Sharing general practice data: a qualitative study with Australian general practitioners.

IF 2.9 Q2 MEDICINE, GENERAL & INTERNAL
Heidi Green, Justin Beilby, Carolyn Adams, Alberto Nettel-Aguirre, Felicity Flack, Anthony Brown, Allison Clarke, Christian Jung, Belinda Fabrianesi, Lucy Carolan, Annette Braunack-Mayer
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引用次数: 0

Abstract

Background: The increasing demand for access to general practice data for research and policy development presents ethical challenges for Australian general practitioners (GPs), particularly around patient consent, privacy, and trust. As frontline custodians of patient information, GPs must navigate the tension between supporting public benefit and upholding their professional obligations to confidentiality and autonomy.

Methods: This qualitative study involved interviews with 19 Australian GPs who reported limited experience with secondary use of general practice data. Participants were recruited via professional networks and interviewed using open-ended questions informed by prior community jury recommendations. Thematic analysis was conducted using NVivo 12, with an ethical lens applied to identify key themes related to trust, consent, and data governance.

Results: GPs expressed broad support for using general practice data in research but emphasised the centrality of trust in the doctor-patient relationship. Most participants preferred an opt-in consent model, citing transparency and respect for patient autonomy. Concerns were raised about privacy breaches, re-identification risks, and the ethical implications of remuneration. Organisational constraints, such as time pressures and limited decision-making authority within practices, were identified as barriers to implementing ethical data-sharing practices.

Conclusion: Australian GPs are pivotal in shaping ethical and effective models for data sharing in general practice. However, substantial policy, educational, and ethical work is needed to address their concerns. Building trust, ensuring transparency, and respecting patient autonomy are essential to securing GP support for routine data collection. A collaborative approach involving government, community, and general practice stakeholders is necessary to develop acceptable and sustainable data-sharing frameworks.

共享全科医生数据:澳大利亚全科医生的定性研究。
背景:为研究和政策制定而获取全科医生数据的需求日益增长,这对澳大利亚全科医生(gp)提出了伦理挑战,特别是在患者同意、隐私和信任方面。作为患者信息的一线保管人,全科医生必须在支持公共利益和维护其保密和自主的专业义务之间找到平衡。方法:本定性研究包括采访19名澳大利亚全科医生,他们报告了有限的全科数据二次使用经验。参与者通过专业网络招募,并根据之前社区陪审团的建议使用开放式问题进行访谈。使用NVivo 12进行主题分析,采用道德视角确定与信任、同意和数据治理相关的关键主题。结果:全科医生表示广泛支持在研究中使用全科医生的数据,但强调信任在医患关系中的中心地位。大多数参与者更喜欢选择加入的同意模式,理由是透明度和尊重病人的自主权。人们对隐私泄露、重新识别风险以及薪酬的道德影响表示担忧。组织约束,如时间压力和实践中的有限决策权,被认为是实施道德数据共享实践的障碍。结论:澳大利亚全科医生在塑造全科实践中数据共享的道德和有效模型方面至关重要。然而,需要大量的政策、教育和伦理工作来解决他们的担忧。建立信任、确保透明度和尊重患者自主权对于确保全科医生支持常规数据收集至关重要。制定可接受和可持续的数据共享框架需要政府、社区和全科医疗利益攸关方的协作方法。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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CiteScore
4.40
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