1. Public Health Data Standards Consortium http://www.phdsc.org http://www.phdsc.org

2. Testing Health IT Interoperability Standards for Early Hearing Detection and Intervention (EHDI) Program: Addressing State EHDI Program Needs WORKING WITH HEALTH IT VENDOR COMMUNITY PHDSC-CDC-IHE Collaboration

3. Quality, Research and Public Health Committee Providers, PUBLIC HEALTH and Software Developers Working Together to Deliver Interoperable Health Information Systems in the Enterprise and Across Care Settings Source: Dan Russler, Former Co-Chair, IHE Patient Care Coordination Technical Committee

4. IHE Integration Profiles for HIT Interoperability: Examples Patient Demographics Query Patient Identifier Cross-referencing Map patient identifiers across independent identification domains Cross-Enterprise Document Sharing Registration, distribution and access across health enterprises of clinical documents forming a patient electronic health record Cross-enterprise Document Point-Point Interchange Media-CD/USB & e-mail push Emergency Referrals Format of the Document Content and associated coded vocabulary PHR Extracts/Updates Format of the Document Content and associated coded vocabulary ECG Report Document Format of the Document Content and associated coded vocabulary Lab Results Document Content Format of the Document Content and associated coded vocabulary Scanned Documents Format of the Document Content Imaging Information Format of the Document Content and associated coded vocabulary Medical Summary ( Meds, Allergies, Pbs) Format of the Document Content and associated coded vocabulary Consistent Time Coordinate time across networked systems Audit Trail & Node Authentication Centralized privacy audit trail and node to node authentication to create a secured domain. Basic Patients Privacy Consents Establish Consents & Enable Access Control Document Digital Signature Attesting “true-copy and origin Cancer Content profile Cancer Registry Reporting EHDI Content profile Newborn Hearing Screening and Short-term Care Follow-up Patient ID Mngt Security Clinical and PHR Content Health Data Exchange Public Health Notification of Document Availability Notification of a remote provider/ health enterprise Request Form for Data Capture External form with custom import/export scripting Newborn Screening White Paper Newborn Bloodspot and Hearing Screening Workflow and Dataflow Maternal & Child Health Content profile Pediatric Care Reporting to Public Health Agency

5. EHDI Content Profile

6. Hearing loss identified following newborn hearing screening (NHS) is considered a neuro-developmental emergency. Hearing screening has received widespread acceptance by public health in the United States (US), England, Scotland and Australia. Pilot projects are underway world-wide. Yet nearly 50% of infants needing care following screening may not receive it. Screening results are not consistently communicated to primary care providers (PCP) (pediatricians) by birthing facilities. PCPs do not have ready access to guidance on clinical and diagnostic information to assist care coordination for the infant with suspected hearing loss. Clinical electronic health records (EHR-Ss) and public health early hearing detection and intervention information systems (EHDI-IS) are seldom interoperable and do not share information electronically. EHDI Content Profile at IHE:

7. Describes 5 Use Cases (24-48 hours – 3 years of age): Use Case 1: Newborn Hearing Screening Use Case 2: Normal Newborn Hearing Screening Results; No Risk Factors Use Case 3: Newborn Hearing Screening Not Complete or Referred for Rescreen Use Case 4: Short-Term Care Follow-up: Audiologic Diagnosis and Referral to Early Intervention Use Case 5: Clinical Surveillance Monitoring for Delayed, Progressive or Incident-based Hearing Loss EHDI Content Profile at IHE:

8. Specifies information exchange participants (business actors): A. Healthcare Provider(s)  Birthing Facility nursery staff  Hearing Screener  Birthing Facility risk manager  Primary Care Provider (PCP)  PCP staff  Outpatient Screening staff  Audiologist B. Public Health Staff  EHDI Program staff C. Early Intervention Service Provider  Speech-language pathologist; occupational therapist D. Consumer  Newborn  Parent/Guardian EHDI Content Profile at IHE:

9. Specifies information exchange systems (technical actors): A. Healthcare Provider(s)  Birthing Facility’s EHR-S  Health Information Exchange (HIE)  Hearing Screening Device (HS Device)  Primary Care Provider’s EHR-S  Outpatient Screening EHR-S  Audiologist EHR-S B. Public Health Staff  Public Health EHDI Information System (EHDI-IS) C. Early Intervention Service Provider  Early Intervention Service Provider EHR-S D. Consumer  Personal Health Record System (PHR-S) EHDI Content Profile at IHE:

10. References data sets and data standards to be used for the following data categories:  Notification of Birth (IHE PCC Labor & Delivery Summary, IHE PIX/PAM)  Hearing Screening Results (LOINC, IHE PCD-01) Specifies data sets and data standards to be used for the following data categories:  EHDI Care Plan (EHCP)  EHDI Quality Measures (Patient-Level Quality Measure Report; and Measure Rules) EHDI Content Profile at IHE:

11. 1.1.4 Barcode (Future profile) 0.1.1, 1.1.5 Generate Test Results 1.1.12 Guardian Education 1.1.2 Explain/ Capture Consent 1.1.1 Screening Reminder Birthing Facility EHR-S Birthing Facility EHR-S Primary Care Provider EHR-S Primary Care Provider EHR-S UML Workflow Diagram: EHDI Use Case 1- Initial Hearing Screening 1.1.3 XD* Provide & Register, BPPC, LDR 3.1.1 Notification of Birth, LDR, PAM, PIX 1.1.4. Communicate Newborn Data to Device (PAM) 0.1.2, 1.1.6, 3.1.3 Send Test Results (PCD-01) 2.1.5, 4.1.2 Retrive Medical Knowledge (educational materials and instructions), QRPH_29 1.1.6, 1.1.8, 1.1.9, 1.1.10, 1.1.11, 2.1.1,2.1.2. 2.1.3, 3.1.5, 3.1.7, 3.1.8, 3.1.12, 4.1.1 XD*, DRR Provide & Register, DSUB option for Test Results, Folder, Patient Quality Report, EHCP, XPHR, XDS-MS, Referral; DSUB or NAV for Notification 3.1.4 Generate EHCP Hearing Screening Device HIE EHDI-IS 1.1.3 Enter data to EHR-S Guardian PHR-S Guardian PHR-S 1.1.7 Respond to abnormal results 1.1.7, 2.1.4 Alerts for abnormal results, DSUB or NAV XDS-SD 3.1.9, 3.1.10 Generate Aggregate Reports 1.1.9, 1.1.13 Send/Receive distrubution message, QRPH_30 3.1.2 Establish record for Newborn

12. References Interoperability Specifications (in alphabetical order): EHDI Content Profile at IHE: IHE Content Profiles Options  EHDI Care Plan (EHCP)  EHDI Quality Measure Rule  EHDI Patient-level Quality Measure Report  Exchange of Personal Health Record Content (XPHR)  Cross-Enterprise Sharing of Medical Summaries(XDS-MS)  Labor and Deliver Summary (LDR)  Pediatric Demographics Option (PDO) IHE Integration Profiles  Basic Patient Privacy Consents (BPPC)  Cross-Enterprise Document Sharing (XDS)  Cross-Enterprise Document Reliable Interchange (XDR)  Cross-Enterprise Document Media Interchange (XDM)  Cross-Enterprise Sharing of Scanned Documents (XDS-SD)  Document Metadata Subscription (DSUB)  Document-based Referral Request (DRR)  Document Digital Signature (DSG)  Sharing Value Sets (SVS)  Notification of Document Availability (NAV)  Patient Demographics Query (PDQ)  Patient Identifier Cross Reference Manager (PIX)  Patient Administration message (PAM) IHE Transactions  Communicate Patient Care Device (PCD) Data (PCD-01)  Retrieve Medical Knowledge (QRPH-29)  Send Distribution Message (QRPH-30) Optional Grouping  Patient Centered Coordination Plan (PCCP)  Retrieve Form for Data Capture (RFD)  Retrieve Process for Execution (RPE)

13. Specifies profile actors:  Content Creator  Content Consumer  Knowledge Resource  Knowledge Requestor  Distribution Message Receiver  Distribution Message Transmitter EHDI Content Profile at IHE:

14. Specifies profile transactions:  Share Early Hearing Care Plan (EHCP) content including receive newborn patient demographics, hearing screening results and risk factors for hearing loss; generate EHCP; and send EHCP to HIE or information recipient  Share EHDI quality measures (patient-level) including (1) receive newborn patient demographics, hearing screening results and risk factors for hearing loss, or (2) EHCP, or (3) patient-level quality measure report; compute quality measure; and send it to information recipient  Request medical knowledge (guidelines and educational materials)  Send distribution message (population-based surveillance reports) EHDI Content Profile at IHE:

15. Early Hearing Care Plan (EHCP) Content Person Information Consent Absence Directives Assessment Diagnosis Planning Implementation Reason for Referral Patient Education and Consents Results Notifications, Reminders and Alerts Orders Past Medical History Surgical History Family and Social History Contains information relevant to management of the early screening evaluation and intervention process as defined by the jurisdiction public health authority.

16. EHDI Patient-Level Quality Measure Report Content Measure Set Information Measure Information Reporting Parameter Information Encounter Information Person Information Procedure Information Problem Information Diagnosis Information Contains information relevant to computing EHDI quality measures for the early screening evaluation and intervention

17. Public Health Early Hearing Quality Measures (EHQM) EMeasure Name EMeasure Id Version number Set Id Available Date Effective Date Range Author Verifier Description Measure scoring Measure type Rationale Reference Data Criteria Population Criteria (Initial Population, Numerator, Denominator) Contains the information relevant to monitoring and measurement of the early screening evaluation and intervention process as defined by the jurisdiction public health authority. May be used as RPE Protocol, but may be communicated using e-mail, web, etc. as non-patient specific content.

18. EHDI Profile Content Medical Knowledge Content Contains the information relevant to educational materials related to the early screening evaluation and intervention process as defined by the jurisdiction public health authority. Distribution Message Content Contains the information relevant to aggregate surveillance reports and notifications related to the early screening evaluation and intervention process as defined by the jurisdiction public health authority.

19. EHCP Content and EHDI Quality Measures Report Content may be shared between Content Creators and Content Consumers. A Content Creator or Content Consumer MAY be grouped with appropriate actors from the XDS.b, XDM or XDR profiles and the metadata sent in the document sharing or interchange messages has specific relationships to the content of the clinical document described in the content profile. EHDI Content Profile at IHE:

20. Retrieve Medical Knowledge: The Retrieve Medical Knowledge Transaction specifies the query and receipt of medical knowledge from an authoritative source (e.g. Public Health Authority). This medical knowledge is not patient specific, though the retrieval query for the knowledge may contain patient-specific content. Used to retrieve guidelines and education specific to the patient EHDI Content Profile at IHE:

21. Send Distribution Message Transaction supports the distribution of content from an authoritative source (e.g., Public Health Authority). This may be leveraged for emergency distribution messages and for informative health status for a monitored population (e.g., hearing screening conformance status, comparative quality reports). EHDI Content Profile at IHE:

22. EHDI Demonstration Scenarios EHDI Content Profile at IHE

23. 23 SceneDescriptionContent/ Profiles Birthing Facility – Labor and Delivery The newborn is born.Notification of Birth/PAM, PIX, LDR Birthing Facility – Hearing Screening The newborn is due for hearing screening. Hearing screening is performed. Results are captured by the hearing screening device and sent to the Public Health EHDI Information Systems (EHDI-IS). Variant: The Birthing Facility sends medical summary to HIE. Hearing Screening Results/PCD-01 XPHR/XDS-MS Public Health EHDI IS The EHDI-IS receives hearing screening results indicating that the newborn has normal hearing results. The EHDI-IS generates a Early Hearing Care Plan (EHCP, Care Plan) for normal hearing care. EHDI-IS makes the EHCP available to care providers and caregivers. Variant: The EHDI-IS maintains a knowledge repository of care guidelines and education materials on normal speech and language development. EHCP/XD* Variant: Knowledge Repository/ QRPH-29 EHDI Demonstration Scenarios: Care Plan Use Case 1: Initial Hearing Screening (Normal Results)

24. 24 SceneDescriptionContent/ Profiles Primary Care Provider (PCP, Pediatrician) The Pediatrician retrieves the EHCP with normal hearing screening results on a newborn. The Pediatrician further evaluates the newborn to confirm no risk factors for hearing loss. The pediatrician documents visit in the medical summary. The Pediatrician sends encounter data to HIE. Variant: The Pediatrician submits updated EHCP to EHDI-IS for ongoing care management. Variant: The Pediatrician submits medical summary to EHDI-IS for ongoing care management. Variant: The Pediatrician retrieves care guidelines on routine care for children with normal hearing screening results from public health knowledge repository. EHCP/XD*, DSUB XPHR/XDS-MS Variant – Retrieve Medical Knowledge/ QRPH-29 Personal Health Record (PHR) (Variant) The parents of the newborn with normal hearing establishes a PHR for the newborn, and retrieves education guidelines from public health EHDI-IS on routine care for children with normal hearing screening results along with a copy of the newborn’s EHCP Educational Materials/ Retrieve Medical knowledge, QRPH-29 EHDI Demonstration Scenarios: Care Plan Use Case 1: Initial Hearing Screening (Normal Results) Use Case 2: Normal Newborn Hearing Screening Results; No Risk Factors

25. 25 SceneDescriptionContent/ Profiles Birthing Facility – Labor and Delivery The newborn is born.Notification of Birth/PAM, PIX, LDR Birthing Facility – Hearing Screening The newborn is due for hearing screening. Hearing screening is performed. Results are captured by the hearing screening device and sent to the Public Health EHDI Information Systems (EHDI-IS). Variant: The Birthing Facility sends medical summary to HIE. Hearing Screening Results/PCD-01 XPHR/XDS-MS Public Health EHDI IS The EHDI-IS receives hearing screening results indicating that the newborn has abnormal hearing results. The EHDI-IS generates a Early Hearing Care Plan (EHCP, Care Plan) for care for newborns with abnormal hearing screening results. EHDI-IS makes the EHCP available to care providers and caregivers. Variant: The EHDI-IS maintains a knowledge repository of care guidelines and education materials on abnormal speech and language development. EHCP/XD* Variant: Knowledge Repository/ QRPH-29 EHDI Demonstration Scenarios: Care Plan Use Case 1: Initial Hearing Screening (Abnormal Results)

26. 26 SceneDescriptionContent/ Profiles Primary Care Provider (PCP, Pediatrician) The Pediatrician retrieves the EHCP with abnormal hearing screening results. The Pediatrician further evaluates the newborn to confirm risk factors for hearing loss, if any, and generates the referral for audiology testing. The pediatrician documents visit in the medical summary. The Pediatrician sends encounter data to HIE. Variant: The Pediatrician submits updated EHCP to EHDI-IS for ongoing care management. Variant: The Pediatrician submits medical summary to EHDI-IS for ongoing care management. Variant: The pediatrician retrieved from EHDI IS care guidelines for children with potential hearing loss. EHCP/XD*, DSUB XPHR/XDS-MS Referral/XDS Variant – Retrieve Medical Knowledge/ QRPH-29 Personal Health Record (PHR) (Variant) The parents of the newborn with abnormal hearing screening results establish a PHR for the newborn, and retrieve education guidelines from public health EHDI-IS along with a copy of the EHCP on the care for children with potential hearing loss. Educational Materials/ Retrieve Medical Knowledge, QRPH-29 EHDI Demonstration Scenarios: Care Plan Use Case 1: Initial Hearing Screening (Abnormal Results) Use Case 4: Short-Term Care Follow-up: Audiologic Diagnosis and Referral to Early Intervention

27. 27 SceneDescriptionContent/ Profiles Birthing Facility – Labor and Delivery The newborn is born. Test was performed. Results are sent to EHDI-IS. Variant: Facility sends medical summary to HIE. Variant. Facility sends Quality Measures (QM) Report on number of babies born and screened. Notification of Birth/PAM, PIX, LDR Hearing Screening Results/PCD-01 XPHR/XDS-MS Quality Measures report/CDA Public Health EHDI IS EHDI-IS receives notification of birth, hearing screening results and medical summary; Variant: EHDI-IS computes QM and distributes the QM summary to care providers, caregivers, and public health authorities. Variant: EHDI-IS sends the patient –level QM report to the third party for QM computation Notification of Birth/PAM, PIX, LDR; Hearing Screening Results/PCD-01; XPHR/XDS-MS QM summary.pdf/ QRPH-30 QM Report/QRPH-29 EHDI Demonstration Scenarios: Quality Measures Use Case 1: Initial Hearing Screening (Inpatient)

28. 28 SceneDescriptionContent/ Profiles Continued Quality Measure Processing Entity The Quality Measure Processing Entity receives medical summaries and /or patient-level QM report; computes QM and distributes the QM summary to care providers, caregivers and public health authorities XPHR/XDS-MS QM Report/QRPH-29 QM summary.pdf/ QRPH-30 Birthing Facility – Labor and Delivery The Birthing Facility receives QM Reports reflecting its performance. QM summary.pdf/ QRPH-30 EHDI Demonstration Scenarios: Quality Measures Use Case 1: Initial Hearing Screening (Inpatient)

29. 29 SceneDescriptionContent/ Profiles Primary Care Provider (PCP, Pediatrician) The Pediatrician sends medical summary to HIE. Variant. The Pediatrician sends patient-level QM Report on augiological evaluations. XPHR/XDS-MS Quality measure report/XD* Public Health EHDI IS EHDI-IS receives medical summaries and/or patient-level QM Report on audiological evaluations; computes QM and makes the QM Report available to care providers and caregivers, public health authorities Variant: EHDI-IS sends the patient –level QM Report to the third party for QM computation XPHR/XDS-MS QM Report/ QRPH-30 QM Report/QRPH-29 Quality Measure Processing Entity The Quality Measure Processing Entity receives medical summaries and /or patient-level QM Report on audiological evaluations; computes QM and distributes the QM summary to care providers, caregivers and public health authorities. XPHR/XDS-MS QM Report/QRPH-29 QM summary.pdf/ QRPH-30 Primary Care Provider (PCP, Pediatrician) The Pediatrician receives QM Reports reflecting its performance. QM summary.pdf/ QRPH-30 EHDI Demonstration Scenarios: Quality Measures Use Case 1: Initial Hearing Screening (Ambulatory) Use Case 4: Short-Term Care Follow-up: Audiologic Dx & Referral to Early Intervention

30. Participate in Testing EHDI Content Profile at IHE Connectathon, January 2011 and EHDI Demonstrations at the HIMSS Interoperability Showcase, February 2011 So, EHDI will be Ready for Stage 2 Meaningful Use of Health IT in 2013! For more information about the project, please visit: https://wiki.phdsc.org/index.php/EHDI_Project https://wiki.phdsc.org/index.php/EHDI_Project

31. IHE Connectathon – Testing Interoperability Standards 300+ participants, 120+ systems300+ participants, 120+ systems 60+ systems developers60+ systems developers Four Domains: Cardiology, IT Infrastructure, Patient Care Coordination, Radiology, Public HealthFour Domains: Cardiology, IT Infrastructure, Patient Care Coordination, Radiology, Public Health 2800+ monitored test cases2800+ monitored test cases