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Furore over Care Records opt-out

Connecting for Health to issue guidance after another week of controversy

Patients will not be able to opt out of having their data uploaded on to the NHS Care Records Service, guidance from Connecting for Health will confirm this week.

But they will be able to stop it being shared once it is on the spine.

Connecting for Health has acted to clarify the position following another week of controversy over the development of the Care Record (see below).

At the heart of the furore was a strongly-worded eight-page letter from the Department of Health to around 1,100 people saying they had no right to opt out of the initial upload, due to happen next year.

The patients had used a proforma letter in the Guardian to state they did not want their data uploaded on the grounds it would cause them 'substantial unwarranted distress'.

But the department refused, arguing the reasons given were not based on an accurate representation of the summary care record.

The GPC, which is demanding an explicit out-opt, said the letter was 'heavy handed'.

Dr Richard Vautrey, GPC negotiator, said: 'Patients need to be given every opportunity to opt out of their data being stored if that's what they want.'

Dr Alan Hassey, a GP in Skipton, North Yorkshire, and former chair of the joint GPC/ RCGP IT committee, said the department risked 'antagonising people' with its stance. He said: 'Even if it is a small number of patients there are people who will definitely want to opt out.'

Dr Gillian Braunold, GP clinical lead for Connecting for Health, said the department had to react strongly because 'disingenuous' claims were being made about the Care Record. She said: 'It is actually drumming up people's anxieties that the Government is not going to allow you to opt out, which is not the case.'

Dr Braunold said the guidance would explain how in highly exceptional circumstances patients could legitimately claim unwarranted distress in order not to have data stored. But she warned those not willing to have their name and address stored might struggle to find a GP.

The opt-out saga

May 2006

Connecting for Health publishes policy that patients cannot opt out of initial Care Record upload, but can stop their record being shared

1 November

Guardian prints letter for patients to use to opt out of initial upload

29 November

CMO asks GPs to forward on Guardian letters from patients

2 December

DoH sends letter to 1,100 patients saying they can't opt out

4 December

BMA accuses DoH of 'a total turnaround' and advises GPs to ignore CMO request

5 December

Connecting for Health rejects any 'turnaround' and says it will publish opt out guide shortly

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