A child with cerebral palsy receives world-class care from a team of specialists that includes a neurosurgeon, a geneticist and a physical therapist. Yet amid the intricate web of medical expertise that is brought to bear in such a case, the child's basic health needs"an annual dental visit, routine immunizations"can fall through the cracks.
A new $100-million federal grant aims to fill those gaps in children's care, partly by using health information technology and developing a more detailed pediatric electronic health record.
"The basics are important because they directly impact children's health," said Dr. Francis Rushton, a South Carolina pediatrician and a board member of the American Association of Pediatrics. "Over the long run, dental disuse may become more important than the other issues of care."
The money will be split among 10 states to improve the quality and delivery of healthcare for children enrolled in Medicaid and the Children's Health Insurance Program (CHIP). The grants, to be awarded over a five-year period, were funded by the Children's Health Reauthorization Act of 2009 (CHIPRA).
"It's unique in that we haven't had funding focused on kids from the federal side," said Aimee C. Ossman, director Medicaid and State Policy Analysis at the National Association of Children's Hospitals. "It's a good step forward because kids aren't little adults. They have special healthcare needs."
The lead states include Colorado, Florida, Maine, Maryland, Massachusetts, North Carolina, Oregon, Pennsylvania, South Carolina and Utah. The money will assist 18 states total, as several states are collaborating with others.
The grants aim to establish a national quality system for children's healthcare. "These grants are very exciting opportunities to develop, test and share information about how to better serve children," wrote Cindy Mann, director of the federal Center for Medicaid and State Operations, in an e-mail. "We are particularly pleased that seven of the 10 grantees will focus on ways to integrate health information technology into child health practices, with several focusing on children with special needs."
While $100 million is a good bit of money, it pales in comparison to the $20 billion the government is spending on health information technology as part of the American Recovery and Reinvestment Act of 2009. The legislation, Health Information Technology for Economic and Clinical Health Act (HITECH), is intended to prompt 90 percent of doctors and 70 percent of hospitals to use electronic health records in the next decade.
While the sums vary, the goals are connected, said Dr. Feliciano (Pele) Yu, assistant professor of pediatrics, University of Alabama at Birmingham School of Medicine. Both spending programs work together to form a nationwide quality improvement effort in healthcare, which will benefit children. The HITECH Act provides incentives to use EMRs, and the CHIPRA grants will test which care measures resonate for child health providers across the country, said Dr. Yu.
States receiving CHIPRA funds will use a variety of strategies to evaluate some of the 24 proposed quality indicators of children's health identified by the Department of Health & Human Services, such as annual hemoglobin A1C testing for children with diabetes and well-child care visits in the first 15 months of life. Grant recipients will report on results toward the end of the five-year period.
At least one state, Massachusetts, plans to seek measures to test beyond the set identified by HHS. Their focus will be on in-patient services around special-needs children. "We hope to not just be testing what has been handed to us, but pushing the frontiers," said Joshua Greenberg, director, government relations, Children's Hospital Boston. "We know a huge chunk of the healthcare dollar is spent on the sickest kids and we need to get at some of that."
New EHR formats
Grant recipients in North Carolina and Pennsylvania will develop and test a new pediatric electronic health record format (P-EHR). The P-EHR will allow for a central repository of information about a child's health that can then be accessed wherever the child receives care. Many hospitals and doctors offices already use an electronic health record, but child health advocates say more needs to be done to customize the record to contain the right format and details for children, including using body weight to determine a medicine dose and recording multiple immunizations.
"The hope is that we won't scrap existing health records, but that vendors will develop modules that meet children's needs as well as adults," said Dr. Stephen M. Downs, director, children's health services research, Indiana University School of Medicine.
At the Children's Hospital of Philadelphia, a team of physicians and IT specialists will work together to ensure the P-EHR not only gathers medical information but also links children to services in the community or health system, said Dr. David J. Rubin, a pediatrician, researcher and a director of the hospital's PolicyLab, a program that works to directly connect research, treatment and health policy. The P-EHR will pave the way for quicker referrals, sending prescriptions instantly to pharmacies, and will analyze data on patients for doctors to consider in treatment.
The P-EHR will also allow parents, teachers, doctors and other medical professionals to weigh in on a child's plan of care. "It's sort of like a social network," said Dr. Rubin. "We can now make that EHR come to life and have a lot of power to improve access to care for children."
Creating a viable P-EHR has long been a top priority among child-health advocates. The Alliance for Pediatric Quality, a collaboration of four major national pediatric organizations, has been pushing for pediatric-friendly EHRs since 2003. Seven of the 10 states will use the federal money to start other health information technology strategies.
In South Carolina, a significant portion of the $9.3 million grant will be used to link all primary care pediatric offices to the South Carolina Health Information Exchange, a state wide electronic system for capturing data on patients.
Pediatric offices will then be able to compare results of patient treatment with other practices. Some doctors use antibiotics to treat children with strep throat, for example, whereas others allow infections to clear up on their own. Feeding the data on their patients into the electronic health exchange and comparing it to the records of similar patients will allow doctors to better evaluate which course of treatment works best.
"We don't have that kind of comparative effectiveness research," said Dr. Marion Burton, a pediatrician in South Carolina and president-elect of the American Academy of Pediatrics. "It will allow us to further recommend best practices."
Utah and Idaho's $10.3 million grant involves several IT components, including development of a method for pulling children's' immunization data from medical records and consolidating the information in state data bases. The two states will then connect their systems, which are supported by the same vendor.
Utah will also expand its Web site, www. medicalhomeportal.org, which provides information on uncommon conditions and available support services so that physicians can better guide their patients' care."Right now it's only in Utah, but it has the capacity to be nationwide," said Dr. Chuck Norlin, the site's director and director of Utah's Pediatric Partnership to Improve Healthcare Quality.
Tracking foster children
Health officials in Maine plan to use part of its $11.2 million award to launch a health data collection system for children in fos