Author Topic: NHS data sharing  (Read 515 times)

Fiz

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NHS data sharing
« on: 23 Jun 2021 07:02AM »
The idea of the NHS data sharing is overall a good idea but unfortunately their method is faulty. The idea is that the NHS wants to know the general health of the nation so want to gather the facts and figures from all patients via GP internet systems and look at the raw data as to the numbers of people with all the various health problems so they can see where the investment needs to go. Fantastic idea however whereas the data is separated from any ID of the patient and stored separately, the system does make it possible to relink the data to the NHS number it originated from at some point and by someone and understandably that has upset the public. Contrary to false news items on the data sharing the government have promised that no data would be sold. 

The idea was first muted and almost came about in 2013 and there was the clear option to opt out, which I did. As data sharing now looks like it will happen I have checked my settings and I am still set as opting out of sharing my NHS data so my information won't be gathered. If you want to opt out you can do that here if you didn't opt out in 2013

https://digital.nhs.uk/services/national-data-opt-out

The idea was good and if there had been no possible way to link the information back to me at any time by taking the information but no identifying information like my NHS number or date of birth then they could have had it but as it is, they can't. I don't trust them not to relink the information to me. 

What a shame that the government weren't prepared to only take information with no identifiers. Opportunity lost by the government as many will choose to opt out.

lankou

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Re: NHS data sharing
« Reply #1 on: 23 Jun 2021 08:00AM »
My wife and I have both opted out as we have no trust at all in the private company managing the database.

Sunny Clouds

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Re: NHS data sharing
« Reply #2 on: 23 Jun 2021 08:11AM »
I have another reason for thinking it's a bad idea - I don't trust the accuracy of the data.

A couple of years back, I got a printout from my GP's computer of ongoing conditions, showing date of first diagnosis. 

Of my most disabling conditions, an hereditary congenital one was not mentioned, a condition I've had for fifty years was shown diagnosed twenty years ago, a condition I've had for forty years wasn't mentioned, a condition I've had for 25 years wasn't mentioned, my hearing loss was shown as fifty years ago and 'mild' with no update to severe etc.

An eye condition was mentioned, which could be taken by someone using the data as meaning that that was the only significant eye problem, but I have several worse eye problems that weren't mentioned.

It mentioned a food intolerance (unspecified) but did not show any allergies or adverse effects of medication.

I could go on, but you get the picture.  That sort of thing is enough of a nightmare when claiming benefits, but picture it in the context of research.

Then again, I know of serious incorrect information in both my GP notes and hospital trust notes.  I gave up trying to get it corrected or deleted years ago, and it's the main reason I stopped trying to find work.

I'm glad GPs are trying to speak out on this but the government will find a way to go ahead because of two things - firstly, in due course it will sell data, and secondly, when senior politicians finish privatising the potentially profitable parts of the NHS, the data will be of use to their friends/connections.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

ditchdwellers

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Re: NHS data sharing
« Reply #3 on: 23 Jun 2021 11:46AM »
Thanks for the link Fiz, I'm going to opt out too. Like everyone else, I really don't trust the government with data protection or management. They always screw it up, and involving a private company just rings alarm bells.

Sunny Clouds

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Re: NHS data sharing
« Reply #4 on: 23 Jun 2021 12:06PM »
I previously opted out, but I don't trust that not to have gone missing or whatever, so I've done both the letter to the GP thing and the online thing at the NHS site, which I think is more general.

I oscillate between thinking "What's the point when there's already so much information about me on databases?" and "Better to try than give up."  So somehow I'm still fighting back.

As I type this, something else occurs to me about this.  I just came across a Sky news item on Youtube about the WHO apparently saying masks and social distancing are here to stay. I scrolled down to the comments.  The inevitable stuff about plandemics and Bill Gates etc.

With so many people out there thinking that the vaccination's all about injecting us with a tracking device or something, will this thing about our NHS info being passed on to whoever reinforce antivaxxers' suspicions, or will concerns about it be written off as 'just another conspiracy theory'?  I suppose the government had nothing to lose by taking a gamble on timing it to fit in with the vaccination programme and surgeries largely closed to physical visits.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

On the edge

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Re: NHS data sharing
« Reply #5 on: 24 Jun 2021 10:17AM »
I have another reason for thinking it's a bad idea - I don't trust the accuracy of the data.

A couple of years back, I got a printout from my GP's computer of ongoing conditions, showing date of first diagnosis. 

Of my most disabling conditions, an hereditary congenital one was not mentioned, a condition I've had for fifty years was shown diagnosed twenty years ago, a condition I've had for forty years wasn't mentioned, a condition I've had for 25 years wasn't mentioned, my hearing loss was shown as fifty years ago and 'mild' with no update to severe etc.

An eye condition was mentioned, which could be taken by someone using the data as meaning that that was the only significant eye problem, but I have several worse eye problems that weren't mentioned.

It mentioned a food intolerance (unspecified) but did not show any allergies or adverse effects of medication.

I could go on, but you get the picture.  That sort of thing is enough of a nightmare when claiming benefits, but picture it in the context of research.

Then again, I know of serious incorrect information in both my GP notes and hospital trust notes.  I gave up trying to get it corrected or deleted years ago, and it's the main reason I stopped trying to find work.

I'm glad GPs are trying to speak out on this but the government will find a way to go ahead because of two things - firstly, in due course it will sell data, and secondly, when senior politicians finish privatising the potentially profitable parts of the NHS, the data will be of use to their friends/connections.
I agree, my GP records show no mention of the fact I have been profound deaf for 50 YEARS! It appears as I moved home a few times, records weren't sent on completely and they were unable to obtain them because of time limits or something.  I also asked for my medical record to put this on the cover/head of my record, including what type of support would best work, so Dr's knew in advance I might need help following, but it wasn't done either. They are still convinced I can hear because I can talk.  I was told my best approach would be to suggest I was unable to talk and used sign language instead, which I found a disgraceful suggestion, in essence to play 'dumb'.

Fiz

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Re: NHS data sharing
« Reply #6 on: 24 Jun 2021 10:26AM »
😯

ditchdwellers

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Re: NHS data sharing
« Reply #7 on: 24 Jun 2021 11:18AM »
OTE, that's appalling treatment. The attitude is shocking.

Sunny Clouds

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Re: NHS data sharing
« Reply #8 on: 24 Jun 2021 12:19PM »
I remember when I discovered about NHSE Accessible Information Standards and tried to use the requirements to get the help I needed in hospital outpatient clinics.  I was slow to realise I needed to ask a key question "Is there actually a field on your computer for you to enter my communication needs?"  No.  Nor any other needs so far as I can tell.  I haven't bothered to ask my GP - the behaviour of some of his registrars says it all.  They're medically competent and kind but communication can be an issue.  (It's a training practice, so there's a rotation, which I think is annual.)

Given the choice, I'll pick a health professional who's multilingual or used to being somewhere multilingual.  I don't care what their mother tongue is.  English, Welsh, French, Hindi, whatever.  It's the communication mindset.   That or one with a visible or known disability.  Same sort of instinctive adjustment.

In my nearest large general hospital plus some others I've visited, in order to get to the right room at the right time and do so safely, you need good vision, good hearing, and no significant balance or mobility problems. 

I had a discussion a few years back with someone who'd been involved in consultation groups  when the modern building was built and he couldn't see what was wrong with it.  "The patient consultation group really approved that signage?"  I asked, incredulously.  "In that small font and that high up in the air?"  Oh dear, they'd only been considering the sort of font, not the size of it.  After all, why would people with less than 20/20 vision want to get round a hospital?

Contrast that with a much older hospital building I can think of, with quite large signs on the wall at what I'll call roughly head-height, with not much looking up, and coloured lines and coloured doors, which someone even thought, if my memory serves me right, to be very careful with colour blindness, picking different tones as well as different colours, so if you've got red/green or blue/yellow problems, the tones help.

But then they don't see the need to have any seats for people queuing for A&E reception, either.  Well people are either 'disabled' and arrive in special transport with a carer or two or they can stand there for 20 min with nothing to sit on, lean against or grab. 

And if you don't respond when they call your name, even if you've very patiently explained that you need to be called visually, they'll tell you off.  

I do have overlapping problems with my GP surgery.  For instance, I'd been attending for years before discovering my GP has a 'next patient, please' buzzer.

I'd worked on the basis of watching the receptionists for when one picks up the phone, calls a name, sees no one responding, spots me in the small waiting room and beckons me.  I only discovered there was a buzzer when I arrived early once and saw someone by me suddenly look up, stand up and go into the room.  When they came out, after a little bit, someone else did likewise.

But even if it's loud, with so many buzzers, beeps etc. and with my poor sound-discrimination, I wouldn't pick it out.  I hadn't realised I was missing something because the receptionists there don't moan if you don't hear, they smile.  That kindness that goes beyond what is or isn't on the screen makes the difference, doesn't it?

I just typed more, but all of you here would doubtless have oodles of stories to tell about parts of the NHS, including GP services, that don't have systems for ensuring disabled people's needs are asked for, recorded, and provided for.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

On the edge

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Re: NHS data sharing
« Reply #9 on: 25 Jun 2021 11:01AM »
I remember when I discovered about NHSE Accessible Information Standards and tried to use the requirements to get the help I needed in hospital outpatient clinics.  I was slow to realise I needed to ask a key question "Is there actually a field on your computer for you to enter my communication needs?"  No.  Nor any other needs so far as I can tell.  I haven't bothered to ask my GP - the behaviour of some of his registrars says it all.  They're medically competent and kind but communication can be an issue.  (It's a training practice, so there's a rotation, which I think is annual.)

Given the choice, I'll pick a health professional who's multilingual or used to being somewhere multilingual.  I don't care what their mother tongue is.  English, Welsh, French, Hindi, whatever.  It's the communication mindset.  That or one with a visible or known disability.  Same sort of instinctive adjustment.

In my nearest large general hospital plus some others I've visited, in order to get to the right room at the right time and do so safely, you need good vision, good hearing, and no significant balance or mobility problems. 

I had a discussion a few years back with someone who'd been involved in consultation groups  when the modern building was built and he couldn't see what was wrong with it.  "The patient consultation group really approved that signage?"  I asked, incredulously.  "In that small font and that high up in the air?"  Oh dear, they'd only been considering the sort of font, not the size of it.  After all, why would people with less than 20/20 vision want to get round a hospital?

Contrast that with a much older hospital building I can think of, with quite large signs on the wall at what I'll call roughly head-height, with not much looking up, and coloured lines and coloured doors, which someone even thought, if my memory serves me right, to be very careful with colour blindness, picking different tones as well as different colours, so if you've got red/green or blue/yellow problems, the tones help.

But then they don't see the need to have any seats for people queuing for A&E reception, either.  Well people are either 'disabled' and arrive in special transport with a carer or two or they can stand there for 20 min with nothing to sit on, lean against or grab. 

And if you don't respond when they call your name, even if you've very patiently explained that you need to be called visually, they'll tell you off. 

I do have overlapping problems with my GP surgery.  For instance, I'd been attending for years before discovering my GP has a 'next patient, please' buzzer.

I'd worked on the basis of watching the receptionists for when one picks up the phone, calls a name, sees no one responding, spots me in the small waiting room and beckons me.  I only discovered there was a buzzer when I arrived early once and saw someone by me suddenly look up, stand up and go into the room.  When they came out, after a little bit, someone else did likewise.

But even if it's loud, with so many buzzers, beeps etc. and with my poor sound-discrimination, I wouldn't pick it out.  I hadn't realised I was missing something because the receptionists there don't moan if you don't hear, they smile.  That kindness that goes beyond what is or isn't on the screen makes the difference, doesn't it?

I just typed more, but all of you here would doubtless have oodles of stories to tell about parts of the NHS, including GP services, that don't have systems for ensuring disabled people's needs are asked for, recorded, and provided for.
There is space to insert additional support needs, I also contacted the digital firm the NHS used when they started to redesign medical records for faster and more modern access to patient records.  They told me there was plenty of room to do that, but it was up to the NHS itself to fill in those areas of support needs and GP's didn't record them.  GP's may note you e.g. have hearing loss but not what support you used, contact for it, or what support they provide is entered.  There were suggestions they aren't asked to include them by patients and because many e.g. deaf, DON'T use professional support, then, GP's don't include it anyway. 

There is no set requirement in law, medical records must contain support you may need in addition to medical help, they may view it a Social service area, and the NHS is notorious for avoiding support provision to save costs, deaf are well aware of this, as GP's 'support' their right to use what help they feel is best for them to follow.  The fact a Dr may well see it is family, and of concern at gaps being seen, but they say nothing because it saves them money.  I've spent 15 YEARS trying to ban deaf patients from using family support, especially if they do not have any qualifications to show they are adept or skilled at so doing, it goes without saying, a patients privacy and choices can get seriously overridden by family support who may act on what they might think best, and not perhaps what the patient or Dr might.  Family get listed as your 'carer', appointments/phone calls, then get redirected to them and not the patient at all to 'save time'.

After the first few times the deaf patient is well out of the whole thing and the one on one relationships many GP's have to help diagnosis gets more and more remote.  As 'personal support' I would not object to family there, but for consultation and diagnosis I would demand professional and neutral help to ensure family did not leave gaps or, they simply did not follow themselves.  However, the deaf dug in and told me to butt out and stop interfering with their rights.  As a result, listing support has not happened at the NHS they don't want to be seen defying a patient right, and they know it is not going to cost them too!  I said making it a norm to ensure a patients file contains all necessary information is essential, but it would also expose a truism deaf activists keep hiding, in that many (Near 67%), are simply choosing NOT to use qualified support at all.  A fact deaf activists are determined to bury for obvious reasons.

It is then left to individuals to suggest to their GP they want such information to be the FIRST thing a clinic reads on your medical file, as in any emergency the staff won't be surfing through records looking for what support you need, and you may not be conscious anyway.  My partner was rushed into hospital and I immediately asked for support for her being a sign user, I refused to do it for the NHS initially, but I found out her signed support  would not work at night or attend at that time, so I was forced really as a deaf person to act as an interpreter for another deaf person, fortunately I am pretty adept at ensuring I can follow and then go neutral when professionals are there, its then horses for courses.   I suggest I would be one in a 100 deaf who would or could do that. I continue to demand a full professional support set up and oppose other deaf insisting anyone would do and it is up to them.  This ignores those who actually do not have family or friends who can do that.

Just imagine wanting to consult on a sexual issue? and your kids doing the translation, which was one issue and one where one GP allowed a 7yr hearing child to translate.

Sunny Clouds

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Re: NHS data sharing
« Reply #10 on: 25 Jun 2021 12:04PM »
OtE, you summarise the problems for deaf patients so eloquently.

I find the whole issue of who's entitled to speak for, interpret for, or generally help whom presses big buttons in relation to mental conditions as well.

Example, but upside down from yours, as it were, because the support that would have helped me with what I'll call mental interaction with health services would have been family, but I wasn't given the choice.

When I first found myself in what I'll call the modern psychiatric system after many, many years just getting on with life, I found I didn't have the confidence to challenge what was happening and was bewildered by a lot of what was being said and done.

A year or so into my 'care', there was a care-planning meeting to which my parents were invited.  They gave the psychiatrist short shrift over a couple of things.  They weren't invited again.  It never occurred to me that I had the right to invite them if I wished.  They were strong, assertive people who'd had careers where they told others what to do.  With them watching my back, I'd probably have recovered pretty quickly and got on with life.

As I look back at it now, and as I think about what you've just written, I think there should have been some sort of booklet given to me, simply and clearly expressed, telling me my rights, and that there should have been a sheet/slip handed to me saying what I'd been referred for, what the next steps were and who was responsible for what.

Oh dear, gloom surfaces.  Will we or won't we succeed in fighting for our rights to have our disabilities and individual access needs catered for?  Maybe? I'm frightened all the time of the ongoing privatisation of the NHS and thinking maybe it'll be like much of the USA where it's about what your insurer wants that matters.  On the other hand, could a big push for disability equality in health services make it commercially advantageous for insurers to make some effort towards disability equality, even if just to look good and attract customers?  Lots of big companies make a show of supporting causes they don't actually care about.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

On the edge

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Re: NHS data sharing
« Reply #11 on: 10 Jul 2021 11:56AM »
As regards to mental health I had experience of trying to support another deaf person who had mental health issues and lacked support many years ago.  The individual had no confidence in the social worker allotted to them despite this social worker being a communicator as well, she felt intimidated and left out of initial GP consultations e.g. Ashamed she had a depression issue, and it had taken a long time to admit it.  Mostly her support was from peers, but couldn't cope outside that area.

She was eventually referred to a specialist in deaf Mental health, I was asked as a non family member to attend the interview with the patient, SS said no initially as did the specialists, but the client would not seek further help unless her wishes were respected.  I eventually agreed but assured the system I was there as 'peer support' and had no intentions of interfering with the SS or the specialist, who actually had no sign language experience at all (which I found was of concern given he was a 'specialist' to these deaf but as the SW did communication was there to bridge that divide, or, so I believed).  I was only allowed to go because I was put on the spot after the patient refused to go without my support, and sadly her family wouldn't go either.

I actually travelled to Bristol for the clinical diagnosis of the patient, sat outside the waiting room whilst the diagnosis took place after the Dr suddenly refused to allow me to go in, immediately causing issues with the patient, only my reassuring the patient I was just outside allowed the interview to take place.   I thought what an absolutely criminal way to assist a patient with MH issues and deafness. The diagnosis was over in minutes, the Dr came out with the SW and both asked me to enter the room with the patient who was in a pretty poor state. They said I was not to comment or offer input, just 'bear witness' and reassure.

I was frankly appalled at what I saw, clearly the patient was too stressed to follow either the interpreter or the Dr who did not sign at all.  I had to suggest a diagnosis would not be possible as it stood.  I said the patient is not following much of what you are asking she is too stressed, if you allow I can try along with the SW, who the patient was not cooperating with. Actually, and after a 30 minutes calming the patient down, this allowed the diagnosis to take place, I  asked permission to proceed at every point, from all 3 parties, it just seemed there was a need for someone unify the 3 parties there to get support in place. It wasn't viable as it stood.

It was fortunate I did as they were talking sectioning and removing the patient 300 miles away for 'assessment' they couldn't do there, she was unaware of this being talked about as the SW and Dr did their own thing discussing options and pretty much ignoring the patient, I said you aren't including the patient and trying to take decisions without explaining them to her, that cannot be right.  I suggested this stops really, it was unfair and the Dr wasn't really getting anywhere because the SW did all the 'talking' and clearly she wasn't all that up to date with the patient herself.  Armed with my support and unbiased explantation to the patient, we were able to prevent sectioning happening.  It was a catalogue of arrogance and ignorance by the system who hadn't attempted to inform or offer treatment and support, it was an excersize in removing deaf patients with MH to confined clinical support 100s of miles away, because locally no system existed, but to do that sectioning was being used to do it. Taking the time and trouble to support locally or even diagnose was just not happening.

God knows how many deaf in the past ended up sectioned, we should be horrified, but it was a 'norm' for deaf with MH.  Sadly deaf rights today hasn't really helped much because they suggest cultural knowledge is needed for diagnosing depression.  I don't agree, it assumes depression is because hearing ignore them mostly, so politics has crept in adding to issues.  The fact Drs cannot freely communicate to a deaf patient themselves means reliance is on social systems and others to enable, with all the accompanying rules and bias that can affect decision-making.  Quite obviously some deaf will deteriorate a lot faster and get a lot worse before the system kicks in and takes all their decisions for them.

Some light is on the horizon with Social workers stepping out of the picture and sign interpreters being neutral, translating and not offering input but allowing deaf patients to make own decisions, but a lot using family as stated before, still pose other problems.  There are still huge issues for the deaf to overcome, I think it will take another 25 years at least... assuming deaf politics is removed from the equation. 40% of deaf children have MH issues compared with 25% of hearing, so the misery continues :(

ditchdwellers

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Re: NHS data sharing
« Reply #12 on: 10 Jul 2021 12:38PM »
That's so sad to read, however I'm neither shocked nor surprised, which is shocking in itself. Thank you for taking the time to write this very thought provoking piece.

Sunny Clouds

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Re: NHS data sharing
« Reply #13 on: 10 Jul 2021 08:51PM »
I wish the sort experiences that D/deaf people have that OtE writes about were more widely known.  It's difficult, though, without then exposing individuals, as it were.  But OtE expresses it so articulately.

I'm mapping some of this on in my head to so many things that are wrong with much of the NHS's failure to adapt to individual needs.  The irony is that this doesn't help the staff either in terms of their stress levels and job satisfaction.  A small number may enjoy a sense of power denying people their needs and rights, but many more just find it wears them down.

Much of it now comes down to contracts, 'pathways' and box ticking by people desperate to keep their jobs.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: NHS data sharing
« Reply #14 on: 14 Jul 2021 06:28AM »
Ote even before you said that was a MHA assessment, I could tell that it was due to the set up. That is absolutely shocking treatment there. I can only hope that it would never happen now. I know AMHPs (approved mental health professionals, usually social workers, who arrange the assessment and if two doctors one of which must be section 12 trained in psychiatry agree that there is a mental illness, then decides whether it is in the patient's best interests to be detained under the MHA) who would always ensure a qualified professional interpreter was present at a MHA assessment if one was needed. 

I think our current mental health services are not fit for purpose currently. That whole experience must have been extremely traumatic and I can only hope that it didn't leave lasting psychological fears which would be understandable if it had. I hope they're doing okay now.