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Examining public views on decentralised health data sharing

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

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Examining public views on decentralised health data sharing. / Neumann, Victoria; Davidge, Gail; Harding, Michael et al.
In: PLoS One, Vol. 18, No. 3 , e0282257, 02.03.2023, p. e0282257.

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

Harvard

Neumann, V, Davidge, G, Harding, M, Cunningham, J, Davies, N, Devaney, S, Leeming, G, Holm, S & Ainsworth, J 2023, 'Examining public views on decentralised health data sharing', PLoS One, vol. 18, no. 3 , e0282257, pp. e0282257. https://doi.org/10.1371/journal.pone.0282257

APA

Neumann, V., Davidge, G., Harding, M., Cunningham, J., Davies, N., Devaney, S., Leeming, G., Holm, S., & Ainsworth, J. (2023). Examining public views on decentralised health data sharing. PLoS One, 18(3 ), e0282257. Article e0282257. https://doi.org/10.1371/journal.pone.0282257

Vancouver

Neumann V, Davidge G, Harding M, Cunningham J, Davies N, Devaney S et al. Examining public views on decentralised health data sharing. PLoS One. 2023 Mar 2;18(3 ):e0282257. e0282257. doi: 10.1371/journal.pone.0282257

Author

Neumann, Victoria ; Davidge, Gail ; Harding, Michael et al. / Examining public views on decentralised health data sharing. In: PLoS One. 2023 ; Vol. 18, No. 3 . pp. e0282257.

Bibtex

@article{22c07d26cff6430cbb957fa45ca08533,
title = "Examining public views on decentralised health data sharing",
abstract = "In recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health data sharing contexts. However, there is a significant lack of research that examines public attitudes towards the use of this technology. In this paper, we begin to address this issue and present results from a series of focus groups which explored public views and concerns about engaging with new models of personal health data sharing in the UK. We found that participants were broadly in favour of a shift towards new decentralised models of data sharing. Retaining {\textquoteleft}proof{\textquoteright} of health information stored about patients and the capacity to provide permanent audit trails, enabled by immutable and transparent properties of DLT, were regarded as particularly valuable for our participants and prospective data custodians. Participants also identified other potential benefits such as supporting people to become more health data literate and enabling patients to make informed decisions about how their data was shared and with whom. However, participants also voiced concerns about the potential to further exacerbate existing health and digital inequalities. Participants were also apprehensive about the removal of intermediaries in the design of personal health informatics systems.",
keywords = "Qualitative methods, Public engagement, Co-Design, Personal Health Informatics, Distributed Ledger Technologies, Data sharing",
author = "Victoria Neumann and Gail Davidge and Michael Harding and James Cunningham and Nigel Davies and Sarah Devaney and Gary Leeming and S{\o}ren Holm and John Ainsworth",
year = "2023",
month = mar,
day = "2",
doi = "10.1371/journal.pone.0282257",
language = "English",
volume = "18",
pages = "e0282257",
journal = "PLoS One",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "3 ",

}

RIS

TY - JOUR

T1 - Examining public views on decentralised health data sharing

AU - Neumann, Victoria

AU - Davidge, Gail

AU - Harding, Michael

AU - Cunningham, James

AU - Davies, Nigel

AU - Devaney, Sarah

AU - Leeming, Gary

AU - Holm, Søren

AU - Ainsworth, John

PY - 2023/3/2

Y1 - 2023/3/2

N2 - In recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health data sharing contexts. However, there is a significant lack of research that examines public attitudes towards the use of this technology. In this paper, we begin to address this issue and present results from a series of focus groups which explored public views and concerns about engaging with new models of personal health data sharing in the UK. We found that participants were broadly in favour of a shift towards new decentralised models of data sharing. Retaining ‘proof’ of health information stored about patients and the capacity to provide permanent audit trails, enabled by immutable and transparent properties of DLT, were regarded as particularly valuable for our participants and prospective data custodians. Participants also identified other potential benefits such as supporting people to become more health data literate and enabling patients to make informed decisions about how their data was shared and with whom. However, participants also voiced concerns about the potential to further exacerbate existing health and digital inequalities. Participants were also apprehensive about the removal of intermediaries in the design of personal health informatics systems.

AB - In recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health data sharing contexts. However, there is a significant lack of research that examines public attitudes towards the use of this technology. In this paper, we begin to address this issue and present results from a series of focus groups which explored public views and concerns about engaging with new models of personal health data sharing in the UK. We found that participants were broadly in favour of a shift towards new decentralised models of data sharing. Retaining ‘proof’ of health information stored about patients and the capacity to provide permanent audit trails, enabled by immutable and transparent properties of DLT, were regarded as particularly valuable for our participants and prospective data custodians. Participants also identified other potential benefits such as supporting people to become more health data literate and enabling patients to make informed decisions about how their data was shared and with whom. However, participants also voiced concerns about the potential to further exacerbate existing health and digital inequalities. Participants were also apprehensive about the removal of intermediaries in the design of personal health informatics systems.

KW - Qualitative methods

KW - Public engagement

KW - Co-Design

KW - Personal Health Informatics

KW - Distributed Ledger Technologies

KW - Data sharing

U2 - 10.1371/journal.pone.0282257

DO - 10.1371/journal.pone.0282257

M3 - Journal article

C2 - 36862723

VL - 18

SP - e0282257

JO - PLoS One

JF - PLoS One

SN - 1932-6203

IS - 3

M1 - e0282257

ER -