Annual National Early Hearing Detection and Intervention Meeting

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

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

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

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?

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

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

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 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

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)

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

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

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)

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

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

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

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

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

Data Management Software: • • • AURIS Web Platform (Welligent) e. Screener 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

Utah’s Data Linkage and Integration 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.

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

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

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

NCHARM Update 32, 887 Heelstick Screens 32, 545 Birth Certificates 21, 300 BRN (65. 5%) Birth Record Number (BRN) propagation results June 2002 – January 2003 32, 457 Hearing Screens 15, 578 BRN (48. 0%)

Birth Certificate Propagation June 2002 – January 2003 (65. 5%)

Hearing Screening Propagation June 2002 – January 2003 (45. 9%)

Two way matches 21, 300 Birth Certificates Linked Records 20, 966 (98. 4%) Linked Records 13. 416 (86. 1%) 32, 887 Heelstick Screens Linked Records 15, 113 (97. 0%) 15, 578 Hearing Screens June 02 – January 03

Three way match Heelstick Screens Birth Certificates Linked Records 13, 246 (85. 0%) Hearing Screens Potential Record Match (15, 578 of 32, 887 Births 47. 4%) June 02 – January 03

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

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

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

Overview of a query processing scenario Participating Programs Early Intervention EI Alert Engine raw query with session id final results New Enrollment USIIS Alert Engine retrieve requested information raw result EHDI Alert Engine Newborn Hearing Screening CHARM-II retrieve requested information raw result tra wi nsfo th rm ses ed fin sio qu al n i ery res d ult s Service request EI Agent USIIS Agent Intermediate result st e te u a i d eq e r m ult r ce i e rv nt res e I S EHDI Agent CHARM Server

Overview of a alert scenario Participating Programs for VR Alert t s e u req data Engine more s Vital Records change CHARM-II new aler t EI Agent wi th alert ses sio ni Infant Death USIIS Alert Engine USIIS transformed alert USIIS Agent t r e al EHDI Alert Engine Newborn Hearing Screening transformed alert d EHDI Agent CHARM Server

Overview of a differential alert Participating Programs Early Intervention CHARM-II EI Alert Engine transformed alert EI Agent Im mu n res izat ult ion s USIIS Alert Engine USIIS Immunization USIIS Agent EHDI Alert Engine Newborn Hearing Screening s raw alert with session id z s n o ati m Im transformed alert EHDI Agent i un u tat CHARM Server

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