Empowering the citizen when it comes to healthcare involves several elements, writes European Alliance for Personalised Medicine executive director Denis Horgan.
It can be education regarding what is actually out there in modern medicine (not least full-genome sequencing), leading to more up-to-date knowledge on the part of the patient and the healthcare professionals (HCPs), it can be better doctor-patient relationships, and it could be governments and doctors better encouraging the patient to be more proactive in taking care of his or her own health.
Preventative medicine, which we certainly need a bigger focus on across Europe, can rely on some or all of the above, so let’s take them one by one, starting with the age-old concept of prevention being better than cure…
One key aim of EAPM stakeholders is to focus on the right preventative measures to ensure reliable and sustainable healthcare for the long-term benefit of patients now and in the future.
Personalised medicine tends to focus a great deal on targeted treatment but there is a need to zoom in, not just on the delivery of the right treatment for the right patient at the right time, but also on the right preventative measures to ensure reliable and sustainable healthcare.
The long-term benefits are both fiscal and humanitarian.
Currently, certainly in Europe, not only are patients failing to receive the best care, there is potential to cause them preventable harm.
It is clear that investment is required in diagnostic approaches, such as the use of IVDs and more screening, certainly in lung cancer.
A recent conference in Sofia (co-organised by EAPM) flagged up many issues on lung-cancer screening, and key to this were questions about how to effectively deal with such a killer disease.
One of the conference’s aims was to put forward a recommendation to be adopted by the EU Council to facilitate the drawing-up of lung-cancer screening guidelines by an Expert Group.
This takes into account the pros-and-cons of screening programmes in other disease areas, including breast, colorectal and cervical cancers.
Europe is looking at risk prediction models to identify patients for screening, plus determination of how many annual screening rounds are required.
But there have been indications that, while we wait, there is a good case for immediate implementation of carefully designed and well-targeted demonstration programmes.
Lung-cancer screening was the top topic of last year’s EAPM Presidency conference, and this follow-up event carried the baton further.
This is one kind of prevention but, with lung-cancer at least, the patient can take the lead in many cases. This is because the majority (85%) of lung cancers in both sexes are caused by smoking.
Lack of exercise and other life-style choices (the aforementioned smoking, alcohol consumption and drug abuse, for example) should arguably be discussed with the younger generation in schools while an easily-available adult course for today citizens would also not be a bad idea.
Meanwhile, EAPM has floated the idea that the concept of having full-gene sequencing, and understanding the consequences, should be raised in older school children (in a similar way to sex education) as well as at universities, within HCP training courses, and with other stakeholders such as patient groups and even mainstream journalists.
Patients are taking more-and-more responsibility for their own healthcare as their knowledge increases, but it’s still not enough. They know more about their lifestyles than a healthcare professional does when it comes to treatment, but there is a serious lack of self-prevention in society.
Only education and information can fix that, and a willingness to listen.
And that certainly goes for our HCPs, too. One of the key elements of the ongoing work of EAPM is an acknowledgement of the need for training of our professionals and an upgrading of HCP-patient communication skills.
To this end, the Alliance has already organised two Summer School (Cascais, Portugal, in 2016 and Bucharest, Romania, in 2017). A further Summer School will take place in Warsaw, Poland, later this year.
Overall it is undeniable that modern technology and the information highway have created new ways to put the patient at the centre of medicine.
Giant leaps in genetics have advanced certain key areas, and have also led, at least in theory, to more patient empowerment.
DNA tests, for example, can throw up in advance the various likelihoods of major illnesses happening in an individual, although of course not everybody wants to know that they may have more chance of getting breast or colon cancer than their neighbour.
Genetics has, as mentioned, opened new doors for patients in the form of personalised medicine. Of course, we are not in a position (at least not yet) to change a person’s genetic make-up to remove the possibility of a specific disease (although certain immunotherapy methods are coming to the fore which better target treatment), but we now have the possibility of a patient undergoing full-gene sequencing.
The price has come down significantly, although HCPs may be reluctant to recommend it for several reasons, and patients may also be reluctant. Both need to know the plusses and minuses.
While it’s clear that gene sequencing has huge advantages for research and prevention, there can be pitfalls for individuals and their families. But this new science is certainly not going away.
With the internet and modern technology, and citizens who deserve the best treatment having contributed to healthcare budgets throughout their working lives, the patient has, and deserves to have, a right to the best care possible.
So, to finish, let’s go back to the beginning…
Preventative care involves education to get HCPs (and patients as much as possible) up-to-speed with fast-moving developments in healthcare, (including an understanding of, and knowledge of the pros-and-cons of full-genome sequencing), improved doctor-patient relationships, better lifestyle choices on the part of the patient and, not least, improved screening programmes.
If we manage all this, we’ll be much further down the road to improving prevention and empowering the EU’s patients.