De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical research
Over the last decades the advent of digital documentation has provided research communities with valuable resources of information for clinical research. To utilize the potential of information about patients, their health care, and its outcome that is already available in different registers, the p...
| Main Authors: | , |
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| Format: | Article |
| Language: | English |
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Upsala Medical Society
2019-01-01
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| Series: | Upsala Journal of Medical Sciences |
| Subjects: | |
| Online Access: | http://dx.doi.org/10.1080/03009734.2018.1527420 |
| _version_ | 1797723384617893888 |
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| author | Tomas Snäckerström Christian Johansen |
| author_facet | Tomas Snäckerström Christian Johansen |
| author_sort | Tomas Snäckerström |
| collection | DOAJ |
| description | Over the last decades the advent of digital documentation has provided research communities with valuable resources of information for clinical research. To utilize the potential of information about patients, their health care, and its outcome that is already available in different registers, the possibility to cross-reference information from different registers is inevitably required. When performing linkage, we are currently forced to disclose information of participating subjects either to the administration of the other register(s) or to the researcher. Considering the increased concern of issues around personal integrity, this is a limitation that affects the ethical implications of proposed research and that might in the end affect the willingness of subjects to participate in registers. For this reason we propose a different methodology for performing cross-referencing, one that effectively prevents information leakage between the different organizations participating in linking the data. We believe that it is possible to use commonly adopted technologies within the area of data security and encryption to perform linkage without disclosing any sensitive information between different participants. In this paper we demonstrate how common techniques of encryption could be implemented to achieve that and furthermore significantly simplify discovery and feasibility surveying ahead of studies. |
| first_indexed | 2024-03-12T10:02:07Z |
| format | Article |
| id | doaj.art-1f73456c536c41aaa99307ef7186fb91 |
| institution | Directory Open Access Journal |
| issn | 0300-9734 2000-1967 |
| language | English |
| last_indexed | 2024-03-12T10:02:07Z |
| publishDate | 2019-01-01 |
| publisher | Upsala Medical Society |
| record_format | Article |
| series | Upsala Journal of Medical Sciences |
| spelling | doaj.art-1f73456c536c41aaa99307ef7186fb912023-09-02T11:35:21ZengUpsala Medical SocietyUpsala Journal of Medical Sciences0300-97342000-19672019-01-011241293210.1080/03009734.2018.15274201527420De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical researchTomas Snäckerström0Christian Johansen1Uppsala University, Uppsala Clinical Research CenterUppsala University, Uppsala Clinical Research CenterOver the last decades the advent of digital documentation has provided research communities with valuable resources of information for clinical research. To utilize the potential of information about patients, their health care, and its outcome that is already available in different registers, the possibility to cross-reference information from different registers is inevitably required. When performing linkage, we are currently forced to disclose information of participating subjects either to the administration of the other register(s) or to the researcher. Considering the increased concern of issues around personal integrity, this is a limitation that affects the ethical implications of proposed research and that might in the end affect the willingness of subjects to participate in registers. For this reason we propose a different methodology for performing cross-referencing, one that effectively prevents information leakage between the different organizations participating in linking the data. We believe that it is possible to use commonly adopted technologies within the area of data security and encryption to perform linkage without disclosing any sensitive information between different participants. In this paper we demonstrate how common techniques of encryption could be implemented to achieve that and furthermore significantly simplify discovery and feasibility surveying ahead of studies.http://dx.doi.org/10.1080/03009734.2018.1527420data linkagedata protectionethicsregistry research |
| spellingShingle | Tomas Snäckerström Christian Johansen De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical research Upsala Journal of Medical Sciences data linkage data protection ethics registry research |
| title | De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical research |
| title_full | De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical research |
| title_fullStr | De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical research |
| title_full_unstemmed | De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical research |
| title_short | De-identified linkage of data across separate registers: a proposal for improved protection of personal information in registry-based clinical research |
| title_sort | de identified linkage of data across separate registers a proposal for improved protection of personal information in registry based clinical research |
| topic | data linkage data protection ethics registry research |
| url | http://dx.doi.org/10.1080/03009734.2018.1527420 |
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