The DOGE Ate My Data: Lessons from Europe for Rebuilding the US Health Data Linkage Infrastructure After Trump

Area of Science:

• Public Health
• Health Informatics
• Health Policy

Background:

• Health data linkage systems are crucial for analyzing and mitigating health disparities.
• The US health data infrastructure faced significant challenges due to policies enacted during the second Trump administration.
• These policies included defunding data collection, politicizing research on inequalities, and compromising data privacy.

Purpose of the Study:

• To document changes in the US health data linkage system under the second Trump administration.
• To evaluate alternative health data linkage models from France, Sweden, and England.
• To propose recommendations for rebuilding a more robust and equitable US health data infrastructure.

Main Methods:

• Documentary analysis of policy changes.
• Secondary data analysis of health data infrastructure.
• Comparative institutional review of international health data systems (France, Sweden, England).

Main Results:

• The Trump administration's policies significantly damaged the US health data linkage system, disrupting data production and eroding public trust.
• Sweden's centralized system offers extensive linkage but faces feasibility issues in the US due to privacy concerns.
• France's restrictive access limits usability, while England's developing system shows promise for equitable access to social determinants of health data.

Conclusions:

• Rebuilding the US health data linkage infrastructure necessitates restoring public trust, reinstating sociodemographic data collection, and ensuring equitable data access.
• International models offer valuable insights for creating a more politically sustainable and inclusive system.
• Addressing health inequalities requires a strong, trustworthy, and accessible health data linkage system.