Comments on: TBOO on http://www.thebigoptout.com/?p=37 Protect your privacy and campaign to preserve medical confidentiality Fri, 19 Mar 2010 14:45:37 +0000 http://wordpress.org/?v=2.8.6 hourly 1 By: Dr Lisa Silver http://www.thebigoptout.com/?p=37&cpage=1#comment-97 Dr Lisa Silver Fri, 29 Dec 2006 20:36:17 +0000 http://www.nhsconfidentiality.org/?p=37#comment-97 I am a practising GP seeing about 1000 patients a month both in- hours and for the out- of- hours service. So, tell me, how famous do you have to be NOT to be on the spine. Am I really going to be able to idly look at Tony Blairs records. How about the Big Brother contestant, one day an obscurity and the next a celebrity with a past and a juicy past at that. I know as well as the next man that accessing their notes leaves a trace, but what if I am short of cash and someone is waving fivers at me for info. If the famous are not going to be on the spine, this invalidates the spine. I practice in an affluent area with a cross section of musicians, celebs etc. They will most definitely not want anyone other than their GP having any access at all to their notes. The more serious side of the NHS spine is a clinical one. I simply do NOT need to have a patients record in front of me to treat them - in fact reliance on what is on the screen will lead to deaths and not prevent them. Non-clinicians seem to think that we need the records in order to make a decision. This is completely untrue. Taking a history and forming a conclusion is the bulk of ones medical training and takes 3-4 years without the benefit of having a summary of a patients record. Take the following scenario - a genuinely true example. I once looked after 4 women, all with the same name, all in hospital with the same operation and all on a 4 bedded bay and all, yes all from the same street up north. Impossible you might say but true. They all had limited English. One of them was diabetic. What happens when one of them (not diabetic) presents in a semi comatose state to A and E. Rather than the clinician using his nouse and basing his clinical opinion on the patient before him, he will believe the screen, he will believe the patients records which are telling him the comatose patient is in a diabetic coma when the likelihood is that they are not - presuming he picks the wrong patient from the pick list Until such time as we can identify the patient the spine will kill people. The Spine is dangerous. A and E doctors will not be walking around with Personal devices to access records, they are going to have to wait to get onto a screen to input the data, at which point they pick from a list of patients because they have had to wait for access and hey presto the wrong one is picked. Finally cogitate on this one. Let us say you decide to become an imposter. Let us say you are a journalist wishing to know about a patients history because you suspect they have Aids. The patient might be a captain of industry let us suppose. Let us say you roll up to casualty and announce your false identity and address ( it is easy to find out where people live so this will not be a problem) the casualty officer does not know who you really are, brings up your notes and in the course of the conversation, says, so you are taking the following medications: Retrovir. Immediately you know what a patient is on and he has AIDs, and then whilst the cas officer is not looking you leave the A and E. These situations will happen, confidentiality will be broken. We dont need the spine. As a GP and a GP that is a local negotiator with the primary care trust, I have never once been consulted about the spine - none of my colleagues have either. The spine will be used as a billing mechanism under the new financial arrangements for the NHS which came into force on 1.4.06. and in the process we have lost a very vital part of our rights which is the right to have our medical records held confidentially. I am a practising GP seeing about 1000 patients a month both in- hours and for the out- of- hours service.
So, tell me, how famous do you have to be NOT to be on the spine. Am I really going to be able to idly look at Tony Blairs records. How about the Big Brother contestant, one day an obscurity and the next a celebrity with a past and a juicy past at that. I know as well as the next man that accessing their notes leaves a trace, but what if I am short of cash and someone is waving fivers at me for info. If the famous are not going to be on the spine, this invalidates the spine. I practice in an affluent area with a cross section of musicians, celebs etc. They will most definitely not want anyone other than their GP having any access at all to their notes.

The more serious side of the NHS spine is a clinical one. I simply do NOT need to have a patients record in front of me to treat them – in fact reliance on what is on the screen will lead to deaths and not prevent them. Non-clinicians seem to think that we need the records in order to make a decision. This is completely untrue. Taking a history and forming a conclusion is the bulk of ones medical training and takes 3-4 years without the benefit of having a summary of a patients record.
Take the following scenario – a genuinely true example. I once looked after 4 women, all with the same name, all in hospital with the same operation and all on a 4 bedded bay and all, yes all from the same street up north. Impossible you might say but true. They all had limited English. One of them was diabetic. What happens when one of them (not diabetic) presents in a semi comatose state to A and E. Rather than the clinician using his nouse and basing his clinical opinion on the patient before him, he will believe the screen, he will believe the patients records which are telling him the comatose patient is in a diabetic coma when the likelihood is that they are not – presuming he picks the wrong patient from the pick list
Until such time as we can identify the patient the spine will kill people.
The Spine is dangerous. A and E doctors will not be walking around with Personal devices to access records, they are going to have to wait to get onto a screen to input the data, at which point they pick from a list of patients because they have had to wait for access and hey presto the wrong one is picked.

Finally cogitate on this one. Let us say you decide to become an imposter. Let us say you are a journalist wishing to know about a patients history because you suspect they have Aids. The patient might be a captain of industry let us suppose. Let us say you roll up to casualty and announce your false identity and address ( it is easy to find out where people live so this will not be a problem) the casualty officer does not know who you really are, brings up your notes and in the course of the conversation, says, so you are taking the following medications: Retrovir. Immediately you know what a patient is on and he has AIDs, and then whilst the cas officer is not looking you leave the A and E. These situations will happen, confidentiality will be broken. We dont need the spine.
As a GP and a GP that is a local negotiator with the primary care trust, I have never once been consulted about the spine – none of my colleagues have either.
The spine will be used as a billing mechanism under the new financial arrangements for the NHS which came into force on 1.4.06. and in the process we have lost a very vital part of our rights which is the right to have our medical records held confidentially.

]]> By: Dave http://www.thebigoptout.com/?p=37&cpage=1#comment-82 Dave Mon, 25 Dec 2006 11:46:44 +0000 http://www.nhsconfidentiality.org/?p=37#comment-82 I dont think people are complaining about IT. For example I have no problem with my GP storing data on a system at his/her practice, he/she can send relevant data to a consultant via a secure connection and results can be sent back via the same connection. Computres can allow data to be held more secure if done right (3/5th od health professionals do not use adequate protection on portable systems as it is and a few are under the impression patients could not care less about who knows their info). Access can be filltered, but again this is rarely done in practice and I should know, I have been in practices where all staff have full access and are alloweed to access data that they do not need to know, e.g. nurses at an asthma cliniv being allowed to know if a patient has ever been raped, abused, sexul problems and EVERY other condition they seen a doctor/nurse for, I have even been in practices where adim staff are allowed to know everything about patients without consent and I know of an agency in Preston that allows admin staff to access data even though they have reason to hold a grudg against the patient and where they have ben denied access by the patient). These are the type of people that will have access to the spine. There is no need for identifiable data to go to SUS (I can back this up if you do not believe me), there is no need for the data to go via a national database and the goverments need for data should not prevent people accessing health care (something CfH will do). What CfH will do is allow more staff to access more data without consent. At which point will the doctor at A&E have the time to go through your detailed medical records? Why would ythe consultant need to go through them if the GP had sent the RELEVANT data? Computers can be a good thing, but not the way CfH are\doing it. Medical data is already far more widely shared than it used to be and more than patients know (for example the controversial section 60 request). The spine will not help patients, will destroy the reputation of the health profession in the UK, patients that hae been informed of the danger the spoine posses will withhold data. In the future it will be a case of tell everyone, or tell no one, how is that a step forward? I dont think people are complaining about IT. For example I have no problem with my GP storing data on a system at his/her practice, he/she can send relevant data to a consultant via a secure connection and results can be sent back via the same connection. Computres can allow data to be held more secure if done right (3/5th od health professionals do not use adequate protection on portable systems as it is and a few are under the impression patients could not care less about who knows their info). Access can be filltered, but again this is rarely done in practice and I should know, I have been in practices where all staff have full access and are alloweed to access data that they do not need to know, e.g. nurses at an asthma cliniv being allowed to know if a patient has ever been raped, abused, sexul problems and EVERY other condition they seen a doctor/nurse for, I have even been in practices where adim staff are allowed to know everything about patients without consent and I know of an agency in Preston that allows admin staff to access data even though they have reason to hold a grudg against the patient and where they have ben denied access by the patient). These are the type of people that will have access to the spine.

There is no need for identifiable data to go to SUS (I can back this up if you do not believe me), there is no need for the data to go via a national database and the goverments need for data should not prevent people accessing health care (something CfH will do).

What CfH will do is allow more staff to access more data without consent.

At which point will the doctor at A&E have the time to go through your detailed medical records? Why would ythe consultant need to go through them if the GP had sent the RELEVANT data?

Computers can be a good thing, but not the way CfH are\doing it. Medical data is already far more widely shared than it used to be and more than patients know (for example the controversial section 60 request). The spine will not help patients, will destroy the reputation of the health profession in the UK, patients that hae been informed of the danger the spoine posses will withhold data. In the future it will be a case of tell everyone, or tell no one, how is that a step forward?

]]> By: Peter Jones http://www.thebigoptout.com/?p=37&cpage=1#comment-80 Peter Jones Sun, 24 Dec 2006 15:45:11 +0000 http://www.nhsconfidentiality.org/?p=37#comment-80 This debate is crucial and not novel (the Government Data Network 1980s ...), but as clinicians if we criticise the need for ICT tools then I and my colleagues are 'hypocrites'. Once we have our slippers on - we book holidays, shop, and buy cars on-line; we write essays on home PCs, laptops, and then we go to work … Next to commerce, health and social care is one of the most distributed and multidisciplinary occupations and yet in informatics terms health and social care is in the Dark Ages. Just how long does it take to achieve integrated and holistic care – more than 30 years? There are at least two problems. One is that "digital identity" does not revolve around the individual, but remains service-organisation centric. This has to change and will eventually with the evolution of Identity 2.0 - (see OSCON 2005 Keynote). Secondly, this debate (rightly) highlights just how immature our understanding of ‘information’ is. We appreciate the value of the census and our obligations as citizens, but ‘health’ transcends the individual. We do need to watch those who watch us - souveillance. Staff want and need a modern health and social care system whatever - ‘NPfIT’ – IT is called. This issue is not just about individuals though, true they ARE the key focus for care delivery. But, health is becoming increasingly entangled with ecosystem concerns and quality of life. As the population pyramid changes, services must change too. To state the obvious 'populations' matter, but without data where are we? 'Public Health' is an established discipline and yet it struggles for attention amid the ongoing priority melee. Wither then public MENTAL health? Younger care students quickly realise the misnomer that is the ‘National HEALTH Service’. If services do not change and address personal and community health literacy, then that could prove the real crisis? Balance in all things. We need to maintain a sociotechnical perspective as afforded by such tools as Hodges' model. We will (must!) get there. I hope so as I sit here with my Santa hat, wearing my ape-man slippers… Season's Greetings This debate is crucial and not novel (the Government Data Network 1980s …), but as clinicians if we criticise the need for ICT tools then I and my colleagues are ‘hypocrites’. Once we have our slippers on – we book holidays, shop, and buy cars on-line; we write essays on home PCs, laptops, and then we go to work …

Next to commerce, health and social care is one of the most distributed and multidisciplinary occupations and yet in informatics terms health and social care is in the Dark Ages. Just how long does it take to achieve integrated and holistic care – more than 30 years?

There are at least two problems. One is that “digital identity” does not revolve around the individual, but remains service-organisation centric. This has to change and will eventually with the evolution of Identity 2.0 – (see OSCON 2005 Keynote). Secondly, this debate (rightly) highlights just how immature our understanding of ‘information’ is. We appreciate the value of the census and our obligations as citizens, but ‘health’ transcends the individual. We do need to watch those who watch us – souveillance.

Staff want and need a modern health and social care system whatever – ‘NPfIT’ – IT is called. This issue is not just about individuals though, true they ARE the key focus for care delivery. But, health is becoming increasingly entangled with ecosystem concerns and quality of life. As the population pyramid changes, services must change too.

To state the obvious ‘populations’ matter, but without data where are we? ‘Public Health’ is an established discipline and yet it struggles for attention amid the ongoing priority melee. Wither then public MENTAL health? Younger care students quickly realise the misnomer that is the ‘National HEALTH Service’. If services do not change and address personal and community health literacy, then that could prove the real crisis?

Balance in all things. We need to maintain a sociotechnical perspective as afforded by such tools as Hodges’ model. We will (must!) get there. I hope so as I sit here with my Santa hat, wearing my ape-man slippers…

Season’s Greetings

]]> By: Dave http://www.thebigoptout.com/?p=37&cpage=1#comment-78 Dave Sun, 24 Dec 2006 15:18:18 +0000 http://www.nhsconfidentiality.org/?p=37#comment-78 Does your country allow others to view your medical records? Are you able to access health care if you say no? Are you allowed to know who knows what about you? Did your goverment force all your doctors/nurses to ignore their ethical principles and let other access you infor without your consent? The UK alreday has among the lowest safegaurds of medical data anywhere in the world. I could easily name practices where admin staff are allowed access without patient consent, where nurses at asthma clinics are allowed to know if a patient has been raped, abused, had sexual problems and everything else without patient consent, I could name practices that remove patients from their list if they try retrict access even though the GMC and NHS says patient can restrict access. I van name PCTs where how medical data is obtained is not relevant, I can name a whole host of people that everyday lie to patients, share data without consent then refuse to put in writing who knows what about the patient. Medical data can be extreamly personal and the patient does not need to justify keeping it private. You might not care who kows about your your info but som people do. 'Nothing to hide, nothing to fear' has no place in medical info sharing, simply because you do not want others to know you have been raped does not make you danagerious and it is entirley unethical and imporal to even imply such a thing. If you want to use it, then mayby you should be asking doctors/nurses why they do not want to be transparent with patients when it comes to who will know their info. You could try asking our MPs why they are misleading the public, why they mislead the BMA and why thy have the transparency of a brick wall. Does your country allow others to view your medical records? Are you able to access health care if you say no? Are you allowed to know who knows what about you? Did your goverment force all your doctors/nurses to ignore their ethical principles and let other access you infor without your consent?

The UK alreday has among the lowest safegaurds of medical data anywhere in the world. I could easily name practices where admin staff are allowed access without patient consent, where nurses at asthma clinics are allowed to know if a patient has been raped, abused, had sexual problems and everything else without patient consent, I could name practices that remove patients from their list if they try retrict access even though the GMC and NHS says patient can restrict access. I van name PCTs where how medical data is obtained is not relevant, I can name a whole host of people that everyday lie to patients, share data without consent then refuse to put in writing who knows what about the patient.

Medical data can be extreamly personal and the patient does not need to justify keeping it private. You might not care who kows about your your info but som people do.

‘Nothing to hide, nothing to fear’ has no place in medical info sharing, simply because you do not want others to know you have been raped does not make you danagerious and it is entirley unethical and imporal to even imply such a thing. If you want to use it, then mayby you should be asking doctors/nurses why they do not want to be transparent with patients when it comes to who will know their info. You could try asking our MPs why they are misleading the public, why they mislead the BMA and why thy have the transparency of a brick wall.

]]> By: Tim http://www.thebigoptout.com/?p=37&cpage=1#comment-75 Tim Thu, 21 Dec 2006 20:04:28 +0000 http://www.nhsconfidentiality.org/?p=37#comment-75 Whatever. It really is time the NHS got itself some proper IT. I live in a small country of around 7m people, with 4 not-for-profit HMOs. I can login securely to my HMOs website, book appointments, view current and historic test results, prescription records, nurse/GP visits, and details of any co-payments. Blood tests are usually taken in the morning, and I can see the results online by midday. Nobody here thinks this is unusual, or worries about privacy. But then we all carry round ID cards, and nobody gives a flying flip about that either. These things just make life easier. Naive? Probably. Paranoid? No... life's too short for that. Remember folks, if you've done nothing wrong, you've got nothing to be afraid of! Boo! Whatever. It really is time the NHS got itself some proper IT. I live in a small country of around 7m people, with 4 not-for-profit HMOs. I can login securely to my HMOs website, book appointments, view current and historic test results, prescription records, nurse/GP visits, and details of any co-payments. Blood tests are usually taken in the morning, and I can see the results online by midday. Nobody here thinks this is unusual, or worries about privacy. But then we all carry round ID cards, and nobody gives a flying flip about that either. These things just make life easier. Naive? Probably. Paranoid? No… life’s too short for that.

Remember folks, if you’ve done nothing wrong, you’ve got nothing to be afraid of! Boo!

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