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Placing conditions on sharing general practice data for research: Recommendations from two community juries.

Annette Joy Braunack-Mayer1, Heidi Green1, Lucy Carolan1

  • 1Australian Centre for Health Engagement, Evidence and Values, University of Wollongong, NSW, Australia.

International Journal of Population Data Science
|November 5, 2025
PubMed
Summary

Informed Australians support sharing general practice data for research. Public acceptance hinges on strict conditions regarding consent, data security, and public benefit, requiring policy and legislative changes.

Keywords:
community juryconsentdata linkagedeliberationgeneral practicegeneral practice dataprivacy

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Area of Science:

  • Health Services Research
  • Public Health Policy
  • Bioethics

Background:

  • Growing demand for secondary use of general practice health records for research.
  • Uncertainty regarding public support for using patient data for research.
  • Need to understand public perspectives on conditions for data sharing.

Purpose of the Study:

  • To explore informed Australians' views on acceptable conditions for using general practice data in research.
  • To gauge public willingness to share health records for secondary purposes.

Main Methods:

  • Two community juries conducted with 20 diverse participants each.
  • 36-hour deliberative process over 6 days, combining online and face-to-face sessions.
  • Participants engaged with experts, discussed, and formulated recommendations.

Main Results:

  • Both juries supported sharing general practice data for research in principle.
  • Juries developed 24 (Sydney) and 19 (Melbourne) recommendations covering consent, information, public benefit, security, governance, and costs.
  • Key themes included the necessity of strict conditions for data sharing.

Conclusions:

  • Informed Australian citizens are willing to share general practice data for research.
  • Acceptance is contingent upon meeting stringent criteria related to data handling and oversight.
  • Implementation requires significant policy and regulatory adjustments, including legislative reform.