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CHILD HEALTH PROFILE FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS AAP Annual Meeting Council on Clinical Information Technology-October 28,2007 Carmen B. Lozzio, MD, FACMG Brent Shelton, PhD Rosalyn Lemak MPH, Billy R Hancock, Robert Eubanks, MS and Michelle Liao, MS University of Tennessee-Graduate School of Medicine, Knoxville, TN Department of Medical Genetics, Univ. of Tennessee, Graduate School of Medicine, Knoxville, TN
Disclosures for Carmen B. Lozzio, MD, FACMG A.“I have no relevant financial relationships with the manufacturers (s) of any commercial products (s) and/or provider of commercial services discussed in this CME activity.” B.I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation
GOALS OF THE PROJECT • Improve quality of health care for CSHCN by summarizing all relevant information in an electronic health record called TN Child Health Profile (TN-CHP) • Expand HIT by linking public health databases with genetic, developmental and educational data on each child • Make available to providers and parents/legal guardians a secure, web based TN-CHP
Tennessee Child Health Profile The Tennessee Child Health Profile (TN-CHP) is a web-based e-health record that condenses the highlights of each child’s medical diagnosis, special needs, and recent services and evaluations into a concise, easy-to-read summary, so that authorized providers can quickly determine appropriate next steps. In addition, parents who opt to have their children included in the system will be able to view their children’s profiles online.
TN-CHP GOALS: • Improve health care delivery, coordination of services, continuity of care and timeliness of follow-up • Provide comprehensive medical, developmental and case management data from a single secure website • Allow long term tracking and avoid “lost” cases
Participating Institutions • UT Graduate School of Medicine-Knoxville, Department of Medical Genetics • Memorial Hospital/UHS, Department of Information Service, Knoxville • Vanderbilt University Department of Pediatrics -Genetic Center, Center forChild Development • UT Health Sciences Center (Memphis) Boling Center for Developmental Disabilities and Genetic Center
Additional Collaborations • Tennessee Department of Health • Vanderbilt e-Health Initiative • HRSA- Regional Grant: SERGG • Connections Community of Practice- Public Health Informatics Institute • AHRQ-Resource Center
Statewide implementation of Tennessee Child Health Profile(TN-CHP)
Acute Care Hospital Disorders Detected by TN-CHP Newborn Screening (NBS) Genetic Centers Hearing Loss Secure Confirmed after NHS Web Child Development Genetic Disorders Volunteer r Centers Detected by Genetic e - Health Centers Initiative Parent Control Pediatricians Developmental Disabilities Diagnosed Other by Child Development Databases Local Health Centers Departments TN-CHP AHRQ Grant for Children with Special Healthcare Needs TN-CHILD HEALTH PROFILE
: . Common Anchor Data for CSHCN : : Linked to Linked to Genetic and Electronic Birth Certificate and Vital Records Immunizations WIC EPSDT Lead screening Tennessee Early Intervention (TEIS) TennCare Mental Retardation TN - Dept. of T Child Dev. - Health NBS Centers and NHS Volunteer e - Health Initiative I TN-CHP Comprehensive Child Health Profile - Ultimate Proposed Data Linkage/Sharing Scheme
Identifiers to search NBS/NHS data • TDH number • Mother Social Security number • Mother last and first name, date of birth and county of birth
Short Term Follow-up of presumptive positive results A summary of evaluations and diagnostic tests performed at the comprehensive genetic metabolic centers, sickle cell centers or pediatric endocrinologists is shown by clicking on the box : Confirmatory Test
Click on Confirmatory Test Click on Confirmatory Test Click on Confirmatory Test Click on Confirmatory Test Click on Confirmatory Test
Link Diagnosis to Resources For MCAD the following resources are linked to this diagnosis http://ghr.nlm.nih.gov/condition =mediumchainacylcoenzymeadehydrogenasedeficiency http://www.savebabies.org/disease descriptions/mcad.php
Example of abnormal newborn hearing screening results After state report go to search page and click on Hearing Follow-up (interactive page for provider to record reports)
For educational information on Hearing Loss Go to home page and click on Newborn Hearing Screening
For information on long term follow-up of confirmed diagnosis Go to Home page and click on Child Data (this information requires parental consent)