Patients win partial right to block medical records in U turn on CfH IT project
Labour Ministers have bowed to the complete distrust some patients have of the planned National Health Service electronic patient record by agreeing they will be able to place a total block on their records being uploaded to the system - rather than just a bar on them being shared. Precisely how they will be able to do that, however, has yet to be established ahead of pilot projects planned for the spring.
The concession came as the health department groped marginally closer to a potentially workable compromise between itself and warring factions of doctors over whether patients should be required to opt in, or should be allowed to opt out, of having their electronic record shared.
But there seems little prospect of a full summary care record being available nationally by 2010.
Pilots of an extremely limited summary - covering present medications, adverse drug reactions and allergies - would go ahead next year, said Lord Warner, the discredited and soon to depart health minister in charge of the programme.
A public information campaign will be run locally, telling patients they have an as yet undefined period of time - perhaps a couple of months - to view their record and correct or amend it. That could be done via the electronic patient portal known as healthspace, or by viewing a printed copy.
They will be able to give explicit consent that their record is shared. However, those who do not reply after a "realistic" period of time will be assumed to have given implied consent - the position the government has held up to now.
Ministers have, however, recognised that "some patients may ask for their summary care record not to be shared or uploaded at all", and Lord Warner said the government may honour that.
How that will be achieved, both practically and in IT terms, has still to be considered, ahead of the pilots by an advisory group. Whether the new approach will involve writing to every patient to tell them their records are going to be uploaded, rather than relying on public information techniques, is also not clear.
Lord Warner said: "We are now going forward," but he added "cautiously". He noted that it took the Veterans Administration in the US 10 years to get to a full summary record with which both patients and clinicians were comfortable.
His statement implies that while the technical infrastructure may be in place by 2010, a full summary record is unlikely to be universally in use by then, given that the limited pilot projects are expected to last into 2008.
Taken from:
http://www.ft.com/cms/s/97f93b44-8f05-11db-a7b2-0000779e2340.html
http://www.guardian.co.uk/comment/story/0,,1976589,00.html
Health Direct warns- don't break out the champagne yet. The report was cleverly spun; hidden in an appendix is confirmation that you can opt out of the Summary Care Record, but not from the Detailed Care Record.
The first is merely a synopsis for emergency care. It will have your current prescriptions, and will say, for example, whether you are diabetic. But ministers are not offering an easy opt-out from the second - the database replacing your current GP and hospital records. They plan to "upload" your GP data over the next year or two to a regional hosting centre run by a government contractor. The data will initially remain under your GP's nominal control but, after hospital records have been uploaded too, the chief medical officer will be the custodian of the whole lot.
Your "electronic health record" will be used for many purposes, from cost control through audit to research. So the Home Office plans to use health data to help predict which children are likely to offend (despite a recent report to the information commissioner that collecting large amounts of data on children without their parents' consent will probably break human rights law).
Yet confidentiality is often vital for care. Victims of child abuse are more likely to contact Childline than the child protection services, as Childline is seen as confidential. So if your GP asks your teenage children whether they indulge in under-age sex, will it be safe to tell?
Ministers say that the rules for police access to data will not change, but this masks a practical shift. At present the law allows the police access to health records that contain evidence of a crime. In practice, they will not ask a judge to order your GP to hand over the record of your 15-year-old daughter's morning-after pill. The effort is too great and the reward too small.
But once the records of millions of people are on one system, to which a court will give access without GPs' knowledge, the police will be sorely tempted. They already collect all sorts of operationally useful data: they have had access to opiate prescriptions for years, and there's been a steady rise in their requests for journey data from London's Oyster card system.
Undermining medical privacy will harm many vulnerable groups, from children to rape victims. Letting civil servants rather than doctors set the trade-offs between medical privacy and other goals will also be a major change.
Ministers say you will only be able to opt out of a detailed care record if you can show "substantial mental distress". This is a bluff. You can use the letter from the Health Direct this link Save your medical confidentiality- warning over privacy of 50m patient files in NHS IT project to order your GP not to upload your records in the first place.
The NHS computer project also has grave safety and performance problems. Moving patient records from the hospital or surgery to remote computer centres means that network failures cause havoc. What's more, the NHS computer system is showing all the classic symptoms of turning into a software project disaster, with changing specifications, slipping deadlines and soaring costs. The NHS must not be dependent on it.
The convoy is heading for the rocks, and perhaps only one man can alter its course. Gordon Brown will have to decide soon whether to scrap the central database and build safe systems that will work. If he calls it wrong then - as with Bliar and Iraq - it may well be the decision for which he is remembered.
The concession came as the health department groped marginally closer to a potentially workable compromise between itself and warring factions of doctors over whether patients should be required to opt in, or should be allowed to opt out, of having their electronic record shared.
But there seems little prospect of a full summary care record being available nationally by 2010.
Pilots of an extremely limited summary - covering present medications, adverse drug reactions and allergies - would go ahead next year, said Lord Warner, the discredited and soon to depart health minister in charge of the programme.
A public information campaign will be run locally, telling patients they have an as yet undefined period of time - perhaps a couple of months - to view their record and correct or amend it. That could be done via the electronic patient portal known as healthspace, or by viewing a printed copy.
They will be able to give explicit consent that their record is shared. However, those who do not reply after a "realistic" period of time will be assumed to have given implied consent - the position the government has held up to now.
Ministers have, however, recognised that "some patients may ask for their summary care record not to be shared or uploaded at all", and Lord Warner said the government may honour that.
How that will be achieved, both practically and in IT terms, has still to be considered, ahead of the pilots by an advisory group. Whether the new approach will involve writing to every patient to tell them their records are going to be uploaded, rather than relying on public information techniques, is also not clear.
Lord Warner said: "We are now going forward," but he added "cautiously". He noted that it took the Veterans Administration in the US 10 years to get to a full summary record with which both patients and clinicians were comfortable.
His statement implies that while the technical infrastructure may be in place by 2010, a full summary record is unlikely to be universally in use by then, given that the limited pilot projects are expected to last into 2008.
Taken from:
http://www.ft.com/cms/s/97f93b44-8f05-11db-a7b2-0000779e2340.html
http://www.guardian.co.uk/comment/story/0,,1976589,00.html
Health Direct warns- don't break out the champagne yet. The report was cleverly spun; hidden in an appendix is confirmation that you can opt out of the Summary Care Record, but not from the Detailed Care Record.
The first is merely a synopsis for emergency care. It will have your current prescriptions, and will say, for example, whether you are diabetic. But ministers are not offering an easy opt-out from the second - the database replacing your current GP and hospital records. They plan to "upload" your GP data over the next year or two to a regional hosting centre run by a government contractor. The data will initially remain under your GP's nominal control but, after hospital records have been uploaded too, the chief medical officer will be the custodian of the whole lot.
Your "electronic health record" will be used for many purposes, from cost control through audit to research. So the Home Office plans to use health data to help predict which children are likely to offend (despite a recent report to the information commissioner that collecting large amounts of data on children without their parents' consent will probably break human rights law).
Yet confidentiality is often vital for care. Victims of child abuse are more likely to contact Childline than the child protection services, as Childline is seen as confidential. So if your GP asks your teenage children whether they indulge in under-age sex, will it be safe to tell?
Ministers say that the rules for police access to data will not change, but this masks a practical shift. At present the law allows the police access to health records that contain evidence of a crime. In practice, they will not ask a judge to order your GP to hand over the record of your 15-year-old daughter's morning-after pill. The effort is too great and the reward too small.
But once the records of millions of people are on one system, to which a court will give access without GPs' knowledge, the police will be sorely tempted. They already collect all sorts of operationally useful data: they have had access to opiate prescriptions for years, and there's been a steady rise in their requests for journey data from London's Oyster card system.
Undermining medical privacy will harm many vulnerable groups, from children to rape victims. Letting civil servants rather than doctors set the trade-offs between medical privacy and other goals will also be a major change.
Ministers say you will only be able to opt out of a detailed care record if you can show "substantial mental distress". This is a bluff. You can use the letter from the Health Direct this link Save your medical confidentiality- warning over privacy of 50m patient files in NHS IT project to order your GP not to upload your records in the first place.
The NHS computer project also has grave safety and performance problems. Moving patient records from the hospital or surgery to remote computer centres means that network failures cause havoc. What's more, the NHS computer system is showing all the classic symptoms of turning into a software project disaster, with changing specifications, slipping deadlines and soaring costs. The NHS must not be dependent on it.
The convoy is heading for the rocks, and perhaps only one man can alter its course. Gordon Brown will have to decide soon whether to scrap the central database and build safe systems that will work. If he calls it wrong then - as with Bliar and Iraq - it may well be the decision for which he is remembered.
posted by Dr Search- Principal Consultant at the Search Clinic at
9:07 AM
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