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
Newborn Screening Link Hearing Screening VPN Link Birth Certificate TN-CHP (TN Health Dept.)
Secure Web
UT Developmental & Genetic Ctr.
CSS Case Managers
Vital Statistics
Case Management Data Parent Control
Pediatric Endocrinologists at East TN 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 TN Department of Health EPSDT – Bureau of TennCare
TEIS – TN Dept. Education
Child Development Centers
TN Division of Mental Retardation Services Universities Consumers
Legislators
Council on Developmental Disabilities – TN Dept. 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 Galactosemia Congenital Hypothyroidism Hemoglobinopathy CAH Biotinidase Deficiency MCAD Acylcarnitines Amino Acids 7 25 57 54 7 5 4 9 1 N= 80,976 births
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 NBS Alone Birth Alone Present in 1990-1995 15 78 Present in 1996-2002 232 6
NBS-Birth 20 (.18) Total 113 Number of 308 Records % Female .52 % Minority .19 Stratified Random Samples (16/1 x 105)
391 (.62) 629 3733
AMCHP 2005 Conference Matching Identifiers
Identifier Child’s Last Name Child’s First Name Date of Birth Ethnicity Gender Mother’s LN Mother’s FN Mother Maiden Mother’s SSN County Match ‘90-’95 1.00 .80 .95 1.00 1.00 1.00 .90-1.00 .30 .45-.50 .70b .95m Match ‘96-’02 .903 - .916 .205-.255 .995-1.00 .964 .995 .967-.984 .951-.989 .266-.274 .890-.923 .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 Newborn Screening (NBS) Acute Care Hospital
UT-CHP
Hearing Loss Confirmed after NHS Genetic Disorders Detected by Genetic Centers Secure Web Genetic Centers
Volunteer e-Health Initiative
Developmental Disabilities Diagnosed by Child Development Centers
Parents Control
Child Development Centers Centers
Other Databases
Pediatricians
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: Electronic Birth Certificate & Vital Records TN-CHP UT-CHP Linked to: TEIS, TennCare, & Mental Retardation Databases Plus Developmental Disability Data on Children from Centers
Volunt. eHealth Initiativ e
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