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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

Utah Department of Health

Annual National Early Hearing Detection and Intervention MeetingAtlanta, GeorgiaFebruary 23-26, 2003

“How to Use EHDI Data”


Workshop focus
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
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
Program Information Welfare Agencies (DSHPSHWA) Data Form

  • 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
Screening Information Welfare Agencies (DSHPSHWA) Data Form

  • Number of live births

  • Total number of infants screened

    • Number screened prior to discharge

    • Number screened after discharge, but before 1 month


Referral information
Referral Information Welfare Agencies (DSHPSHWA) Data Form

  • 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
Case Information Welfare Agencies (DSHPSHWA) Data Form

  • 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


Hospital reporting screening information
Hospital Reporting & Screening Information Welfare Agencies (DSHPSHWA) Data Form

  • 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 Welfare Agencies (DSHPSHWA) Data Form

  • 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
Data items produced by EHDI Data Committee Welfare Agencies (DSHPSHWA) Data Form

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
Data items classifications Welfare Agencies (DSHPSHWA) Data Form

  • 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
Data items outlined Welfare Agencies (DSHPSHWA) Data Form

  • 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 outlined1
Data items outlined Welfare Agencies (DSHPSHWA) Data Form

  • 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 outlined2
Data items outlined Welfare Agencies (DSHPSHWA) Data Form

  • Information about child and family

    • Family (Mother, Father, Relative, Caregiver)

    • Basic Child Information

    • Child's Risk Factors


Data items outlined3
Data items outlined Welfare Agencies (DSHPSHWA) Data Form

  • 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 outlined4
Data items outlined Welfare Agencies (DSHPSHWA) Data Form

  • 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
Data Management Software: Welfare Agencies (DSHPSHWA) Data Form

  • 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


Utah s data linkage and integration charm
Utah’s Data Linkage and Integration Welfare Agencies (DSHPSHWA) Data FormCHARM

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
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
Challenges of collecting newborn data potential for:

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
Newborn Label potential for:

Size = 3 x 4 inches

Statewide distribution began in May 2002


Brn mismatches
BRN Mismatches potential for:

  • 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 potential for:

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


Birth certificate propagation
Birth Certificate Propagation potential for:

June 2002 – January 2003 (65.5%)


Hearing screening propagation
Hearing Screening Propagation potential for:

June 2002 – January 2003 (45.9%)


Two way matches
Two way matches potential for:

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


Three way match
Three way match potential for:

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


Other benefits
Other Benefits potential for:

  • Increased communication and collaboration among the three Programs

  • Identified previously unknown data quality issues

  • Improved partnership and understanding with hospital staff


BDR potential for:

EPSDT

VR

DW

IMM

NMS

NHS

LEAD

CHIP

EI

XIX

WIC


EI potential for:

VR

IMM

Immunization

Registry

NBS

NHS

BDR

DOH

MH

Other

Databases

Medical

Home

Early

Intervention

Integrate

Birth

Cohort


Overview of a query processing scenario

raw query with session id potential for:

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


Overview of a alert scenario

changes potential for:

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


Overview of a differential alert

raw alert with session id potential for:

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


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

- Albert Einstein


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