A practice manager has tried and failed to prevent her health record, which contains a significant error, being stored in existing databases and the planned national NHS Care Records Service.
Helen Wilkinson of High Wycombe, Buckinghamshire, who manages a practice in West London, has de-registered from the NHS following a long correspondence about the problem. Her sympathetic GP has offered to treat her for free and she has comprehensive private health insurance.
Her protests against her information being stored on existing and future databases have gone as far as health minister, John Hutton, who told her MP, Paul Goodman, last month: "Clearly Ms Wilkinson has a right not to choose to seek NHS care but I am sorry that it is not possible to agree a way forward that would have enabled Ms Wilkinson to remain an NHS patient."
The train of events that led to the minister’s expression of regret started last August when Wilkinson saw a report in The Times about the planned NHS Care Records Service. She told E-Health Insider: "I didn’t like the sound of this so I contacted my local primary care trust to try to find out how to opt out."
Correspondence ensued with her local strategic health authority and with the NHS Information Authority’s Caldicott Guardian, Janine Brooks. In the course of her enquiry, Wilkinson found her records on the NHS Wide Clearing Service (NWCS).
"I discovered that, without my consent, every hospital procedure I had had done had been sent to a private company in Warwick – McKesson. I discovered I had been put down as attending an alcohol advisory service. They mixed it up with a surgical procedure," she said.
The entry was a coding error which recorded the correct consultant seen by Wilkinson but showed the wrong part of the hospital, University College London Hospital (UCLH) London she had attended. The information had been fed down to her local PCT and other agencies.
"One thing I did discover is that NWCS is not really pseudoanonymised. My NWCS details include my full name and address as well as NHS number, date of birth and obviously my postcode as well as the GMC codes of my consultants," Wilkinson told E-Health Insider
Efforts to get the error removed from the NWCS failed, she said, though she stressed that UCLH had been sympathetic and had taken her records off its PAS and patient record system. The hospital has also provided her with paper records which she can take along to consultations.
Hutton, in a lengthy correspondence with her MP, made clear that the case was investigated thoroughly. "The Care Record Development Board, a senior advisory committee supporting the National Programme for IT has been asked to look at the issues raised by this case, which are not straightforward," he wrote.
The most recent announcements from the National Programme for IT say that patients will be able to opt out of having their information recorded electronically, but only if they can show they will suffer substantial damage or distress by having the records included. In addition they will have to make an application to opt out every time they wish to withhold information from their record – no single opt-out will be possible.
However, different rules are meant to apply to sharing information between agencies and other health professionals. In these cases patients will be asked for explicit consent to share their information.
Wilkinson commented: "I am really stuck. They are not allowing you to opt out of the NCRS."
She said she was very surprised by the incident. "Even when you work in these [NHS] organisations no one makes it clear what NWCS does. UCLH say that if I’m on their PAS they cannot stop data being sent to the NWCS. Patients just aren’t being allowed to make an informed decision."
She understands that seven years of NWCS data will be incorporated in the NHS Care Record Service and thinks there is widespread ignorance among primary care trusts and GPs most of whom believe patients will be allowed to opt out of the system if they wish.
The difficulties of enforcing a policy of patient choice were underlined on BBC Radio 4’s Today programme which reported that a senior civil servant had told Warwickshire GP, Dr Paul Thornton, that patients do not have any right to determine what information is recorded about them by doctors, or to veto how it is recorded.
The BBC said the statement appeared in an email sent by Phil Walker, the Department of Health’s deputy branch head of digital information policy. The BMA has called for the government to clarify the situation, in the wake of Walker’s e-mail.