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Perceptions of Patient-Reported Outcome Data Access and Sharing among Patients with Heart Failure: Ethical Implications for Research.

Sabrina MangalStephanie Niño de RiveraMeghan ReadingAnnie MyersNatalie C BendaParag GoyalLydia DugdaleRuth Masterson Creber
Published in: European journal of cardiovascular nursing (2023)
Our interviews with HF patients highlight opportunities for researchers to return and share data through an ethical lens, by ensuring privacy and transparency with intentions of data use, returning collected data in comprehensible formats, and meeting individual expectations for data sharing.
Keyphrases
  • electronic health record
  • big data
  • patient reported outcomes
  • health information
  • machine learning
  • decision making
  • data analysis
  • acute heart failure