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John Eichwald, CHARM Program Manager Community and Family Health Services

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

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John Eichwald, CHARM Program Manager Community and Family Health Services

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  1. John Eichwald, CHARM Program Manager Community and Family Health Services Utah Department of Health Annual National Early Hearing Detection and Intervention MeetingAtlanta, GeorgiaFebruary 23-26, 2003 “How to Use EHDI Data”

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

  3. Directors of Speech and Hearing Program in State Health and Welfare Agencies (DSHPSHWA) Data Form 15 questions in 6 reporting areas • Program Information • Screening Information • Referral Information • Case Information • Hospital Reporting & Screening Information • Hearing Loss Type & Severity

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

  5. Screening Information • Number of live births • Total number of infants screened • Number screened prior to discharge • Number screened after discharge, but before 1 month

  6. Referral Information • Number of infants referred for diagnostic audiologic evaluation • Total number of infants who received a diagnostic audiologic evaluation • Number evaluated by 3 months

  7. Case Information • Total 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 diagnosed • average age in months • median age in months • minimum age in months • maximum age in months • Total number of children receiving intervention • number receiving intervention by 6 months

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

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

  10. Data items produced by EHDI Data Committee 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

  11. Data items classifications • 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) • data item recommended for complete state-level data system, including basic data needed for program evaluation • Enhanced data item (n= 204) • additional data item useful for clinicians, enhanced tracking, or research • Presently unclassified (n = 37)

  12. Data items outlined • Information 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

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

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

  15. Data items outlined • Information 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

  16. Data items outlined • Information about hearing screening and follow-up status of child • Types of Communications to Parents and Providers • Summary Report of Status of • Screening • Evaluation • Hearing Loss • Intervention of Child

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

  18. Utah’s Data Linkage and IntegrationCHARM 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.

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

  20. 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

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

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

  23. 32,887 Heelstick Screens 32,545 Birth Certificates 21,300 BRN (65.5%) 32,457 Hearing Screens 15,578 BRN (48.0%) NCHARM Update Birth Record Number (BRN) propagation results June 2002 – January 2003

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

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

  26. Two way matches Linked Records 20,966 (98.4%) 21,300 Birth Certificates 32,887 Heelstick Screens Linked Records 13.416 (86.1%) Linked Records 15,113 (97.0%) 15,578 Hearing Screens June 02 – January 03

  27. Three way match Heelstick Screens Birth Certificates Linked Records 13,246 (85.0%) Potential Record Match (15,578 of 32,887 Births 47.4%) Hearing Screens June 02 – January 03

  28. Other Benefits • Increased communication and collaboration among the three Programs • Identified previously unknown data quality issues • Improved partnership and understanding with hospital staff

  29. BDR EPSDT VR DW IMM NMS NHS LEAD CHIP EI XIX WIC

  30. EI VR IMM Immunization Registry NBS NHS BDR DOH MH Other Databases Medical Home Early Intervention Integrate Birth Cohort

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

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

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

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

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