Chapter 2: The EHDI Information System: Data Collection and Reporting

Chapter Objectives:

This chapter will help you to

• Describe options to collect data that populate the EHDI system;
• Identify the data items you need to collect from each entity;
• Understand the reasons for collecting each data item;
• Be comfortable with the protocols used by providers in screening through diagnosis and early intervention activities, to understand how data are collected; and
• Understand the purpose and process of Part C of the IDEA, to determine what data are to be collected for your EHDI-IS.

Planning Comprehensive Data Collection

Planning the data collection needed for an effective newborn hearing screening program requires much thought and extensive coordination with all the key stakeholders. Complete and high quality data are integral to being able to successfully conduct the tracking and surveillance activities that ensure all infants receive recommended services and assess a program’s effectiveness.

Data items to be considered for collection throughout the EHDI process are very comprehensive, spanning the entire period from birth to potential Early Intervention enrollment and outcome. You can find the lists of data items and data definitions of categorical data items in the EHDI IS Functional Standards section of the CDC EHDI website.

From Screening/Rescreening to Diagnosis

In planning your data collection, ideally the minimum standard to be maintained is that of the EHDI IS Functional Standards. There are multiple sources of data and those you reference will relate in part to the information desired (e.g., testing type [ABR vs. OAE], ear-specific results).

Data Sources

Birth and screening data can be collected from a wide variety of sources, including birthing facilities (inpatient/outpatient), NICUs, homebirths, military facilities, and Tribal Health facilities. It should be noted that gathering data on foreign-born babies and out of state births can be a challenge. Common birth data sources are

• Paper forms;
• Hospital screening logs;
• Blood spot card;
• Electronic birth certificates;
• Stand-alone databases in a birthing hospital (e.g. hospital delivery unit);
• Hearing screening devices;
• Electronic forms; and
• Electronic health records (EHR).

Demographic and risk indicator (e.g. neonatal intensive care of more than 5 days) data can be collected from Vital Records and EHRs. This is discussed further in Chapter 3, Updating and Using Your EHDI-IS for Tracking, Surveillance and Program Improvement.

In collecting screening, rescreening, and diagnostic assessment data, a jurisdiction could consider

• What information will be collected;
• The time, cost, and effort required; and
• Who will provide the rescreening/diagnosis results and to whom will the information be provided (e.g., public versus private practice)? Be sure you are in compliance with your jurisdiction’s rules and regulations.

Protocol Considerations for the Collection and Reporting of Screening and Rescreening Data

Establishing protocols that specify how data is to be collected and reported are the best way to ensure all infants receive recommended hearing screening and rescreening services Awareness of the various protocols used within your jurisdiction is important and will guide the type of data the program needs to collect in order to be effective in tracking and surveillance. In some jurisdictions the screening protocol is the same throughout the state or territory while in others the protocol varies by hospital. A uniform screening protocol across the jurisdiction can support greater consistency in the screening reporting form and the data items collected. The following are examples of different screening protocols.

• There are different protocols for conducting hearing screening.
  • Some states screen using only one technology (AABR or OAE, see below), either once or multiple times.
    • Otoacoustic Emission (OAE) hearing screening includes Transiently-Evoked OAE (TEOAE) and Distortion Product OAE (DPOAE)
    • Automated Auditory Brainstem Response (Automated ABR, or AABR)
    • OAEs and AABR screening assess different parts of the auditory system.
  • Some states screen with both technologies.
  • Screening protocols can vary by jurisdiction and by hospital within a jurisdiction
• Various labels can be used to describe the different screening protocols. Examples include:
  • One-stage or two-stage screening protocols
  • Inpatient or outpatient screening protocols
  • Initial hearing screen or rescreen protocols
• Use of consistent terms for the screening protocol(s) can reduce confusion in data reporting and quality assurance outreach.
• For more information on screening technology and protocol options, reference the NCHAM eBook, Chapter 2.^[1]
• The EHDI Functional Standards list screening technology as a Core data item. Therefore EHDI programs should consider collecting these data in addition to the screening result. Capturing the data on the type of screening technology used is also important for quality assurance within your jurisdiction.
• Infants in the NICU require special consideration because of the higher incidence of permanent hearing loss found among NICU graduates. Please reference the 2007 Joint Committee on Infant Hearing (JCIH) position statement^[2] and its supplement^[3] for additional information.
• Hearing screening in non-hospital settings
  It is important to consider other non-hospital settings where hearing screening is done, such as
  • Audiology clinics;
  • Alternative birthing centers;
  • Home;
  • Early Intervention (EI) centers; or
  • Physicians’ offices.

Some of these settings may provide initial hearing screening only, or some may do rescreening only. The protocol that is used in a setting will determine in what manner and how often the data could be reported to the EHDI program, as well as the training needs of facilities.

• Documented follow-up
  Establishing standardized follow-up protocols for infants who have failed the hearing screen, and infants who have risk indicators for late onset hearing loss (as noted by the JCIH 2007 statement)^[4], is critical. Although protocols may vary according to risk indicator, a well-conceived and structured follow-up process that can be documented on the hearing screening report will ease the tracking and surveillance effort.
• Rescreening Data
  • The same considerations apply for the collection of rescreening data, with additional caveats: Who will provide the rescreening results and to whom will the information be provided (e.g., public versus private practice)?
  • In some cases, it is not the birth hospital that is providing the rescreening data; rescreening appointments may occur at “stand alone” audiology clinics. A high level of provider awareness with your jurisdiction’s rules and regulations could aid compliance.
  • Equipping providers with an alternate method for submitting rescreening results to the jurisdictional EHDI program may increase reporting.

    As an example, your state may have an electronic birth certificate which includes hearing screening results that are accessed by the jurisdictional EHDI program. Providers outside of the birth hospital will likely not have access to the EBC and therefore cannot enter rescreening results onto the EBC. Additionally, birth hospitals may not be able to “amend” the EBC once it has been filed during the infant’s initial admission and subsequent discharge.

  • What type of screening technology will be used to rescreen the infant, Otoacoustic Emissions (DPOAE or TEOAE) or Automated ABR (AABR)?
  • The Joint Committee on Infant Hearing’s 2007 Position Statement recommends that both ears be screened regardless of which ear did or did not pass the initial hearing screen.
  • Regardless of the method used to transmit information to the EHDI program, providers performing rescreening could supply, at a minimum, the same information as that gathered during the initial hearing screen.

Consider the following questions when an infant with risk indicators passes the hearing screening.

1. 1. Does an infant with risk indicators who passes the screening require monitoring and, if yes, what should that include? (See the 2007 and most recent JCIH position statements^[5] for guidance.)
   2. Consider consulting an audiologist and/or the EHDI Advisory Board to determine the appropriate course of action.

Reporting Protocols

Voluntary versus mandatory reporting by the provider

It is important for EHDI programs to know if your state or territory has legislation or rules in-place related to the reporting of data about the receipt and results of newborn hearing screening and follow-up services when designing a report protocol. Most U.S. jurisdictions have enacted legislation and/or rules related to the reporting of screening data and follow-up services. In addition, legislation related to birth defects may include requirements for the reporting of any congenital defect without specific exclusion and therefore may apply to cases of hearing loss, when confirmed by diagnostic assessment. If there is no EHDI-specific or birth defects-related legislation that mandates reporting, working with stakeholders on the issue of data reporting is even more important.

Whether or not there is legislative language pertaining to reporting, working with the EHDI Advisory Board and providing periodic training for all screening and diagnostic facilities can improve reporting compliance.^[6]

Things to consider when implementing data reporting components in your system include

1. Type of data reporting
2. Design of the data reporting form;
3. How often the facility should report data to the EHDI program; and
4. Reporting aggregated screening data by facility versus an individual-child screening data. (Note: In order to carry out follow-up, tracking and long term surveillance, requesting the facility to report individual-child data is ideal. It is virtually impossible for an EHDI program to track an infant’s progress from screening to the early intervention stage based on aggregated data.)

Reporting of Diagnostic and Follow-Up Data by Providers

EHDI programs in jurisdictions without a legislatively mandated reporting requirement are in the position of having to request hospitals, audiologists, physicians, intervention providers, and others to voluntarily report data. This process can be time consuming requires ongoing communication because of staff turnover.

Even when a jurisdiction does require all EHDI-related data to be reported, screening, diagnostic, and referral data may not always be reported. This can occur because some providers may be unaware of reporting requirements and/or believe that it is only important to report data on infants with confirmed hearing loss, instead of data for all infants. Staff turnover can also affect data reporting in jurisdictions with reporting requirements as new staff may not be familiar with the requirements.

From Diagnosis to Intervention

The JCIH recommends that all infants with any degree of hearing loss be referred to early intervention (EI). Once an infant is identified with a hearing loss, it is imperative that EI services that meet the needs of the infant and family are provided as soon as possible after diagnosis. For more information on EI systems and services, see the ECTA Center’s Web page^[7] and NCHAM’s Web page on Early Intervention^[8].

After an infant has been diagnosed with a permanent hearing loss, it is also important for the EHDI-IS to be able to capture data about what intervention services are being provided to the infant and their family. Please note that there is no one communication method that is best for every child and CDC does not promote, encourage, or recommend any particular kind of communication option. The objective of EI is to ensure each infant or child has access to language as early as possible, whether it be spoken, visual, or both. Potential interventions can include:

• Audiology;
• Assistive technology;
• Counseling/psychological services;
• Cued language services;
• Family training, counseling and home visits;
• Medical evaluation [for diagnostic purposes only];
• Occupational therapy;
• Physical therapy;
• Service coordination;
• Sign language;
• Social work;
• Special instruction;
• Speech/language; and
• Vision.

Collecting Intervention Data

The procedures established for the reporting of diagnostic hearing results may be able to be used by other providers to report data about the intervention services provided, although the specific data items may differ. Data items for intervention services, such as the following, can be built into the existing reporting platform or format for screening and diagnostic data.

1. Types of intervention(s) recommended;
2. Intervention appointment dates and time;
3. Notation of appointment status: cancelled, no show or other;
4. Types of intervention(s) provided; and
5. When referred to an EI program, to whom and the name of the program.

Building Partnerships with Intervention Providers

EI prior to age 3 years can be organized into two broad categories, Part C and non-Part C. The purpose of The Program for Infants and Toddlers with Disabilities, Part C of The Individuals with Disabilities Education Act (IDEA), is to develop and implement a statewide comprehensive, coordinated, multidisciplinary system of support and services for infants and toddlers with disabilities and their families. The 2011 Part C Regulations specify that a state’s Part C program must include EHDI in the Part C child-find efforts, with a goal of actively identifying and evaluating infants and toddlers who are potentially eligible for EI services. The Early Childhood Technical Assistance Center (ECTA) provides more information on The Program for Infants and Toddlers with Disabilities.

Non-Part C intervention can be broadly defined as enrollment in any developmental intervention service in any clinic or center that is not part of the publicly-funded Part C approved network of providers or centers. Therefore, it may be beneficial for EHDI program staff to investigate whether there are non-Part C EI services in the state and if possible compile a non-Part C EI resource list. To help ensure all deaf and hard of hearing infants are receiving intervention services it can also be helpful to connect with non-Part C EI programs and providers and develop data reporting procedures.

As mentioned, the Part C EI eligibility criteria for infants and children with hearing loss vary by jurisdiction. Depending on the severity of the loss and the jurisdiction, some infants may not be eligible to receive EI services. Depending on the wishes of the parents, some infants may not enroll in Part C EI programs. There may be other EI programs and resources if the infant is not eligible for Part C, or if the parents choose not to participate in Part C.

Regardless of the source, it is beneficial to have a collaborative relationship with intervention programs and providers. This collaboration provides opportunities, through exchange of referrals and outcome data, for coordination among providers, the state EHDI program and early intervention programs.

One aspect of a successful EI program for D/HH infants with hearing loss is collaboration, with EHDI programs, hospitals and physicians, audiologists, Part C and other EI specialists working together with families to document and improve services. Some infants and children may be served in non-Part C private or state funded programs. Establishing relationships with all EI programs and early childhood care providers helps EHDI programs ensure the sharing of EI data. Receipt of EI data in the EHDI-IS will help the EHDI program ensure that all infants with hearing loss are receiving recommended services, and the use of the EI data will help providers to assess the progress of their patients.

Summary

The EHDI-IS’s reason for existence is to make the early identification of deaf and hard of hearing infants efficient, precise and effective, in order to have them connected to services as soon as possible the earlier, the better. A thorough understanding of your jurisdiction’s needs and assets (from sources of data and the protocols used for data collection, to the inclusion of helpful partners) will help you to build a state of the art system to facilitate and expedite the collection and use of the information necessary to that goal. And, once you have it at your disposal, you can move onward to building and maintaining your EHDI-IS so that it serves as valuable tool for the program.