Collecting and Reporting EHDI Data in New Jersey

1. Collecting and Reporting EHDI Data in New Jersey Kathryn Aveni, RNC, MPH Early Hearing Detection and Intervention Program, New Jersey Department of Health and Senior Services

2. Goal To ensure early identification and intervention for infants and children with hearing loss, New Jersey is developing a comprehensive EHDI registry that uses existing and new data sources, linking data from the Electronic Birth Certificate (EBC) system, follow-up diagnostic evaluation forms, the Special Child Health Services (SCHS) Registry, and Early Intervention programs. New Jersey Department of Health and Senior Services

3. Legislation • Universal newborn hearing screening was legislated in New Jersey effective January 1, 2002 • Prior regulations required screening of high-risk infants only • Current legislation also requires that the NJ Department of Health and Senior Services (NJDHSS) establish a central registry to provide statistical data, follow-up counseling, intervention and educational services New Jersey Department of Health and Senior Services

4. EHDI Database Inpatient Hearing Screening SCHS Registry EBCSystem DataEntry manual and computer matching weekly downloads Outpatient Screening and Diagnostic Exam Follow-up Forms EI System EHDI Database MS Access Data Entry Linkage being developed Reports New Jersey Department of Health and Senior Services

5. EHDI Database • The EHDI program uses an Access database • EBC information is imported from text files created weekly by the NJ Bureau of Vital Statistics • Follow-up Information submitted on Newborn Hearing Follow-Up Reports is entered into an Access form • Linkages are being made to obtain SCHS and EI data • Database is used to generate statistics and run reports New Jersey Department of Health and Senior Services

6. Electronic Birth Certificate Data • NJ utilizes an Electronic Birth Certificate (EBC) system (Genesis, DOS version) • Weekly text files are provided by Vital Statistics • New or altered EBC records are appended to the EHDI database weekly • Periodic matches are made to the state births file to ascertain babies born at home and out-of-state births New Jersey Department of Health and Senior Services

7. Electronic Birth Certificate Data • Data elements in the EBC include: • Demographics: residence, race, ethnicity, etc. • Hearing Screening information: done (Y/N), test type (ABR/OAE), test results (pass/fail), consent obtained (Y/N) • Risk Factors: Birth weight, Apgar scores, NICU admit, meningitis, stigmata, craniofacial abnormalities, hyperbilirubinemia w/ exchange transfusion, PPHN, TORCH, syphilis, ototoxic drugs, ECMO, mechanical ventilation, family history of hearing loss • Next update to the EBC system (mid-2003) will add ear-specific results, test date, and primary language to accommodate EHDI data elements New Jersey Department of Health and Senior Services

8. Follow-Up Forms New Jersey Department of Health and Senior Services

9. Data Entry - Follow-up Forms New Jersey Department of Health and Senior Services

10. Special Child Health Services Registry • New Jersey legislation enacted in 1983 (NJSA 26:8-40.21) requires that all children with a birth defect diagnosed by 1 year of age be reported to the state Special Child Health Services Registry • Hearing screening legislation requires reporting of any hearing loss (including mild or unilateral loss) for children of any age to the SCHS registry • Registered cases are referred to the county-based case management system within ten days of receipt of registration • Registrations are entered into a SAS database New Jersey Department of Health and Senior Services

11. Early Intervention Database • The EI program uses the FACTORS system for record-keeping, reporting, and coordination of services in the IFSP plan. It is a software system with one database shared by a variety of DHSS agencies • Data elements in FACTORS: • Demographics: Child’s name, address, SSN, DOB, gender, ethnicity, county of residence, phone number, presumptive diagnosis, and primary language • Case Status: IFSP status (i.e. completed, interim), date of referral, reason for case closing, and referral source • Service Coordination Activities: Date of service, type of service, service setting, program providing service, staff providing service • Funding Sources: Third party sources of primary and secondary insurance including Medicaid and special EIS funding • As of 12/1/02, there were 113 children with hearing impairment receiving EI services in New Jersey New Jersey Department of Health and Senior Services

12. EHDI Linkages to SCHS and EI SCHS registry and EI database are administered in the same DHSS division as EHDI, facilitating access to the data Computerized file linkages are currently under development. As an interim step, manual matching of reports of children with hearing loss are generated from the 3 systems Discrepancies are researched and the appropriate database is updated accordingly New Jersey Department of Health and Senior Services

13. CDC Minimum EHDI Data Set - New Jersey Sources • Electronic Birth Certificate: • Demographic and identifier information (DOB, baby’s name, mother’s name, race, ethnicity, etc) • Risk factors • Inpatient screening test type and results • SCHS Registry: • Risk factors • EI Database: • Early intervention services, medical home New Jersey Department of Health and Senior Services

14. Reports • Quarterly reports sent to hospitals (to CEO, MCH Nursing Director, and individuals responsible for conducting inpatient screening): • Summary statistics • compare hospital to statewide totals • compare quarter-to-quarter data • Detailed data • listing of children for whom follow-up testing was required and status of follow-up New Jersey Department of Health and Senior Services

15. Summary Statistics New Jersey Department of Health and Senior Services

16. Detail Report New Jersey Department of Health and Senior Services

17. Impact of Reports • Increased recognition by hospitals of the need to report accurate and complete information • Hospitals want rates to be above average to have a competitive edge • EBC data entry errors reconciled • Recognition of areas where providers were not sending follow-up documentation • Some hospitals have used the reports to make the case to administration of the need for additional screening staff New Jersey Department of Health and Senior Services

18. Future Directions for Data Use • EHDI program is currently investigating using the EBC information on baby’s provider to send letters inquiring about children known to have missed or failed screening or have risk factors for whom follow-up care has not been reported • In the future, the EHDI program will send reminder letters to parents of children with risk factors • Future quarterly reports will be modified to include long-term follow-up report results for children with risk factors for delayed onset hearing loss. New Jersey Department of Health and Senior Services

19. So…..Test Wouldn’t you like to test those ears??? New Jersey Department of Health and Senior Services

20. Document the Results... New Jersey Department of Health and Senior Services

21. …and Ensure Good Hearing New Jersey Department of Health and Senior Services