1. HI*TRACK: Solving Newborn Hearing Screening Tracking Issues
Karl R. White, PhD
National Center for Hearing Assessment and Management
Utah State University

2. Percentage of Newborns Screened Prior to Discharge

3. Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs
Sample Prevalence
Site Size Per 1000
Rhode Island (3/93 - 6/94) 16,
Colorado (1/ /96) 41,
New York (1/ /96) 27,
Utah (7/ /94) ,
Hawaii (1/ /96) 9,

4. Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs
Sample Prevalence % of Refers
Site Size Per with Diagnosis
Rhode Island (3/93 - 6/94) 16, %
Colorado (1/ /96) 41, %
New York (1/ /96) 27, %
Utah (7/ /94) , %
Hawaii (1/ /96) 9, %

5. Tracking "Refers" is a Major Challenge
(continued)
Initial Rescreen
Births Screened Refer Rescreen Refer
Rhode Island
53,121
52,659
5,397
4,575
677
(1/ /96)
(99%)
(10%)
(85%)
(1.3%)
Hawaii
10,584
9,605
1,204
991
121
(1/ /96)
(91%)
(12%)
(82%)
(1.3%)
New York
28,951
27,938
1,953
1,040
245
(1/96-12/96)
(96.5%)
(7%)
(53%)
(0.8%)

6. Examples of JCIH Benchmarks and Quality Indicators
% of infants screeened during birth admission
% of infants who do not pass birth admission screen
% of families who refuse hearing screeening
% of infants and families whose care is coordinated between the medical home and related professionals
% of infants with completed audilogic and medical evaluations by 3 months of age
% of infants with confirmed hearing loss :
referred for otologic evaluation
that have a signed IFSP by 6 months of age
% of infants with hearing aids receiving audiologic monitoring at least every 3 months

7. Data Required for MCHB Project Annual Reports
# of infants screened (95%)
# of infants referred for audiologic diagnosis
# and age of infants receiving audiologic diagnosis (before 3 months)
# of infants
in a medical home
connected with family-to-family support
# and age at which identified infants are enrolled in early intervention services (before 6 months)

8. CDC EHDI Reporting System
# of live births
# screened prior to discharge
# screened before 1 month of age
# referred from screening for audiologic evaluation
# with audiological diagnosis by 3 months of age
# with permanent congenital hearing loss (0-7 years)
Hearing loss classified by type, degree and laterality
Average/median age at which hearing loss diagnosised
# of infants receiving intervention by 6 months of age
Number of live births reported by calendar year by the state entity responsible for reporting vital statistics
Number of infants receiving a physiological hearing screening test bilaterally prior to discharge.
The number (in addition to those screened prior to discharge) screened before 1 month of age
Diagnostic audiological evaluation defined as the use of a battery of audiologic procedures to determine the type of hearing loss by obtaining frequency and intensity specific information on each ear.

9. Healthy People 2010
Increase to 100% the proportion of newborns served by state-sponsored early hearing detection and intervention programs
Provide 100% of newborns access to screening
Provide follow-up audiologic and medical evaluations before 3 months for infants requiring care
Provide access to intervention before 6 months for infants who are hard of hearing and deaf

10. Good work, but I think we might need just a little more
OPERATING SUCCESSFUL EHDI PROGRAMS
out
Then a
miracle
occurs
Start
Good work,
but I think we might
need just a little more
detail right here.

11. Purposes of an EHDI Data System
Research
Program Improvement
and Quality Assurance
Screening
Diagnosis
Intervention
Medical, Audiological and
Educational

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

13. 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, quality control, and
risk management

14. 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)

15. 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.

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

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

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

19. 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
It reduces risk

20. Who Needs the Data? Screeners and program coordinators
Hospital administrators
Health care providers
Public Health officials

21. What Type of Data is Needed?
CORE VARIABLES:
Collected continuously by
everyone.
OPTIONAL VARIABLES:
Everyone agrees they would be
nice, but some may not have
resources to collect (may not be
collected continuously).
RESEARCH VARIABLES:
Some people think they are
important; others should be
aware that some are collecting
them.

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

23. Options for Developing an EHDI Patient/Data Management System
Develop your own
Modify an existing system, for example
“Heelstick” data management system
Electronic Birth Certificate (EBC)
Purchase an existing system
Whatever system you choose, should it be web- based?

24. Combining EHDI Data Management with Existing Systems is Logical Because :
Combining EHDI with Heelstick is attractive because:
Both do initial screening of babies in the nursery prior to hospital discharge
Both do 2nd stage or outpatient screening for a significant number of babies
Poor follow-up is currently the biggest challenge for EHDI programs
Heelstick programs have been extremely successful with follow-up
The infrastructure for Heelstick follow-up system is already in place
Combining with Electronic Birth Certificate is an attractive option because the EBC is:
Legally required for every birth
Contains wealth of demographic and medical data
EHDI information management looks deceptively simple at first glance.

25. North Carolina Heelstick Form

26. Heelstick Screening Procedures
Small sample of blood collected and put on Heelstick form (filter paper) prior to discharge, but after 24 hours of age
Form sent to laboratory within hours or days for analysis
A significant number of initial screenings need to be redone because of poor technique
Results reported to State Follow-up Coordinator who contacts physicians and parents about “abnormals” (urgency depends on disease)
Depending on state, about 1% to 2 % are abnormal. Additional blood is collected for these babies to confirm the screening result (diagnosis).
EHDI information management looks deceptively simple at first glance.

27. Typical UNHS Screening Protocols (example for 1,000 newborns)
Hearing Loss=3
Normal Hearing=7
Inpatient
Screening
Pass=920
Fail=80
Outpatient
n=80
Diagnosis
n=10
Pass=90
Fail=10
2 Stage
OAE
Hearing Loss=3
Normal Hearing=37
Diagnosis
n=40
Inpatient
Screening
Fail=40
Pass=960
1 Stage
AABR
Diagnosis
n=20
Inpatient
Screening
Pass=980
Fail=20
Hearing Loss=3
Normal Hearing=17
OAE / AABR
1 Stage

28. Inpatient Hearing Screening
Multiple attempts are very common
Different screeners often attempt the same baby
Screening can be done any time from shortly after birth to minutes before discharge
Use of both OAE and AABR becoming more common
Successful management requires more than knowing whether baby passed or referred

29. Outpatient Screening
Depending on protocol, outpatient screening required for 2-10% of all births
Usually done between 2-14 days following discharge
Sometimes done at a different location from inpatient screening
Requires coordination with baby’s doctor

30. Audiological Diagnosis
Often done at location other than screening hospital
Requires coordination with baby’s doctor and ENT
One visit often not sufficient
Advantages in coordinating with Part C, IDEA Child Find activities

31. Enrollment in Early Intervention
Continued need for data management and tracking because:
Early Intervention requires ongoing, multidisciplinary services
Coordination is needed with the baby’s medical home
Important to link late-identified children with original screening results

32. Issues to Consider Before Combining EHDI and Heelstick
Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspot
NBHS screening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic procedures
When, where, how, and by whom NBHS screening is done is quite different than Heelstick

33. Issues to Consider Before Combining EHDI with Heelstick or EBC
Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspot
Screening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic procedures
When, where, how, and by whom NBHS screening is done is quite different than Heelstick
Timing of data collection and entry
Ideal if Heelstick or EBC is always followed by NBHS, but it doesn’t happen that way
When are you finished with NBHS?
How are outpatient NBHS screenings updated?

34. Issues to Consider Before Combining EHDI with Heelstick or EBC (continued)
Will hospital’s staff have timely access to the data for program improvement and follow-up?
Screener performance
Scheduling outpatient screening, referring for Diagnostic Assessments, confirmed hearing loss
Can hospitals update data
Who decides which data is most accurate?

35. Issues to Consider Before Combining EHDI with Heelstick or EBC (continued)
Will the Heelstick or EBC form include all the “fields” you need?
Heelstickor EBC forms with NBHS fields usually only include type of test, left ear result, right ear result. Do you need….?
Screener ID
Mother’s language
Type of insurance
Who decides if and when you can add or modify “fields”
Hearing loss risk factors
Results for multiple tests or attempts
Outpatient screening results

36. Issues to Consider Before Combining EHDI with Heelstick or EBC (continued)
Will the Heelstick or EBC form include all the “fields” you need?
Heelstick and EBC forms with NBHS fields usually only include type of test, left ear result, right ear result. Do you need….?
Screener ID
Mother’s language
Type of insurance
Who decides if and when you can add or modify “fields”
Can you transfer data from screening machines directly to the Heelstick or EBC?
Duplicate data entry
Transmission errors
Hearing loss risk factors
Results for multiple tests or attempts
Outpatient screening results

37. Issues to Consider Before Combining EHDI with Heelstick or EBC (continued)
Combining EHDI with Heelstick or EBCisn’t free
Costs of modifying and reprinting forms is very small
Cost of adding fields to Heelstick follow-up software and generating new letters / reports can be substantial ($50K+)
Cost of developing software to process EBC data for EHDI data management system can be even more expensive
Costs and risks of duplicate data entry are significant (screener records info, transfers to Heelstick form, lab personnel keypunch)

38. Issues to Consider Before Combining EHDI with Heelstick or EBC (continued)
Follow-up of babies requires substantial personnel resources whether or not NBHS is combined with Heelstick or EBC
Although it varies widely, Heelstick follow-up typically requires about 1 FTE per 30,000 births expect similar resources for NBHS
2% to 10% of babies will require some type of follow-up for NBHS
Do Heelstick follow-up staff understand EHDI issues well enough to do follow-up?

39. Issues to Consider Before Combining EHDI with Heelstick or EBC (continued)
Sources of information are quite different for diagnostic confirmation of screening results
For Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick Coordinator
For NBHS: Information is reported in various forms to
Physician, hospital, and / or state EHDI coordinator
from hospitals, community-based audiologists, physicians

40. Issues to Consider Before Combining EHDI with Heelstick or EBC (continued)
Sources of information are quite different for diagnostic confirmation of screening results
For Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick Coordinator
For NBHS: Information is reported in various forms to hospital or state EHDI coordinator from hospitals, community-based audiologists, physicians

41. Is a Web-based System the Answer?
Access?
Speed?
Linkages with existing data?
Flexibility?
Security?

42. Demonstrations of: Stand Alone system Web-based system
(Demos of HI*TRACK are also available at

43. Thin-Client Architecture
Benefits
Issues
Installation on the client machine is not required.
Software updates do not require any maintenance on the client machines.
Cheaper to deploy.
Reduced user interface functionality.
Slower response times for user interactions.
If network stops, work stops.
Difficult to integrate with third party screening software.
Database Server
Thin Client
Software = UI (user interface) is Web Browser
Presentation & Business Rule Layers

44. Medium-Client Architecture
Benefits
Issues
Better responsiveness than thin-client.
More feature rich user interface.
“Business rule” changes require no change on clients.
Better integration with third party screening software.
Client requires software to be installed.
If network stops, work stops.
User interface changes require the clients to be updated.
Database Server
Medium Client
Business Rule Layer
Software = UI & Presentation

45. Fat-Client Architecture
Benefits
Issues
Full feature user interface.
Even better user responsiveness.
Good integration with third party screening software.
Software changes require the clients to be updated.
If network stops, some features not available
Database Server
Fat Client
Software = UI & Presentation & Business Rules

46. Stand-alone Architecture
Benefits
Issues
Full feature user interface.
Best user responsiveness.
Work is not dependent on the network.
Best integration with third party screening software.
Software changes require updates to be installed.
Can only be accessed from the user’s machine
Stand
Alone
Software = UI & Presentation & Business Rules
and Data Base

47. Good work, but I think we might need just a little more
OPERATING SUCCESSFUL EHDI PROGRAMS
out
Then a
miracle
occurs
Start
Good work,
but I think we might
need just a little more
detail right here.