理查德·格雷(Richard Gray) (by Richard Gray)

Allowing health data to flow more freely between countries in Europe could aid the fight against coronavirus while also help the region be better prepared for future pandemics, but privacy and technical considerations need to be tackled sooner rather than later, say experts.

专家们说，让健康数据在欧洲各国之间更自由地流动可以帮助对抗冠状病毒，同时也可以帮助该地区为未来的大流行做好更好的准备，但是，隐私和技术方面的考虑需要尽早解决，而不是稍后解决。

In the midst of a global pandemic, sharing information might seem like a mundane and rather unimportant part of the response to the health crisis.

在全球大流行中，共享信息似乎对卫生危机的React是平凡的而不是不重要的部分。

But the willingness of national health agencies and researchers to exchange data across international borders is a crucial element in the fight against Covid-19.

但是，国家卫生机构和研究人员愿意跨越国际边界交换数据是对抗Covid-19的关键要素 。

The Sars-CoV-2 virus was entirely new to humankind when it burst into the world in December last year, meaning scientists knew very little about how it spreads, the disease it causes and, most importantly, how to treat it.

去年12月，Sars-CoV-2病毒对人类来说是全新的，这意味着科学家对其传播方式，引起的疾病以及最重要的治疗方法知之甚少。

But digital technology — combined with the will to cut through international red tape that normally restricts data sharing between countries — has meant discoveries about the virus can be quickly shared around the world.

但是，数字技术加上通常会限制国家之间数据共享的突破国际繁文tape节的意愿，意味着有关该病毒的发现可以在世界范围内快速共享 。

Sharing data has allowed scientists to exchange genetic sequences from the virus to track how it has spread, enabled doctors to quickly learn how to spot the symptoms of the disease, and given hospitals the ability to share the best ways of treating the virus. Pharmaceutical companies and researchers have also been able to use the information about the virus and patient immune responses to rapidly develop potential vaccines and drug treatments.

共享数据使科学家能够交换该病毒的遗传序列，以追踪其传播方式，使医生能够快速学习如何发现该疾病的症状，并使医院能够共享治疗该病毒的最佳方法。 制药公司和研究人员还能够使用有关病毒和患者免疫React的信息来快速开发潜在的疫苗和药物治疗方法。

‘We have seen with the Covid-19 pandemic just how successful sharing information can be in allowing collaboration across international borders,’ said Dr Niklas Blomberg, director of Elixir, an intergovernmental organisation that coordinates the sharing of data and expertise in the life sciences across Europe.

政府间组织Elixir的负责人尼古拉斯·布隆伯格(Niklas Blomberg)博士说：“我们已经看到Covid-19大流行使共享信息成功地实现了跨国界的合作。”欧洲。

Relationships

人际关系

Dr Blomberg says that relationships established as part of existing European research projects have meant some organisations were quickly able to adapt to sharing information about coronavirus. He and other experts believe, however, that greater sharing of health data between countries and organisations will be essential in the ongoing fight against Covid-19, as well as helping to spot future potential pandemics earlier.

布隆伯格博士说，作为现有欧洲研究项目的一部分建立的关系意味着一些组织很快就能适应共享冠状病毒的信息。 然而，他和其他专家认为，在持续对抗Covid-19的斗争中以及在尽早发现未来的潜在流行病中，国家和组织之间更好地共享健康数据至关重要。

Formal, structured ways of sharing data could help make better use of the enormous wealth of health data collected across the EU to tackle other existing public health problems, adds Professor Milan Petković, head of data science at the electronics firm Philips and vice president of the industry-led non-profit Big Data Value Association.

飞利浦电子公司电子科学部门数据科学负责人米兰·彼得科维奇教授补充说，形式化，结构化的数据共享方式可以帮助更好地利用整个欧盟收集的大量健康数据来解决其他现有的公共卫生问题。行业主导的非营利性大数据价值协会。

‘The creation of a common European health data space, in which health information is exchanged cross-border and which enables the participation of a vibrant ecosystem of stakeholders, should be a priority,’ said Prof. Petković, who also researches health data science at Eindhoven University of Technology in the Netherlands.

佩特科维奇教授说：“建立一个通用的欧洲健康数据空间是一个优先事项，在该空间中可以跨边界交换健康信息，并使利益相关者充满活力的生态系统参与其中。”荷兰埃因霍温科技大学。

‘This pandemic taught us some important lessons — first, about the importance and value of data sharing, and secondly that we still need to make further steps to improve.’

“这一大流行病给了我们一些重要的教训-首先，关于数据共享的重要性和价值，其次，我们仍然需要采取进一步的措施来进行改进。”

Sensitive

敏感

Sharing the kind of data that has been so important in the response to Covid-19 is not as simple as popping it into an email and hitting send. A lot of health data contains personal and sensitive details about patients. Other important information is tied up in red tape that makes it difficult to share, while a lot of data is gathered by local hospitals or health authorities but never shared beyond that.

共享对于响应Covid-19如此重要的数据类型，并不像将其弹出电子邮件并点击发送那样简单。 许多健康数据包含有关患者的个人和敏感详细信息。 其他重要信息被绑在繁文tape节上，使之难以共享，而许多数据是由当地医院或卫生部门收集的，但从未共享。

‘We need to unlock the value from data held by public sector bodies,’ said Prof. Petković, who pointed at the national portal to exchange Covid-19 patient data in the Netherlands that was set up by the Netherlands Ministry of Health in collaboration with Philips as a good example.

佩特科维奇教授说：“我们需要从公共部门机构持有的数据中释放价值，”佩特科维奇教授指出，该网站是荷兰卫生部与荷兰卫生部合作建立的在荷兰交换Covid-19患者数据的国家门户网站。飞利浦就是一个很好的例子。

Elixir and a number of other pan-European projects aimed at setting up data sharing networks across Europe could also provide examples for how to overcome some of these barriers.

Elixir和其他一些旨在在欧洲范围内建立数据共享网络的泛欧洲项目也可以提供如何克服这些障碍的示例。

‘We’ve been building this infrastructure primarily for the exchange of genomic sequencing data,’ said Dr Blomberg. ‘There are nodes in each country that deal with the national coordination of life sciences research data and in particular genomic sequencing data. Then Elixir runs the services that allow member countries to connect and exchange that data.’

布隆伯格博士说：“我们一直在建立这种基础设施，主要是为了交换基因组测序数据。” 各个国家/地区都有处理生命科学研究数据，尤其是基因组测序数据的全国协调的节点。 然后，Elixir运行允许成员国连接和交换数据的服务。

Standardisation

标准化

Part of that work has involved developing standards for how genomic data should be collected, compiled and shared. Much like the standardisation of mobile communication networks that allow mobile phones to work wherever they are in the world, science and health data also needs to be shared in formats that can be used wherever they are needed.

这项工作的一部分涉及制定有关如何收集，编译和共享基因组数据的标准。 就像允许移动电话在世界上任何地方工作的移动通信网络的标准化一样，科学和健康数据也需要以可以在任何地方使用的格式共享。

Projects like the 1+ Million Genomes initiative, which Elixir is involved in establishing standards for, are working on agreements that will enable large amounts of genetic and health data to be shared across the borders of European countries.

Elixir参与制定标准的“ 1+百万基因组计划”等项目正在制定协议，以使大量遗传和健康数据能够在欧洲国家的边界​​之间共享。

‘When the Covid-19 pandemic came along, we were able to use the foundations (Elixir) had put into place to sequence the genomes of both the virus and the patients,’ said Dr Blomberg. ‘It has been useful in helping to see how the virus is mutating and what determines why some people get sick and others don’t get nearly as sick.’

布朗姆伯格博士说：“当Covid-19大流行到来时， 我们就可以利用已经建立的基金会(Elixir)对病毒和患者的基因组进行测序。” 他说：“这有助于了解病毒如何突变，以及决定为什么某些人生病而另一些人得病的几率不大的原因。”

In April, the European Commission established a Covid-19 Data Platform to allow research data to be rapidly collected and widely shared, as part of their ERAvsCorona Action Plan, and have drawn up a manifesto to make Covid-19 research results accessible. Many other pan-European projects also pivoted to find ways of tackling the pandemic and countries with strong national infrastructures to coordinate data collection responded quickly. Dr Blomberg points to Spain, Germany, the UK, Sweden and other Nordic countries as having strong national coordination structures that allowed them to quickly share data on the virus.

作为其ERAvsCorona行动计划的一部分，欧洲委员会在4月建立了Covid-19数据平台，以允许快速收集和广泛共享研究数据，并草拟了一项宣言，以使Covid-19研究结果可访问。 许多其他泛欧洲项目也着力寻找解决这种流行病的方法，拥有强大国家基础设施以协调数据收集的国家也Swift做出了React。 布隆伯格博士指出，西班牙，德国，英国，瑞典和其他北欧国家具有强大的国家协调结构，可以使它们快速共享有关该病毒的数据。

‘Those countries that were not already connected in established projects are requiring a lot more effort when it comes to sharing data,’ said Dr Blomberg. ‘And we will face the same challenge in future disease outbreaks. We need to move from data sharing being something that is done in rapid response by the leading laboratories and institutions to being available to every research base in Europe.’

布隆伯格博士说：“那些尚未建立项目的国家在共享数据时需要付出更多的努力。” “而且在未来疾病暴发中，我们将面临同样的挑战。 我们需要从领先的实验室和机构Swift做出响应的数据共享转变为可用于欧洲的每个研究基地。

For that to happen, he believes that data sharing needs to be built into the fabric of all European research projects so that information is collected, stored and shared in standard ways that allow it to be shared openly.

为此，他认为，数据共享必须构建在所有欧洲研究项目的基础上，以便以允许公开共享的标准方式来收集，存储和共享信息。

‘We need to move from data sharing being something that is done in rapid response by the leading laboratories and institutions to being available to every research base in Europe.’

“我们需要从领先的实验室和机构Swift做出响应的数据共享转变为可用于欧洲的每个研究基地。”

- -Dr Niklas Blomberg, Director, Elixir

--Elixir董事Niklas Blomberg博士

Privacy

隐私

It also needs to be easier for individuals to let the data they generate be used for the public good, added Prof. Petković. ‘For instance, a system could be developed at EU level to allow citizens or patients to make their health data available, if they wish so, for research without reference to a particular research project,’ he said.

佩特科维奇教授补充说，个人也需要更轻松地将他们生成的数据用于公共利益。 他说：“例如，可以在欧盟一级开发一种系统，使公民或患者可以在不参考特定研究项目的情况下，将其健康数据提供给研究人员。”

But this also needs to happen in a way that can guarantee the privacy of patients whose data might be collected, and that citizens can trust.

但是，这还需要以一种可以保证可以收集其数据的患者的隐私并且公民可以信任的方式进行。

‘In order for healthcare systems and the health industry to deal with a huge block of data, we need to be thinking about privacy by design and security by design,’ said Anett Mádi-Nátor, a senior cyber defence expert at Hungarian cybersecurity consultancy Cyber Services and a member of the strategic committee of the European Cyber Security Organisation (ECSO).

匈牙利网络安全咨询公司Cyber​​的高级网络防御专家AnettMádi-Nátor说：“为了使医疗保健系统和医疗行业处理大量数据，我们需要考虑设计时的隐私和设计时的安全性。服务和欧洲网络安全组织(ECSO)战略委员会的成员。

‘Currently, most national healthcare systems are standing at point zero and patients don’t have much control over their own data. We need to take steps to ensure that private individuals’ health data is protected in a much more secure way.’

“目前，大多数国家医疗保健系统都处于零点，患者对自己的数据没有太多控制权。 我们需要采取措施，确保以更加安全的方式保护个人的健康数据。”

Part of this may be addressed by projects such as MyHealthMyData and SHiELD, which are attempting to develop ways for sensitive health data to be shared in a more secure way. Mádi-Nátor also sees a role for artificial intelligence in helping to label health care that contains personal information.

MyHealthMyData和SHiELD等项目可能会解决部分问题，这些项目正在尝试开发以更安全的方式共享敏感健康数据的方法。 Mádi-Nátor还看到了人工智能在帮助标记包含个人信息的医疗保健方面的作用。

‘It can mark personal and sensitive data so that it has to be handled with special care and stronger technical support from a cybersecurity perspective,’ she said. ‘Once these sorts of services are up and running we can start discussing these with the European public to build up trust that will be needed for health data to be handled in a much more clever and useful way.’

她说：“它可以标记个人和敏感数据，因此从网络安全的角度出发，必须格外小心并加强技术支持。” “一旦这类服务启动并运行，我们就可以开始与欧洲公众讨论这些服务，以建立信任，而这种信任将需要以更加聪明和有用的方式来处理健康数据。”

An important step along this journey was the creation of Europe’s General Data Protection Regulation (GDPR) rules, but the computer systems and databases used by most health services still need to be updated to ensure security is at the heart of their design.

在此过程中，重要的一步是创建了欧洲通用数据保护条例 (GDPR)规则，但是大多数医疗服务所使用的计算机系统和数据库仍需要更新，以确保安全性是其设计的核心。

‘Most state-owned and managed systems are legacy systems that have no inbuilt security,’ added Mádi-Nátor. ‘Replacing these is not going to happen in one night — it will be a very long process that could take 10–15 years as they are made more secure step by step.’

Mádi-Nátor补充说：“大多数国有和受管系统都是没有内置安全性的传统系统。” “取代这些不会在一夜之间发生-这将是一个非常漫长的过程，可能需要10到15年的时间，因为它们一步一步变得更加安全。”

With global pandemics expected to be more common in the future, global sharing of health data could help the world better respond. It could also contribute to tackling other health issues such as cancers and rare diseases by allowing more information to be shared between countries.

随着全球流感大流行在未来变得越来越普遍 ，全球共享健康数据可以帮助世界做出更好的React。 通过允许各国之间共享更多信息，它还可以有助于解决其他健康问题，例如癌症和罕见疾病。

‘Covid-19 has been a really important driver for the European data spaces,’ said Dr Blomberg. ‘But it could be leveraged further for other aspects of the health programme. It is a really important opportunity.’

布隆伯格博士说：“ Covid-19一直是欧洲数据空间的重要推动力。” ``但是可以将其进一步用于健康计划的其他方面。 这是一个非常重要的机会。

Niklas Blomberg, Milan Petković and Anett Mádi-Nátor will be speaking at a panel to discuss data for health at the European Research and Innovation Days conference which will take place online from 22–24 September.

Niklas Blomberg，MilanPetković和AnettMádi-Nátor将在 9月22日至24日在线 召开 的 欧洲研究与创新日会议上 ，就 健康数据进行讨论 。

更多信息 (More info)

MyHealthMyData

我的健康我的数据

SHiELD

屏蔽

Originally published at horizon-magazine.eu.

最初发布于 horizo​​n-magazine.eu 。