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Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions

Bharti, N; O'Donovan, C; Smallman, M; Wilson, J; (2021) Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions. Engaging Science, Technology and Society , 7 (1) pp. 125-133. 10.17351/ests2021.1197. Green open access

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Abstract

In England, a new scheme for collating and sharing General Practitioners’ data has faced resistance from various quarters and has been deferred twice. While insufficient communication and ambiguous safeguards explain the widespread dissatisfaction expressed by the public and experts, we argue how dwindling public trust can be the most damaging variable in this picture - with implications not only for this scheme, but for any future project that aims to mobilise health data for medical research and innovation. We also highlight the indispensability of deliberative public engagement on the values being prioritised in health data initiatives, the significance of securing social license in addition to legal assurances, and the lessons in it of global pertinence.

Type: Article
Title: Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions
Open access status: An open access version is available from UCL Discovery
DOI: 10.17351/ests2021.1197
Publisher version: https://doi.org/10.17351/ests2021.1197
Language: English
Additional information: © 2021 Nishtha Bharti, James Wilson, Melanie Smallman, Cian O'Donovan. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Keywords: trust, health data, public engagement, Nahtional Health Service, NHS, GPDPR
UCL classification: UCL
UCL > Provost and Vice Provost Offices > UCL BEAMS
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences > Dept of Science and Technology Studies
UCL > Provost and Vice Provost Offices > UCL SLASH
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of Arts and Humanities
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of Arts and Humanities > Dept of Philosophy
URI: https://discovery.ucl.ac.uk/id/eprint/10136048
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