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

6 Children with Developmental Disorders and Other Special Needs 61
select appropriate tools for monitoring his developmental progress. Many of these
assessment tools included computer adaptive testing methods, which lessened the
time it took to administer them.
6.3 Care Coordination
The management of chronic illness, both physical and mental, has changed radically
in the past 20 years. Although most of this change is due to therapeutic advances,
there have also been important changes in care delivery, with shared care becoming
the norm. With this, there is an increasing need for coordination of care and
coordinated chronic condition management. 33,34
An essential facet of coordination of care for CSHCN is easily accessible shared
information. In the Case Study, the pediatrician and the hospital both had EMR
systems that were connected which shared the patient’s electronic health record
(EHR). An EHR has been defined as an electronic record that extends “the notion
of an EMR to include the concept of cross-institutional data-sharing.” 35 For any
patient with a chronic disease or condition (such as CSHCN), an EHR is a necessity
to ensure substantial care coordination.
There are many roadblocks to successful implementation of an EHR (Chapters
15–17) and health information exchange (HIE) (Chapter 31).
Data in multiple EMRs are often stored in proprietary data formats, causing
incompatibility between systems. 36
With many CSHCN, there is a need for storing large amounts of complex
non-textual data (e.g., EEG, MRI images, video recordings (such as gait lab
analyses) ). Data compression and other techniques have addressed some of
these issues, 37 and it is very important to note that multiple data types may need
to be integrated for CSCHN care coordination.
Data is frequently incomplete and in print formats. When print documents are
scanned, they are frequently only readable by humans (and therefore unusable
by electronic systems for searching or analysis).
The management of privacy and sharing of nonmedical information is very complex.
The Family Educational Rights and Privacy Act and other laws 38 require
explicit signed consents which make sharing difficult, however public health
agencies (such as the CDC) are finding methods to access de-identified data for
public health monitoring 39 or to use encrypted data and electronic consent (e.g.,
electronic signatures).
Until these barriers can be overcome effectively, paper documentation, carried
by parents/caretakers, remains the pragmatic “repository” of shared information
for CSHCN. Beyond bulky original paper documentation, paper-based systems
to summarize information in standard fashion for coordinating care have been
developed. 40,41 Copies of such summaries may be stored on secure Internet sites for
retrieval. Completed paper forms can also be scanned and stored on portable media