Improving newborn screening laboratory test ordering and result reporting using health information exchange
- Stephen M Downs1,
- Peter C van Dyck2,
- Piero Rinaldo3,
- Clement McDonald4,
- R Rodrey Howell5,
- Alan Zuckerman6,
- Gregory Downing7
- 1Children's Health Services Research Program, Indiana University School of Medicine, Indianapolis, Indiana, USA
- 2Department of Health and Human Services, Health Resources and Services Administration, Washington, DC, USA
- 3Department of Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA
- 4Department of Health and Human Services, The Lister Hill Center for Biomedical Communications, National Library of Medicine, National Institutes of Health, Bethesda, Maryland, USA
- 5Department of Health and Human Services, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland, USA
- 6Georgetown University Medical Center, Washington, DC, USA
- 7Department of Health and Human Services, Personalized Health Care Initiative, Washington, DC, USA
- Correspondence to Dr S M Downs, Indiana University School of Medicine, Health Information and Translational Sciences Building, HS 1020, 410 West 10th Street, Indianapolis, IN 46202-5140, USA; stmdowns{at}iupui.edu
- Received 5 June 2009
- Accepted 6 October 2009
Abstract
Capture, coding and communication of newborn screening (NBS) information represent a challenge for public health laboratories, health departments, hospitals, and ambulatory care practices. An increasing number of conditions targeted for screening and the complexity of interpretation contribute to a growing need for integrated information-management strategies. This makes NBS an important test of tools and architecture for electronic health information exchange (HIE) in this convergence of individual patient care and population health activities. For this reason, the American Health Information Community undertook three tasks described in this paper. First, a newborn screening use case was established to facilitate standards harmonization for common terminology and interoperability specifications guiding HIE. Second, newborn screening coding and terminology were developed for integration into electronic HIE activities. Finally, clarification of privacy, security, and clinical laboratory regulatory requirements governing information exchange was provided, serving as a framework to establish pathways for improving screening program timeliness, effectiveness, and efficiency of quality patient care services.
Footnotes
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Supplementary Appendix listing members of the American Health Information Community Personalized Health Care Subgroup on Newborn Screening is published online only at http://jamia.bmj.com/content/vol17/issue1
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Competing interests None.
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Provenance and peer review Not commissioned; externally peer reviewed.









