The other side of the coin: Harm due to the non-use of health-related data
The other side of the coin: Harm due to the non-use of health-related data
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DOI：
10.1016/j.ijmedinf.2016.09.010
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发表时间：
2017-01-01
影响因子：
4.9
通讯作者：
Lea, Nathan
中科院分区：
文献类型：
--
作者：
Jones, Kerina H.;Laurie, Graeme;Lea, Nathan
导言：人们普遍认识到，违反和滥用与健康有关的数据可能产生严重影响，因此往往会受到惩罚。然而，由于不使用健康数据或不使用数据而造成的危害是一个缺乏重视的问题。在有效地解决这个问题之前，需要更好地理解“硬币的另一面”。方法：本文采用国际案例研究方法来探讨为什么不使用数据难以确定、不使用健康相关数据的来源和类型、其对公民和社会的影响以及发生这种情况的一些原因。它通过关注临床护理记录、研究数据和治理框架以及相关的不使用实例的问题来做到这一点。结果和讨论：不使用健康相关数据是一个复杂的问题，有多种解释。不使用数据的个别实例可能与伤害有关，但综合起来，它们可以描述一系列可能使其影响复杂化和复杂化的数据不使用。有充分的间接证据表明，不使用卫生数据与成千上万人的死亡有关，并可能给社会造成数十亿美元的财政负担。结论：不使用卫生数据造成的危害难以明确界定，实际证实的证据也很少。虽然它可能难以捉摸，但它仍然是一个具有广泛和严重后果的实际问题，其后果在很大程度上是无法量化的。解决不使用数据的具体情况的最有效举措将是：首先，了解特定领域中不使用数据的相关来源、类型和原因，以迎接挑战并创造适当的激励和反响；其次，我们认识到这个复杂问题在其他领域的多个方面，保持利益和局限性的观点，稳步朝着社会负责任的数据再利用成为规范，以节省生命和资源。(C) 2016年作者。爱思唯尔爱尔兰有限公司出版。
Introduction: It is widely acknowledged that breaches and misuses of health-related data can have serious implications and consequently they often carry penalties. However, harm due to the omission of health data usage, or data non-use, is a subject that lacks attention. A better understanding of this 'other side of the coin' is required before it can be addressed effectively.Approach: This article uses an international case study approach to explore why data non-use is difficult to ascertain, the sources and types of health-related data non-use, its implications for citizens and society and some of the reasons it occurs. It does this by focussing on issues with clinical care records, research data and governance frameworks and associated examples of non-use.Results and discussion: The non-use of health-related data is a complex issue with multiple explanations. Individual instances of data non-use can be associated with harm, but taken together, they can describe a trail of data non-use that may complicate and compound its impacts. There is ample indirect evidence that health data non-use is implicated in the deaths of many thousands of people and potentially billions in financial burdens to societies.Conclusions: Harm due to the non-use of health data is difficult to attribute unequivocally and actual proven evidence is sparse. Although it can be elusive, it is nevertheless a real problem with widespread and serious, if largely unquantifiable, consequences. The most effective initiatives to address specific contexts of data non-use will be those that: firstly, understand the pertinent sources, types and reasons for data non-use in a given domain in order to meet the challenges and create appropriate incentives and repercussions; and secondly, are cognisant of the multiple aspects to this complex issue in other domains to keep benefits and limitations in perspective, to move steadily towards socially responsible reuse of data becoming the norm to save lives and resources. (C) 2016 The Authors. Published by Elsevier Ireland Ltd.