Toadfish in the UK/Europe

[beagle]

Interesting. I see published medical extracts as part of work, and all the data is always suitably anonymised by that point. Within a given study however, survivability is one of the things, if not the key thing, being measured which means keeping track of patients from diagnosis through to (hopefully decades later from another cause) bucket-kicking (as it's known in medical circles).

[Griffin NoName]

Yes, they instantly fronted a  doctor saying exactly that - the survival stuff. It just incensed me even more as he explained our NHS number wouldn't do to link records as not everyone has one bla bla typing errors bla bla. It's rubbish. I wasn't born yesterday. Nor were numbering systems.

And in any case, WE actual cancer patients know exactly what information they have because we know what they have asked us about. AND that's rubbish too. The questions that don't get asked and ought to be would fill the rest of this forum.

And worst of ALL they ought to be asking us to sign an opt IN for our info to be passed anywhere AND they DONT.

Sorry. I am just plain disgusted.



EDIT

Oh great, now there's this.

Mind you, in the early 70's when I worked for the heallth service as a statistician, one of my duties was crossing out names on abortion forms with a black indelible marker pen. Somehow a whoile batch got strewn across Norfolk on their way to me from a Norfolk hospital........  did someone say something about learning the lessons of the past?

The only answer would seem to be to refuse to give one's name and address etc to the NHS ever but insist on being treated as Jane Doe, NFA.    (no f'ing address).

[beagle]

Yep, there all sorts of interesting ethical issues in this area. If, for example, you only study those who opt-in, you may be limiting your study to  well-nourished, bright ABC social group people who look after themselves, and not including those who mix the drugs with drink/narcotics or forget to take it or take erratic doses etc. The ABCs may be the people you want for blood donations for example, but ignoring the rest for new drug trials is also a tad suspect ethically.

My advice is to die of something boring that researchers aren't interested in.  A falling tree is probably good, though can be a bit messy.

[Griffin NoName]

Demographics of falling trees may show surprising results.

Ok, so opting in is compulsory, but they have to make you actively do it - like some kind of opt in ceremony- and get you to repeat back to them "all my very initimate details may be revealed to anyone here or abroad and I may get phoned up by complete strangers asking impertinent questions about me and my bank account may be emptied". "And I wont go to Brussels and bring a human rights case against you because I have been very stupid to get cancer and that means I have no human rights anymore".

I dont care how much They believe its their inalienable right to use my health to do research. It isn't. It's my body, my life, and if They want to work out anything at all, they can PAY me for it if I agree at all.

You might as well say all one legged people have special rules.

[beagle]

I'm not necessarily agreeing with "them". I'm just pointing out that basing medical decisions  on incomplete data has ethical consequences too.

Wonder if the NHS get told when you hand in your dinner pail?  Or whether they just think NHS number 2374563773 is being less troublesome than usual. My guess is they claim to have cured whatever you last complained about, rather than assigning you to that great surgery in the sky and telling the researchers drug 27b needs more work.

[Griffin NoName]

I'm just pointing out that basing medical decisions  on incomplete data has ethical consequences too.

But they don't need my name or phone number.

They may need GPS to check the sort of radio-active rubbish my home was built on and how many years I lived there and how close it was to Sellafield. But even that needn't be attached to the other data in a way that means Joe Bloggs can come and stalk me. I'm talking identity and privacy, not witholding relevant factors.

Or are we genuinely interested in how many of the descendents of the original Smith get ingrowing toenails?

And in any case they don't base medical decisions on complete data because there's no such thing. It's always incomplete. They might decide to do major heart surgery while I am in the last stages of incubating the winter vomiting bug undetectably. etc.

As to ethical decisions, I was told they were throwing extra chemo at me because I was young and it was worth it. If I'd been just a few - very few- years older they said they wouldn't have.... not on medical grounds of it being risky, but because I would be considered older than was worth it. They were totally up front about it.

I suppose you could say it would be unethical to decide I was too old without asking my age.

But that's all   It was research not medical decisions at issue.

Given all the don't eat dairy frightners and other food scares pushed at breast cancer patients why do they never ask about what we eat? for example. one of many never asked. and since they do ask a short list of pretty irrelevant questions that they say are for demographics. the only sensible and relevant question they ask is whether it's in the family. and that's more treatment- tests -  orientated than research.

There are huge problems getting relevant information for masses of research. The number of times I am asked about illnesses in the family and can't answer must be pretty general. My parents never reveal such stuff so what I do know about has been culled from private detection.

Asking someone what they did last night often produces a blank. What chance do researchers have? Knowing my name is not going to help them.




Actually I don't think drug 27B would ever get more work done on it. It's makes more money to invent drug 745N which aims to improve the survival rate of sufferers of diggerydoo disease by an extra 3 days provided they have the genetic trait of liking cherry brandy liquers chocolates but only ...........   (fill in exclusion of choice).


EDIT

There is an ethical dilemma in doctors being able to cure patients easily and with drug companies providing drugs that cure easily without causing more damage than was there already...... they'd all be out of jobs.   

[beagle]

You're assuming it's in the cynical financial interests of drugs companies to ship dodgy drugs. It isn't. By the time a drug gets to market tens of millions have been spent on it.  If it then turns out that out of a million patients six are killed by it, and it has to be withdrawn, then it's an absolute disaster in financial as well as human terms.

We all like to like to hate drugs companies, like we do oil companies, but if the former were a one-way bet to make money I'd have moved all my pension fund into drugs shares long ago.

Or are we genuinely interested in how many of the descendents of the original Smith get ingrowing toenails?

Yes. As medicine moves on from crude chemical attack to genetic manipulation this will become ever more important, if we are to avoid a "genetic thalidomide".

[Griffin NoName]

You're assuming it's in the cynical financial interests of drugs companies to ship dodgy drugs.

No I'm not assuming that at all.

I just think we haven't got it right. I've always liked the idea of paying doctors when they keep us well instead of when they treat us for illness. I'd also prefer to pay for drugs on the basis of more for the ones that cause me the least additional problems.

Or are we genuinely interested in how many of the descendents of the original Smith get ingrowing toenails?

Yes. As medicine moves on from crude chemical attack to genetic manipulation this will become ever more important, if we are to avoid a "genetic thalidomide".

So you think the original Smith can be identified? 

Are you really suggesting They would/could organise genetics by name?  I suppose it might be a way of reducing identity theft lbut I'd have thought DNA would be more useful.

[Griffin NoName]

Time to vote on will Hain survive? But I'm too bored. Certainly his smile has slipped which can only be a good thing.

[beagle]

He's gone up a bit in my estimation after it turns out he was behind the government bail-out of those private pensioners ruined by Browns pension policies.  But after the great Euro-referendum lie it will be a long time before he, or any other Labourite (except maybe Kate Hooey)  reaches positive territory.

Besides, if he gets sacked, he'll just do a token 3 month stint on the back benches before popping up somewhere else on a higher salary.  It's very hard to get rid of bad politicians these days. Even if you send them offf to Brussels like Mandelson they think they can tell you what to do. Hope Rentokil is working on a humane trap type solution. Or maybe Spandau/Hess could serve as a model. A maximum security twilight home for dodgy politicians where they can hector each other without scaring the horses.

[Swatopluk]

What is the current status of St.Helena?
For the nastier cases one of the islands round Antarctica should be cinsidered.

[Griffin NoName]

Trying to work out this Northern Rock stuff. So now it's "nationalised" so it belongs to us. And apparently we have each lent it £2000 to keep it afloat. So, I have £2000 in Northern Rock, right?

So, I could go and take it out. Get me £2000 back. Right?

But, I was thinking, like, if everyone did that, well, wouldn't it go bust?

[Sibling Zono (anon1mat0)]

Actually that is a wonderful idea! If the state bails out a bank (and it bloody happens everywhere!  ) then it should divvy the company in equal shares per citizen. You shouldn't be able to sell immediately but at -say- 6 months to 2 years and pay taxes on the transaction, that way the average citizen would feel that he is getting something out of a classical corporate welfare operation.

[Griffin NoName]

Not quite Politics, but hey, you want to be PM, here's how:

The Secret of Life

and Feeling Good: The New Mood Therapy will tell you how - apparently it is outselling Harry Potter so clearly his methods are now old hat.

[beagle]

Hmmm.   According to this you need to be depressed to make money.

I'll bet the CDO brokers at UBS and Citi were optimists.