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AMCHP 2005 Conference
Linking Public Health Databases:
Developing Partnerships,
Infrastructure, and Testing
David Hollar, Michael Copeland,
Carmen Lozzio, Teresa Blake, Lee
Fleshood, Matthew Evans, Robert
Eubanks, & Ramona Lainhart*
University of Tennessee Department of
Medical Genetics
*Tennessee Department of Health
AMCHP 2005 Conference
Electronically Linked Health
Databases
• Improve health care delivery
• Provide single secure website access
• Provide comprehensive medical data
• Reduce redundancies & medical errors
• Long-term tracking
• Avoid “lost cases”
AMCHP 2005 Conference
Tennessee Genetics Plan
The purpose of the statewide genetics plan is to
integrate the Newborn Genetic Screening
(NBS) Program and other genetic services into
the Information Technology (IT) Plan to assure
an adequate public health infrastructure and to
coordinate genetic services with all other
programs for children with special health
care needs (CSHCN).
AMCHP 2005 Conference
Major Goals
1. Develop an electronic child health
profile that links data from Newborn
Genetic/Metabolic Screening, Hearing
Screening, Birth Certificate, and Vital
Records for all children born in
Tennessee.
2. Make this information available in a
secure, accessible format for
providers, with permission.
AMCHP 2005 Conference
Tennessee Child Health Profile
UT
Newborn Screening
Link Developmental
& Genetic Ctr.
VPN
Hearing Screening
Link
Birth Certificate TN-CHP CSS Case
(TN Secure
Web Managers
Health
Vital Statistics Dept.)
Case Management Pediatric
Data Endocrinologists
Parent at East TN
Control Children’s Hosp.
AMCHP 2005 Conference
Partners
• UT Department of Medical Genetics
• Tennessee Department of Health
Office of Policy, Planning, & Assessment
Office of Information Technology
Office of MCH
Tennessee State Laboratory
Genetics & Newborn Screening
Newborn Hearing Screening Program
AMCHP 2005 Conference
Project Development
• IRB Approvals from:
UT Graduate School of Medicine
Tennessee Department of Health
• Project Approval from
Tennessee Office of Information
Resources, Department of
Finance and Administration
AMCHP 2005 Conference
Project Guidance
• State Genetics Coordinating Committee:
Three Genetic Centers EPSDT – Bureau of
TennCare
TN Department of Health
TEIS – TN Dept. Education TN Division of Mental
Retardation Services
Child Development Centers Universities
Council on Developmental Consumers
Disabilities – TN Dept.
Legislators
Mental Health & Dev. Dis.
AMCHP 2005 Conference
Children with Genetic/Metabolic
Conditions in Tennessee, 2003
• n = 125 confirmed (78,841 live births)
• Six Conditions:
Phenylketonuria
Congenital Hypothyroidism
Hemoglobinopathies
Galactosemia
Congenital Adrenal Hyperplasia
Biotinidase Deficiency
AMCHP 2005 Conference
Conditions Added in 2004
• Homocystinuria
• Maple Syrup Urine Disease (MSUD)
• Medium Chain Acyl CoA Dehydrogenase
Deficiency (MCADD)
• 50 Other Amino Acid, Organic Acid, &
Fatty Acid Oxidation Disorders
AMCHP 2005 Conference
Confirmed Positives (2004)
Phenylketonuria 7
Galactosemia 25 N=
80,976
Congenital Hypothyroidism 57
births
Hemoglobinopathy 54
CAH 7
Biotinidase Deficiency 5
MCAD 4
Acylcarnitines 9
Amino Acids 1
AMCHP 2005 Conference
Major Tasks
• Developing Partnerships
• Sharing Data
• Major Successes
• Setbacks and Challenges
• Linking Data
• Implementation
AMCHP 2005 Conference
Developing Partnerships
• Identify Key Holders of Data
• Identify Liaison Experts
• Communication with Directors
• Work through Influential Supporters
• Clearly Outline Project & Benefits
• Identify & Address Partner Needs
• Maintain Intensity & Momentum
AMCHP 2005 Conference
Sharing Data
• Address Data Silo Issues
• Demonstrate Project Efficacy
• Communicate with Data Holders
• Insure Data Integrity & Security
• Accountability
AMCHP 2005 Conference
Major Successes
• Data Sharing Agreements
• Linkages for Three Databases
• OIR Project Approval
• Two IRB Approvals
• Involvement of Case Managers
• AHRQ IT Planning Grant Award
• Volunteer e-Health Collaboration
AMCHP 2005 Conference
Statewide Cooperation
AMCHP 2005 Conference
Setbacks and Challenges
• Personnel Changes at the TN
Department of Health
• Technical Issues
• Solutions Obtained through Teamwork
AMCHP 2005 Conference
Linking Data
• Matching Records between Databases
• Identifier Issues
• Data Duplications
• Other Issues
• Approaches at Solutions
AMCHP 2005 Conference
Matching Databases
Database Present in Present in
1990-1995 1996-2002
NBS Alone 15 232
Birth Alone 78 6
NBS-Birth 20 (.18) 391 (.62)
Total 113 629
Number of 308 3733
Records
% Female .52
% Minority .19
Stratified Random Samples (16/1 x 105)
AMCHP 2005 Conference
Matching Identifiers
Identifier Match ‘90-’95 Match ‘96-’02
Child’s Last 1.00 .903 - .916
Name
Child’s First .80 .205-.255
Name
Date of Birth .95 .995-1.00
Ethnicity 1.00 .964
Gender 1.00 .995
Mother’s LN 1.00 .967-.984
Mother’s FN .90-1.00 .951-.989
Mother Maiden .30 .266-.274
Mother’s SSN .45-.50 .890-.923
County .70b .95m .627b ..872m
AMCHP 2005 Conference
Implementation
• Secure Web Browser Development
• Involvement of Case Managers
• Case Manager Questionnaire
• Training Session
• Pilot Test
AMCHP 2005 Conference
Methods of Evaluation I
• Percentage confirmed matches on
subsequent passes
• Percentage of live born infants screened
• Percentage of live born infants adequately
screened
• Timeliness of diagnoses & timeliness of
treatments
• Long-term assessment of infants
with positive conditions for
developmental delay, morbidity, etc.
AMCHP 2005 Conference
Methods of Evaluation II
• Percentage of false positives per test
• Percentage of infants with pre-birth
identified medical home
• Percentage of public providers submitting
data to the integrated database
• Percentage of private providers submitting
data to the integrated database
• User satisfaction with TN-CHP
• Parental satisfaction
AMCHP 2005 Conference
Project Expansion
AMCHP 2005 Conference
AHRQ IT Planning Grant
Disorders Detected by Acute Care
Newborn Screening Hospital
(NBS)
UT-CHP
Hearing Loss Genetic
Confirmed after NHS Secure Centers
Web
Genetic Disorders Volunteer
Detected by Genetic
e-Health Child
Centers
Initiative Parents Development
Control Centers
Developmental
Disabilities Diagnosed Centers
by Child Development Other Databases Pediatricians
Centers
AMCHP 2005 Conference
AHRQ Partners
• UT Department of Medical Genetics, Knoxville
• UHS, Department of Information Services
• Vanderbilt University Department of Pediatrics
-Genetic Center, Center for Child Development,
& Department of Biomedical Informatics
• UT Health Sciences Center (Memphis)
Boling Center for Developmental
Disabilities and Genetic Center
AMCHP 2005 Conference
Statewide Cooperation!
AMCHP 2005 Conference
Additional Collaborations
• SERGG Regional Grant
• PHII Connections Community of Practice
• Public Health Data Standards Consortium
• Correspondence with other HRSA and
AHRQ grantees, EHDI projects, etc.
AMCHP 2005 Conference
Long – Range Goal
Common Anchor Public Health Data for CSHCN: Metabolic Disorders
Detected by NBS, Hearing Loss Confirmed after NHS.
Linked to: Linked to:
TN-CHP UT-CHP
Electronic Birth TEIS, TennCare,
Certificate & Vital & Mental
Records Volunt. Retardation
e- Databases Plus
Health Developmental
Initiativ Disability Data on
Children from
e
Centers
Comprehensive
Expanded TN-CHP
for Children
AMCHP 2005 Conference
Acknowledgments
• Members of the State Genetics Coordinating
Committee
• Staff at the Tennessee Departments of Health
& Education, TN Early Intervention Services
• Support:
HRSA Grant # 1 U93 MC 00230-01 and
AHRQ Grant #1 P20 HS015426-01
AMCHP 2005 Conference
For More Information
• Contact:
David W. Hollar, Jr., PhD
(865) 544-6669
dhollar@mc.utmck.edu
Carmen B. Lozzio, MD, FACMG
(865) 544-9031
clozzio@mc.utmck.edu
