EHDI Guidance Manual – 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 partners. 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, conduct quality improvement, 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.

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).

Screening protocol considerations for the collection and reporting of screening and rescreening data

Establishing written 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. In some jurisdictions, the screening protocol is the same throughout 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.

Various labels can be used to describe the different screening protocols. Use of consistent terms for the screening protocol(s) can reduce confusion in data reporting and quality assurance outreach.

• One-stage or two-stage screening protocols
• Inpatient or outpatient screening protocols
• Initial hearing screen or rescreen protocols

Screening protocols may include using only one or both technologies.

• 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. For more information on screening technology and protocol options, reference the NCHAM website.¹

Data sources

Demographic, birth, 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.

Initial Screening

Initial screening data can be collected from a wide variety of facilities, including birthing facilities, midwifery practices, military facilities, and Tribal Health facilities. Screening data can be collected and shared by the facility through several mechanisms including:

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

Rescreening

The same considerations apply for the collection of rescreening data, with additional caveats: Who will provide the rescreening results and to whom and how will the information be provided (e.g., public versus private practice)? Establishing standardized follow-up protocols for infants who have failed the hearing screen is critical. Settings outside birthing facilities (e.g., pediatrician, audiologist) may provide rescreens as well as some birthing facilities. Understanding the landscape of providers and facilities that conduct rescreens is foundational in order to promote reporting rescreening results to the EHDI program.

Infants who pass with risk factors

Although protocols may vary according to risk indicator, a well-conceived and structured follow-up process that can be documented within the EHDI-IS will ease the tracking and surveillance effort.

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

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 statements1 for guidance.)
2. Consider consulting an audiologist and/or the EHDI Advisory Board to determine the appropriate course of action.

Reporting protocols for rescreening and diagnostic data

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. Most jurisdictions in the United States 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 infants who are D/HH, when confirmed by diagnostic assessment.

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.2EHDI 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 and 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 who are confirmed D/HH, 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.

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

1. Type of data to be reported and what information is required versus optional;
2. Design of the data reporting form or level of EHDI-IS access if reporting directly into the EHDI-IS;
3. How often and when (e.g., within 48 hours of evaluation) the facility should report data to the EHDI program; and
4. Reporting aggregated screening data by facility versus an individual-child screening data. 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.

From diagnosis to intervention

The JCIH recommends that all infants who are D/HH, regardless of hearing thresholds, be referred to EI and enroll in EI. Once an infant is identified as D/HH, it is imperative that EI services that meet the needs of the infant and family are provided as soon as possible after diagnosis. 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. For more information on EI systems and services, see the ECTA Center's Web page 3 and NCHAM's Web page on Early Intervention.4

Capturing EI data in the EHDI-IS about referral, enrollment and what intervention services are being provided to the infant and their family is also important. Key data elements for EI to consider storing in the EHDI-IS are located in the EHDI-IS Functional Standards. 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;
• Deaf mentor;
• Family training, counseling and home visits;
• Family to family support;
• Occupational therapy;
• Physical therapy;
• Service coordination;
• Sign language;
• Social work;
• Special instruction; and
• Speech/language.

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.

1. Referral date to EI program and name of program;
2. Enrollment start date;
3. Types of intervention(s) provided; and
4. Exit date from program and reason.

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 infants who are D/HH 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, Part C EI eligibility criteria vary by jurisdiction. Depending on the severity of hearing thresholds and laterality, some infants may not be eligible to receive EI services in some jurisdictions. 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 infants who are D/HH 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 who are D/HH are receiving recommended services, and the use of the EI data will help providers to assess the progress of their patients.