Also, this is Ben Goldacre's second big data project in the NHS (that I know of): the first was OpenPrescribing (https://openprescribing.net/), which gave an overview down to GP level of what was being prescribed where.
James, spare a thought for poor Samuel Pepys who, without anaesthesia, had a bladder stone the “size of a tennis ball” removed using a scoop inserted into a cut in his perineum (which was never stitched up). The only good news about this tale is that tennis balls were a bit smaller back then.
If the data this service is pulling from is anything like what i use at work (in a hospital) it would be a very incomplete dataset.
Much of the useful information is buried in free text entries or worse in images or scans of old paper documents. There is no way of searching for patients with asthma as a significant proportion won’t be coded as such or any data about their treatment does not show up in a database. It js about as useful as having paper records as you manually need to read each set of notes if you want to do an audit or research as I have found to my frustration - despite the software costing millions of pounds.
I share (in the proper sense, not the social media usage of the word) Eliot Barrass' view that if data about me has value, that should be mine to realise. I have copyright in it. It should not become free of charge an instrument for pharmaceutical companies (especially not those in the USA) to develop new potions and sell them back to the NHS at monopoly prices.
In all seriousness there is a constant missed opportunity in the space of 'if you do X and inconvenience yourself for the common good, you personally will get Y'.
People may not want to sell ther data to big pharma, but what if they were would receive a new maternity wing of the local hospital if 50000 people in the town signed up?
This principle works on all kinds of things. What about planning? You might not want a power plant within 5 miles of your house, but what if you got free electricity for life etc?
In fact - and hive mind might be needed here - wasn't this tried with nuclear waste a few years ago? I think Ed Davey was the Minister bribing an LA in the North West to take waste.
IIRC some places in America paid people to take COVID vaccines. For all their professed determination to stay out of Bill Gates's evil plans, a lot of them were bought off remarkably cheaply.
Great! Then buy people off for public policy ends (Brazil does/did something similar for ensuring babies get vaccines, I think).
The answer for the data point might be the same:
1) Create a new body called 'NHS data' (remember the NHS 'brand' is very strong);
2) this body is tasked with a) improving the quality of data the NHS gathers and b) working with private partners to monetise this data and drive health improvements
3) the money gained from this is ploughed back into the NHS and
4) this is the important bit that is missed out - the money ploughed back in is seen to be ploughed back in; MRI machines with 'paid for by NHS Data. To support our work then...' etc
I think, James, you have glossed over the 'unease' element of this. I don't think people are wary of sharing data on privacy grounds alone, I think there's also a moral/fairness wariness as well - "it's my data, and not anyone else's; why should you use it get rich"?
I suspect Ben G is one of the good guys, but I wouldn't extrapolate to assume people are 'pro' data sharing in general.
Think I'm more on Alex's side on this though you make an interesting point. I guess I don't really conceptualise it in that way. Like, the NHS is providing a service (healthcare), and use of "my data" is part of the bargain of participating in the system - like how Google can use my search terms to figure out what to advertise to me, thus making them money.
Except (and this is a point I have developed elsewhere) in other situations I can either a) not share my data by not using Google or b) I can get something tangible ('Nectar points') in return for my data.
The gap between 'sharing my data' and 'stuff I get in return' is too weak in the NHS.
If people don't want revolutionary new cures and treatments for diseases to be invented because someone might make money in the process... I'm sorry, I just don't even know where to begin with that.
I'm not saying it's right but they're loads of cases where people don't want to give up 'their' data for the common good, even if the opportunity cost of so doing is really high (see Internet safety and privacy for e.g.).
Thinking aloud - I wonder if the problem is more acute in Britain where the health service is nominally 'socialist? In profit driven systems is it more understood that your data is the hospitals to use?
Of course the same people who are paranoid about Internet privacy also complain about every GDPR window that pops up and hurriedly give their consent because it's not worth it to them to spend the extra ten seconds unticking all the separate cookies use cases. The gap between stated and revealed preferences is enormous.
As for the NHS being "socialist" being a factor here: since when was it socialist to jealously guard your own assets rather than willingly handing them over to the state?
I don't consider myself a "tin foil hat wearer", but something about the Palantir business leaves me feeling uneasy still.
I've always felt that having all of my medical records in one place, shared between GPs and hospitals is a good thing. I still feel that way, but I'm only really comfortable with it if I don't think about "how the sausage is made" so to speak.
Also, this is Ben Goldacre's second big data project in the NHS (that I know of): the first was OpenPrescribing (https://openprescribing.net/), which gave an overview down to GP level of what was being prescribed where.
James, spare a thought for poor Samuel Pepys who, without anaesthesia, had a bladder stone the “size of a tennis ball” removed using a scoop inserted into a cut in his perineum (which was never stitched up). The only good news about this tale is that tennis balls were a bit smaller back then.
This is a brilliant/fascinating historical fact but I’m reticent to hit ‘like’ for obvious reasons! 🤢
I can’t deny that the withholding of the like has giving me dopamine withdrawal 😭
If the data this service is pulling from is anything like what i use at work (in a hospital) it would be a very incomplete dataset.
Much of the useful information is buried in free text entries or worse in images or scans of old paper documents. There is no way of searching for patients with asthma as a significant proportion won’t be coded as such or any data about their treatment does not show up in a database. It js about as useful as having paper records as you manually need to read each set of notes if you want to do an audit or research as I have found to my frustration - despite the software costing millions of pounds.
I share (in the proper sense, not the social media usage of the word) Eliot Barrass' view that if data about me has value, that should be mine to realise. I have copyright in it. It should not become free of charge an instrument for pharmaceutical companies (especially not those in the USA) to develop new potions and sell them back to the NHS at monopoly prices.
How much would you be prepared to sell your data for? Every man has his price...
In all seriousness there is a constant missed opportunity in the space of 'if you do X and inconvenience yourself for the common good, you personally will get Y'.
People may not want to sell ther data to big pharma, but what if they were would receive a new maternity wing of the local hospital if 50000 people in the town signed up?
This principle works on all kinds of things. What about planning? You might not want a power plant within 5 miles of your house, but what if you got free electricity for life etc?
In fact - and hive mind might be needed here - wasn't this tried with nuclear waste a few years ago? I think Ed Davey was the Minister bribing an LA in the North West to take waste.
IIRC some places in America paid people to take COVID vaccines. For all their professed determination to stay out of Bill Gates's evil plans, a lot of them were bought off remarkably cheaply.
Great! Then buy people off for public policy ends (Brazil does/did something similar for ensuring babies get vaccines, I think).
The answer for the data point might be the same:
1) Create a new body called 'NHS data' (remember the NHS 'brand' is very strong);
2) this body is tasked with a) improving the quality of data the NHS gathers and b) working with private partners to monetise this data and drive health improvements
3) the money gained from this is ploughed back into the NHS and
4) this is the important bit that is missed out - the money ploughed back in is seen to be ploughed back in; MRI machines with 'paid for by NHS Data. To support our work then...' etc
I think, James, you have glossed over the 'unease' element of this. I don't think people are wary of sharing data on privacy grounds alone, I think there's also a moral/fairness wariness as well - "it's my data, and not anyone else's; why should you use it get rich"?
I suspect Ben G is one of the good guys, but I wouldn't extrapolate to assume people are 'pro' data sharing in general.
Think I'm more on Alex's side on this though you make an interesting point. I guess I don't really conceptualise it in that way. Like, the NHS is providing a service (healthcare), and use of "my data" is part of the bargain of participating in the system - like how Google can use my search terms to figure out what to advertise to me, thus making them money.
Except (and this is a point I have developed elsewhere) in other situations I can either a) not share my data by not using Google or b) I can get something tangible ('Nectar points') in return for my data.
The gap between 'sharing my data' and 'stuff I get in return' is too weak in the NHS.
If people don't want revolutionary new cures and treatments for diseases to be invented because someone might make money in the process... I'm sorry, I just don't even know where to begin with that.
I'm not saying it's right but they're loads of cases where people don't want to give up 'their' data for the common good, even if the opportunity cost of so doing is really high (see Internet safety and privacy for e.g.).
Thinking aloud - I wonder if the problem is more acute in Britain where the health service is nominally 'socialist? In profit driven systems is it more understood that your data is the hospitals to use?
Okay, this is fair.
Of course the same people who are paranoid about Internet privacy also complain about every GDPR window that pops up and hurriedly give their consent because it's not worth it to them to spend the extra ten seconds unticking all the separate cookies use cases. The gap between stated and revealed preferences is enormous.
As for the NHS being "socialist" being a factor here: since when was it socialist to jealously guard your own assets rather than willingly handing them over to the state?
You'd have to ask a socialist, I'm afraid!
I don't consider myself a "tin foil hat wearer", but something about the Palantir business leaves me feeling uneasy still.
I've always felt that having all of my medical records in one place, shared between GPs and hospitals is a good thing. I still feel that way, but I'm only really comfortable with it if I don't think about "how the sausage is made" so to speak.