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'm not going to give any details! Not worth deleting your records over, though IMO.

" If any member of staff at a GPs surgery acknowledges or disclosed that someone they know has been to the practice that is a breach of confidentiality "

That must be quite recent, because a nurse told people I knew I'd been to the surgery and her husband told me they're allowed to say you've been, just not what it was for. That's fine for the GP, but if you've gone to the gynaecology unit or something that could be enough to make people think you've had a termination or something so I'd hope that in that case, they wouldn't even say you'd been there. Of course, you can never be sure you won't bump into someone you know.

Gwen, I haven't been doing the job for very long but I am shocked that the nurse did this to you. Who is her husband? Appalling behaviour by the nurse, she should never have told anyone you were in the surgery. If that had been me I would have been very upset.

Many people on this thread seem to be quite ignorant of how the NHS works. The only records that travel with you are your GP records and these are very rarely accessible from any hospital. If you attend a hospital the records about your visit stay within that hospital, with discharge or outpatient summary letters going back to your GP. If you then go to a different hospital 20 miles away you will start with a blank sheet unless you have previously attended there. The OP could just turn up at A&Es all over England if she wanted to remain semi-anonymous. Why people think they are so interesting to others is beyond me. Fakename's "thing" she doesn't want known is probably really dull.

ArgyMargy

I think you're wrong. You have the HES, where any hospital attendance records are sent to the central NHS records to be used as they see fit

I think the point is that the clinical staff in the ground don't have access to records of previous visits to other hospitals.

intheknickersoftime - it was about 15 years ago and when I asked her husband, with whom I worked, he told me they were allowed to say who visited the surgery, just not why. Didn't bother me that he knew I'd been there - it was for a checkup when I'd just joined the surgery, something I haven't received from any GP in the last few years. Has the rule changed recently or was she really wrong to do that.
The thing is, anyone you know can you see you go in, at the surgery, or come out anyway...

"The OP could just turn up at A&Es all over England "

Well, only if she has an emergency issue surely. Otherwise she'll be told to go to a GP surely.

It is a breach of confidentiality to tell someone a patient is registered with a surgery, let alone what they're being seen for

I don't know about changes in rules Gwen, but my gut tells me that the nurse was in the wrong here. Maybe someone else would be able to answer.

I can't believe it would ever be okay to divulge and information about who you have seen unless it was to a colleague for professional reasons

I work in a small practice where the population is very isolated, I know many of those registered socially. I can honestly say I would never mention them being my pt although I am always surprised how many share in group situations that they have seen me.

on this basis you could a husband that a wife had been your pt...what if she did want her husband to know .

Any not and

Grr so many typos but I think my gist is clear...

I know I said I was out but I can't bear stupidity being spread as fact.

Hospital Episode Statistic (HES) data is fully pseudonymised so it is not traceable back to the patient. It is not a shared patient record it is a dry collection of data items for secondary uses (commissioning etc) and is not available to clinicians who would find it of no use anyway.

http://content.digital.nhs.uk/hes-

Wrong it can be traced back. See medconfidential website for info. Through a medical website health unlocked I discovered which of my neighbours had thyroid disease through the first 4 digits of our postcode! Also if old NHS number is attached to SUS/HES then as in Helen's case the record included full name, date of birth, GP details and address. Her records wrongly labelled her as an alcoholic too as someone had typed in the wrong clinic code at UCLH.

Pseudonymised can be traced back. That is the whole point of it being Pseudonymised . And it also means it will be linked with records from other locations. The NHS call it anonymised - but it isn't, its pseudonymised. Whenever the NHS say something is anonymous, they are lying. Do not trust them.

It is rare for secondary uses data to get such an airing on Mumsnet I must say.

Argy is right in that primary clinical records aren't shared very much (more than not at all, in some places, depends on what systems you are using). Episode information is submitted for secondary uses, from billing and service planning to research, workforce planning and casemix.

HES/SUS is identifiable. However, I have already linked to the Data Access Request Service which gives details of the scrutiny required for anyone to request an identifiable extract. Most users of the data do not require it to be identifiable.

I believe that DARS was set up in response to a story I have already linked to above, in which the Information Centre was found to have breached the rules on sharing identifiable data.

The problem of reidentification of small record sets is real.

All of which highlights what has been said in a report I really cannot be arsed linking to yet again, which is the public need to have the opportunity to be informed. Most members of the public, as evidenced on this thread, are happy for their data to be shared both in support of their own care and in the secondary functions of the NHS. Some are not. Both groups need to have reasonable allowances made for their wishes to be respected.

I genuinely hope most posters on this thread have learnt something and I think it's been very useful in this regard. I would say that anecdote is not evidence and privacy concerns may appear more real when backed up by fact.

Helen's case is not antecodotal it is widely published in the press. There has been a Parliamentary Adjournment Debate about it and its mentioned several other times in Hansard. Most Primary Care electronic records can be accessed outside the Surgery SytemOne, Emis and INPS being the main players.

Medconfidential founds DARS were only given a few approvals a large majority of the times DARS were not being consulted. This is why Medconfidential broke the story to the press re medical records being effectively sold. DH back in 2007 or thereabouts got Panorama programme pulled/amended after it had bern filmed. Although Helen, I believe, got the story front page Sunday Telegraph back in around 2008. It has only really been in the public domain in the last 2 years.

Tribpot - it appears you may work for NHS Digital, the DH or NHSE? These issues need more action than a Consultations in my experience they are merely a PR exercise. It seems the powers above may well read Mumsnet!

Tribpot- I have been reminded Barbara Keeley Labour MP in the Parliamentary Health Select Committee 2 years ago challenged Tim Kelsey re Helen's case. Tim said there had never been a problem with SUS/HES. Barbara Keeley reminded him of Helen's case and informed the Committee it had reached 10 Downing Street.

Ur records are sent back to the health authority I live in haringey and our central office is now in the north of England I think Preston when u register with a new gp they will be sent there I know this as it's my job at work to do all deductions and do this

Tribpot- If you had put a system in place to ensure Helen, and the other patients that have followed her like OP could access NHS car, the likes of Medconfidential would never have been created and your current work would not be constantly overshadowed by the debate. OP you are not alone many more patients have the same issues.

There are so many sides to this that I am now confused as to how much sharing actually occurs and to whom.

Disregarding the scaremongering from some posters can someone who actually knows how it works clarify who has access to what data (without acronyms please)

@Tipsycat: are you saying that the healthlocked website had HES data that they made available for Jo Public to search thru? Or did a forum user of HealthUnlocked publish some HES data on HealthUnlocked?

It sounds like someone published data on HealthUnlocked that they weren't allowed to publish at all. I thought that action would mean prosecution under Data Protection act.