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Opening a "Can of Worms" to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study.

Olivia LounsburyLily F RobertsJonathan R GoodmanPhilippa BateyLenny NaarKelsey Margaret FlottAnna Lawrence-JonesSaira GhafurAra DarziAna Luísa Neves
Published in: Journal of medical Internet research (2021)
This study sheds new light on the main hopes and fears of the public regarding health care data sharing. Importantly, our results highlight novel concerns from the public, particularly in terms of the impact on health disparities, both at international and local levels, and on delivering patient-centered care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use.
Keyphrases
  • healthcare
  • health information
  • electronic health record
  • big data
  • social media
  • mental health
  • affordable care act
  • emergency department
  • public health
  • risk assessment