Patient preferences toward an interactive e-consent application for research using electronic health records

Area of Science:

• Health Informatics
• Bioethics
• Patient Engagement

Background:

• Electronic health records (EHRs) are increasingly used in research.
• Broad consent for EHR data use is a complex ethical and logistical challenge.
• Patient perspectives are crucial for developing effective consent processes.

Purpose of the Study:

• To evaluate patient perceptions of using interactive electronic consent (e-consent) applications.
• To understand patient preferences and concerns regarding broad consent for EHR data research.

Main Methods:

• Qualitative study involving 42 think-aloud interviews with 32 adult participants.
• Analysis of interview transcripts using a modified grounded theory approach.

Main Results:

• Identified patient preferences, reservations, and varied attitudes toward electronic consent.
• Observed differences in information-seeking behaviors (low vs. high).
• Highlighted the importance of reassurance regarding data protection and restrictions on data sharing.

Conclusions:

• Interactive e-consent applications hold potential for customizable patient consent experiences.
• Patients express concerns about e-consent platforms and seek detailed information on data safeguards and administrative processes.
• E-consent design should prioritize meeting patient information needs for EHR research consent.