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AMCHP 2005 Conference Linking Public Health Databases: Developing Partnerships, Infrastructure, and Testing David Hollar, Michael Copeland, Carmen Lozzio,

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Presentation on theme: "AMCHP 2005 Conference Linking Public Health Databases: Developing Partnerships, Infrastructure, and Testing David Hollar, Michael Copeland, Carmen Lozzio,"— Presentation transcript:

1 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

2 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”

3 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).

4 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.

5 AMCHP 2005 Conference Tennessee Child Health Profile

6 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

7 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

8 AMCHP 2005 Conference Project Guidance State Genetics Coordinating Committee: Three Genetic CentersEPSDT – Bureau of TennCare TN Department of Health TEIS – TN Dept. EducationTN Division of Mental Retardation Services Child Development CentersUniversities Council on Developmental Disabilities – TN Dept. Mental Health & Dev. Dis. Consumers Legislators

9 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

10 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

11 AMCHP 2005 Conference Confirmed Positives (2004) Phenylketonuria7 Galactosemia25 Congenital Hypothyroidism57 Hemoglobinopathy54 CAH7 Biotinidase Deficiency5 MCAD4 Acylcarnitines9 Amino Acids1 N = 80,976 births

12 AMCHP 2005 Conference Major Tasks Developing Partnerships Sharing Data Major Successes Setbacks and Challenges Linking Data Implementation

13 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

14 AMCHP 2005 Conference Sharing Data Address Data Silo Issues Demonstrate Project Efficacy Communicate with Data Holders Insure Data Integrity & Security Accountability

15 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

16 AMCHP 2005 Conference Statewide Cooperation

17 AMCHP 2005 Conference Setbacks and Challenges Personnel Changes at the TN Department of Health Technical Issues Solutions Obtained through Teamwork

18 AMCHP 2005 Conference Linking Data Matching Records between Databases Identifier Issues Data Duplications Other Issues Approaches at Solutions

19 AMCHP 2005 Conference Matching Databases DatabasePresent in 1990-1995 Present in 1996-2002 NBS Alone15232 Birth Alone786 NBS-Birth20 (.18)391 (.62) Total113629 Number of Records 3083733 % Female.52 % Minority.19 Stratified Random Samples (16/1 x 10 5 )

20 AMCHP 2005 Conference Matching Identifiers IdentifierMatch ‘90-’95Match ‘96-’02 Child’s Last Name 1.00.903 -.916 Child’s First Name.80.205-.255 Date of Birth.95.995-1.00 Ethnicity1.00.964 Gender1.00.995 Mother’s LN1.00.967-.984 Mother’s FN.90-1.00.951-.989 Mother Maiden.30.266-.274 Mother’s SSN.45-.50.890-.923 County.70 b.95 m.627 b..872 m

21 AMCHP 2005 Conference Implementation Secure Web Browser Development Involvement of Case Managers Case Manager Questionnaire Training Session Pilot Test

22 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.

23 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

24 AMCHP 2005 Conference Project Expansion

25 AMCHP 2005 Conference AHRQ IT Planning Grant

26 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

27 AMCHP 2005 Conference Statewide Cooperation!

28 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.

29 AMCHP 2005 Conference Long – Range Goal

30 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

31 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

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