Seven years and counting: National disease-tracking system still unfinished

A dozen states have yet to install technology needed to enable public health officials to monitor disease outbreaks via the Web

You might think that in the event of a major epidemic across the U.S., public health officials at the federal, state and local levels could track the outbreak electronically, using real-time data to try to control the spread of the disease.

But you'd be wrong.

An effort to develop those capabilities has been under way since 2001 through the U.S. Centers for Disease Control and Prevention. The CDC is pushing the adoption of a Web-based system designed to give it and other health agencies nationwide rapid access to information about outbreaks of infectious diseases.

Local and state health officials who are using the system can submit case reports to the CDC more quickly than they could before, and they are eventually supposed to be able to view data from other jurisdictions online.

Seven years after the CDC launched the initiative, though, the National Electronic Disease Surveillance System has yet to be completed. At this point, only 38 of the 50 states, plus the District of Columbia, are fully compliant with the technical requirements of NEDSS.

As a result, the data being input into the fledgling system is far from complete. And for now, information is flowing only in one direction — from local and state health agencies to the CDC. Until NEDSS is finished, state and local health officials can't go into the system and see what's happening across the nation, limiting their ability to monitor the spread of diseases.

The slow progress on NEDSS is forcing health agencies to continue relying on an existing system in which disease reports are manually entered into state-level databases and then transmitted to the CDC on a weekly basis.

For many health officials, the continuing inability to track outbreaks in real time is a source of both frustration and public-safety concerns.

"As a nation, we should be astounded that this capacity doesn't exist," said Dr. Scott McNabb, an epidemiologist who heads the NEDSS program in his job as director of the CDC's Division of Integrated Surveillance Systems and Services. "It should be a call for action."

McNabb described the capabilities of NEDSS as "absolutely mission-critical" for health officials. "With disease outbreaks, if local and state health departments are able to identify them quicker, then we are able to prevent future cases," he said. "But if we don't identify cases in a timely way, then people are at risk."

NEDSS Compliance Status, by Number of States

Compliance Criteria Nov. '04 Nov. '05 Nov. '06 Nov. '07
No. 1: Integrated data repository 17 23 36 44
No. 2: Electronic lab-result messaging 15 19 35 41
No. 3: Web-based software 21 28 37 44

States meeting Criteria 1, 2

and 3
15 19 30 38
Source: National Center for Public Health Informatics, Centers for Disease Control and Prevention

Efforts to get the 12 remaining states to finish their NEDSS compliance work are progressing, McNabb said, adding that he hopes to have all of them on board by next July. Six of the states have only one of the three criteria left to meet, while California, Connecticut and Utah have yet to comply with any of the requirements.

One of the major causes of the delays in completing NEDSS has been a shortage of federal funding for the project. The CDC has been receiving just $24.7 million annually for NEDSS, much of which the agency passes on to the states. A bill before Congress would provide $2.5 billion over five years to complete the system and pay for new hardware needed to make it more functional, but no action has been taken on that measure.

Also, even CDC officials acknowledge that NEDSS requires a major effort on the part of the states, partly because it involves more complex data than they had to work with in the past.

Before, infectious disease cases were reported individually and didn't automatically get grouped in a database. With NEDSS, states will combine their reports into integrated data repositories, giving users a fuller picture of what is happening regionally and nationally — but also imposing new data-management requirements.

"It is a giant difference, and a tremendous challenge, on the informatics side because it means you're now dealing in the relational database area, not just a flat file," McNabb said.

Another complicating factor is that there's no single technology that the states need to deploy. The CDC offers the free NEDSS Base System, which is built on top of Java and uses Red Hat Inc.'s JBoss application server software. But states can build their own applications or buy them from the handful of vendors that sell NEDSS-compliant products, as long as the software is browser-based and meets interoperability standards for data storage and messaging of electronic laboratory results.

Only 16 states are using the CDC-supplied system, which was developed for the agency by Computer Sciences Corp. and first became available in 2002. The low adoption rate is fine by McNabb, who said that forcing a monolithic system on the states wouldn't have worked. "Nobody would accept it," he noted. "We want it to be from the grass roots up, not the top down."

One promising development, according to McNabb, is that the Collaborative Software Initiative (CSI) in Portland, Ore., has created an open-source NEDSS application as part of a project that includes Utah's health and technology services departments. An open-source option could make it easier for states to collaborate on development of NEDSS software or enable them to modify the code to meet their needs, McNabb said.

Missing Connections

Dr. Robert Rolfs, state epidemiologist at the Utah Department of Health, said the agency began working with CSI last November after its original NEDSS software vendor went out of business. A deployment of the open-source technology is about half complete, Rolfs said, adding that NEDSS will replace a system that doesn't directly connect Utah's local public health offices to one another or to the state.

The problem with the existing setup is that disease reports may be received by either the state health department or county agencies, some of which may not even enter the information into a computer. "What we need is to connect the locals to the state to the CDC, so everybody is part of the same grid," Rolfs said.

Rolfs is among the health officials who have been frustrated with the slow pace of the national NEDSS rollout. But he said he understands that it's a large undertaking because of the involvement of all the states as well as the 2,000 or so local health agencies in the U.S. And once NEDSS is finally completed, he expects the benefits to be worth the effort.

Currently, "we find a way to get things done," Rolfs said. But, he added, NEDSS will enable public health officials to work more efficiently and to do things that aren't possible now.

Initially, NEDSS won't be used to monitor all infectious diseases. For example, the system will track cases of E. coli, salmonella, strep and tuberculosis that are reported to state and local health agencies, but it won't be used at first for reporting incidents of sexually transmitted diseases or HIV infections and cases of AIDS.

Long-term plans also call for NEDSS to be integrated with electronic medical records systems and other incident-tracking technologies, such as the U.S. Food and Drug Administration's food-safety monitoring applications. That would give NEDSS users broader data-analysis capabilities but would require many more steps, including the development of stringent data security and privacy protections for medical records.

For now, Dr. Marion Kainer, a medical epidemiologist at the Tennessee Department of Health, which has been using the CDC's NEDSS software since April 2004, is looking forward to simply being able to use the system to access disease information from other states.

"But it takes a lot of resources to get there," Kainer cautioned. In addition to more money, what's needed to speed up the transition to NEDSS, she said, are workers who are trained in both public health informatics and IT, so they can tell IT departments exactly what is required.

Kainer added that she isn't fazed by the fact that the 50 states are using a range of software to connect to NEDSS. Although that complicates things a bit, "if everybody adheres to standards, we can get there," she said. "If everybody just goes and develops their own vocabulary, we'll be where we are for a long, long time."

Copyright © 2008 IDG Communications, Inc.

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