Opinion: Building a ‘lighthouse continent’ for personalised medicine

Ian Banks, Chairman of European Cancer Organisation Patient Advisory Group, Rebecca Jungwirth, Government Affairs Manager, F.Hoffmann-La Roche,  Jola Gore-Booth, CEO of EuropaColon patient organisation, Professor Angela Brand, Maastricht University, Mark Lawler, Queen's University Belfast

Europe’s got talent, there’s no denying it. From gifted researchers to world-class clinicians to great innovators, the EU’s 28 member states are awash with intellect, skill and a sense of purpose.  

Not only that, but the modern patient is technologically up-to-speed and wants to be informed in a clear and transparent way about his or her options when it comes to treatments and possible medicines.

Patients also want and expect to be empowered and let into the decision-making process. In short, they want to be fully acknowledged as citizens in the same way that everyone else is.

In order to facilitate this and make the best use of the great sea of genius that is the European Union, stakeholders need to pull together as a team and turn the continent into a lighthouse of excellence, beaming its brilliance to the rest of the world.

In personalised medicine (PM) for example, technological breakthroughs and scientific advances have been making waves for some time, but for several reasons they have yet to fulfill their promise.

This is a Europe of much-valued diversity but, in order for PM to work efficiently for the benefit of the EU’s 500 million citizens – and deliver the right treatment to the right patient at the right time – there is a need for much greater collaboration by all stakeholders, political and clinical, not only in a cross-disciplinary way, but across borders and health care systems.

On top of this, the EU must ensure that its clinicians are educated in an on-going manner so that they can make the best use of new treatments and medicines as well as helping to educate and involve the patient.

With this in mind, the European Alliance for Personalised Medicine (EAPM) has called for action at EU level, saying: “By 2020, the EU should support the development of a Europe-wide education curriculum for the training of healthcare professionals to prepare them for the personalised medicine era, by committing to this in 2015. The EU should subsequently oversee the development of an Education and Training Strategy for health care professionals in Personalised Medicine.”

In addition, there should be better dialogue and interaction between these healthcare professionals (HCPs) and the industries producing the innovative tools, treatments and medicines.

It is clear that the true potential of all of this fantastic new science, built around genetic profiling and individual DNA, will never be fully realised unless the front-line clinicians have the knowledge and understanding to exploit it and the innovators have the feedback required to stimulate further advances.

Generally speaking, there is a seeming reluctance for collaboration, not only between health care disciplines and various players in the pharma industry, but also between member states. For example, researchers, industry and even patients’ groups have tended to work in their own ‘silos’ and countries in the past. There needs to be better encouragement and facilitation by Europe’s policy – and lawmakers to tackle the issues of fragmentation and, as often happens, needless, time-consuming and expensive duplication in research.

To help innovations reach patients equitably and transparently, EU countries should develop a coherent strategy to separate useful from ambiguous companion diagnostic tests. HTA could guide health care systems, supporting the necessary future evolution of the diagnostic infrastructure required to optimally deliver the potential of PM.

EAPM has issued a call to the EU stating that, by 2015, there should be “an Integrated Research Road Map for generating evidence, tools and methodologies for progressing, developing and embedding personalised medicine in health care systems in Europe.”

The Alliance also states that, by 2015, Europe should have “increased stakeholder involvement in HTA, appraisal, and related funding decisions with a particular focus on patients and providers, and better alignment to patient access pathways for co-dependent rx/dx technology differential pricing so as to align with affordability/value (between countries, between indications of use)". 

And when it comes to ‘Big Data’, EAPM believes that, by 2020, the EU should also endeavour to achieve widespread benefits for citizens and patients from personalised healthcare by defining, again in 2015, and subsequently executing a data strategy for personalised medicine.

These measures, among others, would help to ensure not only a full take-up of PM but also allow Europe to act as a lighthouse and attract investment to support similar initiatives

We have, this year, a new and more potent European Parliament as well as a new College of Commissioners, each in place for minimum terms of five years. Much can be achieved in that time but a longer-term view is also vital to creating a healthier and wealthier Europe for this generation and those to come.

With its ongoing STEPs campaign (Specialised Treatment for Europe’s Patients), and the setting up of an MEPs’ STEPs Interest Group, EAPM has created a regular forum in which all stakeholders can hear what the patients want and need, and the policymakers can hear one voice. This is an essential forum for moving forward as clear messages are required to equip politicians and the Commission with the right tools to undertake the huge task ahead.

The above topics will be discussed at EAPM’s annual conference on 9-10 September at the Solvay Library in Brussels’ Park Leopold. This will bring together all stakeholders, from patients, clinicians and academics to industry representatives and member state affiliates, and will also include new and returning MEPs.

The Alliance believes that, with the help of the European Union, and with greater collaboration between all stakeholders, we can help mould legislation offering the right laws, in the right place, at the right time – and create a lighthouse continent in the arena of personalised medicine that develops and utilises the best science while attracting investment from both inside and outside of the EU.

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