1. John Eichwald, Team Lead Early Hearing Detection and Intervention (EHDI) National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention (CDC) Public Health Data Standards Consortium 2012 Annual Business Meeting November 9, 2012 Hyattsville MD EHDI CDA Pilot Project

2. Newborn Hearing Screening U.S. Preventive Services Task Force (USPSTF) recommends screening for hearing loss in all newborn infants (Grade B - July 2008) Hearing loss is one of the core newborn conditions on the Recommended Uniform Screening Panel (RUSP) of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC)

3. Conditions Screened in the Newborn About 12,500 infants are diagnosed with the core conditions each year with the current RUSP Estimated annual numbers (the most common) –Hearing Loss: 5,064 –Primary Congenital Hypothyroidism: 2,156 –Sickle Cell Disease: 1,775 –Cystic Fibrosis: 1,248 –MCADD : 239 CDC Grand Rounds - Newborn Screening and Improved Outcomes Morbidity and Mortality Weekly Report (MMWR) June 1, 2012

4. “1 – 3 – 6” EHDI Foundation Healthy People 2020 Hearing and Other Sensory or Communication Disorders1 Screen no later than 1 month 3 Diagnose no later than 3 months 6 Intervene no later than 6 months

5. Two types of screening technologies Otoacoustic Emissions (OAE) Auditory Brainstem Response (ABR) Screening Photographs courtesy of the National Center for Hearing Assessment and Management (NCHAM)

6. EHDI Clinical Quality Measure CMS Electronic Health Record (EHR) Incentive Program: Stage 2 Final Rule published August 23, 2012

7. HL7 Messaging Screening Results OBR|17|128993^ST ELSEWHERE HOSPITAL^9999999999^NPI|999555^TNSPHLAB^77D7777777^CLIA |54111-0 ^Newborn hearing loss panel^LN|||201010141853|||^VH||||201010151121||1111111111^Smiles^ Minnie^^^Dr^^^NPI&2.16.840.1.113883.4.6&ISO^L^^^NPI^^^^^^^^MD|||||| 201010160918|||F OBX|1|TX|57700-7^Hearing loss newborn screening comment/discussion^LN||Any baby with clinical features suggestive of hearing loss requires clinical and diagnostic follow-up regardless of whether the NMS result is normal or abnormal.|||N|||F OBX|2|CE|54109-4^Newborn hearing screen – right ^LN||LA103921^Pass^LN|||N|||F OBX|3|CE|54108-6^Newborn hearing screen – left ^LN||LA103921^Pass^LN|||N|||F OBX|4|CE|54106-0^Newborn hearing screen method ^LN||LA10388-9^Auditory brain stem response^LN|||N|||F Implementation Guide for Laboratory Results, U.S. Realm, HL7 Version 2.5.1

8. EHDI CDA Pilot Project

9. The HIT Standards Federal Advisory Committee has recommended the use of the HL7 CDA standard as a future direction for electronic data exchanges between clinical and public health information systems for public health reporting The Public Health Data Standards Consortium (PHDSC) is demonstrating electronic data exchange between clinical EHR Systems and public health EHDI using the HL7 Clinical Document Architecture (CDA) standard

10. EHDI CDA Pilot Project Goal: demonstrate the ability to receive a CDA-based EHDI Report by a Public Health Information System in two jurisdictions will focus on reporting of: Newborn hearing screening results and basic patient demographics from the birthing facility’s EHR to the State EHDI Program or Early Hearing Care Plan (EHCP) - based on jurisdictional plans

11. Health Information Exchange (HIE) Or Public Health Gateway Health Information Exchange (HIE) Or Public Health Gateway Birthing Facility EHR Birthing Facility EHR Screening Results Document State EHDI Information System State EHDI Information System CDA-based Actor Diagram CDA EHDI Pilot Project Design Proposed Public Health Reporting Schema: Screening Report Screening Results Document

12. Health Information Exchange (HIE) Or Public Health Gateway Health Information Exchange (HIE) Or Public Health Gateway State EHDI Information System State EHDI Information System Early Hearing Care Plan Primary Care Provider EHR CDA-based Actor Diagram CDA EHDI Pilot Project Design Proposed Public Health Reporting Schema: Care Plan Early Hearing Care Plan

13. TEAM 2 States Participants: (to be determined) Maryland, Massachusetts, Michigan, North Dakota, Oregon, Rhode Island States Observers Florida, Missouri, Ohio, Pennsylvania, South Carolina, Texas, Washington PHDSC Team: Alla Fridman, Anna Orlova, Lisa Nelson, Lori Fourquet, Maiko Minami, Sarah Quaynor CDA EHDI Pilot Project: Team

14. Aug - Sept– Recruitment 2 State participants (To be determined) X State observers November 2012 – Pilot Design December 2012 – Implementation January 10, 2012 – Testing February, 2013 – Draft Project Report May 2013 – Final Project Report CDA EHDI Pilot Project: Timeframe

15. CDA EHDI Pilot Project information PHDSC Project Wiki pages at: https://wiki.phdsc.org/index.php/EHDI The findings and conclusions in this presentation are those of the author and do not necessarily represent the official position or policy of the Centers for Disease Control and Prevention.