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Session 8 EHDI Data Collection & Management in Washington State

Session 8 EHDI Data Collection & Management in Washington State. Washington State Department of Health Richard Masse, MPH Karin Neidt, MPH Caroline Maundu, BS.

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Session 8 EHDI Data Collection & Management in Washington State

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  1. Session 8EHDI Data Collection & Management in Washington State Washington State Department of Health Richard Masse, MPH Karin Neidt, MPH Caroline Maundu, BS

  2. Faculty Disclosure InformationIn 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.

  3. Washington State Profile • Births: 80,0000 • Birthing Hospitals: 69 • Mandate: No Mandate • Model: Follow-up provided by State

  4. 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 Children’s 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/upgrades • Other partners • AAP, WSDS, Lion’s Foundation

  5. 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

  6. 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

  7. DOH VB CLIENT Audiologist Web App 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

  8. Audiologist Web App Hospital Results 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

  9. Basic System Uses • Patient Follow-up • Monitoring Screens • Feedback to stakeholders

  10. PatientFollow-Up • Respond to results submitted by hospitals • Communicate with primary care provider • Use combination of letters, calls & faxes • Document case management

  11. 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

  12. 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

  13. Additional System Uses • Protocol Analysis • Outcome Evaluations • Ad-Hoc Data Analysis

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

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

  16. Ad-Hoc Analysis • Geographically Specific • Specific Diagnostic Clinics • Border Issues

  17. Future System Uses • AUCD Risk Factor Study • Lost to Follow-Up • Data Integration

  18. AUCD Risk Factor Study • UW & Children’s Hospital • Risk factor education • Risk factor reporting • Increase data submitted • Evaluation of data collected

  19. Lost to Follow-Up • Determine causes • Student projects • Develop targeted protocols

  20. Data Integration • Child Profile • Part C • Medical Homes • Local Public Health

  21. What we’ve learned…. • Be familiar with your system • Evaluate your system & protocols • Involve stakeholders • Know your resources

  22. Contact Information Richard Masse, MPH Richard.Masse@doh.wa.gov Karin Neidt, MPH Karin.Neidt@doh.wa.gov Caroline Maundu, BS Caroline.Maundu@doh.wa.gov Washington State EHDI on the web www.doh.wa.gov/ehddi

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