Opt out of NPfIT database in person, officials tell patients

Patients who want to opt out of having their health records uploaded to a central database have been told they will need to do so in person.

But the...

Patients who want to opt out of having their health records uploaded to a central database have been told they will need to do so in person.

But the arrangements for opting out of a Summary Care Record under the NHS's £12.7bn National Programme for IT are, for patients, inconsistent and confusing, Computer Weekly has learned.

Depending on where they live, patients can fill out a form online and post it to their GP to opt out of a summary care record. Other patients are being told to make their GP or primary care trust aware of their decision to opt out "in person".

Officials at the Department of Health are discouraging patients from opting out because too many gaps in the central database increases the risk of the summary care record going unused by most doctors and nurses.

But some patients are concerned that their confidential medical details could be available to nosey NHS staff, council officials, hackers and the government.

Stoke on Trent Primary Care Trust has sent a letter to patients which sets out the benefits of a summary care record saying that access to their health information "could be a life saver". It says this is because "crucial information will be immediately available to healthcare staff dealing with you".

Initially the summary care record will initially contain "only details of allergies, recent prescriptions and previous bad reactions to medicines". In future health problems such as a heart attack, diabetes and asthma may be added to the summary care record.

To opt out patients must do so in person. The letter says: "If you do not wish to have a Summary Care Record you will need to make us aware of this choice in person. Please use the contact details below and we will make arrangements for you to do this."

But patients may opt out by completing an online form and posting it to a GP practice where the patient is registered. The form is worded to deter patients from opting out, by warning them of possible harm to their health or treatment.

It says:

• Clinicians treating you may not be aware of your current medications in order to treat you safely and effectively

• Clinicians treating you may not be made aware of current conditions and/or diagnoses leading to a delay or missed opportunity for correct treatment.

• Clinicians may not be aware of any allergies/adverse reactions to medications and may prescribe or administer a drug/treatment with adverse consequences."

Patients are asked to confirm that they have understood the "consequences of taking this action and have carefully considered the implications of this for my health care".

Pulse magazine says that in south Birmingham, which is an early adopter sites for the summary care record, two-thirds of GP practices have now signed up to the care records scheme and letters have been sent to 77,614 patients - of whom 517 have opted out in person.

Dr Grant Ingrams, co-chairman of the British Medical Association's GP IT committee, told Pulse: "For patients worried about privacy anyway the last thing they want is to go and justify that to some official. It's appalling they're going to torture someone basically."

Dr Neil Bhatia, a GP in Yateley in Hampshire who used the Freedom of Information Act to obtain letters being sent by primary care trusts to patients on the summary care record, said: "Connecting for Health seem determined to make it as difficult as possible for patients to opt out."

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