#PerMed2016: Stakeholders update - genomics and its ‘MEGA’ potential for personalised medicine

The Brussels-based European Alliance for Personalised Medicine (EAPM) this week hosted a high-level meeting to share views and opportunities for an European-level initiative on genomics. Leading experts in the field gathered in the Belgian capital on 31 May to discuss a framework necessary to support an environment for personalised medicine, writes EAPM Executive Director Denis Horgan.  

The aim was also to obtain multi-stakeholder consensus via bottom-up policy-making to support EU member states and the European Commission.  Among those present were: Mario Romao, of Intel; David Boyd, from AstraZeneca; Rob Hastings, of genetic giant Illumina; Jacques Beckmann, from the Swiss Institute of Bioinformatics; Ivo Gut, of the Centro Nacional de Analisis Genomico; Jan-Eric Litton, from bio-banking experts BBMRI-ERIC (a joint force from 18 member states plus one international organization) and EAPM’s Denis Horgan.

The idea of EAPM and its stakeholders is to build on the Luxembourg Council Conclusions on Personalised Medicine, some of which are specific in this area. Notable clauses in the Council Conclusions saw invitations to member states to:

• Use genomics information with a view to integrating advances in human genomics into public health research, policy and programs, in compliance with existing national provisions concerning personal data and genomics (Article 16);
• foster co-operation in the collection, sharing, management and appropriate standardization of data necessary for effective research into, and development and application of personalised medicine, in compliance with data protection legislation (Article 20), and;
• promote cross-disciplinary interaction, notably between specialists in genetics, in using statistical methodologies, bio- and health informatics and epidemiology and among health professionals, in order to ensure better understanding of the available data, more efficient integration and interpretation of information from multiple sources and appropriate decision-making on treatment options (Article 21).

Prior to the Luxembourg conclusions, the European Commission in its Communication 'Towards a thriving data-driven economy' called for the EU to support 'lighthouse' data initiatives capable of improving competitiveness, quality of public services and citizens’ lives.

Such initiatives maximize the impact of EU-funding within strategically important economic sectors. Furthermore, the Communication presented personalised medicine as one of the possible target areas. It is clear that, economically, Europe needs to close a widening productivity gap between itself and the US and this can be greatly assisted by the use of more information technology across 28 member states.

For example, it was recently estimated that so-called Big Data could save the public sector €100 billion in ‘operational efficiency improvements’. In respect of personalised medicine, Big Data represents the vast and continuously growing amount of health information (including biomedical and environmental) and its usage to drive innovation in translational research and health outcomes tailored to the individual.

Using these data to first understand the cause of disease, the medical profession can then develop new drugs and therapies to find the cure, as well as other health interventions targeting the individual. The personalised, individual approach requires advanced technologies and processes to collect, manage and analyse the information and, even more importantly, to contextualise it, integrate it, interpret it and provide rapid and precise decision support in a clinical and public health context.

Also part of this Big Data drive, the meeting proposed an EU genomes project for Europe.   Such a project would “encourage dialogue with member states’ authorities and stakeholders to facilitate step-by-step implementation of the public health genomics approach both at European Union and national level…and facilitate ongoing initiatives”.

In the EU, of course, health care is a national competence, but EAPM wants each member state (or at least a 'coalition of the willing’) to develop a genome project proportionate to their populations.

Such a project will take into account that every country has bigger or fewer resources, but the stunning concept would ideally see a linking together of the efforts in order to reach the 1 million figure.

Last year, President Obama announced the US’s commitment to personalised medicine by launching the Precision Medicine Initiative with committed initial funding of $215 million.   The intention of the project is to build a research cohort of at least a million Americans, incorporating information from genomic analysis as well as clinical information to inform on cancer and other diseases and integrate this into routine healthcare.

If the US can do it with a population of 320 million, surely Europe can achieve it with around 500 million citizens of its own.

A number of genome sequencing initiatives are trying to capitalise on this potential. Within the EU the UK has led the way with the 100,000 Genomes Project. This looks at the genome sequences of patients with a rare disease or cancer.

The Brussels meeting looked at what benefits could be realised by undertaking an EU genome project in a coordinated effort across all 28 member Ssates and realized that it would represent a real breakthrough within the EU and allow the utilisation of the research across different health domains.

A project of this magnitude would capitalise on previous and current European programmes to derive a number of benefits:

• Improve care across all stated health priorities and reduce current inequalities in access to innovative technologies such as genetic testing, with the most immediate health and care impact being on rare diseases;
• develop deeper and broader collaboration across European researchers and provide a database of enormous lasting value to this community;
• provide a positive vehicle for patient engagement on use of health data, involvement in research and become more active participants in their own health and healthcare decisions;
• encourage clinical education programmes to develop a workforce capable of embracing the technology revolution in healthcare that is in progress;
• stimulate the European life science and health industry and embrace new companies active in this space focused on the European market, and;
• take advantage of the scale of Europe allied with the less fragmented and predominantly social health systems to lead in personalised medicine and achieve the health and economic benefits from increasing preventative and participatory health care.

Some of the key dividends identified at the meeting would be improved outcomes in various diseases (rare or otherwise) such as breast, lung and prostate cancer, improved economic returns and a lowering of adverse drug reactions.

Big Data is here to stay, and it is now time to utilize it via a huge joint effort for the benefit of all of the EU’s potential 500 million patients across its member states.  The EAPM Big Data WG will be working to develop this activity.

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