De-registered patient and medical records

[Pseudonym99]

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

For goodness sakyes of course they are clinical systems but there are also "closed" groups online some for GP general as well as "closed" groups for the clinical systems.

Like the EMIS National User Group?

What possible interest would an IT system user group be to someone who is not a user of the system??

The groups are closed as they are run by the systems suppliers. They use these forums to gain information about what new functionality and features their users require and share information with them about forthcoming updates. No commercial software developer would share this type of information outside of their user base.

Some people could find a conspiracy theory in a bucket.

Problem with GP reimbursement is it is all data collection which is then shared. There is no fair processing under DPA, GMC guidelines re telling patients about financial incentives etc ignored and Montgomery judgement all these failures contribute amongst other data sharing to leave OP without access to medical care. It amazes and shocks me but does not surprise me that GPs and associated clinical/primary care staff are on here trying to adjust that this is a patients interests. Going completely against the NHS mantra on transparency and shared decision making/patient centred care and also ignoring that by not informing patients they may be acting unlawfully.

Look at the groups. Its all about income generation through Read codong but patients are not told the reasons why data is gathered.

Emisnug is one but there are unofficial groups that are closed and run by GPs rather than system suppliers. The closed GP groups are vile.

He be you never heard of payment by results or the NHS internal market? You sound very uninformed about healthcare commissioning in general.

Yes and this fine but not at the expense of patients like OP and NOT without consent. Its payment by results that operates on SUS/HES data which are then sold without consent. Can someone please tell you both yourself and Argy think its okay not inform patients what is going on?

I don't think anyone but you and other tinfoil haters care. It's really all very dull and boring.

Its not hating its about caring for patients and making sure they are informed and consenting. It is no wonder patients like Pseudonym 99 suffer immense distress when they encounter these problems. So sorry Pseudonym 99 that this potentially unlawful attitude against consent and transparency prevails amongst HCPs/staff in this day and age.

There's some very confused thinking on this s thread. Still not understanding what is preventing OP from accessing healthcare other than paranoia.

How many times have you mentioned the "Montgomery case" Tipsy ? Not sure if you're doing it to try to put some weight behind your argument, remember "Montgomery" is a person with a disabled child. Not some faceless legislation for you to bang on about.

The case wasn't brought about because of paranoia or because of record sharing. Whilst it absolutely does change the landscape of consent including that relating to the use and sharing of records, it seems as though you are trying to imply that it sits alongside GMC guidance and the DPA. It doesn't.

Why confused? The way data shared is complex. DH have acknowledged in the past it is possibly unlawful. We are only picking up snippets of how its shared in the thread. Its a hugely complex issue. OP Pseudonym 99 is not paranoid by not wanting her records shared. These are valid concerns and have been acknowledged by the DH as well as in the Parliamentary Health Select Conmitte by Barbara Keeley MP in relation to Helen's case as being so valid her case reached 10 Downing St. I have been good enough to respond and answer your questions. Could you do me the same courtesy and explain why you are against patients having full transparency regarding how this very complex operates?

It as I have previously said be is multifaceted and a complex issue. The clinical details a around her case are not relevant but the judgement is extremely relevant. It does most definitely changes the landscape. It does sit alongside as consent and confidentiality are closely related. Without consent for a procedure, no procedure could take place and you would have no data.

Without consent for a procedure, no procedure could take place and you would have no data

Wrong. If someone doesn't attend (for example) a smear test, that refusal is recorded, and if you get cervical cancer that is then collated by researchers without your consent. You cannot win. Data is collected about you by the NHS without your knowledge and consent regardless of whether you engage with them or not

Absolutely true in the caseof screening which is why consent is needed when joining a GP Practice. Pseudonym 99 google GMS1 the form you complete when registering with a GP Surgery zero consent whereas financial institutions allow you to opt out of being contacted for related services eg opening a saving account. There is no fair processing under the DPA re the NHS. All these issues are very closely related eg consent, DPA and GMC regulations.

Pseudonym 99 you can opt out of Cancer Registration again unless a patient really diggs the NHS withholds this information from patients. I am NOT anti GPs or the NHS but the whole system is an utter disgrace. There is no transparency or consent.

Yes. But if you're in a position where you might be wanting to opt out of cancer registration, you're going to have more worrying things on your mind, so won't be looking into such things. Therefore the NHS are taking advantage of your vulnerability.

I've just Googled the GSM1 form - there's zero information on there about data sharing, let alone consent or opting out of it. It would appear that is a deliberate act to illegally obtain, process and share sensitive data.

Absolutely and completely agree with you Pseudonym 99

But you don't just get that form in isolation (or shouldn't). I also googled that form, as it's not one I'm familiar with, and on every surgery website I clicked on (to be fair I didn't try them all but it was a random selection), I found on the same page a document about data sharing, and in each one it explained that you can opt out.

That is only opt for he Summary Care Record and the old Care Data which is currently being reinvented that is not what we are talking about. If you read the thread there is a mass of other things that are incredibly hard or impossible to opt out. It was Helen pushing her case that won the Summary Care Record they were trying to saying no opt out for that too but Helen won that small element. It is a hugely complex area and a complete mess/disgrace.

The one I clicked on (sorry on a mobile, so cannot link) was for Langley Surgery in Surbiton. It goes on about something called 'LINK', which it has a form to opt out of, but says LINK is 'completely anonymous'. But you then go and Google LINK and you find it is pseudonymous. In my book, 'completely anonymous' means just that. Pseudonymous means although any directly identifying information has been swapped for a number or something, information is still identifiable. I think staff working for the NHS are being hoodwinked, and are claiming things are anonymous because that is what the brainwashers are telling them, when in fact they are not anonymous.

Spot on Pseudonym 99

Perhaps the NHS should start again with resee,beginning with the truth and consent. If they had done that five years ago perhaps we'd be well on the way to curing cancer by now. But by playing at being God we'll all have to wait