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UK citizens take note. Seems the government would rather you didn’t know and are rushing it through.

https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england
 

This makes me suspicious. While I have no objections to my data being used for genuine research purposes, I don’t believe that is what this is about.   Certainly I don’t trust this government with my data. So I will be opting out for the time being.  I believe this has to be done directly with your GP surgery.

In these times of GDPR I find it quite astonishing that it is even legal without the express (informed) consent of each patient.

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On a similar note, we were shocked to discover that your medical records are not available country wide. A (truly lovely) neighbour was visiting his son and family, and effectively died, but his son managed to keep him alive until and ambulance arrived. But they had absolutely no idea about his medical history. Luckily his son knew enough, and soon got the blanks filled in. 

Not sure if your records are kept for use by your local healthcare group, or something else. But it is hopeless if any hospital or even doctor can't access your records.

Seems the new scheme is a bit iffy, you can opt out of sharing beyond use for your direct care. That is all that is needed, anything else ought to be anonymous.

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Many years ago, therre was a PLAN for a national medical database for hospitals.   The result was something called LORENZO (it's not an acronym, AFAIK) and it is RUBBISH!   It was refused by many hospitals, but accepted as a 'free' gift by mine.    Now, I'm fan of digitalisation, and tried, hard, to use it in my clinic.    Becauee it was unfamiliar, I started by reducing the number of patients I saw by 25%.     OK, there's always a learning curve, but despite my enthusiasm and previous digital familiarity, I could not regain those lost appointments and after six months I went back to paper.   And more patients.

This was predicted by a friend, a computing consultant, who told me when discussing the National Plan, said, "Be afraid, very afraid"      Not of data theft, but of chaos.   The main problem was that the NHS got in very late.      GPs had a multiplicity of systems, other hospital systems were available, and better, the Manchester Royal had one.   Dammit, I  wrote one! (Anaesthesia reciord system)   But like early VCR systems, they are all incompatible, and AFAIK still are.    

The system we are using for vaccination is a National one, and that includes the ID detaails of everyone with an NHS number.      That's why you get asked for your name and birthdate, which two data are usually enough to ID anyone.   But computers glich, and I've been told that my local client lives in Northumberland or the Isle of Man, so address is also asked, as a check.     Then it's supposed to send the Vax data to the GP's system, but I dont know how welle that works.

'Real-time', on the job, data, especially fopr paramedics in the field?    Not yet, by a long way!

John

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A national system of medical records accessible from anywhere within the NHS for the purposes of patient care would be an excellent thing which I would support.

That is not what we are talking about though. It’s basically a way to monetise our data, at this point without even asking our permission, and it’s far from clear who will be able to access what and where the money generated would go.

One suspects Tory party donors would be first in line...... Can you tell I have trust issues with this government? :pinch:

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 With younger folk putting their life's details minute by minute on F/b, T/ter . etc I doubt this will distress the sub-middle aged too much. They sign up for free genome testing, signing away that data.  If NHS  data  are fully anonymised I'm not worried at present, but it depends upon what "research" means. If it is for science, fine. But "research" could mean data-mining for advertising in which case its nbg anonymising my name if the phone number is retained. The devil is in the detail.

 

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It is troublesome.

The ability for researchers to scan the data could be a significant help in spotting patterns/relationships/trends etc in health. But that would be easily achieved with anonymous data (first part of postcode, approx age, sex, ethnicity etc needed) 

I guess the private companies are after that data to do just that, but sounds as if they are after a bit more too? 

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Posted (edited)

Perhaps it would help people decide if they looked what their GP record holds.

If you download the "NHS App" onto your phone, then you can! 

It's available for iPhone and Android.  Under "Your Health" (bottom line) it offers to "Share your Covid-19 status"  for travelling purposes (in other words, acts as a VaxPassport), "Check your Covid-19 vaccine record", GP Health Record, "Manage your organ donation decision", and "Choose if data from your health record is used for research and planning".   The last includes an overview and a detailed discussion, leading to a page where you may record your wishes, which you may change at any time.

John

 

Edited by JohnD
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Thanks for the prod John.  I've been meaning to do this for a while and have now done it.

It works pretty well - and for me it worked instantly as I already had remote access permission from the surgery, though previously I've been accessing via a portal on my PC.

Even easier to check my PSA results now...... :ermm:

However, as regards the original point of the post, the opt-out option you mention is for the type two, national opt out.  The type 1, we are talking about here can only be done directly with your GP practice using "old methods" (good old paper!!)

 

I found this earlier.....

https://medconfidential.org/wp-content/uploads/2021/05/Type_1_opt-out_letter.pdf

......which should do the trick, though I will be contacting my surgery tomorrow to see what their "procedure" is - if they even have one - which I doubt, they haven't been given much time to deal with it - my beef is not with them.

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Hi all

I see in the FT today (not that I read it just saw the headline) that the Govmnt have had to delay implementation for health data “grab” until September, only because they were threatened with an injunction. So a little more time to make sure they don’t get your notes.

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If - IF - the records were anonymised, would anyone object?   

Is it that people fear that 'commercial interests' would use the same data?     Is that fear valid, when those interests are most likely to be pharmaceutical companies, who research and provide all the drugs we use today?   'Big Pharma' isn't without sin, and tends to research and market products that will make them a profit, rather than drugs that could treat rare diseases, or drugs that could cure common diseases in one dose, preferring long term sales.  But they do! EG "Zolgensma", which may cure Spinal Muscular Atrophy and keep babies alive and well, but costs £1.8 million for a single dose!

If we have been allowed more time to discuss this proposal, what safeguards would you want on your medical records?   The benefits to be gained from 'big data' epidemiology are undoubted! 

John

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8 minutes ago, JohnD said:

If - IF - the records were anonymised, would anyone object?   

 

I think the overlying idea on what big Phama do is not wrong at all. There’s a lot of investment which turns into not a lot and we don’t see all the positives they have to offer either because it won’t make them money or good headlines but they have improved countless lives and access to such a large haul of historic and current data would be a gold mine for them.

on the issue of data that is a very big IF even when anonymised, we’ve all seen how in other areas supposedly anonymous  data has been obtained and subsequently missed used in the past. It would have to be double or treble blinded for me to be happy.

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Double ot treble blinded?       As we only have two eyes....   But that is a jokey quibble!

How would you define that, John?      Remove your name, certainly.    Remove your postal address and email, of course.    But to remove where you live completely might make the data less useful.      Would you agree to region?   County?  Town or even electoral ward, to choose a smaller but well defined geographical area?  Wouwld you agree to narrow it down further, to, say postcode.    The first part of that, the "outward" code is about the same as "Town", but of the second part, the "Inward" code, the number defines the sector and may contain 10,000 people, while the letters are the 'Unit' which may have only a hundred people in it.    Some postcodes refer to a single house!   So, for instance, would the Outward code plus the Inward number be acceptable?

Then what's your job?    That is important in epidemiology.   The International Classification of Occupations (https://en.wikipedia.org/wiki/International_Standard_Classification_of_Occupations) runs to 10 major Groups and a listing runs to nearly 600 pages.   It generates a three figure code, for instance, 'office worker', of whom thee ae very many,  is in Group 4 and would have a code 4XY where X and Y are other sub-group numbers.   Then 'magician', of whom there are few,  is under 'creative artists', code 265, which includes all actors, actual artists and other performers so will be a rather larger number of people, and less easy to find.     

So which parts of your record would you want removed, and which would be OK if represented by a general, less specific  and possibly partial coding system?

JOhn

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Anonymised data that excludes post-code, age, sex, occupation, ethnicity would lessen utility to researchers. Yet those three pieces of information would allow individuals to  be identified even if names were redacted. To me it comes down to accepting  that researchers are likely to  find the data useful and if I am identifiable so be it. What would p*ss me would be scammers using hacked data, and that must surely by now be accepted as far from zero risk. If the data suddenly threw up a new clue to curing my afflictions the benefit clearly would outweight the risk of scammers acting against my interest. Those who have no health issues will perceive little benefit from researchand argue against data release  I fall into the old.diseased category and am not too concerned. Peter

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I suppsoe, Peter, that if your scammer has enough data they can find someone specific, but I suggested above how to kaje that difficult with postcode and occupation, by making any category contain a large number.   Age, could be generalised to decade, and no need to generalise sex, as half the population belongs to one or the other, although I believe that nowadays, there are considered to be five genders (?)!   

Ethnicity - as a vaccinator, I routinely ask this question.     I must have done a thousand or more by now, and I've only once had any objection to my recording it, and that was a white, middle aged man! We use the same list as the Gov.uk does - it probably goes to them anyway, because as I say to my clients, it's because some communities have a poor take up of vaccine, and there is a need to know what and where they are, so that information and reassurance can be directed there.

This list from ther Gov.uk website isn't quite the same, but nearly:

White   English, Welsh, Scottish, Northern Irish or British
   Irish
   Gypsy or Irish Traveller
   Any other White background
Mixed or Multiple ethnic groups
   White and Black Caribbean
  White and Black African
   White and Asian
   Any other Mixed or Multiple ethnic background
   Asian or Asian British
Indian
Pakistani
Bangladeshi
Chinese
Any other Asian background
Black, African, Caribbean or Black British
African
Caribbean
Any other Black, African or Caribbean background
Arab
Any other ethnic group.

Since those are such wide groups, could they really betray us to the scammers?   I suppose if you are "The only gay in the village" then maybe, but ...

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2 hours ago, JohnD said:

Double ot treble blinded?       As we only have two eyes....   But that is a jokey quibble!

 

Point taken John, I think what I was trying to say was as others have said. No problem with the researchers having good defining info on the source of the data ....male....big, small etc and the other info re life style and place etc are important.

They would have to find a way to ensure identifying the person from a data leakage was impossible.

I do believe the data is a gold mine to the researchers as I said earlier.

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It's good that the "grab" has been delayed, though I suspect the government has rolled over without much fuss in the hope that the profile will stay low and they can just carry on as intended in September.

For me there are a number of aspects to this.

- It's my personal data, some of it very personal and I expect to be given say whether it's kept for my medical care only or pooled for the greater good.  I expect to to be asked in a clear and timely fashion and given clear honest information about what might happen to it so I can inform my decision.  I expect the all those affected to be given the same opportunities.

This absolutely wasn't and still mostly isn't happening.  The extension does at least give more time for people to find out about the whole thing and do their homework.  However. the "homework" they are being directed to is simplistic and misleading - and intentionally so I fear.

What is still completely lacking is any clarity about how this potentially vast resource will be managed.  That is, who would be responsible for keeping it safe and deciding who can access it and for what purpose.  Will they be an independent body?  If not, what might their motivations be? Who would be able to access it and which parts of it.  Will the data remain under the control of NHS digital, with access to it allowed in a carefully controlled manner, or will copies of it/parts of it be sold off.  The latter would always be totally unacceptable and control of the sold-off parts would be lost.   How will it be kept safe from the data thieves (government has a poor record in this regard!)

Also, this would be (already is) a resource of immense value.  It belongs to UK citizens both because it's their personal history, but also because they have paid for it's collection with their taxes.  Therefore the money made from it's sale should reflect it's value and be used for their benefit - put back directly into the NHS I suggest. Maybe initially to provide a joined-up nationwide system so that if I were to fall ill in Newcastle, my GP notes, my hospital histories from Yeovil, Guys, Guildford, Taunton etc can be accessed. 

Certainly it should not be leaking into the greedy pockets of Twat Bancock's neighbors & mates or random old Etonians who might bung the tories a few quid for wallpaper.

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Nick,

I applaud your points, especially on using the data as a cash-valuable NHS asset.   And when you say "I expect to to be asked in a clear and timely fashion and given clear honest information about what might happen to it so I can inform my decision" is that on each time that a researcher wishes to access data that might include yours?       To ask the UK populationfor permission for every survey  would be unwieldy, so as you say, a trusted and authoritative person (a 'Czar'??) or committee is needed who can make the decisoon on our behalf.

I belive that there is a great willingness in the UK for this - many have volunteered information to studies like Zoe/Covid, and to take part in other data driven studies, but those rode on the back of pandemic fervour.

John

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21 minutes ago, JohnD said:

is that on each time that a researcher wishes to access data that might include yours?

No, it’s a one time thing to allow access to my data - but that’s why it’s critical that there is a strong, trustworthy framework in place to maintain control and make sure that there is no moving of the goalposts when it’s too late. No, “oh the government has decided that it’s fine for the health insurance industry to have free reign in you data”  5 years down the line (yeah, I think the current lot entirely capable of that kind of behaviour)

28 minutes ago, JohnD said:

many have volunteered information to studies like Zoe/Covid, and to take part in other data driven studies, but those rode on the back of pandemic fervour.

And yes, the propaganda (there is no other word for it) put out to support this grab is undoubtedly trying to ride the Covid wave too

I have no issue with signing up to specific studies. Have done in the past and likely will in the future.

 

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is that change.org kosha.   I have just been on it to sign the petition.

Before that happened I go diverted and they asked for money. Having coughed up a £10'er the petition disappeared and I'm sure I haven't logged into it.

Looks like they are all getting on the bandwagon to fleece me.

 

Roger

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