ScholarOne - Considerations for the design of informed consent in
digital health research: Participant perspectives
- Brian McInnis,
- Ramona Pindus,
- Daniah Kareem,
- Camille Nebeker
Abstract
The research team, prospective participants, and written materials all
influence the success of the informed consent process. As digital health
research becomes more prevalent, new challenges for successful informed
consent are introduced. This exploratory research utilized a human
centered design process where 19 people were enrolled to participate in
one of 4 online focus-groups. Participants discussed their experiences
with informed consent, preferences for receiving study information and
ideas about alternative consent approaches. Data were analyzed using
qualitative methods. Six major themes and sixteen sub-themes were
identified that included study information that prospective participants
would like to receive, preferences for accessing information and a
desire to connect with research team members. Specific to digital
health, participants expressed a need to understand how the technologies
worked and how the volume of granular personal information would be
collected, stored, and shared.02 Jan 2024Submitted to Advance 01 Apr 2024Published in Advance