We need to think about data governance for dementia research in a digital era
Abstract Background Research into Alzheimer’s disease and other dementias increasingly involves large-scale data-sharing initiatives. The development of novel digital tools and assessments is likely to increase the need for these. This presents ethics and governance challenges to ensure the use of t...
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| Format: | Article |
| Language: | English |
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BMC
2020-01-01
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| Series: | Alzheimer’s Research & Therapy |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13195-020-0584-y |
| _version_ | 1818615844504076288 |
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| author | Richard Milne Carol Brayne |
| author_facet | Richard Milne Carol Brayne |
| author_sort | Richard Milne |
| collection | DOAJ |
| description | Abstract Background Research into Alzheimer’s disease and other dementias increasingly involves large-scale data-sharing initiatives. The development of novel digital tools and assessments is likely to increase the need for these. This presents ethics and governance challenges to ensure the use of these data is able to maximise the benefit to patients and the public. Discussion We consider the challenges associated with informed consent and governance in the context of dementia research. We set out the potential of novel data governance approaches for the future of data sharing for dementia. Summary The data trust model proposed in discussions of data governance may have potentially valuable application for dementia research. Such inclusive approaches to trustworthy data governance should be considered as data-sharing initiatives are established and develop. |
| first_indexed | 2024-12-16T16:40:22Z |
| format | Article |
| id | doaj.art-c4c6563b1c3f4cdda7477f5f9f47c112 |
| institution | Directory Open Access Journal |
| issn | 1758-9193 |
| language | English |
| last_indexed | 2024-12-16T16:40:22Z |
| publishDate | 2020-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Alzheimer’s Research & Therapy |
| spelling | doaj.art-c4c6563b1c3f4cdda7477f5f9f47c1122022-12-21T22:24:20ZengBMCAlzheimer’s Research & Therapy1758-91932020-01-011211310.1186/s13195-020-0584-yWe need to think about data governance for dementia research in a digital eraRichard Milne0Carol Brayne1Society and Ethics Research Group, Wellcome Genome CampusInstitute of Public Health, University of CambridgeAbstract Background Research into Alzheimer’s disease and other dementias increasingly involves large-scale data-sharing initiatives. The development of novel digital tools and assessments is likely to increase the need for these. This presents ethics and governance challenges to ensure the use of these data is able to maximise the benefit to patients and the public. Discussion We consider the challenges associated with informed consent and governance in the context of dementia research. We set out the potential of novel data governance approaches for the future of data sharing for dementia. Summary The data trust model proposed in discussions of data governance may have potentially valuable application for dementia research. Such inclusive approaches to trustworthy data governance should be considered as data-sharing initiatives are established and develop.https://doi.org/10.1186/s13195-020-0584-yDementiaEthicsData governanceData sharingData trustDigital health |
| spellingShingle | Richard Milne Carol Brayne We need to think about data governance for dementia research in a digital era Alzheimer’s Research & Therapy Dementia Ethics Data governance Data sharing Data trust Digital health |
| title | We need to think about data governance for dementia research in a digital era |
| title_full | We need to think about data governance for dementia research in a digital era |
| title_fullStr | We need to think about data governance for dementia research in a digital era |
| title_full_unstemmed | We need to think about data governance for dementia research in a digital era |
| title_short | We need to think about data governance for dementia research in a digital era |
| title_sort | we need to think about data governance for dementia research in a digital era |
| topic | Dementia Ethics Data governance Data sharing Data trust Digital health |
| url | https://doi.org/10.1186/s13195-020-0584-y |
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