The Department of Health has rejected patients’ requests to stop their information being uploaded to the NHS data spine.
On Friday the DH wrote to patients who had sent in a coupon from the Guardian newspaper requesting to opt-out telling them that would not be able to do.
The eight page letter from the DH to patients claims that much of what has been written about the NHS Care Records Service is inaccurate and aimed to set out the reasons for the introduction of the NCRS. The letter states that the NCRS systems being introduced have been specifically designed to support patient confidentiality and to restrict access to only those who need to see parts of a patient’s record for their care and would be more secure than existing systems.
It adds: “Returning now to the request in your letter that the Secretary of State for Health should stop the process of adding your information to the new NHS database on the grounds that it is likely to cause you substantial unwarranted distress, I am afraid that I am unable to agree your request.”
Patients who believe they do have “further unique and personal reasons for claiming substantial and unwarranted distress” are invited to write explaining those reasons to the DH’s Customer Services Centre.
The response has been criticised by the British Medical Association who claim ministers originally promised that patients would be able to opt out and that to deny that right would breach the Data Protection Act. Dr Hamish Meldrum, chairman of the BMA’s GPs Committee, said the BMA is now "seeking urgent assurances" from the DH over the way the National Care Records Service will operate.
Dr Meldrum said: “We will be seeking urgent clarification on behalf of patients from the Department of Health as this seems to be a total turn-around on the assurances previously given by ministers that individual patients would be able to opt out of having their personal health records on the national database if they did not wish them to be included."
He added "The health department now seems to making a distinction between consent to sharing the personal information and consent to having the information put on the central database. Patients must be able to retain the right not to have their data uploaded in the first place, should they choose to do so. We want patients to have confidence in the system and to be able to reassure them about its value, but denying patients this right will only undermine that process and is totally unacceptable."
Dr Meldrum concluded: “The letter from the Department of Health to patients who have indicated they will wish to opt out seems to be at the very least unwise and ill considered.”
The DH letter one by one rejects the reasons highlighted in the coupon for patients to opt out including the fact that sealed envelopes, which patients can use to hide sensitive information from view, will not be available when the Summary Care Record begins to be uploaded next year.
The DH letter states that “equally secure though less flexible” measures are in place for the initial phase of the SCR service. The DH says this will mean that patients can have their record flagged so that the SCR cannot be accessed without permission.
The letter adds: “You have the choice of a full summary, a partial summary, or a summary that can be seen only with your permission. The same level of security that will be available through the “sealed envelope” procedure will therefore be available, through different means, in these early stages, to limit access to your records.”
Details of the way the proposed sealed envelope system will work are expected to be released shortly.
Link