Session 8 EHDI Data Collection

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Session 8EHDI Data Collection Management in
Washington State

• Washington State Department of Health
• Richard Masse, MPH
• Karin Neidt, MPH
• Caroline Maundu, BS

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Faculty Disclosure Information In the past 12
months, I have not had a significant financial
interest or other relationship with the
manufacturer(s) of the product(s) or provider(s)
of the service(s) that will be discussed in my
presentation. This presentation will not
include discussion of pharmaceuticals or devices
that have not been approved by the FDA or if you
will be discussing unapproved or off-label uses
of pharmaceuticals or devices.
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Washington State Profile

• Births 80,0000
• Birthing Hospitals 69
• Mandate No Mandate
• Model Follow-up provided by State

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Washington State EHDI Program

• EHDI team staffed by Genetic Services/NBS
  Programs
• 4 FTEs solely for EHDI
• 2 FTEs for program consultation support
• Partners with Childrens Hospital in Seattle
• Help establish and train hospital screening
  programs
• Consult on audiology issues
• Contracts with private vendors
• Support for OAE/ABR equipment maintenance
• Tracking surveillance system maintenance/upgrade
  s
• Other partners
• AAP, WSDS, Lions Foundation

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Washington Staff Profile

• EHDI Team (Genetics/NBS)
• 4 FTEs solely for EHDI
• Follow-up on patients
• Monitor infant screens
• Program outreach evaluation
• 2 FTEs for program consultation support
• Consult on program development
• Data retrieval analysis
• General clerical support

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Tracking Surveillance System History

• 2001 Received CDC/HRSA grants
• 2002 Built system and started with 5 pilot
  hospitals
• 2003 Added a few more hospitals to the system
• 2003 Began work on web application for
  audiologists
• 2004 Audiologists started using web application
• 2004 Began work to add all hospitals in WA to
  system
• 2005 All hospitals but 1 reporting to system
• 2005 Some clinics begin reporting to system

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Tracking Surveillance System Details

• SQL Database
• VB Client used by DOH employees
• Web application is .ASP pages used by
  Audiologists
• Security is both user name/password and digital
  certificates
• EHDI database initially populated by bloodspot
  program data

.ASP pages
EHDI SQL DATABASE
Secure DOH environment
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Overview of how it all works

• Hospitals screen with OAE and ABR
• Hospitals submit results to DOH on modify
  bloodspot cards
• DOH manages screening data and responds
  accordingly
• Referrals are made to audiology clinics
• Audiologists add diagnostic data to patient
  records

DOH
EHDI SQL DATABASE
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Basic System Uses

• Patient Follow-up
• Monitoring Screens
• Feedback to stakeholders

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Patient Follow-Up

• Respond to results submitted by hospitals
• Communicate with primary care provider
• Use combination of letters, calls faxes
• Document case management

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Monitoring Screens

• Use birth rosters to monitor that every infant is
  screened
• Work with hospitals to resolve potential no
  test cases
• Contact primary care provider if infant was true
  no test

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Feedback to Stakeholders

• Hospital Report 1 Screener Reports
• Hospital Report 2 Card Reports
• Audiologist Reports
• Facility/State Statistics
• Referrals with and without recorded visits
• Patient summaries of infants diagnosed with HL
• Risk Factor and Referring MD Summaries
• Ad-Hoc Reports as requested

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Additional System Uses

• Protocol Analysis
• Outcome Evaluations
• Ad-Hoc Data Analysis

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Protocol Analysis

• How many letters do we send?
• What is the response?
• Are the timelines correct?
• Do faxes work better?
• Etc.

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Outcome Evaluations

• Did we detect infants with HL?
• What type of HL?
• Did we lose patients? Why? When?
• Intervention?

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Ad-Hoc Analysis

• Geographically Specific
• Specific Diagnostic Clinics
• Border Issues

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Future System Uses

• AUCD Risk Factor Study
• Lost to Follow-Up
• Data Integration

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AUCD Risk Factor Study

• UW Childrens Hospital
• Risk factor education
• Risk factor reporting
• Increase data submitted
• Evaluation of data collected

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Lost to Follow-Up

• Determine causes
• Student projects
• Develop targeted protocols

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Data Integration

• Child Profile
• Part C
• Medical Homes
• Local Public Health

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What weve learned.

• Be familiar with your system
• Evaluate your system protocols
• Involve stakeholders
• Know your resources

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Contact Information

• Richard Masse, MPH
• Richard.Masse_at_doh.wa.gov
• Karin Neidt, MPH
• Karin.Neidt_at_doh.wa.gov
• Caroline Maundu, BS
• Caroline.Maundu_at_doh.wa.gov
• Washington State EHDI on the web
• www.doh.wa.gov/ehddi