England’s chief medical officer Sir Liam Donaldson has written to all GPs asking them to forward to the Department of Health any letters from patients wanting to opt out of the NHS Care Records Service.
The letter has enraged GP representatives who claim it would be a gross breach of privacy to forward letters from patients without their explicit consent and claimed it was tantamount to asking GPs to spy on patients on the Department of Health’s behalf.
Dr Paul Cundy, co-chair of the joint IT committee of the British Medical Association and the Royal College of General Practitioners, has demanded that Sir Liam withdraw his letter immediately.
He told EHI Primary Care: “I think it’s crassly incompetent. People who have written to their GP because they are concerned about a ‘Big Brother’ surveillance society are not going to want their details forwarded to the Department of Health. If the CMO was worried about MMR rates and asked for the names of MMR refusers I wouldn’t do it so the fact that is about those people concerned about their data is even worse.”
The letter from the CMO refers to an article published in the Guardian on 1 November which Sir Liam says encouraged readers to write to their GPs to ensure that their records were not put onto the NCRS.
The letter continues: “I understand that copies of these letters and an associated cut-out coupon are beginning to be received in GP practices. If you receive any such letters I would ask you to send them to the Department of Health at the following address so that they may receive full consideration.”
The letter does not make it clear what “full consideration” would involve but goes on to outline the current state of play with the NCRS. The letter says that no clinical records are being put into the national database at the moment but that some sites will be piloting the Summary Care record next year.
It adds: “The initial upload of the Summary Record will contain only basic information, ie medication and allergies. We are not at the stage of a national roll out at this time. There will be plenty of time to discuss patients’ concerns with them before any data uploads take place in this area. They will be able to ensure their concerns are addressed and are able to discuss how they might effectively limit their participation if they wish.”
Sir Liam goes on to claim in his letter that the standard letters provided by the Guardian contain a number of misleading statements “for example that the Police and other agencies can gain access and that the Department of Health threatens to withhold appropriate medical care to objectors.”
However Dr Cundy claimed Sir Liam himself was being misleading as the DH has already made it clear that patients who decide to opt out would receive a lower standard of care, since their records would have to be kept on paper and therefore by default would not be able to receive the same care as others.
The Guardian article suggested that patients who wished to opt out should send a letter to their GP and a copy to health secretary Patricia Hewitt. Sir Liam adds: “The Department of Health is responding in detail to individual patients who have written to the Secretary of State.”
Sir Liam did not specify how many letters have been received by Patricia Hewitt. Two weeks ago a DH spokesperson told E-Health Insider that for the moment it would not be releasing figures on the number of requests received.
The advice from those campaigning against the NCRS is that practices who receive opt-out requests should for now simply add the appropriate Read code (93c3) to patient’s records. In his letter the CMO says the DH has drafted a proforma letter that practices can send to patients when an opt-out request is received. (NHSnet connection required).
A DH spokesperson told EHI Primary Care: "The original Guardian piece stated that patients who were concerned about their details being placed on the data spine should discuss it with their GPs. It went on to say that they could ‘put a block’ on their own data being placed on the spine by writing to the Secretary of State for Health and sending the same letter to the GP. The Guardian also carried a cut out coupon for this purpose.
GPs who’ve been receiving the letters have asked DH what to do with them. The CMO’s advice to GPs is to forward the letters to the Secretary of State – and these are letters that have probably already been sent directly to the Secretary of State for Health from patients. It’s perfectly appropriate for the CMO to advise GPs what to do with the copies they have received. The content of the coupon is in the public domain already, therefore there is no breach of patient confidentiality."
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