Digital Strategy: Putting patients at the heart of the EU agenda

By European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan 

This week saw the launch of the European Commission’s Digital Single Market Strategy, which can be summed up as highly ambitious and equally long overdue. It contains 16 initiatives which will be overseen by DG Connect and has among its goals the laying down of a level playing field across member states while getting a ball rolling again that had become stuck up a tree under the Barroso Commission. 

A key challenge for President Jean-Claude Juncker and his team is the fact that technology is moving swiftly while legislation, by its very nature, is slow. Another issue lies in the silo mentalities of member states although, at least according to Commissioner Andrus Ansip, this may be changing. He said this week: “This time we have really remarkable input from almost every EU member state…I can hope that we can move on much faster.” 

The strategy includes sections on copyright reform, stimulation of the e-commerce debate, internet platforms plus a telecoms strategy, and leaders of the EU’s 28 countries will adopt the plan during June’s European Council summit.  What has arguably been missing from the Commission’s strategy down the years has been an acknowledgement that information and communications technology, or ICT, has become the basis for modern innovative economic systems and that providing better access for consumers and businesses to online goods and services requires the removal of key differences between the online and offline worlds. This would greatly assist in breaking down barriers to cross-border online activity. 

There is also a need to create the ideal conditions in which digital networks and services can work best – this is all about speedy and reliable infrastructures within regulatory conditions that still allow for innovation, competition and investment in Big Data, with all that entails.  And when it comes to research – crucial in the health arena and, particularly, in the exciting and rapidly developing field of personalised medicine – there is a need for a clear legal framework that operates across the EU.

For the benefit of society and 500 million potential patients, researchers must be allowed to access pan-European copyright-protected material, in order to benefit from new technologies.  The Brussels-based European Alliance for Personalised Medicine (EAPM), a multi-stakeholder and fiercely patient-centric organization, has recently published a Lighthouse Initiative on Big Data in connection with the goal of a properly functioning data-driven economy.

Indeed, among the five tenets in its STEPs campaign, essentially the pillars of the Alliance, are calls for a regulatory environment which allows early patient access to novel and efficacious personalised medicine, an increase in R&D in this field and a strategy for the education and training of health-care professionals in this fast-moving arena. None of this can be achieved without a realistic digital strategy.  EAPM has called on the Commission to, by 2020, achieve widespread benefits for patients and citizens from personalised health care by defining, this year, and subsequently executing a Data Strategy for Personalised Medicine. 

With a properly functioning digital structure across all member states, the vast and continuously growing amount of health information can drive innovation in translational research and health outcomes tailored to the individual.  As mentioned earlier, 500 million of us are all either patients or potential patients. The population is aging and that means that many of us will suffer from not one, but several diseases during our lifetimes.

Therefore, it is vital to use these data to first understand the cause of a disease, then develop new drugs and therapies to find the cure.  This personalised, individual approach requires advanced technologies and processes to collect, manage and analyze the information and, even more importantly, to contextualize it, integrate it, interpret it and provide rapid and precise decision support in a clinical and public health context.  As part of a wider digital plan, getting a data strategy for personalised medicine right in Europe would yield multiple benefits - accelerating the development of more effective treatments and potentially helping with the management of healthcare resources.

On top of this it would also act as a foundation for private sector investment and jobs in R&D. Let us be clear, developments in approaches to Big Data in healthcare are of major importance to the future of several industries including startups and SMEs on ICT, pharmaceuticals, medical devices and others.  Health is a huge issue and, in the coming years, it will only get bigger. But, lest we forget, it is all about the patients. It can only be hoped that an improved and effectively implemented digital strategy will have as one of its main aims the ability of patients to access the best treatment available in Europe, whether that be in their own country or elsewhere, and whether they be rich or poor. 

The technology is out there and, with a proper legislative framework in the digital field and a great deal more cross-border collaboration, the goal of giving the right treatment to the right patient at the right time should be achievable.  EAPM applauds what appears to be President Juncker’s commitment to kick-starting that process.

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