Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey

Area of Science:

• Digital health
• Precision medicine
• Health data repositories

Background:

• Digital health research repositories aim to share health records and personal sensing data for precision medicine.
• Public acceptance and data contributor numbers are critical but challenging for these initiatives.

Purpose of the Study:

• Investigate public attitudes towards contributing to digital health research repositories.
• Identify factors influencing acceptance and inform future repository development.

Main Methods:

• Cross-sectional online survey conducted in Denmark and Brazil (March-December 2020).
• Examined willingness to share data, access preferences, concerns, and motivations.
• Analyzed demographic factors, health interest, prior research participation, and repository awareness.

Main Results:

• High motivation to help patients and researchers, but significant concerns regarding unethical projects, profit-making, and cyberattacks.
• Willingness to share personal sensing data (e.g., call/text content) is lower than traditional health information.
• Favorable attitudes correlate with health interest, prior research participation, and repository awareness.

Conclusions:

• Transparency in research goals and data beneficiaries is crucial for repository acceptance.
• Empowering participants with data access control and raising awareness of data sharing benefits are key.
• Future developments must address concerns and reduce risks for unwilling participants.