EARLY HEARING DETECTION AND INTERVENTION VIRTUAL CONFERENCE
MARCH 2-5, 2021

(Virtually the same conference, without elevators, airplane tickets, or hotel room keys)

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3/05/2012 | 3:20 PM - 3:50 PM | Reimagining National Infant Hearing Tracking and Surveillance through Individual Data Reporting – A Pilot Study | Regency Ballroom A | 5

Reimagining National Infant Hearing Tracking and Surveillance through Individual Data Reporting – A Pilot Study

The ability to document and assess progress through accurate data is essential for the delivery of high quality public health services. As part of public health’s commitment to children, Early Hearing Detection and Intervention (EHDI) Programs at the local, state, and federal levels need to be able to collect, analyze, and report data in an efficient and standardized way. Currently, each jurisdictional EHDI program has its own way of collecting, analyzing, and reporting, which has contributed to wide variation in the content and format of data. While the collection of aggregate data by the CDC has enabled generation of estimates about progress towards identifying infants with hearing loss, there are several limitations with this data. These include variations in the data that is reported and an inability to answer specific questions, including what factors are associated with over 40% of infants not receiving follow-up services. To address these limitations, the CDC engaged Indiana, Iowa, and other states in a project to reimagine national newborn hearing surveillance through individualized data reporting. Under this project, the CDC collaborated with the participating states to define and obtain limited data sets on infant hearing loss. These sets exclude direct identifiers but include information about the receipt of services and demographic data available from various public health sources. During this presentation, information about the implementation, benefits, and challenges of this project will be discussed from the perspective of both CDC and the collaborating states. This will include states discussing the methods adopted to improve data quality. In addition, information will be shared about how these efforts can assist programs in enhancing their infrastructure to support and benefit from electronic health records, health information exchanges and other initiatives. These findings should assist EHDI programs in identifying ways to advance the collection, analysis, and reporting of data.

1) Describe the benefits of de-identified, child-centric data over aggregate data in redesigning the national surveillance system for infant hearing loss. 2) Understand the benefits and challenges to states in creating a standardized data set to improve the quality and efficiency of healthcare services for children. 3) Describe implementation strategies for data sharing that protect privacy and ensure secure transmission.

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Presenters/Authors

Eric Cahill (Author), Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, ECahill@cdc.gov;
Eric Cahill, MS has been with the CDC EHDI Team since 2009. As a Health Scientist, Eric provides technical assistance to state EHDI programs and investigates public health related issues for the team. Before coming to CDC, Eric served in the EHDI program for the state of Kentucky. He originally trained as a clinical audiologist and has worked at Temple University Hospital, Temple University Children’s Medical Center and Children’s Hospital Boston.

ASHA DISCLOSURE:

Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.

Tammy O'Hollearn (Co-Presenter,Author), Iowa Department of Public Health, tammy.ohollearn@idph.iowa.gov;
Tammy O'Hollearn has been the EHDI Director for Iowa for the last 15 years. She has worked at the Iowa Department of Public Health since 2001. Ms. O’Hollearn provides administrative oversight, budget management, oversees surveillance of the newborn hearing screening and follow-up data base, as well facilitates the day-to-day management of activities to meet program goals. Ms. O’Hollearn works with many stakeholders in the community that assists Iowa EHDI in meeting program goals and strengthen the system of care for Deaf or hard-of-hearing infants. She directs data design, collection, program analyses and evaluation of the EHDI SOC. She serves on many state and national committees and facilitates the Iowa EHDI Advisory Committee. Tammy received a Link Associates Dorothy Schwartz Award in 1993 and ISHA Outstanding Service Award in 2009 and in 2016, the Iowa EHDI program received the EHDI Website of the Year Award.

ASHA DISCLOSURE:

Financial -
No relevant financial relationship exist.

Nonfinancial -
No relevant nonfinancial relationship exist.

Xidong Deng (Author), Centers for Disease Control and Prevention, XDeng@cdc.gov;
Dr. Xidong Deng is a Health Scientist with the CDC EHDI Team. She holds a PhD. in Computer Science and Engineering from Pennsylvania State University. Dr. Deng’s work with the EHDI team includes helping to develop national EHDI data systems, identifying strategies for integration of EHDI systems with electronic health records and state based systems, evaluation of state based EHDI systems, and the identification of privacy and security solutions for information exchange between state public health registries. Her current interests are in ontology, controlled vocabulary and data standards, EHR and PHR systems, and evaluation of health information systems.