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Thread: Natwest are trying to be seen to be doing the right thing

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    Re: Natwest are trying to be seen to be doing the right thing

    It isn't too late. As I have said, if you can prove that your personally identifiable information has gotten to people you do not want it to get to, despite opting out of data sharing, you can take legal action. There is a good reason laws were part of the digital records deal, to prevent personally identifiable data from getting out of the system. Part of the new proposal to use data for research automatically through the NHS has a stipulation that the data is not allowed to contain any personally identifiable information.

    Thinking about it without the use of digital information, it is easy to see how you could get letters from students or from your clinic of choice. You have a paper version of whatever is digitised; that paper version is accessible by people in an around the place it is stored; if they so choose they could easily use that information for medical research or to ask you to partake in medical research. From my point of view, regardless of whether or not your data is digital, the exact same thing you are describing can easily occur. Granted it is easier for it to occur if your records are digitised but the laws in place are designed to prevent that from occurring; I don't know any of my extended family having issues with personally identifiable information getting out. We all were willing to have our medical data shared to progress scientific research so we don't care about getting letters or leaflets pushed through our doors; what you are describing is not an issue for myself or my family. Despite that I still don't see how you can claim that your personally identifiable information has been shared with any other organisation than the NHS which you already agreed to share your data with by having a nationalised health system in the first place.

    In my mind, if you don't even want to share you health data with the NHS then you should be paying a private insurance company to keep track of your personal data for you. I trust them far less than the NHS; at least the NHS are accountable, sort of, well not really due to the UKs terrible political system. I still trust the NHS far more than I do a private company with my medical data, a private company has a direct monetary incentive to pass your information on with far less public scrutiny and less detailed laws.

    Having said that I am willing to let a credit card company, so far American Express seems to have the offer I am most interested in, have access to all my purchasing history which is a gold mine of marketing data. I find sharing my data more beneficial for myself and the culture as a whole. Win-win. It will be very difficult to convince me otherwise.

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    Re: Natwest are trying to be seen to be doing the right thing

    Quote Originally Posted by Noxvayl View Post
    Again, going back to assumptions. Can you prove your information has leaked to another body that you don't want it to? If you can that is a serious enough allegation to put your clinic in hot water. According to the laws surrounding the digitisation of your medical information, your information is not allowed to pass on to any other organisation unless you explicitly agree to it. It is illegal to do so and therefore if that has actually been done then you have grounds to sue your clinic.

    This is an extremely serious matter that is reflected in the serious laws that surround it. There are consequences for breaching those laws. I feel you have incorrectly assumed your information has been passed to another organisation when it has not. Unless you respond to a letter saying that you agree to the terms of the letter, nothing has been given to anyone with regards to your medical record. All that has happened is that you were asked if you would be so kind as to share your information; if you don't respond that means you were not so kind and your information has not been given to anyone; it is as simple as that.

    I do not understand why you think your information has been given to anyone just because you were sent a letter, or letters, asking for your permission to send your information. The only way your information could have been sent is if you responded to the letters saying that you agree.

    Please read through this website carefully. It clearly states that the information stored on Health & Social Care Information Centre (HSCIC) servers do not have any personally identifiable information attached to it and that there are laws in place to safeguard your personally identifiable information as well as laws in place to allow you to opt out of the data being shared. I take data security extremely seriously so I have made sure I have read that website. It doesn't specifically mention the laws that were created alongside the HSCIC database so I can't cite them and am not interested in reading legal nonsense just to find those laws for you. When it first happened I read the letter sent to me asking if I wanted to opt out of the new system and that letter clearly stated that your information will not be shared with anyone other than doctors if you opted out. In other words, if you wrote a letter (or phoned and had a conversation) asking your doctor to opt out of medical data sharing then you have opted out and your information is not allowed to be accessed by any other person but the GP that you go to see at a surgery/practice/clinic.

    I can't stress this enough: receiving a letter, no matter who it is from, asking you to share medical information does not, and should never, mean that your information has been shared. All it means is that someone would like to access your information, nothing else.
    Sorry Noxvayl, but that is SO full of misinterpretations I'm really not sure where to start. But I'll have a stab at it.

    Firstly, that care.data system ABSOLUTELY DOES transfer identifiable personal medical information, That is the whole point of it - to extract that data, monthly, from all GPs and transfer it to a body set up to warehouse it. That data WILL include, for example, your NHS number, postcode, gender and so on. It is NOT anonymised data. Once it gets to HSCIC, they then exercise control of what's done with that data, not your doctor and certainly not you. Once it's there, you have NO ability to get it deleted, though you can stop further uploads, and you can, up to a point, prevent further dissemination after you object.

    Anonymous and aggregate data has been going out for years, as has data necessary for running the NHS.

    But this "extraction" process takes it way, WAY further.

    Not only does the extraction process contain sufficient data to identify you, but a vast array of medical data about you, including prescriptions, referrals, treatments, outcomes, blood and other test results (*) .... and your ethnicity. It also includes whether you've been given certain types of advice by your doctor, like advice on exercise, on alcohol consumption, on smoking, and so on. And what I've said here is a very superficial list. It's VERY extensive coverage.

    (*) At this stage, it DOESN'T include "sensitive" data, like HIV/AIDS status, STDs, terminated pregnancies, UVF treatment, etc. But notice I said "at this stage". Those aren't covered in "release 1", so won't be extracted. But there is a commitment to consider those in release 2.

    As for this information being released to anyone else, it can't be released without your permission or other legal right. However, legislation covering patient record-keeping specifically introuduced such a right, known as Regulation 5, or s.251, that gives the authorities exactly that ability. It is NOT available for anyone to just wander up and ask, but there are a series of conditions in which "approved persons" WILL get access, and you will not even be told, never mind asked in advance.

    And those "approved" may include medical charities, university or other researchers and, yes, commercial bodies, like drug companies. Information can also be supplied, in certain circumstances, in "identifiable" form, not anonymised, or pseudonymised. You just don't know what form it may be supplied in, or to whom, or when, or for what purpose.

    Remember, unless YOU object (and very soon) and contact your GP, your GP practice MUST comply with this "extraction". Your GP cannot prevent it, even when they vehemently object to it. And a lot of doctors do. A lot will concede that such data can be used to do good, but that it ought to be opt-in, not a very poorly publicised and poorly communicated opt-out, and that disclosing such intensely personal medical data to anyone the HSCIC (not part of the NHS, even) feels like, without patient's explicit consent threatens to undermine trust in medical confidentiality itself.

    This whole business has certainly hugely undermined my trust in medical confidentiality. After all, you only have limited options to object to this data being plundered, and even that objection can be overridden if the circumstances are right. And at ANY time in the future, all it needs is a simple change to the law for that right to object to be removed, and ANYTHING you've discussed with your doctor, or bern treated for, or diagnosed with, from psychiatric consults to abortions, can be sucked out of what was private GP records into a central government bureaucracy. I didn't discuss various things with my GP, in confidence, only yo have it all stored on a government database, and personally, I WILL. be very careful, very selective indeed, in what I tell my doctor in the future. It's not that I don't trust my doctor's ethics. I don't trust either government or HSCIC.

    See, your medical data can't be given out with your explicit consent or you can sue .... unless legal cause exists, and the s.251 authority in that 2012 SI controlling patient records creates exactly such a legal cause, overriding the GPs duty under the Data Protection Act and compelling them to disclose your records, and giving HSCIC the ability to disclose records, including "identifiable" PCD (Personal Confidential Data ), if their disclosure protocol is satisfied.

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    Re: Natwest are trying to be seen to be doing the right thing

    Quote Originally Posted by Noxvayl View Post
    Despite that I still don't see how you can claim that your personally identifiable information has been shared with any other organisation than the NHS which you already agreed to share your data with by having a nationalised health system in the first place.
    i didn't claim it was shared with a body outside the NHS. The NHS is so massive it is quite capable of sharing data with many bodies inside the NHS it shouldn't have. And for the record I didn't agree with joining the NHS, I have no realistic option to opt out as i'm forced to pay for the shoddy service no matter what.

    Quote Originally Posted by Noxvayl View Post
    In my mind, if you don't even want to share you health data with the NHS then you should be paying a private insurance company to keep track of your personal data for you. I trust them far less than the NHS; at least the NHS are accountable, sort of, well not really due to the UKs terrible political system. I still trust the NHS far more than I do a private company with my medical data, a private company has a direct monetary incentive to pass your information on with far less public scrutiny and less detailed laws.
    The NHS is a huge organization that is spending £109.956 billion this year. and is also a huge employer - over half a million people, Many people spend their entire working life within it. And make their career progression within it. Data sharing within a group that big for something that has nothing to do with my medical care is wrong. If a commercial body did it they'd get slammed but we're meant to allow the NHS to do it because they're the fluffy good guys.

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    Re: Natwest are trying to be seen to be doing the right thing

    Quote Originally Posted by Saracen View Post
    Sorry Noxvayl, but that is SO full of misinterpretations I'm really not sure where to start. But I'll have a stab at it.

    Firstly, that care.data system ABSOLUTELY DOES transfer identifiable personal medical information, That is the whole point of it - to extract that data, monthly, from all GPs and transfer it to a body set up to warehouse it. That data WILL include, for example, your NHS number, postcode, gender and so on. It is NOT anonymised data. Once it gets to HSCIC, they then exercise control of what's done with that data, not your doctor and certainly not you. Once it's there, you have NO ability to get it deleted, though you can stop further uploads, and you can, up to a point, prevent further dissemination after you object.

    Anonymous and aggregate data has been going out for years, as has data necessary for running the NHS.

    But this "extraction" process takes it way, WAY further.

    Not only does the extraction process contain sufficient data to identify you, but a vast array of medical data about you, including prescriptions, referrals, treatments, outcomes, blood and other test results (*) .... and your ethnicity. It also includes whether you've been given certain types of advice by your doctor, like advice on exercise, on alcohol consumption, on smoking, and so on. And what I've said here is a very superficial list. It's VERY extensive coverage.

    (*) At this stage, it DOESN'T include "sensitive" data, like HIV/AIDS status, STDs, terminated pregnancies, UVF treatment, etc. But notice I said "at this stage". Those aren't covered in "release 1", so won't be extracted. But there is a commitment to consider those in release 2.

    As for this information being released to anyone else, it can't be released without your permission or other legal right. However, legislation covering patient record-keeping specifically introuduced such a right, known as Regulation 5, or s.251, that gives the authorities exactly that ability. It is NOT available for anyone to just wander up and ask, but there are a series of conditions in which "approved persons" WILL get access, and you will not even be told, never mind asked in advance.

    And those "approved" may include medical charities, university or other researchers and, yes, commercial bodies, like drug companies. Information can also be supplied, in certain circumstances, in "identifiable" form, not anonymised, or pseudonymised. You just don't know what form it may be supplied in, or to whom, or when, or for what purpose.

    ...

    See, your medical data can't be given out with your explicit consent or you can sue .... unless legal cause exists, and the s.251 authority in that 2012 SI controlling patient records creates exactly such a legal cause, overriding the GPs duty under the Data Protection Act and compelling them to disclose your records, and giving HSCIC the ability to disclose records, including "identifiable" PCD (Personal Confidential Data ), if their disclosure protocol is satisfied.
    From the website I linked to: "Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked, a new record will be created. This new record will not contain information that identifies you. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules."

    I understand that my data is being shared. According to what I have read the personally identifiable data is separate from the centralised data stored at HSCIC. They may be able to reverse engineer the process that gives them the anonymised data but the outside agencies getting that data shouldn't be able to. Unless I am missing something else that is.

    I suspect the misunderstanding we are having is not how we have analysed the data with regards to this system. It is more to do with how we perceive our data being shared and the fact that I grew up in a private healthcare system where if you couldn't pay you could literally die. I am sure you understand the legal side of things far more than I do, but what you have said has not changed my point of view. You haven't given me reason to doubt the protections in place. Why? Because the protections in place in this country are much, much, more stringent than I have experienced, or can imagine having, in a private healthcare system. My experience tells me that the protections in place here, with this system and you accepting your data being shared, is a lot better than you would get in South Africa for certain and more than likely more secure than anywhere else in the world (outside of the EU because I suspect there are some awesome countries in there that do it better).

    Is it misplaced faith in the system? That is debateable, but from my experience it is faith that has yet to be proven wrong. We will find out in due course if the new digitization of NHS data changes things but I suspect not. My bet is on it working out for the better, because if it doesn't there will be revolution. The fact that yourself, wasabi, myself and others take our personal data seriously means there should be enough vocal voices to gather a crowd when it is pointed out that the system is working against us. I most certainly will shout loud, and for as long as necessary, to make sure an identified problem is addressed with regards to medical data sharing.

    Quote Originally Posted by wasabi View Post
    i didn't claim it was shared with a body outside the NHS. The NHS is so massive it is quite capable of sharing data with many bodies inside the NHS it shouldn't have. And for the record I didn't agree with joining the NHS, I have no realistic option to opt out as i'm forced to pay for the shoddy service no matter what.



    The NHS is a huge organization that is spending £109.956 billion this year. and is also a huge employer - over half a million people, Many people spend their entire working life within it. And make their career progression within it. Data sharing within a group that big for something that has nothing to do with my medical care is wrong. If a commercial body did it they'd get slammed but we're meant to allow the NHS to do it because they're the fluffy good guys.
    Tell you what. If you go live in a country without nationalised health care and then expect that in that country the insurance company you have to subscribe to in order to get reasonable health care doesn't do the same data sharing that is discussed here then... well I have no idea, I can't imagine that being the case. I am honestly sick of people in the UK, generally not specifically you, comparing the NHS to private healthcare systems around the world. None of which come anywhere close to the levels of success or patient care quality that the NHS gets, except for Singapore which is a semi nationalised health care system with lots of regulation to ensure everyone gets adequate health care.

    If you think that private healthcare companies in other countries adhere to UK laws with regards to data protection you are deluding yourself. That is not the case in South Africa and with the lack of respect for privacy that America has I would be surprised if there isn't law that soon passes allowing data sharing globally so they can force data from anywhere in the world being shared with them.

    You are right that data sharing like this would be huge news... if it were to get out. The NHS are doing it openly, private companies are doing it behind your backs and profiting from it. You have the ability to voice concerns and make sure the protections in place are good enough or better than what they wanted to do in the first place. You have no such ability with private companies acting in secret. Unless a private company gets caught you will never know if they are sharing your data without your consent. They are likely to prevent people from contacting you because that is a sure way to get caught, much the same would be the case with the data sharing with the HSCIC. The difference with the HSCIC is that it is separate from the NHS, so what has been and will continue to happen within the NHS will not be stopped because you think it shouldn't do that. I completely disagree with you and would be very annoyed if a vocal minority prevented data being shared because the benefits, I feel, are being ignored or misunderstood with personal privacy taking precedence over your own health benefit from having the data shared.

    Data sharing within a group as big as the NHS gives them the ability to provide healthcare at a fraction of the cost that other countries can afford. Look at the American health care system as an example, Medicare alone costs the US government £357 billion; about half the healthcare costs in the USA go to one insurance offering, they have another one that costs £276 billion and then there are other healthcare systems costing various amounts extra. It is absolutely insane that a lower quality of service, it doesn't cover all the population, costs nearly 6 times as much as the NHS costs us. Nationalised health care is much more effective and achieves better outcomes, especially in the UK. Proper healthcare without discrimination is healthcare that can be accessed by anyone, no exceptions. Private systems have exceptions, which are variations on the same thing, cough up the money or suffer unnecessarily.

    At no point have I had the experience that you get refused health care based on your health history, your background or your yearly income. If you go to the NHS, regardless of how you came to be in the UK you get treated. That is something to be celebrated. Receiving letters, no matter how annoying, is ultimately something personal to you. I can't say whether you deserve to have diabetes or not, I certainly do not wish you to be denied access to health care based on it. However I feel that your annoyance with receiving letters asking you to be part of studies is clouding your judgement with regards to the NHS as a whole. There is no discrimination with the NHS that I am aware of, not in comparison to any other health care system in the world where your yearly income is the most likely discriminatory item thrown against you.

    I came to this country on an ancestral visa. I was cleared of medical issues upon arrival. After living here for a while I developed Tuberculosis (TB), a very serious illness that is contagious. The doctors weren't the same as what I had expected but despite that I got it diagnosed early enough to be treated without loss of lung function. Due to the nature of the disease it is likely that I brought the disease over with me from Africa. At the time there was a large outbreak of drug resistant TB that was killing people in Africa. Considering I was here on an ancestral visa, was not paying or had paid tax in this country and had a serious illness unlikely to have originated within this country (grounds for rejection of my visa) I was still treated as if I was a UK citizen and got the treatment I required without having to pay one pence. If I had not received that health care I could easily have died because my family had just spent their entire life savings on gettings us over to the UK so we had no way of paying for my medication whether it was bought over the counter in the UK or back in my home country. It would of been a case of borrowing significant money from the banks to try and pay for the medication that would keep me alive putting us in an even worse financial state than we were already in.

    I won't go so far as to say the NHS saved my life. I will go as far as to say the UK government didn't have to grant me access to that health care. They could of forced me to use private health care until I paid enough tax to allow me to get access to the NHS. That would of had a dramatic affect on my life; it might not of killed me because we probably would of been able to scrape together enough to pay for my medication but I wouldn't be in the position I am in right now, on my way to becoming a productive part of society. I might not have been in this country as a result, and the £20 000+ worth of tax our family currently contributes to the government would also have left. So thanks to the NHS, I am living a healthy and productive life. My family is as well. And as a direct result of the goodwill the country showed by offering the NHS for free to anyone who entered the country, they have no need to do that to non-EU citizens, the country is benefiting from it through our productive participation in the economy.

    The old saying that you don't know what you have lost until you loose it is true. My conversations in this country often end with me exchanging experiences from different aspects of my life to help explain just how good things are in this country. The NHS data sharing is no worse than what is happening already in South Africa, no worse than what is already happening in the USA and probably no worse than anywhere else in the world. The only difference is that the NHS is open about it and we are having this public discussion because we have access to the information; you wouldn't get that privilege in a private system, those decisions would be made for you without your input. The UK's propensity to put ridiculously overbearing restrictions into laws makes me believe the data sharing in this country is the safest that I know of. If there is an EU country that offers you a more acceptable healthcare system with data security you are happy with... then you should consider moving as soon as you can, before the UK removes itself from the EU out of spite because it doesn't recognise the wealth of knowledge shared within the EU among the diverse nations that are a part of it. I certainly won't stand for data sharing being stopped. I am happy for you to opt out, like you can, and happy to have that opt out option made better. That is to say that the current option you have is much better than you would have in a private system so making the current option better only elevates the NHS further above other countries offerings.

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    Re: Natwest are trying to be seen to be doing the right thing

    I just found something that I think is worth adding to this discussion as an appendix or annex, which ever you prefer to use

    https://www.youtube.com/watch?v=wyzi9GNZFMU

    and

    http://www.opensocietyfoundations.or...mission-values

    Set up by the same guy that made this series of lectures: http://www.opensocietyfoundations.or...d#introduction Who happens to be a very famous and successful hedge fund manager despite favouring philosophy over economics. *No relation to the Crash Course World History video though.*

    I've watched the first video of the lecture series which outlines George Soros's philosophy and am very intrigued by it. I am also intrigued with how it connects with history and how we have made that trade off of the benefits of civilisation as we know it for the lack of privacy we are reluctant to give up. It seems to me that our society is resisting governance more and more as we create more of an abundance for ourselves which is a good thing. I think resisting governance comes hand in hand with sharing of information though, you can't live in small community without everyone knowing who you are and what you do, if it is done people become suspicious of you and rightly so. Trust is automatic and losing can be life threatening in open societies.

    I thought I would post it here seeing as though we are so far down the tangential line of privacy already. I may make a new thread about it this evening to discuss it in more detail. You are welcome to do that before me, incase I forget.

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    Re: Natwest are trying to be seen to be doing the right thing

    Last weekend brought up a few things related to this thread, so I thought I would share them.

    On Sunday I was cleaning a knife used to cut some meat and it slipped; I managed to slice my flesh on the right index finger in the process. I cleaned it, reduced blood flow to help it clot and then dressed it before going to A&E. When I was seen by the nurse to see if I needed stitches I asked some questions about the data sharing considering most of what was being asked should be available to the nurse because the records are digital. It might surprise you but the nurse said that even if I give consent they can't access the data because it is kept and maintained by your local GP surgery. I cut myself on a Sunday so they weren't open and therefore the only way to get the data was to ask or wait until Monday. Should I have had an emergency and needed some meds that could of had serious side effects with the medication I was already taking there would of been no benefit to having the information digitised because they wouldn't of been able to get it. To me it is silly because there is obvious benefit to having the information easily available when I give consent, but I guess it does protect your information from being accessed without your permission. This brings up a point I made earlier in the discussion about carefully choosing your GP, this experience makes me feel even more strongly about that. It is very important to choose a GP that shares your views because they're likely the ones deserving of your distrust rather than the NHS or Government if you feel your information is being shared without your consent.

    The second thing I found out was that a credit card I thought I had cancelled years ago seems to still be available because I recently got a statement saying I have spent nothing and owe nothing to the bank in interest. This card is from Natwest so I will be going to see them about it. We'll see what they have to offer in comparison to what I would like to get.

    I hope my recent experience was helpful with regards to our data security and privacy discussion.

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    Re: Natwest are trying to be seen to be doing the right thing

    As per your hospital A&E experience, Nox, your basic GP data is, and will be "maintained' by your GP. They are, and under the Data Protection Act, will continue to be the "data controller". That isn't changing.

    What is changing, and note, not yet changed, is that legislation exempts your GP from their control over that data for the data sucking that will be done by HSCIC. The DPA doesn't provide absolute rights to control data, in that it doesn't override all other legal rights. And the changed legislation means the GP still controls most forms of data access, except that by HSCIC. Because the new legislation overrides the DPA, GPs do not have the legal ability to block data extraction by HSCIC.

    Only you do. And only I do for my data.

    But even after extraction by HSCIC, that won't mean hospitals can access your GP data. Other parts of the NHS will have to make the same applications, under HSCIC criteria, that university researchers or drug companies will, because HSCIC is not part of the NHS.

    It's also worth pointing out that police, like one Chief Constable recently argued in the Guardian, that they ought to have direct access, and that's direct access, out of hours, without court order. The logic seems to be to help deal with "vulnerable" people, but it included nedical data on domestic abuse victims even against the explicit and specific wishes of the victim.

    The BMA made the case recently for confidentiality.


    Quote Originally Posted by Dr Tony Calland, of the British Medical Association
    The essential principle that runs throughout the recording of medical information is that of confidentiality and trust. This principle has stood the test of time for millennia and still holds good today.

    ​"​At present the checks and balances in the current legal position are satisfactory and whilst the current law may cause some difficulty for the police the case has not been made to recommend a substantial change in the law ​.
    And that "essential principle" is my main point ....confidentiality and trust. For many people, if they can't trust that what they tell their doctor remains confidential, they simply won't tell their doctor. In the above case, uf a domestic abuse patient wanted the police involved, they could involve them. If those "vulnerable" people can't tell their doctor without police having access, it will cut off access to GPs for those vulnerable people. Trust and confidentiality in your GP will be a thing of the past.

    That's not part of the care.data system, but the principle holds true. If your medical data is "extracted" by HSCIC, and it will be under this scheme, then it's no longer controlled by a GP bound both by the DPA and medical ethics, but by a public body under the DofH, not bound by either. They can disseminate your very personal info, according to whatever nandate they have at the time, with no regard at all to your medical care.

    Right now, any NHS patient can opt out of that data transfer, can lock HSCIC out of accessing their own record to "extract" the data, but that option exists for a very brief future period. Last I heard, data extraction was due to start either end September or early October. After it's extracted, you have NO ability to change your mind and get it deleted. You can prevent further extractions, and prevent some releases by HSCIC, but you cannot prevent all releases, and cannot get already extracted data deleted.

    If people are happy fir their confidential, and personally identifiable, medical data to be used for whatever purposes some government body thinks best, fine, let it go ahead. Personally, I'm not. My discussions with my doctor are confidential, and if I can't trust that, I won't be having them. And right now, I tet the very distinct impression that a lot of patients have no idea of the implications of this scheme. What is clear is that a lot of GPs aren't happy about it. One survey of about 400 GPs showed 43% saying they, personally, would opt out, preventing their data getting uploaded, and 16% hadb't decided. Only 40% had decided to allow the extraction of their data.

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    Re: Natwest are trying to be seen to be doing the right thing

    I had simply thought that the current Doctors records being digital were open to anyone to view at any time if you're consent was given, which is not the case. I am actually in favour of a change in that direction because I grew up with it in my community and feel it is a hinderance to society as a whole to keep hiding information like that. With that not being the case, I am even less skeptical about medical data sharing. I am getting the feeling that my background has desensitized me to data sharing as a problem, or perhaps my philosophy of sharing is safer than hiding is overriding possible concerns.

    I must say that the option to opt out is really nice. Much like opting out of installing malware on my system with free programs it isn't the best way to do things, you annoy more people than you help and end up causing more trouble than it was worth. I'd rather have people voluntarily participate in the system than have people forced to out of ignorance of the situation being pushed forward. We seem to get good medica research done with volunteer subjects, I am currently participating in a long term mobile phone use study and I don't think it is significantly hindered by the opt in philosophy.

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    Re: Natwest are trying to be seen to be doing the right thing

    I'm not sure about densitisation, nox. You're in a better position to judge that than me. But from what you've said, you're used to a different set of assumptions. Here, getting hold of someone else's medical data has traditionally been next-to-impossible, outside of pretty narrow circumstances, and with a court order.

    Yet, this data grab by government is tantamount to them just saying it's their data, and unless you, the patient, kick off about it, we're taking it and giving/selling it to whomever we damn well please.

    When I have a confidential discussion with my doctor, I'm telling HIM (and it is a him, in my case) not a whole flaming government bureaucracy.

    If government was so convinced it's a good idea, make it opt in and then explain the benefits. But they didn't. They sent out a very unclear leaflet, explained some claimed benefits, didn't touch on ANY downsides and didn't even include an opt-out form. Of those family and friends I've spoken to about this, well over half didn't even know it was happening. And that's no way to get a genuine informed consent, even on an opt-out basis.

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    Re: Natwest are trying to be seen to be doing the right thing

    Didn't even know about HSCIC or the opting-out option till this thread. Have contacted my health centre and have an email confirming my removal.

    Just in case anyone finds it useful, there are opt-out letters in PDF format here.
    Last edited by wasabi; 22-08-2014 at 09:41 AM.

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    Re: Natwest are trying to be seen to be doing the right thing

    Agreed Saracen. Good ideas should stand on their own through the support of those that agree with it, not through force to conform with them without adequate information about all aspects of the idea being distributed. To me, what has happened with the data sharing is simply propaganda that we constantly berate other countries for yet stand by and accept or ignore it at home. I have managed to find a bunch of information on the subject through various means, but a large of the population can't even use the means I am comfortable using due to the "digital divide", to borrow a politicians meaningless phrase.

    The government handles things in such a weird way in this country, but I don't know any government that handles things differently to be honest- my home country has a government constantly changing its attitude to nearly everything. It seems to me that the UK government behaves as if everything it wants to do is good and we should just agree with it and move on; there doesn't seem to be any feedback that they listen to other than protests, at least from citizens... they are happy to listen to donors though. Through this attitude they stumble forward with some really stupid ideas and when something happens to work they claim it was all their doing when it is far more complicated than one source of change being the "reason" for good occurring. Sometimes they stumble forward with good ideas and make a mess of it because they have no idea how to execute their vision properly.

    It is a sad state of affairs.

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