Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.
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Authors
Nelder, Jenny R
Fryer, Joseph M
Alsop, Philip H
Geary, Michael R
Prince, Mark
Publication Date
2022-04-27Journal Title
BMJ Open
ISSN
2044-6055
Publisher
BMJ Journals
Type
Article
This Version
AM
Metadata
Show full item recordCitation
Jones, L., Nelder, J. R., Fryer, J. M., Alsop, P. H., Geary, M. R., Prince, M., & Cardinal, R. (2022). Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.. BMJ Open https://doi.org/10.1136/bmjopen-2021-057579
Abstract
OBJECTIVES: UK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences. DESIGN/SETTING/INTERVENTIONS/OUTCOMES: Pre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data. PARTICIPANTS: Open to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition. RESULTS: Most (76%) supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with geographical distance and was slightly less for MH than PH data, with small framing effects. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A majority (89%) supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during COVID-19. CONCLUSIONS: Support for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad support. TRIAL REGISTRATION NUMBER: ISRCTN37444142.
Relationships
Is supplemented by: https://doi.org/10.17863/CAM.75784
Sponsorship
Medical Research Council (MC_PC_17213)
MRC (via Swansea University) (DATAMIND 106893)
National Institute for Health Research (NIHRDH-IS-BRC-1215-20014)
Embargo Lift Date
2025-04-07
Identifiers
External DOI: https://doi.org/10.1136/bmjopen-2021-057579
This record's URL: https://www.repository.cam.ac.uk/handle/1810/335900
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