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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Abstrakt

Tytuł:: Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK.
Autorzy:: Jones LA; Department of Psychiatry, University of Cambridge, Cambridge, UK.
Nelder JR; Department of Psychiatry, University of Cambridge, Cambridge, UK.
Fryer JM; Department of Psychiatry, University of Cambridge, Cambridge, UK.
Alsop PH; Cambridge, UK.
Geary MR; Cambridge, UK.
Prince M; Cambridge, UK.
Cardinal RN; Department of Psychiatry, University of Cambridge, Cambridge, UK .; Liaison Psychiatry Service, Cambridgeshire and Peterborough NHS Foundation Trust, Cambridge, UK.
Źródło:: BMJ open [BMJ Open] 2022 Apr 27; Vol. 12 (4), pp. e057579. Date of Electronic Publication: 2022 Apr 27.
Typ publikacji:: Journal Article; Randomized Controlled Trial; Research Support, Non-U.S. Gov't
Język:: English
Imprint Name(s):: Original Publication: [London] : BMJ Publishing Group Ltd, 2011-
MeSH Terms:: COVID-19*
Public Opinion*
Health Services ; Humans ; Information Dissemination ; Informed Consent/psychology ; State Medicine ; United Kingdom
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Grant Information:: MC_PC_17213 United Kingdom MRC_ Medical Research Council; MR/W014386/1 United Kingdom MRC_ Medical Research Council; United Kingdom DH_ Department of Health
Contributed Indexing:: Keywords: health informatics; health policy; information management; mental health
Molecular Sequence:: ISRCTN ISRCTN37444142
Entry Date(s):: Date Created: 20220428 Date Completed: 20220429 Latest Revision: 20220716
Update Code:: 20240104
PubMed Central ID:: PMC9058801
DOI:: 10.1136/bmjopen-2021-057579
PMID:: 35477868
: Czasopismo naukowe

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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.
Competing Interests: Competing interests: None declared.
(© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

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