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

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.

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

“…More than half of the included studies (40/75, 53%) did not describe or report the consent model used. Broad open consent was the most explored model (11/75, 15%) [44][45][46][47][48][49][50][51][52][53][54], followed by dynamic consent (8/75, 11%) [55][56][57][58][59][60][61][62], broad controlled consent (4/75, 5%) [63][64][65][66], broad tiered/meta/menu consent (3/75, 4%) [67][68][69], and general denial consent (2/75, 3%) [70,71].…”

A Blockchain-Based Consent Mechanism for Access to Fitness Data in the Healthcare Context

“…Another solution proposed by the Orange Consent Management Service records consent in the blockchain through a consent management server, which has been demonstrated in the Hyperledger beta version [41]. A related work proposed by Dovetail leverages a blockchain to allow patients to consent to the sharing of their electronic medical records (EMRs) with other entities through a mobile application [44]. Dovetail's blockchain stores consent along with reference to the transferred data.…”

Is blockchain ready for orthopaedics? A systematic review

“…From the point of view of study participants, blockchain technology also offers a flexible means by which patients can opt in and out of research. Patients have been shown to respond favourably to these blockchain based digital consent processes 35 and this may in turn promote greater public participation.…”