Australians' knowledge of general practice data sharing: findings from a focus group study and cross-sectional survey

Background and objective: Relatively little is known about public understanding of the secondary use of general practice data. We investigated what the Australian public knows about the secondary use of information in their general practice records.

Methods: The investigation used a mixed methods approach with four focus groups (n=22) and a cross-sectional survey that was weighted to be nationally representative (n=2604).

Results: Participants broadly understood what was in their general practice record. Most believed it was shared with hospital health professionals and other medical staff to support their care. Fewer than 30% thought their health information was shared with health administrators, planners and researchers, and fewer than half believed it was used for planning, to improve health services generally or for research.

Discussion: The secondary use of general practice data outside the clinical encounter is poorly understood by the public. More and better information about how, where and with whom general practice data are shared is needed.