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Oct 25 • 10 tweets • 15 min read
@LisaMWatki That @ukfuturehealth somewhat 'buries the lede' on its intention to construct a giant £212 million 👇 #DNA / #genomic database in its patient literature is somewhat concerning...

find-tender.service.gov.uk/Notice/019818-… II.1.4) Short description The scope of the procurement is r
@LisaMWatki @ukfuturehealth ...not to mention the £62.5 million+ they'll be spending taking people's #bloods, etc.:

find-tender.service.gov.uk/Notice/005068-… A service provider(s) will be responsible for elements of iniv. Responsible for legal and compliance issues related to p
@LisaMWatki @ukfuturehealth Of course, #OurFutureHealth had to get its money from somewhere.

I'll give you one guess as to where...

ourfuturehealth.org.uk/partners/#htoc… Our Future Health has announced £150 million funding from l
@LisaMWatki @ukfuturehealth ...and that sort of cash comes with a few #QuidProQuos - like early #commercial access 👇 to NHS #patients' data...

ourfuturehealth.org.uk/partners/#htoc… We have agreed some specific terms with industry partners th
@LisaMWatki @ukfuturehealth ...the possibility of '#secret R&D' 🤔

That only a "majority of researchers will [have to] return a copy of their results" doesn't sound #transparent at all - and it certainly isn't #OpenScience...

ourfuturehealth.org.uk/partners/#htoc… Industry partners, as well as other researchers that use Our
@LisaMWatki @ukfuturehealth ...then there's #CarteBlanche for full-on #CommercialExploitation, with no ironclad guarantee that #NHS patients will even benefit!

Exactly what sort of '#charity' is this?

Are these terms being made clear to every '#volunteer'?

ourfuturehealth.org.uk/partners/#htoc… Researchers may profit from discoveries they make using Our
@LisaMWatki @ukfuturehealth ...and, as if all that weren't enough to 'sweeten the deal', #industry also gets a bunch of seats on @ukfuturehealth's Board(s).

No #ConflictOfInterest there at all, of course!

ourfuturehealth.org.uk/partners/#htoc… Industry partners will be represented on our Founders Board
@LisaMWatki @ukfuturehealth There *is* an opt-out 👇 - from being sent a letter, that is.

This seems a little bizarre; how would people even *know* to opt out of being "invited" to volunteer for a scheme they'd likely never heard of until they receive the letter?

"#Marketing" 🤦‍♂️

digital.nhs.uk/services/nhs-d… Opt out of invites for the Our Future Health research progr
@LisaMWatki @ukfuturehealth For reassurance, those who have already done a #NationalDataOptOut* for Planning & Research to @NHSDigital should NOT be sent a letter from @ukfuturehealth.

(It'd be interesting to hear if anyone who's done an #NDOO *has* been sent an #OFH letter...)

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*nhs.uk/your-nhs-data-… If you've previously opted out of sharing your health data f
@LisaMWatki @ukfuturehealth @NHSDigital As with every scheme using #consent as its basis, the question is how well #informed your decision is. It's not really a free #choice if you don't know what you're choosing!

I wonder how much of this [Thread] would be news to people who will or who have already #volunteered?

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More from @EinsteinsAttic

Phil Booth Profile picture
Oct 25
HT @LisaMWatki for prompting this [Thread] 👇 on the #OurFutureHealth letter/leaflet some of you may be receiving, which appears to omit a few important details... Image
Those of you with long memories may remember @MattHancock's "5 Million Genomes" announcement back in 2018:

gov.uk/government/new…

So now you know who (one of) the "other partners" is... This will help support Matt...
...and of course it will come as no surprise that the prime mover of @ukfuturehealth (on the radio just last week) is none other than the author of the Government's #LifeSciences #IndustrialStrategy*:

…te.company-information.service.gov.uk/company/122124… [left pic]

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*gov.uk/government/pub… [right pic] ImageImage
Read 4 tweets
Phil Booth Profile picture
Oct 24
Those of you who know my work on #privacy, #identity, and #HumanRights in #data these past 18 years - mostly through @NO2ID & @medConfidential, and in other areas besides - won't be surprised at my involvement in @WEDF_foundation.

This [Thread] is an invitation to join us...
...and help define what I believe is one of the most crucial discussions of our time; on the #personal, #civil, #political and #planetary consequences of the #world(s) we are building - and the #values we want to underpin them. Image
I spoke at last year's @WEDF_forum about '#Engineering for #Ethics', just a couple of months before the #GPDPR #GPdataGrab was announced in May.

My talk was an attempt to reflect on and draw lessons from my years of campaigning and work around #data...

Engineering for Ethics Big...
Read 10 tweets
Phil Booth Profile picture
Oct 23
"Johnson says he will not run in Tory leadership race"

bbc.co.uk/news/live/uk-p… Johnson says he will not ru...
#Timing

web.archive.org/web/2022102320… Get ready for Boris 2.0, th...
#Statement (part 1)

"You can’t govern effectively unless you have a united party in Parliament" 🤔 Here is the text of Boris J...
Read 7 tweets
Phil Booth Profile picture
Aug 18
Prompted by @LynnFOI, a [Thread] on the #NHSTrusts that cut #commercial deals to #copy their patients' data* to (formerly) Lord Drayson's now-delisted "AI" company, @SensyneHealth

First up, it's...

__
*More info on the nature of the data they sold here:

Lord Drayson and his wife have a 22.8 per cent stake in the
1) @OUHospitals (Oxford University Hospitals) took £5 million in @SensyneHealth shares for its patients' data in July 2017:

sensynehealth.com/newsroom/drays…

It LOST £9.2 million on the value of those shares, HAS copied patients' data, and HAS NOT terminated its contract with #Sensyne...
2) @nhsswft (South Warwickshire Foundation Trust) received £5 million in @SensyneHealth shares, in a deal cut in 2018:

sensynehealth.com/newsroom/sensy…

The Trust HAS NOT said how much value it lost; it HAS copied #identifiable* patient data; and it HAS NOT terminated its contract...

__
Read 18 tweets
Phil Booth Profile picture
Aug 17
Bad enough that @SensyneHealth has cost NHS Trusts nearly £15 million - Lord Drayson's claim to be 'giving something back to the NHS' lies in tatters - but what people should *really* be asking about is the MILLIONS of #patients' data the company claims to be processing...
...because, as our letter to the Trusts in April pointed out, at least some of their patients' data that they handed over is #linkable #pseudonymised data - i.e. it is #identifiable, thus #PersonalData in UK law:

medconfidential.org/wp-content/upl… Pseudonymised Data On the matter of the data itself, whethe
So while @SensyneHealth's #shareholders might want to check the company's claims about the #amount of NHS patients' data it actually has, those Trusts that HAVE passed #identifiable data to #Sensyne should terminate their agreements asap - and demand certified #deletion, too...
Read 7 tweets
Phil Booth Profile picture
Aug 17
Hmm. #DisasterSpam or essential #PublicService? Time will tell.

Can't help but wonder, though, if this announcement hasn't buried the lede... Changes to the Civil Contingencies Secretariat - the Cabinet
..."collecting and analysing live data" on a #permanent basis, in a '#CivilContingencies' context, sounds like something the public should be told more about!

Not unrelatedly, and while there's been a lot of focus on @PalantirTech's #NHS contracts, have you tried searching...
...#ContractsFinder for the work Government has awarded to #Palantir recently?

@CabinetOffice (GDS) published one measly £750k contract 👇 from 2015...

contractsfinder.service.gov.uk/Search/Results
Read 7 tweets

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