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

Proposed EHDI Motion N APHSIS 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.

Utah VR-EHDI Collaboration A Long History B irths screened with family history of hearing loss item since 1979 Birth Certificate Revision. H igh-Risk algorithm developed in 1980’s and applied to electronic birth data. S everal publications showing ability of birth certificate items to predict sensorineural hearing loss. U niversal hearing screening called for new forms of collaboration between EHDI and VR.

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

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

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

Resource Needs For Implementation Birth Record Number Labels

Resource Needs For VR Implementation Revised 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.

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

Population of the Birth Record Number Vital Records Data For 2002 Roll out October ,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

Population of the Birth Record Number Vital Records Data 2003 Population 50,527 Live Birth Occurrences 95% Compliance Rate Overall 2004 Population 51,853 Live Birth Occurrences 96% Compliance Rate Overall

Population of the Birth Record Number Vital Records Data 2005 Population 52,272 Live Birth Occurrences 98% Compliance Rate Overall 2006 Population 54,529 Live Birth Occurrences 99% Compliance Rate Overall

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

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.

Sample Letter Given to Parents Along With Certified Birth Certificate Melodi Robinson-Reynoso 01/21/ Dear 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) or toll free 1 (800) option 5 You may also call if you have any other questions about newborn hearing screening. Sincerely, Richard S. Harward, Director Early Hearing Detection and Intervention Program Utah Department of Health

Social Marketing Implications of Birth Certificate Sales P arents of 25,000 infants and toddlers contact us for Birth Certificates annually C hild Health programs see a “missed opportunity” for outreach to families A pplications for Integrated Information Systems P otential to reach infants lost to follow-up for newborn hearing screening I mmunization reminders

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

Certificates Issue to Y2K Birth Cohort 20% birth certificates were 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

VR-EHDI Follow-up Study Population U tah Births Since 2004 R equesting Certified Copies of Birth Certificates via – Mail – In-person – On-line T hrough the State Office (first year) A ctually issued through Online Issuance of Vital Event Records (OLIVER), a Point of Service Application

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

Thank you! Marie Aschliman Information Analyst Office of Vital Records & Statistics Utah Department of Health