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Protecting your medical records - apologies for long post, but this could be important for you.

(37 Posts)
B9exchange Mon 17-May-21 16:57:07

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.

"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 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 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:

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"

Sago Mon 17-May-21 20:12:05

As I understand it medical record sharing is for NHS use only.
Currently if you were admitted to hospital as an emergency the clinicians wouldn’t know any of your medical history.
The new system would mean direct access for the professionals resulting in faster and more effective treatment.

The NHS are not allowed to share any of this information under data protection laws.

My company conducted a market research project across a huge NHS trust a few years ago regarding this access.

I would be very surprised if there was any way around the GDPR.

Sago Mon 17-May-21 20:23:05

As an aside MedConfidential asks for donations, I feel they are scaremongering.
The link explains how and why data is shared.

geekesse Mon 17-May-21 22:38:56

Paranoia, verging on conspiracy theory.

People give out more personal information every day just by using the internet, posting to social media and using apps on their phone.

Doodledog Mon 17-May-21 23:37:07

I am uneasy about this.

I have had online access to my medical records for some time, and can see that far from being a way of co-ordinating hospital consultants with GPs, the only things that get recorded are test results or medication that the GP has ordered - hospital results are not there (unless they have been requested by the GP) and appear to be kept on paper files which are passed onto and filled in by the consultants and not linked to the records.

I agreed to the record sharing thinking that if I were run over or something in another part of the country it would be easier for medics to see things that may be (or may become) important when deciding my treatment. This is not the case, however, as records are only partly complete.

I am not happy for the information to be shared on any other basis, and to be honest, I was disconcerted at how easy it was to download and access the NHS app. All you need is your NHS number and date of birth, both of which appear on any letter from any doctor. These could easily fall into the hands of people who should not have access and be misused.

I firmly believe in doctor/patient confidentiality, and do not trust this government to tell the truth about anything (particularly Matt Hancock).

I'm not sure what to think, really.

B9exchange Mon 17-May-21 23:39:21

Sadly no, it is not conspiracy theory. The government has been trying to get its hands on GP and hospital data for many years, it is very valuable, and in the Health Informatics community, including national organisations including GPs we have been trying to retain the right of patients to opt out, and for the general public to be informed. This is the next attempt, and there is no public information campaign about this, which is why I am trying any route I can think of to get the the options out to as many people as I can.

If you have the NHS App, go into My Health tab at the bottom and you can view your opt out status for your GP record there. The second opt out for your hospital data will require you to complete the opt out form on Phil's MedConfidential website. As you can see, they don't make it too easy!

The last attempt was the debacle, which with all of us exerting pressure, including a huge amount of work by Phil Booth and his team, ended with the National Data Guardian requiring UK Government to take a different approach. Yes his website mentions donations to carry on his work if you feel strongly enough, simply because there is no other way to keep the investigation going.

You can read about the end of on the NHS website here

Sharing your data to assist your care is widely recognised to be beneficial to almost all. However wider sharing for purposes not related to your care, called Secondary Uses, is more controversial and it is this that we have been fighting to give you the right to choose.

If you are happy with this sharing, then read no further, but if it is something that might concern you or your family, then do take the time to read up and make your decision, you only have six weeks to do this.

Shinamae Mon 17-May-21 23:49:25

I have just been on a NHS app and opted out. Thank you

B9exchange Mon 17-May-21 23:52:15

BTW, the link in Sago's post is from the Wellcome Trust website, they have their own interests in acquiring the data. It is inaccurate when it says 'Personally identifiable patient data can only be used if there is a health benefit'. This is from the General Medical Council website

"Here are also important uses of patient information that are not connected to the delivery of health or social care, but which serve wider purposes. These include disclosures for the administration of justice, and for purposes such as financial audit and insurance or benefits claims."

B9exchange Mon 17-May-21 23:53:42

Thank you Shinamae I am glad I was able to help. Do use the other opt out form too if you wish to protect your hospital, as opposed to GP records.

Doodledog Tue 18-May-21 00:18:04

I don't have dependent children, and thanks to your post have opted out on the NHS app, and will tell my husband about it so that he can decide what he wants to do.

Sorry if I'm being dim (it's been a long day!) but I can't find another form to opt out of hospital records being sold. Can you point me in that direction, please?

Marydoll Tue 18-May-21 00:55:53

Are we only talking about English patients? Matt Hancock is not health minister for Scotland.( thank goodness!!!)

The system must be different in Scotland. No matter what hospital I attend, all my GP notes and notes from different hospitals can be accessed by clinicians. This joined up thinking makes collaboration among different consultants much more efficient.
When I was admitted to my local hospital recently with a heart attack, clinicians were able to access all my notes from other hospitals and act quickly.
What I am unable to do, which seems to be available in England, is access my own medical notes.

Surely GDPR regulations, should prevent sharing or selling of your information, without your permission?

BigBertha1 Tue 18-May-21 09:12:31

Yesterday I had to complete an online Data Protection training course for the volunteer role I have taken up in the healthcare sector. I was amazed the extend of safeguards in place and the requirements of staff to protect all data. I was very reassured.

Americanpie Tue 18-May-21 09:25:27

Good luck to any company that wants our medical records from a surgery in NHS Highland which shall remain nameless. My husband and I wanted our records to ensure that we had declared ALL of our known illnesses/ warnings for travel insurance, an acquaintance had a disaster which cost over £40k! These were photocopied and handed to us, both were over 8 inches thick and weighed a ton. We still haven't read all of the data. No computer records at our surgery. The data input team will have to employ thousands if this is correct.

B9exchange Tue 18-May-21 09:51:22

Medical Records don't come under GDPR, they come under the National Health Service Act of 2006. Your records don't belong to you, they are the property of the Secretary of State (Matt Hancock at present!) and whilst it has been a long hard fight to get an opt out from data sharing, it is the lack of publicity that I am concerned about.

Section 251 of the National Health Service Act allows the Secretary of State for Health to make regulations to set aside the common law duty of confidence for defined medical purposes. In practice, this means the person responsible for the information can disclose confidential patient information without consent to an applicant without being in breach of the common law duty of confidence, if the requirements of the regulations are met.

Marydoll you are right different arrangements for Scotland, the opt out from SPIRE, the equivalent in Scotland is here. I am not aware of a similar data grab deadline for Scotland, but contact me if you would like me to find out more.

Doodledog you can find the secondary care opt out here,

you have to use NHS Digital’s online process, this only works for individuals aged 13 or over.

If you have children under 13, you need to fill in the form on the link below and e-mail or post it back to NHS Digital on their behalf. (N.B. this form doesn’t work for you opting out your own data.)

For an adult dependent for whom you have legal responsibility, you must use the other form on the link below and send it back to NHS Digital on their behalf.

I might have been wrong about having six weeks to opt out, data will be taken on 1st July, but you are asked to opt out by 23rd June.
A summary here

Alexa Tue 18-May-21 10:34:08

Thanks, B9Exchnge, for taking the trouble to inform. I will comply asap.

B9exchange Tue 18-May-21 11:15:59

You are welcome Alexa I had thought I had gone into at least partial retirement, but have been fired up again by the attempt to bury this! grin

EllanVannin Tue 18-May-21 11:19:32

I, for one, would never be concerned.

B9exchange Tue 18-May-21 15:35:59

That's great for you EV and there are many like you, but for those minority who might be concerned, surely they have the right to know that they can make a choice?

GillT57 Tue 18-May-21 15:41:39

Thank you for the info B9, this is all about informed choice, and if we are not informed, then we have no choice.

Tea3 Tue 18-May-21 15:51:36

After a recent exchange with my GP surgery re some test results, I don’t think even my GP reads my medical notes!

Jaxjacky Tue 18-May-21 16:19:46

Thank you B9exchange first bit done on the app.

Visgir1 Tue 18-May-21 16:22:37

The other side.. As a Health Care professional in a Hospital setting. I run my own clinics.
We can now feed into the GP's info on patients for medication, recent events, other correspondence from different heath care agencies, which helps us treat patients, No doubling up.
When someone has issues communicating this is valuable.
Total pain when someone has opted out of shared data.
You would be surprised how any people have no idea what medication they are on, in some cases where they live.

B9exchange Tue 18-May-21 16:34:27

Of course the summary care record has its uses for hospital staff, although I woud always suggest checking every item with the patient because there are errors, and things do change.

It may be a pain for you to have to ask them again, but for those with a genuine wish not to share their records, they have a right to know that they can keep their data private if they wish. Data is collected primarily for the care of the patient, and should not be used for other purposes without patient consent, but the data grab by NHS Digital is for those other purposes as well. Everyone has the right to know they have a choice to opt out if they wish.

Marydoll Tue 18-May-21 16:38:30

B9Ex, thanks for responding to my post. smile

Alexa Sat 22-May-21 16:43:07

From the NHS: