De-registered patient and medical records

[Pseudonym99]

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

Wrt to what tribpot says, we often send a request to central records to look for "lost notes" via known names and date of birth if we have large gaps in history. We usually do this with children at my practice but has been requested for adults too and it is done to promote best practice and patient safety reasons.

You clearly have your reasons but I think that others have said it may be better to address your concerns about confidentiality.

Well, my body, my choice. By consent I mean all this data sharing going on, not all of which you can opt out of. As a compus mentus person I can override a doctor's duty of care for me. If I were to register with a new doctor could I instruct them not to obtain my previous medical records? Just to prevent stuff being combined in one location. Not to hide some dark past!

And not to obtain hoards of prescription drugs to sell on the black market

The only way to address my concerns for confidentiality is to not provide information, or prevent the sharing of it, as the NHS has decided to do away with the concept of confidentiality

I work in the NHS. If you asked me not to obtain your medical records it would be a huge red flag.

Your notes would be sent back to central records. To start with a clean slate you would need a whole new identity - name, date of birth, etc. Your NHS number is like your National Insurance/Social Security number, it follows you round for life, and you would need to prove who you are when registering. We don't accept anyone without photo Id and proof of address.

As much as people probably think otherwise, medical notes make very dull reading. You can apply to view your records so you can see exactly what is in them (if in the UK)

Pseudonym what you are saying doesn't make sense and will draw red flags for medical staff you are dealing with.

Perhaps you should elaborate to your new practice on your concerns to see if they can be addressed?

How has the NHS done away with the concept of confidentiality in your opinion?

Are you talking about the summary care record? You can opt out of that should you wish.

All this data sharing?
In order to provide better care you mean?
If it bothers you that much perhaps get health insurance and go private.

Would it be worth meeting with your current GP to frankly discuss your concerns re: confidentiality? I can't think of a way for you to obtain what you want (or why you would want to).

Do you have any medical training? How would you ensure medics had the necessary information to help you if you weren't in a position to provide it (unconscious / confused etc.). Would you know any contraindications of any treatment you may need?

As a medic I'm utterly not interested in a patients past other than what pertains to their current treatment.

Not only the Summary Care Record. You have care.data, other record sharing things which I may or may not know about. And NHS staff need to stop being patronising and switch off their red flags and respect their patients

When the surgery looks to create a new referral it automatically looks for your name and DOB on the spine. NHS numbers are created at birth and only recreated for children in care and other very specific reasons. Even then I'd assume they would link at some point.
You can ask for previous consultations to be marked at confidential - but GPs can override this because they and other care providers do need a complete clinical history. But they will need to provide a written reason why they have overruled the areas you asked to be made confidential.

Your care record is secure, and only those who require access to it can access it. It is documented and audited. Medication is separate from consultation detailing, and I don't know if you can opt out of sharing medication.

Sharing of information is normally really clear. Speak to your surgery about what they share, and how to opt out. It is your right; and they will have lots of written information about it.

Respecting patients means ensuring they receive the best and most appropriate care. That involves knowing their history.

It doesn't mean allowing them to put themselves or HCPs at risk.

Only those who require access to it can access it

Yes, but who decides who requires access? The patient? No - that's the problem.

Respecting patients means not preventing them from making choices, not making choices on their behalf.

But pseudonym you haven't answered me. Do you have medical training? Do you know what information medics would need to treat you? How would you provide it if you were unable?

I have been working in health for over 10 years but I'm not sure I would be able to provide my full medical history if I was seriously ill.

But why should I have medical training to make a decision? This is the problem. Not allowing people to make decisions because you think you know better. How about I make my own decisions and take the risk that entails? Perhaps I would rather take the risk that someone might not have access to my history in order to protect my rights?

If it was possible to do what you want to do, you and HCPs would be at risk.

Is it just this you're so concerned about?. You realise the 'authorities' hold huge amounts of information on you don't you?.

Me and HCPs are currently at risk because I cannot do as I wish, which means that I will control what information I currently give the NHS

Records can only be accessed if you have a referral to the service. Staff then need not only to work for that service, but have relevant permission to view your record(s). I think it would be best for you to talk exactly what you do / don't want shared with your GP. They might have the same view and they will be able to explain policies and reasoning to you.

But Pseudonym, the GP has a duty of care to you. He/She needs to know your medical history for all sorts of reasons and might need to refer to that note about you being allergic to penicillin or breaking your arm when you were 12 if you present with pain where an arm was previously broken. You have to put trust in the medical profession. GPs and nurses are not allowed to read through medical records in their tea break and admin staff can be sacked for breaching patient confidentiality.

As others have said if there are factual inaccuracies then you can challenge those and get them deleted or altered. You can't just wipe out an entire medical history and wanting to do so would ring alarm bells with me were I the practice manager or GP.

You know care.data never actually happened, I assume. (Although I'm sure it will return at some point soon in a different guise).

It is your right to prevent your record from being shared, except for direct clinical communications related to your care. If you get referred to hospital it is necessary to share some information from your GP record to support that referral.

However, I agree that it is not simple to opt out of all secondary uses and other forms of data sharing. I would talk to your practice to ensure that all the necessary dissent flags are applied to your record. I would ask them for a list of all disclosures they have done (because to my knowledge practices share data for a number of reasons unconnected with central initiatives, for example, they will have specialist companies run algorithms on patient data to spot patients with symptoms of diabetes, or where the diabetes diagnosis hasn't been correctly recorded, partly to improve the quality of the record or the patient's care, but also partly because there's money to be made out of having a complete list of patients with some conditions).

I would just make sure you don't accidentally opt out of services you might want to use, such as screening.

How about if you were found unconscious at the side of the road. At the hospital your given penicillin even though your deadly allergic? You wouldn't be able to 'weigh up the risks' or make any decisions.