Discover and read the best of Twitter Threads about #PersonalData

Most recents (24)

1/6 🔥Prepare to be amazed by Ovidiu Damian - @Ovcd27, Tech Lead at @itheum when it comes to everything #MultiversX related.

He will take the stage as a speaker at the upcoming #SeedCaptain conference.

Learn more about his background and presentation 🧵👇

#MultiversXNFTs
2/6 🏗He's got it all - from Smart Contracts and User Interfaces to Architecture design.

With a portfolio of tens of applications on #MultiversX already released, he brings a diverse range of skills to the table.

#TechLead #Web3 #Web3Development #UIUXDesigner #MultiversXtech
3/6 📚Bachelor's degree in Computer Engineering and a Master's degree in International Business Management.

✅Google & Coursera certifications, Digital Marketing Fundamentals, Cloud Computing Basics, Structuring Machine Learning Projects, Improving Deep Neural Networks.
Read 6 tweets
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)...

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*#IntegratedCareSystem explainer here:

kingsfund.org.uk/publications/i… Map 1: The 42 integrated ca...
Read 21 tweets
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
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...

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*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...

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Read 18 tweets
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
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
"You don't give us any data. We don't give anyone your data. We connect data without sharing it" ...magic!
hello.infosum.com/hubfs/Webinar/…
Personal data laundering via 'clean rooms'
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This #WomensDay, we take a look at some stories that show how social systems often exist with glaring inequalities for women, and some cases that show how these systems can be changed Check out this thread to read about women in IITs, femtech, female athletes, and more!🧵
We published a three part series about #WomenInSTEM, that looked at their journey of making it to prestigious universities, both public and private, and the challenges they face in these institutes. Here is part 1:
thebastion.co.in/politics-and/e…
Communities & individuals most affected by #climatechange are often left out the larger conversation of participation and solutions. @_Vaishnavi_R spoke to climate activist @SorengArchana about the role that women & Dalit youth play in conservation
thebastion.co.in/politics-and/e…
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The #PersonalDataProtection Bill (2019) was re-inspected by a Joint Parliamentary Committee, which tabled its report in Dec '21. Though the JPC recommended changes in their draft Data Protection Bill, those regarding non-consensual data processing are the most concerning🧵
Within the provisions of the draft #DataProtectionBill, your data could be used, without your consent. In fact, the government could continue using personal and non-personal data that they know to be incorrect. How did we get here?
thebastion.co.in/politics-and/t…
Chapter 3 of the Data Protection Bill lays out the three categories under which an individual’s data can be processed without their consent👇
thebastion.co.in/politics-and/t… Image
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This is EVP Margrethe @Vestager speech "Democratic values in a digitalised world" @HumboldtUni 25.10.21. It explains rationales, set up basis for what I think will be a successful #EuropeanDigitalLaw! A speech that will continue to resonate for us #Thread ec.europa.eu/commission/com…
Late 1990: large platforms “emerged and started organizing the internet for what would soon become millions of users around the world.” For 1st time "the platforms acted as global “match-makers” B2C. With “ever-growing match-making” platforms have power, & control. 1/1
Power & control are particularly important 4 #socialmediaplatforms. "Clicks matter. The more content is seen and shared, the higher the income from advertising. Hence, it is not so much the quality or the truthfulness of the content that matters but its “virality”" 1/2
Read 19 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
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...
...'#responsible'.

The responses from @cabinetofficeuk & @10DowningStreet were even more appalling; they admitted allowing officials to routinely make copies of #population-scale data "for policy reasons" with no #oversight, no #audit, no defined #IG processes, and no idea of...
Read 13 tweets
And in this single statement 👇 @MattHancock demonstrates not only his profound ignorance, but his underlying thinking - that information about you is a #TradableAsset.

Who "owns" the fact of your relationship with your sister? You? Her? Or your date of birth? Your current age?
Let's not even get started on things like #genomic data (i.e. data derived from your #DNA) which says things not only about you, but your relatives. Who "owns" that?

The reason the #powerful want people to think they "own" their #PersonalData - rather than it being protected...
...by a strong, well-enforced #rights framework - is that they can #force or #fool you into surrendering it, so the data you give them becomes THEIR "#property" to #exploit.

If '#DataIsTheNewOil', as they want you to believe, then what does that make YOU?
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Hmm. Are you 100% certain about that, Dom? @NHSEngland's #PrivacyNotice for the #COVID19DataStore clearly states otherwise 👇

england.nhs.uk/contact-us/pri…

The #dashboards may(?) only show aggregate numbers, but those numbers were generated from individual-level data...
…i.e. from #PersonalData, as is also clearly stated in the #DPIA 👇

england.nhs.uk/wp-content/upl…

Indeed, it says the strategic dashboard "will display ... record level pseudonymised data” and (as a data expert) you will of course know that #pseudonymised data is #personal data…
...and has been *in law*, as well as in practice, since at least May 2018.

@ICOnews published some helpful (draft) guidance just last month that can point you in the right direction if there's any confusion:

ico.org.uk/media/about-th…
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INFOGRAPHIC🔎The #CCP has made collecting #Healthcare data, including genetic information, a national priority. (Thread👇)

Genomic data can be weaponized by #Beijing to target Americans for intelligence and military operations. theepochtimes.com/infographic-cc…
The #CCP's newest five-year plan covering the period until the end of 2025 named “genetic and biotechnology research” as a key area essential to “national security and overall development.” Image
Americans’ DNA information is particularly valuable to #China due to the ethnic diversity of the US population.

This is because varied data sets are more useful in research to identify genetic diseases. Image
Read 9 tweets
Sobre las consecuencias (severas!! emho) para la legislación penal española LECRIM y Ley25/2007 de la STJUE Asuntos C-623/17 y otros #Privacy #ECJ #PersonalData #PrivacyProtection #DataRetention #NationalSecurity (C-511/18,C-512/18,C-520/18 & C-623/17), abro un breve HILO:👇👇
Tras los atentados terroristas cometidos en Madrid y Londres, la UE estimó que una manera de combatir y perseguir eficazmente el terrorismo y el crimen organizado era mediante la retención de datos de telecomunicaciones...
....para facilitar la prevención, investigación y enjuiciamiento del terrorismo y de otras formas de delincuencia grave. Se aprobó la Directiva 2006/24/CE sobre conservación de datos, muy criticada desde su origen.
Read 21 tweets
So let's unpack this.

We hear a lot about "#dashboards"; we were even promised sight of one, back in March* - though we've not seen it yet.

But what are they, in reality?

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*healthtech.blog.gov.uk/2020/03/28/the… ImageImage
Well, for starters, we know quite a bit about @NHSEngland's 'dashboard(s)': back in March, @MattHancock gave it powers to DEMAND confidential patient information from care providers*, for (broadly defined) "#COVID19 purposes"...

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Under the #COPInotices:
gov.uk/government/pub…
...and we know @NHSEngland's hoovering up *at least* 70 different datasets into its #DataStore (the list at data.england.nhs.uk/covid-19/ is no longer comprehensive due to the controversial contents of some of the datasets).

As its "#PrivacyNotice" points out,
england.nhs.uk/contact-us/pri… Image
Read 13 tweets
Hmm.

So, on the one hand we have the Gov't #statisticians, who wish we all had ID cards but who'll carry on using our #PersonalData for administrative ends, while 'exploring' privacy:
gov.uk/government/pub…

And on the other, we have @PalantirTech...

Image
...meanwhile, @CabinetOffice tries recruiting a patsy to front Cummings' data-driven shit-show:


The commercials of which'll be overseen by 'Centres of Expertise' that not only don't understand (or protect) #IP, but which can't even agree on a #value...
...for our #data, despite millions spent on consultants trying get a consistent answer (they liked).

And #ethics? Well, it's quite clear we won't be getting any of those from @cdei:



...which brings us back to the statisticians:

Read 4 tweets
*sigh*

Again with the "#anonymised" fig leaf*?!

Anyone not getting that the NHS patients' data that's being shared is still #PersonalData, NOT #anonymous, should read:

1) The law or, at the very least, the regulator's explanation: ico.org.uk/for-organisati…

2) The contracts...
...which literally put in writing that companies ARE getting access to "#Sensitive #PersonalData". See, e.g. p48 of the @faculty_ai contract: cdn-prod.opendemocracy.net/media/document… - and just think for a moment how programmes like, e.g. #TestandTrace could work *without* identifiable data.
3) If (1)'s too abstract, maybe try the worked examples under "Misunderstanding the 'birthday attack'" in this piece we wrote in 2015:
medconfidential.org/2015/medconfid… - which are just as true and relevant in 2020.

Plus, as of May 2018, it's the law of course; see (1) again.
Read 3 tweets
There's a big difference between HAVING data at this level of #granularity, and PUBLISHING it.

Providing #age, #sex and street #address is not "#anonymised"; more like mildly #deidentified - and almost certainly still #PersonalData.

What the UK's "getting wrong" is a failure...
...to adequately #test - and further, a failure to get (positive) test results to where they are NEEDED.

Would you prefer your #COVID19 #diagnosis to be #published, or to get to you, your #GPrecord and to the #PublicHealth teams who are the ones having to manage things locally?
Data is not magic, and to be useful it must be done right.

Greater #transparency of the #systems, their #performance, and the people who are #using our data (and for what) would inspire greater #trust than putting 300,000+ people's on the web.

Assuming things were working, ofc.
Read 4 tweets
Quick answer: #rights. Did the work on this well over a decade ago, before #GDPR was even a twinkle in Jan's eye.

Longer answer: '#ownership' (just like rights) doesn't get you shit if it ain't #enforceable / #enforced *in practice*. Hence all the current effort going into...
...#redress - e.g. Lloyd vs @Google, and the tsunami behind that.

But a new FIELD of law (e.g. #InformationalPrivity*) may be required, 'cos it turns out treating #people and their #relationships as #property is as bad as treating 'em as #subjects...

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*infiniteideasmachine.com/2017/03/text-o…
...not #sovereigns of their data.

(Not forgetting that - on the evidence of human behaviour, power imbalances, etc. - many, if not most, wouldn't relish or even know what to do with such sovereign #responsibility, much less be able to wield it outside a #rights framework.)
Read 4 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

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