Patients, the public and the uses of big data; practical engagement, education, scrutiny and leadership

现有卫生数据的类型和范围正在迅速增长，将这些不同来源联系起来并用于产生新的见解和理解的方法也在迅速增长。因此，大数据和分析改善生活的潜力也呈指数级增长。但是，在这种潜力不断增长的同时，关于数据的合法性、合法性以及对数据的处理方式、处理方式和控制方式的理解也面临着越来越多的挑战。媒体对大数据的兴趣也越来越浓厚。媒体倾向于关注健康数据的风险，其报道主要基于数据和使用增加所带来的负面影响，如风险、威胁、利用、黑客攻击、盗窃和损失。然而，媒体上的这些主要是负面信息是针对公众的，而健康数据是关于患者的。这与以下观点形成鲜明对比，特别是患者的观点，即需要同样充分地论证存在重大益处，以便患者和公众能够就使用卫生数据造福个人和社会作出知情和平衡的选择。目前，对患者和公众的意见进行量化的工作很少，这对LIDA开展的所有工作构成了重大风险。这就是护理的例证。数据崩溃：在没有充分的公众咨询和了解数据应该如何使用和不应该如何使用的意见的情况下，公众对使用健康记录感到严重不安，导致卫生数据研究严重冻结。尽管数据现在在研究系统内更容易移动，但担忧仍然存在，公众对其数据如何被使用的担忧可能再次阻碍大数据健康研究的风险越来越大。随着计划从2018年3月开始实施国家数据选择退出计划，以及2018年5月通过《通用数据保护条例》（GDPR），这些担忧可能会增加。我的工作计划将通过研究公众对“大数据”使用的看法来寻求纠正这种平衡。然后，我将利用所产生的证据，为一个消息灵通、连贯但独立的，我将建立的由患者和公众代表组成的知情独立机构将直接参与指导和监督LIDA投资组合内的研究，并寻求减轻公众关注可能给大数据分析带来的任何风险。这项奖学金将使我能够扩展和巩固我在利兹大学已经开展的工作。例如，我已经领导了一项工作，寻求将患者置于英国结直肠癌情报中心项目的中心（由340万英镑资助，我是该项目的共同研究员）。该中心涉及创建和利用所有与结直肠癌相关的英国数据的大型存储库。考虑到这一人群的数据量和范围，我们认为，绝对重要的是，有患病风险或被诊断出患有这种疾病的个人处于核心位置。

The types and extent of health data that exist are growing rapidly, as are the methods via which these disparate sources can be linked and used to generate new insights and understanding. As a result, the potential of big data and analytics to improve lives is also increasing exponentially. But alongside this growing potential there are also growing challenges around the legality, legitimacy and understanding of what is done with the data, how it is done, and how it is controlled. There is also an ever-increasing interest in the media about big data. The media tend to focus on the risks of health data, with stories which are largely based on the negative aspects which increased data and usage brings, such as risks, threat, exploitation, hacking, theft and loss. However, these largely negative messages in the media are targeted at the public, whereas health data is about patients. This contrasts strongly with the views, particularly of patients, that there are significant benefits which need to be equally well argued, so that patients and the public can make informed, balanced choices about the uses of health data for individual and societal benefit.Currently little work has been undertaken to quantify the views of patients and the public and this poses a major risk to all work undertaken in LIDA. This is exemplified by the care.data debacle where major public disquiet about the use of health records without adequate public consultation and understanding of views on how data should, and should not, be used led to a significant freeze in health data research. Although data are now moving more readily within the research system, concerns remain and there is a growing risk that public fear about how their data are used may again halt big data health research. These concerns are likely to increase with the planned implementation of the National Data Opt-Out scheme from March 2018 and the adoption of the General Data Protection Regulation (GDPR) in May 2018.My programme of work will seek to redress this balance by undertaking research into public views on the use of 'big data'. I will then use the evidence generated to inform the development of a well-informed and coherent, but independent, patient voice that will oversee all work undertaken in LIDA spanning the priority areas of Health Data Research UK The informed and independent body of patient and public representatives that I will develop will then have direct involvement in steering and overseeing research within the LIDA portfolio and seek to mitigate any risks that public concern may bring to the big data analytics.This Fellowship would allow me to extend and build on the work I am already undertaking at the University of Leeds. For example, I am already leading work seeking to put patients at the centre of the UK Colorectal Cancer Intelligence Hub programme (funded by a £3.4 million grant on which I am a Co-Investigator). This Hub involves the creation and exploitation of a large repository of all the UK data relevant to colorectal cancer. Given the volume and scope of the data held on this population we believe it is absolutely fundamental that individuals either at risk of, or diagnosed with the illness are at its heart.