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Frustrated patients deserve better healthcare strategies

Publication date: 21.11.2016

In these times of super science and breakthroughs in genomics, there has never been a better opportunity to give the right treatment to the right patient at the right time, writes European Alliance for Personalised Medicine Executive Director Denis Horgan.

Not only that, but increasing patient awareness and knowledge has brought with it new demands on their behalf to be at the centre of their own treatment - part of co-decision making, and a two-way street between the patient and the front-line healthcare professionals, or HCPs.

At least, that’s the theory. But obstacles still exist. Training of HCPs needs to be higher on Europe’s agenda if these doctors and nurses are to have up-to-date knowledge of new treatments and medicines, (which they can then pass on to their patients).

And they need to be aware of clinical trials taking place that could benefit their patient and be committed to referrals where appropriate.

Also, HCPs these days should be required to have better communication skills and must learn to take into account a patient’s lifestyle, work scenario and more when suggesting a treatment. They need to listen more, in effect.

Patients, for their part, have many questions. They are well aware that science is moving quickly, that new, rarer diseases are being discovered often, that understanding and utilisation of genomics is moving at a blinding pace, and that data gathering, storage and sharing (at least theoretically) means that much more information is available that could help to find a cure for their disease, and even prevent them developing.

But they often ask why more research isn’t being done in the area that affects them. In some cases, the research actually is being done - but the information is either being duplicated across Europe (or, indeed, globally), failing to leave silos, or being anxiously protected by vested interests.

Of course, this is all very frustrating for the patients, most of whom have no problem with sharing their medical data (under controlled ethical conditions) for the benefit of society. They are dismayed to see too-protective laws and/or a lack of infrastructure that effectively combine to slow down (and in some cases block) that information transfer.

Not only that, but there is a lack of proper incentives for researchers and pharmaceutical companies to invest time and money in developing drugs and treatments for, say, the small population groups that make up a rare-disease suffering sub-group.

As touched upon above, a lack of collaboration (whether intentional or not) is hampering what should be the relentless march forward of personalised medicine. Too much silo thinking, within disciplines as well as across them, is holding back efforts to share knowledge, data and more. This benefits no-one in the long run and can be severely damaging to the patient even in the short term. No wonder patient groups get angry and frustrated.

And the senseless- and obstructionist-seeming policy of making it as difficult as possible for patients to easily access their own health data leads to frustration at best and anger at worst in many citizens. They own the data, after all, so why, they ask, can’t they get hold of it without jumping through seemingly endless hoops?

They have the knowledge and they have the right to free and full access to data that concerns them personally, and may concern their parents too. 

Basically, they will tell you, there is too much of a ‘nanny state’ philosophy surrounding personal medical data and patients, quite rightly, have had enough of this. They want - they demand - to be treated as equals in management of their own illnesses and treatments.

Not that society makes it particularly easy for patients to get up-to-speed with knowledge about some of their conditions. Access to the best healthcare is not equitable across Europe, varying between richer and poorer countries and even within regions, but one would have thought that the internet was the great equaliser, right? Not necessarily, as subscriptions to leading medical journals can be expensive and, therefore, inaccessible to many people who are simply searching for up-to-date, reliable and often complex information.

Law- and policy-makers know all this. But despite promises to act every time the political cycle swings around (four or eight years, five or ten years) our never-ending supply of new leaders rarely seem to cooperate on an EU-wide scale, which is actually what is needed.

Pledges to create better integrated systems, promises to cut down on bureaucracy, vows to implement better guidelines, all of these are legion. Patients have heard them all time-and-time again but the fact is that a lot of regulation, for example, is out-of-date and no longer fit for purpose.

Patients have a right to be frustrated and angry. They are demanding to be central to their own healthcare processes and, while the situation is slowly improving, it is not happening fast enough to keep pace with huge leaps in science.

This must change, and soon, for the benefit of the current and potential 500 million patients across the European Union’s 28 Member States.

Author: Denis Horgan
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