Patient-led data sharing for clinical bioinformatics research: USCDI and beyond

Area of Science:

• Health Informatics
• Bioinformatics
• Health Policy

Background:

• The 21st Century Cures Act (2016) mandates improved patient access to electronic health information.
• The US Core Data for Interoperability (USCDI) standardizes data elements for health information exchange.
• Enhanced data liquidity is expected to create new value in healthcare.

Purpose of the Study:

• To examine the potential value creation from USCDI data for clinical bioinformatics research.
• To advocate for research community engagement in the USCDI process.
• To propose a pragmatic mechanism for enabling data export using existing APIs.

Main Methods:

• Commentary and analysis of the 21st Century Cures Act and its implications.
• Review of the US Core Data for Interoperability (USCDI) expansion process.
• Discussion of potential value creation in clinical bioinformatics.
• Proposal of an API-based data export mechanism.

Main Results:

• USCDI expansion holds significant potential for value creation in clinical bioinformatics.
• Active research community involvement can accelerate this value realization.
• Existing APIs can be leveraged for full data export with minimal technical overhead.

Conclusions:

• Engaging the research community in USCDI development is crucial for maximizing its value.
• Leveraging existing APIs for data export offers a practical approach to enhancing data liquidity.
• The 21st Century Cures Act and USCDI provide a framework for advancing clinical bioinformatics through improved data access.