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Generation of Comprehensive Thoracic Oncology Database - Tool for Translational Research
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Reimagining Patient Data Access for Researchers.

Stephen T Parente1, Charles E Phelps2

  • 1Department of Finance, Carlson School of Management, University of Minnesota, Minneapolis, MN, USA.

Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research
|July 5, 2023
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Summary
This summary is machine-generated.

Maximizing access to electronic health records (EHRs) for health economics and outcomes research (HEOR) requires new data systems. Public and private support is crucial for funding these systems while safeguarding patient privacy.

Keywords:
electronic health record data accesspatient data for researchpatient data protection

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Area of Science:

  • Health Economics and Outcomes Research (HEOR)
  • Health Data Management
  • Patient Privacy

Background:

  • The widespread adoption of electronic health records (EHRs) presents an opportunity to leverage comprehensive patient data beyond traditional claims data for HEOR studies.
  • Existing data infrastructure and intellectual property frameworks may not be optimized for maximizing researcher access to EHR data while ensuring robust patient privacy protections.

Purpose of the Study:

  • To explore organizational structures and intellectual property rights that facilitate greater researcher access to full EHR data for HEOR.
  • To identify strategies for protecting patient privacy rights within expanded EHR data utilization for research.
  • To analyze data protection requirements and financial incentives at patient, aggregator, and system levels.

Main Methods:

  • Comparative analysis of existing and proposed organizational structures and intellectual property rights for EHR data aggregation.
  • Evaluation of data protection requirements and financial incentives for patient participation and data aggregation.
  • Assessment of the role of trusted third parties (TTPs) and secondary data aggregators in creating usable HEOR databases.

Main Results:

  • New HEOR data systems necessitate novel organizational models and funding mechanisms, alongside stringent patient data privacy measures.
  • The Cures Act facilitates a market for TTPs to aggregate patient data, with secondary aggregators combining individual EHRs into valuable HEOR databases.
  • Full health insurance coverage for data transmission costs is essential for maximizing patient participation.

Conclusions:

  • Significant advancements are still needed to achieve maximal availability of HEOR data while upholding patient privacy.
  • HEOR data is a public good, indicating that private incentives alone are insufficient for system creation and operation.
  • Public and private investment is vital to scale the system and enhance its impact on public health.