Early Hearing Detection and Intervention - Family of Profiles

Summary

Hearing impairment in children across the world constitutes a particularly serious obstacle to their optimal development and education. Around 0.5 to 5 in every 1000 neonates and infants have congenital or early childhood onset sensorineural deafness or severe-to-profound hearing impairment. Deaf and hearing-impaired children often experience delayed development of speech, language and cognitive skills, which may result in slow learning and difficulty progressing in school. [Newborn and Infant Hearing Screening Report]

Early hearing detection and intervention (EHDI) is a vitally important element in providing appropriate support for deaf and hearing-impaired infants and children that will help them enjoy equal opportunities in society alongside all other children. Many countries have established universal hearing screening and early hearing tracking and surveillance programs to help identify children with hearing loss and provide them with necessary care and intervention services. Challenges in implementing these programs include: quality control, follow-up service provision, and continuum of care.

With the recent development of Electronic Health Record (EHR) systems and expansion of Health IT infrastructure, it is possible to improve the efficiency and quality of EHDI programs through the use of standards based information exchange among different stakeholder systems. EHDI program stakeholders participate in Standards Development Organizations including the IHE Quality, Research and Public Health committees to advance the standards that make it possible to share EHDI related information.

The IHE EHDI standards work began in 2009 with the submission of a White Paper and a Brief Profile Proposal related to newborn screening. This foundational work resulting in the 2010 publication of the Technical Framework Supplement entitled “Early Hearing Detection and Intervention: Screening, Short-Term Care, and Clinical Surveillance for Hearing Loss”. It included an Early Hearing Care Plan for providers of care as jurisdictionally directed by the public health EHDI program, and also addressed reporting on quality measures to assure more effective hearing care. The Early Hearing Care Plan component was tested at three USA IHE Connectathons and demonstrated at the HIMSS Interoperability Showcases in 2011, 2012 and 2013. After publication and testing it became apparent that the complexity of this original work was overwhelming implementers. Through ongoing evolution this earlier work was refactored into separate IHE profiles. These are now referred to as the EHDI Family of Profiles, as explained below:

Benefits

• Ensure that newborn hearing screening results and other relevant clinical information are consistently communicated to care providers directly from the screening system
• Eliminate the need to enter results from screening devices and minimize the errors and shortcomings associated with human data entry
• Provide interoperability between clinical EHR and EHDI systems for increased efficiency and better data quality
• Automate data collection required to support quality improvement
• Reduce the burden of quality reporting on EHR systems
• Better orchestrate the coordination of hearing care across multiple organizations involved in care delivery and public health

Details

• The Early Hearing Detection and Intervention (EHDI) profile that defines a new Hearing Plan of Care document which replaces the original Early Hearing Care Plan. This profile also defines the message content and transaction for a hearing screening device to communicate results to a receiving system.
  • EHDI Recording
  • About the Presenters
    • Lisa R. Nelson, MS, MBA
    • Terese Finitzo, PhD
    • Xidong Deng, PhD

• The Newborn Admission Notification Information (NANI) profile which describes the content needed to communicate a timely newborn admission notification to public health to be used by newborn screening programs.
  • NANI Recording
  • About the Presenters
    • Terese Finitzo, PhD
    • Lisa R. Nelson, MS, MBA

• The Quality Measure Execution-Early Hearing (QME-EH) profile which describes the content needed to communicate patient-level data to electronically monitor the performance of EHDI initiatives for newborns and young children.
  • Embed Recording here (include links for “about the presenters”)

• The Early Hearing Detection and Intervention Workflow Definition (EHDI-WD) profile which specifies a standard workflow to orchestrate the collection and exchange of data between clinical and program specific public health information systems.
  • Embed Recording here (include links for “about the presenters”)