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.

專家們說，讓健康數據在歐洲各國之間更自由地流動可以幫助對抗冠狀病毒，同時也可以幫助該地區為未來的大流行做好更好的準備，但是，隱私和技術方面的考慮需要盡早解決，而不是稍后解決。

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，共享信息似乎對衛生危機的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，國家衛生機構和研究人員愿意跨越國際邊界交換數據是對抗Covid-19的關鍵要素 。

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病毒對人類來說是全新的，這意味著科學家對其傳播方式，引起的疾病以及最重要的治療方法知之甚少。

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，數字技術加上通常會限制國家之間數據共享的突破國際繁文tape節的意愿，意味著有關該病毒的發現可以在世界范圍內快速共享 。

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.

共享數據使科學家能夠交換該病毒的遺傳序列，以追蹤其傳播方式，使醫生能夠快速學習如何發現該疾病的癥狀，并使醫院能夠共享治療該病毒的最佳方法。 制藥公司和研究人員還能夠使用有關病毒和患者免疫React的信息來快速開發潛在的疫苗和藥物治療方法。

‘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.

政府間組織Elixir的負責人尼古拉斯·布隆伯格(Niklas Blomberg)博士說：“我們已經看到Covid-19大流行使共享信息成功地實現了跨國界的合作。”歐洲。

Relationships

人際關系

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.

布隆伯格博士說，作為現有歐洲研究項目的一部分建立的關系意味著一些組織很快就能適應共享冠狀病毒的信息。 然而，他和其他專家認為，在持續對抗Covid-19的斗爭中以及在盡早發現未來的潛在流行病中，國家和組織之間更好地共享健康數據至關重要。

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 Petkovi?, head of data science at the electronics firm Philips and vice president of the industry-led non-profit Big Data Value Association.

飛利浦電子公司電子科學部門數據科學負責人米蘭·彼得科維奇教授補充說，形式化，結構化的數據共享方式可以幫助更好地利用整個歐盟收集的大量健康數據來解決其他現有的公共衛生問題。行業主導的非營利性大數據價值協會。

‘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. Petkovi?, who also researches health data science at Eindhoven University of Technology in the Netherlands.

佩特科維奇教授說：“建立一個通用的歐洲健康數據空間是一個優先事項，在該空間中可以跨邊界交換健康信息，并使利益相關者充滿活力的生態系統參與其中。”荷蘭埃因霍溫科技大學。

‘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.’

“這一大流行病給了我們一些重要的教訓-首先，關于數據共享的重要性和價值，其次，我們仍然需要采取進一步的措施來進行改進。”

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.

共享對于響應Covid-19如此重要的數據類型，并不像將其彈出電子郵件并點擊發送那樣簡單。 許多健康數據包含有關患者的個人和敏感詳細信息。 其他重要信息被綁在繁文tape節上，使之難以共享，而許多數據是由當地醫院或衛生部門收集的，但從未共享。

‘We need to unlock the value from data held by public sector bodies,’ said Prof. Petkovi?, 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.

佩特科維奇教授說：“我們需要從公共部門機構持有的數據中釋放價值，”佩特科維奇教授指出，該網站是荷蘭衛生部與荷蘭衛生部合作建立的在荷蘭交換Covid-19患者數據的國家門戶網站。飛利浦就是一個很好的例子。

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和其他一些旨在在歐洲范圍內建立數據共享網絡的泛歐洲項目也可以提供如何克服這些障礙的示例。

‘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.’

布隆伯格博士說：“我們一直在建立這種基礎設施，主要是為了交換基因組測序數據。” 各個國家/地區都有處理生命科學研究數據，尤其是基因組測序數據的全國協調的節點。 然后，Elixir運行允許成員國連接和交換數據的服務。

Standardisation

標準化

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.

這項工作的一部分涉及制定有關如何收集，編譯和共享基因組數據的標準。 就像允許移動電話在世界上任何地方工作的移動通信網絡的標準化一樣，科學和健康數據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參與制定標準的“ 1+百萬基因組計劃”等項目正在制定協議，以使大量遺傳和健康數據能夠在歐洲國家的邊界??之間共享。

‘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.’

布朗姆伯格博士說：“當Covid-19大流行到來時， 我們就可以利用已經建立的基金會(Elixir)對病毒和患者的基因組進行測序。” 他說：“這有助于了解病毒如何突變，以及決定為什么某些人生病而另一些人得病的幾率不大的原因。”

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.

作為其ERAvsCorona行動計劃的一部分，歐洲委員會在4月建立了Covid-19數據平臺，以允許快速收集和廣泛共享研究數據，并草擬了一項宣言，以使Covid-19研究結果可訪問。 許多其他泛歐洲項目也著力尋找解決這種流行病的方法，擁有強大國家基礎設施以協調數據收集的國家也Swift做出了React。 布隆伯格博士指出，西班牙，德國，英國，瑞典和其他北歐國家具有強大的國家協調結構，可以使它們快速共享有關該病毒的數據。

‘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.’

布隆伯格博士說：“那些尚未建立項目的國家在共享數據時需要付出更多的努力。” “而且在未來疾病暴發中，我們將面臨同樣的挑戰。 我們需要從領先的實驗室和機構Swift做出響應的數據共享轉變為可用于歐洲的每個研究基地。

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.

為此，他認為，數據共享必須構建在所有歐洲研究項目的基礎上，以便以允許公開共享的標準方式來收集，存儲和共享信息。

‘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.’

“我們需要從領先的實驗室和機構Swift做出響應的數據共享轉變為可用于歐洲的每個研究基地。”

- -Dr Niklas Blomberg, Director, Elixir

--Elixir董事Niklas Blomberg博士

Privacy

隱私

It also needs to be easier for individuals to let the data they generate be used for the public good, added Prof. Petkovi?. ‘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.

佩特科維奇教授補充說，個人也需要更輕松地將他們生成的數據用于公共利益。 他說：“例如，可以在歐盟一級開發一種系統，使公民或患者可以在不參考特定研究項目的情況下，將其健康數據提供給研究人員。”

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，這還需要以一種可以保證可以收集其數據的患者的隱私并且公民可以信任的方式進行。

‘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).

匈牙利網絡安全咨詢公司Cyber??的高級網絡防御專家AnettMádi-Nátor說：“為了使醫療保健系統和醫療行業處理大量數據，我們需要考慮設計時的隱私和設計時的安全性。服務和歐洲網絡安全組織(ECSO)戰略委員會的成員。

‘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，大多數國家醫療保健系統都處于零點，患者對自己的數據沒有太多控制權。 我們需要采取措施，確保以更加安全的方式保護個人的健康數據。”

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等項目可能會解決部分問題，這些項目正在嘗試開發以更安全的方式共享敏感健康數據的方法。 Mádi-Nátor還看到了人工智能在幫助標記包含個人信息的醫療保健方面的作用。

‘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.’

她說：“它可以標記個人和敏感數據，因此從網絡安全的角度出發，必須格外小心并加強技術支持。” “一旦這類服務啟動并運行，我們就可以開始與歐洲公眾討論這些服務，以建立信任，而這種信任將需要以更加聰明和有用的方式來處理健康數據。”

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.

在此過程中，重要的一步是創建了歐洲通用數據保護條例 (GDPR)規則，但是大多數醫療服務所使用的計算機系統和數據庫仍需要更新，以確保安全性是其設計的核心。

‘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補充說：“大多數國有和受管系統都是沒有內置安全性的傳統系統。” “取代這些不會在一夜之間發生-這將是一個非常漫長的過程，可能需要10到15年的時間，因為它們一步一步變得更加安全。”

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.

隨著全球流感大流行在未來變得越來越普遍 ，全球共享健康數據可以幫助世界做出更好的React。 通過允許各國之間共享更多信息，它還可以有助于解決其他健康問題，例如癌癥和罕見疾病。

‘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.’

布隆伯格博士說：“ Covid-19一直是歐洲數據空間的重要推動力。” ``但是可以將其進一步用于健康計劃的其他方面。 這是一個非常重要的機會。

Niklas Blomberg, Milan Petkovi? 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，MilanPetkovi?和AnettMádi-Nátor將在 9月22日至24日在線 召開 的 歐洲研究與創新日會議上 ，就 健康數據進行討論 。

更多信息 (More info)

MyHealthMyData

我的健康我的數據

SHiELD

屏蔽

Originally published at horizon-magazine.eu.

最初發布于 horizo??n-magazine.eu 。

翻譯自: https://medium.com/horizon-magazine/coronavirus-accelerates-drive-to-share-health-data-across-borders-e5d8f67fd57b

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