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Plans to share NHS data

(27 Posts)
Daisymae Sun 30-May-21 11:10:37

Apparently plans are in place to share all patient data from GPs database for research and commercial purposes. I am not comfortable with this, although it is supposed to be anonymous.
www.theguardian.com/society/2021/may/30/gps-warn-plans-share-patient-data-third-parties-england

EllanVannin Sun 30-May-21 11:24:24

I remember this subject being broached years ago so I was quite happy for my information to be shared if it helps with future research. I've nothing to hide.

I do know that there was nothing entered in my hospital notes until 2006 which at the time was confusing all round as it was my first admission to hospital and there was nothing to refer to so staff had their work cut out grin

poshpaws Sun 30-May-21 11:33:54

I don't for one moment believe this corrupt regime will stick to allowing the NHS to maintain confidentiality. And even if I did, I still would be extremely irate to have my sensitive data shared with anyone but those directly involved in my care. Thankfully I live in Scotland, where Big Brother is not the norm; however my son lives in England and I object strongly on his behalf. What is told confidentially to one's doctor/psychologist/psychiatrist should STAY confidential. End of, no exceptions.

Kamiso Sun 30-May-21 11:51:39

digital.nhs.uk/services/national-data-opt-out

Nothing to hide or be concerned about here so they are welcome to look in my notes if it helps with future planning and possibly getting better insight into the “rare” cancer I have - which doesn’t seem anywhere near as I was previously told, one people are linked up on social media sites. You can find info on opting out if you are concerned.

Alexa Sun 30-May-21 13:05:54

Do you want that the NHS sell info about people's venereal diseases and mental instability to insurance companies?

mamaa Sun 30-May-21 15:11:47

In today’s Guardian
www.theguardian.com/society/2021/may/30/gps-warn-plans-share-patient-data-third-parties-england?CMP=Share_iOSApp_Other

Baggs Sun 30-May-21 16:01:42

I think that saying the plan is to share patients' data is misleading. It should really say the plan is to share anonymous medical data. The difference between the two is several orders of magnitude.

25Avalon Sun 30-May-21 16:06:50

If you go on the NHS app to record your Covid vaccine all the info on there can be passed on as the app isn’t run by the NHS

greenlady102 Sun 30-May-21 16:16:31

poshpaws

I don't for one moment believe this corrupt regime will stick to allowing the NHS to maintain confidentiality. And even if I did, I still would be extremely irate to have my sensitive data shared with anyone but those directly involved in my care. Thankfully I live in Scotland, where Big Brother is not the norm; however my son lives in England and I object strongly on his behalf. What is told confidentially to one's doctor/psychologist/psychiatrist should STAY confidential. End of, no exceptions.

1. Of course it doesn't! It is told to the other clinicians involved in your care and also used in the onsite training of student clinicians who may never have met you.
2. paper notes are horrendously insecure. They can be ready by anybody who walks onto the ward or into the office with the appropriate ID. There is no tracking or monitoring of who sees them.
3.I would have KILLED to have electronic notes when my late husband had several serious things wrong with him at once and multiple admissions to different hospitals. He used to carry a copies of the salient points of his notes, written up and printed by us in his "go bag" as he always arrived ahead of his information and was several times admitted via A and E. I say "copies" so that staff could have a copy of the information (or more than one) and he still had a copy for himself.
4. In any case this is not about medical notes (I wish it was) but about statistical data which is very different
5. As a retired clinician who has read THOUSANDS of patient notes, I can tell you that they are all (mine included) ineffably boring. Nobody cares who has tried to commit suicide or had multiple abortions unless they can do something to help and it is their job to do so and those people can access your notes anyway.

Alegrias1 Sun 30-May-21 16:17:54

The government haven't exactly set new standards of quality when it comes to IT systems in the last few years.

The assurance that the data will be anonymised isn't worth the paper its written on.

Quote from the article: The data will be anonymised and given “codes” that can be used to reveal the identity of the data’s owners if there is a “valid legal reason”.

So not anonymised at all, really.

Alegrias1 Sun 30-May-21 16:20:49

greenlady102 They are proposing to sell it for commercial purposes. How does that sit with you, from the perspective of a medical professional?

Daisymae Sun 30-May-21 17:00:24

As Alegrias points out it's only anonymous until someone decides it's not. What will that threshold be? Insurance? A mortgage or loan? Maybe a job application? This is being gentle slipped in, data is a very precious resource we shouldn't give it away so freely.

B9exchange Sun 30-May-21 17:02:30

I started another thread on this which some of you have posted on, but I am so glad that it is coming into the mainstream press. The only notice of this was a posting six weeks prior to go live on the NHSDigital website, and if it wasn't for the likes of MedConfidential and Privacy International, we would all have had our data scraped up and been none the wiser.

Some points to note. It is all your data, name, address, DoB, all diagnoses, allergies, drugs, operations etc which will be extracted on 1st July. You have up until 23rd June to opt out if you don't want this to happen.

The majority of the population won't be worried, and there data will be valuable in research, but there will be some for whom this is really important. If you are an abused spouse hiding from your partner, if you have had a medical procedure that you want kept between yourself and you doctor, if you are an unsettled immigrant, even if you wish to keep your religion or gender from prying eyes, then you may well wish to opt out, and to be denied this choice through lack of information is so wrong.

All this data will be used to create a massive database, with access to it sold by NHS Digital to any company that applies and that they can see no reason not to grant it to.

Look at the list on www.theysolditanyway.com/ to see where it will be going.

This was tried before, when NHSDigital's predecessor was forced to inform people first. They sent unaddressed leaflets to each household, delivered along with the Chinese takeaway and pizza delivery flyers, and most people put them in the bin without reading, which a sceptical me wondered if it might have been half the intention.

From the care.data debacle of a few years ago, 2% will make the effort to opt out, this will not affect the quality of research, but those 2% have the right to that choice.

You will hear talk about anonymised data and pseudonymised data. Anonymised data is just numbers of cases. That is fine, but if you have a very rare disease, and the company paying for your data also pays NHS Digital for data linkage to another database, eg demographics, you could easily be identified.

Pseudonymised data is re-identiable without too much research.

Identifiable data will not be released unless there is deemed to be a good reason, but a change of government could well demand the identification of all those of a group they are interested in. Do you really trust this government not to combine databases if it is to their advantage to have that control?

I am not scare mongering, I have worked in health informatics for many years, my only concern is that everyone should have a choice in what happens to their own data. A well respected colleague used to refer to 'data rape' - taking your data without consent, she had a point.

Baggs Sun 30-May-21 17:05:37

25Avalon

If you go on the NHS app to record your Covid vaccine all the info on there can be passed on as the app isn’t run by the NHS

It will be subject to the same confidentiality rules as the NHS.

Baggs Sun 30-May-21 17:06:39

Baggs

25Avalon

If you go on the NHS app to record your Covid vaccine all the info on there can be passed on as the app isn’t run by the NHS

It will be subject to the same confidentiality rules as the NHS.

So the data that is "passed on" will be anonymous, which is what matters.

B9exchange Sun 30-May-21 19:18:38

No, the data passed on will be fully identifiable in to a vast NHSDigital database. No data will be released in identifiable form unless it has a Section 251 exemption, or there is a particular reason for doing so, but as I have pointed out above, by paying to link different databases, it is possible for companies to re-identify.

B9exchange Sun 30-May-21 19:23:21

I do wish the Guardian and other papers would actually include where to get the opt out form, there is not much point in flagging this up without providing the necessary help! medconfidential.org/wp-content/uploads/2021/05/Type_1_opt-out_letter.pdf can be filled in and taken to your GP surgery. You can only opt out of your secondary care data being used for research, in order to get the Type 1 opt out, you must take the form to your GP surgery, unless you already opted out during the Care.data scheme which collapsed.

B9exchange Sun 30-May-21 19:26:05

Sorry, that should have read you can only opt out of your secondary care data being used for research online. You have to send the form to your GP surgery for Type 1 opt out to protect your GP records from the download on 1st July

NotSpaghetti Tue 01-Jun-21 12:56:17

Here’s the info from i newspaper - including links:

“Your NHS data will be shared with third parties with weeks to opt out - GPs like me are worried”

inews.co.uk/opinion/nhs-data-shared-third-parties-weeks-opt-out-gps-worried-1028042

NotSpaghetti Tue 01-Jun-21 13:02:00

From i
These records will be “pseudonymised” – which means that the identifiers such as date of birth, NHS number and exact postcode will be replaced by a code.
However, this can be reversed, according to NHS Digital, if there is “a valid legal reason” to do so. It is not clear what such a reason might be, but the fact that it is possible to re-identify the records is a cause for concern.

ayse Tue 01-Jun-21 14:36:18

I see this as getting my info by the backdoor. I don’t want to share my data with all and sundry but only with those of my choosing. I’m very happy to allow any NHS hospital etc. to access my full information.

Can anyone tell me how this fits in with the Data Protection Act? Why should some private company have free access to my information for medical research or anything else without payment?

To me, it’s all very disturbing and smacks of a fascist state. I’ve book marked the info and will download the form and complete it by the due date.

Why has this not been publicised? How much will our government be paid for this information?

So many unanswered questions.

ayse Tue 01-Jun-21 15:06:22

Can anyone tell me who will be able to access my data and where to find the info on the NHS Digital website please?

25Avalon Tue 01-Jun-21 21:41:42

You have until 21st June to opt out or you will be automatically included.

watermeadow Wed 02-Jun-21 18:40:44

This government has been privatising the NHS, bit by bit, for years. They know there are vast fortunes to be made out of drug companies and health insurance. Their eyes are set on the appalling American model.
All the NHS records and data will be for sale to commercial corporations and, one day soon, you will only get medical care if your compulsory insurance will pay for it.

B9exchange Wed 02-Jun-21 19:28:13

Hooray, it has finally been flagged up on The One Show!

Two types of opt out

Type 2 which has now become the National Data Opt-out is the opt out from allowing NHS Digital to sell access to your records to any of these organisations, and probably more www.theysolditanyway.com/ You can opt out of this online on the NHS Digital website.

Type 1 opt out prevents the extraction of your full identifiable GP records which will take place on 1st July, and anything extracted can never be deleted by future opt outs.

*You cannot do the Type 1 opt out online* If you are not happy about this extraction, you have to give a written authority to your GP Surgery. There is no opt out form to do this on the NHS Digital website (contrary to what was suggested just now on the One Show!) but there is one written by a GP here medconfidential.org/wp-content/uploads/2021/05/Type_1_opt-out_letter.pdf