Can you control use of your medical data?
Your medical data is being used without your permission in ways that will undermine your health — it just is — and there is nothing you can do about either the theft of the data or the nature of the misuse of it. In fact, your right to understand and influence your own health is disappearing; your health will be determined elsewhere by criteria you have zero control over. For you own good, of course!
The labels attached to this health governance putsch are either philanthropic and charitable, as in the Gates Foundation, or are emergency responses to perceived crises, responding to fears often stoked by the governments concerned. By definition there is no question of democratic oversight, not even retrospectively. These are autocratic moves towards global control over populations.
I don’t want to wade into the controversies roiling around what is being reported about cases and deaths, false positives and sheer fantasy in the current pandemic. One fact you may not have heard: how many flu deaths in the UK this winter season? Zero, zilch, not one. The game involves the mass generation of fear and hysteria.
Medical data is anonymised
I tried, some years ago now, to interest anybody in the policy and media space in a proposition about the NHS. My concern at the time was that the NHS seemed to need exponentially more funding because of demand.
My line of argument was this. The NHS is a national service and almost all UK citizens have been patients at some point. Almost all are registered with a GP, most have been to hospital for some reason or other. So “demand” consists entirely of people who have been seen and treated coming back again. It is not really a feature of a population that can be considered separately from the treatment regimes. It is an outcome of the system every bit as much as it is an input.
Of course, the NHS is extremely fragmented. You can have diabetes and/or you can have skin cancer: they are treated entirely separately. If you have a hypothesis (and I can generate one) that the treatment of diabetes leads to more skin cancer, you will never know, even though you are sitting one a complete dataset that would make it easy to see if there was a correlation.
Correlation is not causation. There is a classic cartoon where a stick person says they learnt that on a course. Their interlocutor say that the course must have made a difference then. “Maybe”!
Since I have a cybernetic bent, I investigated what it would take to find out about such correlations, and the answer was basically that such analysis was not allowed and only a few expert academics knew how to crack the anonymisation so that individuals’ health history could be pieced together. There was an almost unsurmountable barrier to understand the effect of the NHS on health, or if you like on all-cause mortality, as distinct from disease outcomes.
The reasons put forward for this self-imposed blindness were to do with patient confidentiality, and I can understand that. I knew a hugely respected surgeon working for a Nuffield hospital. At the time it was possible to sign a form at the GP office to say that you did not want your anonymised data to be used in any analyses. My friend said to make sure I signed it because any use the data was put to would not be in my interest. Ten years ago.
I wrote in a previous blog about the QOF system of bribing doctors to get you onto statins, and other similar measures. The last I heard £30bn over fifteen years made no detectable difference to population outcomes. A finding that was not broadcast and QOF is still in place, working its damage.
To return to my concern about the NHS, we do not know, and are not likely ever to know, what difference that vast amount of money has made to coverall health. We know the dietary guidelines kill people at scale. We know that hospital food is some of the worst you will ever experience. The proposition that particular silos within the NHS cause higher mortality in other silos I treat as “more likely than not”. In the US where many doctors get in on the act of prescribing for the same patient, the first thing a real doctor does with a new patient is to throw out most of their pills.
A new breed
It is so obvious that the NHS is sitting on a bank of data that other people will pay billions for if they cannot simply steal it. It doesn’t matter that there are laws in place to prevent that use, the prize is such that a way will be found. The remaining question is what the data will be used for.
There is a new breed of corporate with less than zero ethical concern. Facebook as we discussed is happy to destroy democracy at the behest of fascists. Google is producing shockingly racist AI products using learning sets that no minority would validate. And Palantir is more military and secretive: they seem to be at the front of the queue for the Johnson government in the person of Matt Hancock to use our data without anyone’s permission to do unspecified things.
At the same time the rumour mill says that the Chinese are militarising genetic information, which presumably means the Pentagon are involved. Targeted viruses or worse. Data that could have been used to get much better value out of NHS spend is instead used to work on the vulnerabilities of the vulnerable.
“This is pharmaceutical-driven, biosecurity agenda that will enslave the human race and plunge us into a dystopian nightmare, where apocalyptical forces of ignorance and greed will be running our lives, and ruining our children” Robert Kennedy Jr
The more health moves into a consumer domain the more we will trip over side effects that demonstrate the gap between nominal purpose and outcomes in the real world. You may recall a secret US base in the Middle East that wasn’t even supposed to be there but which was mapped in detail by the signals from servicemen’s fitness watches. If one of those servicemen had leaked that data, rather than it just being publicly available, he would have been tried for treason.
Ethics-washing
I was a member of the public on an ethics consultation run by the Google company Deep Mind, in London. A few people were given lunch and some vouchers to take part. Some professional facilitators ran a session to get answers on some questions the Deep Mind staff had put forward. It was very much a token effort, and the facilitators could easily have written the outputs without us there.
I remember too a County Council consultation into the local school system when my children were directly affected. Should they move from a successful middle school system to a conventional primary/secondary system? I listened to an evening of people speaking quite passionately about the benefits of the then current system. I spoke myself. Not one person I heard was in favour of the proposed change, so of course it went ahead as planned. For the record, the arguments put forward for the change were about more effective use of existing buildings! You have to consult but you don’t have to listen. Parents were interested in effective education and their children’s wellbeing and the County Council were interested in their budget.
We know about green-washing and all sorts of makeovers designed to convince us that black is white, that corporate interest is aligned with our interest. Why would any corporation say anything else, even if it is never true?
When we speak of our medical data this could hardly be more sensitive. I don’t want to be consulted; I want control. If I say you can’t see my data, you cannot use it in anonymised form, you cannot include it in your statistics, I need to be able to enforce that position. It is unalienably my data, about me.
There is a piece here about the ownership of knowledge. If a pharmaceutical company say they are developing a world-saving vaccine or drug, and that it is based on genetic information about a population it is going to be almost impossible to say that they must not do that. But they are judge and jury in their own case, they control the narrative that makes their case look favourable. The various regulators were captured long ago. This is why I need to be able to say no, not a reason for over-ruling my objections.
What is the chance that I can understand a pharmaceutical research process well enough to show that harm that letting a corporation use my data has caused me or others? It is virtually impossible for me to overturn all the ownership of knowledge and shown what has been done. I saw a list of twenty bodies that people who have been damaged by ECT have turned to for redress, and not one is prepared to stand up for these damaged patients. The mental health professionals define damage, define the success of treatment, define the ethics of patient involvement, define the law. So I need to be able to say no, just no. I need to be able to say to the Gates Foundation “I don’t like the way you do business — get out!”
Political control
I just read a sci-fi novel of 1989: Sheri Tepper’s Grass. In it there is a galactic plague that looks as if it will wipe out all humans eventually. There is even a religious sect trying to hasten the end. Control of the potential cure becomes as political as it gets, a dirty war all of its own. We know about the issues. We know that major threats are the site of power grabs. We know who counts and who will never count.
The current pandemic shows this is only about money and power, never about health. The scramble to produce a vaccine that works shows how much money is at stake. Vaccines can be sold before they exist for arbitrary amounts of money. And possibly the dire reputation of big pharma can be rescued at the same time.
By contrast it seems that more straightforward ways of staying healthy have more to recommend them than the medical routes. Vitamin D status appears to control the risk of infection to a very high degree and withing three weeks you can change your metabolic health status for an even higher degree of protection. These things are known about, not really disputed but don’t make anyone any money so they are not in the limelight. Sensible, essentially free, routes to health in difficult times are just not sexy.
To see how this plays in the public health arena, consider cows’ milk, a component of most people’s diets. The last major herd of milk cows in the UK has recently moved to be entirely housed year round. So most supermarket milk is produced from cows that never go outside. Who cares? Well the move halves the amount of vitamin D in the milk, and for many people that is the major dietary source either in milk or in cheese. We can have a major negative factor introduced into the pandemic and no-one even makes the connection.
So there is the logic laid bare. Corporations steal your health data. The way they will use it is, at best, to develop expensive products for your consumption and to frighten you into using them. Public Health, that could use the same data to keep elements of the national diet, err, healthy for the public are nowhere. At worst corporations will use that data to make you sick or to kill you without anyone making the connection. The Standard American Diet has resulted in 88% of the population being metabolically unhealthy and vulnerable to the pandemic. The new guidelines in the US do not even consider that vast body of research but only talk to the 12% of the population who are still OK!
