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Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis

  • Quita Olsen
  • , Amalie Dyda
  • , Leanna Woods
  • , Elton Lobo
  • , Rebekah Eden
  • , Michelle A. Krahe
  • , Bernadette Richards
  • , Nalini Pather
  • , Lesley McGee
  • , Clair Sullivan
  • , Jason D. Pole
  • University of Queensland
  • James Cook University Queensland

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)

Abstract

Healthcare delivery is under strain, and the reusing of routinely collected data promises improved outcomes. Still, concerns remain about the public’s willingness to share their health data. This study examines worldwide willingness to share health data for secondary purposes. Five electronic databases were searched for eligible studies published since January 2020. Articles were included if they quantitatively examined the primary outcome; the public’s willingness to share health data for secondary use, while secondary outcomes included demographic and perception measures associated with willingness to share. Sixty-five articles reported a wide range (24–100%) of public willingness to share resulting in a pooled estimate of 77% (95% CI: 71–82%) among predominantly high-income countries. Participants remain concerned about privacy, consent, and transparency. Future work should consider public education, assessing diverse populations and developing and deploying a validated tool measuring willingness to share data.

Original languageEnglish
Article number8 (10)
Pages (from-to)540
Number of pages553
Journalnpj Digital Medicine
Volume8
Issue number1
DOIs
Publication statusPublished - Dec 2025
Externally publishedYes

Bibliographical note

Publisher Copyright:
© The Author(s) 2025.

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