The Big Question: Should we fear plans to put medical records on a national database?

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Indy Lifestyle Online

Why does the question arise now?

Every patient in Britain has an individual medical record with details of their medical condition and the treatment they have received, either on computer or in paper form at their GP's surgery. The Government announced yesterday that it is pressing ahead with its controversial plans for a national computerised medical record system.

The proposal is part of its 10-year, £20bn upgrade of NHS computer systems and is aimed at improving care, ministers said. Ultimately the aim is that the medical record should be uploaded to a central computer "spine", where it could be accessed by doctors and nurses anywhere at any time who needed to treat the patient.

Why is this being done?

Doctors need to know what conditions a patient has, what drugs they are being treated with and what allergies they suffer from in order to treat them safely. Elderly, frail and vulnerable patients may have difficulty remembering the details, especially when they are taking many different drugs.

In emergencies, there may be delays while doctors contact GPs for patient details or attempt to get a history from the patient before starting treatment. Lord Warner, health minister, yesterday gave the example of an elderly person whose son or daughter calls 999 and says their mother has had a "funny turn". When the ambulance delivers her to hospital the doctors have no idea what is wrong or how to treat her.

What is proposed?

Initially, only a summary record will be uploaded on to the central computer spine for national access by hospitals and GPs. The summary record will contain three sorts of information - medicines currently taken, adverse reactions to medicines, and allergies.

This will mostly be non-sensitive information - for example that a patient has an allergy to penicillin - that people will be happy to share with medical staff, especially as it could be life-saving. But some medicines suggest a diagnosis - anti-depressants, Viagra for impotence, the contraceptive pill, HRT for the menopause - which patients may feel worried about sharing.

Will it be compulsory?

No. Any patient who does not want their summary record uploaded to the central computer spine will be able to opt out. The Government had wanted to make the system compulsory, but has backed down after a national task force established under the patient tsar, Harry Cayton, whose report was published yesterday, argued that the national database must be introduced with "public support and clinical confidence". Patients will also be able to amend their record before it is placed on the national database, and will be able to change their minds in the future.

Are there any risks?

The Government insists that there are no significant risks, because the national database will be security protected to prevent unauthorised access. Every patient will also be able to check their record before it goes on to the national system. All health-care workers registered to have access to the database will have a smart card and access code and will be subject to a duty of confidentiality. Every time someone accesses information on the database, a record will be kept of who it was. Anyone who accesses medical records without good reason may be prosecuted.

But critics say that once records are held on a national computer database, to which tens of thousands of people have access, the "confidentiality" of the information will be weakened. Some information may be valuable to employers, insurance companies or to media organisations - for example that an MP has a sexually transmitted disease - increasing the risk of a breach of confidentiality.

Ministers think these risks have been overplayed. They believe that the interests of the majority of elderly vulnerable patients who have most to gain from the new system are being drowned out by a vocal minority worried about the privacy aspects and the threat to confidentiality. "There are a lot of vulnerable people who stand to lose if we don't go forward with this," Lord Warner said yesterday.

Will patients be consulted about the summary records?

Yes, but it is not clear how. The Government is proposing a public information campaign to inform patients of their rights to opt out. But it has not yet decided whether this will involve writing to each patient individually, dropping leaflets through letterboxes or providing information through surgeries and GPs. Patients will be able to ask to see a copy of their summary record, in a printed version from their GP or on-line, and will be able to amend it or withdraw it on demand. Those who object to their records being held on a computer system of any kind, even one confined to their GP's surgery, will have to prove that it will cause them significant mental distress.

What happens if they don't respond?

They will be deemed to have consented to their summary record being uploaded to the central computer spine by default. This was the issue that divided medical opinion on the task force - some argued patients should be required to opt in to the national database rather than opt out. The task force acknowledged the arguments were finely balanced, but rejected the idea of opting in on the grounds that those most likely to fail to do so were the elderly and vulnerable who were most likely to benefit.

In the future, when the whole medical record is uploaded on to the database, the plan is for patients to be able to place information they regard as sensitive - such as an HIV diagnosis - in a "sealed envelope", a part of the electronic record that will be kept from general view. The contents of the envelope would not be shared without the patient's permission.

Could data be passed on to other agencies?

Yes. Doctors have a legal duty to provide information about patients to public bodies in strictly limited circumstances where wider concerns override their duty of confidentiality. These include reporting the births of children, certain infectious diseases, such as tuberculosis, that put others at risk, and gunshot wounds, in addition to cases where a court orders them to do so.

What happens next?

The Government will invite primary care trusts to bid to pilot the scheme. Lord Warner said yesterday he expected around five primary care trusts, selected from a list of 50, to pioneer the summary care record, beginning in the spring.

Will a central medical records database breach patients' privacy?

Yes...

* Information held by your GP and immediate colleagues will become available to tens of thousands of doctors nationwide

* Some of the information may be valuable to employers or others, and those with access could come under pressure

* The more widely information is shared the greater the risk that confidentiality will be breached

No...

* Patients will be able to withhold their medical records from the national computer spine if they choose

* Patients will be able to check and amend the details on their medical record before it is placed on the central database

* The computer system will be security protected and only registered health-care workers will be able to access it

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