International Journal of Population Data Science (Jun 2020)

Why the public need a say in how patient data are Used for Covid-19 Responses

  • Mhairi Aitken,
  • Sarah Cunningham-Burley,
  • Amy Darlington,
  • Stephen Elstub,
  • Oliver Escobar,
  • Kerina Jones,
  • Nayha Sethi,
  • Rachel Thompson

DOI
https://doi.org/10.23889/ijpds.v5i2.1357
Journal volume & issue
Vol. 5, no. 2

Abstract

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The global coronavirus pandemic has clearly demonstrated the great urgency to collect and use patient data effectively to understand, track and manage the spread of Covid-19. The value of patient data in this pandemic is undeniable, however considerations around how - and by whom - such data should be collected, accessed and used, and for what purposes, remain to be fully debated and resolved. Who decides, and how such decisions are made remain unclear. We argue that public engagement and deliberation are essential for good governance and are key to establish and maintain a legitimate social licence for data practices around Covid-19.

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