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By John Pulley
An infant arrived recently at a Kentucky emergency room with a life-threatening but undiagnosed illness. Unable to reach the baby’s parents or access her health record, doctors contacted the Kentucky Children’s Hospital in Lexington. There, doctors equipped with an electronic medical record system were able to unravel the mystery as a metabolic disorder and initiate treatment. Later, the girl was flown to Lexington to continue her recovery.
“When information is at your fingertips, it starts to make a difference,” said Dr. Carol Steltenkamp, associate professor of pediatrics at the University of Kentucky College of Medicine, chief medical information officer at UK HealthCare and chairwoman of the Kentucky eHealth Network’s board. “When that baby showed up in the local ER, those doctors should have been able to start care there.”
The delayed diagnosis resulted in no adverse effects, but the story illustrates the promise of pediatric health information technology and the perils of its scattershot implementation. Although children’s hospitals develop and deploy health IT at rates exceeding those found at general hospitals, use of pediatric health IT has lagged elsewhere.
Now, a loose confederation of vendors, government agencies, advocacy groups and children’s hospitals is increasing its efforts to use IT for the benefit of pediatric patients. The organizations are collaborating to develop new technical standards, promote interoperability and enhance the functions of IT systems used in pediatric settings.
The initiatives have sparked a growing awareness that children’s health IT should be considered a baseline technology rather than a specialty. “Pediatrics symbolizes the use of IT in medicine,” Steltenkamp said.
Experts hope that a more widespread, electronic exchange of pediatric data would reduce risks to the health of some of society’s most vulnerable members. That achievement would go a long way toward improving overall public health, advocates say.
“There is now the beginning of the formalization of pediatric child health interest in IT,” said Dr. Feliciano Yu, assistant professor of pediatrics at the University of Alabama at Birmingham School of Medicine.
“Over the past two or three years, there has been a [recognition] within the child health community that IT is an important aspect of delivering care,” said Yu, who is also co-chairman of the Pediatric Health Informatics and Technology Special Interest Group at the Healthcare Information and Management Systems Society. “We’re seeing the emergence of pediatric care as a focus of health IT.”
Children don’t vote
Until recently, advances in electronic health records and other applications had largely overlooked the needs of pediatric medicine. IT vendors and other members of the health care community tended to view childhood health as a specialty area, even though children constitute as much as one-third of the population.
“Children don’t vote,” said Dr. Stephen Downs, director of the Children’s Health Services Research Program at the Indiana University School of Medicine. “The typical EMR system tends not to support a lot of the functionality that pediatricians need. But it’s beginning to get a little more attention.”
Pediatricians are critical of EMRs that lack fields for charting and graphing developmental criteria — such as head circumference, body weight and body mass — that are needed to assess the health of both premature infants and 200-pound adolescent football players.
Electronic records also fail to accommodate pediatric patients’ multiple names, which might include “baby boy” or “baby girl” at birth, legal name changes and nicknames bestowed by grandparents. Nor do electronic records necessarily handle children’s complicated guardianship issues — foster care, adoption, joint or shared custody. And health IT products frequently fail to accommodate pediatric dosing requirements that require special algorithms to calculate.
“We’ve all had the experience of using a computer system in a clinical context where it becomes obvious that it wasn’t designed [with] infants, children or adolescents in mind,” said Dr. Andrew Spooner, chief medical information officer at Cincinnati Children’s Hospital Medical Center.
The irony is that health IT functions developed for pediatric uses invariably benefit nonpediatric medicine. Dosing by body weight — a critical function for pediatrics — is crucial for elderly patients, too. EMRs that can accommodate guardianship issues could also help adult patients. “What about mentally incapacitated adults or adult prisoners?” Spooner asked. “All the special pediatric functions we’ve come up with are of value in adult care as well.”
Pediatric data standards
Many professional groups are working to develop standards intended to make pediatric health IT more useful and, ultimately, easier to use. Last summer, the Certification Commission for Healthcare IT (CCHIT) formed a new Child Health Expert Panel to develop certification criteria for children’s medicine. And earlier this year, the Alliance for Pediatric Quality (APQ), a collaboration of four national pediatric organizations, worked with the standards group Health Level 7 (HL7) to release a Child Health Functional Profile.
To comply with the new standard, software vendors must include features relevant to pediatric patient care, according to APQ, including “immunization schedules, drug dosage calculations based on body weight, pediatric data norms for vital signs, lab results and body measurements, and special privacy issues faced by children and families.” The American National Standards Institute is expected to adopt the profile.
“Data standards are the first step to accomplishing interoperability,” said Joy Kuhl, director of APQ’s health IT initiative and co-chairwoman of HL7’s Pediatric Data Standards Special Interest Group and CCHIT’s Child Health Expert Panel. “For the first time, vendors will have separate seals on products that shows they are certified for child health.”
Standardization and interoperability will make it easier to collect data on immunizations and certain diseases from a wide array of sources. The next challenge is creating messaging standards that will support large-scale health IT projects involving multiple organizations and databases.
Public health links
Strong links between the health of children and the broader population suggest that pediatric health IT could significantly benefit public health. Newborn screening, lead testing and immunization registries are examples of why “pediatrics is the field where interaction between health care and public health is the strongest,” Downs said.
Too often, though, information is stored in stand-alone systems from which it is not easily retrieved or transmitted. To address that issue, the American Academy of Pediatrics has created the Partnership for Policy Implementation to integrate health IT functions into pediatric clinical guidelines.
Elsewhere, the Public Health Informatics Institute is developing guidelines organizations can use to receive and transmit data using HL7 standards.
“These systems tend to be at this stage of the game pretty much disjointed,” Downs said. “Interoperability and information exchange is the new direction.”
Elsewhere, the Personalized Healthcare Workgroup at the American Health Information Community is developing strategies for managing genet c data that could provide a new window into understanding the causes of disease. The panel is creating scenarios for screening newborns as a focus for health IT development.
For example, almost all infants undergo screenings to test for diseases that could cause severe damage if not treated early. Screening and follow-up care form a complex process involving multiple handoffs among hospitals, state labs, pediatricians and specialists.
AHIC is looking for a set of approved standards that would guide health IT vendors’ standards for interoperability in this area. “That may be the hottest thing within the domain,” Downs said.
The hope is that improved interoperability for newborn screening will transform pediatric data into a powerful lever for improving public health.
“Virtually every state has a statewide registry in place, yet they don’t all talk the same electronic language,” said Dr. Daniel Nigrin, senior vice president of information systems and chief information officer at Children’s Hospital Boston. “Places with big electronic medical records installations still have separate stand-alone systems to deal with immunizations and tracking.”
But for all the activity, many government policies and industry initiatives aimed at promoting pediatric health IT have had mixed results. Several factors have slowed development, including lower reimbursement rates for pediatric specialties, which makes the field less lucrative for vendors, to children’s lack of political representation, experts say.
Relaxation of the federal Stark law was expected to double the rate at which individual physicians and small pediatric practices adopted health IT by allowing hospitals to pay for the systems. However, lifting the Stark provisions has had a limited effect, said Dr. Mark Del Beccaro, pediatrician-in-chief and chief medical information officer at Children’s Hospital and Regional Medical Center in Seattle.
“Doctors wouldn’t want to use our system even if we gave it to them because it didn’t have the right workflow” for them.
In the tri-state area of Ohio, Kentucky and Indiana, the HealthBridge health information exchange shares some medical data, including information on pediatric patients, but expanding that and similar programs has proved challenging.
“I am a little discouraged that we have yet to exchange information throughout the state,” Steltenkamp said. “We can get their banking records but not their medical records.”
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