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#EAPM - Conference, Digital Day 3, and the rights of patients

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So, EAPM’s presidency conference is over for another year - and the 7th edition was, like its predecessors, a great success, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

And now, totally unlike Brexit, we move on with something constructive under all our belts…

At least something else very definitely constructive took place on the same day as the Alliance event, namely the European Commission’s third edition of its Digital Day initiative. More of that later…

Meanwhile, fresh from the EAPM conference, today (10 April) the Alliance’s Executive Director Denis Horgan spoke in a session for European Patients’ Rights Day in the Brussels seat of the European Parliament.

The event was entitled ‘Delivering patient value throughout the healthcare system.Focus on Digital Health and Personalised Medicine’ and Horgan said that “where there is a right, there is also a duty to act and this goes in two ways”.

Elaborating, he went on: “There is a right for patients to expect the best diagnosis and treatment and the duty of the healthcare institutions to do their best to deliver this

“But it also goes the other way”, he said, “with the citizen or patient having a societal public health duty to take some responsibility for being treated earlier.”

“This makes the individual effectively a part of the health-care system, helping to ensure that they themselves stay as healthy as possible.”

“Coupled with this is a right fort the institution to expect that for example, adherence is increased and good governance exists,” the EAPM chief added.

At the same event, Professor Walter Ricciardi, who among other responsibilities is a member of the expert panel for the EU Commission's DG Health and Food Safety and sits on the executive board of the World Health Organization, highlighted the importance of public health and emphasized the need to "keep the person in personalised health care".

Back to Digital Day 2019…

Stakeholders will doubtless remember that, this time last year at Digital Day 2, the MEGA initiative saw a swathe of member states sign a declaration to gather one million genomes across Europe by 2022.

The 2019 edition saw a presentation of the guidelines for trustworthy artificial intelligence (or AI),by the High-Level Expert Group on Artificial Intelligence (HLEG AI), which led to panel discussions with member states' ministers, third countries and other stakeholders.

Introducing this year’s event at the Steigenberger Wiltcher’s hotel in Brussels, the audience heard speeches from Commission Digital Single Market Vice President Andrus Ansip, Digital Economy and Society Commissioner Mariya Gabriel and, on behalf of the current Romanian Presidency, Alexandru Petrescu, who is minister for communication and information society in Bucharest.

To get things under way, Commissioner Ansip pointed out that the digital single market has come a long way since they held the first Digital day in Rome two years ago.

He added that the events have been a springboard in several waysin that time, as the Digital Single Market has progressed and taken shape, Europe has speeded up digitalization in general, and member states have been able to bring together their resources, talents, initiatives and ideas.

Digital Days, he said, have made it possible for Europe to work more closely on supercomputing, digital industry, connected and automated driving, which represent the commitments made at the first Digital Day in 2017. 

Last year, the event focused on Artificial Intelligence, blockchain, eHealth and innovation. And these are all areas where the Digital Single Market can have a direct impact on people's futures, the commissioner said.

He added that, slowly but surely, the Digital Single Market dream is becoming a reality. People already feel the difference in their daily lives, with the end of roaming surcharges and of unjustified geo-blocking, for example. 

We’ve also seen new rules to stimulate competition and investment in 5G networks and improved online access in rural areasamong other signs of progress.

Meanwhile, we’ve also seen net neutrality rules to give Europeans the right to access content of their choice onlineno interference or discrimination, and no blocking or throttling.

Meanwhile, there has been stronger cybersecurity, leading to better protection against online threats.

The commissioner of course mentioned that fact that the EU has also achieved stronger protection of data, both personal and commercial, from implementing the General Data Protection Regulation (GDPR).

GDPR has given Europe the toughest and most modern data protection rules in the world, he said, and these rules are becoming the global standard. 

Commissioner Ansip also reminded attendees that aJoint Undertaking that pools national and EU resources to build world-class supercomputing and data infrastructure is nowin place.

 Opportunity knocks

Turning to the focus on AI at Digital Day 2019, the commissioner said that what the Digital Single Market has achieved regarding data has laid the groundwork for the Commission's work to develop a European strategy for human-centric AI. 

Last year's declaration on AI formed a basis for the European strategy and the Coordinated Action Plan with all EU countries (plus Norway) on board, he reminded attendees. Most countries are now preparing their AI strategy or already have one. 

Trust is a big issue alongside data and investment for the successful development of AI.The Commission approach has built on ethics guidelines prepared by the expert group, and a strong and functioning Digital Single Market is under construction. This, said the commissioner, is Europe's people and businesses to get the most and best from the digital age.

Commissioner Gabriel said that the digital transformation is impacting economies and societies in every aspect. 

Digitization is an opportunity to advance technologies,but alsotorethink the very nature of the more established processes. This also raises important challenges, she said, notably for more growth and jobs in Europe.

On the topic of AI, she said that in the wake of last year’s Declaration the challenges for the future remain numerous and include ethics,but also the need for investment.

Technologies such as AI, robotics, the Internet of Things and fast broadband connections, including 5G, are instrumental for the sustainability and competitiveness of European farms and rural businesses, commissioner Gabriel told the audience.

Alexandru Petrescu, Romania’s minister for communication and information society, emphasised the need to understand how Europe can be more competitive and innovative. He welcomed the ambitious approachof the Juncker Commission to set as a key European priority the achievement of a fully digital market and prepare citizens, companies and administrations to reap the benefits of advanced digital technologies. 

The added that the strategy has provided businesses the opportunity to scale up and ensured reliable, high speed and affordable networks and services for all. This has boosted Europe's competitiveness, he said.

But the minister stressed that the EU needs to increase the number of digital experts to meet the new and challenging demands in today's labour market.

AI and ethics

Regarding the next steps on AI guidelines, Commissioner Gabriel said that AI has huge potential to transform the world, and can change industries that have an impact on daily life, such as health, for example.

The European AI strategy is based on three pillars: 

  • Being ahead of technological developments and encouraging uptake by the public and private sectors.
  • Preparing for socio-economic changes brought about by AI.
  • Ensuring an appropriate ethical and legal framework.

The commissioner noted that there is an increase of annual investments in AI by 70% due under the research and innovation programme Horizon 2020. The figure will amount to €1.5 billion for the period 2018-2020. 

On top of this, the Co-ordinated Plan on AI set out an action list that will make it possible to reinforce the development of AI in Europe,as well as prepare the ground for the implementation of Digital Europe.

The Commission now wants all member states to put their own national AI strategies in place by June this year. Meanwhile, the High-Level Expert Group on Artificial Intelligence, comprising representatives from academia, civil society, as well as industry, was appointed. It was tasked with producing recommendations regarding investment and policiesand has come up with sevenprinciples on AI ethics. 

These address issues such as responsibility, transparencynon-discrimination, data protection, and the impact on society and the environment.

The next steps will see the pilot phase observe intangible aspects, while assessing whether the principles should be adjusted or reinforced. 

Together "we should show the ability to build consensus around a human centric and ethical AI", Commissioner Gabriel said.

Following the introductory speeches, the guidelines were presented by AI HLEG Chair Pekka Ala Pietila and an initial panel discussion took place involving Jekaterina Rojaka, who is vice minister of the economy and innovation in Lithuania, Andrea Cioffi, state secretary of economic development in Italy, Marek Zagorski, minister for digital Affairs, Poland, Mona Keijzer, state secretary for economic affairs and climate policy in the Netherlands and Petr Očko, the deputy minister for industry and trade in the Czech Republic.

Armenia

Armenia-Azerbaijan clashes kill at least 23, undermine regional stability

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On Sunday (27 September), fighting erupted along the Line of Contact in the Nagorno Karabakh conflict zone, regrettably causing military and civilian casualties. At least 23 military members and several civilians were killed in the heaviest clashes between Armenia and Azerbaijan since 2016, reigniting concern about stability in the South Caucasus, a corridor for pipelines carrying oil and gas to world markets, write Nvard Hovhannisyan and Nailia Bagirova.

The clashes between the two former Soviet republics, which fought a war in the 1990s, were the latest flare-up of a long-running conflict over Nagorno-Karabakh, a breakaway region that is inside Azerbaijan but is run by ethnic Armenians. Nagorno-Karabakh said 16 of its servicemen had been killed and more than 100 wounded after Azerbaijan launched an air and artillery attack early on Sunday.

Armenia and Nagorno-Karabakh declared martial law and mobilised the male population. Azerbaijan, which also declared martial law, said its forces responded to Armenian shelling and that five members of one family had been killed by Armenian shelling.

It also said its forces had seized control of up to seven villages. Nagorno-Karabakh initially denied that but later acknowledged losing “some positions” and said it had suffered a number of civilian casualties, without giving details. The clashes prompted a flurry of diplomacy to reduce the new tensions in a decades-old conflict between majority Christian Armenia and mainly Muslim Azerbaijan, with Russia calling for an immediate ceasefire and another regional power, Turkey, saying it would support Azerbaijan. President Donald Trump said on Sunday the United States would seek to end the violence.

“We’re looking at it very strongly,” he told a news briefing. “We have a lot of good relationships in that area. We’ll see if we can stop it.” The US State Department condemned the violence in a statement, calling for an immediate halt to hostilities and any rhetoric or other actions that could worsen matters.

US Democratic presidential nominee and former Vice President Joe Biden said in a statement that hostilities could escalate into a wider conflict and urged the Trump administration to push for more observers along the ceasefire line and for Russia “to stop cynically providing arms to both sides.”

Pipelines shipping Caspian oil and natural gas from Azerbaijan to the world pass close to Nagorno-Karabakh. Armenia also warned about security risks in the South Caucasus in July after Azerbaijan threatened to attack Armenia’s nuclear power plant as possible retaliation. Nagorno-Karabakh broke away from Azerbaijan in a conflict that broke out as the Soviet Union collapsed in 1991.

Although a ceasefire was agreed in 1994, after thousands of people were killed and many more displaced, Azerbaijan and Armenia frequently accuse each other of attacks around Nagorno-Karabakh and along the separate Azeri-Armenian frontier. Slideshow ( 5 images ) In Sunday’s clashes, Armenian right activists said an ethnic Armenian woman and child had also been killed.

Armenia said Azeri forces had attacked civilian targets including Nagorno-Karabakh’s capital, Stepanakert, and promised a “proportionate response”. Slideshow ( 5 images ) “We stay strong next to our army to protect our motherland from Azeri invasion,” Armenian Prime Minister Nikol Pashinyan wrote on Twitter. Azerbaijan denied an Armenian defence ministry statement that said Azeri helicopters and tanks had been destroyed, and accused Armenian forces of launching “deliberate and targeted” attacks along the front line. “We defend our territory, our cause is right!” Azerbaijan’s president, Ilham Aliyev, said in an address to the nation.

Turkey said it was talking to members of the Minsk group, which mediates between Armenia and Azerbaijan. Russia, France and the United States are co-presidents. Russian President Vladimir Putin spoke by phone to Pashinyan but no details of the conversation were available, and Turkish President Tayyip Erdogan spoke to Aliyev. Erdogan, promising support for traditional ally Azerbaijan, said Armenia was “the biggest threat to peace in the region” and called on “the entire world to stand with Azerbaijan in their battle against invasion and cruelty.”

Pashinyan hit back, urged the international community to ensure Turkey does not get involved in the conflict. The European Union and the Organization for Security and Cooperation in Europe (OSCE) urged both sides to stop military actions and return to negotiations, as did Pope Francis. At least 200 people were killed in a flare-up of the conflict between Armenia and Azerbaijan in April 2016. At least 16 people were killed in clashes in July.

High Representative/Vice President Josep Borrell said: "The European Union calls for an immediate cessation of hostilities, de-escalation and for strict observance of the ceasefire. The return to negotiations of the Nagorno Karabakh conflict settlement under the auspices of the OSCE Minsk Group Co-Chairs, without preconditions, is needed urgently."

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Customs Union: New Action Plan to further support EU customs in their vital role of protecting EU revenues, prosperity and security

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The European Commission has today (28 September) launched a new Customs Union Action Plan setting out a series of measures to make EU customs smarter, more innovative and more efficient over the next four years. The announced measures will strengthen the Customs Union as a cornerstone of the Single Market. They also confirm its major role in protecting EU revenues and the security, health and prosperity of EU citizens and businesses.

In her political guidelines, Commission President Ursula von der Leyen announced that the Customs Union needed to be taken to the next level, in particular, by ensuring an integrated European approach to customs risk management, which supports effective controls by EU Member States. Today's Action Plan does just that.

Economy Commissioner Paolo Gentiloni said: "The EU Customs Union was one of the first concrete achievements of European integration and for more than five decades it has helped to protect Europeans and keep trade flowing across our borders – which are only as strong as their weakest link. Today, new challenges mean that we need to make our customs rules smarter and ensure they work better for member states, citizens and legitimate businesses. This calls for improved use of data, better tools and equipment, and more co-operation within the EU and with customs authorities of partner countries. It also requires better foresight, so that EU customs can face the future with confidence. Today, we set out how we will take our Customs Union to the next level.”

Today's Action Plan includes a number of initiatives in areas such as risk management, managing ecommerce, the promotion of compliance and customs authorities acting as one: Risk management: the Action Plan focuses in particular on ensuring greater availability and use of data and data analysis for customs purposes. It calls for intelligent, risk-based supervision of supply chains and for establishing a new analytics hub within the Commission for collecting, analyzing and sharing customs data that can inform critical decisions, help customs authorities identify weak points at the EU's external borders and manage future crises. Managing e-commerce: in this regard, and in order to tackle the new challenges of ecommerce, obligations on payment service providers and online sales platforms will be strengthened to help fight customs duty and tax fraud in e-commerce.

Promotion of compliance: the upcoming ‘Single Window' initiative will make it easier for legitimate businesses to complete their border formalities in one single portal. It will allow for more collaborative processing, sharing and exchange of information and better risk assessment for customs authorities. Customs authorities acting as one: the Action Plan details the roll-out of modern and reliable customs equipment under the next EU budget.

A new reflection group formed of member states and business representatives will be set up to help prepare for future crises and challenges such as unanticipated global developments and future business models. The EU Customs Union The EU Customs Union – which in 2018 celebrated its 50th anniversary – forms a single territory for customs purposes, where a common set of rules are applied. Within the EU Customs Union, EU member states' customs authorities are responsible for performing a wide and increasing range of controls. Therefore, EU customs have an important role to play in supporting the EU's economy and future growth.

Customs need to facilitate increasing amounts of legitimate trade as quickly and seamlessly as possible. At the same time, authorities are continuously engaged in fighting growing levels of fraud and smuggling of illicit or unsafe goods. Customs are also playing a vital role in our recovery
from an unprecedented health crisis. Since the start of the coronavirus pandemic, EU customs authorities and officials have been at the heart of essential tasks such as facilitating imports of protective equipment, while weeding out counterfeit products like fake masks and counterfeit medicines at the EU's external borders.

It has become apparent in recent years that member states' customs authorities are struggling with the challenges of performing their various roles. Major challenges such as the current public health emergency, the consequences of the UK's departure from the EU's Single Market and Customs Union, and the rise of digitalization and e-commerce will continue and may even increase.

To make their full contribution to the wellbeing of all EU citizens and trade facilitation, our customs authorities must be equipped with cutting-edge technical equipment and analytical capacities that allow customs to better predict risky imports and exports. Enhanced customs cooperation with major international trade partners such as China will support our efforts to facilitate trade and, at the same time, ensure effective controls.

Background

The EU's Customs Union has developed into a cornerstone of our Single Market, keeping EU borders safe, protecting our citizens from prohibited and dangerous goods such as weapons, drugs and environmentally harmful products, while facilitating EU trade with the rest of the world. It also provides revenues for the EU budget. But recently it has become clear that smarter ways of working are needed to allow customs authorities to manage their long and growing list of responsibilities.

The Action Plan benefited from an innovative foresight project on 'The Future of Customs in the EU 2040' that worked to create a shared and strategic understanding among key stakeholders of ways to deal with current and future challenges for customs and to generate a vision for how EU customs should look in 2040.

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coronavirus

'Digitalization and COVID-19: The Perfect Storm' - EAPM Presidency Conference on the horizon: Register now!

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Greetings all!  As our presidency conference is fast approaching on 12 October (agenda here, register here), I wanted to share with you our academic publication entitled 'Digitalization and COVID-19: The Perfect Storm' which was published in the last days.  This will be discussed at our upcoming Presidency conference, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

The article addresses the premise of healthcare as a ship in the harbour which is safe, but that is not what ships are built for, as observed by the 19th century philosopher William Shedd.

In other words, technology of high potential is of little value if the potential is not exploited. As the shape of 2020 is increasingly defined by the coronavirus pandemic, digitalization is like a ship loaded with technology that has a huge capacity for transforming mankind’s combat against infectious disease.

But it is still moored safely in harbour. Instead of sailing bravely into battle, it remains at the dockside, cowering from the storm beyond the breakwaters. Engineers and fitters constantly fine-tune it, and its officers and deckhands perfect their operating procedures, but that promise is unfulfilled, restrained by the hesitancy and indecision of officialdom.

Out there, the seas of the pandemic are turbulent and uncharted, and it is impossible to know in advance everything of the other dangers that may lurk beyond those cloudy horizons. However, the more noble course is for orders to be given to complete the preparations, to cast off and set sail, and to join other vessels crewed by valiant healthcare workers and tireless researchers, already deeply engaged in a rescue mission for the whole of the human race.

It is the destiny of digitalization to navigate those oceans alongside other members of that task force, and the hour of destiny has arrived.

This article focuses on the potential enablers and recommendation to maximize learnings during the era of COVID-19 taking into account the different learnings from COVID 19 and puts it in the framework of capacity and potential which the EU as well as the Member States have collectively.

The article positioned  these elements with a nod to the upcoming policy frameworks such as the Beating cancer plan and the Cancer Mission, the European Health Data Space, the expanded health programme, the review of research incentives and – most recently – the declaration of Commission President Ursula von der Leyen in favour of European Health Union.  Here is the link to the articles.

So, what are among the topics on the table for Oct 12th for our Presidency Conference?

The current COVID-19 crisis has thrown many European, and indeed global, healthcare issues into sharp relief.

It has also raised important questions, not necessarily new ones, but ones that have shifted more into focus during the pandemic.

One such question is whether the EU should have a bigger role in public health – and particularly in the provision of health technology. This, of course, would impinge upon the closely guarded Member State competence in healthcare so, if this were to happen, how would that be?

Another question is how can the now very evident gaps be bridged to in order to better protect Europe’s health ahead of another crisis? What are the priorities? The broader question, as mentioned above, is whether it’s time to give the EU a bigger role in Europe’s health protection.

Meanwhile, at the heart of personalised medicine, is the hugely expanding use of health data. This is a sensitive topic. There’s certainly a need for the health-science community to talk more openly about using personal health data in research to enhance human health and eradicate diseases such as cancer and the public has to be at the centre of any and all discussion.

Many national and international initiatives rely on comprehensive data analytics to drive evidence-based solutions to improve health outcomes which our article entitled 'Digitalization and COVID-19: The Perfect Storm' addresses in some details from the different cardinal directions of the compass.

Such initiatives means, of course, that personal health data is an extremely valuable commodity for research and should only ever be used in a responsible, ethical and secure way that is in the interest of society.

Transparency on why and how we use data is vital if Europe is to maintain the social licence for data-driven research. Trust is paramount.

On top of this, Europe’s digital infrastructure needs strengthening in general, and in order to deal with the impact of Covid-19 in particular. And then there are future public health crises to be considered…

Better integration of Artificial Intelligence into the public health response should be a priority; Analysis of big data relating to citizens' movement, disease transmission patterns and health monitoring could be used to aid prevention measures.

In response to travel bans, closures, and recommendations on social distancing to limit the spread of the virus, there has been a necessary shift to digital tools where applicable to keep the world turning - not least what parts of the economy have been salvageable.

The above are just an example of the huge topics, among many up for discussion on the day. So be sure to join us on 12 October.

Once again, Here is the link to the academic piece entitled 'Digitalization and COVID-19: The Perfect Storm' as well as the links to the agenda by clicking here, to register here for our presidency conference.

For more information, please contact: 

Dr. Denis Horgan, PhD, LLM, MSc, BCL
EAPM Executive Director,
Chief Editor, Public Health Genomics
EAPM, Avenue de l'Armee/Legerlaan 10,
1040 Brussels, Belgium
T: + 386 30 607 281
Website

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