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

2. 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.

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. 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 EHDI SQL DATABASE DOH VB CLIENT Audiologist Web App.ASP pages Secure DOH environment

8. 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 EHDI SQL DATABASE Audiologist Web App DOH Hospital Results

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

10. Patient Follow-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 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