De-registered patient and medical records

[Pseudonym99]

If I am no longer registered at a GP practice, where would my medical records be kept?

Nickname

You need to define scaremongering. Some of the stuff the NHS does with your information some people aren't fussed about. Others are. Some people consider pseudonymised data to be anonymised - others consider it to be identifiable as data can still be linked. It all depends on your own personal views, and the NHS doesn't make it easy as it just redefines words such as 'anonymous' as it sees fit.

Pseudo I've not read the entire thread which is now rivalling War and Peace, but I think you ought to be aware that data on you is in circulation already.

If you have ever used a credit card, shopped online, have a bank account, are a taxpayer, have taken out any insurance or credit, there is info about you out there being shared. Data warehouses hold billions of data and data scientists do things with it you'd not believe :)

I doubt very much if you can delete your entire medical records. My understanding, having tried to access some of past relatives for legit reasons, is that they are held at a central data collection place for 10 years, after someone dies, or maybe de-registers with a GP.

"I cannot address trust issues when the NHS is hellbent on abusing that trust"

"What I'm afraid of, Fallon, is information might be shared about me without my knowledge or consent."

Can you not discuss this with an HCP?

"And NHS staff need to stop being patronising and switch off their red flags and respect their patients"

I don't find HCPs are patronising towards me at all. I think perhaps you come across as a little too defensive and it makes it rather challenging for someone to treat you. They might show you more respect if you show them some respect instead of treating them as the enemy.

GreatNorthern

The difference with credit cards etc etc they make you fully aware of what they are doing with your data. With the NHS, you have to pry this information out of them. NatWest does not share your credit card spending with Nationwide who have your current account. Yes, you have the credit reference agencies, but they just show summaries, and it is all very transparent. The NHS would have us all believe that we can trust our doctors, that all our information is private and confidential, which is not the case at all. The banks tell us the truth; the NHS lies to us.

I am defensive simply because they ARE the enemy. If they want respect they need to earn it.

I'm not disagreeing with you OP But what I am saying is that whatever you want to hide may be known already.

No neighbour asked question annoymously with postcode attached and as we living in a small town loads of people recognised her. It highlights even snippets of information can be identiabke. She made the same mistake with 38 degree everyone knew who Marge at first 4 digits of the postcode was voting for. It is well known locally she made these errors and the first four digits of the postcode identified her.

I don't work for any of the organisations you mention. Everything I have cited has been in the public domain.

Nickname - what the thread has highlighted is that there is a lot of sharing of data beyond the basic 'go to Out of Hours and someone asks if they can look at your GP record' kind of data sharing that is what most people will think of. All complex organisations have to ship data around to support back office functions - if you think this is bad, imagine what it's like shipping call records from country to country when you're roaming with your mobile phone. I think NHS Choices could do with extending this section on health records and sharing to make clear what some of the major invoicing functions of the NHS entail. For example, when you take a prescription to your pharmacy, this is then sent to NHS Prescriptions Services, who reimburse the pharmacy and charge the cost back to the relevant health authority.

They should also explain CQRS, QOF, Screening, Vaccs targets etc and effects of things like a GP collecting data on "smoking status" etc that bumps up their income both Practice Income and Personal income. Also full consent should be obtained for smear tests eg how it increases Personal and Practice income as consent for highly intimate clinical data being put on national "fanjo database" Open Exeter for back office functions. Women are not aware there is an England wide "fanjo database" containing high personal information such as which contraception or HRT the woman uses. GP Surgery's should be including this information in their confidentiality and consent patient documents as well as the time of taking a smear. This is vitally important now due to the Montgomery and Lanarkshire Health Board case. Not forgetting SUS and HES information should be made available at point of referral as well as general information provided by GPs and Trusts. This would help patients like OP.

Banks and financial institutions explain sharing of your information when you sign up there is nothing on the GMS1 when one registers with a GP. This is potentially unlawful as it fails to comply with "fair processing" under the DPA as well consent which is legally vital as per the Montgomery case.

There is also the issue that Helen found as an ex HCP she did not how data was used. So speaking to an HCP may be falsely reassuring as they more often that not do not know where the data goes after they have completed their task in hand.

Why are you so obsessed about patients attending for smear tests to be told that this will increase practice income? As I've said before, there are many procedures carried out in general practice in almost every consultation which will do the same.

"Also full consent should be obtained for smear tests eg how it increases Personal and Practice income as consent for highly intimate clinical data being put on national "fanjo database" Open Exeter for back office functions"

Tipsycat this comment shows how little you understand the NHS and how general practice is funded. It's fine being ignorant but to use this thread to confuse and upset others is not helpful. Insinuating that GPs carry out tests purely for financial reasons is out of order, as well as ridiculous.

Not purely for financial gain. However QOF chasing generates income GPs, in my experience, are terrified patients find out this as it may affect their bottom line. Can I ask what your issue is with allowing patients transparency?

Full consent for a smear should include this information re targeys, qof and Open Exeter in the consent process. Take a look at the Montgomery case patients should be told all the relevant information in order to full consent.

Smear are good example re the rest of QOF re consent.

I am old enough to remember when we didnt know what caused cervical cancer. I was involved in setting up mass screening and data collection in the early 80s.
Now we have a national screening and immunusation programme. Yes it still needs improvement but if everyone thought like the op we would never have got this far.
We used to come across the occasional woman who was keen to have her free smear and breast exam but very annoyed about the anonymous data collection part of the program and refused to cooperate. Thankfully they were in the minority.
The NHS isnt perfect but its days are numbered and we will miss it when it is gone.
Private health care/insurance is very expensive and selective.

This is a serious issue within the NHS it is not about getting patients to "cooperate". Its about getting fully informed consent providing patients with the information they need to fully consent through transparency. The Montgomery judgement confirms this a legal necessity. I can this may well upset some medics but this legal judgment now makes it a legal requirement in order to gain fully informed patient consent.

In the old days there wasn't as much research going on and patients did what they were told and only knew what they were told. These days far more use is being made of patients' data, patients are better informed and demand more control. Medics don't like this shift in balance of power.

Informed consent as a concept is a very sophisticated, legally defined entity now. Things were very different 30 or 40 years ago. Not just in the nhs but in so many other areas. You cant apply the same standards retrospectively.
I support transparency and informed consent absolutely and there is some way to go. But standards are better than they were IME.

I spent 15 years in clinical research and never came across anyone who didnt want to follow the rules about informed consent.
There are hefty penalties for not doing so, including being struck off and going to prison.
That does tend to focus the mind.

I thought it might be useful to provide a link to the ruling and advice on consent.

endoftheline
Trouble is, there is this thing called 'Section 251' which allows researchers to side step obtaining informed consent. It is designed for those occasions when it is impossible to obtain consent for vital studies, such as when people are dead. But it is used to save researchers the bother of having to ask those who are easily reachable.

Here is Section 251 of the NHS Act and here is information about it.

Pseudonym99 - Sec 251 still ALLOWS patient opt out and screening programmes and NHS organisations must still legally comply with "fair processing" under the DPA and the legal requirements of the Montgomery judgement.