State agencies have it. Providers now say they want it, too.
"It" is information on what ails people in their communities, people who traditionally used public agencies but are gravitating to the private sector for their care.
Provider and managed-care organizations are gearing up to serve the total needs of Medicaid populations and employees under capitated premium arrangements. That puts a premium on gathering all the information they can about their patients and on catching preventable problems.
Increasingly, states are mobilizing to package the data they have on individuals and populations. They are integrating isolated healthcare data into accessible, comprehensive information networks, says Daniel Mendelson, a vice president with the Lewin Group, a Fairfax, Va.-based health research and consulting firm.
Government health and social services departments have long been responsible for collecting data on everything from maternal and child health services to immunizations and communicable diseases, from details of birth to causes of death, he says.
But exploiting that data was a treasure hunt just to find what was contained within an archipelago of agencies. Then it became a bureaucratic adventure to shake the information loose and hammer it into usable form.
Even within state government, data sources have been fragmented and separate, making it tough for one agency to gain from another's data-gathering efforts, Mendelson says.
But the advent of new technologies, such as computer networks and the World Wide Web, has created mechanisms to integrate databases and streamline the release of information for consumers, policymakers and health professionals, he says.
What's happening. In the May/June issue of Health Affairs, the Lewin Group reported on information initiatives. Among projects up and running:
The Georgia Division of Public Health publishes weekly updates of 40 diseases that must be reported to the state, such as meningitis, salmonella and sexually transmitted diseases. A Web-based information system allows searching of a database for reported cases of any of the 40 conditions by location, demographics and time ranges. In addition, the system added birth and death certificate information to the Web site at the end of May, covering 1993 to 1995.
A computer system run by the Illinois Department of Public Health registers beneficiaries in the state's maternal and child health network, assesses risk factors to help determine needed services, automates the care plans and coordinates scheduling of services among available public- and private-sector provider locations.
An initiative called the California Health Information for Policy Project, or CHIPP, has linked hospital discharge data in one database to the state's vital statistics files in another database to provide richer insight into healthcare risk factors, allocation of resources and quality of care.
A related CHIPP effort has created an inventory of more than 125 health databases managed by 11 state departments, describing the characteristics of each one and including such details as the database format, type of media and department contact.
The opportunity. These and other state-sponsored projects are enhancing information support services for providers, whether targeted specifically for the healthcare community or for the broadest possible audience, Mendelson says.
Improving access to public health data, such as immunization registries and infectious-disease records, can be a boon to coordinated care for public and private sectors alike.
In addition to public health data, some information projects are organizing state-collected data on providers themselves, using technologies created for the Web to make the information more easily accessible and usable.
Utah, for example, has developed a site on the Internet allowing access to a hospital discharge database for customized queries, Mendelson says.
In undertaking these projects, states are facing some of the same policy issues and technical challenges that the leaders of emerging provider networks face. Some are further along than most budding private efforts.
For instance, the system serving the public health arena in Illinois, called Cornerstone, has created a statewide structure to preserve confidentiality.
The system has built-in layers of access that bring information from several agencies to bear on clients without revealing sensitive records to those without a need to know, says James Nelson, deputy director of the Illinois office of community health.
The system allows case workers to get a woman's history of substance abuse, for example, to help assess needs for prenatal services, Nelson says. But those assessment results remain at the site where they are collected. They are not transmitted to the state's central database and aren't available to other agencies through the statewide network.
California has worked out an identification system ensuring that a person's records in one database match the same individual's records elsewhere, without having to give away the identity or personal details to researchers with no business knowing such information.
The CHIPP database-integration effort has required upfront consensus on a core data set that forms a "virtual individual identifier," paving the way for a common means of linking information from the many databases, says Rick Barthels, assistant project director of CHIPP.
Under way. Works in progress or in the planning stages promise to expand the public-sponsored efforts into the private sector or make it easier for providers to report required information to the state.
In Illinois, most of the children on Medicaid still get their immunizations at neighborhood health centers, but the state is preparing to automate the immunization record in the private sector, Nelson says.
Using a software package operating through a telephone modem, physicians would report their immunization information into the same database the state maintains for its public health data, he says.
That would integrate public and private immunization records in a single program capable of managing infant and child health, regardless of location. For instance, the system can detect records of immunizations given to a child in three different counties, consolidate them into one record and project a schedule of shots still necessary, Nelson says.
Georgia's effort to computerize its disease and immunization reporting includes designing a system allowing physicians to submit reports on a Web site as an alternative to faxing a paper form, says Sharon McKenna, project manager with the division of public health.
Large laboratories also will be able to submit disease statistics by transferring data from a billing system, while physicians will be able to do the same for immunization information, McKenna says. The system is set to be tested in late summer and early fall.
The goal, McKenna says, is to get data to the agency more quickly and easily and with higher accuracy.
Once that's a routine process, the next step is to automatically monitor incoming reports to uncover trends in disease occurrence or to more quickly get the word out about critical afflictions such as meningitis or outbreaks of food poisoning, she says.
To uncover trends, researchers require not only related data to compare, such as vital statistics laid across disease rates, but also a long enough timeline to show movement one way or the other.
Georgia to date has entered 3.5 years of disease records, which helped develop the operational prototype of the information system.
The next step, according to the public health division, will be to move 10 years of death records and then 10 years of birth records, along with five years of birth/death data linked to records of Medicaid beneficiaries and those in the federal Women, Infants and Children nutrition program, McKenna says.
Link and load. California's CHIPP project started by loading information on 600,000 births and infant deaths in the first year, giving researchers not only hard data on occurrences but also demographic and geographic detail to draw upon, Barthels says.
And those records were linked with 1992 data on patient discharges at the state's 550 hospitals, he says. The proj-ect has since matched discharge data with vital statistics records for 1991 through 1994, and it is planning to increase the span to data from 1983 to 1995, he says.
The CHIPP leadership is discussing the possibility of facilitating population-based studies, using surveys to compile information on behaviors, habits and lifestyles of Californians and introducing the results into the database network.
That is something Georgia already is doing. Its Behavioral Risk Factor Surveillance System uses a random telephone dialing system to survey Georgia residents on a variety of risky behaviors involving tobacco and alcohol, use of seat belts, cholesterol screening, hypertension, weight and physical activity.
Results from that effort soon will be added to the public health division's Web site, bringing context to the vital statistics data, according to the agency.
Building the base. To get to where they are now, states have had to balance on the leading edge of communications technology, sometimes switching strategies in midstream to take advantage of innovations.
After developing a small system for use by public health staff, the Georgia proj-ect was broadened in 1995 to move the network concept to another technology platform capable of supporting a large number of users and multiple databases.
As the system was being developed, the Web "began to change the way the world was doing business," according to an overview of the public health division's integrated information systems strategy. "Opportunities became apparent like never before that allowed for the sharing of information and the linking of data with information and analyses." The plan was revised to incorporate Web capabilities.
The Cornerstone system in Illinois has its roots in a personal-computer-based system developed in 1989 that automated the state's Women, Infants and Children program, says Nelson of the office of community health.
From that foundation, the venture has integrated new system features and capacity incrementally, setting up locations around the state and integrating them with the central processing computer of the public health department.
The local-area networks collect and process client information, transmitting much of it to the central computer processing operation. The wide-area network linking the local sites allows sharing of appropriate data about public-assistance clients.
Financial support. That level of information system capacity, as healthcare executives know by now, doesn't come cheap. But states have avenues available that the private sector doesn't, such as grants and tax-supported appropriations.
The Illinois program got started when state officials talked federal officials into allowing part of a $1 million grant for a Healthy Start assistance program to be used to build one computer system for all federal programs, Nelson says.
In the interest of heading off incompatibility, Illinois was permitted to commingle funds from the Department of Agriculture, Social Security Administration, Centers for Disease Control and Prevention and the state's general revenues to finance implementation and procure computer hardware, he says.
Total cost of development and operation will reach $30 million by November, Nelson says. Over the years, the system has grown to 3,000 workstations at 350 sites, offering a 1-to-1 ratio of terminals to workers-nurses, doctors, nutritionists and clerks who regularly use the system in their work. The department spends $1.5 million a year just in training.
In California, the Robert Wood Johnson Foundation awarded a four-year, $1 million grant to begin operation of the CHIPP system, says Barthels, the assistant project director. With that grant about to run out, Gov. Pete Wilson is supporting continuation of the program through a proposed two-year, $472,000 appropriation.
The Georgia project originally received a $5.2 million grant from the Atlanta-based Robert W. Woodruff Foundation to build the wide-area computer network that forms the framework for the statewide system, says McKenna, the project manager.
In 1995 the Atlanta-based CDC awarded a three-year grant to help fund the information system's software development, which cost about $1.2 million. The public health division is looking to the state Legislature to continue supporting the effort when the latest grant expires after this year, McKenna says.