Insights From the Development of a Dynamic Consent Platform for the Australians Together Health Initiative (ATHENA)...

Area of Science:

• Health Informatics
• Clinical Trial Management
• Participant Engagement

Background:

• Dynamic consent offers an interactive alternative to traditional paper-based or electronic consent methods.
• It empowers participants by enabling informed decision-making and ongoing engagement with research.
• The Australians Together Health Initiative (ATHENA) program utilizes dynamic consent to connect participants with research opportunities.

Purpose of the Study:

• To describe the development of the ATHENA dynamic consent platform.
• To evaluate the platform's design, participant utilization, and user insights.
• To assess the platform's effectiveness within the ATHENA program framework.

Main Methods:

• Consumer interviews and a healthcare staff workshop informed the platform's design.
• Problem statements regarding security, trust, usability, and communication were addressed.
• The platform was constructed, tested, and implemented in a clinical trial with user feedback collected via survey.

Main Results:

• Consumer interviews revealed positive perceptions of dynamic consent, emphasizing privacy, usability, and communication.
• The ATHENA dynamic consent platform achieved significant user engagement, with 74% logging on and 57% registering for a clinical trial.
• Survey feedback indicated high user satisfaction (78% average positive rating) with the platform's clarity, brevity, and flexibility.

Conclusions:

• The ATHENA dynamic consent platform was successfully developed and tested, showing user acceptance and advantages over traditional consent.
• Users appreciated the flexibility, improved communication, and enhanced satisfaction offered by the dynamic consent approach.
• Findings provide valuable insights for researchers planning to implement dynamic consent in health care research.