London GPs make it easy for patients to “opt-out” of central NPfIT database

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London GPs make it easy for patients to “opt-out” of central NPfIT database

Tony Collins

London GPs are taking collective action which will make it easier for their patients to "opt-out" of having their medical details uploaded to a central database run by BT as part of the National Programme for IT [NPfIT].

The action is likely to be seen by the Whitehall officials as an attempt to hinder the roll-out of the Summary Care Record to six million patients in London.

If many patients opt out of the scheme, the summary care records database may end up being used little or not at all by thousands of doctors and nurses.

A letter is being sent to GPs by the London-wide group of Local Medical Committees, Londonwide LMCs, a trade association for general practitioners.

It expresses concern about the "very short period" which primary care trusts and NHS Connecting for Health are giving patients to choose whether to opt out of having an central NPfIT "summary care record".

As part of a national roll-out of the summary care record, patients who do not respond to a leaflet from their primary care trusts on the benefits of a central e-record are having some medical details uploaded to a central "spine" database which is run by BT, with Oracle as its subcontractor.

Patients who "opt-out" will have their records kept solely under the control of GPs.

The letter from the Londonwide LMCs says: "Many patients will have worries which they will wish to have addressed, and many may not bother or may ignore the letters [from primary care trusts on the summary care record scheme] and miss their chance to opt out from the start."

Londonwide LMCs are making available online a poster for GP surgeries which gives patients simple advice on opting in or out of the summary care records scheme.

The organisation is also encouraging GPs to "be more proactive and contact patients directly, or via patient participation groups, or via the practice website and text system if you have them".

The letter of the Londonwide LMCs adds that doctors have a duty to ensure that patients make an informed choice. A Londonwide LMCs factsheet for patients quotes the British Medical Association as saying that "patient medical records should not be uploaded without explicit patient/carer consent".

The Department of Health's NHS Connecting for Health, which runs the £12.7bn NHS IT scheme, discourages patients from opting out. Its leaflet warns that patients could endanger their lives by opting out, because key medical information may not be available to doctors when it's needed.

NHS Connecting for Health insists that patients who wish to opt out must sign a disclaimer.

But London GPs are making it easier to opt out. The poster asks: "Do you want your medical records to stay confidential to this practice, or to be uploaded to the NHS central record system, the NHS "spine" ?

If patients are unsure what to do, or want "to be in control" of their health information, they should opt out, in which case, says the poster, "Sign opt-out form at reception".

If patients want, in an emergency, "other healthcare staff" to see what medication they are on and "future health information" they need do nothing, as their data will be uploaded.

One GP said that the poster and other action by the Londonwide LMCs represents a "complete lack of confidence in the Summary Care Record and fundamental confusion and reservation about the ethics of transferring records onto the SCR without the confirmed explicit consent of each patient".

Summary Care Record opt-out - some challenges


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