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Lookup NU author(s): Dr Philip HeslopORCiD, Dr Karen Davies, Professor Avan SayerORCiD, Professor Miles WithamORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
Background Routinely-collected electronic health and social-care data are now widely used for research as well as clinical practice. Current models of consent and governance are rooted in traditional research designs that collect data specifically for research purposes. Main arguments We argue that the current governance arrangements where processing of routinely-collected electronic health and social-care data is deemed ‘fair use’ may not be acceptable to the public in the future. Public expectations of how their data are used are changing, with individuals seeking more control. Finding a model of governance that maintains public trust and the engagement of individuals requires respect for the concept of ‘digital personhood’ – the idea that a person’s data form part of their self. This requires that, where suitable, we move to a model of ongoing consent, with two-way communication between individuals expressing preferences for use of their data, and researchers feeding back how an individual’s data are used. Whilst such a model was not practical until recently, current technological advances are removing these barriers. Such changes are needed to avoid loss of public trust in the research process and to avoid large-scale withdrawal of consent by the public to research use of routinely-collected electronic health and social-care data. Conclusion Moving to a model of ongoing consent to support the use of routinely-collected electronic health and social-care data for research is necessary to maintain trust and engagement by individuals who are increasingly concerned with the uses to which their data are put.
Author(s): Heslop P, Davies K, Sayer AA, Witham MD
Publication type: Article
Publication status: Published
Journal: BMJ Health & Care Informatics
Year: 2020
Volume: 27
Issue: 1
Online publication date: 02/07/2020
Acceptance date: 18/05/2020
Date deposited: 07/07/2020
ISSN (electronic): 2632-1009
Publisher: BMJ Publishing Group
URL: https://doi.org/10.1136/bmjhci-2020-100128
DOI: 10.1136/bmjhci-2020-100128
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