A national newspaper is advising readers how to opt out of the NHS Summary Care Record (SCR) on the national Spine database.
The Guardian today prints a clippable coupon bearing a letter which it advises concerned readers to send to the health secretary, Patricia Hewitt, with a copy to their GPs.
The letter lists 10 reasons for readers to cite if they want to require the health secretary to keep their personal health data off the Spine and advises them say – in the appropriate legal wording – that storage of the data will cause them “substantial unwarranted distress.”
Reasons suggested for opting out include: the current absence of ‘sealed envelope’ technology to protect very sensitive information; the lack of an online patient system to correct errors; the intention to make data available to other agencies and the policy of uploading information without patient’s explicit consent at the start of the process for creating SCRs.
Lengthy coverage in the newspaper summarises recent debates among the clinical community and other groups about patient consent for the new SCR; levels of access to the records’ content; difficulties in developing the technology to protect the very sensitive information of patients who are happy to share other details and the need, highlighted recently the Information Commissioner, for far tougher penalties for information crime.
A leader headlined “Spine chilling” says there are good causes for alarm about the way patient data is being transferred to electronic records.
“There is cause for real doubt about whether medical privacy can continue to be guaranteed,” it says.
The leader falls short of actually advising a boycott, concluding: "Until it can be shown that confidentiality can be guaranteed, patients will understandably be uncomfortable about entrusting the system with their records."
Harry Cayton, patient tsar and chair of the Care Record Development Board, tells the newspaper that "Dr Finlay’s days are over" and that the SCR will not damage trust between GP and patient.
“The NHS is not a set of personal private contacts,” he says.
Cayton concedes that the delay in providing sealed envelopes was a setback. Asked whether he could guarantee whether information would be secure, the Guardian reports Cayton as saying: “It’s a technical question. I have asked the question on numerous occasions. I have been given reassurances.”
A taskforce, set up by health minister Lord Warner and chaired by Cayton, to resolve issues surrounding the SCR is due to report at the end of November.
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