NHS data: Maximising its impact on the health and wealth of the United Kingdom

Ghafur, Saira; Fontana, Gabriela; Halligan, John; O'Shaughnessy, J; Darzi, Azam Fazli

doi:10.25561/76409

Cited by 4 publications

(7 citation statements)

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“…Data that have undergone suitable SDC (e.g., aggregation) can be published, and are therefore suitable for industrial access if desired. Regardless, as our participants commented, the NHS might charge for such access, 11 91 and full transparency is essential. Formal, consultation-based standards governing this NHS–commercial interface would be desirable.…”

Section: Discussionmentioning

confidence: 99%

“…UK law prohibits variation of policy according to these factors. 68 Better understanding and public information may be required to address these groups’ concerns, 11 69 but improvements in health equity are also required. 17 56 However, the effect sizes of these demographic predictors were not large enough to override the net support for data sharing, given the right destinations.…”

Section: Discussionmentioning

confidence: 99%

“…Some have suggested this is addressable in part by public education. 11 We suggest respecting public preference, and not giving commercial organisations direct access to patient-level NHS data for research, even de-identified, without consent. (This is distinct from the common NHS practice of employing companies, such as EHR software providers, to manage NHS data securely for clinical purposes.)…”

Section: Discussionmentioning

confidence: 99%

“…Governance of UK health data must be transparent and reflect the views of patients. 11 16 Regardless of legal authority, it is important that health data are processed in ways that have a ‘social licence’. 92 As the UK Government seeks to change data legislation 93 and emphasise health data in its science strategy, 94 we hope this study contributes to the conversation.…”

Section: Discussionmentioning

confidence: 99%

“… 11 Information is sometimes not shared clinically when it should be, 3 12 and patients may be surprised and frustrated by failures to share in a ‘national’ health service. 13 14 Previous work, while establishing themes in public views on data linkage and sharing for research, 11 15–21 has highlighted the very small scale of many studies, and the paucity of research about the views of minority groups and the acceptability of sharing some types of data, such as mental health (MH) data. Mental illnesses can carry significant stigma 22 but are associated with substantial loss of life expectancy, 23 necessitating improvements in research and care.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

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

et al. 2022

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

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

et al. 2022

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Adoption of artificial intelligence in breast imaging: evaluation, ethical constraints and limitations

2021

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Retrospective studies have shown artificial intelligence (AI) algorithms can match as well as enhance radiologist’s performance in breast screening. These tools can facilitate tasks not feasible by humans such as the automatic triage of patients and prediction of treatment outcomes. Breast imaging faces growing pressure with the exponential growth in imaging requests and a predicted reduced workforce to provide reports. Solutions to alleviate these pressures are being sought with an increasing interest in the adoption of AI to improve workflow efficiency as well as patient outcomes. Vast quantities of data are needed to test and monitor AI algorithms before and after their incorporation into healthcare systems. Availability of data is currently limited, although strategies are being devised to harness the data that already exists within healthcare institutions. Challenges that underpin the realisation of AI into everyday breast imaging cannot be underestimated and the provision of guidance from national agencies to tackle these challenges, taking into account views from a societal, industrial and healthcare prospective is essential. This review provides background on the evaluation and use of AI in breast imaging in addition to exploring key ethical, technical, legal and regulatory challenges that have been identified so far.

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Leveraging real-world data to improve cochlear implant outcomes: Is the data available?

Findlay

Edwards

Hough

et al. 2023

Cochlear Implants International

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NHS data: Maximising its impact on the health and wealth of the United Kingdom

Cited by 4 publications

References 0 publications

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

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

Adoption of artificial intelligence in breast imaging: evaluation, ethical constraints and limitations

Leveraging real-world data to improve cochlear implant outcomes: Is the data available?

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