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Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research

Williams, Hawys, Spencer, Karen, Sanders, Caroline, Lund, David, Whitley, Edgar A., Kaye, Jane and Dixon, William G. (2015) Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research. JMIR Medical Informatics, 3 (1). e3. ISSN 2291-9694

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Identification Number: 10.2196/medinform.3525

Abstract

With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England’s care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.

Item Type: Article
Official URL: http://medinform.jmir.org/
Additional Information: © 2015 The Authors © CC BY 2.0
Divisions: LSE
Subjects: H Social Sciences > HD Industries. Land use. Labor > HD28 Management. Industrial Management
Sets: Research centres and groups > Information Systems and Innovation Group
Date Deposited: 16 Jan 2015 10:39
Last Modified: 26 Jun 2019 23:06
Projects: EP/G002541/1, 096599/2/11/Z, G0902272, 20380
Funders: Technology Strategy Board, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Wellcome Trust Award, MRC Clinician Scientist Fellowship, Arthritis Research UK Center for Epidemiology, Arthritis Research United Kingdom
URI: http://eprints.lse.ac.uk/id/eprint/60754

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