Patient data ownership: who owns your health?

Kathleen Liddell*, David A. Simon, Anneke Lucassen

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

Abstract

This article answers two questions from the perspective of United Kingdom law and policy: (i) is health information property? and (ii) should it be? We argue that special features of health information make it unsuitable for conferral of property rights without an extensive system of data-specific rules, like those that govern intellectual property. Additionally, we argue that even if an extensive set of rules were developed, the advantages of a property framework to govern health information would be slight: propertization is unlikely to enhance patient self-determination, increase market efficiency, provide patients a foothold in the data economy, clarify legal uses of information, or encourage data-driven innovation. The better approach is to rely less, not more, on property. We recommend a regulatory model with four signature features: (i) substantial protection for personal health data similar to the GDPR with transparent limits on how, when, and by whom patient data can be accessed, used, and transmitted; (ii) input from relevant stakeholders; (iii) interoperability; and (iv) greater research into a health-data service, rather than goods, model.
Original languageEnglish
Article numberlsab023
Peer-reviewed scientific journalJournal of Law and Biosciences
Volume8
Issue number2
Number of pages50
ISSN2053-9711
DOIs
Publication statusPublished - 01.10.2021
MoE publication typeA1 Journal article - refereed

Keywords

  • 513 Law
  • property
  • ownership
  • health
  • information and data
  • consent
  • digital health

Areas of Strength and Areas of High Potential (AoS and AoHP)

  • AoHP: Digitisation and sustainability in intellectual property

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