Discover and read the best of Twitter Threads about #trustworthy

Most recents (9)

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:



__
*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...
Call yours what you like (e.g. for @ONS it's their Secure Research Service) but if it only does four #Safes, or three Safes - and if it isn’t also #consensual and fully #transparent - then it's not a #trustworthy TRE...
Read 24 tweets
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
"185 wide-ranging recommendations for us to explore", says @sajidjavid (p6). Gulp! Time for some coffee...

"systems that ensure #underrepresented groups are well represented" may (partly) refer to this "landmark review", which got off to a slow start:

gov.uk/government/new… The far-reaching independent review into potential ethnic bi
Read 159 tweets
"#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?

140+ pages on a Friday is a lot to digest, but @lilianedwards' "penumbra of often futile determinedly populist ideas largely not evidence-based" seems entirely consistent with @DCMS's Drunkard's Walk through #data and #ID this past year...

Read 28 tweets
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 👇
Of those 18 data flows, nine of them are to do with the #vaccination programme - and only started from February of this year. A tenth seems to be mis-dated, unless we had a vaccine no-one ever heard of in April 2020? 🤔

Several of the other named purposes we already knew...
Read 14 tweets
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...
...always be 100% #trustworthy, and certainly not 100% #trusted - given #trust is ALWAYS 'in the eye of the beholder', and NEVER a property of a system.

#Governance and #accountability are key, of course. And maybe this time, we'll actually get what is #needed - rather than...
Read 6 tweets
Hi, @BHFDataScience! Please could you point me to a copy of your letter that is reported here:

theguardian.com/science/2021/j…

I've checked your website, but I can't seem to find a copy:

hdruk.ac.uk/helping-with-h…
Ah, no worries - I see it now. You tweeted a link to it, and I see it is on @HDR_UK's website:

hdruk.ac.uk/news/nhs-digit…

On reading your letter, @medConfidential would heartily agree with paragraphs 1, 3 and 5...
On paragraph 3, we very much agree that #trustworthy use of patient data for #ethically-approved #research is good.

But not ALL intended uses of #GPDPR *are* trustworthy, as @NHSDigital's own data release registers confirm:

theysolditanyway.com
Read 11 tweets
A [Thread] on @CDEIUK's "Addressing trust in public sector data use" report:

gov.uk/government/pub…

(Likely in bursts)

1/x
Good point on #evaluation. So why aren't ALL public sector & Government contractors under #FOI, and #required to provide such data? Hiding behind 'commercial confidentiality' shouldn't be allowed.

"Sharing" is a two-way activity!

/2 Image
While it may be implicit, any 'sharing' of #PersonalData must above all be #lawful - which means #necessary (for a particular, specified #purpose) and #proportionate. Individual #consent may provide one lawful basis; the notion of "public consent" is rather more hazy!

/3 Image
Read 12 tweets
Simon touches on a key point in his first item.

As with #falsifiability in #science, in #practice '#ethics' only work in the context of a #profession or #community *from which one can be #excluded*.

Those wishing to be #trusted as #ethical must stop issuing '#principles' and...
..setting up #EthicsBoards like @Google's or private courts like @Facebook's @OversightBoard (both demonstrating how poorly #BigTech grasps basic concepts like #justice, let alone #ethics, and how both - as #sovereign powers - have utterly misconceived #community) and start to...
...genuinely #professionalise.

Not in the shitty, self-serving, #cartel-like fashion of many companies & industry bodies in tech, advertising - and yes, DP & privacy - but in broader, deeper, more #connected ways that *could* deliver the #trustworthy #institutions of the future.
Read 5 tweets
@FBI @FBIRichmond @NewYorkFBI @POTUS @VP @seanhannity
1/UTMOST #CRUELTY! NO Conscience!.. Apartheid? Islamists? NO, worse than them, Pro-democracy #CORRUPT-agents/#fbi #cia who fully destroyed my life& recently damaged my car’s ِِِِ#ِEngine, #Exhaust، in addition to lots of
2/previous damages to my car+stuff, destroying my 5MacBook, luggage+briefcases+ robbing my 2international cellphones+other valuables…&destroying my job opportunities+applications& hacking my accounts/yahoo, twitter…& since few months ago, hacking my indeed account to prevent me
3/ from applying new jobs!…
For few years, I have been suffering from UTMOST HARDSHIP& ATROCITY made by ur special #MOBS due to my belief& political views! ur DIRTY cops are master of non-stop conspiracies& violation of my #Constitution Rights& #CivilRights.
MY GREAT #PATIENCE
Read 8 tweets

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