De-registered patient and medical records

[Pseudonym99]

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

I don't not want my data being used for research. I just don't want it being used without my consent.

I think normally consent is sought explicitly for research where the data is going to be used in an identifiable way. Where it is, the opted-out records are just excluded, as I doubt it would be cost effective to ask everyone who's opted out if they'd like to opt in to the study in question. At a population level the absence of a few records isn't likely to be significant.

Yes at a population level, the small number of opt-outs won't be significant, but if we had an opt-in system, which is the only feasible way of getting explicit consent for each and every study, I'm guessing the majority of the population simply wouldn't bother, and then bang goes vast swathes of medical research - what we would have left simply wouldn't be representational.

What do you think HCPs are going to do with the data that is shared with them?

I truly don't understand why people are upset by their data being used for research. The researchers don't know it's you, you're just part of a total in their table. I hope people aren't thinking they are given access to your whole linked medical history, because they're not - only the aspects that are related to the study.

I truly don't understand why people are upset by their data being used for research.

No, but people do (and must) have the right to opt out if that's what they choose, JolieColombe. I agree an opt-in model is not practical.

So why was care.data stopped if they're going with an opt out system anyway? Surely if they'd gone with opt in in the beginning, they'd have more information than they have now?

I agree with you tribpot, it's important that everyone has that right - I just hate to see it exercised out of fear caused by misinformation.

I'm in a similar situation to you op. I DO have something on my medical records that I don't want anybody to know ever. It's not inaccurate but it is completely irrelevant to any condition I may suffer in future, unfortunately it can NEVER be removed. I can't sit across a table from somebody who knows this, I just can't ever, besides, it's nobody else's business. As a result I don't have a GP, I'm not registered anywhere and deregistered from the last surgery I was at without providing another GP that I was going to, although I did move at the same time. This was nearly 10 years ago now. I have asthma and have to take medication every day which I buy on the internet. I know my health is in danger having very limited access to healthcare, this does worry me sometimes but I now just accept this as I know that's just the way it is.

I have found no way around this, I doubt you will either but good luck.

I don't think there is a clear public statement on why care.data was stopped. Most of the newspaper reports make mention of the Caldicott review and the need to make the consent model clearer (however, the basis is still opt out).

Medical data is still used for research, it's just harder to extract than it would have been if care.data had happened. The aim was to have one, central store of linked records so that researchers didn't have to link records themselves (or pay for record linking to be done).

I truly do not understand why people are upset by their data being used for research

Because I want to control how my information is used, and if it is used for purposes to which I have not consented that would be illegal. But then the NHS just creates new laws to make it legal. Therefore it then becomes unethical. Perhaps there'll be some research into people dying because they don't go to the doctor as they're worried about what the NHS are doing with their information behind their backs.

What are you worried the NHS is doing with your data for research? What do you think can actually happen to you as a result?

I don't think you should have the right to access free NHS treatment if you expect the staff to do their jobs with their hands tied behind their backs.
It's not fair on the staff to have to treat you without the full picture that your medical records provide.

What are you worried the NHS is doing with your data for research

Anything it is doing they are doing without my consent. That is what I am worried about. The only things I can do to counteract that is to either not provide information, or provide false information.

I don't care if its fair on the staff or not. It is my problem, not theirs. If they want a full picture, they need to be fully trustworthy.

I feel like the Ethics application & data protection procedures are so stringent to try to reassure people... ppl like OP. But really nothing can reassure her. and in meantime a huge lot of valuable research can't ever happen because the hoops to jump thru are so difficult. Argh.

But I don't think you do object to the staff involved in your care having access to your records, do you?

You object to the data being used for research without your explicit consent - fair enough, you'll need to opt out.

You object to it being shared without your explicit consent - fair enough, you'll need to opt out. This opting out won't always be possible (e.g. if you have a notifiable disease) but in general you seem to want newly-captured data not to be onwardly shared unless you consent to it.

If staff in a clinic, let's say, have access pre-existing data in your GP record it's usually:

• because you've been referred to said clinic, in which case your consent is assumed because you couldn't have been referred in otherwise
• they have access to SCR, which you can opt out of
• they have access to your GP record through direct access like this or this, in which case you will be asked for consent to view, or you can opt out of.

So, there we are then.

Except its not as simple as that. How do I know to opt out of something if I don't know it exists? It is so complicated half the staff don't understand it

Could you not get that piece of information 'sealed' so no-one else can see it, Fakename?

This thread is bonkers. The OP doesn't want to listen to posters who disagree with her.

But those posters don't want to listen to me

OP, I'm assuming from your references to care.data that you're based in England. In which case, this page on NHS Digital digital.nhs.uk/article/404/Your-personal-information-choices clearly explains the two types of opt-out. I hope you find this helpful.

I'm curious though as to how you would like your consent to be sought for research studies - you surely don't mean on a study by study basis?

Have you asked your practice to go through the various forms of data sharing they are/aren't doing with your medical record? (I agree, it is too complicated but I don't get the impression you've asked them about it?). The Caldicott report (have you read it?) recommends on page 40 that it should be possible to opt out once and have that opt-out respected by all health and care organisations, which is the point you are making, I think. It is only everyone's data is protected hinted at here but NHS Digital appear to be building something which will support that, so you can register your dissent once.

In the mean time, each NHS organisation you deal with should have a fair processing notice.

Heh, I didn't think that rubbish link would work - my post above isn't meant to have the words 'everyone's data is protected' in, that's part of the URL.

I moved to the U.K. from abroad and even though I don't have any health complaints the lack of medical history available to my GP at the beginning was annoying.

GPs most of the time DO know better than people on the internet who were told it's all about the money for the big pharma. People Google the symptoms and then think they're bloody Dr. House.

Everybody has info on you, OP, everybody. This website, your internet provider, your petrol station where you normally fill up, and do not get me started on the banks...

Isn't what you're trying to do a kind of an identity fraud?