care.data

[Alan H]

Latest post of the previous page:

Also, since the post code will be included in "pseudonymised" data; a listener to PM today said that they lived in an area where many houses had a unique post code, too separated for street codes, so they would be very easily identified.

I will admit to being ambivalent here. I very much agree that data mining can be a huge benefit but, as has been reiterated many times, there are not enough iron clad safeguards.

And I would not trust any government in this instance - there would have to be a totally independent regulator, with the full backing of law behind it, for this alone.

The elephant in the room is that (I suspect) this kind of data are invaluable when the Tories (or whoever) want to take privatisation of the NHS to the next level. I can't be sure of how, what and when but it is a concern that has to be addressed.

[Fia]

Margaret McCartney in the bmj: Care.data: why are Scotland and Wales doing it differently?

From that link:

So why has NHS England done things differently? A spokesperson for NHS England told me that because “organisations across these different care settings use different information sources, pseudonymisation at source is not currently possible.”
But Scotland plans to do it, and Wales already does, so why is it not possible in England? And why was a law passed in England that allows for fully identifiable data to be made available to researchers without individual consent, when this will not be allowed in Scotland or Wales?

Therefore it doesn't seem rocket science to provide the properly pseudonymous data that is mightily useful for legitimate health research.

Therefore I agree that the elephant in the room is yet more English NHS privatisation. Without proper pseudonymisation that data is valuable to many organisations who have profit, rather than care, as the main motive.

[lewist]

Did you notice when Call Me Dave spoke at the London olympic stadium telling us about the wonderful UK institutions we would lose with independence? He mentioned the NHS!

Dave, you twat! You don't seem to be aware that we have our own quite separate NHS which works fine. We don't want yours.

[Alan H]

Care dot data with some examples of what will and what will not be extracted (currently, at least).

[Alan H]

Holy shit! If this is correct, care.data - in its present incarnation - must now be dead in the water: Hospital records of all NHS patients sold to insurers

Those in charge of the programme have repeatedly insisted that it will be illegal for information extracted from GP files to be sold to insurers, who might seek to target customers or put up their prices.

However, a report by a major UK insurance society discloses that it was able to obtain 13 years of hospital data – covering 47 million patients – in order to help companies “refine” their premiums.

As a result they recommended an increase in the costs of policies for thousands of customers last year. The report by the Staple Inn Actuarial Society – a major organisation for UK insurers – details how it was able to use NHS data covering all hospital in-patient stays between 1997 and 2010 to track the medical histories of patients, identified by date of birth and postcode.

It boasts that “uniquely” they were able to combine these details with information from credit ratings agencies, such as Experian, which record the lifestyle habits of milllions of consumers.

The calculations were used to advise companies how to refine their premiums, resulting in increased premiums for most customers below the age of 50, according to the report dated last March.

[Alan H]

It looks like the Torygraph article might have been spinning this a bit (surely not, I hear you say!), but there are some bald facts that can only embarrassing to the Government.

[Dave B]

Do you think this ideologically patronising bunch of Hooray Henries is capable of feeling embarrassment?

[Alan H]

Do you think this ideologically patronising bunch of Hooray Henries is capable of feeling embarrassment?

Don't be stupid.

[Alan H]

In the days before the Internet, we used to have to wait for the following Sunday's papers to read a well-researched, well-written piece of journalism on some topic or other that broke during the week. Now, it's almost instantaneous...

This is good, very good: Care.data and the community…

It has only just occurred to be: is the name care.data deliberately chosen to give us some kind of warn fuzzy feeling about it? After all, who could possibly object to helping care.data? But this is not about our care or even about our health - certainly not directly, anyway - but about using health data for several other (as yet, not entirely clear) purposes. So, why wasn't it called health.data or something more descriptive? Marketing purposes, anyone?

[Alan H]

Statement on use of Hospital Episode Statistics (HES) data by the HSCIC.

But possibly more revealing in what they don't say.

[Alan H]

Medical records rules broken, NHS admits

[The data] was handed over in January 2012 and the Institute paid £2,220 to cover the Information Centre's costs in compiling the data.

[The HSCIC] said it would publish details of the bodies to whom it supplied such data later this year.

Why? Are they on holiday tomorrow?

[Alan H]

Firm linked to drug makers sought pact on access to patient records database

One of the key questions is likely to be how patient privacy will be protected given that, under the scheme, data from GP records – including children's mental health diagnoses, family histories and drugs prescribed, as well as smoking and drinking habits – would be sold to public and private research organisations, commercial companies, universities and "information intermediaries".

This refers to the HoC Health Selecty Committee meeting tomorrow: care.data database

[Alan H]

Having just watched the two sessions of the somewhat heated HoC Health Select Committee lasting three hours (the recording is available for anyone to watch), it is clear that the serious concerns voiced by those in the first session were not answered by those in charge care.data who formed the panel in the second session. The overwhelming impression was that Dr Dan Poulter, Tim Kelsey and Max Jones, thought the problems were no more than a bit of poor communications that could be easily rectified.

It was good to see several Tory MPs, particularly Dr Sarah Wollaston laying into Poulter and the HSCIC, but the best question of the day went to Labour's Rosie Cooper. Some GP data are not uploaded to the HSCIC including whether a woman had had a termination, HIV/AIDS status and a few others. While this might seem sensible, she asked the question why? Why, if our health data is as secure as we are being assured it is, are these excluded? Lots of waving of hands later, I'm none the wiser.

But there were many highly embarrassing questions asked with more squirming than in a can of worms (puns carefully and deliberately mixed) - it'll be interesting to see the writeups of this and newspaper reports. But more importantly, whether anyone loses their job over it and what the HSCIC decide to do in this six-month pause. Do I expect them to make the changes necessary to assure the public? No, I don't.

Two things that were only just touched on and not adequately answered (the herd of elephants in the room): can the data be used by, say the DWP to determine someone's ability to work or is it part of the move to yet further privatisation of the NHS. No answer seemed to categorically exclude either.

[Alan H]

This highlights some of the issues: Is selling our medical data to insurers a crime - or not?

One might argue that directing the HSCIC to hand over data to an insurance company is not obviously “in the interests of the health service” (or patients) [the (approximate) wording used in the H&SC Act]. But could it be considered so by a Secretary of State minded to expose the NHS to market forces and endless “fundamental change”? Stranger things have happened.

[Alan H]

A letter in The Times from Professor Sir Brian Jarman:

2014-02-26_20h41_20.png (1.11 MiB) Viewed 3199 times

[Altfish]

As a matter of interest did anyone on here get the leaflet that they are saying was posted?

[Alan H]

As a matter of interest did anyone on here get the leaflet that they are saying was posted?

We didn't. We are opted out of the Royal Mail's junk mail delivery and, because the leaflet didn't meet the Royal Mail's criteria for important information, it could not bypass this and we never got the leaflet. Which is odd as we still occasionally get other junk mail from the Royal Mail...

Yet another flaw in the care.data plan...

[Altfish]

I can't say that we got it, but I can't say we didn't.
All those leaflets be they for pizzas, Chinese take-aways, etc. go straight into recycling without being read.

[Dave B]

I certainly have no memory of it, but I complicated things a bit . . .

I have a nicely printed poster on the door that says, "NO leaflets, fliers, freebie papers, menus . . . .THANK YOU" t also says, "or anything not actually addressed to this number".

This stops a lot of stuff coming in but I also miss things I would rather have had (but a friend passes these on to me). Our regular postie, Neil, nice lad, knows not to bother putting the stuff in but the stand-in posties often do.

So, if Neil had it to deliver he would not have done so to me! I can't honestly blame the system on this one.

[Alan H]

Ben Goldacre wrote about this last week: The NHS plan to share our medical data can save lives – but must be done right

And again today: Care.data is in chaos. It breaks my heart

[Alan H]

NHS England patient data 'uploaded to Google servers', Tory MP says

This was the current HES (Hospital Episode Statistics) data that has been around for a long time - but I do wonder who knew about it? There should no problem per se about uploading data to Google because some or all of their services are registered under the US Safe Harbor scheme to provide data protection equivalent to that required in Europe, but this still raises important issues and is another embarrassment to the Government.