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

31 Communities of Pediatric Care and Practice 409
31.7.6 Developing Health Information Standards
and Policies
HIE leadership must consider four dimensions of health information standards:
Identification of data standard needs (Data dictionaries, terminologies, unit
reporting conventions): Consistency of data field names, their content and the
level of detail that is specified in EMR/PHRs for use in HIEs is essential. For
children’s health information, items such as tests may have highly specific
names and abbreviations and use different normal ranges than corresponding
tests for adults. HIEs will need to provide a process to include such standards.
Identification standards (Patient identifiers): Controversies on mandatory
national patient identifiers make its implementation unlikely despite support for
its use for children. 30 Numerous organizations support the use of a voluntary
healthcare identifier and there are numerous approaches to this with proposed
standards. 31 The significant risk of misidentification of patients using classical
healthcare identifiers (name and date of birth) for children make considerations
for its use (either voluntary or involuntary) important.
Authentication standards (Provider and requestor identifiers): Much of this has
been simplified by the establishment and implementation of the National Plan
and Provider Enumeration System (NPPES). 32
Pediatric standards in EMRs for HIEs:
Pediatric requirements for EMRs have
been articulated by the AAP30 . These need to be considered during HIE formation
and expansion. These include special data representation, processing, and administrative
needs (see Table 31.1). Unless a HIE is able to display its information
through a pediatric-compatible EMR, challenges will exist for both “transactional”
and “analytic” HIEs. The challenge to HIEs and pediatrics is that while EMRs
have dramatically improved over the last 3 years in their ability to handle these
issues, the battle to incorporate these features at the HIE level has just begun.
Table 31.1 Special data needs for pediatric EMRs for HIEs 30
Special Data Representation Needs
Presenting growth information (i.e., height, weight, head circumference and body mass index
from a variety of locations where the child has received care) in specialized growth charts in
order to get an accurate picture of the child’s development.
Tracking multiple name changes in a way that allows for searching on any one of them. For
example, a child could be named “Girl of Mary Smith” at her birth hospital if the hospital
uses the mother’s maiden name, “Sally Jones” at her pediatrician’s office and “Sally
Samuels” at a different pediatrician’s office once she is adopted and moves across town.
In between, Sally may have adopted a special nickname that she would want to have used.
Each location of care could have a different name for this child and only the HIE would
have all three. Robust algorithms for matching this child’s multiple names (short of a voluntary
or mandatory health identifier) need to exist at the HIE level to handle these situations.
Reporting age-based normal values, especially those that differ across institutions. For example,
sick neonates can easily have a respiratory rate of 100 breaths per minute, but this would be
flagged as grossly abnormal by most adult-based systems and many would not even allow a
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