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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 ConferenceElectronically 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 PlanThe 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 Goals1. 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
TN-CHP (TN
Health Dept.)
Newborn Screening
Hearing Screening
Birth Certificate
Vital Statistics
Case Management Data
UT Developmental & Genetic Ctr.
CSS Case Managers
Pediatric Endocrinologists
at East TN Children’s Hosp.
Link
VPN
Link
Parent Control
Secure Web
AMCHP 2005 ConferencePartners
• UT Department of Medical Genetics• Tennessee Department of Health
Office of Policy, Planning, & AssessmentOffice of Information TechnologyOffice of MCHTennessee State Laboratory
Genetics & Newborn ScreeningNewborn Hearing Screening Program
AMCHP 2005 Conference
Project Development• IRB Approvals from:
UT Graduate School of MedicineTennessee Department of Health
• Project Approval fromTennessee Office of Information Resources, Department of Finance and Administration
AMCHP 2005 ConferenceProject Guidance
• State Genetics Coordinating Committee:
Three Genetic Centers EPSDT – Bureau of TennCareTN Department of Health
TEIS – TN Dept. Education
TN Division of Mental Retardation Services
Child Development Centers
Universities
Council on Developmental Disabilities – TN Dept. Mental Health & Dev. Dis.
Consumers
Legislators
AMCHP 2005 ConferenceChildren 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 7Galactosemia 25Congenital Hypothyroidism
57
Hemoglobinopathy 54CAH 7Biotinidase Deficiency 5MCAD 4Acylcarnitines 9Amino Acids 1
N = 80,976 births
AMCHP 2005 Conference
Major Tasks
• Developing Partnerships• Sharing Data• Major Successes• Setbacks and Challenges• Linking Data• Implementation
AMCHP 2005 ConferenceDeveloping 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
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 ConferenceMatching Databases
Database Present in 1990-1995
Present in1996-2002
NBS Alone 15 232
Birth Alone 78 6
NBS-Birth 20 (.18) 391 (.62)
Total 113 629
Number of Records
308 3733
% Female .52
% Minority .19
Stratified Random Samples (16/1 x 105)
AMCHP 2005 ConferenceMatching Identifiers
Identifier Match ‘90-’95 Match ‘96-’02
Child’s Last Name
1.00 .903 - .916
Child’s First Name
.80 .205-.255
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
AHRQ IT Planning Grant
UT-CHP
Disorders Detected by Newborn Screening
(NBS)
Genetic Disorders Detected by Genetic
Centers
Hearing Loss Confirmed after NHS
Developmental Disabilities Diagnosed by Child Development
Centers
Other Databases
Acute Care Hospital
Child Development
Centers
Centers
Pediatricians
Parents Control
Secure Web
Volunteer e-Health Initiative
Genetic 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
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
Linked to:
Linked to:
Common Anchor Public Health Data for CSHCN: Metabolic Disorders Detected by NBS, Hearing Loss Confirmed after NHS.
Electronic Birth Certificate & Vital
Records
TEIS, TennCare, & Mental
Retardation Databases Plus Developmental
Disability Data on Children from
Centers
UT-CHP
TN-CHP
Comprehensive Expanded TN-CHP
for Children
Volunt. e-
Health Initiativ
e
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) [email protected]
Carmen B. Lozzio, MD, FACMG(865) [email protected]