What to know
The EHDI-IS, with the right elements in place, enables ease of tracking and surveillance of infant hearing in the jurisdiction. It allows for collection of complete, high-quality data, critical for timely follow-up efforts. When your system is fully functional and data quality is complete and sound, you can turn your full attention to the use and dissemination of the valuable data – discussed in Chapter 4.

Chapter Objectives
This chapter will help you to
- Understand the role of an EHDI-IS and how it supports an EHDI program;
- Use the EHDI system for tracking and surveillance to document and monitor the hearing status of every baby born in the jurisdiction;
- Use the EHDI-IS to identify gaps in the data collection process; and
- Use the EHDI-IS to support program improvement and policy decisions.
Considering updates to your EHDI-IS for tracking, surveillance and program improvement
When considering the need for updates to your current EHDI-IS, it is important to ask questions on the current state of your EHDI-IS. Does it work as intended? What are its weaknesses? In what ways could it be improved?
In this chapter, you will find some suggestions to consider when updating your EHDI-IS. These suggestions are regarding the functionality and attributes of the EHDI-IS. These pertain to the performance of your surveillance system and how it is accomplishing the aims of your EHDI program.
Things to consider when making enhancements to your EHDI-IS
Assess usefulness to determine how beneficial the system has been in enabling the tracking of infants and young children through the EHDI process. Accessibility is important to consider when determining system usefulness.
- Do you have access to the raw data?
- If not, how easily are you able to access if you need to?
- If not, how easily are you able to access if you need to?
- Can you perform analyses on raw data with minimal effort?
- Can you generate new reports with minimal effort (e.g., without having to submit a request to a vendor or your IT department)?
- Does the IS have the ability to shift from hearing loss tracking to surveillance (explained below)?
- Can your system meet changing needs? Can it
- Add unique data?
- Capture other relevant data?
- Add providers/users to increase accessibility?
- Add unique data?
Consider the system functionality. Does it support tracking efforts and collection of complete, accurate, and timely data? Is it linked to other public health systems to allow for data sharing, which in turn allow for more complete, accurate, and timely data?
- Have you maximized the sharing of electronic health data [SE1] among the involved electronic data systems?
- Have you considered/made allowances for jurisdictional law and other policies with regard to reporting and sharing data (e.g., HIPAA, FERPA)?
Use the CDC EHDI-IS Functional Standards Tool to determine what components, if any, are currently missing from your system and could be added as system enhancements.
Consider your system's flexibility. Can it be updated with ease? Updates should ideally take minimal time, personnel, and resources.
Actively promote your system's acceptability, which can be inferred from the extent of its adoption. This is reflected by the participation rate of reporting sources, completeness of data reporting, and timeliness of reporting.
Consider your system's reliability. Consistently reliable information about the condition under surveillance is an aspect of data quality.
- Is the IS consistently operating?
- What is the frequency of outages?
- What downtime is needed for servicing/updating?
- What is the downtime for users (program staff as well as end-users)?
Determine your system's sustainability.
- Is there adequate funding for what you want your system to be able to do?
- Is the investment of resources for your EHDI-IS commensurate with the relative value of the results/tracking/surveillance it produces?
You would be well advised to consult the multiple tools available to plan and implement your program's sustainability, some of which are referenced in CDC's health equity resource toolkit. [PDF – 3.77MB]
Make use of available CDC tools
EHDI System Self Evaluation Tool (ESSET)
As discussed in Chapter 1, the EHDI Functional Standards provide a framework for determining the operational, programmatic, and technical functional requirements for a complete EHDI-IS.
- Evaluation of your IS is discussed in Chapter 6 and a thorough discussion of public health surveillance, including its evaluation framework, can be found here.2 Although this paper addresses disease outbreaks, it is equally applicable to EHDI programs.
Tracking and surveillance
What is the difference between tracking and surveillance?
- Tracking is often thought of as following a group to document events or outcomes of interest. In the EHDI program, infants are tracked from screening through referral to early intervention. If infants are not tracked accurately, they may be lost to follow-up, or their information may be missing in the program (loss to documentation).
- Surveillance is often defined as the ongoing, systematic collection, analysis, and interpretation of data."1 The EHDI-IS is a mechanism to enable states to capture information on live, occurrent births that should have received a newborn hearing screening and received follow-up services if needed. The data collected in the system can be used to guide the activities of your public health program, describing patterns related to hearing loss, diagnostics, early intervention, and loss to follow-up/loss to documentation-related issues. Results from the data analysis can be used to make improvements in the EHDI-IS, the state data collection procedures, and/or inform state-based policies. Additionally, EHDI surveillance data can be used to monitor progress toward the achievement of national priorities, including the EHDI 1-3-6 benchmarks and the Healthy People objectives.
What is the difference between active and passive surveillance?
- Active surveillance means that the organization/program conducting surveillance initiates procedures to get reports. It occurs when healthcare workers or public health officers proactively collect data on patients or participants from the general public. In general, a search is conducted to find cases.
- Passive surveillance means that the organization/program does not contact potential reporters (healthcare workers, public health officials, etc.), but instead waits for the reports to be submitted to them.
The effectiveness of your EHDI program is dependent on your ability to track the infant population in your jurisdiction. Your EHDI-IS can support your program by serving as the tool that enables you to track all occurrent births in your jurisdiction and promote the infants' receipt of
- Screening before 1 month of age. And if necessary,
- Diagnostic evaluation before 3 months of age.
- Enrollment in early intervention before 6 months of age.
- Diagnostic evaluation before 3 months of age.
For EHDI-IS to be usable to support program improvement and policy decisions, it will be important to capture the information above as described in Chapter 2. Clearly defined data elements will be necessary.
- The Joint Committee on Infant Hearing (JCIH) recognized the need for standardization of definitions and data reporting, and recommended "the development of uniform state registries and national information databases incorporating standardized methodology, reporting and system evaluation"
- By implementing the EHDI Functional Standards and clearly defined data definitions, your system should enable you to track all infants through the EHDI process.
Surveillance
Your EHDI-IS can enable you to conduct surveillance of the newborn population in your jurisdiction.
Surveillance goes beyond mere tracking. It is the active, systematic collection (this is why Chapter 2 is important), analysis, and interpretation of data about selected health conditions, closely integrated with the timely dissemination of results to providers and other stakeholders in the EHDI process.
- In the case of EHDI, the goal is early identification of hearing loss in order to lessen the effects on the newborn.
- Surveillance programs typically use a variety of data sources to provide a complete understanding of a particular disease in the community and insight into its control.
At a minimum, your EHDI-IS ought to be able to capture the individual level data needed to conduct active follow-up on the screening, diagnostic assessment and early intervention enrollment done. In addition to documenting the receipt of services, it can be beneficial for your EHDI-IS to include data regarding early intervention outcomes. The availability of data about outcomes among deaf and hard of hearing (D/HH) infants can make it possible to conduct additional surveillance that can support
- Evidence-based interventions;
- Data-driven policy decisions and/or changes; and
- Assessment of your EHDI program's impact.
- For example, outcomes data can address the question "How are D/HH children identified and enrolled in early intervention performing compared to children without hearing loss?"
A more thorough discussion of data use and dissemination is found in Chapter 4 of this Guidance Manual.
EHDI-IS support of programmatic decision making
Your EHDI-IS can assist with programmatic decision-making (i.e., evaluation and program improvement).
Data-driven programmatic decision-making can help you to know if your EHDI program is serving its intended purpose. But data collection can do more than just support tracking and follow-up of infants in your jurisdiction. It can also support program improvement.
- It can help you formulate and set health priorities;
- It can assist with planning, implementing, monitoring, managing, and evaluating your program (as discussed in Chapter 6).
In order to make good data-driven decisions for your EHDI program, you will need to use the epidemiologic, economic, demographic, and other types of information that you collect from multiple sources, combined with your EHDI-IS data. At its most basic, you will need to measure the "problem" and the result of the intervention (again, see Chapter 6's discussion of Evaluation).
In making data-driven decisions, you will need to
- Define your priorities and focus your data collection and analysis on these priorities. Make sure you understand what you hope to accomplish with your EHDI-IS. How can you best achieve your EHDI 1-3-6 benchmarks?
- Invest effort into obtaining quality data.
- Use the power of integrated databases, such as Vital Records and Part C Early Intervention. For example, integrating with Vital Records will enable a state EHDI program to ensure that all occurrent births are accounted for in the screening at birth hospitals.
- Commit to rigorous data analysis to discover, diagnose, and explain problems. This will enable you to assess the following
- Contributing factors;
- Affected communities; and
- Trends over time (Is the implementation of a solution effective?)
- Contributing factors;
Importantly, consider a plan for disseminating your data findings and conclusions to advisory boards and other stakeholders. They can use your data to help with future planning and priority setting.[ES(7]
The importance of data sharing and reporting
Currently, most state EHDI programs routinely exchange information with hospitals, physicians, and audiologists. However, the collaboration between EHDI programs and early intervention services is not as consistent. An important role of the state EHDI program staff is to work collaboratively with medical professionals, audiology centers, and early intervention providers to establish a mechanism for data exchange.
Effective collaboration between partners can ensure that
- Infants receive recommended services in a timely manner;
- Information management is improved and support is provided to families; and
- Evaluation of the effectiveness of services to children is maximized.
The loss-to-follow-up/loss-to-documentation rates can be greatly improved when providers report relevant data with standardized definitions to the state EHDI program. An established protocol for data exchange is essential to tracking and surveillance, and to determine the developmental outcomes for children who are deaf and hard of hearing.
The EHDI Advisory Committee may be helpful in generating ideas and developing memoranda of understanding or agreement (MOU/MOA), data exchange agreements, universal referrals and forms, and additional documents to facilitate the exchange of data.[ES(8]
Collaborate, collaborate, collaborate
Effective tracking and surveillance activities, to ensure the health and wellbeing of infants in your jurisdiction and to make the best data-driven decisions for program improvement, will often require additional data from other sources in your state. Implementation of electronic health records interoperability standards and technologies may be necessary, and suggests a need to be familiar with health information technology (HIT). These and other considerations are discussed in Chapter 7.
Linking with Other Systems to Collect Additional Data
Some of the data collected on newborns are duplicated because all reports include demographics of the infant and locator information for parents and pediatricians. Most state health departments receive the following information on each newborn.
- Birth certificate
- Pro: Includes information on birth defects, which is important as some birth defects are risk factors for progressive hearing loss.
- Con: Assigned days or even weeks after birth.
- Con: Birth certificate number is not used in the health record in many states.
- Pro: Includes information on birth defects, which is important as some birth defects are risk factors for progressive hearing loss.
- Metabolic (blood spot) screening results
- Pro: Since this number is assigned soon after birth, some state health departments have proposed to use this as a linking number for infant hearing reporting.
- Pro: Since this number is assigned soon after birth, some state health departments have proposed to use this as a linking number for infant hearing reporting.
- Infant hearing screening results.
If the state health department has separate data reporting systems for the three data sources above, then one approach could be to try to link all the systems' records for each child. For example, if the state knows a child's birth certificate number and blood spot card number, then any data associated with either of these identifiers can be linked via a separate system to query and retrieve those disparate data. While there are well-known problems with linking data records (e.g., the names of the child and mother might change, or the date of birth might be missing or incorrect), this dynamic linkage of records could enable an integrated view of the child's medical history and provision of the composite information to healthcare providers.
Unique identifier(s) to link records and track each child
To track children over time efficiently and minimize errors, state health departments need a way to identify each child uniquely.
Some states have created a unique number for each child to facilitate data linkage. A set of labels with a unique number and bar code are printed on a page and the labels are assigned to each infant at birth. One of those labels is placed on each of the data report forms (metabolic screening, infant hearing screening, and birth certificate) for each patient, or the number is entered on an electronic report form. At the state health department, the data from the different report forms for each child are linked together using this unique identifier.
The problem is that most state health departments do not have such a set of identifiers for each child in a single database. A simple way to create such a set of identifiers for record linkage and infant tracking is to include these identifiers as part of the electronic birth certificate reporting. The following identifiers are recommended
- Birth certificate number;
- Blood spot card number;
- Infant's birth hospital and medical record number;
- Mother's medical record number; and
- Newborn hearing screening test report number (if hearing test results are reported to the state health department independent of the electronic birth certificate or blood spot card).
Integration for data systems: master child index and "child profile"
Some states are planning to develop integrated online systems that will enable hospitals and healthcare providers to report and receive information in a uniform way based on the child, rather than the type of service provided. An integrated data system for newborns would include all the information shown on birth certificates, metabolic screening and hearing screening reports, as well as other information on health conditions and prevention services such as birth defects and immunizations. In an integrated system, it would be possible to have an up-to-date summary of health status and services received for each child. Such a summary, or "child profile," is what healthcare providers and case managers need to care for each child.
Of course, such integration has patient privacy implications and is subject to laws governing protected health information. These issues are discussed in great detail in Chapter 5.
There are many advantages of having an integrated online system, including
- For hospitals and healthcare providers:
- Less burden because of less duplication of data reported and a more uniform method of reporting;
- Better healthcare delivery to patients because more accurate and more comprehensive data on each child are reported to the state health department; and
- Potential of automating the reporting process by interfacing with the hospital information system.
- Less burden because of less duplication of data reported and a more uniform method of reporting;
- For the state health department:
- More timely data on each child;
- Less burden on data capture, entry and validation;
- Less chance of duplication or wrong information on a child because of mistaken identity;
- Less burden in finding and locating children and families because different programs can share and update relevant information, and fewer infants and children will be "lost to follow-up"; and
- Better healthcare delivery to infants because important information (such as risk factors) collected by one program can be used by another for case management.
- More timely data on each child;
Child-based integrated reminder system
Another benefit of an “integrated” data system (using an integrated database or dynamic linkage) is that it allows for an integrated reminder system. Instead of receiving numerous reminder messages about different healthcare needs, healthcare professionals and parents could be notified of hearing test, immunization, and other health services that the child needs—all in a single message. [ES(9]
- Thacker SB, Berkelman RL. History of public health surveillance. In: Halperin W, Baker EL (Eds.) Public Health Surveillance. New York: Van Norstrand Reinhold; 1992.
- Health Equity Resource Toolkit for State Practitioners Addressing Obesity Disparities [PDF – 3 MB]
- Buehler JW, Hopkins RS, Overhage JM, Sosin DM, Tong V. (2007). Framework for Evaluating Public Health Surveillance Systems for Early Detection of Outbreaks. MMWR, 53(RR05);1-11 Available at https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5305a1.htm
- Suhana A, Satterfield A, Mason CA. Importance and Progress in the Standardization of the Reporting and Analysis of EHDI Data. J Early Hear Detect Interv. 2016;1(2):2-7. PMCID: PMC5102258
- 2014 CDC EHDI Hearing Screening and Follow-up Survey (HSFS): Explanations [PDF – 524 KB]