Many national and international initiatives rely on comprehensive data analytics to drive evidence-based solutions to improve health outcomes.
This means, of course, that personal health data is an extremely valuable commodity for research and should only ever be used in a responsible, ethical and secure way that is in the interest of society.
On the topic of testing, a debate is, not surprisingly, underway in respect of this novel coronavirus. More broadly, one of the ongoing goals of EAPM is improving biomarker access and high-quality testing.
We include here such items as those relating to biomarker testing, EAPM’s MEGA+ drive covering the sharing of all relevant health-related data, and the need for real-world evidence, not least in the adoption and funding criteria of new medicines and treatments.
Certainly while the potential of biomarkers cannot be underestimated, it is clear that patient access to quality biomarker testing is a challenge – yet another barrier put in front of integrating personalised medicine into the EU’s healthcare systems.
There’s much to be debated, and also up for discussion will be the current limitations of biomarkers, the use of centralised databases, and advice that is, or should be, given to patients prior to biomarker testing.
On top of this, EAPM and its stakeholders have long campaigned for the testing for various cancers, most notably that huge global killer lung cancer. We have also looked at minimum and optimal testing, guidelines, while calling for a revision of the 2003 European Recommendation.
We must never forget that trust is one of the most important foundations on which we can place the building-blocks of much-needed cooperation, not least with agreed guidelines on, say, testing, and faith in agreed standards (such as those imposed by the EMA).
Clearly, at the heart of personalised medicine, is the hugely expanding use of health data. And transparency on why and how we use data is vital if Europe is to maintain the social licence for data-driven research. Trust is paramount.
The use of health data is obviously a sensitive topic. There’s certainly a need for the health-science community to talk more openly about using personal health data in research to enhance human health and eradicate diseases such as cancer – and the public has to be at the centre of any and all discussion.
Chair: Alastair Kent, Formerly Director of Genetic Alliance UK
Benjamin Horbach, Health Systems Strategy Leader, Roche
Christa Cobbaert, Chair EFLM (European Federation of Clinical Chemistry and Laboratory Diagnostics)
Bernarda Zamora, Senior Economist,Office of Health Economics (OHE)
Pierfranco Conte, Full Professor of Oncology and Director of the Post Doctoral Fellowship Programme in Medical Oncology at the University of Padova
Stanimir Hasardzhiev, Chair of the Bulgarian National Patients’ Organisation