Towards best practice recommendations: Perspectives from Australian GPs to inform the use of general practice data for research - A modified Delphi study

迈向最佳实践建议:澳大利亚全科医生的视角,为全科医疗数据在研究中的应用提供信息——一项改进的德尔菲研究

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Abstract

BACKGROUND: General practice medical records offer significant potential for secondary use in research, policy and public health. In Australia, these data remain underused due to concerns around privacy, governance and ethical use. Understanding the perspectives of GPs is essential to developing best practice recommendations for responsible data use. METHOD: A three-round modified Delphi study was conducted with 22 Australian GPs with experience in research and/or data sharing. Participants rated and commented on 11 recommendations derived from community juries, with consensus defined as ≥75% agreement. Feedback summaries and thematic analysis informed subsequent rounds. RESULTS: Consensus was reached on 10 of 11 recommendations. The panel supported ethical approval, transparency, protection of the doctor-patient relationship and remuneration for practices contributing data. An opt-out approach to consent was endorsed under strict conditions, with clear distinctions made between vulnerable and non-vulnerable populations. The panel also supported the establishment of a governance body and researcher cybersecurity training. However, no consensus was reached on community involvement in research design, despite its growing recognition as best practice by funding bodies. CONCLUSION: This study highlights the need for a nationally agreed remuneration model for general practices that contribute data, clearer ethical guidance for engaging vulnerable populations and reform of statutory frameworks to support responsible data use. The lack of consensus on community involvement is concerning, especially as initiatives such as the Australian Institute of Health and Welfare (AIHW) and Primary Health Networks (PHN) partnership advance national data standards. Bridging this gap is essential to align professional practice with public expectations and ensure inclusive, ethically robust research.

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