2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
3/05/2019 | 10:15 AM - 10:40 AM | Restructuring National EHDI Surveillance through Patient-level Data Reporting | International F
Restructuring National EHDI Surveillance through Patient-level Data Reporting
CDC has been supporting jurisdictional programs by providing funding and technical assistance to facilitate the collection of newborn hearing screening, diagnosis, and early intervention information since 2000. State EHDI programs report this information to CDC in aggregate format using the Hearing Screening and Follow-up Survey (HSFS). Although the HSFS can help monitor and assess program progress nationally, it does not allow for in-depth data quality checks and analysis, and can lead to incorrect inferences about the population because it lacks patient-level details. Many key questions, such as what is the national average age of hearing loss diagnosis, remain unanswered.
Realizing the limitations of the HSFS, CDC implemented a pilot study in 2012 to explore the feasibility, benefits, and challenges surrounding restructuring national EHDI surveillance through patient-level data reporting. Three states participated in the pilot and reported limited datasets of patient-level information to CDC. Results showed that reporting patient-level information is feasible and can enhance state and national level EHDI surveillance and thus benefit the children and families these programs serve.
Following the success of the pilot, in 2017 CDC awarded 10 states with additional funding to implement the patient-level reporting model. CDC worked with awardees to develop a list of data elements that states should report to CDC and establish data use agreements that specified data storage and use requirements. The data elements, data use agreements, and reporting process will be described in this presentation. CDC received the first dataset from each awardee in 07/2018, and expects to receive the second dataset by 10/2018. CDC will work with the awardees to conduct detailed quality checks and analyses, which will not only help jurisdictions improve the usefulness of data in ensuring infants receive recommended services, but also increase CDC’s understanding of their EHDI processes in order to provide more targeted technical assistance.
- Understand the limitations of EHDI surveillance based on aggregate data and the need for patient-level data reporting
- Describe the process of reporting patient-level EHDI data from state programs to CDC
- Describe a list of patient-level data elements that states report to CDC and how CDC uses it to enhance national EHDI surveillance
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Presenters/Authors
Xidong Deng
(Primary Presenter), 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.
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Suhana Ema
(Author), CENTERS FOR DISEASE CONTROL AND PREVENTION, vns0@cdc.gov;
Suhana Ema serves as an epidemiologist with the CDC EHDI Team. She is responsible for analyzing EHDI data and disseminating findings with jurisdictional EHDI programs and partners. She also provides technical assistance to jurisdictional EHDI programs to improve their program and tracking and surveillance work. She holds Master of Public Health degree from the University of Georgia. Suhana was born with severe to profound hearing loss on both ears and wears hearing aids. She is fluent in American Sign Language and lipreads well.
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No relevant financial relationship exists.
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Ashley Satterfield-Nash
(Author), CDC, asatterfield@cdc.gov;
Dr. Ashley Nash, DrPH is a research associate on the Early Hearing Detection and Intervention Team in the Division of Human Development and Disability at the Centers for Disease Control and Prevention (CDC). Her work focus on project management and development activities.
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