Insights From the Development of a Dynamic Consent Platform for the Australians Together Health Initiative (ATHENA) Program: Interview and Survey Study.

IF 2 Q3 HEALTH CARE SCIENCES & SERVICES JMIR Formative Research Pub Date : 2024-11-06 DOI:10.2196/57165
Eddy Xiong, Carissa Bonner, Amanda King, Zoltan Maxwell Bourne, Mark Morgan, Ximena Tolosa, Tony Stanton, Kim Greaves
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Abstract

Background: Dynamic consent has the potential to address many of the issues facing traditional paper-based or electronic consent, including enrolling informed and engaged participants in the decision-making process. The Australians Together Health Initiative (ATHENA) program aims to connect participants across Queensland, Australia, with new research opportunities. At its core is dynamic consent, an interactive and participant-centric digital platform that enables users to view ongoing research activities, update consent preferences, and have ongoing engagement with researchers.

Objective: This study aimed to describe the development of the ATHENA dynamic consent platform within the framework of the ATHENA program, including how the platform was designed, its utilization by participants, and the insights gained.

Methods: One-on-one interviews were undertaken with consumers, followed by a workshop with health care staff to gain insights into the dynamic consent concept. Five problem statements were developed, and solutions were posed, from which a dynamic consent platform was constructed, tested, and used for implementation in a clinical trial. Potential users were randomly recruited from a pre-existing pool of 615 participants in the ATHENA program. Feedback on user platform experience was gained from a survey hosted on the platform.

Results: In the 13 consumer interviews undertaken, participants were positive about dynamic consent, valuing privacy, ease of use, and adequate communication. Motivators for registration were feedback on data usage and its broader community benefits. Problem statements were security, trust and governance, ease of use, communication, control, and need for a scalable platform. Using the newly constructed dynamic consent platform, 99 potential participants were selected, of whom 67 (68%) were successfully recontacted. Of these, 59 (88%) agreed to be sent the platform, 44 (74%) logged on (indicating use), and 22 (57%) registered for the clinical trial. Survey feedback was favorable, with an average positive rating of 78% across all questions, reflecting satisfaction with the clarity, brevity, and flexibility of the platform. Barriers to implementation included technological and health literacy.

Conclusions: This study describes the successful development and testing of a dynamic consent platform that was well-accepted, with users recognizing its advantages over traditional methods of consent regarding flexibility, ease of communication, and participant satisfaction. This information may be useful to other researchers who plan to use dynamic consent in health care research.

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为澳大利亚人共同健康倡议(ATHENA)计划开发动态同意平台的启示:访谈与调查研究。
背景:动态同意书有可能解决传统纸质或电子同意书所面临的许多问题,包括在决策过程中招募知情和参与的参与者。澳大利亚人共同健康倡议(ATHENA)计划旨在将澳大利亚昆士兰州的参与者与新的研究机会联系起来。其核心是动态同意,这是一个以参与者为中心的互动式数字平台,使用户能够查看正在进行的研究活动、更新同意偏好,并与研究人员持续互动:本研究旨在描述在 ATHENA 计划框架内开发 ATHENA 动态同意平台的过程,包括平台的设计方式、参与者对平台的使用情况以及获得的启示:方法:先对消费者进行一对一访谈,然后与医护人员召开研讨会,深入了解动态同意概念。在此基础上构建、测试了动态同意平台,并将其用于临床试验。潜在用户是从 ATHENA 计划的 615 名参与者中随机招募的。通过在平台上进行调查,获得用户对平台体验的反馈:在进行的 13 次消费者访谈中,参与者对动态同意、重视隐私、易用性和充分沟通持肯定态度。注册的动机是对数据使用的反馈及其更广泛的社区利益。问题陈述包括安全性、信任和管理、易用性、沟通、控制以及对可扩展平台的需求。利用新构建的动态同意平台,选出了 99 名潜在参与者,其中 67 人(68%)成功地与他们取得了联系。其中,59 人(88%)同意发送平台,44 人(74%)登录(表示使用),22 人(57%)注册了临床试验。调查反馈良好,所有问题的平均好评率为 78%,反映出对平台的清晰度、简洁性和灵活性的满意度。实施障碍包括技术和健康知识:本研究介绍了动态同意书平台的成功开发和测试,该平台得到了广泛认可,用户认识到其在灵活性、沟通便利性和参与者满意度方面比传统同意书方法更具优势。这些信息可能对其他计划在医疗保健研究中使用动态同意的研究人员有用。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
JMIR Formative Research
JMIR Formative Research Medicine-Medicine (miscellaneous)
CiteScore
2.70
自引率
9.10%
发文量
579
审稿时长
12 weeks
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