"I Just Assumed This Was Already Being Done": Canadian Patient Preferences for Enhanced Data Sharing for Precision Oncology.
Samantha PollardMorgan EhmanAnna HermansenDeirdre WeymannEmanuel KrebsCheryl HoHoward J LimSteven J M JonesYvonne BombardTimothy P HannaChiquita HesselsHolly LongstaffRobert M Cook-DeeganTania BubelaDeirdre WeymannPublished in: JCO precision oncology (2024)
Strategies for secured data sharing should anticipate and mitigate the risks that patients perceive. Participants supported enhancing timely research capability while ensuring safeguards to protect patient autonomy and privacy. Our study informs the development of data-governance and data-sharing frameworks that integrate real-world and trial data, informed by evidence from direct patient input.