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Time to really share real-world data?

Sophie Graham1, Laura McDonald2, Radek Wasiak1

  • 1Real-World Evidence, Evidera, London, W6 8DL, UK.

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Summary

Sharing real-world data (RWD) is crucial for healthcare decisions and resource allocation. Open science principles should extend to RWD, mirroring clinical trial data accessibility, to improve patient care and healthcare efficiency.

Keywords:
clinical datareal-world datasharing

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Area of Science:

  • Health Services Research
  • Data Science
  • Health Policy

Background:

  • Real-world data (RWD) is vital for healthcare decision-making beyond clinical trials.
  • Current efforts to share RWD lag behind those for clinical trial data.
  • Numerous global RWD sources remain underutilized due to lack of data sharing.

Purpose of the Study:

  • To advocate for increased open access and sharing of real-world data.
  • To highlight the potential of shared RWD for improving healthcare.
  • To emphasize the need for open science standards for RWD.

Main Methods:

  • This study is a policy and data science perspective piece.
  • It analyzes the current landscape of RWD accessibility.
  • It discusses policy and privacy considerations for data sharing.

Main Results:

  • Limited initiatives exist for sharing RWD compared to clinical trial data.
  • Shared RWD offers significant potential for enhancing patient care.
  • Effective resource utilization in healthcare can be improved through RWD sharing.

Conclusions:

  • Open science standards must be applied to RWD, similar to clinical trials.
  • Addressing policy and privacy concerns is necessary for RWD sharing.
  • Widespread RWD sharing can lead to substantial improvements in healthcare outcomes and resource management.