The Care Data protests have forced NHS England rather unapologetically to delay the collection of data from GPs until the autumn The NHS England website http://www.england.nhs.uk/2014/02/19/response-info-share/ states:
To ensure that the concerns of the BMA, RCGP, Healthwatch and other groups are met, NHS England will:
• Begin collecting data from GP surgeries in the Autumn, instead of April, to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to;
• Work with patients and professional groups – including the BMA, RCGP and Healthwatch – to develop additional practical steps to promote awareness with patients and the public, and ensure information is accessible and reaches all sections of the community, including people with disabilities;
• Look into further measures that could be taken to build public confidence, in particular steps relating to scrutiny of ways in which the information will be used to benefit NHS patients
The gathering protests also led to the current Health Select Committee inquiry which met yesterday (25thFeb) to get the background. It will get some written evidence and then hold at least one more session to look at proposals for improving the system.
There are several version of why the postponement took place, one being that if the policy was successfully challenged in the courts it would be GPs who would be held liable for permitting the data to be collected rather than NHS England.
GP reaction has varied from trying to opt out all their patients (resulting in threats - late withdrawn - to suspend the GP), some actively contacting patients to tell them about opting out, and others making it pretty difficult to opt out.
It's worth stating that this is a really important issue and the potential value for patient care of the database has led many of those involved to ignore some of the difficulties about setting it up. For a sensitive discussion by Ben Goldacre (and various comments)
There are two issues: one about care data; and one about the arrogance, evasion and apparent incompetence of some types of senior NHS management.
1) Care Data:
Stones are now being rolled back revealing a lot of thoughtless and possibly murky practice. This includes the failure of the new Health and Social Care Information Centre to start this process without having developed and consulted on a code of practice as required by the 2012 Act; the possibility until assurances given this week that even if people opted out, some data would have been extracted; the failure of NHS England to communicate with properly with GPs, let alone the public; and last year's decision of the NHS Information Centre which preceded the new organisation to give the contract for extracting data from GPs to ATOS. It is quite incredible that NHS information managers could have given ATOS the contract to extract data even before pseudonymisation, however fast they were going to transfer it to the 'safe haven' of the HSCIC. If, as was said yesterday, it is technically difficult to psuedonymise the data before or when extracted, then the contract should not have been given to an organisation which has a clear conflict of interest. No way is this in the interests of patients as required by law. The managers also appeared unable to give the Select Committee any firm assurances that the DWP would not be able to access this personal medical data. Both of these factors might well influence a decision to opt out unless further protection is built in.
At least with the Select Committee's involvement, revised plans for care data collection will be opened to public scrutiny and to direct challenge by organisations like Medical Confidential.
All this is a gift to the right wing press like the Telegraph and the Mail which can refer to the NHS thought police. The Telegraph secured an added scoop by revealing (under a misleading headline) that hospital care data for millions of patients was sold (at cost) to representatives of insurance companies who were able to match it up with credit rating information from Experian and use it to raise premiums. What's more the Tories are claiming first that patients were never given the chance by the previous government to opt out from the centralisation of this data (true but the significance of the data is different) and secondly that this was only possible under the previous regime and it cannot happen under the safeguards of the Health and Social Care Act 2012 (something challenged by Medical Confidential and not convincingly defended by the minister and NHS witnesses yesterday).
2) NHS England and the Secretary of State.
Although the Secretary of State remains formally accountable under the 2012, it was clear that it was NHS England on to which the ordure was being shovelled. As one Committee Member pointed out, the Ministerial witness, Dr Dan Poulter, was pretty silent and not able to answer matters of detail.
Evidence is emerging that some of the national organisations set up under the Act are not doing too well. For instance the staff survey of Public Health England reveals very low morale and its head has failed to demonstrate his independence from government. Meanwhile NHS England is affected first by the departure of many skilled staff because of Lansley's reorganisation and cuts, secondly by the pressures being put on those who remain and are in an entirely new structure, and thirdly by an increased tendency, when under pressure, not just to take short cuts but to preserve some of the dictatorial trends of previous centralised NHS regimes. We have already complained about the lack of transparency and accessibility of the local NHS England office. The implementation of the Friends and Family Test is also proving dubious.
The senior managers at HSCIC(some with past private sector involvement) seem to have let their obsession with getting hold of data and their lack of principle in determining end users, get in the way of any understanding of how the public might perceive it. They ostensibly agree that a person's health records are their property but don't take on the implications. They also hide behind the relatively recent creation of the HSCIC to deny any responsibility for or even access to the decisions of the previous NHS Information Centre. As one MP commented, their actions have threatened the doctor patient relationship and discredited the NHS.
They are not going to go, unfortunately, at least for the time being; so we have to hope that some of the damage can be repaired by the processes now being put in place to improve some of the technical aspects of data collection, to tell people more clearly about what is involved, and to make it much simpler to opt out if people wish. The campaign needs to go on in order to exert maximum pressure for an acceptable system. If it cannot be made acceptable, it should not happen.
We are a grassroots movement comprising people from all walks of life who are, or will be affected by the government’s austerity measures and spending cuts to NHS Services across England. We also strongly oppose the creeping privatisation of the NHS by successive governments. Privatisation = Profit not Good Patient Care
Wednesday, 26 February 2014
Monday, 3 February 2014
Electronic Centralisation of your NHS medical records. Should you opt out?
Did you realise that in March your GP records will be loaded into a centralised data bank unless you opt out and that this data may be sold on? What is this about and why does it matter? What has happened to medical confidentiality?
During January households in England should have received a leaflet from NHS England outlining its expansion of centralised care data records by uploading everyone’s GP records into a centralised data bank. Of course if you have opted out of receiving junk mail, you won’t have got it? Or it may have got included in a bundle of commercial junk mail which you immediately recycled. Maybe you looked at it and thought what has this got to do with me and ignored it? Maybe you read it but didn’t fully understand what it was about? Or maybe you are part of a small minority of the population who read it and took a conscious decision either to permit your data to be used in this way or to opt out by contacting your GP surgery.
Details about how to opt out including a link to a form are at the end of this post.
There are good arguments for both decisions and it is one for individuals to take. The well known academic and campaigner Alyson Pollock illustrates the difficulty when she calls for opting in to data centralisation but out of data being sold. So why is it a matter for organisations which seek to defend the NHS? Why are organisations like Keep Our NHS Public calling for mass opt outs? After all, this initiative comes from the NHS.
The reason is firstly that the way this scheme has come about is a direct result of the 2012 Health and Social Care Act; secondly that the way it is being implemented (including the dreadful information campaign) is partly because of the NHS structure imposed by the Act; thirdly that it ignores the principle of explicit consent, and fourthly that the fragmentation of the NHS means that data is far more accessible to outsiders including companies which want to use it for profit. Even if the data cannot be shared for the purposes of calculating insurance, the more data which is available in any form to private sector companies with or without NHS contracts, the greater the possibility that it will be used for purposes (including marketing) which help companies to make profits for their shareholders and not for the improvement of your care in the NHS.
This post is based on emails circulated to the Sheffield SSONHS mailing list. NB So far the GPs we know of seem happy to provide further information and answer questions at their Patient Participation Groups (and possibly by other means as well). Those with websites may well have their own opt out forms which can be downloaded.
What’s the issue?
If we want our NHS to work well and for treatment to be based on the best possible evidence, then we need performance reporting and research: both of these have to be based on data. However the collection of data is normally based on a series of protocols which generally include explicit consent of the subjects, especially if the data is both confidential and identifiable.
The NHS has collected a lot of centralised data including hospital care for some time. Since 2010 it has also centralised Summary Care Records for over 32 million people. These enable remote access for NHS staff to important information about patients, namely any medicines you are taking, allergies you suffer from and any bad reactions to medicines that you have had. These are currently being viewed at a rate of 12000 per week, mainly by acute hospital pharmacy staff, but also in emergency care centres and prisons. In 2010 patients were offered the chance to opt out of having Summary Care Records created and about half a million people did opt out. If you did not opt out then, you cannot opt out now – your SCR is in the system.
Now the NHS wants to go further and put most of your GP record into its centralised system. The data will be handled by the Health and Social Care Information Centre (HSCIC) which has enhanced responsibilities under the Health and Social Care Act 2012 to reduce the burden on frontline services by acting as a 'gateway' to bodies seeking to collect data.
'Sensitive’ codes such as sexual health records, pregnancy termination, IVF, marital status, complaints, convictions, and abuse, will not be extracted as part of the care data process, but all other codes, including diagnostic codes, investigation results and information about prescriptions, will be. This could include prescription items that reveal sensitive data, such as medication for HIV or chlamydia, or hormonal treatment for infertility.
The problem is that this data will not be fully anonymised. First of all the records are uploaded from your GP's system in identifiable form before key identifiers are removed to pseudonymise the data so that it remains as an integral record but without an immediately obvious real identity. This is the data which will be most widely shared across the NHS system. However in special circumstances researchers may want access to personal confidential data. This has to be for work in the interest of NHS patients and requires special permission but not from the individual concerned who is already presumed to have consented if their care data has been uploaded. There were 31 permissions granted for the release of identifiable data between April and December 2013 according to Pulse magazine for GPs.
Civil liberty campaigners have for a long time been concerned that as public service databases develop in scope and sophistication, the temptation to join them together for the purposes of government 'efficiency' becomes ever greater, the more so when certain failures of care turn out to be partly due to the right information not having been passed between agencies. On the other hand the unification of databases hugely increases the number of people of different sorts who may have access to personal information about citizens. We already know from the Snowden revelations how much electronic information and traffic is collected by the security services. Now personal medical records can potentially be included.
The possibility of your records being identifiable are first of all if they are intercepted or misrouted before pseudonymisation takes place; secondly after pseudonymisation as it has to be possible for people with administrative access to the system to trace back to the original dataset; and finally if your fully confidential details are passed on to researchers who may be within the NHS, academia, the charity sector, or even in the private sector (see below).
Why does the NHS want to do this?
Some of the reasons are explained in the leaflet and you can get more information from the official website. Some people (including a lot of medical research charities) argue the formation of this databank is a good thing because it will aid NHS planning, auditing and research into health needs.
What's the objection?
The main objection is that it is a betrayal of the confidentiality which patients expect from their doctors, using information which has in the past been given confidentially but will now be much more widely accessible without full anonymisation. See for example Medical Confidentiality and Why I have opted out. For an informed discussion of the dilemma see the Dianthus medical blog.
What will the data be used for?
The Health Care Information System explains its data use and linkage system here. This is where it gives examples of how data is used and who by (including the private sector), and outlines some of the protections. The NHS has promised that the data cannot be used for the purposes of assessing insurance.
How has the NHS handled the proposal?
The NHS has done a pretty poor job and has basically hoped that people would consent by default. WE have to opt out, not to opt in. There has been little or no attempt to engage patient organisations that we are aware of. First of all it tried to put all the burden of informing public and patients onto GPs (as if they were not busy enough already) even threatening them with prosecution if they failed to do so. Then it finally agreed to the national leaflet. And all along it has basically tried to use the formula 'We are your beloved NHS, Trust Us', without realising that what the government has done to the NHS renders it anything but trustworthy.
What should I do?
Well you could have objections in principle - either about the wider dissemination of your data itself or about it being passed in some form or another through myriad hands, including those seeking to profit from involvement with health care. Or you might feel that your data could be used against you in some way. Or you might just feel more insecure about talking to your GP at all. You might want to take a general stance against the creeping data-richness of the state. If so Opt Out before March. Probably the only way to move towards fuller anonymisation will be if sufficient people opt out and this is the action recommended by Keep Our NHS Public (see their leaflet and briefing paper.
On the other hand you could feel that all these risks are pretty hypothetical/negligible, or that you don't have anything to hide, or that having a wider pool of medical histories will be of public benefit in terms of developing treatments and that it in the long run this will help the NHS to plan its facilities more effectively. (One argument in favour of the data centralisation is that it will help improve clinical performance, whereas there is little or no available information about clinical performance in relation to sexual health because confidentiality is much tighter.)
How do I opt out?
To get an opt out form, contact your GP, look on their website or use a form designed by Dr Neil Bhatia who has an informative website http://www.care-data.info/. There is also a slightly briefer version.
Please note that there are apparently 2 levels of opt out each with a code. These are mentioned in the letter section of the form.
9Nu4 is an opt out which is a dissent from any disclosure of personal confidential information.
9Nu0 is the complete opt out from having your data passed on.
You might decide only to opt out from having your identifiable personal records passed on, and if so, ask for code 9Nu4 to be entered in your records. If you want to opt out completely then ask for both codes to be included as it says on the form.
If you go to your practice to opt out, make sure that you don't get given a form for opting out of the Summary Care Record which gives details of prescriptions, allergies etc. This will have no effect. On the other hand, if you opt out of care data centralisation now, you can always opt in at a later date. The uploading will be a continuous process, probably on a monthly basis. If you decide to opt out only at a later stage, future data won't be uploaded but the initial uploads will remain on the system.
During January households in England should have received a leaflet from NHS England outlining its expansion of centralised care data records by uploading everyone’s GP records into a centralised data bank. Of course if you have opted out of receiving junk mail, you won’t have got it? Or it may have got included in a bundle of commercial junk mail which you immediately recycled. Maybe you looked at it and thought what has this got to do with me and ignored it? Maybe you read it but didn’t fully understand what it was about? Or maybe you are part of a small minority of the population who read it and took a conscious decision either to permit your data to be used in this way or to opt out by contacting your GP surgery.
Details about how to opt out including a link to a form are at the end of this post.
There are good arguments for both decisions and it is one for individuals to take. The well known academic and campaigner Alyson Pollock illustrates the difficulty when she calls for opting in to data centralisation but out of data being sold. So why is it a matter for organisations which seek to defend the NHS? Why are organisations like Keep Our NHS Public calling for mass opt outs? After all, this initiative comes from the NHS.
The reason is firstly that the way this scheme has come about is a direct result of the 2012 Health and Social Care Act; secondly that the way it is being implemented (including the dreadful information campaign) is partly because of the NHS structure imposed by the Act; thirdly that it ignores the principle of explicit consent, and fourthly that the fragmentation of the NHS means that data is far more accessible to outsiders including companies which want to use it for profit. Even if the data cannot be shared for the purposes of calculating insurance, the more data which is available in any form to private sector companies with or without NHS contracts, the greater the possibility that it will be used for purposes (including marketing) which help companies to make profits for their shareholders and not for the improvement of your care in the NHS.
This post is based on emails circulated to the Sheffield SSONHS mailing list. NB So far the GPs we know of seem happy to provide further information and answer questions at their Patient Participation Groups (and possibly by other means as well). Those with websites may well have their own opt out forms which can be downloaded.
What’s the issue?
If we want our NHS to work well and for treatment to be based on the best possible evidence, then we need performance reporting and research: both of these have to be based on data. However the collection of data is normally based on a series of protocols which generally include explicit consent of the subjects, especially if the data is both confidential and identifiable.
The NHS has collected a lot of centralised data including hospital care for some time. Since 2010 it has also centralised Summary Care Records for over 32 million people. These enable remote access for NHS staff to important information about patients, namely any medicines you are taking, allergies you suffer from and any bad reactions to medicines that you have had. These are currently being viewed at a rate of 12000 per week, mainly by acute hospital pharmacy staff, but also in emergency care centres and prisons. In 2010 patients were offered the chance to opt out of having Summary Care Records created and about half a million people did opt out. If you did not opt out then, you cannot opt out now – your SCR is in the system.
Now the NHS wants to go further and put most of your GP record into its centralised system. The data will be handled by the Health and Social Care Information Centre (HSCIC) which has enhanced responsibilities under the Health and Social Care Act 2012 to reduce the burden on frontline services by acting as a 'gateway' to bodies seeking to collect data.
'Sensitive’ codes such as sexual health records, pregnancy termination, IVF, marital status, complaints, convictions, and abuse, will not be extracted as part of the care data process, but all other codes, including diagnostic codes, investigation results and information about prescriptions, will be. This could include prescription items that reveal sensitive data, such as medication for HIV or chlamydia, or hormonal treatment for infertility.
The problem is that this data will not be fully anonymised. First of all the records are uploaded from your GP's system in identifiable form before key identifiers are removed to pseudonymise the data so that it remains as an integral record but without an immediately obvious real identity. This is the data which will be most widely shared across the NHS system. However in special circumstances researchers may want access to personal confidential data. This has to be for work in the interest of NHS patients and requires special permission but not from the individual concerned who is already presumed to have consented if their care data has been uploaded. There were 31 permissions granted for the release of identifiable data between April and December 2013 according to Pulse magazine for GPs.
Civil liberty campaigners have for a long time been concerned that as public service databases develop in scope and sophistication, the temptation to join them together for the purposes of government 'efficiency' becomes ever greater, the more so when certain failures of care turn out to be partly due to the right information not having been passed between agencies. On the other hand the unification of databases hugely increases the number of people of different sorts who may have access to personal information about citizens. We already know from the Snowden revelations how much electronic information and traffic is collected by the security services. Now personal medical records can potentially be included.
The possibility of your records being identifiable are first of all if they are intercepted or misrouted before pseudonymisation takes place; secondly after pseudonymisation as it has to be possible for people with administrative access to the system to trace back to the original dataset; and finally if your fully confidential details are passed on to researchers who may be within the NHS, academia, the charity sector, or even in the private sector (see below).
Why does the NHS want to do this?
Some of the reasons are explained in the leaflet and you can get more information from the official website. Some people (including a lot of medical research charities) argue the formation of this databank is a good thing because it will aid NHS planning, auditing and research into health needs.
What's the objection?
The main objection is that it is a betrayal of the confidentiality which patients expect from their doctors, using information which has in the past been given confidentially but will now be much more widely accessible without full anonymisation. See for example Medical Confidentiality and Why I have opted out. For an informed discussion of the dilemma see the Dianthus medical blog.
What will the data be used for?
The Health Care Information System explains its data use and linkage system here. This is where it gives examples of how data is used and who by (including the private sector), and outlines some of the protections. The NHS has promised that the data cannot be used for the purposes of assessing insurance.
How has the NHS handled the proposal?
The NHS has done a pretty poor job and has basically hoped that people would consent by default. WE have to opt out, not to opt in. There has been little or no attempt to engage patient organisations that we are aware of. First of all it tried to put all the burden of informing public and patients onto GPs (as if they were not busy enough already) even threatening them with prosecution if they failed to do so. Then it finally agreed to the national leaflet. And all along it has basically tried to use the formula 'We are your beloved NHS, Trust Us', without realising that what the government has done to the NHS renders it anything but trustworthy.
What should I do?
Well you could have objections in principle - either about the wider dissemination of your data itself or about it being passed in some form or another through myriad hands, including those seeking to profit from involvement with health care. Or you might feel that your data could be used against you in some way. Or you might just feel more insecure about talking to your GP at all. You might want to take a general stance against the creeping data-richness of the state. If so Opt Out before March. Probably the only way to move towards fuller anonymisation will be if sufficient people opt out and this is the action recommended by Keep Our NHS Public (see their leaflet and briefing paper.
On the other hand you could feel that all these risks are pretty hypothetical/negligible, or that you don't have anything to hide, or that having a wider pool of medical histories will be of public benefit in terms of developing treatments and that it in the long run this will help the NHS to plan its facilities more effectively. (One argument in favour of the data centralisation is that it will help improve clinical performance, whereas there is little or no available information about clinical performance in relation to sexual health because confidentiality is much tighter.)
How do I opt out?
To get an opt out form, contact your GP, look on their website or use a form designed by Dr Neil Bhatia who has an informative website http://www.care-data.info/. There is also a slightly briefer version.
Please note that there are apparently 2 levels of opt out each with a code. These are mentioned in the letter section of the form.
9Nu4 is an opt out which is a dissent from any disclosure of personal confidential information.
9Nu0 is the complete opt out from having your data passed on.
You might decide only to opt out from having your identifiable personal records passed on, and if so, ask for code 9Nu4 to be entered in your records. If you want to opt out completely then ask for both codes to be included as it says on the form.
If you go to your practice to opt out, make sure that you don't get given a form for opting out of the Summary Care Record which gives details of prescriptions, allergies etc. This will have no effect. On the other hand, if you opt out of care data centralisation now, you can always opt in at a later date. The uploading will be a continuous process, probably on a monthly basis. If you decide to opt out only at a later stage, future data won't be uploaded but the initial uploads will remain on the system.