The University of Southampton
University of Southampton Institutional Repository

The challenges and opportunities of mental health data sharing in the UK

The challenges and opportunities of mental health data sharing in the UK
The challenges and opportunities of mental health data sharing in the UK
The UK's National Health Service (NHS) generates uniquely rich data that should be rapidly deployed for policy and service improvement, yet researchers report difficulties in accessing these data. Paradoxically, these restrictions are occurring at the same time as the open science movement, which encourages data sharing to improve the rigour, transparency, and replicability of research. We describe the urgency of improvements to data access and propose solutions from a mental health research perspective, although the issues discussed extend to all areas in which analysis and linkage of health data support policy and practice. Actions are needed at every level, from data users and data custodians to government (panel).
2589-7500
e333-e336
Ford, Tamsin
165cccd7-c8dc-41e5-8a6a-9fc954dfca14
Mansfield, Karen L.
b7a12a9b-6d9b-42b7-9d88-7fc3f0a74826
Markham, Sarah
4e74f37e-375a-409c-872d-2109c98a1fd0
McManus, Sally
afaf31a7-0e09-4697-a1df-0f324e14ff0d
John, Ann
85d7c717-a69f-4d18-82a3-37a80eec3736
O'Reilly, Dermot
c8cdf542-089c-41a2-b0e0-4a5cf5eb7380
Newlove-Delgado, Tamsin
cd72b435-0ee1-4fd2-a5ff-4b41f9a42a0e
Iveson, Matthew H.
87643c03-5d2d-4908-b035-c1cef43e4f84
Fazel, Mina
24c4df8f-d9e0-4d84-9353-cee4adafe55e
Munshi, Jayati Das
29d6c67f-46f0-4221-ae09-49e1bc76ef71
Dutta, Rina
279242ab-053e-4e29-8165-0de090ba243d
Leavy, Gerard
dd6efd9f-8633-488c-a07a-2ba728459ed4
Downs, Johnny
a062e656-bd1d-42d4-9ca7-4ab8936cbde1
Foley, Tom
fcc9102a-2de0-4619-b66c-e3ebcdaa3d04
Russell, Abigail
4a12b5c0-ecf4-4ef1-bb80-83e3a61bb0d1
Maguire, Aideen
d699b2b6-f837-485f-b7db-f291c6339d61
Moon, Graham
68cffc4d-72c1-41e9-b1fa-1570c5f3a0b4
Kirkham, Elizabeth J.
aa091dbf-8849-48fd-b394-5d939d9a17b7
Finning, Katie
0d55521d-a60e-4049-b473-1d234edfee49
Russell, Ginny
c1cd0e38-f12b-45eb-9449-661e109c4402
Moore, Anna
397b88a4-c721-43a9-9b1a-bc5508971f78
Jones, Peter B.
f8afa603-f19e-4afa-b997-27f6b842bffd
Shenow, Sarah
a41695f2-86d2-4be9-9ebe-3c5f15e30919
Ford, Tamsin
165cccd7-c8dc-41e5-8a6a-9fc954dfca14
Mansfield, Karen L.
b7a12a9b-6d9b-42b7-9d88-7fc3f0a74826
Markham, Sarah
4e74f37e-375a-409c-872d-2109c98a1fd0
McManus, Sally
afaf31a7-0e09-4697-a1df-0f324e14ff0d
John, Ann
85d7c717-a69f-4d18-82a3-37a80eec3736
O'Reilly, Dermot
c8cdf542-089c-41a2-b0e0-4a5cf5eb7380
Newlove-Delgado, Tamsin
cd72b435-0ee1-4fd2-a5ff-4b41f9a42a0e
Iveson, Matthew H.
87643c03-5d2d-4908-b035-c1cef43e4f84
Fazel, Mina
24c4df8f-d9e0-4d84-9353-cee4adafe55e
Munshi, Jayati Das
29d6c67f-46f0-4221-ae09-49e1bc76ef71
Dutta, Rina
279242ab-053e-4e29-8165-0de090ba243d
Leavy, Gerard
dd6efd9f-8633-488c-a07a-2ba728459ed4
Downs, Johnny
a062e656-bd1d-42d4-9ca7-4ab8936cbde1
Foley, Tom
fcc9102a-2de0-4619-b66c-e3ebcdaa3d04
Russell, Abigail
4a12b5c0-ecf4-4ef1-bb80-83e3a61bb0d1
Maguire, Aideen
d699b2b6-f837-485f-b7db-f291c6339d61
Moon, Graham
68cffc4d-72c1-41e9-b1fa-1570c5f3a0b4
Kirkham, Elizabeth J.
aa091dbf-8849-48fd-b394-5d939d9a17b7
Finning, Katie
0d55521d-a60e-4049-b473-1d234edfee49
Russell, Ginny
c1cd0e38-f12b-45eb-9449-661e109c4402
Moore, Anna
397b88a4-c721-43a9-9b1a-bc5508971f78
Jones, Peter B.
f8afa603-f19e-4afa-b997-27f6b842bffd
Shenow, Sarah
a41695f2-86d2-4be9-9ebe-3c5f15e30919

Ford, Tamsin, Mansfield, Karen L., Markham, Sarah, McManus, Sally, John, Ann, O'Reilly, Dermot, Newlove-Delgado, Tamsin, Iveson, Matthew H., Fazel, Mina, Munshi, Jayati Das, Dutta, Rina, Leavy, Gerard, Downs, Johnny, Foley, Tom, Russell, Abigail, Maguire, Aideen, Moon, Graham, Kirkham, Elizabeth J., Finning, Katie, Russell, Ginny, Moore, Anna, Jones, Peter B. and Shenow, Sarah (2021) The challenges and opportunities of mental health data sharing in the UK. The Lancet Digital Health, 3 (6), e333-e336. (doi:10.1016/S2589-7500(21)00078-9).

Record type: Letter

Abstract

The UK's National Health Service (NHS) generates uniquely rich data that should be rapidly deployed for policy and service improvement, yet researchers report difficulties in accessing these data. Paradoxically, these restrictions are occurring at the same time as the open science movement, which encourages data sharing to improve the rigour, transparency, and replicability of research. We describe the urgency of improvements to data access and propose solutions from a mental health research perspective, although the issues discussed extend to all areas in which analysis and linkage of health data support policy and practice. Actions are needed at every level, from data users and data custodians to government (panel).

Text
1-s2.0-S2589750021000789-main - Version of Record
Download (90kB)

More information

e-pub ahead of print date: 24 May 2021
Published date: 24 May 2021
Additional Information: Funding Information: SMc reports institutional funding from NHS Digital, outside of this Comment. TN-D reports that they are an author of the Mental Health of Children and Young People in England 2020 Survey report and has two applications submitted to NHS Digital for access to survey data. JDM reports grants from the National Institute for Health Research (NIHIR), the Economic and Social Research Council (ESRC), and the Health Foundation, outside of this Comment. PBJ reports salary support from the Higher Education Funding Council through the University of Cambridge and from the NHS. TFol reports employment by NHS Digital, outside of this Comment. All other authors declare no competing interests. KLM is funded by the NIHR Oxford Health NHS Foundation Trust Biomedical Research Centre. JDM is partly supported by the ESRC Centre for Society and Mental Health at King's College London (ESRC reference ES/S012567/1), a jointly funded clinical fellowship from the Health Foundation and Academy of Medical Sciences, and the NIHR Applied Research Collaboration South London at King's College Hospital NHS Foundation Trust. JD and JDM are partly supported by the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust. MF was funded by the NIHR Applied Research Collaboration Oxford and Thames Valley at Oxford Health NHS Foundation Trust. AR is supported by an NIHR advanced fellowship (NIHR300591). KF received funding from Place2Be, Research England's Strategic Priorities Fund, and the ESRC postdoctoral fellowship scheme (ES/V011936/1). AJ is funded by MQ and the Medical Research Council. TN-D is supported by an NIHR advanced fellowship (NIHR300056). The views expressed in this Comment are those of the authors and not necessarily those of the NIHR, the ESRC, the Department of Health and Social Care, or NHS Digital. We are grateful for MQ's support in organising the series of teleconferences and workshops that resulted in the content of this Comment. In particular, we thank Eva Wölbert and Peter B Jones for facilitating the workshop, Sarah Shenow for supporting the survey of researchers' experiences and helping to refine the implementation actions required in the sector, Abigail Russell for leading the survey, Taj Sallamuddin for his advice on the impact of the GDPR on delays in accessing data and for improving figure 1 in our appendix , and our contacts at NHS Digital for supporting the workshop and providing invaluable comments and advice.

Identifiers

Local EPrints ID: 484948
URI: http://eprints.soton.ac.uk/id/eprint/484948
ISSN: 2589-7500
PURE UUID: 2a41f176-07c7-4fe4-9a05-6b6ecf983537
ORCID for Graham Moon: ORCID iD orcid.org/0000-0002-7256-8397

Catalogue record

Date deposited: 24 Nov 2023 18:05
Last modified: 11 May 2024 01:41

Export record

Altmetrics

Contributors

Author: Tamsin Ford
Author: Karen L. Mansfield
Author: Sarah Markham
Author: Sally McManus
Author: Ann John
Author: Dermot O'Reilly
Author: Tamsin Newlove-Delgado
Author: Matthew H. Iveson
Author: Mina Fazel
Author: Jayati Das Munshi
Author: Rina Dutta
Author: Gerard Leavy
Author: Johnny Downs
Author: Tom Foley
Author: Abigail Russell
Author: Aideen Maguire
Author: Graham Moon ORCID iD
Author: Elizabeth J. Kirkham
Author: Katie Finning
Author: Ginny Russell
Author: Anna Moore
Author: Peter B. Jones
Author: Sarah Shenow

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×