{"title":"《美国总检察长吃了我的数据:特朗普后重建美国卫生数据链接基础设施的欧洲经验》","authors":"Julia Lynch, Michael Tu","doi":"10.1215/03616878-12262648","DOIUrl":null,"url":null,"abstract":"<p><p>Health data linkage systems are essential for understanding and addressing health inequalities, yet the United States' 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. We 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 US due to privacy concerns. France's tight controls on access limit usability to elite analysts, undermining inequality. England's still 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 post-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.</p>","PeriodicalId":54812,"journal":{"name":"Journal of Health Politics Policy and Law","volume":" ","pages":""},"PeriodicalIF":2.8000,"publicationDate":"2025-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The DOGE Ate My Data: Lessons from Europe for Rebuilding the Health Data Linkage Infrastructure in the US after Trump.\",\"authors\":\"Julia Lynch, Michael Tu\",\"doi\":\"10.1215/03616878-12262648\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Health data linkage systems are essential for understanding and addressing health inequalities, yet the United States' 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. We 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 US due to privacy concerns. France's tight controls on access limit usability to elite analysts, undermining inequality. England's still 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 post-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.</p>\",\"PeriodicalId\":54812,\"journal\":{\"name\":\"Journal of Health Politics Policy and Law\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":2.8000,\"publicationDate\":\"2025-10-08\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Health Politics Policy and Law\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1215/03616878-12262648\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Health Politics Policy and Law","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1215/03616878-12262648","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
The DOGE Ate My Data: Lessons from Europe for Rebuilding the Health Data Linkage Infrastructure in the US after Trump.
Health data linkage systems are essential for understanding and addressing health inequalities, yet the United States' 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. We 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 US due to privacy concerns. France's tight controls on access limit usability to elite analysts, undermining inequality. England's still 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 post-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.
期刊介绍:
A leading journal in its field, and the primary source of communication across the many disciplines it serves, the Journal of Health Politics, Policy and Law focuses on the initiation, formulation, and implementation of health policy and analyzes the relations between government and health—past, present, and future.