NHS Digital re-hashes old scheme
Matt Hancock (left) thinks the NHS should ‘go digital’. This may be the way forward, but …. for many it will make the NHS inaccessible.
Or, as will happen if a current scheme to digitalise GP records goes ahead, it could mean our private health records being for sale to private companies to use for marketing.
Breaking news
- how will patients be notified (including people who aren’t online?)
- They are promising to store our health data in a “trusted research environment” – but how will that work?
- who gets access and on what terms?
- What will corporations be allowed to do with our health data?
- What if we DON’T want to share our personal data?
This old chestnut was supposedly knocked on its thick head in 2014, but it is back again as a potential money-spinner (for big business – not us). Chillingly, one NHS website currently states If you do not want your identifiable patient data (personally identifiable data … to be shared outside of your GP practice for purposes except for your own care, you can register an opt-out with your GP practice. This is known as a Type 1 Opt-out. Type 1 Opt-outs were introduced in 2013 for data sharing from GP practices, but may be discontinued in the future
I had my suspicions that this was already happening, so last time I contacted 111, I gave a false name. A week later an anonymous nuisance phone caller called me asking “are you XXX? (using false name I had given). We understand you have been involved in an accident”,
In 2014 there was an uproar when patients discovered the NHS had plans to ‘share’ our medical data. When we opted out – wasting ours and the GP’s time – one would have thought that was the end of it. Not so. According to The Daily Telegraph, Guardian, Daily Mail, etc. the NHS plans to put our medical histories into “a new central database which will then be made available to the private sector and other researchers” i.e. insurance companies, big-Pharma, etc.
This database will include very private information, such as medical records of physical, sexual and mental health problems we may have been treated for.
Supposedly we can go on the NHS Digital website to opt-out of sharing this information. I tried this, and found NHS Digital loves to hide its information – but to start the opt-out process, go to
https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/
It asks a few questions, then says it will send a Security code to enable you to take this further.
When a code arrives in my inbox; I can’t get back to the original page so fill out my details again, and this time enter the code. Up comes ‘Incorrect code’. Try again – same result. Fill out the form again, get another security code, and still telling me ‘Incorrect code’.
I now have three codes; the latest email from NHS Digital repeats the first code sent! And it still doesn’t work!
NHS Digital’s Press Office can’t do anything (useless lot) but suggest I try their Contact Centre. 31 minutes later I hang up, get back to the Press Office, and suggest that if Hapless Hancock, Minister for Health, really wants to enter the Digital age, his staff should learn how it works!
For a simple way to opt-out, medConfidential has a form here to print out or send to your GP https://medconfidential.org/how-to-opt-out/
East London GP Dr. Ameen Kamlana has a very lucid explanation of the problem here : https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england
And the Daily Mail highlights that Foxglove, a campaign group for Digital Rights, is urging the Government to reveal exactly who will have access to U.S. Software firm Palantir – the company that provides data and surveillance technology, and is siffing around the NHS. Human Rights groups are also worried that Palantir is around https://nopalantir.org.uk/
In its defence, NHS Digital is quoted as saying “only organisations with a legal basis and legitimate need to use the data” would have access to it.
So who defines “legitimate need?” The cronies who proliferate in Whitehall these days? Seven years ago I thought that the NHS had learned that the British public does not want its private data sold off, however many promises are given. But it seems not.
Clearing up after the Corvid Crisis, one would have thought NHS Digital would have enough to do, without taking time out devising schemes to sell off our data.
Currently, unless public outcry halts the programme, we have until June 23rd to opt-out, if we don’t want our data included in the scheme.