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Stakeholder perspectives on data sharing from pragmatic clinical trials: Unanticipated challenges for meeting emerging requirements.

Stephanie R MorainJuli BollingerKevin WeinfurtJeremy Sugarman
Published in: Learning health systems (2023)
Our data indicate unresolved tensions in how to fulfill the expectation to broadly share de-identified, individual-level data from PCTs, and suggest that those promulgating and implementing data-sharing policies must be sensitive to PCT-specific considerations. Future work could inform efforts to tailor data-sharing policy and practice to reflect the challenges presented by PCTs, including sharing experiences from trials that have successfully navigated these tensions.
Keyphrases
  • electronic health record
  • big data
  • clinical trial
  • social media
  • health information
  • healthcare
  • public health
  • primary care
  • machine learning
  • artificial intelligence
  • deep learning
  • open label
  • phase ii