Digital health care and future-proofing centre-stage at key #EAPM event

Just a reminder that registration is open for EAPM’s Annual Presidency Conference on 24 March in Brussels and you can be sure to join us by registering at the following link and seeing the programme here, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

The conference, under the auspices of the Croatia Presidency of the EU, will have as its over-arching goals ensuring that innovation makes its way into healthcare and future proofing Europe’s healthcare systems. Obviously, one of the relatively recent new tools we have available now is digital health care, and an emphasis will be placed on this. Fortunately, the new Commission seems to have already grasped the significance of personalised medicine and healthcare now and going forward, as it wrote in its European Strategy for Data White paper.

“Data will reshape the way we produce, consume and live. Benefits will be felt in every single aspect of our lives, ranging from more conscious energy consumption and product, material and food traceability, to healthier lives and better health care.

“Personalised medicine will better respond to the patients’ needs by enabling doctors to take data-enabled decisions. This will make it possible to tailor the right therapeutic strategy to the needs of the right person at the right time, and/or to determine the predisposition to disease and/or to deliver timely and targeted prevention.”

It goes on to explain that it is committed to develop sector-specific legislative or non-legislative measures for the European health data space, complementing the horizontal framework of the common data space.  It will take measures to strengthen citizens’ access to health data and portability of these data and  tackle barriers to cross-border provision of digital health services and products. It will facilitate the establishment, in accordance with Article 40 of the GDPR, of a Code of Conduct for processing of personal data in health sector.

These actions, it says, will build upon an ongoing mapping of the use of personal health data in member states and the results of the Joint Action in the context of the Health programme 2020-2023.

EHRS

Heading into the near future, the Commission says it will deploy the data infrastructures, tools and computing capacity for the European health data space, more specifically support the development of national electronic health records (EHRs) and interoperability of health data through the application of the Electronic Health Record Exchange Format.

It aims to scale up cross-border exchange of health data; link and use, through secure, federated repositories, specific kinds of health information, such as EHRs, genomic information and digital health images, in compliance with the GDPR.  It will enable the exchange of electronic patient summaries and ePrescriptions between 22 member states participating in the eHealth Digital Service Infrastructure (eHDSI) by 2022; start cross-border electronic exchanges through eHDSI of medical images, laboratory results and discharge reports and enhance the virtual consultation model and registries of European Reference Networks.

Meanwhile, it will support big data projects promoted by the network of regulators.  These actions, it says, will support prevention, diagnosis and treatment (in particular for cancer, rare diseases and common and complex diseases), research and innovation, policy-making and regulatory activities of member states in the area of public health.

On empowerment through data

The Commission states that citizens should be empowered to make better decisions based on insights gleaned from non-personal data. And that data should be available to all – whether public or private, big or small, start-up or giant.  This will help society to get the most out of innovation and competition and ensure that everyone benefits from a digital dividend. This digital Europe should reflect the best of Europe - open, fair, diverse, democratic, and confident.  Ultimately, Europe aims to capture the benefits of better use of data, including greater productivity and competitive markets, but also improvements in health and well being, environment, transparent governance and convenient public services.

Future-proofing health care

Regarding future-proofing of health care, as well as its conference (more details below) EAPM will host a dinner in the European Parliament on this topic, far ranging as it is.  The potential of personalised healthcare has been increasingly recognised over the last decade. The scope is almost unlimited for exploiting new understanding of disease epidemiology, precision medicine and pharmacogenomics, empowered by technologies such as genomics, single cell sequencing, microbiome analysis and transcriptomics, as well as bioinformatics and digital innovations.

But for all these possibilities, unfortunately personal healthcare has not yet delivered the benefits that it could. Among the many factors influencing personalised healthcare implementation, one of the most critical is the readiness of healthcare systems to respond to the opportunities offered.  Personalised care is a disruptive concept that challenges – and often runs into resistance from - many rigid and traditional patterns of thinking about health. In consequence, an approach to healthcare that is fit for the 21st century has only partially been exploited because of practices, presumptions and even prejudices that date from before the millennium.

Now, at the start of the 2020s, and with complex changes underway in European society and governance, the time is right to review how change can be leveraged to develop a policy framework that will permit maximization of the potential of personalised healthcare. The new era that is opening in Europe, with a new European Commission, a freshly-elected European Parliament, and a growing conviction among Europe’s policymakers that people must be at the centre of any successful and sustainable strategy[, provides a conducive context.

The political guidelines issued previously by now-President of the European Commission Ursula von der Leyen made clear her ambition for a Europe that ‘must lead the transition to a healthy planet and a new digital world’.

The same degree of ambition was evident in the message from the now-EU Health Commissioner Stella Kyriakides in her confirmatory hearing before the European Parliament: “European citizens expect the peace of mind that comes with access to health care… and protection against epidemics and diseases.”

Kyriakides added: “We have some of the world’s…most affordable, accessible and high-quality health systems to deliver on these expectations.”

Clearly, now it the time for action.

More on the conference

EAPM’s Croatia Presidency Conference is coming up, 24 March in Brussels, and is entitled ‘Defining the health-care ecosystem to determine value’. The event is timely to say the least, not least because the Brexit final negotiations will have begun in earnest, whether or not there is an emphasis on healthcare, medical devices and medicines. What we certainly need to do is to re-align priorities to evaluate the needs of patients, healthcare professionals and health systems across the EU to facilitate improved and safer therapies, while enhancing collaboration between EU regulatory and payer groups.

At the event, our multi-stakeholder speakers and delegates will aim to address many questions.  Among the speakers expected to take part are ENVI Committee Chair and MEP Pascal Canfin, fellow MEP Tiemo Wölken, Benedikt Westphalen, Koordinator Molekulare Onkologie, Comprehensive Cancer Centre, and Benjamin Horbach, Health Systems Strategy Leader -Personalised Healthcare(PHC), at Roche.   Tuula Helander, who is Senior Advisor, Ministry of Social Affairs and Health, Permanent Secretary’s Cabinet; and Secretary General at the Finnish Cancer Institute, is also expected.

This session will be followed by those on Biomarkers and Molecular Diagnostics, Prostate Cancer - Prevention and Early Diagnosis,  the Orphan Regulation and Personalised Medicine, Realising the Potential of Data:The Million European Genome Declaration and the EU Digital Health Strategy, and a closing session on Bridging Forward. Among the speakers and chairs expected for these sessions are Mark Lawler, Chair in Translational Cancer Genomics Centre for Cancer Research and Cell Biology, at Queen's University Belfast, Francesco Pignatti from the European Medicines Agency, Paul Naish, Director, Oncology Advocacy and GovernmentAffairs, at AstraZeneca and  Beata Jagielska, of the Polish Alliance for Personalised Medicine. They will be joined on stage by, among others, MEPs Miriam Dalli and Monika Benova.

The European Commission will be represented during the day, as will Europa Uomo, the KU Leuven and the University of Barcelona. A hot topic right now is the review of the EU’s Orphan Regulation of late 1999. This came into being chiefly to ensure that patients suffering from rare conditions have the same quality of treatment as any other patient in the EU.  Ivana Cattaneo, Public Affairs Director Europe, Novartis will be leading discussions, here, which will also feature (among others) representatives from the European Commission, the Parliament, and EURORDIS. And when it comes to the Declaration of Cooperation 'Towards access to at least 1 million sequenced genomes in the European Union by 2022', signed in Brussels in April 2018, EAPM has now put in place MEGA+, which seeks to utilize all relevant medical data, not only genomes.  Clearly, co-ordination and support is needed to develop cross-border solutions for sharing expertise and linking genomic and other health data.

There needs to be a shared vocabulary and data-set standards EU-wide. The day-long conference will feature plenty of question and answer session to encourage full participation of those present and, as part of the event, there will be a cocktail, speeches and, as mentioned, dinner in the European Parliament, featuring keynote speeches from MEPs Sirpa Pietikainen and Monica Semedo. Among those attending during that evening will be Frederique Penault-Llorca, Director, Centre de Lutte Contre le Cancer de Clermont-Ferrand, Giulia Veronesi, Chief of the Robotic Surgery Unit at the Humanitas Hospital in Milan, Stefan Gijssels, Executive Director, Digestive Cancers Europe, and Boris Brkljacic, President of the European Society of Radiology.

We hope you can join us!

For further details, here’s that link again.

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