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The DOGE Ate My Data: Lessons from Europe for Rebuilding the US Health Data Linkage Infrastructure After Trump
1University of Pennsylvania.
Abstract:
Health data linkage systems are essential for understanding and addressing health inequalities, yet the US system-already constrained by legal and institutional limitations-has been further eroded by the second Trump administration's policies. These include defunding data collection, politicizing inequality-related research, and breaching privacy rules that protect personal data. This article draws on documentary analysis, secondary data, and comparative institutional review to document recent changes to US health data infrastructure and evaluate alternative models from France, Sweden, and England. The authors find that the Trump administration's actions have severely undermined the US health data linkage system, disrupting the production of data and undermining public trust. A centralized system like Sweden's offers broad data linkage capacity but may not be feasible in the United States because of privacy concerns. France's tight controls on access limit usability to elite analysts, exacerbating inequality. England's nascent system offers a model for equitable access to data on social, economic, and political determinants of health. Rebuilding the US health data linkage infrastructure after Trump will require restoring public trust, restoring collection of key sociodemographic indicators, and ensuring equity in access. International examples provide guidance for a more politically sustainable, inclusive system.
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