Decernimus Ergo Summus: Citizen’s Assemblies
Recap
When it comes to assessing the benefits of drugs randomised controlled trials (RCTs) are over-rated, rarely if ever objective, and easily gamed. If you don’t know what you are doing to begin with, RCTs won’t find an answer and in practice will make the situation worse. The operationalism of RCTs helped tee up a Neo-Medicalism. Neo-liberalism is another word for this.
For the full background see Something Happened to Science, and Neo-medicalism .
Judgement Sidelined
This is the state of affairs for the supposed strong point of RCTs – rating a treatment’s benefits. When it comes to assessing the adverse effects of treatment, things are much much worse. The exclusive focus of RCTs on a primary outcome (the benefit) means that the 99 other effects every drug has – some of which may be commoner than the primary outcome – are neglected and vanish.
The sexual side effects of SSRI antidepressants demonstrate this. Within 30 minutes of taking an SSRI, there is some degree of genital change in close to 100% of people but when the drugs came on the market, their labels reported sexual dysfunction as happening in 5% of people taking an SSRI.
The disappearance of something as obvious as sex can happen innocently in part; investigators spend so much ticking the boxes linked to benefits, they may only have minutes to ask about problems and are unlikely to register as an adverse event something they have been primed to think of as a feature of the illness – depression affects sex.
But something that would be disastrous for marketing purposes, severe sexual dysfunction had been seen in over 50% of healthy volunteers in preclinical trials. One of things about testing a drug in healthy volunteers first is that a company has years to work out how to “manage” the issue. It can be as blunt as telling investigators in later patient trials not to ask about sex.
But then to compound the problem, the academic glove puppets on company trials in “their” articles apply statistical significance tests and/or confidence intervals to these adverse effects and claim there is nothing significant here – so the problem isn’t happening or isn’t happening with any degree of frequency. This isn’t just garbage in and garbage out of statistical tests, this is garbage, lies and fraud in and garbage, lies and fraud out.
The Myth of the Rare Side-Effect
Once a drug is on the market, there is inevitably then a mismatch between what the trials published in the NEJFM or other Fake News outlets show and our experience taking or prescribing these drugs. In response to this mismatch, we are told there are indeed rare side effects of treatment that RCTs don’t pick up and for this we need post-marketing surveillance.
Rare side effects are not the problem. The pressing problem is that because of RCTs we are now missing the most common effects of drugs, ones like dependence on and withdrawal from SSRI drugs that now affect roughly 5 million people in the UK, 30 million in the US, and 50 million across Europe. This is a public health problem on a grand scale – and the problem was obvious from healthy volunteer studies done even before the drugs came on the market.
Sixty years ago, the problems new drugs caused were picked up within a year or two of coming into use. The problem now is that common effects of drugs are denied 20 or 30 years after the launch of drugs like the SSRIs, leukotriene antagonists, dopamine agonists, or fluoroquinolone antibiotics.
This is no accident. Companies have worked out how to disconnect us and our doctors from the harms their drugs can cause. Central to these efforts is the RCT. If it hasn’t been shown to happen in an RCT then it either isn’t happening or we don’t know that it is happening. This is a procedural, a bureaucratic, rather than a medical answer.
Every week of the year, I get emails from people making a good case that their relative or friend was injured or killed by treatment but running into a response from the health service they were treated in that the doctors concerned kept to the Guidelines. This is bureaucracy. This is not medicine.
Things have got so bad that doctors with a patient right in front of them who has turned blue and grown feathers, after being given a drug and whose problem improves after the drug is removed, will still not say the drug has caused the problem but will defer to a bureaucrat in FDA or EMA or MHRA who is there because they don’t like meeting people, who may have briefly practiced medicine, orthopaedics perhaps when the problem is being produced by an oral contraceptive. The bureaucrat turns to the RCTs and doesn’t find the problem there – although it might there coded in a way that fools most people, or the report he reads says there is nothing statistically significant there. The bureaucrat says there is no evidence this drug causes this problem and doctors tell patients the problem is in their mind.
This turns medicine upside down. Its supposed to be doctors telling bureaucrats the problems a drug causes.
Walter Raleigh
And doctors do appear to report to bureaucrats, using MedWatch in the US or Yellow Cards in Britain and other reporting systems elsewhere. But crucially the patients name, Walter Raleigh, doesn’t appear on the form.
So if I David Healy am having sexual difficulties after an SSRI and try to take a lawsuit against a company or doctor or take my case to the media, and say I know the regulators have thousands of these cases on file, the company response, or their lawyers response in Court, is “Ah but, this is hearsay”. These are anonymous reports. Nobody can be brought into Court to be cross-examined and so because of Walter Raleigh, the regulator might have a million pieces of paper on file, but this is all they are – pieces of paper.
This is at least semi-deliberate on the part of the system.
When reports go to companies, they are legally obliged to track down the patient and their medical record and cross-examine them. They do this in an attempt to find the ingrown toenail at the age of 2 they can point everything on. Despite their best efforts company reviewers often end up unable to explain the problem away and have to conclude their drug has caused it and list the problem in the label.
The problem then appears in a section of the label called Other Reports or Post-marketing Experience, which is small print and comes a long way after the section of the label that lists the adverse events noted in RCTs and most laughably lists their frequency. It’s the RCT section doctors read as offering the best evidence. They assume anything listed in Other Reports are things that have been reported to companies from flat-earthers and other whackos and this wonderfully transparent company is listing these events for the sake of completeness.
Regulators in contrast never follow you up or make an effort to determine if the drug has caused the problem. You will not be surprised to hear that companies are doing their damnedest to get doctors to report to regulators rather than to them. To many observers this looks like a step in the direction of transparency. It’s just the opposite.
The Vanishing
But the biggest problem of all is that both we and our doctors have lost confidence in our own judgement – and this is the key condition for the emergence of cults.
The issues of deciding whether a treatment is worth it or not, or whether it is causing problems or not and then deciding whether to trade possible benefits against inevitable hazards are as delicate as the challenge to teenagers grappling with how to shape an identity in our very messed up world. RCTs trample across these issues and rather than support nuance and give time for reflection create a scenario for doctors and the rest of us in which we have to Choose – to be part of the damned or the saved, the rational or the woolly, male or female – and we have to choose right now.
These are the conditions that lead to the creation of cults. From the psychoanalytic cult from 1920 to 1960, to the Nazis in the 1940s, the Children of God and a plethora of religious cults in the 1960s, and now medical cults from EBM and Vaccine cults to an emerging cult affecting adolescent girls who are being bounced into gender transitioning. In all these cases, the cult-masters seek to abolish individual judgement.
Those who don’t sign up to the message are branded unbelievers, irrational, or phobics. Their resistance to joining becomes evidence that the cult’s members are on the right track. Any internal doubts a member of the cult has are branded neurosis, or internal transphobia, or blamed on scaremongerers. If you want to spot a cult look for the people calling others phobic or irrational or neurotic – as those riding shotgun on the vaccine stagecoach do.
One of the features of cults until recently is that they were a minority interest. Christianity is not a cult but the Christian and other religious cults of the 1960s circling around it were. Psychodynamic psychology is not a cult, but psychoanalysis became one. The Nazis came close to changing the game. While only a minority of Germans were members of the party close to all became de facto members. Vaccines are not a cult, but the current mandatory vaccine scheme come very close to making us all Germans now.
A growing body of the “truths” that both the highest echelons of medicine and medical rank and file now endorse are Fake. Even more important is that hemmed in by Guidelines, and a risk of referral to regulatory bodies, it is understood that physicians will not now exercise their own judgement or support a patient in doing so.
Saved by Drug Wrecks
This is why Drug Wrecks are so important. One of the key differences between justice and bureaucracy lies in establishing Facts. Bureaucrats don’t do this. Justice has to. If those of us working in health don’t take a stand on the facts, we are working in a health system and collecting our pay rather than delivering Healthcare.
In the case of Drug Wrecks, the details that need assembling into facts are right in front of our noses. Our conversations with family and friends are a first step in doing this. The conversation with a doctor or another person in the health system is a potential next step – can we get them to Care. Can we get the jury – us and them – to reach a common verdict, a diagnosis, that moves things forward?
Decernimus Ergo Summus
We need to replace Credo Ergo Sum and Cogito Ergo Sum with Decernimus Ergo Summus – it’s in working together to establish facts, that we are.
When we have a doctor blow us off by telling us an enduring sexual dysfunction after treatment is all in our minds, both we and s/he come out of the encounter reduced.
In terms of a larger politics, these conversations are a prototype for Citizens’ Assemblies, which have come to the fore recently as a means of tackling a series of seemingly intractable issues such as those linked to climate change or inequality or child abuse. These assemblies seem to have some potential to help us find ways of bridging rather than deepening divisions.
What is happening here is a replacing of a hierarchy with a democracy. With a hierarchy, the moral order was imposed from the top-down. This was lost with the execution of kings and we have been seeking ever since to find a way to restore a moral order. There has been a reluctance to entertain the idea of an order that arises from the bottom up.
Athens had citizens assemblies. But the citizens were all property holding men. This was androcracy rather than democracy, just as the hierarchy was de facto a patriarchy.
Unlike Germans in the 1940s, faced now with a falling life expectancies and Drug Wrecks rapidly becoming our leading cause of death and disability, we have no opportunities to emigrate. The new bureaucratic medicine is a global phenomenon. No armies are going to arrive from elsewhere to save us. The unfortunate among us will get on the train as we are told. Others will keep their heads down. Some will take advantage of the situation.
We need a new moral order arising from the bottom up. Incorporating women is critical to any idea about how such a moral order might arise. The desperate emails I get from people wondering how to get justice for a loved one who has been killed or injured come from women, not men. The people who take on doctors and the system for the sake of a loved one are women. Pharma already know this – it leads them to target women as a way to get drugs into men, children and older people.
One example of how a citizen’s assembly might work would be the creation of pregnancy registries where every woman getting pregnant would log every med taken, every health issue and perhaps many other things. To this would be added all outcomes in respect of the child, perhaps out to their teenage years.
When it comes to interpreting what the data mean, the key people at the table would be women – ordinary women. Sure, it would help to have some experts too and industry should also have a seat the table – we need people who will do their utmost to explain away possible links to a med or vaccine. At the end of the day though, the purpose of the exercise is to leave it to ordinary women in the light of genuine data to decide what to take or what to do when pregnant, figuring that they are best placed to decide what hazards are acceptable to risk and what aren’t.
It Takes a Community
It takes a community to sustain complexity. Healthcare used to be a community, albeit a rather top-down one. Now it has no citizens. When we control medical techniques, we can have healthcare. When they control us, we have health services – a bureaucracy. This is what we now have – a system that doesn’t trust its people.
Upholding facts is a precondition for sanity and citizenship as Tiananmen Square shows. Facts lead to justice. The good thing about the horror of Drug Wrecks is that it is still in our hands to establish the facts. No doctors are trained in how to establish these facts. No-one is. But the facts can be readily established and a failure to engage diminishes each and every one of us that is party to that failure.
Key to establishing facts are our names. Whether as doctors or patients we need to put our names to the events on a drug we are seeking to establish. We need to be willing to come into court to be cross-examined if need be – a pharmaceutical company might threaten this but would never want to carry it through.
Our names are key to restoring HealthCare. If a doctor and a person affected both put their names to a report indicating they have considered the issue in detail, this is the essential act of solidarity that can restore the moral order we have now lost. But it won’t be easy. RxISK was set up to build RxISK Maps of doctors and patients willing to do this but it has proven almost impossible to get it to happen – other than in the case of a small number of people with PSSD.
RxISK partly needs a revamp to make it clear we are anything but anti-medical but this doesn’t account for why so many have been so reluctant to approach doctors with a request to consider their adverse effect with them. It doesn’t account for doctors reluctance to co-operate with something that in my opinion is their single best chance for staying in business.
One more thing needs doing. We need to designate RCTs, at least when it comes to adverse events, as hearsay. Unless the people affected can be brought into the assembly to be cross-examined, the numbers purporting to represent their experience can make no contribution to establishing facts.
Last Night
Who knows what Walter Raleigh would have made of all this. Below is his epitaph, penned the night before his execution. He lived in a time when it was impossible not to believe in the hierarchy. Who knows what he might have written now.
Even such is time that takes in trust
Our youth our joys our all we have
And pays us with but age and dust
Who in the dark and silent grave
When we have wandered all our ways
Shuts up the story of our days
But from this earth this grave this dust
My God shall raise me up I trust
Your Raleiging calls are a tribute to all those who have lost their lives. As Enough doctors are not going to help to sort out this mess by filing a report – what about asking people who contact you or read the blog ,to request their medical notes and send you a copy? Also a small citizens group might be set up together with the clinicians at Rxisk to look for any common facts which which might be revealed in the history. , There is no obligation to give a reason for requesting medical notes mainly a request just goes to the practice manager. There may be a charge but it’s worth it.
Would it be useful to include some reports by people who have had a good experience? That might counter the anti- medicine accusation somewhat.
‘There seems to be a strong belief in medicine that medical professionals know best. Medical professionals seem to ignore human knowledge external to medicine. Centuries of other knowledge is ignored as if it does not exist. Medical knowledge is consequently populated by metaphorical reinvented square and triangular wheels [but only patients have to ride on them].’
‘A lawyer might explain that Courts accept an expert’s opinion to decide disputed propositions. This is when a Court [in legal theory] lacks the expertise of the expert and so expert opinion evidence is admitted. This is an exception to the general rule that only witnesses of fact can give evidence.’
https://www.bmj.com/content/366/bmj.l4606/rapid-responses
23 July 2019
Clifford G Miller
Lawyer with science background
Distinguishing opinion from evidence in guidelines
https://www.bmj.com/content/366/bmj.l4606
Using experts as a source of evidence has several problems and may seem at odds with evidence based medicine.
“Ah but, this is hearsay” …
A naive question no doubt, but what IS it that motivates so many academic glove puppets to dance to the fraudulent tune.
Is it money,
is it hopes of rising to greater academic heights,
or are they just so stupid that they actually believe what their handlers tell them to say?
Surely they realise that in the end, however long it takes, fraud will be seen as such. Is it therefore total lack of conscience? If so, when did the conscience disappear? Was it in medical school where professional arrogance became the norm? Is this just the way our broken society functions now. Honour is nothing, so-called ‘wrong doing’ doesn’t count for a hill of beans. Surely in medicine, it wasn’t always like this. People had a calling to save lives, to be trusted, respected. Now doctors are trusted less than estate agents or politicians. One very rarely today hears someone in the community talking about their wonderful GP. Whereas in 1979, the opposite was true. So, there’s been a massive turnaround in 40 or so years. Is this entirely due to the birth of RCTs?
From The BMJ – Article Redefining the ‘E’ in EBM
“By the law of Garbage In Garbage Out, whatever we produce in our reviews will be systematically assembled and synthesised garbage with a nice Cochrane logo on it. One major problem is our ignorance of the presence of garbage, as its invisibility makes its distortions credible and impossible to check. This is how some of us happily signed off a Cochrane review with findings which had been completely and invisibly subverted”
https://www.researchgate.net/profile/Lars_Jorgensen15/publication/323666903_Redefining_the_'E'_in_EBM/links/5ab89ed9a6fdcc46d3b890f2/Redefining-the-E-in-EBM.pdf
Putting this another way, systematic reviews/meta-analyses are the top level of ways of covering up fundamental problems – which is of having unreliable evidence and evidence which might be reliable but we cannot really tell. RCTs do not deliver reliable evidence despite claims about randomisation creating a theoretical “gold standard”. So layers are added over the top of the problem and people are being told these help.
RCTs in practice they do not provide evidence we can be confident is reliable regardless of how much BS is smeared over the top to claim they are the theoretically most astounding source of evidence since the radiance from the previous “Gold Standard” – Exodus 34:29 “… when Moses came down Mount Sinai carrying the two stone tablets inscribed with the terms of the covenant, he wasn’t aware that his face had become radiant because he had spoken to the LORD.”
Even if RCT evidence were to be reliable it is too vague to provide certainty that a treatment will be successful in any particular patient.
The solution to that? Another layer. The Number Needed to Treat. When its a big number for one success that is a magnified problem – compounded by not merely a failure to report adverse events but regulators who don’t and who publish safety analyses which claim safety when not true.
The top layer is the systematic review. But it turns out they have their own problems too – in particular it is more like cooking than science. The are based on poor quality evidence and end up aggregating poor quality evidence into a poor quality review. Judgement is applied in deciding what adjustments are needed for which variables. These adjustments are not made plain in the published reviews nor how they are calculated nor how they are applied – so no one can tell or check for themselves. In addition all is buried under such complex layers of statistics the average medic has no chance of making sense of any of it in any event.
Michael P. Hengartner, PhD Retweeted
Rob Purssey @RPurssey 1h
If you’re even vaguely interested in psychiatric research done properly, read this superb tweet-torial thoroughly!
https://twitter.com/HengartnerMP/status/1159047998069977088
https://twitter.com/HengartnerMP
Annie, it is interesting to see the “Hamilton Depression Scale” [HDS].
“The Hamilton Depression Rating Scale (HAM-D) has proven useful for many years as a way of determining a patient’s level of depression before, during, and after treatment. It should be administered by a clinician experienced in working with psychiatric patients.”
https://www.psychcongress.com/hamilton-depression-rating-scale-ham-d
And yet the debate about whether SSRI’s do anything appears to continue.
So if the HDS was a useful indication there should be no debate. But because there is a debate the HDS seems to be like believing in Saints and miracles and Santa Claus. Clearly, its existence and use is testimony to a fervent belief in it.
So we are expected to believe that because there is a fancy name for a “scale” that it means anything and that because a trained medical professional comes up with a number based on applying the scale that is reliable science.
It seems to be pseudo science which the medical professions construct to give a veneer of scientific respectability to treatment practice and to convince the rest of us they have scientific evidence to prove what in some cases may be possibly worse than quackery.
There is also a significant problem testing alleged pharmaceutically effective products against placebo. They should be tested against placebo and against no treatment.
Whilst the most recent Cochrane systematic review finds almost no evidence to support the view that the placebo effect is a real effect [but it does find some!] there is literature recording the placebo effect as being a real effect with real beneficial outcomes. Well, we already know that systematic reviews are unreliable and a sticking plaster over the problem that RCTs are not reliable.
So here is the problem with placebo trials. If a supposed “gold standard” but typically unreliable RCT is based on a placebo trial, showing a marginal effectiveness [let’s say a Number Needed to Treat of 100] what if the placebo has a Number Needed to Treat of 2. If that were the case a physician should always opt for placebo as the first choice of treatment – and with no adverse effects.
But because trials do not include no treatment there is no placebo quotient to compare efficacy and effectiveness of the alleged drug treatment against placebo.
In other words, placebo is always assumed to be the null hypothesis whereas no treatment is.
Not a bad start: ‘The Gospel Coalition and Vaccines: a response to Joe Carter by Jordan Wilson:
https://newcitytimes.com/news/story/the-gospel-coalition-vaccines-a-response-to-joe-carter
Novartis CEO: ‘We tried to do the right things’ in FDA data scandal
By Damian Garde @damiangarde
August 7, 2019
https://www.statnews.com/2019/08/07/novartis-ceo-we-tried-to-do-the-right-things-in-fda-data-scandal/?
Novartis CEO Vas Narasimhan on Wednesday defended his company’s decision to wait three months to tell authorities about falsified data submitted to the Food and Drug Administration, saying the company “tried to do the right things” in the process.
He also said Novartis (NVS) was now “in the process of exiting” a small number of scientists at AveXis, Novartis’s gene therapy business, who were “involved in these data inaccuracies.”
…a company that has faced allegations of bribery and charges of illegal marketing in recent years.
“We are committed to rebuild trust with society, deeply, for me personally all the way through the leadership team and the broader organization,” Narasimhan said on the conference call. “It’s a long road, and sometimes it’s bumpy.”
Novartis faces another crisis. And for CEO Vas Narasimhan, this time is different
https://www.statnews.com/2019/08/07/novartis-faces-another-crisis-and-for-ceo-vas-narasimhan-this-time-is-different/?
Novartis CEO Vas Narasimhan began his tenure with an inherited scandal. Now he’s got one all his own.
The revelation on Tuesday that AveXis, Novartis’s gene therapy division, submitted falsified data to the Food and Drug Administration is at the very least a blemish on the brief reign of Narasimhan, a rising figure who took over in early 2018 with a promise to change the culture at the Swiss drug maker. But it also threatens to become a much bigger scandal.
and sometimes it’s bumpy.” …
WASHINGTON — A group of senators, including presidential hopefuls Sens. Elizabeth Warren (D-Mass.) and Bernie Sanders (I-Vt.), blasted Novartis (NVS) on Friday for failing to promptly disclose that falsified data were used to win approval for the company’s $2.1 million gene therapy, Zolgensma.
Senators blast Novartis over data manipulation before approval of Zolgensma
https://www.statnews.com/2019/08/09/senators-blast-novartis-over-data-manipulation-before-approval-of-zolgensma/?
“Such greed cannot be condoned by the FDA,” the group of senators, led by Sen. Dick Durbin (D-Ill.), wrote in a letter to the agency’s acting commissioner, Ned Sharpless. “We urge you to use your full authorities to hold AveXis accountable for its malfeasance, including through all appropriate criminal, civil, and regulatory actions against the company.”
…is the most expensive drug ever.
Beyond Novartis, the senators said they wanted the FDA provide answers on how it deals with cases of data manipulation. They requested a written explanation on why the agency decided in October 2018 to withdraw a regulation that would have required drug makers to report suspected data falsification to the FDA.
“FDA’s justification for the proposed rule was because ‘it is important for the agency to have confidence in any data from studies,’” the senators wrote. “American patients also want to know whether they can trust the integrity of FDA’s approval process.”
Novartis and the University of Oxford’s Big Data Institute to establish world-leading research alliance using artificial intelligence to understand complex diseases and improve drug development
https://www.novartis.co.uk/news/media-releases/novartis-and-university-oxford%27s-big-data-institute-establish-world-leading
Novartis C.E.O. Defends Company’s Decision to Withhold False Data From the F.D.A.
https://www.nytimes.com/2019/08/07/health/novartis-fda-gene-therapy.html
Scott Gottlieb, MD
@ScottGottliebMD
Based on the tone and substance of the FDA statement today, Peter, I suspect there will be wrongdoers here. And consequences.
First Opinion
Novartis violated FDA’s sacred principle: In God we trust, all others must bring data
By Robert M. Califf
August 14, 2019
https://www.statnews.com/2019/08/14/fda-novartis-zolgensma-data-integrity/?utm_source=STAT+Newsletters&utm_campaign=9c64a9c411-Pharmalot&utm_medium=email&utm_term=0_8cab1d7961-9c64a9c411-149674737
A common saying at the Food and Drug Administration is: “In God we trust, all others must bring data.” The independent evaluation of science is an essential element of the FDA’s dual role of protecting the public health and promoting innovation to bring new therapies into practice. In fact, with certain exceptions, the FDA is the only regulatory agency for drugs and devices that independently evaluates both the science and the source data from relevant studies. In many ways, the FDA serves the world as an arbiter of quality in the global development of medicines.
Novartis ousted top scientists over manipulation of data for gene therapy
By Damian Garde @damiangarde and Matthew Herper @matthewherper
August 14, 2019
https://www.statnews.com/2019/08/14/novartis-ousted-top-scientists-over-manipulation-of-data-for-gene-therapy/?
Top scientist categorically denies any wrongdoing in Novartis data manipulation scandal
By Matthew Herper @matthewherper
August 19, 2019
https://www.statnews.com/2019/08/19/top-scientist-categorically-denies-any-wrongdoing-in-novartis-data-manipulation-scandal/
FDA on Novartis data manipulation controversy: ‘We happened to be lucky’
By Matthew Herper @matthewherper
August 21, 2019
https://www.statnews.com/2019/08/21/fda-on-novartis-data-manipulation-controversy-we-happened-to-be-lucky/?utm_source=STAT+Newsletters&utm_campaign=576dda7b40-Pharmalot&utm_medium=email&utm_term=0_8cab1d7961-576dda7b40-149674737
“Instead, it’s a big story.”
The next pharmaceutical wave: screening for dementia – government gives £250m to develop AI programmes:
https://www.dailymail.co.uk/news/article-7335107/Boris-Johnson-pledges-250million-new-artificial-intelligence-lab.html
John -I’m not sure whether the spokesperson on R4 am news worked at the Royal Free or was bigging it up for the interview as part ofhis new job on AI in the NHS- whatever, another opportunity for treating people with contempt was used to sweep their record of handling data under the carpet by not mentioniong the contract between Royal Free and Google Deep MIND . 1.6million medical records were handed to Google a few years ago without consent and included personal details such as addresses, abortion details HIV status. They still have a contract with google. he stated that information would be ‘shared’ with ‘appropriate permissions’. He much admired the work going on at Chase Farm but didn’t mention they had been taken over by the royal free. So three related hospitals ,including Barnet, in N London are linked in with UCL .They are part of UCL which has already developed AI which ‘flags up people who are LIKELY to miss an appointment ….’ but hard to find any other info which will identify what more they are doing. Oxford NHS has developed AI which is being ,or is already developed, to predict who is LIKELY to develop bipolar disorder (New Scientist). Today an NHS trust in the West country hasbeen outed for releasing the personal details in public, including addresses, of 40 people with HIV
Just skimming through a few sites it names several people who used to work at UCH and have now left to work for private companies. While some of us are out innocently picking bilberries – those who are making careers and vast sums of money are cherry picking intimate private information to an extent few of us understand. The algorithms they are besotted with are seen as a waste of money by many critical medics and AI watchers who comment on the web – when medical robots rule hospitals and surgeries with their mini computers at hand – we will all be paying google via technicians trained not to think but to use de humanising technology
Susanne
What now goes on at Chase Farm? I remember a few years ago it was officially rated as the dirtiest hospital in the U.K., and having had to go there for tests a couple of times in the noughties I can vouch the dirt at that time was not merely relative but everywhere palpable and alarming.
https://www.theguardian.com/politics/2005/feb/07/uk.society
Anyhow, guilt by association I suppose.
Well John – the appalling dump was closed down and then re- opened and ‘aquired’ by the Royal Free in it’s empire grabbing excercise in N London – and is now an ‘Exemplar’ a ‘Digital’ hospital none other, enjoying millions of start up cash and the advantage of UCL’s .patronisation,
see’- Digital Health News -Behind the Scenes at a GDE – Digital Health visits Royal Free NHS-FT. The RF kindly arranged the visit to it’s ‘aquisition’ Chase Farm to show off it’s progress in digitalising individuals data . The clinicians can ‘even choose their own preference for the colour used on their screens’ thank goodness for that…
Here’s an interesting article to show how it’s all come about – New Scientist by Val Hodson – ‘Did Google’s NHS Patient Data Deal Need Ethical Approval?’ 13 May 2016. Talk about eels in a bucket.
I’ve made an FOI request to RF to ask how individuals are asked to give ‘appropriate permissions’ for use of their data by Google as no mention of that little detail in articles.
I shall be fascinated to find out how they reply.
World Report
The Lancet
Published: August 10, 2019
GP at hand: a digital revolution for health care provision?
Talha Burki
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)31802-1/fulltext?dgcid=raven_jbs_etoc_email
Yesterday, AlterNet published this article by Ralph Nader. As an American political activist who has been involved in many consumer protection initiatives, he states “Big Pharma’s trail of greed, power, and cruelty gets worse every year. Its products and practices take hundreds of thousands of lives in the U.S. from over-prescriptions, lethal combinations of prescriptions, ineffective or contaminated drugs, and dangerous side-effects.”
Know your Drugs
Ralph Nader’s message to Congress: Big Pharma’s trail of greed, power and cruelty must be stopped
https://www.alternet.org/2019/08/ralph-naders-message-to-congress-big-pharmas-trail-of-greed-power-and-cruelty-must-be-stopped/?
These are not the times to intervene systemic failure in science.
In a time where we silence critics by using ‘democracy’, ‘democracy’ only applies to those who allready follow the set path, someone else (including scientists, politicians) decides what you should say, think and know.
A Trump quote: “Look at Sweden….”
My beloved country is falling into ruins simply because we aren’t allowed to say what is happening.
‘Fake News’ is an umbrella term, used by both sides.
Scientists and psychiatrists can still claim that “RCT’s have shown….”, everything else is seen as fake news.
I’m leaning towards that we do not want to know, we want things to stay the same.
And we certainly don’t want to be alone when criticising.
Ove2019
Fake News issue from the BMA’s other house journal ‘The Doctor’ complete with attack on “anti-vaxxers” by BMA chair Dr Chaand Nagpaul:
https://issuu.com/thebma/docs/the_doctor_-_issue_12
Meanwhile, back at the Medical Journalist’s Association patronage is merrily being found from:
Bristol Myers-Squibb
Edelman
Lilly
MSD
Roche
Sanofi
Wiley
https://www.mjauk.org/2019/06/14/winning-in-the-rain-the-2019-mja-awards/
Lock up your daughters the vaccinators are needing another cohort of women to inject and there are zillions of young women all over the world vulnerable to being targeted by a vaccine which is being bigged up all over the media with different spins. Imperial college claims it will be ready in 5-7 years even though trials have not being completed – so presumably no such claim could be made. Research identifies 20 women out of the whole population took part in trials with hefty doses of the vaccines. Best of luck, sincerely, to them when they will already be loaded with other vaccines.
https://www.theguardian.com/society/2019/aug/12/chlamydia-vaccine-clinical-trial-cure-sexually-transmitted-infection#img-
first time to try a link so hope it works but loads in Lancet, New Scientist Guardian – possibly written by the medical writers on John’s list above.
Hi Ove – I remember when Sweden used to be talked about as an example of a shining sucessful modern democracy as is/wasUK. But the understanding of democracy is screwd when in both Sweden and UK there is massive inequality and no way of kinowing how things are being run behind the scenes. For example here the idea of democracy was hugely underpinned by having the National Health service free at the point of delivery for everyone. The web of private-public partnerships which have crept all over the NHS now is one way democracy has been eroded, for example by the introduction of health ‘partnerships’ with companies which have tentacles all across Europe. Most of us have very little idea of how they operate but one I notice because of your comment is a private company called LIVY (it’s named SPRY in Sweden or word meaning ‘life’)
)-https://digitalhealth.london/gp-video-consultation-livi-nhs/ They say 5% of people in Sweden use the app needed to access video consultation, 1 in 4 over 50yrs old. Many of us including me, don’t even have devices which can use apps, or GPs who are using the schemes. If we use LIVY our consultation result is still referred back to the NHS but I am not clear who holds all our information . LIVY requires amongs other details, passport details, photos, leaving massive loopholes for errors and fraud. It’s been set up with no consultation as far as I can see via the web – democracy is bust all over the world even if we are not getting physically beaten up in public.
Yea, Sweden has been synonomous with with a very good side of ‘democracy’. And as with many things, it worked until pushed overboard. Sure people have been complaining about taxes and so on, but behind that we built a welfare and a working society. From kindergarten to the elderly, even our justice system was seen as ‘fair’. But slowly, since about the crazy boom in the late 80’s, it has been torn down. Privatization. And yes, it has been seen more and more in healthcare, but they held out much longer than telecommunications, transportation and other vital societal functions.
KRY, is probably the name of the app you fetch for. “Kry” is hard to translate, its sort of a mix of being “spunky and perky” and the more general “healthy”.
We’ve gone through several ‘updates’ to the ways we contact healthcare, each one dumber than the last. The old telephonequeue was replaced by automatic services, then came the press “button 3 for prescription renewal”, and lately you must enter your social security numbers and a health professional will call you. Not all that easy for the elderly and impaired.
I have just helped my dad getting an ‘electronic id’ on his phone, which in turn is written about daily in the media concerning ‘identity theft’.
The similarities between Britain and Sweden goes deep, much deeper than I realized. A root cause for that might be a very early ‘companionship’ between swedish television and the BBC, we have been molded in the same form.
I feel strongly for Sweden, of course, but I feel even worse for my parents generation who paid their taxes for 50 years and built our society after ww2. Only to end up poor as #¤%& for their retirement, while ‘new swedes’ gets homes built for them.
Social democracy falls under the weight of their own good deeds. There should not be anything wrong with tending to your own first.
Ove.