/CONFERENCE / Welcome Message: Data in day-to-day health




Welcome Message: Data in day-to-day health

Invitation from the EAPM Co-Chairs to attend the EAPM Conference:

Data is everywhere. But how do we harness it for the benefit of Europe's patients? It's not going away, on the contrary, the data pool is growing by the second,. This conference will discuss the best ways to use all this valuable information in a number of key areas.

In this era of fast-moving science and the advent of personalised medicine, we need to put Europe's hundreds-of-millions of potential patients across the soon-to-be 27 EU Member States at the heart of this incredible revolution.

Europe's scientists and researchers are clearly extraordinary - but they all need access to up-to-the-minute data.

Data needs to be shared and the knowledge to interpret it increased. Causing unnecessary suffering to the patient - who is at the centre of healthcare, or should be - is clearly to be avoided whenever possible.

Of course, EAPM acknowledges that there are huge moral and ethical questions about collection, storage, sharing and use of these data. This must be done within robust frameworks that protect the patient but do not frustrate the need for scientists to keep finding new disease cures and better drugs and treatments. But it absolutely must be done.

Making better use of Big Data in a medical sense will achieve several things, including reducing current inequalities in access to innovative technologies such as the aforementioned genetics.

It would also lead to the development of deeper and broader collaborations across European researchers and provide a database of enormous lasting value to all in the EU.

EAPM's working group on Big Data has several Key Policy Ask among its goals for 2018 and beyond.

It has stated that: "By 2020, the EU should endeavour to achieve widespread benefits for patients and citizens from personalised healthcare by defining and subsequently executing a Data Strategy for Personalised Medicine."

Key among the Alliance's aims is to substantially improve cooperation and collaboration among all stakeholders as well as encouraging all players to communicate better across inter-connecting areas in healthcare (and even within their own fields).

The seventh annual presidency conference seeks to address all relevant issues in this fast-changing world of medicine, including Next Generation Sequencing technologies that provide physicians with the ability to make educated diagnoses based on a patient's genome which will lead to better health outcomes for rare inherited diseases, haematology issues and various cancers.

EAPM is working on a key project through 2018 and beyond. This is called the Million European Genomes Alliance (MEGA), that aims to stimulate the life sciences economy, and improve patient care through research into a million genomes gathered across the EU. It will feature prominently at the conference.

This MEGA project will, of course, take into account that every country has bigger or fewer resources, but the concept would ideally see a linking together of the efforts of a coalition of the willing in order to reach the one-million figure.

This would certainly represent a real breakthrough and allow the utilisation of the research across different health domains.

A coordinated, pan-European MEGA project would garner crucial genetic information that could have an immeasurable benefit when it comes to the health of current and future citizens across the EU, and EAPM is working hard to see it implemented by engaging with Member States and the European Commission at the highest levels.

David Byrne and Gordon McVie, EAPM Co-Chairs

Denis Horgan – Executive Director EAPM