Thread by @EinsteinsAttic

Here's a fun #NINO - the UK's National Insurance Number - [Thread] to start the weekend 👇

Maybe I should do an #NHSnumber one sometime? It's a fascinating story, which (ironically) starts with these...

https://twitter.com/bruntonspall/status/1405985400041218056

[With thanks to @guy_herbert, @TomSamaki, @PrivacyMatters & others for encouragement!]

Before I start a geeky 'deep dive' on the #NHSnumber, to provide some (personal/professional) context that will hopefully become apparent, I'll just drop these two images here:

So, to begin.

After the Second World War, in a time when we started to think (again) what a #civilised society would be, and when our leaders tried to agree #principles like #UDHR that might prevent the recurrence of genocide, and support #dignity and #HumanRights for all...

...the political leaders of Britain played an active part.

Indeed, #Churchill not only proposed but went on to found the #CouncilOfEurope with other European leaders, helping draft then ratifying #UDHR in '48 - which directly led to #ECHR in '51:

https://twitter.com/EinsteinsAttic/status/1227605444908240896?s=20

That same year (1951) #WWII ID cards were abolished, after Clarence #Willcock, challenged by PC #Muckle in late 1950, refused to show his #IDcard, purportedly saying: "I'm a Liberal and I am against this sort of thing." Lord #Goddard agreed at appeal, and when Churchill became...

...PM again, he abolished the #IDcards that had been imposed during the War (for wartime purposes) which all the #TinpotBureaucrats and #PettyHitlers so desperately wanted everyone to have to keep using.

[A lesson we'd do well to remember in times of #COVID!]

So the ID cards...

...were collected up and stored in the former Victorian spa hotel in Southport, Merseyside out of which #NationalRegistration and #rationing had been run during the War.

That place was #SmedleyHydro, and it's the building shown in the two photos near the top of this [Thread]...

Meanwhile, and generally acknowledged to have arisen out of the #BeveridgeReport in '42:

archive.org/details/in.ern…

on 5 July 1948, #AneurinBevan launched the new #NationalHealthService, acknowledging in @TheLancet that "It has not had an altogether trouble-free gestation"...

...and the very first #NHSnumbers people were assigned?

They were your #WWII #IDcard number - plus an additional digit: 1 for Dad; 2 for Mum; 3, 4, 5 and so on for the kids.

Issued from #SmedleyHydro, which continues to administer #NHSnumbers to this day...

Of course, Smedley's not just doing #NHSnumbers, as you can see from the signs outside its gates.

In 1991 the #GeneralRegisterOffice for births, deaths and marriages was relocated from London to #SmedleyHydro - and @ukhomeoffice has an outpost there as well, which was exposed...

...by the #PartridgeReport, following the last attempted #GPdata grab, i.e. #caredata, in 2014.

The names on the sign were different, though: the #NHS #InformationCentre having become the #HealthandSocialCareInformationCentre (#HSCIC), then then @NHSDigital and, due to some...

...other campaigning I'd been involved in - @NO2ID: Stop the #DatabaseState! - @ukhomeoffice's short-lived '#Identity & Passport Service' from which the #Blair Gov't had tried to issue #IDcards (again) had reverted back to the good old '@HM_Passport Office', which wisely seems...

...to be steering WELL clear of this Government's #VaccinePassport obsession - something that unfortunately cannot be said of @MattHancock's cavalier tech unit, @NHSX, and the #NHSApp. (More of which later.)

But back to #NHSnumbers, which muddled along from the late 1940s...

...until the 1990s - 40 years! - when they were computerised with #CHRIS*.

Now, in the 2020s, they are digitally metamorphosing (metastasising?) into "#NHSlogin" - on which we're keeping a watchful eye!

What many may not...

__
*Good backgrounder here: closer.ac.uk/wp-content/upl…

...realise is their #NHSnumber is the key to looking them up on #PDS, the #PersonalDemographicsService, run by @NHSDigital:

digital.nhs.uk/services/demog…

Which, despite saying it does (naughty, naughty!) DOESN'T provide a "full list of data items held on the PDS" - just some of them:

You can however see the #PDS fields currently exposed via #API, which are interesting - if only to note what HASN'T yet been implemented in the more recent #FHIR one.

Can you spot it?

How it started How it's going

...yup, you're right!

For some reason patients' #consent* doesn't appear to be a priority 🤦🏻‍♂️🤔

(Yet another reason why the '#NationalDataOptOut' is not yet 'fit for purpose'...)

__
*References:

PDS #HL7_V3 API:
digital.nhs.uk/developer/api-…

PDS #FHIR API:
digital.nhs.uk/developer/api-…

So, to tie a few things together and ask a few questions:

1) Why is it, if the #NHS issues me an #IDnumber against which it holds my #personal details, and with which it tags all my #clinical details, that *I* cannot see all of the former - nor all of the latter as well?

👇👇👇

[N.B. I appreciate there can be risks and limitations around people's understanding of their own clinical records; and risks of coerced access to both. I'm not suggesting there are simple answers here.]

2) Why has patient #choice & #control (e.g. #consent/#dissent) not been...

...prioritised on the development paths for #NHSnumbers/#NHSlogin and the #NHSapp and #PDS #FHIR #API?

Ministers may disingenuously say "Patients own their own data" - but if it's ours then why can't we SEE it, and see exactly HOW it's being used? And why do they think they...

...can take a copy of our (#GP) #data without seeking everyone's #permission, for a whole bunch of purposes that aren't anything to do with our own care, that they're not being #honest and #open about?

[Sorry, that was three questions bundled up in one unnumbered one!]

I hope this has been interesting/useful.

A couple of final points before I get some lunch:

1) You CANNOT opt out of #PDS, but it is possible for #access to your details to be #restricted, e.g. to protect the location of patients who may be at risk:

digital.nhs.uk/services/demog…

2) While deeply flawed, the #NationalDataOptOut *is* still worth doing - @NHSDigital is going to have to #fix it, and #NHSproviders are going to have to #respect it (in due course...)

3) As ever, if you have concerns, you do have #rights and #choices:

medconfidential.org/how-to-opt-out/

POSTSCRIPT: While this started as a historical ramble, it prompted an interesting reply that could address one of the big issues* of the current, deliberately difficult #GPdata opt-out process:

https://twitter.com/EinsteinsAttic/status/1406278691873767426?s=20

__
*How do I get a #receipt when my #Type1 opt-out is done?

And what relevance does this have for the #future?

Well, if you didn't already know, the Government is about to introduce legislation for its SECOND major top-down #reorganisation of the #NHS in a decade...

#Ministers, @DHSCgovuk, @NHSEngland - you know, the body building @PalantirTech into the heart of its systems, the outfit @didoharding wants to run - and latterly @NHSX have been planning this for YEARS.

Check our #NHS #LongTermPlan evidence *from 2019*:

data.parliament.uk/WrittenEvidenc…

And at the #informational heart of that proposal - which will divide the #NHS in England into nicely-digestible chunks, called "#IntegratedCareSystems" (ICS) - lies...

Ta-daa!

The "#SharedCareRecord" (SCR)!!

But wait! I thought we already HAD something called an #SCR? 🤔

We do. It's the #SummaryCareRecord - for which we - @NO2ID, #TBOO & others - fought (and won) an opt-out in 2006 👇 and continued to campaign for until, after a few years, the #NHS and Government agreed it would be PROPERLY COMMUNICATED.

web.archive.org/web/2007011219…

N.B. You can *still* opt out of having a #SummaryCareRecord 👇though I WOULDN'T recommend it - as your #SCR is used for your own medical care and *not* for "Research & Planning" or other 'secondary uses'.

Though you might want to check what's in it...

digital.nhs.uk/services/summa…

...given - for entirely valid #healthcare reasons, early in the #pandemic - a whole bunch of "Additional Information" was added to everyone's #SCR 👇 without telling them.

Of course, now that info is in there, different groups are lobbying to keep it...

digital.nhs.uk/services/summa…

...but, as I say, you still have choices - one of which is to insist that your *Summary* Care Record reverts to being just that 👇 i.e. a #summary.

Here's the form you need to do that:

digital.nhs.uk/services/summa…

And we'll see what happens with the rest, in due course...

Ooer! Is that the time??

I'd better wrap up and start cooking supper - but, before I go, here's what Sam and I wrote on those impending "#SharedCareRecords" back in March:

medconfidential.org/2021/shared-ca…

Real gluttons for punishment might like the 'Details documents' at the bottom: