Annual National Early Hearing Detection and Intervention Meeting Atlanta, Georgia February 23-26, 2003 John Eichwald, CHARM Program Manager Community and Family Health Services Utah Department of Health “How to Use EHDI Data”

Data items identified for use in EHDI systems (DSHPSHWA & Data Items Committee)Data items identified for use in EHDI systems (DSHPSHWA & Data Items Committee) How data items can be used to prepare reports and summariesHow data items can be used to prepare reports and summaries How states use data to summarize EHDI program achievements, goals, and future objectivesHow states use data to summarize EHDI program achievements, goals, and future objectives How data items can be reported to provide key program informationHow data items can be reported to provide key program information WORKSHOP FOCUS:

15 questions in 6 reporting areas Program InformationProgram Information Screening InformationScreening Information Referral InformationReferral Information Case InformationCase Information Hospital Reporting & Screening InformationHospital Reporting & Screening Information Hearing Loss Type & SeverityHearing Loss Type & Severity Directors of Speech and Hearing Program in State Health and Welfare Agencies (DSHPSHWA) Data Form

Does your state have legislation requiring newborn hearing screening?Does your state have legislation requiring newborn hearing screening? Are birthing hospitals / facilities / providers required by the state to report hearing screening informationAre birthing hospitals / facilities / providers required by the state to report hearing screening information –what information are hospitals / facilities/ providers required to report? Program Information

Number of live birthsNumber of live births Total number of infants screenedTotal number of infants screened –Number screened prior to discharge –Number screened after discharge, but before 1 month Screening Information

Number of infants referred for diagnostic audiologic evaluationNumber of infants referred for diagnostic audiologic evaluation Total number of infants who received a diagnostic audiologic evaluationTotal number of infants who received a diagnostic audiologic evaluation –Number evaluated by 3 months Referral Information

Total number of children who were identified with a permanent congenital hearing lossTotal number of children who were identified with a permanent congenital hearing loss –screened through a newborn hearing screening program Age range of children when they are diagnosedAge range of children when they are diagnosed –average age in months –median age in months –minimum age in months –maximum age in months Total number of children receiving interventionTotal number of children receiving intervention –number receiving intervention by 6 months Case Information

Number of birthing hospitals / facilitiesNumber of birthing hospitals / facilities Number with Universal Newborn Hearing ScreeningNumber with Universal Newborn Hearing Screening Does your state define a UNHS birthing hospital / facility by the percent of infants screenedDoes your state define a UNHS birthing hospital / facility by the percent of infants screened How do birthing hospitals / facilities record and report hearing screening resultsHow do birthing hospitals / facilities record and report hearing screening results Hospital Reporting & Screening Information –EBC –Blood Spot Cards –OZ System –Neometrics –Auris –Hi-Track –Web-Based System –Custom/State Developed –Other (please specify)

Hearing Loss Type & Severity Does your state use the DSHPSHWA system to classify the severity of a hearing loss?Does your state use the DSHPSHWA system to classify the severity of a hearing loss? Please complete the following two charts for children with PCHLPlease complete the following two charts for children with PCHL

Intended to be a comprehensive list of data items that can be used as a guide for states or facilities developing a newborn hearing screening tracking system Data items produced by EHDI Data Committee

Minimum data item (n = 78)Minimum data item (n = 78) –data item recommended for all state data systems –the set of data items that are required for follow-up on universal newborn hearing screening and for full reporting on national EHDI goals Core data item (n = 196)Core data item (n = 196) –data item recommended for complete state-level data system, including basic data needed for program evaluation Enhanced data item (n= 204)Enhanced data item (n= 204) –additional data item useful for clinicians, enhanced tracking, or research Presently unclassified (n = 37)Presently unclassified (n = 37) Data items classifications

Information about facilities (places) and programsInformation about facilities (places) and programs –Birthing Hospital or Facility –Hearing Testing / Evaluation Clinic –Hearing Loss Follow-up Facility –Hearing Loss Follow-up Program –Genetic Testing Laboratory Data items outlined

Information about providersInformation about providers –Person Conducting Hearing Screening (Screener) –Audiologist –Physician –Genetic Counselor –Case Manager For Child With Hearing Loss –Hearing Loss Intervention Specialist Data items outlined

Information about child and familyInformation about child and family –Family (Mother, Father, Relative, Caregiver) –Basic Child Information –Child's Risk Factors Data items outlined

Information about eventsInformation about events –Birth Hospitalization –Screening (First or Re-screen) Tests –Diagnostic Hearing Evaluation –Early Intervention Services –Medical Evaluation and Medical Intervention –Genetic Testing and Genetic Counseling –Speech and Language Development Data items outlined

Information about hearing screening and follow-up status of childInformation about hearing screening and follow-up status of child –Types of Communications to Parents and Providers –Summary Report of Status of ScreeningScreening EvaluationEvaluation Hearing LossHearing Loss Intervention of ChildIntervention of Child Data items outlined

AURIS Web Platform (Welligent)AURIS Web Platform (Welligent) eScreener Plus (OZ Corporation)eScreener Plus (OZ Corporation) HI*TRACK™ Software (NCHAM)HI*TRACK™ Software (NCHAM) Limelight TechnologiesLimelight Technologies NeometricsNeometrics QSTVRS (QS Technologies)QSTVRS (QS Technologies) Soundata (Pediatrix Medical Group)Soundata (Pediatrix Medical Group) Custom or State DevelopedCustom or State Developed EBC or Blood Spot CardsEBC or Blood Spot Cards Data Management Software:

CHARM stands for “Child Health Advanced Record Management” The primary goal of CHARM is to create an electronic “child health profile” containing public health information. One of the first objectives is to link newborn hearing screening records, heelstick screening records, and birth certificates. Utah’s Data Linkage and Integration CHARM

If newborn data can be reliably shared it increases the potential for: decreasing redundant data collection and reporting in Utah hospitals decreasing redundant data collection and reporting in Utah hospitals increasing the accuracy of the data being collected increasing the accuracy of the data being collected locating infants missed in screening locating infants missed in screening identifying infants lost to follow-up identifying infants lost to follow-up not contacting families with infants who have died not contacting families with infants who have died Improving the health status of newborns Improving the health status of newborns

Challenges of collecting newborn data Naming Issues: – first names unassigned – “baby boy” –last name – paternity –adoptions –maternal name Nursery Issues: – pre-term delivery –intensive care admissions –transfers –early discharges –screening staff duties –staff turnover

Newborn Label Size = 3 x 4 inches Statewide distribution began in May 2002

Reasons why Birth Record Number might not match between databases: BRN not propagated to a database BRN not propagated to a database invalid BRN invalid BRN duplicate BRN duplicate BRN different BRN between databases different BRN between databases BRN Mismatches

Birth Record Number (BRN) propagation results June 2002 – January ,545 32,545BirthCertificates 21,300 21,300BRN(65.5%) 32,457 32,457HearingScreens 15,578 15,578BRN (48.0%) 32,887 Heelstick HeelstickScreens NCHARM Update

June 2002 – January 2003 (65.5%) Birth Certificate Propagation

June 2002 – January 2003 (45.9%) Hearing Screening Propagation

21,300 21,300BirthCertificates 32,887 32,887HeelstickScreens 15,578 15,578HearingScreens LinkedRecords20,966(98.4%) LinkedRecords15,113 (97.0%) (97.0%)LinkedRecords13.416(86.1%) June 02 – January 03 Two way matches

Potential Record Match (15,578 of 32,887 Births 47.4%) BirthCertificates HeelstickScreens HearingScreens LinkedRecords13,246(85.0%) June 02 – January 03 Three way match

Other Benefits Increased communication and collaboration among the three ProgramsIncreased communication and collaboration among the three Programs Identified previously unknown data quality issuesIdentified previously unknown data quality issues Improved partnership and understanding with hospital staffImproved partnership and understanding with hospital staff

VR NMSNHS EI BDRIMM LEADWIC XIXCHIP DWEPSDT

EIIMMVR NBS BDR NHS IntegrateBirthCohort EarlyIntervention DOH OtherDatabases MH MedicalHome ImmunizationRegistry

Overview of a query processing scenario Early Intervention Early Intervention USIIS Newborn Hearing Screening Newborn Hearing Screening EI Agent EI Alert Engine EI Alert Engine USIIS Alert Engine USIIS Alert Engine USIIS Agent EHDI Alert Engine EHDI Alert Engine EHDI Agent CHARM Server CHARM Server Participating Programs CHARM-II final results transformed query with session id final results Service request raw result raw query with session id Intermediate result Intermediate result retrieve requested information New Enrollment

Overview of a alert scenario Vital Records USIIS Newborn Hearing Screening Newborn Hearing Screening EI Agent VR Alert Engine VR Alert Engine USIIS Alert Engine USIIS Alert Engine USIIS Agent EHDI Alert Engine EHDI Alert Engine EHDI Agent CHARM Server CHARM Server Participating Programs CHARM-II alert with session id alert transformed alert Infant Death changes request for more data new alert

Overview of a differential alert Early Intervention Early Intervention USIIS Newborn Hearing Screening Newborn Hearing Screening EI Agent EI Alert Engine EI Alert Engine USIIS Alert Engine USIIS Alert Engine USIIS Agent EHDI Alert Engine EHDI Alert Engine EHDI Agent CHARM Server CHARM Server Participating Programs CHARM-II Immunization results raw alert with session idImmunization transformed alert Immunization status

“Not everything that can be counted counts, and not everything that counts can be counted” - Albert Einstein - Albert Einstein