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dc.contributor.authorJones, Linda A
dc.contributor.authorNelder, Jenny R
dc.contributor.authorFryer, Joseph M
dc.contributor.authorAlsop, Philip H
dc.contributor.authorGeary, Michael R
dc.contributor.authorPrince, Mark
dc.contributor.authorCardinal, Rudolf N
dc.description.abstractOBJECTIVES: 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.
dc.rightsAttribution 4.0 International
dc.titlePublic opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.
dc.publisher.departmentDepartment of Psychiatry
prism.publicationNameBMJ Open
dc.contributor.orcidJones, Linda A [0000-0001-9347-5715]
dc.contributor.orcidCardinal, Rudolf N [0000-0002-8751-5167]
rioxxterms.typeJournal Article/Review
pubs.funder-project-idMedical Research Council (MC_PC_17213)
pubs.funder-project-idMRC (via Swansea University) (DATAMIND 106893)
pubs.funder-project-idNational Institute for Health Research (IS-BRC-1215-20014)
pubs.funder-project-idMedical Research Council (MR/W014386/1)
cam.orpheus.successWed May 25 11:13:37 BST 2022 - Embargo updated
pubs.licence-display-nameApollo Repository Deposit Licence Agreement

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Attribution 4.0 International
Except where otherwise noted, this item's licence is described as Attribution 4.0 International