The journey of research data: Accessing nordic health data for the purposes of developing an algorithm
This article traces the journey of Nordic health data requested for developing a healthcare algorithm. We focus on the legal requirements and highlight that differences in the legislation of Denmark, Norway and Iceland, and the interpretation thereof by responsible bodies, can pose a barrier for sci...
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ftcopenhagenunip:oai:pure.atira.dk:publications/c0a783f6-cdfb-4e1d-9314-4f0928f9de75 2023-05-15T16:49:58+02:00 The journey of research data: Accessing nordic health data for the purposes of developing an algorithm Ó Cathaoir, Katharina Gunnarsdóttir, Hrefna Dögg Hartlev, Mette 2022 https://curis.ku.dk/portal/da/publications/the-journey-of-research-data-accessing-nordic-health-data-for-the-purposes-of-developing-an-algorithm(c0a783f6-cdfb-4e1d-9314-4f0928f9de75).html https://doi.org/10.1177%2F09685332211046179 eng eng info:eu-repo/semantics/closedAccess Ó Cathaoir , K , Gunnarsdóttir , H D & Hartlev , M 2022 , ' The journey of research data: Accessing nordic health data for the purposes of developing an algorithm ' , Medical Law International , vol. 22 , no. 1 , pp. 52-74 . https://doi.org/10.1177%2F09685332211046179 /dk/atira/pure/core/keywords/TheFacultyOfLaw Faculty of Law article 2022 ftcopenhagenunip 2023-03-15T23:55:05Z This article traces the journey of Nordic health data requested for developing a healthcare algorithm. We focus on the legal requirements and highlight that differences in the legislation of Denmark, Norway and Iceland, and the interpretation thereof by responsible bodies, can pose a barrier for scientific researchers. In addition, non-legal institutional requirements or practices may hamper data access. First, despite some European harmonization, the mandate of research ethics committees and the data protection authorities vary in the three countries. Second, domestic institutions impose tailored requirements, sometimes only allowing domestic or affiliated researchers to access data sets. Third, the manner in which a dataset is collected, catalogued and stored has implications for data access. We make several recommendations for increasing transparency in Nordic data access, such as, increasing knowledge sharing regarding interpretation of General Data Protection Regulation (GDPR) criteria, adopting clearer regulations and pursuing greater citizen engagement in secondary use of health data. Article in Journal/Newspaper Iceland University of Copenhagen: Research Norway |
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University of Copenhagen: Research |
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ftcopenhagenunip |
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English |
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/dk/atira/pure/core/keywords/TheFacultyOfLaw Faculty of Law |
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/dk/atira/pure/core/keywords/TheFacultyOfLaw Faculty of Law Ó Cathaoir, Katharina Gunnarsdóttir, Hrefna Dögg Hartlev, Mette The journey of research data: Accessing nordic health data for the purposes of developing an algorithm |
topic_facet |
/dk/atira/pure/core/keywords/TheFacultyOfLaw Faculty of Law |
description |
This article traces the journey of Nordic health data requested for developing a healthcare algorithm. We focus on the legal requirements and highlight that differences in the legislation of Denmark, Norway and Iceland, and the interpretation thereof by responsible bodies, can pose a barrier for scientific researchers. In addition, non-legal institutional requirements or practices may hamper data access. First, despite some European harmonization, the mandate of research ethics committees and the data protection authorities vary in the three countries. Second, domestic institutions impose tailored requirements, sometimes only allowing domestic or affiliated researchers to access data sets. Third, the manner in which a dataset is collected, catalogued and stored has implications for data access. We make several recommendations for increasing transparency in Nordic data access, such as, increasing knowledge sharing regarding interpretation of General Data Protection Regulation (GDPR) criteria, adopting clearer regulations and pursuing greater citizen engagement in secondary use of health data. |
format |
Article in Journal/Newspaper |
author |
Ó Cathaoir, Katharina Gunnarsdóttir, Hrefna Dögg Hartlev, Mette |
author_facet |
Ó Cathaoir, Katharina Gunnarsdóttir, Hrefna Dögg Hartlev, Mette |
author_sort |
Ó Cathaoir, Katharina |
title |
The journey of research data: Accessing nordic health data for the purposes of developing an algorithm |
title_short |
The journey of research data: Accessing nordic health data for the purposes of developing an algorithm |
title_full |
The journey of research data: Accessing nordic health data for the purposes of developing an algorithm |
title_fullStr |
The journey of research data: Accessing nordic health data for the purposes of developing an algorithm |
title_full_unstemmed |
The journey of research data: Accessing nordic health data for the purposes of developing an algorithm |
title_sort |
journey of research data: accessing nordic health data for the purposes of developing an algorithm |
publishDate |
2022 |
url |
https://curis.ku.dk/portal/da/publications/the-journey-of-research-data-accessing-nordic-health-data-for-the-purposes-of-developing-an-algorithm(c0a783f6-cdfb-4e1d-9314-4f0928f9de75).html https://doi.org/10.1177%2F09685332211046179 |
geographic |
Norway |
geographic_facet |
Norway |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
Ó Cathaoir , K , Gunnarsdóttir , H D & Hartlev , M 2022 , ' The journey of research data: Accessing nordic health data for the purposes of developing an algorithm ' , Medical Law International , vol. 22 , no. 1 , pp. 52-74 . https://doi.org/10.1177%2F09685332211046179 |
op_rights |
info:eu-repo/semantics/closedAccess |
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1766040143867674624 |