Diagnosis: Disconnected

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. “It’s a new environment that really started with anthrax in 2001. Since then it’s been West Nile, then the smallpox vaccination program and then SARS. Each of these requires a major commitment.”

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. Stemming an outbreak could mean more life than death, if health agencies and organizations’ computing systems used common communication protocols and data formats.

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 were able to cooperate via secure Web sites and telephone to swap data and genetically map SARS.

Stateside, the CDC has dramatically improved response to SARS compared with the 2001 anthrax attacks. Back then, it was overwhelmed trying to manage 150,000 lab tests, whose 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. 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.