1. EHDI Content Profile: Screening, Short-Term Care, and Clinical Surveillance for Hearing Loss EHDI Content Profile: Screening, Short-Term Care, and Clinical Surveillance for Hearing Loss John Eichwald, MA FAAA CDC EHDI Team Lead Terese Finitzo, PhD CEO OZ Systems Public Health Data Standards Consortium Anna Orlova, PhD Executive Director Public Health Data Standards Consortium Lori Reed-Fourquet, MS e-HealthSign, LLC Integrating the Healthcare Enterprise ® John Eichwald, MA FAAA CDC EHDI Team Lead Terese Finitzo, PhD CEO OZ Systems Public Health Data Standards Consortium Anna Orlova, PhD Executive Director Public Health Data Standards Consortium Lori Reed-Fourquet, MS e-HealthSign, LLC Integrating the Healthcare Enterprise ®

2. risk analysis Public Health EHDI-IS Medical Home PCP EHR-S Audiology Early Intervention Pass NHR Pass HR Fail / Refer Not Complete Close Diagnosis (pass) (fail) (continuous monitoring) (yes) Hearing Loss Eligibility (no)(yes) (no) Age < 36 months (no) (yes) OP screen Close Appointment Kept? (yes) (24 – 36 months) (no) EHCP EHDI Content Profile - Process Flow Normal Newborn Hearing Screening: Hospital EHR-S HS Device EHCP Appointment Kept? (yes) (no) Pass/Fail

3. risk analysis Audiology Early Intervention Fail / Refer Close Diagnosis (continuous monitoring) (yes) Hearing Loss Eligibility (no)(yes) (no) Age < 36 months (no) (yes) Close Appointment Kept? (yes) (24 – 36 months) (no) Use Case 1 : Birthing Facility Hearing Screening Normal Not Complete Medical Home PCP EHR-S Public Health EHDI-IS Newborn Hearing Screening: Hospital EHR-S HS Device EHCP Pass NHR Pass HR EHCP (pass) (fail) OP screen (yes) Appointment Kept? Pass/Fail (no)

4. Audiology Early Intervention Fail / Refer Close Diagnosis (continuous monitoring) (yes) Hearing Loss Eligibility (no)(yes) (no) (yes) Close Appointment Kept? (yes) (24 – 36 months) (no) Use Case 2: Newborn Hearing Screening: Pass right; Pass left; No risk factors Normal Not Complete Medical Home PCP EHR-S Public Health EHDI-IS Newborn Hearing Screening: Hospital EHR-S HS Device EHCP Pass NHR Pass HR EHCP (pass) (fail) OP screen (yes) Appointment Kept? Pass/Fail (no) Age < 36 months risk analysis

5. Audiology Early Intervention Fail / Refer Not Complete Close Diagnosis (continuous monitoring) (yes) Hearing Loss Eligibility (no)(yes) (no) (yes) Close Appointment Kept? (yes) (24 – 36 months) (no) Use Case 3: Newborn Hearing Screening not complete Normal Medical Home PCP EHR-S Public Health EHDI-IS Newborn Hearing Screening: Hospital EHR-S HS Device EHCP Pass NHR Pass HR EHCP (pass) (fail) OP screen Pass/Fail (yes) Appointment Kept? (no) Age < 36 months risk analysis

6. risk analysis Audiology Early Intervention Fail / Refer Close Diagnosis (continuous monitoring) (yes) Normal Hearing Loss Eligibility (no)(yes) (no) Age < 36 months (no) (yes) Close Appointment Kept? (yes) (24 – 36 months) (no) Use Case 4: Short-term Care Follow-up: Audiologic Diagnosis and Referral to Early Intervention Not Complete Medical Home PCP EHR-S Public Health EHDI-IS Newborn Hearing Screening: Hospital EHR-S HS Device EHCP Pass NHR Pass HR EHCP (pass) (fail) OP screen (yes) Appointment Kept? Pass/Fail (no)

7. risk analysis Fail / Refer Close (continuous monitoring) (yes) (no) Age < 36 months (no) (yes) (24 – 36 months) (no) Use Case 5: Clinical Surveillance Monitoring for Delayed, Progressive or Incident-based Hearing loss Audiology Early Intervention Diagnosis Hearing Loss Eligibility (yes) Close Appointment Kept? (yes) Normal Not Complete Medical Home PCP EHR-S Public Health EHDI-IS Newborn Hearing Screening: Hospital EHR-S HS Device EHCP Pass NHR Pass HR EHCP (pass) (fail) OP screen (yes) Appointment Kept? Pass/Fail (no)

8. EHDI Quality Measurement Indicators Measure: EHDI-1a (Use Case 1) Percent of births that have been screened for hearing loss before hospital discharge Numerator = # newborns screened Denominator = # newborns discharged Rationale: Benchmarks set within the EHCP may trigger hospital or jurisdictional compliance activities, such as rewriting of procedural guidelines or retraining of screening staff

9. EHDI Quality Measurement Indicators Measure: EHDI-1b (Use Case 1) Hearing screening refer rate at hospital discharge Numerator = # newborns fail/refer Denominator = # newborns screened Rationale: Benchmarks set within the EHCP may trigger hospital or jurisdictional compliance activities, such as retraining of screening staff or recalibration of hearing screening devices

10. EHDI Quality Measurement Indicators Measure: EHDI-1c (Use Case 3) Percent of infants not screened at birth who receive outpatient screening no later than one month of age Numerator = # newborns with outpatient screen Denominator = # screening not complete Rationale: Benchmarks set within the EHCP may trigger hospital or jurisdictional compliance activities, such as rewriting of procedural guidelines or retraining of screening staff and healthcare providers

11. EHDI Quality Measurement Indicators Measure: EHDI-2a (Use Case 2 - 5) Percent of infants within a Medical Home who have completed risk factor analysis and information has been transmitted to EHDI-IS Numerator = # analysis and transmitted Denominator = # patients < 12 months of age Rationale: Depending upon jurisdictional benchmarks, Public Health EHDI staff may review EHCP for completion of risk assessment for quality assurance

12. EHDI Quality Measurement Indicators Measure: EHDI-2b (Use Case 2, 4, & 5) Percent of children in a practice with risk factor and have an audiological diagnosis Numerator = # with documented audiological diagnosis (24 - 36 mos.) Denominator = # patients in the practice 24 - 36 months with risk factor Rationale: Public Health EHDI staff may review EHCP for completion audiological diagnosis for quality assurance

13. EHDI Quality Measurement Indicators Measure: EHDI-3 (Use Case 4) Percent of newborns not passing screening who have an audiologic evaluation no later than age 3 months Numerator = # audiological Dx < 91 days Denominator = # newborns fail/refer Rationale: May trigger Public Health EHDI staff compliance activities, such as rewriting of procedural guidelines or educational activities for health care providers

14. EHDI Quality Measurement Indicators Measure: EHDI-4a (Use Case 4) Percent of infants with hearing loss referred to intervention services no later than age 6 months Numerator = # referred to intervention with age < 181 days Denominator = # diagnosis of hearing loss Rationale: May trigger Public Health EHDI staff compliance activities, such as rewriting of procedural guidelines or educational activities for health care providers

15. EHDI Quality Measurement Indicators Measure: EHDI-4b (Use Case 4 & 5) Percent of infants with hearing loss referred to intervention services within 48 hours of Dx Numerator = # referred to intervention < 3 days Denominator = # diagnosis of hearing loss Rationale: May trigger Public Health EHDI staff compliance activities, such as rewriting of procedural guidelines or educational activities for health care providers

19. EHDI SNOMED-CT Codes Type of Hearing Loss: DescriptionSNOMED Permanent Conductive44057004 Sensorineural60700002 Mixed77507001 Auditory Neuropathy Spectrum Disorder 443805006 Transient Hearing Loss123123005

20. EHDI SNOMED-CT Codes Degree of Hearing Loss: DescriptionSNOMED Normal (-10 to 15 dB HL)17621005 Slight (16 to 25 dB HL)255605001 Mild (26 to 40 dB HL)18647004 Moderate (41 to 55 dB HL)6736007 Moderate-Severe (56 to 70 dB HL)371924009 Severe (71 to 90 dB HL)24484000 Profound (91+ dB HL)255611003 Agreed upon by DSHPSHWA March 2010 Implementation January 2011

21. EHDI SNOMED-CT Codes Laterality of Hearing Loss: DescriptionSNOMED Unilateral loss - right ear419465000 Unilateral loss - left ear419161000 Unilateral loss - ear unspecified95819006 Bilateral loss95820000

22. EHDI SNOMED-CT Codes Referral: DescriptionSNOMED Referral to pediatric diagnostic audiology service 306210008 Referral to education service - Early Intervention (Part C/non Part C) 415271004

23. EHDI SNOMED-CT Codes Follow-up: DescriptionSNOMED Infant died397709008 Change of residence status360885002 Patient address unknown184112005 Patient telephone number unknown184118009 Follow-up refused183638004 Procedure refused-uncooperative183946001

24. EHDI SNOMED-CT Codes Follow-up (continued): DescriptionSNOMED Persistent non-attender413319007 Loss to follow-up399307001 Inconclusive419984006 Appointment cancelled by patient185332005 Appointment cancelled by doctor185333000 Did not attend281399006

25. EHDI IHE Integration Profile Timeline: June 1, 2010: EHDI Content Profile will be published for public comment June 1, 2010: EHDI Content Profile will be published for public comment public comment period closes June 30public comment period closes June 30 August 2010: EHDI Content Profile published for trial implementation August 2010: EHDI Content Profile published for trial implementation January 2011: testing at IHE Connectathon January 2011: testing at IHE Connectathon Spring 2011: demonstration at Healthcare Information and Management Systems Society (HIMSS) Interoperability Showcase Spring 2011: demonstration at Healthcare Information and Management Systems Society (HIMSS) Interoperability Showcase

26. Questions? jeichwald@cdc.gov tfinitzo@oz-systems.com aorlova@jhsph.edu lori.fourquet@sbcglobal.net jeichwald@cdc.gov tfinitzo@oz-systems.com aorlova@jhsph.edu lori.fourquet@sbcglobal.net The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention and should not be construed to represent any agency determination or policy.