Opinion: Patient power - dismantling the health care lottery

By Tom Van der Wal, EAPM Patient Representative, Netherlands (melanoma patient)

More and more patient groups and individual citizens are becoming aware of the potential of personalised medicine, or PM, with its ability to give them the right treatment at the right time and put them at the centre of European health care.

Yes, we want empowerment, yes, we want to have our illnesses and the treatment options explained in a transparent, understandable yet non-patronising manner to allow us to become involved in co-decision, yes, we want to own – and have unreserved access to – our own medical data and, yes, we want greater access to clinical trials and cross-border treatments that could improve our lives and, in some cases, save them.

The problems inherent in gaining the above are many, but among the solutions are; better training for health care professionals in up-to-the-minute technologies (such as the ‘omics’ used in PM); a different mindset from those same clinicians that allows the patient to participate in discussion and decision-making at all levels, the setting up of data co-operatives allowing patients not only access to all of their personal data on request but giving them control over who uses it, how it is used and when, and; changes from on high – and by that we mean from the European Parliament and European Commission – to make clinical trials more accessible and affordable cross-border treatments a reality and not just a pipe-dream.

In a 500 million citizen-strong EU of 28 member states staring into the abyss of a society with an aging population that will inevitably become ill at some stage, giving patients access to the best possible treatment available in Europe is not just a moral issue, it’s a financial one, too.

We are, hopefully, emerging from a downturn in the economy that has almost crippled several member states and, of course, high on the list of austerity measures has been the short-sighted, counter-productive reeling in of health services. This is a patent nonsense – if patients are given better preventative and/or better ongoing treatment - using PM, for example - not only are they kept out of expensive hospital beds undergoing treatment by expensive clinicians using expensive kit, but many could actually stay in the workplace during treatment thus contributing to the economy and paying into the tax pot rather than draining it. It’s a no-brainer and member state health services in particular and the EU in general need to see what’s staring them in the face.

On another matter, no less important but more specific, if patients can actually get into a clinical trial – and there are barriers to this that include a lack of information about when and where they are taking place, difficulties in reaching the trial centre that can be cross-border or even simply regional and, in some cases, a lack of eligibility, not because they don’t fit the trial profile but because they cannot get access to their own medical data to prove their suitability to the trial organizer.

Legislators in the EU and individual member states need to wake up and smell the coffee. Organizations such as the European Alliance for Personalised Medicine (EAPM) are fighting for the rights of modern-day patients and need to be listened to. Today patients are knowledgeable, frustrated and demand empowerment. We will not accept our fate in the way that our fathers and grand-fathers did. Why would we when we know plenty about the new methods and science out there and its potential?

Patients will no longer accept a dearth of funding for life-saving research, we will no longer accept patronisation by old-fashioned clinicians, we will no longer accept the with-holding of personal data that we should own, we will no longer accept being left out of the debates and the decision-making processes and we will no monger accept our fellow patients needlessly dying through a lack of access to the best treatment because they were born under the wrong flag or even under the wrong postcode.

The best available health care is a right under the basic tenets of the EU, not part of a win-some, lose-some game. And as modern-day patients we refuse to play the health care lottery any longer.

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