I’ve a lot of time and respect for my GP, not least because we see eye-to-eye on privacy matters. He shares my concern about the centralisation and automation of healthcare data, not because of any prejudice against the NHS (for which I also have the utmost respect), but because of the inevitable fallibility of any huge institution which brings together people, computers and sensitive personal data.
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During a recent checkup he drew my attention to the ‘care.data’ extract of medical records, and showed me some of the internal propaganda he’d received to persuade patients that there was nothing to worry about. Rather than attempt to recount it all, I’d like reproduce a mailer I’ve received today from the excellent Terri Dowty and Phil Booth at medConfidential.
Information that you share with your GP is about to be extracted from surgery records and stored on a centralised NHS system with your identifying details still attached. From there, it will be made available for administrative, research and other purposes. The government has claimed that your records will be ‘anonymised’ before they are handed over to anyone else, but this is not true. There are several circumstances in which data that identifies patients will be made available.
Once your information has been uploaded, neither you nor your GP will have any control over who it is shared with, who has access or what is done with it. You will not be consulted, nor will you be asked for consent. Uploads will take place automatically every month.
When you next visit your GP, you may see a small poster headed ‘how information about you helps us to provide better care’. This is how the NHS is explaining its plans to you and it is very misleading. It does not give you full details of the information that will be collected and it claims that it will not identify you.
Further down the poster you will see the words ‘you have a choice’. What this actually means is: if you do not want personal and confidential information to be taken from your medical record every month, the onus is on you to opt out of the scheme. If you don’t do so, it will be assumed that you consent to the extraction.
You will also find more detailed information about the scheme – known as ‘care.data’ – on the medConfidential website.
Please tell all of your friends, family and colleagues about this scheme, or forward this email to them. It is very important that everyone knows they must take action if they don’t want their information to leave their GP’s surgery.