Open AccessPerspective on the Development of a Large-Scale Clinical Data Repository for Pediatric Hearing Research
Author(s) -
Jeffrey W. Pennington,
Byron Ruth,
Jeffrey M. Miller,
Joy Peterson,
Baichen Xu,
Aaron J. Masino,
Ian D. Krantz,
Juliana Manganella,
Tamar Gomes,
Derek J. Stiles,
Margaret A. Kenna,
Linda J. Hood,
John A. Germiller,
E. Bryan Crenshaw
Publication year - 2019
Publication title -
ear and hearing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.577
H-Index - 109
eISSN - 1538-4667
pISSN - 0196-0202
DOI - 10.1097/aud.0000000000000779
Subject(s) - software deployment , observational study , data science , data collection , perspective (graphical) , computer science , data quality , big data , data access , scale (ratio) , medicine , database , data mining , engineering , operations management , artificial intelligence , metric (unit) , statistics , physics , mathematics , pathology , quantum mechanics , operating system
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.