A scheme has come to my attention that I fear almost everybody does not know about, and if they did, would be horrified. One of the values of our society is the protection of our personal data, be it medical, financial, etc. In short, our private details are fundamental to our protections and rights in a free democratic society.
I became aware last week that GP surgeries will be automatically transferring our records to a central database for the purposes of “research” open to various unnamed third-parties, with no guarantee that this information about the public (you and me) will be deleted.
Every person must very deliberately “opt-out” of the scheme before June 23rd otherwise they will be automatically included. According to an official announcement on the NHS Digital website, data held in GP medical records will be collected via a new service called the General Practice Data for Planning and Research data collection. It will replace the General Practice Extraction Service (GPES), which has operated for over 10 years. The service will collect data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, and mental and sexual health. It will also collect information about data on sex, ethnicity and sexual orientation, and data about staff who have treated patients.
To my mind, having found out about this, I have a responsibility to share and inform those who likely will not know about it. If you are not concerned by this development, then you don’t need to do anything.
The Financial Times detail this data grab in more precise detail here.
The Mail on Sunday journalist Peter Hitchins (grumpy but trustworthy), also wrote about it here.
A great little video by Carl Vernon highlighting it can be seen here, citing the ….Guar…..Guard…..a paper that prints words!!! They are brave little soldiers for thumping away on their keyboards.
I’m sure other places covered it and if you are inclined you can do your own searches for it.
Here’s a comment from Dr Neil Bhatia, a Hampshire GP and information governance lead. He said it was the “biggest data grab” in the history of the NHS.
“It is going to be a scramble. If you want to opt out, you need to do it now. [You] cannot change that [in] six weeks’ time; you can only prevent new data going on the system. The health service is distracted with COVID. GPs are drowning. We would like to do something about it, but the government slips this out, and there is no going back.”
He also said patients may not know their information could be used by US companies planning to bid for work for the NHS: “I do not have any confidence the data will not be [given] to the private sector in the US. Nobody ever checks; once it is anonymised and outside GDPR, they can give it to who you like.”
You can print off and fill in the “Opt-Out” form by clicking here [.docx].
It is completely ironic that I say, for once, I am speechless.