back to article Health minister asks elderly patients what they think of data-sharing

The NHS turned 65 today, which has led to some quarters drawing an unfavourable analogy between the health service and a patient who has just reached retirement age. It may be an irritating bit of anthropomorphism to describe the taxpayer-funded body as a living, breathing thing, but it doesn't stop ministers from questioning …

COMMENTS

This topic is closed for new posts.
Meh

Bah

Apart from the obvious problems with successive govmts wanting to expand the scope of where they can get money from this mine of information, I've no personal objection to my suitably anonymised medical information being used by private organisations to further proper medical research on the proviso that the info isn't sold like a second hand car, but licensed, and the license terms include some nice (and enforceable) words about derivative medicines/treatments get given back to the NHS (or even the world in general) on very favourable terms (which would need some clever wording to ensure companies can't wriggle out of it, too) .

The govmts track record of making such deals is a bit poor, though, so I have no confidence such a deal would be brokered. It is more likely to be the companies making the govmt pay for the database, then give it to them for free with no strings attached - personal data and all.

11
0

Re: Bah

And subsequently sold to insurance companies.

0
0
Silver badge

Brits to respond to those proposals?

Does the government want Brits to respond or just the Eglish and Welsh? Like many things, we have our own health system in Scotland but your article does not make it clear whether these propsals affect us or not. As usual.

1
2
Windows

Re: Brits to respond to those proposals?

Dunno. Try www.theregister.scot

1
1

Re: Brits to respond to those proposals?

Just the usual sloppy reporting ... sigh. Note that Wales has a separate NHS, and so does Northern Ireland.

It would help if they changed Hunt's job title to "Secretary of State for Health - England" and the name of the service to "English National Health Service".

1
0
Silver badge

Short and sweet

It is now seeking views from elderly patients

> What do you think are the main barriers to data sharing between services to support patient care?

The main barrier is the NHS's inability to and indifference towards keeping that data confidential.

> Can you highlight any examples of where data sharing to support patient care is happening effectively?

I'm a patient. How the hell could I possibly know. My doctor can't even explain what's wrong with me.

9
0
Anonymous Coward

We just new a 3 strike data loss rule

1st data loss the hospital chief gets the sack.

2nd data loss the regional yes man/woman gets the sack.

3rd data loss the cabinet minister gets the sack.

Any further less all three get the sack, they'll soon take data loss seriously.

And they don't get enhanced pensions and a nice party either.

12
0

Now seeking views from elderly patients....

"What do you think are the main barriers to data sharing between services to support patient care?"

"What's that, dear?"

"What do you think are the main barriers to data sharing between services to support patient care?"

"Sorry love, I'm a bit 'ard of hearing..."

"WHAT DO YOU THINK ARE THE MAIN BARRIERS TO DATA SHARING BETWEEN SERVICES TO SUPPORT PATIENT CARE?"

"Oooohhh, it's all them foreigner doctors and nurses, innit? I can't understand a word they says, and they probably don't understand each other neither."

"CAN YOU HIGHLIGHT ANY EXAMPLES OF WHERE DATA SHARING TO SUPPORT PATIENT CARE IS HAPPENING EFFECTIVELY?"

"Well, dear, that Mrs 'iggins next door was telling me the other day that she had a terrible tummy upset, rumblin' all the time and terrible dior.... dior.. she 'ad the runs. So I says to her "You 'ave a glass of port and brandy, my dear, and you'll be as right as rain in no time." So she did and her stomach's gone now, but now she keeps bumping into things all over the place and I can't understand a bleedin' word that she says."

4
1
Silver badge

ooh such a nice young man

And he is so polite and well spoken, and so clever and generous, what with all this about sharing these data things...

0
1
Mushroom

Back to trust!

Doctor - it's difficult for me but your data sharing is proving to be a right pain in the ass? I guess I can't stop it so I expect a cheque off the Gov. when they profit from my info regardless - will that make it go away? NSA - the flames are cause I had a bad curry last night;

0
0
Thumb Down

Elderly does not mean disabled

I know "It's Friday" so have a laugh, always look on the bright side etc, etc...

Still joking that all elderly are deaf/stupid/tech illiterate etc,etc are cheap shots that just devalue humour...

0
1
Anonymous Coward

Re: Elderly does not mean disabled

Why does it's Friday need to go in quotation marks? Who are you quoting?

0
0
Thumb Up

Re: Elderly does not mean disabled

That may be so, Dr Mour. But if you want more than cheap shots from me then you'll have to go private.

3
0
WTF?

whut?

I dont get the issue.

"Data sharing WITHIN the NHS" ?

"Data sharing between services" ?

When I shop at amazon and give them my details it never occurred to me that the billing dept might withhold my address from the shipping department.

I'd like to know if those 750,000 that said 'no' understood what they were saying no to.

Surely If you want help from the NHS the least you could do is let them write down your phone number and pass that to WHICHEVER member of staff needs it to help you.

They dont seem to be very good at this however. I went to a drop in centre the other week for stitches - they had my address , and confirmed it was current. I went to a different drop in centre a week later - they had an address from 20 years ago. The marvels of technology eh?

This despite them spending a couple of billion over the past 5 years on some kind of "I.T. system"

0
1
Thumb Up

Re: whut?

Point is I'd like to trust the NHS - they did save my wee life a few weeks after I was born so bah on private profit or trough politician bollocks. Also - If google tracked every event when you went to the doctors how would you feel?

1
0
Thumb Down

Re: whut?

Oh hi Mark 63, as someone who actually works for the NHS rather than pontificating from my sofa here's a bit of a wake up call bizarrely the various bits of the NHS aren't allowed to share data due to information governance rules put in place to keep the tin foil hatters in the world happy......... Yup as an analyst trying to improve the chances of you surviving your inevitable emergency admission at near the endpoint of your life I'm not allowed to string together all the various events that happen to patients to work out how we improve the service and reduce mortality rates. From your point of view every time you contact whatever part of the NHS you speak to they will have no idea of whats happened when you've contacted other bits of the service, joys of cutting the NHS into separate legal entities and paranoia about IG.... Nottalottapeopleknowthat...

0
0
Silver badge

@Lord of Cheese

I get where you're coming from, but it isn't the "tinfoil hatters" that are your problem. It's the weasel politicians who have shares in the IT and pharmaceutical companies, who want to violate everyone's privacy while being seen to be doing something about protecting it.

You see, most people rightly say something like "I want the NHS to be able to share my data with my doctors and personal carers, but not to be able to sell it to pharmaceutical corporations." Now some slimy pollie who owns shares in said IT and pharmaceutical companies doesn't want this, so he draws up some convoluted sneakily-worded claptrap bill about privacy protection that, at a casual reading, looks like it does what people want, but in reality does the exact opposite; viz. preventing data sharing between the NHS and doctors (which makes it look like privacy is being protected) while still allowing them to sell it to pharmaceutical companies (thus filling said slimy pollie's pockets.)

So people who want their privacy protected from commercial exploitation cop the blame as "tinfoil-hatters", while the real culprits, the thieving crooks who call themselves a government, come across as trying their very best to make the opposing requirements of privacy and expediency meet in the middle, while in reality they're using weasel tactics to pass twisted laws enabling them to fill their pockets with the profits from sale of our data.

And the end result is that people like yourself, who are trying to do your job as effectively as possible, are hampered at every turn by convoluted and corrupted legislation contrived to make it look like the pollies are doing the right thing, all the while letting them continue to get away with the very exploitation the public demanded this legislation to prevent.

2
0
Facepalm

Re: whut?

so the right hand is not allowed to know what the left is doing?

great

0
0
Bronze badge

I would love this to work properly, not just for someone to go on the make.

As I am probably one of those now about to be asked since I am over 65 by several years I feel it is high time that a GOOD, RELIABLE system was in place. That way people like my youngest daughter would not have been prescribed something to which people with one of her other conditions have been found to be abnormally reactive. It might not have taken a private appointment to find the cause if the RIGHT data was on the IT system on which so much money has been spent. Sadly GPs still do not have access to the full data set of known problems and interactions and fumble about in the dark. 25 years ago I knew a retired GP who worked with a team on a computer diagnosis system. He told me that even with the then primitive systems they reached a situation where their programme made diagnostic suggestions that were orders of magnitude better than most doctors - simply because it never forgot to ask the right questions and check the patient's treatment and diagnostic history. Clearly that one flew so well it never saw the light of day.

If we could improve diagnostic processes, costs and errors prevented would save a great deal of money and time. - It took ten years to diagnose my condition accurately and a couple of months to operate and resolve the problem. Sadly ten years of wasted medicine has seen other problems get exacerbated so I still pop more pills than I want and still suffer more pains and limitation than I should.

So I am guardedly in favour but I want more than a few warm words, I want an assurance of reaction.

(My daughter studied a branch of medical science, a nasty little secret is that the efficacy of many treatments depends on your genetic make up. To a limited extent this can relate to racial or ethnic background as some ethnic groups have gained or lost the ability to metabolise some classes of compounds. - A bit like the fact that cats are said to never sober up if they drink alcohol or hamsters find antibiotics lethal. However, this problem with some types of medicines cannot be openly discussed, least of all with patients, due to its risk of racial overtones. How is that going to be handled? Ignored as usual?)

1
0
Silver badge

" He told me that even with the then primitive systems they reached a situation where their programme made diagnostic suggestions that were orders of magnitude better than most doctors - .... Clearly that one flew so well it never saw the light of day."

Well of course not.

Curious how, for an originally scientific activity, medicine seems now to be one of the most resistant trades to automation, big data, smart science and smart technology. Not all of those involved (indeed, probably a minority), but why the hell is the NHS bothering to ASK people about sharing anonymised data? If it's anonymous, JFDI.

Why don't we have a decent health information system? Why do GP's (as in your example) not use automation, and then add their expertise by doing the things a computer can't? Why do I need a paper prescription, and why can't the doctor's prescription system check the stock at local pharmacies? Why do too many patients seem to know more about their condition than their GP? Why is the interaction of drugs still so poorly understood?

Bloody health service. I'd go private if I had the money.

1
0

It is not just about the data

On the whole the public have no great faith in the government these days. They have good reason no to. Recently census data, by law kept secret for 100 years, was revealed early because of lawsuits by a persistent troublemaker. We all know that government staff have lost confidential citizen data, and their attitude to data security often seems cavalier. A key indicator here is the law. The amount of money available for legal aid is being reduced, in part because the public sector is facing so many lawsuits brought by aggrieved citizens.

Do I trust the gummint with my personal data - no i don't. Look at the plans for ID card data, which were going to made freely available to the fuzz, spies and tax collectors. The only person who was not going to know who had been looking at my data was, er, me.

When it comes to the widespread accessibility of medical data the medical profession itself sees less benefit in having patients' data instantly available in, say, A & E, than you might think. This is largely because, if you are dealing with the aftermath of an accident, there are not too many choices as to what to do. If you are not dealing with an accident then usually the patient can give a current picture of relevant medications and physical condition. Online patient records have a nasty habit of being out of date or just plain incorrect.

A paperless NHS is not an error-free NHS, nor does it relieve the treating doctor of using his senses at first hand. Look, touch, feel are still important.

1
0
This topic is closed for new posts.

Forums