Returning study results to research participants: Data access, format, and sharing preferences

Area of Science:

• Health Informatics
• Patient Engagement
• Research Ethics

Background:

• Growing participant demand for transparency in data handling.
• Lack of clear guidelines for researchers on returning health information to participants.
• Understanding participant preferences for receiving and sharing research data is crucial.

Purpose of the Study:

• To investigate participant preferences for receiving and sharing health information collected during research.
• To identify preferred formats for data return and explore demographic variations in these preferences.

Main Methods:

• Cross-sectional online survey of 502 representative US participants.
• Assessed preferences for receiving, sharing, and formatting of research health data.
• Analyzed data based on sociodemographic characteristics, numeracy, and health literacy.

Main Results:

• 84% of participants desired their health information returned for personal knowledge and health management.
• Email (67%), online websites (44%), and paper copies (32%) were the most preferred formats.
• Significant variations in format preferences observed across age groups (e.g., mobile app preference by younger generations), education levels, and health literacy.

Conclusions:

• Returning research data to participants in multiple formats (email, web, paper) is supported.
• Sharing preferences vary; researchers should offer tailored data sharing options.
• Further research needed to understand how individual characteristics influence data sharing and format preferences.