PH+Reporting+User+Story+-+Newborn+Hearing+Screening

include component="page" wikiName="siframework" page="PHRI Header" =User Story: Newborn Hearing Screening=

Contact Info:
John Eichwald (jeichwald@cdc.gov) -- Team Lead, Early Hearing Detection and Intervention (EHDI), National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC)

Date Received:
11/17/2011 (Revised: 11/22/2011)

Newborn screening is the process of identifying infants with rare but serious treatable congenital conditions within a few days of birth and before they become symptomatic. With early detection, timely intervention is possible that can mean the difference between life and death, living with the consequences of a disability, and positively affecting the lives of children and their families. While a newborn with certain metabolic abnormalities can be a medical emergency, a newborn with hearing loss can be considered a developmental emergency. With more than 12,000 babies born each year, congenital hearing loss is one of the most common birth defects in the U.S. Children with hearing loss who are not identified early and receive appropriate early intervention can have delayed communication skills, increased behavioral problems, decreased psychosocial well-being, and lower educational achievement. The U.S. Preventive Services Task Force (USPSTF) recommends screening for congenital hearing loss in all newborn infants because there is good evidence that screening is highly accurate and leads to earlier identification and treatment of infants with hearing loss. According to data submitted to the Centers for Disease Control and Prevention (CDC) more than 95% of over the 4 million infants born each year in the U.S. year are screened for hearing loss. The national goals for Early Hearing Detection and Intervention (EHDI) programs are 1) all infants should be screened no later than 1 month of age 2) all infants who do not pass the hearing screening should have a diagnostic audiological (hearing) evaluation no later than 3 months of age and 3) all infants with hearing loss should receive early intervention services no later than 6 months of age (medical, audiological, educational and coordinated healthcare services).
 * Background and Goals**

While hospital-based newborn hearing screening has been so successful, public health authorities cannot document a confirmatory diagnosis for nearly 50% of infants who failed their hearing screening. Screening results are not consistently communicated to primary care providers by hospitals. Diagnostic results are not consistently communicated to public health. Primary care providers do not have ready access to guidance on clinical and diagnostic information to assist healthcare coordination for the infant with suspected hearing loss in their practice. Far too often infants with suspected hearing loss remain at risk for the cognitive and language delays and social and emotional isolation that can occur in the child with late-diagnosed hearing loss.

Newborn screening (both for hearing and bloodspot) is one of the first interactions between clinical care and public health that involves information exchanges. To ensure the delivery of necessary and timely services, information needs to flow among birthing facilities, various healthcare providers, and the public health community. Without an electronic exchange, newborn data typically relies upon busy hospital or laboratory staff entering data, often multiple times, and reporting the same information to multiple entities.
 * Data Reporting Events, Actors and Triggers**

Newborn screening can create an electronic information exchange among hospitals, providers and public health establishing one of the first meaningful interoperability opportunities in an individual’s lifetime and providing an opportunity to lay the foundation for a public health role in Electronic Health Record (EHR) clinical information exchanges. Working towards bidirectional electronic information exchange between interoperable systems improves the ability of public health EHDI programs to ensure that all newborns in their jurisdiction receive timely and appropriate services.

Electronic health information exchanges in the EHDI domain have already been tested through Integrating the Healthcare Enterprise® (IHE) 2011 Connectathon published interoperability profiles and demonstrated at both the 2011 Healthcare Information and Management Systems Society (HIMSS) and the 2011 Public Heath Informatics Conference Interoperability Showcases. This proof of concept has included the transmission of patient level newborn and maternal demographics, as well as hearing screening results, from hospital EHR systems to the jurisdictional public health authority. Although this demographic data was only a subset of the information often obtained by public health through less automated means, it illustrated how maternal and newborn information data entered once in a clinical setting can be used to pre-populate and transmit information for multiple uses in other public health programs, such as vital records, immunizations (HepB) and newborn bloodspot screening.

Clinical decision support through the transmission of best clinical practice guidelines from the Public Health EHDI program to ambulatory clinical EHR systems was included in the IHE Connectathon testing and HIMSS demonstration. Additionally, IHE and HIMSS provided the platform that demonstrated how population level electronic health measures (eMeasures), specifically developed for EHDI and endorsed this summer by the National Quality Forum (NQF), could be captured, processed and displayed. These eMeasure benchmarks may be used to trigger hospital or jurisdictional public health compliance activities, such as re-writing of procedural guidelines or re-training of screening staff.

The following is the flow of events that trigger initial public health reporting: __//Inpatient EHR – Initial Hearing Screening Report//__ 1. Newborn is born 2. Attending physician orders newborn hearing screening (standing order) 3. Hearing screening performed on newborn and the screening results are transferred electronically to Birthing Facility EHR-S and/or the Public Health (PH) EHDI Information System directly or Via Health Information Exchange (HIE). 4. Birthing Facility EHR-S sends basic demographics and screening results data to PH EHDI program directly or via Health Information Exchange (HIE) 5. Birthing Facility EHR-S sends basic demographics and screening results data to PH EHDI program directly or via Health Information Exchange (HIE) //__Inpatient EHR – Initial Hearing Screening Quality Measure Report__// 6. Birthing Facility EHR-S extracts eMeasure Quality Assessment and evaluates its own performance related to the PH jurisdictional guidelines. //__Outpatient EHR – Initial Hearing Screening Follow-up Report__// 7. Primary Care Provider (PCP) EHR is updated with hearing screening results obtained via Birthing Facility EHR-S, PH agency program or HIE 8. PCP reviews screening results, refers for or reports confirmatory diagnosis and updates the PCP-EHR. 9. PCP-EHR submits updated report to PH agency program directly or through HIE

National standard newborn screening codes were developed in collaboration with the Office of the National Coordinator for Health Information Technology (ONC) through context published in the 2008 American Health Information Community (AHIC) Newborn Screening Detailed Use Case. The selection process of these harmonized standards was conducted by the Healthcare Information Technology Standards Panel (HITSP) Population Perspective Technical Committee. In 2010 HITSP released the Newborn Screening Interoperability Specification (IS 92) for implementation which describes the information flows, issues, and system capabilities supporting newborn screening reporting and information exchanges among clinical care settings and public health.
 * Data**

The creation of standardized LOINC® codes for newborn screening and their acceptance by the U.S. Health and Human Services (HHS) Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) provides a technical framework for interoperability among hospital and clinical practice EHRs, device manufacturers, public health laboratories and public health EHDI information systems. The U.S. National Library of Medicine (NLM) published the Newborn Screening Coding and Terminology guide to promote and facilitate the use of standard LOINC and Systematized Nomenclature of Medicine — Clinical Terms (SNOMED CT®) codes as well as draft guidance for incorporating these codes in the creation of HL7 messages. The United States Health Information Knowledgebase (USHIK) metadata registry of healthcare-related data standards, hosted by the Agency for Healthcare Research and Quality (AHRQ), includes this Newborn Screening Order Value Set (HITSP.86785.v1). Additionally the CDC PHIN Vocabulary Access and Distribution System (VADS) provides web-based access to these value sets as well as those associated with IHE EHDI Profile, including the transmission of Joint Committee of Infant Hearing (JCIH) risk indicators for use in clinical surveillance of children at risk for delayed onset or progressive hearing loss within the Medical Home.

A partial list of EHDI data sets based on nationally accepted standards is included as Appendix A.

Additional references: @http://healthit.hhs.gov/portal/server.pt/gateway/PTARGS_0_10731_848123_0_0_18/NBSDetailedUseCase.pdf @http://www.hitsp.org/ConstructSet_Details.aspx?&PrefixAlpha=1&PrefixNumeric=92 http://newbornscreeningcodes.nlm.nih.gov @http://ushik.ahrq.gov/ViewItemDetails?system=mdr&itemKey=86784000 @https://phinvads.cdc.gov/vads/ViewView.action?id=ED2906B5-2906-E011-9273-00188B39829B

As part of its final rule for the EHR Incentive Program, the Centers for Medicare & Medicaid Services (CMS) reported “newborn screening, both as a clinical quality measure, and from a data standards perspective, is a prime candidate for inclusion in the Stage 2 definition of meaningful use.” Through new Integration Profiles, Integration Statements, and Technical Framework documents, the Quality, Research and Public Health (QRPH) Planning and Technical IHE Committees continue to address the infrastructure and content necessary in standardizing the approach to electronic public health reporting between EHR systems and public health EHDI information systems. This includes future testing at the 2012 IHE Connectathon and demonstration at the 2012 HIMSS Interoperability Showcase. In collaboration with the CDC, the Public Health Data Standards Consortium (PHDSC) is working to develop testing methods and tools for HIT products supporting electronic health information exchanges in the EHDI domain.
 * Other information**

There is a high level of stakeholder readiness and commitment to participate in this initiative. Primarily through the outreach efforts of the CDC and PHDSC, over the last several years the EHDI community has been updated and sought out for public comment and input. This includes activities associated with AHIC, HITSP, NLM, IHE, and NQF. The members of the JCIH (representing American Academy of Pediatrics, American Academy of Audiology, American Academy of Otolaryngology-Head and Neck Surgery, American Speech-Language-Hearing Association, Council of Education of the Deaf, and the Directors of Speech and Hearing Programs in State Health and Welfare Agencies) have been supportive of the efforts to harmonize EHDI national data standards, promote interoperability implementation, and support the development and endorsement of EHDI NQF eMeasures. Several clinical EHR and EHDI information system vendors and developers have been involved or expressed significant interest in the opportunity to implement newborn hearing screening in public health/clinical reporting and information exchanges. In July of 2011 the CDC awarded Federal funds to 46 state and 6 territorial EHDI programs which included the opportunity for those programs with fully developed information systems to enhance electronic data exchange with clinical EHR systems over the next five years. The specific focus of this activity is to reduce duplicate data entry burden and to ensure that all newborns in their jurisdiction receive timely and appropriate recommended follow-up services.
 * Stakeholder Commitment**

John Eichwald, Team Lead Early Hearing Detection and Intervention (EHDI) National Center on Birth Defects and Developmental Disabilities (NCBDDD) Centers for Disease Control and Prevention (CDC) jeichwald@cdc.gov
 * Contact Information**

Supporting Files:

 * **Description** || **File** ||
 * This document contains the initial draft user story submission. || [[file:Initial Draft Submission - Newborn Hearing Screening User Story - November 17 2011.docx]] ||
 * This document contains Appendix A for the Newborn Hearing Screening User Story; this appendix describes a partial list of EHDI data sets based on nationally accepted standards. || [[file:Appendix A - Newborn Hearing Screening User Story - EHDI Data Sets.docx]] ||
 * Revised Submission Document. || [[file:Revised Submission - Newborn Hearing Screening - November 22 2011.docx]] ||

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