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Considerations for the Design of Informed Consent in Digital Health Research: Participant Perspectives
Brian J McInnis1, Ramona Pindus1, Daniah Kareem1
1Herbert Wertheim School of Public Health and Human Longevity Science, University of California San Diego, La Jolla, CA, USA.
Journal of Empirical Research on Human Research Ethics : JERHRE
|October 14, 2024
Summary
Participants want clearer information and better connection with research teams for informed consent, especially in digital health studies. Understanding technology and data handling is crucial for trust and engagement.
Area of Science:
- Digital Health
- Informed Consent Process
- Human-Centered Design
Background:
- Informed consent is critical for research integrity.
- Digital health research presents unique challenges to traditional informed consent.
- Participant engagement and understanding are key to successful research.
Purpose of the Study:
- To explore participant perspectives on informed consent in digital health research.
- To identify participant preferences for receiving study information.
- To gather ideas for alternative informed consent approaches.
Main Methods:
- Exploratory research using a human-centered design process.
- Conducted four online focus groups with 19 participants.
- Qualitative data analysis to identify themes and sub-themes.
Main Results:
- Six major themes and sixteen sub-themes were identified.
- Participants desire accessible study information and connection with research teams.
- Key concerns include understanding digital health technologies and data management (collection, storage, sharing).
Conclusions:
- Participant preferences and concerns must be addressed for effective informed consent in digital health.
- Human-centered approaches can improve understanding and trust in digital health research.
- Clear communication about technology and data handling is essential for prospective participants.
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