Comment by Dave

January 15, 2007 @ 17:44

Just thought you might want to have a look at this. It seems pharmacists are still pushing hard to have access to the Electronic Records. As if having records ‘data raped’ was not bad enough, it seems even pharmacists want to join the list of people that like the idea of ‘data rape’.
http://www.ehiprimarycare.com/news/item.cfm?ID=2414

There is also an article at http://www.ehiprimarycare.com/news/item.cfm?ID=2401 that shows that there is not a need for the spine. If data can be shared this way (there is no reason why they can not be sent to hospitals when there is a need), why spend billions on the spine?

Comment by Jon

January 18, 2007 @ 13:33

This has been the last straw that has persuaded me I need to join liberty – and I did this morning. Find out more at http://www.liberty-human-rights.org.uk/

Also, I work at a university (staff) and I’d like to put up posters and leaflets etc. promoting this cause, do you have any recommendations?

Comment by Dave

January 19, 2007 @ 13:58

You could ask to use the flier they have on this web site (http://www.nhsconfidentiality.org/wp-content/uploads/tboo-surgerylet.pdf).

I am looking into starting my own blog thing so that people can get copies of the emails I have had from CfH, NHS and others. I am planning on doing a few other things on it, such raise questions about why nurses at ashtma clinics are being allowed to know patients have been raped/abused, had sexual problems, emotional probles, STDs/STIs and everything else even where this is not relevant (if it is a case of it might be relevant then why is it not passed on to consuiltants when you are reefered to them?). One practice manager from the Bucksburn area of Aberdeen implied it was being shared out of convienience rather than a ‘need to know’. In othere words, the nurse does not ‘need to know’ you were raped/abused, had sexual problems ect, but she/he will be allowed to know out of convenience.

I am also hoping that someone will be able to say why patients are not allowed to restrict access to records by admin staff despite the GMC and NHS codes of practice saying patients can deny access. If anyone can explain why patients are not allowed to tell their GP something without nit being shared with every doctor/nurse and a fair chunk of the admin staff, would love to know.

Comment by Jon

January 24, 2007 @ 12:22

I’ve been told (by a senior GP) that official advice at the moment is that Dr’s can add 93C3 read codes all they want, but they will be ignored. Is this true? How can we combat this?

This has no doubt put some Dr’s off leaving out the leaflets.

Jon

Comment by A GP

January 25, 2007 @ 14:36

from PULSE (a magazine for GPs) 25.01.2007

GPs could face prosecution under the Data Protection Act if they fail to stop the upload of records to the spine when patients have requested it.

The legal threat would come if GPs’ IT systems failed to recognise a code in the record indicating the patient’s objection, according to Dr Paul Cundy. Dr Cundy, co-chair of the joint GPC/RCGP IT committee, raised the issue following news that using the 93C3 Read Code would not automatically opt patients out of the NHS Care Record (News, 18 January). Dr Cundy said: ‘If a patient contacts a GP and says “I don’t want my data uploaded” and the GP makes a record of this and then fails to stop that upload, that’s breaching the act.’ Dr Cundy said EMIS, InPractice Systems and Microtest systems all recognised the code as a trigger to opt out and he expected other providers to follow suit: ‘It would not be sensible for an opt out blocking mechanism not to recognise Read Code data.’ Dr Nick Clements, medico-legal adviser at the Medical Protection Society. said patients could complain through the NHS complaints procedure or under the Data Protection Act. But, he added: ‘If GPs have lodged the objection using a Read Code, they can simply search their records.’

Comment by A GP

January 25, 2007 @ 14:39

from PULSE (a magazine for GPs) 25.01.2007
(letters section)

From Dr Paul Cundy, co-chair of joint IT committee, GPC/RCGP

In your article ‘Code warning over care record’ (News, 18 January) you make the point that entering the 93C3 Read Code in a patient’s records may not stop any future uploading to the spine. There is a further but more critical point that should be brought to the attention of all GPs.

If a patient requests that no data should be uploaded then the GP is legally bound by the Data Protection Act to adhere to that request: the GP is the data controller and they will have had a competent instruction from the data subject (the patient). This requirement must be adhered to no matter what the upload process. It follows that if the GP has entered a 93C3 code in the patient’s records to attest and document the request, he would have no defence whatsoever if the records were subsequently uploaded. Whether or not the upload blocking technology works with the 93C3 code, those records must not be uploaded unless and until the patient changes their mind. This view has been confirmed by the GPC lawyer. It is with this in mind that I am hopeful that GP systems suppliers will be implementing a ‘93C3 block’ that operates independently of any CfH specified process.

Comment by Neil

January 25, 2007 @ 16:43

from today’s PULSE (a magazine for GPs) 25.01.07

(from letters section)
From Dr Paul Cundy, co-chair of joint IT committee, GPC/RCGP

In your article ‘Code warning over care record’ (News, 18 January) you make the point that entering the 93C3 Read Code in a patient’s records may not stop any future uploading to the spine. There is a further but more critical point that should be brought to the attention of all GPs.

If a patient requests that no data should be uploaded then the GP is legally bound by the Data Protection Act to adhere to that request: the GP is the data controller and they will have had a competent instruction from the data subject (the patient). This requirement must be adhered to no matter what the upload process. It follows that if the GP has entered a 93C3 code in the patient’s records to attest and document the request, he would have no defence whatsoever if the records were subsequently uploaded. Whether or not the upload blocking technology works with the 93C3 code, those records must not be uploaded unless and until the patient changes their mind. This view has been confirmed by the GPC lawyer. It is with this in mind that I am hopeful that GP systems suppliers will be implementing a ‘93C3 block’ that operates independently of any CfH specified process.

GPs are split over the merits of the planned NHS Summary Care Record, a survey suggests.

Only 4 per cent of GPs responding to an online survey by Onmedica thought patients accessing records electronically would improve care. Some 27 per cent believed it would improve care but security needed to be robust. One in 10 of the 400 GPs questioned said they would be happy for the Care Record to proceed provided patients were given the opportunity to opt out. But more than one in five (21 per cent) said they did not consider allowing electronic access to records a safe option and it should not be pursued under any circumstances. A total of 38 per cent said they would need more details before making a decision Dr John Parry, clinical director of GP systems supplier The Phoenix Partnership and a GP in Keighley, West Yorkshire, suspected GPs would be asked to promote the Care Record. He said: ‘Tony Blair wants GPs to be more involved in promoting NHS changes. Reading between the lines, I’d think this is one of the things to get involved with.’ Dr Trefor Roscoe, a GP in Sheffield and GPC member, said GPs should refuse to upload records, even if they were offered money for the work. He said: ‘I think there’s serious conflict between various bits of legislation. This is going to be something that causes much public disquiet.’ Dr Roscoe added: ‘I don’t think it’s accurate enough – there are all sorts of things on there. Breaches are more likely the more data subjects you have.’

GPs could face prosecution under the Data Protection Act if they fail to stop the upload of records to the spine when patients have requested it.

The legal threat would come if GPs’ IT systems failed to recognise a code in the record indicating the patient’s objection, according to Dr Paul Cundy. Dr Cundy, co-chair of the joint GPC/RCGP IT committee, raised the issue following news that using the 93C3 Read Code would not automatically opt patients out of the NHS Care Record (News, 18 January). Dr Cundy said: ‘If a patient contacts a GP and says “I don’t want my data uploaded” and the GP makes a record of this and then fails to stop that upload, that’s breaching the act.’ Dr Cundy said EMIS, InPractice Systems and Microtest systems all recognised the code as a trigger to opt out and he expected other providers to follow suit: ‘It would not be sensible for an opt out blocking mechanism not to recognise Read Code data.’ Dr Nick Clements, medico-legal adviser at the Medical Protection Society. said patients could complain through the NHS complaints procedure or under the Data Protection Act. But, he added: ‘If GPs have lodged the objection using a Read Code, they can simply search their records.’

Comment by Hope

January 26, 2007 @ 12:06

hi

can I send just one letter with our whole family on including children?

and at what age would they have to send/sign their own?

Comment by Jon

January 27, 2007 @ 19:00

Hi,

From ZDNet

Anger over EC medical data-sharing scheme

The European Commission is about to call for proposals on how patients’ medical details would be shared between its member states, with the UK almost certain to be included in the scheme.

Anyone worried?

Comment by Kathy Haq (RGN)

January 29, 2007 @ 11:43

I most certainly do not want my medical records put on to this NHS Spine. I have recently been involved in a case and DoH Inquiry (Kerr/Haslam) where many ladies, once given access to their Medical Records, found that lies had been written in them by both Kerr and continued by some G.P’s. It was only because of the Criminal and Civil Trials as well as the Inquiry that we were allowed to see what had been written by these doctors, many years ago.

Although I accept that these are rare situations, it is still unfair to patients that these records are available to be seen by God knows who, in the future. Certainly many of the ladies involved now realise why subsequent G.P’s treated them in certain ways, after having read what was in their records. Most of these ladies had mental health problems and were abused by their Psychiatrists. The lies were obviously to cover themselves if they were ever to be found out. These ladies are unable to have these things removed from their Medical Records.

Do we really want our most intimate health details to be viewed by every Tom, Dick and Harry in the NHS and even beyond. I am a Registered Nurse and I certainly do not want this to happen to me.

Comment by Dave

January 29, 2007 @ 12:18

Personally I dont think it matters if the GP puts the code in or not. The vast majority of GPs I have come accross really do not care about respectng the wishes of patients or following GMC/NHS codes of practice. I for one dont think they will care much for the DPA, especially as the ICO have made it clear the GP can store data wherever and however they like, regardless of what the patient says.

With NHS trust and the GMC already turning a blind eye to GPs that are failing to inform patients about data sharing, who are sharing data without consent, sharing data where the patient has said no and refusing access to health care (including life saving treatment) unless the patient agrees to share it with NHS managers, administrators, every doctor/nurse they see for the rest of their life and letting admin staff access data simply because they can not be bothered with patient rights/privacy/dignity I think we are all screwed as doctors/nurses are to busy looking after their own interest than protecting patient data.

Comment by Jon

January 29, 2007 @ 13:45

From The Register

Patients can boycott NHS system, says commissioner
The Information Commissioner has been told that patients will have the opportunity to refuse to have their details uploaded onto the new NHS medical records system. The news comes just weeks after the Department of Health refused patients that right.

Regarding GPs not caring, I know this isn’t the case for all GPs. If you don’t like the attitude of your GP, then change GPs. If you live within the catchment area of a surgery then they cannot refuse you unless they have a closed list (which is rare). Dr’s and nurses do care very much about patients and their rights, but their time is eroded by bureaucratic paperwork (such as the choose and book system). The GMC and BMA are also currently against the CfH system.
My GP and the GPs I know (quite a few) are very much against this data rape, and are fully aware that it solves no real problem. In fact it has caused them more problems when the connections to the data centre go down.

Doctors and nurses do a very hard job under a lot of pressure, and I don’t think we should slur them in this campaign. Full disclosure: I am a Dr, but not a medical one. I’m a computer scientist.

Comment by Jon

January 29, 2007 @ 13:47

Re: Comment by Hope

I think you’d have to do one for each member, and parents can sign for under 16s. Each adult would definitely have to send their own. Anyone know any different?

Comment by helen

January 29, 2007 @ 16:43

Yes you can sign on behaver of your children if they are under 16 years of age.

Helen Wilkinson

The Big Opt Out

Comment by Dave

January 29, 2007 @ 18:20

I changed practices and now have a GP that does not just ignore the patients wishes. That is 1 out of about 45. Some have even threatend to share data where it causes harm to the patient and claimed they can harm the patient if they want even though not causing harm would not cause anyone else harm. They have even gone as far as to claim I have no right to restict access, even though the GMC, BMA, NHS and a Clinical Governance Practitioner all say I do have the right.

I said what I did becuae it highlights that there are those that work in the health profession that think that being a doctor/nurse or working for the NHS allows them to do what ever they want. In my area you can be refused treatment for things like rape, abuse, sexual problems, alcohol/drug issue, emotional problems and anything else unless you consent to every doctor/nurse and even a lot of admin staff knowing about it, even though the GMC says that this is not allowed.

If your current GP/nurse can refuse to provide treatment or even withdraw it if you refuse to allow them access to information (the GMC has made it clear you can tell your GP something without others knowing what it is) then what is to stop them accessing everything on the spine by claiming it might be relevant.

Patient privacy has been going down the pan for years (remember Section Sixty? Employeres are being allowed to ask for more information and our info is becoming more available to more people). To date, all the health profession is done is say that it’s wrong but let it happen anyway. Why would the spine be any different? The BMA already know that there is no alternitive for GPs yet they are calling for GPs to avoid the spine. How do they expect that to happen when patients will not be capable of getting things like blood test, operations or access to counciling if the data does not go via the spine?

Doctor/nurses ether vbelieve in patient privacy or they do not. The vast majority I have come across think they can do what ever they want and think patient privacy is unthinkable.

Comment by Neil

February 15, 2007 @ 12:47

from Pulse Magazine (for GPs) 15.02.07:

U-turn on data opt-out code

A Read code will be used to block the upload of opted-out patients’ records to the spine.

In a U-turn, Connecting for Health is recommending to a meeting of the Summary Record Advisory Group that the 93C3 code should be adopted for use where patients do not want records to be uploaded. A message indicating the patient has opted out will be transmitted to the spine. Dr Gillian Braunold, GP clinical lead for Connecting for Health, said the code should be used in order to avoid confusion over whether patients had refused consent or not. ‘We’ve made a very strong argument for having that,’ she said. Previously, Connecting for Health had wanted the code to be simply a prompt for GPs rather than the mechanism to prevent information upload.

Dr Paul Cundy, GPC IT subcommittee chair and a GP in Wimbledon, south London, said it was a victory which moved the GPC’s campaign for an opt-in system a step closer. He said: ‘The patient has the opt-out options they should have. It’s not yet an opt-in but we’re getting closer.’ Dr Cundy said it was unclear whether 93C3 would work when the full care record was up and running because GPs would not be the only ones contributing. But he added that software suppliers ‘would be in a very tricky position if they supplied systems which did not allow GPs to comply with the Data Protection Act’.

Dr Mike Robinson, medical director at Inpractice Systems (INPS), one of the suppliers, said the summary Care Record pilot project team had agreed that INPS could choose to implement a check for the code in the patient record. ‘If we find this code, then no patient data will be uploaded, and a blank summary will be sent,’ he said.

Comment by Dave

February 15, 2007 @ 18:01

It is good to see patients will be allowed to have the code put in their records, but who will tell the patients which code to ask for? Is it a case of the patient says no and the GP puts in the code?

I think saying an opt-in is a step closser is going a bit far.

There is also the question of future care. What happenes when the patient is refered to a hospital, has blood test, seen their GP/nurse or been in hospital? Will the code be put in? If so, how will the doctors/hospitals get the info? What about visits to the GUM clinic.? Will they need to put the code in? CfH have already said such things must be done via NCRS, so does that mean it can go via NCRS without it going on the spine or a national database?

Comment by Neil

February 19, 2007 @ 14:45

E-Health Insider 19.02.07

Call to use Spine to find drug trial patients

19 Feb 2007

The BioIndustry Association has expressed an interest in tapping into the NHS’s Spine database and using patient information to identify potentially willing drug test subjects.

Speaking to the Scotsman, the association’s chief executive, Aisling Burnand said: “The UK has a real opportunity because the NHS’s patient records make this a unique place in the world to study clinical trends. We are not there yet, but that is the vision.”

A BioIndustry Association spokesperson told E-Health Insider that Burnand was responding to suggestions made in the Cooksey Review into UK health research funding last December, and that other research organisations would hold similar interests.

In his foreword to the review, Sir David Cooksey, said: “The potential offered by the new ‘Connecting for Health’ IT database which will contain the medical records of the 8m inhabitants of England and should be accessible (with strong patient confidentiality safeguards) for important research, including clinical trials and subsequent pharmaco-vigilance studies of newly released drugs.”

…

Comment by Felicity

February 25, 2007 @ 23:07

I was concerned by a line in an NHS reply to my opt-out letter so I wrote again, asking if citizens with and without Care Records would, in future, receive the same quality of care.

This resulted in a protracted correspondence in which my question was repeatedly ignored.

Eventually I got the following response:

” .. inevitably, those people who choose not to have a care record on the spine will lose the benefits that the record will provide, including the likelihood of swifter appropriate treatment, greater convenience, direct access to personal health information and easier shared participation in care decisions …”

So, that’s a “no” then.

Comment by Neil

February 27, 2007 @ 17:02

from E-Health Insider:

Summary care records planned for end of 2008

27 Feb 2007

Connecting for Health is planning for every patient in England to have a complete Summary Care Record by the end of 2008.

Guidance prepared by CfH for strategic health authorities makes it clear that the Clinical Summary Record will be implemented in two phases. Phase one, due to begin by Easter, will consist of an early adopter implementation of the GP part of the summary care record (SCR). Phase two, to be complete by the end of 2008, will use the findings of the early adopter phase for a full roll-out across England of the SCR by the end of 2008.

The guidance sets out in detail how the implied consent model for the early adopter sites will work and patients’ options for withholding consent. If patients do not opt-out an initial text based summary of their medications, allergies and adverse reactions will be uploaded to the spine. If patients choose to dissent from data sharing, a patient’s summary record will be restricted to the authoring GP only.

…

Comment by Neil

February 27, 2007 @ 22:30

from E-Health Insider:

In the first of a two-part interview, BMA chairman, James Johnson, tells Joe Fernandez why patients will decide ultimately the National Programme for IT’s fate.

Patients must exercise their right to choice and decide if they want their records fully uploaded onto the spine, BMA chairman, James Johnson, has told E-Health Insider in an exclusive interview.

The BMA wanted the government to create an opt-in system, as opposed to the opt-out system that is being delivered, and now Mr Johnson is calling on patients to make their opinions known once pilots of the project begin in six primary care trusts.

“The opt-in/opt-out argument proved difficult and controversial and so we hope the pilots appear to be not so controversial. What patients need to understand is that sensitive data going in is very minimal. At this stage the only clinical data being entered is current prescriptions a patient is receiving and any known allergies.

“The bottom line is that this is an opt-out system and we wanted an opt-in system. These pilots will give patients a defined period of time to go to their GPs and view either their electronic records or their paper records and see what will be loaded onto the spine. If they don’t want data to go up, then they can ask for it not to be stored and it will not go up at all. Patients voicing their opinions is pretty crucial.”

…

The BMA’s policy is that explicit consent should be obtained before any healthcare information is uploaded onto the spine…

…plans for ‘sealed envelopes’ to restrict sharing of such data would not be in place for the pilots and are not likely to become available until 2008/9…

Comment by Neil

March 3, 2007 @ 09:55

from Daily Mail 03.03.07:

Could people power force Labour to axe the NHS database?

By Kirsty Walker Political Correspondent

A MASSIVE public revolt threatens to derail Labour’s plans to store patients’ medical records on a Big Brotherstyle database.

Tens of thousands of patients have already demanded that highly-personal details are excluded from the controversial Health Service scheme.

Critics believe the growing rebellion could eventually force ministers to abandon the idea.

A similar health IT project in Iceland was dropped last year after 11 per cent of the population objected.

Campaigners here hope to achieve the same result by persuading patients to use their little-known right to opt out of the database.

Already 75,000 have demanded the removal of their personal details from the system – but to achieve 11 per cent around 6.5million would need to sign up.

The mighty display of ‘people power’ is another blow to the NHS’s crisis-hit £20billion computer programme.

One of its central planks is a database called‘Spine which will eventually store around 50million patient records. NHS staff anywhere in the country will be able to access these details.

Five primary care trusts will start piloting the scheme this year, with a national launch set for late 2008.

Patients were initially told they would have no choice over whether their medical information would be stored online. But ministers were recently forced to perform a U-turn amid concerns over privacy and security.

Instead, patients will be able to opt out after viewing their proposed record online or by asking their GP for a copy.

But if they fail to do so within a certain time limit, they will be deemed to have given consent and their records will be automatically stored.

NHS manager Helen Wilkinson, who is masterminding the Big Opt Out campaign, said she was already receiving around 100 calls a day from patients who fear sensitive information such as drug or alcohol abuse or a sexuallytransmitted disease could fall into the wrong hands.

More than 60 per cent of GPs are concerned the system would be vulnerable to hackers and unauthorised access by public officials from outside the NHS and social care.

Miss Wilkinson launched the campaign in November after discovering she had been wrongly labelled an alcoholic after she saw a consultant about routine surgery.

The error was put on her file by a clerk.

She has now forced the Health Department to wipe all her records, including basic identification and medical details, from NHS files, meaning in her case she wouldn’t be allowed treatment on the NHS.

She said: ‘There are lots of people out there who are still scared of IT. The Government hasn’t even started the pilots of Spine yet thousands have already written to their GPs asking to opt out.

‘My main concern, as an NHS manager, is that millions of patients are unaware that this is going to happen.

‘People are very worried that their information could end up in the wrong hands.’

Miss Wilkinson also warned that although patients can opt out of their medical records being shared, they will in general be unable to stop their demographic details – such as name, address, NHS number, GP details and phone numbers – being stored on Spine.

The Daily Mail has been contacted by a growing number of readers and doctors concerned about Labour’s plans. Yet the DoH insists there are huge benefits in having instant access to everybody’s records on a single database.

The idea is that doctors will be able to retrieve a patient’s details, even if they need treatment away from home.

Ministers also claim it will end the problem of missing records, currently stored on paper.

Last night former home secretary Charles Clarke told Channel 4’s The Insider: ‘The most personal of all the official files held about us are our medical records. Prying eyes could uncover information that could be used to threaten a career or a relationship.

‘But instant access to this same information, through a computerised national database, could also save your life.’

To contact the campaign go to http://www.thebigoptout.org or call 01494 882458.

k.walker@dailymail.co.uk