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Phil Booth Profile picture
@EinsteinsAttic
Oct 25, 2022 • 10 tweets • 15 min read • Read on X
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@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...)

__
*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
Dec 29, 2022
Nah. This is another puff piece on the #WaitingList pilot, details of which @NHSEngland published - without daring to mention @PalantirTech - over ten months ago...

england.nhs.uk/coronavirus/wp…
To be clear, 30 individual NHS Trusts* are using #Palantir #Foundry to manage elective care waiting lists, not patients' entire medical histories - largely by what Ministers have called "cleansing" the data:

palantir.com/uk/healthcare/

*Though @NHSEngland won't say which ones...
The timing (and placement) of the piece is, however, quite obvious - with the tender for @NHEngland's "#FederatedDataPlatform" imminent.

And the #FDP - whether awarded to #Palantir or otherwise - is most definitely something people will have concerns about, especially given...
Read 5 tweets
Phil Booth Profile picture
Nov 13, 2022
This headline 👇 will be no surprise to anyone who's been following @NHSEngland's plans (and actions) for a while.

But @JonUngoedThomas's article reveals some crucial details about what's intended for your #NHS #HealthRecords that are worth unpacking...

theguardian.com/society/2022/n… Controversial £360m NHS Eng...
First, and possibly most significantly, is @NHSEngland officials' confirmation that its '#FederatedDataPlatform' will incorporate patients across England's #SharedCareRecords: Health officials confirmed ...
Why is this so important? Because #SharedCareRecords - which every new #ICS* is supposed to have - include your #GPdata, which @NHSEngland has been trying to get hold of for years (most recently last summer)...

__
*#IntegratedCareSystem explainer here:

kingsfund.org.uk/publications/i… Map 1: The 42 integrated ca...
Read 21 tweets
Phil Booth Profile picture
Nov 1, 2022
So let’s talk about where things got up to with your #HealthData, before Rishi Sunak started talking about the need to generate trust in Government with “#integrity” and “#accountability”…

gov.uk/government/spe… I will unite our country, not with words, but with action.
Earlier today we got a bunch of detail out of @NHSDigital’s Board papers and services performance pack - what of that will continue post-#merger?



N.B. The chair of NHS Digital announced today’s meeting would be the last public meeting of the Board...
With the news that the Government is rushing through @NHSEngland’s takeover of the statutory safe haven (@NHSDigital) with about the level of planning that went into the 'fiscal event', where exactly *are* things as the former/new Sec State starts work?

Read 31 tweets
Phil Booth Profile picture
Nov 1, 2022
While the chaos of '#AcceleratedCitizensAccess' to #GPrecords continues to unfold:



...we've come across some perturbing items on the agenda for @NHSDigital's Board meeting this afternoon 👇 which I'll pick up on in this [Thread].

nhs-prod.global.ssl.fastly.net/binaries/conte…
First, beginning on page 158, are some Directions that @NHSEngland must know will be HIGHLY controversial - given they are telling @NHSDigital to use @PalantirTech's #Foundry to collect *patient level identifiable data* from hospitals... 1 Executive Summary NHS England are directing NHS Digital t
I'll tweet as I do a read-through, but even these first two paragraphs are incoherent, e.g. "...in a way that will enable." Enable what?

And if @NHSEngland Directs NHSD to use #Palantir, NHSE is *determining the purposes and means of processing* - i.e. it is a #DataController... Whether you are a controller or processor depends on a numbe
Read 25 tweets
Phil Booth Profile picture
Oct 30, 2022
Hmm. Why would @ukhomeoffice choose to announce this today:

gov.uk/government/new…

...making explicit reference to "the findings from the Independent Review of #Prevent, led by William Shawcross", WITHOUT PUBLISHING THE REVIEW?
It's not like publication of the #PreventReview wasn't long overdue *nearly a year ago*...

independent.co.uk/news/uk/home-n…

From December 2021: Review of Prevent counter-e...
...and yet, despite having been submitted to @pritipatel in April 👇, and #leaked in May 2022:

theguardian.com/uk-news/2022/m…

...and then #teased in September:

telegraph.co.uk/politics/2022/… The findings of the report,...
Read 5 tweets
Phil Booth Profile picture
Oct 30, 2022
Yes.
And it's far worse than some 'technical breach':

#Inhuman mistreatment *knowingly* in breach of the law:

Read 4 tweets

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