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Welcome Message

Education Track

“About EAPM Bridging Conference”

Welcome Message  from EAPM Co-Chairs and EAPM Executive Director

Welcome, and thank you for joining our Bridging Conference between the Croatia and German Presidencies of the EU. Conference which, due to the Covid-19 situation, we have to  hold online, in ‘virtual’ format.

The title of this ‘gathering’ is “Maintaining Public Trust in use of Big Data for Health Science in a Covid and Post Covid World”

Despite us not being able to meet face-to-face, if it follows in the footsteps of our 8th annual Presidency Conference held in similar fashion a few weeks ago, it will be a great success.

It is not only excellent to have you join us from wherever you are, but your taking part in this event is also extremely important in that stakeholders in healthcare and personalised medicine clearly need to collaborate more.

Events such as this allow the pulling together of leading experts in the arena of personalised medicine drawn from patient groups, payers, healthcare professionals plus industry, science, academic and research representatives.

This is the the latest in a series of three Presidency conferences the Alliance will hold during 2020. Not only do these conferences reflect the nature of the relative presidency policies in the healthcare arena, but also act as major events during the first full year of the two new legislative bodies – the European Parliament and the European Commission.

And the event is now even more important given the incredible challenges Europe and the world now faces in the perfect storm of this devastating pandemic.

On top of this, and of course ongoing, are the Commission’s Beating Cancer Plan, the debate over HTA, the Orphan medicine review, new medical device rules and more besides.

So what’s on the table at this event?

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. His, 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 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.

As the pandemic has unravelled and lethally struck at the heart of Europe, the deficiencies in availability and supply of necessary assets for responding have become overtly clear.

There have been huge shortages of personal protective equipment (PPE), such as face masks, as well as too little basic ICU equipment, devices and and infrastructure.

On top of this, there has been inadequate provision of high-tech procedures and processes, for testing (both for infection and for immunity), a shortage of medicine for symptomatic treatment, for any curative therapy, and (not surprisingly given the timescale) for preventive vaccines.

Now, at least in terms of vaccines and medicines, the public and private sectors are being encouraged to deepen cooperation in some areas of research and supply. This raises the obvious question of why, if such cooperation is deemed highly desirable in a time of crisis, shouldn’t it happen as a matter of routine?

Looking back into the recent past – mere months, in fact – several healthcare issues were in the news not least for dividing the EU, such as elusive cooperation on HTA, as well as research incentives for orphan and paediatric medicines, and indeed the use of biosimilars. On top of this were, and are, issues surrounding dealing with anti-microbial resistance, parallel importing, and adaptive licensing.

The list goes on and on…  So will the sudden, enforced Member State cooperation on Covid-19 be echoed in these other case? And if so, how?

Meanwhile, it is clear that many long-term questions have also been raised during the still-serious crisis, not least about Europe’s manufacturing capacity, with the pandemic accentuating Europe’s dependence on imports of health-related assets that have been systematically outsourced.

Should measures be taken to encourage (or oblige) relocation of essential manufacture of medicines and ingredients to the EU?

Coming to light have been proposals for some form of European state-owned research and production facilities, as well as about setting up a European strategy for pharmaceutical supply and the pharmaceutical industry.

Should this be more firmly integrated into EU decision-making structures? And if so, how?

There are many questions to be answered, with the above and more set to be debated at this conference.

Here’s a brief outline of the topics you can expect to hear about and get involved in at this conference:

Preparing health systems for Covid and Post-Covid era in the digital age

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 in to the public health response should be a priority;

Analysis of big data relating to citizens’ movement, disease transmission patters and health monitoring could be used to aid prevention measures.

In 2020, we have been forced to rethink our daily lives, from work to school to entertainment to how not to go crazy during self-isolation. 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.

Using telemedicine limits human-to-human contact, critically important to slow the transmission in situations such as the one we find ourselves in right now.

Trust and the use of the data

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.

This 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.

Giant leaps have been made recently with the signing of a Declaration on one million European genomes, and EAPM’s own MEGA+ initiative, which aims to gather and share all relevant forms of healthcare data, not just genomes.

And it becoming increasingly clear how valuable data can be during the current pandemic, as well as any subsequent, similar crisis.

Unfortunately, at the moment, it seems that data is not accurate enough to track a virus that needs those infected to be in close contact with others to spread, while the jury is out on whether it is possible to anonymise the data.

The European Commission is using the Joint Research Centre to carry out the analysis regarding data to map the spread of the virus.

Digital Solution – Cancer – Prevention and Early Diagnosis

How can digital health improve healthcare in a world that has seen us susceptible to the Covid-19 outbreak? Tracking apps are one possibility, as discussed above, as is better screening and evaluation.

But as well as any improved technologies and their applications, we need best practices in place. Education is also a key factor – and public common sense, which has been sadly lacking often during the crisis with certain members of society ignoring very clear recommendations about self-isolating and, more to the point, social distancing.

But it is important to look way beyond the current crisis and to better utilising the options that we have, that include education and prevention, triage and testing, tracing and tracking, quarantine and in-hospital management, and post-care management: Patient monitoring and research support.

When it comes to cancer, as well as the implementation of screening programmes, the discovery of novel and improved diagnostic and therapeutic tools have helped to make this happen.

Personalised medicine is not only treatment: Molecular diagnostics

Many national and international initiatives rely on comprehensive data analytics to drive evidence-based solutions to improve health outcomes.

This 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.

On the topic of testing, a debate is, not surprisingly, underway in respect of this novel coronavirus. More broadly, one of the ongoing goals of EAPM is improving biomarker access and high-quality testing.

We include here such items as those relating to biomarker testing, EAPM’s MEGA+ drive covering the sharing of all relevant health-related data, and the need for real-world evidence, not least in the adoption and funding criteria of new medicines and treatments.

Certainly while the potential of biomarkers cannot be underestimated, it is clear that patient access to quality biomarker testing is a challenge – yet another barrier put in front of integrating personalised medicine into the EU’s healthcare systems.

There’s much to be debated, and also up for discussion will be the current limitations of biomarkers, the use of centralised databases, and advice that is, or should be, given to patients prior to biomarker testing.

Next steps

As we know, personalised medicine tailors medical treatment to a patient’s personal history, including lifestyle, work and and environment.

In this context it supports the sustainability of healthcare systems, which is becoming increasingly important due to the increasing burden that chronic diseases, including chronic cancer, place on healthcare services and their infrastructures.

However, personalised medicine is becoming more-and-more about education, ongoing trying for healthcare professionals, the use of data for prevention purposes, patient power, and the vital aspect of early diagnosis.

How can we optimise all of these elements for the benefit of the EU’s current patients and those who will follow?

Meanwhile, there is clearly a huge challenge in terms of sustainability of the whole healthcare system. Not just as a result of the Covid-19 crisis, however, as the majority of the issues have always existed.

The trick is to learn huge lessons from the pandemic, our reaction to it, and the resources that were available as well as those that were not, in an effort to move forward more quickly and effectively in a post-covid world.

David Byrne

David Byrne
EAPM Co-Chair

David Byrne Signature
Dennis Horgan

Denis Horgan
Executive Director
European Alliance for Personalised Medicine

Dennis Horgan Signature
Gordon McVic

Gordon McVie
EAPM Co-Chair

Gordon McVie Signature