Linking Public Health Databases: Developing Partnerships, Infrastructure, and Testing

1. 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. 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. 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. Major Goals • 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. • Make this information available in a secure, accessible format for providers, with permission.

5. Tennessee Child Health Profile

6. 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. 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. Project Guidance • State Genetics Coordinating Committee:

9. 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. 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. Confirmed Positives (2004) N = 80,976 births

12. Major Tasks • Developing Partnerships • Sharing Data • Major Successes • Setbacks and Challenges • Linking Data • Implementation

13. 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. Sharing Data • Address Data Silo Issues • Demonstrate Project Efficacy • Communicate with Data Holders • Insure Data Integrity & Security • Accountability

15. 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. Statewide Cooperation

17. Setbacks and Challenges • Personnel Changes at the TN Department of Health • Technical Issues • Solutions Obtained through Teamwork

18. Linking Data • Matching Records between Databases • Identifier Issues • Data Duplications • Other Issues • Approaches at Solutions

19. Matching Databases

20. Matching Identifiers

21. Implementation • Secure Web Browser Development • Involvement of Case Managers • Case Manager Questionnaire • Training Session • Pilot Test

22. 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. 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. Project Expansion

25. AHRQ IT Planning Grant

26. 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. Statewide Cooperation!

28. 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. Long – Range Goal

30. 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. 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