Public opinion on sharing data from UK health services for clinical and research purposes without explicit consent

Abstract

BACKGROUND. In the UK, National Health Service (NHS/HSC) data is variably shared between healthcare organizations for direct care, and increasingly used in de-identified forms for research. Few large-scale studies have examined public opinion on sharing, including the treatment of mental health (MH) versus physical health (PH) data. METHODS. Pre-registered anonymous online survey open to all UK residents, recruiting Feb-Sep 2020. Participants were randomized to one of three framing statements regarding MH versus PH data. FINDINGS. Participants numbered 29275; 40% had experienced a MH condition. A majority supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with distance and was slightly less for MH than PH data, with a small framing effect. 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 clear majority supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during the pandemic. INTERPRETATION. 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 public support. FUNDING. MRC.

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“…People in our study were motivated to share their information if their security number and telephone number were not gathered (75.2%), which gives them a sense of security and privacy. The use of de-identified data for research purposes was a strong motive for participants in the United Kingdom health service [ 29 ]. Weitzman et al revealed that 90% of people enrolled in their study were willing to share their data for research if rigorous confidentiality measures were implemented [ 12 ].…”

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“…These have identified that there is typically a low understanding of research methods and the value linked records can bring; but, once individuals understood the purpose and potential benefits of using data in research, then this is typically supported on the condition that the research is intended to benefit the public good and that sufficient safeguards are in place [9][10][11][12]. However, there is a varying degree of trust placed in different organisations for the use of data in this way, and the type of organisation deemed most trustworthy is context specific [13,14]. Within longitudinal studies, Stockdale and colleagues' [15] systematic review on public attitudes towards the use of patient data identified a complexity of views and a low level of awareness regarding the secondary use of health and other records in research.…”