically map SARS.
Stateside, the CDC has improved response to SARS compared with the 2001 anthrax attacks. Back then, it was overwhelmed trying to manage 150,000 lab tests. Results were mostly taken over the phone, with information entered by hand into computers.
But the rapid response to SARS doesn't mean the current ad hoc health network connecting public and private labs, hospitals, cities, states and the federal government could scale to handle a big epidemic or bio-terror attack. Cumulative global SARS cases totaled 6,234 through May 3, with 54 of them in the U.S., according to the World Health Organization. In comparison, China had more than 15,000 probable influenza cases in Beijing between October and November.
Recognizing the need to track diseases nationally, the CDC is pushing an initiative dubbed the National Electronic Disease Surveillance System (NEDSS). That system, in turn, will encourage standards such as Health Level 7 (HL7), a set of tagging and formatting principles for sending, receiving and handling clinical data messages such as incidences of disease, illness and lab reports. The surveillance system will initially improve the efficiency of reporting communicable disease, but eventually will influence tracking of symptoms through 911 calls and emergency room visits.
Using HL7 and the eXtensible Markup Language (XML), federal-, state- and city-level systems should be able to swap data, such as dates, locations, symptoms and type of patient, even if their computer systems don't otherwise communicate.
One of the linchpins of a NEDSS system is an integrated data repository, a networked set of databases able to share data, inputs, processes, outputs and interrelationships. Here's how these networked databases would operate: Each disease, symptom or illness would have a unique numeric identifier that could be tracked across the local, state and CDC systems. Such a system would be able to track a person and cross-reference symptoms and diseases.
Safranek is overseeing a pilot of NEDSS that's designed to supply data from Nebraska's hospitals, labs and health agencies to the CDC. By collapsing a host of disease- oriented databases, the state will be able to make real-time monitoring decisions.
Meanwhile, Tennessee is replacing a 13-year-old method for tracking communicable diseases that relies on the relatively old Disk Operating System (DOS), with a more modern version that works with the national surveillance system. All 50 states have received funding to adopt a system compliant with NEDSS.
If successful, NEDSS will be the first national-disease- surveillance system. Once implemented - a process that will take several years - the emergence of a single incident of an unfamiliar virus or disease can be communicated to all participants in what businesses would call "real time."
"Most clinical information systems are not standardized nationally," says Dr. John Loonsk, associate director for informatics at the CDC. "It's problematic when you are looking to get information out and the data are in different forms and different systems. They're not accessible."
What You Should Do To: Organize Instant Networks
KEEP IT SIMPLE Use data formats that are widely used already. Minimize adaptations.
PICK A STANDARD Settle on an Internet or industry protocol for communicating.
BUILD ON WHAT'S OUT THERE Allow members of the network to maintain their existing systems.
REACH OUT If patches or fixes are needed to an ally's systems, offer help right away. Make it easy to trade information.
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