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#EAPM – #Austria signs up for genome project and puts emphasis on digital health

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Austria, the current holder of the rotating Presidency of the EU, has this week signed up to what began life as the European Alliance for Personalised Medicine’s (EAPM) MEGA initiative, joining those who signed a declaration in April.  MEGA stands for Million European Genomes Alliance and the welcome addition of Austria is the result of continued engagement over recent months, and the addition of the Presidency is a great boost to the ongoing project, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

Briefly, at the European Commission’s Digital Day 2018, 15 member states’ representatives co-signed a Joint Declaration indicating political support for linking existing and future genomic databanks, on a voluntary basis, in order to reach a cohort of one million sequenced genomes accessible in the EU by 2022.

EAPM had long floated the idea of such a project and with excellent leadership from the European Commission’s DG CONNECT the political will has been found.  The project will lead to increased investment for smaller countries and regions, which also ties in perfectly with EAPM’s SMART Outreach. SMART stands for Smaller Member states And Regions Together.

EAPM will be working hand-in-hand with the Austrian Presidency to move the initiative forward.  In essence, the joint initiative aims to share genomic data across European countries in a secure way. Central to the plan is that the data-sharing effort should help to develop more personalised medical treatments for cancer and other diseases, as well as aid vital prevention efforts.

Earlier this week, an EU Informal Health Council meeting was held (10-11 September) in Vienna, under the Austrian Presidency, of course, with digital health, access to innovative medicines and  – by association – Health Technology Assessment on the agenda.  During the gathering the Austrian Council presidency pledged to produce proposals in December to improve the interoperability of patient data systems across the EU.

The country’s Health Minister Beate Hartinger-Klein put forward the idea that member states should consider specific guidelines for eHealth investment. This, she said, would allow more efficient data sharing through better interoperability – basically aligning systems and software to allow them to work together more efficiently.  What is required is an interoperable digital infrastructure encompassing all in-patient and out-patient systems with the necessary catalogues. Meanwhile, the eHealth network of various member state authorities should come up with specific guidelines for investment across Europe.

Austria says it would like to prioritise these aims in a framework.  Hartinger-Klein said she is looking for the EU to adopt “concrete measures” on eHealth by the end of the year. This topic will be a focus of EAPM’s work going forward.

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The meeting also heard that experience has shown that some medical products are only available after a delay and there is a need to ensure rapid availability across all member states.  During the meeting, health ministers discussed regulatory and policy-related challenges in securing supply of centrally authorized medicines and investment in digital health. The meeting felt that joint efforts to ensure access need to be continued, but to be worked on. Smooth co-operation between European approvals’ authorities as part of the public healthcare system is a vital cog in the wheel.

Also discussed were orphan medicines targeting rare diseases. Health and Food Safety Commissioner Vytenis Andriukaitis said that he was “grateful to the Presidency for putting this important topic on the agenda”. The Commissioner added: “We are a long way off making full use of digital health; we need frank and open discussions like this to build opportunity and break down the barriers that block its potential.”

He called for support for eHealth solutions that are interoperable to allow health systems to ‘speak to each other’. This means tackling the technical, legal and political barriers that currently limit cross-border data exchange, he said.

Andriukaitis also urged member states to prioritize digital health going forward. Aside from this, the debate on the European Commission’s proposal for a joint action on HTA is gathering steam, after several meetings of the Parliament’s Environment, Public Health and Food Safety Committee committee and an imminent vote in Strasbourg.

EAPM is following all of the topics as closely as possible and this will be a focused of our in Congress in Milan from Nov. 26 – 28, 2018.  To register, please click here and to see the programme, click here

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