Patient data and research

For the last ten years I have been working as a clerical assistant to a prominent Dutch legal advisor (specialised in aspects of scientific medical research and privacy) and ethicist.

Since he also published in English, one of my tasks has often been to translate or correct his publications. Over the years I have become familiar with his thinking and terminology – and we all know what familiarity breeds….!

In Brussels, preparations are being made for the new GDPR (General Data Protection Regulation). On behalf of scientists – who by definition are only searching for the facts – he is one of those championing the cause of researchers threatened by a wing-clipping exercise. He has been working on a document he hopes will influence the debate on health data.

We are all supposed to be concerned about our privacy in this age of internet and electronic data, although very, very few people have actually had their ‘data’ misused. I am not referring to identity theft here, but the release of personal (intimate) information about ourselves to people who might know us personally.

My boss is passionate on the subject of allowing scientific medical research to continue making use of data culled from patients. He would not normally use the word ‘statistics’, but that is what it boils down to: meaningful statistical data which stands the test of scientific scrutiny.

Our present health care is based on the interpretation of what patients in the past have experienced. Only then can we correlate things like the incidence of lung cancer and smoking, for example.

More than forty years ago a man I knew personally very well was employed by a firm that amongst other things offered demolition services to customers. Nobody was aware then of the risk of asbestos to health. Indeed I remember staying in a holiday camp where the chalets were entirely constructed of asbestos!

Now scientific medical research has amply demonstrated the danger to health of inhaling asbestos particles. The chap I knew just about reached retirement, but he did die a premature death as a result of the demolition work he had carried out years earlier and his exposure to asbestos dust. His widow has been awarded a claim for compensation which at least softens the blow of losing her husband so early, and the income from his pension. Without that research, we could not establish these facts – it is as simple as that.

My boss makes the point – somewhat forcibly for the first time (for me) that Brussels is erring on the side of defining the legitimate use of patient data as being appropriate only when the need is ‘highest’. That sounds good until you ask the question: who decides that?

We are all aware that the tobacco manufacturers martial a formidable political lobby. Governments end up balancing the need to warn of the dangers versus the revenues tobacco sales generate. It begs the question: if politicians had been allowed to decide if research into the correlation of lung cancer to smoking was allowed or not using (statistical) patient data, would scientists have been able to demonstrate so effectively that smoking tobacco releases carcinogens that dramatically increase the incidence of lung cancer?

Governments today have to be seen to be promoting healthy lifestyles. In reality, the longer we live our ‘healthy’ lives, the more money we eventually cost to maintain by the state (state pensions, long-term geriatric care, etc), and the less revenue is obtained from the substances (tobacco, but also alcohol for example) which effectively curtail our life expectancy!

People (patient) empowerment – the right to decide based on the facts – is crucial. Empowerment only exists when (potential) censorship is taken out of the equation. This elevates the discussion about whether a ‘researcher’ who happens to know us personally can see personal details (like whether we have had a child or not – and that data has already been stripped of the ‘name and address’ details) ultimately to whether or not those governing us (national and ‘federal’ governments)  could be armed with the right to block research into something that might, in their opinion, turn into a ticking time-bomb under their administrations (and finances)!

We do not hold researchers to account; their peers do that, effectively and, if necessary, brutally – based on the data, the facts. We have the responsibility of holding those governing us to account. Politicians alone should not have the monopoly on releasing or disallowing the information we have a right to in order to make informed decisions.

The boy who cried ‘wolf’!

I don’t even know if kids today are taught these stories any more; I suspect they may not.

The moral of the story is that you can end up shouting ‘wolf’ once too often, such that people won’t believe you when there actually is a wolf around.

A man stabbed a couple of people at a London Tube station – and this wouldn’t be 2015 if there wasn’t already cellphone footage circulating on the internet. This very aggressive man apparently shouted ‘this is for Syria’, prompting headlines that this was being treated by the police as a terrorist attack.

Of course I am not in possession of all the facts, but even the police spokesman said on camera that although they weren’t ruling that out, they were not specifically ruling it in either.

In the good old days, an attack was only officially classified as such once an organisation had claimed credit for it – often authenticating the claim by using previously agreed codewords. We didn’t have the internet then, and the so-called Islamic State seem to choose their moments for claiming credit for an attack. Quite possibly they are happy to see us running around chasing our tails while we try and work it out.

Back to the guy in the underground station. The footage we have seen showed a guy that was not cool and calculating, but very wound up. By now the police will know if that was due to alcohol, drugs or some long-standing mental problem. Muslim eye witnesses got the impression they guy was not a Muslim himself. To put it as diplomatically as I can, it sure looked as if the guy was at the very least unbalanced.

Which brings us to the next point: when is a terrorist attack not a terrorist attack? I honestly didn’t think world leaders were simply using the definition of anything that strikes terror into the rest of us. If that were true, many would ask for spiders to be included in that list!

Countries maintain lists of groups that are proscribed. Hell’s Angels might strike the fear of God in you but they are not defined as terrorists. The so-called Islamic State however is. But even then, it used to be that such a group needed to have orchestrated an attack in order for it to be called as such. I’m sure during the Troubles that local attacks took place by sympathisers who were not members of, or instructed by, the IRA. That would not have warranted the headline ‘Terror attack’ back then, probably something more like ‘Partisan attack’.

In short, are we in Britain so keen to climb on the bandwagon of terrorist attacks (again) that we need to headline this deranged chap’s violence as a terrorist attack? Would that mitigate his actions actually? No!

At the end of the day, it is the person that pulls the trigger, detonates a bomb, or forces a pilot to crash a plane who is personally responsible for his or her actions. Motivation or orchestration by others does not absolve them. I have no difficulty in also trying to eradicate the organisations that order terrorism on a mass scale, and stifle or counteract their ‘teaching’. Unfortunately ‘we’ sometimes have more scruples than is good for our rhetoric. Some former IRA ‘leaders’ are now welcomed as elected representatives, and are even greeted politely by members of the Royal Family. The callous murder of Lord Mountbatten, for example, is all but forgotten outside his family, and on camera at least, the Prince of Wales recently shook hands with one of those probably involved in some way at the time in ordering the assassination.

Whilst ‘terrorism’ is up there at the top of the list of things we condemn, my vote goes to ‘political expediency’ as a qualifying candidate.

Jeremy Corbyn is right – and wrong!

In the debate on whether the UK should assist in the bombing of so-called Islamic State targets in Syria, Jeremy Corbyn has probably rightly pointed out that one of the consequences will be that terrorist attacks will also focus on the UK. If such an attack occurs, he will be the first to shout “I told you so!” or words to that effect. At that moment his proclaimed pacifist stance will be overshadowed by events.

However he is wrong when he uses the argument of reprisals to advocate no military action. I can forgive younger people only recalling terrorism instigated by al-Qaida, but some of us remember vividly the terrorism of the IRA campaign.

I worked in London in the mid seventies and commuted in from the south coast. The IRA used bombs placed in litter bins on central London station platforms at that time. Did I stay at home and not go to work because of that risk? No! Did I think that Westminster should have given way to the Republicans in order to remove the threat of bombs? No.

As a nation, Britain was dominated by ‘the troubles’ forty years ago. Most of the horror took place in (Northern) Ireland, but the extension of terrorist activities onto the ‘mainland’ of Britain was a fact for a while.

Should we give way to terrorists? No! Should we seek them out and neutralise them? Yes, if possible.

I cannot help mentioning another sorry parallel between now and then: the rest of the world saw ‘the troubles’ as Roman Catholics against Protestants, just as now a lot of people are quick to condemn Muslims for so-called IS terrorism. The Bible no more defended the IRA’s tactics of killing and maiming than the Koran does for the supporters of IS. Both religions have waged wars in the past, and both are also grounded in non(-essential) violence.

We need to choose our motives wisely – the memory of ‘WMD’ is still fresh in our minds. That led us into a chain of military action which, according to many observers, has left the Middle East as unstable as it was when we started.

France’s declaration of war on the so-called Islamic State caliphate may have been premature – we have no recent precedent in dealing with a caliphate –  but we do need to stand shoulder to shoulder with our NATO allies here. Hiding behind Jeremy Corbyn’s skirt’s will not do.

My father was a pacifist. A conscientious objector in the second world war, on religious grounds. But I will never forget when I was being bullied on my way to junior school, it was my father that told me to stand up to them and fight back! I never did quite reconcile that attitude.

Home Office criticised over £830m ‘failed’ borders scheme

This first post refers to the story on the BBC website that the e-borders scheme, first started as a project in 2006, has failed to deliver 9 years on.

Airports are reasonably good at registering entrants to the UK, but ports less so.

What really amazes me is the comment from immigration minister James Brokenshire: “The Border Systems Portfolio, in conjunction with a range of programmes across security and law enforcement, is working effectively to keep our citizens safe and our country secure.”

I’m sorry, but words like ‘portfolio’ and ‘a range of programmes’ do not reassure me one little bit! It sounds too much like papering over the cracks.

One of the roots of the problem is the inability of governments (not only in the UK – this applies to other countries too, such as the Netherlands) of not getting IT projects right!

I realise that 200 million journeys a year, involving 600 air, ferry and rail carriers and 30 government agencies, is a giant IT nightmare. However we are talking about the government here – they have the resources to spend on getting this right. When companies like Google – to name but one – are able to cull, sort and store information in order to send back to us what they think we might be interested in (we = users all over the world!), why cannot governments think big enough and create the systems they need?

To hide the inefficiencies of the systems they do have, they then claim that taken as a whole, the complete system works. It seems we really do suffer from an overload of ‘spin’ these days – something I know will come up in this blog again and again!

Who am I?

I’m a Brit. I moved abroad 35 years ago. I have lived in Denmark, Belgium and France, but most of the time, in the Netherlands.

Why this blog?

So often there are news items I think have not been expanded on enough. Some are even downright misleading! So, what the heck – let’s add some of my own comments and see if anyone agrees!

Explanation of handles!

The blog is called “expatter” – a combination of ex-pat and patter – enough said?

My handle is “gotthepatter”, as in ‘got the patter’. Again, time will tell if others think this is just patter!