Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK

Abstract

ObjectivesUK 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/outcomesPre-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.ParticipantsOpen to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition.ResultsMost (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.ConclusionsSupport 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 numberISRCTN37444142.

Views on sharing mental health data for research purposes: A qualitative study with people with mental illness

“…They expressed fear of being “excluded from reasonably priced insurance” , worries about “employer discrimination” and even losing child custody. Concern about commercial use of personal health data is strongly reflected in the wider literature on public attitudes to data sharing (Fylan & Fylan, 2021; Howe et al, 2018; Jones et al, 2022; Trinidad et al, 2010).…”

“…Nevertheless, it is important that policy decisions acknowledge the broad range of views surrounding the topic of consent. One suggestion proposed by Jones et al (2022) would be to manage NHS health data on an opt-out basis, with participants given the option to opt-out on the basis of whether the data would be used for clinical or research purposes, and whether or not it would be potentially identifiable.…”

“…Previous work on this topic has found relatively high levels of public support for health data sharing (73 - 93% positive; Buckley et al, 2011; King et al, 2012; Kirkham et al, 2022; Luchenski et al, 2013). However, this support is somewhat conditional, such that individuals typically want their data to be handled by an organisation they trust and used for the public good rather than for profit (Aitken et al, 2016; Jones et al, 2022). Research also suggests that people’s views vary according to the perceived sensitivity of the data, with mental health data cited as an example of sensitive health data (Grant et al, 2013; Robling et al, 2004).…”

“…The small amount of prior research which has focused on the preferences of people with mental illness found that factors which influence willingness to share health data include their prior experiences with health care services (Kirkham et al, 2022; Shen, Bernier, et al, 2019; Soni et al, 2021), stigma and the perceived risk of discrimination (Grando et al, 2017), and, similar to the wider general public, their trust in the organisation accessing the data (Caine & Hanania, 2013). There is also early evidence to suggest that people with mental illness may actually be more willing than those without to share their health data for research purposes (Jones et al, 2022), at least once other factors such as lower overall satisfaction with healthcare have been accounted for (Kirkham et al, 2022). However, this finding is not universal (Soni et al, 2020).…”

De-identified Bayesian personal identity matching for record linkage despite errors: development and validation

“…We expressed IMD as a deprivation centile, from 0 = least deprived in England (IMD#32844) to 100 = most deprived (IMD#1) (33), calculating the centile of IMD sequence numbers, i.e. not correcting for population; compare (34).…”