Tell me how you’ll use my medical data. Only then might I sign up | Kenan Malik |

“Would you allow your medical data to be anonymised and used for research into cancer or to aid future pandemic planning? Most people would probably say yes.”

“I certainly would. But what if that data could be accessed by tech giants such as Google, medical corporations such as Babylon Health, security firms such as Palantir, or coercive state institutions like the police or immigration service? That raises a few red flags.

“What if that anonymised data could in fact help pinpoint who you are? Now you’re getting me worried.”

That is the dilemma most of face. We want to do good and also help one another.
But this Gov has repeatedly got into bed with the wrong partners and appointed people we do not trust.

It has squandered public money in Tory cronies rather than deploy it prudently for the common good.

It has repeatedly and high handedly exercised Henry VIII powers.
It has shouldered out Parliamentary scrutiny repeatedly.

It has conducted itself in the most divisive way possible.

And it mostly has poodles for MPs, most who seem to have a poor grasp of maths, public health, trade and statesmanship.

How can I trust them with my health data?
I don’t.

And the extraordinarily confusing information provided, poor signposting about which form does what means few would be making informed choices.

Indeed the presumption is you will be opting in unless you opt out.
There are two kinds of records to consider with different consequences.

One allows clinicians to access records of patients they may be treating. That seems like a good idea..but questions need to be answered about who can access it and controls over privacy.
That one is not likely to be implemented until September and is not the one you need to consider URGENTLY.

Type 1 Opt out of GP records.
The second kind of database aggregates information from millions of people, allowing researchers and planners to see the big picture, from geographic or ethnic variations to hidden links between health issues.

That sounds like a good idea too? Most of us would support it.

“In 2013, NHS England launched its project to create such an information store. The government was forced to close it down, however, after controversies over poor privacy safeguards and the sale of data to private companies.”
“That disaster may have been one reason for the new project being pushed through by stealth. The new database will include even more sensitive data, including on criminal activity, personal relationships and child abuse, as well as medical history.”
“Yet a number of the problems that doomed the earlier scheme remain unresolved.”

You are telling me.
“Many studies, for instance, have shown the possibility of identifying individuals even from anonymised data. The sale of such data to private corporations is still a live issue.”
Rehydrating identity from pseudonymised data is not that difficult for big corporations with access to multiple databases. Like Palantir.

“In Oct 2019, NHS England’s top brass met big tech and pharma executives to discuss how they may be able to exploit the proposed database”
“There is, in principle, nothing wrong with private researchers accessing the data. The problem arises when it can be used potentially to snoop into our lives or to undermine the health service, for instance, by companies that want to take over GP surgeries.”

This is happening
Instead of giving crystal clear information about which type of process would govern which type of data the Gov and NHS have provided remarkably poor and confusing information.
Instead of asking for consent, have set in motion an automatic process whereby your GP data WILL BE transferred to a central repository unless you fill out TYPE 1 Opt out form and either hand it in to your GP surgery OR post it.

Some may accept an email.
This opt out cannot be done online or through the NHS App. So if you have completed an online form AND BEEN ABLE TO LODGE it online you have NOT completed the correct form to prevent this happening.

And once gone it cannot be retrieved.

Use this form…
Remember. The Gov has already used companies like Palantir to “assist” with NHS data (see @openDemocracy reporting on it). For some reason ( ‼️) Palantir were not worried about being paid.

Palantir started off working with US Intelligence and Defence Agencies.
It also worked with SCL/ Cambridge Analytica to show them how to mine and make the most out of Facebook data. Co founder of Palantir is or has been a board member of Facebook

And now Babylon Health…
Cummings has worked with Babylon Health and Hancock endorsed Babylon Health’s App leading to another accusing of a breach in the Ministerial Code.

It’s CEO, Parsa, is said to be friends with Hancock. We know how that works from PPE contracts.…
As for this large Palantir investment in Babylon Health. It seems from the article that they have been working together for a while.

Parsa, Babylon Health’s CEO says:
“Where Palantir’s technology can help is in providing more advanced ways for his company and its customers to analyze individual patients to know when they may need to take action or seek specific help…”

Sounds lovely, doesn’t it?
“It’s similar to how companies use Palantir to know precisely when their products need an upgrade or refresh”. Is that all

Not quite.

“With health care, one of the biggest challenges is the massive amount of data generated by the human body is really not used well at all”
Babylon Health is the company whose app Matt Hancock praised that also resulted in a data breach that allowed one patient’s “private” video consultation to be viewed by another patient.…
In fact Dr Murphy has been trying the app out.


So do you want a Gov body or NHS Digital to be able to decide which private company (mates) will get access to your pseudonymised but rehydratable data ?
How odd that I should mention Palantir and Cambridge Analytica.

Just to complete the circle a bit further @carolecadwalla has just provided this link of a discussion between none other than Alexander Nix (SCL/ Cambridge Analytica ) and Dido Harding
I’m not clear about the date of this discussion between the two but the link to the full interview, nor Harding’s rôle at the time of it
Clearly before CA’s demise
@carolecadwalla might know

Part 1 “Future Proofing Britain”

(me: Rolling around the aisles laughing hysterically)
Even funnier here she is asking Nix about regulating the Technology Industry. Listen to him!


She seems quite charmed by him.…
He seems positively regretful at the time of this interview that in the UK you have to opt in (consent to the analytics & uses) whereas 🇺🇸 is OPT OUT.

Here we are a few years later being faced with 🇺🇸 style OPT OUT for our most sensitive data, without which it will be used.
Who Dido Harding chooses to have conversations with and about what is quite something‼️

Global Deputy Chief Privacy Officer at FACEBOOK Stephen Deadman tells Dido Harding that changing the age of consent for data use could improve child safety⁉️
Here’s another. Who does she turn to for help with FAKE NEWS?

The CEO of the Telegraph Group, Nick Hugh…
For those who want a little bit more about the Palantir / Babylon partnership.

Excerpts from the FT. H/t @Alheri
According to @VesperUK the interview was in 2018 do before Harding became a Director of Genomics England Ltd (Nov 2019 - resigned Sept 2020)

And after she resigned from her various 18 other directorships.

But if it WAS 2018 then she WAS appointed Chair of NHS Improvement from Oct 2017 for 4 years.

I’m even more curious about the dates of those various interviews now. When did Cambridge Analytica start being talked about by @carolecadwalla and in DCMS?

See date from YouTube link
She MUST HAVE KNOWN that Nix and Cambridge Analytica were in the eye of a storm about data mining and misuse of personal data on 21st Feb 2018

Look. Just a month later reports all over the press about the ICO seeking a warrant to access CAs servers.
This thread of mine was on 29/3/2018 on the documents @chrisinsilico submitted to the DCMS committee about SCL/ CA

How could Harding be blind to the back story which had been going on publicly for some time before that?
The Dido Harding - Facebook interview on CONSENT : 15 Feb 2018

The Telegraph interview on Fake News : 1st March 2018
Sorry. This thread is getting very long.

Shall we see how well it is working BEFORE your date whooshes off into a central depositary?

It goes on for pages. Be warned.
If YOU are concerned (& I think you should be) PLEASE please contribute to this Crowdjustice fundraiser to support an early case for injunctive relief.

The excellent @Foxglovelegal is taking it forward. I am worried as it is not even half way to its first target
Every fiver helps. £10 or more even better!

Help get this data sharing into a safe space and process that we can all support.…
Today a superb summary of the serious issues with the proposed data grab in a letter to the Guardian, from Alan Rector, Emiritus Professor of Medical Infomatics, Manchester Uni.

5 key points.:-
I want to raise the issue of policing what happens re third party access, where patient data has been lawfully or unlawfully obtained -
How is the NHS or Gov going to police it?

Let’s imagine that Techy Supremos from highly sophisticated Tech or Digital companies gained lawful access to data you had given permission to be held in the central repository.
They have the additional databases, know how and technology to rehydrate it and identify you.

How is anyone going to know? Or find out who else/ other organisations they have allowed to see or use it?
I can’t see the NHS or Gov being able to turn around to them saying “we must seize and inspect your servers (holding terabytes of sensitive data from other organisations) “
If things had gone so far they had the material for a warrant or order then it would already be too far gone.
Let’s not forget the weeks the ICO had to wait post application, having had to notify CA first, for a warrant for Cambridge Analytica and by the time they had arrived cartons of evidence had been removed and efforts made to destroy it.

Try that with multi billion $ companies
As Alan Rector said, there are safer ways of dealing with this.

And as @I_M_Stratton pointed out in this letter, as they try and guilt you into not opting out using the Recovery Trials as an example of what was achievable.

They achieved it just fine by seeking consent.
And, just to make you laugh …two minutes of @mattgreencomedy on the subject of doing nothing until 23rd June….

Or complete the form in his tweet.

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More from @fascinatorfun

7 Jun
The Government Wants to Sell Your GP Medical Records – Here’s How to Opt-Out – Byline Times

1st July. Whoosh! “Data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments..…
“ including information about physical, mental and sexual health.” This will also include data about “staff who have treated patients”, and data “on sex, ethnicity and sexual orientation”, as well as other sensitive data.”

And they won’t “sell” it. They will “charge for access”
“Having collected millions of patients’ GP histories, their data will be “disseminated” – including into the secret ‘VIP lanes’ for GP data.
It is likely that the majority of the population will not be aware of any of this.”
Read 10 tweets
6 Jun
She has such good judgement.

She chose to interview Alexander Nix, Facebook & Telegraph to talk about data analytics and ethics, consent and Fake News all in Feb/ March 2018 when she was (& is) Head of NHS Improvement & when the Cambridge Analytica/ Facebook débacle headlined
Read 4 tweets
6 Jun
515 HCW median age 45 in AZ arm, 43 yo in COVAXIN arm
Few over 60 yo.

Both vaccines elicited good immune response after 2 doses. Seropositivity rates & median anti-spike antibody titre was significantly higher in Covishield compared to Covaxin arm.
📌 Among the 515 HCW (305 Male, 210 Female), 95.0% showed seropositivity after two doses of both vaccines.

📌Of the 425 Covishield and 90 Covaxin recipients, 98.1% and 80.0% respectively, showed seropositivity.…
📌However, both seropositivity rate and median (IQR) rise in anti-spike antibody was significantly higher in Covishield (AZ) vs. Covaxin recipient (98.1 vs. 80.0%; 127.0 vs. 53 AU/mL; both p<0.001).
Read 5 tweets
6 Jun
🦠 5341 new cases. Up 64% on the same day last week but that was both a bank holiday weekend and half term.

However cases by swab date also show a very marked increase since loosening of restrictions.
They are a bit laggy due to processing lag, but we can see they were nearly at 6k on Tuesday 2nd June despite it being half term.

2711 on 19th May.

I am frankly worried.

Especially if DELTA IS 50% more transmissible..and some experts suggests likely more.

I tend not to pay much attention to deaths and hospitalisations over the weekend and updating is quite laggy.

But hospitalisations have turned upwards a little, something I hoped but did not expect to avoid.

Every Covid bed is a bed not available to non Covid patients.
Read 5 tweets
5 Jun
Inside India’s ‘black fungus’ wards: Delta variant linked to hundreds of deaths from mucormycosis

Over use of steroids is a contributory factor, but that happened in wave 1 without this outcome.

Doctors say the DELTA variant increases risks of diabetes…
Previously young, fit people brought down by it.

Mr Travedi, 38 years old, has had his left eyeball, the maxillary sinus and the roof of his mouth removed.

27 year old Trembale Aamabare has also had part of his sinus removed.

They both have blood glucose levels of a diabetic.
11,000 Indians have been diagnosed with this condition through the Covid crisis.

This is just one murcormycosis ward in one hospital.
Read 8 tweets
5 Jun
NHS hit by legal threat over GP data ‘grab’

Patients have until June 23 to opt out by filling in a form & TAKING IT TO THEIR GP for themselves, & their children, before their historical records become a permanent and irreversible part of the new data set.…
It looks to me, from the form itself, that this CANNOT BE FILED ON LINE OR THROUGH THE NHS app. @EinsteinsAttic or @PrivacyMatters can correct me if I am wrong

It has to be completed & handed in to your GP

What about email?
I don’t know how they can verify signatures re email.
If you’ve done it online or through the NHS App I think you’ve gone for the wrong opt out.

A great example of how appallingly badly this is being handled
Too many do not even know the right form to use

GP surgeries are sending out the wrong form when someone sends the right one
Read 7 tweets

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