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(from 'Pulse Today' online for medical professionals).
NHS Constitution to be modified to allow drug companies patient records accessPrime Minister David Cameron has announced the NHS Constitution is set to be changed to allow pharmaceutical companies access to anonymised GP records 'on a scale never seen before'.
The constitution currently guarantees patients the right to confidentiality and ‘to expect the NHS to keep your confidential information safe and secure'.
But a consultation on the constitution due to start in October is set to overturn this right to allow patients' data to be automatically used for research unless the patient specifically chooses to opt out, the Mr Cameron revealed.
Pulse revealed in May that patients would be given the right to withhold identifiable data from being extracted from GP records, under proposed changes to a Government scheme to create a central NHS patient data service.
In a speech to the Global Health Policy Summit in London last week, Mr Cameron said the Government would also be consulting on the changes to the NHS Constitution later in the year.
He told the summit the data would be anonymised, but the open access would ‘help make the UK the best place in the world to carry out cutting-edge research'.
Mr Cameron said: ‘Drug development relies more and more on real-time data. The UK is going to be the world leader when it comes to making this kind of data available, and we're going to do this by harnessing the incredible data collected by our NHS.
‘We are about to consult on changing the NHS Constitution so that the default setting is for patients' data to be used for research unless the patient opts out. This will make anonymised data available to scientists and researchers on a scale never seen before.'
He said the data would be used for research into ‘long-neglected areas' of care like dementia.
The consultation is due to start in October, according to the Department of Health.
sounds like a good idea, access to lots of data for responsible scientists and researchers........
cant imagine many people will agree with me....
Article clearly states the records will be anonymous....dont see the problem in that case, surely information to help pharmaceutical develop better drugs is good news?
(awaits the backlash about evil pharmaceutical companies)
Why would anyone not want anonymised data to be used for research?
As a news item it sounds pretty muddled to me. If data is anonymous then it's still being kept confidential I would have thought?
sounds like a good idea, access to lots of data for responsible scientists and researchers........cant imagine many people will agree with me....
+1
So is it anonymised by default or do you have to ask for your identity to be witheld? I'm all for the researchers having access to some info that said "I allong with 200 other people had disease X, was given drug Y and 20 years later sufferd from Z" and them using that to figure out a long term trend, less keen on them knowing what is personaly wrong with me on an individual level.
Pulse revealed in May that patients would be given the right to withhold identifiable data from being extracted from GP records, under proposed changes to a Government scheme to create a central NHS patient data service.
He told the summit the data would be anonymised, but the open access would ‘help make the UK the best place in the world to carry out cutting-edge research'.
Stinks of more profit for Big Pharma and their shareholders naturally!
More money to be spent on asking patients whether they wish to opt in or not, despite a Questionnaire sent out not that long ago concerning the sharing of medical records amongst the NHS.
Hopefully they'll be giving the data to the big UK companies [AZ and GSK are all I can think of] and getting some return on reduced drug costs to the NHS
Or are they just going to let the Americans and Swiss take it too - and the profits from it?
Article clearly states the records will be anonymous
sadly government agencies are not that hot on being careful with their "confidential" data. in this case though, the drug companies are unlikely to be interested in individuals but in the epidemiological data - seriously, 1 person having a reaction to a drug isn't a big deal, 20% is.
Stinks of more profit for Big Pharma and their shareholders naturally!
Drug companies make money by selling drugs, the better the drugs, the more money they make. So by accessing what amounts to years of live data on the effects of their drugs and how drug a interacts with drug b, they can both refine their own drugs and advise against drug a being prescribed whilst drug b is in use. For example, aspirin thins the blood and can reduce the risk of strokes, but ibuprofen cancels this - found by epidemiological research using returned prescriptions.
So better drugs make more money for the evil capitalists - who benefits? the biggest players in the stock markets are the pension funds. So better drugs can mean better healthcare with fewer adverse drug reactions and bigger pension pots for us.
that's just awful, isn't it?
the tragedy here is that government doesnt fund its own research and that we are reliant on the private sector who to put up the cash and ultimately charge the NHS insane prices for drugs,
ultimately it costs the taxpayer more
other than that my only concern is that its one step away from letting insurance companies have access and as we approach a privatised healthcare system i think this is a real issue
the tragedy here is that government doesnt fund its own research
Completely untrue. The government directly funds lots of research.
the tragedy here is that government doesnt fund its own research
Really, I guess the meeting I was in this am was all lies then?
Seems Ok to me if it's anonymous, I also suspect they'll have to pay for it so if that creates money for a trust/foundation then great.
the tragedy here is that government doesnt fund its own research and that we are reliant on the private sector who to put up the cash and ultimately charge the NHS insane prices for drugs,
ultimately it costs the taxpayer more
Untrue, the government puts a lot of money into research, especialy diseases that aren't as comercialy viable (Malaria, AIDS for 2 examples, there's little or no money to be made from cureing them).
The NHS is actualy the main factor in keeping drug prices down, if it wasn't for NHS and NICE we'd be paying American prices, and those really are scary.
And if the UK government did directly fund (and therefore own) pharma research, what happens to those drugs, do they give them for free to the NHS? What about the rest of the world? Either PG and GSK get to develop drugs for the whole world and therefore make their money selling several million doses. Or the government does it on a national scale and has to fund that research through the tens or hundreds of doses it might sell in the UK. Bear in mind we've done most of the big/easy targets and what's left is the fildy little diseases where the research takes longer and the number of ill people to pay for it is small. E.g. smallpox, millions of potential 'customers', a simple vaccine = cheep vaccines and lots of profit. A cure for a disease that only 20 people have takes a lot longer to develop and at the end of it you have to charge them each hundreds of thousands of pounds to pay for that research.
Stinks of more profit for Big Pharma and their shareholders naturally!
Pharma ROI is pretty shitty. Start with
£100million.
Invest in £100,000 in each of one hundred projects and that's £10million gone.
Of those hundred, ten might develop into something worth following up. Invest £9million more in each of those.
Of those ten, five probably lead to nothing, four lead to a treatment for a disease but will struggle to make the money back and generate column inches of bad headlines with "My mum's being refused treatment because the pharma company wants £20,000 per cycle of tratment", one will be Viagra and make them the next £100million to start the process again.
The above is a simplification. Off the top of my head from my medicinal chemistry lectures the first round is more like 14million different compounds being tested against a single disease of which a tiny fraction then become projects. So you'll actualy end up with tens or hundreds of projects running with the same aim of which only 1 will ever make you the money back.
yeah fair point, i work in public sector research and have collaborated several times with big pharma, AZ, novartis etc, ive presented data to a drug company telling them that their multi million pound drug didnt work in vivo- that really is mood dampener
but the large scale drug/chemical synthesis/development programmes in industry cant be matched in the public sector
theres also a big push by pharma to force new drugs onto the market once the patents have run out on their old drugs. regardless of how effective they are
A close friend works as a rep for one of the bigger/biggest pharma companies. He was at a national conference a couple of years ago where the keynote speaker put a photo of Lansley up in the screen and said, (quite literally, and to great applause from most of those present) "This man is going to make us all very rich."
I'm afraid I find myself sceptical about any arrangment this man sets up with the pharmaceutical industry. 🙁 It does sound promising, but I really hope that the taxpayer and the patient do as well out of this as the paharmaceutical industry.
Please spare us the poor pharmaceutical company routine.
One word for you to ponder: Xygris.
Just another wee chip off the Nhs headstone I think..
Nothing against companies doing research but is there not some form of access already? Poss for those inside the Nhs already..?
Hmm, really don't trust anything the Tories do, and labour come to think of it.
Sort happens already we'ren running 3 researches at the minute but it's limited infomation they recieve.
So C-G, what [u]exactly[/u] is the problem?
are pharma companies going to release all their drug trail data in return?
I would prefer that the people making the drugs had no idea what was going on in the NHS at all.
Good luck to them sorting through boxes and boxes of badly written mould pieces of paper.
A by product of this might just be a proper system where records can be accessed anywhere 🙂
Go for it Green lights a go go!
Really, I guess the meeting I was in this am was all lies then?
What? NHS wastes time and money on made up meetings? Where's the tax payers alliance I want my money back!
On the original story, I'm fine with it in principle but would be concerned it would allow development to be further skewed towards things they can sell us, over things we need... (more antidepressants and erection pills etc).
are pharma companies going to release all their drug trail data in return?
*falls about laughing*
So C-G, what exactly is the problem?
It's the Olympics.
😛
"Big pharma" is just one of those "A-Level Activism" targets.
If ya really don't like big pharma, don't use their products; if enough people feel the same they'll go out of business, and then we'll see what the world's like without it.
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It was genuine question. There seems to be a general negative point about (1) large pharma cos, (2) profits, and (3) the providers of equity capital. It would be interesting to see these developed and related to the issue at hand.
teamhurtmore - MemberSo C-G, what [u]exactly[/u] is the problem?
Judging by her last post and using my deductive powers I would hypothesis that C-G doesn't trust pharmaceutical companies.
Are you coming up with any other possible conclusions teamhurtmore ?
Seems like a perfectly good idea to me.
C-G whats the problem with this?
I dont want to assume or pre-judge anything. I am genuinely interested. The tone of the OP (and subsequent post) is negative but the reasons still unclear.
but the reasons still unclear.
I got the impression from her link that her lack of trust in pharmaceutical companies might have something to do with this :
[i]"GlaxoSmithKline Plc agreed to plead guilty to misdemeanour criminal charges and pay $3 billion to settle what government officials on Monday described as the largest case of healthcare fraud in U.S. history."[/i]
....and the link is.....?
The one she posted
Moderately amusing but hardly helpful Ernie.
This might be a general diatribe against large companies, pharma companies, making profits, providers of equity capital any kind of general change to the provision of health care etc in which it can be given the appropriate degree of attention. Or, I hope, there are specific points relating to the subject that genuinely challenge the proposal. Hence the question.
Why would anyone not want anonymised data to be used for research?
I would guess at lack of trust in either the govt to securely delete the personal data or a philosophical/moral objection to helping pharma companies make shed loads of money by "helping" people and yet denying them access to drugs if they cannot afford them.
Some people just have different morals from you.
Not that I actually think you dont know the answer here, nor do I expect you to agree but i suspect the objections are [ and I am not saying they are all mine(1) large pharma cos, (2) profits, and (3) the providers of equity capital. It would be interesting to see these developed and related to the issue at hand.
1- They exist to make profit and therefore they deny people access to medication that will save/improve their lifes because they cannot pay. Some poeple are uncomfortbale with letting poor people die some are not and think capitalism is ace and always best. Some would porefer to no thelp them make lots of money. As DD notes it not like they are going tpo share their data with us or stop telling fibs about thier own meds now is it.
2. Profits - well it depends what it is but basically it means charging people more for your service or things than they cost you...if someone does this on the fourm with bought parts it is often seen as ripping people off. No one needs to make profit to survive - they only need to cover costs[ including wages whihc are often large]. Still they value profits above saving lifes. Some are morally uncomfortable with this...are you going to ask why now?
3. You seem like a clever fella so I will see if you can think of any reason beyond a chip on their shoulder, envy and/or a failure to understand economics.
Moderately amusing but hardly helpful Ernie.
That's his [i]raison d'etre[/i].
There is already a source of this information, called the GPRD (general practice research database) in the UK and (retrospective) studies are already being published with data from it.
You can probably guess that I have an interest in this area from the tone of my post.
As far as making lots of money from this venture, I doubt this would happen as the stuff that you need to sell a medication is a good quality (read expensive) prospective study of what happens with the drug vs placebo or other active comparator.
Retrospective studies of populations are interesting, and add from a safty point of view. However they are viewed as being lower down the heirachy of evidence base to prospective studies in terms of quality of evidence for decision making.
There remains a possibility for revenue generation for the government as at the moment I beleive that Pharma companies can have no involvement in any studies which use this type of data in the UK
Well JY let's hope it's not (3) and considerably more well developed than (1) and (2). No one would be silly enough to suggest that they do not need profits to survive, unless they are accountants perhaps and trying to make an important point about cash flow. But I doubt that's the case here.
It will be interesting to learn.
It will be interesting to learn.
Will it be as interesting as you're being patronising?
Read it as you will DD, it's a genuine question. Interesting topic, but objections so far seem very general. It [i]would[/i] be interesting to learn more detailed objections.
Eg, is this more than the CPR Datalink proposal/e-health research project? If so, how and why?
Sounds like C-G has the inside track, so why not ask her?
Some poeple are uncomfortbale with letting poor people die
My last load of NHS provided drugs didn't cost me anything. Mind you, I'm reasonably well off, would I have had to pay if I was poor?
1- They exist to make profit and therefore they deny people access to medication that will save/improve their lifes because they cannot pay. Some poeple are uncomfortbale with letting poor people die some are not and think capitalism is ace and always best. Some would porefer to no thelp them make lots of money. As DD notes it not like they are going tpo share their data with us or stop telling fibs about thier own meds now is it.
2. Profits - well it depends what it is but basically it means charging people more for your service or things than they cost you...if someone does this on the fourm with bought parts it is often seen as ripping people off. No one needs to make profit to survive - they only need to cover costs[ including wages whihc are often large]. Still they value profits above saving lifes. Some are morally uncomfortable with this...are you going to ask why now?
3. You seem like a clever fella so I will see if you can think of any reason beyond a chip on their shoulder, envy and/or a failure to understand economics.
1) The alternative is to let both rich and poor people die? Better to save some people than none. Bessides that's what the NHS is for, it either aporves a drug or it doesn't. If it's affordable and cost effective it saves people, if it's not then it's sold to hypocondriac Americans via a TV advert involving a a girl in her early 20's skipping through a barley field with a labradoor.
2) Pharma wages are actualy pretty rubbish. People in my year at uni who went into Pharma typicaly earnt about two thirds of what people who went into oil and gas or petrochemicals. And if you can't figure out why you need a profit then you really should keep quiet. Shareholders invest in a company, the company then uses that money to do things, those things make a profit and pay the shareholders a dividend, if they dont make a profit there's no dividend and less people want the shares so there's less money invested in the company.
3) see point 2 about failing to grasp economics.
1- They exist to make profit and therefore they deny people access to medication that will save/improve their lifes because they cannot pay.
In the majority of cases, the medication wouldn't exist if there was no profit incentive for the developer. Not defending the position, just the way it is.
In the interests of disclosure I work for 'big pharma' at the moment. There are an awful lot of failures for the profitable products that make the grade, and they all cost more or less the same in terms of R&D. The successful products also need to cover themselves should there be unpleasant unintended consequences further down the line, even when it's not clearly the products fault.
There remains a possibility for revenue generation for the government as at the moment I beleive that Pharma companies can have no involvement in any studies which use this type of data in the UK
I don't know about the access (I'm not a clinician or white coated mad scientists meddling with THINGS THEY DO NOT UNDERSTAND) but I reckon you've hit the nail on the head about it being a revenue stream for the government.
My last load of NHS provided drugs didn't cost me anything. Mind you, I'm reasonably well off, would I have had to pay if I was poor?
You must be brighter than that.....
......but just in case: 'some people are uncomfortable with letting poor people who don't live in the UK to die'.
Except that in areas where you pay for healthcare, such as the US, you pay for ALL healthcare, eg x-rays and consultations, not just drugs. If your society deems that you pay for the healthcare you receive, how is that anything to do with the evil drug companies?
Think he may be looking at people significantly poorer than folk in America, such as Africa where the majority of people have problems buying food let alone drugs.
It is claimed that big pharma companies actively resist sales in such locations as it would drive prices down in more affluent nations; also overzealous protection of patents to the detriment of families existing on the borderline between life and death (specifically I am thinking of AIDS drugs).
I am not looking to argue the rights and wrongs, just clarifying what, I think, JY meant.
Off to work now.
Have a nice day.
No one would be silly enough to suggest that they do not need profits to survive
excellent point can you just explain the myth of charity to me and not for profit organisations? I realise they are extinct but historically what did they do?
1) The alternative is to let both rich and poor people die? Better to save some people than none.
you are right there is no way we could let both life..thanks for clearing it up..its impossible innit
Pharma wages are actualy pretty rubbish
And their profits which is what i was discussing are what?
3) see point 2 about failing to grasp economics.
I can epoxlain the cpaitlaist model if you wish but i am simply pointing out that it is is not the only way and one of the results is that peopel die becaus etheir is no moiney one saving them. I a would prefer a moral system than an economic one tbh
In the majority of cases, the medication wouldn't exist if there was no profit incentive for the developer. Not defending the position, just the way it is.
Kepep buyoing the capitlaist dream/BS...is that actually true? if there was no money people would not try to save people's lifes...are you really sure?
PS from my opening post
Not that I actually think you dont know the answer here, nor do I expect you to agree but [b]i suspect the objections are [ and I am not saying they are all mine
[/b]I was answering a non genuine question only to allow our resident right wing economist to patronise me a little more.
I liked
More is spent on marketing (25 per cent of revenues) than on discovering new molecules (1.3 per cent).
Yes you are all right there really is no alternative to this as capitalism is so efficient and the market just so perfect...bless it and all it does for [s]marketing managers [/s] healthcare
]
Pharma wages are actualy pretty rubbish
The staff need to get themselves unionised. Have they seen what Tube workers earn these days?
Some good points in that article about the lack of innovation in pharma, but also some intentionally misleading pish. The 1.3 per cent figure from Prof Light refers to pre-clinical research - the discovering new molecules bit prior to finding out if they actually do anything in a human. That's the cheap part of pharma research - vast majority of costs and risk come in clinical trials. The totality is still a low number, relatively speaking, but it's nothing like 1.3 per cent.I likedMore is spent on marketing (25 per cent of revenues) than on discovering new molecules (1.3 per cent).
Yes you are all right there really is no alternative to this as capitalism is so efficient and the market just so perfect...bless it and all it does for marketing managers healthcare
]
The part about only testing a new medicine against a placebo is also wrong, obviously.
Kepep buyoing the capitlaist dream/BS...is that actually true? if there was no money people would not try to save people's lifes...are you really sure?
Slightly insulting for no reason there, well done. The argument is whether the development would take place if it weren't done for profit, and I see no proof that it would - other than a few exceptions like the Gates foundation. Wonder where he got his fortune from to be a philanthropist?
I a would prefer a moral system than an economic one tbh
Wouldn't we all? When you find the alternate dimension where all humans are decent people, let me know.
When you find the alternate dimension where all humans are decent people, let me know
Slightly insulting for no reason there, well done.
🙄
The argument is whether the development would take place if it weren't done for profit, and I see no proof that it would
It seems to me to be a huge leap to assume that if we could not make profit we would just let people die and not try and make medicines to cure diseases.
This is what you are saying ..if it was not for money no one would develop drugs. I think they would but it would be state funded and we would save at least 25% on marketing costs.
Capitalists often just tell us this is the only way - read the link for why it is not a good thing - It is not the only way it is just the way we currently do it and this is not the same thing.
Well JY, it will be interesting to see alternative models. A cross check between the financial statements of Astra Zeneca and Glaxo will immediately raise question marks over the marketing expense statement. While marketing is high, that is a deliberate distortion.....just look at any annual report. But, ask yourself why marketing is high? The major drugs companies have very high revenue concentration by drug. In Astras case, two drugs make up almost 40% of total sales. Glaxo is better with top two just over 20%. But whatever the precise margins, these companies have to maximise returns here in the face of heavy R&D risk and investment requirements. Then the dreaded capitalist model has produced the whole industry of generic drugs which has had a massive impact on margins (+ve for consumers) and choice and accessibility (ditto).
An important consequence of competition has been the fact that drug companies have been forced to stop relying on big drug blockbuster and have replaced them with sales to emerging markets, vaccines, consumer healthcare, generics and diagnostics (ditto).
So while I accept that there are some dubious practices within the industry this simplistic jump to conclusions that it is completely immoral, that profits and marketing are not required and that a global pharma industry could be sustained on a not-for-profits basis seem a little wide of the mark. Just my opinion of course.
But back to the OP, I would be interested to know whether there have been a positive outcomes from UK Biobank from the industry insiders. That might be an interesting point to start understanding whether the current proposals make sense or not.
Edit for x-post. So the state funds would come from.........?
The link talks a lot of c*ck, doesn't include clinical trials costs for one. I think I have a little more experience in seeing the lifecycle of a drug than that one article gives, and I'm prepared to stick with that.
This is what you are saying ..if it was not for money no one would develop drugs. I think they would but it would be state funded and we would save at least 25% on marketing costs.
Not what I'm saying at all. Again, you think you know what & how I think. Very presumptuous of you. 🙄
My quote:
In the majority of cases, the medication wouldn't exist if there was no profit incentive for the developer. Not defending the position, just the way it is.
The majority of medication on offer in your average UK pharmacy was developed by a profit oriented entity of some description. If we lived in a Utopian society, where enough income was collected by countries to fund such research then indeed it might be possible to develop drugs at overall cheaper costs and even open source them so the world can benefit, but the fact remains this is not how the world works today, and I have insufficient faith in humanity to see it ever changing.
But as you appear to be determined to argue with me even when I agree with you on many of your points I'll leave it at that.
You are pining for TJ arent you 😳
What do you expect me to? Debate with Mr capitalism alternatives to the market?
@ brassneck
Just replace money with profit in my quote [which I would argue is interchangeable in that sentence anyway ]- i am sure you could argue the case though 😉
you appear to be determined to argue with me even when I agree with you on many of your points I'll leave it at that.
LOL yes it is my fault you are arguing with me when you agree with me
One of the things capitlaism relies on [ like us propping up the banks or having swathes of cuts] is the myth that there is no alternative to it but it is not true. There are if we want them.
JY - yea right!!! Haven't you noticed how pleasant STW has become recently!!!!
There are plenty of alternatives to capitalism include the UK's version of a mixed economy, funnily enough, where health care involves the private and public sector both allocating scarce resources. So the "anti-capitalism" argument, while easy to apply, is hardly convincing!!
And state funding comes from......?
And the development of drugs companies and there distribution globally is funded by......?
And using a vast body of data for the development of future cures is harmful because.......?
