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首页> 外文期刊>BMC Medical Informatics and Decision Making >Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research
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Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research

机译：认真对待患者的参与：数据密集型医学研究中参与性方法的关键伦理分析

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Data-intensive research in medicine and healthcare such as health-related big data research (HBDR) implies that data from clinical routine, research and patient-reported data, but also non-medical social or demographic data, are aggregated and linked in order to optimize biomedical research. In this context, notions of patient participation and involvement are frequently invoked to legitimize this kind of research and improve its governance. The aim of this debate paper is to critically examine the specific use and ethical role of participatory concepts in the context of HBDR and data-intensive research in medicine and healthcare. We introduce basic conceptual distinctions for the understanding of participation by looking at relevant fields of application in politics, bioethics and medical research. Against this backdrop, we identify three paradigmatic participatory roles that patients/subjects are assigned within the field of HBDR: participants as providers of biomaterials and data, participants as administrators of their own research participation and participants as (co-)principal investigators. We further illustrate these roles by exemplary data-intensive research-initiatives. Our analysis of these initiatives and their respective participatory promises reveals specific ethical and practical shortcomings and challenges. Central problems affecting, amongst others, ethical and methodological research standards, as well as public trust in research, result from the negligence of essential political-ethical dimensions of genuine participation. Based on the conceptual distinctions introduced, we formulate basic criteria for justified appeals to participatory approaches in HBDR and data-intensive research in medicine and healthcare in order to overcome these shortcomings. As we suggest, this is not only a matter of conceptual clarity, but a crucial requirement for maintaining ethical standards and trust in HBDR and related medical research.
机译：医学和保健方面的数据密集型研究（例如与健康相关的大数据研究（HBDR））意味着来自临床常规，研究和患者报告数据的数据，以及非医学社会或人口统计数据，都经过汇总和链接，以便优化生物医学研究。在这种情况下，通常会引用患者参与和参与的概念来使这种研究合法化并改善其治理。这篇辩论论文的目的是严格审查参与式概念在HBDR和医学与卫生保健数据密集型研究的背景下的特殊用途和伦理作用。通过介绍在政治，生物伦理学和医学研究中的相关应用领域，我们介绍了基本的概念区别，以使人们对参与有一个了解。在此背景下，我们确定了HBDR领域中分配给患者/受试者的三种范式参与角色：参与者是生物材料和数据的提供者，参与者是他们自己的研究参与的管理者，参与者是（共同）主要研究人员。我们通过示例性的数据密集型研究计划进一步说明了这些角色。我们对这些举措及其各自的参与性承诺的分析揭示了特定的道德和实践缺陷与挑战。影响道德和方法研究标准以及公众对研究的信任等主要问题，是由于真正参与的基本政治伦理层面的疏忽所致。基于引入的概念差异，我们制定了针对HBDR参与式方法以及医学和卫生保健数据密集型研究的合理吸引力的基本标准，以克服这些缺点。正如我们建议的那样，这不仅是概念上的明确性问题，而且是维持道德标准和对HBDR和相关医学研究的信任的关键要求。

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