High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology—Implications for Real-World Data Platform Governance: Cross-Sectional Study - Summary - MDSpire
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High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology—Implications for Real-World Data Platform Governance: Cross-Sectional Study
To assess the feasibility and acceptance of collecting and reusing patient-generated real-world data (RWD) within the pan-European Data Nexus platform (DNP) among patients with inflammatory rheumatic diseases (IRDs).
Key Findings:
The study aimed to evaluate patient willingness to grant broad consent for secondary data use.
Broad consent is essential for the governance and scalability of emerging European data initiatives.
Patient consent is critical for maintaining trust in healthcare and research.
Interpretation:
The findings highlight the importance of understanding patient perspectives on data sharing and consent, particularly in the context of evolving data governance frameworks.
Limitations:
The study's findings may not be generalizable beyond the specific patient population at the tertiary rheumatology center.
Limited empirical evidence exists on patients' willingness to share health data, particularly among those with IRDs.
Conclusion:
The study provides insights into patient readiness for broad consent, which is crucial for the future of real-world evidence generation and data-driven research infrastructures.
by Jutta G Richter, Antonia Becker, Tim Filla, Hasan Acar, Waldemar Ockert, Dominykas Kriauciunas, Edith Aggarwal, Markus Schröder, Ralf Hansen, Jörg HW Distler, Matthias Schneider
