A national data infrastructure for patient-centered outcomes research

Area of Science:

• Health Services Research
• Health Informatics
• Public Health Policy

Background:

• Patient-centered outcomes research (PCOR) is crucial for improving healthcare decision-making.
• The Patient-Centered Outcomes Research Trust Fund, established by the Patient Protection and Affordable Care Act, supports PCOR initiatives.
• Effective data infrastructure is essential for the advancement and efficiency of PCOR.

Purpose of the Study:

• To describe national data infrastructure efforts supporting PCOR.
• To highlight the potential of national data infrastructure to reduce research costs and improve throughput.
• To discuss lessons learned from early and current efforts and identify remaining challenges.

Main Methods:

• Review of national data infrastructure initiatives in PCOR.
• Analysis of historical and ongoing projects demonstrating infrastructure potential.
• Identification of strategies for utilizing past lessons in current national efforts.

Main Results:

• National data infrastructure efforts show potential for cost reduction and increased research efficiency in PCOR.
• Early and current initiatives provide a foundation for a robust national data infrastructure.
• Lessons learned from predecessor efforts are being integrated into current national strategies.

Conclusions:

• Continued development of national data infrastructure is vital for advancing PCOR.
• Addressing identified challenges is necessary to fully realize the potential of data infrastructure in healthcare research.
• Leveraging past experiences is key to building effective and sustainable national data infrastructure for PCOR.