Dynamically adjusting case reporting policy to maximize privacy and public health utility in the face of a pandemic

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Abstract

Objective: Supporting public health research and the public's situational awareness during a pandemic requires continuous dissemination of infectious disease surveillance data. Legislation, such as the Health Insurance Portability and Accountability Act of 1996 and recent state-level regulations, permits sharing deidentified person-level data; however, current deidentification approaches are limited. Namely, they are inefficient, relying on retrospective disclosure risk assessments, and do not flex with changes in infection rates or population demographics over time. In this paper, we introduce a framework to dynamically adapt deidentification for near-real time sharing of person-level surveillance data. Materials and Methods: The framework leverages a simulation mechanism, capable of application at any geographic level, to forecast the reidentification risk of sharing the data under a wide range of generalization policies. The estimates inform weekly, prospective policy selection to maintain the proportion of records corresponding to a group size less than 11 (PK11) at or below 0.1. Fixing the policy at the start of each week facilitates timely dataset updates and supports sharing granular date information. We use August 2020 through October 2021 case data from Johns Hopkins University and the Centers for Disease Control and Prevention to demonstrate the framework's effectiveness in maintaining the PK11 threshold of 0.01. Results: When sharing COVID-19 county-level case data across all US counties, the framework's approach meets the threshold for 96.2% of daily data releases, while a policy based on current deidentification techniques meets the threshold for 32.3%. Conclusion: Periodically adapting the data publication policies preserves privacy while enhancing public health utility through timely updates and sharing epidemiologically critical features.

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APA

Brown, J. T., Yan, C., Xia, W., Yin, Z., Wan, Z., Gkoulalas-Divanis, A., … Malin, B. A. (2022). Dynamically adjusting case reporting policy to maximize privacy and public health utility in the face of a pandemic. Journal of the American Medical Informatics Association, 29(5), 853–863. https://doi.org/10.1093/jamia/ocac011

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