The National Electronic Disease Surveillance System (NEDSS) will "revolutionize public health by gathering and analyzing information quickly and accurately," according to the Centers for Disease Control and Prevention (CDC).
This may be the case, but not without considerable adjustment and some aggravation, states have found.
The NEDSS initiative's goal is to promote the use of data and information standards to develop a more efficient way for the CDC to collect and disseminate information about diseases. The CDC is responsible for prevention and control of chronic-health diseases, environmental diseases and communicable diseases, and collects data to get a national picture of public health practices in the country.
Each state's health department is responsible for collecting data from its counties and passing it to the CDC. The problem, however, is state and municipal governments use more than 100 different data systems and data from many jurisdictions, which have different vocabularies and codes.
The CDC hopes the initiative -- which sets forth guidelines not only for data collection, reporting and common vocabularies, but also standard architecture -- will generate a more standard case report that can be sent to state health departments.
The NEDSS base system, which has not yet been released, is the computer application the CDC will offer. The Java-based application developed by Computer Sciences Corp. will create a standard NEDSS compliant interface for jurisdictions that have yet to develop their own.
"That's basically a re-engineering of current systems and getting it over the Web," said Dr. Claire Broome, a senior adviser with the CDC. "It's for use at the state level, and that will be useful to our state partners. The thing that is really different about NEDSS is the capacity to receive and transmit standard electronic messages."
The NEDSS initiative also provides a single user face with the core common data for the different systems. As diseases are diagnosed in laboratories around the country, an information system generates a Health Level 7 (HL7) standard message and sends it to a NEDSS "inbox." HL7 is a standards-developing organization geared toward creating interoperable clinical data exchange. Its information exchange model is widely used in the United States and internationally.
The system is designed to replace current CDC surveillance systems, including the National Electronic Telecommunications System for Surveillance (NETSS), the HIV/AIDS reporting system, and systems for vaccine-preventable diseases, tuberculosis and infectious diseases.
The CDC said NEDSS pilot projects have resulted in more than double the number of cases reported, and in some instances, the information provided was more complete.
Despite the CDC's confidence in these initial pilot projects, states are still unsure about key parts of the new system.
Some states expressed frustration over the NEDSS initiative, which was characterized as a "moving target."
"[The CDC] is close to being able to say, 'This is our final data model,' but they've gone through more than a dozen versions," said an anonymous source from a state department of health. "It's hard for us to say, 'OK, there's the model we're going to use, and we're going to set up this big database [based on that model].'"
The fact that the CDC has not set mandates to implement any of the standards has made it difficult to convince counties that NEDSS is the way to go, the source said.
"[Counties] keep coming back saying, 'Where is the department letter that says all of our systems should be NEDSS compliant?'" the source added.
One early problem with the NEDSS plan was that it didn't give the NEDSS initiative a "friendly face," said the source; this is crucial to the ability of state departments of health to sell the NEDSS initiative to counties.
The CDC's new approach to the initiative focuses more on functionality, calling for a Web-based standard with one interface.
"What we've realized is that to increase the functionality of a system, we have to offer some slick stuff through an Internet-based front end," the source said. "If I hit the submit button, I can get myself a nice little GIS report on where diseases have been occurring in my county."
Congress has provided federal grants for state and local governments to take advantage of NEDSS, and many jurisdictions are using the funds to modify existing systems to make them NEDSS compatible.
California considered adopting the base system, but chose to develop its existing system for compliance. The state will use the federal funds to "take care of infrastructure items that usually don't get covered through government categorical funding," said Ed Eriksson, the state's NEDSS project manager. "We want to be able to own the kinds of functionality that would be rolled out to counties.
"Usually, they're not going to fund a project manager or an integration-minded person who will think about how it's going to integrate with other applications and business processes," Eriksson continued. "We're using NEDSS to address some of these infrastructure items, such as security data modeling and coming up with a vocabulary that's based out of HL7 so a case or specimen has the same definition across all applications."
Other states, such as Alabama, are using NETSS and waiting for the base system to develop further.
"Why reinvent the wheel?" said Richard Holmes, director of surveillance for Alabama's Department of Health, adding that Alabama is "essentially sitting in a holding pattern waiting for [the CDC] to put us in the queue for release of the base system."
That type of delay is one reason other states chose to develop their own systems.
"The CDC tends to take its time developing things," said Carol Hoban, project manager for the Georgia Department of Health. Georgia developed its own Web-based system that is NEDSS compatible, also making sure its system would be tailored to the state's needs.
"The reporting needs vary from state to state, although there are national reporting standards," Hoban said.
National standards, like HL7, are driving NEDSS, the CDC said. Without them, results of disease outbreaks across multiple counties or states would be difficult to interpret because of the different vocabulary used by different jurisdictions.
"Total flexibility would not be useful," said the CDC's Broome.
Maine pondered before deciding to go with the base system, but with some modifications.
"We talked with the CDC and asked about porting it over from a Wintel platform to a UNIX platform," said Mike Wenzel, health program manager for the Maine Immunization Program. "We're also looking into using iHUB [middleware] as a translation methodology between different entities."
The NEDSS guidelines will become the backbone of Maine's public health infrastructure, Wenzel said.
"It will become a unifying set of standards for how we perform all our public health operations," he said. "In essence, we're going to de-silo our Bureau of Health applications into an Oracle-NEDSS kind of situation and call it the Maine Public Health Infrastructure."