NPfIT leaflet says national database could save your life

– NPfIT clinical director says opting out of national database of summary care records could be more prejudicial to health than not having a smear test

– GP IT spokesman says leaflet being sent to patients who want to opt out of summary care record is “alarmist”

– More than 250,000 patients may opt-out of summary care records on basis of today’s numbers


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A GP IT spokesman has described as “alarmist” an official warning to patients that they may be risking their lives by opting out of having their medical details uploaded to a national database.

Paul Cundy is critical of an official leaflet being given to patients who opt out of having a national summary care record.

The leaflet has been produced by NHS Connecting for Health, which runs part of the £12.4bn National Programme for IT [NPfIT]. It’s written for patients who have not yet completed and signed a form which formally invokes their right to opt out.

Cundy said: “The suggestion that people might die if they don’t have a summary care record is highly alarmist and inappropriate. The implication [in the leaflet] is that if you don’t have the summary care record you may not save your life.”

Patients who refuse to allow their confidential medical details to be uploaded to the summary care records database – a core part of the NPfIT – are being advised by NHS Connecting for Health that their decision is not risk-free.

The leaflet says that information in the summary care record could “one day be lifesaving”. It adds that the NHS has “significant problems” with lost records and test results, treatment and prescribing errors.

Cundy concedes that the leaflet’s warning about lost records is not an exaggeration. And treatment errors are known problems. He added: “I am not certain that having computer records will solve those problems.”

Patients are advised in the Connecting for Health leaflet that a summary care record would tell doctors and nurses “at a crucial time” what medications are being taken, whether there are any allergies, any adverse reactions to certain drugs or a condition that rules out the taking of certain medicines.

The leaflet says:

“It would be misleading to pretend that there are no risks to information held in the Summary Care Record. But it is also misleading to suggest that not having such a record is risk free”.

Cundy said:

“The number of circumstances where the presence of a summary care record is going to stop someone dying is going to be counted on single figures over the next 20 years.

“Just having a list on a computer of drugs that have been issued is not the same as knowing what the patient is actually taking. That is a perennial problem in general practice where we have had computerised records for 20 years or more.”

When the leaflet was first produced last year doctors made representations to the Department of Health but Cundy is concerned that its wording on the dangers of opting out remains as it was.

Earlier this month [March 2008] the Health Minister responsible for the NPfIT, Ben Bradshaw, said that only about six people in every 1,000 have opted out in trials so far on the summary care record. The government and the Department of Health want 50 million people to have a summary care record. If today’s opt-out rate were to apply nationally, there would be about 250,000 people refusing to have a summary care record.

Gillian Braunold, Clinical Director for the Summary Care Record and HealthSpace, and a GP at Kilburn Park Medical Centre in North West London, denied the leaflet was alarmist. She said it was right to point out to patients that they are putting their health at risk by opting out.

She said:

“That leaflet has been out since 2007… We have worked quite hard to put that guidance on the website before someone opted out of something they may not want to ever revisit … [We wanted to] make sure they [patients] were well informed as to what there is, and what there isn’t, in the summary care record…

“When patients in the early adopter areas ask to not have a summary care record then they get that leaflet …If you choose not to take up a service that the NHS is investing in order to manage risk for patients, to benefit patients, it’s appropriate to point out the risks to patients by not taking part in that service.

“If a woman refuses to have a smear they must sign a disclaimer that it has been explained to them and they don’t want to have a smear… So this is in the same line. The government has decided, and has taken evidence, that it will be beneficial for the majority of patients to have a summary care record. If you don’t want to have one, we must point out to you that you may well find that it could have been of use to you and might well have limited your risks.”

We asked Gillian Braunold whether it was fair to compare a smear test with opting out of a summary care record.

“I think that opting out of a summary care record is much more prejudicial to your health than [opting out] of a smear test.

“My colleagues who are GPs, and are working in out-of-hours, cannot wait for the summary care record in order to start with a baseline of information. It’s much more important for us as clinicians, a smear test, although from a patient’s perspective not having a smear, if they get cancer, they could well regret it. But if you turn up in out-of-hours and you cannot remember what drugs you are on and you are an elderly lady, or you are confused … people can then sometimes give you medicines you have tried before, and you [may] end up in hospital … There is so much evidence to show that people are really vulnerable as they transfer from one care setting to another in the absence of records.”

Officials at the Department of Health say the British Medical Association has made no formal objection to the leaflet. They add that a summary care record could be vital if for any reason a patient could not communicate effectively with those treating them, and could not provide the medical information required in an emergency. Said one official: “Even if it is not a life or death situation a lack of medical information could turn it into one.”

He added:

“David Nicholson [Chief Executive of the NHS] has already claimed that new NHS IT will save 400 lives a year – and that is from reducing adverse drug reactions as a result of changes arising from the Electronic Prescription Service.”

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The Connecting for Health leaflet in full …

“IF I DO NOT HAVE A SUMMARY CARE RECORD

You have decided that you do not want to have a Summary Care Record. The NHS will do its best to provide you with safe, efficient care whether or not you have a Summary Care Record. The purpose of this information sheet is to ensure that you are clear what your decision could mean for your NHS care.

The Summary Care Record’s purpose is to ensure that anyone treating you has basic but important information about you – especially when care is unplanned, urgent or during evenings and weekends. At first this would be limited to your current medications, known allergies and any bad reactions to medicines in the past. When you next see your GP, important information about conditions such as asthma or diabetes could be added if you agreed. Over time, other significant information such as referrals, discharges, and test results will be added.

The information in your Summary Care Record could save you and the NHS time, but could also one day be lifesaving. The NHS has significant problems now with lost records and test results, treatment and prescribing errors.

With a Summary Care Record doctors and nurses would know at a crucial time:

• what medications you are taking, especially if they are many and complex

• what medications have not agreed with you in the past

• whether you have any allergies

• that new medications they prescribe may react badly with things you are already taking

• that you have a condition that means you shouldn’t have certain medicines

In addition, you would have the benefits of:

• 24 hour access to your own Summary Care Record to check it for errors and to see

what those who are treating you have recorded if you chose to view it through

HealthSpace

• peace of mind that wherever in England you needed care, anyone treating you would

have essential information even if you were distressed or didn’t remember details.

And later on, as your Summary Care Record developed, you would be able use it to:

• see your test results as they come in

• check that your referral letters have been written

• remind yourself about important things said to you about your treatment

• inform NHS staff about your needs and how you want to be treated

It would be misleading to pretend that there are no risks to information held in the Summary Care Record. But it is also misleading to suggest that not having such a record is risk free. Substantial work is taking place to modernise the NHS, including the introduction of the Summary Care Record, in order to reduce errors, save lives and NHS Care Records Service improve health outcomes for a great many people.

Modernising and computerising the NHS also brings with it new safeguards to ensure that information in your records is held more securely than in the past.

Risks and protections – Staff disclosing information. The NHS already shares information widely and most NHS staff are honest and trustworthy. There are occasional problems with staff accessing records and disclosing information inappropriately. With the new NHS systems, the number of staff who will have an opportunity to look at your clinical records when they shouldn’t will be greatly reduced. Only staff with special security cards can log onto the new NHS systems. This allows the NHS to track precisely who has done or seen what – and you can ask for this information. Unlike today, staff will have to be involved in your care to access your records and they will only see information appropriate to their role.

Hackers – Safeguards that will protect the Summary Care Record from hackers have

been designed by security experts. They are far stronger than the safeguards in place

anywhere within the NHS today.

Wrong information – It is important that the information about you is accurate. All

data that goes into a Summary Care Record will have to pass quality controls. Once you could access it, you too could check it and point out any remaining errors.

Access by the state – No other part of government would have direct access to your Summary Care Record. As now, any information from your record that the NHS gives to others, such as the police, would be very strictly limited by law. In fact, the

Summary Care Record gives the opportunity to improve things by ensuring that any such disclosures follow consistent procedures and are recorded and monitored.

More control by the patient – The greatest safeguards for your Summary Care Record

are that you will be able to see it yourself, know who else has seen it, and have more

control than ever before over what it contains and who has access. You can ask for it to appear as a blank screen, or ask for information to be removed or not added in the

first place. Later on, additional controls will allow you to let staff see some parts of

your Summary Care Record, but not others.

The first Summary Care Records will ‘go live’ in Spring 2007 in one Primary Care Trust and slowly build from there. We will go cautiously and learn from these ‘Early Adopters’. Yours will, of course, not be created when this happens. We hope that the information provided has made clear the practical results of your decision. Please be assured that the Department of Health is committed to honouring your decision and doing all it can to ensure you get the best healthcare possible. You can, of course, change your mind at any time. We urge you to review your decision from time to time.

If you feel unsure about whether or not to have a Summary Care Record, or would like further information, please make an appointment to discuss it with your GP. NHS Connecting for Health is supporting the NHS to deliver better, safer care by providing linked computer systems.”

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The official form to be completed and signed by anyone opting out of summary care record:

“Request for all clinical data to be withheld from the Summary Care Record.

Part A: to be completed by the individual (data subject) making the request.

Please complete in BLOCK CAPITALS

Title

Surname/family name

Forename(s)

Address

Postcode

Tel no

Date of birth

New NHS No (If known)

UNDER SECTION 10 OF THE DATA PROTECTION ACT I REQUEST THAT MY PERSONAL DATA ARE NOT ADDED TO THE NEW NHS SUMMARY CARE RECORD SERVICE DATABASE. I understand the consequences of taking this action and have carefully considered the implications of this for my health care. I understand that I may change my mind at a future date and can have a summary record created for me if I do. I have

been offered the opportunity to discuss this with my GP.

Signature

Date

Part B: Confirmation of consent (to be completed by a health professional or suitably trained person on behalf of the GP Practice where the individual identified above is registered)

I have discussed with the patient the implications of the above action. I have confirmed that he/she has no further questions and wishes the above action to go ahead.*

The patient does not wish to discuss the implications of the above action. I have given him/her a written explanation of the implications.*

* Delete as appropriate

Signature

Date

Name

Job Title

Request for all clinical data to be withheld from the Summary Care Record.

Please return this form to the GP Practice where you are registered. If you register with a different Practice prior to the new Practice having gone through the process of creating Summary Care Records you will need to complete a new form for the new Practice.”

Links

FOI papers reveal more lessons from Bolton NPfIT trials

Pioneering NHS trust reports “excellent progress” with summary care record – part of the NHS IT programme

Is the NPfIT too politicized?

Introducing the summary care record

Bradford chosen as fifth summary care record pilot

Locking horns over the care record: arch sceptic versus true believer

NHS 23 wiki

Is Whitehall discouraging broadcasters from criticising the NPfIT?

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"If a woman refuses to have a smear they must sign a disclaimer that it has been explained to them and they don’t want to have a smear"

>> I think this is untrue and would be interested to see any authority to support that statement.

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Women do not have to sign a disclaimer if they choose not to have a smear test.

They can fill in a form if they do not want to keep receiving reminders in the post, that's all.

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Perhaps Gillian Braunold would like to explain to the public why not sharing confidential information with SUS and allowing it to be put on a database searchable by the police and others would cause the death of a patient. Perhaps Gillian Braunold could also explain why a clinician, healthcare assistant etc [not knowing] you were on Viagra 5 months ago would kill a patient.

Whilst at it, perhaps the good doctor could also explain why patients are not being informed about all proposed data sharing and access.

You can get round the risk by carrying the same info on you. You cannot do that for a smear test. I would like to see the research the doctor did to prove that a woman not sharing her info via the SCR is more likely to die than a woman that did not have a smear test.

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