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Abstract

Objective: To assess the feasibility, benefits, and challenges surrounding individual-level versus aggregate data reporting by jurisdictional EHDI programs to the Centers for Disease Control and Prevention (CDC).

Methods: Using data reported to CDC by three jurisdictions in 2011, descriptive statistics were used to assess the feasibility of collecting and reporting individual-level data. Comparisons were made on what can be learned from individual-level data as opposed to CDC’s aggregate survey data.

Results: Individual-level data provided a detailed overview of the population served, services received, and variations across jurisdictions in data collection, reporting, and quality monitoring practices. Several challenges and areas needing improvement were identified: variations in (1) data standardization; (2) data collection and reporting procedures; and (3) protocols for recommended follow-up services.

Conclusions: Using individual-level data, CDC was able to perform in-depth statistical analyses and learn more about each jurisdiction’s population, their EHDI process, and challenges to data collection, tracking, and surveillance efforts. As a result, CDC was able to provide more targeted technical assistance. All of the above would not be feasible using aggregate survey data. The pilot study demonstrated that individual-level data reporting to CDC is feasible and offers many opportunities for both CDC and jurisdictional EHDI programs.

Keywords: Early hearing detection and intervention, newborn hearing screen, surveillance and tracking

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