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Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.

Anja KöngeterChristoph SchickhardtMartin JungkunzSusanne BergboldKatja MehlisEva C Winkler
Published in: Journal of medical Internet research (2022)
Although patients' general willingness to make their clinical data available for biomedical research purposes is very high, the willingness of a substantial proportion of patients depends on additional requirements. Taking these perspectives into account is essential for designing trustworthy governance of clinical data reuse and sharing. The willingness to accept the loss of control over clinical data to enhance the benefits of research should be given special consideration.
Keyphrases
  • newly diagnosed
  • prognostic factors
  • electronic health record
  • healthcare
  • big data
  • patient reported outcomes
  • cross sectional
  • patient reported
  • artificial intelligence
  • data analysis