Phil Booth Profile picture
Mind 'for hire'; critical friend to just causes. Currently also @medConfidential; formerly @NO2ID
LittleGravitas 🇺🇦 🌻 🇪🇺 💙 #FBPE Profile picture 1 added to My Authors
May 6 24 tweets 25 min read
I see #NHSEx has published the slides from its @HDR_UK “Data Access & Discovery” event, charmingly subtitled “A Forest Through the TREs” - on YouTube, if you want to listen:



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*I thought the phrase was “cannot see the forest for the TREs”, but hey... Let’s take a look:

hdruk.ac.uk/wp-content/upl…

One reason we use the category term #TRE to refer to Trusted Research (or any other use) Environments that meet the #FiveSafes is that everyone wants to call their own TRE something different, so no-one really knows what they mean...
May 4 8 tweets 9 min read
Appalling bit of subediting(?) but the article itself lays out both the history and US context of #RoeVsWade and the consequences of overturning it with rather more nuance:

thetimes.co.uk/article/the-ti… The Times view on US abortion law and overturning Roe v Wade The "right approach" the writer appears to support 👇 is the codification of the #RightToChoose into federal #law - which should have happened decades ago. The major issue being the parlous state of US politics... What it should also do is push the issue to the top of the p
Apr 7 159 tweets 134 min read
Finally, the #GoldacreReview is published! (During Parliamentary Easter holidays, mid-ping-pong on the #HealthAndCareBill...)

It's 221 pages - each PDF page is a double page spread - so this could be a lo-o-o-ong [Thread].

Here goes... First point to note, in the Terms of Reference (p5), is that this is about "access to #NHSdata by #researchers, #commissioners, and #innovators" - i.e. #Planning and #CommercialReUse - so it is directly relevant to the operation of millions of people's #NationalDataOptOuts... Terms of reference for the review  1. How do we facilitate a
Sep 17, 2021 6 tweets 9 min read
Welcome back, George.

Now, about that "race-to-the-bottom" slashing of #data #protections... ...which, despite fine words about "maintaining high standards", is plainly the intent of @DCMS's proposed #DataProtection 'reforms':

assets.publishing.service.gov.uk/government/upl…

...which include the intent to (re)define "#ScientificResearch" 🤔🤔🤔
Sep 17, 2021 4 tweets 3 min read
It's quite something to watch a nation that didn't emerge until a century after it ended reinvent #feudalism...

bloomberg.com/opinion/articl…

...presented as a great leap forward by a former #HedgeFund manager, no less! Herded towards the cliff by the #BigFour (dodgy) Accountants of the #Apocalypse...
eand.co/our-civilizati…

(Who'da thunk that #externalities aren't so 'external' in a finite #ecosystem?)
Sep 16, 2021 4 tweets 7 min read
On 8 September - during a consultation on the same, co-sponsored by @JuliaLopezMP - @mattwarman updated the 'UK digital #identity & attributes trust framework':
gov.uk/government/pub…

On 10 September, @OliverDowden
published '#Data: a new direction'...

gov.uk/government/con… ...a week later, they were both gone.

Also @cj_dinenage, who never quite managed to get out @DCMS's "upcoming" #DigitalStrategy, as teased in the #NationalDataStrategy (NDS).

And co-chair of the #NDS Forum, @JWhittingdale, who was "sad to give up":

bbc.co.uk/news/uk-politi…
Sep 15, 2021 4 tweets 2 min read
Sep 15, 2021 6 tweets 5 min read
Sep 15, 2021 5 tweets 7 min read
More info on the @CancerPrev_KCL & @CR_UK-run NHS-Galleri™ #screening trial:

kcl.ac.uk/news/kings-lea…

cancerresearchuk.org/about-cancer/c…

Worth noting you can't #volunteer for this trial, but if you are 50-77 & haven't been diagnosed with cancer in the past 3 years, you may be #invited... Image The NHS-Galleri™ #screening trial is a proper #RCT, which means half of the 140,000 participants WON'T be tested (certainly not in the initial phase) and NONE will be told whether they have been #tested or not.

Of course if the test indicates *possible* markers for #cancer... Image
Sep 10, 2021 28 tweets 35 min read
"#Data: a new direction" - a public consultation by @DCMS on "reforms to the UK’s #DataProtection regime":

gov.uk/government/con…

The consultation ends on 19 Nov 2021, and you can respond by e-mail to DataReformConsultation@dcms.gov.uk or online here:

dcms.eu.qualtrics.com/jfe/form/SV_4P… Image A quick sample of initial reactions...

We're clearly going to be hearing a lot about #LegitimateInterests, as well as #commercial and #public ones. The real question being, how do this Government's interests actually align with YOURS?

Aug 18, 2021 14 tweets 15 min read
Without fanfare, the reasons for which will soon become obvious, @NHSEngland finally published its #DataStore "#DisseminationRegister":

england.nhs.uk/publication/da…

18 months after we first pointed out it had to, and over a year since we began requesting it!

Let's take a look... For starters, it's staggering how little information the register actually contains. Just 18 lines, on 18 data flows or extracts over the past 18 months!

This for what has repeatedly been claimed as a "vital #COVID19 resource"?!

Here's a snapshot of ALL of them 👇
Aug 1, 2021 13 tweets 17 min read
On this I can agree with @Dominic2306, and go further.

#SW1 #IT and #IG has been in a parlous state for well over a DECADE, and more.

A year and a slew of inquiries after the @HMRC #ChildBenefit #DataBreach in 2007, we #FOIed every Government Department about the #databases... ..of #PersonalData they held. (Initially just the ones containing over 1 million records.)

I'll have to dig up the responses, but I clearly remember only 4 or 5 (out of 24) even had an #InformationAssetRegister, i.e. just a basic list of all the #databases for which they were...
Jul 31, 2021 5 tweets 7 min read
Hmm. So the shadowy #JBC, a part of @UKHSAgovuk (which is, I note, still answering #FOI requests as @PHE_uk 🤔) is now hiring *permanent* staff:

jobs.ac.uk/job/CHZ649/nhs…

HT @samdownie Noting that neither @UKHSAgovuk OR the #JointBiosecurityCentre were listed as official @DHSCgovuk agencies in its latest update...

gov.uk/government/pub…
Jul 31, 2021 13 tweets 21 min read
So the Gov't has gone from promising a review of #VaccinePassports in February...

bbc.co.uk/news/uk-561696…

to officials saying #domestic uses are "dead" and "not going to happen" in May...

independent.co.uk/news/uk/politi…

to the review stating they won't be #mandated in early July... ...to @BorisJohnson announcing they WILL be #mandatory for (mostly) young people from the end of September:

thetimes.co.uk/article/labour…
Jul 30, 2021 4 tweets 3 min read
If millions fewer young people are doing twice-weekly #tests then obviously those numbers will go down.

And that children are no longer #mixing regularly will have significantly reduced #transmission amongst their own and other age groups, i.e. family members.

I'm not sure... ...this is 'news', though it's another failure of (public health) comms if folks are being left confused.

More concerning, however, is the implication the #models - which one assumes were those used to predict the effects of re-opening schools - either didn't or couldn't cope...
Jul 30, 2021 6 tweets 9 min read
Good to see #motivation in addition to #competence, #honesty & #reliability.

It always bothered me that #sociopaths could pass Onora's three tests of #trustworthiness*; they can be entirely #competent, brutally #honest & (predictably) #reliable but...

_
*ted.com/talks/onora_o_… ...I still wouldn't necessarily feel comfortable #trusting them. (The same applies to corporate entities - some possibly even more so.)

@medConfidential's formulation - #consensual, #safe and #transparent - addresses a subtly different problem, which is that NO system will...
Jul 29, 2021 9 tweets 4 min read
Let me tell you a tale about #BTECs, which I taught in the early 90s. (Names changed.)

Some of the students I taught General Art & Design (GAD) BTEC also did an A-level or two, but many of them didn't. And far too many of them had already been failed by schools that treated... ...'non-academic' kids as inferior, slow or disruptive. Some of my students did have problems; most often no fault of their own. But they showed up. And together, we learned.

I still remember the 'lightbulb moments' - the pieces & projects when young people found their stride...
Jul 21, 2021 13 tweets 17 min read
There seemed to be some confusion about (the use of) words in @CommonsHealth Committee yesterday morning, so here's a [Thread] to try to clarify.

First "#commercial". It is of course the case that many parts of the #NHS use commercial providers, e.g. of software, whether that... ...is @Microsoft365 for word processing, spreadsheets & e-mail; or IT systems to handle patients' records in hospitals (e.g. @CernerUK) & General Practice (e.g. @TPP_SystmOne, @EMISHealth, @CegedimHS); or software to drive complicated equipment like #MRIscanners, etc.

This is...
Jul 19, 2021 6 tweets 5 min read
The #GPDPR #GPdata upload will still be going ahead, but it will no longer be starting on 1 September 2021 - the programme will have to meet 3 (or 4) #tests first instead:

digital.nhs.uk/news-and-event… We'll let you do the diff between the "criteria" laid out in the announcement on @NHSDigital website and the "key areas of work" listed in the letter to GPs from @Jochurchill4 this afternoon:

file-eu.clickdimensions.com/hscicgovuk-amn…
Jul 18, 2021 5 tweets 5 min read
The terms of the 'Daily Contact Testing Study' (#DCTS) are here:

snapsurvey.phe.org.uk/dcts/

If 50% of volunteers have to do daily #LFTs instead of self-isolating, the odds of both the PM & Chancellor falling into that group aren't that high.

But the optics sure aren't great... Image More info on the "40,000 person #DailyContactTestingStudy", which launched on 9 May, here:

gov.uk/government/new…

Given more than 500k people were pinged by the app *in the first week of July alone*, it seems a bit odd the study isn't already full:

bbc.co.uk/news/uk-578549…