Data custodians and the decision-making process

releasing data for research

Carolyn Adams, Judy Allen, Felicity Flack

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

The empirical research presented in this article was prompted by concerns expressed by researchers about the decision-making processes of government data custodians. Data custodians are responsible for the collection, use and disclosure of vast collections of personal information, including the release of data from these collections for research. Researchers were concerned that the decision-making processes were time-consuming, complex and not transparent. The authors sought the views of data custodians in response, exploring the issues from the other side of the data divide. The majority of the 13 data custodians interviewed for this project were located in government sector agencies and their decision-making process was thus highly regulated and constrained by principles of administrative law. They did, however, have many thoughtful suggestions for change to improve the experience for all the stakeholders involved in the process of seeking and granting access to government-held data collections for research.
Original languageEnglish
Pages (from-to)433-453
Number of pages21
JournalJournal of Law and Medicine
Volume26
Issue number2
Publication statusPublished - 2018

Keywords

  • data linkage
  • data linkage research
  • data custodians
  • administrative decision-making
  • access to data
  • government-held data
  • privacy
  • data sharing
  • administrative data
  • Population Health Research Network

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