Accepted for/Published in: JMIR Formative Research
Date Submitted: Feb 6, 2024
Date Accepted: Jul 14, 2024
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Insights from the Development of a Dynamic Consent Platform for the ATHENA Program
ABSTRACT
Background:
Dynamic Consent (DC) resolves many of the issues facing traditional paper-based or electronic consent including providing truly 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 the DC platform, an interactive and participant centric digital platform enabling users to view ongoing research activities, update consent preferences, and receive real-time feedback on research outcomes.
Objective:
To describe the development process, construction, features, and testing of the ATHENA DC platform.
Methods:
One-on-one interviews were undertaken with consumers followed by a workshop with key stakeholders to gain insights on the DC concept. Five problem statements were developed and solutions posed, from which a DC platform was constructed, tested, and used to recruit to a clinical trial. Feedback on user platform experience was gained from a survey hosted on the platform.
Results:
Participants were positive about DC, 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 DC platform, 99 participants were recontacted, of whom 59 logged on indicating use, and 22 registered for the clinical trial. Survey feedback was positive, reflecting satisfaction with clarity, brevity, and flexibility of the platform. Key barriers to implementation include technological and health literacy.
Conclusions:
This study outlines the successful development and testing of a DC platform which was well-accepted, with users recognising its advantages over traditional methods of consent regarding flexibility, ease of communication, and participant satisfaction. This information may be useful to others who plan to use DC in healthcare research. Clinical Trial: NA
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