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




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.

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