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

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.