#DataSharing: Let’s build on this foundation of #PersonalisedMedicine

The Brussels-based European Alliance for Personalised Medicine (EAPM) is currently focussing on the problems inherent in sharing vital medical data, writes EAPM Executive Director Denis Horgan.

These information streams are growing all the time - hence the term ‘Big Data’ - but there are issues with gathering, storing and disseminating the intelligence, as well as obvious ethical issues covering privacy of the individual.

The four-year-old Alliance is a broad-based stakeholder organization made up of patients, researchers, scientists, academics, healthcare professionals, law- and policy-makers and what is clear to the group is that data for medical research often hits bottle-necks because of silo mentalities, interoperability problems in the necessary IT structures, confidentially concerns among pharmaceutical companies and legal minefields over individual rights to control information.

EAPM believes that vastly improved data sharing, under robust rules to protect the donors, is necessary to keep science on the move and the Alliance is very wary of legislators shutting the door to cross-border and regional partners wishing to exchange information.

Researchers have always collected, stored and shared data under extremely well-monitored and ethical conditions and EAPM reminds legislators that this is very different from companies such as Google and Facebook using personal data to target advertising and insurance firms doing the same to formulate personal claims policies.

In this fast-moving modern world, patients are generally keen to share their own data under certain conditions as they, quite rightly according to the Alliance, believe this leads to empowerment, in the sense that it can assist in finding cures and treatments for their own conditions as well as for other patients that will follow.

With the emergence of personalised medicine, which aims to give the right treatment to the right patient at the right time, new technologies (notably genetic-based, imaging-based, and immuno-therapateutic drugs) are allowing for the sort of specialized and targeted treatment that is the ultimate goal of US President Obama’s Precision Medicine Initiative, unveiled and committed to in his 2015 ‘State of the Union’ address.

On top of this, the information technology industry has been quick to get in on the act, not only through so-called smart clothing but through data collection and interpretation via smartphones, watches and super-computers (Apple Inc and Intel are prime examples of this trend).

What all this amounts to, in theory at least, is new avenues and opportunities opening up to allow us to better treat the 500 million potential patients across the EU’s 28 member states.

EAPM and its stakeholders are in the vanguard of this journey down the new health super-highway but the wheels will fall off if data sharing is not allowed to be a prime driver.

To be fair, in its General Data Protection Regulation (by which the European Commission intended to strengthen and unify data protection for individuals within the EU, while also addressing export of personal data externally), Europe did, after intense lobbying, find ways to ensure that the rules were not catch-all and that medical data could still be gathered, stored and shared.

But the simple fact is that not enough of this vital information is getting to where it needs to be and the European Commission, Parliament and indeed Council needs to address this issue by actively encouraging co-operation among member states, while still protecting the diverse citizens that it represents.

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