Thread by @EinsteinsAttic

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…

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?

https://twitter.com/EinsteinsAttic/status/1587413103125311488

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?

https://twitter.com/GeoffSchrecker/status/1583428811349032960

We have yet to see the “new” rules that @NHSEngland will operate, what the #governance will be, and what loopholes the special interests they’ve shared details with have lobbied for. (The first people in the queue always being the least #trustworthy and the most #opportunist...)

It remains to be seen if @NHSEngland will ignore the #NationalDataOptOut – when you opt out of data being used for Research & Planning, will they respect that, or will they use a #loophole to avoid respecting your choice?

Today 👇 gave a strong hint...

https://twitter.com/EinsteinsAttic/status/1587421498427543552

Of course, the best way to know how your data will be used NEXT month is to see how it was used LAST month.

And while we have no insight into what decisions the post-#takeover @NHSEngland will take around patients' #data, we can look at what its been doing recently...

Nothing @NHSDigital does is without @NHSEngland approval, but when things go wrong NHSE always tries #blaming others. In this case that seems to be blaming GPs for not knowing what NHSD calls things, and blaming patients for reading what NHSE wrote down:

digital.nhs.uk/blog/data-poin…

While this blog post contains many of the right words - some of them even in the right order - the underlying thrust of it epitomises the '@BorisJohnson theory of #governance', i.e. "We’re all good chaps, so the rules don’t apply to us"...

...and so over time, "We’ll only hire good chaps, so #disseminating the full national GP dataset will be fine," became "It’s us doing it, so what the public are told doesn’t matter".

It's thinking like this that destroyed the #HSCIC brand in 2014, and the same thinking that...

...came close to destroying the @NHSDigital brand in 2021, with #GPDPR.

And now, in 2022, @NHSEngland - which was behind both schemes, and is in the process of 'swallowing' NHSD - has no-one left to blame but itself. Which, of course, it will never do.

That we use the word “sell” is why @NHSEngland blacklisted us from all of the #GPDPR groups. So, of course, they’re making the same mistakes again - even though, put to debate by @useMYdata, the vast majority tend to agree patients' data *is* #sold:

usemydata.org.uk/content_db.php…

Hence we offer a ‘cookie banner with a difference’ 👇 on theysolditanyway.com for anyone looking at the webpage whose objection to the word “#sold” outweighs their institutional integrity.

The first step to recovery, and restitution, is admitting you have a problem.

Despite what some trying to justify their actions may claim, @medConfidential has pointed out repeatedly* that it's ENTIRELY POSSIBLE to have #consensual, #safe, and #transparent handling of GP and hospital data...

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*Even DURING the last GP data grab:

https://twitter.com/medConfidential/status/1410891618761293825

...but HOW #consensual, #safe, and #transparent data handling will be achieved by teams whose first priority is covering their own arses - rather than upholding the #integrity of the NHS’s #obligations and #commitments to patients - is something *THEY* have to demonstrate.

This is the same way that #EdenfieldCentre happened, and how #WinterbourneView happened too: the #groupthink of multiple mid-level admins who considered it more important to protect the #reputation of the #institution than to do the right thing - and the systemic damage...

...caused by the #CoverUp, like undermining #trust across the board, was in some ways even worse than what they tried to hide.

Does any of this sound familiar to #caredotdata veterans? (Or at least, those who learned something?)

On #trust 👇 the Goldacre Review said we don't have #consensual, #safe, or #transparent handling of hospital or GP data today. And that before someone gets more data to handle, they should show they are capable of handling properly what they already have:

gov.uk/government/pub…

So the fundamental question for all those working in and with NHS patients' #HealthData is quite simple:

Will *YOUR* team be more honest with patients about failings, or will it try to deceive and cover them up?

The tone of 'reflective' blog posts, and the unforced imprecision* of formerly reliable sources of information suggest the culture of #CoverUp hasn't ended...

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*This 👇 from @Patient_Data:

understandingpatientdata.org.uk/sites/default/…

really shouldn't have needed this:

medconfidential.org/wp-content/upl…

...and at the centre, institutional #secrecy is - as it always has been - a #CHOICE.

But different #choices CAN be made, with a different institutional culture, under a different Government.

Whether they will remains to be seen.

And while NHS bodies may like to talk about how they meet their ‘#KeyPerformanceIindicators’, that they don’t have a #KPI for respecting patient #dissent, means they ignore it routinely:

https://twitter.com/EinsteinsAttic/status/1587423326384816130

While speaking of perpetuating dangerous practices, it'd be remiss not to refer to the "nation’s leading institute" of continuing dangerous data practices, @HDR_UK.

At Nottingham, HDR commissioned someone to do the equivalent of storing #landmines in school #playgrounds...

...saying it’s as 'safe' as possible - but it won't be them who are harmed when something #explodes:

medconfidential.org/wp-content/upl…

Or the recently updated #PRIAM report, which shows an 'unusually nuanced' understanding of the intricacies of the #FiveSafes:

dareuk.org.uk/sprint-exempla…

But at least they published something - we’re still waiting for #TREEHOOSE to publish how it proposes to allow #commercial customers to #hide their code from #TRE owners, because what its customers do is so controversial they must hide it from everyone!

dareuk.org.uk/sprint-exempla…

FFS. It’s not "[Y]OUR DATA", @HDR_UK and Dundee!

It’s NHS PATIENTS' DATA, that you're *supposed* to be using for #PublicBenefit - not the #secret benefit of your #commercial partners.

And precisely *which* of Dundee's commercial partners is it that are telling them this? 🤔

What ELSE has Dundee done with patients’ data that it's happy for its #commercial partners to keep "confidential"?

Does it work with @IQVIA_global, formerly #IMSHealth?

https://twitter.com/EinsteinsAttic/status/1426850950682120194

And whattabout the non-consensual mess, 'publishing' #GPdata from the #DataLoch?

Perhaps @HDR_UK’s Dundee-based Chief Executive will explain, before doling out more public cash to a bunch of pet “driver projects”?

eventbrite.co.uk/e/dare-uk-driv…

Or perhaps not...

...it would, after all, be foolhardy to expect full and frank disclosure in a pervasive culture of cover up.

HDR tells academics they can fill in its Gateway form to get access to data; wasting their time because it doesn’t ask all of the questions actually needed for access 🤦‍♂️

Most everything @HDR_UK touches is degraded by that touch.

That HDR's roadmap shows it thinks it should run @Patient_Data would have concerned us - but that ship has sailed, and promptly sank. Which is sad, as it was a good brand with a good team.

But everything turns to dust.

As per the new PM’s lead, @medConfidential believes it *is* possible to WORK TOWARDS demonstrating #trustworthiness.

@NHSEngland's Chief Exec could say that this is what NHSE will do – and it wouldn't necessarily even be a change of position, at the top of the organisation...

...but SAYING so has to be followed by ACTIONS across the whole organisation - and @NHSEngland’s current actions around GP & hospital data, let alone #FDP & continued lack of #transparency around #Palantir, are nowhere near compatible with trying to demonstrate #trustworthiness.