bungeejumper wrote:So now ask me how I feel about the NHS flogging off my details to the US private sector, at the exact moment when it's gunning hard to be allowed into the NHS policy sector? Be careful what you wish for.
The US private sector ploughs a heck of a lot of money into research and development for drugs and treatments. I know this because my employment now, and for the past couple of decades, has largely been thanks to US (and UK/European(*)) big pharma's huge investments in their research and development facilities and pipelines.
[(*) in practice, most of the big pharma have R&D and other operations spread all around the world, so it doesn't really make sense to distinguish US from non-US big pharma; it's really global 'big pharma']The size and scale of big pharma's operations is enormous. There are a lot of very clever people doing a lot of exceptionally good work in those private companies on a seriously industrial scale.
Far more, and far more focused and determined than I ever believe that keeping it 'public' (or whatever the correct term is) could ever result in. I simply do not believe there would be anything like the same amazing rate of progress in medical research without these big pharma companies and their willingness to take investment risks.
The kind of money these big pharma companies invest on a speculative basis would be prohibitive for (e.g.) the UK government to ever justify. I mean, just look at that recent announcement for a UK agency (I forget what they plan to call it) to do speculative development that they announced a few months ago - I couldn't help laugh at the pathetically small sums of money they were making available. Those kind of sums aren't even a rounding error compared to what big pharma invest in their R&D.
For my employer, the vast majority of orders in $$$ terms come from big pharma. It's true that a small proportion do come from publicly funded bodies. But the vast majority is private, big pharma. The largest orders, the largest investments, the largest facilities are all for big pharma.
Just look at for coronavirus, how the most successful efforts needed to call upon big pharma. Even if those big pharma didn't do the original R&D in this case, it is their size and money and huge investment in facilities, etc, that enabled rapid scale up of vaccine trials and the manufacture of the vaccines, etc.
Just think - if you provide your data, and your late father's data, to these companies, wouldn't you be happy if they could learn something from it, develop new treatments, and improve your chances if your cancer were to come back?
Wouldn't you want to help prevent others going through what you and your family have gone through?
I just really don't understand where you're coming from what you say "Be careful what you wish for".
Personally, I wish for as much money as possible to be ploughed into medical and scientific understanding. I wish for scientists, doctors and researchers to be given as much access, to as much data, as at all possible to help them do their research.
I just do not understand, in practice, in the real world, any argument that could justify keeping potentially life saving data under lock and key, blocking the best scientists and the best equipped facilities in the world from accessing that data to mine it for scientific 'gold' that could benefit us all.
For example, I don't buy into the concerns that some others have raised about e.g. insurance companies nefariously getting hold of this data and penalizing individuals on that basis. Insurance companies don't run on the basis of one or two individual people analysing the data of one or two people and deciding their premiums where they could incorporate such information into their policy decisions without it becoming known. These companies deal with huge quantities of data about a lot of people. It wouldn't be possible to incorporate illegal use of data into their premium calculations and not (at least eventually) be found out. So much so, that the vast majority of companies will - out of practical necessity - play by the book. Even if someone offered them hacked data on the dark web, they simply would not accept it. The risk to their business - when, not if - they are caught out, would not be worth it.
It saddens me that as a nation, we seem to have twisted ourselves so far in knots, from tabloids portraying big pharma as evil, the media creating scare stories about hacking, labour creating scare stories about the NHS god forbid being 'sold off' (whatever that actually means), and such like... that we would actually seem to prefer to keep our data under lock and key, than give some of the worlds best scientists, in the best equipped labs in the world, access to data which they might be able to use to help drive research and develop new scientific understanding and treatments that could be a force for global good.