Protecting Privacy and Transforming COVID-19 Case Surveillance Datasets for Public Use

TL;DR

This paper details CDC's approach to creating de-identified COVID-19 datasets that balance data utility with privacy, enabling broader public access and research while safeguarding individual confidentiality.

Contribution

It introduces a systematic method for producing privacy-protected, de-identified COVID-19 datasets from large-scale health data, facilitating public sharing and research.

Findings

Public datasets are available via Data.CDC.gov

Restricted datasets are accessible through a data use agreement on GitHub

Automated procedures enable timely data sharing

Abstract

Objectives: Federal open data initiatives that promote increased sharing of federally collected data are important for transparency, data quality, trust, and relationships with the public and state, tribal, local, and territorial (STLT) partners. These initiatives advance understanding of health conditions and diseases by providing data to more researchers, scientists, and policymakers for analysis, collaboration, and valuable use outside CDC responders. This is particularly true for emerging conditions such as COVID-19 where we have much to learn and have evolving data needs. Since the beginning of the outbreak, CDC has collected person-level, de-identified data from jurisdictions and currently has over 8 million records, increasing each day. This paper describes how CDC designed and produces two de-identified public datasets from these collected data. Materials and Methods: Data elements were included based on the usefulness, public request, and privacy implications; specific field values were suppressed to reduce risk of reidentification and exposure of confidential information. Datasets were created and verified for privacy and confidentiality using data management platform analytic tools as well as R scripts. Results: Unrestricted data are available to the public through Data.CDC.gov and restricted data, with additional fields, are available with a data use agreement through a private repository on GitHub.com. Practice Implications: Enriched understanding of the available public data, the methods used to create these data, and the algorithms used to protect privacy of de-identified individuals allow for improved data use. Automating data generation procedures allows greater and more timely sharing of data.