We need to think about data governance for dementia research in a digital era
Published version
Peer-reviewed
Repository URI
Repository DOI
Change log
Authors
Abstract
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.
Description
Funder: National Institute for Health Research; doi: http://dx.doi.org/10.13039/501100000272
Keywords
Journal Title
Conference Name
Journal ISSN
Volume Title
Publisher
Publisher DOI
Sponsorship
Medical Research Council (MR/L023784/1)