#EAPM: ‘An investment in knowledge pays the best interest’

…so said Benjamin Franklin. But in these days of the information superhighway, Big Data and even ‘fake news’ it’s very hard for most citizens to separate the wheat from the chaff even in their daily lives - to decide what actually is knowledge, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.

When being bombarded by TV, radio, Twitter, Facebook and so on we all sometimes wonder who or what to believe. We ask ourselves what we should share with others, and which decision paths we should follow.

It’s certainly not getting any easier, as recent stories emerging from The White House and the Brexit referendum of last summer have shown us all too well. In fact, it’s possibly getting worse.

Pretty much everyone has heard the phrase ‘a little knowledge is a dangerous thing’. This is likely to have been inspired by the words written by the celebrated poet and scribe Alexander Pope. Here are the relevant lines from his 1709 An Essay in Criticism in which he used the phrase ‘A little learning’ thus:

“A little learning is a dangerous thing;
drink deep, or taste not the Pierian spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.”

The phrase is not knocking knowledge per se, it actually means that having just a few facts, rather than ALL of the relevant ones, can mislead people into thinking that they are more expert in a particular subject, or on a particular topic, than they really are.

So, in this fast-moving world of personalised (or precision) medicine, with incredible breakthroughs in genetic mapping and super-efficient diagnostic tools, broad-based screening programmes in certain disease areas, recommendations on the same, and information readily available on the internet, how much knowledge do patients want about their own conditions?

And how much do some health-care professionals (HCPs) actually believe patients can handle? And what about the patient’s close family - do they need to know all the facts, or do they need to be protected?

One could argue that it has long been the norm for governments, presidential candidates or, indeed, campaigners on either side of a complex referendum to ‘dumb down’ issues to make it easier for ‘the masses’ to understand them (or, to be more cynical, to misunderstand them in certain cases).

That’s just the way it is, but is this permissible in the arena of health? Do HCPs of whatever nature have the right to be patronizing in certain cases when believing that a patient may not be able to handle all the facts, say, after a prostate PSA test or a breast-cancer screening? Or even a full gene sequencing exercise that could show up genetically transferred diseases?

It’s a moral minefield, but for their part organizations such as the Brussels-based EAPM believe that the patient should be empowered, play a key role in the decision making about his or her condition and, therefore, have all the necessary knowledge of their condition, potential treatments, clinical trial options and to be briefed on the best drugs available to them while taking into account any possible or probable side-effects, their work and lifestyle, and their own perceptions of what constitutes ‘quality of life’.

Certainly, many people would not want to run full DNA sequencing. In certain cases, a healthy patient would be able to learn about the likelihood that they would eventually develop one or more diseases, perhaps through heredity (which obviously affects close family members, too).

Would they really want to spend the rest of their lives worrying about this? And would it lead to over-treatment or even totally unnecessary treatment, at a high cost to them emotionally and at a high cost to society in general?

The above are some of the arguments put up against population-based screening programmes, as well as somewhat patronizingly against letting the patient know everything there is to know.

Conversely, though, a woman whose grandmother, mother or sister has developed a particular form of breast cancer, or a man whose father and uncle both suffered from prostate cancer, may very well wish to gain all the knowledge available about the likelihood of she or he developing the diseases too.

In these circumstances the phrase ‘prevention is better than cure’ certainly rings true, quite apart from the moral issue of empowering patients and giving them the choice.

It is a fact that patients are, as we would expect from all the information sources now available, more knowledgable than they have ever been about health. However, the word ‘cyberchondriac’ has been coined to describe a person who compulsively searches the web for information about real or imagined symptoms.

They are clearly not medical experts - most of us are not. But they are certainly experts when it comes to what constitutes their own daily lives.

In the end, we can only arm ourselves with the facts, then it’s all about choice. Surely the patient should be the one to choose.

To register for our upcoming Presidency Conference on 'Innovation and Screening: The Future', please click here.

To see the agenda 'Innovation and Screening: The Future', please click here.

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