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金矿,但仍不是克朗代克:北欧登记数据在健康不平等研究中的应用。

A gold mine, but still no Klondike: Nordic register data in health inequalities research.

机构信息

Department of Social Work, Child Welfare and Social Policy, OsloMet - Oslo Metropolitan University, Norway.

Department of Public Health Sciences, Stockholm University, Sweden.

出版信息

Scand J Public Health. 2019 Aug;47(6):618-630. doi: 10.1177/1403494819858046. Epub 2019 Jul 10.

Abstract

Future research on health inequality relies on data that cover life-course exposure, different birth cohorts and variation in policy contexts. Nordic register data have long been celebrated as a 'gold mine' for research, and fulfil many of these criteria. However, access to and use of such data are hampered by a number of hurdles and bottlenecks. We present and discuss the experiences of an ongoing Nordic consortium from the process of acquiring register data on socio-economic conditions and health in Denmark, Finland, Norway and Sweden. : We compare experiences of data-acquisition processes from a researcher's perspective in the four countries and discuss the comparability of register data and the modes of collaboration available to researchers, given the prevailing ethical and legal restrictions. : The application processes we experienced were time-consuming, and decision structures were often fragmented. We found substantial variation between the countries in terms of processing times, costs and the administrative burden of the researcher. Concerned agencies differed in policy and practice which influenced both how and when data were delivered. These discrepancies present a challenge to comparative research.

摘要

未来关于健康不平等的研究依赖于能够涵盖整个生命过程暴露、不同出生队列和政策环境变化的数据。北欧的登记数据长期以来一直被誉为研究的“金矿”,并且符合许多这些标准。然而,获取和使用这些数据受到许多障碍和瓶颈的阻碍。我们介绍并讨论了一个正在进行的北欧联盟在获取丹麦、芬兰、挪威和瑞典社会经济状况和健康登记数据方面的经验。我们从四个国家的研究人员角度比较了数据获取过程的经验,并讨论了在现有伦理和法律限制下,登记数据的可比性和研究人员可获得的合作模式。我们所经历的申请过程耗时且决策结构往往分散。我们发现各国在处理时间、成本和研究人员的行政负担方面存在很大差异。相关机构在政策和实践方面存在差异,这影响了数据的提供方式和时间。这些差异给比较研究带来了挑战。

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