1. Data and Patient Information Management Systems for Early Hearing Detection and Intervention Programs

3. Good work, but I think we might need just a little more detail right here. EHDI Data and Patient Information Management Then a miracle occurs out Start

4. Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence % of Refers Site Size Per 1000 with Diagnosis Rhode Island (3/93 - 6/94) 16,3951.71 42% Colorado (1/92 - 12/96) 41,9762.56 48% New York (1/96 - 12/96) 27,9381.65 67% Utah (7/93 - 12/94) 4,0122.99 73% Hawaii (1/96 - 12/96) 9,6054.15 98%

5. Tracking "Refers" is a Major Challenge (continued) Initial Rescreen Births Screened Refer Rescreen Refer Rhode Island53,12152,659 5,397 4,575 677 (1/93 - 12/96) (99%) (10%) (85%) (1.3%) Hawaii10,5849,605 1,204 991 121 (1/96 - 12/96) (91%) (12%) (82%) (1.3%) New York28,95127,938 1,953 1,040 245 (1/96-12/96) (96.5%) (7%) (53%) (0.8%)

6. Purposes of an EHDI Data System Screening Research DiagnosisIntervention Medical, Audiological and Educational Program Improvement and Quality Assurance

7. Nature and Use of Information is Different For: •Hospitals •State Departments of Health •National Agencies

8. Types of Variables Included in EHDI Data Management Systems CORE VARIABLES: OPTIONAL VARIABLES: RESEARCH VARIABLES: Collected continuously by everyone. Everyone agrees they would be nice, but some may not have resources to collect (may not be collected continuously). Some people think they are important; others should be aware that some are collecting them.

9. CORE VARIABLES OPTIONAL VARIABLES RESEARCH VARIABLES Infant's last name Medical ID# Date of Birth Mother's Maiden Name Birth Hospital Screening Hospital Inpatient Screen Result Outpatient Screen Result Diagnostic Result Age at Diagnosis ) ) ) ) ) ) ) ) ) ) Time of Birth Sex Nursery Type Birthweight Amplification Age at Amplification ) ) ) ) ) ) Gestational Age Specific Results of Diagnostic Tests Date and Time of Screening Test Type of Delivery Mother's Occupational Noise Exposure Days in NICU JCIH Risk Indicators ) ) ) ) ) ) ) Examples of Possible:

10. Computerized Patient/Data Management for Hospital-based UNHS Programs Tracking/scheduling related to screening, follow-up, diagnosis, and intervention Communication with stakeholders (e.g., parents, physicians, audiologists) Reporting to funding and administrative agencies Program management and quality control 2 2 2 2

11. Statewide EHDI Data System Monitoring program status to identify in-service and technical support needs. Safety net for babies who "fall through the cracks" Assisting with follow-up / enrollment for diagnostic and intervention programs Access to data for public health policy and administrative decisions. Linking to other Public Health Information databases (e.g., Immunization, WIC, Vital Statistics, Early Intervention, Birth Defects),,,,,

12. Examples of Benefits from Linking EHDI Database with Other Public Health Information Systems  An infant referred from the hospital-based UNHS program, but lost to follow-up, could be identified and provided with EHDI services when he or she comes in for the DPT Immunization at eight weeks of age.  By linking the Birth Defects Registry and EHDI data, children with birth defects that make them substantially more likely to develop late onset losses could be monitored and provided with assistance at a much earlier time.  Many of the children who become lost for immunizations or birth defects tracking are the same children who are lost for EHDI. By sharing information, fewer resources are needed to more successfully find and provide services to lost children.  Linking the EHDI and vital statistics allows a population-based system to be created so that every live birth in the state is included in the EHDI system.  Linking EHDI to vital statistics substantially expands the types of epidemiological studies that can be done.

13. Hospitals Most Likely to Participate in a State EHDI Database If: •it provides locally useful data. •gathering data is quick •transfer to the state is trouble-free. •it reduces other reporting requirements.

14. Questions Most Appropriate For: % of births screened Referral rate Prevalence per 1000 Age at identification Delay between identification and amplification 2 2 2 2 2 Cost of screening per baby Sensitivity/specificity of various pass criteria Are there negative side effects associated with UNHS? Risk factors associated with hearing loss 2 2 2 2 National Data BaseTargeted Research

15. Utah EHDI Data System State Department of Health Hospital 1 Hospital 2 Hospital 3.... Hospital 21

17. Iowa EHDI System State Department of Health Hospital 1 Hospital 2.. Hospital 9 Hospital 10 Hospital 11.. Hospital 16 Hospital 17 Hospital 25 Hospital 26.. Hospital 35 Area Education Agency #1 Area Education Agency #2 Area Education Agency #9...

18. Hawaii EHDI System Hospital 1 Hospital 2 Hospital 3.... Hospital State Department of Health Zero-to-Three Project Early Intervention Programs

19. Options for Developing an EHDI Patient/Data Management System Develop your own Modify an existing system (e.g. heelstick data management system) Integrate with Electronic Birth Certificate Purchase an existing system