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NHS data sharing

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    MadamfluffMadamfluff Posts: 3,310
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    neo_wales wrote: »
    Listen to him or her for crying out loud and put your paranoia on hold just this once.

    On a plus note its a beautiful evening here in Playa Del Ingles and I'm off out for a G&T and a bite to eat :)

    Ignore him and do your own research and make up your own mind
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    MarellaKMarellaK Posts: 5,783
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    I agree that medical records, both paper and computerised, can sometimes be riddled with inaccuracies but at least the computerised versions are easier to decipher and usually follow a logical and coherent sequence.

    As a critical care nurse I have had to audit a lot of written notes following critical patient events and I usually it very difficult to ascertain exactly what has happened because doctors, in particular, are not very good with their written records - obviously time is a factor and they are always rushed so they don't record in much detail. They also sometimes get things wrong. For example, I may have attended the same critical emergency and, when reviewing the written notes afterwards, I can spot numerous inaccuracies. In ITU, the junior doctors' daily records usually just consist of copying the nurses' very detailed charts and records.

    On the subject of warfarin, I saw a patient on a ward last week who told me he had been taking warfarin at home, confirmed by his wife. I could find no reference to this in his written records (he had several volumes of notes so no doubt it was recorded somewhere). He had stopped taking warfarin prior to his surgery. Later on in the week he was admitted to ITU and, knowing his history, I was able to point out to the ITU consultant that he should by now be on an alternative to warfarin. Even the pharmacist had to spend some time finding the relevant record of warfarin.

    Computerised records are generally a lot more accurate because the doctors, when inputting the information, take a lot more time and care and are much more methodical. However, mistakes can still be made.

    Access to patients' past medical history is very important but I believe that it can sometimes paint quite a distorted view of a patient's quality of life and some doctors can base and limit their treatment on their judgement of that quality of life. I believe that is wrong and I have had to advocate and argue the case for patients, on many occasions, for higher levels of care in critical care units. Obviously, it is important to know if a patient has metastatic cancer or any other terminal conditions before deciding to aggressively treat them but I don't believe we should be judging quality of life for patients with chronic health problems - we should ask the patient (or NOK when appropriate) what he or she wants us to do for them and how far they would want us to go.

    Finally, I want to add that we would always take the patient's word (or his family's if the patient was unconscious) about the medical and drug history over the written or even computerised documentation unless we knew for certain that the records were accurate (eg if we had previously treated and remembered the patient).
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    WinterLilyWinterLily Posts: 6,305
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    Madamfluff wrote: »
    Not timely when you are undressing a patient and there is a bracelet around their wrist, how much faster is it to access a computer then to read a bracelet?

    And as for your answer thank you, as a nurse you admit you would have to err on the side of caution and by doing that you KNOW that computer records will have missing/incorrect information.

    Thank you for putting words in my mouth Madamfluff. Of course I would err on the side of caution if I saw the bracelet. However, this does not mean computer records have missing/incorrect information.....in the situation you mention it is safer to assume a patient is taking warfarin until it can be confirmed one way or the other.
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    MadamfluffMadamfluff Posts: 3,310
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    WinterLily wrote: »
    Thank you for putting words in my mouth Madamfluff. Of course I would err on the side of caution if I saw the bracelet. However, this does not mean computer records have missing/incorrect information.....in the situation you mention it is safer to assume a patient is taking warfarin until it can be confirmed one way or the other.

    How can you say THAT if there was a bracelet with information given by the patient and checked by the patient and that information was not on his computer records then of course it means there is incorrect and missing information on those records, if there wasn't the same information would HAVE to be on the computer. there is no other explanation in cases like that.

    Unless you are also of the mind like the other poster that the patient happened to just find the bracelet and decided to wear it for a lark.

    But the fact is that things like medical information jewellery aside, the NHS computer system is seen by a great deal of medical and IT staff (including quite a few GP practises ) as an expensive white elephant thats does more harm than good, with wrong and often damaging information entered into the system.

    And rightly or wrongly it is viewed with suspicion with members of the general public who are worried about confidentiality and what the Government want to use the information for.

    But as I said I am not saying to anybody believe me, I am certainly not saying blindly believe what the NHS are saying
    I am saying to people check out the information for yourself for and against and make up your own mind.

    As a nurse you should be aware that you are NOT responsible for my health. I am responsible for my health and all the decisions about my health care and that includes opting out of computer records.
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    WinterLilyWinterLily Posts: 6,305
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    Let's agree to disagree for it appears you are unlikely to discuss this matter in an open minded way....you have made your mind up and that is fine by me.

    Yes you are responsible for your own health and that is why I believe all should have access to their computer records. Each individual can then check if the information within them is accurate and take steps to amend them if they are not.
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    neo_walesneo_wales Posts: 13,625
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    Madamfluff wrote: »
    The problem with posts like mine is that they are the opinions of some one who has known about the NHS computer system since before 1990 has researched it, has read articles from IT providers, Drs and other medical professionals both for and against the scheme, has read official documents including the training manual used by my local hospital for my local data sharing scheme (scary reading by the way riddled with huge data protection issues)

    And No I don't expect people to listen to me I expect people to do the research and make up their own minds.

    I will not be on the scheme I have opted out and believe me as an intelligent free thinking woman well able to make up my own mind and take TOTAL responsibilities for my own actions I know its the right thing to do for me.

    To think that one day I might have to put my life in the hands of someone who would rather trust information from a computer system which at best is flawed, rather then something I am wearing because 'I might have found it' is bl@@dy scary especially is my Husbands comes with information to ring a 24 hour hot line that medical professionals know to use, I suspect one that had been 'stolen or lost' whould show up on their records

    You hark on to 1990 but thats ye olde days:rolleyes: I only retired a couple of years ago as a ward manager so I really do think I know the reality more than you, someone with a fixed agenda looking at your posts.
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    MadamfluffMadamfluff Posts: 3,310
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    WinterLily wrote: »
    Let's agree to disagree for it appears you are unlikely to discuss this matter in an open minded way....you have made your mind up and that is fine by me.

    Yes you are responsible for your own health and that is why I believe all should have access to their computer records. Each individual can then check if the information within them is accurate and take steps to amend them if they are not.

    But of course that is not that simple as the ICO states in their
    example

    Mr M asked his local hospital to send him a copy of his medical records. When he received them, he was surprised to read that they included an opinion by his doctor that he was suffering from a particular medical condition. Mr M disputed this because another doctor had diagnosed him differently.

    Mr M was concerned about the impact this diagnosis could have on his future healthcare, so he wrote to the hospital asking them to amend his records. The hospital said that they couldn’t amend them and so Mr M contacted us.

    We explained to Mr M that we could not force the hospital to delete or change this opinion, as it correctly recorded the view the doctor had held about Mr M’s condition at that time. However, we wrote to the hospital and asked them to record Mr M’s objections to this opinion on his medical file.

    Mr M was disappointed the opinion was not deleted but was pleased that we had been able to ensure the hospital recorded his objections to the opinion on his medical file.

    So No its not just as simple as getting my nice computer records and getting them changed
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    MadamfluffMadamfluff Posts: 3,310
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    neo_wales wrote: »
    You hark on to 1990 but thats ye olde days:rolleyes: I only retired a couple of years ago as a ward manager so I really do think I know the reality more than you, someone with a fixed agenda looking at your posts.

    You may be a Nurse but are you a Legal expert, an IT expert

    If the answer is no than I think you may find that as I have studied articles by people in those professions who are for and against the scheme and have made some very valid points I am aware of the 'reality'

    As for 1990 yes things have moved on the IT expert who wrote the article I read would have no idea how much the industry has changed,how technology has progressed how much data is collected, the type of information that can be collected and the way the Government and other interested agencies would LOVE to use the information if only they could get rid of that pesky DPA.

    As for an agenda, well you can call it that but if you have read my posts you KNOW that I have not said anywhere that people SHOULD opt out, I have said time and time again that people need to get ALL the facts and make up their own minds and not willynilly agree to have a computer record - just in case they may need medical help whilst they are away from home, especially as I have demonstrated that there are tried and tested methods of ensuring that medical staff can have the information to hand if need be.

    If there wasn't such opposition by people like me and by people who know more than me, the Labour Government would have got their way, an NHS spine seriously flawed with way too much information on and compulsory participation by every patient in the land.

    The fact that not once but twice they had to do a u turn on patients opting out and the fact that the current government have somewhat scaled down the extend of the system, does show that there was serious opposition by very eminent people.

    By all means someone who is worried about their health or takes certain medication should go on the computer if they want. But for the rest, read and make up your own minds
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    noise747noise747 Posts: 30,861
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    neo_wales wrote: »
    Listen to him or her for crying out loud and put your paranoia on hold just this once.

    The problem here is, yes i know that paper records is not 100% private, but only the people who these records are with can access them, not someone from where ever.

    Stick them on a computer with network access, no matter how secure it is, anyone can get them.

    Then you got the selling of our data. that is wrong, so wrong.

    So no, I am not going to agree with it, to much of our info is on databases where anyone can look at it.

    On a plus note its a beautiful evening here in Playa Del Ingles and I'm off out for a G&T and a bite to eat :)

    Nice here as well, lovely sunshine, going for a nice wlk in the countryside in a hour or so.

    Lovely hail yesterday, that was nice as well, got soaked letting a lorry out of the yard at work :)
    all fun and games.
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    neo_walesneo_wales Posts: 13,625
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    Madamfluff wrote: »
    You may be a Nurse but are you a Legal expert, an IT expert

    If the answer is no than I think you may find that as I have studied articles by people in those professions who are for and against the scheme and have made some very valid points I am aware of the 'reality'

    As for 1990 yes things have moved on the IT expert who wrote the article I read would have no idea how much the industry has changed,how technology has progressed how much data is collected, the type of information that can be collected and the way the Government and other interested agencies would LOVE to use the information if only they could get rid of that pesky DPA.

    As for an agenda, well you can call it that but if you have read my posts you KNOW that I have not said anywhere that people SHOULD opt out, I have said time and time again that people need to get ALL the facts and make up their own minds and not willynilly agree to have a computer record - just in case they may need medical help whilst they are away from home, especially as I have demonstrated that there are tried and tested methods of ensuring that medical staff can have the information to hand if need be.

    If there wasn't such opposition by people like me and by people who know more than me, the Labour Government would have got their way, an NHS spine seriously flawed with way too much information on and compulsory participation by every patient in the land.

    The fact that not once but twice they had to do a u turn on patients opting out and the fact that the current government have somewhat scaled down the extend of the system, does show that there was serious opposition by very eminent people.

    By all means someone who is worried about their health or takes certain medication should go on the computer if they want. But for the rest, read and make up your own minds

    So, your not a nurse, not in the medical profession at all? Your not an I.T. expert either but rather yet another armchair protester relying on articles you read...I rest my case.
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    neo_walesneo_wales Posts: 13,625
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    noise747 wrote: »
    The problem here is, yes i know that paper records is not 100% private, but only the people who these records are with can access them, not someone from where ever.

    Stick them on a computer with network access, no matter how secure it is, anyone can get them.

    Then you got the selling of our data. that is wrong, so wrong.

    So no, I am not going to agree with it, to much of our info is on databases where anyone can look at it.

    Nice here as well, lovely sunshine, going for a nice wlk in the countryside in a hour or so.

    Lovely hail yesterday, that was nice as well, got soaked letting a lorry out of the yard at work :)
    all fun and games.

    You need to re-think, your GP has been to School longer than you and perhaps knows a tad more about what he or she is on about.

    Lovely day here, around 22c with a nice breeze, I've just showered and am popping out for a bite to eat, grilled fish and salad with a side order of spuds and Mojo sauce :)
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    howard hhoward h Posts: 23,369
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    If dad's out and about and has an accident - I need someone to look at his record and note that mum's got Alzhiemer's and if dad can't return within a short time, I need to be contacted or someone's got to go home to help mum.

    Thought of everything to get over this, could dad have a wristband with some kind of NHS number on to tag to his records (would a+e look at it?)??
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    MadamfluffMadamfluff Posts: 3,310
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    neo_wales wrote: »
    So, your not a nurse, not in the medical profession at all? Your not an I.T. expert either but rather yet another armchair protester relying on articles you read...I rest my case.


    How do you know what I do????
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    EraserheadEraserhead Posts: 22,016
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    Paper records are terrible. The information you need about a patient is often difficult and time-consuming to find. Patients themselves are very unreliable historians and frequently don't even know what medication they're on ("something for blood pressure...begins with A...")

    Most of the time I can find what I'm looking for, sometimes after a lot of searching and phoning around GP surgeries etc. That's fine if those who oppose secure and rigorous data sharing don't mind me wasting half my day looking for stuff. I don't care - I'll get paid regardless but it isn't really an efficient use of my time.

    There's a great deal of information which could be shared between GP surgeries and hospital units (and there already is...all your x-rays and blood results can be viewed by both, for example) but it could be better.
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    allaortaallaorta Posts: 19,050
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    Eraserhead wrote: »
    Paper records are terrible. The information you need about a patient is often difficult and time-consuming to find. Patients themselves are very unreliable historians and frequently don't even know what medication they're on ("something for blood pressure...begins with A...")

    Most of the time I can find what I'm looking for, sometimes after a lot of searching and phoning around GP surgeries etc. That's fine if those who oppose secure and rigorous data sharing don't mind me wasting half my day looking for stuff. I don't care - I'll get paid regardless but it isn't really an efficient use of my time.

    There's a great deal of information which could be shared between GP surgeries and hospital units (and there already is...all your x-rays and blood results can be viewed by both, for example) but it could be better.

    Totally agree but if only there was a really integrated computer system. In France they have a super computer system using medical ID cards that works anywhere in the country. So far as I know, it isn't abused and has inbuilt safeguards. The cards are read every time you visit a hospital, doctor or clinic. Why we didn't buy their package rather than devising our own (and failing) I'll never know....pride perhaps or just politics, not to mention jobs for the IT industry.
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    noise747noise747 Posts: 30,861
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    neo_wales wrote: »
    So, your not a nurse, not in the medical profession at all? Your not an I.T. expert either but rather yet another armchair protester relying on articles you read...I rest my case.

    Sounds like she have done a lot of research into this to be honest.
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    noise747noise747 Posts: 30,861
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    neo_wales wrote: »
    You need to re-think, your GP has been to School longer than you and perhaps knows a tad more about what he or she is on about.

    What makes you think he been to school longer than me? He/she have done training to be a doctor, but that don't mean they know anything about databases or security.

    i was not asked to change my mind, i was just told it was a silly thing to do, but until they stop selling data and it is more secure than I will not be having my detail put onto that system

    I would have refused to register for the I.D card if that had gone ahead and that would have been illegal, so no way is a doctor going to force me to change my mind on this.

    they only wants me on it because it is easier for them
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    noise747noise747 Posts: 30,861
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    Eraserhead wrote: »
    Paper records are terrible. The information you need about a patient is often difficult and time-consuming to find. Patients themselves are very unreliable historians and frequently don't even know what medication they're on ("something for blood pressure...begins with A...")

    Most of the time I can find what I'm looking for, sometimes after a lot of searching and phoning around GP surgeries etc. That's fine if those who oppose secure and rigorous data sharing don't mind me wasting half my day looking for stuff. I don't care - I'll get paid regardless but it isn't really an efficient use of my time.

    There's a great deal of information which could be shared between GP surgeries and hospital units (and there already is...all your x-rays and blood results can be viewed by both, for example) but it could be better.

    Not saying paper records are a good thing, but no one in India or any one that is not where the records can get hold of them.

    Paper records can only be in one place at a time, so only one person can look at them at a time and not stored on some computer in Outer Mongolia
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    [Deleted User][Deleted User] Posts: 419
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    noise747 wrote: »
    Not saying paper records are a good thing, but no one in India or any one that is not where the records can get hold of them.

    No one in India should have access to the records anyway. They ain't meant to leave the EU.
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    LostFoolLostFool Posts: 90,662
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    pobice wrote: »
    No one in India should have access to the records anyway. They ain't meant to leave the EU.

    It happens: http://www.dailymail.co.uk/health/article-2201125/NHS-hospitals-sending-confidential-notes-India-typed-up.html
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    [Deleted User][Deleted User] Posts: 419
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    noise747 wrote: »
    they only wants me on it because it is easier for them

    Yes but mainly for your benefit. It speeds up the whole process and if done correctly can save money, which can be spent on treatments rather than admin. I've seen my local GP use my record more than they ever did in the past now its all digital and easy to find.

    Your local hospital and GP may have already gone digital internally anyway. If not some of it will be.
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    [Deleted User][Deleted User] Posts: 419
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    LostFool wrote: »

    Yes but they won't have the patients name etc. They'll just be typing up what the drs/consultants have dictated.
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    MadamfluffMadamfluff Posts: 3,310
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    noise747 wrote: »
    Sounds like she have done a lot of research into this to be honest.

    Thank you, yes I have
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    MadamfluffMadamfluff Posts: 3,310
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    pobice wrote: »
    Yes but mainly for your benefit. It speeds up the whole process and if done correctly can save money, which can be spent on treatments rather than admin. I've seen my local GP use my record more than they ever did in the past now its all digital and easy to find.

    Your local hospital and GP may have already gone digital internally anyway. If not some of it will be.

    GPs are now told they HAVE to use the computer system, thats why your GP is doing so, that does not mean he finds it easier to use, likes it or agrees with it

    And as for cost this is what labours NHS spine cost


    Originally expected to cost £2.3 billion (bn) over three years, in June 2006 the total cost was estimated by the National Audit Office to be £12.4bn over 10 years, and the NAO also noted that "...it was not demonstrated that the financial value of the benefits exceeds the cost of the Programme".[18] Similarly, the British Computer Society (2006) concluded that "...the central costs incurred by NHS are such that, so far, the value for money from services deployed is poor".[19] Officials involved in the programme have been quoted in the media estimating the final cost to be as high as £20bn, indicating a cost overrun of 440% to 770%.[20]

    How many people could be treated under the NHS for 20bn, how many new hospitals could have been built, how many new nurses and Drs could have been recruited and trained.
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    MadamfluffMadamfluff Posts: 3,310
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    howard h wrote: »
    If dad's out and about and has an accident - I need someone to look at his record and note that mum's got Alzhiemer's and if dad can't return within a short time, I need to be contacted or someone's got to go home to help mum.

    Thought of everything to get over this, could dad have a wristband with some kind of NHS number on to tag to his records (would a+e look at it?)??

    Try these people

    http://www.medicalert.org.uk/
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