NHS partially accepts criticism that it has failed to adequately explain how patients can opt out of care.data scheme
The NHS has conceded that it should be clearer about how patients can opt out of a controversial scheme to share their medical records in a single English database.
Patients have until March to opt out of the new system, which is aimed at improving research into the outcome of treatments, and will allow drug and insurance companies to buy “pseudonymised” medical information about them.
Last month all 26m households in England were sent leaflets about the care.data scheme as part of an information campaign, which includes a video setting what the NHS sees as the benefits of sharing medical records and information about the outcome of treatments.
On Tuesday the information commissioner’s office criticised the campaign for failing to adequately explain what data is involved and how patients can avoid their medical records being shared.
Speaking to the BBC Radio 4’s Today programme, Dawn Monaghan from the commissioner’s office, said: “At the moment we don’t think it is clear enough, on the website, or on the information that has been sent out, exactly what data is going to go and what is not going to go.
“What it says is that you can object to your personal confidential data leaving the GP surgery. We are not sure that without further explanation … whether people will understand what the means.”
Tim Kelsey, NHS national director for patients and information, who is charge of care.data, partially accepted the criticism.
“Maybe we haven’t been clear enough about the opt-out; I agree with that,” he said.
“Let me be absolutely clear now,” he told Today, “people who don’t trust the NHS to manage their data securely now have a new right to opt out of this scheme. To be honest all they need to do is contact their GP to opt out.”
Kelsey insisted that privacy would not be compromised by the scheme.
“We are doing this because it is vital that we help the NHS care better for the patients it is serving,” he said.
He explained that the NHS had been analysing similar data from hospitals for the last 25 years and that it helped pick up scandals such as high deaths rates at Mid Staffordshire hospitals.
Kelsey said the NHS now needed to analysis GP data to help improve treatment further.
Privacy campaigners warn that there will be no way for the public to work out who has their medical records or to what use their data will be put. Phil Booth from medConfidential, warned patients that their medical records would be identifiable unless they opted out of the scheme.
He said: “The main concern is this whole new class of data that care.data opens up, which is individual level, pseudonymise data, that is data which is not anonymous but which contains individual patient’s medical information and which can be re-identified.
“The biggest risk here is undermining people’s trust.”
Kelsey said Booth was wrong to claim that patients could be re-identified from the records, and challenged him to come up with any examples where this had occurred using hospital data.
“Doctors and nurses on the front line need to understand whether their service is as good as it could be. To do that they need individual level data. It is not identifiable … This data is stripped of all the identifiers.”
He added: “We operate the NHS on only a slim sliver of hospital data. And in 25 years there has never been a single episode in which the very strict rules have ever compromised a patient’s confidentiality.”
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