The NHS in England is introducing Summary Care Records using a policy of "implied consent" – patients are assumed to agree to the creation of a record unless they refuse, reports The Guardian. The BMA wanted these to include an opt-out form. But Connecting for Health (CfH), the NHS body running the scheme, refused.
Instead, patients who do not want to participate have to get an opt-out form from their GP or request one by letter, helpline or website. Some 1.24m records have already been created and another 8.9 million patients have received a letter about the programme, according to the Department of Health. A record will be automatically created for each patient after 12 weeks unless they specifically withhold their consent.
Isabella Sankey, director of policy at Liberty, the human rights organisation, voiced serious concern about the summary records. "There would have been very good arguments for clear public information and an opt-in policy for this scheme," she said.
"But the worst of all worlds is to alleviate political criticism by providing a so-called opt-out which is inaccessible and virtually meaningless. How do you expect people to trust you with their most sensitive and private information if they can't even trust you to be honest in trying to gain their consent?"
Katherine Murphy, director of the Patients Association, said summary records could improve the care patients receive, but that they should all be given an opt-out form. There should also have been a national advertising campaign so people could start thinking whether to participate or not, she said.
Some doctors accuse the NHS of trying to scare patients into agreeing by claiming that future medical care could be impeded if they refuse. The opt-out form asks the patient to acknowledge that any future treatment may suffer if they do not have a summary record. "There is no evidence to say that is the case. It is scaremongering," one London doctor said.
Some GPs are refusing to release their patients' details until each one has specifically agreed. "We will not upload anyone's records without their explicit consent," said Dr Neil Bhatia of Yateley, Hampshire. "We control the data records and we are responsible for its release. No one can force us to upload it without a court order."
Wirral primary care trust in Cheshire was recently warned that pursuing summary records could be illegal. Despite these reservations, it accepted almost £70,000 from the NHS to pay for packs to be sent to patients.
Prof Ross Anderson, a security expert at Cambridge University, said there was no guarantee that only NHS staff treating someone could access their records. Hundreds of thousands of health service personnel would have a swipecard to enter the system.
"You just can't keep a secret if 300,000 people have access to it. All celebrities should definitely opt out," he said. "The sort of things you can find on SCRs, such as prescriptions for anti-retroviral drugs, can also be highly stigmatising."
The BMA is writing to Andy Burnham, the health secretary, to say that while it supports the idea in principle, it has serious concerns. Dr David Wrigley, the BMA council member for Lancashire and Cumbria, said: "How do we know that people have received the material in the post? Doctors in my area wanted a tear-off strip to be included at the bottom of the letter for patients to fill in and hand in to their GP's surgery to say no they didn't want a SCR, but CfH told us we couldn't do that."
A Department of Health spokeswoman said that the model of implied consent being used was adopted in accordance with national information governance good practice and was supported by the Information Commissioner's Office.
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