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Health data stewardship: achieving trust through accountability in health data sharing for research

Research output: Contribution to Journal/Magazine › Journal article › peer-review

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Health data stewardship: achieving trust through accountability in health data sharing for research. / Bartlett, Benjamin; Ainsworth, John; Cunningham, James et al.
In: Law, Innovation and Technology, Vol. 16, No. 2, 30.11.2024, p. 517-557.

Research output: Contribution to Journal/Magazine › Journal article › peer-review

Harvard

Bartlett, B, Ainsworth, J, Cunningham, J, Davidge, G, Harding, M, Holm, S, Neumann, V & Devaney, S 2024, 'Health data stewardship: achieving trust through accountability in health data sharing for research', Law, Innovation and Technology, vol. 16, no. 2, pp. 517-557. https://doi.org/10.1080/17579961.2024.2392937

APA

Bartlett, B., Ainsworth, J., Cunningham, J., Davidge, G., Harding, M., Holm, S., Neumann, V., & Devaney, S. (2024). Health data stewardship: achieving trust through accountability in health data sharing for research. Law, Innovation and Technology, 16(2), 517-557. https://doi.org/10.1080/17579961.2024.2392937

Vancouver

Bartlett B, Ainsworth J, Cunningham J, Davidge G, Harding M, Holm S et al. Health data stewardship: achieving trust through accountability in health data sharing for research. Law, Innovation and Technology. 2024 Nov 30;16(2):517-557. Epub 2024 Aug 22. doi: 10.1080/17579961.2024.2392937

Author

Bartlett, Benjamin ; Ainsworth, John ; Cunningham, James et al. / Health data stewardship : achieving trust through accountability in health data sharing for research. In: Law, Innovation and Technology. 2024 ; Vol. 16, No. 2. pp. 517-557.

Bibtex

@article{68147d9a935242998d46d4ebe3bbb2f5,
title = "Health data stewardship: achieving trust through accountability in health data sharing for research",
abstract = "Attempts in the UK to regulate the sharing and use of health data for secondary purposes such as research have been dogged by controversy and failure. This article considers health data stewardship as a response to these challenges. It develops a normative understanding of the concept through an examination of stewardship in a variety of contexts. This leads to a definition of health data stewardship which encapsulates the necessary constituent elements that focus group participants viewed as crucial to an accountable health data sharing scheme in which they could place their trust. It examines two potential mechanisms for facilitating health data stewardship, the data trust and the data cooperative, arguing that whichever regulatory mechanism is adopted must incorporate mechanisms responsive to citizens{\textquoteright} requirements for accountable stewardship of their data. Without this, their wishes, and societal aims of improving health through research using comprehensive data sets may be unachievable.",
author = "Benjamin Bartlett and John Ainsworth and James Cunningham and Gail Davidge and Mike Harding and S{\o}ren Holm and Victoria Neumann and Sarah Devaney",
year = "2024",
month = nov,
day = "30",
doi = "10.1080/17579961.2024.2392937",
language = "English",
volume = "16",
pages = "517--557",
journal = "Law, Innovation and Technology",
issn = "1757-9961",
publisher = "Informa UK Limited",
number = "2",

}

RIS

TY - JOUR

T1 - Health data stewardship

T2 - achieving trust through accountability in health data sharing for research

AU - Bartlett, Benjamin

AU - Ainsworth, John

AU - Cunningham, James

AU - Davidge, Gail

AU - Harding, Mike

AU - Holm, Søren

AU - Neumann, Victoria

AU - Devaney, Sarah

PY - 2024/11/30

Y1 - 2024/11/30

N2 - Attempts in the UK to regulate the sharing and use of health data for secondary purposes such as research have been dogged by controversy and failure. This article considers health data stewardship as a response to these challenges. It develops a normative understanding of the concept through an examination of stewardship in a variety of contexts. This leads to a definition of health data stewardship which encapsulates the necessary constituent elements that focus group participants viewed as crucial to an accountable health data sharing scheme in which they could place their trust. It examines two potential mechanisms for facilitating health data stewardship, the data trust and the data cooperative, arguing that whichever regulatory mechanism is adopted must incorporate mechanisms responsive to citizens’ requirements for accountable stewardship of their data. Without this, their wishes, and societal aims of improving health through research using comprehensive data sets may be unachievable.

AB - Attempts in the UK to regulate the sharing and use of health data for secondary purposes such as research have been dogged by controversy and failure. This article considers health data stewardship as a response to these challenges. It develops a normative understanding of the concept through an examination of stewardship in a variety of contexts. This leads to a definition of health data stewardship which encapsulates the necessary constituent elements that focus group participants viewed as crucial to an accountable health data sharing scheme in which they could place their trust. It examines two potential mechanisms for facilitating health data stewardship, the data trust and the data cooperative, arguing that whichever regulatory mechanism is adopted must incorporate mechanisms responsive to citizens’ requirements for accountable stewardship of their data. Without this, their wishes, and societal aims of improving health through research using comprehensive data sets may be unachievable.

U2 - 10.1080/17579961.2024.2392937

DO - 10.1080/17579961.2024.2392937

M3 - Journal article

VL - 16

SP - 517

EP - 557

JO - Law, Innovation and Technology

JF - Law, Innovation and Technology

SN - 1757-9961

IS - 2

ER -