Toggle Main Menu Toggle Search

Open Access padlockePrints

Making consent for electronic health and social care data research fit for purpose in the 21st century

Lookup NU author(s): Dr Philip Heslop, Dr Karen Davies, Professor Avan Sayer, Professor Miles Witham

Downloads


Licence

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


Abstract

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.


Publication metadata

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


Altmetrics

Altmetrics provided by Altmetric


Actions

Find at Newcastle University icon    Link to this publication


Share