Skovgaard Lea, Ekstrøm Claus Thorn, Svendsen Mette N, Hoeyer Klaus
Department of Public Health, University of Copenhagen, Copenhagen K, Denmark.
PLoS One. 2024 Dec 26;19(12):e0312558. doi: 10.1371/journal.pone.0312558. eCollection 2024.
Everyday clinical care generates vast amounts of digital data. A broad range of actors are interested in reusing these data for various purposes. Such reuse of health data could support medical research, healthcare planning, technological innovation, and lead to increased financial revenue. Yet, reuse also raises questions about what data subjects think about the use of health data for various different purposes. Based on a survey with 1071 respondents conducted in 2021 in Denmark, this article explores attitudes to health data reuse. Denmark is renowned for its advanced integration of data infrastructures, facilitating data reuse. This is therefore a relevant setting from which to explore public attitudes to reuse, both as authorities around the globe are currently working to facilitate data reuse opportunities, and in the light of the recent agreement on the establishment in 2024 of the European Health Data Space (EHDS) within the European Union (EU). Our study suggests that there are certain forms of health data reuse-namely transnational data sharing, commercial involvement, and use of data as national economic assets-which risk undermining public support for health data reuse. However, some of the purposes that the EHDS is supposed to facilitate are these three controversial purposes. Failure to address these public concerns could well challenge the long-term legitimacy and sustainability of the data infrastructures currently under construction.
日常临床护理会产生大量数字数据。众多行为主体都有意出于各种目的重新利用这些数据。这种对健康数据的再利用能够支持医学研究、医疗规划、技术创新，并带来财政收入的增加。然而，再利用也引发了一些问题，比如数据主体对于将健康数据用于各种不同目的的看法。基于2021年在丹麦对1071名受访者进行的一项调查，本文探讨了对健康数据再利用的态度。丹麦以其先进的数据基础设施整合而闻名，这有助于数据再利用。因此，鉴于全球各国政府目前都在努力创造数据再利用机会，并且鉴于欧盟近期就2024年建立欧洲健康数据空间（EHDS）达成了协议，丹麦是一个探讨公众对再利用态度的相关背景。我们的研究表明，存在某些形式的健康数据再利用——即跨国数据共享、商业参与以及将数据用作国家经济资产——这些存在破坏公众对健康数据再利用支持的风险。然而，EHDS旨在推动的一些目的正是这三个有争议的目的。如果不能解决这些公众关切，很可能会对当前正在建设的数据基础设施的长期合法性和可持续性构成挑战。
