《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》

IF 2.8 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES
Julia Lynch, Michael Tu
{"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}
引用次数: 0

摘要

卫生数据链接系统对于理解和解决卫生不平等问题至关重要,但美国的这一系统已经受到法律和制度限制,并受到特朗普第二任期政府政策的进一步侵蚀。其中包括取消数据收集的资金,将与不平等相关的研究政治化,以及违反保护个人数据的隐私规则。本文利用文献分析、二手数据和比较机构审查来记录美国卫生数据基础设施的最新变化,并评估来自法国、瑞典和英国的替代模型。我们发现,特朗普政府的行为严重破坏了美国卫生数据联动体系,扰乱了数据生产,损害了公众信任。像瑞典这样的集中式系统提供了广泛的数据链接能力,但由于隐私问题,在美国可能不可行。法国对访问的严格控制限制了精英分析师的可用性,从而破坏了不平等。英格兰仍处于萌芽阶段的医疗系统为公平获取健康的社会、经济和政治决定因素数据提供了一个模式。特朗普后重建美国卫生数据链接基础设施将需要恢复公众信任,恢复关键社会人口指标的收集,并确保获取的公平性。国际上的例子为建立一个更具政治可持续性和包容性的体系提供了指导。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
CiteScore
7.30
自引率
7.10%
发文量
46
审稿时长
>12 weeks
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.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:604180095
Book学术官方微信