In what will be a major boost to cancer patients across Europe, Digital Day 2018 saw the signing of a major declaration between 15 Member States to commit to a One Million Genomes Project.
This one-day event at the ‘Square’ venue in Brussels brought together high-level stakeholders in the fields of digital technology, telecommunication and healthcare including cancer, organised by the European Commission under the Bulgarian Presidency of the EU.
Mariya Gabriel, the Commissioner for Digital Economy and Society, oversaw Member States’ representatives co-signing a Joint Declaration indicating political support for linking existing and future genomic databanks, on a voluntary basis, in order to reach a cohort of at least one million sequenced genomes accessible in the EU by 2022.
16 Member States of the European Union have so far endorsed the political Declaration.
14 Member States signed on April 10th; Czech Republic, Cyprus, Estonia, Greece, Finland, Italy, Lithuania, Luxembourg, Malta, Portugal, Spain, Slovenia, Sweden and the U.K. Bulgaria and Croatia to sign in the coming days as well.
Said David Byrne, former European Commissioner for Health and Consumer Protection, and EAPM co-chair: “We have fought long-and-hard to get this project off the ground and today’s declaration is highly significant for the future of the EU’s patients.
“We applaud this ‘coalition of the willing’ Member States and hope others will join the project down the line.”
In a joint statement, Alexander Eggermont, Director of Gustave Roussy Cancer Campus, Grand Paris, Mark Lawler, Chair in Translational Cancer Genomics, Queen’s University Belfast, Carin Smand, Executive Director, European Haematology Association (EHA), eCancer’s Gordon McVie and Tom Van der Wal, former Board Member of the European Cancer Patient Coalition said “We and our multi-stakeholder colleagues at the European Alliance for Personalised Medicine have long discussed the idea of a project that would bring together genomic data that would benefit cancer patients throughout Europe and, with input from key partners and with excellent leadership from the European Commission’s DG CONNECT, the political will has been found.
“We are convinced that this Declaration will deliver tangible benefits to the EU’s cancer patients going forward.”
The quartet of cancer experts added “Increasingly, evidence is emerging that the appropriate and responsible use of Big Data in many medical contexts including cancer can help save lives, as well as saving the public sector an estimated €100 billion in operational efficiency improvements.
“Access to genomic, clinical, epidemiological and patient outcomes data, acquired using appropriate ethical standards and ensuring responsible data storage, can lead to improved survival and better quality of life for cancer patients, and allow patients to donate their data, in order to facilitate more and better cancer research.”
“Many are agreed that cancer research needs more flexibility and less obstacles, ensuring that the undoubted quality of Europe’s cancer research is translated into meaningful benefit for the European citizen. Population-based cancer registries seek to provide reliable information on cancer, including population-level indicators on, among other things, incidence, prevalence and survival rates. All vitally important pieces of information.”
“The Declaration signed yesterday represents a huge leap forward.”
EAPM’s executive director Denis Horgan said; “There are is much evidence now available (and more doubtless on the way) that genetics is having a hugely positive effect in certain disease areas, such as various forms of cancer, inherited heart disease, and for rare diseases.
“We already know that the majority of patients are happy to donate their data – under the right circumstances – to help not only themselves but other patients down the line. This Declaration is an excellent development based on hard work, interaction and a will to cooperate.”
With rising healthcare costs and individual health systems being increasingly challenged, Big Data has the potential to have a positive impact on the health of all European citizens and provide diagnostic, economic and efficiency benefits, ensuring that patients receive the right information and the right treatment at the right time, while containing costs.
This will lead to a healthier and, thus, wealthier, Europe.
The potential for bettering the health of the EU’s millions of citizens across Member States is therefore substantial.
There are still numerous challenges, and the need for cross-border, pan-European collaboration is greater than ever before.
Hence the general delight at this significant breakthrough.