There is an organisation called MedConfidential which has been battling for years to protect the right of everyone to keep their medical records private and to be used solely for their clinical care. The have now issued the strongest warning I have ever seen from them about the latest government plan to take this data and share it with research, insurance companies, banks, police and the like.
The majority of the population won't care what happens to their records, and that is absolutely fine, but there are those for whom this could be a disaster, such as those hiding from abusers or immigrants, and there will be about 2% of the population who would just like to keep things private anyway.
I have published below an email just received from Medconfidential. medconfidential.org/
"Let us tell you about the massive new GP data grab the Government would rather you didn’t hear about...
The countdown has already begun. The Government’s plan is to copy your entire GP medical history – including all the most sensitive parts – and make it available for third parties to apply for and buy access. Even though Matt Hancock directed it to happen he’s not going to tell anyone about it. Neither will Boris.
Details are still a bit sketchy; critical documents like the programme’s Data Protection Impact Assessment aren’t (?written) published yet, and some of what’s being said to patients seems... contradictory. The promise that “you can opt out at any time”, for example, doesn’t fit with the fact that once your data has been copied, it will never be deleted.
We will provide more information as it emerges, but for now...
If you’re wondering why you haven’t heard about this, it’s because they haven’t told you. The Government are playing the odds that you, your family and your friends and colleagues won’t have noticed some information they buried on a website, or the handful of tweets they’ve made.
While you can opt out, they’ve made it deliberately confusing and difficult. Unlike the single form medConfidential provided at the beginning of the previous attempted GP data grab in 2014, you must now use several:
•The most important one is the ‘Type 1’ opt-out form – this is the only opt-out that will prevent your GP data being copied to NHS Digital, and then onwards. If you haven’t done so already, you need to fill one in and send it to your GP practice within the next six weeks. (If you opt out after 30 June, your GP data could be copied from your practice at any point and, once copied, it will never be deleted.)
•If you opted out from care.data in 2014, your opt-out will still be valid. Your own GP practice may still be using a form from that period, but it is completely different from the ‘National Data Opt-out’, which used to be called a ‘Type 2’ opt-out. Bottom line, if you opted out of care.data in 2014, you should be OK for now.
•The National Data Opt-out, introduced in 2018, limits NHS Digital from selling access to some of your data in some circumstances. (They still sell it 85% of the time.) This opt-out process is supposedly ‘digital first’ but in 2021, for people and families with dependents, NHS Digital’s process still involved multiple PDF forms – which we’ve combined into one. And because the process is so overly complicated, we’ve created a page to help guide people through it: medconfidential.org/2021/children/
If you don’t opt out before 30 June 2021, the Government will take a copy of everything medical that ever made it into your GP record, throughout your whole life – apart from some limited aspects of information around gender recognition or IVF treatment (if you have received any).
The first upload will be of your entire GP medical history to date – which will happen as soon as your next GP appointment, possibly even before that – and then there will be daily updates thereafter, to copy every new thing that is recorded about you.
There will doubtless be much more to come, but the headline is this:
The Government intends to take your entire GP history, and isn’t even planning on telling you that you have a choice, i.e. by writing you a letter.
This time they are not even sending out a junk mail leaflet, but they might do some tweets and social media ads. (As we write this, their YouTube video appears to have fewer than 260 views.)
To summarise, the process to dissent fully from the copying and then further use of information from your GP record for purposes beyond your direct care is as follows:
•Give a Type-1 form to your GP, for your whole family’s GP records;
•Do the online National Data Opt-out (NDOP) for yourself;
•Download, fill in and e-mail the multi-page NDOP form for your children.
There should be better options, but this Government apparently doesn’t want to listen.
medConfidential has been fighting to ensure every use of patients' data is consensual, safe, and transparent since 2013. We aren’t there yet, but there’s every reason to believe that if enough people take action, we will get the protections you and your family deserve.
This Government sees so little value in any form of protest that it is trying to ban it through legislation. And its Ministers’ (and senior officials’) view of profit seems to be that ‘any means are acceptable’. Indeed, in a global shortage in the throes of a pandemic, politicians picked their friends to profit off the NHS to provide PPE for nurses.
Why would anyone believe they wouldn’t seek to profit in exactly the same way from your health data?
If you’ve been passed this Bulletin and believe they can be persuaded to change course, or if you simply want to be kept informed, please join our mailing list for more news. And don’t forget to forward this e-mail to your friends and loved ones, who may wish to make their own choice before the end of June.
Phil Booth & Sam Smith
17th May 2021"
. The code to put in the clinical data system to prevent your data leaving with all the rest is the same one as for the disastrous Care.data, so not difficult for them.