Van Biesen Wim, Ponikvar Jadranka Buturovic, Fontana Monica, Heering Peter, Sever Mehmet S, Sawhney Simon, Luyckx Valerie
Department of Nephrology, University Hospital Gent, Gent, Belgium.
University Medical Centre Ljubljana, Division of Internal Medicine, Department of Nephrology, Ljubljana, Slovenia; Faculty of Medicine, University of Ljubljana, Slovenia.
Nephrol Dial Transplant. 2025 Feb 28;40(3):455-464. doi: 10.1093/ndt/gfae267.
In the current paper, we will focus on requirements to ensure big data can advance the outcomes of our patients suffering from kidney disease. The associated ethical question is whether and how we as a nephrology community can and should encourage the collection of big data of our patients. We identify some ethical reflections on the use of big data, and their importance and relevance. Furthermore, we balance advantages and pitfalls and discuss requirements to make legitimate and ethical use of big data possible. The collection, organization, and curation of data come upfront in the pipeline before any analyses. Great care must therefore be taken to ensure quality of the data at this stage, to avoid the 'garbage in garbage out' problem and suboptimal patient care as a consequence of such analyses. Access to the data should be organized so that correct and efficient use of data is possible. This means that data must be stored safely, so that only those entitled to do so can access them. At the same time, those who are entitled to access the data should be able to do so in an efficient way, so as not to hinder relevant research. Analysis of observational data is itself prone to many errors and biases. Each of these biases can finally result in provision of low-quality medical care. Secure platforms should therefore also ensure correct methodology is used to interpret the available data. This requires close collaboration of a skilled workforce of experts in medical research and data scientists. Only then will our patients be able to benefit fully from the potential of AI and big data.
在当前的论文中，我们将聚焦于确保大数据能够推动我们肾病患者治疗效果的相关要求。与之相关的伦理问题是，作为肾脏病学界，我们能否以及应该如何鼓励收集我们患者的大数据。我们确定了一些关于大数据使用的伦理思考，以及它们的重要性和相关性。此外，我们权衡了利弊，并讨论了使大数据的合法和伦理使用成为可能的要求。
在进行任何分析之前，数据的收集、组织和管理是流程中的首要环节。因此，在这个阶段必须格外小心，以确保数据的质量，避免出现“垃圾进，垃圾出”的问题，以及因这种分析导致的患者护理不佳。
应该对数据访问进行组织，以便能够正确、高效地使用数据。这意味着数据必须安全存储，只有有权限的人才能访问。同时，有权访问数据的人应该能够高效地访问，以免妨碍相关研究。
对观察性数据的分析本身就容易出现许多错误和偏差。这些偏差中的每一个最终都可能导致提供低质量的医疗护理。因此，安全的平台还应确保使用正确的方法来解释现有数据。这需要医学研究领域的专业人员和数据科学家密切合作。只有这样，我们的患者才能充分受益于人工智能和大数据的潜力。
