Despotou George, Evans Jill, Nash William, Eavis Alexandra, Robbins Tim, Arvanitis Theodoros N
Institute of Digital Healthcare, WMG, University of Warwick, UK.
Dovetail Digital Ltd, London, UK.
Digit Health. 2020 May 12;6:2055207620924949. doi: 10.1177/2055207620924949. eCollection 2020 Jan-Dec.
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.
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.
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.
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.
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.
以患者为中心的新型综合护理模式，是通过在各专门负责患者护理不同方面的利益相关者之间交换患者数据的能力来实现的。这需要一种强大、可靠且灵活的机制，以便患者能够同意分享其数据。此外，新的信息技术使患者更容易对自己的数据拥有更多控制权，包括撤销同意的权利。这些特性对传统的纸质、单一组织主导的同意流程构成了挑战。燕尾数字同意应用程序使用移动应用程序和基于区块链的基础设施来提供这种能力，作为一项试点的一部分，允许患者在数字工具之间共享其数据，使患者能够在综合护理环境中管理自己的病情。
评估患者对现有同意流程的看法，以及基于燕尾区块链的数字同意应用程序作为在糖尿病护理背景下管理数据共享的一种手段的看法。
招募了一家全科医生诊所的糖尿病患者。使用焦点小组和问卷调查收集数据。对焦点小组记录进行主题分析，并对问卷进行描述性统计。
患者对现有的同意流程缺乏了解，许多患者不记得之前曾给予同意。数字同意应用程序获得了积极反馈，患者认可该应用程序所提供功能的价值。绝大多数患者更喜欢数字同意应用程序而非现有做法。
数字同意受到了好评，患者认识到它解决了当前流程的主要局限性。收到了关于潜在改进的反馈。未来的工作包括在更广泛的人口样本和多种病症中确认结果。
