Public Health Data Standards Consortium

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

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

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 & 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

EHDI Content Profile

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:

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:

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:

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:

Specifies data sets and data standards to be used for the following data categories:  Notification of Birth  Hearing Screening Results (LOINC)  EHDI Care Plan (EHCP)  EHDI Quality Measures  EHDI Public Health Surveillance EHDI Content Profile at IHE:

1.1.4 Barcode (Future profile) 0.1.1, Generate Test Results Guardian Education Explain/ Capture Consent 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 XD* Provide & Register [ITI-15,41], BPPC, LDR Notification of Birth, LDR, PIX ITI Communicate Newborn Data to Device {PAM) 0.1.2, 1.1.6, Send Test Results (PCD-01) 2.1.5, Retrive Medical Knowledge ( educational materials and instructions), QRPH_ , 1.1.8, 1.1.9, , , 2.1.1, , 3.1.5, 3.1.7, 3.1.8, , XD*, DRR Provide & Register [ITI-15,41], DSUB option for Test Results, Folder, Patient Quality Report, EHCP, Referral; DSUB or NAV for Notification Generate EHCP Hearing Screening Device HIE EHDI-IS Enter data to EHR-S Guardian PHR-S Guardian PHR-S Respond to abnormal results 1.1.7, Alerts for abnormal results, DSUB or NAV XDS-SD 3.1.9, Generate Aggregate Reports 1.1.9, Send/Receive distrubution message, QRPH_ Establish record for Newborn

Specifies interoperability standards to support information exchange ( in alphabetical order ): EHDI Content Profile at IHE:  Basic Patient Privacy Consents (BPPC)  Communicate Patient Care Device (PCD) Data (PCD-1)  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) Retrieve Process for Execution (RPE)  Document Digital Signature (DSG)  Enhanced Sharing Value Sets (ESVS)  Notification of Document availability (NAV)  Patient Centered Coordination Plan (PCCP)  Patient Demographics Query (PDQ)  Patient Identifier Cross Reference Manager (PIX)  Pediatric Demographics Option (PDO)  Retrieve Form for Data Capture (RFD)  Retrieve Medical Knowledge (QRPH-29)  Send Distribution Message (QRPH-30)

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

Specifies profile transactions:  Share Early Hearing Care Plan (EHCP) content  Share EHDI quality measures (patient-level and population-level)  Request medical knowledge (guidelines and educational materials)  Send distribution message (population-based surveillance reports) EHDI Content Profile at IHE:

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. May use XD*, RFD, DSUB?

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 using HL7 QRDA. May use XD*, RFD, DSUB?

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 using HL7 HQMF (NOTE Not Patient Specific Content). May be used as RPE Protocol, but may be communicated using , web, etc. as non-patient specific content.

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. May use QRPH_29 Distribution Message Content Contains the information relevant to ??????? related to the early screening evaluation and intervention process as defined by the jurisdiction public health authority. May use QRPH_30

Where is Share EHCP and QM diagrams? EHDI Content Profile at IHE:

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:

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:

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:

EHDI Testing Scenarios EHDI Content Profile at IHE

24 SceneDescriptionContent/ Profiles 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) The Birthing facility submits routine EHDI quality metric data to public health EHDI-IS Hearing screening results/ PCD-01; EHDI Quality Report/XDR 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 this Care Plan available through the HIE. Variant: The EHDI-IS maintains a knowledge repository of care guidelines and education materials for hearing screening and follow-up EHCP/XDS Variant: Knowledge Repository EHDI Testing Scenarios: Use Case 1: Initial Hearing Screening (Normal Results)

25 SceneDescriptionContent/ Profiles PCP (Pediatri- cian) The Pediatrician retrieves the Care Plan with normal results. The PCP further evaluates the newborn to confirm no risk factors for hearing loss. The pediatrician submits updated Care Plan to EHDI-IS for ongoing care management Variant: The pediatrician retrieved care guidelines from public health The Pediatrician submits routine EHDI quality metric data to public health EHDI-IS EHCP/XDS (variant: DSUB) Referral/DSUB Variant – Retrieve medical Knowledge EHDI Quality Report/XDR PHR (Variant) The parents of the newborn with normal hearing establish a PHR for the newborn, and retrieves education guidelines from public health EHDI-IS along with a copy of the Care Plan Educational materials/ Retrieve medical knowledge; EHCP/XDS EHDI Testing Scenarios: Use Case 2: Normal Newborn Hearing Screening Results; No Risk Factors

26 SceneDescriptionContent/ Profiles 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) The Birthing Facility submits routine EHDI quality metric data to public health EHDI-IS Hearing screening results/ PCD-01; EHDI Quality Report/XDR Public Health EHDI IS The EHDI-IS receives hearing screening results indicating that the newborn failed screening and generates a Early Hearing Care Plan to direct the newborn to be referred for follow-up for confirmation and diagnosis. EHDI-IS makes this Care Plan available through the HIE. Variant: The EHDI-IS maintains a knowledge repository of care guidelines and education materials for hearing screening and follow-up EHCP/XDS Variant: Knowledge Repository EHDI Testing Scenarios: Use Case 1: Initial Hearing Screening - Abnormal Results

27 SceneDescriptionContent/ Profiles PCP (Pediatri- cian) The Pediatrician retrieves the Care Plan with abnormal results. The PCP further evaluates the newborn to confirm the findings of hearing loss (risk factors???). The Pediatrician refers the newborn to a specialist for diagnosis and intervention. Variant: The pediatrician submits updated Care Plan for ongoing care management. Variant: The pediatrician retrieved care guidelines from public health The Pediatrician submits routine EHDI quality metric data to public health EHDI-IS EHCP/XDS (variant: DSUB) Referral/DSUB Variant – Retrieve medical Knowledge EHDI Quality Report/XDR PHR (Variant) The parents of the newborn with abnormal hearing establish a PHR for the newborn, and retrieves education guidelines from public health EHDI-IS along with a copy of the Care Plan Educational materials/ Retrieve medical knowledge; EHCP/XDS EHDI Testing Scenarios: Use Case 4: Short-Term Care Follow-up; Audiologic Diagnosis & Referral to Early Intervention

28 SceneDescriptionContent/ Profiles PCP (Pediatri- cian) The Pediatrician retrieves the Care Plan with abnormal results. The PCP further evaluates the newborn to confirm the findings of hearing loss. The Pediatrician refers the newborn to a specialist for diagnosis and intervention. Variant: The pediatrician submits to EHDI-IS updated Care Plan for ongoing care management. Variant: The pediatrician retrieved care guidelines from public health The Pediatrician submits routine EHDI quality metric data to public health EHDI-IS EHCP/XDS (variant: DSUB) Referral/DSUB Variant – Retrieve medical Knowledge EHDI Quality Report, XDR Public Health EHDI-IS Quality variant: Public Health (EHDI-IS?) routinely monitors compliance with hearing screening guidelines and regulation. Patient-level quality data is retrieved and assessed according to electronic measure specifications. Reports are generated and distributed to providers. Variant: Value Sets supporting the care plan and the quality measures are retrieved from a value set repository maintained by CDC – why only in this scenario???? EHDI Quality Report, EHDI Quality Measures/XDR, QRPH_30 Send Distribution Variant: Value Set Consumer EHDI Testing Scenarios: Use Case 4: Short-Term Care Follow-up; Audiologic Diagnosis & Referral to Early Intervention

29 SceneDescriptionProfiles/ Constructs PCPMother is seen by OB/GYN for care during PregnancyAntepartum Record, XDS, Hospital of Birth Mother delivers child. Labor and Delivery Report is generated and used to pre-populate the Birth Certificate Request. LDR, RFD Public Health (VR) The Birth Certificate is Received by Public Health Vital Records. Form Manager is reviewed including interface with CDC hosted Value Sets supporting the pre-population. Data is sent routinely to CDC over the NHIN RFD, ESVS, LDR, NHIN Connect CDCCDC receives routine birth certificate information from all states. Statistic for US Births are conducted to monitor the health status of the population. NHIN Connect MCH Testing Scenarios:

Participate in Testing EHDI Content Profile at IHE Connectathon, January 2011 So, EHDI will be Ready for Stage 2 Meaningful Use of Health IT in 2013! For more information about the project, please visit:

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 monitored test cases2800+ monitored test cases

Additional Questions for the team below

EHDI Use Case Description -1 This Use Case represents the newborn hearing screening process flows conducted at a birthing facility as part of a state-based Public Health Early Hearing Detection and Intervention (EHDI) program. Birthing facility populates state EHDI Information System (EHDI-IS) electronically with demographic information on all births to create individual Hearing Record so care can be delivered and for an accurate denominator to use in quality measures.

EHDI Use Case Description -2 Hearing screening results from Screening Devices (or Birthing Facility EHR) are transmitted electronically to State EHDI –IS which matches them to newborn’s record. EHDI-IS generates Early Hearing Care Plan (EHCP) on all infants based on State EHDI program guidelines EHCP communicates screening outcomes and next care guidelines for each infant through Health Information Exchange (HIE) to authorized providers EHDI-IS publishes periodic quality assessment reports for birthing facilities to review as needed to HIE or approved EHRs.

EHDI Content Profile: Next Steps Working with IHE  Develop testing tools and methods for conformance testing of the EHDI Profile at IHE Connecthaton in January 2011 Working with ISO (International Standards Organization)  Develop compliance standards for EHDI Profile by working with ISO Privacy and Security Work Group Working with HL7 EHR Workgroup  Develop certification criteria for electronic EHDI information exchanges So, EHDI will be Ready for Stage 2 Meaningful Use of Health IT in 2013! Promote interoperability of clinical and public health information systems