Perspective on the Development of a Large-Scale Clinical Data Repository for Pediatric Hearing Research

Abstract

The use of "big data" for pediatric hearing research requires new approaches to both data collection and research methods. The widespread deployment of electronic health record systems creates new opportunities and corresponding challenges in the secondary use of large volumes of audiological and medical data. Opportunities include cost-effective hypothesis generation, rapid cohort expansion for rare conditions, and observational studies based on sample sizes in the thousands to tens of thousands. Challenges include finding and forming appropriately skilled teams, access to data, data quality assessment, and engagement with a research community new to big data. The authors share their experience and perspective on the work required to build and validate a pediatric hearing research database that integrates clinical data for over 185,000 patients from the electronic health record systems of three major academic medical centers.

Figure 1

An example report for the “Testing Method” field. This report summarizes the data in the database table “audiogram-data.” Summary statistics, such as the number of observations and fields, are given at the top of the report. Fields in the database are shown in the left column. In the middle column, summary statistics about the values of the field “testing method” are shown, including the number of unique values, the sparsity (at 4.7%, >95% of the observations in the field contain values), and the 20 most common values in the field. Finally, the distribution of the frequency of each common value is shown as a graph on the right side of the figure.