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#EAPM: Call for Bulgaria to be bolder on innovation in Council Conclusions

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The Bulgarian-based EU Council Conclusions on the European Open Science Cloud & Accelerating knowledge circulation in the EU’ are due in early-to-mid-June, just before the country’s first EU presidency ends, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

But already certain draft versions are circulating and EAPM has its hand on the tiller in an effort to guide the conclusions in the ideal direction in the arena of European healthcare.

As ever, EAPM has been directly involved in policy and political processes, and these engagements have included meetings (and a major lung-cancer conference) in the country’s capital Sofia, not to mention the Alliance’s own recent conference in Brussels which addressed several issues arising.

One draft conclusion, on the European Open Science Cloud, or EOSC, attempts to engage the following facts:

Europe is a global scientific powerhouse. It has all the necessary ingredients to shape a prosperous and safe future: 1.8 million researchers working in thousands of universities and research centres as well as in world-leading manufacturing industries, a suite of increasingly inter-connected research infra-structures, a thriving ecosystem of small and medium-sized enterprises and an increasing number of hotspots for start-ups.

With just 7% of the world’s population and 24% of global GDP, it produces around 30% of the world’s scientific publications.

But compared to other major economies, Europe suffers from a growth deficit which, together with the experience of uneven progress, fuels social disenchantment and political divisions across the continent.

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At the heart of Europe’s slow growth lies its innovation deficit. Europe does not capitalize enough on the knowledge it has and produces.

And this is the crux of the matter.

The EU trails well behind many trading partners when it comes to innovation. It spends less than half as much on business R&D as a share of GDP compared to, for example, South Korea, and the share of value-added in high-tech manufacturing is half that country’s average.

Meanwhile, the EU produces three-times-less quality patent applications than Japan. And the amount of venture capital available across the bloc is at least five times lower than in the US; the number of fast-growing start-ups is equally five times lower.

OK, this is hardly news. In fact EAPM has itself published articles highlighting much of the above.

In essence, there is nothing really life-changing in the draft conclusions that will tackle these substantial issues. EAPM believes that Bulgaria and its Conclusions should be bolder and more ambitious to bring much-needed focus to ways that can support innovation.

It’s not impossible. Here’s an example of the march of progress: The landmark Declaration on data for health-care purposes, signed at the European Commission’s recent Digital Day 2018, saw 15 countries sign a Joint Declaration to collaborate on a groundbreaking one-million genomes project.

This will work on a voluntary basis with the goal of making a cohort of one million sequenced genomes accessible in the EU by 2022.

EAPM originally floated the idea under the banner of MEGA – Million European Genomes Project – and with the leadership of DG Connect, the idea has gathered support and pace. Its a win-win.

Meanwhile, the European Commission and certainly Bulgaria, understands that data-driven innovation is a key enabler of market growth, job creation, particularly for SMEs and startups, and the development of new technologies.

It allows citizens to easily access and manage their health data, and allows public authorities to use data better in research, prevention and health system reforms.

The Commission points out that several national and regional initiatives already support the pooling of genomic and other health data to advance research and personalised medicine.

It adds that ensuring interoperable standards for genomic and other data is also critical for an effective sharing of datasets.

Happily, the EU executive intends to support the pooling of the EU’s data resources and to facilitate their use for research and health policy. It says it intends to step up coordination between authorities across the EU to implement the secure exchange of genomic and other health data in order to advance research and personalised medicine.

That’s all very well, of course, but unfortunately, as EAPM has said repeatedly, in the world of modern health change seems slow for most citizens.

There are clear discrepancies in availability of the best care for all, the divisions in access from country to country, wealthy to poor, are large. There are even discrepancies between regions of the larger countries, where access often varies alarmingly.

Too many member states (with their EU-recognised national competences when it comes to healthcare) appear to be clinging stubbornly to the concept of a ‘one-size-fits-all’ view in healthcare - which is becoming increasingly impractical if not downright irresponsible - and often stifle advances possible through personalised medicine.

It is widely recognized that there is certainly a need for more interplay between various research centres across the EU’s soon-to-be 27 member states.

At the same time, the legislative arena encompassing health has grown huge and often unwieldy, despite the very best intentions of various presidencies and the EU’s executive.

Let’s be clear that bigger is not always better. The rapidly moving health advances, increased knowledge on the part of patients, the emergence of Big Data (note the upcoming implementation of the General Data Protection Regulation) and much more, are quickly changing the face of health care in Europe.

But it’s hardly a bolt from the blue to state that healthcare thinking across the EU isn't changing fast enough. The new technologies can certainly speak for themselves, but only if allowed to do so.

A further conclusion (still a draft, as stated) focuses on Accelerating knowledge circulation in the EU.  There are, quite frankly, too many ‘silos’ operating with self-interest and among themselves.

For example, in that area, the World Health Organization says it will not achieve its targets to expand universal health care and protect people from health emergencies if countries are not more flexible with the money they give to it.

Meanwhile it criticizes what it calls the ‘earmarking’ of funds, which it deems counter-productive.

Back to Bulgaria now and the draft Conclusions make note of previous efforts forged under various presidencies, including a call back in 2015 to acknowledge data-intensive and networked research as a driver for faster and wider innovation. Well; that’s a no-brainer.

It was stated three years ago that openness of research data “could further increase the efficient use of public funding while making data discoverable, accessible, assessable, reusable and interoperable would considerably increase innovation potential and create new business opportunities”.

Later conclusions highlighted that, during the transition towards an open science system, unnecessary legal, organizational and financial barriers to access results of publicly funded research should be removed as much as possible and appropriate.

This would be in order to attain “optimal knowledge sharing”.

Conclusions also stressed that research funders need to foster open access, data management mandates and fair principles as well as incentives and rewards.

It hasn’t happened yet.

The Commission and member states were urged to ensure a user-centred environment, “serving the research community foremost at the start, building on its most advanced practices, and expanding in the mid to long-term, to the broader user community, including SMEs, citizens and public authorities”.

What is still missing, in essence, are clear and effective interrelations among the different bodies constituting governance frameworks and what could be much better are inclusiveness and openness in governance frameworks “to ensure effective communication among doers and decision-makers”.

EAPM and its multi-stakeholders believe that Bulgaria needs to be bolder in its ‘asks’ to the Commission and member states when it finalizes its official Conclusions before the presidency comes to an end on 30 June.

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