UK.gov's hated Care.data project binned The controversial Care.data patient information-sharing scheme has today been binned. The closure of the scheme was announced in a statement by minister for life sciences George Freeman MP. It follows a review by the National Data Guardian Fiona Caldicott which recommended better safeguards for the sharing of patient data. …
"Therefore this work will now be taken forward by the National Information Board, in close collaboration with the primary care community, in order to retain public confidence and to drive better care for patients."
Translation: "We're going to carry on with the project and just not tell you about it, so you can't get all arsey"
Not even close, sorry.
The quote is usually attributed to Albert Einstein - but there is some reasonable doubt about it.
And Hitler was an Austrian.
No. Just No.
Whilst I really do appreciate the benefits that can be gained both to some individuals (the patients I mean, not just "managers") and the population as a whole by using data properly for a range of purposes, given the issues around protection of data, patients should be required to specifically opt in if they want their data used for anything other than direct delivery of healthcare.
Even then proper anonymisation needs to be thought through, although I can see the use of being able to contact people found in some unrelated test for freckles to have "gene xyz" if it is suddenly later found that having gene xyz and walking on the cracks in the pavement during a full moon leads to suddenly going blonde (that's not a typo), so it is a toughy. maybe some sort of means of contacting people to say "we think you might want us to be able to check and discuss something, can we have your permission to unlock the account" (and yes, then there are issues for those without the capacity to make that decision) would be useful.
But on the whole "opt out"? Well, I can foresee that if I get treated in some casualty unit 150 miles from home, that if I don't re-tick the box on a form I might not actually see on the receptionist's terminal then my consent is suddenly assumed to be in place again.
Which particular one did you mean? The one with the MDR infections.. Or the one with the monumentally poor cancer care? Or the one with the nurses that think once you're over the age of 80 you need to be treated like a patient of Dr Mengele so you can recall happy memories of times gone by..
As far as I can tell the NHS reflects a mixture of the monkey dust "Porton Down" and "NHS" sketches.. And a fair percentage of patients would make extras for the "breakfast fatties" sketch. Look them up - you won't know whether to laugh or contemplate suicide.
Toodles...
I can kind of see the original idea. Giving scientists access to the medical records of an entire population would surely lead to advances in medical knowledge (that new drug you're taking for $disease, you'll be lucky if it's been tested on more than 100 people). However, there's really obvious privacy implications.
How can people's data be anonymised enough that they can stay private, but still be useful for research?
"How can people's data be anonymised enough that they can stay private, but still be useful for research?"
Probably they can't. Whilst there may be things you can discover about broad swathes of the population, the majority of discoveries (especially as we get down to genetic medicine) probably are useful precisely because they identify a small subset of the population. There's a whole class of serendipitous findings that are particularly likely to be based on data that clearly identifies individuals, found by going on a fishing expedition in the national dataset.
On the other hand, any such discoveries are likely to be biased towards the people whose records were used in the research and the youngsters don't seem to give a toss about living their entire lives on social media. Perhaps *they* could be persuaded to opt-in.
It's a cultural thing, though. Iceland is a centre for this kind of research because they've chosen to allow it and deal with the consequences. Likewise, outside of the health sphere, some countries publish full tax records for the population whereas I'm fairly sure that the older generation in the UK think that's only one step away from publishing nude selfies.
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"However, the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients."
Yup, the project will be rebooted. This is the true neverendum.
Government speak. They have their own language. I commented on it many years ago when I sent a two page letter of complaint to the CSA pointing out why they can't refer to me as a "customer" in their correspondence. When I requested a copy of the data they held on me some years later, (yes an ongoing dispute that has still never been resolved), I noticed that they had made comments on my file following the letter describing me as "a belligerent nit-picker whose comments should be disregarded as being irrelevant to the case at hand". Which is odd because they wouldn't stop harassing me and allow the mediated and mutually agreed "informal" arrangement I had made and had ratified through the court stand - I thought a "customer" was someone who had engaged the services of a professional when I had neither engaged them or considered their approach professional.
TL;DR version... the government have their own language which is desperately at odds with the general understanding of a word's meaning.
"However, the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients."
I assume I'm not the only one that read "remain absolutely committed to realising the benefits" as "finding a way to get money out of this" on here.
Here is a sample standard letter for restriction of medical records sharing, created when this scheme was first proposed. It might still be of use.
"I absolutely prohibit in perpetuity any sharing of my medical records with any person, other legal entity or agency, except in the specific cases of [1] access to my records with my explicit consent or exclusively for therapeutic purposes in support of treatment of a medical condition with which I present or [2] where required without the option by statute or order of the Court.
For avoidance of doubt, this prohibition applies to any current or proposed scheme of medical records sharing envisaged or planned at the date of this letter and equally to any plan or scheme of medical records sharing to be conceived, invented or proposed at any time in the future."
I have lost count of the number of times I have written to my GP to make it clear that I do not want my medical records to be 'shared' (which I naturally take to mean either 'sold to the highest bidder' or 'used covertly for some repellent social-engineering purpose', or possibly both).
Every time the government changes the scheme's name one's objection appears to be reset; presumably they hope eventually to wear people down or catch them out.
There have been some comments, presumably from collectivists, which suggest (as did the Telegraph article, which is a fine example of ruling class tops-downism) that we the people are no more than the livestock of the state, to be dealt as the farmers see fit, and that the NHS must 'crack down on hysterics' who don't like their data being 'shared'.
To those people I would say: you belong in East Germany in the 1970s; the world is shaking off your curse, and the harm that you can still do is steadily diminishing, together with your relevance.
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