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American Public Health Association
133rd Annual Meeting & Exposition
December 10-14, 2005
Philadelphia, PA
APHA 2005
4276.0: Tuesday, December 13, 2005 - Board 5

Abstract #110913

Key elements in partnership and infrastructure development for Electronic Child Health Profiles: A description of two parallel, complementary projects

David Hollar, PhD, Carmen Lozzio, MD, Robert L. Eubanks, BS, MS, and Matthew Evans, BS. Department of Medical Genetics, University of Tennesee Graduate School of Medicine, Suite 435, 1930 Alcoa Highway, Knoxville, TN 37920, (865) 544-9030, dhollar@mc.utmck.edu

Several research studies estimate that 13% of American children have a special health care need (CSHCN). In Tennessee, two parallel, complementary electronic child health profiles provide expanded services to CSHCN. The Tennessee Child Health Profile (TN-CHP) is a secure, web accessible data warehouse that targets services for children with genetic or metabolic conditions detected by the state Newborn screening (NBS) program. This database is housed at the Tennessee Department of Health and is accessible by health providers with parental permission. Similarly, the University of Tennessee Child Health Profile (UT-CHP) is a secure, web accessible data warehouse and data sharing engine that targets services for children with other genetic disorders and developmental disabilities. UT-CHP is housed at the University of Tennessee Medical Center and it has the additional capacity of linking data from provider partners across the state, again with appropriate parental permission. The projects, funded by HRSA and AHRQ, are overseen by the State Genetics Coordinating Committee (SGCC), which includes representatives of state health, university medical, and consumer advocacy groups. Project staff worked closely with partners and database experts to overcome barriers faced by similar projects nationwide, including (a) “data silo” issues, (c) differential database formats, (d) correct matching of records between databases, and (e) infrastructure for pilot tests of each data warehouse. The involvement of key administrators and regular meetings with key database stakeholders were critical for smooth communication and project implementation. An ultimate goal of these projects is to link TN-CHP and UT-CHP.

Learning Objectives: At the conclusion of the session, the participant will be able to

Keywords: Children With Special Needs, Information System Integration

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.

Systems of Care for Children and Youth with Special Health Care Needs

The 133rd Annual Meeting & Exposition (December 10-14, 2005) of APHA