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

3 Core Pediatric Data 23
3.6 Pediatric Core Data for Quality Improvement
and Clinical Research
The potential of pediatric data to provide insights for improvements in quality
and safety for patient care and population health outcomes has been well
appreciated.
The federal government periodically collects population data for understanding
trends and setting norms for national health measures. The Centers
for Disease Control and Prevention, 4 the National Center for Health Statistics
(NCVHS) 5 and the Agency for Health Quality Research (AHRQ) 6,7 among
others have created large reference data sets (and tools to use them) for child
health quality improvement and research, including the National Health
and Nutrition Examination Survey (NHANES), 8 the National Immunization
Survey (NIS) 9 and the National Vital Statistics System (NVSS). 10 One large
prospective study sponsored by the US Department of Health and Human
Services and the Environmental Protection agency, the National Children’s
Study 11 is collecting core pediatric data on exposures to environmental hazards
on a national sample over several decades. Similar efforts are occurring
in other countries.
Professional collaborative projects to collect clinical data for research, quality
measurement and for evaluating the impact of interventions on health outcomes
that define core data elements for reporting have been growing as electronic
communications and computing power grow. Examples of such projects include
the Vermont Oxford Network for neonatology, 12 the Interactive Autism Network
(described in Chapter 34) and the National Pediatric Trauma Database. 13 New data
types, including genomic information, have been added to core data sets used in
disease registries to help identify patients at risk and who may benefit from new
therapies and clinical trials.
Interest in reusing de-identified clinical data for research has grown as the
capability for collecting, storing, and retrieving it for analytic processes 14 has
increased. New uses, such as adverse drug event alerting systems 15 and clinical
dashboards 16 that provide real-time measures of key performance indicators for
clinical and practice decisions as well as research insights.
3.7 Conclusion
Core pediatric data has many uses that vary according the age, the health needs
and the purpose for which it is needed. Advances in information technology
provide new opportunities and challenges 17 for leveraging the power of these
data in unprecedented ways to improve health care on individual, practice and
population levels.