Brits still not happy about commercial companies using their healthcare data

In the original care.data it was like a vogon constructer fleet had arrived and given instructions on how to stop your data going by putting it in triplicate (double to be fair but triplicate sounds better) and posting it to your G.P. then telling you that if you don't or your G.P. doesn't add it to your notes in time then it's tough luck and you can't get it removed after the fact.

To be fair my G.P. was actively pushing people to fill in the forms, why would a seasoned doctor be actively pushing his patients to opt out of something that is supposed to be of benefit to his patients?

That is why I have no faith or trust in what the information is going to be used for or how it will be handled.

I wonder what wonderful opt out scheme we'll get this time? That's if we get one.

One of the reasons people are so wary, is because a single cock-up can mean the entire game is lost. There will be continual pressure to mine anonymised data for value and continual opportunity to fail to identify a vector that yields a way to de-anonymise the data (if you think it is easy to anonymise data, search for one of the many articles that show why it is a much harder problem than many realise). We always have to trust the anonymisation strategy is sufficiently thought through. If ever it isn't and the designated anonymiser is left thinking, "damn that's clever, I didn't think of that." It's a bust.

For that reason, I'm definitely in the 17% category. Even for research. I would want the option to opt in and would only do so after being information about the data mapping that is done during anonymisation and would only do so for research I want to support. Research also, let's not forget, is conducted by commercial companies.

No, just no.

Anonymising just isn't happening in the first place. OK, no names and addresses are being handed out, but given a post code, gender, ethnicity and age (even rounded to decade), it is possible in a lot of cases to identify individuals. For many studies, some or all of this information is irrelevant and hence what fields are actually made available need to be made available on a 'need to know' basis. For example, an epidemiological study may require postcodes to determine an epicentre. My other main concern is who this data is made available to. It is bad enough that Councils make money flogging their (compulsory) electoral register to anyone, imagine what the PPI cold-calling scumbags would latch onto next if they could get hold of medical data.

I would have no objection to NHS accredited research organisations receiving PROPERLY anonymised and redacted medical data. And therein lies the rub, I have no confidence in it being done PROPERLY.

Anyone who says "I don't mind companies using my data because it helps improve service" is a corporate STOOGE.

Make it opt-in

Then see what you have to do to get people to opt-in.

I really struggle with how any of this can be legal. At no point have I ever consented to this. Ignoring data protection there's basic confidentiality (see the BMA website) and centuries of common law.

Any doctor sharing data for non-treatment purposes has got to be in breach of basic medical ethics.

I guess the GMC must be in bed with the government somehow.

How about

we talk about how much these third parties will be paying me for my data, irrespective of who it's held by?

Nothing you say?

Well then I guess they can't have any access to it at all.

Data is real

Ask Henrietta Lacks relatives how they feel about the medical community and business profiting from her "donations"

Trust me, I'm a Doctor

This stinks of the current political (I was going to say Governmental, but it's all of the buggers,) "I know what's best for you," mindset. No, you don't know what's best for me.

Now if one of my consultants, during a consultation, said "I think your case notes would help research." Then I would agree. BUT, it's the blanket, "I've been told that this sounds like a damn good idea, and it's a money spinner, and I might get a directorship out of it." that really pisses me off.

I can recall no instance of a believable

indication anyone in charge of any of these central national projects regards data as anyone elses if they want it. And they do, they want it all, they want it now, and they want to share it wherever their administrative or political boss wants to share it.

And it can't be anonymised.

Quid pro quo?

So if some pharmaceutical company uses my medical data as part of its research into a new drug, what benefit do I get? A share of the profits? Free access to the drug? Or do I get told that the NHS can't afford to treat me with a drug that I helped develop, while my inbox is swamped with pharma-spam because the "anonymised" data got leaked.

Sharing medical data for medical research should be compulsory but the data should never be sold to anyone else.

Automatic RED flag

care.data, is administered by the HSCIC using software and services provided by a private sector company (ATOS).

ATOS who's other Government contract have gone so well. (fit to work to name but one)

Opting out just for this ONE reason. well opting out for lots of reasons as the whole charade has more holes than Swiss cheese. but this on its own is enough.

The data has the potential to produce wonderful returns for the big companies by ostracising those who are likely to become ill

And Timothy Kelsey

has just fled to Australia while promising that "I'll be back".

Answer: Don't use the NHS ever again, or at least until Timothy Kelsey is in one of the hostels provided by Her Majesty to accommodate those who break the law.