Wilson James, Herron Daniel, Nachev Parashkev, McNally Nick, Williams Bryan, Rees Geraint
Department of Philosophy, University College London, London, United Kingdom.
Research & Development, UCL Hospitals/UCL Biomedical Research Centre, London, United Kingdom.
J Med Internet Res. 2020 Mar 27;22(3):e15816. doi: 10.2196/15816.
Research and innovation in biomedicine and health care increasingly depend on electronic data. The emergence of data-driven technologies and associated digital transformations has focused attention on the value of such data. Despite the broad consensus of the value of health data, there is less consensus on the basis for that value; thus, the nature and extent of health data value remain unclear. Much of the existing literature presupposes that the value of data is to be understood primarily in financial terms, and assumes that a single financial value can be assigned. We here argue that the value of a dataset is instead relational; that is, the value depends on who wants to use it and for what purposes. Moreover, data are valued for both nonfinancial and financial reasons. Thus, it may be more accurate to discuss the values (plural) of a dataset rather than the singular value. This plurality of values opens up an important set of questions about how health data should be valued for the purposes of public policy. We argue that public value models provide a useful approach in this regard. According to public value theory, public value is created, or captured, to the extent that public sector institutions further their democratically established goals, and their impact on improving the lives of citizens. This article outlines how adopting such an approach might be operationalized within existing health care systems such as the English National Health Service, with particular focus on actionable conclusions.
生物医学与医疗保健领域的研究与创新越来越依赖电子数据。数据驱动技术的出现及相关数字变革使人们将注意力集中在这类数据的价值上。尽管对于健康数据的价值已达成广泛共识，但对于该价值的依据却较少有一致看法；因此，健康数据价值的本质和程度仍不明确。现有文献大多预先假定数据价值主要应从财务角度来理解，并假定可以赋予单一的财务价值。我们在此认为，数据集的价值具有关联性；也就是说，价值取决于谁想使用它以及出于何种目的。此外，数据因其非财务和财务原因而具有价值。因此，讨论数据集的多种价值（复数形式）而非单一价值可能更为准确。这种价值的多元性引发了一系列关于如何为公共政策目的评估健康数据的重要问题。我们认为，公共价值模型在这方面提供了一种有用的方法。根据公共价值理论，公共价值在公共部门机构推进其民主确立的目标以及对改善公民生活产生影响的程度上得以创造或获取。本文概述了在诸如英国国家医疗服务体系这样的现有医疗保健系统中如何实施这种方法，尤其侧重于可付诸行动的结论。
