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NHS Digital data
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"For information - From 1st July the Government will have the right to sell private medical records to third parties unless you explicitly opt-out. There is a cut-off date - 23rd June - to opt-out. Further details and how to opt-out can be found at digital.nhs.uk " Get your facts correct!!! | |||
"We are not going to sell your data NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this. Charges only cover the cost of running the service and means that those organisations who need access to the data bear the costs of this, rather than NHS Digital. We do not make profits from the service. The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account. We do not allow data to be used solely for commercial purposes. NHS Digital will not approve requests for data to be used for: insurance or marketing purposes promoting or selling products or services market research advertising " how is the use of the data by third parties that is provided by the NHS policed going forward exactly? | |||
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"For information - From 1st July the Government will have the right to sell private medical records to third parties unless you explicitly opt-out. There is a cut-off date - 23rd June - to opt-out. Further details and how to opt-out can be found at digital.nhs.uk " load of rubbish | |||
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"We are not going to sell your data NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this. Charges only cover the cost of running the service and means that those organisations who need access to the data bear the costs of this, rather than NHS Digital. We do not make profits from the service. The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account. We do not allow data to be used solely for commercial purposes. NHS Digital will not approve requests for data to be used for: insurance or marketing purposes promoting or selling products or services market research advertising " “Solely”? Who draws that line? What if the purpose is 99% commercial and 1% research... 
When Dr Xand is on the one show telling everyone even he is trying to opt out I start to have questions! My health data is potential gold dust to insurance companies, advertisers and financial service companies and don’t think for a second it’s anonymised anywhere near well enough. | |||
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"General Practice Data for Planning and Research (GPDPR) - nhs.digital.uk “ This data will be shared from 1 July 2021. Data may be shared from the GP medical records about: any living patient registered at a GP practice in England when the collection started - this includes children and adults any patient who died after 1 July 2021, and was previously registered at a GP practice in England when the data collection started” Just to be clear this posting isn’t about projecting a positive or negative about this process - if you are already aware of the process then it will not be new, however for those that may not be aware of what is going to happen, then it is informative in pointing you to nhs.digital.uk where details can be found. " The data that is referred to is "annonymised" data. To comply with GDPR if must be impossible for any person to be identified from the data. The third parties who will pay for access to data will make specific data requests... such as "how many men aged between 18 and 30 in London have a requested information about penis enlargement treatments" | |||
"General Practice Data for Planning and Research (GPDPR) - nhs.digital.uk “ This data will be shared from 1 July 2021. Data may be shared from the GP medical records about: any living patient registered at a GP practice in England when the collection started - this includes children and adults any patient who died after 1 July 2021, and was previously registered at a GP practice in England when the data collection started” Just to be clear this posting isn’t about projecting a positive or negative about this process - if you are already aware of the process then it will not be new, however for those that may not be aware of what is going to happen, then it is informative in pointing you to nhs.digital.uk where details can be found. The data that is referred to is "annonymised" data. To comply with GDPR if must be impossible for any person to be identified from the data. The third parties who will pay for access to data will make specific data requests... such as "how many men aged between 18 and 30 in London have a requested information about penis enlargement treatments"" I didn't have to request, had some lovely emails already about that. | |||
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"I am a bit confused as to how this is Covid related though." Hedged my bets and figured the forum related to health matters was probably the best fit.  | |||
"We are not going to sell your data NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this. Charges only cover the cost of running the service and means that those organisations who need access to the data bear the costs of this, rather than NHS Digital. We do not make profits from the service. The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account. We do not allow data to be used solely for commercial purposes. NHS Digital will not approve requests for data to be used for: insurance or marketing purposes promoting or selling products or services market research advertising “Solely”? Who draws that line? What if the purpose is 99% commercial and 1% research...
When Dr Xand is on the one show telling everyone even he is trying to opt out I start to have questions! My health data is potential gold dust to insurance companies, advertisers and financial service companies and don’t think for a second it’s anonymised anywhere near well enough."Any data is also totally anonymous. All they get is figures relating to certain conditions. They do not get access to your name, address or any other identifying information. | |||
"I am a bit confused as to how this is Covid related though." It's not, it just someone trying to cause worry without true facts and the virus site is full of people who will believe it. | |||
"For information - From 1st July the Government will have the right to sell private medical records to third parties unless you explicitly opt-out. There is a cut-off date - 23rd June - to opt-out. Further details and how to opt-out can be found at digital.nhs.uk " More bull shit, you call us sheeple when I think it's you lot that need to wake up and do your bloody research before posting misinformation that is being spread by people that really want your money and information for nefarious purposes. Wake up the woke I say  | |||
"I am a bit confused as to how this is Covid related though. It's not, it just someone trying to cause worry without true facts and the virus site is full of people who will believe it. " I believe I made it perfectly clear in all the posts that full details and information about this process is available from nhs.digital.uk - the official site for the NHS and NHS Digital. | |||
"I am a bit confused as to how this is Covid related though. It's not, it just someone trying to cause worry without true facts and the virus site is full of people who will believe it. I believe I made it perfectly clear in all the posts that full details and information about this process is available from nhs.digital.uk - the official site for the NHS and NHS Digital. " You did make it clear. Waiting for it to show up on Facebook.  | |||
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"We are not going to sell your data NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this. Charges only cover the cost of running the service and means that those organisations who need access to the data bear the costs of this, rather than NHS Digital. We do not make profits from the service. The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account. We do not allow data to be used solely for commercial purposes. NHS Digital will not approve requests for data to be used for: insurance or marketing purposes promoting or selling products or services market research advertising “Solely”? Who draws that line? What if the purpose is 99% commercial and 1% research...
When Dr Xand is on the one show telling everyone even he is trying to opt out I start to have questions! My health data is potential gold dust to insurance companies, advertisers and financial service companies and don’t think for a second it’s anonymised anywhere near well enough."
Data is bought and sold, aggregated and processed, such that an initial facade of anonymity is readily lost, where anyone wants to do this. | |||
"Do what you want with mine, I'm on a Google device for heaven's sake. Mines already been sold three hundred times." Typical sheeple reaction | |||
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"Why hasn't this been on the TV then? " I have read it in the media | |||
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"We are not going to sell your data NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them. This is because we are not funded centrally to do this. Charges only cover the cost of running the service and means that those organisations who need access to the data bear the costs of this, rather than NHS Digital. We do not make profits from the service. The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account. We do not allow data to be used solely for commercial purposes. NHS Digital will not approve requests for data to be used for: insurance or marketing purposes promoting or selling products or services market research advertising “Solely”? Who draws that line? What if the purpose is 99% commercial and 1% research...
When Dr Xand is on the one show telling everyone even he is trying to opt out I start to have questions! My health data is potential gold dust to insurance companies, advertisers and financial service companies and don’t think for a second it’s anonymised anywhere near well enough.
Any data is also totally anonymous. All they get is figures relating to certain conditions. They do not get access to your name, address or any other identifying information. "No personal data is ever totally anonymous. It’s just a case of piecing data together from various sources. Your medical history is as unique to you as your fingerprints... overlay enough partial finger prints on top of each other and you can put together a complete one. | |||
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"Why hasn't this been on the TV then? " It was on the one show bbc1 | |||
"For information - From 1st July the Government will have the right to sell private medical records to third parties unless you explicitly opt-out. There is a cut-off date - 23rd June - to opt-out. Further details and how to opt-out can be found at digital.nhs.uk load of rubbish " Why? | |||
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"Surely the Sydney University legal warning will be enough to stop anyone using my data if I add it to the bottom of my NHS record. I suggest everyone does the same "I'm in. | |||
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"General Practice Data for Planning and Research (GPDPR) - nhs.digital.uk “ This data will be shared from 1 July 2021. Data may be shared from the GP medical records about: any living patient registered at a GP practice in England when the collection started - this includes children and adults any patient who died after 1 July 2021, and was previously registered at a GP practice in England when the data collection started” Just to be clear this posting isn’t about projecting a positive or negative about this process - if you are already aware of the process then it will not be new, however for those that may not be aware of what is going to happen, then it is informative in pointing you to nhs.digital.uk where details can be found. The data that is referred to is "annonymised" data. To comply with GDPR if must be impossible for any person to be identified from the data. The third parties who will pay for access to data will make specific data requests... such as "how many men aged between 18 and 30 in London have a requested information about penis enlargement treatments"" Cal, pretty sure I saw on another thread that you work in IT? Well you would then know something about big data and aggregated data sets right? The issue here is the govt were trying to do this very quietly and making it an Opt Out rather than an Opt In. That is not acceptable. | |||
"Find it hilarious how some people on here are so selective with their “trust the experts” I can’t post the links but one (pro vaccine) expert is Dr Rachel Clarke. Here’s what she said in Twitter: Rachel Clarke @doctor_oxford · Jun 6 Please watch this brief @allthecitizens video in which I explain exactly why I’m so concerned about the government’s #NHSDataGrab. Your health data is such a precious commodity. It should not be sold commercially without your consent."
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"Do what you want with mine, I'm on a Google device for heaven's sake. Mines already been sold three hundred times." The majority of our date has been shared as we were talk talk customers even our names that we use day to day (shortned versions of our full names) | |||
"Do what you want with mine, I'm on a Google device for heaven's sake. Mines already been sold three hundred times. The majority of our date has been shared as we were talk talk customers even our names that we use day to day (shortned versions of our full names)" That was when the wonderful Dido Harding was in charge of Talk Talk. Wonder what happened to her? | |||
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"General Practice Data for Planning and Research (GPDPR) - nhs.digital.uk “ This data will be shared from 1 July 2021. Data may be shared from the GP medical records about: any living patient registered at a GP practice in England when the collection started - this includes children and adults any patient who died after 1 July 2021, and was previously registered at a GP practice in England when the data collection started” Just to be clear this posting isn’t about projecting a positive or negative about this process - if you are already aware of the process then it will not be new, however for those that may not be aware of what is going to happen, then it is informative in pointing you to nhs.digital.uk where details can be found. The data that is referred to is "annonymised" data. To comply with GDPR if must be impossible for any person to be identified from the data. The third parties who will pay for access to data will make specific data requests... such as "how many men aged between 18 and 30 in London have a requested information about penis enlargement treatments" ----- Cal, pretty sure I saw on another thread that you work in IT? Well you would then know something about big data and aggregated data sets right? The issue here is the govt were trying to do this very quietly and making it an Opt Out rather than an Opt In. That is not acceptable." You are correct, my knowledge comes from a professional point of view... this is why I'm in the tiniest bit concerned. Cal | |||
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"I have previously had a spate of you’ve been in an accident phone calls after visiting the doctors so I’m pretty sure they already do sell your records " Sorry to hear about the accident, hope all is well | |||
"Type 1 Opt-out (opting out of NHS Digital collecting your data) We will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice. More information about Type 1 Opt-outs is in our GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice. This collection will start on 1 July 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with your GP practice by 23 June 2021. Full details can be found at digital.nhs.uk" The NHS already has all our data at their fingertips. Stop being so frigging dramatic. | |||
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"Type 1 Opt-out (opting out of NHS Digital collecting your data) We will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice. More information about Type 1 Opt-outs is in our GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice. This collection will start on 1 July 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with your GP practice by 23 June 2021. Full details can be found at digital.nhs.uk The NHS already has all our data at their fingertips. Stop being so frigging dramatic." Yes the NHS do have your medical records and data. You can find out about what they are going to be able to do with that data at digital.nhs.uk No dramatics, just the option for people to find out more about who has access to your medical data and how it may be used in the future. | |||
"The NHS already has all our data at their fingertips. Stop being so frigging dramatic." you see all mouth I bet you havent told your gp that your a swinger and play on a swinger site
That you sleep with different ladies or men and name each and everyone of them. | |||
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"The NHS already has all our data at their fingertips. Stop being so frigging dramatic. you see all mouth I bet you havent told your gp that your a swinger and play on a swinger site
That you sleep with different ladies or men and name each and everyone of them. "Not sure what your point is, if you have one. | |||
"The extra info they do collect not forgetting you dont see your exes comments Personal status Divorced couple sharing house Marriage Separation Divorce Marital problems Marital reconciliation Single parent Unwanted pregnancy Illegitimate pregnancy Imprisonment record Battered wife – history Battered husband – history Violent spouse Engaged Broken engagement Broken with partner Legal problem Criminal record Boyfriend relationship problem Girlfriend relationship problem In prison On probation On remand Extra-marital problems On conditional probation Subject to Anti Social Behaviour Order Imprisonment of family member History of abuse Prison medical examination Complaints about care Place of occurrence of accident or poisoning, prison Homicide and injury purposely inflicted by other persons [X]Assault [V]Conviction in civil and criminal proceedings without imprisonment [V]Problems related to release from prison [V]Marital problems [V]Legal problems [V]Imprisonment and other incarceration" It is completely irrelevant though because the things they don't share include: Name Date of Birth Address Anything that could actually allow a person to be identified. Cal | |||
" It is completely irrelevant though because the things they don't share include: Name Date of Birth Address Anything that could actually allow a person to be identified. Cal" your argument is invalid What NHS Digital doesn’t mention is that it holds people’s names and addresses already, in its ‘Personal Demographics Service’. The information collected with every dated medical event about you will allow NHS Digital to individually identify you, or it couldn’t link your records. ‘Not collecting names and addresses’ is acomplete straw man; previous schemes such as care.data didn’t either - they never needed to. | |||
"The extra info they do collect not forgetting you dont see your exes comments Personal status Divorced couple sharing house Marriage Separation Divorce Marital problems Marital reconciliation Single parent Unwanted pregnancy Illegitimate pregnancy Imprisonment record Battered wife – history Battered husband – history Violent spouse Engaged Broken engagement Broken with partner Legal problem Criminal record Boyfriend relationship problem Girlfriend relationship problem In prison On probation On remand Extra-marital problems On conditional probation Subject to Anti Social Behaviour Order Imprisonment of family member History of abuse Prison medical examination Complaints about care Place of occurrence of accident or poisoning, prison Homicide and injury purposely inflicted by other persons [X]Assault [V]Conviction in civil and criminal proceedings without imprisonment [V]Problems related to release from prison [V]Marital problems [V]Legal problems [V]Imprisonment and other incarceration It is completely irrelevant though because the things they don't share include: Name Date of Birth Address Anything that could actually allow a person to be identified. Cal" So why are reputable medical experts like Dr Rachel Clarke against it? | |||
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" It is completely irrelevant though because the things they don't share include: Name Date of Birth Address Anything that could actually allow a person to be identified. Cal your argument is invalid What NHS Digital doesn’t mention is that it holds people’s names and addresses already, in its ‘Personal Demographics Service’. The information collected with every dated medical event about you will allow NHS Digital to individually identify you, or it couldn’t link your records. ‘Not collecting names and addresses’ is acomplete straw man; previous schemes such as care.data didn’t either - they never needed to." I've read it doesn't collect personal data | |||
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"The extra info they do collect not forgetting you dont see your exes comments Personal status Divorced couple sharing house Marriage Separation Divorce Marital problems Marital reconciliation Single parent Unwanted pregnancy Illegitimate pregnancy Imprisonment record Battered wife – history Battered husband – history Violent spouse Engaged Broken engagement Broken with partner Legal problem Criminal record Boyfriend relationship problem Girlfriend relationship problem In prison On probation On remand Extra-marital problems On conditional probation Subject to Anti Social Behaviour Order Imprisonment of family member History of abuse Prison medical examination Complaints about care Place of occurrence of accident or poisoning, prison Homicide and injury purposely inflicted by other persons [X]Assault [V]Conviction in civil and criminal proceedings without imprisonment [V]Problems related to release from prison [V]Marital problems [V]Legal problems [V]Imprisonment and other incarceration It is completely irrelevant though because the things they don't share include: Name Date of Birth Address Anything that could actually allow a person to be identified. Cal So why are reputable medical experts like Dr Rachel Clarke against it?" Many people don't understand how this data stuff works. | |||
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"A principle of the GDPR legalisation is that you should opt IN to how your data is used through an informed choice. This principle seems to have been completely ignored by those who seek to benefit from it's distribution for reward. " It is only deemed "personal" Data IF a person can be identified by it. "Personal data is information that relates to an identified or identifiable individual" is how it is defined by the ICO (the people in charge of data protection in the UK) Cal | |||
"A principle of the GDPR legalisation is that you should opt IN to how your data is used through an informed choice. This principle seems to have been completely ignored by those who seek to benefit from it's distribution for reward. It is only deemed "personal" Data IF a person can be identified by it. "Personal data is information that relates to an identified or identifiable individual" is how it is defined by the ICO (the people in charge of data protection in the UK) Cal" Ico is just as 2 faced like the business as long as it suits them. its starts up when enough people complain about stuff. not forgetting its there supposidly advising others on whats best to do to protect peoples info. so where is it like many times before saying to the gov you cant do this its supposed to be opt in by voluntary choice. not ingnoring the fact as it is doing at the moment. as goes for the fines companys get its pathetic when companies lose peoples important data. | |||
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"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous. I opted out of last week because I fully disagree with how and what's being done. Patients NHS data is worth tens of billions a year, but this patient data must only be shared with fully informed consent. " Its completely different, the data is just that bulk numbers of info, it is illegal to give out any info without personal consent. If you have any form of store card etc you will give away far more info that is personal to you and is sold on all the time. My son works for a company that uses algorithms to target ads etc, everytime we fill in a delivery address for anything you buy that info is sold on. There is nothing in the nhs data that can identify you. | |||
"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous. I opted out of last week because I fully disagree with how and what's being done. Patients NHS data is worth tens of billions a year, but this patient data must only be shared with fully informed consent. Its completely different, the data is just that bulk numbers of info, it is illegal to give out any info without personal consent. If you have any form of store card etc you will give away far more info that is personal to you and is sold on all the time. My son works for a company that uses algorithms to target ads etc, everytime we fill in a delivery address for anything you buy that info is sold on. There is nothing in the nhs data that can identify you." | |||
"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous." Good news, there seems to be some common sense, that a pause for thought on this is required. . | |||
"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous. I opted out of last week because I fully disagree with how and what's being done. Patients NHS data is worth tens of billions a year, but this patient data must only be shared with fully informed consent. Its completely different, the data is just that bulk numbers of info, it is illegal to give out any info without personal consent. If you have any form of store card etc you will give away far more info that is personal to you and is sold on all the time. My son works for a company that uses algorithms to target ads etc, everytime we fill in a delivery address for anything you buy that info is sold on. There is nothing in the nhs data that can identify you." You have been assumed as having given your consent by not opting out by the deadline. It's pseudo-anonymised data, carrying the many issues that others, including campaigning groups and professionals have raised. | |||
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"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous. I opted out of last week because I fully disagree with how and what's being done. Patients NHS data is worth tens of billions a year, but this patient data must only be shared with fully informed consent. Its completely different, the data is just that bulk numbers of info, it is illegal to give out any info without personal consent. If you have any form of store card etc you will give away far more info that is personal to you and is sold on all the time. My son works for a company that uses algorithms to target ads etc, everytime we fill in a delivery address for anything you buy that info is sold on. There is nothing in the nhs data that can identify you." Good point. We give information out all the time in different ways. Who ever reads all the T&C on apps, orders, websites etc....... | |||
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"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous. I opted out of last week because I fully disagree with how and what's being done. Patients NHS data is worth tens of billions a year, but this patient data must only be shared with fully informed consent. Its completely different, the data is just that bulk numbers of info, it is illegal to give out any info without personal consent. If you have any form of store card etc you will give away far more info that is personal to you and is sold on all the time. My son works for a company that uses algorithms to target ads etc, everytime we fill in a delivery address for anything you buy that info is sold on. There is nothing in the nhs data that can identify you. Good point. We give information out all the time in different ways. Who ever reads all the T&C on apps, orders, websites etc......." perhaps people should be more inquisitive as to how others use the data that they carelessly hand over about themselves. it's clear most people are too trusting when it comes to using the internet or mobile apps and that could well cause problems for them as the rules and regs are continuously erroded by the government. | |||
"with an average of 15 addresses in one post-code it doesn't take much for an algorithm to cross reference the likes of census, electoral roll, dvla, land registry, insurance etc data sets to pinpoint which individuals data is being processed in any given psuedo-anonymous data set. " The data wont include post codes apart from possibly the first section which 8s a huge area. If your that worried report it the regulator, I'd if breaches the law which if it gives ANY info that gives your I'd away then they will stop it. | |||
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"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous. I opted out of last week because I fully disagree with how and what's being done. Patients NHS data is worth tens of billions a year, but this patient data must only be shared with fully informed consent. Its completely different, the data is just that bulk numbers of info, it is illegal to give out any info without personal consent. If you have any form of store card etc you will give away far more info that is personal to you and is sold on all the time. My son works for a company that uses algorithms to target ads etc, everytime we fill in a delivery address for anything you buy that info is sold on. There is nothing in the nhs data that can identify you. Good point. We give information out all the time in different ways. Who ever reads all the T&C on apps, orders, websites etc....... perhaps people should be more inquisitive as to how others use the data that they carelessly hand over about themselves. it's clear most people are too trusting when it comes to using the internet or mobile apps and that could well cause problems for them as the rules and regs are continuously erroded by the government." Exactly this. GDPR (EU legislation) is currently part of UK legislation (it was pretty much ported across). But for how long? The issue here though is that in future it may be possible to aggregate data sets to build a fuller picture. Yes google et al know your browsing history (what interests you) and know your location and purchase history but then imagine combining that with your medical history! People saying can’t happen now are missing that it could still happen in future. Legislation changes! | |||
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"The NHS already has all our data at their fingertips. Stop being so frigging dramatic. you see all mouth I bet you havent told your gp that your a swinger and play on a swinger site
That you sleep with different ladies or men and name each and everyone of them.
Not sure what your point is, if you have one."My local NHS sexual health clinic knows I'm a swinger when I get a check up they ask how many partners I've had in the last 6mths (I keep a written list of names just in case). If my GP needed to know I would be happy to tell them - it's not illegal or something to be ashamed of | |||
"I have been involved with many-a GDPR project (work with data, DBs, etc) & my view is fairly parallel to what Oddman posted above. Never assume the best when it comes to how well anonymized or safe your data is. No system is fool-proof. Whilst there will be a fair degree of obfuscation etc, at the end of the day they are doing this to be able to sell your data. Currently it sits in one system (probably a bit more secure than others). Once it is sold off, your data is now out in the open and there is no guarantee how secure it is. Although I work with a lot of data, I am a bit laissez-faire with it on various websites. So much of mine will already be out there. However this is medical information, so definitely more sensitive than some other data. The worrying thing is that the once the 'collection' date hits, I think, if you do not opt-out, they have ALL your information on you up to that date (decades for most people). -- "If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out." -- If you choose to opt-out at a later date, they can still share all the data up to the date you opted out. You're only opt-ing out of any new data being shared... This is the part I really do not like. May be incorrect, but it certainly reads that way. I've also noticed they have updated the date they are collecting the data from on the website, yesterday. Now it says "This collection will start on 1 September 2021.", whereas it was 23rd June when I read yesterday. Not sure of the reason yet, but I wouldn't be surprised it is due to the back-lash on the lack of transparency on this, and time for people to process it. (I personally received no email, no letter etc - only read about it.) As they have actually made it very convoluted to know exactly how to do both opt-outs. It is another thing I really dislike... since this dodgy preference wording and making it difficult to opt-out is strictly against standard GDPR guidelines. This website gives some very easy-to-follow instructions on the exact steps to fully opt-out, should you chose to: https://medconfidential.org/how-to-opt-out/ I have myself, but up to you for your own data." This is a good post. A crucial point missed by those who cheerfully cry ‘it’s only anonymised data!’ is that data is only anonymous in isolation. Once data sets are combined and compared with other available data sets interested parties can buy access to, of which there are many, it’s fairly trivial to remove that anonymity and identify an individual precisely. The only sensible thing to do here is to opt out. | |||
"I have been involved with many-a GDPR project (work with data, DBs, etc) & my view is fairly parallel to what Oddman posted above. Never assume the best when it comes to how well anonymized or safe your data is. No system is fool-proof. Whilst there will be a fair degree of obfuscation etc, at the end of the day they are doing this to be able to sell your data. Currently it sits in one system (probably a bit more secure than others). Once it is sold off, your data is now out in the open and there is no guarantee how secure it is. Although I work with a lot of data, I am a bit laissez-faire with it on various websites. So much of mine will already be out there. However this is medical information, so definitely more sensitive than some other data. The worrying thing is that the once the 'collection' date hits, I think, if you do not opt-out, they have ALL your information on you up to that date (decades for most people). -- "If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out." -- If you choose to opt-out at a later date, they can still share all the data up to the date you opted out. You're only opt-ing out of any new data being shared... This is the part I really do not like. May be incorrect, but it certainly reads that way. I've also noticed they have updated the date they are collecting the data from on the website, yesterday. Now it says "This collection will start on 1 September 2021.", whereas it was 23rd June when I read yesterday. Not sure of the reason yet, but I wouldn't be surprised it is due to the back-lash on the lack of transparency on this, and time for people to process it. (I personally received no email, no letter etc - only read about it.) As they have actually made it very convoluted to know exactly how to do both opt-outs. It is another thing I really dislike... since this dodgy preference wording and making it difficult to opt-out is strictly against standard GDPR guidelines. This website gives some very easy-to-follow instructions on the exact steps to fully opt-out, should you chose to: https://medconfidential.org/how-to-opt-out/ I have myself, but up to you for your own data. This is a good post. A crucial point missed by those who cheerfully cry ‘it’s only anonymised data!’ is that data is only anonymous in isolation. Once data sets are combined and compared with other available data sets interested parties can buy access to, of which there are many, it’s fairly trivial to remove that anonymity and identify an individual precisely. The only sensible thing to do here is to opt out." So, how does someone get from having the knowledge that there are 200 men aged between 25 and 35 in Scunthorpe who have Herpes, to being able to know the name of any one of those men? | |||
"I have been involved with many-a GDPR project (work with data, DBs, etc) & my view is fairly parallel to what Oddman posted above. Never assume the best when it comes to how well anonymized or safe your data is. No system is fool-proof. Whilst there will be a fair degree of obfuscation etc, at the end of the day they are doing this to be able to sell your data. Currently it sits in one system (probably a bit more secure than others). Once it is sold off, your data is now out in the open and there is no guarantee how secure it is. Although I work with a lot of data, I am a bit laissez-faire with it on various websites. So much of mine will already be out there. However this is medical information, so definitely more sensitive than some other data. The worrying thing is that the once the 'collection' date hits, I think, if you do not opt-out, they have ALL your information on you up to that date (decades for most people). -- "If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out." -- If you choose to opt-out at a later date, they can still share all the data up to the date you opted out. You're only opt-ing out of any new data being shared... This is the part I really do not like. May be incorrect, but it certainly reads that way. I've also noticed they have updated the date they are collecting the data from on the website, yesterday. Now it says "This collection will start on 1 September 2021.", whereas it was 23rd June when I read yesterday. Not sure of the reason yet, but I wouldn't be surprised it is due to the back-lash on the lack of transparency on this, and time for people to process it. (I personally received no email, no letter etc - only read about it.) As they have actually made it very convoluted to know exactly how to do both opt-outs. It is another thing I really dislike... since this dodgy preference wording and making it difficult to opt-out is strictly against standard GDPR guidelines. This website gives some very easy-to-follow instructions on the exact steps to fully opt-out, should you chose to: https://medconfidential.org/how-to-opt-out/ I have myself, but up to you for your own data. This is a good post. A crucial point missed by those who cheerfully cry ‘it’s only anonymised data!’ is that data is only anonymous in isolation. Once data sets are combined and compared with other available data sets interested parties can buy access to, of which there are many, it’s fairly trivial to remove that anonymity and identify an individual precisely. The only sensible thing to do here is to opt out. So, how does someone get from having the knowledge that there are 200 men aged between 25 and 35 in Scunthorpe who have Herpes, to being able to know the name of any one of those men?" When you also know they are an asian gay man with 2 kids in a relationship (possibly with domestic violence) AND you have access to a Facebook microtargeted advertising budget? Don't need a name to cause mischief there. How about if you're a data warehousing/analysis/advertising company that, say, makes a mobile phone operating system and you have access to mobile gps celltower data from your customers. If you *also* have gp visit from this data, and you know when your clients visited a GP physically you've unmasked them. Your dataset is now much richer and more valuable to your clients. How about if you're a christian right-wing hate group with designs on banning abortion in the UK, or making it as inaccessible / unpleasant as possible. Fed this data you now know which GPs and practices refer for the most abortions and can put facea on the records attending at given dates and times becuase that's part of this data. Pseudonymisation is easily unpicked if you can make connections to other known facts. | |||
"I have been involved with many-a GDPR project (work with data, DBs, etc) & my view is fairly parallel to what Oddman posted above. Never assume the best when it comes to how well anonymized or safe your data is. No system is fool-proof. Whilst there will be a fair degree of obfuscation etc, at the end of the day they are doing this to be able to sell your data. Currently it sits in one system (probably a bit more secure than others). Once it is sold off, your data is now out in the open and there is no guarantee how secure it is. Although I work with a lot of data, I am a bit laissez-faire with it on various websites. So much of mine will already be out there. However this is medical information, so definitely more sensitive than some other data. The worrying thing is that the once the 'collection' date hits, I think, if you do not opt-out, they have ALL your information on you up to that date (decades for most people). -- "If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out." -- If you choose to opt-out at a later date, they can still share all the data up to the date you opted out. You're only opt-ing out of any new data being shared... This is the part I really do not like. May be incorrect, but it certainly reads that way. I've also noticed they have updated the date they are collecting the data from on the website, yesterday. Now it says "This collection will start on 1 September 2021.", whereas it was 23rd June when I read yesterday. Not sure of the reason yet, but I wouldn't be surprised it is due to the back-lash on the lack of transparency on this, and time for people to process it. (I personally received no email, no letter etc - only read about it.) As they have actually made it very convoluted to know exactly how to do both opt-outs. It is another thing I really dislike... since this dodgy preference wording and making it difficult to opt-out is strictly against standard GDPR guidelines. This website gives some very easy-to-follow instructions on the exact steps to fully opt-out, should you chose to: https://medconfidential.org/how-to-opt-out/ I have myself, but up to you for your own data. This is a good post. A crucial point missed by those who cheerfully cry ‘it’s only anonymised data!’ is that data is only anonymous in isolation. Once data sets are combined and compared with other available data sets interested parties can buy access to, of which there are many, it’s fairly trivial to remove that anonymity and identify an individual precisely. The only sensible thing to do here is to opt out. So, how does someone get from having the knowledge that there are 200 men aged between 25 and 35 in Scunthorpe who have Herpes, to being able to know the name of any one of those men? When you also know they are an asian gay man with 2 kids in a relationship (possibly with domestic violence) AND you have access to a Facebook microtargeted advertising budget? Don't need a name to cause mischief there. How about if you're a data warehousing/analysis/advertising company that, say, makes a mobile phone operating system and you have access to mobile gps celltower data from your customers. If you *also* have gp visit from this data, and you know when your clients visited a GP physically you've unmasked them. Your dataset is now much richer and more valuable to your clients. How about if you're a christian right-wing hate group with designs on banning abortion in the UK, or making it as inaccessible / unpleasant as possible. Fed this data you now know which GPs and practices refer for the most abortions and can put facea on the records attending at given dates and times becuase that's part of this data. Pseudonymisation is easily unpicked if you can make connections to other known facts. " There is also the FACT that data requests are reviewed by an independent panel before any data is released, and that they publish a record of all approved data requests... so we can see who is getting what data. NHS Digital say "The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data." Cal | |||
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"I have been involved with many-a GDPR project (work with data, DBs, etc) & my view is fairly parallel to what Oddman posted above. Never assume the best when it comes to how well anonymized or safe your data is. No system is fool-proof. Whilst there will be a fair degree of obfuscation etc, at the end of the day they are doing this to be able to sell your data. Currently it sits in one system (probably a bit more secure than others). Once it is sold off, your data is now out in the open and there is no guarantee how secure it is. Although I work with a lot of data, I am a bit laissez-faire with it on various websites. So much of mine will already be out there. However this is medical information, so definitely more sensitive than some other data. The worrying thing is that the once the 'collection' date hits, I think, if you do not opt-out, they have ALL your information on you up to that date (decades for most people). -- "If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out." -- If you choose to opt-out at a later date, they can still share all the data up to the date you opted out. You're only opt-ing out of any new data being shared... This is the part I really do not like. May be incorrect, but it certainly reads that way. I've also noticed they have updated the date they are collecting the data from on the website, yesterday. Now it says "This collection will start on 1 September 2021.", whereas it was 23rd June when I read yesterday. Not sure of the reason yet, but I wouldn't be surprised it is due to the back-lash on the lack of transparency on this, and time for people to process it. (I personally received no email, no letter etc - only read about it.) As they have actually made it very convoluted to know exactly how to do both opt-outs. It is another thing I really dislike... since this dodgy preference wording and making it difficult to opt-out is strictly against standard GDPR guidelines. This website gives some very easy-to-follow instructions on the exact steps to fully opt-out, should you chose to: https://medconfidential.org/how-to-opt-out/ I have myself, but up to you for your own data. This is a good post. A crucial point missed by those who cheerfully cry ‘it’s only anonymised data!’ is that data is only anonymous in isolation. Once data sets are combined and compared with other available data sets interested parties can buy access to, of which there are many, it’s fairly trivial to remove that anonymity and identify an individual precisely. The only sensible thing to do here is to opt out. So, how does someone get from having the knowledge that there are 200 men aged between 25 and 35 in Scunthorpe who have Herpes, to being able to know the name of any one of those men? When you also know they are an asian gay man with 2 kids in a relationship (possibly with domestic violence) AND you have access to a Facebook microtargeted advertising budget? Don't need a name to cause mischief there. How about if you're a data warehousing/analysis/advertising company that, say, makes a mobile phone operating system and you have access to mobile gps celltower data from your customers. If you *also* have gp visit from this data, and you know when your clients visited a GP physically you've unmasked them. Your dataset is now much richer and more valuable to your clients. How about if you're a christian right-wing hate group with designs on banning abortion in the UK, or making it as inaccessible / unpleasant as possible. Fed this data you now know which GPs and practices refer for the most abortions and can put facea on the records attending at given dates and times becuase that's part of this data. Pseudonymisation is easily unpicked if you can make connections to other known facts. There is also the FACT that data requests are reviewed by an independent panel before any data is released, and that they publish a record of all approved data requests... so we can see who is getting what data. NHS Digital say "The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data." Cal" Experience has made me somewhat cynical, and the communications approach taken with this initiative hasn't inspired any further confidence. This is an ongoing process, and promises made now aren't garuanteed. When the data becomes centralised, those conditions can be changed and it only needs to leak once. Once, like Aadhar, or Equifax. | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing." | |||
"Once the data is out there, just like photos on fab, there's no going back. The way that the government have done this, during a crisis, with minimal to no promotion of this, is beyond contemptuous. I opted out of last week because I fully disagree with how and what's being done. Patients NHS data is worth tens of billions a year, but this patient data must only be shared with fully informed consent. Its completely different, the data is just that bulk numbers of info, it is illegal to give out any info without personal consent. If you have any form of store card etc you will give away far more info that is personal to you and is sold on all the time. My son works for a company that uses algorithms to target ads etc, everytime we fill in a delivery address for anything you buy that info is sold on. There is nothing in the nhs data that can identify you. Good point. We give information out all the time in different ways. Who ever reads all the T&C on apps, orders, websites etc....... perhaps people should be more inquisitive as to how others use the data that they carelessly hand over about themselves. it's clear most people are too trusting when it comes to using the internet or mobile apps and that could well cause problems for them as the rules and regs are continuously erroded by the government. Exactly this. GDPR (EU legislation) is currently part of UK legislation (it was pretty much ported across). But for how long? The issue here though is that in future it may be possible to aggregate data sets to build a fuller picture. Yes google et al know your browsing history (what interests you) and know your location and purchase history but then imagine combining that with your medical history! People saying can’t happen now are missing that it could still happen in future. Legislation changes!" Google can literally identify somone from how they type on a keyboard. They know more about you than you do yourself | |||
"For information - From 1st July the Government will have the right to sell private medical records to third parties unless you explicitly opt-out. There is a cut-off date - 23rd June - to opt-out. Further details and how to opt-out can be found at digital.nhs.uk " is this doctors records or nhs hospital record ? | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing." There argument is why tell others about it. Id rather tell them Giving them an option choice so they could decide for themselves. | |||
" Google can literally identify somone from how they type on a keyboard. They know more about you than you do yourself" No they can't | |||
" Google can literally identify somone from how they type on a keyboard. They know more about you than you do yourself No they can't" Keystroke dynamics can definitely be applied to authentication. Whether Google actually uses it is a different matter, amd probably more legal than technical as several parties have patents on the technique. | |||
" Google can literally identify somone from how they type on a keyboard. They know more about you than you do yourself No they can't Keystroke dynamics can definitely be applied to authentication. Whether Google actually uses it is a different matter, amd probably more legal than technical as several parties have patents on the technique. " Whilst it is possible to use human interface dynamics to reinforce an identification, making a positive ID based solely on keystrokes is a million miles away from achievable. Firstly the clock based nature of modern computing has the effect of quantizing the rhythm of any input. Beyond that though, the number of variables that could modify the "gait" of a user's input... the time of day, weather, hydration/hunger levels, emotional condition, environmental distractions, etc... can all play a part, without knowing these variables and how each interacts with the user input, we've got nothing. Cal | |||
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"Bet everything is already in the hands of a hacker. Here comes your ransom demand email" Just backup anything important, then ransom ware is no problem | |||
"Bet everything is already in the hands of a hacker. Here comes your ransom demand email Just backup anything important, then ransom ware is no problem " But do they? Or it wouldnt happen would it | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing." Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share. | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing. Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share." My doctor practice has decided to opt everyone out | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing. Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share." Indeed and would have caused far less controversy! | |||
"Bet everything is already in the hands of a hacker. Here comes your ransom demand email Just backup anything important, then ransom ware is no problem " Depends how sensitive that information is and whether you want it to remain private! | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing. Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share. My doctor practice has decided to opt everyone out" Are they allowed to do that? Have they informed all patients in the practice of this decision? | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing. Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share. Indeed and would have caused far less controversy!" see i was sure that the last lot of changes to gdpr law was that “opt out if you don’t want” was no longer acceptable and companies had to have positive confirmation to use your data - its why every single website asks about cookies now rather than you having to do the leg work to have them stopped so that tells me either the law was changed again or this data is entirely anonymised and nothing to be concerned about | |||
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"GDPR was a european law .... it got hugely watered down when we brexited owing to cummings's desire for eveyones data to be centralised and cross referenced by government." it hasn't been altered at all, do you dream this stuff up or just having a laugh ? | |||
"GDPR was a european law .... it got hugely watered down when we brexited owing to cummings's desire for eveyones data to be centralised and cross referenced by government. it hasn't been altered at all, do you dream this stuff up or just having a laugh ?" Yep GDPR was ported over into UK law. Doesn’t mean it cannot be deviated from/altered in future but not currently. | |||
"GDPR was a european law .... it got hugely watered down when we brexited owing to cummings's desire for eveyones data to be centralised and cross referenced by government. it hasn't been altered at all, do you dream this stuff up or just having a laugh ? Yep GDPR was ported over into UK law. Doesn’t mean it cannot be deviated from/altered in future but not currently." I might get to shag liz Hurley but not currently. Anything can change | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing. Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share. My doctor practice has decided to opt everyone out Are they allowed to do that? Have they informed all patients in the practice of this decision? " Emails sent out advising and also posted on social media page | |||
"GDPR was a european law .... it got hugely watered down when we brexited owing to cummings's desire for eveyones data to be centralised and cross referenced by government. it hasn't been altered at all, do you dream this stuff up or just having a laugh ? Yep GDPR was ported over into UK law. Doesn’t mean it cannot be deviated from/altered in future but not currently. I might get to shag liz Hurley but not currently. Anything can change" Would you still want to though? Really? Posh totty I guess! | |||
"GDPR was a european law .... it got hugely watered down when we brexited owing to cummings's desire for eveyones data to be centralised and cross referenced by government. it hasn't been altered at all, do you dream this stuff up or just having a laugh ? Yep GDPR was ported over into UK law. Doesn’t mean it cannot be deviated from/altered in future but not currently. I might get to shag liz Hurley but not currently. Anything can change Would you still want to though? Really? Posh totty I guess!" Too right, she looks a right dirty girl, | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing. Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share. My doctor practice has decided to opt everyone out Are they allowed to do that? Have they informed all patients in the practice of this decision? Emails sent out advising and also posted on social media page " Your surgery is being very prudent and has protected itself from any potential gdpr claims in my opinion. | |||
"GDPR was a european law .... it got hugely watered down when we brexited owing to cummings's desire for eveyones data to be centralised and cross referenced by government." Prior to Brexit, ALL EU laws were duplicated into British Law... obviously to prevent a situation where there is no law in place for a given situation. These laws were re-worded where needed to allow for domestic terminologies. Some laws have subsequently been revised, but GDPR isn't one of them. | |||
"Not sure why there is any argument here? Some don’t want their data shared so can OPT OUT. Some aren’t bothered so they can stay opted in by doing nothing. Would be nicer if it was the other way round and you were opted out by default and could opt in if you would prefer to share. My doctor practice has decided to opt everyone out Are they allowed to do that? Have they informed all patients in the practice of this decision? Emails sent out advising and also posted on social media page " This is confusing as it appears to be the opposite of the official communication that is being pushed out across far more channels of communication than an email and a message on a Facebook page. Would be interested in any legal implications of this surgery overriding the policy/approach being used nationally by the NHS. | |||
"Would be interested in any legal implications of this surgery overriding the policy/approach being used nationally by the NHS." Unless other surgerys follow suit that surgery will face bullying and threats to remove there funding form them. | |||
"Do what you want with mine, I'm on a Google device for heaven's sake. Mines already been sold three hundred times. Typical sheeple reaction" Typical nutter reaction? | |||
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It displays the correct last 3 digits of my mobi number | |||
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"Has anyone managed to opt out via the digital website? https://digital.nhs.uk/services/national-data-opt-out It's says it found my details and will send a text to my mobi with a security code but I never receive one It displays the correct last 3 digits of my mobi number "It worked fine for me. "You cant opt out of it online It has to be by a downloadable letter filled out and sent/or handed in to your doctors surgery." There's two different opt-outs. You're referring to the Type 1 op-out, and the quote I've mentioned above is for the type 2 opt-out. For steps on how to do both, this website is very useful and allows you to download said letters. https://medconfidential.org/how-to-opt-out/ (P.S. It is ridiculous they request an opt-out by letter. Barrier to opting out.) | |||
" It worked fine for me. (P.S. It is ridiculous they request an opt-out by letter. Barrier to opting out.) " Thanks,for the first point, not sure why it ain't working for me I find it scandalous that an organisation calling itself 'digital nhs' haven't provided a digital solution, printing documents is not an option for me so I'll need to call them | |||
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"We don’t give a shit if they do or not… lol." I would guess that most feel the same | |||
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