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

Abstract

Abstract Background There is an increasing demand for access to general practice health records for secondary purposes, including for quality assurance, evaluation, health service planning and research. Public support generally for the secondary use of routinely collected health data is well documented, but little is known specifically about public understanding of the secondary use of general practice data. In this study we investigate what the Australian public knows about the secondary use of the information in their general practice records. Methods A mixed methods approach with 4 focus groups (n=22) followed by a cross-sectional survey, weighted to be nationally representative (n=2,604). Results Participants broadly understood what information was in their general practice record. Most participants believed the information was shared with hospital health professionals and other medical staff to support their care. Less than 30% thought their health information was being shared with health administrators, planners and researchers, and less than half believed their information was used to improve health services generally or for research. A substantial number, though a minority, did not know what happened with their information. Conclusion Trust between publics and governments is essential for health care systems to operate and transparency is central. Securing legitimacy for sharing general practice data will require careful attention to patient and public understanding of data sharing practices. While this must involve providing more and better information for patients, equally there must be attention to the means through which that information is provided.