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Senior GPs have called on colleagues to refuse to hand over patients’ medical records to NHS Digital, which plans to consolidate the files of 55 million patients across the country into a centralise database this month. That enormous database will be accessible to academics and some private companies with a relationship with the NHS. But a growing number of GPs aren’t happy about the data grab.
As it stands, all 36 GP surgeries in the London Borough of Tower Hamlets have agreed to withhold the data when collection begins July 1, 2021. An email calling on colleagues to mirror the protest has now been circulated to some 270 practices in England, The Guardian has reported.
Doctors believe the automatic siphoning of NHS medical records, including details on mental and sexual health data, criminal records, and more, will undermine trust between patients and their GP, Dr Ameen Kamlana, who is based in Tower Hamlets and taking part in the protest, has claimed.
“There’s an immense amount of good that can come from responsible and secure use of public data, public health records,” Dr Kamlana told The Guardian. “However, our issue here with this particular proposal is that it’s been rushed through. There has been no public information campaign to inform the public about the plans, and in order to allow them to decide for themselves whether they are happy about it.
“Essentially what’s being asked for here is people’s entire health record, so everything that we’ve coded in people’s records from the time of their birth to the time of their death, including their physical, mental and sexual health, including their health-related concerns with family and work and including their drug and alcohol history. Essentially all your most intimate private details of your life is being asked to be handed over and we were concerned that the public aren’t aware of what’s being done.”
NHS Digital outlines how patient data is used
Not included in NHS Digital’s upcoming database will be patient’s full addresses, any images or videos taken during private consultations, or legally restricted data, such as IVF treatment or gender reassignment.
NHS Digital says that anything in your records that could be used to directly identify you will be scrambled before it’s uploaded from your local GP practice. However, the organisation admits this process is completely reversible – NHS Digital will hold onto the code that unscrambles the data to its original state.
It claims that it will only ever reverse the anonymised data to reveal the identity of the patient “if there was a lawful reason to do so and it would need to be compliant with data protection law”. However, privacy campaigners have criticised the plans as “legally problematic”.
The records of 55 million patients in England compiled next month will then be made available to academics and commercial third parties, privacy campaigners have claimed. These records will be used for research and planning, with NHS Digital claiming that records “decide what new health and care services are required in a local area, informs clinical guidance and policy, and supports researching and developing cures for serious illnesses, such as heart disease, diabetes, and cancer.”
If you’d like to be omitted from the database, there is still time to remove your NHS records. To be exempt from the data-grab, you’ll need to fill out a form and submit it to your GP.
If you don’t do this before the deadline, which is June 23, 2021, your medical records will become a permanent feature of the NHS Digital database. Opting out after June 23 will still work, but will only apply to future data – any historic data will still be available to researchers, academic and commercial partners of the NHS. You can find the form required to opt out here.
Advocacy group MedConfidential, a privacy-focused group that has been pivotal in raising the alarm, told the Financial Times: “They’re trying to sneak it out, they are giving you six weeks nominally and if you do not act based on web pages on the NHS digital site and some YouTube videos and a few tweets, your entire GP history could have been scraped, never to be deleted.”
Speaking to Express.co.uk, a spokesperson for NHS Digital spokesperson said: “Patient data is already used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives. During the pandemic, data from GPs has been used to benefit millions of us: helping to identify and protect those most vulnerable, roll out our world-leading vaccine programme, and identify hospital treatments, which have prevented people dying from covid.
“We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data. The data will only be used for health and care planning and research purposes, by organisations that can show they have an appropriate legal basis and a legitimate need to use it. We take our responsibility to safeguard patient data extremely seriously.”
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