Balancing Data Provision and Data Protection: A Natural Experiment With HIV and Syphilis Surveillance Data in the United States

Author:

Delcher ChrisORCID,Wang Yanning1,Gusovsky Amanda V.,Benitez Joseph2

Affiliation:

1. Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, Gainesville, FL

2. Department of Health Management and Policy, College of Public Health, University of Kentucky, Lexington, KY

Abstract

Background Public release of health data typically requires statistical disclosure limitation (SDL), but scant research demonstrates how real-world SDL affects data usability. Recent changes of federal data re-release policy allow a pseudo-counterfactual comparison of HIV and syphilis data suppression rules. Methods Incident counts (2019) of HIV and syphilis infections by county for Black and White populations were downloaded from the US Centers for Disease Control and Prevention. We quantified and compared suppression status by disease and county between Black and White populations and calculated incident rate ratios for counties with statistically reliable counts. Results Approximately 50% of US counties have incident HIV counts suppressed for Black and White populations compared with only 5% for syphilis, which has an alternative suppression strategy. The county population sizes protected by a numerator disclosure rule (<4) spans several orders of magnitude. Calculations of incident rate ratios, used as a measure of health disparity, were impossible in the 220 counties most susceptible to an HIV outbreak. Conclusions Balancing tradeoffs between providing and protecting data are key to health initiatives worldwide. We encourage an increase in empirical research on the impact of SDL, especially in the context of health disparities, and recommend new approaches to avoid the “oppression of data suppression.”

Publisher

Ovid Technologies (Wolters Kluwer Health)

Subject

Infectious Diseases,Microbiology (medical),Public Health, Environmental and Occupational Health,Dermatology

Reference16 articles.

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4. America's HIV epidemic analysis dashboard: Protocol for a data resource to support ending the HIV epidemic in the United States;JMIR Public Health Surveill,2022

5. Use of Race and Ethnicity in Public Health Surveillance. Summary of the DC/ATSDR workshop. Atlanta, Georgia, March 1–2, 1993;MMWR Recomm Rep,1993

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