October, 2005

Lost but not forgotten
Integrated information systems help improve referral and follow-up

Integrated databases and systems accessible through a common interface or portal help make referral and follow-up more efficient and effective. Many states are integrating vital records, newborn dried blood spot screening, newborn hearing screening, immunization registries, and other early child health information systems to improve their efficiency and effectiveness in providing follow-up and referral services to children with special needs. The information offered by integrated systems saves time and delivers many referral and follow-up opportunities and benefits to families, public health staff, and health care providers:

• Families: Allows access to screening results, immunizations, and other medical information as well as referral to other resources such as specialists, social services, and support groups. In some states, access to medical records is permitted only through a physician contact.
• Public health staff: Lifts some of the burden from busy public health staff. Knowing whether a child is alive, has been screened, and has a correct address on file helps staff offer numerous follow-up resources in one visit or call. Can reduce the number of children “lost to follow-up.”
• Health care providers: Can provide comprehensive public health information to the medical home. All information, such as critical early intervention (EI) results (or whether the child is participating in an EI program), may be accessed by physicians and other care providers.

Small state, big results
Since the Rhode Island Department of Health integrated newborn dried blood spot screening with its KIDSNET immunization registry in 2004, the value of sharing data has become obvious.

“To date we have found 14 true misses—kids who had not been screened,” says program manager Ellen Amore, “and another 60 test results had been delayed.”

That’s in a state with an annual birth cohort of only 13,000. Although many American cities have a larger birth cohort than the state of Rhode Island, few are as advanced in their newborn screening information systems.

KIDSNET is an online public health information management system that tracks children’s preventive health services and promotes and shares information between providers and agencies for coordination of care. KIDSNET facilitates the collection and sharing of health data with health care providers, parents, MCH programs, and other child service providers for timely and appropriate preventive health services and follow-up.

The six-day report
KIDSNET, which now integrates programs in Newborn Developmental Risk, Newborn Blood Spot Screening, Newborn Hearing Assessment, Immunization, Childhood Lead Poisoning, Vital Records, WIC, Early Intervention, Family Outreach (home visiting) Program, and Birth Defects, runs what it calls a six-day report. The report flags every baby six days old who does not have a newborn screening record. Newborn Screening staff then look up each child in the laboratory data system. If no record is found, they call the hospital to confirm that no test is on record. When a record is found, the health department works with the hospital to determine why the specimen has not been received by the lab and if necessary to have a repeat specimen drawn.

Sometimes the record—and thus the newborn—has fallen through the cracks, or there is no record at all, a “true miss.” The health department then works with the hospital or pediatrician to have the specimen collected immediately. With data integration, the health department’s follow-up and referral functions have become far more efficient.

Meanwhile, out west
In Utah, one of the big-picture goals for referral and follow-up is to involve families more in developing systems with the public and private health care community. The Utah system, called Child Health Advanced Records Management (CHARM), will ultimately improve services to children and families by providing more complete health information to the child’s medical home and participating health care programs. Family representatives participated in the planning and development of CHARM and continue to attend data integration meetings.

CHARM’s integrated infrastructure offers a kind of one-stop shopping to access program information and then share authorized data ranging from Newborn Hearing Screening, Newborn Metabolic/Heelstick Screening, Immunization Records, Early Intervention participation, Birth Defects, Vital Records, and others. This allows public and private health care providers to be more proactive and knowledgeable about a child’s health, and provide better patient care to families. Additionally, sharing demographic information will also help locate children who may have missed appointments or need follow-up services.

“We still lose a lot of kids to follow-up,” says Lynn Martinez, Utah State Genetics Coordinator. “But now we can go to several different programs all within the CHARM system. A program manager can check whether a child has died, for example, by going into the Vital Records database (through CHARM), before making a follow-up phone call.”

“It’s been difficult to get public health program people to buy into the integration of systems,” she says, “because planning and implementation adds to their already overflowing plates. Now that program people see the benefits for referral and follow-up, they’re excited. There’s momentum building.”

Adding to that momentum, Utah is developing a flag alert system for its hearing screening results to integrate with Vital Records in 2006. The goal, says CHARM Manager Rich Harward, is to reduce the number of children lost to follow-up who have tested positive for hearing loss.

“A high percentage of kids who fail the initial screening don’t return for follow-up,” he says. “Building alerts into the information system will catch a lot more of them.”

And in the heartland
Missouri has one of the most comprehensive integrated child health information systems in the country. The state integrates metabolic screening, newborn hearing, and special health care needs and handles the case management – including referral and follow-up – for these time-critical programs.

In addition, numerous other programs are viewable on the same screen by case workers in other programs. When follow-up is needed, such as an overdue immunization or lead screening, a flag alert displays. This is helpful in the public health setting, where a WIC case worker, for example, can see the flag and make a referral to the clinic down the hall.

“You can build the world’s greatest tool, which is what an information system is – a tool,” says Nancy Hoffman, a surveillance and epidemiology manager at the Missouri Department of Health. “But until the users take advantage of all its features and really want to use it, all you have is a great tool sitting there. They have to want to access all the benefits.”

In Minnesota, the Newborn Screening Program and Data Integration project expands and enhances the delivery of patient care, laboratory tests, and services to families and medical home providers. Minnesota is also working on integrating care coordination for follow-up and family referral to services and resources. For more information, see On Site With … in the October 2005 Connections newsletter.

In conclusion
For the ongoing health of children, referral and follow-up processes are just as critical as initial screening tests. Every state is aware that a certain percentage of children are “lost to follow-up,” often due to information that is inaccurate or not up-to-date. Integrated databases that are accessible systems with flag alerts can reduce this risk, making referral and follow-up more efficient and effective for public health staff, families, social services, private providers, and the medical home.

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Last updated November 1, 2005 November 1, 2005