NHS Summary Care Record – have we done this?

The NHS in England is introducing the Summary Care Record, which will be used in emergency care. The record will contain information about any medicines you are taking, allergies you suffer from and any bad reactions to medicines you have had, to ensure those caring for you have enough information to treat you safely.

You can opt out if you so wish.

Thoughts?

Tehy are not having my info – should be an opt in however its better than the proposal to have all your records available for sharing

Sounds like a good idea in principle, will probably be a monumental government IT project omnishambles in practice.

The conspiracy theorists will be along in a minute to explain why it’s a bad idea though, I’m sure.

He beat me to it 🙂

Go on then TJ, why not?

I think we have done it.

On the selfish ‘how will this help me if i come into A&E in a right state’ note, I don’t see the problem.

With my professional hat on I can’t imagine it will make life worse for my patients. I did however wonder how much it cost out local trust to write to every last person on thier database about it.

I suppose the issue is about the use/misuse of data. A canny Trust could make a few bob out of selling this data, no? And a canny health insurer could errr, ‘optimise’ their premniums-to-payments ratio if they were to ‘stumble upon’ your summary care record too. 😕

I do not trust them with my data. simple as that. Its my data I wish to retain control of it.

Its also expensive

Expense aside (it would be an utter shambles, like I said), isn’t it data that they, or at least your GP, already has?

A canny Trust could make a few bob out of selling this data, no?

No, they’d lose money due to the heavy fines from the Information Commissioner’s Office and the civil suits from the public.

And a canny health insurer could errr, ‘optimise’ their premniums-to-payments ratio if they were to ‘stumble upon’ your summary care record too.

Again only if they were prepared to act illegally.

Leaving aside tin hat theories – I’m struggling to come up with a reason why not

I have no objection to the principle and think that going the whole hog with FULL computerised, central patient records would an enormous step forward in NHS efficiency (and potentially an incredibly useful database for research).

But the problem is the implementation: it’s a government IT contract and therefore will be an ultra-expensive clusterfrank that results in a unworkable system that everyone hates.

If your GP calls an ambulance for you (and if they are any good) they already print out a summary of your notes, including your name, address, DOB, Allergies, medical history, medications and last visit to GP. This has been the case for at least the last 8 years?

It kind of happens anyway..

You have a set of medical notes in the hospital you have attended, and your GP has a record of your attendances and medications.

The GP ends up with letters from the hospital detailing whatever treatments you have while an in or out patient.

If you are an inpatient for any length of time, a hospital doctor asks the GP for their info.

I presume the idea is to attempt to simplify the whole system to have pertinent info available where ever you turn up.

so far, so benign….

It’s the data security and the ability to access the data which is a potential problem. Trusts are quite strict about who views things now; I’ve had relatives treated in the hospital where I work and I didn’t go anywhere near any medical results or x-rays for anyone while they were in, because people have been disciplined for looking at results they shouldn’t have. But they still looked…

They could use the scottish emergency care summary which works perfectly

We have something similar in our ambs up here in Scotland. ECS I think. Need the Pt’s name date of birth and address, and we have to get permission from them to access it (or have a bloody good reason to) but its been handy for us.
Just has basic info on it- nok, medicines, allergies and gp practice..
Suprisingly useful for drunks, dementia Pts, the stupid, and even the unconscious pt if we can get some info from a wallet or something..
Re the comments about gps leaving full notes on a Pts history- that doesn’t always happen- some right dodgy ones working for nhs24 up here!
Edit- most aren’t “dodgy” but been to a few jobs where the Gp has made a right arse of things.

I do not trust them with my data.

aren’t you one of them? are you saying you’re not trustworthy?

Still I suppose some people are happy to be treate4d by a doctor who only knows some of their medical history and might not know that they are allergic to penicillin. Speaking for myself, I’m happy for any clinician who is coming anywhere near me to know as much as possible first.

Next they’ll be stealing my eggs.

Really? you’ve got eggs? Sure? when was the last time you looked?

Thanks for the replies, particularly from the medics.

In theory, it does sound sensible but I do have my concerns particularly as we are not able to see our own record although

you may want to add other details about your care to your Summary Card Record. This will only happen if you ask for the information to be included.

I therefore would question the accuracy of such a record especially for someone like myself who self-medicates.

Will opt out.

In theory, it does sound sensible but I do have my concerns particularly as we are not able to see our own record althou

I thought you were now able to ask for and see your records?

You can see your own record on the NHS healthspace web site.
or make a subject access request.

I’ve been carrying around info about my allergies for years. What’s the problem? I’d much rather someone knew about my allergy than die. I can be a bit odd like that.

I think if you are taking things that are not prescribed and therefore not recorded, it would be more important for that info to be available. We occasionally infer the existence of non-prescription drug use from physical appearance; I’m talking about steroid usage, but it would be better to actually know. You should receive treatment that is based on how you are, not how you should be; opiate addicts would get more in the way of opiates and so on.

I think an addition to your records that at least hints at ‘extra’ stuff would help.

A database in action yesterday…

http://www.guardian.co.uk/uk/2012/may/03/uk-border-agency-computer-failure?newsfeed=true

I opted out of having an SCR.

So ignoring that it’ll be 5 times over budget and never do what iut said it would do – but:

You opt out, and then get run over – you end up in A&E unable to communicate and then they give you something that you are allergic too, which if they had access to your data, they would know…

Hmm.

A database in action yesterday…

So do you think those people would be better if they were not on the UK Border Agency database and instead they had to go through a full background check every time they wanted to travel?

In fact that ably demonstrates the Border Agency cannot effectively do that job without the database.

I see it as proof that databases are far from infallible.

Thank God the ID cards were killed off!

You opt out, and then get run over – you end up in A&E unable to communicate and then they give you something that you are allergic too, which if they had access to your data, they would know…

Anyone that opts out is saying “I’m prepared to take that risk and and assume ALL responsibility of the consequences in order to protect my privacy”

I imagine it will come to a head when the family of a patient without an SCR try to sue a hospital trust for giving them penicillin.

Hasn’t this already been tried, and was a huge expensive IT failure that is costing millions to fix ??

(I was offered a juicy contract some years ago to work on this – I was keen – until I read about the project. I didn’t walk, I ran)

The DVLA sell all our details to parking enforcement companies. Its one end of the same continuum.

If you have a medical condition that emergency paramedics need to know about should you not wear a Medic Alert bracelet ?

I do not trust them with my data. simple as that. Its my data I wish to retain control of it.

But it is the same data you have given to your GP already, chances are it is held in an electronic database, it is simply feeding other medical systems with important information about your heath an wellbeing.

And yes, you can check your data first – CG, why opt out before you have checked your data, it will be data your GP already holds.

http://singletrackworld.com/forum/topic/now-whos-paranoid-cameron-plays-fast-and-loose-with-your-health-data

If you have a medical condition that emergency paramedics need to know about should you not wear a Medic Alert bracelet ?

Good plan – though not all that useful if they couldn’t find your arm after the car crash.

Perhaps have it tattooed on your forehead or something?
Or maybe people should be chipped like cats and dogs, that’d work and they’d still have control of their “data”.

Unless of course the chip was traumatically amputated along with your arm…

ohnohesback: good initiative that, nothing to do with SCR of course but hey ho.

Funnily enough your medical history is already used for research and teaching purposes by doctors. Have a read of any clinical audit in the BMJ for an example. Opening it up ANONYMOUSLY for research purposes makes a ton of sense.

Unless of course the chip was traumatically amputated along with your arm…

Chip in the back of the neck like a dog – if your head gets traumatically amputated then it doesn’t matter what you are allergic to.

The irony is of course that these people fretting about “privacy” probably happily have Facebook accounts, use Google and GMail, use credit cards and loyalty cards, carry mobile phones, drive around in cars, have insurance, have bank accounts etc etc

All of which involves giving huge chunks of personal data to private corporations so they can make more profits for their shareholders.

But for some reason they baulk at giving basic health information to a non-profit organisation who dedicate their lives to looking after their health. Weird.

Speak for yourself. I have very few of those things you mention.

GrahamS – there is a significant difference between “personal data” and “sensitive personal data”.

(for the record being a long time info-paranoic I have no FB Gmail or anything like that).

I accept that banks etc do need to know stuff like my name and address, but I never provide anything else unless in my view it is necessary to conduct the transaction.

Medical records are very different. There can be things in there that could cause people to make judgements, unfairly.

And if my arm was violently amputated in a bike crash I am not sure I would want the paramedics to know that feeding me cheese might kill me. Bring on the Gouda.

Speak for yourself. I have very few of those things you mention.

Really?

You don’t use email? Hmm.. surprised you can run a website[/url] without it.
You don’t use Google?
You don’t have a credit card, phone or car?
You don’t have any insurance?

The website isn’t run by me. Though I do moderate it. I use public computers wherever possible for the internet and similar. Insurance is kept to a minimum, I don’t drive, don’t have a credit card, and I use an unregistered PAYG SIM for my mobile.

GrahamS – there is a significant difference between “personal data” and “sensitive personal data”.

True, but what is “sensitive” though?

Your bank + credit card history reveals quite a lot about you. As would your Tesco clubcard or Boots card history.

Your life/home/car/travel/income insurance will also cover a fair bit, including very personal medical and financial details.

Medical records are very different. There can be things in there that could cause people to make judgements, unfairly.

Yes, but those people are doctors – people that need to “make judgements” for the benefit of your health, who you presumably intend to tell these things to anyway.

OR.. if you routinely avoid telling your doctor about embarrassing health conditions then they presumably won’t be in your notes anyway, never mind your Summary Care Record.