Sharing linked data for health research: toward better decision making

Carolyn Adams, Judy Allen, Felicity Flack

Research output: Book/ReportBookpeer-review

Abstract

The future of health research around the world relies on access to data. Much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections contain data on whole populations and are, therefore, a powerful tool in the hands of researchers, especially when the data collections are linked and analysed. Research using linked data has the capacity to address “wicked’ health problems and emerging global threats to health, such as COVID-19. These data collections are made up of sensitive information about the members of the community. They must only be used in a way that respects the values, interests, and rights of individuals and the community. This book provides a template for allowing access to government data collections for research in a regulatory environment that respects and protects these values, interests, and rights to build the social licence needed to support the research enterprise.
Original languageEnglish
Place of PublicationCambridge, UK
PublisherCambridge University Press (CUP)
Number of pages273
ISBN (Print)9781108426640
Publication statusPublished - 2022

Publication series

NameCambridge Bioethics and Law
PublisherCambridge University Press

Keywords

  • data linkage
  • data integration
  • record linkage
  • governance
  • decision-making
  • social licence
  • human rights
  • ethics
  • privacy
  • autonomy

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