Using provocative design to foster electronic informed consent innovation.

Area of Science:

• Clinical Research Technology
• Human-Computer Interaction
• Patient Engagement

Background:

• The use of technological applications like electronic informed consent (eIC) is increasing in clinical research.
• End-user involvement in the design of eIC is crucial for enhancing the informed consent process.

Purpose of the Study:

• To explore clinical research participants' views and concerns regarding electronic informed consent (eIC) systems.
• To inform the design of eIC by understanding user preferences and trust factors.

Main Methods:

• Interviews were conducted with 30 clinical research participants using provocative design and 'provotypes'.
• Thematic analysis was performed using NVivo to analyze participant feedback on eIC aspects.
• Provocative design aimed to encourage divergent thinking and elicit detailed participant insights.

Main Results:

• Participants generally trust principal investigators and hospitals to host eIC systems.
• Willingness exists to share personal data internationally and receive research requests via eIC.
• Participants desire personalized eIC systems, control over data sharing, contact methods, and information preferences.

Conclusions:

• A research through design approach yielded valuable insights for eIC development.
• Provocative design, despite some limitations, generated additional user-centered insights for eIC.
• Participant trust and motivation to advance research influenced perceptions of provocative design scenarios.