NHS patients in Croydon have less than a month in which to complete a form to exercise their rights and insist that their confidential medical records are not sold to private firms.
Doctors and medical activists have described the move as a “data grab by stealth, under the cover of a pandemic”. The medical records of as many as 55 million NHS patients are involved.
Matt Hancock has tried to slip the measures through to monetise patient records, giving GPs in England just six weeks’ notice to hand over their patients’ entire medical histories. But the Tory government’s health secretary now faces a court challenge.
Under the government proposals, information on mental and sexual health, criminal records, abuse and drugs use is to be transferred to a new database that will be made available to academic researchers and businesses.
Some – though not all – London doctors have taken the decision to pull the plug on the new data-sharing programme with NHS Digital and are refusing to hand over patient records.
“This data grab is unwarranted, unparalleled in its scale and implications and quite possibly unlawful,” according to east London GP Dr Ameen Kamlana in an article in The Guardian.
The doctor says that NHS Digital “has downplayed the significance of the move”.
Dr Kamlana wrote, “There has been no public awareness campaign, so you’d be forgiven for not knowing that your consent is assumed, or that you have only until June 23 to opt out from having your GP data extracted.
“What this means in practice is that all your GP interactions, starting from the time you were born (and including many of the most intimate details of your life) are at risk of being indirectly sold to corporations… What’s worse, your personal information will not be fully anonymous, meaning it is relatively easily identifiable as yours.”
The Tory government has attempted this kind of stunt before.
In 2013, a national programme called care.data was launched to extract GP medical records, only to be scrapped because of justifiable concerns over security and confidentiality and a lack of clarity and transparency about who could access this data and how it would be used.
Then, in 2016, Google DeepMind established a data-sharing agreement with London’s Royal Free Hospital. The personal information of 1.6million patients was handed over without adequately informing them, leading to the Royal Free being found to have failed to comply with the Data Protection Act.
Privacy campaigners have served notice that the health secretary will face legal action unless his latest stunt is put on hold.
NHS Digital, which oversees the project, insists all details on the database will be anonymous and protected by encryption security systems.
But lawyers for campaigners Foxglove and patients group JustTreatment say it is illegal, with no guarantees that highly personal information won’t end up in the hands of companies that could use it commercially.
Cori Crider, director of Foxglove, said: “This is being rammed through in a rush … If you ask patients whether they want details of their fertility treatment or abortion or results of other procedures shared with companies, they are not going to be happy.”
This latest scheme publicised only on the NHS Digital website and through flyers in GP surgeries.
Patients who want to opt out have to fill in a form and take it to their GP before their historical and future records become irreversibly part of the new information data set.
Phil Booth, the founder of privacy campaigners MedConfidential, said: “They are trying to sneak it out, with only six weeks left before everybody’s records are transferred.”
He added that because the NHS has “opaque”, commercial relationships it would be difficult to trace who ultimately views the data.
A NHS Digital spokesperson said, “The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it.”
- Click here to see MedConfidential’s advice on how to opt out.
- Click here for a copy of the opt-out form in pdf
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I am all in favour of open data provided it is subject to appropriate safeguarding.
The Open Data Institute (founder Tim Watson-Lee) respects the need for balance and I would refer those worried by present proposals to it