My view: Thinking about NHS Digital’s new scheme
Barry Gardiner MP, Brent North
- Credit: PA Image
As I type this my feet are sitting on top of two blue ice gel packs from the freezer. After my 26-mile marathon walk for Alzheimer's Society on Saturday, my feet are more blisters than feet and if you see me hobbling around Wembley over the next few days then you will know why! Sympathy is always in short supply in the Gardiner household – so a friendly beep of the horn or wave in the street would cheer me up nicely. A huge thank you to everyone who supported me from the community here in Brent. To date I have raised £4,740 and the just giving page is still open for a few late donations if anyone would like to try to round it up to a cool £5,000. The link is justgiving.com/fundraising/barry-gardiner-trek26
Now as I contemplated my pathetic little blisters, I thought of those poor families living with the terrible pain of a loved one affected by dementia. It struck me what a very private thing the pain and grief of illness is, and how lucky we are in the UK to have a health service that is focused on sorting the problem and not on monetising the treatment. And of course that got me thinking about NHS Digital’s new scheme for taking confidential patient data from GP records.
We are told that this data is for planning purposes. But I suppose the real question is whose planning? If the data is wanted solely for planning NHS Services why do the government refuse to ensure the data is anonymised, so it can never be tracked back to me and my blisters or some poor family suffering with dementia? Why indeed does the government say that the data collected and passed to NHS Digital will not be used “solely for commercial purposes”? That seems to me to be very clear that it CAN be used “partly for commercial purposes”.
Now I am guessing that 99.9 per cent of people reading this column do not know that their own confidential patient data will be taken from their GP records by NHS digital, unless they have specifically opted out before June 23 – just over two weeks time – and said they want to keep their personal medical data private.
The bond of trust between patient and GP has always been the gold standard of our NHS system. What we tell our doctor is part of that confidential GP/patient relationship. That trust, that confidentiality, will be undermined if millions of patients across Britain discover that their sensitive, personal information – their blisters and diseases – have been taken without their say-so in such a way that it can be monetised for commercial gain.
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Please, don’t everyone rush to complain to your GP. They simply have not been given the support or the funding to inform all their patients or administer a proper consent process. The government should have designed a scheme where data was totally anonymised and could never be traced to an individual. They should have prepared a proper information campaign to explain to the public what was going on. But that would have meant designing a scheme where your personal medical data was not available as a commercial resource.
What is it the tech companies say? If you are not paying for the service -- you ARE the product.
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