Health Data Democratization in Austria: Patients' Perspective

Area of Science:

• Health Informatics
• Patient Engagement
• Data Governance

Background:

• Health data democratization is crucial for advancing medical research and clinical practice.
• Ensuring transparency, protection, and interoperability is essential for a trustworthy data-sharing environment.
• Understanding patient perspectives is vital for successful health data initiatives.

Purpose of the Study:

• To explore patient and stakeholder opinions on health data democratization in Austria.
• To investigate views on health data ownership and sharing among individuals with chronic diseases.
• To identify key requirements for facilitating health data sharing.

Main Methods:

• A co-creation workshop was conducted with patients suffering from chronic diseases.
• Relevant stakeholders were included in the co-creation process.
• Qualitative data on opinions regarding health data democratization, ownership, and sharing were gathered.

Main Results:

• Participants expressed a strong willingness to share their health data.
• Sharing willingness was contingent upon robust transparency and data protection measures.
• Key concerns revolved around data security and control.

Conclusions:

• Patient willingness to share health data is high when trust is established.
• Implementing strong data protection and transparency is paramount for health data democratization.
• Co-creation approaches effectively capture patient perspectives on data sharing.