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Evaluation of patient perception towards dynamic health data sharing using blockchain based digital consent with the Dovetail digital consent application : a cross sectional exploratory study

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Despotou, George, Evans, Jill, Nash, William, Eavis, Alexandra, Robbins, Tim and Arvanitis, Theodoros N. (2020) Evaluation of patient perception towards dynamic health data sharing using blockchain based digital consent with the Dovetail digital consent application : a cross sectional exploratory study. Digital Health, 6 . doi:10.1177/2055207620924949

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Official URL: https://doi.org/10.1177/2055207620924949

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Abstract

Background
New patient-centric integrated care models are enabled by the capability to exchange the patient’s data amongst stakeholders, who each specialise in different aspects of the patient’s care. This requires a robust, trusted and flexible mechanism for patients to offer consent to share their data. Furthermore, new IT technologies make it easier to give patients more control over their data, including the right to revoke consent. These characteristics challenge the traditional paper-based, single-organisation-led consent process. The Dovetail digital consent application uses a mobile application and blockchain based infrastructure to offer this capability, as part of a pilot allowing patients to have their data shared amongst digital tools, empowering patients to manage their condition within an integrated care setting.

Objective
To evaluate patient perceptions towards existing consent processes, and the Dovetail blockchain based digital consent application as a means to manage data sharing in the context of diabetes care.

Method
Patients with diabetes at a General Practitioner practice were recruited. Data were collected using focus groups and questionnaires. Thematic analysis of the focus group transcripts and descriptive statistics of the questionnaires was performed.

Results
There was a lack of understanding of existing consent processes in place, and many patients did not have any recollection of having previously given consent. The digital consent application received favourable feedback, with patients recognising the value of the capability offered by the application. Patients overwhelmingly favoured the digital consent application over existing practice.

Conclusions
Digital consent was received favourably, with patients recognising that it addresses the main limitations of the current process. Feedback on potential improvements was received. Future work includes confirmation of results in a broader demographic sample and across multiple conditions.

Item Type: Journal Article
Subjects: Q Science > QA Mathematics > QA76 Electronic computers. Computer science. Computer software
Divisions: Faculty of Science > WMG (Formerly the Warwick Manufacturing Group)
SWORD Depositor: Library Publications Router
Library of Congress Subject Headings (LCSH): Blockchains (Databases), Medical records -- Data processing, Medical telematics -- Valuation, Medical informatics, Telecommunication in medicine
Journal or Publication Title: Digital Health
Publisher: SAGE Publications
ISSN: 2055-2076
Official Date: 1 January 2020
Dates:
DateEvent
1 January 2020Published
12 May 2020Available
16 April 2020Accepted
Volume: 6
DOI: 10.1177/2055207620924949
Status: Peer Reviewed
Publication Status: Published
Publisher Statement: ** Embargo end date: 12-05-2020 ** From SAGE Publishing via Jisc Publications Router ** History: received 09-10-2019; accepted 16-04-2020; epub 12-05-2020. ** Licence for this article starting on 12-05-2020: https://creativecommons.org/licenses/by-nc-nd/4.0/
Access rights to Published version: Restricted or Subscription Access
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
UNSPECIFIEDSmall Business Research InitiativeUNSPECIFIED
A-1296Academic Health Science NetworkUNSPECIFIED
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