Patients' knowledge, preferences, and perspectives about data protection and data control: an exploratory survey

Area of Science:

• Health Law and Policy
• Bioethics
• Data Privacy

Background:

• The General Data Protection Regulation (GDPR) governs personal data in the EU, impacting health research.
• Criticism exists regarding GDPR's challenges to research, with limited focus on patient perspectives.
• This study addresses the gap by examining patient awareness, rights exercise, and data control preferences.

Purpose of the Study:

• To assess patient, carer, and patient organization member awareness and knowledge of GDPR.
• To investigate patient experiences in exercising data subject rights.
• To understand patient views on data control and preferences for data control tools.

Main Methods:

• An online survey was conducted from December 2022 to March 2023.
• Quantitative data were analyzed using descriptive and inferential statistics.
• Qualitative data from open-ended questions were analyzed thematically.

Main Results:

• 220 participants from 28 European countries, mostly patients (77%), responded.
• 90% had heard of GDPR, but few exercised data subject rights.
• Individual data control tools were slightly preferred over collective ones; patient involvement increased data sharing willingness.

Conclusions:

• Enhanced data protection education is crucial for patients.
• While individual control is preferred, collective tools can mitigate risks.
• The European Health Data Space needs to balance individual control with research data reuse.