About the CongressEuropean Congress on Personalised Medicine, Belfast 2017
Personalising Your Health: A Global Imperative!
Welcome to the future… Personalised medicine is here, and here to stay.
And in this era of fast-moving science, such as genomics, and the explosion in potentially paradigm-changing Big Data streams, we need to put Europe’s 500 million potential patients across 28 EU member states at the heart of this incredible revolution.
As the European discussion on personalised medicine gathers pace, the European Alliance for Personalised Medicine (EAPM) was formed in 2012 as a response to the need for a wider understanding of priorities and a more integrated approach among distinct lay and professional stakeholders. By the end of March 2017 it will have held five Presidency conferences.
On top of this, the Alliance will organise the first major European Personalised Medicine Congress will be held in Belfast from 28-30 November entitled ‘Forward As One: Making personalised medicine a reality at national level’ .
This will be held in partnership with Queen’s University Belfast and Visit Belfast.
All sessions of the Congress will include a keynote speech plus a panel discussion and are designed to be interactive. Areas specifically covered will be diseases, general science issues (Big Data, genomics, clinical trials etcetera) and a focus on the views, progress and health landscapes in various Member States.
With involvement from policymakers/regulators, MEPs, national healthcare officials, patient groups, HTA bodies, academics, researchers, healthcare professionals, industry representatives, journalists and more, the aim is to shape the EU health landscape now and into the future.
Recommendations emerging from the Congress will look to steer policy and relevant legislation.
Leaders must step up in interesting times
“May you live in interesting times” the Chinese saying goes, and with two recent polls causing seismic shifts in both Britain (Brexit) and the US (the election of Donald Trump as 45th president) we can certainly be said to be living in them.
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Divisions among some western populations have rarely, if ever, been wider, with hate crime up in both the UK and US and the most bruising and bitter political campaign most can remember having just happened in America.
With Donald Trump continuing to tweet emotionally, despite being president-elect, and with UK prime minster Theresa May seemingly no closer to a post-Brexit strategy, these two examples alone explain why citizens may feel a little let down by their leaders.
This cannot be allowed to happen in healthcare.
There is still much inequality in this arena and there is a real need to ensure inclusivity while making certain that technology is integrated to allow for the right treatment for the right patient at the right time.
The challenges are many, and include providing real patient-centric care (as advocated in the landmark Council Conclusions put forward by the Luxembourg Presidency of the EU last December) as well as an end to silo thinking across and within stakeholder disciplines, more incentives for research, more and better guidelines for, say, screening programmes and a new model for clinical trials that takes into account genetically sourced sub-groups in the rare diseases arena.
The better use of Big Data (alongside security and privacy concerns) needs to occur in order to facilitate and boost research while money needs to be spent in much smarter ways than before to stem the tide of ever-rising healthcare costs.
Cooperation and coordination are also key across all stakeholder, policy-making and law-making groups, as is the need for a much better IT infrastructure that circumvents interoperability issues.
One of the best ways of measuring the success of a nation or nations is by how it treats its elderly and sick – how it cares for its people. Whatever becomes of a multi-faceted Brexit, whatever becomes of Obamacare, the idea of keeping citizens as healthy as is humanly possible has to lie at the core of civilised society.
Our leaders have a duty-of-care in this regard, as do all stakeholders in personalised medicine.
Thought-leaders, policymakers and regulators at the Belfast Congress next November 2017 must, therefore, grasp the nettle and work toward creating a better health environment for EU citizens now and long into the future.
Organisers and rationale
The European Alliance for Personalised Medicine (EAPM) , launched in March 2012, brings together European healthcare experts and patient advocates involved with major chronic diseases. It has held four annual EU Presidency conferences and will hold a fifth in March 2017, ahead of the Congress later that year.
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The mix of EAPM members provides extensive scientific, clinical, caring and training expertise in personalised medicine and diagnostics, across patient groups, academia, health professionals and industry. Relevant departments of the European Commission have observer status, as does the EMA.
The Congress will aim to advance multiple agendas including:
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The Patient Agenda
Modern-day patients are much better informed than ever before and are demanding to share in co-decision-making about issues affecting their treatments. They are also hugely in favour of being able to share their own private health data (under strict ethical and privacy provisions) for the benefit of fellow patients and future generations.
The Education and Training Agenda
Healthcare professionals (HCPs) are falling behind with front-line knowledge as developments in personalised medicine move swiftly. Europe must put programmes in place to bring, and keep, these HCP up to speed, while improving their interaction skills with patients.
The Research and Development Agenda
EAPM and its stakeholders have engaged often with IMI and the European Commission (Horizon 2020) to discuss incentives for industry in the are of R&D with the goal of creating innovative treatments and medicines, as well as speeding up the process from bench-to-bedside.
The Regulation Agenda
Proponents of personalised medicine believe that much legislation governing aspects of healthcare are out-of-date and not fit for purpose in these fast-changing times. Despite health largely remaining a Member State competence, regulations and directives must be brought to modern levels through a consensus of experts and key actors, including patients.
The Economic Agenda
Member State healthcare systems are over-stretched and under-funded, and this will only get worse in a Europe with an ageing population. ‘Smarter’ ways of spending need to be developed to make healthcare across the EU sustainable.
The Member State Agenda
Inequalities in access to the best medicines exist between richer and poorer Member States, and even regionally within many countries in the EU. Meanwhile, cross-border healthcare needs to work better in practice.
The Cooperation Agenda
Without cooperation on topics such as Big Data and clinical trials, Europe cannot hope to move forward in the arena of personalised medicine. Silo thinking must be jettisoned in favour of broader, more ‘smart’ thinking that encourages cooperation across disciplines and within those disciplines.
The Integrated Future Agenda
The full integration of personalised medicine into healthcare systems throughout Europe can only be achieved by locking in all of the above elements, and more besides. The rapidly moving sciences are allowing for radical treatments and new targeted medicines, but the barriers to equal access are many. These barriers must be knocked down to ensure that every patient, regardless of financial status or location, is in a position to receive the best healthcare available.