1. Tracking and Data Management
Technical Assistance Workshop
for
Universal Newborn Hearing Screening and Intervention
Margaret Lubke, Ph.D.
National Center for Hearing Assessment and Management
Salt Lake City, Utah
April 30 and May 1, 2001

2. Data and Tracking System *
Description of data and tracking system
Description of how the system relates to: (shares information with)
other state databases
metabolic screening system
CDC’s EHDI reporting system
*(Application Guidance: Attachment B: Application Criteria
Item 2 (e) page 21)

3. Evaluation Plan Successes and Failures Screening Diagnostics
Inpatient Screening
Outpatient Screening
Diagnostics
Types of Assessment
Interventions
Amplification
Early Intervention services (IDEA-Part C)
Other
*(Application Guidance Attachment B: Application Criteria Item 6,
page 22)

4. Annual Data Report Number of infants screened (95%)
Number of infants referred for audiologic diagnosis
Number and age of infants receiving audiologic diagnosis (before 3 months)
Number of infants
in a medical home
Referral to family-to-family support
Number and age at which identified infants are enrolled in early intervention services (before 6 months)
*(Application Guidance Attachment B: Application Criteria Item 6, page 22)

5. JCIH Principle #7 (p.11)
Use information systems to measure and report the effectiveness of EHDI services.
Remove identifying information whenever possible
Use aggregate state and national data to measure and track the impact of EHDI programs on public health and education

6. JCIH Principle #8 (p.11) EHDI programs provide data to:
Monitor quality
Demonstrate compliance with legislation and regulations
Determine fiscal accountability and cost effectiveness
Support reimbursement for services
Mobilize and maintain community support

7. Use of Information Management Systems
Improve services to infants/families
Assess quality of screening, evaluation, and demographics
Facilitate collection of data on demographics

8. “Begin with the End in Mind”
Child level reports
Summary reports
User-defined reports
Tickler reports
Letters to Parents and Physicians

9. Child Level Reports Inpatient Results (include percentages)
Outpatient Results (include percentages)
Diagnostic Results (include numbers, percentages, and age of child at time of diagnosis-3months)
Intervention Report (include numbers, percentages, and age of child at time of diagnosis-6months)
Hearing Loss Tracking Report

10. Summary Reports CDC Report Reports by screeners
Reports for individual physicians

11. User Defined Reports Querying the databases
The computer system should remember your queries

12. Letters Parents Physicians Languages
Batch printing vs Individual printing capability

13. Tickler Reports Babies who need outpatient screening
Babies who need diagnostic evaluation
Risk Indicators
Other Recommendations

14. Data Clusters Baby information Mother information Hospital information
Nursery types
Physicians
Audiologists
Screeners
Insurance Providers
Medicaid
Screening Equipment/Protocols
Diagnostics
ABR, OAE, Tympanometry, Behavioral
Audiograms
Hearing Status
Degree and type of loss
Interventions
Amplification
EI Services
School Age services
Support Groups
Communication Log
Form Letters

15. Data Clusters (continued)
Risk Indicators (JCIH)
1994
2000
Results
Diagnostic Recommendations
Hearing Status
Type of Loss
Degree of Loss
Notes
Log Date, Person Entering Note

16. Other issues to consider
Data Definitions
Home Births
Out of State Births (Residents/non residents)
Possible responses for each of the major variables
History of actions (changes)
Dates when changes are made
Merging Information from other sources
Archiving Information
Transferring Information
Duplicate records checking
Unique Identifiers
Data cleaning (addresses etc)

17. Three approaches for collecting data
Dedicated system
Commerical
Customized in house
Metabolic Screening
Electronic Birth Certificates

18. Data Integration Other state data systems and metabolic screening
Ways to share data (use a graphic to describe)
One system (Ownership issues)
Data Dump (Disks—the old fashion way)
Passing information electronically (Security issues)
Data Warehouse
Real time data integration
Robust Design, Coordination, Agreements, Permissions, Security, Rules for who can change what, when; Main a history of changes

19. Other Health Systems Genetics EDHI Private Providers Neometrics
Vital Statistics
Birth Defects
Metabolic Screening
WICK
Early Intervention
Immunizations
Indian Health Services
Military

20. Data Integration Get one link between two databases working at a time
Work out all the precedence rules for missing or conflicting data
Work out rules for cleaning data
Get parents and other partners involved from the beginning
KISS