Pediatric Informatics: Computer Applications in Child Health (Health ...

6 Children with Developmental Disorders and Other Special Needs 59
Surveillance of more severe types of problems (such as birth defects) may be
more standardized. An example of this is the Birth Defects Monitoring Program
(BDMP) of the Centers for Disease Control. Although 34 states are involved in this
program, reliability and validity of data collection vary. Although there is standardized
collection of birth records, only 11 of these 34 states have active case-finding,
without which many CSHCN might be excluded because their birth defects would
not discovered until days or months after birth. 24 A report from the Centers for
Disease Control and Prevention (CDC) 24 using BDMP data, for example, found that
cleft lip/palate was the most common birth defect, followed by Trisomy 21. The
key to achieving accurate results (reliable data) is to use programs that have been
designed and standardized for a particular purpose (e.g., the BDMP) as opposed to
“routine information systems” such as uncontrolled population registers or general
child health surveys to monitor the prevalence of disabilities in children. 25
Standardized surveillance and monitoring are useful to determine variations in
incidence or prevalence. Data on variations may help identify or rule out causative
agents. In one example, data from the Metropolitan Atlanta Congenital Defects
Program did not reveal a significant seasonal variance in birth defects, 26 while in
other examples, data have revealed seasonal variation of premature births in the
United States, which have led researchers to look for causation, such as infectious
diseases. 27,28
An example of information technology to improve detection and coordination
among public health agencies and private health services is a project of the Genetic
Services branch of the federal Maternal Child Health Bureau. In this project, grants
are given to 25 states to improve the integration of the newborn metabolic screening
results systems (and their linked genetic referral systems) to other maternal
and child health systems within each state. In cooperation with the federal Public
Health Informatics Institute, a qualitative assessment named “All Kids Count” has
been developed to assess these state innovations and to implement a “business/
policy case addressing these innovations.” 29
The integration of information at the state level may improve decision-making
and funding for agencies dealing with CSCHN which can improve outcomes for
these children and families. Families have been found to be enthusiastic about integrated
information systems, feeling that they might assist in coordination of health
care, but need to be central in the planning, development, and implementation of
such systems to maximize their value and impact. 30
6.2.2 Case Study: Part 2
In looking for a specialist for Jeffrey, his pediatrician was able to get information
and to set up an appointment through the secure Web site of the local children’s
hospital (of which she was also an attending pediatrician) via secure e-mail service.
Jeffrey would be seen in the Neurodevelopmental Diagnostic Clinic within
1 month.