EHDI and Vital Records Collaborations at the State Level.

1. EHDI and Vital Records Collaborations at the State Level. Utah Department of Health NAPHSIS Annual Meeting Salt Lake City JUNE 2007

2. Proposed EHDI Motion NAPHSIS is encouraged to continue its ongoing coordination and cooperation with CDC-EHDI and other federal agencies to identify means and methods by which states can proceed with planning and implementation of EHDI/ vital records integration/linkage.

3. Utah VR-EHDI CollaborationA Long History • Births screened with family history of hearing loss item since 1979 Birth Certificate Revision. • High-Risk algorithm developed in 1980’s and applied to electronic birth data. • Several publications showing ability of birth certificate items to predict sensorineural hearing loss. • Universal hearing screening called for new forms of collaboration between EHDI and VR.

4. Child Health Advance Records Management (CHARM) • Universal newborn screening registries covered the same population as the birth registry (theoretically). • Managers saw obvious benefits of linkage (death purge, coverage validation). • CHARM middleware proposed to integrate: • Birth and infant death • Newborn Hearing Screening • Newborn Heelstick Screening • Immunization Registry (USIIS) • Early Intervention

5. VR-EHDI Study Application Births VR Point of Service Application CHARM Query Module VR CHARM Agent Study Data CHARM Server VR-EHDI Study Application Phone Calls Letters EHDI CHARM Agent Follow-up EHDI Reporting

6. Initial CHARM Project Birth Record Number • Newborn heelstick “kit” number determined to be assigned earliest in Utah hospitals. • Research on alternative means of populating the BRN yielded bar coded label distribution. • Labels pilot tested in 3 Utah hospitals – focus groups suggested enthusiasm for this method. • Vital records field staff, EHDI staff and Newborn Heelstick staff collaborated to introduce system.

7. Resource Needs For ImplementationBirth Record Number Labels

8. Resource Needs For VR ImplementationRevised Newborn Care Information Worksheets A representative from Vital Records provided birthing facilities and midwives with a supply of revised New Newborn Care worksheet with a set location for the new heelstick kit label.

9. Resource Needs For CHARM ImplementationVideo Message and Letter Provided to All Birth Facilitators ‘A Guide to the Birth Record Number Process’.

10. Population of the Birth Record NumberVital Records Data For 2002 • Roll out October 2002 • 12,054 Live Birth Occurrences (OCT, NOV, DEC) • 11,895 Hospital Occurrences • 159 Home Birth Occurrences • 2 Refused Newborn Screening • 1,682 Birth Certificates Without Newborn Number • 86% Hospital Compliance • 21% Home Birth Compliance • 85% Compliance Rate Overall

11. Population of the Birth Record NumberVital Records Data 2003 Population • 50,527 Live Birth Occurrences • 95% Compliance Rate Overall 2004 Population • 51,853 Live Birth Occurrences • 96% Compliance Rate Overall

12. Population of the Birth Record NumberVital Records Data 2005 Population • 52,272 Live Birth Occurrences • 98% Compliance Rate Overall 2006 Population • 54,529 Live Birth Occurrences • 99% Compliance Rate Overall

13. 2006 Births Identified At-Risk By EDHI Tracking • 54,529 births • 1,198 alerts set for 2006 births • 458 did not return for outpatient screening • 402 have alerts set in EDHI • 356 recommended for evaluation • 175 have not completed outpatient evaluation and have alerts set in EDHI • 936 infants missed initial screening • 621 have alerts set in EDHI

14. 2006 Births With Contact Alerts Made By VR/CHARM • 8 alerts made since March 2007 • All are infants under 2 years of age • 4 missed initial screening • 3 missed outpatient follow up screening • 1 infant deceased 1 parent made follow up call and appointment within 24 hours of receiving notification letter with certified copy of infants birth certificate.

15. Sample Letter Given to Parents Along With Certified Birth CertificateMelodi Robinson-Reynoso01/21/20062006 03935Dear parent/guardian:This letter is to remind you that your child did not pass the newborn hearing screening at birth, and should have an additional hearing test. Newborn hearing screening is usually completed before your baby is discharged from the hospital, but occasionally some children need to have a hearing test done after they leave the hospital. It is very important that your child complete this testing.For help finding hearing screening follow-up services for your child, or if you have already taken your child for a second hearing screening, please call Utah’s Newborn Hearing Screening program at: (801) 584-8215 or toll free 1 (800) 829-8200 option 5You may also call if you have any other questions about newborn hearing screening.Sincerely,Richard S. Harward, DirectorEarly Hearing Detection and Intervention ProgramUtah Department of Health

16. Social Marketing Implications of Birth Certificate Sales • Parents of 25,000 infants and toddlers contact us for Birth Certificates annually • Child Health programs see a “missed opportunity” for outreach to families • Applications for Integrated Information Systems • Potential to reach infants lost to follow-up for newborn hearing screening • Immunization reminders

17. Utah Birth Certificate Customers • 50% of birth certificates sold within 10 years of birth • Almost ¼ of all birth certificates sold within 5 years of birth

18. Certificates Issue to Y2K Birth Cohort • 20% birth certificateswere issued within 2 months after birth • 40% were issued in first year after birth • By mid 2004, 53% of Y2K births had been issued birth certificates

19. VR-EHDI Follow-up Study Population • Utah Births Since 2004 • Requesting Certified Copies of Birth Certificates via • Mail • In-person • On-line • Through the State Office (first year) • Actually issued through Online Issuance of Vital Event Records (OLIVER), a Point of Service Application

20. VR/EHDI collaboration is proven public health service success story!

21. Thank you! Marie Aschliman Information Analyst Office of Vital Records & Statistics Utah Department of Health maschlim@utah.gov